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

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Joshua M. Wiener

2003-05-01

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

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

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

2016-12-01

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

End of Life Care

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

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

2014-05-01

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

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

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Miccinesi, Guido; Puliti, Donella; Paci, Eugenio

2011-01-01

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

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

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

2016-01-01

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

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

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Broeseker, Amy E.

2010-01-01

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

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

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

2006-01-01

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

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

NARCIS (Netherlands)

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

2006-01-01

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

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

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Dobbins, Elizabeth H

2016-09-22

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

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

Directory of Open Access Journals (Sweden)

Patricia Grether

2015-11-01

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

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

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Mattes, Malcolm D; Sloane, Michelle A

2015-05-01

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

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

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

2017-01-01

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

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

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Milberg, Anna; Torres, Sandra; Ågård, Pernilla

2016-01-01

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

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

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Torres, Sandra; Ågård, Pernilla

2016-01-01

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

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

Directory of Open Access Journals (Sweden)

Anna Milberg

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

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

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Grindrod, Andrea; Rumbold, Bruce

2017-01-01

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

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

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Wilkie, Diana J; Ezenwa, Miriam O

2012-01-01

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

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

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

2017-10-01

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

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

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

2017-11-01

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

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

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

2017-07-01

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

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

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Mendoza, Roger Lee

2017-09-01

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

Mediating Systems of Care: Emergency Calls to Long-Term Care Facilities at Life's End.

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Waldrop, Deborah P; McGinley, Jacqueline M; Clemency, Brian

2018-04-09

Nursing home (NH) residents account for over 2.2 million emergency department visits yearly; the majority are cared for and transported by prehospital providers (emergency medical technicians and paramedics). The purpose of this study was to investigate prehospital providers' perceptions of emergency calls at life's end. This article focuses on perceptions of end-of-life calls in long-term care (LTC). This pilot study employed a descriptive cross-sectional design. Concepts from the symbolic interaction theory guided the exploration of perceptions and interpretations of emergency calls in LTC facilities. A purposeful sample of prehospital providers was developed from one agency in a small northeastern U.S. city. Semistructured interviews were conducted with 43 prehospital providers to explore their perceptions of factors that trigger emergency end-of-life calls in LTC facilities. Qualitative data analysis involved iterative coding in an inductive process that included open, systematic, focused, and axial coding. Interview themes illustrated the contributing factors as follows: care crises; dying-related turmoil; staffing ratios; and organizational protocols. Distress was crosscutting and present in all four themes. The findings illuminate how prehospital providers become mediators between NHs and emergency departments by managing tension, conflict, and challenges in patient care between these systems and suggest the importance of further exploration of interactions between LTC staff, prehospital providers, and emergency departments. Enhanced communication between LTC facilities and prehospital providers is important to address potentially inappropriate calls and transport requests and to identify means for collaboration in the care of sick frail residents.

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

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

2018-01-01

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

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

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

2017-01-01

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

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

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

2015-12-01

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

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

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2014-01-01

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

Three factors critical for end-of-life care.

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Franey, S G

1996-01-01

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

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

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

2002-01-01

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

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

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Adesina, Oluwatomilayo; DeBellis, Anita; Zannettino, Lana

2014-08-01

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

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

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Dame, Linda; Hoebeke, Roberta

2016-12-01

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

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

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

2018-06-01

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

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

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

2018-07-01

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

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

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

2016-12-01

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

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

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Hiruy, Kiros; Mwanri, Lillian

2014-03-01

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

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

Directory of Open Access Journals (Sweden)

Anna Spathis

2008-03-01

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

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

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Brown, Hilary; Johnston, Bridget; Ostlund, Ulrika

2011-05-01

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

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

Directory of Open Access Journals (Sweden)

Anna E. van der Wath

2015-11-01

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

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

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

2013-01-01

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

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

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

2013-08-01

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

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

Science.gov (United States)

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

2006-09-01

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

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

Science.gov (United States)

Rautureau, Pascal

2018-04-01

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

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

Science.gov (United States)

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

2014-01-01

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

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

Science.gov (United States)

Johnston, Bridget; Östlund, Ulrika; Brown, Hilary

2012-10-01

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

End-of-life care: Indian perspective

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

2013-01-01

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

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

Science.gov (United States)

Wrigley, Anthony

2015-08-01

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

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

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

2016-12-01

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

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

NARCIS (Netherlands)

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

2011-01-01

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

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

Science.gov (United States)

Bonneval, Camille

2016-02-01

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

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

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

2016-01-01

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

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

Science.gov (United States)

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

2009-02-01

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

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

Science.gov (United States)

Pham, B; Krahn, M

2014-01-01

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

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

Science.gov (United States)

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

2016-05-01

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

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

Science.gov (United States)

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

2014-09-01

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

End-of-life decisions in the intensive care unit

DEFF Research Database (Denmark)

Jensen, Hanne Irene

2012-01-01

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

Occupational Variation in End-of-Life Care Intensity.

Science.gov (United States)

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

2018-03-01

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

Doctors' learning experiences in end-of-life care

DEFF Research Database (Denmark)

Fosse, Anette; Ruths, Sabine; Malterud, Kirsti

2017-01-01

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

Shared decision-making in end-stage renal disease: a protocol for a multi-center study of a communication intervention to improve end-of-life care for dialysis patients.

Science.gov (United States)

Eneanya, Nwamaka D; Goff, Sarah L; Martinez, Talaya; Gutierrez, Natalie; Klingensmith, Jamie; Griffith, John L; Garvey, Casey; Kitsen, Jenny; Germain, Michael J; Marr, Lisa; Berzoff, Joan; Unruh, Mark; Cohen, Lewis M

2015-06-12

End-stage renal disease carries a prognosis similar to cancer yet only 20 % of end-stage renal disease patients are referred to hospice. Furthermore, conversations between dialysis team members and patients about end-of-life planning are uncommon. Lack of provider training about how to communicate prognostic data may contribute to the limited number of end-of-life care discussions that take place with this chronically ill population. In this study, we will test the Shared Decision-Making Renal Supportive Care communication intervention to systematically elicit patient and caretaker preferences for end-of-life care so that care concordant with patients' goals can be provided. This multi-center study will deploy an intervention to improve end-of-life communication for hemodialysis patients who are at high risk of death in the ensuing six months. The intervention will be carried out as a prospective cohort with a retrospective cohort serving as the comparison group. Patients will be recruited from 16 dialysis units associated with two large academic centers in Springfield, Massachusetts and Albuquerque, New Mexico. Critical input from patient advisory boards, a stakeholder panel, and initial qualitative analysis of patient and caretaker experiences with advance care planning have informed the communication intervention. Rigorous communication training for hemodialysis social workers and providers will ensure that standardized study procedures are performed at each dialysis unit. Nephrologists and social workers will communicate prognosis and provide advance care planning in face-to-face encounters with patients and families using a social work-centered algorithm. Study outcomes including frequency and timing of hospice referrals, patient and caretaker satisfaction, quality of end-of-life discussions, and quality of death will be assessed over an 18 month period. The Shared Decision-Making Renal Supportive Care Communication intervention intends to improve discussions

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

Science.gov (United States)

Shinall, Myrick C

2014-01-01

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

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

Science.gov (United States)

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

2015-08-01

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

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

Science.gov (United States)

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

2018-06-01

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

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

Science.gov (United States)

Baumann, Steven L; Todaro-Franceschi, Vidette

2017-07-01

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

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

Science.gov (United States)

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

2014-10-15

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

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

Science.gov (United States)

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

2013-03-01

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

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

Science.gov (United States)

Paganini, Maria Cristina; Bousso, Regina Szylit

2015-11-01

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

Questioning care at the end of life.

Science.gov (United States)

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

2005-06-01

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

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

Science.gov (United States)

Papadopoulos, Irena; Lay, Margaret

2016-03-01

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

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

Science.gov (United States)

Newhouse, Leonid

2013-01-01

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

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

Science.gov (United States)

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

2013-08-07

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

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

LENUS (Irish Health Repository)

Hayden, Deborah

2011-11-01

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

End of Life: An Overview

Science.gov (United States)

Toner, Mary Ann; Shadden, Barbara B.

2012-01-01

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

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

Science.gov (United States)

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

2007-12-01

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

Spirituality in cancer care at the end of life.

Science.gov (United States)

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

2013-01-01

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

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

Science.gov (United States)

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

2010-01-01

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

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

Science.gov (United States)

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

2017-12-01

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

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

Science.gov (United States)

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

2017-12-01

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

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

Science.gov (United States)

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

2011-12-01

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

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

Science.gov (United States)

Fink-Samnick, Ellen

2016-01-01

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

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

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Callaghan, Katharine A; Fanning, Joseph B

2018-02-01

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

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

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

2018-01-01

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

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

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

2017-06-01

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

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

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

2016-04-01

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

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

Directory of Open Access Journals (Sweden)

O'Neill Joseph F

2003-10-01

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

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

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Sander, Ruth

2012-11-30

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

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

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

2014-04-01

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

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

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

2014-01-01

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

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

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

2013-08-01

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

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

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Churchill, Larry R

2015-04-01

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

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

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

2015-02-01

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

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

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

2016-09-01

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

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

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

2014-01-01

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

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

Science.gov (United States)

2011-06-16

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

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

Directory of Open Access Journals (Sweden)

Amy J. Thurston

2011-01-01

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

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

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

2017-09-01

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

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

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

2015-11-01

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

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

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

2016-01-01

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

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

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

2012-08-01

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

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

Science.gov (United States)

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

2018-01-01

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

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

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Stensland, Meredith; Sanders, Sara

2016-01-01

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

[Conscience clause in end-of-life care.

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

2017-05-01

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

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

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

2015-06-01

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

End of Life Issues

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

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

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

2011-01-01

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

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

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Tait, Glendon R.; Hodges, Brian D.

2009-01-01

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

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

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

2015-01-01

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

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

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

2017-09-01

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

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

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

2012-02-01

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

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

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

2009-01-01

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

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

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Grindrod, Andrea; Rumbold, Bruce

2018-04-01

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

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

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

2017-03-16

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

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

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Pascual-Fernández, M Cristina

2014-01-01

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

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

Science.gov (United States)

Grabow, Debra

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

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

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

2015-06-15

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

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

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Luk, James K H; Chan, Felix H W

2017-08-28

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

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

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

2017-12-19

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

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

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

2018-03-01

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

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

DEFF Research Database (Denmark)

Thorn, Hrønn; Uhrenfeldt, Lisbeth

2017-01-01

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

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

Science.gov (United States)

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

2013-07-01

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

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

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

2015-01-01

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

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

NARCIS (Netherlands)

N.J.H. Raijmakers (Natasja)

2013-01-01

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

Family centred care before and during life-sustaining treatment withdrawal in intensive care: A survey of information provided to families by Australasian critical care nurses.

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Ranse, Kristen; Bloomer, Melissa; Coombs, Maureen; Endacott, Ruth

2016-11-01

A core component of family-centred nursing care during the provision of end-of-life care in intensive care settings is information sharing with families. Yet little is known about information provided in these circumstances. To identify information most frequently given by critical care nurses to families in preparation for and during withdrawal of life-sustaining treatment. An online cross-sectional survey. During May 2015, critical care nurses in Australia and New Zealand were invited to complete the Preparing Families for Treatment Withdrawal questionnaire. Data analysis included descriptive statistics to identify areas of information most and least frequently shared with families. Cross tabulations with demographic data were used to explore any associations in the data. From the responses of 159 critical care nurses, information related to the emotional care and support of the family was most frequently provided to families in preparation for and during withdrawal of life-sustaining treatment. Variation was noted in the frequency of provision of information across body systems and their associated physical changes during the dying process. Significant associations (p<0.05) were identified between the variables gender, nursing experience and critical care experiences and some of the information items most and least frequently provided. The provision of information during end-of-life care reflects a family-centred care approach by critical care nurses with information pertaining to emotional care and support of the family paramount. The findings of this study provide a useful framework for the development of interventions to improve practice and support nurses in communicating with families at this time. Copyright © 2016 Australian College of Critical Care Nurses Ltd. Published by Elsevier Ltd. All rights reserved.

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

Science.gov (United States)

Onibogi, Olanrewaju

2015-04-01

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

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

Science.gov (United States)

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

2014-01-01

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

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

NARCIS (Netherlands)

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

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

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

Science.gov (United States)

Maciejewski, Paul K.; Prigerson, Holly G.

2012-01-01

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

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

Science.gov (United States)

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

2015-12-01

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

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

Science.gov (United States)

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

2015-05-01

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

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

Science.gov (United States)

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

2017-02-02

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

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

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Keim-Malpass, Jessica; Lindley, Lisa C

2017-08-01

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

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

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

2017-01-01

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

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

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

2014-05-01

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

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

Directory of Open Access Journals (Sweden)

Kovačević Aleksandra

2015-01-01

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

Team Leadership and Cancer End-of-Life Decision Making.

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Waldfogel, Julie M; Battle, Dena J; Rosen, Michael; Knight, Louise; Saiki, Catherine B; Nesbit, Suzanne A; Cooper, Rhonda S; Browner, Ilene S; Hoofring, Laura H; Billing, Lynn S; Dy, Sydney M

2016-11-01

End-of-life decision making in cancer can be a complicated process. Patients and families encounter multiple providers throughout their cancer care. When the efforts of these providers are not well coordinated in teams, opportunities for high-quality, longitudinal goals of care discussions can be missed. This article reviews the case of a 55-year-old man with lung cancer, illustrating the barriers and missed opportunities for end-of-life decision making in his care through the lens of team leadership, a key principle in the science of teams. The challenges demonstrated in this case reflect the importance of the four functions of team leadership: information search and structuring, information use in problem solving, managing personnel resources, and managing material resources. Engaging in shared leadership of these four functions can help care providers improve their interactions with patients and families concerning end-of-life care decision making. This shared leadership can also produce a cohesive care plan that benefits from the expertise of the range of available providers while reflecting patient needs and preferences. Clinicians and researchers should consider the roles of team leadership functions and shared leadership in improving patient care when developing and studying models of cancer care delivery.

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

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

2007-01-01

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

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

OpenAIRE

Li, Li Bin

2013-01-01

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

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

Directory of Open Access Journals (Sweden)

Sedigheh Iranmanesh

2009-01-01

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

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

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

2017-08-24

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

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

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

2017-09-01

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

Hospital end-of-life care in haematological malignancies.

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

2018-02-06

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

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

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

2015-12-01

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

Networking to improve end of life care

Science.gov (United States)

2009-01-01

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

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

Science.gov (United States)

Seninger, Stephen; Smith, Dean G

2004-01-01

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

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

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

2013-03-01

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

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

Science.gov (United States)

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

2016-01-01

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

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

Science.gov (United States)

Csikai, Ellen L

2011-01-01

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

End of Life (Hospice Care)

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

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

NARCIS (Netherlands)

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

2014-01-01

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

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

Science.gov (United States)

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

2006-02-01

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

Economic impact analysis of an end-of-life programme for nursing home residents.

Science.gov (United States)

Teo, W-S Kelvin; Raj, Anusha Govinda; Tan, Woan Shin; Ng, Charis Wei Ling; Heng, Bee Hoon; Leong, Ian Yi-Onn

2014-05-01

Due to limited end-of-life discussions and the absence of palliative care, hospitalisations are frequent at the end of life among nursing home residents in Singapore, resulting in high health-care costs. Our objective was to evaluate the economic impact of Project Care at the End-of-Life for Residents in homes for the Elderly (CARE) programme on nursing home residents compared to usual end-of-life care. DESIGN AND SETTINGS/PARTICIPANTS: Project CARE was introduced in seven nursing homes to provide advance care planning and palliative care for residents identified to be at risk of dying within 1 year. The cases consisted of nursing home residents enrolled in the Project CARE programme for at least 3 months. A historical group of nursing home residents not in any end-of-life care programme was chosen as the matched controls. Cost differences between the two groups were analysed over the last 3 months and final month of life. The final sample comprised 48 Project CARE cases and 197 controls. Compared to the controls, the cases were older with more comorbidities and higher nursing needs. After risk adjustment, Project CARE cases demonstrated per-resident cost savings of SGD$7129 (confidence interval: SGD$4544-SGD$9714) over the last 3 months of life and SGD$3703 (confidence interval: SGD$1848-SGD$5557) over the last month of life (US$1 = SGD$1.3). This study demonstrated substantial savings associated with an end-of-life programme. With a significant proportion of the population in Singapore requiring nursing home care in the near future, these results could assist policymakers and health-care providers in decision-making on allocation of health-care resources.

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

International Nuclear Information System (INIS)

White, N.

2017-01-01

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

Retrospective studies of end-of-life resource utilization and costs in cancer care using health administrative data: a systematic review.

Science.gov (United States)

Langton, Julia M; Blanch, Bianca; Drew, Anna K; Haas, Marion; Ingham, Jane M; Pearson, Sallie-Anne

2014-12-01

There has been an increase in observational studies using health administrative data to examine the nature, quality, and costs of care at life's end, particularly in cancer care. To synthesize retrospective observational studies on resource utilization and/or costs at the end of life in cancer patients. We also examine the methods and outcomes of studies assessing the quality of end-of-life care. A systematic review according to PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) and AMSTAR (A Measurement Tool to Assess Systematic Reviews) methodology. We searched MEDLINE, Embase, CINAHL, and York Centre for Research and Dissemination (1990-2011). Independent reviewers screened abstracts of 14,424 articles, and 835 full-text manuscripts were further reviewed. Inclusion criteria were English-language; at least one resource utilization or cost outcome in adult cancer decedents with solid tumors; outcomes derived from health administrative data; and an exclusive end-of-life focus. We reviewed 78 studies examining end-of-life care in over 3.7 million cancer decedents; 33 were published since 2008. We observed exponential increases in service use and costs as death approached; hospital services being the main cost driver. Palliative services were relatively underutilized and associated with lower expenditures than hospital-based care. The 15 studies using quality indicators demonstrated that up to 38% of patients receive chemotherapy or life-sustaining treatments in the last month of life and up to 66% do not receive hospice/palliative services. Observational studies using health administrative data have the potential to drive evidence-based palliative care practice and policy. Further development of quality care markers will enhance benchmarking activities across health care jurisdictions, providers, and patient populations. © The Author(s) 2014.

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

NARCIS (Netherlands)

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

2017-01-01

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

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

Science.gov (United States)

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

2012-01-01

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

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

Science.gov (United States)

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

2012-03-01

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

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

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

2008-04-01

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

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

Directory of Open Access Journals (Sweden)

Shih-Chao Kang

2012-05-01

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

Nurses' knowledge of advance directives and perceived confidence in end-of-life care: a cross-sectional study in five countries.

LENUS (Irish Health Repository)

Coffey, Alice

2016-01-28

Nurses\\' knowledge regarding advance directives may affect their administration and completion in end-of-life care. Confidence among nurses is a barrier to the provision of quality end-of-life care. This study investigated nurses\\' knowledge of advance directives and perceived confidence in end-of-life care, in Hong Kong, Ireland, Israel, Italy and the USA using a cross-sectional descriptive design (n = 1089). In all countries, older nurses and those who had more professional experience felt more confident managing patients\\' symptoms at end-of-life and more comfortable stopping preventive medications at end-of-life. Nurses in the USA reported that they have more knowledge and experience of advance directives compared with other countries. In addition, they reported the highest levels of confidence and comfort in dealing with end-of-life care. Although legislation for advance directives does not yet exist in Ireland, nurses reported high levels of confidence in end-of-life care.

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

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

2009-01-01

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

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

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

2017-12-01

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

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

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

2011-02-01

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

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

Science.gov (United States)

2011-09-23

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

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

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

2013-03-01

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

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

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Martz, Kim; Morse, Janice M

2017-06-01

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

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

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

2012-09-01

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

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

NARCIS (Netherlands)

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

2017-01-01

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

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

Science.gov (United States)

Donley, Greer; Danis, Marion

2011-01-01

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

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

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

2016-04-01

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

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

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

2006-04-01

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

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

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

2004-02-01

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

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

OpenAIRE

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

2016-01-01

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

Japan's policy of promoting end-of-life care in nursing homes: impact on facility and resident characteristics associated with the site of death.

Science.gov (United States)

Ikegami, Naoki; Ikezaki, Sumie

2012-05-01

To evaluate the impact of the policy to encourage nursing homes to provide end-of-life care by comparing facility and resident variables associated with dying within the nursing home and not in hospitals, and by comparing life sustaining treatment (LST) respectively provided. Questionnaires mailed to an 11% random sample of 653 nursing homes in 2009. Facility characteristics from 371 nursing homes (57%) and resident characteristics of the 1158 who had been discharged due to death were obtained from 241 facilities (37%). Facility characteristics related to dying in nursing homes were their policy of providing end-of-life care and physicians being based in home care supporting clinics. Resident characteristics related were not having pneumonia as the cause of death, the family's preference of the nursing home as the site of death and agreement within the family. Preferences on the use of LST were adhered more in residents who had died in nursing homes. Although the percentage of residents dying within the facility has increased, the nursing home as a site of death still composes only 3.2% of the total. To increase the latter, nursing homes should refocus their function to providing end-of-life care to those not preferring aggressive treatment. Copyright © 2012 Elsevier Ireland Ltd. All rights reserved.

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

Science.gov (United States)

Allegretti, Joseph G.

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

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

Directory of Open Access Journals (Sweden)

Carey Candrian

2017-04-01

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

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

Science.gov (United States)

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

2016-01-01

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

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

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Weerasinghe, Swarna; Maddalena, Victor

2016-01-01

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

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

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

2017-05-01

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

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

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

2016-01-01

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

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

Directory of Open Access Journals (Sweden)

Almack Kathryn

2012-09-01

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

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

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

2017-02-23

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

Challenges in end-of-life communication.

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Galushko, Maren; Romotzky, Vanessa; Voltz, Raymond

2012-09-01

The purpose of this review is to give an overview of challenges that have been addressed in recent research in end-of-life communication. Diversity of difficulties that may occur in communication about end-of-life issues has been showed. The emotional quality of this communication requires special skills from professionals involved. Studies showed that physicians and medical students are often overstrained and avoid end-of-life discussions. Health professionals and patients are often ambivalent about end-of-life discussions. Nevertheless, professionals are expected to initiate these in an honest, needs-oriented way. Patient preferences are difficult to infer and have to be assessed explicitly and regularly. Studies showed that the emotional impact of end-of-life discussions can lead to a high burden or avoidance of professionals. Interdisciplinary, multi-professional work can support health professionals in end-of-life care but often structural barriers obstruct possible benefits. Health professionals need to initiate end-of-life communication in a sensitive way. Specific demands for health professionals in end-of-life communication are to differentiate own emotions and life events from those of patients and to deal with both adequately. Moreover, structural aspects can lead to difficulties between different specialties, professions and sectors, which can have a negative impact on adequate care for patient and relatives. Special efforts for improvement are needed.

Palliative sedation in end-of-life care.

Science.gov (United States)

Maltoni, Marco; Scarpi, Emanuela; Nanni, Oriana

2013-07-01

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

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

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

2012-01-01

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

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

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Li, Li Bin

2013-12-04

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

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

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

2017-10-01

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

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

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Müller-Busch, H Christof

2008-01-01

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

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

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

2012-01-01

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

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

NARCIS (Netherlands)

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

2012-01-01

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

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

OpenAIRE

Wackers, Ger

2016-01-01

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

[End of life and vulnerability, a public health issue].

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Boucomont, Aude

2016-02-01

End of life and precarity, two words which were linked by the French national observatory for end of life care in its work carried out in 2014. The study provided an overview of current support practices in different areas, highlighting certain lessons to be learned and making recommendations to the different partners involved. Copyright © 2015 Elsevier Masson SAS. All rights reserved.

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

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

2013-01-01

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

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

NARCIS (Netherlands)

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

2013-01-01

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

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

NARCIS (Netherlands)

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

2012-01-01

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

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

NARCIS (Netherlands)

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

2012-01-01

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

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

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

2012-05-17

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

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

Science.gov (United States)

Hastings, Kylie B

2014-02-01

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

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

Science.gov (United States)

Daydé, Marie-Claude

2016-02-01

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

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

Directory of Open Access Journals (Sweden)

Pool Robert

2011-06-01

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

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

Science.gov (United States)

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

2011-06-02

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

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

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

2012-09-01

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

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

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

2017-02-01

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

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

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

2006-09-01

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

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

Science.gov (United States)

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

2016-01-22

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

OA18 Population based end of life care - meeting the challenge of the ageing population.

Science.gov (United States)

Thomas, Keri

2015-04-01

The key challenge for most developed countries is meeting the needs of our ageing population, in particular, those nearing the end of their lives - population-based end-of-life care. Building on a public health approach to meet needs of an area-wide population, and a practical approach of enabling generalist frontline staff care for all people in a variety of settings using the GSF Quality Improvement Programmes, we describe progress in a few GSF Cross-Boundary Care Foundation Sites taking a population-based view to meet the challenges of the ageing population. Taking a whole-system view, we explore ways to ensure all people receive quality care towards the final stages of life in line with their needs and wishes in a way that is cost-effective, responsive and compassionate. Expanding concepts of palliative/end-of-life care to include care for people with long-term conditions, dementia, and frailty. We describe practical progress in a number of GSF XBC Sites, enabling generalist frontline staff including: Identifying and prioritising people earlier Reducing 'diagnostic apartheid' Enabling more to live well and die well in the place and manner of their choosing Encouraging integrated person-centred care, reducing inappropriate over-Hospitalisation and prevention of over - medicalising. Use of GSF in various settings to enable generalist frontline staff is described, with key outcome measures and evaluations in the UK, and internationally. As the population ages, population-based end of life care will be one of the most significant developments to meet the challenges for a fit-for-purpose health service of the future. © 2015, Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

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

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

2011-04-01

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

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

Science.gov (United States)

American Association of Colleges of Nursing, Washington, DC.

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

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

Science.gov (United States)

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

2016-01-01

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

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

Science.gov (United States)

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

2016-05-01

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

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

Science.gov (United States)

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

2016-09-01

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