Nationwide study of decisions concerning the end of life in general practice in the Netherlands

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Abstract
Objective: To gain insight into decisions made in general practice about the end of life. Design: Study I: interviews with 405 physicians. Study II: analysis of death certificates with data obtained on 5197 cases in which decisions about the end of life may have been made. Study III: prospective study with doctors from study I: questionnaires used to collect information about 2257 deaths. The information was representative for all deaths in the Netherlands. Results: Over two fifths of all patients in the Netherlands die at home. General practitioners took fewer decisions about the end of life than hospital doctors and doctors in nursing homes (34%, 40%, and 56% of all dying patients, respectively). Specifically, decisions to withhold or withdraw treatment to prolong life were taken less often. Euthanasia or assisted suicide, however, was performed in 3.2% of all deaths in general practice compared with 1.4% in hospital practice. In over half of the cases concerning pain relief or non-treatment general practitioners did not discuss the decision with the patient, mostly because of incapacity of the patient, but in 20% of cases for “paternalistic” reasons. Older general practitioners discussed such decisions less often with their patients. Colleagues were consulted more often if the general practitioner worked in group practice. Conclusion: Differences in work situation between general practitioners and hospital doctors and differences between the group of general practitioners contribute to differences in the number and type of decisions about the end of life as well as in the decision making process.