The Hospice e-News

What the Media Said about End-of-Life Care This Week

Week of April 10, 2006

…a service of Florida Hospices and Palliative Care

SCHIAVO PROMPTS EOL INTEREST BUT LITTLE FOLLOW-THROUGH

The media has made much of the anniversary of Terri Schiavo’s death and a number of authors and editors are making the point that, for all the interest in end-of-life matters that Schiavo’s last days caused, there has been relatively little follow-through. A USA Today article quotes J. Donald Schumacher, president and CEO of NHPCO, as saying, “I fear a lot of people are just downloading these papers and then just letting them sit on their desks.”

Another aspect of the problem, USA Today says, is that people who have completed all the necessary planning still may not have their wishes followed. A March study published in the Annals of Internal Medicine found that, in hypothetical situations of terminal illness, surrogate decision-makers made decisions different from the person who played the part of the patient one-third of the time. Some reasons for this are that people don’t clearly communicate their wishes to their surrogates and families or they change their minds over a period of time. It’s also difficult to predict the exact form that a crisis might take.

Peter Ditto, a psychologist at the University of California-Irvine, and other experts say that people with advance directives and healthcare proxies should keep talking to their families and physicians about what they want and annually review and update the documents. People should also accept that others may have more information about the circumstances when the time comes for them to make the decisions and may make different ones than the patient would have imagined.

The Chicago Tribune interviewed Pat Ahern, director of Park Ridge’s Rainbow Hospice. Ahern says that Schiavo’s experience has defined what people don’t want more than what they do want. When people ask how they can make sure that what happened to Schiavo doesn’t happen to them, Ahern says, “What they mean is: How do I prevent family conflict from becoming the central theme of my dying?”

Wendy Mariner, professor of health law at Boston University, says there has been relatively little legislative activity after Schiavo’s death and that it is “in some ways remarkable” that end-of-life care laws haven’t really changed. According to Mariner, “The basic principle remains: The patient’s decision about medical treatment, whatever that might be, must be respected.” Mariner says that a “related lesson from the Schiavo tragedy is that the public doesn’t want Congress to intervene in treatment decisions.” The Pew survey found that 72% of respondents “thought Congress’ intervention in the Schiavo case was flat-out wrong.”

In The Pittsburgh Post-Gazette, Dr. Christopher M. Hughes, an intensive care physician at St. Clair Memorial Hospital, cites a Hastings Center report that declared advance directives a failure, noting that they focus on what is not wanted rather than what is wanted, they are specific to too few situations and don’t cover gray areas, too few people have them and they “are not actionable.” Hughes, along with many others, recommends the use of POLST – Physician’s Order for Life-Sustaining Treatment – which allows nurses, EMTs and other physicians to read and follow its instructions. (USA Today, 4/3; The Chicago Tribune, 4/2; The Pittsburgh Post-Gazette, 4/2)

INJUSTICE IN HEALTH CARE IS “SHOCKING AND INHUMANE”

Richard Payne, writing in a special to The Orlando Sentinel and the News & Observer of Raleigh, North Carolina, says that Martin Luther King Jr. had “strongly held views on health inequalities,” and that, if he were still alive, “He would be deeply disturbed about the state of health disparities between different racial and ethnic groups in the United States today.” Payne quotes King as saying, “Of all the forms of inequality, injustice in health care is the most shocking and inhumane.”

A recent analysis of US mortality data indicates that, says Payne, “If differences in age-adjusted mortality rates between blacks and whites were eliminated during the decade of the 1990s, nearly a million African-American lives would have been saved.” Cancer death rates have been declining for all Americans, but, Payne says, “Black men still die of this disease at 1.4 times the rate of white men.” Payne cites NHPCO statistics showing that blacks represent fewer than 10% of hospice patients, but 13% of the total population and black mortality rates are “significantly higher overall” than whites. Forty-eight million Americans are uninsured. Of these uninsured, 22% of them are African-American and 36% are Hispanic.

Payne asks if there is any doubt that King “would have been on the forefront of arguments for payment of a living wage to the working poor, and that he would have advocated for universal health care?” Payne also believes that King would have supported affirmative action, “especially to increase the ranks of African-American health care providers.”

In King’s famous “I’ve been to the mountaintop” speech, the last of his life, King told of an earlier attempt on his life when a woman stabbed him, and the knife “lodged inches from his aorta.” King was told that if he had sneezed, he would have died. Payne concludes by saying, “Americans of all races and ethnicity can truly keep King’s great dreams alive by exhibiting the courage to support adequate health care for all and by showing the strength not to sneeze in the face of these deadly health inequalities.” (Orlando Sentinel, 4/2)

RESOURCE AND RESEARCH NOTES

* A recent study analyzed the psychosocial dynamics in short hospice stays of cancer patients. The study concluded that, say the authors, “Hospice utilization is influenced by the interrelationship among patient-family-provider factors. Understanding the characteristics and needs of subgroups of terminally ill people is key to providing good care at life's end.” (Gerontologist, 2006;46(1):106-114); Mental Health Weekly Digest, 4/3)

* The Center for Health Workforce Studies says that the aging of the baby boomers will mean not only that there will be more patients, but that there will also be fewer healthcare workers. Just as the boomers get older, the older generation of physicians and nurses will also cut back on their work hours or retire. The number of new geriatric nurse specialists is declining, doctors are more likely than the US workforce as a whole to be 55 or older and older physicians don’t work as many hours as younger ones do. The report is online at chws.albany.edu. (Modern Healthcare’s Daily Dose, 4/5)

* Seven new translations of the 2000 WHO guidelines document, “Achieving Balance in National Opioids Control Policy,” have been added to the Pain and Policy Studies Group’s public access website. The Arabic, Chinese, Hindi, Indonesian, Portuguese, Swahili and Tagalog translations, as well as 14 others, are online at www.medsch.wisc.edu/painpolicy/publicat/00whoabi/00whoabi.htm. (PPSG News Alert, 4/6)

* A Price Waterhouse Coopers global survey on healthcare, delivered to a group of Arizona healthcare executives, warns that “America may be headed for an era in which it might spend more on healthcare than it does on manufacturing.” That would mean more pressure for sending jobs overseas, fewer employers offering health insurance and more uninsured people. Price Waterhouse Coopers predicts that, by 2020, more than 20% of the money spent in the US will go toward healthcare. (The Arizona Republic, 3/30)

* A prognostic index for 4-year mortality “stratifies community-dwelling older adults into groups at varying risk of mortality” and “can be helpful for clinical, health policy, and epidemiological purposes.” The index asks for responses about “age, gender, functional capabilities and comorbid illnesses” on a test self-administered by patients. Scores are obtained by simply adding up points and patients are assigned to low, medium or high risk categories. The authors say that “further studies are needed in nursing home settings and with diverse populations.” (JAMA, 2006;295:801-808)

HOSPICE AND END-OF-LIFE NOTES

* Wisconsin’s Wausau Daily Herald recently profiled the work of Fumie Katayama, a nurse from Japan who is finishing a year-long internship with four Wisconsin hospice providers. Katayama became interested in end-of-life care while working in Tokyo’s General Hospital. Home hospice care is just beginning to catch on in Japan, where nearly 80% of terminally ill patients die in hospitals. Japan is encouraging home hospice care as a more cost-effective way for its national health insurance plan to provide care. (Wausau Daily Herald, 3/25)

* New Hampshire hospitals and physicians are grappling with the issue of whether local hospital policy or state law should guide physicians issuing DNR orders. The New Hampshire house has passed a bill containing statewide guidelines for DNR orders and supporters say that it will “protect patient choices.” The Senate Judiciary Committee is now considering it, but the Catholic Diocese of Manchester has opposed the bill, saying that it “lacks protection for hospitals and residential care providers whose compliance with some do-not-resuscitate orders will violate their institutional consciences.” (Concord Monitor, 4/3)

* One of the honorees at the recent National Hospice Foundation Gala was Art Buchwald. Buchwald and his family were “recognized for recent interviews and articles telling the story of his current hospice experiences at the Washington Home and Hospice.” (National Hospice Foundation Press Release, 4/3)

* A conference on improving healthcare at the end of life, held at the Hopkins Center at Dartmouth College, had more than 200 attendees from New Hampshire and Vermont. The group “participated in a dialogue to help Congress consider the subject of living well through the last months of life.” In 2003, Congress created the Citizens’ Health Care Working Group to “engage in a public dialogue to help direct future policy” and the report is due to Congress in September. (The Union Leader, 4/1)

* Ezekiel J. Emanuel, author of the The Ends of Human Life, has written “Improving How Americans Die”in The New Republic. Since the Quinlan case, he says, there has been an extended discussion of death and dying, more attention has been paid to the symptoms of the dying and many more Americans get hospice care. There are still shortcomings – doctors who avoid discussing death, too much aggressive treatment for terminal diseases, insufficient treatment for symptoms other than pain, too little caregiver support and too few Americans with advance directives and healthcare proxies. The article is online at www.tnr.com/user/nregi.mhtml?i=w060327&s=emanuel032906. (The New Republic, 3/29)

* Though Georgia nonprofit hospitals, nursing homes and hospices do not currently pay sales or other taxes, that could change if “a bill that slipped through the Georgia General Assembly without a dissenting vote” gets signed into law. “The bill was meant to give nonprofit clinics that treat the uninsured a break from sales taxes --- the same exemption enjoyed by nonprofit hospitals, nursing homes and hospices. But the House Ways and Means Committee --- as is standard policy with any new sales tax exemption --- added a sunset provision, saying that the healthcare sales tax break would end June 30, 2008.” Lawmaker and lobbyists pledge to work together to correct “what they consider a mistake in the bill.” (Atlanta Journal-Constitution, 4/10)

OTHER NOTES

* May 15 is the due date for funding applications for both the Pain Improvement Partnership Program and the State Pain Initiative Activity program. See www.aacpi.wisc.edu for more information. (E-mail from Matt Bromley, 4/7)

* Michal Poe said her bout with breast cancer two years ago gave her the creative inspiration to write movie scripts. Inspired to write about hospice, she wrote eleven scripts about Nurse Jill, the main character in “The Good Death,” which recently debuted at a Sacramento film festival. Poe is a medical social worker at a Kaiser Permanente hospice and, after months of chemotherapy, she went back to work in hospice care. She’s writing a script for next year’s film festival. “It’s a romance,” she says, “but someone dies. Because someone always dies in the end.” (Sacramento Bee, 4/2)

* Florida’s Department of Agriculture and Consumer Services and the IRS have been asked to investigate “whether two foundations set up by [Terri] Schiavo’s parents and siblings unlawfully used charitable contributions for lobbying activity.” In The Baltimore Sun, syndicated columnist Ellen Goodman notes that since Schiavo’s death, nearly 50 bills have been filed in 23 state legislatures that would require any patient without a living will to be kept on life support. The Orlando Sentinel says, “Decide what’s best for you and your family, get it down in writing, and enjoy the rest of your life.” (St. Petersburg Times, 4/6; The Baltimore Sun, 4/3; The Orlando Sentinel, 4/2)

* Arizona’s Hospice of the Valley and the Mayo Clinic in Scottsdale are collaborating on a program that allows patients to die gracefully. In their partnership, the two support Mayo Clinic Hospital’s palliative care program and end-of-life care at Hospice of the Valley’s Sherman Home. In 2007, a medical fellowship to train palliative care doctors will begin. (The Arizona Republic, 3/13)

* Among tips for home health agency administrators who are interviewing prospective marketers is to role play a situation where the marketer tries to convince a physician who’s never heard of home care of the benefits of using it. A candidate’s “persuasiveness and resilience” are tested that way. Other tips include having applicants complete a job application “as quickly as possible” to get immediate feedback on their “sense of urgency and follow-through” and to test how they would respond to referral sources; look for promotions in their past jobs; use questions based in concrete, not hypothetical, situations; instead of asking about weaknesses, ask them to describe how they got through a difficult situation; and be prepared to convince the top candidates that your organization is the right one for them. (Home Health Line, 3/31)

* Dick Davidson, president of AHA for 15 years, will retire at the end of 2006. Richard Umbdenstock, an executive with Providence Health and Services in Seattle, has been chosen to succeed Davidson. (AHA News Now, 4/10)

Thanks to Don Pendley and Becky Anthony for contributions.

Glatfelter Insurance Group is the national sponsor of Hospice News Network for 2006. Glatfelter Insurance Group provides property and liability insurance for hospices and home healthcare agencies through their Hospice and Community Care Insurance Services division. Ask your insurance agent to visit their website at www.hccis.com.