A new report, Private Conversations and Public Discourse: The Importance of Consumer Engagement in End-of-Life Care has been published by the National Hospice and Palliative Care Organization’s Caring Connections. The report provides a framework for consumer engagement in end-of-life issues and details eight specific areas that should be addressed in a national discussion, including:
1. Individuals need to talk about and document their wishes for care at the end of life.
2. Health care providers need to initiate honest, timely and culturally-relevant discussions with those for whom they are caring.
3. Policy makers need to eliminate barriers that prevent timely access to hospice and palliative care.
4. Employers need to support staff that are living with a serious illness or are caregivers or grieving.
5. The media needs to explore ways to demystify dying and help normalize the experience for the general public.
The report discusses the cases of Karen Ann Quinlan, Nancy Cruzan, and Terri Schiavo and cites past efforts to advance care at the end of life. It also addresses what barriers people find when seeking quality care at the end of life.