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Open Access Study protocol

"Card sorting": a tool for research in ethics on treatment decision-making at the end of life in Alzheimer patients with a life threatening complication

Lionel Pazart1*, Chrystelle Vidal1, Didier Faivre Chalon12, Sophie Gauthier3, Florent Schepens4, Elodie Cretin127, Jean-Louis Beal5, Pierre Pfitzenmeyer36 and Régis Aubry12

Author Affiliations

1 Clinical Investigation Centre, Inserm CIT 808, Besançon University Hospital, 2, Place St Jacques, 25030 Besançon, France

2 Pain & Palliative Care Department, Besançon University Hospital, Boulevard Fleming, 25030 Besançon, France

3 Burgundy Geriatric network, Champmaillot Geriatrics Centre, 2, rue Jules Violle, 21079 Dijon, France

4 Georges Chevrier Center, UMR CNRS 5605, University of Burgundy, 4, Boulevard Gabriel, 21000 Dijon, France

5 Palliative Care Centre, La Mirandière, 1, rue Gouge, 21800 Quetigny, France

6 Geriatrics Department, Champmaillot Geriatrics Centre, 2, rue Jules Violle, 21079 Dijon, France

7 Faculty of Philosophy, 'Logiques de l'Agir', EA2274, University of Franche-Comté, 30, rue Megevand, 25030 Besançon, France

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BMC Palliative Care 2011, 10:4  doi:10.1186/1472-684X-10-4

Published: 3 March 2011

Abstract

Background

End stage dementia is a particularly difficult aspect of care for patients with Alzheimer's disease and related dementias. In care institutions, caregivers and family are concerned by treatment decision-making for an acute life threatening complication occurring in Alzheimer patients at the end of life. How should the best treatment pathway be decided: to treat or not to treat? Which arguments are used for decision-making? These are mainly ethical questions which are currently difficult to express and investigate.

Methods/Design

Cross sectional multicentre study of clinical cases involving 67 health centres (university hospitals, general hospitals, local hospitals and homes for the elderly) in the east of France. The method was based on the "card sorting" technique, with a set of 36 cards, each labelled with a different item relating to arguments for treatment decision-making. For each clinical case, medical staff and carers expressed in a meeting the pieces of information which they believed had been taken into account in the decision. Each participant received a card game, selected fewer than ten and ranked them according to the importance they attached to each one. All selected cards were then put on the table anonymously for participants, respecting the order of importance of the cards in each pile. Lastly, all games were photographed together in order to analyse occurrence and order frequencies. The cards were then classified on the table by frequency to open the discussion. Discussion time, which was conducted by the head carer of the department, concerned the clinical situation of the patient based on the shared responses.

Discussion

During team meetings, the "card sorting" method was quickly adopted by professionals as a tool to assist with discussion beyond the context of the study. The participants were not compelled to mention their feelings in relation to a case, and it is significant that the anonymity which we tried to maintain so that each person felt "listened to" without value judgement was very often discarded by the individuals themselves.