WorldWideScience

Sample records for providing end-of-life care

  1. End of Life Care

    Science.gov (United States)

    ... Related Topics Choosing Wisely Join our e-newsletter! Aging & Health A to Z End of Life Care ... be used. Ice chips, popsicles, moist swabs, or artificial saliva can help prevent the mouth from becoming ...

  2. The trajectory of experience of critical care nurses in providing end-of-life care: A qualitative descriptive study.

    Science.gov (United States)

    Ong, Keh Kiong; Ting, Kit Cheng; Chow, Yeow Leng

    2018-01-01

    To understand the perceptions of critical care nurses towards providing end-of-life care. There has been an increasing interest in end-of-life care in the critical care setting. In Singapore, approximately half of deaths in the hospital occur during critical care. While nurses are well positioned to provide end-of-life care to patients and their family members, they faced barriers to providing end-of-life care. Also, providing end-of-life care has profound positive and negative psychological effects on nurses, with the latter being more prominent. Qualitative descriptive design. Data collection was performed in a medical intensive care unit of a public tertiary hospital in Singapore. Ten registered nurses were purposively sampled and interviewed individually using a semi-structured interview guide. A codebook was developed to guide coding, and data were thematically analysed. Rigour was maintained. Nurses went through a trajectory of experience. They experienced the culture of care and developed dissatisfaction with it. The tension shaped their perception and meaning of life and death, and they developed mechanisms to reach resolution. This study provides insight on nurses' perception as a trajectory of experience and raised several implications on clinical practice, policy and research. There is a need to alleviate the tension nurses face and to facilitate coming to terms with the tension by improving the culture of care and supporting nurses. Nurses could be involved more in decision-making and empowered to start end-of-life care conversations within the team and with family members. Communication with family members and between nurses and doctors could be improved. Support for nurses providing end-of-life care could be enhanced through promoting social networks, education and bereavement support. Further research is needed to explore ways to support and empower nurses to provide end-of-life care in critical care. © 2017 John Wiley & Sons Ltd.

  3. Exploring Health Care Providers' Views About Initiating End-of-Life Care Communication.

    Science.gov (United States)

    Nedjat-Haiem, Frances R; Carrion, Iraida V; Gonzalez, Krystana; Ell, Kathleen; Thompson, Beti; Mishra, Shiraz I

    2017-05-01

    Numerous factors impede effective and timely end-of-life (EOL) care communication. These factors include delays in communication until patients are seriously ill and/or close to death. Gaps in patient-provider communication negatively affect advance care planning and limit referrals to palliative and hospice care. Confusion about the roles of various health care providers also limits communication, especially when providers do not coordinate care with other health care providers in various disciplines. Although providers receive education regarding EOL communication and care coordination, little is known about the roles of all health care providers, including nonphysician support staff working with physicians to discuss the possibility of dying and help patients prepare for death. This study explores the perspectives of physicians, nurses, social workers, and chaplains on engaging seriously ill patients and families in EOL care communication. Qualitative data were from 79 (medical and nonmedical) providers practicing at 2 medical centers in Central Los Angeles. Three themes that describe providers' perceptions of their roles and responsibility in talking with seriously ill patients emerged: (1) providers' roles for engaging in EOL discussions, (2) responsibility of physicians for initiating and leading discussions, and (3) need for team co-management patient care. Providers highlighted the importance of beginning discussions early by having physicians lead them, specifically due to their medical training and need to clarify medical information regarding patients' prognosis. Although physicians are a vital part of leading EOL communication, and are at the center of communication of medical information, an interdisciplinary approach that involves nurses, social workers, and chaplains could significantly improve patient care.

  4. The experiences of pediatric social workers providing end-of-life care.

    Science.gov (United States)

    Muskat, Barbara; Brownstone, David; Greenblatt, Andrea

    2017-07-01

    Pediatric social workers working in acute care hospital settings may care for children and their families in end-of-life circumstances. This qualitative study is part of a larger study focusing on the experiences of health care providers working with dying children. This study consisted of 9 semi-structured interviews of acute care pediatric social workers who work with dying children and their families. Themes included the role of social work with dying children, the impact of their work and coping strategies. Authors suggest a hospital-worker partnership in supporting staff and promotion of supportive resources.

  5. Training Providers and Patients to Talk about End-of-Life Care

    Science.gov (United States)

    Failing to discuss the transition from active cancer treatment to end-of-life care can leave doctors unsure of what a patient truly wants. Failing to receive end-of-life care in line with their values and wishes can cause patients and their families great distress. Researchers have developed innovative, evidence-based programs to help doctors and patients improve their communication skills and grow comfortable with these discussions.

  6. Factors associated with end-of-life by home-visit nursing-care providers in Japan.

    Science.gov (United States)

    Nakanishi, Miharu; Niimura, Junko; Nishida, Atsushi

    2017-06-01

    Home-visit nursing-care services in Japan are expected to provide home hospice services for older patients with non-cancer diseases. The aim of the present study was to examine factors that contribute to the provision of end-of-life care by home-visit nursing-care providers in Japan. The present retrospective study was carried out using nationally representative cross-sectional data from the 2007, 2010, and 2013 Survey of Institutions and Establishments for Long-Term Care. A total of 138 008 randomly sampled home-visit nursing-care service users were included in this analysis. End-of-life care (study outcome) was defined as the provision of nursing-care within the last month of life. Of the 138 008 patients at home, 2280 (1.7%) received home-based nursing care within the last month of life, and end-of-life care was offered primarily to cancer patients (n = 1651; 72.4%). After accounting for patient characteristics, patients were more likely to receive end-of-life care when they used home-visit nursing-care providers that had a greater number of nursing staff or were located in a region with fewer hospital beds. Among home-visit nursing-care providers, the nursing staff ratio and the availability of hospital beds were related to the provision of end-of-life care. Home-visit nursing-care providers should establish specialist hospice care teams with enhanced staffing ratios to allow for the adequate provision of home-based end-of-life care. A community-based network between home-visit nursing-care providers and hospitals should also be established to attain an integrated end-of-life care system for elderly populations in regions with more hospital beds. Geriatr Gerontol Int 2017; 17: 991-998. © 2016 Japan Geriatrics Society.

  7. A co-design process developing heuristics for practitioners providing end of life care for people with dementia.

    Science.gov (United States)

    Davies, Nathan; Mathew, Rammya; Wilcock, Jane; Manthorpe, Jill; Sampson, Elizabeth L; Lamahewa, Kethakie; Iliffe, Steve

    2016-08-02

    The end of life for someone with dementia can present many challenges for practitioners; such as, providing care if there are swallowing difficulties. This study aimed to develop a toolkit of heuristics (rules-of-thumb) to aid practitioners making end-of-life care decisions for people with dementia. An iterative co-design approach was adopted using a literature review and qualitative methods, including; 1) qualitative interviews and focus groups with family carers and 2) focus groups with health and care professionals. Family carers were recruited from a national charity, purposively sampling those with experience of end-of-life care for a person with dementia. Health and care professionals were purposively sampled to include a broad range of expertise including; general practitioners, palliative care specialists, and geriatricians. A co-design group was established consisting of health and social care experts and family carers, to synthesise the findings from the qualitative work and produce a toolkit of heuristics to be tested in practice. Four broad areas were identified as requiring complex decisions at the end of life; 1) eating/swallowing difficulties, 2) agitation/restlessness, 3) ending life-sustaining treatment, and 4) providing "routine care" at the end of life. Each topic became a heuristic consisting of rules arranged into flowcharts. Eating/swallowing difficulties have three rules; ensuring eating/swallowing difficulties do not come as a surprise, considering if the situation is an emergency, and considering 'comfort feeding' only versus time-trialled artificial feeding. Agitation/restlessness encourages a holistic approach, considering the environment, physical causes, and the carer's wellbeing. Ending life-sustaining treatment supports practitioners through a process of considering the benefits of treatment versus quality-of-life and comfort. Finally, a heuristic on providing routine care such as bathing, prompts practitioners to consider adapting

  8. End-of-life decisions in perinatal care. A view from health-care providers

    Directory of Open Access Journals (Sweden)

    Patricia Grether

    2015-11-01

    Full Text Available Objective. To examine the opinions of a perinatal health team regarding decisions related to late termination of pregnancy and severely ill newborns. Materials and Methods. An anonymous questionnaire was administered to physicians, social workers, and nurses in perinatal care. Differences were evaluated using the chi square and Student’s t tests. Results. When considering severely ill fetuses and newborns, 82% and 93% of participants, respectively, opted for providing palliative care, whereas 18% considered feticide as an alter- native. Those who opted for palliative care aimed to diminish suffering and those who opted for intensive care intended to protect life or sanctity of life. There was poor knowledge about the laws that regulate these decisions. Conclusions. Although there is no consensus on what decisions should be taken with severely ill fetuses or neonates, most participants considered palliative care as the first option, but feticide or induced neonatal death was not ruled out.

  9. Self-Perceived End-of-Life Care Competencies of Health-Care Providers at a Large Academic Medical Center.

    Science.gov (United States)

    Montagnini, Marcos; Smith, Heather M; Price, Deborah M; Ghosh, Bidisha; Strodtman, Linda

    2018-01-01

    In the United States, most deaths occur in hospitals, with approximately 25% of hospitalized patients having palliative care needs. Therefore, the provision of good end-of-life (EOL) care to these patients is a priority. However, research assessing staff preparedness for the provision of EOL care to hospitalized patients is lacking. To assess health-care professionals' self-perceived competencies regarding the provision of EOL care in hospitalized patients. Descriptive study of self-perceived EOL care competencies among health-care professionals. The study instrument (End-of-Life Questionnaire) contains 28 questions assessing knowledge, attitudes, and behaviors related to the provision of EOL care. Health-care professionals (nursing, medicine, social work, psychology, physical, occupational and respiratory therapist, and spiritual care) at a large academic medical center participated in the study. Means were calculated for each item, and comparisons of mean scores were conducted via t tests. Analysis of variance was used to identify differences among groups. A total of 1197 questionnaires was completed. The greatest self-perceived competency was in providing emotional support for patients/families, and the least self-perceived competency was in providing continuity of care. When compared to nurses, physicians had higher scores on EOL care attitudes, behaviors, and communication. Physicians and nurses had higher scores on most subscales than other health-care providers. Differences in self-perceived EOL care competencies were identified among disciplines, particularly between physicians and nurses. The results provide evidence for assessing health-care providers to identify their specific training needs before implementing educational programs on EOL care.

  10. The experience of providing end-of-life care to a relative with advanced dementia: an integrative literature review.

    Science.gov (United States)

    Peacock, Shelley C

    2013-04-01

    The number of people with dementia is growing at an alarming rate. An abundance of research over the past two decades has examined the complex aspects of caring for a relative with dementia. However, far less research has been conducted specific to the experiences of family caregivers providing end-of-life care, which is perplexing, as dementia is a terminal illness. This article presents what is known and highlights the gaps in the literature relevant to the experiences of family caregivers of persons with dementia at the end of life. A thorough search of the Cumulative Index to Nursing and Allied Health Literature (CINAHL) and PubMed databases from 1960 to 2011 was conducted. Ten studies were identified that specifically addressed the experience of family caregivers providing end-of-life care to a relative with advanced dementia. Common themes of these studies included: 1) the experience of grief, 2) guilt and burden with decision making, 3) how symptoms of depression may or may not be resolved with death of the care receiver, 4) how caregivers respond to the end-stage of dementia, and 5) expressed needs of family caregivers. It is evident from this literature review that much remains to be done to conceptualize the experience of end-of-life caregiving in dementia.

  11. The lived experience of family caregivers who provided end-of-life care to persons with advanced dementia.

    Science.gov (United States)

    Peacock, Shelley; Duggleby, Wendy; Koop, Priscilla

    2014-04-01

    Dementia is a terminal illness, and family caregivers play a vital role in providing end-of-life care to their relative. The present study begins to address the paucity of research regarding end-of-life caregiving experience with dementia. This study utilized Munhall's methodology for interpretive phenomenology. Seven women and four men were interviewed two to three times within a year of their relative's death; interviews were transcribed verbatim and hermeneutically analyzed. Findings reveal two essential aspects of end-of-life dementia caregiving: being-with and being-there. Further findings are organized according to the existential life worlds. Examination of the life worlds demonstrates that 1) spatiality provided a sense or lack of feeling welcome to provide end-of-life care; 2) temporality was an eternity or time melting away quickly, or the right or wrong time to die; 3) corporeality revealed feelings of exhaustion; and 4) relationality was felt as a closeness to others or in tension-filled relationships. An understanding from bereaved caregivers' perspectives will help healthcare practitioners better support and empathize with family caregivers. Further research is warranted that focuses on other places of death and differences in experience based on gender or relationship to the care receiver.

  12. Identifying the Types of Support Needed by Interprofessional Teams Providing Pediatric End-of-Life Care: A Thematic Analysis.

    Science.gov (United States)

    Riotte, Clare O; Kukora, Stephanie K; Keefer, Patricia M; Firn, Janice I

    2018-04-01

    Despite the number of interprofessional team members caring for children at the end of life, little evidence exists on how institutions can support their staff in providing care in these situations. We sought to evaluate which aspects of the hospital work environment were most helpful for multidisciplinary team members who care for patients at the end of life and identify areas for improvement to better address staff needs. Qualitative thematic analysis was completed of free-text comments from a survey distributed to interprofessional staff members involved in the care of a recently deceased pediatric patient. A total of 2701 surveys were sent; 890 completed. Free-text responses were provided by 306 interprofessional team members. Interprofessional team members involved in the care of a child who died at a 348 bed academic children's hospital in the Midwestern United States. Realist thematic analysis of free-text responses was completed in Dedoose using a deductive and inductive approach with line-by-line coding. Descriptive statistics of demographic information was completed using Excel. Thematic analysis of the 306 free-text responses identified three main support-related themes. Interprofessional team members desire to have (1) support through educational efforts such as workshops, (2) support from colleagues, and (3) support through institutional practices. Providers who participate in end-of-life work benefit from ongoing support through education, interpersonal relationships, and institutional practices. Addressing these areas from an interprofessional perspective enables staff to provide the optimal care for patients, patients' families, and themselves.

  13. Organizational capacities for 'residential care homes for the elderly' to provide culturally appropriate end-of-life care for Chinese elders and their families.

    Science.gov (United States)

    Kong, Sui-Ting; Fang, Christine Meng-Sang; Lou, Vivian Weiqun

    2017-01-01

    Developing culturally appropriate end-of-life care for Chinese elderly and families is not an endemic challenge for Hong Kong, but that of the Western countries with a noticeable trend of rising Chinese population. The particular development of Hong Kong healthcare system, which is currently the major provider of end-of-life care, makes Hong Kong a fruitful case for understanding the confluence of the West and the East cultures in end-of-life care practices. This study therefore aims at building our best practice to enhance the capacity of residential care homes in providing culturally appropriate end-of-life care. We conducted two phases of research, a questionnaire survey and a qualitative study, which respectively aims at (1) understanding the EoL care service demand and provision in RCHEs, including death facts and perceived barriers and challenges in providing quality end-of-life care in care homes, and (2) identifying the necessary organizational capacities for the 'relational personhood' to be sustained in the process of ageing and dying in residential care homes. Findings shed light on how to empower residential care homes with necessary environmental, structural and cultural-resource-related capacity for providing quality end-of-life care for Chinese elders and their families. Copyright © 2016 Elsevier Inc. All rights reserved.

  14. Emergency Nurses' Perceptions of Providing End-of-Life Care in a Hong Kong Emergency Department: A Qualitative Study.

    Science.gov (United States)

    Tse, Johnson Wai Keung; Hung, Maria Shuk Yu; Pang, Samantha Mei Che

    2016-05-01

    Provision of end-of-life (EOL) care in the emergency department has improved globally in recent years and has a different scope of interventions than traditional emergency medicine. In 2010, a regional hospital established the first ED EOL service in Hong Kong. The aim of this study was to understand emergency nurses' perceptions regarding the provision of EOL care in the emergency department. A qualitative approach was used with purposive sampling of 16 nurses who had experience in providing EOL care. Semi-structured, face-to-face interviews were conducted from May to October, 2014. All the interviews were transcribed verbatim for content analysis. Four themes were identified: (1) doing good for the dying patients, (2) facilitating family engagement and involvement, (3) enhancing personal growth and professionalism, and (4) expressing ambiguity toward resource deployment. Provision of EOL care in the emergency department can enhance patients' last moment of life, facilitate the grief and bereavement process of families, and enhance the professional development of staff in emergency department. It is substantiated that EOL service in the emergency department enriches EOL care in the health care system. Findings from this study integrated the perspectives on ED EOL services from emergency nurses. The integration of EOL service in other emergency departments locally and worldwide is encouraged. Copyright © 2016 Emergency Nurses Association. Published by Elsevier Inc. All rights reserved.

  15. End of Life (Hospice Care)

    Science.gov (United States)

    ... days of life. Meier DE, et al. Hospice: Philosophy of care and appropriate utilization in the United ... Care Organization. http://www.nhpco.org/hospice-statistics-research-press-room/facts-hospice-and-palliative-care. Accessed ...

  16. Developing graduate student competency in providing culturally sensitive end of life care in critical care environments - a pilot study of a teaching innovation.

    Science.gov (United States)

    Northam, Holly L; Hercelinskyj, Gylo; Grealish, Laurie; Mak, Anita S

    2015-11-01

    Australia's immigration policy has generated a rich diverse cultural community of staff and patients in critical care environments. Many different cultural perspectives inform individual actions in the context of critical care, including the highly sensitive area of end of life care, with nurses feeling poorly prepared to provide culturally sensitive end of life care. This article describes and evaluates the effectiveness of an educational innovation designed to develop graduate-level critical care nurses' capacity for effective interpersonal communication, as members of a multi-disciplinary team in providing culturally sensitive end-of-life care. A mixed method pilot study was conducted using a curriculum innovation intervention informed by The Excellence in Cultural Experiential Learning and Leadership Program (EXCELL),(1) which is a higher education intervention which was applied to develop the nurses' intercultural communication skills. 12 graduate nursing students studying critical care nursing participated in the study. 42% (n=5) of the participants were from an international background. Information about students' cultural learning was recorded before and after the intervention, using a cultural learning development scale. Student discussions of end of life care were recorded at Week 2 and 14 of the curriculum. The quantitative data was analysed using descriptive statistical analysis and qualitative data was thematically analysed. Students demonstrated an increase in cultural learning in a range of areas in the pre-post surveys including understandings of cultural diversity, interpersonal skills, cross cultural interactions and participating in multicultural groups. Thematic analysis of the end of life discussions revealed an increase in the levels of nurse confidence in approaching end of life care in critical care environments. The EXCELL program provides an effective and supportive educational framework to increase graduate nurses' cultural learning

  17. Policies to improve end-of-life decisions in Flemish hospitals: communication, training of health care providers and use of quality assessments

    Directory of Open Access Journals (Sweden)

    Noortgate Nele

    2009-12-01

    Full Text Available Abstract Background The prevalence and implementation of institutional end-of-life policies has been comprehensively studied in Flanders, Belgium, a country where euthanasia was legalised in 2002. Developing end-of-life policies in hospitals is a first step towards improving the quality of medical decision-making at the end-of-life. Implementation of policies through quality assessments, communication and the training and education of health care providers is equally important in improving actual end-of-life practice. The aim of the present study is to report on the existence and nature of end-of-life policy implementation activities in Flemish acute hospitals. Methods A cross-sectional mail survey was sent to all acute hospitals (67 main campuses in Flanders (Belgium. The questionnaire asked about hospital characteristics, the prevalence of policies on five types of end-of-life decisions: euthanasia, palliative sedation, alleviation of symptoms with possible life-shortening effect, do-not-resuscitate decision, and withdrawing or withholding of treatment, the internal and external communication of these policies, training and education on aspects of end-of-life care, and quality assessments of end-of-life care on patient and family level. Results The response rate was 55%. Results show that in 2007 written policies on most types of end-of-life decisions were widespread in acute hospitals (euthanasia: 97%, do-not-resuscitate decisions: 98%, palliative sedation: 79%. While standard communication of these policies to health care providers was between 71% and 91%, it was much lower to patients and/or family (between 17% and 50%. More than 60% of institutions trained and educated their caregivers in different aspects on end-of-life care. Assessment of the quality of these different aspects at patient and family level occurred in 25% to 61% of these hospitals. Conclusions Most Flemish acute hospitals have developed a policy on end-of-life practices

  18. Policies to improve end-of-life decisions in Flemish hospitals: communication, training of health care providers and use of quality assessments.

    Science.gov (United States)

    D'Haene, Ina; Vander Stichele, Robert H; Pasman, H Roeline W; Noortgate, Nele Van den; Bilsen, Johan; Mortier, Freddy; Deliens, Luc

    2009-12-30

    The prevalence and implementation of institutional end-of-life policies has been comprehensively studied in Flanders, Belgium, a country where euthanasia was legalised in 2002. Developing end-of-life policies in hospitals is a first step towards improving the quality of medical decision-making at the end-of-life. Implementation of policies through quality assessments, communication and the training and education of health care providers is equally important in improving actual end-of-life practice. The aim of the present study is to report on the existence and nature of end-of-life policy implementation activities in Flemish acute hospitals. A cross-sectional mail survey was sent to all acute hospitals (67 main campuses) in Flanders (Belgium). The questionnaire asked about hospital characteristics, the prevalence of policies on five types of end-of-life decisions: euthanasia, palliative sedation, alleviation of symptoms with possible life-shortening effect, do-not-resuscitate decision, and withdrawing or withholding of treatment, the internal and external communication of these policies, training and education on aspects of end-of-life care, and quality assessments of end-of-life care on patient and family level. The response rate was 55%. Results show that in 2007 written policies on most types of end-of-life decisions were widespread in acute hospitals (euthanasia: 97%, do-not-resuscitate decisions: 98%, palliative sedation: 79%). While standard communication of these policies to health care providers was between 71% and 91%, it was much lower to patients and/or family (between 17% and 50%). More than 60% of institutions trained and educated their caregivers in different aspects on end-of-life care. Assessment of the quality of these different aspects at patient and family level occurred in 25% to 61% of these hospitals. Most Flemish acute hospitals have developed a policy on end-of-life practices. However, communication, training and the education of health care

  19. How Community Clergy Provide Spiritual Care: Toward a Conceptual Framework for Clergy End-of-Life Education.

    Science.gov (United States)

    LeBaron, Virginia T; Smith, Patrick T; Quiñones, Rebecca; Nibecker, Callie; Sanders, Justin J; Timms, Richard; Shields, Alexandra E; Balboni, Tracy A; Balboni, Michael J

    2016-04-01

    Community-based clergy are highly engaged in helping terminally ill patients address spiritual concerns at the end of life (EOL). Despite playing a central role in EOL care, clergy report feeling ill-equipped to spiritually support patients in this context. Significant gaps exist in understanding how clergy beliefs and practices influence EOL care. The objective of this study was to propose a conceptual framework to guide EOL educational programming for community-based clergy. This was a qualitative, descriptive study. Clergy from varying spiritual backgrounds, geographical locations in the U.S., and race/ethnicities were recruited and asked about optimal spiritual care provided to patients at the EOL. Interviews were audio taped, transcribed, and analyzed following principles of grounded theory. A final set of themes and subthemes were identified through an iterative process of constant comparison. Participants also completed a survey regarding experiences ministering to the terminally ill. A total of 35 clergy participated in 14 individual interviews and two focus groups. Primary themes included Patient Struggles at EOL and Clergy Professional Identity in Ministering to the Terminally Ill. Patient Struggles at EOL focused on existential questions, practical concerns, and difficult emotions. Clergy Professional Identity in Ministering to the Terminally Ill was characterized by descriptions of Who Clergy Are ("Being"), What Clergy Do ("Doing"), and What Clergy Believe ("Believing"). "Being" was reflected primarily by manifestations of presence; "Doing" by subthemes of religious activities, spiritual support, meeting practical needs, and mistakes to avoid; "Believing" by subthemes of having a relationship with God, nurturing virtues, and eternal life. Survey results were congruent with interview and focus group findings. A conceptual framework informed by clergy perspectives of optimal spiritual care can guide EOL educational programming for clergy. Copyright

  20. Race, Income, and Education: Associations with Patient and Family Ratings of End-of-Life Care and Communication Provided by Physicians-in-Training

    Science.gov (United States)

    Engelberg, Ruth A.; Downey, Lois; Kross, Erin K.; Reinke, Lynn F.; Cecere Feemster, Laura; Dotolo, Danae; Ford, Dee W.; Back, Anthony L.; Curtis, J. Randall

    2014-01-01

    Abstract Background: Minority race and lower socioeconomic status are associated with poorer patient ratings of health care quality and provider communication. Objective: To examine the association of race/ethnicity or socioeconomic status with patients' and families' ratings of end-of-life care and communication about end-of-life care provided by physicians-in-training. Methods: As a component of a randomized trial evaluating a program designed to improve clinician communication about end-of-life care, patients and patients' families completed preintervention survey data regarding care and communication provided by internal medicine residents and medical subspecialty fellows. We examined associations between patient and family race or socioeconomic status and ratings they gave trainees on two questionnaires: the Quality of End-of-Life Care (QEOLC) and Quality of Communication (QOC). Results: Patients from racial/ethnic minority groups, patients with lower income, and patients with lower educational attainment gave trainees higher ratings on the end-of-life care subscale of the QOC (QOCeol). In path models, patient educational attainment and income had a direct effect on outcomes, while race/ethnicity did not. Lower family educational attainment was also associated with higher trainee ratings on the QOCeol, while family non-white race was associated with lower trainee ratings on the QEOLC and general subscale of the QOC. Conclusions: Patient race is associated with perceptions of the quality of communication about end-of-life care provided by physicians-in-training, but the association was opposite to our hypothesis and appears to be mediated by socioeconomic status. Family member predictors of these perceptions differ from those observed for patients. Further investigation of these associations may guide interventions to improve care delivered to patients and families. PMID:24592958

  1. Race, income, and education: associations with patient and family ratings of end-of-life care and communication provided by physicians-in-training.

    Science.gov (United States)

    Long, Ann C; Engelberg, Ruth A; Downey, Lois; Kross, Erin K; Reinke, Lynn F; Cecere Feemster, Laura; Dotolo, Danae; Ford, Dee W; Back, Anthony L; Curtis, J Randall

    2014-04-01

    Minority race and lower socioeconomic status are associated with poorer patient ratings of health care quality and provider communication. To examine the association of race/ethnicity or socioeconomic status with patients' and families' ratings of end-of-life care and communication about end-of-life care provided by physicians-in-training. As a component of a randomized trial evaluating a program designed to improve clinician communication about end-of-life care, patients and patients' families completed preintervention survey data regarding care and communication provided by internal medicine residents and medical subspecialty fellows. We examined associations between patient and family race or socioeconomic status and ratings they gave trainees on two questionnaires: the Quality of End-of-Life Care (QEOLC) and Quality of Communication (QOC). Patients from racial/ethnic minority groups, patients with lower income, and patients with lower educational attainment gave trainees higher ratings on the end-of-life care subscale of the QOC (QOCeol). In path models, patient educational attainment and income had a direct effect on outcomes, while race/ethnicity did not. Lower family educational attainment was also associated with higher trainee ratings on the QOCeol, while family non-white race was associated with lower trainee ratings on the QEOLC and general subscale of the QOC. Patient race is associated with perceptions of the quality of communication about end-of-life care provided by physicians-in-training, but the association was opposite to our hypothesis and appears to be mediated by socioeconomic status. Family member predictors of these perceptions differ from those observed for patients. Further investigation of these associations may guide interventions to improve care delivered to patients and families.

  2. [Providing information to patient's families on the end of life process in the intensive care unit. Nursing evaluation].

    Science.gov (United States)

    Pascual-Fernández, M Cristina

    2014-01-01

    Informing is a process that includes many aspects and when it involves a family member at the end of life it becomes a complicated matter, not only for giving the information, but also for the mood of family members. Thus, the information should be adapted to the language and education of the patient and family. That information must be proper and suitable to the moment. To describe the aspects of information offered to relatives of patients in the end of life process in Intensive Care Units (ICU), and to determine the nursing evaluation in this process. To evaluate the professionals' attitude on this subject. An observational study conducted on nurses in pediatric and adult ICU nurses of a large public health hospital complexes in the city of Madrid. The data was collected using a questionnaire on the evaluation of care of children who died in pediatric ICU. The majority of the nurses, 71% (159), said that the information was given in a place alone with the doctor. More than half (52.4%, 118) considered that the information was sufficient/insufficient depending on the day. Significant differences were found as regards the behavior of the staff at the time of a death in (P<.01), with pediatric ICU professionals being more empathetic. ICU nurses believe that the information is appropriate for the prognosis and adapted to the patient situation. They also consider the place where the information is given and the attitude of the professionals in the end of life process are adequate. Copyright © 2013 Elsevier España, S.L. All rights reserved.

  3. End of life care - the importance of culture and ethnicity.

    Science.gov (United States)

    Clark, Katherine; Phillips, Jane

    2010-04-01

    Australia is a culturally and ethnically diverse country. Within such diversity there will be differing beliefs systems about death and dying. This may be a challenging prospect for health professionals. This article discusses how cultural diversity may impact care and provides some strategies for the general practitioner when considering the provision of end of life care. This article does not attempt to provide GPs with a prescriptive approach to multicultural care, as this would run the risk of stereotyping individuals. Rather, it discusses the barriers to end of life care among different cultural and ethnic groups, and suggests ways in which to improve understanding of different cultural needs in end of life care.

  4. Staff preparedness for providing palliative and end-of-life care in long-term care homes: Instrument development and validation.

    Science.gov (United States)

    Chan, Helen Yl; Chun, Gloria Km; Man, C W; Leung, Edward Mf

    2018-05-01

    Although much attention has been on integrating the palliative care approach into services of long-term care homes for older people living with frailty and progressive diseases, little is known about the staff preparedness for these new initiatives. The present study aimed to develop and test the psychometric properties of an instrument for measuring care home staff preparedness in providing palliative and end-of-life care. A 16-item instrument, covering perceived knowledge, skill and psychological readiness, was developed. A total of 247 staff members of different ranks from four care homes participated in the study. Exploratory factor analysis using the principal component analysis extraction method with varimax rotation was carried out for initial validation. Known group comparison was carried out to examine its discriminant validity. Reliability of the instrument was assessed based on test-retest reliability of a subsample of 20 participants and the Cronbach's alpha of the items. Exploratory factor analysis showed that the instrument yielded a three-factor solution, which cumulatively accounted for 68.5% of the total variance. Three subscales, namely, willingness, capability and resilience, showed high internal consistency and test-retest reliability. It also showed good discriminant validity between staff members of professional and non-professional groups. This is a brief, valid and reliable scale for measuring care home staff preparedness for providing palliative and end-of-life care. It can be used to identify their concerns and training needs in providing palliative and end-of-life care, and as an outcome measure to evaluate the effects of interventional studies for capacity building in this regard. Geriatr Gerontol Int 2018; 18: 745-749. © 2018 Japan Geriatrics Society.

  5. End-of-life care: Indian perspective

    Science.gov (United States)

    Sharma, Himanshu; Jagdish, Vankar; Anusha, Prabhakaran; Bharti, Sharma

    2013-01-01

    According to Hinduism, the main religion of India, the end-of-life (EOL) deals with good and bad death. The WHO definition of palliative care stresses on improving not only the quality of life of patients facing incurable diseases but also their families by providing relief from the pain and suffering that includes the psychosocial and spiritual needs as well. The Indian Society of Palliative Care has been doing a commendable work and appreciable efforts are being done by the Kerala model of delivering the EOL care. The spiritual, ethical issues and ethical challenges raised when the patients are in terminal phase are also reviewed keeping in mind the socio-cultural norms. The Indian Penal Code (IPC) has lacunae, which hamper the physicians from taking proper decision in the EOL care. Some of the sections like IPC 309 are defunct and need to be changed. The Indian Society for Critical Care Medicine has developed a position statement on the patient management of the terminally ill patient in the Intensive Care Unit (ICU) which states that the society should move from the paternalistic model to the share based decision model of the West when deciding the fate of such patients. The literature review on the Indian research on palliative care shows very little emphatic results and the medical under graduates show illiteracy. To strengthen it Medical Council of India has included the palliative care in its curriculum by starting a PG course. Literature review revealed that more research from Indian perspective should be done in this area. This article studies the core issues of developing palliative care in Indian setting keeping in mind the ethical, spiritual and legal issues. PMID:23858271

  6. [Our Experience of Providing Home End-of-Life Care for a Child with a Brain Tumor - Overview of Issues Including Environmental Adjustment and Family Care].

    Science.gov (United States)

    Ohashi, Kota; Kayama, Makiko; Ryuuo, Shoko; Suzuki, Jun; Hayashinoshita, Yutaka; Ooka, Shiho; Matsuura, Rie

    2015-12-01

    We provided home end-of-life care to a child with a brain tumor. As cases of children with malignancies who receive such care have rarely been described in Japan, we report our experience with this patient. An 11-year-old previously healthy boy was found to have a brainstem glioma in December X. The tumor was reduced by radiotherapy and chemotherapy, but relapse was noted in August X plus 1. Best supportive care alone was selected for this patient. Before the initiation of home care, we consulted a designated hospital for pediatric cancer treatment in the area and requested a case- worker from the child/home section in his resident area. As the patient was too young for long-term care insurance, we immediately applied for a physical disability certificate to augment welfare support. After the initiation of home care, swallowing function diminished markedly, but we provided guidance on dietary contents and suction, allowing continued oral ingestion by prioritizing his and his family's wishes. In January X plus 2 of the following year, his respiratory condition worsened after the development of aspiration pneumonitis, and he died at home. We advocate the establishment of a regional network so that children with brain tumors can receive end-of-life care at home.

  7. Providing End-Of-Life Care in Disability Community Living Services: An Organizational Capacity-Building Model Using a Public Health Approach

    Science.gov (United States)

    Grindrod, Andrea; Rumbold, Bruce

    2017-01-01

    Background: There is broad consensus within the disability field that the end-of-life care offered to people with intellectual disabilities should be of a quality consistent with that advocated by contemporary palliative care. In practice, however, various barriers are encountered when applying palliative care strategies to the end-of-life care of…

  8. Definition of Terms Used in Limitation of Treatment and Providing Palliative Care at the End of Life: The Indian Council of Medical Research Commission Report

    Science.gov (United States)

    Salins, Naveen; Gursahani, Roop; Mathur, Roli; Iyer, Shivakumar; Macaden, Stanley; Simha, Nagesh; Mani, Raj Kumar; Rajagopal, M. R.

    2018-01-01

    Background: Indian hospitals, in general, lack policies on the limitation of inappropriate life-sustaining interventions at the end of life. To facilitate discussion, preparation of guidelines and framing of laws, terminologies relating to the treatment limitation, and providing palliative care at the end-of-life care (EOLC) need to be defined and brought up to date. Methodology: This consensus document on terminologies and definitions of terminologies was prepared under the aegis of the Indian Council of Medical Research. The consensus statement was created using Nominal Group and Delphi Method. Results: Twenty-five definitions related to the limitations of treatment and providing palliative care at the end of life were created by reviewing existing international documents and suitably modifying it to the Indian sociocultural context by achieving national consensus. Twenty-five terminologies defined within the scope of this document are (1) terminal illness, (2) actively dying, (3) life-sustaining treatment, (4) potentially inappropriate treatment, (5) cardiopulmonary resuscitation (CPR), (6) do not attempt CPR, (7) withholding life-sustaining treatment, (8) withdrawing life-sustaining treatment, (9) euthanasia (10) active shortening of the dying process, (11) physician-assisted suicide, (12) palliative care, (13) EOLC, (14) palliative sedation, (15) double effect, (16) death, (17) best interests, (18) health-care decision-making capacity, (19) shared decision-making, (20) advance directives, (21) surrogates, (22) autonomy, (23) beneficence, (24) nonmaleficence, and (25) justice.

  9. Networking to improve end of life care

    Science.gov (United States)

    2009-01-01

    Network organisations are increasingly common in healthcare. This paper describes an example of clinically led networking, which improved end of life care (EOLC) in care homes, differentiating between a ‘network’ as a formal entity and the more informal process of ‘networking’. The paper begins with a brief discussion of networks and their development in healthcare, then an overview of EOLC policy, the case setting and methods. The paper describes four key features of this networking; (1) how it enabled discussions and implemented processes to help people address difficult taboos about dying; (2) how personal communication and ‘distributed leadership’ facilitated learning; (3) how EOLC occasionally lapsed during the handover of patient care, where personal relationship and communication were weaker; and (4) how successful learning and sharing of best practice was fragile and could be potentially undermined by wider financial pressures in the NHS. PMID:25949588

  10. Questioning care at the end of life.

    Science.gov (United States)

    Ruopp, Patricia; Good, Mary-Jo Delvecchio; Lakoma, Matthew; Gadmer, Nina M; Arnold, Robert M; Block, Susan D

    2005-06-01

    The goal of the larger study was to explore physicians' emotional responses to the death of their patients; this study analyzed a subset of physician transcripts to elucidate the construct of questioning care, which emerged from the larger study. To analyzes how physicians question care-expressing concern, unease, or uncertainty about treatment decisions and practices, errors, or adverse events-as they attend dying patients. Retrospective interview study of physicians caring for randomly selected deaths on the medical service of a major academic teaching hospital, using qualitative and quantitative measures. SETTING, SUBJECTS: 188 attendings, residents, and interns on the internal medical services of two academic medical centers were part of the larger study. A subsample of 75 physician narratives was selected for qualitative data analysis for this study. Qualitative measures included open-ended questions eliciting physicians' stories of the most recent and a most emotionally powerful patient death they have experienced. Grounded theory was used to analyze physician narratives. Quantitative instruments measured physician attitudes toward end-of-life care and responses to the most recent and most emotional patient death. Physicians question care more frequently in most emotional deaths (42%) than in most recent deaths (34%). Physicians question communication with patients and families and within medical teams, medical judgment and technique, standards of practice, and high-risk treatments, often assigning responsibility for medical management they perceive as inappropriate, futile, overly aggressive, or mistakes in judgment and technique. Responsibility ranges from the distal (the culture of medicine) to the proximal (personal). Frustration, guilt, and anger are more frequently expressed in these narratives when care is questioned. A typology of questioning care emerged from these physicians' narratives that parallels and reflects recent and classic research on

  11. [End-of-life care and end-of-life medical decisions: the ITAELD study].

    Science.gov (United States)

    Miccinesi, Guido; Puliti, Donella; Paci, Eugenio

    2011-01-01

    To describe the attitudes towards end of life care and the practice of end-of-life medical decisions with possible life-shortening effect among Italian physicians. Cross sectional study (last death among the assisted patients in the last 12 months was considered). In the year 2007, 5,710 GPs and 8,950 hospital physicians were invited all over Italy to participate in the ITAELDstudy through anonymous mail questionnaire. Proportion of agreement with statements on end-of-life care issues. Proportion of deaths with an end-of-life medical decision. The response rate was 19.2%. The 65% of respondents agreed with the duty to respect any non-treatment request of the competent patient, the 55% agreed with the same duty in case of advanced directives, the 39% in case of proxy's request. The 53% of respondents agreed with the ethical acceptability of active euthanasia in selected cases. Among 1,850 deaths the 57.7% did not receive any end-of-life medical decision. For a further 21.0% no decision was possible, being sudden and unexpected deaths. In the remaining 21.3% at least one end-of-life medical decision was reported: 0.8% was classified as physician assisted death, 20.5% as non-treatment decision. Among all deceased the 19.6% were reported to have been deeply sedated. Being favourable to the use of opioids in terminal patients was associated to non-treatment decisions with possible but non-intentional life shortening effect; agreeing with the duty to fully respect any actual non-treatment request of the competent patient was associated to end-of life medical decisions with intentional life-shortening effect (adjusted OR>10 in both cases). The life stance and ethical beliefs of physicians determine their behaviour at the end of life wherever specific statements of law are lacking. Therefore education and debate are needed on these issues.

  12. Improving end-of-life care: Recommendations from the IOM.

    Science.gov (United States)

    Dobbins, Elizabeth H

    2016-09-22

    A 2014 consensus report by the Institute of Medicine offers recommendations for healthcare providers to decrease unwanted care and improve the quality of life at the end of life. This article discusses the recommendations of interest to advanced practice registered nurses.

  13. A Systematic Review of End-of-Life Care Communication Skills Training for Generalist Palliative Care Providers: Research Quality and Reporting Guidance.

    Science.gov (United States)

    Brighton, Lisa Jane; Koffman, Jonathan; Hawkins, Amy; McDonald, Christine; O'Brien, Suzanne; Robinson, Vicky; Khan, Shaheen A; George, Rob; Higginson, Irene J; Selman, Lucy Ellen

    2017-09-01

    End-of-life care (EoLC) communication skills training for generalist palliative care providers is recommended in policy guidance globally. Although many training programs now exist, there has been no comprehensive evidence synthesis to inform future training delivery and evaluation. To identify and appraise how EoLC communication skills training interventions for generalist palliative care providers are developed, delivered, evaluated, and reported. Systematic review. Ten electronic databases (inception to December 2015) and five relevant journals (January 2004 to December 2015) were searched. Studies testing the effectiveness of EoLC communication skills training for generalists were included. Two independent authors assessed study quality. Descriptive statistics and narrative synthesis are used to summarize the findings. From 11,441 unique records, 170 reports were identified (157 published, 13 unpublished), representing 160 evaluation studies of 153 training interventions. Of published papers, eight were of low quality, 108 medium, and 41 high. Few interventions were developed with service user involvement (n = 7), and most were taught using a mixture of didactics (n = 123), reflection and discussion (n = 105), and role play (n = 86). Evaluation designs were weak: communication skills training interventions in the literature, evidence is limited by poor reporting and weak methodology. Based on our findings, we present a CONSORT statement supplement to improve future reporting and encourage more rigorous testing. Copyright © 2017 The Author(s). Published by Elsevier Inc. All rights reserved.

  14. Palliative and end-of-life care in South Dakota.

    Science.gov (United States)

    Minton, Mary E; Kerkvliet, Jennifer L; Mitchell, Amanda; Fahrenwald, Nancy L

    2014-05-01

    Geographical disparities play a significant role in palliative and end-of-life care access. This study assessed availability of palliative and end of life (hospice) care in South Dakota. Grounded in a conceptual model of advance care planning, this assessment explored whether South Dakota health care facilities had contact persons for palliative care, hospice services, and advance directives; health care providers with specialized training in palliative and hospice care; and a process for advance directives and advance care planning. Trained research assistants conducted a brief telephone survey. Of 668 health care eligible facilities, 455 completed the survey for a response rate of 68 percent (455 out of 668). Over one-half of facilities had no specific contact person for palliative care, hospice services and advance directives. Nursing homes reported the highest percentage of contacts for palliative care, hospice services and advance directives. Despite a lack of a specific contact person, nearly 75 percent of facilities reported having a process in place for addressing advance directives with patients; slightly over one-half (53 percent) reported having a process in place for advance care planning. Of participating facilities, 80 percent had no staff members with palliative care training, and 73 percent identified lack of staff members with end-of-life care training. Palliative care training was most commonly reported among hospice/home health facilities (45 percent). The results of this study demonstrate a clear need for a health care and allied health care workforce with specialized training in palliative and end-of-life care.

  15. Family caregiver learning--how family caregivers learn to provide care at the end of life: a qualitative secondary analysis of four datasets.

    Science.gov (United States)

    Stajduhar, Kelli I; Funk, Laura; Outcalt, Linda

    2013-07-01

    Family caregivers are assuming growing responsibilities in providing care to dying family members. Supporting them is fundamental to ensure quality end-of-life care and to buffer potentially negative outcomes, although family caregivers frequently acknowledge a deficiency of information, knowledge, and skills necessary to assume the tasks involved in this care. The aim of this inquiry was to explore how family caregivers describe learning to provide care to palliative patients. Secondary analysis of data from four qualitative studies (n = 156) with family caregivers of dying people. Data included qualitative interviews with 156 family caregivers of dying people. Family caregivers learn through the following processes: trial and error, actively seeking needed information and guidance, applying knowledge and skills from previous experience, and reflecting on their current experiences. Caregivers generally preferred and appreciated a supported or guided learning process that involved being shown or told by others, usually learning reactively after a crisis. Findings inform areas for future research to identify effective, individualized programs and interventions to support positive learning experiences for family caregivers of dying people.

  16. End-of-life decisions in the intensive care unit

    DEFF Research Database (Denmark)

    Jensen, Hanne Irene

    2012-01-01

    be interdisciplinary, but the literature shows that this is not always the case. Research on end-of-life issues in Danish ICUs is limited. Aim The aims of this thesis were to • Examine Danish practices regarding end-of-life decisions in the ICU. • Examine the opinions of nurses and physicians who work in Danish ICUs...... and decision-making. Hypotheses • Nurses, intensivists, and primary physicians have different experiences of interdisciplinary collaboration regarding end-of-life decision-making in the ICU. • Specific interventions targeting end-of-life decision-making in the ICU, such as interdisciplinary audits......Background When making end-of-life decisions in intensive care units, the different staff groups have different roles in the decision-making process and may not always assess the situation identically. Practice recommendations for withholding or withdrawing therapy state that decisions should...

  17. Supporting family carers providing end-of-life home care: a qualitative study on the impact of a hospice at home service.

    Science.gov (United States)

    Jack, Barbara A; O'Brien, Mary R; Scrutton, Joyce; Baldry, Catherine R; Groves, Karen E

    2015-01-01

    To explore bereaved family carers' perceptions and experiences of a hospice at home service. The increasing demand for the development of home-based end-of-life services is not confined to the western world; such services are also emerging in resource-poor countries where palliative care services are developing with limited inpatient facilities. Despite this growing trend, studies show a variety of interrelated factors, with an emphasis on the availability of informal carers and their ability to cope, which can influence whether terminally ill patients actually remain at home. A hospice at home service was developed to meet patients' and families' needs by providing individually tailored resources. A qualitative study. Data were collected by semi-structured, digitally recorded interviews from 20 family carers who had experienced the service. Interviews were transcribed verbatim and a thematic approach adopted for analysis. All participants reported a personal positive impact of the service. Family carers commented the service provided a valued presence, they felt in good hands and importantly it helped in supporting normal life. The impact of an individualised, targeted, hospice at home service using dedicated, palliative care trained, staff, is perceived positively by family carers and importantly, supportive of those with additional caring or employment commitments. The emergence of hospice at home services has resulted in more options for patients and their families, when the increased amount of care a family member has to provide in these circumstances needs to be adequately supported, with the provision of a flexible service tailored to individual needs and delivered by appropriately trained staff. © 2014 The Authors. Journal of Clinical Nursing Published by John Wiley & Sons Ltd.

  18. End-of-Life Nursing Care and Education: End-of-Life Nursing Education: Past and Present.

    Science.gov (United States)

    DʼAntonio, Jocelyn

    The dying experience is forever carried in the life story of those for whom the nurse cares. A goal of end-of-life nursing education is to produce nurses who are comfortable with death and dying and who have had the opportunity to reflect on their thoughts and feelings about end-of-life care. This article reviews the history, development, and teaching methods of end-of-life care, offering recommendations for future education.

  19. Spirituality in cancer care at the end of life.

    Science.gov (United States)

    Ferrell, Betty; Otis-Green, Shirley; Economou, Denice

    2013-01-01

    There is a compelling need to integrate spirituality into the provision of quality palliative care by oncology professionals. Patients and families report the importance of spiritual, existential, and religious concerns throughout the cancer trajectory. Leading palliative care organizations have developed guidelines that define spiritual care and offer recommendations to guide the delivery of spiritual services. There is growing recognition that all team members require the skills to provide generalist spiritual support. Attention to person-centered, family-focused oncology care requires the development of a health care environment that is prepared to support the religious, spiritual, and cultural practices preferred by patients and their families. These existential concerns become especially critical at end of life and following the death for family survivors. Oncology professionals require education to prepare them to appropriately screen, assess, refer, and/or intervene for spiritual distress.

  20. Good end-of-life care according to patients and their GPs

    NARCIS (Netherlands)

    Borgsteede, Sander D.; Graafland-Riedstra, Corrie; Deliens, Luc; Francke, Anneke L.; van Eijk, Jacques ThM; Willems, Dick L.

    2006-01-01

    BACKGROUND: Most patients prefer to die at home, where a GP provides end-of-life care. A few previous studies have been directed at the GPs' values on good end-of-life care, yet no study combined values of patients and their own GP. AIM: To explore the aspects valued by both patients and GPs in

  1. Good end-of-life care according to patients and their GPs.

    NARCIS (Netherlands)

    Borgsteede, S.D.; Graafland-Riedstra, C.; Deliens, L.; Francke, A.L.; Eijk, J.T.M. van; Willems, D.L.

    2006-01-01

    Background: Most patients prefer to die at home, where a GP provides end-of-life care. A few previous studies have been directed at the GPs' values on good end-of-life care, yet no study combined values of patients and their own GP. Aim: To explore the aspects valued by both patients and GPs in

  2. [End-of-Life Care in Intensive Care Units: Nursing strategies of family involvement at the end of life].

    Science.gov (United States)

    Cyrol, Katharina; Fröhlich, Martin R; Piatti, Francesca; Imhof, Lorenz

    2018-06-01

    Background: Family members of people dying in the intensive care unit (ICU) are exposed to many stress factors and they often do not experience involvement in End-of-Life (EoL) situations. For example, they criticize a low degree of participation in patients care, delayed or incomplete information and lack of privacy. Even nursing staff is facing various obstacles in EoL situations in ICUs. Aim: This study investigates strategies used by ICU nursing staff in German-speaking Switzerland to increase family members participation in situations at the end of life. Method: Data was collected by conducting 12 semi-structured interviews using an approach based on Grounded Theory. A model was developed to explain nursing strategies for family involvement in EoL situations in the ICU. Conclusions: Nurses provide personal space and tranquillity for family members and allow them to be present at any time. Against this background, they support family members and enable them to say goodbye consciously to a loved one. Subsequent work should examine the effectiveness of the strategies described, particularly in terms of stress reactions displayed by family members in the aftermath of EoL situations. In practice, family members should be provided space for privacy. The entire healthcare team is recommended to identify and pursue common values and objectives. Moreover, intradisciplinary exchange and mentoring need to be encouraged. In order to prepare future nursing staff for EoL situations in the ICU, recognizing and promoting their educational skills is mandatory.

  3. Interviews on end-of-life care with older people: reflections on six european studies

    NARCIS (Netherlands)

    Pleschberger, S.; Seymour, J.E.; Payne, S.; Deschepper, R.; Onwuteaka-Philipsen, B.D.; Rurup, M.L.

    2011-01-01

    Qualitative research provides important insights into the experiences and perspectives of older people on end-of-life issues, but such research is methodologically and ethically complex. We offer a set of reflections from six end-of-life care studies conducted with older people in four European

  4. Three factors critical for end-of-life care.

    Science.gov (United States)

    Franey, S G

    1996-01-01

    Appropriate care of persons with life-threatening illnesses requires a different, perhaps higher level of response from organized healthcare than has been typical in the past. This involves three critical components: Leaders must be committed, visible advocates of high-quality end-of-life care. This enables them to plan changes, deploy resources, and integrate this commitment throughout the organization's strategic plan. Ensuring appropriate care of the dying requires adequate human and financial resources. First, the organization must fully identify the educational and service needs of patients, families, and care givers experiencing life-threatening illnesses. The organization must work well with other community-based organizations to address identified needs. Senior managers can improve care by personally commissioning teams, acknowledging success, and rewarding performance. Finally, organizational goals, strategies, and performance objectives must be shaped by a commitment to ensure appropriate care of the dying. Our commitment to the dying must be based on our values. An organizational "statement of rights and responsibilities" is one way of providing a visible expression of the mission, core values, and mutual responsibilities among care givers and patients, residents, HMO members, and clients.

  5. Pain and symptom management in palliative care and at end of life.

    Science.gov (United States)

    Wilkie, Diana J; Ezenwa, Miriam O

    2012-01-01

    The purpose of this review is to provide a literature update of the research published since 2004 on pain and symptom management in palliative care and at end of life. Findings suggest that pain and symptoms are inadequately assessed and managed, even at the end of life. Although not pervasive, there is evidence of racial/ethnic disparities in symptom management in palliative care and at end of life. There is a need for a broader conceptualization and measurement of pain and symptom management as multidimensional experiences. There is insufficient evidence about mechanisms underlying pain at end of life. Although there are advances in the knowledge of pain as a multidimensional experience and the many symptoms that occur sometimes with pain, gaps remain. One approach to addressing the gaps will involve assessment and management of pain and symptoms as multidimensional experiences in people receiving palliative care and at end of life. Copyright © 2012 Elsevier Inc. All rights reserved.

  6. [Precarity, vulnerability, anticipating end-of-life care at home].

    Science.gov (United States)

    Bonneval, Camille

    2016-02-01

    Many patients want to end their life at home. Care teams adapt to these wishes and organise a form of treatment which blends safety of care and the respect of the expectations of the patients and family members. When factors of precarity increase the vulnerability inherent to the end of life, caregivers anticipate and support as best as they can the difficulties encountered as testified by a hospital at home team in Dax. Copyright © 2015 Elsevier Masson SAS. All rights reserved.

  7. Use of Simulation in End-of-Life Care Education.

    Science.gov (United States)

    Grabow, Debra

    Death and dying encompasses the period when individuals present with a limited prognosis and are near death or have recently died. Using simulation to educate nurses on end-of-life (EOL) care helps focus more on the needs of the learner rather than the patient, and allows the learner to process feelings in preparation for a real experience. Incorporating simulation with a spiritual perspective is essential and needed in EOL nursing care.

  8. Doctors' learning experiences in end-of-life care

    DEFF Research Database (Denmark)

    Fosse, Anette; Ruths, Sabine; Malterud, Kirsti

    2017-01-01

    death could even be welcomed. Through challenging dialogues dealing with family members’ hope and trust, they learnt how to adjust words and decisions according to family and patient’s life story. Interdisciplinary role models helped them balance uncertainty and competence in the intermediate position......Background: Doctors often find dialogues about death difficult. In Norway, 45% of deaths take place in nursing homes. Newly qualified medical doctors serve as house officers in nursing homes during internship. Little is known about how nursing homes can become useful sites for learning about end-of-life...... care. The aim of this study was to explore newly qualified doctors’ learning experiences with end-of-life care in nursing homes, especially focusing on dialogues about death. Methods: House officers in nursing homes (n = 16) participated in three focus group interviews. Interviews were audiotaped...

  9. [Organising and supporting the end of life when faced with a refusal of care].

    Science.gov (United States)

    Rautureau, Pascal

    2018-04-01

    Often ethically complex, end-of-life situations can mean nursing teams are confronted with a refusal of care. Through a representative clinical situation, a nurse describes the support provided by a multidisciplinary team, in the home, to comply with the wishes of a person at the end of life, support the family, anticipate possible difficulties and organise adapted care which respects all those concerned. Copyright © 2018 Elsevier Masson SAS. All rights reserved.

  10. Hospital executive leadership: a critical component for improving care at the end of life.

    Science.gov (United States)

    Cooney, James P; Landers, Glenn M; Williams, Julianna M

    2002-01-01

    End-of-life care and its planning by individuals, in concert with their families and professional healthcare givers, pose important social, legal, and ethical issues. The authors evaluate the results of a multi-year (1997-2001) collaborative effort among representatives of Georgia healthcare providers, healthcare payers, and the general public that was designed to (a) improve end-of-life care through a community-focused field effort to increase public awareness, execution, and institutional management of advance directives and (b) impact institutional and state government systems and policies around end-of-life care. The authors conclude that a proactive presence of senior management is integral in implementing systematic change in hospital-based end-of-life care and offer practical recommendations to hospital leaders to affect real change in their institutions.

  11. End-of-Life Care Interventions: An Economic Analysis.

    Science.gov (United States)

    Pham, B; Krahn, M

    2014-01-01

    The annual cost of providing care for patients in their last year of life is estimated to account for approximately 9% of the Ontario health care budget. Access to integrated, comprehensive support and pain/symptom management appears to be inadequate and inequitable. To evaluate the cost-effectiveness of end-of-life (EoL) care interventions included in the EoL care mega-analysis. Multiple sources were used, including systematic reviews, linked health administration databases, survey data, planning documents, expert input, and additional literature searches. We conducted a literature review of cost-effectiveness studies to inform the primary economic analysis. We conducted the primary economic analysis and budget impact analysis for an Ontario cohort of decedents and their families and included interventions pertaining to team-based models of care, patient care planning discussions, educational interventions for patients and caregivers, and supportive interventions for informal caregivers. The time horizon was the last year of life. Costs were in 2013 Canadian dollars. Effectiveness measures included days at home, percentage dying at home, and quality-adjusted life-days. We developed a Markov model; model inputs were obtained from a cohort of Ontario decedents assembled from Institute for Clinical Evaluative Sciences databases and published literature. In-home palliative team care was cost-effective; it increased the chance of dying at home by 10%, increased the average number of days at home (6 days) and quality-adjusted life-days (0.5 days), and it reduced costs by approximately $4,400 per patient. Expanding in-home palliative team care to those currently not receiving such services (approximately 45,000 per year, at an annual cost of $76-108 million) is likely to improve quality of life, reduce the use of acute care resources, and save $191-$385 million in health care costs. Results for the other interventions were uncertain. The cost-effectiveness analysis was

  12. How Islam Influences End-of-Life Care: Education for Palliative Care Clinicians.

    Science.gov (United States)

    Leong, Madeline; Olnick, Sage; Akmal, Tahara; Copenhaver, Amanda; Razzak, Rab

    2016-12-01

    According to the Joint Commission, cultural competency is a core skill required for end-of-life care. Religious and cultural beliefs predominantly influence patients' lives, especially during the dying process. Therefore, palliative care clinicians should have at least a basic understanding of major world religions. Islam is a major world religion with 1.7 billion followers. At our institution, a needs assessment showed a lack of knowledge with Islamic teachings regarding end-of-life care. To improve knowledge of clinically relevant Islamic teachings regarding end-of-life care. After consultation with a Muslim chaplain, we identified key topics and created a 10-question pretest. The pretest was administered, followed by a one-hour educational intervention with a Muslim chaplain. Next, a post-test (identical to the pretest) was administered. Eleven palliative care clinicians participated in this study. The average score on the pretest was 6.0 ± 1.2 (mean + SD) (maximum 10). After the educational intervention, the average score improved to 9.6 ± 0.7 (95% CI 2.7-4.4; P Islam influences patients' end-of-life decisions. In this pilot study, a one-hour educational intervention improved knowledge of Islamic teachings regarding end-of-life care. We present a framework for this intervention, which can be easily replicated. We also provide key teaching points on Islam and end-of-life care. Additional research is necessary to determine the clinical effects of this intervention over time and in practice. In the future, we plan to expand the educational material to include other world religions. Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  13. 'End of life could be on any ward really': A qualitative study of hospital volunteers' end-of-life care training needs and learning preferences.

    Science.gov (United States)

    Brighton, Lisa Jane; Koffman, Jonathan; Robinson, Vicky; Khan, Shaheen A; George, Rob; Burman, Rachel; Selman, Lucy Ellen

    2017-10-01

    Over half of all deaths in Europe occur in hospital, a location associated with many complaints. Initiatives to improve inpatient end-of-life care are therefore a priority. In England, over 78,000 volunteers provide a potentially cost-effective resource to hospitals. Many work with people who are dying and their families, yet little is known about their training in end-of-life care. To explore hospital volunteers' end-of-life care training needs and learning preferences, and the acceptability of training evaluation methods. Qualitative focus groups. Volunteers from a large teaching hospital were purposively sampled. Five focus groups were conducted with 25 hospital volunteers (aged 19-80 years). Four themes emerged as follows: preparation for the volunteering role, training needs, training preferences and evaluation preferences. Many described encounters with patients with life-threatening illness and their families. Perceived training needs in end-of-life care included communication skills, grief and bereavement, spiritual diversity, common symptoms, and self-care. Volunteers valued learning from peers and end-of-life care specialists using interactive teaching methods including real-case examples and role plays. A chance to 'refresh' training at a later date was suggested to enhance learning. Evaluation through self-reports or observations were acceptable, but ratings by patients, families and staff were thought to be pragmatically unsuitable owing to sporadic contact with each. Gaps in end-of-life care training for hospital volunteers indicate scope to maximise on this resource. This evidence will inform development of training and evaluations which could better enable volunteers to make positive, cost-effective contributions to end-of-life care in hospitals.

  14. End of life could be on any ward really’: A qualitative study of hospital volunteers’ end-of-life care training needs and learning preferences

    Science.gov (United States)

    Brighton, Lisa Jane; Koffman, Jonathan; Robinson, Vicky; Khan, Shaheen A; George, Rob; Burman, Rachel; Selman, Lucy Ellen

    2017-01-01

    Background: Over half of all deaths in Europe occur in hospital, a location associated with many complaints. Initiatives to improve inpatient end-of-life care are therefore a priority. In England, over 78,000 volunteers provide a potentially cost-effective resource to hospitals. Many work with people who are dying and their families, yet little is known about their training in end-of-life care. Aims: To explore hospital volunteers’ end-of-life care training needs and learning preferences, and the acceptability of training evaluation methods. Design: Qualitative focus groups. Setting/participants: Volunteers from a large teaching hospital were purposively sampled. Results: Five focus groups were conducted with 25 hospital volunteers (aged 19–80 years). Four themes emerged as follows: preparation for the volunteering role, training needs, training preferences and evaluation preferences. Many described encounters with patients with life-threatening illness and their families. Perceived training needs in end-of-life care included communication skills, grief and bereavement, spiritual diversity, common symptoms, and self-care. Volunteers valued learning from peers and end-of-life care specialists using interactive teaching methods including real-case examples and role plays. A chance to ‘refresh’ training at a later date was suggested to enhance learning. Evaluation through self-reports or observations were acceptable, but ratings by patients, families and staff were thought to be pragmatically unsuitable owing to sporadic contact with each. Conclusion: Gaps in end-of-life care training for hospital volunteers indicate scope to maximise on this resource. This evidence will inform development of training and evaluations which could better enable volunteers to make positive, cost-effective contributions to end-of-life care in hospitals. PMID:28056642

  15. Diabetes and end of life: ethical and methodological issues in gathering evidence to guide care.

    Science.gov (United States)

    Dunning, Trisha; Duggan, Nicole; Savage, Sally; Martin, Peter

    2013-03-01

    Providing palliative care for people with diabetes at the end of life is part of the chronic disease care trajectory, but end of life care is complex and the presence of diabetes further complicates management. The aim of the paper is to discuss the ethical and methodological issues encountered when undertaking research to develop guidelines for managing diabetes at the end of life and the strategies used to address the issues. The issues emerged as we developed guidelines for managing diabetes at the end of life, which included conducting individual interviews with 14 people with diabetes requiring palliative care and 10 family members. A reflexive researcher journal was maintained throughout the guideline development process. The interview transcripts and researcher's journal were analysed to determine key methodological, ethical and researcher-related issues. Key themes were vulnerability of the sampling population, methodological issues included recruiting participants and ensuring rigor, ethical issues concerned benefit and risk, justice, autonomy, privacy, professional boundaries and informed consent. Researcher-related issues were identified such as managing participant distress and their own emotional distress. People were willing to discuss end of life diabetes management preferences. Undertaking research with people at the end of life is complex because of their vulnerability and the ethical issues involved. However, the ethical principles of autonomy and justice apply and people should be given the relevant information and opportunity to decide whether to participate or not. © 2012 The Authors. Scandinavian Journal of Caring Sciences © 2012 Nordic College of Caring Science.

  16. Occupational Variation in End-of-Life Care Intensity.

    Science.gov (United States)

    Hyder, Joseph A; Haring, R Sterling; Sturgeon, Daniel; Gazarian, Priscilla K; Jiang, Wei; Cooper, Zara; Lipsitz, Stuart R; Prigerson, Holly G; Weissman, Joel S

    2018-03-01

    End-of-life (EOL) care intensity is known to vary by secular and geographic patterns. US physicians receive less aggressive EOL care than the general population, presumably the result of preferences shaped by work-place experience with EOL care. We investigated occupation as a source of variation in EOL care intensity. Across 4 states, we identified 660 599, nonhealth maintenance organization Medicare beneficiaries aged ≥66 years who died between 2004 and 2011. Linking death certificates, we identified beneficiaries with prespecified occupations: nurses, farmers, clergy, mortuary workers, homemakers, first-responders, veterinary workers, teachers, accountants, and the general population. End-of-life care intensity over the last 6 months of life was assessed using 5 validated measures: (1) Medicare expenditures, rates of (2) hospice, (3) surgery, (4) intensive care, and (5) in-hospital death. Occupation was a source of large variation in EOL care intensity across all measures, before and after adjustment for sex, education, age-adjusted Charlson Comorbidity Index, race/ethnicity, and hospital referral region. For example, absolute and relative adjusted differences in expenditures were US$9991 and 42% of population mean expenditure ( P EOL care intensity measures, teachers (5 of 5), homemakers (4 of 5), farmers (4 of 5), and clergy (3 of 5) demonstrated significantly less aggressive care. Mortuary workers had lower EOL care intensity (4 of 5) but small numbers limited statistical significance. Occupations with likely exposure to child development, death/bereavement, and naturalistic influences demonstrated lower EOL care intensity. These findings may inform patients and clinicians navigating choices around individual EOL care preferences.

  17. A Thematic Literature Review: The Importance of Providing Spiritual Care for End-of-Life Patients Who Have Experienced Transcendence Phenomena.

    Science.gov (United States)

    Broadhurst, Kathleen; Harrington, Ann

    2016-11-01

    The purpose of this review was to investigate within the literature the link between transcendent phenomena and peaceful death. The objectives were firstly to acknowledge the importance of such experiences and secondly to provide supportive spiritual care to dying patients. Information surrounding the aforementioned concepts is underreported in the literature. The following 4 key themes emerged: spiritual comfort; peaceful, calm death; spiritual transformation; and unfinished business The review established the importance of transcendence phenomena being accepted as spiritual experiences by health care professionals. Nevertheless, health care professionals were found to struggle with providing spiritual care to patients who have experienced them. Such phenomena are not uncommon and frequently result in peaceful death. Additionally, transcendence experiences of dying patients often provide comfort to the bereaved, assisting them in the grieving process. © The Author(s) 2015.

  18. OA20 The positioning of family, friends, community, and service providers in support networks for caring at end-of-life: a social network analysis.

    Science.gov (United States)

    Leonard, Rosemary; Horsfall, Debbie; Rosenberg, John; Noonan, Kerrie

    2015-04-01

    Although there is ample evidence of the risk to carers from the burden of caring, there is also evidence that a caring network can relieve the burden on the principal carer, strengthen community relationships, and increase 'Death Literacy' in the community. There is often an assumption that, in caring networks, family and service providers are central and friends and community are marginal. We examined whether this is the case in practice using SNA. To identify the relative positioning of family, friends, community, and service providers in caring networks. In interviews with carers (N = 23) and focus groups with caring networks (N = 13) participants were asked to list the people in the caring network and rate the strength of their relationships to them (0 no relationship to 3 strong relationship). SNA in UCInet was used to map the networks, examine density (number and strength of relationships) across time (when caring began to the present) and across relationship types (family, friends, community, and service providers) supplemented by qualitative data. The analysis revealed significant increases in the density of the networks over time. The density of relationships with friends was similar to that other family. Community and service providers had significantly lower density. Qualitative analysis revealed that often service providers were not seen as part of the networks. To avoid carer burnout, it is important not to make assumptions about where carers obtain support but work with each carer to mobilise any support that is available. © 2015, Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

  19. Can comprehensive specialised end-of-life care be provided at home? Lessons from a study of an innovative consultant-led community service in the UK.

    Science.gov (United States)

    Noble, B; King, N; Woolmore, A; Hughes, P; Winslow, M; Melvin, J; Brooks, J; Bravington, A; Ingleton, C; Bath, P A

    2015-03-01

    The Midhurst Macmillan Specialist Palliative Care Service (MMSPCS) is a UK, medical consultant-led, multidisciplinary team aiming to provide round-the-clock advice and care, including specialist interventions, in the home, community hospitals and care homes. Of 389 referrals in 2010/11, about 85% were for cancer, from a population of about 155 000. Using a mixed method approach, the evaluation comprised: a retrospective analysis of secondary-care use in the last year of life; financial evaluation of the MMSPCS using an Activity Based Costing approach; qualitative interviews with patients, carers, health and social care staff and MMSPCS staff and volunteers; a postal survey of General Practices; and a postal survey of bereaved caregivers using the MMSPCS. The mean cost is about 3000 GBP (3461 EUR) per patient with mean cost of interventions for cancer patients in the last year of life 1900 GBP (2192 EUR). Post-referral, overall costs to the system are similar for MMSPCS and hospice-led models; however, earlier referral avoided around 20% of total costs in the last year of life. Patients and carers reported positive experiences of support, linked to the flexible way the service worked. Seventy-one per cent of patients died at home. This model may have application elsewhere. © 2014 The Authors. European Journal of Cancer Care published by John Wiley & Sons Ltd.

  20. Reflections on Hope and Its Implications for End-of-Life Care.

    Science.gov (United States)

    Mattes, Malcolm D; Sloane, Michelle A

    2015-05-01

    Physicians caring for individuals with life-altering, incurable illnesses often have a desire to convey a sense of hope while also helping their patients prepare for the end of life to minimize unnecessary suffering and grief. Unfortunately, in the United States, most people receive more-aggressive treatments toward the end of life than studies would suggest that they desire. This reflects the challenging task of balancing optimism and realism, and how providing a false sense of hope for a cure for too long a time while avoiding advance care planning may contribute significantly to the problem. This article explores the interplay of hope and advance care planning, and suggests a need for excellent individualized communication in the setting of advanced cancer to improve end-of-life care. © 2015, Copyright the Authors Journal compilation © 2015, The American Geriatrics Society.

  1. Hospital end-of-life care in haematological malignancies.

    Science.gov (United States)

    Beaussant, Yvan; Daguindau, Etienne; Chauchet, Adrien; Rochigneux, Philippe; Tournigand, Christophe; Aubry, Régis; Morin, Lucas

    2018-02-06

    To investigate patterns of care during the last months of life of hospitalised patients who died from different haematological malignancies. Nationwide register-based study, including all hospitalised adults ≥20 years who died from haematological malignancies in France in 2010-2013. Outcomes included use of invasive cancer treatments and referral to palliative care. Percentages are adjusted for sex and age using direct standardisation. Of 46 629 inpatients who died with haematological malignancies, 24.5% received chemotherapy during the last month before death, 48.5% received blood transfusion, 12.3% were under invasive ventilation and 18.1% died in intensive care units. We found important variations between haematological malignancies. The use of chemotherapy during the last month of life varied from 8.6% among patients with chronic myeloid leukaemia up to 30.1% among those with non-Hodgkin's lymphoma (Pcare units. A high proportion of patients who died from haematological malignancies receive specific treatments near the end of life. There is a need for a better and earlier integration of the palliative care approach in the standard practice of haematology. However, substantial variation according to the type of haematological malignancy suggests that the patients should not be considered as one homogeneous group. Implementation of palliative care should account for differences across haematological malignancies. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

  2. [Conscience clause in end-of-life care.

    Science.gov (United States)

    De Panfilis, Ludovica; Cattaneo, Daniela; Cola, Luisanna; Gasparini, Maddalena; Porteri, Corinna; Tarquini, Daniela; Tiezzi, Alessandro; Veronese, Simone; Zullo, Silvia; Pucci, Eugenio

    2017-05-01

    The article proposes a critical reflection on issues that appeal to the conscience clause as part of end of life care can produce and what can guarantee freedom of conscience, self-determination of those involved and respect for the dignity of the sick person. After a philosophical and normative analysis, the article is organized on the basis of two important documents for discussion: a position paper of Società Italiana di Anestesia Analgesia Rianimazione e Terapia Intensiva (SIAARTI) signed by several scientific societies "Grandi insufficienze d'organo end stage: cure intensive o cure palliative?" and the Design of Law currently being debated "Norme in materia di consenso informato e di disposizioni anticipate di trattamento". In particular, the conscience clause has been discussed in the light of advance care planning (ACP), which represents the instrument to guarantee the shared planning of care and the shared-decision making. In this context, recourse to the clause of conscience brings out critical ethical and deontological issues that the article discusses, using the position paper SIAARTI and the text of law currently being debated, both built on the assumptions of a shared care relationship, where patient has a key-role in medical decisions.

  3. Palliative sedation in end-of-life care.

    Science.gov (United States)

    Maltoni, Marco; Scarpi, Emanuela; Nanni, Oriana

    2013-07-01

    The aim of this review was to present and comment on recent data published on palliative sedation in palliative and end-of-life care. Palliative sedation is a medical procedure used to deal with the refractory symptoms occurring in the advanced stages of cancer. It has clinical, nursing, relational and ethical implications, making it a highly sensitive issue. Over the last 12 months, a number of authors have published interesting new findings on different areas of palliative sedation, that is prevalence, indications, monitoring, duration and choice of drugs. In particular, a clear definition of palliative sedation and of its more pronounced form, deep continuous sedation (DCS), has emerged. It has been confirmed that, when performed in the correct way and with the right aims, palliative sedation does not have a detrimental impact on survival. Recent findings confirm that palliative sedation is an integral part of a medical palliative care approach and is needed in certain clinical situations. It is a legitimate clinical practice from any ethical point of view. While oncologists should have a basic knowledge of the procedure, its in depth study is a core competency for palliative care physicians.

  4. Culturally Diverse Communities and End-of-Life Care

    Science.gov (United States)

    ... Azen, S.P. (1995). Ethnicity and attitudes toward patient autonomy. JAMA, 274, 820-5 . Phipps, E., True, G., & ... briefly about end-of-life options and neglect culture or values (Tulsky, Fischer, Rose, & Arnold, 1998). Speaking ...

  5. Rural-Urban Differences in End-of-Life Nursing Home Care: Facility and Environmental Factors

    Science.gov (United States)

    Temkin-Greener, Helena; Zheng, Nan Tracy; Mukamel, Dana B.

    2012-01-01

    Purpose of the study: This study examines urban-rural differences in end-of-life (EOL) quality of care provided to nursing home (NH) residents. Data and Methods: We constructed 3 risk-adjusted EOL quality measures (QMs) for long-term decedent residents: in-hospital death, hospice referral before death, and presence of severe pain. We used…

  6. Health Care Decisions at the End of Life: Theological and Ethical Foundations for Decision Making.

    Science.gov (United States)

    Allegretti, Joseph G.

    This paper provides a framework for making sense of perplexing problems surrounding issues of death and dying by exploring the theological and ethical background to health care decision making at the end of life. The paper first examines several of the basic principles that theologians and secular ethicists employ when analyzing such questions.…

  7. End of life care in chronic obstructive pulmonary disease: in search of a good death

    Directory of Open Access Journals (Sweden)

    Anna Spathis

    2008-03-01

    Full Text Available Anna Spathis, Sara BoothPalliative Care Service, Cambridge University Hospitals NHS Foundation Trust, Cambridge, England, UKAbstract: Chronic obstructive pulmonary disease (COPD is an incurable, progressive illness that is the fourth commonest cause of death worldwide. Death tends to occur after a prolonged functional decline associated with uncontrolled symptoms, emotional distress and social isolation. There is increasing evidence that the end of life needs of those with advanced COPD are not being met by existing services. Many barriers hinder the provision of good end of life care in COPD, including the inherent difficulties in determining prognosis. This review provides an evidence-based approach to overcoming these barriers, summarising current evidence and highlighting areas for future research. Topics include end of life needs, symptom control, advance care planning, and service development to improve the quality of end of life care.Keywords: chronic obstructive pulmonary disease (MeSH, palliative care (MeSH, dyspnoea (MeSH, advance care planning (MeSH

  8. Learning About End-of-Life Care in Nursing-A Global Classroom Educational Innovation.

    Science.gov (United States)

    Bailey, Cara; Hewison, Alistair; Orr, Shelly; Baernholdt, Marianne

    2017-11-01

    Teaching nursing students how to provide patient-centered end-of-life care is important and challenging. As traditional face-to-face classroom teaching is increasingly supplanted by digital technology, this provides opportunities for developing new forms of end-of-life care education. The aim of this article is to examine how a global classroom was developed using online technology to enhance nursing students' learning of end-of-life care in England and the United States. The PDSA (Plan-Do-Study-Act) quality improvement approach was used to guide the design and delivery of this curriculum innovation. The global classroom enhanced the educational experience for students. Teaching needs to be inclusive, focused, and engaging; the virtual platform must be stable and support individual learning, and learning needs to be collaborative and authentic. These findings can be used to inform the integration of similar approaches to end-of-life care education in other health care professional preparation programs. [J Nurs Educ. 2017;56(11):688-691.]. Copyright 2017, SLACK Incorporated.

  9. End-of-life care in pediatric neuro-oncology.

    Science.gov (United States)

    Vallero, Stefano Gabriele; Lijoi, Stefano; Bertin, Daniele; Pittana, Laura Stefania; Bellini, Simona; Rossi, Francesca; Peretta, Paola; Basso, Maria Eleonora; Fagioli, Franca

    2014-11-01

    The management of children with cancer during the end-of-life (EOL) period is often difficult and requires skilled medical professionals. Patients with tumors of the central nervous system (CNS) with relapse or disease progression might have additional needs because of the presence of unique issues, such as neurological impairment and altered consciousness. Very few reports specifically concerning the EOL period in pediatric neuro-oncology are available. Among all patients followed at our center during the EOL, we retrospectively analyzed data from 39 children and adolescents with brain tumors, in order to point out on their peculiar needs. Patients were followed-up for a median time of 20.1 months. Eighty-two percent were receiving only palliative therapy before death. Almost half the patients (44%) died at home, while 56% died in a hospital. Palliative sedation with midazolam was performed in 58% of cases; morphine was administered in 51.6% of cases. No patient had uncontrolled pain. The EOL in children with advanced CNS cancer is a period of active medical care. Patients may develop complex neurological symptoms and often require long hospitalization. We organized a network-based collaboration among the reference pediatric oncology center, other pediatric hospitals and domiciliary care personnel, with the aim to ameliorate the quality of care during the EOL period. In our cohort, palliative sedation was widely used while no patients died with uncontrolled pain. A precise process of data collection and a better sharing of knowledge are necessary in order to improve the management of such patients. © 2014 Wiley Periodicals, Inc.

  10. Learning end-of-life care within a constructivist model: Undergraduate nursing students’ experiences

    Directory of Open Access Journals (Sweden)

    Anna E. van der Wath

    2015-11-01

    Full Text Available Background: Although nursing education aims to equip nursing students to provide care to dying patients and their families, nurses often feel ill-prepared to cope with the emotional labour involved in end-of-life care. Objectives: The aim of the study was to explore and describe nursing students’ experiences of end-of-life care through experiential learning within a constructivist educational model. Method: A qualitative, descriptive design was used. As part of introducing experiential learning, innovative educational practices were initiated during a second year level undergraduate nursing module on end-of-life care. Qualitative data on second-year nursing students’ experiences were collected through written reflections and analysed using open coding. Results: The themes that emerged revealed participants’ sensory and emotional experiences during the learning opportunities. Participants reflected on what they learnt and clarified their values related to death and dying. They indicated how they would apply the new meanings constructed in clinical practice. Conclusion: A constructivist educational model of experiential learning holds potential to enhance value clarification and nursing students’ sensory and emotional awareness of death and dying. Experiential learning is recommended to develop nursing students’ competency inproviding end-of-life care.

  11. [Ethical issues in the practice of advance directives, living wills, and self-determination in end of life care].

    Science.gov (United States)

    Fang, Hui-Feng; Jhing, Huei-Yu; Lin, Chia-Chin

    2009-02-01

    The Hospice-Palliative Care Act, enacted in Taiwan in 2000, was designed to respect the end of life medical wishes of patients with incurable illnesses, safeguard the rights of these patients, and provide clinical guidelines for healthcare workers responsible to provide end of life care. Self-determination is a core element of human dignity. Advance directive documents include a living will, and durable power of attorney for healthcare. This article reviews current issues and ethical dilemmas with regard to advance directives. Patients, family members, and clinicians may require better education on the Hospice-Palliative Care Act in order to respect more appropriately patient end of life medical care wishes.

  12. ORIGINAL ARTICLES Medical futility and end-of-life care

    African Journals Online (AJOL)

    2008-04-01

    Apr 1, 2008 ... It is based on the probability of a treatment not having the desired effect ... as empathetic participants in end-of-life decision-making is underscored. .... growing awareness of the limits of medical science's propensity to cure ...

  13. Evaluating a Clinical Decision Support Interface for End-of-Life Nurse Care.

    Science.gov (United States)

    Febretti, Alessandro; Stifter, Janet; Keenan, Gail M; Lopez, Karen D; Johnson, Andrew; Wilkie, Diana J

    2014-01-01

    Clinical Decision Support Systems (CDSS) are tools that assist healthcare personnel in the decision-making process for patient care. Although CDSSs have been successfully deployed in the clinical setting to assist physicians, few CDSS have been targeted at professional nurses, the largest group of health providers. We present our experience in designing and testing a CDSS interface embedded within a nurse care planning and documentation tool. We developed four prototypes based on different CDSS feature designs, and tested them in simulated end-of-life patient handoff sessions with a group of 40 nurse clinicians. We show how our prototypes directed nurses towards an optimal care decision that was rarely performed in unassisted practice. We also discuss the effect of CDSS layout and interface navigation in a nurse's acceptance of suggested actions. These findings provide insights into effective nursing CDSS design that are generalizable to care scenarios different than end-of-life.

  14. Effects of a Simulation Exercise on Nursing Students' End-of-Life Care Attitudes.

    Science.gov (United States)

    Dame, Linda; Hoebeke, Roberta

    2016-12-01

    Students consider end-of-life care content in their nursing curricula to be inadequate and deficient in promoting the development of the necessary attitudes to care for dying patients. Research identifies simulation as an effective teaching strategy to examine nursing students' attitudes toward end-of-life care. An end-of-life care simulation was developed, implemented, and evaluated. Attitudes toward caring for dying patients were measured pre- and postsimulation on a convenience sample of 57 sophomore nursing students using the Frommelt Attitudes Toward Care of the Dying Scale-Form B. Repeated measures of ANOVA on outcome variables evaluated student attitudes toward end-of-life care. Participation in an end-of-life care simulation resulted in more positive student attitudes toward caring for dying patients (p life care in nursing curricula and improve student attitudes toward caring for dying patients. [J Nurs Educ. 2016;55(12):701-705.]. Copyright 2016, SLACK Incorporated.

  15. The role of the bioethicist in family meetings about end of life care.

    Science.gov (United States)

    Watkins, Liza T; Sacajiu, Galit; Karasz, Alison

    2007-12-01

    There has been little study of the content of bioethicists' communication during family meeting consultations about end of life care. In the literature, two roles for bioethicists are usually described: the "consultant" role, in which bioethicists define and support ethical principles such as those enshrined in the "rational choice" model; and the "mediator" role, which focuses on the enhancement of communication in order to reduce conflict. In this study, we use observational data to explore how bioethicists support the practice of decision making during family meetings about end of life care. In a study conducted in the Bronx, New York, USA, researchers observed and recorded 24 decision-making meetings between hospital staff and family members of elderly patients identified as being in the last stages of illness, who were unable or unwilling to make the decision for themselves. Bioethics consultants were present during five of those meetings. Although bioethicists referred to the "rational choice" decision-making hierarchy, we did not see the systematic exploration described in the literature. Rather, our data show that bioethicists tended to employ elements of the rational model at particular turning points in the decision-making process in order to achieve pragmatic goals. As mediators, bioethicists worked to create consensus between family and staff and provided invaluable sympathy and comfort to distressed family members. We also found evidence of a context-dependent approach to mediation, with bioethicists' contributions generally supporting staff views about end of life care. Bioethicists' called to consult on family meetings about end of life care do not appear to adhere to a strict interpretation of the official guidelines. In order to negotiate the difficult terrain of end of life decision making, our data show that bioethicists often add a third role, "persuader", to official roles of "consultant" and "mediator".

  16. Hospice or community network? Choices in end-of-life care in Jamaica.

    Science.gov (United States)

    Mendoza, Roger Lee

    2017-09-01

    Now considered a subspecialty of medicine and nursing, palliative care is a critical aspect of healthcare at the end of life. National and international healthcare agencies typically attribute its slow or haphazard growth in developing countries to various resource constraints. However, this study provides evidence of the substantial and widening gap between policy advocacy and patient choices in end-of-life care. It does so by establishing the incentives and risks that underlie decision-making by patients and providers against the relative scarcity of palliative care and hospices in these countries. Jamaica offers an illustrative case. It shares the socioeconomic conditions and isolated provision of hospice and palliative care that remain prevalent in many developing countries. Empirical information was collected from all Jamaican hospices, along with agency and media reports, for comparative institutional analysis. Financial and infrastructural challenges hamper hospice expansion and integration into formal healthcare systems in developing countries. Yet, other equally vital considerations are too often neglected. These include the high transaction costs of decision-making, which account for limited hospice accessibility, affordability, and efficiency, particularly to underserved populations. Risk and payoff calculations by patients and their families as well as hospices and their providers lead to two strategic options in maximizing hospice value and/or minimizing transaction costs in end-of-life care. Policy formulation and advocacy for hospice and palliative care should match aggregate demand. The socio-cultural milieu of care is critical and should be equally considered. Otherwise, providing and expanding free or subsidized palliative care at the end-of-life stage can become cost-inefficient relative to robust family and grassroots community networks.

  17. Communication as care at end of life: an emerging issue from an exploratory action research study of renal end-of-life care for ethnic minorities in the UK.

    Science.gov (United States)

    Wilkinson, Emma; Randhawa, Gurch; Brown, Edwina A; Da Silva Gane, Maria; Stoves, John; Warwick, Graham; Akhtar, Tahira; Magee, Regina; Sharman, Sue; Farrington, Ken

    2014-09-01

    South Asian people have a higher risk of developing kidney disease, are disproportionately represented in the patient population requiring renal replacement therapy and wait longer to receive a kidney transplant, compared with white Europeans. As a result, there is a demand for end-of-life care, which meets the needs of this group of patients. Providing end-of-life care to patients from different cultures is a challenge for renal services as there can be barriers to communication in the form of language, delegated decision-making within families and reluctance to discuss death. To explore end-of-life care for South Asians with kidney disease, 16 interviews with patients and 14 focus groups with care providers were conducted at four research sites in the UK with large South Asian populations. Using an action research design the data were analysed thematically and fed back to inform the research in a cyclical manner. If patients are not fully aware of their condition or of what end-of-life care is, it is less likely that they will be able to be involved in decision-making about their care and this is compounded where there are communication barriers. Variations in care provider awareness and experience of providing end-of-life care to South Asian patients, in turn, contributes to lack of patient awareness of end-of-life care. Communication as care at the end of life should be explored further. Researching the South Asian patient experience of end of life highlights many relevant and generalisable issues. © 2014 European Dialysis and Transplant Nurses Association/European Renal Care Association.

  18. Exhaust All Measures: Ethical Issues in Pediatric End-of-Life Care.

    Science.gov (United States)

    Thieleman, Kara J; Wallace, Cara; Cimino, Andrea N; Rueda, Heidi A

    2016-01-01

    The death of a child may have a profound impact on parents, family members, and health care providers who provided care for the child. Unique challenges are faced by parents of seriously ill children as they must serve as the legal authority for health care decisions of children under age 18, although the child's wishes must also be considered. Social workers must balance core social work values, bioethical values, and psychosocial issues presented by such situations. While studies have been conducted with physicians and nurses regarding ethical issues in pediatric end-of-life care settings, little is known about how social workers experience these conflicts. This article utilizes two vignettes to illustrate potential ethical issues in this setting and applies the National Association of Social Workers Standards for Palliative and End of Life Care (NASW, 2004 ) to explore options for their resolution. These vignettes provide descriptions of possible reactions in this setting and can be used as a basis for further exploration of ethics in pediatric end-of-life care from a social work perspective.

  19. Emotional Numbness Modifies the Effect of End-of-Life Discussions on End-of-Life Care

    Science.gov (United States)

    Maciejewski, Paul K.; Prigerson, Holly G.

    2012-01-01

    Context Overall, end-of-life (EOL) discussions are unrelated to psychological distress and associated with lower rates of aggressive care near death. Nevertheless, patients who report they feel emotionally numb about their illness might encounter difficulties cognitively processing an EOL discussion. Objectives We hypothesized that emotional numbness would modify the influence of EOL discussions on the receipt of less aggressive EOL care. Methods Data were derived from structured interviews with 290 participants in the federally-funded Coping with Cancer Study, a multisite, prospective cohort study of advanced cancer patients followed through their death. Patients’ reports of EOL discussions with their physician and emotional numbness were assessed a median of 4.6 months before death. Information about aggressive EOL care (i.e., ventilation, resuscitation in the last week of life, death in the Intensive Care Unit) was obtained from postmortem caregiver interviews and medical charts. Main and interactive effects of EOL discussions and emotional numbness on aggressive EOL care, adjusting for potential confounds, were evaluated using multiple logistic regression. Results The likelihood of aggressive EOL care associated with having EOL discussions increased by a factor of nine (adjusted odds ratio=9.02, 95% confidence interval 1.37, 59.6, P=0.022) for every unit increase in a patient’s emotional numbness score. Conclusion Emotional numbness diminishes a patient’s capacity to benefit from EOL discussions. EOL decision making may be more effective if clinical communications with emotionally numb patients are avoided. PMID:22926093

  20. Communication and Decision-Making About End-of-Life Care in the Intensive Care Unit.

    Science.gov (United States)

    Brooks, Laura Anne; Manias, Elizabeth; Nicholson, Patricia

    2017-07-01

    Clinicians in the intensive care unit commonly face decisions involving withholding or withdrawing life-sustaining therapy, which present many clinical and ethical challenges. Communication and shared decision-making are key aspects relating to the transition from active treatment to end-of-life care. To explore the experiences and perspectives of nurses and physicians when initiating end-of-life care in the intensive care unit. The study was conducted in a 24-bed intensive care unit in Melbourne, Australia. An interpretative, qualitative inquiry was used, with focus groups as the data collection method. Intensive care nurses and physicians were recruited to participate in a discipline-specific focus group. Focus group discussions were audio-recorded, transcribed, and subjected to thematic data analysis. Five focus groups were conducted; 17 nurses and 11 physicians participated. The key aspects discussed included communication and shared decision-making. Themes related to communication included the timing of end-of-life care discussions and conducting difficult conversations. Implementation and multidisciplinary acceptance of end-of-life care plans and collaborative decisions involving patients and families were themes related to shared decision-making. Effective communication and decision-making practices regarding initiating end-of-life care in the intensive care unit are important. Multidisciplinary implementation and acceptance of end-of-life care plans in the intensive care unit need improvement. Clear organizational processes that support the introduction of nurse and physician end-of-life care leaders are essential to optimize outcomes for patients, family members, and clinicians. ©2017 American Association of Critical-Care Nurses.

  1. End-of-life conversations and care: an asset-based model for community engagement.

    Science.gov (United States)

    Matthiesen, Mary; Froggatt, Katherine; Owen, Elaine; Ashton, John R

    2014-09-01

    Public awareness work regarding palliative and end-of-life care is increasingly promoted within national strategies for palliative care. Different approaches to undertaking this work are being used, often based upon broader educational principles, but little is known about how to undertake such initiatives in a way that equally engages both the health and social care sector and the local communities. An asset-based community engagement approach has been developed that facilitates community-led awareness initiatives concerning end-of-life conversations and care by identifying and connecting existing skills and expertise. (1) To describe the processes and features of an asset-based community engagement approach that facilitates community-led awareness initiatives with a focus on end-of-life conversations and care; and (2) to identify key community-identified priorities for sustainable community engagement processes. An asset-based model of community engagement specific to end-of-life issues using a four-step process is described (getting started, coming together, action planning and implementation). The use of this approach, in two regional community engagement programmes, based across rural and urban communities in the northwest of England, is described. The assets identified in the facilitated community engagement process encompassed people's talents and skills, community groups and networks, government and non-government agencies, physical and economic assets and community values and stories. Five priority areas were addressed to ensure active community engagement work: information, outreach, education, leadership and sustainability. A facilitated, asset-based approach of community engagement for end-of-life conversations and care can catalyse community-led awareness initiatives. This occurs through the involvement of community and local health and social care organisations as co-creators of this change across multiple sectors in a sustainable way. This approach

  2. End-of-Life Care Education for Psychiatric Residents: Attitudes, Preparedness, and Conceptualizations of Dignity

    Science.gov (United States)

    Tait, Glendon R.; Hodges, Brian D.

    2009-01-01

    Objective: The authors examined psychiatric residents' attitudes, perceived preparedness, experiences, and needs in end-of-life care education. They also examined how residents conceptualized good end-of-life care and dignity. Methods: The authors conducted an electronic survey of 116 psychiatric residents at the University of Toronto. The survey…

  3. End-of-life care and mental illness: a model for community psychiatry and beyond.

    Science.gov (United States)

    Candilis, Philip J; Foti, Mary Ellen G; Holzer, Jacob C

    2004-02-01

    End-of-life care is often influenced by the stereotyping of patients by age, diagnosis, or cultural identity. Two common stereotypes arise from the presumed incompetence of many patients to contribute to end-of-life decisions, and the fear that the discussions themselves will be de-stabilizing. We present a model for end-of-life discussions that combines competence assessment with healthcare preferences in a psychiatric population that faces identical stereotypes. The model, which draws on clinical research in competence and suicide risk assessment, has important implications for all patients in the community who are marginalized or stereotyped during discussions of end-of-life treatment.

  4. Caring to learn, learning to care: Inmate Hospice Volunteers and the Delivery of Prison End-of-Life Care

    Science.gov (United States)

    Cloyes, Kristin G.; Rosenkranz, Susan J.; Supiano, Katherine P.; Berry, Patricia H.; Routt, Meghan; Llanque, Sarah M.; Shannon-Dorcy, Kathleen

    2017-01-01

    The increasing numbers of aging and chronically ill prisoners incarcerated in Western nations is well documented, as is the growing need for prison-based palliative and end-of-life care. Less often discussed is specifically how end-of-life care can and should be provided, by whom, and with what resources. One strategy incorporates prisoner volunteers into end-of-life services within a peer care program. This article reports on one such program based on focused ethnographic study including in-depth interviews with inmate hospice volunteers, nursing staff, and corrections officers working in the hospice program. We describe how inmate volunteers learn hospice care through formal education and training, supervised practice, guidance from more experienced inmates, and support from correctional staff. We discuss how emergent values of mentorship and stewardship are seen by volunteers and staff as integral to prison hospice sustainability and discuss implications of this volunteer-centric model for response-ability for the end-of-life care of prisoners. PMID:28100141

  5. The broad spectrum of unbearable suffering in end of life cancer studied in dutch primary care

    NARCIS (Netherlands)

    Ruijs, C.D.M.; Kerkhof, A.J.F.M.; van der Wal, G.; Onwuteaka-Philipsen, B.D.

    2012-01-01

    Background: Unbearable suffering most frequently is reported in end-of-life cancer patients in primary care. However, research seldom addresses unbearable suffering. The aim of this study was to comprehensively investigate the various aspects of unbearable suffering in end-of-life cancer patients

  6. Involving healthcare professionals and family carers in setting research priorities for end-of-life care.

    Science.gov (United States)

    Diffin, Janet; Spence, Michael; Spencer, Rebecca; Mellor, Peter; Grande, Gunn

    2017-02-02

    It is important to ensure regional variances are considered when setting future end-of-life research priorities, given the differing demographics and service provision. This project sought to identify end-of-life research priorities within Greater Manchester (United Kingdom). Following an initial scoping exercise, six topics within the 10 national priorities outlined by The Palliative and end-of-life care Priority Setting Partnership were selected for exploration. A workshop involving 32 healthcare professionals and a consultation process with 26 family carers was conducted. Healthcare professionals and carers selected and discussed the topics important to them. The topics selected most frequently by both healthcare professionals and carers were 'Access to 24 hour care', 'Planning end-of-life care in advance' and 'Staff and carer education'. Healthcare professionals also developed research questions for their topics of choice which were refined to incorporate carers' views. These questions are an important starting point for future end-of-life research within Greater Manchester.

  7. Working with Russian-Jewish immigrants in end-of-life care settings.

    Science.gov (United States)

    Newhouse, Leonid

    2013-01-01

    This article examines Russian-Jewish immigrant clients' attitudes toward death and dying in the context of today's health care system. Aspects of individuals' collective past--such as the traumatic history of their country of origin; cultural prohibitions against discussing pain, suffering, and death; and the lack of familiarity with palliative care that are likely to affect their decisions about end-of-life care--are discussed. Case vignettes are provided, with a discussion on how best to engage these clients in therapeutic work.

  8. End-of-life care in the United States: policy issues and model programs of integrated care

    Directory of Open Access Journals (Sweden)

    Joshua M. Wiener

    2003-05-01

    Full Text Available Background: End-of-life care financing and delivery in the United States is fragmented and uncoordinated, with little integration of acute and long-term care services. Objective: To assess policy issues involving end-of-life care, especially involving the hospice benefit, and to analyse model programs of integrated care for people who are dying. Methods: The study conducted structured interviews with stakeholders and experts in end-of-life care and with administrators of model programs in the United States, which were nominated by the experts. Results: The two major public insurance programs—Medicare and Medicaid—finance the vast majority of end-of-life care. Both programs offer a hospice benefit, which has several shortcomings, including requiring physicians to make a prognosis of a six month life expectancy and insisting that patients give up curative treatment—two steps which are difficult for doctors and patients to make—and payment levels that may be too low. In addition, quality of care initiatives for nursing homes and hospice sometimes conflict. Four innovative health systems have overcome these barriers to provide palliative services to beneficiaries in their last year of life. Three of these health systems are managed care plans which receive capitated payments. These providers integrate health, long-term and palliative care using an interdisciplinary team approach to management of services. The fourth provider is a hospice that provides palliative services to beneficiaries of all ages, including those who have not elected hospice care. Conclusions: End-of-life care is deficient in the United States. Public payers could use their market power to improve care through a number of strategies.

  9. Pharmacy Students' Attitudes Toward Death and End-of-life Care

    Science.gov (United States)

    Broeseker, Amy E.

    2010-01-01

    Objectives To assess pharmacy students' attitudes toward death and end-of-life care. Methods Third-year pharmacy students enrolled in the Ethics in Christianity and Health Care course were administered a survey instrument prior to introduction of the topic of end-of-life care. Students' attitudes toward different professions' roles in end-of-life care and their comfort in discussing end-of-life issues were assessed. The survey instrument was readministered to the same students at the end of their fourth year. Results On most survey items, female students responded more favorably toward death and end-of-life care than male students. One exception was the perceived emotional ability to be in the room of a dying patient or loved one. Post-experiential survey responses were generally more favorable toward death and end-of-life care than were pre-discussion responses. Conclusions In general, when surveyed concerning death and end-of-life care, female students responded more favorably than male students, and responses at the end of the fourth year were more favorable than at the beginning of the course. PMID:21045946

  10. Team-Based Models for End-of-Life Care: An Evidence-Based Analysis

    Science.gov (United States)

    2014-01-01

    the patient. A “comprehensive” model is one that provides continuity of service across inpatient and outpatient settings, e.g., in hospital and then at home. All teams consisted of a nurse and physician at minimum, at least one of whom had a specialty in end-of-life health care. More than 50% of the teams offered services that included symptom management, psychosocial care, development of patient care plans, end-of-life care planning, and coordination of care. We found moderate-quality evidence that the use of a comprehensive direct contact model initiated up to 9 months before death improved informal caregiver satisfaction and the odds of having a home death, and decreased the odds of dying in a nursing home. We found moderate-quality evidence that the use of a comprehensive, direct, and early (up to 24 months before death) contact model improved patient quality of life, symptom management, and patient satisfaction. We did not find that using a comprehensive team-based model had an impact on hospital admissions or length of stay. We found low-quality evidence that the use of a home team-based model increased the odds of having a home death. Limitations Heterogeneity in data reporting across studies limited the ability to complete a meta-analysis on many of the outcome measures. Missing data was not managed well within the studies. Conclusions Moderate-quality evidence shows that a comprehensive, direct-contact, team-based model of care provides the following benefits for end-of-life patients with an estimated survival of up to 9 months: it improves caregiver satisfaction and increases the odds of dying at home while decreasing the odds of dying in a nursing home. Moderate-quality evidence also shows that improvement in patient quality of life, symptom management, and patient satisfaction occur when end-of-life care via this model is provided early (up to 24 months before death). However, using this model to deliver end-of-life care does not impact hospital

  11. After you: conversations between patients and healthcare professionals in planning for end of life care

    Directory of Open Access Journals (Sweden)

    Almack Kathryn

    2012-09-01

    Full Text Available Abstract Background This study explores with patients, carers and health care professionals if, when and how Advance Care Planning conversations about patients’ preferences for place of care (and death were facilitated and documented. Methods The study adopted an exploratory case study design using qualitative interviews, across five services delivering palliative care to cancer and non-cancer patients within an urban and rural English region. The study recruited 18 cases made up of patients (N = 18; 10 men; 8 women; median age 75; nominated relatives (N = 11; 7 women; 4 men; median age 65 and healthcare professionals (N = 15 caring for the patient. Data collection included: 18 initial interviews (nine separate interviews with patients and 9 joint interviews with patients and relatives and follow up interviews in 6 cases (involving a total of 5 patients and 5 relatives within one year of the first interview. Five group interviews were conducted with 15 healthcare professionals; 8 of whom also participated in follow up interviews to review their involvement with patients in our study. Results Patients demonstrated varying degrees of reticence, evasion or reluctance to initiate any conversations about end of life care preferences. Most assumed that staff would initiate such conversations, while staff were often hesitant to do so. Staff-identified barriers included the perceived risks of taking away hope and issues of timing. Staff were often guided by cues from the patient or by intuition about when to initiate these discussions. Conclusions This study provides insights into the complexities surrounding the initiation of Advance Care Planning involving conversations about end of life care preferences with patients who are identified as having palliative care needs, in particular in relation to the risks inherent in the process of having conversations where mortality must be acknowledged. Future research is needed to examine how to

  12. Paediatric end-of-life care needs in Switzerland: current practices, and perspectives from parents and professionals. A study protocol.

    Science.gov (United States)

    Bergstraesser, Eva; Zimmermann, Karin; Eskola, Katri; Luck, Patricia; Ramelet, Anne-Sylvie; Cignacco, Eva

    2015-08-01

    To present a protocol for a multi-phase study about the current practice of end-of-life care in paediatric settings in Switzerland. In Switzerland, paediatric palliative care is usually provided by teams, who may not necessarily have specific training. There is a lack of systematic data about specific aspects of care at the end of a child's life, such as symptom management, involvement of parents in decision-making and family-centred care and experiences and needs of parents, and perspectives of healthcare professionals. This retrospective nationwide multicentre study, Paediatric End-of-LIfe CAre Needs in Switzerland (PELICAN), combines quantitative and qualitative methods of enquiry. The PELICAN study consists of three observational parts, PELICAN I describes practices of end-of-life care (defined as the last 4 weeks of life) in the hospital and home care setting of children (0-18 years) who died in the years 2011-2012 due to a cardiac, neurological or oncological disease, or who died in the neonatal period. PELICAN II assesses the experiences and needs of parents during the end-of-life phase of their child. PELICAN III focuses on healthcare professionals and explores their perspectives concerning the provision of end-of-life care. This first study across Switzerland will provide comprehensive insight into the current end-of-life care in children with distinct diagnoses and the perspectives of affected parents and health professionals. The results may facilitate the development and implementation of programmes for end-of-life care in children across Switzerland, building on real experiences and needs. ClinicalTrials.gov Identifier: NCT01983852. © 2015 John Wiley & Sons Ltd.

  13. Embracing a broad spirituality in end of life discussions and advance care planning.

    Science.gov (United States)

    Churchill, Larry R

    2015-04-01

    Advance care planning for end of life typically focuses on the mechanics of completing living wills and durable power of attorney documents. Even when spiritual aspects of end of life care are discussed, the dominant assumptions are those of traditional religious systems. A broad view of spirituality is needed, one that may involve traditional religious beliefs but also includes personal understandings of what is holy or sacred. Embracing this broad practice of spirituality will help both familial and professional caregivers honor an essential aspect of end of life discussions and promote greater discernment of the deep meaning in advance care documents.

  14. Health Care Professionals' Understandings of Cross-Cultural Interaction in End-of-Life Care: A Focus Group Study.

    Science.gov (United States)

    Milberg, Anna; Torres, Sandra; Ågård, Pernilla

    2016-01-01

    The academic debate on cross-cultural interaction within the context of end-of-life care takes for granted that this interaction is challenging. However, few empirical studies have actually focused on what health care professionals think about this interaction. This study aimed to explore health care professionals' understandings of cross-cultural interaction during end-of-life care. Sixty end-of-life care professionals were recruited from eleven care units in Sweden to take part in focus group interviews. These interviews were analyzed using qualitative content analysis. The health care professionals interviewed talked about cross-cultural interaction in end-of-life care as interaction that brings about uncertainty, stress and frustration even though they had limited experience of this type of interaction. The focus group discussions brought attention to four specific challenges that they expected to meet when they care for patients with migrant backgrounds since they took for granted that they would have an ethno-cultural background that is different to their own. These challenges had to do with communication barriers, 'unusual' emotional and pain expressions, the expectation that these patients' families would be 'different' and the anticipation that these patients and their families lack knowledge. At the core of the challenges in question is the idea that cross-cultural interaction means meeting "the unknown". In addition, the end-of-life care professionals interviewed talked about patients whose backgrounds they did not share in homogenizing terms. It is against this backdrop that they worried about their ability to provide end-of-life care that is individualized enough to meet the needs of these patients. The study suggests that end-of-life care professionals who regard cross-cultural interaction in this manner could face actual challenges when caring for patients whose backgrounds they regard as "the unknown" since they anticipate a variety of challenges

  15. Health Care Professionals’ Understandings of Cross-Cultural Interaction in End-of-Life Care: A Focus Group Study

    Science.gov (United States)

    Torres, Sandra; Ågård, Pernilla

    2016-01-01

    Objective The academic debate on cross-cultural interaction within the context of end-of-life care takes for granted that this interaction is challenging. However, few empirical studies have actually focused on what health care professionals think about this interaction. This study aimed to explore health care professionals’ understandings of cross-cultural interaction during end-of-life care. Methods Sixty end-of-life care professionals were recruited from eleven care units in Sweden to take part in focus group interviews. These interviews were analyzed using qualitative content analysis. Results The health care professionals interviewed talked about cross-cultural interaction in end-of-life care as interaction that brings about uncertainty, stress and frustration even though they had limited experience of this type of interaction. The focus group discussions brought attention to four specific challenges that they expected to meet when they care for patients with migrant backgrounds since they took for granted that they would have an ethno-cultural background that is different to their own. These challenges had to do with communication barriers, ‘unusual’ emotional and pain expressions, the expectation that these patients’ families would be ‘different’ and the anticipation that these patients and their families lack knowledge. At the core of the challenges in question is the idea that cross-cultural interaction means meeting “the unknown”. In addition, the end-of-life care professionals interviewed talked about patients whose backgrounds they did not share in homogenizing terms. It is against this backdrop that they worried about their ability to provide end-of-life care that is individualized enough to meet the needs of these patients. Conclusions The study suggests that end-of-life care professionals who regard cross-cultural interaction in this manner could face actual challenges when caring for patients whose backgrounds they regard as

  16. Health Care Professionals' Understandings of Cross-Cultural Interaction in End-of-Life Care: A Focus Group Study.

    Directory of Open Access Journals (Sweden)

    Anna Milberg

    Full Text Available The academic debate on cross-cultural interaction within the context of end-of-life care takes for granted that this interaction is challenging. However, few empirical studies have actually focused on what health care professionals think about this interaction. This study aimed to explore health care professionals' understandings of cross-cultural interaction during end-of-life care.Sixty end-of-life care professionals were recruited from eleven care units in Sweden to take part in focus group interviews. These interviews were analyzed using qualitative content analysis.The health care professionals interviewed talked about cross-cultural interaction in end-of-life care as interaction that brings about uncertainty, stress and frustration even though they had limited experience of this type of interaction. The focus group discussions brought attention to four specific challenges that they expected to meet when they care for patients with migrant backgrounds since they took for granted that they would have an ethno-cultural background that is different to their own. These challenges had to do with communication barriers, 'unusual' emotional and pain expressions, the expectation that these patients' families would be 'different' and the anticipation that these patients and their families lack knowledge. At the core of the challenges in question is the idea that cross-cultural interaction means meeting "the unknown". In addition, the end-of-life care professionals interviewed talked about patients whose backgrounds they did not share in homogenizing terms. It is against this backdrop that they worried about their ability to provide end-of-life care that is individualized enough to meet the needs of these patients.The study suggests that end-of-life care professionals who regard cross-cultural interaction in this manner could face actual challenges when caring for patients whose backgrounds they regard as "the unknown" since they anticipate a variety

  17. Promoting excellence in end-of-life care: a report on innovative models of palliative care.

    Science.gov (United States)

    Byock, Ira; Twohig, Jeanne Sheils; Merriman, Melanie; Collins, Karyn

    2006-02-01

    Promoting Excellence in End-of Life Care, a national program of The Robert Wood Johnson Foundation, funded 22 demonstration projects representing a wide range of health care settings and patient populations to develop innovative models for delivering palliative care that addressed documented deficiencies in the care of patients and families facing the final stage of life. To determine the practicality (feasibility of development and operation as well as acceptance by stakeholders) of new models of care and to determine the impact of the models on access to, quality of and financing for palliative care. The program cannot report scientifically rigorous outcomes, but the grant-funded projects used a variety of methods and measures to assess acceptance of new models and their impact from the perspectives of various stakeholders, including patients and their families, clinicians, administrators and payers. While it is not possible to aggregate data across projects, the data reported to the Promoting Excellence national program office were used to describe program impact with respect to the practicality of palliative care service integration into existing clinical care settings (feasibility and acceptance by stakeholders), the availability and use of palliative care services (access), quality of care (conformance to patient expectations and accepted clinical standards) and costs of care. The 22 projects provided services in urban as well as rural settings, in integrated health systems, hospitals, outpatient clinics, cancer centers, nursing homes, renal dialysis clinics, inner city public health and safety net systems and prisons. Populations served included prison inmates, military veterans, renal dialysis patients, Native Americans, Native Alaskans, and African American patients, inner-city medically underserved patients, pediatric patients, and persons with serious mental illness patients. Hosting or adopting institutions sustained or expanded twenty of the 22 models

  18. End-of-life decisions: an important theme in the care for people with intellectual disabilities.

    NARCIS (Netherlands)

    Wagemans, A.; Schrojenstein Lantman, H.M.J. van; Tuffrey-Wijne, I.; Widdershoven, G.; Curfs, L.M.G.

    2010-01-01

    BACKGROUND: While end-of-life decisions in the general population have received attention in several countries, not much is known about this in people with intellectual disabilities (IDs). Therefore, the prevalence and nature of end-of-life decisions were investigated in a Dutch centre providing

  19. Graduate Students' Reflections on Elder and End-of-Life Care for Prisoners.

    Science.gov (United States)

    Baumann, Steven L; Todaro-Franceschi, Vidette

    2017-07-01

    The focus of this report was graduate nursing students' reflections on elder and end-of-life care for prisoners. The personal reflections of 21 graduate nursing students who attended a presentation by Susan J. Loeb on October 26, 2016 were included in this report. The title of the presentation was "Enhancing End-of-Life Care for Prisoners Through Partnering With the Prison Community." The student essays were synthesized to construct a summary essay, from which four themes were identified: aging in prison, dying in prison, ethical and professional issues in the elder and end-of-life care of prisoners, and ethical and professional issues in research involving elderly and end-of-life care of prisoners. These findings were interpreted from a global perspective in light of two different nursing perspectives: the humanbecoming tradition and the science of unitary human beings.

  20. Allowing Family to be Family: End-of-Life Care in Veterans Affairs Medical Foster Homes.

    Science.gov (United States)

    Manheim, Chelsea E; Haverhals, Leah M; Jones, Jacqueline; Levy, Cari R

    2016-01-01

    The Medical Foster Home program is a unique long-term care program coordinated by the Veterans Health Administration. The program pairs Veterans with private, 24-hour a day community-based caregivers who often care for Veterans until the end of life. This qualitative study explored the experiences of care coordination for Medical Foster Home Veterans at the end of life with eight Veterans' family members, five Medical Foster Home caregivers, and seven Veterans Health Administration Home-Based Primary Care team members. A case study, qualitative content analysis identified these themes addressing care coordination and impact of the Medical Foster Home model on those involved: (a) Medical Foster Home program supports Veterans' families; (b) Medical Foster Home program supports the caregiver as family; (c) Veterans' needs are met socially and culturally at the end of life; and (d) the changing needs of Veterans, families, and caregivers at Veterans' end of life are addressed. Insights into how to best support Medical Foster Home caregivers caring for Veterans at the end of life were gained including the need for more and better respite options and how caregivers are compensated in the month of the Veteran's death, as well as suggestions to navigate end-of-life care coordination with multiple stakeholders involved.

  1. Quality of Living and Dying: Pediatric Palliative Care and End-of-Life Decisions in the Netherlands.

    Science.gov (United States)

    Brouwer, Marije; Maeckelberghe, Els; DE Weerd, Willemien; Verhagen, Eduard

    2018-07-01

    In 2002, The Netherlands continued its leadership in developing rules and jurisdiction regarding euthanasia and end-of-life decisions by implementing the Euthanasia Act, which allows euthanasia for patients 12 years of age and older. Subsequently, in 2005, the regulation on active ending of life for newborns was issued. However, more and more physicians and parents have stated that the age gap between these two regulations-children between 1 and 12 years old-is undesirable. These children should have the same right to end their suffering as adults and newborn infants. An extended debate on pediatric euthanasia ensued, and currently the debate is ongoing as to whether legislation should be altered in order to allow pediatric euthanasia. An emerging major question regards the active ending of life in the context of palliative care: How does a request for active ending of life relate to the care that is given to children in the palliative phase? Until now, the distinction between palliative care and end-of-life decisions continues to remain unclear, making any discussion about their mutual in- and exclusiveness hazardous at best. In this report, therefore, we aim to provide insight into the relationship between pediatric palliative care and end-of-life decisions, as understood in the Netherlands. We do so by first providing an overview of the (legal) rules and regulations regarding euthanasia and active ending of life, followed by an analysis of the relationship between these two, using the Dutch National Guidelines for Palliative Care for Children. The results of this analysis revealed two major and related features of palliative care and end-of-life decisions for children: (1) palliative care and end-of-life decisions are part of the same process, one that focuses both on quality of living and quality of dying, and (2) although physicians are seen as ultimately responsible for making end-of-life decisions, the involvement of parents and children in this decision is

  2. End-of-life care in the general wards of a Singaporean hospital: an Asian perspective.

    Science.gov (United States)

    Phua, Jason; Kee, Adrian Chin-Leong; Tan, Adeline; Mukhopadhyay, Amartya; See, Kay Choong; Aung, Ngu Wah; Seah, Angeline S T; Lim, Tow Keang

    2011-12-01

    Despite international differences in cultural perspectives on end-of-life issues, little is known of the care for the dying in the general wards of acute hospitals in Asia. We performed a retrospective medical chart review of all 683 adult patients who died without intensive care unit (ICU) admission in our Singaporean hospital in 2007. We first evaluated the prevalence of do-not-resuscitate (DNR) orders and orders for or against life-sustaining therapies; second, if such orders were discussed with the patients and/or family members; and third, the actual treatments provided before death. There were DNR orders for 66.2% of patients and neither commitment for DNR nor cardiopulmonary resuscitation (CPR) for 28.1%. Orders to limit life-sustaining therapies, including ICU admission, intubation, and vasopressors/inotropes were infrequent. Only 6.2% of the alert and conversant patients with DNR orders were involved in discussions on these orders. In contrast, such discussions with their family members occurred 82.9% of the time. Interventions in the last 24 hours of life included CPR (9.4%), intubation (6.4%), vasopressors/inotropes (14.8%), tube feeding (24.7%), and antibiotics (44.9%). Analgesia was provided in 29.1% of patients. There was a lack of commitment by doctors on orders for DNR/CPR and to limit life-sustaining therapies, infrequent discussions with patients on end-of-life decisions, and excessive burdensome interventions with inadequate palliative care for the dying. These findings may reflect certain Asian cultural biases. More work is required to improve our quality of end-of-life care.

  3. Identifying care actions to conserve dignity in end-of-life care.

    Science.gov (United States)

    Brown, Hilary; Johnston, Bridget; Ostlund, Ulrika

    2011-05-01

    Community nurses have a central role in the provision of palliative and end-of-life care; helping people to die with dignity is an important component of this care. To conserve dignity, care should comprise a broad range of actions addressing the distress that might impact on the patient's sense of dignity. These care actions need to be defined. This study aims to suggest care actions that conserve dignity at the end of life based on evidence from local experience and community nursing practice. Data were collected by focus group interviews and analysed by framework analysis using the Chochinov model of dignity as a predefined framework. Suggestions on care actions were given in relation to all themes. As part of a multi-phase project developing and testing a dignity care pathway, this study might help community nurses to conserve dying patients' dignity.

  4. National quality indicators and policies from 15 countries leading in adult end-of-life care: a systematic environmental scan.

    Science.gov (United States)

    Virdun, Claudia; Luckett, Tim; Lorenz, Karl A; Phillips, Jane

    2018-06-01

    The importance of measuring the quality of end-of-life care provision is undisputed, but determining how best to achieve this is yet to be confirmed. This study sought to identify and describe national end-of-life care quality indicators and supporting policies used by countries leading in their end-of-life care provision. A systematic environmental scan that included a web search to identify relevant national policies and indicators; hand searching for additional materials; information from experts listed for the top 10 (n=15) countries ranked in the 'quality of care' category of the 2015 Quality of Death Index study; and snowballing from Index experts. Ten countries (66%) have national policy support for end-of-life care measurement, five have national indicator sets, with two indicator sets suitable for all service providers. No countries mandate indicator use, and there is limited evidence of consumer engagement in development of indicators. Two thirds of the 128 identified indicators are outcomes measures (62%), and 38% are process measures. Most indicators pertain to symptom management (38%), social care (32%) or care delivery (27%). Measurement of end-of-life care quality varies globally and rarely covers all care domains or service providers. There is a need to reduce duplication of indicator development, involve consumers, consider all care providers and ensure measurable and relevant indicators to improve end-of-life care experiences for patients and families. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

  5. Detained and Dying: Ethical Issues Surrounding End-of-Life Care in Prison.

    Science.gov (United States)

    Stensland, Meredith; Sanders, Sara

    2016-01-01

    Prisons are increasingly being called upon to provide end-of-life (EOL) care within the restrictive correctional environment. Several relatively recent phenomena have brought medical ethics to the forefront of prison EOL care-including aging behind bars, a paradigm shift in prison culture, the increasing rate of in-prison deaths, and the corresponding prison hospice movement. This article examines prominent ethical issues that emerge for prison personnel who are tasked with providing care to terminally ill offenders by presenting three offender composite characters that exemplify dying offenders and emergent ethical issues surrounding their care. Identification and critical analysis of these ethical issues demonstrate the need for strong commitment to ethical practice and highlights specific issues for prisons to examine in their own EOL care practice.

  6. Dire deadlines: coping with dysfunctional family dynamics in an end-of-life care setting.

    Science.gov (United States)

    Holst, Lone; Lundgren, Maren; Olsen, Lutte; Ishøy, Torben

    2009-01-01

    Working in a hospice and being able to focus on individualized, specialized end-of-life care is a privilege for the hospice staff member. However, it also presents the hospice staff with unique challenges. This descriptive study is based upon two cases from an end-of-life care setting in Denmark, where dysfunctional family dynamics presented added challenges to the staff members in their efforts to provide optimal palliative care. The hospice triad--the patient, the staff member and the family member--forms the basis for communication and intervention in a hospice. Higher expectations and demands of younger, more well-informed patients and family members challenge hospice staff in terms of information and communication when planning for care. The inherent risk factors of working with patients in the terminal phase of life become a focal point in the prevention of the development of compassion fatigue among staff members. A series of coping strategies to more optimally manage dysfunctional families in a setting where time is of the essence are then presented in an effort to empower the hospice team, to prevent splitting among staff members, and to improve quality of care.

  7. Current End-of-Life Care Needs and Care Practices in Acute Care Hospitals

    Directory of Open Access Journals (Sweden)

    Amy J. Thurston

    2011-01-01

    Full Text Available A descriptive-comparative study was undertaken to examine current end-of-life care needs and practices in hospital. A chart review for all 1,018 persons who died from August 1, 2008 through July 31, 2009 in two full-service Canadian hospitals was conducted. Most decedents were elderly (73.8% and urbanite (79.5%, and cancer was the most common diagnosis (36.2%. Only 13.8% had CPR performed at some point during this hospitalization and 8.8% had CPR immediately preceding death, with 87.5% having a DNR order and 30.8% providing an advance directive. Most (97.3% had one or more life-sustaining technologies in use at the time of death. These figures indicate, when compared to those in a similar mid-1990s Canadian study, that impending death is more often openly recognized and addressed. Technologies continue to be routinely but controversially used. The increased rate of end-stage CPR from 2.9% to 8.8% could reflect a 1994+ shift of expected deaths out of hospital.

  8. End of life care preferences among people of advanced age: LiLACS NZ.

    Science.gov (United States)

    Gott, Merryn; Frey, Rosemary; Wiles, Janine; Rolleston, Anna; Teh, Ruth; Moeke-Maxwell, Tess; Kerse, Ngaire

    2017-12-19

    Understanding end of life preferences amongst the oldest old is crucial to informing appropriate palliative and end of life care internationally. However, little has been reported in the academic literature about the end of life preferences of people in advanced age, particularly the preferences of indigenous older people, including New Zealand Māori. Data on end of life preferences were gathered from 147 Māori (aged >80 years) and 291 non- Māori aged (>85 years), during three waves of Te Puawaitangi O Nga Tapuwae Kia Ora Tonu, Life and Living in Advanced Age (LiLACs NZ). An interviewer-led questionnaire using standardised tools and including Māori specific subsections was used. The top priority for both Māori and non-Māori participants at end of life was 'not being a burden to my family'. Interestingly, a home death was not a high priority for either group. End of life preferences differed by gender, however these differences were culturally contingent. More female Māori participants wanted spiritual practices at end of life than male Māori participants. More male non-Māori participants wanted to be resuscitated than female non- Māori participants. That a home death was not in the top three end of life priorities for our participants is not consistent with palliative care policy in most developed countries where place of death, and particularly home death, is a central concern. Conversely our participants' top concern - namely not being a burden - has received little research or policy attention. Our results also indicate a need to pay attention to diversity in end of life preferences amongst people of advanced age, as well as the socio-cultural context within which preferences are formulated.

  9. End-of-Life Care for People Who Have Cancer

    Science.gov (United States)

    ... they will be taken care of no matter what happens. Caregivers need to be prepared to answer tough questions. ... are the signs that death is approaching, and what can the caregiver do to make the person comfortable during this ...

  10. End-of-life care in general practice: A cross-sectional, retrospective survey of 'cancer', 'organ failure' and 'old-age/dementia' patients

    NARCIS (Netherlands)

    Evans, N.C.; Pasman, H.R.W.; Donker, G.A.; Deliens, L.; Block, L.; Onwuteaka-Philipsen, B.D.

    2014-01-01

    Background: End-of-life care is often provided in primary care settings. Aim: To describe and compare general-practitioner end-of-life care for Dutch patients who died from 'cancer', 'organ failure' and 'old-age or dementia'. Design: A cross-sectional, retrospective survey was conducted within a

  11. United States Acculturation and Cancer Patients’ End-of-Life Care

    Science.gov (United States)

    Wright, Alexi A.; Stieglitz, Heather; Kupersztoch, Yankel M.; Paulk, M. Elizabeth; Kim, Yookyung; Katz, Ingrid T.; Munoz, Francisco; Jimenez, Rachel B.; Mutchler, Jan; Rivera, Lorna; Back, Anthony L.; Prigerson, Holly G.

    2013-01-01

    Background Culture shapes how people understand illness and death, but few studies examine whether acculturation influences patients’ end-of-life treatment preferences and medical care. Methods and Findings In this multi-site, prospective, longitudinal cohort study of terminally-ill cancer patients and their caregivers (n = 171 dyads), trained interviewers administered the United States Acculturation Scale (USAS). The USAS is a 19-item scale developed to assess the degree of “Americanization” in first generation or non-US born caregivers of terminally-ill cancer patients. We evaluated the internal consistency, concurrent, criterion, and content validity of the USAS. We also examined whether caregivers’ USAS scores predicted patients’ communication, treatment preferences, and end-of-life medical care in multivariable models that corrected for significant confounding influences (e.g. education, country of origin, English proficiency). The USAS measure was internally consistent (Cronbach α = 0.98); and significantly associated with US birthplace (r = 0.66, Punit (AOR = 1.36, 95% CI:1.05–1.76). Scores indicating greater acculturation were also associated with increased odds of patient participation in clinical trials (AOR = 2.20, 95% CI:1.28–3.78), compared with lower USAS scores, and greater odds of patients receiving chemotherapy (AOR = 1.59, 95% CI:1.20–2.12). Conclusion The USAS is a reliable and valid measure of “Americanization” associated with advanced cancer patients’ end-of-life preferences and care. USAS scores indicating greater caregiver acculturation were associated with increased odds of patient participation in cancer treatment (chemotherapy, clinical trials) compared with lower scores. Future studies should examine the effects of acculturation on end-of-life care to identify patient and provider factors that explain these effects and targets for future interventions to improve care (e.g., by designing more

  12. 76 FR 35221 - Proposed Collection; Comment Request; NINR End-of-Life and Palliative Care Science Needs...

    Science.gov (United States)

    2011-06-16

    ... Request; NINR End-of-Life and Palliative Care Science Needs Assessment: Funding Source Questionnaire... Collection: Title: NINR End-of-Life and Palliative Care Science Needs Assessment: Funding Source... Collection: The NINR End-of-Life Science Palliative Care (EOL PC) Needs Assessment: Funding Source...

  13. Ethics and end of life care: the Liverpool Care Pathway and the Neuberger Review.

    Science.gov (United States)

    Wrigley, Anthony

    2015-08-01

    The Liverpool Care Pathway for the Dying has recently been the topic of substantial media interest and also been subject to the independent Neuberger Review. This review has identified clear failings in some areas of care and recommended the Liverpool Care Pathway be phased out. I argue that while the evidence gathered of poor incidences of practice by the Review is of genuine concern for end of life care, the inferences drawn from this evidence are inconsistent with the causes for the concern. Seeking to end an approach that is widely seen as best practice and which can genuinely deliver high quality care because of negative impressions that have been formed from failing to implement it properly is not a good basis for radically overhauling our approach to end of life care. I conclude that improvements in training, communication and ethical decision-making, without the added demand to end the Liverpool Care Pathway, would have resulted in a genuine advance in end of life care. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

  14. Spirituality in end-of-life care: attending the person on their journey.

    LENUS (Irish Health Repository)

    Hayden, Deborah

    2011-11-01

    Spirituality is a fundamental element to the human experience of health and healing, illness and dying. Spiritual care is an essential component of palliative and end-of-life care provision and is the responsibility of all staff and carers involved in the care of patients and families. As end-of-life care is a significant element of community nursing, this article explores the relevancy of spirituality to end-of-life practice, the challenge of defining spirituality and the attributes and skills required for the practice of spiritual care. The aim of is to encourage self reflection and open dialogue about the subject, thus enhancing community nurses\\' understanding of spiritual care practice. By reflecting and generating talk about the practice of spiritual care, it may become more normalized, recognized, and practically meaningful, thereby retaining its significance in holistic nursing.

  15. Nurses' care practices at the end of life in intensive care units in Bahrain.

    Science.gov (United States)

    O'Neill, Catherine S; Yaqoob, Maryam; Faraj, Sumaya; O'Neill, Carla L

    2017-12-01

    The process of dying in intensive care units is complex as the technological environment shapes clinical decisions. Decisions at the end of life require the involvement of patient, families and healthcare professionals. The degree of involvement can vary depending on the professional and social culture of the unit. Nurses have an important role to play in caring for dying patients and their families; however, their knowledge is not always sought. This study explored nurses' care practices at the end of life, with the objective of describing and identifying end of life care practices that nurses contribute to, with an emphasis on culture, religious experiences and professional identity. Research Design and context: Grounded theory was used. In all, 10 nurses from intensive care unit in two large hospitals in Bahrain were participated. Ethical Considerations: Approval to carry out the research was given by the Research Ethics Committee of the host institution, and the two hospitals. A core category, Death Avoidance Talk, was emerged. This was supported by two major categories: (1) order-oriented care and (2) signalling death and care shifting. Death talk was avoided by the nurses, doctors and family members. When a decision was made by the medical team that a patient was not to be resuscitated, the nurses took this as a sign that death was imminent. This led to a process of signalling death to family and of shifting care to family members. Despite the avoidance of death talk and nurses' lack of professional autonomy, they created awareness that death was imminent to family members and ensured that end of life care was given in a culturally sensitive manner and aligned to Islamic values.

  16. End-of-life ethical dilemmas in intensive care unit

    Directory of Open Access Journals (Sweden)

    Štefan Grosek

    2013-10-01

    Full Text Available Sustaining vital functions in critically ill in the ICU frequently allows prolongation of patient’s life even in circumstances where the treatment has lost its medical rationale and/or there is no hope for the patient’s condition to improve. Decision-making about termination of such treatment – usually referred to as futile, useless or inappropriate –, frequently presents a difficult ethical dilemma not only for the intensivists and other health-care workers but also for the patients and their relatives. The principles of biomedical ethics present a useful framework for decision-making in ethical dilemmas but cannot offer sufficiently explicit guidelines. Besides, the concepts of futility or futile treatment in the ICU are also not unequivocally defined. Thus, the decision regarding continuing or stopping treatment should be based on careful evaluation of the balance between its expected efficiency and benefits on the one hand and the burden imposed upon the patient on the other. If the burden clearly exceeds the expected benefits, the ethically sound decision is to terminate such treatment.

  17. Personal determinants of nurses' burnout in end of life care.

    Science.gov (United States)

    Gama, Georgeana; Barbosa, Filipe; Vieira, Margarida

    2014-10-01

    Our aim is to identify socio-demographic, professional exposure to dying, training degree and personal factors relevant to burnout dimensions in nurses coping with death issues. A sample of 360 nurses (response rate 70.6%) from internal medicine, oncology, haematology and palliative care departments of five health institutions answered to a socio-demographic and professional questionnaire, Maslach Burnout Inventory, Death Attitude Profile Scale, Purpose in Life Test and Adult Attachment Scale. No significant differences were found between medical departments in burnout scores except when comparing those with palliative care department which showed significant lesser levels of emotional exhaustion (t = 2.71; p exhaustion and depersonalization are negative, sequentially determined respectively by purpose in life, dependent attachment, fear of death attitude and by purpose in life, dependent attachment, years of professional experience and personal accomplishment by positive purpose on life and secure attachment. We conclude for the protective value of factors such as meaning and purpose in life, secure attachment and attitude towards death, through the various burnout dimensions that shows the need to develop under and postgraduate training strategies in these specific areas. Crown Copyright © 2014. Published by Elsevier Ltd. All rights reserved.

  18. Inter-organisation communication for end of life care.

    Science.gov (United States)

    Thomas, Paul

    2009-01-01

    Background Poor communication between in-hours and out-of-hours (OoH) general practitioners (GPs) causes unwanted admissions to hospital of patients who want to die at home Setting A GP OoH service in West London (London Central and West Unscheduled Care Service) used by 159 general practices from four primary care trusts Question What helps to avoid hospital admission of patients who want to die at home when a crisis occurs in the OoH period? Methods Whole system participatory action research, with four stages: 1. engage stakeholders; 2. understand the initial situation; 3. re-design the system; 4. action for change Results The following help to avoid undesirable hospital admission of a dying person who has a crisis in the OoH period: 1. a register of vulnerable adults; 2. records at home; 3. key worker(s); 4. home interventions; 5. day-time practitioner communication; 6. a development and governance group; 7. speedy discharge from hospital; 8. decision support for OoH GPs. Discussion This project revealed a useful set of policies to help avoid unnecessary OoH admission to hospital, especially improved communication between day-time GPs and OoH GPs. The approach combined whole system participatory action research with systems modelling and this helped the issues to be revealed quickly and cheaply. Furthermore, including leaders from partner organisations at each stage of the inquiry has encouraged shared purpose and produced champions to move forward the project recommendations. Some changes have already happened.

  19. Caring for people at the end of life: Iranian oncology nurses′ experiences

    Directory of Open Access Journals (Sweden)

    Sedigheh Iranmanesh

    2009-01-01

    Conclusion: The study suggests that the nurses′ success in caring for people at the end of life is reliant on their interpersonal caring relationship. Facilitating such relationship requires the establishment of palliative care unit, incorporation of palliative care into undergraduate nursing studies, and cultural preparation through public education.

  20. Nursing Home Physicians' Assessments of Barriers and Strategies for End-of-Life Care in Norway and The Netherlands

    NARCIS (Netherlands)

    Fosse, Anette; Zuidema, Sytse; Boersma, Froukje; Malterud, Kirsti; Schaufel, Margrethe Aase; Ruths, Sabine

    2017-01-01

    OBJECTIVES: Working conditions in nursing homes (NHs) may hamper teamwork in providing quality end-of-life (EOL) care, especially the participation of NH physicians. Dutch NH physicians are specialists or trainees in elderly care medicine with NHs as the main workplace, whereas in Norway, family

  1. Buddhist ethics and end-of-life care decisions.

    Science.gov (United States)

    McCormick, Andrew J

    2013-01-01

    Buddhism has grown in the United States in the past 50 years. Immigrants come following long traditions. American converts are more eclectic. The first Buddhist precept prohibiting harm to living things, the virtue of compassion, and the goal of a peaceful death provide guidance for ethical decision making regarding organ donation, withholding and withdrawing life-sustaining treatment, voluntary cessation of eating, physician aid in dying, and euthanasia. Concepts and views from three Buddhist traditions and views of master practitioners are presented. Case examples illustrate some of the differences within Buddhism. Suggestions for social workers are provided.

  2. Using sociodrama and psychodrama to teach communication in end-of-life care.

    Science.gov (United States)

    Baile, Walter F; De Panfilis, Ludovica; Tanzi, Silvia; Moroni, Matteo; Walters, Rebecca; Biasco, Guido

    2012-09-01

    End-of-life discussions can be stressful and can elicit strong emotions in the provider as well as the patient and family. In palliative care, understanding and effectively addressing emotions is a key skill that can enhance professional competency and patient/family satisfaction with care. We illustrate how in coursework for a Master's degree in palliative medicine we used dramatic "action methods" derived from sociodrama and psychodrama in the portrayal of two challenging cases to train providers in the emotional aspects of caring for patients with advanced cancer. We describe the specific techniques of constructing and enacting case scenarios using warm-ups, role-creation, doubling and role-reversal. In particular, we illustrate how these techniques and others were used to reveal and address the "hidden" emotions, attitudes, and values that were central to the communication dilemma. Finally, we present an evaluation completed by the 26 participants who attended the course.

  3. 76 FR 59145 - Submission for OMB Review; Comment Request; NINR End-of-Life and Palliative Care Science Needs...

    Science.gov (United States)

    2011-09-23

    ...; Comment Request; NINR End-of-Life and Palliative Care Science Needs Assessment: Funding Source (Survey of... End-of-Life and Palliative Care Science Needs Assessment: Funding Source (Survey of Authors). Type of Information Collection Request: NEW. Need and Use of Information Collection: The NINR End-of-Life Science...

  4. End of life care and decision making: Opinions and experiences of the general public, bereaved relatives, and professionals

    NARCIS (Netherlands)

    N.J.H. Raijmakers (Natasja)

    2013-01-01

    textabstractEnd-of-life care aims to improve quality of life of patients and their relatives facing problems associated with life-threatening illness in the last days of life. End-of-life decision-making is an important aspect of end-of-life care that can have a significant impact on the process of

  5. Evaluation of the Dignity Care Pathway for community nurses caring for people at the end of life.

    Science.gov (United States)

    Johnston, Bridget; Östlund, Ulrika; Brown, Hilary

    2012-10-01

    People nearing the end of life fear loss of dignity, and a central tenet of palliative care is to help people die with dignity. The Dignity Care Pathway (DCP) is an intervention based on the Chochinov theoretical model of dignity care. It has four sections: a manual, a Patient Dignity Inventory, reflective questions, and care actions. The feasibility and acceptability of the DCP were evaluated using a qualitative design with a purposive sample of community nurses. Data was collected from April to October 2010 using in-depth interviews, reflective diaries, and case studies and then analysed using framework analysis. The DCP was acceptable to the community nurses, helped them identify when patients were at the end of life, identified patients' key concerns, and aided nurses in providing holistic end-of-life care. It requires the nurse to have excellent communication skills. Some of the nurses found it hard to initiate a conversation on dignity-conserving care. The DCP helps nurses to deliver individualised care and psychological care, which has previously been identified as a difficult area for community nurses. All of the nurses wished to continue to use the DCP and would recommend it to others.

  6. Advance Directives for End-of-Life Care and the Role of Health Education Specialists: Applying the Theory of Reasoned Action

    Science.gov (United States)

    Tremethick, Mary Jane; Johnson, Maureen K.; Carter, Mary R.

    2011-01-01

    Quality end-of-life care is subjective and based on individual values and beliefs. An advance directive provides a legal means of communicating these values and beliefs, as well as preferences in regards to end-of-life care when an individual is no longer able to make his or her desires known. In many nations, advance directives are underused…

  7. End-of-Life care in a community garden: Findings from a Participatory Action Research project in regional Australia.

    Science.gov (United States)

    Marsh, Pauline; Gartrell, Gabrielle; Egg, Gwen; Nolan, Andrew; Cross, Merylin

    2017-05-01

    This article presents findings from research that explored how a community garden might function as a place of end-of-life and bereavement support. Adopting Participatory Action Research (PAR) methods, and informed by Third Place theory and notions of therapeutic landscape, creative consultations were held in the Garden and people's homes. The findings provide insights into the nature of informal care as it is played out in the liminal garden space, between home and institution. The results illuminate the therapeutic landscape of community gardens, and contribute new understandings to the fields of PAR, health geography and end-of-life care. Copyright © 2017 Elsevier Ltd. All rights reserved.

  8. Enhancing student communication during end-of-life care: A pilot study.

    Science.gov (United States)

    Bloomfield, Jacqueline G; O'Neill, Bernadette; Gillett, Karen

    2015-12-01

    Quality end-of-life care requires effective communication skills, yet medical and nursing students report limited opportunities to develop these skills, and that they lack confidence and the related competence. Our purpose was to design, implement, and evaluate an educational intervention employing simulated patient actors to enhance students' abilities to communicate with dying patients and their families. A study employing a mixed-methods design was conducted with prequalification nursing and medical students recruited from a London university. The first phase involved focus groups with students, which informed the development of an educational intervention involving simulated patient actors. Questionnaires measuring students' perceptions of confidence and competence levels when communicating with dying patients and their families were administered before and after the intervention. The themes from focus groups related to responding to grief and anger, difficulties dealing with emotions, knowing the "right thing" to say, and a lack of experience. A significant increase (p students to communicate with dying patients and their families. The opportunity to develop communication skills was valued. Integration of educational interventions employing simulated patient actors into nursing and medical curricula may assist in improving the care provided to patients at the end of life.

  9. Diversity in Defining End of Life Care: An Obstacle or the Way Forward?

    NARCIS (Netherlands)

    Gysels, M.; Evans, N.C.; Menaca, A.; Higginson, I.J.; Harding, R.; Pool, R.

    2013-01-01

    Aim:The terms used to describe care at the end of life (EoL), and its definitions, have evolved over time and reflect the changes in meaning the concept has undergone as the field develops. We explore the remit of EoL care as defined by experts in EoL care, from across Europe and beyond, to

  10. Diversity in defining end of life care: an obstacle or the way forward?

    NARCIS (Netherlands)

    Gysels, M.; Evans, N.; Meñaca, A.; Higginson, I.J.; Harding, R; Pool, R.

    2013-01-01

    Aim: The terms used to describe care at the end of life (EoL), and its definitions, have evolved over time and reflect the changes in meaning the concept has undergone as the field develops. We explore the remit of EoL care as defined by experts in EoL care, from across Europe and beyond, to

  11. Residential aged care residents and components of end of life care in an Australian hospital.

    Science.gov (United States)

    Leong, Laurence Jee Peng; Crawford, Gregory Brian

    2018-06-09

    With ageing of Australians, the numbers of residential aged care (RAC) residents is rising. This places a spotlight on decisions about appropriate care for this population, including hospitalisation and end-of-life (EOL) care. The aim was to study a sample of RAC residents who attended and died in hospital, to quantify measurable components of EOL care so as to describe the extent of palliative care required. A retrospective case-note review of hospital records was conducted in Adelaide, Australia. Participants were 109 RAC residents who attended from July 2013 to June 2014 and died in hospital. Measurements were advance care planning, health care input from the RAC facilities to hospital and components of EOL care. Residents with and without advanced dementia were compared. Advance care directives (ACDs) were present from 11 to 50%, and advance care plans (ACPs) at 60%. There were more ACPs, resuscitation orders (for/against) and do-not-hospitalise orders in residents with advanced dementia than those without. General practitioner (GP) and extended care paramedic (ECP) input on decisions for hospital transfer were 30% and 1 %. Mean hospital stay to death was 5.2 days. For residents admitted under non-palliative care teams, specialist palliative care (SPC) was needed for phone advice in 5%, consultation in 45%, transfer to palliative care unit in 37%, and takeover by SPC team in 19%. Mean number of documented goals-of-care discussions with family/caregiver was 1.7. In the last 3 days of life, the mean daily number of doses of EOL medications was 4.2. Continuous subcutaneous infusion was commenced in 35%. Staff in RAC need to be adequately resourced to make complex decisions about whether to transfer to hospital. RAC nurses are mainly making these decisions as GP and ECP input were suboptimal. Ways to support nurses and optimise decision-making are needed. Advance care planning can be improved, especially documentation of EOL wishes and hospitalisation orders. By

  12. End-of-Life Care in Nunavik, Quebec: Inuit Experiences, Current Realities, and Ways Forward.

    Science.gov (United States)

    Hordyk, Shawn Renee; Macdonald, Mary Ellen; Brassard, Paul

    2017-06-01

    Increasing longevity for Inuit living in Nunavik, northern Quebec, has resulted in heightened rates of cancers and chronic diseases necessitating complex treatments. Consequently, end-of-life (EOL) care, once the domain of Inuit families and communities, has come to include professionalized healthcare providers with varying degrees of awareness of factors to consider in providing care to Inuit populations. To better understand the factors shaping EOL care in Nunavik to support the development of a sustainable model of care. Using focused ethnography, we conducted participant observations and informal and semistructured interviews with 103 participants (community members, healthcare practitioners, and administrators) across Nunavik and in Montreal, the affiliated tertiary care center. Data domains included the following: care trajectories; patient and family experiences receiving and providing EOL care; local and urban resources and challenges; and ways forward. Sociocultural, historical, and geographic factors shape EOL care in Nunavik, presenting a complex set of challenges for Inuit patients, families, and healthcare providers. A sustainable model of EOL care requires building on shared initiatives, capitalizing on the existing strengths in communities, and attending to the multiple bereavement needs in the region. Building a sustainable model of EOL care requires respectful collaboration among governing structures, healthcare institutions, and community members. It must centrally value local knowledge and initiatives. To ensure Inuit families and patients are supported throughout the dying process, future initiatives must centrally include local stakeholders in both the design and evaluation of any changes to the current healthcare system.

  13. Physician Communication in Pediatric End-of-Life Care: A Simulation Study.

    Science.gov (United States)

    Bateman, Lori Brand; Tofil, Nancy M; White, Marjorie Lee; Dure, Leon S; Clair, Jeffrey Michael; Needham, Belinda L

    2016-12-01

    The objective of this exploratory study is to describe communication between physicians and the actor parent of a standardized 8-year-old patient in respiratory distress who was nearing the end of life. Thirteen pediatric emergency medicine and pediatric critical care fellows and attendings participated in a high-fidelity simulation to assess physician communication with an actor-parent. Fifteen percent of the participants decided not to initiate life-sustaining technology (intubation), and 23% of participants offered alternatives to life-sustaining care, such as comfort measures. Although 92% of the participants initiated an end-of-life conversation, the quality of that discussion varied widely. Findings indicate that effective physician-parent communication may not consistently occur in cases involving the treatment of pediatric patients at the end of life in emergency and critical care units. The findings in this study, particularly that physician-parent end-of-life communication is often unclear and that alternatives to life-sustaining technology are often not offered, suggest that physicians need more training in both communication and end-of-life care. © The Author(s) 2015.

  14. Exploring end-of-life care for South Asian kidney patients: interviewer reflections.

    Science.gov (United States)

    Wilkinson, Emma; Waqar, Muhammad; Gill, Balbir; Hoque, Pina; Jetha, Champa; Bola, Kulwinder Kaur; Mahmood, Riffat; Mahmood, Sultan; Saujani, Rita; Randhawa, Gurch

    2017-03-16

    The reduction of inequalities in access to quality care has been a central tenet of UK health policy. Ethnic minorities may experience additional inequalities because of language and other cultural barriers. This article reports interviewer reflections of conducting interviews with South Asian kidney patients about their experiences of end-of-life care. It explores themes which emerged from the analysis of a focus group held with eight bilingual research interviewers. The relevance of these themes to understanding inequalities and access to end-of-life care is discussed; together with the potential for the research process to contribute to service improvement.

  15. End-of-life experiences and expectations of Africans in Australia: cultural implications for palliative and hospice care.

    Science.gov (United States)

    Hiruy, Kiros; Mwanri, Lillian

    2014-03-01

    The ageing and frail migrants who are at the end of life are an increasing share of migrants living in Australia. However, within such populations, information about end-of-life experiences is limited, particularly among Africans. This article provides some insights into the sociocultural end-of-life experiences of Africans in Australia and their interaction with the health services in general and end-of-life care in particular. It provides points for discussion to consider an ethical framework that include Afro-communitarian ethical principles to enhance the capacity of current health services to provide culturally appropriate and ethical care. This article contributes to our knowledge regarding the provision of culturally appropriate and ethical care to African patients and their families by enabling the learning of health service providers to improve the competence of palliative care systems and professionals in Australia. Additionally, it initiates the discussion to highlight the importance of paying sufficient attention to a diverse range of factors including the migration history when providing palliative and hospice care for patients from African migrant populations.

  16. Time, timing, talking and training: findings from an exploratory action research study to improve quality of end of life care for minority ethnic kidney patients.

    Science.gov (United States)

    Wilkinson, Emma; Randhawa, Gurch; Brown, Edwina; Da Silva Gane, Maria; Stoves, John; Warwick, Graham; Mir, Tahira; Magee, Regina; Sharman, Sue; Farrington, Ken

    2017-06-01

    Background. With an ageing and increasingly diverse population at risk from rising levels of obesity, diabetes and cardiovascular disease, including kidney complications, there is a need to provide quality care at all stages in the care pathway including at the end of life and to all patients. Aim . This study purposively explored South Asian patients' experiences of kidney end of life care to understand how services can be delivered in a way that meets diverse patient needs. Methods. Within an action research design 14 focus groups (45 care providers) of kidney care providers discussed the recruitment and analysis of individual interviews with 16 South Asian kidney patients (eight men, eight women). Emergent themes from the focus groups were analysed thematically. The research took place at four UK centres providing kidney care to diverse populations: West London, Luton, Leicester and Bradford. Results. Key themes related to time and the timing of discussions about end of life care and the factors that place limitations on patients and providers in talking about end of life care. Lack of time and confidence of nurses in areas of kidney care, individual attitudes and workforce composition influence whether and how patients have access to end of life care through kidney services. Conclusion. Training, team work and time to discuss overarching issues (including timing and communication about end of life) with colleagues could support service providers to facilitate access and delivery of end of life care to this group of patients.

  17. Patient-reported assessment of quality care at end of life: development and validation of Quality Care Questionnaire-End of Life (QCQ-EOL).

    Science.gov (United States)

    Yun, Young Ho; Kim, Soo-Hyun; Lee, Kyoung-Min; Park, Sang Min; Lee, Chang Geol; Choi, Youn Seon; Lee, Won Sup; Kim, Si-Young; Heo, Dae Seog

    2006-09-01

    Our goal was to validate an instrument with which terminally ill patients could evaluate the quality of care they receive at the end of life (EOL). Questionnaire development followed a four-phase process: item generation and reduction, construction, pilot testing, and field-testing. Using relevance and priority criteria and pilot testing, we developed a 16-item questionnaire. Factor analyses of data from 235 patients resulted in the Quality Care Questionnaire-End of Life (QCQ-EOL) covering dignity-conserving care, care by health care professionals, individualised care, and family relationships. All subscales and total scores showed high internal consistency (Cronbach alpha range, 0.73-0.89). The ability of total score and selective subscale scores clearly differentiated patients on the basis of clinical situation, sense of dignity, and general rating of care quality. Correlations of scores between patients and caregivers were substantial. The QCQ-EOL can be adopted to assess the quality of care received by terminally ill patients.

  18. End-of-life care beliefs among Hindu physicians in the United States.

    Science.gov (United States)

    Ramalingam, Vijaya Sivalingam; Saeed, Fahad; Sinnakirouchenan, Ramapriya; Holley, Jean L; Srinivasan, Sinnakirouchenan

    2015-02-01

    Several studies from the United States and Europe showed that physicians' religiosity is associated with their approach to end-of-life care beliefs. No such studies have focused exclusively on Hindu physicians practicing in the United States. A 34-item questionnaire was sent to 293 Hindu physicians in the United States. Most participants believed that their religious beliefs do not influence their practice of medicine and do not interfere with withdrawal of life support. The US practice of discussing end-of-life issues with the patient, rather than primarily with the family, seems to have been adopted by Hindu physicians practicing in the United States. It is likely that the ethical, cultural, and patient-centered environment of US health care has influenced the practice of end-of-life care by Hindu physicians in this country. © The Author(s) 2013.

  19. The Evolution of End-of-Life Care: Ethical Implications for Case Management.

    Science.gov (United States)

    Fink-Samnick, Ellen

    2016-01-01

    This article: : Applicable to all health care sectors where case management is practiced. Few topics are more intimate and multifaceted for case managers than engaging with today's culturally diverse patient populations around end-of-life processes. The already prominent focus of this issue has been further elevated by a series of events to receive public attention. These include the Institute of Medicine's 2014 report-Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life, rising numbers of patients around the globe requesting to end life on their own terms, and corresponding death with dignity initiatives and legislation.Another vital factor in the end-of-life equation involves how the latest generation of shared decision making influences the management of treatment dialogues among practitioners, patients, as well as insurance companies. Case managers are at the intersection of these complex interactions, working to achieve ethical, as well as legal accountability to the patient, employer, and profession while balancing personal perspectives. Professionals strive to effectively intervene with patients and their support systems facing end-of-life care decisions. It is essential case managers actively consider the intricacies of ethical practice and current contexts including death with dignity legislation, shared decision making, and shifts in regulations and reimbursement for end-of-life care.Case management's ethical envelope will continue to be pushed. To that end amid shifting societal constructs, professionals must have mastery of applicable codes, standards, principles, and rules essential for adherence to ethical practice.

  20. End of Life Issues

    Science.gov (United States)

    Planning for the end of life can be difficult. But by deciding what end-of-life care best suits your needs when you are healthy, you can ... right choices when the time comes. End-of-life planning usually includes making choices about the following: ...

  1. Raising end of life care issues for patients with learning disabilities.

    Science.gov (United States)

    Sander, Ruth

    2012-11-30

    This qualitative study explored the views of three learning disability nurses, and three district nurses, caring for people with learning disabilities at the end of their lives. Although they saw some good practice, the nurses identified several difficulties associated with end of life care.

  2. Peaceful Death: Recommended Competencies and Curricular Guidelines for End-of-Life Nursing Care.

    Science.gov (United States)

    American Association of Colleges of Nursing, Washington, DC.

    A group of health care ethicists and palliative care experts convened by the American Association of Colleges of Nursing developed a set of competencies that should be achieved through nursing curricula. The purpose of the 15 competency statements is to assist nurse educators in incorporating end-of-life content into nursing curricula. Every…

  3. Culture and end of life care: a scoping exercise in seven European countries

    NARCIS (Netherlands)

    Gysels, M.; Evans, N.; Meñaca, A.; Andrew, E.; Toscani, F.; Finetti, S.; Pasman, H.R.; Higginson, I.; Harding, R.; Pool, R.

    2012-01-01

    Aim: Culture is becoming increasingly important in relation to end of life (EoL) care in a context of globalization, migration and European integration. We explore and compare socio-cultural issues that shape EoL care in seven European countries and critically appraise the existing research evidence

  4. Culture and End of Life Care: A Scoping Exercise in Seven European Countries

    NARCIS (Netherlands)

    Gysels, M.; Evans, N.C.; Menaca, A.; Andrew, E.; Toscani, F.; Finetti, S.; Pasman, H.R.W.; Higginson, I.; Harding, R.; Pool, R.

    2012-01-01

    Aim: Culture is becoming increasingly important in relation to end of life (EoL) care in a context of globalization, migration and European integration. We explore and compare socio-cultural issues that shape EoL care in seven European countries and critically appraise the existing research evidence

  5. Clinical review: Ethics and end-of-life care for critically ill patients in China

    OpenAIRE

    Li, Li Bin

    2013-01-01

    Critical care medicine in China has made great advances in recent decades. This has led to an unavoidable issue: end-of-life ethics. With advances in medical technology and therapeutics allowing the seemingly limitless maintenance of life, the exact time of death of an individual patient is often determined by the decision to limit life support. How to care for patients at the end of life is not only a medical problem but also a social, ethical, and legal issue. A lot of factors, besides cult...

  6. Impact of Oncologists’ Attitudes Toward End-of-Life Care on Patients’ Access to Palliative Care

    Science.gov (United States)

    Cerana, Maria Agustina; Park, Minjeong; Hess, Kenneth; Bruera, Eduardo

    2016-01-01

    Background. It is unclear how oncologists’ attitudes toward end-of-life (EOL) care affect the delivery of care. The present study examined the association between oncologists’ EOL care attitudes and (a) timely specialist palliative care referral, (b) provision of supportive care, and (c) EOL cancer treatment decisions. Methods. We randomly surveyed 240 oncology specialists at our tertiary care cancer center to assess their attitudes toward EOL care using a score derived from the Jackson et al. qualitative conceptual framework (0 = uncomfortable and 8 = highly comfortable with EOL care). We determined the association between this score and clinicians’ report of specialist palliative care referral, provision of supportive care, and EOL cancer treatment decisions. Results. Of the 182 respondents (response rate of 76%), the median composite EOL care score was 6 (interquartile range, 5–7). A higher EOL score was significantly associated with solid tumor oncology (median 7 vs. 6 for hematologic oncology; p = .003), a greater willingness to refer patients with newly diagnosed cancer to specialist palliative care (median, 7 vs. 6; p = .01), greater comfort with symptom management (median, 6 vs. 5; p = .01), and provision of counseling (median, 7 vs. 4; p EOL care was associated with higher rates of specialist palliative care referral and self-reported primary palliative care delivery. More support and education are needed for oncologists who are less comfortable with EOL care. Implications for Practice: In the present survey of oncology specialists, most reported that they were comfortable with end-of-life (EOL) care, which was in turn, associated with greater provision of primary palliative care and higher rates of referral to specialist palliative care. The results of the present study highlight the need for more support and education for oncologists less comfortable with EOL care because their patients might receive lower levels of both primary and secondary

  7. A practice model for rural district nursing success in end-of-life advocacy care.

    Science.gov (United States)

    Reed, Frances M; Fitzgerald, Les; Bish, Melanie R

    2017-08-24

    The development of a practice model for rural district nursing successful end-of-life advocacy care. Resources to help people live well in the end stages of life in rural areas can be limited and difficult to access. District nurse advocacy may promote end-of-life choice for people living at home in rural Australia. The lack of evidence available internationally to inform practice in this context was addressed by exploratory study. A pragmatic mixed method study approved by the University Faculty Ethics Committee and conducted from March 2014 to August 2015 was used to explore the successful end-of-life advocacy of 98 rural Australian district nurses. The findings and results were integrated then compared with theory in this article to develop concepts for a practice model. The model illustrates rural district nurse advocacy success based on respect for the rights and values of people. Advocacy action is motivated by the emotional responses of nurses to the end-of-life vulnerability people experience. The combination of willing investment in relationships, knowing the rural people and resources, and feeling supported, together enables district nurses to develop therapeutic emotional intelligence. This skill promotes moral agency in reflection and advocacy action to overcome emotional and ethical care challenges of access and choice using holistic assessment, communication, organisation of resources and empowering support for the self-determination of person-centred end-of-life goals. Recommendations are proposed from the theoretical concepts in the model. Testing the model in practice is recommended to gain the perceptions of a broader range of rural people both giving and receiving end-of-life-care. A model developed by gathering and comparing district nursing experiences and understanding using mixed methods and existing theory offers evidence for practice of a philosophy of successful person-centred advocacy care in a field of nursing that lacks specific

  8. Third-year Australian nursing students' attitudes, experiences, knowledge, and education concerning end-of-life care.

    Science.gov (United States)

    Adesina, Oluwatomilayo; DeBellis, Anita; Zannettino, Lana

    2014-08-01

    Nurses have a vital role in providing end-of-life care to patients and their families, and it is important that nursing students are adequately prepared for this role. This article reports on qualitative findings from research that explored a cohort of third-year undergraduate Australian nursing students' attitudes, experiences, knowledge, and education concerning end-of-life care. The study used open-ended questions in a purpose-designed, self-administered questionnaire and thematic analysis of the responses. Five themes emerged from the analysis: the importance of the students' values and beliefs, the influence of experience, their views on what constitutes a good or bad death, their knowledge of ethics and legislation surrounding end-of-life care, and how they perceived their level of education and knowledge. The need for more education on end-of-life care has implications for curriculum development in undergraduate nursing programmes, which need to provide graduating nurses with the necessary knowledge and skills to deliver quality care to patients who are dying and their families.

  9. Intensity of Care at the End of Life Among Older Adults in Korea.

    Science.gov (United States)

    Kim, Su Hyun; Kang, Sangwook; Song, Mi-Kyung

    2018-01-01

    To examine the intensity of care at the end of life among older adults in Korea and to identify the individual and institutional factors associated with care intensity. This secondary data analysis included a sample of 6278 decedents aged 65 years or older who were identified from the 2009 to 2010 Korean National Health Insurance Service-National Sample Cohort Claims data. We examined the medical care received by the cohort in the last 30 days of their lives. Overall, 36.5% of the sample received at least 1 intensive care procedure in the last 30 days of their lives; 26.3% of patients experienced intensive care unit admission, with an average stay of 7.45 days, 19.5% received mechanical ventilation, 12.3% received cardiopulmonary resuscitation, and 15.5% had a feeding tube placement. A statistical analysis using a multiple logistic regression model with random effects showed that younger age, higher household income, primary diagnoses of diseases (ischemic heart disease, infectious disease, chronic lung disease, or chronic heart disease), and characteristics of care setting (large hospitals and facilities located in metropolitan areas) were significantly associated with the likelihood of receiving high-intensity care at the end of life. A substantial number of older adults in Korea experienced high-intensity end-of-life care. Both individual and institutional factors were associated with the likelihood of receiving high-intensity care. Gaining an understanding of the intensity of care at the end of life and the impact of the determinants would advance efforts to improve quality of care at the end of life for older adults in Korea.

  10. Factors Affecting Patients' Preferences for and Actual Discussions About End-of-Life Care.

    Science.gov (United States)

    Fakhri, Shoaib; Engelberg, Ruth A; Downey, Lois; Nielsen, Elizabeth L; Paul, Sudiptho; Lahdya, Alexandria Z; Treece, Patsy D; Curtis, J Randall

    2016-09-01

    Discussions about end-of-life care are often difficult for patients and clinicians, and inadequate communication poses a barrier to patients receiving the care they desire. To understand factors that facilitate end-of-life care discussions that guide interventions to improve care. We examined baseline data from an ongoing randomized trial to evaluate associations between patients' self-reported desire for, and occurrence of, discussions about end-of-life care and factors influencing these discussions. Factors included emotional symptoms and barriers and facilitators to discussions. The sample included patients with serious illness (n = 473) and their primary or specialty care clinicians (n = 128). Regression analyses were adjusted for confounders and clustered patients under clinicians. Patients who endorsed each of three barriers to discussions were less likely to have had a discussion with their clinician (P-values ranging from communication about end-of-life care is associated with patient factors including communication barriers and facilitators and symptoms of depression and anxiety. Understanding these factors may facilitate design of effective communication interventions. Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  11. From vulnerability to passion in the end-of-life care: The lived experience of nurses.

    Science.gov (United States)

    Liu, Ying-Chun; Chiang, Hsien-Hsien

    2017-12-01

    End-of-life (EOL) care is considered to be inherently difficult and vulnerable for patients and nurses. It also seems hard to develop passion for care during these problematic times. This study elucidates how EOL nurses interpret their care experience and how they transform their experience and mindset. This study was conducted by organizing a reflective group based on the concept of group analysis for oncology and hospice nurses to share their experience. Thirteen registered nurses were enrolled from a medical center in northern Taiwan. Data drawn from the group dialogue was derived from six digitally recorded sessions and then analysed alone with the researcher's diaries and participants' feedback sheets. Interpretative Phenomenological Analysis (IPA) was used to analyze the data. The results showed that nurses who provide EOL care actually experience suffering by witnessing patients' suffering. However, the suffering authentically drives the nurses to encounter their own inner selves, to induce the shift of mindset, and then allow them to continuously provide and maintain the passion in EOL care. This study provides a new viewpoint for understanding of EOL nurses' experiences, indicating that this line of work may be recognized as a privilege. We recommend that the setting of a nurse reflective group is important and it may be considered in providing EOL care training for nurses. Hopefully the study results could shed lights for future policies regarding EOL care. Copyright © 2017 Elsevier Ltd. All rights reserved.

  12. Feedback on end-of-life care in dementia: the study protocol of the FOLlow-up project.

    Science.gov (United States)

    Boogaard, Jannie A; van Soest-Poortvliet, Mirjam C; Anema, Johannes R; Achterberg, Wilco P; Hertogh, Cees M P M; de Vet, Henrica C W; van der Steen, Jenny T

    2013-08-07

    End-of-life care in dementia in nursing homes is often found to be suboptimal. The Feedback on End-of-Life care in dementia (FOLlow-up) project tests the effectiveness of audit- and feedback to improve the quality of end-of-life care in dementia. Nursing homes systematically invite the family after death of a resident with dementia to provide feedback using the End-of-Life in Dementia (EOLD) - instruments. Two audit- and feedback strategies are designed and tested in a three-armed Randomized Controlled Trial (RCT): a generic feedback strategy using cumulative EOLD-scores of a group of patients and a patient specific feedback strategy using EOLD-scores on a patient level. A total of 18 nursing homes, three groups of six homes matched on size, geographic location, religious affiliation and availability of a palliative care unit were randomly assigned to an intervention group or the control group. The effect on quality of care and quality of dying and the barriers and facilitators of audit- and feedback in the nursing home setting are evaluated using mixed-method analyses. The FOLlow-up project is the first study to assess and compare the effect of two audit- and feedback strategies to improve quality of care and quality of dying in dementia. The results contribute to the development of practice guidelines for nursing homes to monitor and improve care outcomes in the realm of end-of-life care in dementia. The Netherlands National Trial Register (NTR). NTR3942.

  13. Moral distress in end-of-life care in the intensive care unit.

    Science.gov (United States)

    St Ledger, Una; Begley, Ann; Reid, Joanne; Prior, Lindsay; McAuley, Danny; Blackwood, Bronagh

    2013-08-01

    To explore moral distress in relatives doctors and nurses, in end-of-life care decision-making, in the adult intensive care unit. Many deaths in intensive care involve decisions about withholding and withdrawing therapy, potentially triggering moral distress. Moral distress occurs when individuals feel constrained from acting in accordance with moral choice, or act against moral judgement, generating painful, unresolved emotions, and problems that continue long after an event. Prior research has focused mainly on nurses; less is known about doctors' experiences and occurrence and impact on relatives is unknown. A narrative inquiry case study approach, funded by a Northern Ireland Health and Social Care Doctorate Fellowship Award (April 2011). In-depth digitally recorded interviews will be conducted with relatives, doctors, and nurses involved in end-of-life cases comprising: (1) withdrawal of therapy, including circulatory death organ donation; (2) non-escalation of therapy; and (3) brain stem death with a request for organ donation. Relatives will be offered the opportunity to share their experiences on 'Healthtalkonline' by copyrighting audio-visual interviews to the Health Experiences Research Group, Oxford University. Research Ethics Committee approval was obtained (April 2012). This is the first time that moral distress is explored, in a case approach, among relatives, doctors, and nurses intimately involved in end-of-life decisions in intensive care. Dissemination of findings will make a large contribution to international knowledge and understanding in this area and alert healthcare professionals and relatives to an otherwise under-recognized, but potentially detrimental, experience. Findings will inform education, practice, and policy. © 2012 Blackwell Publishing Ltd.

  14. Nurses' autonomy in end-of-life situations in intensive care units.

    Science.gov (United States)

    Paganini, Maria Cristina; Bousso, Regina Szylit

    2015-11-01

    The intensive care unit environment focuses on interventions and support therapies that prolong life. The exercise by nurses of their autonomy impacts on perception of the role they assume in the multidisciplinary team and on their function in the intensive care unit context. There is much international research relating to nurses' involvement in end-of-life situations; however, there is a paucity of research in this area in Brazil. In the Brazilian medical scenario, life support limitation generated a certain reluctance of a legal nature, which has now become unjustifiable with the publication of a resolution by the Federal Medical Council. In Brazil, the lack of medical commitments to end-of-life care is evident. To understand the process by which nurses exercise autonomy in making end-of-life decisions in intensive care units. Symbolic Interactionism and Corbin and Strauss theory methodology were used for this study. Data were collected through single audio-recorded qualitative interviews with 14 critical care nurses. The comparative analysis of the data has permitted the understanding of the meaning of nurse's experience in exercising autonomy relating to end-of-life decision-making. Institutional ethics approval was obtained for data collection. Participants gave informed consent. All data were anonymized. The results revealed that nurses experience the need to exercise autonomy in intensive care units on a daily basis. Their experience expressed by the process of increase opportunities to exercise autonomy is conditioned by the pressure of the intensive care unit environment, in which nurses can grow, feel empowered, and exercise their autonomy or else can continuously depend on the decisions made by other professionals. Nurses exercise their autonomy through care. They work to create new spaces at the same time that they acquire new knowledge and make decisions. Because of the complexity of the end-of-life situation, nurses must adopt a proactive attitude

  15. "End-of-Life Care? I'm not Going to Worry About That Yet." Health Literacy Gaps and End-of-Life Planning Among Elderly Dialysis Patients.

    Science.gov (United States)

    Ladin, Keren; Buttafarro, Katie; Hahn, Emily; Koch-Weser, Susan; Weiner, Daniel E

    2018-03-19

    Between 2000 and 2012, the incident dialysis population in the United States increased by nearly 60%, most sharply among adults 75 years and older. End-of-life (EOL) conversations among dialysis patients are associated with better patient-centered outcomes and lower use of aggressive interventions in the last month of life. This study examined how health literacy may affect engagement, comprehension, and satisfaction with EOL conversations among elderly dialysis patients. Qualitative/descriptive study with semi-structured interviews about health literacy, EOL conversations, and goals of care with 31 elderly dialysis patients at 2 centers in Boston. Themes were interpreted in the context of Nutbeam's health literacy framework. Despite high mortality risk in this population, only 13% of patients had discussed EOL preferences with physicians, half had discussed EOL with their social network, and 25% of participants explicitly stated that they had never considered EOL preferences. Less than 30% of participants could correctly define terminology commonly used in EOL conversations. Analyses yielded 5 themes: (1) Misunderstanding EOL terminology; (2) Nephrologists reluctant to discuss EOL; (3) Patients conforming to socially constructed roles; (4) Discordant expectations and dialysis experiences; and (5) Reconciling EOL values and future care. Patients had limited understanding of EOL terminology, lacked of opportunities for meaningful EOL discussion with providers and family, resulting in uncertainty about future care. Limited health literacy presents a substantial barrier to communication and could lead to older adults committing to an intensive pattern of care without adequate information. Clinicians should consider health literacy when discussing dialysis initiation.

  16. Patient-Clinician Communication About End-of-Life Care in Patients With Advanced Chronic Organ Failure During One Year.

    Science.gov (United States)

    Houben, Carmen H M; Spruit, Martijn A; Schols, Jos M G A; Wouters, Emiel F M; Janssen, Daisy J A

    2015-06-01

    Patient-clinician communication is an important prerequisite to delivering high-quality end-of-life care. However, discussions about end-of-life care are uncommon in patients with advanced chronic organ failure. The aim was to examine the quality of end-of-life care communication during one year follow-up of patients with advanced chronic organ failure. In addition, we aimed to explore whether and to what extent quality of communication about end-of-life care changes toward the end of life and whether end-of-life care communication is related to patient-perceived quality of medical care. Clinically stable outpatients (n = 265) with advanced chronic obstructive pulmonary disease, chronic heart failure, or chronic renal failure were visited at home at baseline and four, eight, and 12 months after baseline to assess quality of end-of-life care communication (Quality of Communication questionnaire). Two years after baseline, survival status was assessed, and if patients died during the study period, a bereavement interview was done with the closest relative. One year follow-up was completed by 77.7% of the patients. Quality of end-of-life care communication was rated low at baseline and did not change over one year. Quality of end-of-life care communication was comparable for patients who completed two year follow-up and patients who died during the study. The correlation between quality of end-of-life care communication and satisfaction with medical treatment was weak. End-of-life care communication is poor in patients with chronic organ failure and does not change toward the end of life. Future studies should develop an intervention aiming at initiating high-quality end-of-life care communication between patients with advanced chronic organ failure and their clinicians. Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  17. Danish general practitioners’ self-reported competences in end-of-life care

    Science.gov (United States)

    Winthereik, Anna; Neergaard, Mette; Vedsted, Peter; Jensen, Anders

    2016-01-01

    Objective General practitioners (GPs) are pivotal in end-of-life (EOL) care. This study aimed to assess GP-reported provision of EOL care and to assess associations with GP characteristics. Design Population-based questionnaire study. Setting Central Denmark Region with approximately 1.3 million inhabitants. Subjects All 843 active GPs in the Central Denmark Region were sent a questionnaire by mail. Main outcome measures Responses to 18 items concerning four aspects: provision of EOL care to patients with different diagnosis, confidence with being a key worker, organisation of EOL care and EOL skills (medical and psychosocial). Results In total, 573 (68%) GPs responded. Of these, 85% often/always offered EOL care to cancer patients, which was twice as often as to patients with non-malignancies (34–40%). Moreover, 76% felt confident about being a key worker, 60% had a proactive approach, and 58% talked to their patients about dying. Only 9% kept a register of patients with EOL needs, and 19% had specific EOL procedures. GP confidence with own EOL skills varied; from 55% feeling confident using terminal medications to 90% feeling confident treating nausea/vomiting. Increasing GP age was associated with increased confidence about being a key worker and provision of EOL care to patients with non-malignancies. In rural areas, GPs were more confident about administering medicine subcutaneously than in urban areas. Conclusion We found considerable diversity in self-reported EOL care competences. Interventions should focus on increasing GPs’ provision of EOL care to patients with non-malignancies, promoting better EOL care concerning organisation and symptom management. KEY POINTSGPs are pivotal in end-of-life (EOL) care, but their involvement has been questioned. Hence, GPs’ perceived competencies were explored.GPs were twice as likely to provide EOL care for patients with cancer than for patients with non-malignancies.EOL care was lacking clear organisation in

  18. End-of-Life Care and Discussions in Japanese Geriatric Health Service Facilities: A Nationwide Survey of Managing Directors' Viewpoints.

    Science.gov (United States)

    Kanoh, Asako; Kizawa, Yoshiyuki; Tsuneto, Satoru; Yokoya, Shoji

    2018-01-01

    Geriatric health service facilities (GHSFs) play important roles as intermediate care facilities for elderly individuals temporarily when they need rehabilitation before returning home. However, the number of residents spending their end-of-life (EOL) period in such facilities is increasing. To improve the quality of EOL care, end-of-life discussions (EOLDs) are recommended by some guidelines and studies. This study aimed to clarify the current practice of EOL care and EOLDs in GHSFs in Japan. We conducted a nationwide cross-sectional survey by mailing questionnaires about EOL care and EOLDs to 3437 GHSF managing directors. The questionnaire was developed through a literature review and discussion among the researchers and experts. Descriptive statistics summarized the data. We also analyzed the factors related to GHSFs conducting EOLDs using Fisher exact tests. The response rate was 20.7% (713 of 3437). Among the respondents, 75.2% (536 of 713) of GHSFs provided EOL care and 73.1% (521 of 713) conducted EOLDs. The most common reasons for difficulties in providing EOL care included the lack of EOL education for nurses and care workers, and their fear about caring for dying residents. End-of-life discussions were mostly initiated after the deterioration of a resident's condition and were conducted with families by physicians. Statistically significant factors of GHSFs conducting EOLDs included providing EOL education for nurses and care workers, availability of private room for critically ill residents, emergency on-call doctors, and EOL care. Adequate practical staff education programs for EOL care including EOLDs may be crucial for quality of end-of-life care in aged care facilities.

  19. Parent Perspectives of Neonatal Intensive Care at the End-of-Life.

    Science.gov (United States)

    Currie, Erin R; Christian, Becky J; Hinds, Pamela S; Perna, Samuel J; Robinson, Cheryl; Day, Sara; Meneses, Karen

    2016-01-01

    This descriptive qualitative study explored parent experiences related to their infant's neonatal intensive care unit (NICU) hospitalization, end-of-life care, and palliative care consultation. "Life and death in the NICU environment" emerged as the primary theme with the following categories: ups and downs of parenting in the NICU, decision-making challenges in the NICU, and parent support. Parents encountered challenges with areas for improvement for end-of-life and palliative care in the NICU. Further research is necessary to understand barriers with integrating palliative care and curative care in the NICU, and how NICU care affects bereavement and coping outcomes after infant death. Copyright © 2016 Elsevier Inc. All rights reserved.

  20. A Framework for Categorizing Social Interactions Related to End-of-Life Care in Nursing Homes

    Science.gov (United States)

    Bern-Klug, Mercedes

    2009-01-01

    Purpose: Almost half of people age 85 and older who die annually in the United States die as nursing home residents, yet because it is not always clear who is close to death, not all residents who might benefit from end-of-life care receive it. The purpose of this study is to develop a framework for organizing social interactions related to…

  1. [The nursing role and ethical dimension of end of life care].

    Science.gov (United States)

    Daydé, Marie-Claude

    2016-02-01

    Supporting people in situations of precarity at the end of life is often fraught with complex problems, where one form of vulnerability amplifies another. This complexity requires interdisciplinary support, around the nursing care, to reflect together on the meaning of the action taken in an ethical approach. Copyright © 2015 Elsevier Masson SAS. All rights reserved.

  2. Talking about end-of-life care in a timely manner

    NARCIS (Netherlands)

    Smeenk, Frank W. J. M.; Schrijver, Laurien A; van Bavel, Hennie C. J.; van de Laar, Eric F. J.

    2017-01-01

    In 2014, a group of physicians of the Catharina Hospital in Eindhoven (The Netherlands) started a project called “Talking about end-of-life care in a timely manner”. Just like others in the country, the Eindhoven group noticed that regularly, very frail elderly people were admitted to hospital in

  3. End of life care in sub-Saharan Africa: a systematic review of the qualitative literature

    NARCIS (Netherlands)

    Gysels, M.H.; Pell, C.; Straus, L.; Pool, R.

    2011-01-01

    Background End of life (EoL) care in sub-Saharan Africa still lacks the sound evidence-base needed for the development of effective, appropriate service provision. It is essential to make evidence from all types of research available alongside clinical and health service data, to ensure that EoL

  4. The Changing Nature of Guilt in Family Caregivers: Living Through Care Transitions of Parents at the End of Life.

    Science.gov (United States)

    Martz, Kim; Morse, Janice M

    2017-06-01

    Older adults cared for at home by family members at the end of life are at risk for care transitions to residential and institutional care settings. These transitions are emotionally distressing and fraught with suffering for both families and the older adult. A theoretical model titled "The Changing Nature of Guilt in Family Caregivers: Living Through Care Transitions of Parents at the End of Life" was developed using the method of grounded theory. When a dying parent cannot remain at home to die, family members experience guilt throughout the transition process. Findings indicated that guilt surrounding transfers escalated during the initial stages of the transfer but was mitigated by achieving what family members deemed as a "good" death when relatives were receiving hospice care. The findings of this interpretative approach provide new insights into family-focused perspectives in care transfers of the dying.

  5. Associations between Race and Dementia Status and the Quality of End-of-Life Care.

    Science.gov (United States)

    Luth, Elizabeth A; Prigerson, Holly G

    2018-04-05

    Non-Hispanic black and dementia patients receive more invasive and futile treatment at end of life (EOL) relative to others. Little is known about the relationship between race/ethnicity, dementia, and EOL care quality. Identify the relationship between race/ethnicity, dementia, and proxy reporters' evaluation of EOL care quality in older adults. Latent class analysis (LCA) of national survey data. 1588 deceased Medicare beneficiaries age 65 and older from the National Health and Aging Trends Study (2011-2016). LCA identified three types of quality EOL care using nine measures of symptom management, quality of healthcare encounters, and dignified treatment. Race and dementia were primary predictors of EOL care quality type. Adjusted models controlled for decedent education, sex, marital status, age, number of illnesses, number of hospitalizations, self-rated health, place of death, hospice involvement, and proxy relationship to decedent and familiarity with care. Over 20% of proxies report that dying individuals experienced suboptimal EOL care quality, characterized by pain, sadness, poor communication, and inattention to personal care needs. In adjusted analyses, proxies for non-Hispanic black decedents were less likely to provide negative care assessments than proxies for non-Hispanic white decedents (adjusted odds ratio [AOR]: 0.58; 95% confidence interval [CI]: 0.40-0.86). Proxies for decedents with dementia were less likely to provide negative assessments than proxies for decedents without dementia (AOR: 0.70; 95% CI: 0.51-0.97). Efforts to improve EOL care quality are needed. More positive EOL care quality assessments for non-Hispanic Black and dementia decedents appear counterintuitive given research demonstrating that these groups of individuals are likely to have received suboptimal EOL care. Because caregiver expectations for care may differ by decedent race and dementia status, research is needed to explore the role of caregiver expectations for EOL care

  6. Seeking worldwide professional consensus on the principles of end-of-life care for the critically ill. The Consensus for Worldwide End-of-Life Practice for Patients in Intensive Care Units (WELPICUS) study.

    Science.gov (United States)

    Sprung, Charles L; Truog, Robert D; Curtis, J Randall; Joynt, Gavin M; Baras, Mario; Michalsen, Andrej; Briegel, Josef; Kesecioglu, Jozef; Efferen, Linda; De Robertis, Edoardo; Bulpa, Pierre; Metnitz, Philipp; Patil, Namrata; Hawryluck, Laura; Manthous, Constantine; Moreno, Rui; Leonard, Sara; Hill, Nicholas S; Wennberg, Elisabet; McDermid, Robert C; Mikstacki, Adam; Mularski, Richard A; Hartog, Christiane S; Avidan, Alexander

    2014-10-15

    Great differences in end-of-life practices in treating the critically ill around the world warrant agreement regarding the major ethical principles. This analysis determines the extent of worldwide consensus for end-of-life practices, delineates where there is and is not consensus, and analyzes reasons for lack of consensus. Critical care societies worldwide were invited to participate. Country coordinators were identified and draft statements were developed for major end-of-life issues and translated into six languages. Multidisciplinary responses using a web-based survey assessed agreement or disagreement with definitions and statements linked to anonymous demographic information. Consensus was prospectively defined as >80% agreement. Definitions and statements not obtaining consensus were revised based on comments of respondents, and then translated and redistributed. Of the initial 1,283 responses from 32 countries, consensus was found for 66 (81%) of the 81 definitions and statements; 26 (32%) had >90% agreement. With 83 additional responses to the original questionnaire (1,366 total) and 604 responses to the revised statements, consensus could be obtained for another 11 of the 15 statements. Consensus was obtained for informed consent, withholding and withdrawing life-sustaining treatment, legal requirements, intensive care unit therapies, cardiopulmonary resuscitation, shared decision making, medical and nursing consensus, brain death, and palliative care. Consensus was obtained for 77 of 81 (95%) statements. Worldwide consensus could be developed for the majority of definitions and statements about end-of-life practices. Statements achieving consensus provide standards of practice for end-of-life care; statements without consensus identify important areas for future research.

  7. Danish general practitioners? self-reported competences in end-of-life care

    OpenAIRE

    Winthereik, Anna; Neergaard, Mette; Vedsted, Peter; Jensen, Anders

    2016-01-01

    Objective General practitioners (GPs) are pivotal in end-of-life (EOL) care. This study aimed to assess GP-reported provision of EOL care and to assess associations with GP characteristics. Design Population-based questionnaire study. Setting Central Denmark Region with approximately 1.3 million inhabitants. Subjects All 843 active GPs in the Central Denmark Region were sent a questionnaire by mail. Main outcome measures Responses to 18 items concerning four aspects: provision of EOL care to ...

  8. Palliative care and end-of-life care for polypathological patients.

    Science.gov (United States)

    Martinez-Litago, E; Martínez-Velasco, M C; Muniesa-Zaragozano, M P

    2017-12-01

    Patients with advanced chronic diseases receive fragmented care, which entails high resource consumption and a poor quality of life. Uncertainty in the prognosis and scarce investigation into the importance of symptomatic control in this patient group hinders a proper therapeutic approach. Palliative care teams optimise the use of resources through comprehensive patient care, the optimization of the patient's environment, communication, the preparation of early care plans and the creation of coordinated healthcare circuits, which improve the quality of the patient's care in advanced stages of the disease. In the end-of-life phase, the therapeutic approach is focused on symptomatic control, selecting treatments according to the cause, comorbidities and the patient's wishes. To control refractory symptoms, palliative sedation is considered an indispensable option. Copyright © 2017 Elsevier España, S.L.U. and Sociedad Española de Medicina Interna (SEMI). All rights reserved.

  9. Let's Talk About It: Supporting Family Communication during End-of-Life Care of Pediatric Patients.

    Science.gov (United States)

    Marsac, Meghan L; Kindler, Christine; Weiss, Danielle; Ragsdale, Lindsay

    2018-05-18

    Communication is key in optimizing medical care when a child is approaching end of life (EOL). Research is yet to establish best practices for how medical teams can guide intrafamily communication (including surviving siblings) when EOL care is underway or anticipated for a pediatric patient. While recommendations regarding how medical teams can facilitate communication between the medical team and the family exist, various barriers may prevent the implementation of these recommendations. This review aims to provide a summary of research-to-date on family and medical provider perceptions of communication during pediatric EOL care. Systematic review. Findings from a review of 65 studies suggest that when a child enters EOL care, many parents try to protect their child and/or themselves by avoiding discussions about death. Despite current recommendations, medical teams often refrain from discussing EOL care with pediatric patients until death is imminent for a variety of reasons (e.g., family factors and discomfort with EOL conversations). Parents consistently report a need for honest complete information, delivered with sensitivity. Pediatric patients often report a preference to be informed of their prognosis, and siblings express a desire to be involved in EOL discussions. Families may benefit from enhanced communication around EOL planning, both within the family and between the family and medical team. Future research should investigate a potential role for medical teams in supporting intrafamily communication about EOL challenges and should examine how communication between medical teams and families can be facilitated as EOL approaches.

  10. [End-of-life care in a Spanish Pediatric Intensive Care Unit: staff and parental evaluation].

    Science.gov (United States)

    Tagarro García, A; Dorao Martínez-Romillo, P; Moraleda, S; López, P; Moreno, T; San-José, B; Martínez Biarge, M; Tapia Moreno, R; Ruza-Tarrío, F

    2008-04-01

    To evaluate end-of-life care in a Paediatric Intensive Care Unit (PICU). Retrospective study developed in a PICU. 41 workers from the PICU and parents of 26 deceased children (from 2001 to 2005). A questionnaire was designed to investigate end-of-life care. An age parents were with their children at the time of death; 64 % of all parents consider this "positive", and 13 % consider it "negative". Forty per cent of staff stated that it is "positive" for parents to be by the side of their child at the time of death, and 52 % do not know. Seventy-three per cent of staff, but only 29 % of parents want further professional psychological support for parents. Twenty per cent of children died following withdrawal of life support. The most important factors for this decision were the possibility of survival and quality of life. The majority (73 %) of caregivers express the view that often, this decision should be taken earlier. Analysis of staff opinions underlines the importance of the way news is communicated, the timing of withdrawal of life support, and the need for psychological support. Parents emphasized the role of the family during time spent in a PICU and during the last moments.

  11. The impact of regional culture on intensive care end of life decision making: an Israeli perspective from the ETHICUS study.

    Science.gov (United States)

    Ganz, F D; Benbenishty, J; Hersch, M; Fischer, A; Gurman, G; Sprung, C L

    2006-04-01

    Decisions of patients, families, and health care providers about medical care at the end of life depend on many factors, including the societal culture. A pan-European study was conducted to determine the frequency and types of end of life practices in European intensive care units (ICUs), including those in Israel. Several results of the Israeli subsample were different to those of the overall sample. The objective of this article was to explore these differences and provide a possible explanation based on the impact of culture on end of life decision making. All adult patients admitted consecutively to three Israeli ICUs (n = 2778) who died or underwent any limitation of life saving interventions between 1 January 1999 and 30 June 2000 were studied prospectively (n = 363). These patients were compared with a similar sample taken from the larger study (ethics in European intensive care units: ETHICUS) carried out in 37 European ICUs. Patients were followed until discharge, death, or 2 months from the decision to limit therapy. End of life decisions were prospectively organised into one of five mutually exclusive categories: cardiopulmonary resuscitation (CPR), brain death, withholding treatment, withdrawing treatment, and active shortening of the dying process (SDP). The data also included patient characteristics (gender, age, ICU admission diagnosis, chronic disorders, date of hospital admission, date and time of decision to limit therapy, date of hospital discharge, date and time of death in hospital), specific therapies limited, and the method of SDP. The majority of patients (n = 252, 69%) had treatment withheld, none underwent SDP, 62 received CPR (17%), 31 had brain death (9%), and 18 underwent withdrawal of treatment (5%). The primary reason given for limiting treatment was that the patient was unresponsive to therapy (n = 187). End of life discussions were held with 132 families (36%), the vast majority of which revolved around withholding treatment (91

  12. Hospice family members’ perceptions and experiences with end-of-life care in the nursing home

    Science.gov (United States)

    Washington, Karla; Kruse, Robin L.; Albright, David L; Lewis, Alexandria; Demiris, George

    2014-01-01

    Objective Despite the fact that more than 25% of Americans die in nursing homes, end-of-life care has consistently been found to be less than adequate in this setting. Even for those residents on hospice, end-of-life care has been found to be problematic. This study had two research questions; 1) How do family members of hospice nursing home residents differ in their anxiety, depression, quality of life, social networks, perceptions of pain medication, and health compared to family members of community dwelling hospice patients? 2) What are family members’ perceptions of and experiences with end-of-life care in the nursing home setting? Methods This study is a secondary mixed methods analysis of interviews with family members of hospice nursing home residents and a comparative statistical analysis of standard outcome measures between family members of hospice patients in the nursing home and family member of hospice patients residing in the community. Results Outcome measures for family members of nursing home residents were compared (n=176) with family members of community dwelling hospice patients (n=267). The family members of nursing home residents reported higher quality of life however, levels of anxiety, depression, perceptions of pain medicine, and health were similar for hospice family members in the nursing home and in the community. Lending an understanding to the stress for hospice family members of nursing home residents concerns were found with collaboration between the nursing home and the hospice, nursing home care that did not meet family expectations, communication problems, and resident care concerns including pain management. Some family members reported positive end-of-life care experiences in the nursing home setting. Conclusion These interviews identify a multitude of barriers to quality end-of-life care in the nursing home setting, and demonstrate that support for family members is an essential part of quality end-of-life care for

  13. End-of-Life Care for People With Cancer From Ethnic Minority Groups: A Systematic Review.

    Science.gov (United States)

    LoPresti, Melissa A; Dement, Fritz; Gold, Heather T

    2016-04-01

    Ethnic/racial minorities encounter disparities in healthcare, which may carry into end-of-life (EOL) care. Advanced cancer, highly prevalent and morbid, presents with worsening symptoms, heightening the need for supportive and EOL care. To conduct a systematic review examining ethnic/racial disparities in EOL care for cancer patients. We searched four electronic databases for all original research examining EOL care use, preferences, and beliefs for cancer patients from ethnic/racial minority groups. Twenty-five studies were included: 20 quantitative and five qualitative. All had a full-text English language article and focused on the ethnic/racial minority groups of African Americans, Hispanics Americans, or Asian Americans. Key themes included EOL decision making processes, family involvement, provider communication, religion and spirituality, and patient preferences. Hospice was the most studied EOL care, and was most used among Whites, followed by use among Hispanics, and least used by African and Asian Americans. African Americans perceived a greater need for hospice, yet more frequently had inadequate knowledge. African Americans preferred aggressive treatment, yet EOL care provided was often inconsistent with preferences. Hispanics and African Americans less often documented advance care plans, citing religious coping and spirituality as factors. EOL care differences among ethnic/racial minority cancer patients were found in the processes, preferences, and beliefs regarding their care. Further steps are needed to explore the exact causes of differences, yet possible explanations include religious or cultural differences, caregiver respect for patient autonomy, access barriers, and knowledge of EOL care options. © The Author(s) 2014.

  14. Caring Decisions: The Development of a Written Resource for Parents Facing End-of-Life Decisions

    OpenAIRE

    Xafis, Vicki; Gillam, Lynn; Hynson, Jenny; Sullivan, Jane; Cossich, Mary; Wilkinson, Dominic

    2015-01-01

    Background: Written resources in adult intensive care have been shown to benefit families facing end of life (EoL) decisions. There are few resources for parents making EoL decisions for their child and no existing resources addressing ethical issues. TheCaring Decisionshandbook and website were developed to fill these gaps. Aim: We discuss the development of the resources, modification after reviewer feedback and findings from initial pilot implementation. Design: A targeted...

  15. Impacts of care-giving and sources of support: a comparison of end-of-life and non-end-of-life caregivers in Canada.

    Science.gov (United States)

    Williams, Allison M; Wang, Li; Kitchen, Peter

    2016-03-01

    This is the second in a series of papers that deal with care-giving in Canada, as based on data available from the Canadian General Social Survey (2007). Building on the first paper, which reviewed the differences between short-term, long-term and end-of-life (EOL) caregivers, this paper uniquely examines the caregiver supports employed by EOL caregivers when compared to non-EOL caregivers (short-term and long-term caregivers combined). Both papers employ data from Statistics Canada's General Social Survey (GSS Cycle 21: 2007). The GSS includes three modules, where respondents were asked questions about the unpaid home care assistance that they had provided in the last 12 months to someone at EOL or with either a long-term health condition or a physical limitation. The objective of this research paper was to investigate the link between the impact of the care-giving experience and the caregiver supports received, while also examining the differences in these across EOL and non-EOL caregivers. By way of factor analysis and regression modelling, we examine differences between two types of caregivers: (i) EOL and (ii) non-EOL caregivers. The study revealed that with respect to socio-demographic characteristics, health outcomes and caregiver supports, EOL caregivers were consistently worse off. This suggests that although all non-EOL caregivers are experiencing negative impacts from their care-giving role, comparatively greater supports are needed for EOL caregivers. © 2015 The Authors. Health and Social Care in the Community Published by John Wiley & Sons Ltd.

  16. Caring Decisions: The Development of a Written Resource for Parents Facing End-of-Life Decisions.

    Science.gov (United States)

    Xafis, Vicki; Gillam, Lynn; Hynson, Jenny; Sullivan, Jane; Cossich, Mary; Wilkinson, Dominic

    2015-11-01

    Written resources in adult intensive care have been shown to benefit families facing end of life (EoL) decisions. There are few resources for parents making EoL decisions for their child and no existing resources addressing ethical issues. The Caring Decisions handbook and website were developed to fill these gaps. We discuss the development of the resources, modification after reviewer feedback and findings from initial pilot implementation. A targeted literature review-to identify resources and factors that impact on parental EoL decision-making; development phase-guided by the literature and the researchers' expertise; consultation process-comprised a multi-disciplinary panel of experts and parents; pilot evaluation study-hard-copy handbook was distributed as part of routine care at an Australian Children's Hospital. Twelve experts and parents formed the consultation panel. Eight parents of children with life-limiting conditions and clinicians were interviewed in the pilot study. Numerous factors supporting/impeding EoL decisions were identified. Caring Decisions addressed issues identified in the literature and by the multidisciplinary research team. The consultation panel provided overwhelmingly positive feedback. Pilot study parents found the resources helpful and comforting. Most clinicians viewed the resources as very beneficial to parents and identified them as ideal for training purposes. The development of the resources addressed many of the gaps in existing resources. The consultation process and the pilot study suggest these resources could be of significant benefit to parents and clinicians.

  17. [End-of-life-care and euthanasia: medical assistance in dying or help to die].

    Science.gov (United States)

    Müller-Busch, H Christof

    2008-01-01

    The debate on euthanasia that has been started all over Europe, but especially in Germany has been particularly complicated by unclear and inconsistent definitions. Medical decisions in end-of-life care gain increasing importance not only for the time of death but also for the kind and quality of the dying process. Though legal regulations can help to diminish doubts about the permissibility of various measures in end-of-life care, teaching and knowledge of ethical principles, communication skills, respect, transparency and knowledge of palliative care options seem to be the most important factors in accompanying the dying professionally and with dignity and even in achieving a consented compromise when aid in hastening death is asked for.

  18. Family members' informal roles in end-of-life decision making in adult intensive care units.

    Science.gov (United States)

    Quinn, Jill R; Schmitt, Madeline; Baggs, Judith Gedney; Norton, Sally A; Dombeck, Mary T; Sellers, Craig R

    2012-01-01

    To support the process of effective family decision making, it is important to recognize and understand informal roles that various family members may play in the end-of-life decision-making process. To describe some informal roles consistently enacted by family members involved in the process of end-of-life decision making in intensive care units. Ethnographic study. Data were collected via participant observation with field notes and semistructured interviews on 4 intensive care units in an academic health center in the mid-Atlantic United States from 2001 to 2004. The units studied were a medical, a surgical, a burn and trauma, and a cardiovascular intensive care unit. Health care clinicians, patients, and family members. Informal roles for family members consistently observed were primary caregiver, primary decision maker, family spokesperson, out-of-towner, patient's wishes expert, protector, vulnerable member, and health care expert. The identified informal roles were part of families' decision-making processes, and each role was part of a potentially complicated family dynamic for end-of-life decision making within the family system and between the family and health care domains. These informal roles reflect the diverse responses to demands for family decision making in what is usually a novel and stressful situation. Identification and description of these informal roles of family members can help clinicians recognize and understand the functions of these roles in families' decision making at the end of life and guide development of strategies to support and facilitate increased effectiveness of family discussions and decision-making processes.

  19. Family-centered end-of-life care in the ICU.

    Science.gov (United States)

    Wiegand, Debra L; Grant, Marian S; Cheon, Jooyoung; Gergis, Mary A

    2013-08-01

    Families of older adults are intricately involved in the end-of-life decision-making process for a family member with a serious illness in the intensive care unit (ICU) setting. However, families are not always as involved and as informed as they would like to be. Creating a culture that assesses family needs and supports families is an important component of family-centered care. There are several strategies that nurses and other members of the interdisciplinary team can use to promote family-centered end-of-life care in the ICU. Nurses can get to know the family by spending time talking with them, assessing them, seeking to understand their perspectives on their family member's condition, and discussing previously verbalized patient wishes for care. This article offers strategies nurses can use to help guide the family through the end-of-life decision-making process, support families as difficult and complex decisions are made in collaboration with the health care team, and prepare families for the dying process. Copyright 2013, SLACK Incorporated.

  20. Impact of hospice care on end-of-life hospitalization of elderly patients with lung cancer in Taiwan

    Directory of Open Access Journals (Sweden)

    Shih-Chao Kang

    2012-05-01

    Conclusion: Hospice care has provided a humane and cost-efficient pathway for end-of-life elderly patients with lung cancer. Parenteral nutrition/hydration should be limited for terminal care patients. Opioids should be promoted for the relief of pain and dyspnea in acute ward care. Family physicians and radiation oncologists play important roles in hospice care. Compared with the prevalence of hospice care in the United Kingdom and other developed countries, hospice care in Taiwan is in the position to be expanded.

  1. Making the case for talking to patients about the costs of end-of-life care.

    Science.gov (United States)

    Donley, Greer; Danis, Marion

    2011-01-01

    Costs at the end of life disproportionately contribute to health care costs in the United States. Addressing these costs will therefore be an important component in making the U.S. health care system more financially sustainable. In this paper, we explore the moral justifications for having discussions of end-of-life costs in the doctor-patient encounter as part of an effort to control costs. As health care costs are partly shared through pooled resources, such as insurance and taxation, and partly borne by individuals through out-of-pocket expenses, we separate our defense for, and approach to, discussing both pooled and individual aspects of cost. We argue that there needs to be a shift away from formulating the options as a dichotomous choice of paying attention to end-of-life costs versus ignoring such costs. The question should be how personal costs will be managed and how societal expenditures should be allocated. These are issues that we believe patients care about and need to have addressed in a manner with which they are comfortable. Conversations about how money will be spent at the end of life should begin before the end is near. We propose discussing costs from the onset of chronic illness and incorporating financial issues in advance care planning. Through these approaches one can avoid abruptly and insensitively introducing financial issues at the very conclusion of a person's life when one would prefer to address the painful and important issues of spiritual and existential loss that are appropriately the focus when a person is dying. © 2011 American Society of Law, Medicine & Ethics, Inc.

  2. Ethical Decision Making With End-of-Life Care: Palliative Sedation and Withholding or Withdrawing Life-Sustaining Treatments

    Science.gov (United States)

    Olsen, Molly L.; Swetz, Keith M.; Mueller, Paul S.

    2010-01-01

    Palliative sedation (PS) is the use of medications to induce decreased or absent awareness in order to relieve otherwise intractable suffering at the end of life. Although uncommon, some patients undergoing aggressive symptom control measures still have severe suffering from underlying disease or therapy-related adverse effects. In these circumstances, use of PS is considered. Although the goal is to provide relief in an ethically acceptable way to the patient, family, and health care team, health care professionals often voice concerns whether such treatment is necessary or whether such treatment equates to physician-assisted suicide or euthanasia. In this review, we frame clinical scenarios in which PS may be considered, summarize the ethical underpinnings of the practice, and further differentiate PS from other forms of end-of-life care, including withholding and/or withdrawing life-sustaining therapy and physician-assisted suicide and euthanasia. PMID:20805544

  3. Survey on death and dying in Hong Kong: attitudes, beliefs, and preferred end-of-life care.

    Science.gov (United States)

    Mjelde-Mossey, Lee Ann; Chan, Cecilia L W

    2007-01-01

    Social Workers in end-of-life and palliative care have a particular opportunity to ease the dying process by providing culturally appropriate services to the dying and their families. In today's multicultural social environment, with an ever-increasing immigrant population, social workers are challenged to be knowledgeable about diverse cultures. Recently, a forum of health care professionals and social workers in Hong Kong conducted a survey of the general population to assess death and dying attitudes, beliefs, and preferences for end-of-life care. Four-hundred-thirty Hong Kong Chinese participated in a telephone interview. Responses were compared by gender. The survey results not only contribute to an understanding of Hong Kong Chinese, but can inform social workers who practice with Chinese immigrants to the United States.

  4. Medical futility at the end of life: the perspectives of intensive care and palliative care clinicians.

    Science.gov (United States)

    Jox, Ralf J; Schaider, Andreas; Marckmann, Georg; Borasio, Gian Domenico

    2012-09-01

    Medical futility at the end of life is a growing challenge to medicine. The goals of the authors were to elucidate how clinicians define futility, when they perceive life-sustaining treatment (LST) to be futile, how they communicate this situation and why LST is sometimes continued despite being recognised as futile. The authors reviewed ethics case consultation protocols and conducted semi-structured interviews with 18 physicians and 11 nurses from adult intensive and palliative care units at a tertiary hospital in Germany. The transcripts were subjected to qualitative content analysis. Futility was identified in the majority of case consultations. Interviewees associated futility with the failure to achieve goals of care that offer a benefit to the patient's quality of life and are proportionate to the risks, harms and costs. Prototypic examples mentioned are situations of irreversible dependence on LST, advanced metastatic malignancies and extensive brain injury. Participants agreed that futility should be assessed by physicians after consultation with the care team. Intensivists favoured an indirect and stepwise disclosure of the prognosis. Palliative care clinicians focused on a candid and empathetic information strategy. The reasons for continuing futile LST are primarily emotional, such as guilt, grief, fear of legal consequences and concerns about the family's reaction. Other obstacles are organisational routines, insufficient legal and palliative knowledge and treatment requests by patients or families. Managing futility could be improved by communication training, knowledge transfer, organisational improvements and emotional and ethical support systems. The authors propose an algorithm for end-of-life decision making focusing on goals of treatment.

  5. Intensive Care Nurses' Attitude on Palliative and End of Life Care.

    Science.gov (United States)

    Tripathy, Swagata; Routray, Pragyan K; Mishra, Jagdish C

    2017-10-01

    Intensive Care Unit (ICU) nurses have a vital role in the implementation of end of life (EOL) care. There is limited data on the attitude of ICU nurses toward EOL and palliation. This study aimed to investigate knowledge, attitude, and beliefs of intensive care nurses in eastern India toward EOL. A self-administered questionnaire was distributed to delegates in two regional critical care nurses' training programs. Of 178 questionnaires distributed, 138 completed, with a response rate of 75.5*. About half (48.5*) had more than 1 year ICU experience. A majority (81.9*) agreed that nurses should be involved in and initiate (62.3*) EOL discussions. Terms "EOL care or palliative care in ICU" were new for 19.6*; 21* and 55.8* disagreed with allowing peaceful death in terminal patients and unrestricted family visits, respectively. Work experience was associated with wanting unrestricted family visitation, discontinuing monitoring and investigations at EOL, equating withholding and withdrawal of treatment, and being a part of EOL team discussions ( P = 0.005, 0.01, 0.01, and 0.001), respectively. Religiousness was associated with a greater desire to initiate EOL discussions ( P = 0.001). Greater emphasis on palliative care in critical care curriculum may improve awareness among critical care nurses.

  6. Truncated Autonomy: Neocortical Selves, Reverse Reductionism and End-of-Life Care

    OpenAIRE

    Wackers, Ger

    2016-01-01

    Published version. Source at http://dx.doi.org/10.5772/66044 In professional guidelines for palliative sedation in end-of life care, a particular notion of conscious life experience is associated with specific cognitivist notion of frontal lobe autonomy. Drawing on Turner and Fauconnier’s work in cognitive linguistics I argue in this chapter that even our most central notions like human subjectivity and autonomy are conceptual blends. This chapter explores the origins and eme...

  7. Training needs of nurses and social workers in the end-of-life care for people with intellectual disabilities: a national survey.

    Science.gov (United States)

    Bekkema, Nienke; de Veer, Anke J E; Albers, Gwenda; Hertogh, Cees M P M; Onwuteaka-Philipsen, Bregje D; Francke, Anneke L

    2014-04-01

    Nurses and social workers caring for people with intellectual disabilities are increasingly confronted with clients in need of end-of-life care. Previous studies, however, suggest that professionals in intellectual disability care services lack knowledge and experience concerning end-of-life care. Moreover, the proportion of nurses within the staff of intellectual disability services has declined in recent years, while the proportion of social workers has increased, which may have consequences for the quality of end-of-life care. To gain insight into the quality of end-of-life care, past vocational training, training needs and expert consultation opportunities of nurses and social workers working in intellectual disability care services. Survey questionnaire study conducted in the Netherlands. Intellectual disability care services. The study sample was recruited from an existing nationally representative research panel of care professionals. In 2011, all 181 nurses and social workers in the research panel who worked in intellectual disability care services were sent our survey questionnaire. Postal survey addressing education, views and needs regarding end-of-life care. The response was 71.8%. Respondents positively evaluated the quality of end-of-life care. However, most respondents felt inadequately trained in end-of-life care issues. Nurses had received more training in end-of-life care and had fewer training needs than social workers. Respondents wished for additional training, especially in supporting clients in dealing with the impending death and farewell process. Half of the respondents were unaware of the availability of external consultation facilities. This study shows that although nurses and social workers positively appraise the quality of end-of-life care for people with intellectual disabilities, the majority feel inadequately trained to provide good end-of-life care. As the number of people with intellectual disability in need of end-of-life care

  8. Inuit interpreters engaged in end-of-life care in Nunavik, Northern Quebec.

    Science.gov (United States)

    Hordyk, Shawn Renee; Macdonald, Mary Ellen; Brassard, Paul

    2017-01-01

    Inuit interpreters are key players in end-of-life (EOL) care for Nunavik patients and families. This emotionally intensive work requires expertise in French, English and Inuit dialects to negotiate linguistic and cultural challenges. Cultural differences among medical institutions and Inuit communities can lead to value conflicts and moral dilemmas as interpreters navigate how best to transmit messages of care at EOL. Our goal was to understand the experience of Inuit interpreters in the context of EOL care in Nunavik in order to identify training needs. In the context of a larger ethnographic project on EOL care in Nunavik, we met with 24 current and former interpreters from local health centres and Montreal tertiary care contexts. Data included informal and formal interviews focusing on linguistic resources, experiences concerning EOL care, and suggestions for the development of interpretation training. Inuit working as interpreters in Nunavik are hired to provide multiple services of which interpretation plays only a part. Many have no formal training and have few resources (e.g. visual aids, dictionaries) to draw upon during medical consultations. Given the small size of communities, many interpreters personally know their clients and often feel overwhelmed by moral dilemmas when translating EOL information for patients and families. The concept of moral distress is a helpful lens to make sense of their experience, including personal and professional repercussions. Inuit interpreters in Nunavik are working with little training yet in context with multiple linguistic and cultural challenges. Linguistic and cultural resources and focused training on moral dilemmas unique to circumpolar contexts could contribute to improved work conditions and ultimately to patient care.​​​​.

  9. Using motivational interviewing to facilitate death talk in end-of-life care: an ethical analysis.

    Science.gov (United States)

    Black, Isra; Helgason, Ásgeir Rúnar

    2018-03-21

    Morbidity arising from unprepared bereavement is a problem that affects close personal relations of individuals at the end-of-life. The bereavement studies literature demonstrates that a lack of preparedness for a loved one's death is a risk factor for secondary psychological morbidity among survivors. Short awareness time of death negatively correlates to preparedness for bereavement. The absence of disclosure of end-of-life diagnosis and prognosis to close personal relations ('death talk') between patients and loved ones, or health professionals and loved ones, may contribute to short awareness time of death. To increase awareness time of death, we might attempt to increase patient first-personal disclosure of end-of-life diagnosis and prognosis to loved-ones, and/or patient consent to health professional disclosure of the same. Interventions based on motivational interviewing in end-of-life care whose aim is to facilitate death talk, either by the patient directly, or by a health professional with the patient's consent, may offer a part solution to the problem of unprepared bereavement. This paper evaluates the ethical permissibility of such interventions. We consider two ethical objections to using motivational interviewing in this way: first, that it is inappropriate for practitioners to seek disclosure as an outcome in this setting; second, that aiming at disclosure risks manipulating individuals into death talk. While it need not be impermissible to direct individuals toward disclosure of end-of-life diagnosis/prognosis, the objection from manipulation implies that it is pro tanto ethically preferable to use motivational interviewing in a non-directive mode in death talk conversations. However, insofar as non-directive motivational interviewing requires more advanced skills, and thus may be more difficult to learn and to practise, we advance that it may be ethically permissible, all things considered, to employ directional, or specific outcome

  10. Parental perceptions of forgoing artificial nutrition and hydration during end-of-life care.

    Science.gov (United States)

    Rapoport, Adam; Shaheed, Jenny; Newman, Christine; Rugg, Maria; Steele, Rose

    2013-05-01

    Forgoing artificial nutrition and hydration (FANH) in children at the end of life (EOL) is a medically, legally, and ethically acceptable practice under specific circumstances. However, most of the evidence on FANH involves dying adults. There is a paucity of pediatric evidence to guide health care providers' and parents' decision-making around this practice. Objectives were (1) to explore the experiences of bereaved parents when a decision had been made to FANH during EOL care for their child and (2) to describe the perceived quality of death in these children, as reported by their parents. This was a qualitative study using in-depth interviews with parents whose children died after a decision to FANH. Parental perceptions about the experience and their child's quality of death were explored. Interviews were audiotaped and transcribed, then data were analyzed by using interpretive description methodology. All parents were satisfied with their decision to FANH and believed that their child's death was generally peaceful and comfortable. The child's perceived poor quality of life was central to the decision to FANH, with feeding intolerance often contributing to this perception. Despite overall satisfaction, all parents had doubts and questions about the decision and benefited from ongoing assurances from the clinical team. FANH in children at the EOL is an acceptable form of palliation for some parents and may contribute to a death that is perceived to be peaceful and comfortable. In situations in which FANH may be a reasonable possibility, physicians should be prepared to introduce the option.

  11. Distancing sedation in end-of-life care from physician-assisted suicide and euthanasia.

    Science.gov (United States)

    Soh, Tze Ling Gwendoline Beatrice; Krishna, Lalit Kumar Radha; Sim, Shin Wei; Yee, Alethea Chung Peng

    2016-05-01

    Lipuma equates continuous sedation until death (CSD) to physician-assisted suicide/euthanasia (PAS/E) based on the premise that iatrogenic unconsciousness negates social function and, thus, personhood, leaving a patient effectively 'dead'. Others have extrapolated upon this position further, to suggest that any use of sedation and/or opioids at the end of life would be analogous to CSD and thus tantamount to PAS/E. These posits sit diametrically opposite to standard end-of-life care practices. This paper will refute Lipuma's position and the posits borne from it. We first show that prevailing end-of-life care guidelines require proportional and monitored use of sedatives and/or opioids to attenuate fears that the use of such treatment could hasten death. These guidelines also classify CSD as a last resort treatment, employed only when symptoms prove intractable, and not amenable to all standard treatment options. Furthermore, CSD is applied only when deemed appropriate by a multidisciplinary palliative medicine team. We also show that empirical data based on local views of personhood will discount concerns that iatrogenic unconsciousness is tantamount to a loss of personhood and death. Copyright: © Singapore Medical Association.

  12. Distancing sedation in end-of-life care from physician-assisted suicide and euthanasia

    Science.gov (United States)

    Soh, Tze Ling Gwendoline Beatrice; Krishna, Lalit Kumar Radha; Sim, Shin Wei; Yee, Alethea Chung Peng

    2016-01-01

    Lipuma equates continuous sedation until death (CSD) to physician-assisted suicide/euthanasia (PAS/E) based on the premise that iatrogenic unconsciousness negates social function and, thus, personhood, leaving a patient effectively ‘dead’. Others have extrapolated upon this position further, to suggest that any use of sedation and/or opioids at the end of life would be analogous to CSD and thus tantamount to PAS/E. These posits sit diametrically opposite to standard end-of-life care practices. This paper will refute Lipuma’s position and the posits borne from it. We first show that prevailing end-of-life care guidelines require proportional and monitored use of sedatives and/or opioids to attenuate fears that the use of such treatment could hasten death. These guidelines also classify CSD as a last resort treatment, employed only when symptoms prove intractable, and not amenable to all standard treatment options. Furthermore, CSD is applied only when deemed appropriate by a multidisciplinary palliative medicine team. We also show that empirical data based on local views of personhood will discount concerns that iatrogenic unconsciousness is tantamount to a loss of personhood and death. PMID:27211055

  13. Clinical review: Ethics and end-of-life care for critically ill patients in China.

    Science.gov (United States)

    Li, Li Bin

    2013-12-04

    Critical care medicine in China has made great advances in recent decades. This has led to an unavoidable issue: end-of-life ethics. With advances in medical technology and therapeutics allowing the seemingly limitless maintenance of life, the exact time of death of an individual patient is often determined by the decision to limit life support. How to care for patients at the end of life is not only a medical problem but also a social, ethical, and legal issue. A lot of factors, besides culture, come into play in determining a person's ethical attitudes or behaviors, such as experience, education, religion, individual attributes, and economic considerations. Chinese doctors face ethical problems similar to those of their Western counterparts; however, since Chinese society is different from that of Western countries in cultural traditions, customs, religious beliefs, and ethnic backgrounds, there is a great difference between China and the Western world in regard to ethics at the end of life, and there is also a huge controversy within China.

  14. The contributions of family care-givers at end of life : A national post-bereavement census survey of cancer carers' hours of care and expenditures

    NARCIS (Netherlands)

    Rowland, Christine; Hanratty, Barbara; Pilling, Mark; van den Berg, Bernard; Grande, Gunn

    Background: Family members provide vital care at end of life, enabling patients to remain at home. Such informal care contributes significantly to the economy while supporting patients' preferences and government policy. However, the value of care-givers' contributions is often underestimated or

  15. Matters of spirituality at the end of life in the pediatric intensive care unit.

    Science.gov (United States)

    Robinson, Mary R; Thiel, Mary Martha; Backus, Meghan M; Meyer, Elaine C

    2006-09-01

    Our objective with this study was to identify the nature and the role of spirituality from the parents' perspective at the end of life in the PICU and to discern clinical implications. A qualitative study based on parental responses to open-ended questions on anonymous, self-administered questionnaires was conducted at 3 PICUs in Boston, Massachusetts. Fifty-six parents whose children had died in PICUs after the withdrawal of life-sustaining therapies participated. Overall, spiritual/religious themes were included in the responses of 73% (41 of 56) of parents to questions about what had been most helpful to them and what advice they would offer to others at the end of life. Four explicitly spiritual/religious themes emerged: prayer, faith, access to and care from clergy, and belief in the transcendent quality of the parent-child relationship that endures beyond death. Parents also identified several implicitly spiritual/religious themes, including insight and wisdom; reliance on values; and virtues such as hope, trust, and love. Many parents drew on and relied on their spirituality to guide them in end-of-life decision-making, to make meaning of the loss, and to sustain them emotionally. Despite the dominance of technology and medical discourse in the ICU, many parents experienced their child's end of life as a spiritual journey. Staff members, hospital chaplains, and community clergy are encouraged to be explicit in their hospitality to parents' spirituality and religious faith, to foster a culture of acceptance and integration of spiritual perspectives, and to work collaboratively to deliver spiritual care.

  16. Positioning end-of-life care education within the pre-registration therapeutic radiography curriculum: A survey of current practices amongst UK higher education institutions

    International Nuclear Information System (INIS)

    White, N.

    2017-01-01

    Aim: It is essential that all health professionals who come into contact with patients with terminal diagnoses are equipped to effectively and competently provide end of life care. This study aims to investigate the manner in which Higher Education Institutions address this requirement with their programmes of pre-registration therapeutic radiography education. Method: A structured survey was administered electronically to all UK universities with responsibility for therapeutic radiography education. The scope of the survey addressed mode and duration of end of life care education, its location, curricular assessment, identifiable barriers and best practice. Results: All respondents confirmed the presence of dedicated end of life care education within their curriculum. Variation in the duration and location of this education is reported as are approaches to assessment of associated skills and knowledge. Analysis of respondent commentary has identified three themes-preparedness for the clinical role, dissonance between technology and care, and holistic approaches to course design. Conclusion: Respondents have highlighted the importance of end of life care instruction with their programmes of study and identified aspects of the mode and duration of its delivery. Inclusion of this aspect of study may be problematic in the face of competing demands arising from the volume and complexity of the curriculum. Practical experience of end of life care predominantly occurs within the radiotherapy department, although there is scope to explore opportunities within the hospice and community care setting. - Highlights: • Effective end of life care training within radiotherapy radiography programmes is necessary. • Universities confirm the inclusion of end of life care training in their curriculum. • Variations in contact time and mode of delivery are reported. • The majority of end of life care practice experience is gained within the radiotherapy department. • Wider

  17. Initial development and psychometric testing of an instrument to measure the quality of children's end-of-life care.

    Science.gov (United States)

    Widger, Kimberley; Tourangeau, Ann E; Steele, Rose; Streiner, David L

    2015-01-01

    The field of pediatric palliative care is hindered by the lack of a well-defined, reliable, and valid method for measuring the quality of end-of-life care. The study purpose was to develop and test an instrument to measure mothers' perspectives on the quality of care received before, at the time of, and following a child's death. In Phase 1, key components of quality end-of-life care for children were synthesized through a comprehensive review of research literature. These key components were validated in Phase 2 and then extended through focus groups with bereaved parents. In Phase 3, items were developed to assess structures, processes, and outcomes of quality end-of-life care then tested for content and face validity with health professionals. Cognitive testing was conducted through interviews with bereaved parents. In Phase 4, bereaved mothers were recruited through 10 children's hospitals/hospices in Canada to complete the instrument, and psychometric testing was conducted. Following review of 67 manuscripts and 3 focus groups with 10 parents, 141 items were initially developed. The overall content validity index for these items was 0.84 as rated by 7 health professionals. Based on feedback from health professionals and cognitive testing with 6 parents, a 144-item instrument was finalized for further testing. In Phase 4, 128 mothers completed the instrument, 31 of whom completed it twice. Test-retest reliability, internal consistency, and construct validity were demonstrated for six subscales: Connect With Families, Involve Parents, Share Information With Parents, Share Information Among Health Professionals, Support Parents, and Provide Care at Death. Additional items with content validity were grouped in four domains: Support the Child, Support Siblings, Provide Bereavement Follow-up, and Structures of Care. Forty-eight items were deleted through psychometric testing, leaving a 95-item instrument. There is good initial evidence for the reliability and

  18. End-of-life care for advanced dementia patients in residential care home-a Hong Kong perspective.

    Science.gov (United States)

    Luk, James K H; Chan, Felix H W

    2017-08-28

    Dementia will become more common as the population ages. Advanced dementia should be considered as a terminal illnesses and end-of-life (EOL) care is very much needed for this disease group. Currently, the EOL services provided to this vulnerable group in Hong Kong, especially those living in residential care homes, is limited. The usual practice of residential care homes is to send older residents with advanced dementia to acute hospitals when they are sick, irrespective of their wish, premorbid status, diagnoses and prognosis. This may not accord with what the patients perceive to be a "good death". There are many barriers for older people to die in place, both at home and at the residential care home. In the community, to enhance EOL care to residential care home for the elderly (RCHE) residents, pilot EOL program had been carried out by some Community Geriatric Assessment Teams. Since 2015, the Hospital Authority funded program "Enhance Community Geriatric Assessment Team Support to End-of-life Patients in Residential Care Homes for the Elderly" has been started. In the program, advance care planning (ACP), Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) (non-hospitalized) order will be established and the program will be expected to cover all clusters in Hong Kong by 2018/2019. In hospital setting, EOL clinical plan and EOL ward in geriatric step-down hospitals may be able to improve the quality of death of older patients. In Sep 2015, the Hospital Authority Guidelines on Life-Sustaining Treatment in the Terminally Ill was updated. Amongst other key EOL issues, careful (comfort) hand feeding was mentioned in the guideline. Other new developments include the possible establishment of enduring power of attorney for health care decision and enhancement of careful hand feeding amongst advanced dementia patients in RCHEs.

  19. Parental Physical Proximity in End-of-Life Care in the PICU.

    Science.gov (United States)

    Falkenburg, Jeannette L; Tibboel, Dick; Ganzevoort, Ruard R; Gischler, Saskia; Hagoort, Jacobus; van Dijk, Monique

    2016-05-01

    Health professionals in PICUs support both child and parents when a child's death is imminent. Parents long to stay connected to their dying child but the high-tech environment and treatment implications make it difficult to stay physically close. This study explores in what sense physical aspects of end-of-life care in the PICU influence the parent-child relationship. Retrospective, qualitative interview study. Level 3 PICU in Erasmus Medical Center in the Netherlands. Thirty-six parents of 20 children who had died in this unit 5 years previously. Parents vividly remembered the damage done to the child's physical appearance, an inevitable consequence of medical treatment. They felt frustrated and hurt when they could not hold their child. Yet they felt comforted if facilitated to be physically close to the dying child, like lying with the child in one bed, holding the child in the hour of death, and washing the child after death. End-of-life treatment in the PICU presents both a barrier and an opportunity for parents to stay physically connected to their child. Parents' experiences suggest that aspects of physicality in medical settings deserve more attention. Better understanding of the significance of bodily aspects-other than pain and symptom management-improves end-of-life support and should be part of the humane approach to families.

  20. Managing Bias in Palliative Care: Professional Hazards in Goals of Care Discussions at the End of Life.

    Science.gov (United States)

    Callaghan, Katharine A; Fanning, Joseph B

    2018-02-01

    In the setting of end-of-life care, biases can interfere with patient articulation of goals and hinder provision of patient-centered care. No studies have addressed clinician bias or bias management specific to goals of care discussions at the end of life. To identify and determine the prevalence of palliative care clinician biases and bias management strategies in end-of-life goals of care discussions. A semistructured interview guide with relevant domains was developed to facilitate data collection. Participants were asked directly to identify biases and bias management strategies applicable to this setting. Two researchers developed a codebook to identify themes using a 25% transcript sample through an iterative process based on grounded theory. Inter-rater reliability was evaluated using Cohen κ. It was 0.83, indicating near perfect agreement between coders. The data approach saturation. A purposive sampling of 20 palliative care clinicians in Middle Tennessee participated in interviews. The 20 clinicians interviewed identified 16 biases and 11 bias management strategies. The most frequently mentioned bias was a bias against aggressive treatment (n = 9), described as a clinician's assumption that most interventions at the end of life are not beneficial. The most frequently mentioned bias management strategy was self-recognition of bias (n = 17), described as acknowledging that bias is present. This is the first study identifying palliative care clinicians' biases and bias management strategies in end-of-life goals of care discussions.

  1. Simulation-based end-of-life care training during surgical clerkship: assessment of skills and perceptions.

    Science.gov (United States)

    Parikh, Priti P; Brown, Ronald; White, Mary; Markert, Ronald J; Eustace, Rosemary; Tchorz, Kathryn

    2015-06-15

    Assessment of interpersonal and psychosocial competencies during end-of-life care training is essential. This study reports the relationship between simulation-based end-of-life care Objective Structured Clinical Examination ratings and communication skills, trust, and self-assessed empathy along with the perceptions of students regarding their training experiences. Medical students underwent simulation-based end-of-life care OSCE training that involved standardized patients who evaluated students' communication skills and physician trust with the Kalamazoo Essential Elements Communication Checklist and the Wake Forest Physician Trust Scale. Students also completed the Jefferson Scale of Physician Empathy. Pearson correlation was used to examine the relationship between OSCE performance grades and communication, trust, and empathy scores. Student comments were analyzed using the constant comparative method of analysis to identify dominant themes. The 389 students (mean age 26.6 ± 2.8 y; 54.5% female) had OSCE grades that were positively correlated with physician trust scores (r = 0.325, P training to be a valuable learning experience and appreciated its placement early in clinical training. We found that simulation-based OSCE training in palliative and end-of-life care can be effectively conducted during a surgery clerkship. Moreover, the standardized patient encounters combined with the formal assessment of communication skills, physician trust, and empathy provide feedback to students at an early phase of their professional life. The positive and appreciative comments of students regarding the opportunity to practice difficult patient conversations suggest that attention to these professional characteristics and skills is a valued element of clinical training and conceivably a step toward better patient outcomes and satisfaction. Copyright © 2015 Elsevier Inc. All rights reserved.

  2. Family's difficulty scale in end-of-life home care: a new measure of the family's difficulties in caring for patients with cancer at the end of life at home from bereaved family's perspective.

    Science.gov (United States)

    Ishii, Yoko; Miyashita, Mitsunori; Sato, Kazuki; Ozawa, Taketoshi

    2012-02-01

    The aim of this study was to develop a tool to measure the family's difficulties in caring for cancer patients at the end of life at home: Family's Difficulty Scale in end-of-life home care (FDS). The draft of the FDS was derived from a pilot interview survey and literature reviews. The questionnaires were sent to 395 bereaved family caregivers whose family members were patients with terminal cancer receiving home service. We obtained 306 responses (response rate, 81%). Factor analysis resulted in 29 items and 8 factors: Burden of Care, Concerns about Home Care Doctor, Balance of Work and Care, Patient's Pain and Condition, Concerns about Visiting Nurse, Concerns about Home Care Service, Relationship between Family Caregivers and their Families, and Funeral Preparations. The cumulative rate of contribution was 71.8%. Cronbach coefficient α for the FDS was 0.73-0.75; the intraclass correlation coefficient in the test-retest examination was 0.75-0.85. Evidence for construct validity was confirmed by convergent and divergent validity. Concurrent validity was confirmed by significant correlations between identified factors and concurrent measures. The validity and reliability of this new instrument were confirmed. This scale should help home care providers to assess and focus on family difficulties and provide individualized care for the family who cares for a patient with terminal cancer at home.

  3. Palliative and end of life care communication as emerging priorities in postgraduate medical education

    Science.gov (United States)

    Roze des Ordons, Amanda; Ajjawi, Rola; Macdonald, John; Sarti, Aimee; Lockyer, Jocelyn; Hartwick, Michael

    2016-01-01

    Background Reliance on surveys and qualitative studies of trainees to guide postgraduate education about palliative and end of life (EOL) communication may lead to gaps in the curriculum. We aimed to develop a deeper understanding of internal medicine trainees’ educational needs for a palliative and EOL communication curriculum and how these needs could be met. Methods Mixed methods, including a survey and focus groups with trainees, and interviews with clinical faculty and medical educators, were applied to develop a broader perspective on current experiences and needs for further education. Quantitative descriptive and thematic analyses were conducted. Results Surveyed trainees were least confident and least satisfied with teaching in counseling about the emotional impact of emergencies and discussing organ donation. Direct observation with feedback, small group discussion, and viewing videos of personal consultations were perceived as effective, yet infrequently identified as instructional methods. Focus groups and interviews identified goals of care conversations as the highest educational priority, with education adapted to learner needs and accompanied by feedback and concurrent clinical and organizational support. Conclusions Our work expands on previous research describing needs for postgraduate education in palliative and EOL communication to include the importance of support, culture change, and faculty development, and provides insight into why such needs exist. PMID:27103952

  4. Palliative Care and the Humanities: Centralizing the Patient at the End of Life.

    Science.gov (United States)

    Franke, Richard J

    2016-03-01

    Palliative care is a quickly growing facet of modern medicine. While scientific advancements have broken new ground for the possibilities of end-of-life care, sensitive treatment of the patient as an individual has lagged behind and has frequently led to an unsatisfactory experience for patients, families, and the medical community at large. This essay argues that centralizing patients during the terminal phases of treatment by using humanistic perspectives has the potential to bring new meaning and improved effectiveness to patients and physicians alike.

  5. End-of-life costs of medical care for advanced stage cancer patients

    Directory of Open Access Journals (Sweden)

    Kovačević Aleksandra

    2015-01-01

    Full Text Available Background/Aim. Cancer, one of the leading causes of mortality in the world, imposes a substantial economic burden on each society, including Serbia. The aim of this study was to evaluate the major cancer cost drivers in Serbia. Methods. A retrospective, indepth, bottom-up analysis of two combined databases was performed in order to quantify relevant costs. End-of-life data were obtained from patients with cancer, who deceased within the first year of the established diagnose, including basic demographics, diagnosis, tumour histology, medical resource use and related costs, time and cause of death. All costs were allocated to one of the three categories of cancer health care services: primary care (included home care, hospital outpatient and hospital inpatient care. Results. Exactly 114 patients were analyzed, out of whom a high percent (48.25% had distant metastases at the moment of establishing the diagnosis. Malignant neoplasms of respiratory and intrathoracic organs were leading causes of morbidity. The average costs per patient were significantly different according to the diagnosis, with the highest (13,114.10 EUR and the lowest (4.00 EUR ones observed in the breast cancer and melanoma, respectively. The greatest impact on total costs was observed concerning pharmaceuticals, with 42% of share (monoclonal antibodies amounted to 34% of all medicines and 14% of total costs, followed by oncology medical care (21%, radiation therapy and interventional radiology (11%, surgery (9%, imaging diagnostics (9% and laboratory costs (8%. Conclusion. Cancer treatment incurs high costs, especially for end-of-life pharmaceutical expenses, ensued from medical personnel tendency to improve such patients’ quality of life in spite of nearing the end of life. Reimbursement policy on monoclonal antibodies, in particular at end-stage disease, should rely on cost-effectiveness evidence as well as documented clinical efficiency. [Projekat Ministarstva nauke

  6. Hardships of end-of-life care with court-appointed guardians.

    Science.gov (United States)

    Hastings, Kylie B

    2014-02-01

    In the United States, the court-appointed guardians do not have the ability to make decisions regarding end-of-life (EOL) care for their clients. Additionally, the process of initiating EOL care measures can be slow and cumbersome, despite an existing process of getting approval for such care. This process has the potential to prolong suffering and delay imperative decisions. This article reviews the hardships that patients, court-appointed guardians, and health care staff endure while moving through the oppressive process of obtaining EOL care orders through the court. This article also proposes ways of tuning up the laws, regulations, and communications to make it easier and faster to obtain orders regarding EOL care to preserve the dignity of our patients and loved ones. "A guardianship is a legal relationship created when a person or institution named in a will or assigned by the court to take care of minor children or incompetent adults."

  7. Doctors' learning experiences in end-of-life care - a focus group study from nursing homes.

    Science.gov (United States)

    Fosse, Anette; Ruths, Sabine; Malterud, Kirsti; Schaufel, Margrethe Aase

    2017-01-31

    Doctors often find dialogues about death difficult. In Norway, 45% of deaths take place in nursing homes. Newly qualified medical doctors serve as house officers in nursing homes during internship. Little is known about how nursing homes can become useful sites for learning about end-of-life care. The aim of this study was to explore newly qualified doctors' learning experiences with end-of-life care in nursing homes, especially focusing on dialogues about death. House officers in nursing homes (n = 16) participated in three focus group interviews. Interviews were audiotaped and transcribed verbatim. Data were analysed with systematic text condensation. Lave & Wenger's theory about situated learning was used to support interpretations, focusing on how the newly qualified doctors gained knowledge of end-of-life care through participation in the nursing home's community of practice. Newly qualified doctors explained how nursing home staff's attitudes taught them how calmness and acceptance could be more appropriate than heroic action when death was imminent. Shifting focus from disease treatment to symptom relief was demanding, yet participants comprehended situations where death could even be welcomed. Through challenging dialogues dealing with family members' hope and trust, they learnt how to adjust words and decisions according to family and patient's life story. Interdisciplinary role models helped them balance uncertainty and competence in the intermediate position of being in charge while also needing surveillance. There is a considerable potential for training doctors in EOL care in nursing homes, which can be developed and integrated in medical education. This practice based learning arena offers newly qualified doctors close interaction with patients, relatives and nurses, teaching them to perform difficult dialogues, individualize medical decisions and balance their professional role in an interdisciplinary setting.

  8. End of life care in sub-Saharan Africa: a systematic review of the qualitative literature

    Directory of Open Access Journals (Sweden)

    Pool Robert

    2011-03-01

    Full Text Available Abstract Background End of life (EoL care in sub-Saharan Africa still lacks the sound evidence-base needed for the development of effective, appropriate service provision. It is essential to make evidence from all types of research available alongside clinical and health service data, to ensure that EoL care is ethical and culturally appropriate. This article aims to synthesize qualitative research on EoL care in sub-Saharan Africa to inform policy, practice and further research. It seeks to identify areas of existing research; describe findings specifically relevant to the African context; and, identify areas lacking evidence. Methods Relevant literature was identified through eight electronic databases: AMED, British Nursing Index & Archive, CINAHL, EMBASE, IBSS, MEDLINE, PsycINFO, and the Social Sciences Citation Index; and hand searches. Inclusion criteria were: published qualitative or mixed-method studies in sub-Saharan Africa, about EoL care. Study quality was assessed using a standard grading scale. Relevant data including findings and practice recommendations were extracted and compared in tabular format. Results Of the 407 articles initially identified, 51 were included in the qualitative synthesis. Nineteen came from South Africa and the majority (38 focused on HIV/AIDS. Nine dealt with multiple or unspecified conditions and four were about cancer. Study respondents included health professionals, informal carers, patients, community members and bereaved relatives. Informal carers were typically women, the elderly and children, providing total care in the home, and lacking support from professionals or the extended family. Twenty studies focused on home-based care, describing how programmes function in practice and what is needed to make them effective. Patients and carers were reported to prefer institutional care but this needs to be understood in context. Studies focusing on culture discussed good and bad death, culture

  9. Theories of Health Care Decision Making at the End of Life: A Meta-Ethnography.

    Science.gov (United States)

    Kim, Kyounghae; Heinze, Katherine; Xu, Jiayun; Kurtz, Melissa; Park, Hyunjeong; Foradori, Megan; Nolan, Marie T

    2017-08-01

    The aim of this meta-ethnography is to appraise the types and uses of theories relative to end-of-life decision making and to develop a conceptual framework to describe end-of-life decision making among patients with advanced cancers, heart failure, and amyotrophic lateral sclerosis (ALS) and their caregivers or providers. We used PubMed, Embase, and Cumulative Index to Nursing and Allied Health Literature (CINAHL) databases to extract English-language articles published between January 2002 and April 2015. Forty-three articles were included. The most common theories included decision-making models ( n = 14) followed by family-centered ( n = 11) and behavioral change models ( n = 7). A conceptual framework was developed using themes including context of decision making, communication and negotiation of decision making, characteristics of decision makers, goals of decision making, options and alternatives, and outcomes. Future research should enhance and apply these theories to guide research to develop patient-centered decision-making programs that facilitate informed and shared decision making at the end of life among patients with advanced illness and their caregivers.

  10. Discussing Death, Dying, and End-of-Life Goals of Care: A Communication Skills Training Module for Oncology Nurses.

    Science.gov (United States)

    Coyle, Nessa; Manna, Ruth; Shen, Megan; Banerjee, Smita C; Penn, Stacey; Pehrson, Cassandra; Krueger, Carol A; Maloney, Erin K; Zaider, Talia; Bylund, Carma L

    2015-12-01

    Effective communication, particularly at the end of life, is an essential skill for oncology nurses, but few receive formal training in this area. The aim of this article is to adapt an end-of-life care communication skills training (CST) module, originally developed for oncologists, for oncology nurses and to evaluate participants' confidence in using the communication skills learned and their satisfaction with the module. The adapted end-of-life care module consisted of a 45-minute didactic, exemplary video and 90 minutes of small group interaction and experiential role play with a simulated patient. Using a five-point Likert-type scale, 247 inpatient oncology nurses completed pre-/post-workshop surveys rating their confidence in discussing death, dying, and end-of-life goals of care with patients, as well as overall satisfaction with the module. Nurses' confidence in discussing death, dying, and end-of-life goals of care increased significantly after attending the workshop. Nurse participants indicated satisfaction with the module by agreeing or strongly agreeing to all six items assessing satisfaction 90%-98% of the time. Nurses' CST in discussing death, dying, and end-of-life care showed feasibility, acceptability, and potential benefit at improving confidence in having end-of-life care discussions.

  11. Fighting for Dear Life: Christians and Aggressive End-of-Life Care.

    Science.gov (United States)

    Shinall, Myrick C

    2014-01-01

    Patients or their family members sometimes give religious reasons for requesting life-sustaining technologies that have little hope of restoring health. This poses an ethical challenge for clinicians and a potential strain on limited health-care resources. Among Christians, one explanation for a preference for aggressive, life-prolonging care is the influence of the idea of martyrdom, which became the normative form of dying in early Christianity. The ancient discourse of martyrdom and the modern discourse of aggressive medical care both share a martial orientation and commend an ethos of combat. This paper examines ancient Christian martyrdom discourse to illuminate its affinity with the discourse of aggressive medical care. The ethos of martyrdom has shaped Christian attitudes toward death such that preference for aggressive medical care at the end of life is understandable.

  12. Perspectives of family members on planning end-of-life care for terminally ill and frail older people.

    Science.gov (United States)

    van Eechoud, Ineke J; Piers, Ruth D; Van Camp, Sigrid; Grypdonck, Mieke; Van Den Noortgate, Nele J; Deveugele, Myriam; Verbeke, Natacha C; Verhaeghe, Sofie

    2014-05-01

    Advance care planning (ACP) is the process by which patients, together with their physician and loved ones, establish preferences for future care. Because previous research has shown that relatives play a considerable role in end-of-life care decisions, it is important to understand how family members are involved in this process. To gain understanding of the involvement of family members in ACP for older people near the end of life by exploring their views and experiences concerning this process. This was a qualitative research study, done with semistructured interviews. Twenty-one family members were recruited from three geriatric settings in Flanders, Belgium. The data were analyzed using the constant comparative method as proposed by the grounded theory. Family members took different positions in the ACP process depending on how much responsibility the family member wanted to take and to what extent the family member felt the patient expected him/her to play a part. The position of family members on these two dimensions was influenced by several factors, namely acknowledgment of the imminent death, experiences with death and dying, opinion about the benefits of ACP, burden of initiating conversations about death and dying, and trust in health care providers. Furthermore, the role of family members in ACP was embedded in the existing relationship patterns. This study provides insight into the different positions of family members in the end-of-life care planning of older patients with a short life expectancy. It is important for health care providers to understand the position of a family member in the ACP of the patient, take into account that family members may experience an active role in ACP as burdensome, and consider existing relationship patterns. Copyright © 2014 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

  13. Paramedic knowledge, attitudes, and training in end-of-life care.

    Science.gov (United States)

    Stone, Susan C; Abbott, Jean; McClung, Christian D; Colwell, Chris B; Eckstein, Marc; Lowenstein, Steven R

    2009-01-01

    Paramedics often are asked to care for patients at the end of life. To do this, they must communicate effectively with family and caregivers, understand their legal obligations, and know when to withhold unwanted interventions. The objectives of this study were to ascertain paramedics' attitudes toward end-of-life (EOL) situations and the frequency with which they encounter them; and to compare paramedics' preparation during training for a variety of EOL care skills. A written survey was administered to a convenience sample of paramedics in two cities: Denver, Colorado and Los Angeles, California. Questions addressed: (1) attitudes toward EOL decision-making in prehospital settings; (2) experience (number of EOL situations experienced in the past two years); (3) importance of various EOL tasks in clinical practice (pronouncing and communicating death, ending resuscitation, honoring advance directives (ADs)); and (4) self-assessed preparation for these EOL tasks. For each task, importance and preparation were measured using a four-point Likert scale. Proportions were compared using McNemar chi-square statistics to identify areas of under- or over-preparation. Two hundred thirty-six paramedics completed the survey. The mean age was 39 years (range 22-59 years), and 222 (94%) were male. Twenty percent had >20 years of experience. Almost all participants (95%; 95% CI = 91-97%) agreed that prehospital providers should honor field ADs, and more than half (59%; 95% CI = 52-65%) felt that providers should honor verbal wishes to limit resuscitation at the scene. Ninety-eight percent of the participants (95% CI = 96-100%) had questioned whether specific life support interventions were appropriate for patients who appeared to have a terminal disease. Twenty-six percent (95% CI = 20-32%) reported to have used their own judgment during the past two years to withhold or end resuscitation in a patient who appeared to have a terminal disease. Significant discrepancies between the

  14. Current and emerging practice of end-of-life care in British prisons: findings from an online survey of prison nurses.

    Science.gov (United States)

    Papadopoulos, Irena; Lay, Margaret

    2016-03-01

    There are concerns about prisoners and detainees not having equal access to end-of-life care while in prison. There is a lack of existing literature about the standards of end-of-life care in UK prisons. The aim of this study was to investigate the views of current and former prison nurses with regard to the end-of-life care being provided in UK prisons. Prison nurses were invited to participate in an online survey and asked about their role in the prison, prisoners' access to healthcare facilities, and any barriers and good practices to end-of-life care. The survey included open-ended and closed questions. The closed questions were analysed using descriptive statistics. The open-ended responses were coded and grouped into themes. 31 (N=31) prison nurses responded to the survey. The reported barriers to end-of-life care included some prison regimes, lack of appropriate care and visiting facilities, lack of privacy and inadequate visiting hours. Respondents also reported examples of good practice, including having access to specialist palliative care and specialist equipment, and being able to receive visits from family and friends. The findings suggest that there is considerable variability in the end-of-life care provided to prisoners in the UK. Further research is needed in order to reduce the health inequalities and improve the quality of end-of-life care experienced by prisoners in the UK. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/

  15. Communication skills training for dialysis decision-making and end-of-life care in nephrology.

    Science.gov (United States)

    Schell, Jane O; Green, Jamie A; Tulsky, James A; Arnold, Robert M

    2013-04-01

    Nephrology fellows often face difficult conversations about dialysis initiation or withdrawal but are frequently unprepared for these discussions. Despite evidence that communication skills are teachable, few fellowship programs include such training. A communication skills workshop for nephrology fellows (NephroTalk) focused on delivering bad news and helping patients define care goals, including end-of-life preferences. This 4-hour workshop, held in October and November 2011, included didactics and practice sessions with standardized patients. Participants were nephrology fellows at Duke University and the University of Pittsburgh (n=22). Pre- and post-workshop surveys evaluated efficacy of the curriculum and measured changes in perceived preparedness on the basis on workshop training. Overall, 14% of fellows were white and 50% were male. Less than one-third (6 of 22) reported prior palliative care training. Survey response rate varied between 86% and 100%. Only 36% (8 of 22) and 38% (8 of 21) of respondents had received structured training in discussions for dialysis initiation or withdrawal. Respondents (19 of 19) felt that communication skills were important to being a "great nephrologist." Mean level of preparedness as measured with a five-point Likert scale significantly increased for all skills (range, 0.5-1.14; Pdecision-making and end-of-life care.

  16. Palliative and End-of-Life Care for Lesbian, Gay, Bisexual, and Transgender (LGBT) Cancer Patients and Their Caregivers.

    Science.gov (United States)

    Cloyes, Kristin G; Hull, William; Davis, Andra

    2018-02-01

    To identify the unique needs of lesbian, gay, bisexual, and transgender (LGBT) cancer patients and caregivers, and review recommendations supporting more effective and inclusive palliative and end-of-life care. Published research and clinical guidelines. Transitions in care raise particular challenges for LGBT patients, including provider communication, perceptions of safety and acceptance, and assessing and respecting patients' definitions of family and spirituality. LGBT patients and their caregivers need competent nurses to support them, especially during transitions. Implementing LGBT-inclusive education, training, and practice will improve outcomes for LGBT cancer patients and their caregivers - and potentially all patients. Copyright © 2017 Elsevier Inc. All rights reserved.

  17. Equality for followers of South Asian religions in end-of-life care.

    Science.gov (United States)

    Samanta, Jo

    2013-06-01

    Significant minority populations confer richness and diversity to British society. Responsive end-of-life care is a universal need that has ascended the public agenda following myriad reports of inadequate provision. Nevertheless, the potential exists for unwitting discrimination when caring for terminally ill patients on the basis of their religion or faith. Recent implementation of the Equality Act 2010, together with the government and professional initiatives, promises to positively impact upon this area of contemporary relevance and concern, although the extent to which facilitative policies can truly enhance patient care will depend upon how these are translated into care at the bedside. The contributions of health professionals will be central in meeting the challenges and seizing the opportunities for meeting the religion and faith interests of patients of South Asian descent.

  18. Classroom-based and distance learning education and training courses in end-of-life care for health and social care staff: a systematic review.

    Science.gov (United States)

    Pulsford, David; Jackson, Georgina; O'Brien, Terri; Yates, Sue; Duxbury, Joy

    2013-03-01

    Staff from a range of health and social care professions report deficits in their knowledge and skills when providing end-of-life and palliative care, and education and training has been advocated at a range of levels. To review the literature related to classroom-based and distance learning education and training initiatives for health and social care staff in end-of-life and palliative care, in terms of their target audience, extent, modes of delivery, content and teaching and learning strategies, and to identify the most effective educational strategies for enhancing care. A systematic review of the literature evaluating classroom-based and distance learning education and training courses for health and social care staff in end-of-life and palliative care. Online databases CINAHL, MEDLINE, EMBASE and PSYCHINFO between January 2000 and July 2010. Studies were selected that discussed specific education and training initiatives and included pre-and post-test evaluation of participants' learning. 30 studies met eligibility criteria. The majority reported successful outcomes, though there were some exceptions. Level of prior experience and availability of practice reinforcement influenced learning. Participative and interactive learning strategies were predominantly used along with discussion of case scenarios. Multi-professional learning was infrequently reported and service user and carer input to curriculum development and delivery was reported in only one study. Classroom-based education and training is useful for enhancing professionals' skills and perceived preparedness for delivering end-of-life care but should be reinforced by actual practice experience.

  19. Defining dignity in end-of-life care in the emergency department.

    Science.gov (United States)

    Fernández-Sola, Cayetano; Cortés, María Mar Díaz; Hernández-Padilla, José Manuel; Torres, Cayetano José Aranda; Terrón, José María Muñoz; Granero-Molina, José

    2017-02-01

    Respecting dignity is having a profound effect on the clinical relationship and the care framework for terminally ill patients in palliative care units, hospices and their own homes, with particular consequences for the emergency department. However, dignity is a vague and multifaceted concept that is difficult to measure. The aim of this study is to define the attributes of dignity in end-of-life care in the emergency department, based on the opinions of physicians and nurses. A hermeneutic phenomenological approach utilising Gadamer's philosophical underpinnings guided the study. Participants and research context: This research was conducted in Spain in 2013-2014. Participants included 10 physicians and 16 nurses with experience working in the emergency department. Two focus groups and 12 in-depth interviews were carried out. Ethical considerations: The study was approved by the Research Centre Ethical Committee (Andalusian Health Service, Spain). The results point to the person's inherent value, socio-environmental conditions and conscious actions/attitudes as attributes of dignity when caring for a dying patient in the emergency department. Dying with dignity is a basic objective in end-of-life care and is an ambiguous but relevant concept for physicians and nurses. In line with our theoretical framework, our results highlight care environment, professional actions and socio-family context as attributes of dignity. Quality care in the emergency department includes paying attention to the dignity of people in the process of death. The dignity in the care of a dying person in the emergency department is defined by acknowledging the inherent value in each person, socio-environmental conditions and social and individual acceptance of death. Addressing these questions has significant repercussions for health professionals, especially nurses.

  20. Protocolised approach to end-of-life care in the ICU--the ICU PALCare Pilot Project.

    Science.gov (United States)

    Rajamani, A; Barrett, E; Weisbrodt, L; Bourne, J; Palejs, P; Gresham, R; Huang, S

    2015-05-01

    International literature on end-of-life care in intensive care units (ICUs) supports the use of 'protocol bundles', which is not common practice in our 18-bed adult general ICU in Sydney, New South Wales. We conducted a prospective observational study to identify problems related to end-of-life care practices and to determine whether there was a need to develop protocol bundles. Any ICU patient who had 'withdrawal' of life-sustaining treatment to facilitate a comfortable death was eligible. Exclusion criteria included organ donors, unsuitable family dynamics and lack of availability of research staff to obtain family consent. Process-of-care measures were collected using a standardised form. Satisfaction ratings were obtained using de-identified questionnaire surveys given to the healthcare staff shortly after the withdrawal of therapy and to the families 30 days later. Twenty-three patients were enrolled between June 2011 and July 2012. Survey questionnaires were given to 25 family members and 30 healthcare staff, with a high completion rate (24 family members [96%] and 28 staff [93.3%]). Problems identified included poor documentation of family meetings (39%) and symptom management. Emotional/spiritual support was not offered to families (39.1%) or ICU staff (0%). The overall level of end-of-life care was good. The overwhelming majority of families and healthcare staff were highly satisfied with the care provided. Problems identified related to communication documentation and lack of spiritual/emotional support. To address these problems, targeted measures would be more useful than the adoption of protocol bundles. Alternate models of satisfaction surveys may be needed.

  1. Developing the science of end-of-life and palliative care research: National Institute of Nursing Research summit.

    Science.gov (United States)

    Csikai, Ellen L

    2011-01-01

    A rare opportunity to examine accomplishments and identify ways to advance research in end-of-life and palliative care was offered by the National Institute of Nursing Research (NINR) through a summit meeting held in August 2011. The Science of Compassion: Future Directions in End-of-Life and Palliative Care brought together nationally recognized leaders in end-of-life and palliative care research, including grantees of NINR, as well as more than 700 attendees from all disciplines. It was an exciting affirmation of the importance of moving forward in the field. Presented in this article is a summary of the summit and a call to action for end-of-life and palliative care social workers to engage in seeking funding to conduct needed research and to ensure our unique perspective is represented.

  2. Rural end-of-life care from the experiences and perspectives of patients and family caregivers: A systematic literature review.

    Science.gov (United States)

    Rainsford, Suzanne; MacLeod, Roderick D; Glasgow, Nicholas J; Phillips, Christine B; Wiles, Robert B; Wilson, Donna M

    2017-12-01

    End-of-life care must be relevant to the dying person and their family caregiver regardless of where they live. Rural areas are distinct and need special consideration. Gaining end-of-life care experiences and perspectives of rural patients and their family caregivers is needed to ensure optimal rural care. To describe end-of-life care experiences and perspectives of rural patients and their family caregivers, to identify facilitators and barriers to receiving end-of-life care in rural/remote settings and to describe the influence of rural place and culture on end-of-life care experiences. A systematic literature review utilising the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Four databases (PubMed, CINAHL, Scopus and Web of Science) were searched in January 2016, using a date filter of January 2006 through January 2016; handsearching of included article references and six relevant journals; one author contacted; pre-defined search terms and inclusion criteria; and quality assessment by at least two authors. A total of 27 articles (22 rural/remote studies) from developed and developing countries were included, reporting rural end-of-life care experiences and perspectives of patients and family caregivers. Greatest needs were informational (developed countries) and medications (developing countries). Influence of rural location included distances, inaccessibility to end-of-life care services, strong community support and importance of home and 'country'. Articulation of the rural voice is increasing; however, there still remain limited published rural studies reporting on patient and family caregivers' experiences and perspectives on rural end-of-life care. Further research is encouraged, especially through national and international collaborative work.

  3. A Model for Art Therapy-Based Supervision for End-of-Life Care Workers in Hong Kong.

    Science.gov (United States)

    Potash, Jordan S; Chan, Faye; Ho, Andy H Y; Wang, Xiao Lu; Cheng, Carol

    2015-01-01

    End-of-life care workers and volunteers are particularly prone to burnout given the intense emotional and existential nature of their work. Supervision is one important way to provide adequate support that focuses on both professional and personal competencies. The inclusion of art therapy principles and practices within supervision further creates a dynamic platform for sustained self-reflection. A 6-week art therapy-based supervision group provided opportunities for developing emotional awareness, recognizing professional strengths, securing collegial relationships, and reflecting on death-related memories. The structure, rationale, and feedback are discussed.

  4. End-of-Life Transitions and Hospice Utilization for Adolescents: Does Having a Usual Source of Care Matter?

    Science.gov (United States)

    Keim-Malpass, Jessica; Lindley, Lisa C

    2017-08-01

    Adolescents with life-limiting illnesses have intensive end-of-life trajectories and could benefit from initiation of hospice services. The medical home model, which includes having a usual source of primary care, may help facilitate quality outcomes at the end-of-life for adolescents. The purpose of this study was to determine the relationship between having a usual source of primary care on hospice utilization and end-of-life transitions among adolescents between 15-20 years with a life-limiting illness. A retrospective cohort design used 2007-2010 California Medicaid claims data (n=585). Our dependent variables were hospice utilization (i.e., hospice enrollment, hospice length of stay) and the independent variable was usual source of primary care. Multivariate regression techniques including least squares regression, multivariate logistic regression, and negative binomial regression were used in the analysis of the relationship between usual source of primary care and hospice utilization and end-of-life transitions. Ten percent of our sample utilized hospice services. Having a usual source of primary care was associated with an increase in hospice enrollment, hospice length of stay, and end-of-life transitions. Adolescents with a cancer diagnosis were more likely to enroll in hospice services. For adolescents at the end of life, having a usual source of primary care had a significant impact on hospice enrollment and length of stay. This study is among the first to demonstrate a relationship between primary care and hospice use among this vulnerable population.

  5. Harm reduction services as a point-of-entry to and source of end-of-life care and support for homeless and marginally housed persons who use alcohol and/or illicit drugs: a qualitative analysis.

    Science.gov (United States)

    McNeil, Ryan; Guirguis-Younger, Manal; Dilley, Laura B; Aubry, Tim D; Turnbull, Jeffrey; Hwang, Stephen W

    2012-05-17

    Homeless and marginally housed persons who use alcohol and/or illicit drugs often have end-of-life care needs that go unmet due to barriers that they face to accessing end-of-life care services. Many homeless and marginally housed persons who use these substances must therefore rely upon alternate sources of end-of-life care and support. This article explores the role of harm reduction services in end-of-life care services delivery to homeless and marginally housed persons who use alcohol and/or illicit drugs. A qualitative case study design was used to explore end-of-life care services delivery to homeless and marginally housed persons in six Canadian cities. A key objective was to explore the role of harm reduction services. 54 health and social services professionals participated in semi-structured qualitative interviews. All participants reported that they provided care and support to this population at end-of-life. Harm reduction services (e.g., syringe exchange programs, managed alcohol programs, etc.) were identified as a critical point-of-entry to and source of end-of-life care and support for homeless and marginally housed persons who use alcohol and/or illicit drugs. Where possible, harm reduction services facilitated referrals to end-of-life care services for this population. Harm reduction services also provided end-of-life care and support when members of this population were unable or unwilling to access end-of-life care services, thereby improving quality-of-life and increasing self-determination regarding place-of-death. While partnerships between harm reduction programs and end-of-life care services are identified as one way to improve access, it is noted that more comprehensive harm reduction services might be needed in end-of-life care settings if they are to engage this underserved population.

  6. Physician Religion and End-of-Life Pediatric Care: A Qualitative Examination of Physicians' Perspectives.

    Science.gov (United States)

    Bateman, Lori Brand; Clair, Jeffrey Michael

    2015-01-01

    Physician religion/spirituality has the potential to influence the communication between physicians and parents of children at the end of life. In order to explore this relationship, the authors conducted two rounds of narrative interviews to examine pediatric physicians' perspectives (N=17) of how their religious/spiritual beliefs affect end-of-life communication and care. Grounded theory informed the design and analysis of the study. As a proxy for religiosity/spirituality, physicians were classified into the following groups based on the extent to which religious/spiritual language was infused into their responses: Religiously Rich Responders (RRR), Moderately Religious Responders (MRR), and Low Religious Responders (LRR). Twelve of the 17 participants (71%) were classified into the RRR or MRR groups. The majority of participants suggested that religion/spirituality played a role in their practice of medicine and communication with parents in a myriad of ways and to varying degrees. Participants used their religious/spiritual beliefs to support families' spirituality, uphold hope, participate in prayer, and alleviate their own emotional distress emerging from their patients' deaths.

  7. Measuring comfort in caregivers and patients during late end-of-life care.

    Science.gov (United States)

    Novak, B; Kolcaba, K; Steiner, R; Dowd, T

    2001-01-01

    The purpose of this study was to test several formats of end-of-life comfort instruments for patients and closely involved caregivers. Kolcaba's Comfort Theory was the theoretical framework utilized. Different response formats for two end-of-life (EOL) comfort questionnaires (for patients and caregivers, respectively), and horizontal and vertical visual analog scales for total comfort (TC) lines were compared in two phases. Evaluable data were collected from both members of 38 patient-caregiver dyads in each phase. Suitable dyads were recruited from two hospice agencies in northeastern Ohio. Cronbach's alpha for the EOL comfort questionnaire (six response Likert-type format) tested during phase I for patients was .98 and for caregivers was .97. Test-retest reliability for the vertical TC line tested during phase I for patients was .64 and for caregivers was .79. The implications of this study for nursing practice and research are derived from the American Nursing Association (ANA) position statement about EOL care, which states that comfort is the goal of nursing for this population. These instruments will be useful for assessing comfort in actively dying patients and comfort of their caregivers as well as for developing evidence-based practice for this population.

  8. Care of cancer patients at the end of life in a German university hospital: A retrospective observational study from 2014.

    Directory of Open Access Journals (Sweden)

    Burkhard Dasch

    Full Text Available Cancer care including aggressive treatment procedures during the last phase of life in patients with incurable cancer has increasingly come under scrutiny, while integrating specialist palliative care at an early stage is regarded as indication for high quality end-of-life patient care.To describe the demographic and clinical characteristics and the medical care provided at the end of life of cancer patients who died in a German university hospital.Retrospective cross-sectional study on the basis of anonymized hospital data for cancer patients who died in the Munich University Hospital in 2014. Descriptive analysis and multivariate logistic regression analyses for factors influencing the administration of aggressive treatment procedures at the end of life.Overall, 532 cancer patients died. Mean age was 66.8 years, 58.5% were men. 110/532 (20.7% decedents had hematologic malignancies and 422/532 (79.3% a solid tumor. Patients underwent the following medical interventions in the last 7/30 days: chemotherapy (7.7%/38.3%, radiotherapy (2.6%/6.4%, resuscitation (8.5%/10.5%, surgery (15.2%/31.0%, renal replacement therapy (12.0%/16.9%, blood transfusions (21.2%/39.5%, CT scan (33.8%/60.9%. In comparison to patients with solid tumors, patients with hematologic malignancies were more likely to die in intensive care (25.4% vs. 49.1%; p = 0.001, and were also more likely to receive blood transfusions (OR 2.21; 95% CI, 1.36 to 3.58; p = 0.001 and renal replacement therapy (OR 2.65; 95% CI, 1.49 to 4.70; p = 0.001 in the last 7 days of life. Contact with the hospital palliative care team had been initiated in 161/532 patients (30.3%. In 87/161 cases (54.0%, the contact was initiated within the last week of the patient's life.Overambitious treatments are still reality at the end of life in cancer patients in hospital but patients with solid tumors and hematologic malignancies have to be differentiated. More efforts are necessary for the timely inclusion of

  9. Rural versus urban differences in end-of-life care for lung cancer patients in Germany.

    Science.gov (United States)

    Walter, Julia; Tufman, Amanda; Leidl, Reiner; Holle, Rolf; Schwarzkopf, Larissa

    2018-07-01

    To assess rural-urban differences in healthcare utilization and supportive care at the end-of-life in German lung cancer patients. We identified 12,929 patients with incident lung cancer in 2009 from claims data and categorized them to four district types (major city, urban, rural, remote rural). We compared site of death, unplanned hospitalizations, hospital days, outpatient doctor, general practitioner (GP) and home visits, structured palliative care, therapy with antidepressants, pain relief medication and chemotherapy, and therapeutic puncturing in the last 30 and 14 days of life using mixed models with logistic link function for binary outcomes and log link function for count data. We adjusted all models by age, sex, comorbidities, metastases location and presence of multiple tumors at diagnosis, survival in months, and type of tumor-directed treatment. We found significant differences in two of the outcomes measured. The likelihood of > 14 hospital days in the last 30 days was significantly higher in rural districts than in remote rural districts (1.27 [1.05, 1.52], p = 0.0003). The number of visits to the GP in the last 30 days of life was significantly lower in urban districts than in remote rural districts (β = - 0.19 [- 0.32, - 0.06], p = <0.0001). No other endpoints were associated with regional differences. Triggering factors for high and low utilization of healthcare were mostly age, comorbidities, and prior anticancer treatment. Healthcare utilization and supportive care did not differ significantly between different district types. Results reject the hypothesis of regional inequity in end-of-life care of lung cancer patients in Germany.

  10. Critical Care Nurses' Suggestions to Improve End-of-Life Care Obstacles: Minimal Change Over 17 Years.

    Science.gov (United States)

    Beckstrand, Renea L; Hadley, Kacie Hart; Luthy, Karlen E; Macintosh, Janelle L B

    Critical-care nurses (CCNs) provide end-of-life (EOL) care on a daily basis as 1 in 5 patients dies while in intensive care units. Critical-care nurses overcome many obstacles to perform quality EOL care for dying patients. The purposes of this study were to collect CCNs' current suggestions for improving EOL care and determine if EOL care obstacles have changed by comparing results to data gathered in 1998. A 72-item questionnaire regarding EOL care perceptions was mailed to a national, geographically dispersed, random sample of 2000 members of the American Association of Critical-Care Nurses. One of 3 qualitative questions asked CCNs for suggestions to improve EOL care. Comparative obstacle size (quantitative) data were previously published. Of the 509 returned questionnaires, 322 (63.3%) had 385 written suggestions for improving EOL care. Major themes identified were ensuring characteristics of a good death, improving physician communication with patients and families, adjusting nurse-to-patient ratios to 1:1, recognizing and avoiding futile care, increasing EOL education, physicians who are present and "on the same page," not allowing families to override patients' wishes, and the need for more support staff. When compared with data gathered 17 years previously, major themes remained the same but in a few cases changed in order and possible causation. Critical-care nurses' suggestions were similar to those recommendations from 17 years ago. Although the order of importance changed minimally, the number of similar themes indicated that obstacles to providing EOL care to dying intensive care unit patients continue to exist over time.

  11. Public health approaches to end-of-life care in the UK: an online survey of palliative care services.

    Science.gov (United States)

    Paul, Sally; Sallnow, Libby

    2013-06-01

    The public health approach to end-of-life care has gained recognition over the past decade regarding its contribution to palliative care services. Terms, such as health-promoting palliative care, and compassionate communities, have entered the discourse of palliative care and practice; examples exist in the UK and globally. This scoping study aimed to determine if such initiatives were priorities for hospices in the UK and, if so, provide baseline data on the types of initiatives undertaken. An online survey was designed, piloted and emailed to 220 palliative care providers across the four UK countries. It included a total of six questions. Quantitative data were analysed using descriptive statistics. Qualitative data were analysed thematically. There was a 66% response rate. Of those providers, 60% indicated that public health approaches to death, dying and loss were a current priority for their organisation. Respondents identified a range of work being undertaken currently in this area. The most successful were felt to be working with schools and working directly with local community groups. The findings demonstrate the relevance of a public health approach for palliative care services and how they are currently engaging with the communities they serve. Although the approach was endorsed by the majority of respondents, various challenges were highlighted. These related to the need to balance this against service provision, and the need for more training and resources to support these initiatives, at both national and community levels.

  12. Circumstances surrounding death and nursing difficulties with end-of-life care for individuals with ALS in central Japan.

    Science.gov (United States)

    Ushikubo, Mitsuko; Okamoto, Koichi

    2012-11-01

    This study aimed to clarify the circumstances surrounding death for people with amyotrophic lateral sclerosis (ALS) in Japan and difficulties in providing home-care end-of-life nursing for these individuals. A questionnaire was mailed to the directors of 709 home-care nursing agencies located in central Japan. Of 232 questionnaires returned (response rate 32.8%), 49 reported treating someone with ALS. Overall, 31% of these patients died at home, whereas 63% were admitted to hospital from a few days to months preceding death. Respiratory insufficiency was identified as the cause of death in 73% of cases, 45% of the deaths were sudden, and 27% of the deaths involved CO2 narcosis. Analysis of the reported nursing difficulties resulted in five categories: lack of adaptation to the disease or disease progression by the patient and/or their family, involvement with family, how to select/deliver care, decision-making and communication, and poor collaboration with other practitioners. Family care and family education are important to supporting the end-of-life process for people with ALS. Use of advance directives and collaboration with other related practitioners are recommended to enhance communication linked to psychological care and informed consent.

  13. Negotiation, Mediation and Communication between Cultures: End-of-Life Care for South Asian Immigrants in Canada from the Perspective of Family Caregivers.

    Science.gov (United States)

    Weerasinghe, Swarna; Maddalena, Victor

    2016-01-01

    In the present study, we explored family caregivers' experiences in providing end-of-life care for terminally ill South Asian immigrants. We employed qualitative methods and. in-depth interviews were conducted with seven family caregivers living in Nova Scotia, Canada. Interview data were validated, coded and organized for themes. Three major themes identified in the data illustrated (a) how South Asian caregivers experienced clashes between biomedical and ethno-cultural realms of care that led to cultural insensitivity, (b) how family members acted as mediators, and (c) how communication issues that challenged cultural sensitivity were handled. Findings provide directions for culturally sensitive end-of-life care planning.

  14. Family caregivers' conceptualisation of quality end-of-life care for people with dementia: A qualitative study.

    Science.gov (United States)

    Davies, Nathan; Rait, Greta; Maio, Laura; Iliffe, Steve

    2017-09-01

    People with dementia have been described as the 'disadvantaged dying' with poor end-of-life care. Towards the end of life, people with dementia cannot report on the care they receive. It is therefore important to talk to caregivers; however, few have explored the views about end-of-life care from the caregivers' perspective. The majority of research on family caregivers has focussed on the burden and psychological impact of caring for a relative with dementia. This study aimed to explore the views of family caregivers about quality end-of-life care for people with dementia. Qualitative study using in-depth interviews and analysed using thematic analysis. Purposive sampling from a third sector organisation's caregiver network was used to recruit 47 caregivers in England (2012-2013), consisting of (1) family caregivers of someone who had recently received a diagnosis of dementia, (2) family caregivers currently caring for someone with dementia and (3) bereaved family caregivers. Three over-arching themes were derived from the interviewees' discourse, including maintaining the person within, fostering respect and dignity and showing compassion and kindness. End-of-life care for people with dementia does not differ from care throughout the dementia trajectory. Throughout the findings, there is an implicit underlying theme of conflict: conflict between family caregivers and an increasingly systematised service of care and conflict between family caregivers and professionals. This study has in particular demonstrated the importance of the psycho-social aspects of care, aligning with the holistic definition of palliative care.

  15. End-of-life care in general practice: a cross-sectional, retrospective survey of ‘cancer’, ‘organ failure’ and ‘old-age/dementia’ patients.

    NARCIS (Netherlands)

    Evans, N.; Pasman, H.R.W.; Donker, G.A.; Deliens, L.; Block, L. van den; Onwuteaka-Philipsen, B.

    2014-01-01

    Background: End-of-life care is often provided in primary care settings. Aim: To describe and compare general-practitioner end-of-life care for Dutch patients who died from ‘cancer’, ‘organ failure’ and ‘old-age or dementia’. Design: A cross-sectional, retrospective survey was conducted within a

  16. The effect of rapid response teams on end-of-life care: A retrospective chart review

    Science.gov (United States)

    Tam, Benjamin; Salib, Mary; Fox-Robichaud, Alison

    2014-01-01

    BACKGROUND: A subset of critically ill patients have end-of-life (EOL) goals that are unclear. Rapid response teams (RRTs) may aid in the identification of these patients and the delivery of their EOL care. OBJECTIVES: To characterize the impact of RRT discussion on EOL care, and to examine how a preprinted order (PPO) set for EOL care influenced EOL discussions and outcomes. METHODS: A single-centre retrospective chart review of all RRT calls (January 2009 to December 2010) was performed. The effect of RRT EOL discussions and the effect of a hospital-wide PPO set on EOL care was examined. Charts were from the Ontario Ministry of Health and Long-Term Care Critical Care Information Systemic database, and were interrogated by two reviewers. RESULTS: In patients whose EOL status changed following RRT EOL discussion, there were fewer intensive care unit (ICU) transfers (8.4% versus 17%; PEOL status following the introduction of an EOL PPO, from 20% (before) to 31% (after) (PEOL status following RRT-led EOL discussion was associated with reduced ICU transfers and enhanced access to palliative care services. Further study is required to identify and deconstruct barriers impairing timely and appropriate EOL discussions. PMID:25299222

  17. Current HIV/AIDS end-of-life care in sub-Saharan Africa: a survey of models, services, challenges and priorities

    Directory of Open Access Journals (Sweden)

    O'Neill Joseph F

    2003-10-01

    Full Text Available Abstract Background In response to increased global public health funding initiatives to HIV/AIDS care in Africa, this study aimed to describe practice models, strategies and challenges to delivering end-of-life care in sub-Saharan Africa. Methods A survey end-of-life care programs was conducted, addressing the domains of service aims and configuration, barriers to pain control, governmental endorsement and strategies, funding, monitoring and evaluation, and research. Both closed and qualitative responses were sought. Results Despite great structural challenges, data from 48 programs in 14 countries with a mean annual funding of US $374,884 demonstrated integrated care delivery across diverse settings. Care was commonly integrated with all advanced disease care (67% and disease stages (65% offering care from diagnosis. The majority (98% provided home-based care for a mean of 301 patients. Ninety-four percent reported challenges in pain control (including availability, lack of trained providers, stigma and legal restrictions, and 77% addressed the effects of poverty on disease progression and management. Although 85% of programs reported Government endorsement, end-of-life and palliative care National strategies were largely absent. Conclusions The interdependent tasks of expanding pain control, balancing quality and coverage of care, providing technical assistance in monitoring and evaluation, collaborating between donor agencies and governments, and educating policy makers and program directors of end-of-life care are all necessary if resources are to reach their goals.

  18. Designing Effective Interactions for Concordance around End-of-Life Care Decisions: Lessons from Hospice Admission Nurses

    Directory of Open Access Journals (Sweden)

    Carey Candrian

    2017-04-01

    Full Text Available Near the end of life, hospice care reduces symptom-related distress and hospitalizations while improving caregiving outcomes. However, it takes time for a person to gain a sufficient understanding of hospice and decide to enroll. This decision is influenced by knowledge of hospice and its services, emotion and fear, cultural and religious beliefs, and an individual’s acceptance of diagnosis. Hospice admission interactions, a key influence in shaping decisions regarding hospice care, happen particularly late in the illness trajectory and are often complex, unpredictable, and highly variable. One goal of these interactions is ensuring patients and families have accurate and clear information about hospice care to facilitate informed decisions. So inconsistent are practices across hospices in consenting patients that a 2016 report from the Office of Inspector General (OIG entitled “Hospices should improve their election statements and certifications of terminal illness” called for complete and accurate election statements to ensure that hospice patients and their caregivers can make informed decisions and understand the costs and benefits of choosing hospice care. Whether complete and accurate information at initial admission visits improves interactions and outcomes is unknown. Our recent qualitative work investigating interactions between patients, caregivers, and hospice nurses has uncovered diverse and often diverging stakeholder-specific expectations and perceptions which if not addressed can create discordance and inhibit decision-making. This paper focuses on better understanding the communication dynamics and practices involved in hospice admission interactions in order to design more effective interactions and support the mandate from the OIG to provide hospice patients and their caregivers with accurate and complete information. This clarity is particularly important when discussing the non-curative nature of hospice care, and the

  19. Traditional expectations versus US realities: first- and second-generation Asian Indian perspectives on end-of-life care.

    Science.gov (United States)

    Sharma, Rashmi K; Khosla, Nidhi; Tulsky, James A; Carrese, Joseph A

    2012-03-01

    Although end-of-life care preferences vary across racial/ethnic groups, little is known about how cultural values affect end-of-life care preferences among South Asian immigrants and their offspring in the US. To examine the perspectives of first- and second-generation South Asians living in the US regarding end-of-life care. Focus group study. Discussions explored participant preferences and experiences with family members facing the end of life. Twelve first-generation and 11 second-generation self-identified Asian Indians living in the mid-Atlantic region. Content analysis of focus group transcripts. First-generation participants ranged in age from 41 to 76 years and were evenly split by gender. Second-generation participants ranged in age from 23 to 36 years and included seven women and four men. All participants were highly educated, and two thirds were either studying or working in a health care field. All but two subjects were Hindu. Several themes emerged that highlighted cultural differences and challenges for this population in the context of end-of-life care: attitudes toward death and suffering; family duty; and preferences for information disclosure and decision making. Participants described cultural challenges due to the evolution of traditional roles, lack of explicit discussion between patients and family members about preferences and care expectations, and a tension between wanting to meet traditional expectations and the challenges in doing so given US social realities. Traditional cultural values, such as duty to family, greatly influenced end-of-life care preferences and retained importance across generations. Clinicians caring for Asian Indian patients at the end of life may be better able to assess care preferences after exploring the complex interplay between traditional expectations and specific social realities for each patient. Particular attention should be given to attitudes toward death and suffering, family duty, and preferences for

  20. Mentoring the Next Generation of Social Workers in Palliative and End-of-Life Care: The Zelda Foster Studies Program.

    Science.gov (United States)

    Gardner, Daniel S; Gerbino, Susan; Walls, Jocelyn Warner; Chachkes, Esther; Doherty, Meredith J

    2015-01-01

    As Americans live longer with chronic illnesses, there is a growing need for social workers with the knowledge and skills to deliver quality palliative care to older adults and their families. Nevertheless, there remains a critical shortage of social workers prepared to provide quality palliative and end-of-life care (PELC) and to maintain the field into the next generation. Formal mentorship programs represent an innovative approach to enhancing practice, providing support and guidance, and promoting social work leadership in the field. This article reviews the literature on mentorship as an approach to professional and leadership development for emerging social workers in PELC. The Zelda Foster Studies Program in Palliative and End-of-Life Care bolsters competencies and mentors social workers in PELC over the trajectory of their careers, and enhances the capacity in the field. Findings from the first six years of two components of the ZF Program are examined to illustrate the feasibility, benefits, and challenges of formal mentorship programs. The authors describe the background, structure, and evaluation of the initiative's mentorship programs, and discuss the implications of mentorship in PELC for social work education, practice, and research.

  1. End of Life: An Overview

    Science.gov (United States)

    Toner, Mary Ann; Shadden, Barbara B.

    2012-01-01

    Speech-language pathologists (SLPs) provide services to patients confronting the end of life (EOL) in a variety of settings. Instead of targeting improvement of health or sustaining life, EOL services focus primarily on quality of life. Although SLPs may not consider themselves core members of the health care team providing EOL services, the…

  2. Cost accounting for end-of-life care: recommendations to the field by the Cost Accounting Workgroup.

    Science.gov (United States)

    Seninger, Stephen; Smith, Dean G

    2004-01-01

    Accurate measurement of economic costs is prerequisite to progress in improving the care delivered to Americans during the last stage of life. The Robert Wood Johnson Excellence in End-of-Life Care national program assembled a Cost Accounting Workgroup to identify accurate and meaningful methods to measure palliative and end-of-life health care use and costs. Eight key issues were identified: (1) planning the cost analysis; (2) identifying the perspective for cost analysis; (3) describing the end-of-life care program; (4) identifying the appropriate comparison group; (5) defining the period of care to be studied; (6) identifying the units of health care services; (7) assigning monetary values to health care service units; and (8) calculating costs. Economic principles of cost measurement and cost measurement issues encountered by practitioners were reviewed and incorporated into a set of recommendations.

  3. [End-of-life and euthanasia, an intensive care team's experience].

    Science.gov (United States)

    Baruteau, J; Devilliers, A; François, I; Blettery, B

    2002-04-20

    The improvement in the medical techniques used in intensive care units over the last 30 years has led to a different approach towards the end of life and death. Our study has underlined the feelings of all the staff of an intensive care unit towards the various difficulties engendered by death and the question of euthanasia. Conducted in the particular context of an intensive care unit, this work is a survey on the staff's feelings and factual experiences, in order to promote discussions on this painful subject. Sixty-one percent of the persons surveyed declared that euthanasia was ethically acceptable. The patients take the initiative of the request (92%) and the cohesion of the team is unanimously required. Pain and corporeal deterioration are the first motivations. Euthanasia is a difficult question, sometimes impassionate, and the care units have to consider whether they are concerned by the quality of their patients' care. The press regularly issues reports on this. But beyond these quantified questions, the staff who care for these ill patients are often very discreet. The regular confrontation with this situation changes the medical team's view of the profession.

  4. Nurse-perceived barriers to effective communication regarding prognosis and optimal end-of-life care for surgical ICU patients: a qualitative exploration.

    Science.gov (United States)

    Aslakson, Rebecca A; Wyskiel, Rhonda; Thornton, Imani; Copley, Christina; Shaffer, Dauryne; Zyra, Marylou; Nelson, Judith; Pronovost, Peter J

    2012-08-01

    Integration of palliative care for intensive care unit (ICU) patients is important but often challenging, especially in surgical ICUs (SICUs), in part because many surgeons equate palliative care with terminal care and failure of restorative care. SICU nurses, who are key front-line clinicians, can provide insights into barriers for delivery of optimal palliative care in their setting. We developed a focus group guide to identify barriers to two key components of palliative care-optimal communication regarding prognosis and optimal end-of-life care-and used the tool to conduct focus groups of nurses providing bedside care in three SICUs at a tertiary care, academic, inner city hospital. Using content analysis technique, responses were organized into thematic domains that were validated by independent observers and a subset of participating nurses. Four focus groups included a total of 32 SICU nurses. They identified 34 barriers to optimal communication regarding prognosis, which were summarized into four domains: logistics, clinician discomfort with discussing prognosis, inadequate skill and training, and fear of conflict. For optimal end-of-life care, the groups identified 24 barriers in four domains: logistics, inability to acknowledge an end-of-life situation, inadequate skill and training, and cultural differences relating to end-of-life care. Nurses providing bedside care in SICUs identify barriers in several domains that may impede optimal discussions of prognoses and end-of-life care for patients with surgical critical illness. Consideration of these perceived barriers and the underlying SICU culture is relevant for designing interventions to improve palliative care in this setting.

  5. Sedation, alimentation, hydration, and equivocation: careful conversation about care at the end of life.

    Science.gov (United States)

    Jansen, Lynn A; Sulmasy, Daniel P

    2002-06-04

    In the recent medical ethics literature, several authors have recommended terminal sedation and refusal of hydration and nutrition as important, morally acceptable, and relatively uncontroversial treatment options for end-of-life suffering. However, not all authors use these terms to refer to the same practices. This paper examines the various ways that the terms terminal sedation and refusal of hydration and nutrition have been used in the medical literature. Although some of these practices are ethically appropriate responses to end-of-life suffering, others (at least as they are currently described in the medical ethics literature) are not. This paper identifies and discusses the principles that morally distinguish these practices from one another and specifically describes different features of medical practices and moral principles that affect the moral acceptability of various medical treatments. These distinctions reveal the complexity of the issues surrounding terminal sedation and refusal of hydration and nutrition, a complexity that has not been adequately addressed in recent discussions.

  6. Diversity in Defining End of Life Care: An Obstacle or the Way Forward?

    Science.gov (United States)

    Gysels, Marjolein; Evans, Natalie; Meñaca, Arantza; Higginson, Irene J.; Harding, Richard; Pool, Robert

    2013-01-01

    Aim The terms used to describe care at the end of life (EoL), and its definitions, have evolved over time and reflect the changes in meaning the concept has undergone as the field develops. We explore the remit of EoL care as defined by experts in EoL care, from across Europe and beyond, to understand its current usage and meanings. Method A qualitative survey attached to a call for expertise on cultural issues in EoL care was sent to experts in the field identified through the literature, European EoL care associations, and conferences targeted at EoL care professionals. Respondents were asked to identify further contacts for snowball recruitment.The responses were analysed using content and discourse analysis. Results Responses were received from 167 individuals (33% response rate), mainly from academics (39%) and clinical practitioners working in an academic context (23%) from 19 countries in Europe and beyond. 29% of respondents said explicitly that there was no agreed definition of EoL care in practice and only 14% offered a standard definition (WHO, or local institution). 2% said that the concept of EoL care was not used in their country, and 5% said that there was opposition to the concept for religious or cultural reasons. Two approaches were identified to arrive at an understanding of EoL care: exclusively by drawing boundaries through setting time frames, and inclusively by approaching its scope in an integrative way. This led to reflections about terminology and whether defining EoL care is desirable. Conclusion The global expansion of EoL care contributes to the variety of interpretations of what it means. This complicates the endeavour of defining the field. However, when diversity is taken seriously it can open up new perspectives to underpin the ethical framework of EoL care. PMID:23844145

  7. Administrators' perspectives on end-of-life care for cancer patients in Japanese long-term care facilities.

    Science.gov (United States)

    Fukahori, Hiroki; Miyashita, Mitsunori; Morita, Tatsuya; Ichikawa, Takayuki; Akizuki, Nobuya; Akiyama, Miki; Shirahige, Yutaka; Eguchi, Kenji

    2009-10-01

    The purpose of this study was to clarify administrators' perspectives on availability of recommended strategies for end-of-life (EOL) care for cancer patients at long-term care (LTC) facilities in Japan. A cross-sectional survey was conducted with administrators at Japanese LTC facilities. Participants were surveyed about their facilities, reasons for hospitalization of cancer patients, and their perspectives on availability of and strategies for EOL care. The 97 responses were divided into medical facility (n = 24) and non-medical facility (n = 73) groups according to physician availability. The most frequent reasons for hospitalization were a sudden change in patient's condition (49.4%), lack of around-the-clock care (43.0%), and inability to palliate symptoms (41.0%). About 50% of administrators believed their facilities could provide EOL care if supported by palliative care experts. There was no significant difference between facility types (P = 0.635). Most administrators (81.2%) regarded unstable cancer patients as difficult to care for. However, many (68.4%) regarded opioids given orally as easy to administer, but regarded continuous subcutaneous infusion/central venous nutrition as difficult. Almost all administrators believed the most useful strategy was transferring patients to hospitals at the request of patients or family members (96.9%), followed by consultation with palliative care experts (88.5%). Although LTC facilities in Japan currently do not provide adequate EOL care for cancer patients, improvement might be possible with support by palliative care teams. Appropriate models are necessary for achieving a good death for cancer patients. Interventions based on these models are necessary for EOL care for cancer patients in LTC facilities.

  8. A pan-European survey of research in end-of-life cancer care.

    Science.gov (United States)

    Sigurdardottir, Katrin Ruth; Haugen, Dagny Faksvåg; Bausewein, Claudia; Higginson, Irene J; Harding, Richard; Rosland, Jan Henrik; Kaasa, Stein

    2012-01-01

    To date, there is no coordinated strategy for end-of-life (EOL) cancer care research in Europe. The PRISMA (Reflecting the Positive Diversities of European Priorities for Research and Measurement in End-of-life Care) project is aiming to develop a programme integrating research and measurement in EOL care. This survey aimed to map and describe present EOL cancer care research in Europe and to identify priorities and barriers. A questionnaire of 62 questions was developed and 201 researchers in 41 European countries were invited to complete it online in May 2009. An open invitation to participate was posted on the internet. Invited contacts in 36 countries sent 127 replies; eight additional responses came through websites. A total of 127 responses were eligible for analysis. Respondents were 69 male and 58 female, mean age 49 (28-74) years; 85% of the scientific team leaders were physicians. Seventy-one of 127 research groups were located in a teaching hospital or cancer centre. Forty-five percent of the groups had only one to five members and 28% six to ten members. Sixty-three of 92 groups reported specific funding for EOL care research. Seventy-five percent of the groups had published papers in journals with impact factor ≤ 5 in the last 3 years; 8% had published in journals with impact factor >10. Forty-four out of 90 groups reported at least one completed Ph.D. in the last 3 years. The most frequently reported active research areas were pain, assessment and measurement tools, and last days of life and quality of death. Very similar areas--last days of life and quality of death, pain, fatigue and cachexia, and assessment and measurement tools--were ranked as the most important research priorities. The most important research barriers were lack of funding, lack of time, and insufficient knowledge/expertise. Most research groups in EOL care are small. The few large groups (14%) had almost half of the reported publications, and more than half of the current Ph

  9. [Volunteering in end-of-life care : Challenges, problems and perspectives].

    Science.gov (United States)

    Schneider, Werner

    2017-01-01

    Volunteering in the hospice movement has had a profound impact on generating awareness of hospice work and palliative care in the context of supporting dying persons and their relatives as well as on integrating respective services in the existing health care system. This paper focuses on two specific questions: First, it asks how society is changing with respect to dealing with dying and death, and more precisely with dying persons, which is recognizable by the integration of hospice work and palliative care in the healthcare system and related to the relevance of volunteering in the sense of a citizens' movement. Second, this paper asks what the specific roles of volunteers are as well as the possibilities and limits of voluntary practice in end-of-life care and accompaniment. To answer these questions, the pivotal objectives of the hospice movement - the transformation of the social awareness regarding dying and death, as well as the reorganization of "institutions of dying" - will first be outlined by reference to the concept of "good dying", a specific hospice attitude together with hospice culture and palliative competence. In a second step, the relevance of volunteering and the specific role of volunteers in the actual practice of hospice work and palliative care will be outlined alongside current indicators and recognizable alteration tendencies, before concluding with a discussion of the perspectives of hospices as a citizens' movement.

  10. Physical activity history and end-of-life hospital and long-term care

    DEFF Research Database (Denmark)

    von Bonsdorff, Mikaela B; Rantanen, Taina; Leinonen, Raija

    2009-01-01

    persons aged 66-98 years at death, who, on average 5.8 years prior to death, had participated in an interview about their current and earlier physical activity. Data on the use of care in the last year of life are register-based data and complete. RESULTS: Men needed on average 96 days (SD 7.0) and women.......06-2.43), than for those who had been consistently active from midlife onward, whereas use of hospital care did not correlate with physical activity history. CONCLUSION: People who had been physically active since midlife needed less end-of-life inpatient care but patterns differed between men and women....... had been consistently physically active, whereas use of long-term care did not correlate with physical activity history. Among women, the risk for long-term care was higher for those who had been sedentary (IRR 2.03, 95% CI 1.28-3.21) or only occasionally physically active (IRR 1.60, 95% CI 1...

  11. General Practitioners' Attitudes towards Essential Competencies in End-of-Life Care: A Cross-Sectional Survey.

    Science.gov (United States)

    Giezendanner, Stéphanie; Jung, Corinna; Banderet, Hans-Ruedi; Otte, Ina Carola; Gudat, Heike; Haller, Dagmar M; Elger, Bernice S; Zemp, Elisabeth; Bally, Klaus

    2017-01-01

    Identifying essential competencies in end-of-life care, as well as general practitioners' (GPs) confidence in these competencies, is essential to guide training and quality improvement efforts in this domain. To determine which competencies in end-of-life care are considered important by GPs, to assess GPs' confidence in these competencies in a European context and their reasons to refer terminally ill patients to a specialist. Cross-sectional postal survey involving a stratified random sample of 2000 GPs in Switzerland in 2014. Survey development was informed by a previous qualitative exploration of relevant end-of-life GP competencies. Main outcome measures were GPs' assessment of the importance of and confidence in 18 attributes of end-of-life care competencies, and reasons for transferring care of terminally-ill patients to a specialist. GP characteristics associated with main outcome measures were tested using multivariate regression models. The response rate was 31%. Ninety-nine percent of GPs considered the recognition and treatment of pain as important, 86% felt confident about it. Few GPs felt confident in cultural (16%), spiritual (38%) and legal end-of-life competencies such as responding to patients seeking assisted suicide (35%) although more than half of the respondents regarded these competencies as important. Most frequent reasons to refer terminally ill patients to a specialist were lack of time (30%), better training of specialists (23%) and end-of-life care being incompatible with other duties (19%). In multiple regression analyses, confidence in end-of-life care was positively associated with GPs' age, practice size, home visits and palliative training. GPs considered non-somatic competencies (such as spiritual, cultural, ethical and legal aspects) nearly as important as pain and symptom control. Yet, few GPs felt confident in these non-somatic competencies. These findings should inform training and quality improvement efforts in this domain, in

  12. End-of-life care of women with gynecologic malignancies: a pilot study.

    Science.gov (United States)

    Nevadunsky, Nicole S; Spoozak, Lori; Gordon, Sharon; Rivera, Enid; Harris, Kimala; Goldberg, Gary L

    2013-03-01

    There are limited data regarding the end-of-life care for women with gynecologic malignancies. We set out to generate pilot data describing the care that women with gynecologic malignancies received in the last 6 months of life. Patient demographics, patterns of care, and utilization of palliative medicine consultation services were evaluated. One hundred patients who died of gynecologic malignancies were identified in our institutional database. Only patients who had received treatment with a gynecologic oncologist within 1 year of death were included. Medical records were reviewed for relevant information. Data were abstracted from the electronic medical record, and analyses were made using Student t test and Mann-Whitney U test with SPSS software. The mean age of patients was 60 years (range, 30-94 years). Racial/ethnic distribution was as follows: 38%, white; 34%, black; and 15%, Hispanic. Seventy-five percent of patients received chemotherapy within the last 6 months of life, and 30% received chemotherapy within the last 6 weeks of life. The median number of days hospitalized during the last 6 months of life was 24 (range, 0-183 days). During the last 6 months of life, 19% were admitted to the intensive care unit, 17% were intubated, 5% had terminal extubation, and 13% had cardiopulmonary resuscitative efforts. Sixty-four percent had a family meeting, 50% utilized hospice care, and 49% had palliative medicine consultations. There was a significant difference in hospice utilization when comparison was made between patients who had 14 days or more from consultation until death versus patients who had 14 days or less or no consultation, 21 (72%) versus 29 (41%), P = 0.004. Patients who were single were less likely to have a palliative medicine consultation, P = 0.005. End-of-life care for patients with gynecologic malignancies often includes futile, aggressive treatments and invasive procedures. It is unknown whether these measures contribute to longevity or

  13. Japanese citizens' attitude toward end-of-life care and advance directives: A qualitative study for members of medical cooperatives.

    Science.gov (United States)

    Hirayama, Yoko; Otani, Takashi; Matsushima, Masato

    2017-12-01

    Japanese citizens are interested in choosing their own end-of-life care, but few have created their own advance directive. This study examined changes among Japanese citizens' attitudes toward end-of-life care and advance directives and explored factors that affected these attitudes. We conducted five focus groups with 48 participants in 2009 and 2010. All participants were members of health cooperatives in Tokyo. We identified many barriers and reasons for creating and writing down advance directives. Experience caring for dying people and having a serious disease affected attitudes toward advance directives. Some participants changed their attitude toward end-of-life care by writing their own advance directive. When someone is writing advance directives, asking about his/her past experience of caring may be helpful. And learning about or filling out advance directives may help to break down resistance to using these documents.

  14. Palliative care at the end-of-life in glioma patients.

    Science.gov (United States)

    Koekkoek, Johan A F; Chang, Susan; Taphoorn, Martin J B

    2016-01-01

    The end-of-life (EOL) phase of patients with a glioma starts when symptom prevalence increases and antitumor treatment is no longer effective. During the EOL phase, care is primarily aimed at reducing symptom burden while maintaining quality of life as long as possible without inappropriate prolongation of life. Palliative care during the EOL phase also involves complex medical decisions for the prevention and relief of suffering. We discuss the prevalence and treatment of the most common EOL symptoms, decision making in the EOL phase, the organization of EOL care, and the role of the patient's caregiver. Treating disease-specific symptoms, such as impaired consciousness, seizures, focal neurologic deficits and cognitive disturbances, is a major concern during the EOL phase, as these symptoms may interfere with EOL decision making. Advance care planning is aimed at reaching consensus about possible EOL decisions between all participants, respecting the values of patients and their informal caregivers. In order to prevent the possibility that the patient becomes incompetent to make informed decisions, we recommend initiating EOL conversations at a relatively early stage in the disease course. © 2016 Elsevier B.V. All rights reserved.

  15. Culture and end of life care: a scoping exercise in seven European countries.

    Science.gov (United States)

    Gysels, Marjolein; Evans, Natalie; Meñaca, Arantza; Andrew, Erin; Toscani, Franco; Finetti, Sylvia; Pasman, H Roeline; Higginson, Irene; Harding, Richard; Pool, Robert

    2012-01-01

    Culture is becoming increasingly important in relation to end of life (EoL) care in a context of globalization, migration and European integration. We explore and compare socio-cultural issues that shape EoL care in seven European countries and critically appraise the existing research evidence on cultural issues in EoL care generated in the different countries. We scoped the literature for Germany, Norway, Belgium, The Netherlands, Spain, Italy and Portugal, carrying out electronic searches in 16 international and country-specific databases and handsearches in 17 journals, bibliographies of relevant papers and webpages. We analysed the literature which was unearthed, in its entirety and by type (reviews, original studies, opinion pieces) and conducted quantitative analyses for each country and across countries. Qualitative techniques generated themes and sub-themes. A total of 868 papers were reviewed. The following themes facilitated cross-country comparison: setting, caregivers, communication, medical EoL decisions, minority ethnic groups, and knowledge, attitudes and values of death and care. The frequencies of themes varied considerably between countries. Sub-themes reflected issues characteristic for specific countries (e.g. culture-specific disclosure in the southern European countries). The work from the seven European countries concentrates on cultural traditions and identities, and there was almost no evidence on ethnic minorities. This scoping review is the first comparative exploration of the cultural differences in the understanding of EoL care in these countries. The diverse body of evidence that was identified on socio-cultural issues in EoL care, reflects clearly distinguishable national cultures of EoL care, with differences in meaning, priorities, and expertise in each country. The diverse ways that EoL care is understood and practised forms a necessary part of what constitutes best evidence for the improvement of EoL care in the future.

  16. Culture and End of Life Care: A Scoping Exercise in Seven European Countries

    Science.gov (United States)

    Gysels, Marjolein; Evans, Natalie; Meñaca, Arantza; Andrew, Erin; Toscani, Franco; Finetti, Sylvia; Pasman, H. Roeline; Higginson, Irene; Harding, Richard; Pool, Robert

    2012-01-01

    Aim Culture is becoming increasingly important in relation to end of life (EoL) care in a context of globalization, migration and European integration. We explore and compare socio-cultural issues that shape EoL care in seven European countries and critically appraise the existing research evidence on cultural issues in EoL care generated in the different countries. Methods We scoped the literature for Germany, Norway, Belgium, the Netherlands, Spain, Italy and Portugal, carrying out electronic searches in 16 international and country-specific databases and handsearches in 17 journals, bibliographies of relevant papers and webpages. We analysed the literature which was unearthed, in its entirety and by type (reviews, original studies, opinion pieces) and conducted quantitative analyses for each country and across countries. Qualitative techniques generated themes and sub-themes. Results A total of 868 papers were reviewed. The following themes facilitated cross-country comparison: setting, caregivers, communication, medical EoL decisions, minority ethnic groups, and knowledge, attitudes and values of death and care. The frequencies of themes varied considerably between countries. Sub-themes reflected issues characteristic for specific countries (e.g. culture-specific disclosure in the southern European countries). The work from the seven European countries concentrates on cultural traditions and identities, and there was almost no evidence on ethnic minorities. Conclusion This scoping review is the first comparative exploration of the cultural differences in the understanding of EoL care in these countries. The diverse body of evidence that was identified on socio-cultural issues in EoL care, reflects clearly distinguishable national cultures of EoL care, with differences in meaning, priorities, and expertise in each country. The diverse ways that EoL care is understood and practised forms a necessary part of what constitutes best evidence for the improvement of Eo

  17. Culture and end of life care: a scoping exercise in seven European countries.

    Directory of Open Access Journals (Sweden)

    Marjolein Gysels

    Full Text Available AIM: Culture is becoming increasingly important in relation to end of life (EoL care in a context of globalization, migration and European integration. We explore and compare socio-cultural issues that shape EoL care in seven European countries and critically appraise the existing research evidence on cultural issues in EoL care generated in the different countries. METHODS: We scoped the literature for Germany, Norway, Belgium, The Netherlands, Spain, Italy and Portugal, carrying out electronic searches in 16 international and country-specific databases and handsearches in 17 journals, bibliographies of relevant papers and webpages. We analysed the literature which was unearthed, in its entirety and by type (reviews, original studies, opinion pieces and conducted quantitative analyses for each country and across countries. Qualitative techniques generated themes and sub-themes. RESULTS: A total of 868 papers were reviewed. The following themes facilitated cross-country comparison: setting, caregivers, communication, medical EoL decisions, minority ethnic groups, and knowledge, attitudes and values of death and care. The frequencies of themes varied considerably between countries. Sub-themes reflected issues characteristic for specific countries (e.g. culture-specific disclosure in the southern European countries. The work from the seven European countries concentrates on cultural traditions and identities, and there was almost no evidence on ethnic minorities. CONCLUSION: This scoping review is the first comparative exploration of the cultural differences in the understanding of EoL care in these countries. The diverse body of evidence that was identified on socio-cultural issues in EoL care, reflects clearly distinguishable national cultures of EoL care, with differences in meaning, priorities, and expertise in each country. The diverse ways that EoL care is understood and practised forms a necessary part of what constitutes best evidence for

  18. End-of-Life Care for Blood Cancers: A Series of Focus Groups With Hematologic Oncologists

    Science.gov (United States)

    Odejide, Oreofe O.; Salas Coronado, Diana Y.; Watts, Corey D.; Wright, Alexi A.; Abel, Gregory A.

    2014-01-01

    Purpose: Hematologic cancers are associated with aggressive cancer-directed care near death and underuse of hospice and palliative care services. We sought to explore hematologic oncologists' perspectives and decision-making processes regarding end-of-life (EOL) care. Methods: Between September 2013 and January 2014, 20 hematologic oncologists from the Dana-Farber/Harvard Cancer Center participated in four focus groups regarding EOL care for leukemia, lymphoma, multiple myeloma, and hematopoietic stem-cell transplantation. Focus groups employed a semistructured format with case vignettes and open-ended questions and were followed by thematic analysis. Results: Many participants felt that identifying the EOL phase for patients with hematologic cancers was challenging as a result of the continuing potential for cure with advanced disease and the often rapid pace of decline near death. This difficulty was reported to result in later initiation of EOL care. Barriers to high-quality EOL care were also reported to be multifactorial, including unrealistic expectations from both physicians and patients, long-term patient-physician relationships resulting in difficulty conducting EOL discussions, and inadequacy of existing home-based EOL services. Participants also expressed concern that some EOL quality measures developed for solid tumors may be unacceptable for patients with blood cancers given their unique needs at the EOL (eg, palliative transfusions). Conclusion: Our analysis suggests that hematologic oncologists need better clinical markers for when to initiate EOL care. In addition, current quality measures may be inappropriate for identifying overly aggressive care for patients with blood cancers. Further research is needed to develop effective interventions to improve EOL care for this patient population. PMID:25294393

  19. Societal costs of home and hospital end-of-life care for palliative care patients in Ontario, Canada.

    Science.gov (United States)

    Yu, Mo; Guerriere, Denise N; Coyte, Peter C

    2015-11-01

    In Canada, health system restructuring has led to a greater focus on home-based palliative care as an alternative to institutionalised palliative care. However, little is known about the effect of this change on end-of-life care costs and the extent to which the financial burden of care has shifted from the acute care public sector to families. The purpose of this study was to assess the societal costs of end-of-life care associated with two places of death (hospital and home) using a prospective cohort design in a home-based palliative care programme. Societal cost includes all costs incurred during the course of palliative care irrespective of payer (e.g. health system, out-of-pocket, informal care-giving costs, etc.). Primary caregivers of terminal cancer patients were recruited from the Temmy Latner Centre for Palliative Care in Toronto, Canada. Demographic, service utilisation, care-giving time, health and functional status, and death data were collected by telephone interviews with primary caregivers over the course of patients' palliative trajectory. Logistic regression was conducted to model an individual's propensity for home death. Total societal costs of end-of-life care and component costs were compared between home and hospital death using propensity score stratification. Costs were presented in 2012 Canadian dollars ($1.00 CDN = $1.00 USD). The estimated total societal cost of end-of-life care was $34,197.73 per patient over the entire palliative trajectory (4 months on average). Results showed no significant difference (P > 0.05) in total societal costs between home and hospital death patients. Higher hospitalisation costs for hospital death patients were replaced by higher unpaid caregiver time and outpatient service costs for home death patients. Thus, from a societal cost perspective, alternative sites of death, while not associated with a significant change in total societal cost of end-of-life care, resulted in changes in the distribution of

  20. OA24 Support for terminally-ill cancer patients: perceptions of religious leaders about end-of-life spiritual care in lagos, nigeria.

    Science.gov (United States)

    Onibogi, Olanrewaju

    2015-04-01

    Religious leaders are well respected in most Nigerian communities and are often called in to provide support for terminally-ill patients. Many Nigeria communities still view cancer as a stigmatised disease. This study sought to elicit the perceptions of Christian and Islamic religious leaders and explore problems associated with their involvement in end-of-life care for cancer patients. Participants were recruited among 114 religious leaders. Four focus group discussion sessions were then conducted with open-ended questions on previous involvement in end-of-life care of cancer patients and whether they would like to do more. There were thirty (30) willing participants in all. The discussions were audiotaped, transcribed and coded using the NUDIST software. Ninety of the respondents (62%) would not be involved in end-of-life care. This is because of the fear of peer pressure. The responses could be classified under three major themes were identified: (1) Care supposed to be provided by all religious leaders (2) End-of-Life care in institutions are safer (3) End-of-Life care consumes time. Statements made by respondents include "I will fall out with many if I am found ministering to dying patients". We observe that peer pressure played an important role in the acceptability of end-of-life activities in this group. This could be used in the positive light in designing interventions. © 2015, Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

  1. Planning for Future Care and the End of Life: A Qualitative Analysis of Gay, Lesbian, and Heterosexual Couples.

    Science.gov (United States)

    Thomeer, Mieke Beth; Donnelly, Rachel; Reczek, Corinne; Umberson, Debra

    2017-12-01

    Two key components of end-of-life planning are (1) informal discussions about future care and other end-of-life preferences and (2) formal planning via living wills and other legal documents. We leverage previous work on the institutional aspects of marriage and on sexual-minority discrimination to theorize why and how heterosexual, gay, and lesbian married couples engage in informal and formal end-of-life planning. We analyze qualitative dyadic in-depth interviews with 45 midlife gay, lesbian, and heterosexual married couples ( N = 90 spouses). Findings suggest that same-sex spouses devote considerable attention to informal planning conversations and formal end-of-life plans, while heterosexual spouses report minimal formal or informal planning. The primary reasons same-sex spouses give for making end-of-life preparations are related to the absence of legal protections and concerns about discrimination from families. These findings raise questions about future end-of-life planning for same- and different-sex couples given a rapidly shifting legal and social landscape.

  2. Exploring the role of practical nursing wisdom in the care of patients with urinary problems at the end of life: a qualitative interview study.

    Science.gov (United States)

    Farrington, Naomi; Fader, Mandy; Richardson, Alison; Sartain, Samantha

    2015-10-01

    This study examined how nurses understand urinary problems at the end of life, and identified sources of evidence upon which they base their practice through semi-structured qualitative interviews. The aim was to decide whether research or interventions (such as formulation of best practice guidelines) could improve continence care at the end of life. There is little evidence in nursing literature to indicate how nurses should manage urinary problems at the end of life. Evidence is particularly lacking regarding the insertion of indwelling urinary catheters. This was an applied qualitative interview study which used the 'guided interview' approach. Twelve participants who worked in two hospital wards and one hospice were interviewed about management of patients with urinary problems approaching the end of life. The transcribed interviews were organised using the qualitative analysis software qsr NVivo version 10 (QSR International, Melbourne, Australia). Constant comparison was used to analyse the interviews. The patient and their family were a key concern of all interviewees. Participants focused on processes including: giving care, making decisions, managing uncertainty and assimilating knowledge. These processes are mediated by 'phronesis' or practical wisdom. Within each of the processes (giving care, making decisions, managing uncertainty and assimilating knowledge), participants approached each patient as an individual, using experience, patient wishes, available resources, clinical knowledge and advice from colleagues to provide care. A generalised set of guidelines on managing urinary problems at the end of life would probably not be useful. There is uncertainty about what constitutes best practice in specific areas of continence care at the end of life such as indwelling urinary catheter insertion. A careful approach is needed to ensure that the intellectual and moral knowledge that constitutes practical wisdom is shared and developed throughout teams.

  3. [Palliative care and end-of-life patients in emergency situations. Recommendations on optimization of out-patient care].

    Science.gov (United States)

    Wiese, C H R; Vagts, D A; Kampa, U; Pfeiffer, G; Grom, I-U; Gerth, M A; Graf, B M; Zausig, Y A

    2011-02-01

    At the end of life acute exacerbations of medical symptoms (e.g. dyspnea) in palliative care patients often result in emergency medical services being alerted. The goals of this study were to discuss cooperation between emergency medical and palliative care structures to optimize the quality of care in emergencies involving palliative care patients. For data collection an open discussion of the main topics by experts in palliative and emergency medical care was employed. Main outcome measures and recommendations included responses regarding current practices related to expert opinions and international literature sources. As the essential points of consensus the following recommendations for optimization of care were named: (1) integration of palliative care in the emergency medicine curricula for pre-hospital emergency physicians and paramedics, (2) development of outpatient palliative care, (3) integration of palliative care teams into emergency medical structures, (4) cooperation between palliative and emergency medical care, (5) integration of crisis intervention into outpatient palliative emergency medical care, (6) provision of emergency plans and emergency medical boxes, (7) provision of palliative crisis cards and do not attempt resuscitation (DNAR) orders, (8) psychosocial aspects concerning palliative emergencies and (9) definition of palliative patients and their special situation by the physician responsible for prior treatment. Prehospital emergency physicians are confronted with emergencies in palliative care patients every day. In the treatment of these emergencies there are potentially serious conflicts due to the different therapeutic concepts of palliative medical care and emergency medical services. This study demonstrates that there is a need for regulated criteria for the therapy of palliative patients and patients at the end of life in emergency situations. Overall, more clinical investigations concerning end-of-life care and unresponsive

  4. Multi-Cultural Long Term Care Nurses’ Perceptions of Factors Influencing Patient Dignity at the End of Life

    Science.gov (United States)

    Periyakoil, Vyjeyanthi S.; Stevens, Marguerite; Kraemer, Helena

    2012-01-01

    The goal of this mixed-methods study was to characterize the perceptions of multi-cultural long-term care nurses about patient dignity at the end-of-life (EOL). The study was conducted in a large, urban long-term care (LTC) facility. The participants were forty-five long-term care nurses and 26 terminally ill nursing home patients. Nurses completed an open-ended interview about their perceptions of the concept of dying with dignity and the data were analyzed using grounded theory methods. Main themes identified as promoting patient dignity at the EOL included treating them with respect, helping them prepare for their EOL, promoting shared decision making and providing high quality tenor of care. The nurses’ cultural and religious backgrounds influenced their perceptions of what constitutes dignity-conserving care. Foreign-born nurses stressed the need for end-of-life rituals but this was strikingly absent in the statements of US-born nurses. Foreign-born Catholic nurses stated that the dying experience should not be altered using analgesics to relieve suffering or by attempts to hasten death by forgoing curative therapy or by other means. Both nurses and terminally ill patients completed the Dignity Card-sort Tool (DCT). A comparison of the LTC nurses cohort to the terminally ill patient responses on the DCT revealed that the nurses felt that patient dignity was eroded when her/his wishes were not carried out and when s/he is treated without respect. In contrast, dying LTC patients felt that poor medical care and loss of ability to choose care options to be the most important factors leading to erosion of dignity. PMID:23496266

  5. Appraisal of literature reviews on end-of-life care for minority ethnic groups in the UK and a critical comparison with policy recommendations from the UK end-of-life care strategy

    Directory of Open Access Journals (Sweden)

    Pool Robert

    2011-06-01

    Full Text Available Abstract Background Evidence of low end-of-life (EoL care service use by minority ethnic groups in the UK has given rise to a body of research and a number of reviews of the literature. This article aims to review and evaluate literature reviews on minority ethnic groups and EoL care in the UK and assess their suitability as an evidence base for policy. Methods Systematic review. Searches were carried out in thirteen electronic databases, eight journals, reference lists, and grey literature. Reviews were included if they concerned minority ethnic groups and EoL care in the UK. Reviews were graded for quality and key themes identified. Results Thirteen reviews (2001-2009 met inclusion criteria. Seven took a systematic approach, of which four scored highly for methodological quality (a mean score of six, median seven. The majority of systematic reviews were therefore of a reasonable methodological quality. Most reviews were restricted by ethnic group, aspect of EoL care, or were broader reviews which reported relevant findings. Six key themes were identified. Conclusions A number of reviews were systematic and scored highly for methodological quality. These reviews provide a good reflection of the primary evidence and could be used to inform policy. The complexity and inter-relatedness of factors leading to low service use was recognised and reflected in reviews' recommendations for service improvement. Recommendations made in the UK End-of-Life Care Strategy were limited in comparison, and the Strategy's evidence base concerning minority ethnic groups was found to be narrow. Future policy should be embedded strongly in the evidence base to reflect the current literature and minimise bias.

  6. Appraisal of literature reviews on end-of-life care for minority ethnic groups in the UK and a critical comparison with policy recommendations from the UK end-of-life care strategy.

    Science.gov (United States)

    Evans, Natalie; Meñaca, Arantza; Andrew, Erin Vw; Koffman, Jonathan; Harding, Richard; Higginson, Irene J; Pool, Robert; Gysels, Marjolein

    2011-06-02

    Evidence of low end-of-life (EoL) care service use by minority ethnic groups in the UK has given rise to a body of research and a number of reviews of the literature. This article aims to review and evaluate literature reviews on minority ethnic groups and EoL care in the UK and assess their suitability as an evidence base for policy. Systematic review. Searches were carried out in thirteen electronic databases, eight journals, reference lists, and grey literature. Reviews were included if they concerned minority ethnic groups and EoL care in the UK. Reviews were graded for quality and key themes identified. Thirteen reviews (2001-2009) met inclusion criteria. Seven took a systematic approach, of which four scored highly for methodological quality (a mean score of six, median seven). The majority of systematic reviews were therefore of a reasonable methodological quality. Most reviews were restricted by ethnic group, aspect of EoL care, or were broader reviews which reported relevant findings. Six key themes were identified. A number of reviews were systematic and scored highly for methodological quality. These reviews provide a good reflection of the primary evidence and could be used to inform policy. The complexity and inter-relatedness of factors leading to low service use was recognised and reflected in reviews' recommendations for service improvement. Recommendations made in the UK End-of-Life Care Strategy were limited in comparison, and the Strategy's evidence base concerning minority ethnic groups was found to be narrow. Future policy should be embedded strongly in the evidence base to reflect the current literature and minimise bias.

  7. Music therapy for end-of-life care: An updated systematic review.

    Science.gov (United States)

    McConnell, Tracey; Scott, David; Porter, Sam

    2016-10-01

    Music therapy during palliative and end-of-life care is well established and positive benefits for patients have been reported. Assess the effectiveness of music therapy versus standard care alone or standard care in combination with other therapies for improving psychological, physiological and social outcomes among adult patients in any palliative care setting. In order to update an existing Cochrane systematic review, we searched MEDLINE, CINAHL, EMBASE, PsycINFO, CENTRAL, ClinicalTrials.gov register and Current Controlled Trials register to identify randomised or quasi-randomised controlled trials published between 2009 and April 2015. Nine electronic music therapy journals were searched from 2009 until April 2015, along with reference lists and contact was made with key experts in music therapy. Only studies published in English were eligible for inclusion. Two reviewers independently screened titles, abstracts, assessed relevant studies for eligibility, extracted data and judged risk of bias for included studies. Disagreements were resolved through discussion with a third reviewer. Data were synthesised in Revman using the random effects model. Heterogeneity was assessed using I(2). Three studies were included in the review. Findings suggest that music therapy may be effective for helping to reduce pain in palliative care patients (standard mean deviation = -0.42, 95% confidence interval = -0.68 to -0.17, p = 0.001). Available evidence did not support the use of music therapy to improve overall quality of life in palliative care. While this review suggests that music therapy may be effective for reducing pain, this is based on studies with a high risk of bias. Further high-quality research is required. © The Author(s) 2016.

  8. Establishing end-of-life boards for palliative care of patients with advanced diseases.

    Science.gov (United States)

    Masel, Eva K; Unseld, Matthias; Adamidis, Feroniki; Roider-Schur, Sophie; Watzke, Herbert H

    2018-04-01

    Interdisciplinary tumor board decisions improve the quality of oncological therapies, while no such boards exist for end-of-life (EOL) decisions. The aim of this study was to assess the willingness of hemato-oncological and palliative care professionals to develop and participate in EOL boards. An aim of an EOL board would be to establish an interdisciplinary and comprehensive care for the remaining lifetime of patients suffering from advanced incurable diseases. Staff from the interdisciplinary teams of all hemato-oncological and palliative care wards in Vienna were invited to anonymously participate in an online survey. 309 professionals responded. 91% respondents reported a need to establish an EOL board, 63% expressed their willingness to actively participate in an EOL board, and 25% were indecisive. Regarding patient presence, 50% voted for an EOL board in the presence of the patients, and 36% voted for an EOL board in the absence of the patients. 95% had the opinion that an EOL board could improve patient care in the last phase of life. 64% stated that the development of an EOL board would be worthwhile, while 28% did not see enough resources available at their institutions. Regarding the desired type of documentation, 61% voted for a centrally available EOL decision, and 31% supported an in-house-based documentation. 94% voted for the availability of an information folder about EOL care. The willingness of professionals to establish an EOL board was very high. Further steps should be taken to implement such boards to improve EOL care.

  9. Reflections on using biographical approaches in end-of-life care: dignity therapy as example.

    Science.gov (United States)

    Lindqvist, Olav; Threlkeld, Guinever; Street, Annette F; Tishelman, Carol

    2015-01-01

    The therapeutic potential of nonpharmacologic interventions using biographical approaches at the end of life (EoL) is being increasingly recognized, but less attention is paid to processes impeding realization of this potential. In this article, Swedish and Australian researchers reflect on and problematize experiences using one biographical approach, dignity therapy (DT), in EoL care in Sweden. We use this as an example, focusing on critical examination of the process of applying DT in practice, examining frictions experienced in recruiting participants, collecting the data, and creating a biography. We discuss issues regarding agency, which became evident in the recruitment process and choices made about participation, and the power differentials manifested in the interactive process of eliciting stories and crafting them into a final product. We also raise salient questions about how research and practice with biographical approaches in EoL care might better build on and further existing knowledge to better reflect the complexities of everyday life. © The Author(s) 2014.

  10. Communicating With Dying Patients and Their Families: Multimedia Training in End-of-Life Care.

    Science.gov (United States)

    Chappell, Phylliss M; Healy, Jennifer; Lee, Shuko; Medellin, Glen; Sanchez-Reilly, Sandra

    2017-08-01

    The need for end-of-life (EOL), high-impact education initiatives to prepare medical students to communicate with dying patients and their families and to cope with issues of death and dying, is well recognized. Third-year medical students (n = 224), during their ambulatory rotation, completed a multimedia EOL curriculum, which included pre-/posttests, an online case-based module, didactic presentation, and a tablet computer application designed to demonstrate the signs and symptoms seen in the last hours of life for families of dying patients. Pre- and posttests were compared using Pearson χ 2 or Fisher exact test, and improvement was measured by weighted κ coefficient. On preintervention surveys, the majority of students demonstrated positive attitudes toward the care of dying patients and their families. Despite this high pretest positive attitude, there was a statistically significant overall positive attitude change after the intervention. The lowest pretest positive attitudes and lowest posttest positive attitude shifts, although all statistically improved, involved addressing the thoughts and feelings of dying patients and in coping with their own emotional response. Medical students exposure to this multimedia EOL curriculum increases positive attitudes in caring for dying patients and their families.

  11. Death in the Digital Age: A Systematic Review of Information and Communication Technologies in End-of-Life Care.

    Science.gov (United States)

    Ostherr, Kirsten; Killoran, Peter; Shegog, Ross; Bruera, Eduardo

    2016-04-01

    End-of-life (EOL) communication plays a critical role in ensuring that patients receive care concordant with their wishes and experience high quality of life. As the baby boomer population ages, scalable models of end-of-life communication will be needed to ensure that patients receive appropriate care. Information and communication technologies (ICTs) may help address the needs of this generation; however, few resources exist to guide the use of ICTs in EOL care. The primary objective was to identify the ICTs being used in EOL communication. The secondary objective was to compare the effectiveness of different ICTs in EOL communication. The study was a systematic review, following Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. We systematically searched seven databases for experimental and observational studies on EOL communication between doctors and patients using ICTs, published in 1997-2013. The review identified 38 relevant articles. Eleven types of technology were identified: video, website, telephone, videoconferencing, e-mail, telemonitoring, Internet search, compact disc, fax, PalmPilot, and short message service (SMS) text messaging. ICTs were most commonly used to provide information or education, serve as decision aids, promote advance care planning (ACP), and relieve physical symptom distress. The use of ICTs in EOL care is a small but growing field of research. Additional research is needed to adapt older, analog technologies for use in the digital age. Many of the interventions discussed in this review do not take full advantage of the affordances of mobile, connected health ICTs. The growing evidence base for e-health applications in related fields should guide future interventions in EOL care.

  12. Associations Between End-of-Life Discussion Characteristics and Care Received Near Death: A Prospective Cohort Study

    Science.gov (United States)

    Mack, Jennifer W.; Cronin, Angel; Keating, Nancy L.; Taback, Nathan; Huskamp, Haiden A.; Malin, Jennifer L.; Earle, Craig C.; Weeks, Jane C.

    2012-01-01

    Purpose National guidelines recommend that discussions about end-of-life (EOL) care planning happen early for patients with incurable cancer. We do not know whether earlier EOL discussions lead to less aggressive care near death. We sought to evaluate the extent to which EOL discussion characteristics, such as timing, involved providers, and location, are associated with the aggressiveness of care received near death. Patients and Methods We studied 1,231 patients with stage IV lung or colorectal cancer in the Cancer Care Outcomes Research and Surveillance Consortium, a population- and health system–based prospective cohort study, who died during the 15-month study period but survived at least 1 month. Our main outcome measure was the aggressiveness of EOL care received. Results Nearly half of patients received at least one marker of aggressive EOL care, including chemotherapy in the last 14 days of life (16%), intensive care unit care in the last 30 days of life (9%), and acute hospital-based care in the last 30 days of life (40%). Patients who had EOL discussions with their physicians before the last 30 days of life were less likely to receive aggressive measures at EOL, including chemotherapy (P = .003), acute care (P EOL discussions are prospectively associated with less aggressive care and greater use of hospice at EOL. PMID:23150700

  13. Respecting autonomy in the end-of-life care of people with intellectual disabilities: a qualitative multiple-case study.

    NARCIS (Netherlands)

    Bekkema, N.; Veer, A.J.E. de; Hertogh, C.M.P.M.; Francke, A.L.

    2014-01-01

    Background: The aim of this article was to describe how caregivers and relatives shape respect for autonomy in the end-of-life care for people with intellectual disabilities (ID) and to discuss to what extent this corresponds with a relational concept of autonomy, such as described in care ethics.

  14. Social-cultural factors in end-of-life care in Belgium: A scoping of the research literature

    NARCIS (Netherlands)

    Andrew, E.V.; Cohen, J.; Evans, N.C.; Menaca, A.; Harding, R.; Higginson, I.; Pool, R.; Gysels, M.

    2013-01-01

    Background: As end-of-life (EoL) care expands across Europe and the world, service developments are increasingly studied. The sociocultural context in which such changes take place, however, is often neglected in research. Aim: To explore sociocultural factors in EoL care in Belgium as represented

  15. The Oklahoma Attorney General's Task Force report on the State of End-of-Life Health Care, 2005.

    Science.gov (United States)

    Edmondson, W A Drew

    2005-05-01

    This article includes the recommendations submitted by the 15 members of the Oklahoma Attorney General's Task Force in their Report on the State of End-of-Life Health Care. The task force was created on April 21, 2004, and their report was accepted by Attorney General W.A. Drew Edmondson at a press conference April 11, 2005. It has been forwarded to members of the Oklahoma Legislature, relevant state agencies and organizations with an invitation to join with members of the task force to continue efforts to improve end-of-life care for Oklahomans. Copies of the report are available upon request to the Office of Attorney General.

  16. Communication About Advance Directives and End-of-Life Care Options Among Internal Medicine Residents

    Science.gov (United States)

    Rhodes, Ramona L.; Tindall, Kate; Xuan, Lei; Paulk, M. Elizabeth; Halm, Ethan A.

    2015-01-01

    Background Despite increasing awareness about the importance of discussing end-of-life (EOL) care options with terminally ill patients and families, many physicians remain uncomfortable with these discussions. Objective The objective of the study was to examine perceptions of and comfort with EOL care discussions among a group of internal medicine residents and the extent to which comfort with these discussions has improved over time. Methods In 2013, internal medicine residents at a large academic medical center were asked to participate in an on-line survey that assessed their attitudes and experiences with discussing EOL care with terminally-ill patients. These results were compared to data from a similar survey residents in the same program completed in 2006. Results Eighty-three (50%) residents completed the 2013 survey. About half (52%) felt strongly that they were able to have open, honest discussions with patients and families, while 71% felt conflicted about whether CPR was in the patient’s best interest. About half (53%) felt strongly that it was okay for them to tell a patient/family member whether or not CPR was a good idea for them. Compared to 2006 respondents, the 2013 cohort felt they had more lectures about EOL communication, and had watched an attending have an EOL discussion more often. Conclusions Modest improvements were made over time in trainees’ exposure to EOL discussions; however, many residents remain uncomfortable and conflicted with having EOL care discussions with their patients. More effective training approaches in EOL communication are needed to train the next generation of internists. PMID:24418692

  17. Communication About Advance Directives and End-of-Life Care Options Among Internal Medicine Residents.

    Science.gov (United States)

    Rhodes, Ramona L; Tindall, Kate; Xuan, Lei; Paulk, M Elizabeth; Halm, Ethan A

    2015-05-01

    Despite increasing awareness about the importance of discussing end-of-life (EOL) care options with terminally ill patients and families, many physicians remain uncomfortable with these discussions. The objective of the study was to examine perceptions of and comfort with EOL care discussions among a group of internal medicine residents and the extent to which comfort with these discussions has improved over time. In 2013, internal medicine residents at a large academic medical center were asked to participate in an on-line survey that assessed their attitudes and experiences with discussing EOL care with terminally-ill patients. These results were compared to data from a similar survey residents in the same program completed in 2006. Eighty-three (50%) residents completed the 2013 survey. About half (52%) felt strongly that they were able to have open, honest discussions with patients and families, while 71% felt conflicted about whether CPR was in the patient's best interest. About half (53%) felt strongly that it was okay for them to tell a patient/family member whether or not CPR was a good idea for them. Compared to 2006 respondents, the 2013 cohort felt they had more lectures about EOL communication, and had watched an attending have an EOL discussion more often. Modest improvements were made over time in trainees' exposure to EOL discussions; however, many residents remain uncomfortable and conflicted with having EOL care discussions with their patients. More effective training approaches in EOL communication are needed to train the next generation of internists. © The Author(s) 2014.

  18. Enhancing the prospects for palliative care at the end of life: A statewide educational demonstration project to improve advance care planning.

    Science.gov (United States)

    Litzelman, Debra K; Cottingham, Ann H; Griffin, Wilma; Inui, Thomas S; Ivy, Steven S

    2016-12-01

    Although patients want to participate in discussions and decisions about their end-of-life care, studies show that providers frequently fail to invite them to explore advanced care preferences or goals for living. The purpose of our demonstration project was to provide education and coaching to individuals, health providers, and organizations across the state of Indiana intended to facilitate these conversations, documenting and honoring individuals' life goals and preferences for care during the final stages of life. Education and training engaged community members as well as healthcare providers to: (1) improve participant comfort and facility discussing end-of-life issues; (2) improve knowledge of healthcare choices, including palliative and hospice care; and (3) prepare all participants to explore and document personal values, life goals, and priorities as well as goals of care. Between January of 2013 and June of 2015, the team educated close to 5,000 participants. Participants' ratings of the quality and perceived usefulness of the educational events ranged from 4 to 5 (using a 5-point scale, with 5 = most effective). Participant comments were overwhelmingly favorable and indicated an intention to put the advance care planning resources, communication skills, knowledge of palliative and hospice care, and personal renewal techniques into practice. Participant motivation to foster advance care planning, discussions of palliative care, and end-of-life conversations was facilitated by the reframing of these conversations as identifying goals of care and priorities for living well during an important stage of life. Successful strategies included helping providers and patients to adopt a broader meaning for "sustaining hope" (not for cure, but for engaging in highly valued activities), developing provider communication skills and comfort in initiating potentially difficult discussions, engaging a new community health workforce who will develop trusting

  19. Can specially trained community care workers effectively support patients and their families in the home setting at the end of life?

    Science.gov (United States)

    Poulos, Roslyn G; Harkin, Damian; Poulos, Christopher J; Cole, Andrew; MacLeod, Rod

    2018-03-01

    Surveys indicate that many Australians would prefer to die at home, but relatively few do. Recognising that patients and their families may not have the support they need to enable end-of-life care at home, a consortium of care providers developed, and received funding to trial, the Palliative Care Home Support Program (PCHSP) across seven health districts in New South Wales, Australia. The programme aimed to supplement end-of-life care in the home provided by existing multidisciplinary community palliative care teams, with specialist supportive community care workers (CCWs). An evaluation of the service was undertaken, focussing on the self-reported impact of the service on family carers (FCs), with triangulation of findings from community palliative care teams and CCWs. Service evaluation data were obtained through postal surveys and/or qualitative interviews with FCs, community palliative care teams and CCWs. FCs also reported the experience of their loved one based on 10 items drawn from the Quality of Death and Dying Questionnaire (QODD). Thematic analysis of surveys and interviews found that the support provided by CCWs was valued by FCs for: enabling choice (i.e. to realise end-of-life care in the home); providing practical assistance ("hands-on"); and for emotional support and reassurance. This was corroborated by community palliative care teams and CCWs. Responses by FCs on the QODD items indicated that in the last week of life, effective control of symptoms was occurring and quality of life was being maintained. This study suggests that satisfactory outcomes for patients and their families who wish to have end-of-life care in the home can be enabled with the additional support of specially trained CCWs. A notable benefit of the PCHSP model, which provided specific palliative care vocational training to an existing community care workforce, was a relatively rapid increase in the palliative care workforce across the state. © 2017 John Wiley & Sons Ltd.

  20. Experiences of non-specialist nurses caring for patients and their significant others undergoing transitions during palliative end-of-life cancer care

    DEFF Research Database (Denmark)

    Thorn, Hrønn; Uhrenfeldt, Lisbeth

    2017-01-01

    electronic databases and seven websites were searched. Methodological quality: Methodological validity of the qualitative papers was assessed independently by two reviewers using the standardized critical appraisal instruments from the Joanna Briggs Institute Qualitative Assessment and Review Instrument (JBI...... knowledge and personal growth. Objective/question: What are non-specialist nurses’ experiences when providing palliative end-of-life cancer care that involves the psychosocial and existential transitions of their patients and significant others? Inclusion criteria Types of participants: The current review...... considered studies that included a description of the experiences of non-specialist trained registered nurses (RNs) working in non-specialist wards. Phenomena of interest: The current review considered studies that investigated experiences of RNs when providing palliative end-of-life cancer care...

  1. Palliative sedation in end-of-life care and survival: a systematic review.

    Science.gov (United States)

    Maltoni, Marco; Scarpi, Emanuela; Rosati, Marta; Derni, Stefania; Fabbri, Laura; Martini, Francesca; Amadori, Dino; Nanni, Oriana

    2012-04-20

    Palliative sedation is a clinical procedure aimed at relieving refractory symptoms in patients with advanced cancer. It has been suggested that sedative drugs may shorten life, but few studies exist comparing the survival of sedated and nonsedated patients. We present a systematic review of literature on the clinical practice of palliative sedation to assess the effect, if any, on survival. A systematic review of literature published between January 1980 and December 2010 was performed using MEDLINE and EMBASE databases. Search terms included palliative sedation, terminal sedation, refractory symptoms, cancer, neoplasm, palliative care, terminally ill, end-of-life care, and survival. A manual search of the bibliographies of electronically identified articles was also performed. Eleven published articles were identified describing 1,807 consecutive patients in 10 retrospective or prospective nonrandomized studies, 621 (34.4%) of whom were sedated. One case-control study was excluded from prevalence analysis. The most frequent reason for sedation was delirium in the terminal stages of illness (median, 57.1%; range, 13.8% to 91.3%). Benzodiazepines were the most common drug category prescribed. Comparing survival of sedated and nonsedated patients, the sedation approach was not shown to be associated with worse survival. Even if there is no direct evidence from randomized clinical trials, palliative sedation, when appropriately indicated and correctly used to relieve unbearable suffering, does not seem to have any detrimental effect on survival of patients with terminal cancer. In this setting, palliative sedation is a medical intervention that must be considered as part of a continuum of palliative care.

  2. Living and dying: responsibility for end-of-life care in care homes without on-site nursing provision - a prospective study.

    Science.gov (United States)

    Handley, Melanie; Goodman, Claire; Froggatt, Katherine; Mathie, Elspeth; Gage, Heather; Manthorpe, Jill; Barclay, Stephen; Crang, Clare; Iliffe, Steve

    2014-01-01

    The aim of the study was to describe the expectations and experiences of end-of-life care of older people resident in care homes, and how care home staff and the healthcare practitioners who visited the care home interpreted their role. A mixed-method design was used. The everyday experience of 121 residents from six care homes in the East of England were tracked; 63 residents, 30 care home staff with assorted roles and 19 National Health Service staff from different disciplines were interviewed. The review of care home notes demonstrated that residents had a wide range of healthcare problems. Length of time in the care homes, functional ability or episodes of ill-health were not necessarily meaningful indicators to staff that a resident was about to die. General Practitioner and district nursing services provided a frequent but episodic service to individual residents. There were two recurring themes that affected how staff engaged with the process of advance care planning with residents; 'talking about dying' and 'integrating living and dying'. All participants stated that they were committed to providing end-of-life care and supporting residents to die in the care home, if wanted. However, the process was complicated by an ongoing lack of clarity about roles and responsibilities in providing end-of-life care, doubts from care home and primary healthcare staff about their capacity to work together when residents' trajectories to death were unclear. The findings suggest that to support this population, there is a need for a pattern of working between health and care staff that can encourage review and discussion between multiple participants over sustained periods of time. © 2013 John Wiley & Sons Ltd.

  3. Exploring family experiences of nursing aspects of end-of-life care in the ICU: A qualitative study.

    Science.gov (United States)

    Noome, Marijke; Dijkstra, Boukje M; van Leeuwen, Evert; Vloet, Lilian C M

    2016-04-01

    The aim of this study was to examine the experience(s) of family with the nursing aspects of End-of-life care in the intensive care unit after a decision to end life-sustaining treatment, and to describe what nursing care was most appreciated and what was lacking. A phenomenological approach including inductive thematic analysis was used. Twenty-six family members of deceased critically ill-patients were interviewed within two months after the patient's death about their experiences with nursing aspects of end-of-life care in the intensive care unit. Most family members experienced nursing contribution to end-of-life care of the patient and themselves, especially supportive care. Families mentioned the following topics: Communication between intensive care nurses, critically ill patients and family; Nursing care for critically ill patients; Nursing care for families of critically ill patients; Pre-conditions. Families appreciated that intensive care nurses were available at any time and willing to answer questions. But care was lacking because families had for example, a sense of responsibility for obtaining information, they had problems to understand their role in the decision-making process, and were not invited by nurses to participate in the care. Most family appreciated the nursing EOLC they received, specifically the nursing care given to the patient and themselves. Some topics needed more attention, like information and support for the family. Copyright © 2016 Elsevier Ltd. All rights reserved.

  4. The quality of intensive care unit nurse handover related to end of life: a descriptive comparative international study.

    Science.gov (United States)

    Ganz, Freda DeKeyser; Endacott, Ruth; Chaboyer, Wendy; Benbinishty, Julie; Ben Nun, Maureen; Ryan, Helen; Schoter, Amanda; Boulanger, Carole; Chamberlain, Wendy; Spooner, Amy

    2015-01-01

    Quality ICU end-of-life-care has been found to be related to good communication. Handover is one form of communication that can be problematic due to lost or omitted information. A first step in improving care is to measure and describe it. The objective of this study was to describe the quality of ICU nurse handover related to end-of-life care and to compare the practices of different ICUs in three different countries. This was a descriptive comparative study. The study was conducted in seven ICUs in three countries: Australia (1 unit), Israel (3 units) and the UK (3 units). A convenience sample of 157 handovers was studied. Handover quality was rated based on the ICU End-of-Life Handover tool, developed by the authors. The highest levels of handover quality were in the areas of goals of care and pain management while lowest levels were for legal issues (proxy and advanced directives) related to end of life. Significant differences were found between countries and units in the total handover score (country: F(2,154)=25.97, p=studied. The total score was higher when quality of care might be deemed at greater risk (if the nurses did not know the patient or the patient was expected to die), indicating that nurses were exercising some form of discretionary decision making around handover communication; thus validating the measurement tool. Copyright © 2014. Published by Elsevier Ltd.

  5. Culturally Relevant Palliative and End-of-Life Care for U.S. Indigenous Populations: An Integrative Review.

    Science.gov (United States)

    Isaacson, Mary J; Lynch, Anna R

    2018-03-01

    American Indians/Alaska Natives (AIs/ANs) have higher rates of chronic illness and lack access to palliative/end-of-life (EOL) care. This integrative review ascertained the state of the science on culturally acceptable palliative/EOL care options for Indigenous persons in the United States. Databases searched: CINAHL, PubMed/MEDLINE, SocINDEX, PsycINFO, PsycARTICLES, ERIC, Health Source: Nursing/Academic Edition, and EBSCO Discovery Service 1880s-Present. Key terms used: palliative care, EOL care, and AI/AN. peer-reviewed articles published in English. Findings/Results: Twenty-nine articles were identified, 17 remained that described culturally specific palliative/EOL care for AIs/ANs. Synthesis revealed four themes: Communication, Cultural Awareness/Sensitivity, Community Guidance for Palliative/EOL Care Programs, Barriers and two subthemes: Trust/Respect and Mistrust. Limitations are lack of research funding, geographic isolation, and stringent government requirements. Palliative/EOL care must draw on a different set of skills that honor care beyond cure provided in a culturally sensitive manner.

  6. Reasons, considerations, difficulties and documentation of end-of-life decisions in European intensive care units: the ETHICUS Study

    DEFF Research Database (Denmark)

    Sprung, C.L.; Woodcock, T.; Sjokvist, P.

    2008-01-01

    Objective: To evaluate physicians' reasoning, considerations and possible difficulties in end-of-life decision-making for patients in European intensive care units (ICUs). Design: A prospective observational study. Setting: Thirty-seven ICUs in 17 European countries. Patients and participants...... for, considerations in, and difficulties with end-of-life decision-making was germane in each case as it arose. Overall, 2,134 (69%) of the decisions were documented in the medical record, with inter-regional differences in documentation practice. Primary reasons given by physicians for the decision......: A total of 3,086 patients for whom an end-of-life decision was taken between January 1999 and June 2000. The dataset excludes patients who died after attempts at cardiopulmonary resuscitation and brain-dead patients. Measurements and results: Physicians indicated which of a pre-determined set of reasons...

  7. Transition: the experiences of support workers caring for people with learning disabilities towards the end of life.

    Science.gov (United States)

    O'Sullivan, Gavan; Harding, Richard

    2017-06-01

    This research aims to provide a better understanding of the experience of support workers, as paid carers, caring for adults with learning disabilities (LDs) nearing the end of life in residential settings. In the past 100 years, people with LDs (also referred to as 'learning difficulty', 'mental retardation' and 'intellectual disability' internationally) are living longer with life expectancy approaching the population norm and more likely to die from diseases such as cancer, respiratory and vascular diseases. Community-based supported accommodation has become the foremost provider for people with LDs in their late 30 s or over in the UK. In the midst of the transition from living to dying for people with LDs, and even postdeath, the needs of support workers are often neglected against a background where most are unqualified, often with little experience of death and dying event, and with limited access to clinical supervision and education. 3 focus groups involving 13 support workers were conducted at 3 independent service provider settings for people with LDs in London. In recounting the experiences of these groups of support workers, 6 themes are described: strong emotional bond and identification; collaboration with other services; training issues around the extended role; support within the organisation; relationship with family/other residents; and grieving the 'loss'. Although support workers play a key role in meeting the end-of-life care needs of people with LDs in residential settings, their own needs are often neglected. There are still significant gaps in understanding these needs and practice development in this area. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

  8. Education and training to enhance end-of-life care for nursing home staff: a systematic literature review.

    Science.gov (United States)

    Anstey, Sally; Powell, Tom; Coles, Bernadette; Hale, Rachel; Gould, Dinah

    2016-09-01

    The delivery of end-of-life care in nursing homes is challenging. This situation is of concern as 20% of the population die in this setting. Commonly reported reasons include limited access to medical care, inadequate clinical leadership and poor communication between nursing home and medical staff. Education for nursing home staff is suggested as the most important way of overcoming these obstacles. To identify educational interventions to enhance end-of-life care for nursing home staff and to identify types of study designs and outcomes to indicate success and benchmark interventions against recent international guidelines for education for palliative and end-of-life care. Thirteen databases and reference lists of key journals were searched from the inception of each up to September 2014. Included studies were appraised for quality and data were synthesised thematically. Twenty-one studies were reviewed. Methodological quality was poor. Education was not of a standard that could be expected to alter clinical behaviour and was evaluated mainly from the perspectives of staff: self-reported increase in knowledge, skills and confidence delivering care rather than direct evidence of impact on clinical practice and patient outcomes. Follow-up was often short term, and despite sound economic arguments for delivering effective end-of-life care to reduce burden on the health service, no economic analyses were reported. There is a clear and urgent need to design educational interventions that have the potential to improve end-of-life care in nursing homes. Robust evaluation of these interventions should include impact on residents, families and staff and include economic analysis. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/

  9. Into the Wild Country: Epistemic Issues in Professional Guidelines for Palliative Sedation in End-of-Life Care

    Science.gov (United States)

    Wackers, Ger

    2015-01-01

    End-of-life care is an important object of governance. Using the linguistic notions of polysemy, metaphorical blending and counterfactual reasoning, this paper critically examines epistemic issues in professional guidelines for palliative sedation of the dying. As a last resort option, palliative sedation is described as the intentional,…

  10. Systematic review of the primary research on minority ethnic groups and end-of-life care from the United Kingdom

    NARCIS (Netherlands)

    Evans, N.; Meñaca, A.; Andrew, E.V.W.; Koffman, J.; Harding, R.; Higginson, I.J.; Pool, R.; Gysels, M.

    2012-01-01

    Context Patients from minority ethnic groups experience lower rates of referrals to end-of-life (EoL) care services, higher levels of dissatisfaction with services, and perceive some services as culturally inappropriate. Objectives To systematically review original studies of minority ethnic groups

  11. Systematic Review of the Primary Research on Minority Ethnic Groups and End-of-Life Care From the United Kingdom

    NARCIS (Netherlands)

    Evans, N.C.; Menaca, A.; Andrew, E.V.; Koffman, J.; Harding, R.; Higginson, I.J.; Pool, R.; Gysels, M.

    2012-01-01

    Context: Patients from minority ethnic groups experience lower rates of referrals to end-of-life (EoL) care services, higher levels of dissatisfaction with services, and perceive some services as culturally inappropriate. Objectives: To systematically review original studies of minority ethnic

  12. The feasibility of a train-the-trainer approach to end of life care training in care homes: an evaluation.

    Science.gov (United States)

    Mayrhofer, Andrea; Goodman, Claire; Smeeton, Nigel; Handley, Melanie; Amador, Sarah; Davies, Sue

    2016-01-22

    The ABC End of Life Education Programme trained approximately 3000 care home staff in End of Life (EoL) care. An evaluation that compared this programme with the Gold Standards Framework found that it achieved equivalent outcomes at a lower cost with higher levels of staff satisfaction. To consolidate this learning, a facilitated peer education model that used the ABC materials was piloted. The goal was to create a critical mass of trained staff, mitigate the impact of staff turnover and embed EoL care training within the organisations. The aim of the study was to evaluate the feasibility of using a train the trainer (TTT) model to support EoL care in care homes. A mixed method design involved 18 care homes with and without on-site nursing across the East of England. Data collection included a review of care home residents' characteristics and service use (n = 274), decedents' notes n = 150), staff interviews (n = 49), focus groups (n = 3), audio diaries (n = 28) and observations of workshops (n = 3). Seventeen care homes participated. At the end of the TTT programme 28 trainers and 114 learners (56% of the targeted number of learners) had been trained (median per home 6, range 0-13). Three care homes achieved or exceeded the set target of training 12 learners. Trainers ranged from senior care staff to support workers and administrative staff. Results showed a positive association between care home stability, in terms of leadership and staff turnover, and uptake of the programme. Care home ownership, type of care home, size of care home, previous training in EoL care and resident characteristics were not associated with programme completion. Working with facilitators was important to trainers, but insufficient to compensate for organisational turbulence. Variability of uptake was also linked to management support, programme fit with the trainers' roles and responsibilities and their opportunities to work with staff on a daily basis. When

  13. Nursing Home Physicians' Assessments of Barriers and Strategies for End-of-Life Care in Norway and The Netherlands.

    Science.gov (United States)

    Fosse, Anette; Zuidema, Sytse; Boersma, Froukje; Malterud, Kirsti; Schaufel, Margrethe Aase; Ruths, Sabine

    2017-08-01

    Working conditions in nursing homes (NHs) may hamper teamwork in providing quality end-of-life (EOL) care, especially the participation of NH physicians. Dutch NH physicians are specialists or trainees in elderly care medicine with NHs as the main workplace, whereas in Norway, family physicians usually work part time in NHs. Thus, we aimed at assessing and comparing NH physicians' perspectives on barriers and strategies for providing EOL care in NHs in Norway and in The Netherlands. A cross-sectional study using an electronic questionnaire was conducted in 2015. All NH physicians in Norway (approximately 1200-1300) were invited to participate; 435 participated (response rate approximately 35%). Of the total 1664 members of the Dutch association of elderly care physicians approached, 244 participated (response rate 15%). We explored NH physicians' perceptions of organizational, educational, financial, legal, and personal prerequisites for quality EOL care. Differences between the countries were compared using χ 2 test and t-test. Most respondents in both countries reported inadequate staffing, lack of skills among nursing personnel, and heavy time commitment for physicians as important barriers; this was more pronounced among Dutch respondents. Approximately 30% of the respondents in both countries reported their own lack of interest in EOL care as an important barrier. Suggested improvement strategies were routines for involvement of patients' family, pain- and symptom assessment protocols, EOL care guidelines, routines for advance care planning, and education in EOL care for physicians and nursing staff. Inadequate staffing levels, as well as lack of competence, time, and interest emerge as important barriers to quality EOL care according to Dutch and Norwegian NH physicians. Their perspectives were mostly similar, despite large educational and organizational differences. Key strategies for improving EOL care in their facilities comprise education and

  14. Medical futility and end-of-life care | Sidler | South African Medical ...

    African Journals Online (AJOL)

    treating physician is responsible for guiding this process by demonstrating sensitivity and compassion, respecting the values of patients, their families and the medical staff. The need for training to equip medical staff to take responsibility as empathetic participants in end-of-life decision-making is underscored. South African ...

  15. Clinical priorities, barriers and solutions in end-of-life cancer care research across Europe. Report from a workshop

    DEFF Research Database (Denmark)

    Sigurdardottir, Katrin Ruth; Haugen, Dagny Faksvåg; van der Rijt, Carin C D

    2010-01-01

    The PRISMA project is aiming to co-ordinate research priorities, measurement and practice in end-of-life (EOL) care in Europe. As part of PRISMA we undertook a questionnaire survey and a subsequent workshop to (1) identify clinical priorities for EOL care research in Europe and propose a future...... research agenda and (2) identify barriers to EOL care research, and possibilities and solutions to improve the research....

  16. Patient-centeredness to anticipate and organize an end-of-life project for patients receiving at-home palliative care: a phenomenological study.

    Science.gov (United States)

    Oude Engberink, Agnès; Badin, Mélanie; Serayet, Philippe; Pavageau, Sylvain; Lucas, François; Bourrel, Gérard; Norton, Joanna; Ninot, Grégory; Senesse, Pierre

    2017-02-23

    The development of end-of-life primary care is a socio-medical and ethical challenge. However, general practitioners (GPs) face many difficulties when initiating appropriate discussion on proactive shared palliative care. Anticipating palliative care is increasingly important given the ageing population and is an aim shared by many countries. We aimed to examine how French GPs approached and provided at-home palliative care. We inquired about their strategy for delivering care, and the skills and resources they used to devise new care strategies. Twenty-one GPs from the South of France recruited by phone according to their various experiences of palliative care agreed to participate. Semi-structured interview transcripts were examined using a phenomenological approach inspired by Grounded theory, and further studied with semiopragmatic analysis. Offering palliative care was perceived by GPs as a moral obligation. They felt vindicated in a process rooted in the paradigm values of their profession. This study results in two key findings: firstly, their patient-centred approach facilitated the anticipatory discussions of any potential event or intervention, which the GPs openly discussed with patients and their relatives; secondly, this approach contributed to build an "end-of-life project" meeting patients' wishes and needs. The GPs all shared the idea that the end-of-life process required human presence and recommended that at-home care be coordinated and shared by multi-professional referring teams. The main tenets of palliative care as provided by GPs are a patient-centred approach in the anticipatory discussion of potential events, personalized follow-up with referring multi-professional teams, and the collaborative design of an end-of-life project meeting the aspirations of the patient and his or her family. Consequently, coordination strategies involving specialized teams, GPs and families should be modelled according to the specificities of each care system.

  17. Euthanasia embedded in palliative care. Responses to essentialistic criticisms of the Belgian model of integral end-of-life care.

    Science.gov (United States)

    Bernheim, Jan L; Raus, Kasper

    2017-08-01

    The Belgian model of 'integral' end-of-life care consists of universal access to palliative care (PC) and legally regulated euthanasia. As a first worldwide, the Flemish PC organisation has embedded euthanasia in its practice. However, some critics have declared the Belgian-model concepts of 'integral PC' and 'palliative futility' to fundamentally contradict the essence of PC. This article analyses the various essentialistic arguments for the incompatibility of euthanasia and PC. The empirical evidence from the euthanasia-permissive Benelux countries shows that since legalisation, carefulness (of decision making) at the end of life has improved and there have been no significant adverse 'slippery slope' effects. It is problematic that some critics disregard the empirical evidence as epistemologically irrelevant in a normative ethical debate. Next, rejecting euthanasia because its prevention was a founding principle of PC ignores historical developments. Further, critics' ethical positions depart from the PC tenet of patient centeredness by prioritising caregivers' values over patients' values. Also, many critics' canonical adherence to the WHO definition of PC, which has intention as the ethical criterion is objectionable. A rejection of the Belgian model on doctrinal grounds also has nefarious practical consequences such as the marginalisation of PC in euthanasia-permissive countries, the continuation of clandestine practices and problematic palliative sedation until death. In conclusion, major flaws of essentialistic arguments against the Belgian model include the disregard of empirical evidence, appeals to canonical and questionable definitions, prioritisation of caregiver perspectives over those of patients and rejection of a plurality of respectable views on decision making at the end of life. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.

  18. Healthy End of Life Project (HELP): a progress report on implementing community guidance on public health palliative care initiatives in Australia.

    Science.gov (United States)

    Grindrod, Andrea; Rumbold, Bruce

    2018-04-01

    Contemporary end of life care policies propose increasing community capacity by developing sustainable skills, policies, structures, and resources to support members of a community in caring for each other at the end of life. Public health approaches to palliative care provide strategies to bring this about. Practical implementation can however be ineffective, principally due to failures to grasp the systemic nature of public health interventions, or to ensure that programs are managed and owned by community members, not the professionals who may have introduced them. This article outlines a comprehensive community development project that identifies local end of life needs and meets them through the efficient use of community resources. The project is the product of a three-phase enquiry. The first phase, carried out in a local community, examined carers' experiences of home-based dying, the networks that supported them during care, and broader community networks with the potential to extend care. Data were collected through in-depth research interviews, focus groups and consultation with a community research reference group. Findings were key issues to be targeted by a local community development strategy. In the second phase, these local findings were compared with other practice accounts to identify themes common to many contexts. A public health palliative care framework was then used to produce an evidence-informed community development model for end of life care. The third phase involves implementing and evaluating this model in different Australian contexts. A major theme emerging in phase one of the enquiry was the reluctance of carers to ask for, or even accept, offers of help from family, friends and community networks despite their evident need for support while providing end of life care at home. Others' willingness to provide support was thus hindered by uncertainty about what to offer, and concern about infringing on people's privacy. To develop

  19. Strange Bedfellows No More: How Integrated Stem-Cell Transplantation and Palliative Care Programs Can Together Improve End-of-Life Care.

    Science.gov (United States)

    Levine, Deena R; Baker, Justin N; Wolfe, Joanne; Lehmann, Leslie E; Ullrich, Christina

    2017-09-01

    In the intense, cure-oriented setting of hematopoietic stem-cell transplantation (HSCT), delivery of high-quality palliative and end-of-life care is a unique challenge. Although HSCT affords patients a chance for cure, it carries a significant risk of morbidity and mortality. During HSCT, patients usually experience high symptom burden and a significant decrease in quality of life that can persist for long periods. When morbidity is high and the chance of cure remote, the tendency after HSCT is to continue intensive medical interventions with curative intent. The nature of the complications and overall condition of some patients may render survival an unrealistic goal and, as such, continuation of artificial life-sustaining measures in these patients may prolong suffering and preclude patient and family preparation for end of life. Palliative care focuses on the well-being of patients with life-threatening conditions and their families, irrespective of the goals of care or anticipated outcome. Although not inherently at odds with HSCT, palliative care historically has been rarely offered to HSCT recipients. Recent evidence suggests that HSCT recipients would benefit from collaborative efforts between HSCT and palliative care services, particularly when initiated early in the transplantation course. We review palliative and end-of-life care in HSCT and present models for integrating palliative care into HSCT care. With open communication, respect for roles, and a spirit of collaboration, HSCT and palliative care can effectively join forces to provide high-quality, multidisciplinary care for these highly vulnerable patients and their families.

  20. Comparative Effectiveness of Usual Source of Care Approaches to Improve End-of-Life Outcomes for Children With Intellectual Disability.

    Science.gov (United States)

    Lindley, Lisa C; Cozad, Melanie J

    2017-09-01

    Children with intellectual disability (ID) are at risk for adverse end-of-life outcomes including high emergency room utilization and hospital readmissions, along with low hospice enrollment. The objective of this study was to compare the effectiveness of usual source of care approaches to improve end-of-life outcomes for children with ID. We used longitudinal California Medicaid claims data. Children were included who were 21 years with fee-for-service Medicaid claims, died between January 1, 2007, and December 31, 2010, and had a moderate-to-profound ID diagnosis. End-of-life outcomes (i.e., hospice enrollment, emergency room utilization, hospital readmissions) were measured via claims data. Our treatments were usual source of care (USC) only vs. usual source of care plus targeted case management (USC plus TCM). Using instrumental variable analysis, we compared the effectiveness of treatments on end-of-life outcomes. Ten percent of children with ID enrolled in hospice, 73% used the emergency room, and 20% had three or more hospital admissions in their last year of life. USC plus TCM relative to USC only had no effect on hospice enrollment; however, it significantly reduced the probability of emergency room utilization (B = -1.29, P life outcomes for children with ID. Further study of the extent of UCS and TCM involvement in reducing emergency room utilization and hospital readmissions at end of life is needed. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  1. Decision-making in end of life care. Are we really playing together in the same team?

    Science.gov (United States)

    Lomero-Martínez, M M; Jiménez-Herrera, M F; Bodí-Saera, M A; Llauradó-Serra, M; Masnou-Burrallo, N; Oliver-Juan, E; Sandiumenge-Camps, A

    2018-05-18

    Limitation of life-sustaining treatment is increasingly common in critical care units, and controlled donation after circulatory death is starting to be included as an option within patient care plans. Lack of knowledge and misunderstandings can place a barrier between healthcare professionals. To determine the perceptions, knowledge and attitudes of physicians and nurses working in intensive care units regarding Limitation of life-sustaining treatment and controlled donation after circulatory death. Cross-sectional study carried out in 13 Spanish hospitals by means of an ad hoc questionnaire. Contingency tables, Pearson's chi-squared test, Student's t-test and the Mann-Whitney u-test were used to carry out descriptive, bivariate and multivariate statistical analyses of responses. Although Limitation of life-sustaining treatment is a widespread practice, the survey revealed that nurses feel excluded from the development of protocols and the decision-making process, whilst the perception of physicians is that they have greater knowledge of the topic, and decisions are reached in consensus. Multi-disciplinary training programmes can help critical healthcare providers to work together with greater coordination, thus benefitting patients and their next of kin by providing excellent end-of-life care. Copyright © 2018 Sociedad Española de Enfermería Intensiva y Unidades Coronarias (SEEIUC). Publicado por Elsevier España, S.L.U. All rights reserved.

  2. Please Ask Gently: Using Culturally Targeted Communication Strategies to Initiate End-of-Life Care Discussions With Older Chinese Americans.

    Science.gov (United States)

    Chi, Han-Lin; Cataldo, Janine; Ho, Evelyn Y; Rehm, Roberta S

    2018-01-01

    Health-care providers (HCPs) find facilitating end-of-life (EOL) care discussions challenging, especially with patients whose ethnicities differ from their own. Currently, there is little guidance on how to initiate and facilitate such discussions with older Chinese Americans (≥55 years) and their families. To explore communication strategies for HCPs to initiate EOL care discussions with older Chinese Americans in the San Francisco Bay Area. This qualitative (focused) ethnographic study included field observations and individual semistructured interviews with 14 community-dwelling older Chinese Americans who lived independently at home, 9 adult children, and 7 HCPs. Responses were analyzed using open coding, memos, and comparison across participants. The study participants emphasized the importance of assessing readiness for early EOL care discussions. All recommended using indirect communication approaches to determine older Chinese Americans' readiness. Indirect communication can be culturally targeted and applied at both system-wide (ie, health-care system) and individual (ie, HCP) levels. To institutionalize the practice, health-care facilities should implement EOL care discussion inquiries as part of routine during check-in or intake questionnaires. In individual practice, using depersonalized communication strategies to initiate the discussion was recommended to determine older Chinese Americans' readiness. Assessing readiness should be an essential and necessary action for early EOL care discussions. Culturally targeted assessment of older Chinese Americans includes using indirect communication approaches to initiate an EOL care discussion to determine their readiness. In addition to health-care system integration, providers should implement and evaluate proposed EOL discussion initiation prompts with their older Chinese American patients.

  3. Sedation at the end of life - a nation-wide study in palliative care units in Austria.

    Science.gov (United States)

    Schur, Sophie; Weixler, Dietmar; Gabl, Christoph; Kreye, Gudrun; Likar, Rudolf; Masel, Eva Katharina; Mayrhofer, Michael; Reiner, Franz; Schmidmayr, Barbara; Kirchheiner, Kathrin; Watzke, Herbert Hans

    2016-05-14

    Sedation is used to an increasing extent in end-of-life care. Definitions and indications in this field are based on expert opinions and case series. Little is known about this practice at palliative care units in Austria. Patients who died in Austrian palliative care units between June 2012 and June 2013 were identified. A predefined set of baseline characteristics and information on sedation during the last two weeks before death were obtained by reviewing the patients' charts. The data of 2414 patients from 23 palliative care units were available for analysis. Five hundred two (21 %) patients received sedation in the last two weeks preceding their death, 356 (71 %) received continuous sedation until death, and 119 (24 %) received intermittent sedation. The median duration of sedation was 48 h (IQR 10-72 h); 168 patients (34 %) were sedated for less than 24 h. Indications for sedation were delirium (51 %), existential distress (32 %), dyspnea (30 %), and pain (20 %). Midazolam was the most frequently used drug (79 %), followed by lorazepam (13 %), and haloperidol (10 %). Sedated patients were significantly younger (median age 67 years vs. 74 years, p ≤ 0.001, r = 0.22), suffered more often from an oncological disease (92 % vs. 82 %, p ≤ 0.001, φ = 0.107), and were hospitalized more frequently (94 % vs. 76 %, p ≤ 0.001, φ = 0.175). The median number of days between admission to a palliative care ward/mobile palliative care team and death did not differ significantly in sedated versus non-sedated patients (10 vs. 9 days; p = 0.491). This study provides insights into the practice of end-of-life sedation in Austria. Critical appraisal of these data will serve as a starting point for the development of nation-wide guidelines for palliative sedation in Austria.

  4. Spiritual perspectives and practices at the end-of-life: A review of the major world religions and application to palliative care

    Directory of Open Access Journals (Sweden)

    Bauer-Wu S

    2007-01-01

    Full Text Available Palliative care professionals promote well-being and ease suffering at the end-of-life through holistic care that addresses physical, emotional, social and spiritual needs. The ways that individuals cope with serious illness and prepare for death are often done so within a religious context. Therefore, it is essential that palliative care practitioners are sensitive to and have an appreciation of different religious perspectives and rituals to meet the unique needs of their patients and families. This paper provides a brief overview of the five major world religions - Buddhism, Christianity, Hinduism, Islam and Judaism - with particular emphasis of the respective perspectives on suffering, death and afterlife. Despite wide variation in these traditions, an understanding of common rituals surrounding death, funerals and bereavement can improve care for patients, families and communities facing the end-of-life.

  5. Healthcare professionals' perspectives on delivering end-of-life care within acute hospital trusts: a qualitative study.

    Science.gov (United States)

    Reid, Colette; Gibbins, Jane; Bloor, Sophia; Burcombe, Melanie; McCoubrie, Rachel; Forbes, Karen

    2015-12-01

    The quality of end-of-life (EOL) care in acute hospitals is variable and interventions to improve this care, such as EOL care pathways, are not always used. The underlying reasons for this variability are not fully understood. We explored healthcare professionals' views on delivering EOL care within an acute hospital trust in the South West of England. We employed qualitative methods (focus groups, in-depth interviews and questerviews) within a study investigating the impact of a simple EOL tool on the care of dying patients. We invited a range of staff of all grades with experience in caring for dying patients from medicine, surgery and care of the elderly teams to participate. Six focus groups, seven interviews and five questerviews were conducted. Two main themes emerged: (a) delays (difficulties and avoidance) in diagnosing dying and (b) the EOL tool supporting staff in caring for the dying. Staff acknowledged that the diagnosis of dying was often made late; this was partly due to prognostic uncertainty but compounded by a culture that did not acknowledge death as a possible outcome until death was imminent. Both the medical and nursing staff found the EOL tool useful as a means of communicating ceilings of care, ensuring appropriate prescribing for EOL symptoms, and giving nurses permission to approach the bedside of a dying patient. The culture of avoiding death and dying in acute hospitals remains a significant barrier to providing EOL care, even when EOL tools are available and accepted by staff. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/

  6. End-of-life care in COPD: A survey carried out with Portuguese Pulmonologists

    Directory of Open Access Journals (Sweden)

    C. Gaspar

    2014-05-01

    Full Text Available Introduction: End-of-life (EoL care is a major component in the management of patients with advanced COPD. Patient-physician communication is essential in this process. Aim: To evaluate the practice of Portuguese Pulmonologists in EoL communication and palliative care in COPD. Methods: An on-line survey was sent to physicians affiliated to the Portuguese Pneumology Society. Results: We obtained 136 answers from 464 eligible participants (29.3%. About half of the physicians reported that they have rarely introduced EoL discussions with their COPD patients (48.5%. Most had never/rarely suggested decision-making on the use of invasive mechanical ventilation (68.4%. Discussions were described as occurring mostly during/after a major exacerbation (53.7%. Only 37.5% of participants reported treating dyspnoea with opioids frequently/always. Only 9.6% stated that they never/rarely treated anxiety/depression. Most participants perceive the discussion of EoL issues as being difficult/very difficult (89.0%. The reasons most frequently given were feeling that patients were not prepared for this discussion (70.0%, fear of taking away a patient's hope (58.0% and lack of training (51.0%. Conclusion: Patient and medical staff EoL communication in COPD is still not good enough. Training in this area and the creation of formal protocols to initiate EoL have been identified as major factors for improvement. Resumo: Introdução: Os cuidados terminais (EoL são um componente importante do tratamento de doentes com doença pulmonar obstrutiva crónica (DPOC avançada. A comunicação entre o doente e o médico é fundamental neste processo. Objetivo: Avaliar a prática dos pneumologistas portugueses na comunicação sobre o fim de vida e os cuidados paliativos na DPOC. Métodos: Foi enviado um inquérito online para os médicos sócios da Sociedade Portuguesa de Pneumologia. Resultados: Recebemos 136 respostas dos 464 participantes elegíveis (29,3%. Cerca de metade

  7. Facilitators and barriers for GP-patient communication in palliative care: a qualitative study among GPs, patients, and end-of-life consultants.

    Science.gov (United States)

    Slort, Willemjan; Blankenstein, Annette H; Deliens, Luc; van der Horst, Henriëtte E

    2011-04-01

    Effective communication is considered to be essential for the delivery of high-quality care. Communication in palliative care may be particularly difficult, and there is still no accepted set of communication skills for GPs in providing palliative care. To obtain detailed information on facilitators and barriers for GP-patient communication in palliative care, with the aim to develop training programmes that enable GPs to improve their palliative care communication skills. Qualitative study with focus groups, interviews, and questionnaires. GPs with patients receiving palliative care at home, and end-of-life consultants in the Netherlands. GP (n = 20) focus groups discussing facilitators and barriers, palliative care patient (n = 6) interviews regarding facilitators, and end-of-life consultant (n = 22) questionnaires concerning barriers. Facilitators reported by both GPs and patients were accessibility, taking time, commitment, and listening carefully. GPs emphasise respect, while patients want GPs to behave in a friendly way, and to take the initiative to discuss end-of-life issues. Barriers reported by both GPs and end-of-life consultants were: difficulty in dealing with former doctors' delay and strong demands from patients' relatives. GPs report difficulty in dealing with strong emotions and troublesome doctor-patient relationships, while consultants report insufficient clarification of patients' problems, promises that could not be kept, helplessness, too close involvement, and insufficient anticipation of various scenarios. The study findings suggest that the quality of GP-patient communication in palliative care in the Netherlands can be improved. It is recommended that specific communication training programmes for GPs should be developed and evaluated.

  8. Facilitators and barriers for GP–patient communication in palliative care: a qualitative study among GPs, patients, and end-of-life consultants

    Science.gov (United States)

    Slort, Willemjan; Blankenstein, Annette H; Deliens, Luc; van der Horst, Henriëtte E

    2011-01-01

    Background Effective communication is considered to be essential for the delivery of high-quality care. Communication in palliative care may be particularly difficult, and there is still no accepted set of communication skills for GPs in providing palliative care. Aim To obtain detailed information on facilitators and barriers for GP–patient communication in palliative care, with the aim to develop training programmes that enable GPs to improve their palliative care communication skills. Design of study Qualitative study with focus groups, interviews, and questionnaires. Setting GPs with patients receiving palliative care at home, and end-of-life consultants in the Netherlands. Method GP (n = 20) focus groups discussing facilitators and barriers, palliative care patient (n = 6) interviews regarding facilitators, and end-of-life consultant (n = 22) questionnaires concerning barriers. Results Facilitators reported by both GPs and patients were accessibility, taking time, commitment, and listening carefully. GPs emphasise respect, while patients want GPs to behave in a friendly way, and to take the initiative to discuss end-of-life issues. Barriers reported by both GPs and end-of-life consultants were: difficulty in dealing with former doctors' delay and strong demands from patients' relatives. GPs report difficulty in dealing with strong emotions and troublesome doctor–patient relationships, while consultants report insufficient clarification of patients' problems, promises that could not be kept, helplessness, too close involvement, and insufficient anticipation of various scenarios. Conclusion The study findings suggest that the quality of GP–patient communication in palliative care in the Netherlands can be improved. It is recommended that specific communication training programmes for GPs should be developed and evaluated. PMID:21439174

  9. Communication for end-of-life care planning among Korean patients with terminal cancer: A context-oriented model.

    Science.gov (United States)

    Koh, Su Jin; Kim, Shinmi; Kim, Jinshil

    2016-02-01

    In Korea, patients with terminal cancer are often caught out of the loop in end-of-life (EoL) care discussions. Healthcare professionals also have difficulty engaging in such communication in a variety of healthcare contexts. Therefore, the objective of our study was to develop a communication model for EoL care decision making compatible with the clinical environment in Korea. Using focus-group interview methodology, participants included eight doctors and five nurses who provide EoL care for terminal cancer patients in acute hospital settings or hospice care facilities in various provinces of Korea. Five themes emerged regarding EoL care discussion, which included: (1) timing, (2) responsible professionals, (3) disclosure of bad news, (4) content areas of EoL care discussion, and (5) implementing strategies for EoL care discussions. These themes were based on development of a communication algorithm for EoL discussion among patients with terminal cancer. A structural communication step for delivery of a terminal prognosis was specified at the phase of disclosure of bad news: beginning with determination of a patient's decision-making capability, followed by a patient's perception of his/her condition, a patient's wish to know, family dynamics, and a patient's and/or family's readiness for EoL discussions. The proposed context-oriented communication algorithm could provide a helpful guideline for EoL communication and, accordingly, facilitate meaningful improvements in EoL care in Korean clinical practice. The feasibility of this algorithm has not yet been determined, and its validation in a larger sample of patients with terminal cancers, using a quantitative research methodology, is a priority of research.

  10. End-Of-Life Care for Persons with Advanced Chronic Obstructive Pulmonary Disease: Report of a National Interdisciplinary Consensus Meeting

    Directory of Open Access Journals (Sweden)

    DM Goodridge

    2009-01-01

    Full Text Available While systemic shortcomings in meeting the needs of individuals with progressive chronic illnesses at the end of life have been well documented, there is growing interest in improving both care and quality of life for persons with advanced chronic obstructive pulmonary disease (COPD. For instance, the American Thoracic Society has issued an official statement on palliative care for patients with respiratory diseases, affirming that the prevention, relief, reduction and soothing of symptoms “without affecting a cure” must become an integral component of standard care. A recent Medline search located 1015 articles related to palliative or end-of-life care for people with COPD published between 2001 and 2008, compared with only 336 articles published before 2001. To address the needs of Canadian patients, an interdisciplinary consensus meeting, funded by the Canadian Institutes of Health Research and supported by the Canadian Thoracic Society, the Canadian Respiratory Health Professionals and the Canadian Lung Association was convened in Toronto, Ontario, on November 22, 2008, to begin examining the quality of end-of-life care for individuals with COPD in Canada. The present report summarizes the background to and outcomes of this consensus meeting.

  11. Retrospective studies of end-of-life resource utilization and costs in cancer care using health administrative data: a systematic review.

    Science.gov (United States)

    Langton, Julia M; Blanch, Bianca; Drew, Anna K; Haas, Marion; Ingham, Jane M; Pearson, Sallie-Anne

    2014-12-01

    There has been an increase in observational studies using health administrative data to examine the nature, quality, and costs of care at life's end, particularly in cancer care. To synthesize retrospective observational studies on resource utilization and/or costs at the end of life in cancer patients. We also examine the methods and outcomes of studies assessing the quality of end-of-life care. A systematic review according to PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) and AMSTAR (A Measurement Tool to Assess Systematic Reviews) methodology. We searched MEDLINE, Embase, CINAHL, and York Centre for Research and Dissemination (1990-2011). Independent reviewers screened abstracts of 14,424 articles, and 835 full-text manuscripts were further reviewed. Inclusion criteria were English-language; at least one resource utilization or cost outcome in adult cancer decedents with solid tumors; outcomes derived from health administrative data; and an exclusive end-of-life focus. We reviewed 78 studies examining end-of-life care in over 3.7 million cancer decedents; 33 were published since 2008. We observed exponential increases in service use and costs as death approached; hospital services being the main cost driver. Palliative services were relatively underutilized and associated with lower expenditures than hospital-based care. The 15 studies using quality indicators demonstrated that up to 38% of patients receive chemotherapy or life-sustaining treatments in the last month of life and up to 66% do not receive hospice/palliative services. Observational studies using health administrative data have the potential to drive evidence-based palliative care practice and policy. Further development of quality care markers will enhance benchmarking activities across health care jurisdictions, providers, and patient populations. © The Author(s) 2014.

  12. Paediatric End-of-LIfe CAre Needs in Switzerland (PELICAN) : Current end-of-life care practices and the persepctives of bereaved parents

    OpenAIRE

    Zimmermann, Karin

    2016-01-01

    Despite continued advancements in medical care and improved survival or life expectancy, childhood deaths due to complex chronic conditions (CCC) or prematurity are inevitable. Deaths during the first year of life constitute approximately 50% of disease-related deaths, the causes of which include perinatal complications, prematurity, or congenital anomalies. Beyond the age of one year, the three most common life-limiting CCCs are neurological/neuromuscular and cardiovascular conditions (inclu...

  13. Organ donation after controlled cardiac death under Maastricht category iii: Ethical implications and end of life care.

    Science.gov (United States)

    González-Méndez, M Isabel; López-Rodríguez, Luís

    2017-12-11

    The decrease in potential donation after brain death has resulted in a need to evaluate alternative sources. Donation after cardiac death is a good option. The objectives of this article are to describe the Maastricht type iii controlled organ donation characteristics and to determine end-of-life care and the role of nurses in the donation process. In this type of donation, cardiocirculatory arrest is predictable after the limitation of life sustaining treatments. These are patients for whom there are no effective therapy options and, in the context of an organised and planned practice involving all the professionals involved in the care of the patient, the decision is made, in consultation with the family, to withdraw life support measures. This limitation of life sustaining treatments is never carried out with the aim of making a Maastricht iii donation, but to avoid prolonging the dying process through useless and possibly degrading interventions. The obligation of the health team is to provide a dignified death and this not only includes the absence of pain, but the patient and their family must be guaranteed a feeling of calmness and serenity. Once the decision has been taken to withhold or withdraw measures, the nurse has an important role in the implementation of a palliative care plan in where physicians, nurses and patients/families should be involved and whose focus should be on patients' dignity and comfort, considering their physical, psychological and spiritual needs. Copyright © 2017 Elsevier España, S.L.U. All rights reserved.

  14. What do Japanese residents learn from treating dying patients? The implications for training in end-of-life care

    Directory of Open Access Journals (Sweden)

    Kazuko Arai

    2017-11-01

    Full Text Available Abstract Background How medical residents’ experiences with care for dying patients affect their emotional well-being, their learning outcomes, and the formation of their professional identities is not fully understood. We examine residents’ emotional states and learning occurring during the provision of care to dying patients and specifically discuss the impact of providing end-of-life (EOL care on professional identity formation. Methods Semi-structured interviews were conducted with 13 residents who had graduated in the last 3 to 5 years. Thematic theoretical analysis was applied, and key themes were developed based on Kolb’s experiential learning cycle. Results Eight key themes emerged from the analysis. The residents experienced dilemmas in confronting the reality of medical uncertainty as well as a disruption of emotional state and self-efficacy. Although the residents felt a sense of helplessness and guilt, they were able to reflect on strategies for handling medical care that focused on patients and that required a truly sincere attitude. They also contemplated the importance of palliative care and communication with patients, patients’ family members and medical staff. Building on these experiences, the residents rebuilt a sense of awareness that allowed them to directly engage with the type of medical care that they are likely to be called upon to perform in the future as the population continues to age. Conclusions This study revealed Japanese residents’ perceptions, emotions and learning processes in caring for dying patients by applying Kolb’s experiential learning theory. The findings of this study may illuminate valuable pieces of knowledge for future education in EOL care.

  15. Japan's policy of promoting end-of-life care in nursing homes: impact on facility and resident characteristics associated with the site of death.

    Science.gov (United States)

    Ikegami, Naoki; Ikezaki, Sumie

    2012-05-01

    To evaluate the impact of the policy to encourage nursing homes to provide end-of-life care by comparing facility and resident variables associated with dying within the nursing home and not in hospitals, and by comparing life sustaining treatment (LST) respectively provided. Questionnaires mailed to an 11% random sample of 653 nursing homes in 2009. Facility characteristics from 371 nursing homes (57%) and resident characteristics of the 1158 who had been discharged due to death were obtained from 241 facilities (37%). Facility characteristics related to dying in nursing homes were their policy of providing end-of-life care and physicians being based in home care supporting clinics. Resident characteristics related were not having pneumonia as the cause of death, the family's preference of the nursing home as the site of death and agreement within the family. Preferences on the use of LST were adhered more in residents who had died in nursing homes. Although the percentage of residents dying within the facility has increased, the nursing home as a site of death still composes only 3.2% of the total. To increase the latter, nursing homes should refocus their function to providing end-of-life care to those not preferring aggressive treatment. Copyright © 2012 Elsevier Ireland Ltd. All rights reserved.

  16. Experiences and needs of families regarding prognostic communication in an intensive care unit: supporting families at the end of life.

    Science.gov (United States)

    Gutierrez, Karen M

    2012-01-01

    This article reports the results of a study designed to explore the experiences and needs of family members for prognostic communication at end of life in an intensive care unit (ICU). Subjects in this qualitative study included 20 family members of patients at high risk for death in 1 adult medical/surgical ICU. All subjects were interviewed once utilizing a semistructured interview format, with approximately half interviewed multiple times during the ICU stay. Families described 5 themes of information-related "work": (1) hearing and recalling, (2) accessing, (3) interpreting, (4) retaining, and (5) utilizing information for decision making. Barriers, including accessing physicians and cognitive issues from high levels of stress, made this work difficult. Families described a need for prognostic information, especially if the prognosis was poor. Because hearing this news was difficult, they needed it communicated with respect, sensitivity, and compassion. Suggestions for clinical practice to support families in their information-related work are presented. Overall, the importance of providers approaching communication from a holistic perspective, extending beyond simply passing on information, is emphasized. Viewing communication as a therapeutic modality, and communicating with compassion, sensitivity, and a genuine sense of caring, can help provide both the information and the emotional support and comfort families desperately need.

  17. Values for the ICECAP-Supportive Care Measure (ICECAP-SCM) for use in economic evaluation at end of life.

    Science.gov (United States)

    Huynh, Elisabeth; Coast, Joanna; Rose, John; Kinghorn, Philip; Flynn, Terry

    2017-09-01

    End of life care may have elements of value that go beyond health. A generic measure of the benefits of end of life care could be helpful to decision makers. Such a measure, based on the capability approach, has recently been developed: the ICECAP Supportive Care Measure. This paper reports the first valuation exercise for that measure, with data from 6020 individuals collected from an on-line general population panel during June 2013. Individuals were asked to complete a stated choice experiment that combined best-worst scaling and a standard discrete choice experiment. Analysis of the best-worst data used limited dependent variable models within the random utility framework including the multinomial logit models and latent class choice model analysis. Exploratory steps were taken to determine the similarity of the best-worst and DCE data before formal testing and pooling of the two data sources. Combined data were analysed in a heteroscedastic conditional logit model adjusting for continuous scale. Two sets of tariffs were generated, one from the best-worst data capturing only main effects, and a second from the pooled data allowing for two-way interactions. Either tariff could be used in economic evaluation of interventions at the end of life, although there are advantages and disadvantages with each. This extensive valuation exercise for the ICECAP Supportive Care Measure, with a large number of members of the general public, could be complemented in the future with best-worst scaling studies amongst those experiencing the end of life. Copyright © 2017 Elsevier Ltd. All rights reserved.

  18. Experiences and preferences for end of life care for young adults with cancer and their informal carers: a narrative synthesis

    OpenAIRE

    Ngwenya, N; Kenten, C; Jones, L; Gibson, Faith; Pearce, S; Flatley, M; Hough, R; Stirling, LC; Taylor, R; Wong, G; Whelan, J

    2017-01-01

    Purpose To review the qualitative literature on experiences of and preferences for end of life care of people with cancer aged 16-40 years (young adults) and their informal carers. Methods A systematic review using narrative synthesis of qualitative studies using the 2006 UK Economic and Social Research Council research methods programme guidance. Seven electronic bibliographic databases, two clinical trials databases, and three relevant theses databases were searched from January 2004 to Oct...

  19. Multicultural long-term care nurses’ perceptions of factors influencing patient dignity at the end of life.

    Science.gov (United States)

    Periyakoil, Vyjeyanthi S; Stevens, Marguerite; Kraemer, Helena

    2013-03-01

    The goal of this mixed-methods study was to characterize the perceptions of multicultural long-term care nurses about patient dignity at the end-of-life (EOL). The study was conducted in a large, urban, long-term care (LTC) facility. Participants were 45 long-term care nurses and 26 terminally ill nursing home residents. Nurses completed an openended interview about their perceptions of the concept of dying with dignity, and the data were analyzed using grounded theory methods. Main themes identified as promoting resident dignity at the EOL included treating them with respect, helping them prepare for the EOL, promoting shared decision-making, and providing high-quality care. The nurses’ cultural and religious backgrounds influenced their perceptions of what constitutes dignity-conserving care. Foreign-born nurses stressed the need for EOL rituals, but this was strikingly absent in the statements of U.S.-born nurses. Foreign-born Catholic nurses stated that the dying experience should not be altered using analgesics to relieve suffering or by attempts to hasten death by forgoing curative therapy or by other means. Nurses and terminally ill individuals completed the Dignity Card-sort Tool (DCT). A comparison of the DCT responses of the LTC nurses cohort with those of the terminally ill participants revealed that the nurses felt patient dignity was eroded when patient wishes were not followed and when they were treated without respect. In contrast, dying LTC residents felt that poor medical care and loss of ability to choose care options were the most important factors leading to erosion of dignity.

  20. End-of-Life Care in ICUs in East Asia: A Comparison Among China, Korea, and Japan.

    Science.gov (United States)

    Park, So Young; Phua, Jason; Nishimura, Masaji; Deng, Yiyun; Kang, Yan; Tada, Keiichi; Koh, Younsuck

    2018-07-01

    To compare physicians' perceptions and practice of end-of-life care in the ICU in three East Asian countries cultures similarly rooted in Confucianism. A structured and scenario-based survey of physicians who managed ICU patients from May 2012 to December 2012. ICUs in China, Korea, and Japan. Specialists who are either intensivists or nonintensivist primary attending physicians in charge of patients (195 in China, 186 in Korea, 224 in Japan). None. Country was independently associated with differences in the practice of limiting multiple forms of life-sustaining treatments on multivariable generalized linear model analysis. Chinese respondents were least likely to apply do-not-resuscitate orders, even if they existed (p religion, clinical experience, and primary specialty were also independently associated with the different perceptions of end-of-life care. Despite similarities in cultures and a common emphasis on the role of family, differences exist in physician perceptions and practices of end-of-life ICU care in China, Korea, and Japan. These findings may be due to differences in the degree of Westernization, national healthcare systems, economic status, and legal climate.

  1. Staff perceptions of end-of-life care in the acute care setting: a New Zealand perspective.

    Science.gov (United States)

    Sheward, Karen; Clark, Jean; Marshall, Bridget; Allan, Simon

    2011-05-01

    Understanding current end of life (EOL) care delivery in acute care is an important prerequisite to positively influencing practice, and published New Zealand (NZ) and international data are limited. Therefore, staff perceptions of EOL care in the hospital setting were investigated via survey. This article presents key findings. A total of 610 staff members in a 194-bed regional hospital were surveyed regarding their perceptions of EOL care, which yielded a response rate of 29% with 179 surveys returned. Respondents were from medical, nursing, and allied health staff working in medical, surgical, elder health, and a regional cancer treatment service. Responses to Likert scale statements regarding the Care of the dying, Communication, Teamwork, Documentation, Attitudes to death and dying in the workplace, and Barriers to the care of patients, their whānau (a NZ Māori word that refers to extended family or family group), and families frequently contrasted with additional and explanatory comments. The thematic analysis of written text identified five themes: The reality of care, The team dynamic, The direction of care, Knowledge and education, and Environmental and organizational factors. The quality and timeliness of EOL care was significantly influenced by the elements informing the themes and the pervasive nature and importance of communication. Meeting the needs of dying patients in acute care was complex but a significant priority for staff.

  2. Learning from the public: citizens describe the need to improve end-of-life care access, provision and recognition across Europe

    NARCIS (Netherlands)

    Daveson, B.A.; Alonso, J.P.; Calanzani, N.; Ramsenthaler, C.; Gysels, M.; Antunes, B.; Moens, K.; Groeneveld, E.I.; Albers, G.; Finetti, S.; Pettenati, F.; Bausewein, C.; Higginson, I.J.; Harding, R.; Deliens, L.; Toscani, F.; Ferreira, P.L.; Ceulemans, L.; Gomes, B.

    2014-01-01

    Background: Despite ageing populations and increasing cancer deaths, many European countries lack national policies regarding palliative and end-of-life care. The aim of our research was to determine public views regarding end-of-life care in the face of serious illness. Methods: Implementation of a

  3. Exploring traditional end-of-life beliefs, values, expectations, and practices among Chinese women living in England: Informing culturally safe care.

    Science.gov (United States)

    Fang, Mei Lan; Malcoe, Lorraine Halinka; Sixsmith, Judith; Wong, Louise Yuen Ming; Callender, Matthew

    2015-10-01

    This study explores the end-of-life (EoL) beliefs, values, practices, and expectations of a select group of harder-to-reach Chinese women living in England. A cultural safety approach was undertaken to interpret 11 in-depth, semistructured interviews. Interviews were conducted in Mandarin and Cantonese. Transcripts were translated and back-translated by two researchers. Findings were analyzed using the technical analytical principles of grounded theory. The key themes generated from our analysis include: acculturation; differential beliefs and norms in providing care: family versus health services; language and communication; Eastern versus Western spiritual practices and beliefs; and dying, death, and the hereafter. End-of-life discussions can be part of an arduous, painful, and uncomfortable process, particularly for migrants living on the margins of society in a new cultural setting. For some Chinese people living in the United Kingdom, end-of-life care requires attention to acculturation, particularly Western versus Eastern beliefs on religion, spirituality, burial practices, and provision of care, and the availability of culturally specific care, all of which encompass issues related to gender. Stories of a purposive sample of Chinese women were viewed through a cultural safety lens to gain a deeper understanding of how social and cultural norms and expectations, in addition to the pressures of acculturation, impact gendered roles and responsibilities. The analysis revealed variations between/within Eastern and Western culture that resulted in pronounced, and oftentimes gendered, differences in EoL care expectations.

  4. [French law related to patient's rights and end of life: pediatric intensive care unit's health professionals' opinions].

    Science.gov (United States)

    de Saint Blanquat, L; Cremer, R; Elie, C; Lesage, F; Dupic, L; Hubert, P

    2014-01-01

    To identify the knowledge of caregivers of pediatric intensive care units (PICUs) on the French law related to patients' rights and end of life, their views on withholding/withdrawing life-sustaining treatment (WWLST) decisions, and their feelings about how these decisions were made and implemented. A multicenter survey in 24 French PICUs during the fourth trimester 2010. One thousand three hundred and thirty-nine professional healthcare workers (1005 paramedics and 334 physicians) responded. Over 85% of caregivers had good knowledge of the WWLST decision-making processes required by law. More than 80% of caregivers accepted mechanical ventilation, hemodiafiltration, or hemodynamic support withdrawal or withholding. Nevertheless, the withdrawal of artificial nutrition and hydration generated reluctance or opposition for the majority of respondents. While paramedics' participation in the decision-making process was deemed necessary by all caregivers, paramedics found more often than physicians that they were insufficiently involved. The quality of end-of-life care was judged very positively by caregivers. The answers on how WWLST was applied suggest very different interpretations of the law. Some caregivers respect the principles of palliative care as stated in the public health code and 40% of doctors and 64% of caregivers consider it "acceptable" to hasten death if resulting from a collaborative decision-making process. This study is the first to show that caregivers of French PICUs have good knowledge of the French law concerning the end of life. Yet, there is still confusion about the limits of practice during the end-of-life period. Copyright © 2013 Elsevier Masson SAS. All rights reserved.

  5. Systematic review of the primary research on minority ethnic groups and end-of-life care from the United Kingdom.

    Science.gov (United States)

    Evans, Natalie; Meñaca, Arantza; Andrew, Erin V W; Koffman, Jonathan; Harding, Richard; Higginson, Irene J; Pool, Robert; Gysels, Marjolein

    2012-02-01

    Patients from minority ethnic groups experience lower rates of referrals to end-of-life (EoL) care services, higher levels of dissatisfaction with services, and perceive some services as culturally inappropriate. To systematically review original studies of minority ethnic groups and EoL care in the U.K. and appraise their quality. Searches were carried out in 13 electronic databases, eight journals, reference lists, and the gray literature. Studies of minority ethnic groups and EoL care in the U.K. were included. Studies were graded for quality and key themes were identified. Forty-five studies met inclusion criteria. Study quality was good on average. Identified key themes included age structure; inequality by disease group; referrals; caregivers; place of care and death; awareness of services and communication; and cultural competency. Strategies described for the reduction of inequities were partial and reactive. The format of 10 studies prevented quality grading; these were, however, reviewed as they provided unique insights. Variations in terminology and sampling frames complicated comparison across studies. The results highlight the multiple and related factors that contribute to low service use and substandard quality of services experienced by minority ethnic groups, and the need for authors to clarify what they mean by "culturally competent" EoL care. The synthesis of diverse and disparate studies underpins a number of key recommendations for health care professionals and policymakers. Tackling these epidemiological, demographic, institutional, social, and cultural factors will require a systematic and organization-wide approach rather than the current piecemeal and reactive interventions. Copyright © 2012 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

  6. A knowledge synthesis of culturally- and spiritually-sensitive end-of-life care: findings from a scoping review.

    Science.gov (United States)

    Fang, Mei Lan; Sixsmith, Judith; Sinclair, Shane; Horst, Glen

    2016-05-18

    Multiple factors influence the end-of-life (EoL) care and experience of poor quality services by culturally- and spiritually-diverse groups. Access to EoL services e.g. health and social supports at home or in hospices is difficult for ethnic minorities compared to white European groups. A tool is required to empower patients and families to access culturally-safe care. This review was undertaken by the Canadian Virtual Hospice as a foundation for this tool. To explore attitudes, behaviours and patterns to utilization of EoL care by culturally and spiritually diverse groups and identify gaps in EoL care practice and delivery methods, a scoping review and thematic analysis of article content was conducted. Fourteen electronic databases and websites were searched between June-August 2014 to identify English-language peer-reviewed publications and grey literature (including reports and other online resources) published between 2004-2014. The search identified barriers and enablers at the systems, community and personal/family levels. Primary barriers include: cultural differences between healthcare providers; persons approaching EoL and family members; under-utilization of culturally-sensitive models designed to improve EoL care; language barriers; lack of awareness of cultural and religious diversity issues; exclusion of families in the decision-making process; personal racial and religious discrimination; and lack of culturally-tailored EoL information to facilitate decision-making. This review highlights that most research has focused on decision-making. There were fewer studies exploring different cultural and spiritual experiences at the EoL and interventions to improve EoL care. Interventions evaluated were largely educational in nature rather than service oriented.

  7. A retrospective study of end-of-life care decisions in the critically Ill in a surgical intensive care unit

    Directory of Open Access Journals (Sweden)

    Yi Lin Lee

    2018-01-01

    Full Text Available Aim: Progress in medical care and technology has led to patients with more advanced illnesses being admitted to the Intensive Care Unit (ICU. The practice of approaching end-of-life (EOL care decisions and limiting care is well documented in Western literature but unknown in Singapore. We performed a retrospective cohort study to describe the practice of EOL care in patients dying in a Singapore surgical ICU (SICU. The surgical critical care population was chosen as it is unique because surgeons are frequently involved in the EOL process. Methods: All consecutive patients aged 21 and above admitted to the SICU from July 2011 to March 2012, and who passed away in the ICU or within 7 days of discharge from the ICU (to account for transferred patients out of the ICU after end-of life care decisions were made and subsequently passed away were included in the study. Results: There were 473 SICU admissions during this period, out of which 53 were included with a mean age of 67.2 ± 11.1 years. EOL discussions were held in 81.1% of patients with a median time from admission to first discussion at 1 day (IQR 0–2.75 and a median number of ICU discussion of 1 (IQR 1–2. As most patients lacked decision-making capacity (inability to retain and process information secondary to the underlying disease pathology or sedative use, a surrogate was involved: group decision in 27.9%, child in 25.6% and an unclear family nominated member in 20.9%. 28.3% of patients were managed as for full active with resuscitation, 39.6% nonescalation of care, and 32.1% for withdrawal. The main reasons for conservative management (nonescalation and withdrawal of care were certain death in 52.3%, medical futility with minimal response to maximal care (27.3%, and the presence of underlying malignancy (18.2%. There was no significant difference between race or religion among patients for active or conservative management. Conclusion: 71.7% of patients who passed away in the ICU or

  8. OA18 Population based end of life care - meeting the challenge of the ageing population.

    Science.gov (United States)

    Thomas, Keri

    2015-04-01

    The key challenge for most developed countries is meeting the needs of our ageing population, in particular, those nearing the end of their lives - population-based end-of-life care. Building on a public health approach to meet needs of an area-wide population, and a practical approach of enabling generalist frontline staff care for all people in a variety of settings using the GSF Quality Improvement Programmes, we describe progress in a few GSF Cross-Boundary Care Foundation Sites taking a population-based view to meet the challenges of the ageing population. Taking a whole-system view, we explore ways to ensure all people receive quality care towards the final stages of life in line with their needs and wishes in a way that is cost-effective, responsive and compassionate. Expanding concepts of palliative/end-of-life care to include care for people with long-term conditions, dementia, and frailty. We describe practical progress in a number of GSF XBC Sites, enabling generalist frontline staff including: Identifying and prioritising people earlier Reducing 'diagnostic apartheid' Enabling more to live well and die well in the place and manner of their choosing Encouraging integrated person-centred care, reducing inappropriate over-Hospitalisation and prevention of over - medicalising. Use of GSF in various settings to enable generalist frontline staff is described, with key outcome measures and evaluations in the UK, and internationally. As the population ages, population-based end of life care will be one of the most significant developments to meet the challenges for a fit-for-purpose health service of the future. © 2015, Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

  9. Toward Improving Quality of End-of-Life Care: Encoding Clinical Guidelines and Standing Orders Using the Omaha System.

    Science.gov (United States)

    Slipka, Allison F; Monsen, Karen A

    2018-02-01

    End-of-life care (EOLC) relieves the suffering of millions of people around the globe each year. A growing body of hospice care research has led to the creation of several evidence-based clinical guidelines for EOLC. As evidence for the effectiveness of timely EOLC swells, so does the increased need for efficient information exchange between disciplines and across the care continuum. The purpose of this study was to investigate the feasibility of using the Omaha System as a framework for encoding interoperable evidence-based EOL interventions with specified temporality for use across disciplines and settings. Four evidence-based clinical guidelines and one current set of hospice standing orders were encoded using the Omaha System Problem Classification Scheme and Intervention Scheme, as well as Systematized Nomenclature of Medicine-Clinical Terms (SNOMED CT). The resulting encoded guideline was entered on a Microsoft Excel spreadsheet and made available for public use on the Omaha System Guidelines website. The resulting EOLC guideline consisted of 153 interventions that may enable patients and their surrogates, clinicians, and ancillary providers to communicate interventions in a universally comprehensible way. Evidence-based interventions from diverse disciplines involved in EOLC are described within this guideline using the Omaha System. Because the Omaha System and clinical guidelines are maintained in the public domain, encoding interventions is achievable by anyone with access to the Internet and basic Excel skills. Using the guideline as a documentation template customized for unique patient needs, clinicians can quantify and track patient care across the care continuum to ensure timely evidence-based interventions. Clinical guidelines coded in the Omaha System can support the use of multidisciplinary evidence-based interventions to improve quality of EOLC across settings and professions. © 2017 Sigma Theta Tau International.

  10. Ethical dilemmas in the care of cancer patients near the end of life.

    Science.gov (United States)

    Ong, W Y; Yee, C M; Lee, A

    2012-01-01

    By definition, an ethical dilemma involves the need to choose from among two or more morally acceptable options or between equally unacceptable courses of action, when one choice prevents selection of the other. Advances in medicine, increasing economic stress, rise of patient self-determination and differing values between healthcare workers and patients are among the many factors contributing to the frequency and complexity of ethical issues in healthcare. In the cancer patient near the end of life, common ethical dilemmas include those dealing with artificial nutrition and hydration, truth-telling and disagreements over management plans. It would stand the clinician in good stead to be aware of these issues and have an approach toward dealing with such problems. In addition, organisations have a responsibility to ensure that systems are in place to minimise its occurrence and ensure that staff are supported through the process of resolving dilemmas and conflicts that may arise.

  11. Truth Telling as an Element of Culturally Competent Care at End of Life.

    Science.gov (United States)

    Rising, Margaret L

    2017-01-01

    Nondisclosure of terminal prognosis in the context of intercultural interactions can cause moral distress among health care providers guided exclusively by informed consent. However, cultural humility can show that revealing and withholding prognostic information are two equally valid paths to the goal of protecting the patient from harm. Assumptions and history giving rise to the preference for truth telling in the United States(US) are examined. Principles of biomedical ethics are described within the context of US, Chinese, and Latin American cultures. The process of cultural competence in the delivery of health care services is explained and introduces the concept of cultural humility. By focusing more on biases and assumptions brought forth from the dominant culture, health care providers may experience less moral distress and convey increased caring in the context of intercultural interactions and nondisclosure of prognosis of a terminal illness. © The Author(s) 2015.

  12. A knowledge synthesis of culturally- and spiritually-sensitive end-of-life care: findings from a scoping review

    OpenAIRE

    Fang, Mei Lan; Sixsmith, Judith; Sinclair, Shane; Horst, Glen

    2016-01-01

    Background Multiple factors influence the end-of-life (EoL) care and experience of poor quality services by culturally- and spiritually-diverse groups. Access to EoL services e.g. health and social supports at home or in hospices is difficult for ethnic minorities compared to white European groups. A tool is required to empower patients and families to access culturally-safe care. This review was undertaken by the Canadian Virtual Hospice as a foundation for this tool. Methods To explore atti...

  13. The role of advance directives in end-of-life decisions in Austria: survey of intensive care physicians.

    Science.gov (United States)

    Schaden, Eva; Herczeg, Petra; Hacker, Stefan; Schopper, Andrea; Krenn, Claus G

    2010-10-21

    Currently, intensive care medicine strives to define a generally accepted way of dealing with end-of-life decisions, therapy limitation and therapy discontinuation.In 2006 a new advance directive legislation was enacted in Austria. Patients may now document their personal views regarding extension of treatment. The aim of this survey was to explore Austrian intensive care physicians' experiences with and their acceptance of the new advance directive legislation two years after enactment (2008). Under the aegis of the OEGARI (Austrian Society of Anaesthesiology, Resuscitation and Intensive Care) an anonymised questionnaire was sent to the medical directors of all intensive care units in Austria. The questions focused on the physicians' experiences regarding advance directives and their level of knowledge about the underlying legislation. There were 241 questionnaires sent and 139 were turned, which was a response rate of 58%. About one third of the responders reported having had no experience with advance directives and only 9 directors of intensive care units had dealt with more than 10 advance directives in the previous two years. Life-supporting measures, resuscitation, and mechanical ventilation were the predominantly refused therapies, wishes were mainly expressed concerning pain therapy. A response rate of almost 60% proves the great interest of intensive care professionals in making patient-oriented end-of-life decisions. However, as long as patients do not make use of their right of co-determination, the enactment of the new law can be considered only a first important step forward.

  14. Certainty and uncertainty about end of life care nursing practices in New Zealand Intensive Care Units: a mixed methods study.

    Science.gov (United States)

    Coombs, Maureen; Fulbrook, Paul; Donovan, Sarah; Tester, Rachel; deVries, Kay

    2015-05-01

    With end-of-life (EOL) central to the nursing role in intensive care, few studies have been undertaken to explore EOL care in the context of New Zealand (NZ) intensive care nursing. To investigate NZ intensive care nurses' experiences of, and attitudes towards EOL care. Sequential mixed methods study using cross sectional survey with follow-on focus groups. NZ intensive care nurses (N=465) across four large tertiary intensive care units (ICUs) were contacted to complete a 43-item web-based survey. A follow-on focus group was conducted in each of the sites to explore specific aspects of the survey findings. 203 fully completed surveys were returned (response rate 44%) from the four ICUs. Over half of nurses surveyed (55%, n=111) disagreed that withholding and withdrawing life support treatment were ethically the same. 78% (n=159) of nurses stated that withholding treatment was ethically more acceptable than withdrawing it. Whilst nurses generally supported reducing inspired oxygen to air for ventilated patients at EOL (71%, n=139) this was also an area that demonstrated one of the highest levels of uncertainty (21%, n=41). Just under a quarter of respondents were also uncertain about the use of continued nutritional support, continued passive limb exercises and use of deep sedation during EOL. The 18 nurses who participated in follow-on focus groups detailed the supportive, culturally sensitive, collaborative environment that EOL was conducted in. However diverse opinions and understandings were held on the use of passive limb and use of fluids at EOL. Whilst results from this NZ study broadly align with European studies, uncertainty about specific areas of EOL practices highlight that further guidance for nurses is required. Copyright © 2015 Australian College of Critical Care Nurses Ltd. Published by Elsevier Ltd. All rights reserved.

  15. Can Playing an End-of-Life Conversation Game Motivate People to Engage in Advance Care Planning?

    Science.gov (United States)

    Van Scoy, Lauren J; Green, Michael J; Reading, Jean M; Scott, Allison M; Chuang, Cynthia H; Levi, Benjamin H

    2017-09-01

    Advance care planning (ACP) involves several behaviors that individuals undertake to prepare for future medical care should they lose decision-making capacity. The goal of this study was to assess whether playing a conversation game could motivate participants to engage in ACP. Sixty-eight English-speaking, adult volunteers (n = 17 games) from communities around Hershey, Pennsylvania, and Lexington, Kentucky, played a conversation card game about end-of-life issues. Readiness to engage in 4 ACP behaviors was measured by a validated questionnaire (based on the transtheoretical model) immediately before and 3 months postgame and a semistructured phone interview. These behaviors were (1) completing a living will; (2) completing a health-care proxy; (3) discussing end-of-life wishes with loved ones; and (4) discussing quality versus quantity of life with loved ones. Participants' (n = 68) mean age was 51.3 years (standard deviation = 0.7, range: 22-88); 94% of the participants were caucasian and 67% were female. Seventy-eight percent of the participants engaged in ACP behaviors within 3 months of playing the game (eg, updating documents, discussing end-of-life issues). Furthermore, 73% of the participants progressed in stage of change (ie, readiness) to perform at least 1 of the 4 behaviors. Scores on measures of decisional balance and processes of change increased significantly by 3 months postintervention. This pilot study found that individuals who played a conversation game had high rates of performing ACP behaviors within 3 months. These findings suggest that using a game format may be a useful way to motivate people to perform important ACP behaviors.

  16. Do palliative care interventions reduce emergency department visits among patients with cancer at the end of life? A systematic review.

    Science.gov (United States)

    DiMartino, Lisa D; Weiner, Bryan J; Mayer, Deborah K; Jackson, George L; Biddle, Andrea K

    2014-12-01

    Frequent emergency department (ED) visits are an indicator of poor quality of cancer care. Coordination of care through the use of palliative care teams may limit aggressive care and improve outcomes for patients with cancer at the end of life. To systematically review the literature to determine whether palliative care interventions implemented in the hospital, home, or outpatient clinic are more effective than usual care in reducing ED visits among patients with cancer at the end of life. PubMed, EMBASE, and CINAHL databases were searched from database inception to May 7, 2014. Only randomized/non-randomized controlled trials (RCTs) and observational studies examining the effect of palliative care interventions on ED visits among adult patients with cancer with advanced disease were considered. Data were abstracted from the articles that met all the inclusion criteria. A second reviewer independently abstracted data from 2 articles and discrepancies were resolved. From 464 abstracts, 2 RCTs, 10 observational studies, and 1 non-RCT/quasi-experimental study were included. Overall there is limited evidence to support the use of palliative care interventions to reduce ED visits, although studies examining effect of hospice care and those conducted outside of the United States reported a statistically significant reduction in ED visits. Evidence regarding whether palliative care interventions implemented in the hospital, home or outpatient clinic are more effective than usual care at reducing ED visits is not strongly substantiated based on the literature reviewed. Improvements in the quality of reporting for studies examining the effect of palliative care interventions on ED use are needed.

  17. Euthanasia, assisted suicide and end-of-life care: attitudes of students, residents and attending physicians.

    Science.gov (United States)

    Ramírez-Rivera, José; Cruz, Juan; Jaume-Anselmi, Francisco

    2006-12-01

    Attitudes in regard to end-of life issues are evolving in Western societies. We have sought to trace this evolution in the relatively homogeneous cultural setting of Puerto Rico. One hundred fifty-two medical students, 62 medical residents and 84 members of three medical faculties were asked whether in terminally ill patients they: 1) would support a request for euthanasia(E); 2) if legalized, would engage in, would oppose or would not be opposed to others engaging physician-assisted suicide(PAS); 3) would consider ethical to prescribe full doses of drugs needed to alleviate pain, even if they knew it would hasten death; 4) would agree to limit certain resources for the terminally ill. Gender and religious affiliation were also requested. Twenty-eight percent of the students, 26% of the residents and 31% of the faculty supported E. Only 13% of the students, 18% of the residents and 11% of the faculty would engage in PAS. Men were more willing than women to acquiesce to a request for E or PAS. Religious affiliation or its absence did not influence the support or opposition to E and PAS. If it would hasten death, 86% of the residents, but only 65% of the faculty considered ethical to prescribe the dose of drugs needed to alleviate pain. More than 2/3 of the students, residents and faculty favored the limiting of certain resources for the terminally ill. In our cultural and medical environment, men are more willing than women to engage in E or PAS. The attitude towards E and PAS is not influenced by religious affiliation. If it hastens death, some still consider unethical to prescribe full doses of drugs needed to alleviate pain in the dying patient.

  18. Nurses' knowledge of advance directives and perceived confidence in end-of-life care: a cross-sectional study in five countries.

    LENUS (Irish Health Repository)

    Coffey, Alice

    2016-01-28

    Nurses\\' knowledge regarding advance directives may affect their administration and completion in end-of-life care. Confidence among nurses is a barrier to the provision of quality end-of-life care. This study investigated nurses\\' knowledge of advance directives and perceived confidence in end-of-life care, in Hong Kong, Ireland, Israel, Italy and the USA using a cross-sectional descriptive design (n = 1089). In all countries, older nurses and those who had more professional experience felt more confident managing patients\\' symptoms at end-of-life and more comfortable stopping preventive medications at end-of-life. Nurses in the USA reported that they have more knowledge and experience of advance directives compared with other countries. In addition, they reported the highest levels of confidence and comfort in dealing with end-of-life care. Although legislation for advance directives does not yet exist in Ireland, nurses reported high levels of confidence in end-of-life care.

  19. Social workers' roles in addressing the complex end-of-life care needs of elders with advanced chronic disease.

    Science.gov (United States)

    Kramer, Betty J

    2013-01-01

    This study examined social workers' roles in caring for low-income elders with advanced chronic disease in an innovative, community-based managed care program, from the perspective of elders, family, team members, and social workers. The results are drawn from a larger longitudinal, multimethod case study. Sources of data include survey reports of needs addressed by social workers for 120 deceased elders, five focus groups with interdisciplinary team members, and in-depth interviews with 14 elders and 10 of their family caregivers. A thematic conceptual matrix was developed to detail 32 distinctive social work roles that address divergent needs of elders, family, and team members. Distinctive perceptions of social workers' roles were identified for the different stakeholder groups (i.e., elders, family caregivers, team members, and social workers). Findings from this study may inform supervisors and educators regarding training needs of those preparing to enter the rapidly growing workforce of gerontological social workers who may be called upon to care for elders at the end of life. Training is particularly warranted to help social workers gain the skills needed to more successfully treat symptom management, depression, anxiety, agitation, grief, funeral planning, and spiritual needs that are common to the end of life.

  20. The nursing role during end-of-life care in the intensive care unit related to the interaction between patient, family and professional: an integrative review

    NARCIS (Netherlands)

    Noome, M.; Beneken genaamd Kolmer, D.M.; Leeuwen, E. van; Dijkstra, B.M.; Vloet, L.C.M.

    2016-01-01

    AIM: The aim of this study was to explore how intensive care unit (ICU) nurses describe their role during End-of-Life Care (EOLC) in the ICU, related to the interaction between patient, family and professionals (care triad). METHOD: Three electronic databases, PubMed, CINAHL and EMBASE, and

  1. The nursing role during end-of-life care in the intensive care unit related to the interaction between patient, family and professional : An integrative review

    NARCIS (Netherlands)

    Noome, M.; Beneken genaamd Kolmer, D.M.; van Leeuwen, E.; Dijkstra, B.M.; Vloet, L.

    2016-01-01

    Aim The aim of this study was to explore how intensive care unit (ICU) nurses describe their role during End-of-Life Care (EOLC) in the ICU, related to the interaction between patient, family and professionals (care triad). Method Three electronic databases, PubMed, CINAHL and EMBASE, and reference

  2. Nurse Knowledge, Work Environment, and Turnover in Highly Specialized Pediatric End-of-Life Care.

    Science.gov (United States)

    Lindley, Lisa C; Cozad, Melanie J

    2017-07-01

    To examine the relationship between nurse knowledge, work environment, and registered nurse (RN) turnover in perinatal hospice and palliative care organizations. Using nurse intellectual capital theory, a multivariate analysis was conducted with 2007 National Home and Hospice Care Survey data. Perinatal hospice and palliative care organizations experienced a 5% turnover rate. The professional experience of advanced practice nurses (APNs) was significantly related to turnover among RNs (β = -.032, P < .05). Compared to organizations with no APNs professional experience, clinical nurse specialists and nurse practitioners significantly reduced RN turnover by 3 percentage points. No other nurse knowledge or work environment variables were associated with RN turnover. Several of the control variables were also associated with RN turnover in the study; Organizations serving micropolitan (β = -.041, P < .05) and rural areas (β = -.037, P < .05) had lower RN turnover compared to urban areas. Organizations with a technology climate where nurses used electronic medical records had a higher turnover rate than those without (β = .036, P < .05). The findings revealed that advanced professional experience in the form of APNs was associated with reductions in RN turnover. This suggests that having a clinical nurse specialist or nurse practitioner on staff may provide knowledge and experience to other RNs, creating stability within the organization.

  3. [Truth telling and advance care planning at the end of life].

    Science.gov (United States)

    Hu, Wen-Yu; Yang, Chia-Ling

    2009-02-01

    One of the core values in terminal care the respect of patient 'autonomy'. This essay begins with a discussion of medical ethics principles and the Natural Death Act in Taiwan and then summarizes two medical ethical dilemmas, truth telling and advance care planning (ACP), faced in the development of hospice and palliative care in Taiwan. The terminal truth telling process incorporates the four basic principles of Assessment and preparation, Communication with family, Truth-telling process, and Support and follow up (the so-called "ACTs"). Many experts suggest practicing ACP by abiding by the following five steps: (1) presenting and illustrating topics; (2) facilitating a structured discussion; (3) completing documents with advanced directives (ADs); (4) reviewing and updating ADs; and (5) applying ADs in clinical circumstances. Finally, the myths and challenges in truth telling and ADs include the influence of healthcare system procedures and priorities, inadequate communication skills, and the psychological barriers of medical staffs. Good communication skills are critical to truth telling and ACP. Significant discussion about ACP should help engender mutual trust between patients and the medical staffs who take the time to establish such relationships. Promoting patient autonomy by providing the opportunity of a good death is an important goal of truth telling and ACP in which patients have opportunities to choose their terminal treatment.

  4. Enhancing the Empathic Connection: Using Action Methods to Understand Conflicts in End-of-Life Care.

    Science.gov (United States)

    Tanzi, Silvia; Biasco, Guido; Baile, Walter F

    2014-05-01

    Empathy is a core feature of patient-centered care. It enables practitioners to better understand the patient and family concerns that are key to patient and family satisfaction, prevention of anxiety and depression, and provider empowerment. Current methods of teaching communication skills do not specifically focus on enhancing the ability to "stand in the patient's shoes" as a way of connecting with the patient and/or family experience and understanding feelings that may be a source of conflict with providers. In this paper, we present a model for deepening empathic understanding based upon action methods (role-reversal and doubling) derived from psychodrama and sociodrama. We describe these techniques and illustrate how they can be used to identify hidden emotions and attitudes and reveal that which the patient and family member may be thinking or feeling but be afraid to say. Finally, we present data showing that these methods were valuable to participants in enhancing their professional experience and skills.

  5. End-of-life care for immigrants in Germany. An epidemiological appraisal of Berlin.

    Science.gov (United States)

    Henke, Antje; Thuss-Patience, Peter; Behzadi, Asita; Henke, Oliver

    2017-01-01

    -immigrants. In this regard, Turkish immigrants in particular have the poorest utilization of HPC. These results should prompt research on Turkish immigrants, regarding access barriers, since they represent the largest immigrant group. This may be due to a lack of cultural sensitivity of the care-providers and a lack of knowledge about HPC among immigrants. In the comparison of the kinds of institutions, immigrants are less likely to access outpatient hospice services compared to PC. Apparently, PC appear to be a smaller hurdle for utilization. These results show a non-existent, but oft-cited "healthy immigrant effect" of the first generation of work immigrants, now entering old age. These findings correspond with studies suggesting increased health concerns in immigrants. Focused research is needed to promote efforts in providing adequate and fair access to HPC for all people in Berlin.

  6. From end of life to chronic care: the provision of community home-based care for HIV and the adaptation to new health care demands in Zambia.

    Science.gov (United States)

    Aantjes, Carolien J; Simbaya, Joseph; Quinlan, Tim K C; Bunders, Joske F G

    2016-11-01

    Aim We present the evolution of primary-level HIV and AIDS services, shifting from end of life to chronic care, and draw attention to the opportunities and threats for the future of Zambia's nascent chronic care system. Although African governments struggled to provide primary health care services in the context of a global economic crisis, civil society organisations (CSO) started mobilising settlement residents to respond to another crisis: the HIV and AIDS pandemic. These initiatives actively engaged patients, families and settlement residents to provide home-based care to HIV-infected patients. After 30 years, CHBC programmes continue to be appropriate in the context of changing health care needs in the population. The study took place in 2011 and 2012 and was part of a multi-country study. It used a mixed method approach involving semi-structured interviews, focus group discussions, structured interviews, service observations and a questionnaire survey. Findings Our research revealed long-standing presence of extensive mutual support amongst residents in many settlements, the invocation of cultural values that emphasise social relationships and organisation of people by CSO in care and support programmes. This laid the foundation for a locally conceived model of chronic care capable of addressing the new care demands arising from the country's changing burden of disease. However, this capacity has come under threat as the reduction in donor funding to community home-based care programmes and donor and government interventions, which have changed the nature of these programmes in the country. Zambia's health system risks losing valuable capacity for fulfilling its vision 'to bring health care as close to the family as possible' if government strategies do not acknowledge the need for transformational approaches to community participation and continuation of the brokering role by CSO in primary health care.

  7. Development, validity and reliability testing of the East Midlands Evaluation Tool (EMET) for measuring impacts on trainees' confidence and competence following end of life care training.

    Science.gov (United States)

    Whittaker, B; Parry, R; Bird, L; Watson, S; Faull, C

    2017-02-02

    To develop, test and validate a versatile questionnaire, the East Midlands Evaluation Tool (EMET), for measuring effects of end of life care training events on trainees' self-reported confidence and competence. A paper-based questionnaire was designed on the basis of the English Department of Health's core competences for end of life care, with sections for completion pretraining, immediately post-training and also for longer term follow-up. Preliminary versions were field tested at 55 training events delivered by 13 organisations to 1793 trainees working in diverse health and social care backgrounds. Iterative rounds of development aimed to maximise relevance to events and trainees. Internal consistency was assessed by calculating interitem correlations on questionnaire responses during field testing. Content validity was assessed via qualitative content analysis of (1) responses to questionnaires completed by field tester trainers and (2) field notes from a workshop with a separate cohort of experienced trainers. Test-retest reliability was assessed via repeat administration to a cohort of student nurses. The EMET comprises 27 items with Likert-scaled responses supplemented with questions seeking free-text responses. It measures changes in self-assessed confidence and competence on 5 subscales: communication skills; assessment and care planning; symptom management; advance care planning; overarching values and knowledge. Test-retest reliability was found to be good, as was internal consistency: the questions successfully assess different aspects of the same underlying concept. The EMET provides a time-efficient, reliable and flexible means of evaluating effects of training on self-reported confidence and competence in the key elements of end of life care. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.

  8. Communication Tools for End-of-Life Decision-Making in Ambulatory Care Settings: A Systematic Review and Meta-Analysis.

    Science.gov (United States)

    Oczkowski, Simon J; Chung, Han-Oh; Hanvey, Louise; Mbuagbaw, Lawrence; You, John J

    2016-01-01

    Patients with serious illness, and their families, state that better communication and decision-making with healthcare providers is a high priority to improve the quality of end-of-life care. Numerous communication tools to assist patients, family members, and clinicians in end-of-life decision-making have been published, but their effectiveness remains unclear. To determine, amongst adults in ambulatory care settings, the effect of structured communication tools for end-of-life decision-making on completion of advance care planning. We searched for relevant randomized controlled trials (RCTs) or non-randomized intervention studies in MEDLINE, EMBASE, CINAHL, ERIC, and the Cochrane Database of Randomized Controlled Trials from database inception until July 2014. Two reviewers independently screened articles for eligibility, extracted data, and assessed risk of bias. Grading of Recommendations Assessment, Development, and Evaluation (GRADE) was used to evaluate the quality of evidence for each of the primary and secondary outcomes. Sixty-seven studies, including 46 RCTs, were found. The majority evaluated communication tools in older patients (age >50) with no specific medical condition, but many specifically evaluated populations with cancer, lung, heart, neurologic, or renal disease. Most studies compared the use of communication tools against usual care, but several compared the tools to less-intensive advance care planning tools. The use of structured communication tools increased: the frequency of advance care planning discussions/discussions about advance directives (RR 2.31, 95% CI 1.25-4.26, p = 0.007, low quality evidence) and the completion of advance directives (ADs) (RR 1.92, 95% CI 1.43-2.59, pcare desired and care received by patients (RR 1.17, 95% CI 1.05-1.30, p = 0.004, low quality evidence, 2 RCTs). The use of structured communication tools may increase the frequency of discussions about and completion of advance directives, and concordance between

  9. What evidence is available on end-of-life (EOL) care and Latino elders? A literature review.

    Science.gov (United States)

    Cruz-Oliver, Dulce M; Talamantes, Melissa; Sanchez-Reilly, Sandra

    2014-02-01

    Low-income and minority persons, such as Latinos, encounter substantial barriers in accessing effective end-of-life (EOL) care. This study intends to review current evidence on how to deliver EOL care to Latino elders. Literature search in PubMed and Ovid Web sites of articles indexed in Medline (1948-2011), Cochrane (2005-2011), Embase, and PsychInfo (1967-2011) databases. Articles were included if they contained (1) study participants' race/ethnicity, (2) adults or population older than 60 years, and (3) information related to EOL care. A total of 64 abstracts were reviewed, and 38 articles met the inclusion criteria. After reviewing the quality of evidence, 4 themes were identified and summarized: EOL preferences, hospice, Latino culture, and caregiving. Latino elders have traditional acculturation practices, face EOL decisions with family support, and, if educated, are receptive toward hospice and caregiver support.

  10. The role of advance directives in end-of-life decisions in Austria: survey of intensive care physicians

    Directory of Open Access Journals (Sweden)

    Schopper Andrea

    2010-10-01

    Full Text Available Abstract Background Currently, intensive care medicine strives to define a generally accepted way of dealing with end-of-life decisions, therapy limitation and therapy discontinuation. In 2006 a new advance directive legislation was enacted in Austria. Patients may now document their personal views regarding extension of treatment. The aim of this survey was to explore Austrian intensive care physicians' experiences with and their acceptance of the new advance directive legislation two years after enactment (2008. Methods Under the aegis of the OEGARI (Austrian Society of Anaesthesiology, Resuscitation and Intensive Care an anonymised questionnaire was sent to the medical directors of all intensive care units in Austria. The questions focused on the physicians' experiences regarding advance directives and their level of knowledge about the underlying legislation. Results There were 241 questionnaires sent and 139 were turned, which was a response rate of 58%. About one third of the responders reported having had no experience with advance directives and only 9 directors of intensive care units had dealt with more than 10 advance directives in the previous two years. Life-supporting measures, resuscitation, and mechanical ventilation were the predominantly refused therapies, wishes were mainly expressed concerning pain therapy. Conclusion A response rate of almost 60% proves the great interest of intensive care professionals in making patient-oriented end-of-life decisions. However, as long as patients do not make use of their right of co-determination, the enactment of the new law can be considered only a first important step forward.

  11. The Association Between Home Palliative Care Services and Quality of End-of-Life Care Indicators in the Province of Québec.

    Science.gov (United States)

    Gagnon, Bruno; Nadeau, Lyne; Scott, Susan; Dumont, Serge; MacDonald, Neil; Aubin, Michèle; Mayo, Nancy

    2015-07-01

    In Canada, governments have increased spending on home care to promote better end-of-life care. In the province of Québec, Canada, home palliative care (PC) services (HPCS) are provided by Public Local Community-Based Health Care Service providers (Centres Locaux de Services Communautaires [CLSC]) with universal coverage. Accordingly, there should be no regional variations of these services and their effect on quality of end-of-life PC (QEoLPC) indicators. To test if all the CLSCs provided the same level of HPCS to cancer patients in the province of Québec, Canada, and the association between level of HPCS and QEoLPC indicators. Characteristics of 52,316 decedents with cancer were extracted from administrative databases between 2003 and 2006. Two gender-specific "adjusted performance of CLSCs in delivering HPCS" models were created using gender-specific hierarchical regression adjusted for patient and CLSC neighborhood characteristics. Using the same approach, the strength of the association between the adjusted performance of CLSCs in delivering HPCS and the QEoLPC indicators was estimated. Overall, 27,255 (52.1%) decedents had at least one HPCS. Significant variations in the adjusted performance of CLSC in delivering HPCS were found. Higher performance led to a lower proportion of men having more than one emergency room visit during the last month of life (risk ratio [RR] 0.924; 95% CI 0.867-0.985), and for women, a higher proportion dying at home (RR 2.255; 95% CI 1.703-2.984) and spending less time in hospital (RR 0.765; 95% CI 0.692-0.845). Provision of HPCS remained limited in Québec, but when present, they were associated with improved QEoLPC indicators. Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  12. [End of life and vulnerability, a public health issue].

    Science.gov (United States)

    Boucomont, Aude

    2016-02-01

    End of life and precarity, two words which were linked by the French national observatory for end of life care in its work carried out in 2014. The study provided an overview of current support practices in different areas, highlighting certain lessons to be learned and making recommendations to the different partners involved. Copyright © 2015 Elsevier Masson SAS. All rights reserved.

  13. The particularity of dignity: relational engagement in care at the end of life

    NARCIS (Netherlands)

    Pols, J.; Pasveer, B.; Willems, D.

    This paper articulates dignity as relational engagement in concrete care situations. Dignity is often understood as an abstract principle that represents inherent worth of all human beings. In actual care practices, this principle has to be substantiated in order to gain meaning and inform care

  14. Enhancing the Empathic Connection: Using Action Methods to Understand Conflicts in End-of-Life Care

    Directory of Open Access Journals (Sweden)

    Silvia Tanzi

    2014-05-01

    Full Text Available Empathy is a core feature of patient-centered care. It enables practitioners to better understand the patient and family concerns that are key to patient and family satisfaction, prevention of anxiety and depression, and provider empowerment. Current methods of teaching communication skills do not specifically focus on enhancing the ability to “stand in the patient's shoes” as a way of connecting with the patient and/or family experience and understanding feelings that may be a source of conflict with providers. In this paper, we present a model for deepening empathic understanding based upon action methods (role-reversal and doubling derived from psychodrama and sociodrama. We describe these techniques and illustrate how they can be used to identify hidden emotions and attitudes and reveal that which the patient and family member may be thinking or feeling but be afraid to say. Finally, we present data showing that these methods were valuable to participants in enhancing their professional experience and skills.

  15. Enhancing the Empathic Connection: Using Action Methods to Understand Conflicts in End-of-Life Care

    Science.gov (United States)

    Tanzi, Silvia; Biasco, Guido; Baile, Walter F.

    2014-01-01

    Empathy is a core feature of patient-centered care. It enables practitioners to better understand the patient and family concerns that are key to patient and family satisfaction, prevention of anxiety and depression, and provider empowerment. Current methods of teaching communication skills do not specifically focus on enhancing the ability to “stand in the patient's shoes” as a way of connecting with the patient and/or family experience and understanding feelings that may be a source of conflict with providers. In this paper, we present a model for deepening empathic understanding based upon action methods (role-reversal and doubling) derived from psychodrama and sociodrama. We describe these techniques and illustrate how they can be used to identify hidden emotions and attitudes and reveal that which the patient and family member may be thinking or feeling but be afraid to say. Finally, we present data showing that these methods were valuable to participants in enhancing their professional experience and skills. PMID:28725796

  16. Applying feminist, multicultural, and social justice theory to diverse women who function as caregivers in end-of-life and palliative home care.

    Science.gov (United States)

    Mackinnon, Christopher J

    2009-12-01

    Women are largely responsible for providing care to terminally ill family members at home. The goal of this review is to conceptualize diverse women's experiences in palliative home care from feminist, multicultural, and social justice perspectives. Peer-reviewed manuscripts were identified using the following databases: CIMAHL, psycINFO, and pubMED. The following search terms were used: women/mothers/daughters, Caregiving, family caregivers, feminism, culture, multiculturalism, and palliative home care. Article reference lists were also reviewed. The majority of penitent articles which formed the basis for the arguments presented were drawn from nursing, medicine, and counseling psychology scholarship. The application of feminist, multicultural, and social justice theory brings to attention several potential issues female caregivers may experience. First, there exist diverse ways in which women's Caregiving is manifested that tend to correspond with variations in culture, relationship, and age. Second, it is important to attend to changing expectations placed on women as a result of Caregiving at the end of life. Third, the changing power dynamics women may experience in end of life Caregiving are very complex. The principle finding of the review was the highlighting of potential risks that culturally diverse female caregivers are likely to face at the end of life. The application of social justice theory provides a number of implications for practice and policy. Specifically, the identifying significant concerns regarding female caregivers in palliative home care, as well as suggesting ways to appropriately attend to these concerns, and oppression of women is less likely to be perpetuated, specific areas for future research in this domain are identified.

  17. Rethinking priorities: experience of an educational initiative to change attitudes, behaviours and clinical practice in end-of-life care.

    Science.gov (United States)

    Edwards, Annette; Barros D'Sa, Viv; Hicks, Fiona

    2017-05-08

    To implement the National End of Life Care strategy and enable more people to express and achieve their preferences about care at the end of life, senior clinicians outside palliative medicine need to make it a routine part of their practice. However, it is acknowledged that recognising that people are entering the last phase of their illness is not always straightforward, and having conversations about aims of treatment and planning for future care may not be easy. In order to begin to address these challenges, funding was sought from the Yorkshire and the Humber Strategic Health Authority (SHA), and subsequently Health Education England, Yorkshire and the Humber (HEEYH), to pilot a development programme in 2 acute trusts. 2 palliative medicine consultants shared the trainer role at each site, supporting hospital consultants from a range of specialties, with a GP to give a community perspective. The programme involved individual clinicians identifying their own learning needs and specific issues for end-of-life care in their patients. The group met together monthly in action learning sets to discuss issues in a safe yet challenging environment. Following evaluation using a combination of training needs analyses, feedback questionnaires, audits and service evaluations, it was modified slightly and repiloted in 2 further trusts as 'Rethinking Priorities'. This paper describes the programme and its outcomes, especially in relation to participants' learning, service development and leadership. It also highlights the challenges, including different learning styles, the concept of action learning, obtaining funding and dedicated time, and how to evaluate the effectiveness of a programme. Overall, it suggests that an educational initiative based on clinicians identifying their own learning needs, and using an action learning approach to explore issues with other colleagues, with the addition of some targeted sessions, can result in positive change in knowledge, behaviour

  18. Holistic models for end of life care: establishing the place of culture

    NARCIS (Netherlands)

    Selman, L.; Speck, P.; Barfield, R.C.; Gysels, M.; Higginson, I.J.; Harding, R.

    2014-01-01

    Introduction This article presents a holistic model for clinical palliative care and research which expands and improves previous models by fully recognizing the place of culture in illness. Methods Literature review and philosophical enquiry. Results Holistic models of patient care are essential to

  19. In defiance of death: exposing the real costs of end-of-life care

    National Research Council Canada - National Science Library

    Rockwell, Lindsay E; Scott, Missy; Fisher, Kenneth A

    2008-01-01

    ... Questionnaires 121viii CONTENTS Appendix 2: Family-Physician Interactions 133 Appendix 3: The Baby K Case 135 Appendix 4: In Support of Appropriate Care Committees 143 Appendix 5: American Medical Ed...

  20. Randomized Trial of Communication Facilitators to Reduce Family Distress and Intensity of End-of-Life Care.

    Science.gov (United States)

    Curtis, J Randall; Treece, Patsy D; Nielsen, Elizabeth L; Gold, Julia; Ciechanowski, Paul S; Shannon, Sarah E; Khandelwal, Nita; Young, Jessica P; Engelberg, Ruth A

    2016-01-15

    Communication with family of critically ill patients is often poor and associated with family distress. To determine if an intensive care unit (ICU) communication facilitator reduces family distress and intensity of end-of-life care. We conducted a randomized trial at two hospitals. Eligible patients had a predicted mortality greater than or equal to 30% and a surrogate decision maker. Facilitators supported communication between clinicians and families, adapted communication to family needs, and mediated conflict. Outcomes included depression, anxiety, and post-traumatic stress disorder (PTSD) among family 3 and 6 months after ICU and resource use. We identified 488 eligible patients and randomized 168. Of 352 eligible family members, 268 participated (76%). Family follow-up at 3 and 6 months ranged from 42 to 47%. The intervention was associated with decreased depressive symptoms at 6 months (P = 0.017), but there were no significant differences in psychological symptoms at 3 months or anxiety or PTSD at 6 months. The intervention was not associated with ICU mortality (25% control vs. 21% intervention; P = 0.615) but decreased ICU costs among all patients (per patient: $75,850 control, $51,060 intervention; P = 0.042) and particularly among decedents ($98,220 control, $22,690 intervention; P = 0.028). Among decedents, the intervention reduced ICU and hospital length of stay (28.5 vs. 7.7 d and 31.8 vs. 8.0 d, respectively; P Communication facilitators may be associated with decreased family depressive symptoms at 6 months, but we found no significant difference at 3 months or in anxiety or PTSD. The intervention reduced costs and length of stay, especially among decedents. This is the first study to find a reduction in intensity of end-of-life care with similar or improved family distress. Clinical trial registered with www.clinicaltrials.gov (NCT 00720200).

  1. Integrating Speech-Language Pathology Services in Palliative End-of-Life Care

    Science.gov (United States)

    Pollens, Robin D.

    2012-01-01

    Clinical speech-language pathologists (SLPs) may receive referrals to consult with teams serving patients who have a severe and/or terminal disease. Palliative care focuses on the prevention or relief of suffering to maximize quality of life for these patients and their families. This article describes how the role of the SLP in palliative care…

  2. Creating Discursive Order at the End of Life: The Role of Genres in Palliative Care Settings

    Science.gov (United States)

    Schryer, Catherine; McDougall, Allan; Tait, Glendon R.; Lingard, Lorelei

    2012-01-01

    This article investigates an emerging practice in palliative care: dignity therapy. Dignity therapy is a psychotherapeutic intervention that its proponents assert has clinically significant positive impacts on dying patients. Dignity therapy consists of a physician asking a patient a set of questions about his or her life and returning to the…

  3. An interprofessional workshop for students to improve communication and collaboration skills in end-of-life care.

    Science.gov (United States)

    Erickson, Jeanne M; Blackhall, Leslie; Brashers, Valentina; Varhegyi, Nikole

    2015-12-01

    Interprofessional care is critical for patients at the end of life (EOL), but programs to teach communication skills to medical and nursing students are rare. The aims of this study were to determine whether an interprofessional workshop improves (1) student attitudes toward teamwork and (2) self-efficacy for communicating in difficult situations. Nursing and medical students attended a workshop with collaborative role play of an EOL conversation. Before the workshop, students showed different attitudes toward teamwork and collaboration and varying levels of confidence about communication skills. After the workshop, both groups reported more positive attitudes toward teamwork but a mixed picture of confidence in communication. Experiential interprofessional education workshops enhance perceptions about the benefits of teamwork, but further teaching and evaluation methods are needed to maximize the effectiveness. © The Author(s) 2014.

  4. Involvement of a Case Manager in Palliative Care Reduces Hospitalisations at the End of Life in Cancer Patients; A Mortality Follow-Back Study in Primary Care.

    Science.gov (United States)

    van der Plas, Annicka G M; Vissers, Kris C; Francke, Anneke L; Donker, Gé A; Jansen, Wim J J; Deliens, Luc; Onwuteaka-Philipsen, Bregje D

    2015-01-01

    Case managers have been introduced in primary palliative care in the Netherlands; these are nurses with expertise in palliative care who offer support to patients and informal carers in addition to the care provided by the general practitioner (GP) and home-care nurse. To compare cancer patients with and without additional support from a case manager on: 1) the patients' general characteristics, 2) characteristics of care and support given by the GP, 3) palliative care outcomes. This article is based on questionnaire data provided by GPs participating in two different studies: the Sentimelc study (280 cancer patients) and the Capalca study (167 cancer patients). The Sentimelc study is a mortality follow-back study amongst a representative sample of GPs that monitors the care provided via GPs to a general population of end-of-life patients. Data from 2011 and 2012 were analysed. The Capalca study is a prospective study investigating the implementation and outcome of the support provided by case managers in primary palliative care. Data were gathered between March 2011 and December 2013. The GP is more likely to know the preferred place of death (OR 7.06; CI 3.47-14.36), the place of death is more likely to be at the home (OR 2.16; CI 1.33-3.51) and less likely to be the hospital (OR 0.26; CI 0.13-0.52), and there are fewer hospitalisations in the last 30 days of life (none: OR 1.99; CI 1.12-3.56 and one: OR 0.54; CI 0.30-0.96), when cancer patients receive additional support from a case manager compared with patients receiving the standard GP care. Involvement of a case manager has added value in addition to palliative care provided by the GP, even though the role of the case manager is 'only' advisory and he or she does not provide hands-on care or prescribe medication.

  5. Moving toward a national policy on palliative and end of life care

    Directory of Open Access Journals (Sweden)

    Stanley C Macaden

    2011-01-01

    Full Text Available Indian Palliative Care has developed over the past 17 years but it has also developed disabilities due to lack of a National Policy and hence has compromised its effectiveness. It is true that we have come a long way but we still have many miles to go and we will get there only if we have a proper road map and sign posts. This article attempts to suggest some specific measures in establishing such a National Policy

  6. Opinions about the new law on end-of-life issues in a sample of french patients receiving palliative care.

    Science.gov (United States)

    Boulanger, Augustin; Chabal, Théo; Fichaux, Marie; Destandau, Mireille; La Piana, Jean Marc; Auquier, Pascal; Baumstarck, Karine; Salas, Sébastien

    2017-01-21

    In February 2nd 2016, the French government enacted the Claeys-Leonetti law that forbade euthanasia and established the right to deep and continuous sedation for end-of-life patients. Moreover, the law also obliges clinicians to abide by any advance directives regarding treatment and investigation, except in cases where they are "obviously inappropriate" in a given medical situation, or in cases of emergency, in order to allow medical staff to take time to assess the patient's situation. Artificial feeding and hydration are considered as treatment. The aim of this report is to investigate individuals receiving palliative care about their opinion about euthanasia, about advance directives, about the right to deep and continuous sedation, and the right to stopping artificial feeding and hydration. The study was an opinion survey conducted among patients treated in two different palliative care institutions: a palliative care unit at the University Hospital (Timone, Marseille, France) and a non-profit association palliative care home ("La Maison", Gardanne, France). Face-to-face interviews were performed by two investigators. The survey included sociodemographics, clinical data, and opinions about euthanasia, deep and continuous sedation, stopping artificial feeding and hydration, and advance directives. Forty patients were interviewed. The mean age was 59.8 years (standard deviation 12). Fifty three percent reported opposition to legalized euthanasia. Eighty three percent were in favour of the right to deep and continuous sedation in patients with refractory pain, 75% when it concerns a patient unable to express their wishes, and 68% when the patient decides to stop vital treatment. Fifty eight percent reported that artificial nutrition and hydration should be considered as care. Fifty eight percent of the patients interviewed would like to see doctors follow the express wishes contained in advance care directives and 53% that advance directives should be subject to

  7. Potential Conflicting Interests for Surgeons in End-of-Life Care.

    Science.gov (United States)

    Golden, Adam G; Silverman, Michael A; Heller, Andrew; Loyal, Michael; Cendan, Juan

    2015-11-01

    Thirty-day mortality represents a variable that is commonly used to measure the quality of surgical care. The definition of 30-day mortality and the application of a risk adjustment to its measurement may vary among different organizations comparing physician quality. In the midst of this confusion, conflicting interests arise for surgeons who must weigh the potential benefit of surgical interventions to individual patients versus the potential loss of access by future patients should 30-day mortality ratings be adversely affected. Similarly, surgeons may become adversely impacted by the lack of compensation from avoiding "high-risk" cases, but might face a more severe financial impact if they have a higher mortality rating compared to their peers. © The Author(s) 2014.

  8. Palliative and end of life care communication as emerging priorities in postgraduate medical education

    Directory of Open Access Journals (Sweden)

    Amanda Roze des Ordons

    2016-04-01

    Conclusions: Our work expands on previous research describing needs for postgraduate education in palliative and EOL communication to include the importance of support, culture change, and faculty development, and provides insight into why such needs exist.

  9. Sexuality and aging: a focus on lesbian, gay, bisexual, and transgender (LGBT) needs in palliative and end of life care.

    Science.gov (United States)

    Griebling, Tomas L

    2016-03-01

    Sex and sexuality are core components of the human experience. Many older adults and people with terminal illness still consider sexuality important in their lives. The palliative care experiences of lesbian, gay, bisexual, and transgender (LGBT) persons are unique in a number of important ways with regard to sexuality and sexual expression. To date, there has been relatively limited scholarly research on sexual health needs of people in palliative care and near end of life, and an even greater paucity of data specifically about sexual minorities. Forms of sexual expression may change with advancing age and illness. Physical intimacy and emotional connection may take on greater roles compared with more traditional concepts of sexual activity. Several recent studies have examined sexual health in palliative care and a few have examined LGBT cohorts. Advances in public policy, including the recent US Supreme Court decision regarding marriage equality, have continued to shape the cultural landscape for LGBT people. This article reviews recent literature with considerations for future research. Sexuality and intimacy remain important for many people facing terminal illness. LGBT people face unique challenges with regard to sexuality during palliative care. Clinicians should work to avoid heteronormative stereotypes and focus on goals of care to enhance quality of life for all patients.

  10. Decision Making Regarding the Place of End-of-Life Cancer Care: The Burden on Bereaved Families and Related Factors.

    Science.gov (United States)

    Yamamoto, Sena; Arao, Harue; Masutani, Eiko; Aoki, Miwa; Kishino, Megumi; Morita, Tatsuya; Shima, Yasuo; Kizawa, Yoshiyuki; Tsuneto, Satoru; Aoyama, Maho; Miyashita, Mitsunori

    2017-05-01

    Decision making regarding the place of end-of-life (EOL) care is an important issue for patients with terminal cancer and their families. It often requires surrogate decision making, which can be a burden on families. To explore the burden on the family of patients dying from cancer related to the decisions they made about the place of EOL care and investigate the factors affecting this burden. This was a cross-sectional mail survey using a self-administered questionnaire. Participants were 700 bereaved family members of patients with cancer from 133 palliative care units in Japan. The questionnaire covered decisional burdens, depression, grief, and the decision-making process. Participants experienced emotional pressure as the highest burden. Participants with a high decisional burden reported significantly higher scores for depression and grief (both P decision making without knowing the patient's wishes and values (P making the decision because of a due date for discharge from a former facility or hospital (P = 0.005). Decision making regarding the place of EOL care was recalled as burdensome for family decision makers. An early decision-making process that incorporates sharing patients' and family members' values that are relevant to the desired place of EOL care is important. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  11. End-of-life care and organ donation in South Africa – it's time for ...

    African Journals Online (AJOL)

    South Africa (SA)'s healthcare system has the expertise and facili ties to provide solidorgan transplantation for ... we achieved a chronic dialysis treatment rate of 178 per million population, with most of the expansion of this ... public education strategies, simultaneously targeting screening and prevention programmes, while ...

  12. Patterns of dignity-related distress at the end of life: a cross-sectional study of patients with advanced cancer and care home residents.

    Science.gov (United States)

    Hall, Sue; Davies, Joanna M; Gao, Wei; Higginson, Irene J

    2014-10-01

    To provide effective palliative care in different settings, it is important to understand and identify the sources of dignity-related distress experienced by people nearing the end of life. To describe and compare the sources of dignity-related distress reported by cancer patients and care home residents. Secondary analysis of merged data. Participants completed the Patient Dignity Inventory (assessing 25 sources of dignity-related distress) and measures of quality of life and depression. A total of 45 adult patients with advanced cancer referred to hospital-based palliative care teams in London, United Kingdom, and 60 residents living in one of 15 care homes in London. Care home residents were older and had poorer functioning. Both groups reported a wide range of dignity-related problems. Although the number or problems reported on the Patient Dignity Inventory was similar for the two groups (mean (standard deviation): 5.9 (5.5) for cancer patients and 4.1 (4.3) for care home residents, p = 0.07), there was a tendency for more cancer patients to report some existential problems. Experiencing physically distressing symptoms and functional limitations were prevalent problems for both groups. Patient Dignity Inventory problems were associated with poorer performance status and functioning for residents, with age and cognitive impairment for cancer patients and with poorer quality of life and depression for both groups. Although characteristics of the samples differed, similarities in the dignity-related problems reported by cancer patients and care home residents support research suggesting a common pathway towards death for malignant and non-malignant disease. A wider understanding of the sources of dignity-related distress would help clinicians provide more effective end-of-life care. © The Author(s) 2014.

  13. Male-female patient differences in association between end-of-life discussions and receipt of intensive care near death

    Science.gov (United States)

    Sharma, Rashmi K.; Prigerson, Holly G.; Penedo, Frank J.; Maciejewski, Paul K.

    2015-01-01

    Background Patient gender plays a significant role in patient-physician communication, patient illness understanding and aggressiveness of end of life (EoL) care. However, little is known about the extent to which gender differences in the effects of EoL discussions on EoL care contribute to gender differences in EoL care. The present study aims to determine if gender differences exist in receipt of intensive care unit (ICU) care near death and in the association between EoL discussions and receipt of ICU EoL care. Methods Multi-site, prospective, cohort study of patients (N=353) with metastatic cancers, identified as terminally ill at study enrollment and interviewed a median of 4.1 months before their deaths. Postmortem chart reviews and caregiver interviews documented ICU stays in the last week of life. Results Patients who received ICU care at the EoL were more likely to be male than those who did not (73% male vs. 52% male, p=0.02). Adjusting for potential confounds, male patients reporting an EoL discussion were less likely to have an ICU stay in the last week of life than male patients with no EoL discussion (AOR=0.26, 95% CI 0.07–0.91; p=0.04). There was no association between EoL discussions and ICU stays near death among female patients. Conclusions Men with advanced cancers are more likely than women to receive aggressive, non-beneficial, ICU care near death. Gender differences in effects of EoL discussions on EoL care likely contribute to, and may even explain, gender differences in receipt of ICU care in the last week of life. PMID:25975179

  14. Critically examining diversity in end-of-life family caregiving: implications for equitable caregiver support and Canada’s Compassionate Care Benefit

    Directory of Open Access Journals (Sweden)

    Giesbrecht Melissa

    2012-11-01

    Full Text Available Abstract Introduction Family (i.e., unpaid caregiving has long been thought of as a ‘woman’s issue’, which ultimately results not only in gendered, but also financial and health inequities. Because of this, gender-based analyses have been prioritized in caregiving research. However, trends in current feminist scholarship demonstrate that gender intersects with other axes of difference, such as culture, socio-economic status, and geography to create diverse experiences. In this analysis we examine how formal front-line palliative care providers understand the role of such diversities in shaping Canadian family caregivers’ experiences of end-of-life care. In doing so we consider the implications of these findings for a social benefit program aimed at supporting family caregivers, namely the Compassionate Care Benefit (CCB. Methods This analysis contributes to a utilization-focused evaluation of Canada’s CCB, a social program that provides job security and limited income assistance to Canadian family caregivers who take a temporary leave from employment to provide care for a dying family member at end-of-life. Fifty semi-structured phone interviews with front-line palliative care providers from across Canada were conducted and thematic diversity analysis of the transcripts ensued. Results Findings reveal that experiences of caregiving are not homogenous and access to services and supports are not universal across Canada. Five axes of difference were commonly raised by front-line palliative care providers when discussing important differences in family caregivers’ experiences: culture, gender, geography, lifecourse stage, and material resources. Our findings reveal inequities with regard to accessing needed caregiver services and resources, including the CCB, based on these axes of difference. Conclusions We contend that without considering diversity, patterns in vulnerability and inequity are overlooked, and thus continually reinforced

  15. The Right Place at the Right Time: Medical Oncology Outpatients' Perceptions of Location of End-of-Life Care.

    Science.gov (United States)

    Waller, Amy; Sanson-Fisher, Rob; Zdenkowski, Nicholas; Douglas, Charles; Hall, Alix; Walsh, Justin

    2018-01-01

    Background: Helping people achieve their preferred location of care is an important indicator of quality end-of-life (EOL) care. Using a sample of Australian medical oncology outpatients, this study examined (1) their preferred location of EOL care; (2) their perceived benefits and worries of receiving care in that location; (3) the percentage who had discussed preferences with their doctor and/or support person; and (4) whether they wanted their doctor to ask them where they wanted to die. Methods: Adults with a confirmed diagnosis of cancer were approached between September 2015 and January 2016 in the waiting room of an Australian oncology outpatient clinic. Consenting participants completed a home-based pen-and-paper survey indicating preferred location of care, perceived benefits and worries of that location, whether they had discussed preferences with their doctors, and whether they were willing to be asked about their preferences. Results: A total of 203 patients returned the survey (47% of those eligible). Less than half preferred to be cared for at home (47%), 34% preferred a hospice/palliative care unit, and 19% preferred the hospital. Common benefits and worries associated with locations included perceived burden on others, familiarity of environment, availability of expert medical care, symptom management, and likelihood of having wishes respected. More patients had discussed preferences with their support persons (41%) than doctors (7%). Most wanted a doctor to ask them about preferred location of care (87%) and thought it was important to die in the location of their choice (93%). Conclusions: Patients were willing to have clinicians to ask them where they wanted to die, although few had discussed their preferences with doctors. Although home was the most preferred location for many patients, the overall variation suggests that clinicians should adopt a systematic approach to eliciting patient preferences. Copyright © 2018 by the National

  16. Time from last chemotherapy to death and its correlation with the end of life care in a referral hospital

    Science.gov (United States)

    Karim, Syed Mustafa; Zekri, Jamal; Abdelghany, Ehab; Dada, Reyad; Munsoor, Husna; Ahmad, Imran

    2015-01-01

    Background: A substantial number of cancer patients receive chemotherapy until the end of life (EoL). Various factors have been shown to be associated with receipt of chemotherapy until near death. In this study, we determine our average time from last chemotherapy to death (TLCD) and explore different factors that may be associated with decreased TLCD. Materials and Methods: A retrospective review of medical records of adult cancer patients who received chemotherapy during their illness and died in our hospital between January 2010 and January 2012 was conducted. Chi-square test and t-test were used to examine the correlation between selected factors and use of chemotherapy within 60 days of death. Multivariate analysis was used to test independent significance of factors testing positive in univariate analysis. Kaplan-Meier method was used to perform survival analysis. Results: Of the 115 cancer patients who died in the hospital, 41 (35.6%) had TLCD of 60 days or less. Patients with better performance status and those dying under medical oncology service were more likely to be in this group of patients. Univariate analysis showed that these patients were less likely to have palliative care involvement, were more likely to die of treatment related causes, and more likely to have died in the Intensive Care Unit. Multivariate analysis confirmed lack of palliative care involvement and better performance status as independent factors for TLCD less than 60 days. Survival analyses showed that patients with palliative care involvement and those dying under palliative care service were likely to have significantly longer TLCD. Conclusions: Cancer patients who have no involvement of palliative care team in their management tend to receive chemotherapy near the EoL, have more aggressive EoL care, and have higher risk of dying die from treatment related complications. Palliative care should be involved early in the care of cancer patients. PMID:25810576

  17. After the Liverpool Care Pathway—development of heuristics to guide end of life care for people with dementia: protocol of the ALCP study

    Science.gov (United States)

    Davies, N; Manthorpe, J; Sampson, E L; Iliffe, S

    2015-01-01

    Introduction End of life care guidance for people with dementia is lacking and this has been made more problematic in England with the removal of one of the main end of life care guidelines which offered some structure, the Liverpool Care Pathway. This guidance gap may be eased with the development of heuristics (rules of thumb) which offer a fast and frugal form of decision-making. Objective To develop a toolkit of heuristics (rules of thumb) for practitioners to use when caring for people with dementia at the end of life. Method and analysis A mixed-method study using a co-design approach to develop heuristics in three phases. In phase 1, we will conduct at least six focus groups with family carers, health and social care practitioners from both hospital and community care services, using the ‘think-aloud’ method to understand decision-making processes and to develop a set of heuristics. The focus group topic guide will be developed from the findings of a previous study of 46 interviews of family carers about quality end-of-life care for people with dementia and a review of the literature. A multidisciplinary development team of health and social care practitioners will synthesise the findings from the focus groups to devise and refine a toolkit of heuristics. Phase 2 will test the use of heuristics in practice in five sites: one general practice, one community nursing team, one hospital ward and two palliative care teams working in the community. Phase 3 will evaluate and further refine the toolkit of heuristics through group interviews, online questionnaires and semistructured interviews. Ethics and dissemination This study has received ethical approval from a local NHS research ethics committee (Rec ref: 15/LO/0156). The findings of this study will be presented in peer-reviewed publications and national and international conferences. PMID:26338688

  18. After the Liverpool Care Pathway--development of heuristics to guide end of life care for people with dementia: protocol of the ALCP study.

    Science.gov (United States)

    Davies, N; Manthorpe, J; Sampson, E L; Iliffe, S

    2015-09-02

    End of life care guidance for people with dementia is lacking and this has been made more problematic in England with the removal of one of the main end of life care guidelines which offered some structure, the Liverpool Care Pathway. This guidance gap may be eased with the development of heuristics (rules of thumb) which offer a fast and frugal form of decision-making. To develop a toolkit of heuristics (rules of thumb) for practitioners to use when caring for people with dementia at the end of life. A mixed-method study using a co-design approach to develop heuristics in three phases. In phase 1, we will conduct at least six focus groups with family carers, health and social care practitioners from both hospital and community care services, using the 'think-aloud' method to understand decision-making processes and to develop a set of heuristics. The focus group topic guide will be developed from the findings of a previous study of 46 interviews of family carers about quality end-of-life care for people with dementia and a review of the literature. A multidisciplinary development team of health and social care practitioners will synthesise the findings from the focus groups to devise and refine a toolkit of heuristics. Phase 2 will test the use of heuristics in practice in five sites: one general practice, one community nursing team, one hospital ward and two palliative care teams working in the community. Phase 3 will evaluate and further refine the toolkit of heuristics through group interviews, online questionnaires and semistructured interviews. This study has received ethical approval from a local NHS research ethics committee (Rec ref: 15/LO/0156). The findings of this study will be presented in peer-reviewed publications and national and international conferences. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

  19. Sir James Reid and the Death of Queen Victoria: An Early Model for End-of-Life Care.

    Science.gov (United States)

    Abrams, Robert C

    2015-12-01

    An appraisal of the last ten days of Queen Victoria's life, viewed primarily from the perspective of her personal physician, Sir James Reid, is presented. Sir James' clinical encounters with his patient and the Royal Family are examined to reveal his strategic and medical thinking and gauge his level of success in basic palliative aims. It was found that the lack of effective medical interventions, tensions within the Royal Family, the importance of his post to Sir James' professional career, and the political ramifications unavoidably connected with the illness of a head of state, all presented challenges to Reid's efforts to ease the physical and emotional pain of Queen Victoria's dying. Key features of Sir James' approach included reliance on physician-patient and physician-family relationships, emphasis on emotional support for the patient, and the careful selection of interventions for the family. In the first years of the 20th century, an era when the contemporary concepts of palliative care, hospice, and family dynamics did not exist, Sir James' management of the Queen's final illness suggested an early model for end-of-life care. By the end of Queen Victoria's life, Sir James was seen to have preserved his patient's comfort and dignity, at the same time advancing family and societal acceptance of the death of this matriarchal figure. © The Author 2014. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

  20. End-of-life chemotherapy is associated with poor survival and aggressive care in patients with small cell lung cancer.

    Science.gov (United States)

    Zhu, Yingming; Tang, Ke; Zhao, Fen; Zang, Yuanwei; Wang, Xiaodong; Li, Zhenxiang; Sun, Xindong; Yu, Jinming

    2018-05-29

    Concerns regarding end-of-life (EOL) chemotherapy are being increasingly raised. Tumor chemosensitivity may influence the decision for aggressive chemotherapy near the EOL. Data on EOL chemotherapy in highly chemosensitive tumors, such as small cell lung cancer (SCLC), are scarce. A total of 143 SCLC decedents were consecutively included. Data about clinical factors and treatment modalities were obtained from the electronic medical records. The relationships among EOL chemotherapy, clinical features, overall survival (OS), and aggressive care were investigated. About 64% of patients had chemosensitive disease. In total, 30.8 and 16.1% of patients received EOL chemotherapy within the last 1 and 2 months of life, respectively. Younger age was associated with a higher rate of EOL chemotherapy. We determined that EOL chemotherapy was related to inferior OS not only in the entire group, but also in the chemosensitive subgroup. Furthermore, more intensive care was observed among patients who underwent EOL chemotherapy compared with those who did not. EOL chemotherapy was correlated with shorter survival and more aggressive care in patients with SCLC. More research is needed to develop indications for terminating palliative chemotherapy, to help physicians and patients with their difficult choices.

  1. Negotiated reorienting: a grounded theory of nurses' end-of-life decision-making in the intensive care unit.

    Science.gov (United States)

    Gallagher, Ann; Bousso, Regina Szylit; McCarthy, Joan; Kohlen, Helen; Andrews, Tom; Paganini, Maria Cristina; Abu-El-Noor, Nasser Ibrahim; Cox, Anna; Haas, Margit; Arber, Anne; Abu-El-Noor, Mysoon Khalil; Baliza, Michelle Freire; Padilha, Katia Grillo

    2015-04-01

    Intensive care units (ICUs) focus on treatment for those who are critically ill and interventions to prolong life. Ethical issues arise when decisions have to be made regarding the withdrawal and withholding of life-sustaining treatment and the shift to comfort and palliative care. These issues are particularly challenging for nurses when there are varying degrees of uncertainty regarding prognosis. Little is known about nurses' end-of-life (EoL) decision-making practice across cultures. To understand nurses' EoL decision-making practices in ICUs in different cultural contexts. We collected and analysed qualitative data using Grounded Theory. Interviews were conducted with experienced ICU nurses in university or hospital premises in five countries: Brazil, England, Germany, Ireland and Palestine. Semi-structured interviews were conducted with 51 nurses (10 in Brazil, 9 in England, 10 in Germany, 10 in Ireland and 12 nurses in Palestine). They were purposefully and theoretically selected to include nurses having a variety of characteristics and experiences concerning end-of-life (EoL) decision-making. The study used grounded theory to inform data collection and analysis. Interviews were facilitated by using key questions. The comparative analysis of the data within and across data generated by the different research teams enabled researchers to develop a deeper understanding of EoL decision-making practices in the ICU. Ethical approval was granted in each of the participating countries and voluntary informed consent obtained from each participant. The core category that emerged was 'negotiated reorienting'. Whilst nurses do not make the 'ultimate' EoL decisions, they engage in two core practices: consensus seeking (involving coaxing, information cuing and voice enabling); and emotional holding (creating time-space and comfort giving). There was consensus regarding the core concept and core practices employed by nurses in the ICUs in the five countries. However

  2. Living and dying: responsibility for end-of-life care in care homes without on-site nursing provision - a prospective study

    OpenAIRE

    Handley, M; Goodman, C; Froggatt, K; Mathie, E; Gage, H; Manthorpe, J; Barclay, S; Crang, C; Iliffe, S

    2014-01-01

    The aim of the study was to describe the expectations and experiences of end-of-life care of older people resident in care homes, and how care home staff and the healthcare practitioners who visited the care home interpreted their role. A mixed-method design was used. The everyday experience of 121 residents from six care homes in the East of England were tracked; 63 residents, 30 care home staff with assorted roles and 19 National Health Service staff from different disciplines were intervie...

  3. Perceived outcomes of music therapy with Body Tambura in end of life care - a qualitative pilot study.

    Science.gov (United States)

    Teut, Michael; Dietrich, Cordula; Deutz, Bernhard; Mittring, Nadine; Witt, Claudia M

    2014-04-07

    In recent years, music therapy is increasingly used in palliative care. The aim of this pilot study was to record and describe the subjective experiences of patients and their relatives undergoing music therapy with a Body Tambura in a German hospice and to develop hypotheses for future studies. In a qualitative interview pilot study, data collection and analyses were performed according to the methodological framework of grounded theory. We included German-speaking patients, or relatives of patients, receiving end of life care in an inpatient hospice setting. 11 persons consisting of 8 patients (age range 51-82 years, 4 male and 4 female) and 3 relatives were treated and interviewed. All patients suffered from cancer in an advanced stage. The most often described subjective experiences were a relaxing and calming effect, sensations that the body feels lighter, and the generation of relaxing images and visualizations. Family members enjoyed listening to the music and felt more connected with the sick family member. Patient reported beneficial aspects. The small sample size could be seen as a limitation. Assessment instruments measuring relaxation, stress, quality of life and should be included in future quantitative studies.

  4. Prior trauma exposure and serious illness at end of life: A national study of children in the US foster care system from 2005 to 2015.

    Science.gov (United States)

    Lindley, Lisa C; Slayter, Elspeth M

    2018-06-08

    Children in foster care suffer with serious illness at end of life. However, the relationship between prior trauma exposure and serious illness has received little empirical attention. The objectives were to examine the prevalence and type of trauma exposure, and investigate the relationship between prior trauma and serious illness among foster children at end of life. We used national longitudinal foster care data. We included children who were less than 18 years with residence in the United States. Serious illness (i.e., physical health, mental/behavioral health, developmental disabilities) was measured via the foster care files. Three measures of prior trauma exposure (i.e., maltreatment, drug/alcohol exposure, psychosocial stressors) were created. Using multivariate logistic regressions, we evaluated the influence of prior trauma on serious illness at end of life, while controlling for demographic, geographic, and foster care support characteristics. Sixty-eight percent of children experienced maltreatment, 28% exposure to parental drug/alcohol misuse, and 39% psychosocial stressors prior to entering foster care. Maltreatment was positively associated with physical health and developmental disabilities, while parental drug/alcohol exposure was inversely related to developmental disabilities. Psychosocial stressors contributed to the prediction of poor physical, mental, and developmental health. These findings suggest that trauma-informed end-of-life care may be a critical need among children in foster care with serious illness. Future directions are discussed, including collaboration between end-of-life clinicians and social service workers and the importance of future research to understand and improve the quality of health at end of life for this underserved population. Copyright © 2018. Published by Elsevier Inc.

  5. A Structured Approach to End-of-Life Decision Making Improves Quality of Care for Patients With Terminal Illness in a Teaching Hospital in Ghana.

    Science.gov (United States)

    Edwin, Ama Kyerewaa; Johnson McGee, Summer; Opare-Lokko, Edwina Addo; Gyakobo, Mawuli Kotope

    2016-03-01

    To determine whether a structured approach to end-of-life decision-making directed by a compassionate interdisciplinary team would improve the quality of care for patients with terminal illness in a teaching hospital in Ghana. A retrospective analysis was done for 20 patients who consented to participate in the structured approach to end-of-life decision-making. Twenty patients whose care did not follow the structured approach were selected as controls. Outcome measures were nociceptive pain control, completing relationships, and emotional response towards dying. These measures were statistically superior in the study group compared to the control group. A structured approach to end-of-life decision-making significantly improves the quality of care for patients with terminal illness in the domains of pain control, completing relationships and emotional responses towards dying. © The Author(s) 2014.

  6. Burden on family carers and difficulty in covering costs of care at the end of life: a cross-national retrospective study via representative networks of general practitioners.

    NARCIS (Netherlands)

    Pivodic, L.; Block, L. van den; Pardon, K.; Miccinesi, G.; Vega, T.; Boffin, N.; Donker, G.; Cancian, M.; Lopéz-Maside, A.; Onwuteaka-Philipsen, B.D.; Deliens, L.

    2013-01-01

    Background: Given a growing number of people with long disease trajectories and a preference for home death, need for family care is expected to increase. However, populationbased data on the prevalence of burden in family carers of people at the end of life and of care-related financial burden are

  7. End-of-life care across Southern Europe: a critical review of cultural similarities and differences between Italy, Spain and Portugal

    NARCIS (Netherlands)

    Meñaca, A.; Evans, N.; Andrew, E.V.W.; Toscani, F.; Finetti, S.; Gómez-Batiste, X.; Higginson, I.J.; Harding, R.; Pool, R.; Gysels, M.H.

    2012-01-01

    Evidence from a range of sources demonstrates that end-of-life (EoL) care practices and preferences vary across countries; culture is consistently one of the main explanations given for this. In order to understand how cultural factors are used to explain similarities and differences in EoL care

  8. End-of-life care for homeless people: A qualitative analysis exploring the challenges to access and provision of palliative care.

    Science.gov (United States)

    Shulman, Caroline; Hudson, Briony F; Low, Joseph; Hewett, Nigel; Daley, Julian; Kennedy, Peter; Davis, Sarah; Brophy, Niamh; Howard, Diana; Vivat, Bella; Stone, Patrick

    2018-01-01

    Being homeless or vulnerably housed is associated with death at a young age, frequently related to medical problems complicated by drug or alcohol dependence. Homeless people experience high symptom burden at the end of life, yet palliative care service use is limited. To explore the views and experiences of current and formerly homeless people, frontline homelessness staff (from hostels, day centres and outreach teams) and health- and social-care providers, regarding challenges to supporting homeless people with advanced ill health, and to make suggestions for improving care. Thematic analysis of data collected using focus groups and interviews. Single homeless people ( n = 28), formerly homeless people ( n = 10), health- and social-care providers ( n = 48), hostel staff ( n = 30) and outreach staff ( n = 10). This research documents growing concern that many homeless people are dying in unsupported, unacceptable situations. It highlights the complexities of identifying who is palliative and lack of appropriate places of care for people who are homeless with high support needs, particularly in combination with substance misuse issues. Due to the lack of alternatives, homeless people with advanced ill health often remain in hostels. Conflict between the recovery-focused nature of many services and the realities of health and illness for often young homeless people result in a lack of person-centred care. Greater multidisciplinary working, extended in-reach into hostels from health and social services and training for all professional groups along with more access to appropriate supported accommodation are required to improve care for homeless people with advanced ill health.

  9. Competence Enhancement Program of Expressive Arts in End-of-Life Care for Health and Social Care Professionals: A Mixed-Method Evaluation.

    Science.gov (United States)

    Nan, J K M; Lau, Bobo Hi-Po; Szeto, M M L; Lam, K K F; Man, J C N; Chan, C L W

    2018-01-01

    In the recent decades, expressive arts (EXA) has been used in end-of-life care (EOLC) for facilitating the quality of life of the patients and the caregivers. However, it may not be practical for every EOLC service to dispense EXA activities solely by extensively trained art therapy specialists. There is currently a lack of brief training for nonart therapists, which may have stifled the application of the techniques in clinical settings. The current study therefore described and evaluated the effectiveness of a 2-day EXA training workshop in enhancing practice, knowledge, and self-competence among health and social care professionals working in EOLC using a mixed-method approach. The quantitative findings show significant improvement in perceived competence of providing services per holistic and person-centered EOLC objectives, nonpharmaceutical management of symptoms, and evidence-based psychosocial care as well as self-competence in death work (SCDW) after the workshop. The qualitative findings corroborated the quantitative results by suggesting that the improvement in competence could be associated with enhanced communication, meaning reconstruction, and therapeutic relationship with the clients as well as the improvement in mood, socialization, and self-esteem among the clients through the learned EXA activities. Our findings support the efficacy of a brief training of EXA activities for nonart therapists in enhancing multifaceted intervention competence. Further research on brief training will be needed to promote the use of EXA activities in the EOLC context.

  10. Cultural competence in end-of-life care: terms, definitions, and conceptual models from the British literature.

    Science.gov (United States)

    Evans, Natalie; Meñaca, Arantza; Koffman, Jonathan; Harding, Richard; Higginson, Irene J; Pool, Robert; Gysels, Marjolein

    2012-07-01

    Cultural competency is increasingly recommended in policy and practice to improve end-of-life (EoL) care for minority ethnic groups in multicultural societies. It is imperative to critically analyze this approach to understand its underlying concepts. Our aim was to appraise cultural competency approaches described in the British literature on EoL care and minority ethnic groups. This is a critical review. Articles on cultural competency were identified from a systematic review of the literature on minority ethnic groups and EoL care in the United Kingdom. Terms, definitions, and conceptual models of cultural competency approaches were identified and situated according to purpose, components, and origin. Content analysis of definitions and models was carried out to identify key components. One-hundred thirteen articles on minority ethnic groups and EoL care in the United Kingdom were identified. Over half (n=60) contained a term, definition, or model for cultural competency. In all, 17 terms, 17 definitions, and 8 models were identified. The most frequently used term was "culturally sensitive," though "cultural competence" was defined more often. Definitions contained one or more of the components: "cognitive," "implementation," or "outcome." Models were categorized for teaching or use in patient assessment. Approaches were predominantly of American origin. The variety of terms, definitions, and models underpinning cultural competency approaches demonstrates a lack of conceptual clarity, and potentially complicates implementation. Further research is needed to compare the use of cultural competency approaches in diverse cultures and settings, and to assess the impact of such approaches on patient outcomes.

  11. Shared decision-making in end-stage renal disease: a protocol for a multi-center study of a communication intervention to improve end-of-life care for dialysis patients.

    Science.gov (United States)

    Eneanya, Nwamaka D; Goff, Sarah L; Martinez, Talaya; Gutierrez, Natalie; Klingensmith, Jamie; Griffith, John L; Garvey, Casey; Kitsen, Jenny; Germain, Michael J; Marr, Lisa; Berzoff, Joan; Unruh, Mark; Cohen, Lewis M

    2015-06-12

    End-stage renal disease carries a prognosis similar to cancer yet only 20 % of end-stage renal disease patients are referred to hospice. Furthermore, conversations between dialysis team members and patients about end-of-life planning are uncommon. Lack of provider training about how to communicate prognostic data may contribute to the limited number of end-of-life care discussions that take place with this chronically ill population. In this study, we will test the Shared Decision-Making Renal Supportive Care communication intervention to systematically elicit patient and caretaker preferences for end-of-life care so that care concordant with patients' goals can be provided. This multi-center study will deploy an intervention to improve end-of-life communication for hemodialysis patients who are at high risk of death in the ensuing six months. The intervention will be carried out as a prospective cohort with a retrospective cohort serving as the comparison group. Patients will be recruited from 16 dialysis units associated with two large academic centers in Springfield, Massachusetts and Albuquerque, New Mexico. Critical input from patient advisory boards, a stakeholder panel, and initial qualitative analysis of patient and caretaker experiences with advance care planning have informed the communication intervention. Rigorous communication training for hemodialysis social workers and providers will ensure that standardized study procedures are performed at each dialysis unit. Nephrologists and social workers will communicate prognosis and provide advance care planning in face-to-face encounters with patients and families using a social work-centered algorithm. Study outcomes including frequency and timing of hospice referrals, patient and caretaker satisfaction, quality of end-of-life discussions, and quality of death will be assessed over an 18 month period. The Shared Decision-Making Renal Supportive Care Communication intervention intends to improve discussions

  12. Conceptualizing Surrogate Decision-Making at End of Life in the Intensive Care Unit using Cognitive Task Analysis

    Science.gov (United States)

    Dionne-Odom, J. Nicholas; Willis, Danny G.; Bakitas, Marie; Crandall, Beth; Grace, Pamela J.

    2014-01-01

    Background Surrogate decision-makers (SDMs) face difficult decisions at end of life (EOL) for decisionally incapacitated intensive care unit (ICU) patients. Purpose Identify and describe the underlying psychological processes of surrogate decision-making for adults at EOL in the ICU. Method Qualitative case study design using a cognitive task analysis (CTA) interviewing approach. Participants were recruited from October 2012 to June 2013 from an academic tertiary medical center’s ICU located in the rural Northeastern United States. Nineteen SDMs for patients who had died in the ICU completed in-depth semi-structured CTA interviews. Discussion The conceptual framework formulated from data analysis reveals that three underlying, iterative, psychological dimensions: gist impressions, distressing emotions, and moral intuitions impact a SDM’s judgment about the acceptability of either the patient’s medical treatments or his or her condition. Conclusion The framework offers initial insights about the underlying psychological processes of surrogate decision-making and may facilitate enhanced decision support for SDMs. PMID:25982772

  13. Communicatively Constructing the Bright and Dark Sides of Hope: Family Caregivers’ Experiences during End of Life Cancer Care

    Directory of Open Access Journals (Sweden)

    Jody Koenig Kellas

    2017-05-01

    Full Text Available (1 Background: The communication of hope is complicated, particularly for family caregivers in the context of cancer who struggle to maintain hope for themselves and their loved ones in the face of terminality. In order to understand these complexities, the current study examines the bright and dark sides of how hope is communicated across the cancer journey from the vantage point of bereaved family caregivers; (2 Methods: We analyzed interviews with bereaved family caregivers using qualitative thematic and case oriented strategies to identify patterns in the positive and negative lived experiences when communicating about hope at the end of life; (3 Results: Two overarching patterns of hope emerged. Those who experienced hope as particularized (focused on cure cited communication about false hope, performing (faking it, and avoidance. Those who transitioned from particularized to generalized hope (hope for a good death reported acceptance, the communication of hope as social support, prioritizing family, and balancing hope and honesty; (4 Conclusion: Family caregivers face myriad complexities in managing the bright and dark sides of hope. Interventions should encourage concurrent oncological and palliative care, increased perspective-taking among family members, and encourage the transition from particularized to generalized hope.

  14. Communicatively Constructing the Bright and Dark Sides of Hope: Family Caregivers’ Experiences during End of Life Cancer Care

    Science.gov (United States)

    Koenig Kellas, Jody; Castle, Katherine M.; Johnson, Alexis; Cohen, Marlene Z.

    2017-01-01

    (1) Background: The communication of hope is complicated, particularly for family caregivers in the context of cancer who struggle to maintain hope for themselves and their loved ones in the face of terminality. In order to understand these complexities, the current study examines the bright and dark sides of how hope is communicated across the cancer journey from the vantage point of bereaved family caregivers; (2) Methods: We analyzed interviews with bereaved family caregivers using qualitative thematic and case oriented strategies to identify patterns in the positive and negative lived experiences when communicating about hope at the end of life; (3) Results: Two overarching patterns of hope emerged. Those who experienced hope as particularized (focused on cure) cited communication about false hope, performing (faking it), and avoidance. Those who transitioned from particularized to generalized hope (hope for a good death) reported acceptance, the communication of hope as social support, prioritizing family, and balancing hope and honesty; (4) Conclusion: Family caregivers face myriad complexities in managing the bright and dark sides of hope. Interventions should encourage concurrent oncological and palliative care, increased perspective-taking among family members, and encourage the transition from particularized to generalized hope. PMID:28505118

  15. Evaluating complex interventions in end of life care: the MORECare statement on good practice generated by a synthesis of transparent expert consultations and systematic reviews.

    Science.gov (United States)

    Higginson, Irene J; Evans, Catherine J; Grande, Gunn; Preston, Nancy; Morgan, Myfanwy; McCrone, Paul; Lewis, Penney; Fayers, Peter; Harding, Richard; Hotopf, Matthew; Murray, Scott A; Benalia, Hamid; Gysels, Marjolein; Farquhar, Morag; Todd, Chris

    2013-04-24

    Despite being a core business of medicine, end of life care (EoLC) is neglected. It is hampered by research that is difficult to conduct with no common standards. We aimed to develop evidence-based guidance on the best methods for the design and conduct of research on EoLC to further knowledge in the field. The Methods Of Researching End of life Care (MORECare) project built on the Medical Research Council guidance on the development and evaluation of complex circumstances. We conducted systematic literature reviews, transparent expert consultations (TEC) involving consensus methods of nominal group and online voting, and stakeholder workshops to identify challenges and best practice in EoLC research, including: participation recruitment, ethics, attrition, integration of mixed methods, complex outcomes and economic evaluation. We synthesised all findings to develop a guidance statement on the best methods to research EoLC. We integrated data from three systematic reviews and five TECs with 133 online responses. We recommend research designs extending beyond randomised trials and encompassing mixed methods. Patients and families value participation in research, and consumer or patient collaboration in developing studies can resolve some ethical concerns. It is ethically desirable to offer patients and families the opportunity to participate in research. Outcome measures should be short, responsive to change and ideally used for both clinical practice and research. Attrition should be anticipated in studies and may affirm inclusion of the relevant population, but careful reporting is necessitated using a new classification. Eventual implementation requires consideration at all stages of the project. The MORECare statement provides 36 best practice solutions for research evaluating services and treatments in EoLC to improve study quality and set the standard for future research. The statement may be used alongside existing statements and provides a first step in

  16. Barriers to advance care planning at the end of life: an explanatory systematic review of implementation studies.

    Directory of Open Access Journals (Sweden)

    Susi Lund

    Full Text Available Advance Care Plans (ACPs enable patients to discuss and negotiate their preferences for the future including treatment options at the end of life. Their implementation poses significant challenges.To investigate barriers and facilitators to the implementation of ACPs, focusing on their workability and integration in clinical practice.An explanatory systematic review of qualitative implementation studies.Empirical studies that reported interventions designed to support ACP in healthcare. Web of Knowledge, Ovid MEDLINE, CINAHL, PsycINFO, British Nursing Index and PubMed databases were searched.Direct content analysis, using Normalization Process Theory, to identify and characterise relevant components of implementation processes.13 papers identified from 166 abstracts were included in the review. Key factors facilitating implementation were: specially prepared staff utilizing a structured approach to interactions around ACPs. Barriers to implementation were competing demands of other work, the emotional and interactional nature of patient-professional interactions around ACPs, problems in sharing decisions and preferences within and between healthcare organizations.This review demonstrates that doing more of the things that facilitate delivery of ACPs will not reduce the effects of those things that undermine them. Structured tools are only likely to be partially effective and the creation of a specialist cadre of ACP facilitators is unlikely to be a sustainable solution. The findings underscore both the challenge and need to find ways to routinely incorporate ACPs in clinical settings where multiple and competing demands impact on practice. Interventions most likely to meet with success are those that make elements of Advance Care Planning workable within complex and time pressured clinical workflows.

  17. Cultural and religious beliefs and values, and their impact on preferences for end-of-life care among four ethnic groups of community-dwelling older persons.

    Science.gov (United States)

    Ohr, Seok; Jeong, Sarah; Saul, Peter

    2017-06-01

    To explore specific cultural and religious beliefs and values concerning death and dying, truth telling, and advance care planning, and the preferences for end-of-life care among older persons from culturally and linguistically diverse backgrounds. Whilst literature indicates that culture impacts on end-of-life decision-making significantly, there is limited evidence on the topic. A cross-sectional survey. A total of 171 community older persons who make regular visits to 17 day care centres expressed in a questionnaire their; (1) beliefs about death and dying, truth telling, and advance care planning, and (2) preferences for end-of-life care. More than 92% of respondents believed that dying is a normal part of life, and more than 70% felt comfortable talking about death. Whilst respondents accepted dying as a normal part of life, 64% of Eastern Europeans and 53% of Asia/Pacific groups believed that death should be avoided at all costs. People from the Asia/Pacific group reported the most consensual view against all of the life-prolonging measures. Cultural and religious beliefs and values may have an impact on preferences for treatment at end-of-life. The study offers nurses empirical data to help shape conversations about end-of-life care, and thus to enhance their commitment to help people 'die well'. Information acquisition to extend understanding of each individual before proceeding with documentation of advance care planning is essential and should include retrieval of individuals' cultural and religious beliefs and values, and preferences for care. An institutional system and/or protocol that promote conversations about these among nurses and other healthcare professionals are warranted. © 2016 John Wiley & Sons Ltd.

  18. Mixed methods research in the development and evaluation of complex interventions in palliative and end-of-life care: report on the MORECare consensus exercise.

    Science.gov (United States)

    Farquhar, Morag; Preston, Nancy; Evans, Catherine J; Grande, Gunn; Short, Vicky; Benalia, Hamid; Higginson, Irene J; Todd, Chris

    2013-12-01

    Complex interventions are common in palliative and end-of-life care. Mixed methods approaches sit well within the multiphase model of complex intervention development and evaluation. Generic mixed methods guidance is useful but additional challenges in the research design and operationalization within palliative and end-of-life care may have an impact on the use of mixed methods. The objective of the study was to develop guidance on the best methods for combining quantitative and qualitative methods for health and social care intervention development and evaluation in palliative and end-of-life care. A one-day workshop was held where experts participated in facilitated groups using Transparent Expert Consultation to generate items for potential recommendations. Agreement and consensus were then sought on nine draft recommendations (DRs) in a follow-up exercise. There was at least moderate agreement with most of the DRs, although consensus was low. Strongest agreement was with DR1 (usefulness of mixed methods to palliative and end-of-life care) and DR5 (importance of attention to respondent burden), and least agreement was with DR2 (use of theoretical perspectives) and DR6 (therapeutic effects of research interviews). Narrative comments enabled recommendation refinement. Two fully endorsed, five partially endorsed, and two refined DRs emerged. The relationship of these nine to six key challenges of palliative and end-of-life care research was analyzed. There is a need for further discussion of these recommendations and their contribution to methodology. The recommendations should be considered when designing and operationalizing mixed methods studies of complex interventions in palliative care, and because they may have wider relevance, should be considered for other applications.

  19. Consensus Statement of the International Summit on Intellectual Disability and Dementia Related to End-of-Life Care in Advanced Dementia

    Science.gov (United States)

    McCallion, Philip; Hogan, Mary; Santos, Flavia H.; McCarron, Mary; Service, Kathryn; Stemp, Sandy; Keller, Seth; Fortea, Juan; Bishop, Kathleen; Watchman, Karen; Janicki, Matthew P.

    2017-01-01

    Background: Adults with intellectual disability are affected by dementia at equivalent and elevated rates, many surviving into advanced age. End of life care and support considerations come into play among these individuals when most are in the advanced stage of dementia. Methods: A preliminary report summarizing available literature and making…

  20. End-of-Life Care and Circumstances of Death in Patients Dying As a Result of Cancer in Belgium and the Netherlands: A Retrospective Comparative Study

    NARCIS (Netherlands)

    Meeussen, K.; van den Block, L.; Echteld, M.A.; Boffin, N.; Bilsen, J.; van Casteren, V.; Abarshi-Fatiregun, E.A.B.; Donker, G.; Onwuteaka-Philipsen, B.D.; Deliens, L.

    2011-01-01

    Purpose: To examine and compare end-of-life care in patients with cancer dying in Belgium and the Netherlands. Patients and Methods: A mortality follow-back study was undertaken in 2008 via representative nationwide sentinel networks of general practitioners (GPs) in Belgium and the Netherlands. By

  1. End-of-life care and circumstances of death in patients dying as a result of cancer in Belgium and the Netherlands: a retrospective comparative study.

    NARCIS (Netherlands)

    Meeussen, K.; Block, L. van den; Echteld, M.A.; Boffin, N.; Bilsen, J.; Casteren, V. van; Abarshi, E.; Donker, G.; Onwuteaka-Philipsen, B.; Deliens, L.

    2011-01-01

    Purpose: To examine and compare end-of-life care in patients with cancer dying in Belgium and the Netherlands. Patients and methods: A mortality follow-back study was undertaken in 2008 via representative nationwide sentinel networks of general practitioners (GPs) in Belgium and the Netherlands. By

  2. Making decisions at the end of life when caring for a person with dementia: a literature review to explore the potential use of heuristics in difficult decision-making.

    Science.gov (United States)

    Mathew, R; Davies, N; Manthorpe, J; Iliffe, S

    2016-07-19

    Decision-making, when providing care and treatment for a person with dementia at the end of life, can be complex and challenging. There is a lack of guidance available to support practitioners and family carers, and even those experienced in end of life dementia care report a lack of confidence in decision-making. It is thought that the use of heuristics (rules of thumb) may aid decision-making. The aim of this study is to identify whether heuristics are used in end of life dementia care, and if so, to identify the context in which they are being used. A narrative literature review was conducted taking a systematic approach to the search strategy, using the Centre for Reviews and Dissemination guidelines. Rapid appraisal methodology was used in order to source specific and relevant literature regarding the use of heuristics in end of life dementia care. A search using terms related to dementia, palliative care and decision-making was conducted across 4 English language electronic databases (MEDLINE, EMBASE, PsycINFO and CINAHL) in 2015. The search identified 12 papers that contained an algorithm, guideline, decision tool or set of principles that we considered compatible with heuristic decision-making. The papers addressed swallowing and feeding difficulties, the treatment of pneumonia, management of pain and agitation, rationalising medication, ending life-sustaining treatment, and ensuring a good death. The use of heuristics in palliative or end of life dementia care is not described in the research literature. However, this review identified important decision-making principles, which are largely a reflection of expert opinion. These principles may have the potential to be developed into simple heuristics that could be used in practice. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/

  3. Quality of Living and Dying: Pediatric Palliative Care and End-of-Life Decisions in the Netherlands

    NARCIS (Netherlands)

    Brouwer, Marije; Maeckelberghe, Els; de Weerd, Willemien; Verhagen, Eduard

    2018-01-01

    The Netherlands has always been (and continues to be) at the forefront in developing rules and jurisdiction regarding euthanasia and end-of-life decisions. In 2002, this resulted in the Euthanasia Act, which allows euthanasia for patients twelve years of age and older. Following that, in 2005, the

  4. WA42 Proving its worth - changing public policy for palliative care, end of life care and bereavement through advocacy and communications.

    Science.gov (United States)

    Edghill, Angela; Donohoe, Miriam

    2015-04-01

    The 2015 palliative care budget is €72 million (Euros) but up to €1.3 billion spent on end of life care annually - much of this larger figure unplanned and uncoordinated. Geographic and other inequities evident in palliative care provision. Build support for the development and implementation of a National Strategy on Palliative Care, End of Life and Bereavement. Multi-layered approach to raising awareness and building consensus: Targeting the correct audience who can make change happen Presenting robust evidence including costs justifying reform and investment Demonstrating that issues affect a significant number of people Sharing experience and knowledge Knowing their policy priorities Staying resilient - advancing and introducing new angles to argument Engaging directly as advocates within the political system at all political levels - developing relationships with politicians Identifying advocates in the public service to promote policy change Using a variety of new and existing projects and programmes Encouraging patients and families to be self-advocates - using a novel project for discussing and recording future care preferences Supporting healthcare professionals to become effective advocates for patients Creating alliances to lobby for policy development Using media opportunities to sell the message The recognition of the importance of a strategic approach to palliative and end of life care acknowledged in Parliamentary Committee Report affords an opportunity to develop further policy and practice. This a long - term exercise, dependent on supporting the implementation plan, building momentum and promoting a public dialogue on sensitive issues around dying, death and bereavement. © 2015, Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

  5. End-of-Life Decision Making in Palliative Care and Recommendations of the Council of Europe: Qualitative Secondary Analysis of Interviews and Observation Field Notes.

    Science.gov (United States)

    Martins Pereira, Sandra; Fradique, Emília; Hernández-Marrero, Pablo

    2018-05-01

    End-of-life decisions (ELDs) are embedded in clinical, sociocultural, political, economic, and ethical concerns. In 2014, the Council of Europe (CoE) through its Committee on Bioethics launched the "Guide on the decision-making process regarding medical treatment in end-of-life situations," aiming at improving decision-making processes and empowering professionals in making ELDs. To analyze if end-of-life decision making in palliative care (PC) is consistent with this Guide and to identify if disputed/controversial issues are part of current ELDs. Qualitative secondary analysis. Four qualitative datasets, including 44 interviews and 9 team observation field notes from previous studies with PC teams/professionals in Portugal. An analysis grid based on the abovementioned guide was created considering three dimensions: ethical and legal frameworks, decision-making process, and disputed/controversial issues. The majority of the professionals considered the ethical principle of autonomy paramount in end-of-life decision making. Justice and beneficence/nonmaleficence were also valued. Although not mentioned in the Guide, the professionals also considered other ethical principles when making ELDs, namely, responsibility, integrity, and dignity. Most of the interviewees and field notes referred to the collective interprofessional dimension of the decision-making process. Palliative sedation and the wish to hasten death were the most mentioned disputed/controversial issues. The nature, limitations, and benefits of qualitative secondary analysis are discussed. End-of-life decision-making processes made by Portuguese PC teams seem to be consistent with the guidelines of the CoE. Further research is needed about disputed/controversial issues and the actual use, effectiveness, and impact of ethical guidelines for end-of-life decision making on professionals' empowerment and for all parties involved.

  6. Music Therapy and Spiritual Care in End-of-Life: A Qualitative Inquiry into Ethics and Training Issues Identified by Chaplains and Music Therapists.

    Science.gov (United States)

    Masko, Meganne K

    2016-01-01

    Music therapists are increasingly employed by hospices. As such, they are often called upon to provide additional spiritual care to patients receiving end-of-life care. However, researchers have not yet examined the appropriateness of music therapists providing spiritual care as part of the hospice team, or ethics and training issues related to music therapist-led spiritual care. The purpose of this study was to explore the thoughts and attitudes of hospice chaplains and music therapists (MTs) about ethics and training issues related to music therapists providing spiritual care as part of the hospice interdisciplinary team. The study used semi-structured interviews with a purposive sample of music therapists and chaplains specializing in hospice care as part of a larger exploratory mixed methods study. Each interview was recorded, transcribed, and analyzed using a two-step process including both a modified phenomenological inductive approach and thematic analysis. Participants discussed ethics and training issues related to the provision of music therapist-led spiritual care as part of the hospice team. These issues included scope of practice, cultural competence and maintaining personal boundaries, and spiritual care training topics such as educational content and educational methods. While it was clear that both chaplains and music therapists felt it was appropriate for music therapists to provide spiritual care as part of the hospice team, there is a need for formal and informal spiritual care training for music therapists doing this type of work. Training should potentially include information about comparative religions, cultural competence, scope of practice, and maintaining personal boundaries. © the American Music Therapy Association 2016. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

  7. Experiences and Preferences for End-of-Life Care for Young Adults with Cancer and Their Informal Carers: A Narrative Synthesis.

    Science.gov (United States)

    Ngwenya, Nothando; Kenten, Charlotte; Jones, Louise; Gibson, Faith; Pearce, Susie; Flatley, Mary; Hough, Rachael; Stirling, L Caroline; Taylor, Rachel M; Wong, Geoff; Whelan, Jeremy

    2017-06-01

    To review the qualitative literature on experiences of and preferences for end-of-life care of people with cancer aged 16-40 years (young adults) and their informal carers. A systematic review using narrative synthesis of qualitative studies using the 2006 UK Economic and Social Research Council research methods program guidance. Seven electronic bibliographic databases, two clinical trials databases, and three relevant theses databases were searched from January 2004 to October 2015. Eighteen articles were included from twelve countries. The selected studies included at least 5% of their patient sample within the age range 16-40 years. The studies were heterogeneous in their aims, focus, and sample, but described different aspects of end-of-life care for people with cancer. Positive experiences included facilitating adaptive coping and receiving palliative home care, while negative experiences were loss of "self" and nonfacilitative services and environment. Preferences included a family-centered approach to care, honest conversations about end of life, and facilitating normality. There is little evidence focused on the end-of-life needs of young adults. Analysis of reports including some young adults does not explore experience or preferences by age; therefore, it is difficult to identify age-specific issues clearly. From this review, we suggest that supportive interventions and education are needed to facilitate open and honest communication at an appropriate level with young people. Future research should focus on age-specific evidence about the end-of-life experiences and preferences for young adults with cancer and their informal carers.

  8. 'Ingredients' of a supportive web of caring relationships at the end of life: findings from a community research project in Austria.

    Science.gov (United States)

    Wegleitner, Klaus; Schuchter, Patrick; Prieth, Sonja

    2018-04-27

    In accordance with the pluralisation of life plans in late modernity, the societal organisation of care at the end of life is diverse. Although the public discourse in western societies is dominated by questions about optimising specialised palliative care services, public health approaches, which take into account the social determinants and inequalities in end-of-life care, have gained in importance over the last decade. Conceptual aspects, dimensions of impact and benefit for the dying and their communities are well discussed in the public health end-of-life care research literature. Our research focuses on the preconditions of a supportive caring web in order to understand how communities can build on their social capital to deal with existential uncertainty. As part of a large-scale community research project, we carried out focus groups and interviews with community members. Through dispositive analysis, we generated a set of care-web 'ingredients', which constitute and foster a caring community. These 'ingredients' need to be cultivated through an ongoing process of co-creation. This requires: (i) a focus on relationships and social systems; (ii) the creation of reflective spaces; and (iii) the strengthening of social capital, and d) the addressing of inequalities in care. © 2018 The Authors. Sociology of Health & Illness published by John Wiley & Sons Ltd on behalf of Foundation for SHIL.

  9. Training and career development in palliative care and end-of-life research: opportunities for development in the U.S.

    Science.gov (United States)

    Aziz, Noreen M; Grady, Patricia A; Curtis, J Randall

    2013-12-01

    There has been a dramatic increase in attention to the field of palliative care and end-of-life (PCEOL) research over the past 20 years. This increase is particularly notable in the development of palliative care clinical and educational programs. However, there remain important shortcomings in the evidence base to ensure access to and delivery of effective palliative care for patients with life-limiting illness and their families. Development of this evidence base will require that we train the next generation of researchers to focus on issues in PCEOL. The purpose of this article was to explore the current status of the recruitment, training, and retention of future investigators in PCEOL research in the U.S. and propose recommendations to move us forward. Some key contextual issues for developing and supporting this research workforce are articulated, along with timely and important research areas that will need to be addressed during research training and career development. We provide targeted key recommendations to facilitate the nurturing and support of the future research workforce that is needed to ensure the development and implementation of the science necessary for providing high-quality, evidence-based palliative care to all who need and desire it. Copyright © 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

  10. End-of-life care communications and shared decision-making in Norwegian nursing homes--experiences and perspectives of patients and relatives.

    Science.gov (United States)

    Gjerberg, Elisabeth; Lillemoen, Lillian; Førde, Reidun; Pedersen, Reidar

    2015-08-19

    Involving nursing home patients and their relatives in end-of-life care conversations and treatment decisions has recently gained increased importance in several Western countries. However, there is little knowledge about how the patients themselves and their next-of-kin look upon involvement in end-of-life care decisions. The purpose of this paper is to explore nursing home patients' and next-of-kin's experiences with- and perspectives on end-of-life care conversations, information and shared decision-making. The study has a qualitative and explorative design, based on a combination of individual interviews with 35 patients living in six nursing homes and seven focus group interviews with 33 relatives. The data was analysed applying a "bricolage" approach". Participation was based on informed consent, and the study was approved by the Regional Committees for Medical and Health Research Ethics. Few patients and relatives had participated in conversations about end-of-life care. Most relatives wanted such conversations, while the patients' opinions varied. With some exceptions, patients and relatives wanted to be informed about the patient's health condition. The majority wanted to be involved in the decision-making process, but leave the final decisions to the health professionals. Among the patients, the opinion varied; some patients wanted to leave the decisions more or less completely to the nursing home staff. Conversations about end-of-life care issues are emotionally challenging, and very few patients had discussed these questions with their family. The relatives' opinions of the patient's preferences were mainly based on assumptions; they had seldom talked about this explicitly. Both patients and relatives wanted the staff to raise these questions. Nursing home staff should initiate conversations about preferences for end-of-life care, assisting patients and relatives in talking about these issues, while at the same time being sensitive to the diversity in

  11. The Impact of Faith Beliefs on Perceptions of End-of-Life Care and Decision Making among African American Church Members.

    Science.gov (United States)

    Johnson, Jerry; Hayden, Tara; True, Jennifer; Simkin, Daren; Colbert, Louis; Thompson, Beverly; Stewart, Denise; Martin, Latoya

    2016-02-01

    African Americans underuse palliative care and hospice services because of a combination of factors including faith beliefs. As the spiritual family for many African Americans, the church presents an opportunity to improve communication about palliative care and hospice and end-of-life (EOL) decision making. We conducted a focus group study to understand the cultural and spiritual perspectives that influence decisions about palliative care and hospice among African American church members who visit and support persons with life-limiting illnesses. Our specific aims were to elicit their perceptions, beliefs, and attitudes about: (1) the relation between faith beliefs and EOL care; (2) emotional and family influences on EOL decision making; (3) palliative care and hospice resources; and (4) opportunities to improve communication among lay persons and health professionals and within families. Seven focus groups using purposeful sampling. We partnered with two African American churches. Of 51 persons, 27 were deacons or deaconesses, 17 were members of health or bereavement ministries, and 7 were other members of the congregations. We found that faith beliefs of African Americans can support discussions about palliative care and hospice. Participants perceived that many of their congregants harbor beliefs, perceptions, and feelings about death and dying that were often not communicated to family members or to health providers. Among African Americans, faith beliefs, emotional issues, family dynamics, and insufficient knowledge of palliative care and hospice are intertwined and influence decision making about palliative care and hospice. Our findings confirm the influence of faith beliefs of African Americans on decisions about palliative care and hospice and demonstrate the opportunity to improve communication about palliative care and hospice and EOL through collaborations with the African American church.

  12. A metasynthesis study of family caregivers' transition experiences caring for community-dwelling persons with advanced cancer at the end of life.

    Science.gov (United States)

    Duggleby, Wendy; Tycholiz, Jamie; Holtslander, Lorraine; Hudson, Peter; Nekolaichuk, Cheryl; Mirhosseini, Mehrnoush; Parmar, Jasneet; Chambers, Thane; Alook, Angele; Swindle, Jennifer

    2017-07-01

    Family caregivers (broadly defined as family and friends) experience multiple concurrent transitions when caring for a person with advanced cancer. To (a) explore the transition experience of family caregivers caring for persons with advanced cancer living in the community, (b) describe potential triggers for transitions, (c) identify what influences this experience, and (d) develop a conceptual framework of their transition experience. Sandelowski and Barroso's methodology for synthesizing qualitative research included (a) a comprehensive search of empirical literature, (b) quality appraisal of qualitative studies, (c) classification of studies, and (d) synthesis of the findings. Literature was sourced from six electronic data bases. Inclusion criteria were as follows: (a) published qualitative studies (and mixed-method designs) of the caregiving experience of family caregivers of community-living persons with advanced cancer at the end of life, (b) participants (caregivers and care recipients) of 18 years of age and above, (c) studies published in English in any country, and (d) studies published between 2004 and 2014. A total of 72 studies were included in the metasynthesis. Family caregivers experience a "life transition" whereby their lives are permanently altered. The participants described the process of redefining normal which consisted of coming to terms with their situation and connecting with others. Outcomes of these processes were as follows: (a) maintaining a sense of personhood, (b) reframing hope, (c) maintaining self-efficacy, (d) finding meaning, and (e) preparing for the death of their care recipient. The findings provide a framework to guide the development of supportive programs and future research.

  13. Variations in the quality and costs of end-of-life care, preferences and palliative outcomes for cancer patients by place of death: the QUALYCARE study

    Directory of Open Access Journals (Sweden)

    Koffman Jonathan

    2010-08-01

    Full Text Available Abstract Background Emerging trends and new policies suggest that more cancer patients might die at home in the future. However, not all have equal chances of achieving this. Furthermore, there is lack of evidence to support that those who die at home experience better care and a better death than those who die as inpatients. The QUALYCARE study aims to examine variations in the quality and costs of end-of-life care, preferences and palliative outcomes associated with dying at home or in an institution for cancer patients. Methods/Design Mortality followback survey (with a nested case-control study of home vs. hospital deaths conducted with bereaved relatives of cancer patients in four Primary Care Trusts in London. Potential participants are identified from death registrations and approached by the Office for National Statistics in complete confidence. Data are collected via a postal questionnaire to identify the informal and formal care received in the three months before death and the associated costs, relatives' satisfaction with care, and palliative outcomes for the patients and their relatives. A well-established questionnaire to measure relatives' views on the care integrates four brief and robust tools - the Client Service Receipt Inventory, the Palliative Outcome Scale, the EQ-5 D and the Texas Revised Inventory of Grief. Further questions assess patients and relatives' preferences for place of death. The survey aims to include 500 bereaved relatives (140 who experienced a home death, 205 a hospital death, 115 a hospice death and 40 a nursing home death. Bivariate and multivariate analyses will explore differences in place of death and place of end-of-life care, in preferences for place of death, patients' palliative outcomes and relatives' bereavement outcomes, in relation to place of death. Factors influencing death at home and the costs of end-of-life care by place of death will be identified. Discussion Collecting data on end-of-life

  14. Opening end-of-life discussions: how to introduce Voicing My CHOiCES™, an advance care planning guide for adolescents and young adults.

    Science.gov (United States)

    Zadeh, Sima; Pao, Maryland; Wiener, Lori

    2015-06-01

    Each year, more than 11,000 adolescents and young adults (AYAs), aged 15-34, die from cancer and other life-threatening conditions. In order to facilitate the transition from curative to end-of-life (EoL) care, it is recommended that EoL discussions be routine, begin close to the time of diagnosis, and continue throughout the illness trajectory. However, due largely to discomfort with the topic of EoL and how to approach the conversation, healthcare providers have largely avoided these discussions. We conducted a two-phase study through the National Cancer Institute with AYAs living with cancer or pediatric HIV to assess AYA interest in EoL planning and to determine in which aspects of EoL planning AYAs wanted to participate. These results provided insight regarding what EoL concepts were important to AYAs, as well as preferences in terms of content, design, format, and style. The findings from this research led to the development of an age-appropriate advance care planning guide, Voicing My CHOiCES™. Voicing My CHOiCES™: An Advanced Care Planning Guide for AYA became available in November 2012. This manuscript provides guidelines on how to introduce and utilize an advance care planning guide for AYAs and discusses potential barriers. Successful use of Voicing My CHOiCES™ will depend on the comfort and skills of the healthcare provider. The present paper is intended to introduce the guide to providers who may utilize it as a resource in their practice, including physicians, nurses, social workers, chaplains, psychiatrists, and psychologists. We suggest guidelines on how to: incorporate EoL planning into the practice setting, identify timepoints at which a patient's goals of care are discussed, and address how to empower the patient and incorporate the family in EoL planning. Recommendations for introducing Voicing My CHOiCES™ and on how to work through each section alongside the patient are provided.

  15. Canada's Compassionate Care Benefit: is it an adequate public health response to addressing the issue of caregiver burden in end-of-life care?

    Science.gov (United States)

    Williams, Allison M; Eby, Jeanette A; Crooks, Valorie A; Stajduhar, Kelli; Giesbrecht, Melissa; Vuksan, Mirjana; Cohen, S Robin; Brazil, Kevin; Allan, Diane

    2011-05-18

    An increasingly significant public health issue in Canada, and elsewhere throughout the developed world, pertains to the provision of adequate palliative/end-of-life (P/EOL) care. Informal caregivers who take on the responsibility of providing P/EOL care often experience negative physical, mental, emotional, social and economic consequences. In this article, we specifically examine how Canada's Compassionate Care Benefit (CCB)--a contributory benefits social program aimed at informal P/EOL caregivers--operates as a public health response in sustaining informal caregivers providing P/EOL care, and whether or not it adequately addresses known aspects of caregiver burden that are addressed within the population health promotion (PHP) model. As part of a national evaluation of Canada's Compassionate Care Benefit, 57 telephone interviews were conducted with Canadian informal P/EOL caregivers in 5 different provinces, pertaining to the strengths and weaknesses of the CCB and the general caregiving experience. Interview data was coded with Nvivo software and emerging themes were identified by the research team, with such findings published elsewhere. The purpose of the present analysis was identified after comparing the findings to the literature specific to caregiver burden and public health, after which data was analyzed using the PHP model as a guiding framework. Informal caregivers spoke to several of the determinants of health outlined in the PHP model that are implicated in their burden experience: gender, income and social status, working conditions, health and social services, social support network, and personal health practises and coping strategies. They recognized the need for improving the CCB to better address these determinants. This study, from the perspective of family caregivers, demonstrates that the CCB is not living up to its full potential in sustaining informal P/EOL caregivers. Effort is required to transform the CCB so that it may fulfill the

  16. The Context of Religious and Spiritual Care at the End of Life in Long-term Care Facilities.

    Science.gov (United States)

    Hamilton, V Lee; Daaleman, Timothy P; Williams, Christianna S; Zimmerman, Sheryl

    2009-01-01

    Despite the increasing numbers of Americans who die in nursing homes (NHs) and residential care/assisted living (RC/AL) facilities, and the importance of religious and spiritual needs as one approaches death, little is known about how these needs are met for dying individuals in long-term care (LTC) institutional settings. This study compared receipt of religious and spiritual help in four types of LTC settings: NHs, smaller (facilities, traditional RC/AL facilities, and new-model RC/AL facilities. Data were also available for religious affiliation of the facilities, size, and provision of religious and hospice services. Controlling for such factors, the importance of religion/spirituality to the decedent was the strongest predictor of the decedent's receipt of spiritual help. In addition, new-model RC/AL facilities were significantly more likely to provide help for religious and spiritual needs of decedent residents than other RC/AL types, but did not differ significantly from NHs.

  17. Factors Associated with Participation, Active Refusals and Reasons for Not Taking Part in a Mortality Followback Survey Evaluating End-of-Life Care.

    Directory of Open Access Journals (Sweden)

    Natalia Calanzani

    Full Text Available Examination of factors independently associated with participation in mortality followback surveys is rare, even though these surveys are frequently used to evaluate end-of-life care. We aimed to identify factors associated with 1 participation versus non-participation and 2 provision of an active refusal versus a silent refusal; and systematically examine reasons for refusal in a population-based mortality followback survey.Postal survey about the end-of-life care received by 1516 people who died from cancer (aged ≥18, identified through death registrations in London, England (response rate 39.3%. The informant of death (a relative in 95.3% of cases was contacted 4-10 months after the patient died. We used multivariate logistic regression to identify factors associated with participation/active refusals and content analysis to examine refusal reasons provided by 205 nonparticipants.The odds of partaking were higher for patients aged 90+ (AOR 3.48, 95%CI: 1.52-8.00, ref: 20-49yrs and female informants (AOR 1.70, 95%CI: 1.33-2.16. Odds were lower for hospital deaths (AOR 0.62, 95%CI: 0.46-0.84, ref: home and proxies other than spouses/partners (AORs 0.28 to 0.57. Proxies of patients born overseas were less likely to provide an active refusal (AOR 0.49; 95% CI: 0.32-0.77. Refusal reasons were often multidimensional, most commonly study-related (36.0%, proxy-related and grief-related (25.1% each. One limitation of this analysis is the large number of nonparticipants who did not provide reasons for refusal (715/920.Our survey better reached proxies of older patients while those dying in hospitals were underrepresented. Proxy characteristics played a role, with higher participation from women and spouses/partners. More information is needed about the care received by underrepresented groups. Study design improvements may guide future questionnaire development and help develop strategies to increase response rates.

  18. Factors Associated with Participation, Active Refusals and Reasons for Not Taking Part in a Mortality Followback Survey Evaluating End-of-Life Care

    Science.gov (United States)

    Calanzani, Natalia; Higginson, Irene J; Koffman, Jonathan; Gomes, Barbara

    2016-01-01

    Background Examination of factors independently associated with participation in mortality followback surveys is rare, even though these surveys are frequently used to evaluate end-of-life care. We aimed to identify factors associated with 1) participation versus non-participation and 2) provision of an active refusal versus a silent refusal; and systematically examine reasons for refusal in a population-based mortality followback survey. Methods Postal survey about the end-of-life care received by 1516 people who died from cancer (aged ≥18), identified through death registrations in London, England (response rate 39.3%). The informant of death (a relative in 95.3% of cases) was contacted 4–10 months after the patient died. We used multivariate logistic regression to identify factors associated with participation/active refusals and content analysis to examine refusal reasons provided by 205 nonparticipants. Findings The odds of partaking were higher for patients aged 90+ (AOR 3.48, 95%CI: 1.52–8.00, ref: 20–49yrs) and female informants (AOR 1.70, 95%CI: 1.33–2.16). Odds were lower for hospital deaths (AOR 0.62, 95%CI: 0.46–0.84, ref: home) and proxies other than spouses/partners (AORs 0.28 to 0.57). Proxies of patients born overseas were less likely to provide an active refusal (AOR 0.49; 95% CI: 0.32–0.77). Refusal reasons were often multidimensional, most commonly study-related (36.0%), proxy-related and grief-related (25.1% each). One limitation of this analysis is the large number of nonparticipants who did not provide reasons for refusal (715/920). Conclusions Our survey better reached proxies of older patients while those dying in hospitals were underrepresented. Proxy characteristics played a role, with higher participation from women and spouses/partners. More information is needed about the care received by underrepresented groups. Study design improvements may guide future questionnaire development and help develop strategies to increase

  19. Challenges in end-of-life communication.

    Science.gov (United States)

    Galushko, Maren; Romotzky, Vanessa; Voltz, Raymond

    2012-09-01

    The purpose of this review is to give an overview of challenges that have been addressed in recent research in end-of-life communication. Diversity of difficulties that may occur in communication about end-of-life issues has been showed. The emotional quality of this communication requires special skills from professionals involved. Studies showed that physicians and medical students are often overstrained and avoid end-of-life discussions. Health professionals and patients are often ambivalent about end-of-life discussions. Nevertheless, professionals are expected to initiate these in an honest, needs-oriented way. Patient preferences are difficult to infer and have to be assessed explicitly and regularly. Studies showed that the emotional impact of end-of-life discussions can lead to a high burden or avoidance of professionals. Interdisciplinary, multi-professional work can support health professionals in end-of-life care but often structural barriers obstruct possible benefits. Health professionals need to initiate end-of-life communication in a sensitive way. Specific demands for health professionals in end-of-life communication are to differentiate own emotions and life events from those of patients and to deal with both adequately. Moreover, structural aspects can lead to difficulties between different specialties, professions and sectors, which can have a negative impact on adequate care for patient and relatives. Special efforts for improvement are needed.

  20. Development and Pilot Evaluation of a Novel Dignity-Conserving End-of-Life (EoL) Care Model for Nursing Homes in Chinese Societies.

    Science.gov (United States)

    Ho, Andy H Y; Dai, Annie A N; Lam, Shu-Hang; Wong, Sandy W P; Tsui, Amy L M; Tang, Jervis C S; Lou, Vivian W Q

    2016-06-01

    The provision of end-of-life (EoL) care in long-term-care settings remains largely underdeveloped in most Chinese societies, and nursing home residents often fail to obtain good care as they approach death. This paper systematically describes the development and implementation mechanisms of a novel Dignity-Conserving EoL Care model that has been successfully adopted by three nursing homes in Hong Kong and presents preliminary evidence of its effectiveness on enhancing dignity and quality of life (QoL) of terminally ill residents. Nine terminally ill nursing home residents completed the McGill Quality of Life Questionnaire and the Nursing Facilities Quality of Life Questionnaire at baseline and 6 months post-EoL program enrollment. Wilcoxon signed rank test was used to detect significance changes in each QoL domains across time. Although significant deterioration was recorded for physical QoL, significant improvement was observed for social QoL. Moreover, a clear trend toward significant improvements was identified for the QoL domains of individuality and relationships. A holistic and compassionate caring environment, together with the core principles of family-centered care, interagency and interdisciplinary teamwork, as well as cultural-specific psycho-socio-spiritual support, are all essential elements for optimizing QoL and promoting death with dignity for nursing home residents facing morality. This study provides a useful framework to facilitate the future development of EoL care in long-term-care settings in the Chinese context. © The Author 2015. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

  1. End of life issues in a palliative care framework for a critically ill adult African American with cystic fibrosis: a case study.

    Science.gov (United States)

    McNeal, Gloria J

    2002-01-01

    The purpose of this investigation, using case study methodology, was to explore the end of life issues and to give meaning to the biopsychosocial experiences of the study participant, an adult African American female patient diagnosed with Cystic Fibrosis. Two theoretical frameworks were used to guide the investigation of the study: Kubler-Ross Model of the Stages of Dying and the Conceptual Framework for Palliative Care Practice. Data analysis included review of medical records and patient journals, interviews, observations and clinical assessment. The findings indicated that end of life issues can be articulated within the context of a palliative care framework and that the biopsychosocial experiences of the dying person acquire meaning when situated within life history, ethical values and metaphysical belief systems.

  2. To be truly alive: motivation among prison inmate hospice volunteers and the transformative process of end-of-life peer care service.

    Science.gov (United States)

    Cloyes, Kristin G; Rosenkranz, Susan J; Wold, Dawn; Berry, Patricia H; Supiano, Katherine P

    2014-11-01

    Some US prisons are meeting the growing need for end-of-life care through inmate volunteer programs, yet knowledge of the motivations of inmate caregivers is underdeveloped. This study explored the motivations of inmate hospice volunteers from across Louisiana State (n = 75) through an open-ended survey, a grounded theory approach to analysis, and comparison of responses by experience level and gender. Participants expressed complex motivations; Inter-related themes on personal growth, social responsibility and ethical service to vulnerable peers suggested that inmate caregivers experience an underlying process of personal and social transformation, from hospice as a source of positive self-identity to peer-caregiving as a foundation for community. Better understanding of inmate caregiver motivations and processes will help prisons devise effective and sustainable end of life peer-care programs. © The Author(s) 2013.

  3. Physician-related barriers to communication and patient- and family-centred decision-making towards the end of life in intensive care: a systematic review.

    Science.gov (United States)

    Visser, Mieke; Deliens, Luc; Houttekier, Dirk

    2014-11-18

    Although many terminally ill people are admitted to an intensive care unit (ICU) at the end of life, their care is often inadequate because of poor communication by physicians and lack of patient- and family-centred care. The aim of this systematic literature review was to describe physician-related barriers to adequate communication within the team and with patients and families, as well as barriers to patient- and family-centred decision-making, towards the end of life in the ICU. We base our discussion and evaluation on the quality indicators for end-of-life care in the ICU developed by the Robert Wood Johnson Foundation Critical Care End-of-Life Peer Workgroup. Four electronic databases (MEDLINE, Embase, CINAHL and PsycINFO) were searched, using controlled vocabulary and free text words, for potentially relevant records published between 2003 and 2013 in English or Dutch. Studies were included if the authors reported on physician-related and physician-reported barriers to adequate communication and decision-making. Barriers were categorized as being related to physicians' knowledge, physicians' attitudes or physicians' practice. Study quality was assessed using design-specific tools. Evidence for barriers was graded according to the quantity and quality of studies in which the barriers were reported. Of 2,191 potentially relevant records, 36 studies were withheld for data synthesis. We determined 90 barriers, of which 46 were related to physicians' attitudes, 24 to physicians' knowledge and 20 to physicians' practice. Stronger evidence was found for physicians' lack of communication training and skills, their attitudes towards death in the ICU, their focus on clinical parameters and their lack of confidence in their own judgment of their patient's true condition. We conclude that many physician-related barriers hinder adequate communication and shared decision-making in ICUs. Better physician education and palliative care guidelines are needed to enhance

  4. Development and initial validation of the Parental PELICAN Questionnaire (PaPEQu)--an instrument to assess parental experiences and needs during their child's end-of-life care.

    Science.gov (United States)

    Zimmermann, Karin; Cignacco, Eva; Eskola, Katri; Engberg, Sandra; Ramelet, Anne-Sylvie; Von der Weid, Nicolas; Bergstraesser, Eva

    2015-12-01

    To develop and test the Parental PELICAN Questionnaire, an instrument to retrospectively assess parental experiences and needs during their child's end-of-life care. To offer appropriate care for dying children, healthcare professionals need to understand the illness experience from the family perspective. A questionnaire specific to the end-of-life experiences and needs of parents losing a child is needed to evaluate the perceived quality of paediatric end-of-life care. This is an instrument development study applying mixed methods based on recommendations for questionnaire design and validation. The Parental PELICAN Questionnaire was developed in four phases between August 2012-March 2014: phase 1: item generation; phase 2: validity testing; phase 3: translation; phase 4: pilot testing. Psychometric properties were assessed after applying the Parental PELICAN Questionnaire in a sample of 224 bereaved parents in April 2014. Validity testing covered the evidence based on tests of content, internal structure and relations to other variables. The Parental PELICAN Questionnaire consists of approximately 90 items in four slightly different versions accounting for particularities of the four diagnostic groups. The questionnaire's items were structured according to six quality domains described in the literature. Evidence of initial validity and reliability could be demonstrated with the involvement of healthcare professionals and bereaved parents. The Parental PELICAN Questionnaire holds promise as a measure to assess parental experiences and needs and is applicable to a broad range of paediatric specialties and settings. Future validation is needed to evaluate its suitability in different cultures. © 2015 John Wiley & Sons Ltd.

  5. Home care for children with multiple complex chronic conditions at the end of life: The choice of hospice versus home health.

    Science.gov (United States)

    Lindley, Lisa C; Mixer, Sandra J; Mack, Jennifer W

    2016-01-01

    Families desire to bring their children home at end of life, and this creates a variety of unique care needs at home. This study analyzed the child and family factors associated with hospice versus home health care use in the last year of life among children with multiple complex chronic conditions. Using the Andersen Behavioral Healthcare Utilization Model, the predisposing, enabling, and need factors of the child and family were shown to be significant predictors of hospice and home health care use. Hospice and home health care have advantages, and families may wish to use the service that best fits their needs.

  6. Avoiding costly hospitalisation at end of life: findings from a specialist palliative care pilot in residential care for older adults.

    Science.gov (United States)

    Chapman, Michael; Johnston, Nikki; Lovell, Clare; Forbat, Liz; Liu, Wai-Man

    2018-03-01

    Specialist palliative care is not a standardised component of service delivery in nursing home care in Australia. Specialist palliative care services can increase rates of advance care planning, decrease hospital admissions and improve symptom management in such facilities. New approaches are required to support nursing home residents in avoiding unnecessary hospitalisation and improving rates of dying in documented preferred place of death. This study examined whether the addition of a proactive model of specialist palliative care reduced resident transfer to the acute care setting, and achieved a reduction in hospital deaths. A quasi-experimental design was adopted, with participants at 4 residential care facilities. The intervention involved a palliative care nurse practitioner leading 'Palliative Care Needs Rounds' to support clinical decision-making, education and training. Participants were matched with historical decedents using propensity scores based on age, sex, primary diagnosis, comorbidities and the Aged Care Funding Instrument rating. Outcome measures included participants' hospitalisation in the past 3 months of life and the location of death. The data demonstrate that the intervention is associated with a substantial reduction in the length of hospital stays and a lower incidence of death in the acute care setting. While rates of hospitalisation were unchanged on average, length of admission was reduced by an average of 3.22 days (pcare service delivery in residential facilities. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.

  7. The effectiveness of communication-skills training interventions in end-of-life noncancer care in acute hospital-based services: A systematic review.

    Science.gov (United States)

    Lord, Laura; Clark-Carter, David; Grove, Amy

    2016-08-01

    A systematic review was conducted in order to explore the effectiveness of communication-skills training interventions in end-of-life care with noncancer acute-based healthcare staff. Articles were included if they (1) focused on communication-skills training in end-of-life/palliative care for noncancer acute-based staff and (2) reported an outcome related to behavior change with regard to communication. Sixteen online databases were searched, which resulted in 4,038 potential articles. Screening of titles left 393 articles that met the inclusion criteria. Abstracts (n = 346) and full-text articles (n = 47) were reviewed, leaving 10 papers that met the criteria for our review. All articles explored the effect of communication-skills training on aspects of staff behavior; one study measured the effect on self-efficacy, another explored the impact on knowledge and competence, and another measured comfort levels in discussing the end of life with patients/families. Seven studies measured a number of outcomes, including confidence, attitude, preparedness, stress, and communication skills. Few studies have focused on end-of-life communication-skills training in noncancer acute-based services. Those that do have report positive effects on staff behavior with regard to communication about the end of life with patients and families. The studies varied in terms of the population studied and the health services involved, and they scored only moderately or weakly on quality. It is a challenge to draw a definite conclusion about the effectiveness of training interventions in end-of-life communication because of this. However, the findings from our review demonstrate the potential effectiveness of a range of training interventions with healthcare professionals on confidence, attitude, self-efficacy, and communication skills. Further research is needed to fully explore the effectiveness of existing training interventions in this population, and evidence using objective measures

  8. Biting the Hands that Feed "the Alligators": A Case Study in Morbid Obesity Extremes, End-of-Life Care, and Prohibitions on Harming and Accelerating the End of Life.

    Science.gov (United States)

    Malinowski, Michael J

    2018-03-01

    Obesity, recognized as a disease in the U.S. and at times as a terminal illness due to associated medical complications, is an American epidemic according to the Centers for Disease Control and Prevention ("CDC"), American Heart Association ("AHA"), and other authorities. More than one third of Americans (39.8% of adults and 18.5% of children) are medically obese. This article focuses on cases of "extreme morbid obesity" ("EMO")-situations in which death is imminent without aggressive medical interventions, and bariatric surgery is the only treatment option with a realistic possibility of success. Bariatric surgeries themselves are very high risk for EMO patients. Individuals in this state have impeded mobility and are partially, if not entirely, bedridden, highly vulnerable, and dependent upon caregivers who often are enablers feeding their food addictions. The article draws from existing Centers for Medicare and Medicaid Services ("CMS") and Social Security Administration ("SSA") policies and procedures for severe obesity treatment and disability benefits. The discussion also encompasses myriad areas in which the law imposes a duty to report on professionals to protect vulnerable individuals from harm from others, and constraints and prohibitions on accelerating the end of life. The article proposes, among other law and policy measures, to introduce an obligation on medical professionals to investigate and report instances of enablement when food addiction has put the lives of individuals at risk of imminent death. The objectives of the proposals are to give providers more leverage to prevent food addiction enablers from impeding treatment and to enable EMO patients to comply with treatment protocols, to save lives and, ironically, to empower enablers to stand firm against the demands of individuals whose lives have been consumed by their food addictions.

  9. Interactional communication challenges in end-of-life care: dialectical tensions and management strategies experienced by home hospice nurses.

    Science.gov (United States)

    Gilstrap, Cristina M; White, Zachary M

    2015-01-01

    This study examines the dialectical tensions experienced by home hospice nurses in interactions with patients, families, and health care providers. In-depth, semistructured interviews were conducted with 24 home hospice nurses from a mid-size for-profit hospice organization serving approximately 230 patients on an annual basis. Interviews revealed hospice nurses experience both interpersonal and organizational dialectics during hospice interactions: authoritative-nonauthoritative, revelation-concealment, independence-collaboration, and quality of care-business of care. Dialectics often resulted as a by-product of (a) responding to expectations and care choices of patients and families particular to the emotionally charged home context, (b) obtaining authorization from health care providers who are not members of the interdisciplinary team, and (c) pressures associated with providing quality patient care while fulfilling organizational role requirements. The praxis strategies used to negotiate tensions included segmentation, balance, recalibration, and spiraling inversion. Specifically, nurses employed strategies such as ascertaining family/patient acceptance, using persuasive tactics when communicating with external health care providers, relying on effective time management, and working off the clock to provide more in-person care. Although functional for patients and hospice organizations, nurses who continually rely on these strategies may experience job stress when their interpersonal commitments repeatedly conflict with organizational role demands.

  10. The supportive roles of religion and spirituality in end-of-life and palliative care of patients with cancer in a culturally diverse context: a literature review.

    Science.gov (United States)

    López-Sierra, Héctor E; Rodríguez-Sánchez, Jesús

    2015-03-01

    This is a literature review of the supportive roles of religion and spirituality (R/S) in end-of-life (EoL) and palliative care of patients with cancer in a culturally diverse context. This review examines 26 noteworthy articles published between August 2013 and August 2014 from five well supported databases. Current evidence shows that R/S evokes in patients the sources to find the necessary inner strengths, which includes perspective thinking, rituals for transcending immediate physical condition and modalities of coping with their oncological illnesses. R/S are not a monolithically experience for they always manifest themselves in diverse cultural settings. As such, R/S provide the individual and their families with a practical context and social memory, which includes traditions and social family practices for maintaining meaning and well-being. Nonetheless, although various dimensions of R/S show a link between cancer risk factors and well being in cancer patients, more specific dimensions of R/S need to be studied taking into account the individuals' particular religious and cultural contexts, so that R/S variables within that context can provide a greater integrative structure for understanding and to move the field forward. Behavioral, cognitive and psychosocial scientists have taken a more in-depth look at the claims made in the past, suggesting that a relationship between R/S, cultural diversity and health exists. Case in point are the studies on EoL care, which have progressively considered the role of cultural, religion and spiritual diversity in the care of patients with oncological terminal illnesses. Beyond these facts, this review also shows that EoL supportive and palliative care providers could further enhance their practical interventions by being sensitive and supportive of cultural diversity. http://links.lww.com/COSPC/A10

  11. Decision making about medical interventions in the end-of-life care of people with intellectual disabilities: a national survey of the considerations and beliefs of GPs, ID physicians and