Where the nation stands on end-of-life care

The National Hospice and Palliative Care Organization (NHPCO) has published a report about end-of-life care, emphasizing the importance of more personal and private discussions about the topic.

"Private Conversations and Public Discourse: The Importance of Consumer Engagement in End-of-Life Care" is a call to action, NHPCO says. It provides a framework and national agenda for consumer engagement in end-of-life issues.

The report details specific areas to address, including the following:

• Individuals need to talk about and document their wishes for care at the end of life.

• Health care providers need to initiate honest, timely, and culturally relevant discussions with those for whom they are caring.

• Policymakers need to eliminate barriers that prevent timely access to hospice and palliative care.

• Employers need to support staff who are living with a serious illness or are caregivers or grieving.

• The media needs to explore ways to demystify dying and help normalize the experience for the general public.

The report highlights the stories of Karen Ann Quinlan, Nancy Cruzan, and Terri Schiavo. All three women died after prolonged life-sustaining treatment, and in each case their treatment and eventual deaths brought national media attention to end-of-life decisions and advanced directives.

The report was written and published by NHPCO's Caring Connections, the organization's consumer engagement initiative that provides free information on care, caregiving, and community engagement. Funding for the report was provided by the Robert Wood Johnson Foundation of Princeton, NJ.

Death issues are sometimes ignored and other times become part of polarized debate in American society. One example is the anger generated in the summer of 2009 over the rumors of death panels dictating American health care decisions under health care reform. More education and open discussions are needed, according to NHPCO.

Caring Connections, launched in 2004 through Robert Wood Johnson Foundation funding, works to support these important efforts. The report details real and perceived barriers in people seeking quality care when facing a serious or life-limiting illness. For example, there is the common misconception that a patient and doctor have "given up" when they elect hospice. Studies of hospice and palliative care have shown that these types of care can improve quality of life and family caregiver satisfaction. There are even some cases in which patients live longer than if more conventional treatments were chosen.


To encourage private conversations about end-of-life care, access:

"Private Conversations and Public Discourse: The Importance of Consumer Engagement in End-of-Life Care" is available as a free download at the Caring Connections web site at CaringInfo.org. Click on the report's title link, which is underlined in the top right corner of the home page.