Dutch GPs’ experience of burden by euthanasia requests from people with dementia: a quantitative survey

BACKGROUND: In the Netherlands during the past decade, a growing number of people with dementia requested euthanasia, and each year more of such requests were granted. AIM: To obtain quantitative insights into the problems and needs of GPs when confronted with a euthanasia request by a person with dementia. DESIGN & SETTING: A concept survey was composed for GPs in the Netherlands. Expert validity of the survey was achieved through pilot testing. METHOD: A postal survey was sent to a random sample of 900 Dutch GPs, regardless of their opinion on, or practical experience with, euthanasia. Collected data were analysed with descriptive statistics. RESULTS: Of 894 GPs, 423 (47.3%) completed the survey, of whom 176 (41.6%) had experience with euthanasia requests from people with dementia. Emotional burden was reported most frequently (n = 86; 52.8%), as well as feeling uncertain about the mental competence of the person with dementia (n = 77; 47.2%), pressure by relatives (n = 70; 42.9%) or the person with dementia (n = 56; 34.4%), and uncertainty about handling advance euthanasia directives (AEDs) (n = 43; 26.4%). GPs would appreciate more support from the following: a support and consultation in euthanasia in the Netherlands (SCEN) physician (an independent physician for support, information, and formal consultation around euthanasia) (n = 291; 68. 8%); a geriatric consultation team (n = 185; 43.7%); the end-of-life clinic (n = 184; 43.5%); or a palliative care consultation team (n = 179; 42.3%). Surprisingly the need for moral deliberation was hardly mentioned. CONCLUSION: The reported burden and the rise in numbers and complexity of euthanasia requests from people with dementia warrants primary care support. There needs to be easier access to colleagues with expertise, and training on end-of-life care needs of patients with dementia and their caregivers.