• BMJ · Jul 1997

    Retrospective study of doctors' "end of life decisions" in caring for mentally handicapped people in institutions in The Netherlands.

    • G J van Thiel, J J van Delden, K de Haan, and A K Huibers.
    • Centre for Bioethics and Health Law, Utrecht University, The Netherlands.
    • BMJ. 1997 Jul 12;315(7100):88-91.

    ObjectivesTo gain insight into the reasons behind and the prevalence of doctors' decisions at the end of life that might hasten a patient's death ("end of life decisions") in institutions caring for mentally handicapped people in the Netherlands, and to describe important aspects of the decisions making process.DesignSurvey of random sample of doctors caring for mentally handicapped people by means of self completed questionnaires and structured interviews.Subjects89 of the 101 selected doctors completed the questionnaire. 67 doctors had taken an end of life decision and were interviewed about their most recent case.Main Outcome MeasuresPrevalence of end of life decisions; types of decisions; characteristics of patients; reasons why the decision was taken; and the decision making process.ResultsThe 89 doctors reported 222 deaths for 1995. An end of life decision was taken in 97 cases (44%); in 75 the decision was to withdraw or withhold treatment, and in 22 it was to relieve pain or symptoms with opiates in dosages that may have shortened life. In the 67 most recent cases with an end of life decision the patients were mostly incompetent (63) and under 65 years old (51). Only two patients explicitly asked to die, but in 23 cases there had been some communication with the patient. In 60 cases the doctors discussed the decision with nursing staff and in 46 with a colleague.ConclusionsEnd of life decisions are an important aspect of the institutionalised care of mentally handicapped people. The proportion of such decisions in the total number of deaths is similar to that in other specialties. However, the discussion of such decisions is less open in the care of mental handicap than in other specialties. Because of distinctive features of care in this specialty an open debate about end of life decisions should not be postponed.

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