Retrospective study of doctors' "end of life decisions" in caring for mentally handicapped people in institutions in The Netherlands.
OBJECTIVE
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 mentally handicapped people in the Netherlands, and to describe important aspects of the decisions making process.


METHODS
Survey of random sample of doctors caring for mentally handicapped people by means of self completed questionnaires and structured interviews.


METHODS
89 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.


METHODS
Prevalence of end of life decisions; types of decisions; characteristics of patients; reasons why the decision was taken; and the decision making process.


RESULTS
The 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.


CONCLUSIONS
End 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.
van Thiel
G J
GJ
Centre for Bioethics and Health Law, Utrecht University, The Netherlands.
van Delden
J J
JJ
de Haan
K
K
Huibers
A K
AK
D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D003657:Decision Making; D005065:Euthanasia / Q000706:statistics & numerical data*; D028601:Euthanasia, Active; D005066:Euthanasia, Passive / Q000706:statistics & numerical data; D005260:Female; D019538:Health Care Surveys; D006801:Humans; D008607:Intellectual Disability / Q000523:psychology* / Q000628:therapy; D008297:Male; D016743:Mental Competency; D008875:Middle Aged; D009426:Netherlands / Q000453:epidemiology; D010818:Practice Patterns, Physicians' / Q000706:statistics & numerical data*; D015995:Prevalence; D012189:Retrospective Studies; D012297:Right to Die; D013315:Stress, Psychological; D028761:Withholding Treatment