Terminally ill patients’ wish to die. The attitudes and concerns of patients with incurable cancer about the end of life and dying: ZBV

Terminally ill patients’ wish to die. The attitudes and concerns of patients with incurable cancer about the end of life and dying

This exploratory interview-based study investigates the subjective understanding, in particular the diachronic and relational characteristics of a wish to die in terminally ill cancer patients with short life expectancy in Switzerland. It investigates the phenomenon of a wish to die in the context of the subjective experiences of an incurable fatal oncological condition and of the situation of being on a way to death. A wish to die can have different meanings for the patient, depending on a wide range of factors in the context of their life histories. The differences in meaning might have an impact for the decisions in best end-of-life care.

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This exploratory interview-based study investigates the subjective understanding, in particular the diachronic and relational characteristics of a wish to die in incurably ill, palliative non-cancer patients in Switzerland. It investigates the phenomenon of a wish to die in the context of the subjective experiences of an illness trajectory and of the situation of being on a way to death. A wish to die and a wish to die statement can have different reasons, meanings and functions for the patient, the family, and the caregivers, depending on a wide range of factors in the context of their life histories. The differences in reasons, meanings and functions might have an impact for the decisions in best end-of-life care.
The study aims to explore the subjective phenomenon of a wish to die, i.e. the content and dynamics of the experience of a wish to die in patients who (a) wish to die but who do not wish to interfere in the course of illness in comparison to patients, who (b) explicitly express a wish to hasten death with either passive or active measures, and (c) with patients who are confronted with the situation to be near death without an explicit wish to die. A special attention is given to the influence of the attitudes of relatives and caregivers on patients’ attitudes and concerns.
The perspectives, attitudes and concerns of patients in end-of-life care, including their ethical concerns and thinking shall be studied with an interpretative phenomenological approach on the basis of 30 patient case studies involving ca. 150 qualitative interviews with the patients, their medical team and their relatives. Non-oncology patients shall be studied, including (1) neurological diseases, (2) organ failure, and (3) frailty. The chosen method allows to study the ethical perspectives on the near death of a patient from different involved actors: the patient her- or himself, those responsible for medical care and nursing, and those affected by the expected loss of a relative. It also allows to study the development of a wish to die in the course of time. The work plan is based on a previous study with oncology patients (2008-2011; financed by Oncosuisse and Bangerter-Rhyner), where the methodology has been established. The project develops a comparative perspective on oncology and non-oncology patients.
Results will help to improve end-of-life care decision-making and will inform the ethics of end-of-life care of both non-cancer and cancer patients and will be relevant for palliative medicine in general.

Projektleitung:

Prof. Chritoph Rehmann-Sutter
Dr. med. Heike Gudat

Publikationen:

Heike Gudat: Palliative Care oder Exit? Primary Care 12 (2012): 272-273

Kathrin Ohnsorge, Heike R. Gudat Keller, Guy A. M. Widdershoven, Christoph Rehmann-Sutter: ‘Ambivalence’ at the end of life: How to understand patients’ wishes ethically. Nursing Ethics 19 (2012): 629-641

Kathrin Ohnsorge und Christoph Rehmann-Sutter: Menschen, die sterben möchten. Empirische Studien in der Palliativmedizin und ihre ethischen Implikationen. in: Annette Hilt, Isabella Jordan, Andreas Frewer (eds.): Endlichkeit, Medizin und Unsterblichkeit. Geschichte-Theorie-Ethik. Stuttgart: Franz Steiner 2010, S. 249-270.

Christoph Rehmann-Sutter: Leben enden lassen. Ethik von Entscheidungen über das Lebensende. In: Angelika Krebs, Georg Pfleiderer, Kurt Seelmann, Hrsg.: Ethik des gelebten Lebens. Basler Beiträge zu einer Ethik der Lebensührung. Zürich: Pendo, 2011, S. 271-293.

Christoph Rehmann-Sutter, Rouven Porz, Jackie Leach Scully: How to Relate the Empirical to the Normative. Towards a Phenomenologically Informed Hermeneutic Approach to Bioethics. Cambridge Quarterly of Healthcare Ethics 21(2012):436-447, DOI:10.1017/s0963180112000217
http://www.imgwf.uni-luebeck.de/_data/Flyer_Tagung_leicht.pdf Terminally ill patients’ wish to die. The attitudes and concerns of patients with incurable cancer about the end of life and dyingFinal Conference in Basel, 1-2 June 2012