Q : Before Doctor Kevorkian, 6 years ago, where was the issue of assisted
suicide?
Caplan: I think before Kevorkian began to do what he does and draw attention
to himself , the issue of assisted suicide, euthanasia, was present in our
society. It was more on the back burner. People were aware of events in
Holland. They knew that the Hemlock Society was pressing to legalize some
forms of assisted suicide and books like "Final Exit" were in the works and
people were thinking about should we give information to people who want to
die. The HIV/AIDS epidemic had led people to think about assisted suicide more
seriously. The issue was being considered, it just wasn't at the same volume,
pace, velocity as it is today.
Q: In medical circles, wasn't there a tremendous sense of secrecy, quiet?
It was happening, but very secretively.
Caplan: I think it's accurate to say that assisted suicide, hastening death
intentionally, deliberately, was something that went on every day in hundreds
of hospitals in the United States but quietly and secretly , you've got
somebody close to death and you're trying to control their pain and yet that
death was imminent. I think that a lot of doctors felt that the time to come
and push the morphine, to increase the doses to the point where you would help
the person die more peacefully and more quickly, I think that practice was done
with the utmost of discretion. It was done and continues to be done to this
day with the fear that you could get prosecuted, it's against the law, but the
main thing to do in the eyes of many has been to hasten death when death is
imminent, if you will, knowing that the morphine is going to cause somebody to
stop breathing. Maybe disguising it with the idea that you're not absolutely
certain what's gonna happen but with a pretty good idea that for terminally ill
people in a lot of pain the main thing to do is to hasten their death. I think
that practice has been there.
Q: So into that world walks this pathologist. What was your sense of him
at that point?
Caplan: I can remember pretty clearly when Kevorkian sort of came on the
scene with his first assisted suicide, Janet Adkins. I remember very well
that I knew who Jack Kevorkian was and almost everybody else I talked to did
not.
I had followed some of his writing before he became a national figure -- his
thoughts about how to get tissues and organs from prisoners, ideas he had had
about perhaps even using people who were dying for medical experimentation.
It looks to most people that Jack kind of exploded onto the scene, but his work
and his writings have been around and he's certainly popped up on my radar
screen as someone who had some interesting views. To the rest of the world he
was a nova , he was a explosion that came out of nowhere. A feisty doc that
basically said I'm gonna take on the medical establishment. I'm gonna take on
the legal establishment and I'm gonna do something unheard of. I'm going to
assist people in dying publicly above board and say that's what I'm gonna do
and then I'm going to dare somebody to come and prosecute me for it. So he
literally exploded onto the scene . He was by no means a part of the death
and dying movement as it had been known by the late 80's. And I think people
were kind of puzzled saying, who is this guy and where did he come from and
what led him to sort of stand forward and do this?
In some ways too it reminds me a little bit of the appearance of a person like
John Brown in the emancipation movement for slavery. I think John Brown kind
of blew on the scene, a guy who found a cause, we must free the slaves, and he
began to try to draw people to his side and said look we're gonna attack an
armory and we're gonna break the law , and we're gonna seize weapons and we're
gonna have a revolution in this country aimed at getting rid of slavery. When
John Brown appeared on the scene I think people said, who is this guy, where
did he come from? But his magnetism, his orneryism, his willingness to make a
public stand made him a celebrity of the sort Kevorkian is in the 'right to die
movement' today.
Q: Good or bad?
Caplan: Well, I think Kevorkian deserves credit for two things. He pushed
the issue of assisted suicide from the back burner to the front burner. There
is no doubt in my mind that this nation eventually would have engaged in a
serious heated public dialogue about the right to die that engaged all of us.
He just made it happen faster. He said I'm not going to let you look away from
this, you must pay attention here.
The other thing that Kevorkian realized was that society has tolerant attitudes
about mercy killing and assisted suicide. I think that most doctors didn't
understand that there has never been a successful prosecution of any doctor,
anywhere, for an assisted suicide. Almost no successful prosecution of
anybody --family members, friends, lay person-- for assisting in a suicide. I
only know of one case in which somebody actually served jail time. Gilbert in
Florida who shot his Alzheimer's wife and he had his sentence commuted by the
Governor of Florida after I think two months in jail.
So, Jack brought forward the idea that sounds a little glib to say, but you
can get away with it. Society is going to allow it. It's not something the
authorities are going to be able to successfully go toe to toe with and say
you're breaking the law , you're going to jail. The notion of helping the
dying leave peacefully is one that Americans have had a long standing tolerance
for well back into the sixties in fact.
Q: So what's all the hoopla about?
Caplan: I think Kevorkian pulled attention for a number of reasons. In some
sense he became a media celebrity because he played the media card. He said,
'I'm gonna do this and my defense will be publicity.' He did everything
possible, histrionic, goofy , and theatrical. He decided to do things that
would guarantee him attention as a kind of theatrical person. In this
culture I don't think I've seen a better expert at manipulating the mass media
than Jack Kevorkian and his attorney .
It also seems to me that Jack Kevorkian struck a cord because he was basically
saying look, I'm interested in going beyond the terminally ill and the
imminently dying. The discussions up to that point had concerned people who
were almost at death's door, in a lot of pain and were thinking in the name of
humaneness. Shouldn't we just kind of push them over the edge, if we're
talking days or hours, what's the point of some final minute spent in some
suffering?
Kevorkian said something very different, and I'm not sure that it's been fully
appreciated even to this day, but what he stood and said was, I believe that
medicine should engage in suicide on demand. His notion of whose to be
involved, the range of people that he's been engaged with, is enormously broad
and that shook people up. From Janet Adkins, who was told she had Alzheimer's
disease, but had minimal symptoms at the time he helped her to die, through a
series of people who had a series of disabilities and afflictions but not
terminal illness, to people with terrible bone cancer and more similar to the
types of people that some doctors have been helping to die sort of quietly and
off the books for some time.
So he exploded the issue of assisted suicide from one that concerned the
terminally ill in pain to a question of quality of life. And the quality of
life issue is one that Americans find terrifying and very divisive 'cause it
touches on many strongly held religious beliefs, spiritual ideas and even ideas
about what kind of society we are.
Q: The current trial is about two hard calls, the Sherry Miller and
Marjorie Wantz suicides. What is your sense of this?
Caplan: The court room is a terrible place to debate moral issues about
euthanasia and assisted suicide. You have advocacy in play and you have
someone like Kevorkian who says look, I want my day in court. I wanna be heard
and I wanna stand on the issues.
As soon as he gets in [the] courtroom door his lawyer begins immediately to take
every procedural dodge, legalistic out, that he can find. It's the wrong
jurisdiction, he didn't really mean it , he's carrying around carbon monoxide
to help people get out of their pain. The prosecution immediately begins to
adopt its advisory tactics. It's got copies of books about Nazi euthanasia on
the table, it's showing all kinds of displays of Kevorkian's technology. The
Thanatron immediately gets into the courtroom.
You have an interesting effort at what I would consider to be a kind of one
level up from a high school debating society type of clash. The issues are not
centrally addressed in the courtroom and it only becomes a matter of whose
gonna win. And the outcome, as interpreted by the media, is who won. When
you're talking about dying and the right to die, I think it would be fair to
say that it's hard to imagine that there would be winners . What we're talking
about here is, whatever your view is, pro or con, it's complicated and full of
nuances. And when somebody finally winds up dead, I think there is going to
be very few people applauding. How they die and whether it becomes a better or
worse death, according to their likes, it's still death. The right to die is
not a right that most of us are gonna want to run out and claim. It's not a
right that we're going to be joyous to receive in some sense.
But in the courtroom setting where the battle goes on kind of World War I
style. Out of the trenches launch these different salvos and you kind of see
whose left standing after the last barrage. All the nuance, all the moral
nicety, all the richness of what assisted suicide is really about --who's
competent? What's authentically wished for? What is pain? And can we manage
it? What is a good death? How should we die in America? It's all lost.
I see the courtroom as more like a Japanese kabuki theater, as ceremonies and
rituals and almost routines that must be acted out. And in the end the pursuit
isn't of truth and the pursuit isn't even of consensus. The pursuit is of
victory. In that setting euthanasia kind of becomes a victim.
Q: It's interesting when you watch this trial, as we enter for example the
Sherry Miller part of the case. The prosecution basically says that this is a
woman who had terrible MS, terminal MS. At some point in the future, was
unhappy with, was depressed, her physician knew she was depressed wanted her
to seek help...She wouldn't participate in her own care, she was looking for a
way out and what Jack Kevorkian presented was a stumbling block to a blind
person. Reaction?
Caplan: Well, I think no trial could make clearer what a rotten place a
courtroom is with it's goal of victory through the adversarial process in the
Miller trial. The Miller trail is very complicated. You have a woman who has
a disability, she's not terminally ill. You have a woman who has in some ways
decided not to participate in any further attempts to improve the quality of
her existence. You have a woman who in some ways gives up. This leads to all
kind of tough questions about -- did she get adequate psychiatric support or
did she have a true sense of competency, did she know what she was doing? Is
the person to decide those questions Jack Kevorkian, a pathologist who has no
training in psychology, psychiatry, mental health or anything else. Does he
refer to the right people? Is the last person that Sherry Miller needs to see
before she decides to turn the switch and end her life, someone who is the
most visible protagonist for assisted suicide in the world? Is that the right
counselor to have as you make this ultimate decision?
And I think the courtroom brings out none of this despite the fact that the
experts parade in and we hear things about depression and about disability,
and about pain control and about whether or not someone can make a judgment as
to rational suicide. None of that's gonna matter to the outcome of this trial.
This trial is gonna rise or fall on legal issues. Courts rarely are the place
to settle factual questions about whether rational suicide is a coherent
concept.
You've got to find some ruling at some point-- as has been true in the other
Kevorkian trials--to say the law doesn't apply, there's a loophole here. We
can't read case law the way it's being applied by the prosecution and so on. I
don't think any of this testimony will amount to a hill of beans in terms of
understanding either the outcome of the trial or understanding the broader
issues. And I'd say further, oddly enough, while the testimony is rich, and
the experts brought are experts, and the debate in some ways is fascinating,
it isn't what is leaking into the public mind about this issue. There is no
more recognition that Sherry Miller is not the same as some of the other people
that Jack Kevorkian has helped to die. There is no understanding that we've
moved quickly in Kevorkian's series of people that he's aided from someone with
terminal illness to non terminal illness.
We haven't even got a recognition that if you're going to allow suicide by
doctor to the disabled of the Sherry Miller sort - MS, stroke, paralyzed by
injury, many other types of congenital types of disability --you're talking
about millions of Americans. You're talking about hundreds of thousands who
face the end stages of death through cancer or some other painful disease. When
you open the door to saying yes, medicine's answer to severe disability or even
moderate disability is death, and the doctor will do that, you're talking
about an unbelievable revolution in how we do rehab medicine, what we think
about chronic care illness, how we decide to treat somebody after an accident.
I can tell you in my own experience, when I've been around when someone has
had a burn injury or a disabling injury, the first thing they ask for is death.
I've never yet met a person who didn't come out of a paralyzing car accident
and didn't say I don't want to live like this. Now many of these people
ultimately do take their lives, but many of them don't. They adjust, they
accommodate to their circumstances. If you look at the Miller case and try to
see what medicine's response would be to those initial requests from very
competent people, their brain's were knocked out of their heads, their spinal
cords were broken, or their bodies have been smashed or disfigured, they know
what their asking for. If you're going to honor those requests within days...
Believing that these people are giving you a rational response, you are going
to not treat literally everybody who comes out of an accident, a burn
situation. Your going to help them die. I can't think of a bigger change in
how we deal with severe injury and disabling injury in this country.
But none of that is coming out of this trial. It looks like another clash
between a man wearing a wig, or wearing a mortar board outside the courtroom,
or some kind of poster board, sneering at the judges, saying I'm beyond the
law. His lawyer saying yes, Jack is a man of principle, but taking every
dodge he can figure out to get out of it. The prosecution trying to figure
out how to apply antiquated case law to get this guy --knowing that no matter
what they do, the jury and judges are not sympathetic in situations where
there's been a mercy killing. But the nuance difference between what's Sherry
Miller, what's Janet Adkins, who are the other people that Kevorkian has
allowed to die, completely evaporate.
Q: So on Miller you say hard call.
Caplan: When we come to helping someone like Sherry Miller die. Not
terminally ill. Probably depressed. Got lousy medical care throughout her
life. She is an example of exactly why you are playing with fire in America
when you're talking about changing the law much beyond the obviously terminally
ill and in pain patient to include anybody who says my quality of life is too
poor. You have 40 million people with no health insurance, you got a long term
health care system that is non-existent. We have no way to pay for chronic
care of people who have disability in this country. The only way you're gonna
get it paid for is to spend down to poverty. You have to impoverish yourself to
get into the nursing home or the long term care facility. We've spent very
little time in this society thinking about how to deal with disability. We
don't like it. We isolate it. We tend to put it off in the periphery. And
now in a society that only wants to talk about rationing health care, to bring
forward a disabled woman and say yes, medicine has something for you. We will
give you suicide on demand. No long term health care system, no health
insurance, people who would rather spend time in a prison than a nursing home
is given the option. Sherry Miller is exactly where you don't wanna be in this
society if you fear going down slopes. She looks like the absolute ski lift
that will take us to a place where I think this country doesn't want to be.
Q: Why shouldn't Sherry Miller --facing a lifetime of sitting in a chair
staring out a window, whether she's depressed or not, that's pretty brutal,
or wearing a diaper--why shouldn't she have the right to opt out?
Caplan: Well, there are two reasons. I think one problem with a response that
says, well, kill yourself and we'll help you is that that's not medicine's job.
No one has said that Sherry Miller shouldn't have killed herself. No one. I
don't say that either. We can still allow for the notion that she might have
taken her own life but for medicine to adopt the attitude that it's response to
disability, and it's response to life in a wheel chair, and it's response to
somebody who says my quality of life isn't what it should be, is to hand them
a carbon monoxide mask is to give up on the goal of medicine. Is to say, oh,
well, then we don't need to do rehab any more. And we won't try and take care
of disabled people anymore. We'll just assume that that's not a good way to
live and we'll kill them.
Q: But Dr. Timothy Quill says that's abandonment. We take these people
right up to the edge and then we walk away from them. Isn't it our job to
talk to them and ease them out just as we've eased them along their
sickness?
Caplan: Well, I think some people would say, look, medicine shouldn't leave
people at the moment of their utmost need. You can't abandon someone as
they've finally decided they've had it. They can't go on anymore. But the
problem with Sherry Miller or Janet Adkins who's told she has Alzheimer's
disease and senses early symptoms coming on, they're not up to [the] edge of
anywhere. They're up to the point where the health care system has already
abandoned them and that's why they want to take their lives.
The most persuasive argument for Jack Kevorkian or anyone that's in favor of
euthanasia can bring forward is not an argument about self determination, is
not an argument about freedom or liberty or some constitutionally found right,
it is to take you to a nursing home which smells of urine, where there are no
attendants except someone getting paid three dollars an hour, where no one
visits and people say I don't want to be there. The solution maybe, well,
let's clean out that place because those people authentically don't want to be
there.
But it would appear to me that what America has to grapple with is how do we
get to the point where someone could be so fearful not of technological death,
not of pain in the final days of death, but of disability in a chronic care
setting. If we've made that environment so lousy, is the answer to say, well,
when it really depresses you enough let us know and we'll come give you a
pill.
Q: Yes...Dr. Timothy Quill talks about palliative care as the first part of
the several prong solution to this situation so that Sherry Miller or somebody
that is very sick understands that they go to a hospice, have a lot of people
around them, they help them figure it out. And an independent doctor....and
then Sherry Miller in the end anyway would have been allowed to go.
Caplan: It's certainly the case that when people talk about creating a
right to suicide, Jack Kevorkian, in particular, has mumbled a few things about
checks and balances, and more sensible souls have said let's limit it to the
terminally ill. Or at least let's say that you've got to be diagnosed by
experts in serious illness, not a pathologist but maybe someone that deals with
living people and their diseases. Let's make sure you have mandatory
psychological counseling.
Right now none of those checks and balances are in place. Jack Kevorkian , as
he has dealt with the people who have come to see him, has no mental health
training, doesn't have a long waiting period, doesn't reconfirm diagnosis
himself, and, if you will, has the biggest boulder of conflict of interest on a
par on the size I would say of the Himalayas, since he's a proponent of ending
life. That isn't the last person you want to counsel somebody, you want to
have somebody who wants to talk them out of it, not going around having a
career talking them into it.
Q: But...I watch these videotapes with Kevorkian saying, did I send you to
this doctor, did I send you to that doctor...And Sherry Miller alone he held
at bay for two solid years...
Caplan: I mean you do sometimes see Kevorkian and his attorneys say, look, we
try to talk people out of it. We make sure that we get the diagnosis
confirmed. Well it's interesting in the case of Janet Adkins, his first
patient, the local doctor said don't do this. And they did it anyway. In
other situations they've been involved in... People have said, lousy
psychiatric care, rotten psychological support. Did she ever get it? Well,
no. Even though there were noises made about getting it, it never was provided
to her.
I think it's a little disingenuous to say to you, I'm trying to talk you out of
it. People know that is what Jack Kevorkian stands for. It's like the NRA
saying oh, we're for the responsible use of guns in society. We don't mean for
assault weapons to fall into the hands of mass murderers. Or the tobacco
company saying that we're not that interested in selling tobacco to children
--you have to trust us, it's just an adult habit, we don't really care if you
start smoking until 25. It's not plausible and neither is it plausible to have
Jack Kevorkian in charge of the checks and balances that lead to assisted
suicide .
More particularly if you look at a case like Miller - she is exactly what's
wrong. She isn't terminally ill. She's already outside the boundaries of
where most people, the state of Oregon and its law. The federal court in New
York is trying to articulate some line of a safeguard. She clearly has given
up and while one can argue about the psychological meaningfulness of that, she
would need to undergo much more systematic counseling, testing and assessment
before we would say, yea, that was rational. Just sort of watching her on
videotape like some of the psychiatrists have done and rendering an opinion
--yes, I think so, no, I don't-- is nuts. They didn't know her. They
didn't talk to her . No one is going to practice, I would hope, that kind of
checks and balances. Say, we'll have a thirty minute interview and we'll
make some judgment about whether you really mean it. You've got a health care
system that can't right now give the checks and balances no matter what it did
to the disabled and the non terminally ill who might say my quality of life is
bad. Why? Because most of us don't have doctors. Who are we supposed to turn
to, who are our close and intimate friends, who know us and know we've been
down the road and know we've had it? Do you have [a] doctor like that, do I have
a doctor like that? I don't think most Americans in managed care or who have
no health insurance have anything like that.
Do the poor feel, oh, sure they'll trust in these protections and safeguards?
Has anyone come across anyone who is on Medicaid who thinks that Kevorkian's
cause is the way they want to go? Is the right to die movement full of people
from minority groups who say, yes, please, let us put the right to die in place
because we know that when we're disabled or terminally ill we would like the
mainstream medical establishment to have the right to kill us. I don't think
so.
A society with as much ageism, bias against disability, sexism and just plain
racism, added in with a lack of insurance for 40 million of its citizens and a
complete neglect of the chronically ill and disabled in terms of what they get
and how they pay for it is never going to able to say, we've got the checks and
balances, don't worry we're not sliding anywhere.
I support those who say suicide is the option of last resort. I simply look
out on the spectrum of what health care looks like today in the United States,
obsessed with rationing, trying to cut costs , indifferent to the disabled, not
worrying very much about the poor and minority, even being able to get into the
emergency room to fix [a] gun shot, broken bones and get vaccinated. And I say, is
this a system that could plausibly have checks and balances to make sure that
assisted suicide is the last resort option? In theory sure. In the real world
of American health care now? I don't think so.
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