Debate over Schiavo and PVS: Will — and should — anything change?
Medicine, ethics, politics, emotion attend death of brain-injured woman
The physician who first described the persistent vegetative state (PVS) watched in deep dismay at the struggle over the fate of perhaps the most famous PVS patient, Terri Schiavo.
"Horrifying. Terrible. I just couldn’t believe it," comments Fred Plum, MD, professor emeritus of neurology at the Weill Cornell University Medical College in New York City. Plum and British physician Bryan Jennett, MD, first described PVS in 1972.
Plum’s dismay with the case centers around two points — the fact that Schiavo’s life was dragged on for years after he says it should have been evident that she would never recover, and the vilification heaped upon Schiavo’s husband, Michael, for insisting that she would not have wanted to live in a persistent vegetative state. Schiavo died on March 31, 13 days after the removal of her feeding tube.
Despite the arguments over Schiavo and whether she could or could not sense her surroundings, pain, or the presence of others, Plum says nothing about the case should change how we view PVS, nor how care is delivered to patients in that state.
And though a consensus seems to be forming that the law that allowed her feeding tube to be withdrawn is solid, the debate continues and questions remain over the judicial and legislative steps that were taken in an attempt to determine what Schiavo would have wanted: Were the steps taken enough? Or were they too much?
Politics and medicine
Among the hottest of the hot button issues that arose during Schiavo’s last few weeks of life was the attempt by Congress to delay or prevent the removal of her feeding tube; Congress subpoenaed Schiavo herself, to delay removal of the tube, and passed legislation giving federal courts jurisdiction for an 11th-hour review of the case. The 11th Circuit federal appeals court subsequently declined to rehear the case.
Many Americans, including conservatives who opposed the manner of her death, have told pollsters that they do not approve of the legislative branch’s incursion upon the judicial branch’s territory, particularly on behalf of only one individual. While fewer in numbers, according to the polls, others have lauded Congress and the Senate for championing the protection of someone unable to speak for herself.
House Majority Leader Tom DeLay (R-TX), following Schiavo’s death, accused the legal system of not protecting a vulnerable segment of the population and says he will ask the House Judiciary Committee to undertake a broad review of the courts’ handing of the Schiavo case. Rep. Barney Frank (D-MA), on the other hand, said Congress "has no business trying to decide on a case-by-case basis" an issue that court after court ruled upon using laws that have been tested extensively over the past 30 years.
"There’s no question that these once-private issues of life and death have been politicized by the right and left, for various purposes," says Larry J. Sabato, PhD, director of the Center for Politics at the University of Virginia in Charlottesville. "But in the American Republic, public opinion really matters, at least when it is definitive.
"Everyone heard the public loud and clear: Government should stay out of these matters, to the extent possible. The president and Congress were rebuked for their intervention in Terri Schiavo’s sad situation, and as a result, all politicians are a bit gun-shy of this issue now."
While it was reported that some conservative Republicans viewed the Schiavo case as a means to rein in "activist judges," Sabato says even those who fervently believe the system failed to protect Schiavo are unlikely to take on similar cases in the immediate future.
No new ground plowed
For more than 200 years, British and American laws have recognized a spouse as having primary standing in making health care decisions for a patient, with parents of adult children having lesser standing. The contentious Schiavo case pitted Terri Schiavo’s husband, who insisted his wife expressed the desire to not be kept alive artificially if there was no hope of recovery, against her parents, who insisted that their daughter would want to live, was responsive and not in a vegetative state, and whose religion valued preservation of life.
"This was not a new conversation," says Jonathan Moreno, PhD, director of the University of Virginia’s Center for Biomedical Ethics in Charlottesville. "For all the discussion about this case and how we respond to it, it hasn’t included any alternative [to current law] that works.
"The framework we have has worked millions of times since Quinlan.’"
"Quinlan" was Karen Ann Quinlan, a young woman who lapsed into a coma after ingesting a mixture of drugs and alcohol in 1975 and never woke up. Her parents fought court battles for years to permit them to disconnect her respirator. They were eventually successful, and Quinlan died in 1985, nine years after the ventilator was removed and she resumed breathing on her own. She never regained consciousness.
The Quinlan case led to laws on advance directives in every state, allowing patients to craft their own end-of-life care, and those laws have been tested strenuously at least eight times, at every level of American courts. In 1990, the parents of Nancy Cruzan went to the Supreme Court in their fight to let their severely brain-damaged daughter die. The Cruzan case entrenched the idea that a person can be permitted to die if there is evidence that death, under certain circumstances, is what he or she would want.
Everyone has right to decline
Under current U.S. law, everyone has the right to decline medical care or nourishment. But in many cases in which patients cannot indicate their wishes and have no written directives, doctors, family members and judges are empowered to speak for them. Some states require "clear and convincing evidence," such as a living will or other advance directive indicating a patient’s choice would be for life-sustaining treatment to end. Other states, including Florida, rely upon the judgment of the patient’s legal guardian — in this case, Schiavo’s husband.
"In the handful of other cases like [Schiavo’s] that have gotten attention, it has been when the system has failed," says Moreno. "Failures are rare, but when they do happen they are incendiary, because they cause us to focus our attention on the most sensitive issue there is, which is how we are going to die."
The failure, Moreno says, is that in the absence of a clear agreement of what Schiavo’s wishes were, her family was unable to reach a consensus.
Food and water — extraordinary measures?
One argument that is not new, but was among the many issues regarding Schiavo’s death, was the withdrawal of artificial nutrition and hydration, which she received through a percutaneous endoscopic gastronomy tube. Many — even those supportive of Michael Schiavo’s standing as his wife’s health care proxy — questioned whether nutrition and water amounted to extraordinary measures or simple humanitarian care.
Some, including the late Pope John Paul II, argue that artificial nutrition and hydration always should be continued, even when other modes of treatment are withdrawn.
Many agreed with the pope’s 2004 statement on care of patients unable to convey their own wishes, in which he said that providing food and water is "a natural means of preservation of life — not a medical treatment," and statements from Catholic leaders commenting on Schiavo were based on the pope’s comments.
Physicians have argued, and courts have repeatedly agreed, that artificial nutrition and hydration are medical procedures that should be treated like any other form of life-sustaining therapy, and therefore should be administered, continued, and withdrawn using the same criteria as other medications or life-sustaining therapies. However, many states have put limitations on the withholding or withdrawal of nutrition and hydration into their states’ living will statutes.
Medical ethicist Alice Herb, JD, a professor of family practice and associate at law for SUNY (State University of New York) Health Science Center at Brooklyn and faculty member in health advocacy at Sarah Lawrence College in Bronxville, NY, says though the limitations generally have not been upheld by the courts, it’s an area that could see renewed legislation due to the Schiavo case and the expressions by some in Congress that the courts failed to protect a person whose wishes were not clearly known.
"Are we going to have a different view of food and water? Maybe," she says. "But what feeling is the public left with? That could make doctors averse to taking risks.
"Legislation could change the rules by which we have been operating. Are our current rules perfect? No. It would be nice to have a real public policy of what to do with our most vulnerable patients when they have no one to speak for themselves, or where there is this mess of controversy," Herb adds.
The role of artificial nutrition and hydration in patients who have lost decision-making capacity and who have made no advance directive is one of the topics to be addressed in a forthcoming report by the Hastings Center, a Garrison, NY-based independent, nonpartisan, nonprofit bioethics research institute. The Center began work last year on the report, which will be published in August.
For many, including some in the medical community, opposition to terminating care for Schiavo was based upon what they considered unconvincing proof that she was in PVS and had no ability to sense her surroundings or pain.
Plum, the pioneer of PVS, has no such reservations.
"No, she could not sense pain," he says. He explains that a patient in PVS can appear to respond to stimulus, but that it is merely an appearance.
"Her cerebral cortex is gone but the thalamus remains," he says. "So when you pinch her, she might push back, but she doesn’t feel that — there’s nothing or no one there to feel it. The thalamus is not self-knowing. It’s an involuntary response to the pain, but she is not receiving that message."
Unlike comatose patients, PVS patients have regular sleep-wake cycles, open their eyes, and make sounds. The appearance of alertness in PVS patients can be wrenching for family members because it gives an impression of cognitive senses remaining. Experts, including court-appointed neurologists who examined Schiavo, say all those activities are involuntary and unfelt by the patient.
Herb says the Schiavo case reached the level of controversy that it did because "the medicine wasn’t presented properly."
Schiavo’s parents released video of an apparently awake Schiavo making noises and, they said, responding to their voices. Herb says those images had to compete in the public forum against medical experts’ explanations of what the persistent vegetative state is.
"She can’t feel pain, speak, or communicate — there’s no brain left to be sentient with," Herb said in an interview with Medical Ethics Advisor shortly before Schiavo’s death. "If you see the CAT scan, the cortex is all jelly. I’m not a radiologist or a neurologist, but compare that to a normal brain — there’s nothing left there."
Plum and Jennett describe PVS as a state of "wakeful unresponsiveness" in which the eyes are open but there is no awareness of self or environment. When a vegetative state continues beyond 30 days, it is described as "persistent." A vegetative state is generally considered permanent three months after anoxic injury, such as Schiavo’s, and 12 months after trauma.
A report published in the journal Neurology in February by Nicholas Schiff, MD, a neurologist and researcher at Weill Cornell Medical College, raised new concerns on behalf of Schiavo and patients like her. Schiff and his colleagues found that some patients who are in a minimally conscious state — patients who are unconscious yet responsive to some extent, unlike PVS patients who are unresponsive — have much more brain activity than previously thought.
Joseph Fins, MD, chief of medical ethics at Weill Cornell, wrote that Schiff’s findings indicate that a small number of patients diagnosed as being in a vegetative state may really be minimally conscious and aware of their surroundings. He points out that these patients are most likely ones who have been relegated to custodial care who may have emerged from their initial vegetative states soon after their injuries, but who received no follow-up tests that would have revealed the change.
Advocates for continuing to give Schiavo nourishment through a feeding tube argued that the Schiff team’s findings should be considered by courts in giving her family more time to prove that treatment could improve her condition; Schiff said in radio and television interviews after Schiavo’s death that he would be "very surprised" if Schiavo had been misdiagnosed.
Good law, IF facts are right
If that’s truly what the facts are, says Robert D. Orr, MD, CM, clinical ethicist for Fletcher Allen Healthcare, the teaching hospital for the University of Vermont, then all the court rulings upholding Michael Schiavo’s right to withdraw feeding from his wife were good rulings.
"In the Schiavo case, some of the disagreements [between her parents and husband] are on the facts," he says.
"The courts made their decisions based on the facts [indicating] that she is in PVS, and if she is, then the decisions were fine," Orr said shortly before Schiavo’s death. "But if they messed up on the facts, then it’s doubly tragic."
But even if mistakes were made in the facts of the Schiavo case, that is not enough to warrant changing the current system and laws pertaining to advance directives and decision making for patients unable to speak for themselves.
"I don’t think this is breaking much new ground, and I don’t think it will change much in patient care or ethics consults," says Orr. "Patients already have the right to reject life-sustaining treatments, and it’s already well established that that can be decided by a surrogate acting on the patient’s behalf."
AMA, ANA comment on Schiavo
The nation’s two largest organizations of physicians and nurses — the American Medical Association (AMA) and the American Nurses Association (ANA) — released no official statements about the Schiavo case until just before her death (ANA) and just after (AMA).
Both organizations offered condolences to Schiavo’s family members, suggested a positive outcome of the painful case is the national debate that has ensued, and urged the importance of making clear advance directives.
But only the ANA voiced an opinion on the decisions made on Schiavo’s behalf.
Barbara A. Blakeney, MS, RN, ANA president, said in a prepared statement that although the organization recognizes the conflict and emotions that wracked Schiavo’s family, "ANA has consistently upheld the right of patients, or if the patient is incapacitated, the right of the designated surrogate, to decide whether to submit to or continue medical treatment."
"In this case, Terri Schiavo’s physicians, over many years, have declared her to be in a persistent vegetative state. Furthermore, there is evidence that Terri Schiavo expressed her wishes not to have her life artificially maintained under such circumstances," said Blakeney. "ANA believes the Congress and the president have acted inappropriately in this case. It is unfortunate that Terri Schiavo has now become the symbol of so many political agendas."
Will the Terri Schiavo case and the battles over her care affect health care in America like the Quinlan and Cruzan cases? Some experts say maybe; some lawmakers say new legislation regarding nourishment’s classification as "treatment" might result. But many say "no."
Herb says the crux of the Schiavo case might be less confidence in medicine and family’s ability to know what an individual would want in a specific scenario. She says, given that few people can know, when they are drafting advance directives, exactly what their circumstances and conditions will be when they are near death, "can we really ever be sure what a patient would want?"
Moreno says advances in end of life care and technology have "dragged us up, rather than down, the slippery slope since the 1960s."
"It makes it more difficult for people to die," he says. "These decisions are made daily and hundreds of times throughout the country. And despite all the political activity around the Schiavo case, no one has proposed a superior framework."
As for whether new laws will be enacted that change how decisions are made in the absence of knowing the patient’s wishes, Herb urges caution.
"This [the Schiavo case] is a bad case, and bad cases make bad law," says Herb. "But the ethics principles behind the decisions in her case have not changed. We try to determine what a patient wants or would have wanted.
"If we can’t decide that, then we try to decide in the patient’s best interests, and then the wishes of everyone else have to fade away."
Resources
- Jennett B, Plum F. Persistent vegetative state after brain damage: A syndrome in search of a name. Lancet 1972; 1:734-737.
- Schiff ND, Rodriguez-Moreno D, Kamal A, et al. MRI reveals large-scale network activation in minimally conscious patients. Neurology 2005; 64:514-523.
- Fins JJ. Rethinking disorders of consciousness: New research and its implications. Hastings Center Report 2005; 35:22-24.
Sources
- Barbara A. Blakeney, MS, RN, President, American Nurses Association, 8515 Georgia Ave., Suite 400, Silver Spring, MD 20910. Phone: (301) 628-5000.
- Alice Herb, JD, Professor of Family Practice, Associate at Law, State University of New York Health Science Center at Brooklyn; Faculty Member, Health Advocacy, Sarah Lawrence College, Bronxville, NY. Phone: (212) 243-6662.
- Jonathan D. Moreno, PhD, Director, University of Virginia Center for Biomedical Ethics, Charlottesville. Phone: (434) 924-8274. E-mail: [email protected].
- Robert D. Orr, MD, CM, Clinical Ethicist, Fletcher Allen Healthcare, University of Vermont, Burlington. Phone: (802) 847-2000. E-mail: [email protected].
- Fred Plum, MD, Professor Emeritus, Weill-Cornell Medical College Department of Neurology and Neuroscience, New York Presbyterian Hospital Cornell Campus. E-mail: [email protected].
- Larry J. Sabato, PhD, Director, Center for Politics, University Professor of Politics, University of Virginia, Charlottesville. Web site: www.centerforpolitics.org. E-mail: [email protected].
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