Meeting Transcript
March 3, 2005

The Sphinx Club
1315 K Street, NW
Washington, DC 20005

COUNCIL MEMBERS PRESENT

Leon R. Kass, M.D., Ph.D., Chairman
American Enterprise Institute

Benjamin S. Carson, Sr., M.D.
Johns Hopkins Medical Institutions

Rebecca S. Dresser, J.D.
Washington University School of Law

Daniel W. Foster, M.D.
University of Texas, Southwestern Medical School

Francis Fukuyama, Ph.D.
Johns Hopkins University

Robert P. George, D.Phil., J.D.
Princeton University

Alfonso Gómez-Lobo, Dr. phil.
Georgetown University

William B. Hurlbut, M.D.
Stanford University

Charles Krauthammer, M.D.
Syndicated Columnist

Peter A. Lawler, Ph.D.
Berry College

Paul McHugh, M.D.
Johns Hopkins University School of Medicine

Gilbert C. Meilaender, Ph.D.
Valparaiso University

Janet D. Rowley, M.D., D.Sc.
The University of Chicago

Michael J. Sandel, D.Phil.
Harvard University

Diana J. Schaub, Ph.D.
Loyola College

James Q. Wilson, Ph.D.
University of California, Los Angeles

INDEX

• Session 1: Aging and Care-Giving: Lessons on Assisted Suicide from the Oregon and The Netherlands' Experiences
  
• Session 2: Aging and Care-Giving: Long-Term Care and New Patterns of Decline
  
• Session 3: Aging and Care-Giving: Assessing Outcomes in Medical Care
  
• Session 4: Aging and Care-Giving: Ends and Priorities in Medical Care
  
  

SESSION 1: AGING AND CARE-GIVING: LESSONS ON ASSISTED SUICIDE FROM THE OREGON AND THE NETHERLANDS' EXPERIENCES

CHAIRMAN KASS:  Good morning.  Welcome to Council members.  Welcome to members of the public to this, the 20th meeting of the President's Council on Bioethics.  We recognize the presence of our Executive Director, Yuval Levin, who is the Designated Federal Officer in whose presence this is a legally constituted meeting.

I am not quite sure what it means that the President's Council is meeting in the Sphinx Club.  If anybody has reflections on that, we can take them later on.

Before we come to the morning's business, we have a few cheerful announcements that I'd like to share with you.  First of all, as you have already heard, our colleague, Robby George, is the winner of this year's Bradley prize.

Second, our law clerk for several years, Michelle Powers, has landed a wonderful job as counsel to the House Government Reform Subcommittee on Criminal Justice, Drug Policy, and Human Resources, where she will be working on the Subcommittee with jurisdictional oversight of the FDA and other drug, science, and bioethical issues.  I want to thank Michelle for, really, her wonderful service to the Council, and wish her all the best in her new job.  Michelle, please.

This morning we continue the Council's work on the subject of aging and caregiving.  All four sessions today in one way or another touch on that subject, and the first session is entitled "Lessons on Assisted Suicide From Oregon and Netherlands Experience."

For the better part of a year, the Council has been considering a wide variety of ethical and social issues connected with the arrival of a mass geriatric society, with some special attention to caring for and caring about people who can no longer care for themselves.  Prime case: persons suffering from Alzheimer's Disease and other dementias.

We have deliberately chosen to take a broad and humanistic view, trying to shift the focus from the more dramatic, explicitly very end-of-life dilemmas that dominate public consciousness and even academic bioethics literature: when to pull the plug or the feeding tube; the ethics of assisted suicide and euthanasia.

With several millions of people now, and soon, to be immersed in a decades long period of debility and dependency, it has seemed to us more responsible and more urgent to focus on how these people should — shall and should live amongst us throughout that period than how to ease them out of life at the very end.

It has not been the Council's intention explicitly to take up the subjects of euthanasia and  assisted suicide in their own right, for reasons just given; and the purpose of this morning's session is not to revisit all of the, I think, adequately articulated moral issues and arguments on this subject.  But I think we would be remiss not at least to pay attention to what has been going on in this area, particularly because, when one talks about care for the elderly and decisions to forgo life-sustaining treatment, this topic invariably comes up, and it has been called to the Council's attention that after a period of quiet, several states will probably soon be considering enacting Oregon-type legislation, partly to provide this option to persons unwilling to continue long-term struggles with their illnesses and disability.

Therefore, it seems fitting for us to inform ourselves on the current state of affairs in those two Western jurisdictions where physician- assisted suicide is legal, the Netherlands and our own state of Oregon.  We would like to know who is choosing it, why, when, how, and especially under what form of monitoring and assessment.

We are very fortunate to have with us this morning to present findings on this subject Dr. Herbert Hendin, who is the Medical Director of the American Foundation for Suicide Prevention and Professor of Psychiatry at New York Medical College.

Dr. Hendin's studies of suicide have won him wide recognition here and abroad, resulted in his receiving the prestigious Louis I. Dublin Award of the American Association of Suicidology.  For the past several decades, he has focused especially on assisted suicide and euthanasia and their impact on end-of-life care.  He has followed closely the developments in the Netherlands and in Oregon, and it is a great pleasure to welcome Dr. Hendin to the Council this morning.

DR. HENDIN:  Thank you, Leon.  I thought — I was speaking to some of the Commissioners before we started today and explaining to them how I became involved in this issue, and I thought it might be helpful for you to know something about that and particularly just what the American Foundation for Suicide Prevention is.  It might give you a better context for the rest of my remarks.

The Foundation was formed, and I was involved in its formation, 17 years ago by scientists and lay people who were concerned with the problem of suicide, and we were modeled after the American Cancer Society or American Heart Association that funded research into suicide.

We do a certain amount of intramural projects; that is, projects done by scientists directly connected with the Foundation, but we were not formed in any way over the issue of assisted suicide and euthanasia.

A few years later they became public issues, due to — actually, then it was Derek Humphrey and Jack Kevorkian who brought it to the public, and we had to — we were asked about it.  In fact, our name in those days was the American Suicide Foundation.  So people would call and say, are you for it or against it?

In any case, we had to look into it, and I was asked with Gerry Klerman, who was then Chair of our Scientific council, was the former head of what used to be called The Drug and Mental Health Administration, to look into it.  Unfortunately, Gerry died before we — about a month before we published our first paper on it. 

It was clear that you weren't going to be able to know too much about it without going to The Netherlands and studying The Netherlands firsthand, because that was the one place where it was in practice, and it was legally sanctioned for about 20 years.  It was sanctioned then only in case law.  Eventually, about six or seven years ago, it was incorporated, or actually less than that, into a statute.  But it was basically permitted by a series of case laws prior to that.

So I ended up going to The Netherlands and actually made four trips there.  The Dutch were interested in having me, partially because of the prestige of our organization — by that time, we had virtually every scientist connected with suicide in this country and a good number of those abroad involved with the Foundation — and partially because they knew that my interest came from the fact that I had studied suicide among people over 60, and the large percentage of them are motivated by depression associated with physical illness, and I and Gerry Klerman had a concern that a lot of people who were physically ill or seriously ill or terminally ill over the age of 60 were going to request assisted suicide and euthanasia and perhaps not be treated for problems, both medical and psychological, that they could be treated for.

I didn't go to The Netherlands thinking that end-of-life care was going to be worse than it is here because I had a very low opinion of end-of-life care in this country at that time, and I think the Dutch, sensing that, thought that the more I saw about what they actually did, the more I would be persuaded of the merits of their system. So they made accessible to me the doctors who were the leading practitioners of assisted suicide and euthanasia, and I got to interview them, hear their cases, and talk to the people who were doing the Dutch government sanctioned studies on the matter.

I think, from the standpoint of the Dutch, I probably was a poor pupil, because I didn't come away with the conclusion they wanted me to come away with.  I was more alarmed, and I felt that end-of-life care was far behind that in this country, and I was persuaded, and I will present you the evidence for that, that a large measure of the difficulties had to do with the fact that there was an easier option available to them.

So with that as a background, let me begin.  I have added the word suicide to the title, because I really don't think that you can fully understand assisted suicide and euthanasia without reference to suicide, particularly because suicide in connection with medical illness is a major problem with an elderly population, and they become intertwined in ways that I will try to indicate.

So I'd like to begin by saying that medical illness plays an important but neglected role in 70 percent of suicides over the age of 60.  We have studies to that effect.

Until relatively recently, the last 10 or 15 years, it didn't seem possible to relieve much of the suffering associated with serious or terminal illness.  Depression associated with physical illness has been assumed to be the natural and inevitable consequence of being terminally ill.  These assumptions provided the impetus for giving legal sanction to assisted suicide and euthanasia.

Study of The Netherlands is helpful in understanding the relation of suicide to assisted suicide and euthanasia and the possibilities of making both seem less of a necessary option for sick older people. 

The Dutch experience also served as a stimulus for the assisted suicide law in Oregon, the one U.S. state, up to now, that has sanctioned it.  I would like to examine with you how assisted suicide and euthanasia operate in practice in The Netherlands, how assisted suicide operates in Oregon, and how both relate to suicide, particularly among the elderly.

Legal sanction for assisted suicide and euthanasia began in The Netherlands in the late 1970s.  The Dutch try to regulate assisted suicide and euthanasia within established guidelines which are:  That the patient must make a well-considered, voluntary request; the patient must be experiencing intolerable suffering that cannot be relieved; there must be consultation with a second physician; and all cases of assisted suicide and euthanasia must be reported.

Charges of abuse led the Dutch government to sanction 1990, 1995, and 2001 studies of assisted suicide and euthanasia, but gave physicians immunity for anything they revealed.  Most violations of the guidelines are evident from these studies. 

Over 50 percent of physicians have suggested, or feel free to suggest, euthanasia to patients, which compromises the voluntariness of the process.  The majority of Dutch cases were not reported, which by itself makes regulation impossible.

Reporting is done after the fact.  Only the doctor can tell us what happened, and several thousand patients who have not given their consent have their lives ended by physicians each year, and all of that is information that is not the result of my studies but is in the Dutch reports.

A quarter of physicians stated they had terminated the lives of patients without an explicit request — that's quoting — from the patient.  A third more of the physicians could conceive of doing so. 

An illustration of a case presented to me as requiring euthanasia without consent involved the Dutch nun who was dying painfully of cancer.  Her physician felt her religion prevented her from agreeing to euthanasia.  So he felt both justified and compassionate in ending her life without telling her he was doing so. 

I was actually — as shocked as I was by the situation, I was surprised that anybody would think that almost anybody from this culture, even if they had been an advocate, would have been impressed by that illustration. 

It was given to me as indicating why physicians sometimes have to end a life without asking the patient, and it seemed to me that almost anybody from another culture would have said why wasn't her right to end her life the way she wanted respected, if you feel that the issue is you should have the right to end your life the way you want to. 

In any case, practicing assisted suicide and euthanasia appears to encourage physicians to think they know best who should live and who should die, an attitude that leads them to make decisions without consulting patients, a practice that has no legal sanction in The Netherlands or anywhere else.

Compassion is not always involved.  In another documented case that is in the Dutch literature, a Dutch patient with disseminated breast cancer who had rejected the possibility of euthanasia had her life ended, because, in the physician's words, it would have taken another week before she died, and "I just needed this bed."

Since the government-sanctioned Dutch studies are primarily numerical and categorical, they do not examine the interaction of physicians, patients, and families that determine the decision for euthanasia.  We need to look elsewhere for a fuller picture.  Actually, I put that on too fast (referring to the slide he was showing).

Other studies conducted in The Netherlands have indicated how voluntariness is compromised, alternatives not presented, and the criterion of unrelievable suffering bypassed.  A few examples from these other studies help to illustrate how this occurs.

A wife who no longer wished to care for her sick elderly husband gave him a choice between euthanasia and admission to a home for the chronically ill.  The man, afraid of being left to the mercy of strangers in an unfamiliar place, chose to have his life ended.  The doctor, although aware of the coercion, ended the man's life.

A healthy 50-year-old woman who lost her son recently to cancer refused treatment for her depression and said she would only accept help in dying.  Her psychiatrist assisted in her suicide within four months after her son's death.  He told me that he had seen her for a number of sessions when she told him that, if he did not help her, she would kill herself without him.  At that point, he did. 

He seemed, on the one hand, to be succumbing to emotional blackmail and, on the other, to be ignoring the fact that even without treatment, experience has shown that time alone was likely to have affected her wish to die.

Another Dutch physician who was filmed ending the life of a patient recently diagnosed with amyotrophic lateral sclerosis says of the patient, "I can give him the finest wheelchair there is, but in the end it's only a stopgap.  He is going to die, and he knows it." 

That death may be years away, but a physician with that attitude is not in a position to present reasonable and acceptable alternatives.

Euthanasia, intended originally for the exceptional case, became an accepted way of dealing with serious or terminal illness in The Netherlands.  Palliative care became one of the casualties.  hospice care lagged behind that of other countries.  Dutch deficiencies in palliative care have been attributed by Dutch palliative care experts to the easier alternative of euthanasia.

Now the Dutch, however, point out that they have reduced the suicide rate in the country by almost a third, from 14.3 in 1980 to 19.7 in 2002.  You can see that reduction, the reduction in the total rate.  But if you take a look, you can also notice that that reduction doesn't really begin until the 50 age group.  Forty to 49 it is insignificantly reduced.  Fifty to 59, it's 22.5 percent.  Sixty to 69, 42 percent.  Seventy and over, it is almost 36 percent.

PROF. SANDEL:  What is the rate?

DR. HENDIN:  You mean the actual rate of suicide for the country? 

PROF. SANDEL:  No.  What do these numbers refer to?

DR. HENDIN:  This rate — This is the rate, 14.7, 14.6 per 100,000. 

PROF. SANDEL:  Per what?

DR. HENDIN:  Per 100,000.  I'm sorry.  That's the way suicide numbers are usually presented, and I guess it really isn't evident to anyone who isn't spending their whole life with those numbers, that that's the way — it is not as clear as it should be, but these are all per 100,000, and the percent reductions are here.  But the most significant part of that reduction is in the population over 50.  You can see that from there.

Here, I am presenting the total deaths by suicide in the three studies that they did, 1990, 1995, and 2001.  But what we are looking at is, if you would add the number of deaths by assisted suicide and euthanasia to the total, then you could see that, actually, rather than having reduced suicide, the increase in suicide is really — it would really be enormous or certainly very significant.

The drop in the older age group appears to be due to the fact that older suicidal patients are now asking to receive assisted suicide or euthanasia.  The likelihood that patients would end their own lives if euthanasia wasn't available to them is one of the justifications given by Dutch doctors for providing  such help.  But as I tried to indicate, among an older population physical illness of all types is common, and many who have trouble coping with physical illness become depressed and suicidal.

Now in 1998 the Dutch government made an effort to stimulate palliative care at six major medical centers.  The Dutch essentially have tried to  address the problem without really formally ever acknowledging that there was a problem.  Nevertheless, those of us who were concerned with what was happening there were pleased that they were, to some degree, addressing it.

So incentives were undertaken to train professionals caring for terminally ill patients.  More than 100 new hospices were established, and there was no increase in assisted suicide and euthanasia cases from 1995 to 2001 compared to a 20 percent increase between 1991 to 1995. 

There were these three studies.  The first study showed that there seemed to be a trend of increasing numbers.  The second showed a leveling off, and it is our hope that, if the educational program is successful, this will be reflected in the decrease in the number of cases of assisted suicide and euthanasia.   However, most physicians have not had training in palliative care or end-of-life care.

Patient autonomy is an illusion when physicians are not trained to treat patients' suffering.  Choice for patients then becomes continued agony or a hastened death.  Studies show that the less physicians know about end-of-life care, the more they favor assisted suicide or euthanasia.  The more they know, the less they favor it.

Oregon is experiencing many of the same problems as The Netherlands but is not doing nearly as much to combat them.  Although legalizing only assisted suicide and not euthanasia, Oregon's law differs from the Dutch in another major respect.

When terminally ill patients request assisted suicide... no, actually, I left out something there.  Yes, the intolerable suffering that cannot be relieved is not a basic requirement for assisted suicide in Oregon.  That's by itself a very significant difference. 

While Oregon is only practicing assisted suicide and not euthanasia, you don't have to be suffering interminably.  All that is required in Oregon — not that that is nothing, but it is an enormous difference psychologically in what happens — is a diagnosis of terminal illness with a prognosis of less than six months to live is considered sufficient. I suspect, if you ask — or I suspect that Joanne Lynn, who will be following me, will address the problems involved in deciding that somebody has six months left to live much better than I could.

It shifts the focus from relieving the suffering of dying patients to meeting statutory requirements for assisted suicide.  It encourages physicians to go through the motions of offering palliative care, providing serious psychiatric consultation, or making an effort to protect those who are vulnerable.  Well, actually, what I wanted to say was vulnerable to coercion.

When terminally ill patients request assisted suicide, the physician must indicate in Oregon that palliative care is an alternative.  They are not required to know how to relieve either physical or emotional suffering.  Without such alternatives, the physician — without such knowledge, rather — without such knowledge, the physician cannot present reasonable alternatives, nor are they required to refer a patient for a consultation with a physician knowledgeable about palliative care.

In only 13 percent of the first 142 requests for assisted suicide in Oregon was a palliative care consultation recommended, and we do not know how many of these recommendations were actually implemented.

Now let me say a word about the fact that a psychiatric evaluation is not required.  Autonomy is further compromised by the failure to mandate psychiatric evaluation in cases of assisted suicide.  Only if the physician believes the patient's judgment is impaired must the physician refer the patient to a licensed psychiatrist or psychologist.  A diagnosis of depression is per se not considered a sufficient reason for such a referral.

Like other suicidal individuals, patients who desire an early death during a serious or terminal illness are usually suffering from a treatable depressive condition.  Studies have shown that non-psychiatric physicians are not reliably able to diagnose depression. 

Patients requesting assisted suicide are usually telling us that they desperately need relief from their suffering, and that without such relief they would rather die.  Treated by a physician who can hear their depression, understands their ambivalence — what I meant was that who can hear their desperation — treat their ambivalence, understand their depression, and relieve their suffering, their wish to die usually disappears.

The psychiatric consultation in Oregon is only concerned with the more limited issue of the patient's capacity to make the decision for assisted suicide.  As I indicated, the physician is usually,  almost invariably, not in a position to decide whether or not that capacity is impaired.  That is usually something that requires a psychiatric evaluation, and usually a psychiatric evaluation is the standard of care for anybody who is suicidal.

The story of Joan Lucas, whose suicide was facilitated and publicized by Compassion in Dying — and that's an advocacy organization that is very active in promoting assisted suicide and euthanasia in Oregon and elsewhere — points out strikingly how such a gatekeeper role encourages seeking psychological or psychiatric consultation as needed to protect doctors rather than patients.

Joan Lucas, an Oregon patient with amyotrophic lateral sclerosis, attempted suicide.  Paramedics were called to Joan's house, but her children sent them away, explaining, "we couldn't let her go to the ambulance.  They would have resuscitated her." 

Joan survived her attempt and was assisted in suicide 18 days later by a physician who gave interviews about the case to an Oregon newspaper on condition of anonymity.  He stated that, after talking with attorneys and agreeing to help aid Joan in death, he asked Joan to undergo a psychological examination.  "It was an option for us to get a psychological or psychiatric evaluation," he said.  "I elected to get a psychological evaluation, because I wished to cover my ass.  I didn't want there to be any problems."

The doctor and the family found a cooperative psychologist who asked Joan to take an MMPI, a standard psychological test.  Because it was difficult for Joan to travel to the psychologist's office, her children read the True/False questions to her at home.

The family found the questions funny, and Joan's daughter described the family as cracking up over them.  Based on these test results, the psychologist concluded that whatever depression Joan had was directly related to her terminal illness and was a completely normal response.

His opinion is suspect, the more so because, while he was willing to give an opinion that would facilitate ending Joan's life, he did not feel it was necessary to see her first. 

Without a proper psychiatric evaluation, it is not possible even to ascertain if a patient has impaired judgment that would make him or her not capable of an informed decision, as required by Oregon law.  Without such a consultation, there is less likely to be an attempt made to understand and relieve the desperation, anxiety and depression that underlie most requests for assisted suicide.   

It was hoped that Oregon would serve as a laboratory for the state, showing us how assisted suicide would work.  This has not occurred, in part because the law was not written with such an aim in mind.  Even more troublesome has been the restrictive "don't ask, don't tell" manner in which the Oregon Health Division, charged with monitoring the law, has interpreted their mandate.

The Oregon Health Division — I abbreviated as OHD — asked physicians participating in assisted suicide to provide only a minimum of medical information about their patients, and patients are not asked to complete or provide any information to the state.

Most of the patients are in hospice care, but OHD does not interview hospice staff, hospice nurses and social workers who may have the most knowledge of the patients.  They are given no voice in the monitoring process, nor are physicians interviewed who, for whatever reason, did not comply with patients' requests for assisted suicide, and a high percentage of the cases are turned down by their own physicians who know them a long time and don't think it is appropriate, and then the patient is referred,  very often by Compassion in Dying, to a physician — group of physicians who don't seem ever to find a case that isn't suitable, although the person's family physician in a very high percentage of cases doesn't seem to think it is appropriate.

To evaluate the end-of-life care provided these patients, the OHD investigators would have needed to interview these physicians, as well as those who participated in the assisted suicide.  The data OHD collects doesn't make it possible to know what transpired in most cases.  In fact, the cases we know are cases that the Compassion in Dying has chosen to publicize, and anybody carefully examining them finds that those cases are similar to the Joan Lucas case, cases that don't persuade you that the case was treated properly.

Now with regard to Oregon's claim that in yearly progress reports the OHD writes, and they usually publish them in the New England Journal of Medicine now, at least in summary report, and they are published, and they are printed on the Internet — They contend that assisted suicide — that patients who received assisted suicide were receiving adequate end-of-life care.  But data from patient interviews, surveys of families of patients receiving end-of-life care in Oregon, surveys of physicians and the data from the cases where information has been made available indicate otherwise.

A recent study at the Oregon Health Sciences University — and that is the university that is composed of people who are basically — that university has been at the forefront of promoting assisted suicide and euthanasia — indicated that there is a greater percentage of cases of inadequately treated pain in terminally ill patients in Oregon since the Oregon law went into effect, and they examined before and after with regard to that.

A report, "Means to a Better End," of the Last Acts Program of the Robert Wood Johnson Foundation, evaluated end-of-life care in all 50 states.  The Foundation and the Last Acts Program have no position on assisted suicide, but have a strong position on providing adequate end-of-life care.

Oregon received good marks for its use of advance directives, for not overusing intensive units, and in training Registered Nurses in palliative care.  Oregon did poorly in nine other measures utilized in the evaluations, including a large number of nursing home residents in persistent pain; a small number of its hospitals providing hospice or palliative care; a small number of its patients able to die at home, which most patients prefer to do; and state policies that don't encourage pain control and palliative care.

Improved psychological and medical care for people with incurable illness is crucial in its own right, but is also probably the best approach we can take to reducing suicide among the elderly.

The World Health Organization has recommended that governments not consider assisted suicide and euthanasia until they have demonstrated the availability and practice of palliative care for their citizens.  All states and all countries have a long way to go to achieve that goal.

People are only beginning to learn that, with well-trained doctors and nurses and good end-of-life care, it is possible to avoid the pain of the past experiences of many of their loved ones and to achieve a good death.

In 1997, in rejecting a constitutional right to assisted suicide, the U.S. Supreme Court, in a sense, challenged the state to provide such care.  The right to such care, embraced by a majority of the Court, is the right that patients should demand, and that every state and every country needs to meet.  Thank you.

CHAIRMAN KASS:  Thank you very much.  Let me ask a couple of things, and then we can go around the room.

First of all, on this question of Oregon being a kind of laboratory for us to learn how this thing operates, you indicate that the requirements of the state are rather minimal to find out what is going on.  To what extent does the existence of the Federal privacy legislation get in the way of anybody, even if they wanted to, getting the kind of accurate data that we want here?

DR. HENDIN:  Well, to my knowledge, it certainly wouldn't affect what the doctors report to the Oregon Health Division.  One could make a case that whether the information should be made public is another matter.

On the other hand, the data could be made available in ways that don't indicate who the patient is or who the doctor is, if one wanted to make that available.  But you would think the Oregon Health Division would collect the information. 

There is one line indicating the evidence that the patient is terminally ill.  There is one line indicating the diagnosis.  There is no evidence presented for any of those opinions, which you would have wanted to know was there.  Were there X-rays?  Were there this?  How did you make the diagnosis?

So you don't have the data, and they specifically don't want any independent researchers to look at that data. 

Now the fact is that the doctors are proceeding, who practice it, to publish the data on their cases.  I mean, so they are doing it in journals, but not in a way where they are subject to a group like this or a medical group that would then question them about it. 

So that it is sort of being done in a way that is not done in medicine.  Normally, you would want feedback from people. 

Now we have communicated — the study in Oregon — something I have been doing with Kathy Foley.  We have been in touch with some of the doctors and asked them if they ever talked to the original doctor, which you assume you would do, if a doctor turned down your patient and is referred to you.

One of the doctors who published his case said, no, he didn't.  Then he said he admitted that probably he should.  But that's not the way in which they are going.  They are going the way of the Dutch in the sense that they are not — the Dutch are now — three percent of the cases are referred for psychiatric consultation. 

I mentioned a case where the doctor wanted a consultation of the psychologist to protect himself, but — and initially Oregon doctors were doing those consultations, but they were very often pro forma, like this one: finding people who are on a list of people who believed strongly in it and weren't looking too carefully at the case.

I think the Oregon figure, which initially there were 40 or 50 percent, has dropped to 13 percent who are referred for psychiatric consultation, and this is the kind of consultation they are getting.  So they are moving in the same direction as the Dutch with regard to it.  But it would be possible to make the data available while still protecting the confidentiality far more than they want.

CHAIRMAN KASS:  And the second short question:  What about the medical reimbursement for assistance in suicide?  Are there financial incentives?  How does that — does the state reimburse?

DR. HENDIN:  Oregon is in a unique position that ways, because they have, almost unlike — not almost — any other state, they have stipulations about what you can be reimbursed for every condition.  So they take very much priorities with regard to it.

The doctors in Oregon who work with this problem have the actual data.  I remember their conclusions about it, though, which was that the amount that they are giving for palliative care at the end of life has been reduced dramatically.  So that it is much easier to simply get your coverage for assisted suicide, and they think that that is a factor that plays into it, that Oregon has so severely curtailed the reimbursement for end-of-life care.

Of course, that is a factor that is going to be an issue all over.  I interviewed the doctor who was probably the pioneer of assisted suicide and euthanasia in The Netherlands.  So I am not quoting something he told me in private.  He said that publicly, Pieter Admiraal.

He felt that by 2020 that the Dutch were going to have to be doing more cases of assisted suicide and euthanasia to cope with the problem of an increasingly elderly population.  And he said to me, he was glad he wasn't going to be around.  He is a man my age.  He was glad he wasn't going to be around to see that happen.  Nevertheless, he still favors assisted suicide and euthanasia in The Netherlands.

CHAIRMAN KASS:  Thank you.  Jim Wilson?

PROF. WILSON:  Thank you very much, Dr. Hendin.  It was a very revealing report.

I am reminded of the phrase of the famous English writer who objected to bear baiting, less for concern for the care of the bear than for concern for the human participants.  I have the same feeling here.

Troubling as suicide and assisted suicide is for the patients, I am more troubled by what it does to the doctors who participate in it.  And to state the matter very strongly, perhaps to overstate it, I worry that such laws will result in the corruption of the medical profession.

You have spoken to people in The Netherlands and in Oregon who have participated or who have not participated in assisted suicide.  Is there anything, without quantitative data, drawing only on your own judgment, you can tell us about the characteristics of the physicians, their specialty, their consultation skills, their age, their personality, of those who participate frequently and those who are reluctant to participate?

DR. HENDIN:  I can tell you a little, but it is not — You know, it is based upon interviews of maybe 25 or 30 physicians.  I would caution you that this is not a scientific factual study like the material I tried to present.

I did get to interview, oh, six or seven of the leading practitioners of the practice, and they were the ones referred to me by the organization that was for it.  What you tend to see is that those who are doing a number of the cases become somewhat  hardened to it and are not terribly troubled by it.

I was struck by this, because when at one point when Leon and I were testifying before Congress on it, one of the doctors there claimed that the criteria for doing it — this was an advocate — was that you had to be deeply troubled by it, as though if you were deeply troubled by it, it was all right and, if you weren't, it suggested something wrong.

I have pointed out to him in private discussions — I don't know if I said it at that meeting — that my experience has been that, if you do five or six or seven or 10, somehow those physicians don't seem so troubled.

The thing I did notice was that a number of family physicians who did one or two cases are sufficiently repelled by it that they tell you they will never do it again, because they were troubled by it.

One thing that I should have mentioned — I don't know how I omitted it.  When I was indicating that the Dutch have made some progress, it's too early to say whether it will be sustained — was that for the first time since they've had this training, a number of the doctors who had the training have written publicly that they regret cases that they put to death by euthanasia, and they wouldn't have done them, had they had the cases now, had they known then what they now know about how to treat such cases.

Now you couldn't have even seen a doctor publish that when I was doing my work five years earlier.  So there's been some change.

Now, actually, the person who has written most eloquently about what happens to physicians is the gentleman at your right.  However, I think what I saw in The Netherlands supports what Leon was hypothesizing would happen, and that is just that. 

So now I can say the medical profession supported this or it never would have happened, and part of the reason it isn't happening here is that, so far, the  American Medical Association has strongly opposed it, but, more importantly, about six or seven years ago they introduced a program of training doctors in end-of-life care.

I was telling a few people before we started, it has been dramatic the difference that has had upon doctors.  So that 45 percent in their polls — I get confused on which Emanuel it is, but it's one Emanuel — Rahm Emanuel is in the government.  So it's Ezekiel Emanuel who is the physician who studies oncology. 

In his studies, 45 percent of doctors before the AMA had this program, were in favor of assisted suicide.  It is now down to 18 percent, and euthanasia, which was up in the thirties, is now down to eight or nine.

Now the doctors are ahead of the public with regard to this, and the doctors who have been educated — and they are training them as they go forward — are in the vanguard of this.  But there's still a big disconnect between where the doctors are.            The doctors are — It's almost like smoking, where the doctors were the group that stopped smoking totally, and it's taken longer for the public to recognize the effect.

So I think that's so.  I did not deal with that in this work, and I don't feel that I have the kind of data to present.  I was trying to present to you initially what we had data, but if you are asking for my impression of it, that's my impression of it.

CHAIRMAN KASS:  Rebecca Dresser, and then Gil.

PROF. DRESSER:  Thanks, Dr. Hendin.  I ask this question not as somebody who is pro-legalization.  I have many reservations, but for the reasons you discussed, the quality of the decision making, the quality of the care, the messages sent.  But I do think we have to think about this in a broader context.

We have a lot of different end-of-life conduct.  We have the active measures you have discussed that are openly recognized and legal.  Then we have, you know, certainly in our country, the under the table active measures and assisted suicide.  Then we have so- called passive euthanasia, forgoing life-sustaining treatment, terminal sedation, stopping nutrition and hydration, risky palliative care, and all those things can contribute to a hastened death.

So it seems to me it has been very good to shine a really bright spotlight on the areas where physician assisted suicide and euthanasia have been legally permitted, but I think, to be fair or to really have the baseline, we would want to look at the quality of the decisions people are making about these other practices that are permitted or aren't legally permitted but are going on under the table.

So I wonder if you think somehow there is a greater danger of misapplication in the Oregon and Netherlands situations you have described in terms of end-of-life practice versus the other practices we allow.

Then, secondly, I guess just having read and studied about this for a while, my impression is that the training part that you mentioned that has made a difference in The Netherlands is really crucial, because inevitably all of these decisions will be somewhat private and under the control of physicians. 

So certainly, whether something is legal or not will make a difference for some physicians, but in many, many cases the quality of the death decision will depend on how careful the doctor is, how informed the doctor is, and so forth.

DR. HENDIN:  Well, I think the tendency to put all of those in one bag is a little bit part of the problem, because I think there is an enormous difference between these other measures.

So that the advocates of assisted suicide and euthanasia like to refer to it as assistance in dying, but everything is assistance in dying.  Sitting at somebody's beside is assistance in dying, and that is because there is something that people sense is different about the doctor actively intervening.

So I am not strongly in favor of — in fact, I am bothered by the notion of people calling this assistance in dying laws or something like that.

Now with regard to the under the table, it is kind of interesting.  The big survey that was done of that was done by Timothy Quill, who was an advocate of it, and Dianne Meyer at Mount Sinai, who was also then an advocate. 

Dianne Meyer concluded from the surveys that they did that it was two or three percent of physicians that were practicing it, who had at least at times assisted in suicide or practiced euthanasia, with or without consent, and actually the highest number of those were doctors who had done it without the consent of the patients.  Eighty percent of them had done it without consulting patients.

She changed her mind about legalization, feeling that if that percentage of doctors would do it while it was still something illegal, given that kind of sanction, the tendency for the practice to become — for people to do things that would violate even the stipulations of the law, which is what we have seen in The Netherlands, that most of the cases that are not reported are cases that don't meet even the Dutch requirements, which are fairly liberal, which basically say, if you meet those requirements and report it, that's it.  They don't report it. 

So that I think that legalization, contrary to what is often said, that somehow you are going to regulate it, is going to give sanctions to things that are worse.  That's what I think happened in The Netherlands.

There may have been a second part to your question that I've forgotten.

PROF. DRESSER:  Well, I guess one thing I want to point to, though, is:  When patients make decisions to forgo care even, the sort of most acceptable end-of-life decision, we want to be sure they are competent.  We want to be sure they are taking advantage of treatment for depression, if that is something that could help.

DR. HENDIN:  Now I remember.

PROF. DRESSER:  And so forth.  But we don't really make sure that all those things happen.

DR. HENDIN:  Let me address that, because I think there is no question that that is something we would want to make sure of.

On the other hand, in actual practice the decisions that are being made to withdraw life support, let's say, or to forgo care are usually being made in hospitals, and this is something that Joanne Lynn can address better than I can, but I have been involved in this enough to know that in hospitals it goes through an enormous amount of review before that is done.  There are ethics committees.  There's consultation.  There's a great deal of things that happen.

Most of the assisted suicide cases die at home.  So there isn't — or euthanasia cases.  There isn't that kind of regulation.  Now is that regulation perfect in every hospital in every case?  I don't know, but I'm sure it isn't.  But I think there is still a difference.

CHAIRMAN KASS:  Gil Meilander, then Peter.

PROF. MEILAENDER:  Dr. Hendin, there is an aspect of this issue that puzzles me, not because I am in favor of assisted suicide or euthanasia — I'm not — but just because it puzzles me.

I can think of a few ways of responding, but I'd be interested to hear how you would respond.  This is the issue.  There's a sort of a Catch 22 for me here.  On the one hand, many of these patients who might seek euthanasia or assisted suicide are suffering from depression, could be treated and helped, and they might not request it, if that were the case.

On the other hand, if I am dying, seems to me that's a good reason to be depressed.  You know, I'm not under some obligation to die feeling chipper about it.  So I'd like you to think about that a little bit.  I mean, I understand that, on the one hand, if we dealt with the depression, we might limit the number of requests for euthanasia or assisted suicide.  On the other hand, it just seems there is something appropriate about being depressed when you are dying.

Now maybe that's a layman's understanding of depression, and you are going to correct it.  But I'd like to hear you talk about it a little bit.

DR. HENDIN:  The fact of the matter is that the overwhelming majority of people who are terminally ill are not clinically depressed.  There is a difference.  That doesn't mean that they are cheerful about dying or looking forward to it, but they are not clinically depressed.

They have the same ratio.  It's about 60 percent in the highest studies that are, and they are certainly not asking for suicide, and those who are depressed aren't treated.  Now that doesn't mean that they become, as you say, not sad about dying, but the interesting thing is that those who are treated — and I could give you just innumerable examples of patients.

You don't get requests in your practice in this country, because patients will tend to assume that you — as a psychiatrist and the law, they are not going to assume that you are going to assist them with it.  But the first patient that I ever had that requested assisted suicide was referred to me by a colleague, and he was similar to a case that Timothy Quill published.

He had an acute leukemia, and with medication he had a 20 percent — 25 percent chance of surviving, and he was devastated by the news.  He was a young professional in his thirties, and a colleague referred him to me.

He couldn't even discuss it with his wife, because he was kind of resentful that she was going to be going on with her life and her career and he wouldn't.  So he couldn't.  And I saw him for a few visits where he was able to talk about it.  He decided that he would take the treatment, which was only a quarter, 25 percent.  But he also — I was able to arrange for him to have one meeting with him and his wife and meet, and he opened up the discussion between them.

Now this man did not respond to the treatment, and he lived only four or five months, but he told me that in some ways he was closer to his wife in that period in a way he hadn't been — they were both very busy pursuing professional careers — since the time they first met, and he also became closer to his parents in that period, and I was in touch with him until the day he died, and he was very grateful to have had these four to five months, even though the treatment didn't work and even though he died.

I think that people like Joanne Lynn or Kathleen Foley could tell you these examples many, many times over.  Now he had gotten very good medical treatment, that I was not providing, but we made sure he did.  So that he had relief from his symptoms.  It's not just the psychological symptoms.  It's that they know how to relieve more than just pain today, and most people can be made comfortable; and if you stay with them until the end, they are usually grateful for that fact.  So that's my sense of it.

CHAIRMAN KASS:  Gil, did you want to come back?  Peter Lawler, then Robby.

PROF. SANDEL:  Could I just ask Gil a question about that point?

CHAIRMAN KASS:  Please.

PROF. SANDEL:  I was intrigued by your question.  Is the intuition underlying it that people who are terminally ill or approaching death, that for them it is somehow fitting or appropriate that they want to die, that it eases them into it, that there is something fitting or appropriate to that?

PROF. MEILAENDER:  No.  My intuition is that there is no easing into death and that, therefore, one should — It wouldn't surprise me if anyone was depressed by the coming.  So if I am understanding you — I'm not sure — I mean, part of the thing that — In fact, what I thought you were going to say — one could say, well, it's also appropriate that they should have pain or something like that.  I obviously don't think that.  I would want to relieve that, and the example Dr. Hendin gave of sort of relieving a certain kind of emotional suffering is significant.  But you should be sad when you are going to die, it seems to me.

PROF. SANDEL:  So the reason maybe we should think twice about treating it is that it is appropriate, and we shouldn't want to lift it.

PROF. MEILAENDER:  Yes, just in the same way I feel that, if I've been married for 50 years and my wife dies, you shouldn't come around four months later when I am still dragging a bit and say, well, you know, life goes on, cheer up.  It seems to me, there are experiences in life that are profoundly saddening, and it's the right reaction to have, and I wouldn't exactly want — I mean, I don't — It was a nice example. 

I was going to say I wouldn't exactly want to relieve it.  That is not quite right either, but I am just puzzled by the desire to relieve a reaction that seems to me to be appropriate to the human experience.

PROF. GEORGE: Wouldn't we then have to sort out the question of whether depression is a matter of sadness or whether there is a distinction between sadness and depression?   I gather from Dr. Hendin's immediate response that — he shifted to the discussion of clinical depression — that he might have something here in mind different distinct from sadness.

PROF. MEILAENDER:  No, and that's why one of the first things I said when I asked him the question was, you know, it might just be a layman's understanding of depression and, were it not sufficiently sophisticated, I understand that that might be part of my problem.

DR. HENDIN:  I think the case that I mentioned earlier where I spent many hours with the psychiatrist who assisted in the suicide of a woman who was in perfectly good health in her fifties but whose son had died a few months earlier of cancer is an example of that.

I certainly wouldn't question — I don't think you ever totally get over the death of a child who dies when he is thirty.  So you are going to live with it.  On the other hand — On the other hand, you do get over the impulse to kill yourself, and just with time.  And while I don't see anything inappropriate in her being depressed or sad or even if she was both, but if she were suicidal, you would want to do something about it; and if you did nothing else but say, if you feel the same way in two years, let's talk about it, you would have gotten a difference. 

What was inappropriate was acting while she was in that mood.  You know, while you say somebody shouldn't tell you to get over the sadness, they also shouldn't tell you you are never going to get over it, so you might as well end your life, which essentially was what he did.  He supported.

PROF. MEILAENDER:  I understand that, and there's a whole half of me that agrees with it.  The alternative — and this will probably sound either offensive or just simplistic to some.  The alternative is to say, no, I understand why you feel that way; I'd feel that way if I were in your shoes; you should feel that way under these circumstances, but you ought not commit suicide, no matter how you feel.  I mean, that is an alternative.

DR. HENDIN:  I don't think — I'm never in favor of telling people you ought not.  I think what you —

PROF. MEILAENDER:  Oh, I'm in favor of it a lot of times. 

DR. HENDIN:  But not in terms of suicide.  In terms of suicide — I agree with you about other things, by the way, but not in terms of suicide.  You don't reach people by telling them that you ought not.  It's the way people try to put somebody in a hospital, saying go in the hospital because you are suicidal.  Well, the person wants the freedom to end their life.   They are not looking to go in the hospital where they won't have that freedom. 

You can reach them if you reach them by understanding that anybody who feels that way is pretty desperate, pretty unhappy, doesn't feel that life is worthwhile unless they can get relief, and you have to address them in terms of the possibility of that suffering being relieved rather than the fact that it's wrong, that it's going to hurt their children.  Part of being depressed is that you don't care about those things. 

So in that sense, you can't deal with suicide simply as the fact that it's morally wrong alone.  That is not an approach that is usually successful.  I agree with you totally on the other thing, because you couldn't be a parent and not have the feeling you ought not.

When you were saying it, it reminded me of when my children were young and were watching television, and I told them that my wife and I agreed that there would be no television during the school week.  So they went ahead and took it to their class, and the class and the teacher voted unanimously that their parents were wrong.  Fortunately, it wasn't total participatory democracy.  So nothing changed, and they both did better in school.  So it isn't that I disagree with you.

CHAIRMAN KASS:  Before we go next in the queue, I think, since Gil's perplexity on this is probably fairly widely shared, not only in this room but in other places, let me just push further.

How solid is the distinction between clinical depression and just very, very sad appropriate to a situation?  This is an important matter here, because if you make something into a medical condition, then you think about it a certain way.  If it is simply a profoundly disquieting response to life experience, you treat it another way, and maybe that is a distinction which, if Mike Gazzaniga were here, he would say, that is a distinction without a difference; it's really — you know, the brain is in a certain way, regardless.

DR. HENDIN:  The difference between sadness and clinical depression is very —

CHAIRMAN KASS:  Let's say grief, serious grief and clinical depression.

DR. HENDIN:  Yes.  The difference — there are numerous differences, but the duration of time is one of the differences.  In addition, there are symptoms of depression that you must meet, and they are not what you just see in cases of sadness.  Sometimes where you think somebody would be depressed but they are not, and they may want to die for other reasons than being depressed.  So that's another issue we could deal with.  But there is the depression itself.

I mean, you don't see the kind of total and global insomnia.  You don't see the resort to substance abuse, because of the need for relief.  You don't see the changes in appetite, in energy.  A lot of different things have to be met, and a fair number of those criteria have to be met.

Now with regard to some of the other things, having worked with suicide a long time apart from just suicide where people are wanting to do it at the end of life, and the few cases that I have seen I always suspected something that is going to be confirmed by a group in Oregon. 

It is an unpublished paper that I got to see.  I don't think I would have got to see it if I hadn't been invited here, and people knew I was coming here.  So they wanted me to see different positions and different points of view, but it is a paper that indicated — Somebody did a study of cases that requested assisted suicide and were helped in assisted suicide in Oregon outside the legal system, and they interviewed the families of a large number of these people.

The thing that came out in it is that the people at the end of life that asked for this were not suffering terribly, but they were people who had known for 30 years, 20 years, 15 years, 10 years, that when the end of life came — that when they were near the end of life, they would want assisted suicide.  They would want to control their deaths, and they were people who had throughout life an inordinate need for control of circumstances, didn't like the feeling that they would be needing help in some situations.

That's a separate problem than just depression, although depressed people often make conditions for life:  I won't live unless this happens, that happens, this happens in my job.  That kind of need for control is something that I have seen in suicidal patients throughout the years that often distinguishes them from depressed people.

The truth is that, if you are sick at all, you have to surrender a certain amount of control when you do need somebody's help.  But if that's the case, we would be legalizing assisted suicide for a problem of a certain small percentage of the population that needs to control every circumstance in life.  Thank you.

CHAIRMAN KASS:  Peter Lawler, then Robby, and then Alfonso. 

DR. LAWLER:  So I thought your presentation was basically very optimistic, almost in spite of itself.  It seems to be your opinion that almost nobody who is terminally ill who has physical pain and depression reasonably under control would want to commit suicide, except for that small percentage of the population you were just talking about who have this desire to die a free death or something.  And today, we can do better than ever in controlling physical pain and psychological distress, and things in these two areas will get better all the time.

So the more patients and physicians know about what we can do in terms of how palliative care, the less enthusiastic they become in terms of assisted suicide and euthanasia.  So that sort of enthusiasm in our time turns out to be based either in ignorance or a willful misrepresentation of the facts.

So in this area, the doctors who have been educated are ahead of the public.  It's always good news to talk in terms of being ahead of the public.  It means in the long term on this issue we who are against the Dutch law or the Oregon law will win.

So all we have to do is fend off these terrible laws in the short term, because in the long term the truth is on our side.  Is that a correct statement of the facts?

DR. HENDIN:  It's a view I share, whether it's correct.  We are either both right or both wrong, but, yes, I think that if you don't have legalization for 10 or 15 years, there's a good chance the issue will become irrelevant, and that's a position that I come from, is that I think — In addition, while I think it is necessary to have good end-of-life care, I have a more parochial view, that I work with the problem of suicide, and I think no suicide prevention measure for the elderly would be more effective than good end-of-life care.

So I have a special interest in that, just from what I have spent a lot of time in my life working with.

CHAIRMAN KASS:  Robby, Alfonso, Ben and Janet is what I have.

PROF. GEORGE:  Thank you, Doctor.   I want to make sure I am correct about a premise that needs to be in place for a couple of questions that I have to make sense.

Am I right that the most common motive for suicide is depression?  Are there other motives that are equally common?

DR. HENDIN:  Most people who work with it wouldn't say it's the most common motive, but it is — for a lot of reasons that I hesitate to go into, it is certainly the condition that most accompanies depression.  It is the highest risk factor for depression.  So it's a major risk factor.  Other things enter into it.

PROF. GEORGE:  You mean risk factor for suicide?

DR. HENDIN:  For suicide, yes.  It isn't — it can be that the suffering of depression per se is the thing that somebody sees that I need relief from.  Usually, other things have to accompany it, because the vast majority of depressed people don't kill themselves.

PROF. GEORGE:  If you remove depression from the equation, would most cases of suicide not have happened?

DR. HENDIN:  I don't know about most, but certainly a large number.

PROF. GEORGE:  A large number?

DR. HENDIN:  For instance, let me just give you one example of another factor.

We are honoring this year a Swedish psychiatrist who did a study of what happened in Russia under perestroika where alcohol became almost unavailable,  It was taxed in such a way that people didn't have it.

The drop in the suicide rate was dramatic.  Now nobody is suggesting we are going to back to prohibition, but alcoholism complicates — or not alcoholism —  Substance abuse complicates at least 50 percent of all of these cases. 

So to say simply that one factor — and the motivation for suicide can be relief from other things than depression.  People who are hopeless  don't feel that there is going to be any change.  People who are desperate, who feel the need for immediate relief from their condition, are much more at risk.  People who have high anxiety levels with the depression are much more at risk.

So as I say, nobody would question that, if you could relieve depression per se, you would do something.  On the other hand, if you don't relieve the accompanying conditions, it won't be enough.

PROF. GEORGE:  Okay.  Good.  In the Oregon case, do we have anything that we can hang our hat on as far as reliable data is concerned about the percentage of people who are legally assisted in suicide who have been referred for psychological or psychiatric examination to screen out depression and related factors?  Is that 90 percent as a ballpark figure?  Would it be two percent?

DR. HENDIN:  I quoted the figure, and of the ones who — of the first some 100-some-odd cases that were referred for palliative care consultation.  I would have to look it up on my own slide, but it was a very small percentage, and even of that percentage it was 15 or 20 percent — I think it was even less — nobody knows whether they actually went.  It means the doctor merely suggested that they should have a palliative care consultation.

PROF. GEORGE:  Okay. 

DR. HENDIN:  And that was about — as I say, it was somewhere below 20 percent, and it's in one of these slides.

CHAIRMAN KASS:  Thirteen percent.

DR. HENDIN:  Thirteen percent.

PROF. GEORGE:  Okay. 

DR. HENDIN:  And the condition with regard to psychological consultation, as I said, The Netherlands have moved down to three percent, and I think the figure for psychological consultation in the last figures — that, they do publish in the Oregon report — is also below 20 percent.

PROF. GEORGE:  Okay. 

DR. HENDIN:  It has moved down steadily, from 50 down to somewhere below 20.

PROF. GEORGE:  Now can you tell us whether there is a significant difference in the success rate when it comes to treating depression as between terminally ill persons who are suffering from depression and for whom that is part of a suicide risk — between terminally ill patients and non-terminally ill patients?

DR. HENDIN:  The data that we have so far indicates comparable success rates in treating —

PROF. GEORGE:  Comparable success rates.  They are not a significant distinction?

DR. HENDIN:  Yes, but I wouldn't say that we have enormous amount of data from it.  So I wouldn't say that it is a proven fact, but those who have published on it, those who are working with terminally ill patients claim that they are having approximately the same success.

PROF. GEORGE:  And finally, to shift from depression to the question of pain, do we know of documented cases and, if so, do we know how many documented cases do we have of suicides, legally assisted suicides, in Oregon that have been motivated by untreatable pain, or effectively untreatable pain?

DR. HENDIN:  We have different studies with different results with regard to it.  The studies I cited, which were often families interviewed afterward, they showed a high degree of unrelieved pain, and a higher degree since the Oregon law went into effect.  I mentioned that.

A lot of the studies that are kind of odd by the advocates indicate that most of the people that they see are not suffering or in pain, which raises the question of why they are assisting them in the suicide, if they don't have any dramatic symptoms, why they are doing this.  But there's the sense that they feel that, if the person requested it, that's really sufficient if they can justify that they meet certain qualifications.

So the data is different.  Last Acts found that nursing home patients in Oregon were getting very little pain relief.  And as I say, if you read some of the papers from the advocates in Oregon, they claim that most of the cases they are seeing are not in enormous pain, and the same person who is about to publish this article that indicates that they were often people who wanted to control the end of their life, who is an advocate of it, claims that most of them were not in pain.

PROF. GEORGE:  Thank you.

CHAIRMAN KASS:  Alfonso, then Ben, then Janet.

DR. GÓMEZ-LOBO:  I have a clarification question.  I want to understand as best I can what is going on in Oregon, The Netherlands and in the deeper problem.

My question has to do with the following.  The public justification of euthanasia and physician assisted suicide is usually autonomy.  It is the idea that human individuals, autonomous individuals, have a right to determine or to control, as you say, the way that they die.

Now the information you have presented to us seems to suggest that that is precisely what is not going on.  In other words, there are these problems of — well, not only involuntary euthanasia or nonvoluntary ones, but there is the problem of depression.

First, I would like to know whether I am right on that.  But second, I want to know, do psychiatrists try to "measure" the degree of autonomy and freedom of someone who is depressed?  In other words, is there a point in depression where you can say, clearly say, this person is not making an autonomous decision, this person is really so encumbered by his or her problems that the decision is not the kind that you would hope people in a libertarian picture of human nature would make?  Thank you.

DR. HENDIN:  With regard to the issue of autonomy generally, I don't think the issue is even primarily an issue of depression, although it is a big part of it.  I am addressing it, because it's the part of it that I am best qualified to deal with.  But if all you have available to you is that you are going to have unrelieved suffering and to hasten death, and you are not dealing with a physician who knows how to relieve that suffering, I would contend that you don't have autonomy.  That's not much of a choice.

It's such a choice that most people are going to say, well, if all I am going to do is continue in the way I am and nothing can be done for me, and the other alternative is I can get immediate relief, it may look like they have a choice, but they don't because they are not being given other alternatives. 

That is, to me, the bigger problem, and that is a problem in the palliative care referral as much as it is an issue of the referral to a psychiatrist. 

With regard to the second part of your question, by the time somebody has a diagnosis of depression, not the sadness that we were speaking about earlier, one of the key features of depression is the inability to see choices and alternatives.  Everything tends to be seen in black and white terms.

So I don't think that most psychiatrists would feel that anybody who met the diagnosis of depression is going to be — now that doesn't mean that — that doesn't have total implications with regard to what you do, but wouldn't feel that anybody who is clinically depressed and meets the criteria is capable of an autonomous decision, because that is the nature of the condition, is that you don't see any possibilities for anything.  You don't see choices or possibilities.

CHAIRMAN KASS:  Ben Carson?

DR.CARSON:  Dr. Hendin, thank you for that talk.  That was very nice.

I would like to know what you think about who should determine the level of palliative care.  The reason I ask that question is, of course, you could be talking about just pain relief or you could be talking about providing excellent pulmonary, toilet, taking care of decubitus ulcers and, therefore, preventing sepsis, and really good palliative care is going to be an extension of life, and to what degree are patients told that there is different levels of palliative care, and some of them will result in prolongation of your life, if they are not interested in prolongation of their life but they don't want to commit suicide?

DR. HENDIN:  My feeling would be that anybody who is requesting assisted suicide should see an expert in palliative care, unless the physician there treating is one of the minority of physicians who is already expert with regard to it.

I think — I don't think that anyone can make and give you something that is simply designed to force you to extend your life, if there is a treatment that is going to do that.  I mean, you are not allowed to continue somebody — I mean, somebody asked me in the meeting, talking before this meeting about this movie that has created such controversy about it.

Well, technically, I mean the movie is confused, because you are not allowed — A person can refuse to be on a respirator, and the hospital is required to remove you from a respirator.  In practice, the situation is a little more nuanced than that.

Most hospitals have learned that people who, let's say, are quadriplegic — their immediate reaction is they want to die, and technically if they are on a respirator, by law you have no choice but to do that.  In practice, they don't do it, because they have learned that, if you can wait a month or wean the person from the respirator, which may not have been possible in the case that was in that film but is possible, let's say, in Christopher Reeve's case where we know there was some impulse in the reverse direction.  But once you are weaned, you are apt to feel differently.

So they tend to ignore the law, and nobody ever complains afterward.  So the situation becomes somewhat nuanced.  But let's say you have somebody like this lady who was probably — possibly never going to be weaned form the respirator.  Had she wanted to end her life a month later, the doctors would have — I mean, in that case of that film there was no psychiatric consultation, and this was supposedly a modern hospital. 

It was just — and she developed an ulcer almost immediately, when any modern hospital, they move you around, and the likelihood of developing a quick ulcer are almost nil.  But she would have been entitled to be removed after a month, and the hospital would have agreed to that, and this hospital would have had to agree right away that they weren't doing anything to make her feel better.  So they would have had to.

So the situation becomes somewhat nuanced with regard to it.  I mean, even — people usually are willing to live longer, if their living longer is going to be comfortable for them and productive, and you don't know that until you relieve the symptoms.

Strictly speaking, even in hospice care you do things that will relieve symptoms, and may prolong life.  It's a judgment call in each case.  But I would like to see that judgment made by somebody who is knowledgeable about all the alternatives, which most physicians currently are not.

CHAIRMAN KASS:  Janet Rowley.

DR. ROWLEY:  I have two questions and  very different questions.  One is pretty straightforward, I think, in terms of do you think there are any circumstances in which physician assisted suicide is justified, and what would those be?

Then the other question is:  In the society with limited resources, which are continually becoming more limited for so called discretionary funds, the kinds of programs you seem to be advocating can only occur if we make choices and, unfortunately, in our society many of these choices are to support the increasing vocal elderly population as compared with young children who really are the future of this country.

How do you see weighing the choices that our society has to make in this serious issue?

DR. HENDIN:  Well, let me answer the first question first.  Justification is a funny word in this situation.  I have often tried to find out what was the movie I saw as a child where somebody is being tortured and burned to death by some tribe of savages, and a friend of his is in the woods in the distance, and to relieve his suffering shoots the fellow so that he dies quickly.  It was a movie made from a Cooper novel?  Okay.  Now you have given me the answer.  Thank you.

Now I could give you examples that are more reasonable in life.  There are situations where — in combat where somebody is — half their body is shot off, and they are going to die in a few minutes, and you have nothing that you can do, and somebody ends their life because there is no way of relieving that suffering.  But in practice, that is not true in virtually any situation that you can think of, if only because of something that some other people mentioned.  It's possible to sedate somebody.

Assuming you couldn't relieve the suffering in any other way, yes, I wouldn't — bobody is going to punish you for having done that, whether — so people would feel it was justified.  But one doesn't usually make law or policy out of that kind of situation.

With regard to some of the cost issues, the biggest cost issues had to do with keeping people in intensive care units on life support systems that were going to die in days, and the costs of being in intensive care units are enormous compared to anything else. 

Palliative care at the end of life is minimal compared to that kind of cost that you have.  I think that people now can request to be  — not be kept on life support, and that all you are doing is prolonging the dying process.  So people have that choice, and most people are comfortable with that choice. 

People may be less comfortable if a surrogate makes that choice, but those are issues that we decided we had defined, I think, correctly, we weren't going to get into all the details of that.  But those are legitimate concerns.

I think we are already beginning to make certain choices with regard to care.  You are not apt to get a heart transplant if you are in your seventies as opposed to somebody younger, and those are choices we are going to have to make.

I don't think the choice of making life comfortable in the last months of life is going to be that prohibitive, but even if cost is an issue, I would hate to see us not do some of these simple measures that can be done, just because it might be cheaper to end somebody's life. 

I think I would rather see society address as a problem the fact that physicians aren't trained to do even simple measures.  I mean, there is a case that was published in a book that Leon contributed to in which a lady was in excruciating pain from — she was on medication.  She was dying, and the doctor was prepared to end her life, but he called a Dutch doctor who in his own region is a sort of pioneer for palliative care, and that doctor hadn't realized that the medication she was on — she was not too articulate, and she couldn't express herself well — that the medication she was on was causing intolerable constipation, and that was responsible for her abdominal pain.  Once he relieved that, the whole situation was different.

So sometimes the measures are relatively simple, but the difference between what palliative care doctors know and what the average physician knows has been enormous up to now.  So I think everybody is going to — Oregon may be addressing it in ways that are a little bit too rigid. 

You're trying to say for this condition, that this is covered for so much money, this not.  I don't know whether that can be done. 

It's kind of interesting that they are doing it, because the Dutch have something of the same kind of mentality where they think by regulation you can almost deal with all problems.  So that if you are in academic life and you are a professor, you are expected to have so many references in articles you submit to publication.  If you are an associate professor, it's less, an assistant profess still less.  That sort of has no relationship to the subject.

When Einstein published his first paper, there were no references.  So I mean, it doesn't fully make sense, and they do the same thing with regard to the leave you get if somebody dies.  They define it whether you get a day, a day and a half and whatever based upon whether it's a parent, a wife.  But it's conceivable that somebody who is not your parent or your wife or whatever is closer to you, but they somehow think you can define it in that kind of way.

So Oregon's health care system is unique in the way they are trying to do it, and I think they need a little more flexibility than that in the system.  Certainly, the cost is an issue.  And as I quoted this Dutch doctor, he felt that the cost was going to be responsible for people just being put to death to avoid the cost, even though he regretted it.

DR. FOSTER:  May I just make one comment?  One hopeful sign may be in terms of palliative — it's not — What I'm going to speak about is not exactly related to that, but the accreditation of all hospitals now require documentation of relief of pain.  You can lose your accreditation from the JCHO if you do not document this.

Now this is usually in acute cases in the hospital.  It doesn't have anything to do necessarily with the end of life, but because all house officers now, for example, carry cards with the exact — you know, the dosage and the relative amounts of narcotics that may be needed, it's much easier to relieve pain now and to have information about that than before.

My view is that, because that is necessary in the acute hospital, that when these physicians go out into practice, they have the experience of pain relief that might be applicable under these circumstances.  So I think a modest optimism about this issue.

In addition to that, most hospitals now have palliative care teams which the residents rotate through.  Now they are not going to be — we can't train everybody to be a world expert in terms of palliative care, but the general principles of presence, of comfort, of talking to patients and so forth with pain relief, I think, are going to be more widely experienced than what you have sort of hinted at here, just because of the fact that you can't have a hospital now if you don't do that.

DR. HENDIN:  I think, though, that — I agree with you completely, but the JCHO was persuaded to do that only in the last six or seven years, and the people who are involved in pain — it took a while.  But that's where things have changed.  That's part of it.  We are trying to do the same thing to make the standards include education and ability to deal with depression the same way.

We have been using what happened with the people who got that done in pain as a model for what was done.  So we are hoping to be able to do the same thing.

CHAIRMAN KASS:  We have run slightly over, but we've actually got Charles and Paul.  Maybe, unless there is a dialectic involved, maybe the both of you would make comment, and then Dr. Hendin could respond.

DR. KRAUTHAMMER:  No dialectic.  Just a simple question.  I am encouraged, Dr. Lawler, by your optimism that in 10 or 15 years the truth will out, and the problem may disappear.  On this Council, that's a pretty unusual situation to find ourselves in, where we are generally in the mode of sticking our fingers in the dike and hoping that we are going to hold off things for a year or two or five. 

Are there other jurisdictions in the world that might be going toward assisted suicide?  In other words, in that intervening 10 or 15 years are we just going to have Oregon and The Netherlands or are there other countries — it's a factual issue — or states that are looking into or on the threshold of going the way of The Netherlands?

DR. HENDIN:  By the way, I may be optimistic by nature.  So maybe you need to discount that a little bit.  But I do feel that — it isn't that I don't think there is danger.  I think there is danger if we don't hold the line and if other states — California is certainly going to be in play right now, and one doesn't know what will happen, and Vermont is also going to be considering it.

So far whenever the states have looked into it, not only — the more they know, not only have they turned it down.  The states that didn't have laws prohibiting assisted suicide ended up passing them.  So since all of this has happened, about nine more states have such laws.  But I spent — with Dr. Foley, we spent a week in Hawaii a year ago, and it was very close, and we thought we made a difference, and I see it was defeated again.  But California certainly is a danger, and so is Vermont.

With regard to other countries, Belgium recently passed a law permitting assisted suicide over the opposition of the doctors in Belgium, which is exceptional.  And it's a conflict there, because a lot of doctors are just refusing to cooperate with the law, and what will happen we don't know.

Switzerland has technically always permitted assisted suicide with a law going back to the beginning of the century, and that law was designed for entirely other purposes.  But now people are taking advantage of it to try to come to Switzerland and have their lives ended that way, and the Swiss are trying to limit that.

So I wouldn't say that it is — what was the expression? — a slam dunk.  I wouldn't say it's a certainty, but I think that, if you keep presenting it to people, that you give them these other choices and that the issue isn't that you are taking away some right that they have but you are giving them a right that they don't have, which is essentially what the Supreme Court suggested, or at least five of the Justices subscribe to that they have a right to that end-of-life care.

I think that is the better way to go, and how you frame it seems to have a big deal, a big effect on what eventually happens.  So I think there is reason to feel that — I was excited seven, eight years ago when the AMA decided to educate doctors with regard to it, and not that it mattered that the AMA noticed, but I had this dialogue with the President then that I had lapsed my membership for 10 years and I immediately joined just as a personal way of expressing.

I was actually very pleased to be invited here, because just the fact that you are dealing with end-of-life care issues is, to me, a very positive step.  We are in our foundation trying to do something, but there are foundations that are doing more than we.  We are limited in the direction or dimension we are doing, but we are doing something, and there are others that are doing more.

I think that the more people know about it, that is possible that that will change.  Certainly, it has happened in the states.  Congressional committees in the states that were absolutely for it — in Maine the polls taken before their vote, before their referendum — and of course, referendum is the way you are going to get this, because the public lags behind in the knowledge. 

So I'm not in favor that that is the best way to decide public policy, because slogans are used to decide it, and people aren't informed.  But the Maine Medical Association promised the public that they would do more for palliative care.

I think the best thing we can do is to see to it that a lot of these promises are kept, because sometimes they make these promises out of the fear, and then there is no follow-up on what they do.  Then you will lose.  If the medical associations don't stay on top of this in each state, they will lose.

I was afraid of that for Hawaii, that we persuaded them — or they were persuaded themselves that what they needed to concentrate on was end-of-life care, and they promised it to all of their group.  I don't know.  I don't know the facts, but I think the thing you want to do is check up on whether they are following through on those promises.

CHAIRMAN KASS:  The last comment to Paul McHugh.

DR. MCHUGH:  My friends have noted that I have been pretty unnaturally quiet here today, but that is because I am always your pupil on these matters and have once again been illuminated by what you had to say, and particularly how you responded to the important questions that have been raised by the Council here today, which all have been very interesting to me.

To develop a last question for you, just to hear how you would deal with it, this comes out of my experience over time with this question that has been developed here in the Council, namely, the distinction between the meaningful moods that relate to life circumstances and the disordered moods that you and I know as depression.

So often a confusion of these two things or even the admixture of these two things turn up in clinical situations and are difficult for not only families and people observing from the public but even difficult for doctors and investigators.

My experience with this came in three interestingly similar and distinct areas of neuro-psychiatric research.  We at Hopkins were very interested in three conditions, in each one of which a disorder of mood of the kind that we think of as pathological turned up, but couldn't even get through the NIH, at first, research proposals to study that because in each of these conditions it was believed that the depression was to be expected, even though we had demonstrated that equally disordered physical conditions did not produce depression in other people.

Those three conditions were Huntington's Disease, cerebral vascular stroke of particular locations, and AIDS — cerebral disorders with AIDS.

In each one of these conditions we saw a very large number of patients who had clearly disturbed reality testing because of their depressive state, and in each one of them we wanted to launch research programs.  And every time the first response to our RO1 programs was what are you talking about, this is silly because everybody who has Huntington's Disease, cerebral vascular stroke or AIDS is to be expected meaningfully distressed.  It took a good bit of time showing how these were special. 

Now you have made a point that suicide is not simply an outcome of depression.  There is not a one to one either that depressed people get — that commit suicide or that the only suicidal things are depressed patients.  But you perhaps could tell us whether you think that contemporary neuro-psychiatric research has something ultimately to offer us in relationship to the depressed patients, showing, for example, hypothalamic disorders or things of that sort that go along with the depression that could give those individuals that want a neural basis for their determination, not just the psychological history and mental state that you and I are familiar with to make that distinction for them.

Where are we in relationship to suicidal patients in relationship to the neurochemical, hypothalamic, other mechanisms that could allow us an even stronger place to offer our therapeutic enterprises?

DR. HENDIN:  Well, that is a big subject, but let me take at least the most significant example that people seem to be working on today. The experience that we have had is that a lot of people have suicidal ideas, and maybe a majority of the population at some time has thought of suicide, and there are a lot of people who are depressed who are not suicidal.

I was indicating certain conditions that went with it.  But probably the trait that has had most scientific documentation and is traceable to brain regions has to do with impulsivity.  So that people — Most people will have the thought, "Wouldn't I be better off dead in this situation?" but they don't act on it, and impulsive people tend to be people who act on it.  But the trait of impulsivity seems to be both biological and genetic, and there's a lot of work that's being done on that right now.

Now that's the one that I'm most familiar with.  We get grant applications for it, and one of the advantages of being in my position is I get to see what people are doing research about.  So that the research is moving very much in that direction.

CHAIRMAN KASS:  Thank you very much, Dr. Hendin, for a wonderful opening, and also thanks for your sterling work in keeping the country as a whole informed of these practices. 

We are adjourned.  Let's take 15 minutes.  At five after we will start with Joanne Lynn's presentation.

(Whereupon, the foregoing matter went off the record at 10:47 a.m. and went back on the record at 11:14 a.m.)

SESSION 2: AGING AND CARE-GIVING: LONG-TERM CARE AND NEW PATTERNS OF DECLINE

CHAIRMAN KASS:  Could we get started, please?

Session two of Aging andCaregiving: Long-term Care and New Patterns of Decline.  And in this session we go back explicitly to the issues of long-term care that we have been considering for some time.  And we're very, very fortunate to have with us Dr. Joanne Lynn, who for more than 25 years has been among the nation's most vigorous physicians, researchers and advocates for proper care for the elderly and dying.

Joanne was actually an Assistant Director for Medical Studies in a previous Presidential Commission on the study of ethical problems in medicine; was for a dozen years the Medical Director of hospice of Washington; has been working as a clinician in the care of elderly and dying patients; and is now the Director of the Washington Home Center for Palliative and Care Studies.  She is also a senior researcher of the RAND Corporation at the Center to Improve Care for the Dying, and the co-author of the RAND Report, which you have in your briefing book.

Joanne gave a presentation to the staff, oh it's several months ago I guess, which was really quite eye opening.  And for that reason, among many others, we were very eager to get her to come and make a presentation here. And she's, I think, going to be the first physician ever to present to this body who is going to actually talk to us without slides.

So welcome to you, Joanne, and we look forward to your talk.

DR. LYNN: Thank you.

It's a pleasure to be among you.  I've certainly worked more on the staff end of these sorts of endeavors than at the table.  So I really thought that this would be an opportunity for you to try on some ideas.

I'm very pleased to be in the company of three distinguished thinkers and leaders with well-honed ideas and bodies of work that you will spend the rest of your day with.

I must tell you that at least with regard to the things that I'll be guiding you through, I am something of a junior scholar, having put these things together pretty much in the last decade.  These are ideas that have not had the merit of longstanding in the society or a lot of data behind them.  They do have the merit of being consistent with all the data, and I think better ideas than we have mostly been working with.  But I would expect that one of the things that I'll end up with here is charging you all to carry them forward and keep working on developing them.

One of my themes is that we need better ways to think about the end-of-life and better categories, better language.  And to that extent, I've given you just a two-page outline and you have the RAND White Paper.  Those of you who want to get into any of these ideas in further detail could use the book Sick To Death And Not Going To Take It Anymore! where these ideas are developed a little further.  But to a large extent there isn't a lot out there beyond this, so I'm looking to you to help to do that.

I'm going to walk you through some facts and ideas and then try to save lots of time for discussion of what this Council's role could be in shaping how the United States faces the challenge of large numbers of us coming to the end-of-life and aging at the same time, and having the opportunity to live to old age.  That's the first theme.

Do you all have the two-page handout?  Okay. 

So the first thing that I wanted to take up was just the obvious demographic shift, but I think that there are some facts about it that we mostly dodged and we don't really quite take account of.  One is that almost everybody who makes it to 65, makes it to 80 or 85.  And that now about 4 out of 5 of us make it to 65.  This wasn't true even when Medicare passed.  We had lost so many people from the depression and the wars and so forth that even though the life expectancy wasn't a whole lot less, there were just many fewer people who made it into old age.  Now almost all of us around the table not only expect to make it into old age, we will feel quite thwarted and unfairly treated if we don't do that.  But it means a very different way of coming to the end-of-life. 

And if you have a glance at the table on page 2 of the White Paper you'll see the kind of extraordinary shifts that this means.  At the turn of the last century, the average woman who made it through infancy died in a complication of childbirth or at least in her middle years.  The average man died in the complication of his employment.  And we've forgotten just how many people died at work.

The people who escaped those, there were only two major chronic illnesses:  tuberculosis and mental illness.  We mostly pushed those folks out of the heart of the community into some other setting.

So the community was pretty much made up of able bodied people. Dying was quick from the onset to death, was ordinarily very rapid.  If you read Osler's textbook from the turn of the last century, you'll see the chilling statement that an adult who presents with full blown diabetes will ordinarily be dead within a month.  Think of diabetes as an acute illness.  You know, it's just so far beyond us now.

But it does mean that we now mostly get to die with very serious chronic illness. And it's only a very small number of patterns.  We basically either have cancer, we have heart or lung disease, a few other organ system failures although numerically they're much smaller, or we have various combinations of frailty including dementia.

Half of the people who make it to 85 will die with serious cognitive failure as part of their final course.  Nineteen out of 20 people who make it to 85 will have serious mobility problems as part of