Advance (Meta-) Directives for Patients with Dementia who Appear Content: Learning from a Nationwide Survey

Abstract

ObjectivesWhether health care professionals should respect a properly executed advance directive (AD) refusing life support in late-stage dementia even if the patient seems contented, is an ethically contested issue. We undertook a nationwide survey to assess this problem and to test a practical solution. DesignNationwide survey using a questionnaire among 4 stakeholder groups. SettingGermany. ParticipantsAdult Germans (n = 735), among them: dementia-experienced physicians (n = 161), dementia-experienced nurses (n = 191), next of kin (n = 197), and dementia-inexperienced adults (n = 186). MeasurementsParticipants were asked about their attitudes on medical decision-making in a vignette case of treatable pneumonia, for their agreement or disagreement on standard ethical arguments in this debate, and for their views on modified versions of the case. One such modification was an explicit anticipation of the conflict in question by the patients themselves. ResultsOf our 735 eligible respondents, 25% were unwilling to follow the patient's AD. Standard arguments for and against respecting the directive were endorsed to different degrees. Respondents' unwillingness to follow the directive was significantly decreased (to 16.3%, P < .001), if the advance refusal of pneumonia treatment explicitly indicated that it applied to a patient who appears content in his demented state. Only 8.7% of respondents would disregard an advance refusal of tube feeding. ConclusionsPersons executing ADs forbidding life support in late-stage dementia run some risk that these will not be followed if they later appear “happy” in their dementia. It seems ethically and practically advisable to incorporate an explicit meta-directive for this conflict.