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 We studied the incidence of different types of treatment withheld or withdrawn in 6 European countries and analyzed the main background characteristics.

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)

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)

Simonet, Emanuel Nicolas Cortes; Herbert, Dilinie The Caroline Chisholm Centre for Health Ethics1 was established through the collaboration of private catholic hospitals in Victoria, namely: Cabrini Health, Calvary Health Care Bethlehem, Caritas Christi Hospice, Mercy Hospital for Women, Mercy Werribee Hospital, Mercy Palliative Care, St John of God Health Care, St Vincent's Hospital Melbourne, and St Vincent's Private Hospital Melbourne. Our role is to develop, review and respond to policies and procedures affecting Catholic Health Care; provide educational resources and formation (...) in ethics and offer ethics consultation and advisement. The Chisholm Health Ethics Bulletin is our quarterly publication that reports on ethical issues arising in health care as well as literature reviews of pertinent research topics that effect national and international interests. (shrink)

Since Oregon implemented its Death with Dignity Act, many additional states have followed suit demonstrating a growing understanding and acceptance of aid in dying processes. Traditionally, the patient has been the one to request and seek this option out. However, as Death with Dignity acts continue to expand, it will impact the role of physicians and bring up questions over whether physicians have the ethical obligation to facilitate a conversation about AID with patients during end of life discussions. Patients (...) have the right to make informed decisions about their health, which implies that physicians have an obligation to discuss with and inform patients of the options that will accomplish the patients’ goals of care. We will argue that physicians have an ethical obligation to inform certain patients about AID during end of life care discussions. We will also address what this obligation encompasses and explore guidelines of when and how these conversations should occur and proceed. Earlier guidelines, presented by various palliative care and ethics experts, for proceeding with such conversations have mostly agreed that the discussion of hospice and end of life care with patients should be initiated early and that the individual goals of a patient during the remaining duration of life should be thoroughly examined before discussion of appropriate options. In discussing AID, physicians should never recommend but inform patients about the basics so that they can make an informed decision. If patients express further interest in AID, the physician should open up the dialogue to address the reasoning behind this decision versus other possible treatments to ensure that patients clearly comprehend the process and implications of their decision. Ultimately, any end of life choice should be made by patients with the full capacity to express what they envision for the remaining duration of life and to comprehend the advantages and disadvantages of all the possible options. (shrink)

We are grateful to the commentators on our article1 for their thoughtful engagement with the ethical and clinical complexity of expanded terminal sedation (ETS) in end-of-life care. We will start by noting some points of common ground, before moving on to the more challenging ways in which TS might be permissibly expanded. First, several commentators pointed out, and we completely concur, that it is important to provide patients with full information about their end-of-life options, including the ‘outcomes, uncertainties (...) and costs of ETS’.2 Where possible, they should be given time to ‘process their feelings and to reflect on how they wish to live in their last few days, weeks or months’.3 Furthermore, where patients receive sedation, it will be critical that they receive appropriate medical and nursing care to prevent physical complications such as pressure ulcers.2 This would be no different from other patients who are in states of reduced consciousness from disease. We acknowledge that there are heightened risks with earlier and more rapid TS, including the potential loss of spiritual and social moments,4 as well as the meaning that can be derived from conscious existential distress.3 However, while these conscious experiences might be valuable to some, others might weigh them less highly against the foreseen …. (shrink)

Objective—To determine the objectivity, consistency and professional unanimity in the initiation, continuation and withdrawal of life-prolonging procedures in intensive care–to determine methods, time-scale for withdrawal and communication with both staff and relatives–to explore any professional unease about legality, morality or professional defensibility.Design—A structured questionnaire directed at clinical nurse managers for intensive care.Setting—All intensive care units in the Yorkshire region.Results—The survey reported a lack of consistency and objectivity in decision making in this area, with accompanying unease amongst staff.Conclusions—There is a (...) need to work towards more consistent care, both before and during admission, for the protection of the individual patient and to allow rational assessment of intensive care need. Comprehensive audit should lead to objective defensible decisions and facilitate informed choice. More open debate and better communication should minimise this issue as a source of stress amongst staff in intensive care. (shrink)

One of the most commonly referenced ethical principles when it comes to the management of dying patients is the doctrine of double effect (DDE). The DDE affirms that it is acceptable to cause side effects (e.g. respiratory depression) as a consequence of symptom‐focused treatment. Much discussion of the ethics of end of life care focuses on the question of whether actions (or omissions) would hasten (or cause) death, and whether that is permissible. However, there is a separate question about (...) the permissibility of hastening or causing unconsciousness in dying patients. Some authors have argued that the DDE would not permit end of life care that directly aims to render the patient unconscious. The claim is that consciousness is an objective human good and therefore doctors should not intentionally (and permanently) suppress it. Three types of end of life care (EOLC) practices will be explored in this article. The first is symptom‐based management (e.g. analgesia); the second is proportional terminal sedation as a means of relieving suffering (also referred to as palliative sedation or continuous deep sedation); and finally, deliberate and rapid sedation to unconsciousness until death (a practice we call terminal anaesthesia in this paper). After examining the common arguments for the various types of symptom‐based management and sedation, we apply the DDE to the latter two types of EOLC practices. We argue that aiming at unconsciousness, contrary to some claims, can be morally good or at least morally neutral in some dying patients. (shrink)

With the advancement of medical technology, various life-sustaining treatments are available at the end of life. Older adults should be encouraged to establish their end-of-life treatment preferences (ELTP) while they are physically and mentally able to do so. The purpose of this study was to explore ELTP among older adults and to compare those preferences in a subset of individuals who had reported their ELTP in a survey completed the previous year. This was a descriptive study of (...) 191 older adults living in a continuing care retirement community. Approximately half of the participants did not want cardiopulmonary resuscitation, to be put on a respirator, or to receive dialysis. The findings in this study suggest that many older adults do not want aggressive interventions at the end of life, but choose rather those measures that will keep them comfortable. Moreover, treatment choices may change over time. Health care providers should initiate discussions about ELTP at regular intervals (yearly) to assist older adults in dictating their end-of-life care. (shrink)

The management of patients suffering from chronic disorders of consciousness inevitably raises important ethical questions about the end of life decisions. Some ethical positions claim respect of human life sacredness and the use of good medical practices require allowing DOC patients to live as long as possible, since no one can arbitrarily end either his/her or others’ life. On the other hand, some currents of thought claim respect of human life dignity, patients’ wishes, and the right (...) of free choice entail allowing the withdrawal of life sustaining therapy. This could happen when patients believe their own life to be not worth living, or if therapy is not very beneficial, excessively burdensome, or even futile. Indeed, the decision to withdraw therapies in a DOC patient should be guided by reliable information about DOC diagnosis and prognosis and on how the patient would wish to be treated in such a condition. Taking into account such issues, it would be possible to make the decision that more adequately fits a DOC patient’s best interest. This review aims to overview the range of ethical issues referring to end-of-life decisions in DOC patients, with regard to the thorny debate on the sacredness and dignity of human life. (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)

Early in 1970, just as we were organizing The Hastings Center, we had to decide which issues on a long menu of possibilities should receive our early attention. At the top of our list was end-of-life care. Complaints about care for the dying had mounted during the 1960s, fueled by technological progress in sustaining life, by too many patients abandoned by physicians as they lay dying, by a lack of patient choice on how their lives should end, and (...) by woefully inadequate pain management. After a few years of study, the care of the dying seemed to admit of a solution: giving patients more choice by the use of living wills or appointment of a surrogate, improving the training of physicians to better deal with death and discussion with patients, and creating a hospice movement and greatly enhanced palliative care. (shrink)

Caring for the competent, fragile, elderly patient at the end of life is becoming increasingly challenging. This case explores several ethical areas of concern that arise when caring for patients who have written durable powers of attorney for health care decisions and face life or death choices. Areas covered are informed consent with the elderly patient, the family's right to be involved in decision-making, futility of treatment, and the nurse's role as patient advocate during times of difficult (...) decision-making. Recommendations for increased nursing intervention during these times are incorporated. Les soins des personnes âgés, fragiles mais toujours compétentes et dont la vie touche à sa fin, posent des problèmes de plus en plus urgents. Cet article discute de plusieurs aspets qui se manifestent dans les soins des malades ayant écrit des mandats concernants leurs soins et qui doivent maintenant prendre des décisions graves concernant la vie ou la mort. Les aspets dont il s'agit dans cet article sont: le consentement informé des personnes âgés: le droit de la famille de participer à la décision; les traitements inutiles; et le rôle des infirmiers/ères pour plaider leur cause pendant des moments difficles de prises de décisions. Des recommendations pour de plus importantes interventions infirmières sont comprises. Die Pflege der geistig kompetenten aber hinfälligen Personen im hohen Alter stellt immer grössere Anforderungen. Dieser Artikel untersucht verschiedene ethische Aspekte, die bei der Pflege von Patienten, die eine schriftliche Vollmacht über medizinische Behandlung ausgestellt haben für ihre Pflege und jetzt Entscheidungen über Leben oder Tod treffen müssen. Der Artikel umfasst folgende Bereiche: informierten Zustimmung des Patienten, das Mitbestimmungsrecht der Familie, Zwecklosigkeit der Behandlung, und die Rolle des Pflegepersonals als Fürsprecher der Patienten bei schwierigen Entscheidungen. Empfehlungen für eine grössere Beteiligung oder Mitbestimmung des Pflegepersonals in diesen Fällen sind eingeschlossen. (shrink)

Because an increasing number of patients have medical conditions that render them incompetent at making their own medical choices, more and more medical choices are now made by surrogates, often patient family members. However, many studies indicate that surrogates often do not discharge their responsibilities adequately, and in particular, do not choose in accordance with what those patients would have chosen for themselves, especially when it comes to end-of-life medical choices. This chapter argues that a significant (...) part of the explanation of such surrogate failure is that family surrogates are likely to undergo anticipatory grief when making end-of-life decisions. After clarifying both the emotional structure and object of grief, I propose that the pending death of a loved one induces an emotional conflict in surrogates between the care demanded by their responsibility as surrogates and the attachment surrogates feel toward their dying loved one, an attachment surrogates "resolve" in the direction of attachment rather than care. This hypothesis helps to explain both surrogates' general inability to exercise "substituted judgment" on behalf of their loved ones and a wide swath of the particular data regarding this inability (e.g., that surrogates more often err by choosing overtreatment). I conclude by considering possible clinical and philosophical responses to this hypothesis. (shrink)

Traditionally, physicians and parents made decisions about children’s health care based on western practices. More recently, with legal and ethical development of informed consent and recognition for decision making, children are becoming active participants in their care. The extent to which this is happening is however blurred by lack of clarity about what children — of diverse levels of cognitive development — are capable of understanding. Moreover, when there are multiple surrogate decision makers, parental and professional conflict can arise concerning (...) children’s ‘best interest’. Giving children a voice and offering choice promotes their dignity and quality of life. Nevertheless, it also presents with many challenges. Case studies using pseudonyms and changed situational identities are used in this article to illuminate the complexity of ethical challenges facing nurses in end-of-life care with children and families. (shrink)

BackgroundMost end-of-life decisions are made by family members. Current ethical guidelines for family decision making are based on a hierarchical model that emphasizes the patient’s wishes over his or her best interests. Evidence suggests that the model poorly reflects the strategies and priorities of many families.MethodsResearchers observed and recorded 26 decision-making meetings between hospital staff and family members. Semi-structured follow-up interviews were conducted. Transcriptions were analyzed using qualitative techniques.ResultsFor both staff and families, consideration of a patient’s best interests generally (...) took priority over the patient’s wishes. Staff generally introduced discussion of the patient’s wishes for rhetorical purposes, such as persuasion. Competing moral frameworks, which de-emphasized the salience of patients’ autonomy and “right to choose,” played a role in family decision making.ConclusionsThe priority given to the patients’ wishes in the hierarchical model does not reflect the priorities of staff and families in making decisions about end-of-life care. (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)

End-of-life decision-making in patients with dementia is a complex topic. Belgium and the Netherlands have been at the forefront of legislative advancement and progressive societal changes concerning the perspectives toward physician-assisted death (PAD). Careful consideration of clinical and social aspects is essential during the end-of-life decision-making process in patients with dementia. Geriatric assent provides the physician, the patient and his family the opportunity to end life with dignity. Unbearable suffering, decisional competence, and awareness of memory deficits are (...) among the clinical considerations that physicians should incorporate during the end-of-life decision-making process. However, as other societies introduce legislature granting the right of PAD, new social determinants should be considered; Mexico City is an example. Current perspectives regarding advance euthanasia directives (AED) and PAD in patients with dementia are evolving. A new perspective that hinges on the role of the family and geriatric assent should help culturally heterogeneous societies in the transition of their public health care policies regarding end-of-life choices. (shrink)

Suppose that we think it important that people have the chance to enjoy autonomous lives. An obvious corollary of this thought is that people should, if they want it, have control over the time and manner of their deaths, either ending their own lives, or by securing the help of others in doing so. So, generally, and even if we overall think that the practice should not be legalized on other grounds, it looks like common sense to think that considerations (...) of autonomy tell at least somewhat in favour of legalizing at least some acts of suicide and voluntary euthanasia. In this paper, I argue that, in fact, when we scrutinize the reasons for most end of life decisions, it turns out that they are seriously problematic from the point of view of autonomy. Full autonomy requires that we are responsible for the consequences of our decisions, and responsibility is precluded by non-voluntariness, which is to say decisions made because there are no acceptable alternatives. Since most end of life decisions are made for precisely this reason, it looks as though most such decisions are non-voluntary, and therefore undermine our autonomy: a discomforting and paradoxical claim. I argue that we should respond by taking the paradox to illuminate the context required by an autonomy-respecting framework for legalizing assisted suicide and euthanasia. People should have a legal right to a reasonable choice about when and how to die. However, this must go hand in hand with institutions that ensure, as far as possible, that such choices are made against a background which ensures, as far as possible, that people choose death clear-sightedly and not because nothing else is acceptable. (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)

Elisabeth Kübler-Ross’ On Death and Dying sparked widespread scholarly and popular interest in the emotional landscape of dying. Its publication in 1969 also coincided, roughly, with two important...

SC was an 80-year-old Israeli woman. She suffered from multiple chronic conditions, including heart disease, pulmonary congestion, chronic leukemia, diabetes, and high blood pressure. She received medication to treat her medical condition. Her pressing problems were shortness of breath and severe pain in her left leg, the result of poor blood circulation. SC resided in a rehabilitative nursing home in Tel Aviv. One night she could not sleep. She sat on her bed, unable to lie down, and screamed with pain. (...) A nurse came and gave her some analgesics with no relief of her pain. The following day the institution's social worker visited her. SC sat in the dining hall with her older sister CA. The social worker asked SC .. (shrink)

The end of Roe v. Wade has significant implications for the autonomy of pregnant patients at the end of life. At least thirty states restrict the choice to withhold/withdraw life-sustaining treatments from pregnant patients without decisional capacity, invalidating prior advance directives and prohibiting others from choosing these options for the patient. Many restrictions are based on the Roe framework, applying after “viability” or similar considerations of fetal development or prospect for live birth. Scholars have also relied on the (...) abortion framework, arguing that the restrictions impose an undue burden. The end of Roe will free states from having to craft limited restrictions designed to work around prior abortion jurisprudence. Similarly, advocates will no longer be able to draw support from the abortion framework, forcing them to rely instead on cases supporting rights to autonomy/bodily integrity in medical decision-making. (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)

In the author's experience most normal healthy adults would like to have the choice of medical help to die if they become incurably ill and find their suffering intolerable. The reasons for this are explored, based on ten years of listening and talking about the subject to a wide variety of people in many countries. The most familiar and common are the avoidance of futile suffering and the desire to retain autonomy. This paper concentrates on the dislike of losing independence (...) and its closely associated wish to continue to behave altruistically. Some reasons for the general lack of recognition of the last two are suggested. (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)

The ever-increasing technological advances of modern medicine have increased physicians’ capacity to carry out a wide array of clinical interventions near the end-of-life. These new procedures have resulted in new “types” of living where a patient’s cognitive functions are severely diminished although many physiological functions remain active. In this biomedical context, patients, surrogate decision-makers, and clinicians all struggle with decisions about what clinical interventions to pursue and when therapeutic intent should be replaced with palliative goals of care. For some (...) patients and clinicians, religious teachings about the duty to seek medical care and the care of the dying offer ethical guidance when faced with such choices. Accordingly, this paper argues that traditional Sunni Islamic ethico-legal views on the obligation to seek medical care and Islamic theological concepts of human dignity and inviolability provide the ethical grounds for non-intervention at the end-of-life and can help calibrate goals of care discussions for Muslim patients. In closing the paper highlights the pressing need to develop a holistic ethics of healthcare of the dying from an Islamic perspective that brings together multiple genres of the Islamic intellectual tradition so that it can meet the needs of the patients, clinicians and Muslim religious leaders interacting with the healthcare system. (shrink)

Bioethicists are widely agreed that patients have a right of self-determination over how they are treated. Our duty to respect this is said to be based on the principle of respect for autonomy. In end-of-life care the patient may be incompetent and unable to exercise that right. One solution is to exercise it in advance. Advance directives, which include living wills and powers of attorney for health care, enable people to decide what medical treatment they will receive later, when (...) they become incompetent. Advance directives have been criticized in two general ways. First, many critics contend that advance directives fail on a practical level to effect a patient's autonomous choices because, for example, people cannot foresee their futures well enough to make informed decisions in advance. Second, many critics contend that, practical problems aside, there is no moral authority for exercising control over one's incompetent future self. (shrink)

The ever-increasing technological advances of modern medicine have increased physicians’ capacity to carry out a wide array of clinical interventions near the end of life. These new procedures have resulted in new “types” of living where a patient’s cognitive functions are severely diminished although many physiological functions remain active. In this biomedical context, patients, surrogate decision-makers, and clinicians all struggle with decisions about what clinical interventions to pursue and when therapeutic intent should be replaced with palliative goals of care. (...) For some patients and clinicians, religious teachings about the duty to seek medical care and the care of the dying offer ethical guidance when faced with such choices. Accordingly, this paper argues that traditional Sunni Islamic ethico-legal views on the obligation to seek medical care and Islamic theological concepts of human dignity and inviolability provide the ethical grounds for non-intervention at the end of life and can help calibrate goals of care discussions for Muslim patients. In closing, the paper highlights the pressing need to develop a holistic ethics of healthcare of the dying from an Islamic perspective that brings together multiple genres of the Islamic intellectual tradition so that it can meet the needs of the patients, clinicians, and Muslim religious leaders interacting with the healthcare system. (shrink)

End-of-life issues have become an urgent problem in Japan, where people are among the longest lived in the world and most of them die while connected to high-technology medical equipment. This study examines a sensitive end-of-life ethical issue that concerns patients, families and nurses: the withdrawal of artificial food and fluid from terminally ill patients. A sample of 160 Japanese nurses, who completed a questionnaire that included forced-choice and open-ended questions, supported this act under only two specific conditions: (...) if the patient requested it, and if it relieved the patient’s suffering. They considered that the doctor’s orders, the family’s request, or the patient’s advanced age did not ethically justify this act. A small number of people who had recently lost a relative took part in semistructured interviews focusing on their experiences of their terminally ill relatives being given artificial food and fluid. Ethical, social and cultural factors surrounding this issue are discussed. (shrink)

Background: Recent research demonstrates that people sometimes make different medical decisions for others than they would make for themselves. This finding is particularly relevant to end-of-life decisions, which are often made by surrogates and require a trade-off between prolonging life and maintaining quality of life. We examine the impact of decision role, patient age, decision maker age and multiple individual differences on these treatment decisions. Methods: Participants read a scenario about a terminally ill cancer patient faced with (...) a choice between an aggressive chemotherapy regimen that will extend life by two years and palliative treatments to control discomfort for one remaining month. Participants were randomly assigned to one of three decision roles (patient, physician, or an abstract other) and the scenario randomly varied whether the patient was described as 25 or 65-years old. Results: When deciding for a 65-year old patient, approximately 60% of participants selected aggressive chemotherapy regardless of decision role. When deciding for a 25-year old patient, however, participants were more likely to select chemotherapy for a patient (physician role) or another person (abstract other) than for themselves (70%, 67%, and 59%, respectively). In addition, confidence that powerful others (eg, physicians) control one’s health, as well as respondents’ age and race, consistently predicted treatment choices. Conclusions: Patient age appears to influence medical decisions made for others but not those that we make for ourselves. These findings may help to explain the discord that often occurs when younger cancer patients refuse life-extending treatments. (shrink)

Background: Families and clinicians must often weigh competing priorities when making medical decisions for a pediatric patient at the end of life. Few empirical data exist regarding the importance that clinicians place on varying priorities and whether clinical practice conforms to decision-making standards discussed in the literature. Methods: We administered a discrete choice experiment to understand the relative importance of nine pediatric end-of-life decision-making priorities using responses from 364 nurses and physicians from three intensive care units (ICUs) (pediatric (...) ICU, pediatric cardiothoracic ICU, neonatal ICU) in a large children's hospital, with a 54% response rate. We used latent class analysis to characterize subgroups of health professionals based on their patterns of importance for the nine attributes and examined differences in class membership using multinomial logistic regression. Results: Eighty-two percent of respondents were nurses, consistent with the proportion of nurse and physician staff in the units. Latent class analysis separated our sample of health professionals into five distinct classes. All five groups rated the child's comfort and the best interests as most important but differed regarding how they valued other considerations: Group 1 rated highly consideration of the entire family and medical judgment; Group 2, the entire family's interests, parents’ preferences, and religious beliefs; Group 3, maintaining harmony between parents and medical team; Group 4, responsible use of medical resources; and Group 5, medical evidence and prolonging the child's life. Those with more years of experience were less likely to fall in Group 5 (medical evidence/life-prolonging). Profession was not associated with group membership. Conclusions: Nurses and physicians who care for dying children prioritize foremost the child's best interests and comfort but then possess varying secondary priorities about what is most important when making medical decisions. Pediatric palliative care and ethics consultative services should be aware of and prepared to address these differing concerns. (shrink)

ObjectivesThe end of life is an ethically challenging time requiring complex decision-making. This study describes ethical frameworks among physician trainees, explores how these frameworks manifest and relates these frameworks to experiences delivering end-of-life care.DesignWe conducted semistructured in-depth exploratory qualitative interviews with physician trainees about experiences of end-of-life care and moral distress. We analysed the interviews using thematic analysis.SettingAcademic teaching hospitals in the United States and United Kingdom.ParticipantsWe interviewed 30 physician trainees. We purposefully sampled across three domains we (...) expected to be associated with individual ethics in order to elicit a diversity of ethical and experiential perspectives.ResultsSome trainees subscribed to a best interest ethical framework, characterised by offering recommendations consistent with the patient’s goals and values, presenting only medically appropriate choices and supporting shared decision-making between the patient/family and medical team. Others endorsed an autonomy framework, characterised by presenting all technologically feasible choices, refraining from offering recommendations and prioritising the voice of patient/family as the decision-maker.ConclusionsThis study describes how physician trainees conceptualise their roles as being rooted in an autonomy or best interest framework. Physician trainees have limited clinical experience and decision-making autonomy and may have ethical frameworks that are dynamic and potentially highly influenced by experiences providing end-of-life care. A better understanding of how individual physicians’ ethical frameworks influences the care they give provides opportunities to improve patient communication and advance the role of shared decision-making to ensure goal-aligned end-of-life care. (shrink)

Background and objective: Assuming the hypothesis that the general practitioner can and should be a key player in making end-of-life decisions for hospitalised patients, perceptions of GPs’ role assigned to them by hospital doctors in making withdrawal decisions for such patients were surveyed.Design: Questionnaire survey.Setting: Urban and rural areas.Participants: GPs.Results: The response rate was 32.2% , and it was observed that 70.8% of respondents believed that their participation in withdrawal decisions for their hospitalised patients was essential, whereas 42.1% believed (...) that the hospital doctors were sufficiently skilled to make withdrawal decisions without input from the GPs. Most respondents were found to believe that they had the necessary skills and enough time to participate in withdrawal decisions. The last case of treatment withdrawal in hospital for one of their patients was described by 40% of respondents, of whom only 40.0% believed that they had participated actively in the decision process. The major factors in the multivariate analysis were the GP’s strong belief that his or her participation was essential , information on admission of the patient given to the GP by the hospital department , rural practice , visit to the patient dying in hospital and a request by the family to be kept informed about the patient .Conclusion: Strong interest was evinced among GPs regarding end-of-life issues, as well as considerable experience of patients dying at home. As GPs are more closely corrected to patients’ families, they may be a good choice for third-party intervention in making end-of-life decisions for hospitalised patients. (shrink)

Ramsey sees life as a gift and a trust given to people by God. This theological understanding of human life frames his judgment of the immorality of euthanasia in its many forms. Assuming Ramsey’s theological insights and framing of this issue, I highlight a particular way of thinking about euthanasia that both seems to capture the essence of the debate and does not necessarily build the moral evaluation into its description. I aim to identify and unpack the description (...) most consistent with the claims made by Ramsey of how other end-of-life (EOL) care options are seen as life choices in order to die well enough. If this project is right-headed, it can be used as a backdrop for assessing how many of the currently accepted and perhaps developing options in EOL and palliative care may or may not be morally distinct from euthanasia. Therefore, those who oppose euthanasia while wanting also to maintain the appropriateness of many of other EOL care options in certain situations are not acting inconsistently. This primarily conceptual work is done in service to those who take Ramsey’s theological framework seriously. (shrink)

Next SectionCultural differences in end-of-life care and the moral disagreements these sometimes give rise to have been well documented. Even so, cultural considerations relevant to end-of-life care remain poorly understood, poorly guided, and poorly resourced in health care domains. Although there has been a strong emphasis in recent years on making policy commitments to patient-centred care and respecting patient choices, persons whose minority cultural worldviews do not fit with the worldviews supported by the conventional principles of western (...) bioethics face a perpetual struggle in getting their care needs met in a meaningful, safe, and healing way. In this essay, attention is given to exploring why cultural differences exist, why they matter, and how health care providers should treat them in order to reduce the incidence and impact of otherwise preventable harmful moral outcomes in end-of-life care. In addressing these questions, a novel application of the renowned terror management theory will be made. (shrink)

This paper joins the debate over changes in the role of health professionals when applying advance directives to manage the decision-making process at the end of life care. Issues in relation to advance directives occur in clinical units in Lithuania; however, it remains one of the few countries in the European Union where the discussion on advance directives is not included in the health-care policy-making agenda. To encourage the discussion of advance directives, a study was designed to examine health (...) professionals’ understanding and preferences related to advance directives. In addition, the study sought to explore the views of health care professionals of the application of Advance Directives in clinical practice in Lithuania. A cross-sectional survey was conducted by interviewing 478 health professionals based at major health care centers in Kaunas district, Lithuania. The design of the study included the use of a questionnaire developed for this study and validated by a pilot study. The collected data were analyzed using standard descriptive statistical methods. The analysis of knowledge about AD revealed some statistically significant differences when comparing the respondents’ profession and gender. The analysis also indicated key emerging themes among respondents including tranquility of mind, the longest possible life expectancy and freedom of choice. Further, the study findings revealed that more than half of the study participants preferred to express their will while alive by using advance directives. The study findings revealed a low level of knowledge on advance directives among health professionals. Most health professionals agreed that AD’s improved end-of-life decision making while the majority of physicians appreciated AD as the best tool for sharing responsibilities in clinical practice in Lithuania. More physicians than nurses preferred the presence of advance directives to support their decision making in end-of-life situations. (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)

Should people be assisted to die or be given euthanasia when they are suffering from terminal medical conditions? Should they be assisted to die when they are suffering but do not have a ‘diagnosable medical illness?’ What about assisted dying for psychiatric conditions? And is there a difference morally between assisted suicide, voluntary active euthanasia and voluntary passive euthanasia?These are deep questions directly addressed or in the background of the productive discussion between Varelius and Young.1 ,2 Their focus is whether (...) doctors should assist people to die who are ‘tired of life’ and experiencing ‘existential suffering’. An example was Edward Brongersma, an 86-year-old man, who was tired of life but with no serious medical condition, who was assisted by Dr Philip Sutorius to commit suicide in 1998. In the Netherlands, where euthanasia is legal, the Dutch Supreme Court ruled in 2002 that this was wrong because "edical expertise, by its nature, does not extend to questions and complaints that do not have a sick- ness or ailment—mental or physical—as their source.3"Sutorius was convicted, but not punished.Robert Young, considering this case, concurs, concluding, "a physician may justifiably consider that an individual who is ‘tired of life’ should consult a non-medical, professional counsellor, and if that produces no change in outlook, choose suicide. Outside Switzerland, an individual who makes that choice has to then be determined enough to do so unassisted .2"I will argue that there is, within current medical ethics and human rights, a method of assisted suicide which could fall within the limits of the law. But first I will review some recent cases involving requests for dying. I will then discuss an alternative which some may argue addresses these cases, and those of …. (shrink)

In The Medical Right, Remaking Medicine in Their Image (2007) (Medical Right Report or Report), the Religious Coalition for Reproductive Choice (RCRC) applies the term "Medical Right" to refer to religiously influenced medical, bioethics and health policy organizations of the Religious Right. This extremely important, well researched Report examines how the political agenda of the Religious Right, a political force comprised of fundamentalists primarily in the Protestant and Roman Catholic traditions, impacts reproductive health care. The growing influence of medical associations (...) that apply fundamentalist Christian "biblical values" to research and policy affecting reproductive health care is explored. The Report reveals that many consortiums, think tanks, institutes, and programs apply Religious Right ideology to medical concerns under the mantle of "bioethics" or "biomedical ethics." These groups work with conservative advocacy, outreach, and legal organizations, along with politicians, to advance the policy agendas of the Religious Right. The confluence of conservative politics, fundamentalist religion, and ideologically influenced medicine and science, poses a threat to reproductive health care services, as discussed in detail in the Report. While the Report is comprehensive in its discussion of the Religious Right's involvement in reproductive health issues, it addresses in only a cursory fashion how the Medical Right engages health law and policy governing end-of-life care. The purpose of this paper is to explore this area of concern more thoroughly. (shrink)

Respect for patients’ self-determination has long been considered central to efforts to improve end-of-life care, yet efforts to promote advance directives or engage patients in end-of-life discussions are often unsuccessful. In this article, I contend that this is because the shared decision-making approach typically used in healthcare assumes patients’ capacity to make rational choices, which is not always possible in end-of-life decisions. Drawing on decision theory, behavioral psychology, and related studies of endof-life care, I present (...) a growing body of evidence that suggests the novelty, complexity, and uncertainty of end-of-life circumstances make rational and stable preferences difficult to establish. I argue that an effective decision-making approach for the terminally ill must recognize and respond to the unique characteristics of endof-life choices, including their nonrational dimensions. I conclude with a description of an initiative that appears to do so, resulting in increased patients’ satisfaction. (shrink)

An important examination of the theological, spiritual, and ethical issues surrounding death. At the end of a life of faithfulness comes our dying. To approach it as faithfully as we have our living calls for some serious forethought. Because one of the simplest facts of life—that we all die—seems like the most complicated thing we do. Not only have advances in medical technology saved lives, but they also have prolonged death, and raise a number ethical, moral, social, and (...) theological issues. How far should we go to sustain life? Is it right to withdraw artificial feeding from the dying? Is it wrong to end the lives of those in pain? No matter who we are, dealing with these sorts of choices near the end of life is difficult to do on our own.Faithful Living, Faithful Dying: Anglican Reflections on End of Life Care brings together the wisdom of a task force created by the 72nd General Convention of the Episcopal Church to study what faithful living and faithful dying mean today. The task force’s reflections, published for the first time in this book, assist individuals, congregations, and the Church as a whole to disentangle the thicket of ethical, theological, pastoral, and policy concerns. (shrink)

Philip Reed’s interesting and welcome comparison of the expressivist case against, on the one hand, prenatal testing and abortion and, on the other, physician-assisted suicide and voluntary active euthanasia, indicates the relevance of the expressivist case against the latter and its resilience to criticisms of the expressivist case against the former. Advocates of PAS/VAE commonly argue that they should be lawful out of respect for autonomy: everyone has the right to choose a physician-hastened death if they meet specified conditions such (...) as ‘terminal illness’ or ‘unbearable suffering’. The focus on autonomy is distracting, for the real work of justifying PAS/VAE is done by the argument that life with the conditions specified is not ‘worth living’. Legalisation endorses, and expresses, the judgement that it is reasonable for people with those conditions to think their lives no longer worth living and obtain medical help to end them. Were the justification to respect autonomy, why limit the choice? It is small wonder, in light of the discriminatory nature of such a judgement, that disability groups have been outspoken opponents of legalisation. As society’s ‘canaries in the coalmine’ they have warned of the …. (shrink)