Making End-Of-Life Decisions Is Hard On Family Members - Kaiser Health News

By Michelle Andrews

Most people would agree that when the time comes, they want a "good death." But what that means is all too often left up in the air until a crisis strikes or the stricken person is no longer able to communicate his wishes or his advance planning documents are not clear. When that happens, spouses, adult children, siblings and others find themselves in the unenviable role of surrogate decision-makers, trying to divine, sometimes with very few facts and under very emotional circumstances, what people they love would have decided to do if they were able to choose.

The critical role of the surrogate decision-maker deserves more attention and support, say experts. It's incredibly stressful -- on a par psychologically with having your house burn down, says Daniel Sulmasy, a professor of medicine and ethics at the University of Chicago Divinity School and co-author of a commentary on surrogate decision-making in the Nov. 3 issue of the Journal of the American Medical Association. Too often, hospital staff and clinicians want to move into the decision-making phase without taking into account the family members' need to come to terms with the situation, he says.

It's a role that many of us may have to step into. Only about one in four people have signed advance directives that spell out their wishes if they're unable to make medical decisions on their own, according to a 2006 report published by the Pew Research Center for the People & the Press.
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UM Panel: Rethink End-of-Life Priorities - Health - MiamiHerald.com

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As people live longer with the help of technological advances, end-of-life care will take an increasingly large bite out of the nation's healthcare budget -- unless we change the way we treat dying patients and their families, according to a panel Thursday at the University of Miami's Global Business Forum. Three medical doctors, a CEO and a professor of religious studies debated the economics and ethics of end-of-life decisions, warning that the care model historically used by the medical establishment needs to be improved in a world where there are more elderly people with more chronic illnesses. The emphasis, they agreed, should be on a team-oriented holistic approach tailored to the patient and his or her last wishes.
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Can Good Care Produce Bad Health?

Excerpts from the Amy Berman post on the John A. Hartford Foundation blog

For those of you who haven’t yet heard, I have recently been diagnosed with Stage IV inflammatory breast cancer. This rare form of breast cancer is known for its rapid spread. True to form, it has metastasized to my spine. This means my time is limited. As a nurse, I knew it from the moment I saw a reddened spot on my breast and recognized it for what it was.

My recent journey through the health care system has been eye-opening. In only a few months, I have witnessed the remarkable capabilities and the stunning shortcomings of our health care system firsthand. I am writing here because in the time I have left, I hope my story and my journey can help illustrate why some of the reforms that my colleagues and I at the John A. Hartford Foundation, as well as many others, have championed are so important.

. . .

Based on a perverse set of metrics, the Philadelphia oncologist was offering technically the “best” care America had to offer. Yet this good care was not best for me. It wouldn’t give me health. Instead, it might take away what health I had. It doesn’t matter if care is cutting-edge and technologically advanced; if it doesn’t take the patient’s goals into account, it may not be worth doing.

. . .

I was determined not only to choose treatment that would maximize the healthy time I had remaining, but also to use that time to call on our health care institutions and professionals to make a real commitment to listening to their patients. In the health policy field, we call this patient-centered care. As a nurse and a senior program officer at a health care foundation, I understood my disease and my health care options well enough to make an informed decision about my treatment.

What about the millions of older Americans facing a terminal illness or chronic disease? How can they possibly stand up to the juggernaut of our health system and say, “No. I want care that focuses on my goals, care that is centered on me.” We need to make it easier for everyone to obtain care that fits their health care goals. How can we change the system and the measurement of quality to place the patient at the center? I call on everyone involved in health care practice and reform efforts to give serious thought about how we can reorient our health care system toward patient-centered care.

Read the full post at The John A. Hartford Foundation blog

Palliative CareRresearchers Tackle Whether to Stop Statins for Terminally Ill

By Kevin B. O'Reilly, amednews staff

Patients' lives might be improved if freed of nagging side effects of the medications, but some doctors express concern about shortened survival times.

Research in palliative medicine is moving into determining what kinds of care can be withdrawn safely for patients near the end of life, say doctors behind a new research consortium.
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End-of-Life Planning Common in Long-Term Care

By Crystal Phend, Senior Staff Writer, MedPage Today

Advance directives are common among long-term care residents, particularly those discharged from hospice, a CDC report found.

There was an advance directive on record for 28% of home healthcare patients, 65% of those at nursing homes, and 88% of hospice patients, according to an analysis of data from the 2004 National Nursing Home Survey and the 2007 National Home and Hospice Care Survey.

These rates compare very favorably with the 5% to 15% rate among adults overall in the U.S., Adrienne L. Jones, and colleagues at the CDC's National Center for Health Statistics in Hyattsville, Md., noted in the report.

But, they wrote, there's still room for improvement.

The most common forms of advance directives noted in the surveys were living wills and do-not-resuscitate orders.

The likelihood of having any type of advance directive appeared to differ by age and race or ethnicity.

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Fewer African Americans Plan for End-of-Life Care - AARP Bulletin

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by: Cynthia Ramnarace | from: AARP Bulletin

Older African Americans are less likely to have a plan for their end-of-life care than their white counterparts, a discrepancy that leaves blacks with less control over their final health care choices.

In the first national analysis of racial discrepancies in end-of-life planning, the National Center for Health Statistics reported Jan. 6 that African Americans in home health care and nursing homes were half as likely as whites to have an advance directive such as a living will or a do-not-resuscitate (DNR) order.

Experts say this disparity means African Americans are more likely to endure unwanted medical procedures and experience unnecessary pain and family strife.

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Making the Most of Washington’s Change of Mind on End-of-Life Planning

excerpt from Transcend Hospice Marketing Group blog

Donald Schumacher, president and CEO of the National Hospice and Palliative Care Organization, said, “By having Medicare cover these voluntary consultations, beneficiaries will be able to get information that will help them make their own decisions about their care and what they would or would not want at life’s end.”

While we may not have predicted a change of mind regarding the end-of-life planning provision in Medicare legislation, this recent turn of events underscores the vital importance of hospices teaching their local communities the truth about the benefits of hospice care. While Medicare may not be facilitating advance care planning, there’s nothing stopping hospice organizations from stepping to the plate and engaging their local communities in conversations about options for care and support and the end of life. Go take advantage of the opportunity!

Transcend Hospice Marketing - Making the Most of Washington’s Change of Mind on End-of-Life Planning

Obama to Enact End-of-Life Planning for Medicare - NYTimes.com

Image via WikipediaBy ROBERT PEAR

When a proposal to encourage end-of-life planning touched off a political storm over “death panels,” Democrats dropped it from legislation to overhaul the health care system. But the Obama administration will achieve the same goal by regulation, starting Jan. 1.

Under the new policy, outlined in a Medicare regulation, the government will pay doctors who advise patients on options for end-of-life care, which may include advance directives to forgo aggressive life-sustaining treatment.

Congressional supporters of the new policy, though pleased, have kept quiet. They fear provoking another furor like the one in 2009 when Republicans seized on the idea of end-of-life counseling to argue that the Democrats’ bill would allow the government to cut off care for the critically ill.

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Personal Health - New York Law Encourages Frank Talk on Palliative Care - NYTimes.com

Image via CrunchBaseby Jane Brody

Legislators have begun to recognize the medical, humanitarian and economic value of helping terminally ill patients and their families navigate treatment options as they approach the end of life.

Last week, over the objections of New York State’s medical society, Gov. David A. Paterson signed into law a bill — the New York Palliative Care Information Act — requiring physicians who treat patients with a terminal illness or condition to offer them or their representatives information about prognosis and options for end-of-life care, including aggressive pain management and hospice care as well as the possibilities for further life-sustaining treatment.
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Study Suggests Doctors Overlook Effects Of Implanted Heart Defibrillators In Dying Patients

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(Medical News Today) The Associated Press reports that heart defibrillators implanted in a patient's chest may disrupt a quiet death, but doctors and relatives of people dying of non-heart related diseases often don't consider that issue. "It's not unusual for health professionals to avoid the topic, says Dr. Nathan Goldstein of New York's Mount Sinai Medical Center. His research, published this month in Annals of Internal Medicine, suggests most hospices - expert in end-of-life care - aren't making defibrillator decisions part of their routine." The devices can cause "painful, repeated shocks" in some patients if they are not turned-off. "Nearly 60 percent of hospices he examined had at least one patient shocked within the past year, sometimes multiple times at once. Yet just one in 20 hospices had a method even to identify who harbored the implant when they entered the program. But with more than 100,000 implantable cardioverter-defibrillators, or ICDs, inserted every year, more and more families ... will face the question" (Neergaard, 3/15).
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