recherche soins palliatifs suisse

Liste des projets - Détails

Titre / Sujet

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

Durée

12.2006 – 06.2012

Brève description

Aims: This exploratory interview-based study investigated the subjective understanding and the characteristics of a wish to die in terminally ill cancer patients with short life expectancy in Switzerland. It aimed at exploring factors associated with a wish to die in patients a) who wish to die but who do not wish to interfere in the course of illness in comparison to patients b) who explicitly express a wish to hasten death with either passive or active measures. The perspectives of patients in end-of-life care, including its temporal development and relatedness to caregivers and relatives have been studied with an interpretative phenomenological approach on the basis of 116 interviews in the main study with 30 patients, their nurses, their doctors and their relatives. The work plan included a previous pilot study that established and evaluate the methodology. Results should help to improve end-of-life care decision-making and should inform the ethics of end-of-life care of cancer patients.

Results: The data show that a WTD is a multilayered, dynamic and interactive process. From a phenomenological perspective, a WTD can be described by three aspects: intentions, motivations and interactions. A typology of the possible intentions of a WTD statement has been developed. We identified nine different (ideal) types that WTD statements might have, other than wishing to live and accepting death. Many WTD statements did not imply a desire to hasten death. Some WTD statements contain several partial wishes, which can be in tension with each other and build a dynamic, sometimes unstable equilibrium. One single WTD statement can contain multiple wishes that capture the ambivalence of the life situation of patients confronted with their approaching death.

Conclusions: Terminally ill persons experience and mean quite different things when expressing a WTD, and deeper knowledge of these differences is ethically relevant. For an adequate clinical response, WTD statements need to be understood within the broad spectrum of possible intentions and within the overall life-narratives of the patients.

Discipline/-s

Sociologie, Oncologie, Autres disciplines

Institution/-s

Hospiz im Park, Arlesheim, Basel Institut für Bio- und Medizinethik der Universität Basel, Institut für Medizingeschichte und Wissenschaftsforschung der Universität zu Lübeck

Direction (du projet)

Professor Dr. phil., dipl. biol. Christoph Rehmann-Sutter, Institute for History of Medicine and Science Studies, Königstrasse 42, D-23552 Lübeck, Germany, und Dr. med. Heike Gudat, Hospiz im Park, Hospital for Palliative Care, Stollenrain 12, CH-4144 Arlesheim, Switzerland

Collaborations

Vorstudie (Dez. 2006 - März 2007): Förderstiftung Hospiz im Park, Freiwillige Akademische Gesellschaft FAG. Haupstudie (Sept. 2008 - Juni 2012): Oncosuisse (Oncosuisse Projekt 01960 – 10 – 2006), Gottfried und Julia Bangerter-Rhyner-Stiftung, Förderstiftung Hospiz im Park

Mots-clés (in english)

Wish to die, wish to hasten death, end-of-life care ethics, ethics in palliative care, death

Publications

Kathrin Ohnsorge, Heike Gudat, Christoph Rehmann-Sutter: The intentions in wishes to die: analysis and a typology. Part I of a report of 30 qualitative case studies with terminally ill cancer patients in palliative care (submitted).

Kathrin Ohnsorge, Heike Gudat, Christoph Rehmann-Sutter: What a wish to die can mean. Part II of a report of 30 qualitative case studies with terminally ill cancer patients in palliative care (submitted).

Heike Gudat: Palliative Care oder Exit? PrimaryCare 2012; 12(19): 372-374.

Christoph Rehmann-Sutter: Sterben als Teil des Lebens und als Handlungsraum. Ethische Ueberlegungen. Wittgenstein-Studien 4(2013), in press.

Kathrin Ohnsorge, Christoph Rehmann-Sutter: Menschen, die sterben möchten. Empirische Studien in
der Palliativmedizin und ihre ethischen Implikationen. In: Annette Hilt, Isabella Jordan, Andreas Frewer
(Hg.): Endlichkeit, Medizin und Unsterblichkeit. Stuttgart: 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 Lebensführung. Zürich: Pendo 2011, S. 271-293.

Kathrin Ohnsorge, Guy Widdershoven: Monological Versus Dialogical Consciousness – Two
Epistemological Views on the Use of Theory in Clinical Ethical Practice. Bioethics 25 (2011): 361-369.

Christoph Rehmann-Sutter, Rouven Porz, Jackie Leach Scully: How to Relate the Empirical to the Normative. Toward a Phenomenologically Informed Hermeneutic Approach to Bioethics. Cambridge Quarterly of Healthcare Ethics 21(2012): 436-447. Doi:10.1017/S0963180112000217

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.

Heike Gudat, Christoph Rehmann-Sutter, Kathrin Ohnsorge: Sterbewünsche – weit mehr als ein Hilferuf. Schweizer Krebsbulletin Nr. 1/2013, S. 33-35.

Christoph Rehmann-Sutter, Kathrin Ohnsorge, Heike Gudat: Understanding terminally ill patients’ wishes to die (In: Beate Herrmann et al., eds.: New Issues in Ethics and Oncology. München: Alber, in press)

Remarques

Weitere involvierte Disziplinen: Philosophie, Ethik, Sozialpsychologie, Palliativmedizin

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