Objective: Characterize hospice staff practices and perspectives on discussing end-of-life care preferences with patients/families, including those desiring intensive treatment and/or full code.
Background: Patients in the United States can elect hospice while remaining full code or seeking intensive interventions, for example, blood transfusions, or chemotherapy. These preferences conflict with professional norms, hospice philosophy, and Medicare hospice payment policies. Little is known about how hospice staff manage patient/family preferences for full-code status and intensive treatments.
Methods: We recruited employees of four nonprofit US hospices with varying clinical and hospice experience for semi-structured, in-depth interviews. Open-ended questions explored participants' practices and perceptions of discussing end-of-life care preferences in hospice, with specific probes about intensive treatment or remaining full code. Interdisciplinary researchers coded and analyzed data using the constant comparative method.
Results: Participants included 25% executive leaders, 14% quality improvement administrative staff, 61% clinicians (23 nurses, 21 social workers, 7 physicians, and 2 chaplains). Participants reported challenges in engaging patients/families about end-of-life care preferences. Preferences for intensive treatment or full-code status presented an ethical dilemma for some participants. Participants described strategies to navigate such preferences, including educating about treatment options, and expressed diverse reactions, including accepting or attempting to shift enrollee preferences.
Discussion: This study illuminates a rarely studied aspect of hospice care: how hospice staff engage with enrollees choosing full code and/or intensive treatments. Such patient preferences can produce ethical dilemmas for hospice staff. Enhanced communication training and guidelines, updated organizational and federal policies, and ethics consult services may mitigate these dilemmas.
End-of-life care of critically ill adult patients with advanced or incurable cancers is imbued with major ethical challenges. Oncologists, hospitalists, and intensivists can inadvertently subjugate themselves to the perceived powers of autonomous patients. Therapeutic illusion and poor insight by surrogates in physicians' ability to offer accurate prognosis, missed opportunities and miscommunication by clinicians, and lack of systematic or protocolized approach represent important barriers to high-quality palliative care. Enhanced collaboration, models that allow clinicians and surrogates to share the burdens of decision, and institutional support for early integration of palliative care can foster an ethical climate.
La prévention des risques sanitaires liés à la dépouille écrase presque toute autre considération. L’organisation des obsèques n’est pas réellement prise en compte par le législateur, laissée au bon vouloir des officiants : est-ce acceptable, en période de pandémie, quand les risques sont multipliés et que la mort est omniprésente, pas seulement celle du défunt, mais aussi celle d’une société prise en défaut ? Seule une approche éthique permet de relever le défi de funérailles plus responsables.
Spirituality could be understood as a personal belief, a relation with sacred, divine experience, a sense of purpose and meaning towards life, authenticity and connectedness. It is a continually evolving, highly complex, contextual, subjective, and sensitive construct. A continuous development is seen around understanding about spirituality and spiritual concepts, such as spiritual experiences, spiritual pain and spiritual distress, especially among patients and families at the end of life. The concepts, values, attitudes, and beliefs around spirituality, spiritual needs and expressions vary among different individuals, cultures, and religions. There is a dearth of literature around spirituality, especially among Muslim patients and families at the end of life. The complexities around the concept of spirituality in the literature raise several ethical and methodological concerns for a novice researcher while planning and conducting a study on spirituality during end-of-life care in a hospice setting, especially among a Muslim population. This paper aims to share some of the methodological and ethical challenges that can be faced by qualitative researchers while conducting research around spirituality and end-of-life care in an Islamic/Muslim context. Major challenges include defining the term spirituality, spirituality and culture, communication, power relations, language and translation, recruitment and selection of the participants, emotional distress, and reflexivity and reciprocity. Having an in-depth understanding of these challenges can guide researchers to address these issues adequately in their spirituality research in a Muslim context.
Deep brain stimulation (DBS) is an implanted neurological device effective in treating motor symptoms of Parkinson disease (PD), such as tremor, rigidity, and bradykinesia. More than 150,000 patients worldwide have been implanted DBS, including its continued benefit or potential complications, yet, no published articles provide guidance for hospice providers regarding the management of DBS devices in end-of-life care. With contributions from hospice physicians, a neurosurgeon, and ethicists, this article provides recommendations to adress clinical and ethical challenges in optimizing DBS for patients with PD nearing the end of life.
Les éditeurs de la revue Etudes ont compilé une série d'articles publiés entre 2005 et 2011 sur la notion de "prendre soin" :
-Introduction d'Agatha Zielinski : Que signifie "prendre soin" ?
-Pour une médecine de l'incurable, Céline Lefève et Jean-Christophe Mino (Juin 2008)
-Violence de la maladie, entretien avec Claire Marin (Juillet 2008)
-Former de vrais thérapeutes, Jean-Christophe Mino, Marie-Odile Frattini, Emmanuel Fournier (Février 2011)
-L'éthique du Care, une nouvelle façon de prendre soin, Agatha Zielinski (décembre 2010)
-Postface de Patrick Verspieren, "Le pacte de soin" à partir de l'article "Malade et médecin partenaires" (Janvier 2005)
Cet ouvrage se compose d'une cinquantaine de fiches thématiques sur les soins palliatifs afin d'accompagner de façon expérimentée la fin de vie des patients : les principes éthiques, les acteurs, le temps, les moyens, l'expérience pour le patient et pour les équipes, les dispositifs singuliers, entre autres.
Assisted dying practices, which include euthanasia and physician-assisted suicide (PAS), have expanded significantly around the world over the past 20 years. Euthanasia refers to the act of intentionally ending the life of a patient by a health care practitioner through medical means at that patient's explicit request while PAS involves the provision or prescribing of drugs by a health care practitioner for a patient to end their own life. The growing global aging population accompanied by higher levels of chronic disease and protracted illnesses have sharpened the focus on end of life issues and societal and legislative debates continue to address related moral and ethical complexities. Assisted dying practices are now legal in 18 jurisdictions, increasing the number of people with access to euthanasia and/or physician-assisted suicide (PAS) to over 200 million. New legislation is being crafted or considered in Portugal, Spain and 16 US states. Germany has recently overturned a ban on assisted dying services and New Zealand will put legalization of euthanasia to a vote in 2020. Assisted dying practice characteristics differ and there is also considerable variation in the terminology and labels used for assisted dying, which can add to the confusion and controversy around the practices. Frequency of use also varies greatly by jurisdiction, though a consistent increase has been seen in European countries including Belgium, the Netherlands and Switzerland as well as some jurisdictions with long-standing physician assisted dying laws, such as Oregon and Washington. All assisted dying legislation includes substantive and procedural requirements, such as minimum age, waiting period, health condition, physician consultation and reporting procedure, however, some are extensive and detailed while others are more limited. As access to assisted dying expands in new and existing jurisdictions, research must also expand to diligently examine the impact on patients, specifically among vulnerable populations, as well as on health care practitioners, health care systems and communities. This article will provide a thorough investigation, or 'status quaestionis' of the terminology, evolution and current legislative picture of assisted dying practices around the globe and contribute to the ongoing ethical, regulatory and practice debate, which have become increasingly important considerations for medical practice, end-of-life care and public health.
Presented here for analysis are distinct and opposed Buddhist perspectives on the issue of withdrawing life support from a brain-dead individual. Of the four views considered, Peter Harvey argues that withdrawal of care and cessation of treatment is justifiable in a Buddhist context. Another perspective (Scott Stonington and Pinit Ratanakul) points out that the Buddhist physician who withdraws a respirator acquires a karmic demerit that can negatively affect this life and future lives. This second view then concludes that Western bioethical resources are inadequate to address the problem of withdrawal of care. In light of these opposing ethical stances grounded in sectarian viewpoints, this presentation will argue that religious ethics should not be considered “irrational” due to their religious foundations. Furthermore, importing local religious concepts can be deemed morally justifiable if doing so endorses the “moral point of view” in its appeal to universalizability, impartial justice, beneficence, and adherence to a set of normative principles. Can ethics criticize religious views that do not conform to the moral point of view or that seem scientifically uninformed, irrational, sectarian, or in some cases even fanatical ? Even though Western concepts for bioethical analysis should not be accepted uncritically, appeal to the moral point of view is necessary for resolving moral problems even if specifics of that perspective may be backgrounded in non-Western contexts.
The world is contending to contain the outbreak of coronavirus which has now resulted to 36,571 mortalities out of the 754,948 confirmed cases in 202 countries, areas or territories as at March 31, 2020. Pandemics are usually characterized by a sense of panic and uncertainties. Even though global preparedness and emergency procedures have been enacted, the uncertainties surrounding this pandemic raise considerable questions to their adherence. Widespread restrictions of varying degrees have been placed on individuals, groups, communities, cities or even whole regions. These restrictions ab initio are in contradiction to civil and human rights. These measures, which are now widely implemented in many regions and countries of the globe, have thrown up fresh ethical questions. Between human health and human rights, which takes primacy?
BACKGROUND: The COVID-19 pandemic has aggressively reached the most vulnerable, not only the elderly but also patients with chronic conditions such as cancer. In this study, we present the outlines of ethical thinking and the measures implemented to try to respect our basic values of care, in the specific environment of an oncology hospital.
METHODS: Our ethics committee created an ethical watch system based on 24/7 shifts to assist practitioners in their daily decisions. We discuss the challenges faced by patients with cancer during the pandemic, such as access to critical care and ethical dilemmas in the context of resource scarcity, as well as the issue of isolation of patients. We also debate the restrictions in access to oncology care in a health context strongly 'prioritised' against COVID-19.
RESULTS: In all areas of an ethical dilemma, either for sorting out access to critical care or for the dramatic consequences of prolonged isolation of patients, our common thread was our attempt to protect, whenever possible, the principles of deontological ethics by strictly resisting utilitarian pressure. Respecting democratic health decision-making processes is a cornerstone of ethically relevant decisions, including in the context of a sanitary crisis.
CONCLUSION: The role of an ethics committee related to real-life situations includes not only a reflexive perspective in respect of fundamental principles, but also the help to enlighten and resolve ethical dilemmas in complex clinical situations. This ethical watch team assists physicians in decision-making, promoting the supportive and palliative dimension of care with a holistic approach.
Background: Involving adults lacking capacity (ALC) in research on end of life care (EoLC) or serious illness is important, but often omitted. We aimed to develop evidence-based guidance on how best to include individuals with impaired capacity nearing the end of life in research, by identifying the challenges and solutions for processes of consent across the capacity spectrum.
Methods: Methods Of Researching End of Life Care_Capacity (MORECare_C) furthers the MORECare statement on research evaluating EoLC. We used simultaneous methods of systematic review and transparent expert consultation (TEC). The systematic review involved four electronic databases searches. The eligibility criteria identified studies involving adults with serious illness and impaired capacity, and methods for recruitment in research, implementing the research methods, and exploring public attitudes. The TEC involved stakeholder consultation to discuss and generate recommendations, and a Delphi survey and an expert ‘think-tank’ to explore consensus. We narratively synthesised the literature mapping processes of consent with recruitment outcomes, solutions, and challenges. We explored recommendation consensus using descriptive statistics. Synthesis of all the findings informed the guidance statement.
Results: Of the 5539 articles identified, 91 met eligibility. The studies encompassed people with dementia (27%) and in palliative care (18%). Seventy-five percent used observational designs. Studies on research methods (37 studies) focused on processes of proxy decision-making, advance consent, and deferred consent. Studies implementing research methods (30 studies) demonstrated the role of family members as both proxy decision-makers and supporting decision-making for the person with impaired capacity. The TEC involved 43 participants who generated 29 recommendations, with consensus that indicated. Key areas were the timeliness of the consent process and maximising an individual’s decisional capacity. The think-tank (n = 19) refined equivocal recommendations including supporting proxy decision-makers, training practitioners, and incorporating legislative frameworks.
Conclusions: The MORECare_C statement details 20 solutions to recruit ALC nearing the EoL in research. The statement provides much needed guidance to enrol individuals with serious illness in research. Key is involving family members early and designing study procedures to accommodate variable and changeable levels of capacity. The statement demonstrates the ethical imperative and processes of recruiting adults across the capacity spectrum in varying populations and settings.
BACKGROUND: In cancer care, do not resuscitate (DNR) orders are common in the terminal phase of the illness, which implies that the responsible physician in advance decides that in case of a cardiac arrest neither basic nor advanced Coronary Pulmonary Rescue should be performed. Swedish regulations prescribe that DNR decisions should be made by the responsible physician, preferably in co-operation with members of the team. If possible, the patient should consent, and significant others should be informed of the decision. Previous studies have shown that physicians and nurses can experience ethical dilemmas in relation to DNR decisions, but knowledge about what ethical reasoning they perform is lacking. Therefore, the aim was to describe and explore what ethical reasoning physicians and nurses apply in relation to DNR-decisions in oncology and hematology care.
METHODS: A qualitative, descriptive and explorative design was used, based on 287 free-text comments in a study-specific questionnaire, answered by 216 physicians and nurses working in 16 oncology and hematology wards in Sweden. Comments were given by 89 participants.
RESULTS: The participants applied a situation-based ethical reasoning in relation to DNR-decisions. The reasons given for this were both deontological and utilitarian in kind. Also, expressions of care ethics were found in the material. Universal rules or guidelines were seen as problematic. Concerning the importance of the subject, nurses to a higher extent underlined the importance of discussing DNR-situations, while physicians described DNR-decisions as over-investigated and not such a big issue in their daily work.
CONCLUSION: The study revealed that DNR-decisions in oncology and hematology care gave rise to ethical considerations. Important ethical values described by the participants were to avoid doing harm and to secure a peaceful and "natural" death with dignity for their dying patients. A preference for the expression "allow for natural death" instead of the traditional term "do not resuscitate" was found in the material.
Objectif : Cette étude vise à développer des axes de réflexion concernant la fin de vie et ainsi mieux comprendre les facteurs éthique et émotionnel en jeu dans la prise de décision chez le médecin travaillant en soins palliatifs et plus particulièrement dans une situation où il est question d’une limitation et/ou arrêt de traitement (LAT).
Méthode: La réflexion éthique et le vécu émotionnel de 10 médecins, exerçant en services ou en équipes mobiles de soins palliatifs dans la région Auvergne-Rhône-Alpes, ont été évalués par auto-questionnaire.
Résultats: Dans un contexte de prise de décision de LAT, les médecins ont estimé que la réflexion éthique a un impact sur leur prise de décision dans leur pratique professionnelle en général mais également dans leur dernière situation de LAT. Les résultats diffèrent concernant le vécu émotionnel, 80 % des médecins ont pensé que le vécu émotionnel jouait un rôle dans leur pratique professionnelle générale. En revanche, 70 % des médecins considèrent que leur vécu émotionnel n’a pas influencé la prise de décision lorsqu’ils sont interrogés plus spécifiquement sur la dernière situation clinique où il était question d’une LAT.
Conclusion : Les médecins considèrent que la réflexion éthique est bien présente et semble indispensable pour garder, au centre de la décision, le patient dans son unicité. Au vu des résultats, la prise de décision de LAT semble faire ressentir des émotions fortes à ces médecins qui paraissent difficilement identifiables et exprimables.
Context: In most jurisdictions where medical-aid-in-dying (MAiD) is available, this option is reserved for individuals suffering from incurable physical conditions. Currently, in Canada, people who have a mental illness are legally excluded from accessing MAiD.
Methods: We developed a questionnaire for mental health care providers to better understand their perspectives related to ethical issues in relation to MAiD in the context of severe and persistent suffering caused by mental illness. We used a mixed-methods survey approach, using a concurrent embedded model with both closed and open-ended questions.
Findings: 477 healthcare providers from the province of Québec (Canada) completed the questionnaire. One third of the sample (34.4%) were nurses, one quarter psychologists (24.3%) and one quarter psycho-educators (24%). Nearly half of the respondents (48.4%) considered that people with a severe mental illness should be granted the right to opt for MAiD as a way to end their suffering. Respondents were more likely to feel comfortable listening to the person and participating in discussions related to MAiD for a mental illness than offering care or the means for the person to access MAiD. Most (86.2%) reported that they had not received adequate/sufficient training, education or preparation in order to address ethical questions surrounding MAiD.
Conclusions: The findings highlight how extending MAiD to people with a mental illness would affect daily practices for mental healthcare providers who work directly with people who may request MAiD. The survey results also reinforce the need for adequate training and professional education in this complex area of care.
Key ethical challenges for healthcare workers arising from the COVID-19 pandemic are identified: isolation and social distancing, duty of care and fair access to treatment. The paper argues for a relational approach to ethics which includes solidarity, relational autonomy, duty, equity, trust and reciprocity as core values. The needs of the poor and socially disadvantaged are highlighted. Relational autonomy and solidarity are explored in relation to isolation and social distancing. Reciprocity is discussed with reference to healthcare workers' duty of care and its limits. Priority setting and access to treatment raise ethical issues of utility and equity. Difficult ethical dilemmas around triage, do not resuscitate decisions, and withholding and withdrawing treatment are discussed in the light of recently published guidelines. The paper concludes with the hope for a wider discussion of relational ethics and a glimpse of a future after the pandemic has subsided.
Les soins palliatifs demandent de plus en plus de compétences médicales, soignantes, humaines et éthiques, afin d’asseoir leur légitimité dans des domaines de plus en plus pointus de la médecine – réanimation, néonatalogie, cancérologie, gériatrie – ainsi que dans la diversité des prises en charge, y compris au domicile ou en EPHAD.
Dans ce contexte de développement des formations et d’élargissement des champs de compétences de la pratique palliative, cette 5e édition du manuel offre :
-les indispensables connaissances thérapeutiques ;
-les outils, à destination des professionnels en vue d’acquérir une compétence clinique pour la rencontre et l’accompagnement humain, psychique et relationnelle de la personne malade ;
-une contextualisation de la pratique des soins palliatifs dans leur dimension sociale, sanitaire et politique ;
-des jalons pédagogiques pour le développement des soins palliatifs dans leur dimension pédagogique et de recherche.
Cette réédition totalement revue et enrichie contribue à une appropriation des évolutions législatives portées par la loi du 2 février 2016 créant de nouveaux droits en faveur des malades et des personnes en fin de vie (droits de la personne, sédation profonde et continue, souffrance, directives anticipées opposables, etc.). Les conditions du mourir interrogent à la fois nos obligations sociales et les exigences du soin. Alors que s'instaurent une nouvelle culture de la fin de vie, de nouvelles solidarités, quelles seront les incidences sur les pratiques professionnelles au service de la personne malade et de ses proches ? Ces situations toujours singulières, irréductibles aux débats généraux portant sur "la mort dans la dignité" justifient une exigence de clarification, la restitution d’expériences et la transmission de savoirs vrais.
Dans une approche pluridisciplinaire, cet ouvrage associe les meilleures compétences pour proposer une synthèse rigoureuse et complète des réflexions et des expériences au cœur des débats les plus délicats de notre société. Il constitue une indispensable référence à destination des professionnels mais tout autant d'un large public, la concertation nationale sur la fin de vie ayant fait apparaître un important besoin d'informations dans ces domaines à la fois intimes et publics.