Introduction: Congruence, understood as the agreement between the patient's preferred place of death and their actual place of death, is emerging as one of the main variables indicating the quality of end-of-life care. The aim of this research was to conduct a systematic literature review on levels and determinants of congruence in palliative patients over the period 2010–2021.Method: A systematic review of the literature in the databases of PubMed, Scopus, Web of Science, PsycINFO, CINAHL, Cuiden, the Cochrane Library, (...) CSIC Indexes, and IBECS. Information was extracted on research characteristics, congruence, and associated factors.Results: A total of 30 studies were identified, mainly of retrospective observational design. The congruence values varied substantially between the various studies, ranging from 21 to 100%. The main predictors of congruence include illness-related factors, individual factors, and environmental factors.Conclusion: This review, in comparison with previous studies, shows that treatment-related factors such as physical pain control, marital status, having a non-working relative, age, discussing preferred place of death with a healthcare professional, and caregiver's preference have been associated with higher levels of congruence. Depending on the study, other factors have been associated with either higher or lower congruence, such as the patient's diagnosis, gender, or place of residence. This information is useful for designing interventions aimed towards greater congruence at the end of life. (shrink)

The aim of this study was to explore patients’ experiences of using the Integrated Palliative care Outcome Scale (IPOS) during specialized palliative home care. The study adopted a qualitative approach with an interpretive descriptive design. Interviews were performed with 10 patients, of whom a majority were diagnosed with incurable cancer. Our findings suggest that the use of IPOS as a basis for conversation promotes safe care by making the patients feel confident that the care provided (...) was adapted to them which gives them a sense of safety. IPOS facilitated discussions between patients and nurses about care needs. The patients believed that using IPOS enabled reflection on their well‐being and life situation. In conclusion, the study finds that using IPOS is beneficial and provide ways to enable person‐centered care and with advantage could be used in specialized palliative home care. The results may help overcome barriers and facilitate the use of patient‐reported outcome measures (PROMs). To enable the use of PROMs such as IPOS in palliative home care, nurses need education and opportunities to develop routines that enable patients’ voice to be heard and thereby compose a basis for care. (shrink)

The article explores the underlying reasons for patients’ self‐perception of being a burden (SPB) in family settings, including its impact on relationships when wishes to die (WTD) are expressed. In a prospective, interview‐based study of WTD in patients with advanced cancer and non‐cancer disease (organ failure, degenerative neurological disease, and frailty) SPB was an important emerging theme. In a sub‐analysis we examined (a) the facets of SPB, (b) correlations between SPB and WTD, and (c) SPB as a relational (...) phenomenon. We analyzed 248 interviews with 62 patients, their family caregivers, and professionals using grounded theory and interpretive phenomenological analysis. SPB appeared as important empathic concern in care situations. Patients expressed many sorts of concerns for others, but also perceived an altered self‐understanding that did not meet mutual expectations within relationships. In SPB associated with WTD three constellations were found: (a) WTD to unburden others; (b) patients decided against hastening death to prevent being a further burden to others (in these cases, the SPB counteracted the wish to die); and (c) both wishes for and against dying were sustained by SPB. These patients often felt paralyzed and suffered deeply. Family caregivers felt emotionally touched by SPB and tried to unburden patients by caring and compassion. We concluded that the impact of SPB on a WTD and the various meanings the facets of SPB have in balancing relationships need to be worked out individually. An early palliative and narrative approach is warranted. (shrink)

Palliative Care Nursing: Caring for Suffering Patients explores the concept of suffering as it relates to nursing practice. This text helps practicing nurses and students define and recognize various aspects of suffering across the lifespan and within various patient populations while providing guidance in alleviating suffering. In addition, it examines spiritual and ethical perspectives on suffering and discusses how witnessing suffering impacts nurses' ability to assume the professional role. Further, the authors discuss ways nurses as witnesses to suffering (...) can optimize their own coping skills and facilitate personal growth. Rich in case studies, pictures, and reflections on nursing practice and life experiences, Palliative Care Nursing: Caring for Suffering Patients delves into key topics such as how to identify when a patient is suffering, whether they are coping, sources of coping facades, what to do to ease suffering, and how to convey the extent of suffering to members of the health care team.Palliative Care Nursing: Caring for Suffering Patients helps practicing nurses and students define and recognize various aspects of suffering across the lifespan and within various patient populations while providing guidance in alleviating suffering. (shrink)

Wish to die statements are becoming a frequent phenomenon in terminally ill patients. Those confronted by these statments need to understand the complexity of such wishes, so they can respond competently and compassionately to the requests. If misunderstood, the statements can be taken at face-value and the practitioner may not recognise that a patient is in fact experiencing ambivalent feelings at the end of life, or they may misinterpret the expressed wish to die as a sign of clinical depression. (...) Public debate about the morality and ethics of various end-of-life care options has exploded in recent years. However, it has never been sensitive to the finer aspects of clinical reality or the experiences of patients. The Patient's Wish to Die: Research, Ethics, and Palliative Care brings together that reality and the patient's voice, combining them with different research approaches. It presents the best available knowledge and research methodologies about patients' wishes at the end-of-life, together with a series of ethical views and a discussion about the clinical implications for palliative care. The book presents material in an open and unbiased manner whilst remaining sensitive to the spiritual and existential dimensions of dying, and to the different cultural views that provide meaning to the individual. Written by the best specialists and ethics scholars from around the world, including palliative care practitioners and end-of-life scholars from countries where assisted dying practices are legalized and from those where it isn't, The The Patient's Wish to Die: Research, Ethics, and Palliative Care will prove essential reading for all those working or studying in the field of palliative care. (shrink)

The Patients Changing Things Together (PATCHATT) programme supports individuals with a life-limiting illness to lead a change that matters to them. Individuals join a facilitated online peer support group to identify an issue they feel strongly about, plan for change and take action to bring that change about. The programme is developed and guided by a Programme Advisory Group with clinical and lay membership. This article charts the trialling of the patients changing thing together ethics pack, designed to (...) support all members of the Programme Advisory Group in taking an equal role in ethical decision-making as they guide the programme's ongoing development. As a trial of its efficacy, the pack was used by the author to consider an ethical dilemma at the heart of the development of the Patients Changing Things Together programme, that is, is it ethical to offer a community palliative care programme which has the potential to bring participants harm as well as good? The author reports a strong ethical argument for offering this programme, while concluding the need for the Programme Advisory Group to make the final decision, using the Patients Changing Things Together ethics pack to consider the results of the evaluation of the programme's pilot. The article concludes that this pack provides an effective tool to guide ethical novices through the ethical complexities of developing a community-based palliative care intervention programme. It raises the issue that such inclusivity is achieved through a normative decision-making process which denies the fluidity and creativity which may inform the best ethical decision-making practice. (shrink)

The patient’s home is a common setting for palliative care. This means that we need to understand current palliative care philosophy and how its goals can be realized in home‐care nursing encounters (HCNEs) between the nurse, patient and patient’s relatives. The existing research on this topic describes both a negative and a positive perspective. There has, however, been a reliance on interview and descriptive methods in this context. The aim of this study was to explore planned HCNEs in (...) palliative care. The design was a multiple case study based on observations. The analysis includes a descriptive and an explanation building phase. The results show that planned palliative HCNEs can be described as a process of co‐creating possibilities for the patient to reach vital goals through shared knowledge in a warm and caring atmosphere, based on good caring relations. However, in some HCNEs, co‐creation did not occur: Wishes and needs were discouraged or made impossible and vital goals were not reached for the patients or their relatives. Further research is needed to understand why. The co‐creative process presented in this article can be seen as a concretization of the palliative care ideal of working with a person‐centered approach. (shrink)

In this paper, we explore the desires that play a role at the palliative stage and relate them to various approaches to patient autonomy. What attitude can physicians and other caregivers take to the desires of patients at the palliative stage? We examine this question by introducing five physicians who are consulted by Jackie, an imaginary patient with metastatic lung carcinoma. By combining the models of the physician-patient relationship developed by Emanuel and Emanuel (1992) and the Hellenistic (...) approaches to desires analyzed by Nussbaum (1994), five different ways of dealing with desires in the context of palliative care are sketched. The story of Jackie shows that desires are to a certain extent responsive to reasoning. In the palliative process, that can be a reason to devote attention to the desires of patients and caregivers and to determine which desires need to be fulfilled, which are less important, and how they are linked to emotions the patient has. (shrink)

Ein gelungenes Arzt-Patient-Verhältnis, das auf gegenseitigem Vertrauen und ärztlicher Verantwortung basiert, ist ein zentraler Bestandteil des Ideals der ärztlichen Profession. Aktuell wird vielfach von einem neuen „ökonomischen Paradigma“ in der Medizin gesprochen, das dieses Verhältnis vermeintlich unterminiert. Als ein wichtiges Merkmal dieses Paradigmas gilt das Verständnis vom Patienten als Kunden, der charakterisiert ist durch seine Selbstbestimmung bzw. Autonomie. Wie stellt sich die Kundenrolle nun aber bei vulnerablen Patientengruppen dar, die in ihrer Autonomie eingeschränkt sind, und was bedeutet dies wiederum für (...) das Arzt-Patient-Verhältnis? In dem vorliegenden Artikel wollen wir deshalb die Fragestellung verfolgen, ob sich ärztliche Verantwortung bzw. das Arzt-Patient-Verhältnis ändert, wenn sich der (vulnerable) Patient als Kunde begreift. Als Analysesetting dient die Palliativmedizin, da sie als Beispiel für eine besonders vulnerable Patientengruppe gelten kann. Als Basis der Argumentation werden die Ergebnisse einer qualitativen Studie herangezogen, welche die Einstellungen von Palliativpatienten zum Thema „der Patient als Kunde“ erhob sowie der Frage nachging, ob sich Palliativpatienten, speziell im Rahmen von medizinischen Entscheidungen, als selbstbestimmt begreifen. Die Studienergebnisse zeigen, dass Autonomie relational verstanden werden muss und dem Arzt eine entscheidende Rolle in der Ermöglichung von Patientenselbstbestimmung zukommt – ganz unabhängig von der Selbstattribuierung der Befragten als Kunde oder Patient. Anschließend werden diese Ergebnisse dahingehend analysiert, ob sie als Ausdruck einer Veränderung des Arzt-Patient-Verhältnisses und der ärztlichen Verantwortung gegenüber den Patienten zu werten sind. Hieraus folgernd wird nach den praktischen Implikationen für das Arzt-Patient-Verhältnis auf der Grundlage der „Ethics of Care“ gefragt sowie auf die individuelle Betreuungsnotwendigkeit, speziell von vulnerablen Patientengruppen, verwiesen. (shrink)

Background:Ideas of patient involvement are related to notions of self-determination and autonomy, which are not always in alignment with complex interactions and communication in clinical practice.Aim:To illuminate and discuss patient involvement in routine clinical care situations in nursing practice from an ethical perspective.Method:A case study based on an anthropological field study among patients with advanced cancer in Denmark.Ethical considerations:Followed the principles of the Helsinki Declaration.Findings:Two cases illustrated situations where nurses refused patient involvement in their own case.Discussion:Focus on two ethical (...) issues, namely ‘including patients’ experiences in palliative nursing care’ and ‘relational distribution of power and knowledge’, inspired primarily by Hannah Arendt’s concept of thoughtlessness and a Foucauldian perspective on the medical clinic and power. The article discusses how patients’ palliative care needs and preferences, knowledge and statements become part of the less significant background of nursing practice, when nurses have a predefined agenda for acting with and involvement of patients. Both structurally conditioned ‘thoughtlessness’ of the nurses and distribution of power and knowledge between patients and nurses condition nurses to set the agenda and assess when and at what level it is relevant to take up patients’ invitations to involve them in their own case.Conclusion:The medical and institutional logic of the healthcare service sets the framework for the exchange between professional and patient, which has an embedded risk that ‘thoughtlessness’ appears among nurses. The consequences of neglecting the spontaneous nature of human action and refusing the invitations of the patients to be involved in their life situation call for ethical and practical reflection among nurses. The conditions for interaction with humans as unpredictable and variable challenge nurses’ ways of being ethically attentive to ensure that patients receive good palliative care, despite the structurally conditioned logic of healthcare. (shrink)

Los cuidados paliativos deben manejar los diferentes problemas que los pacientes y las familias pueden tener al final de la vida. La sedación es una maniobra terapéutica utilizada con cierta frecuencia en cuidados paliativos y constituye una buena práctica médica cuando está bien indicada; sin embargo, presenta el riesgo de conculcar algunos principios éticos. Los principios de beneficencia y autonomía son posiblemente los principios éticos mayormente afectados cuando se considera la sedación. Se deben cumplir los siguientes requisitos: síntoma refractario, enfermedad (...) terminal y consentimiento, y en lo posible estar avalada por una segunda opinión médica. La sedación paliativa no es eutanasia y las diferencias están en el objetivo, el proceso y el resultado. En el presente trabajo se discuten algunos de los aspectos para prevenir la conculcación de los principios éticos, asimismo se proporcionan algunas sugerencias para ayudar en la toma de decisiones. Palliative care to the different problems encountered by patients and their families at the end of life. Sedation is a therapeutic manoeuvre frequently used in palliative medicine, that could eventually infringe some ethical principles. From our standpoint, beneficence and autonomy are probably the most affected principles when sedation is considered. The following conditions are required in order for it to be applied: refractory symptom, terminal illness and consent, and as long as possible, the decision must be supported by a second medical opinion Palliative sedation is different from euthanasia, and the differences lie in the objective, the pro- cess and the result. Some measures to prevent such violations to occur are discussed, and suggestions intended to guide in decision making are proposed. (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)

We agree with Lynch et al. that patients with chronic diseases and Band-Aid treatments are unlikely to benefit from a version of Operation Warp Speed or by deprioritizing standards of scientific ev...

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)

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 (...) class='Hi'>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)

A case of conflict in pediatric end-of-life decision making is presented to compare the complementary roles of clinical ethics consultants and palliative care specialists. The progression of the case illustrates the differing structures, goals, and methods of the majority of such teams. The strengths of each of consultation are emphasized. Particularly in centers where palliative care services are not available, it can be important for careproviders and clinical ethics consultants to focus on alliance-building and a longitudinal relationship with (...) patients and families. (shrink)

ZusammenfassungEin gelungenes Arzt-Patient-Verhältnis, das auf gegenseitigem Vertrauen und ärztlicher Verantwortung basiert, ist ein zentraler Bestandteil des Ideals der ärztlichen Profession. Aktuell wird vielfach von einem neuen „ökonomischen Paradigma“ in der Medizin gesprochen, das dieses Verhältnis vermeintlich unterminiert. Als ein wichtiges Merkmal dieses Paradigmas gilt das Verständnis vom Patienten als Kunden, der charakterisiert ist durch seine Selbstbestimmung bzw. Autonomie. Wie stellt sich die Kundenrolle nun aber bei vulnerablen Patientengruppen dar, die in ihrer Autonomie eingeschränkt sind, und was bedeutet dies wiederum für (...) das Arzt-Patient-Verhältnis? In dem vorliegenden Artikel wollen wir deshalb die Fragestellung verfolgen, ob sich ärztliche Verantwortung bzw. das Arzt-Patient-Verhältnis ändert, wenn sich der (vulnerable) Patient als Kunde begreift. Als Analysesetting dient die Palliativmedizin, da sie als Beispiel für eine besonders vulnerable Patientengruppe gelten kann. Als Basis der Argumentation werden die Ergebnisse einer qualitativen Studie herangezogen, welche die Einstellungen von Palliativpatienten zum Thema „der Patient als Kunde“ erhob sowie der Frage nachging, ob sich Palliativpatienten, speziell im Rahmen von medizinischen Entscheidungen, als selbstbestimmt begreifen. Die Studienergebnisse zeigen, dass Autonomie relational verstanden werden muss und dem Arzt eine entscheidende Rolle in der Ermöglichung von Patientenselbstbestimmung zukommt – ganz unabhängig von der Selbstattribuierung der Befragten als Kunde oder Patient. Anschließend werden diese Ergebnisse dahingehend analysiert, ob sie als Ausdruck einer Veränderung des Arzt-Patient-Verhältnisses und der ärztlichen Verantwortung gegenüber den Patienten zu werten sind. Hieraus folgernd wird nach den praktischen Implikationen für das Arzt-Patient-Verhältnis auf der Grundlage der „Ethics of Care“ gefragt sowie auf die individuelle Betreuungsnotwendigkeit, speziell von vulnerablen Patientengruppen, verwiesen. (shrink)

Palliative care is a recent branch of health care. The doctors, nurses, and other professionals involved in it took their inspiration from the medieval idea of the hospice, but have now extended their expertise to every area of health care: surgeries, nursing homes, acute wards, and the community. This has happened during a period when patients wish to take more control over their own lives and deaths, resources have become scarce, and technology has created controversial life-prolonging treatments. (...) class='Hi'>Palliative care is therefore faced with more ethical problems that other areas of health care. This book, by a clinician, teacher, and writer on health care ethics, has been written to provide all those who care for the terminally ill--doctors, nurses, social workers, clergymen, physiotherapists--with the concepts and principles which will assist them with difficult decisions. It challenges many received doctrines of palliative care, but its well-illustrated central theme is that technical expertise must be controlled by humane, non-technical judgments. (shrink)

Cultural values influence how people understand illness and dying, and impact their responses to diagnosis and treatment, yet end-of-life care is rooted in white, middle class values. Faith, hope, and belief in God’s healing power are central to most African Americans, yet life-preserving care is considered “aggressive” by the healthcare system, and families are pressured to cease it.

Patients with advanced dementia are less likely than those with other terminal illnesses to receive palliative care. Due to the nature and course of dementia, there may be a failure to recognize the terminal stage of the disease. A possible and under-investigated explanation for this healthcare disparity is the healthcare practitioner who plays a primary role in end-of-life decision-making. Two potential areas that might impact provider decision-making are cognitive biases and moral considerations. In this analysis, we demonstrate how (...) the cognitive biases and moral considerations of practitioners related to clinical decision-making are inherent in clinical practice and may impact on providers’ accuracy related to diagnostic and treatment related decision-making associated with patients with advanced dementia. Anchoring, default, availability, representativeness and framing biases are cognitive biases based on the "Two System Model" that relate to decision-making in end-of-life care. In patients with advanced dementia, those biases may result in a tendency to adhere to traditional mandatory care, involving an aggressive approach to care, which values saving lives at all costs, without taking into account the possible suffering and long-term consequences. Aspects such as moral sensitivity and moral courage play an important role in ethical decision-making related to advanced dementia. Investigations of clinical decision-making that include the cognitive biases and ethical considerations of practitioners might advance the comprehensive understanding of the clinical decision-making process related to care of patients with advanced dementia and promote the quality of care given to this population. (shrink)

BackgroundContradictory evidence exists about the emotional burden of participating in qualitative research for palliative care patients and carers and this raises questions about whether this type of research is ethically justified in a vulnerable population. This study aimed to investigate palliative care patients' and carers' perceptions of the benefits and problems associated with open interviews and to understand what causes distress and what is helpful about participation in a research interview.MethodsA descriptive qualitative study. The data were (...) collected in the context of two studies exploring the experiences of care of palliative care patients and carers. The interviews ended with questions about patients' and carers' thoughts on participating in the studies and whether this had been a distressing or helpful event. We used a qualitative descriptive analysis strategy generated from the interviews and the observational and interactional data obtained in the course of the study.ResultsThe interviews were considered helpful: sharing problems was therapeutic and being able to contribute to research was empowering. However, thinking about the future was reported to be the most challenging. Consent forms were sometimes read with apprehension and being physically unable to sign was experienced as upsetting. Interviewing patients and carers separately was sometimes difficult and not always possible.ConclusionThe open interview enables the perspectives of patients and carers to be heard, unfettered from the structure of closed questions. It also enables those patients or carers to take part who would be unable to participate in other study designs. The context is at least as important as the format of the research interview taking into account the relational circumstances with carers and appropriate ways of obtaining informed consent. Retrospective consent could be a solution to enhancing participants control over the interview. (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)

To fulfill their crucial duty of relieving suffering in their patients, physicians may have to administer palliative sedation when they implement treatment-limitation decisions such as the withdrawal of life-supporting interventions in patients with poor prognosis chronic severe brain injury. The issue of palliative sedation deserves particular attention in adults with serious brain injuries and in neonates with severe and irreversible brain lesions, who are unable to express pain or to state their wishes. In France, treatment limitation (...) decisions for these patients are left to the physicians. Treatment-limitation decisions are made collegially, based on the presence of irreversible brain lesions responsible for chronic severe disorders of consciousness. Before these decisions are implemented, they are communicated to the relatives. Because the presence and severity of pain cannot be assessed in these patients, palliative analgesia and/or sedation should be administered. However, palliative sedation is a complex strategy that requires safeguards to prevent a drift toward hastening death or performing covert euthanasia. In addition to the law on patients' rights at the end of life passed in France on April 22, 2005, a recent revision of Article 37 of the French code of medical ethics both acknowledges that treatment-limitation decisions and palliative sedation may be required in patients with severe brain injuries and provides legal and ethical safeguards against a shift towards euthanasia. This legislation may hold value as a model for other countries where euthanasia is illegal and for countries such as Belgium and Netherlands where euthanasia is legal but not allowed in patients incapable of asking for euthanasia but in whom a treatment limitation decision has been made. (shrink)

We read with interest the extended essay published from Riisfeldt and are encouraged by an empirical ethics article which attempts to ground theory and its claims in the real world. However, such attempts also have real-world consequences. We are concerned to read the paper’s conclusion that clinical evidence weakens the distinction between euthanasia and normal palliative care prescribing. This is important. Globally, the most significant barrier to adequate symptom control in people with life-limiting illness is poor access to opioid (...) analgesia. Opiophobia makes clinicians reluctant to prescribe and their patients reluctant to take opioids that might provide significant improvements in quality of life. We argue that the evidence base for the safety of opioid prescribing is broader than that presented, restricting the search to palliative care literature produces significant bias as safety experience and literature for opioids and sedatives exists in many fields. This is not acknowledged in the synthesis presented. By considering additional evidence, we reject the need for agnosticism and reaffirm that palliative opioid prescribing is safe. Second, palliative sedation in a clinical context is a poorly defined concept covering multiple interventions and treatment intentions. We detail these and show that continuous deep palliative sedation is a specific practice that remains controversial globally and is not considered routine practice. Rejecting agnosticism towards opioids and excluding CDPS from the definition of routine care allows the rejection of Riisfeldt’s headline conclusion. On these grounds, we reaffirm the important distinction between palliative care prescribing and euthanasia in practice. (shrink)

Practitioners of palliative medicine frequently encounter patients suffering distress caused by uncontrolled pain or other symptoms. To relieve such distress, palliative medicine clinicians often use measures that result in sedation of the patient. Often such sedation is experienced as a loss by patients and their family members, but sometimes such sedation is sought as the desired outcome. Peace is wanted. Comfort is needed. Sedation appears to bring both. Yet to be sedated is to be cut off (...) existentially from human experience, to be made incapable of engaging self-consciously in any human action. To that extent, it seems that to lose consciousness is to lose something of real value. In this paper, I describe how sedation and the question of intentionally bringing about sedation arise in the care of patients with advanced illness, and I propose heuristics to guide physicians, including Christian physicians, who seek to relieve suffering without contradicting their profession to heal. (shrink)

Billions of animals live and die under deplorable conditions in factory farms. Despite significant efforts to reduce human consumption of animal products and to encourage more humane farming practices, the number of factory-farmed animals is nevertheless on an upward trajectory. In this paper, we suggest that the high levels of suffering combined with short life-expectancies make the situation of many factory-farmed animals relevantly similar to that of palliative patients. Building on this, we discuss the radical option of seeking (...) to reduce the suffering of factory-farmed animals through the use of drugs that alleviate pain and distress, administered under a regimen where experiential wellbeing is prioritized over the aim of avoiding drug-dependence. (shrink)

BackgroundMeasuring the outcomes of palliative care plays an important role to improve the quality, efficiency, and availability of these services in patients with cancer. Using valid, reliable, and culturally appropriate tools has a considerable role to measure these outcomes. This study aimed to assess the psychometric properties of the translated version of the Palliative care Outcome Scale.MethodsThis methodological study was conducted in two outpatient clinics related to Shohada Tajrish and Baqiyatallah hospitals in Tehran in 2019–2020. The translation (...) was done using the Forward-Backward approach after gaining permission from the developer. Face validity was tested with 10 patients with cancer through cognitive interviewing, as well as content validity with four experts. Construct validity was performed by exploratory factor analysis and confirmation. To assess the reliability, internal consistency was assessed by using Cronbach's alpha coefficient, and relative stability was assessed using the interclass correlation coefficient. Furthermore, interpretability and ceiling and floor effects were assessed.ResultsA total of 353 patients with cancer under palliative care were included in the study. Then, three psychological, physical, and social factors with a cumulative variance of 54.34% were extracted in exploratory factor analysis. Confirmatory factor analysis showed that the model has a good fit of information. Cronbach's alpha coefficient for scale was 0.719. Furthermore, the ICC was 0.812. The scale was interpretable, and ceiling and floor effects were 0%.ConclusionPersian version of the POS was evaluated as a valid and reliable tool. Therefore, it can be used by the clinician to monitor the consequences of palliative care in Iranian cancer patients. (shrink)

Palliative sedation is an option of last resort to control refractory suffering. In order to better understand palliative-care nurses’ attitudes to palliative sedation, an anonymous questionnaire was sent to all nurses (589) employed in palliative care in Flanders (Belgium). In all, 70.5% of the nurses (n = 415) responded. A large majority did not agree that euthanasia is preferable to palliative sedation, were against non-voluntary euthanasia in the case of a deeply and continuously sedated patient (...) and considered it generally better not to administer artificial floods or fluids to such a patient. Two clusters were found: 58.5% belonged to the cluster of advocates of deep and continuous sedation and 41.5% belonged to the cluster of nurses restricting the application of deep and continuous sedation. These differences notwithstanding, overall the attitudes of the nurses are in accordance with the practice and policy of palliative sedation in Flemish palliative-care units. (shrink)

Most models of patient-physician communication take decision-making as a central concept. However, we found that often the treatment course of metastatic cancer patients is not easy to describe in straightforward terms used in decision-making models but is instead frequently more erratic. Our aim was to analyse these processes as trajectories. We used a longitudinal case study of 13 patients with metastatic colorectal and pancreatic cancer for whom palliative chemotherapy was a treatment option, and analysed 65 semi-structured interviews. (...) We analysed three characteristics of the treatment course that contributed to the ‘erraticness’ of the course: (1) The treatment (with or without chemotherapy) contained many options; (2) these options were not stable entities to be decided upon, but changed identity over the course of treatment, and (3) contrary to the closure (option X means no option Y, Z, etc.) a decision implies, the treatment course was a continuous process in which options instead remained open. When the treatment course is characterised by these many and changeable options that do not result in closure, the shared decision-making model should take these into account. More attention needs to be paid to the erratic character of the process in which the doctor has to provide continuous information that is related to the changing situation of the patient; also, flexibility in dealing with protocols is warranted, as is vigilance about the overall direction of the process. (shrink)

In September 1998 the Bundesrztekammer, i.e., the German Medical Association, published new principles concerning terminal medical care. Even before publication, a draft of these principles was very controversial, and prompted intense public debate in the mass media. Despite some of the critics' suspicions that the principles prepared the way for liberalization of active euthanasia, euthanasia is unequivocally rejected in the principles. Physician-assisted suicide is considered to violate professional medical rules. In leaving aside some of the notions customarily used in the (...) euthanasia debate, e.g., passive euthanasia, the principles emphasize the obligation of physicians to offer and the right of patients to receive palliative care. The principles explicitly list modalities of basic treatment that are indispensable in all cases, such as the obligation to satisfy hunger and thirst. This statement is meant to resolve the dispute on nutrition and hydration at the end of life, as it shifts the focus of care from maintaining physiological parameters to satisfying subjective needs. For patients in a persistent vegetative state, artificial feeding is held to be obligatory. Yet, the principles make reference to recent German jurisdiction which permit the stopping of artificial feeding if it is in accordance with the patient's presumed will. Additionally, the wording concerning this issue is found to remain unclear. Patients' autonomy is strengthened by explicitly welcoming advance directives as a means to ascertain patients' wills. The principles mark some changes compared to earlier documents. They deserve careful analysis and should be considered in the international debate on issues concerning the end of life. (shrink)

Background Traditionally, palliative care has focused on patients suffering from life-threatening somatic diseases such as cancer or progressive neurological disorders. In contrast, despite the often chronic, severely disabling, and potentially life-threatening nature of psychiatric disorders, there are neither palliative care units nor clinical guidelines on palliative measures for patients in psychiatry. Main text This paper contributes to the growing literature on a palliative approach in psychiatry and is based on the assumption that a change (...) of perspective from a curative to a palliative approach could help promote patient-centeredness and increase quality of life for severely ill patients in psychiatry as well as in somatic medicine. To exemplify this, we offer three different clinical scenarios: severe and enduring anorexia nervosa, treatment-refractory schizophrenia, and chronic suicidality and persistent self-injury in borderline personality disorder. Conclusion We emphasize that many typical interventions for treatment-refractory psychiatric disorders may indeed be of a palliative nature. Furthermore, introducing traditional features of palliative care, e.g. so-called goals of care conversations, could aid even further in ensuring that caregivers, patients, and families agree on which treatment goals are to be prioritized in order to optimize quality of life in spite of severe, persistent mental disorder. (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 (...) 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)

Background: Audio-visual teleconsultation is expected to help home-based palliative patients, hospital-based palliative care professionals, and family physicians to jointly design better, pro-active care. Consensual knowledge of the possibilities and limitations of teleconsultation in transmural palliative care is, however, largely lacking.This paper aims at describing elements of both the physical workplace and the cultural-social context of the palliative care practice, which are imperative for the use of teleconsultation technologies. Methods: A semi-structured expert meeting and qualitative, open (...) interviews were deployed to explore professionals’ assumptions and wishes, which are considered to contain latent presumptions about the practice’s physical workplace and latent elements of the cultural-social context, regarding (1) the mediating potential of audio-visual teleconsultation, (2) how the audio-visual teleconsultations will affect medical practice, and (3) the design and usage of the teleconsultation technology. We used a qualitative analysis to investigate how palliative care professionals interpret the teleconsultation package in preparation. The analysis entailed open and axial coding techniques developed in a grounded theory approach. Results: Respondents assume: 1. teleconsultation will hinder physical proximity, thereby compromising anamnesis and diagnosis of new or acutely ill patients as well as “real contact” with the person behind the patient; 2. teleconsultation will help patients becoming more of a pivotal figure in their own care trajectory; 3. they can use teleconsultation to keep a finger on the pulse; 4. teleconsultations have a healing effect of their own due to offered time and digital attention; 5. teleconsultation to open up an additional “gray” network outside the hierarchical structures of the established chain of transmural palliative care. This network could cause bypassing of caregivers and uncertainty about responsibilities; 6. teleconsultations lead to an extended flow of information which helps palliative care professionals to check the stories of patients and medical specialists. Conclusions: Professionals assume teleconsultation co-defines a new patient–professional relationship by extending hospital-based caregivers’ perceptions of as well as attention for their patients. At the cost, however, of clinical and personal connectedness. Secondly, a hermeneutics is needed to carefully interpret teleconsultation images. Thirdly, teleconsultations transform caregiving cultures as formerly separated care domains collide, demanding a redefinition of roles and responsibilities. (shrink)

Background Palliative care is an integral part of health care, which in term has become increasingly technologized in recent decades. Lately, innovative smart sensors combined with artificial intelligence promise better diagnosis and treatment. But to date, it is unclear: how are palliative care concepts and their underlying assumptions about humans challenged by smart sensor technologies (SST) and how can care benefit from SST? -/- Aims The paper aims to identify changes and challenges in palliative care due to (...) the use of SST. In addition, normative guiding criteria for the use of SST are developed. -/- Methods The principle of Total Care used by the European Association for Palliative Care (EAPC) forms the basis for the ethical analysis. Drawing on this, its underlying conceptions of the human and its socio-ethical aspects are examined with a phenomenological focus. In the second step, the advantages, limitations, and socio-ethical challenges of using SST with respect to the Total Care principle are explored. Finally, ethical-normative requirements for the application of SST are derived. -/- Results and Conclusion First, SST are limited in their measurement capabilities. Second, SST have an impact on human agency and autonomy. This concerns both the patient and the caregiver. Third, some aspects of the Total Care principle are likely to be marginalized due to the use of SST. The paper formulates normative requirements for using SST to serve human flourishing. It unfolds three criteria according to which SST must be aligned: (1) evidence and purposefulness, (2) autonomy, and (3) Total Care. (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)

Multiprofessional teams have become in recent years one of the distinguishing features of services, where professionals with different competences work together. The core of our interest is addressed to the équipe of a palliative care ward; in particular, to that series of working activities that consists of communicative acts, as équipe meetings, for instance. Our research focuses on the analysis of the process by which the development of knowledge in multiprofessional practice is built to establish more information on recurrent (...) patterns in the interaction and connect them to the specific context that these are shaped by. In this sense we will underline how components of knowing are shared among team members in constructing medical prognosis and we will analyse the connection among language processes, cognitive activities and social structures. More specifically, we will study the role of language and the context in the definition of linguistic acts in cognitive activities and in hierarchies involved in decision-making processes by exploring and pointing out how it is organised and structured. In particular through the study of talk-in-interaction where interchange of information is realised, we will emphasise how, in the multiprofessional équipe meeting, the realisation of practices and the knowledge useful to collaborative management of ward working life are established. To reach this aim, we adopted an ethnographic approach connected to the analysis of the situated interaction. (shrink)

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

Background: In the last two decades, nursing authors have published ethical analyses of palliative sedation—an end-of-life care practice that also receives significant attention in the broader medical and bioethics literature. This nursing literature is important, because it contributes to disciplinary understandings about nursing values and responsibilities in end-of-life care. Research aim: The purpose of this project is to review existing nursing ethics literature about palliative sedation, and to analyze how nurses’ moral identities are portrayed within this literature. Research (...) design: We reviewed discussion papers, written by nurses about the ethics of palliative sedation, which were cited in MEDLINE, CINAHL, Nursing and Allied Health, or Philosopher’s Index (search date March 2018). Twenty-one papers met selection criteria. We performed a comprehensive review and analysis (using the Qualitative Analysis Guide of Leuven), of the values, responsibilities, and relationships reflected in authors’ portrayal of the nursing role. Findings: Two different tones are apparent in the extant nursing ethics literature. One is educational, while the other is critically reflective. Irrespective of tone, all authors agree on the alleviation of suffering as a fundamental nursing responsibility. However, they differ in their analysis of this responsibility in relation to other values in end-of-life care, including those that depend on consciousness. Finally, authors emphasize the importance of subjective and experience-based understandings of palliative sedation, which they argue as depending on nurses’ proximity to patients and families in end-of-life care. Discussion and conclusion: Based on our findings, we develop three recommendations for future writing by nurses about palliative sedation. These relate to the responsibility of recognizing how consciousness might matter in (some) peoples’ moral experiences of death and dying, to the importance of moral reflectiveness in nursing practice, and to the value of a relational approach in conceptualizing the nursing ethics of palliative sedation. (shrink)

Many countries have not considered palliative care a public health problem. With limited resources, disease-oriented therapies and prevention measures take priority. In this paper, I intend to describe the moral framework for considering palliative care as a public health priority in resource-poor countries. A distributive theory of justice for health care should consider integrative palliative care as morally required as it contributes to improving normal functioning and preserving opportunities for the individual. For patients requiring terminal care (...) , we are guided less by principles of justice and more by the duty to relieve suffering and society's commitment to protecting the professional's obligation to uphold principles of beneficence, compassion and non-abandonment. A fair deliberation process is necessary to allow these strong moral commitments to serve as reasons when setting priorities in resource poor countries. (shrink)