• H Voss, A Vogel, WagemansA M AAMAMaasveld, Medische Dienst, Koraal, Maastricht, The Netherlands.Expertise Centre for Palliative Care, Maastricht University Medical Centre, Maastricht, The Netherlands.Department of Family Medicine, Faculty of Health, Medicine and Life Scie, A L Francke, MetsemakersJ F MJFMDepartment of Family Medicine, Faculty of Health, Medicine and Life Science, Maastricht University, Maastricht, The Netherlands., A M Courtens, and de VeerA J EAJEVerpleging & Verzorging, Netherlands Institute for Health Services Research (Nivel), Utrecht, The Netherlands..
• Verpleging & Verzorging, Netherlands Institute for Health Services Research (Nivel), Utrecht, The Netherlands.
• J Intellect Disabil Res. 2019 Oct 1; 63 (10): 1262-1272.

BackgroundAdvance care planning (ACP) is a process in which professionals, patients and their relatives discuss wishes and options for future care. ACP in the palliative phase reduces the chance that decisions have to be taken suddenly and can therefore improve the quality of life and death. The primary aim of this study is to explore how ACP takes place in cases of people with intellectual disabilities (ID).MethodMedical files were analysed, and interviews were held in six care organisations for people with mild to severe ID. The data concerned people with ID (n = 30), 15 in the palliative phase, identified using the 'surprise question', and 15 who had died after an identifiable period of illness. Additional pre-structured telephone interviews were conducted with their relatives (n = 30) and professionals (n = 33).ResultsFor half of the people with ID who had died, the first report in their file about palliative care (needs) was less than 1 month before their death. Professionals stated that ACP was started in response to the person's deteriorating health situation. A do-not-attempt-resuscitation order was recorded for nearly all people with ID (93%). A smaller group also had other agreements between professionals and relatives documented in their files, mainly about potentially life-sustaining treatments (43%) and/or hospitalisation admissions (47%). Relatives and professionals are satisfied with the mutual cooperation in ACP in the palliative phase. Cognitive and communication disabilities were most frequently mentioned by relatives and professionals as reasons for not involving people with ID in ACP.ConclusionsAdvance care planning in the palliative phase of people with ID focuses mainly on medical issues at the end of life. Specific challenges concern a proactive identification of changing needs, fear to initiate ACP discussions, documentation of ACP in medical files and the involvement of people with ID in ACP. It is recommended that relatives and professionals should be informed about the content of ACP and professionals should be trained in communicating in advance about wishes for future care.© 2019 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.

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