Background: Patients often are confronted with the choice to allow cardiopulmonary resuscitation (CPR) should cardiac arrest occur. Typically, informed consent for CPR does not also include detailed discussion about survival rates, possible consequences of survival, and/or potential impacts on functionality post-CPR. Objective: A lack of communication about these issues between providers and patients/families complicates CPR decision-making and highlights the ethical imperative of practice changes that educate patients and families in those deeper and more detailed ways. Design: This review integrates (...) disparate literature on the aftermath of CPR and the ethics implications of CPR decision-making as it relates to and is affected by informed consent and subsequent choices for code status by seriously ill patients and their surrogates/proxies within the hospital setting. Margaret Urban Walker’s moral philosophy provides a framework to view informed consent as a practice of responsibility. Ethical considerations: Given nurses’ communicative skills, ethos of care and advocacy, and expertise in therapeutic relationships, communication around DNAR decision-making might look quite different if institutional norms in education, healthcare, law, and public policy held nurses overtly responsible for informed consent in some greater measure. Findings: Analysis from this perspective shows where changes in informed consent practices are needed and where leverage might be exerted to create change in the direction of deeper and more detailed discussions about CPR survival rates and possible consequences of survival. (shrink)

Background Doctors and the Sri Lanka Medical Association recognise the importance of do not attempt cardiopulmonary resuscitation decisions and disclosure; however, few previous studies exist examining these practices in Sri Lanka. Resuscitation decisions have seen significant changes in the UK in recent years, with a legal imperative for clear communication and a move to understand patients’ preferred outcomes before recommending clinical guidance. Methods Participants from two Sri Lankan hospitals were selected purposively to represent a range of specialties and (...) seniorities for semi-structured interview. Results Fifteen participants of varying seniorities were recruited. Practice of do not resuscitate and informing patients is highly variable; there is no definitive guidance published on best practice of these issues in Sri Lanka. Participants felt that inpatients were generally not aware of their medical conditions or treatments. With the poor social and palliative care service provision in Sri Lanka comes a pressure to involve families in the patient care, particularly at the end of life. This feeds into a culture where patient autonomy plays a subordinate role to family involvement. Participants understand the ethical need for do not resuscitate, however, it is viewed to be a consideration for when the patient is close to death. Conclusion Do not resuscitate does not appear to be a prominent feature of end-of-life care in Sri Lanka and thus consideration of the appropriateness of resuscitation is commonly left late in a patient’s deterioration. Education, inclination and respect for doctors are suggested barriers to effective inclusion of patients in their healthcare and end-of-life decisions. (shrink)

BackgroundCompetent end-of-life care is an essential component of total health care provision, but evidence suggests that it is often deficient. This study aimed to evaluate the knowledge and attitudes about key end-of-life issues and principles of good death among doctors in clinical settings.MethodsA cross-sectional study was conducted among allopathic medical doctors working in in-ward clinical settings of tertiary care hospitals in Sri Lanka using a self-administered questionnaire with open- and close-ended questions as well as hypothetical (...) clinical scenarios. Univariate and logistic regression analysis were used to identify the independent factors associated with knowledge and attitudes.ResultsOf the responders who had not been a caregiver for a terminally ill relative (n = 390), 57.9% were men with a mean age of 36.5 years (SD = 8.2). Compared to undergraduate (65.6%; n = 256), only 27.4% (n = 107) had received end-of-life care training at postgraduate level. Only 65.9% of doctors favoured disclosing terminal prognosis to patients; 27.7% of doctors were aware of advance directives; 14.6% were aware of the correct time of death when certifying brain death; 70.3% felt more comfortable in withholding than withdrawing life-sustaining treatment; 61.3% were aware of do-not-attempt cardiopulmonary resuscitation (DNACPR) decisions while 26.7% felt reluctant to administer it; 15.1% thought that all life-sustaining therapy should be withdrawn with a DNACPR decision; and only17.9% were able to name the four principles of medical ethics while 57.9% could not name a single. Participants scored a mean of 9.2 (SD = 3.9) of a maximum 14 points when tested on principles of a ‘good death’. Doctors who had pursued postgraduate studies were more likely to be aware of breaking bad news (adjusted-Odds-Ratio:1.99; 95%CI = 1.19–3.32), advance directives (adjusted-OR: 4.15; 95%CI = 2.49–6.94), aware of certifying the correct time of death (adjusted-OR:2.37; 95%CI = 1.33–4.2) and less reluctant to make DNACPR decisions (adjusted-OR:1.74; 95%CI = 1.13–2.68). Doctors who had worked in ICU were more comfortable withholding than withdrawing treatment (adjusted-OR:1.99; 95%CI = 1.2–3.31).ConclusionsKnowledge and attitudes about end-of-life care, good death and principles of medical ethics among doctors in Sri Lanka were suboptimal. Structured training of end-of-life care needs to be integrated within curricula and in-service training. (shrink)

Objectives: To analyse the decision making for end of life care for patients with cancer at a teaching hospital in Japan at two periods 10 years apart.Design and setting: Retrospective study conducted in a 550 bed community teaching hospital in Okinawa, Japan.Patients: There were 124 terminally ill cancer patients admitted either in 1989 and 1999 for end of life care with sufficient data to permit analysis.Main measurements: Basic demographic data, notification to the patient that he or she had (...) cancer, patient involvement in do not resuscitate orders, and various medical interventions which were performed in the month prior to the patient’s death were evaluated.Results: In 1989 none of the patients were notified of their diagnosis; in 1999 five patients were informed . Of the 113 patients with a written DNR order, none were involved in consenting to the DNR order. In the month before death, patients in both groups received non-palliative treatments such as feeding tube placements , total parenteral nutrition , and intravenous albumin infusion . Morphine use increased significantly in 1999 compared with the 1989 group.Conclusions: The majority of patients dying of cancer were still not informed of their diagnosis and were seldom involved in DNR decision making at a teaching hospital in Japan. There was no change in the number of potentially futile interventions that were performed but morphine use increased. Modern ethical education is urgently needed in Japanese medical practice to improve decision making process in the end of life care. (shrink)

Objectives: This study investigated Finnish physicians’ experiences of decisions concerning living wills and do not resuscitate orders and also their views on the role of patients and family members in these decisions.Design: A questionnaire was sent to 800 physicians representing the following specialties: general practice ; internal medicine ; neurology , and oncology .Results: The response rate was 56%. Most of the respondents had a positive attitude toward , and respect for living wills, and 72% reported situations in which such (...) a will would have been helpful, although experience with their use was limited. The physicians reported both benefits and problems with living wills. Thirteen per cent had completed a living will of their own. Half did not consider living wills to be reliable if they were several years old. Do not resuscitate orders were interpreted in two ways: resuscitation forbidden or only palliative care required . The respondents also documented DNR orders differently. Seventy two per cent discussed DNR decisions always or often with patients able to communicate, and even 76% discussed DNR orders with the family members of patients unable to communicate. Most respondents were able to approach a dying patient without difficulty. They also felt that education in general was needed.Conclusions: In general Finnish physicians accept living wills, but find they are accompanied by several problems. Many problems could be avoided if physicians and patients conducted progressive discussions about living wills. The differing interpretations of DNR orders are a matter of concern in that they may affect patient treatment. The promotion of patient autonomy with respect to treatment seems rather good, but the limitations of the study need to be kept in mind. (shrink)

Objectives: This study investigated Finnish physicians’ experiences of decisions concerning living wills and do not resuscitate orders and also their views on the role of patients and family members in these decisions.Design: A questionnaire was sent to 800 physicians representing the following specialties: general practice ; internal medicine ; neurology , and oncology .Results: The response rate was 56%. Most of the respondents had a positive attitude toward , and respect for living wills, and 72% reported situations in which such (...) a will would have been helpful, although experience with their use was limited. The physicians reported both benefits and problems with living wills. Thirteen per cent had completed a living will of their own. Half did not consider living wills to be reliable if they were several years old. Do not resuscitate orders were interpreted in two ways: resuscitation forbidden or only palliative care required . The respondents also documented DNR orders differently. Seventy two per cent discussed DNR decisions always or often with patients able to communicate, and even 76% discussed DNR orders with the family members of patients unable to communicate. Most respondents were able to approach a dying patient without difficulty. They also felt that education in general was needed.Conclusions: In general Finnish physicians accept living wills, but find they are accompanied by several problems. Many problems could be avoided if physicians and patients conducted progressive discussions about living wills. The differing interpretations of DNR orders are a matter of concern in that they may affect patient treatment. The promotion of patient autonomy with respect to treatment seems rather good, but the limitations of the study need to be kept in mind. (shrink)

Background In an increasingly globalized world, legal protocols related to health care that are both effective and culturally sensitive are paramount in providing excellent quality of care as well as protection for physicians tasked with decision making. Here, we analyze the current medicolegal status of brain death diagnosis with regard to end-of-life care in Japan, China, and South Korea from the perspectives of front-line health care workers. Main body Japan has legally wrestled with the (...) concept of brain death for decades. An inability to declare brain death without consent from family coupled with cultural expectations of family involvement in medical care is mirrored in other Confucian-based cultures and may complicate care for patients from these countries when traveling or working overseas. Within Japan, China, and South Korea, medicolegal shortcomings in the diagnosis of brain death act as a great source of stress for physicians and expose them to potential public and legal scorn. Here, we detail the medicolegal status of brain death diagnosis within Japan and compare it to China and South Korea to find common ground and elucidate the impact of legal ambiguity on health care workers. Conclusion The Confucian cultural foundation of multiple Asian countries raises common issues of family involvement with diagnosis and cultural considerations that must be met. Leveraging public education systems may increase awareness of brain death issues and lead to evolving laws that clarify such end-of-life issues while protecting physicians from sociocultural backlash. (shrink)

The increasing life expectancy of terminally-ill people has raised many public policy concerns about end-of-life care. Due to increased longevity and the lack of cures for illnesses like cancer and heart disease, palliative care, particularly pain management, has become an important mode OF medical therapy. Palliative care providers feel that “[h]ealth care professionals have a moral duty to provide adequate palliative care and pain relief, even if such care shortens the (...) patient’s life.” Practitioners of forensic medicine grapple with determining when to classify the death of a person formerly receiving palliative care as a non-natural death. Such classification may be paramount in the enforcement of new statutes that aim at preventing assisted suicide or monitoring the quality of health care, but it potentially places forensic medicine and palliative medicine in adversarial roles. (shrink)

Despite increasing interests and urgent needs for quality end-of-life care, there is no exact definition of what is the interval referred to as end of life or what end-of-life care is. The purpose of this article is to report our examination of terms related to end-of-life care and define end-of-life care from nursing ethics perspectives. Current terms related to end-of-life care, such as terminal care, hospice care, and palliative care, are based (...) on a medical model and are restrictive in terms of diagnosis and prognosis. Using codes of ethics for nurses as a framework, we attempt to identify people to whom nurses are responsible to provide end-of-life care and develop a definition of end-of-life care that is more inclusive and applicable to a broader range of people who would benefit from end-of-life care by nurses and other health-care providers. (shrink)

The purposes of research were to describe the neonatal clinicians' personal views and attitudes on neonatal ethical decision-making, to identify factors that might affect these attitudes and to compare the attitudes between neonatal physicians and neonatal nurses in Taiwan. Research was a cross-sectional design and a questionnaire was used to reach different research purposes. A convenient sample was used to recruit 24 physicians and 80 neonatal nurses from four neonatal intensive care units in Taiwan. Most participants agreed with suggesting (...) a do not resuscitate (DNR) order to parents for dying neonates (86.5%). However, the majority agreed with talking to patients about DNR orders is difficult (76.9%). Most participants agree that review by the clinical ethics committee is needed before the recommendation of ‘DNR’ to parents (94.23%) and nurses were significantly more likely than physicians to agree to this (p=0.043). During the end-of-life care, most clinicians accepted to continue current treatment without adding others (70%) and withholding of emergency treatments (75%); however, active euthanasia, the administration of drug to end-of-life, was not considered acceptable by both physicians and nurses in this research (96%). Based on our research results, providing continuing educational training and a formal consulting service in moral courage for neonatal clinicians are needed. In Taiwan, neonatal physicians and nurses hold similar values and attitudes towards end-of-life decisions for neonates. In order to improve the clinicians' communication skills with parents about DNR options and to change clinicians' attitudes for providing enough pain-relief medicine to dying neonates, providing continuing educational training and a formal consulting service in moral courage are needed. (shrink)

Medical assistance in dying was legalized by the Supreme Court of Canada in June 2016 and became a legal, viable end of life care option for Canadians with irremediable illness and suffering. Much attention has been paid to the balance between physicians’ willingness to provide MAiD and patients’ legal right to request medically assisted death in certain circumstances. In contrast, very little attention has been paid to the challenge of making MAiD accessible to vulnerable populations. The purpose of (...) this paper was to examine the extant literature and resources that are available on the provision of MAiD in Canada. We found that the provision of EOLC in Canada offers insufficient access to palliative and EOLC options for Canadians and that vulnerable Canadians experience disproportional barriers to accessing these already limited resources. Consequently, we argue that palliative care, hospice care and MAiD must be considered a spectrum of EOLC that is inclusive and accessible to all Canadians. We conclude by imploring Canadian healthcare professionals, policy makers and legislators to consider MAiD as a viable EOLC option for all Canadians. (shrink)

Existing regulation of end-of-life care is flawed. Problems include poorly-designed laws, policies, ethical codes, training, and funding programs, which often are neither effective nor helpful in guiding decision-making. This leads to adverse outcomes for patients, families, health professionals, and the health system as a whole. A key factor contributing to the harms of current regulation is a siloed approach to regulating end-of-life care. Existing approaches to regulation, and research into how that regulation could be improved, have (...) tended to focus on a single regulatory instrument (e.g., just law or just ethical codes). As a result, there has been a failure to capture holistically the various forces that guide end-of-life care. This article proposes a response to address this, identifying “regulatory space” theory as a candidate to provide the much-needed holistic insight into improving regulation of end-of-life care. The article concludes with practical implications of this approach for regulators and researchers. (shrink)

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

BackgroundDecisions about limitations of life sustaining treatments are made for end-of-life patients in intensive care units. The aim of this research was to explore the professional and ethical attitudes and experiences of medical professionals on treatment of end-of-life patients in ICUs in the Republic of Croatia.MethodsA cross-sectional study was conducted among physicians and nurses working in surgical, medical, neurological, and multidisciplinary ICUs in the total of 9 hospitals throughout Croatia using a questionnaire with closed and open type (...) questions. Exploratory factor analysis was conducted to reduce data to a smaller set of summary variables. Mann–Whitney U test was used to analyse the differences between two groups and Kruskal–Wallis tests were used to analyse the differences between more than two groups.ResultsLess than third of participants stated they were included in the decision-making process, and physicians are much more included than nurses. Sixty two percent of participants stated that the decision-making process took place between physicians. Eighteen percent of participants stated that ‘do-not-attempt cardiopulmonary resuscitations’ orders were frequently made in their ICUs. A decision to withdraw inotropes and antibiotics was frequently made as stated by 22.4% and 19.9% of participants, respectively. Withholding/withdrawing of LST were ethically acceptable to 64.2% of participants. Thirty seven percent of participants thought there was a significant difference between withholding and withdrawing LST from an ethical standpoint. Seventy-nine percent of participants stated that a verbal or written decision made by a capable patient should be respected. Physicians were more inclined to respect patient’s wishes then nurses with high school education. Nurses were more included in the decision-making process in neurological than in surgical, medical, or multidisciplinary ICUs. Male participants in comparison to female, and physicians in comparison to nurses with high school and college education displayed more liberal attitudes about LST limitation.ConclusionsDNACPR orders are not commonly made in Croatian ICUs, even though limitations of LST were found ethically acceptable by most of the participants. Attitudes of paternalistic and conservative nature were expected considering Croatia’s geographical location in Southern Europe. (shrink)

We describe the case of an eighty‐four‐year‐old man with disseminated lung cancer who had been receiving palliative care in the hospital and was found by nursing staff unresponsive, with clinically obvious signs of death, including rigor mortis. Because there was no documentation to the contrary, the nurses commenced cardiopulmonary resuscitation and called a code blue, resulting in resuscitative efforts that continued for around twenty minutes. In discussion with the hospital ethicist, senior nurses justified these actions, mainly (...) citing disciplinary and medicolegal concerns. We argue that moral harms arise from CPR performed on a corpse and that legal concerns about failing to perform it are unfounded. We contend that such efforts are an unintended consequence of managerialist policies mandating do‐not‐resuscitate orders and advance care plans and of defensive practices that can value the interests of institutions and practitioners over those of patients. Health management teaching should include managerialism and its pitfalls, while clinician training should prioritize ethical reasoning and legal knowledge over defensive practice. (shrink)

Background: Decisions of patients, families, and health care providers about medical care at the end of life depend on many factors, including the societal culture. A pan-European study was conducted to determine the frequency and types of end of life practices in European intensive care units , including those in Israel. Several results of the Israeli subsample were different to those of the overall sample.Objective: The objective of this article was to explore these differences and (...) provide a possible explanation based on the impact of culture on end of life decision making.Method: All adult patients admitted consecutively to three Israeli ICUs who died or underwent any limitation of life saving interventions between 1 January 1999 and 30 June 2000 were studied prospectively . These patients were compared with a similar sample taken from the larger study carried out in 37 European ICUs. Patients were followed until discharge, death, or 2 months from the decision to limit therapy. End of life decisions were prospectively organised into one of five mutually exclusive categories: cardiopulmonary resuscitation , brain death, withholding treatment, withdrawing treatment, and active shortening of the dying process . The data also included patient characteristics , specific therapies limited, and the method of SDP.Results: The majority of patients had treatment withheld, none underwent SDP, 62 received CPR , 31 had brain death , and 18 underwent withdrawal of treatment . The primary reason given for limiting treatment was that the patient was unresponsive to therapy . End of life discussions were held with 132 families , the vast majority of which revolved around withholding treatment and the remainder concerned withdrawing treatment .There was a statistically significant association between the type of end of life decision and region—that is, the northern region of Europe, the central region, the southern region, and Israel.Conclusions: Regional culture plays an important part in end of life decision making. Differences relating to end of life decision making exist between regions and these differences can often be attributed to cultural factors. Such cultures not only affect patients and their families but also the health care workers who make and carry out such decisions. (shrink)

Most bioethicists and professional medical societies condemn the practice of ?slow codes.? The American College of Physicians ethics manual states, ?Because it is deceptive, physicians or nurses should not perform half-hearted resuscitation efforts (?slow codes?).? A leading textbook calls slow codes ?dishonest, crass dissimulation, and unethical.? A medical sociologist describes them as ?deplorable, dishonest and inconsistent with established ethical principles.? Nevertheless, we believe that slow codes may be appropriate and ethically defensible in situations in which cardiopulmonary resuscitation (...) (CPR) is likely to be ineffective, the family decision makers understand and accept that death is inevitable, and those family members cannot bring themselves to consent or even assent to a do-not-resuscitate (DNR) order. In such cases, we argue, physicians may best serve both the patient and the family by having a carefully ambiguous discussion about end-of-life options and then providing resuscitation efforts that are less vigorous or prolonged than usual. (shrink)

Background End-stage renal disease (ESRD) is the final stage of chronic kidney disease. Yet dialysis is not suitable for all ESRD patients. Moreover, while shared decision-making (SDM) is the preferred model for making medical decisions, little is known about SDM between nephrology nurses and ESRD patients in Israel. Research Objective Assessing the views, attitudes, practices, and ethical dilemmas of nephrology nurses in Israel regarding SDM with ESRD patients. Methods Using the descriptive quantitative approach, questionnaires were completed by 444 nephrology (...) nurses in Israel. In addition to conducting descriptive statistics, t-tests for independent samples, f-tests for analysis of variance, and both tests for independence were also performed. Ethical Considerations The research aims, expected advantages and risks have been explained to respondents before completing the questionnaire to secure informed consent. Anonymity and confidentiality were ensured throughout the study. The study was approved by the Research Ethics Committee at the University of Haifa (Approval # 411/21). Results About one-third (30%–36.5%) of nurses reported discussing quality of life issues with ESRD patients, asking about their advance directives/power of attorney, exploring cultural/religious beliefs in end-of-life care, and ask about their preferred place of death. Nurses who convey high levels of patient-centered care (68.9%, p<0.0001), have high end-of-life training (76.2%, p<0.0001), and report cooperating with interdisciplinary teams (63.8%, p = 0.0415), also reported higher SDM practices than others. Nurses who refer less patients to palliative care (70%, p<0.0001) reported higher involvement in SDM compared to other nurses. Conclusions Nephrology nurses in Israel do not tend to implement the SDM model, despite its potential for improving quality of life for ESRD patients and their families and increasing conservative care options. Policy makers and educators in Israel should develop and implement training programs and support in the workplace, to enhance SDM between nephrology nurses and ESRD patients. (shrink)

Those involved in end-of-life decision making must take into account both legal and ethical issues. This book starts with a critical reflection of ethical principles including ideas such as moral status, the value of life, acts and omissions, harm, autonomy, dignity and paternalism. It then explores the practical difficulties of regulating end-of-life decisions, focusing on patients, healthcare professionals, the wider community and issues surrounding 'slippery slope' arguments. By evaluating the available empirical evidence, the author identifies preferred ways to regulate decisions (...) and minimise abuses at the end of life, and outlines an ethical theory which can provide practical guidance for those engaged in end-of-life decisions"--Provided by publisher. (shrink)

Although clinical ethics consultation has existed for more than 40 years in the USA and Europe, it was not available in Bulgaria until recently. In introducing clinical ethics consultation into our country, the Modular, Ethical, Treatment, Allocation of resources, Process (METAP) methodology has been preferred because of its potential to be used in resource-poor settings and its strong educational function. This paper presents the results of a METAP evaluation in a hospital palliative care ward in the town of (...) Vratsa. The evaluation was based on Beauchamp and Childress’ four principles of biomedical ethics and involves implementation of specific instruments for clinical ethics decision-making. Research tasks emphasised analyses of ethics meetings in the ward. Data were processed by SPSS v.24 using descriptive statistical analysis. Altogether, 32 ethics meetings of an average duration 20.63 min were conducted on cases involving critically ill patients. Most of the participants (86.0%) expressed satisfaction with the ethics process. The principlist approach supported resolution of conflicts between autonomous patients and their relatives, clarified definitions of “medical benefit” and “social good,” and enabled assessments of the risk of unequal treatment. Even as the specific research tasks were achieved, further participant follow-up is necessary to identify any improvement in healthcare personnel’s ethical competence. METAP worked well in end-of-life care settings. Participants experienced several benefits, including improved team communication, better understanding of patient preferences, and confidence in the correctness of decisions. Despite the significant educational potential of METAP, the need for additional and ongoing ethics training of health professionals should not be underestimated. (shrink)

In this discussion paper we consider the influence of ethnicity, religiosity, spirituality and health literacy on Advance Care Planning for older people. Older people from cultural and ethnic minorities have low access to palliative or end-of-life care and there is poor uptake of advance care planning by this group across a number of countries where advance care planning is promoted. For many, religiosity, spirituality and health literacy are significant factors that influence how they (...) make end-of-life decisions. Health literacy issues have been identified as one of the main reasons for a communication gaps between physicians and their patients in discussing end-of-life care, where poor health literacy, particularly specific difficulty with written and oral communication often limits their understanding of clinical terms such as diagnoses and prognoses. This then contributes to health inequalities given it impacts on their ability to use their moral agency to make appropriate decisions about end-of-life care and complete their Advance Care Plans. Currently, strategies to promote advance care planning seem to overlook engagement with religious communities. Consequently, policy makers, nurses, medical professions, social workers and even educators continue to shape advance care planning programmes within the context of a medical model. The ethical principle of justice is a useful approach to responding to inequities and to promote older peoples’ ability to enact moral agency in making such decisions. (shrink)

ABSTRACT In keeping with the pre‐eminent status accorded autonomy within Australia, Europe, and the United States, medical practice requires that patients authorize do‐not‐resuscitate (DNR) orders, intended to countermand the default practice in hospitals of instituting cardiopulmonary‐resuscitation (CPR) on all patients experiencing cardio‐pulmonary arrest. As patients typically do not make these decisions proactively, however, family members are often asked to act as surrogate decision‐makers and decide on the patient's behalf. Although the appropriateness of patients or their families having to (...) decide about the provision of CPR has been challenged, there has been little examination of how patients and their families talk about and negotiate such decisions, particularly in the context of the patient's imminent death. In this article, part of a larger study analysing interviews with 28 patients (13 female) with cancer within weeks of their death, and 20 others (predominantly family) attending, we argue that a common assumption underpinning participants' talk about the DNR decision (i.e. forgoing CPR) is that it requires a choice between life and death. Using illustrative examples, we demonstrate that in making decisions about CPR, patients and their families are implicitly required to make moral judgements about the value of the patient's life, including their relationships with significant others. We identify some implications of these empirical observations for the development of ethically appropriate policies and practices regarding patient autonomy and surrogacy at the end of life. (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)

In lieu of an abstract, here is a brief excerpt of the content:Nursing Ethics:A Selected Bibliography, 1987 to PresentDoris Mueller Goldstein (bio)The ethics of nursing is emerging as a discipline distinct from bioethics or medical ethics. Although these areas have many concerns in common, nurses are demonstrating that their perspective can make a unique contribution to ethical debate.An especially dynamic area of discussion within nursing ethics is the philosophy of caring. The work on moral development by Harvard educator Carol (...) Gilligan in her book, In a Different Voice, is pivotal in this discussion (IV B, Cooper 1989). Jean Watson, a nurse at the University of Colorado Center for Human Caring, also has written extensively on the philosophy of caring. She states that "an ethic of caring has a distinct moral position: caring is attending and relating to a person in such a way that the person is protected from being reduced to the moral status of objects...." (I, Watson 1988).Even as the philosophy of caring becomes more predominant, however, nurses today are often drawn away from the caring role by forces prevalent in the modern hospital. First, modern technology can divert the nurse's attention away from the patient and toward the operation of complex equipment, and second, large hospitals are often managed as bureaucracies (I, Fitzpatrick 1988).A recent study examined the frequency and seriousness of ethical issues encountered in nursing practice (IV A, Berger 1991). A survey instrument that included 32 potential ethical issues was developed by the authors. Respondents were asked to identify what kinds of issues concerned them and with what frequency, and to indicate what resources were used to cope with these dilemmas. The study found that nurses were frequently faced with inadequate staffing, heroic measures for prolonging life, inappropriate resource allocation, situations where patients are being discussed inappropriately, and coping with irresponsible activity of colleagues.The variety of ethical dilemmas encountered on a daily basis by nurses and their expressed interest in developing a moral grounding for the profession of [End Page 177] nursing, along with increased attention to ethical issues in nursing education have led to an explosion in the literature on these topics. In the preparation of this bibliography over 1,000 citations were retrieved in computer searches of various databases: BIOETHICSLINE, MEDLINE and CATLINE (National Library of Medicine), CINAHL (Current Index to Nursing and Allied Health Literature), BOOKS IN PRINT PLUS, and ETHX (the online public access catalog for articles at the National Reference Center for Bioethics Literature). What is offered here is a small sampling of that literature. Books and special issues of periodicals are briefly annotated, but citations to articles are simply arranged by broad subject, and within that, alphabetically by author. The subcategories reflect the topics receiving the most discussion in current literature.This bibliography updates "The Ethics of Nursing: A Selected Bibliography," by Doris Mueller Goldstein, which covered the earlier literature and was published as an appendix to Ethical Decision Making in Nursing Administration (I, Silva 1990).I. BooksAustralian Nursing Federation. Ethics: Nursing Perspectives, vol. 2. North Fitzroy, Victoria: The Federation, 1989. 102 p. (Publisher's address: 373-375 St. Georges Road, postal code 3068.) The National Professional Development Committee of Australia fostered the publication of a second volume of papers on nursing ethics. Articles cover patients' rights, ethical theory in decisionmaking behaviors, the nurse and the DNR order, and whistleblowing. Several appendices represent difficult-to-obtain documents, such as the RANF (Royal Australian Nursing Federation) position statements on terminal care, AIDS and occupational health, professional practice problems, and conscientious objection.Bandman, Elsie L., and Bandman, Bertram. Nursing Ethics Through the Life Span. 2nd ed. Norwalk, CT: Appleton & Lange, 1990. 288 p. Following an extensive review of the moral foundations of decision making in nursing, the authors take the reader through a chronology of nursing ethics issues as they occur in the human life span, beginning with the procreative family period and concluding with the end of life. Each chapter contains discussion questions—an aid to educators using this as a textbook.Benjamin, Martin, and Curtis, Joy. Ethics in Nursing. 2nd ed. New York: Oxford University Press, 1986. 206 p. An overview of the nature of ethical inquiry and theory is followed by... (shrink)

In this chapter, we consider how a commitment to acting in a child’s interestsChild's interests can be brought to bear on three specific ethical quandaries that face those caring for children at the end of lifeEnd-of-life, and how such a commitment might seem to cohere or be in tension with other principles such as autonomyAutonomy and justiceJustice. We examine the status of ‘do not resuscitateDo Not Resuscitate ’ orders in children and argue that they cannot exist in children in the (...) same form as in adults. Since the standard of ethical permissibility is set by the interestsInterest of the child, rather than the preferencesPreferences of parentParents or doctor, there is no single person with authorityAuthority to agree an adult-style DNRDo Not Resuscitate. Looking at clinically-assisted feeding or hydrationHydration, we argue that withholding, withdrawing, commencing or continuing it each constitutes an intervention and needs to be carefully justified by considering its burdens and harmsHarm in the broadest sense reasonableReasonable. Finally, we consider ‘palliative sedationPalliative sedation’ and suggest that, while there are circumstances under which sedation is an inevitable result of adequate symptom controlSymptom control, impaired consciousness does not of itself represent a way to control symptoms and should not be deliberately induced. (shrink)

Background: The decision whether to initiate cardiopulmonary resuscitation may sometimes be ethically complex. While studies have addressed some of these issues, along with the role of nurses in cardiopulmonary resuscitation, most have not considered the importance of nurses acting as advocates for their patients with respect to cardiopulmonary resuscitation. Research objective: To explore what the nurse’s advocacy role is in cardiopulmonary resuscitation from the perspective of patients, relatives, and health professionals in the Basque Country (Spain). (...) Research design: An exploratory critical qualitative study was conducted from October 2015 to March 2016. Thematic analysis was used to analyse the data. Participants: Four discussion groups were held: one with patients and relatives (n = 8), two with nurses (n = 7 and n = 6, respectively), and one with physicians (n = 5). Ethical considerations: Approval was obtained from the Basque Country Clinical Research Ethics Committee. Findings: Three significant themes were identified: (a) accompanying patients during end of life in a context of medical dominance, (b) maintaining the pact of silence, and (c) yielding to legal uncertainty and concerns. Discussion: The values and beliefs of the actors involved, as well as pre-established social and institutional rules reduced nurses’ advocacy to that of intermediaries between the physician and the family within the hospital environment. On the contrary, in primary health care, nurses participated more actively within the interdisciplinary team. Conclusion: This study provides key information for the improvement and empowerment for ethical nursing practice in a cardiac arrest, and provides the perspective of patients and relatives, nurses and physicians. (shrink)

Background There is lack of consensus in the bioethics literature regarding the use of cardiopulmonary resuscitation (CPR) for organ-preserving purposes. In this study, we assessed the perspectives of clinicians in critical care settings to better inform donor management policy and practice.Methods An online anonymous survey of members of the Society of Critical Care Medicine that presented various scenarios about CPR for organ preservation.Results The email was sent to 10,340 members. It was opened by 5,416 (52%) of members (...) and 405 members (4%) completed the survey with few missing data. A majority of respondents (81%) answered that donation status should not influence whether CPR is performed on an imminently dying patient. There was very strong agreement (>85%) that 1) CPR should be performed on a registered donor who experiences a cardiac arrest with an unknown code status before death by neurological criteria (DNC) and 2) CPR should be performed if the patient is not a registered donor and experiences cardiac arrest but the surrogate/power of attorney (POA) has not yet been approached regarding code status and donation. When a registered donor with a DNR order experiences cardiac arrest before DNC, 98% of respondents would not perform CPR. However, after DNC, respondents were evenly divided on whether they would (49%) or would not (51%) perform CPR on a registered donor with an undocumented code status. When asked whether consent should be required for CPR for organ-preserving purposes, 39% answered “Yes” when a patient arrests before DNC and 48% answered “Yes” when a patient arrests after DNC (P = 0.2).Conclusions The majority of respondents did not consider donor status relevant to CPR decisions before DNC, and virtually all would respect a DNR order in a registered donor before DNC. Respondents were divided about the need for an affirmative consent for CPR for organ-preserving purposes both before and after DNC. (shrink)

Few institutions have published reviews concerning the case consultation history of their ethics committees, and policies used by ethics committees to address inappropriate treatment are infrequently reviewed. We sought to characterize the operation of our institution’s ethics committee as a representative example of a volunteer ethics committee, and outline its use of a policy to address inappropriate treatment, the Conscientious Practice Policy. Patients were identified for retrospective review from the ethics consultation database. Patient demographics, medical admission information, and consultation (...) information were obtained from the medical record. Consultation notes were analyzed with directed content analysis. The use of the CPP was documented in each case. Groups of interest were compared via two-sample t-tests. There were 178 consultations between 2013 and 2018. The majority originated from medicine services. The most common consultation reasons were end-of-life balances of acute and palliative care, best interest standard, medical futility, and code status and intubation status. Average age was 65.5 years and average hospitalization before consultation was 51.4 days. 92 patients had a code status change that occurred after consultation. A policy to address inappropriate treatment was used in 42 of the consultations. Bivariate analysis demonstrated a reduction in policy use over time, with use in 32.1% of consultations from 2013 to 2016 and 11.4% of consultations 2017–2018, p = 0.002. End-of-life issues were the most common reason for consultation. Our consultation volume was lower than previously-published reports. A policy used to address inappropriate treatment was frequently used, although use decreased over time. (shrink)

Most elderly patients die with an order in place that they not be given cardiopulmonary resuscitation . Surveys have shown that many elderly in different parts of the world want to be resuscitated, but may lack knowledge about the specifics of cardiopulmonary resuscitation . Data from countries other than the US is limited, but differences in physician and patient opinions by nationality regarding CPR do exist. Physicians’ own preferences for CPR may predominate in the DNR decision making process (...) for their patients, and many physicians may not want the participation of the elderly or believe that it is necessary. More complete and earlier discussions of a wider range of options of care for patients at the end of life have been advocated. The process ought to include education for patients about the process and efficacy of CPR, and for physicians on how to consider the values and levels of knowledge of their patients, whose preferences may differ from their own. (shrink)

Some health care organizations allow physicians to withhold cardiopulmonary resuscitation from a patient, despite patient or surrogate requests that it be provided, when they believe it will be more harmful than beneficial. Such cases usually involve patients with terminal diagnoses whose medical teams argue that aggressive treatments are medically inappropriate or likely to be harmful. Although there is state-to-state variability and a considerable judicial gray area about the conditions and mechanisms for refusals to perform CPR, (...) class='Hi'>medical teams typically follow a set of clearly defined procedures for these decisions. The procedures are based on the principle of nonmaleficence and typically include consultation with hospital ethics committees, reflecting the guidelines of relevant professional associations. Ethical debates about when CPR can and should be limited tend to rely more on discussions of theory, principles, and case studies than systematic empirical study of the situations in which such limitations are applied. Sociologists of bioethics call for empirical study, arguing that what ethicists and health professionals believe they are doing when they draft policies or invoke principles does not always mirror what is happening on the ground. In this article, we begin the task of modeling the empirical analyses sociologists call for, focusing on a cohort at Massachusetts General Hospital. We inductively analyzed ethics committee notes and medical records of nineteen patients whose surrogates did not accept the decision to withhold CPR. (shrink)

Background: After over 4 years since medical assistance in dying legalization in Canada, there is still much uncertainty about how this ruling has affected Canadian society. Objective: To describe the positive aspects of medical assistance in dying legalization from the perspectives of hospice palliative care providers engaging in medical assistance in dying. Design: In this qualitative descriptive study, we conducted an inductive thematic analysis of semi-structured interviews with hospice palliative care providers. Participants and (...) setting: Multi-disciplinary hospice palliative care providers in acute, community, residential, and hospice care in Vancouver and Toronto, Canada, who have engaged in end-of-life care planning with patients who have inquired about and/or requested medical assistance in dying. Ethical considerations: The research proposal was approved by University of British Columbia Research Ethics Board in Vancouver and University Health Network in Toronto. Participants were informed regarding the research goals, signed a written consent, and were assigned pseudonyms. Results: The 48 participants included hospice palliative care physicians (n = 22), nurses (n = 15), social workers (n = 7), and allied health providers (n = 4). The average interview length was 50 min. Positive aspects of medical assistance in dying legalization were identified at (1) the individual level: (a) a new end-of-life option, (b) patients’ last chance to express control over their lives, (c) patient and family comfort and relief, and (d) a unique learning experience for hospice palliative care providers; (2) the team level: (a) supportive collegial relationships, (b) broadened discussions about end-of-life and palliative care, and (c) team debriefs provide opportunities for education and support; and (3) the institutional level: (a) improved processes to facilitate the implementation logistics. Conclusion: While being involved in the medical assistance in dying process is complex and challenging, this study sheds light on the positive aspects of medical assistance in dying legalization from the hospice palliative care provider’s perspectives. Medical Assistance in Dying legalization has resulted in improved end-of-life conversations between hospice palliative care providers, patients, and their families. Improved communication leads to a better understanding of patients’ end-of-life care plans and bridges some of the existing gaps between hospice palliative care and medical assistance in dying. (shrink)

This article analyses domestic and foreign reactions to a 2008 report in the British Medical Journal on the complementary and, as argued, synergistic relationship between palliative care and euthanasia in Belgium. The earliest initiators of palliative care in Belgium in the late 1970s held the view that access to proper palliative care was a precondition for euthanasia to be acceptable and that euthanasia and palliative care could, and should, develop together. Advocates (...) of euthanasia including author Jan Bernheim, independent from but together with British expatriates, were among the founders of what was probably the first palliative care service in Europe outside of the United Kingdom. In what has become known as the Belgian model of integral end-of-life care, euthanasia is an available option, also at the end of a palliative care pathway. This approach became the majority view among the wider Belgian public, palliative care workers, other health professionals, and legislators. The legal regulation of euthanasia in 2002 was preceded and followed by a considerable expansion of palliative care services. It is argued that this synergistic development was made possible by public confidence in the health care system and widespread progressive social attitudes that gave rise to a high level of community support for both palliative care and euthanasia. The Belgian model of so-called integral end-of-life care is continuing to evolve, with constant scrutiny of practice and improvements to procedures. It still exhibits several imperfections, for which some solutions are being developed. This article analyses this model by way of answers to a series of questions posed by Journal of Bioethical Inquiry consulting editor Michael Ashby to the Belgian authors. (shrink)

Our hospital routine requires that all new admissions must be asked about their code status. It is not uncommon for an otherwise healthy patient to request that a do-not-resuscitate order be placed in their chart. Presumably, these patients who wish to have a DNR order are acting on the belief that should an unforeseen, irreversible condition occur that leads to a cardiac arrest, they would not want to undergo resuscitation. Tragically, we have witnessed several instances in which potentially life-saving (...) interventions were withheld in viable patients in non-arrest settings for reversible conditions because the patients had a DNR order in the chart. Unfortunately, this happens when the treating physicians are not aware of the limited scope of a DNR order and instead use the order as a blanket prohibition against all components of resuscitation. This communication failure is due to misconceptions that patients and their physicians have with regard to such orders. The medical community is well overdue to improve the end-of-life decisions offered to patients beyond relying on the outdated term DNR.LIMITATIONS OF DNR ORDERSDespite the major advances in critical care medicine in the past few decades, doctors have not substantially improved their ability to address end-of-life decisions any better than by using the all-encompassing term DNR. Currently, the term is generally accepted as an order to prohibit the use of interventions to reverse a cardiac or pulmonary arrest.1 2 What is frequently forgotten with the DNR order is that …. (shrink)

The purpose of this study is to analyze the experience of hope that appears in a parent's blog presenting everyday life while caring for a child with Trisomy 18 (Edwards syndrome). The author, Rebekah Peterson, began her blog on 17 March 2011 and continues to post information on her son Aaron's care. The analysis of hope in the blog is carried out using a mixed methodology: initial and focused coding using Charmaz's constructed grounded theory and elements of Colaizzi's method. (...) Each aspect of hope is coded through the blog author's statements, from which three main aspects of hope emerge: hope for the longest possible presence of Aaron with his family, hope for control over situations, pain, and symptoms, and existential facets of hope. These various aspects reveal to what extent the experience of hope is unique. Additionally, analyzing the experience of parental hope uncovers the additional problem of inappropriate communication by health care professionals (HCPs) in intensive care units, particularly when discussing the termination of causal treatment. The problem may be solved through proper education for HCPs and serious consideration of parental involvement in order to properly elaborate guidelines on this issue. The three main aspects of parental hope discussed in this paper might expand knowledge on the issue, helping HCPs to better understand the parents' experience of care and to help sustain parental hope in pediatric palliative care. (shrink)

The authors’ aim is to bring to the attention of readers the inadequacies of care for people in Hungary who are terminally ill. They believe that both objective and subjective factors cause these inadequacies. Most of these factors arise from moral dilemmas that could be eased or even solved if ethics education had a much more prominent place in the nursing curriculum. Even if nurses would not become automatically better persons morally, a much wider knowledge of medical/nursing ethics (...) could significantly improve nursing care both before and at the end of life. Although the article is also critical of the nursing care provided, it is not its purpose to make any generalizations. The study utilized selected passages from essays written by 76 practicing nurses on their personal experience of ethical dilemmas in their work environment, and a questionnaire administered to 250 students (registered nurses and health care students) studying for a college degree. This article is written by two authors who have formed an unusal alliance: a registered nurse with 29 years’ experience of bedside nursing, but who is currently a teacher of nursing ethics at a local health college, and a lawyer turned bioethicist. (shrink)

Abstract Context: Established in 1997, Summa Health System’s Medical Ethics Committee (EC) serves as an educational, supportive, and consultative resource to patients/families and providers, and serves to analyze, clarify, and ameliorate dilemmas in clinical care. In 2009 the EC conducted its 100th consult. In 2002 a Palliative Care Consult Service (PCCS) was established to provide supportive services for patients/families facing advanced illness; enhance clinical decision-making during crisis; and improve pain/symptom management. How these services affect one (...) another has thus far been unclear. Objectives: This study describes EC consults: types, reasons, recommendations and utilization, and investigates the impact the PCCS may have on EC consult requests or recommendations. Methods: Retrospective reviews of 100 EC records explored trends and changes in types of consults, reasons for consults, and EC recommendations and utilization. Results: There were 50 EC consults each in the 6 years pre- and post-PCCS. Differences found include: (1) a decrease in number of reasons for consult requests (133–62); (2) changes in top two reasons for EC consult requests from ‘Family opposed to withdrawing life-sustaining treatment (LST)’ and ‘Patient capacity in question’ to ‘Futility’ and ‘Physician opposed to providing LST’; (3) changes in top two recommendations given by the EC from ‘Emotional Support for Patient/Family’ and ‘Initiate DNR Order’ to ‘Comfort Care’ and ‘Withdraw Treatment.’ Overall, 88% of recommendations were followed. Conclusion: PCCS availability and growth throughout the hospital may have influenced EC consult requests. EC consults regarding family opposition to withdrawing LST and EC recommendations for patient/family support declined. Content Type Journal Article Pages 1-16 DOI 10.1007/s10730-011-9170-9 Authors Jessica Richmond Moeller, Department of Psychiatry and Behavioral Sciences, Akron General Medical Center, 400 Wabash Ave, Akron, OH 44307, USA Teresa H. Albanese, Health Services Research and Education Institute, Summa Health System and Northeast Ohio Medical University, 55 Arch St., Suite 1A, Akron, OH 44304, USA Kimberly Garchar, Kent State University, 6000 Frank Ave., N.W, North Canton, OH 44720, USA Julie M. Aultman, Department of Family and Community Medicine, Northeast Ohio Medical University, P.O. Box 95, Rootstown, OH 44272, USA Steven Radwany, Palliative Care and Hospice Services, Summa Health System and Northeast Ohio Medical University, 55 Arch St., Suite 1A, Akron, OH 44304, USA Dean Frate, Internal Medicine, Palliative Care and Hospice Services, Summa Health System and Northeast Ohio Medical University, 55 Arch St., Suite 1A, Akron, OH 44304, USA Journal HEC Forum Online ISSN 1572-8498 Print ISSN 0956-2737. (shrink)

Background: Since the passage of the Patient Self-Determination Act, numerous policy mandates and institutional measures have been implemented. It is unknown to what extent those measures have affected end-of-life care, particularly with regard to the do-not-resuscitate order.Methods: Retrospective cohort study to assess associations of the frequency and timing of DNR orders with advance directive status, patient demographics, physician’s specialty and extent of documentation of discussion on end-of-life care.Results: DNR orders were more frequent for patients on a medical (...) service than on a surgical service and were made earlier in the hospital stay for medicine than for surgical patients . 22.18% of all patients had some form of an advance directive in their chart, yet this variable had no impact on the frequency or timing of DNR ordering. Documentation of DNR discussion was significantly associated with the frequency of DNR orders and the time from DNR to death .Conclusions: The physician’s specialty continues to have a significant impact on the frequency and timing of DNR orders, while advance directive status still has no measurable impact. Additionally, documentation of end-of-life discussions is significantly associated with varying DNR ordering rates and timing. (shrink)

Hospice is the premiere end of life program in the United States, but its requirement that patients forgo disease-directed therapies and that they have a prognosis of 6 months or less means that it serves less than half of dying patients and often for very short periods of time. Palliative care offers careful attention to pain and symptom management, added support for patients and families, and assistance with difficult medical decision making alongside any and all desired (...) class='Hi'>medical treatments, but it does not include a comprehensive system of care as is provided by hospice. The practice of palliative care and hospice is filled with sometimes overt (requests for hastened death in an environment where such acts are legally prohibited) and other times covert (the delay in palliative care referral because the health care team believes it will undermine disease directed treatment) ethical issues. The contributors to this volume use a series of case presentations within each chapter to illustrate some of the palliative care and hospice challenges with significant ethical dimensions across the three overarching domains: 1) care delivery systems; 2) addressing the many dimensions of suffering; and 3) difficult decisions near the end of life. The contributors are among the most experienced palliative care, hospice and ethics scholars in North America and Western Europe. Each has been given relatively free reign to address what they feel are the most pressing ethical challenges within their domain, so a wide range of positions and vantage points are represented. As a result, the volume provides a very diverse ethical exploration of this relatively young field that can deepen, stretch, and at times confront any simple notion of the challenges facing patients, their families, professional caregivers, and policy makers. (shrink)

In a recent article,1Riisfeldt attempts to show that the principle of double effect (PDE) is unsound as an ethical principle and problematic in its application to palliative opioid and sedative use in end-of-life care. Specifically, he claims that (1) routine, non-lethal opioid and sedative administration may be “intrinsically bad” by PDE’s standards, (2) continuous deep palliative sedation (or “terminal sedation”) should be treated as a bad effect akin to death for purposes of PDE, (3) PDE cannot coherently (...) be applied in cases where death “indirectly” furthers an agent’s intended end of pain relief via medically appropriate palliative care, and (4) application of PDE requires sacrificing common beliefs about the sanctity of human life. I respond by showing that Riisfeldt’s understanding of PDE is seriously mistaken: he misattributes Kantian and Millian reasoning to the principle and conflates acts’ intrinsic properties with their effects. Further, a corrected understanding of PDE can address Riisfeldt’s case-specific objections. (shrink)

Critical care society guidelines recommend that ethics committees mediate intractable conflict over potentially inappropriate treatment, including Do Not Resuscitate status. There are, however, limited data on cases and circumstances in which ethics consultants recommend not offering cardiopulmonary resuscitation despite patient or surrogate requests and whether physicians follow these recommendations. This was a retrospective cohort of all adult patients at a large academic medical center for whom an ethics consult was requested for disagreement over DNR status. Patient demographic (...) predictors of ethics consult outcomes were analyzed. In 42 of the 116 cases, the patient or surrogate agreed to the clinician recommended DNR order following ethics consultation. In 72 of 74 of the remaining cases, ethics consultants recommended not offering CPR. Physicians went on to write a DNR order without patient/surrogate consent in 57 of those cases. There were no significant differences in age, race/ethnicity, country of origin, or functional status between patients where a DNR order was and was not placed without consent. Physicians were more likely to place a DNR order for patients believed to be imminently dying. The median time from DNR order to death was 4 days with a 90-day mortality of 88.2%. In this single-center cohort study, there was no evidence that patient demographic factors affected ethics consultants’ recommendation to withhold CPR despite patient/surrogate requests. Physicians were most likely to place a DNR order without consent for imminently dying patients. (shrink)

Regulation and clinical practices regarding end of human life care differ among the nations and countries. These differences reflect the history of the development of state health systems, different societal values, and different understandings of dignity and what it means to protect or respect dignity. The result is variation in the ethical, legal, and practical approaches to end-of-life issues. The article analyzes the diversity of strategies to strengthen dignity at the end of life of terminally ill patients and (...) to highlight the legal preconditions and limitations for implementing these strategies in independent Lithuania, as a former state of the Soviet Union. It is based on the critical analysis of philosophical literature, legal national and international documents and scientific evidence related to the issue. The author argues that the legal system in Lithuania is not sufficient to ensure the patient’s dignity at the end of life and remains far behind other Western European countries. Legal regulations in Lithuania do not guarantee the right of the patient to express his or her will regarding the future treatment, including the refusal of resuscitation, do not regulate the termination of burdensome, non-viable and meaningless treatment that is undesired by the patient, and limit the accessibility of palliative care with its necessary quality and comfort. (shrink)

Anesthesiology training programs are tasked with equipping trainees with the skills to become medically and ethically competent in the practice of anesthesia and to be prepared to obtain board certification, yet there is currently no standardized ethics curriculum within anesthesia training programs in the United States. To bridge this gap, and to provide a validated ethics curriculum to meet the aforementioned needs, in July 2021, a survey was sent to anesthesia scholars in the field of biomedical ethics to identify key (...) areas that should be included in such an ethics curriculum. The responses were rated on a Likert scale and ranked. This paper identifies the top ten topics identified as high priority for inclusion in an anesthesiology training program and consequently deemed most relevant to meet the educational needs of graduates of an anesthesiology residency: (1) capacity to consent; (2) capacity to refuse elective versus lifesaving treatment; (3) application of surrogate decisionmaking; (4) approach to do not resuscitate (DNR) status in the operating room; (5) patient autonomy and advance directives; (6) navigating patient beliefs that may impair care; (7) “futility” in end-of-life care: when to withdraw life support; (8) disclosure of medical errors; (9) clinical criteria for “brain death” and consequences of this definition; and (10) the impaired anesthesiologist. (shrink)

At the end of life, pain management is commonly a fundamental part of the treatment plan for patients where curative measures are no longer possible. However, the increased recognition of opioid diversion for secondary gain coupled with efforts to treat patients in the home environment towards the end of life creates the potential for ethical dilemmas in the palliative care management of terminal patients in need of continuous pain management. We present the case of an end-stage patient with (...) rectal cancer who required a continuous residential narcotic infusion of fentanyl for pain control due to metastatic disease. His functional status was such that he had poor oral intake and ability to perform other activities of daily living, but was able to live at home with health agency nursing care. The patient presented to this institution with a highly suspect history of having lost his fentanyl infusion in a residential accident and asking for a refill to continue home therapy. The treating physicians had concerns of diversion of the infusion medication by caregivers and were reluctant to continue the therapeutic relationship with the patient. This case exemplifies the tension that can exist between wanting to continue with palliative care management of an end-stage patient and the fear of providers when confronted by evidence of potential diversion of opioid analgesic medications. We elucidate how an ethical framework based on a combination of virtue and narrative/relationship theories with reference to proportionality can guide physicians to a pragmatic resolution of these difficult situations. (shrink)

OBJECTIVES: Life-sustaining treatment at the end of life gives rise to many ethical problems in Japan. Recent surveys of Japanese physicians suggested that they tend to treat terminally ill patients aggressively. We studied why Japanese physicians were reluctant to withhold or withdraw life-support from terminally ill patients and what affected their decisions. DESIGN AND PARTICIPANTS: A qualitative study design was employed, using a focus group interview with seven physicians, to gain an in-depth understanding of attitudes and rationales in Japan regarding (...) medical care at the end of life. RESULTS: Analysis revealed that physicians and patients' family members usually make decisions about life-sustaining treatment, while the patients' wishes are unavailable or not taken into account. Both physicians and family members tend to consider withholding or withdrawing life-sustaining treatment as abandonment or even killing. The strongest reason to start cardiopulmonary resuscitation- and to continue it until patients' family members arrive-seems to be the family members' desire to be at the bedside at the time of death. All physicians participating in our study regarded advance directives that provide information as to patients' wishes about life-sustaining treatment desirable. All expressed concern, however, that it would be difficult to forego or discontinue life-support based on a patient's advance directive, particularly when the patient's family opposed the directive. CONCLUSION: Our group interview suggested several possible barriers to death with dignity and the appropriate use of advance directives in Japan. Further qualitative and quantitative research in this regard is needed. (shrink)

Parents have the autonomous right to choose or refuse a treatment for their child, even those that are life sustaining, if it is extraordinary or disproportionate and it is within the best interest and well-being of their child. Pediatric health care is practiced with the goal of promoting the best interests of the child to do so. Treatment is generally rendered under a presumption in favor of sustaining life. However, in some circumstances, the balance of benefits and burdens (...) to the child leads to an assessment that forgoing life-sustaining medical treatment (LSMT) is ethically supportable or advisable. Input from specialists in palliative care, ethics, pastoral care, and other disciplines enhances support for families and medical staff when decisions to forgo LSMT are being considered. (shrink)

Background and objective: Code status discussions may fail to address patients’ treatment-related goals and their knowledge of cardiopulmonary resuscitation (CPR). This study aimed to investigate patients’ resuscitation preferences, knowledge of CPR and goals of care. Design, setting, patients and measurements: 135 adults were interviewed within 48 h of admission to a general medical service in an academic medical centre, querying code status preferences, knowledge about CPR and its outcome probabilities and goals of care. (...) Medical records were reviewed for clinical information and code status documentation. Results: 41 (30.4%) patients had discussed CPR with their doctor, 116 (85.9%) patients preferred full code status and 11 (8.1%) patients expressed code status preferences different from the code status documented in their medical record. When queried about seven possible goals of care, patients affirmed an average of 4.9 goals; their single most important goals were broadly distributed, ranging from being cured (n = 36; 26.7%) to being comfortable (n = 8; 5.9%). Patients’ mean estimate of survival to discharge after CPR was 60.4%. Most patients believed it was helpful to discuss goals of care (n = 95; 70.4%) and the chances of surviving inhospital CPR (n = 112; 83.0%). Some patients expressed a desire to change their code status after receiving information about survival following inhospital CPR (n = 11; 8.1%) or after discussing goals of care (n = 2; 1.5%). Conclusions: Doctors need to address patients’ knowledge about CPR and take steps to avoid discrepancies between treatment orders and patients’ preferences. Addressing CPR outcome probabilities and goals of care during code status discussions may improve patients’ knowledge and influence their preferences. (shrink)

Background In 2021, Spain became the first Southern European country to grant and provide the right to euthanasia and medically assisted suicide. According to the law, the State has the obligation to ensure its access through the health services, which means that healthcare professionals’ participation is crucial. Nevertheless, its implementation has been uneven. Our research focuses on understanding possible ethical conflicts that shape different positions towards the practice of Medical Assistance in Dying, on identifying which core ideas may (...) be underlying them, and on suggesting possible reasons for this disparity. The knowledge acquired contributes to understanding its complexity, shedding light into ambivalent profiles and creating strategies to increase their participation. Methods We conducted an exploratory qualitative research study by means of semi-structured interviews (1 h) with 25 physicians and nurses from primary care (12), hospital care (7), and palliative care (6), 17 women and 8 men, recruited from Madrid, Catalonia, and Andalusia between March and May 2023. Interviews were recorded, transcribed, and coded in Atlas.ti software by means of thematic and interpretative methods to develop a conceptual model. Results We identified four approaches to MAiD: Full Support (FS), Conditioned Support (CS), Conditioned Rejection (CR), and Full Rejection (FR). Full Support and Full Rejection fitted the traditional for and against positions on MAiD. Nevertheless, there was a gray area in between represented by conditioned profiles, whose participation cannot be predicted beforehand. The profiles were differentiated considering their different interpretations of four core ideas: end-of-life care, religion, professional duty/deontology, and patient autonomy. These ideas can intersect, which means that participants' positions are multicausal and complex. Divergences between profiles can be explained by different sources of moral authority used in their moral reasoning and their individualistic or relational approach to autonomy. Conclusions There is ultimately no agreement but rather a coexistence of plural moral perspectives regarding MAiD among healthcare professionals. Comprehending which cases are especially difficult to evaluate or which aspects of the law are not easy to interpret will help in developing new strategies, clarifying the legal framework, or guiding moral reasoning and education with the aim of reducing unpredictable non-participations in MAID. (shrink)

The quality of end-of-life care in this country is often poor. There is abundant literature indicating that dying individuals do not receive adequate pain medication or palliative care, are tethered to machines and tubes in a way that challenges their dignity and autonomy, and are not helped to deal with the emotional grief and psychological angst that may accompany the dying process. While this is true for individuals in many settings, it seems to be especially true for (...) individuals in nursing homes. This is somewhat puzzling given that considerable resources have been devoted to bringing public attention to this problem, we have the knowledge and expertise to provide such care, and we have a government-financed benefit that covers this type of care - the Medicare hospice benefit.While utilization of hospice care has increased during the last decade, there is considerable evidence that hospice care remains underutilized particularly in the long term care setting. (shrink)

This paper clarifies some of the longstanding difficulties in negotiating Do Not Resuscitate Orders by reframing the source of the dilemmas as not residing with either the patient or the physician but with their relationship. The recommendations are low cost and low-tech ways of making major improvements to the care and quality of life of the most ill patients in hospital. With impending physician-assisted death legislation there is an urgency to find more efficient and beneficial ways for clinicians and (...) patients to address resuscitation issues at the bedside. Paradigmatic shifts in the nature of the patient-physician relationship will need to be encouraged by the larger community. These encouraged shifts address the concepts of passive/inferior patient – active/superior physician, patient ownership of and access to all their health care information, and treating the patient as a major participant in the delivery of health care. These recommended changes will not in themselves make any patient, physician or other healthcare provider more humane and open in the patient’s final days. The goal, instead, is to have changes to the context of the discussion provide an encouraging environment for more open communication and a balanced relationship among participants with the patient being the most important. (shrink)