Hospice eNews

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

Week of January 12, 2006

…a service of Florida Hospices and Palliative Care

___________________________________________________________

INSERTING DEA IN END-OF-LIFE CARE CALLED “A BIG CHILL”

Doctors Timothy E. Quill and Diane E. Meier, writing in the current NEJM, say that “on the surface, [Gonzales v. Oregon] is about the legitimacy of physicians’ prescribing of medications under Oregon’s Death with Dignity Act and whether the federal government can overrule the states in defining ‘legitimate medical practice.’ Just beneath the surface, however, lies the risk of empowering agents of the Drug Enforcement Agency (DEA) — whose traditional role is to prevent drug abuse and diversion — to evaluate the end-of-life practices of physicians whose patients die while receiving prescribed opioids or barbiturates.” Quill and Meier say that if the US Supreme Court finds in favor of the Justice Department, not only would the Death With Dignity Act (DWD) be nullified, it would “also have a chilling effect on physicians’ willingness to treat patients’ terminal symptoms.”

The article says that the “primary concerns and greatest fears” of patients with serious illness are uncontrolled pain and “other distressing symptoms.” But in spite of advances in pain control, a “commitment by the medical profession to treat pain,” and several initiatives by states and regulatory boards to lessen “the adverse effects of regulatory constraints on symptom management,” the evidence shows justification for patients’ fears of undertreatment of pain and other symptoms.

“For better or for worse,” the authors write, “the DEA sets the tone and drives physicians’ perceptions about the legal risk associated with prescribing Schedule 2 drugs.” As a result, some physicians will not prescribe opioids, forcing their patients who need them to seek other physicians at a time of serious illness. Others are “fearful or hesitant” to prescribe, resulting in patients in pain and in need of emergency room visits or emergency consultations to get their symptoms under control.

Quill and Meier briefly track the history of the Justice Department’s efforts to overturn Oregon’s Death With Dignity Act, including the Lethal Drug Abuse Prevention Act in 1998 and the Pain Relief Promotion Act of 1999. Neither act was passed into law. In 2001, then US Attorney General John Ashcroft challenged the DWD Act again, saying that the use of Schedule 2 medications violated the Controlled Substances Act because “assisting in a suicide is not a ‘legitimate medical purpose.’” The article says that enforcement of Ashcroft’s directive “would allow the federal government to overrule established state law, empower the DEA to investigate whether a violation had occurred, and potentially open to investigation every instance of prescribing of a controlled substance for a dying patient.”

The authors conclude by saying, “This type of DEA involvement in medical practice would adversely affect far more patients than those few who seek assistance with a hastened death in Oregon. If the government thus oversteps its legitimate role and expertise, allowing DEA agents, trained only to combat criminal substance abuse and diversion, to dictate to physicians what constitutes acceptable medical practice for seriously ill and dying persons, it will undermine palliative care and pain management for the much larger number of seriously ill patients in all states. Physicians may become hesitant to prescribe the best available medications to manage the pain, agitation, and shortness of breath that sometimes accompany the end stages of illness. As a result, they may, in essence, abandon patients and their families in their moment of greatest need.”

NEJM is making available the full text of the article and an audio interview with the authors free to non-subscribers at www.nejm.org. (NEJM, 2005;354(1-3))

“CAST ME NOT OFF IN OLD AGE”

In “Cast Me Not Off in Old Age” in this month’s Commentary, online at www.commentarymagazine.com, authors Eric Cohen and Leon R. Kass examine problems and possible solutions to America’s crisis of aging. Noting that the Schiavo case illuminated the deep divisions in American thought about death and ethics, they point out the unusual nature of that case. The greatest challenges, they say, “involve not only deciding when to let loved ones die, but figuring out how to care every day for those who can no longer care for themselves.”

Americans now die in “increasingly ‘unnatural’ and surely unprecedented ways,” the authors say. Knowing when it’s “time to die” is harder than ever, yet our ancestors never faced this problem.

A coming “perfect social storm” is seen by the authors as the result of the increasing numbers of Americans who live past 65; the 40% of current deaths that follow a decade of frailty, dementia, and increased care needs; the smaller pool of family caregivers and the far-flung nature of many families; and the shortage of nurses and geriatricians. Two “solutions” present themselves, appealing to “different strains of American pragmatism,” but the authors say both are seductive and misguided.

The first approach is to “cure” our way out of the dilemmas of old age. Kass and Cohen say, “Nearly everyone in public life embraces this faith in the saving powers of medical progress, although conservatives tend to emphasize drug development and free-market medicine while liberals emphasize embryonic stem-cell research and cheap drugs from Canada.” Kass and Cohen debunk this argument by pointing out that advances in medicine lead to greater debility in old age, where “we are vigorous longer and we are incapacitated longer.” Neither is medical progress a cost saver, because more can be done and more are living longer to have expensive treatments. Third, they say, “Endless chatter about ‘healthy aging’ is at bottom a form of denial. Ultimately, the nursing home refutes the dream of limitless progress toward ageless bodies, and America will surely be building many more nursing homes in the years to come.”

The second misguided solution, Cohen and Kass write, is the “legal gospel of the living will.” The article says that though the case for them seems, at first glance, to be compelling, there is increasing evidence that in the three decades of promotion of them, “there is increasing evidence that living wills have failed” to meet their practical objectives. The authors cite several reasons why living wills do not work well, but say that the “shortcomings of living wills have still deeper roots. The animating ideas behind them – preserving autonomy until the end, giving precedence to prior wishes over present needs – are deeply problematic.” Cohen and Kass question whether adult children are simply to be executors of a parent’s wish or moral agents with their own responsibilities. Though “proxy directives” or healthcare powers of attorney are different and, the authors say, superior forms of advance directives, there exists yet another problem. “Trusting others makes sense only if there are others who are trustworthy – willing to care, able to care, wise enough to care well. Sad to say, this is often not the case – either in medicine or in families.”

The authors see great irony in the fact that we are now in the greatest need of family doctors and practitioners just as they are becoming an “endangered species,” and that we are in greatest need of families as family life is weakening. While some families are willing and able to assume the burden of elder care, others are not willing or not able and yet other elders have no family to care for them. The greatest caregiving dilemmas will be faced by the middle-class, Kass and Cohen say. These are “those who are wealthy enough to have choices … yet limited enough to make every choice a sacrifice.”

The authors examine the issue of euthanasia and mercy killing, saying that in the future, “We can expect to hear even more talk of people with ‘low quality of life,’ unworthy of the resources ‘wasted’ on them.” Traditional medical ethics has “been very clear about the duty … never to kill, always to care,” resisting the temptation to allow compassion to cause caregivers to actively hasten death. On the other hand, the authors say, those same traditional ethics have “also long taught that benefiting the life of a debilitated person still does not mean taking every possible medical action to extend it. And so, while ‘active killing’ may be incompatible with true caregiving, ‘letting die’ is always part of it.”

This, Cohen and Kass write, “is the most poignant dilemma faced by caregivers: not wishing to condemn the worth of people’s lives, yet not wanting to bind them to the rack of their growing misery; not wishing to say they are better off dead, yet not wanting always to oppose their going hither. Under these circumstances, with no simple formulas for finding the best course of action, individuals and families must find their way, case by case and moment to moment, often with only unattractive options to choose from and knowing that whatever path they choose, they will feel the weight of the path not chosen.”

The future will require increased need for social supports for families, including affordable insurance, caregiver respite relief, increased home services, better home technology for caregiving and recruitment of volunteers. But neither families nor society as a whole will have unlimited resources, especially with the increasing number of elderly people in America.

Part of the solution must be a move away from our discontent with the cycle of life, which has produced “an insatiable desire for more and more medical miracles and [created] the fantasy that we can transcend our limitations.” The life cycle has largely lost its ethical meaning in our society, as Americans “increasingly regard old age as a bundle of needs and problems demanding solution, or as a time of life whose meaning is largely defined by the struggle to stay healthy and fit.”

“Unless we learn to accept both our frailties and our finitude,” the authors say, “we are likely to find the burdens of caregiving intolerable. And unless we learn how to let loved ones die when the time comes, we will be tempted to kill—self-righteously, of course, in the guise of a false compassion”

In conclusion, Kass and Cohen say, “While there is no “solution” to the problems of old age tolerable to any civilized society, “there are better and worse ways to see our aging condition. The better way begins in thinking of ourselves less as wholly autonomous individuals than as members of families; in relinquishing our mistaken belief that medicine can miraculously liberate our loved ones or ourselves from debility and decline, and instead taking up our role as caregivers; and in abjuring the fantasy that we can control the manner and the hour of our dying, learning instead to accept death in its proper season as mortal beings replaced and renewed by the generations that follow.” (Commentary, 1/2006)

GUIDES FOR ARTIFICIAL NUTRITION AND HYDRATION ISSUED

Researchers from the University of Pennsylvania and Philadelphia’s VA Center for Health Equity Research have written an article, published in the December 15 NEJM, reviewing and clarifying the ethical principles which underlie artificial nutrition and hydration (ANH). Dr. David Casarett, professor at the University of Pennsylvania and investigator with the VA Center, says, “Re-examining the guiding principles of decisions to use ANH right now is essential.”

In the past, patients, or those making decisions for them, have been able to decide about accepting or refusing ANH based on the concepts that guide most treatment decisions: the potential for risk, possible benefits, burden, and religious and cultural beliefs.” The researchers identified five ethical guidelines which should now be used:

* Decisions about ANH should be made the way decisions about other medical treatments are made.

* The “same ethical reasoning applies whether withholding or withdrawing ANH.”

* Deciding about ANH on behalf of a patient requires “the same evidence of the patient’s preferences as is required for other significant treatment decisions.”

* “Decisions about ANH may be made without any evidence of the patient’s preferences.”

* Regardless of whether patients receive ANH, all patients should receive high quality palliative care.”

The authors say that medical and legal professional organizations and other health care organizations will need to defend “the rights of patients and families to make independent decisions about ANH and other medical treatment[s]. … Disease-based organizations can also help guarantee that all patients who forgo ANH receive high-quality, compassionate care near the end of life.” Such organizations will need to “form partnerships with legislators, payers, and regulatory agencies to promote the five recommendations.” (NEJM, 2005;353:2607-2612)

NOTES

* The number of hospital-based palliative care programs in the US increased 67% between 2000 and 2003, according to a survey by the American Hospital Association. The growth has been uneven, and “larger hospitals, academic medical centers, not-for-profit hospitals such as those run by religious organizations, and VA hospitals are significantly more likely to develop a program as compared to other hospitals.” The full article is available in the Journal of Palliative Medicine at www.liebertpub.com/jpm. (Journal of Palliative Medicine, 2005; 8(6):1127-1134)

* The Michigan firm of IPGDx has developed Prognosticheck, a “new, objective and effective test to support end-of-life patient care decisions.” Prognosticheck is “based upon an established non-invasive diagnostic technique; … captures and reports a basic level of cellular physiology,” and analysis of the data “can be used to support treatment decisions, illustrate prognosis and the timing of non-acute death.” The patented technology has complete phase I clinical trials, and the company is designing final FDA approval protocols “with notable clinical thought leaders.” (Hospital and Nursing Home Week, 1/5)

* The Hospice Letter’s “End-of-Year Survey” cited 2005’s significant developments for hospice. Among them were new regulations and reimbursement changes and increased public awareness of hospice and advance directives. (Hospice Letter, 1/2006)

* Musician and playwright Austin Sonnier’s jazz musical, “End of a Perfect Death,” tells the story of the wake and funeral of King Buddy, a fictional jazz pioneer. Sonnier says that death is prominent in the play, but the play isn’t a “heavy, philosophical lecture.” Currently playing in Lafayette, Louisiana, the play had an extended run in New Orleans and has been performed in New York, Dallas and Edinburgh. (The Daily Advertiser, 1/6)

* A Pew Research Center poll has found that increasing numbers of people are planning their own deaths and talking to close relatives about it. Twenty-nine percent of respondents indicated that they had living wills, up from 12% in 1990. Half of married respondents in 1990 indicated that they had talked with their spouse about their wishes – now 69% have done so. Seventy percent of current respondents say that patients should sometimes be allowed to die, and 22% say that doctors should “always try to save a patient’s life.” (The Associated Press, 1/5)

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.

Thanks to Cordt Kassner and Ann Jackson for contributions.