Palliative Care and Persons with Intellectual Disabilities

Authors: Miriam Colleran, Barbara Sheehy-Skeffington

Abstract:

Background: To explore if there are unique features in the palliative care needs of patients with intellectual disability that may impact on planning for resource and service provision for them. Aim: The purpose of this practice review is to assess the indications for, numbers of and outcomes of care for adults with intellectual disabilities referred to a specialist palliative care service over a twoyear period. Service utilization aspects considered included the frequency of home visits by a specialist palliative care doctor or clinical nurse specialist and the number of hospice admissions that occurred for the patients. Method: A retrospective review was carried out of persons 18 years and older with intellectual disabilities referred to a specialist palliative care service over a 5-year period from 30.11.3018 to 29.11.2023. A manual review was carried out of the register using key terms, namely, known residential care and community dwelling places of service providers for persons with intellectual disabilities in the area and registered diagnoses in addition to the patients known to the clinicians who had intellectual disabilities. Results: 25 referrals were made to the specialist palliative care service of 23 persons with intellectual disabilities during that time. However, this may be an underestimate. 15 women and 8 men were referred with an age range of 19 to 86 years of age. The majority had a diagnosis of Down’s syndrome or Trisomy 21. 5 patients referred did not have home visits from the specialist palliative care team. A range of 2 to 48 phone calls per person occurred by the specialist palliative care team regarding this cohort of patients. The outcomes for the patients included discharge and death. The majority of patients that died, did so in the community. One person however died in hospital. Another person died in a hospice out of area. Conclusion: Providing specialist palliative care for adults with intellectual disabilities is an important element of palliative care. The dominance of the community as the place of death for these patients and the limited number of patients dying in either hospice or hospital are noteworthy. Further research is necessary and education to inform, support, and empower specialist palliative care professionals in optimizing palliative and end-of-life care for persons with intellectual disabilities and to inform service development and provision.

Keywords: about intellectual disability, palliative care