What will be the fate of Terri’s law’? Playing politics with family conflict

Ethical duty of caregivers to help families come to a resolution, expert says

As legal arguments about the fate of Florida resident Terri Schiavo continue to work their way through the state’s court system, the new law allowing Gov. Jeb Bush to intervene in her case is prompting much debate in bioethics circles.

In October, the Florida state legislature passed a law allowing the governor to intervene and order artificial nutrition and hydration maintained in cases where a patient in a persistent vegetative state does not have a living will. The law was tightly crafted to affect the long-standing legal dispute between Schiavo’s husband, Michael, and her parents, Robert and Mary Schindler.

Terri Schiavo, 39, has been in a persistent vegetative state since 1990 when she suffered brain damage following a heart attack. She did not have a living will, and there are no written indications of her wishes. Since her injury, her husband has claimed his wife would not want to be kept alive and sought, with the support of her physicians, to have her feeding tube removed.

The Schindlers dispute their daughter’s diagnosis — claiming she responds to their voices with facial expressions and could improve with treatment — and have challenged her husband’s right to terminate her life support.

Over the last 13 years, both sides have challenged each other in court, with the original probate court ruling in Michael Schiavo’s favor after an independent, court-appointed physician testified that Mrs. Schiavo was in a persistent vegetative state, incapable of conscious thought, and would never recover. An appeals court supported this decision, and the state Supreme Court and U.S. Supreme Court have refused to hear the case.

On Oct. 15, Ms. Schiavo’s feeding tube was withdrawn in accordance with a court order obtained by her husband following the conclusion of the legal proceedings. But six days later, the state legislature took action, passing the law, and the governor ordered artificial food and hydration be resumed.

Michael Schiavo has challenged the constitutionality of the new law. But even if the law is struck down, much damage has been done, say medical ethicists.

Who should decide?

"The question for me is, is this the way we should make public policy?" asks Robert M. Arnold, MD, director of the Palliative Care Service at the University of Pittsburgh Medical Center and a member of the center’s ethics committee and ethics consultation service. "We as a society have previously said that the courts are the appropriate arena to resolve disputes of this kind. Why was that not honored in this case? Regardless of how you feel about the circumstances, it seems to me that if the legislators believe it is wrong in her case, why is it not wrong for everyone in her situation?"

A landmark Missouri legal case, Cruzan v. Director, Missouri Department of Health, in 1988, established the right of people to choose to have life-sustaining medical procedures stopped or withheld. However, the U.S. Supreme Court, in its ruling, required "clear and convincing" evidence of the person’s wishes, which effectively opened the way for the establishment of living wills and advance directives.

Laws in most states allow spouses to serve as the surrogate medical decision makers when their husband or wife is left unable to communicate or make decisions for themselves and has not signed an advance directive. If a person does not have a spouse recognized by the state law, other close family members are usually authorized to make decisions on that person’s behalf, says Stuart J. Youngner, MD, director of the Center for Biomedical Ethics at Case Western Reserve University in Cleveland.

"I think where this case becomes difficult is you have two people who have high standing as surrogates. The husband probably has higher legal standing — he would in Ohio — but parents are not inconsequential people," he says. "This is a family dispute that has been translated into all of these other things. And that is the big tragedy here."

Since the courts have decided that there is no evidence that Mrs. Schiavo will recover, no evidence that she would have wanted to continue to be kept alive, and no evidence that her husband is not acting in what he believes to be her best interests, Youngner questions how the legislature justified interference in this single case.

"It has been well accepted that if there is no evidence about what she would have wanted, then you go with the person who is at the top of the list [according to state law] of who may serve as a surrogate decision maker," he says. "That is the law. Here are the people who can make that decision, and this is the order.’ If you don’t want to honor the decision, then why have the list?"

The Florida governor and legislature have responded to political pressure by right-to-life advocates who oppose termination of life support measures under any circumstances, Younger notes, and have not made a thoughtful attempt to consider the interests of Schiavo, her family, or other Floridians who might be affected by their actions.

"The legislature did not say, Let’s just take a halt here until we really determine what she wanted, or do a better job of determining what she wanted.’ If this case had been about the husband wanting to keep the feeding tube and her parents said no, do you think Bush would have gotten into it?" he says. "When you watch TV and see the activists talking about this, you hear what the real issue here is. They are calling it a victory for life — not a victory for autonomy and not a victory for family decision making — a victory for life."

Arnold also believes that lawmakers played politics with the family’s conflict.

"From what the legislators have said about the decision, it does not appear that they are very well-educated about what the experience (of being in a persistent vegetative state) might be like or the previous ethical and clinical writings about these situations," he notes. "I just find it very sad and very tragic."

It also is sad, Arnold says, that more could not be done to prevent the family from being torn apart in a dispute over their loved one’s condition, he adds.

Family members often may have disagreements about how to proceed in pursuing care for a critically ill or injured person, and it is part of the ethical duty of the patient’s physician and other caregivers to attempt to help families come to a resolution they can both live with, he says.

"In many cases, you try to look at how you can make sure everyone involved feels heard, and that they feel supported, and try to see if you can find common ground," Arnold says. "Sometimes, in these situations, you can set up some intermediate plans that are not what everyone thought was right, but gives providers options and ways to proceed."

For example, in decisions about terminating life support, perhaps some family members want more time to see if the person’s condition will change, or another opinion, or some other measures taken. Even if such actions aren’t desired by the surrogate decision maker, or recommended by the clinicians, they might allow the ultimate decision to be resolved without causing more pain and injury to the family, he says.

"That might have been pursued in this case, I don’t know," Arnold notes. "But as bioethicists, we sometimes look at these big cases and the disputes they involve, and forget the more common issue of what can be done to keep these family disputes from happening."

Even if the Florida law is found to be unconstitutional, health care providers should let this case remind them of the need to be aware of family needs and conflicts and address them before they are irreparable, he adds.

"I would hope that the result of this would be a perceived need by the Florida legislators to better understand the issues involved, and a perceived need by this woman’s doctors and social workers to see whether there was anything that could have been done to help a family that was literally being torn apart and struggling," he concludes. "Regardless of what your point of view is, everyone in this case is struggling to do the best they can. The question is, what has the health care system done, or ethics mediators done, to see if there could be common ground and to try to keep this from being taken over by forces less concerned with the needs of the family and more concerned with other issues."

Sources

  • Stuart J. Youngner, MD, Director, Center for Biomedical Ethics School of Medicine, Case Western Reserve University, 10900 Euclid Ave., Cleveland, OH 44106-4976.
  • Robert M. Arnold, MD, University of Pittsburgh, 3708 Fifth Ave. Medical Arts Building, Suite 300, Pittsburgh, PA 15213-3405.