Ethics in palliative care: conceptions about the end (original) (raw)
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Vulnerable Dignity, Dignified Vulnerability: Intertwining of Ethical Principles in End-of-Life Care
International Journal of Environmental Research and Public Health, 2021
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...
While a number of studies have focused on the palliative care ideal of dying with dignity, less attention has been given to the factors that are likely to influence the experience of dignity at the end of life. What has been neglected in these studies is the impact that the inability to act independently has upon a terminally ill patient's sense of dignity. The present study aims to understand the ways in which the dignity of terminally ill patients is affected when they lose their ability to act as autonomous agents. Participant observation was conducted over a ten-month period in two Portuguese palliative care units for cancer and non-cancer patients, to complement interviewing techniques. A total of ten palliative care patients were interviewed for research purposes. Interviews were also conducted with twenty family members and twenty palliative care professionals. The preliminary results of this ongoing doctoral research will be presented.
Terminal care: philosophical reflection from ethical and moral perspectives
Escola Anna Nery
Objective To reflect on the care practice for patients with a terminal illness from ethical and moral perspectives. Method This is a theoretical-reflective study carried out from the critical analysis of philosophical texts on ethics and morals in the context of human moral development and health practices. Results At the time of Greek philosophers, ethics was based on the search for happiness. However, with the advent of Christianity, this came to be seen as a duty. According to Kant, ethics and morals are duties as well — a categorical imperative — and the life maintenance issue must be pursued, opening space for the occurrence of dysthanasia practices. From Hans Jonas’ point of view, otherwise, health professionals must consider the quality of life of the patient over their life span, introducing concepts of palliative care. Conclusion and implications for the practice The above-mentioned concepts changed over time, and knowing them is necessary for critically reflecting on human...
Care, Coercion and Dignity at the End of Life
Studies in Christian Ethics, 2018
End-of-life debates in medical ethics often centre around several interrelated issues: improving care, avoiding coercion, and recognising the dignity and rights of the terminally ill. Care ethics advocates relational autonomy and non-abandonment. These commitments, however, face system pressures-economic, social and legal-that can be coercive. This article takes up two related aspects in this domain of ethics. Firstly, that competence and communication are core clinical ethics principles that can sidestep the overplayed dichotomies in end-of-life care. And secondly, it questions the assumption that advance directives are universally benevolent-comparing the provisions of the Council of Europe's 1999 recommendations on protection of human rights and dignity of the dying within the framework of the Irish context. The article also registers the unintended impacts of changing legal frameworks in relation to euthanasia and assisted suicide in Europe, including recent proposals in the Netherlands. A focus on human dignity can provide a theologically and philosophically shared normative orientation that argues for present directives rather than only advance directives, and a presumption in favour of 'living up to death'. Dignity approaches not only grant rights but secure them by supporting ongoing initiatives that honour, rather than erode, the 'longevity dividend'.
RADOSTA, Darío - Hospice care as humanized end-of-life care
Salud Colectiva, 2021
This study aims to analyze end-of-life care practices carried out at a hospice institution located in the province of Buenos Aires, Argentina. Based on a qualitative research methodology, ethnographic fieldwork was carried out between 2016 and 2020. Fieldwork included participant observation of the day-today work of diverse volunteer teams and nursing professionals, which was complemented with informal conversations and two surveys. Additionally, semi-structured interviews with key actors were conducted. The data collected reflect some of the values of hospice care that directly challenge the biomedical model, such as integrality, holism, and respect for the autonomy of the sick person. This article puts forth the hypothesis that care-as a constitutive practice of human interaction-produces and reproduces values that make up the structures of social life. Therefore, analyzing care practices in non-clinical contexts, based on proposals that seek to humanize the context of health care, provides tools to think critically about the values that structure our health system.
Dying, Dignity, and New Horizons in Palliative End-of-Life Care
CA: A Cancer Journal for Clinicians, 2006
Palliative care practitioners are now better able than ever before to ameliorate endof-life symptom distress. What remains less developed, however, is the knowledgebase and skill set necessary to recognize, assess, and compassionately address the psychosocial, existential, and spiritual aspects of the patient's dying experience. This review provides an overview of these areas, focusing primarily on empirical data that has examined these issues. A brief overview of psychiatric challenges in end-of-life care is complemented with a list of resources for readers wishing to explore this area more extensively. The experience of spiritual or existential suffering toward the end of life is explored, with an examination of the conceptual correlates of suffering. These correlates include: hopelessness, burden to others, loss of sense of dignity, and desire for death or loss of will to live. An empirically-derived model of dignity is described in some detail, with practical examples of diagnostic questions and therapeutic interventions to preserve dignity. Other interventions to reduce existential or spiritual suffering are described and evidence of their efficacy is presented. The author concludes that palliative care must continue to develop compassionate, individually tailored, and effective responses to the mounting vulnerability and increasingly difficult physical, psychosocial, and spiritual challenges facing persons nearing the end of life.
Death education, 1978
The need for a critical and analytical approach to the ethics of terminal care is suggested by considering a series of unexamined questions regarding the justification of terminal care. Among them are: (1) Do patients have a right to terminal care? (2) What qualifies personnel to provide terminal care? (3) Do we really know what “care,” a “good death,” or “accepting one's death” mean? (4) Are assumptions about the hospice model contradictory to the demands of scientific research? If terminal care is, as many seem to believe, a moral and ethical enterprise, then such considerations must be given a more prominent place in discussions of the hospice movement.
To Die Well: The Phenomenology of Suffering and End of Life Ethics
Medicine, Health Care, and Philosophy, 2020
The paper presents an account of suffering as a multi-level phenomenon based on concepts such as mood, being-in-the-world and core life value. This phenomenological account will better allow us to evaluate the hardships associated with dying and thereby assist health care professionals in helping persons to die in the best possible manner. Suffering consists not only in physical pain but in being unable to do basic things that are considered to bestow meaning on one's life. The suffering can also be related to no longer being able to be the person one wants to be in the eyes of others, to losing one's dignity and identity. These three types of suffering become articulated by a narrative that holds together and bestows meaning on the whole life and identity of the dying person. In the encounter with the patient, the health-care professional attempts to understand the suffering-experience of the patient in an empathic and dialogic manner, in addition to exploring what has gone wrong in the patient's body. Matters of physician assisted suicide and/or euthanasia-if it should be legalized and if so under which conditions need to be addressed by understanding the different levels of human suffering and its positive counterpart, human flourishing, rather than stressing the respect for patient autonomy and no-harm principles, only. In this phenomenological analysis the notions of vulnerability and togetherness, ultimately connecting to the political-philosophical issues of how we live together and take care of each other in a community, need to be scrutinized.