The Hospice e-News

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

Week of February 27, 2006

…a service of Florida Hospices and Palliative Care

REAPPRAISING LITIGATION IN END-OF-LIFE CARE

In “The Role of Litigation in End of Life Care: A Reappraisal,” Alan Meisel, professor of law and ethics and director of the Center for Bioethics and Health Law at the University of Pittsburgh, examines the limits and possibilities of litigation in shaping and controlling end-of-life care. “Lessons abound of litigation that has not brought about the anticipated benefits,” Meisel says, citing as examples school desegregation, police misconduct during investigations and the problems of end-of-life decision-making.

Meisel writes, “Our assumptions about litigation – that it provides a resolution to individual and social problems, that this resolution is final and uncontestable, and that there are no other last resort mechanisms for resolution – are largely unsustainable.” While arguing that litigation has a place in medical and end-of-life care, Meisel notes a number of limits. Speaking from the standpoint of jurisprudence, he asserts that any judicial decision applies only to the case in which it is issued. Everyone else may ignore or even defy it without threat of legal reprisal. Additionally, in every case in which the court writes an opinion (and it may write multiple opinions – the Cruzan case had four), more questions are raised than answered. Lastly, only the “holding” part of the opinion is legally binding, while everything else is dicta, or judicial comment that is not precedential.

There are many other limits to litigation, which add “trial to tribulation, both literally and figuratively.” The costs, of many kinds, cannot be known in the beginning. Relationships can be shattered and, though a pronouncement is made which must be followed, “acrimony is beyond the scope of litigation to repair.”

There are also practical limits to implementing case law, Meisel says. People who need to know about the holdings in a case learn about the information in a variety of ways, passed from person to person and modified much as the message in a children’s game of “telephone.” Health professionals may not agree with the law and may strongly resist applying it.

Litigation also has costs and dangers when used to define and drive an agenda. Some of those costs are borne by the individuals involved, but society at large is also affected.

* Healthcare professionals, especially physicians, can feel imposed upon by outside forces and by what they see as a “rival” profession – the legal one. Also, “this outside imposition has often conflicted with the ethics, ethos, customs, and deeply held values of the health care professions, or at least of individual clinicians.”

* Courts are often “nonmajoritarian,” while legislatures represent the majority of the people. Legislatures can also engage in fact-finding activities denied the courts. The courts themselves have often pointed out that “it would be better if a comprehensive resolution were prescribed legislatively.

* Judicial law-making is done by the elites and the content has been shaped by other elites testifying in the cases. But the elites are not the ones who bear the brunt of the decisions. The persons involved are the ones in the trenches, making the decisions about care and providing support. They may not even be aware of the nuances of the law. “It should not be surprising … that the law is so foreign to – and thus resisted by – the troops in the field.”

* Judicial consensus regarding end-of-life decision-making is based on “a reasonable, but nonetheless questionable, assumption … that, at or near the end of life, people prefer dying a peaceful, nonmedicalized death to eking out a few additional days or weeks or months sustained by high-tech medical interventions.” While most people want this, Meisel says, not everyone does. One part of the population believes that life must be preserved at all costs, while another believes that quality of life is “irrelevant to the decision” and may result in discrimination on the basis of disability.

Meisel says that other options to effect larger social change exist. Legislation, better regulations from administrative agencies and better enforcement of the existing ones are among them. Meisel sees the possibility that post-Schiavo legislation “may roll back the consensus that has been carefully and deliberatively crafted over the past thirty years.” Because of that, “litigation may continue to be the change agent of choice.”

The goals of such an agenda are several, particularly if the point is to “effect change in the law – not merely answer a narrow question.”

* With the current consensus on end-of-life under attack from several sides, state-wide efforts need to be made to strengthen that consensus. In some states, the highest court needs to articulate that competent persons have the right to forgo medical treatments and incompetent ones have the right to have close family members decide for them. In other states those rights are not state law. In still others, ambiguities in the laws limit the effectiveness of end-of-life documents.

* Some “settled” laws have ambiguities which need to be clarified, among them the definition of “clear and convincing evidence.”

* Court decisions must be grounded in the state or federal constitution lest they be subject to nullification by state legislatures.

* Autonomy has been central to the issue of decision-making at the end of life. Meisel cites two competing values – “economic justices and the interests of other concerned persons” as forces that should be brought to bear on the thinking of the courts.

* The economic realities that bear on end-of-life decision-making form a “contentious issue” that legislatures “are unlikely to take on.” The issue has been largely unaddressed, and “to address it better will require an increased awareness of the role that justice might play in end of life decision-making.”

* Healthcare personnel have a stake in end-of-life decision-making, but “courts have almost uniformly rejected these considerations as not worthy of consideration, because they are antithetical to patient autonomy.” Even more ignored than healthcare professionals are the voices of others who give care to terminally ill patients – aides, orderlies, etc. “This is especially true in long term care facilities, where strong emotional bonds are perhaps more likely to develop between caregiver and patient.”

* Family relationships “should be defined more in terms of social realities than formal relationships. “Crafting law that gives consideration to the interests of these individuals is a daunting task, but to ignore them completely is unjust and can give rise to the kinds of conditions that created and perpetuated the conflict in Schiavo.”

In conclusion, Meisel writes, “The moral of the tale is consistent with what is known of litigation in other spheres: litigation has significant limits as an instrument of systematic social change. While it would be naïve to advocate that litigation not continue, we must try to use other means of social change. Perhaps we need to pay more heed to judges’ pleas that legislatures address end of life issues. Our first priorities might be to support better statutes on advance directives – such as the adoption of the Uniform Health Care Decisions Act – and to focus on the use of adequate treatment of pain. However, in the current climate, if the goal is to preserve the consensus about end of life decision-making, it may turn out that what we need is not an alternative to litigation, but a smarter litigation strategy.” (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.

INTENT IS IMPORTANT IN END-OF-LIFE DECISIONS

The Winston-Salem Journal is publishing a three-part series on end-of-life decision-making. The three parts addressed are “life versus death; the continuation of life; and who will represent our medical wishes if we’re unable to do so?” The first article, written by elder law attorney Jan Warner, deals with life versus death.

Warner briefly recounts the Nancy Cruzan case, in which the US Supreme Court held that if there was “clear and convincing evidence” of a patient’s intent, artificial life-supports could be withdrawn. States, through the use of advance directives, can set the parameters within which healthcare agents can make decisions for patients no longer able to decide for themselves.

There are two circumstances in which written directions regarding end-of-life treatment are applicable. The first circumstance is that the patient has a terminal condition, usually defined as “an incurable or irreversible condition that, within a reasonable degree of medical certainty, could cause death within a reasonably short time if life-sustaining procedures that prolong the dying process are not used.” The second circumstance is that the patient is “permanently unconscious” or in a persistent vegetative state, which “generally means that the individual is in an irreversible condition with no awareness of self or surroundings.”

Warner says there is a legal difference between “’life-sustaining medical treatments’ (such as respirators), and providing hydration and nutrition through surgically implanted tubes.” He illustrates the difference by pointing out that at first, Cruzan had both a respirator and a feeding tube. The respirator was removed, and Cruzan breathed on her own. When her parents asked that the tube be removed, the hospital refused, and the case went to court. The Supreme Court decision dealt with the feeding tube, not the respirator. (Winston-Salem Journal, 2/19)

RESEARCH AND RESOURCE NOTES

Several state summits on preparing for a possible avian flu epidemic will be held in the coming weeks. More information is available on the official federal government site on pandemic and avian flu. The site has information on federal, state and local planning and response activities, how individual families should prepare, and what businesses, schools, healthcare providers and community organizations should be doing. Not all pages are complete, so check back often at www.pandemicflu.gov. (US Government Pandemic Flu Website)

* The Life Management Website has a section especially for elders, Next Steps. Next Steps, at www.lifemanagement.com/nextsteps, covers such topics as “long term care and long term health care, Medicaid qualification, a patient's rights in nursing homes and hospitals, discharge and transfer issues, senior care, nursing home care, estate planning, retirement planning, health care planning, planning for incapacity, special needs trusts, protecting assets and much more.” (Life Management Website)

* Growth House is sponsoring a blogging portal dedicated to quality improvement in end-of-life care. Featured bloggers include David Weissman, Drew Rosielle, Ernestine Pantel, Jack Freer, James Hallenbeck, Jennifer Stevens, Joanne Lynn, Les Morgan, Susanne Carpenter and others. The site also contains a news section and several book recommendations. (Growth House Website)

* The results of the “2005 State of Chronic Pain in Ohio” survey are available on the Ohio Pain Initiative Website, www.ohiopaininitiative.org. Survey data show that 10% of Ohio households have a family member with a medically diagnosed chronic pain condition and the average intensity of their pain is six on a ten point scale. (Ohio Pain Initiative Website)

* A recent study says that “mindfulness-based stress reduction (MBSR) and massage may be useful adjunctive therapies for chronic musculoskeletal pain.” The study, originally published in the Journal of General Internal Medicine, says that MBSR “may be more effective and longer-lasting for mood improvement while massage may be more effective for reducing pain.” (Life Science Weekly, 2/28)

OTHER NOTES

* Last year’s 2006 workplan for the IRS says the agency will “focus on the executive compensation practices as well as the community benefit compliance of a reported 600 tax-exempt hospitals.” Other previously announced initiatives concerning the tax exempt status of healthcare organizations will be continued in the coming year. According to Michael Peregrine, an attorney with McDermott Will & Emery, “the multifronted assault on not-for-profit hospitals is partly driven by government officials angry at perceived abuses of tax exempt status and hungry for tax revenue in an era of state and federal budget cuts.” (Modern Healthcare, 2/20)

* Marcia Glover Banks, terminally ill with cancer, and her three daughters have recorded a song that they wrote, “A Family’s Love.” Brooke Carroll, a music therapist with Samaritan Hospice, came up with the idea and plays the keyboard for them. “It’s not just about when she’s gone,” Carroll said, “but a way to celebrate their love for each other now.” (The Philadelphia Inquirer, 2/23)

* Eight AFL-CIO unions will contribute money and coordinate a campaign to increase healthcare organizing. The unions have previously lobbied together, but this is the first joint organizing effort. The unions included are United American Nurses, United Nurses of America/American Federation of State, County and Municipal Employees, Health Professionals and Allied Employees/American Federation of Teachers, American Federation of Government Employees, Communications Workers of America, Office and Professional Employees International Union, United Auto Workers, and United Steelworkers. (Modern Healthcare’s Daily Dose, 2/23)

* The battle over Terri Schiavo is continuing in the nation’s bookstores. Michael Schiavo has written Terri: The Truth and the Schindler family has penned A Life That Matters: The Legacy of Terri Schiavo – A Lesson for Us All. Both books will be released next month. . (The Philadelphia Inquirer, 2/19)

* WAMU, University Radio, in Washington, DC, featured a program with Art Buchwald on 2/24. Buchwald, who was interviewed by Diane Rehm, is now a patient at the Washington (DC) Home and Hospice. Buchwald shares his reflections on his life and his choice to elect to receive hospice care. “I’m having the time of my life,” says Buchwald of his time with hospice. Seeing his friends, eating what he wants and being with his family are all meaningful to him. “If you have to go,” says Buchwald, “the way you go is a big deal.”

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.