Q: Did Kevorkian uncover the need?
Quill: I think he tapped something that's been there in a very powerful
way and tapped something that's much more important than he is. Which is this
unaddressed secret suffering that people have felt on their own to resolve.
I think the Hemlock Society taps the same thing. People that have
witnessed, been a part of very harsh deaths in their own family, people they
care about when the medical system for one reason or another was unresponsive.
And I think that is a very deep feeling within the country. One bad death even
though it may not be that frequent, affects everybody that is a part of that.
So if 20 people bear witness to that, they now are afraid. Even though the
frequency may not be that much, the effect is very large. You know when you
think about where people go late at night who are really sick. When all the
distractions are gone and all the noise is gone and their imagination starts to
wander, they go to the worst possible thing they could imagine, the worst thing
they have seen or the worst thing they could imagine. And this is where this
commitment becomes very important. They want to know and many people will talk
about this --- that if I get there and it may be very different for different
people, that if I get there -- that you'll still help me. And if that means
helping me find a way out, that you'll do that. With that commitment, most
people can choose to continue living. And choose quite happily, in a general
sense of that word -- more content and more secure.
Q: Is it your argument, then, that Sherry Miller ... maybe if she would
have known that it didn't have to be this way....instead of feeding
tubes...that if she had this option, it might have been just enough to keep her
out of those depths of depression...?
Quill: Sure. You may have to address the biology of depression if that
was a piece of what was going on, that's a very treatable element and then you
go on a search for ways to keep going and also ways that they might be able to
see a future for themselves... For example, if she was very fearful about
having a feeding tube and being in a nursing home, people can choose not to
have feeding tubes, people can chose to stop eating and drinking.
There was a wonderful story about Dr. David Eddie about his mother's death
-- she chose to stop eating and drinking and people said that's okay because
they're choosing and doctors aren't really assisting and doctors then comfort
them during that process.
You look for ways that people can regain control over their lives, to feel
like they have some choice in their lives. And again, usually when you
explore the deeper levels of this, you can help people find the reason to keep
going.
Q: Are doctors prepared to deal with all of this?
Quill: I hope so.....This is what doctors should be doing. We don't
prepare people in training as well as we should, we prepare them in the fight
for life, you know, in the intensive care unit kind of care very extensively
and we need to prepare them just as extensively in end of life care because
that's probably where we spend more time.
And many people are prepared, they'd be willing to do it if we created a
more supportive environment, learned how to pay for this kind of care, learned
how to give people the support that they need when they get to a question that
they don't know how to answer, 'Here's who you can call' and so forth.
Q: Will it work
Quill: It will work -- that if you have somebody who is thinking about
this and you don't know what to do, you make a referral to a hospice program or
a palliative care program where they can really help you do that or even take
over if you're really not up to the task. Or if that's unavailable, you can at
least get an experienced person to see this patient, a person who has cared for
seriously ill people, who knows how to relieve suffering and knows about the
best of medical care in that area, at a minimum you'd do that -- so that second
opinion becomes in some sense a life-line, a protection of patients, so that
you won't be swayed to provide an assisted death when in fact the problem was
really inadequate palliative care. That person would have to sign off on this
process. Say yes, they've excluded every treatable possibility here. Yes,
this person really understands this situation and their future very clearly.
Q: So in a way coming out in the open is a good thing for doctors
because options will exist for them as well, that don't exist now.
Quill: I think it's a wonderful thing for them. I mean it's going
to open up a whole new area of care for them to learn by. You know you go
through this with a patient. This is a very powerful one time learning
experience, good palliative care you go through you make a difference, you
commit to working with somebody closely through this process and it works out
well. They have a good death, there is nothing more satisfying than that. You
learn doing that that this is hard work, but this is the most gratifying
work we do. But the next time you're less afraid and the next time you learn,
gee I can go and talk to so and so who knows how to do this if I get stuck some
place. And that's the kind of systems of support and care for all patients and
doctors that we need to develop if we really want to make it available to
everybody.
Q: Part of what you're talking about is really knowing a patient and
what to give them. And so, how well did Kevorkian know his patients....?
Quill: There's no way he knew any of these people in a real way,
you know, they met on very limited terms and for very brief periods of time.
Q: Sherry Miller -- what's your judgement on the appropriateness of
Kevorkian here?
Quill: Again, he has no expertise and you know, these are very complex
decisions and the further out you get from imminent death, the more complex,
the more the need for psychiatric opinion, the more the need for a specialist's
opinion in whatever disorder they seem to have. The more the need for long,
long waiting periods where you work on the things that are really bothering
them. So, these are well over the edge kinds of cases...Which is not to say
that they weren't in a bad situation -- I think what's compelling about them is
that they were in a bad situation. But, I think we can do a better job
of caring for them and trying to address their suffering and that wasn't done.
Q: Marjorie Wantz. Is this his most troubling case?
Quill: Yes. No clear diagnosis. This is the woman with the ill-defined
uteran condition. Who knows what she had and what might have led to that
moment. A lot of work-up, very little diagnosis, a lot of medical care and a
lot of pain but no clear explanation, very tough cases. Often people who have
associated depression or anxiety disorders and really need long term
commitments and hard work with doctors and this is not appropriate for them.
Q: If you were testifying, what would you say he did wrong in that
case?
Quill: He didn't have the expertise to figure out what was going on with
the patient. Was there adequate palliative care? Was there adequate diagnosis
and treatment? Was there adequate psychiatric assessment? I think none of
those things could be met with any standard, any reasonable standard.
Q: He and (his attorney) Feiger say this is the best case, because this
is a woman who had pain, no symptoms...was going to live her life like
that...she is absolutely [someone] who should get the help of Dr. Kevorkian.
Quill: Well this goes to show their naivete about clinical medicine, about
the deeper levels of human suffering, about what goes into pain and what ways
we might be able to explore that pain and intervene in a way that might be
helpful, or to help people live with pain [like] many people do, on a very
regular basis...there is a lot of expertise out there in these areas. It's
not easy work, it's among the hardest work in medicine. But they sure don't
have the expertise to address this. And this would be an example of giving in
much too easily, of the real dangers of a secretive process, because if they got
any experts involved in this case, I would venture to say, none of them would
say this is okay. That this was the time that we had ruled out every reasonable
possibility of helping.
Q: But there was the Mayo Clinic, Cleveland Clinic, Univeristy of Indiana, University of
Michigan...Mayo Clinic again, famous gynecologist, laser surgeries...Dr.
Kevorkian says, 'I've seen it all told her to go to all these doctors....look,
she's at the end of the road, all I am is a vehicle here.' What's so wrong with
that?
Quill: Here again, how do you uncover the fact that this kind of a problem
is there, this is a characteristic history of somatization disorder, so that's
how you make the diagnosis, much doctoring and little curing. Things that
don't respond to usual medical treatments -- many drug allergies, and trials of
drugs that don't work. So this is a complex, common problem, for which and
sometimes the desire to die rather than continue living is a symptom of it. So
this again would be a very troubling situation. But not one that assisted dying
should be.... and certainly not assisted dying by Dr. Kevorkian who has no
expertise in the treatment of these kinds of problems.
Q: Should we be concerned about the number of Kevorkian's cases--27
cases?
Quill: Yes. You gotta believe that number twenty-seven was easier
than number one. This, in my view, should never be the job of a specialist in
this area, because it could get to be too easy. And this should not be easy.
This should be agonizing. And therefore, there may be consultants that help in
this process on a repeated basis because of their expertise in palliative care.
But it seems to me the job of making the final decision should reside on the
person who's going to treat this patient no matter what decision they make.
Again, a lot of people want the possibility but choose to keep living and
we want to be sure they have that option, in fact that's the desired option --
the possibility, but choose to keep living. And therefore we need to keep this
in the hands of the patient and their personal physician. The person who's
committed to working through this process, no matter where it goes.
Q: Hugh Gale's case?
Quill: We're really taught to fix things. You know, come up with
suggestions for people and what's needed in this circumstance is to listen to
Hugh Gale and to tell him what's the worst part and try to explore with him,
you know, the suggestion that he's going to go out to dinner, or why don't you
take up a hobby -- it's almost ludicrous -- you almost say, what planet are you
on suggesting that kind of stuff -- listen to what's happening to me. And you
want that discussion of exploration to occur before these rote suggestions
about what to do. That's a process that we need to encourage much more.
Q: How much of this is a class issue?
Quill: Probably the awareness and the need for reassurance may have some
class differences, if you are wondering whether you can get any health care at
all -- this is probably unlikely to be a big issue you for that. But on that --
the BUT is that some folks that don't have any health care have also seen very
hard deaths and those people really are aware of this issue and are when they
get into health care are actually interested in some reassurance.
So I don't think we should draw any overly simplistic notions that this is
something just for the middle class and upper class who have access to health
care who are into control and all this other stuff. I just don't buy that.
This is a fairly broad support within the public across groups and it doesn't
fall out, liberal conservative, Republican, Democrat, religious, non-religious.
[I]t falls out, I believe based on what you believe yourself.
Now, for people who don't have healthcare, again, their concerns are much
different and for those people, the first job is to get them good health care
and if they're dying, it's to get them good palliative care to ensure that
they're in a system that provides those supports before any kind of discussion
about this particular issue would occur.
Q: I had a feeling....in terms of class....these people are not as
comfortable asking--'Dr. Quill could you slip me something...'
Quill: It is. One case comes to my mind of a man who I worked with maybe
ten years ago. He had a brain tumor and he was dying a very bad death and he
clearly wanted to die. Made it very clearly known, but he never asked me for
any assistance in that process, because he would never want to put me at any
risk. Now, in a more open system, I am certain this man would have asked me.
The way we worked in the absence of that was to try to work as creatively as we
could.. within the double effect, was there anything we could have stopped that
might be prolonging his life. So we worked it through the indirect methods to
try to help him and eventually we were able to do that, but in a more open
system, he would have asked me. You know, when we finally came up with a way
that we could help him openly -- we said, don't you want to think it over for a
few days. He said, 'No, I've been thinking about this for a couple of months,
do it now, not tomorrow, not next week, this is hell the way I'm living right
now.'
Q: Tom Hyde's dying...hard call, easy call?
Quill: They're all hard calls. I think there was little doubt that Tom
was a competent person though, from watching the tape. At least as far as you
could tell in that short period of time, certainly gave the feel of a competent
person; would like to talk to more to be reassured about that....saw what his
future was going to be like and was clear that further losses would be too much
for him. But he wasn't imminently dying...If he had been on life support,
he would have qualified for stopping them without a doubt. And if people were
reluctant about that they would have been criticized for being too reluctant
because people have a right to stop. But it's a hard call because he wasn't
right at death's door. The further out from death's door you move, the more
the need for safeguards and thoughtfulness, but I think he's not as hard as
some of the others we're talking about.
Q: Kevorkian was acquitted in the Hyde case -- what does that tell us
about how people feel about the issue?
Quill: It says, they're never going to convict somebody that does this
with compassionate motives. I don't believe. Even some of these edgy cases
that Kevorkian is now involved in, I just don't think they're going to do that.
I mean you have these very compelling videotapes of people talking about their
suffering, you have families that are confirming that and you're having
somebody saying I did this because this person had no other choice. I don't
think you're going to convict somebody for that. That's not what those laws
were intended for. They were intended for criminal encouragement of suicide.
You know, I'm encouraging you to do this so I get your in heritance or
something like that -- these laws were not intended to cover the high-tech life
that we now have, where we have the ability to prolong life for a very, very
long time. So the probability of having these sometimes daunting questions is
quite a bit higher than it used to be?
Q: Dr. Kevorkian--what role has he played in this process?
Quill: He has been a lightning rod for the issue. He has tapped public
opinion, the public's imagination in some ways. When he talks about -- 'if
doctors aren't going to respond to severe suffering, I will'-- I think that
taps a chord that is very deep in the American public. It really does. But he
also speaks to our public's desire for a quick fix, an easy solution, sort of
the anti-authority mentality and this is not something that quick fix mentality
is very good for in fact it's very dangerous -- very complicated issues -- Get
at the core of some of our real healthcare problems in America. Could be used
for very humane purposes, but could also be abused. So this is something that
really requires some real thought -- not grandstanding now -- but real thought
and exploration of the implications of what we're doing.
Q: What about placing Kevorkian in context.... he comes on the
scene.....he may have caught a wave -- or did he cause the wave ?
Quill: I think Hemlock was on the scene before Kevorkian. In fact Hemlock
was tapping into this process-- actually had a very large membership, a
community of people helping people to die and they were pushing for a long time
these kinds of issues....Derek Humphrey was a real advocate. So it had been
tapped.
[Kevorkian] really took it to another level, because he was getting in the
news all the time, and he was pushing in a very extreme way. And then there
were the referendums in the northwest which did tremendous amount of good in
terms of getting the public to come to grips with the issue and those
discussions in that part of the country really got to be quite
sophisticated...When people got to the voting booth it got right around 50/50
all the time because people got a little wary when you talk about legalizing
this. And they should, it's not a clear-cut thing. There are some questions
whether this can be regulated and controlled. But through some hard work
Oregon passed legislation, huge step forward, which is still in the
courts.
What's happened in Oregon, it's very interesting. Have people started
suddenly clamoring for assisted dying? No. What's happened, so far at least,
is all of a sudden hospitals are finding money for palliative care
specialists....managed care organizations who are saying we have good
palliative care in our managed care -- because they want to be sure that if
people are going to have this possibility, they don't have it instead of good
palliative care. So all of a sudden there's tremendous movement taking more
seriously the care of dying patients. Which is wonderfully positive.
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