Aging and End of Life

We have taken initial steps in our research project on end of life issues for people with DD.  A thorough review of end of life and palliative care literature with respect to individuals with DD and their family caregivers was completed.  As a result of this review, a pilot survey was developed and administered with family medicine residents and faculty in spring 2012.  It addressed physicians’ comfort, knowledge, and skills when caring for adults with and without a disability. The survey questions addressed multiple themes: communicating about end of life care, providing support to the patient and family, palliative care, consent to treatment or no treatment, dying process, and community resources. Based on the results, a revised survey is being developed.  This survey will be shared with hospice programs statewide in Fall 2012 and input will be requested.