Q: You have said that this issue of assisted suicide is virtually an overnight sea change; unparalleled in
your experience.
Quill: It's certainly astounding in the rapidity...and how profound the
changes. Again, the secret practice and the situation where people felt forced
to walk away from this problem. It really does change the playing field.
But what's scary about it is--we really don't know how to do this out in
the open. There is no experience in our culture for how to do this. There is
no infrastructure for regulating and setting policy...so as we go through the
next phase of appeals I think our challenge is to try and put those kinds of
processes in place. Both processes that promote good palliative care for
everybody who's dying, but also processes for what do you do when that good
palliative care stops working...what kind of processes should people go
through? Again you want to make that not too easy, but not too hard. It has
to be responsive, but safe.
Q: There is a spectrum, where are you on the spectrum?
Quill: I really feel like I'm in the middle of the road. I see the
dangers, I also see the potential. I see that this is going on all the time in
secret and I know that a secret process is worse than a more open process.
It's bad for doctors, it's unpredictable for patients. And it also is
potentially dangerous for patients. So I believe that a more open process that
really promotes good palliative care for everybody who's dying, but also allows
this as a last resort is good, for everybody. Whether we can end up there is
not clear, but that [is] certainly what I would be promoting.
This is not a simple rights issue in my mind. The right to die-- I don't
know what that means exactly-- as if it were a choice, dying were a choice,
people could choose it whenever they want it...if we end up there I think
that's a real problem. These are complicated decisions, people have wishes to
die who are seriously ill on a fairly regular basis, we need to be able to
distinguish between those transient feelings of discouragement and, a real
genuine persisting wish to die for somebody who has no other choices. That's
the group this should be an option for and the others need good care and that's what we have to work to deliver to them.
Q: Virtually every doctor says-- 'This is not what I do. This is not
what I became a doctor for. This is not what ought to happen....it's started by
the wrong guy at the wrong time at the wrong place. It literally must be
stopped and we must stand up and talk about this as often as
possible'......
Quill: Well, dying in the back of a van, with someone you don't know very
well, is a horrible process. That's a symptom of desperation. I think you
have to ask more mainstream doctors You know, people who are selected to
testify, are selected because they present a certain kind of postiion. When
you look at unbiased surveys of unbiased physicians....it turns out the
majority consistently say that doctors should have more leeway in this area.
Now, not all of those would be willing to act on that themselves -- it goes
down to about 30 or 40 percent, but the majority think that we should have
more leeway than we currently have. So I think I speak for those doctors who
are in the 60 [percentile].
One of the interesting things that happen when you get to position
statements by the AMA or by Hospice...is that they take often very rich array
of opinions, reflecting the issue itself, and they somehow transform that into
a black and white one-dimenisonal decision. There are other groups...their
position statements say we vehemently disagree about this. This is a complex
issue.
Q: Who in the end will decide it? Who will write the rules, who will
police the rules?
Quill: If it's going to be legal, if the courts are going to say, 'This is
going to be legal' there will be a statewide task force that will then look at
this issue from a regulatory point of view and say, 'How can we build in
meaningful safeguards that will promote palliative care but also allow this as
a last resort?'
The mandates from the court decision say that the legislation can put
restrictions on this, but that they can't be so restrictive that it's
unavailable to people that really need it, so they've really challenged us to
come up with that kind of regulation. And I think there's some model
legislation out there from a group up in Boston and a number of groups have put
out some safeguards and proposals for regulation, so my hope is that those will
gradually get codified and worked into a system that will be responsive.
Q: What's your worry about this?
Quill: A couple of worries....One is that we end up with a real polarized
process in the country around this issue, which I think would be a big mistake.
You know, if we end up in a totally pro-choice position, you know, that's
dangerous -- you know that would be on-demand, kind of assisted dying and that
would be a big problem.
On the other hand if we have an anti-choice position, however you want to
put it, you then drive the process back underground and that's also bad, so we
need a middle-ground position. And we need to not have people fighting and
overstating their position but getting together around good care of the dying.
Q: Why are they fighting and overstating their positions?
Quill: It's a very complex issue. It gets at the core of what medicine
is. Are we about, in medicine, helping people to die better? I think the
answer to that is yes, we are about that. That's a change in the way it's been
looked at at least in the last 25 years. When I trained, we were really
trained to fight for life at all costs and the stuff where we weren't doing
that was not talked about a great deal, done very secretly. And what that led
to is the kind of data that you still see from the support-study...but it
showed that people are still dying in intensive care units tethered to
machines, often unconscious for the last periods of their lives, I mean just
stuff that gives you the willies and so the doctors are still having trouble
letting go of that fight, so we need a more balanced approach and to do that
requires some jostling a little bit, some challenging of the way we think about
what we do.
Q: The verdict on Dr. Kevorkian.
Quill: ....I don't know. I have very, very mixed feelings. I really think
he needs to stop doing what he's doing. I think whatever good he's done in
terms of raising public awareness of this issue is done. I think what he can
do now is simply add to the polarization, he's going to be an example of the
worst case scenario of a maverick doctor acting on his own. And I think that
needs to stop. To be fair to him, you're going to have to say he has really
raised consciousness of the issue. He has at least got suffering to some
degree more on [the] table than it was before, maybe a simplistic view of it -- and
it's not simple -- but he's got it on the table where it needs to be.
Q: So is he relevant at all to where it's going?
Quill: I don't think he's relevant now to where it's going -- no, no.
Except to say, his actions are the reasons why we need safeguards, the reason
why a secret process is not good. Because he would need to get a consultation
and be helped in this process if he were a licensed doctor doing this. And in
getting that help he might learn something about the care of dying people and
learn how to help them to live as well as to potentially die.
Q: The cases of Marjorie Wantz and Sherry Miller.. Their videotape --
what's at work there?
Quill: This is tapping something very deep. It's tapping those bad
deaths that people have seen. All those times that they've been struggling as
a family or as a person alone and feeling that no one is really hearing what's
really happening -- that's what's at work -- fear about that feeling of
abandonment and a desire for some real help in that process and we have to
really provide that kind of help and provide reassurance that we won't be
afraid. The safest course from a legal point of view has always been, if things
get ambiguous step back. Because the courts have no room for ambiguity -- they
only have room for the black and white cases and there is nothing in this
buisiness of caring for dying that is really black and white.
Q: And so what's going on in that courtroom?
Quill: It's a dramatization in some sense, it's so exaggerated...it's
like a made-for-tv-movie or something like that. That gets at a very complex
issue, it plays along, it dallies along the surface of a very complex issue,
you have the lawyer ostensibly arguing in favor of human suffering who has no
concept of real deep human suffering, you have Kevorkian as the hero, the hero
doctor, it's absurd -- it's a B-movie.
Q: But yet, look what it is--it's headlines. It's people
dying....
Quill: Well, you know, just as all B-movies try to tap something that's
deep and important.... It's not tapping it very well, it's not getting people
at the issue, people are very interested in it, it's a tear-jerker in some
sense, but it doesn't get at the complexity of the issue, it doesn't
necessarily force you to self-examine yourself in a deeper way -- that's what
we want to have happen -- we want doctors and policymakers and lawyers to look
inside and really think harder about the issue. This tends to polarize people
because you see part of this is so bizarre, the vans, the machines, that it
brings out not the desire to look inside, but the desire to pass judgement and
people pass judgement according to what they already believed when they were
going into it.
Q: What's missing when you look at a Wantz case, a Miller case? What do
you wish had happened, what do you wish people knew about that?
Quill: I think instead of that we should be seeing people dying in
hospice...not in the romantic way, not with everybody always smiling and
happy...but the real process, the wonderful, hard, challenging, work of dying
together -- connected to other people -- people really trying to make this
process work -- struggling through the uncertainty, keeping people going,
making a small difference here and there, that's what's important and that's
lost here. You don't see a lot of caring going on here, you don't hear about a
lot of caring in these peoples' lives from their doctors, or from the system or
from anything. That's what's missing in these cases and that's why it's so
disturbing. If that was present and then this happened, I think it would be
much less disturbing.
Q: And probably not as good a headline.
Quill: Right. It's hard for us to deal with things that are deep and
complex and this is deep and complex. You can try to oversimplify it, but it
doesn't oversimplify.
Q: Hypothetical. I'm a 50 year old physician...go to [a] doctor and say I
want to die...Doctor gives all the options....if suicide is legalized, they
will have to say as one of the many options, I have to tell you ....something
has now entered the process which is death giving and it's now ordered to be
there
Quill: Well, one of the safeguards is that this would be raised by the
patient and not the doctor. But if it's in the public domain, the patient
might be more likely to raise it if it's on their mind, if they don't raise it,
it was still on their mind, this is not something that's new just because they
are talking about it.
So, to me, talking about things that are like that is always better than
not talking about it. But the safeguards really insure that when that is
raised, you start to go through a set of guidelines or criteria--Have you had
palliative care? Is pain part of this? Can we do more with the pain? Are you
sure you've looked at every other option? Are you terminally ill and if not,
what is your prognosis like? And what is living like and so on and so forth
and lets say that you and I agree after extensive conversation that really,
you have had good care, you've been on [a] hospice program for three months already
and your getting to the end of the road and you meet all the criteria, now I'm
going to have to have you see one of my colleagues who is an expert in
palliative care just to be sure we've turned every stone that is reasonable.
Big important safeguard. Now its not just in our relationship, even though it
needs to come back here. But it involves making sure according to somebody who
has expertise in these areas -- that we've crossed all the t's and dotted all
the i's.
That's got to be safer than where we are now, where you and I would decide
this on our own and act in secret without telling everybody, or not. Where you
have to either keep going against your will or figure out what to do on your
own.
Q: How about pressure on me, as a sick 60 year-old...I feel a pressure
to get out and now I can.......
Quill: You feel that pressure whether you talk to me about it or not, So
again, exploration of that pressure. And maybe then we have a family meeting
to try and talk about that together and see what can be done to let go of some
of that pressure. But again, it's a piece of the puzzle. I don't delegitimat[ize]
those kinds of issues, I think they need to be talked about and explored and
again we try to see if we can get other resources in through hospice or some
other program...those issues are there whether this is possible or not. And
what they now mean is they can be made part of conversation and the
conversation by and large leads to new solutions that are not assisted dying.
But if we came to that conclusion again, we'd have the safeguard of a second
opinion to make sure that we weren't going off on a tangent that wasn't really
indicated.
Q: What about the fears some people have about HMOs just offing people
because they don't want to pay anymore...?
Quill: I think it's not going to happen...These pressures have been there
for dialysis treatment-- that treatment is extraordinarily expensive. We do
allow people to stop dialysis. We carry that out very carefully. We get
second opinions, we do all the kinds of things that I would advocate that we do
in this kind of a circumstance...and only when there is a consensus does a
person go off dialysis. The state would save a lot of money if everybody went
off dialysis, it's extraordinarily expensive, but this is a hard thing to do
and people won't do it that easily.
Now if you look at what HMOs all need to do, they need to develop
palliative care and hospice, because it's less expensive than continuing to
throw acute care at people who are dying. And it works better, it's better
care, it costs less. What more can an HMO ask for? So HMOs all need to be
developing not just hospice care in the restricted sense that medicare has in
the final months, but for all people who want to emphasize the quality of their
life foremost in their care so a much broader benefit, I believe and that is
actually a very exciting possibility with all the fears we have about HMOs.
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