When the natural oral intake of food and liquids is disturbed the role of caregivers is to assist the patient in order to cover the individual's need for nutrition by nutrition therapy. Nutrition therapy is a medical intervention, which requires an indication for achieving a treatment goal and the informed consent of the competent patient. Withholding and withdrawing nutrition therapy and artificial hydration must be evaluated in specific situations (terminally ill, palliative care, dementia, aged patients) and always case by case according to the patients' cultural and spiritual needs. In the case of ethical issues or dilemmas, application of the four principles of autonomy, beneficence, non-maleficence, and justice is recommended. These principles assist the caregiver in the decision as whether to feed or not to feed. Caregivers must emphasize the right to self-determination and thus to respect the autonomy of the patient, and also the particular vulnerability of the patient suffering from or at risk of malnutrition. Caregivers must be ethically capable of responding to the nutritional needs according to the patient's will and desires even if the patient is not capable of self-determination, always looking for the best benefit to the patient and avoiding harm.
A l’heure où les techniques médicales prolongent la vie en questionnant sur sa qualité et où l’idéal de liberté et d’autonomie individuelles se heurte aux logiques de contrôle politique et médical de la vie, la question de l’aide à mourir prend une place centrale dans les débats sur la fin de vie. La Belgique, qui depuis plus de 17 ans bénéficie d’une loi de dépénalisation de l’euthanasie, constitue un observatoire privilégié pour comprendre les enjeux de cette pratique et permet plus largement de questionner une certaine construction de la bonne mort en lien avec les problématiques que révèle l’avancée en âge. Quelles sont les relations entre le grand âge et la pratique de l’euthanasie ? Les personnes âgées en sont-elles des usagers comme les autres ? Que nous disent les parcours euthanasiques sur ce qui, dans le grand âge, constitue un invivable ? Les données récoltées lors d’une enquête ethnographique menée à Bruxelles auprès des différents acteurs de la pratique de l’euthanasie mettent en lumière la manière dont ce processus s’inscrit dans des logiques sociales où s’articulent les notions d’autonomie et de dignité, de dépendance interpersonnelle et de liberté individuelle. Examiner le recours à l’aide à mourir dans le grand âge nous amène à explorer une fabrique contemporaine de la bonne mort et à dessiner les contours de ce qui, dans les sociétés occidentales, balise aujourd’hui la vie bonne.
Certaines hospitalisations de personnes âgées sont qualifiées de « non pertinentes » parce qu’elles y reçoivent une prise en charge médicale, paramédicale et sociale qui pourrait être rendue à domicile ou dans des structures plus efficientes et mieux adaptées à leurs besoins ou à leurs situations. L’étude PAGE a pour objectif de comprendre les raisons des hospitalisations non pertinentes des personnes âgées ayant des troubles cognitifs légers à modérés et de décrire les conséquences sur la fin de leur vie. Comment penser, anticiper et adapter leurs besoins en aide et en soins relatifs à cette période de vie selon leurs souhaits ? 17 entretiens individuels semi-directifs ont été effectués auprès de personnes âgées, leur entourage personnel (n = 8) et professionnel (n = 14). Pour explorer leurs trajectoires, les entretiens ont été réalisés à leur entrée à l’hôpital puis renouvelés à chaque étape de leur parcours durant 6 mois. Les hospitalisations non pertinentes cristallisent la dénégation de la perte d’autonomie fonctionnelle. Alors que les personnes vivent des pertes, les discussions et prises de décisions pérennes quant à leur choix de fin de leur vie sont repoussées. Les hospitalisations non pertinentes surviennent lorsque ce quotidien n’est plus adapté et obligent l’entourage ou la personne âgée à prendre des décisions urgentes et contraires à leurs souhaits et besoins.
The aim of this article is to analyze how dignity and vulnerability, as declared principles of bioethics, both can be seen in a new light when they are thought of together, in their intertwining, in order to outline a proposal for an analytical framework for end-of-life care. It is thus shown, on the one hand, that the demand for respect for the equal dignity of every person, linked by the different anthropological and ethical theories to their autonomy as a rational agent, also refers to their fragile, vulnerable, and interdependent character, as an embodied subjectivity, sustained by a complex web of care. On the other hand, the vulnerability of these selves as others, constituted by the radical appeal of everything that affects them socially, emotionally, sensitively, and by their need for recognition and attention, would be pathological if it did not include the impulse towards autonomy, which, although precarious and connotative, requires dignified and equitable treatment. This intertwining of both principles points to a phenomenological conception of the person as a corporeal social existence, from which a number of studies on the attention to dignity and vulnerability at the end of life are analyzed.
In 2002, the Dutch Euthanasia Act was put in place to regulate the ending of one's life, permitting a physician to provide assistance in dying to a patient whose suffering the physician assesses as unbearable. Currently, a debate in the Netherlands concerns whether healthy (older) people who value their life as completed should have access to assistance in dying based on their autonomous decision making. Although in European law a right to self-determination ensues from everyone's right to private life, the Dutch Supreme Court recently adopted a position on whether the Dutch Euthanasia Act lacks adequate attention to a patient's autonomous decision making. Specifically, in the Albert Heringa case, the Court ruled that the patient-physician relationship as understood in the Dutch Euthanasia Act limits this plea for more self-determination. This ethical analysis of the Heringa case examines how the Supreme Court's understanding of the Euthanasia Act defines patient autonomy within a reciprocal patient-physician relationship.
Medicalisation is a pervasive feature of contemporary end of life and dying in Western Europe and North America. In this article, we focus on the relationship between two specific aspects of the medicalisation of dying: deep continuous palliative sedation until death and assisted dying. We draw upon a qualitative interview study with 29 health professionals from three jurisdictions where assisted dying is lawful: Flanders, Belgium; Oregon, USA; and Quebec, Canada. Our findings demonstrate that the relationship between palliative sedation and assisted dying is often perceived as fluid and complex. This is inconsistent with current laws as well as with ethical and clinical guidelines according to which the two are categorically distinct. The article contributes to the literature examining health professionals' opinions and experiences. Moreover, our findings inform a discussion about emergent themes: suffering, timing, autonomy and control - which appear central in the wider discourse in which both palliative sedation and assisted dying are situated, and which in turn relate to the wider ideas about what constitutes a 'good death'.
In 2002, the Dutch Euthanasia Act was put in place to regulate the ending of one's life, permitting a physician to provide assistance in dying to a patient whose suffering the physician assesses as unbearable. Currently, a debate in the Netherlands concerns whether healthy (older) people who value their life as completed should have access to assistance in dying based on their autonomous decision making. Although in European law a right to self-determination ensues from everyone's right to private life, the Dutch Supreme Court recently adopted a position on whether the Dutch Euthanasia Act lacks adequate attention to a patient's autonomous decision making. Specifically, in the Albert Heringa case, the Court ruled that the patient-physician relationship as understood in the Dutch Euthanasia Act limits this plea for more self-determination. This ethical analysis of the Heringa case examines how the Supreme Court's understanding of the Euthanasia Act defines patient autonomy within a reciprocal patient-physician relationship.
This paper explores the concept of the completed life outlined in recent writing in the Netherlands on euthanasia and assisted suicide and its implications for ageing studies. Central to this theme is the basic right of people to self-determine the length of their later life, linked with the subsidiary right to assistance in achieving such self-determination. Although the notion of weariness with life has a long history, the recent advocacy of a self-limited life seems shaped by the new social movements presaged upon individual rights together with what might be called a distinctly third-age habitus, giving centre stage to autonomy over the nature and extent of a desired later life, including choice over the manner and timing of a person's ending. In exploring this concept, consideration is given to the notion of a ‘right to die’, ‘rational suicide’ and the inclusion of death as a lifestyle choice. While reservations are noted over the unequivocal good attached to such self-determination, including the limits to freedom imposed by the duty to avoid hurt to society, the article concludes by seeing the notion of a completed life as a challenge to traditional ideas about later life.
Background: End-of-life decisions are highly complex socio-normative and ethical phenomena. The goal of this study was to provide an assessment of public opinions in Israel concerning aspects of end-of-life decisions.
Methods: An online cross sectional study was performed in February 2020. The primary tool including items pertaining to death assistance and truth telling to patients. A sample of 515 participants representative of the adult Israeli population was obtained.
Results: The majority of participants (71%) supports telling the entire truth to patients even in harsh conditions. Support for truth telling decreases with affiliation to religion, with as little as 40% support among ultra-orthodox. People with vocational education are the least supportive of truth telling. Concerning doctor assisted death, almost half (49%) of the sample were supportive. Opposition is positively associated with religiosity, with 90% of ultra-orthodox and 58% of religious participants opposing doctor-assisted death, compared to only 18% among seculars. Non-Jews were 3.35 times (95%CI: 1.90, 5.91) more likely to oppose doctor assisted death than Jews (p < .0001). An Interrelationship analysis crossing between attitudes revealed that the largest group (39%) was comprised of participants who support both (“autonomists”).
Conclusions: Israelis are overwhelmingly supportive of truth telling to patients. In contrast, Israeli public opinions on doctor assisted death are divided. For both attitudes, religiousness plays a crucial role as a catalyst for conservatism and opposition to change. Almost a half of the public is also supportive of an autonomist approach that would allow patients to decide on ending their own lives.
Patients with disorders of consciousness after severe brain injury need surrogate decision makers to guide treatment decisions on their behalf. Formal guidelines for surrogate decisionmaking generally instruct decision makers to first appeal to a patient's written advance directive, followed by making a substituted judgment of what the patient would have chosen, and lastly, to make decisions according to what seems to be in the patient's best medical interests. Substituted judgment is preferable because it is taken to preserve patient autonomy, by using a patient's past wishes and values to reconstruct what they would have chosen for themselves. In this paper, the author argues that for a certain population of patients, the standard interpretation of substituted judgment cannot ensure the preservation of patient autonomy. Patients with "covert awareness" may continue to have values and an authentic sense of self, which may differ from their past values and wishes. Accordingly, surrogate decision makers should make decisions based on how the patient is likely to experience their condition in the present, rather than their past wishes and values.
As they age, many people are afraid that they might become a burden to their families and friends. In fact, fear of being a burden is one of the most frequently cited reasons for individuals who request physician aid in dying. Why is this fear so prevalent, and what are the issues underlying this concern? I argue that perceptions of individual autonomy, dependency, and dignity all contribute to the fear of becoming a burden. However, this fear is misplaced; common conceptions of these values should be re-framed and re-examined. Practices that support a more community-centered type of autonomy can be found in dependency and dignity. This paper offers some practical examples of how to address common end-of-life situations that may cause anxiety to patients who are worried about being a burden. These practices include discussing expectations, both for care and how the relationship among the participants might change, and modeling respectful caregiving behaviors. Most difficult of all, though, includes cultural and societal attitude changes so that people recognize the good in receiving care and get used to the idea that they do not need to do anything to be valuable.
Ageing has been recognized as one of the most critically important health-care issues worldwide. It is relevant to Asia, where the increasing number of older populations has drawn attention to the paramount need for health-care investment, particularly in end-of-life care. The advocacy of advance care planning is a mean to honor patient autonomy. Since most East Asian countries are influenced by Confucianism and the concept of 'filial piety,' patient autonomy is consequently subordinate to family values and physician authority. The dominance from family members and physicians during a patient's end-of-life decision-making is recognized as a cultural feature in Asia. Physicians often disclose the patient's poor prognosis and corresponding treatment options to the male, family member rather to the patient him/herself. In order to address this ethical and practical dilemma, the concept of 'relational autonomy' and the collectivism paradigm might be ideally used to assist Asian people, especially older adults, to share their preferences on future care and decision-making on certain clinical situations with their families and important others. In this review article, we invited experts in end-of-life care from Hong Kong, Indonesia, Japan, South Korea, Singapore and Taiwan to briefly report the current status of advance care planning in each country from policy, legal and clinical perspectives. According to the Asian experiences, we have seen different models of advance care planning implementation. The Asian Delphi Taskforce for advance care planning is currently undertaken by six Asian countries and a more detailed, culturally sensitive whitepaper will be published in the near future.
OBJECTIVE: to understand the meanings attributed by nurses about conditions that interfere in defending of the elderly's autonomy on the terminality of life in the context of hospitalization.
METHOD: qualitative and exploratory study, which applied the Grounded Theory. Data were collected between November 2016 and May 2017, in the internal medicine wards of a hospital in Rio de Janeiro, Brazil, through non-participant observation and semi-structured interviews. Three sample groups composed of ten nurses, eight doctors, and 15 nursing technicians were investigated.
RESULTS: the conditions are related to the medical power, subordination of nurses, family influences; the functional decline of the elderly; and biomedical model. Final considerations: the elderly's autonomy is veiled and violated since their abilities are subjugated, and the family's will and professional paternalism may prevail. However, this right must guide contemporary care models and integrate palliative 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.
BACKGROUND: Respect for autonomy is a paramount principle in end-of-life ethics. Nevertheless, empirical studies show that decision-making, exclusively focused on the individual exercise of autonomy fails to align well with patients' preferences at the end of life. The need for a more contextualized approach that meets real-life complexities experienced in end-of-life practices has been repeatedly advocated. In this regard, the notion of 'relational autonomy' may be a suitable alternative approach. Relational autonomy has even been advanced as a foundational notion of palliative care, shared decision-making, and advance-care planning. However, relational autonomy in end-of-life care is far from being clearly conceptualized or practically operationalized.
MAIN BODY: Here, we develop a relational account of autonomy in end-of-life care, one based on a dialogue between lived reality and conceptual thinking. We first show that the complexities of autonomy as experienced by patients and caregivers in end-of-life practices are inadequately acknowledged. Second, we critically reflect on how engaging a notion of relational autonomy can be an adequate answer to addressing these complexities. Our proposal brings into dialogue different ethical perspectives and incorporates multidimensional, socially embedded, scalar, and temporal aspects of relational theories of autonomy. We start our reflection with a case in end-of-life care, which we use as an illustration throughout our analysis.
CONCLUSION: This article develops a relational account of autonomy, which responds to major shortcomings uncovered in the mainstream interpretation of this principle and which can be applied to end-of-life care practices.
BACKGROUND: The Cancer Home-Life Intervention showed no significant effects, and examination of the processes affecting or inhibiting outcomes is relevant.
AIM: To evaluate the Cancer Home-Life Intervention for its processes of implementation, mechanisms of impact and contextual factors.
DESIGN: Process evaluation conducted alongside the randomised controlled trial, using quantitative and qualitative methods (ClinicalTrials.gov NCT02356627). The Cancer Home-Life Intervention is a tailored, occupational therapy-based programme.
SETTING/PARTICIPANTS: This study took place in participants' homes and at hospital. A total of 113 home-dwelling adults (>=18 years) with advanced cancer who had received the Cancer Home-Life Intervention were included, together with five intervention-therapists.
RESULTS: All 113 participants (100%) received a first home visit; 32 participants (26%) received a second visit; and 4 participants (3%) received a third visit. Median number of delivered intervention components were 3 (interquartile range: 2; 4). Identified barriers for effect included unclear decision process for intervention dosage; participants' low expectations; participants' lack of energy; and insufficient time to adopt new strategies. The trial design constituted a barrier as the intervention could only be provided within a specific short period of time and not when relevant. Intervention components working to solve practical everyday problems, enhance enjoyment and increase a sense of safety were perceived as useful.
CONCLUSION: Future interventions can benefit from inclusion criteria closely related to the intervention focus and clear procedures for when to continue, follow-up and terminate intervention. Decisions about dose and timing may benefit from learning theory by taking into account the time and practice needed to acquire new skills.