Providing palliative care to people with intellectual disabilities: services, staff knowledge, and challenges

People with intellectual disabilities require access to compassionate, quality, and effective palliative and end-of-life care when facing serious, life-limiting illness. This study was designed to document the degree to which hospice and palliative care services were provided to New Jersey residents with intellectual disabilities, and the challenges in providing this care. Surveys were designed to assess the provision of hospice and palliative care services to this population, staff knowledge and training needs, experiential and communication challenges, and financial concerns. Twenty-two hospice and palliative care providers, 50 group home/community living sponsors, and 5 state-run developmental centers completed this survey. Twenty-two percent of group home sponsors and 60% of developmental centers report ever using hospice services, with 1-2 residents using hospice care during the previous year. Ninety-one percent of palliative care providers reported providing services to the community, with hospices providing care to approximately 3 individuals during the prior year. Challenges to providing services included: low levels of knowledge about palliative care among residential providers; need for knowledge about people with intellectual disabilities among hospice providers; communication difficulties; and costs concerns regarding reimbursement, staffing, and training. Results support the need to increase awareness and knowledge about intellectual disabilities, including provider communication skills; promote hospice outreach to residential providers; and develop innovative services and policies that address the challenges in caring for this population.