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Awareness about End-of-Life Care is Essential

  • Published: 2011-03-31 : Author: National Hospice and Palliative Care Organization
  • Synopsis: Private Conversations and Public Discourse is a call to action that encourages a national agenda for consumer engagement in end-of-life issues.

Main Document

Public Awareness about End-of-Life Care is Essential and Must Not be Discouraged - New Report Outlines Progress Made and Issues Call to Action.

A call to action in the form of a new report, Private Conversations and Public Discourse: The Importance of Consumer Engagement in End-of-Life Care, stresses the importance of the American public openly discussing care at the end of life.

"In the past 30 years, we've made some tremendous advances in medical care, particularly in the care of the dying. Yet, far too many Americans still suffer from unnecessary pain, discomfort and unaddressed needs at life's end," said J. Donald Schumacher, president and CEO of the National Hospice and Palliative Care Organization.

Private Conversations and Public Discourse is a call to action that encourages - and provides a framework for - a national agenda for consumer engagement in end-of-life issues. The call to action details eight specific areas that must be addressed, including:

Individuals need to talk about and document their wishes. Health care providers need to initiate honest, timely and culturally-relevant discussions with those they care for. Policy makers need to eliminate barriers that prevent timely access to hospice and palliative care. The media needs to help demystify dying and help normalize the experience for society.

The stories of Karen Ann Quinlan, Nancy Cruzan, and Terri Schiavo are shared to help paint a picture of public discourse involving death. Past efforts to advance care at the end of life conducted on the national level are also cited.

The report was written and published by NHPCO's Caring Connections, the organization's consumer engagement initiative. Funding for the report was provided by the Robert Wood Johnson Foundation, Princeton, New Jersey.

Kathy Brandt, a senior vice president at NHPCO who leads Caring Connections, stressed that "Far too many people don't have the information they need to make informed decisions about end-of-life care. We must not allow fear of the subject to discourage Americans from learning more and engaging in thoughtful discussions with family, loved ones, and healthcare professionals. The consequences of not understanding available choices are far more serious than many people realize."

Yet, it's widely acknowledged that death and dying is not a subject easily discussed by society and ongoing awareness building and education are required.

"There has been so much fear generated by rumors of 'death panels' and it's disturbing to see Americans being intentionally misled by false statements regarding care at the end of life and advance care planning," stated Schumacher. "If this report helps one individual learn more about compassionate care at life's end and puts to rest the fear tactics born out of 'death panels' we will have accomplished something."

The report points to both real and perceived barriers in people seeking quality care when facing a serious or life-limiting illness. One such example is the common misconception that a patient and doctor have "given up" when they elect hospice. Research has shown that hospice and palliative care improve quality of life and family caregiver satisfaction; and in some cases, patient lives longer than if more conventional "curative" treatments were chosen.

"The bottom line is that every single person has the right to make their own choices regarding their care when facing a serious and life-limiting illness," stressed Schumacher.

NHPCO's Caring Connections works to support these important efforts. Caring Connections was launched in 2004 and received generous funding from the Robert Wood Johnson Foundation, an organization that helped lead a national movement to improve end-of-life care in the US for almost two decades. Despite significant advancements, more work remains to be done.

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1 : Palliative Care Findings on Caregiver Depression, LGBT Partners, Moral Distress : Loyola University Health System.
2 : Defining the Changing Nature of Wisdom at the End of Life : University of California - San Diego.
3 : Blood Pressure Begins to Decline 14-18 Yrs Before Death : University of Connecticut.
4 : How Do Doctors Make Decisions When Managing Care for Critically & Terminally Ill Patients? : The Dartmouth Institute for Health Policy & Clinical Practice.
5 : Is Quebec Dr. Assisted End of Life Law Too Restrictive? : University of Montreal.
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