Hospice eNews
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What
the Media Said about End-of-Life Care This Week
Week of April 4, 2005
…a service of
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NEJM SEEKS TO
INFORM CURRENT DEBATE ABOUT EOL ISSUES
NEJM issued an early release, on its website, of two articles that will not be in print until the April 21 issue. “‘Culture of Life’ Politics at the Bedside – The Case of Terri Schiavo” is by George J. Annas, JD, MPH. “Terri Schiavo – A Tragedy Compounded” is written by Timothy E. Quill, MD.
Annas writes that he took the “culture of life” phrase from President George Bush’s statement as he signed the legislation that allowed the federal courts to review Terri Schiavo’s case. Annas says the term is a “not-terribly-subtle reference to the anti-abortion movement, and that that movement may not view itself as strong enough to … require that incompetent patients be kept alive with artificially delivered fluids and nutrition.” Annas reviews the cases of Karen Ann Quinlan and Nancy Cruzan to examine “legal background information that has been ignored by Congress and the President.” He then reviews the Schiavo case as it stood upon publication of his article.
Annas says that despite the publicity that attended the Quinlan, Cruzan and Schiavo cases, “conflicts involving medical decision making for incompetent patients near the end of life are no longer primarily legal in nature, if they ever were.” When physician and family or members within a family disagree, others, up to and including the courts, get involved. “There is (and should be) no special law regarding the refusal of treatment that is tailored to specific diseases or prognoses, and the persistent vegetative state is no exception.” Annas says that “erring on the side of life” may result in the violation of a person’s body and dignity “in a way few would want for themselves,” and that “erring on the side of liberty – specifically, the patient’s right to decide on treatment – is more consistent with American values and our constitutional traditions.”
Annas
concludes by citing a
Quill’s article says, “The right of competent patients to refuse unwanted medical treatment, including artificial hydration and nutrition, is a settled ethical and legal issue in this country – based on the right to bodily integrity.” He cites the Cruzan case as supporting the right of surrogate decision makers to exercise that right for incapacitated persons, noting that it left it to the states to “set their own standards of evidence about patients’ own wishes.” It was the inability of Schiavo’s husband and parents to agree on what her wishes were that ultimately forced the case through the courts.
Quill says, “This sad saga reinforces my personal belief that the courts – though their involvement is sometimes necessary – are the last place one wants to be when working through these complex dilemmas.” But he says that the New Jersey Supreme Court that heard the Quinlan case saw the question of substituted judgment correctly: “If the patient could wake up for 15 minutes and understand his or her condition fully, and then had to return to it, what would he or she tell you to do?”
Quill believes that if a patient’s wishes
are not clear and there is no clear public policy or family consensus, then
treatment should be continued even in persistent vegetative states where no
hope for recovery exists. But he also
writes that the courts found the evidence to be clear in Schiavo’s case and
that, in such cases, “prolonging treatment against what is agreed to be the
patient’s will is both unethical and illegal.”
Quill concludes by saying, “Let us hope
that future courts and legislative bodies put aside all the special interests
and distractions and listen carefully to the patient’s voice as expressed
through family members and close friends.
This voice is what counts the most, and in the Terri Schiavo case, it
has been largely drowned out by a very loud, self-interested public debate.”
The
complete articles are available in pdf form from www.nejm.org. The website also includes an audio interview
with Timothy Quill, conducted by Rachel Gotbaum. (NEJM
Website, 3/22)
SCHIAVO’S
LEGACY IN END-OF-LIFE CARE
From Ohio to Florida, from New York to California and at all points in between, writers, editors and those who work in end-of-life care saw Terri Schiavo’s greatest legacy emerging in the unprecedented interest in end-of-life care planning that the circumstances of her death inspired. Aging With Dignity normally receives 50-100 requests per day for its living will form, Five Wishes. During the last two weeks of Schiavo’s life, more than 20,000 people contacted Aging With Dignity and requested nearly 150,000 copies. The director of one center for end-of-life care said his organization had received more requests for living wills and medical powers of attorney in the past few days than in the past several months combined.
Many writers predict that several state
legislatures will address end-of-life issues, with pressure from an emerging
group of conservatives and liberals siding with disability activists to enact
more stringent laws governing removal of life support. On the day Schiavo died, the West Virginia
House Judiciary Committee voted to kill a bill that would allow physicians to
refuse to provide “medically ineffective” treatment, but reconsidered the next
day, and will debate it this week. A
AP writer Robert Tanner points out that there is “a slew of legislation around living wills and other end-of-life issues that wouldn’t further the aims of this emerging group,” such as a Nevada proposal which would allow a guardian to end life-supporting measures against the patient’s wishes, so long as the patient’s best interests were served. One example of such a case is Barbara Howe, whose daughter and healthcare proxy, Carol Carvitt, has fought to keep her alive even as Massachusetts General sought to discontinue support. A judge found that Carvitt’s wishes concerning her mother had to be honored, but instructed Carvitt to consider her mother’s best interests, not on her stated wishes before her condition became “so desperate.”
Tanner also says that the chances for any laws being enacted at the state level this year are slim, since some legislatures have already adjourned and others are far into their agendas. But, he says, “Both Republicans and Democrats say the arguments aren’t going away.” Additionally, many editors and authors wrote, there will be a concerted effort by the Bush administration and congressional Republicans to place more conservative judges in courts, hoping to create a judiciary more sympathetic to their philosophy. A Time magazine poll, however, found that nearly 70% of Americans opposed the intervention of Congress into the Schiavo case.
The Philadelphia Inquirer says that one outcome of the legal wrangling in the Schiavo case may be additional support for physician-assisted suicide. The author writes, “The theory is that if Americans feel they won’t be able to refuse or remove feeding tubes, they will fight for the one option that gives them certain control of how they die.”
A USA Today editorial opines that one of the most prominent issues sure to be addressed is “whether federal laws should set uniform standards and federal courts should review disputes about the wishes of an incapacitated person.” Such issues are currently the purview of state laws and courts. The same editorial raises the question of “just who pays for expensive efforts to keep incapacitated persons alive?” Medicare doesn’t cover long-term care and both Medicare and Medicaid have severe financial problems.
The Chicago Tribune cites Uwe
Reinhardt, healthcare economist at
Other issues raised by dozens of publications include fears that people who need feeding tubes may refuse them for fear of not being able to remove them, that the public will falsely believe that death after the removal of a feeding tube is painful and fears of hospices that their mission will be misunderstood. To address the latter concern, scores of local hospices and state hospice associations issued statements or invited reporters to write articles about the mission and purpose of hospice. NHPCO, in a press release issued the day of Schiavo’s death, said, “As values-based organizations, honoring individual wishes, faith and cultural traditions and the natural cycle of life, hospices across the country help patients and families grapple with difficult decisions and situations every day. It has been said that hospices provide a caring sanctuary, nurturing the dying, supporting the living and caring for the community. We will continue to offer this special care with respect, dignity and compassion.”
The
PAIN NOTES
* Last week, the Today show, with hosts Katie Couric and Matt Lauer, aired a five-part series on pain. Video clips from the show can be found on the website of the American Pain Foundation, at www.painfoundation.org. (American Pain Foundation Website)
* The
inaugural meeting of the
* Dr. William Hurwitz was recently convicted on 50 counts of illegally distributing narcotics. Though the prosecution never alleged that he made any money from illegal diversion, some of his patients sold their prescriptions and the DEA accused him of drug trafficking. The New York Times said, “His prosecution seems inexplicable except as a signal to other doctors that they can go to prison for life for being duped by their patients. That signal is being heard – the exodus from aggressive treatment of pain is increasing. This might marginally reduce the amount of opioids on the street, but in the process will sentence hundreds of thousands of people to suffer needlessly.” (The New York Times, 3/26)
END-OF-LIFE
& PAS NOTES
* The West Virginia Center for End-of-Life Care, cited by the Huntington Herald Dispatch as being a major reason that West Virginia is “nationally known for having some of the best end-of-life care legislation in the country,” has no funding in the current budget submitted by the administration to the state legislature. Several legislators are “aggressively pursuing” funding for the program. (Herald-Dispatch, 3/27)
* Writing
in The Washington Post, June Lunney
and Joanne Lynn say that people dealing with end-of-life care have been
besieged in recent weeks with calls from reporters asking for statistics on the
lack of living wills, the number of people who die because nutrition and
hydration are withheld and how many families are split by painful end-of-life
decisions. The answer, they say, is “sad
but simple” – no one knows because the research hasn’t been done. Lunney and Lynn say that a very small
percentage of the $27 billion NIH budget would “show quite a return on an
investment” in straightforward surveys, care-delivery demonstrations and
medication trials tailored to end-of-life issues. (The
*
OTHER NOTES
* A Danish study of bereaved parents has found that fathers and mothers who lose a child to death have an increased risk of hospitalization for a psychiatric disorder, with mothers being at higher risk than fathers. The risk is highest during the first year after the child’s death but remains significantly elevated for five years or more after the death. (NEJM, 2005;352:1190-1196)
* The
* A survey conducted by the American Nurses’ Association found that five percent of registered nurses will stop caring for patients within a year, and two percent plan to leave the profession altogether. Just over half were satisfied with their salaries, 59% approved of their chief nursing executive and 63% reported overall job satisfaction. (Modern Physician Daily Stat, 3/30)
* Colorado’s Healing Touch Spiritual Ministries, owned by Linda Smith, offers training to “modern-day healers” in prayer, the laying on of hands and anointment with oil. Smith claims that vibrations emanate from prayer and she says that most clients experience relaxation or a feeling of well-being and that those in pain generally leave with less or no pain. (Science Letter, 3/29)