The task of aligning the philosophical and clinical perspectives on ethics is a challenging one. Clinical practice informs philosophy, not merely by supplying cases, but through shaping and testing philosophical concepts in the reality of the clinical world. In this paper we explore several aspects of the relationship between the philosophical and the clinical within a framework of palliative care for people living with Alzheimer's disease. We suggest that health professionals have a moral obligation to question previous assumptions concerning the (...) quality of life among people with Alzheimer's, and to address the question: does the concept of palliative care properly embrace people with severe dementia? We propose an ethic of palliative care for people with Alzheimer's that is based, not on the traditionally understood principle of autonomy, but on the need to listen to those living with the disease, acknowledging their profound loss of cognitive abilities, with a focus on preventing and relieving suffering, and improving the individual's quality of life. (shrink)

Good medical practice requires evidence of effectiveness to address deficits in care, strive for further improvements, and justly apportion finite resources. Nevertheless, the potential of palliative care is still held back by a paucity of good evidence. These circumstances are largely attributable to perceived ethical challenges that allegedly distinguish dying patients as a special client class. In addition, practical limitations compromise the quality of evidence that can be obtained from empirical research on terminally ill subjects.This critique aims to appraise the (...) need for focused research, in order to develop clinical and policy decisions that will guide health care professionals in their care of dying patients. Weighted against this need are tenets that value the practical and ethical challenges of palliative care research as unique and insurmountable. The review concludes that, provided investigators compassionately apply ethical principles to their work, there is no justification for not endeavouring to improve the quality of palliative care through research. (shrink)

Two of the most important concepts in medicine are “curing” and “caring”. Patients should enter clinical trials with the understanding that they benefit from the treatment or that there may be some benefit to others. In many cancer trials, for example, the best that can be hoped for is a prolongation of life. Whether or not life is prolonged, we argue that there exists an obligation which can be termed a “bond of responsibility” to provide appropriate palliative care within the (...) patient’s own cultural context.The Declaration of Helsinki,1 the principal code governing the conduct of medical research, shows this “bond of responsibility” to be at its core. A number of statements stand out: “the health of my patient will be my first consideration”2 and “a physician shall only act in a patient’s best interest when providing medical care which might have the effect of weakening the physical and mental …. (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)

The main premise of the Royal Dutch Medical Association's (RDMA) guideline on palliative sedation is that palliative sedation, contrary to euthanasia, is normal medical practice. Although we do not deny the ethical distinctions between euthanasia and palliative sedation, we will critically analyse the guideline's argumentation strategy with which euthanasia is demarcated from palliative sedation. First, we will analyse the guideline's main premise, which entails that palliative sedation is normal medical treatment. After this, we will critically discuss three crucial propositions of (...) the guideline that are used to support this premise: (1) the patient's life expectancy should not exceed 2 weeks; (2) the aim of the physician should be to relieve suffering and (3) expert consultation is optional. We will conclude that, if inherent problematic aspects of palliative sedation are taken seriously, palliative sedation is less normal than it is now depicted in the guideline. (shrink)

Introduction: Vulnerability is a poorly understood concept in research ethics, often aligned to autonomy and consent. A recent addition to the literature represents a taxonomy of vulnerability developed by Kipnis, but this refers to the conduct of clinical trials rather than qualitative research, which may raise different issues. Aim: To examine issues of vulnerability in cancer and palliative care research obtained through qualitative interviews. Method: Secondary analysis of qualitative data from 26 black Caribbean and 19 white British patients with advanced (...) cancer. Results: Four domains of vulnerability derived from Kipnis’s taxonomy were identified and included: (i) communicative vulnerability, represented by participants impaired in their ability to communicate because of distressing symptoms; (ii) institutional vulnerability, which referred to participants who existed under the authority of others—for example, in hospital; (iii) deferential vulnerability, which included participants who were subject to the informal authority or the independent interests of others; (iv) medical vulnerability, which referred to participants with distressing medical conditions; and (v) social vulnerability, which included participants considered to belong to an undervalued social group. Participants from both ethnic groups populated all these domains, but those who were black Caribbean were more present among the socially vulnerable. Conclusions: Current classifications of vulnerability require reinterpretation when applied to qualitative research at the end of life. We recommend that researchers and research ethics committees reconceptualise vulnerability using the domains identified in this study and consider the research context and interviewers’ skills. (shrink)

The concept of ‘geneticization’ has been introduced in the scholarly literature to describe the various interlocking and imperceptible mechanisms of interaction between medicine, genetics, society and culture. It is argued that Western culture currently is deeply involved in a process of geneticization. This process implies a redefinition of individuals in terms of DNA codes, a new language to describe and interpret human life and behavior in a genomic vocabulary of codes, blueprints, traits, dispositions, genetic mapping, and a gentechnological approach to (...) disease, health and the body. This article analyses the thesis of ‘geneticization’. Explaining the implications of the thesis, and discussing the critical refutations, it is argued that ‘geneticization’ primarily is a heuristic tool that can help to re-focus the moral debate on the implications of new genetic knowledge towards interpersonal relations, the power of medicine, the cultural context and social constraints, rather than emphasizing issues as personal autonomy and individual rights. (shrink)

In May 2019, an international conference on perinatal palliative care entitled “Yes to Life! Taking Care of the Precious Gift of Life in Its Frailty” was held in Rome. It was organized by the Italian nonprofit foundation Il Cuore in Una Goccia and the Vatican’s Dicastery for Laity, Family and Life. Pope Francis greeted the participants personally and delivered an address describing the goals and practices of perinatal palliative care as being in keeping with the teachings of the Roman Catholic (...) Church and the pastoral care of families. His endorsement represents a new pastoral development, a renewed focus on supporting families and infants who are affected by genetic... (shrink)

This paper explores ethical issues relating to the management of patients who are terminally ill and unable to maintain their own nutrition and hydration. A policy of sedation without hydration or nutrition is used in palliative medicine under certain circumstances. The author argues that this policy is dangerous, medically, ethically and legally, and can be disturbing for relatives. The role of the family in management is discussed. This issue requires wide debate by the public and the profession.

Clarifying and analysing moral problems arising in the practice of palliative care was the objective of participatory observations in five palliative care settings. The results of these observations will be described in this contribution. The moral problems palliative caregivers have to deal with in their daily routines will be explained by comparison with the findings of a previously performed literature study. The specific differences in the manifestation of moral problems in the different palliative care settings will be highlighted as well.

The vast majority of contributions to the literature on spirituality in nursing make extravagant claims about transcendence, eternity, the numinous, higher powers, higher levels of existence, invisible forces, cosmic unity, the essence of humanity, or other supernatural concepts. Typically, these assertions are made without the support of argument or evidence; and, as a consequence, alternative ways of theorizing ‘spirituality’ have been closed off, while the lack of consistent scholarship has turned the topic into a metaphysical backwater. In this paper, I (...) adopt a different premise, rejecting unsupported claims, and surveying the ‘spirituality’ terrain from a naturalistic and reductionist perspective. I argue that, if we rid ourselves of non‐naturalistic assumptions, we will discover theoretical and clinical resources in health psychology, social psychology, neuropsychology, and pharmacopsychology – resources which confirm that it is possible to conceptualize the study of existential concerns, and how health professionals might respond to them, in a properly scientific manner. In order to illustrate the potential usefulness of these resources, I will take palliative care as an example. (shrink)

Burnout is a phenomenon characterized by fatigue and frustration, usually related to work stress and dedication to a cause, a way of life that does not match the person’s expectations. Although it seems to be associated with risk factors stemming from a professional environment, this problem may affect any person. Palliative care is provided in a challenging environment, where professionals often have to make demanding ethical decisions and deal with death and dying. This article reports on the findings of a (...) systematic review aimed at identifying described burnout levels in palliative care nurses and physicians, and the related risks and protective factors. The main findings indicate that burnout levels in palliative care, or in health care settings related to this field, do not seem to be higher than in other contexts. (shrink)

Volume 19, Issue 12, December 2019, Page 60-62.

This paper offers the Eastern Mediterranean Region (EMR) viewpoint with Qatar as a case for lasting transformation of health systems. The Qatar case study illustrates the importance of research in the development of health policy. It provides description of a series of projects that have been undertaken in relevant national areas such as autism, dementia, genomics, palliative care and patient safety. The paper discourse draws attention to investment requirement in health research systems to respond to country national health priorities and (...) to strengthen public health policies for improving health and social outcomes by narrowing the gap between research and politics. In short, the discussion highlights the following: i) health is a human right marching towards universal health care, with research underpinning every advance in health care and quality medical services; ii) evidence-based research is emerging as a critical tool to aid policy- and decision-makers; iii) investment necessity in healthcare research/systems to enable responding to a country’s national health priorities and to strengthen public health policies; and iv) need for multi-sectoral involvement of stakeholders to bridge the gap between research and politics. Finally, atypical stakeholders’ engagement and bond to politics is a prerequisite to achieve healthcare objectives and policy success so as to reap the benefits of public health results. (shrink)

Background In 2002, Belgium set a legal framework for euthanasia, whereby granting and performing euthanasia is entrusted entirely to physicians, and—as advised by Belgian Medical Deontology—in the context of a trusted patient–physician relationship. Euthanasia is, however, rarely practiced, so the average physician will not attain routine in this matter. Aim To explore how general practitioners in Flanders (Belgium) deal with euthanasia. This was performed via qualitative analysis of semistructured interviews with 52 general practitioners (GPs). Results Although GPs can understand a (...) patient's request for euthanasia, their own willingness to perform it is limited, based on their assumption that legal euthanasia equates to an injection that ends life abruptly. Their willingness to perform euthanasia is affected by the demanding nature of a patient's request, by their views on what circumstances render euthanasia legitimate and by their own ability to inject a lethal dose. Several GPs prefer increasing opioid dosages and palliative sedation to a lethal injection, which they consider to fall outside the scope of euthanasia legislation. Conclusions Four attitudes can be identified: (1) willing to perform euthanasia; (2) only willing to perform as a last resort; (3) feeling incapable of performing; (4) refusing on principle. The situation where GPs have to consider the request and—if they grant it—to perform the act may result in arbitrary access to euthanasia for the patient. The possibility of installing transparent referral and support strategies for the GPs should be further examined. Further discussion is needed in the medical profession about the exact content of the euthanasia law. (shrink)

German legislation demands that decisions about the treatment of mentally incompetent patients require an ‘informed consent’. If this was not given by the patient him-/herself before he/she became incompetent, it has to be sought by the physician from a guardian, who has to be formally legitimized before. Additionally this surrogate has to seek the permission of a Court of Guardianship (Vormundschaftsgericht), if he/she intends to consent to interventions, which pose significant risks to the health or the life of the person (...) under his/her care. This includes ‘end-of-life decisions’. Deviations from this procedure are only allowed in acute emergencies or cases of ‘medical futility’. On the basis of epidemiological and demographical data it can be shown that the vast majority of surrogate decisions on incompetent patients in Germany is not covered by legally valid consent. Moreover, the data suggests that if consent were to be requested according to the legal regulations, both the legal and medical system could realistically never cope with the practical consequences of this. Additionally, empiric research has revealed serious deficits concerning medical ‘end of life-decisions’ and practical performance in palliative care. As a consequence a multidisciplinary discussion has developed in Germany about the reform of present legislation with respect to key-issues like• the assessment of mental competence• the options for exercising patient self-determination via advance directives and durable powers of attorney• the improvement of palliative care facilities,• the clarification of formal procedures for surrogate decision-making in health care and towards the end of life• and the possibilities and their limitations of controlling these decision-making processes ‘externally’ (e.g., by Guardianship Courts or committees).The authors discuss those proposals, which clearly dominate the present debate: They all aim to comply with the scientific basis of German law, jurisdiction and the European traditions of philosophy of health care and bioethics. (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)

In our time there is growing interest in developing a systematic approach to oncologic patients and end-of-life care. An important goal within this domain is to identify the values and ethical norms that guide physicians’ decisions and their recourse to technological aids to preserve life. Though crucial, this objective is not easy to achieve.

Background: Hospital nurses are frequently the first care givers to receive a patient’s request for euthanasia or physician-assisted suicide (PAS). In France, there is no consensus over which medical practices should be considered euthanasia, and this lack of consensus blurred the debate about euthanasia and PAS legalisation. This study aimed to investigate French hospital nurses’ opinions towards both legalisations, including personal conceptions of euthanasia and working conditions and organisation. Methods: A phone survey conducted among a random national sample of 1502 (...) French hospital nurses. We studied factors associated with opinions towards euthanasia and PAS, including contextual factors related to hospital units with random-effects logistic models. Results: Overall, 48% of nurses supported legalisation of euthanasia and 29%, of PAS. Religiosity, training in pallative care/pain management and feeling competent in end-of-life care were negatively correlated with support for legalisation of both euthanasia and PAS, while nurses working at night were more prone to support legalisation of both. The support for legalisation of euthanasia and PAS was also weaker in pain treatment/palliative care and intensive care units, and it was stronger in units not benefiting from interventions of charity/religious workers and in units with more nurses. Conclusions: Many French hospital nurses uphold the legalisation of euthanasia and PAS, but these nurses may be the least likely to perform what proponents of legalisation call “good” euthanasia. Improving professional knowledge of palliative care could improve the management of end-of-life situations and help to clarify the debate over euthanasia. (shrink)

Debate continues over the acts/omissions doctrine, and over the concepts of duty and charity. Such issues inform the debate over the moral permissibility of euthanasia. Recent papers have emphasised moral sensitivity, medical intuitions, and sub-standard palliative care as some of the factors which should persuade us to regard euthanasia as morally unacceptable. I argue that these lines of argument are conceptually misdirected and have no bearing on the bare permissibility of voluntary euthanasia. Further, some of the familiar slippery slope arguments (...) against voluntary euthanasia compromise the principle of autonomy to which both supporters and opponents of euthanasia adhere. I discuss a model for doctor/patient relationships which can be applied to cases which would be seen by all disputants as strong prima facie cases for euthanasia. I argue that in certain cases it will be ordinary medical practitioners who are duty-bound to assist death. (shrink)

This essay addresses mineral water as a medical, experimental and economic material. It focuses on the career of the Reverend Dr William Laing , a physician and cleric who wrote two pamphlets about the water of provincial spa located in Peterhead, a town on the north-east coast of Scotland. I begin by outlining his education and I then reconstruct the medical theory that guided his efforts to identify tonics in the well’s water. Next, I explain why Laing and several other (...) local inhabitants thought themselves to be authorities on the palliative power of the water and I close by showing how such effects were commodified by local entrepreneurs. Although I concentrate primarily upon Peterhead Spa, this study touches upon several issues relevant to the types of medical theory and chemical experimentation that were being used in provincial Scotland during the late eighteenth and early nineteenth centuries. (shrink)

Apresentamos um resumo do desenvolvimento e do contexto institucional do Projecto Humanização dos Cuidados Paliativos em Contexto Domiciliário, aprovado e financiado pela Fundação Calouste Gulbenkian. Utilizam-se largamente os próprios documentos que o justificaram e os relatórios oficiais para dar uma imagem vivida, realista e técnica das dificuldades da profissionalização e reforma dos Cuidados Paliativos, mesmo quando integrada em acções de formação num serviço de um Centro de Tratamento Compreensivo do Cancro. We put forward a synopsis of the development and institutional (...) context of the Project Humanização dos Cuidados Paliativos em Contexto Domiciliário, approved and financed by the Calouste Gulbenkian Foundation. The groundwork documents are widely used as well as official reports so as to convey a lively, realistic and technical image arising from professionalizing and reforming Palliative Medicine even when it is based on in-service training programmes in an Comprehensive Cancer Center. (shrink)

The management of an infant after a decision to withdraw active treatment creates dilemmas. Both lingering death and active killing are undesirable, but palliative interventions can hasten death. We investigated what staff on our neonatal unit thought were the limits of acceptable practice and why. We administered a structured interview to elucidate their views, and asked them to justify their answers. The interviews were analysed quantitatively and qualitatively. A total of 25 participants (15 nurses and 10 doctors) were recruited. 80% (...) emphasized the importance of pain relief following withdrawal, 60% mentioned meeting parental needs at that time. 76% agreed that death can be a desired consequence of withdrawal, yet 52% felt that death should never be hastened. 96% felt that morphine is acceptable after withdrawal, and 72% would give a higher than normal dose if necessary. 56% would stop paralysis at extubation but not reverse it, while 24% would continue paralysis. 16% would consider a drug that ended life instantly in some cases. A wide variety of views emerged, but there were two main positions, a cautious majority, and a more proactive minority. Apparent contradictions within the majority position could be explained using the doctrine of double effect and the acts and omissions distinction. (shrink)

The Hospital Standardised Mortality Ratio (HSMR) is a commonly used measure of hospital mortality that is standardised for age, comorbidities and other factors. By tradition, this statistic has always excluded patients classified as ‘palliative’. The HSMR has never been validated as a reliable measure of quality of care, and it can be very hard to interpret, partly due to difficulties with defining and applying the term ‘palliative’. In this paper, we review the Canadian experience with the palliative status flag, and (...) explain why it is so difficult to define and apply consistently. We also highlight some potential concerns about clinicians labelling inpatients as ‘palliative’ during their admission. Finally, we propose an organisational ethics framework, and six specific suggestions for hospitals to use when publishing statistics such as the HSMR. (shrink)

Dr Gillian Craig (1) has argued that palliative medicine services have tended to adopt a policy of sedation without hydration, which under certain circumstances may be medically inappropriate, causative of death and distressing to family and friends. We welcome this opportunity to defend, with an important modification, the approach we proposed without substantive background argument in our original article (2). We maintain that slowing and eventual cessation of oral intake is a normal part of a natural dying process, that artificial (...) hydration and alimentation (AHA) are not justified unless thirst or hunger are present and cannot be relieved by other means, but food and fluids for (natural) oral consumption should never be 'withdrawn'. The intention of this practice is not to alter the timing of an inevitable death, and sedation is not used, as has been alleged, to mask the effects of dehydration or starvation. The artificial provision of hydration and alimentation is now widely accepted as medical treatment. We believe that arguments that it is not have led to confusion as to whether or not non-provision or withdrawal of AHA constitutes a cause of death in law. Arguments that it is such a cause appear to be tenuously based on an extraordinary/ordinary categorisation of treatments by Kelly (3) which has subsequently been interpreted as prescriptive in a way quite inconsistent with the Catholic moral theological tradition from which the distinction is derived. The focus of ethical discourse on decisions at the end of life should be shifted to an analysis of care, needs, proportionality of medical interventions, and processes of communication. (shrink)

Objective: To determine whether a moral reasoning exercise can improve response quality to surveys of healthcare priorities Methods: A randomised internet survey focussing on patient age in healthcare allocation was repeated twice. From 2574 internet panel members from the USA and Canada, 2020 (79%) completed the baseline survey and 1247 (62%) completed the follow-up. We elicited respondent preferences for age via five allocation scenarios. In each scenario, a hypothetical health planner made a decision to fund one of two programmes identical (...) except for average patient age (35 vs 65 years). Half of the respondents (intervention group) were randomly assigned to receive an additional moral reasoning exercise. Responses were elicited again 7 weeks later. Numerical scores ranging from –5 (strongest preference for younger patients) to +5 (strongest preference for older patients); 0 indicates no age preference. Response quality was assessed by propensity to choose extreme or neutral values, internal consistency, temporal stability and appeal to prejudicial factors. Results: With the exception of a scenario offering palliative care, respondents preferred offering scarce resources to younger patients in all clinical contexts. This preference for younger patients was weaker in the intervention group. Indicators of response quality favoured the intervention group. Conclusions: Although people generally prefer allocating scarce resources to young patients over older ones, these preferences are significantly reduced when participants are encouraged to reflect carefully on a wide range of moral principles. A moral reasoning exercise is a promising strategy to improve response quality to surveys of healthcare priorities. (shrink)

The current Ebola virus epidemic in Western Africa appears to be spiraling out of control. The worst-case projections suggested that the unchecked spread could result in almost 1.4 million cases by the end of January 2015 with a case fatality rate of at least 50%. The United States and European nations have begun to respond in earnest with promises of supplies, isolation beds, and trained health care personnel in an effort to contain the epidemic and care for the sick. However, (...) there is neither a vaccine nor specific treatment for Ebola infection, and therapy is ideally centered on supportive care. I have previously argued that the provision of palliative care is obligatory during an overwhelming health catastrophe, notably pandemic influenza. Since affected Ebola patients have best outcomes with technologically advanced intensive care—resources in scarce supply in the area—I suggest that the only acceptable approach to large numbers of very sick, dying, and suffering Ebola patients who overwhelm the reso.. (shrink)

Apresentam-se os resultados clínicos principais de uma primeira investigação efectuada a familiares de doentes sob tratamento paliativo no domicílio da área de Lisboa, com o instrumento de medida da satisfação SERVQUAL Modificado. Dos 58 familiares/doentes que responderam ao questionário apenas uma minona estava insatisfeita (uma classe de 5 indivíduos mostra-se francamente insatisfeita), uma classe de 15 estava moderadamente satisfeita, havendo 38 individuos fortemente satisfeitos com a qualidade e prontidäo dos serviços prestados. Porém urna percentagem elevada de doentes, segundo a opinião (...) retrospectiva dos cuidadores, faleceu com sintomatologia agravada, nomeadamente dores (60%), obstipação (67%) e depressão/ansiedade (43%). Discute-se a consistência e validade do questionáno SERVQUAL Modificado, contextualizam-se os resultados no que é o standard da prática da MCP e integram-se na promoção da dignidade humana no fim da vida. We present the main clinical findings of research on palliative home care, carried out among relatives of patients in the Lisbon area. An adapted version of SERVQUAL was used. Of a total of 58 carers surveyed only a small number (5) was unsatisfied 15 were only moderately satisfied. 38 family carers were strongly satisfied with the services. Yet, a high percentage of patients, as viewed in retrospect by their relatives died with some aggravated symptoms: 60% with more pain, 67% constipation, and 43% anxiety/depression. We discuss the consistency and validity of this adapted SERVQUAL tool and the main results are contextualized beanng in mind the standard practice of palliative medicine and the pursuit of human dignity in death. (shrink)

This pilot study explores the reasons patients have for refusing chemotherapy, and the ways oncologists respond to them. Our hypothesis, generated from interviews with patients and oncologists, is that an ethical approach that views a refusal as an autonomous choice, in which patients are informed about the pros and cons of treatment and have to decide by weighing them, is not sufficient. A different ethical approach is needed to deal with the various evaluations that play a role in treatment refusal. (...) If patients forgo further treatment, while curative or palliative methods are available, there is no perspective from which to integrate the weighing of pros and cons of treatment and the preferences and values of individual cancer patients. A discrepancy thus results as regards what “good reasons” are, evoking misunderstandings or even breaking off communication. Suggestions are given for follow up research. (shrink)