Aims Physicians' end-of-life decisions (ELD) in patients with dementia have not been extensively studied; however dementia can complicate communication and is a known risk factor for underdiagnosis and undertreatment of pain. We examined end-of-life decision-making in patients with any diagnosis of dementia and compared it with that in cancer patients. Methods Physicians who certified a representative sample of 8627 death certificates in Brussels and Flanders, Belgium completed written questionnaires about ELDs (50 % response rate). Patients with any diagnosis of dementia (N=361) and with cancer and no dementia (N=1272) were retained for analyses, and younger (18-79 years) and older patients (80+) were compared. Results Lethal drugs were less often used in patients with dementia than those with cancer (3.9% vs. 7.1%), but were never preceded by an explicit request in dementia patients. When continuous deep sedation (CDS) was initiated it was significantly more often without the patient's consent or request in patients who died with dementia than cancer, (younger: 73.3% vs. 29.1%; older: 53.2% vs. 23.6%). Intensified alleviation of pain and symptoms (APS) occurred less often in dementia patients than in patients with cancer. Physicians more often reported patients' low quality of life (QoL) as reasons for the ELD in dementia patients; and pain more often as a factor in cancer patients. Despite this, reported pain levels in the last 24 hours did not differ significantly and dementia patients were significantly less likely to be in receipt of opiates (younger: 49.3% vs. 83.6%; older: 50.2% vs. 74.3%) or benzodiazepines (younger: 17.8% vs. 43.8%; older: 19.4% vs. 30.0%) during the final 24 hours of life. Conclusion This study indicates specific end-of-life decision making patterns in patients with dementia. Dementia represents a rapidly growing and complex clinical group whose end of life treatment warrants continued empirical attention.
- palliative care
- end-of-life decisions