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Even before Terri Schiavo died in March after a protracted legal battle to remove her feeding tube, several states were pursuing legislation prompted by her case. By mid-April, at least 34 bills related in some way to the Schiavo case had been introduced in two dozen states.

“In fact, there have been many more, but 34 of these bills have had some degree of movement since March 1,” said Eric Hauth, AAN Senior Manager of State Affairs.


The case of Terri Schiavo, pictured here in healthier days, renewed debate and increased awareness about the need for advance directives.

Bills in the hopper range all the way from the Alabama Starvation and Dehydration Prevention Act, which would establish the presumption that artificial nutrition and hydration could not be removed absent specific written instructions from the patient – “I don't want to be kept alive artificially” would not suffice – to California's Compassionate Choice Act, which would make California the second state after Oregon to allow someone to request medication for the purpose of ending life in a humane and dignified manner.

“Some legislation seems to make the process of surrogate decision-making easier, while other bills are going in the opposite direction,” Mr. Hauth said. Which bills get traction and which fade into the background is uncertain. But some neurologists are alarmed at the prospect of legislative efforts to erode what they say is already, despite sensationalist news headlines, a well-developed process for advance directives and surrogate decision-making.


“I am concerned that there will be an effort to erode the principle of informed consent, and to erode the principle of self-determination and autonomy on which informed consent is based,” says James M. Gordon, MD, a neurologist at Seattle's Northwest Hospital and a member of the AAN's Ethics, Humanities, and Law Committee.

“Surrogate decision-making permits people to determine what happens to their own bodies, through appropriate surrogates, in the event they are unable to speak for themselves.”

Such decisions, he says, should be made on a case-by-case basis, with a process for adjudication when there is disagreement – a process Dr. Gordon says works quite well already. “To restrict family members and health care providers acting in good faith would be big mistake, and an attack on the principle of self-determination. I certainly hope that the medical community will not let this rest until they have reaffirmed this crucial fundamental principle,” he says.

“Lots of protections are built into the system already,” agrees Michael A. Williams, MD, Associate Professor of Neurology and Neurosurgery at Johns Hopkins School of Medicine and Chair of the AAN Ethics Committee. In addition to the decision-making standards established by decades of federal court precedent, including the Quinlan and Cruzan cases, there are hospital ethics committees, which provide mediation and input in the far, far greater number of cases in which conflicts over these decisions are resolved before they reach the courts. In fact, says Dr. Williams, “from the time of the Quinlan decision in 1976, the courts have repeatedly stated that these decisions are best resolved at the bedside by physicians, patients and families…and not in the courtroom.”

Ambivalence, he says, will always be a part of decisions about end-of-life care and proxy decision-making. “These are among the most wrenching and intimate decisions that families can make,” he says. “Sometimes even when the patient's wishes are clearly stated in an advance directive, it's an incredibly hard decision, but most families will reach the right decision.”

Whatever legislation is proposed or passed, says James L. Bernat, MD, Professor of Neurology at Dartmouth Medical School, the goal should be to improve end-of-life care, not hamper it. “I am skeptical about plans to change laws in response to this, particularly since they're written in reaction to a most unusual case,” he says. “I fear that any benefits may be outweighed by the burdens of some of these proposed laws, which may cause more trouble for surrogates as they try to perform their difficult task.”


Dr. James L. Bernat said the goal should be to improve end-of-life care, not hamper it.


Cruzan v. Director, Missouri Department of Health, et al, decided by the Supreme Court in 1990, established the constitutional right to refuse life-sustaining treatment. It also affirmed that states can determine the standard of evidence that a surrogate must produce before life-sustaining treatment can be halted. The state of Missouri, in which the Cruzan case took place, requires “clear and convincing” evidence of a person's wishes – a standard somewhere between the near-certainty of “beyond a reasonable doubt” and the fifty-plus-one of “preponderance of the evidence.”

“I don't think there is going to be federal legislation that will counteract the Cruzan ruling,” predicts Dr. Bernat. “On the other hand, what might happen in some states is that they will increase the standard of evidence that surrogates must produce, which states are entitled to do under Cruzan. One hopes that it doesn't “overprotect,” which is always a potential problem.”

This is a particular concern with treatment-specific legislation, such as proposals in Alabama and other states that would require a presumption against removing artificial nutrition and hydration unless the patient had left explicit written instructions that he or she did not want to be kept alive using such means.

“It's extremely difficult for people to anticipate every treatment about which decisions may need to be made in the future, and it's simply unreasonable to expect young adults to create documents, or even to have had an experience on which to base that sort of preference concerning many different kinds of treatment,” says Dr. Williams.


But are not more people filling out advance directives in the aftermath of the Schiavo case? Yes – but that increase may not continue, and it still doesn't account for the majority of people, says Timothy Quill, MD, a spokesperson for Death With Dignity and Professor of Medicine, Psychiatry, and Medical Humanities at the University of Rochester in New York. “All the Web sites that help prepare advance directives have had a huge increase in traffic, and I think many practitioners are noticing more people filling them out, but it's still not in any way the majority of people,” he says. (According to Dr. Williams, studies have found that only about 10- to 15-percent of people admitted to hospitals have advance directives.)

Could legislation trump a health care proxy's decision-making power? Possibly, says Richard Beresford, MD, JD, Professor of Neurology at the University of Rochester and Professor of Law at Cornell University. “Most state laws would allow persons who draft durable powers of appointment to specify what treatments they would or would not want. Mine, for example, specifically empowers my wife to consent to removal of a feeding tube. I don't think any restrictive law could trump that sort of explicit declaration. But a law that creates a presumption that a durable power does not empower the appointee to remove a feeding tube would probably be constitutional so long as the presumption could be rebutted by evidence of intent to allow removal.”


What if a state legislature set the burden of proof for ending withdrawing treatment at “beyond a reasonable doubt?” That would raise an interesting constitutional question, Dr. Beresford says. “It might be upheld, but there is language in the various opinions in the Cruzan case suggesting that a “beyond a reasonable doubt” standard of proof would unduly burden the constitutionally protected right to refuse treatment.”

Under Cruzan, that right is a so-called “liberty interest.” It is not as fundamental as free speech, but the question might be asked: Is the right to refuse treatment so powerful that a law requiring a “beyond a reasonable doubt” standard to allow its expression would be considered too burdensome? “I don't think that question has been resolved yet,” says Dr. Beresford.

Dr. Quill hopes it will not come to that. The Schiavo case aside, he says, there has been relatively little controversy in this area. “We should all take a deep breath and say “The laws we have really work well,” he says. “Legislatures should think carefully before changing them and possibly making it so that families will be overruled about what they think is best.”


Some representatives of the disability community argue that the situation is not nearly so clear. Diane Coleman, president of the advocacy group Not Dead Yet, reports that her organization has participated in preliminary meetings with groups including the Arc, the Spinal Cord Injury Association, and the United Cerebral Palsy Association, to discuss which policies and legislation to back in the wake of the Schiavo case.


Dr. Michael A. Williams: “These are among the most wrenching and intimate decisions that families can make. Sometimes even when the patients wishes are clearly stated in an advance directive, its an incredibly hard decision, but most families will reach the right decision.”

So far, Ms. Coleman said, the organizations have not settled on a particular agenda or model language, but in testimony on April 19 before the House Subcommittee on Criminal Justice, Drug Policy, and Human Resources, she offered several suggestions, including:

  • “Meaningful federal review” of contested third party decisions to withhold treatment in the absence of an advance directive or personally appointed surrogate, including a presumption for food and fluids. This, she said, Congress could do under Medicare and Medicaid law.
  • Congressional study of the impact of existing futility policies. “Since Cruzan, there have been all kinds of studies about end-of-life issues and advance directives, but none of them have examined who is dying by withholding treatment, who made the decisions, what were the factors in the decision, was the person insured – all kinds of things that would be relevant to knowing what's happening following Cruzan,” she says.
  • State-by-state review of guardianship and health care decision laws, focused on disability rights.

Ms. Coleman is particularly concerned that the years of court precedent on advance directives and end-of-life decision-making have evolved, she says, largely without the input of people with disabilities.

“When you look at the issues of people at the end of life, it turns out that the topics are all disability topics: Can you get health care, are you respected, how you relieve the burden on caregivers, how do you manage pain, how do you deal with changing abilities and roles? These are all disability issues; the only difference is knowing that you're going to die soon instead of eventually,” she says. “If it were any other minority group, we'd be the first people consulted, but they don't get it with us. We need to be in the discussion.”


Michael McQuillen, Professor of Neurology and the Medical Humanities at the University of Rochester, shares some of Coleman's concerns. “I think respect for human life is an overarching virtue. If you diminish that respect because someone is ‘a vegetable,’ I think that gives the temptation to diminish it for someone who's not a Nobel Prize laureate,” he says. “I think the slippery slope is real, and since neurology deals with the problems of humanity all the time, I have all the more reason to want to stand fast and protect it.”

He points to studies, such as one performed at New York-Presbyterian Hospital/Weill Cornell Medical Center in New York City using functional MRI, which raise new questions about what goes on in the brains of patients who are in “minimally conscious” states. “There's no question that parts of the brain thought to be totally inactive do light up. Do they light up with enough connection to each other to lead to what we call consciousness? That's still unresolved,” he says.

Dr. McQuillen believes that such developments underscore the need for the neurology community to update the understanding of the vegetative state and its “borderlands,” and how one is separated from another. “Is the permanency of the vegetative state simply a self-fulfilling prophecy, or if you work at it, can you get people to emerge from that state and at what kind of level?” he asks. “This is a conversation that has to be held.”

“Slippery slope” fears aren't unreasonable, acknowledges Dr. Gordon. “There are people who in good faith are afraid that vulnerable people will be treated badly or abused,” he says. “I think that their fear is justified. But the reason abuses occurred in the past was that the principle of informed consent was not adhered to. The important thing is that the vulnerable be represented by appropriate surrogates who can then act in good faith freely.”


What about people who have no one to speak for them – when a surrogate is chosen by default? “Then the standards have to be high,” says Dr. Gordon. “There are people, for example, who have spent their entire lives in institutions and have no one devoted to them in a non-professional way to speak for them. For those people, we have to be extraordinarily careful and standards have to be extremely rigorous under those circumstances. Those are people who were horribly abused in Nazi Germany, and we have to acknowledge that neurologists were complicit in that.”

This concerns Ms. Coleman too. “The kind of guardians governed by these statutes can range from a parent of a person with lifelong intellectual disabilities, who has loved and cared for that person for 30 years and complied with all of their rights, all the way to a public guardian who works for the Medicaid bureau and would really like to have that bed,” she says. “They're all governed by the same laws. We really need to sort out how we can protect patients when guardians may have a conflict of interest, while still respecting good guardians who are really working in the best interests of their ward.”

This suggestion – that families or guardians are withdrawing therapies from the disabled simply because they are disabled – disturbs Dr. Williams. “At least in the hospital setting, were anything like this to occur, it would prompt an ethics consultation,” he says. “She is suggesting that the disabled are not protected by the law, and in my experience, this is simply not true. In Maryland, for example, the law is very explicit: ‘The decision of whether life-sustaining procedures should be provided, withheld, or withdrawn shall not be based, in whole or in part, on either a patient's preexisting, long-term mental or physical disability, or a patient's economic disadvantage.’”


Whatever happens legislatively, the Terri Schiavo case opened the door for an unprecedented national conversation about how we want decisions to be made about our health care when we cannot speak for ourselves. In late March, speaking on palliative care neurology and neurosurgery during grand rounds at the University of Maryland Medical School, Dr. Williams told neurologists, “We have an opportunity now that we haven't seen for a long time, and probably won't see again.” The public is more aware than ever of the issues surrounding advance directives and living wills, offering a unique opportunity for neurologists to talk with their patients about advance care planning.

So how do you have that conversation? First, says Dr. Williams, don't avoid it because you fear frightening patients about their condition. “Many physicians are concerned that if they bring up advance directives, their patients will assume that they have some horrible disease or that their condition is far more severe than they've been told,” he says. “But all you have to say is, “Have you been following the events in the news over the last few months?” Explain to them that you've started to talk through these issues with your patients, to help them think through advance care planning if they want to do that.” When approached that way, surveys have shown that over 95 percent of patients say that they welcomed the discussion and are glad that their doctor brought it up.


Another important principle, says Dr. Williams, is to think of advance directives as not only a means of saying what the patient doesn't want, but what he or she does want. “You don't have to view them in a narrow way,” he says. “Some patients do want every possible measure, and if that's their strong feeling, that's important.”

Since there is no way to anticipate every medical circumstance, it is important to make sure that the patient also designates a health care proxy – be it a spouse, parent, friend, or sibling – to make decisions that are not covered by the living will.

“More than just naming the person, you should then talk to him or her and make sure that they know what you want,” says Dr. Williams. Choose someone you can trust to make the right decision in an unexpected situation. “I've seen more than one living will where it clearly says If my health care agent, in the context of new knowledge about my condition, makes a decision that seems counter to my living will, they are permitted to do that.”

It is important to avoid becoming mired in specifics. “Don't argue about the means before you've understood the ends,” says Dr. Williams. “I talk with patients about what we call “goals of care.” A lot of patients conceptualize what they want as an outcome – like being awake, aware of people, able to interact. Once we understand the outcome they want, we can make that clear in the advance directive, and then if circumstances arise, discuss with the patient or their health care proxy what our chances of achieving those goals are and what treatments we will need to do so.”


  • ✓ Some neurologists are alarmed at the prospect of legislative efforts to erode what they say is already, despite sensationalist news headlines, a well-developed process for advance directives and surrogate decision-making.