Attitudes on Palliative Care for Adults with Developmental Disabilities

Intellectual and Developmental Disabilities (IDD) are defined as physical/mental impairments before age 18. Not only are many IDD patients living into adulthood, but deinstitutionalization has also led to most living in community settings. Little is known about end-of-life needs in these adults, and existing literature does not examine attitudes of Canadian providers. Thematic and content analysis examined attitudes of Canadian Pediatric Palliative Care (PPC) practitioners on caring for adults with IDD to identify components of care, which could be improved. An anonymized survey was created (Surveymonkey.com) using open-ended and Likert-scale questions, with thematic/subthematic coding on NVivo11. Initial coding included a codebook, which was refined. Independent coding was compared with initial coding. Coded data were reanalyzed after demographic stratification, results discussed, and consensus reached. All Canadian PPC centers responded through snowball sampling (25 of 36 [70%] practitioners). Major themes covered communication and decision making, lack of resources (including access to appropriate services), and knowledge/skill/experience gaps among adult palliative care and generalist practitioners. Gaps included complex medical conditions of IDD patients, trajectories, and related management. Knowledge ratings of adult palliative care and generalist practitioners by respondents were evenly distributed, but only pediatricians gave ratings of poor or worse. PPC practitioners are comfortable being consulted by adult palliative care and generalist colleagues. However, frequency of consults varied dramatically, from one to two times/month in British Columbia to never. PPC practitioners across Canada identified several major issues and barriers to optimal palliative care for adults with IDD.