Attention on Medical Overtreatment Raises Awareness on Advance Care Planning, Hospice and Palliative Care

NHPCO's Caring Connections Encourages People to Learn More

(Alexandria, Va) – Recent media coverage (Associated Press 06/29/10) on the challenges patients and families face with overtreatment of a life-limiting illness brings the issues of hospice and palliative care and advance care planning to public attention.

“It’s important to remember that quality of life and a patient’s personal wishes, beliefs and values must be a factor when making care decisions brought about by a serious or terminal illness,” said J. Donald Schumacher, president and CEO of the National Hospice and Palliative Care Organization.

“Discussions helping patients and families understand the many benefits of hospice and palliative care must be more common and held long before a family faces a medical crisis,” Schumacher added.

Advance Care Planning

Advance care planning—which includes completing a living will and appointing a healthcare proxy—is somewhat like planning a road trip to an unfamiliar destination. Very few people would expect to get to a destination safely and comfortably without having a well-thought-out map in hand. Yet, it’s estimated that 70 percent of Americans have not completed a living will.

• A living will charts the course for your healthcare, letting your family and health care providers know what procedures and treatments you would want provided to you—and under what conditions.
• A healthcare proxy or healthcare power of attorney form, allows you to choose someone you trust to take charge of your healthcare decisions in case you are unable to make those decisions yourself.
• Advance directives can be changed as an individual’s situation or wishes change.

Hospice and Palliative Care

Many people mistakenly think that hospice is simply a place you go when nothing more can be done to address an illness. That misunderstanding can keep people from accessing the expert care that hospice and palliative care offers.

NHPCO reports that more than a third of hospice patients received care for seven days or less—not enough time to take full advantage of the range of available services.

Hospice and palliative care provide symptom management, pain control, and support to address emotional, psychological, and spiritual needs.

“Hospice brings patients and families compassionate care when a cure isn’t possible. Palliative care provides comfort and support earlier in the course of a serious illness and is not dependent upon prognosis,” explained Schumacher. “Together, hospice and palliative care provide solutions beyond traditional medical care. Most importantly, hospice and palliative care provide dignity at a time when it’s needed most.”

Important Facts

• Over 80 percent of hospice care takes place in the home.
• Over 1,300 hospitals have palliative care programs; many of the nation’s 4,800 hospice providers offer palliative care services as well.
• Hospice care is covered under Medicare, Medicaid, and most private insurance plans.
• Bereavement services are available to family for a year following the death of a loved one.
• Research has shown that hospice patients lived an average of 29 days longer than similar patients who did not opt for hospice care.

Learn more about advanced care planning, hospice care, and palliative care from NHPCO's Caring Connections at www.CaringInfo.org or call the HelpLine at 1-800-658-8898.

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Contact:
Jon Radulovic
NHPCO, Vice President of Communications
Ph: 703-837-3139
jradulovic@nhpco.org

Misinformation, Health Care Reform, and the Media

A Message from J. Donald Schumacher
August 14, 2009

Misinformation, Health Care Reform, and the Media

As many people know, NHPCO has been working actively to clarify misinformation among national and regional media regarding health care reform legislation. An important part of our outreach has been to correctly explain the advance care planning provision and stress the value of this benefit for all Americans.

NHPCO leadership have spoken with reporters and producers with all the major network news outlets, ABC, NBC, CBS, and CNN, as well as the Associated Press, Wall Street Journal, NY Times, Washington Post, and many others.

Some highlights include NHPCO's Kathy Brandt interview on National Public Radio's "Morning Edition" and Jon Keyserling’s interview on CNBC. NHPCO also provided information for the new feature that debuted on ABC Evening News with Charlie Gibson, "Fact Check," where the inaugural issue on this new segment was the misinformation about the advance care planning provision.

It's difficult to hear false and misleading statements in the media but rest assured that we are responding as effectively as possible. NHPCO offers some information that may be helpful. This includes:

• Talking Points on advance care planning and health care reform.
• NHPCO’s press release from August 7.
• NHPCO’s analysis about the advance care planning provision in the House’s bill.

NHPCO’s Caring Connections has some useful information about advance care planning that helps explain what it is, including a new piece that uses metaphor to explain the concepts:

• What is Advance Care Planning
• Healthcare Agents: Choosing One and Being One
• Preparing Your Advance Directives
• NEW - Are You Traveling without a Map? A layperson's guide to advance care planning (PDF)

There have been any number of excellent news reports, articles and op-eds that clarify the misinformation but those are often overshadowed by the conflict. Here are some links of interest that people may be interested in looking over:

• "Honest Talk About the End," Newsweek, by Eleanor Clift, 07/31/09.
• "Elderly Americans should read the health care bill: It won't kill them," Cleveland Plain Dealer, by Connie Schultz, 08/02/09.
• "Getting health care healthy: Accepting death outside the hospital," * Chicago Tribune, by Anne Moore, 08/05/09.
• "Health Care Reform: The Assault on Truth," AARP Bulletin Today, 08/14/09.
• “Here’s the truth, Granny,” Obit Magazine, by Judy Bachrach, 08/11/09.
• "Health Care: Will Section 1233 Hasten Patient Deaths?" American Center for Law & Justice (from Christianity Today), 08/11/09.
• "Three Myths about the Ethics of Health Care Reform," Association of Bioethics Program Directors.
• "Advance-directives section fueling concern and, hospice officials say, misunderstanding," Winston-Salem Journal, 08/13/09.
• “While others rant, hospice keeps helping,” Orlando Sentinel, 08/14/09.
• “Doctors Providing End-Of-Life Counseling See Benefit In Current Controversy,” Kaiser Health News, 08/14/09.


At NHPCO, we will continue to do our best to provide accurate information that we hope will help Americans understand the value of advance care planning.

The importance of patient wishes have always been integral to the hospice philosophy of care and we understand why the provision in the House bill would only serve to benefit Americans. We also understand how complicated and challenging issues surrounding death and dying are for many people. And when faced with what seems like sweeping change in health care reform discussions, it is understandable that many people are passionate—and frightened. Yet, I have faith that in the days ahead, the truth about caring for people at the end of life and the importance of advance care planning will begin to spread where there has been misinformation and false accusation.

To cite our outreach materials, hospice and palliative care are about how you live. Making one’s wishes know is an important part of life’s journey.

I encourage all hospice and palliative care providers to continue with the important work they do to help patients and families and their broad communities. I am proud to be working with such a dedicated community—all those providing hospice and palliative care.

Thank you.

J. Donald Schumacher
President and CEO


For more information visit, http://www.nhpco.org

Join NHPCO for Capitol Hill Day

Capitol Hill Day Registration Deadline is April 1st

Remember your first day of school? No matter at what level – elementary school or college – most people would say that they felt a combination of excitement and anxiety. There’s the fear of saying the wrong thing, or going to the wrong place. For many, the idea of visiting Capitol Hill for meetings with Members of Congress and their staff can take you back to those first days of school – regardless if it is your first time, or if you are a seasoned veteran.

That’s why NHPCO has a new and improved Capitol Hill Day program planned for this year. We want our members armed and ready to go when they head to the Hill on April 22nd.

The enhanced Capitol Hill Day is designed for everyone, at every level of the hospice community. It is a busy time on Capitol Hill. Congressional offices see hundreds of constituents each week, advocating on behalf of diverse and pressing national issues. That is why it is crucial for us to make sure that we are maximizing our opportunities to emphasize the value of hospice during Hill Day, and throughout the year. The enhanced strategy sessions for messaging and meeting preparation have been designed to give us the unique and unified presence on Capitol Hill that we need to protect compassionate and quality end-of-life care for future generations. Capitol Hill Day promises to be an interactive, educational and fun experience for attendees!

Don’t miss out on Capitol Hill Day - registration ends at midnight on April 1st. There are just two more days left to sign up for this exciting opportunity. For more information on Hill Day, go to http://www.nhpco.org/i4a/pages/Index.cfm?pageID=5809.

If you have questions or need to change your MLC registration to attend Hill Day, please contact advocacy@nhpco.org.

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For more information visit, http://www.nhpco.org

NHPCO Responds to Misleading Associated Press Quote

NHPCO Comments on Misleading Quote in Associated Press Article and Provides Helpful Information

Hospice is about Living Life as Fully as Possible

(Alexandria, Va) – The National Hospice and Palliative Care Organization wants all people to know that hospice delivers the highest quality care and services to patients and family caregivers who are coping with life-limiting illness. A recent article carried by the Associated Press (“Assisted Suicide Presents Legal Quandary,” by Greg Bluestein, 03/02/09) carries a misinformed quote from an attorney who incorrectly compared hospice to suicide. This remark was incorrect and demonstrates a lack of understanding about the hospice philosophy of care.

“Hospice compassionately cares for people who are near the close of life – but hospice isn’t about how you die, it’s about how you live. Hospice and palliative care focuses on how dying persons and their loved ones live each day, providing comfort and guidance along the way,” said J. Donald Schumacher, president and CEO of National Hospice and Palliative Care Organization. “The quote from that news article demonstrates a callous disregard for all those who receive care, including family caregivers, from our nation’s hospice programs.”

Hospice is widely recognized as the model for quality, compassionate care for people facing a life-limiting illness or injury. Hospice and palliative care involve a team-oriented approach to expert medical care, pain management, and emotional and spiritual support expressly tailored to the person’s needs and wishes. Support is provided to the person's loved ones as well.

“A common misconception people have is that hospice means you’re ‘giving up’ or ‘that there’s nothing left for the doctor to do,’ and that’s absolutely wrong. Hospice is not about giving up but is about maximizing the quality of life, no matter how long that might be,” Schumacher said.

When cure is no longer possible, hospice provides the type of care most people say they want at the end of life – comfort and quality of life. The most common statement made by families who chose hospice for their loved one is, “we wish we had known about hospice sooner.”

• Hospice focuses on caring, not curing and, in most cases, care is provided in the person’s home.
• Hospice care also is provided in freestanding hospice centers, hospitals, and nursing homes and other long-term care facilities.
• Hospice services are available to patients of any age, religion, race, or illness.
• Hospice provides bereavement support to families for 12 months following the death of their loved one.
• Hospice care is covered under Medicare, Medicaid, most private insurance plans, HMOs, and other managed care organizations
• Research has shown the Medicare beneficiaries that opted for hospice care as opposed to other medical interventions when faced with a terminal illness lived on average 29 days longer than those who did not receive hospice care.

Foundational values of NHPCO include universal access to high quality hospice and palliative care, fully informed decision-making, mitigation of unwanted suffering, non-abandonment and support for the bereaved. NHPCO would encourage all those struggling with serious and life-limiting illness to fully explore hospice and palliative care services before they find themselves in a crisis situation involving options for care of a dying loved one. To learn more about hospice and palliative care, dealing with pain, and advance care planning, visit NHPCO’s Caring Connections at http://www.caringinfo.org/oror call 1-800-658-8898.

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Note: NHPCO’s position statement and narrative on physician assisted suicide is available via the Communications section of NHPCO’s Web site.

Media Contact: Jon Radulovic

NHPCO, Vice President of Communications

703-837-3139

jradulovic@nhpco.org

For more information visit, http://www.nhpco.org