Transcript Document
Advance directives in dementia: why are they not effective? Marike de Boer Research Programme > Quality of Care VU University Medical Center EMGO Institute for Health and Care Research Department of Nursing Home Medicine Amsterdam, the Netherlands Advance directives in dementia • Introduction • Background • Methods • Findings (preliminary) • Conclusion Background • Advance directives statements which allow people, before decisional incapacity, to give directions for future care • Types of advance directives oral advance directive ↔ written advance directive proxy directive treatment directive negative treatment directive medical treatment • Limited information on use positive treatment directive euthanasia Methods • Survey among nursing home physicians - general questions about the use of advance directives - case-specific questions • Additional interviews: - nursing home physicians (12) - relatives of people with dementia (9) Results (1) - questionnaire • Prevalence - On average 33 pg-patients - One or two have an advance directive - Less than half (47%) of the directives include a request for euthanasia Results (2) - questionnaire • Attitudes of physicians Do you consider it possible you would, in the future, perform euthanasia on a patient with dementia who has an advance euthanasia directive? Yes Physicians without experience Physicians with experience Total (n=324) (n=110) (n=434) % % % 9,0 14,5 10,4 30,9 45,4 29,7 40,1 38,3 Yes, if the patient is competent 29,3 No 40,4 35,5 39,2 Don’t know 21,3 19,1 20,7 • Actual practice - in only 4 cases euthanasia was performed (<1%) - all other cases: euthanasia was not performed Results (3) - questionnaire • Indicated reasons for not complying with advance euthanasia directive: N (110) % Policy of nursing home 16 14,5 Personal beliefs 17 15,5 Situation directive not applicable 17 15,5 No unbearable suffering 40 36,4 No hopeless suffering 11 10,0 No communication: wish unclear 8 7,2 No actual wish 8 7,2 Patient imcompetent 5 4,5 75 68,1 Other • Other factors: - in 13% of the cases the patient did not want euthanasia - in 15% of the cases relatives of patients did not want euthanasia Results (4) - interviews • Relatives who do not want euthanasia ‘ My father, yes, he would have never wanted this for her of course, but to give her an injection, so to speak of, well, that he didn’t want either, you know’ [relative] • Difficulties in determining the ‘suffering’ ‘The patient expressed discomfort at times she was aware of her deterioration or when things happened she didn’t like. At other times there was no awareness and the patient seemed ‘content’’ [physician] ‘we actually had the feeling, that despite the fact that she became demented, eh she could still enjoy many things. It wasn’t really someone who ehm who was suffering’ [relative] Results (5) - interviews • Absense of actual wish ‘..a patient with dementia who has an advance euthanasia directive but does not ask for it, for actual life-termination, you know, or does not specifically expresses all sorts of death-wishes and consistently does that, then I wouldn’t even think about it [euthanasia]’ • Policy of nursing home often restricts euthanasia ‘I have indicated that it is not possible for me to end madams life in case her situation is stable and she does not ask for it herself, only because she lives in a nursing home’ [physician] ‘Take care of madam as well as possible and relief complaints if they occur, but not to push it to the limit’ [physician] Results (6) - questionnaire • According to physicians in 63% of the cases relatives wanted a restricted policy of treatment instead of euthanasia • In 93% of cases decisions were made not to start or withdraw one or more lifeprolonging treatment(s) • Factors influencing the decision to forgo life-proloning treatment(s) No influence Limited influence Strong influence Very strong influence Determined decision n/a Unknown Medical situation 4,5 5,5 10,0 32,7 40,9 - 6,4 Severe other illness 16,4 15,5 16,4 20,0 17,3 7,3 7,3 Opinion relatives 10,9 20,9 18,2 27,3 9,1 5,5 8,2 Opinion representative 4,5 14,5 22,7 39,1 10,9 1,8 6,4 Opinion nursing staff 4,5 22,7 31,8 25,5 6,4 1,8 7,3 Personal opinion physician 1,8 16,4 24,5 29,1 18,2 - 10,0 Patient-docter relation 20,9 18,2 27,3 14,5 8,2 2,7 8,2 Policy nursing home 37,3 17,3 18,2 12,7 3,6 2,7 8,2 Opnion patient 21,8 12,7 15,5 15,5 10,9 12,7 10,9 8,2 12,7 20,9 26,4 23,6 ,9 7,3 Advance euthansia directive Conclusions • Positive attitudes towards advance directives in general • Advance (euthanasia) directives do not seem to achieve what they intend to achieve • Reluctance to perform euthanasia in cases of dementia • Questions can be raised regarding the effectiveness of advance directives of people with dementia • Reconsider the role of advance (euthanasia) directives Advance directives in dementia Thank you for your attention! Marike de Boer [email protected]