WorldWideScience

Sample records for providing end-of-life care

  1. The experience of providing end of life care at a children's hospice: a qualitative study.

    Science.gov (United States)

    McConnell, Tracey; Porter, Sam

    2017-02-13

    More attention is being paid to the wellbeing of staff working in stressful situations. However, little is known about staff experience of providing end-of-life care to children within a hospice setting. This study aims to explore the experiences of care team staff who provide end-of-life care within a children's hospice. Qualitative research incorporating interviews and a focus group. Data were analysed using thematic analysis. Purposeful sampling led to a total of 15 care team staff recruited from a children's hospice offering palliative and specialist care to life-limited children and young people. The hospice setting provides a model of excellence in supporting staff and mitigating challenging aspects of their role, which includes peer/organisational support, and regular ongoing training in key aspects of children's palliative care. Key recommendations for improving their experience included advanced communication training and knowledge sharing with other children's palliative care specialists within the acute setting. Service and policy initiatives should encourage open, informal peer/organisational support among the wider children's palliative care sector. Further research should focus on paediatric palliative care education, particularly in relation to symptom management and communication at end-of-life, harnessing the expertise and breadth of knowledge that could be shared between children's hospices and hospital settings.

  2. Challenges in Providing End-of-Life Care for People with Intellectual Disability: Health Services Access

    Science.gov (United States)

    Wark, Stuart; Hussain, Rafat; Müller, Arne; Ryan, Peta; Parmenter, Trevor

    2017-01-01

    Background: Increasing life expectancy for people with intellectual disability is resulting in greater need for end-of-life care services. However, limited knowledge is available regarding what barriers to accessing end-of-life care support are evident, particularly comparatively across rural and metropolitan locations. Methods: Focus group…

  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. Stressors experienced by nurses providing end-of-life palliative care in the intensive care unit.

    Science.gov (United States)

    Gélinas, Céline; Fillion, Lise; Robitaille, Marie-Anik; Truchon, Manon

    2012-03-01

    The purpose of this study was to describe stressors experienced by nurses in providing end-of-life palliative care (EoL/PC) in intensive care units (ICUs). A descriptive qualitative design was used. A total of 42 nurses from 5 ICUs in the province of Quebec, Canada, participated in 10 focus groups. Stressors were found to be clustered in 3 categories: organizational, professional, and emotional. The major organizational stressors were lack of a palliative care approach, interprofessional difficulty, lack of continuity in life-support and treatment plans, and conflicting demands. Professional stressors included lack of EoL/PC competencies and difficulty communicating with families and collaborating with the medical team. Emotional stressors were described as value conflicts, lack of emotional support, and dealing with patient and family suffering.The authors conclude that providing EoL/PC is stressful for ICU nurses and that education and support programs should be developed to ensure quality EoL/PC in the critical care environment.

  5. Challenges of Providing End-of-Life Care for Homeless Veterans.

    Science.gov (United States)

    Hutt, Evelyn; Whitfield, Emily; Min, Sung-Joon; Jones, Jacqueline; Weber, Mary; Albright, Karen; Levy, Cari; O'Toole, Thomas

    2016-05-01

    To describe challenges of caring for homeless veterans at end of life (EOL) as perceived by Veterans Affairs Medical Center (VAMC) homeless and EOL care staff. E-mail survey. Homelessness and EOL programs at VAMCs. Programs and their ratings of personal, structural, and clinical care challenges were described statistically. Homelessness and EOL program responses were compared in unadjusted analyses and using multivariable models. Of 152 VAMCs, 50 (33%) completed the survey. The VAMCs treated an average of 6.5 homeless veterans at EOL annually. Lack of appropriate housing was the most critical challenge. The EOL programs expressed somewhat more concern about lack of appropriate care site and care coordination than did homelessness programs. Personal, clinical, and structural challenges face care providers for veterans who are homeless at EOL. Deeper understanding of these challenges will require qualitative study of homeless veterans and care providers. © The Author(s) 2015.

  6. Existential distress among healthcare providers caring for patients at the end of life.

    Science.gov (United States)

    Pessin, Hayley; Fenn, Natalie; Hendriksen, Ellen; DeRosa, Antonio P; Applebaum, Allison

    2015-03-01

    Existential distress is well documented among patients at end of life (EOL) and increasingly recognized among informal caregivers. However, less information is known about existential concerns among healthcare providers working with patients at EOL, and the impact that such concerns may have on professionals. Recent literature documents five key existential themes for professionals working in EOL care: (1) opportunity for introspection; (2) death anxiety and potential to compromise patient care; (3) risk factors and negative impact of existential distress; (4) positive effects such as enhanced meaning and personal growth; and (5) the importance of interventions and self-care. EOL work can be taxing, yet also highly rewarding. It is critical for healthcare providers to make time for reflection and prioritize self-care in order to effectively cope with the emotional, physical, and existential demands that EOL care precipitates.

  7. End of Life Care

    Science.gov (United States)

    ... the person is not terminally ill. An informed refusal of medical treatment should always be respected. (Read ... to dry up secretions may also be used. Care and Treatment Palliative Care Palliative care is specialized ...

  8. Managing cardiac devices near the end of life: a survey of hospice and palliative care providers.

    Science.gov (United States)

    Morrison, Laura J; Calvin, Amy O; Nora, Hope; Porter Storey, C

    2010-12-01

    Implantable cardioverter defibrillators (ICDs) and pacemakers may change the character of an individual's eventual death. The objective of this study was to explore hospice and palliative care provider attitudes and experience in managing ICDs and pacemakers for patients near the end of life. A voluntary survey was distributed to session attendees at a national conference. Doctors and nurses surveyed overwhelmingly agreed it is appropriate to disable these devices in a terminally ill patient who does not wish to be resuscitated or prolong life. However, respondents emphasized a less defined burden for pacemakers. Respondents also reported limited involvement in such cases and few institutional protocols. As more terminal patients have these devices, research and education on device management protocols/guidelines and on provider communication skills are critical.

  9. 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.

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

    OpenAIRE

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

    2016-01-01

    Background 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. Methods 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) fo...

  11. What do Non-clergy Spiritual Care Providers Contribute to End of Life Care in Israel? A Qualitative Study.

    Science.gov (United States)

    Pagis, Michal; Tal, Orly; Cadge, Wendy

    2017-04-01

    Spiritual care is an increasingly important component of end of life care. As it emerges in Israel, it is intentionally built on a nonclerical model. Based on interviews with spiritual care providers in Israel, we find that they help patients and families talk about death and say goodbyes. They encourage the wrapping up of unfinished business, offer diverse cultural resources that can provide meaning, and use presence and touch to produce connection. As spiritual care emerges in Israel, providers are working with patients at the end of life in ways they see as quite distinct from rabbis. They offer broad frames of meaning to which patients from a range of religious traditions can connect.

  12. 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

  13. Perceived needs for support among care home staff providing end of life care for people with dementia: a qualitative study.

    Science.gov (United States)

    Vandrevala, T; Samsi, K; Rose, C; Adenrele, C; Barnes, C; Manthorpe, J

    2017-02-01

    The aim of the current exploratory study was to investigate the impact on care home staff when working with people with dementia at the end of life and to explore how they cope with this aspect of their work. With UK policy encouraging death in the place of residence, rather than hospital, more people with dementia are dying in care homes. A qualitative approach was employed; 20 care home staff working in five English care homes were interviewed. Thematic Analysis was used to analyse the data. Care home staff found the external demands on them and difficulties associated with interacting with people with dementia sometimes challenging, stressful and anxiety-provoking, particularly as residents approached end of life. Emotional aspects of caring for dying residents were sometimes heightened by close attachments with residents and their families. Staff were able to recognise these unmet needs and identified a need for further training and emotional support to manage these stressors. This study revealed rich and complex understandings of the practice dimensions of caring for people with dementia at the end of life and the impact these have on staff. There is a need to develop effective psychosocial interventions that focus on emotional support for care home staff. There will be challenges in providing this in employment settings that are generally low paid, low status, have high turnover and are reliant on temporary or migrant staff, where training is not rewarded, mandatory or culturally valued. Copyright © 2016 John Wiley & Sons, Ltd. Copyright © 2016 John Wiley & Sons, Ltd.

  14. 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.

  15. 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

    2017-10-13

    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.

  16. End-of-life care: improving quality of life at the end of life.

    Science.gov (United States)

    Eues, Stephanie K

    2007-01-01

    The purpose of this article is to identify barriers and interventions that influence quality of life at the end of life. PRIMARY PRACTICE SETTINGS(S): Primary care, acute inpatient care, case management, and end-of-life care settings. Death and dying affects the whole family, not just the individual who is dying. Early identification and recognition of end-of-life care choices heavily influence the quality of life an individual experiences during the dying process. Unfortunately, delaying end-of-life care plans is common. Over the years, the social structure and family structure have changed leaving many patients and families searching for viable end-of-life care options. Advancements in technology have affected the way medical professionals approach the end of life making a difficult decision for patients and families even more difficult by offering medical interventions that may not be necessary. To steer end-of-life care toward evidence-based practice standards, there needs to be additional research on the effectiveness of the various types of care available. Because case managers are often on the front lines of communicating and arranging end-of-life care, case managers need a clearer understanding of end-of-life care choices and how to communicate these choices to patients and families. The hospice and palliative care movements have been instrumental in increasing the understanding of end-of-life care and in providing patients alternatives to dying in the hospital. * Only 25% of patients eligible for hospice actually enter hospice programs.* The average time spent in hospice is 3 weeks.* The most significant barrier in coordinating and providing end-of-life care is inadequate communication.* Early discussion of prognosis and end-of-life care options helps facilitate earlier entry into hospice and palliative care programs.* The nursing profession needs additional research to determine the effectiveness of the various types of end-of-life care available and

  17. What matters most for end-of-life care? Perspectives from community-based palliative care providers and administrators.

    Science.gov (United States)

    Mistry, Bina; Bainbridge, Daryl; Bryant, Deanna; Tan Toyofuku, Sue; Seow, Hsien

    2015-06-29

    There has been little research conducted to understand the essential meaning of quality, community-based, end-of-life (EOL) care, despite the expansion of these services. The purpose of this study was to define what matters most for EOL care from the perspective of a diverse range of palliative care providers in the community who have daily encounters with death and dying. We used interviews to explore the perceptions of providers and administrators from 14 specialised palliative care teams in Ontario, Canada. Participants were prompted with the question 'What matters most for EOL care?' Responses were analysed using a phenomenological approach to derive themes depicting the universal essence of EOL care. Data from 107 respondents were obtained and analysed, from which 40 formulated concepts emerged; these were further grouped into 9 themes. Of the respondents, 39% were nurses, 19% physicians, 27% were supervisors or executives and 15% other. The most predominate concept was that Patient's Wishes are Fulfilled, cited by almost half the respondents. The most prominent themes were Addressing the Non-physical Needs, Healthcare Teams' Nature of Palliative Care Delivery, Patient Wishes are Honoured, Addressing the Physical Needs, Preparing for and Accepting Death, Communication and Relationship Development, and Involving and Supporting the Family. 9 critical domains of EOL care evolved from the interviews, indicating that quality EOL care extends beyond managing physical pain, but includes a holistic perspective of care, a healthcare team dedicated to the EOL journey and a patient-centred pathway. Tailoring the provision of care to consider these important elements plays a critical role in supporting a positive EOL experience for patients and families. 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.

  18. 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.

  19. [Living With Tolerable Burden: Exploring the Ethical Self of Nurses Who Provide End-of-Life Care].

    Science.gov (United States)

    Liu, Ying-Chun; Tai, Yu-Lun; Chiang, Hsien-Hsien

    2017-04-01

    Providing end-of-life (EOL) care elicits complex emotions in nurses in the context of modern medicine. Nurses must not only watch their patients succumb to disease and death but also witness their suffering. This qualitative study adopted the perspective of "the other", as proposed by Emmanuel Levinas, to understand the experience of nurses who provide EOL care and the possibilities of nurses build up their ethical selves within the context of modern medicine. The study used interpretative phenomenology and group dialogue. Thirteen nurses who had EOL care experience were included. Data were drawn from the six transcripts of the group sessions, the researcher's diaries, and participants' feedback sheets. Interpretative phenomenological analysis was used to analyze the data. The findings showed that nurses not only execute medical procedures but are also capable of self-molding into ethical subjects. The categories of participant experiences included: (1) encountering the death; (2) encountering my inner self; and (3) greeting the death. EOL nursing does not require abstract or decontextualized knowledge, but rather requires more experiential knowledge. EOL care may inspire nurses to become ethical persons and to gain wisdom if they shift away from a self-centered perspective to receive "the other". This study illustrates that EOL care should not depend solely on ethical codes or principles but should also adopt the attitudes of "for the other".

  20. 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

  1. 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 ... logo are trademarks of Mayo Foundation for Medical Education and Research. © 1998-2018 Mayo Foundation for Medical ...

  2. 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.

  3. [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.

  4. What matters most for end-of-life care? Perspectives from community-based palliative care providers and administrators

    National Research Council Canada - National Science Library

    Mistry, Bina; Bainbridge, Daryl; Bryant, Deanna; Tan Toyofuku, Sue; Seow, Hsien

    2015-01-01

    ... of palliative care providers in the community who have daily encounters with death and dying. We used interviews to explore the perceptions of providers and administrators from 14 specialised palliative care teams in Ontario, Canada...

  5. The Role of Health Care Provider Goals, Plans, and Physician Orders for Life-Sustaining Treatment (POLST) in Preparing for Conversations About End-of-Life Care.

    Science.gov (United States)

    Russell, Jessica

    2016-09-01

    The Physician Orders for Life-Sustaining Treatment (POLST) is a planning tool representative of an emerging paradigm aimed at facilitating elicitation of patient end-of-life care preferences. This study assessed the impact of the POLST document on provider goals and plans for conversations about end-of-life care treatment options. A 2 (POLST: experimental, control) × 3 (topic of possible patient misunderstanding: cardiopulmonary resuscitation, medical intervention, artificially administered nutrition) experimental design was used to assess goals, plan complexity, and strategies for plan alterations by medical professionals. Findings suggested that the POLST had little impact on plan complexity or reaction time with initial plans. However, preliminary evidence suggested that the utility of the POLST surfaced with provider responses to patient misunderstanding, in which differences in conditions were identified. Significant differences in goals reported as most important in driving conversational engagement emerged. Implications for findings are discussed.

  6. Impact of Symptoms and Care Practices on Nursing Home Residents at the End of Life: A Rating by Front-line Care Providers.

    Science.gov (United States)

    Hoben, Matthias; Chamberlain, Stephanie A; Knopp-Sihota, Jennifer A; Poss, Jeffrey W; Thompson, Genevieve N; Estabrooks, Carole A

    2016-02-01

    Burdensome symptoms and potentially inappropriate care practices are common at the end of life for nursing home residents. Appropriately managing symptoms and limiting aggressive care practices is key to high-quality end-of-life care. Little research is available, however, on the opinions of nursing home care providers about the impact of symptoms and practices for both residents and care facilities. Our objectives were to (1) identify common burdensome symptoms and potentially inappropriate practices at the end of life for nursing home residents, (2) develop and assess the feasibility of a procedure to have various groups of nursing home care providers rate impact of symptoms and practices, and (3) generate recommendations for action and further research, with key policy and decision makers. Proof-of-concept study. Partnered research by researchers, health professionals, and decision makers to identify and explore the impact of burdensome symptoms and potentially inappropriate care practices for nursing home residents at the end of life. Thirty-six nursing homes from Alberta, Manitoba, and Saskatchewan. A total of 6007 residents (prevalence rating); 4 medical directors, 5 directors of care, 4 nurse practitioners, 4 registered nurses, 5 licensed practical nurses, 5 care aides (impact rating); and 13 key policy or decision makers from Alberta, British Columbia, and Manitoba (expert panel). Based on a literature search and data in the Resident Assessment Instrument-Minimum Data Set (RAI-MDS) 2.0, we generated lists of burdensome symptoms and potentially inappropriate care practices for nursing home residents at the end of life. We rated prevalence of those symptoms and practices in the last quarter before death as high, medium, or low. Care providers rated the burden of symptoms and inappropriateness of practices as high, medium, or low. Directors of care rated the unnecessary cost of those symptoms and practices to a nursing home as high, medium, or low. We ranked

  7. Intensive care nurses' experiences of end-of-life care.

    Science.gov (United States)

    Kisorio, Leah C; Langley, Gayle C

    2016-04-01

    To explore intensive care nurses' experiences of end-of-life care in adult intensive care units. An exploratory, descriptive qualitative approach was utilised. Purposive sampling method was used to select nurse participants (n=24) working at the selected intensive care units in the three academic affiliated, tertiary specialist hospitals in the Johannesburg and Pretoria regions, South Africa. Using a focus group guide, three focus group discussions were conducted. Data were analysed using the long-table approach (Krueger and Casey, 2000). Trustworthiness of the study was ensured by following the criteria set out by Lincoln and Guba (1985). Five major themes related to nurses' experiences of end-of-life care emerged. These included: "difficulties we experience", "discussion and decision making", "support for patients", "support for families" and "support for nurses". End-of-life care can be difficult and a challenging process. Nevertheless, this study has highlighted some of the interventions and support systems that could be incorporated for improved caring process. Whereas the dying patients and their families need to be continuously supported, critical care nurses too need to be taken care of for them to continue providing the best possible end-of-life care. Copyright © 2015 Elsevier Ltd. All rights reserved.

  8. 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…

  9. Communication in palliative care: talking about the end of life, before the end of life.

    Science.gov (United States)

    Brighton, Lisa Jane; Bristowe, Katherine

    2016-08-01

    Increasing evidence demonstrates the benefits of early end-of-life care discussions with patients with life-threatening illness and their families. However, these conversations often do not occur. This review explores some of the many barriers faced by clinicians in relation to end-of-life care discussions, including prognostic uncertainty, fear of causing distress, navigating patient readiness and feeling unprepared for these conversations. The value of core clinical communication skills, potential strategies for improvement and areas for future research are also discussed. It is essential that clinicians offer patients facing life-threatening illness, and those close to them, the opportunity to discuss end-of-life issues in line with their information and decision-making preferences. With a growing and ageing global population, supporting both generalist and specialist providers of palliative care in this task is key. With careful preparation, fears of undertaking these discussions should not be a barrier to initiating them. 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/

  10. End-of-Life Care in Latin America

    Directory of Open Access Journals (Sweden)

    Enrique Soto-Perez-de-Celis

    2017-06-01

    Full Text Available Cancer has become a global pandemic with disproportionately higher mortality rates in low- and middle- income countries, where a large fraction of patients present in advanced stages and in need of end-of-life care. Globally, the number of adults needing end-of-life care is greater than 19 million, and up to 78% of these patients are living in low- and middle- income countries. In the Americas alone, more than one million people are in need of end-of-life care, placing an enormous burden on local health systems, which are often unprepared to meet the challenge presented by this complex patient population. In Latin America, cancer care is characterized by the presence of vast inequalities between and within countries, and the provision of end-of-life care is no exception. Disparities in access to advanced care planning, with a lack of provision of adequate palliative care and pain medication, are common in the region. These shortcomings are related in large part to inadequate or inappropriate legislation, lack of comprehensive national palliative care plans, insufficient infrastructure, lack of opportunities for clinical training, unreliable reporting of data, and cultural barriers. This report reviews the current status of end-of-life care in Latin America, focusing on identifying existing deficiencies and providing a framework for improvement.

  11. End-of-Life Care in Latin America

    Science.gov (United States)

    Soto-Perez-de-Celis, Enrique; Chavarri-Guerra, Yanin; Pastrana, Tania; Ruiz-Mendoza, Rossana; Bukowski, Alexandra

    2017-01-01

    Cancer has become a global pandemic with disproportionately higher mortality rates in low- and middle- income countries, where a large fraction of patients present in advanced stages and in need of end-of-life care. Globally, the number of adults needing end-of-life care is greater than 19 million, and up to 78% of these patients are living in low- and middle- income countries. In the Americas alone, more than one million people are in need of end-of-life care, placing an enormous burden on local health systems, which are often unprepared to meet the challenge presented by this complex patient population. In Latin America, cancer care is characterized by the presence of vast inequalities between and within countries, and the provision of end-of-life care is no exception. Disparities in access to advanced care planning, with a lack of provision of adequate palliative care and pain medication, are common in the region. These shortcomings are related in large part to inadequate or inappropriate legislation, lack of comprehensive national palliative care plans, insufficient infrastructure, lack of opportunities for clinical training, unreliable reporting of data, and cultural barriers. This report reviews the current status of end-of-life care in Latin America, focusing on identifying existing deficiencies and providing a framework for improvement. PMID:28717769

  12. Video Eases End-of-Life Care Discussions

    Science.gov (United States)

    Patients with advanced cancer who watched a video that depicts options for end-of-life care were more certain of their end-of-life decision making than patients who only listened to a verbal narrative.

  13. Hospital at home: home-based end of life care

    Science.gov (United States)

    Shepperd, Sasha; Wee, Bee; Straus, Sharon E

    2014-01-01

    Background The policy in a number of countries is to provide people with a terminal illness the choice of dying at home. This policy is supported by surveys indicating that the general public and patients with a terminal illness would prefer to receive end of life care at home. Objectives To determine if providing home-based end of life care reduces the likelihood of dying in hospital and what effect this has on patients’ symptoms, quality of life, health service costs and care givers compared with inpatient hospital or hospice care. Search methods We searched the Cochrane Central Register of Controlled Trials (CENTRAL) (The Cochrane Library) to October 2009, Ovid MED-LINE(R) 1950 to March 2011, EMBASE 1980 to October 2009, CINAHL 1982 to October 2009 and EconLit to October 2009. We checked the reference lists of articles identified for potentially relevant articles. Selection criteria Randomised controlled trials, interrupted time series or controlled before and after studies evaluating the effectiveness of home-based end of life care with inpatient hospital or hospice care for people aged 18 years and older. Data collection and analysis Two authors independently extracted data and assessed study quality. We combined the published data for dichotomous outcomes using fixed-effect Mantel-Haenszel meta-analysis. When combining outcome data was not possible we presented the data in narrative summary tables. Main results We included four trials in this review. Those receiving home-based end of life care were statistically significantly more likely to die at home compared with those receiving usual care (RR 1.33, 95% CI 1.14 to 1.55, P = 0.0002; Chi 2 = 1.72, df = 2, P = 0.42, I2 = 0% (three trials; N=652)). We detected no statistically significant differences for functional status (measured by the Barthel Index), psychological well-being or cognitive status, between patients receiving home-based end of life care compared with those receiving standard care (which

  14. 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: 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.

  15. Do nursing homes for older people have the support they need to provide end-of-life care? A mixed methods enquiry in England.

    Science.gov (United States)

    Seymour, Jane E; Kumar, Arun; Froggatt, Katherine

    2011-03-01

    Nursing homes are a common site of death, but older residents receive variable quality of end-of-life care. We used a mixed methods design to identify external influences on the quality of end-of-life care in nursing homes. Two qualitative case studies were conducted and a postal survey of 180 nursing homes surrounding the case study sites. In the case studies, qualitative interviews were held with seven members of nursing home staff and 10 external staff. Problems in accessing support for end-of-life care reported in the survey included variable support by general practitioners (GPs), reluctance among GPs to prescribe appropriate medication, lack of support from other agencies, lack of out of hours support, cost of syringe drivers and lack of access to training. Most care homes were implementing a care pathway. Those that were not rated their end-of-life care as in need of improvement or as average. The case studies suggest that critical factors in improving end-of-life care in nursing homes include developing clinical leadership, developing relationships with GPs, the support of 'key' external advocates and leverage of additional resources by adoption of care pathway tools.

  16. A study of the lived experiences of registered nurses who have provided end-of-life care within an intensive care unit.

    Science.gov (United States)

    Holms, Natalie; Milligan, Stuart; Kydd, Angela

    2014-11-01

    End-of-life care (EOLC) in the intensive care unit (ICU) has received little attention in the literature in comparison to the considerable amount of existing literature available on EOLC in other areas of nursing. The ethos of the ICU is to preserve life, but as many patients die in this environment, EOLC should be an integral part of the ICU nurse's role. This qualitative study explored the experiences of ICU nurses who had provided EOLC to patients and their families. Participants were purposively recruited within one local ICU (n=5). A semi-structured interview format was used to guide in-depth interviews. The themes identified from the interview analysis were; use of integrated care systems, communication, the environment, education and training, staff distress. The findings suggest that ICU nurses do not feel adequately prepared to give proficient EOLC. Those who felt more confident in EOLC had learned what to do over time. Appropriate training, support and improved communication between staff, patients and families is necessary for good EOLC in ICUs.

  17. Quality end-of-life care: A global perspective

    Directory of Open Access Journals (Sweden)

    Singer Peter A

    2002-07-01

    Full Text Available Abstract Background Quality end-of-life care has emerged as an important concept in industrialized countries. Discussion We argue quality end-of-life care should be seen as a global public health and health systems problem. It is a global problem because 85 % of the 56 million deaths worldwide that occur annually are in developing countries. It is a public health problem because of the number of people it affects, directly and indirectly, in terms of the well being of loved ones, and the large-scale, population based nature of some possible interventions. It is a health systems problem because one of its main features is the need for better information on quality end-of-life care. We examine the context of end-of-life care, including the epidemiology of death and cross-cultural considerations. Although there are examples of success, we could not identify systematic data on capacity for delivering quality end-of-life care in developing countries. We also address a possible objection to improving end-of-life care in developing countries; many deaths are preventable and reduction of avoidable deaths should be the focus of attention. Conclusions We make three recommendations: (1 reinforce the recasting of quality end-of-life care as a global public health and health systems problem; (2 strengthen capacity to deliver quality end-of-life care; and (3 develop improved strategies to acquire information about the quality of end-of-life care.

  18. Quality end-of-life care: A global perspective.

    Science.gov (United States)

    Singer, Peter A; Bowman, Kerry W

    2002-07-25

    BACKGROUND: Quality end-of-life care has emerged as an important concept in industrialized countries. DISCUSSION: We argue quality end-of-life care should be seen as a global public health and health systems problem. It is a global problem because 85 % of the 56 million deaths worldwide that occur annually are in developing countries. It is a public health problem because of the number of people it affects, directly and indirectly, in terms of the well being of loved ones, and the large-scale, population based nature of some possible interventions. It is a health systems problem because one of its main features is the need for better information on quality end-of-life care. We examine the context of end-of-life care, including the epidemiology of death and cross-cultural considerations. Although there are examples of success, we could not identify systematic data on capacity for delivering quality end-of-life care in developing countries. We also address a possible objection to improving end-of-life care in developing countries; many deaths are preventable and reduction of avoidable deaths should be the focus of attention. CONCLUSIONS: We make three recommendations: (1) reinforce the recasting of quality end-of-life care as a global public health and health systems problem; (2) strengthen capacity to deliver quality end-of-life care; and (3) develop improved strategies to acquire information about the quality of end-of-life care.

  19. Do nursing homes for older people have the support they need to provide end-of-life care? A mixed methods enquiry in England

    OpenAIRE

    Seymour, Jane E; Kumar, Arun; Froggatt, Katherine

    2011-01-01

    Nursing homes are a common site of death, but older residents receive variable quality of end-of-life care. We used a mixed methods design to identify external influences on the quality of end-of-life care in nursing homes. Two qualitative case studies were conducted and a postal survey of 180 nursing homes surrounding the case study sites. In the case studies, qualitative interviews were held with seven members of nursing home staff and 10 external staff. Problems in accessing support for en...

  20. End-of Life Care and Barriers for Female Inmates

    Science.gov (United States)

    Loeb, Susan J.; Penrod, Janice; Hollenbeak, Christopher S.; Smith, Carol A.

    2011-01-01

    The number of female inmates is growing, and their average age is increasing. As a result, end-of-life care is situated in a highly restrictive environment with a focus on security rather than comfort. We describe the need for and potential barriers to humane care and provide care strategies that can be useful in a complex organizational system. Frontline workers such as nurses who understand the balance between care and control must promote change in the women’s prison system. PMID:21645114

  1. End of life care simulation: a review of the literature.

    Science.gov (United States)

    Gillan, Pauline C; Jeong, Sarah; van der Riet, Pamela J

    2014-05-01

    Simulation is an evolving pedagogical approach to teaching in many undergraduate nursing curricula, however, there is little published literature on end of life care simulation as an effective means of teaching nursing students about end of life care. To examine available literature on end of life care simulation. An extensive literature search on end of life care simulation in the undergraduate nursing curriculum was conducted in CINAHL, Mosby's Index, Cochrane Database, Scopus, Eric via Proquest, and Medline. 6 research articles and 10 descriptive articles published between 2009 and 2013 that met the selection criteria are included in the review. Findings of these 16 articles are reported under 4 main themes: 1) Increased knowledge of end of life care through 'experiential learning'; 2) Impact of family presence on student learning; 3) the Debriefing imperative, and 4) Methodological issues raised from studies. The findings of the studies reviewed support end of life care simulation as a strong and viable pedagogical approach to learning for its positive effects on knowledge acquisition, communication skills, self-confidence, student satisfaction and level of engagement in learning. However, the important factors including psychological safety of students and the costs involved require careful consideration. Research on the use of simulation in nursing is still in its infancy, further research using various research designs is required to adequately explore the issues surrounding end of life care simulation. © 2013.

  2. End-of-life experience of children undergoing stem cell transplantation for malignancy: parent and provider perspectives and patterns of care.

    Science.gov (United States)

    Ullrich, Christina K; Dussel, Veronica; Hilden, Joanne M; Sheaffer, Jan W; Lehmann, Leslie; Wolfe, Joanne

    2010-05-13

    The end-of-life (EOL) experience of children who undergo stem cell transplantation (SCT) may differ from that of other children with cancer. To evaluate perspectives and patterns of EOL care after SCT, we surveyed 141 parents of children who died of cancer (response rate, 64%) and their physicians. Chart review provided additional information. Children for whom SCT was the last cancer therapy (n = 31) were compared with those for whom it was not (n = 110). SCT parents and physicians recognized no realistic chance for cure later than non-SCT peers (both P < .001) and were more likely to have a primary goal of cure at death (parents, P < .001; physicians, P = .02). SCT children were more likely to suffer highly from their last cancer therapy and die in the intensive care unit (both P < .001), with less opportunity for EOL preparation. SCT parents who recognized no realistic chance for cure more than 7 days before death along with the physician were more likely to prepare for EOL, and if their primary goal was to reduce suffering, to achieve this (P < .001). SCT is associated with significant suffering and less opportunity to prepare for EOL. Children and families undergoing SCT may benefit from ongoing discussions regarding prognosis, goals, and opportunities to maximize quality of life.

  3. [Spiritual end of life domiciliary care: a bibliographic review].

    Science.gov (United States)

    Sierra García, Marta; Getino Canseco, María

    2013-09-01

    This article is a descriptive literature review on the topic of spirituality, in a palliative care aimed at adult patients with different pathologies that are in an advanced stage of the disease. We analyze the sociocultural construction of spirituality at the end of life in the domiciliary environment, relating it to the disease process, its terminality and death. We describe the attention of the palliative-nurses, caring for the spiritual needs from a holistic point of view. It has to be considered that if the palliative-nurses are aware of the spirituality of patients with terminal illness should have some established strategies in their efforts to provide spiritual comfort.

  4. Palliative and end of life care for people with dementia.

    Science.gov (United States)

    Harrison Dening, Karen

    2016-02-03

    Dementia is a life-limiting condition that is largely a disease of ageing. However, older people in general, and older people with dementia in particular, have not always had equal access to effective palliative and end of life care. As a result, people with dementia at the end of life often receive aggressive and burdensome interventions, or inadequate assessment and management of their symptoms. Patterns in how people with dementia experience and present symptoms as they near the end of life can indicate when the goals of care should change and a palliative approach should be adopted.

  5. Australian nursing students' stories of end-of-life care simulation.

    Science.gov (United States)

    Gillan, Pauline Catherine; van der Riet, Pamela; Jeong, Sarah

    2016-03-01

    Because nurses are at the forefront of end-of-life care, it is imperative that nursing students are prepared for this role upon graduation. Research suggests that many nursing students are unprepared to deliver compassionate and quality end-of-life care. There have been many attempts to address this need; one emerging method is end-of-life care simulation. This paper explores the experiences of 18 undergraduate nursing students of end-of-life care simulation. Participants' stories were obtained via observation during end-of-life care simulation, audio-recorded post simulation debriefing, and semi-structured interviews. Using Clandinin and Connolly's three dimensions of Narrative Inquiry (temporality, spatiality, and sociality) participants' stories reflected convergence of time, place, and person. Findings revealed three distinct plotlines along a time continuum, specifically surrounding time of death: (i) "The privilege of end-of-life care;" (ii) "Witnessing death as surreal;" and (iii) "The honor of providing after-death care." Participants' narratives suggest that end-of-life care simulation is an important means of preparing students for clinical end-of-life care experiences. This has implications for nursing educators wishing to consider simulation in end-of-life care education. © 2015 Wiley Publishing Asia Pty Ltd.

  6. Theodicy and end-of-life care.

    Science.gov (United States)

    Dein, Simon; Swinton, John; Abbas, Syed Qamar

    2013-01-01

    This article examines theodicy-the vindication of God's goodness and justice in the face of the existence of evil from the perspectives of Judaism, Christianity, and Islam. We focus on the thought processes that chaplains, social workers, and other professionals may use in their care interventions to address issues of theodicy for patients. Theodical issues may cause anxiety and distress for believers, but they can also potentially be a source of relief and release. Palliative care patients with a religious worldview often struggle with whether God cares about, or has sent, their pain. How social workers and other clinicians respond to such questions will have a great impact on how patients express themselves and use their religious beliefs to cope with their situations. For patients holding religious/spiritual perspectives, discussion of theodicy may facilitate closer relationships between patients and their caregivers and result in more compassionate and empathic care.

  7. Nursing homes and end-of-life care in Japan.

    Science.gov (United States)

    Ikegami, Naoki; Ikezaki, Sumie

    2013-10-01

    To describe end-of-life care in Japanese nursing homes by comparing facility and characteristics of residents dying in nursing homes with those who had been transferred and had died in hospitals, and by comparing the quality of end-of-life care with hospitals and with their respective counterparts in the United States. National sample of 653 nursing homes with responses from 371 (57%) on their facility characteristics, 241 (37%) on their resident characteristics, and 92 (14%) on the residents' quality of life. All 5 hospitals in a city 80 miles from Tokyo cooperated. Nursing home staff answered questionnaires on facility and resident characteristics. Resident level data were obtained from 1158. The questionnaire on the quality of care was responded to by 256 (63%) of the decedents' families in nursing homes and 205 (48%) in hospitals. Facility characteristics included items on physicians, nurse staffing, and the facility's end-of-life care policy. Resident characteristics included basic demographics, level of dementia, and resident's and family's preference for the site of death. The Toolkit was used to measure the quality of end-of-life care. The proportion of those dying within the nursing home was related to the facility's policy on end-of-life care and the family's preference. The quality of end-of-life care in nursing homes was generally better than in hospitals, and than in their respective counterparts in the United States. Financial incentives by the Japanese government to promote end-of-life care in nursing homes may have contributed to increasing the proportion of deaths within the facility. The quality of care in nursing homes was evaluated as being better than hospitals. Copyright © 2013 American Medical Directors Association, Inc. Published by Elsevier Inc. All rights reserved.

  8. End-of-life care and dementia

    OpenAIRE

    Robinson, Louise; Hughes, Julian; Daley, Sarah; Keady, John; Ballard, Clive; Volicer, Ladislav

    2006-01-01

    In the UK, research continues to confirm that people with certain chronic illnesses, such as chronic lung disease and cardiac failure, represent the ‘disadvantaged dying’ compared to those with terminal cancer. But what is the situation for people dying with advanced dementia and what is the experience of their carers? Practical guidance for clinicians is scarce. In Standard 7 of the National Service Framework for Older People, which covers mental health, there is mention neither of how care ...

  9. 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

  10. Leading end-of-life care: an action learning set approach in nursing homes.

    Science.gov (United States)

    Hewison, Alistair; Badger, Frances; Swani, Tina

    2011-03-01

    If the end-of-life care needs of people living in nursing homes are to be met, effective leadership is necessary. This in turn requires that appropriate training and support are provided for nursing home managers. To meet this need, an action learning set (ALS) involving nursing home managers was developed, and as a result of the continuous process of learning and reflection that characterizes ALS work the managers brought about a number of improvements in end-of-life care. These included more consistent use of care plans, increased involvement of clients and their families in planning end-of-life care, more training for staff, and the use of events and techniques to create opportunities for discussing the end of life. The managers set specific individual objectives focused on improving end-of-life care and were supported in meeting them through their membership of the set.

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

    DEFF Research Database (Denmark)

    Jensen, Hanne Irene

    2012-01-01

    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...... (135) from 10 ICUs in the Region of Southern Denmark. Additionally the survey included primary physicians (146) from two regional ICUs. Subproject 4. Audit: Three interdisciplinary audits with the participation of 8 primary care physicians, 9 intensivists, and 12 nurses were conducted. Form and profit...... 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...

  12. Palliative and end of life care for people living with dementia in care homes: part 1.

    Science.gov (United States)

    Mitchell, Gary; Agnelli, Joanne; McGreevy, Jessie; Diamond, Monica; Roble, Herlindina; McShane, Elaine; Strain, Joanne

    2016-06-22

    The terms palliative and end of life care are often used interchangeably and healthcare practitioners may perceive that palliative care is only appropriate during the terminal stages of an illness. This article, the first of two parts, provides healthcare practitioners with an overview of the concept of palliative care. It explains how this can be differentiated from end of life care and how it should be commenced in a timely manner, so that people who are living with dementia can contribute to the planning of their future care and death. The policies and tools used in the provision of palliative and end of life care are discussed, including advance care planning and The Gold Standards Framework. The article is framed in a care home context; there is little research about how to optimise palliative care for people living with dementia in care homes. The second part of this article will discuss end of life care and the best practices for providing end of life care, including nutrition and hydration, oral hygiene, pain management and spiritual care.

  13. Barriers to excellent end-of-life care for patients with dementia

    National Research Council Canada - National Science Library

    Sachs, Greg A; Shega, Joseph W; Cox-Hayley, Deon

    2004-01-01

    ... the benefits of hospice care. In this paper, we discuss the most important and persistent challenges to providing excellent end-of-life care for patients with dementia, including dementia not being viewed as a terminal illness...

  14. End-of-life care in nursing and care homes.

    Science.gov (United States)

    Percival, John; Johnson, Malcolm

    More than 70,000 people die each year in nursing and residential care homes, yet comparatively little attention has been paid to end-of-life care practice and its challenges in this setting. We conducted interviews and group discussions in 12 homes, involving 73 residents, 97 members of staff and 16 relatives. These revealed that personalised care, dignity and respect, making time, talking about death, relatives' roles, and staff support were priorities for all concerned. Training is vital in helping staff to engage sensitively, respectfully and creatively with dying residents. Staffing levels must be sufficient so staff can sit with residents and care in a way that is attuned to their personality, life history and wishes. relatives help to ensure a "civilised death".

  15. Measuring End-of-Life Care Processes in Nursing Homes

    Science.gov (United States)

    Temkin-Greener, Helena; Zheng, Nan; Norton, Sally A.; Quill, Timothy; Ladwig, Susan; Veazie, Peter

    2009-01-01

    Purpose: The objectives of this study were to develop measures of end-of-life (EOL) care processes in nursing homes and to validate the instrument for measuring them. Design and Methods: A survey of directors of nursing was conducted in 608 eligible nursing homes in New York State. Responses were obtained from 313 (51.5% response rate) facilities.…

  16. 2016 AAHA/IAAHPC End-of-Life Care Guidelines.

    Science.gov (United States)

    Bishop, Gail; Cooney, Kathleen; Cox, Shea; Downing, Robin; Mitchener, Kathy; Shanan, Amir; Soares, Nancy; Stevens, Brenda; Wynn, Tammy

    End-of-life (EOL) care and decisionmaking embody the critical final stage in a pet's life and are as important and meaningful as the sum of the clinical care provided for all prior life stages. EOL care should focus on maximizing patient comfort and minimizing suffering while providing a collaborative and supportive partnership with the caregiver client. Timely, empathetic, and nonjudgmental communication is the hallmark of effective client support. Veterinarians should not allow an EOL patient to succumb to a natural death without considering the option of euthanasia and ensuring that other measures to alleviate discomfort and distress are in place. Animal hospice care addresses the patient's unique emotional and social needs as well as the physical needs traditionally treated in clinical practice. An EOL treatment plan should consist of client education; evaluating the caregiver's needs and goals for the pet; and a collaborative, personalized, written treatment plan involving the clinical staff and client. Primary care practices should have a dedicated team to implement palliative and hospice care for EOL patients. How the healthcare team responds to a client's grief after the loss of a pet can be a key factor in the client's continued loyalty to the practice. Referral to professional grief-support counseling can be a helpful option in this regard.

  17. Improving End-of-Life Care Knowledge Among Senior Baccalaureate Nursing Students.

    Science.gov (United States)

    Glover, Toni L; Garvan, Cynthia; Nealis, Rose M; Citty, Sandra W; Derrico, David J

    2017-12-01

    It is imperative that nurses are proficient and comfortable providing care to patients at the end of life. Recent studies show that nurses' knowledge of end-of-life care is less than optimal. Effective, evidence-based methods to infuse palliative and end-of-life care education into the undergraduate nursing curriculum are needed. A descriptive pre- and postassessment evaluating senior nursing students' acquisition of knowledge on end-of-life care after attending the End-of-Life Nursing Education Consortium (ELNEC) core course was conducted. The course evaluation included qualitative statements. Before the ELNEC course, one-third of the students had cared for a dying patient during clinical rotations, yet 85% reported they had not received adequate training in end-of-life care. Posttest questions related to palliative care, symptom management, communication, and grief indicated that students acquired significant knowledge after participating in the ELNEC course ( P nursing students' knowledge of palliative and end-of-life care.

  18. End-of-life care: pathways and evidence.

    Science.gov (United States)

    Costantini, Massimo; Alquati, Sara; Di Leo, Silvia

    2014-12-01

    Studies in different countries and settings of care have reported the quality of care for the dying patients as suboptimal. Care pathways have been developed with the aim of ensuring that dying patients and their family members received by health professionals the most appropriate care. This review presents and discusses the evidence supporting the effectiveness of the end-of-life care pathways. Two Cochrane systematic reviews updated at June 2013 did not identify studies that met minimal criteria for inclusion. One randomized cluster trial aimed at assessing the effectiveness of the Liverpool Care Pathway in hospitalized cancer patients was subsequently published. The trial did not find a significant difference in the overall quality of care, the primary end-point, but two out of nine secondary outcomes - respect, dignity, and kindness, and control of breathlessness showed significant improvements. Afterwards, we did not find any other potentially eligible published study. The overall amount of evidence supporting the dissemination of end-of-life care pathways is rather poor. One negative randomized trial suggests the pathways have the potential to reduce the gap between hospital and hospices. Further research is needed to understand the potential benefit of end-of-life care pathways.

  19. Measuring the quality of end-of-life care

    DEFF Research Database (Denmark)

    Ross, Lone; Neergaard, Mette Asbjoern; Petersen, Morten Aagaard

    2017-01-01

    BACKGROUND: The perspectives of patients and relatives are important in the improvement of the quality of health care. However, the quality of end-of-life care has not been systematically evaluated in Scandinavia. AIM: To develop or adapt and subsequently validate a questionnaire assessing....... RESULTS: Most of the important topics were covered by the Views of Informal Carers' Evaluation of Services-Short Form, but not all Danish settings (e.g. home care by a palliative team) were covered. These settings were added to the Views of Informal Carers' Evaluation of Services-Short Form, and a few...... the quality of end-of-life care in Denmark. The questionnaire was intended for bereaved relatives in order to assess the quality of care in the last 3 months of the patient's life and the circumstances surrounding death. DESIGN AND DATA SOURCES: Based on the literature and interviews with 15 bereaved...

  20. [The practical wisdom gained in the provision of end-of-life care].

    Science.gov (United States)

    Liu, Ying-Chun; Chiang, Hsien-Hsien

    2014-10-01

    The suffering experienced by nurses while providing end-of-life care to patients influences the lived experience of these nurses. The perspectives of "for the other" and "practical wisdom" may be used to elicit the experience of nurses in caring for dying patients and to help illustrate the ethical contents and meanings of end-of-life care. This study describes the experiences of nurses who have provided end-of life care in hospital settings. In-depth interviews were used to explore the respective experiences of 7 nurses. Data were analyzed using interpretative phenomenological analysis (IPA). The findings show that practicing and engaging in end-of-life care provide nurses the opportunity to acquire practical care wisdom in three categories, including (1) the emotional difficulties of patient care; (2) the limitations of the self; and (3) learning to adjust to the needs and pace of the patient. End-of-life care is an opportunity for both dying patients and nurses to transform and grow spiritually. Dealing with the emotional difficulties of end-of-life care, recognizing their self-limitations in care, and adjusting their care provision to meet the needs and pace of their patients help increase the awareness of nurses to the ethical responsibility they have toward patients. These findings give nurses new perspectives on caring for others.

  1. Broadening End-of-Life Comfort to Improve Palliative Care Practices in Long Term Care.

    Science.gov (United States)

    Sussman, Tamara; Kaasalainen, Sharon; Mintzberg, Susan; Sinclair, Shane; Young, Laurel; Ploeg, Jenny; Bourgeois-Guérin, Valérie; Thompson, Genevieve; Venturato, Lorraine; Earl, Marie; Strachan, Patricia; You, John J; Bonifas, Robin; McKee, Margaret

    2017-09-01

    This study aimed to (1) explore how palliative care in long-term care (LTC) addresses the tensions associated with caring for the living and dying within one care community, and (2) to inform how palliative care practices may be improved to better address the needs of all residents living and dying in LTC as well as those of the families and support staff. This article reports findings from 19 focus groups and 117 participants. Study findings reveal that LTC home staff, resident, and family perspectives of end-of-life comfort applied to those who were actively dying and to their families. Our findings further suggest that eliciting residents' perceptions of end-of-life comfort, sharing information about a fellow resident's death more personally, and ensuring that residents, families, and staff can constructively participate in providing comfort care to dying residents could extend the purview of end-of-life comfort and support expanded integration of palliative principles within LTC.

  2. Barriers to Excellent End-of-life Care for Patients with Dementia

    OpenAIRE

    Sachs, Greg A.; Shega, Joseph W.; Cox-Hayley, Deon

    2004-01-01

    While great strides have been made recently in improving end-of-life care in the United States, people with dementia often die with inadequate pain control, with feeding tubes in place, and without the benefits of hospice care. In this paper, we discuss the most important and persistent challenges to providing excellent end-of-life care for patients with dementia, including dementia not being viewed as a terminal illness; the nature of the course and treatment decisions in advanced dementia; ...

  3. Impact of a Palliative Care Elective Course on Nursing Students' Knowledge and Attitudes Toward End-of-Life Care.

    Science.gov (United States)

    Robinson, Evelyn; Epps, Fayron

    Being knowledgeable about end-of-life care can help nurses overcome barriers to managing chronicity in terminally ill patients. The purpose of this causal-comparative research study was to examine the influence of a palliative care elective course on 74 senior nursing students' knowledge and attitudes toward providing end-of-life care. This study compared the differences between 2 groups of students, with 1 group receiving end-of-life care instruction based on the principles of the End-of-Life Nursing Education Consortium as an elective course.

  4. 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...

  5. [Advance directives for end-of-life care].

    Science.gov (United States)

    Golan, Ofra G

    2009-04-01

    The provision of care for the dying patient confronts the caring team with very complex ethical dilemmas that doctors have no "medical" means to manage. Such decisions should be made according to the patient's will and preferences reflecting the value of life and the quality of life. However, many patients are not competent at this stage to decide or to express their wishes. Therefore, the Dying Patient Law of 2005, recognized advance expression of will through advance directives and power of attorney. Yet, there are many difficulties in the actual application of this idea. Dr. Shalev's article in this issue, to which this editorial relates, discusses the problems of communication between doctor and patient at the stage of preparing advance directives, and suggests a way to handle these deliberations. The Israeli law of 2005 provides some original solutions to other obstacles presented in the Literature as causing "the failure of the Living will". One resolution is the requirement that an explanation of the relevant medical information be given by a doctor or a nurse to the person who wishes to prepare written advance directives. This article suggests that the required explanation should be given within the framework of a discussion that simulates a process of informed consent for an unknown scenario at the end-of-life. Such discussions should be conducted as a dialogue, in which the doctor, first and foremost, Listens to the patient in order to clarify his/her worries and wishes, according to which specific medical orders can then be formulated.

  6. End of life issues in the intensive care units.

    Science.gov (United States)

    Datta, Rashmi; Chaturvedi, R; Rudra, A; Jaideep, C N

    2013-01-01

    A structured discussion of End-of-Life (EOL) issues is a relatively new phenomenon in India. Personal beliefs, cultural and religious influences, peer, family and societal pressures affect EOL decisions. Indian law does not provide sanction to contentious issues such as do-not-resuscitate (DNR) orders, living wills, and euthanasia. Finally, published data on EOL decisions in Indian ICUs is lacking. What is needed is a prospective determination of which patients will benefit from aggressive management and life-support. A consensus regarding the concept of Medical Futility is necessary to give impetus to further discussion on more advanced policies including ideas such as Managed Care to restrict unnecessary health care costs, euthanasia, the principle of withhold and/or withdraw, ethical and moral guidelines that would govern decisions regarding futile treatment, informed consent to EOL decisions and do-not-resuscitate orders. This review examines the above concepts as practiced worldwide and looks at some landmark judgments that have shaped current Indian policy, as well as raising talking points for possible legislative intervention in the field.

  7. Family involvement in end-of-life hospital care.

    Science.gov (United States)

    Tschann, Jeanne M; Kaufman, Sharon R; Micco, Guy P

    2003-06-01

    To examine whether the end-of-life treatment provided to hospitalized patients differed for those who had a family member present at death and those who did not. A retrospective cohort analysis. An urban community hospital. All 370 inpatients who died during a 1-year period. Medical records were examined for whether life-support treatments were provided or withdrawn, occurrence and timing of do-not-resuscitate (DNR) orders, and use of comfort measures such as narcotics and sedation. DNR orders were written for 85% of patients. For patients who had a DNR order written, the average time from the DNR order to death was 4.8 days. Only 26% of patients had one or more treatments withdrawn. Sixty-seven percent of patients received narcotics before death, and 22% received sedatives. Patients aged 75 and older and African Americans were less likely to have a family member present at death. After adjusting for age and ethnicity, patients who had a family member present at death were more likely to have DNR orders written, to have treatments withdrawn, and to receive narcotics before death. Patients with a family member present at death also had a shorter time to death after DNR orders were written. The presence of a family member at death appears to be an indirect measure of family involvement during patients' hospitalization. Family involvement before death may reduce the use of technology and increase the use of comfort care as patients die.

  8. End of life in the neonatal intensive care unit

    Directory of Open Access Journals (Sweden)

    Helena Moura

    2011-01-01

    Full Text Available PURPOSE: Death at the beginning of life is tragic but not uncommon in neonatal intensive care units. In Portugal, few studies have examined the circumstances surrounding the final moments of neonates. We evaluated the care given to neonates and their families in terminal situations and the changes that had occurred one decade later. DESIGN AND METHODS: We analyzed 256 charts in a retrospective chart review of neonatal deaths between two periods (1992-1995 and 2002-2005 in a level III neonatal intensive care unit. RESULTS: Our results show differences in the care of dying infants between the two periods. The analysis of the 2002-2005 cohort four years revealed more withholding and withdrawing of therapeutic activities and more effective pain and distress relief; however, on the final day of life, 95.7% of the infants received invasive ventilatory support, 76.3% received antibiotics, 58.1% received inotropics, and 25.8% received no opioid or sedative administration. The 2002-2005 cohort had more spiritual advisor solicitation, a higher number of relatives with permission to freely visit and more clinical meetings with neonatologists. Interventions by parents, healthcare providers and ethics committees during decision-making were not documented in any of the charts. Only eight written orders regarding therapeutic limitations and the adoption of palliative care were documented; seven (87.5% were from the 2002-2005 cohort. Parental presence during death was more frequent in the latter four years (2002-2005 cohort, but only 21.5% of the parents wanted to be present at that moment. CONCLUSION: Despite an increase in the withholding and withdrawing of therapeutic activities and improvements in pain management and family support, many neonates still receive curative and aggressive practices at the end of life.

  9. Companion-Animal Caregiver Knowledge, Attitudes, and Beliefs Regarding End-of-Life Care.

    Science.gov (United States)

    Heuberger, Roschelle A; Pierce, Jessica

    2017-01-01

    Although awareness of end-of-life care is growing within the veterinary field and there appears to be consumer demand for these services, it is unclear exactly what caregivers know about end-of-life options for their companion animals. Are companion-animal caregivers aware of the range of options for their nonhuman animals? What do they value most highly for their nonhuman animals at the end of life? Answers to these and other related questions about caregiver perceptions are important because what they know about end-of-life care and how they approach decision-making for their companion animals will shape the kind of care an animal receives. This article presents the results of a large survey exploring companion-animal caregivers' knowledge, attitudes, and beliefs about end-of-life care, including in-home euthanasia, hospice and palliative care, financial commitment to end-of-life care, insurance usage, and level of comfort in providing care (e.g., subcutaneous fluids) in the home.

  10. Music therapy for end-of-life care.

    Science.gov (United States)

    Bradt, Joke; Dileo, Cheryl

    2010-01-20

    Music therapy in end-of-life care aims to improve a person's quality of life by helping relieve symptoms, addressing psychological needs, offering support, facilitating communication, and meeting spiritual needs. In addition, music therapists assist family and caregivers with coping, communication, and grief/bereavement. To examine effects of music therapy with standard care versus standard care alone or standard care combined with other therapies on psychological, physiological, and social responses in end-of-life care. We searched CENTRAL, MEDLINE, CINAHL, EMBASE, PSYCINFO, LILACS, CancerLit, Science Citation Index, www.musictherapyworld.de, CAIRSS for Music, Proquest Digital Dissertations, ClinicalTrials.gov, Current Controlled Trials, and the National Research Register to September 2009. We handsearched music therapy journals and reference lists, and contacted experts to identify unpublished manuscripts. There was no language restriction. We included all randomized and quasi-randomized controlled trials that compared music interventions and standard care with standard care alone or combined with other therapies in any care setting with a diagnosis of advanced life-limiting illness being treated with palliative intent and with a life expectancy of less than two years. Data were extracted, and methodological quality was assessed, independently by review authors. Additional information was sought from study authors when necessary. Results are presented using weighted mean differences for outcomes measured by the same scale and standardized mean differences for outcomes measured by different scales. Posttest scores were used. In cases of statistically significant baseline difference, we used change scores. Five studies (175 participants) were included. There is insufficient evidence of high quality to support the effect of music therapy on quality of life of people in end-of-life care. Given the limited number of studies and small sample sizes, more research is

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

    Science.gov (United States)

    Pham, B; Krahn, M

    2014-01-01

    Background 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. Objective To evaluate the cost-effectiveness of end-of-life (EoL) care interventions included in the EoL care mega-analysis. Data Sources Multiple sources were used, including systematic reviews, linked health administration databases, survey data, planning documents, expert input, and additional literature searches. Review Methods 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. Results 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

  13. End of Life Issues in the Intensive Care Units

    OpenAIRE

    Datta, Rashmi; Chaturvedi, R.; Rudra, A.; Jaideep, C.N.

    2012-01-01

    A structured discussion of End-of-Life (EOL) issues is a relatively new phenomenon in India. Personal beliefs, cultural and religious influences, peer, family and societal pressures affect EOL decisions. Indian law does not provide sanction to contentious issues such as do-not-resuscitate (DNR) orders, living wills, and euthanasia. Finally, published data on EOL decisions in Indian ICUs is lacking. What is needed is a prospective determination of which patients will benefit from aggressive ma...

  14. Barriers of healthcare providers against end-of-life discussions with pediatric cancer patients.

    Science.gov (United States)

    Yoshida, Saran; Shimizu, Ken; Kobayashi, Mariko; Inoguchi, Hironobu; Oshima, Yoshio; Dotani, Chikako; Nakahara, Rika; Takahashi, Tomomi; Kato, Masashi

    2014-08-01

    End-of-life discussions with patients can be one of the most difficult and stressful tasks for the oncologist. However, little is known about the discussions that healthcare providers have with patients in such situations and the difficulties they face. The primary end points of this study were to describe the contents of end-of-life discussion in the pediatric setting and the barriers to end-of-life discussion for pediatric patients, as perceived by pediatric healthcare providers. Participants were 10 healthcare providers. Semi-structured interviews were conducted, and the KJ method was performed to analyze the data. We found 23 barriers against end-of-life discussion with pediatric cancer patients. These barriers were classified as follows: healthcare provider factors, patient factors, parent factors and institutional or cultural factors. In addition to barriers found in previous studies, some unique barriers were uncovered such as, 'Lack of confidence to face the patient after the discussion', 'Uncertain responsibility for treatment decision-making' and 'No compelling reason to discuss'. Healthcare providers actively discussed the purpose of treatment and the patients' wishes and concerns; however, they were reluctant to deal with the patients' own impending death and their estimated prognosis. End-of-life discussion with pediatric patients differs from that with adult patients. Further studies are required to analyze pediatric cases associated with end-of-life discussion and carefully discuss its adequacy, pros and cons. © The Author 2014. Published by Oxford University Press. All rights reserved. For Permissions, please email: journals.permissions@oup.com.

  15. 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 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.

  16. End-of-life care in U.S. nursing homes: nursing homes with special programs and trained staff for hospice or palliative/end-of-life care.

    Science.gov (United States)

    Miller, Susan C; Han, Beth

    2008-07-01

    The degree to which nursing homes have internal programs for hospice and palliative care is unknown. We used self-reported data from the 2004 National Nursing Home Survey (NNHS) to estimate the prevalence of special programs and (specially) trained staff (SPTS) for hospice or palliative/end-of-life care in U.S. nursing homes. Factors associated with the presence of SPTS for hospice or palliative/end-of-life care were identified. We merged 2004 NNHS data for 1174 nursing homes to county-level data from the 2004 Area Resource File and to Nursing Home 2004 Online Survey, Certification, and Reporting data. chi(2) tests and logistic regression models were applied. Twenty-seven percent of U.S. nursing homes reported (internal) SPTS for hospice or palliative/end-of-life care. After controlling for covariates, we found nonprofit status, being in the southern region of the United States, having an administrator certified by the American College of Health Care Administrators, contracting with an outside hospice provider, and having other specialty programs to be associated with a greater likelihood of nursing homes having SPTS for hospice or palliative/end-of-life care. The largest effects were observed for nursing homes with programs for behavioral problems (adjusted odds ratio [AOR] 3.59; 95% confidence interval [CI] 2.40, 5.37) and for pain management (AOR 5.92; 95% CI 4.09, 8.57). The presence of internal SPTS for hospice or palliative/end-of-life care is prevalent in U.S. nursing homes, and may be preceded by hospice contracting and/or the implementation of specialty programs that assist nursing homes in developing the expertise needed to establish their own palliative care programs.

  17. Using routine data to improve palliative and end of life care.

    Science.gov (United States)

    Davies, Joanna M; Gao, Wei; Sleeman, Katherine E; Lindsey, Katie; Murtagh, Fliss E; Teno, Joan M; Deliens, Luc; Wee, Bee; Higginson, Irene J; Verne, Julia

    2016-09-01

    Palliative and end of life care is essential to healthcare systems worldwide, yet a minute proportion of research funding is spent on palliative and end of life care research. Routinely collected health and social care data provide an efficient and useful opportunity for evaluating and improving care for patients and families. There are excellent examples of routine data research in palliative and end of life care, but routine data resources are widely underutilised. We held four workshops on using routinely collected health and social care data in palliative and end of life care. Researchers presented studies from the UK, USA and Europe. The aim was to highlight valuable examples of work with routine data including work with death registries, hospital activity records, primary care data and specialist palliative care registers. This article disseminates that work, describes the benefits of routine data research and identifies major challenges for the future use of routine data, including; access to data, improving data linkage, and the need for more palliative and end of life care specific data. 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. A framework for resolving disagreement during end of life care in the critical care unit.

    Science.gov (United States)

    Choong, Karen; Cupido, Cynthia; Nelson, Erin; Arnold, Donald M; Burns, Karen; Cook, Deborah; Meade, Maureen

    2010-08-01

    End-of-life decisions regarding the administration, withdrawal or withholding of life-sustaining therapy in the critical care setting can be challenging. Disagreements between health care providers and family members occur, especially when families believe strongly in preserving life, and physicians are resistant to providing medically "futile" care. Such disagreements can cause tension and moral distress among families and clinicians. To outline the roles and responsibilities of physicians, substitute decision makers, and the judicial system when decisions must be made on behalf of incapable persons, and to provide a framework for conflict resolution during end-of-life decision-making for physicians practicing in Canada. We used a case-based example to illustrate our objectives. We employed a comprehensive approach to understanding end-of-life decision making that included: 1) a search for relevant literature; 2) a review of provincial college policies; 3) a review of provincial legislation on consent; 4) a consultation with two bioethicists and 5) a consultation with two legal experts in health law. In Canada, laws about substitute decision-making for health care are primarily provincial or territorial. Thus, laws and policies from professional regulatory bodies on end-of-life care vary across the country. We tabulated the provincial college policies on end-of-life care and the provincial legislation on consent and advance directives, and constructed a 10-step approach to conflict resolution. Knowledge of underlying ethical principles, understanding of professional duties, and adoption of a process for mediation and conflict resolution are essential to ensuring that physicians and institutions act responsibly in maintaining a patients' best interests in the context of family-centred care.

  19. Proxy perspectives regarding end-of-life care for persons with cancer.

    Science.gov (United States)

    Bakitas, Marie; Ahles, Tim A; Skalla, Karen; Brokaw, Frances C; Byock, Ira; Hanscom, Brett; Lyons, Kathleen Doyle; Hegel, Mark T

    2008-04-15

    Each year, greater than a half million people die of cancer in the U.S. Despite progress in increasing access to palliative oncology services, end-of-life care still needs improvement. Measuring the quality of the end-of-life experience is difficult because of patient debility and reduced consciousness as death approaches. Family proxies have been proposed as valuable informants regarding the quality of end-of-life care. This article describes family proxy perspectives concerning care at the end of life in patients who died of advanced cancer. In the context of a novel outpatient palliative care demonstration project, 125 family proxy respondents completed a structured survey by telephone 3 months to 6 months after the patient's death from breast, lung, or gastrointestinal cancer. Four key quality of care indicators were measured: decision-making and physician communication, location of death, hospice involvement, and end-of-life symptoms. Proxies reported that 78% to 81% of patients completed at least 1 form of advance directive and approximately half of them were helpful in guiding care. Communication with physicians regarding end-of-life treatment wishes occurred in 67% of cases, but only 57% of the patients actually made a plan with their physician to ensure that their wishes were followed. The majority of patients died in their location of choice, most often at home, and greater than half had hospice involvement for an average of 41.8 days before death. During the last week of life, the majority of patients experienced troublesome physical and emotional symptoms. Measurement of proxy perspectives is feasible as an indicator of the quality of end-of-life care, and the results of the current study provide actionable data for areas of improvement in palliative oncology care.

  20. Barriers to excellent end-of-life care for patients with dementia.

    Science.gov (United States)

    Sachs, Greg A; Shega, Joseph W; Cox-Hayley, Deon

    2004-10-01

    While great strides have been made recently in improving end-of-life care in the United States, people with dementia often die with inadequate pain control, with feeding tubes in place, and without the benefits of hospice care. In this paper, we discuss the most important and persistent challenges to providing excellent end-of-life care for patients with dementia, including dementia not being viewed as a terminal illness; the nature of the course and treatment decisions in advanced dementia; assessment and management of symptoms; the caregiver experience and bereavement; and health systems issues. We suggest approaches for overcoming these barriers in the domains of education, clinical practice, and public policy. As the population ages, general internists increasingly will be called upon to provide primary care for a growing number of patients dying with dementia. There are great opportunities to improve end-of-life care for this vulnerable and underserved population.

  1. Context, mechanisms and outcomes in end of life care for people with advanced dementia.

    Science.gov (United States)

    Kupeli, Nuriye; Leavey, Gerard; Moore, Kirsten; Harrington, Jane; Lord, Kathryn; King, Michael; Nazareth, Irwin; Sampson, Elizabeth L; Jones, Louise

    2016-03-10

    The majority of people with dementia in the UK die in care homes. The quality of end of life care in these environments is often suboptimal. The aim of the present study was to explore the context, mechanisms and outcomes for providing good palliative care to people with advanced dementia residing in UK care homes from the perspective of health and social care providers. The design of the study was qualitative which involved purposive sampling of health care professionals to undertake interactive interviews within a realist framework. Interviews were completed between September 2012 and October 2013 and were thematically analysed and then conceptualised according to context, mechanisms and outcomes. The settings were private care homes and services provided by the National Health Service including memory clinics, mental health and commissioning services in London, United Kingdom. The participants included 14 health and social care professionals including health care assistants, care home managers, commissioners for older adults' services and nursing staff. Good palliative care for people with advanced dementia is underpinned by the prioritisation of psychosocial and spiritual care, developing relationships with family carers, addressing physical needs including symptom management and continuous, integrated care provided by a multidisciplinary team. Contextual factors that detract from good end of life care included: an emphasis on financial efficiency over person-centred care; a complex health and social care system, societal and family attitudes towards staff; staff training and experience, governance and bureaucratisation; complexity of dementia; advance care planning and staff characteristics. Mechanisms that influence the quality of end of life care include: level of health care professionals' confidence, family uncertainty about end of life care, resources for improving end of life care and supporting families, and uncertainty about whether dementia specific

  2. The impact of a simulated intervention on attitudes of undergraduate nursing and medical students towards end of life care provision.

    Science.gov (United States)

    Lewis, Claire; Reid, Joanne; McLernon, Zara; Ingham, Rory; Traynor, Marian

    2016-08-02

    The concerns of undergraduate nursing and medical students' regarding end of life care are well documented. Many report feelings of emotional distress, anxiety and a lack of preparation to provide care to patients at end of life and their families. Evidence suggests that increased exposure to patients who are dying and their families can improve attitudes toward end of life care. In the absence of such clinical exposure, simulation provides experiential learning with outcomes comparable to that of clinical practice. The aim of this study was therefore to assess the impact of a simulated intervention on the attitudes of undergraduate nursing and medical students towards end of life care. A pilot quasi-experimental, pretest-posttest design. Attitudes towards end of life care were measured using the Frommelt Attitudes Towards Care of the Dying Part B Scale which was administered pre and post a simulated clinical scenario. 19 undergraduate nursing and medical students were recruited from one large Higher Education Institution in the United Kingdom. The results of this pilot study confirm that a simulated end of life care intervention has a positive impact on the attitudes of undergraduate nursing and medical students towards end of life care (p nursing and medical students towards end of life. In the absence of clinical exposure, simulation is a viable alternative to help prepare students for their professional role regarding end of life care.

  3. An appraisal of ethical issues in end-of-life care.

    Science.gov (United States)

    Ilemona, Ekore Rabi

    2014-01-01

    Caring for patients at the end-of-life period could involve a number of situations and incidents that pose moral dilemma for both the health workers and the patients' family members or loved ones. Some of these issues include shared decision-making, the right to refuse medical treatment, medical futility, and euthanasia versus assisted suicide, information disclosure (truth-telling), substitute decision-making, and confidentiality. They may seem improbable or remote, until one is confronted with them real-time. Providing good care for dying patients requires that physicians and other members of the health care team be knowledgeable of ethical issues pertinent to end-of-life care.

  4. End-of-life care: a philosophical or management problem?

    Science.gov (United States)

    Callahan, Daniel

    2011-01-01

    End-of-life care became an important issue in the late 1960s and early 1970s. It was in great part driven by complaints about the care of the dying: lack of patient autonomy, indifferent or insensitive physicians, and inadequate pain control. The main task of those who worked to improve the situation centered on changing each of those variables, assuming that would do the job. But it has worked to a moderate extent only and the problem is not fully solved. The main omission has been a failure to confront the medical enterprise itself, which believes in endless progress and conducts a war against death. Only a change in those underlying values can bring about further significant change. © 2011 American Society of Law, Medicine & Ethics, Inc.

  5. Narrative Medicine and Contemplative Care at the End of Life.

    Science.gov (United States)

    Lewis, Bradley

    2016-02-01

    Two important movements leading the way toward a new approach to healthcare are narrative medicine and contemplative care. Despite considerable common ground between these two movements, they have existed largely parallel to each other, with different literatures, different histories, different sub-communities, and different practitioners. This article works toward integration of narrative medicine and contemplative care through a philosophical exploration of key similarities and differences between them. I start with an overview of their similar diagnosis of healthcare's problems and then consider their related, but different, responses to these problems. Finally, I use the example of Margaret Edson's Pulitzer Prize winning drama W;t to highlight how these issues can play out at the end of life.

  6. Community nursing quality indicators for end-of-life care in England: identification, preparation, and coordination.

    Science.gov (United States)

    Cook, Jane; Horrocks, Susan

    2016-03-01

    High-quality community nursing is essential to ensure that end-of-life care can be provided in community settings in line with patient preferences. This article examines the quality priorities commissioners sought to incentivise in end-of-life care, by reviewing a survey of Commissioning for Quality and Innovation (CQUIN) indicators for community nursing conducted in England in 2014-2015. Findings from the survey suggest that end-of-life care was not given a high priority with the CQUIN indicators for community nursing. Vigorous quality standards, including training and development, need to be in place to make sure that the potential of community nursing is being used to sensitively engage with people nearing the end of their lives and support them to plan their future care, if they so wish.

  7. Integrating Quality Palliative and End-of-Life Care into the Geriatric Assessment: Opportunities and Challenges.

    Science.gov (United States)

    Swagerty, Daniel

    2017-08-01

    This article provides an overview of how integrating quality palliative and end-of-life care into geriatric assessment can be a tremendous benefit to older adult patients and their families. Although the quality of palliative and end-of-life care for older adults has improved greatly, there are still many opportunities to improve the quality of life and function for older adult patients in the last few years of their life. More clinical expertise in comprehensive palliative and end-of-life care must be developed and maintained. There also must be greater focus and more direct reimbursement developed for physicians and health system providers. Copyright © 2017 Elsevier Inc. All rights reserved.

  8. End-of-Life Care for Undocumented Immigrants with Advanced Cancer: Documenting the Undocumented

    OpenAIRE

    Jaramillo, Sylvia; Hui, David

    2015-01-01

    There are approximately 11.1 million undocumented immigrants in the United States, with a majority being Latino. Cancer is now the leading cause of death in Latinos. There is little research guiding providers on how to deliver optimal end-of-life care in this population. We describe a case of an undocumented Latino patient with advanced cancer, and provide a review of the literature on end-of-life care in undocumented immigrants. Our patient encountered many challenges as he navigated through...

  9. End-of-life care at a community cancer center.

    Science.gov (United States)

    Cowall, David E; Yu, Bennett W; Heineken, Sandra L; Lewis, Elizabeth N; Chaudhry, Vishal; Daugherty, Joan M

    2012-07-01

    The evidence-based use of resources for cancer care at end of life (EOL) has the potential to relieve suffering, reduce health care costs, and extend life. Internal benchmarks need to be established within communities to achieve these goals. The purpose for this study was to evaluate data within our community to determine our EOL cancer practices. A random sample of 390 patients was obtained from the 942 cancer deaths in Wicomico County, Maryland, for calendar years 2004 to 2008. General demographic, clinical event, and survival data were obtained from that sample using cancer registry and hospice databases as well as manual medical record reviews. In addition, the intensity of EOL cancer care was assessed using previously proposed indicator benchmarks. The significance of potential relationships between variables was explored using χ(2) analyses. Mean age at death was 70 years; 52% of patients were male; 34% died as a result of lung cancer. Median survival from diagnosis to death was 8.4 months with hospice admission and 5.8 months without hospice (P = .11). Four of eight intensity-of-care indicators (ie, intensive care unit [ICU] admission within last month of life, > one hospitalization within last month of life, hospital death, and hospice referral < 3 days before death) all significantly exceeded the referenced benchmarks. Hospice versus nonhospice admissions were associated (P < .001) with ICU admissions (2% v 13%) and hospital deaths (2% v 54%). These data suggest opportunities to improve community cancer center EOL care.

  10. Hospice in Assisted Living: Promoting Good Quality Care at End of Life

    Science.gov (United States)

    Cartwright, Juliana C.; Miller, Lois; Volpin, Miriam

    2009-01-01

    Purpose: The purpose of this study was to describe good quality care at the end of life (EOL) for hospice-enrolled residents in assisted living facilities (ALFs). Design and Methods: A qualitative descriptive design was used to obtain detailed descriptions of EOL care provided by ALF medication aides, caregivers, nurses, and hospice nurses in…

  11. End-of-life care for neonates and infants: the experience and effects of a palliative care consultation service.

    Science.gov (United States)

    Pierucci, R L; Kirby, R S; Leuthner, S R

    2001-09-01

    Neonates and infants have the highest death rate in the pediatric population, yet there is a paucity of data about their end-of-life care and whether a palliative care service can have an impact on that care. The objective of this study was to describe end-of-life care for infants, including analysis of palliative care consultations conducted in this population. We hypothesized that the palliative care consultations performed had an impact on the infants' end-of-life care. A retrospective chart review using the "End of Life Chart Review" from the Center to Improve Care for the Dying was conducted. The participants were the patients at Children's Hospital of Wisconsin who died at palliative care consultations. The rate of consultations increased from 5% of the infant deaths in 1994 to 38% of the infant deaths in 1997. Infants of families that received consultations had fewer days in intensive care units, blood draws, central lines, feeding tubes, vasopressor and paralytic drug use, mechanical ventilation, cardiopulmonary resuscitation, and x-rays, and the families had more frequent referrals for chaplains and social services than families that did not have palliative care consultations. This study describes the end-of-life care that infants and their families received. Fewer medical procedures were performed, and more supportive services were provided to infants and families that had a palliative care consultation. This suggests that palliative care consultation may enhance end-of-life care for newborns.

  12. LGBT people's knowledge of and preparedness to discuss end-of-life care planning options.

    Science.gov (United States)

    Hughes, Mark; Cartwright, Colleen

    2014-09-01

    Despite the devastating impact of HIV/AIDS, end-of-life care planning among lesbian, gay, bisexual and transgender (LGBT) communities is relatively under-researched, especially in Australia. This paper reports findings of a survey of 305 LGBT people living in New South Wales, which examined their knowledge of and attitudes towards end-of-life care. The focus of this paper is their preparedness to discuss with healthcare providers any end-of-life care plans. The results highlight that while the majority of respondents were aware of three of the four key end-of-life care planning options available in New South Wales--enduring powers of attorney, enduring guardians and person responsible (only a minority had heard of advance healthcare directives)--a much smaller number of people had actually taken up these options. Only a minority of respondents were able to identify correctly who had the legal right to make treatment decisions for a person who is unconscious following a car accident. A small proportion of people had discussed end-of-life care options with general practitioners or another main healthcare provider, and only in very few cases were these issues raised by the practitioners themselves. Those most likely to not feel comfortable discussing these issues with practitioners included younger people, those not fully open about their sexuality to family members, and transgender people and others who do not define their gender as male or female. The paper highlights the importance of education strategies to raise awareness of the end-of-life care planning options among LGBT people, as well as strategies for increasing health providers' preparedness to discuss these issues with LGBT patients. © 2014 John Wiley & Sons Ltd.

  13. Pediatric Primary Care Involvement in End-of-Life Care for Children.

    Science.gov (United States)

    Lindley, Lisa C; Nageswaran, Savithri

    2017-03-01

    To examine the relationship between pediatric primary care involvement and hospice and home health care use at end of life. California Medicaid data were used to estimate the relationship between pediatric primary care involvement and use of hospice and home health care using generalized estimating equations. Of the 2037 children who died between 2007 and 2010, 11% used hospice and 23% used home health. Among all children, primary care was not related to hospice use and was associated with home health use, usual source of care (OR = 1.83, P care (OR = 1.60, P care (low: OR = 1.49, P Primary care for children aged 15 to 20 years was related to hospice use, usual source of care (OR = 4.06, P care (low: OR = 4.92, P Primary care for children under 5 years was associated with home health use, usual source of care (OR = 2.59, P care (OR = 2.49, P care (low: OR = 2.22, P care (moderate: OR = 2.38, P care (moderate: OR = 2.32, P Primary care involvement affected hospice use among older age-groups and home health use among younger age-groups. These findings underscore the need for clinical knowledge about end-of-life care for children of all ages among primary care providers.

  14. 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.

  15. Proxy Perspectives about End-of-Life Care for Person’s with Cancer

    Science.gov (United States)

    Bakitas, Marie; Ahles, Tim A.; Skalla, Karen; Brokaw, Frances C.; Byock, Ira; Hanscom, Brett; Lyons, Kathleen Doyle; Hegel, Mark T.

    2013-01-01

    Background Each year more than one-half million people die from cancer in the United States. Despite progress in increasing access to palliative oncology services, end-of-life care still needs improvement. Measuring the quality of the end-of-life experience is difficult due to patient debility and reduced consciousness as death approaches. Family proxies have been proposed as valuable informants regarding the quality of end-of-life care. This paper describes family proxy perspectives on care at the end of life in patients who died from advanced cancer Methods In the context of a novel outpatient palliative care demonstration project, 125 family proxy respondents completed a structured survey by phone 3–6 months following patients’ death from breast, lung, or gastrointestinal cancer. Four key quality of care indicators were measured: decision-making and physician communication, location of death, hospice involvement, and end-of-life symptoms. Results Proxies reported that 80% of patients completed advance directives and about half of them were helpful in guiding care; communication with physicians about end-of-life treatment wishes occurred in 67%, but less than half actually made a plan with the physician to ensure that their wishes were followed; the majority died in their location of choice, most often at home; over half had hospice involvement for an average of 41.8 days prior to death; and during the last week of life the majority of patients experienced troublesome physical and emotional symptoms. Conclusions Measurement of proxy perspectives is feasible and these results provide actionable data for areas of improvement in palliative oncology care. PMID:18306393

  16. End of life care in hematology: still a challenging concern.

    Science.gov (United States)

    Niscola, Pasquale; Tendas, Andrea; Scaramucci, Laura; Giovannini, Marco

    2014-01-01

    The majority of patients with hematological malignancies (HM) may experience troublesome symptoms and complicating clinical syndromes throughout all phases of disease. Therefore, among the current concepts concerning the comprehensive management of hematological patients, palliative care should exert a more ever expanding role, in particular in the advanced phases of disease, as there are special clinical needs (such as blood transfusions and anti-infective treatments), presented by this peculiar category of cancer patients. However, reported experiences on advanced HM patients claimed a too intensive level of medical care during the last week of life for which the needs of future and collaborative researches in order to set a proper allocation of medical resources and the optimal end-of-life care in the hematologic setting are highly awaited. Indeed, the most important aspect of caring for these suffering patients is to ameliorate or restore their quality of life (QoL) though a highly humanized approach, whereas technological and pharmacological measures should be limited enough to control the symptoms burden and the several kinds of sufferance that may complicate the final phase of disease course.

  17. End-of-life care bonus promoting end-of-life care in nursing homes: An 11-year retrospective longitudinal prefecture-wide study in Japan

    National Research Council Canada - National Science Library

    Nishiguchi, Sho; Sugaya, Nagisa; Sakamaki, Kentaro; Mizushima, Shunsaku

    2017-01-01

    The end-of-life (EOL) care bonus introduced by the Japanese government works as a financial incentive and framework of quality preservation, including advance care planning, for EOL care among nursing home residents...

  18. End-of-life communication in the intensive care unit.

    Science.gov (United States)

    Levin, Tomer T; Moreno, Beatriz; Silvester, William; Kissane, David W

    2010-01-01

    Because one in five Americans die in the intensive care unit (ICU), the potential role of palliative care is considerable. End-of-life (EOL) communication is essential for the implementation of ICU palliative care. The objective of this review was to summarize current research and recommendations for ICU EOL communication. For this qualitative, critical review, we searched PubMed, Embase, Cochrane, Ovid Medline, Cinahl and Psychinfo databases for ICU EOL communication clinical trials, systematic reviews, consensus statements and expert opinions. We also hand searched pertinent bibliographies and cross-referenced known EOL ICU communication researchers. Family-centered communication is a key component of implementing EOL ICU palliative care. The main forum for this is the family meeting, which is an essential platform for implementing shared decision making, e.g., transitioning from curative to EOL palliative goals of care. Better communication can improve patient outcomes such as reducing psychological trauma symptoms, depression and anxiety; shortening ICU length of stay; and improving the quality of death and dying. Communication strategies for EOL discussions focus on addressing family emotions empathically and discussing death and dying in an open and meaningful way. Central to this is viewing ICU EOL palliative care and withdrawal of life-extending treatment as predictable and not an unexpected emergency. Because the ICU is now a well-established site for death, ICU physicians should be trained with EOL communication skills so as to facilitate palliative care more hospitably in this challenging setting. Patient/family outcomes are important ways of measuring the quality of ICU palliative care and EOL communication. Copyright 2010 Elsevier Inc. All rights reserved.

  19. Spiritual care of the child with cancer at the end of life: a concept analysis.

    Science.gov (United States)

    Petersen, Cheryl L

    2014-06-01

    The aim of this paper is to report an analysis of the concept of spiritual care of a child with cancer at the end of life. Spirituality is a vital dimension of a child's experience at the end of life; providing comfort; support; and a sense of connection. Spiritual care is paramount to address the substantial spiritual distress that may develop. Rodgers' method of evolutionary concept analysis guided the review process. The literature search was not limited by start date and literature through the end of 2012 was included. English, peer-reviewed texts in the databases CINAHL, ATLA and PubMed were included. Critical analysis of the literature identified surrogate terms, related concepts, attributes, antecedents and consequences. The analysis identified six attributes: assessing spiritual needs; assisting the child to express feelings; guiding the child in strengthening relationships; helping the child to be remembered; assisting the child to find meaning; and aiding the child to find hope. Antecedents include existential questions and spiritual distress. Consequences include a peaceful death, spiritual growth, a relationship of trust and enhanced end-of-life care. Spiritual care is a vital aspect of holistic nursing care; however, gaps in knowledge and practice prevent children from receiving adequate spiritual care at the end of life. Nurses would benefit from increased awareness, skills and knowledge about spiritual care. Research is needed to identify interventions that exert the greatest effect on patient care outcomes. © 2013 John Wiley & Sons Ltd.

  20. End-of-life care among head and neck cancer patients.

    Science.gov (United States)

    Shuman, Andrew G; Yang, Ye; Taylor, Jeremy M G; Prince, Mark E

    2011-05-01

    This study is designed to (1) determine the perceived quality of care received by patients with head and neck cancer at the end of their lives, in order to (2) better anticipate and improve upon the experiences of future patients. Cross-sectional survey. Single-institution, academic tertiary care medical center. A validated survey instrument, the Family Assessment of Treatment at the End of life (FATE), was administered to families of patients who died of head and neck cancer (n = 58). The primary outcome was the overall FATE score. Independent variables included clinical characteristics, treatments received, and the care provided at the time of death. Overall FATE scores and the domains assessing management of symptoms and care at the time of death did not vary by disease status (logoregional vs distant metastasis) at the end of life (P = .989). The location of death in the home or in hospice (vs hospital) significantly improves scores in all 3 categories (P = .023). Involvement of a palliative care team improved the care at the time of death (P care at the time of death (P = .011, P = .017). The FATE survey is a useful measure of the end-of-life experience of head and neck cancer patients. Palliative treatments of head and neck cancer, death outside of the hospital, and palliative care team involvement all improve the end-of-life experience in this population.

  1. Provider-Prioritized Domains of Quality in Pediatric Home-Based Hospice and Palliative Care: A Study of the Ohio Pediatric Palliative Care and End-of-Life Network.

    Science.gov (United States)

    Thienprayoon, Rachel; Mark, Melissa San Julian; Grossoehme, Daniel

    2017-09-22

    Children receiving hospice and palliative care (HPC) differ from adults in important ways. Children are more likely to have rare diagnoses, less likely to have cancer, have longer lengths of stay on hospice, and are more likely to be technology dependent than adults. The National Consensus Project (NCP) in Palliative Care established domains of quality for HPC, but these domains have not been evaluated for applicability in children. This study aims to establish consensus stakeholder-prioritized domains of high-quality pediatric home-based hospice and palliative care (HBHPC). Mixed methods design. Providers from the Ohio Pediatric Palliative Care and End-of-life Network. Using a modified Delphi technique, providers were surveyed regarding the NCP quality domains for HPC. There was strong consensus on the applicability of each domain to the participants' practices (median scores ranged from 0.97 to 1.0 with interquartile ranges = 0). Consensus on the rank importance of the eight domains was not achieved. Qualitative data included challenges with NCP domain 3 (Psychological and Psychiatric Aspects of Care). It was recommended that titles should remain consistent with adult standards, but domain definitions should be broadened for pediatric HBHPC. Continuity and coordination of care should be added as a ninth domain of quality in pediatric HBHPC. All eight NCP domains were validated in pediatric HBHPC. A ninth domain, Continuity and Coordination of Care, was also added. Ranking the domains was not recommended as consensus indicated weighting them as equally integrated standards. Future studies are needed to evaluate parent- and patient-prioritized domains of quality in pediatric HBHPC and to validate and map pediatric-specific indicators to these domains.

  2. 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…

  3. 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

  4. 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.

  5. End-of-Life Care for Undocumented Immigrants With Advanced Cancer: Documenting the Undocumented.

    Science.gov (United States)

    Jaramillo, Sylvia; Hui, David

    2016-04-01

    There are approximately 11.1 million undocumented immigrants in the United States, with a majority being Latino. Cancer is now the leading cause of death in Latinos. There is little research guiding providers on how to deliver optimal end-of-life care in this population. We describe a case of an undocumented Latino patient with advanced cancer, and provide a review of the literature on end-of-life care in undocumented immigrants. Our patient encountered many challenges as he navigated through the healthcare system in the last months of life. These included delayed diagnosis, limited social support, financial issues, fear of deportation, and language and cultural barriers, which resulted in significant physical and psychological distress. Within the undocumented patient population, there is often a lack of advance care planning, prognostic understanding, mistrust, religious practices, and cultural beliefs that may affect decision making. Given the growing number of undocumented immigrants in the United States, it is important for clinicians and policy makers to have a better understanding of the issues surrounding end-of-life care for undocumented immigrants, and work together to improve the quality of life and quality of end-of-life care for these disadvantaged individuals. Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  6. Factors affecting family satisfaction with inpatient end-of-life care.

    Directory of Open Access Journals (Sweden)

    Erin Sadler

    Full Text Available BACKGROUND: Little data exists addressing satisfaction with end-of-life care among hospitalized patients, as they and their family members are systematically excluded from routine satisfaction surveys. It is imperative that we closely examine patient and institution factors associated with quality end-of-life care and determine high-priority target areas for quality improvement. METHODS: Between September 1, 2010 and January 1, 2012 the Canadian Health care Evaluation Project (CANHELP Bereavement Questionnaire was mailed to the next-of-kin of recently deceased inpatients to seek factors associated with satisfaction with end-of-life care. The primary outcome was the global rating of satisfaction. Secondary outcomes included rates of actual versus preferred location of death, associations between demographic factors and global satisfaction, and identification of targets for quality improvement. RESULTS: Response rate was 33% among 275 valid addresses. Overall, 67.4% of respondents were very or completely satisfied with the overall quality of care their relative received. However, 71.4% of respondents who thought their relative did not die in their preferred location favoured an out-of-hospital location of death. A common location of death was the intensive care unit (45.7%; however, this was not the preferred location of death for 47.6% of such patients. Multivariate Poisson regression analysis showed respondents who believed their relative died in their preferred location were 1.7 times more likely to be satisfied with the end-of-life care that was provided (p = 0.001. Items identified as high-priority targets for improvement included: relationships with, and characteristics of health care professionals; illness management; communication; and end-of-life decision-making. INTERPRETATION: Nearly three-quarters of recently deceased inpatients would have preferred an out-of-hospital death. Intensive care units were a common, but not preferred

  7. Factors affecting family satisfaction with inpatient end-of-life care.

    Science.gov (United States)

    Sadler, Erin; Hales, Brigette; Henry, Blair; Xiong, Wei; Myers, Jeff; Wynnychuk, Lesia; Taggar, Ru; Heyland, Daren; Fowler, Robert

    2014-01-01

    Little data exists addressing satisfaction with end-of-life care among hospitalized patients, as they and their family members are systematically excluded from routine satisfaction surveys. It is imperative that we closely examine patient and institution factors associated with quality end-of-life care and determine high-priority target areas for quality improvement. Between September 1, 2010 and January 1, 2012 the Canadian Health care Evaluation Project (CANHELP) Bereavement Questionnaire was mailed to the next-of-kin of recently deceased inpatients to seek factors associated with satisfaction with end-of-life care. The primary outcome was the global rating of satisfaction. Secondary outcomes included rates of actual versus preferred location of death, associations between demographic factors and global satisfaction, and identification of targets for quality improvement. Response rate was 33% among 275 valid addresses. Overall, 67.4% of respondents were very or completely satisfied with the overall quality of care their relative received. However, 71.4% of respondents who thought their relative did not die in their preferred location favoured an out-of-hospital location of death. A common location of death was the intensive care unit (45.7%); however, this was not the preferred location of death for 47.6% of such patients. Multivariate Poisson regression analysis showed respondents who believed their relative died in their preferred location were 1.7 times more likely to be satisfied with the end-of-life care that was provided (p = 0.001). Items identified as high-priority targets for improvement included: relationships with, and characteristics of health care professionals; illness management; communication; and end-of-life decision-making. Nearly three-quarters of recently deceased inpatients would have preferred an out-of-hospital death. Intensive care units were a common, but not preferred, location of in-hospital deaths. Family satisfaction with end-of-life

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

    Science.gov (United States)

    van der Wath, Anna E; du Toit, Pieter H

    2015-11-05

    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. 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. 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. 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. 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.

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

    Directory of Open Access Journals (Sweden)

    Anna E. van der Wath

    2015-07-01

    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.

  10. 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.

  11. End-of-life care in patients with advanced lung cancer.

    Science.gov (United States)

    Lim, Richard B L

    2016-10-01

    Despite advances in the detection, pathological diagnosis and therapeutics of lung cancer, many patients still develop advanced, incurable and progressively fatal disease. As physicians, the duties to cure sometimes, relieve often and comfort always should be a constant reminder to us of the needs that must be met when caring for a patient with lung cancer. Four key areas of end-of-life care in advanced lung cancer begin with first recognizing 'when a patient is approaching the end of life'. The clinician should be able to recognize when the focus of care needs to shift from an aggressive life-sustaining approach to an approach that helps prepare and support a patient and family members through a period of progressive, inevitable decline. Once the needs are recognized, the second key area is appropriate communication, where the clinician should assist patients and family members in understanding where they are in the disease trajectory and what to expect. This involves developing rapport, breaking bad news, managing expectations and navigating care plans. Subsequently, the third key area is symptom management that focuses on the goals to first and foremost provide comfort and dignity. Symptoms that are common towards the end of life in lung cancer include pain, dyspnoea, delirium and respiratory secretions. Such symptoms need to be anticipated and addressed promptly with appropriate medications and explanations to the patient and family. Lastly, in order for physicians to provide quality end-of-life care, it is necessary to understand the ethical principles applied to end-of-life-care interventions. Misconceptions about euthanasia versus withholding or withdrawing life-sustaining treatments may lead to physician distress and inappropriate decision making. © The Author(s), 2016.

  12. End-of-Life Cancer Care: Temporal Association between Homecare Nursing and Hospitalizations.

    Science.gov (United States)

    Seow, Hsien; Sutradhar, Rinku; McGrail, Kim; Fassbender, Konrad; Pataky, Reka; Lawson, Beverley; Sussman, Jonathan; Burge, Fred; Barbera, Lisa

    2016-03-01

    Most cancer patients want to die at home, but scaleable models to achieve this are not well researched. Our objective was to investigate the temporal association of homecare nursing, especially by generalist nurses, with reduced end-of-life hospitalizations. We conducted a retrospective Canadian cohort study of end-of-life cancer decedents during 2004-2009 in Ontario (ON), Nova Scotia (NS), and British Columbia (BC), which have homecare systems that use generalist nurses to provide end-of-life care. Each province linked administrative databases to examine the association during the last six months of life between the homecare nursing rate and the hospitalization rate in the subsequent week, using standardized definitions and controlling for other covariates. We dichotomized nursing into standard and end-of-life care intent. Our cohort included 83,827 cancer decedents. Approximately 55% of decedents were older than 70 and the most common cancer was lung. Nearly 85% of the cohort had at least one hospital admission. Receiving end-of-life compared to standard homecare nursing significantly reduced a patient's hospitalization rate by 34%, 33%, and 17% in ON, BC, and NS. In the last month of life patients having a standard nursing rate of greater than five hours compared to one hour per week had a significantly lower hospitalization rate (relative reduction of 15%-23%) across the three provinces. Our study showed a protective effect of nursing with an end-of-life intent on hospitalization across the last six months of life and of standard nursing in the last month. This finding's generalizability is strengthened, since the trends were similar across three different homecare systems.

  13. Family Satisfaction With End-of-Life Care in the Intensive Care Unit: A Systematic Review of the Literature.

    Science.gov (United States)

    DeSanto-Madeya, Susan; Safizadeh, Parissa

    Assessment of family satisfaction after the death of a loved one in the intensive care unit (ICU) provides a way to determine whether quality end-of-life care was received by the patient and family. The purpose of this systematic review was to explore the factors associated with family satisfaction with end-of-life care in the ICU. A systematic literature review was conducted using electronic databases CINAHL, MEDLINE, EMBASE, and PsychINFO. Databases were searched using a combination of search terms: "family satisfaction," "end of life," "intensive care unit," and "family." Results were limited to English-language reports of empirical studies published from January 2000 to January 2016. Studies describing adult family members' satisfaction with end-of-life care of patients admitted or transferred to an ICU were included in the review. The search yielded 466 articles. Review of the titles and abstracts resulted in 122 articles that underwent full review; 30 articles met study inclusion and were included in the final analysis. Major themes identified from the literature reviewed included communication, decision making, nursing care, ICU environment, and spiritual care. Families can provide valuable insight and information on the quality of care provided in the ICU at end of life. Their perceptions of communication, decision making, nursing care, the ICU environment, and spiritual support strongly influence their satisfaction or dissatisfaction with end-of-life care in the ICU. Personalized and frequent communication; assistance in the decision-making process; compassionate nursing care; a warm, family-friendly environment; and spiritual support can help alleviate the sequelae and enhance family satisfaction with end-of-life care in the ICU.

  14. End of life care in nursing homes: Translating focus group findings into action.

    Science.gov (United States)

    Bükki, Johannes; Neuhaus, Petra M; Paal, Piret

    Therapeutic options for nursing home residents focus on functional improvement, while inadequate hospital admissions in the dying phase are frequent. The aim of this study was to explore views, attitudes, and concerns among staff and to embark on a process that facilitates end-of-life care on an institutional level. Three focus group interviews were conducted with nursing home staff (nurses, care managers, physicians). The discussants (22) expressed the following issues: workload; ethical conflicts; additional resources; "living palliative care"; deleterious effect of restorative aims; lack of training; fear; knowledge and skills; rituals; lack of attachment, frustration, and abuse; team; discouragement; resilience enhanced by good care; style of communication; avoidance; the "palliative status"; legal concerns and hospital admissions. Nursing home staff expressed willingness to care for the dying. Providing good end of life care may promote professional resilience and personal integrity. Therefore, team issues, fears, and avoidance should be addressed. Copyright © 2016 Elsevier Inc. All rights reserved.

  15. Palliative and end-of-life care in nephrology: moving from observations to interventions.

    Science.gov (United States)

    Eneanya, Nwamaka D; Paasche-Orlow, Michael K; Volandes, Angelo

    2017-07-01

    In comparison with patients who have other serious illnesses, patients with advanced kidney disease have a higher rate of intensive care utilization at the end of life and receive palliative care less frequently. Consensus and clinical practice guidelines have therefore recommended the incorporation of palliative care earlier in the disease trajectory. This review summarizes recent literature on this aspect of care and will highlight future directions for patient-centered care within palliative nephrology. Patients with advanced kidney disease and their families frequently do not engage effectively with their clinicians to make informed treatment decisions or plan for care at the end of life. Furthermore, racial and ethnic minority patients continue to receive a lower rate of palliative care services compared to other racial groups. Interventions that promote better palliative care communication and education among nephrology clinicians, patients and their families are becoming increasingly more common in nephrology. Overall, improved understanding of the unique care needs of patients with advanced and end-stage kidney disease provides a solid foundation to improve palliative and end-of-life care delivery among diverse populations in nephrology.

  16. Measuring Experience With End-of-Life Care: A Systematic Literature Review.

    Science.gov (United States)

    Lendon, Jessica Penn; Ahluwalia, Sangeeta C; Walling, Anne M; Lorenz, Karl A; Oluwatola, Oluwatobi A; Anhang Price, Rebecca; Quigley, Denise; Teno, Joan M

    2015-05-01

    Increasing interest in end-of-life care has resulted in many tools to measure the quality of care. An important outcome measure of end-of-life care is the family members' or caregivers' experiences of care. To evaluate the instruments currently in use to inform next steps for research and policy in this area. We conducted a systematic review of PubMed, PsycINFO, and PsycTESTS(®) for all English-language articles published after 1990 using instruments to measure adult patient, family, or informal caregiver experiences with end-of-life care. Survey items were abstracted and categorized into content areas identified through an iterative method using three independent reviewers. We also abstracted information from the most frequently used surveys about the identification of proxy respondents for after-death surveys, the timing and method of survey administration, and the health care setting being assessed. We identified 88 articles containing 51 unique surveys with available content. We characterized 14 content areas variably present across the 51 surveys. Information and care planning, provider care, symptom management, and overall experience were the most frequent areas addressed. There was also considerable variation across the surveys in the identification of proxy respondents, the timing of survey administration, and in the health care settings and services being evaluated. This review identified several comprehensive surveys aimed at measuring the experiences of end-of-life care, covering a variety of content areas and practical issues for survey administration. Future work should focus on standardizing surveys and administration methods so that experiences of care can be reliably measured and compared across care settings. Published by Elsevier Inc.

  17. Empowering family members in end-of-life care decision making in the intensive care unit.

    Science.gov (United States)

    Browning, Annette M

    2009-01-01

    Critical care nurses are often faced with working with families during the end-of-life care of a loved one. Often there is indecisiveness in family members of critically ill patients when faced with making these difficult decisions. The purpose of this manuscript is to describe origins of indecisiveness in family members of critically ill patients who are faced with end-of-life care decisions. Strategies to empower family members during this crucial time are also discussed.

  18. Transition between care settings at end of life in the Netherlands: results from a nationwide study.

    NARCIS (Netherlands)

    Abarshi, E.; Echteld, M.; Block, L. van den; Donker, G.; Deliens, L.; Onwuteaka-Philipsen, B.

    2009-01-01

    Background: Transitions between care settings at the end of life could hinder continuity of care for the terminally ill, suggesting a low quality of end-of-life care. Objective: To examine the nature and prevalence of care setting transitions in the last 3 months of life in the Netherlands, and to

  19. Transition between care settings at end of life in the Netherlands: results from a nationwide study.

    NARCIS (Netherlands)

    Abarshi, E.; Echteld, M.; Block, L. van den; Donker, G.; Deliens, L.; Onwuteaka-Philipsen, B.

    2009-01-01

    Issue/problem: Transitions between care settings at the end of life could hinder continuity of care for the terminally ill, suggesting a low quality of end-of-life care. Aim: To examine the nature and prevalence of care setting transitions in the last 3 months of life in the Netherlands, and to

  20. Hospital at home: home-based end-of-life care.

    Science.gov (United States)

    Shepperd, Sasha; Gonçalves-Bradley, Daniela C; Straus, Sharon E; Wee, Bee

    2016-02-18

    The policy in a number of countries is to provide people with a terminal illness the choice of dying at home. This policy is supported by surveys indicating that the general public and people with a terminal illness would prefer to receive end-of-life care at home. This is the fourth update of the original review. To determine if providing home-based end-of-life care reduces the likelihood of dying in hospital and what effect this has on patients' symptoms, quality of life, health service costs, and caregivers, compared with inpatient hospital or hospice care. We searched the following databases until April 2015: Cochrane Central Register of Controlled Trials (CENTRAL) (the Cochrane Library), Ovid MEDLINE(R) (from 1950), EMBASE (from 1980), CINAHL (from 1982), and EconLit (from 1969). We checked the reference lists of potentially relevant articles identified and handsearched palliative care publications, clinical trials registries, and a database of systematic reviews for related trials (PDQ-Evidence 2015). Randomised controlled trials, interrupted time series, or controlled before and after studies evaluating the effectiveness of home-based end-of-life care with inpatient hospital or hospice care for people aged 18 years and older. Two review authors independently extracted data and assessed study quality. We combined the published data for dichotomous outcomes using fixed-effect Mantel-Haenszel meta-analysis. When combining outcome data was not possible, we reported the results from individual studies. We included four trials in this review and did not identify new studies from the search in April 2015. Home-based end-of-life care increased the likelihood of dying at home compared with usual care (risk ratio (RR) 1.33, 95% confidence interval (CI) 1.14 to 1.55, P = 0.0002; Chi(2) = 1.72, df = 2, P = 0.42, I(2) = 0%; 3 trials; N = 652; high quality evidence). Admission to hospital while receiving home-based end-of-life care varied between trials, and this was

  1. 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.

  2. [Palliative care in patients without cancer: Impact of the end-of-life care team].

    Science.gov (United States)

    Nishikawa, Mitsunori; Yokoe, Yuriko; Kubokawa, Naomi; Hukuda, Koji; Hattori, Hideyuki; Hong, Young-Jae; Miura, Hisayuki; Shibasaki, Masataka; Endo, Hidetoshi; Takeda, Jun; Odate, Mitsuru; Senda, Kazuyoshi; Nakashima, Kazumitsu

    2013-01-01

    Palliative care improves the quality of life of patients and their families facing problems associated with life-threatening illnesses by promoting the prevention and relief of suffering. Palliative care in Japan has been developed mainly for cancer patients. At the National Center for Geriatrics and Gerontology, an end-of-life care team (EOLCT) has been developed to promote palliative care for patients without cancer. In the first 6 months of its operation, 109 requests were received by the team, 40% of which were for patients without cancer or related disease, including dementia, frailty due to advanced age, chronic respiratory failure, chronic heart failure, and intractable neurologic diseases. The main purpose of the EOLCT is to alleviate suffering. The relevant activities of the team include the use of opioids, providing family care, and giving support in decision-making (advance care planning) regarding withholding; enforcement; and withdrawal of mechanical ventilators, gastric feeding tubes, and artificial alimentation. The EOLCT is also involved in ongoing discussions of ethical problems. The team is actively engaged in the activities of the Japanese Geriatric Society and contributes to the development of decision-making guidelines for end-of-life by the Ministry of Health, Labour and Welfare. The EOLCT can be helpful in promoting palliative care for patients with diseases other than cancer. The team offers support during times of difficulty and decision-making.

  3. A Discourse Analysis: One Caregiver's Voice in End-of-Life Care.

    Science.gov (United States)

    Kitt-Lewis, Erin; Strauss, Susan; Penrod, Janice

    2018-02-01

    Informal family caregivers make a significant contribution to the U.S. health care system, and the need for caregivers will likely increase. Gaining deeper insights into the caregiver experience will provide essential knowledge needed to support the future caregiver workforce delivering care. Discourse analysis is a viable approach in analyzing textual caregiver data that focuses on the end-of-life caregiving experience. The purpose of this study was to conduct an in-depth discourse analytic examination of 13 hours of caregiver interview data, which reveal the multiplicity of shifting stances and perceptions of one caregiver in the midst of end-of-life care, specifically with regard to his perceptions of self (caregiver) and other (care recipient). By isolating a specific but limited set of reference terms used throughout the discourse, we gained systematic glimpses into the mind and perceptions of this single caregiver in relation to his role as caregiver for his terminally ill wife.

  4. Palliative and end-of-life decision-making in dementia care.

    Science.gov (United States)

    Mitchell, Gary

    2015-11-01

    This paper will highlight some of the pertinent issues associated with palliative and end-of-life decision-making in relation to dementia. To achieve this, the author will consider why there is disparity in relation to shared decision-making practices across non-malignant disease through exploration of models of disease trajectories. The author will then go on to highlight how people living with dementia, a non-malignant disease, have a human right to receive palliative care and be an active agent in the shared decision-making process about their future and care preferences. The challenges of shared decision-making in dementia care will be discussed along with some implications for nursing practice. The aim of this paper is to provide nurses, practising across all settings, with an overview of the fundamental importance of timely palliative and end-of-life shared decision-making in dementia care.

  5. 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.

  6. Development of a supportive care measure for economic evaluation of end-of-life care using qualitative methods.

    Science.gov (United States)

    Sutton, Eileen J; Coast, Joanna

    2014-02-01

    An imperative to assess the economic impact of care at the end of life is emerging in response to national policy developments in a number of settings. Current focus on health benefits in economic evaluation may not appropriately capture benefits of interventions at the end of life. No instruments are available for measuring such benefits for economic evaluation of end-of-life care. To develop a descriptive system for a measure for use in economic evaluation of end-of-life care. An initial phase of in-depth interviews was conducted to develop conceptual attributes for inclusion in a measure; a second phase of semi-structured repeat interviews with a subsample of informants was carried out to clarify and confirm the final set of attributes and to develop meaningful wording for a measure. In total, 23 older people from three groups across the dying trajectory: older people (1) within the general population, (2) living in residential care and (3) receiving palliative care. Interviews suggested that the important domains to include within this framework from the perspective of those approaching the end-of-life are choice/having a say in decision-making, love and affection/being with people who care, freedom from physical suffering, freedom from emotional suffering, dignity and self-respect, support, and preparation. A full descriptive system comprising seven questions, each representing one attribute, was developed. Economic evaluation should reflect the broader benefits of end-of-life care. Although the supportive care measure developed here requires validation and valuation, it provides a substantial step forward in appropriate economic evaluation of end-of-life care.

  7. Prioritizing lectures on end of life care in a Nigerian Medical School ...

    African Journals Online (AJOL)

    Prioritizing lectures on end of life care in a Nigerian Medical School: final year medical students' perspectives. A Akoria Obehi. Abstract. No Abstract. Keywords: End-of-life Care, Palliative Care, Dying & Death, Medical Students, Nigeria. Full Text: EMAIL FULL TEXT EMAIL FULL TEXT · DOWNLOAD FULL TEXT ...

  8. New challenges and old problems: end of life care and the dilemma of prognostic accuracy.

    Science.gov (United States)

    Tanneberger, K S; Pannuti, F; Malavasi, I; Mariano, P; Strocchi, E

    2002-01-01

    Dignity of the natural end of life for everybody is one of the new great challenges of medicine and social care for the beginning 21st century. However, many end of life care providing doctors are confused about how to categorize the help they give. One of the central problems is predicting the life expectancy of an individual patient. Difficulties in this field can become ethical dilemmas when physicians are obliged to predict accurately a patient's prognosis as the basis for a certain care strategy. Clinical estimation of the duration of life for patients with end of life cancer needs experience and training. Education programmes in the field should include this topic much more until now. Prognosis should be based more on proven indices and less on intuition. However, there is no doubt that daily clinical practice limits the use of highly sophisticated computer-based score models. Even maximal accuracy of prognosis will not exclude the risk of errors in a great part of patients. This limits their classification in care categories too strictly defined. Health care systems should avoid models for care with standards and budgets based on prognostic estimates and the medical community should avoid claim by disciplines of certain categories of patients defined by their prognoses. What we need is a network of assistance for incurable patients with single parts defined by patients needs and not by predicted life expectancy. Separating palliative and terminal care is artificial and often in contrast to the needs of the patients.

  9. 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.

  10. End-of-life care in intensive care units

    African Journals Online (AJOL)

    2006-11-16

    Nov 16, 2006 ... euthanasia or assisted suicide, or in hastening death in response to a perceived overuse of technology or over- aggressive treatment, to relieve suffering or counter the perception of physician unresponsiveness to the patient's suffering. To care for the patient who is approaching death,. ICU clinicians need ...

  11. Attitudes of health care professionals to opioid prescribing in end-of-life care: a qualitative focus group study.

    Science.gov (United States)

    Gardiner, Clare; Gott, Merryn; Ingleton, Christine; Hughes, Philippa; Winslow, Michelle; Bennett, Michael I

    2012-08-01

    Opioid therapy is central to the management of pain in the field of generalist palliative and end-of-life care, and international guidelines highlight the need for opioids to be used as part of a comprehensive strategy to treat pain. However, evidence suggests that the use of opioids in palliative care is suboptimal, and many patients do not receive adequate pain control at the end of life. This study aimed to explore the attitudes of health care professionals to opioid prescribing in generalist end-of-life care. Thirty-one health and allied health professionals participated in four focus groups. Two focus groups took place in general practitioner practices and two in hospices. Findings revealed that significant barriers exist to the appropriate use of opioids in end-of-life care. Particular barriers exist for professionals working in primary care and include concerns about giving high doses and having insufficient training in opioid use. Working partnerships between specialist and generalist palliative care providers are important for increasing generalist confidence in prescribing. Patients and their families often have concerns about initiating opioids, and specialist nursing staff are crucial to managing and alleviating these concerns. Significant barriers exist to the appropriate use of opioids in end-of-life care. If international priorities on improving pain management at the end of life are to be achieved, educational opportunities for generalists need to be enhanced, and effective interprofessional working models need to be developed so that pain management for patients at the end of life is optimized. Copyright © 2012 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

  12. Senior Nursing Students' Perceptions of Caring for Patients at the End of Life.

    Science.gov (United States)

    Colley, Sharon L

    2016-05-01

    Nursing students often feel unprepared to provide end-of-life care. Studies have examined students' learning outcomes and attitudes regarding end-of-life care, but it is unclear how students perceived their nursing program prepared them in both knowledge and confidence. Such research could help inform curricula revisions. This pilot study used a primarily qualitative approach with narrative questions and quantitative survey questions to a lesser degree. Seventy-one students from three baccalaureate nursing cohorts were participants. Five themes became apparent: Students Have Confidence in Provision of Physical Care, Students Lack Confidence in Provision of Emotional Care, Students Experience Stress and Lack of Knowledge When Caring for Families, Students Have Concern They Will Be Too Emotionally Involved, and Students Feel Personal Experiences Enhance Their Confidence. Student perceptions are important to consider when revising curricula to enhance learning and promote confidence in addressing emotional care at the end of life. [J Nurs Educ. 2016;55(5):279-283.]. Copyright 2016, SLACK Incorporated.

  13. 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

  14. Seven legal barriers to end-of-life care: myths, realities, and grains of truth.

    Science.gov (United States)

    Meisel, A; Snyder, L; Quill, T

    2000-11-15

    The American College of Physicians-American Society of Internal Medicine (ACP-ASIM) End-of-Life Care Consensus Panel was convened in 1997 to identify clinical, ethical, and policy problems in end-of-life care, to analyze critically the available evidence and guidelines, and to offer consensus recommendations on how to improve care of the dying. Topic selection and content presentation were carefully debated to maximize the project's focus on providing practical clinical and other guidance to clinicians who are not specialists in palliative care. This statement examines current legal myths, realities, and grains of truth in end-of-life care. The Consensus Panel comprises 13 medical and bioethics experts, clinicians, and educators in care at the end of life selected by the Ethics and Human Rights Committee, College leadership, and the Center for Ethics and Professionalism at the ACP-ASIM. A literature review including a MEDLINE search of articles from 1970-1998 and review of end-of-life care literature and organizational bibliographies was conducted. Unpublished sources were also identified by participants, as was anecdotal clinical experience. The draft statement was debated by panel members over a series of 3 to 4 meetings. For this statement, the initial draft and subsequent revised drafts were discussed in 1998-1999. The statement then underwent external peer review and revision before panel approval and the journal peer review process. Legal myths about end-of-life care can undermine good care and ethical medical practice. In addition, at times ethics, clinical judgment, and the law conflict. Patients (or families) and physicians can find themselves considering clinical actions that are ethically appropriate, but raise legal concerns. The 7 major legal myths regarding end-of-life care are: (1) forgoing life-sustaining treatment for patients without decision-making capacity requires evidence that this was the patient's actual wish; (2) withholding or withdrawing

  15. End-of-life care: legal and ethical considerations.

    Science.gov (United States)

    O'Keefe, Mary E; Crawford, Kate

    2002-05-01

    To prepare the oncology nurse, under the Patient Self-Determination Act, to analyze and discuss legal and ethical issues that may arise in the clinical area when end-of-life decisions are made. Nursing textbooks, scholarly articles, court cases, and internet publications. The dying patient has the right to die with dignity, respect, and the right treatment choices. Nurses need to understand how to implement the Patient Self-Determination Act regarding living wills, do not resuscitate orders, euthanasia, and whether or not to use feeding tubes.

  16. Hospice nurses and genetics: implications for end-of-life care.

    Science.gov (United States)

    Metcalfe, Alison; Pumphrey, Rachel; Clifford, Collette

    2010-01-01

    The overall aim of this study is to determine hospice nurses' perception of the importance of genetics to hospice care provision and their personal level of confidence in carrying out genetics-related activities within an end-of-life care context. Hospices nurses regularly care for patients and their families affected by inherited genetic conditions (e.g. some cancers). Therefore, nurses need knowledge and awareness of the implications of genetic conditions and confidence in their abilities to provide appropriate care and support for patients and families. Survey. Questionnaires were sent to a stratified sample of hospice nurses (n = 1149) in England and Wales. Using Likert scales, nurses were asked to rate the importance of and their confidence in undertaking a range of scenario-based activities that accompany caring for a patient and family affected by a genetic condition in the hospice setting. Open questions invited comments on their experiences of nursing patient/family in similar situations. Follow-up telephone interviews were carried out with hospice nurse educators to explore emerging issues. Response rate was 29% (n = 328). Hospice nurses felt that all aspects of genetics-related care were 'very important' to hospice care, but lacked confidence in their ability to carry out the activities. Many respondents had not considered the relevance of genetics to hospice-care prior to completing the questionnaire but now considered it essential to end-of-life care even if they were not confident to provide it. Hospice nurses' need genetics education focusing on the psychosocial implications of caring for patients and families affected by genetic conditions to enable them to provide the complex care and support in face of the difficult issues that arise in practice. This study highlights the genetics education needs of hospice nurses in providing end-of life care for patients and their families affected by inherited genetic conditions.

  17. Advance care planning: between tools and relational end-of-life care?

    OpenAIRE

    Borgstrom, Erica

    2015-01-01

    The way in which end-of-life care is delivered in the UK has changed dramatically over the last few years. Owing to the changes in systems and care practice promoted in the End of Life Care Strategy more people have access to higher quality care, including advance care planning and symptom management. Drawing on the ‘best practice’ at the time, the Strategy recommended the use of several tools to facilitate identifying dying patients, communicating and planning future care, and coordinating o...

  18. Factors influencing Intensive Care Units nurses in end-of-life decisions

    Directory of Open Access Journals (Sweden)

    Michelle Freire Baliza

    2015-08-01

    Full Text Available OBJECTIVETo identify the factors that influence the Intensive Care Unit nurse in the decision-making process in end-of-life situations.METHODEthnographic case study, which used the theoretical framework of medical anthropology. Data were collected through semi-structured interviews with 10 nurses.RESULTSThe inductive thematic analysis enabled us to identify four themes:The cultural context of the Intensive Care Unit: decision-making in situations of end-of-life; Beliefs and subjectivity of care in end-of-life situations; Professional experience and context characteristics of end-of-life care situations; and Humanization practices in end-of-life situations: the patient and family centered care.CONCLUSIONProfessional maturity, the ability to transmit information and the ability to negotiate are directly related to the inclusion of nurses in the decision-making process.

  19. Five-Year Experience: Reflective Writing in a Preclinical End-of-Life Care Curriculum.

    Science.gov (United States)

    Rosenbaum, Marcy E; Ferguson, Kristi J; Broderick, Ann

    2008-01-01

    This paper examines the use of reflective writing in a preclinical end-of-life curriculum including comparison of the role and outcomes of out-of-class (OC) versus in-class (IC) writing. Learners were required to complete one-page essays on their experiences and concerns about death and dying after attending a series of end-of-life care lectures. From 2002-2005, essays were completed OC and in 2006 and 2007 essays were completed during the first ten minutes of small group discussion sessions. Essays were collected and analyzed for salient themes. Between 2002-2007, reflection essays were gathered from 829 learners, including 522 OC essays and 307 IC essays. Essay analysis identified four major themes of student concerns related to caring for dying patients, as well as student reactions to specific curricular components and to the use of reflection. IC essays were shorter and less polished than OC essays but utilized a wider variety of formats including poems and bulleted lists. IC essays tended to react to lecture content immediately preceding the writing exercise whereas OC varied in curricular components upon which they focused. OC essays have the advantage of giving learners more time to choose subject matter, whereas IC essays provide a structured time in which to actively reflect. Both formats served as catalysts for small group discussions. Writing exercises can effectively provide an important opportunity and motivation for learners to reflect on past experiences and future expectations related to providing end-of-life care.

  20. End of Life (Caring for a Dying Loved One)

    Science.gov (United States)

    ... be provided in any of these environments. Seek clarity about the type of care your loved one ... of these materials may be reprinted for noncommercial personal use only. "Mayo," "Mayo Clinic," "MayoClinic.org," "Mayo ...

  1. Palliative and end of life care in solid organ transplantation.

    Science.gov (United States)

    Wentlandt, K; Weiss, A; O'Connor, E; Kaya, E

    2017-12-01

    Palliative care is an interprofessional approach that focuses on quality of life of patients who are facing life-threatening illness. Palliative care is consistently associated with improvements in advance care planning, patient and caregiver satisfaction, quality of life, symptom burden, and lower healthcare utilization. Most transplant patients have advanced chronic disease, significant symptom burden, and mortality awaiting transplant. Transplantation introduces new risks including perioperative death, organ rejection, infection, renal insufficiency, and malignancy. Numerous publications over the last decade identify that palliative care is well-suited to support these patients and their caregivers, yet access to palliative care and research within this population are lacking. This review describes palliative care and summarizes existing research supporting palliative intervention in advanced organ failure and transplant populations. A proposed model to provide palliative care in parallel with disease-directed therapy in a transplant program has the potential to improve symptom burden, quality of life, and healthcare utilization. Further studies are needed to elucidate specific benefits of palliative care for this population. In addition, there is a tremendous need for education, specifically for clinicians, patients, and families, to improve understanding of palliative care and its benefits for patients with advanced disease. © 2017 The American Society of Transplantation and the American Society of Transplant Surgeons.

  2. Conversations in end-of-life care: communication tools for critical care practitioners.

    Science.gov (United States)

    Shannon, Sarah E; Long-Sutehall, Tracy; Coombs, Maureen

    2011-01-01

    Communication skills are the key for quality end-of-life care including in the critical care setting. While learning general, transferable communication skills, such as therapeutic listening, has been common in nursing education, learning specific communication tools, such as breaking bad news, has been the norm for medical education. Critical care nurses may also benefit from learning communication tools that are more specific to end-of-life care. We conducted a 90-min interactive workshop at a national conference for a group of 78 experienced critical care nurses where we presented three communication tools using short didactics. We utilized theatre style and paired role play simulation. The Ask-Tell-Ask, Tell Me More and Situation-Background-Assessment-Recommendation (SBAR) tools were demonstrated or practiced using a case of a family member who feels that treatment is being withdrawn prematurely for the patient. The audience actively participated in debriefing the role play to maximize learning. The final communication tool, SBAR, was practiced using an approach of pairing with another member of the audience. At the end of the session, a brief evaluation was completed by 59 nurses (80%) of the audience. These communication tools offer nurses new strategies for approaching potentially difficult and emotionally charged conversations. A case example illustrated strategies for applying these skills to clinical situations. The three tools assist critical care nurses to move beyond compassionate listening to knowing what to say. Ask-Tell-Ask reminds nurses to carefully assess concerns before imparting information. Tell Me More provides a tool for encouraging dialogue in challenging situations. Finally, SBAR can assist nurses to distill complex and often long conversations into concise and informative reports for colleagues. © 2011 The Authors. Nursing in Critical Care © 2011 British Association of Critical Care Nurses.

  3. The critical care nurse's role in end-of-life care: issues and challenges.

    Science.gov (United States)

    Efstathiou, Nikolaos; Clifford, Collette

    2011-01-01

    The purpose of this article is to discuss the challenges critical care nurses face when looking after patients needing End-of-Life (EoL) care in critical care environments. Critical care nurses frequently provide care to patients who fail to respond to treatments offered to support and prolong life. The dying phase for individuals in critical care settings, commonly after withholding/withdrawing treatment, is very short posing great demands on critical care nurses to provide physical and emotional support to both patients and their families. Despite the existence of recognized care planning frameworks that may help nurses in providing EoL care, these are not used by all units and many nurses rely on experience to inform practice. A number of aspects such as communication, patient/family-centred decision-making, continuity of care, emotional/spiritual support and support for health professionals have been indicated as contributing factors towards the provision of effective EoL care. These are considered from the perspective of critical care nursing. Skills development in key aspects of care provision may improve the provision of EoL care for critical care patients and their families. Critical care nurses have an essential role in the provision of effective EoL care; however, this dimension of their role needs further exploration. It is noted that educational opportunities need to be provided for critical care nurses to increase the knowledge on planning and delivering EoL care. To inform this evaluation of current EoL care provision in critical care is necessary to address a knowledge deficit of the needs of nurses who seek to support patients and their families at a critical time. © 2011 The Authors. Nursing in Critical Care © 2011 British Association of Critical Care Nurses.

  4. 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

  5. Do Personality Traits Moderate the Impact of Care Receipt on End-of-Life Care Planning?

    Science.gov (United States)

    Ha, Jung-Hwa; Pai, Manacy

    2012-01-01

    Purpose of the Study: This study examines (a) the association between being a care recipient and end-of-life care planning (EOLCP) and (b) the extent to which personality traits moderate the relationship between care receipt and EOLCP. Design and Methods: Data are drawn from the Wisconsin Longitudinal Study, a survey of Wisconsin high school…

  6. 'Having a different conversation around death': diverse hospital chaplains' views on end-of-life care.

    Science.gov (United States)

    Bradby, Hannah; Kenten, Charlotte; Deedat, Sarah; Morgan, Myfanwy

    2013-01-01

    Hospital chaplaincy in the UK's National Health Service (NHS) is an allied profession that is emerging from its origins as an aspect of Anglican clerical organisation. This paper describes the perceptions and practices of hospital chaplains around end of life care and organ donation. Qualitative study involving 19 semi-structured exploratory interviews with hospital chaplains in five NHS Hospital Trusts across two regions in the UK. Chaplains provided generic support for the family around death and in relation to end of life conversations. While chaplains were supportive of efforts to increase awareness of issues around deceased donation they held a range of views on organ donation and had limited knowledge of hospital processes and practices. There is scope for greater training and involvement of hospital chaplains in hospital work on organ donation, and in developing new forms of community engagement to promote awareness and debate.

  7. 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.

  8. Staff Carers' Understanding of End of Life Care

    Science.gov (United States)

    Friedman, Sandra L.; Choueiri, Roula; Gilmore, Dana

    2008-01-01

    Staff carers in pediatric skilled nursing facilities (PSNF) deal directly with dying residents, and are on the forefront of communication with families. These providers have expressed misunderstandings regarding the meaning of resuscitation status and redirection of care. This descriptive study evaluated perceptions and understanding of end of…

  9. Palliative and end-of-life care for people living with dementia in care homes: part 2.

    Science.gov (United States)

    Mitchell, Gary; Agnelli, Joanne; McGreevy, Jessie; Diamond, Monica; Roble, Herlindina; McShane, Elaine; Strain, Joanne

    2016-06-29

    This article, the second of two, provides healthcare practitioners with an overview of best practice in palliative and end-of-life care, including nutrition, hydration, oral hygiene and pain management. Communication and spiritual care are discussed, as well as care after death. Providing support and education for families is an important aspect of palliative and end-of-life care. Care home nurses should ensure that the person living with dementia is at the centre of decision making, and provide care that is inclusive of their needs and wishes. The article is framed in a care home context; there is little research about how to optimise palliative care for people living with dementia in care homes.

  10. Nurse care assesment at the end of life in intensive critical units

    Directory of Open Access Journals (Sweden)

    Mª Cristina Pascual Fernández

    2013-11-01

    Full Text Available To die nowadays is not the critical instant of our existence in occidental societies. Technological and scientific advances in health sciences have not been developed equally company and humanization in care. Nurses play an important and responsible role at end of life care, to provide patients and their families comfort cares in dying process. The main objective was to describe and analyze the professionals’ cares in Intensive Care Unit at the end of life process. An observational study was developed and 472 surveys to critical care nurses of six high complexity hospitals of Madrid Community were made. The questionnaire on the evaluation from the cares to the children that die in Pediatrics Intensive Care was applied. We have obtained that nurses said that most of the families remained with their patient in the moment of the death and needed support and empathy from the staff. As a conclusion we could say that the cares to the patients in Intensive Care Unit should be improved.

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

    Science.gov (United States)

    2014-01-01

    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. 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. 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 admissions or hospital length of stay. Team membership includes at minimum

  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. Regional Variation in Primary Care Involvement at the End of Life.

    Science.gov (United States)

    Ankuda, Claire K; Petterson, Stephen M; Wingrove, Peter; Bazemore, Andrew W

    2017-01-01

    Variation in end-of-life care in the United States is frequently driven by the health care system. We assessed the association of primary care physician involvement at the end of life with end-of-life care patterns. We analyzed 2010 Medicare Part B claims data for US hospital referral regions (HRRs). The independent variable was the ratio of primary care physicians to specialist visits in the last 6 months of life. Dependent variables included the rate of hospital deaths, hospital and intensive care use in the last 6 months of life, percentage of patients seen by more than 10 physicians, and Medicare spending in the last 2 years of life. Robust linear regression analysis was used to measure the association of primary care physician involvement at the end of life with the outcome variables, adjusting for regional characteristics. We assessed 306 HRRs, capturing 1,107,702 Medicare Part B beneficiaries with chronic disease who died. The interquartile range of the HRR ratio of primary care to specialist end-of-life visits was 0.77 to 1.21. HRRs with high vs low primary care physician involvement at the end of life had significantly different patient, population, and health system characteristics. Adjusting for these differences, HRRs with the greatest primary care physician involvement had lower Medicare spending in the last 2 years of life ($65,160 vs $69,030; P = .003) and fewer intensive care unit days in the last 6 months of life (2.90 vs 4.29; P care physician involvement in end-of-life care have overall less intensive end-of-life care. © 2017 Annals of Family Medicine, Inc.

  14. Palliative and end-of-life care in prisons: a content analysis of the literature.

    Science.gov (United States)

    Maschi, Tina; Marmo, Suzanne; Han, Junghee

    2014-01-01

    The growing numbers of terminally ill and dying in prison has high economic and moral costs as global correctional systems and the society at large. However, to date little is known about the extent to which palliative and end-of-life care is infused within global prison health care systems. The purpose of this paper is to fill a gap in the literature by reviewing and critically appraising the methods and major findings of the international peer-reviewed literature on palliative and end-of-life care in prison, identify the common elements of promising palliative and end-of-life services in prison, and what factors facilitate or create barrier to implementation. A content analysis was conducted of the existing peer-reviewed literature on palliative and end-of-life care in prison. English-language articles were located through a comprehensive search of peer-reviewed journals, such as Academic Search Premier Literature databases using differing combinations of key word search terms, "prison," "palliative care," and "end-of-life care." A total of 49 studies published between 1991 and 2013 met criteria for sample inclusion. Deductive and inductive analysis techniques were used to generate frequency counts and common themes related to the methods and major findings. The majority (n=39) of studies were published between 2001-2013 in the USA (n=40) and the UK (n=7). Most were about US prison hospice programs (n=16) or barriers to providing palliative and end of life care in prisons (n=10). The results of the inductive analysis identified common elements of promising practices, which included the use of peer volunteers, multi-disciplinary teams, staff training, and partnerships with community hospices. Obstacles identified for infusing palliative and end-of-life care in prison included ethical dilemmas based on custody vs care, mistrust between staff and prisoners, safety concerns, concern over prisoners' potential misuse of pain medication, and institutional, staff, and

  15. End-of-life care: A qualitative study comparing the views of people with dementia and family carers.

    Science.gov (United States)

    Poole, Marie; Bamford, Claire; McLellan, Emma; Lee, Richard P; Exley, Catherine; Hughes, Julian C; Harrison-Dening, Karen; Robinson, Louise

    2017-10-01

    In recent years, UK policy has increasingly recognised the importance of end-of-life care in dementia. While professional consensus on optimal palliative care in dementia has been reported, little is known about the perspectives of people with dementia and family carers. To compare the views of people with dementia and family carers of people with dementia (current and recently bereaved) on optimal end-of-life care. Qualitative interviews (32) and a focus group were conducted. Data were thematically analysed. Participants comprised people with early stage dementia, living at home in the north-east of England ( n = 11); and current and bereaved carers ( n = 25) from six services providing end-of-life care in England. Seven areas were identified as important to end-of-life care for people with dementia and/or family carers. People with dementia and carers expressed the need for receiving care in place, ensuring comfort and a skilled care team. However, they disagreed about the importance of planning for the future and the role of families in organising care and future decision-making. Further comparison of our findings with expert consensus views highlighted key areas of divergence and agreement. Discordant views concerning perceptions of dementia as a palliative condition, responsibility for future decision-making and the practical co-ordination of end-of-life care may undermine the provision of optimal palliative care. Professionals must explore and recognise the individual perspectives of people with dementia and family carers.

  16. 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

  17. Medication use during end-of-life care in a palliative care centre

    NARCIS (Netherlands)

    A.D. Masman (Anniek); M. van Dijk (Monique); D. Tibboel (Dick); F.P.M. Baar (Frans); R.A. Mathot (Ron)

    2015-01-01

    textabstractBackground In end-of-life care, symptoms of discomfort are mainly managed by drug therapy, the guidelines for which are mainly based on expert opinions. A few papers have inventoried drug prescriptions in palliative care settings, but none has reported the frequency of use in combination

  18. Family Involvement at the End-of-Life and Receipt of Quality Care

    OpenAIRE

    Sudore, RL; Casarett, D; Smith, D.; Richardson, DM; Ersek, M

    2014-01-01

    © 2014 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved. Context Most patients will lose decision-making capacity at the end of life. Little is known about the quality of care received by patients who have family involved in their care. Objectives To evaluate differences in the receipt of quality end-of-life care for patients who died with and without family involvement. Methods We retrospectively reviewed the charts of 34,290 decedents from ...

  19. End-of-life care in nursing homes: the high cost of staff turnover.

    Science.gov (United States)

    Tilden, Virginia P; Thompson, Sarah A; Gajewski, Byron J; Bott, Marjorie J

    2012-01-01

    Nursing home staff turnover results in high cost--both economic and personal--and has a negative impact on the quality of care provided to residents at the end of life. Reducing staff turnover in nursing homes would benefit both the cost to the U.S. health care system, and, most importantly, the care residents receive in the vulnerable period leading to death. There is rising pressure on nursing homes to improve their palliative and end-of-life care practices and reduce transfers to hospital for situations and conditions that can be safely managed on site. Nursing care staff deserve an investment in the specific training necessary for them to give the highest quality care to dying residents. This training should be multifaceted and include the physiological, psychological, spiritual, interpersonal, and cultural (including ethnic) aspects of dying. Empowerment with these necessary knowledge, skills, and attitudes will not only result in better care for residents but likely also will reduce the burnout and frustration staff experience in caring for residents near death.

  20. Relatives in end-of-life care--part 2: a theory for enabling safety.

    Science.gov (United States)

    Ohlén, Joakim; Andershed, Birgitta; Berg, Christina; Frid, Ingvar; Palm, Carl-Axel; Ternestedt, Britt-Marie; Segesten, Kerstin

    2007-02-01

    To develop a goal-oriented praxis theory for enabling safety for relatives when an adult or older patient is close to end-of-life. This is the second part of a project focusing on the situation and needs of relatives in end-of-life care. Our interpretation of the existing corpus of knowledge pertaining to the needs of close relatives in this situation showed the significance of relatives' need for safety. The theory was developed step-by-step, through triangulation of critical review of empirical research in the field, our own clinical experiences from end-of-life care, renewed literature searches and theoretical reasoning. The foundation for the theory is taken from the ethical intention of the philosopher Paul Ricoeur. From this, the theory focuses on relatives in the context of end-of-life care with the goal of enabling safety. This is proposed by four aphorisms functioning as safety enablers and these are directed towards the professional's approach and attitude, the relative's concern for the patient, the specific situation for the relative and the patient's end-of-life period as a period in the life of the relative. Implications for end-of-life practice are considered and include aspects for promotion of just institutions in end-of-life care, the significance of negotiated partnership in end-of-life care, enabling safety for relatives living in existential and practical uncertainty in connection with end-of-life care and diversity of relatives' preferences as they live through this particular period.

  1. Bioethics, cultural differences and the problem of moral disagreements in end-of-life care: a terror management theory.

    Science.gov (United States)

    Johnstone, Megan-Jane

    2012-04-01

    Cultural differences in end-of-life care and the moral disagreements these sometimes give rise to have been well documented. Even so, cultural considerations relevant to end-of-life care remain poorly understood, poorly guided, and poorly resourced in health care domains. Although there has been a strong emphasis in recent years on making policy commitments to patient-centred care and respecting patient choices, persons whose minority cultural worldviews do not fit with the worldviews supported by the conventional principles of western bioethics face a perpetual struggle in getting their care needs met in a meaningful, safe, and healing way. In this essay, attention is given to exploring why cultural differences exist, why they matter, and how health care providers should treat them in order to reduce the incidence and impact of otherwise preventable harmful moral outcomes in end-of-life care. In addressing these questions, a novel application of the renowned terror management theory will be made.

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

    Science.gov (United States)

    ... Care (PDQ®) Coping with Advanced Cancer Coping with Cancer Grief, Bereavement, and Coping With Loss (PDQ®) Hospice Care Last Days of Life (PDQ®) Palliative Care in Cancer When Someone You Love Has Advanced Cancer: Support ...

  3. End-of-life care in two Norwegian nursing homes: family perceptions.

    Science.gov (United States)

    Kaarbø, Elsa

    2011-04-01

    The aim of this article is to report a study exploring experiences of relatives who have been present immediately prior to and after the death (in the last 72 hours) of a next-of-kin in a nursing home. The purpose of the study was to acquire research-based knowledge to improve practice. Globally, a growing number of older people, often with increased morbidity and complexity of conditions, require specialised nursing care, particularly at the end of life. Several international studies describe end-of-life care in nursing homes as insufficient, mainly owing to shortage of qualified staff and other essential resources. There are few studies in this field in Norway; none of them focus on the final days and hours of a patient's life from the perspective of their relatives. A mixed methods design was used. Data were collected through structured interviews with 50 relatives during Spring 2006 and analysed by SPSS version 14 and theme-based analysis. With a few exceptions, the quality of nursing care was considered professional and good. Care was described as supportive, individualised and based on patients' needs - in a safe atmosphere and supported by good relations between patients and nursing staff. Information and communication between staff and relatives, however, were described as unsystematic and casual. That some patients died alone became a source of distress for their relatives. Information and communication between staff and relatives need to be improved. There is need for change to avoid the situation where patients die in solitude. End-of-life care is performed at a time when patients and their relatives are at their most vulnerable. Nurses and other health workers need information, as this study suggests, to provide high-quality care to ease this situation. © 2010 Blackwell Publishing Ltd.

  4. Exploring access to end of life care for ethnic minorities with end stage kidney disease through recruitment in action research.

    Science.gov (United States)

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

    2016-07-11

    Variation in provision of palliative care in kidney services and practitioner concerns to provide equitable access led to the development of this study which focussed on the perspectives of South Asian patients and their care providers. As people with a South Asian background experience a higher risk of Type 2 Diabetes (T2DM) and end stage kidney failure (ESKF) compared to the majority population but wait longer for a transplant, there is a need for end of life care to be accessible for this group of patients. Furthermore because non English speakers and people at end of life are often excluded from research there is a dearth of research evidence with which to inform service improvement. This paper aims to explore issues relating to the process of recruitment of patients for a research project which contribute to our understanding of access to end of life care for ethnic minority patients in the kidney setting. The study employed an action research methodology with interviews and focus groups to capture and reflect on the process of engaging with South Asian patients about end of life care. Researchers and kidney care clinicians on four NHS sites in the UK recruited South Asian patients with ESKF who were requiring end of life care to take part in individual interviews; and other clinicians who provided care to South Asian kidney patients at end of life to take part in focus groups exploring end of life care issues. In action research planning, action and evaluation are interlinked and data were analysed with emergent themes fed back to care providers through the research cycle. Reflections on the process of patient recruitment generated focus group discussions about access which were analysed thematically and reported here. Sixteen patients were recruited to interview and 45 different care providers took part in 14 focus groups across the sites. The process of recruiting patients to interview and subsequent focus group data highlighted some of the key issues

  5. Factors Affecting Family Satisfaction with Inpatient End-of-Life Care: e110860

    National Research Council Canada - National Science Library

    Erin Sadler; Brigette Hales; Blair Henry; Wei Xiong; Jeff Myers; Lesia Wynnychuk; Ru Taggar; Daren Heyland; Robert Fowler

    2014-01-01

      Background Little data exists addressing satisfaction with end-of-life care among hospitalized patients, as they and their family members are systematically excluded from routine satisfaction surveys...

  6. Getting the priorities right in end-of-life care.

    Science.gov (United States)

    Anderson, Pat

    The Leadership Alliance for the Care of Dying People has drawn up five priorities for the care of dying people. The priorities replace the Liverpool Care Pathway, which was widely criticised for promoting a tick-box approach to the care of the dying. The five priorities focus on: recognising that someone is dying; communicating sensitively with them and their family; involving them in decisions; supporting them and their family; and creating an individual plan of care that includes adequate nutrition and hydration. The alliance has outlined the duties and responsibilities of nurses and other health professionals when caring for people at the end of their lives, with an emphasis on compassionate care.

  7. CNE article: moral distress and psychological empowerment in critical care nurses caring for adults at end of life.

    Science.gov (United States)

    Browning, Annette M

    2013-03-01

    Critical care nurses providing care for adults at the end of life may encounter moral distress when they cannot do what they believe is ethically correct. Psychological empowerment can decrease moral distress among critical care nurses. To describe the relationships between moral distress, psychological empowerment, and demographics in critical care nurses caring for patients at the end of life. A total of 277 critical care nurses were surveyed via the Moral Distress Scale and the Psychological Empowerment Instrument. Responses were scored on a Likert scale of 1 to 7. Moral distress intensity was high (mean 5.34, SD 1.32) and positively correlated with age (r = 0.179, P = .01). Moral distress frequency was moderate (mean 2.51, SD 0.87) and negatively correlated with nurses' collaboration in end-of-life patient care conferences (r = -0.191, P = .007). Psychological empowerment scores (mean 5.31, SD 1.00) were high and positively correlated with age (r = 0.139, P = .03), years of experience (r = 0.165, P = .01), collaboration in end-of-life-care conferences (r = 0.163, P = .01), and end-of-life-care education (r = 0.221, P = .001) and were negatively correlated with moral distress frequency (r = -0.194, P = .01). Multiple regression analysis revealed that empowerment was a significant predictor of moral distress frequency (â = .222, P psychological empowerment and frequency of moral distress in these nurses indicated that nurses with higher perceived empowerment experience moral distress less often. This finding is of particular interest as interventions to decrease moral distress are sought.

  8. 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.

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

    OpenAIRE

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

    2017-01-01

    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 offi...

  10. Role and Involvement of Life End Information Forum Physicians in Euthanasia and Other End-of-Life Care Decisions in Flanders, Belgium

    Science.gov (United States)

    Van Wesemael, Yanna; Cohen, Joachim; Onwuteaka-Philipsen, Bregje D; Bilsen, Johan; Distelmans, Wim; Deliens, Luc

    2009-01-01

    Objective To describe role and involvement of Life End Information Forum (LEIF) physicians in end-of-life care decisions and euthanasia in Flanders. Study Design All 132 LEIF physicians in Belgium received a questionnaire inquiring about their activities in the past year, and their end-of-life care training and experience. Principal Findings Response rate was 75 percent. Most respondents followed substantive training in end-of-life care. In 1 year, LEIF physicians were contacted 612 times for consultations in end-of-life decisions, of which 355 concerned euthanasia requests eventually resulting in 221 euthanasia cases. LEIF physicians also gave information about various end-of-life issues (including palliative care) to patients and colleagues. Conclusions LEIF physicians provide a forum for information and advice for physicians and patients. A similar health service providing support to physicians for all end-of-life decisions could also be beneficial for countries without a euthanasia law. PMID:19780854

  11. [Age differences in decision-making factors on end-of-life care location for Musashino-city residents].

    Science.gov (United States)

    Ishikawa, Takako; Fukui, Sakiko; Sawai, Minako

    2014-01-01

    Japan is predicted to continue its fast-aging trend, especially in urban areas. Therefore, promoting end-of-life services in urban areas is an urgent policy issue. In addition, the recognition of end-of-life care greatly varies by age. The aim of this study was thus to clarify the association by age between preferences regarding care location among people in urban communities and their experiences, knowledge, and perceptions related to end-of-life care. A total of 1,500 people aged 40 and older in Musashino-city participated in a cross-sectional nationwide survey. We asked about preferences regarding care location, demographic data, experiences, knowledge, and perceptions related to end-of-life care. We used logistic regression analyses. A total of 769 (51.6%) responded. Of those over 65, 40.9% preferred homes and 59.1% preferred places other than homes as end-of-life care locations. For those aged 40-64, 54.1% preferred homes and 45.9% preferred places other than homes (Pthinking about the socialization of care is required to increase preferences of people over 65 for home death. For the 40-64 year old group, developing an awareness of death is required. For all generations, providing appropriate information and educating the people is required.

  12. 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.

  13. Family Member Satisfaction with End-of-Life Decision-making in the Intensive Care Unit

    Science.gov (United States)

    Gries, Cynthia J.; Curtis, J. Randall; Wall, Richard J.; Engelberg, Ruth A.

    2009-01-01

    Rationale Families of ICU patients may be at risk for increased psychological morbidity due to end-of-life decision-making. Identification of chart-based quality indicators of palliative care that predict family satisfaction with decision-making may help guide interventions to improve decision-making and family outcomes. Objective To determine patient and family characteristics and chart documentation of processes of care that are associated with increased family satisfaction with end-of-life decision-making for ICU patients. Methods We conducted a cohort study of ICU patients dying in 10 Seattle-Tacoma area medical centers. Measurement Outcomes from family surveys included summary scores for family satisfaction with decision-making and a single item score that indicated feeling supported during decision-making. Predictor variables were obtained from surveys and chart abstraction. Main Results Survey response rate was 41% (442/1074). Analyses were conducted on 356 families with questionnaire and chart abstraction data. Family satisfaction with decision-making was associated with withdrawal of life-support and chart documentation of: physician recommendations to withdraw life-support; discussions of patients’ wishes; and discussions of families’ spiritual needs. Feeling supported during decision-making was associated with withdrawal of life-support, spiritual care involvement and chart documentation of: physician recommendations to withdraw life-support; expressions of families’ wishes to withdraw life-support; and discussions of families’ spiritual needs. Conclusions Increased family satisfaction with decision-making is associated with withdrawing life-support and documentation of palliative care indicators including: physician recommendations to withdraw life-support, expressions of patients’ wishes and discussions of families’ spiritual needs. These findings provide direction for future intervention studies to improve family satisfaction in end-of-life

  14. 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

  15. Ethical decisions in end- of-life care

    African Journals Online (AJOL)

    Repro

    Patients with far-advanced disease are often vulnerable and anxious and the doctor, care team, patient and family may face difficult decisions regarding care. It is important that the doctor bases his/her practice on sound ethical principles, based on the four prima facie principles of autonomy, beneficence, non-malefi-.

  16. Developing, implementing and sustaining an end-of-life care programme in residential care homes.

    Science.gov (United States)

    Kinley, Julie; Stone, Louisa; Butt, Anna; Kenyon, Barbara; Lopes, Nuno Santos

    2017-04-02

    In the UK 15.8% of people aged 85 years and over live in a care home or long-stay hospital setting. With the projection of an ageing population it is realistic to expect that the number of people both living and dying in all care homes will increase. This article describes the implementation of an end-of-life care programme to empower staff to meet their resident's end-of-life care needs. To implement an end-of-life care programme, namely the 'Steps to Success' programme, in residential care homes. Measurable outcomes were collected through audit. Over four years audit of all deceased residents' records in the participating homes was collected. This shows an increase of home deaths in 2011/12 to 2014/15 from 44% (n=8/18) within four residential care homes to 64% (n=74/115) in 23 residential care homes with corresponding increase in advance care plan discussions and completion of 'do not attempt cardiopulmonary resuscitation' forms. Achieving change is any organisation let alone sustaining such change is not easy. Six factors enabled this to occur and these should be considered when implementing other such initiatives in residential care homes.

  17. The effect of policy on end-of-life care practice within nursing care homes: a systematic review.

    Science.gov (United States)

    Kinley, Julie; Froggatt, Katherine; Bennett, Michael I

    2013-03-01

    The number of older people in the UK is increasing. A significant proportion of end of life care for this population is currently provided and will increasingly be provided within nursing care homes. To identify the impact of implementing end of life care policy with regard to the use of the Gold Standards Framework in Care Homes programme, the Liverpool Care Pathway (or an Integrated Care Pathway) and educational/training interventions to support the provision of end of life care within nursing care homes within the UK. Systematic literature review of published literature and reports. An electronic search was undertaken of five databases-Medline, CINAHL, EMBASE, Web of Science and the Cochrane library and websites of government and palliative care organisations for papers and reports published between 2000 to June 2010. The reference lists of studies that were retrieved for the detailed evaluation were hand-searched for any additional relevant citations.. Only studies that included comparative outcome data were eligible for inclusion. Eight papers/reports, incorporating information from three studies were identified. Two studies reported on the implementation of the Gold Standards Framework in Care Homes programme and one the implementation of an Integrated Care Pathway for the last days of life. Improvements occurred in resident outcomes and in relation to staff recognising, managing and meeting residents needs for end of life care. The studies provided limited evidence on improved outcomes following the implementation of these interventions. Further research is needed, both within the UK and internationally, that measures the process and impact of implementing these initiatives.

  18. Factors considered in end-of-life care decision making by health care professionals.

    Science.gov (United States)

    Foo, Wei Ting; Zheng, Yiliang; Kwee, Ann K; Yang, Grace M; Krishna, Lalit

    2013-06-01

    To explore the importance of factors influencing the end-of-life care decision making of health care professionals (HCPs) in Singapore. This cross-sectional survey encompassed facets of patient, family, and HCP-related care considerations. In total, 187 questionnaires were distributed to physicians and nurses and had a response rate of 78.6%. The respondents rated patients' wishes (96.6%), their clinical symptoms (93.9%), and patients' beliefs (91.1%) very high. In all, 94.6% of the HCPs would respect a competent patient's wishes over the family's wishes when goals conflict. However, 59.9% of HCPs would abide by the family's wishes when the patient loses capacity even if the patient's previously expressed wishes are known. End-of-life care decision making by HCPs appears largely patient centered, although familial determination still wields significant influence with implications for advance care planning.

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

    NARCIS (Netherlands)

    Boogaard, J.A.; van Soest-Poortvliet, M.C.; Anema, J.R.; Achterberg, W.P.; Hertogh, C.M.P.M.; de Vet, H.C.W.; van der Steen, J.T.

    2013-01-01

    Background: 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. Methods/Design. Nursing homes

  20. Experiences and Expressions of Spirituality at the End of Life in the Intensive Care Unit.

    Science.gov (United States)

    Swinton, Marilyn; Giacomini, Mita; Toledo, Feli; Rose, Trudy; Hand-Breckenridge, Tracy; Boyle, Anne; Woods, Anne; Clarke, France; Shears, Melissa; Sheppard, Robert; Cook, Deborah

    2017-01-15

    The austere setting of the intensive care unit (ICU) can suppress expressions of spirituality. To describe how family members and clinicians experience and express spirituality during the dying process in a 21-bed medical-surgical ICU. Reflecting the care of 70 dying patients, we conducted 208 semistructured qualitative interviews with 76 family members and 150 clinicians participating in the Three Wishes Project. Interviews were recorded and transcribed verbatim. Data were analyzed by three investigators using qualitative interpretive description. Participants characterize dying as a spiritual event. Spirituality is an integral part of the life narrative of the patient before, during, and after death. Experiences and expressions of spirituality for patients, families, and clinicians during end-of-life care in the ICU are supported by eliciting and implementing wishes in several ways. Eliciting wishes stimulates conversations for people of diverse spiritual orientations to respond to death in personally meaningful ways that facilitate continuity and closure, and ease emotional trauma. Soliciting wishes identifies positive aspirations, which provide comfort in the face of death. The act of soliciting wishes brings clinician humanity to the fore. Wishing makes individual spiritual preferences and practices more accessible. Wishes may be grounded in spiritual goals, such as peace, comfort, connections, and tributes; they may seek a spiritually enhanced environment or represent specific spiritual interventions. Family members and clinicians consider spirituality an important dimension of end-of-life care. The Three Wishes Project invites and supports the expression of myriad forms of spirituality during the dying process in the ICU.

  1. End-of-Life Care Intensity and Hospice Use: A Regional-Level Analysis

    Science.gov (United States)

    Wang, Shi-Yi; Aldridge, Melissa D.; Gross, Cary P.; Canavan, Maureen; Cherlin, Emily; Johnson-Hurzeler, Rosemary; Bradley, Elizabeth

    2016-01-01

    Objectives Despite increased hospice use over the last decade, end-of-life care intensity continues to increase. To understand this puzzle, we sought to examine regional variation in intensive end-of-life care and determine its associations with hospice use patterns. Methods Using Medicare claims for decedents age ≥ 66 years in 2011, we assessed end-of-life care intensity in the last 6 months of life across hospital referral regions (HRRs) as measured by proportion of decedents per HRR experiencing hospitalization, emergency department (ED) use, intensive care unit (ICU) admission, and number of days spent in hospital (hospital-days) and ICU (ICU-days). Using hierarchical generalized linear models and adjusting for patient characteristics, we examined whether these measures were associated with overall hospice use, very short (≤ 7 days), medium (8–179 days), or very long (≥180 days) hospice enrollment, focusing on very short stay. Results End-of-life care intensity and hospice use patterns varied substantially across HRRs. Regional-level end-of-life care intensity was positively correlated with very short hospice enrollment. Comparing HRRs in the highest versus the lowest quintiles of intensity in end-of-life care, regions with more intensive care had higher rates of very short hospice enrollment, with adjusted odds ratios [AOR] 1.14 (99% confidence interval [CI]: 1.04–1.25) for hospitalization; 1.23 (CI: 1.12–1.36) for ED use; AOR 1.25 (CI: 1.14–1.38) for ICU admission; AOR 1.10 (CI: 1.00–1.21) for hospital-days and AOR 1.20 (CI: 1.08–1.32) for ICU-days. Conclusions At the regional level, increased end-of-life care intensity was consistently associated with very short hospice use. PMID:27111747

  2. Recommendations for improving the end-of-life care system for homeless populations: A qualitative study of the views of Canadian health and social services professionals

    Directory of Open Access Journals (Sweden)

    McNeil Ryan

    2012-09-01

    Full Text Available Abstract Background Homeless populations have complex and diverse end-of-life care needs. However, they typically die outside of the end-of-life care system. To date, few studies have explored barriers to the end-of-life care system for homeless populations. This qualitative study involving health and social services professionals from across Canada sought to identify barriers to the end-of-life care system for homeless populations and generate recommendations to improve their access to end-of-life care. Methods Semi-structured qualitative interviews were conducted with 54 health and social services professionals involved in end-of-life care services delivery to homeless persons in six Canadian cities (Halifax, Hamilton, Ottawa, Thunder Bay, Toronto and Winnipeg. Participants included health administrators, physicians, nurses, social workers, harm reduction specialists, and outreach workers. Interviews were audio-recorded, transcribed verbatim and analysed thematically. Results Participants identified key barriers to end-of-life care services for homeless persons, including: (1 insufficient availability of end-of-life care services; (2 exclusionary operating procedures; and, (3 poor continuity of care. Participants identified recommendations that they felt had the potential to minimize these barriers, including: (1 adopting low-threshold strategies (e.g. flexible behavioural policies and harm reduction strategies; (2 linking with population-specific health and social care providers (e.g. emergency shelters; and, (3 strengthening population-specific training. Conclusions Homeless persons may be underserved by the end-of-life care system as a result of barriers that they face to accessing end-of-life care services. Changes in the rules and regulations that reflect the health needs and circumstances of homeless persons and measures to improve continuity of care have the potential to increase equity in the end-of-life care system for this

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

    Science.gov (United States)

    ... preferences for resuscitation, and physician-patient communication among patients with metastatic colorectal cancer. American Journal of Medicine, 105, 222-229 . Haley, W.E., & Bailey, S. , (1999). Research on family care giving in Alzheimer’s disease: Implica- tions for practice and policy. In ...

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

    African Journals Online (AJOL)

    2008-04-01

    Apr 1, 2008 ... societal priority against the backdrop of a narcissistic impulse to omnipotence,4 has itself become a cause of suffering.5. We suggest a reconsideration of the original goal of medicine. Respect and care for the patient, and preservation of the patient's life where possible and desirable, are of the.

  5. 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.

  6. Education and Training in End-of-Life Care for Certified Nursing Assistants in Long-Term Care.

    Science.gov (United States)

    Malik, Mansura; Chapman, Wendy

    2017-02-01

    The growth in the number of older adults in the United States requires appropriately prepared health care providers at all levels who will be able to effectively care for this population. First-line caregivers such as certified nursing assistants (CNAs) need education and training in end-of-life care so they can provide high-quality care for residents and families in the long-term-care (LTC) setting. CNAs were recruited from an LTC facility in western New York to attend an educational intervention consisting of six 45-minute sessions on various topics selected by the researchers using the curriculum from the Core Curriculum for the Hospice and Palliative Nursing Assistant. Pretests and posttests were administered to assess changes in knowledge, and a satisfaction survey was used for the CNAs to identify additional learning needs. Nineteen CNAs completed the six education and training sessions. Data analysis revealed a significant increase in knowledge for the participants. CNAs were also able to identify additional learning needs. Significant improvement in knowledge was seen after the CNAs attended the educational intervention. CNAs working in LTC facilities need education and training in end-of-life care so they can provide appropriate and effective care to residents and their families. Education and training for CNAs led to increased knowledge of end-of-life care and desire for more educational opportunities. J Contin Educ Nurs. 2017;48(2):81-85. Copyright 2017, SLACK Incorporated.

  7. 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.

  8. [Care at the end of life or active euthanasia?].

    Science.gov (United States)

    Husebø, Stein; Husebø, Bettina Sandgathe

    2005-06-30

    Estimates for the next 50 years indicate that the number of European citizens above 65 will increase from today's 15 - 20 % to 30 - 40 %. In the same period the number of patients suffering from dementia wills more than double. Norway has the largest percentage of beds in nursing facilities per capita in Europe, more than twice that of most European countries. The dramatic decrease in birth rates in most European countries, with women seeking education and employment, will make proper care for the majority of the weakest elderly a major European challenge. Painful and unnecessary treatments violating basic human rights for weak elderly people suffering from dementia are widespread. The unnecessary life-prolonging medical treatment of the dying in acute wards incurs enormous costs. Options for euthanasia or palliative care are much debated poles regarding the terminally ill in Europe. If a European aim is to guarantee the frail old, that means us, dignity in their last years of life, several needs must be met. Resources now used on acute medicine must be shared with long-term care. These necessary changes will require strong medical and ethical involvement from all physicians.

  9. 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

  10. A Literature Review of Randomized Controlled Trials of the Organization of Care at the End of Life

    Science.gov (United States)

    Thomas, Roger E.; Wilson, Donna; Sheps, Sam

    2006-01-01

    We searched nine electronic databases for randomized controlled trials (RCTs) about care at the end of life and found 23 RCTs. We assessed their quality using the criteria of the Cochrane Collaboration. The RCTs researched three themes: (a) the effect of providing palliative care through dedicated community teams on quality of life, on the…

  11. End-of-life patients, intensive care and consent: difficulties facing French intensivists.

    Science.gov (United States)

    Franchitto, N; Vinour, H; Gavarri, L; Telmon, N; Rouge, D

    2007-08-01

    The French legislature passed a law in 2005 that assigns a new role to the physician and redefines his liability in end-of-life decisions. This law is presented and discussed in context with current French legal practice. This law emphasizes patient autonomy, advocating that the patient be fully informed before treatment, and creates specific procedures to be followed according to whether the patient is conscious or unconscious. In the latter situation, the law reinforces the role of both the patient's surrogate and the patient's advance directives in establishing consent. In these extreme situations, doctors have the option to request a second medical opinion. This joint decision-making procedure is laid down by law and becomes obligatory in the interests of transparency. Respect for patients' consent implies the possibility that they may refuse medical care, creating an ethical and legal dilemma of providing medical care or respecting the patients' wishes. The key issue concerning end-of-life patients rests in the decisions taken concerning the continuation or withdrawal of life support and the administration of palliative care.

  12. 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.

  13. Attaining Good End-of-Life Care in Intensive Care Units in Taiwan—The Dilemma And the Strategy

    Directory of Open Access Journals (Sweden)

    Shih-Yi Lee

    2009-03-01

    Full Text Available One of the major challenges for intensivists is resolving the conflicting interests in end-of-life care. We reviewed patients' characteristics in an intensive care unit to determine the major barriers of practicing good end-of-life care and the medical ethics involved for the care team to resolve these conflicts.

  14. End-of-life care considerations for gay, lesbian, bisexual, and transgender individuals.

    Science.gov (United States)

    Rawlings, Deb

    2012-01-01

    Negative social attitudes, discrimination, and homophobia affect gay, lesbian, bisexual, and transgender (GLBT) individuals during their lifetimes. These experiences can affect how these individuals access health services and interact with health professionals, resulting in adverse outcomes compared with their heterosexual counterparts. End-of-life experiences can also be shaped by these factors. There are implications for health professionals in terms of equity of access to targeted health care, preventive screening, and visibility in policy, as well as in principles of inclusiveness, dignity and respect, and competence in care. This article takes a brief look at some of the issues specific to the end-of-life care of GLBT individuals, using a case study as an illustrative example. Holistic care at the end of life is a familiar concept to palliative care nurses, but it is important to place greater emphasis on considering competence in aspects of care relating to sexuality.

  15. 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 personal accomplishment (t = -2.24; p 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.

  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. [End-of-life decision-making in critical care].

    Science.gov (United States)

    Trenchs Sáinz De La Maza, V; Cambra Lasaosa, F J; Palomeque Rico, A; Balcells Ramírez, J; Seriñá Ramírez, C; Hermana Tezanos Mf, M feminine T

    2002-12-01

    Introduction Termination of artificial life-support in critically-ill patients without chance of recovery or with severe damage is frequent in the intensive care unit (UCI). Patients and methodsWe studied the present situation concerning the withdrawal of life support in Spain using data collected over 10 years in referral hospitals with pediatric ICUs. Forty-nine patients were included, of which 43 had chronic diseases.ResultsThe most frequent causes of admission to the pediatric ICU in this type of patiens was respiratory failure followed by cardiovascular surgery. The family seemed to be a key element when taking a decision although in a few cases the medical team acted paternalistically. The most common ways of limiting life-support were withholding or withdrawing some treatments (mainly mechanical ventilation and vasoactive drugs) and implementing do-not-resuscitate orders. Sedation and suitable pain management were widely used in terminal care. After the decision to limit life-support was made, six patients were discharged from the pediatric ICU. ConclusionsAlthough each case should be treated individually, because of the wide variation found in the limitation of life-support, we suggest the need for common guidelines that could help the decision-making process.

  18. The drama of end of life care at home.

    Science.gov (United States)

    Newbury, Jenny

    Many terminally ill patients want to die at home. Family carers are fundamental to achieving this, but often feel anxious and unprepared for the role. Supporting them is vital in palliative care. To explore the experiences of carers of patients dying at home, in particular their expectations and preparedness for the dying process. The study followed a qualitative approach. In-depth, semi-structured interviews with 15 carers were carried out. Carers experienced uncertainty and felt unrehearsed for their role. They were reluctant to seek information to give them a script for their performance because it was too painful to contemplate the patient's death. The carers needed the direction of health and social care professionals, and the help of paid carers, but experiences of these services varied. The study highlighted the drama of the situation for carers, and the anxiety of being the leading player on stage with minimal preparation. Nurses play a crucial role in supporting carers and can use a "dramaturgical" perspective to guide them in giving carers the direction they need.

  19. Healthcare professionals' documentation in nursing homes when caring for patients with dementia in end of life - a retrospective records review.

    Science.gov (United States)

    Høgsnes, Linda; Danielson, Ella; Norbergh, Karl-Gustaf; Melin-Johansson, Christina

    2016-06-01

    To investigate how end-of-life care was described by healthcare professionals in records of deceased persons affected by dementia who had lived in Swedish nursing homes. In the final stage of dementia disease, the persons are often cared for at nursing homes and they often die there. The research concurs that a palliative approach to end-of-life care is essential but there are still some limitations regarding research about what constitutes the end-of-life care provided to persons affected by dementia in Sweden. Descriptive qualitative method with a retrospective approach. Nursing records (n = 50) and medical records (n = 50) were retrospectively reviewed in two nursing homes. The analysis was conducted using deductive and inductive content analysis. Three phases of The Liverpool Care Pathway; Initial assessment, Continuous assessment and Follow-up, were used deductively to first sort the text in the records, then the text in each phase was further analysed with inductive content analysis. Four categories and 11 subcategories described the content in the records. The end-of-life care was described in the healthcare records based on such categories as decision-making, participation and communication, assessment and prevention of symptom and following up after the residents had died. Paticularly, physical symptoms were documented and, to a lesser degree, psychological or existential/spiritual needs. Healthcare professionals must have a holistic view of the person affected by dementia during the end-of-life care and, according to this study, more focus must be placed on their psychosocial and existential needs in the documentation of end-of-life care. © 2016 John Wiley & Sons Ltd.

  20. [End of life care difficulties in intensive care units. The nurses' perspective].

    Science.gov (United States)

    Velarde-García, Juan Francisco; Luengo-González, Raquel; González-Hervías, Raquel; González-Cervantes, Sergio; Álvarez-Embarba, Beatriz; Palacios-Ceña, Domingo

    To describe the difficulties perceived by nursing staff in the delivery of end-of-life care to critically ill patients within intensive care units (ICU). A descriptive phenomenological qualitative study was performed. A purposeful and snowball sampling of nursing staff with at least 1 year's previous experience working in an ICU was conducted. Twenty-two participants were enrolled. Data collection strategies included in-depth unstructured and semi-structured interviews and researcher's field notes. Data were analysed using the Giorgi proposal. Three themes were identified: academic-cultural barriers, related to the care orientation of the ICU and lack of training in end of life care; architectural-structural barriers, related to the lack of space and privacy for the patient and family in the last moments of life; and psycho-emotional barriers, related to the use of emotional detachment as a strategy applied by nursing staff. Nursing staff need proper training on end-of-life care through the use of guidelines or protocols and the development of coping strategies, in addition to a change in the organisation of the ICU dedicated to the terminal care of critically ill patients and family support. Copyright © 2017 SESPAS. Publicado por Elsevier España, S.L.U. All rights reserved.

  1. Simple changes can improve conduct of end-of-life care in the intensive care unit.

    Science.gov (United States)

    Hall, Richard I; Rocker, Graeme M; Murray, Dawnelda

    2004-01-01

    To describe changes to the conduct of withdrawal of life support (WOLS) in two teaching hospital tertiary care medical surgical intensive care units (ICUs) in a single centre over two distinct time periods. We used a retrospective chart review with a before and after comparison. We assessed aspects of end-of-life care for ICU patients dying after a WOLS before and after we introduced instruments to clarify do not resuscitate (DNR) orders and to standardize the WOLS process, sought family input into the conduct of end-of-life care, and modified physicians' orders regarding use of analgesia and sedation. One hundred thirty-eight patients died following life support withdrawal in the ICUs between July 1996 and June 1997 (PRE) and 168 patients died after a WOLS between May 1998 and April 1999 (POST). Time from ICU admission to WOLS (mean +/- SD) was shorter in the POST period (191 +/- 260 hr PRE vs 135 +/- 205 hr POST, P = 0.05). Fewer patients in the POST group received cardiopulmonary resuscitation in the 12-hr interval prior to death (PRE = 7; POST = 0: P involvement of physicians in WOLS discussions was unchanged but increased for pastoral care (PRE: 10/138 vs POST: 120/168 cases; P end-of-life care in the ICU.

  2. 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…

  3. 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

  4. Treatment of posttraumatic stress disorder at the end-of-life: application of the Stepwise Psychosocial Palliative Care model.

    Science.gov (United States)

    Feldman, David B; Sorocco, Kristen H; Bratkovich, Kristi L

    2014-06-01

    Feldman (2011) has proposed a new approach to the treatment of posttraumatic stress disorder (PTSD) in individuals at the end-of-life known as Stepwise Psychosocial Palliative Care (SPPC). This approach helps to compensate for the disadvantages of existing PTSD interventions with regard to treating patients with life-limiting and terminal illnesses by employing a palliative care philosophy. The model relies on cognitive and behavioral techniques drawn from evidence-based approaches to PTSD, deploying them in a stage-wise manner designed to allow for interventions to track with patents' needs and prognoses. Because this model is relatively new, we seek to explore issues related to its implementation in the complex settings in which providers encounter patients at the end-of-life. We also seek to provide concrete guidance to providers regarding the management of PTSD at the end-of-life in diverse palliative care settings. We examine three specific cases in which the SPPC model was utilized, highlighting particular treatment challenges and strategies. These case studies provide information regarding the SPPC model's application to patients in two distinct palliative care settings-a palliative care consult team and an inpatient palliative care unit. The SPPC model's stage-wise approach allows for its flexible use given a variety of constraints related to setting and patient issues. The SPPC model provides an alternative to existing psychosocial treatments for PTSD that may be more appropriate for patients at the end of life.

  5. A qualitative study of oncologists' approaches to end-of-life care.

    Science.gov (United States)

    Jackson, Vicki A; Mack, Jennifer; Matsuyama, Robin; Lakoma, Mathew D; Sullivan, Amy M; Arnold, Robert M; Weeks, Jane C; Block, Susan D

    2008-07-01

    To understand how oncologists provide care at the end of life, the emotions they experience in the provision of this care, and how caring for dying patients may impact job satisfaction and burnout. A face-to-face survey and in-depth semistructured interview of 18 academic oncologists who were asked to describe the most recent inpatient death on the medical oncology service. Physicians were asked to describe the details of the patient death, their involvement with the care of the patient, the types and sequence of their emotional reactions, and their methods of coping. Grounded theory qualitative methods were utilized in the analysis of the transcripts. Physicians, who viewed their physician role as encompassing both biomedical and psychosocial aspects of care, reported a clear method of communication about end-of-life (EOL) care, and an ability to positively influence patient and family coping with and acceptance of the dying process. These physicians described communication as a process, made recommendations to the patient using an individualized approach, and viewed the provision of effective EOL care as very satisfying. In contrast, participants who described primarily a biomedical role reported a more distant relationship with the patient, a sense of failure at not being able to alter the course of the disease, and an absence of collegial support. In their descriptions of communication encounters with patients and families, these physicians did not seem to feel they could impact patients' coping with and acceptance of death and made few recommendations about EOL treatment options. Physicians' who viewed EOL care as an important role described communicating with dying patients as a process and reported increased job satisfaction. Further research is necessary to determine if educational interventions to improve physician EOL communication skills could improve physician job satisfaction and decrease burnout.

  6. The effects of advance care planning on end-of-life care: a systematic review.

    Science.gov (United States)

    Brinkman-Stoppelenburg, Arianne; Rietjens, Judith A C; van der Heide, Agnes

    2014-09-01

    Advance care planning is the process of discussing and recording patient preferences concerning goals of care for patients who may lose capacity or communication ability in the future. Advance care planning could potentially improve end-of-life care, but the methods/tools used are varied and of uncertain benefit. Outcome measures used in existing studies are highly variable. To present an overview of studies on the effects of advance care planning and gain insight in the effectiveness of different types of advance care planning. Systematic review. We systematically searched PubMed, EMBASE and PsycINFO databases for experimental and observational studies on the effects of advance care planning published in 2000-2012. The search yielded 3571 papers, of which 113 were relevant for this review. For each study, the level of evidence was graded. Most studies were observational (95%), originated from the United States (81%) and were performed in hospitals (49%) or nursing homes (32%). Do-not-resuscitate orders (39%) and written advance directives (34%) were most often studied. Advance care planning was often found to decrease life-sustaining treatment, increase use of hospice and palliative care and prevent hospitalisation. Complex advance care planning interventions seem to increase compliance with patients' end-of-life wishes. The effects of different types of advance care planning have been studied in various settings and populations using different outcome measures. There is evidence that advance care planning positively impacts the quality of end-of-life care. Complex advance care planning interventions may be more effective in meeting patients' preferences than written documents alone. More studies are needed with an experimental design, in different settings, including the community. © The Author(s) 2014.

  7. Concerns about end-of-life care and support for euthanasia.

    Science.gov (United States)

    Givens, Jane L; Mitchell, Susan L

    2009-08-01

    Popular support for euthanasia is known to vary according to sociodemographic characteristics. However, little is known about whether support is associated with concerns regarding the emotional, physical, and economic burdens of end-of-life care. This study used data from the 1998 General Social Survey, a national survey of community-dwelling adults. The outcome variable assessed the respondents' support for a doctor's right to end life in the setting of terminal illness. Independent variables assessed the following concerns: 1) concern about the emotional burden of end-of-life decision making for family members; 2) worry about the economic burden of terminal illness; 3) concern about pain at the end of life; 4) worry that lack of money or insurance will result in second-class end-of-life care; and 5) belief that their religious community will be helpful at the end of life. Multivariable logistic regression estimated the independent effect of these concerns on support for euthanasia, adjusting for sociodemographic characteristics. Of 786 respondents, 70.6% approved of euthanasia in the setting of terminal illness. In adjusted analyses, respondents with concerns about the emotional toll of decision making on family members, economic burden, and poor health care because of lack of insurance were significantly more likely to support euthanasia. Respondents with faith in the helpfulness of their religious community were less likely to support euthanasia. In conclusion, emotional and economic concerns about end-of-life care were associated with support for the right to euthanasia. Future work can evaluate whether alleviating these concerns may reduce the perceived desire for euthanasia by patients near the end of life.

  8. End-of-life care in Toronto neonatal intensive care units: challenges for physician trainees.

    Science.gov (United States)

    El Sayed, Manal F; Chan, Melissa; McAllister, Mary; Hellmann, Jonathan

    2013-11-01

    Physician trainees in neonatology can find it extremely challenging to care for patients from diverse linguistic and multicultural backgrounds. This challenge is particularly highlighted when difficult and ethically challenging end-of-life (EOL) decision-making with parents is required. While these interactions are an opportunity for growth and learning, they also have the potential to lead to misunderstanding and uncertainty and can add to trainees' insecurity, unpreparedness and stress when participating in such interactions. To explore the challenges for trainees when EOL decisions are undertaken and to encourage them to reflect on how they might influence such decision-making. An in-depth, semi-structured interview guide was developed: the interview questions address trainees' beliefs, attitudes, preferences and expectations regarding discussions of EOL neonatal care. Twelve interviews were completed and the audio records transcribed verbatim, after removal of identifying personal information. Participants identified six domains of challenge in EOL care: withdrawal of life-sustaining treatment based on poor outcome, explaining 'no resuscitation options' to parents, clarifying 'do not resuscitate (DNR)' orders, empowering families with knowledge and shared decision-making, dealing with different cultures and managing personal internal conflict. Participants experienced the most difficulty during the initial stages of training and eventually reported good knowledge of the EOL care process. They had a sense of security and confidence working within a multidisciplinary care team, which includes experienced nursing staff as well as bereavement and palliative care coordinator within the neonatal intensive care unit. The challenges experienced by physician trainees when providing EOL care can serve as focal points for improving EOL educational programmes for neonatal fellowship training.

  9. [Inadequate involvement of general practitioners in end-of-life's decisions in an intensive care unit].

    Science.gov (United States)

    Le Meur, Matthieu; Lainé, Laurent; Roucaud, Nicolas; Muller, Nelly; Paulet, Rémi; Thyrault, Martial; Coudray, Jean-Michel; Montesino, Laurent

    2014-11-01

    Patients' general practitioners (GPs) could be relevant consultants for collegial decisions of withholding or withdrawing treatment (WWT) defined by the Leonetti law. We therefore studied their implication by intensivists in end-of-life decisions and collected their feelings. Their wishes for the coming law revision were also investigated. Retrospective descriptive study conducted in the polyvalent intensive care unit (ICU) of Longjumeau's hospital (France) using a distributed questionnaire to GPs of patients who benefited from collegial decisions of WWT in 2012. The response rate was 60.4% (32/53) and only 18.8% of the respondents participated as a consultant in WWT's decision for their patient. Two GPs out of three reported that they never participate in such decisions for their others patients. All uninvolved GPs did not contribute because intensivists did not consult them. Only 43.7% of GPs were contacted by intensivists during the stay and 21.9% at the discharge or death of their patient. GPs took news about their patient during ICU hospitalization in 37.5% of cases. Regarding uninvolved GPs, their participation could have changed WWT's decisions made for two patients (7.7%). Most respondents felt available (78.1%) and skilled (81.2 %) to participate in this kind of decision. A third was also questioned by the patient's family about it. Only 21.7% of GPs report to be familiar with the French end-of-life legislation. In case of a next revision, two thirds considered important to make the use of GPs obligatory in such decisions. Despite an undeniable interest, GPs are rarely involved in collegial processes of WWT in ICUs, partially related to an insufficient knowledge of the law by the healthcare providers. At the dawn of end-of-life law's revision, their share could however improve our practices in this field. Copyright © 2014 Elsevier Masson SAS. All rights reserved.

  10. Potential for response bias in family surveys about end-of-life care in the ICU.

    Science.gov (United States)

    Kross, Erin K; Engelberg, Ruth A; Shannon, Sarah E; Curtis, J Randall

    2009-12-01

    After-death surveys are an important source of information about the quality of end-of-life care, but response rates generally are low. Our goal was to understand the potential for nonresponse bias in survey studies of family members after a patient's death in the hospital ICU by identifying differences in patient demographics and delivery of palliative care between patients whose families respond to a survey about end-of-life care and those whose families do not. We performed a cohort study of patients who died in the ICU at 14 hospitals. Surveys were mailed to family members 1 to 2 months after the patient's death. Chart abstraction was completed on all patients, assessing demographic characteristics and previously validated indicators of palliative care. Of the 2,016 surveys sent to families, 760 were returned, for a response rate of 38%. Patients whose family members returned the surveys were more likely to be white (88% vs 74%, respectively; p care, including medical record documentation of family present at death, involvement of spiritual care, and dying after a decision to limit life-sustaining therapies (p family members responded to a survey about end-of-life care were more likely to be white, older, and have indicators of palliative care documented in the medical record. Because these patients likely received higher quality palliative care, these findings suggest that the response bias in end-of-life care research is toward overestimating the quality of palliative care. ClinicalTrials.gov Identifier: NCT00685893.

  11. 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.

  12. Advance Care Planning and the Quality of End-of-Life Care among Older Adults

    Science.gov (United States)

    Bischoff, Kara E.; Sudore, Rebecca; Miao, Yinghui; Boscardin, W. John; Smith, Alexander K.

    2013-01-01

    Background Advance care planning is increasingly common, but whether it influences end-of-life quality of care remains controversial. Design Medicare data and survey data from the Health and Retirement Study were combined to determine whether advance care planning was associated with quality metrics. Setting The nationally representative Health and Retirement Study. Participants 4394 decedent subjects (mean age 82.6 years at death, 55% women). Measurements Advance care planning was defined as having an advance directive, durable power of attorney or having discussed preferences for end-of-life care with a next-of-kin. Outcomes included previously reported quality metrics observed during the last month of life (rates of hospital admission, in-hospital death, >14 days in the hospital, intensive care unit admission, >1 emergency department visit, hospice admission, and length of hospice ≤3 days). Results Seventy-six percent of subjects engaged in advance care planning. Ninety-two percent of advance directives stated a preference to prioritize comfort. After adjustment, subjects who engaged in advance care planning were less likely to die in a hospital (adjusted RR 0.87, 95% CI 0.80-0.94), more likely to be enrolled in hospice (aRR 1.68, 1.43-1.97), and less likely to receive hospice for ≤3 days before death (aRR 0.88, 0.85-0.91). Having an advance directive, a durable-power-of-attorney or an advance care planning discussion were each independently associated with a significant increase in hospice use (pplanning was associated with improved quality of care at the end of life, including less in-hospital death and increased use of hospice. Having an advance directive, assigning a durable power of attorney and conducting advance care planning discussions are all important elements of advance care planning. PMID:23350921

  13. Medical education about end-of-life care in the pediatric setting: principles, challenges, and opportunities.

    Science.gov (United States)

    Sahler, O J; Frager, G; Levetown, M; Cohn, F G; Lipson, M A

    2000-03-01

    To identify the opportunities for and barriers to medical education about end-of-life (EOL) care in the pediatric setting. A working group of pediatric specialists and ethicists was convened at the National Consensus Conference on Medical Education for Care Near the End-of-Life sponsored by the Open Society Institute's Project Death in America and the Robert Wood Johnson Foundation. The charge to the working group was to consider the unique aspects of death in childhood, identify critical educational issues and effective instructional strategies, and recommend institutional changes needed to facilitate teaching about EOL care for children. Although providing EOL care can be challenging, the cognitive and psychologic skills needed can be taught effectively through well-planned and focused learning experiences. The ultimate goals of such instruction are to provide more humane care to very sick children, enhance bereavement outcomes for their survivors, and develop more confident clinicians. Six specific principles regarding EOL care in the pediatric setting emerged as essential curricular elements that should be taught to all medical care providers to ensure competent patient-centered care. 1) Cognitively and developmentally appropriate communication is most effective. 2) Sharing information with patients helps avoid feelings of isolation and abandonment. 3) The needs of the patient are served when the ethical principles of self-determination and best interests are central to the decision-making process. 4) Minimization of physical and emotional pain and other symptoms requires prompt recognition, careful assessment, and comprehensive treatment. 5) Developing partnerships with families supports them in their caregiving efforts. 6) The personal and professional challenges faced by providers of EOL care deserve to be addressed. These principles actually transcend patient age and can be used to inform medical education about the care of any terminally ill patient

  14. CE: Original Research: End-of-Life Care Behind Bars: A Systematic Review.

    Science.gov (United States)

    Wion, Rachel K; Loeb, Susan J

    2016-03-01

    : To conduct a systematic review of the published research literature on end-of-life (EOL) care in prisons in order to determine the current state of the science and suggest implications for nursing practice and areas for future research.Applying the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines, we performed a comprehensive search of the literature using the following databases: CINAHL, Criminal Justice Abstracts, the National Criminal Justice Reference Service, PsycINFO, PubMed, and Sociological Abstracts. All databases were searched from the time of their inception through June 2014. All English-language articles that reported on original quantitative and qualitative research involving EOL or palliative care delivered to prisoners were included. We abstracted data, using the matrix method, and independently reviewed and graded the evidence on its level of strength and quality in accordance with the Johns Hopkins Nursing Evidence-Based Practice rating scales.Nineteen articles, all published between 2002 and 2014, met the inclusion criteria. Of these, 53% were published between 2009 and 2014, and 58% reported findings from qualitative research. One article reported on research conducted in the United Kingdom; the remaining 18 reported on research conducted in the United States. Capacity (that is, the number of prisoners requiring EOL care and the ability of the prison to accommodate them) and the site of EOL care delivery varied across studies, as did the criteria for admission to EOL or hospice services. Care was provided by prison health care staff, which variously included numerous professional disciplines, corrections officers, and inmate caregivers. The inmate caregivers, in particular, provided a wide array of services and were viewed positively by both EOL patients and health care staff. There are insufficient data to characterize the patients' and inmate caregivers' perceptions of the EOL care staff and the quality

  15. Public, patient and carers' views on palliative and end-of-life care in India.

    Science.gov (United States)

    Ramasamy Venkatasalu, M; Sirala Jagadeesh, N; Elavally, S; Pappas, Y; Mhlanga, F; Pallipalayam Varatharajan, R

    2017-08-30

    To systematically review the existing evidence on the Indian public, patient and carers' perspectives on palliative and end-of-life care. With a growing population of terminally ill people across the world, there is also an increasing awareness among international health policy makers of the need to improve the quality of life for terminally ill patients. Understanding service users' (patients, family and public) perspectives is crucial in developing and sustaining successful community-centred palliative nursing policies and service models especially in countries like India with diverse population. An integrative review was performed on five databases, using hand searches of key journals and reference citation tracking for empirical studies published in English from 1990 to 2015. A thematic analysis framework was used to analyse and identify key themes. Analysis of the six eligible studies revealed five themes. Themes describe how social, economic, cultural, religious, spiritual and traditional factors influenced the palliative and end-of-life care perspectives and experiences among Indians. They also illustrated preferences relating to place of care, as well as benefits and challenges of family caregiving during the last days of life. Although we found minimal evidence on user perspectives, nurses need to aware of those unique components of context-specific palliative and end-of-life care practices in India - socioeconomic, cultural and religious factors - on their nursing encounters. Nurses need to advocate same in policy development to enable accessibility and utility of palliative and end-of-life care services, which are scant in India. Nurses can be central in gathering the contextual evidence that advocate users' perspectives to inform further studies and national palliative care policies in India. Emerging policies in nursing education need to focus on integrating family-centred palliative and end-of-life care within curricula, whereas nursing practice may

  16. 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: ...

  17. Palliative and end of life care for people with dementia: lessons for clinical commissioners.

    Science.gov (United States)

    Raymond, Mareeni; Warner, Alex; Davies, Nathan; Nicholas, Nirusha; Manthorpe, Jill; Iliffe, Steve

    2014-10-01

    To synthesize information about management of end of life care in people with dementia using review papers. There are increasing numbers of people being diagnosed with dementia worldwide, and the needs of people with dementia and their carers at the end of life may be different from those with other chronic diseases. By highlighting the challenges of palliative care in persons with dementia and the ways they are best managed, practitioners in primary care may be able to improve services for this group of people at the end of life. A search of electronic databases of English language papers published in peer-reviewed journals, 2000-2011 inclusive was undertaken using broad terms related to palliative care and dementia. 6167 papers were identified. Titles and abstracts were read. Papers were included if they were literature reviews of palliative or end of life care for people with dementia/Parkinson's disease/Lewy body dementia/cognitive impairment/Alzheimer's disease or any other cognitive impairment, in any setting (hospital, care home, community) and covering people of all ages. Papers were excluded if they covered palliative care focusing on other conditions, or were about an aspect of dementia care and treatment not related to palliative care. Our critical synthesis generated five main themes from this review of the reviews: (1) carers' (family caregivers') experiences; (2) person-centred care; (3) practice (including advance care planning, pain and comfort, nutrition, medical complications and minimizing the distress of behavioural symptoms); (4) system factors, including ethical dilemmas, decision making, information, and training; and (5) research priorities. There appears to be good evidence on the care and management of patients with dementia at the end of life which can be used to influence policy development and emerging specificity about research priorities in palliative care practice for people with dementia.

  18. IAGG/IAGG GARN International Survey of End-of-Life Care in Nursing Homes

    NARCIS (Netherlands)

    Wallace, C.L.; Swagerty, D.; Barbagallo, M.; Vellas, B.; Cha, H.B.; Holmerova, I.; Dong, B.; Koopmans, R.T.; Cruz-Jentoft, A.J.; Gutierrez Robledo, L.M.; Moreno, J.C.; Hajjar, R.; Woo, J.; Arai, H.; Okochi, J.; Visvanathan, R.; Abdul-Rahman, S.A.; Goel, A.; Moser, A.; Rolland, Y.; Abbatecola, A.M.; Russo, M.; Morley, J.E.

    2017-01-01

    This article reports the findings of a survey on end-of-life (EOL) care in nursing homes of 18 long-term care experts across 15 countries. The experts were chosen as a convenience-based sample of known experts in each country. The survey was administered in 2016 and included both open-ended

  19. 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

  20. Problems and training needs in end of life care for people with intellectual disabilities.

    NARCIS (Netherlands)

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

    2012-01-01

    Aims: In a previous Dutch study it was found that professionals caring for people with intellectual disabilities were experiencing deficits in their knowledge and skills regarding end- of-life care. The aim of this study was to identify changes between 2005 and 2011 in professionals’ views on the

  1. 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…

  2. End-of-life care for Hispanic children: A study of California Medicaid beneficiaries

    Science.gov (United States)

    Lindley, Lisa C.; Trujillo, Laura V.

    2016-01-01

    Introduction Over 8,000 Hispanic children die annually in the United States; yet, little is known about the end-of-life care utilized. The purpose of this study was to examine the children and family characteristics associated with end-of-life care for Hispanic children. Methods A sample of 370 Hispanic children was created, using the 2009-2010 California Medicaid data. The relationship between child and family characteristics and end-of-life care utilization (i.e., hospice enrollment, emergency room utilization, hospital admissions) was analyzed using multivariate regression. Results Pediatric hospice accessibility ( p< 0.05), palliative care policy (p <0.01), congenital anomalies (p <0.01), and cardiovascular conditions (p <0.01) were related to hospice enrollment. Usual source of care (p <0.001), functional status (p <0.001), palliative care policy (p <0.01), and private insurance (p <0.01) were associated with emergency room utilization; while usual source of care (p <0.001), cancer (p <0.001), and disability status (p <0.01) corresponded with hospital admissions. Conclusion Nursing practices aimed at engaging Hispanic families in their community are critical to end-of-life care utilization for Hispanic children. PMID:27650201

  3. End of life care for terminally ill-patients in North West of Iran

    Directory of Open Access Journals (Sweden)

    Hossein Jabbari

    2014-11-01

    Full Text Available Introduction: Nowadays chronic disease and number of elderly population climb in low and middle-income countries and need for high-quality hospice care services for them. The aim of this study was to review the experience of hospitalized end of life (EOL patients and their family’s regarding hospice care. Methods: In this qualitative study with the phenomenological approach, 20 patients and their families were chosen using purposive sampling to achieve data saturation from the Tabriz University of Medical Sciences Hospitals, Iran. The required data were collected using in deep semi-structured interviews and analyzed using Diekelmann method. Results: Patients and their family’s experiences included 7 main themes: lack of special education for healthcare providers, preferences, financial problems, health care quality, lack of providing information to patients and their families, limitation in life due to disease, burdens to EOL care for family. Conclusion: Due to the lack of experience in hospice care in Iran, patients, families and health care provider not have adequate knowledge about hospice. The cost of this service is high, and qualities of these services are low. Furthermore provide educational courses for patients, families and health care provider and decrease of cost and improve of quality are necessary.

  4. Impact of Oncologists' Attitudes Toward End-of-Life Care on Patients' Access to Palliative Care.

    Science.gov (United States)

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

    2016-09-01

    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. 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. 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 palliative care (score 0-4, 27%; 5, 31%; 6, 32%; 7, 35%; and 8, 45%; p = .007). Greater comfort with 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. 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

  5. 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 palliative care (score 0–4, 27%; 5, 31%; 6, 32%; 7, 35%; and 8, 45%; p = .007). Conclusion. Greater comfort with 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

  6. An appraisal of end-of-life care in persons with chronic kidney disease dying in hospital wards.

    Science.gov (United States)

    Noble, Helen; Brown, Joan; Shields, Joanne; Fogarty, Damian; Maxwell, Alexander P

    2015-03-01

    To review end-of-life care provided by renal healthcare professionals to hospital in-patients with chronic kidney disease, and their carers, over a 12-month period in Northern Ireland. Retrospective review of 100 patients. Mean age at death was 72 years (19-95) and 56% were male. Eighty three percent of patients had a 'Not For Attempted Resuscitation' order during their last admission and this was implemented in 42%. Less than 20% of all patients died in a hospital ward. No patients had an advanced care plan, although 42% had commenced the Liverpool Care Pathway for the Dying Patient. Patients suffered excessive end-of-life symptoms. In addition, there was limited documentation of carer involvement and carer needs were not formally assessed. End-of-life care for patients with advanced chronic renal disease can be enhanced. There is significant variation in the recording of discussions regarding impending death and little preparation. There is poor recording of the patients' wishes regarding death. Those with declining functional status, including those frequently admitted to hospital require holistic assessment regarding end-of-life needs. More effective communication between the patient, family and multi-professional team is required for patients who are dying and those caring for them. © 2014 European Dialysis and Transplant Nurses Association/European Renal Care Association.

  7. 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.

  8. 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.

  9. Family Perspectives on Aggressive Cancer Care Near the End of Life.

    Science.gov (United States)

    Wright, Alexi A; Keating, Nancy L; Ayanian, John Z; Chrischilles, Elizabeth A; Kahn, Katherine L; Ritchie, Christine S; Weeks, Jane C; Earle, Craig C; Landrum, Mary B

    2016-01-19

    Patients with advanced-stage cancer are receiving increasingly aggressive medical care near death, despite growing concerns that this reflects poor-quality care. To assess the association of aggressive end-of-life care with bereaved family members' perceptions of the quality of end-of-life care and patients' goal attainment. Interviews with 1146 family members of Medicare patients with advanced-stage lung or colorectal cancer in the Cancer Care Outcomes Research and Surveillance study (a multiregional, prospective, observational study) who died by the end of 2011 (median, 144.5 days after death; interquartile range, 85.0-551.0 days). Claims-based quality measures of aggressive end-of-life care (ie, intensive care unit [ICU] admission or repeated hospitalizations or emergency department visits during the last month of life; chemotherapy ≤2 weeks of death; no hospice or ≤3 days of hospice services; and deaths occurring in the hospital). Family member-reported quality rating of "excellent" for end-of-life care. Secondary outcomes included patients' goal attainment (ie, end-of-life care congruent with patients' wishes and location of death occurred in preferred place). Of 1146 patients with cancer (median age, 76.0 years [interquartile range, 65.0-87.0 years]; 55.8% male), bereaved family members reported excellent end-of-life care for 51.3%. Family members reported excellent end-of-life care more often for patients who received hospice care for longer than 3 days (58.8% [352/599]) than those who did not receive hospice care or received 3 or fewer days (43.1% [236/547]) (adjusted difference, 16.5 percentage points [95% CI, 10.7 to 22.4 percentage points]). In contrast, family members of patients admitted to an ICU within 30 days of death reported excellent end-of-life care less often (45.0% [68/151]) than those who were not admitted to an ICU within 30 days of death (52.3% [520/995]) (adjusted difference, -9.4 percentage points [95% CI, -18.2 to -0.6 percentage

  10. End-of-Life Care in Nursing Homes: From Care Processes to Quality.

    Science.gov (United States)

    Temkin-Greener, Helena; Li, Qinghua; Li, Yue; Segelman, Micah; Mukamel, Dana B

    2016-12-01

    Nursing homes (NHs) are an important setting for the provision of palliative and end-of-life (EOL) care. Excessive reliance on hospitalizations at EOL and infrequent enrollment in hospice are key quality concerns in this setting. We examined the association between communication-among NH providers and between providers and residents/family members-and two EOL quality measures (QMs): in-hospital deaths and hospice use. We developed two measures of communication by using a survey tool implemented in a random sample of U.S. NHs in 2011-12. Using secondary data (Minimum Data Set, Medicare, and hospice claims), we developed two risk-adjusted quality metrics for in-hospital death and hospice use. In the 1201 NHs, which completed the survey, we identified 54,526 residents, age 65+, who died in 2011. Psychometric assessment of the two communication measures included principal factor and internal consistency reliability analyses. Random-effect logistic and weighted least-square regression models were estimated to develop facility-level risk-adjusted QMs, and to assess the effect of communication measures on the quality metrics. Better communication with residents/family members was statistically significantly (p = 0.015) associated with fewer in-hospital deaths. However, better communication among providers was significantly (p = 0.006) associated with lower use of hospice. Investing in NHs to improve communication between providers and residents/family may lead to fewer in-hospital deaths. Improved communication between providers appears to reduce, rather than increase, NH-to-hospice referrals. The actual impact of improved provider communication on residents' EOL care quality needs to be better understood.

  11. End-of-life care in intensive care unit: Family experiences.

    Science.gov (United States)

    Kisorio, Leah C; Langley, Gayle C

    2016-08-01

    To elicit family members' experiences of end-of-life care in adult intensive care units. A descriptive, exploratory, qualitative design was utilised. A purposive sampling method was used to select a sample of seventeen family members who had relatives receiving end-of-life care in the intensive care units at three academic affiliated, tertiary/quaternary specialist hospitals in the Johannesburg and Pretoria regions, South Africa. An interview guide was used to facilitate individual, semi-structured interviews with the selected participants. Data collection and analysis took place simultaneously as interviews were transcribed verbatim immediately after the interview. Tesch's (1990) steps of analysis were used to establish the major themes that arose from the data. Lincoln and Guba's (1985) criteria for ensuring trustworthiness of qualitative research were applied. Five major themes emerged: "most of the time we are in darkness", "emotional support", "involvement", "family presence" and "spiritual support". The findings reflect inadequate care to the families who had dying relatives in the intensive care unit. Negative experiences expressed by the families outweighed their positive experiences, as most families were not happy with the care observed or personally received while their relatives were in the intensive care unit. Copyright © 2016 Elsevier Ltd. All rights reserved.

  12. Improving end-of-life care in nursing homes: implementation and evaluation of an intervention to sustain quality of care.

    Science.gov (United States)

    Finucane, Anne M; Stevenson, Barbara; Moyes, Rhona; Oxenham, David; Murray, Scott A

    2013-09-01

    Internationally, policy calls for care homes to provide reliably good end-of-life care. We undertook a 20-month project to sustain palliative care improvements achieved by a previous intervention. To sustain a high standard of palliative care in seven UK nursing care homes using a lower level of support than employed during the original project and to evaluate the effectiveness of this intervention. Two palliative care nurse specialists each spent one day per week providing support and training to seven care homes in Scotland, United Kingdom; after death audit data were collected each month and analysed. During the sustainability project, 132 residents died. In comparison with the initial intervention, there were increases in (a) the proportion of deceased residents with an anticipatory care plan in place (b) the proportion of those with Do Not Attempt Cardiopulmonary Resuscitation documentation in place and (c) the proportion of those who were on the Liverpool Care Pathway when they died. Furthermore, there was a reduction in inappropriate hospital deaths of frail and elderly residents with dementia. However, overall hospital deaths increased. A lower level of nursing support managed to sustain and build on the initial outcomes. However, despite increased adoption of key end-of-life care tools, hospital deaths were higher during the sustainability project. While good support from palliative care nurse specialists and GPs can help ensure that key processes remain in place, stable management and key champions are vital to ensure that a palliative care approach becomes embedded within the culture of the care home.

  13. Palliative Care Consultations in Nursing Homes and End-of-Life Hospitalizations.

    Science.gov (United States)

    Miller, Susan C; Dahal, Roshani; Lima, Julie C; Intrator, Orna; Martin, Edward; Bull, Janet; Hanson, Laura C

    2016-12-01

    Although specialty palliative care in hospital and outpatient settings is associated with lower acute care use, its impact in U.S. nursing homes (NHs) is unknown. To understand how NH use of palliative care consults is associated with end-of-life hospitalizations. Seven consult providers in four states and 24 counties shared data on the number of consult visits and residents served (per NH) in study years 2000-2010. All NHs in the 24 counties were studied (n = 286). An NH-level longitudinal file included consult data, aggregated Medicare resident assessment and claims data, and NH characteristics. Consult introduction was "yes" when 1% of residents received consults. Volume was the number of consult visits per 100 residents, annually. Panel multivariate regression with NH fixed effects examined whether rates of hospital deaths and hospitalizations in the last 30 days of life differentially changed for NHs introducing consults, or increasing consult volume. One hundred seventy (59%) of the 286 NHs introduced consults by 2010. NHs with consults, compared to others, had residents with higher acuity and functional impairment, and lower nurse but higher nursing assistant staffing. Controlling for covariate differences and compared to NHs without consults, NHs introducing consults had a 1% (95% CI -0.021, 0.002) greater reduction in hospital death rates and a 1.6% (95% CI -0.031, -0.002) greater reduction in hospitalizations in the last 30 days of life. No statistically significant associations between volume and study outcomes were observed. The introduction of specialty palliative care consults in NHs is associated with overall reductions in end-of-life hospitalizations. Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  14. [Palliative care: between humanization and medicalization at the end of life].

    Science.gov (United States)

    Alonso, Juan Pedro

    2013-09-01

    This paper analyzes the palliative care of terminal patients, examining the tensions between the humanization of care and the progressive medicalization at the end-of-life situation. The research upon which the article is based adopts a qualitative methodological approach derived from interviews with professionals and patients and ethnographic observations in a palliative care unit in the City of Buenos Aires, Argentina. The article describes the configuration of personalized and comprehensive health care based on the core values of more humanized end-of-life care promoted by palliative care supporters. Similarly, the paper analyzes how these practices are assisted by progress in the medicalization process in which the dimension of care is considered less an unprofessional area of medical practice than an area of care in which specific technical skills and know-how are employed. The articles explores how instead of being divergent, the logic of care and medicalization work in a complementary fashion.

  15. Awareness of palliative care and end-of-life options among African Canadians in Nova Scotia.

    Science.gov (United States)

    Maddalena, Victor; Bernard, Wanda Thomas; Davis-Murdoch, Sharon; Smith, Donna

    2013-04-01

    To assess, using qualitative methods, the knowledge African Canadians living in Nova Scotia have regarding their options for palliative and end-of-life (EOL) care. This project engaged caregivers in a Black community in Nova Scotia, Canada, in an exploration of palliative and EOL care. A group of six caregivers who cared for someone who had died were recruited through purposive sampling. The caregivers met three times to (1) discuss their experiences, (2) receive a presentation from the palliative care service, and (3) discuss whether those services would be beneficial. This was followed by a community meeting to discuss the findings. Knowledge of options for palliative care services is limited. Family centered care may be a reason why "system" is generally not aware of the EOL experiences of African Nova Scotians. Information about palliative care services is not filtering down to the community in a way that is meaningful to families. Families tend to self-select services that assist them in providing care in the home setting. There is a need to engage Black communities and palliative care services in developing culturally appropriate services.

  16. Community end-of-life care among Chinese older adults living in nursing homes.

    Science.gov (United States)

    Chu, Leung-Wing; So, Jason C; Wong, Lai-Chin; Luk, James K H; Chiu, Patrick K C; Chan, Cherry S Y; Kwan, Fiona S M; Chau, June; Hui, Elsie; Woo, Jean; McGhee, Sarah M

    2014-04-01

    The aim of the present study was to investigate the preference and willingness-to-pay (WTP) of older Chinese adults for community end-of-life care in a nursing home rather than a hospital. A total of 1540 older Chinese adults from 140 nursing homes were interviewed. Four hypothetical questions were asked to explore their preferences for end-of-life care. Using a discrete choice approach, specific questions explored acceptable trade-offs between three attributes: availability of doctors onsite, attitude of the care staff and additional cost of care per month. Approximately 35% of respondents preferred end-of-life care in the nursing home, whereas 23% of them would consider it in a better nursing home. A good attitude of staff was the most important attribute of the care site. Respondents were willing to pay an extra cost of US$5 (HK$39) per month for more coverage of doctor's time, and US$49 (HK$379) for a better attitude of staff in the nursing home. The marginal WTP for both more coverage of doctor's time and better attitude of staff amounted to US$54 (HK$418). Respondents on government subsidy valued the cost attribute more highly, as expected, validating the hypothesis that those respondents would be less willing to pay an additional cost for end-of-life care. Older Chinese adults living in nursing homes are willing to pay an additional fee for community end-of-life care services in nursing homes. Both the availability of the doctor and attitudes of nursing home staff are important, with the most important attribute being the staff attitudes. Geriatr Gerontol Int 2013; 14: 273-284. © 2013 Japan Geriatrics Society.

  17. 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

  18. Clinician Perspectives on Challenges to Patient Centered Care at the End of Life.

    Science.gov (United States)

    Bardach, Shoshana H; Dunn, Edward J; Stein, J Christopher

    2017-04-01

    Discussions regarding patient preferences for resuscitation are often delayed and preferences may be neglected, leading to the receipt of unwanted medical care. To better understand barriers to the expression and realization of patients' end of life wishes, a preventive ethics team in one Veterans Affairs Medical Center conducted a survey of physicians, nurses, social workers, and respiratory therapists. Surveys were analyzed through qualitative analysis, using sorting methodologies to identify themes. Analysis revealed barriers to patient wishes being identified and followed, including discomfort conducting end-of-life discussions, difficulty locating patients' preferences in medical records, challenges with expiring do not resuscitate (DNR) orders, and confusion over terminology. Based on these findings, the preventive ethics team proposed new terminology for code status preferences, elimination of the local policy for expiration of DNR orders, and enhanced systems for storing and retrieving patients' end-of-life preferences. Educational efforts were initiated to facilitate implementation of the proposed changes.

  19. 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.

  20. Concepts and definitions for "actively dying," "end of life," "terminally ill," "terminal care," and "transition of care": a systematic review.

    Science.gov (United States)

    Hui, David; Nooruddin, Zohra; Didwaniya, Neha; Dev, Rony; De La Cruz, Maxine; Kim, Sun Hyun; Kwon, Jung Hye; Hutchins, Ronald; Liem, Christiana; Bruera, Eduardo

    2014-01-01

    The terms "actively dying," "end of life," "terminally ill," "terminal care," and "transition of care" are commonly used but rarely and inconsistently defined. We conducted a systematic review to examine the concepts and definitions for these terms. We searched MEDLINE, PsycINFO, Embase, and CINAHL for published peer-reviewed articles from 1948 to 2012 that conceptualized, defined, or examined these terms. Two researchers independently reviewed each citation for inclusion and then extracted the concepts/definitions when available. We also searched 10 dictionaries, four palliative care textbooks, and 13 organization Web sites, including the U.S. Federal Code. One of 16, three of 134, three of 44, two of 93, and four of 17 articles defined or conceptualized actively dying, end of life, terminally ill, terminal care, and transition of care, respectively. Actively dying was defined as "hours or days of survival." We identified two key defining features for end of life, terminally ill, and terminal care: life-limiting disease with irreversible decline and expected survival in terms of months or less. Transition of care was discussed in relation to changes in 1) place of care (e.g., hospital to home), 2) level of professions providing the care (e.g., acute care to hospice), and 3) goals of care (e.g., curative to palliative). Definitions for these five terms were rarely found in dictionaries, textbooks, and organizational Web sites. However, when available, the definitions were generally consistent with the concepts discussed previously. We identified unifying concepts for five commonly used terms in palliative care and developed a preliminary conceptual framework toward building standardized definitions. Copyright © 2014 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

  1. The Social Stratification of Older Adults' Preparations for End-of-Life Health Care

    Science.gov (United States)

    Carr, Deborah

    2012-01-01

    I use data from the Wisconsin Longitudinal Study (n = 4,971) to evaluate the extent to which socioeconomic status affects three health-related (living will, durable power of attorney for health care, and discussions) and one financial (will) component of end-of-life planning. Net worth is positively associated with all four types of planning,…

  2. [Support at the end of life in care homes by nursing assistants].

    Science.gov (United States)

    Croyère, Nicole

    2015-11-01

    In nursing homes, the nursing assistant supports patients at the end of life, notably as they move into palliative care. This involves team work to relieve pain, limit treatments considered disproportionate and improve comfort. Relations with the residents and their families are particularly important in this context. Copyright © 2015 Elsevier Masson SAS. All rights reserved.

  3. 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…

  4. Family Perspectives on End-of-Life Care Experiences in Nursing Homes

    Science.gov (United States)

    Wetle, Terrie; Shield, Renee; Teno, Joan; Miller, Susan C.; Welch, Lisa

    2005-01-01

    Purpose: The purpose of this study is to expand knowledge regarding end-of-life care received in nursing homes through the use of narrative interviews with family members close to the decedents. Design and Methods: We conducted follow-up qualitative interviews with 54 respondents who had participated in an earlier national survey of 1,578…

  5. [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.

  6. 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

  7. Measuring Experience With End-of-Life Care: A Systematic Literature Review

    National Research Council Canada - National Science Library

    Lendon, Jessica Penn; Ahluwalia, Sangeeta C; Walling, Anne M; Lorenz, Karl A; Oluwatola, Oluwatobi A; Anhang Price, Rebecca; Quigley, Denise; Teno, Joan M

    2015-01-01

    .... We conducted a systematic review of PubMed, PsycINFO, and PsycTESTS(®) for all English-language articles published after 1990 using instruments to measure adult patient, family, or informal caregiver experiences with end-of-life care...

  8. Medication use during end-of-life care in a palliative care centre.

    Science.gov (United States)

    Masman, Anniek D; van Dijk, Monique; Tibboel, Dick; Baar, Frans P M; Mathôt, Ron A A

    2015-10-01

    In end-of-life care, symptoms of discomfort are mainly managed by drug therapy, the guidelines for which are mainly based on expert opinions. A few papers have inventoried drug prescriptions in palliative care settings, but none has reported the frequency of use in combination with doses and route of administration. To describe doses and routes of administration of the most frequently used drugs at admission and at day of death. Setting Palliative care centre in the Netherlands. In this retrospective cohort study, prescription data of deceased patients were extracted from the electronic medical records. Doses, frequency and route of administration of prescribed drugs All regular medication prescriptions of 208 patients, 89% of whom had advanced cancer, were reviewed. The three most prescribed drugs were morphine, midazolam and haloperidol, to 21, 11 and 23% of patients at admission, respectively. At the day of death these percentages had increased to 87, 58 and 50%, respectively. Doses of these three drugs at the day of death were statistically significantly higher than at admission. The oral route of administration was used in 89% of patients at admission versus subcutaneous in 94% at the day of death. Nearing the end of life, patients in this palliative care centre receive discomfort-relieving drugs mainly via the subcutaneous route. However, most of these drugs are unlicensed for this specific application and guidelines are based on low level of evidence. Thus, there is every reason for more clinical research on drug use in palliative care.

  9. Using the Gold Standards Framework to deliver good end of life care.

    Science.gov (United States)

    Quinn, Barry; Thomas, Keri

    2017-02-27

    The aims of excellent end of life care (EOLC) and nursing are at the heart of healthcare. Chelsea and Westminster Hospital NHS Foundation Trust, a multi-site London teaching care provider, recognises and values the importance of good EOLC, and the quality of EOLC is used as one of the key metrics in assessing the quality of patient and family care across the trust. The principles of EOLC, including those enshrined in the Gold Standards Framework (GSF), are closely aligned with the trust's core values. Each member of staff is encouraged and supported, through the GSF process, to recognise and respond as befits their role in implementing the principles of EOLC, agreed by staff, and by patients and their relatives. This article describes the experience of, and collaboration between, trust staff and members of the GSF team, who have worked together for the past 18 months, and how this work has placed EOLC at the heart of patient care and staff recruitment. This collaboration has helped to enrich the culture of compassion and care that the trust aims to deliver, and to focus on providing person-centred care.

  10. On resilience and acceptance in the transition to palliative care at the end of life.

    Science.gov (United States)

    MacArtney, John I; Broom, Alex; Kirby, Emma; Good, Phillip; Wootton, Julia; Yates, Patsy M; Adams, Jon

    2015-05-01

    Specialist palliative care is a prominent and expanding site of health service delivery, providing highly specialised care to people at the end of life. Its focus on the delivery of specialised life-enhancing care stands in contrast to biomedicine's general tendency towards life-prolonging intervention. This philosophical departure from curative or life-prolonging care means that transitioning patients can be problematic, with recent work suggesting a wide range of potential emotional, communication and relational difficulties for patients, families and health professionals. Yet, we know little about terminally ill patients' lived experiences of this complex transition. Here, through interviews with 40 inpatients in the last few weeks of life, we explore their embodied and relational experiences of the transition to inpatient care, including their accounts of an ethic of resilience in pre-palliative care and an ethic of acceptance as they move towards specialist palliative care. Exploring the relationship between resilience and acceptance reveals the opportunities, as well as the limitations, embedded in the normative constructs that inflect individual experience of this transition. This highlights a contradictory dynamic whereby participants' experiences were characterised by talk of initiating change, while also acquiescing to the terminal progression of their illness. © The Author(s) 2014.

  11. Care professional's experiences about using Liverpool Care Pathway in end-of-life care in residential care homes.

    Science.gov (United States)

    Andersson, Sofia; Lindqvist, Olav; Fürst, Carl-Johan; Brännström, Margareta

    2017-06-29

    Residential care homes (RCHs) play an important role in end-of-life care, being the most common place of death for elderly people in several European countries. Care pathways such as the Liverpool Care Pathway for the Dying Patient (LCP) are used to improve and ensure quality care at the end of life. There is a lack of scientific evidence supporting the use of care pathways. A descriptive qualitative study. The aim was to describe care professionals' experiences of using the Liverpool Care Pathway for the Dying Patient in the care of dying residents in residential care homes. Five focus group interviews and two individual interviews with enrolled nurses (n = 10), Registered Nurses (n = 9) and general practitioners (n = 5) were carried out and analysed using qualitative content analysis. Care professionals expressed that they became confident through a shared approach to care, were supported to tailor the care according to the residents' individual needs, were supported to involve family members in decision-making and care and became more aware of the care environment. The results of this study indicate that the LCP might be a useful tool for care professionals in improving end-of-life care in RCHs through increased attention to the goals of care, the individual needs of residents and family involvement. © 2017 Nordic College of Caring Science.

  12. Rural Emergency Nurses' Suggestions for Improving End-of-Life Care.

    Science.gov (United States)

    Beckstrand, Renea L; Smith, Kelly E; Luthy, Karlen E Beth; Macintosh, Janelle L B

    2017-05-01

    Many patient visits to emergency departments result in the patient dying or being pronounced dead on arrival. The numbers of deaths in emergency departments are likely to increase as a significant portion of the U.S. population ages. Consequently, emergency nurses face many obstacles to providing quality end-of-life (EOL) care when death occurs. The purpose of this study was to identify suggestions that emergency nurses have to improve EOL care, specifically in rural emergency departments. A 57-item questionnaire was sent to 53 rural hospitals in 4 states in the Intermountain West, plus Alaska. One item asked nurses to identify the one aspect of EOL care they would change for dying patients in rural emergency departments. Each qualitative response was individually reviewed by a research team and then coded into a theme. Four major themes and three minor themes were identified. The major themes were providing greater privacy during EOL care for patients and family members, increasing availability of support services, additional staffing, and improved staff and community education. Providing adequate privacy for patients and family members was a major obstacle to providing EOL care in the emergency department, largely because of poor department design, especially in rural emergency departments where space is limited. Lack of support services and adequate staffing were also obstacles to providing quality EOL care in rural emergency departments. Consequently, rural nurses are commonly pulled away from EOL care to perform ancillary duties because additional support personnel are lacking. Providing EOL care in rural emergency departments is a challenging task given the limited staffing and resources, and thus it is imperative that nurses' suggestions for improvement of EOL care be acknowledged. Because of the current lack of research in rural EOL care, additional research is needed. Copyright © 2015 Emergency Nurses Association. Published by Elsevier Inc. All rights

  13. 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.

  14. Family care conferences in long-term care: Exploring content and processes in end-of-life communication.

    Science.gov (United States)

    Durepos, Pamela; Kaasalainen, Sharon; Sussman, Tamara; Parker, Deborah; Brazil, Kevin; Mintzberg, Susan; Te, Alyssa

    2017-12-29

    End-of-life (EoL) communication in long-term care (LTC) homes is often inadequate and delayed, leaving residents dying with unknown preferences or goals of care. Poor communication with staff contributes to families feeling unprepared, distressed, and dissatisfied with care. Family care conferences (FCCs) aim to increase structured systematic communication around goals and plans for the end of life. As part of the Strengthening a Palliative Approach to Care (SPA-LTC) project, FCCs were implemented in four LTC sites in Ontario, Canada. The purpose of this substudy was to examine FCC content and such guiding processes as documentation and multidisciplinary staff participation. A total of 24 FCCs were held for residents with a Palliative Performance Scale score of 40% (nearing death). Data were collected from conference forms (i.e., Family Questionnaires, Care Plan Conference Summaries), site-specific electronic chart documents, and fieldnotes. Directed content analysis of data was informed by the Canadian Hospice Palliative Care Association's Square of Care Model, which describes eight domains of care: disease management, physical, psychological, social, practical, spiritual, EoL, and loss/bereavement. The FCCs addressed an average of 71% of the content domains, with physical and EoL care addressed most frequently and loss/bereavement addressed the least. Two goals and five interventions were documented and planned on average per FCC. Examination of the processes supporting EoL communication found: (1) advantages to using FCC forms versus electronic charts; and (2) high levels of multidisciplinary participation overall but limited participation of personal support workers (PSWs) and physicians. Communication around the end of life in LTC can be supported through the use of FCCs. Description of content and FCC processes provides guidance to persons implementing FCCs. Recommendations for tailoring conferences to optimize communication include use of specific conference

  15. End of life care in nursing homes: Palliative drug prescribing and doctors' existential vulnerability

    OpenAIRE

    Jansen, Kristian

    2017-01-01

    Nursing homes are the main arena for end-of-life (EOL) care in Norway. Patients, their informal caregivers and academics alike have called for doctors more involved in EOL care, but the nursing home doctor’s role has been given relatively little attention in research. This thesis explores the doctor’s work with EOL care in nursing homes from the perspectives of EOL prescription changes (paper I); the effectiveness and safety of palliative prescriptions (paper II); and from...

  16. The Evolution and Dissemination of the Education in Palliative and End-of-Life Care Program.

    Science.gov (United States)

    Hauser, Joshua M; Preodor, Michael; Roman, Elisa; Jarvis, Derek M; Emanuel, Linda

    2015-09-01

    Even with growing numbers of fellowship-trained palliative care providers, primary palliative care knowledge and skills are needed to meet the national demands for palliative care. The Education in Palliative and End-of-Life Care (EPEC) Program has been one model of training clinicians in primary palliative care skills. In our second 5 years of development and dissemination, we have focused on adapting EPEC to different specialties. Our aim was to describe the development of EPEC adaptations and document the dissemination of our curriculum. The study design was a survey of EPEC trainers and documentation of other dissemination efforts via literature and Internet searches. Our subjects were all EPEC trainers and end-learners of our curriculum. We measured dissemination and teaching efforts by our trainers and evidence of EPEC use via literature and EPEC's searches. In Internet second 5 years of active development, teaching, and dissemination, we have created five major adaptations (EPEC-Oncology, EPEC-Oncology-Canada, EPEC-Emergency Medicine, EPEC-India, and EPEC for Veterans) and trained more than 1000 trainers. Through the efforts of these Trainers and our online dissemination, more than 74,000 reported end-learners have been taught parts of the EPEC curriculum. In addition, we discovered multiple medical school courses, continuing medical education (CME), courses and specialty guidelines that have incorporated material from EPEC. In its second 5 years, EPEC remains a robust platform for adaptation to new specialties and for dissemination of primary palliative care knowledge.

  17. 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 skills (r = 0.383, P skills or empathy. Overall, students perceived simulation-based end-of-life care 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

  18. Multimorbidity and End of Life Care in Patients with Cardiovascular Disease.

    Science.gov (United States)

    Pak, Esther; Wald, Joyce; Kirkpatrick, James N

    2016-05-01

    The care of patients with severe cardiovascular disease and multimorbidity entails complex medical decision-making especially at the end of life. Proven therapies must be incorporated into the context of patient preferences, values, and goals to achieve effective titration of medications and appropriate initiation and withdrawal of cardiac device therapies. As patients decline in the terminal stages, it is important to modify medical and device therapies in accordance with goals and values, and with hemodynamic changes, increasing multimorbidity, and accumulating symptom burden. The provision of effective end of life care for those with cardiovascular disease and multimorbidity requires cooperation between palliative care, specialty care, and primary care. Copyright © 2016 Elsevier Inc. All rights reserved.

  19. Ethics and end-of-life care for adults in the intensive care unit.

    Science.gov (United States)

    Curtis, J Randall; Vincent, Jean-Louis

    2010-10-16

    The intensive care unit (ICU) is where patients are given some of the most technologically advanced life-sustaining treatments, and where difficult decisions are made about the usefulness of such treatments. The substantial regional variability in these ethical decisions is a result of many factors, including religious and cultural beliefs. Because most critically ill patients lack the capacity to make decisions, family and other individuals often act as the surrogate decision makers, and in many regions communication between the clinician and family is central to decision making in the ICU. Elsewhere, involvement of the family is reduced and that of the physicians is increased. End-of-life care is associated with increased burnout and distress among clinicians working in the ICU. Since many deaths in the ICU are preceded by a decision to withhold or withdraw life support, high-quality decision making and end-of-life care are essential in all regions, and can improve patient and family outcomes, and also retention of clinicians working in the ICU. To make such a decision requires adequate training, good communication between the clinician and family, and the collaboration of a well functioning interdisciplinary team. Copyright © 2010 Elsevier Ltd. All rights reserved.

  20. 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

  1. Iranian nurses' preparation for loss: finding a balance in end-of-life care.

    Science.gov (United States)

    Boroujeni, Ali Zargham; Mohammadi, Rakhshandeh; Oskouie, Sayede Fatemeh Haghdoost; Sandberg, Jonas

    2009-08-01

    To explore the nurse-patient interaction in terminally ill situations in acute care, focusing on the nurses' preparation for loss. Caring for dying patients can be a distressing and sometimes even threatening experience for nurses. Despite the vast body of literature on nurse/patient interaction and the quality of end-of-life care, few studies focus specifically on nurses' experience. A grounded theory approach was used to explore nurses' interaction with dying patients and their families and examine how nurses deal with situations in which the patient's death is inevitable. Eighteen nurses were interviewed up to three times each at three teaching hospitals in Isfahan, Iran, during autumn 2006. A shortlist of possible participants was obtained by means of theoretical sampling and those who had experienced the death of patients and were able to express their feelings verbally were selected. The results clarified a core consideration: striking a balance between restorative and palliative care, information and hope, expectations and abilities and intimacy and distance. Attaining a balance in caring for dying patients is a major challenge to nurses: it concerns not only their interactions with patients and their families, but also their perceptions of themselves and their actions in end-of-life care. In end-of-life care, it is important for nurses to be able to change the focus of their care when the patient's condition is diagnosed as irreversible. They also need to be well equipped to maintain a balance, thereby preparing themselves for the patient's forthcoming death.

  2. Palliative and end-of-life care issues in chronic kidney disease.

    Science.gov (United States)

    Combs, Sara A; Davison, Sara N

    2015-03-01

    Patients with progressive chronic kidney disease (CKD) have high morbidity, mortality, and symptom burden. Cardiovascular disease (CVD) and congestive heart failure (CHF) often contribute to these burdens and should be considered when providing recommendations for care. This review aims to summarize recent literature relevant to the provision of palliative and end-of-life care for patients with progressive CKD and specifically highlights issues relevant to those with CVD and CHF. Dialysis may not benefit older, frail patients with progressive CKD, especially those with other comorbidities. Patients managed conservatively (i.e., without dialysis) may live as long as patients who elect to start dialysis, with better preservation of function and quality of life and with fewer acute care admissions. Decisions regarding dialysis initiation should be made on an individual basis, keeping in mind each patient's goals, comorbidities, and underlying functional status. Conservative management of progressive kidney disease is frequently not offered but is likely to benefit many older, frail patients with comorbidities such as CHF and CVD. A palliative approach to the care of many patients with progressive CKD is essential to ensuring they receive appropriate quality care.

  3. Important aspects of end-of-life care among veterans: implications for measurement and quality improvement.

    Science.gov (United States)

    Casarett, David; Pickard, Amy; Amos Bailey, F; Ritchie, Christine; Furman, Christian; Rosenfeld, Ken; Shreve, Scott; Shea, Judy A

    2008-02-01

    To identify aspects of end-of-life care in the U.S. Department of Veterans Affairs (VA) health care system that are not assessed by existing survey instruments and to identify issues that may be unique to veterans, telephone interviews using open-ended questions were conducted with family members of veterans who had received care from a VA facility in the last month of life. Responses were compared to validated end-of-life care assessment instruments in common use. The study took place in four VA medical centers and one family member per patient was invited to participate, selected from medical records using predefined eligibility criteria. These family members were asked to describe positive and negative aspects of the care the veteran received in the last month of life. Interview questions elicited perceptions of care both at VA sites and at non-VA sites. Family reports were coded and compared with items in five existing prospective and retrospective instruments that assess the quality of care that patients receive near the end of life. Interviews were completed with 66 family members and revealed 384 codes describing both positive and negative aspects of care during the last month of life. Almost half of these codes were not represented in any of the five reference instruments (n=174; 45%). These codes, some of which are unique to the veteran population, were grouped into eight categories: information about VA benefits (n=36; 55%), inpatient care (n=36; 55%), access to care (n=33; 50%), transitions in care (n=32; 48%), care that the veteran received at the time of death (n=31; 47%), home care (n=26; 40%), health care facilities (n=12; 18%), and mistakes and complications (n=18; 27%). Although most of the reference instruments assessed some aspect of these categories, they did not fully capture the experiences described by our respondents. These data suggest that many aspects of veterans' end-of-life care that are important to their families are not assessed by

  4. Health care Professionals' Experiences and Needs When Delivering End-of-Life Care to Children: A Qualitative Study.

    Science.gov (United States)

    Bergsträsser, Eva; Cignacco, Eva; Luck, Patricia

    2017-01-01

    Pediatric end-of-life care (EOL care) entails challenging tasks for health care professionals (HCPs). Little is known about HCPs' experiences and needs when providing pediatric EOL care in Switzerland. This study aimed to describe the experiences and needs of HCPs in pediatric EOL care in Switzerland and to develop recommendations for the health ministry. The key aspect in EOL care provision was identified as the capacity to establish a relationship with the dying child and the family. Barriers to this interaction were ethical dilemmas, problems in collaboration with the interprofessional team, and structural problems on the level of organizations. A major need was the expansion of vocational training and support by specialized palliative care teams. We recommend the development of a national concept for the provision of EOL care in children, accompanied by training programs and supported by specialized pediatric palliative care teams located in tertiary children's hospitals.

  5. Organization of nursing and quality of care for veterans at the end of life.

    Science.gov (United States)

    Kutney-Lee, Ann; Brennan, Caitlin W; Meterko, Mark; Ersek, Mary

    2015-03-01

    The Veterans Health Administration (VA) has improved the quality of end-of-life (EOL) care over the past several years. Several structural and process variables are associated with better outcomes. Little is known, however, about the relationship between the organization of nursing care and EOL outcomes. To examine the association between the organization of nursing care, including the nurse work environment and nurse staffing levels, and quality of EOL care in VA acute care facilities. Secondary analysis of linked data from the Bereaved Family Survey (BFS), electronic medical record, administrative data, and the VA Nursing Outcomes Database. The sample included 4908 veterans who died in one of 116 VA acute care facilities nationally between October 2010 and September 2011. Unadjusted and adjusted generalized estimating equations were used to examine associations between nursing and BFS outcomes. BFS respondents were 17% more likely to give an excellent overall rating of the quality of EOL care received by the veteran in facilities with better nurse work environments (P ≤ 0.05). The nurse work environment also was a significant predictor of providers listening to concerns and providing desired treatments. Nurse staffing was significantly associated with an excellent overall rating, alerting of the family before death, attention to personal care needs, and the provision of emotional support after the patient's death. Improvement of the nurse work environment and nurse staffing in VA acute care facilities may result in enhanced quality of care received by hospitalized veterans at the EOL. Copyright © 2015 American Academy of Hospice and Palliative Medicine. All rights reserved.

  6. Understanding bereaved family members' dissatisfaction with end-of-life care in nursing homes.

    Science.gov (United States)

    Thompson, Genevieve N; McClement, Susan E; Menec, Verena H; Chochinov, Harvey M

    2012-10-01

    With increasing numbers of older adults identifying a nursing home (NH) as their final place of care, it is important to assess the quality of dying in this setting and understand factors that impact family members' dissatisfaction with end-of-life care. A retrospective bereaved family member survey (N = 208) was conducted in 21 NHs located in urban areas of central Canada. Bereaved family members who were dissatisfied with care identified significantly more concerns in all domains assessed and were more likely to have problems with: (a) receiving confusing information from nursing staff about the resident's care, including medical treatments; (b) receiving inadequate information from nursing staff; and (c) feeling that end-of-life care was different than they had expected. Since the quality of communication between nurses, residents, and family members is the main factor that determines families' dissatisfaction with care, strategies and interventions aimed at reducing unmet information needs will be vital to improving end-of-life care in NHs. Copyright 2012, SLACK Incorporated.

  7. End-of-Life Care in Nursing Homes: A Qualitative Interpretive Meta-Synthesis.

    Science.gov (United States)

    Wallace, Cara L; Adorno, Gail; Stewart, Daniel B

    2017-12-06

    Due to large number of deaths occurring in nursing home (NH) settings, along with reports of pain and suffering, there is great need for improvements in the provision of end-of-life (EOL) care in NHs. The aim of this study was to develop a comprehensive understanding of the experience of dying in NHs through the perspective of residents, family, and facility staff. This study uses a qualitative interpretive meta-synthesis to provide a holistic view of EOL care in NHs across multiple qualitative studies. Researchers synthesized the findings of 13 qualitative articles, including the diverse perspective of 91 dying residents, 419 NH staff, and 156 family members/caregivers across at least 44 NHs. A qualitative meta-synthesis employs the following steps: identification of studies, theme extraction, translation, and synthesis of findings. Thematic analysis is organized using a conceptual model demonstrating the links between environmental and personal factors impacting EOL care in NHs. Findings provide support for the importance of a relational community and culture change within NHs for positive EOL experiences, in addition to providing a model to guide future research priorities.

  8. Who cares for the caregivers? Why medical social workers belong on end-of-life care teams.

    Science.gov (United States)

    Dubus, Nicole

    2010-01-01

    Changes within the health care industry have resulted in a shift that, to a large extent, places patients in the position of managing their own health care. While self-determination is desirable, it can also lead to new challenges, as when patients who are critically ill and/or dying must rely on family members to function as primary caregivers and managers of their treatment plans. Typically, patients and their families lack the guidance and oversight of a medical professional to coordinate a multifaceted health care regimen instituted by the variety of specialists involved in patients' diagnoses and treatments. As the patients' health declines and treatment plans become more complex, so too does the level of involvement of family caregivers, who often must manage treatment plans in addition to providing bedside care. This article cites the example of a woman who was exhausted by her role as sole caregiver for her dying husband and describes her feelings of powerlessness within the hospital setting as she struggled to coordinate assistance from her husband's medical specialists during end-of-life decision making. This case illustrates the importance of the following: (a) in cases involving hospitalized patients who require complex care from multiple specialists, it should become standard practice to enlist medical social workers to provide an overall assessment of the patients' status, prognoses, and home care plans, (b) in cases involving prolonged home care culminating in end-of-life decisions, the needs of nonprofessional caregivers must be recognized, evaluated, and addressed.

  9. Improving end of life care in care homes; an evaluation of the six steps to success programme.

    Science.gov (United States)

    O'Brien, Mary; Kirton, Jennifer; Knighting, Katherine; Roe, Brenda; Jack, Barbara

    2016-06-03

    There are approximately 426,000 people residing within care homes in the UK. Residents often have complex trajectories of dying, which make it difficult for staff to manage their end-of-life care. There is growing recognition for the need to support care homes staff in the care of these residents with increased educational initiatives. One educational initiative is The Six Steps to Success programme. In order to evaluate the implementation of Six Steps with the first cohort of care homes to complete the end-of-life programme in the North West of England., a pragmatic evaluation methodology was implemented in 2012-2013 using multiple methods of qualitative data collection; online questionnaire with facilitators (n = 16), interviews with facilitators (n = 9) and case studies of care homes that had completed the programme (n = 6). The evaluation explored the implementation approach and experiences of the programme facilitators and obtain a detailed account of the impact of Six Steps on individual care homes. Based upon the National Health Service (NHS) End of Life Care (EoLC) Programme, The Route to Success in EoLC - Achieving Quality in Care Homes. The programme was flexibly designed so that it could be individually tailored to the geographical location and the individual cohort requirements. Facilitators provided comprehensive and flexible support to care homes. Challenges to programme success were noted as; lack of time allocated to champions to devote to additional programme work, inappropriate staff selected as 'Champions' and staff sickness/high staff turnover presented challenges to embedding programme values. Benefits to completing the programme were noted as; improvement in Advance Care Planning, improved staff communication/confidence when dealing with multi-disciplinary teams, improved end-of-life processes/documentation and increased staff confidence through acquisition of new knowledge and new processes. The findings suggested an overall

  10. End-of-life care bonus promoting end-of-life care in nursing homes: An 11-year retrospective longitudinal prefecture-wide study in Japan.

    Science.gov (United States)

    Nishiguchi, Sho; Sugaya, Nagisa; Sakamaki, Kentaro; Mizushima, Shunsaku

    2017-03-22

    The end-of-life (EOL) care bonus introduced by the Japanese government works as a financial incentive and framework of quality preservation, including advance care planning, for EOL care among nursing home residents. This study aims to clarify the effects of the EOL care bonus in promoting EOL care in nursing homes. A longitudinal observational study using a questionnaire was conducted. We invited 378 nursing homes in Kanagawa prefecture in Japan, a region with a rapidly aging population, to participate in the study. The outcome was the number of residents dying in nursing homes from 2004 to 2014. In a linear mixed model, fixed-effect factors included year established, unit care, regional elderly population rate and hospital beds, adjacent affiliated hospital, full-time physician on site, physician's support during off-time, basic EOL care policy, usage of the EOL care bonus, EOL care conference, and staff experience of EOL care. A total of 237 nursing home facilities responded (62.7%). The linear mixed model showed that the availability of the EOL care bonus (coefficient 3.1, 95 % CI 0.67-5.51, p = 0.012) and years of usage of the EOL care bonus (p nursing homes. Our analysis revealed that the EOL care bonus has the potential to increase the number of residents receiving EOL care in nursing homes over several years. EOL care conferences, physician support for emergency care during off-time, and the presence of an adjacent affiliated hospital may also increase the number of residents receiving EOL care in nursing homes. These results suggest that a government financial incentive may contribute to effective EOL care among nursing home residents in other developed countries with rapidly aging populations.

  11. The challenges of implementing a multi-centre audit of end-of-life care in care homes.

    Science.gov (United States)

    Levy, Jean; Kinley, Julie; Conway, Frances

    2016-11-02

    This article aims to share the experience of a hospice in facilitating a multi-centre audit of end-of-life care in care homes, particularly noting the challenges and enablers of carrying out the audit. The audit was a retrospective multi-centre survey of bereaved relatives/next of kin of residents who died in the care home, using an anonymous, validated questionnaire: the Family Perception of Care Scale. Questionnaires were sent 3-months after bereavement. Returned questionnaires were analysed using SPSS and Excel. The care homes were in areas encompassing outer and inner city populations. The team identified eight challenges to the audit process, in particular, embedding procedures within the care homes, non-responses and developing action plans for improvement. Overall, the audit provided an indication of where improvements could be made and where care was already excellent, built confidence and increased expertise in the care-home staff.

  12. Talking about end-of-life care: Perspectives of nursing home residents.

    Science.gov (United States)

    Towsley, Gail L; Hirschman, Karen B

    2017-08-01

    The purpose of the paper is to describe how residents express preferences for end-of-life (EOL) care. For this qualitative study, we conducted semi-structured interviews and completed conventional content analysis to describe how residents' expressed their preferences for care at the end of life. Sixteen residents from four nursing homes (NH) in southeastern Pennsylvania participated in this study. Residents were on average 88 years old, primarily non White, and widowed. Three key domains emerged from the analyses: Preferences for Today, Anticipating the End of My Life, and Preferences for Final Days. Residents linked their everyday living and EOL preferences by using 'if and then' logic to convey anticipation and readiness related to EOL. These findings suggest new strategies to start discussions of EOL care preferences with NH residents. Copyright © 2017 Elsevier Inc. All rights reserved.

  13. Integrative review: parent perspectives on care of their child at the end of life.

    Science.gov (United States)

    Aschenbrenner, Ann P; Winters, Jill M; Belknap, Ruth Ann

    2012-10-01

    This integrative review aims to describe parents' perspectives on end-of-life care for their children. Fifteen publications from a literature search of the Cochrane databases, CINAHL, MEDLINE, and PSYCHinfo were included in the review. Recurring themes included poor communication/lack of information, strained relationships/inadequate emotional support, parental need to maintain parent/child relationships in life and death, quality of care continues after the death of the child, influence of services/planning on parent/child impacts quality of life, and the difficult decision to terminate life support. No studies were identified that focused on parents' perspectives on the care their child received at the end of life. Further research that focuses on the special needs of parents at this difficult time is needed. Copyright © 2012 Elsevier Inc. All rights reserved.

  14. 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 CY2005-2007 100% Minimum Data Set, Medicare beneficiary file, and inpatient and hospice claims. Logistic regression models were estimated to predict the probability of each outcome conditional on decedents’ risk factors. For each facility, QMs were calculated as the difference between the actual and the expected risk-adjusted outcome rates. We fit multivariate linear regression models, with fixed state effects, for each QM to assess the association with urban–rural location. Results: We found urban–rural differences for in-hospital death and hospice QMs, but not for pain. Compared with NHs located in urban areas, facilities in smaller towns and in isolated rural areas have significantly (p small towns, they are not statistically significant between facilities located in small towns and isolated rural areas. Implications: This study provides empirical evidence for urban–rural differences in EOL quality of care using a national sample of NHs. Identifying differences is a necessary first step toward improving care for dying NH residents and for bridging the urban–rural gap. PMID:22230492

  15. 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.

  16. Administrators’ Perspectives on Changing Practice in End-of-Life Care in a State Prison System

    Science.gov (United States)

    Penrod, Janice; Loeb, Susan J.; Smith, Carol A.

    2013-01-01

    Objective Sentencing trends have created a demographic shift in prison populations. Greater numbers of inmates are aging and dying in prison, creating a demand for enhanced end-of-life care. Changing practice to meet escalating care demands in corrections settings is complicated by economic constraints, attitudinal barriers, and organizational features. This study explored perspectives of end-of-life care held by administrators in a state prison system to reveal challenges to changing practice to meet the needs of inmates suffering advanced illness and dying in prison. Design and Sample Qualitative interviews were conducted with 12 administrators from the central office of a state department of corrections. Results Key influences impacting end-of-life care services included: local prison culture; treatment versus security focus; case-by-case consideration; public sentiment; budget neutral approaches; and conflicting views of service targets. Conclusions These findings revealed the organizational structures, attitudes, and beliefs held by the administrative echelon of a state prison system and were used to guide the derivation of discrete approaches to changing practice in this complex system. Contextual evaluation permitted a much deeper understanding of the influences on changing practice in this hierarchical bureaucracy. This type of preliminary evaluation is crucial to infusing new practice initiatives in complex organizations caring for stigmatized, at-risk populations. PMID:24588128

  17. Improving Caregivers' Perceptions Regarding Patient Goals of Care/End-of-Life Issues for the Multidisciplinary Critical Care Team.

    Science.gov (United States)

    Wessman, Brian T; Sona, Carrie; Schallom, Marilyn

    2017-01-01

    With population aging and growth, use of critical care medicine at the end of life continues to rise, while many critical care providers are not adequately trained regarding goals of care/end-of-life (GOC/EOL) issues. A multidisciplinary intensive care unit (ICU) team intervention regarding GOC/EOL communication will enhance the clinical abilities of all critical care providers when discussing GOC/EOL issues and increase ICU staff comfort level while improving transitions for patients to a comfort care approach. This study was a preintervention/postintervention survey evaluation. This study was conducted at an academic tertiary surgical burn trauma ICU. The intervention was provided to nursing, ancillary staff, house staff, and attending physicians. An initial survey was circulated among the critical care staff for baseline expectations, satisfaction, and understanding of GOC/EOL care. A robust intervention was begun including the creation of a multidisciplinary GOC/EOL team, communication tools for providers, patient-family pamphlets, standardized EOL order sets, and formalized didactic sessions. Subsequently, the same survey was circulated and compared to baseline data. Preintervention/postintervention survey data were reviewed and statistically analyzed. Our survey response rate for preintervention/postintervention was 50.4% and 36.1%, respectively. The intervention generated heightened interest in improving family communication and provided focal direction to foster this growth. Based on the serial surveys regarding our intervention, statistically significant staff improvements were seen in "work stress" (P = .04), "EOL information" (P = .006), and "space allotment" (P = .001). Improved congruence of families and health care providers regarding decision over intensity of care was also noted. We created a novel unit-based multidisciplinary program for improved EOL/GOC approaches in the critical care setting. A similarly formatted program could be adapted by

  18. End-of-life care in intensive care units: family routines and environmental factors.

    Science.gov (United States)

    Fridh, Isabell; Forsberg, Anna; Bergbom, Ingegerd

    2007-03-01

    The purpose of this study was to describe family care routines and to explore environmental factors when patients die in Swedish intensive care units (ICUs). The main research questions were: what are the physical environmental circumstances and facilities when caring for patients in end-of-life and are there any routines or guidelines when caring for dying patients and their families? A questionnaire was sent to 79 eligible Swedish ICUs in December 2003, addressed to the unit managers. The response rate was 94% (n = 74 units). The findings show that, despite recommendations highlighting the importance of privacy for dying ICU patients and their families, only 11% of the respondents stated that patients never died in shared rooms in their ICU. If a patient dies in a shared room, nurses strive to ensure a dignified goodbye by moving the body to an empty room or to one specially designated for this purpose. The majority (76%) of the units had waiting rooms within the ICU. The study also revealed that there is a need for improvements in the follow-up routines for bereaved families. Many units reported (51%) that they often or almost always offer a follow-up visit, although in most cases the bereaved family had to initiate the follow-up by contacting the ICU. Guidelines in the area of end-of-life care were used by 25% of the ICUs. Further research is necessary to acquire a deeper knowledge of the circumstances under which patients die in ICUs and what impact the ICU environment has on bereaved families.

  19. End-of-Life Care Planning in Accountable Care Organizations: Associations with Organizational Characteristics and Capabilities.

    Science.gov (United States)

    Ahluwalia, Sangeeta C; Harris, Benjamin J; Lewis, Valerie A; Colla, Carrie H

    2017-05-30

    To measure the extent to which accountable care organizations (ACOs) have adopted end-of-life (EOL) care planning processes and characterize those ACOs that have established processes related to EOL. This study uses data from three waves (2012-2015) of the National Survey of ACOs. Respondents were 397 ACOs participating in Medicare, Medicaid, and commercial ACO contracts. This is a cross-sectional survey study using multivariate ordered logit regression models. We measured the extent to which the ACO had adopted EOL care planning processes as well as organizational characteristics, including care management, utilization management, health informatics, and shared decision-making capabilities, palliative care, and patient-centered medical home experience. Twenty-one percent of ACOs had few or no EOL care planning processes, 60 percent had some processes, and 19.6 percent had advanced processes. ACOs with a hospital in their system (OR: 3.07; p = .01), and ACOs with advanced care management (OR: 1.43; p = .02), utilization management (OR: 1.58, p = .00), and shared decision-making capabilities (OR: 16.3, p = .000) were more likely to have EOL care planning processes than those with no hospital or few to no capabilities. There remains considerable room for today's ACOs to increase uptake of EOL care planning, possibly by leveraging existing care management, utilization management, and shared decision-making processes. © Health Research and Educational Trust.

  20. End of life, death and dying in neonatal intensive care units in Latin America.

    Science.gov (United States)

    Fajardo, C A; González, S; Zambosco, G; Cancela, M J; Forero, L V; Venegas, M; Baquero, H; Lemus-Varela, L; Kattan, J; Wormald, F; Sola, A; Lantos, J

    2012-06-01

    Most analyses of end of life decisions in Neonatal Intensive Care Units (NICUs) have come from Europe/English-speaking countries. Would decisions be different in Latin American NICUs? Therefore, we aim to evaluate the approach to dying infants/families in NICUs in Latin America. Multinational descriptive study of all deaths in babies born at >22 weeks in eight NICUs in five Latin American countries. Deaths were categorized as: (i) no Cardiopulmonary Resuscitation (CPR) or life support offered; (ii) life support initiated but do not resuscitate (DNR) orders written or no CPR provided; (iii) full life support and CPR; and (iv) unclassifiable. There were 100 deaths, 81% in >27 weeks. Seventeen infants received no CPR/life support at birth, 10 died in DR and seven in NICU. There were 27 infants in group 2, 54 in group three and two in group 4. No baby had care withdrawn or care withdrawn/CPR withheld. Thirty-two infants had 'do not resuscitate' order. Decisions without parents' involvement in 15%, both parents present at death 24% and sedatives/narcotics documented 14%. Latin American NICUs differ from those in Northern Europe/English-speaking countries. More deaths are accompanied by full life support and CPR. DNR orders are rare. Withdrawal of life support is virtually non-existent. Latin American's doctors are more likely to make decisions without the objections of family about withholding life-sustaining treatment. © 2012 The Author(s)/Acta Paediatrica © 2012 Foundation Acta Paediatrica.

  1. Family involvement at the end-of-life and receipt of quality care.

    Science.gov (United States)

    Sudore, Rebecca L; Casarett, David; Smith, Dawn; Richardson, Diane M; Ersek, Mary

    2014-12-01

    Most patients will lose decision-making capacity at the end of life. Little is known about the quality of care received by patients who have family involved in their care. To evaluate differences in the receipt of quality end-of-life care for patients who died with and without family involvement. We retrospectively reviewed the charts of 34,290 decedents from 146 acute and long-term care Veterans Affairs facilities between 2010 and 2011. Outcomes included: (1) palliative care consult, (2) chaplain visit, and 3) death in an inpatient hospice or palliative care unit. We also assessed "do not resuscitate" (DNR) orders. Family involvement was defined as documented discussions with the health care team in the last month of life. We used logistic regression adjusted for demographics, comorbidity, and clustered by facility. For chaplain visit, hospice or palliative care unit death, and DNR, we additionally adjusted for palliative care consults. Mean (SD) age was 74 (±12) years, 98% were men, and 19% were nonwhite. Most decedents (94.2%) had involved family. Veterans with involved family were more likely to have had a palliative care consult, adjusted odds ratio (AOR) 4.31 (95% CI 3.90-4.76); a chaplain visit, AOR 1.18 (95% CI 1.07-1.31); and a DNR order, AOR 4.59 (95% CI 4.08-5.16) but not more likely to die in a hospice or palliative care unit. Family involvement at the end of life is associated with receipt of palliative care consultation and a chaplain visit and a higher likelihood of a DNR order. Clinicians should support early advance care planning for vulnerable patients who may lack family or friends. Published by Elsevier Inc.

  2. Differences in Utilization of Life Support and End-of-Life Care for Medical ICU Patients With Versus Without Cancer.

    Science.gov (United States)

    Koff, Geoffrey; Vaid, Urvashi; Len, Edward; Crawford, Albert; Oxman, David A

    2017-04-01

    To explore differences in the utilization of life support and end-of-life care between patients dying in the medical ICU with cancer compared with those without cancer. Retrospective review of 403 deaths or hospice transfers in the medical ICU from January 1, 2012, to June 30, 2013. Urban tertiary care university hospital. Consecutive medical ICU deaths or hospice transfers over an 18-month period. None. One hundred eighty-two patients (45%) had a diagnosis of active cancer and 221 (55%) did not. Despite similar severity of illness, there were significant differences in the use of life support and end-of-life care. Patients without cancer had longer medical ICU length of stay (median, 5 vs 4 d; p = 0.0495), used mechanical ventilation more often and for longer (83.7% vs 70.9%, p = 0.002; 4 vs 3 d, p = 0.017), and initiated dialysis more frequently (26.7% vs 14.8%; p = 0.0038). Patients without active cancer had family meetings later (median, 3 vs 2 d; p = 0.001), less frequent palliative care consultation (17.6% vs 32.4%; p = 0.0006), and took longer to transition to do not resuscitate or comfort care (median, 4 vs 3 d; p = 0.048). Among patients dying in the medical ICU, the diagnosis of active cancer influences the intensity of life support utilization and the quality of end-of-life care. Patients with active cancer use less life support and may receive better end-of-life care than similar patients without cancer. These differences are likely due to biases or misunderstandings about the trajectory of advanced nonmalignant disease among patients, families, and perhaps providers.

  3. 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.

  4. Theory inspired practice for end-of-life cancer care: an exploration of the McGill Model of Nursing.

    Science.gov (United States)

    Wright, David Kenneth; Gros, Catherine Pugnaire

    2012-01-01

    Nursing theories provide inspiration for practice by describing how to meet needs, enhance wellness, and respond to clients as whole persons. This paper discusses the McGill Model of Nursing with reference to how its ideas can support nursing practice for patients with cancer during the end-of-life phase. We suggest this model provides for a relational approach that is congruent with the philosophy of palliative care. The goal of this paper is to stimulate reflection amongst oncology nurses and nursing leaders. By comparing the value base of our practice against extant nursing theory, we may discover new opportunities for teaching and learning about what it means to be an end-of-life care nurse.

  5. Parent's Perspectives on the End-of-life Care of their Child with Cancer: Indian Perspective.

    Science.gov (United States)

    Latha, Sneha Magatha; Scott, Julius Xavier; Kumar, Satish; Kumar, Suresh M; Subramanian, Lalitha; Rajendran, Aruna

    2016-01-01

    Parents report that end-of-life decisions are the most difficult treatment-related decisions that they face during their child cancer experience. Research from the parent's perspective of the quality of end-of-life care of their cancer children is scarce, particularly in developing countries like India. This study aimed to identify the symptoms (medical/social/emotional) that most concerned parents at the end-of-life care of their cancer child and to identify the strategies parents found to be helpful during this period. We wanted to conduct this to focus on the parents perspectives on their cancer child's end-of-life care and to address the issues that could contribute to the comfort of the families witnessing their child's suffering. The study was conducted at Sri Ramachandra University, Chennai, a Tertiary Care Pediatric Hemato Oncology Unit. Parents who lost their child to cancer, treated in our institution were interviewed with a validated prepared questionnaire. Statistical analysis was performed using SAS statistical software package. Toward death, dullness (30%), irritability (30%), and withdrawn from surroundings (10%) were the most common symptoms encountered. About 30% of the children had fear to be alone. About 50% of the children had the fear of death. Pain, fatigue, loss of appetite were the main distressful symptoms that these children suffered from parents' perspective. Though the parents accepted that the child was treated for these symptoms, the symptom relief was seldom successful. The conclusion of the study was that at the end of their child's life, parents value obtaining adequate information and communication, being physically present with the child, preferred adequate pain management, social support, and empathic relationships by the health staff members.

  6. Palliative care physicians' experiences of end-of-life communication : A focus group study

    OpenAIRE

    Udo, Camilla; Lövgren, M; Lundquist, G; Axelsson, B

    2017-01-01

    The aim of this study was to explore palliative home care physicians' experiences regarding end-of-life breakpoint communication (BPC). This is a qualitative study where focus group interviews were conducted and analysed using qualitative content analysis. The results show that the participants saw themselves as being responsible for accomplishing BPC, and they were convinced that it should be regarded as a process of communication initiated at an early stage, i.e. proactively. However, BPC w...

  7. Spiritual end-of-life care in Dutch nursing homes: an ethnographic study.

    Science.gov (United States)

    Gijsberts, Marie-José H E; van der Steen, Jenny T; Muller, Martien T; Hertogh, Cees M P M; Deliens, Luc

    2013-09-01

    The aim of this study was to explore if and how spiritual needs are assessed and if spiritual care is provided to Dutch nursing home residents, including residents suffering from dementia, and if and how caregivers communicate and collaborate regarding the residents' spiritual needs. Two researchers conducted an ethnographic participatory study in a Dutch nursing home between April 2010 and June 2011, on a psychogeriatric unit (mostly dementia) and a somatic unit for residents suffering from physical disabilities. Inductive thematic analysis was used to identify patterns and trends and to interpret the data. The physicians did not actively address spiritual issues, nor was it part of the official job of care staff. There was no communication between the physicians and the spiritual counselor. When a resident was about to die, the nurses started an informal care process aimed at (spiritual) well-being, including cuddling, rituals, and music. This was not mentioned in the care plan or the medical chart. The nurses even supported the residents outside their professional role in their spare time. Furthermore, we identified different occupational subcultures (eg, nurses and physicians), in which behavior of residents was given different meaning, depending on the frame of reference within the subculture. Spiritual issues were addressed only informally and were not part of the formal care process, either for residents suffering from dementia or for those with physical disabilities. Our results raise questions about how the lack of communication about spiritual end-of-life care between disciplines, and the informal and formal care processes affect spiritual well-being. Copyright © 2013 American Medical Directors Association, Inc. Published by Elsevier Inc. All rights reserved.

  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. 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

    ...-Life and Palliative Care Science Needs Assessment: Funding Source (Survey of Authors) Summary: Under... Request: NEW. Need and Use of Information Collection: The NINR End-of-Life Science Palliative Care (EOL PC... in the 30-day Federal Register Notice. Proposed Collection: Title: NINR End-of-Life and Palliative...

  10. European perspectives on ethics and law in end-of-life care.

    Science.gov (United States)

    Jox, Ralf J; Horn, Ruth J; Huxtable, Richard

    2013-01-01

    End-of-life care practices and attitudes in Europe are highly diverse, which is unsurprising given the variety of cultural and religious patterns across this region. The most marked differences are in the legal and ethical stances towards assisted dying, although there are also variations in limitation of life-sustaining treatment and the authority of advance directives to decline such treatment. Palliative care has made a rapid and impressive development in many European countries over the last decade, and alleviating symptoms at the end of life is permitted, even if the drugs used might (in the rare case) not only relieve suffering but also shorten life. Fueled by the politically led process of European harmonization, future policies and laws on end-of-life care might converge. However, at the base of many ethical conflicts there remain deeply rooted differences about promoting the sanctity of life, eradicating suffering, and respecting patients' autonomous wishes. © 2013 Elsevier B.V. All rights reserved.

  11. End of life care for people with dementia: The views of health professionals, social care service managers and frontline staff on key requirements for good practice

    Science.gov (United States)

    Lee, Richard Philip; Bamford, Claire; Poole, Marie; McLellan, Emma; Exley, Catherine; Robinson, Louise

    2017-01-01

    Background Evidence consistently shows that people with advanced dementia experience suboptimal end of life care compared to those with cancer; with increased hospitalisation, inadequate pain control and fewer palliative care interventions. Understanding the views of those service managers and frontline staff who organise and provide care is crucial in order to develop better end of life care for people with dementia. Methods and findings Qualitative interviews and focus groups were conducted from 2013 to 2015 with 33 service managers and 54 staff involved in frontline care, including doctors, nurses, nursing and care home managers, service development leads, senior managers/directors, care assistants and senior care assistants/team leads. All were audio recorded and transcribed verbatim. Participants represented a diverse range of service types and occupation. Transcripts were subject to coding and thematic analysis in data meetings. Analysis of the data led to the development of seven key themes: Recognising end of life (EOL) and tools to support end of life care (EOLC), Communicating with families about EOL, Collaborative working, Continuity of care, Ensuring comfort at EOL, Supporting families, Developing and supporting staff. Each is discussed in detail and comprise individual and collective views on approaches to good end of life care for people with dementia. Conclusions The significant challenges of providing good end of life care for people with dementia requires that different forms of expertise should be recognised and used; including the skills and knowledge of care assistants. Successfully engaging with people with dementia and family members and helping them to recognise the dying trajectory requires a supportive integration of emotional and technical expertise. The study strengthens the existing evidence base in this area and will be used with a related set of studies (on the views of other stakeholders and observations and interviews conducted in

  12. End of life care for people with dementia: The views of health professionals, social care service managers and frontline staff on key requirements for good practice.

    Directory of Open Access Journals (Sweden)

    Richard Philip Lee

    Full Text Available Evidence consistently shows that people with advanced dementia experience suboptimal end of life care compared to those with cancer; with increased hospitalisation, inadequate pain control and fewer palliative care interventions. Understanding the views of those service managers and frontline staff who organise and provide care is crucial in order to develop better end of life care for people with dementia.Qualitative interviews and focus groups were conducted from 2013 to 2015 with 33 service managers and 54 staff involved in frontline care, including doctors, nurses, nursing and care home managers, service development leads, senior managers/directors, care assistants and senior care assistants/team leads. All were audio recorded and transcribed verbatim. Participants represented a diverse range of service types and occupation. Transcripts were subject to coding and thematic analysis in data meetings. Analysis of the data led to the development of seven key themes: Recognising end of life (EOL and tools to support end of life care (EOLC, Communicating with families about EOL, Collaborative working, Continuity of care, Ensuring comfort at EOL, Supporting families, Developing and supporting staff. Each is discussed in detail and comprise individual and collective views on approaches to good end of life care for people with dementia.The significant challenges of providing good end of life care for people with dementia requires that different forms of expertise should be recognised and used; including the skills and knowledge of care assistants. Successfully engaging with people with dementia and family members and helping them to recognise the dying trajectory requires a supportive integration of emotional and technical expertise. The study strengthens the existing evidence base in this area and will be used with a related set of studies (on the views of other stakeholders and observations and interviews conducted in four services to develop an

  13. [End of life conflicts in palliative care: a systematic review of the literature].

    Science.gov (United States)

    Mpinga, Emmanuel Kabengele; Chastonay, Philippe; Rapin, Charles-Henri

    2006-09-01

    To evaluate the extent and the quality of the research related to End of life conflicts in palliative care from 1995 to 2004. Accessible Literature of several electronic data bases (BDSP, Cinhal, Cochrane, Francis, Medline, Psychinfo, Saphir, Scopus and Web of science) as well as the grey literature. Studies published in French and English between 1995 and 2004 reporting end of life conflicts, tensions, disagreements, disputes in the context of palliative care. One hundred and two studies were included (87.2% published in English, 12.8% in French). Study designs include revues 27.4%), cross-sections 18.6% and case studies 18.6%. Reported conflicts are related to ethical issues 26.2%, to care 19.1%, to tensions between professionals and patients or families 11.1%, to team experiences 9%. Six studies 5.8% give prevalence figures of conflicts. Half of the studies 51.3% identify possible causes of conflicts: communication issues, euthanasia and suicide assistance demands, autonomy of patients, non respect of advance directives, cultural differences. Ten studies 9.8% identify specifically some effects of the conflicts: moral distress of patients; stress, burn out and guilt of health professionals; lack of trust between doctors and patients or families. Conflicts are mainly resolved through mediation and ethical discussions. Research data on end of life conflicts is scarce at all levels (quantity, quality, methods, social impact, and epistemology). A better understanding of end of life conflict might foster a more adequate management of difficult situations and ultimately a more peaceful death of patients, mourning of families and every day work of health professionals

  14. 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.

  15. A critical discourse analysis of provision of end-of-life care in key UK critical care documents.

    Science.gov (United States)

    Pattison, Natalie

    2006-01-01

    This article highlights certain practical and professional difficulties in providing end-of-life (EOL) care for patients in critical care units and explores discourses arising from guidelines for critical care services. A significant number of patients die in critical care after decisions to withdraw or withhold treatment. Guidelines for provision of critical care suggest, wherever possible, moving patients out of critical care at the EOL. This may not necessarily be conducive to a 'good death' for patients or their loved ones. There is a moral responsibility for both nurses and doctors to ensure that decision-making around EOL issues is sensitively implemented, that decisions about care includes families, patients when able, nurses and doctors, and that good EOL care is provided. A critical discourse analysis (CDA) of four key UK critical care documents published since 1996. The key documents give little clear guidance about how to provide EOL care in critical care. Discourses include the power dynamic in critical care between professions, families and patients, and how this impacts on provision of EOL care. Difficulties encountered include dilemmas at discharge and paternalism in decision-making. The technological environment can act as a barrier to good EOL care, and critical care nurses are at risk of assuming the dominant medical model of care. Nurses, however, are in a prime position to ensure that decision-making is an inclusive process, patient needs are paramount, the practical aspects of withdrawal lead to a smooth transition in goals of care and that comfort measures are implemented.

  16. Efficacy of the end-of-life nursing care continuing education program for nurses in general wards in Japan.

    Science.gov (United States)

    Yoshioka, Saori; Moriyama, Michiko; Ohno, Yumiko

    2014-08-01

    This study aimed to examine effectiveness of the End-of-life nursing care continuing education program for general ward nurses. A nonrandomized, before-after trial was conducted. The program was implemented for 25 nurses. The contents of the program consisted of the family assessment, general symptom management and practical use of theories and models regarding end-of-life nursing care. The primary outcome, implementation ability of end-of-life nursing care, was significantly improved after the program; improvements continued even at 2 months after. Similar results were obtained for nurses' confidence and knowledge concerning end-of-life nursing care. As for attitude toward end-of-life care, participants' scores were further elevated after the program. The participants rated the usefulness of the program as high. The effectiveness of the program was suggested from these results. In the future, this program should be widely used for in-service training. © The Author(s) 2013.

  17. Perspectives on death and dying: a study of resident comfort with End-of-life care

    Directory of Open Access Journals (Sweden)

    Jessica M. Schmit

    2016-11-01

    Full Text Available Abstract Background Despite the benefits to early palliative care in the treatment of terminal illness, barriers to timely hospice referrals exist. Physicians who are more comfortable having end-of-life (EOL conversations are more likely to refer to hospice. However, very little is known about what factors influence comfort with EOL care. Methods An anonymous survey was sent to all the residents and fellows at a single institution. Self-reported education, experience and comfort with EOL care was assessed. Using multivariate logistic regression analysis, variables that influenced comfort with EOL conversations were analyzed. Results Most residents (88.1% reported little to no classroom training on EOL care during residency. EOL conversations during residency were frequent (50.6% reported > 10 and mostly unsupervised (61.9%. In contrast, EOL conversations during medical school were infrequent (3.7% reported >10 and mostly supervised (78.6%. Most (54.3% reported little to no classroom training on EOL care during medical school. Physicians that reported receiving education on EOL conversations during residency and those who had frequent EOL conversations during residency had significantly higher comfort levels having EOL conversations (p = 0.017 and p = 0.003, respectively. Likewise, residents that felt adequately prepared to have EOL conversations when graduating from medical school were more likely to feel comfortable (p = 0.030. Conclusions Most residents had inadequate education in EOL conversation skills during medical school and residency. Despite the lack of training, EOL conversations during residency are common and often unsupervised. Those who reported more classroom training during residency on EOL skills had greater comfort with EOL conversations. Training programs should provide palliative care education to all physicians during residency and fellowship, especially for those specialties that are most likely to encounter

  18. Life after the Liverpool Care Pathway (LCP): a qualitative study of critical care practitioners delivering end-of-life care.

    Science.gov (United States)

    Ramasamy Venkatasalu, Munikumar; Whiting, Dean; Cairnduff, Karen

    2015-09-01

    To explore the experiences, challenges and practices of critical care practitioners since the discontinuation of the Liverpool Care Pathway in critical care settings. The Liverpool Care Pathway was widely used with an aim to improve communication and care for dying individuals and their relatives. However, widespread media criticism prompted a review, which resulted in the discontinuation of the Liverpool Care Pathway across all UK clinical settings. A qualitative study. The study was carried out in two large acute hospitals in England. Semi-structured interviews were conducted with 14 critical care practitioners, 6 months after discontinuation of the Liverpool Care Pathway. Transcribed verbatim data were analysed using framework analysis. Three key themes emerged: 'lessons learned', 'uncertainties and ambivalences' and 'the future'. Critical care practitioners reported that life after the Liverpool Care Pathway in critical care settings often involved various clinical ambivalences, uncertainties and inconsistencies in the delivery of end-of-life care, especially for less experienced practitioners. Critical care practitioners had 'become accustomed' to the components of the Liverpool Care Pathway, which still guide them in principle to ensure quality end-of-life care. The Liverpool Care Pathway's structured format was perceived to be a useful clinical tool, but was also criticized as a 'tick-box exercise' and for lacking in family involvement. This study posits two key conclusions. Despite experienced critical care practitioners being able to deliver quality end-of-life care without using the Liverpool Care Pathway, junior nursing and medical staff need clear guidelines and support from experienced mentors in practice. Evidence-based guidelines related to family involvement in end-of-life care planning in critical care settings are also needed to avoid future controversies. © 2015 John Wiley & Sons Ltd.

  19. An ethnographic study of strategies to support discussions with family members on end-of-life care for people with advanced dementia in nursing homes.

    Science.gov (United States)

    Saini, Geena; Sampson, Elizabeth L; Davis, Sarah; Kupeli, Nuriye; Harrington, Jane; Leavey, Gerard; Nazareth, Irwin; Jones, Louise; Moore, Kirsten J

    2016-07-07

    Most people with advanced dementia die in nursing homes where families may have to make decisions as death approaches. Discussions about end-of-life care between families and nursing home staff are uncommon, despite a range of potential benefits. In this study we aimed to examine practices relating to end-of-life discussions with family members of people with advanced dementia residing in nursing homes and to explore strategies for improving practice. An ethnographic study in two nursing homes where the Compassion Intervention was delivered. The Compassion Intervention provides a model of end-of-life care engaging an Interdisciplinary Care Leader to promote integrated care, educate staff, support holistic assessments and discuss end of life with families. We used a framework approach, undertaking a thematic analysis of fieldwork notes and observations recorded in a reflective diary kept by the Interdisciplinary Care Leader, and data from in-depth interviews with 23 informants: family members, GPs, nursing home staff, and external healthcare professionals. Four major themes described strategies for improving practice: (i) educating families and staff about dementia progression and end-of-life care; (ii) appreciating the greater value of in-depth end-of-life discussions compared with simple documentation of care preferences; (iii) providing time and space for sensitive discussions; and (iv) having an independent healthcare professional or team with responsibility for end-of-life discussions. The Interdisciplinary Care Leader role offers a promising method for supporting and improving end-of-life care discussions between families of people with advanced dementia and nursing home staff. These strategies warrant further evaluation in nursing home settings.

  20. [Nursing and the humanization of the end- of-life care within healthcare systems].

    Science.gov (United States)

    Gómez Arca, Marina

    2014-01-01

    The reflection upon the humanisation of the end-of-life process within healthcare systems and the implication of healthcare professionals is the main objective of this article. The evolution of the model of care and nurses leadership role at the end-of-life process is evaluated. This analysis starts from the first European references regarding advance wills, made in 1997 at the Oviedo Convention, until the introduction of the idea of advance directives incorporated into Spanish law in 2002. It sets the concept of advance planning in health-related decisions, which establishes a process of voluntary dialogue where every person can clarify values, preferences and wishes regarding the final moments of life, with the support of the healthcare professionals. Copyright © 2013 Elsevier España, S.L.U. All rights reserved.

  1. Truth Telling and Treatment Strategies in End-of-Life Care in Physician-Led Accountable Care Organizations: Discrepancies Between Patients' Preferences and Physicians' Perceptions.

    Science.gov (United States)

    Huang, Hsien-Liang; Cheng, Shao-Yi; Yao, Chien-An; Hu, Wen-Yu; Chen, Ching-Yu; Chiu, Tai-Yuan

    2015-04-01

    Providing patient-centered care from preventive medicine to end-of-life care in order to improve care quality and reduce medical cost is important for accountable care. Physicians in the accountable care organizations (ACOs) are suitable for participating in supportive end-of-life care especially when facing issues in truth telling and treatment strategy. This study aimed to investigate patients' attitudes toward truth telling and treatment preferences in end-of-life care and compare patients' attitudes with their ACOs physicians' perceptions.This nationwide study applied snowball sampling to survey physicians in physician-led ACOs and their contracted patients by questionnaire from August 2010 to July 2011 in Taiwan. The main outcome measures were beliefs about palliative care, attitudes toward truth telling, and treatment preferences.The data of 314 patients (effective response rate = 88.7%) and 177 physicians (88.5%) were analyzed. Regarding truth telling about disease prognosis, 94.3% of patients preferred to be fully informed, whereas only 80% of their physicians had that perception (P truth telling even when encountering terminal disease status (98.1% vs 85.3%). Regarding treatment preferences in terminal illness, nearly 90% of patients preferred supportive care, but only 15.8% of physicians reported that their patients had this preference (P truth telling and treatment strategies in end-of-life care. It is important to enhance physician-patient communication about end-of-life care preferences in order to achieve the goal of ACOs. Continuing education on communication about end-of-life care during physicians' professional development would be helpful in the reform strategies of establishing accountable care around the world.

  2. 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.

  3. IAGG/IAGG GARN International Survey of End-of-Life Care in Nursing Homes.

    Science.gov (United States)

    Wallace, Cara L; Swagerty, Daniel; Barbagallo, Mario; Vellas, Bruno; Cha, Heung Bong; Holmerova, Iva; Dong, Birong; Koopmans, Raymond; Cruz-Jentoft, Alfonso J; Gutierrez Robledo, Luis Miguel; Moreno, Juan Cuadros; Hajjar, Ramzi; Woo, Jean; Arai, Hidenori; Okochi, Jiro; Visvanathan, Renuka; Abdul-Rahman, Samia A; Goel, Ashish; Moser, Andrea; Rolland, Yves; Abbatecola, Angela M; Russo, Marcello; Morley, John E

    2017-06-01

    This article reports the findings of a survey on end-of-life (EOL) care in nursing homes of 18 long-term care experts across 15 countries. The experts were chosen as a convenience-based sample of known experts in each country. The survey was administered in 2016 and included both open-ended responses for defining hospice care, palliative care, and "end of life," and a series of questions related to the following areas-attitudes toward EOL care, current practice and EOL interventions, structure of care, and routine barriers. Overall experts strongly agreed that hospice and palliative care should be available in long-term care facilities and that both are defined by holistic, interdisciplinary approaches using measures of comfort across domains. However, it appears the experts felt that in most countries the reality fell short of what they believed would be ideal care. As a result, experts call for increased training, communication, and access to specialized EOL services within the nursing home. Copyright © 2017 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.

  4. Oncology nurses' perceptions of obstacles and role at the end-of-life care: cross sectional survey.

    Science.gov (United States)

    Blaževičienė, Aurelija; Newland, Jamesetta A; Čivinskienė, Vilija; Beckstrand, Renea L

    2017-12-19

    Major obstacles exist in the care of patients at the end of life: lack of time, poor or inadequate communication, and lack of knowledge in providing care. Three possible nursing roles in care decision-making were investigated: Information Broker, Supporter, and Advocate. The purpose of this study was to examine obstacles faced by oncology nurses in providing end-of-life (EOL) care and to examine roles of nurses in providing care. A descriptive, cross-sectional, correlational design was applied. The study was conducted at two major University Hospitals of Oncology in Lithuania that have a combined total of 2365 beds. The study sample consisted of 239 oncology registered nurses. Data collection tool included a questionnaire about assessment of obstacles and supportive behaviors, nursing roles, and socio-demographic characteristics. The two items perceived by respondents as the most intense obstacles to providing EOL care were The nurse's opinion on immediate patient care is not welcome, valued or discussed and. Family has no access to psychological help after being informed about the patient's diagnosis. The majority of respondents self-assigned the role of Supporter. Major obstacles in providing care included the nurse's opinion that immediate patient care was not valued, lack of nursing knowledge on how to treat the patient's grieving family, and physicians who avoided conversations with the patient and family members about diagnoses and prospects. In EOL care nurses most frequently acted as Supporters and less frequently as Advocates.

  5. Palliative and End-of-Life Ethical Dilemmas in the Intensive Care Unit.

    Science.gov (United States)

    Wiegand, Debra L; MacMillan, Julia; dos Santos, Maiara Rogrigues; Bousso, Regina Szylit

    2015-01-01

    Critical care nurses and advanced practice registered nurses frequently face bioethical dilemmas in clinical practice that are related to palliative and end-of-life care. Many of these dilemmas are associated with decisions made concerning continuing, limiting, or withdrawing life-sustaining treatments. The purpose of this article is to describe common ethical challenges through case study presentations and discuss approaches that critical care nurses and advanced practice registered nurses in collaboration with the interdisciplinary team can use to address these challenges. Resources that may be helpful in managing ethical dilemmas are identified.

  6. A pilot evaluation of the Arts for Life project in end-of-life care.

    Science.gov (United States)

    Gallagher, Ann

    To explore and evaluate the experience of the 'Arts for Life' project among patients or residents with terminal illness in nursing homes and the community, their relatives and practitioners. Semi-structured qualitative interviews were conducted with five patients/residents and two relatives. Five practitioners including a music therapist and a digital artist were involved in the study. The evaluation discusses the perceived benefits and challenges of the Arts for Life project from the perspectives of a small sample of patients/residents, relatives, nurses and arts facilitators. The findings suggested that the Arts for Life project provided opportunities for participants to express their creativity and individuality. A range of benefits was identified. Participants described their involvement in the project as providing a means of escapism, relief from pain and anxiety, and as helping them to engage with loss. The findings should be interpreted with caution as a result of the small sample size. The evaluation suggests that people with different diagnoses benefit in different ways from participation in the arts. An understanding of the role of the arts enables nurses to appreciate different responses to end-of-life care. Larger scale research is required with focused evaluation objectives to explore further the issues raised.

  7. Hospice utilization in nursing homes: association with facility end-of-life care practices.

    Science.gov (United States)

    Zheng, Nan Tracy; Mukamel, Dana B; Caprio, Thomas V; Temkin-Greener, Helena

    2013-10-01

    Hospice care provided to nursing home (NH) residents has been shown to improve the quality of end-of-life (EOL) care. However, hospice utilization in NHs is typically low. This study examined the relationship between facility self-reported EOL practices and residents' hospice use and length of stay. The study was based on a retrospective cohort of NH residents. Medicare hospice claims, Minimum Data Set, Online Survey, Certification, and Reporting system and the Area Resource File were linked with a survey of directors of nursing (DON) regarding institutional EOL practice patterns (EOLC Survey). In total, 4,540 long-term-care residents who died in 2007 in 290 facilities which participated in the EOLC Survey were included in this study. We measured NHs' tendency to offer hospice to residents and to initiate aggressive treatments (hospital transfers and feeding tubes) for EOL residents based on DON's responses to survey items. Residents' hospice utilization was determined using Medicare hospice claims. The prevalence of hospice use was 18%. The average length of stay was 93 days. After controlling for individual risk factors, facilities' self-reported practice measures associated with residents' likelihood of using hospice were tendency to offer hospice (p = .048) and tendency to hospitalize (p = .002). Residents in NHs reporting higher tendency to hospitalize tended to enroll in hospice closer to death. Residents' hospice utilization is not only associated with individual and facility characteristics but also with NHs' self-reported EOL care practices. Potential interventions to effect greater use of hospice may need to focus on facility-level care processes and practices.

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

    DEFF Research Database (Denmark)

    Fosse, Anette; Zuidema, Sytse; Boersma, Froukje

    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...... 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. Design: A cross-sectional study using an electronic questionnaire was conducted in 2015. Setting...

  9. Barriers to Hospice Care in Trauma Patients: The Disparities in End-of-Life Care.

    Science.gov (United States)

    Haines, Krista L; Jung, Hee Soo; Zens, Tiffany; Turner, Scott; Warner-Hillard, Charles; Agarwal, Suresh

    2018-01-01

    End-of-life and palliative care are important aspects of trauma care and are not well defined. This analysis evaluates the racial and socioeconomic disparities in terms of utilization of hospice services for critically ill trauma patients. Trauma patients ≥15 years old from 2012 to 2015 were queried from the National Trauma Databank. Chi-square and multivariate logistic regression analyses for disposition to hospice were performed after controlling for age, gender, comorbidities, injury severity, insurance, race, and ethnicity. Negative binomial regression analysis with margins for length of stay (LOS) was calculated for all patients discharged to hospice. Chi-square analysis of 2 966 444 patient's transition to hospice found patients with cardiac disease, bleeding and psychiatric disorders, chemotherapy, cancer, diabetes, cirrhosis, respiratory disease, renal failure, cirrhosis, and cerebrovascular accident (CVA) affected transfer ( P care than Caucasian patients (OR: 0.65, 0.60, 0.73; P care and significantly affect LOS. Our data demonstrate prominent racial and socioeconomic disparities exist, with uninsured and minority patients being less likely to receive hospice services and having a delay in transition to hospice care when compared to their insured Caucasian counterparts.

  10. Education, ethics, and end-of-life decisions in the intensive care unit.

    Science.gov (United States)

    Stevens, Lesley; Cook, Deborah; Guyatt, Gordon; Griffith, Lauren; Walter, Steven; McMullin, Joseph

    2002-02-01

    To examine the influence of education and clinical experience on residents' attitudes toward withdrawal of life support. Self-administered survey. Four Canadian teaching hospitals. Residents rotating through four intensive care units. The survey examined ethics education and experience regarding end-of-life care, importance of factors influencing withdrawal of life support, confidence in decisions, and recommendations for enhancing end-of-life education. The response rate was 83.9% (52 of 62). A minority of residents reported an appropriate amount of formal teaching on ethical principles (17.3%), patient-centered education (28.8%), and informal discussion (28.8%) before their intensive care unit rotation. During their rotation, most residents cared for patients in whom withdrawal of life support was considered. Although they usually attended family meetings, residents were never (34.6%) or rarely (42.3%) the primary discussant. Before the intensive care unit rotation, confidence in withdrawal decisions was related to male sex (p =.001) and previous patient-centered ethics education (p =.02). At the end of the intensive care unit rotation, only resident involvement in family meetings (p =.02) and being the primary discussant at such meetings (p =.01) were associated with confidence. After we adjusted for pre-rotation confidence in withdrawal of life support decision-making, the only predictor of post-rotation confidence was family meeting involvement (p end-of-life issues, and opportunity to lead family meetings. Experiential, case-based, patient-centered curricula are associated with resident confidence in withdrawal of life support decisions in the intensive care unit.

  11. 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.

  12. 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.

  13. End-of-Life Conversations and Hospice Placement: Association with Less Aggressive Care Desired in the Nursing Home.

    Science.gov (United States)

    Reinhardt, Joann P; Downes, Deirdre; Cimarolli, Verena; Bomba, Patricia

    2017-01-01

    Education about end-of-life care and treatment options, communication between family and health care providers, and having advance directives and medical orders in place are important for older adults with chronic, progressive decline and end-stage disease who spend their last days in the nursing home. This study used retrospective data (6 months before death) of long-stay nursing home decedents (N = 300) taken from electronic health records to capture the end-of-life experience. Findings showed for almost all decedents, Do Not Resuscitate and Do Not Intubate orders were in place, and just over one-half had Do Not Hospitalize and No Artificial Feeding orders in place. A small proportion had No Artificial Hydration or No Antibiotic orders in place. Overall, there was congruence between documented medical orders and treatment received. Findings showed that use of hospice and discussions about particular life-sustaining treatments each had significant associations with having less aggressive medical orders in place. These results can inform best practice development to promote high quality, person-directed, end-of-life care for nursing home residents.

  14. Ethical challenges in the provision of end-of-life care in Norwegian nursing homes.

    Science.gov (United States)

    Gjerberg, Elisabeth; Førde, Reidun; Pedersen, Reidar; Bollig, Georg

    2010-08-01

    As in other Western countries, most Norwegian nursing home patients are suffering from multi-pathological conditions and a large majority of them will die in the nursing home. End-of-life care represents many challenges, and it is a widespread concern that several nursing homes lack both resources and competence to ensure good quality care. This article examines the types and prevalence of ethical challenges in end-of-life care as nursing home staff consider them, as well as what they believe can help them to better cope with the ethical challenges. It is based on a national survey probing Norwegian nursing homes' end-of-life care at the ward level conducted in 2007. 664 respondents from 364 nursing homes answered the questionnaire, representing 68% of the patients and 76% of the nursing home sample. Inadequate care due to lack of resources and breaches of the patient's autonomy and integrity were the ethical challenges reported most often. Conflicts with the next of kin regarding nursing care and termination of life-prolonging treatment were reported more seldom. However, when asking the respondents to outline one of the most recent ethical dilemmas they had encountered, the majority of the respondents described ethical dilemmas concerning limitation of life-prolonging treatment, often mixed with disagreements between the wish of the family and that of the patient, or between the wish of the next of kin and what the staff consider to be right. Ethical dilemmas associated with breaches of the patient's autonomy and integrity were also thoroughly described. According to the staff, better ethical knowledge along with more time to reflect on ethical dilemmas were the initiatives most desired to improve the staff's way of handling ethical challenges. Furthermore, to have an opportunity to consult with a person holding ethical competence was emphasised by more than half of the respondents. (c) 2010 Elsevier Ltd. All rights reserved.

  15. Quality Indicators of End-of-Life Care in Patients With Cancer: What Rate Is Right?

    Science.gov (United States)

    Barbera, Lisa; Seow, Hsien; Sutradhar, Rinku; Chu, Anna; Burge, Fred; Fassbender, Konrad; McGrail, Kim; Lawson, Beverley; Liu, Ying; Pataky, Reka; Potapov, Alex

    2015-05-01

    To develop data-driven and achievable benchmark rates for end-of-life quality indicators using administrative data from four provinces in Canada. Indicators of end-of-life care were defined and measured using linked administrative data for 33 health regions across British Columbia, Alberta, Ontario, and Nova Scotia. These were emergency department use, intensive care unit admission, physician house calls and home care visits before death, and death in hospital. An empiric benchmark was defined using indicator rates from the top-ranked regions to include the top decile of patients overall. Funnel plots were used to graph each region's age- and sex-adjusted indicator rates along with the overall rate and 95% confidence limits. Rates varied approximately two- to four-fold across the regions, with physician house calls showing the greatest variation. Benchmark rates based on the top decile performers were emergency department use, 34%; intensive care unit admission, 2%; physician house calls, 34%; home care visits, 63%; and death in hospital, 38%. With the exception of intensive care unit admission, funnel plots demonstrated that overall indicator rates and their confidence limits were uniformly worse than benchmarks even after adjusting for age and sex. Few regions met the benchmark rates. There is significant variation in end-of-life quality indicators across regions in four provinces in Canada. Using this study's methods-deriving empiric benchmarks and funnel plots-regions can determine their relative performance with greater context that facilitates priority setting and resource deployment. Applying this study's methods can support quality improvement by decreasing variation and striving for a target. Copyright © 2015 by American Society of Clinical Oncology.

  16. 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

    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. 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. 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. 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.

  17. End-of-life care for cancer patients in an Internal Medicine department

    Directory of Open Access Journals (Sweden)

    Luigi Lusiani

    2013-03-01

    Full Text Available Introduction Many cancer patients die in the hospital, in spite of their preference to end their lives at home. Internal Medicine wards are poorly equipped to care for dying patients. Staff members have no specific training in palliative care, and the organization of the ward lacks flexibility. The entire staff (physicians and nurses of the Internal Medicine ward of our hospital took part in a specially designed training program, and a protocol for end-of-life care (EOL-care was implemented to improve the comfort of patients with terminal cancer. The aim of this study was to analyze the impact of this protocol on clinical practice in the ward, in terms of the number of interventions and the degree of control of key symptoms. Materials and methods The EOL-care protocol, which was established in cooperation with the Sue Ryder Foundation, was a modified version of the Liverpool Care Pathway. The main objective was to ensure the comfort of the dying patient through judicious discontinuation of all non-essential medications and interventions, frequent and systematic assessment of the key symptoms, and greater emphasis on communication with the patient and his/her caregivers. We compared 82 unselected cases managed with conventional care, representing the 20% of the deaths that occurred in 2007-2008 in our ward (controls, and 27 consecutive cancer patients cared for with the EOL-care protocol between May 2009 and February 2010 (cases. Results Patients in the case group received fewer interventions than controls (catheterization rate: 0% vs 19.4%; invasive procedure rate: 0% vs 8.5%; parenteral nutrition: 0% vs 3.6%, but they obtained almost complete relief of symptoms (pain, dyspnea, respiratory tract obstruction by secretions, agitation, nausea/vomiting. The most prominent result was pain relief: systematic checks revealed persistent pain in only 2.9% of the EOL-care group versus 59.7% of the controls during the last 48 hours of life. Discussion This

  18. Experiences and needs of family members in the end of life care at a nursinghome

    OpenAIRE

    Lena, Sallstrom-Olsson

    2005-01-01

    Background: There might be a risk that family members experience limited possibilities to act, participate and influence the end of life care for the elderly in the nursing home. For family members it could be the first time they face death which can imply a lot of questions and existential needs. Aim: The aim of this study was to examine the needs of family members in the patient terminal care in a nursing home. Research methods: The study implemented a qualitative approach and data was coll...

  19. A Welsh pilot study on a distance learning module for end of life care.

    Science.gov (United States)

    Lewis, Melanie; Jeynes, Kay; Anstey, Sally; Way, Helen

    2009-01-01

    In order to build on and improve the palliative care knowledge and skills of the district nurses in Cardiff, and the Vale of Glamorgan, the South East Wales Cancer Network in partnership with the local NHS Trust, commissioned Cardiff University to develop, implement and audit a bespoke distance learning style module in the foundations of end of life and palliative care. This will be utilised as an internal requirement for all band 5 and 6 nurses. The outcomes will determine whether the module is suitable as an All-Wales programme and whether it has potential for use with other disciplines.

  20. 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

  1. Measuring end-of-life care and outcomes in residential care/assisted living and nursing homes.

    Science.gov (United States)

    Zimmerman, Sheryl; Cohen, Lauren; van der Steen, Jenny T; Reed, David; van Soest-Poortvliet, Mirjam C; Hanson, Laura C; Sloane, Philip D

    2015-04-01

    The two primary residential options for older adults who require supportive care are nursing homes and residential care/assisted living. More than one-quarter of all deaths in the U.S. occur in these settings. Although the information available on end of life in long-term care has been growing, the comparative suitability of various measures to guide this work is unknown. To determine the optimal measures to assess end-of-life care and outcomes in nursing homes and residential care/assisted living. A total of 264 family members of decedents from 118 settings were interviewed and provided data on 11 instruments that have been used in, but not necessarily developed for, long-term care populations; Overall, 20 scales and subscales/indices were evaluated. Measures were compared on their psychometric properties and the extent to which they discriminated among important resident, family, and setting characteristics. Prioritizing measures that distinguish the assessment of care from the assessment of dying, and secondarily that exhibit an acceptable factor structure, this study recommends two measures of care-the Family Perceptions of Physician-Family Caregiver Communication and the End of Life in Dementia (EOLD)-Satisfaction With Care-and two measures of outcomes-the EOLD-Symptom Management and the EOLD-Comfort Assessment in Dying. An additional measure to assess outcomes is the Mini-Suffering State Examination (MSSE). The care measures and the MSSE are especially valuable as they discriminate between decedents who were and were not transferred immediately before death, an important outcome, and whether the family expected the death, a useful target for intervention. Despite these recommendations, measurement selection should be informed not only on the basis of psychometric properties but also by specific clinical and research needs. The data in this manuscript will help researchers, clinicians, and administrators understand the implications of choosing various

  2. Establishing an end-of-life program in an academic acute care hospital.

    Science.gov (United States)

    Counsell, Colleen; Adorno, Gail; Guin, Peggy

    2003-01-01

    The primary goal of end-of-life (EOL) care is to relieve suffering through measures that improve comfort and address the psychological, social, and spiritual needs of the dying. This article discusses the components of a pilot project that focused on palliative EOL care at an academic acute care hospital. An interdisciplinary team of nurses, social workers, chaplains, patient care coordinators, and advanced practice nurses established a common vision for the care of patients who were "in the dying process," or were expected to die during their hospitalizations. A nurse-social worker "Care-Pair Team" completed a consistent interdisciplinary EOL care needs assessment when treatment goals became strictly palliative. Interventions were driven by a clinical pathway and a pre-printed physician's order set that continually clarified the goals of treatment. Key elements of the program included leadership support, advance directives, education, communication, family involvement, symptom management, professional collaboration, and outcomes measurement.

  3. End-of-life care preferences of nursing home residents: Results of a cross-sectional study.

    Science.gov (United States)

    Ng, Charis Wei Ling; Cheong, S K; Govinda Raj, A; Teo, Wsk; Leong, Iyo

    2016-10-01

    Palliative care services were not available in nursing homes in Singapore. Project CARE (Care At the end-of-life for Residents in homes for the Elderly) was a pilot programme that aimed to promote advance care planning and improve end-of-life care in nursing homes. We aimed to examine end-of-life care preferences among nursing home residents, and identify factors associated with preference for medical intervention, cardiopulmonary resuscitation and place of death. A cross-sectional study using data from advance care planning discussions was conducted from September 2009 to April 2012 across seven nursing homes. The advance care planning discussion was conducted with the resident (with a prognosis of 6 months or 1 year), their families and staff from the nursing home and hospital. A total of 600 residents and their families completed the advance care planning discussion. Majority (93.2%) preferred not to proceed with cardiopulmonary resuscitation, 52.3% opted for limited additional intervention at the nursing home with escalation to the hospital if necessary and 77.0% preferred to die at the nursing home. Residents 85+ years (relative risk ratio: 3.34, 95% confidence interval: 1.13-9.93, p = 0.030) were more likely to prefer medical intervention at the nursing home only. No associations were found with the preference for cardiopulmonary resuscitation. Residents who were single, or who were Christians or Catholics (adjusted odds ratio: 2.09, 95% confidence interval: 1.04-4.19, p = 0.039), were more likely to prefer to die at the nursing home. Preferences for medical interventions in nursing homes provide support to extend palliative care services to nursing homes, which may benefit residents who are older, single, or Christians or Catholics. © The Author(s) 2016.

  4. 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.

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

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    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

  6. 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.

  7. End of life care in nursing homes in Spain: Exploratory analysis and evidences of validity of a new scale.

    Science.gov (United States)

    Sánchez-García, María Remedios; Gutiérrez-Romero, Jose Antonio; Fernández-Alcántara, Manuel; Hueso-Montoro, César; Goodman, Claire; Montoya-Juárez, Rafael

    2017-10-01

    Quality end-of-life care is a central issue in nursing homes, requiring the assessment of individual and family needs by health professionals. Although previous instruments have been developed, they usually rely on family reports and have been adapted from other clinical contexts (hospital or primary care). It is important to consider how health care professionals working in nursing homes perceive what is necessary to achieve quality end-of-life care. In this study, the objective was to develop an instrument to assess quality of end-of-life care in the context of Spanish care homes. A 24 item scale Nursing Home End of Life Care Scale (NHEOLC) was developed through a systematic evaluation of existing tools combined with an iterative process of consultation with group experts in end of life care in long term care settings. A total of 307 health care professionals agreed to participate in the study and completed the scale. The scale was grouped in six dimensions: physical, psychological aspects and spiritual aspects of care, family care, bereavement, and patient/family preferences management. The results suggest an adequate factorial structure of the scale and good internal consistency for the total score and the subscales. In addition, the results showed significant differences depending on the size of the nursing home, the category of health professionals, and their own perceptions of his work regarding end-of-life care. Copyright © 2017 Elsevier Inc. All rights reserved.

  8. District nurse consultations with vulnerable patients over wishes for end-of-life care.

    Science.gov (United States)

    Griffith, Richard

    2014-09-01

    As part of an enhanced service under NHS England's Transforming Primary Care initiative, GP practices will begin to proactively case manage patients at risk of unplanned hospital admissions. At the centre of this service is a case management register and personalised care plan that indicates the patient's wishes for future care. The initiative, and particularly the asking of questions about 'do not attempt resuscitation' orders and end-of-life care, has drawn the criticism of district nurses who are frequently asked to complete the personalised care plans with patients-many of whom they have not previously met. This article considers whether the template for personal care plans is reflective of the law on consent and, in particular, the Mental Capacity Act 2005.

  9. Inequalities in End-of-Life Care for Colorectal Cancer Patients in Nova Scotia, Canada

    Science.gov (United States)

    Asada, Yukiko; Burge, Fred; Johnston, Grace W.; Urquhart, Robin

    2013-01-01

    Access to high-quality end-of-life (EOL) care is critical for all those with incurable cancer. The objective of this study was to examine inequalities in access to, and quality of, EOL care by assessing registration in a palliative care program, emergency room visits in the last 30 days of life, and location of death among individuals who died of colorectal cancer in Nova Scotia, Canada, between 2001 and 2008. We used population-based linked administrative data and performed multivariate logistic regression models to assess the association between socio-economic, geographic, and demographic factors and outcomes related to access to, and quality of, EOL care (n=1,201). This study demonstrates that although access to, and quality of, EOL care appears to have improved, there remain significant inequalities throughout the population. Of primary concern is the variation in access to, and quality of, EOL care based on geographic location of residence and patient age. PMID:22860381

  10. Measuring end-of-life care and outcomes in residential care/assisted living and nursing homes

    NARCIS (Netherlands)

    Zimmerman, S.; Cohen, L.; Steen, J.T. van der; Reed, D.; Soest-Poortvliet, M.C. van; Hanson, L.C.; Sloane, P.D.

    2015-01-01

    CONTEXT: The two primary residential options for older adults who require supportive care are nursing homes and residential care/assisted living. More than one-quarter of all deaths in the U.S. occur in these settings. Although the information available on end of life in long-term care has been

  11. Measuring End-of-Life Care and Outcomes in Residential Care/Assisted Living and Nursing Homes

    NARCIS (Netherlands)

    Zimmerman, S.; Cohen, L.; van der Steen, J.T.; Reed, D.; van Soest-Poortvliet, M.C.; Hanson, L.C.; Sloane, P.D.

    2015-01-01

    Context The two primary residential options for older adults who require supportive care are nursing homes and residential care/assisted living. More than one-quarter of all deaths in the U.S. occur in these settings. Although the information available on end of life in long-term care has been

  12. 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.

  13. Health care professionals’ comprehension of the legal status of end-of-life practices in Quebec

    Science.gov (United States)

    Marcoux, Isabelle; Boivin, Antoine; Arsenault, Claude; Toupin, Mélanie; Youssef, Joseph

    2015-01-01

    Abstract Objective To determine health care professionals’ understanding of the current legal status of different end-of-life practices and their future legal status if medical aid in dying were legalized, and to identify factors associated with misunderstanding surrounding the current legal status. Design Cross-sectional survey using 6 clinical scenarios developed from a validated European questionnaire and from a validated classification of end-of-life practices. Setting Quebec. Participants Health care professionals (physicians and nurses). Main outcome measures Perceptions of the current legal status of the given scenarios and whether or not the practices would be authorized in the event that medical aid in dying were legalized. Results Among the respondents (n = 271, response rate 88.0%), more than 98% knew that the administration or prescription of lethal medication was currently illegal. However, 45.8% wrongly thought that it was not permitted to withdraw a potentially life-prolonging treatment at the patient’s request, and this misconception was more common among nurses and professionals who had received their diplomas longer ago. Only 39.5% believed that, in the event that medical aid in dying were legalized, the use of lethal medication would be permitted at the patient’s request, and 34.6% believed they would be able to give such medication to an incompetent patient upon a relative’s request. Conclusion Health care professionals knew which medical practices were illegal, but some wrongly believed that current permitted practices were not legal. There were various interpretations of what would or would not be allowed if medical aid in dying were legalized. Education on the clinical implications of end-of-life practice legislation should be promoted. PMID:26052600

  14. Prognosis terminal: truth-telling in the context of end-of-life care.

    Science.gov (United States)

    Rich, Ben A

    2014-04-01

    Recent contributions to the medical literature have raised yet again the issue of whether the term "terminal" is an intelligible one and whether there is a consensus view of its meaning that is sufficient to justify or even require its use in discussing end-of-life care and treatment options with patients. Following a review of the history and development of informed consent, persistent problems with the communication of prognosis and the breaking of bad news are analyzed. The author argues that candid but compassionate communication between physicians and patients about prognosis is essential to informed decisions about both disease-directed (curative) and palliative therapies.

  15. Families' perceptions of end-of-life care in Veterans Affairs versus non-Veterans Affairs facilities.

    Science.gov (United States)

    Lu, Hien; Trancik, Emily; Bailey, F Amos; Ritchie, Christine; Rosenfeld, Kenneth; Shreve, Scott; Furman, Christian; Smith, Dawn; Wolff, Catherine; Casarett, David

    2010-08-01

    The Veterans Affairs (VA) has made significant investments in care for veterans. However, it is not known whether these investments have produced improvements in end-of-life care in the VA compared to other settings. Therefore, the goal of this study was to compare families' perceptions of end-of-life care among patients who died in VA and non-VA facilities. Retrospective 32-item telephone surveys were conducted with family members of patients who died in VA and non-VA facilities. Five Veterans Affairs medical centers and their affiliated nursing homes and outpatient clinics. Patients were eligible if they received any care from a participating VA facility in the last month of life and if they died in an inpatient setting. One family member per patient completed the survey. In bivariate analysis, patients who died in VA facilities (n = 520) had higher mean satisfaction scores compared to those who died in non-VA facilities (n = 89; 59 versus 51; rank sum test p = 0.002). After adjusting for medical center, the overall score was still significantly higher for those dying in the VA (beta = 0.07; confidence interval [CI] = 0.02-0.11; p = 0.004), as was the domain measuring care around the time of death (beta = 0.11; CI = 0.04-0.17; p = 0.001). Families of patients who died in VA facilities rated care as being better than did families of those who died in non-VA facilities. These results provide preliminary evidence that the VA's investment in end-of-life care has contributed to improvements in care in VA facilities compared to non-VA facilities.

  16. 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/

  17. Patient Preferences versus Family Physicians' Perceptions Regarding the Place of End-of-Life Care and Death: A Nationwide Study in Taiwan.

    Science.gov (United States)

    Shih, Chih-Yuan; Hu, Wen-Yu; Cheng, Shao-Yi; Yao, Chien-An; Chen, Ching-Yu; Lin, Yen-Chun; Chiu, Tai-Yuan

    2015-07-01

    Enabling people to die in their preferred place is important for providing high-quality end-of-life care. The study objective was to explore patients' preferences regarding the place of end-of-life care and death and to compare these preferences with the perceptions of their family physicians. This cross-sectional study used stratified random sampling, surveying 400 registered patients and 200 of their family physicians nationwide, with a five-part, structured, self-report questionnaire. Of the selected population, 310 patients (response rate 77.5%) and 169 physicians (response rate 84.5%) responded. Regarding the preferred place for end-of-life care, most of the patients would choose to receive care at home (60.6%) if home care services were available. Additionally, home was the most frequently preferred (66.5%) place of death. The family physicians' survey showed that a higher proportion of physicians selected home as the preferred place for end-of-life care and death (71.6% and 87.2%, respectively). The results of logistic regression analysis showed that patients younger than 50 years of age who believed in Chinese folk religion and who resided in a rural area were more likely to prefer to die at home. The most commonly preferred place for end-of-life care and death is the patient's home. Establishing a community-based palliative care system should be encouraged to allow more individuals to die in their preferred locations. There were discrepancies in the preferred place of end-of-life care and death between the patients' preferences and their family physicians' perceptions. More effective physician-patient communication regarding end-of-life care is needed.

  18. Blended e-learning and end of life care in nursing homes: a small-scale mixed-methods case study

    National Research Council Canada - National Science Library

    Farrington, Conor Jt

    2014-01-01

    .... staff with relatively infrequent contact with end of life care) has been delivered across several English counties with the aim of improving end of life care in nursing and residential care homes...

  19. Care at the Very End-of-Life: Dying Cancer Patients and Their Chosen Family’s Needs

    Directory of Open Access Journals (Sweden)

    Katherine Clark

    2017-01-01

    Full Text Available The majority of cancer deaths in countries such as Australia are predictable and most likely to occur in hospital. Despite this, hospitals remain challenged by providing the best care for this fragile cohort, often believing that care with palliative intent at the very end-of-life is not the best approach to care. Given the importance that dying patients place on excellent symptom control, failing to provide good end-of-life care is likely to be contrary to the wishes of the imminently dying patient and their family. This becomes even more significant when the impact of care on the bereavement outcomes of families is considered. Given the rising numbers of predicable hospital deaths, an urgent need to address this exists, requiring health professionals to be cognisant of specific care domains already identified as significant for both patients and those closest to them in knowledge, care and affection. This non-systematic review’s aims are to summarise the symptoms most feared by people imminently facing death which is defined as the terminal phase of life, where death is imminent and likely to occur within hours to days, or very occasionally, weeks. Further, this paper will explore the incidence and management of problems that may affect the dying person which are most feared by their family. The final section of this work includes a brief discussion of the most significant issues that require attention.

  20. Care at the Very End-of-Life: Dying Cancer Patients and Their Chosen Family’s Needs

    Science.gov (United States)

    Clark, Katherine

    2017-01-01

    The majority of cancer deaths in countries such as Australia are predictable and most likely to occur in hospital. Despite this, hospitals remain challenged by providing the best care for this fragile cohort, often believing that care with palliative intent at the very end-of-life is not the best approach to care. Given the importance that dying patients place on excellent symptom control, failing to provide good end-of-life care is likely to be contrary to the wishes of the imminently dying patient and their family. This becomes even more significant when the impact of care on the bereavement outcomes of families is considered. Given the rising numbers of predicable hospital deaths, an urgent need to address this exists, requiring health professionals to be cognisant of specific care domains already identified as significant for both patients and those closest to them in knowledge, care and affection. This non-systematic review’s aims are to summarise the symptoms most feared by people imminently facing death which is defined as the terminal phase of life, where death is imminent and likely to occur within hours to days, or very occasionally, weeks. Further, this paper will explore the incidence and management of problems that may affect the dying person which are most feared by their family. The final section of this work includes a brief discussion of the most significant issues that require attention. PMID:28125017

  1. 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.

  2. 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.

  3. 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.

  4. Community nurses' experiences of ethical problems in end-of-life care in the patient's own home.

    Science.gov (United States)

    Karlsson, Margareta; Karlsson, Christina; Barbosa da Silva, António; Berggren, Ingela; Söderlund, Maud

    2013-12-01

    To gain a deeper understanding of community nurses' experiences of ethical problems in end-of-life care in the patient's own home. Ten female nurses from five different communities with experience of end-of-life care were interviewed. A hermeneutic approach inspired by Gadamer was used to analyse the qualitative data from the interviews. In the first step of interpretation, two themes emerged: Uncomfortable feelings and Lack of cooperation and in the second step, one theme Lack of security emerged. Finally, the overall interpretation revealed the theme Feelings of loss of control in end-of-life care in the patient's own home. The nurses exhibited commitment and a desire to do good when caring for patients in the end-of-life phase, even if they sometimes experienced feelings of lack of control. This implies that, when confronted with care-related issues, they have the power to both act and react. This study aimed to increase understanding of ethical problems that arise in end-of-life care in the patient's own home and revealed the need to take the patients', relatives' and nurses' perspectives on health and suffering into consideration to ensure good end-of-life home care. © 2012 The Authors Scandinavian Journal of Caring Sciences © 2012 Nordic College of Caring Science.

  5. Trends in End-of-Life Care in Pediatric Hematology, Oncology, and Stem Cell Transplant Patients.

    Science.gov (United States)

    Brock, Katharine E; Steineck, Angela; Twist, Clare J

    2016-03-01

    Decisions about end-of-life care may be influenced by cultural and disease-specific features. We evaluated associations of demographic variables (race, ethnicity, language, religion, and diagnosis) with end-of-life characteristics (Phase I enrollment, do-not-resuscitate (DNR) orders, hospice utilization, location of death), and trends in palliative care services delivered to pediatric hematology, oncology, and stem cell transplant (SCT) patients. In this single-center retrospective cohort study, inclusion criteria were as follows: patients aged 0-35 who died between January 1, 2002 and March 1, 2014, and had been cared for in the pediatric hematology, oncology, and SCT divisions. The era of 2002-2014 was divided into quartiles to assess trends over time. Of the 445 included patients, 64% of patients had relapsed disease, 45% were enrolled in hospice, and 16% had received palliative care consultation. Patients with brain or solid tumors enrolled in hospice (P patients with leukemia/lymphoma (P Patients who received Phase I therapy or identified as Christian/Catholic religion enrolled in hospice more frequently (P patient deaths were analyzed over quartiles, the frequency of DNR orders (P = 0.02) and palliative care consultation (P = 0.04) increased over time. Hospice enrollment, location of death, and Phase I trial enrollment did not change significantly. Despite increases in palliative care consultation and DNR orders over time, utilization remains suboptimal. No increase in hospice enrollment or shift in death location was observed. These data will help target future initiatives to achieve earlier discussions of goals of care and improved palliative care for all patients. © 2015 Wiley Periodicals, Inc.

  6. The Durban World Congress Ethics Round Table IV: health care professional end-of-life decision making.

    Science.gov (United States)

    Joynt, Gavin M; Lipman, Jeffrey; Hartog, Christiane; Guidet, Bertrand; Paruk, Fathima; Feldman, Charles; Kissoon, Niranjan; Sprung, Charles L

    2015-04-01

    When terminal illness exists, it is common clinical practice worldwide to withhold (WH) or withdraw (WD) life-sustaining treatments. Systematic documentation of professional opinion and perceived practice similarities and differences may allow recommendations to be developed. Speakers from invited faculty of the World Federation of Societies of Intensive and Critical Care Medicine Congress that took place in Durban (2013), with an interest in ethics, were approached to participate in an ethics round table. Key domains of health care professional end-of-life decision making were defined, explored by discussion, and then questions related to current practice and opinion developed and subsequently answered by round-table participants to establish the presence or absence of agreement. Agreement was established for the desirability for early goal-of-care discussions and discussions between health care professionals to establish health care provider consensus and confirmation of the grounds for WH/WD, before holding formal WH/WD discussions with patients/surrogates. Nurse and other health care professional involvement were common in most but not all countries/regions. Principles and practical triggers for initiating discussions on WH/WD, such as multiorgan failure, predicted short-term survival, and predicted poor neurologic outcome, were identified. There was majority agreement for many but not all statements describing health care professional end-of-life decision making. Copyright © 2014 Elsevier Inc. All rights reserved.

  7. Next of kin's feelings of guilt and shame in end-of-life care.

    Science.gov (United States)

    Andershed, Birgitta; Harstäde, Carina Werkander

    2007-12-01

    In this study the aim was to explore and describe next of kin's feelings of guilt and shame in end-of-life care via secondary analysis of 47 qualitative interviews. In the analysis categories and subcategories emerged which conveyed how the next of kin experienced guilt; not having done or talked enough, being absent at important events or making errors of judgement. Categories conveying feelings of shame were situations where the next of kin felt inferior, was ashamed on behalf of the dying person and when family conflicts became apparent. Receiving help and support in order to make the remaining period as pleasant as possible can facilitate the next of kin's sense of having fulfilled their duties and responsibilities and therein reduce feelings of guilt and shame. It is apparent that these feelings should be taken into account and the next of kin should receive support to increase their well-being during the remaining time in end-of-life care and the grieving period.

  8. Interprofessional, simulation-based training in end of life care communication: a pilot study.

    Science.gov (United States)

    Efstathiou, Nikolaos; Walker, Wendy Marina

    2014-01-01

    This paper reports on the process and outcomes of a study, designed to pilot the use of interprofessional, simulation-based training in end of life care communication. Participants comprised 50 final year medicine, nursing, physiotherapy and pharmacy students. Learning methods included observation of role play and facilitated, interactive group discussion. A Likert scale rating questionnaire was used to evaluate the impact of the learning experience. Evaluation data revealed that students were supportive of interprofessional learning and could recognise its benefits. The results indicated self-perceived improvements in knowledge, skills, confidence and competence when dealing with challenging end of life care communication situations. Comparison of pre- and post-intervention scores revealed a statistically significant positive change in the students' perceptions about their level of knowledge (Z = -5.887, p = 0.000). The reported benefits need to be balanced against design and delivery issues that proved labour and resource intensive. Economic evaluation is worthy of further consideration.

  9. Perceptions of nurses' roles in end-of-life care and organ donation - imposition or obligation?

    Science.gov (United States)

    Crymble, Kim; Fabian, June; Etheredge, Harriet; Gaylard, Petra

    2017-06-30

    South Africa has a rich organ-transplant history, and studies suggest that the SA public supports organ donation. In spite of this, persistently low donor numbers are a significant challenge. This may be due to a lack of contextually appropriate awareness and education, or to barriers to referring patients and families in clinical settings. It may also be due to ad hoc regulations that are not uniformly endorsed or implemented. In this article we present the findings of a study in Johannesburg that explored the attitudes and roles of nurses in end-of-life care and organ donation. A total of 273 nurses participated. Most were female and <50 years old. The majority expressed positive attitudes towards both end-of-life care and organ donation, but there was ambiguity as to whether referring patients and families for these services was within nursing scope of practice. The vast majority of participants noted that they would refer patients themselves if there was a mandatory, nationally endorsed referral policy. These findings have implications for clinical practice and policy, and suggest that the formulation and implementation of robust national guidelines should be a priority. Because nurses would follow such guidelines, this might lead to an increase in donor rates and circumvent some uncertainty regarding referral.

  10. Common or multiple futures for end of life care around the world? Ideas from the 'waiting room of history'.

    Science.gov (United States)

    Zaman, Shahaduz; Inbadas, Hamilton; Whitelaw, Alexander; Clark, David

    2017-01-01

    Around the world there is growing interest in the manner in which care is delivered to people at the end of life. However, there is little unanimity on what constitutes a 'good death' and the appropriate societal responses to the issue of delivering culturally relevant and sustainable forms of end of life care in different settings are not subjects of broad agreement. In this critical conceptual paper we focus on the emerging narratives of global palliative care and offer an assessment of their implications. We relate this to calls to improve end of life care across jurisdictions and settings, attempts to map and grade the development of palliative care provision, and to the emergence of a widely recognised global 'quality of death index'. We consider an alternative approach to framing this debate, drawn from a subaltern and post-colonial studies perspective and suggest that adopting a truly global perspective will require acceptance of the plurality of past and present local problems and issues relating to end of life care, as well as the plural possibilities of how they might be overcome. In that context, we would not aim to universalise or privilege one particular global future for end of life care. Instead of homogenising end of life interventions, we seek to be open to multiple futures for the care of the dying. Copyright © 2016 The Authors. Published by Elsevier Ltd.. All rights reserved.

  11. Easing of suffering in children with cancer at the end of life: is care changing?

    Science.gov (United States)

    Wolfe, Joanne; Hammel, Jim F; Edwards, Kelly E; Duncan, Janet; Comeau, Michael; Breyer, Joanna; Aldridge, Sarah A; Grier, Holcombe E; Berde, Charles; Dussel, Veronica; Weeks, Jane C

    2008-04-01

    In the past decade studies have documented substantial suffering among children dying of cancer, prompting national attention on the quality of end-of-life care and the development of a palliative care service in our institutions. We sought to determine whether national and local efforts have led to changes in patterns of care, advanced care planning, and symptom control among children with cancer at the end of life. Retrospective cohort study from a US tertiary level pediatric institution. Parent survey and chart review data from 119 children who died between 1997 and 2004 (follow-up cohort) were compared with 102 children who died between 1990 and 1997 (baseline cohort). In the follow-up cohort, hospice discussions occurred more often (76% v 54%; adjusted risk difference [RD], 22%; P < .001) and earlier (adjusted geometric mean 52 days v 28 days before death; P = .002) compared with the baseline cohort. Do-not-resuscitate orders were also documented earlier (18 v 12 days; P = .031). Deaths in the intensive care unit or other hospitals decreased significantly (RD, 16%; P = .024). Parents reported less child suffering from pain (RD, 19%; P = .018) and dyspnea (RD, 21%; P = .020). A larger proportion of parents felt more prepared during the child's last month of life (RD, 29%; P < .001) and at the time of death (RD, 24%; P = .002). Children dying of cancer are currently receiving care that is more consistent with optimal palliative care and according to parents, are experiencing less suffering. With ongoing growth of the field of hospice and palliative medicine, further advancements are likely.

  12. 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

    Directory of Open Access Journals (Sweden)

    McNeil Ryan

    2012-05-01

    Full Text Available Abstract Background 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. Methods 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. Results 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. Conclusions 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.

  13. 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.

  14. [End-of-life and palliative care: the experience of the Tuscany region, Italy].

    Science.gov (United States)

    Rodella, Stefania; Serraino, Diego; Benocci, Sara; Cislaghi, Cesare

    2007-01-01

    This paper summarizes a research of the Regional Agency for Health in Tuscany (Florence, Italy) on end-of-life and palliative care. The evolving concepts and definitions at the international level as well as some relevant experiences of research and intervention are reported. The national context is described through recent legislation and the state-of-the art of health services. The experience of Tuscany is discussed with respect to regulation, health services and significant experiences in epidemiological research, education, and cultural promotion. The population needs for palliative care are estimated on the basis of mortality rates and hospital admissions in the last year of life. Seventy-five percent of people dying in 2003 had at least one hospital admission in the 12 previous months, while 42.1 percent of deaths occurred in hospital (more than half of them in Internal Medicine or Intensive Care Units).

  15. Does nonresponse bias the results of retrospective surveys of end-of-life care?

    Science.gov (United States)

    Casarett, David; Smith, Dawn; Breslin, Sean; Richardson, Diane

    2010-12-01

    To evaluate the effect of nonresponse bias on reports of the quality of end-of-life care that older adults receive. Nationwide retrospective survey of end-of-life care. Sixty-two Veterans Affairs Medical Centers. Patients were eligible if they died in a participating facility. One family member per patient was selected from medical records and invited to participate. The telephone survey included 14 items describing important aspects of the patient's care in the last month of life. Scores (0-100) reflect the percentage of items for which the family member reported that the patient received the best possible care, and a global item defined the proportion of families who said the patient received "excellent" care. To examine the effect of nonresponse bias, a model was created to predict the likelihood of response based on patient and family characteristics; then this model was used to apply weights that were equivalent to the inverse of the probability of response for that individual. Interviews were completed with family members of 3,897 of 7,110 patients (55%). Once results were weighted to account for nonresponse bias, the change in mean individual scores was 2% of families reporting "excellent" care. Of the 62 facilities in the sample, the scores of only 19 facilities (31%) changed more than 1% in either direction, and only 10 (16%) changed more than 2%. Although nonresponse bias is a theoretical concern, it does not appear to have a significant effect on the facility-level results of this retrospective family survey. © 2010, Copyright the Authors. Journal compilation © 2010, The American Geriatrics Society.

  16. Nurses' identification of important yet under-utilized end-of-life care skills for patients with life-limiting or terminal illnesses.

    Science.gov (United States)

    Reinke, Lynn F; Shannon, Sarah E; Engelberg, Ruth; Dotolo, Danae; Silvestri, Gerard A; Curtis, J Randall

    2010-06-01

    This study was designed to identify nurses' perspectives on nursing skills that are important yet under-utilized in end-of-life care. A 45-item survey was administered to nurses (n = 717) in four U.S. states with a response rate of 79%. We identified skills that were endorsed by more than 60% of nurses as extremely important and also endorsed as not currently practiced by more than 25% of nurses. We used Chi square statistics to examine professional characteristics associated with ratings of end-of-life care skills including practice settings, years of experience, and end-of-life care education. Content analysis was used to examine nurses' responses to open-ended questions. Nineteen items were endorsed as extremely important and also ranked as under-utilized. These end-of-life care skills included communication skills, symptom management competencies especially those concerning anxiety and depression, and issues related to patient-centered care systems. Four complementary themes emerged from qualitative analysis of nurses' comments, which supported the quantitative findings. This study provides a summary of skills nurses feel are important and under-utilized in their care of patients with life-limiting illnesses. The findings support the need to target both nursing education and healthcare system interventions to improve the use of practical end-of-life care skills by nurses with a focus on communication and symptom management skills.

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

    Science.gov (United States)

    White, N

    2017-09-01

    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. 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. 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. 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. Crown Copyright © 2017. Published by Elsevier Ltd. All rights reserved.

  18. The social stratification of older adults' preparations for end-of-life health care.

    Science.gov (United States)

    Carr, Deborah

    2012-09-01

    I use data from the Wisconsin Longitudinal Study (n = 4,971) to evaluate the extent to which socioeconomic status affects three health-related (living will, durable power of attorney for health care, and discussions) and one financial (will) component of end-of-life planning. Net worth is positively associated with all four types of planning, after demographic, health, and psychological characteristics are controlled. Low rates of health-related planning among persons with low or negative assets are largely accounted for by the fact that they are less likely to execute a will, an action that triggers health-related preparations. Rates of health-related planning alone are higher among recently hospitalized persons, whereas financial planning only is more commonly done by homeowners and those with richer assets. The results suggest that economically advantaged persons engage in end-of-life planning as a two-pronged strategy entailing financial and health-related preparations. Implications for health policy, practice, and theory are discussed.

  19. End-of-Life Palliative Care Practices and Referrals in Uganda.

    Science.gov (United States)

    Low, Daniel; Merkel, Emily C; Menon, Manoj; Loggers, Elizabeth; Ddungu, Henry; Leng, Mhoira; Namukwaya, Elizabeth; Casper, Corey

    2017-10-23

    While early involvement and integration of palliative care with oncology can positively impact quality of life and survival of patients with advanced cancer, there is a dearth of information regarding this integration in sub-Saharan Africa. We sought to describe the rate and factors predicting specialist palliative referrals among cancer patients in Uganda. We examined the rate of referrals of cancer patients to palliative specialists via a chart review, while also surveying and interviewing doctors at the Uganda Cancer Institute (UCI) about their approaches to palliative care. All adult patients at the UCI who died in a 20-month interval from 2014 to 2015. All UCI doctors were approached for the survey and 25 (96%) participated. Seven of these doctors were also individually interviewed. Number of referrals to palliative specialists and qualitative responses to questions about end-of-life care management. Sixty-six (11.1%) of 595 patients were referred to palliative care specialists. Patients with worse ECOG performance statuses were more likely to be referred to palliative specialists (odds ratio 2.23, p = 0.03); no other factors were predictive of a referral. Median number of days lived after referral was 5 days (interquartile range 2-13). Doctors explained the low referral rate and short life expectancy after referral by limited palliative resources and a reticence to have end-of-life management conversations with patients due to cultural taboos. Despite recognized benefits of palliative collaboration, doctors at the UCI seldom refer patients to palliative care specialists due to limited staffing, cultural barriers, and difficult interservice communication.

  20. Respiratory Therapists' Experiences and Attitudes Regarding Terminal Extubations and End-of-Life Care.

    Science.gov (United States)

    Grandhige, Anjali P; Timmer, Marjorie; O'Neill, Michael J; Binney, Zachary O; Quest, Tammie E

    2016-07-01

    Respiratory therapists (RTs) routinely care for patients with life-limiting illnesses and in some hospitals are responsible for terminal extubations. Data on how such experiences affect RTs are scarce. The objective of this work was to survey RTs at 2 academic medical centers about their experiences caring for patients with terminal extubations. An online survey was distributed to the hospitals' RTs. Survey data included demographics and experiences with end-of-life care and terminal extubations. The survey was derived from previously published questionnaires plus input from hospital RT leaders. Sixty-five of 173 RTs (37.6%) responded. Of these, 42.4% were ≥50 y old, and 62.7% were female. 20.3% had ≤5 y experience; 52.5% had ≥16 y. 93.8% self-reported being involved in at least one terminal extubation; of those, 36.1% reported performing ≥20. Nearly half (47.5%) wanted to be involved in family meetings discussing terminal extubations, but just 6.6% were frequently involved. Only 32.3% felt that they received adequate education regarding terminal illness in RT school; 32.3% reported gathering this knowledge while working. 60.0% wanted more formal education around terminal patient care. 27.9% reported sometimes being uncomfortable with performing a terminal extubation; most of these rarely felt that they had the option not to perform the extubation. RTs are rarely involved in end-of-life discussions despite a desire to be, and they experience situations that generate discomfort. There is demand for more formal RT training around care for terminal patients. Clinical protocols that involve RTs in meetings before ventilator withdrawal should be considered. Copyright © 2016 by Daedalus Enterprises.

  1. 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.

  2. Dying in the hospital setting: A meta-synthesis identifying the elements of end-of-life care that patients and their families describe as being important.

    Science.gov (United States)

    Virdun, Claudia; Luckett, Tim; Lorenz, Karl; Davidson, Patricia M; Phillips, Jane

    2017-07-01

    Despite most expected deaths occurring in hospital, optimal end-of-life care is not available for all in this setting. To gain a richer and deeper understanding of elements of end-of-life care that consumers consider most important within the hospital setting. A meta-synthesis. A systematic search of Academic Search Complete, AMED, CINAHL, MEDLINE, EMBASE, PsycINFO, PubMed, Google, Google Scholar and CareSearch for qualitative studies published between 1990 and April 2015 reporting statements by consumers regarding important elements of end-of-life hospital care. Study quality was appraised by two independent researchers using an established checklist. A three-stage synthesis approach focusing on consumer quotes, rather than primary author themes, was adopted for this review. Of 1922 articles, 16 met the inclusion criteria providing patient and family data for analysis. Synthesis yielded 7 patient and 10 family themes including 6 common themes: (1) expert care, (2) effective communication and shared decision-making, (3) respectful and compassionate care, (4) adequate environment for care, (5) family involvement and (6) financial affairs. Maintenance of sense of self was the additional patient theme, while the four additional family themes were as follows: (1) maintenance of patient safety, (2) preparation for death, (3) care extending to the family after patient death and (4) enabling patient choice at the end of life. Consumer narratives help to provide a clearer direction as to what is important for hospital end-of-life care. Systems are needed to enable optimal end-of-life care, in accordance with consumer priorities, and embedded into routine hospital care.

  3. Directly observed patient-physician discussions in palliative and end-of-life care: a systematic review of the literature.

    Science.gov (United States)

    Fine, Elizabeth; Reid, M Carrington; Shengelia, Rouzi; Adelman, Ronald D

    2010-05-01

    To review studies that used direct observation (i.e., videotaping or audiotaping) methods in palliative/end-of-life care communication research. Descriptive thematic analysis. Multinational studies were conducted in both the outpatient and inpatient setting. Extensive bibliographic searches (January 1, 1998 to July 31, 2009) of English-language literature involving physician-patient (or physician-family) interactions were conducted and augmented by reviews of reference listings. Three investigators independently abstracted key information from each article. Of the 20 retained articles, most enrolled young-old participants (mean age, 60 years) who were white and had a cancer diagnosis. Patient/family participation rates ranged from 68% to 89% demonstrating feasibility of this approach when studying palliative/end-of-life care communication issues. Four common themes were identified: (1) physicians focus on medical/technical and avoid emotional/quality of life issues; (2) sensitive topics are perceived by physicians to take longer to discuss and often do take longer to discuss; (3) physicians dominate discussions; and (4) patient/family satisfaction is associated with supportive physician behaviors. This study demonstrates that direct observation methods can be feasibly used when studying physician-patient/physician-family communication in palliative/end-of-life care, but few investigations have utilized this approach. This article highlights areas that need improvement, including physicians' ability to address patient/family emotional issues and provide what patients and families find most satisfying (participation and support). A particular focus on older patients and patients with end-stage or late-stage chronic (noncancer) illness, the adaptation/application of existing communication measurement tools to capture palliative care communication issues, and development of corresponding outcome measures to assess impact is now needed.

  4. End-of-life care in the intensive care unit: the Irish Ethicus data.

    Science.gov (United States)

    Collins, Niamh; Phelan, Dermot; Marsh, Brian; Sprung, Charles L

    2006-12-01

    To study the frequency, rationale and process for withholding (WH) and withdrawing (WD) life-sustaining therapies in intensive care patients in Ireland. Prospective, observational study, comprising a subset of the European Ethicus Study. 122 patients who died or who had life-sustaining therapies limited in the ICU of a university hospital, 1 September 1999 to 30 June 2000. An end-of-life (EOL) treatment decision was made for 85/122 patients (69%). Forty-five (36%) had therapy withheld, 40 (33%) had it withdrawn, 26 (21%) had unsuccessful cardiopulmonary resuscitation, and 11 (10%) suffered brain death. The median time from ICU admission to death was 4.0 days for WH patients and 2.9 days for WD patients (range, 10 minutes to 123 days). The discussion to limit therapy was initiated by the ICU doctor in 50 cases (59%), and involved families in 66 cases (78%). Families initiated 9% of EOL discussions. Nursing staff were involved in 98% of decisions. No patients were mentally competent, but their wishes were known in 28% of cases. The primary reason for limiting life-sustaining therapy was that the patient was unresponsive to maximum therapy (68% of patients). An EOL decision was made every 55 hours during "office hours" and every 120 hours during "on-call" working hours. Withholding was more frequent than withdrawing during "on call" periods. The frequency of withdrawal or withholding of therapy in this Irish ICU is in line with current international practice. The time to EOL decision-making is variable and relatively short compared with that in the United States, but similar to that in Europe. Clinicians are the primary initiators of the EOL decision in Ireland, with little patient involvement. Family members are more likely to initiate an EOL decision than in Europe. EOL decisions were usually made during "routine" working hours after significant consultation with all groups.

  5. 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.

  6. 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

  7. 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.

  8. The impact of a 'Critical Moments' workshop on undergraduate nursing students' attitudes to caring for patients at the end of life: an evaluation.

    Science.gov (United States)

    Bailey, Cara; Hewison, Alistair

    2014-12-01

    To evaluate the impact of an educational workshop on nursing students' attitudes to caring for dying patients. The quality of end-of-life care education provided in preregistration nursing programmes has been criticised. The lack of attention to the emotional content results in nursing students feeling ill-prepared to care for the dying and bereaved. This article reports the findings of a study conducted to evaluate the impact of an educational workshop on undergraduate nursing students' attitudes to caring for patients at the end of life. A pre- and postintervention survey was used to determine nursing students' attitudes and feelings concerning end-of-life care prior to and following their involvement in an educational workshop. Third-year undergraduate nursing students completed two questionnaires incorporating the Frommelt Attitude Toward Care of the Dying Scale, before and after attending a 'Critical Moments' workshop. The data revealed a statistically significant increase in positive attitudes to end-of-life care amongst the respondents. Free text responses confirmed the development of positive attitudes and indicated that the workshop was regarded as a valuable learning opportunity. Workshops that use case studies based on 'real-life' episodes of end-of-life care can provide an effective learning opportunity that significantly improves the attitudes of nursing students to caring for the dying. Identifying emotional labour is an important stage in the development of emotionally intelligent nurses. It may reduce the risk of occupational stress, burnout and potential withdrawal from nursing practice in the longer term. Timing, expert facilitation and peer support are important considerations for an educational workshop that aims to enable nurses to remain healthy whilst delivering high-quality care to patients and their relatives near the end of life. © 2014 John Wiley & Sons Ltd.

  9. An evaluation of the impact of the Gold Standards Framework on collaboration in end-of-life care in nursing homes. A qualitative and quantitative evaluation.

    Science.gov (United States)

    Badger, Frances; Plumridge, Gillian; Hewison, Alistair; Shaw, Karen L; Thomas, Keri; Clifford, Collette

    2012-05-01

    In the United Kingdom approaching 20% of people aged 85 years and over live in care homes and most will die there. Improving end-of-life care is a government health priority and homes may work with primary care staff and specialist palliative practitioners to provide comprehensive end-of-life care. Consequently effective collaboration between care home and health service practitioners is vital to ensure high quality end-of-life care. To evaluate the impact of a training programme to improve end-of-life care in nursing homes, on collaboration between nursing home staff and other health practitioners. Evaluation using survey methods and qualitative case studies. All 95 nursing homes in the first national 'Gold Standards Framework in Care Homes' programme in England were invited to participate in the evaluation. A survey of homes' characteristics, the approaches to end-of-life care, and liaison with other services, was completed pre and post programme implementation. Case studies were conducted in a sub-sample of 10 homes to provide important context and depth to the evaluation. Pre and post surveys were returned by 49 (52%) homes. Improved collaborations as a result of the programme were anticipated by 31% of managers. Challenges to collaboration included working with large numbers of general practitioners, out-of-hours services and access to specialist practitioners. Improved collaborations between home staff and health service practitioners were identified by 33% of managers as one of the main programme outcomes. Staff reported increased knowledge of end-of-life care, and enhanced confidence, which in turn resulted in improved communication and collaboration. Post-programme, staff felt more confident initiating contact and discussing residents' end-of-life care with general practitioners and those working in specialist palliative care services. The Gold Standards Framework in Care Homes programme can contribute towards end-of-life care by helping to improve the

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

    Science.gov (United States)

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

    2017-04-01

    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 overlooked in evaluations. Without information on the activities and expenditures involved in informal care-giving, it is impossible to provide an accurate assessment of carers' contribution to end-of-life care. The aim of this study was to investigate the contributions and expenditure of informal, family care-giving in end-of-life cancer care. A national census survey of English cancer carers was conducted. Survey packs were mailed to 5271 people who registered the death of a relative to cancer during 1-16 May 2015. Data were collected on decedents' health and situation, care support given, financial expenditure resulting from care, carer well-being and general background information. In all, 1504 completed surveys were returned (28.5%). Over 90% of respondents reported spending time on care-giving in the last 3 months of the decedent's life, contributing a median 69 h 30 min of care-giving each week. Those who reported details of expenditure (72.5%) spent a median £370 in the last 3 months of the decedent's life. Carers contribute a great deal of time and money for day-to-day support and care of patients. This study has yielded a unique, population-level data set of end-of-life care-giving and future analyses will provide estimates of the economic value of family care-givers' contributions.

  11. Advance care planning and end-of-life care in a network of rural Western Australian hospitals.

    Science.gov (United States)

    Auret, Kirsten; Sinclair, Craig; Averill, Barbara; Evans, Sharon

    2015-08-01

    To provide a current perspective on end-of-life (EOL) care in regional Western Australia, with a particular focus on the final admission prior to death and the presence of documented advance care planning (ACP). Retrospective medical notes audit. One regional hospital (including colocated hospice) and four small rural hospitals in the Great Southern region of Western Australia. Ninety recently deceased patients, who died in hospitals in the region. Fifty consecutive patients from the regional hospital and 10 consecutive patients from each of the four rural hospitals were included in the audit. A retrospective medical notes audit was undertaken. A 94-item audit tool assessed patient demographics, primary diagnosis, family support, status on admission and presence of documented ACP. Detailed items described the clinical care delivered during the final admission, including communication with family, referral to palliative care, transfers, medical investigations, medical treatments and use of EOL care pathways. Fifty-two per cent were women; median age was 82 years old. Forty per cent died of malignancy. Median length of stay was 7 days. Thirty-nine per cent had formal or informal ACP documented. Rural hospitals performed comparably with the regional hospital on all measures. This study provides benchmarking information that can assist other rural hospitals and suggests ongoing work on optimal methods of measuring quality in EOL care. © 2015 National Rural Health Alliance Inc.

  12. 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

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

    Science.gov (United States)

    Candrian, Carey; Tate, Channing; Broadfoot, Kirsten; Tsantes, Alexandra; Matlock, Daniel; Kutner, Jean

    2017-01-01

    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 choice patients make

  14. Beliefs, death, anxiety, denial, and treatment preferences in end-of-life care: a comparison of social work students, community residents, and medical students.

    Science.gov (United States)

    Reese, Dona J; Chan, Cecilia L W; Perry, David C; Wiersgalla, Diane; Schlinger, Jennifer M

    2005-01-01

    This study examined cultural and religious beliefs, death anxiety, denial, and medical treatment preferences in end-of-life care in a sample of social work students, community residents, and medical students in a mid-western city of 49,000. Results indicated that most social work students, community residents, and medical students preferred palliative as opposed to life-prolonging care during terminal illness. The three groups differed in cultural and religious beliefs and all three reported a moderate amount of death anxiety. Students reported less denial of terminality than community residents. Implications for personal and professional preparation to provide end-of-life care are discussed.

  15. Direct Engagement With Communities and Interprofessional Learning to Factor Culture Into End-of-Life Health Care Delivery.

    Science.gov (United States)

    Boucher, Nathan A

    2016-06-01

    Aging patients with advanced or terminal illnesses or at the end of their lives become highly vulnerable when their cultural needs-in terms of ethnic habits, religious beliefs, and language-are unmet. Cultural diversity should be taken into account during palliative care delivery (i.e., noncurative, supportive care during advanced illness or at the end of life). Providers and systems deliver disparate palliative care to diverse patients. I present 2 strategies to improve how culturally diverse populations are served during advanced illness: (1) health service provider assessment of local populations to understand service populations' cultural needs and guide services and policy; and (2) interprofessional education to improve multicultural understanding among the health care workforce.

  16. 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.

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

    Directory of Open Access Journals (Sweden)

    Ruijs Cees DM

    2012-08-01

    Full Text Available Abstract 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 cared for in primary care. Methods Forty four general practitioners recruited end-of-life cancer patients with an estimated life expectancy of half a year or shorter. The inclusion period was three years, follow-up lasted one additional year. Practices were monitored bimonthly to identify new cases. Unbearable aspects in five domains and overall unbearable suffering were quantitatively assessed (5-point scale through patient interviews every two months with a comprehensive instrument. Scores of 4 (serious or 5 (hardly can be worse were defined unbearable. The last interviews before death were analyzed. Sources providing strength to bear suffering were identified through additional open-ended questions. Results Seventy six out of 148 patients (51% requested to participate consented; the attrition rate was 8%, while 8% were alive at the end of follow-up. Sixty four patients were followed up until death; in 60 patients interviews were complete. Overall unbearable suffering occurred in 28%. A mean of 18 unbearable aspects was present in patients with serious (score 4 overall unbearable suffering. Overall, half of the unbearable aspects involved the domain of traditional medical symptoms. The most frequent unbearable aspects were weakness, general discomfort, tiredness, pain, loss of appetite and not sleeping well (25%-57%. The other half of the unbearable aspects involved the domains of function, personhood, environment, and nature and prognosis of disease. The most frequent unbearable aspects were impaired activities, feeling dependent, help needed with housekeeping, not being able to do important things, trouble accepting the situation, being

  18. Nurses' perceptions of educational gaps in delivering end-of-life care.

    Science.gov (United States)

    White, Kenneth R; Coyne, Patrick J

    2011-11-01

    To assess end-of-life (EOL) care core competencies deemed most important with corresponding educational needs from oncology nurses and to describe the characteristics of the respondents that are associated with selection of the top-ranked core competencies. Descriptive, cross-sectional study. Mailed and online surveys. 714 members of the Oncology Nursing Society from Georgia, Virginia, Washington, and Wisconsin. Responses to a mailed or e-mailed researcher-developed questionnaire during a six-month period were collated and analyzed. Ranking of EOL care core competencies and perceived gaps in EOL continuing education. Almost all of the respondents indicated that EOL care was a part of their practice and that continuing education was important, but more than half of the respondents had fewer than two hours of continuing education regarding EOL care in the past two years. Twenty-five percent of the respondents do not believe they are adequately prepared to effectively care for a dying patient. Symptom management was the top-rated core competency, consistent across age, education level, practice role, and practice setting. How to talk to patients and families about dying and what comprises palliative care also was selected frequently. Symptom management is the number one core competency, and the quantity and quality of EOL continuing education is inadequate. Educational gaps exist in EOL nursing care. Assessing what nurses believe to be leading EOL core competencies is useful in improving educational curricula along with considering characteristics of nurses when planning EOL educational programs.

  19. Care versus treatment at the end of life for profoundly disabled persons.

    Science.gov (United States)

    Spike, Jeffrey P

    2012-01-01

    Individuals who are profoundly mentally handicapped do not have the capacity to make their own decisions and also do not have a past record of decisions, from when they had capacity, to guide us in making decisions for them. They represent a difficult group, ethically, for surrogate decision making. Here I propose some guidelines, distinguishing between these patients and patients in a persistent vegetative state (PVS). As the life span of patients becomes shorter, or their level of consciousness becomes permanently impaired, the presumption for comfort care should become an imperative, and the standard of evidence to justify any invasive intervention should become higher. For members of this population, who have no more ability to refuse treatment than to consent to it, protection of the vulnerable must mean allowing a peaceful death as well as a comfortable life. Reasonable legal safeguards are also proposed to allow improved end-of-life decisions to be made for this population.

  20. [Attitudes towards euthanasia: The impact of experiencing end-of-life care].

    Science.gov (United States)

    Köhler, Norbert; Brähler, Elmar; Götze, Heide

    2014-01-01

    It is a matter of debate whether euthanasia should be part of medical practice. The current study investigates the attitudes of bereaved family members of cancer patients towards euthanasia. We conducted a survey with 211 people who had recently lost a close relative to cancer. Participants were asked whether euthanasia should be part of medical practice.Two logistic regression models were calculated in order to determine the factors influencing the attitude towards active euthanasia and assisted suicide. About 70% and 75% of the respondents approved active euthanasia and assisted suicide, respectively. Religious denomination and psychological distress had a significant impact on the attitude towards active euthanasia. About 10%of the deceased patients had asked for active euthanasia. There was no difference between bereaved family members and the general population regarding the acceptance of euthanasia. Attitudes towards active euthanasia are associated with psychological distress and shaped by cultural values rather than by the experience of end-of-life care.

  1. 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.

  2. A narrative literature review of the contribution of volunteers in end-of-life care services.

    Science.gov (United States)

    Morris, Sara; Wilmot, Amanda; Hill, Matthew; Ockenden, Nick; Payne, Sheila

    2013-05-01

    Volunteers are integral to the history of hospices and continue to play a vital role. However, economic, policy and demographic challenges in the twenty-first century raise questions about how best to manage this essential resource. This narrative review explores the recent literature on end-of-life care volunteering and reflects upon the issues pertinent to current organisational challenges and opportunities. The parameters of the review were set deliberately wide in order to capture some of the nuances of contemporary volunteer practices. Articles reporting on research or evaluation of adult end-of-life care services (excluding prison services) that use volunteers and were published in English between 2000 and 2011 were included. Seven electronic databases, key journals and grey literature databases. Sixty-eight articles were included in the analysis. The articles were drawn from an international literature, while acknowledging that volunteer roles vary considerably by organisation and/or by country and over time. The majority of articles were small in scale and diverse in methodology, but the same topics repeatedly emerged from both the qualitative and quantitative data. The themes identified were individual volunteer factors (motivation, characteristics of volunteers, stress and coping, role boundaries and value) and organisational factors (recruiting for diversity, support and training and volunteers' place in the system). The tensions involved in negotiating the boundary spaces that volunteers inhabit, informality and regulation, diversity issues and the cultural specificity of community models, are suggested as topics that merit further research and could contribute to the continuing development of the volunteer workforce.

  3. Patients' needs and satisfiers: applying human scale development theory on end-of-life care.

    Science.gov (United States)

    Jorge, Margarita

    2010-09-01

    This review considers how needs-based care models have been recently discussed in the scientific literature and proposes the human scale development (HSD) theory to achieve high-quality care (HQC) at the end-of-life (EOL). Comprehensive needs-based care models have been developed among terminally ill cancer patients focusing mostly on HQC at the EOL. To achieve this goal, the implementation of several assessment tools has triggered discussions regarding alternatives for addressing the multidimensional nature of EOL care. Uncertainty has been revealed on several research limitations such as unclear definitions, lack of knowledge of healthcare professionals, psychometric problems, patient burden and reported unmet needs. However, there is general consensus about the need to uphold EOL interventions on needs-based-holistic models in order to accomplish HQC at the EOL. Patients, families and healthcare professionals become part of a process that aims to embrace a unique 'world': the patients' subjectivity, his or her own needs and resources capable of meeting those needs. During the last years, some interesting research has outlined and discussed principal broad domains that geared needs-based (patient-centered) care models; however, reported 'gaps' between desired and current practice in the provision of care reflected the complexity of human needs, specifically at the EOL. As regarding fundamental human needs, an HSD theory exists and it may contribute to improve HQC at the EOL.

  4. Can art therapy reduce death anxiety and burnout in end-of-life care workers? a quasi-experimental study.

    Science.gov (United States)

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

    2014-05-01

    The need for empathy and the difficulties of coping with mortality when caring for the dying and the bereaved can cause psychological, emotional, and spiritual strain. The aim of this study was to examine the effectiveness of art-therapy-based supervision in reducing burnout and death anxiety among end-of-life care workers in Hong Kong. Through a quasi-experimental design, 69 participants enrolled in a 6-week, 18-hour art-therapy-based supervision group, and another 63 enrolled in a 3-day, 18-hour standard skills-based supervision group (n=132). Pre- and post-intervention assessments were carried out with three outcome measures: the Maslach Burnout Inventory-General Survey, the Five Facet Mindfulness Questionnaire, and the Death Attitude Profile-Revised. The data was analysed using paired sample t-tests. Significant reductions in exhaustion and death anxiety and significant increases in emotional awareness were observed for participants in the art-therapy-based supervision group. This study provides preliminary evidence that art-therapy-based supervision for end-of-life care workers can reduce burnout by enhancing emotional awareness and regulation, fostering meaning-making, and promoting reflection on death.

  5. Transitions between care settings at the end of life in the Netherlands: results from a nationwide study.

    NARCIS (Netherlands)

    Abarshi, E.; Echteld, M.; Block, L. van den; Donker, G.; Deliens, L.; Onwuteaka-Philipsen, B.

    2010-01-01

    Multiple transitions between care settings in the last phase of life could jeopardize continuity of care and overall end-of-life patient care. Using a mortality follow-back study, we examined the nature and prevalence of transitions between Dutch care settings in the last 3 months of life, and

  6. Oncology nurses' perceptions of end-of-life care in a tertiary cancer centre in Qatar.

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    Libo-On, Izette Larraine M; Nashwan, Abdulqadir J

    2017-02-02

    Nurses who work in oncology settings may lack the knowledge and skills required for end-of-life (EoL) care. A clear understanding of nurses' perceptions of EoL care is crucial for the successful improvement of care for terminally ill patients with cancer. Although many studies have underlined nurses' perspectives on EoL care, this is the first such study conducted on oncology nurses in Qatar. This study primarily sought to measure nurses' perceptions of EoL care at the National Center for Cancer Care and Research (NCCCR) in Qatar. A quantitative, cross-sectional, self-reported study. Nurses at the NCCCR reported their perceptions of EoL care using the Frommelt Attitudes Toward Care of the Dying (FATCOD) scale, which consisted of 30 items scored on a five-point Likert scale. Seventy-eight nurses working in oncology settings completed the tool. Approximately one third (33-35%) of the participants had positive perceptions of EoL care. The majority (67%) of the participants were uncertain or ambivalent regarding EoL events and situations. There was no significant relationship between the participants' profiles and their perceptions of EoL care. However, very few of them had completed educational courses in death and dying. Nurses have an important impact on EoL care, and continuous education is necessary to improve their confidence when they work with dying patients and their families. An in-house programme to help nurses cope with compassionate exhaustion and humanistic and relational care is highly recommended.

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

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    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

  8. End-of-life care in the intensive care unit: the perceived barriers, supports, and changes needed

    Directory of Open Access Journals (Sweden)

    Emir Festic

    2010-11-01

    Full Text Available Objective. To identify perceived barriers, supports and changes needed to improve end-of-life care (EOLC in the intensive care unit (ICU and to compare physicians’ perceptions with those of nurses. Methods. We conducted a survey of critical care physicians and nurses in an academic medical center via a 3-item survey with open-ended statements regarding the strongest barriers, supports and changes needed to improve EOLC in ICU. Results. Thirty-four percent of all respondents identified physicians as the biggest barrier and thirty-three percent recognized nursing staff as the strongest support towards optimal EOLC. Improved communication was identified by 30% of respondents as the change most needed to improve EOLC. No significant differences between physicians and nurses were observed. Conclusions. Critical care physicians and nurses identified similar barriers, supports and the changes most needed to improve EOLC in the ICU. Recognition of physicians as the strongest barrier, and communication as the change most needed indicate areas for improvement. The finding of nurses as the strongest support for good EOLC provides the opportunity to strengthen their role in the care of the dying patient. Further study of these findings will help develop strategies to improve EOLC in the ICU.

  9. "Lost to follow-up": ethnic disparities in continuity of hospice care at the end of life.

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    Kapo, Jennifer; MacMoran, Holly; Casarett, David

    2005-06-01

    Hospice has become the major provider of comprehensive end-of-life care in the United States, but is underutilized by African American patients. It is likely that whatever factors are responsible for lower rates of hospice utilization among African Americans also lead to lower rates of return to hospice after discharge, but this is not known. To determine whether African American patients who leave hospice are less likely to return before death. Retrospective cohort study. University-affiliated hospice. All patients discharged after a first admission. All patient characteristics were defined by abstraction of electronic medical records at the time of hospice discharge. Of 358 discharged patients, 98 (27%) were decertified and 260 (73%) left voluntarily. Ninety-six patients returned to hospice during the study period. In bivariate analysis, African Americans were less likely to return than were other patients (odds ratio (OR) 0.47, 95% CI: 0.28-0.80; p = .005). In a multivariable logistic regression model, African American ethnicity was independently associated with a decreased likelihood of return. Ethnic disparities in hospice utilization may extend even to those patients who do enroll in hospice. African Americans who leave hospice during their first admission and their families may be less likely to have access to the comprehensive services that hospice programs provide near the end of life, including intensive nursing care, pain and symptom management, and education.

  10. Pediatric intensive care unit family conferences: one mode of communication for discussing end-of-life care decisions.

    Science.gov (United States)

    Michelson, Kelly Nicole; Emanuel, Linda; Carter, Andrea; Brinkman, Priscilla; Clayman, Marla L; Frader, Joel

    2011-11-01

    To examine clinicians' and parents' reflections on pediatric intensive care unit family conferences in the context of discussion about end-of-life care decision making. Retrospective qualitative study. A university-based hospital. Eighteen parents of children who died in the pediatric intensive care unit and 48 pediatric intensive care unit clinicians (physicians, nurses, social workers, child-life specialists, chaplains, and case managers). In-depth, semistructured focus groups and one-on-one interviews designed to explore experiences in end-of-life care decision making. We identified comments about family conferences in all clinician focus groups/interviews, except one individual nurse interview, and in 13 of the 18 parent interviews. Comments from parents were sparse compared with those from clinicians. Four topics emerged: purpose, structural aspects, challenges, and suggestions for improvement. We identified three purposes for family conferences: communication between clinicians and parents; communication among clinicians; and support of families. Described structural aspects of family conferences included: preconference planning, communication during conferences, and postconference processing. Challenges noted involved communicating with parents during family conferences, such as: difficulties associated with having multiple services involved; balancing messages of hope and realism; using understandable language; and communicating with non-English-speakers. Participants described additional challenges related to the logistics of organizing family conferences. Suggestions focused on methods to improve communication in, organization of, and preparation for family conferences. Pediatric intensive care unit clinicians in this study perceive family conferences as having an important role in end-of-life care decision making. The paucity of data from parents, an important finding itself, limits our ability to comment on parents' perceptions of family conferences

  11. UK end-of-life care services in dementia, initiatives and sustainability: results of a national online survey.

    Science.gov (United States)

    Amador, Sarah; Goodman, Claire; Robinson, Louise; Sampson, Elizabeth L

    2016-10-14

    People living and dying with non-cancer diagnoses, including dementia, have poorer access to generalist and specialist palliative care than people with cancer, and experience worse outcomes in terms of pain and symptom control, and quality and experience of care. In the UK, the National Council for Palliative Care (NCPC) ran a national survey of services for end-of-life care for people with dementia (2008) in which 16 services were identified, and reported on case studies and examples of good practice. We updated the NCPC survey to review progress in previously identified services, identify factors that lead to sustainable services and identify new initiatives in this area of care. An online survey was developed and piloted before use. Initiatives were contacted via targeted (N=63) and open call invitations. The survey was made up of 5 sections. Quantitative data were analysed using descriptive statistics. 15 services responded. They engaged in a wide range of activities predominately providing direct care (80%) and workforce development/advisory or educational activities (87%). Results suggest that sustainability of services is reliant on clinicians with a leadership role and wider system support through funding mechanisms and a minimum level of integration within normal service provision. Recent initiatives are largely built on the expertise of the nursing profession (with or without input from medical consultants), and driven mainly by the charity and hospice sector. This has generated a potential new model of care provision in end of life dementia care, 'Hospice-enabled Dementia 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/.

  12. Palliative and end-of-life care in cystic fibrosis: what we know and what we need to know.

    Science.gov (United States)

    Robinson, Walter M

    2009-11-01

    This review will examine what is now known about palliative and end-of-life care for cystic fibrosis (CF) patients, including the changing demographics and context of such care, and then outline a brief research agenda to guide further work in this area. We have now entered an era of more invasive end-of-life care in CF, due in part to changes in the demographics of death in CF and in part to the wider pursuit of lung transplantation. Recent single-center studies suggest that lung transplant listing changes the location and intensity of end-of-life care and complicates end-of-life care decision-making for the patient, family, and clinician. Further studies have demonstrated a high burden of daily symptoms in CF, especially pain and depression. In addition, there is evidence of an increasing burden related to the expanding daily treatment regimen for CF. The time has come for national, multicenter studies of palliative and end-of-life care practices in CF, followed by systematic evaluation of the efficacy of existing interventions. Studies of the symptoms and treatment burdens in CF should continue with an emphasis on interventions to improve health-related quality of life throughout the lifespan of children and adults with CF.

  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. Existential encounters: nurses' descriptions of critical incidents in end-of-life cancer care.

    Science.gov (United States)

    Browall, Maria; Henoch, Ingela; Melin-Johansson, Christina; Strang, Susann; Danielson, Ella

    2014-12-01

    Nurses working with cancer patients in end of life care need to be prepared to encounter patients' psychosocial and spiritual distress. The aim of this study was to describe nurses' experiences of existential situations when caring for patients severely affected by cancer. Nurses (registered and enrolled) from three urban in-patient hospices, an oncology clinic and a surgery clinic and a palliative homecare team were, prior to the start of a training program, invited to write down their experiences of a critical incident (CI), in which existential issues were featured. Eighty-eight CIs were written by 83 nurses. The CIs were analyzed with qualitative content analysis. Two main themes were found: Encounters with existential pain experiences, which concerned facing death and facing losses; and Encountering experiences of hope, which concerned balancing honesty, and desire to live. This study points out that health care professionals need to be aware of patients' feelings of abandonment in exposed situations such as patients' feelings of existential loneliness. That there are some patients that express a desire to die and this makes the nurses feel uncomfortable and difficult to confront these occurrences and its therefore important to listen to patients' stories, regardless of care organization, in order to gain access to patients' inner existential needs. Copyright © 2014 Elsevier Ltd. All rights reserved.

  15. [Facilitators and barriers regarding end of life care at nursing homes: A focus group study].

    Science.gov (United States)

    Sánchez-García, María Remedios; Moreno-Rodríguez, Marina; Hueso-Montoro, César; Campos-Calderón, Concepción; Varella-Safont, Ana; Montoya-Juárez, Rafael

    2017-05-01

    To identify the facilitators and barriers experienced by professional related to end of life care in nursing homes. Descriptive qualitative research with phenomenological orientation, through content analysis. Nursing Homes at Primary Care District in Granada (Spain). Fifteen clinical professionals with, at least 6 months of experience in nursing homes, without specific background in palliative care. Three focus groups were undertaken with professionals of different disciplines and nursing homes. Interviews were recorded and transcribed literally. An open and axial coding was performed to identify relevant categories. Professionals identified difficulties in the communication with families related to relatives' feelings of guilt, difficulty in understanding the deterioration of their relative, and addressing too late the issue of death. Regarding decision making, professionals recognized that they do not encourage participation of patients. Advance directives are valued as a necessary tool, but they do not contemplate implementing them systematically. Other difficulties that professionals highlighted are lack of coordination with other professionals, related to misunderstanding of patients' needs, as well as lack of training, and lack of material and human resources. Facilitators include relationships with primary care teams. It is necessary to improve communication among nursing homes professionals, families, patients and other health workers. Copyright © 2016 Elsevier España, S.L.U. All rights reserved.

  16. Factors associated with multiple transitions in care during the end of life following enrollment in a comprehensive palliative care program

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    Critchley Patrick

    2006-05-01

    Full Text Available Abstract Background Patients often experience changes or transitions in where and by whom they are cared for at the end of life. These cause stress for both patients and families. Although not all transitions during the end of life can be avoided, advance identification of those who could potentially experience numerous transitions may allow providers and caregivers to anticipate the problem and consider strategies to minimize their occurrence. This study examines the relationship between patient characteristics and the total number of transitions experienced by the patient from the date of admission to a palliative care program (PCP to death and during final weeks of life. Methods Subjects included all adults registered with the PCP in Halifax, Nova Scotia, Canada between 1998 and 2002 and who had died during that period. Data was extracted from the regional PCP database and linked to census information. Transitions were defined as either: 1 a change in location of where the patient was cared for; or 2 a change in which service (specialist groupings, primary care, etc provided care. Descriptive statistics were calculated plus rate ratios for the association between patient characteristics and total number of transitions. Results In total, 3972 patients made 5903 transitions during the study period. Although 28% experienced no transitions, over 40% experienced one and 6.3% five or more. At least one transition was made by 47% during the last four weeks of life. Adjusted results suggest women, the elderly and more recent death are associated with experiencing fewer transitions. Multiple transitions were associated with a hospital death and a cancer diagnosis. During the last month of life, age was no longer associated with the total number of transitions, cancer patients were found to experience a similar number or fewer transitions than patients with a non-cancer diagnosis and pain and symptom control become a significant factor associated with

  17. 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

  18. 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

  19. End-of-life opioid administration on neonatal and pediatric intensive care units: nurses' attitudes and practice.

    Science.gov (United States)

    Garten, Lars; Daehmlow, Steffen; Reindl, Tobias; Wendt, Anke; Münch, Annette; Bührer, Christoph

    2011-10-01

    (1) To compare caregivers attitudes on the use of end-of-life opioid analgesia in neonatal (NICU) and pediatric (PICU) intensive care units. (2) To investigate actual opioid administration to DR (delivery room), NICU and PICU patients in various end-of-life situations. (1) Administration of an anonymous self-report questionnaire survey to nurses of 2 level III NICUs and 3 PICUs, presenting 5 hypothetical NICU and PICU patients in end-of-life situations. (2) Retrospective chart review of all deaths at the above mentioned DRs (served by NICU staff), NICUs and PICUs during the years 2008-2009. There was no difference between NICU and PICU nurses in self-proclaimed opioid administration in dying NICU or PICU patients with signs of pain (about 80%) or distress (about 65%). 35.0% of NICU and 44.5% of PICU nurses favoured opioid administration with the implicit aim of active intentional ending of life. Shortening of life as an adverse effect of end-of-life opioid analgesia was acceptable for the majority of PICU (94.5%) and NICU (87.0%) nurses. The rate of dying infants who actually had received opioids was similar in NICUs (41/74, 55.4%) and PICUs (40/68, 58.8%). In contrast, none of the neonates (n=24) who died under primary comfort care in the DR received opioids. End-of-life opioid administration to primary comfort care patients in the DR differs fundamentally from NICU or PICU handling of dying patients. Once patients are admitted to an intensive care unit, practice and attitudes towards end-of-life opioid administration are similar in NICUs and PICUs. Copyright © 2011 European Federation of International Association for the Study of Pain Chapters. Published by Elsevier Ltd. All rights reserved.

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

    NARCIS (Netherlands)

    Noome, M; Dijkstra, B.M.; Leeuwen, E. van; Vloet, L.C.M.

    2016-01-01

    Objectives: 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. Method: A

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

    NARCIS (Netherlands)

    Noome, M.; Dijkstra, B.M.; Leeuwen, E. van; Vloet, L.C.M.

    2016-01-01

    OBJECTIVES: 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. METHOD: A

  2. The Influence of Hypothetical Death Scenarios on Multidimensional End-of-Life Care Preferences.

    Science.gov (United States)

    Dassel, Kara B; Utz, Rebecca; Supiano, Katherine; McGee, Nancy; Latimer, Seth

    2018-01-01

    Differences in end-of-life (EOL) care preferences (eg, location of death, use of life-sustaining treatments, openness to hastening death, etc) based on hypothetical death scenarios and associated physical and/or cognitive losses have yet to be investigated within the palliative care literature. The purpose of this study was to explore the multidimensional EOL care preferences in relation to 3 different hypothetical death scenarios: pancreatic cancer (acute death), Alzheimer disease (gradual death), and congestive heart failure (intermittent death). General linear mixed-effects regression models estimated whether multidimensional EOL preferences differed under each of the hypothetical death scenarios; all models controlled for personal experience and familiarity with the disease, presence of an advance directive, religiosity, health-related quality of life, and relevant demographic characteristics. A national sample of healthy adults aged 50 years and older (N = 517) completed electronic surveys detailing their multidimensional preferences for EOL care for each hypothetical death scenario. The average age of the participants was 60.1 years (standard deviation = 7.6), 74.7% were female, and 66.1% had a college or postgraduate degree. Results revealed significant differences in multidimensional care preferences between hypothetical death scenarios related to preferences for location of death (ie, home vs medical facility) and preferences for life-prolonging treatment options. Significant covariates of participants' multidimensional EOL care preferences included age, sex, health-related quality of life, and religiosity. Our hypothesis that multidimensional EOL care preferences would differ based on hypothetical death scenarios was partially supported and suggests the need for disease-specific EOL care discussions.

  3. 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

    2017-11-01

    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. A preliminary report summarizing available literature and making initial recommendations was developed by a workgroup, reviewed by all conference participants and then was finalized by the workgroup. The International Summit on Intellectual Disability and Dementia produced a report on End of life care in advanced dementia that provides a synthesis statement which encompasses defining the state of advanced dementia, proposes use of palliative care services (including hospice) and recommends special efforts for enabling advanced directives and advance care planning prior to the extensive progression of dementia. The Summit further recommended that when aiding adults with advanced dementia, the following be undertaken: integrative efforts between intellectual disability and palliative care providers, specialized training for carers on end of life care and supports, and involvement of adults with intellectual disability early on in their advance care planning. The Consensus recommendations will ensure greater and more appropriate support at end of life for persons with intellectual disabilities and advanced dementia. © 2017 John Wiley & Sons Ltd.

  4. Palliative care in COPD patients: is it only an end-of-life issue?

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    Annalisa Carlucci

    2012-12-01

    Full Text Available The presence of acute or chronic respiratory failure is often seen as a terminal phase of chronic obstructive pulmonary disease. A great variability in end-of-life practice is observed in these patients mainly because physicians are not always able to correctly predict survival. There is a need for a clear discussion about decision making earlier than when acute respiratory failure ensues. Indeed, a perceived poor quality of life does not necessarily correlate with a clear willingness to refuse invasive or noninvasive mechanical ventilation. It has been suggested to start palliative care earlier, together with curative and restorative care, when there is an increased intensity of symptoms. The patients eligible for palliative care are those complaining of breathlessness, pain, fatigue and depression, which in some studies accounted for a prevalence much higher than 50%. Among comfort measures for palliation, oxygen is frequently prescribed even when the criteria for long-term home oxygen therapy are not met; however, when compared with air, no benefits on dyspnoea have been found. The only drug with a proven effect on dyspnoea is morphine, but not when it is delivered with a nebuliser. Finally, noninvasive ventilation may be used only as a comfort measure for palliation to maximise comfort by minimising adverse effects.

  5. Attitudes toward death, dying, end-of-life palliative care, and interdisciplinary practice in long term care workers.

    Science.gov (United States)

    Leclerc, Bernard-Simon; Lessard, Sabrina; Bechennec, Coralie; Le Gal, Emma; Benoit, Sylvie; Bellerose, Lyne

    2014-03-01

    Besides personal and professional experiences, long term care providers' own attitudes toward death may affect the care given to dying residents. To assess beliefs, values, and attitudes toward death, dying, palliative, and interdisciplinary care in long term care workers and identify any differences between different job categories and places of work. Descriptive cross-sectional survey study. Five public long term care facilities. One thousand one hundred seventy volunteers, clinical managers, and all categories of residential long term care workers. An anonymous paper or electronic self-administered survey questionnaire consisting of 24 items, answered on a 4-point bipolar Likert scale. Between-group differences were compared with the analysis of variance test after adjustment for the multiple post-hoc comparisons. Healthcare workers had a relatively positive attitude toward more than one-half of the selected aspects of interdisciplinary practice and end-of-life palliative care for long-term residents. However, attitudes were more mixed about 10 other aspects and a higher percentage of respondents indicated negative attitudes toward them. Overall, there are significant differences between upper-level professionals and managers (registered nurses, physicians, rehabilitation staff, and clinical managers) vs the hands-on caregivers (nursing assistants, patient assistants, and volunteers) with regard to some aspects of the care of the dying. The results suggest that healthcare workers' attitudes need to be taken into account in long term care facilities. Patient assistants, volunteers, and nursing assistants seem most likely to above all benefit from training and support programs. Copyright © 2014 American Medical Directors Association, Inc. Published by Elsevier Inc. All rights reserved.

  6. [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

  7. Teaching and learning end-of-life care: evaluation of a faculty development program in palliative care.

    Science.gov (United States)

    Sullivan, Amy M; Lakoma, Matthew D; Billings, J Andrew; Peters, Antoinette S; Block, Susan D

    2005-07-01

    To evaluate the effectiveness of the Program in Palliative Care Education and Practice (PCEP), an intensive faculty development program at Harvard Medical School. PCEP is a two-week program offered annually with two on-site sessions in Boston, MA, and an interim period distance-learning component. Training integrates palliative care clinical skill development, learning theory and teaching methods, and leadership and organizational change. Longitudinal surveys (preprogram, retrospective preprogram, and postprogram) of participants from 2000-03 assessed self-reported preparation in providing and teaching palliative care; teaching and patient care practices; and satisfaction with program. The response rate was 96% (n=149) for Session I and 72% for both Session I and II (n=113). Questionnaire responses demonstrated statistically significant improvements with large effect sizes (range 0.7-1.8) on nearly all measures. Preparation increased from 3.0+/-1.1 to 4.2+/-0.7 for providing end-of-life care (1=not well prepared, 5=very well prepared), and from 2.6+/-1.0 to 4.3+/-0.7 for teaching this topic. Respondents reported behavioral changes in patient care and teaching; e.g., after the program, 63% noted that, specifically as a result of attending the course, they encouraged learners to reflect on their emotional responses to dying patients, and 57% conducted experiential exercises (e.g., role-play). Eighty-two percent rated the experience as "transformative," and many responses to open-ended items described powerful learning experiences. Participants rated the program highly (4.9+/-0.1, 1=lowest, 5=highest rating). Integrating clinical content with learning about educational methods is an efficient and effective approach to enhancing clinical faculty's capacity to model and teach clinical care. This program offers an educational model that engages practitioners, stimulates changes in practice, and offers opportunities for reflection and professional revitalization.

  8. Nationwide continuous monitoring of end-of-life care via representative networks of general practitioners in Europe.

    Science.gov (United States)

    Van den Block, Lieve; Onwuteaka-Philipsen, Bregje; Meeussen, Koen; Donker, Gé; Giusti, Francesco; Miccinesi, Guido; Van Casteren, Viviane; Alonso, Tomas Vega; Zurriaga, Oscar; Deliens, Luc

    2013-06-03

    Although end-of-life care has become an issue of great clinical and public health concern in Europe and beyond, we lack population-based nationwide data that monitor and compare the circumstances of dying and care received in the final months of life in different countries. The European Sentinel GP Networks Monitoring End of Life Care (EURO SENTIMELC) study was designed to describe and compare the last months of life of patients dying in different European countries. We aim to describe how representative GP networks in the EURO SENTIMELC study operate to monitor end of life care in a country, to describe used methodology, research procedures, representativity and characteristics of the population reached using this methodology. Nationwide representative Networks of General Practitioners (GPs)--ie epidemiological surveillance systems representative of all GPs in a country or large region of a country--in Belgium, The Netherlands, Italy and Spain continuously registered every deceased patient (>18 year) in their practice, using weekly standardized registration forms, during two consecutive years (2009-2010). A total of 6858 deaths were registered of which two thirds died non-suddenly (from 62% in The Netherlands to 69% in Spain), representative for the GP populations in the participating countries. Of all non-sudden deaths, between 32% and 44% of deaths were aged 85 or older; between 46% and 54% were female, and between 23% and 49% died at home. Cancer was cause of death in 37% to 53% of non-sudden death cases in the four participating countries. Via the EURO SENTI-MELC methodology, we can build a descriptive epidemiological database on end-of-life care provision in several EU countries, measuring across setting and diseases. The data can serve as baseline measurement to compare and monitor end-of-life care over time. The use of representative GP networks for end-of-life care monitoring has huge potential in Europe where several of these networks are operational.

  9. End-of-life care in the intensive care unit: a patient-based questionnaire of intensive care unit staff perception and relatives' psychological response.

    Science.gov (United States)

    Hartog, Christiane S; Schwarzkopf, Daniel; Riedemann, Niels C; Pfeifer, Ruediger; Guenther, Albrecht; Egerland, Kati; Sprung, Charles L; Hoyer, Heike; Gensichen, Jochen; Reinhart, Konrad

    2015-04-01

    Communication is a hallmark of end-of-life care in the intensive care unit. It may influence the impact of end-of-life care on patients' relatives. We aimed to assess end-of-life care and communication from the perspective of intensive care unit staff and relate it to relatives' psychological symptoms. Prospective observational study based on consecutive patients with severe sepsis receiving end-of-life care; trial registration NCT01247792. Four interdisciplinary intensive care units of a German University hospital. Responsible health personnel (attendings, residents and nurses) were questioned on the day of the first end-of-life decision (to withdraw or withhold life-supporting therapies) and after patients had died or were discharged. Relatives were interviewed by phone after 90 days. Overall, 145 patients, 610 caregiver responses (92% response) and 84 relative interviews (70% response) were analysed. Most (86%) end-of-life decisions were initiated by attendings and only 2% by nurses; 41% of nurses did not know enough about end-of-life decisions to communicate with relatives. Discomfort with end-of-life decisions was low. Relatives reported high satisfaction with decision-making and care, 87% thought their degree of involvement had been just right. However, 51%, 48% or 33% of relatives had symptoms of post-traumatic stress disorder, anxiety or depression, respectively. Predictors for depression and post-traumatic stress disorder were patient age and relatives' gender. Relatives' satisfaction with medical care and communication predicted less anxiety (p = 0.025). Communication should be improved within the intensive care unit caregiver team to strengthen the involvement of nurses in end-of-life care. Improved communication between caregivers and the family might lessen relatives' long-term anxiety. © The Author(s) 2015.

  10. A qualitative exploration of perceived key knowledge and skills in end-of-life care in dementia patients among medical, nursing, and pharmacy students.

    Science.gov (United States)

    Nguyen, Christopher M; Jansen, Bannin De Witt; Hughes, Carmel M; Rasmussen, Wendy; Weckmann, Michelle T

    2015-01-01

    The steady increase in the number of people living and dying with dementia, coupled with the recent focus on quality of care, has highlighted the importance of dementia training for health care professionals. This exploratory study aimed to discover which skills health care students felt were important in providing quality end-of-life care to dementia patients. Ninety-four medicine, nursing, and pharmacy students participated in a larger study using open-ended and closed questions to explore attitudes related to caring for dementia patients at the end of life. This study looks at the student responses to an open-ended question regarding the skills and knowledge they believe are needed to provide end-of-life care to dementia patients. Individual responses were reviewed by the researchers, coded into key issues, and tabulated for frequency of occurrences and group differences. Several common issues emerged: knowledge, patience, empathy, understanding, family involvement, compassion, medication knowledge, respect/patient autonomy, communication, quality of life, and patient education. Significant differences were observed among the participant groups on the following issues: Patience and understanding (pharmacy students mentioned these issues less frequently than medical and nursing students), compassion (medical students mentioned this issue more frequently than pharmacy students), and medication knowledge (pharmacy students mentioned this issue more frequently than medical and nursing students). Different health care disciplines (in-training) value different skill sets for the provision of dementia care at the end-of-life. As health care education for dementia patients at the end of life is expanded, it will be important to understand which skills both patients and health care students value.

  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. 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.

  13. Reflecting on one's own death: The existential questions that nurses face during end-of-life care.

    Science.gov (United States)

    Karlsson, Margareta; Kasén, Anne; Wärnå-Furu, Carola

    2017-04-01

    When registered nurses care for patients at the end of life, they are often confronted with different issues related to suffering, dying, and death whether working in hospital or community care. Serious existential questions that challenge nurses' identities as human beings can arise as a result of these situations. The aim of our study was to describe and gain a deeper understanding of nurses' existential questions when caring for dying patients. Focus-group interviews with registered nurses who shared similar experiences and backgrounds about experiences in end-of-life care were employed to gain a deeper understanding about this sensitive subject. Focus-group interviews were performed in hospice care, in community care, and in a palliative care unit in western Sweden. A qualitative hermeneutic approach was employed to interpret the data. Nurses' existential questions balanced between responsibility and guilt in relation to their patients, between fear and courage in relation to being professional caregivers and fellow human beings, and between hope and despair in relation to the other's and their own death. Nurses in end-of-life care experience various emotions from patients related to things physical, spatial, and temporal. When nurses encounter these emotions as expressing a patient's suffering, they lead to challenges of balancing between different feelings in relation to patients, as both professional caregivers and fellow human beings. Nurses can experience growth both professionally and as human beings when caring for patients at the end of life.

  14. Transitions in care during the end of life: changes experienced following enrolment in a comprehensive palliative care program

    Directory of Open Access Journals (Sweden)

    Critchley Patrick

    2005-02-01

    Full Text Available Abstract Background Transitions in the location of care and in who provides such care can be extremely stressful for individuals facing death and for those close to them. The objective of this study was to describe the distribution of transitions in care experienced by palliative care patients following admission to a comprehensive palliative care program (PCP. A better understanding of these transitions may aid in reducing unnecessary change, help predict care needs, enhance transitions that improve quality of life, guide health care system communication links and maximize the cost-effective utilization of different care settings and providers. Methods Transition and demographic information pertaining to all patients registered in the PCP at the Queen Elizabeth II Health Sciences Centre (QEII, Halifax, Nova Scotia, Canada between January 1, 1998 and December 31, 2002 and who died on or prior to December 31, 2002 was extracted from the PCP database and examined. A transition was defined as either: (1 a change in location of where the patient was cared for by the PCP or, (2 a change in which clinical service provided care. Descriptive analysis provided frequencies and locations of transitions experienced from time of PCP admission to death and during the final two and four weeks of life, an examination of patient movement and a summary of the length of stay spent by patients at each care location. Results Over the five year period, 3974 adults admitted to the QEII PCP experienced a total of 5903 transitions (Mean 1.5; standard deviation 1.8; median 1. Patients with no transitions (28% differed significantly from those who had experienced at least one transition with respect to survival time, age, location of death and diagnosis (p Conclusion A relatively small number of patients under the care of the PCP at the end of life, made several transitions in care setting or service provider. These particular patients need closer scrutiny to understand

  15. Low socioeconomic status is associated with more aggressive end-of-life care for working-age terminal cancer patients.

    Science.gov (United States)

    Chang, Chun-Ming; Wu, Chin-Chia; Yin, Wen-Yao; Juang, Shiun-Yang; Yu, Chia-Hui; Lee, Ching-Chih

    2014-12-01

    The relationship between low socioeconomic status (SES) and aggressiveness of end-of-life (EOL) care in cancer patients of working age (older than 18 years and younger than 65 years) is not clear. We assessed the association between aggressiveness of EOL care and differences in SES among working-age terminal cancer patients from Taiwan between 2009 and 2011. A total of 32,800 cancer deaths were identified from the Taiwan National Health Insurance Research Database. The indicators of aggressive EOL care (chemotherapy, more than one emergency room [ER] visit or hospital admission, more than 14 days of hospitalization, intensive care unit [ICU] admission, and death in an acute care hospital) in the last month of life were examined. The associations between SES and the indicators were explored. Up to 81% of the cancer deaths presented at least one indicator of aggressive EOL care. Those who were aged 35-44 years and male, had low SES, had metastatic malignant disease, lived in urban areas, or were in hospitals with more abundant health care resources were more likely to receive aggressive EOL care. In multilevel logistic regression analyses, high-SES cancer deaths had less chemotherapy (p terminal cancer patients in Taiwan received aggressive EOL care. EOL cancer care was even more aggressive in those with low SES. Public health strategies should continue to focus on low-SES patients to provide them with better EOL cancer care. ©AlphaMed Press.

  16. Primary care physicians' educational needs and learning preferences in end of life care: A focus group study in the UK.

    Science.gov (United States)

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

    2017-03-09

    Primary care physicians (General Practitioners (GPs)) play a pivotal role in providing end of life care (EoLC). However, many lack confidence in this area, and the quality of EoLC by GPs can be problematic. Evidence regarding educational needs, learning preferences and the acceptability of evaluation methods is needed to inform the development and testing of EoLC education. This study therefore aimed to explore GPs' EoLC educational needs and preferences for learning and evaluation. A qualitative focus group study was conducted with qualified GPs and GP trainees in the UK. Audio recordings were transcribed and analysed thematically. Expert review of the coding frame and dual coding of transcripts maximised rigour. Twenty-eight GPs (10 fully qualified, 18 trainees) participated in five focus groups. Four major themes emerged: (1) why education is needed, (2) perceived educational needs, (3) learning preferences, and (4) evaluation preferences. EoLC was perceived as emotionally and clinically challenging. Educational needs included: identifying patients for palliative care; responsibilities and teamwork; out-of-hours care; having difficult conversations; symptom management; non-malignant conditions; and paediatric palliative care. Participants preferred learning through experience, working alongside specialist palliative care staff, and discussion of real cases, to didactic methods and e-learning. 360° appraisals and behavioural assessment using videoing or simulated interactions were considered problematic. Self-assessment questionnaires and patient and family outcome measures were acceptable, if used and interpreted correctly. GPs require education and support in EoLC, particularly the management of complex clinical care and counselling. GPs value mentoring, peer-support, and experiential learning alongside EoLC specialists over formal training.

  17. The effectiveness of the Liverpool care pathway in improving end of life care for dying cancer patients in hospital. A cluster randomised trial

    Directory of Open Access Journals (Sweden)

    Pellegrini Fabio

    2011-01-01

    Full Text Available Abstract Background Most cancer patients still die in hospital, mainly in medical wards. Many studies in different countries have shown the poor quality of end-of-life care delivery in hospitals. The Program "Liverpool Care Pathway for the dying patient" (LCP, developed in the UK to transfer the hospice model of care into hospitals and other care settings, is a complex intervention to improve the quality of end-of-life care. The results from qualitative and quantitative studies suggest that the LCP Program can improve significantly the quality of end-of-life care delivery in hospitals, but no randomised trial has been conducted till now. Methods and design This is a randomized cluster trial, stratified by regions and matched for assessment period. Pairs of eligible medical wards from different hospitals will be randomized to receive the LCP-I Program or no intervention until the end of the trial. The LCP-I Program will be implemented by a Palliative Care Unit. The assessment of the end-points will be performed for all cancer deaths occurred in the six months after the end of the LCP-I implementation in the experimental wards and, in the same period of time, in the matched control wards. The primary end-point is the overall quality of end-of-life care provided on the ward to dying cancer patients and their families, assessed using the Global Scale of the Italian version of the Toolkit "After-death Bereaved Family Member Interview". Discussion This study can be interpreted as a Phase III trial according to the Medical Research Council Framework. In this study, the effectiveness of a fully defined intervention is assessed by comparing the distribution of the endpoints in the experimental and in the control arm. Research ID RFPS-2006-6-341619 Trial registration ClinicalTrials.gov Identifier: NCT01081899

  18. A new model for end-of-life care in nursing homes.

    Science.gov (United States)

    Hui, Elsie; Ma, Hon Ming; Tang, Wing Han; Lai, Wai Sze; Au, Ka Ming; Leung, Mei Tak; Ng, Joey S W; Ng, Winnie W L; Lee, Jenny S W; Li, Philip K T; Woo, Jean

    2014-04-01

    This study aimed to promote quality end-of-life (EOL) care for nursing home residents, through the establishment of advance care plan (ACP) and introduction of a new care pathway. This pathway bypassed the emergency room (ER) and acute medical wards by facilitating direct clinical admission to an extended-care facility. An audit on a new clinical initiative that entailed the Community Geriatrics Outreach Service, ER, acute medical wards, and an extended-care facility during winter months in Hong Kong. The participants were older nursing home residents enrolled in an EOL program. We monitored the ratio of clinical to emergency admissions, ACP compliance rate, average length of stay (ALOS) in both acute hospital and an extended-care facility, and mortality rates. A total of 76 patients were hospitalized from January to March 2013. Of them, 30 (39%) were directly admitted to the extended-care facility, either through the liaison of Community Geriatrics Outreach Service (group A, 19/76, 25%) or transferred from the ER (group B, 11/76, 14%). The remaining 46 patients (group C, 61%) were admitted via the ER to acute medical wards following the usual pathway, followed by transfer to an extended-care facility if indicated. The ACP compliance rate was nearly 100%. In the extended-care unit, groups A and C had similar ALOS of 11.8 and 11.1 days, respectively, whereas group B had a shorter stay of 7.6 days. The ALOS of group C in acute medical wards was 3.5 days. The in-hospital mortality rates were comparable in groups A and C of 26% and 28%, respectively, whereas group B had a lower mortality rate of 18%. Nearly 40% of EOL patients could be managed entirely in an extended-care setting without compromising the quality of care and survival. A greater number of patients may benefit from the EOL program by improving the collaboration between community outreach services and ER; and extending hours for direct clinical admission to an extended-care facility. Copyright © 2014

  19. UK quality statements on end of life care in dementia: a systematic review of research evidence.

    Science.gov (United States)

    Candy, Bridget; Elliott, Margaret; Moore, Kirsten; Vickerstaff, Victoria; Sampson, Elizabeth; Jones, Louise

    2015-10-19

    Globally, the number of people who die with dementia is increasing. The importance of a palliative approach in the care of people with dementia is recognised and there are national polices to enhance current care. In the UK implementation of these polices is promoted by the National Institute for Health and Care Excellence (NICE) Dementia Quality Standards (QS). Since publication of the QS new care interventions have been developed. To explore critically the current international research evidence on effect available to inform NICE Dementia QS relevant to end of life (EOL) care. We used systematic review methods to seek the research evidence for three statements within the Dementia QS. These are those that recommend: (1) a case management approach, (2) discussing and consideration of making a statement about future care (SFC) and (3) a palliative care assessment (PCA). We included evaluative studies of relevant interventions that used a comparative design, such as trials and cohort studies, and measured EOL care outcomes for persons dying with moderate to severe dementia. Our primary outcome of interest was whether the intervention led to a measurable impact on wellbeing for the person with dementia and their family. We assessed included studies for quality using a scale by Higginson and colleagues (2002) for assessment of quality of studies in palliative care, and two authors undertook key review processes. Data sources included Cinahl, Embase, and PsychINFO from 2001 to August 2014. Our search strategy included free text and medical subject headings relevant to population and recommended care. We found seven studies evaluating a care intervention; four assessed SFC, three PCA. None assessed case management. Studies were of weak design; all used retrospective data and relied on others for precise record keeping and for accurate recall of events. There was limited overlap in outcome measurements. Overall reported benefits were mixed. Quality statements relevant to

  20. An evaluation of the implementation of a programme to improve end-of-life care in nursing homes.

    Science.gov (United States)

    Badger, F; Clifford, C; Hewison, A; Thomas, K

    2009-09-01

    The Gold Standards Framework in Care Homes programme aims to improve the quality of end-of-life care for residents. The impact of introducing phase 2 of the programme to homes in England was evaluated. A pre-post survey design was adopted, focusing on indicators identified as markers of good end-of-life care. The 95 homes in phase 2 of the programme were invited to participate in the evaluation. Homes completed a baseline survey of care provision and an audit of the five most recent resident deaths. The survey and audit were repeated post programme completion. Forty-nine homes returned completed pre- and post-surveys, 44 returned pre- and post-data on deaths. Although some staff found completion of the programme challenging, homes that returned pre- and post-data demonstrated improvements in aspects of end-of-life care. There were statistically significant increases in the proportion of residents who died in the care homes and those who had an advanced care plan. Crisis admissions to hospital were significantly reduced. This evaluation indicates that appropriately funded structured programmes have the potential to assist nursing homes improve the provision of end-of-life care to older adults, in line with government health policy.

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

    NARCIS (Netherlands)

    Andrew, E.V.W.; Cohen, J.; Evans, N.; Meñaca, 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

  2. 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

  3. 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...

  4. Palliative care 1: principles of palliative care nursing and end-of-life care.

    Science.gov (United States)

    Becker, Robert

    The first in this three-part series examines the diversity and challenges inherent in nurses' contribution to palliative care. The art and the science of caring for those who are dying and their families has long been recognised as an immensely demanding and rewarding part of health and social care. For nurses, it is central to the values and principles that underpin clinical practice.

  5. 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

  6. How should nations measure the quality of end-of-life care for older adults? Recommendations for an international minimum data set.

    Science.gov (United States)

    Casarett, David J; Teno, Joan; Higginson, Irene

    2006-11-01

    Nations face numerous challenges in providing high-quality end-of-life care for their citizens, and an aging population that has a prolonged trajectory of decline and substantial needs for care magnifies these challenges. As nations begin to address these challenges, it will be essential to determine whether their responses are effective, but current national data collection efforts are sporadic, and data are often collected only for patients who receive care through certain funding programs or provider organizations or in selected sites of care. Therefore, governments do not know whether their citizens are receiving adequate care, whether current programs are improving care, or how their outcomes compare with those of other countries. This article describes the importance of developing national minimum data sets that can be used to assess the quality of end-of-life care that older adults receive and recommends key variables that these data sets should include.

  7. 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

    2016-01-01

    Background: 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. Aim: This study aimed to explore the views of family caregivers about quality end-of-life care for people with dementia. Design: Qualitative study using in-depth interviews and analysed using thematic analysis. Setting/participants: 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. Results: Three over-arching themes were derived from the interviewees’ discourse, including maintaining the person within, fostering respect and dignity and showing compassion and kindness. Conclusion: 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. PMID:27815555

  8. Palliative care physicians' experiences of end-of-life communication: A focus group study.

    Science.gov (United States)

    Udo, C; Lövgren, M; Lundquist, G; Axelsson, B

    2017-07-20

    The aim of this study was to explore palliative home care physicians' experiences regarding end-of-life breakpoint communication (BPC). This is a qualitative study where focus group interviews were conducted and analysed using qualitative content analysis. The results show that the participants saw themselves as being responsible for accomplishing BPC, and they were convinced that it should be regarded as a process of communication initiated at an early stage, i.e. proactively. However, BPC was often conducted as a reaction to the patient's sudden deterioration or sometimes not at all. The barriers to achieving proactive BPC included physicians' uncertainty regarding the timing of BPC, primarily due to difficulties in prognostication in terms of time of death, and uncertainty as to what BPC should include and how it should best be approached. Furthermore, there was insufficient documentation regarding previous BPC, which impeded proactive BPC. Although our study shows that physicians are ambitious when it comes to the communication of information to patients and families, there is a need for further training in how to conduct BPC and when to initiate the BPC process. Furthermore, there should be documentation that different professionals can access as this would appear to facilitate a proactive BPC process. © 2017 John Wiley & Sons Ltd.

  9. 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

    2017-11-21

    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.

  10. Turkish critical care nurses' views on end-of-life decision making and practices.

    Science.gov (United States)

    Badır, Aysel; Topçu, İbrahim; Türkmen, Emine; Göktepe, Nilgün; Miral, Mukaddes; Ersoy, Nermin; Akın, Esra

    2015-05-06

    Life-sustaining treatments are increasingly used in intensive care units (ICUs) for EOL care, but the decision to use these may cause ethical issues. The aim of this study was to investigate the views and practices of critical care nurses in Turkey on the end-of-life (EOL) care. This was a cross-sectional study. The research was conducted in 32 second- and third-level ICUs of 19 Ministry of Health research hospitals in Turkey. The Views of European Nurses in Intensive Care on EOL Care tool was used for data collection. The total sample size was 602. While half of the nurses stated that the withholding and withdrawal of life support were ethically different decisions, 40% felt both decisions were unethical. The expected quality of life as viewed by the patient, the medical team, the family and the nursing team (90·4%, 85·4%, and 83·4%, respectively) was an important factor in EOL decision making. The majority of the nurses (75·7%) were not directly involved in the EOL decision making and 78·4% of nurses were committed to family involvement in EOL decisions. When withdrawing treatment, 87·2% of ICU nurses agreed that the patient and family members should perform their final religious and spiritual duties. Further results showed that after withdrawing treatment, a majority of nurses (86%) agreed to continue pressure sore prevention, effective pain relief (85·5%), nutritional support (77·6%) and hydration (64·8%). Almost half (48·2%) indicated that keeping the patients in the ICU was unnecessary. ICU nurses expressed a range of experiences and practices regarding EOL care. ICU nurses should be more involved in the decision-making process about EOL care. Due to their unique relationship with patients, nurses should be involved in EOL care decision making; however, patients, families or nurses are not often involved in the decision-making process in Turkey. © 2015 British Association of Critical Care Nurses.

  11. 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.

  12. PRISMA: a pan-European co-ordinating action to advance the science in end-of-life cancer care.

    Science.gov (United States)

    Harding, Richard; Higginson, Irene J

    2010-06-01

    The epidemiology of progressive cancer and associated mortality in Europe underlines the essential need for high quality palliative and end-of-life care for its citizens. Currently, care of patients at the end-of-life is under-researched and under-funded. This is due to a lack of prioritisation, challenges in defining end-of-life, lack of a common research strategy for Europe that identifies and implements best practice and highest scientific principles, and the need for common use of appropriate well-validated tools to measure and improve the end-of-life cancer experience in Europe. PRISMA is a pan-European co-ordinating action funded under Framework Programme 7 of the European Commission. With 12 partners in 9 countries, it is delivering a series of 8 Work Packages with the common aim of promoting best practice in the measurement of end-of-life care, setting an agenda and guidance that reflects European cultural diversity, and is informed by both public and clinical priorities. Guidance in the selection, adaptation and use of core tools is informed by experts in public health and clinical research. PRISMA is currently producing a series of outputs to be accessible to the wider community of researchers, policy makers, funders and clinicians. We encourage new partnerships to build on the work of PRISMA and to lead high quality work informed by our deliverables. PRISMA, we hope, is redressing the current lack of co-ordination of cancer end-of-life research across Europe, and will catalyse the conduct of evidence-based care that reflects European populations and priorities. Copyright 2010 Elsevier Ltd. All rights reserved.

  13. Quality of Life and Cost of Care at the End of Life: The Role of Advance Directives

    Science.gov (United States)

    Garrido, Melissa M.; Balboni, Tracy A.; Maciejewski, Paul K.; Bao, Yuhua; Prigerson, Holly G.

    2014-01-01

    Context Advance directives (ADs) are expected to improve patients’ end-of-life outcomes, but retrospective analyses, surrogate recall of patients’ preferences, and selection bias have hampered efforts to determine ADs’ effects on patient outcomes. Objectives To examine associations among ADs, quality of life, and estimated costs of care in the week before death. Methods We used prospective data from interviews of 336 patients with advanced cancer and their caregivers, and analyzed patient baseline interview and caregiver and provider post-mortem evaluation data from the Coping with Cancer study.