The Hospice e-News

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

Week of March 20, 2006

…a service of Florida Hospices and Palliative Care

AUTHORS RETHINK EOL CARE ASSUMPTIONS

In the last article from the recent The Hastings Report, authors Thomas H. Murray and Bruce Jennings “synthesize and discuss many of the insights and arguments” of the previous articles and draw some lessons about the future direction of reforming end-of-life care. Murray is president of The Hastings Center and Jennings is a senior research scholar at The Hastings Institute and also teaches at Yale University School of Public Health.

Murray and Jennings cite the Cruzan case as establishing the right to refuse medical treatment, but, they say, “It did not settle the moral question of how and when this legal right should be exercised, nor did it lessen the gap between the theory of how end of life decisions should be made and the practice of how such decisions actually are made at the bedside.” They make a plea for end-of-life advocacy that grounds “its ethical arguments in the best and most objective understanding of medical facts available.” They challenge the movement to “remain dynamic, flexible, and open to new ideas and to conversation with new voices.” “Reasoned discourse, pragmatic improvement and respect for civil rights and human dignity” they say, “must be the hallmarks of end of life care reforms in the years ahead.”

Three things have gone wrong in end-of-life reform, the authors assert. First, “most people would prefer not to stare death in the face – at least not their own.” Second, while it was once “widely believed” that there was a consensus on how to make end-of-life decisions, it is not now, and maybe never was, “universally shared.” And third, the consensus that is supposed to exist “is based on several profound misconceptions and oversimplifications.”

* “Our approach to end of life decision-making has been excessively rationalistic.” Our logical attitudes toward future planning do not translate well into action even in our own country, much less in other traditions and cultures.

* “Our approach to end of life decision-making has been excessively individualistic. … The fact is, we die, as we live, in a web of vital and complex relationships. What happened in life, and what happens in dying, is shaped by and shapes those relationships.”

* “We have assumed that inappropriately aggressive and unwanted treatment at the end of life is fundamentally a problem of prognostic uncertainty and poor communication.” The fundamental problem may be that acute care hospitals are “oriented toward using life-sustaining equipment and techniques, not toward forgoing them.” The system, say Murray and Jennings, “is remarkably resistant to change.”

Changing the system will require “a forceful response” to several challenges.

* Health professionals must be educated and motivated, institutions adapted, and financial incentives realigned so that, as Joanne Lynn said, “just about the right services will be in place and just about the right things will happen for patients, because they are ‘built into the system.’”

* A new consensus on end-of-life care must be created that reaches “across color, class, disability and moral convictions” and “takes into account feelings of mistrust and lived experiences of unequal treatment.”

* “We must rebuild, reinforce and reinterpret our laws, institutions, and practices around the acknowledgment that dying is an interpersonal affair, that it is not undergone strictly by individuals.” Murray and Jennings cite hospice as an example of this, and says that healthcare proxies can be looked at in the same way.

The authors see several areas of thinking and practice that should be considered to “put end of life care on a new and better course.”

* End-of-life care should be approached from “more of a policy- and population-based perspective, not simply from a clinical one.”

* Advance directives and surrogate decision-making should be reevaluated. “Advance directives should be more adequately and routinely factored into information and decision-making systems that physicians are comfortable with.” The system should “more easily accommodate” the role of appropriate family members. “Surrogates named in advance directives and other family members should be given adequate information, counseling and support.”

* When families have disagreements and conflicts, “independent mediation and conflict resolution services, including pastoral counseling, should be readily available in health care institutions.”

Murray and Jennings say, “Further progress in improving end of life care does not depend primarily on enacting new laws or regulations,” since most existing laws will work. Besides, “if anything, end of life care reform in the past has been excessively driven by law. Culture needs time to catch up.”

The authors conclude by saying, “As we shift from legal to cultural means of change, so too should we move from a focus on procedure and process to a focus on the substantive arguments and values that tell us what to decide, not just how to go about deciding. We must talk about what we dare not name, and look at what we dare not see. We shall never get end of life care ‘right,’ because death is not a puzzle to be solved. Death is an inevitable aspect of the human condition. But let us never forget: while death is inevitable, dying badly is not.” (Improving End of Life Care: Why Has It Been So Difficult?; National Consensus Project Website)

Editor’s note: This is the last of a series of articles from a recent The Hastings Report, “Improving End of Life Care: Why Has It Been So Difficult?”

RESEARCH AND RESOURCE NOTES

* An article originally published in the Journal of the American Board of Family Medicine says, “A recent meta-analysis demonstrates a robust but small association between weekly religious attendance and longer life.” Attending religious services weekly accounted for 2-3 additional life years, physical exercise 3-5 life years and taking statin-type agents, 2.5-3.5 life years. The article concludes that “religious attendance is “not a mode of medical therapy, but these findings warrant more and better quality research designed to examine the associations between religion and health, and the potential relevance such associations might have for medical practice.” (Medscape, 3/7)

* A National Institute on Aging study, conducted by the University of Michigan, found that six months after the death of a spouse, nearly half the elderly survivors had few symptoms of grief, and 10% had cheered up. Rutgers University sociologist Deborah Carr says, “Until recently, mental health assumed that persons with minimal symptoms of grief were either in denial, emotionally distant or lacked a close attachment to their spouse. … These findings provide strong evidence that men and women who show this resilient pattern of grief are not emotionally distant or in denial, but are in fact well-adjusted individuals responding to loss in a healthy way.” (MSNBC Website, 3/14)

* A report from the National Association of Social Workers says, “An impending shortage of social workers threatens future services for all Americans, especially children and older adults.” The full report can be read or downloaded at workforce.socialworkers.org/studies/fullStudy0306.pdf. (Philanthropy News Digest Website, 3/18)

* The Montana End of Life Registry, an online database for living wills required by a 2005 law, is in operation at https://app.mt.gov/registry. State residents can download a form from the state attorney general’s website, have it signed by two witnesses and mail it back to the AG’s office, where it is scanned and placed in the database. (AP, 3/15)

* The new Census Bureau report, “65+ in the United States:2005,” is available at the Bureau’s website, www.census.gov/newonsite. The report finds improving health for older Americans, but says that obesity is a growing problem. Deaths from heart disease have dropped for those over 65, from 63% t0 46%. (US Census Bureau Website, 3/9; The Arizona Republic, 3/10)

AGING NOTES

* Scientists at a recent conference at Oxford University rejected the idea that our lifespans have some built-in limits. Paul Hodge, director of the Harvard Generations Policy Program, says, “Life expectancy is going to grow significantly, and current policies are going to be proven totally inadequate.” Aubrey de Grey, a Cambridge University biomedical gerontologist, believes that the first person to live to be 1000 years old has already been born. De Grey says that the aging process may eventually be stopped entirely by using stem cells, gene therapy and other techniques. (Yahoo! News, 3/15)

* The New York Daily News says that the good news and the bad news is that modern medicine helps us live longer. Many elderly people will receive aggressive interventions that will extend their lives, but not necessarily happy ones – they’ll be going back to the nursing home, or living with whatever sent them to the hospital to begin with. Dr. Joanne Lynn, president of Americans for Better Care of the Dying, says that the motive isn’t compassion, it’s economics. “Medicare pays reasonably well for procedures and hospitalizations,” Lynn says, but it usually doesn’t pay for caregiver services, nor for end-of-life education where persons could discuss their options with their physicians and say what kind of death they really want. (The New York Daily News, 3/15)

PUBLIC POLICY NOTES

* The American Medical Association warned last week that if the federal government proceeds with planned reimbursement cuts, many doctors will stop seeing new Medicare patients or will decrease the number that they see. The AMA wants a change in the formula used to reimburse physicians, which calls for a 4.6% cut next year. (AP, 3/16)

* The Minnesota House Health Committee has passed a bill requiring nutrition and hydration for patients unable to make their own healthcare decisions. The bill provides exceptions if “food and water would not contribute to keeping the person alive or would not provide the person comfort,” if the person has advance directives specifically allowing the withholding or withdrawal of nutrition and hydration, or if there is “clear and convincing evidence” that the person, while competent to do so, had authorized withholding or withdrawing food and water. The Pioneer Press article says that the bill is likely to pass the full house, but that its future in the Senate is not clear. (Pioneer Press, 3/15)

* So far, California has been the only state to legislate minimum nurse-patient ratios in hospitals and there has been conflict about it since the outset. Other states are moving in that direction, with a similar bill introduced into the Illinois legislature. In Massachusetts, one bill calls for minimum nurse-patient ratios, while another, supported by the Massachusetts Hospital Association, requires “public disclosure of nurse-staffing formulas, nursing hours per patient day, and outcomes of nurse-sensitive quality measures.” (Modern Healthcare, 3/13)

OTHER NOTES

* Seattle Weekly columnist Knute Berger says, “It’s only a matter of time that in this biomedically advanced corner of the country we’ll take the plunge” and approve a physician-assisted suicide law in Washington state. Berger says “It may take a while,” but that “gives people time to study the issue. It’s good to think hard about such laws. They can have profound implications.” Berger recommends two self-published books by local doctors that explore the role of physicians in end-of-life care: The Good Doctor Naked, by Robert Hardy Barnes, and Patient Directed Dying, by Tom Preston. (Seattle Weekly Website, 3/15)

* The Nurse Alliance of the Service Employees International Union (SEIU) is a new national group formed to “protect the interests of health care workers who are coping with a labor shortage within their profession.” SEIU will invest $6 million in the new group this year, which has 84,000 members, and will also provide long-term financial support. RNs Working Together is a group of 200,000 nurses from eight AFL-CIO unions and the California Nurses Association/National Nurses Organizing Committee represents about 70,000 RNs. (AP, 3/9)

* Speaking at the University of Pennsylvania, NHPCO president J. Donald Schumacher said that hospice care has grown rapidly and that the “challenge will be to maintain quality care under more regulation and financial pressure.” A second big challenge is “getting hospice services to dying people sooner.” (The Philadelphia Inquirer, 3/17)

* On the Renew America website, Kevin Fobbs calls on Americans to pledge to support a resolution in every state called “Terri’s Day – A Celebration of the Culture of Life.” Around the March 18 anniversary of Schiavo’s death, a number of articles appeared, several about the publication of A Life That Matters, by Schiavo’s parents and siblings. Pinellas Circuit Judge George Greer, who presided over the Schiavo case, will appear later this spring on a panel, “The Legacy of the Terri Schiavo Case: Why Is It So Hard to Die in America?”, sponsored by the University of Pennsylvania Center for Bioethics Symposium. (Renew America Website, 3/13; St. Petersburg Times, 3/14))

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