Interdisciplinary research approach based on a mixed-methods design to explore patient altruism at the end of life: a study protocol.
Mathieu Bernard, Claudia Gamondi, Anca-Cristina Sterie, Philip J Larkin, Ralf J Jox, Gian Domenico Borasio
Author Information
Mathieu Bernard: Palliative and Supportive Care Service, Chair of Palliative Psychology, Lausanne University Hospital and University of Lausanne, Lausanne, Vaud, Switzerland mathieu.bernard@chuv.ch. ORCID
Claudia Gamondi: Palliative and Supportive Care Service, Lausanne University Hospital and University of Lausanne, Lausanne, Vaud, Switzerland.
Anca-Cristina Sterie: Palliative and Supportive Care Service and Service of Geriatric Medicine and Geriatric Rehabilitation, Chair of Geriatric Palliative Care and Chair of Palliative Psychology, Lausanne University Hospital and University of Lausanne, Lausanne, Vaud, Switzerland.
Philip J Larkin: Palliative and Supportive Care Service, Chair of Palliative Care Nursing, Lausanne University Hospital and University of Lausanne, Lausanne, Vaud, Switzerland.
Ralf J Jox: Palliative and Supportive Care Service and Service of Geriatric Medicine and Geriatric Rehabilitation, Chair of Geriatric Palliative Care, Lausanne University Hospital and University of Lausanne, Lausanne, Vaud, Switzerland.
Gian Domenico Borasio: Palliative and Supportive Care Service, Lausanne University Hospital and University of Lausanne, Lausanne, Vaud, Switzerland.
INTRODUCTION: In the end of life context, patients are often seen as somewhat passive recipients of care provided by health professionals and relatives, with little opportunity to be perceived as autonomous and active agents. Since studies show a very high prevalence of altruistic dispositions in palliative care patients, we strive to investigate the concept of patient altruism in a set of six interdisciplinary studies by considering three settings: (1) in the general palliative context-by studying to what extent patient altruism is associated with essential psychological outcomes of palliative care (subproject 1a), how altruism is understood by patients (subproject 1b) and how altruism expressed by patients is experienced by palliative care nurses (subproject 1c); (2) in two concrete decision-making contexts-advance care planning (subproject 2a) and assisted suicide (subproject 2b); and (3) through verbal and non-verbal patient communication in palliative care settings (subproject 3). METHODS AND ANALYSIS: Subproject 1a: a cross-sectional study using validated and standardised questionnaires. Subprojects 1b and 1c: a constructivist grounded theory method aiming at developing a novel theory from semistructured interviews in both patients and nurses. Subproject 2a: a thematic analysis based on (1) audio-recordings of advance care planning encounters and (2) follow-up semidirective interviews with patients and their relatives. Subproject 2b: a qualitative study based on thematic analysis of interviews with patients actively pursuing assisted suicide and one of their relatives.Subproject 3: a conversation analysis based on audio and video-recorded interactions in two settings: (1) palliative inpatient unit and (2) advance care planning discussions. ETHICS AND DISSEMINATION: The study project was approved by the Ethics Committees of the Canton of Vaud, Bern and Ticino (no: 2023-00088). In addition to participation in national and international conferences, each project will be the subject of two scientific publications in peer-reviewed journals. Additional publications will be realised according to result triangulation between projects. A symposium opened to professionals, patients and the public will be organised in Switzerland at the end of the project.
