title: Physicians' identification of the need for palliative care in people with intellectual disabilities.
abstract: BACKGROUND
  A growing number of people with intellectual disabilities (ID) is suffering from life-threatening chronic illnesses and is therefore in need for palliative care.
  
  
  OBJECTIVE
  We aimed to explore how the need for palliative care is recognized in people with ID.
  
  
  METHODS
  We conducted a semi-structured interview study among 10 ID-physicians in the Netherlands.
  
  
  RESULTS
  Identification of people with ID in need for palliative care mostly results from a process in which multiple signals from different information sources converge and lead to a growing awareness. As a result, ID-physicians do not expect people to return to their prior level of health or functioning, but rather expect an irreversible decline leading to death. The presence, stage and prognosis of the disease, physician-patient interaction, and communication with proxies who provide contextual information are factors influencing the process.
  
  
  CONCLUSIONS
  Distinctive for a population of people with ID are the frequent diagnostic uncertainty in people with ID, the patients' communicational abilities and the reliance of ID-physicians on close proxies. We argue for a proactive attitude of physicians regarding care and support of people with ID with palliative care needs.
authors: Intellectual Disabilities and Health, Department of Primary and Community Health Care, Radboudumc Nijmegen, PO box 9101 (route 68), 6500 HB Nijmegen, The Netherlands; Intellectual Disability Medicine, Department of General Practice, Erasmus MC Rotterdam, PO Box 2040 (NA 1909), 3000 CA Rotterdam, The Netherlands. Electronic address: cis.vrijmoeth@radboudumc.nl.
authors: Cis
authors: C
authors: Vrijmoeth
authors: Intellectual Disabilities and Health, Department of Primary and Community Health Care, Radboudumc Nijmegen, PO box 9101 (route 68), 6500 HB Nijmegen, The Netherlands. Electronic address: pleunbarten@gmail.com.
authors: Pleun
authors: P
authors: Barten
authors: Department of Primary and Community Health Care, Radboudumc Nijmegen, PO box 9101 (route 117), 6500 HB Nijmegen, The Netherlands. Electronic address: pim.assendelft@radboudumc.nl.
authors: Willem J J
authors: WJJ
authors: Assendelft
authors: Intellectual Disabilities and Health, Department of Primary and Community Health Care, Radboudumc Nijmegen, PO box 9101 (route 68), 6500 HB Nijmegen, The Netherlands. Electronic address: milou.christians@radboudumc.nl.
authors: Milou G M
authors: MGM
authors: Christians
authors: Intellectual Disability Medicine, Department of General Practice, Erasmus MC Rotterdam, PO Box 2040 (NA 1909), 3000 CA Rotterdam, The Netherlands. Electronic address: d.maes-festen@erasmusmc.nl.
authors: Dederieke A M
authors: DAM
authors: Festen
authors: Prisma Foundation Biezenmortel, Hooghoutseweg 3, 5074 NA Biezenmortel, The Netherlands. Electronic address: mtonino@prismanet.nl.
authors: Marijke
authors: M
authors: Tonino
authors: Department of Anaesthesiology, Pain and Palliative Medicine, Radboudumc Nijmegen, PO box 9101 (route 549), 6500 HB Nijmegen, The Netherlands. Electronic address: kris.vissers@radboudumc.nl.
authors: Kris C P
authors: KCP
authors: Vissers
authors: Department of Anaesthesiology, Pain and Palliative Medicine, Radboudumc Nijmegen, PO box 9101 (route 549), 6500 HB Nijmegen, The Netherlands. Electronic address: marieke.groot@radboudumc.nl.
authors: Marieke
authors: M
authors: Groot
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001291:Attitude of Health Personnel; D003142:Communication; D005260:Female; D006801:Humans; D008607:Intellectual Disability; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D009426:Netherlands; D010166:Palliative Care; D010817:Physician-Patient Relations; D010820:Physicians; D019727:Proxy; D036301:Qualitative Research; D013727:Terminal Care
keywords: End-of-life care; Identification; Intellectual disabilities; Palliative care; Physician