Q: How is the Marjorie
Wantz case different from Sherry Miller's.
Caplan: The Wantz case takes us into an area that I don't think has been
adequately understood by people that have been trying to follow the assisted
suicide/euthanasia debate because it gets us to the question of how do you
assess competency and what is competency. Wantz had severe mental pain and
there is no doubt in my mind that she did and that was real to her and very
disabling to her. But at the same time she had a long history of psychiatric
and psychological problems.
When you are dealing with assisted suicide, one of the things that I'm
dreadfully afraid of is that you will bring out people who are depressed who
have mental disorders, teenagers who go through intermittent depression and
you're going to find them coming forward and saying I can't go on any more.
When we think about assisted suicide, I don't think we have in mind
helping people who are depressed or despondent seek death from a doctor. Maybe
Jack Kevorkian is, I'm certainly not. And I think most people who are even
proponents in this area don't want to get into anything like that, but trying
to say, Ok if we're not going to use terminal illness as the cut off, if you're
not passed that definition of terminally ill we're going to move it over into
some notion of sufficient suffering or sufficient despair. The realm of mental
dispair is certainly as large and gaping as anything having to do with physical
pain...it's probably easier to manage the physical pain side of the street, so
the Wantz case makes us have to address the question do we need to include her?
Someone who has went from psychiatrist to psychologist to mental institutions.
Is she immediately disqualified just by her past? Or are we going to say, no
even so you can still make it over the barrier and have death once you finally
decide that you can no longer bear your depression.
If we're talking about those people, we're again talking about millions of
other Americans who go through life on medication depressed and often wake up
and say, I can't take it anymore, I've had it...are they going to the
obitorium, are they going to find somebody with a ....and say ok, your mental
suffering is enough. and what about the people who simply say, I lost my job,
I lost my wife, my career didn't pan out -- you know the life course I set
for myself is not what I want. I don't see anyway, if we're over on the Wantz
type of situation to stop us from going down that slippery slope.
Q: Quill would say the opportunity for assisted suicide, helped them to
change their mind, they just wanted the opportunity?
Caplan: I think it's a demonstrated fact. I wouldn't even dispute
it. But I think for many people dying, when they have the life preserver of
knowing they could end their lives by having pills or a willing physician there
to help them it actually allows them to go on. It's that sense of control
saying I don't have to take this any longer if I don't want to -- that oddly
enough allows someone to endure more and to prolong their lives. But the
problem here is that those are the physically ill and what we're talking about
here is physical pain and suffering. We're talking about the person with
cancer disseminated all thru their bones that's saying I can take it another
day as long as I know tomorrow if I want to I'm going to end my life. That's
not Wantz, that's not Miller. That's not Adkins and that's not a number of
other people that Kevorkian has helped to die. Those aren't the people that
are going to find more control by being told that the Dr. [Kevorkian] is there ready to
assist them in dying. If anything they're going to be seduced into assisted
suicide because it looks like the easy way out. The mentally unstable, the
depressed, the disabled they're not going to find themselves holding on to
another day of life as the end patient cancer does.
I don't see it like a situation like the cancer patient, knowing that you
can pop that morphine into you if the pain becomes unbearable lets you stick
with it. But knowing that you can take some pills because the depression has
finally got the best of you isn't going to make you stay on another day.
Q: What about Tom Hyde? Does he pass the test?
Caplan: I think it's possible to say that for some patients, a man like
Tom Hyde with end-stage Lou Gehrig's Disease or ALS, losing control over bodily
functions, no hope of regaining any type of control, basically being trapped as
a prisoner inside his own body, he becomes a powerful case for assisted
suicide....I've seen people with...syndrome who've had massive
strokes...they're alive inside their bodies, but their bodies are shells that
can move nothing, their brain is functioning but they're trapped within their
own bodies, imprisoned...and I think that's a terrible fate -- that is
suffering, it's not pain but it's suffering.
I think what you need to do is see if you can carve out a clear domain that
says terminally ill or end stage of completely paralyzing disabling injury then
and only then will we consider assisted suicide. Can this society make those
careful distinctions? Can this society in a sense negotiate around who fits in
and who doesn't? I'm not sure we can because I think again, the way were
structured now, the care opportunities -- in terms of home care, having an aid
come to your house and help you out, having companionship, not being isolated,
not being left alone in some rotten environment...they're not there right now.
So I think we wouldn't be able to give people yet, a fair run at the best
possible quality of life that they should have every opportunity to enjoy --
even if it's limited by disabling illness. But are there people that are so
disabled that anybody with any empathy would have to say, I understand why you
need assisted dying, absolutely and I can see that point.
Q: What do you say to [the] Wantzes and the Millers who say she shouldn't
have to live like that?
Caplan: Well to some extent, what do you say to families of people with
severe disability is we let you down. We put you into a system that bounced
you from one place to another, we put you into a system where we made it
unbearable for you as a family to care for these people, we made it unbearable
for them to live with dignity because we isolated them and made them into [a] prize
-- we're sorry about that and what we're going to do is try to make a longcare
mental health system that is decent, that people have a right to, that you're
going to have a doctor that you can identify and not see 10 of them who have 30
seconds to talk to you and then send you onto the next one. We're going to
really make it possible for you to have a decent humane healthcare system.
Instead what I think the families are being told is you're right -- that was no
way to live and you know what, we don't have much money left in the treasury
and we aren't that interested anymore in fixing up the long term healthcare
system we can't even pay for the acute care health system and you know what
else we were never that wild about older or disabled people anyway, so we're
going to do you a favor, we made Dr. Kevorkian legal.
Q: A lot of what happened with Gale was the inability to articulate
what he wanted from his doctor, and make his doctor understand that he wanted
out.
Caplan: I think one of the lessons that we can draw if you just look at
the people who have come to Kevorkian is that many of them have been saying for
some time that they need counseling, they need support, they need to have
someone to talk to them who has some expertise in depression, in pain control,
in dispair in serious disabling illness. We don't train people to do that in
medical school -- where are these people supposed to come from. We have a
health care system too that is paralyzed by its inability to have
continuity...a lot of people going to the clinic or to the office in the mall.
Doctors don't know who these people are, they have no idea where they live,
where these people come from, as I go on rounds at U of Penn, I often go up to
residents and say, "Do you know the religion of that patient?" No, you
don't...they're terminally ill -- it's going to be a lot more important to know
what their religious orientation is than to know something about their kidney
output which is going to get poor, guarenteed.
The whole system is set up to treat people as sort of portable diseases and
when the disease finally wins out through either disability or terminal
illness, the system backs away and says that's a lost cause, let's move onto
the next one and then we leave the clean up activities to anyone who happens to
volunteer to go in there and do something. We don't have any system for dying
in America. We have a nascent hospice movement that's going to be cut off as
assisted suicide takes hold because people are going to say, no reason to
expand that service, we've go assisted suicide. The fact that people come and
say, I'm alone, I'm depressed I don't understand what to do with my life--I'm a
middle aged woman with a lot of pain and a lot of disability, my kids are gone,
what's in it for me. In a way the issue isn't really about death and dying,
it's about what makes for good living and it's about whether the healthcare
system can start treating people as persons again, not just as kidney failures
or people with cancers ravaging their livers, if we don't reorient ourselves
than the answer we've come up with is death is better and medicine can't do it
for you.
Q: What about the doctor who said death in a van is
undignified...
Caplan: Even I as a critic and very skeptical about our ability to not go
down slippery slopes with assisted suicide, have to say there's some advantage
when Kevorkian at least is paying attention to you in the back of his van as
opposed to dying quietly in the back room of a hospital disconnected from your
apparatus with a nurse only present who's just there on the Sunday evening
shift.
We've done some studies at Penn about what did you think aobut the care
that you got for your relative who died and they'll say nobody talked to me, I
didn't know anybody there, we were cared for by strangers. We aren't teaching
people the art of conversation, communication, sympathy and support and that's
what the dying need...they need to have some sort of spiritual support.
Ironically the other place that we turn in this society -- it's amazing ---
when the doctor says dying in the back of VW van -- that's no way to go, that's
crude. Well, ok maybe we should die with a spiritual counselor there -- where
are they? Have we got to the point where the only place we can debate religion
is in the school room? Or do it at the state leg...but not at the hospital or
the nursing home? Where is the presence of organized religion in America to
support the dying...to make it an all out mission of compassion. It is not
there and so when someone says better to die in the current system and I think,
what disconnect it from a feeding tube? Dying on the evening shift with the
swing nurse coming through, who doesn't know your name on a Sunday night is
that what you had in mind as more dignified?
One of the things that I"ve seen over the years is that we talk a lot in
this society about the importance of religion, about the importance of the
spiritual and theological and yet we have turned the hospital and nursing home
into a technocratic empire with the spiritual and theological really are
present. Often times when someones disabled when I've tried to get involved a
rabbi or minister or priest, they'll say well gosh I'm not prepared to deal
issues of disability and adjustment ot rehabilitation and I think to myself,
well if not you who?
Here we have, in some sense the abandonment of the American patient, the
dying, the terminally ill or disabled patient -- not by medicine but by the
institutions of society that are supposed to be there and provide the very
support that people turn to when they get a terrible injury, a tramatic injury
or face terminal illness in their own death. We disconnect it -- one from the
other. WE put them in tall towers that look like cathedrals, but the usual
staff of priests and ministers and spiritual healers has been replaced by a
group of technocrats in white coats...and people find it very unsatisfying.
In an age of managed care, cost containment, increasingly profit driven
medicine, we have less and less time for doctors to talk to patients or get to
know patients we have nothing that's happening in the training of doctors that
lets me know that they'll be any better prepared to move into that void then
those who came before them...sure it would be great if we could have Dr. Welby
back and [place] him at the beside or her at the bedside to support counsel bond and
then say good-bye, where are these people, we're not making them in the medical
school or the nursing schools we're not paying them to do this anywhere in the
health care system and there's nothing institutionally structurally or the way
we are delivering here -- more technology, more bureaucracy, more hi-tech
medicine -- that makes me think anytime soon, any of this is going to
appear?
Q: And yet some say that this is happening.....
Caplan: Well, I think it's true to say that in our intensive care units
there are many people that are assisted in dying because they get higher doses
of narcotics that put them over the edge--stop the respiration and they die...
But it's death among strangers, it's a one on one relationship, but it's a
relationship that has lasted a month, 3 months, maybe 6 months. It's not
necessarily with anybody that is a family friend, a friend of the patient that
has any intimate knowledge of who they are. In some ways the notion of pushing
people gently over the edge by the liberal use of medication is driven by the
professionals desire to come to grips with the end of life, not by anything
that the patient has talked about or maybe even understands - by the time this,
if you will, last gentle assistance is rendered -- the patient is usually out
of it at that point. Usually isn't even really there to participate any more.
So it's true, that we have a certain amount of end of life care going on
intentionally hastened by doctors at least with some certainty that they are
going to shorten up life. But I wouldn't romanticize it. I don't think its a
situation that's equivalent to hospice experience, it's usually how you manage
to disconnect technology, if you don't disconnect it somehow, it's going to
keep that person going far longer than anybody either the doctor or the patient
would want.
Q: What are your worries regarding the promise of
safeguards?
Caplan: I think people tend to think, well if the Supreme Court carves out
the right, or if high federal appellate courts carve out the right or even if
state legislatures simply say were going to let this happen under certain
circumstances that'll be it, we'll have the right and while the critics and
nay-sayers and footdraggers may have their doubts, we'll be moving forward.
The fact is it's going to be tremendously difficult to set up a system with
adequate safeguards, for two reasons: one, we're not sure what we mean when we
talk about someone being competent. How competent is that, competent enough to
figure out who you are, who the president is, to count backwards by sevens, or
more competent than that? Are we talking about someone who authentically has
held this view that they want to die for a day? A week? A month? 2 months?
How long is enough? Are we talking terminal illness? Ok, do you mean
imminently dying within hours or dying within 6 months, to predict that osmeone
is going to die within 6 months, if you gather a dermatologist and a
radiologist and tell them to do it in bad faith -- will include everybody. To
try to do it in good faith, by experts in cancer or experts in other fatal
diseases is a very tricky thing to do. Most people will tell you they can't
adequately predict whose got 6 months to live. If you're talking protections,
balances and safeguards, what are you going to do to minimize family pressures.
Say, hey gramps, you know you're really facing terminal illness, we'd like to
send our little grandson or grand-daughter to college here -- why don't you
think about that assisted suicide issue. Are we going to set it up so that the
person who dies --their estate if they use to end their life deliberately goes
to pay for hospice for someone else instead of into the pocket of family
members -- is it going to void their life insurance, what does it do to the
entire practice of life insurance surrounding the end of life?
We've got a ton of issues to think through. They range from the financial
to who's doing it, to under what circumstances and it's not going to be easy to
do.
I think the other problem with thinking about checks and balances and
safeguards is, how are you going to stop a different type of pressure. When
most people look at this they think well, what we need is bedside protections,
psychiatric exam, terminally ill, confirm the diagnosis, put in a waiting
period but the social challenge is equally there and it hasn't been adequately
discussed how are you going to stop the legislature in Albany or in Salem, or
in Springfield from thinking, hey, I'm not going to budget as much for hospice
care or rehab care, we've got this assisted suicide thing around and I don't
have to worry about that. How are you going to take the Congressman in
Washington and say, even without them to say it publicly, you really expect
us to spend more for hospice benefits or home-healthcare services for the
senile, elderly...or to find cures...do more research...these people are leaving
us. That isn't a place to spend money. I don't know what the social checks
and balances are going to be to make sure that we hold our politicians' feet to
the fire and say you can't let a crummy inadquate, discontinuous, pathetic
longterm healthcare system be the way it is just because assisted suicide has
entered into the political landscape. How to check and balance that I don't
know.
Q: Your forecast for the future?
Caplan: I think we face two scenarios with assisted suicide and euthanasia
in terms of the politics of the United States. We wind up having opposition
coming from people who despise assisting anyone in dying on religious grounds.
A fearful disabilities community who fights tooth and nail against what they
perceive as annhilation of the disabled by the able-bodies and we find
ourselves engaged in strident and fierce devisiveness in society in the form of
moral debate -- attempts to attack doctors who engage in this practice.
Attempts to ban teaching or talk about suicide in the medical school curriculum
much like we see now with abortion. So, one road lies before us and that is to
re-enact the 30 years we have had with the abortion controversy...play it out
over the next 15 - 20 years with respect to assisted suicide.
There's another road...it may turn out to be the one we take. And that is
to agree that if we're going to do this, we're going to do it slowly, we're
going to do it with every safeguard in place and we're going to make a
political commitment not to let this become an alternative to fixing a broken
inadequate healthcare system. It also becomes a path that we might take if we
can agree to let people of good will on both sides of the issue sit down and
come to terms with the notion that assisted suicide is always the last resort
-- it is never the first resort -- we've got to throw all kinds of options and
opportunities at people before we let them take this path.
I'm not sure which way we are going to go politically...but if I was
betting I would say, ten years from today, one-third of the states will have
legalized assisted suicide. Some will be debating the extension of it past the
category of person who's terminally ill. There will be some cases of
abuse...there will be documentaries and exposes about people being rushed to
death through family pressure, or neglect or just abusive physicians that
weren't that picky about following the safeguards and we'll be rethinking what
we need to do to rebolster those ...but I think it will be here and the only
question is are we going to be talking to one another in a way that is
respectful and that is sensitive to the complexities of dying, or are we [are] going
to be screaming at one another.
Q: And, the Kevorkian factor in all this...
Caplan: I think the notion that we have to engage in all-out war and that
what we must do in this debate is claim victory...may lead us down the more
strident decisive path. I would blame Jack Kevorkian for that. The fact that
we're having this debate right now and the fact that those that are disabled,
terminally ill and feel that they should be given some hope sooner rather than
later about their assistance in dying, I would blame Jack Kevorkian. So, I
think he's turned up the heat in this debate and in some ways will be
remembered as the central figure who made America grapple with the question of
assisted suicide and not allow them to turn away. At the same time, the tone
and the tenor of the debate: the theater, the politics, the stridency, the
militancy and if you will, going out on the fringe and dealing with individuals
who very few people would want to have the right to die. I think we can blame
that on him too.
As always death is a kind of tricky entity to wrestle with. So it's hard
to see what it wants to do, it's sometimes hard to predict where it's going to
come and it's sometimes hard to figure out what's the best way to deal with it.
The range of people that Kevorkian has helped die, exemplify that very clearly.
There are some clear-cut cases ...but the majority of Americans are easily
going to say, "Thank goodness that Jack was there to help." There are some
others that once these people understand what those cases are, are going to
step forward and say...he's helping them?--am I next? Are we going down some
slope that takes us to places where other societies have gone in this century
and we don't want to be? He carries both of those legacies...
END
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