Modern medicine provides unprecedented opportunities in diagnostics and treatment. However, in some situations at the end of a patient’s life, many physicians refrain from using all possible measures to prolong life. We studied the incidence of different types of treatment withheld or withdrawn in 6 European countries and analyzed the main background characteristics.

Background:Despite the growing body of knowledge about surrogate decision making, we know very little about the use of ethical frameworks (including ethical theories, principles, and concepts) to understand surrogates’ day-to-day experiences in end-of-life care planning for incapacitated adults.Objectives and Methods:This qualitative systematic review was conducted to identify the types of ethical frameworks used to address surrogates’ experiences in end-of-life care planning for incapacitated adults as well as the most common themes or patterns found in surrogate decision-making (...) research.Findings:Seven research papers explicitly identified ethical theories, principles, or concepts, such as autonomy, substituted judgment, and best interest standards as guidelines for the research. Surrogate decision making themes included the responsibilities and goals of being a surrogate, factors influencing surrogates’ decision making, outcomes for surrogates, and an overarching theme of “wanting to do the right thing” for their loved one and/or themselves.Discussion:Understanding the complexity of surrogates’ experiences of end-of-life care planning is beyond the scope of conventional ethical frameworks.Conclusion:Ethical frameworks that address individuality and contextual variations related to decision making may more appropriately guide surrogate decision-making research that explores surrogates’ end-of-life care planning experiences. (shrink)

Simonet, Emanuel Nicolas Cortes Advance care planning is a significant and important process of end-of-life care. It provides the opportunity for persons to express their medical treatment preferences prior to losing the capacity to decide for themselves. It also allows for the appointment of substituted decision maker to make medical decisions for persons who have lost capacity. Whilst advance care planning can be beneficial when it is used effectively, the legislative framework surrounding advance care planning is (...) complex and confusing. This brief article will summarise advance care planning, its current legislative framework in Victoria and how proposed recommendations offered by the Inquiry into end of life choices may simplify advance care planning. (shrink)

Physicians and families need to interact more meaningfully to clarify the values and preferences at stake in advance care planning. The current use of advance directives fails to respect patient autonomy. This paper proposes using the family covenant as a preventive ethics process designed to improve end-of-life planning by incorporating other family members—as agreed to by the patient and those family members—into the medical care dialogue. The family covenant formulates advance directives in conversation with family members and (...) with the assistance of a physician, thereby making advance directives more acceptable to the family, and more intelligible to other physicians. It adds the moral force of a promise to the obligation of respecting a patient’s preferences about end-of-life care. These negotiations between patient, family, and physician, from early planning phases through implementation, should greatly reduce the incidence of family disagreements on what the patient would have wanted. The family covenant ensures advance directive discussions within the family, promotes and respects the autonomy of other family members, and might even spur others in the family to complete advance directives through additional covenants. The family covenant holds the potential to transform moral quagmires into meaningful moral conversation. J Am Geriatr Soc 51:1155–1158, 2003. (shrink)

Background: Pediatric guidelines recommend that children and adolescents participate in a developmentally appropriate way in end-of-life decision making. Shared decision making in pediatrics is unique because of the triadic relationship of patient, parents, and physician. The involvement of the patient may vary on a continuum from no involvement to being the sole decision maker. However, the effects of child participation have not been thoroughly studied. The aims of this literature review are to identify studies on end-of-life decision making (...) in pediatrics, to explore patient participation, and to assess the effects of such participation. Methods: Five databases—PubMed, PsycInfo, Medline, CINAHL, and Sociological Abstract—were searched for empirical studies on end-of-life decision making in pediatrics. Selected articles fulfilling the criteria were assessed for type of decision, participants’ characteristics, reports on participation of the minor patient, and outcome. Results: Fifty-seven articles on end-of-life decision making in pediatrics were identified. The majority of papers (n = 43, 75%) investigated parents’ and clinicians’ perspectives, while only 14 articles (25%) included perspectives of children and adolescents. Twenty-two articles (39%) reported some details on various forms of children's participation (e.g., receive information, plan care details, consulted before or after a decision was made). Positive (e.g., respect for patient's preferences) and negative (e.g., conflict due to diverging opinions) effects of children's participation in end-of-life decision making were reported. Conclusions: This systematic review highlights the need for research to identify factors that contribute to a favorable participation of minors in decision-making processes, as well as strategies to solve possible conflicts. More research should take into account the dynamics in the triadic process of decision making and emphasize children and adolescents’ perspectives. A better understanding of how to meaningfully involve children and adolescents in end-of-life decision making could facilitate the practice of patient participation in pediatrics. (shrink)

BackgroundRespect for autonomy is a paramount principle in end-of-life ethics. Nevertheless, empirical studies show that decision-making, exclusively focused on the individual exercise of autonomy fails to align well with patients’ preferences at the end of life. The need for a more contextualized approach that meets real-life complexities experienced in end-of-life practices has been repeatedly advocated. In this regard, the notion of ‘relational autonomy’ may be a suitable alternative approach. Relational autonomy has even been advanced as a (...) foundational notion of palliative care, shared decision-making, and advance-care planning. However, relational autonomy in end-of-life care is far from being clearly conceptualized or practically operationalized.Main bodyHere, we develop a relational account of autonomy in end-of-life care, one based on a dialogue between lived reality and conceptual thinking. We first show that the complexities of autonomy as experienced by patients and caregivers in end-of-life practices are inadequately acknowledged. Second, we critically reflect on how engaging a notion of relational autonomy can be an adequate answer to addressing these complexities. Our proposal brings into dialogue different ethical perspectives and incorporates multidimensional, socially embedded, scalar, and temporal aspects of relational theories of autonomy. We start our reflection with a case in end-of-life care, which we use as an illustration throughout our analysis.ConclusionThis article develops a relational account of autonomy, which responds to major shortcomings uncovered in the mainstream interpretation of this principle and which can be applied to end-of-life care practices. (shrink)

A book for nurses, doctors and all who provide end of life care, this essential volume guides readers through the ethical complexities of such care, including current policy initiatives, and encourages debate and discussion on their controversial aspects. dived into two parts, it introduces and explains clinical decision making-processes about which there is broad consensus, in line with guidance documents issued by WHO, BMA, GMC, and similar bodies. The changing political and social context where 'patient choice' has become a (...) central idea, and the broadened scope of potients' best interests, have added to the complexity of decision-making in end of life care. The authors discuss issues widely encountered by GPs, nurses, and hospital clinicians. These include patient choice, consent, life-prolonging treatment, and symptom relief including sedation. Part rwo explores the more controversial current end of life care initiatives, such as advance care planning preferred place of care and death, euthanais and assited suicide, extended ideas of 'best interests', and the view that there are therapeutic duties to the relatives of Throughout their discussion the authors draw attention to loose ends and contradictions in some of the proposals. Examining the current policy of comsumerist choice, they reject its place in the health service, proposing a a realistic, fair, humane and widely adoptable system of end of life care. As knowledge of ethical theories is required in training courses, and the vocabulary of ethical theory is widespread in current discussions a substantial appendix on ethical theories and terms is available online. Written by the same authors as The Philosophy of Palliative Care: Critique and Reconstruction, which won the Medical Journalists' Association Specialits Book Award 2007, this new book for non-specialists is essential reading for all health care professionals involved in providing end of life care. (shrink)

Voluntary active euthanasia and physician-assisted suicide remain technically illegal in the Netherlands, but the practices are openly tolerated provided that physicians adhere to carefully constructed guidelines. Harsh criticism of the Dutch practice by authors in the United States and Great Britain has made achieving a balanced understanding of its clinical, moral, and policy implications very difficult. Similar practice patterns probably exist in the United States, but they are conducted in secret because of a more uncertain legal and ethical climate. In (...) this manuscript, we plan to compare end-of-life care in the United States and the Netherlands with regard to underlying values, justifications, and practices. We will explore the risks and benefits of each system for a real patient who was faced with a common end-of-life clinical dilemma, and close with challenges for public policies in both countries. (shrink)

PurposeAdvance directives have been criticized for failing to help physicians make decisions consistent with patients’ wishes. This pilot study sought to determine if an interactive, computer-based decision aid that generates an advance directive can help physicians accurately translate patients’ wishes into treatment decisions.MethodsWe recruited 19 patient-participants who had each previously created an advance directive using a computer-based decision aid, and 14 physicians who had no prior knowledge of the patient-participants. For each advance directive, three physicians were randomly assigned to review (...) the advance directive and make five to six treatment decisions for each of six (potentially) end-of-life clinical scenarios.From the three individual physicians’ responses, a “consensus physician response” was generated for each treatment decision (total decisions = 32). This consensus response was shared with the patient whose advance directive had been reviewed, and she/he was then asked to indicate how well the physician translated his/her wishes into clinical decisions.ResultsPatient-participants agreed with the consensus physician responses 84 percent (508/608) of the time, including 82 percent agreement on whether to provide mechanical ventilation, and 75 percent on decisions about cardiopulmonary resuscitation (CPR).Across the six vignettes, patient-participants’ rating of how well physicians translated their advance directive into medical decisions was 8.4 (range = 6.5-10, where 1 = extremely poorly, and 10 = extremely well). Physicians’ overall rating of their confidence at accurately translating patients’ wishes into clinical decisions was 7.8 (range = 6.1-9.3, 1 = not at all confident, 10 = extremely confident).ConclusionFor simulated cases, a computer-based decision aid for advance care planning can help physicians more confidently make end-of-life decisions that patients will endorse. (shrink)

The aim of this study was to evaluate terminal care among hospitalized children who died of HIV/AIDS. The design was a retrospective chart review of the terminal hospitalization. The setting was a public, secondary and tertiary children's hospital in Cape Town, South Africa (SA). The patients included a consecutive series of in‐patient deaths from HIV‐related causes. The main outcome measures included: documentation of do not resuscitate (DNR) orders and comfort care plans, intensity of diagnostic and therapeutic interventions in last 24 (...) hours of life, and presence of pain and distress in last 48 hours of life. The results are based on the review of 165 out of 167 in‐patient deaths. Of those, 79% of patients died in general wards. Median age and length of stay were 4 months and 6 days respectively. A total of 84% of patients had a DNR order. DNR orders appeared simultaneously in only 41% of medical and nursing notes. Only 44% of patients had a comfort care plan. Pain and distress in the last 48 hours was documented in 55% of patients who died in the general wards. Respiratory symptomatology and painful skin conditions accounted for most discomfort. Half (36/72) the patients with pain and distress, including 16 with a comfort care plan, received no analgesia. Conclusions drawn found that, despite clinical uncertainty, doctors made tough end of life decisions that included DNR orders and comfort care plans. The lower rate of comfort care plans suggests doctors had difficulty making the transition from curative to palliative care. Many comfort care plans were incoherent and included interventions unlikely to promote patients' comfort. In light of the HIV/AIDS pandemic in SA, reforms are needed to integrate palliative care within mainstream hospital medicine. However, without adequate human resources including trained interpreters, doctors and nurses will struggle to deliver optimal terminal care in acute hospitals. (shrink)

Voluntary active euthanasia (VAE) and physician-assisted suicide (PAS) remain technically illegal in the Netherlands, but the practices are openly tolerated provided that physicians adhere to carefully constructed guidelines. Harsh criticism of the Dutch practice by authors in the United States and Great Britain has made achieving a balanced understanding of its clinical, moral, and policy implications very difficult. Similar practice patterns probably exist in the United States, but they are conducted in secret because of a more uncertain legal and ethical (...) climate. In this manuscript, we plan to compare end-of-life care in the United States and the Netherlands with regard to underlying values, justifications, and practices. We will explore the risks and benefits of each system for a real patient who was faced with a common end-of-life clinical dilemma, and close with challenges for public policies in both countries. (shrink)

With a focus on end-of-life discussion in aging and chronically ill populations, this book offers insight into the skill of communicating in complex and emotionally charged discussions. This text is written for all clinicians and professionals in the fields of healthcare and public health who are faced with questions of ethical deliberation when a patient's illness turns from chronic to terminal. This skill is required to manage care well in an age of advanced technology, and numerous autonomous choices. With (...) a palliative care and ethics focus, the manuscript provides case studies illustrating issues which occur in the acuity and chronicity of end of life. Clear tools for clinicians, such as scripting and "the advance care planning video library" are included. The book focuses on the unique concept of outpatient ethics, including readmission prevention and shortened length of stay through good communication for clinicians who will be required to conduct this discussion with patients. The ethical undertone in this text provides a perfect opening for application in healthcare ethics classes, both in fields of public health and healthcare. Medical scholars and physicians, nurse practitioners and physician's assistants, as well as social workers, both in practice and training, will benefit from this text. (shrink)

Ethicists and physicians all over the world have been working on triage protocols to plan for the possibility that the Covid‐19 pandemic will result in shortages of intensive care unit beds, ventilators, blood products, or medications. In reflecting on those protocols, many health care workers have noticed that, outside the pandemic shortage situation, we routinely supply patients in the ICU with invasive and painful care that will not help the patients survive even their hospitalization. This is the kind of pointless (...) care that even the most basic protocol would triage against. Perhaps this widespread reflection on triage standards will draw our attention to our ongoing custom of supplying burdensome and inefficacious care to those near the end of life—care that most health care providers would not want for themselves. This essay argues that reflecting on triage could help us improve end‐of‐life care. (shrink)

Death is the destiny we all share, and this will not change. Yet the way we die, which had remained the same for many generations, has changed drastically in a relatively short time for those in developed countries with access to healthcare. For generations, if people were lucky enough to reach old age, not having died in infancy or childhood, in childbirth, in war, or by accident, they would take to bed, surrounded by loved ones who cared for them, and (...) fade into death. Most likely, they would have seen their parents and grandparents die the same way, and so this manner of dying would be familiar: it was part of the natural cycle of life. Now less than 25 per cent of Americans die at home, having reached much older ages than people would have dreamed of in past generations, often after surviving many illnesses and even diseases that would have been terminal for their grandparents. We are fortunate to live (and die) today, supported by myriad scientific, medical, and technological advancements, however we also face new problems as a result of the new way in which we die. We can no longer anticipate a peaceful waning at home with family. We know our lives will likely end in hospitals likely after we have endured grueling treatments to prolong life. We have to decide what decisions we want our loved ones, or care-givers, to make when we cannot choose for ourselves. We have to think about whether in any circumstances we would seek physician-assisted death. We know we face other questions as well, but we may not even know where to start. In the face of these decisions, we can feel daunted and afraid. The best remedy is information and planning. In this book, Gregory Eastwood - a physician who has cared for dying patients, served as an ethics consultant, and taught end of life issues to medical and other health profession students - draws from his substantial experience with patients and families to provide the information that will help us think clearly about the choices and issues we will face at the end of our own lives, and when faced with the deaths of our loved ones. With sensitivity and profound insight, Eastwood guides us through all the important questions about death and dying in straightforward, clear language, enhanced by real-life stories. Throughout, he shows us how we can take ownership of the way we want to die, when we must die, and feel more in control as death approaches. (shrink)

So often, the discussion of what comes at the end of life is side-stepped, avoided, delayed, or never had. Deciding how to make a "good" death, and where to have it, is difficult, but with guidance and examples, the dying and their families can make informed decisions that help ease the path. This book will help them do just that.

Studies on end-of-life care reveal different practices regarding withholding and/or withdrawing life-sustaining treatments between countries and regions. Available data about physicians’ practices regarding end-of-life care in ICUs in Egypt is scarce. This study aimed to investigate physicians’ attitudes toward end-of-life care and the reported practice in adult ICUs in Ain Shams University Hospitals, Cairo, Egypt. 100 physicians currently working in several ICU settings in Ain Shams University Hospitals were included. A self-administered questionnaire was used for collection (...) of data. Most of the participants agreed to implementation of “do not resuscitate” orders and applying pre-written DNR orders, while only 13% almost always/often order DNR for terminally-ill patients. 52% of the participants agreed to usefulness of limiting life-sustaining therapy in some cases, but they expressed fear of legal consequences. 47% found withholding life-sustaining treatment is more ethical than its withdrawal. 16% almost always/often withheld further active treatment but continued current ones while only 6% almost always/often withdrew active therapy for terminally-ill patients. The absence of legislation and guidelines for end-of-life care in ICUs at Ain Shams University Hospitals was the main influential factor for the dissociation between participants’ attitudes and their practices. Therefore, development of a consensus for end-of-life care in ICUs in Egypt is mandatory. Also, training of physicians in ICUs on effective communication with patients’ families and surrogates is important for planning of limitation of life-sustaining treatments. (shrink)

BackgroundAlthough the Life-Sustaining Treatment (LST) Decision Act was enforced in 2018 in Korea, data on whether it is well established in actual clinical settings are limited. Hospital-acquired pneumonia (HAP) is a common nosocomial infection with high mortality. However, there are limited data on the end-of-life (EOL) decision of patients with HAP. Therefore, we aimed to examine clinical characteristics and outcomes according to the EOL decision for patients with HAP.MethodsThis multicenter study enrolled patients with HAP at 16 referral hospitals (...) retrospectively from January to December 2019. EOL decisions included do-not-resuscitate (DNR), withholding of LST, and withdrawal of LST. Descriptive and Kaplan–Meier curve analyses for survival were performed.ResultsOf 1,131 patients with HAP, 283 deceased patients with EOL decisions (105 cases of DNR, 108 cases of withholding of LST, and 70 cases of withdrawal of LST) were analyzed. The median age was 74 (IQR 63–81) years. The prevalence of solid malignant tumors was high (32.4% vs. 46.3% vs. 54.3%, P = 0.011), and the ICU admission rate was lower (42.9% vs. 35.2% vs. 24.3%, P = 0.042) in the withdrawal group. The prevalence of multidrug-resistant pathogens, impaired consciousness, and cough was significantly lower in the withdrawal group. Kaplan–Meier curve analysis revealed that 30-day and 60-day survival rates were higher in the withdrawal group than in the DNR and withholding groups (log-rank P = 0.021 and 0.018). The survival of the withdrawal group was markedly decreased after 40 days; thus, the withdrawal decision was made around this time. Among patients aged below 80 years, the rates of EOL decisions were not different (P = 0.430); however, mong patients aged over 80 years, the rate of withdrawal was significantly lower than that of DNR and withholding (P = 0.001).ConclusionsAfter the LST Decision Act was enforced in Korea, a DNR order was still common in EOL decisions. Baseline characteristics and outcomes were similar between the DNR and withholding groups; however, differences were observed in the withdrawal group. Withdrawal decisions seemed to be made at the late stage of dying. Therefore, advance care planning for patients with HAP is needed. (shrink)

Clear guidelines addressing the ethically appropriate use of anti-infectives in the setting of hospice care do not exist. There is lack of understanding about key treatment decisions related to infection treatment for patients who are eligible for hospice care. Ethical concerns about anti-infective use at the end of life include: (1) delaying transition to hospice, (2) prolonging a dying process, (3) prescribing regimens incongruent with a short life expectancy and goals of care, (4) increasing the reservoir of potential (...) resistant pathogens, (5) placing unreasonable costs on a capitated hospice system. Although anti-infectives are thought to be relatively safe, they can place a burden on patients and be inconsistent to particular care plans. The current complex, and at times fragmented, medical care often fails to address these issues in decision-making. In many ways, the ethics governing the end of life decisions related to dialysis, hydration/nutrition, and hypercalcemia parallel those of anti-infectives. In this article we articulate important elements in ethical decision-making in the application of anti-infectives for patients who are eligible for hospice care, and we point to the need for prospective studies to help refine particular guidelines in these cases. (shrink)

ABSTRACT Clear guidelines addressing the ethically appropriate use of anti‐infectives in the setting of hospice care do not exist. There is lack of understanding about key treatment decisions related to infection treatment for patients who are eligible for hospice care. Ethical concerns about anti‐infective use at the end of life include: (1) delaying transition to hospice, (2) prolonging a dying process, (3) prescribing regimens incongruent with a short life expectancy and goals of care, (4) increasing the reservoir of (...) potential resistant pathogens, (5) placing unreasonable costs on a capitated hospice system. Although anti‐infectives are thought to be relatively safe, they can place a burden on patients and be inconsistent to particular care plans. The current complex, and at times fragmented, medical care often fails to address these issues in decision‐making. In many ways, the ethics governing the end of life decisions related to dialysis, hydration/nutrition, and hypercalcemia parallel those of anti‐infectives. In this article we articulate important elements in ethical decision‐making in the application of anti‐infectives for patients who are eligible for hospice care, and we point to the need for prospective studies to help refine particular guidelines in these cases. (shrink)

Patient-and-family-centered care (PFCC) is critical in end-of-life (EOL) settings. PFCC serves to develop and implement patient care plans within the context of unique family situations. Key components of PFCC include collaboration and communication among patients, family members and healthcare professionals (HCP). Ethical challenges arise when the burdens (e.g., economic, psychosocial, physical) of family members and significant others do not align with patients’ wishes. This study aims to describe the concept of vulnerability and the ethical challenges faced by HCPs in (...) these circumstances. Further, it assesses the contribution of clinical ethics consultation (CEC) in assisting HCPs to face these difficult ethical conundrums. Two clinical cases are analyzed using the Circle Method of CEC. The first regards the difficulty faced by the doctor in justifying treatments previously agreed upon between the patient and his/her friends. The second regards the patient’s concern about being a burden on their family. Family burdens in EOL settings challenge PFCC in that patient autonomy may be disregarded. This compromises shared decision-making between the patient, family and HCPs as a core component of PFCC. In their ability to promote a collaborative approach, CECs may assist in the successful implementation of PFCC. (shrink)

BackgroundEthically challenging critical events and decisions are common in nursing homes. This paper presents nursing home doctors’ descriptions of how they include the patient and next of kin in end-of-life decisions.MethodsWe performed ten focus groups with 30 nursing home doctors. Advance care planning; aspects of decisions on life-prolonging treatment, and conflict with next of kin were subject to in-depth analysis and condensation.ResultsThe doctors described large variations in attitudes and practices in all aspects of end-of-life decisions. In (...) conflict situations, many doctors were more concerned about the opinion of next of kin than ensuring the patient’s best interest.ConclusionsMany end-of-life decisions appear arbitrary or influenced by factors independent of the individual patient’s values and interests and are not based on systematic ethical reflections. To protect patient autonomy in nursing homes, stronger emphasis on legal and ethical knowledge among nursing home doctors is needed. (shrink)

This book challenges fundamental doctrines of established medical ethics. It is argued that the routine practice of stopping life support technology causes the death of patients and that donors of vital organs (hearts, liver, lungs, and both kidneys) are not really dead at the time that their organs are removed for life-saving transplantation. Although these practices are ethically legitimate, they are not compatible with traditional medical ethics: they conflict with the norms that doctors must not intentionally cause the (...) death of their patients and that vital organs can be obtained only from dead donors. The aim of this book is to undertake an ethical examination that aims to honestly face the reality of medical practices at the end of life. This involves exposing the misconception that stopping life support merely allows patients to die from their medical conditions, that there is an ethical bright line separating withdrawal of life support from active euthanasia, and that determination of death of hospitalized patients prior to vital organ donation is consistent with the established biological conception of death. A novel ethical justification is required for procuring vital organs from still-living donors. It is contended that in the context of plans to withdraw life support, donors of vital organs are not harmed or wronged by organ procurement prior to death, provided that valid consent is obtained for stopping treatment and organ donation. In view of serious practical difficulties in facing the truth regarding organ donation, an alternative pragmatic account is developed for justifying current practices that relies on the concept of transparent legal fictions. In sum, it is the thesis of this book that to preserve the legitimacy of end-of-life practices, we need to reconstruct medical ethics. (shrink)

Who should have a right to participate in a polity’s decision-making? Although the answers to this ‘boundary problem’ in democratic theory remain controversial, it is widely believed that the enfranchisement of tourists and children is unacceptable. Yet, the two most prominent inclusion principles in the literature – Robert Goodin’s ‘all (possibly) affected interests’-principle and the ‘all subjected to law’-principle – both enfranchise those groups. Unsurprisingly, democratic theorists have therefore offered several reasons for nonetheless exempting tourists and children from the franchise. (...) In this paper, I argue that their attempts fail. None of the proposed rationales can do the job without having unacceptable implications for the voting rights of other groups. I then develop a new specification of the affected interests-view, one that avoids such problems. According to my life plan-principle, a person is entitled to participate in a polity’s decision-making if and only if its decisions will actually affect her autonomously chosen life plans, or prevent her from developing or revising plans of that kind. I show that this principle straightforwardly avoids enfranchising tourists and children, and thus improves upon its two prominent rivals. The paper ends by considering and rejecting two objections to my new principle. (shrink)

An ICU and Palliative Care specialist featured in the Netflix documentary Extremis offers a framework for a better way to exit life that will change our medical culture at the deepest level In medical school, no one teaches you how to let a patient die. Jessica Zitter became a doctor because she wanted to be a hero. She elected to specialize in critical care--to become an ICU physician--and imagined herself swooping in to rescue patients from the brink of death. (...) But then during her first code she found herself cracking the ribs of a patient so old and frail it was unimaginable he would ever come back to life. She began to question her choice. Extreme Measures charts Zitter's journey from wanting to be one kind of hero to becoming another--a doctor who prioritizes the patient's values and preferences in an environment where the default choice is the extreme use of technology. In our current medical culture, the old and the ill are put on what she terms the End-of-Life Conveyor belt. They are intubated, catheterized, and even shelved away in care facilities to suffer their final days alone, confused, and often in pain. In her work Zitter has learned what patients fear more than death itself : the prospect of dying badly. She builds bridges between patients and caregivers, formulates plans to allay patients' pain and anxiety, and enlists the support of loved ones so that life can end well, even beautifully. Filled with rich patient stories that make a compelling medical narrative, Extreme Measures enlarges the national conversation as it thoughtfully and compassionately examines an experience that defines being human. (shrink)

Advanced directives and living wills have improved our ability to dictate end-of-life care, but even these cannot guarantee that we will be allowed the dignity of a natural death. Designed by two sisters-one a doctor, one a lawyer-and drawing on their decades of experience, the five-step Compassion Protocol outlined in A Better Way of Dying offers a simple and effective framework for leaving caretakers concrete, unambiguous, and legally binding instructions about your wishes for your last days. Meant for people (...) in every walk of life-from the elderly, to those in the early stages of mentally degenerative diseases like Alzheimer's, to healthy young people planning for an unpredictable future-this book creates space for a discussion we all must have if we wish to ensure comfort and control at the end of our lives.." -- from publisher's website. (shrink)

How China’s expansive new era of urbanization threatens to undermine the foundations of rural life Since the beginning of the twenty-first century, China has vastly expanded its urbanization processes in an effort to reduce the inequalities between urban and rural areas. Centered on the mountainous region of Chongqing, which serves as an experimental site for the country’s new urban development policies, The End of the Village analyzes the radical expansion of urbanization and its consequences for China’s villagers. It reveals (...) a fundamental rewriting of the nation’s social contract, as villages that once organized rural life and guaranteed rural livelihoods are replaced by an increasingly urbanized landscape dominated by state institutions. Throughout this comprehensive study of China’s “urban–rural coordination” policy, Nick R. Smith traces the diminishing autonomy of the country’s rural populations and their subordination to larger urban networks and shared administrative structures. Outside Chongqing’s urban centers, competing forces are at work in reshaping the social, political, and spatial organization of its villages. While municipal planners and policy makers seek to extend state power structures beyond the boundaries of the city, village leaders and inhabitants try to maintain control over their communities’ uncertain futures through strategies such as collectivization, shareholding, real estate development, and migration. As China seeks to rectify the development crises of previous decades through rapid urban growth, such drastic transformations threaten to displace existing ways of life for more than 600 million residents. Offering an unprecedented look at the country’s contentious shift in urban planning and policy, The End of the Village exposes the precarious future of rural life in China and suggests a critical reappraisal of how we think about urbanization. (shrink)

The aim of the present study was to describe variations in patient participation in decisions about care planning during the final phase of life for a group of gravely ill patients, and how the different actors’ manner of acting promotes or impedes patient participation. Thirty-seven qualitative research interviews were conducted with relatives of the patients. The patients’ participation in the decisions could be categorized into four variations: self-determination, co-determination, delegation and nonparticipation. The manner in which patients, relatives and (...) caregivers acted differed in the respective variations; this seemed either to promote or to impede the patients’ opportunities of participating in the decision making. The possibility for participation seems to be context dependent and affected by many factors such as the dying patient’s personality, the social network, the availability of different forms of care, cultural values, and the extent to which nurses and other caregivers of the different forms of care can and want to support the wishes of the patients and relatives in the decision-making process. (shrink)

Background: Nurses are the largest professional group in healthcare and those who make more decisions. In 2014, the Committee on Bioethics of the Council of Europe launched the “Guide on the decision-making process regarding medical treatment in end-of-life situations”, aiming at improving decision-making processes and empowering professionals in making end-of-life decisions. The Guide does not mention nurses explicitly. Objectives: To analyze the ethical principles most valued by nurses working in palliative care when making end-of-life decisions and investigate (...) if they are consistent with the framework and recommendations of the Guide; to identify what disputed/controversial issues are more frequent in these nurses’ current end-of-life care practices. Design: Qualitative secondary analysis. Participants/context: Three qualitative datasets including 32 interviews from previous studies with nurses working in palliative care in Portugal. Ethical consideration: Ethical approval was obtained from the Ethics Research Lab of the Instituto de Bioética. Ethical procedures are thoroughly described. Findings: All participant nurses referred to autonomy as an ethical principle paramount in end-of-life decision-making. They were commonly involved in end-of-life decision-making. Palliative sedation and communication were the most mentioned disputed/controversial issues. Discussion: Autonomy was highly valued in end-of-life care and decision-making. Nurses expressed major concerns in assessing patients’ preferences, wishes, and promoting advance care planning. Nurses working in palliative care in Portugal were highly involved in end-of-life decision-making. These processes embraced a collective, inclusive approach. Palliative sedation was the most mentioned disputed issue, which is aligned with previous findings. Communication also emerged as a sensitive ethical issue; it is surprising, however, that only three nurses referred to it. Conclusion: While the Guide does not explicitly mention nurses in its content, this study shows that nurses working in palliative care in Portugal are involved in these processes. Further research is needed on nurses’ involvement and practices in end-of-life decision-making. (shrink)

The aim of the present study was to describe variations in patient participation in decisions about care planning during the final phase of life for a group of gravely ill patients, and how the different actors’ manner of acting promotes or impedes patient participation. Thirty-seven qualitative research interviews were conducted with relatives of the patients. The patients’ participation in the decisions could be categorized into four variations: self-determination, co-determination, delegation and nonparticipation. The manner in which patients, relatives and (...) caregivers acted differed in the respective variations; this seemed either to promote or to impede the patients’ opportunities of participating in the decision making. The possibility for participation seems to be context dependent and affected by many factors such as the dying patient’s personality, the social network, the availability of different forms of care, cultural values, and the extent to which nurses and other caregivers of the different forms of care can and want to support the wishes of the patients and relatives in the decision-making process. (shrink)

Medicine often views hospice care as “giving up,” which results in a reduced quality of end-of-life care for many patients. By integrating a theology of the Sabbath with modern medicine, hospice becomes a sacred and valuable way to honor the dying patient in a comprehensive and holistic way. A theology of Sabbath as “Sacredness in Time” can provide the foundation for a shift in understanding hospice as a legitimate care plan, which shifts the focus from controlling and manipulating space (...) for the body, to rest and enjoyment of time for the whole person. First, I explore vitalism and its negative effects on the institution of hospice. Second, I address the main misconceptions and biases surrounding hospice in order to establish hospice as an appropriate option for the terminally ill. Finally, I argue for a shift away from sacredness in space (as seen in vitalism) to sacredness in time. (shrink)

The Last Gift is an observational HIV cure-related research study conducted with people with HIV at the end of life (EOL) at the University of California San Diego. Participants agree to voluntarily donate blood and other biospecimens while living and their bodies for a rapid research autopsy postmortem to better understand HIV reservoir dynamics throughout the entire body. The Last Gift study was initiated in 2017. Since then, 30 volunteers were enrolled who are either (1) terminally ill with a (...) concomitant condition and have a prognosis of 6 months or less or (2) chronically ill with multiple comorbidities and nearing the EOL.Multiple ethical and logistical challenges have been revealed during this time; here, we share our lessons learnt and ethical analysis. Issues relevant to healthcare research include surrogate informed consent, personal and professional boundaries, challenges posed conducting research in a pandemic, and clinician burnout and emotional support. Issues more specific to EOL and postmortem research include dual roles of clinical care and research teams, communication between research personnel and clinical teams, legally required versus rapid research autopsy, identification of next of kin/loved ones and issues of inclusion. Issues specific to the Last Gift include logistics of body donation and rapid research autopsy, and disposition of the body as a study benefit.We recommend EOL research teams to have clear provisions around surrogate informed consent, rotate personnel to maintain boundaries, limit direct contact with staff associated with clinical care and have a clear plan for legally required versus research autopsies, among other recommendations. (shrink)

Objectives To examine the frequency and characteristics of decisions to forgo artificial nutrition and/or hydration at the end of life.Design Postal questionnaire survey regarding end-of-life decisions to physicians certifying a large representative sample of Belgian death certificates in 2007.Setting Flanders, Belgium, 2007.Participants Treating physicians of deceased patients.Results Response rate was 58.4%. A decision to forgo ANH occurred in 6.6% of all deaths . Being female, dying in a care home or hospital and suffering from nervous system diseases or (...) malignancies were the most important patient-related factors positively associated with a decision to forgo ANH. Physicians indicated that the decision to forgo ANH had had some life-shortening effects in 77% of cases. There had been no consultation with the patient in 81%, mostly due to incapacity . The family, colleague physicians and nurses were involved in decision making in 76%, 41% and 62%, respectively.Conclusions A substantial number of deaths are preceded by a decision to forgo ANH in Belgium. These decisions, ethically laden and involving a considerable chance of life shortening, are mostly not preceded by discussion with the patient despite existing patient rights legislation. It is recommended that physicians and patients and their families alike dedicate ample time to the discussion of treatment options and communication about the possibility of forgoing ANH and that this discussion takes place earlier as part of overall end-of-life care planning rather than at the very end of life. (shrink)

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. (shrink)

As a patient approaches death, family members often are asked about their loved one’s preferences regarding treatment at the end of life. Advance care directives may provide information for families and surrogate decision makers; however, less than one-third of Americans have completed such documents. As the U.S. population continues to age, many surrogate decision makers likely will rely on other means to discern or interpret a loved one’s preferences. While many surrogates indicate that they have some knowledge of their (...) loved one’s preferences, how surrogates obtain such knowledge is not well understood. Additionally, although research indicates that the emotional burden of end-of-life decision making is diminished when surrogates have knowledge that a loved one’s preferences are honored, it remains unclear how surrogates come to know these preferences were carried out. The current study examined the ways that next of kin knew veterans’ end-of-life preferences, and their ways of knowing whether those preferences were honored in Veteran Affairs Medical Center inpatient settings. (shrink)

Background Studies describing physicians’ experiences with sedation at the end of life are indispensible for informed palliative care practice, but they are scarce. We describe the accounts of physicians from the USA and the Netherlands, two countries with different regulations on end-of-life decisions regarding their use of sedation.Methods Qualitative face-to-face interviews were held in 2007–2008 with 36 physicians , including primary care physicians and specialists. We applied purposive sampling and conducted constant comparative analyses.Results In both countries, the use (...) of sedation was described in diverse terms, especially in the USA, and was often experienced as emotionally challenging. Respondents stated different and sometimes multiple intentions for their use of sedation. Besides alleviating severe suffering, most Dutch respondents justified its use by stating that it does not hasten death, while most American respondents indicated that it might hasten death but that this was justifiable as long as that was not their primary intention. While many Dutch respondents indicated that they initiated open discussions about sedation proactively to inform patients about their options and to allow planning, the accounts of American respondents showed fewer and less-open discussions, mostly late in the dying process and with the patient's relatives.Conclusions The justification for sedation and the openness with which it is discussed were found to differ in the accounts of respondents from the USA and the Netherlands. Further clarification of practices and research into the effect and effectiveness of the use of sedation is recommended to enhance informed reflection and policy making. (shrink)

OBJECTIVES: To study the accuracy of reviewing ward notes (chart review) as a measure of the quality of care rendered to patients with "Do Not Resuscitate" (DNR) orders. DESIGN: We reviewed the charts of 19 consecutive, competent inpatients with DNR orders for evidence that the staff addressed a broad range of patient care needs called Concurrent Care Concerns (CCCs), such as withholding treatments other than resuscitation itself, and attention to patient comfort needs. We then interviewed the patient, consultant physician, house (...) officer, and primary nurse and compared the ward notes with the understandings of these staff members. SETTING: The medical service of an urban university medical centre. RESULTS: The average number of documented CCCs addressed per DNR order was 1.1. The ward notes generally agreed with the perceptions of patients, house officers, and nurses (% agreement with notes = 79%, 77%, and 82%; kappa = 0.43, 0.40, 0.50). Consultant physicians' understandings were poorly reflected in the ward notes (% agreement = 59%; kappa = 0.18). They overestimated attention to CCCs compared with the notes (P < 0.0001) and with other observers (P < 0.0001). CONCLUSION: Chart review for attention to CCCs accurately reflects the understandings of patients, house officers, and nurses, but consultant physicians report more attention to CCCs than is recorded in the ward notes or understood by other observers. Better communication regarding end-of-life care plans should be encouraged. (shrink)

For those with advanced life-limiting illness, the optimization of quality of life and avoidance of nonbeneficial treatments at the end of life are key ethical concerns. This article evaluates the efficacy of an Interdisciplinary Ethics Panel (IEP) approach to decision making at the end of life for unbefriended nursing home residents who lack decisional capacity and have advanced life-limiting illness, through the use of a ninestep algorithm developed for this purpose. We reviewed the outcomes of (...) three quality-of-care phased initiatives conducted in our facility, a large public nursing home in New York City, between June 2016 and February 2020, which indicated that this IEP approach promoted advance-care planning, as palliative measures were endorsed to optimize quality of life for this vulnerable population at the end of life. We also examined another quality-of-care initiative when this IEP approach was applied to end-of-life decision making for nursing home residents who had a surrogate during the COVID-19 pandemic. This application appeared to be beneficial in adding more residents to our Palliative Care Program while it improved rates of advance-care planning. When all of the above findings are considered, we believe this novel IEP approach and algorithm have the potential to be applied elsewhere after appropriate assessment. (shrink)

The Institute of Medicine's report, the American Medical Association's project, the Open Society Institute's and the initiative sponsored by the Robert Wood Johnson Foundation have focused attention on improving the care of dying patients. These efforts include advance care planning and the use of written advance directives. Although previous studies have provided quantitative descriptions of patient preferences for life-sustaining treatment, including those documented in written ADs, to our knowledge open-ended written preferences have not been studied. Studies of these (...) open-ended preferences could highlight issues with respect to quality end-of-life care. The purpose of this study was to explore the open-ended proxy, health, and personal care preferences of people with HIV as expressed in a written AD form. (shrink)

Background Knowing the opinions of patients with Progressive Neurological Diseases and their family members on end-of-life care can help initiate communication and the drawing up of a care plan. The aim of this paper is to describe the creation and psychometric properties of the newly developed APND-EoLC questionnaire. Methods Following focus group discussion, four main areas of interest were identified: patients’ and family members’ attitudes towards end-of-life care, factors influencing decisions about treatment to prolong patients’ life, concerns (...) and fears regarding dying, and opinions on the system of care. The created questions were divided into domains based on factor analysis and psychometric properties were evaluated by sample of 209 patients with PND and 118 their family members. Results The final version of the scale contains a total of 28 questions divided into six domains and five individual questions determining views of the care system with specified response options. Construct validity was verified by confirmatory factor analysis for each evaluated area individually. Appropriate psychometric properties were identified in the questionnaire. Conclusions The APND-EoLC questionnaire can be recommended for use in both research and clinical practice. (shrink)

A number of influential reports on influenza pandemic preparedness include recommendations for extra-autonomous decisions to withdraw mechanical ventilation from some patients, who might still benefit from this technology, when demand for ventilators exceeds supply. An unintended implication of recommendations for nonvoluntary and involuntary termination of life support is that it make pandemic preparedness plans vulnerable to patients’ claims for assisted suicide and active euthanasia. Supporters of nonvoluntary passive euthanasia need to articulate why it is both morally different and morally (...) superior to voluntary active euthanasia if they do not wish to invite expansion of end-of-life options during health system catastrophe. (shrink)

In theory, at least, we might achieve a certain sort of invulnerability right at the end of life. Suppose that under favorable circumstances we can live a certain number of years, say 125, but no longer, and also that we can make life as a whole better and better over time. Under these assumptions we might hope to disarm death by spending 125 years making life as good as it can be. If we were lucky enough to (...) accomplish that, afterwards we would be immune to mortal harm. Especially for those who are closer to the beginning of life than to the end, however, this strategy leaves much to be desired. It is like devouring an entire banquet so as to eliminate the danger of someone stealing it from us. Like a feast, a good life is safely ours after it is over, but then safety comes too late to be of any use to us. To be of practical value, we need protection from mortal harm much earlier in life. (shrink)

ABSTRACTThis report on end‐of‐life decision‐making in Canada was produced by an international expert panel and commissioned by the Royal Society of Canada. It consists of five chapters.Chapter 1 reviews what is known about end‐of‐life care and opinions about assisted dying in Canada.Chapter 2 reviews the legal status quo in Canada with regard to various forms of assisted death.Chapter 3 reviews ethical issues pertaining to assisted death. The analysis is grounded in core values central to Canada's constitutional order.Chapter 4 (...) reviews the experiences had in a number of jurisdictions that have decriminalized or recently reviewed assisted dying in some shape or form.Chapter 5 provides recommendations with regard to the provision of palliative care in Canada, as well as recommendations for reform with respect to the various forms of assisted death covered in this document. (shrink)

Claims about ‘the meaning of life’ have tended to be made and discussed in conjunction with bold metaphysical and theological affirmations. For life to have meaning, there must be a comprehensive divine plan to give it meaning, or there must be an intelligible cosmic process with a ‘telos’ that a man needs to know if his life is to be meaningfully orientated. Or, it is thought to be a condition of the meaningfulness of life, that values (...) should be ultimately ‘conserved’ in some way, that no evil should be unredeemable and irrational. And it may be claimed that if death were to end our experience, meaninglessness would triumph. (shrink)

In this provocative book, a professor of philosophy examines the arguments for and against euthanasia, analyzes specific case studies, including those of Baby Jane Doe and Barney Clark, and offers an alternate theory on the morality of euthanasia. Various traditional distinctions--between "human" and "non-human," intentional and nonintentional, killing and "letting die"--are taken into account to determine whether euthanasia is permissible or not. Rachels presents a systematic argument against the traditional view, defending an alternative position based on the belief that there (...) is a profound difference between having a life and merely being alive. (shrink)