[Death, euthanasia and end-of-life decisions according to the relatives' perspective -- a survey after the death of a close relative]

Abstract

Empirical research on euthanasia and medical decisions at the end of life usually focus on the doctors' perspective. The perspectives of patients, relatives respectively the bereaved families have been neglected so far. The project "Patients as partners. Tumour patients and their participation" aims to improve the participation of tumour patients in medical decision making at the end of life by means of several offerings for patients. In order to develop a theoretical model, interviews were conducted with patients, relatives, doctors and members of the bereaved families. Between March 2002 and July 2004 questionnaires were sent to the bereaved families about eight to ten weeks after their relatives had perished. Before dying, the patients had been looked after and offered consultation by a palliative care team either in hospital or at home.

Results: Of 151 sent out questionnaires, 59.6 % (n = 90) were filled in and sent back by members of the bereaved families. 52.3 % of the patients had died in hospital, 33.7 % in their private home. All of the patients who died at home, but only one in three patients who died in hospital also wanted to die there. The relatives were predominantly very satisfied or satisfied with the medical care (67.8 %). 11 % of the bereaved families said, their dying relatives had seriously asked for euthanasia. In 74.4 % of all cases, decisions for the renunciation of therapy were made, mostly due to a worsening of the general condition (54.4 %) or a progress of the disease (46.6 %).

Conclusion: The questioning was successfully conducted. Members of bereaved families are able and also prepared to answer questions about the last days of their relatives lives. The question about the desired dying place has proved to be workable. In empirical research, the perspective of the relatives and bereaved families should be taken in to account seriously.