RETROSPECTIVE STUDY OF DOCTORS END OF LIFE DECISIONS IN CARING FOR MENTALLY-HANDICAPPED PEOPLE IN INSTITUTIONS IN THE NETHERLANDS

Objectives: To 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 mentall y handicapped people in the Netherlands, and to describe important asp ects of the decisions making process. Design: Survey of random sample of doctors caring for mentally handicapped people by means of self com pleted questionnaires and structured interviews. Subjects: 89 of the 1 01 selected doctors completed the questionnaire. 67 doctors had taken an end of life decision and were interviewed about their most recent c ase. Main outcome measures: Prevalence of end of life decisions; types of decisions; characteristics of patients; reasons why the decision w as taken; and the decision making process. Results: The 89 doctors rep orted 222 deaths for 1995, An end of life decision was taken in 97 cas es (44%); in 75 the decision was to withdraw or withhold treatment, an d in 22 it was to relieve pain or symptoms with opiates in dosages tha t 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 y ears old (51). Only two patients explicitly asked to die, but in 23 ca ses there had been some communication with the patient In 60 cases the doctors discussed the decision with nursing staff and in 46 with a co lleague. Conclusions: End of life decisions are an important aspect of the institutionalised care of mentally handicapped people. The propor tion of such decisions in the total number of deaths is similar to tha t in other specialties. However, the discussion of such decisions is l ess open in the care of mental handicap than in other specialties. Bec ause of distinctive features of care in this specialty an open debate about end of life decisions should not be postponed.