End-of-Life Decision-Making: Medical, Ethical, and Legal Perspectives Compiled and introduced by Kristen Watson   “Death is not the greatest of evils; it is worse to want to die, and not be able to.” — Sophocles End-of-life decisions are not easy ones to make. Life-saving techniques that rescue some patients from premature death can cause suffering, indignity, or financial ruin for others whose deaths are inevitable. Among the many factors that influence end-of-life decision-making are the ethical and religious beliefs of patients and their physicians, patients’ responses to physical and emotional pain, and their attitudes regarding sophisticated technological interventions. Such topics were the core of a panel discussion at P&S Alumni Reunion Weekend last May. The discussion explored the medical, ethical, and legal perspectives of end-of-life decision-making. The panel was moderated by Barron H. Lerner’86, the Angelica Berrie Gold Foundation Assistant Professor of Medicine at P&S. Other alumni participating in the discussion were Joel Zinberg’81, associate clinical professor of surgery at Mount Sinai Medical School and lecturer in law at Columbia Law School; Virginia A. Dulany’58, medical director of Deer’s Head Center in Salisbury, Md.; and Bryan Liang’91, Caruso Research Fellow and assistant professor of law at Pepperdine University. Dr. Lerner opened the discussion by describing the case of a terminally ill 34-year-old man with advanced AIDS who came to the emergency room with a potentially treatable bacterial blood infection. Extremely ill with diarrhea and weight loss for a long time, the patient had tried every conceivable intervention without relief. Given his overall misery and deterioration, he decided he did not want this infection to be treated. Specifically, the patient declined antibiotics, invasive testing, resuscitation, or intubation. He did request aggressive analgesia, understanding that narcotics might suppress his respiratory drive and possibly hasten his death. The patient said, “I’m not the suicidal type, but I don’t want to go on like this.” The hospital staff was uncomfortable with these requests but eventually acceded. After doctors consulted the pain service, the patient was given an intravenous morphine drip. Psychiatry was consulted, noting slightly decreased concentration, but concluded that the patient did “clearly understand the consequences of his treatment refusal and is not making a decision based on impulsive emotionality or depression.” The patient died a few days later. Barron Lerner I think this case is a perfect example of how end-of-life issues are now permeating almost everything we do. This is a particularly provocative case, because the patient was so up front about it, was very intelligent, knew about the existing literature, and had an extremely involved family that was very much in support of what he was doing. Both the house staff and attendings on the case, while very sympathetic to him, were quite uncomfortable with the degree to which he was requesting, and actually almost demanding, aggressive palliative intervention. One of the many subjects we are going to talk about today is terminal sedation. How can we ease the dying process without inappropriately hastening death? Joel Zinberg I think this case is a great illustration of where we’ve been and where we’ve come over the past 30 years in the way we treat terminally ill patients and the way we care for people at the end of life. It illustrates in many ways how developments in law and medicine have changed the way we treat, how medical care itself has changed, and how bioethics has changed the way we approach these sorts of patients. The common law tradition has long insisted that consent is required before you can treat patients. This principle was inscribed into American law in 1914 by Benjamin N. Cardoza, then justice of the New York State Court of Appeals and later a U.S. Supreme Court Justice, in the Schloendorff case. He said every human being of sound mind has the right to determine what shall be done with his or her body, and a physician who operates without consent is guilty of assault. Now the corollary of this is that the patient also has the right to refuse treatment. And that right, to some extent, was honored, but until 25 to 30 years ago the right to refuse treatments necessary to sustain a person’s life was more honored in the breach than in the observance. Since then, there’s been a line of cases starting with Karen Ann Quinlan in New Jersey, the Bartling case in California, many other state court rulings, and finally the 1990 Cruzan decision in the U.S. Supreme Court, saying that you have the right to refuse care, even if that care is necessary to sustain your life, and that can include refusing nutrition and hydration. However, if a physician prescribes a lethal dose of medication, and the patient takes it, that is considered physician-assisted suicide. Over the past 30 years we’ve developed this ability to refuse even life-sustaining care, so if you have the right to refuse treatment, don’t you have the right to end your life? Isn’t it really the same thing when you refuse life-sustaining care as when you say, “Just give me a lethal dose?” Is there any distinction? The Supreme Court recently addressed physician-assisted suicide in two cases, one from Washington state, Washington vs. Glucksberg, and one from New York state, Vacco vs. Quill. The court ruled that individuals have no fundamental constitutional right to kill themselves or to receive physician assistance in doing so. Now there’s no reason a state cannot change its law to allow assisted suicide, but the constitution does not bar a state from prohibiting such acts. Second, they said physician-assisted suicide is easily distinguishable from refusal of life-sustaining care. Third, they said the availability of adequate palliative care, which includes aggressive pain medication and sedation, including the use of terminal sedation (taking into account that administration of pain medication and sedation might end, or at least shorten, the person’s life), is allowed by state statutes and makes the consideration of physician-assisted suicide unnecessary and probably unwise. By and large, I think the court got it right. No matter how well-intentioned or how much the patient wants it, physician-assisted suicide is morally and ethically wrong and probably poor public policy. The guiding principle of medical practice is beneficence, trying to aid patients and keep them from harm. It’s very hard to say that you are following those principles when you get involved with physician-assisted suicide. I think it would insert an element of distrust into the physician-patient relationship. Patients might wonder, “Why do we need all of these bureaucratic oversights?” which is what is always proposed in these physician-assisted suicide proposals. I think it introduces us to a greasy pole, on which one would slide from physician-assisted suicide to involuntary euthanasia to voluntary euthanasia to situations where the weak, the poor, the infirm, and the disabled would be particularly at risk. It might create a situation in which patients thought they had a duty to die, not wanting to be a burden on their families. If the court had ruled a different way and said, this is a constitutional right that one can take one’s own life and receive physician assistance in doing it, there’s really no place where you could stop that. If it’s a constitutional right for people who are terminally ill and in tremendous pain, then it’s a constitutional right for everyone and there may be no need for physician involvement. But once you remove medical oversight you run the risk that treatable depression and pain, the most common sources of suicidal ideation, will go unrecognized and untreated. Finally, I think the court was very prescient in saying, “Look, you have palliative care available.” The biggest problem in this instance is that the profession, for a variety of reasons, one of which is probably ignorance of the law, has been afraid to administer adequate palliative care. You can give high doses of medication to relieve pain and suffering, and, when you do, most of the very limited studies available indicate that the suicidal intent generally disappears. People’s fear of being at the end of the line, being without any sort of control, having intractable symptoms, and having no one there to relieve this makes them wish they could get physician-assisted suicide, have that pill to take. If patients were assured that their physician will be there, and their physician is not afraid to administer medication that is adequate, going to the extreme and risky measure of allowing physician-assisted suicide is not necessary. Virginia Dulany There are certain patient fears that are paramount at the end of life. One is the fear of abandonment, and the other is fear of untreated physical and emotional pain. We need to address these things. What we have now is technologically overtreated and protracted death. We intercede with procedures and treatment. We need to realize when it is time to stop treating, stop prolonging life, and stop prolonging death. Death is part of living; we’re all going to get there. Our education in medicine is to learn to cure, to try to prevent diseases, to try to correct problems, so that we can live a healthier, happier life. We need to educate ourselves and our patients in the best way to humanely care for people at the end of life. The attorney general’s office in Maryland has combined with Johns Hopkins Bioethics Institute under a Robert Wood Johnson Foundation grant to study implications and problems focusing on the end of life and whether any legal changes can be made that would help make dying better for patients and families. Part of this project will be to look at why advance directives are ignored, who’s not paying any attention, how to get physicians to respect people’s wishes, and how to get the public educated to know what their options are. People who drop dead of a heart attack have no problem with their care at the end of life. It’s the people who have multisystem disease who are degenerating, and medical science continues to rescue them from the process of dying, repeatedly, to the detriment of the patient and the family and the bank account. Managed care is now putting some limits on what can be done. I have a patient who just had her second cerebral aneurysm. She is now paralyzed on both sides. Her wish had been for no gastrostomy tubes. After the first aneurysm, she had surgery and clipping and was in coma for about a month. They did place a gastrostomy tube and when she came to us at the rehab center, she became alert. She had gotten back to the point where her tracheostomy was removed. She was beginning to eat pureed food and she could say a few words. Then, suddenly, she had a second aneurysm. At that point the physician and her family honored her request for no artificial feeding. The insurance company didn’t know what to do with her. There was no treatment being given to this woman. After much discussion the company allowed two weeks of hospice care. Earlier this week, the husband was trying to decide whether he could find enough money to continue paying for the hospice or whether he would have to take her home. I do not agree with physician-assisted suicide. I think there are multiple ways to manage pain and we need to educate physicians and families. We need to realize that there are worse things than dying and we need to be supportive in all aspects of care for patients. Hospice programs are being recognized more. Too many people get into hospice within the last two or three weeks of their lives. Right now the regulations are that you must be within six months of expected death. But I’ve never known anybody being kicked out because they forgot to die. It really is important that we concentrate on caring for the individual, both medically and spiritually, and the hospice program can do this with great dignity. Bryan Liang We are living in the age of managed care—190 million of us are in managed care organizations today. Remember, there are only 250 million of us in this country. Everyone loves patients who want to die. Patients who want to die will not spend down so that they get onto Medicaid and basically force us to pay x number of dollars for their long-term treatment, heroic treatment, and so on. So the government loves these patients. The managed care organizations love them because they’re not going to ask for a whole bunch of additional care or experimental treatment. There is no dealing with appeals or dealing with all the additional expenses. The doctor in the modern world also loves these patients because his or her financial profile is going to be within the “acceptable” margins. This doctor, therefore, will not be deselected as a high cost provider. Whatever you feel about physician-assisted suicide, note the incentives. Everyone is rooting for this patient to die. Everyone—regardless of what you might feel about the ethics. The financial incentives in this circumstance make every single party want this guy to take his life or at least have someone help him do it. There have been two legal assisted suicides in Oregon, which has a 41 percent managed care penetration. No place else in the country allows physician-assisted suicide. Basically, the highest penetration managed care markets are going to allow it, whereas other places do not. That’s something we’ve got to face as managed care penetration rises from 40 to 50 percent in Oregon as well as other states. I’ll bet all of you who are in traditional private practice have at least one managed care contract. You are going to have to think about this, not only because you have that patient who is thinking about this, asking you about it, but in addition, you have a family, kids in college, expenses, a mortgage, and all of those things you’ve got to pay for. If you went back to being a high cost provider, you would be deselected. And if you get deselected, you couldn’t pay your bills. It’s not an easy choice. It’s not an easy circumstance to deal with, because you have conflicting incentives. Traditionally, the people who advocate physician-assisted suicide don’t know who the market is. They assume it is going to be these people in intense pain—you have to peel them off the ceiling they are in so much pain—but that’s not the market. There’s a school up north—I think it’s called Harvard—that did a study about who wants physician-assisted suicide, and it was not the people in chronic pain; it was the depressed patient. When you say “go for it” for physician-assisted suicide, are you thinking of those people? It’s probably not the right idea if they are depressed, yet unfortunately when you hear the Hemlock Society talking about this, all they talk about is the intense pain patients, the chronic pain patients. In a hospital situation, even if there is an advance directive signed, sealed, and delivered by the legal authority who approves it, as well as the person’s lawyer, and even if the person is her or himself a lawyer, difficulty can still occur in stopping aggressive care and allowing the patient to die if one family member says, “I don’t want to do it.” Generally, the hospital decides not to do it because they don’t want to be seen as the specter of death and because the threat of a lawsuit is so high. A study published in the Journal of Legal Medicine indicated that when people have family members who say, “We don’t want you to pull the plug,” even if there is a valid advance directive, the hospitals will listen, all the time. It’s very important to always be very up front. In terms of hospice care, a Medicare patient has to be fully aware of the exact diagnosis so that she can sign the forms to get her in. If she’s not aware, federal regulations indicate that she can’t be let in. If you are the family doctor, you are looking at potential legal liability. It’s wrongful death if she dies and she doesn’t know her own diagnosis. She could have gone to somebody else and had this fantastic experimental treatment. Perhaps now instead of having a 4 percent chance of living, she only has a 0.5 percent chance of living. Therefore, you are liable for that particular step you took. And because you are the doctor and you have full knowledge, a good plaintiff’s lawyer could suck some money out of you. Barron Lerner In sum, the debates over physician-assisted suicide have helped to bring the issue of end-of-life care into the spotlight. As the case presented today demonstrates, physicians are still often uncomfortable with aggressive palliative strategies such as terminal sedation. Medical educators must emphasize the teaching of palliative care—to students, residents, and attendings. Editor’s Note: Some of the panelists’ comments were made during the question and answer session at the end of the panel discussion.

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