Supported Privacy: An Essential Principle for End-of-Life Care for Children and Families in the PICU.

Caring for children and their families at the end-of-life is an essential but challenging aspect of care in the PICU. During and following a child's death, families often report a simultaneous need for protected privacy and ongoing supportive presence from staff. Balancing these seemingly paradoxical needs can be difficult for PICU staff and can often lead to the family feeling intruded upon or abandoned during their end-of-life experience. In this "Pediatric Critical Care Medicine Perspectives" piece, we reframe provision of privacy at the end-of-life in the PICU and describe an essential principle that aims to help the interprofessional PICU team simultaneously meet these two opposing family needs: "Supported Privacy." In addition, we offer concrete recommendations to actualize "Supported Privacy" in the PICU, focusing on environmental considerations, practical needs, and emotional responses. By incorporating the principles of "Supported Privacy" into end-of-life care practices, clinicians can support the delivery of high-quality care that meets the needs of children and families navigating the challenges and supports of end-of-life in the PICU.

Euthanasia and End-of-Life Decisions: From the Empirical Turn to Moral Intuitionism.

Most medical learned societies have endorsed both "equivalence" between all forms of withholding or withdrawing treatment and the "discontinuity" between euthanasia and practices to withhold or withdraw treatment. While the latter are morally acceptable insofar as they consist in letting the patient die, the former constitutes an illegitimate act of actively interfering with a patient's life. The moral distinction between killing and letting die has been hotly debated both conceptually and empirically, most notably by experimental philosophers, with inconclusive results. This article employs a "revisionary" intuititionist perspective to discuss the results of a clinical ethics study about intensivists' perceptions of withhold or withdraw decisions. The results show that practitioners' moral experience is at odds with both the discontinuity and equivalence theses. This outcome allows us to revisit certain concepts, such as intention and causal relationship, that are prominent in the conceptual debate. Intensivists also regard end-of-life decisions as being on a scale from least to most active, and whether they regard active forms of end-of-life decisions as ethically acceptable depends on the overarching professional values they endorse: the patient's best chances of survival, or the patient's quality of life.

Creating a safer and better functioning system: Lessons to be learned from the Netherlands for an ethical defence of an autonomy-only approach to assisted dying.

The proposal to allow assisted dying for people who are not severely ill reignited the Dutch end-of-life debate when it was submitted in 2016. A key criticism of this proposal is that it is too radical a departure from the safe and well-functioning system the Netherlands already has. The goal of this article is to respond to this criticism and question whether the Dutch system really can be described as safe and well functioning. I will reconsider the usefulness of the suffering criterion, and I will ultimately argue this criterion should be rejected altogether. Instead, we should consider moving towards an autonomy-only approach to assisted dying. This would resolve some significant issues occurring under the current system of assisted dying in the Netherlands and ultimately make the process safer and better functioning. I will then consider some possible objections to adopting an autonomy-only approach and provide some preliminary responses to these also. I will finally highlight some potential areas where further research may be necessary, namely, how to mitigate the effect of external factors such as poverty or other life aspects that may have the potential to distort the individual's ability to make autonomous decisions. I will also consider some possible international lessons that can be taken from both current as well as the proposed practice in the Netherlands.

What helps or hinders effective end-of-life care in adult intensive care units in Middle Eastern countries? A systematic review.

BACKGROUND: As many patients are spending their last days in critical care units, it is essential that they receive appropriate end-of -life care. However, cultural differences, ethical dilemmas and preference practices can arise in the intensive care settings during the end of life. Limiting therapy for dying patients in intensive care is a new concept with no legal definition and therefore there may be confusion in interpreting the terms 'no resuscitation' and 'comfort care' among physicians in Middle East. Therefore, the research question is 'What helps or hinders effective end-of-life care in adult intensive care units in Middle Eastern countries?' METHODS: The authors conducted a comprehensive systematic literature review using five electronic databases. We identified primary studies from Medline, Embase, CINAHL, Psycinfo and Scopus. The team assessed the full-text papers included in the review for quality using the Joanna Briggs Institute checklist (JBI). We completed the literature search on the first of April 2022 and was not limited to a specific period. RESULTS: We identified and included nine relevant studies in the review. We identified five main themes as end-of-life care challenges and/or facilitators: organisational structure and management, (mis)understanding of end-of-life care, spirituality and religious practices for the dying, communication about end-of-life care, and the impact of the ICU environment. CONCLUSIONS: This review has reported challenges and facilitators to providing end-of-life care in ICU and made initial recommendations for improving practice. These are certainly not unique to the Middle East but can be found throughout the international literature. However, the cultural context of Middle East and North Africa countries gives these areas of practice special challenges and opportunities. Further observational research is recommended to confirm or modify the results of this review, and with a view to developing and evaluating comprehensive interventions to promote end-of-life care in ICUs in the Middle East.

Issues and implications of the life-sustaining treatment decision act: comparing the data from the survey and clinical data of inpatients at the end-of-life process.

BACKGROUND: Health professionals had difficulty choosing the right time to discuss life-sustaining treatments (LSTs) since the Korean Act was passed in 2018. OBJECTIVE: This study aimed to understand how patients decide to undergo LSTs in clinical practice and to compare the perceptions of these decisions among health professionals, patients, and families with suggestions to support the self-directed decisions of patients. RESEARCH DESIGN: A retrospective observational study with electronic medical records (EMRs) and a descriptive survey was used. METHODS: The data obtained from the EMRs included all adult patients who died in end-of-life care at a university hospital in 2021. We also conducted a survey of 214 health professionals and 100 patients and their families (CNUH IRB approval no. 2022-07-006). RESULTS: Based on the EMR data of 916 patients in end-of-life care, 78.4% signed do-not-attempt-resuscitation consents, 5.6% completed the documents for LSTs, and 10.2% completed both forms. LST decisions were mostly made by family members (81.5%). Most survey participants agreed that meaningless LSTs should be suspended, and the decision should be made by patients. Patients and family members (42-56%) and health professionals (56-58%) recommended discussing LST suspension when the patient is still conscious but with predicted deterioration of their condition. The suffering experienced by the patient was considered to be a priority by most patients (58%) and families (54%) during the decision-making process, while health professionals considered "the possibility of the patient's recovery" to be the highest priority (43-55%). CONCLUSIONS: There is still a significant discrepancy in the perceptions of LST decisions among health professionals, patients, and their families despite high awareness of the Act. This situation makes it challenging to implement the Act to ensure respect for the rights of patients to self-determination and dignified end-of-life. Further effort is needed to improve the awareness of LSTs and to clarify the ambiguity of document preparation timing.

Urban people's preferences for life-sustaining treatment or artificial nutrition and hydration in advance decisions.

BACKGROUND: The Patient Right to Autonomy Act (PRAA), implemented in Taiwan in 2019, enables the creation of advance decisions (AD) through advance care planning (ACP). This legal framework allows for the withholding and withdrawal of life-sustaining treatment (LST) or artificial nutrition and hydration (ANH) in situations like irreversible coma, vegetative state, severe dementia, or unbearable pain. This study aims to investigate preferences for LST or ANH across various clinical conditions, variations in participant preferences, and factors influencing these preferences among urban residents. METHODS: Employing a survey of legally structured AD documents and convenience sampling for data collection, individuals were enlisted from Taipei City Hospital, serving as the primary trial and demonstration facility for ACP in Taiwan since the commencement of the PRAA in its inaugural year. The study examined ADs and ACP consultation records, documenting gender, age, welfare entitlement, disease conditions, family caregiving experience, location of ACP consultation, participation of second-degree relatives, and the intention to participate in ACP. RESULTS: Data from 2337 participants were extracted from electronic records. There was high consistency in the willingness to refuse LST and ANH, with significant differences noted between terminal diseases and extremely severe dementia. Additionally, ANH was widely accepted as a time-limited treatment, and there was a prevalent trend of authorizing a health care agent (HCA) to make decisions on behalf of participants. Gender differences were observed, with females more inclined to decline LST and ANH, while males tended towards accepting full or time-limited treatment. Age also played a role, with younger participants more open to treatment and authorizing HCA, and older participants more prone to refusal. CONCLUSION: Diverse preferences in LST and ANH were shaped by the public's current understanding of different clinical states, gender, age, and cultural factors. Our study reveals nuanced end-of-life preferences, evolving ADs, and socio-demographic influences. Further research could explore evolving preferences over time and healthcare professionals' perspectives on LST and ANH decisions for neurological patients..

Nurses' experiences of ethical challenges concerning thirst in dying patients in specialist palliative care: a qualitative study.

AIM: To describe nurses' experiences of ethical challenges in relation to thirst in terminally ill patients in specialist palliative care units. RESEARCH DESIGN: A qualitative, reflexive thematic design with an inductive analysis was used. PARTICIPANTS AND RESEARCH CONTEXT: Eighteen qualitative interviews with nurses working in six different specialist palliative care units in different hospitals in Sweden were conducted. The interviews were transcribed verbatim and analysed with a reflexive thematic analysis. RESULTS: This study identified four themes that reflect ethical challenges experienced by nurses in the palliative care regarding thirst: Harmful infusions interfere with peaceful dying; conflict between tradition and personal experience; What is the right intervention to quench thirst? and; Lack of standard procedures, competence and interest among team members. CONCLUSION: Palliative care nurses experience a number ethical challenges in relation to thirst in dying patients. The main challenge is the provision of fluids to dying patients via artificial infusions, which nurses struggle with, as they do not want to interfere with a peaceful dying process.

Physicians' experiences and perceptions about withholding and withdrawal life-sustaining treatment in Chiang Mai University Hospital: a cross-sectional study.

BACKGROUND: Withholding or withdrawing life-sustaining treatment in end-of-life patients is a challenging ethical issue faced by physicians. Understanding physicians' experiences and factors influencing their decisions can lead to improvement in end-of-life care. OBJECTIVES: To investigate the experiences of Thai physicians when making decisions regarding the withholding or withdrawal of life-sustaining treatments in end-of-life situations. Additionally, the study aims to assess the consensus among physicians regarding the factors that influence these decisions and to explore the influence of families or surrogates on the decision-making process of physicians, utilizing case-based surveys. METHODS: A web-based survey was conducted among physicians practicing in Chiang Mai University Hospital (June - October 2022). RESULTS: Among 251 physicians (response rate 38.3%), most of the respondents (60.6%) reported that they experienced withholding or withdrawal treatment in end-of-life patients. Factors that influence their decision-making include patient's preferences (100%), prognosis (93.4%), patients' quality of life (92.8%), treatment burden (89.5%), and families' request (87.5%). For a chronic disease with comatose condition, the majority of the physicians (47%) chose to continue treatments, including cardiopulmonary resuscitation (CPR). In contrast, only 2 physicians (0.8%) would do everything, in cases when families or surrogates insisted on stopping the treatment. This increased to 78.1% if the families insisted on continuing treatment. CONCLUSION: Withholding and withdrawal of life-sustaining treatments are common in Thailand. The key factors influencing their decision-making process included patient's preferences and medical conditions and families' requests. Effective communication and early engagement in advanced care planning between physicians, patients, and families empower them to align treatment choices with personal values.

[Implantable automatic defibrillators and their deactivation, a necessary conversation. Literature review]. / Desfibriladores automáticos implantables y su desactivación, una conversación necesaria. Revisión de la literatura y propuesta multidisciplinaria.

The use of implantable cardioverter-defibrillators (ICDs) has been on the rise. Patients using ICDs inevitably transit towards the end of life at some point, including some who develop terminal illnesses. In this context, it is relevant to discuss and evaluate the deactivation of these devices with the aim of addressing patients' comfort and avoiding shocks during the end-of-life phase. There are multiple communicational and operational barriers when considering ICDs deactivation. Firstly, many patients have not discussed this issue with their physicians despite international guidelines recommending such discussions before device installation. Secondly, there is a significant lack of knowledge among patients, family members, and even doctors about the benefits of ICDs, as well as the deactivation process and ethics considerations, which leads them to believe that immediate death will occur, considering it as euthanasia or assisted suicide. Finally, the management of hospice patients or end-of-life ICDs users is poorly standardized, with low rates of deactivation, resulting in shocks in the last minutes of life, which can cause marked distress to patients and families. It is necessary to address these barriers and discuss these issues with patients to inform and educate them about the functioning of their devices, with the ultimate goal of enabling informed and shared decision-making for patient well-being.

Intensive neurorehabilitation for patients with prolonged disorders of consciousness: protocol of a mixed-methods study focusing on outcomes, ethics and impact.

BACKGROUND: Prolonged disorders of consciousness (PDOC) are amongst the severest sequelae of acquired brain injury. Evidence regarding epidemiology and rehabilitation outcomes is scarce. These knowledge gaps and psychological distress in families of PDOC patients may complicate clinical decision-making. The complex PDOC care and associated moral dilemmas result in high workload in healthcare professionals. Since 2019, all PDOC patients in the Netherlands have access to intensive neurorehabilitation up to 2 years post-injury provided by one rehabilitation center and four specialized nursing homes. Systematic monitoring of quantitative rehabilitation data within this novel chain of care is done in a study called DOCTOR. The optimization of tailored PDOC care, however, demands a better understanding of the impact of PDOC on patients, their families and healthcare professionals and their views on rehabilitation outcomes, end-of-life decisions and quality of dying. The True Outcomes of PDOC (TOPDOC) study aims to gain insight in the qualitative outcomes of PDOC rehabilitation and impact of PDOC on patients, their families and healthcare professionals. METHODS: Nationwide multicenter prospective cohort study in the settings of early and prolonged intensive neurorehabilitation with a two-year follow-up period, involving three study populations: PDOC patients > 16 years, patients' family members and healthcare professionals involved in PDOC care. Families' and healthcare professionals' views on quality of rehabilitation outcomes, end-of-life decisions and dying will be qualitatively assessed using comprehensive questionnaires and in-depth interviews. Ethical dilemmas will be explored by studying moral deliberations. The impact of providing care to PDOC patients on healthcare professionals will be studied in focus groups. DISCUSSION: To our knowledge, this is the first nationwide study exploring quality of outcomes, end-of-life decisions and dying in PDOC patients and the impact of PDOC in a novel chain of care spanning the first 24 months post-injury in specialized rehabilitation and nursing home settings. Newly acquired knowledge in TOPDOC concerning quality of outcomes in PDOC rehabilitation, ethical aspects and the impact of PDOC will enrich quantitative epidemiological knowledge and outcomes arising from DOCTOR. Together, these projects will contribute to the optimization of centralized PDOC care providing support to PDOC patients, families and healthcare professionals.

Rapid review of decision-making for place of care and death in older people: lessons for COVID-19.

INTRODUCTION: The coronavirus pandemic (COVID-19) has affected the functioning and capacity of healthcare systems worldwide. COVID-19 has also disproportionately affected older adults. In the context of COVID-19, decision-making surrounding place of care (PoC) and place of death (PoD) in older adults involves significant new challenges. AIMS: To explore key factors that influence PoC and PoD decisions in older adults. A secondary aim was to investigate key factors that influence the process and outcome of these decisions in older adults. To apply findings from current evidence to the context of COVID-19. METHODS: Rapid review of reviews, undertaken using WHO guidance for rapid reviews for the production of actionable evidence. Data extracted was synthesised using narrative synthesis, with thematic analysis and tabulation. RESULTS: 10 papers were included for full data extraction. These papers were published between 2005 and 2020. Papers included discussed actual PoD, as well as preferred. Results were divided into papers that explored the process of decision-making, and those that explored decision-making outcomes. CONCLUSIONS: The process and outcomes of decision-making for older people are affected by many factors-all of which have the potential to influence both patients and caregivers experience of illness and dying. Within the context of COVID-19, such decisions may have to be made rapidly and be reflexive to changing needs of systems and of families and patients.

Dying well in nursing homes during COVID-19 and beyond: The need for a relational and familial ethic.

This paper applies a relational and familial ethic to address concerns relating to nursing home deaths and advance care planning during Covid-19 and beyond. The deaths of our elderly in nursing homes during this pandemic have been made more complicated by the restriction of visitors even at the end of life, a time when families would normally be present. While we must be vigilant about preventing unnecessary deaths caused by coronavirus outbreaks in nursing homes, some deaths of our elders are inevitable. Thus, it is essential that advanced care planning occurs in a way that upholds the familial and relational aspects of elders' lives that often matter to them the most. We invoke concepts from feminist ethicists like Hilde Lindemann and Eva Kittay and introduce Avery Weisman and Thomas Hackett's concept of "appropriate death" to suggest better ways of planning for those deaths of our elderly that cannot be avoided. Our hope is to allow for deaths that are as meaningful as possible for both the elderly and the family members who survive them.

Reframing the meaning of life and professional values: A theoretical framework of facilitating professional care for terminally ill patients.

Professional values reflect nurses' understanding of how to deliver professional care, which might influence nurses' attitudes and caring behaviors during end-of-life care. However, limited research has been conducted to explore nurses' experiences of professional development during end-of-life care, and theoretical explanations are scarce about how nurses enact their professional values during the caring process. This study explored the social process of professional values involved in end-of-life care in the Chinese cultural context by adopting a constructivist grounded theory approach. Twenty semi-structured in-depth interviews with 15 nurses from three hospitals in southeastern China were conducted. A theoretical framework emerged when focusing on the social process of "reframing the meaning of life and professional values" to facilitate professional care for terminally ill patients. Three main categories were sequentially identified as "recognizing the dilemmas when caring for terminally ill patients," "applying strategies to deal with values conflict," and "reconstructing values." This theoretical framework may be applied as a practical framework for equipping nurses with effective strategies to cultivate professional values, including the provision of adequate end-of-life knowledge, and a supportive workplace environment.

Ethical conflict during COVID-19 pandemic: the case of Spanish and Italian intensive care units.

AIM: To identify factors underlying ethical conflict occurring during the current COVID-19 pandemic in the critical care setting. BACKGROUND: During the first wave of the COVID-19 outbreak, Spanish and Italian intensive care units were overwhelmed by the demand for admissions. This fact revealed a crucial problem of shortage of health resources and rendered that decision-making was highly complex. SOURCES OF EVIDENCE: Applying a nominal group technique this manuscript identifies a series of factors that may have played a role in the emergence of the ethical conflicts in critical care units during the COVID-19 pandemic, considering ethical principles and responsibilities included in the International Council of Nurses Code of Ethics. The five factors identified were the availability of resources; the protection of healthcare workers; the circumstances surrounding decision-making, end-of-life care, and communication. DISCUSSION: The impact of COVID-19 on health care will be long-lasting and nurses are playing a central role in overcoming this crisis. Identifying these five factors and the conflicts that have arisen during the COVID-19 pandemic can help to guide future policies and research. CONCLUSIONS: Understanding these five factors and recognizing the conflicts, they may create can help to focus our efforts on minimizing the impact of the ethical consequences of a crisis of this magnitude and on developing new plans and guidelines for future pandemics. IMPLICATIONS FOR NURSING PRACTICE AND POLICY: Learning more about these factors can help nurses, other health professionals, and policymakers to focus their efforts on minimizing the impact of the ethical consequences of a crisis of this scale. This will enable changes in organizational policies, improvement in clinical competencies, and development of the scope of practice.

Decisional Capacity Determination In Patients With Cancer.

Patients with cancer face many difficult decisions and encounter many clinical situations that undermine decisional capacity. For this reason, assessing decision-making capacity should be thought of at every medical encounter. The culmination of variable disease trajectories, following patients to the end of life, use of high-risk treatments, and other weighty personal decisions require attention to patients' ability to engage in decisions. Oncologists develop meaningful relationships with their patients. This familiarity may lead to forgoing the process of diligently assessing a patient's cognitive ability and/or decisional capacity when important decisions need to be made. While the process may feel like it takes place spontaneously, many subtle and overt details are involved with the decisions around cancer care that require pointed questioning and probing. Thus, there are many ways to fall short in determining decisional capacity. Clinicians are inconsistent in their decisional capacity determinations and generally assume more decisional capacity than the patient has. Consult and referral services such as ethics and psychiatry can help with treatment decisions and with assessing underlying psychosocial and psychiatric conditions. Decisional capacity may fluctuate and requires a variable amount of decisional ability depending on the clinical situation; hence, it is time-specific and decision-specific. This review is intended to provide a summary of key components of decisional capacity while highlighting areas in need of clinical refinement.

Dying individuals and suffering populations: applying a population-level bioethics lens to palliative care in humanitarian contexts: before, during and after the COVID-19 pandemic.

BACKGROUND: Humanitarian crises and emergencies, events often marked by high mortality, have until recently excluded palliative care-a specialty focusing on supporting people with serious or terminal illness or those nearing death. In the COVID-19 pandemic, palliative care has received unprecedented levels of societal attention. Unfortunately, this has not been enough to prevent patients dying alone, relatives not being able to say goodbye and palliative care being used instead of intensive care due to resource limitations. Yet global guidance was available. In 2018, the WHO released a guide on 'Integrating palliative care and symptom relief into the response to humanitarian emergencies and crises'-the first guidance on the topic by an international body. AIMS: This paper argues that while a landmark document, the WHO guide took a narrowly clinical bioethics perspective and missed crucial moral dilemmas. We argue for adding a population-level bioethics lens, which draws forth complex moral dilemmas arising from the fact that groups having differential innate and acquired resources in the context of social and historical determinants of health. We discuss dilemmas concerning: limitations of material and human resources; patient prioritisation; euthanasia; and legacy inequalities, discrimination and power imbalances. IMPLICATIONS: In parts of the world where opportunity for preparation still exists, and as countries emerge from COVID-19, planners must consider care for the dying. Immediate steps to support better resolutions to ethical dilemmas of the provision of palliative care in humanitarian and emergency contexts will require honest debate; concerted research effort; and international, national and local ethical guidance.

Patient and Family Descriptions of Ethical Concerns.

Ethically challenging situations routinely arise in the course of illness and healthcare. However, very few studies have surveyed patients and family members about their experiences with ethically challenging situations. To address this gap in the literature, we surveyed patients and family members at three hospitals. We conducted a content analysis of their responses to open-ended questions about their most memorable experience with an ethical concern for them or their family member. Participants (N = 196) described 219 unique ethical experiences that spanned many of the prevailing themes of bioethics, including the patient-physician relationship, end-of-life care, decision-making capacity, healthcare costs, and genetic testing. Participants focused on relational issues in the course of experiencing illness and receiving medical care and concerns regarding the patient-physician encounters. Many concerns arose outside of a healthcare setting. These data indicate areas for improvement for healthcare providers but some concerns may be better addressed outside of the traditional healthcare setting.

Exploring patient-reported barriers to advance care planning in family practice.

BACKGROUND: Although patient-centred care has become increasingly important across all medical specialties, when it comes to end of life care, research has shown that treatments ordered are not often concordant with people's expressed preferences. Patient and family engagement in Advance Care Planning (ACP) in the primary care setting could improve the concordance between patients' wishes and the healthcare received when patients cannot speak for themselves. The aim of this study was to better understand the barriers faced by older patients regarding talking to their family members and family physicians about ACP. METHODS: In this multi-site cross-sectional study, three free text questions regarding reasons patients found it difficult to discuss ACP with their families or their family physicians were part of a self-administered questionnaire about patients' knowledge of and engagement in ACP. The questionnaire, which included closed ended questions followed by three probing open ended questions, was distributed in 20 family practices across 3 provinces in Canada. The free text responses were analyzed using thematic analysis and form the basis of this paper. RESULTS: One hundred two participants provided an analyzable response to the survey when asked why they haven't talked to someone about ACP. Two hundred fifty-four answered the question about talking to their physician and 340 answered the question about talking to family members. Eight distinct themes emerged from the free text response analysis: 1. They were too young for ACP; 2. The topic is too emotional; 3. The Medical Doctor (MD) should be responsible for bringing up ACP 4. A fear of negatively impacting the patient-physician relationship; 5. Not enough time in appointments; 6. Concern about family dynamics; 7. It's not a priority; and 8. A lack of knowledge about ACP. CONCLUSIONS: Patients in our sample described many barriers to ACP discussions, including concerns about the effect these discussions may have on relationships with both family members and family physicians, and issues relating to patients' knowledge and interpretation of the importance, responsibility for, or relevance of ACP itself. Family physicians may be uniquely placed to leverage the longitudinal, person- centred relationship they have with patients to mitigate some of these barriers.

American College of Physicians Ethics Manual: Seventh Edition.

Medicine, law, and social values are not static. Reexamining the ethical tenets of medicine and their application in new circumstances is a necessary exercise. The seventh edition of the American College of Physicians (ACP) Ethics Manual covers emerging issues in medical ethics and revisits older ones that are still very pertinent. It reflects on many of the ethical tensions in medicine and attempts to shed light on how existing principles extend to emerging concerns. In addition, by reiterating ethical principles that have provided guidance in resolving past ethical problems, the Manual may help physicians avert future problems. The Manual is not a substitute for the experience and integrity of individual physicians, but it may serve as a reminder of the shared duties of the medical profession.

Ethical Challenges in Care of Patients on Mechanical Circulatory Support at End-of-Life.

PURPOSE OF REVIEW: Although the utilization of mechanical circulatory support (MCS) devices is increasing, ethical dilemmas regarding device deactivation and dying process persist, potentially complicating delivery of optimal and compassionate care at end-of-life (EOL). This review aims to study EOL challenges, left ventricular assist devices (LVADs) as a nuanced life support treatment, legal history in the US impacting EOL care, and suggestions to improve EOL care for patients on MCS support. RECENT FINDINGS: Recent studies have demonstrated challenging aspects of EOL care for patients on LVAD support: low use of advanced directives, high rates of surrogate decision-making due to lack of patient capacity, difficult decision-making involving LVAD deactivation even with cooperating patients, and high rates of death in the hospital and ICU settings. Recent studies also suggest lack of consensus even among clinicians in approaching LVAD deactivation as beliefs equating LVAD deactivation with physician-assisted suicide and/or euthanasia remain. Optimal care at EOL will likely require collaborative efforts among multiple specialties, caregivers, and patients. In light of the complex medical, logistical, and ethical challenges in EOL care for LVAD patients, there is room for improvement by multidisciplinary efforts to reach consensus about LVAD deactivation and best practices for EOL care, development and implementation of LVAD-specific advance planning, and protocols for LVAD deactivation. Programmatic involvement of hospice and palliative care in the continuum of care of LVAD patients has the potential to increase and improve advance care planning, support surrogate decision-making, improve EOL compassionate care, and to support caregivers.