FSU seminar explores law, medicine, and ethics

first_imgFSU seminar explores law, medicine, and ethics December 1, 2003 Associate Editor Regular News FSU seminar explores law, medicine, and ethicscenter_img Jan Pudlow Associate Editor While politicians, lawyers, and judges continue to wrangle with the life-or-death controversy of Terri Schiavo’s case, more than a hundred students gathered at Florida State University’s College of Law to hear perspectives from professors of medical ethics, religion, and law.Beginning with an historical framework, Jeffrey Spike, an associate professor at the College of Medicine, reached back to 1975 when the Karen Ann Quinlan case grabbed headlines and the courts wrestled with sticky right-to-die questions.“The judge’s test in the Quinlan case was if Karen could suddenly sit up and see what had happened to her, and she was fully aware and conscious for five minutes, and she was told, ‘In five minutes, you are going to return to that state.’ What would she tell us to do?’“That is one of the best, most concise ways to think about the ethical goal. The proper ethical goal is to try to do what the patient would want,” said Spike, who has a Ph.D. in philosophy and serves on ethics committees at hospitals and nursing homes.“When you have families in distress, it is very easy for them to say, ‘I can’t lose her. You’ve got to keep her alive. Try everything.’ When I am in that situation talking to a family, I often go back to the Quinlan court. I have said, ‘Before we decide, let’s ask ourselves what would she want if she could make the decision right now for herself?’ I’ve had some families stop and think for a second. Sometimes, they start to cry and admit that what they were demanding was all wrong.”The proper medical term for someone who awakens from a coma but never regains consciousness, because of too much damage to the brain’s cortex, is “persistent vegetative state.”Spike estimated there are between 10,000 to 20,000 people in the United States in a persistent vegetative state.“If you are not prepared, you will be surprised when you see them because their eyes are open. They actually have sleep-wake cycles. That is a brain-stem reflex. Their eyes move; they move meaninglessly, darting to the left and to the right. They are not really tracking objects. They move their mouth. If you listen sometimes, they will grunt, moan, or even yell — but never a meaningful word. They can move their limbs a little bit. So you can look at them and think they’ve awakened. And if you are a family member who loves that person, you can easily think that’s the miracle you’ve been waiting for.”People in a persistent vegetative state don’t require any other high-tech medical support than a feeding tube inserted in the stomach, Spike said.“Some would say we have a requirement to keep them alive because it only requires nutrition and hydration. That has been one of the great ethical and legal discussions in the past 20 years. Is nutrition and hydration provided by tube feedings medical treatment or some basic human right or basic human need?” Spike asked.“I think it’s fair to say a consensus has been developed on that topic. I don’t mean by consensus that everybody agrees. But I would say people who are professionals in the field of bioethics, whether they are philosophers or lawyers or doctors, would say that artificial nutrition and hydration is medical treatment. It has gone from over 50 percent 20 years ago to over 90 percent now,” Spike said.For a glimpse into what it must feel like to starve to death, Spike told the students about a study done in Rochester, N.Y., in a hospice unit of a nursing home of terminally ill patients who were alert, able to make their own requests, and report the consequences. They had asked to stop nutrition and hydration and were visited each day by a doctor, a social worker, and a family member who each asked questions about the patients’ comfort levels.“The majority of patients reported every single day until they died that they felt no pain and no discomfort from stopping their nutrition and hydration,” Spike said. “There seemed to be a natural release of endorphins, like a runner’s high. They slowly drifted into a very pleasant state and then slowly lost consciousness and died. It took them about a week or two at most to die, and it was a more pleasant death than anyone would have anticipated.”Doling out practical advice, Spike said it is best to have both a living will and a durable power of attorney for healthcare decision-making.But, he warned, there are few good living wills out there. Too many, he said, contain only general boiler-plate language. The problem, he said, is if the language simply says “if I am terminally ill or permanently unconscious,” the problem may come down to five doctors taking care of you, but “it might not be easy to get them all to agree you are terminally ill.”The better path to take, he said, is crafting your own living will that “gives your general philosophy about terminal illness and life with a significant brain injury, including, but maybe not limited to, persistent vegetative state. Consider it advice to a family member you trust to make this decision.”But, he warned, “Watch out for this easy mistake to make: Do not name someone to be your health-care agent who cannot live without you.” End of Life and the Law The big right-to-die case in Florida was Guardianship of Browning, 568 So. 2d 4 (Fla. 1990). In that case, dealing with a person’s right to refuse life-prolonging medical procedures, Lois Shepherd, associate professor of law, said, “The Florida Supreme Court very clearly said this is a fundamental privacy right under the Florida Constitution, and we have an even stronger Florida constitutional right in this regard than we do under the U.S. Constitution.”She gave an overview of what the statutes require in withholding nutrition and hydration to a loved one in a persistent vegetative state.“You don’t need court approval,” Shepherd said. “But you still have to follow the statutes. The doctors need to look to the right person, and that person needs to have clear and convincing evidence about the patient’s wishes. In the absence of that, it has to be in the patient’s best interest.”There are two ways the issue can come before the court, she explained: If a person who is the proxy seeks court approval, or if an interested party wants to challenge the proxy’s decision.“In this case, Michael Shiavo did seek court approval (in 1998) and at the trial level, the court decided there was clear and convincing evidence that Terri Schiavo would want the feeding tube removed. The court was allowed to rely upon oral testimony, evidence of things she had said, and her values, personality and her decision-making process,” Shepherd said.When it came time for questions from the audience, one student asked about the constitutionality of the “legislature jumping into the courts, since they made Terri’s Law specific to one person.”Shepherd said there is a statute that has standards that are articulated and have procedures. Then the executive branch made a decisions “with no standards, no review, and no procedures,” she saidBesides the argument that the executive branch intruded on Terri Schiavo’s constitutional right to refuse life-sustaining care, Shepherd said the other claim in Michael Schiavo’s brief “is the separation of powers argument, that the legislature stepped in to give authority to the governor to overturn, basically ignore, a final judicial order. And the Florida Constitution and the U.S. Constitution separates those powers.”Another student asked whether any other legislature has enacted a “one-time special law” like Terri’s Law.Shepherd answered she had never heard of it before anywhere in the United States.“This is very unique,” she said. Conflicts Within the Church Aline Kalbian, assistant professor at the Department of Religion, said it was valid to bring religious ethics into the mix because “many of the supporters of the parents of Terri Schiavo are evoking religious sanctity of life, right-to-life type of arguments,” Kalbian said. “The news accounts suggest her parents are Catholics and Terri was raised in that tradition.”She added that “arguments put forth by religious traditions have a lot in common with general moral arguments. Even if you are not particularly religious, there are dimensions, like human dignity, the meaning of suffering, and what death is about. But I’m not going to get that heavy.”As the basis of her discussion, Kalbian quoted a document issued in 1992 by the U.S. Conference of Catholic Bishops, another from the Florida Conference of Catholic Bishops, as well as comments from Bishop Robert Lynch of the Archdiocese of St. Petersburg in 2002.“Bishop Lynch said about the Terri Schiavo case: ‘If Terri’s feeding tube is removed, it will undoubtedly be followed by her death.’ He goes on to say, and this is where it gets interesting: ‘If it were to be removed because of nutrition which she received is of no use to her or because it is unreasonably burdensome to her family or care givers, it could be seen as permissible. But, if it were to be removed simply because she is not dying quickly enough and some believe she would be better off because of her low quality of life, this would be wrong.’“So right there, in that nice quote, Bishop Lynch offers in a nutshell the tensions within the Catholic Church on this issue,” Kalbian said.“What you can conclude is that in some cases it is permissible, and in other cases, it’s not. The issue of whether it is permissible or not is going to revolve around things like potential benefit and potential burden.”Unlike bioethicists, Kalbian said, the Catholic Church has not resolved whether nutrition and hydration is medical treatment or normal care.“What really matters is whether it is ordinary or extraordinary. Is there a reasonable hope of benefit?” she said.“Here’s how they define excessive burden. They have a lengthy description: “too painful, too damaging to the patient, too psychologically repugnant to the patient, too restrictive of the patient’s liberty and preferred activities, too suppressive of the patient’s mental life, or too expensive.’“I’m sure you all are just jumping at ‘too expensive,’ aren’t you! It seems out of place. They make it very clear you should not decide not to treat grandma because you want to go on a trip to Hawaii next month. I’m not quoting them at this point,” she added, sparking laughter at one of the few light moments of the panel discussion.“But they do say there may be cases where taking money away from caring for other family members and using that money to prolong someone’s life unnecessarily, especially when it’s burdensome to them in other ways, might not be necessary. So they are willing to acknowledge that expense could be an issue that needs to be considered.”Decisions about “persistently unconscious” patients [the Catholic Church rejects the term “persistent vegetative state”] is a continuing debate worldwide, Kalbian said. But their writings say decisions about these patients “should be guided by presumption in favor of medically assisted nutrition and hydration.”“So it’s really the closest you come in these documents to a definite statement. They are saying, ‘Let’s take the safer course. We should always err on the side of life. So the presumption is in favor of artificial nutrition and hydration. But it can be withdrawn if it offers ‘no reasonable hope of sustaining life or poses excessive risks or benefits.’“In a way, you are full circle to back where you started,” Kalbian said.Specific to the Schiavo case, Kalbian quoted a 2002 statement from Catholic officials: “Since there is significant disagreement among the family of Terri Schiavo, the Catholic Church would prefer to see all parties take a safer path — namely keep her on artificial nutrition and hydration. The church, however, will refrain from passing judgment on the actions of anyone in this tragic moment.”last_img