Conversations on Ethics & Leadership John Lantos

John Knapp

Welcome to Conversations on Ethics and Leadership. I'm John Knapp, director of the Francis Marlin Mann Center for Ethics and Leadership at Samford University. This week, Samford is hosting the annual Health Ethics and Law Conference. Our theme this year is Moral Distress at the Bedside, with a particular focus on the difficult work of hospital ethics committees. Our guest is Dr. John Lantos, a professor of pediatrics and director of pediatric bioethics at the medical school at the University of Missouri, Kansas City. John, welcome to Samford.

Dr. John Lantos

Good to be here. You're speaking

John Knapp

about medical futility and the relationship of medical futility to our theme of moral distress. I wonder if you might just say a word about how those two concepts relate.

Dr. John Lantos

Sure. Medical futility is sort of a code word in bioethics for a particular kind of debate that occurs in a clinical setting. It's when patients or families request or in some cases demand the treatment that their doctors and nurses think will have no benefit. So the doctors say this treatment is futile, patient and family wants it, and nobody's sure quite what to do. Who gets it? the final say on whether futile treatment should be provided or not.

Dr. John Lantos

The debate gets complicated because in the old days, before patient autonomy and informed consent, it was clear who made the decision. Doctors did. Doctors knew best. They got to decide. And if they said a treatment wasn't going to work, they simply wouldn't provide it and patients had no recourse. Over the last 30, 40 years, though, that balance of power has started to shift through legal cases that created the doctrine of informed consent, through shifts in the way patients and families think about their rights when they are in the hospital, and through the availability of information on the internet. So now people feel like they can make their own decisions, they can tell their doctors what they want or don't want, and the doctor's job is to follow their requests or demands. So doctors in this situation feel powerless and in many cases feel like what they are being asked to do is not just futile, that is not just unlikely to work, but is in fact harmful. So they feel like they are being asked to cause harm to patients and that's where the moral distress arises. As a physician, I feel like I have a conscience-based right to refuse to do something that's harmful to a patient, even if the patient wants it.

John Knapp

Back in 2000, in the New England Journal of Medicine, you and two colleagues wrote an article on this topic where you talked about the failed movement of the 1980s and 90s of the medical community to sort of reclaim the right of doctors to make these decisions. You talked about this in language that said their attempt to convince society that physicians could use their clinical judgment to determine whether a particular treatment would be futile in a particular situation, in essence, failed. They were unable to persuade policymakers that this ought to be national policy. The courts, as I understand it, in cases, many cases, failed to side with physicians in these situations. Where does that debate sit today about the role of the physician versus the role of the family or others in making these decisions for patients?

Dr. John Lantos

Yeah, great question. There have been a couple of phases of this debate. So interestingly, nobody talked about medical futility in this sense before about the mid-1980s. There was one particular article in the New England Journal in 1987 about whether doctors had to provide CPR if they thought it was futile. And that set off an avalanche of scholarly writing about this particular debate. That paper we wrote in 2000, 2001, sort of summarized then the first 15 years. And what we said at that point was whenever doctors went to court or tried to enshrine this in policy, they lost. So courts were much more likely to side with the patients and their right to make decisions about their own health care even if doctors thought it was going to be futile or harmful. Since then there have been some interesting developments though. One of the most interesting and striking has been at the state legislature level. The state of Texas in particular passed a law empowering physicians to go through a long and detailed process It took two weeks and required ethics committee consultation. But at the end of the process, it said if you go through this whole process and everybody thinks it's futile and you can't find any other doctors anywhere else who are willing to take the case, you can unilaterally decide to withdraw life-sustaining treatment with no legal repercussions. That's been done in Texas maybe 20 or 30 times over the last 10 years. It's usually quite controversial. Texas is the only state that's done that. There have been a few case decisions that have gone the doctor's way since then. And many hospitals have developed policies of questionable legality that allow doctors to withdraw life-sustaining treatment. So we don't know for sure as of today how often this really happens and whether sort of when push comes to shove. doctors insist on their right to withdraw treatment that they think is futile or whether in the end they mostly go along with patients and families.

John Knapp

So you think one of the major shifts has been the perception that patients and their families have that they are now empowered to make better decisions by doing their own research, consulting the internet. Is the availability of medical information to families and patients driving more of that insistence on patient autonomy?

Dr. John Lantos

Certainly patients have more information now. Medical knowledge has been democratized to a tremendous degree. Medical journal articles are written up in the newspaper. The latest studies are on the evening news. So people know a lot more than they used to. Medical journals used to be just for doctors to read. One thing you said though may not be true, whether this means patients are making better decisions is not really clear and whether decisions to demand futile therapy are better in some ethical or moral sense or whether they're simply allowed now because of social changes is still an open question.

John Knapp

I took a peek at the presentation that you've brought for the conference. And I was particularly struck by something that you call the futility paradox. I wonder if you could just describe what that paradox is. I found it

Dr. John Lantos

fascinating. So the kinds of cases that are the most troublesome are cases where a patient is in the ICU, seems to be dying, is requiring more and more invasive and often expensive treatment. And the doctors think the outcome isn't going to be very good. But the cases are troubling because the treatments are, in fact, working in the sense that they're keeping the patient alive. The sort of opposite type of situation is futile CPR, where if a patient demands CPR and it's truly futile, it requires five or 10 minutes. It doesn't cost very much. People can be troubled that it's painful. Even that can be dealt with by either doing CPR less vigorously or giving the patient pain medication. Usually the patients are unconscious at that point. Anyway, so when it's truly futile, it's not as troubling as when it works and is keeping people alive. And then, in my opinion, the real problems are not futility. They're either quality of life. That is, doctors don't think quality of life is good enough to justify continued medical treatment.

John Knapp

or

Dr. John Lantos

money. The care is simply too expensive and the low chance of benefit isn't worth the high cost.

John Knapp

We're just scratching the surface of some very important questions and we look forward to hearing what you have to say at the conference tomorrow. It's really our privilege to have you at Samford and to have you participating in the work of the Health Ethics and Law Institute. We've been talking with Dr. John Lantos who is the Director of Pediatric Bioethics at the University of Missouri Medical School at Kansas City.