Perceptions of Bereaved Caregivers and Clinicians About End-of-Life Care for Patients With Destination Therapy Left Ventricular Assist Devices.

Background Patients with left ventricular assist devices (LVADs) implanted as destination therapy may receive suboptimal preparation for and care at the end of life, but there is limited understanding of the reasons for these shortcomings. Exploring perceptions of individuals (caregivers and clinicians) who are closely involved in the end-of-life experience with patients with destination therapy LVADs can help identify key opportunities for improving care. Methods and Results We conducted semistructured qualitative interviews with 7 bereaved caregivers of patients with destination therapy LVADs and 10 interdisciplinary LVAD clinicians. Interviews explored perceptions of preparing for end of life, communicating about end of life, and providing and receiving end-of-life care, and were analyzed using a 2-step team-based inductive approach to coding and analysis. Six themes pertaining to end-of-life experiences were derived: (1) timing end-of-life discussions in the setting of unpredictable illness trajectories, (2) prioritizing end-of-life preparation and decision-making, (3) communicating uncertainty while providing support and hope, (4) lack of consensus on responsibility for end-of-life discussions, (5) perception of the LVAD team as invincible, and (6) divergent perceptions of LVAD withdrawal. Conclusions This study revealed 6 unique aspects of end-of-life care for patients with destination therapy LVADs as reported by clinicians and caregivers. Themes coalesced around communication, team-based care, and challenges unique to patients with LVADs at end of life. Programmatic changes may address some aspects, including training clinicians in LVAD-specific communication skills. Other aspects, such as standardizing the role of the palliative care team and developing practical interventions that enable timely advance care planning during LVAD care, will require multifaceted interventions.

Aspectos bioéticos dos cuidados em saúde às pessoas idosas ao fim da vida / Bioethical aspects of health care provided to older adults at the end of their lives / Aspectos bioéticos de los cuidados de salud a adultos mayores en el final de la vida

Objetivo: analisar a produção científica nacional e internacional, buscando as interfaces existentes entre os princípios bioéticos e os cuidados em saúde prestados ao fim da vida às pessoas idosas. Método: revisão integrativa, cuja busca ocorreu entre outubro e novembro de 2019 nas bases de dados Medline via Pubmed, Lilacs e Scopus com os descritores: "Palliative Care", "Aged" e "Bioethics" de 2014-2019. Resultados: a partir dos artigos selecionados, emergiram as seguintes categorias: condutas terapêuticas frente aos cuidados ao fim da vida; tomada de decisão nos cuidados ao fim da vida; e desafios nos cuidados ao fim da vida. Conclusão: destaca-se a relevância dos profissionais manterem o compromisso com a pessoa idosa e sua família de forma a considerar suas subjetividades e preferências e os instrumentalizar para que os cuidados sejam pautados em princípios bioéticos, para assim proporcionar um processo de morte e de morrer com dignidade.

Objective: to examine the Brazilian and international scientific production for connections between bioethical principles and the health care provided to older adults at the end of their lives. Method: between October and November 2019 this integrative review searched the Medline (Pubmed), Lilacs, and Scopus databases using the descriptors: "Palliative Care", "Aged", and "Bioethics" for the period 2014-2019. Results: the following categories emerged from the selected articles: therapeutic conducted with regard to end-of-life care; decision making on end-of-life care; and challenges in end-of-life care. Conclusion: of particular importance is for health professionals to uphold their commitment to older adults and their families, consider their subjectivities and preferences, and empower and equip them so that care is guided by bioethical principles in order to assure a dignified process of dying and death.

Objetivo: examinar la producción científica brasileña e internacional en busca de conexiones entre los principios bioéticos y la atención médica brindada a los adultos mayores al final de sus vidas. Método: entre octubre y noviembre de 2019, esta revisión integradora buscó en las bases de datos Medline (Pubmed), Lilacs y Scopus utilizando los descriptores: "Cuidados paliativos", "Envejecido" y "Bioética" para el período 2014-2019. Resultados: las siguientes categorías surgieron de los artículos seleccionados: terapéutico realizado con respecto a la atención al final de la vida; toma de decisiones sobre la atención al final de la vida; y desafíos en la atención al final de la vida. Conclusión: es de particular importancia que los profesionales de la salud mantengan su compromiso con los adultos mayores y sus familias, consideren sus subjetividades y preferencias, y los empoderen y equipen para que la atención se guíe por principios bioéticos para asegurar un proceso digno de muerte y muerte.

Implementation of a Perinatal Hospice Program.

BACKGROUND: In 2017, the Nebraska Unicameral passed legislative bill 506, which required physicians to inform patients carrying fetuses diagnosed with a life-limiting anomaly of the option to enroll in a comprehensive perinatal hospice program. The bill also required the Department of Health & Human Services to provide information about statewide hospice programs. Families enrolled in hospice programs are better prepared for the birth and death of their child. This large academic medical center was listed on the registry but did not have a formal perinatal hospice program. PURPOSE: Implementation of a comprehensive perinatal hospice program. METHODS: The program was designed and implemented, beginning with the formation of an interdisciplinary team. Guidelines were developed for program referral, care conferences, team communication, and family follow-up. The team was educated. Electronic record documentation and order set were implemented. A data collection process was developed to track referrals and critical data points. RESULTS: The perinatal hospice program has been accepting referrals but has not had any qualifying referrals. IMPLICATIONS FOR PRACTICE: The development of an evidence-based guideline for referral that can improve referral consistency. While trisomy 13 and 18 diagnosis was historically considered life-limiting, these families now have the option of full intervention and transfer for specialists. IMPLICATIONS FOR RESEARCH: Future research will include collecting data from patients who could have benefited from hospice, including infants who were born 20 to 22 weeks, or for maternal reasons. Future research will evaluate the experience after bereavement, the hospice team's experience, and the effectiveness of the referral process.

Which Ethical Considerations Should Inform Hospice Decisions About Caring for Patients With Obesity?

Hospice and palliative care clinicians have the potential to advocate for high-quality medical care for patients with obesity. This article explores current evidence on obesity at the end of life and ethical questions that emerge when a decision is made to enroll a patient with obesity in hospice.

The ethics of concurrent care for children: A social justice perspective.

Recent estimates indicate that over 40,000 children die annually in the United States and a majority have life-limiting conditions. Children at end of life require extensive healthcare resources, including multiple hospital readmissions and emergency room visits. Yet, many children still suffer from symptoms at end of life-including fatigue, pain, dyspnea, and anxiety-with less than 10% of these children utilizing hospice care services. A critical barrier to pediatric hospice use was the original federal regulations associated with the hospice care that required a diagnosis of 6 months to live and the discontinuation of all curative treatments. The Concurrent Care Provision of the United States' Affordable Care Act eliminated the need to forgo curative therapies in order to enroll in hospice for children in Medicaid or Children's Health Insurance Program. Concurrent care for children can help mitigate the tension families experience in choosing between essential forms of care, as well as contribute to improved end-of-life outcomes for the child and possibly bereavement outcomes for the family. Understanding concurrent care for children from a social justice perspective has important advocacy and research implications for hospice and palliative care clinicians providing care for children and their families. We apply Powers and Faden's theory of social justice "as the moral foundation of public health and health policy" to the provision of concurrent care to children near end of life and families in the United States. The goals of applying this theory are to explore additional insights and perspectives into concurrent care policy may provide and to assess the usefulness of this theory when applied to end-of-life health policy. We argue that concurrent care policy is socially just since it has potential to promote well-being in vulnerable children and families and can limit the inequity children at end-of-life experience in access to high-quality hospice care.

Physicians' Professionally Responsible Power: A Core Concept of Clinical Ethics.

The gathering of power unto themselves by physicians, a process supported by evidence-based practice, clinical guidelines, licensure, organizational culture, and other social factors, makes the ethics of power--the legitimation of physicians' power--a core concept of clinical ethics. In the absence of legitimation, the physician's power over patients becomes problematic, even predatory. As has occurred in previous issues of the Journal, the papers in the 2016 clinical ethics issue bear on the professionally responsible deployment of power by physicians. This introduction explores themes of physicians' power in papers from an international group of authors who address autonomy and trust, the virtues of perinatal hospice, conjoined twins in ethics and law, addiction and autonomy in clinical research on addicting substances, euthanasia of patients with dementia in Belgium, and a pragmatic approach to clinical futility.

Hospice and palliation in the English-speaking Caribbean.

This article presents empirical data on the limited availability of hospice and palliative care to the 6 million people of the English-speaking Caribbean. Ten of the 13 nations therein responded to a survey and reported employing a total of 6 hospice or palliative specialists, and having a total of 15 related facilities. The evolving socioeconomic and cultural context in these nations bears on the availability of such care, and on the willingness to report, assess, and prioritize pain, and to prescribe opiates for pain. Socioeconomics and culture also impinge on what medications and modalities of care are routinely available for pain or other conditions and can challenge professionalism, empathy, and responsiveness to patients' unrelieved pain. Although all respondents report having a protocol for pain management, hospice, or end-of-life care, their annual medical use of opiates is well below the global mean. The International Narcotics Control Board (INCB), which monitors such use, encourages Caribbean and other low- and middle-income countries to increase their use of opiates to treat pain, and to overcome both unfounded fears of addiction and overly restrictive interpretation of related laws and regulations. Contextual considerations like those described here are important to the success of policies and capacity-building programs aiming to increase access to hospice and palliation, and perhaps to improving other aspects of health and healthcare. Exploring and responding to the realities of socioeconomic and cultural conditions will enhance public and policy dialogue and improve the design of interventions to increase access to palliative and hospice care. Improving access to palliative and hospice care in the Caribbean demonstrates beneficence and helps to fulfill human rights conventions.

Palliative sedation versus euthanasia: an ethical assessment.

The aim of this article was to review the ethical debate concerning palliative sedation. Although recent guidelines articulate the differences between palliative sedation and euthanasia, the ethical controversies remain. The dominant view is that euthanasia and palliative sedation are morally distinct practices. However, ambiguous moral experiences and considerable practice variation call this view into question. When heterogeneous sedative practices are all labeled as palliative sedation, there is the risk that palliative sedation is expanded to include practices that are actually intended to bring about the patients' death. This troublesome expansion is fostered by an expansive use of the concept of intention such that this decisive ethical concept is no longer restricted to signify the aim in guiding the action. In this article, it is argued that intention should be used in a restricted way. The significance of intention is related to other ethical parameters to demarcate the practice of palliative sedation: terminality, refractory symptoms, proportionality, and separation from other end-of-life decisions. These additional parameters, although not without ethical and practical problems, together formulate a framework to ethically distinguish a more narrowly defined practice of palliative sedation from practices that are tantamount to euthanasia. Finally, the article raises the question as to what impact palliative sedation might have on the practice of palliative care itself. The increasing interest in palliative sedation may reemphasize characteristics of health care that initially encouraged the emergence of palliative care in the first place: the focus on therapy rather than care, the physical dimension rather than the whole person, the individual rather than the community, and the primacy of intervention rather than receptiveness and presence.

Ethical challenges in advanced heart failure.

PURPOSE OF REVIEW: Advanced heart failure (AHF) is an increasingly important field. Both the population of AHF patients and the therapeutic and diagnostic interventions available are expanding, creating a host of difficult ethical challenges. This article discusses these important issues and proposes an approach to caring for AHF patients. RECENT FINDINGS: Recent guidelines and clinical trials describe the benefits of costly and invasive therapies for AHF, such as ventricular assist devices and cardiac resynchronization therapy which prolong life and improve symptoms but may create burdens and conflict over deactivation at the end of life. Prognostication, informed consent, and early involvement of palliative care are central to addressing the decision-making challenges raised by these devices. Societal concerns such as cost-effectiveness and distributive justice will play an increasingly important role in the dissemination of these devices. SUMMARY: More research, increased end-of-life education, emphasis on advance directives, a more comprehensive informed consent process, and a true multidisciplinary approach are needed to provide optimal care for patients with AHF.

Palliative care for the terminally ill in America: the consideration of QALYs, costs, and ethical issues.

The drive for cost-effective use of medical interventions has advantages, but can also be challenging in the context of end-of-life palliative treatments. A quality-adjusted life-year (QALY) provides a common currency to assess the extent of the benefits gained from a variety of interventions in terms of health-related quality of life and survival for the patient. However, since it is in the nature of end-of-life palliative care that the benefits it brings to its patients are of short duration, it fares poorly under a policy of QALY-maximization. Nevertheless, we argue that the goals of palliative care and QALY are not incompatible, and optimal integration of palliative care into the calculation of QALY may reveal a mechanism to modify considerations of how optimal quality of life can be achieved, even in the face of terminal illness. The use of QALYs in resource allocation means that palliative care will always compete with alternative uses of the same money. More research should be conducted to evaluate choices between palliative care and more aggressive therapies for the terminally ill. However, current limited data show that investing in palliative care makes more sense not only ethically, but also financially.

When to say "yes" and when to say "no": boundary issues for hospice palliative care volunteers.

A total of 79 hospice palliative care volunteers from 2 community-based hospice programs responded to a 27-item Boundary Issues Questionnaire that was specifically developed for this study. Volunteers were asked to indicate whether or not they considered each item (eg, "Lend personal belongings to a patient or family," "Agree to be a patient's power of attorney," "Attend/go into a patient's medical appointment") to be something they should not do and to indicate whether or not they have ever done it. On the basis of the volunteers' responses, the authors distinguished between "definite boundary issues" (things volunteers should never do, for example, "Accept money from a patient or family"), "potential boundary issues" (things volunteers should stop and think twice about doing, for example, "Accept a gift from a patient or family"), and "questionable boundary issues" (things volunteers should be aware of doing, for example, "Give your home phone number to a patient or family"). The implications of these findings for training volunteers are discussed and the need for clear and unambiguous organizational policies and procedures to preserve boundaries is stressed. Without clear policies, etc, community-based hospice programs may be putting themselves at legal risk.

Unlocking the closed door: arguments for open access hospice.

The traditional view of standard hospice (SH) care is that once begun, the doorway toward curative and other forms of nonpalliative treatment is irrevocably locked. We will argue that such a traditional view needs to be reassessed in light of new arguments and data regarding access to these avenues of treatment. We will argue that patients should be supported in their transition from SH to open access hospice (OAH). Open access hospice should be available to all patients because of ethical arguments, patient satisfaction arguments, and costs of care arguments. More randomized controlled research trials need to be performed to study the impact of OAH versus SH. This research should focus on patient satisfaction, cost, and survival.

Moving beyond the anecdotal. Identifying the need for evidence-based research in hospice and palliative care.

The paucity of research in hospice and palliative care has resulted in the absence of a sound, scientific foundation for clinical practice. Most clinical practice performed in this area has not received systematic evaluation and therefore lacks scientific credibility. Many barriers exist, however, that present unique challenges for research with patients and families who have life-limiting illness. Evaluation of key components for the successful performance of interdisciplinary research and integration in clinical settings are explored.