THURSDAY, MARCH 3, 2005
Aging and Care-Giving: Lessons on Assisted
Suicide from the Oregon and Netherlands Experiences
Herbert Hendin, M.D., Medical Director, American Foundation
for Suicide Prevention
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
There may have been a second part to your question that I've
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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.)