Ten years have passed since Oregon became the first state in the nation to authorize doctors to assist terminally ill patients in voluntarily ending their lives. Although some predicted the legalization of physician-assisted suicide (also called physician aid in dying) in other states, similar measures have since been defeated in California, Hawaii and Vermont, leaving Oregon’s Death with Dignity Act alone in its field. In 2006, the Supreme Court ruled in Gonzales v. Oregon that federal law does not prohibit Oregon doctors from prescribing lethal doses of drugs, thereby striking down a key challenge to the Death with Dignity Act.
After a decade in action, practical questions about the law remain, even as philosophical and moral questions continue to be debated. Are state-mandated safeguards adequate to prevent euthanasia or other abuses? Should doctors or healing professionals be involved in hastening death? When does autonomy cross the line into suicide?
The Pew Forum on Religion & Public Life invited two distinguished experts to reflect on the successes and failures of Oregon’s law, and where they would like to see the debate go from here.
For further discussion, see these Pew Forum resources: the analysis of the tenth anniversary of Oregon’s Death with Dignity Act, the legal backgrounder on Gonzales v. Oregon and the resource page on end-of-life issues.
David Masci, Senior Research Fellow, Pew Forum on Religion & Public Life
DAVID MASCI: I want to thank you all for coming today. My name is David Masci. On behalf of the Pew Forum on Religion & Public Life, which is hosting this discussion, I’d like to welcome you today to our event marking the tenth anniversary of Oregon’s Death with Dignity Act.
Just by way of explanation, on October 27, 1997, after more than three years of legal and political challenges, the Death with Dignity Act took effect, giving some terminally ill residents in the state of Oregon the option to prematurely end their lives with the assistance of a physician.
We at the Pew Forum thought we would use this anniversary as an opportunity to both assess the law and, more broadly, to discuss some of the questions associated with the debate over physician-assisted suicide or physician aid in dying, as supporters of the practice call it.
To do this, we’ve asked two experts in the field, Leon Kass and Barbara Coombs Lee, to join us today. Both of our guests are the types of people who make the rest of us feel like we haven’t accomplished very much in life.
Leon Kass has spent much of his life exploring the ethical and philosophical implications associated with changes in medicine and biomedical technology, a task for which he is well-suited, having both a medical degree and a Ph.D. in biochemistry. He’s probably best known for his work as chairman of the President’s Council on Bioethics, a post that he held from 2002 until 2005. Dr. Kass is also a prolific author whose books include The Beginning of Wisdom, which is his take on the book of Genesis, as well as Life, Liberty, and the Defense of Dignity. He has taught at the University of Chicago, Georgetown University, St. John’s College in Annapolis, and is currently the Hertog Fellow in Social Thought at the American Enterprise Institute. Welcome, Dr. Kass.
Like Leon, Barbara Coombs Lee is recognized as a leader in her field, in this case, as president of Compassion & Choices, the largest end-of-life advocacy organization in the country. Prior to beginning her career in full-time advocacy, Barbara spent 25 years as a nurse and physician’s assistant before deciding to go back to school, in this case, law school. She has since served as a private attorney, a managed-care executive, counsel to the Oregon State Senate, and she also played a key role in Oregon’s debate on the Death with Dignity Act. So welcome, Barbara.
I think everyone will agree we’re very lucky to have these two people with us today. In a few seconds, I’m going to get the discussion started with a couple of questions for them. After that, I’d like to turn to our journalists and give them a chance to ask some questions. Now, without further ado, let’s get started.
I’d like to begin today’s discussion by referencing the title of Oregon’s law: Death with Dignity. Obviously, the law’s title is intended to send a very clear message. Barbara, let me start with you. When we allow a terminally ill person to prematurely end his or her life, how exactly are we promoting human dignity?
BARBARA COOMBS LEE: I think that dignity means something different to everyone. We all have our own ideas about what it means to die with dignity. In a way, that’s the point: I don’t think there is any one dignified way to die. Do you dress in a tuxedo? And how is that done?
In my experience at the bedside, my impression is that people who decide to use the law are accessing not dignity so much as integrity and authenticity. They might be the first to acknowledge that other people might have very different ideas about what a death with dignity means. For devout Christians, for example, suffering in a way that emulates Christ’s suffering on the cross could be as dignified as accessing aid in dying [could be] for a person whose very idea of personhood and integrity and authenticity and relationship with the divine is tied up with their own moral agency and ability to make the decision, irrespective of what that decision is.
So I would rephrase it a little bit and say not that using the Death with Dignity law is a particular way to serve dignity, but that it assures that moral authority resides with individuals. That is a principle that does bestow dignity on people, absolutely. To assume moral agency for our own important life decisions from the time we achieve decision-making capacity to the time we die, that is what dignifies us as human beings, not the decision that we make.
The whole nation watched as Art Buchwald made a decision to forego kidney dialysis, knowing that that would lead to his death. For some reason, that decision was very important to Buchwald, and it made his life and his death have an integrated meaning for him. That, I think, is the crux of what happens when you pass a law like the Oregon Death with Dignity Act.
MASCI: So in many ways, you tie dignity to autonomy.
LEE: Yes, to autonomy. It’s not what decision is made; it’s who decides. That is the question.
LEON KASS: First of all, I think it’s problematic to tie dignity only to autonomy, though autonomy is part of it. It’s a very strange kind of respect for autonomy when autonomy uses that autonomy to put autonomy out of business. That is, there’s something self-contradictory about saying, “What we respect here is the power of choice,” when the choice is, in fact, to end all choosing. So there’s that kind of difficulty.
Second, in contrast to the Buchwald case, where he chose to forego life-sustaining treatment, therefore making a choice of how to live while dying, the actual enlisting of assistance in administering a lethal agent is a very different matter. While you could say some people might be relieved to know they have that option should they come to an impasse where life becomes intolerable, in fact, the existence of that choice shadows almost every decision that is made by them, for them, and in relation to them, just in the way a do-not-resuscitate order put on a chart in a hospital affects the way every [inaudible] treats the person in that room.
I think a more fundamental point would be to say not only autonomy, but also human connectedness and respect for our interests and needs as persons are part of what we mean by being treated with dignity. The fact that one’s dignity is reduced in part already by the miserable condition in which we find ourselves doesn’t mean we should opt for a technical solution to finish the job. That doesn’t somehow respect the dignity that is there. When patients ask us for assistance in dying, by that very request, they are giving voice to the existence of some residual humanity, which obliges us to respond to it and treat it in the person who is there, in contrast to a dumb animal toward whom we can only act humanely.
What we owe people who are dying is not a technical fix for their miserable condition. We owe them our presence and our company. We owe them non-abandonment. We owe them alleviation and relief of their pain. That is to respect not just some kind of homunculus of choice that lies between the ears, but is to respect the entire life that they’ve lived and the human connections that they have.
I think that dignity is the wrong slogan. If you’re going to push for assisted suicide, this would not be the slogan under which one ought to do it. I think this is a denial, really, of human dignity and a fuller sense –
LEE: I would say, and this will probably become clear throughout the course of this discussion, that Dr. Kass and I come from very different perspectives and very different training. I am not a philosopher; I am not a theologian, and my impressions come entirely from experiences at the bedside of dying people. So it’s short on theory and long on observation.
My observation has been that handing people the moral agency and the ability to make the decision about how much suffering they will endure and whether they will succumb to unconsciousness as the ultimate form of palliation rather than end their lives at the point when they would have to relinquish consciousness, that that is a life-affirming and quality-enhancing action. Quite frankly, I have been startled and surprised to see its impact and its force.
I didn’t anticipate that merely having a conversation with someone about anticipatory suffering and how that might be managed and how that might be escaped could be so transformative in a person’s attitude toward life and the remaining time they have in the material world. But time and time again, we see that spirits are lifted. People reengage with life. The family calls us and says, “You won’t believe the change in Dad. He slept through the night. He ate breakfast. He told a joke. We’ve got him back. For whatever time is left, we have Dad back because Dad feels like a person again. He feels as though he has regained his personhood, he has regained his ability to chart his own course.” That is a benefit that is experienced whether the person ends up taking the medication that he or she has accessed or dying with it under the pillow or in the refrigerator, which is very often the case.
KASS: Just a tiny point. I don’t think my arguments are – they’re certainly not theologically informed. They are informed in part by a sense of the medical vocation and probably much less experience than you have had in patient care. But it seems to be that conversations about suffering and dying and a promise of non-abandonment and care are also ways of giving the dehumanized and isolated and lonely and frightened patient some sense of belonging and hope. We would have to compare notes and talk about a variety of cases to be sure.
The other thing is that a plea for this kind of help in dying is sometimes a manifestation of depression. It is sometimes a fear of abandonment. And I know from very intimate personal experience, when a member of my family asked me daily for poison for seven years, that that request was ambiguous. The request was, “Do you love me so little as to oblige me to linger on? Do you love me so little that you’re willing to be the agent of my death?”
When this particular person got pneumonia – “the old man’s friend” – and the doctor wanted to send the person to the hospital, I said, “You know, you don’t have to go.” And the person said, “Well, if it will make me feel a little bit better, I’ll go.” I got a deep lesson about how hard it is to discern what people’s wishes are in these matters and how we [should] err on the side of not abandoning them and not giving them the sense that we somehow endorse the view that the world would be better off without them.
LEE: I absolutely agree that a request to become eligible to receive the medication is an ambiguous request. It is not a request, necessarily, to be there when I take it; it is, “May I be in the category in which the decision resides with me?” And for many people, that is what they mean by non-abandonment. Abandonment, for them, is the patronizing, “There, there, don’t worry, I won’t let you suffer. Put all of your trust in me. I will take care of your symptoms. I will palliate them.”
For many patients, that feels like abandonment and non-abandonment would be for the physician to say, “I believe that your symptoms can be palliated. I will not abandon you. I will provide for you the very best that my skill and knowledge has. But if you are one of the five to 10 percent of dying people for whom the very best palliative care cannot alleviate your suffering, as you define it, then I will not withhold from you the means to end your life and your suffering.” That, to many patients in Oregon and elsewhere turns out to feel like the best of non-abandonment.
MASCI: What about Leon’s point, though, that in many cases, we may be dealing with people who are very depressed, or some [other] possibilities? For example, someone may have medical expenses that are in danger of bankrupting the family. What sort of protections are in place in Oregon to prevent, say, me from pressuring my aging parent to take advantage of this option simply because we can’t afford to take care of him or her anymore? Or saying, “We’ve been doing this for years and frankly, I’m tired of giving up my whole life for this?” What prevents that scenario from happening?
LEE: I think we all need to be concerned and are concerned that a patient uses aid in dying as the option of last resort and in compelling circumstances. The way to make certain that those are the instances in which it is accessed is to bring it out of the shadows. I believe that Oregon is the one state where aid in dying is safe; it is not the state where the incidence of aid in dying is highest.
As a matter of fact, there is very good data to lead us to believe that legalizing aid in dying, bringing it out of the shadows, exposing it to the kind of close scrutiny and collegial dialogue and second opinions and psychological evaluations we all would support and promote – that that is the only way to make it safe.
Aid in dying, even euthanasia, goes on in every state of the union at a rate four times that of its incidence in Oregon. There’s very good published data to support this. Keeping it in the shadows, keeping it covert and clandestine, is exactly what we would do if we wanted to create the fertile ground for the sorts of abuses, blind acquiescences and premature, impulsive decisions that you and I would be most fearful of. We have no chance of imposing good, professional standards and compassionate processes on a practice that is covert, clandestine, and clearly unsanctioned by the medical establishment.
MASCI: Leon, what about that? What about Barbara’s point that it’s in the shadows in many places; it happens every day; let’s bring it out into the light and that way, we can make sure that it’s done properly.
KASS: I would have some questions about the data. Barbara already, in her comment about Art Buchwald, elided the difference between refusing life-sustaining treatment and taking active steps to cause death. Euthanasia and assistance in dying are large umbrella terms, and you’d have to parse the cases.
But I have some things to say about Oregon. We have a wonderful example of where something is not only out of the shadows, but is legalized and legalized with principles and guidelines that are much more stringent than the Oregon principles, and that’s in Holland, where the practice was tolerated extra-legally and then finally legalized. The guidelines there, by the Dutch government’s own reports, are not being followed. Assistance in dying, voluntary euthanasia, is to be administered only in cases where there is intolerable and unrelievable suffering, only when there is consultation and referral, et cetera, et cetera.
But the Dutch government’s own studies show that some 40 percent of physicians will, under cover of immunity, admit to having euthanized patients without their knowledge and consent, and some 10 percent of them five times or more. There are 1,000 cases of active, non-voluntary euthanasia, including 140 cases in which the patients were mentally competent.
Now, in Oregon, there is no requirement. The only requirement is someone has to have a terminal illness with six months left to live. There is no requirement that there is intolerable and unrelievable suffering. There is no requirement that there be psychiatric consultation to assess whether the autonomy is protected, [and] no requirement that would rule out depression. A very low fraction of the cases, as best we can tell, are referred for palliative consultation.
You have death reports only by the physicians who do this. You have no independent oversight. The Oregon health department issues a report, but based on the self-reporting of the physicians. And partly, HIPAA doesn’t allow – we can’t get the data to find out what really is going on. But there are some anecdotal reports that are not quite as rosy as the picture Barbara presents.
Two more general points. One, the Oregon law – and you see it even much more clearly in Holland – has, whether proponents mean it or not, enshrined in public law the idea that there is such a thing as “better off dead” or a life unworthy to be lived, even if it’s accomplished by choice. And the state has surrendered the monopoly on the use of lethal force to a healing profession to become a death-dealing profession. Those are not innocent little matters.
When the question of whether to suggest assisted suicide or make its means available is present in the doctor-patient relationship, it affects every decision that’s made by patients and their caregivers, never mind the families. We will have changed the world. The Dutch are the canary in the coalmine here. People in Oregon are very nice. But people in Holland are also very nice. And it remains to be seen whether or not we could avoid these abuses. Good intentions in the absence of oversight don’t produce the kind of laboratory research one would want to declare this a success.
MASCI: Barbara, I know you want to respond to this. Let me start by picking one point that Leon made. And that is, we’re already going down the slippery slope, so to speak, in Holland. And if Dr. Kass’s point is correct, also in Oregon. So why don’t you address that first and then I’d like to ask you a follow-up based on something that he also said.
LEE: The Netherlands is a poor model for the United States. We are not the Dutch. The Dutch tolerate behaviors that Americans simply would not. There’s just a very, very different culture. For years, as Dr. Kass said, the Dutch tolerated this practice openly, not only aid in dying, as in Oregon, but outright euthanasia, and tolerated it under the understanding that physicians were required, once the patient had died, to turn themselves in to a prosecutor who would then decide whether these guidelines – not government guidelines; they were actually medical society guidelines – had been followed or not.
Now, if you know anything about medical practice and how likely physicians are to turn themselves in to a prosecutor and ask that person to make a judgment about whether their medical decisions were sound or not, you will understand why, in the early years of the Dutch experience, there was a very low level of reporting. Now, the Dutch looked at it, to their credit, and said, “Something is very wrong here with our system.” They changed it, and they established a council and codified these guidelines, et cetera.
I believe that people who have looked at the Dutch experience – and there was an article that was published very recently in the New England Journal of Medicine – looked at the experience and concluded that, no, there is not a slippery slope, that numbers are consistent, that there is not a violation of the guidelines once they are clearly established and physicians don’t put themselves at risk.
Now, I would also say that, in this way, the Dutch are very different from us. It’s kind of like Buddha’s story about the blind men and the elephant. “Oh, it’s very much like a wall; oh, it’s very much like a snake.” Well, the Dutch look at the way we make medical decisions and the way we orchestrate and manipulate death in this country, and they are appalled. Seventy percent of deaths in this country happen because a decision is made. We need to not be naïve here. Death doesn’t just happen. People aren’t just discovered dead in their beds in university hospitals.
Decisions are made 70 percent of the time. Medications are stopped; patients are sent home; morphine drips are begun often, usually, without the kind of frank acknowledgment of what we are doing and what the situation calls for. The notorious 1,000 cases are cases where, in the United States, physicians would say that these were double-effect deaths or terminal-sedation deaths. The Dutch are frank enough to say, “My intention was to see that the patient died a peaceful death.”
American physicians are not programmed to acknowledge that a consequence can also be an intention. Now, Dr. Kass has talked about the ethical distinction between passive euthanasia and active euthanasia, between withholding and withdrawing, and you could probably also say there is a great distinction between knowledge of a consequence and intention of that consequence.
The Dutch don’t see it that way. The Dutch are much more responsible. I think if someday the medical community is up to accepting the responsibility when they know they are doing something that will cause the patient’s death – withdrawing the ventilator, starting the morphine drip – then they will also be able to acknowledge responsibility for the death that ensues and have a frank conversation with the patient and the family members and the clergy so that everyone knows that the decisions are being made with a frank understanding that death will ensue.
Right now, these conversations are, as I said, covert, clandestine, unacknowledged. Patients feel as though it’s not okay to talk frankly about how their deaths might come. We can make these things a lot safer – and safety is exactly what we’re after if we acknowledge responsibility for the consequences of our actions – by having frank conversations with everyone involved.
MASCI: I see Leon writing so I assume he wants to respond, but before he does, if I could just go to his point about the medical profession. He said, and I’m paraphrasing, that we are taking a healing profession and turning it into a death-dealing profession. I know that organizations like the American Medical Association oppose this. How do you respond to that? Is this concern a legitimate one? Are we asking doctors, even those who volunteer to do this, to do something they shouldn’t be doing?
LEE: If we were talking about euthanasia, I would share those concerns. The difference between aid in dying and euthanasia is profound and must not be minimized. The difference is where the decision resides. In euthanasia, the decision resides in someone else who is making a decision about the level of your suffering, the imminence of your death, and deciding to take an action that will speed things along. With aid in dying, the decision making and the authority to take action never leaves the patient. That is a profound distinction and not one to be trivialized.
Physicians like it best, of course, when they can cure an illness, when they can prolong life, but they must get to the point where they also acknowledge the role that they play in allowing a peaceful death to come. Some do, and yes, the American Medical Association is adamant in its opposition to legalizing aid in dying. The American Medical Women’s Association is not. They just renewed their policy; it’s posted on their website. They are forcefully in favor of allowing physicians to give their patients the means to aid in dying.
So, yes, the AMA is adamant, but others, like the American Medical Women’s Association and the American Public Health Association are not. I think it is changing, and it’s changing for the better because it will improve end-of-life communication; it will make these decisions safer.
KASS: The distinction between giving the patient a lethal injection and providing the pills for the patient to swallow when the doctor’s not in the room is a distinction whose difference is overrated. The physicians become complicit in a death; they use their healing power to be complicit co-partners in patient suicide. And if you go back to the oldest expression of medical ethics, the Hippocratic Oath, [it reads,] “I will give no deadly drug if asked, nor will I make a suggestion to this effect.”
That is, in a way, the first voluntary self-restraint physicians place upon the power that they have, which is a power to kill as well as to heal. That [oath] has been, until the present age, a deep insight into what it means to have that kind of power. So, yes, the patient still has some autonomy here, but it is a transformation of the medical profession for [doctors] to be providing the lethal means. That is my first point.
Second, to go back to the point about the Dutch, I think our circumstances in the United States are much more worrisome than they are in Holland. That has to do with the enormous number of people who don’t have adequate medical care or health insurance. There is one fact that is overlooked in these discussions. Right now, the most common trajectory towards death in the United States is – According to a RAND study of about three years ago, 40 percent of Americans now die following a protracted period, often up to a decade of debility, enfeeblement, and in many cases, dementia.
The good news is we all get an extra decade between 75 and 85 of being healthy; the price we pay for this is 40 percent of us are going to have up to a decade of Alzheimer’s. The last time these debates took place in the States, during the [debate] in Oregon, I was on talk radio. The callers would say, “We’re spending too damn much money on these [cases.]” The argument for allowing assisted suicide was not the autonomy argument that Barbara’s developing here, but the cost-of-payment argument.
If you look at the present situation, and where we’re going, the line between aid in dying, voluntary euthanasia, non-voluntary euthanasia, and, “Let’s put these people out of their misery in order to preserve their dignity,” or the dignity of those of us who are watching [is being blurred.] Many of the advocates of this movement see Oregon as the opening wedge, and the circumstances in this country are much worse than in Holland for the slippery slope.
There’s a paper everybody who’s interested in this subject should read, a pre-Nazi paper by a jurist, Karl Binding, and a physician, Alfred Hoche, [published in] 1920, on “life unworthy of life.” It begins by discussing an argument for the right of people to commit suicide and finishes with a declaration of the stupidity of trying to save or preserve useless lives. If you took the Binding and Hoche paper and put it in one of the bioethics journals today and took away the German names, you wouldn’t recognize it as an old paper.
This is not a critique of Barbara’s intentions or purposes, but one shouldn’t be Pollyannaish about where this country is, and what is likely to follow here, especially if you’ve already blurred the distinctions, saying, “Withholding is really the same thing as actively killing,” and, “The morphine drip is really the same.” If we begin to erode these distinctions, we’re well on the way to eroding the safeguards [against] the notion of better off dead, in a country where there are going to be lots of people for whom the bystanders looking on are going to say, “You’re darn right, better off dead.” I don’t want to live in that world.
MASCI: I do want to open the floor to the journalists, but before we do that, I want to take one piece of Leon’s argument and give Barbara a chance to respond to it, and that it’s this idea of the uninsured, or people without adequate health care; the dangers associated with that. We touched on that a little bit earlier, but do you want to respond to Leon’s point about that, Barbara?
LEE: It is unconscionable, it is deplorable, and it is a scandal that so many people in this country don’t have health insurance. I worry about that; I worry about it not, however, in the situation of people who have exhausted their curative therapies. They are in the most cost-effective, economical, low-cost treatment plan that we have, and that is hospice care, and they have decided that enduring their symptoms is just too much to bear anymore. I don’t worry about them. Hospice care is universally available through a complex matrix of overlapping financial systems.
I worry about it in the months and years before they get to hospice, and before they get to the end of their life, when they might be denied the curative therapies, the life-prolonging therapies, the enormously expensive chemotherapy regimens that actually are the difference between life and death for them.
Aid in dying is not the difference between life and death, and I would interject here that’s why it’s not suicide. That’s why I recoil when I hear people calling people who use aid in dying as suicides. These people do not have the choice to live or die; they are not repudiating life. They are embracing the meaning of their life by ending the suffering and the degradation of that life. If they could live, they would choose to live; they want to live.
There is a woman in California who spoke at one of our press conferences recently, and she said, “I’m dying of colon cancer. I have two young children. No one wants to live like a mother with young children. I’m not suicidal, nor do I want my children to witness an agonized death. I want to die at home, but I don’t want my children to hear me scream. That’s how much I love my family; that’s how much I care about the legacy that I leave. And that’s why I want the power to control the nature and the timing of my end.”
Euthanasia is something so different. Giving a patient an injection puts the timing and the manner in the physician’s hands; and it discounts the decision of all those people who die with the medication under their pillow or in the refrigerator. People are making decisions until the moment they die. It looks as though in Oregon, for the first time, there will be more people who obtain the medication and don’t use it than those who obtain the medication and use it. It’s the empowerment; it’s the authenticity; it’s the integrity the people are after. These people don’t want to die.
Dr. Kass referred an article to you. I would refer another article to you that pretty much puts the end to the financial argument. Some years ago, Peggy Battin at the University of Utah and Ezekiel Emanuel at – where is he, is he in Chicago?
KASS: He is here at NIH.
LEE: – who are on two sides of the argument, one pro-aid in dying, one opposed to aid in dying; they said, “Let’s put our heads together and write an evidence-based article to actually put evidence in the literature about what it would mean if we legalized aid in dying, and if they used it at the level that they do in the Netherlands,” which, I might hasten to say, is about 10 times the number of assisted deaths that there are in Oregon.
Their conclusion was there are simply no financial incentives available to HMO or other managed care plans. The numbers are so infinitesimally small that no rational, sane medical system would ever make decisions on the basis of whether aid in dying is legal or not legal. And it’s because the very expensive treatments are long past for these people. These people are at the end of the road; [they are receiving] very economical palliative care, and there’s really no benefit the insurance plan would gain from these people dying today versus tomorrow or the next day. The times are very, very short.
I would say 10 years down the road – and this is one of the great advantages we have now, that we don’t have to speculate anymore about what might happen, and what abuses might occur; we have evidence, and we can make evidence-based policy judgments now. Aid in dying is more scrutinized by unbiased, scientific minds with scientific methods than any other end-of-life decision. Decisions to start morphine drips; decisions to discontinue ventilators and other life-sustaining therapies are not studied at all. If we were to stack up the studies in peer-reviewed journals that have looked exhaustively on every aspect of aid in dying in Oregon, it would be this high.
KASS: I think we should probably let other people in. But I don’t think we should simply accept this rosy view of the matter having been sufficiently studied. Herbert Hendin made a presentation to the President’s Council on Bioethics on March 3, 2005, reporting on Oregon and the Netherlands, and he’s been working on this subject for years.
It’s very hard to get data, apart from the summary that the state provides of the forms that are submitted by the doctors themselves. We have the self-reporting of the physicians, period. We don’t interview the families, we don’t interview the hospice or the nurses. We don’t have any outside review capable of doing this, and partly for good reasons. These are private matters. But before one says, “Look, we’ve got all of this under control,” let’s open this thing up to real scrutiny. Let’s have some outside group come in there, without a particular bias, and find out, really, what’s happening, if one can.
I don’t know why, for example, the advocates of this, who understand the sad state in which many people are in when they ask for this kind of assistance, don’t in fact make sure there is counsel on palliation, don’t make sure that there isn’t depression. The incidence of depression in people at this particular time of life is extraordinarily high, 60, 70 percent. And that’s not just sadness about the end of life; it’s a matter of clinical depression. And there are cases, including one out of Oregon, published in the American Journal of Psychiatry, about a man who is given these pills, then lives two years longer and eventually dies in the company of family, reconciled with his daughter. He was suicidal [when he requested the life-ending pills.]
But we don’t know how the system deals with all of these cases. For every one of your nice cases that might turn out to be a success, there are lots of others about which we don’t know. And before one multiplies this particular experiment – I mean, you don’t do an experiment without research to find out whether it’s a success. The system is set up in such a way that you can’t find out, except by this very, very superficial way of reporting and analyzing.
MASCI: If I could, Barbara, let me see if I could bring the journalists in, although I know you probably want to respond. Do you want to briefly respond?
KASS: She should be entitled, I think.
LEE: I would just ask you, Dr. Kass, if you feel as though you would like to read some articles by actual scientific teams. The article by Gregory Hamilton and his wife is – there are many, many problems with their method, their ethics, the way they approached that case, the way they reported, and they way they broke confidentiality. There are many teams of legitimate scientists doing legitimate scientific inquiry, exactly the kind you cited: interviewing hospice social workers, interviewing nurses, interviewing family members across the country, doing exhaustive screenings of the population at every level, that have found no abuses and cited many of the advances –
KASS: But the state doesn’t do this. The state department which is supposed to have oversight has no budget for this; they don’t have the authority to do this. You’ve turned over the power of doing this to the medical profession; the state has done so. You’d expect the protectors of the life of the people to be able to supervise this, but they don’t do it.
LEE: The state does a very, very good job. The state follows up on all of these reports of supposed abuse; they are not medical researchers. And I, for one, have more faith in academic researchers and peer-reviewed journals than I would in a state budgetary item that might not have to meet all of the criteria of good scientific inquiry that we know these very reputable, prestigious journals do uphold.
MASCI: Okay. Let me stop here, and open the floor to journalists.
WILL SALETAN, SLATE MAGAZINE: I’m listening to this conversation and trying to boil it down a little bit, and I guess this is a question for Dr. Kass. My impression, listening to all the arguments, is that I agree with the slippery slope concern you’re expressing, Leon. And my problem is, it’s losing out to the phrase “compared to what?”
There’re two senses in which I’m having this problem. I understand the moral argument that your life isn’t yours to take, but once you concede, culturally or morally, the idea of autonomy – and I understand the evidence about depression and dementia, and that there are going to be a lot of people whose ability to represent themselves competently in terms of what they want is not perfect.
But I have a hard time seeing how letting them make the decision, from an autonomy standpoint, can be worse than a categorical prohibition, and name your alternative who’s a prosecutor, some sort of state overseer, who gets to make the decision that, no, we’re better judges than you. To me, it requires a level of abstraction – “You’re asking us for the right to do this, but in so doing we see some humanity in you that says to us, we should respect your abstract humanity.” So I’m having some trouble with that.
And I’m also having trouble on the empirical side. I’m prepared to believe, and the evidence in Holland shows this, that there will be a bad number of people who will be euthanized. The decision should not have been made to help them die; it will happen sometimes. But I have a hard time seeing how that number will be worse than the number of people who either today are, in effect, tortured because they desperately want to be allowed to die, and we don’t let them do that, or people who are doing it crudely, without the benefit of an organized system, as we know is happening today.
KASS: You could present to me any number of really heartbreaking cases in which I would not find fault if someone gave a person a remedy, in the abstract. But those hard cases make bad law and bad social policy. In terms of law and social policy, all of the worries about the abuses, the corruption of the medical profession, a whole series of things – the bad consequences are, for me, decisive.
The other part of this is, as I said at the beginning, I don’t think the dignity argument falls on the side of aid in dying. Some kind of humaneness, or some kind of mercy, might fall on that side. But not an argument from dignity, and I am very worried about the general mentality of a community that comes to say “better off dead,” or, “a life unworthy to be lived amongst us.” Every life that is present to us can somehow be cared for to the very end. And torture, by the way, is a loaded term. Barbara was very careful, and I thought spoke beautifully at the beginning, when she said what some people worry about is falling into the state of unresponsiveness that proper medication for their suffering would produce, and that’s what they reject.
The medical profession has a shameful record in prescribing proper pain medication, but the number of people with truly intractable pain that cannot be properly treated is very, very, very small. And that’s what we’ve learned from the hospice movement; that it’s possible, in fact, to deal with these things. It’s true, people then drift in and out of coma, et cetera, and that might not be a condition people want to be in, and it might bother their loved ones and all. But let’s not say that the alternative is some kind of condition of unrelieved torture.
So, for me, it’s not a religious argument that your life is not yours, and therefore you submit to whatever comes your way, though I suspect if one thought that there might be less mischief done. But that’s not my argument at all. My argument really is a concern about the medical profession, a concern about the state of society, in which we start down this road. We’ve seen it before, and we will see it again if we’re not careful.
I would feel a lot better if the people who were real proponents of this wanted the most stringent guidelines. The Oregon law doesn’t even say you’ve got to relieve horrible suffering; it just says “six months left to live.” Which means the only consideration is, have you met this legal requirement of the law for aid in dying? You don’t have to actually find out if the patient’s got the kind of suffering that you can’t relieve.
SALETAN: If they had the guidelines, would you accept it?
KASS: I’d think a lot better of what’s going on there if there were a real effort to make sure that the thing wasn’t somehow rigged toward taking the easy way out.
LEE: I would respond by saying I think you’ve hit the nail on the head in terms of it being a benefit-burden balancing test. My observations have taught me that the burdens that we bear now, the harm that is imposed on dying patients and their families, the credibility of the law, the status of the medical profession, and a whole host of other factors, is so great that it more than outweighs the minimal, minimal risks of adopting an above-board, sunshine, regulation-based practice of aid in dying.
Dr. Kass would like a suffering component, and I’ll tell you why that is unworkable. I sat in a legislative hearing in California recently where a gentleman, Tom McDonald, talked about why he would want to have a life-ending dose of medication at his bedside. He has a melanoma that is lodged in his chest, somewhere near the pulmonary artery. He was so bold and courageous, as not very many people are, to ask his doctor, “What is going to kill me, Doc, what’ll it look like?” And his doctor was honest enough to tell him that the tumor would erode the pulmonary artery, and he would drown in his own blood.
And he said to the doctor, “Will I have any warning?” The doctor said, “Yes, at first you’ll begin to cough up a bit of blood.” And so McDonald said [at the hearing,] “At that point I decided that I would watch my symptoms; when I first began to cough up blood, I would take my gun and I would shoot myself.” And the legislator actually said, “You know, that’s a good solution.”
Talk about merciless and callous harm inflicted on a compassionate society and the value of life. To me, it doesn’t get any lower than that – to suggest to an intelligent person, looking for a way to be kind to his family and to himself, that he can just go shoot himself. I just don’t think we get any lower than that. I think McDonald deserves a right to determine the memories that his family will be left with when he dies. And he wouldn’t qualify if you had a suffering component, would he? Because he’s not suffering now; he just has a worst nightmare that he wants to escape. And that’s how it is for most people.
PAT ZAPOR, CATHOLIC NEWS SERVICE: Why haven’t more states passed such laws? It’s been 10 years. I think a lot of people assumed there would be a whole flurry of legislation. There have been a lot of attempts, but nothing has [gone] through. I’d just be curious about why each of you thinks nothing has been passed.
LEE: The lobbying forces, the political forces against it, are enormous. Enormous. The proponents are like Dorothy in Oz; we are small and meek. And the forces that prefer the status quo are some of the largest, most powerful social organizations in the world.
KASS: I wouldn’t dispute that. (Laughter.) A form of that is to say that this is pure muscle and pure politics. But one might say that those forces who rally on this subject may understand the problem, and it may be good for the rest of us that they have at least, for the time being, been able to stem the tide.
But, look, we’ll have this back, and not just because it’s the tenth anniversary in Oregon. It was almost in the assembly in California last year, Hawaii came close, and, I think, Vermont. And, by the way, the pressure for this is – the picture I painted about the 40 percent of us in our dotage – the baby boomers haven’t crossed 65 yet. The pressures for changing this are coming soon, and it will come hiding behind this principle of autonomy. You can bet on it. We’re going to find some way to encourage people to have the right to end their life, just so lots of other people can encourage them to exercise their duty to do so. And if they can’t do it for themselves, give them a little push.
So we will see this. And then, if you worry about the things I worry about, let’s hope these political forces don’t lose their muscle.
MATTHEW DALY, THE ASSOCIATED PRESS: I was just reading the story about this whole issue and the study about Oregon and the Netherlands. There was an opponent of the law who says that she’s using the argument that the proponents of the law use and turning it against them. In other words, because the number of people who use it is so small – I think it was 37 in a year – she was saying, “Maybe instead of focusing on this law we should be focusing on end-of-life care.”
LEE: The number is enormously small, and it’s staying small. It’s not growing by leaps and bounds, as one would expect if there were no controls or rampant abuses.
One in six Oregonians, as they are dying, begins to think about the circumstances of their death and have a conversation with their loved ones about whether or not they would be supportive, if it came to it, and they were to take medication to end their lives; one in six. One in 50 go so far as to begin the eligibility process by approaching their physician. That’s the first step; you need to make a request. One in 1,000 takes the medication.
Now, I would submit that the main benefit in our benefit-burden balancing is not to the ones in 1,000s who actually do face circumstances they feel are intolerable and avail themselves of the opportunity to take the medication. But the benefit accrues to the 999 out of 1,000, who know that if they are stuck in whatever their worst nightmare might be – and maybe it’s breathlessness, or maybe it’s nausea and vomiting, or maybe it’s as my friend Penny Schlueter was, never being clean because she had a rectal-vaginal fistula and had constant oozing of fecal matter that could not be controlled. Whatever the worst nightmare is, 999 people in Oregon at least can be reassured that they need not be stuck there. That’s the benefit.
I’m happy with the low numbers. I’m happy because that indicates that it really is an option of last resort. Doctors in Oregon bend over backwards to make sure they haven’t left some palliative care stone unturned, and that they don’t have a patient who is turning to aid in dying prematurely. One of the first impacts of the law was that physicians, all of a sudden, started flocking to palliative-care continuing-education seminars, when in prior years it looked like there was some kind of boycott in place. They would offer these seminars, and no one would come. You pass the law, and all of a sudden it’s standing room only. Those are the benefits.
MASCI: Leon, Barbara’s point about the fact that this law is used by a very small percentage of the people who are eligible to use it, does that at all mitigate the slippery-slope concerns you talked about a little earlier?
KASS: No, not really, and we’re still rather early in this process. I’m tickled by this suggestion that the real benefit of having this law is that we produce conversations and reassurances for lots of other people. I can think of other kinds of laws that would make the same conversation necessary. You [could] make it absolutely obligatory that everybody consider whether or not to have a living will. In other words, it’s terribly important that families start to talk about these things.
By the way, I’m no great fan of living wills. I’m a great fan of durable power of attorney because I don’t think any of us can really foresee, precisely, circumstances in that kind of detail. What you really want is someone who’ll act in your stead and protect your interests, and sad are those people who have no such people, of which there are unfortunately many more of us today than there used to be or should be.
But this is a kind of odd defense of the right to assisted suicide or assistance in dying, to say the real virtue of this is to have the kind of conversations that will make such choices, in most cases, unnecessary. Look, the medical profession has come a long way from the time I was in training, when there was no discussion of death and dying at all. Today hospital ethics committees in every place are discussing these termination-of-treatment decisions. There’s much more discussion now than there ever was; every family in America either has, or has recently had, someone with whom they’ve made a decision about when enough is enough.
It’s not that we’re naïve, or that we’re living in secrecy. I think there are all kinds of ways to promote the kind of conversations we need to have and to help prepare loved ones for the painful but sometimes still very meaningful task of accompanying those we love to the very end, and to do so in a way that is respectful, rather than think there is going to be one more technical solution – when medicine fails to cure you, medicine has a technical solution for what’s left. That’s an American temptation we should resist.
This transcript has been edited for clarity, spelling and grammar by Andrea Useem.