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End of Life Care: Adhering to Patient Wishes is Paramount

Defino, Theresa

doi: 10.1097/01.NT.0000288866.56321.1e

The inscription at the bottom of the tombstone of Theresa Marie Schiavo reads, “I kept my promise,” a brief but telling testament to her husband's struggle to lay her to rest following her cardiac arrest and lapse into a persistent vegetative state. Michael Schiavo's desire to honor what he claimed were his wife's wishes pitted him against her family and reached the US Supreme Court and the halls of Congress before his rights as her surrogate decision-maker were upheld and she was allowed to die in a hospice.



This 2005 case did not break new legal ground, say neurologists and attorneys with expertise in similar cases, but reaffirmed the bedrock principle in decisions about end-of-life care — that a physician's legal (and ethical) responsibility is to provide care that reflects what the patient would have wanted.

This is a deceptively simple concept, because sometimes the patient's wishes are not known, and as in the Schiavo case, family members can disagree about the course of treatment. Neurologists may worry about being accused of going against the wishes of the patient or family members and fear the possibility of a malpractice lawsuit.

But experts said that highly charged cases are exceedingly rare and neurologists are not at risk of a wrongful death or other types of suits unless medical negligence is proven. They also recommended ways of approaching such cases to reduce the chances of litigation.

State laws prevail in this arena so it is imperative to know the relevant statues in the areas where you practice, they said. The only applicable federal law is the Patient Self-Determination Act of 1990, which mandates that institutions receiving Medicare or Medicaid funds must advise all patients of their right to execute an advance directive. Of course, an advance directive could not be presented to patients who are already comatose or unresponsive.

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Terri Schiavo did not have an advance directive and had not authorized a do-not-resuscitate order (DNR), a very common situation. It is also common that patients will not have identified anyone who has their power of attorney.

To determine how to proceed in these situations the neurologist should try to find “any evidence whatsoever” to indicate what the patient would have wanted, said Miles J. Zaremski, a Northbrook, Illinois attorney and former chair of the American Bar Association's Standing Committee on Medical Profession Liability. Often this may simply involve asking family members to recite relevant statements the patient had made.

But the first thing you need to do, said Richard Bonnie, professor of law and psychiatry and director of the University of Virginia's Institute of Law, Psychiatry, and Public Policy, is to ascertain who by law is authorized to speak for the patient.

“Under common law, the spouse would be looked to first to express the patient's wishes, then parents or brothers and sisters,” Zaremski said. “A live-in partner who is not married to the patient could also be consulted in the place of a spouse before family members.” Many states now have statutes that designate surrogate decision-makers in a specified order of priority, Bonnie said.

The ideal scenario is when other family members support the decision-maker's position. But if they do not agree, Bonnie recommended taking the case to the hospital's ethics committee to help resolve the conflict.

Sometimes the hospital ethics committee, or hospital legal counsel, cannot resolve conflicts among family members, and one side may bring legal action on behalf of the patient, which takes the neurologist out of the picture to a large degree. “If you have real bickering and it gets very bad, [the family] will go to court, and a guardian will be appointed for the patient,” Zaremski said.

Other conflicts may arise as well. “The hardest situations are when families are pressing for something that the neurologist is reluctant to do, because it tugs against their own clinical and ethical inclinations…in whichever direction. They may be suggesting that care be terminated, or it could happen the other way around,” Bonnie said.

A possible but not often preferred resolution could be to withdraw from a patient's case and transfer him or her to another facility or neurologist. But finding another neurologist willing to take on a patient in these circumstances could prove extremely difficult.

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For some, the Schiavo case highlighted the need for patients to have a living will or a formal advance directive so there is a written record of the patients' thoughts about end-of-life care. But do not be fooled into thinking these documents will establish a clear treatment path, said Dan Larriviere, MD, a neurologist and attorney who teaches a law and ethics class at the University of Virginia with Bonnie.

The neurologist may also face criticism from families for failing to follow an advance directive, or do-not-resuscitate order — or for following the directive too closely, said Dr. Larriviere.

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And advance directives vary based on state laws. In Maryland, for example, individuals can indicate whether the person making decisions for them must follow the directive or can use their own judgment. They can also specify that this person first seek counsel from a spiritual adviser or others.

Some state laws provide different specifications based on the type of patient; for example, addressing demented patients is different from those with brain damage following a traumatic event.

In his practice, Dr. Larriviere said he does not rely solely on the advance directive to guide his care choices. “Even when there is an advance directive you have to ultimately get the family members and the physician on the same page,” he said. “Advance directives cannot anticipate the myriad circumstances that may come up. Even if there is a directive, I am still going to talk to the family about the decisions to be made.”

Dr. Larriviere, Bonnie, and Zaremski agreed that when there is still uncertainty or family conflict over a decision, the safest legal course would be to ensure that the care that is already underway be maintained.

There are also times when a patient is brought in unresponsive without a family member to consult and emergency care must be provided. In this case, the neurologist should still attempt to find out of there is a DNR order or advance directive.

Suits have been filed for failure to follow a DNR. In one case radiologists were accused of malpractice and battery for reviving a patient; they admitted they had not seen the DNR, which was in her chart. The parties settled with a $25,000 payment to the family (AJR 2000;175:1513–1517).

In the absence of an advance directive or DNR, Zaremski said, the patient is “presumed” to have given consent to treatment and the physician is not subject to any unique liability risks as a result of treating the patient.

If a conflict arises with the family later, it can be addressed. “In that [post-emergency] case it is a little easier…you have the advantage of time and perspective” once the patient is stabilized, Dr. Larriviere said. “At that point, you're likely to have more information about the cause of the patient's illness and the likely prognosis — all of which you can review with the family to make an informed decision about what to do next.”

A helpful resource for discussing end-of-life care with your patients and their families is the Consumer's Tool Kit for Health Care Advance Planning from the American Bar Association, which can be downloaded at

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• Berlin L. Malpractice Issues in Radiology: Do Not Resuscitate. AJR 2000;175:1513–1517.
©2007 American Academy of Neurology