"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.

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.

[An overview on palliative care and the end of life. Results of a survey conducted in a sample of the French population]. / Regards sur les soins palliatifs et la fin de vie. Résultats d'une enquête réalisée sur un échantillon de la poulation française.

OBJECTIVE: To have an overview of the French population concerning palliative care. METHOD: French opinion poll, based on a questionnaire submitted to 302 persons recruited at random in the street, in several regions of France. It included questions concerning the representation of pain, the sick body, death, the end of life and palliative care. RESULTS: Regarding the management of pain, the majority of persons surveyed (59.6%) felt that the general practitioner was the appropriate referent to treat pain. The population's experience with regard to the death of a close relative revealed that death had occurred in hospital in 58.3% of cases. Nevertheless, the majority (57%) of the population wished to die in their own home. The concept of palliative care centres is increasing in the public's mind, but remains vague in its practical aspects for 60.9% of the population surveyed. For 29.5% of the population surveyed, information and training of health professionals in palliative care was considered as a priority. CONCLUSION: The end of life and death is a source of fear for most of the population. This motivates a transfer towards the medical corps for the professional and technical management of this period of life, and the health professionals must be prepared to respond appropriately to this specific demand.