Background Thirst and dry mouth are common symptoms in terminally ill patients. In their day-to-day practice, palliative care physicians regularly encounter ethical dilemmas, especially regarding artificial hydration. Few studies have focused on thirst and the ethical dilemmas palliative care physicians encounter in relation to this, leading to a knowledge gap in this area. Aim The aim of this study was to explore palliative care physicians’ experiences of ethical challenges in relation to thirst in terminally (...) ill patients. Methods A qualitative interview study with an inductive approach was conducted. Sixteen physicians working in four different specialised palliative care units and one geriatric care unit in different hospitals in Sweden were interviewed. The interviews were transcribed verbatim and analysed with a reflexive thematic analysis. Results When presented with an ethical challenge relating to thirst, physicians attempted to balance benefits and harms while emphasizing respect for the patient’s autonomy. The ethical challenges in this study were: Starting, continuing or discontinuing drips; lack of evidence and traditions create doubt; and lack of interest and time may result in patient suffering. Conclusions All physicians in this study reported that “Starting, continuing or discontinuing drips” was the main ethical challenge they encountered, where some were so accustomed to the decision that they had a standard answer ready to offer patients and families. Physicians reported that drips were a symbol of thirst quenching, life and survival but were not necessary in end-of-life care. Others questioned the traditions regarding thirst and emphasised drips in particular. (shrink)

In a recent article, 1 Riisfeldt attempts to show that the principle of double effect 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 routine, non-lethal opioid and sedative administration may be “intrinsically bad” by PDE’s standards, continuous deep palliative sedation should be treated as a bad effect akin to death for purposes of PDE, 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 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)

In 2001, leaders with palliative care convened to discuss the standardization of palliative care and formed the National Consensus Project for Quality Palliative Care. In 2004, the National Consensus Project for Quality Palliative Care produced the first edition of Clinical Guidelines for Quality Palliative Care. The Guidelines were developed by leaders in the field who examined other national and international standards with the intent to promote consistent, accessible, comprehensive, optimal (...) class='Hi'>palliative care through the health care spectrum. Within the guidelines there are eight domains to the provision of palliative care. This article focuses on the last, but very significant Domain 8—Ethical and Legal Aspects of Care. (shrink)

Pediatric palliative care is specialized medical care for children who live with serious and life-limiting illnesses, with the central goal to improve quality of life for both children and their families. Presently, a majority of pediatric palliative care referrals are based on the traditional consultative model, in which primary providers serve as the gatekeepers to palliative care access. It is well-known that racial and ethnic healthcare disparities exist across the continuum of care, (...) fraught with healthcare providers’ biases that impact the care delivered. This includes the referral practices, allocation and utilization of palliative care services, and leaving vulnerable children and families with potentially unmet palliative care needs. We make the moral argument that the establishment of standard referral criteria for pediatric palliative care services is one simple step that must be taken to begin to address and hopefully ameliorate the impact of providers’ biases and disparities that exist within pediatric palliative care. (shrink)

In Sweden, efforts to govern end-of-life care through policies have been ongoing since the 1970s. The aim of this study is to analyse how policy narratives on palliative care in Sweden have been formulated and have changed over time since the 1970s up to 2018. We have analysed 65 different policy-documents. After having analysed the empirical material, three policy episodes were identified. In Episode 1, focus was on the need for norms, standards and a psychological end-of-life (...) class='Hi'>care with the main goal of solving the alleged deficiencies within end-of-life care in hospital settings. Episode 2 was characterised by an emphasis on prioritising end-of-life care and dying at home, and on the fact that the hospice care philosophy should serve as inspiration. In Episode 3, the need for a palliative care philosophy that transcended all palliative care and the importance of systematic follow-ups and indicators was endorsed. Furthermore, human value and freedom of choice were emphasised. In conclusion, the increase of policy-documents produced by the welfare-state illustrate that death and dying have become matters of public concern and responsibility. Furthermore, significant shifts in policy narratives display how notions of good palliative care change, which in turn may affect both the practice and the content of care at the end of life. (shrink)

The concepts of hope and its absence, hopelessness, are seen as crucial in palliative care for people with motor neurone disease. A primary measure in psychological research on hopelessness in people with motor neurone disease is the Beck Hopelessness Scale. This scale can be understood as being conceptually based on the philosophical standard account of hope, which understands hope as an intentional expectancy. This essay argues that this is a misconstruction of hopelessness in palliative care. (...) Rather, pre-intentional hope is essential for palliative care of people with motor neurone disease. Pre-intentional hope enables the formation of intentional hopes and is intrinsically relational. Finally, it is argued that the absence of pre-intentional hope should not be subjected to psychiatric diagnosis, for example, in the form of demoralization disorder. (shrink)

Background:Palliative carers constantly face ethical problems. There is lack of organised support for the carers to handle these ethical problems in a consistent way. Within organisational ethics, we find models for moral deliberation and for developing organisational culture; however, they are not combined in a structured way to support carers’ everyday work.Research objective:The aim of this study was to describe ethical problems faced by palliative carers and develop an adapted organisational set of values to support the handling of (...) these problems.Research design:Ethical problems were mapped out using focus groups and content analysis. The organisational culture were developed using normative analysis and focus group methodology within a participatory action research approach.Main participants and research context:A total of 15 registered nurses and 10 assistant nurses at a palliative unit at a major University Hospital in Sweden.Ethical considerations:The study followed standard ethics guidelines concerning informed consent and confidentiality.Findings:We found six categories of ethical problems and five categories of organisational obstacles. Based on these findings, we developed a set of values in three levels: a general level, an explanatory level and a level of action strategies.Discussion:The ethical problems found corresponded to problems in other studies with a notable exception, the large focus on patient loved ones. The three-level set of values is a way to handle risks of formulating abstract values not providing guidance in concrete care voiced in other studies.Conclusion:Developing a three-level set of values adapted to the specific ethical problems in a concrete care setting is a first step towards a better handling of ethical problems. (shrink)

Health professionals are especially exposed to stress, with consequences on professionals’ health and wellbeing. However, palliative care professionals’ wellbeing has been the subject of very little research. The aim of this work is to study the Personal Wellbeing Index in a sample of Spanish palliative care professionals, as well as to study their levels of wellbeing and the relationships of wellbeing with variables such as gender, age, marital status, profession, and professional quality of life. A cross-sectional (...) survey of Spanish palliative care professionals was conducted. The Spanish version of the PWI and the Short version of the Professional Quality of Life Scale were used. Here, 296 palliative care professionals attending patients at the end of life participated in the study. They showed medium to high levels of wellbeing. The PWI showed an adequate internal structure [χ2 = 116.130 ]; Comparative Fit Index = 0.970; standardized root mean square residual = 0.041; root mean square error of approximation = 0.140 ] and excellent estimates of reliability [α = 0.879 and Composite Reliability Index = 0.923]. Wellbeing was higher for married compared to single and showed no relation with age, gender, and profession. Additionally, a structural equation model was estimated, in which a positive relation was found between wellbeing and compassion satisfaction and a negative one with burnout. The PWI is adequate to measure personal wellbeing in Spanish palliative care professionals. (shrink)

Stakeholder consultation is part of the democratic process, embraces respect for persons, and is necessary for upholding the principle of justice. People are more likely to uphold standards they have participated in setting, so stakeholder consultation encourages adherence to societal and institutional standards as these evolve. Stakeholder consultation is also responsive to the call to “resocialize” ethics by contextualizing dilemmas and involving the destitute in choices about their healthcare. In resource-poor settings, such consultation promotes local “ownership” of, and leadership within, (...) development programs, which enhances effectiveness and sustainability. Stakeholder consultation is, therefore, a form of capacity building. To succeed, it must be responsive to regional, national, and individual constraints, including socioeconomic, cultural, and political ones. Several such constraints impact on the demand for, and availability of, palliative healthcare in the Caribbean. (shrink)

The ArgumentPatients suffering from advanced, incurable cancer often receive from their doctors proposals to enroll in a clinical trial of an experimental therapy. Experimental therapies are increasingly perceived not as a highly problematic approach but as a near-standard way to deal with incurable cancer. There are, however, important differences in the diffusion of these therapies in Western countries. The large diffusion of experimental therapies for malignant disease in the United States contrasts with the much more restricted diffusion of these (...) therapies in the United Kingdom. The difference between the two reflects differences in the organization of health care in these countries and distinct patterns of the professionalization of medical oncology in America and in Britain. The high density and great autonomy of medical oncologists in the United States encourages there the diffusion of experimental therapies (regarded by some as expensive and inefficient); the lower density of these specialists in the United Kingdom and their task as consultants and not primary caregivers, favors the choice of more conservative (for some, too conservative) treatments. Theoretically, the decision as to whether patients suffering from advanced, incurable cancer will be steered toward an experimental therapy or toward palliative care depends on the values and beliefs of these patients and their physicians. In practice, however, such choice does not depend exclusively on the individual' cultural background and ethical values, but is also strongly affected by the — culturally conditioned — Professional and institutional structure of medicine. (shrink)

Palliative care and euthanasia have become the subject of ethical and political debate in Poland. However, the voice of nurses is rarely heard. The aim of this study is to explore the perception of palliative care and euthanasia among recent university bachelor degree graduates and experienced nurses in Poland. Specific objectives include: self-assessment of the understanding of these terms, recognition of clinical cases, potential acceptability of euthanasia, and an evaluation of attitudes towards palliative care (...) and euthanasia. This is an exploratory study. A convenience sample of 206 recent graduates and 252 experienced nurse practitioners were interviewed. A structured questionnaire was used for collecting and interpreting data. Subjective perception of the terms `palliative care' and `euthanasia' was high and consistent with the recognition of clinical cases. The majority of the nurses excluded euthanasia from palliative care. They recognized personal philosophy of life as the most influential factor affecting attitudes towards euthanasia. The importance of the law was valued more highly by the experienced nurses. (shrink)

Background Recently, palliative care is increasingly important, with an emphasis on the process of dying with dignity. However, nurses who care for such patients experience the associated ethical dilemmas. Objective To explore the meaning of nurses’ experiences in dealing with ethical dilemmas in relation to palliative sedation. Research design A qualitative research design was employed with a thematic analysis approach. Participants and research context Using purposive sampling, 15 nurses, working at palliative care units for (...) at least 1 year, were recruited as participants. Data were collected using unstructured in-depth interviews, and data collection and analysis was performed simultaneously. Ethical considerations Ethical approval was obtained from the authors’ institutional review board. All participants provided informed consent. For the face-to-face interview, the South Korean standard COVID-19 quarantine guidelines, such as mandatory masking and social distancing, were followed. Results Dilemmas raised by patients, were related to concerns about appropriate drug dose; dilemmas raised by nurses, were related to passive care, sense of guilt for failure to predict death, and colleague’s disrespectful attitudes toward patients; dilemmas from patients’ families were related to demands for palliative sedation and reversal of those demands. Care actions to deal with ethical dilemmas comprised evidence-based care, person-centered thinking, reflecting on the death situation, compassion, providing explanation and help to family members. Conclusion Nurses’ ethical dilemmas were pre-dominantly influenced by themselves, rather than by the patients or their families, especially if they felt they could not do their best for patients. The core concept of care actions to deal with the ethical dilemmas, was person-centered care and compassion. Then, how patients and their family members perceive person-centered care and compassion, should be further explored to improve palliative sedation. (shrink)

Patients in need of palliative care are often described as vulnerable. Being vulnerable can sometimes be interpreted as the opposite of being autonomous, if an autonomous person is seen as an independent, self-sufficient person who forms decisions independently of others. Such a dichotomous view can create a situation where one has experiences of vulnerability that cannot be reconciled with the central ethical principle of autonomy. The article presents a feminist ethical perspective on the conceptualisation of vulnerability in the (...) context of palliative care. It does so through the lens of the concepts of inherent and pathogenic vulnerability from the taxonomy on vulnerability suggested by Mackenzie et al. To differentiate between forms of vulnerability, is important since even though vulnerability can be regarded as a shared life condition it can be the product of practices creating harm to the patient. The article also presents an analysis of how vulnerability can be included in the interpretation of the ethical principle of autonomy, in order to be relevant in palliative care where vulnerability is salient, namely, as relational autonomy. Furthermore, two practical implications for nursing practice are suggested. Firstly, to acknowledge vulnerability as a shared life condition one needs training in order to neither be overwhelmed by one’s own vulnerability, nor become invulnerable when facing vulnerability in others. Secondly, to foster relational autonomy includes navigating between the patient exercising their autonomy within a framework of relations, and shielding the patient from paternalistic practices. Nurses could be particularly suited for this role, which includes creating an environment which is open and supportive; navigating between patient, family and staff; seeing and acknowledging the complex situation in which patient autonomy is actually played out; and promoting patient autonomy. (shrink)

It is a philosophy of patient care, and is therefore open to critique and evaluation.Using the Oxford Textbook of Palliative Medicine Third Edition as their ...

With an estimated 12.1% of children aged 2–5 years already obese, prevention efforts must target our youngest children. One of the best places to reach young children for such efforts is the early care and education setting. More than 11 million U.S. children spend an average of 30 hours per week in ECE facilities. Increased attention at the national, state, and community level on the ECE setting for early obesity prevention efforts has sparked a range of innovative efforts. To (...) assist these efforts, CDC developed a technical assistance and training framework – the Spectrum of Opportunities for Obesity Prevention in the ECE setting – which also served as the organizing framework for the Weight of the Nation ECE track. Participants highlighted their efforts at national, state, and local levels pursuing opportunities on the Spectrum, the standards and best practices that had been the emphasis of their efforts, and common steps for developing, implementing, and evaluating initiatives. Strong leadership and collaboration among a broad group of stakeholders; systematic assessment of needs, opportunities and resources; funding sources; and training and professional development were reported to be integral for successful implementation of standards and best practices, and sustainability. (shrink)

Appropriate and balanced decision-making is sentinel to goal setting and the provision of appropriate clinical care that are attuned to preserving the best interests of the patient. Current family-led decision-making in family-centric societies such as those in Singapore and other countries in East Asia are believed to compromise these objectives in favor of protecting familial interests. Redressing these skewed clinical practices employing autonomy-based patient-centric approaches however have been found wanting in their failure to contend with wider sociocultural considerations that (...) impact care determinations. Evaluation of a number of alternative decision-making frameworks set out to address the shortcomings of prevailing atomistic and family-centric decision-making models within the confines of end-of-life care prove these alternative frameworks to be little better at protecting the best interests of vulnerable patients. As a result, we propose the Welfare Model that we believe is attentive to the relevant socio-culturally significant considerations of a particular case and better meets the needs of end-of-life care goals of preserving the welfare of patients. Employing a multi-professional team evaluation guided by regnant psychosocial, legal, and clinical standards and the prevailing practical and clinical realities of the particular patient’s setting the Welfare Model provides a clinically relevant, culturally sensitive, transparent, and evidence-based approach to care determinations. (shrink)

Palliative care seeks to improve the quality of life for patients suffering from the impact of life‐limiting illnesses. Palliative care encompasses but is more than end‐of‐life care, which is defined as care during the final hours/days/weeks of life. Although palliative care policies increasingly require all healthcare professionals to have at least basic or non‐specialist skills in palliative care, international evidence suggests there are difficulties in realising such policies. This study reports (...) on an action research project aimed at developing respiratory nursing practice to address the palliative care needs of patients with advanced chronic obstructive pulmonary disease (COPD). The findings suggest that interlevel dynamics at individual, team, interdepartmental and organisational levels are an important factor in the capacity of respiratory nurses to embed non‐specialist palliative care in their practice. At best, current efforts to embed palliative care in everyday practice may improve end‐of‐life care in the final hours/days/weeks of life. However, embedding palliative care in everyday practice requires a more fundamental shift in the organisation of care. (shrink)

As palliative care develops across many of the countries of Europe, we find that it continues to raise important ethical challenges. Palliative care practice requires ethical sensitivity and understanding. At the same time the very existence of palliative care calls for ethical explanation. Ethics and palliative care meet over some vital issues: 'the good death', sedation at the end of life, requests for euthanasia, futile treatment, and the role of research. Yet (...) class='Hi'>palliative care appears uncertain about its goals and there is evidence that its ethical underpinnings are changing. Likewise, the moral problems of palliative care are only partly served by the four 'principles' of modern bioethics. This innovative book, with contributions by clinicians, ethicists, philosophers and social scientists, provides the first ever picture of palliative care ethics in the European context. It will be of interest to those involved in the delivery and management of palliative care services, as well as to students and researchers. (shrink)

Spiritual care is a profession in transformation. It is evolving from a denominationally bound profession into a specific kind of healthcare profession. In the Netherlands, as elsewhere, debates are going on about the introduction of standards in public services such as health care. Many spiritual counsellors oppose standardization of spiritual care. Most importantly, standards seem to conflict with their sanctuary position as well as with the ?theory of presence? that many spiritual counsellors adhere to. A questionnaire was (...) distributed among spiritual counsellors asking them about the nature and number of standards they work with and the positive and negative effects of these standards on their daily work. This exploratory study shows that only a few spiritual counsellors work with standards. It also reveals that those who work with standards are neutral to positive about the ways in which standards influence their work. In particular, spiritual counsellors working with standards state that doing so does not conflict with their sanctuary position, nor with their ?being present?. The responses suggest that it does not seem to be standards as such but rather the social setting within which the standards are used that determines the effects that standards have on the content and quality of spiritual care. The paper concludes with some recommendations and suggestions for further investigation. (shrink)

A welcome addition to the “Facing Death Series” makes an important contribution to palliative care ethics. The contributors, from seven European countries, debate the tension created between viewing ethics as a way of giving answers to end of life issues and the practice and philosophy of palliative care contributing to the development of medical ethics—that is, ethics “in” and “of” palliative care.Philosophical discussion requires an historical perspective; the early part of the book addresses this (...) by describing the work of the “Pallium” project. This European collaboration of ethicists, clinicians, philosophers, and social scientists, explored and analysed conceptual and ethical and ethical issues in palliative care.The study describes the differing way in which palliative care …. (shrink)

This book on the history of palliative care, 1500-1970 traces the historical roots of modern palliative care in Europe to the rise of the hospice movement in the 1960s. The author discusses largely forgotten premodern concepts like cura palliativa and euthanasia medica and describes, how patients and physicians experienced and dealt with terminal illness. He traces the origins of hospitals for incurable and dying patients and follows the long history of ethical debates on issues like truth-telling (...) and the intentional shortening of the dying patients’ lives and the controversies they sparked between physicians and patients. An eye opener for anyone interested in the history of ethical decision making regarding terminal care of critically ill patients. (shrink)

The notion of home is well known from our everyday experience, and plays a crucial role in all kinds of narratives about human life, but is hardly ever systematically dealt with in the philosophy of medicine and health care. This paper is based upon the intuitively positive connotation of the term “home.” By metaphorically describing the goal of palliative care as “the patient’s coming home,” it wants to contribute to a medical humanities approach of medicine. It is (...) argued that this metaphor can enrich our understanding of the goals of palliative care and its proper objectives. Four interpretations of “home” and “coming home” are explored: (1) one’s own house or homelike environment, (2) one’s own body, (3) the psychosocial environment, and (4) the spiritual dimension, in particular, the origin of human existence. Thinking in terms of coming home implies a normative point of view. It represents central human values and refers not only to the medical-technical and care aspects of health care, but also to the moral context. (shrink)

BackgroundLittle previous research has been conducted outside of major cities in China to examine how physicians currently perceive palliative care, and to identify specific goals for training as palliative care access expands. This study explored physicians’ perceptions of palliative care integration for advanced cancer patients in Changsha, China.MethodsWe conducted semi-structured qualitative interviews with physicians (n = 24) specializing in hematology or oncology at a tertiary hospital.ResultsMost physicians viewed palliative care as equivalent to (...) end-of-life care, while a minority considered it possible to integrate palliative care with active treatment. Almost all physicians maintained separate conversations about palliative care with family members and patients, communicating more directly with family members than with patients about prognosis and goals of care. Physicians described experiencing ethical tension between the desire of family members to protect the patient from knowing they have advanced cancer, and the patient’s “right to decide” about palliative treatment. Physicians varied overall regarding perceptions of the role they should have in discussions about goals of care.ConclusionsAs palliative care access expands in China, medical training should encourage earlier integration of palliative care for advanced cancer, address ethical issues faced by physicians communicating about palliative care, and establish guidance on the role of the physician in discussions about goals of care. (shrink)

It is clear that in the eyes of a growing number of humanitarian fieldworkers and decision-makers, palliative care is something humanitarian organizations should strive to provide as they address the needs of populations affected by crises. What remains less clear are the moral justifications underlying the push to do so. This chapter dives beneath surface prescriptions of what “ought to be” the place of palliative care within humanitarian response. It presents and analyses a series of evocative (...) statements made by 24 humanitarian healthcare actors about why, on what bases, and with what caveats, care for the dying deserves more attention within humanitarian healthcare response. Embedded in these statements are sometimes explicit, sometimes implicit ideas about what it means be a human and a humanitarian, and what humans need and deserve. Clarifying the experiences, practical considerations, understandings of care and responsibility, and norms and values underlying these feelings renders these available for more thorough reflection, discussion, and debate. (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)

Educating young people about how to interact with patients at the end of their lives is challenging. A qualitative study based on Husserl’s phenomenological approach was performed to describe the learning experience of secondary education students after watching, analysing, and reflecting on two videoclips featuring Cameron Duncan, a young man suffering from terminal cancer. Students from three vocational centres providing training in ancillary nursing, pharmacy, and dependent care in the Community of Madrid visited the Palliative Care Hospital. (...) A total of 110 students, with a median age of nineteen years, participated in the study. The students’ learning experience through the videoclips reveals the essential aspects required in palliative care, since the character suffers in every dimension of his being: physically as well as psychologically, socially, and spiritually. Therefore, this requires healthcare professionals to understand their experience, putting themselves in their place, to provide affectionate care and to display communication skills leading to a quality helping relationship. Four comprehensive educational categories were identified in the study. The students learned the importance of: 1) providing comprehensive and affectionate care to patients, 2) the need for communication skills in caring for patients, 3) being aware of the end of life and time left, 4) valuing life and fighting for what one wishes to attain. A visit to a PC hospital and the viewing of videoclips and reflection upon these, represents a useful strategy for secondary education healthcare students. The study indicates that videoclips are an innovative method for becoming aware of the various issues pertaining to palliative care. (shrink)

This article is based on the findings of a study that elicited the views of terminally ill patients, their carers and bereaved carers on the palliative care services they received. It explores the range of ethical issues revealed by the data. Although the focus of the original study was on community services, the participants frequently commented on all aspects of their experience. They described some of its positive and negative aspects. Of concern was the reported lack of sensitivity (...) to the role of the family among health professionals. The family, as carers, service users and advocates, represent a challenge to professional boundaries and the ethical norms of confidentiality and best interest. The accounts reveal the complexity of the ethical issues that characterize terminal care, issuing specific ethical challenges to nurses and other health professionals involved in this field. (shrink)

The 2006 term of the United States Supreme Court is now well underway, and the results of the congressional mid-term elections are in. No doubt, decisions will be handed down and national legislation proposed – perhaps even enacted – that will directly or indirectly affect the physician-patient relationship as well as the profession of medicine itself. Of major concern to physicians, patients, and the lay public is the ongoing, rather contentious debate surrounding both patient access to adequate pain control and (...) what constitutes proper physician conduct in treating patients who are experiencing either chronic or end stage disease pain. Those knowledgeable in palliative medicine maintain that an “epidemic of undertreated pain” now exists, and probably has existed for more than a decade. A significant number of patients experience unnecessary pain and suffering, and this disturbing phenomenon is both an individual patient care problem and a public health concern. (shrink)

That a standard of medical care must outline services that benefit the patient is relatively uncontroversial. However, one must determine how the practices outlined in a medical standard of care should benefit the patient. I will argue that practices outlined in a standard of medical care must not detract from the patient’s well-functioning and that clinicians can refuse to provide services that do. This paper, therefore, will advance the following two claims: (1) a (...) class='Hi'>standard of medical care must not cause dysfunction, and (2) if a physician is medically rational to not provide some service which fails to meet the above condition (i.e. fails to be a standard of medical care), then she may refuse to do so. I then apply my thesis to the prescription of puberty blockers to children with gender dysphoria. (shrink)

The U.S.Supreme Court's 6-decision in Gonzales v. Oregon is the latest defeat for the Bush administration in its sustained attack on Oregon's physician-assisted suicide law. Both the majority opinion and the major dissent in Oregon provide an opportunity to assess the dangers inherent in allowing a political agenda that emphasizes the sanctity of life and minimizes professional ethical obligations to overshadow quality patient care at the end of life.

ObjectivesIn 2015, the Province of Quebec, Canada passed a law that allowed voluntary active euthanasia. Palliative care stakeholders in Canada have been largely opposed to euthanasia, yet there is little research about their views. The research question guiding this study was the following: How do palliative care physicians in Quebec position themselves regarding the practice of VAE in the context of the new provincial legislation?MethodsWe used interpretive description, an inductive methodology to answer research questions about clinical (...) practice. A total of 18 palliative care physicians participated in semistructured interviews at two university-affiliated hospitals in Quebec.ResultsParticipants positioned themselves in opposition to euthanasia. Their justifications were framed within their professional commitment to not hasten death, which sat in tension with the value of patients’ autonomy to choose how to die. Participants described VAE as unacceptable if it impeded opportunities to evaluate and alleviate suffering. Further, they contested government rhetoric that positioned VAE as a way to improve end-of-life care. Participants felt that VAE would diminish the potential of palliative care to relieve suffering. Dilemmas were apparent in their narratives, about reconciling respect for patient autonomy with broader palliative care values, and the value of accompanying and not abandoning patients who make requests for VAE while being committed to neither prolonging nor hastening death.ConclusionsThis study provides insight into nuanced positions of experienced palliative care physicians in Quebec and confirms expected tensions between an important stakeholder and the practice of VAE as guided by the new legislation. (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)