This article is an examination of the doctor–woman patient encounter through a vulnerability lens. This relationship has been traditionally been critiqued as a paternalistic encounter in which the...

Patient-and-family-centered care (PFCC) is critical in end-of-life (EOL) settings. PFCC serves to develop and implement patient care plans within the context of unique family situations. Key components of PFCC include collaboration and communication among patients, family members and healthcare professionals (HCP). Ethical challenges arise when the burdens (e.g., economic, psychosocial, physical) of family members and significant others do not align with patients’ wishes. This study aims to describe the concept of vulnerability and the ethical challenges faced by HCPs in these (...) circumstances. Further, it assesses the contribution of clinical ethics consultation (CEC) in assisting HCPs to face these difficult ethical conundrums. Two clinical cases are analyzed using the Circle Method of CEC. The first regards the difficulty faced by the doctor in justifying treatments previously agreed upon between the patient and his/her friends. The second regards the patient’s concern about being a burden on their family. Family burdens in EOL settings challenge PFCC in that patient autonomy may be disregarded. This compromises shared decision-making between the patient, family and HCPs as a core component of PFCC. In their ability to promote a collaborative approach, CECs may assist in the successful implementation of PFCC. (shrink)

Zusammenfassung Alte Menschen mit lebensbegleitender geistiger Behinderung weisen wiederkehrend auch gesundheitliche Problemstellungen auf, die eine stationäre akutklinische Behandlung erfordern. Gesundheitliche Belastungen sind bei dieser Personengruppe nicht ausschließlich auf die Behinderung, sondern auch auf eine höhere Vulnerabilität zurückzuführen, die sich durch degenerativ-altersassoziierte Problemstellungen weiter verstärkt. Gesundheitliche Belastungen treten bei dieser Gruppe mitunter auch als Folge lebenslanger gesundheitlicher Benachteiligung und Unterversorgung auf. Im Vergleich zu Menschen ohne Behinderung bekommen Menschen mit lebensbegleitender geistiger Behinderung vielfach weder die nach ihren höheren und spezifischen Bedarfen (...) _angemessenen _noch die _gleichen _Gesundheitsleistungen. Eine diskriminierende Ungleichbehandlung von Menschen mit (geistiger) Behinderung gegenüber Menschen ohne Behinderung drückt sich häufig auch in der Verletzung der Integrität und Würde dieser besonders vulnerablen Patient*innengruppe aus. Strukturelle sowie haltungs- und handlungsbezogene Diskriminierungspraktiken im Akutkrankenhaus können dazu beitragen, bestehende Vulnerabilitäten zu erhöhen und gesundheitliche Problemstellungen zu verschärfen. Ziel des Beitrages ist es, für diese Wechselwirkungen zu sensibilisieren und relevante Eckpunkte für eine würdevolle und integritätswahrende, am Gegenüber ausgerichtete Pflege im Akutkrankenhaus aufzuzeigen. (shrink)

BackgroundThe expressions of a “wish to hasten death” or “wish to die” raise ethical concerns and challenges. These expressions are related to ethical principles intertwined within the field of medical ethics, particularly in end-of-life care. Although some reviews were conducted about this topic, none of them provides an in-depth analysis of the meanings behind the “wish to hasten death/die” based specifically on the ethical principles of autonomy, dignity, and vulnerability. The aim of this review is to understand if and how (...) the meanings behind the “wish to hasten death/die” relate to and are interpreted in light of ethical principles in palliative care.MethodsWe conducted a meta-ethnographic review according to the PRISMA guidelines and aligned with Noblit and Hare’s framework. Searches were performed in three databases, Web of Science, PubMed, CINAHL, with no time restrictions. Original qualitative studies exploring the meanings given by patients, family caregivers and healthcare professionals in any context of palliative and end-of-life care were included. A narrative synthesis was undertaken. PROSPERO registration CRD42023360330.ResultsOut of 893 retrieved articles, 26 were included in the analysis, accounting for the meanings of a total of 2,398 participants. Several factors and meanings associated with the “wish to hasten death” and/or “wish to die” were identified and are mainly of a psychosocial and spiritual nature. The ethical principles of autonomy and dignity were the ones mostly associated with the “wish to hasten death”. Ethical principles were essentially inferred from the content of included articles, although not explicitly stated as bioethical principles.ConclusionsThis meta-ethnographic review shows a reduced number of qualitative studies on the “wish to hasten death” and/or “wish to die” explicitly stating ethical principles. This suggests a lack of bioethical reflection and reasoning in the empirical end-of-life literature and a lack of embedded ethics in clinical practice. There is a need for healthcare professionals to address these topics compassionately and ethically, taking into account the unique perspectives of patients and family members. More qualitative studies on the meanings behind a wish to hasten death, their ethical contours, ethical reasoning, and implications for clinical practice are needed. (shrink)