• Cis Vrijmoeth, Milou G M Christians, Dederieke A M Festen, Marieke Groot, Agnes van der Heide, Carin C D van der Rijt, Marijke Tonino, and Michael A Echteld.
• 1 Intellectual Disabilities and Health, Department of Primary and Community Health Care, Radboudumc , Nijmegen, The Netherlands .
• J Palliat Med. 2016 Nov 1; 19 (11): 1142-1147.

BackgroundInsights into symptoms and interventions at the end of life are needed for providing adequate palliative care, but are largely lacking for people with intellectual disabilities (IDs).ObjectivesWe aimed at determining the prevalence rates of physician-reported symptoms from the Edmonton Symptom Assessment System (ESAS) at the moment that physicians recognized patient's death in the foreseeable future. In addition, we aimed at exploring provided interventions as reported by physicians in the period between physicians' recognition of death in the foreseeable future and patients' death.MeasurementsIn this study, 81 physicians for people with IDs (ID-physicians) completed a retrospective survey about their last patient with IDs with a nonsudden death.ResultsOn average, patients suffered from three of the eight ESAS symptoms. Fatigue (83%), drowsiness (65%), and decreasing intake (57%) were most reported. ID-physicians reported a median number of four interventions. Interventions were mostly aimed at somatic problems, such as pain and shortness of breath. Burdensome interventions such as surgery or artificial respiration were least or not reported. Palliative sedation was provided in a third of all cases.ConclusionAlthough ID-physicians reported a variety of their patients' symptoms and of provided interventions at the end of life, using adequate symptom assessment tools suitable for people with IDs and continuous multidisciplinary collaboration in palliative care are essential to capture symptoms as fully as possible.

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