Rangachari, Deepa; Smith, Thomas J
The provision of comprehensive cancer care in an increasingly complex landscape necessitates that oncology providers familiarize themselves with the application of palliative care. Palliative care is a learnable skill. Recent endeavors in this arena have demonstrated that providing palliative care is part and parcel with providing compassionate and high-quality cancer care, specifically as it pertains to physical and emotional outcomes for patients and their caregivers alike. The basic tenets of providing palliative care emphasize: frequent and honest communication, routine and systematic symptom assessment, integration of spiritual assessments, and early integration of specialized hospice and palliative care resources as a patient's circumstances evolve. This article will endeavor to review and synthesize recent developments in the palliative care literature, specifically as they pertain to the oncologist as a primary palliative care provider.
Rangachari, Deepa; Smith, Thomas J.
The provision of comprehensive cancer care in an increasingly complex landscape necessitates that oncology providers familiarize themselves with the application of palliative care. Palliative care is a learnable skill. Recent endeavors in this arena have demonstrated that providing palliative care is part and parcel with providing compassionate and high-quality cancer care, specifically as it pertains to physical and emotional outcomes for patients and their caregivers alike. The basic tenets...
Palliative care is treatment of the discomfort, symptoms, and stress of serious illness. It provides relief from distressing ... care at the end of life, always includes palliative care. But you may receive palliative care at any ...
... NCI support palliative care research? What is palliative care? Palliative care is care given to improve the quality ... the direction of a physician. Who gives palliative care ? Palliative care is usually provided by palliative care specialists, ...
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Yeaman, Paul A; Ford, James L; Kim, Kye Y
Providing quality palliative care is a daunting task profoundly impacted by diminished patient capacity at the end of life. Alzheimer disease (AD) is a disorder that erases our memories and is projected to increase dramatically for decades to come. By the time the patients with AD reach the end stage of the disease, the ability of patients to provide pertinent subjective complaints of pain and discomfort would have vanished. Historical perspectives of palliative care, exploration of the AD process, ethical issues, and crucial clinical considerations are provided to improve the understanding of disease progression and quality of care for patients with end-stage AD.
Owens, Darrell; Eby, Kerry; Burson, Sean; Green, Meghan; McGoodwin, Wendy; Isaac, Margaret
The purpose of the Primary Palliative Care Pilot Project was to determine if patients with a life-limiting illness who receive their primary care and palliative care from a consistent provider via a nurse practitioner (NP)-founded and-directed Primary Palliative Care Clinic at a public hospital would have improved symptom management and decreased emergency department utilization over time. All patients followed in the Harborview Primary Palliative Care Clinic from January to March 2010. The results of this project demonstrate that patients with a life-limiting illness who receive their primary care and palliative care in an NP-founded and -directed Primary Palliative Care Clinic have decreased utilization of the emergency department, and some experience improvement in symptom assessment scores. Palliative care providers and administrators should explore opportunities to expand outpatient palliative care clinics with an emphasis on primary care and continuity of care. NPs by experience and education are ideally suited to manage both primary and palliative care needs for people at the end of life. ©2011 The Author(s) Journal compilation ©2011 American Academy of Nurse Practitioners.
 Consequently, this paper makes no claims that ndings are replicable or generalisable. Qualitative. Dilemmas of telling bad news: Paediatric palliative care providers' experiences in ... of their lives became more challenging for the caregivers because they were not prepared for cultural complexities. In view of the ndings.
Buss, Mary K; Rock, Laura K; McCarthy, Ellen P
Palliative care provides invaluable clinical management and support for patients and their families. For most people, palliative care is not provided by hospice and palliative medicine specialists, but rather by their primary care providers. The recognition of hospice and palliative medicine as its own medical subspecialty in 2006 highlighted the importance of palliative care to the practice of medicine, yet many health care professionals harbor misconceptions about palliative care, which may be a barrier to ensuring that the palliative care needs of their patients are identified and met in a timely fashion. When physicians discuss end-of-life concerns proactively, many patients choose more comfort-focused care and receive care more aligned with their values and goals. This article defines palliative care, describes how it differs from hospice, debunks some common myths associated with hospice and palliative care, and offers suggestions on how primary care providers can integrate palliative care into their practice. Copyright © 2016 Mayo Foundation for Medical Education and Research. Published by Elsevier Inc. All rights reserved.
Nowels, David; Jones, Jacqueline; Nowels, Carolyn T; Matlock, Daniel
The need for all providers to deliver basic palliative care has emerged as patients' needs outstrip the capacity of specialty palliative care. Many patients with complex illnesses have unmet needs and are seen in primary care more than other settings. We explore primary care providers' willingness and perceived capacity to provide basic palliative care, and their concerns and perceived barriers. We performed semistructured telephone interviews with 20 primary care providers about their perceptions of palliative care, including needs, practices, experiences, access, and what would be helpful for their practices to systematically provide basic palliative care. We identified 3 major themes: (1) Participants recognize palliative needs in patients with complex problems. (2) They reactively respond to those needs using practice and community resources, believing that meeting those needs at a basic level is within the scope of primary care. (3) They can identify opportunities to improve the delivery of a basic palliative approach in primary care through practice change and redesign strategies used in enhanced primary care environments. Systematic attention along the multidimensional domains of basic palliative care might allow practices to address unmet needs in patients with complex illnesses by using existing practice improvement models, strategies, and prioritization. © Copyright 2016 by the American Board of Family Medicine.
Singer, Yoram; Rotem, Bosmat; Alsana, Sa'id; Shvartzman, Pesach
.... A mobile palliative care unit (MPCU) has been established, with the aims of delivering palliative care to terminal patients living in remote regions not easily accessible to the community health care teams and to provide palliative care...
Finn, Laura; Green, Alva Roche; Malhotra, Sonia
Despite the evidence for the fundamental need for palliative medicine services in the practice of oncology, integration of these medical specialties remains a clinical challenge. We reviewed the current literature regarding the practice of palliative medicine in the field of oncology, examining randomized clinical trials of palliative medicine services in advanced cancer, models of palliative medicine delivery, studies of cost effectiveness, and national palliative medicine practice and referral guidelines. In this review, we describe the role of palliative medicine in oncology, including the timing of palliative medicine consultation, models of care delivery, and improvements in patient outcomes. Randomized controlled trials and national guidelines support early referral of patients with cancer to palliative medicine. Palliative medicine has a fundamental role in symptom management, distress relief, family and caregiver support, and advance care planning. Integration of palliative medicine in oncology improves patient outcomes and decreases healthcare costs. Early involvement of palliative medicine after the cancer diagnosis is supported by national guidelines, but barriers include variable referral patterns among oncologists and the need for an expanded palliative medicine workforce. Palliative medicine has a wide-ranging role in the spectrum of comprehensive cancer care-from patient diagnosis to survivorship. The entire multidisciplinary care team has a role in providing palliative care in inpatient and outpatient settings. An effective palliative medicine and oncology collaboration improves patient care and quality of life, has broad research and guideline support, and is cost effective.
Mistry, Bina; Bainbridge, Daryl; Bryant, Deanna; Tan Toyofuku, Sue; Seow, Hsien
... 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...
Murray, S A; Osman, H
Palliative care focuses on improving the quality of life and relieving suffering in patients with progressive chronic illnesses. Palliative care services remain very limited in the Eastern Mediterranean region although the need for them is high and increasing. The World Health Organization has identified the development of palliative care as a regional priority. This review highlights the urgent need to provide such care in the region and proposes that primary care providers in the region are well placed to provide palliative care in their communities. As palliative medicine is not established as a specialty in the region, training and support in palliative care are required to build capacity in end-of-life care and to allow all patients who would benefit from this approach access to it equitably and early in their illness.
Hirooka, Kayo; Miyashita, Mitsunori; Morita, Tatsuya; Ichikawa, Takeyuki; Yoshida, Saran; Akizuki, Nobuya; Akiyama, Miki; Shirahige, Yutaka; Eguchi, Kenji
Although confidence in providing palliative care services is an essential component of providing such care, factors relating to this have not been investigated in Japan. This study aimed to explore confidence in the ability to provide palliative care and associated difficulties and to explore correlations between these variables. Design A cross-sectional mail survey of medical doctors and registered nurses in Japan was performed as part of a regional intervention trial: the Outreach Palliative Care Trial of Integrated Regional Model study. Subjects Questionnaires were sent to 7905 medical professionals, and 409 hospital doctors, 235 general practitioners, 2160 hospital nurses and 115 home visiting nurses completed them. Confidence in providing palliative care was low and difficulties frequent for all types of medical professionals assessed. In particular, only 8-24% of them, depending on category, agreed to 'having adequate knowledge and skills regarding cancer pain management'. In particular, 55-80% of medical professionals acknowledged difficulty with 'alleviation of cancer pain'. Multiple regression analysis revealed that confidence was positively correlated with the amount of relevant experience and, for medical doctors, with 'prescriptions of opioids (per year)'. Moreover, difficulties were negatively correlated with the amount of relevant clinical experience. Effective strategies for developing regional palliative care programs include basic education of medical professionals on management of cancer-related pain (especially regarding opioids) and other symptoms.
Background. In general, the principles of palliative care suggest that, at some stage, patients should be given 'bad news' about poor illness prognosis. e information is oen important for care planning, especially when it involves disclosure to children. Although there are ongoing debates about whether to tell or not to tell ...
This article presents a rapid review of the published literature and available resources for educating Canadian physicians to provide palliative and end-of-life care. Several key messages emerge from the review. First, there are many palliative care educational resources already available for Canadian physicians. Second, the many palliative care education resources are often not used in physician training. Third, we know that some palliative care educational interventions are inexpensive and scalable, while others are costly and time-consuming; we know very little about which palliative care educational interventions impact physician behavior and patient care. Fourth, two palliative care competency areas in particular can be readily taught: symptom management and communication skill (e.g., breaking bad news and advance care planning). Fifth, palliative care educational interventions are undermined by the "hidden curriculum" in medical education; interventions must be accompanied by continuing education and faculty development to create lasting change in physician behavior. Sixth, undergraduate and postgraduate medical training is shifting from a time-based training paradigm to competency-based training and evaluation. Seventh, virtually every physician in Canada should be able to provide basic palliative care; physicians in specialized areas of practice should receive palliative care education that is tailored to their area, rather than generic educational interventions. For each key message, one or more implications are provided, which can serve as recommendations for a framework to improve palliative care as a whole in Canada.
Kozlov, Elissa; Niknejad, Bahar; Reid, M C
Patients with advanced illness often have high rates of psychological symptoms. Many multicomponent palliative care intervention studies have investigated the efficacy of overall symptom reduction; however, little research has focused explicitly on how interventions address psychological symptoms associated with serious illness. The current study reviewed 59 multicomponent palliative care intervention articles and analyzed the mental health components of palliative care interventions and their outcomes in order to better understand the current state of psychological care in palliative care. The majority of articles (69.5%) did not provide any details regarding the psychological component delivered as part of the palliative care intervention. Most (54.2%) studies did not specify which provider on the team was responsible for providing the psychological intervention. Studies varied regarding the type of outcome measure utilized; multi-symptom assessment scales were used in 54.2% of studies, mental health scales were employed in 25.4%, quality of life and distress scales were used in 16.9%, and no psychological scales were reported in 28.8%. Fewer than half the studies (42.4%) documented a change in a psychological outcome. The majority of analyzed studies failed to describe how psychological symptoms were identified and treated, which discipline on the team provided the treatment, and whether psychological symptoms improved as a result of the intervention. Future research evaluating the effects of palliative care interventions on psychological symptoms will benefit from using reliable and valid psychological outcome measures and providing specificity regarding the psychological components of the intervention and who provides it.
... and communication among family members and providers of care. Palliative care can improve your quality of life when ... control Need help understanding your situation and coordinating care PALLIATIVE OR COMFORT CARE Often a team of specialists ...
Cimino, Nina M; McPherson, Mary Lynn
Palliative and hospice care are increasingly being provided in nursing home settings. The current article reviews the existing evidence relevant to nursing homes to provide practitioners with a greater understanding of the impact of palliative and hospice care on clinical care outcomes (e.g., pain, symptom management), processes of care outcomes (e.g., hospitalizations, cost of care), and family member or health care proxy perceptions of care. Overall, the provision of hospice or palliative care in nursing facilities can improve the clinical care residents receive, reduce hospitalizations, and improve family members' perception of care. Copyright 2014, SLACK Incorporated.
Mosoiu, Daniela; Mitrea, Nicoleta; Dumitrescu, Malina
Hospice Casa Sperantei has been pioneering palliative care development in Romania since 1992. The have developed specialist palliative care services in home-based settings, inpatient units, day care centers and as hospital support teams. They have provided national and international education programs for professionals in the palliative care field, as well as promoting palliative care integration in the healthcare system. Legislative improvements were adopted including funding mechanisms for the reimbursement of palliative care services through the health insurance funds, review of opioid policy, and quality standards of care. By the end of 2015, Romania had 115 specialist palliative care services (78 palliative care inpatient units, 24 home-based palliative care services, 5 outpatient palliative care clinics, 4 day care centers and 4 hospital support teams). A palliative care subspecialty for doctors was recognized as early as 2000, and a multidisciplinary Master's Degree program has been available at Transilvania University since 2010, when the first palliative care academic position was established. Nursing education includes mandatory palliative care modules in nursing schools. For coordinated development of palliative care at the national level a national strategy was proposed defining three levels of palliative care provision, local, district and national. The implementation of the palliative care strategy is partially funded through a World Bank loan. Copyright © 2017. Published by Elsevier Inc.
Clemmer, Sarah J.; Ward-Griffin, Catherine; Forbes, Dorothy
Canadians are experiencing increased life expectancy and chronic illness requiring end-of-life care. There is limited research on the multiple roles for family members providing home-based palliative care. Based on a larger ethnographic study of client-family-provider relationships in home-based palliative care, this qualitative secondary analysis…
Full Text Available Lori Wiener,1,*,# Meaghann Shaw Weaver,2,3,*,# Cynthia J Bell,4,# Ursula M Sansom-Daly,5–7 1Pediatric Oncology Branch, National Cancer Institute, NIH, Bethesda, MD, USA; 2Department of Oncology, Children’s National Health System, Washington, DC, USA; 3Department of Oncology, St Jude Children’s Research Hospital, Memphis, TN, USA; 4College of Nursing, Wayne State University and Hospice of Michigan Institute, Detroit, MI, USA; 5Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children’s Hospital, Randwick, NSW, Australia; 6Discipline of Paediatrics, School of Women’s and Children’s Health, UNSW Medicine, The University of New South Wales, Kensington, NSW, Australia; 7Sydney Youth Cancer Service, Sydney Children’s/Prince of Wales Hospitals, Randwick, NSW, Australia *These authors have contributed equally to this work #On behalf of the Pediatric Palliative Care Special Interest Group at Children’s National Health System Abstract: Medical providers are trained to investigate, diagnose, and treat cancer. Their primary goal is to maximize the chances of curing the patient, with less training provided on palliative care concepts and the unique developmental needs inherent in this population. Early, systematic integration of palliative care into standard oncology practice represents a valuable, imperative approach to improving the overall cancer experience for adolescents and young adults (AYAs. The importance of competent, confident, and compassionate providers for AYAs warrants the development of effective educational strategies for teaching AYA palliative care. Just as palliative care should be integrated early in the disease trajectory of AYA patients, palliative care training should be integrated early in professional development of trainees. As the AYA age spectrum represents sequential transitions through developmental stages, trainees experience changes in their learning needs during their progression through sequential
Taleghani, Fariba; Shahriari, Mohsen; Alimohammadi, Nasrollah
Chronic diseases such as cancer would lead to various health needs in patients and their families. To meet needs, developing new educational nursing courses is necessary. Therefore this study was conducted to empower nurses through designing and conducting short-term educational courses for training palliative care nurses. This study was a community-based action research which was conducted at Isfahan hospitals that provide services for cancer patients during 2015 at four stages (planning, acting, reflection, and evaluation). Participants (33 samples) included nurses, head nurses, managers of nursing services, nursing professors and professors of oncology department. Data were gathered through individual and group interviews and analyzed using content analysis. Data analysis resulted in 3 categories of "professional development of nursing in palliative care" which included subcategories of: knowledge-based performance and positive change in attitude, "obstacles to provide palliative care" with subcategories of: insufficient professional responsibility, insufficient ability in managing some of patients' symptoms and inappropriate interaction between nurses and physicians and "strategies for improving provision of palliative care" with subcategories of: improving the interactions between physicians and nurses, continuous trainings for palliative care and the necessity of developing palliative care in the country. To facilitate the process of providing palliative care to cancer patients, necessary actions and measures must be conducted including improvement of interaction between the members of health team, organizing continuing educational courses on palliative care and development of providing palliative care all over the country by managers of health centers.
Full Text Available Background: Chronic diseases such as cancer would lead to various health needs in patients and their families. To meet needs, developing new educational nursing courses is necessary. Therefore this study was conducted to empower nurses through designing and conducting short-term educational courses for training palliative care nurses. Materials and Methods: This study was a community-based action research which was conducted at Isfahan hospitals that provide services for cancer patients during 2015 at four stages (planning, acting, reflection, and evaluation. Participants (33 samples included nurses, head nurses, managers of nursing services, nursing professors and professors of oncology department. Data were gathered through individual and group interviews and analyzed using content analysis. Results: Data analysis resulted in 3 categories of "professional development of nursing in palliative care" which included subcategories of: knowledge-based performance and positive change in attitude, "obstacles to provide palliative care" with subcategories of: insufficient professional responsibility, insufficient ability in managing some of patients' symptoms and inappropriate interaction between nurses and physicians and "strategies for improving provision of palliative care" with subcategories of: improving the interactions between physicians and nurses, continuous trainings for palliative care and the necessity of developing palliative care in the country. Conclusions: To facilitate the process of providing palliative care to cancer patients, necessary actions and measures must be conducted including improvement of interaction between the members of health team, organizing continuing educational courses on palliative care and development of providing palliative care all over the country by managers of health centers.
Moody, Karen; McHugh, Marlene; Baker, Rebecca; Cohen, Hillel; Pinto, Priya; Deutsch, Stephanie; Santizo, Ruth O; Schechter, Miriam; Fausto, James; Joo, Pablo
The Institute of Medicine and the American Academy of Pediatrics has called for improvement in education and training of pediatricians in pediatric palliative care (PPC). Given the shortage of PPC physicians and the immediate need for PPC medical education, this study reports the outcomes of a problem-based learning (PBL) module facilitated by academic general and subspecialty pediatric faculty (non-PPC specialists) to third year medical students. Objectives/Setting: To test the effectiveness of a PPC-PBL module on third year medical students' and pediatric faculty's declarative knowledge, attitudes toward, perceived exposure, and self-assessed competency in PPC objectives. A PBL module was developed using three PPC learning objectives as a framework: define core concepts in palliative care; list the components of a total pain assessment; and describe key principles in establishing therapeutic relationships with patients. A PPC physician and nurse practitioner guided pediatric faculty on facilitating the PPC-PBL. In Part 1, students identified domains of palliative care for a child with refractory leukemia and self-assigned questions to research and present at the follow-up session. In Part 2, students were expected to develop a care plan demonstrating the three PPC objectives. Measures included a knowledge exam and a survey instrument to assess secondary outcomes. Students' declarative knowledge, perceived exposure, and self-assessed competency in all three PPC learning objectives improved significantly after the PPC-PBL, p = 0.002, p 80%). Students and faculty rated palliative care education as "important or very important" at baseline and follow-up. This study suggests that key concepts in PPC can be taught to medical students utilizing a PBL format and pediatric faculty resulting in improved knowledge and self-assessed competency in PPC.
Fan, Sheng-Yu; Lin, I-Mei; Hsieh, Jyh-Gang; Chang, Chih-Jung
Psychosocial care is an important component of palliative care, which is also provided by physicians and nurses. The aim of this study was to explore the experiences of physicians and nurses in palliative care regarding the process of psychosocial care, the difficulties, and the support needs from "psychosocial care professionals." A two-phase mixed methods study was conducted. In the first phase, 16 physicians and nurses with palliative care experience were recruited. A semi-structured interview was used to collect data about their experience of providing psychosocial care, and these were analyzed using thematic analysis. In the second phase, 88 physicians and nurses completed an online survey that was developed from the qualitative results. Qualitative results revealed three themes: 1) the contents of psychosocial care included not only disease-related events but also emotional and family support, 2) providing psychosocial care was a dynamic process including assessment, interventions, and evaluation, and 3) there were difficulties from the participants themselves, patients and families, and the system. Participants also reflected on what they did and the influences of providing care on themselves. Quantitative results showed that the most common psychosocial care was discussion about the progress of the disease and future care plan; the difficulty was the long-term problems in families; and the psychosocial care professionals most needed were social workers and clinical/counseling psychologists. Understanding the process of psychosocial care and integrating it with specialized mental health care in a team could improve the quality of psychosocial care in palliative care. Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Ridley, Julia; Dance, Derry; Pare, Daniel
Humor frequently occurs in palliative care environments; however, the acceptability of humor, particularly between patients and health care providers has not been previously examined. To explore the importance and acceptability of humor to participants who are patients in a palliative care context, the study determines if demographics are correlated with the degree of acceptability, and examines the acceptance of humor by patients with advanced illness when interacting with nurses or physicians. One hundred participants admitted to a palliative care unit or residential hospice were surveyed. Basic demographic data were collected, as well as responses on a five-point Likert scale to a variety of questions regarding the participants' attitudes about humor before and after their illness and the acceptability of humor in a palliative setting. Participants were also given the opportunity to comment freely on the topic of humor and the palliative experience. A large majority of participants valued humor highly both prior to (77%) and during (76%) their illness experience. Despite this valuation, the frequency of laughter in their daily lives diminished significantly as patients' illness progressed. Most participants remembered laughing with a nurse (87%) and a doctor (67%) in the week prior to the survey, and found humor with their doctors (75%) and nurses appropriate (88%). The vast majority of participants found humorous interactions with their health care providers acceptable and appropriate, and this may indicate a opportunity for enhanced and more effective end-of-life care in the future.
... medlineplus.gov/ency/patientinstructions/000365.htm Heart failure - palliative care To use the sharing features on this page, ... you may want to discuss the option of palliative or comfort care with your providers and loved ones. Many people ...
Kozlov, Elissa; Eghan, Claude; Moran, Sheila; Herr, Keela; Reid, M Carrington
To investigate how inpatient palliative care teams nationwide currently screen for and treat psychological distress. A web-based survey was sent to inpatient palliative care providers of all disciplines nationwide asking about their practice patterns regarding psychological assessment and treatment. Descriptive statistics were used to characterize the sample and responses, and analysis of variance was conducted to determine whether certain disciplines were more likely to utilize specific treatment modalities. A total of N = 236 respondents were included in the final analyses. Providers reported that they encounter psychological distress regularly in their practice and that they screen for distress using multiple methods. When psychological distress is detected, providers reported referring patients to an average of 3 different providers (standard deviation = 1.46), most frequently a social worker (69.6%) or chaplain (65.3%) on the palliative care team. A total of 84.6% of physicians and 54.5% of nurse practitioners reported that they prescribe anxiolytics or selective serotonin reuptake inhibitors to patients experiencing psychological distress. This study revealed significant variability and redundancy in how palliative care teams currently manage psychological distress. The lack of consistency potentially stems from the variability in the composition of palliative care teams across care settings and the lack of scientific evidence for best practices in psychological care in palliative care. Future research is needed to establish best practices in the screening and treatment of psychological distress for patients receiving palliative care.
Beng, Tan Seng; Chin, Loh Ee; Guan, Ng Chong; Yee, Anne; Wu, Cathie; Pathmawathi, Subramaniam; Yi, Kweh Ting; Kuan, Wong Sook; Jane, Lim Ee; Meng, Christopher Boey Chiong
A qualitative study was conducted with semistructured interviews to explore the experiences of stress in 20 palliative care providers of University Malaya Medical Centre in Malaysia. The results were thematically analyzed. Nine basic themes were generated: (1) organizational challenges, (2) care overload, (3) communication challenges, (4) differences in opinion, (5) misperceptions and misconceptions, (6) personal expectations, (7) emotional involvement, (8) death and dying thoughts, and (9) appraisal and coping. A total care model of occupational stress in palliative care was conceptualized from the analysis. This model may inform the development of interventions in the prevention and management of stress in palliative care. © The Author(s) 2013.
Jagt-van Kampen, Charissa T.; Kars, Marijke C.; Colenbrander, Derk A.; Bosman, Diederik K.; Grootenhuis, Martha A.; Caron, Huib N.; Schouten-van Meeteren, Antoinette Y. N.
Case management is a subject of interest within pediatric palliative care. Detailed descriptions of the content of this type of case management are lacking. We aim to describe the contents of care provided, utilization of different disciplines, and times of usage of a pediatric palliative care case
Kunirova, Gulnara; Shakenova, Ainur
In Kazakhstan, like most ex-Soviet Union countries palliative care began in the late 1990s with the opening of the Almaty Hospice in 1999. Since that time, several palliative care services have opened in urban centers, but there is little coverage in rural areas. Palliative care has grown because of the collaborative work of Parliament leaders, Ministry of Health, local governments officials, Public Health Higher School, National Center for Health Development, academic medical institutions, oncology and palliative care experts, NGOs, Soros Foundation Kazakhstan, and international experts. A National Palliative Care Strategy provides the legislative framework that mandates the components of palliative that must be available at no cost for patients living with cancer. Palliative care courses are provided in several of the medical universities and nursing schools with practical training in local hospices who also offer seminars each year to practicing health care professionals. There is no "palliative care" or "palliative medicine" specialty in the national classifier of specialties. There are a number of palliative care specialists who participated in various training courses outside Kazakhstan. Oral morphine is not registered or available in the country, and patients must depend on injectable opioids or patches. Going forward, additional policies, increased public awareness, education of health care professionals, access to oral opioids, and more inpatient, home care, and day care services are needed. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Mollica, Michelle A; Kent, Erin E; Castro, Kathleen M; Ellis, Erin M; Ferrer, Rebecca A; Falisi, Angela L; Gaysynsky, Anna; Huang, Grace C; Palan, Martha A; Chou, Wen-Ying Sylvia
Palliative care (PC) is often misunderstood as exclusively pertaining to end-of-life care, which may be consequential for its delivery. There is little research on how PC is operationalized and delivered to cancer patients enrolled in clinical trials. We sought to understand the diverse perspectives of multidisciplinary oncology care providers caring for such patients in a teaching hospital. We conducted qualitative semistructured interviews with 19 key informants, including clinical trial principal investigators, oncology fellows, research nurses, inpatient and outpatient nurses, spiritual care providers, and PC fellows. Questions elicited information about the meaning providers assigned to the term "palliative care," as well as their experiences with the delivery of PC in the clinical trial context. Using grounded theory, a team-based coding method was employed to identify major themes. Four main themes emerged regarding the meaning of PC: (1) the holistic nature of PC, (2) the importance of symptom care, (3) conflict between PC and curative care, and (4) conflation between PC and end-of-life care. Three key themes emerged with regard to the delivery of PC: (1) dynamics among providers, (2) discussing PC with patients and family, and (3) the timing of PC delivery. There was great variability in personal meanings of PC, conflation with hospice/end-of-life care, and appropriateness of PC delivery and timing, particularly within cancer clinical trials. A standard and acceptable model for integrating PC concurrently with treatment in clinical trials is needed.
Xu, Melody J; Su, David; Deboer, Rebecca; Garcia, Michael; Tahir, Peggy; Anderson, Wendy; Kinderman, Anne; Braunstein, Steve; Sherertz, Tracy
Familiarity with principles of palliative care, supportive care, and palliative oncological treatment is essential for providers caring for cancer patients, though this may be challenging in global communities where resources are limited. Herein, we describe the scope of literature on palliative oncological care curricula for providers in resource-limited settings. A systematic literature review was conducted using PubMed, Embase, Cochrane Library, Web of Science, Cumulative Index to Nursing and Allied Health Literature, Med Ed Portal databases, and gray literature. All available prospective cohort studies, case reports, and narratives published up to July 2017 were eligible for review. Fourteen articles were identified and referenced palliative care education programs in Argentina, Uganda, Kenya, Australia, Germany, the USA, or multiple countries. The most common teaching strategy was lecture-based, followed by mentorship and experiential learning involving role play and simulation. Education topics included core principles of palliative care, pain and symptom management, and communication skills. Two programs included additional topics specific to the underserved or American Indian/Alaskan Native community. Only one program discussed supportive cancer care, and no program reported educational content on resource-stratified decision-making for palliative oncological treatment. Five programs reported positive participant satisfaction, and three programs described objective metrics of increased educational or research activity. There is scant literature on effective curricula for providers treating cancer patients in resource-limited settings. Emphasizing supportive cancer care and palliative oncologic treatments may help address gaps in education; increased outcome reporting may help define the impact of palliative care curriculum within resource-limited communities.
Mônica Estuque Garcia de Queiroz
Full Text Available According to the World Health Organization (WHO, palliative care can be defined as active and totalcare measures that improve the life quality of patients with terminal diseases and their family/relatives, throughprevention and suffering relieve by means of early identification, adequate evaluation, and treatment of painand other physical, psychosocial and spiritual problems. This article deals with the attention of the occupationaltherapist in palliative care, as from the definition of this philosophy and its principles. The occupational therapist’spractice is described through the author’s theoretical and practical references. In palliative care, occupationaltherapy helps the patient and caregiver to deal with the difficulties mentioned and observed in order to achievegreater comfort, dignity and quality of life in the hospital or at home, in order to promote the maximum levelof independence and/or occupational performance with autonomy with the aim to improve the quality of life,despite the functional loss, cognitive, emotional and social.
Gorman, Rosemary D
Improved quality of life, care consistent with patient goals of care, and decreased health care spending are benefits of palliative care. Palliative care is appropriate for anyone with a serious illness. Advances in technology and pharmaceuticals have resulted in increasing numbers of seriously ill individuals, many with a high symptom burden. The numbers of individuals who could benefit from palliative care far outweighs the number of palliative care specialists. To integrate palliative care into primary care it is essential that resources are available to improve generalist palliative care skills, identify appropriate patients and refer complex patients to specialist palliative care providers. Copyright © 2016 Elsevier Inc. All rights reserved.
Trovo de Araújo, Monica Martins; da Silva, Maria Júlia Paes
The objective of this study is to verify the relevance and utilization of communication strategies in palliative care. This is a multicenter qualitative study using a questionnaire, performed from August of 2008 to July of 2009 with 303 health care professionals who worked with patients receiving palliative care. Data were subjected to descriptive statistical analysis. Most participants (57.7%) were unable to state at least one verbal communication strategy, and only 15.2% were able to describe five signs or non-verbal communication strategies. The verbal strategies most commonly mentioned were those related to answering questions about the disease/treatment. Among the non-verbal strategies used, the most common were affective touch, looking, smiling, physical proximity, and careful listening. Though professionals have assigned a high degree of importance to communication in palliative care, they showed poor knowledge regarding communication strategies. Final considerations include the necessity of training professionals to communicate effectively in palliative care.
Boersma, Isabel; Miyasaki, Janis; Kutner, Jean
Palliative care is an approach to the care of patients and families facing progressive and chronic illnesses that focuses on the relief of suffering due to physical symptoms, psychosocial issues, and spiritual distress. As neurologists care for patients with chronic, progressive, life-limiting, and disabling conditions, it is important that they understand and learn to apply the principles of palliative medicine. In this article, we aim to provide a practical starting point in palliative medicine for neurologists by answering the following questions: (1) What is palliative care and what is hospice care? (2) What are the palliative care needs of neurology patients? (3) Do neurology patients have unique palliative care needs? and (4) How can palliative care be integrated into neurology practice? We cover several fundamental palliative care skills relevant to neurologists, including communication of bad news, symptom assessment and management, advance care planning, caregiver assessment, and appropriate referral to hospice and other palliative care services. We conclude by suggesting areas for future educational efforts and research. PMID:24991027
Sharron L. Docherty
Full Text Available Palliative care for children and adolescents with cancer includes interventions that focus on the relief of suffering, optimization of function, and improvement of quality of life at any and all stages of disease. This care is most effectively provided by a multidisciplinary team. Nurses perform an integral role on that team by identifying symptoms, providing care coordination, and assuring clear communication. Several basic tenets appear essential to the provision of optimal palliative care. First, palliative care should be administered concurrently with curative therapy beginning at diagnosis and assuming a more significant role at end of life. This treatment approach, recommended by many medical societies, has been associated with numerous benefits including longer survival. Second, realistic, objective goals of care must be developed. A clear understanding of the prognosis by the patient, family, and all members of the medical team is essential to the development of these goals. The pediatric oncology nurse is pivotal in developing these goals and assuring that they are adhered to across all specialties. Third, effective therapies to prevent and relieve the symptoms of suffering must be provided. This can only be accomplished with accurate and repeated assessments. The pediatric oncology nurse is vital in providing these assessments and must possess a working knowledge of the most common symptoms associated with suffering. With a basic understanding of these palliative care principles and competency in the core skills required for this care, the pediatric oncology nurse will optimize quality of life for children and adolescents with cancer.
Rama, Rudina; Çarçani, Valbona; Prifti, Fatmir; Huta, Kristo; Xhixha, Ali; Connor, Stephen R
Sixty percent of cancer patients are diagnosed with advanced stages of disease and those diagnosed in early stages face challenges to receive adequate treatment. Palliative care has had significant developments in recent years in Albania because of a close partnership with the Ministry of Health, local nonprofit organizations, and the Open Society Foundation Albania. In 2011, a five-year action plan for palliative care as one of four parts of the National Cancer Control Plan was approved. At the end of 2014, the first palliative care law was approved by Parliament. Palliative care by-laws, documents, standards, clinical protocols, and guidelines for adults and children have been developed. Training and education are being provided to primary care professionals. Curricula on palliative care have been developed for the faculty of medicine, nursing high schools, and social work. About 80% of essential medications used in palliative care are available in Albania, 50% of these are paid for and have some access restrictions, and meanwhile the opiophobia still remains an enormous barrier. In the last three years, significant progress has been made in service provision. From only one public palliative care service in 2013, there are now eight palliative care services in eight of the 11 regional hospitals. By the end of 2016, it is expected that palliative care services will be available in all regional hospitals in the country. Copyright © 2017. Published by Elsevier Inc.
Gélinas, Céline; Fillion, Lise; Robitaille, Marie-Anik; Truchon, Manon
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.
Wharton, Tracy; Manu, Erika; Vitale, Caroline A
This article describes a pilot model to increase palliative care (PC) knowledge and collaboration among providers and to systematically identify chronic multimorbid home care patients who would benefit from focused discussion of potential PC needs. Thirty health care providers from a home-based primary care team attended interdisciplinary trainings. The Palliative Performance Scale (PPS) tool was used to trigger discussions of potential palliative needs at team rounds for patients who scored below a cutoff point on the tool. Palliative Performance Scale implementation added little burden on nurses and triggered a discussion in 51 flagged patients. The tool successfully identified 75% of patients who died or were discharged. Screening was systematic and consistent and resulted in targeted discussions about PC needs without generating additional burden on our PC consult service. This model shows promise for enhancing collaborative patient care and access to PC. © The Author(s) 2013.
Küpper, Anita-Luise; Hughes, Julian C
Palliative care seems the right approach to dementia, except that it suggests a dichotomy between cure and care. As in cancer care, supportive care provides a broader framework, viewing dementia from the time of diagnosis until death and bereavement. The challenge is to find the right approach to the individual. This challenge arises in the person's own home, in long-term care homes, and in hospitals. The challenging features of palliative care for older people with dementia are found in connection with the use of antibiotics, antipsychotics, and other medications, as well as in decisions about whether the person is in pain or in distress, or whether artificial feeding should be contemplated or not, as well as about the use of advance care plans. In short, the challenges are essentially ethical as well as clinical. The right approach will be the one that recognizes this facet of clinical care.
Comfort care; End of life - palliative care; Hospice - palliative care ... The goal of palliative care is to help people with serious illnesses feel better. It prevents or treats symptoms and side effects of disease ...
The aim of this project was to identify the support required by registered nurses and unregistered healthcare support workers to provide palliative care for people with dementia in an acute hospital in England. A quantitative approach was taken and participants were asked to fill in a questionnaire. Data were collated and analysed to identify support needs and any emerging themes. Respondents were confident in identifying the different stages of dementia. There was less confidence in identifying a patient with dementia for palliative care referral compared with a patient without dementia. Further needs were identified by respondents in supporting the family/carer of the person with dementia and being aware of available support to facilitate palliative care for people with dementia and support for end of life care (EoLC) planning. The findings suggest that further work is required in relation to dementia and EoLC. Practical and educational collaboration with EoLC/palliative care practitioners and dementia leads would be beneficial.
Smith, Alexander K; Ritchie, Christine S; Wallhagen, Margaret L
Age-related hearing loss can impair patient-provider communication about symptom management, goals of care, and end-of-life decision-making. To determine whether hospice and palliative care providers screen for or received training about hearing loss, believe it impacts patient care, and use strategies to optimize communication. This was a national survey of hospice and palliative care providers conducted via email and social media. Survey questions were pilot tested with multidisciplinary providers in San Francisco. Of 510 responses (55% age 50+ years, 65% female, 64% in practice 5+ years, 57% practiced hospital-based palliative care, 45% hospice), 315 were physicians, 50 nurses, 48 nurse practitioners, 58 social workers, and 39 chaplains. Ninety-one percent reported that hearing loss has some or great impact on the quality of care for older adults. Eighty-eight percent recalled a situation where hearing loss created a communication problem with a patient and 56% a communication problem with a caregiver. Eighty-seven percent of physicians, nurses, and nurse practitioners reported not screening for hearing loss. Although 61% felt comfortable with their communication skills for patients with hearing loss, only 21% reported having received formal training in its management, 31% were unfamiliar with resources for patients with hearing loss, and 38% had never heard of a pocket talker amplification device. Hospice and palliative medicine providers believe age-related hearing loss impacts care yet most do not screen. Although they feel they are managing well, few have formal training. Knowledge about management approaches and resources is suboptimal. Published by Elsevier Inc.
Jagt-van Kampen, Charissa T; Kars, Marijke C; Colenbrander, Derk A; Bosman, Diederik K; Grootenhuis, Martha A; Caron, Huib N; Schouten-van Meeteren, Antoinette Y N
BACKGROUND: Case management is a subject of interest within pediatric palliative care. Detailed descriptions of the content of this type of case management are lacking. We aim to describe the contents of care provided, utilization of different disciplines, and times of usage of a pediatric
... Grief & Loss Resources Hospice and Palliative Care > Palliative Care Palliative Care Palliative Care Questions and Answers Palliative Care Questions and Answers Question Palliative Care Hospice Care ...
Marc-Aurele, Krishelle L; English, Nancy K
This article explores the 2014 Institute of Medicine׳s recommendation concerning primary palliative care as integral to all neonates and their families in the intensive care setting. We review trends in neonatology and barriers to implementing palliative care in intensive care settings. Neonatal primary palliative care education should address the unique needs of neonates and their families. The neonatal intensive care unit needs a mixed model of palliative care, where the neonatal team provides primary palliative care and the palliative subspecialist consults for more complex or refractory situations that exceed the primary team׳s skills or available time. Copyright © 2017 Elsevier Inc. All rights reserved.
Full Text Available Cancer is the third highest cause of death in Kenya, preceded by infectious and cardiovascular diseases, and in most cases, diagnosed in later stages. Nurses are the primary caregivers, assessing and managing these patients in the clinic, in inpatient settings, and in rural and remote communities. While cancer rates remain high, the burden to the patient, the caregiver, and society as a whole continues to rise. Kenya's poverty complicates cancer even further. Many Kenyans are unaware of cancer's signs and symptoms, and limited diagnostic and treatment centers are available. Despite these barriers, there is still hope and help for those in Kenya, who suffer from cancer. The World Health Organization has stated that palliative care is a basic human right and nurses providing this care in Kenya are making efforts to support cancer patients' ongoing needs, in order to promote compassionate palliative care and prevent suffering. The purpose of this paper is to address the palliative care needs of patients with cancer in Kenya by providing education to nurses and influencing health-care policy and education at micro and macro levels. A case study weaved throughout will highlight these issues.
Balkin, Emily Morell; Kirkpatrick, James N; Kaufman, Beth; Swetz, Keith M; Sleeper, Lynn A; Wolfe, Joanne; Blume, Elizabeth D
While availability of palliative care consultation for children with advanced heart disease increases, little is known about cardiologist attitudes towards palliative care. We sought to describe perspectives of cardiologists regarding palliative care and to characterize their perceived competence in palliative care concepts. A cross-sectional survey of pediatric cardiologists and cardiac surgeons from 19 pediatric medical centers was performed. Overall response rate was 31% (183/589). Respondents had a median of 18 years of experience since medical school (range 2-49) and most practiced at academic centers (91%). Sixty-percent of respondents felt that palliative care consultations occur "too late" and the majority (85%) agreed that palliative care consultations are helpful. Barriers to requesting palliative care consultation were most frequently described as "referring to palliative care services too early will undermine parents' hope" (45%) and "concern that parents will think I am giving up on their child" (56%). Only 33% of cardiologists reported feeling "very" or "moderately" competent in prognosticating life expectancy while over 60% felt competent caring for children with heart disease around end of life, and nearly 80% felt competent discussing goals of care and code status. Greater perceived competence was associated with subspecialty (heart failure/intensivist vs. other) (OR 3.6, 95% CI 1.6-8.1, p = 0.003) and didactic training (OR 6.27, 95% CI 1.8-21.8, p = 0.004). These results underscore the need for further training in palliative care skills for pediatric cardiologists. Enhancing palliative care skills among cardiologists and facilitating partnership with subspecialty palliative care teams may improve overall care of children with advanced heart disease.
Kavalieratos, Dio; Mitchell, Emma M; Carey, Timothy S; Dev, Sandesh; Biddle, Andrea K; Reeve, Bryce B; Abernethy, Amy P; Weinberger, Morris
Although similar to cancer patients regarding symptom burden and prognosis, patients with heart failure (HF) tend to receive palliative care far less frequently. We sought to explore factors perceived by cardiology, primary care, and palliative care providers to impede palliative care referral for HF patients. We conducted semistructured interviews regarding (1) perceived needs of patients with advanced HF; (2) knowledge, attitudes, and experiences with specialist palliative care; (3) perceived indications for and optimal timing of palliative care referral in HF; and (4) perceived barriers to palliative care referral. Two investigators analyzed data using template analysis, a qualitative technique. We interviewed 18 physician, nurse practitioner, and physician assistant providers from 3 specialties: cardiology, primary care, and palliative care. Providers had limited knowledge regarding what palliative care is, and how it can complement traditional HF therapy to decrease HF-related suffering. Interviews identified several potential barriers: the unpredictable course of HF; lack of clear referral triggers across the HF trajectory; and ambiguity regarding what differentiates standard HF therapy from palliative care. Nevertheless, providers expressed interest for integrating palliative care into traditional HF care, but were unsure of how to initiate collaboration. Palliative care referral for HF patients may be suboptimal due to limited provider knowledge and misperceptions of palliative care as a service reserved for those near death. These factors represent potentially modifiable targets for provider education, which may help to improve palliative care referral for HF patients with unresolved disease-related burden.
... palliative care can help. What is pediatric palliative care? Pediatric palliative care is supportive care for children with serious ... health aides • Social workers • Nutritionists • Pharmacists Where is care provided? Palliative care can be provided in a hospital, during ...
Ghosh, Amrita; Dzeng, Elizabeth; Cheng, M Jennifer
Primary care physicians are often the first medical providers patients seek out, and are in an excellent position to provide primary palliative care. Primary palliative care encompasses basic skills including basic evaluation and management of symptoms and discussions about goals of care and advance care planning. Specialty palliative care consultation complements primary care by assisting with complex psychosocial-spiritual patient and family situations. This article reviews primary palliative care skill sets and criteria for when to consider referring patients to specialty palliative care and hospice services. Published by Elsevier Inc.
Giesbrecht, Melissa; Crooks, Valorie A; Williams, Allison
Recognising their valuable role as key informants, this study examines the perspectives of front-line palliative care providers (FLPCP) regarding a social benefit programme in Canada designed to support family caregivers at end-of-life, namely the Compassionate Care Benefit (CCB). The CCB's purpose is to provide income assistance and job security to family caregivers who take temporary leave from employment to care for a dying family member. Contributing to an evaluative study that aims to provide policy-relevant recommendations about the CCB, this analysis draws on semi-structured interviews undertaken in 2007/2008 with FLPCPs (n = 50) from across Canada. Although participants were not explicitly asked during interviews about their expectations of the CCB, thematic content analysis revealed 'expectations' as a key finding. Through participants' discussions of their knowledge of and familiarity with the CCB, specific expectations were identified and grouped into four categories: (1) temporal; (2) financial; (3) informational; and (4) administrative. Findings demonstrate that participants expect the CCB to provide: (1) an adequate length of leave time from work, which is reflective of the uncertain nature of caregiving at end-of-life; (2) adequate financial support; (3) information on the programme to be disseminated to FLPCPs so that they may share it with others; and (4) a simple, clear, and quick application process. FLPCPs hold unique expertise, and ultimately the power to shape uptake of the CCB. As such, their expectations of the CCB contribute valuable knowledge from which relevant policy recommendations can be made to better meet the needs of family caregivers and FLPCPs alike. © 2010 Blackwell Publishing Ltd.
Philip, Jennifer; Crawford, Gregory; Brand, Caroline; Gold, Michelle; Miller, Belinda; Hudson, Peter; Smallwood, Natasha; Lau, Rosalind; Sundararajan, Vijaya
Despite significant needs, patients with chronic obstructive pulmonary disease (COPD) make limited use of palliative care, in part because the current models of palliative care do not address their key concerns. Our aim was to develop a tailored model of palliative care for patients with COPD and their family caregivers. Based on information gathered within a program of studies (qualitative research exploring experiences, a cohort study examining service use), an expert advisory committee evaluated and integrated data, developed responses, formulated principles to inform care, and made recommendations for practice. The informing studies were conducted in two Australian states: Victoria and South Australia. A series of principles underpinning the model were developed, including that it must be: (1) focused on patient and caregiver; (2) equitable, enabling access to components of palliative care for a group with significant needs; (3) accessible; and (4) less resource-intensive than expansion of usual palliative care service delivery. The recommended conceptual model was to have the following features: (a) entry to palliative care occurs routinely triggered by clinical transitions in care; (b) care is embedded in routine ambulatory respiratory care, ensuring that it is regarded as "usual" care by patients and clinicians alike; (c) the tasks include screening for physical and psychological symptoms, social and community support, provision of information, and discussions around goals and preferences for care; and (d) transition to usual palliative care services is facilitated as the patient nears death. Our proposed innovative and conceptual model for provision of palliative care requires future formal testing using rigorous mixed-methods approaches to determine if theoretical propositions translate into effectiveness, feasibility, and benefits (including economic benefits). There is reason to consider adaptation of the model for the palliative care of patients with
To describe palliative care as part of comprehensive oncology nursing care. A review of the palliative care, oncology, and nursing literature over the past 10 years. Palliative care is mandated as part of comprehensive cancer care. A cancer diagnosis often results in distress in the physical, psychosocial, spiritual, and emotional domains of care. Oncology nurses are essential in providing palliative care from diagnosis to death to patients with cancer. They address the myriad aspects of cancer. With palliative care skills and knowledge, oncology nurses can provide quality cancer care. There are many opportunities in which oncology nurses can promote palliative care. Oncology nurses must obtain knowledge and skills in primary palliative care to provide comprehensive cancer care. Copyright © 2015 Elsevier Inc. All rights reserved.
Matthews, Michael; Peters, Cara; Lawson, Stephanie
Hospice and palliative care is a recent, but fast growing, industry in healthcare. Demographics suggest that hospice care will only increase. The purpose of this article is to examine strategic marketing initiatives hospice organizations currently employ. Data were collected at a hospice regional conference, capturing opinions from hospice organizations located in North and South Carolina. The results show that many hospice organizations do not have a dedicated marketing staff person, have a limited marketing budget, do not fully utilize all strategic planning tools, and have yet to differentiate themselves via branding. Implications of these findings for hospice providers are discussed.
Abstract The German National Hospice and Palliative Care Register was implemented in 2011 by the German Association for Palliative Medicine to provide a nationwide description of the quality of hospice and palliative care. Every year, the register joints data of daily palliative care for a period of at least 3 months per year or up to 30 palliative care patients per palliative care service (palliative care units, hospices, palliative care teams and palliative counselling services). The reg...
Barbera, Lisa; Hwee, Jeremiah; Klinger, Christopher; Jembere, Nathaniel; Seow, Hsien; Pereira, José
Little is known about the physician workforce providing palliative care in Canada, and in Ontario specifically. We developed an algorithm to identify palliative care physicians using administrative claims data and validated it against a reference sample. We then applied the algorithm to all general practitioners/family physicians (GP/FPs) in the province of Ontario to describe and quantify those identified by the algorithm. W e reviewed Ontario Health Insurance Plan claims from Jan. 1, 2008, to Dec. 31, 2011, to determine each physician's proportion of claims that were for palliative care. We empirically selected a data-driven cut-off, whereby physicians whose proportion of palliative care claims was above the threshold were defined as palliative care physicians. We validated the cut-off against a reference sample of physicians who self-identified as providing mostly palliative care in a study-specific survey. We then applied this algorithm to all GP/FPs in the province. We empirically selected 10% as the cut-off for the proportion of palliative care claims. This threshold had exceptional specificity and positive predictive value (97.8% and 90.5%, respectively) and adequate sensitivity (76.0%) when compared with the reference sample (n = 118). When applied to all GP/FPs in the province, the algorithm identified 276 practising mostly palliative care. Of these, 135 (48.9%) were women, 265 (96.0%) practised in urban locations, and 145 (52.5%) worked part time. Our algorithm readily identified and quantified the workforce of palliative care physicians in Ontario. Such a tool has numerous applications for both health service planners and researchers.
Campbell, L M; Amin, N N
This article draws on selected palliative care providers' views and experiences to reflect on the potential benefits and possible challenges of involving traditional healers in palliative care in rural areas of South Africa. There is increasing consensus that palliative care should be offered by a range of professional and non-professional healthcare givers. Including non-professionals such as traditional healers in a palliative care team may strengthen care provisioning as they have intimate knowledge of patients' local culture and spiritual beliefs. Employing the qualitative method of photo-elicitation, one-on-one discussions about the photographs taken by participants were conducted. The participants - 4 palliative care nurses and 17 home-based care workers - were purposively selected to provide in-depth information about their experiences as palliative caregivers in rural homes. Healthcare workers' experiences revealed that the patients they cared for valued traditional rituals connected to illness, dying, death and bereavement. Participants suggested that traditional healers should be included in palliative care training programs as they could offer appropriate psychological, cultural and spiritual care. A challenge identified by participants was the potential of traditional healers to foster a false sense of longevity in patients facing death. The importance of recognising the value of traditional practices in palliative care should not be underrated in rural South Africa. Traditional healers could enhance palliative care services as they have deep, insider knowledge of patients' spiritual needs and awareness of cultural practices relating to illness, death, dying and bereavement. Incorporating traditional healers into healthcare services where there are differences in the worldviews of healthcare providers and patients, and a sensitivity to mediate cultural differences between caregivers and patients, could have the benefit of providing appropriate care in
... among the care team social workers who offer counseling, help families navigate the health care system, and provide ... to spiritual beliefs; they can also provide grief counseling massage therapists who promote relaxation, help patients and families manage stress, and provide pain ...
... emotional distress. A special type of care called palliative care is available to help you get relief from these and other symptoms. You can receive palliative care at any stage of your serious illness, including ...
Mukambetov, Aibek; Sabyrbekova, Taalaigul; Asanalieva, Lola; Sadykov, Ilim; Connor, Stephen R
Palliative care began in Kyrgyzstan in 2005 as a pilot home-based care program in Osh Cancer Center and was supported by a small group of nurses and one physician from Scotland. In 2010, the Soros Foundation-Kyrgyzstan and the Open Society Foundation's International Palliative Care Initiative began supporting work on palliative care policy, legislation, essential medicine availability, education, advocacy, and implementation. A Ministry of Health working group was established to lead this initiative, and technical assistance was provided by an international palliative care consultant. Work began with a national needs assessment, which identified the existing barriers to the provision of quality palliative care, and recommendations were made to the working group to address these challenges. Today, palliative care is included in many national health care policies and laws, a national palliative care association has been established, undergraduate medical and nursing education include elements of palliative care, oral morphine and fentanyl patches are now available in parts of the country, inpatient services exist in the National Cancer Center in Osh and Bishkek, two tuberculosis hospitals with multidrug resistant/extensively drug resistant, and home care services in Osh and Bishkek. Public information campaigns and advocacy activities continue to increase public awareness about palliative care and press government action. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Keefer, Patricia; Lehmann, Katie; Shanley, Maureen; Woloszyk, Tara; Khang, Erin; Luckritz, Kera; Saul, D'Anna
End-stage renal disease (ESRD) affects nearly 1400 new children each year in the United States. Morbidity and mortality rates remain high for pediatric patients with ESRD, including those that have received a renal transplant. To better understand ESRD patients referred to palliative care, including their physical symptoms, topics discussed, and themes emerging during initial palliative care consultation. This study is a retrospective chart review of pediatric ESRD patients who received a palliative care consult. Physical symptoms, core topics, and themes were identified by the interprofessional study team. The study team found 35 patients met inclusion criteria during the study period. The most common standard palliative care metric noted was "complex or time-intensive communication and interdisciplinary social support." Pain was the most common physical symptom addressed with goals of care and communication the most common topics discussed. Themes emerging described the emotional distress of patients and parents as well as prognostic discussions. This study demonstrates one institution's experience with pediatric ESRD patients undergoing consultation with the pediatric palliative care service. More research is necessary in this population to better describe the best focus for palliative care teams.
Fainsinger, R. L.; Bruera, E.; MacMillan, K.
PROBLEM BEING ADDRESSED: Access to palliative care in Edmonton has been hampered by uneven development, poor distribution of services, and more recently, economic restraints. Family physicians' involvement in palliative care has been hindered by the variety of access points, poor coordination, and inadequate reimbursement for time-consuming and difficult patient care situations. OBJECTIVE OF PROGRAM: To provide high-quality palliative care throughout Edmonton in all settings, with patients ab...
Full Text Available Adolescents and young adults with cancer are a heterogeneous group. Management of this special group requires a broad-based interdisciplinary clinical team, which should include palliative care (PC, psychology, social work, oncology, and nursing representatives. The function of PC is to provide impeccable pain and other symptom control and to coordinate care as the disease progresses. The cure rate of cancer in adolescents is high but between 10% and 40% of them will develop incurable disease depending on tumor type and prognostic factors. PC in adolescents should also take care of the specific physical and psychosocial developmental changes in this age group. A 16-year old boy suffered with incurable disease and team has provided the PC at the door step taken as a case study.
Mistry, Bina; Bainbridge, Daryl; Bryant, Deanna; Tan Toyofuku, Sue; Seow, Hsien
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.
Bergenholtz, Heidi; Jarlbæk, Lene; Hølge-Hazelton, Bibi
Background: It can be challenging to provide generalist palliative care in hospitals, owing to difficulties in integrating disease-orientedtreatment with palliative care and the influences of cultural and organisational conditions. However, knowledge on the interactionsthat occur is sparse. Aim......: To investigate the interactions between organisation and culture as conditions for integrated palliative care in hospital and, ifpossible, to suggest workable solutions for the provision of generalist palliative care. Design: A convergent parallel mixed-methods design was chosen using two independent studies...... hospital with 29 department managements and one hospital management. Results: Two overall themes emerged: (1) ‘generalist palliative care as a priority at the hospital’, suggesting contrasting issues regardingprioritisation of palliative care at different organisational levels, and (2) ‘knowledge and use...
Håkanson, Cecilia; Sandberg, Jonas; Ekstedt, Mirjam; Kenne Sarenmalm, Elisabeth; Christiansen, Mats; Öhlén, Joakim
Despite high frequencies of multiple, life-limiting conditions relating to palliative care needs, people who are homeless are one of the most underserved and rarely encountered groups in palliative care settings. Instead, they often die in care places where palliative competence is not available. In this qualitative single-case study, we explored the conditions and practices of palliative care from the perspective of staff at a Swedish support home for homeless people. Interpretive description guided the research process, and data were generated from repeated reflective conversations with staff in groups, individually, and in pairs. The findings disclose a person-centered approach to palliative care, grounded in the understanding of the person's health/illness and health literacy, and how this is related to and determinant on life as a homeless individual. Four patterns shape this approach: building trustful and family-like relationships, re-dignifying the person, re-considering communication about illness and dying, and re-defining flexible and pragmatic care solutions. © The Author(s) 2015.
Morrison, Laura J; Calvin, Amy O; Nora, Hope; Porter Storey, C
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.
Vater, Laura B; Rebesco, Gina; Schenker, Yael; Torke, Alexia M; Gramelspacher, Gregory
Professional guidelines recommend that palliative care begin early in advanced cancer management, yet integration of palliative and cancer care remains suboptimal. Cancer centers may miss opportunities to provide palliative care information online. In this study, we described the palliative care content on cancer center websites. We conducted a systematic content analysis of 62 National Cancer Institute- (NCI) designated cancer center websites. We assessed the content of center homepages and analyzed search results using the terms palliative care, supportive care, and hospice. For palliative and supportive care webpages, we assessed services offered and language used to describe care. Two researchers analyzed all websites using a standardized coding manual. Kappa values ranged from 0.78 to 1. NCI-designated cancer center homepages presented information about cancer-directed therapy (61%) more frequently than palliative care (5%). Ten percent of cancer centers had no webpage with palliative care information for patients. Among centers with information for patients, the majority (96%) defined palliative or supportive care, but 30% did not discuss delivery of palliative care alongside curative treatment, and 14% did not mention provision of care early in the disease process. Cancer center homepages rarely mention palliative care services. While the majority of centers have webpages with palliative care content, they sometimes omit information about early use of care. Improving accessibility of palliative care information and increasing emphasis on early provision of services may improve integration of palliative and cancer care.
Aquilina, Francesca Falzon; Agius, Mark
The Dementias are common neurodegenerative diseases which gradually deteriorate and eventually become fatal. However, hospice care is usually made available to patients suffering from Cancer, while patients who suffer from other chronic conditions such as dementia are not usually offered such care. However the lessons which have been learnt regarding hospice palliative care could be applied with some modification to the care of patients with Dementia. This article attempts to discuss the present literature about palliative care in Dementia, in order to clarify the evidence which underlies the European Association for Palliative Care 'White paper defining optimal palliative care in older people with dementia'.
Restau, Jame; Green, Pamela
Most patients who receive terminal care in the intensive care setting die after withdrawing or limiting of life-sustaining measures provided in the intensive care setting. The integration of palliative care into the intensive care unit (ICU) provides care, comfort, and planning for patients, families, and the medical staff to help decrease the emotional, spiritual, and psychological stress of a patient's death. Quality measures for palliative care in the ICU are discussed along with case studies to demonstrate how this integration is beneficial for a patient and family. Integrating palliative care into the ICU is also examined in regards to the complex adaptive system. Copyright © 2014 Elsevier Inc. All rights reserved.
Gherman, Liliana; Pogonet, Vadim; Soltan, Viorel; Isac, Valerian
The article describes the important steps of palliative care development in Moldova, the current status, main achievements and challenges to be addressed in the future. It covers background information, policy development, medicines access and availability, education, and training, as well as services' provision. Palliative care development in Moldova registered real progress in spite of frequent political changes at governmental levels and difficulties to ensure the continuity of the development process during the last 10 years. However, the unmet need for palliative care for patients with life-limiting illnesses from different disease and age groups remains high. Further effort is needed to increase the availability and access to opioid analgesics and other essential palliative care medications. Government commitment and support, together with adequate funding, trained and educated health care professionals, and easy access to and availability of medicines, are essential to ensure the successful implementation of palliative care services nationwide, and to deliver the most appropriate qualitative palliative care for patients. To speed up palliative care development, a national strategy on palliative care development should be considered. The authors took part and continue to be involved in different ways in palliative care development in the country. Copyright © 2017. Published by Elsevier Inc.
Sláma, Ondřej; Kabelka, Ladislav; Loučka, Martin
In the Czech Republic more than 70,000 patients with chronic incurable diseases need palliative care each year. In 50,000 this need is manageable in the context of general palliative care, 20,000 patients would greatly benefited from specialized palliative care. Most chronically ill patients (> 60 %) died in acute or post acute inpatient health care facilities. Here s the availability and quality of palliative care varies substantially. Inpatient hospices provide end of life palliative care to less than 3000 patients each year. Outpatient and mobile specialized palliative care services are available only to a few hundreds of patients.In the year 2016 palliative care at the appropriate professional level ("state of art") is not a generally available and guaranteed within Czech health care and social system. We perceive an urgent need for the systematic development of general and specialized palliative care at the level of education, healthcare organization and the development of new health and social services.
Full Text Available "If you want to travel quickly, go alone. But if you want to travel far, you must go together". African proverb. The delivery of palliative care is often complex and always involves a group of people, the team, gathered around the patient and those who are close to them. Effective communication and functional responsive systems of care are essential if palliative care is to be delivered in a timely and competent way. Creating and fostering an effective team is one of the greatest challenges for providers of palliative care. Teams are organic and can be life giving or life sapping for their members.
Grønvold, Mogens; Adsersen, Mathilde; Hansen, Maiken Bang
Aims: The aim of the Danish Palliative Care Database (DPD) is to monitor, evaluate, and improve the clinical quality of specialized palliative care (SPC) (ie, the activity of hospital-based palliative care teams/departments and hospices) in Denmark. Study population: The study population is all......, and the patient-reported European Organisation for Research and Treatment of Cancer Quality of Life Questionaire-Core-15-Palliative Care questionnaire, assessing health-related quality of life. The data support the estimation of currently five quality of care indicators, ie, the proportions of 1) referred......-Core-15-Palliative Care at admission to SPC, and 5) patients who were discussed at a multidisciplinary conference. Descriptive data: In 2014, all 43 SPC units in Denmark reported their data to DPD, and all 9,434 cancer patients (100%) referred to SPC were registered in DPD. In total, 41,104 unique cancer...
Palliative care concentrates on supporting and helping people with an incurable disease and aims to improve patient’s quality of life by reducing or eliminating pain and other physical symptoms. Palliative care is a new phenomenon in Romania . PhD student Luminita Dumitrescu describes the
... With the close communication that palliative care provides, families are better able to choose options that are in line with their values, traditions and culture. This improves the well-being of ...
Fitch, Margaret I; Fliedner, Monika C; O'Connor, Margaret
Nurses have an integral role in promoting and providing early palliative care. The provision of palliative care is aligned to the basic tenants of nursing in providing holistic care to individuals and family members. In many parts of the world nurses are the primary health care provider in a community and a primary link between patients and other members of the heath care team. Unfortunately, access to accredited palliative care education remains a challenge for nurses.
Beringer, A J; Eaton, N M; Jones, G L
Children's palliative care services have recently been awarded fixed-term grants, aimed at improving the provision of care for children with life-limiting conditions in the community. We report findings of a qualitative study to investigate the experience of a cohort of community children's nurses from teams involved in setting up or extending community-based children's palliative care services. The purpose of the study was to identify factors that affect service delivery, from the staff perspective, and to suggest ways of promoting their sustainable development. Semi-structured telephone interviews were conducted with 21 nurses from 12 different teams providing palliative care for children at home and in hospices. Participants were questioned about the services they provided and their own roles in that provision. NVIVO qualitative data analysis software was used to explore themes arising from the transcribed recorded interviews. Key findings were the importance of physical location in facilitating multidisciplinary communication, the importance of defining role boundaries between existing and new providers of children's palliative care, and the potentially detrimental impact of insecure funding on referral patterns and recruitment to posts. Staff named the opportunity to offer direct 'hands-on' care to families, access to work-based support and networking opportunities as important factors in helping them cope with the stresses involved in managing finite resources and the emotional challenges of their work. The maintenance of a mixed caseload with a significant proportion of direct care, provision of ongoing support and clearly defined roles are recommended as means of bolstering the ability of staff to develop their services. The deliberate locating of services to enhance communication between staff and guidance on the preparation of funding applications may further contribute to the sustainability of these services.
Thayyil, Jayakrishnan; Cherumanalil, Jeeja Mathummal
For the first time in India, a Pain and Palliative Care policy to guide the community-based home care initiatives was declared by the Government of Kerala state. In Kerala, majority of the panchayats (local self-governments) are now conducting home-based palliative care as part of primary health care. National focus domain areas in palliative care research are structure and process, the physical aspects, and also the social aspects of care. The study was conducted to assess the patient's status and the services provided by palliative home care. The descriptive study was conducted at Mavoor panchayat-Kozhikode district of Kerala, India by collecting information from the case records, nurses diary notes of all enrolled patients. Collecting information from the case records, nurses diary notes of all enrolled patients. The data were entered using Microsoft excel for Windows XP and analyzed using SPSS 16.0 (Statistical Package for Social Sciences; SPSS Inc., Chicago, IL, USA). Totally, 104 patients were enrolled. Diagnosis wise major category was degenerative diseases. There were 27% persons suffering from cerebrovascular accidents, 15.3% with malignancies, 8.7% with coronary artery disease, 5.8% with complications of diabetes, and 8.7% were with fracture of bones. The major complaints were weakness (41.3%), tiredness (31.7%), and pain (27%). Twenty-five percent persons complained of urinary incontinence, 12.5% complained of ulcer, 10.6% of edema, and 9.6% of mental/emotional agony. The activity of daily living status was as follows. Twenty-five percent subjects were completely bed ridden. 5.8% were feeding through Ryles tube, 16.3% had urinary incontinence, 9.6% were having no bowel control. The service could address most of the medical, psychosocial, and supportive needs of the patients and reduce their pain and symptoms. The interface between institutional-based care and home care needs more exploration and prospective studies.
Knight, Carl; Albertsen, Andreas
Palliative care serves both as an integrated part of treatment and as a last effort to care for those we cannot cure. The extent to which palliative care should be provided and our reasons for doing so have been curiously overlooked in the debate about distributive justice in health and healthcar...... to provide pain relief to those who need it as a supplement to treatment and, without justice-based reasons to provide palliative care to those whose opportunities cannot be restored. We conclude that this makes Daniels' framework much less attractive.......Palliative care serves both as an integrated part of treatment and as a last effort to care for those we cannot cure. The extent to which palliative care should be provided and our reasons for doing so have been curiously overlooked in the debate about distributive justice in health and healthcare....... We argue that one prominent approach, the Rawlsian approach developed by Norman Daniels, is unable to provide such reasons and such care. This is because of a central feature in Daniels' account, namely that care should be provided to restore people's opportunities. Daniels' view is both unable...
Full Text Available This paper shows how palliative care developed as a reaction to the compartimentalized technical approach of modern medicine. But what does it mean if we say palliative care wants to treat patients as whole persons? A few pitfalls need to avoided. All disciplines involved in palliative care should act within the limits of their own specific professional role. Physicians and nurses should certainly not force patients into spiritual or religious discussions or practices. They should understand that religion and spirituality also influence the ethical (and thus medical choices people make, respect their own conscience and worldview too and cultivate conscious compassion.
Dementia is a highly prevalent, progressive, life-limiting illness for which there is no cure. Palliative care is a specialized area of healthcare that focuses on improving the quality of life for individuals with life-limiting diseases. Symptoms such as disorientation, tension, and anxiety occur in patients with dementia at moderate to severe levels as they approach the end of their lives, as well as other common symptoms found with cancer patients, yet the dementia population continues to be unrecognized for their need for palliative care. This article examines current literature with respect to palliative care for patients with dementia.
Knies, Andrea K; Hwang, David Y
Many neurocritically ill patients and their families have high amounts of palliative care needs. Multiple professional societies relevant to neurocritical care have released consensus statements on meeting palliative care needs in neuroscience intensive care units. In this review, the authors discuss the ongoing debate regarding what model of palliative care delivery is optimal, focus on the process of shared decision making during goals-of-care discussions, and briefly comment on transitions from intensive care to comfort care. Regardless of an institution's model of palliative care practice, every neurocritical care clinician should possess core competencies necessary to provide basic, integrative palliative care for neurocritically ill patients. Given the high proportion of neurocritically ill patients who lack decision-making capacity, communication skills that enable clinicians to facilitate shared decision making with patients' surrogates are of particular relevance, especially when the limitation of life support is in the discussion. High-quality decision aids to assist neurocritical care teams and surrogate decision makers during common goals-of-care discussions may have the potential for further promotion of best palliative care practices. Thieme Medical Publishers 333 Seventh Avenue, New York, NY 10001, USA.
Dennis, Kristopher; Librach, S Lawrence; Chow, Edward
The timely integration of palliative care services into standard oncology care is essential to providing comprehensive individualized care for patients with advanced and incurable cancer and their families...
Jayakrishnan Thayyil; Jeeja Mathummal Cherumanalil
Context: For the first time in India, a Pain and Palliative Care policy to guide the community-based home care initiatives was declared by the Government of Kerala state. In Kerala, majority of the panchayats (local self-governments) are now conducting home-based palliative care as part of primary health care. National focus domain areas in palliative care research are structure and process, the physical aspects, and also the social aspects of care. Aims: The study was conducted to assess the...
Robinson, Jackie; Gott, Merryn; Gardiner, Clare; Ingleton, Christine
Nursing is the largest regulated health professional workforce providing palliative care across a range of clinical settings. Historically, palliative care nursing has been informed by a strong philosophy of care which is soundly articulated in palliative care policy, research and practice. Indeed, palliative care is now considered to be an integral component of nursing practice regardless of the specialty or clinical setting. However, there has been a change in the way palliative care is provided. Upstreaming and mainstreaming of palliative care and the dominance of a biomedical model with increasing medicalisation and specialisation are key factors in the evolution of contemporary palliative care and are likely to impact on nursing practice. Using a critical reflection of the authors own experiences and supported by literature and theory from seminal texts and contemporary academic, policy and clinical literature, this discussion paper will explore the influence of philosophy on nursing knowledge and theory in the context of an evolving model of palliative care.
Clark, W David
The American Board of Medical Specialties has recently recognized palliative medicine as a new subspecialty. Family Medicine was one of 10 specialty boards cosponsoring this certification process. The role of the family physician has many parallels in the care of pregnant and dying patients. The family physician that has provided maternity care can apply his or her experiences to their care of the dying. The reader is invited to consider this possibility as part of an intentional transition to palliative medicine.
Reygan, Finn C G
OBJECTIVE: The international literature points to the specific cancer risks and palliative care needs of lesbian, gay and bisexual (LGB) populations. However, with the exception of a programme in the USA, there is a lack of training internationally for health and social care professionals providing oncological and palliative care to LGB patients. In Ireland, a training project funded by the Irish Cancer Society, the Irish Hospice Foundation and the Health Service Executive developed a training pilot programme for health and social care professionals providing oncological and palliative care to LGB patients. METHODS: Over 200 (N = 201) oncology and palliative care staff participated in 17 brief, 50-min trainings in pilot sites. Evaluation of the training included self-report questionnaires at the end of each training and an evaluation interview with one participant from each of the four sites. RESULTS: The majority of participants reported that they would recommend the training to their colleagues, were interested in further training in the area and found the training useful for their practice. They also reported becoming more familiar with LGB-related language and terminology, became more knowledgeable of LGB health issues and reported becoming more confident in providing care to LGB patients. CONCLUSIONS: Recommendations are that the training be made available across the health services in Ireland and included in postgraduate courses for trainee health and social care professionals. Copyright © 2012 John Wiley & Sons, Ltd.
Lefkowits, Carolyn; Solomon, Caroline
Palliative care is specialized care for people with life-limiting illness; it focuses on symptom management and quality of life and ensures that a patient's care is concordant with her goals and values. Unlike end-of-life care, palliative care can be offered concurrently with disease-directed therapies, including when the goal is cure. Obstetrics and gynecology patients for whom palliative care is most appropriate include women with gynecologic cancer and women with a fetus or neonate with a potentially life-limiting illness. Integration of palliative care for these patients offers both clinical and health care utilization benefits, including improved symptom management, improved quality of life, and high-value care. Palliative care can be provided by palliative care specialists (specialty palliative care) or by the team treating the life-limiting illness (primary palliative care), depending on the complexity of the need. Health care providers caring for patients with life-limiting illness, including obstetrician-gynecologists, must possess a basic primary palliative care skill set, including symptom management for common symptoms such as pain and nausea and communication skills such as breaking bad news. This skill set must be taught and evaluated during training and used consistently in practice to ensure that our patients receive truly comprehensive care.
Shimizu, Megumi; Nishimura, Misako; Ishii, Yoko; Kuramochi, Masayo; Kakuta, Naoe; Miyashita, Mitsunori
Although educational programs for nurses are required to ensure high-quality home care, there is currently no scale to appropriately evaluate such programs for home care nurses providing palliative care. We developed and validated four scales to evaluate home care nurses' attitude, self-reported practices, difficulties, and knowledge regarding home palliative cancer care, and identified factors associated with home care nurses' attitude, self-reported practices, and difficulties. The scale items were generated based on literature review and a cross-sectional questionnaire survey was conducted. Experienced home care nurses from visiting nurse stations who enrolled in a home palliative care educational program were recruited for this survey. Of the 125 questionnaires delivered to home care nurses, 122 were returned (response rate, 98%). After factor analysis, the scale for attitude comprised four domains with 12 items, the scale for self-reported practices comprised six domains with 26 items, and the scale for difficulties comprised five domains with 18 items. Cronbach's alphas for these scales were 0.61-0.70. After using the Item Response Theory model, the scale for knowledge was found to comprise 26 items. The multiple logistic regression model showed that experience in caring for terminal patients at home or in hospitals were associated with having more positive attitude, higher self-reported practices and lower difficulties. We developed valid and reliable scales to evaluate home care nurses' attitude, self-reported practices, difficulties, and knowledge regarding home palliative cancer care. These scales potentially useful for evaluating a home palliative cancer care education program for nurses. Copyright © 2016 Elsevier Ltd. All rights reserved.
Dahlin, Constance; Coyne, Patrick J; Cassel, J Brian
Nationally, the contribution of palliative care to high-quality health care continues to be recognized resulting in demand for palliative care services. This has resulted in an expected shortage of clinicians with palliative care knowledge and experience. The education and scope of practice of advanced practice registered nurses (APRNs) provides an ideal foundation for further palliative care education and training to fill this gap. The authors sought a method to provide midcareer APRNs with education and training in primary palliative care. The program took place at a well-established palliative care program at an academic medical center. This article describes an Institutional Review Board-approved week-long intensive APRN externship designed to provide education and training in primary palliative care for APRNs across disease populations. To best educate these APRNs, who did not have formal palliative care in their graduate education, the externship includes didactic, experiential, and clinical components to meet the needs of APRNs with minimal palliative care education and/or experiences. Precourse and postcourse data collection was performed. Results demonstrated increased knowledge, skills, and confidence in palliative care. This is a sustainable model for primary palliative care and midcareer APRNs who wish to enter palliative care. It is replicable for other disciplines as well.
Swidler, Mark A
Elderly patients with advanced chronic kidney disease or who are on dialysis should be able to live as fully and comfortably as possible. Geriatric patients are most interested in outcomes that will optimize mental and physical function and limit suffering and pain. Nephrologists must help them answer the question: "How will my kidney problem affect the way I live now and in the future?" This means management must move beyond glomerular filtration rate-related targets and incorporate geriatric principles that focus on assessment of function, comorbidities, geriatric syndromes, and quality of life issues. Therapeutic decisions should be individualized and directed by patient goals of care, which must be explored and documented. Accomplishing this requires inclusion of the patient's family-support system in the shared decision-making process. There is no substitute for spending time listening to and understanding the patient and family agenda, providing timely medical and prognostic updates; discussing realistic scenarios to balance expectations; and planting the seeds of change as the quantity and quality of medical events, geriatric syndromes, and comorbidities accumulate. Synergy of the interdisciplinary renal team with geriatric and palliative medicine specialists provides the expertise to achieve these goals. This falls into the domain of geriatric renal palliative or supportive care (1) and is the subject of this practical review.
Chellappan, Sheeba; Ezhilarasu, Punitha; Gnanadurai, Angela; George, Reena; Christopher, Solomon
A large proportion of cancer deaths occur in the developing world, with limited resources for palliative care. Many patients dying at home experience difficult symptoms. The objective of this study was to assess the feasibility of a structured training program on symptom management along with an acute symptom management kit for primary caregivers of cancer patients receiving home care. Descriptive design was used. Thirty primary caregivers of cancer patients attending the palliative care clinic in Vellore, South India, were provided training on the administration of drugs for acute symptoms. A plastic box with partitions for drugs specific to symptom was provided. On follow-up visits, the usage of the kit, drugs used, and routes of administration were noted. A structured questionnaire with a 4-point scale was used to assess primary caregiver views and satisfaction. Of primary caregivers, 96.7% used a kit. The common medications used were morphine, metoclopramide, dexamethasone, and benzodiazepines. Seventy-three percent of primary caregivers administered subcutaneous injections at home. Hospital visits for acute symptoms reduced by 80%; 90% were satisfied with the training received; 73% stated it was not a burden to treat the patient at home. The training program and acute symptom management kit were favorably received and appropriately used by caregivers of diverse backgrounds. Rural backgrounds and illiteracy were not barriers to acceptance. Healthcare professionals should train caregivers during hospital visits, empowering them to manage acute symptoms and provide simple nursing care. This is doubly important in countries where resources are limited and palliative care facilities scarce.
Gonçalves, Ferraz; Mozes, Mónica; Saraiva, Isabel; Ramos, Cristina
In palliative care, gastrostomies are used to provide nutritional support or to decompress the bowel. To evaluate what happened to the patients monitored at our palliative care unit (PCU) who underwent gastrostomy between October 1994 and January 2005, a retrospective audit was made. The charts of 154 patients were reviewed. The most frequent reason why a patient underwent a gastrostomy was dysphagia due to head and neck and/or esophageal cancer. Only one patient underwent a drainage gastrostomy because of intestinal obstruction. Interventional radiology performed 96% of the gastrostomies. Early complications occurred in 53 patients (34%) who underwent the gastrostomy for feeding and the most common was local pain, usually mild. However, there was one death due to peritonitis, probably related with the procedure. Late complications also occurred in 53 patients and major complications occurred in 22 patients, the most common was extrusion. The median survival after the performance of the gastrostomy was 61 days (range 1 to 551 days). Nineteen patients (12%) survived 1 week or less, 28 (18%) between 8 and 30 days, 51 (33%) from 31 to 90 days, 53 (35%) 91 days or more, and one unknown. The patient who underwent a gastrostomy for bowel obstruction survived for only 7 days. One hundred and twenty-five patients (81%) died at the PCU, 26 (17%) at home, and four (3%) at other places.
Sandgathe Husebø, B; Husebø, S
Red Cross Clinic is the largest geriatric center in Norway (240 beds). Major parts of the center are: long time geriatric ward (215 beds), rehabilitation and acute ward (25 beds), day clinic (45 patients) and a teaching and research unit. A palliative care unit (10 beds) will be opened in spring 2000. In mai 1998 a national project: Palliative care for the elderly was opened at our center. The projects main goal is to develop and support proper palliative care to all severe ill and dying patients in Norway. In a prospective study we examined 179 consecutive deaths between 1998 and 1999. Average age was 84.5. Major symptom problems were pain, dyspnoea, death-rattle and anxiety. In the last 24 hours 83% of the patients received opioids, 67% of the cases morphine (mean daily dosage 31.8 mg). 37% of the patients received scopolamine (mean daily dosage 0.8 mg), 12% benzodiazepines and 3% of the patients haloperidol. 152 (85%) of the deaths were expected, 27 (15%) unexpected. In 137 patients (77%) open, honest, frank communication with patient or their nearest kin regarding the imminent death was possible. In our experience it is a myth that the relatives want doctors to practise "maximal therapy". All old patients in geriatric clinics and nursing homes need palliative care. We have found no international textbooks of geriatrics with chapters on palliative care or textbooks on palliative care with chapters on the elderly. They need doctors and nurses who are properly trained and educated in palliative care. In most countries in Europe this training and education is not provided.
Despite significant advances in understanding the benefits of early integration of palliative care with disease management, many people living with a chronic life-threatening illness either do not receive any palliative care service or receive services only in the last phase of their illness. In this article, I explore some of the reasons for failure to provide palliative care services and recommend some strategies to overcome these barriers, emphasizing the importance of describing palliative care accurately. I provide language which I hope will help health care professionals of all disciplines explain what palliative care has to offer and ensure wider access to palliative care, early in the course of their illness. PMID:28469439
Brazil, Kevin; Galway, Karen; Carter, Gillian; van der Steen, Jenny T
The European Association for Palliative Care (EAPC) recently issued a framework that defines optimal palliative care in dementia. However, implementation of the guidelines may pose challenges for physicians working with dementia patients in practice. To measure and compare the perceptions of physicians in two European regions regarding the importance and challenges of implementing recommendations for optimal palliative care in dementia patients. Cross-sectional observational study. The Netherlands and the United Kingdom. Physicians (n = 317) providing palliative care to patients with dementia. Postal survey. Physicians in the Netherlands and Northern Ireland (NI), United Kingdom, prioritized the same domains of optimal palliative care for dementia and these match the priorities in the EAPC-endorsed guidelines. Respondents in both countries rated lack of education of professional teams and lack of awareness of the general public among the most important barriers to providing palliative care in dementia. NI respondents also identified access to specialist support as a barrier. The results indicate that there is a strong consensus among experts, elderly care physicians, and general practitioners across a variety of settings in Europe that person-centered care involving optimal communication and shared decision making is the top priority for delivering optimal palliative care in dementia. The current findings both support and enhance the new recommendations ratified by the EAPC. To take forward the implementation of EAPC guidelines for palliative care for dementia, it will be necessary to assess the challenges more thoroughly at a country-specific level and to design and test interventions that may include systemic changes to help physicians overcome such challenges.
Peng, Jen-Kuei; Chiu, Tai-Yuan; Hu, Wen-Yu; Lin, Cheng-Chieh; Chen, Ching-Yu; Hung, Shou-Hung
Community physicians have a vital role in delivering palliative care, yet their willingness and factors that influence its provision have rarely been explored. Our aims were to identify the willingness of community physicians to provide palliative care for patients with terminal cancer and to investigate the factors that influence their willingness to provide such care. Through a structured questionnaire, this nationwide study surveyed 708 community physicians who were potential pilots to provide palliative care. Four hundred and ten valid questionnaires (58.0%) were retrieved and analysed. The majority of respondents expressed a willingness (92.4%) to provide palliative care if they encountered patients with terminal cancer. However, they would limit their services to consultation (83.4%) and referral (86.8%), and were less likely to see patients and prescribe medicine (62.0%), to provide phone follow-ups (45.6%), to provide home visits (42.2%) or to offer bereavement care for the family (35.1%). The results of stepwise logistic regression analysis for the willingness to provide home visits showed that 'less perception of barriers', 'family medicine specialist' and 'older than 50 years' significantly predicted higher willingness, while 'female' predicted lower willingness. There was no significant association between the willingness and the knowledge score. Community physicians' beliefs and experience in palliative care rather than their knowledge influence their willingness to provide palliative care for patients with terminal cancer. Only through active participation in the real-world clinical setting and active health policy administration can community physicians overcome obstacles to providing palliative care.
Bowman, Brynn; Meier, Diane E
That palliative care improves quality of life for seriously ill patients and their families is well known - but how can healthcare providers ensure that the palliative needs of all patients are being assessed and addressed? A growing number of curricula in core palliative care practices have been developed to ensure that clinicians from all specialties and disciplines have the necessary training to manage pain and symptoms and discuss care goals with patients and families. Through broad-based training in core palliative care skills, combined with referral to specialty palliative care for high-need patients, providers can improve quality of life for their patients with respiratory disease.
Yokoya, Shoji; Kizawa, Yoshiyuki; Maeno, Takami
The provision of end-of-life (EOL) care by geriatric health service facilities (GHSFs) in Japan is increasing. Advance care planning (ACP) is one of the most important issues to provide quality EOL care. This study aimed to clarify the practice and perceived importance of ACP and the difficulties in providing palliative care in GHSFs. A self-report questionnaire was mailed to head nurses at 3437 GHSFs nationwide. We asked participants about their practices regarding ACP, their recognition of its importance, and their difficulties in providing palliative care. We also analyzed the relationship between these factors and EOL care education. Among 844 respondents (24.5% response rate), approximately 69% to 81% of head nurses confirmed that GHSF residents and their families understood disease conditions and goals of care. There was a large discrepancy between the actual practice of ACP components and the recognition of their importance (eg, asking residents about existing advance directive [AD; 27.5% practiced it, while 79.6% considered it important]; recommending completion of an AD [18.1% vs 68.4%], and asking for designation of a health-care proxy [30.4% vs 76.8%]). The EOL care education was provided at 517 facilities (61.3%). Head nurses working at EOL care education-providing GHSFs practiced ACP significantly more frequently and had significantly fewer difficulties in providing palliative care. A large discrepancy was found between GHSF nurses' practice of ACP and their recognition of its importance. Providing EOL care education in GHSFs may increase ACP practices and enhance respect for resident's preferences concerning EOL care.
Khan, Robyna Irshad
Pakistan is a developing country of South East Asia, with all the incumbent difficulties currently being faced by the region. Insufficient public healthcare facilities, poorly regulated private health sector, low budgetary allocation for health, improper priority setting while allocating limited resources, have resulted essentially in an absence of palliative care from the healthcare scene. Almost 90% of healthcare expenditure is out of the patient's pocket with more than 45% of population living below the poverty line. All these factors have a collective potential to translate into an end-of-life care disaster as a large percentage of population is suffering from chronic debilitating/terminal diseases. So far, such a disaster has not materialised, the reason being a family based culture emphasising the care of the sick and old at home, supported by religious teachings. This culture is not limited to Pakistan but subsists in the entire sub-continent, where looking after the sick/elderly at home is considered to be the duty of the younger generation. With effects of globalisation, more and more older people are living alone and an increasing need for palliative care is being realised. However, there does not seem to be any plan on the part of the public or private sectors to initiate palliative care services. This paper seeks to trace the social and cultural perspectives in Pakistan with regards to accessing palliative care in the context of healthcare facilities available.
... chaplains, and counselors. Support may involve art and music therapists, home health aides, nutritionists, and respite care providers. How does palliative care help children and their families? A child’s serious illness affects the entire family. Pediatric palliative care can support ...
Çeliker, Mahmut Yaşar; Pagnarith, Yos; Akao, Kazumi; Sophearin, Dim; Sorn, Sokchea
Cancer care with curative intent remains difficult to manage in many resource-limited settings such as Cambodia. Cambodia has a small workforce with limited financial and health-care resources resulting in delayed diagnoses and availability of limited therapeutic tools. Thus, palliative care becomes the primary form of care in most cases. Although palliative care is becoming an integral part of medical care in developed countries, this concept remains poorly understood and utilized in developing countries. Angkor Hospital for Children serves a relatively large pediatric population in northern Cambodia. According to the modern definition of palliative care, approximately two-thirds of the patients admitted to the hospital were deemed candidates to receive palliative care. In an effort to develop a pediatric palliative care team utilizing existing resources and intensive training, our focus group recruited already existing teams with different health-care expertise and other motivated members of the hospital. During this process, we have also formed a palliative care training team of local experts to maintain ongoing palliative care education. Feedback from patients and health-care providers confirmed the effectiveness of these efforts. In conclusion, palliative and sustainable care was offered effectively in a resource-limited setting with adequately trained and motivated local providers. In this article, the steps and systems used to overcome challenges in Cambodia are summarized in the hope that our experience urges governmental and non-governmental agencies to support similar initiatives.
Mahmut Yaşar Çeliker
Full Text Available Cancer care with curative intent remains difficult to manage in many resource-limited settings such as Cambodia. Cambodia has a small workforce with limited financial and health-care resources resulting in delayed diagnoses and availability of limited therapeutic tools. Thus, palliative care becomes the primary form of care in most cases. Although palliative care is becoming an integral part of medical care in developed countries, this concept remains poorly understood and utilized in developing countries. Angkor Hospital for Children serves a relatively large pediatric population in northern Cambodia. According to the modern definition of palliative care, approximately two-thirds of the patients admitted to the hospital were deemed candidates to receive palliative care. In an effort to develop a pediatric palliative care team utilizing existing resources and intensive training, our focus group recruited already existing teams with different health-care expertise and other motivated members of the hospital. During this process, we have also formed a palliative care training team of local experts to maintain ongoing palliative care education. Feedback from patients and health-care providers confirmed the effectiveness of these efforts. In conclusion, palliative and sustainable care was offered effectively in a resource-limited setting with adequately trained and motivated local providers. In this article, the steps and systems used to overcome challenges in Cambodia are summarized in the hope that our experience urges governmental and non-governmental agencies to support similar initiatives.
Full Text Available Critical junctures in patients′ lives such as chronic illnesses and advanced diseases may leave the persons in a state of imbalance or disharmony of body, mind and spirit. With regard to spirituality and healing, there is a consensus in literature about the influence of spirituality on recovery and the ability to cope with and adjust to the varying and demanding states of health and illness. Empirical evidence suggests that spiritual support may act as an adjunct to the palliative care of those facing advanced diseases and end of life. In this article, the author draws from his empirical work on spirituality and culture to develop a discourse on palliative care and spirituality in both secular and non-secular settings. In doing so, this paper offers some understanding into the concept of spirituality, spiritual needs and spiritual care interventions in palliative care in terms of empirical evidence. Responding to spiritual needs could be challenging, but at the same time it could be rewarding to both healthcare practitioner (HCP and patient in that they may experience spiritual growth and development. Patients may derive great health benefits with improvements in their quality of life, resolutions and meaning and purpose in life. It is hoped that the strategies for spiritual support outlined in this paper serve as practical guidelines to HCPs for development of palliative care in South Asia.
Lopez-Tourres, F; Lefebvre-Chapiro, S; Fétéanu, D; Trivalle, C
Although end-of-life care is a relatively common option for patients with terminal cancer, it has become available only recently for patients with Alzheimer's disease. Alzheimer's disease is a chronic process of gradual deterioration of cognitive ability and the resulting deficits in activities of daily living. The chronic disease course of Alzheimer's disease gives to the clinician the opportunity to look ahead and plan for the final stages of care. This article presents a review of palliative care interventions for patients with Alzheimer's disease and other dementias. End-of-life care for individuals with end-stage Alzheimer's disease is increasingly important because of the increasing number of patients with this disease. However, there are barriers to providing high-quality end-of-life care. Currently, palliative care is not optimal for Alzheimer's patients. Health care systems and clinicians should make efforts to improve the suffering of patients with this disease and their caregivers.
Brereton, Louise; Clark, Joseph; Ingleton, Christine; Gardiner, Clare; Preston, Louise; Ryan, Tony; Goyder, Elizabeth
A wide range of organisational models of palliative care exist. However, decision makers need more information about which models are likely to be most effective in different settings and for different patient groups. To identify the existing range of models of palliative care that have been evaluated, what is already known and what further information is essential if the most effective and cost-effective models are to be identified and replicated more widely. A review of systematic and narrative reviews according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Study quality was assessed using the AMSTAR (A MeaSurement Tool to Assess Reviews) tool. MEDLINE, EMBASE, PsycINFO, CINAHL, Cochrane Library, Web of Science and ASSIA were searched for reviews about models of service provision from 2000 to 2014 and supplemented with Google searches of the grey literature. Much of the evidence relates to home-based palliative care, although some models are delivered across care settings. Reviews report several potential advantages and few disadvantages of models of palliative care delivery. However, under-reporting of the components of intervention and comparator models are major barriers to the evaluation and implementation of models of palliative care. Irrespective of setting or patient characteristics, models of palliative care appear to show benefits and some models of palliative care may reduce total healthcare costs. However, much more detailed and systematic reporting of components and agreement about outcome measures is essential in order to understand the key components and successfully replicate effective organisational models.
Groenvold, Mogens; Adsersen, Mathilde; Hansen, Maiken Bang
Aims The aim of the Danish Palliative Care Database (DPD) is to monitor, evaluate, and improve the clinical quality of specialized palliative care (SPC) (ie, the activity of hospital-based palliative care teams/departments and hospices) in Denmark. Study population The study population is all patients in Denmark referred to and/or in contact with SPC after January 1, 2010. Main variables The main variables in DPD are data about referral for patients admitted and not admitted to SPC, type of the first SPC contact, clinical and sociodemographic factors, multidisciplinary conference, and the patient-reported European Organisation for Research and Treatment of Cancer Quality of Life Questionaire-Core-15-Palliative Care questionnaire, assessing health-related quality of life. The data support the estimation of currently five quality of care indicators, ie, the proportions of 1) referred and eligible patients who were actually admitted to SPC, 2) patients who waited <10 days before admission to SPC, 3) patients who died from cancer and who obtained contact with SPC, 4) patients who were screened with European Organisation for Research and Treatment of Cancer Quality of Life Questionaire-Core-15-Palliative Care at admission to SPC, and 5) patients who were discussed at a multidisciplinary conference. Descriptive data In 2014, all 43 SPC units in Denmark reported their data to DPD, and all 9,434 cancer patients (100%) referred to SPC were registered in DPD. In total, 41,104 unique cancer patients were registered in DPD during the 5 years 2010–2014. Of those registered, 96% had cancer. Conclusion DPD is a national clinical quality database for SPC having clinically relevant variables and high data and patient completeness. PMID:27822111
Full Text Available Abstract The WHO defines pediatric palliative care as the active total care of the child's body, mind and spirit, which also involves giving support to the family. Its purpose is to improve the quality of life of young patients and their families, and in the vast majority of cases the home is the best place to provide such care, but for cultural, affective, educational and organizational reasons, pediatric patients rarely benefit from such an approach. In daily practice, it is clear that pediatric patients experience all the clinical, psychological, ethical and spiritual problems that severe, irreversible disease and death entail. The international literature indicates a prevalence of incurable disease annually affecting 10/10,000 young people from 0 to 19 years old, with an annual mortality rate of 1/10,000 young people from birth to 17 years old. The needs of this category of patients, recorded in investigations conducted in various parts of the world, reveal much the same picture despite geographical, cultural, organizational and social differences, particularly as concerns their wish to be treated at home and the demand for better communications between the professionals involved in their care and a greater availability of support services. Different patient care models have been tested in Italy and abroad, two of institutional type (with children staying in hospitals for treating acute disease or in pediatric hospices and two based at home (the so-called home-based hospitalization and integrated home-based care programs. Professional expertise, training, research and organization provide the essential foundations for coping with a situation that is all too often underestimated and neglected.
Benini, Franca; Spizzichino, Marco; Trapanotto, Manuela; Ferrante, Anna
The WHO defines pediatric palliative care as the active total care of the child's body, mind and spirit, which also involves giving support to the family. Its purpose is to improve the quality of life of young patients and their families, and in the vast majority of cases the home is the best place to provide such care, but for cultural, affective, educational and organizational reasons, pediatric patients rarely benefit from such an approach. In daily practice, it is clear that pediatric patients experience all the clinical, psychological, ethical and spiritual problems that severe, irreversible disease and death entail. The international literature indicates a prevalence of incurable disease annually affecting 10/10,000 young people from 0 to 19 years old, with an annual mortality rate of 1/10,000 young people from birth to 17 years old. The needs of this category of patients, recorded in investigations conducted in various parts of the world, reveal much the same picture despite geographical, cultural, organizational and social differences, particularly as concerns their wish to be treated at home and the demand for better communications between the professionals involved in their care and a greater availability of support services. Different patient care models have been tested in Italy and abroad, two of institutional type (with children staying in hospitals for treating acute disease or in pediatric hospices) and two based at home (the so-called home-based hospitalization and integrated home-based care programs). Professional expertise, training, research and organization provide the essential foundations for coping with a situation that is all too often underestimated and neglected.
... Does my child have to be in hospice care to receive palliative care? No, your child can receive palliative care in ... at any time during their illness. How can palliative care help my child and our family? Palliative care ...
Madsen, Kirsten Halskov; Henriksen, Jette; Meldgaard, Anette
Chapter 11 by Kirsten Halskov Madsen, Anette Meldgaard and Jette Henriksen deals with the development of palliative care programmes aimed at the basic level of palliative care practice. The need to develop educational opportunities at particularly this level – described as ‘the basic inter......-professional level of palliative care’ – has been increasing for many years where palliative care has conventionally and primarily been associated with specialist training. As the authors show – based on a mapping out of existing educational initiatives in a region of Denmark, a reading of the curriculum...... and a description of the organization of palliative care – there is a need for such inter-professional palliative care that raises the level of competences at the basic level and the sharing of knowledge as well as securing the continuous qualifying of healthcare staff working with palliative care....
Ahmedzai, S H; Costa, A; Blengini, C; Bosch, A; Sanz-Ortiz, J; Ventafridda, V; Verhagen, S C
In spite of recent advances in anti-cancer treatments, most adult cancer patients still ultimately die from their disease. There should therefore be free access to palliative care around the clock and seven days a week, for all cancer patients, as a fundamental human right. At present, the implementation of palliative care and patients' access to it are inconsistent across Europe and many other parts of the world. The World Health Organisation (WHO) made an important advance in 1986 by first defining palliative care and, then updating this definition in 2002. However, this definition could benefit from further refinement in order to reflect the increasing multi-professional specialisation in this subject, and to recognise the different models for delivering this type of care. We recommend that palliative care should be defined as follows: Palliative care is the person-centred attention to symptoms, psychological, social and existential distress in patients with limited prognosis, in order to optimise the quality of life of patients and their families or close friends. Based on this definition, we propose two further types of palliative care which reflect the reality of how palliative care is actually delivered: Basic palliative care is the standard of palliative care which should be provided by all healthcare professionals, in primary or secondary care, within their normal duties to patients with life-limiting disease. Specialised palliative care is a higher standard of palliative care provided at the expert level, by a trained multi-professional team, who must continually update their skills and knowledge, in order to manage persisting and more complex problems and to provide specialised educational and practical resources to other non-specialised members of the primary or secondary care teams. If a patient has difficult symptoms which cannot be controlled by his/her current healthcare team, he/she has a right to be referred, and the current healthcare provider
Cheng, Shao-Yi; Dy, Sydney; Fang, Pai-Han; Chen, Ching-Yu; Chiu, Tai-Yuan
The effectiveness of inpatient palliative care units, a complex intervention, is challenging to evaluate due to methodological and practical difficulties. We conducted a study to evaluate providers' perceived effectiveness of one such unit. A non-concurrent, prospective, controlled study using the Audit Scale for good death services as an indicator of process of care and the Good Death Scale as the outcome of provider assessment of quality of dying was conducted. Eighty of 212 terminally ill cancer patients were matched from a tertiary medical center in Taiwan. Patients in the unit served as the intervention group and patients in the oncology ward served as controls. Multiple logistic regression was applied to estimate the propensity of choosing the unit for each patient, and linear regression analysis was conducted to identify predictive factors for mean change scores of the Good Death Scale. Male gender (P < 0.001, 95% confidence interval = 0.73-2.43) was associated with better quality of dying while having hepatocellular carcinoma (P < 0.004, 95% confidence interval = -2.22 to -0.44) was associated with worse quality. For those in the unit, higher total Audit Scale scores were positively related to the outcome of quality of dying. The unit (P < 0.001, 95% confidence interval = 8.67-12.97) and higher Good Death Scale at admission (P < 0.001, 95% confidence interval = 0.44-1.13) were predictors of Audit Scale scores. Admission to a palliative care unit was associated with higher provider assessments of quality of dying for terminally ill cancer patients. These units should be considered as options for hospitals looking for ways to improve the quality of dying for patients.
Stewart, Jonathan T; Schultz, Susan K
With the growing care needs for the older population at the end of their lives, there has been a substantial increase in attention to the management of the patient with dementia in hospice and palliative care services. This article reviews issues in access to care and the optimal management of the patient with dementia, particularly in the context of neuropsychiatric complexities. Special issues such as delirium, cachexia, behavioral symptoms, and pain management are addressed. Future challenges in research such as the development of better prognostic models are noted as well as the importance of attention to access to care. Published by Elsevier Inc.
Bagcivan, Gulcan; Dionne-Odom, J Nicholas; Frost, Jennifer; Plunkett, Margaret; Stephens, Lisa A; Bishop, Peggy; Taylor, Richard A; Li, Zhongze; Tucker, Rodney; Bakitas, Marie
Early outpatient palliative care consultations are recommended by clinical oncology guidelines globally. Despite these recommendations, it is unclear which components should be included in these encounters. Describe the evaluation and treatment recommendations made in early outpatient palliative care consultations. Outpatient palliative care consultation chart notes were qualitatively coded and frequencies tabulated. Outpatient palliative care consultations were automatically triggered as part of an early versus delayed randomized controlled trial (November 2010 to April 2013) for patients newly diagnosed with advanced cancer living in the rural Northeastern US. In all, 142 patients (early = 70; delayed = 72) had outpatient palliative care consultations. The top areas addressed in these consultations were general evaluations-marital/partner status (81.7%), spirituality/emotional well-being (80.3%), and caregiver/family support (79.6%); symptoms-mood (81.7%), pain (73.9%), and cognitive/mental status (68.3%); general treatment recommendations-counseling (39.4%), maintaining current medications (34.5%), and initiating new medication (23.9%); and symptom-specific treatment recommendations-pain (22.5%), constipation (12.7%), depression (12.0%), advanced directive completion (43.0%), identifying a surrogate (21.8%), and discussing illness trajectory (21.1%). Compared to the early group, providers were more likely to evaluate general pain ( p = 0.035) and hospice awareness ( p = 0.005) and discuss/recommend hospice ( p = 0.002) in delayed group participants. Outpatient palliative care consultations for newly diagnosed advanced cancer patients can address patients' needs and provide recommendations on issues that might not otherwise be addressed early in the disease course. Future prospective studies should ascertain the value of early outpatient palliative care consultations that are automatically triggered based on diagnosis or documented symptom
Romesberg, Tricia L
The concept of palliative care, well recognized in the adult population, has not been fully implemented in the pediatric population. Yet there is an urgent need to define and provide excellence in end-of-life care for infants and their families. Beneficent end-of-life care for the dying neonate includes efforts directed at comfort care, assistance with end-of-life decision making, and bereavement support. Through research and education, the challenges to implementing neonatal palliative care programs can be overcome. This article describes the components of neonatal palliative care, identifies the challenges associated wiith the implementation of such programs, and proposes strategies for addressing these challenges.
Thienprayoon, Rachel; Mark, Melissa San Julian; Grossoehme, Daniel
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.
A specific set of assessment scales can underpin the management of distressing symptoms of patients requiring palliative care. A research assistant supported nurses working in a rural hospital setting during the introduction of these scales. A secondary analysis was conducted to further explore the qualitative data of a previously reported mixed-method study. In particular, the experiences of nurses working alongside a research assistant in the facilitation of using a new assessment form. Purposeful sampling was employed: participating nurses were invited to attend one of three focus group meetings. Data analysis revealed three main themes: a contact person, coach/mentor and extra help initiatives. Three to four subthemes corresponded with each main theme. Findings suggest nurses benefit from having someone to assist in learning about new documentation. Nurses respond positively to mentorship and practical guidance when integrating a new assessment form into routine evidence-based practice.
Full Text Available Diminishing treatment alternatives, losing hope for a possible recovery, insufficient control of pain and inability to provide the necessary technical support lead palliative care to bring multiple problems with itself. Along with technical and professional challenges, palliative care can put a humanitarian strain on the nurse. Caring for a dying patient is a worrisome experience which causes spiritual pain. An increase in nurses’ death anxiety may cause unwillingness to be together with a dying patient. In terms of the end of life, it is expected that the nurse stands by patient’s family to help them in sustaining their psychosocial wellness. In order to meet this expectation, nurses should get a qualitative training for end of life care along with good interpersonal communication skills and coping strategies.
Csikos, Agnes; Busa, Csilla; Muszbek, Katalin
During the past 25 years, many developmental steps have occurred in Hungary in palliative care. Further education and service development is needed to provide a quality palliative care for all the Hungarian people. Hungary has a universal health care system with a developed infrastructure. The first Hungarian hospice team started in 1991. At that time, the concept of hospice care was unknown. Symptom control and psychosocial support for the dying patient was inadequate. The regulatory framework was based on the 1997 Health Care Act which was followed by significant palliative care legislation including documents on the legal requirements for palliative care (2004). National guidelines were developed in 2002. Home and inpatient hospice care are reimbursed by the National Insurance Fund. Patients and families pay nothing. The multidisciplinary team provides care for patients and families and hospice home care is widely available across the country. Inpatient units are still lacking in Hungary. Strong opioids are readily available in the country and can be prescribed for cancer and noncancer patients. Palliative care is taught in medical and nursing undergraduate and postgraduate education. From 2014, physicians in Hungary can take a one-year course to qualify for a license in palliative medicine. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Meier, Diane E; Back, Anthony L; Berman, Amy; Block, Susan D; Corrigan, Janet M; Morrison, R Sean
In 2014 the World Health Organization called for palliative care to be integrated as an essential element of the health care continuum. Yet in 2017 US palliative care services are found largely in hospitals, and hospice care, which is delivered primarily in the home, is limited to people who are dying soon. The majority of Americans with a serious illness are not dying; are living at home, in assisted living facilities, or in nursing homes; and have limited access to palliative care. Most health care providers lack knowledge about and skills in pain and symptom management, communication, and care coordination, and both the public and health professionals are only vaguely aware of the benefits of palliative care and how and when to access it. The lack of policy supports for palliative care contributes to preventable suffering and low-value care. In this article we outline the need for a national palliative care strategy to ensure reliable access to high-quality palliative care for Americans with serious medical illnesses. We review approaches employed by other countries, list the participants needed to develop and implement an actionable strategy, and identify analogous US national health initiatives to inform a process for implementing the strategy. Project HOPE—The People-to-People Health Foundation, Inc.
Hajjar, Ramzi R; Charalambous, Haris A; Baider, Lea; Silbermann, Michael
Care for elderly people with life-limiting illness cannot be delivered primarily by geriatricians or palliative care practitioners. The role of these clinicians is to help carers become adept in palliative care medicine. In a culture in which family ties run deep, the offer of palliative care from an outsider may be met with suspicion. The family bond in the Middle East is strong, but the emotional response to terminal illness may push families to request futile treatments, and physicians to comply. When palliative care is well developed and well understood, it provides a viable alternative to such extreme terminal measures. Copyright © 2015 Elsevier Inc. All rights reserved.
Full Text Available The aim of this research study was to gain an understanding of nurses’ experiences of providing care to patients from minority ethnic groups within the specialist palliative care inpatient unit of an Irish hospice. Five nurses working in a hospice inpatient unit with experience in providing care to patients from minority ethnic groups were interviewed using a hermeneutic phenomenological approach. Analysis of the data resulted in the emergence of two distinct constructs, “encountering a landscape of diversity” and “negotiating this landscape”, each one comprising three themes. Findings relating to religion and supporting patients’ religious needs were dominant in four of the six emergent themes—death and dying, acceptance, feeling their way, and being resourceful. The findings presented in this paper highlight the personal and professional challenges facing nurses when providing care in the context of religious diversity. In addition, participants’ descriptions of their endeavours to negotiate the challenges in the context of these differences are identified. By applying these findings in practice, healthcare professionals hold the potential to positively impact the quality-of-life of patients, their families, and their experiences of hospice care in Ireland.
Adler, K; Schlieper, D; Kindgen-Milles, D; Meier, S; Schwartz, J; van Caster, P; Schaefer, M S; Neukirchen, M
inconsistent and infrequent as is its acceptance among ICU physicians. Trigger factors can be used to improve the integration of palliative care support in ICUs and point out patients' unmet palliative needs. Trigger factors can reduce barriers which hold back the integration of palliative care in ICUs. Early integration of palliative care can improve quality of care by offering psychological support to patients and their families and by providing collegial consultation. An ongoing prospective study is investigating the acceptance of trigger factors in the daily routine among ICU physicians in Germany.
Moon, Paul J
Grief and palliative care are interrelated and perhaps mutually inclusive. Conceptually and practically, grief intimately relates to palliative care, as both domains regard the phenomena of loss, suffering, and a desire for abatement of pain burden. Moreover, the notions of palliative care and grief may be construed as being mutually inclusive in terms of one cueing the other. As such, the discussions in this article will center on the conceptualizations of the mutuality between grief and pal...
Dellon, E P; Goggin, J; Chen, E; Sabadosa, K; Hempstead, S E; Faro, A; Homa, K
The goal of palliative care is to improve quality of life for people with serious illness. We aimed to create a cystic fibrosis (CF)-specific definition of palliative care. A working group of 36 CF care providers, researchers, palliative care providers, quality improvement experts, individuals with CF, and CF caregivers completed a series of questionnaires to rate the value of each of 22 attributes of palliative care, rank top attributes to construct definitions of palliative care, and then rate proposed definitions. An average of 28 participants completed each of four questionnaires, with consistent distribution of stakeholder roles across questionnaires. Many identified overlaps in routine CF care and palliative care and highlighted the importance of a definition that feels relevant across the lifespan. Modified Delphi methodology was used to define palliative care in CF. The definition will be used as the foundation for development of CF-specific palliative care guidelines. Copyright © 2017. Published by Elsevier B.V.
Dementia is a life-limiting disease without curative treatments but the data suggest that advanced dementia is not viewed as a terminal diagnosis by physicians. Although symptoms of dementia and cancer patients are similar, palliative care is less frequently proposed for dementia patients. However, professionals and family members of demented patients strongly favor comfort care for end-stage dementia. To improve the patients' relief near the end of life, advance care planning with patients and their proxies should be encouraged. It should start as soon as possible so that the patient can still be actively involved and his preferences, values, needs and beliefs elicited. Written advance directives or enrollment in hospice care are associated with quality of dying. Yet caregivers are sometimes concerned about applying palliative care too early or that advance plans would be invalidated if relatives or patients changed their mind. Therefore, general practitioners and palliative care specialists need to better collaborate to provide greater information and improve comfort and quality of life of dementia patients.
Mun, Eluned; Nakatsuka, Craig; Umbarger, Lillian; Ruta, Ruth; McCarty, Tracy; Machado, Cynthia; Ceria-Ulep, Clementina
Objective: For improved utilization of the existing palliative care team in the intensive care unit (ICU), a process was needed to identify patients who might need a palliative care consultation in a timelier manner. Methods: A systematic method to create a new program that would be compatible with our specific ICU environment and patient population was developed. A literature review revealed a fairly extensive array of reports and numerous clinical practice guidelines, which were assessed for information and strategies that would be appropriate for our unit. Results: The recommendations provided by the Center to Advance Palliative Care from its Improving Palliative Care in the ICU project were used to successfully implement a new palliative care initiative in our ICU. Conclusion: The guidelines provided by the Improving Palliative Care in the ICU project were an important tool to direct the development of a new palliative care ICU initiative. PMID:28241905
... For Policymakers For Family Caregivers Glossary Menu Is Palliative Care Right for You? Answer the following questions to ... medical advice, diagnosis or treatment. What Is Palliative Care Definition Pediatric Palliative Care Disease Types FAQ Handout for Patients and ...
Gillick, Muriel R
Palliative care defines itself as complementary to life-prolonging therapy. Consideration should be given instead to viewing palliative care as the gold standard for all patients with progressive, life-threatening illness. The dichotomy between cure on the one hand and palliation on the other reflects the oncologic roots of palliative medicine, as well as the widespread societal view of medical treatment as overwhelmingly focused on cure. Because the treatment of patients with serious and complex illness is seldom curative, it makes more sense to think of the care of such patients as inherently palliative. Patients must choose among various forms of potentially life-prolonging therapies, each with its own side-effect profile and likelihood of success, depending on how they prioritize their goals of care. From this perspective, palliative care, an interdisciplinary approach that attends to advance care planning, psychosocial issues, and management of symptoms, should be the standard of care for these patients. Palliative care physicians can either provide primary care to patients with serious illness or can serve as consultants in the care of particularly challenging cases.
Langberg, Karl M; Kapo, Jennifer M; Taddei, Tamar H
Decompensated cirrhosis is an illness that causes tremendous suffering. The incidence of cirrhosis is increasing and rates of liver transplant, the only cure, remain stagnant. Palliative care is focused on improving quality of life for patients with serious illness by addressing advanced care planning, alleviating physical symptoms and providing emotional support to the patient and family. Palliative care is used infrequently in patients with decompensated cirrhosis. The allure of transplant as a potential treatment option for cirrhosis, misperceptions about the role of palliative care and difficulty predicting prognosis in liver disease are potential contributors to the underutilization of palliative care in this patient population. Studies have demonstrated some benefit of palliative care in patients with decompensated cirrhosis but the literature is limited to small observational studies. There is evidence that palliative care consultation in other patient populations lowers hospital costs and ICU utilization and improves symptom control and patient satisfaction. Prospective randomized control trials are needed to investigate the effects of palliative care on traditional and patient reported outcomes as well as cost of care in decompensated cirrhosis for transplant eligible and ineligible patient populations. This article is protected by copyright. All rights reserved. This article is protected by copyright. All rights reserved.
Cojean, N; Strub, C; Kuhn, P; Calvel, L
The "patients' rights and end-of-life care" act, known as the Leonetti law, has allowed implementation of palliative care in neonatology as an alternative to unreasonable therapeutic interventions. A palliative care project can be offered to newborns suffering from intractable diseases. It must be focused on the newborn's quality of life and comfort and on family support. Palliative care for newborns can be provided in the delivery room, in the neonatal unit, and also at home. Going home is possible but requires medical support. Here we describe the potential benefits of the intervention of a regional team of pediatric palliative care for newborns, both in the hospital and at home. Two clinical situations of palliative care at home started in the neonatal period and the neonatal unit are presented. They are completed by a retrospective national survey focusing on the type of support to newborns in palliative care in 2014, which was conducted in 22 French regional pediatric palliative care teams. It shows that 26 newborns benefited from this support at home in 2014. Sixteen infants were born after a pregnancy with a palliative care birth plan and ten entered palliative care after a decision to limit life-sustaining treatments. Twelve of them returned home before the 20th day of life. Sixteen infants died, six of them at home. The regional pediatric palliative care team first receives in-hospital interventions: providing support for ethical reflection in the development of the infant's life project, meeting with the child and its family, helping organize the care pathway to return home. When the child is at home, the regional pediatric palliative care team can support the caregiver involved, provide home visits to continue the clinical monitoring of the infant, and accompany the family. The follow-up of the bereavement and the analysis of the practices with caregivers are also part of its tasks. Copyright © 2016 Elsevier Masson SAS. All rights reserved.
Nutrition in palliative care and at the end of life should be one of the goals for improving quality of life. It is important to address issues of food and feeding at this time to assist in the management of troublesome symptoms as well as to enhance the remaining life. While this paper focuses upon the nutritional aspects of cancer in palliative care, the sentiments are applicable to other serious chronic illnesses such as advanced cardiac failure, chronic obstructive pulmonary disease and dementia. Cancer and its treatments exert a major impact upon physical and psychological reserves and at the end of life problems with appetite and the ability to eat and drink compound such impact. The aims of nutritional care minimize food-related discomfort and maximize food enjoyment. Identification of any nutritional problems can facilitate the employment of strategies which need to be discussed with the patient and their families and reviewed regularly as conditions change. Ethical questions will be raised concerning the provision of food and fluids to a person nearing the end of their life. Nurses need to acknowledge that food has greater significance than the provision of nutrients.
MAIN TOPIC. C M E May 2003 Vol.21 No.5 249. Ever since the original concept of total pain, with its physical, emotional, social and spiritual components, the demands of palliative care have been met by expand- ing expertise. Palliative care is a team effort and its impact is unique in that it results from a combination of skills.
Madden, Kevin; Wolfe, Joanne; Collura, Christopher
The chronicity of illness that afflicts children in Pediatric Palliative Care and the medical technology that has improved their lifespan and quality of life make prognostication extremely difficult. The uncertainty of prognostication and the available medical technologies make both the neonatal intensive care unit and the pediatric intensive care unit locations where many children will receive Pediatric Palliative Care. Health care providers in the neonatal intensive care unit and pediatric intensive care unit should integrate fundamental Pediatric Palliative Care principles into their everyday practice. Copyright © 2015 Elsevier Inc. All rights reserved.
The purpose for this observational research was to understand how Can Support provides palliative care at home and analyze its strengths and weaknesses in various socioeconomic scenarios for future development...
White, Patrick; Arnold, Robert; Bull, Janet; Cicero, Brandon
Bone metastases are a common complication in patients with advanced cancer but little is known regarding current practice patterns of palliative care providers when prescribing corticosteroids as adjuvant therapy for painful bone metastases. To identify current practice patterns among palliative care providers when prescribing corticosteroids for the treatment of painful bone metastases. A cross-sectional, online survey of the membership of the American Academy of Hospice and Palliative Medicine. Providers were asked to report how frequently they prescribed corticosteroids as adjuvant therapy in patients with painful bone metastases, and to specify the corticosteroid, dosage, treatment duration, and the gastroprotective strategy most frequently utilized. Seven hundred sixty-five participants responded to the survey and 600 (78%) of respondents completed the survey. Ninety-eight percent of respondents completing the survey reported having prescribed corticosteroids as adjuvant pain therapy, and 66% ordered corticosteroids for the majority of their patients with painful bone metastases. Dexamethasone was the most widely prescribed corticosteroid. Eight milligrams divided twice daily was the most common dosage selected and once started, it was usually continued indefinitely. Corticosteroids are commonly prescribed as adjuvant therapy in the treatment of painful bone metastases in patients with limited life expectancy. Dexamethasone is the most commonly selected corticosteroid by American palliative care providers with variation existing among providers regarding dosing schedule, treatment duration, and gastroprotective strategies. Clinical trials comparing a total daily dose of four versus eight milligrams of dexamethasone would be clinically useful to inform evidence-based practice.
Brenda M Sabo
Full Text Available The work environment significantly affects the physical, psychological, emotional and/or spiritual wellbeing of individuals is unquestionable. Adverse effects have been noted among healthcare professionals working with clients experiencing pain and suffering often associated with cancer, palliative or end-of-life care; however, little is known about how or in which manner the nurse-patient-family relationship may affect the psychosocial health and wellbeing of nurses working in these areas. Three concepts have been highlighted as most frequently associated with the adverse consequences of caring work: these are compassion fatigue (secondary traumatic stress, burnout and vicarious traumatization. The following discussion investigates these concepts and their implications on palliative and hematological cancer nursing practice.
Al Qadire, Mohammad
The main purpose of palliative care is to manage symptoms among patients, reduce their burden of pain, and improve their quality of life. Nurses are an essential part of the palliative care team in providing high standards of care since they spend the longest time with patients. However, lack of adequate knowledge of palliative care is considered as one of the main barriers to palliative care development and practise. To evaluate Jordanian nursing students' knowledge about palliative care. Design A quantitative research method and descriptive online-survey design were used. Settings and Participants The sample consisted of 220 students enrolled in five nursing schools (four governmental and one private) in Jordan. The Palliative Care Quiz for Nursing was used to measure students' knowledge. The sample consisted of 220 nursing students; the mean age was 20.5, SD 2.5, and most of the students were female (67), 74 (34%) were fourth-year students and 58 (26%) were in their third year. The total mean score was low, at 8.0 (SD 3.1), ranging from 0 to 18 and the number of correctly answered statements ranged from 60 (27%, statement no. 3) to 145 (66%, statement no. 2). It was found that there were no significant impacts (H (3)=5.69, p=0.137) for place of study. However, students' knowledge was strongly affected by their academic level (H (3)=12.60, p=0.005). Integrating palliative care education is required as the mainstay to improve students' knowledge and therefore practise. This education needs to be comprehensive in covering the basic principles of palliative care and symptom management and it should be distributed throughout the different courses to discuss palliative care within different contexts, such as elderly, paediatric and adult settings. © 2013.
Ankuda, Claire K; Jetty, Anuradha; Bazemore, Andrew; Petterson, Stephen
Provision of palliative care services by primary care physicians is increasingly important with an aging population, but it is unknown whether US primary care physicians see themselves as palliative practitioners. This study used cross-sectional analysis of data from the 2013 American Board of Family Medicine Maintenance of Certification Demographic Survey. Of 10,894 family physicians, 33.1% (n = 3609) report providing palliative care. Those providing palliative care are significantly more likely to provide non-clinic-based services such as care in nursing homes, home visits, and hospice. Controlling for other characteristics, physicians reporting palliative care provision are significantly (P palliative care, with physician and practice characteristics driving reporting palliative care provision. © Copyright 2017 by the American Board of Family Medicine.
Rassouli, Maryam; Sajjadi, Moosa
Cancer is the third leading cause of death in Iran and its incidence has been increasing in recent years. Patients' quality of life is altered rather enormously due to cancer, which doubles the importance of and the need for providing palliative care in Iran. Although many steps have been taken toward the development and providing of palliative care in Iran, there is still a large gap between the status quo and the desirable state. This study presents the current state of palliative care for cancer patients and discusses the barriers, challenges and outlook of palliative care in Iran. If infrastructural projects that have recently been launched prove successful, proper advancement toward the providing of palliative care services in Iran will then not far on the horizon. © The Author(s) 2014.
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
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.
De Lima, Liliana; Radbruch, Lukas
The International Association for Hospice and Palliative Care (IAHPC) is a membership-based organization dedicated to the development and improvement of hospice and palliative care worldwide. The mission of IAHPC is to improve the quality of life of adults and children with life-threatening conditions and their families. The vision of IAHPC is universal access to high-quality palliative care, integrated into all levels of health care systems in a continuum of care with disease prevention, early diagnosis, and treatment, to assure that any patient's or family caregiver's suffering is relieved to the greatest extent possible. IAHPC focuses on the advancement of four areas of palliative care: education, access to medicines, health policies, and service implementation. IAHPC works on three levels: at the grass roots, developing resources, and educational strategies that enable health workers to provide cost-effective palliative care; at the national level, working with government representatives to improve national policies to ensure adequate care and access to medicines; and at the international level, advocating with the UN organizations to ensure that access to palliative care and to essential medicines for palliative care and pain treatment is stipulated and incorporated as an obligation of member states. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
To review important issues that address respect for patient autonomy, beneficnce, non-maleficence, and justice, which are included in communication surrounding the determination of decision-making capacity, informed consent, breaking bad news, and creating shared goals of care. Review articles, and government and organizational reports. Palliative care and its proximity to end-of-life care issues frequently raises ethical issues for patients, their families, and the clinicians caring for them. Supporting the identification and honoring the patient's preferences for treatment are central components of ethical behavior. Advance care planning provides an important opportunity for respecting patient autonomy and may be helpful when discussing care options surrounding resuscitation, withholding or withdrawal of treatment, or the determination of medical futility.
Muir, J. Cameron; Krammer, Lisa M.; von Gunten, Charles F.
Describes the elements of a program in hospice and palliative medicine that may serve as a model of an effective system of physician education. Topics for the palliative-care curriculum include hospice medicine, breaking bad news, pain management, the process of dying, and managing personal stress. (JOW)
Hui, David; Bruera, Eduardo
Over the past five decades, palliative care has evolved from serving patients at the end of life into a highly specialized discipline focused on delivering supportive care to patients with life-limiting illnesses throughout the disease trajectory. A growing body of evidence is now available to inform the key domains in the practice of palliative care, including symptom management, psychosocial care, communication, decision-making, and end-of-life care. Findings from multiple studies indicate that integrating palliative care early in the disease trajectory can result in improvements in quality of life, symptom control, patient and caregiver satisfaction, illness understanding, quality of end-of-life care, survival, and costs of care. In this narrative Review, we discuss various strategies to integrate oncology and palliative care by optimizing clinical infrastructures, processes, education, and research. The goal of integration is to maximize patient access to palliative care and, ultimately, to improve patient outcomes. We provide a conceptual model for the integration of supportive and/or palliative care with primary and oncological care. We also discuss how health-care systems and institutions need to tailor integration based on their resources, size, and the level of primary palliative care available.
Hui, David; Bruera, Eduardo
Over the past five decades, palliative care has evolved from serving patients at the end of life into a highly specialized discipline focused on delivering supportive care to patients with life-limiting illnesses throughout the disease trajectory. A growing body of evidence is now available to inform the key domains in the practice of palliative care, including symptom management, psychosocial care, communication, decision-making, and end-of-life care. Findings from multiple studies indicate that integrating palliative care early in the disease trajectory can result in improvements in quality of life, symptom control, patient and caregiver satisfaction, quality of end-of-life care, survival, and costs of care. In this narrative Review, we discuss various strategies to integrate oncology and palliative care by optimizing clinical infrastructures, processes, education, and research. The goal of integration is to maximize patient access to palliative care and, ultimately, to improve patient outcomes. We provide a conceptual model for the integration of supportive and/or palliative care with primary and oncological care. We end by discussing how health-care systems and institutions need to tailor integration based on their resources, size, and the level of primary palliative care available. PMID:26598947
Dacher, Joan E
Palliative care is emerging as an alternative care paradigm for critically ill older patients in the critical care setting. Critical care nurses are well positioned to take on a leadership role in reconceptualizing care in the critical care unit, and creating the space and opportunity for palliative care. This article provides information on the practice of palliative care with critically ill older adults along with evidence-based content and resources, allowing critical care nurses to advocate for palliative care in their own work environments accompanied by the necessary resources that will support efficient implementation. Copyright © 2014 Elsevier Inc. All rights reserved.
Lim, Christopher T; Tadmor, Avia; Fujisawa, Daisuke; MacDonald, James J; Gallagher, Emily R; Eusebio, Justin; Jackson, Vicki A; Temel, Jennifer S; Greer, Joseph A; Hagan, Teresa; Park, Elyse R
While vast opportunities for using qualitative methods exist within palliative care research, few studies provide practical advice for researchers and clinicians as a roadmap to identify and utilize such opportunities. To provide palliative care clinicians and researchers descriptions of qualitative methodology applied to innovative research questions relative to palliative care research and define basic concepts in qualitative research. Body: We describe three qualitative projects as exemplars to describe major concepts in qualitative analysis of early palliative care: (1) a descriptive analysis of clinician documentation in the electronic health record, (2) a thematic content analysis of palliative care clinician focus groups, and (3) a framework analysis of audio-recorded encounters between patients and clinicians as part of a clinical trial. This study provides a foundation for undertaking qualitative research within palliative care and serves as a framework for use by other palliative care researchers interested in qualitative methodologies.
Lazzarin, P; Schiavon, B; Brugnaro, L; Benini, F
This Italian study investigated home-based palliative care for young children and how long it took parents to meet their needs. The study population consisted of 33 families with a child under the responsibility of the Veneto Regional Center for Pediatric Palliative Care, northern Italy, who needed medical support in at least two of the following areas: respiratory, feeding, pain and seizures. The children had a mean age of 6.8 ± 4.7 years. We found that 72% of the patients needed medical devices for feeding, 36% had a tracheostomy and 55% were on mechanical ventilatory support. The children needed an average of five different life-supporting medical appliances, and the time taken to provide for their care increased significantly with each additional appliance (p = 0.016). Their most time-consuming daily needs were feeding (174 minutes) and support when they woke up at night (67 minutes). The average daily time that parents spent taking care of their child amounted to eight hours and 54 minutes per day. Parents providing palliative care for children with life-limiting diseases spent an average of nine hours a day caring for them each day and had to maintain an average of five medical appliances. ©2017 Foundation Acta Paediatrica. Published by John Wiley & Sons Ltd.
Hermsen, Maaike A; ten Have, Henk A M J
With the growth of palliative care services, interest in moral issues also seems to be growing. The controversial issue of euthanasia significantly provokes moral reflection on the care for dying patients. This article presents an analysis of the moral issue of euthanasia as it is discussed by the palliative care community in the professional journals of palliative care. Initially, the analysis will focus on describing the characteristics of the publications about euthanasia and the attitudes expressed in the articles towards this practice. Second, attention will be paid to the description of the uses of the term euthanasia in the various articles and also how frequently such uses occur. Third, the various arguments in support for or against a place for euthanasia in palliative care will be discussed.
"Nothing is more powerful than an idea whose time has come." (Victor Hugo) Originally referring to the beginning of the enlightenment (reconnaissance) of the French revolution the transcription of this words regarding to German palliative Care structures would mean a tremendous effort. The meaning of the new idea is a holistic kind of care for patients with a chronic disease at the end of their lives, so that they can die as most self determined as possible at a location of their choice. The special aim of palliative care, the need of interdisciplinary cooperation leading to multidisciplinary solutions is pointed out. The meaning of palliative care team as a team with special communication skills in between the team and with further cooperating partners is described. Communication in palliative care means more than telling facts.
Mosoiu, Daniela; Dumitrescu, Malina; Connor, Stephen R
Palliative care services have been reported to be a less expensive alternative to traditional treatment; however, little is known about how to measure the cost of delivering quality palliative care. The purpose of this project was to develop a standardized method for measuring the cost of palliative care delivery that could potentially be replicated in multiple settings. The project was implemented in three stages. First, an interdisciplinary group of palliative care experts identified standards of quality palliative care delivery in the inpatient and home care services. Surveys were conducted of government agencies and palliative care providers to identify payment practices and budgets for palliative care services. In the second phase, unit costs were defined and a costing framework was designed to measure inpatient and home-based palliative care unit costs. The final phase was advocacy for inclusion of calculated costs into the national funding system. In this project, a reliable framework for determining the cost of inpatient and home-based palliative care services was developed. Inpatient palliative care cost in Romania was calculated at $96.58 per day. Home-based palliative care was calculated at $30.37 per visit, $723.60 per month, and $1367.71 per episode of care, which averaged 45 visits. A standardized methodology and framework for costing palliative care are presented. The framework allows a country or provider of care to substitute their own local costs to generate cost information relevant to the health-care system. In Romania, this allowed the palliative care provider community to advocate for a consistent payment system. Copyright © 2014 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Suvarnabhumi, Krishna; Sowanna, Non; Jiraniramai, Surin; Jaturapatporn, Darin; Kanitsap, Nonglak; Soorapanth, Chiroj; Thanaghumtorn, Kanate; Limratana, Napa; Akkayagorn, Lanchasak; Staworn, Dusit; Praditsuwan, Rungnirand; Uengarporn, Naporn; Sirithanawutichai, Teabaluck; Konchalard, Komwudh; Tangsangwornthamma, Chaturon; Vasinanukorn, Mayuree; Phungrassami, Temsak
The Thai Medical School Palliative Care Network conducted this study to establish the current state of palliative care education in Thai medical schools. A questionnaire survey was given to 2 groups that included final year medical students and instructors in 16 Thai medical schools. The questionnaire covered 4 areas related to palliative care education. An insufficient proportion of students (defined as fewer than 60%) learned nonpain symptoms control (50.0%), goal setting and care planning (39.0%), teamwork (38.7%), and pain management (32.7%). Both medical students and instructors reflected that palliative care education was important as it helps to improve quality of care and professional competence. The percentage of students confident to provide palliative care services under supervision of their senior, those able to provide services on their own, and those not confident to provide palliative care services were 57.3%, 33.3%, and 9.4%, respectively. The lack of knowledge in palliative care in students may lower their level of confidence to practice palliative care. In order to prepare students to achieve a basic level of competency in palliative care, each medical school has to carefully put palliative care content into the undergraduate curriculum.
Munday, Dan; Dale, Jeremy
Primary care has a vital role in delivering palliative care. In most developed countries more people die in hospital than at home, although substantially more people would prefer to die at home. Primary care professionals play a central role in optimising available care, but they often lack the processes and resources to do this effectively.
Furumoto, Naoko; Hirose, Kyoko; Shobatake, Tadataka; Yano, Hidemi; Okazaki, Noriko
In home palliative care, care managers play an important part. But we suspect that care managers, who don't have a medical license, may feel an anxiety. So, we investigated if these care managers felt an anxiety, and would like to report a role of nursing staffs in home palliative care. We surveyed care managers who were working in the western part of Hiroshima. The number of care managers was 199. And 129 of them(86.9%)filled out the questionnaire. We used c 2 -test and analyzed the difference of an anxiety between nursing staffs and the others. The care managers felt an anxiety about the patient's condition and the therapy rather than nursing staffs. Nursing staffs play an important role by doing a therapeutic management for terminal cancer patients, an explanation for the family of patients, and a cooperation with other staffs.
Interdisciplinary model for palliative care in the trauma and surgical intensive care unit: Robert Wood Johnson Foundation Demonstration Project for Improving Palliative Care in the Intensive Care Unit.
Mosenthal, Anne C; Murphy, Patricia A
Integrating palliative care into the surgical and trauma intensive care unit is challenging. The nature of surgical illness, practice patterns of surgeons and critical care nurses, and the culture of the intensive care unit all suggest that familiar models of palliative care do not apply in this setting. We describe a novel interdisciplinary model of palliative care in the surgical intensive care unit, which addresses communication, shared decision making, and pain and symptom management for all critically ill patients, regardless of prognosis. This communication-based model integrates new processes of care into existing surgical critical care practice so that palliative care can be provided in parallel with surgical care.
Full Text Available ... The story demonstrates how palliative care can positively influence a patient's and family's experience with illness. Category ... of Life and palliative care: Thinking about the words we use - Duration: 4:48. Social Care Institute ...
Weissman, David E; Morrison, R Sean; Meier, Diane E
Data collection and analysis are vital for strategic planning, quality improvement, and demonstration of palliative care program impact to hospital administrators, private funders and policymakers. Since 2000, the Center to Advance Palliative Care (CAPC) has provided technical assistance to hospitals, health systems and hospices working to start, sustain, and grow nonhospice palliative care programs. CAPC convened a consensus panel in 2008 to develop recommendations for specific clinical and customer metrics that programs should track. The panel agreed on four key domains of clinical metrics and two domains of customer metrics. Clinical metrics include: daily assessment of physical/psychological/spiritual symptoms by a symptom assessment tool; establishment of patient-centered goals of care; support to patient/family caregivers; and management of transitions across care sites. For customer metrics, consensus was reached on two domains that should be tracked to assess satisfaction: patient/family satisfaction, and referring clinician satisfaction. In an effort to ensure access to reliably high-quality palliative care data throughout the nation, hospital palliative care programs are encouraged to collect and report outcomes for each of the metric domains described here.
Dy, Sydney M.; Roy, Jayashree; Ott, Geoffrey E.; McHale, Michael; Kennedy, Christine; Kutner, Jean S.; Tien, Allen
Context Routine electronic patient-reported outcome collection in patients with advanced disease could improve communication among patients, caregivers and providers and improve the timeliness of identifying problems and effectiveness of follow-up. Objective To develop a web-based tool to collect symptoms and need data and provide feedback to hospice and palliative care patients, caregivers and providers. Methods We developed Tell Us™ based on an existing pure web technology platform, the Medical Decision Logic, Inc. (“mdlogix”) Health Science Process Framework (HSPF™). The software development process included eliciting information on systems and needs and mapping care processes with three diverse hospices, and soliciting ideas for the software from clinicians and researchers. We developed a prototype software product, incorporated the hospices’ processes, assessment questions, and educational materials, and refined the product with feedback from other hospice and palliative care professionals. Results Tell Us includes modules for authoring and deploying clinical queries and completion schedules; for enrolling clinical sites and patients for patients and/or families to complete assigned assessments on a scheduled basis; and for providers to view patient-reported data. Tell Us provides customizable automated provider e-mail alerts based on patient responses (such as uncontrolled symptoms or need for medication refills) and provides educational materials targeted to patient needs. Conclusions This web-based toolset may be useful for improving communication between hospice and palliative care patients, caregivers, and providers and proactive patient management. Future research will involve integrating the software into care and evaluating its feasibility and use for data collection, patient education, and improving outcomes. PMID:21458214
Brazil, K.; Galway, K.; Carter, G.; Steen, J.T. van der
BACKGROUND: The European Association for Palliative Care (EAPC) recently issued a framework that defines optimal palliative care in dementia. However, implementation of the guidelines may pose challenges for physicians working with dementia patients in practice. OBJECTIVE: To measure and compare the
Khan, Luluel; Zeng, Liang; Cella, David; Thavarajah, Nemica; Chen, Emily; Zhang, Liying; Bennett, Margaret; Peckham, Kenneth; De Costa, Sandra; Beaumont, Jennifer L; Tsao, May; Danjoux, Cyril; Barnes, Elizabeth; Sahgal, Arjun; Chow, Edward
To examine the agreement of Health Care Providers (HCPs) and patients' evaluation of quality of life on the Functional Assessment of Chronic Illness therapy - Palliative care module (FACIT-Pal) scale. Sixty advanced cancer patients and fifty-six health care providers involved in their care at Sunnybrook Health Sciences Centre completed a modified version of the FACIT- Pal. In the survey, patients and HCPs indicated the 10 top issues affecting the quality of life of patients with advanced cancer most profoundly. The percentage of participants selecting each item as one of their 10 most relevant items was calculated in HCPs and patients. There were differences in relative rankings of QOL issues among patients and HCPs. Among the top 10 items which were identified from both patients and HCPs, there were differences in the rankings. Patients ranked emotional support from family (40.9%) as most important followed by pain (38.6%), lack of energy (31.8%) and able to enjoy life (29.6%). HCPs ranked in the following order: pain (73.2%), lack of energy (63.4%), nausea (51.2%) and dyspnea (51.2%) whereas patients rated nausea at 18.2 % and dyspnea at 9.09%. There is a discrepancy between scores of patients and HCPs as they may prioritize differently. HCPs tended to put more emphasis on physical symptoms, whereas patients had emotional and global issues as priorities.
Full Text Available Terrah L Foster,1,2 Cynthia J Bell,1 Carey F McDonald,2 Joy S Harris,3 Mary Jo Gilmer,1,21Vanderbilt University School of Nursing, Nashville, 2Monroe Carell Jr Children's Hospital at Vanderbilt, Nashville, 3Vanderbilt University, Nashville, TN, USAAbstract: Pediatric palliative care aims to enhance life and decrease suffering of children and adolescents living with life-threatening conditions and their loved ones. Oncology nurses are instrumental in providing palliative care to pediatric oncology populations. This paper describes pediatric palliative care and provides an overview of literature related to the physical, psychological, social, and spiritual domains of palliative nursing care for children and adolescents with cancer. Nurses can provide optimal palliative care by accounting for children's understanding of death, encouraging early initiation of palliative care services, and improving utilization of pediatric palliative care in cancer settings. Specific roles of registered nurses and advanced practice nurses in pediatric palliative care will be addressed. Recommendations for future research are made to further advance the science of pediatric palliative care and decrease suffering for children and teens with cancer.Keywords: pediatric palliative care, pediatric cancer, oncology, child, suffering
Kelley, Mary Lou; Prince, Holly; Monture, Lori; Maki, Luanne; Crow, Maxine; Smith, Jeroline
First Nations people in Canada are ageing with a high burden of chronic, progressive, and life-limiting illness. The majority now die in urban hospitals or long term care homes far away from family and culture. Today, First Nations community leaders are working to build local community capacity to support people and their families who choose to die at home. This presentation describes a five year participatory action research project that has enhanced local palliative care capacity in four First Nations communities using innovative strategies for collaboration, education, and advocacy (www.eolfn.lakeheadu.ca). The process of community capacity development was locally driven and controlled. A local leader and advisory committee implemented a palliative care community assessment that identified resources and needs for community awareness, health provider education, service development and improved partnerships with external health care providers (physicians, hospitals etc) providing care to community members. Innovative strategies to address these needs were developed, implemented and evaluated. If services and community supports were available, 87% of the FN community participants would prefer to die at home. Each of the four participating FN communities developed a unique palliative care program model responsive to community culture and context. Culturally appropriate videos and print resources for education and community development were created to share internationally. First Nations communities have the desire and capacity to care for community members to the end of their lives. Community development and advocacy are required to support First Nations in addressing existing barriers and gaps in education, policy and service delivery. © 2015, Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.
Kamal, Arif H; Hanson, Laura C; Casarett, David J; Dy, Sydney M; Pantilat, Steven Z; Lupu, Dale; Abernethy, Amy P
Palliative medicine must prioritize the routine assessment of the quality of clinical care we provide. This includes regular assessment, analysis, and reporting of data on quality. Assessment of quality informs opportunities for improvement and demonstrates to our peers and ourselves the value of our efforts. In fact, continuous messaging of the value of palliative care services is needed to sustain our discipline; this requires regularly evaluating the quality of our care. As the reimbursement mechanisms for health care in the U.S. shift from fee-for-service to fee-for-value models, palliative care will be expected to report robust data on quality of care. We must move beyond demonstrating to our constituents (including patients and referrers), "here is what we do," and increase the focus on "this is how well we do it" and "let us see how we can do it better." It is incumbent on palliative care professionals to lead these efforts. This involves developing standardized methods to collect data without adding additional burden, comparing and sharing our experiences to promote discipline-wide quality assessment and improvement initiatives, and demonstrating our intentions for quality improvement on the clinical frontline. Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Merel, Susan E; Merel, Susan; DeMers, Shaune; Vig, Elizabeth
Because neurodegenerative dementias are progressive and ultimately fatal, a palliative approach focusing on comfort, quality of life, and family support can have benefits for patients, families, and the health system. Elements of a palliative approach include discussion of prognosis and goals of care, completion of advance directives, and a thoughtful approach to common complications of advanced dementia. Physicians caring for patients with dementia should formulate a plan for end-of-life care in partnership with patients, families, and caregivers, and be prepared to manage common symptoms at the end of life in dementia, including pain and delirium. Copyright © 2014 Elsevier Inc. All rights reserved.
Janssen, Daisy J A; Johnson, Miriam J; Spruit, Martijn A
The unmet palliative care needs of patients with chronic heart failure (CHF) are well known. Palliative care needs assessment is paramount for timely provision of palliative care. The present review provides an overview of palliative care needs assessment in patients with CHF: the role of prognostic tools, the role of the surprise question, and the role of palliative care needs assessment tools. Multiple prognostic tools are available, but offer little guidance for individual patients. The surprise question is a simple tool to create awareness about a limited prognosis, but the reliability in CHF seems less than in oncology and further identification and assessment of palliative care needs is required. Several tools are available to identify palliative care needs. Data about the ability of these tools to facilitate timely initiation of palliative care in CHF are lacking. Several tools are available aiming to facilitate timely introduction of palliative care. Focus on identification of needs rather than prognosis appears to be more fitting for people with CHF. Future studies are needed to explore whether and to what extent these tools can help in addressing palliative care needs in CHF in a timely manner.
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Morrison, R. Sean
Objective: To identify barrier to achieving universal access to high quality palliative care in Canada, review published national strategies and frameworks to promote palliative care, examine key aspects that have been linked to successful outcomes, and make recommendations for Canada.
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Midorikawa, Yasuhiko; Suzushino, Seiko; Tamotsu, Kiyokazu
We conducted home care and home palliative care from the department of home care. We provided home care services to 190 patients(105 men, 85 women)in October 2013. Their average age was 78.7(range: 32-102)years old, and home care had been underway from 1 day to 8 years, 10 months. Among all participants, 168(88.4%)suffered from malignant diseases, 168 patients had died, and over half of deceased patients(88 out of 168)had died at home. We used opioids for control of cancer pain, carried out home parenteral nutrition(HPN), home enteral nutrition(HEN), percutaneous endoscopic gastrostomy( PEG), and removed pleural effusion and ascites during home care. In order to facilitate the practice of palliative care by the palliative care team, which consists of various medical staff in the hospital, we are giving high priority to education and enlightenment in the hospital. To provide enlightenment, education, and cooperation between regional home care and home palliative care, we are also conducting educational lectures in the regional party of the Iwaki city medical associate, and providing combined educational-medical training for home care and home palliative care by various medical staff.
Murray, Scott A; Firth, Adam; Schneider, Nils; Van den Eynden, Bart; Gomez-Batiste, Xavier; Brogaard, Trine; Villanueva, Tiago; Abela, Jurgen; Eychmuller, Steffen; Mitchell, Geoffrey; Downing, Julia; Sallnow, Libby; van Rijswijk, Erik; Barnard, Alan; Lynch, Marie; Fogen, Frederic; Moine, Sébastien
A multidisciplinary European Association of Palliative Care Taskforce was established to scope the extent of and learn what facilitates and hinders the development of palliative care in the community across Europe. To document the barriers and facilitators for palliative care in the community and to produce a resource toolkit that palliative care specialists, primary care health professionals or policymakers, service developers, educationalists and national groups more generally could use to facilitate the development of palliative care in their own country. (1) A survey instrument was sent to general practitioners with knowledge of palliative care services in the community in a diverse sample of European countries. We also conducted an international systematic review of tools used to identify people for palliative care in the community. (2) A draft toolkit was then constructed suggesting how individual countries might best address these issues, and an online survey was then set up for general practitioners and specialists to make comments. Iterations of the toolkit were then presented at international palliative care and primary care conferences. Being unable to identify appropriate patients for palliative care in the community was a major barrier internationally. The systematic review identified tools that might be used to help address this. Various facilitators such as national strategies were identified. A primary palliative care toolkit has been produced and refined, together with associated guidance. Many barriers and facilitators were identified. The primary palliative care toolkit can help community-based palliative care services to be established nationally. © The Author(s) 2014.
Ivanyushkin, A Y; Khetagurova, A K
The article addresses the history of establishing hospices in Russia complying with international WHO documents. The article also presents the ethics of palliative medicine in the Russian Federation with an objective analysis of the diseases affecting patients with special highlights on social problems.
The aim of this article is to demonstrate how a novel yet important tool can facilitate family involvement in person-centred care, despite geographical distance. The author presents a case study as an in-depth example of the use of Skype in the context of palliative care at home. Skype enhanced family surveillance and symptom management, augmented shared decision making, provided a space for virtual bedside vigil, and ultimately provided the rapport necessary for optimal end of life care.
Khosla, Divya; Patel, Firuza D; Sharma, Suresh C
Despite its limited coverage, palliative care has been present in India for about 20 years. Obstacles in the growth of palliative care in India are too many and not only include factors like population density, poverty, geographical diversity, restrictive policies regarding opioid prescription, workforce development at base level, but also limited national palliative care policy and lack of institutional interest in palliative care. Nonetheless we have reasons to be proud in that we have overcome several hurdles and last two decades have seen palpable changes in the mindset of health care providers and policy makers with respect to need of palliative care in India. Systematic and continuous education for medical staff is mandatory, and a major break-through for achieving this purpose would be to increase the number of courses and faculties in palliative medicine at most universities. PMID:23439559
Khosla, Divya; Patel, Firuza D; Sharma, Suresh C
Despite its limited coverage, palliative care has been present in India for about 20 years. Obstacles in the growth of palliative care in India are too many and not only include factors like population density, poverty, geographical diversity, restrictive policies regarding opioid prescription, workforce development at base level, but also limited national palliative care policy and lack of institutional interest in palliative care. Nonetheless we have reasons to be proud in that we have overcome several hurdles and last two decades have seen palpable changes in the mindset of health care providers and policy makers with respect to need of palliative care in India. Systematic and continuous education for medical staff is mandatory, and a major break-through for achieving this purpose would be to increase the number of courses and faculties in palliative medicine at most universities.
Full Text Available Despite its limited coverage, palliative care has been present in India for about 20 years. Obstacles in the growth of palliative care in India are too many and not only include factors like population density, poverty, geographical diversity, restrictive policies regarding opioid prescription, workforce development at base level, but also limited national palliative care policy and lack of institutional interest in palliative care. Nonetheless we have reasons to be proud in that we have overcome several hurdles and last two decades have seen palpable changes in the mindset of health care providers and policy makers with respect to need of palliative care in India. Systematic and continuous education for medical staff is mandatory, and a major break-through for achieving this purpose would be to increase the number of courses and faculties in palliative medicine at most universities.
Cassel, J Brian; Bowman, Brynn; Rogers, Maggie; Spragens, Lynn H; Meier, Diane E
Between 2000 and 2015 the proportion of US hospitals with more than fifty beds that had palliative care programs tripled, from 25 percent to 75 percent. The rapid adoption of this high-value program, which is voluntary and runs counter to the dominant culture in US hospitals, was catalyzed by tens of millions of dollars in philanthropic support for innovation, dissemination, and professionalization in the palliative care field. We describe the dissemination strategies of the Center to Advance Palliative Care in the context of the principles of social entrepreneurship, and we provide an in-depth look at its hallmark training initiative, Palliative Care Leadership Centers. Over 1,240 hospital palliative care teams have trained at the Leadership Centers to date, with 80 percent of them instituting palliative care services within two years. We conclude with lessons learned about the role of purposeful technical assistance in promoting the rapid diffusion of high-value health care innovation.
Aslakson, Rebecca A.; Curtis, J. Randall; Nelson, Judith E.
Objectives Palliative care is an interprofessional specialty as well as an approach to care by all clinicians caring for patients with serious and complex illness. Unlike hospice, palliative care is based not on prognosis but on need and is an essential component of comprehensive care for critically ill patients from the time of ICU admission. In this clinically focused article, we review evidence of opportunities to improve palliative care for critically ill adults, summarize strategies for ICU palliative care improvement, and identify resources to support implementation. Data Sources We searched the MEDLINE database from inception through January 2014. We also searched the Reference Library of The Improving Palliative Care in the ICU Project website sponsored by the National Institutes of Health and the Center to Advance Palliative Care, which is updated monthly. We hand-searched reference lists and author files. Study Selection Selected studies included all English-language articles concerning adult patients using the search terms "intensive care" or "critical care" with "palliative care," "supportive care," "end-of-life care," or "ethics." Data Extraction After examination of peer-reviewed original scientific articles, consensus statements, guidelines, and reviews resulting from our literature search, we made final selections based on author consensus. Data Synthesis Existing evidence is organized to address: 1) opportunities to alleviate physical and emotional symptoms, improve communication, and provide support for patients and families; 2) models and specific interventions for improving ICU palliative care; 3) available resources for ICU palliative care improvement; and 4) ongoing challenges and targets for future research. Key domains of ICU palliative care have been defined and operationalized as measures of quality. There is increasing recognition that effective integration of palliative care during acute and chronic critical illness may help patients and
Emmons, Kevin R; Dale, Barbara; Crouch, Cathy
In part 1 of this 2-part series, we discussed principles of palliative care to help understand the goals of treatment in developing a plan of care. This article, Part 2, aims to provide knowledge of practical topical wound management by common wound etiologies and symptoms among persons who would benefit from palliative wound care.
Chong, LeeAi; Abdullah, Adina
The aim of this study was to explore the experience of community palliative care nurses providing home care to children. A qualitative study was conducted at the 3 community palliative care provider organizations in greater Kuala Lumpur from August to October 2014. Data were collected with semistructured interviews with 16 nurses who have provided care to children and was analyzed using thematic analysis. Two categories were identified: (1) challenges nurses faced and (2) coping strategies. The themes identified from the categories are (1) communication challenges, (2) inadequate training and knowledge, (3) personal suffering, (4) challenges of the system, (5) intrapersonal coping skills, (6) interpersonal coping strategies, and (7) systemic supports. These results reinforces the need for integration of pediatric palliative care teaching and communication skills training into all undergraduate health care programs. Provider organizational support to meet the specific needs of the nurses in the community can help retain them in their role. It will also be important to develop standards for current and new palliative care services to ensure delivery of quality pediatric palliative care.
Boersma, Isabel; Miyasaki, Janis; Kutner, Jean; Kluger, Benzi
Palliative care is an approach to the care of patients and families facing progressive and chronic illnesses that focuses on the relief of suffering due to physical symptoms, psychosocial issues, and spiritual distress. As neurologists care for patients with chronic, progressive, life-limiting, and disabling conditions, it is important that they understand and learn to apply the principles of palliative medicine. In this article, we aim to provide a practical starting point in palliative medicine for neurologists by answering the following questions: (1) What is palliative care and what is hospice care? (2) What are the palliative care needs of neurology patients? (3) Do neurology patients have unique palliative care needs? and (4) How can palliative care be integrated into neurology practice? We cover several fundamental palliative care skills relevant to neurologists, including communication of bad news, symptom assessment and management, advance care planning, caregiver assessment, and appropriate referral to hospice and other palliative care services. We conclude by suggesting areas for future educational efforts and research. © 2014 American Academy of Neurology.
Broeckaert, B; Gielen, J; Iersel, T. van; Van den Branden, S
Aims: To Study the religious and ideological views and practice of Palliative Care physician towards Euthanasia. Materials and Methods: An anonymous self administered questionnaire approved by Flemish Palliative Care Federation and its ethics steering group was sent to all physicians(n-147) working in Flemish Palliative Care. Questionnaire consisted of three parts. In first part responded were requested to provide demographic information. In second part the respondents were asked to provi...
Yoshida, Saran; Miyashita, Mitsunori; Morita, Tatsuya; Akizuki, Nobuya; Akiyama, Miki; Shirahige, Yutaka; Ichikawa, Takayuki; Eguchi, Kenji
This study primarily aimed to identify future actions required to promote palliative care in Japan. The future actions regarded as effective by the general population were "improve physicians' skill in palliative care" (61%), "create a counseling center for cancer" (61%), and "improve nurses' skill in palliative care" (60%). In contrast, future actions regarded as effective by the health care professionals were "set up a Web site that provides information about cancer" (72%), "promote consultation with specialists in palliative care" (71%), and "open an outpatient department specializing in palliative care" (70%). The results suggest (1) development and maintenance of settings; (2) enhancement of palliative care education and training programs for health care providers; and (3) improvement in distributing information about cancer and regional palliative care resources to the general population. © The Author(s) 2014.
Kamal, Arif H.; Hanson, Laura C.; Casarett, David J.; Dy, Sydney M.; Pantilat, Steven Z.; Lupu, Dale; Abernethy, Amy P.
Palliative medicine must prioritize the routine assessment of the quality of clinical care we provide. This includes regular assessment, analysis, and reporting of data on quality. Assessment of quality informs opportunities for improvement and demonstrates to our peers and ourselves the value of our efforts. In fact, continuous messaging of the value of palliative care services is needed to sustain our discipline; this requires regularly evaluating the quality of our care. As the reimbursement mechanisms for health care in the United States shift from fee-for-service to fee-for-value models, palliative care will be expected to report robust data on quality of care. We must move beyond demonstrating to our constituents (including patients and referrers), “here is what we do,” and increase the focus on “this is how well we do it” and “let’s see how we can do it better.” It is incumbent on palliative care professionals to lead these efforts. This involves developing standardized methods to collect data without adding additional burden, comparing and sharing our experiences to promote discipline-wide quality assessment and improvement initiatives, and demonstrating our intentions for quality improvement on the clinical frontline. PMID:25057987
Bekelman, David B; Rabin, Borsika A; Nowels, Carolyn T; Sahay, Anju; Heidenreich, Paul A; Fischer, Stacy M; Main, Deborah S
The Institute of Medicine recommends people with serious advanced illness have access to skilled palliative care. However, the predominant delivery model of nonhospice palliative care is inpatient, consultative care focused on the end of life, with a small specialist palliative care workforce. The study objective was to understand organizational factors that could influence the adoption and scale-up of outpatient palliative care in chronic advanced illness, using the example of heart failure. This was a cross-sectional qualitative study. Participants were 17 health care providers and local, regional, and national health system leaders from the Veterans Health Administration (VHA) who were considering whether and how to adopt and sustain outpatient palliative care. Individual interviews using semistructured questions assessed domains of the Consolidated Framework for Implementation Science. Most providers and leaders perceived outpatient palliative care as high priority in the VHA given its patient-centeredness and potential to decrease health care use and costs associated with conditions like heart failure. They also supported a collaborative care team model of outpatient palliative care delivery where a palliative care specialist collaborates with medical nurses and social workers. They reported lack of performance measures/incentives for patient-centered care processes and outcomes as a potential barrier to implementation. Features of outpatient palliative care viewed as important for successful adoption and scale-up included coordination and communication with other providers, ease of integration into existing programs, and evidence of improving quality of care while not substantially increasing overall health care costs. Incentives such as performance measures and collaboration with local VHA providers and leaders could improve adoption and scale-up of outpatient palliative care.
Downing, J; Kiman, R; Boucher, S; Nkosi, B; Steel, B; Marston, C; Lascar, E; Marston, J
The International Children’s Palliative Care Network held its second international conference on children’s palliative care in Buenos Aires, Argentina, from the 18th–21st May 2016. The theme of the conference was ‘Children’s Palliative Care…. Now!’ emphasising the need for palliative care for children now, as the future will be too late for many of them. Six pre-conference workshops were held, addressing issues connected to pain assessment and management, adolescent palliative care, ethics and decision-making, developing programmes, the basics of children’s palliative care, and hidden aspects of children’s palliative care. The conference brought together 410 participants from 40 countries. Plenary, concurrent, and poster presentations covered issues around the status of children’s palliative care, genetics, perinatal and neonatal palliative care, the impact of children’s palliative care and the experiences of parents and volunteers, palliative care as a human right, education in children’s palliative care, managing complex pain in children, spiritual care and when to initiate palliative care. The ‘Big Debate’ explored issues around decision-making and end of life care in children, and gave participants the opportunity to explore a sensitive and thought provoking topic. At the end of the conference, delegates were urged to sign the Commitment of Buenos Aires which called for governments to implement the WHA resolution and ensure access to palliative care for neonates, children and their families, and also commits us as palliative care providers to share all that we can and collaborate with each other to achieve the global vision of palliative care for all children who need it. The conference highlighted the ongoing issues in children’s palliative care and participants were continually challenged to ensure that children can access palliative care NOW. PMID:27610193
Abernethy, Amy P; Capell, Warren H; Aziz, Noreen M; Ritchie, Christine; Prince-Paul, Maryjo; Bennett, Rachael E; Kutner, Jean S
Palliative care has faced moral and ethical challenges when conducting research involving human subjects. There are currently no resources to guide institutional review boards (IRBs) in applying standard ethical principles and terms-in a specific way-to palliative care research. Using as a case study a recently completed multisite palliative care clinical trial, this article provides guidance and recommendations for both IRBs and palliative care investigators to facilitate communication and attain the goal of conducting ethical palliative care research and protecting study participants while advancing the science. Beyond identifying current challenges faced by palliative care researchers and IRBs reviewing palliative care research, this article suggests steps that the palliative care research community can take to establish a scientifically sound, stable, productive, and well-functioning relationship between palliative care investigators and the ethical bodies that oversee their work. Copyright © 2014 American Academy of Hospice and Palliative Medicine. All rights reserved.
circle. Honest reassuring discus- sion, normalising fear, is usually sufficient. SEXUALITY. Professionals working in palliative care must be prepared to help patients and their partners with their sexual needs.This whole area ... listening, a response of acceptance, an openness to individuality. . .to be a presence. CULTURE.
centres or Ndi Moyo. Although it is still in its infancy Ndi. Moyo is now well placed to become the flagship for palliative care in Malawi. Table 1 - Diagnosis of NdiMoyo patients. Diagnosis. 24 Months. Aug '06-Sept '08. Frequency. No. %. Abdominal Tumour. 1. 0.38%. Ameloblastoma, cancer. 1. 0.38%. Anal cancer. 1. 0.38%.
de Visser, Marianne; Oliver, David J.
Purpose of review Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness. Neuromuscular disorders (NMDs) are characterized by progressive muscle weakness, leading to pronounced and incapacitating
Colman, Rebecca E.; Curtis, J. Randall; Nelson, Judith E.; Efferen, Linda; Hadjiliadis, Denis; Levine, Deborah J.; Meyer, Keith C.; Padilla, Maria; Strek, Mary; Varkey, Basil
Background: The provision of effective palliative care is of great importance to patients awaiting lung transplantation. Although the prospect of lung transplantation provides hope to patients and their families, these patients are usually very symptomatic from their underlying disease. Methods: An e-mail questionnaire was sent to members of the American College of Chest Physicians’ Transplant NetWork and the Pulmonary Council of the International Society for Heart and Lung Transplantation (ISHLT). The survey included questions about barriers to providing palliative care, the availability of palliative care services, and recommended strategies to improve palliative care for lung transplant candidates. Results: The 158 respondents represented approximately 65% of transplant programs in the ISHLT registry. Respondents were in practice a mean of 11.3 (± 9) years, 70% were pulmonologists, 17% were surgeons, and 13% were other care providers. Barriers were classified into domains including patient factors, family factors, physician factors, and institutional/transplant program/lung allocation system factors. Significant patient/family barriers included unrealistic patient/family expectations about survival, unwillingness to plan end-of-life care, concerns about abandonment or inappropriate care after enrollment in a palliative care program, and family disagreements about care goals. For institutional/program/allocation system barriers, only the requirement for weight loss or gain to meet program-specific BMI requirements was identified. Significant physician barriers included competing time demands and the seemingly contradictory goals of transplant vs palliative care. Strategies recommended to improve palliative care included routine advance care planning for patients awaiting transplantation, access to palliative care specialists, training of transplant physicians in symptom management, and regular meetings among transplant physicians, nurses, patients, and
Collaborations in palliative care have helped to create a framework and identify preferred practices so the field of palliative care can grow. Teamwork designed in a transdisciplinary style is desired and provides whole-person, sensitive, and comprehensive care. In applying the basic key concepts and evidenced-based knowledge of palliative care, this article details one palliative care department's effort to create change, enhance the delivery of care, and build their palliative care practice. Creating collaborations and building partnerships were fundamental outcomes to improve the palliative care practice, increase transdisciplinary teamwork activities, and enhance the delivery of care in this organization.
Hermsen, M.A.; Have, H.A.M.J. ten
Working as a multidisciplinary or interdisciplinary team is an essential condition to provide good palliative care. This widespread assumption is based on the idea that teamwork makes it possible to address the various needs of the patient and family more effectively. This article is about teamwork
M R Rajagopal
Full Text Available Background: It is important to ensure that minimum standards for palliative care based on available resources are clearly defined and achieved. Aims: (1 Creation of minimum National Standards for Palliative Care for India. (2 Development of a tool for self-evaluation of palliative care organizations. (3 Evaluation of the tool in India. In 2006, Pallium India assembled a working group at the national level to develop minimum standards. The standards were to be evaluated by palliative care services in the country. Materials and Methods: The working group prepared a "standards" document, which had two parts - the first composed of eight "essential" components and the second, 22 "desirable" components. The working group sent the document to 86 hospice and palliative care providers nationwide, requesting them to self-evaluate their palliative care services based on the standards document, on a modified Likert scale. Results: Forty-nine (57% palliative care organizations responded, and their self-evaluation of services based on the standards tool was analyzed. The majority of the palliative care providers met most of the standards identified as essential by the working group. A variable percentage of organizations had satisfied the desirable components of the standards. Conclusions: We demonstrated that the "standards tool" could be applied effectively in practice for self-evaluation of quality of palliative care services.
Rajagopal, MR; Joad, Anjum Khan; Muckaden, Maryann; George, Reena; Gupta, Harmala; Leng, Mhoira EF; Palat, Gayatri; Patel, Firuza; Raghavan, Biju; Reddy, Suresh K; Sunilkumar, MM; Tiruvadanan, Mallika; Connor, Stephen R
Background: It is important to ensure that minimum standards for palliative care based on available resources are clearly defined and achieved. Aims: (1) Creation of minimum National Standards for Palliative Care for India. (2) Development of a tool for self-evaluation of palliative care organizations. (3) Evaluation of the tool in India. In 2006, Pallium India assembled a working group at the national level to develop minimum standards. The standards were to be evaluated by palliative care services in the country. Materials and Methods: The working group prepared a “standards” document, which had two parts – the first composed of eight “essential” components and the second, 22 “desirable” components. The working group sent the document to 86 hospice and palliative care providers nationwide, requesting them to self-evaluate their palliative care services based on the standards document, on a modified Likert scale. Results: Forty-nine (57%) palliative care organizations responded, and their self-evaluation of services based on the standards tool was analyzed. The majority of the palliative care providers met most of the standards identified as essential by the working group. A variable percentage of organizations had satisfied the desirable components of the standards. Conclusions: We demonstrated that the “standards tool” could be applied effectively in practice for self-evaluation of quality of palliative care services. PMID:25191007
Wentlandt, K; Weiss, A; O'Connor, E; Kaya, E
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.
Full Text Available ... Duration: 5:53. CAPC Palliative 84,554 views 5:53 Portraits of Life, Love and Legacy through Pediatric Palliative Care - Duration: 5:39. Northeast Ohio Medical University (NEOMED) 22,405 ...
Huang, Hsiu-Li; Weng, Li-Chueh; Yeh, Mei Chang
Dementia is irreversible. Although currently available drugs are typically able to ameliorate symptoms and slow down its progress, there is yet no known cure for this disease. The inevitable consequence of dementia is the gradual deterioration of the condition until final decline into the end of life stage. The priority care plan for patients with end stage dementia, therefore, must focus on palliative care that provides for a comfortable and high as possible quality of life. However, dementia is rarely looked upon as an end-stage disease. In 2009, the Taiwan National Health Insurance began reimbursing the costs of hospice care for patients with end stage dementia. This paper discusses end stage dementia cases in which patients received inappropriate interventions during their final days as well as the barriers faced in developing countries to providing palliative care. This paper also suggests strategies to promote quality of care and quality of life in people with end of life dementia.
Gelfman, Laura P; Kavalieratos, Dio; Teuteberg, Winifred G; Lala, Anuradha; Goldstein, Nathan E
Heart failure (HF) is a chronic and progressive illness, which affects a growing number of adults, and is associated with a high morbidity and mortality, as well as significant physical and psychological symptom burden on both patients with HF and their families. Palliative care is the multidisciplinary specialty focused on optimizing quality of life and reducing suffering for patients and families facing serious illness, regardless of prognosis. Palliative care can be delivered as (1) specialist palliative care in which a palliative care specialist with subspecialty palliative care training consults or co-manages patients to address palliative needs alongside clinicians who manage the underlying illness or (2) as primary palliative care in which the primary clinician (such as the internist, cardiologist, cardiology nurse, or HF specialist) caring for the patient with HF provides the essential palliative domains. In this paper, we describe the key domains of primary palliative care for patients with HF and offer some specific ways in which primary palliative care and specialist palliative care can be offered in this population. Although there is little research on HF primary palliative care, primary palliative care in HF offers a key opportunity to ensure that this population receives high-quality palliative care in spite of the growing numbers of patients with HF as well as the limited number of specialist palliative care providers.
Baba, Mika; Maeda, Isseki; Morita, Tatsuya; Hisanaga, Takayuki; Ishihara, Tatsuhiko; Iwashita, Tomoyuki; Kaneishi, Keisuke; Kawagoe, Shohei; Kuriyama, Toshiyuki; Maeda, Takashi; Mori, Ichiro; Nakajima, Nobuhisa; Nishi, Tomohiro; Sakurai, Hiroki; Shimoyama, Satofumi; Shinjo, Takuya; Shirayama, Hiroto; Yamada, Takeshi; Ono, Shigeki; Ozawa, Taketoshi; Yamamoto, Ryo; Tsuneto, Satoru
Accurate prognostic information in palliative care settings is needed for patients to make decisions and set goals and priorities. The Prognosis Palliative Care Study (PiPS) predictor models were presented in 2011, but have not yet been fully validated by other research teams. The primary aim of this study is to examine the accuracy and to validate the modified PiPS (using physician-proxy ratings of mental status instead of patient interviews) in three palliative care settings, namely palliative care units, hospital-based palliative care teams, and home-based palliative care services. This multicenter prospective cohort study was conducted in 58 palliative care services including 16 palliative care units, 19 hospital-based palliative care teams, and 23 home-based palliative care services in Japan from September 2012 through April 2014. A total of 2426 subjects were recruited. For reasons including lack of followup and missing variables (primarily blood examination data), we obtained analyzable data from 2212 and 1257 patients for the modified PiPS-A and PiPS-B, respectively. In all palliative care settings, both the modified PiPS-A and PiPS-B identified three risk groups with different survival rates (Ppalliative care units, hospital-based palliative care teams, and home-based palliative care services. Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Smith, C. B.; Nelson, J. E.; Berman, A. R.; Powell, C. A.; Fleischman, J.; Salazar-Schicchi, J.; Wisnivesky, J. P.
Background: Integration of palliative care with standard oncologic care improves quality of life and survival of lung cancer patients. We surveyed physicians to identify factors influencing their decisions for referral to palliative care. Methods: We provided a self-administered questionnaire to physicians caring for lung cancer patients at five medical centers. The questionnaire asked about practices and views with respect to palliative care referral. We used multiple regression analysis to identify predictors of low referral rates (palliative care consultation. Multivariate analysis, controlling for provider characteristics, found that low referral rates were associated with physicians’ concerns that palliative care referral would alarm patients and families [odds ratio (OR) 0.45, 95% confidence interval (CI) 0.21–0.98], while the belief that palliative care specialists have more time to discuss complex issues (OR 3.07, 95% CI 1.56–6.02) was associated with higher rates of referral. Conclusions: Although palliative care consultation is increasingly available and recommended throughout the trajectory of lung cancer, our data indicate it is underutilized. Understanding factors influencing decisions to refer can be used to improve integration of palliative care as part of lung cancer management. PMID:21804051
Full Text Available Paediatric palliative care is a holistic approach aimed at addressing the complex issues related to the care of children and families facing chronic life limiting illnesses. The needs of children are unique and often quite different from those of adults receiving palliative care. This review article outlines some of the salient features of paediatric palliative care which are relevant to all professionals caring for children with life limiting illnesses in their practice.
Putranto, Rudi; Mudjaddid, Endjad; Shatri, Hamzah; Adli, Mizanul; Martina, Diah
To summarize the current status of palliative care and the role of psychosomatic medicine in Indonesia. Palliative care is not a new issue in Indonesia, which has been improving palliative care since 1992 and developed a palliative care policy in 2007 that was launched by the Indonesian Ministry of Health. However, the progress has been slow and varied across the country. Currently, palliative care services are only available in a few major cities, where most of the facilities for cancer treatment are located. Psychosomatic medical doctors have advantages that contribute to palliative care because of their special training in communication skills to deal with patients from the standpoints of both mind and body. Palliative care services in Indonesia are established in some hospitals. Future work is needed to build capacity, advocate to stakeholders, create care models that provide services in the community, and to increase the palliative care workforce. Psychosomatic medicine plays an important role in palliative care services.
Harden, Karen; Price, Deborah; Duffy, Elizabeth; Galunas, Laura; Rodgers, Cheryl
Oncology nurses affect patient care at every point along the cancer journey. This creates the perfect opportunity to educate patients and caregivers about palliative care early and often throughout treatment. However, healthcare providers frequently do not have the knowledge and confidence to engage in meaningful conversations about palliative care. . The specific aims were to improve oncology nurses' palliative care knowledge, attitudes, and behaviors by providing a palliative care nursing education program. An additional aim was to increase the number of conversations with patients and families about palliative care. . This project had a pre-/post-test design to assess knowledge, attitudes, and behaviors at baseline and one month after implementation of an established education curriculum. The teaching strategy included one four-hour class for oncology RNs with topics about the definition of palliative care, pain and symptom management, and how to have palliative care conversations. . Results showed a statistically significant difference after the educational intervention for knowledge, attitudes, and behaviors. The number of conversations with patients and caregivers about palliative and end-of-life care increased significantly.
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Liberman, D B; Song, E; Radbill, L M; Pham, P K; Derrington, S F
Children with complex chronic medical conditions benefit from early introduction of palliative care services and advanced care planning for symptom management and to support quality of life and medical decision-making. This study evaluated whether introducing palliative care during primary care appointments (1) was feasible; (2) increased access and improved knowledge of palliative care; and (3) facilitated advanced care planning. Pilot study of a multi-modal intervention including targeted education for primary care providers (PCPs), an informational packet for families and presence of a palliative care team member in the outpatient clinic. PCPs completed pre- and post-surveys assessing experience, knowledge and comfort with palliative care. Enrolled families received an information packet; a subset also met a palliative care team member. All families were encouraged to make an appointment with the palliative care team, during which the team assessed palliative care needs and goals of care. Upon study completion, the investigators assessed family and PCP satisfaction and collected feedback on project feasibility. Twenty families were enrolled and received the information packet; 15 met a palliative care team member. Of the 17 participating families who were reached and completed a post-study survey, 11 families had never heard of palliative care and 13 were unaware that the palliative care team existed. Most families perceived palliative care information as 'very helpful' and 'very important'. All would recommend palliative care team services to others. Nine families followed up with the palliative care team, but none was prepared to complete an advanced care plan. PCPs reported lack of training in communicating bad news and conducting goals of care discussions. However, they felt increasingly comfortable introducing palliative care to families and supported program continuation. Initiating palliative care services in the outpatient primary care setting is
DIANE E. MEIER
.... It also defines palliative care and hospice, synthesizes studies of the outcomes of palliative care and hospice services, reviews variables predicting access to palliative care and hospice services...
Full Text Available Background. Palliative care in Slovene health care system isn’t developed. Comparison with other countries is not possible in many aspects. There is no complete or appropriately educated palliative care team in hospitals or in primary care. Palliative care departments in hospitals and nursing homes do not exist. Holistic palliative home care is offered only by Slovene association of hospice. The pressure on nursing homes and nursing service departments is getting stronger. Standards and norms for staff, for living conditions and medical equipment do not allow any more admittances of patients with the needs of high category of care in these institutions.Conclusions. Indirect indicators of level of palliative care (e.g. morphine consumption, palliative care departments, home care network, undergraduate education, specialisation and research put Slovenia at the bade of the Europe. Statistics predict aging of population and more patients are also living with consequences of progressive chronic diseases and cancer.In the new healthcare reform there is an opportunity for palliative care to get an equal place in healthcare system. With coordinated implementation of palliative care departments, consultant teams and mobile specialistic teams, palliative care could reach a better level of quality. At the same time, quality permanent education is essential.
Integrated palliative care is about professional networking rather than standardisation of care: A qualitative study with healthcare professionals in 19 integrated palliative care initiatives in five European countries.
den Herder-van der Eerden, Marlieke; van Wijngaarden, Jeroen; Payne, Sheila; Preston, Nancy; Linge-Dahl, Lisa; Radbruch, Lukas; Van Beek, Karen; Menten, Johan; Busa, Csilla; Csikos, Agnes; Vissers, Kris; van Gurp, Jelle; Hasselaar, Jeroen
Integrated palliative care aims at improving coordination of palliative care services around patients' anticipated needs. However, international comparisons of how integrated palliative care is implemented across four key domains of integrated care (content of care, patient flow, information logistics and availability of (human) resources and material) are lacking. To examine how integrated palliative care takes shape in practice across abovementioned key domains within several integrated palliative care initiatives in Europe. Qualitative group interview design. A total of 19 group interviews were conducted (2 in Belgium, 4 in the Netherlands, 4 in the United Kingdom, 4 in Germany and 5 in Hungary) with 142 healthcare professionals from several integrated palliative care initiatives in five European countries. The majority were nurses ( n = 66; 46%) and physicians ( n = 50; 35%). The dominant strategy for fostering integrated palliative care is building core teams of palliative care specialists and extended professional networks based on personal relationships, shared norms, values and mutual trust, rather than developing standardised information exchange and referral pathways. Providing integrated palliative care with healthcare professionals in the wider professional community appears difficult, as a shared proactive multidisciplinary palliative care approach is lacking, and healthcare professionals often do not know palliative care professionals or services. Achieving better palliative care integration into regular healthcare and convincing the wider professional community is a difficult task that will take time and effort. Enhancing standardisation of palliative care into education, referral pathways and guidelines and standardised information exchange may be necessary. External authority (policy makers, insurance companies and professional bodies) may be needed to support integrated palliative care practices across settings.
.... Proposed Collection: Pediatric Palliative Care Campaign Pilot Survey-0925-New-National Institute of Nursing... developed a Pediatric Palliative Care Campaign to address the communications challenges faced by health care providers who recommend and provide palliative care to pediatric populations. NINR is launching this effort...
Sugimura, Ayumi; Ando, Shoko; Tamakoshi, Koji
To investigate the association between the type of support provided by nurses for dyspnoea and palliative care practice in Japan, a cross-sectional questionnaire survey was conducted in 2015. Of the 535 questionnaires sent to nurses working at 22 designated cancer hospitals, 344 were returned. The questionnaire assessed the demographic characteristics of the nurses, nursing support for dyspnoea, and palliative care practice measured by the 'Palliative care self-reported practices scale'. Multivariate analysis showed that the domains of palliative care practice influenced the provision of nursing support for patients with dyspnoea. In conclusion, palliative care practice is important for supporting patients with dyspnoea, and nurses should possess the requisite knowledge and skills to deliver this care appropriately.
Connor, Stephen R; Gwyther, Elizabeth
The Worldwide Hospice Palliative Care Alliance (WHPCA) is an international non-governmental organization registered as a charity in England and Wales that was established in 2008 following a series of international gatherings that highlighted the important need for palliative care to be included in global policy and health planning. The vision of the WHPCA is a world with universal access to hospice and palliative care. Its mission is to foster, promote and influence the delivery of affordable, quality palliative care. This article describes the evolution of the WHPCA and what it has been able to accomplish in the eight years since its formation. These accomplishments include effective advocacy with United Nations bodies, acceptance as a non-governmental organization in official relations with the World Health Organization and the UN Economic and Social Council, publication of many position papers on critical aspects of palliative care, publication of the Global Atlas of Palliative Care at the End of Life, development of toolkits for palliative care development, publication of the international edition of ehospice, and management of World Hospice and Palliative Care Day each year. Some of the many challenges to the growth and development of palliative care globally are described along with future plans. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Ismaile, Samantha; Alshehri, Hanan H; Househ, Mowafa
The aim of this study was to evaluate nursing undergraduate students' knowledge with regard to palliative care in Saudi Arabia. A quantitative descriptive research study was conducted by the use of validated tool. A total of 204 students were included in the study. There is little evidence in Saudi Arabia to demonstrate if nursing undergraduates receives education on palliative care. The results indicate that 57.9% of the nursing undergraduates had received educational sessions and 42.1% of nursing undergraduates did not. In conclusion, palliative care nursing education is crucial to improve quality of patient care in nursing practices. It is recommended that a palliative care education should be integrated within the nursing programme courses. Hence, in order to improve students' knowledge of palliative care, course content should cover the principles of palliative care as a part of any nursing bachelor programme.
Lilley, Elizabeth J; Cooper, Zara; Schwarze, Margaret L; Mosenthal, Anne C
Given the acute and often life-limiting nature of surgical illness, as well as the potential for treatment to induce further suffering, surgical patients have considerable palliative care needs. Yet, these patients are less likely to receive palliative care than their medical counterparts and palliative care consultations often occur when death is imminent, reflecting poor quality end-of-life care. Surgical patients would likely benefit from early palliative care delivered alongside surgical treatment to promote goal-concordant decision making and to improve patients' physical, emotional, social, and spiritual well-being and quality of life. To date, evidence to support the role of palliative care in surgical practice is sparse and palliative care research in surgery is encumbered by methodological challenges and entrenched cultural norms that impede appropriate provision of palliative care. The objective of this article was to describe the existing science of palliative care in surgery within three priority areas and expose specific gaps within the field. We propose a research agenda to address these gaps and provide a road map for future investigation.
Irwin, Scott A; Ferris, Frank D
The need for psychiatrists to work with patients and families living with chronic life-threatening illnesses has never been greater. Further, psychiatrists may find exciting work within the relatively new field of palliative care, which is devoted to the prevention and relief of all suffering. Increasingly, individuals are living longer with multiple issues that cause suffering, interfere with their lives, and often lead to psychosocial sequelae. To ensure state-of-the-art care for patients and families throughout an illness and any ensuing bereavement period, many experienced psychiatrists are needed as consultants to, and as members of, interdisciplinary palliative care teams. This need presents limitless opportunities for psychiatrists to care for patients, provide education, and engage in research. The potential to make a difference is great.
Ayda Gan Nambayan
Ayda G. Nambayan, PhD, RN is the Training Consultant for The Ruth Foundation for Palliative and Hospice Care. Prior to this, she held various positions as a Consultant for Advanced Education and Training at Makati Medical Center, Philippines; a curriculum and distance learning developer for www.Cure4Kids.org, the educational website of the International Outreach Program of St. Jude Children's Research Hospital in Memphis, TN. In 2002, she retired from a faculty position from the University of...
Steen, J.T. van der; Radbruch, L.; Boer, M.E. de; Jünger, S.; Hughes, J.C.; Larkin, P.; Gove, D.; Francke, A.L.; Koopmans, R.T.C.M.; Firth, P.; Volicer, L.; Hertogh, C.M.P.M.
Background: People with dementia may benefit from palliative care which specifically addresses the needs of patients and families affected by this life-limiting disease. On behalf of the European Association for Palliative Care (EAPC), we recently performed a Delphi study to define domains for palliative care in dementia and to provide recommendations for optimal care. An international panel of experts in palliative care, dementia care or both, achieved consensus on almost all domains and rec...
Full Text Available ... 61,267 views 5:21 Last Days: HammondCare's Palliative Care Home Support program featured on ABC NSW 7.30 - Duration: 22:27. HammondCare 21,098 views 22:27 Pediatric Palliative Care and Support at Nemours/Alfred I. duPont ...
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This thesis is about improving aspects of palliative care for children, and covers three different areas of quality of care. First of all, palliative care should be anticipating. To be able to deliver this anticipating care, caregivers should know what to expect. The first two chapters of the thesis
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Full Text Available ... 11,251 views 10:35 Last Days: HammondCare's Palliative Care Home Support program featured on ABC NSW 7.30 - Duration: 22:27. HammondCare 19,064 views 22:27 The Ugly Truth of Pediatric ... views 4:24 Pediatric Palliative Care and Support at Nemours/Alfred I. duPont Hospital ...
Warth, Marco; Keßler, Jens; Hillecke, Thomas K; Bardenheuer, Hubert J
Music therapy has been used successfully for over 30 years as part of palliative care programs for severely ill patients. There is nonetheless a lack of high-quality studies that would enable an evidence-based evaluation of its psychological and physiological effects. In a randomized controlled trial, 84 hospitalized patients in palliative care were assigned to one of two treatment arms--music therapy and control. The music therapy intervention consisted of two sessions of live music-based relaxation exercises; the patients in the control group listened to a verbal relaxation exercise. The primary endpoints were self-ratings of relaxation, well-being, and acute pain, assessed using visual analog scales. Heart rate variability and health-related quality of life were considered as secondary outcomes. The primary data analysis was performed according to the intention-to-treat principle. Analyses of covariance revealed that music therapy was more effective than the control treatment at promoting relaxation (F = 13.7; p Music therapy did not differ from control treatment with respect to pain reduction (F = 0.4; p = 0.53), but it led to a significantly greater reduction in the fatigue score on the quality-of-life scale (F = 4.74; p = 0.03). Music therapy is an effective treatment with a low dropout rate for the promotion of relaxation and well-being in terminally ill persons undergoing palliative care.
Zieschang, T; Oster, P; Pfisterer, M; Schneider, N
Patients with dementia are an important target group for palliative care since particularly in advanced stages and at the end of life they often have complex health care and psychosocial needs. However, people with dementia have inappropriate access to palliative care. So far, palliative care focuses on cancer patients. Among other reasons, this is due to the different illness trajectories: while in cancer a relatively clear terminal phase is typical, in dementia functional decline is gradual without a clear terminal phase, making advanced care planning more difficult. Good communication among health care providers and with the patient and his/her family is essential to avoid unnecessary or even harmful interventions at the end of life (e.g., inserting a percutaneous endoscopic gastrostomy, PEG). To maintain the patient's autonomy and to deliver health care according to the individual preferences, it is important to appropriately inform the patient and the family at an early stage about the disease and problems that may occur. In this context, advanced directives can be helpful.
Full Text Available Introduction: Annually more than 27,000 persons die of cancer in the Czech Republic and the overall incidence of malignancies is still increasing. These data shows the need for affordable and good follow-up care especially for patients without any cancer treatment due to irreversible progression of tumor. Currently the outpatient palliative cancer care gets more into the forefront. Prerequisite for a well working outpatient palliative care is cooperation with general practitioners and home health care agencies. The purpose of the so called program of palliative cancer care is to guide a patient in palliative cancer care and to improve the cooperation among health care providers. Methods: During the period from January 2008 to October 2010 we evaluated in patient without any oncology treatment due to irreversible progression of tumor. Results: In palliative outpatient clinic we treated 446 patients, 119 of them received home care services with average length of 27.8 days. 77 patients died at home, 51 in health facilities and 41 in inpatient hospice care. Conclusion: We present pilot study focusing on outpatient palliative cancer care which shows the real benefit from early indication of palliative cancer care. This type of care allows patients to stay as long as possible at home among their close relatives.
Full Text Available Introduction: Montenegro, a newly independent Balkan state with a population of 650,000, has a health care reform programme supported by the World Bank. This paper describes planning for integrated elderly and palliative care. Description: The current service is provided only through a single long-stay hospital, which has institutionalised patients and limited facilities. Broad estimates were made of current financial expenditures on elderly care. A consultation was undertaken with stakeholders to propose an integrated system linking primary and secondary health care with social care; supporting people to live, and die well, at home; developing local nursing homes for people with higher dependency; creating specialised elderly-care services within hospitals; and providing good end-of-life care for all who need it. Effectiveness may be measured by monitoring patient and carers’ perceptions of the care experience. Discussion: Changes in provision of elderly care may be achieved through redirection of existing resources, but the health and social care services also need to enhance elderly care budgets. The challenges for implementation include management skills, engaging professionals and political commitment. Conclusion: Middle-income countries such as Montenegro can develop elderly and palliative care services through redirection of existing finance if accompanied by new service objectives, staff skills and integrated management.
Strömgren, Annette S; Goldschmidt, Dorthe; Groenvold, Mogens
BACKGROUND: Research in palliative care is considered difficult due to the poor health of patients. However, patient-provided data are essential for a thorough description of patient symptomatology and for the evaluation of care. METHODS: The authors examined the feasibility of a questionnaire......-based study using the European Organization for Research and Treatment of Cancer quality-of-life instrument EORTC QLQ-C30, the Edmonton Symptom Assessment System (ESAS), and the Hospital Anxiety and Depression Scale (HADS) in cancer patients who were receiving palliative care. This report describes...... the symptomatology of participating patients and examines differences in symptomatology between patients in three palliative care functions: inpatient, outpatient, and palliative home care. RESULTS: Of 267 eligible patients who were referred to a department of palliative medicine, initial self...
Mun, Eluned; Umbarger, Lillian; Ceria-Ulep, Clementina; Nakatsuka, Craig
Palliative Care Teams have been shown to be instrumental in the early identification of multiple aspects of advanced care planning. Despite an increased number of services to meet the rising consultation demand, it is conceivable that the numbers of palliative care consultations generated from an ICU alone could become overwhelming for an existing palliative care team. Improve end-of-life care in the ICU by incorporating basic palliative care processes into the daily routine ICU workflow, thereby reserving the palliative care team for refractory situations. A structured, palliative care, quality-improvement program was implemented and evaluated in the ICU at Kaiser Permanente Medical Center in Hawaii. This included selecting trigger criteria, a care model, forming guidelines, and developing evaluation criteria. These included the early identification of the multiple features of advanced care planning, numbers of proactive ICU and palliative care family meetings, and changes in code status and treatment upon completion of either meeting. Early identification of Goals-of-Care, advance directives, and code status by the ICU staff led to a proactive ICU family meeting with resultant increases in changes in code status and treatment. The numbers of palliative care consultations also rose, but not significantly. Palliative care processes could be incorporated into a daily ICU workflow allowing for integration of aspects of advanced care planning to be identified in a systematic and proactive manner. This reserved the palliative care team for situations when palliative care efforts performed by the ICU staff were ineffective.
Murphy, Edel; Froggatt, Katherine Alison; Connolly, S; O'Shea, Eamonn; Sampson, Elisabeth; Casey, Dympna; Devane, Declan
Background Dementia is a chronic, progressive and ultimately fatal neurodegenerative disease. Advanced dementia is characterised by profound cognitive impairment, inability to communicate verbally and complete functional dependence. Usual care of people with advanced dementia is not underpinned universally by a palliative approach. Palliative care has focused traditionally on care of people with cancer but for more than a decade, there have been increased calls worldwide to extend palliative ...
Hurst, Samia A; Mauron, Alex
The ethical underpinnings of palliative care and those of voluntary euthanasia and assisted suicide (VE/AS) are often viewed as opposites. In this article, we review the values held in common by the euthanasia legalization movement and palliative care providers. Outlining this common ground serves to define, with greater clarity, the issues on which differences do exist, and ways in which some open questions, which are as yet unresolved, could be approached. Open discussion between VE/AS legalization advocates and palliative care providers is important to address these open questions seriously, and to enrich the care of terminally ill patients by giving members of both groups access to each other's experience.
Cristina Anca COLIBABA
Full Text Available This article outlines learners’ difficulty in acquiring and practicing palliative medical skills necessary in medical procedures due to limited technologically state-of-the art language learning support to facilitate optimum access for medical students to the European medicine sector and offers as a potential solution the Palliative Care MOOC project (2014-1-RO01-KA203-002940. The project is co-financed by the European Union under the Erasmus+ program and coordinated by the Gr.T.Popa University of Medicine and Pharmacy Iasi, Romania. The article describes the project idea and main objectives, highlighting its focus and activities on developing innovative guidelines on standardized fundamental medical procedures, as well as clinical language and communication skills. The project thus helps not only medical lecturers and language teachers who teach medical students, but also the medical students themselves and the lay people involved in causalities.
Schuster, M; Ferner, M; Bodenstein, M; Laufenberg-Feldmann, R
Involvement of palliative care is so far not common practice for critically ill patients on surgical intensive care units (ICUs) in Germany. The objectives of palliative care concepts are improvement of patient quality of life by relief of disease-related symptoms using an interdisciplinary approach and support of patients and their relatives considering their current physical, psychological, social and spiritual needs. The need for palliative care can be identified via defined screening criteria. Integration of palliative care can either be realized using a consultative model which focusses on involvement of palliative care consultants or an integrative model which embeds palliative care principles into the routine daily practice by the ICU team. Early integration of palliative care in terms of advance care planning (ACP) can lead to an increase in goals of care discussions and quality of life as well as a decrease of mortality and length of stay on the ICU. Moreover, stress reactions of relatives and ICU staff can be reduced and higher satisfaction with therapy can be achieved. The core of goal of care discussions is professional and well-structured communication between patients, relatives and staff. Consideration of palliative care principles by model-based integration into ICU practice can improve complex intensive care courses of disease in a productive but dignified way without neglecting curative attempts.
Goldsmith, Joy; Ferrell, Betty; Wittenberg-Lyles, Elaine; Ragan, Sandra L
Oncology nurses consistently exhibit distress when communicating about end-of-life topics with patients and families. Poor communication experiences and processes correlate with emotional distress, moral distress, and work-related stress. The National Consensus Project (NCP) for Quality Palliative Care developed clinical practice guidelines to establish quality standards for the practice of palliative care. NCP's guidelines are expressly intended as an interdisciplinary document and are representative of the inherent interdisciplinary nature of palliative care. Communication's value to palliative and oncology nursing is unique because those two specialties include a high frequency of challenging interactions for patients, families, and healthcare professionals. The COMFORT communication curriculum, a holistic model for narrative clinical communication in practice developed for use in early palliative care, is posed as a resource for oncology nurses with a series of practice case examples presented against the backdrop of NCP's eight domains of quality palliative care.
Borgsteede, S.D.; Deliens, L.; Francke, A.L.; Stalman, W.A.B.; Willems, D.L.; Eijk, T.T.M. van; Wal, G. van der
Object of the study: Epidemiological research into palliative care faces the problem of defining an adequate research population. Subjects in studies are alternately defined as patients receiving 'palliative care' , 'palliative treatment' or 'end of life care'. So far, it is not known how
Lancaster, Harriet; Finlay, Ilora; Downman, Maxwell; Dumas, James
Some failures in end-of-life care have been attributed to inconsistent provision of palliative care across England. We aimed to explore the variation in commissioning of services by Clinical Commissioning Groups (CCGs) using a data collection exercise. We sent a Freedom of Information request in the form of an open questionnaire to all 209 CCGs in England to assess their commissioning of palliative and end-of-life care services, mainly focused on the provision of specialist palliative care services. 29 CCGs provided information about the number of patients with some form of palliative care needs in their population. For specialist palliative care services, CCGs allocated budgets ranging from £51.83 to £2329.19 per patient per annum. 163 CCGs (77.90%) currently commission 7-day admission to their specialist palliative care beds. 82.84% of CCGs commission 7-day specialist palliative care services in patients' own homes and out-of-hours services rely heavily on hospice provision. 64 CCGs (31.37%) commission pain control teams, the majority of whom only operate in regular working hours. 68.14% of CCGs reported commissioning palliative care education of any sort for healthcare professionals and 44.85% of CCGs had no plans to update or review their palliative care services. The most important finding from this exercise is that the information CCGs hold about their population and services is not standardised. However, information based on data that are more objective, for example, population and total budget for palliative care, demonstrate wide variations in commissioning. 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/.
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Blacquiere, Dylan; Bhimji, Khadija; Meggison, Hilary; Sinclair, John; Sharma, Michael
The determinants of satisfaction for families of acute stroke patients receiving palliative care have not been extensively studied. We surveyed families to determine how they perceived palliative care after stroke. Families of patients palliated after ischemic stroke, intracerebral, or subarachnoid hemorrhage were approached. Four weeks after the patient's death, families were administered the After-Death Bereaved Family Member Interview to determine satisfaction with the care provided. Fifteen families participated. Families were most satisfied with participation in decision making and least satisfied with attention to emotional needs. In stroke-specific domains, families had less satisfaction with artificial feeding, hydration, and communication. Overall satisfaction was high (9.04 out of 10). Families of patients receiving palliative care at our institution showed generally high satisfaction with palliation after stroke; specific domains were identified for improvement. Further study in larger populations is required.
Any service improvement project requires planning, action and evaluation. Using a recognised quality improvement framework can offer a structured approach to implementing and assessing changes to patient care. This article describes how use of the Deming Cycle has helped to identify nurses\\' learning needs.
Desa, Veena; Danjoux, Cyril; Matyas, Yvette; Fitch, Margaret; Husain, Amna; Horvath, Nina; Myers, Jeff; Clemons, Mark; Hux, Janet E; Barnes, Elizabeth A
The scale and complexity of palliative care increasingly demands that researchers move beyond their own discipline and explore interdisciplinary collaboration. At a Palliative Care Research Retreat held in January 2006 at the Toronto Sunnybrook Regional Cancer Centre, researchers from multiple care settings with the center and from other Toronto hospitals came together with the vision of becoming Canadian leaders in palliative care research. As a result of this retreat, five interdisciplinary groups were formed to pursue research in the areas of pain and symptom management, access to services, translational research, education, and communication. An overview of the retreat and direction of research for each group is provided.
Cássia Regina de Paula Paz
Full Text Available Objective.Assess the need for incorporation of palliative care in primary health care (PHC through the characterization of users eligible for this type of care, enrolled in a program for devices dispensing. Methods. Descriptive study of case series conducted in 14 health units in São Paulo (Brazil in 2012. It was included medical records of those enrolled in a program for users with urinary and fecal incontinence, and it was applied Karnofsky Performance Scale Index (KPS to identify the indication of palliative care. Results. 141 of the 160 selected medical records had KPS information. Most cases (98.3%, 138/141 had performance below 70% and, therefore, patients were eligible for palliative care. The most frequent pathologies was related to chronic degenerative diseases (46.3%, followed by disorders related to quality of care during pregnancy and childbirth (24.38%. Conclusion. It is necessary to include palliative care in PHC in order to provide comprehensive, shared and humanized care to patients who need this.
de Paula Paz, Cássia Regina; Reis Pessalacia, Juliana Dias; Campos Pavone Zoboli, Elma Lourdes; Ludugério de Souza, Hieda; Ferreira Granja, Gabriela; Cabral Schveitzer, Mariana
Assess the need for incorporation of palliative care in primary health care (PHC) through the characterization of users eligible for this type of care, enrolled in a program for devices dispensing. Descriptive study of case series conducted in 14 health units in São Paulo (Brazil) in 2012. It was included medical records of those enrolled in a program for users with urinary and fecal incontinence, and it was applied Karnofsky Performance Scale Index (KPS) to identify the indication of palliative care. 141 of the 160 selected medical records had KPS information. Most cases (98.3%, 138/141) had performance below 70% and, therefore, patients were eligible for palliative care. The most frequent pathologies was related to chronic degenerative diseases (46.3%), followed by disorders related to quality of care during pregnancy and childbirth (24.38%). It is necessary to include palliative care in PHC in order to provide comprehensive, shared and humanized care to patients who need this.
Kawaguchi, S; Mirza, R; Nissim, R; Ridley, J
Internal medicine residents are frequently called upon to provide palliative care to hospitalized patients, but report feeling unprepared to do so effectively. Curricular development to enhance residents' palliative care skills and competencies requires an understanding of current beliefs, attitudes and learning priorities. We conducted a qualitative study consisting of semi-structured interviews with ten internal medicine residents to explore their understanding of and experiences with palliative care. All of the residents interviewed had a sound theoretical understanding of palliative care, but faced many challenges in being able to provide care in practice. The challenges described by residents were system-related, patient-related and provider-related. They identified several priority areas for further learning, and discussed ways in which their current education in palliative care could be enhanced. Our findings provide important insights to guide curricular development for internal medicine trainees. The top five learning priorities in palliative care that residents identified in our study were: 1) knowing how and when to initiate a palliative approach, 2) improving communication skills, 3) improving symptom management skills, 4) identifying available resources, and 5) understanding the importance of palliative care. Residents felt that their education in palliative care could be improved by having a mandatory rotation in palliative care, more frequent didactic teaching sessions, more case-based teaching from palliative care providers, opportunities to be directly observed, and increased support from palliative care providers after-hours.
Claessen, Susanne J J; Francke, Anneke L; Sixma, Herman J; de Veer, Anke J E; Deliens, Luc
The Consumer Quality Index Palliative Care (CQ-index PC) is a structured questionnaire for measuring the quality of palliative care from the perspective of care users. CQ-indices assess which care aspects need quality improvement by relating answers about actual care experiences to answers about the importance of certain aspects of care. To improve the chance that the new instrument has good content validity, a literature study and individual and group discussions were performed, and a steering committee was consulted to establish the instrument's face and content validity. The questionnaire was administered to patients with a life expectancy of 6 months or less and/or who were receiving palliative treatment. Descriptive analyses were carried out on the items about actual care experiences and the importance of care aspects, and on 'need for improvement' scores. 15 care organisations participated. 133 patients met the inclusion criteria (net response n=85). Patients considered the following aspects the most important: 'offering help in good time in acute situations', 'caregivers having the necessary expertise' and 'caregivers taking the patient seriously'. The three care aspects with the highest 'need for improvement' scores were: 'support when the patient feels depressed', 'support when the patient is anxious' and 'support when the patient has shortness of breath'. The CQ-index PC provides opportunities for care organisations to assess which care aspects have the highest priority for quality improvement within their organisation. Further research is needed to assess whether the instrument has enough discriminative power to assess differences between organisations.
Selman, Lucy Ellen; Brighton, Lisa J; Hawkins, Amy; McDonald, Christine; O'Brien, Suzanne; Robinson, Vicky; Khan, Shaheen A; George, Rob; Ramsenthaler, Christine; Higginson, Irene J; Koffman, Jonathan
As most end-of-life care is provided by health care providers who are generalists rather than specialists in palliative care, effective communication skills training for generalists is essential. To determine the effect of communication training interventions for generalist palliative care providers on patient-reported outcomes and trainee behaviors. Systematic review from searches of 10 databases to December 2015 (MEDLINE, EMBASE, PsycINFO, ERIC, CINAHL, CENTRAL, Web of Science, ICTRP, CORDIS, and OpenGrey) plus hand searching. Randomized controlled trials of training interventions intended to enhance generalists' communication skills in end-of-life care were included. Two authors independently assessed eligibility after screening, extracted data, and graded quality. Data were pooled for meta-analysis using a random-effects model. PRISMA guidelines were followed. Nineteen of 11,441 articles were eligible, representing 14 trials. Eleven were included in meta-analyses (patients n = 3144, trainees n = 791). Meta-analysis showed no effect on patient outcomes (standardized mean difference [SMD] = 0.10, 95% CI -0.05 to 0.24) and high levels of heterogeneity (chi-square = 21.32, degrees of freedom [df] = 7, P = 0.003; I(2) = 67%). The effect on trainee behaviors in simulated interactions (SMD = 0.50, 95% CI 0.19-0.81) was greater than in real patient interactions (SMD = 0.21, 95% CI -0.01 to 0.43) with moderate heterogeneity (chi-square = 8.90, df = 5, P = 0.11; I(2) = 44%; chi-square = 5.96, df = 3, P = 0.11; I(2) = 50%, respectively). Two interventions with medium effects on showing empathy in real patient interactions included personalized feedback on recorded interactions. The effect of communication skills training for generalists on patient-reported outcomes remains unclear. Training can improve clinicians' ability to show empathy and discuss emotions, at least in simulated consultations. Personalized feedback on recorded patient
Karam, Chafic Y; Paganoni, Sabrina; Joyce, Nanette; Carter, Gregory T; Bedlack, Richard
As palliative care physicians become increasingly involved in the care of patients with amyotrophic lateral sclerosis (ALS), they will be asked to provide guidance regarding the use of supplements, diet, exercise, and other common preventive medicine interventions. Moreover, palliative care physicians have a crucial role assisting patients with ALS in addressing health care decisions to maximize quality of life and cope with a rapidly disabling disease. It is therefore important for palliative care physicians to be familiar with commonly encountered palliative care issues in ALS. This article provides an evidenced-based review of palliative care options not usually addressed in national and international ALS guidelines. © The Author(s) 2014.
Roberts, Della; Gaspard, Gina
Dementia is a progressive, life-limiting illness. People with the condition who move into a care home deserve palliative care. This article discusses an interprofessional pilot workshop for direct care providers held in a care home in British Columbia, Canada. The workshop aimed to incorporate a palliative approach into dementia care for residents. Workshop development, teaching strategies, evaluation and outcomes are shared. The four-hour workshop was structured to promote critical reflection and challenge participants to consider that people with dementia and their families need palliative care much earlier than during the last days of life. Commitment to change statements gathered as part of the workshop indicated that participation increased knowledge, skill and confidence to incorporate a palliative approach into care for people with advanced dementia and their families.
Richards, Claire A; Starks, Helene; O'Connor, M Rebecca; Bourget, Erica; Lindhorst, Taryn; Hays, Ross; Doorenbos, Ardith Z
Parents of children admitted to neonatal and pediatric intensive care units (ICUs) are at increased risk of experiencing acute and post-traumatic stress disorder. The integration of palliative care may improve child and family outcomes, yet there remains a lack of information about indicators for specialty-level palliative care involvement in this setting. To describe neonatal and pediatric critical care physician perspectives on indicators for when and why to involve palliative care consultants. Semistructured interviews were conducted with 22 attending physicians from neonatal, pediatric, and cardiothoracic ICUs in a single quaternary care pediatric hospital. Transcribed interviews were analyzed using content and thematic analyses. We identified 2 themes related to the indicators for involving palliative care consultants: (1) palliative care expertise including support and bridging communication and (2) organizational factors influencing communication including competing priorities and fragmentation of care. Palliative care was most beneficial for families at risk of experiencing communication problems that resulted from organizational factors, including those with long lengths of stay and medical complexity. The ability of palliative care consultants to bridge communication was limited by some of these same organizational factors. Physicians valued the involvement of palliative care consultants when they improved efficiency and promoted harmony. Given the increasing number of children with complex chronic conditions, it is important to support the capacity of ICU clinical teams to provide primary palliative care. We suggest comprehensive system changes and critical care physician training to include topics related to chronic illness and disability.
Carroll, Thomas; Weisbrod, Neal; O'Connor, Alec; Quill, Timothy
The demand for palliative services is outpacing the availability of specialist palliative care clinicians. One strategy to fill this gap is to improve "primary palliative care" skills and knowledge of all clinicians who care for seriously ill patients. Previous educational efforts have shown mixed results, and one possible explanation is unrecognized discordance of educational goals between those offering education and potential primary palliative care learners. The article describes the results and feasibility of a needs assessment survey comparing interest in palliative care education topics and settings among both palliative care specialists (PCS) and nonpalliative care specialists (NPCS). This is the first attempt to measure the perceived importance of primary palliative care topics and preferences about learning settings from the perspectives of both NPCS and PCS. The results suggest substantial areas of both concordant and discordant opinions with respect to educational topics and learning settings. Such data are essential to guide primary palliative care educational efforts. Future work will be needed to determine whether these results are consistent across diverse health systems and what variables influence educational preferences.
Atayee, Rabia Samady; Best, Brookie M; Daniels, Charles E
The roles of a pharmacist in hospice and inpatient palliative care settings have been described. However, no reports of a palliative care pharmacist in an ambulatory care setting have been published. Our objective was to establish a model for incorporating an outpatient clinical pharmacist as part of a multidisciplinary palliative care team. A palliative care pharmacist based out of a retail pharmacy was incorporated as part of a consultative ambulatory palliative care service (known as the Doris A. Howell Service) at the University of California, San Diego Moores Cancer Center. The pharmacist completed all legal requirements to prescribe under a collaborative practice agreement in California (including National Provider Identifier [NPI] and US Drug Enforcement Agency [DEA] US Drug Enforcement Agency (DEA) registration). From November 2006 through August 2007, the palliative care pharmacist consulted 29 new patients (the average age of patients was 49; range, 20-78 years) who had 114 clinic visits. The most common reason for referral to the palliative care pharmacist was for pain management (27/29; 93%). During the 114 patient clinic visits, 98% (112/114) of the palliative care pharmacist medication recommendations were accepted by the primary care oncologist. Physicians completed a satisfaction survey and reported that the top three useful activities of the Howell Service were: additional time spent with patients without physician present (90.9%), pain and symptom management (81.8%), and psychosocial support (72.7%). This is the first report of a palliative care pharmacist in a retail-based ambulatory care setting. Initial results demonstrate the success of this pilot program.
Coats, Heather; Paganelli, Tia; Starks, Helene; Lindhorst, Taryn; Starks Acosta, Anne; Mauksch, Larry; Doorenbos, Ardith
There is a known shortage of trained palliative care professionals, and an even greater shortage of professionals who have been trained through interprofessional curricula. As part of an institutional Palliative Care Training Center grant, a core team of interprofessional palliative care academic faculty and staff completed a state-wide palliative care educational assessment to determine the needs for an interprofessional palliative care training program. The purpose of this article is to describe the process and results of our community needs assessment of interprofessional palliative care educational needs in Washington state. We approached the needs assessment through a cross-sectional descriptive design by using mixed-method inquiry. Each phase incorporated a variety of settings and subjects. The assessment incorporated multiple phases with diverse methodological approaches: a preparatory phase-identifying key informants; Phase I-key informant interviews; Phase II-survey; and Phase III-steering committee endorsement. The multiple phases of the needs assessment helped create a conceptual framework for the Palliative Care Training Center and developed an interprofessional palliative care curriculum. The input from key informants at multiple phases also allowed us to define priority needs and to refine an interprofessional palliative care curriculum. This curriculum will provide an interprofessional palliative care educational program that crosses disciplinary boundaries to integrate knowledge that is beneficial for all palliative care clinicians. The input from a range of palliative care clinicians and professionals at every phase of the needs assessment was critical for creating an interprofessional palliative care curriculum.
Aldridge, Melissa D; Hasselaar, Jeroen; Garralda, Eduardo; van der Eerden, Marlieke; Stevenson, David; McKendrick, Karen; Centeno, Carlos; Meier, Diane E
Early integration of palliative care into the management of patients with serious disease has the potential to both improve quality of life of patients and families and reduce healthcare costs. Despite these benefits, significant barriers exist in the United States to the early integration of palliative care in the disease trajectory of individuals with serious illness. To provide an overview of the barriers to more widespread palliative care integration in the United States. A literature review using PubMed from 2005 to March 2015 augmented by primary data collected from 405 hospitals included in the Center to Advance Palliative Care's National Palliative Care Registry for years 2012 and 2013. We use the World Health Organization's Public Health Strategy for Palliative Care as a framework for analyzing barriers to palliative care integration. We identified key barriers to palliative care integration across three World Health Organization domains: (1) education domain: lack of adequate education/training and perception of palliative care as end-of-life care; (2) implementation domain: inadequate size of palliative medicine-trained workforce, challenge of identifying patients appropriate for palliative care referral, and need for culture change across settings; (3) policy domain: fragmented healthcare system, need for greater funding for research, lack of adequate reimbursement for palliative care, and regulatory barriers. We describe the key policy and educational opportunities in the United States to address and potentially overcome the barriers to greater integration of palliative care into the healthcare of Americans with serious illness. © The Author(s) 2015.
Julião, Miguel; Barbosa, António
Depression is the most common mental health problem in palliative care, yet it's widely misunderstood, underdiagnosed, undertreated and considered a complex medical task. Psychological distress is a major cause of suffering among patients and families and it's highly correlated with reduced quality of life and amplification of pain. Terminally-ill individuals who suffer from depression are also at high risk of suicide and desire for a hastened death. Every patient receiving palliative care should receive a complete personal and familial psychiatric history, with risk factors, as well as the typical signs and symptoms in the terminal disease. There are two different approaches to assess depression in palliative care: Categorial vs Dimensional The Hospital Anxiety and Depression Scale (HADS) is the most used assessment method for depression in advanced disease and it's validated to the Portuguese population. HADS overcomes the biggest problem when evaluating depression in the terminally-ill: the influence of somatic symptoms due to the underlying disease on the results of the depression scales. In this article we revise other approaches for the assessment of depression in advanced disease: single question vs two-item question; structured clinical interview and diagnostic criteria. Clinicians who care for terminally-ill patients must develop competences on the psychological area, developing state-of-the-art clinical skills that provide quality of life and comfort to patients and their families.
Wu, Hung-Lan; Volker, Deborah L
This article presents a discussion of the relevance of Humanistic Nursing Theory to hospice and palliative care nursing. The World Health Organization has characterized the need for expert, palliative and end-of-life care as a top priority for global health care. The specialty of hospice and palliative care nursing embraces a humanistic caring and holistic approach to patient care. As this resonates with Paterson and Zderad's Humanistic Nursing Theory, an understanding of hospice nurses' experiences can be investigated by application of relevant constructs in the theory. This article is based on Paterson and Zderad's publications and other theoretical and research articles and books focused on Humanistic Nursing Theory (1976-2009), and data from a phenomenological study of the lived experience of Taiwanese hospice nurses conducted in 2007. Theoretical concepts relevant to hospice and palliative nursing included moreness-choice, call-and-response, intersubjective transaction, uniqueness-otherness, being and doing and community. The philosophical perspectives of Humanistic Nursing Theory are relevant to the practice of hospice and palliative care nursing. By 'being with and doing with', hospice and palliative nurses can work with patients to achieve their final goals in the last phase of life. Use of core concepts from Humanistic Nursing Theory can provide a unifying language for planning care and describing interventions. Future research efforts in hospice and palliative nursing should define and evaluate these concepts for efficacy in practice settings. © 2011 Blackwell Publishing Ltd.
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van den Heuvel, Wim J. A.; Olaroiu, Marinela
Palliative care is directed to maintenance of quality of life and to prevent and to relief suffering of those with a life-threatening disease. Palliative care does not only concern the patient, but also the quality of life of family members and it deals with physical symptoms as well as with
Full Text Available ... Queue __count__/__total__ Find out why Close Pediatric Palliative Care: A Personal Story NINRnews Loading... Unsubscribe from NINRnews? ... patient—and her family. The story demonstrates how palliative care can positively influence a patient's and family's experience ...
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Conclusion: Life and work experience improve the accuracy of medical staff in providing hospice palliative care. A culture-based, case-oriented continuing education program and a timely revision of the Hospice Palliative Care Article are recommended to increase the consistency between the principle and the practice of hospice palliative care.
The purpose for this observational research was to understand how Can Support provides palliative care at home and analyze its strengths and weaknesses in various socioeconomic scenarios for future development...
Bélanger, Emmanuelle; Rodríguez, Charo; Groleau, Danielle; Légaré, France; MacDonald, Mary Ellen; Marchand, Robert
The participation of patients in making decisions about their care is especially important towards the end of life because palliative care decisions involve extensive uncertainty and are heavily influenced by personal values. Yet, there is a scarcity of studies directly observing clinical interactions between palliative patients and their health care providers. In this study, we aimed to understand how patient participation in palliative care decisions is constructed through discourse in a community hospital-based palliative care team. This qualitative study combined ethnographic observations of a palliative care team with discourse analysis. Eighteen palliative care patients with cancer diagnoses, six family physicians, and two nurses were involved in the study. Multiple interactions were observed between each patient and health care providers over the course of 1 year, for a total of 101 consultations, 24 of which were audio-recorded. The analysis consisted in looking for the interpretive repertoires (i.e., familiar lines of argument used to justify actions) that were used to justify patient participation in decision-making during clinical interactions, as well as exploring their implications for decision roles and end-of-life care. Patients and their health care providers seldom addressed their decision-making roles explicitly. Rather, they constructed patient participation in palliative care decisions in a covert manner. Four interpretive repertoires were used to justify patient participation: (1) exposing uncertainty, (2) co-constructing patient preferences, (3) affirming patient autonomy, and finally (4) upholding the authority of health care providers. The results demonstrate how patients and health care providers used these arguments to negotiate their respective roles in decision-making. In conclusion, patients and health care providers used a variety of interpretive repertoires to covertly negotiate their roles in decision-making, and to legitimize
Full Text Available The participation of patients in making decisions about their care is especially important towards the end of life because palliative care decisions involve extensive uncertainty and are heavily influenced by personal values. Yet, there is a scarcity of studies directly observing clinical interactions between palliative patients and their health care providers. In this study, we aimed to understand how patient participation in palliative care decisions is constructed through discourse in a community hospital-based palliative care team. This qualitative study combined ethnographic observations of a palliative care team with discourse analysis. Eighteen palliative care patients with cancer diagnoses, six family physicians, and two nurses were involved in the study. Multiple interactions were observed between each patient and health care providers over the course of 1 year, for a total of 101 consultations, 24 of which were audio-recorded. The analysis consisted in looking for the interpretive repertoires (i.e., familiar lines of argument used to justify actions that were used to justify patient participation in decision-making during clinical interactions, as well as exploring their implications for decision roles and end-of-life care. Patients and their health care providers seldom addressed their decision-making roles explicitly. Rather, they constructed patient participation in palliative care decisions in a covert manner. Four interpretive repertoires were used to justify patient participation: (1 exposing uncertainty, (2 co-constructing patient preferences, (3 affirming patient autonomy, and finally (4 upholding the authority of health care providers. The results demonstrate how patients and health care providers used these arguments to negotiate their respective roles in decision-making. In conclusion, patients and health care providers used a variety of interpretive repertoires to covertly negotiate their roles in decision-making, and to
Doorenbos, Ardith Z; Juntasopeepun, Phanida; Eaton, Linda H; Rue, Tessa; Hong, Elizabeth; Coenen, Amy
This study aimed to describe the nursing interventions that nurses in Thailand identify as most important in promoting dignified dying. This study used a cross-sectional descriptive design. A total of 247 Thai nurses completed a paper-and-pencil survey written in Thai. The survey included both demographic questions and palliative care interventions, listed with summative rating scales, from the International Classification for Nursing Practice (ICNP) catalogue Palliative Care for Dignified Dying. Descriptive statistics were used to analyze the data. The five most important nursing interventions to promote dignified dying, ranked by average importance rating, were (a) maintain dignity and privacy, (b) establish trust, (c) manage pain, (d) establish rapport, and (e) manage dyspnea. This research identified the palliative care nursing interventions considered most important by nurses in Thailand to promote dignified dying. The ICNP catalogue Palliative Care for Dignified Dying can be used for planning and managing palliative nursing care in Thailand.
Knapp, Caprice; Madden, Vanessa; Button, Daniel; Brown, Rebecca; Hastie, Barbara
Children with life-threatening illnesses and their families may face physical, emotional, psychosocial, and spiritual challenges throughout the children's course of illness. Pediatric palliative care is designed to meet such challenges. Given the psychosocial and emotional needs of children and their families it is clear that psychiatrists can, and do, play a role in delivering pediatric palliative care. In this article the partnership between pediatric palliative care and psychiatry is explored. The authors present an overview of pediatric palliative care followed by a summary of some of the roles for psychiatry. Two innovative pediatric palliative care programs that psychiatrists may or may not be aware of are described. Finally, some challenges that are faced in further developing this partnership and suggestions for future research are discussed. Copyright © 2011 Elsevier Inc. All rights reserved.
Guimarães, Tuani Magalhães; Silva, Liliane Faria da; Santo, Fátima Helena Espírito; Moraes, Juliana Rezende Montenegro Medeiros de; Pacheco, Sandra Teixeira de Araújo
To identify and understand the view of students regarding palliative care in paediatric oncology during a graduate programme. Exploratory research with a qualitative approach conducted in a school of nursing in Rio de Janeiro. Data were collected from September to November 2014, through semi-structured interviews with 20 students enrolled in the last period of a graduate programme. The data were subjected to thematic analysis. The results produced two thematic units: the (un)preparedness of nursing students regarding palliative care in paediatric oncology and how the subject of palliative care in paediatric oncology is approached in the graduate programme. The students mentioned difficulties in providing this care and their lack of exposure to the topic during their graduate studies. They stated strategies to prepare for the provision of care, and talked about how the subject should be addressed in their curricular programme. It is necessary to expand discussions on palliative care in paediatric oncology during the nurses' graduate programme.
Abu-Saad Huijer, Huda; Abboud, Sarah; Dimassi, Hani
To determine the knowledge, attitudes, and practices of palliative care nurses in Lebanon. Cross-sectional descriptive survey using self-administered questionnaire; 1873 nurses from 15 hospitals were included. Non-clinical nurses had better knowledge on the outcomes of palliative care than all other specialties. Oncology nurses had more favourable attitudes than other specialties with regard to informing patients about their diagnosis, patients having the right to 'do-not-resuscitate', involving patients in treatment choices, and respecting their wishes for alternative therapy. Surgical, acute critical care, and obstetric/gynaecology nurses had significantly more negative attitudes towards patients' and families' questions and concerns than other specialties. Formal education in palliative care and development of palliative care services are needed in Lebanon to provide quality care to terminally ill patients.
Kozlov, Elissa; Carpenter, Brian D; Thorsten, Michael; Heiland, Mark; Agarwal, Anupam
Palliative care consultation teams (PCCTs) provide care that enhances quality of life. The effectiveness of PCCTs depends, however, on their timely utilization by other providers. The goal of this study was to examine the timing of palliative care consultation requests and responses at a single Veteran Affairs Medical Center. The median interval between admission and consultation request was 5 days (range = 0-73 days). The median interval between consultation request and death was 23 days (range = 0-847 days). In logistic regressions, timing variables were not significant predictors of whether consultation recommendations were made or implemented. There is substantial variability in when patients receive a palliative care consultation. Many patients receive palliative care within the first week of hospitalization and their final month of life. © The Author(s) 2014.
Koper, I.; Heide, A.; Janssens, M.J.P.A.; Swart, S.; Perez, R.S.G.M.; Rietjens, J.A.C.
Purpose: Palliative sedation is considered a normal medical practice by the Royal Dutch Medical Association. Therefore, consultation of an expert is not considered mandatory. The European Association of Palliative Care (EAPC) framework for palliative sedation, however, is more stringent: it
Gustin, Allen N; Aslakson, Rebecca A
Many seriously ill geriatric patients are at higher risk for perioperative morbidity and mortality, and incorporating proactive palliative care principles may be appropriate. Advanced care planning is a hallmark of palliative care in that it facilitates alignment of the goals of care between the patient and the health care team. When these goals conflict, perioperative dilemmas can occur. Anesthesiologists must overcome many cultural and religious barriers when managing the care of these patients. Palliative care is gaining ground in several perioperative populations where integration with certain patient groups has occurred. Geriatric anesthesiologists must be aware of how palliative care and hospice influence and enhance the care of elderly patients. Copyright © 2015 Elsevier Inc. All rights reserved.
Khoo Siew Beng
Full Text Available Collusion is generally an act of love and protection for a close relative from knowing the bad news with regard to diagnosis and prognosis of his/her illness. Evidence from research studies showed that although truth hurts, deceit may well hurt more. Filial duties and obligations form the basis for non disclosure in some cultures while principles of informed consent and patient autonomy are ethical and legal obligations to provide patients with as much information as possible in some countries. Collusion serves to isolate the patient, cause family disruption, incurs tremendous psychosocial stress on patient and relatives and leads to poor standard of healthcare. It is vital to assess for presence of collusion from the outset and to avoid this distressing dilemma. This case report is an example of the great cost of collusion on the carer’s part.
Conclusions: The service could address most of the medical, psychosocial, and supportive needs of the patients and reduce their pain and symptoms. The interface between institutional-based care and home care needs more exploration and prospective studies.
Skrbina, Dijana; Simunović, Dubravka; Santek, Vjerocka; Njegovan-Zvonarević, Tatjana
Man is mortal, which means that as the earthly body perishes being, final. Disease and death will always be an inevitable and integral part of human experience. The way in which we try to identify and respond to the unique and individual needs of the dying is an indication of our maturity as a society. The number of people requiring palliative care is growing. Palliative care does not intend to either accelerate or postpone death she emphasizes the life and looks at dying as a normal process. It is an active form of care for patients with advanced, progressive illness, with the aim of suppressing pain and other symptoms in addition to providing psychological, social and spiritual support which ensures the best possible quality of life for patients and their families. Therefore requires a coordinated and interdisciplinary contribution team. The variety of professions in a team, and determine the needs of patients should be ready to provide physical, psychological, social and spiritual support using methods that result from an interdisciplinary, collaborative team approach. Development of a holistic approach and awareness in the medical and allied professions has led to a renewal of interest in the inclusion of music and other expressive media in contemporary concepts of palliative care, which are consistent with problem areas, clinical manifestations and the needs of patients. Music offers a direct and uncomplicated medium of intimacy, living in a man who listens to her, has a place where words lose their power. Music is like our existence, constantly polarizing and emotionally stimulating, as it touches the medium of the earliest layers of our becoming. The use of music in palliative care has proved very effective for a variety of effects that music creates in patients. These effects are achieved through the use of various musical techniques, such as musical improvisation, songwriting, receiving creative techniques, guided by imagination and music. These techniques
Groeneveld, E Iris; Cassel, J Brian; Bausewein, Claudia; Csikós, Ágnes; Krajnik, Malgorzata; Ryan, Karen; Haugen, Dagny Faksvåg; Eychmueller, Steffen; Gudat Keller, Heike; Allan, Simon; Hasselaar, Jeroen; García-Baquero Merino, Teresa; Swetenham, Kate; Piper, Kym; Fürst, Carl Johan; Murtagh, Fliss EM
Background: Funding models influence provision and development of palliative care services. As palliative care integrates into mainstream health care provision, opportunities to develop funding mechanisms arise. However, little has been reported on what funding models exist or how we can learn from them. Aim: To assess national models and methods for financing and reimbursing palliative care. Design: Initial literature scoping yielded limited evidence on the subject as national policy documents are difficult to identify, access and interpret. We undertook expert consultations to appraise national models of palliative care financing in England, Germany, Hungary, Republic of Ireland, New Zealand, The Netherlands, Norway, Poland, Spain, Sweden, Switzerland, the United States and Wales. These represent different levels of service development and a variety of funding mechanisms. Results: Funding mechanisms reflect country-specific context and local variations in care provision. Patterns emerging include the following: Provider payment is rarely linked to population need and often perpetuates existing inequitable patterns in service provision. Funding is frequently characterised as a mixed system of charitable, public and private payers. The basis on which providers are paid for services rarely reflects individual care input or patient needs. Conclusion: Funding mechanisms need to be well understood and used with caution to ensure best practice and minimise perverse incentives. Before we can conduct cross-national comparisons of costs and impact of palliative care, we need to understand the funding and policy context for palliative care in each country of interest. PMID:28156188
Claessen, S.J.J.; Francke, A.L.; Sixma, H.J.; de Veer, A.J.E.; Deliens, L.
Background: The Consumer Quality Index Palliative Care (CQ-index PC) is a structured questionnaire for measuring the quality of palliative care from the perspective of care users. CQ-indices assess which care aspects need quality improvement by relating answers about actual care experiences to
Claessen, S.J.J.; Francke, A.L.; Sixma, H.J.; Veer, A.J.E. de; Deliens, L.
Background: The Consumer Quality Index Palliative Care (CQ-index PC) is a structured questionnaire for measuring the quality of palliative care from the perspective of care users. CQ-indices assess which care aspects need quality improvement by relating answers about actual care experiences to
Full Text Available ... about the words we use - Duration: 4:48. Social Care Institute for Excellence 36,912 views 4:48 Pediatric Palliative Care and Support at Nemours/Alfred I. duPont Hospital ... Loading... Working... ...
An article about the growth of palliative care, a medical subspecialty that has been shown to improve patient outcomes such as symptom management, quality of life, and patient and family satisfaction with care.
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Sherman, Deborah Witt
Describes the role and responsibilities of advanced-practice nurses in palliative care and nursing's initiative in promoting high-quality care through the educational preparation of these nurses. (JOW)
Patel, Preena; Koh, Michelle; Carr, Lucinda; McHugh, Kieran [Great Ormond Street Hospital, Radiology Department, London (United Kingdom)
Palliative care is an expanding specialty within paediatrics, which has attracted little attention in the paediatric radiological literature. Paediatric patients under a palliative care team will have numerous radiological tests which we traditionally categorise under organ systems rather than under the umbrella of palliative medicine. The prevalence of children with life-limiting illness is significant. It has been estimated to be one per thousand, and this may be an underestimate. In this review, we will focus on our experience at one institution, where radiology has proven to be an invaluable partner to palliative care. We will discuss examples of conditions commonly referred to our palliative care team and delineate the crucial role of diagnostic radiology in determining treatment options. (orig.)
Chen, I-Hui; Lin, Kuan-Yu; Hu, Sophia H; Chuang, Yeu-Hui; Long, Carol O; Chang, Chia-Chi; Liu, Megan F
To investigate the knowledge of and attitudes towards palliative care for advanced dementia and their associations with demographics among nursing staff, including nurses and nursing assistants, in long-term care settings. Nursing facilities are places where persons with dementia die; therefore, providing quality end-of-life care to residents with advanced dementia is crucial. To date, little attention has been paid to palliative care practice for patients with advanced dementia. A descriptive, cross-sectional, survey design was used. In total, a sample of 300 nurses (n = 125) and nursing assistants (n = 175) working in long-term care settings in Taiwan participated in this study. Two instruments were administered: demographic characteristics and responses to the Questionnaire of Palliative Care for Advanced Dementia. Descriptive statistics and multiple regression were used for data analysis. Overall, the nurses and nursing assistants had moderate mean scores for both knowledge of and attitudes regarding palliative care for advanced dementia. Additionally, nursing staff who were nurses with greater work experience and those who had received palliative care and hospice training had greater knowledge of palliative care. In addition, nursing staff who had received dementia care training and who had worked in nursing homes had higher levels of positive attitudes towards palliative care. This study indicates the need to provide nurses and nursing assistants with more information about palliative care practice for people with advanced dementia. Particularly, providing education to those who are nursing assistants, who have less working experience, who have not received palliative and dementia care training, and who have not worked in nursing homes can improve overall nursing staff knowledge of and attitudes towards palliative care. Continuing education in principles of palliative care for advanced dementia is necessary for currently practicing nursing staff and
Nambayan, Ayda Gan
Ayda G. Nambayan, PhD, RN is the Training Consultant for The Ruth Foundation for Palliative and Hospice Care. Prior to this, she held various positions as a Consultant for Advanced Education and Training at Makati Medical Center, Philippines; a curriculum and distance learning developer for www.Cure4Kids.org, the educational website of the International Outreach Program of St. Jude Children's Research Hospital in Memphis, TN. In 2002, she retired from a faculty position from the University of Alabama at Birmingham, where she taught Adult Health Nursing for 25 years. Her nursing degrees were from the University of Santo Tomas, Manila, Philippines, Teacher's College, Columbia University in New York, NY and The University of Alabama at Birmingham, Birmingham, AL. Among her many professional awards include the Oncology Nursing Society's Pearl Moore Making a Difference Award in Oncology Nursing, International Award for Contributions in Cancer Care and the End of Life Nursing Education Consortium award for Pediatric Education.
Temkin-Greener, Helena; Ladwig, Susan; Caprio, Tom; Norton, Sally; Quill, Timothy; Olsan, Tobie; Cai, Xueya; Mukamel, Dana B
Lack of nursing home (NH)-specific palliative care practice guidelines has been identified as a barrier to improving palliative and end-of-life (EOL) quality of care. The objectives of this study were to (1) assess which of the guidelines developed by the National Consensus Project, and the corresponding preferred care practices endorsed by the National Quality Forum, are important and feasible to implement in NHs; and (2) identify the operational standards for palliative care teams in NHs. Two-round mail Delphi study. Based on the existing literature, a set of 7 domains with associated 22 palliative practice guidelines was drafted. We invited 48 NH leaders, including clinicians, to review the importance (10-point Likert scale) and the feasibility (5-point Likert scale) of these guidelines. Participants were also asked about palliative care team composition rounding frequency. The response rate to both rounds was 85%. With regard to importance, the mean rating for all guidelines was 8 or higher (ie, highly important), but there was variability in agreement with regard to 5 of the guidelines. The same 5 guidelines were also considered more difficult to implement (eg, costly, unrealistic). Overall, 17 palliative care guidelines were identified for use by NH palliative care teams. Five disciplines (social work, certified nurse assistant, nurse, physician, and nurse practitioner or physician assistant) were identified as comprising a core team and 3 were proposed as extended or ad hoc members. The palliative care guidelines and team standards identified in this study may be helpful in providing practical direction to NH administrators and staff looking to improve palliative care practice for their residents. Copyright © 2015 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.
van der Steen, Jenny T; Radbruch, Lukas; de Boer, Marike E; Jünger, Saskia; Hughes, Julian C; Larkin, Phil; Gove, Dianne; Francke, Anneke L; Koopmans, Raymond T C M; Firth, Pam; Volicer, Ladislav; Hertogh, Cees M P M
People with dementia may benefit from palliative care which specifically addresses the needs of patients and families affected by this life-limiting disease. On behalf of the European Association for Palliative Care (EAPC), we recently performed a Delphi study to define domains for palliative care in dementia and to provide recommendations for optimal care. An international panel of experts in palliative care, dementia care or both, achieved consensus on almost all domains and recommendations, but the domain concerning the applicability of palliative care to dementia required revision. To examine in detail, the opinions of the international panel of 64 experts around the applicability of palliative care, we explored feedback they provided in the Delphi process. To examine which experts found it less important or less applicable, ordinal regression analyses related characteristics of the panelists to ratings of overall importance of the applicability domain, and to agreement with the domain's four recommendations. Some experts expressed concerns about bringing up end-of-life issues prematurely and about relabeling dementia care as palliative care. Multivariable analyses with the two outcomes of importance and agreement with applicability indicated that younger or less experienced experts and those whose expertise was predominantly in dementia care found palliative care in dementia less important and less applicable. Benefits of palliative care in dementia are acknowledged by experts worldwide, but there is some controversy around its early introduction. Further studies should weigh concerns expressed around care receiving a "palliative" label versus the benefits of applying palliative care early.
Morrison, R Sean
To identify barrier to achieving universal access to high quality palliative care in Canada, review published national strategies and frameworks to promote palliative care, examine key aspects that have been linked to successful outcomes, and make recommendations for Canada. In 2014, the World Health Organization called on members to develop and implement policies to ensure palliative care is integrated into national health services. Rapid review supplemented by the author's personal files, outreach to colleagues within the international palliative care community, review of European Association for Palliative Care publications, and a subsequent search of the table of contents of the major palliative care journals. Frameworks were found for 10 countries ranging from detailed and comprehensive multi-year strategies to more general approaches including laws guaranteeing access to palliative care services for "dying" patients or recommendations for the development of clinical infrastructure. Few formal evaluations were found minimal comparative data exist regarding the quality of care, access to palliative care services, timing of access in the disease trajectory, and patient and family satisfaction with care. Factors that appear to be associated with success include: 1) input and early involvement of senior policy makers; 2) comprehensive strategies that address major barriers to universal access and that involve the key constituents; 3) a focus on enhancing the evidence base and developing a national system of quality reporting; and 4) substantial and sustained government investment. Comprehensive national strategies appear to improve access to high quality palliative care for persons with serious illness and their families. Such strategies require sustained government funding and address barriers related to infrastructure, professional and public education, workforce shortages, and an inadequate evidence base.
Baker, Mary; Luce, Jim; Bosslet, Gabriel T
Clinicians working in the intensive care unit (ICU) confront death and dying daily. ICU care can be inconsistent with a patient's values, preferences, and previously expressed goals of care. Current evidence promotes the integration of palliative care services within the ICU setting. Palliative care bridges the gap between comfort and cure, and these services are growing in the United States. This article discusses the benefits and barriers to integration of ICU and palliative care services, and a stepwise approach to implementation of palliative care services. Integration of palliative care services into ICU workflow is increasingly seen as essential to providing high-quality, comprehensive critical care. Copyright © 2015 Elsevier Inc. All rights reserved.
Bergenholtz, Heidi; Jarlbaek, Lene; Hølge-Hazelton, Bibi
It can be challenging to provide generalist palliative care in hospitals, owing to difficulties in integrating disease-oriented treatment with palliative care and the influences of cultural and organisational conditions. However, knowledge on the interactions that occur is sparse. To investigate the interactions between organisation and culture as conditions for integrated palliative care in hospital and, if possible, to suggest workable solutions for the provision of generalist palliative care. A convergent parallel mixed-methods design was chosen using two independent studies: a quantitative study, in which three independent datasets were triangulated to study the organisation and evaluation of generalist palliative care, and a qualitative, ethnographic study exploring the culture of generalist palliative nursing care in medical departments. A Danish regional hospital with 29 department managements and one hospital management. Two overall themes emerged: (1) 'generalist palliative care as a priority at the hospital', suggesting contrasting issues regarding prioritisation of palliative care at different organisational levels, and (2) 'knowledge and use of generalist palliative care clinical guideline', suggesting that the guideline had not reached all levels of the organisation. Contrasting issues in the hospital's provision of generalist palliative care at different organisational levels seem to hamper the interactions between organisation and culture - interactions that appear to be necessary for the provision of integrated palliative care in the hospital. The implementation of palliative care is also hindered by the main focus being on disease-oriented treatment, which is reflected at all the organisational levels. © The Author(s) 2015.
Gilmer MJ; Harris JS; McDonald CF; Bell CJ; Foster TL
Terrah L Foster,1,2 Cynthia J Bell,1 Carey F McDonald,2 Joy S Harris,3 Mary Jo Gilmer,1,21Vanderbilt University School of Nursing, Nashville, 2Monroe Carell Jr Children's Hospital at Vanderbilt, Nashville, 3Vanderbilt University, Nashville, TN, USAAbstract: Pediatric palliative care aims to enhance life and decrease suffering of children and adolescents living with life-threatening conditions and their loved ones. Oncology nurses are instrumental in providing palliative care to pediat...
Diehl-Schmid, J; Riedl, L; Rüsing, U; Hartmann, J; Bertok, M; Levin, C; Hamann, J; Arcand, M; Lorenzl, S; Feddersen, B; Jox, R J
As a result of a literature-based expert process, this review provides an overview about the principles of palliative care for people with advanced dementia that are relevant for clinical practice. In particular, the indications, impact and aims of palliative care for advanced dementia are described. Life-prolonging measures and management of symptoms at the end of life are discussed. Furthermore, the overview focuses on the legal basis of decision making.
Full Text Available ... Little Stars 12,195 views 10:35 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society 4,258 views 3:29 Pediatric Palliative ... views 3:34 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 62,474 views 5: ...
Full Text Available ... Little Stars 12,195 views 10:35 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society 4,256 views 3:29 Pediatric Palliative ... views 3:34 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 62,410 views 5: ...
Although many children with cancer can be cured, approximately 25 % will die of their disease. These deaths are usually anticipated and preceded by a period of palliative care focused on the end-of-life, usually referred to as the palliative phase. The PRESENCE-study was aimed at a better
Full Text Available ... The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 60,403 views 5:21 Faces Of Palliative Care - Duration: 45:21. PHCMediaServices 142,437 views 45:21 Understanding Palliative ...
Chuang, Elizabeth; Hope, Aluko A; Allyn, Katherine; Szalkiewicz, Elissa; Gary, Brittany; Gong, Michelle N
Previous research has identified a large unmet need in provision of specialist-level palliative care services in the hospital. How much of this gap is filled by primary palliative care provided by generalists or nonpalliative specialists has not been quantified. Estimates of racial and ethnic disparities have been inconsistent. The objective of this study was to 1) estimate primary and specialty palliative care delivery and to measure unmet needs in the inpatient setting and 2) explore racial and ethnic disparities in palliative care delivery. This was a cross-sectional, retrospective study of 55,658 adult admissions to two acute care hospitals in the Bronx in 2013. Patients with palliative care needs were identified by criteria adapted from the literature. The primary outcomes were delivery of primary and specialist-level palliative care. In all, 18.5% of admissions met criteria for needing palliative care. Of those, 18% received specialist-level palliative care, an estimated 30% received primary palliative care, and 37% had no evidence of palliative care or advance care planning. Black and Hispanic patients were not less likely to receive specialist-level palliative care (adjusted odds ratio [OR] black patients = 1.18, 95% CI 0.98, 1.42; adjusted OR Hispanic patients = 1.24, 95% CI 1.04, 1.48), but they were less likely to receive primary palliative care (adjusted OR black patients = 0.41, 95% CI 0.20, 0.84; adjusted OR Hispanic patients = 0.48, 95% CI 0.25, 0.94). Even when considering primary and specialty palliative care, hospitalized patients have a high prevalence of unmet palliative care need. Further research is needed understand racial and ethnic disparities in palliative care delivery. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Sipples, Rebecca; Taylor, Richard; Kirk-Walker, Deborah; Bagcivan, Gulcan; Dionne-Odom, J Nicholas; Bakitas, Marie
To explore the opportunities to incorporate palliative care into perioperative oncology patient management and education strategies for surgical oncology nurses. Articles related to palliative care and surgical oncology to determine the degree of integration, gaps, and implications for practice. Although evidence supports positive patient outcomes when palliative care is integrated in the perioperative period, uptake of palliative care into surgical settings is slow. Palliative care concepts are not adequately integrated into surgical and nursing education. With appropriate palliative care education and training, surgical oncology nurses will be empowered to foster surgical-palliative care collaborations to improve patient outcomes. Copyright © 2016 Elsevier Inc. All rights reserved.
Full Text Available Background: The goal of palliative care is not to cure, but to provide comfort and maintain the highest possible quality of life for as long as life remains. The knowledge of nurses influences the quality of care provided to these patients. The present study aimed at identifying the level of knowledge and attitude of nursing students who are the future caretakers of patients, which helps to make recommendations in incorporating palliative care concepts in the nursing curriculum. Objectives: (1 To assess the level of knowledge of nursing students on palliative care; (2 To identify the attitude of nursing students towards palliative care; (3 To find the correlation between the knowledge and attitude of nursing students; (4 To find the association between nursing students′ knowledge, attitude and selected demographic variables. Materials and Methods: A correlative survey was carried out among 83 third-year Diploma Nursing students by using cluster sampling method from selected nursing schools of Udupi district. Results: The data analyzed showed that the majority (51% of them was in the age group of 21years and 92% of them were females. Only 43.4% of them were aware of the term palliative care and it was during their training period. The data showed that 79.5% of students had poor knowledge (6.4± 1.64 on palliative care and 92.8% of them had favorable attitude (56.7± 8.5 towards palliative care. The chi-square showed a significant association between knowledge and age (χ2 =18.52,P<0.01 of the nursing students. Conclusion: Palliative care aspects should be incorporated in the diploma nursing curriculum.
Karkada, Suja; Nayak, Baby S; Malathi
The goal of palliative care is not to cure, but to provide comfort and maintain the highest possible quality of life for as long as life remains. The knowledge of nurses influences the quality of care provided to these patients. The present study aimed at identifying the level of knowledge and attitude of nursing students who are the future caretakers of patients, which helps to make recommendations in incorporating palliative care concepts in the nursing curriculum. (1) To assess the level of knowledge of nursing students on palliative care; (2) To identify the attitude of nursing students towards palliative care; (3) To find the correlation between the knowledge and attitude of nursing students; (4) To find the association between nursing students' knowledge, attitude and selected demographic variables. A correlative survey was carried out among 83 third-year Diploma Nursing students by using cluster sampling method from selected nursing schools of Udupi district. The data analyzed showed that the majority (51%) of them was in the age group of 21years and 92% of them were females. Only 43.4% of them were aware of the term palliative care and it was during their training period. The data showed that 79.5% of students had poor knowledge (6.4± 1.64) on palliative care and 92.8% of them had favorable attitude (56.7± 8.5) towards palliative care. The chi-square showed a significant association between knowledge and age (χ(2)=18.52,Pnursing students. Palliative care aspects should be incorporated in the diploma nursing curriculum.
Scaccabarozzi, Gianlorenzo; Lovaglio, Pietro Giorgio; Limonta, Fabrizio; Floriani, Maddalena; Pellegrini, Giacomo
The complexity of end-of-life care, represented by a large number of units caring for dying patients, of different types of organizations motivates the importance of measure the quality of provided care. Despite the law 38/2010 promulgated to remove the barriers and provide affordable access to palliative care, measurement, and monitoring of processes of home care providers in Italy has not been attempted. Using data drawn by an institutional voluntary observatory established in Italy in 2013, collecting home palliative care units caring for people between January and December 2013, we assess the degree to which Italian home palliative care teams endorse a set of standards required by the 38/2010 law and best practices as emerged from the literature. The evaluation strategy is based on Rasch analysis, allowing to objectively measuring both performances of facilities and quality indicators' difficulty on the same metric, using 14 quality indicators identified by the observatory's steering committee. Globally, 195 home care teams were registered in the observatory reporting globally 40 955 cured patients in 2013 representing 66% of the population of home palliative care units active in Italy in 2013. Rasch analysis identifies 5 indicators ("interview" with caregivers, continuous training provided to medical and nursing staff, provision of specialized multidisciplinary interventions, psychological support to the patient and family, and drug supply at home) easy to endorse by health care providers and 3 problematic indicators (presence of a formally established Local Network of Palliative care in the area of reference, provision of the care for most problematic patient requiring high intensity of the care, and the percentage of cancer patient dying at Home). The lack of Local Network of Palliative care, required by law 38/2010, is, at the present, the main barrier to its application. However, the adopted methodology suggests that a clear roadmap for health facilities
McCarron, Mary; McCallion, Philip; Fahey-McCarthy, Elizabeth; Connaire, Kevin
Aim: To better describe the role and timing of palliative care in supporting persons with intellectual disabilities and advanced dementia (AD). Background: Specialist palliative care providers have focused mostly on people with cancers. Working with persons with intellectual disabilities and AD offers opportunities to expand such palliative care…
Kurozumi, Yuma; Oishi, Shogo; Sugano, Yasuo; Sakashita, Akihiro; Kotooka, Norihiko; Suzuki, Makoto; Higo, Taiki; Yumino, Dai; Takada, Yasuko; Maeda, Seiko; Yamabe, Saori; Washida, Koichi; Takahashi, Tomonori; Ohtani, Tomohito; Sakata, Yasushi; Sato, Yukihito
The term palliative care has historically been associated with support for individuals with advanced incurable cancer, so cardiologists and cardiac nurses may be unfamiliar with its principles and practice. However, palliative care is now a part of end-stage heart failure management. We conducted the first nationwide survey to investigate the status of palliative care for heart failure in Japan. A self-reported questionnaire was mailed to all Japanese Circulation Society - authorized cardiology training hospitals (n=1004) in August 2016. The response deadline was December 2016. The survey focused on the following topics: basic information about the facility and multidisciplinary team, patient symptoms for palliative care, positive outcomes after providing palliative care, drug therapy as palliative care for patients with heart failure, advance care planning with patients and their families, and impediments to providing palliative care to patients with heart failure. The results of the survey will be reported in detail elsewhere. Current guidelines on palliative care do not specifically address what team members should be involved, what drugs should be used, or when palliative care should be started. This survey collected information to improve the quality of palliative care and provide more specialized palliative care within the limits of resources. Copyright © 2017 Japanese College of Cardiology. Published by Elsevier Ltd. All rights reserved.
Downing, Julia; Powell, Richard A; Marston, Joan; Huwa, Cornelius; Chandra, Lynna; Garchakova, Anna; Harding, Richard
One-third of the global population is aged under 20 years. For children with life-limiting conditions, palliative care services are required. However, despite 80% of global need occurring in low- and middle-income countries (LMICs), the majority of children's palliative care (CPC) is provided in high-income countries. This paper reviews the status of CPC services in LMICs--highlighting examples of best practice among service models in Malawi, Indonesia and Belarus--before reviewing the status of the extant research in this field. It concludes that while much has been achieved in palliative care for adults, less attention has been devoted to the education, clinical practice, funding and research needed to ensure children and young people receive the palliative care they need. 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/
De Lima, Liliana; Radbruch, Lukas
At the May 2014 meeting of the World Health Assembly, the assembly passed a resolution intended to reduce barriers to palliative care. T4eh resolution calls for integrating palliative care into national health services. It contains recommendation on improved availability and access to such care and calls for it to be included in national health policies and budgets. The full resolution with commentary is presented.
Reid, M Carrington; Ghesquiere, Angela; Kenien, Cara; Capezuti, Elizabeth; Gardner, Daniel
Over the past two decades, palliative care has established itself as a promising approach to address the complex needs of individuals with advanced illness. Palliative care is well-established in US hospitals and has recently begun to expand outside of the hospital setting to meet the needs of non-hospitalized individuals. Experts have called for the development of innovative community-based models that facilitate delivery of palliative care to this target population. Elder service agencies are important partners that researchers should collaborate with to develop new and promising models. Millions of older adults receive aging network services in the U.S., highlighting the potential reach of these models. Recent health care reform efforts provide support for community-based initiatives, where coordination of care and services, delivered via health and social service agencies, is highly prioritized. This article describes the rationale for developing such approaches, including efforts to educate elder service agency clients about palliative care; training agency staff in palliative care principles; building capacity for elder services providers to screen individuals for palliative care needs; embedding palliative care "champions" in agencies to educate staff and clients and coordinate access to services among those with palliative care needs; and leveraging telehealth resources to conduct comprehensive assessments by hospital palliative care teams for elder service clients who have palliative care needs. We maintain that leveraging the resources of elder service agencies could measurably expand the reach of palliative care in the community.
Abu-Saad Huijer, Huda
Advances in medicine have significantly reduced child mortality worldwide; however those caring for children with life-threatening medical conditions are usually committed to employing curative and life-prolonging treatments until death is at hand. This type of intensive care and attention can expose children and their families to unnecessary suffering, particularly if inadequate attention is paid to the children's physical and emotional distress. This review presents healthcare providers with the basic concepts of pediatric palliative care (PPC) available to assist them in the care of the child with life-threatening medical conditions. It defines PPC and the principles guiding it; it reviews the reasons behind PPC emphasizing developmental and epidemiological aspects of childhood death; it discusses the needs of children with life-threatening conditions and the needs of their families; and it examines PPC services available, and the obstacles and challenges faced in providing PPC.
Murphy, Edel; Froggatt, Katherine; Connolly, Sheelah; O'Shea, Eamon; Sampson, Elizabeth L; Casey, Dympna; Devane, Declan
included studies. Two review authors independently assessed for inclusion all the potential studies we identified as a result of the search strategy. We resolved any disagreement through discussion or, when required, consulted with the rest of the review team. We independently extracted data and conducted assessment of methodological quality, using standard Cochrane methods. We identified two studies of palliative care interventions for people with advanced dementia. We did not pool data due to the heterogeneity between the two trials in terms of the interventions and the settings. The two studies measured 31 different outcomes, yet they did not measure the same outcome. There are six ongoing studies that we expect to include in future versions of this review.Both studies were at high risk of bias, in part because blinding was not possible. This and small sample sizes meant that the overall certainty of all the evidence was very low.One individually randomised RCT (99 participants) evaluated the effect of a palliative care team for people with advanced dementia hospitalised for an acute illness. While this trial reported that a palliative care plan was more likely to be developed for participants in the intervention group (risk ratio (RR) 5.84, 95% confidence interval (CI) 1.37 to 25.02), the plan was only adopted for two participants, both in the intervention group, while in hospital. The palliative care plan was more likely to be available on discharge in the intervention group (RR 4.50, 95% CI 1.03 to 19.75). We found no evidence that the intervention affected mortality in hospital (RR 1.06, 95% CI 0.53 to 2.13), decisions to forgo cardiopulmonary resuscitation in hospital or the clinical care provided during hospital admission, but for the latter, event rates were low and the results were associated with a lot of uncertainty.One cluster RCT (256 participants, each enrolled with a family carer) evaluated the effect of a decision aid on end-of-life feeding options on
Hermsen, M.A.; Have, H.A.M.J. ten
With the growth and development of palliative care, interest in pastoral care, spirituality, and religion also seems to be growing. The aim of this article is to review the topic of pastoral care, spirituality, and religion appearing in the journals of palliative care, between January 1984 and
Full Text Available Palliative care in Nepal has been developing over the last 20 years, led by pioneering doctors and nurses who have gained experience in the specialty, often while working overseas, or who have had the opportunity to do clinical attachments abroad. Recently, in collaboration with international palliative care specialists, a national strategy has been developed and adopted to guide future development so that palliative care for all who need it can be provided. This article explores the faith-based context for palliative care and describes the particular issues Nepal faces, the work of Christian mission organizations in supporting palliative care development, and the need for religious and cultural sensitivity.
Vierhout, M.; Daniels, M.; Mazzotta, P.; Vlahos, J.; Mason, W.P.; Bernstein, M.
Background Palliative care, a specialty aimed at providing optimal care to patients with life-limiting and chronic conditions, has several benefits. Although palliative care is appropriate for neurosurgical conditions, including brain cancer, few studies have examined the views of brain cancer patients about palliative care. We aimed to explore the thoughts of brain cancer patients about palliative care, their opinions about early palliative care, and their preferred care setting. Methods Semi-structured interviews and the qualitative research methodologies of grounded theory were used to explore perceptions of palliative care on the part of 39 brain cancer outpatients. Results Seven overarching actions emerged: ■Patients would prefer to receive palliative care in the home.■Increased time with caregivers and family are the main appeals of home care.■Patients express dissatisfaction with brief and superficial interactions with health care providers.■Patients believe that palliative care can contribute to their emotional well-being.■Patients are open to palliative care if they believe that it will not diminish optimism.■There is a preconceived idea that palliative care is directly linked to active dying, and that supposed link generates fear in some patients.■Patients prefer to be educated about palliative care as an option early in their illness, even if they are fearful of it. Conclusions Overall, when educated about the true meaning of palliative care, most patients express interest in accessing palliative care services. Although the level of fear concerning palliative care varies in patients, most recognize the associated benefits. PMID:29270049
Vierhout, M; Daniels, M; Mazzotta, P; Vlahos, J; Mason, W P; Bernstein, M
Palliative care, a specialty aimed at providing optimal care to patients with life-limiting and chronic conditions, has several benefits. Although palliative care is appropriate for neurosurgical conditions, including brain cancer, few studies have examined the views of brain cancer patients about palliative care. We aimed to explore the thoughts of brain cancer patients about palliative care, their opinions about early palliative care, and their preferred care setting. Semi-structured interviews and the qualitative research methodologies of grounded theory were used to explore perceptions of palliative care on the part of 39 brain cancer outpatients. Seven overarching actions emerged: ■Patients would prefer to receive palliative care in the home.■Increased time with caregivers and family are the main appeals of home care.■Patients express dissatisfaction with brief and superficial interactions with health care providers.■Patients believe that palliative care can contribute to their emotional well-being.■Patients are open to palliative care if they believe that it will not diminish optimism.■There is a preconceived idea that palliative care is directly linked to active dying, and that supposed link generates fear in some patients.■Patients prefer to be educated about palliative care as an option early in their illness, even if they are fearful of it. Overall, when educated about the true meaning of palliative care, most patients express interest in accessing palliative care services. Although the level of fear concerning palliative care varies in patients, most recognize the associated benefits.
Coelho, Adriana; Parola, Vitor; Escobar-Bravo, Miguel; Apóstolo, João
Palliative care aims to provide maximum comfort to the patient. However it is unknown what factors facilitate or hinder the experience of comfort, from the perspective of inpatients of palliative care units. This lack of knowledge hinders the development of comfort interventions adjusted to these patients. The aim of this research is to describe the comfort and discomfort experienced by inpatients at palliative care units. A phenomenological descriptive study was undertaken. Ten inpatients were recruited from a Spanish palliative care unit and seven from a Portuguese palliative care unit. Data were collected using individual interviews and analysed following the method of Giorgi. Four themes reflect the essence of the lived experience: The Palliative Care as a response to the patient's needs with advanced disease, attempt to naturalize advanced disease, confrontation with their own vulnerability, openness to the spiritual dimension. Informants revealed that they experience comfort through humanized care, differentiated environment, symptomatic control, hope and relationships. The discomfort emerges from the losses and powerlessness against their situation. Even if such findings may seem intuitive, documenting them is essential because it invites us to reflect on our convictions about what it means to be comfortable for these patients, and allows incorporating this information in the design of focused interventions to maximize the comfort experience.
... from this type of care. What is palliative care? Palliative care is comprehensive treatment of the discomfort, symptoms ... of life. Palliative care is different from hospice care. Palliative care is available to you at any time ...
Ray, Daniel E; Karlekar, Mohana B; Crouse, Donnelle L; Campbell, Margaret; Curtis, J Randall; Edwards, Jeffrey; Frontera, Jennifer; Lustbader, Dana R; Mosenthal, Anne C; Mulkerin, Colleen; Puntillo, Kathleen A; Weissman, David E; Boss, Renee D; Brasel, Karen J; Nelson, Judith E
Burn specialists have long recognized the need for and have role modeled a comprehensive approach incorporating relief of distress as part of care during critical illness. More recently, palliative care specialists have become part of the healthcare team in many U.S. hospitals, especially larger academic institutions that are more likely to have designated burn centers. No current literature describes the intersection of palliative care and burn care or integration of primary and specialist palliative care in this unique context. This Perspective gives an overview of burn care; focuses on pain and other symptoms in burn intensive care unit settings; addresses special needs of critically ill burned patients, their families, and clinicians for high-quality palliative care; and highlights potential benefits of integrating primary and specialist palliative care in burn critical care. MEDLINE and the Cumulative Index to Nursing and Allied Health Literature were searched, and an e-mail survey was used to obtain information from U.S. Burn Fellowship Program directors about palliative medicine training. The Improving Palliative Care in the Intensive Care Unit Project Advisory Board synthesized published evidence with their own research and clinical experience in preparing this article. Mortality and severe morbidity for critically ill burned patients remains high. American Burn Association guidelines lay the foundation for a robust system of palliative care delivery, embedding palliative care principles and processes in intensive care by burn providers. Understanding basic burn care, challenges for symptom management and communication, and the culture of the particular burn unit, can optimize quality and integration of primary and specialist palliative care in this distinctive setting.
McNamara, B; Martin, K; Waddell, C; Yuen, K
This study assesses the perceived competence of 191 Australian palliative care professionals in delivering crosscultural care. The relationship between the perceived competence levels of professionals and their experience and training is examined. Strategies to improve crosscultural palliative care, as suggested by palliative care providers, are also presented. Information about perceived competence and the kinds of difficulties encountered in crosscultural palliative care interactions form the basis of suggested guidelines for proposed education programmes. The results of this study suggest that specific education, rather than individual experience of crosscultural interactions, which may not always be positive, is needed to improve the competence of palliative care professionals. Education, therefore, is the key to the provision of culturally appropriate care to patients and their families from all cultural backgrounds.
van Gurp, J.; van Selm, M.; van Leeuwen, E.; Vissers, K.; Hasselaar, J.
Background: Interprofessional consultation contributes to symptom control for home-based palliative care patients and improves advance care planning. Distance and travel time, however, complicate the integration of primary care and specialist palliative care. Expert online audiovisual
Gurp, J.L.P. van; Selm, M. van; Leeuwen, E. van; Vissers, K.; Hasselaar, J.G.J.
BACKGROUND: Interprofessional consultation contributes to symptom control for home-based palliative care patients and improves advance care planning. Distance and travel time, however, complicate the integration of primary care and specialist palliative care. Expert online audiovisual
Dai, Ying-Xiu; Chen, Tzeng-Ji; Lin, Ming-Hwai
The term "palliative care" has a negative connotation and may act as a barrier to early patient referrals. Rebranding has thus been proposed as a strategy to reduce the negative perceptions associated with palliative care. For example, using the term "supportive care" instead of "palliative care" in naming palliative care units has been proposed in several studies. In Taiwan, terms other than "palliative" and "hospice" are already widely used in the names of palliative care units. With this in mind, this study investigated the characteristics of palliative care unit names in order to better understand the role of naming in palliative care. Relevant data were collected from the Taiwan Academy of Hospice Palliative Medicine, the National Health Insurance Administration of the Ministry of Health and Welfare, and the open database maintained by the government of Taiwan. We found a clear phenomenon of avoiding use of the terms "palliative" and "hospice" in the naming of palliative care units, a phenomenon that reflects the stigma attached to the terms "palliative" and "hospice" in Taiwan. At the time of the study (September, 2016), there were 55 palliative care units in Taiwan. Only 20.0% (n = 11) of the palliative care unit names included the term "palliative," while 25.2% (n = 14) included the term "hospice." Religiously affiliated hospitals were less likely to use the terms "palliative" and "hospice" (χ 2 = 11.461, P = .001). There was also a lower prevalence of use of the terms "palliative" and "hospice" for naming palliative care units in private hospitals than in public hospitals (χ 2 = 4.61, P = .032). This finding highlights the strong stigma attached to the terms "palliative" and "hospice" in Taiwan. It is hypothesized that sociocultural and religious factors may partially account for this phenomenon.
Zimmermann, Camilla; Riechelmann, Rachel; Krzyzanowska, Monika; Rodin, Gary; Tannock, Ian
Specialized palliative care teams are increasingly providing care for the terminally ill. However, the impact of such teams on quality of life, satisfaction with care, and economic cost has not been examined systematically using detailed criteria for study quality. To systematically review the evidence for effectiveness of specialized palliative care. We performed a keyword search of the following databases from their inception to January 2008: MEDLINE, Ovid Healthstar, CINAHL, EMBASE, and the Cochrane Central Register of Controlled Trials. We included all randomized controlled trials in which specialized palliative care was the intervention and for which outcomes included quality of life, satisfaction with care, or economic cost. Data on population, intervention, outcome, methods, and methodological quality were extracted by 2 investigators using standardized criteria. Of 396 reports of randomized controlled trials, 22 met our inclusion criteria. There was most consistent evidence for effectiveness of specialized palliative care in improvement of family satisfaction with care (7 of 10 studies favored the intervention). Only 4 of 13 studies assessing quality of life and 1 of 14 assessing symptoms showed a significant benefit of the intervention; however, most studies lacked statistical power to report conclusive results, and quality-of-life measures were not specific for terminally ill patients. There was evidence of significant cost savings of specialized palliative care in only 1 of the 7 studies that assessed this outcome. Methodological limitations were identified in all trials, including contamination of the control group, failure to account for clustering in cluster randomization studies, and substantial problems with recruitment, attrition, and adherence. The evidence for benefit from specialized palliative care is sparse and limited by methodological shortcomings. Carefully planned trials, using a standardized palliative care intervention and measures
Full Text Available ... of Rachel—a pediatric neuroblastoma patient—and her family. The story demonstrates how palliative care can positively influence a patient's and family's experience with illness. Category Science & Technology License Standard ...
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Sakashita, Akihiro; Kishino, Megumi; Nakazawa, Yoko; Yotani, Nobuyuki; Yamaguchi, Takashi; Kizawa, Yoshiyuki
To clarify how highly active hospital palliative care teams can provide efficient and effective care regardless of the lack of full-time palliative care physicians. Semistructured focus group interviews were conducted, and content analysis was performed. A total of 7 physicians and 6 nurses participated. We extracted 209 codes from the transcripts and organized them into 3 themes and 21 categories, which were classified as follows: (1) tips for managing palliative care teams efficiently and effectively (7 categories); (2) ways of acquiring specialist palliative care expertise (9 categories); and (3) ways of treating symptoms that are difficult to alleviate (5 categories). The findings of this study can be used as a nautical chart of hospital-based palliative care team (HPCT) without full-time PC physician. Full-time nurses who have high management and coordination abilities play a central role in resource-limited HPCTs. © The Author(s) 2015.
Full Text Available Spiritual care is a vital part of holistic patient care. Awareness of common patient beliefs will facilitate discussions about spirituality. Such conversations are inherently good for the patient, deepen the caring staff-patient-family relationship, and enhance understanding of how beliefs influence care decisions. All healthcare providers are likely to encounter Muslim patients, yet many lack basic knowledge of the Muslim faith and of the applications of Islamic teachings to palliative care. Similarly, some of the concepts underlying positive Jewish approaches to palliative care are not well known. We outline Jewish and Islamic attitudes toward suffering, treatment, and the end of life. We discuss our religions' approaches to treatments deemed unnecessary by medical staff, and consider some of the cultural reasons that patients and family members might object to palliative care, concluding with specific suggestions for the medical team.
Schultz, Michael; Baddarni, Kassim; Bar-Sela, Gil
Spiritual care is a vital part of holistic patient care. Awareness of common patient beliefs will facilitate discussions about spirituality. Such conversations are inherently good for the patient, deepen the caring staff-patient-family relationship, and enhance understanding of how beliefs influence care decisions. All healthcare providers are likely to encounter Muslim patients, yet many lack basic knowledge of the Muslim faith and of the applications of Islamic teachings to palliative care. Similarly, some of the concepts underlying positive Jewish approaches to palliative care are not well known. We outline Jewish and Islamic attitudes toward suffering, treatment, and the end of life. We discuss our religions' approaches to treatments deemed unnecessary by medical staff, and consider some of the cultural reasons that patients and family members might object to palliative care, concluding with specific suggestions for the medical team.
Angela Maria Amaral Soares Abou Ali
Full Text Available In recent years elderly population is increasing substantially, about 650,000 per year, as well as the concept of unifamílies, ie, families consisting of a single person. In this paper, is proposed a reflection about health of elderly in Brazil, and the conditions of a chronic disease and its acute state - terminal. In the actual society, capitalist and capitalized, the individual is valued by his production, losing his value when acquires a disabling illnesses. There is a growing need for work, and each time there is less time and resources to manage the permanence of an elderly patient at home, or pay for a caregiver. This situation leads families to resort to hospitalization, which in turn makes the hospitals overcrowded with patients in this state, affecting both emergency care as the treatment of chronic patients. This fact occurs due to lack of hospital infrastructure, as well by the lack of units of the healthy system capable of providing palliative care. The questioning about the elderly who need palliative care, and reflection about the type of care dispended for this kind of patient, should be the focal point of professional's reflections, capable to lead him to a new way of thinking and, consequently, to inspire him to act in a new way.
Benyahia, Stéphanie; N'Fissi, Karima; Sahut-D'Izarn, Marine; Cudennec, Tristan
Epidemiological data relating to cancer and the ageing of the population highlight the need for oncology, geriatrics and palliative care to work more closely together. Geriatric and palliative care assessments in oncology are complex procedures and result in the modification of the oncological therapeutic choices. They have a significant impact on the methods of treatment of the patients concerned. Copyright © 2017 Elsevier Masson SAS. All rights reserved.
There are major disparities in the provision of palliative care around the world. In recent years, a statement of advocacy and objective has been repeatedly articulated that the provision of palliative care is a human right. This article examines the foundation for this assertion in the context of international human rights law. The strengths and weaknesses of this assertion are examined. The nature of both the right and, correlatively, the obligation on individual governments is discussed.
Buss, Mary K
In the treatment of cancer patients, many interventional radiologic procedures are palliative in nature. The goal for these therapies is often something other than cure, such as prolonged survival or improved quality of life. The goals of therapy should be matched with the patient's wishes, and must include open communication between the health care provider and the patient. Hospice and palliative medicine is its own specialty, and a multidisciplinary approach to the care of cancer patients should include discussions with these health care specialists. This article will briefly define palliative care in general, describe the specialty of hospice and palliative medicine, and discuss how hospice differs from palliative care. Finally, it will highlight opportunities for interventional radiology specialists to incorporate more deliberately palliative care skills and competencies into their own practice and to collaborate with palliative care specialists.
Ntizimira, Christian R; Nkurikiyimfura, Jean Luc; Mukeshimana, Olive; Ngizwenayo, Scholastique; Mukasahaha, Diane; Clancy, Clare
We are often asked what challenges Rwanda has faced in the development of palliative care and its integration into the healthcare system. In the past, patients have been barred from accessing strong analgesics to treat moderate to severe pain, but thanks to health initiatives, this is slowly changing. Rwanda is an example of a country where only a few years ago, access to morphine was almost impossible. Albert Einsten said 'in the middle of difficulty lies opportunity' and this sentiment could not be more relevant to the development of palliative care programmes. Through advocacy, policy, and staunch commitment to compassion, Rwandan healthcare workers are proving how palliative care can be successfully integrated into a healthcare system. As a global healthcare community, we should be asking what opportunities exist to do this across the African continent. Champions of palliative care have a chance to forge lasting collaborations between international experts and African healthcare workers. This global network could not only advocate for palliative care programmes but it would also help to create a culture where palliative care is viewed as a necessary part of all healthcare systems.
Edwards, Asher; Nam, Samuel
As the baby boomer generation ages, the need for palliative care services will be paramount and yet training for palliative care physicians is currently inadequate to meet the current palliative care needs. Nonspecialty-trained physicians will need to supplement the gap between supply and demand. Yet, no uniform guidelines exist for the training of internal medicine residents in palliative care. To our knowledge, no systematic study has been performed to evaluate how internal medicine residencies currently integrate palliative care into their training. In this study, we surveyed 338 Accreditation Council for Graduate Medical Education-accredited internal medicine program directors. We queried how palliative care was integrated into their training programs. The vast majority of respondents felt that palliative care training was "very important" (87.5%) and 75.9% of respondents offered some kind of palliative care rotation, often with a multidisciplinary approach. Moving forward, we are hopeful that the data provided from our survey will act as a launching point for more formal investigations into palliative care education for internal medicine residents. Concurrently, policy makers should aid in palliative care instruction by formalizing required palliative care training for internal medicine residents.
Krakauer, Eric L; Thinh, Dang Huy Quoc; Khanh, Quach Thanh; Huyen, Hoang Thi Mong; Tuan, Tran Diep; The, Than Ha Ngoc; Cuong, Do Duy; Thuan, Tran Van; Yen, Nguyen Phi; Van Anh, Pham; Cham, Nguyen Thi Phuong; Doyle, Kathleen P; Yen, Nguyen Thi Hai; Khue, Luong Ngoc
Palliative care began in Vietnam in 2001, but steady growth in palliative care services and education commenced several years later when partnerships for ongoing training and technical assistance by committed experts were created with the Ministry of Health, major public hospitals, and medical universities. An empirical analysis of palliative care need by the Ministry of Health in 2006 was followed by national palliative care clinical guidelines, initiation of clinical training for physicians and nurses, and revision of opioid prescribing regulations. As advanced and specialist training programs in palliative care became available, graduates of these programs began helping to establish palliative care services in their hospitals. However, community-based palliative care is not covered by government health insurance and thus is almost completely unavailable. Work is underway to test the hypothesis that insurance coverage of palliative home care not only can improve patient outcomes but also provide financial risk protection for patients' families and reduce costs for the health care system by decreasing hospital admissions near the end of life. A national palliative care policy and strategic plan are needed to maintain progress toward universally accessible cost-effective palliative care services. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
da Silva, Marcelle M; Büscher, Andreas; Moreira, Marléa Chagas
Palliative care is a recent development in health worldwide. In Brazil, a growing number of people with cancer require palliative care, emphasizing the need for investment in this aspect of health to increase the quality of life of patients during the dying process. As a developing country, Brazil lacks knowledge regarding the themes, material and financial resources, and policies of palliative care. The aim of this study was to provide insights into the Brazilian palliative care system from the perspectives of nurses and physicians. This was a descriptive and qualitative study, conducted at the palliative care unit of the Instituto Nacional de Câncer in Brazil. Twelve professionals, among them 8 nurses and 4 physicians, were interviewed in November 2013. The data were analyzed using the thematic analysis method. Ethical aspects were respected. The perspectives of the participants were characterized by 3 themes regarding the initial phase of development of palliative cancer care in Brazil: (1) controversies about when palliative cancer care should be initiated, (2) the World Health Organization recommendations and current practices, and (3) the need to invest in palliative cancer care education in Brazil. The development of palliative care is in the initial stages, and there is a possibility for growth due to recent advances. Knowledge about these challenges to palliative care could contribute to the development of strategies, such as the establishment of service organizations and networks, as well as educational and political investments for the advancement of palliative care.
Claessen, S.J.J.; Francke, A.L.; Sixma, H.J.; Veer, A.J.E. de; Deliens, L.
Background: The Consumer Quality Index Palliative Care (CQ-index PC) is a structured questionnaire for measuring the quality of palliative care from the perspective of care users. CQ-indices assess which care aspects need quality improvement by relating answers about actual care experiences to answers about the importance of certain aspects of care. Methods: To improve the chance that the new instrument has good content validity, a literature study and individual and group discussions were pe...
Dwyer, Justin; Taylor, Keryn; Boughey, Mark
Patients who articulate their psychological distress primarily through physical symptoms (referred to as medically unexplained symptoms (MUS)) pose a challenge to the skills of most clinicians, including palliative care physicians. The philosophical underpinnings of palliative care with a stated focus on symptom management and care of the person in their psychosociospiritual context lend itself to the care of these patients. The aim of this study was to investigate the characteristics to improve identification of this patient group within palliative care. Here, we report a case series of 6 patients with severe MUS who were referred to palliative care. We use illustrative case vignettes, examine clinical and demographic characteristics and review the perspectives of the multidisciplinary team to identify the common threads. This case series highlights the complexities and challenges that are inherent in providing assessment and care for patients with MUS that present to palliative care. Characteristics that were identified included the clustering of 'trigger' symptoms, backgrounds of multiple chronic illnesses and relationship dysfunction. Patient outcomes in this group were universally poor, including the death of 2 patients. Knowledge of this patient group is vital given the likely increase in prevalence of MUS as palliative care broadens its focus earlier in the trajectory of illness. The strengths of palliative care, including psychosociospiritual assessment, multidisciplinary input and communication skills holds the potential to accurately identify patients with MUS and allow the opportunity for specialist psychiatric input with the hope of improving outcomes for patients and their families. 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/.
Parker, Deborah; Clifton, Karen; Tuckett, Anthony; Walker, Helen; Reymond, Elizabeth; Prior, Teresa; McAnelly, Kristien; Jenkin, Peter; Israel, Fiona; Greeve, Kim; Glaetzer, Karen
This paper examines the use of structured Palliative Care Case Conferences in long-term care. The issues families bring to the Palliative Care Case Conference, their level of distress prior to the conference, the extent to which these issues are addressed by staff and family satisfaction with this process are described. In most developed countries, up to 30% of older people die in long-term care. A palliative approach generally refers to the resident and family as the 'unit of care'. Interventions, which include family in palliative care, are required in this setting. Descriptive and thematic results from the intervention arm of a pre-post, sequential mixed method study. Examination of documents of 32 resident/family dyads participating in a Palliative Care Case Conference, and interviews with the residents' family postintervention. Main concerns raised by family members prior to a Palliative Care Case Conference were physical and medical needs, pain, end-of-life care planning and nutrition and hydration. Families rated a high level of concern, 7.5 on a 10-point rating scale, prior to the Palliative Care Case Conference. A formalised Palliative Care Case Conference process ensured issues relating to end-of-life care planning, pastoral care, pain and comfort and physical and medical needs were well documented by staff. Issues relating to care processes and the family role in care were less well documented. All families, interviewed postintervention, recommended Palliative Care Case Conferences; and over 90% of families felt their issues were addressed to their satisfaction. Families also reported an increased understanding of the resident's current and future care. The Palliative Care Case Conference in long-term care provides an important platform for family to voice concerns. Palliative Care Case Conference documentation indicates that staff are attending to these issues, although more reference to concerns relating to care processes and the family role could be
Broom, Alex; Kirby, Emma; Good, Phillip; Wootton, Julia; Yates, Patsy; Hardy, Janet
Nurses play a pivotal role in caring for patients during the transition from life-prolonging care to palliative care. This is an area of nursing prone to emotional difficulty, interpersonal complexity, and interprofessional conflict. It is situated within complex social dynamics, including those related to establishing and accepting futility and reconciling the desire to maintain hope. Here, drawing on interviews with 20 Australian nurses, we unpack their accounts of nursing the transition to palliative care, focusing on the purpose of nursing at the point of transition; accounts of communication and strategies for representing palliative care; emotional engagement and burden; and key interprofessional challenges. We argue that in caring for patients approaching the end of life, nurses occupy precarious interpersonal and interprofessional spaces that involve a negotiated order around sentimental work, providing them with both capital (privileged access) and burden (emotional suffering) within their day-to-day work. © The Author(s) 2014.
Heneka, Nicole; Shaw, Tim; Rowett, Debra; Lapkin, Samuel; Phillips, Jane L
Opioids are a high-risk medicine frequently used to manage palliative patients' cancer-related pain and other symptoms. Despite the high volume of opioid use in inpatient palliative care services, and the potential for patient harm, few studies have focused on opioid errors in this population. To (i) identify the number of opioid errors reported by inpatient palliative care services, (ii) identify reported opioid error characteristics and (iii) determine the impact of opioid errors on palliative patient outcomes. A 24-month retrospective review of opioid errors reported in three inpatient palliative care services in one Australian state. Of the 55 opioid errors identified, 84% reached the patient. Most errors involved morphine (35%) or hydromorphone (29%). Opioid administration errors accounted for 76% of reported opioid errors, largely due to omitted dose (33%) or wrong dose (24%) errors. Patients were more likely to receive a lower dose of opioid than ordered as a direct result of an opioid error (57%), with errors adversely impacting pain and/or symptom management in 42% of patients. Half (53%) of the affected patients required additional treatment and/or care as a direct consequence of the opioid error. This retrospective review has provided valuable insights into the patterns and impact of opioid errors in inpatient palliative care services. Iatrogenic harm related to opioid underdosing errors contributed to palliative patients' unrelieved pain. Better understanding the factors that contribute to opioid errors and the role of safety culture in the palliative care service context warrants further investigation. © 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.
Behmann, Mareike; Lückmann, Sara Lena; Schneider, Nils
Improving palliative care is a public health priority. However, little is known about the views of public health experts regarding the state of palliative care in Germany and the challenges facing it. The main aim of this pilot study was to gather information on the views of internationally experienced public health experts with regard to selected palliative care issues, with the focus on Germany, and to compare their views with those of specialist palliative care experts. Qualitative guided interviews were performed with ten experts (five from palliative care, five from public health). The interviews were analysed using qualitative content analysis. Older people and non-cancer patients were identified as target groups with a particular priority for palliative care. By contrast to the public health experts, the palliative care experts emphasized the need for rehabilitative measures for palliative patients and the possibilities of providing these. Significant barriers to the further establishment of palliative care were seen, amongst other things, in the powerful lobby groups and the federalism of the German health system. The findings suggest that from the experts' point of view (1) palliative care should focus on the needs of older people particularly in view of the demographic changes; (2) more attention should be paid to rehabilitative measures in palliative care; (3) rivalries among different stakeholders regarding their responsibilities and the allocation of financial resources have to be overcome in Germany.
Full Text Available Abstract Background Improving palliative care is a public health priority. However, little is known about the views of public health experts regarding the state of palliative care in Germany and the challenges facing it. The main aim of this pilot study was to gather information on the views of internationally experienced public health experts with regard to selected palliative care issues, with the focus on Germany, and to compare their views with those of specialist palliative care experts. Qualitative guided interviews were performed with ten experts (five from palliative care, five from public health. The interviews were analysed using qualitative content analysis. Findings Older people and non-cancer patients were identified as target groups with a particular priority for palliative care. By contrast to the public health experts, the palliative care experts emphasized the need for rehabilitative measures for palliative patients and the possibilities of providing these. Significant barriers to the further establishment of palliative care were seen, amongst other things, in the powerful lobby groups and the federalism of the German health system. Conclusion The findings suggest that from the experts' point of view (1 palliative care should focus on the needs of older people particularly in view of the demographic changes; (2 more attention should be paid to rehabilitative measures in palliative care; (3 rivalries among different stakeholders regarding their responsibilities and the allocation of financial resources have to be overcome in Germany.
Williams-Reade, Jackie; Lamson, Angela L; Knight, Sharon M; White, Mark B; Ballard, Sharon M; Desai, Priti P
Due to multiple issues, integrated interdisciplinary palliative care teams in a neonatal intensive care unit (NICU) may be difficult to access, sometimes fail to be implemented, or provide inconsistent or poorly coordinated care. When implementing an effective institution-specific neonatal palliative care program, it is critical to include stakeholders from the clinical, operational, and financial worlds of healthcare. In this study, researchers sought to gain a multidisciplinary perspective into issues that may impact the implementation of a formal neonatal palliative care program at a tertiary regional academic medical center. In this focused ethnography, the primary researcher conducted semistructured interviews that explored the perspectives of healthcare administrators, finance officers, and clinicians about neonatal palliative care. The perspectives of 39 study participants informed the identification of institutional, financial, and clinical issues that impact the implementation of neonatal palliative care services at the medical center and the planning process for a formal palliative care program on behalf of neonates and their families. Healthcare professionals described experiences that influenced their views on neonatal palliative care. Key themes included: (a) uniqueness of neonatal palliative care, (b) communication and conflict among providers, (c) policy and protocol discrepancies, and (d) lack of administrative support. The present study highlighted several areas that are challenging in the provision of neonatal palliative care. Our findings underscored the importance of recognizing and procuring resources needed simultaneously from the clinical, operational, and financial worlds in order to implement and sustain a successful neonatal palliative care program.
Critical care involves caring for complex and acute needs of patients with life-threatening conditions. Despite skilful interventions, there are times when the care needed by patients and their families is primarily palliative. In this article, the author focuses on examples of ways nurses can make the palliative care they provide exemplary. Based on findings of a research study of outstanding palliative care nurses, the researcher describes the possible effect providing excellent palliative care may have on both the patient and the caregiver. Critical care nurses are often called to stand in the shadow of grief that accompanies death. Yet in doing so, these caregivers can be molded into more caring and compassionate people, and more exemplary nurses. Nurses in critical care are challenged daily to meet the multiple needs of patients and their families. Though state of the art technology, medications and advanced skills may save many lives, there are times when the care that is required is palliative. It is in these instances that a nurse 's strength and courage may be tested. By taking up this challenge, and sharing the final journey with patients, a nurse may learn many lessons. In part, caregivers may come to see that sometimes death is neither an enemy, nor a failure. Rather, sometimes death can lead to a more joyous embracing of life. Sometimes death is the only way that suffering can be erased. This article includes a description of key ways critical care nurses may address the needs of patients who are palliative. Specifically, the themes of helping people live on, individualizing care, defending human dignity, sensitive listening, sharing hope, and keeping the promise to never abandon are described. These themes all fall under the overarching theme of simple gestures, which is also described in this report.
Bétrémieux, P; Mannoni, C
The period of palliative care is a difficult time for parents and caregivers because they are all weakened by the proximity of death. First of all, because of religious and cultural differences, parents and families cannot easily express their beliefs or the rituals they are required to develop; second, this impossibility results in conflicts between the caregiver team and the family with consequences for both. Caregivers are concerned to allow the expression of religious beliefs and cultural demands because it is assumed that they may promote the work of mourning by relating the dead child to its family and roots. However, caregivers' fear not knowing the cultural context to which the family belongs and having inappropriate words or gestures, as sometimes families dare not, cannot, or do not wish to describe their cultural background. We attempt to differentiate what relates to culture and to religion and attempt to identify areas of potential disagreement between doctors, staff, and family. Everyone has to work with the parents to open a space of freedom that is not limited by cultural and religious assumptions. The appropriation of medical anthropology concepts allows caregivers to understand simply the obligations imposed on parents by their culture and/or their religion and open access to their wishes. Sometimes help from interpreters, mediators, ethnopsychologists, and religious representatives is needed to understand this reality. Copyright © 2013 Elsevier Masson SAS. All rights reserved.
Outcome evaluation of the Palliative care Emphasis program on symptom management and Assessment for Continuous Medical Education: nationwide physician education project for primary palliative care in Japan.
Yamamoto, Ryo; Kizawa, Yoshiyuki; Nakazawa, Yoko; Ohde, Sachiko; Tetsumi, Sato; Miyashita, Mitsunori
Palliative care is an essential part of medicine, but most physicians have had no formal opportunity to acquire basic skills in palliative care. In Japan, the Palliative care Emphasis program on symptom management and Assessment for Continuous Medical Education (PEACE) was launched to provide formal primary palliative care education for all physicians engaged in cancer care. This study sought to determine whether PEACE could improve physicians' knowledge of, practices in, and difficulties with palliative care. In 2011, we conducted questionnaire-based surveys before, just after, and 2 months after completion of the PEACE program in physicians participating in the program at each of 15 designated cancer hospitals in Japan. Knowledge was measured using the palliative care knowledge questionnaire for PEACE (PEACE-Q). Practices and difficulties were evaluated using the Palliative Care self-reported Practice Scale (PCPS) and the Palliative Care Difficulties Scale (PCDS), respectively. Among 223 physicians participating in the program, 85 (38%) answered the follow-up survey. Significant improvements were noted on the PEACE-Q compared with baseline immediately after completion of the program, and this progress was maintained at 2 months (21.7 ± 5.56 versus 29.5 ± 2.10 versus 28.7 ± 3.28, respectively; p palliative care.
White, Kenneth R; Roczen, Marisa L; Coyne, Patrick J; Wiencek, Clareen
Competency development among acute and critical care nurses has focused primarily on the provision of life-sustaining care and less on the care of patients who fail to respond to life-prolonging treatments. Examining nurses' beliefs, perceptions, and experiences with patients' palliative care needs may improve continuing education programs, practice resources, educational curricula, and professional nursing practice. Survey methodology was used to conduct this pilot study. Forty-nine nurses completed a 33-item survey instrument in 2012. Respondents consisted of nurses attending a critical care continuing education event and graduate nursing students in an acute care nurse practitioner program. Statistical tests were used to examine differences in perceived importance of core competencies in palliative care. Findings from this study demonstrate variation in palliative care knowledge and perceived relative importance of core competencies needed in palliative care practice. This study provides preliminary data about knowledge differences among different nursing groups and a foundation for further study. Copyright 2014, SLACK Incorporated.
Quinn, Claire; McCarthy, Sandra; Devins, Mary; O'Reilly, Maeve; Twomey, Marie; Ling, Julie
This paper reports the findings from a Delphi Study undertaken to identify the research priorities in children's palliative care in Ireland. Palliative care for children is a small and highly specialised field of healthcare that focuses on improving the quality of life of children living with, or dying from, a life-limiting condition. Ideally, support for children requiring palliative care begins at the time of diagnosis, which for many children with life-limiting conditions can be from birth. There is a notable overlap between the needs of children requiring palliative care and those with disabilities and other complex care needs, resulting in care being provided by a range of voluntary and statutory agencies. As a new specialty, there is a need to develop an evidence-based approach to providing children's palliative care. In order to do this in a systematic way, identification of the research priorities in children's palliative care within Ireland is required.
Full Text Available ... 24,259 views 5:39 My Wishes: An End Of Life Care Story (Patient) - Duration: 27:40. Medway ... Last Days: HammondCare's Palliative Care Home Support program featured on ABC NSW 7.30 - ...
Richman, Elon; Ringel, Amit; Kreniske, Jonah Susser; Safadi, Wajdi
Palliative care is recognised by the WHO as an essential component of care for the seriously ill. Geographically isolated and historically underserved communities, particularly from ethnic minority groups, face obstacles in obtaining adequate palliative care. This case involves the care of a 26-year-old Druze man suffering from a terminal cancer in his Golan Heights village. Local physicians were able to train the patient's father in a palliative care capacity. In the effort of capacity building, the physician and palliative care team also aided the aggrieved family in the process of coping. Robust support networks, both at state and community levels, facilitated the care provided. In showcasing the role of the national and local safety net in activating and building community resources to address a dearth of palliative care services in disadvantaged regions, this case models a potentially effective community-based approach to palliative care for patients from underserved populations. 2015 BMJ Publishing Group Ltd.
Sandman, Lars; Molander, Ulla; Benkel, Inger
Palliative carers constantly face ethical problems. There is lack of organised support for the carers to handle these ethical problems in a consistent way. Within organisational ethics, we find models for moral deliberation and for developing organisational culture; however, they are not combined in a structured way to support carers' everyday work. The aim of this study was to describe ethical problems faced by palliative carers and develop an adapted organisational set of values to support the handling of these problems. Ethical problems were mapped out using focus groups and content analysis. The organisational culture were developed using normative analysis and focus group methodology within a participatory action research approach. Main participants and research context: A total of 15 registered nurses and 10 assistant nurses at a palliative unit (with 19 patient beds) at a major University Hospital in Sweden. Ethical considerations: The study followed standard ethics guidelines concerning informed consent and confidentiality. We found six categories of ethical problems (with the main focus on problems relating to the patient's loved ones) and five categories of organisational obstacles. Based on these findings, we developed a set of values in three levels: a general level, an explanatory level and a level of action strategies. The ethical problems found corresponded to problems in other studies with a notable exception, the large focus on patient loved ones. The three-level set of values is a way to handle risks of formulating abstract values not providing guidance in concrete care voiced in other studies. Developing a three-level set of values adapted to the specific ethical problems in a concrete care setting is a first step towards a better handling of ethical problems.
Thompson, Sarah; Bott, Marjorie; Boyle, Diane; Gajewski, Byron; Tilden, Virginia P
Efforts to improve care for nursing home residents stand to be enhanced by measures to assess the degree to which staff provide palliative care. As the incidence of death in nursing homes increases with the aging population, the gap in measurement must be addressed. To that end, we report the development and psychometric testing of a nursing home palliative care survey. The purpose of this study was to evaluate the psychometric properties of the Palliative Care Survey (PCS) for use in nursing homes. Psychometric evaluation of the instrument was completed in two phases. Phase 1 focused on individual item analyses and subsequent revision or deletion of items, and Phase 2 evaluated evidence for reliability and validity. Phase 1 included 26 nursing homes and staff (n=717), and Phase 2 included 85 nursing homes and staff (n=2779). Data were analyzed using item-total correlations, Cronbach's alpha, confirmatory factor analysis, and analysis of variance. Support was obtained for a 51-item PCS made up of two constructs, Palliative Care Practice and Palliative Care Knowledge. The PCS measures the extent to which the nursing home staff engage in palliative care practices and have knowledge consistent with good end-of-life care. Both practice and knowledge are an essential foundation to providing good end-of-life care to nursing home residents. Efforts to improve care for the dying in nursing homes have been slowed by an absence of measurement tools that capture care processes, a gap that the PCS reported here helps fill. Copyright © 2011 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.
Pediatric palliative care and pediatric hospice care (PPC-PHC) are often essential aspects of medical care for patients who have life-threatening conditions or need end-of-life care. PPC-PHC aims to relieve suffering, improve quality of life, facilitate informed decision-making, and assist in care coordination between clinicians and across sites of care. Core commitments of PPC-PHC include being patient centered and family engaged; respecting and partnering with patients and families; pursuing care that is high quality, readily accessible, and equitable; providing care across the age spectrum and life span, integrated into the continuum of care; ensuring that all clinicians can provide basic palliative care and consult PPC-PHC specialists in a timely manner; and improving care through research and quality improvement efforts. PPC-PHC guidelines and recommendations include ensuring that all large health care organizations serving children with life-threatening conditions have dedicated interdisciplinary PPC-PHC teams, which should develop collaborative relationships between hospital- and community-based teams; that PPC-PHC be provided as integrated multimodal care and practiced as a cornerstone of patient safety and quality for patients with life-threatening conditions; that PPC-PHC teams should facilitate clear, compassionate, and forthright discussions about medical issues and the goals of care and support families, siblings, and health care staff; that PPC-PHC be part of all pediatric education and training curricula, be an active area of research and quality improvement, and exemplify the highest ethical standards; and that PPC-PHC services be supported by financial and regulatory arrangements to ensure access to high-quality PPC-PHC by all patients with life-threatening and life-shortening diseases. Copyright © 2013 by the American Academy of Pediatrics.
Kane, Pauline M; Daveson, Barbara A; Ryan, Karen; McQuillan, Regina; Higginson, Irene J; Murtagh, Fliss E M
Over the history of palliative care provision in Ireland, services have predominantly provided care to those with cancer. Previous estimates of palliative care need focused primarily on specialist palliative care and included only a limited number of nonmalignant diseases. The primary aim of this study was to estimate the potential population with generalist and/or specialist palliative care needs in Ireland using routine mortality data inclusive of nonmalignant conditions. The secondary aim was to consider the quality of Irish data available for this population-based estimate. Irish routine mortality data (2007-2011) were analyzed for malignant and nonmalignant conditions recognized as potentially requiring palliative care input, using specific International Statistical Classification of Diseases and Related Health Problems-10th Revision codes. The method developed by Murtagh et al. was used to give a population-based palliative care needs estimate, encompassing generalist and specialist palliative care need. During the period 2007-2011, there were 141,807 deaths. Eighty percent were from conditions recognized as having associated palliative care needs, with 41,253 (30%) deaths from cancer and 71,226 (50%) deaths from noncancer conditions. The majority of deaths, 81% (91,914), were among those ≥65 years. There was a 13.9% (901) increase in deaths of those ≥85 years. Deaths from dementia increased by 51.3%, with an increase in deaths from neurodegenerative disease (42.8%) and cancer (9.5%). Future palliative care policy decisions in Ireland must consider the rapidly aging Irish population with the accompanying increase in deaths from cancer, dementia, and neurodegenerative disease and associated palliative care need. New models of palliative care may be required to address this. Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Zaider, Talia; Kissane, David
In the advanced stages of illness, families manage multiple caregiving demands while facing the emotional task of preparing for the loss of their loved one. Palliative care settings are well suited to identifying families at risk for elevated distress, and providing support as they navigate this process. This review summarizes current research in the assessment and management of family distress at the end of life. The recent literature on families of terminally ill cancer patients has provided a more precise description of the relational and cultural factors that contribute to family distress. Studies eliciting the perspectives of family members on what is needed at the end of life affirm the importance of supportive communication and continuity of psychosocial care into bereavement. Other developments include efforts to establish guidelines for conducting family meetings in the palliative care setting, and to train palliative care practitioners in family-centered assessment techniques. Finally, there is a limited but growing evidence base for the utility of delivering family-focused psychosocial interventions during palliative care. The knowledge gained from current research on what is most salient to family members during palliative care is critical for ensuring effective delivery of supportive services and collaborative engagement in those services.
Khraisat, Omar Mohammad; Hamdan, Mahmoud; Ghazzawwi, Mohannad
Nurses are the heart of the palliative care team who provide high standards of care since they spend the longest time with patients. However, lack of adequate knowledge of palliative care is considered as one of the main obstacles to palliative care improvement. A survey was conducted to assess Saudi nursing students' knowledge about palliative care. Using a descriptive design, 154 students who enrolled in first year and who will graduate within 1 year were surveyed in a nursing college located in Riyadh, the capital of Saudi Arabia. The Palliative Care Quiz for Nursing (PCQN) was used to assess students' knowledge. The sample mean age was 22.1 (standard deviation (SD): 2.2), and most of the students were predominately female (93; 60.4%) and the majority were senior students who will be graduated within the current academic year (105; 68.2%). The total mean score of palliative care knowledge was low at 7.30 (SD: 0.56; range: 0-13), and the number of correctly answered statements ranged from 16 (10.4%, statement no. 7) to 91 (59.1%, statement no. 18). Eleven misconceptions about palliative care among participants are conceptually categorized into 3categories: principle and philosophy of palliative care, pain and symptom management, and psychological and spiritual care. Integrating palliative care education within the nursing programs is the backbone to improve nursing students' knowledge, namely, in principles of palliative care and symptom management.
Kaasalainen, Sharon; Brazil, Kevin; Wilson, Donna M; Willison, Kathleen; Marshall, Denise; Taniguchi, Alan; Williams, Allison
Nurses have key roles in the coordination and delivery of community-based palliative care. The purpose of this study was to examine the differences between rural and urban community nurses' delivery of palliative care services. A survey was distributed to 277 nurses employed by a community agency in Ontario, Canada, and a 60% response rate was obtained. Nurses reported spending 27% of their time providing palliative care. Rural and urban nurses had similar roles in palliative care but rural nurses spent more time travelling and were more confident in their ability to provide palliative care. Both groups of nurses reported moderate job satisfaction and moderate satisfaction with the level of interdisciplinary collaboration in their practice. Several barriers to and facilitators of optimal palliative care provision were identified. The study results provide information about the needs of nurses that practise in these settings and may provide a basis for the development of strategies to address these needs.
... HUMAN SERVICES National Institutes of Health Submission for OMB Review; Comment Request: Palliative Care... requested in writing. Proposed Collection: Palliative Care: Conversations Matter Evaluation, -0925-New... Information Collection: NINR developed Palliative Care: Conversations Matter, a pediatric palliative care...
... HUMAN SERVICES National Institutes of Health Proposed Collection; Comment Request: Palliative Care.... Proposed Collection Palliative Care: Conversations Matter Evaluation -0925--New--National Institute of... developed Palliative Care: Conversations Matter, a pediatric palliative care campaign to address the...
Low, J A; Pang, W S
There has been a gradual shift in the attitude of the medical community as well as the lay public towards greater acceptance of euthanasia as an option for care of the terminally ill and dying. There have also been calls by certain groups to actually legalize voluntary euthanasia and physician-assisted suicide for patients who meet certain conditions, some of which are as follows: that the patient be of a sound mind, suffering from an incurable or terminal illness, experiencing unbearable suffering and uncontrollable pain. The rationale for legalizing euthanasia is based on the principle of the patient's right of self-determination and the duty of doctors to relieve pain and suffering at all times. A few within the medical community quickly saw certain similarities in terms of goals and aims between euthanasia and palliative care and, thus, proposed that euthanasia be an option or choice for difficult palliative care cases. Some even went as far as to suggest that euthanasia and palliative care be part of the continuum of care for terminally ill patients. When palliative medicine fails to fully control pain and suffering for the patient, euthanasia can be the logical next step in the continuum of care. This article seeks to discuss why the rationale for legalizing euthanasia is flawed, why euthanasia goes against the fundamental principles of Medicine in general and why it is incompatible with the practice of palliative medicine.
Palliative care for patients with advanced illness is a subject of growing importance in health services, policy and research. In 2001 Ireland became one of the first nations to publish a dedicated national palliative care policy. This paper uses the \\'policy analysis triangle\\' as a framework to examine what the policy entailed, where the key ideas originated, why the policy process was activated, who were the key actors, and what were the main consequences. Although palliative care provision expanded following publication, priorities that were unaddressed or not fully embraced on the national policy agenda are identified. The factors underlying areas of non-fulfilment of policy are then discussed. In particular, the analysis highlights that policy initiatives in a relatively new field of healthcare face a trade-off between ambition and feasibility. Key policy goals could not be realised given the large resource commitments required; the competition for resources from other, better-established healthcare sectors; and challenges in expanding workforce and capacity. Additionally, the inherently cross-sectoral nature of palliative care complicated the co-ordination of support for the policy. Policy initiatives in emerging fields such as palliative care should address carefully feasibility and support in their conception and implementation.
Evenblij, K; Widdershoven, G A M; Onwuteaka-Philipsen, B D; de Kam, H; Pasman, H R W
WHAT IS KNOWN ON THE SUBJECT?: Nurses play an important role in monitoring and supporting patients and their relatives at the end of life. To date, there is a lack of recent empirical research on the experiences of psychiatric nurses in providing palliative care to psychiatric patients who suffer from life-threatening physical co-morbidity. The limited literature available indicates that palliative care for psychiatric patients needs to be improved. WHAT THIS PAPER ADDS TO EXISTING KNOWLEDGE?: This explorative study is unique in offering an insight into current palliative care practice for psychiatric patients and showed that one in three nurses working in Dutch mental health facilities is involved in palliative care provision. Important elements of palliative care, i.e.: care domains, multidisciplinary approach, early recognition and family care are recognized by nurses. Moreover, in palliative care for psychiatric patients there is more attention for psychosocial and spiritual care compared to palliative care for patients without psychiatric disorders. Patient characteristics and little attention for palliative care within mental health facilities were found to hamper timely and adequate palliative care provision by nurses. WHAT ARE THE IMPLICATIONS FOR RESEARCH AND PRACTICE?: Educating psychiatric nurses about palliative care and close collaboration between physical and mental health care are crucial to address the palliative care needs of this vulnerable patient group. Since mental health care is increasingly provided ambulatory, the development of palliative care for psychiatric patients outside mental health facilities should be closely monitored. Introduction Recent empirical research on palliative care for psychiatric patients is lacking. Aim The aim of this study was to explore nurses' experiences with and identify barriers to providing palliative care to psychiatric patients in Dutch mental health facilities. Methods Mixed-methods; 137 nurses working in
Séfora Gomez Portela
Full Text Available This research aimed at understanding and reflecting on the perceptions of occupational therapists regarding the implementation of palliative care in home care. This is an exploratory, qualitative study, through semi-structured interviews, conducted in the second semester of 2012 with eight occupational therapists with experience in palliative care in the city of São Paulo. Content analysis identified four themes: characterization and professional trajectory in the field, understanding the concepts of palliative care, home care and palliative care, and occupational therapy and palliative care in home care. The results suggest that the role of the occupational therapist in this field has taken place at different levels of health care, being addressed to people with varying needs. The use of the concept of palliative care by the interviewees exceeds the notion of end of life, following the changes in the epidemiological transition. They understand that professional services follow the trend of national palliative care services with focus on specialized levels, but manifest the importance of its implementation in primary and home care. Among the barriers to practice, they identified the complexity of “being at home “, peculiarities of palliative care with high cost demands, lack of infrastructure and implementation of the current policy. Professional training and scientific roduction in the area were viewed as inadequate, although they identified a call for change. The interviewees recognized palliative care in home care as a strong professional field, but one still requiring study and discussions regarding its limits and conditions of implementation, especially in the Unified Health System.
Conclusions: In adult oncology, there is evidence to suggest early specialist palliative care improves HRQOL, mood, treatment decision-making, health care utilization, advanced care planning, patient satisfaction, and end-of-life care. There is moderate evidence to support the role of early specialist palliative care intervention in improvement of symptoms, survival, and health-related communication. There is limited evidence at present to support role of early specialist palliative care interventions in pediatric and geriatric oncology. Qualitative studies on barriers and negative patient outcomes may provide useful insights toward restructuring early specialist palliative care interventions.
There is a broad range of palliative care available in the Netherlands. There are many options for obtaining palliative care at home. The care that terminally ill patients need can also be provided in nursing homes, care homes, hospitals and hospices. Government policy in this field is one of the
Worster, Brooke; Swartz, Kristine
With the emergence of telemedicine as a routine form of care in various venues, the opportunities to use technology to care for the most vulnerable, most ill cancer patients are extremely appealing. Increasingly, evidence supports early integration of palliative care with standard oncologic care, supported by recent NCCN guidelines to increase and improve access to palliative care. This review looks at the use of telemedicine to expand access to palliative care as well as provide better care for patients and families where travel is difficult, if not impossible. When telemedicine has been used, often in Europe, for palliative care, the results show improvements in symptom management, comfort with care as well as patient and family satisfaction. One barrier to use of telemedicine is the concerns with technology and technology-related complications in population that is often elderly, frail and not always comfortable with non-face-to-face physician care. There remain significant opportunities to explore this intersection of supportive care and telemedicine.
Schwantes, Scott; O'Brien, Helen Wells
Children with complex chronic medical conditions are at risk for significant distress during multiple points in their life. Pediatric palliative care can meaningfully assist in providing support to the child and family throughout their complex care, managing distressing symptoms, anticipating future decision points, and helping the child and family to thrive in their local community. Copyright © 2014 Elsevier Inc. All rights reserved.
Collins, Anna; McLachlan, Sue-Anne; Philip, Jennifer
Communication about palliative care is a complex task frequently delayed until otherwise unavoidable. There is a need for discussion of palliative care to be viewed as a distinct communication task that is guided by empirical data. However, little is known of patient views and responses to these encounters. To explore patient views surrounding communication about palliative care and their responses to its discussion. Cross-sectional, prospective, exploratory qualitative design, involving narrative-style interviews and underpinned by an interpretative phenomenological framework. Purposively sampled, English-speaking, adult patients with advanced cancer ( n = 30) recruited from cancer services at a tertiary metropolitan hospital in Melbourne, Australia. Three major themes evolved. (1) Death as unspeakable: death was expressed using only implicit, ambiguous or technical terms and perceived to be outside the parameters of medical interactions. (2) Palliative care as a euphemism for death: the term 'palliative care' was perceived to be used by health professionals as a tool to talk about dying and understood by patients as a euphemism for death. (3) Palliative care as unspeakable: 'palliative care' was personified by patients to mean not just death, but my death, in turn, also becoming unspeakable. This study provides important new patient insights and responses to the discussion of palliative care. Results demonstrate that the task of discussing palliative care remains complex, difficult and limited by our language. Greater consistency, sensitivity and sophistication are required when talking about palliative care to patients who may benefit from this care.
Twaddle, Martha L; Maxwell, Terri L; Cassel, J Brian; Liao, Solomon; Coyne, Patrick J; Usher, Barbara M; Amin, Alpesh; Cuny, Joanne
Palliative care is growing in the United States but little is known about the quality of care delivered. To benchmark the quality of palliative care in academic hospitals. Multicenter, cross-sectional, retrospective chart review conducted between October 1, 2002 and September 30, 2003. Thirty-five University HealthSystem Consortium (UHC) academic hospitals across the United States. A total of 1596 patient records. (1) adults, (2) high-mortality diagnoses: selected cancers, heart failure, human immunodeficiency virus (HIV), and respiratory conditions requiring ventilator support, (3) length of stay (LOS) more than 4 days, and (4) two prior admissions in the preceding 12 months. Compliance with 11 key performance measures (KPM) derived from practice standards, literature evidence, and input from a multidisciplinary expert committee. Analyses examined relationships between provision of the KPM and specific outcomes. Wide variability exists among academic hospitals in the provision of the KPM (0%-100%). The greater the compliance with KPM, the greater the improvement in quality outcomes, cost and LOS. Assessment of pain (96.1%) and dyspnea (90.2%) was high, but reduction of these symptoms was lower (73.3% and 77.2%). Documentation of prognosis (33.4%), psychosocial assessment (26.2%), communication with family/patient (46%), and timely planning for discharge disposition (53.4%) were low for this severely ill population (16.8% hospital mortality). Only 12.9% received a palliative care consultation. The study reveals significant opportunities for improvement in the effective delivery of palliative care. Care that met KPM was associated with improved quality, reduced costs and LOS. Institutions that benchmarked above 90% did so by integrating KPM into daily care processes and utilizing systematized triggers, forms and default pathways. The presence of a formalized palliative care program within a hospital system had a positive effect on the achievement of KPM, whether or
Sawatzky, Richard; Porterfield, Pat; Roberts, Della; Lee, Joyce; Liang, Leah; Reimer-Kirkham, Sheryl; Pesut, Barb; Schalkwyk, Tilly; Stajduhar, Kelli; Tayler, Carolyn; Baumbusch, Jennifer; Thorne, Sally
A palliative approach involves adapting and integrating principles and values from palliative care into the care of persons who have life-limiting conditions throughout their illness trajectories. The aim of this research was to determine what approaches to nursing care delivery support the integration of a palliative approach in hospital, residential, and home care settings. The findings substantiate the importance of embedding the values and tenets of a palliative approach into nursing care...
Fleming, Mick; Hollins Martin, Caroline J; Martin, Colin R
Quality of life measures can be used by health professionals to assess effectiveness of nutritional interventions administered to palliative care patients. Stabilizing, maintaining and attempting to increase weight in palliative care patients through the support of oral feeding, and provision of artificial feeding, has been shown to mediate the metabolic and physical wasting effects of the disease process and improve general comfort. A quality of life instrument is a multi-dimensional questionnaire that health professionals can use to measure domains relating to physical, psychological and social aspects of living, and health and disease outcomes. There are three instruments specifically designed to assess quality of life in patients receiving palliative care. These are: The Palliative Care Quality of life Instrument, The Assessment of Quality of Life at the End of Life (AQEL), and The Spitzer Quality of Life Index (SQLI). General use quality of life measures are multifaceted; however, for use with palliative care patients, they have added dimensions of spirituality, existential issues (purpose and meaning of life), family members' perceptions of quality of care, symptom control and family support. Use of quality of life scales provides health professionals and organizations with an ideal measure for planning, targeting and evaluating health interventions.
Doorenbos, Ardith Z.; Juntasopeepun, Phanida; Eaton, Linda H.; Rue, Tessa; Hong, Elizabeth; Coenen, Amy
Purpose This study aimed to describe the nursing interventions that nurses in Thailand identify as most important in promoting dignified dying. Design This study used a cross-sectional descriptive design. Method A total of 247 Thai nurses completed a paper-and-pencil survey written in Thai. The survey included both demographic questions and palliative care interventions, listed with summative rating scales, from the International Classification for Nursing Practice (ICNP) catalogue Palliative Care for Dignified Dying. Descriptive statistics were used to analyze the data. Findings The five most important nursing interventions to promote dignified dying, ranked by average importance rating, were (a) maintain dignity and privacy, (b) establish trust, (c) manage pain, (d) establish rapport, and (e) manage dyspnea. Conclusions This research identified the palliative care nursing interventions considered most important by nurses in Thailand to promote dignified dying. Implications for Practice The ICNP catalogue Palliative Care for Dignified Dying can be used for planning and managing palliative nursing care in Thailand. PMID:24014487
Gaertner, Jan; Wolf, J; Voltz, R
At present, clinicians and healthcare providers are increasingly urged to advance the provision of state-of-the-art palliative care for patients with incurable cancer. This review provides an overview about the recent findings and practical suggestions. In the last decade, the awareness about the logistic and personal resources needed to meet the somatic and psychological needs of patients with progressive and life-threatening diseases has increased and in parallel, palliative care concepts and expertise have evolved substantially. Care concepts for patients with metastatic cancer emphasized the potential of interdisciplinary care. For example, in 2010, a randomized trial reported a benefit for patients with lung cancer who received early palliative care in addition to routine care. It is discussed that this was because of increased quality of life and detailed exploration of patient preferences. Patients, families and physicians benefit from shared care concepts of oncology and specialized palliative care. Although this concept is already becoming increasingly implemented in tertiary (comprehensive cancer-) care settings, the potential of this approach should be explored for other clinical settings such as office-based oncology.
Turriziani, Adriana; Attanasio, Gennaro; Scarcella, Francesco; Sangalli, Luisa; Scopa, Anna; Genualdo, Alessandra; Quici, Stefano; Nazzicone, Giulia; Ricciotti, Maria Adelaide; La Commare, Francesco
In the last decades, palliative care has been more and more focused on the evaluation of patients' and families' satisfaction with care. However, the evaluation of customer satisfaction in palliative care presents a number of issues such as the presence of both patients and their families, the frail condition of the patients and the complexity of their needs, and the lack of standard quality indicators and appropriate measurement tools. In this manuscript, we critically review existing evidence and literature on the evaluation of satisfaction in the palliative care context. Moreover, we provide - as a practical example - the preliminary results of our experience in this setting with the development of a dedicated tool for the measurement of satisfaction.
Kamal, Arif H; Nicolla, Jonathan M; Power, Steve
Rapid changes in how palliative care clinicians are evaluated and paid present an imperative for clinicians to adeptly and routinely perform quality improvement in usual practice. Like empathic communication and facilitating goals of care discussions, quality improvement skills must be learned, honed, and practiced, so identifying problems and brainstorming solutions becomes a natural component of delivering serious illness care. Using our experience in both failures and successes in performing quality improvement, here we provide a prioritized list of 10 pearls specifically aimed to palliative care and hospice professionals. We aim to demystify quality improvement, highlight areas where rigor and a systematic approach are needed for success, and offer our own lessons learned and mistakes made to promote success for our colleagues and our field. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Balkin, Emily M; Thompson, Daria; Colson, K Ellicott; Lam, Catherine G; Matthay, Katherine K
Studies have shown that children with cancer globally lack access to palliative care. Little is known regarding physicians' perceptions of palliative care, treatment access, and self-reported competence in providing palliative care. Members of the Global Neuroblastoma Network (online tumor board) were surveyed. Eighty-three respondents met inclusion criteria; 53 (64%) completed the survey. Most respondents trained in high-income countries (HIC) but practice in low- and middle-income countries (LMIC), and care for more than five patients with neuroblastoma annually. WHO Essential Medicines in palliative care varied in availability, with incomplete access across LMIC centers. Nonpharmacologic therapies were inconsistently available. Contrary to international definitions, 17% of respondents inappropriately considered palliative care as that initiated only after curative therapy is stopped. Mean physician competence composite score (Likert scale 1-5, 5 = very competent) in providing symptomatic relief and palliative care across phases of care was 2.93 (95% CI 2.71-3.22). Physicians reported significantly greater competence in symptom management during cure-directed therapy than during end-of-life (P = 0.02) or when patients are actively dying (P = 0.007). Practicing in HIC, prior palliative care training, having access to radiotherapy, and not having to turn patients away due to bed shortages were significantly predictive of perceived competence in providing palliative care at end of life. An international sample identified gaps in treatment and palliative care service availability, in understanding the definition of palliative care, and in self-reported competence in providing palliative care. Increased perceived competence was associated with training, which supports the need for increased palliative care education and advocacy, especially in LMIC. © 2016 Wiley Periodicals, Inc.
WIENER, LORI; MCCONNELL, DENICE GRADY; LATELLA, LAUREN; LUDI, ERICA
Objective A growing multicultural society presents healthcare providers with a difficult task of providing appropriate care for individuals who have different life experiences, beliefs, value systems, religions, languages, and notions of healthcare. This is especially vital when end-of-life care is needed during childhood. There is a dearth of literature addressing cultural considerations in the pediatric palliative care field. As members of a specific culture often do not ascribe to the same religious traditions, the purpose of this article was to explore and review how culture and religion informs and shapes pediatric palliative care. Method Comprehensive literature searches were completed through an online search of nine databases for articles published between 1980 and 2011: PsychINFO, MEDLINE®, Journal of Citation Reports-Science Edition, Embase, Scopus, CINAHL®, Social Sciences Citation Index (SSCI), EBSCO, and Ovid. Key terms included: culture, transcultural, spiritual, international, ethnic, customs or religion AND end-of-life, palliative care, death, dying, cancer, or hospice, and children, pediatrics, or pediatric oncology. Reference lists in the retrieved articles were examined for additional studies that fit the inclusion criteria, and relevant articles were included for review. In addition, web-based searches of specific journals were conducted. These included, but were not limited to: Qualitative Health Research, Psycho-Oncology, Journal of Psychosocial Oncology, Journal of Pediatric Psychology, Journal of Pediatric Health Care, Journal of Pediatric Oncology Nursing, Omega, Social Work in Health Care, and Journal of Palliative Medicine. Results Thirty-seven articles met eligibility criteria. From these, seven distinct themes emerged that have implications for pediatric palliative care. These include the role of culture in decision-making, faith and the involvement of clergy, communication (spoken and unspoken language), communicating to children
Foxwell, Anessa M; Moyer, Mary E; Casarett, David J; O'Connor, Nina R
Palliative care programs are experiencing rapid growth, with demand for consults surpassing staffing. Innovative models are needed to equip nonpalliative care providers to manage basic palliative care issues. To develop a novel program of palliative care office hours for hematologic oncology advanced practice providers, and to evaluate its impact on palliative care consult volume and composition. A palliative care nurse practitioner or pharmacist was available for weekday office hours to all inpatient hematologic oncology advanced practice providers at an academic medical center to offer advice on pain, nonpain symptoms, and psychosocial distress. A retrospective study looking at outcome measures after six months of office hour utilization and palliative care consults from the hematologic oncology services. Palliative care office hours had a mean duration of 16 minutes per day (range 5 to 55). A mean of 11 patients were discussed per week (range 4 to 20). Pain, nausea, and anxiety were the issues most frequently raised. Of 299 patients discussed during office hours, 44 (14.7%) subsequently required a full palliative care consult. Overall, palliative care consults from the hematologic oncology services decreased from 19.6% to 10.2% of admissions (87/445 vs. 61/594, p care. Office hours are an efficient way to address palliative care needs when demand for palliative care consults exceeds capacity. Office hours may serve an educational function as well, enabling primary teams to manage basic palliative care issues with increasing independence over time.
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Strauss, Gerald; Nelson, Barbara J.
Interviews with 6 of 10 Veterans' Affairs programs offering postdoctoral fellowships in geropsychology indicated that only 30% included palliative care or hospice training, despite the fact that the veteran population is likely to have an increasing need for terminal illness care. (SK)
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Kelley, Amy S.; Morrison, R. Sean
Palliative care is the interdisciplinary specialty focused on improving quality of life for persons with serious illness and their families. Over the past decade,1 the field has undergone substantial growth and change, including an expanded evidence base, new care-delivery models, innovative payment mechanisms, and increasing public and professional awareness. PMID:26287850
Stilos, Kalli; Daines, Patricia; Moore, Jennifer
Interprofessional education in health care and in palliative care has been the focus of increasing attention in recent years. For health professionals to provide and deliver high-quality palliative care, collaboration and teamwork is required. Palliative care is the ideal service to introduce interprofessional teamwork to medical learners early on in their training. During a 1-month palliative care rotation in Ontario, Canada, medical learners completed a questionnaire seeking their feedback on the interprofessional team model. This article will highlight the results of the questionnaire, how the team promotes a culture of interprofessional collaborative practice, and the supportive structures that foster collaboration among professionals.
The development of palliative care in the home, requested by patients and recommended in the 2015-2018 national plan, requires the home to be considered as a specific place of care. Private practice nurses have an important role to play with the patient and their relatives, in the assessment of needs, coordination, relational care as well as in providing the care required for maintaining and continuing life, an increasingly technical process. Copyright © 2017 Elsevier Masson SAS. All rights reserved.
Osman, H. (Hibah); Rihan, A. (Alaa); Garralda, E. (Eduardo); Rhee, J.Y. (John Y.); Pons-Izquierdo, J.J. (Juan José); Lima, L. (Liliana) de; Tfayli, A. (Arafat); Centeno-Cortes, C. (Carlos)
BACKGROUND Information on the state of palliative care development in Eastern Mediterranean countries is scant. This study is the first of its kind in conducting a systematic descriptive analysis of palliative care development in the region. AIMS To describe the current status of palliative care in the Eastern Mediterranean Region according to the World Health Organization (WHO) public health strategy for integrating palliative care: policies, opioid accessibility, ...
Verpoort, Charlotte; Gastmans, Chris; Dierckx de Casterlé, Bernadette
In debates on euthanasia legalization in Belgium, the voices of nurses were scarcely heard. Yet studies have shown that nurses are involved in the caring process surrounding euthanasia. Consequently, they are in a position to offer valuable ideas about this problem. For this reason, the views of these nurses are important because of their palliative expertise and their daily confrontation with dying patients. The aim of this paper is to report a study of the views of palliative care nurses about euthanasia. A grounded theory approach was chosen, and interviews were carried out with a convenience sample of 12 palliative care nurses in Flanders (Belgium). The data were collected between December 2001 and April 2002. The majority of the nurses were not a priori for or against euthanasia, and their views were largely dependent on the situation. What counted was the degree of suffering and available palliative options. Depending on the situation, we noted both resistance and acceptance towards euthanasia. The underlying arguments for resistance included respect for life and belief in the capabilities of palliative care; arguments underlying acceptance included the quality of life and respect for patient autonomy. The nurses commented that working in palliative care had a considerable influence on one's opinion about euthanasia. In light of the worldwide debate on euthanasia, it is essential to know how nurses, who are confronted with terminally ill patients every day, think about it. Knowledge of these views can also contribute to a realistic and qualified view on euthanasia itself. This can be enlightening to the personal views of caregivers working in a diverse range of care settings.
Adames, Hector Y; Chavez-Dueñas, Nayeli Y; Fuentes, Milton A; Salas, Silvia P; Perez-Chavez, Jessica G
Culture helps us grapple with, understand, and navigate the dying process. Although often overlooked, cultural values play a critical and influential role in palliative care. The purpose of the present study was two-fold: one, to review whether Latino/a cultural values have been integrated into the palliative care literature for Latinos/as; two, identify publications that provide recommendations on how palliative care providers can integrate Latino/a cultural values into the end-of-life care. A comprehensive systematic review on the area of Latino/a cultural values in palliative care was conducted via an electronic literature search of publications between 1930-2013. Five articles were identified for reviewing, discussing, or mentioning Latino/a cultural values and palliative care. Only one article specifically addressed Latino/a cultural values in palliative care. The four remaining articles discuss or mention cultural values; however, the cultural values were not the main focus of each article's thesis. The results of the current study highlight the lack of literature specifically addressing the importance of integrating Latino/a cultural values into the delivery of palliative care. As a result, this article introduces the Culture-Centered Palliative Care Model (CCPC). The article defines five key traditional Latino/a cultural values (i.e., familismo, personalismo, respeto, confianza, and dignidad), discusses the influence of each value on palliative health care, and ends with practical recommendations for service providers. Special attention is given to the stages of acculturation and ethnic identity.
Lokk Johan; Delbari Ahmad
Abstract Parkinson's disease (PD) is one of the most common neurodegenerative disorders of the elderly population. Few therapeutic options are available for patients with PD requiring palliative care. Treatment of the early stages of PD is entirely different from later stages. During the later stages, the palliative care model is introduced to provide the patient with comfort and support. Early palliative care in PD requires minimization of dyskinesias and decreasing occurrence of motor and n...
Daniel Munday; Ruth Powys
Palliative care in Nepal has been developing over the last 20 years, led by pioneering doctors and nurses who have gained experience in the specialty, often while working overseas, or who have had the opportunity to do clinical attachments abroad. Recently, in collaboration with international palliative care specialists, a national strategy has been developed and adopted to guide future development so that palliative care for all who need it can be provided. This article explores the faith-ba...
Weaver, Meaghann S; Rosenberg, Abby R; Tager, Julia; Wichman, Christopher S; Wiener, Lori
Little is known about the composition, availability, integration, communication, perceived barriers, and work load of pediatric palliative care (PPC) providers serving children and adolescents with cancer. To summarize the structure and services of programs to better understand successes and gaps in implementing palliative care as a standard of care. Cross-sectional online survey about the palliative care domains determined by the Psychosocial Care of Children with Cancer and Their Families Workgroup. A total of 142 surveys were completed with representation from 18 countries and 39 states. Three-fourths of sites reported having a PPC program available for the pediatric cancer population at their center. Over one-fourth (28%) have been in existence less than five years. Fewer than half of sites (44%) offered 24/7 access to palliative care consultations. Neither hospital-based nor local community hospice services were available for pediatric patients at 24% of responding sites. A specific inpatient PPC unit was available at 8% of sites. Criteria for automatic palliative referrals ("trigger" diagnoses) were reported by 44% respondents. The presence of such "triggers" increased the likelihood of palliative principle introduction 3.41 times (p palliative care concepts and 17% reported children and families "always" received communication about palliative principles. The most prevalent barriers to palliative care were at the provider level. Children and adolescents with cancer do not yet receive concurrent palliative care as a universal standard.
Chover-Sierra, Elena; Martínez-Sabater, Antonio; Lapeña-Moñux, Yolanda Raquel
Palliative care is nowadays essential in nursing care, due to the increasing number of patients who require attention in final stages of their life. Nurses need to acquire specific knowledge and abilities to provide quality palliative care. Palliative Care Quiz for Nurses is a questionnaire that evaluates their basic knowledge about palliative care. The Palliative Care Quiz for Nurses (PCQN) is useful to evaluate basic knowledge about palliative care, but its adaptation into the Spanish language and the analysis of its effectiveness and utility for Spanish culture is lacking. To report the adaptation into the Spanish language and the psychometric analysis of the Palliative Care Quiz for Nurses. The Palliative Care Quiz for Nurses-Spanish Version (PCQN-SV) was obtained from a process including translation, back-translation, comparison with versions in other languages, revision by experts, and pilot study. Content validity and reliability of questionnaire were analyzed. Difficulty and discrimination indexes of each item were also calculated according to Item Response Theory (IRT). Adequate internal consistency was found (S-CVI = 0.83); Cronbach's alpha coefficient of 0.67 and KR-20 test result of 0,72 reflected the reliability of PCQN-SV. The questionnaire had a global difficulty index of 0,55, with six items which could be considered as difficult or very difficult, and five items with could be considered easy or very easy. The discrimination indexes of the 20 items, show us that eight items are good or very good while six items are bad to discriminate between good and bad respondents. Although in shows internal consistency, reliability and difficulty indexes similar to those obtained by versions of PCQN in other languages, a reformulation of the items with lowest content validity or discrimination indexes and those showing difficulties with their comprehension is an aspect to take into account in order to improve the PCQN-SV. The PCQN-SV is a useful Spanish language
Aulisio, Mark P; Chaitin, Elizabeth; Arnold, Robert M
It is clear that ethics and palliative care consultation have, in our view, much to offer intensivists as they attempt to work through the very complex and often tragic cases they face in their daily practice.Potential strengths include clarification of tangled normative issues, facilitation of shared decision making, conflict resolution,and expertise in the provision of comfort care. Despite this, it is an unfortunate fact that many intensivists remain reluctant to use ethics and palliative care services. There are, of course, many possible reasons for this, including the absence of quality services in certain institutions, issues, or power and control, and role misperceptions. It is our hope that we have helped to clarify appropriate roles for ethics and palliative care in the intensive care unit. We urge the continued development of quality ethics and palliative care services, and the use of those services by intensivists.
Malloy, Pam; Paice, Judith; Coyle, Nessa; Coyne, Patrick; Smith, Thomas; Ferrell, Betty
Many challenges exist when providing international education to those who care for people at the end of life. Though issues related to culture and language may vary, the one commonality that crosses all nations is that its people die. In general, societies seek to provide the best care they are trained to give. Many have few resources to provide this care well. Traditions of the past influence norms and dictate policies and procedures of the present. Since its inception in 2000, the End-of-Life Nursing Education Consortium Project has provided palliative care education to nurses and other members of the interdisciplinary team in six of the seven continents. This article describes the efforts of this project to improve education around the globe, with the goal of providing excellent, compassionate palliative care, irrespective of location, financial status, political views, religion, race, and/or ethnicity. © The Author(s) 2014.
Neergaard, Mette Asbjørn; Jensen, Anders Bonde; Olesen, Frede
that is vital to further improve palliative care in the primary sector.AIM. The aim of the study was to analyse the quality of palliative home care with focus on the GP's role based on evaluations by relatives of recently deceased cancer patients and professionals from both the primary and secondary health care......) The primary sector needs easy access to specialist advise, supervision and empowerment. 4) Better and easier communication pathways are important, both within the primary sector and across the sectors to improve accessibility.CONCLUSION. Our study shows a need for improvements in palliative home care...... and provides important knowledge about how these improvements are achieved.The GPs want closer supervision and improved shared care. They want to be key persons in palliative home care, but to fill this role it is vital that they take or are given the responsibility in a very transparent way, i.e.: A way...
Hudson, Peter; Hall, Chris; Boughey, Alison; Roulston, Audrey
Provision of bereavement support is an essential component of palliative care service delivery. While bereavement support is integral to palliative care, it is typically insufficiently resourced, under-researched, and not systematically applied. Our aim was to develop bereavement standards to assist palliative care services to provide targeted support to family caregivers. We employed a multiple-methods design for our study, which included: (1) a literature review, (2) a survey of palliative care service providers in Australia, (3) interviews with national (Australian) and international experts, (4) key stakeholder workshops, and (5) a modified Delphi-type survey. A total of 10 standards were developed along with a pragmatic care pathway to assist palliative care services with implementation of the standards. The bereavement standards and care pathway constitute a key initiative in the evolution of bereavement support provided by palliative care services. Future endeavors should refine and examine the impact of these standards. Additional research is required to enhance systematic approaches to quality bereavement care.
John, Prince; Ghooi, Ravindra B
Understanding the profile of end users is a key input for designing a service. Centers that provide full-scale palliative care are few and far between in our country, and there is a need to open more centers to extend the services to a larger percentage of patients. Patient data from the inception of the center till January 2016 have been stored in a database. The data were mined, exported to Excel, and analyzed. The data of 11,258 patients revealed the profile of patients, including their age, gender distribution, marital status, symptomology, and outcome. The present paper describes the profile of patients opting for palliative care in our country. The profile of patients registered at this center validates certain assumptions while debunking others. It is hoped that this profile gives some guidance to those desirous of setting up palliative care services.
Full Text Available Introduction: Understanding the profile of end users is a key input for designing a service. Centers that provide full-scale palliative care are few and far between in our country, and there is a need to open more centers to extend the services to a larger percentage of patients. Methods: Patient data from the inception of the center till January 2016 have been stored in a database. The data were mined, exported to Excel, and analyzed. Results: The data of 11,258 patients revealed the profile of patients, including their age, gender distribution, marital status, symptomology, and outcome. The present paper describes the profile of patients opting for palliative care in our country. Conclusions: The profile of patients registered at this center validates certain assumptions while debunking others. It is hoped that this profile gives some guidance to those desirous of setting up palliative care services.
Cook, A M; Finlay, I G; Edwards, A G; Hood, K; Higginson, I J; Goodwin, D M; Normand, C E; Douglas, H R
A systematic review into palliative care team effectiveness was undertaken which has, inherent in its methodology, grey literature searching. Over 100 letters were written to a systematically chosen range of service providers, commissioners, and experts in combination with requests for information in six UK national cancer/palliative care organization newsletters. In addition, the System for Information on Grey Literature (SIGLE ) database was searched. As a result, 25 document hard copies were received. The documents were, in all but one case (this one study was also highlighted by the SIGLE search), not relevant as they were predominated by annual reports, service descriptions, and needs assessments. In terms of obtaining unpublished studies for possible inclusion in the review, this comprehensive search was unsuccessful and, therefore, it would appear that grey literature searching is not a useful tool in palliative care systematic reviews.
Music therapy is increasingly becoming an intervention used in palliative care settings around the globe. While the specialty of palliative care music therapy is relatively young having emerged in the late 1980s, there is a strong and growing body of evidence demonstrating its efficacy in assisting a variety of issues common at end-of-life. There are multiple music therapy techniques that are implemented with clients in palliative care and they can be categorized in four broad areas: receptive, creative, recreative and combined. These techniques will be presented with respect to their development by clinicians as supported by the descriptive and research literature. Information is also provided on the use of music therapy in facilitating the grieving and bereavement process. Copyright © 2015 Elsevier Ltd. All rights reserved.
Uren, Sarah A; Grahamm, Tanya M
Several research studies have sought to quantify the effects of formal caregiving on the caregivers; however, limited research has described the experiences of caregiving using a qualitative research design. In this study, we used an interpretative, phenomenological method to explore how coping operates as a central resource for trained caregivers and professional nurses in a palliative care setting. Eleven participants from a community-based, palliative care organisation in South Africa provided narrative accounts of coping within the caregiving process. Our findings identified seven themes related to the different dimensions of coping and the implications of these responses on individual caregivers. In this article, we discuss the cumulative effect of caregiver exposure to stressors, consider future directions to enhance caregiving, and conclude that effective caregiver coping plays a substantial role in caregiver and patient wellbeing and should therefore be a central component of enhancing palliative care interventions.
Pfister, David; Markett, Sebastian; Müller, Monika; Müller, Sigrun; Grützner, Felix; Rolke, Roman; Kern, Martina; Schmidt-Wolf, Gabriele; Radbruch, Lukas
In Germany, more and more terminally ill patients spend their last days of life in nursing homes, and this presents a challenge for these institutions. Even though palliative care is a growing domain in health care, no quantitative in-depth evaluations of the status quo in nursing homes has been conducted so far in Germany, partly because of lacking measuring tools. This study used a new questionnaire to assess German health care professionals' theoretical knowledge of palliative care and their perceived self-efficacy. Both variables have been proven to be indicators for the quality of the implementation of palliative care in nursing homes. We used the Bonn Palliative Care Knowledge Test (Bonner Palliativwissenstest, BPW) questionnaire to measure knowledge of palliative care in the domains of medicine, care, and psychosocial care and to measure self-efficacy relating to palliative care. Care workers (N=130) in five nursing homes in the region of Aachen in western Germany answered the questionnaires. The results show low knowledge (on average 52.8% correct answers) and self-efficacy relating to palliative care, although work with dying people is their daily challenge. While general knowledge correlated with work experience, a negative correlation of specific self-efficacy with age and working experience was observed. Lower self-efficacy of care workers experienced in palliative care probably implies that the difficulty of palliative care skills is underestimated by inexperienced care workers. Palliative care training is urgently needed to improve knowledge and self-efficacy. Guidance to assist care professionals involved in palliative care in nursing homes needs to be developed and provided.
Kalman, Jill; Goldstein, Nathan E.
Abstract Background: Heart failure (HF) is the most common cause of hospitalization among adults over the age of 65. Hospital readmission rates, mortality rates, and Medicare costs for patients with this disease are high. Furthermore, patients with HF experience a number of symptoms that worsen as the disease progresses. However, a small minority of patients with HF receives hospice or palliative care. One possible reason for this may be that the HF and palliative care clinicians have differing perspectives on the role of palliative care for these patients. Aim: The goal of the article is to offer palliative care clinicians a roadmap for collaborating with HF clinicians by reviewing the needs of patients with HF. Conclusions: This article reviews the needs of patients with HF and their families, the barriers to referral to palliative care for patients with HF, and provides suggestions for improving collaboration between palliative care and HF clinicians. PMID:24901674
Pype, Peter; Symons, Linda; Wens, Johan; Van den Eynden, Bart; Stess, Ann; Cherry, Gemma; Deveugele, Myriam
There is a growing need for palliative care, with the majority of palliative patients preferring palliative home care from their general practitioner (GP). GPs join specialized palliative home care teams (PHCTs) to perform this task. GPs' views on this collaboration are not known. This study explores the perceptions and preferences of GPs toward interprofessional collaboration. By employing a grounded theory approach, five focus groups were conducted in Flanders, Belgium with a total of 29 participants (professionals from PHCTs; professionals from organizations who provide training and education in palliative care and GPs who are not connected to either of the aforementioned groups). Analysis revealed that GPs considered palliative home care as part of their job. Good relationships with patients and families were considered fundamental in the delivery of high quality care. Factors influencing effective interprofessional collaboration were team competences, team arrangements (responsibilities and task description) and communication. GPs' willingness to share responsibilities with equally competent team members requires further research.
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.
Nakazawa, Yoko; Yamamoto, Ryo; Kato, Masashi; Miyashita, Mitsunori; Kizawa, Yoshiyuki; Morita, Tatsuya
Palliative care education for health care professionals is a key element in improving access to quality palliative care. The Palliative Care Emphasis Program on Symptom Management and Assessment for Continuous Medical Education (PEACE) was designed to provide educational opportunities for all physicians in Japan. As of 2015, 57,764 physicians had completed it. The objective of this study was to estimate the effects of the program. This study was an analysis of 2 nationwide observational studies from 2008 and 2015. We conducted 2 questionnaire surveys for representative samples of physicians. The measurements used were the Palliative Care Knowledge Test (range, 0-100) and the Palliative Care Difficulties Scale (range, 1-4). Comparisons were made with the unpaired Student t test and with a multivariate linear regression model using 2 cohorts and a propensity score-matched sample. This study analyzed a total of 48,487 physicians in 2008 and a total of 2720 physicians in 2015. Between 2008 and 2015, physicians' knowledge and difficulties significantly improved on the Palliative Care Knowledge Test with total scores of 68 and 78, respectively (P Palliative Care Difficulties Scale with total scores of 2.65 and 2.49, respectively (P palliative care improved on a national level. The PEACE program may have contributed to these improvements. Cancer 2018;124:626-35. © 2017 American Cancer Society. © 2017 American Cancer Society.
capacity of health care providers is essential for the provision of adequate palliative care services in Rwanda. Keywords: Palliative care, needs, people living with HIV/AIDS (PLWHA), terminally ill, quality of life, Rwanda. RÉSUMÉ. Le nombre croissant de personnes vivant avec le VIH/SIDA (PVV) dans le monde entier a ...
Quinn, Sharon; Hickey, Deb
The contemporary challenges associated with addressing diversity, ethnicity, equality and accessibility in today's healthcare economy, sometimes lead to a reactive response where service providers strive to apply these concepts in practice. This article describes establishing a group that could engage with the broadest spectrum of the local community in ways that would make a lasting and meaningful difference to the local population, including how individuals and groups engage with and access palliative care services. The Valuing Local Diversity in Palliative Care Group was formed in May 2006. The group, whose membership is composed of statutory and voluntary services and members of various community groups, has promoted some innovative and creative partnerships.
Salins, Naveen; Ramanjulu, Raghavendra; Patra, Lipika; Deodhar, Jayita; Muckaden, Mary Ann
), and Kwon et al.(2013) showed that early specialist palliative care improves health care utilization, planned discharge, less emergency room visits, and better hospice utilization. Studies by Wiese et al. (2013), Hui et al. (2014) and Temel et al. (2010) showed that early specialist palliative care improves end-of-life care outcomes. Study by Rugno et al. (2014) showed that early specialist palliative care improves health-related communication. Studies by Wallen et al. (2012) and Zimmermann et al. (2014) shows early specialist palliative care improves patient and family satisfaction. There is a lack of robust evidence at present to support role of early specialist palliative care interventions in pediatric and geriatric oncology. Qualitative studies have demonstrated few negative outcomes of early specialist palliative care intervention. Conclusions: In adult oncology, there is evidence to suggest early specialist palliative care improves HRQOL, mood, treatment decision-making, health care utilization, advanced care planning, patient satisfaction, and end-of-life care. There is moderate evidence to support the role of early specialist palliative care intervention in improvement of symptoms, survival, and health-related communication. There is limited evidence at present to support role of early specialist palliative care interventions in pediatric and geriatric oncology. Qualitative studies on barriers and negative patient outcomes may provide useful insights toward restructuring early specialist palliative care interventions. PMID:27559252
Discrepancies Between the Supports Needed for Discharge of Patients With Terminal Cancer to Family Caregivers and What Supports Were Actually Provided in Japan: Assessment of Palliative Care Unit Nurses.
Oosono, Yasufumi; Yokoyama, Kazuhito; Itoh, Hiroaki; Enomoto, Miyuki; Ishiwata, Miki
Even if patients with terminal cancer hope to spend the rest of their lives at home, they are often unable to leave the hospital early due to their family caregivers' anxiety. This study aimed to investigate in Japan the discrepancies between the supports needed by and actually provided by palliative care unit nurses (PCUNs) to the family caregivers for discharge of patients with terminal cancer. In this cross-sectional study, self-administered questionnaires including 6-point Likert-type scales assessing the reasons for difficulties in transition to home-based care were distributed to 1227 PCUNs. Using paired t tests, the differences between the scores on perceived importance and actual supports to family caregivers were examined. The supports actually provided were classified by factor analysis. The relationships between the PCUNs' characteristics and mean scores on the supports in each category were examined using multiple regression analysis. A total of 1023 (83.4%) completed questionnaires were returned. Scores on the actually provided supports for discharge to family caregivers were consistently and significantly lower than the corresponding scores on perceived importance for all 57 items ( P care, receiving necessary training, cooperating with palliative care staff, and cooperating with local service providers were significantly associated with higher levels of actual supply of supports to family caregivers. Our findings suggest that PCUNs need to be encouraged to provide further support to family caregivers for the discharge of patients with terminal cancer.
den Herder-van der Eerden, Marlieke; Ebenau, Anne; Payne, Sheila; Preston, Nancy; Radbruch, Lukas; Linge-Dahl, Lisa; Csikos, Agnes; Busa, Csilla; Van Beek, Karen; Groot, Marieke; Vissers, Kris; Hasselaar, Jeroen
Although examining perspectives of patients on integrated palliative care organisation is essential, available literature is largely based on administrative data or healthcare professionals' perspectives. (1) Providing insight into the composition and quality of care networks of patients receiving palliative care and (2) describing perceived integration between healthcare professionals within these networks and its association with overall satisfaction. Cross-sectional explorative design. We recruited 157 patients (62% cancer, 25% chronic obstructive pulmonary disease, 13% chronic heart failure, mean age 68 years, 55% female) from 23 integrated palliative care initiatives in Belgium, Germany, the United Kingdom, Hungary and the Netherlands. About 33% reported contact with a palliative care specialist and 48% with a palliative care nurse. Relationships with palliative care specialists were rated significantly higher than other physicians ( p palliative care specialists and patients with chronic obstructive pulmonary disease (odds ratio = 0.23, confidence interval (0.08; 0.71)) had significantly lower odds of reporting contact with palliative care nurses. Perceptions of main responsible healthcare professionals or caregivers in patient's care networks varied across countries. Perceived integration was significantly associated with overall satisfaction. Palliative care professionals are not always present or recognised as such in patients' care networks. Expert palliative care involvement needs to be explicated especially for non-cancer patients. One healthcare professional should support patients in understanding and navigating their palliative care network. Patients seem satisfied with care provision as long as continuity of care is provided.
Yin, Zhenyu; Li, Jinxiang; Ma, Ke; Ning, Xiaohong; Chen, Huiping; Fu, Haiyan; Zhang, Haibo; Wang, Chun; Bruera, Eduardo; Hui, David
China is the most populous country in the world, but access to palliative care is extremely limited. A better understanding of the development of palliative care programs in China and how they overcome the barriers to provide services would inform how we can further integrate palliative care into oncology practices in China. Here, we describe the program development and infrastructure of the palliative care programs at three Chinese institutions, using these as examples to discuss strategies to accelerate palliative care access for cancer patients in China. Case study of three palliative care programs in Chengdu, Kunming, and Beijing. The three examples of palliative care delivery in China ranged from a comprehensive program that includes all major branches of palliative care in Chengdu, a program that is predominantly inpatient-based in Kunming, and a smaller program at an earlier stage of development in Beijing. Despite the numerous challenges related to the limited training opportunities, stigma on death and dying, and lack of resources and policies to support clinical practice, these programs were able to overcome many barriers to offer palliative care services to patients with advanced diseases and to advance this discipline in China through visionary leadership, collaboration with other countries to acquire palliative care expertise, committed staff members, and persistence. Palliative care is limited in China, although a few comprehensive programs exist. Our findings may inform palliative care program development in other Chinese hospitals. With a population of 1.3 billion, China is the most populous country in the world, and cancer is the leading cause of death. However, only 0.7% of hospitals offer palliative care services, which significantly limits palliative care access for Chinese cancer patients. Here, we describe the program development and infrastructure of three palliative care programs in China, using these as examples to discuss how they were
Full Text Available Children with advanced, life-limiting illness have unique needs which are different from those of adults. Pediatric palliative care is an under developed specialty. Aims : To identify concerns of parents of children with advanced, incurable cancers, and to elicit their attitudes toward revealing the diagnosis and prognosis to the sick child. Method : This study was carried out in a large tertiary cancer center in India. Parents of 20 pediatric palliative care patients attending the outpatient department were interviewed and emerging themes identified. Results : Parents showed varying degrees of anticipatory grief. Most families were financially strained. Most parents were reluctant to discuss disease and dying with the child. Siblings were rarely told or directly involved in care. There was resistance to allowing the palliative care team to communicate with the patient. Patients did not receive any formal support. Parents identified family and neighbors as the main sources of support. Conclusions : Parental attitudes hinder open communication with dying children in India. There is a need for research to explore the concerns of families of children with fatal illness. Specialist training is required for professionals working in pediatric palliative care to address this issue.
Radbruch, Lukas; Leget, Carlo; Bahr, Patrick; Müller-Busch, Christof; Ellershaw, John; de Conno, Franco; Vanden Berghe, Paul
In recognition of the ongoing discussion on euthanasia and physician-assisted suicide, the Board of Directors of the European Association for Palliative Care commissioned this white paper from the palliative care perspective. This white paper aims to provide an ethical framework for palliative care professionals on euthanasia and physician-assisted suicide. It also aims to provide an overview on the available evidence as well as a discourse of ethical principles related to these issues. Starting from a 2003 European Association for Palliative Care position paper, 21 statements were drafted and submitted to a five-round Delphi process A panel with 17 experts commented on the paper in round 1. Board members of national palliative care or hospice associations that are collective members of European Association for Palliative Care were invited to an online survey in rounds 2 and 3. The expert panel and the European Association for Palliative Care board members participated in rounds 4 and 5. This final version was adopted as an official position paper of the European Association for Palliative Care in April 2015. Main topics of the white paper are concepts and definitions of palliative care, its values and philosophy, euthanasia and physician-assisted suicide, key issues on the patient and the organizational level. The consensus process confirmed the 2003 European Association for Palliative Care white paper and its position on the relationship between palliative care and euthanasia and physician-assisted suicide. The European Association for Palliative Care feels that it is important to contribute to informed public debates on these issues. Complete consensus seems to be unachievable due to incompatible normative frameworks that clash. © The Author(s) 2015.
Senthil P Kumar
Conclusions: The overall reporting rate for pediatric palliative care articles in palliative care journals was very low and there were no randomized clinical trials and systematic reviews found. The study findings indicate a lack of adequate evidence base for pediatric palliative care.
Shega, Joseph W; Levin, Amy; Hougham, Gavin W; Cox-Hayley, Deon; Luchins, Daniel; Hanrahan, Patricia; Stocking, Carol; Sachs, Greg A
Hospice is the standard method for providing quality end-of-life care in the United States. However, studies reveal that persons with dementia are infrequently referred to hospice, that barriers exist to increasing hospice utilization in this population, and that patients with dementia would benefit from hospice or hospice-like services earlier in the disease course. The Palliative Excellence in Alzheimer Care Efforts (PEACE) program responds to these deficiencies, striving to improve end-of-life care of persons with dementia and to integrate palliative care into the primary care of patients with dementia throughout the course of the illness. The PEACE program is a disease management model for dementia that incorporates advance planning, patient-centered care, family support, and a palliative care focus from the diagnosis of dementia through its terminal stages. PEACE is coordinated through the primary care geriatrics practice of the University of Chicago. Patients and caregivers are interviewed every 6 months for 2 years, and a postdeath interview is conducted with caregivers. These interviews assess care domains important for the optimal care of persons with dementia and their caregivers. A nurse coordinator reviews interviews and provides feedback to physicians, facilitating enhanced individual care and continuous quality improvement for the practice. Initial feedback suggests patients have adequate pain control, satisfaction with quality of care, appropriate attention to prior stated wishes, and death occurring in the patient's location of choice. Families voiced similar high marks regarding quality of care. This program demonstrates an innovative model of providing quality palliative care for dementia patients and their caregivers.
Blackhall, Leslie J; Read, Paul; Stukenborg, George; Dillon, Patrick; Barclay, Joshua; Romano, Andrew; Harrison, James
Studies suggest that outpatient palliative care can reduce hospitalization and increase hospice utilization for patients with cancer, however there are insufficient resources to provide palliative care to all patients from time of diagnosis. It is also unclear whether inpatient consultation alone provides similar benefits. A better understanding of the timing, setting, and impact of palliative care for patients with cancer is needed. The purpose of this study was to measure timing of referral to outpatient palliative care and impact on end-of-life (EOL) care. The Comprehensive Assessment with Rapid Evaluation and Treatment (CARE Track) program is a phased intervention integrating outpatient palliative care into cancer care. In Year 1 patients were referred at the discretion of their oncologist. Academic medical center. We compared EOL hospitalization, hospice utilization, and costs of care for CARE Track patients compared to those never seen by palliative care or seen only in hospital. Patients were referred a median of 72.5 days prior to death. CARE Track patients had few hospitalizations at end of life, were less likely to die in hospital, had increased hospice utilization, and decreased costs of care; these results were significant even after controlling for differences between groups. Inpatient consultation alone did not impact these variables. However, only approximately half of patients with incurable cancers were referred to this program. Referral outpatient palliative care within 3 months of death improved EOL care and reduced costs, benefits not seen with inpatient care only. However, many patients were never referred, and methods of systematically identifying appropriate patients are needed.
Bueno Pernias, Maria José; Hueso Montoro, César; Guardia Mancilla, Plácido; Montoya Juárez, Rafael; García Caro, Maria Paz
Objectives: To describe the clinical encounters that occur when a palliative care team provides patient care and the features that influence these encounters and indicate whether they are favorable or unfavorable depending on the expectations and feelings of the various participants. Methods: A qualitative case study conducted via participant observation. A total of 12 observations of the meetings of palliative care teams with patients and families in different settings (home, hospital and consultation room) were performed. The visits were follow-up or first visits, either scheduled or on demand. Content analysis of the observation was performed. Results: The analysis showed the normal follow-up activity of the palliative care unit that was focused on controlling symptoms, sharing information and providing advice on therapeutic regimens and care. The environment appeared to condition the patients' expressions and the type of patient relationship. Favorable clinical encounter conditions included kindness and gratitude. Unfavorable conditions were deterioration caused by approaching death, unrealistic family objectives and limited resources. Conclusion: Home visits from basic palliative care teams play an important role in patient and family well-being. The visits seem to focus on controlling symptoms and are conditioned by available resources. PMID:27226663
In the state of Pennsylvania, a collaborative model has been developed for improving pediatric palliative care and end-of-life care services to children with life-limiting conditions and their families. The inspiration and efforts of several bereaved parents provided the initial impetus for this encouraging model. Pennsylvania's model involves cooperation and collaboration among several groups and initiatives across the state, as well as the integration of parent-professional collaboration at all levels and in each initiative. The collaborating groups include 1) a volunteer grassroots resource and education initiative, Helping Hands-Healing Hearts; 2) the Pittsburgh Pediatric Palliative Care Coalition, a coalition of concerned parents and experienced palliative and hospice care providers working together to improve service availability; and 3) the Pennsylvania Children's Hospice and Palliative Care Coalition, which developed as an outcome of a state-level Pennsylvania Pediatric Hospice Care Task Force, and which, among other activities, works with the Pennsylvania Department of Public Welfare and several Pennsylvania legislators on pertinent policy and legislative initiatives.
Radbruch, Lukas; Ling, Julie; Hegedus, Katalin; Larkin, Philip
The European Association for Palliative Care (EAPC) represents many thousands of health care workers and volunteers working in or with an interest in palliative care. In 2016, the EAPC has individual members from 48 nations across the world, and collective members from 57 national palliative care associations in 32 European countries. Throughout its history, the EAPC has produced guidance on a range of palliative care issues. The biennial congresses and research congresses and the comprehensive Web site (www.eapcnet.eu) are renowned and well utilized platforms for dissemination and exchange of palliative care information. The EAPC has also published a newsletter specifically for Eastern European and Central Asian countries that has been available in both English and Russian from 2005 to 2012. In addition, for a period of time, a Russian Web site (www.eapcspeaksrussian.eu) was also available. A survey of palliative care in Central and Eastern European nations sponsored by Open Society Foundation's International Palliative Care Initiative found that in most countries, the national language is preferred rather than using English or Russian for the provision of information. Accordingly, the EAPC Web site provides translations of white papers, position papers, and blog posts in a number of languages. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Duenk, RG; Verhagen, C; Dekhuijzen, PNR; Vissers, KCP; Engels, Y; Heijdra, Y
Introduction Early palliative care is not a common practice for patients with COPD. Important barriers are the identification of patients for palliative care and the organization of such care in this patient group. Objective Pulmonologists have a central role in providing good quality palliative care for patients with COPD. To guide future research and develop services, their view on palliative care for these patients was explored. Methods A survey study was performed by the members of the Netherlands Association of Physicians for Lung Diseases and Tuberculosis. Results The 256 respondents (31.8%) covered 85.9% of the hospital organizations in the Netherlands. Most pulmonologists (92.2%) indicated to distinguish a palliative phase in the COPD trajectory, but there was no consensus about the different criteria used for its identification. Aspects of palliative care in COPD considered important were advance care planning conversation (82%), communication between pulmonologist and general practitioner (77%), and identification of the palliative phase (75.8%), while the latter was considered the most important aspect for improvement (67.6%). Pulmonologists indicated to prefer organizing palliative care for hospitalized patients with COPD themselves (55.5%), while 30.9% indicated to prefer cooperation with a specialized palliative care team (SPCT). In the ambulatory setting, a multidisciplinary cooperation between pulmonologist, general practitioner, and a respiratory nurse specialist was preferred (71.1%). Conclusion To encourage pulmonologists to timely initiate palliative care in COPD, we recommend to conduct further research into more specific identification criteria. Furthermore, pulmonologists should improve their skills of palliative care, and the members of the SPCT should be better informed about the management of COPD to improve care during hospitalization. Communication between pulmonologist and general practitioner should be emphasized in training to improve
Duenk, R G; Verhagen, C; Dekhuijzen, Pnr; Vissers, Kcp; Engels, Y; Heijdra, Y
Early palliative care is not a common practice for patients with COPD. Important barriers are the identification of patients for palliative care and the organization of such care in this patient group. Pulmonologists have a central role in providing good quality palliative care for patients with COPD. To guide future research and develop services, their view on palliative care for these patients was explored. A survey study was performed by the members of the Netherlands Association of Physicians for Lung Diseases and Tuberculosis. The 256 respondents (31.8%) covered 85.9% of the hospital organizations in the Netherlands. Most pulmonologists (92.2%) indicated to distinguish a palliative phase in the COPD trajectory, but there was no consensus about the different criteria used for its identification. Aspects of palliative care in COPD considered important were advance care planning conversation (82%), communication between pulmonologist and general practitioner (77%), and identification of the palliative phase (75.8%), while the latter was considered the most important aspect for improvement (67.6%). Pulmonologists indicated to prefer organizing palliative care for hospitalized patients with COPD themselves (55.5%), while 30.9% indicated to prefer cooperation with a specialized palliative care team (SPCT). In the ambulatory setting, a multidisciplinary cooperation between pulmonologist, general practitioner, and a respiratory nurse specialist was preferred (71.1%). To encourage pulmonologists to timely initiate palliative care in COPD, we recommend to conduct further research into more specific identification criteria. Furthermore, pulmonologists should improve their skills of palliative care, and the members of the SPCT should be better informed about the management of COPD to improve care during hospitalization. Communication between pulmonologist and general practitioner should be emphasized in training to improve palliative care in the ambulatory setting.
Mitchell, Gary; Agnelli, Joanne; McGreevy, Jessie; Diamond, Monica; Roble, Herlindina; McShane, Elaine; Strain, Joanne
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.
Schmidt-Wolf, G; Elsner, F; Lindena, G; Hilgers, R-D; Heussen, N; Rolke, R; Ostgathe, C; Radbruch, L
With a priority programme the German Cancer Aid supported the development of quality-assured outpatient palliative care to cover the whole country. The 12 regional pilot projects funded with the aim to improve outpatient palliative care in different models and different frameworks were concurrently monitored and evaluated. The supported projects, starting and ending individually, documented all patients who were cared for using HOPE (Hospice and palliative care evaluation) and MIDOS (Minimal documentation system for palliative patients). Total data were analyzed for 3239 patients decriptively. In addition to the quantitative data the experiences of the projects were recorded in a number of workshops (2008, 2009, 2010, and 2012). In particular, the experiences reported in the final meeting in July 2012 were considered for this article as well as the final reports for the German Cancer Aid. In the quantitative evaluation 85.6% of 3239 palliative care patients had a cancer diagnosis. In all model projects the goal of a network with close cooperation of primary providers, social support, and outpatient and inpatient specialist services has been achieved. For all projects, the initial financing of the German Cancer Aid was extremely important, because contracts with health insurance funds were negotiated slowly, and could then be built on the experiences with the projects. The participants of the project-completion meeting emphasized the need to carry out a market analysis before starting palliative care organizations considering the different regional structures and target groups of patients. Education, training and continuing education programs contribute significantly to the network. A reliably funded coordination center/case management across all institutions is extremely important. © Georg Thieme Verlag KG Stuttgart · New York.
Porterfield, Pat; Roberts, Della; Lee, Joyce; Liang, Leah; Reimer-Kirkham, Sheryl; Pesut, Barb; Schalkwyk, Tilly; Stajduhar, Kelli; Tayler, Carolyn; Baumbusch, Jennifer; Thorne, Sally
A palliative approach involves adapting and integrating principles and values from palliative care into the care of persons who have life-limiting conditions throughout their illness trajectories. The aim of this research was to determine what approaches to nursing care delivery support the integration of a palliative approach in hospital, residential, and home care settings. The findings substantiate the importance of embedding the values and tenets of a palliative approach into nursing care delivery, the roles that nurses have in working with interdisciplinary teams to integrate a palliative approach, and the need for practice supports to facilitate that embedding and integration. PMID:27930401
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Jul 2, 2011 ... considered as co-analgesics or adjuvant analgesics as primary analgesics. Pain in the palliative care setting is not purely a nociceptive or physical experience but involves all aspects of human functioning: personality, affect, cognition, behaviour, and social relations. Cognition. Meaning of pain. Emotion.
Teunissen, Saskia C.; de Haes, Hanneke C.; Voest, Emile E.; de Graeff, Alexander
To assess whether age has an impact on symptoms, problems and needs of hospitalized advanced cancer patients. A prospective analysis of 181 patients referred to a Palliative Care Team was done using a standardized list of symptoms, problems and needs. Differences between 3 age groups ( <60; 60-70; >
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Adriaansen, M.J.M.; Achterberg, T. van
This article describes a methodological study concerning the development of a test instrument that can be used for measuring the effects of a course in palliative care on registered nurses and licensed practical nurses. This test instrument is comprised of two parts: an expertise and insight test
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In her day-to-day work, the nurse develops a professional posture to reach out to patients. In collaboration with the nursing assistant, she implements psycho-corporal practices such as relational touch and massage, which improve wellbeing, particularly in the framework of palliative care at home.
Gordijn, B; Visser, A
This issue presents a review of several issues in Dutch palliative care, paying attention to readjusting a distorted image due to the euthanasia practice in the Netherlands. A few articles stress the evolution of palliative care (especially in the UK and the Netherlands), developed palliative care services in the Netherlands, and new developments in the Netherlands concerning the prevention of euthanasia through palliative care. Also the needs concerning palliative care for children as well as for chronic psycho-geriatrics patients are presented. Further attention is paid to the organisation of palliative care, focusing at evaluative research on palliative support teams, caring for caregivers (experiences and evaluation of interventions for palliative care teams), and effects of transmural care on coordination and continuity of care. Finally, some articles focus on ethical considerations in the treatment of pain in hospice movement, ethical evaluation of clinical trials in palliative care, and the role of informed consent in palliative radiotherapy, stressing the participation of patients and proxies in treatment decisions. Conclusions are presented on the consequences for educational and counselling aspects of palliative care.
Lloyd-Williams, Mari; Mogan, Caroline; Dening, Karen Harrison
Dementia is now recognized as a progressive life-limiting illness where many patients can benefit from access to palliative care. The present review has focused on three areas namely, advanced care planning in supporting palliative care for dementia, hospice provision for people with dementia and provision of care within family home. In advanced care planning, there is little research on systematically developed and