People with ID face unique barriers to hospice care

By Sandra Friedman, MD, MPH
Children's Hospital Colorado, University of Colorado
We wanted to explore the provision of palliative and hospice care for people with intellectual disabilities (ID) focusing on current practices, policies, and barriers to care.

What did you do in your research?
We searched the literature and reviewed articles pertaining to end-of-life, palliative, and hospice care for individuals with ID.

What did you find out?
There are common barriers that general population and people with ID share and include late referral to hospice, reluctance to broach subject, payment restrictions, lack of adequate resources, providers’ knowledge of hospice, carers’ familiarity with hospice, limitations of care, and ethical dilemmas related to overtreatment. However, the barriers are even greater for people with ID and include additional issues in delay in diagnosis of life-limiting condition, hospice provider’s knowledge of ID, incomplete communication of treatment options, conflicts between carers and surrogate decision makers, ethical dilemmas related to undertreatment, and challenges with informed consent.

What are the take-home messages?
There are multiple challenges to providing comprehensive end-of-life care to adults with ID. It is important to have a more collaborative approach between hospice and palliative care workers with people with ID, their families, and other important stakeholders.

To learn more about these findings contact
Sandra Friedman.

Full Journal Article
Friedman, S.L., Helm, D.T., Woodman, A.C. (2012). Unique and universal barriers: Hospice care for aging adults with intellectual disability. American Journal of Intellectual and Developmental Disabilities, 117(6), 509-532.