Hospice eNews

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

Week of January 30, 2006

…a service of Florida Hospices and Palliative Care

HONORING PATIENTS’ WISHES

Copley News Service released an article by Clare Howard titled, “End game: It takes a plan to avoid unwanted health care heroics.” Howard explores some of the difficulties encountered in honoring patients’ wishes. In spite of her “good understanding of durable health care power of attorney” and the legal papers she held for her brother, Howard says, it took Deb Scarliff three months of “constant daily advocacy” with hospitals and physicians to get them to do what her brother wanted all along – let him die when there was no longer any hope for recovery. A victim of liver disease, Scarliff’s brother, Eugene Altman, was being maintained on life support after other body systems failed after a liver transplant.

Meetings with the hospital ethics board to request that her brother’s wishes be honored turned into requests for “one more week,” and then “one more week.” In the meantime, her brother was mouthing, “Get me out of here.” After more than three months of steady decline in his condition, he died within minutes of his respirator being turned off. Scarliff asks, “Was this an ego thing with some doctors? Or was it because my brother was so young that they couldn’t let go? It was a wonderful teaching hospital, but this should never have gone on this long.”

The article cites examples of other patients with terminal, progressive diseases who avoid emergency room treatment for fear of being put on life support. One woman, whose father was suffering from emphysema, was pressured to allow him to be put on a respirator when what he wanted was just comfort measures. Another woman who allowed her mother to have a “temporary” feeding tube had to hire an attorney to get it removed.

Joseph Piccione, corporate ethicist at OSF Healthcare Systems, recommends that families meet with the family physician even if there is no terminal diagnosis. By reviewing all advance directives with the physician, families should be able to depend on the physician to act as their advocate during the end-of-life process. Others suggest reviewing and re-executing advance directives every five years and even more often if people move to another state. In Miami, attorney Terry Abrams Burger emphasizes the importance of the documents for everyone but says that they are “imperative for same sex couples who can be excluded from decision-making for their partner.”

Dr. Sara Rusch, who lectures annually to residents and physicians at Peoria’s OSF Saint Francis Medical Center about the authority of advance directives, stresses the importance of communication. Advance directives can have problems with too much or too little specificity, while a durable healthcare power of attorney “assures the individual’s decision will override the physician’s recommendations.” Discussing DNR orders and healthcare powers of attorney should be part of the routine of every physician, Rusch says.

Doctors’ roles in end-of-life decisions are now stressed in medical schools, one physician said. That’s different from the current customs of some physicians, who practice “patient abandonment” – treating them until the treatment is no longer effective. Piccione says, “Death is too important to reduce to a biological experience. … Technology is wonderful, but it does not recognize that dying is a fundamental part of human life.” (Copley News Service, 1/27)

EOL REFORMS AND PERSONS WITH DISABILITIES

In a recent Hastings Report article, “Recognizing Death While Affirming Life,” Adrienne Asch, bioethics professor at Yeshiva University-Wurzweiler School of Social Work, asks whether a disabled persons’ interest in continued life can be upheld by end-of-life reform. Asch says that the current framing of the end-of-life debate casts it in terms of “quality of life” versus “sanctity of life,” but that this approach both oversimplifies the issue and ignores people who largely support the end-of-life movement but have reservations on some counts.

Asch says, “Many scholars and practicing health care professionals have failed to grasp crucial insights of disability scholars or activists.” “Despite the common cause of disability scholars and activists with those in the end of life movement around maximizing self-determination and giving more respect and authority to patients in their encounters with medicine, the end of life movement has sharply differed with disability theorists and activists in understanding how illness and impairment affect quality of life,” she writes. “Disability theorists and activists endorse the growth of hospice, palliative care, pain relief, and greater attention to the psychological and social needs of patients and their loved ones; however, they argue that endorsing treatment withdrawal from people simply because their health or their capacities are impaired undermines the goals of human dignity, patient self-respect, and quality of life.”

While organizations such as Compassion in Dying and Not Dead Yet share many of the same concerns and goals, says Asch, their policies and practices differ for two reasons:

* Compassion in Dying’s “typical case” “is an elderly man or woman in the final stages of an inevitably terminal illness, who will soon die regardless of how much medical treatment is invested in his or her last days or weeks.” The typical case for organizations such as Not Dead Yet is “that of a relatively young person with a disability, who could live for several years with the condition, but who instead asks to die.”

* The two types of organizations have “profoundly different understandings of how illness and disability affect life’s meaning and rewards.”

Asch contends, “Societal tolerance of death for people who could live for months or years with disabilities stems from misunderstanding, fear, and prejudice.” She cites Robert Burt, author of Taking Care of Strangers, as saying, “Rules governing doctor-patient relations must rest on the premise that anyone’s wish to help a desperately pained, apparently helpless person is intertwined with a wish to hurt that person, to obliterate him from sight.” Such insights, Asch writes, “should prompt clinicians and policy-makers to question how truly autonomous is anyone’s wish to die when living with changed, feared, and uncertain physical impairments that lead to anguish and to interpersonal struggles with the very professionals, family members, and friends who are assumed to be supports in a time of trouble.”

In Asch’s view, Oregon’s Death With Dignity law illustrates the social, not medical, issues in requests for assisted suicide. Most Oregonians who avail themselves of the law cite “loss of enjoyable activities, loss of autonomy, and loss of dignity,” she says. “Yet these were mentally alert individuals who should have been aided by professionals and their own social networks to discern that autonomy and dignity can reside in self-expression, in determining what activities to pursue, and in obtaining the assistance to undertake them.”

Another concern of Oregon’s law is this: “When data reveal that fear of burdening others is of much greater concern to patients who seek suicide than concern about finances or physical pain, then how can professionals and families know that the supposedly autonomous wish to end life is not a response to a patient’s deep fear that she has become disliked, distasteful to, and resented by the very people from whom she seeks expertise, physical help, and emotional support? And when we learn that divorced and never-married individuals are twice as likely as married or widowed people to use physician-assisted suicide, we must ponder whether a single dying person feels especially alone and abandoned.”

Asch writes that we can better understand the reaction to Terri Schiavo’s case if we understand the concerns of the disability community about cases of alert people with “physical but not cognitive and affective disabilities.” She also says that Schiavo’s supporters “may have done damage to their efforts to join with others seeking to reform treatment of disabled or dying people.” Still, the apprehension felt in the disability community “is more understandable after reviewing a few of the many instances in which law, medicine, bioethics and government programs failed to help traumatically disabled patients discover the financial, technological, social and psychological resources that could sustain them and provide the opportunity for rewarding life.”

Asch sees no strong alliance between disability rights groups and evangelical religious groups, but maintains that disability rights groups and end-of-life reformers both “promote an emphasis on respect for the dignity and capacities of people facing illness, disability, and death.” The president of Not Dead Yet wrote, “The far right wants to kill us slowly and painfully by cutting the things we need to live, health care, public housing and transportation, etc. The far left wants to kill us quickly and call it compassion, while also saving money for others perhaps deemed more worthy.”

Asch espouses a “sensitive decision-making process” and “sound conclusions” which require several factors to be weighed and questions to be addressed:

* “What gives live meaning and value for a particular individual?”

* “What circumstances or setting would permit the ill, disabled or dying patient to derive comfort and fulfillment in existing relationships, experiences or activities?”

* Should a presumed decision-maker ever be replaced by another person in the patient’s life?

* Should life-ending decisions be influenced by any factors other than patient and family preferences?

The current push for advance directives for all Medicare patients should encourage a redesign of the forms, which now only ask which interventions are or are not desired. Questions such as which capacities a person could envision losing and still find life worth living, which activities are essential for satisfaction in life and what he/she would want done in a variety of situations would help clarify the issues, Asch writes. “Revamped advance directives and drastically revised educational materials continue to be indispensable in helping us out of the end of life care morass,” she says.

Neither society in general nor end-of-life reform has “successfully confronted the rationing question; neither has the disability rights movement or the field of disability studies,” Asch concludes. Disability activists should be included in those groups who allocate national resources for social issues, on hospital and hospice ethics committees, and among those who train physicians, nurses and social workers. “At the end of life,” Asch says, “facing decline and death, these ‘disability issues’ are issues for everyone – learning how to affirm and celebrate what gives life meaning and simultaneously acknowledge loss of capacity and eventually loss of life itself.” (Improving End of Life Care: Why Has It Been So Difficult?)

Editor’s note: This is one of a series of articles from a recent The Hastings Report, “Improving End of Life Care: Why Has It Been So Difficult?” We will continue the series as space permits.

RESEARCH AND RESOURCE NOTES

* The Journal of Palliative Medicine has made available the results of NIH’s State of the Science Conference on Improving End of Life Care, which was held in December 2004. Papers from scientists who participated in the conference are online at www.liebertpub.com/jpm. (Journal of Palliative Medicine, 2006;8(S1))

* A study published in the current Journal of the American Geriatrics Society has found that while many African Americans “are comfortable with nursing homes and hospitals,” many Arab and Hispanic Americans do not want to go to nursing homes. Hispanics are concerned about dying with dignity. Many elderly white people do not want their families to take care of them, but do want their families nearby. See the American Geriatrics Society website at www.healthinaging.org/agingintheknow/research_content.asp?id=40 for a synopsis of the study. (American Geriatrics Society Website; AScribe Newswire, 1/23)

* One of the projects of the National Association of Attorneys General is End-of-Life Health Care, which serves as a clearinghouse for state Attorneys General offices. Updated information is posted on the NAAG website at www.naag.org/issues/issue-endoflife.php. Scroll down to the bottom of the page for the January updates. (National Association of Attorneys General Website)

OTHER NOTES

* The Jack and Marie Lord Fund, established by the estate of the late Hawaii Five-O star and his wife, will generate an estimated $1.6 to $2 million per year for 12 of Hawaii’s nonprofit organizations. The largest share, about $340,000, will go to Hospice Hawaii. St. Francis Hospice Care Center is also a beneficiary. (The Honolulu Advertiser, 1/22; NHPCO Newsbriefs, 1/26)

* Hospitals are finding creative ways to attract and retain employees, including tuition reimbursement, flexible work hours and creating work environments that make employees want to stay. Sign-on bonuses are disappearing because they upset long-time employees who have given years of service. The article reviews the practices of a number of Arizona hospitals. (The Business Journal of Phoenix, 1/13)

* Representative Stephen Lynch (D-Massachusetts) wants the Institute of Medicine to “study the addictive qualities of OxyContin” to see whether it is highly addictive. If so, he wants a ban on the drug. Lynch has already filed legislation that would pull FDA approval of the drug, effectively removing it from the market. (The Boston Herald, 1/23)

* The FDA approved Pfizer Inc.’s new drug, sunitinib (Sutent), for two “hard-to-treat cancers of the kidney and stomach.” Patients with a stomach cancer called GIST were stable for 27 weeks on Sutent, compared to six weeks for those on placebo. In other studies of patients with advanced kidney cancer, 26-37% of patients had tumors which shrank by more than half. Sutent is approved for those whose cancer has not responded to Gleevec or who cannot take Gleevec. The cost of Sutent will be in excess of $37,000 per year. (Yahoo News, 1/16)

* British researchers have found that undamaged nerve fibers can cause spontaneous, ongoing pain. Previously, scientists had thought the problem lay in damaged nerve fibers. The study, which appears in the current issue of the Journal of Neuroscience, says that pain, caused by the firing of nerve cells called nociceptors, seems to be caused by nerve or tissue inflammation and dying and degeneration of nerve fibers within the nerve. (Yahoo! News, 1/25)

* A California coalition of terminally ill patients, senior citizens, physicians and others, encouraged by the recent US Supreme Court’s defeat of the Attorney General’s challenge to Oregon’s Death With Dignity law, announced a new drive to pass similar legislation in their own state. On the other hand, the Coda Alliance, a coalition focused on improving end-of-life care, is trying to reframe the debate to focus on palliative care at the end-of-life and calls physician-assisted suicide a “fringe issue.” (Business Wire, 1/24; San Jose Mercury News, 1/25)

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.