Examination of Witnesses (Questions 2115
- 2119)
THURSDAY 20 JANUARY 2005
PROFESSOR KATHLEEN
FOLEY and PROFESSOR
TIMOTHY QUILL
Q2115 Chairman: We want to thank
you both for joining us, one from New York and the other from
New Orleans. The system is that what you say is taken down by
a shorthandwriter and the transcript will be available for you
to check to ensure that what is narrated is what you thought you
said. The draft will then be put on our report as part of their
report which will become public when our report is published,
so your evidence as corrected will be part of that report and
become public property at that time. I think it would be useful
if each of you were to give a short introduction on the subject
matter of our Bill, and then I will invite my colleagues here
to ask you questions on matters on which they think you could
be of further help. Let us begin with New York.
Professor Foley: Thank you for the opportunity
to meet with you. In this brief five minutes I will introduce
myself, and then speak about my concerns about the Bill. I am
Kathy Foley; I am an attending neurologist at Memorial Sloan-Kettering
Cancer Centre. This is a 380-bed cancer research centre in New
York City. I have worked here for about the last 30 years and
have developed an internationally recognised clinical and research
programme in cancer pain. I have also chaired three WHO expert
panels which have published the really leading monographs on pain
and palliative care in cancer patients, in children, and focusing
on cancer pain, again with many of my British colleagues who have
helped foster that work. I have been a director for the last nine
years of the US project to approve the care of the dying, sponsored
by the Open Society Institute. That project has ended and I am
currently the director of an international effort to improve end
of life care, and I am the current president of the International
Association for Hospice and Palliative Care. As I want to focus
on the Bill, I think I am particularly respectful of the work
of the Committee and their commitment to try to improve the care
of the dying. However, my sense is that this Bill does not really
address the major problems of the dying in Britain nor in the
world. The WHO in developing its initiatives in palliative care
has asked governments not to consider such legislation for physician
assisted suicide and euthanasia until the needs of their citizens
had been met with pain and palliative care services, and clearly
Britain is a leader in advocacy for hospice and palliative care
yet the full penetration of services in your own country is not
available, as in mine, and especially is not available for those
of our ageing population with non cancer diagnoses. Not all of
your citizens have access to palliative care units, as occurs
in my own country, or to full home care and hospice services,
but more importantly these programmes as funded by your country
and your government, particularly your hospice programmes, require
anywhere from 30-50 per cent of philanthropic support to survive,
so the government is only paying half in some areas and perhaps
higher in others, but with limited resources and a lack of 100
per cent funding my concern is such services are at enormous risk,
are not fully penetrated, and even not met as my own country has
not met the criteria of the WHO that such services are available
to 100 per cent of people 100 per cent of the time. I think more
importantly it will be a very strong statement that Britain makes
to the world that its way to focus on caring for the sufferer
is to kill the sufferer, and legalising physician assisted suicide
and euthanasia does that. It would make the physician the agent
of death, it medicalises killing really at a time when our resources
for care are limited, when physicians in their daily practice
are under enormous pressures in your country and in my own, and
perhaps it will take 10, 20, or 30 years for all of these issues
to be resolved and for care to be provided to all, and perhaps
at that point in time this legalisation might be reconsidered,
but at this point in time it is I do not think economically feasible
or socially or politically appropriate to do so for the implications
and damage that it might do, both to the profession of medicine,
to the trust of a patient-physician relationship and, most importantly,
to the care of the dying. I have some specific issues about the
Bill and will try to rapidly address those but I am happy if you
wish to cut me off in what I am saying. The Bill is named in a
way to really deceive the public. As you know, advocacy groups
in my own country as well as yours have done focus groups and
public relations campaigns and learned that assisted dying is
a much more acceptable way to talk about physician assisted suicide
and euthanasia. I think the Bill should be more transparent for
the public so that the public understands that it is about physicians
assisting patients in their death by allowing the patient to commit
suicide or actually killing the patient, and although this language
is charged I think is important for the public to participate
in that kind of an open discussion and to hear it in that way.
As the Bill is written it is rather subtle, a little bit hidden,
and I do not think it is as transparent as other British Bills
typically are, so I would appreciate to see that the Bill's name
be changed and there be more openness about the issues. The Bill
outlines medical therapy for the dying but does not give any definitions
of either terminal illness or of suffering. Like The Netherlands,
but in contrast to Oregon, the Bill states that patients have
to have unbearable suffering to enjoy this medical treatment,
but what is seen as unbearable to one clinician and one patient
is seen as highly treatable to another and clearly my 30 years'
experience in this centre has taught me that patients who were
thought to be untreatable, whose pain was uncontrollable and unbearable,
are readily controlled with super expertise provided to them,
and like your country and like mine such expertise is not widely
available to everyone in our society. The patient is to be informed
of alternatives but that is not enough. They really I think, if
you are to move forward with this Bill, really have to have a
trial of those alternatives. Both studies now from The Netherlands
and some studies about patients in Oregon suggested that in both
countries up to 46-50 per cent of patients have not received palliative
care services that they might benefit from, and when offered to
them choose that rather than physician assisted suicide in Oregon
or even physician assisted suicide or euthanasia in The Netherlands.
They also need rather sophisticated psycho social support. I guess
the question will be asked will the patient who requests assisted
dying, if they say "Will you replace my hip", be able
to jump the queue in your country for hip replacement or for a
ventricular defibrillator because they said that otherwise they
want physician assisted dying? These are issues that have to be
addressed. Will the ALS patient in your country receive C-path
or have home perenteral feedings as another choice in their unbearable
suffering of living in a nursing home where they wish not to be?
Will they receive 24 or even 12-hour nursing home, or will they
receive the support and care of their children? Will the disabled
be dealt with differently under these regulations? We know several
things from The Netherlands—that the practice cannot be
regulated; that there is significant under reporting from The
Netherlands in a country where tolerance and openness has been
fostered, so that one is creating a law and regulating something
that appears to be unregulatable in the country where we have
the greatest experience. We know little about Oregon because of
the secrecy surrounding the Bill, and we also know little about
those individuals both in The Netherlands or in Oregon that have
requested physician assisted suicide but have been rejected by
the health care establishment, and we know little about the care
that they are receiving, so that we are at a loss to help predict
what would happen and what safeguards should be in place for those
whose requests are rejected and how we might provide appropriate
care, and this moves me to the broader construct which is the
important issue is how we care for the huge large majority of
people, the 99 per cent of people who need good care, and to what
extent have we met their needs and met the WHO recommendations?
Lastly, I think the point that I would like to make in summing
up is that there is, as I said, new data coming forth from The
Netherlands and some from Oregon that suggest two things: that
the physician-patient relationship does not exist; that patients
aided in death know their doctors less than three weeks in Oregon,
and the prescriptions are written by those physicians. In The
Netherlands it is common for physicians to reject the request
for patients, and yet we know little about the care. In a very
interesting study published by Doctors Pearlman and Back they
interviewed family members of individuals who were aided in death
through an underground network in Oregon in Washington, so they
were not within the legal system within the US, and what was apparent
about those patients is that for 15 years, for 14 years, for 12
years, these patients had always said that they would commit suicide
if they developed a serious illness, and this was a very fixed
belief on their parts, and I think understanding that and knowing
that suggests that there is a population of individuals who are
not necessarily suffering unbearably, not necessarily being undermanaged
or undertreated, who choose this approach, and so I think the
question that we need to ask and that you need to ask is are we
then attempting to cater to a very small population of patients
who want control over the end of their life and want physicians
to provide that control, and that this Bill is not about compassionate
care to a population of individuals but about facilitating the
needs of a group of people who would wish this, and I think that
is a very important issue that now, again, data from The Netherlands
and data from Oregon is helping us begin to assess. In closing,
then, I think Britain has been the leader in advancing palliative
care; it has a long way to go like the rest of the world; for
those of us who work in resource poor countries where you have
been the leader I daily see patients who have no access to morphine,
no access to antiretrovirals, inappropriate care, and the message
they will receive from you will be that "We do not have treatments
for suffering except to kill the sufferer", and I think that
for a society at this point in time would be a serious implication
for the professionalism of medicine and for the care of the most
vulnerable in our society of the dying.
Q2116 Chairman: Thank you very much.
Now I think we will ask Professor Quill if he would be kind enough
to give us his introduction.
Professor Quill: Thank you, and thank you for
giving me the privilege of speaking with you here today to give
you another perspective on this subject. My perspective comes
from my work as a primary care physician for 25 years. I am also
a professor of medicine, psychiatry and medical humanities at
the University of Rochester in Rochester New York where I direct
our palliative care programs, and I was also a hospice medical
director here in the US for 10 years. I am in New Orleans right
now because of the national hospice and palliative care meetings
here. I have written about the doctor/patient relationship, about
doctor/patient communication, medical decision-making and end
of life decision-making; those have been my areas of study during
my career. Like Dr. Foley, I too advocate improving palliative
and hospice care everywhere I go, and agree with her that services
can be improved. We do not have perfect systems of end of life
care or palliative care here in the United States or in the United
Kingdom, as we do not have a perfect system in many other aspects
of medical care in both of our countries. I also advocate for
better last resort choices for terminally ill patients whose suffering
becomes intolerable to them despite excellent palliative care.
Most such patients have undertaken long battles against their
underlying diseases, and most accept hospice reluctantly only
when that battle has been lost. Although palliative care should
be part of the treatment plan for all such patients while they
are receiving active, disease-directed treatment, palliative care
becomes the predominant focus toward the end of life. Both of
our countries have excellent systems of care to address the needs
of those who accept that they are dying, and these systems can
generally relieve most, but not all suffering. It is for the latter
patients, whose suffering becomes intolerable despite our best
efforts to provide relief, that the question of a physician-assisted
dying emerges. I found myself in the center of this debate when
I published a narrative in the New England Journal of Medicine
in 1991 describing my providing this possibility to a patient
named Diane. Diane had acute leukaemia, and initially turned down
aggressive treatment that had a small chance of cure. She wanted
to make the most of her remaining time to be with her family and
to complete some "unfinished business." She hoped to
live as long as possible, provided her life was meaningful to
her and she could interact comfortably with those around her,
but when and if her quality of life was irreparably lost, she
wanted to die quickly and painlessly. What is not well understood
about her story was that Diane then spent over 3 months on a home
hospice program. During that time, she took several life-prolonging
treatments such as transfusions and antibiotics. Because I was
willing to give her access to medication that could end her life,
she was able to live that time without fear that she would have
to suffer in a condition that would be unacceptable to her. She
only took her life at the very end of this process when she had
an uncontrollable infection and accelerating symptoms and her
life would have been measured in hours to days which would have
been, to her, unacceptable. I have subsequently met many people
who were like Diane for whom this is a very fundamental issue,
and it is for these people that this question about legal access
to a physician-assisted death comes up. These are people who want
a loud voice in how they die. They are often people who have been
through long struggles in the medical system, trying to live longer
and those struggles have ended. Now, excellent hospice care in
this country is the standard of care for people who are dying
and palliative care should be part of the care plan for everybody
with a severe illness. Assisted death should only be thought about
for those infrequent cases when suffering becomes unacceptable
despite our best efforts. If such a person is on a life support
we give a very different message as palliative care physicians.
The message we give when a person on life support says they want
to stop is "listen to the patient, they generally know what
they are talking about", it is very critical to listen to
them at this juncture. If someone does not have a life support
to stop and their suffering is the same or much more severe, the
message we give is very different—there "must be something
wrong with the patient; all they really need is more palliative
care." In fact what we should do in both circumstances is
listen attentively to the patient, carefully evaluate them for
depression, and make sure their access to palliative care is sufficient.
If they have looked at every alternative and are still suffering
intolerably, then we try to find the best way to respond to them.
If we are considering stopping life sustaining therapy, you will
see if you look into a medical record that we get our best minds
together. We document very carefully what we are doing, and we
are very cautious about doing this even though it is medically
permissible because it is subject to all the same risks that physician
assisted suicide would be. If the patient receives a physician
assisted suicide chances are there are no second opinions; the
process goes underground. Because of this secrecy, physician-assisted
suicide can be much more idiosyncratic than the process of stopping
life supports; so one of the key questions in this process is
do we better protect and respond to patients with a secret system
like in the United States outside of Oregon, or with an open process?
We now have empirical data from Oregon about what an open process
might look like; and we have learned that physician assisted suicide
accounts for one in 1,000 deaths; it is not a frequent occurrence.
But one in 50 people who are dying talk to their doctors about
physician assisted suicide, so the process of discussion is much
more open. One in six talk to their families about this, so this
taboo topic that was occurring underground is much more out in
the open. We also know that 85 per cent of people who have died
from physician assisted suicide in Oregon are participants in
home hospice programs. Also, in Oregon, compared to the rest of
the nation, palliative care has really improved. There are more
deaths at home than in other parts of the country; morphine prescriptions
per capita are among the highest in the country; physicians attend
pain and medical communications workshops more than in the rest
of the country, and that the study of this process when you open
it up becomes much more intensive. Most of my work is done doing
standard palliative care consultations right now. I help patients
and families achieve excellent pain and symptom management and
try to understand their goals in light of their medical condition.
Our palliative care teams provide support and try to help patients
and families make the most out of the time they have. It is inspiring
work, and it is something that I genuinely love to do. I have
also become a safe person for people to talk to who are considering
these last resort options because I have been willing to talk
openly about the practice of physician assisted suicide and other
last resort options, so I see cancer patients and ALS patients
who are wondering about these options. Most want ideas and support
as they are considering what their choices might be at the end
of their life; they do not have the kind of choices they would
like—they would all choose to get better if that was within
their grasp. All would like to live as long as possible as long
as their life has meaning, but many of these patients also want
information about what choices they could have. Armed with this
information most people choose to keep living and they live in
a way that feels less trapped to them, so the possibility of an
escape is extraordinarily important to many people. A few will
end up wanting some kind of assistance in dying and, again, this
is where we need to have a much more open process, a predictable
process, a process where we can get our best minds together to
try to find a way to respond to these patients. Such open response
is a core part of what we ought to be offering in palliative care;
because it is infrequent does not mean it is unimportant. Thank
you.
Chairman: Now it is open to members of
the Committee to ask questions of one or other of these contributors
from the other side of the Atlantic.
Baroness Finlay of Llandaff: Thank you both
for being with us today by link. I have a question for Kathy Foley.
Could explain the difference between a patient who decides to
stop their treatment in the example that we have just been given
and a patient who asks for physician assisted suicide or euthanasia,
and the difference for the caring team but also where there are
differences for the patient themselves in that? Although the outcome
for both is that there will be death, I wonder if you could explain
if you see there being differences in the route to that death.
Professor Foley: I think that is an important
question because probably Dr Quill and I disagree on this construct
of making distinctions between withholding and withdrawing care,
and assisting patients in death. As you well know probably, our
Supreme Court made the distinctions between withholding and withdrawing
care, and physician assisted suicide and euthanasia from a legal
perspective and withdrawing care, if we use the example of life
support that Dr Quill gave, is an example where really what patients
are exercising is their right not to have their bodies invaded
by a respiratory support, by a bronchial tube, by a variety of
devices that are viewed as external to them invading their body,
and that they have control and permission to give up and not to
use that type of support. Again, the attempt to conflate withholding
and withdrawing life support to physician assisted suicide has
been a very strong movement, making them appear that they are
the same as opposed to being different. So let me give you some
aspects of how they may be different. If we talk about withdrawing
a patient from life support, in this country life support typically
occurs in patients who are institutionalised. We have very few
patients at home on life support, so therefore life support occurs
in a very regulated transparent environment where, when patients
wish to have their life support removed, they typically will request
it of their physician, they often will request and have discussions
by an ethics committee, the hospital administration may be involved
in it as well, a lawyer may well be involved in it—there
are a variety of aspects that make it quite open, quite transparent,
and therefore highly and fully regulated. Those patients commonly
in hospitals are assessed by a psychiatrist, so that the common
approach is that the patient is asked, a psychiatrist is asked
to comment on the patient, and a variety of open transparency
occurs. In physician assisted suicide, if we use the US example,
it occurs in the secrecy of the home with no psychiatric consultation
and with no discussion but with, more importantly, the recognition
that we are not asked to provide treatments to patients in that
setting and no patient is invaded except by a disease over which
the physician and the health care establishment has little or
no control except to help improve it for the patient. So the settings
in which this occurs, the transparency and the ability to regulate,
are really quite different and there is a belief, both ethically
and philosophically, that these are different but there is a movement
to try to conflate all of these. The use of high doses of opioids,
withholding and withdrawing all end of life procedures all have
the same aspects, yet our philosophers and ethicists see them
as distinct and our legal system has seen them as very clearly
distinct. Our constitution has given people a constitutional right
for withholding and withdrawing of care and yet there is no such
thing as a constitutional right to physician assisted suicide
and euthanasia.
Professor Quill: Can I comment on that? I do
not disagree that there may be ethical, legal, and perhaps moral
differences between them—I do not disagree with that. I
also try to look at these acts from the point of view of the patient
who is faced with being ready to die, and we clinicians are often
racking our brains for something that can be stopped to help them
die so that we are within what is legally acceptable to do. Many
patients do not see any significant differences between dying
from voluntarily stopping a life-sustaining therapy and dying
from taking an overdose of legally prescribed medication. In my
opinion, the patient's and their family's views and values in
the circumstance are often the most important as we think about
these acts and are trying to respond to a particular patient,
so we are very often trying to find a way to respond and if we
can find a life support to be stopped then we would stop that
life support. In my view, all of these "last resort' acts
that result in a patient's death should be subject to very similar
kinds of regulation: in fact there is very little formal regulation
about what is required to stop a life support, so even in the
absence of regulation there is good documentation. Many of these
cases are, however, at home as well. Feeding tubes can be stopped
as a life-prolonging therapy; some patients on ventilators are
at home, but still you see very good documentation about what
is going on because it is an open process. If you did any of these
acts without a patient's will then you would be into a very troubling
moral conundrum, so they all depend very heavily on trying to
act according to the patient's will and wishes.
Q2117 Lord Turnberg: It has been
very helpful listening to your experience. We have been teasing
away at some of the issues and one of them has been defining "terminal
illness". We have been talking about terminal illness being
within six months of a person dying, as far as one can tell. I
wonder if you have any comments on this?
Professor Foley: I would be glad to start. There
are probably two references that might add to your confusion about
this issue, that is work by Joanne Lynn and the data from the
support study and what Dr Lynn showed in a group of seriously
ill patients, over 10,000, admitted to five leading centres in
the country who were studied with interventions that were focussed
on improving their end of life care, was that on any one day those
very seriously patients had a 50 per cent chance of living for
a year or longer. Nicholas Christakis has written a very lengthy
text as part of a PhD thesis on prognosticating and has again
attempted to come to some definition of how one would identify
a terminal illness. As you know our Medicare healthcare policy
requires that patients be given a diagnosis prognosis of less
than six months, yet we see many patients living quite beyond
that and see the deficits in the prognosis. What Dr Christakis
has identified is that for the most part physicians are poor at
prognosticating about their patients and, again, can be wrong
as often as 50 per cent of the time using a six month criteria.
Dr Lynn has suggested that if one uses a criteria of one year
you might be a little bit better and increase the statistical
validity of using one year, but again it is not this reliable
and she has argued that really the way that we should decide how
we provide care financially, economically and otherwise, to people
at the end of life, should be on their functional status and their
burden of disease and not based on the idea of a terminal illness.
There are others much more famous than I who have said that life
is a terminal illness, so we could argue that this could be available
to people from the moment of birth.
Professor Quill: The definition of terminal
illness is something we are used to doing. To go on to a hospice
programme in this country you have to have a prognosis of six
months or less. We had a fairly stringent criteria in the past
of six month prognosis and what ended up happening is people generally
lived a very short period of time because we had to be so sure
they were likely to die in six months, and if you were not that
sure, if your programme was a little more liberal but it was just
likely they would die in six months then your programme might
be cited so we really for a while moved that prognosis very short.
The six month prognosis has now been liberalised for hospice purposes
so you have about 80 per cent chance of dying in the next six
months and length of stay has gotten a little bit longer. We clinicians
are used to prognosticating all the time, and in doing so we are
making statistical statements of probability. The patient is likely
to die in six months. When a person goes to an acute hospice unit,
we prognosticate that they are very likely to die within the next
two weeks. There are some times when we can be quite sure of that;
there are other times where it is less certain. Heart failure
is a good example of where there is a lot of uncertainty about
how quickly a person would die, but some of that uncertainty depends
on continuing very aggressive treatment. If we continue all of
those treatments that a person is on, then it is very uncertain
how long they will live. If we are going to stop all those treatments,
they are highly likely to die in the near future. The reason why
we continue these medications even when a patient is prepared
to die is that the symptoms when you stop the treatments can end
up being very difficult to deal with. One of the other things
we have learned about physicians prognosticating is that, in fact,
they tend to be overly optimistic rather than pessimistic, so
when a doctor says the patient might live a month the average
patient is probably going to live much shorter than that. Physicians
tend to be overly optimistic when they prognosticate.
Q2118 Chairman: I think we were told
that in the hospice conditions you are required to opt for having
comfort care only, is that right?
Professor Quill: That is correct, but take as
an example a heart failure patient. Treating their heart failure
is a comfort measure—in other words, treating their disease
keeps them comfortable, so it does not mean they are stopping
all their heart failure treatments. Those are generally only stopped
when they are imminently dying and we use other measures to manage
their final symptoms, so even in hospice care we try to keep people
alive and going as long as possible as long as their life is meaningful
to them. Many disease treatment measures are comfort measures
as well.
Professor Foley: I would like to respond to
that, if I may, because I do not fully agree with Dr Quill. The
way that legislation is written is that patients do have to give
up concurrent care, that is aggressive chemotherapy; they are
not candidates for phase two or phase three clinical trials; that
is not covered in the Medicare benefit at the present time; and
patients who have significant cardiac failure could not then become
candidates for heart transplants or ventricular defibrillators
and receive concurrent hospice care. The financing of Medicare
is established in that way. There are hospice programmes around
the country who because of their philanthropic support and added
monies provide some of those services to patients that are not
necessarily provided, so in contrast to the American hospice system
as compared to the British we are not fully integrated, as you
are; concurrent care is not possible; and patients do have to
make this choice of giving up aggressive cancer therapies for
hospice care. This is a policy issue that is under great debate
and of great concern but it is quite different from your system
where concurrent care is available.
Q2119 Lord McColl of Dulwich: I am
a practising surgeon and I would like to ask two questions. What
is the evidence that, outside Oregon, physician assisted suicide
is happening underground? Secondly, is the specialty of palliative
medicine recognised as a distinct specialty in the United States,
Holland, Belgium or Switzerland, as it is in the United Kingdom?
Professor Quill: Let me go first on this question.
In terms of the secret practice in the United States, Diane Meier,
myself and several others have done a nationwide study on this
subject and found that the secret practice seems to be about the
same rate as in Oregon, somewhere in the two-three per cent range,
as best you can tell.(Meier et. Al. A national survey of physician
assisted suicide and euthanasia in the United States. New England
Journal of Medicine;338:1193-1201) The techniques you have
to use to study these secret practices are very challenging; we
spoke with researchers who conduct nationwide studies on child
abuse and other illegal activities to try to get a sense of how
we can protect the respondents and still get true data about this,
so it is not the strongest data in the world. The Oregon data
are much more reliable because of people openly responding for
themselves about a legally accepted practice. Palliative medicine
in the United States is a growing medical field that is on the
verge of being a formally recognised specialty; there is a certification
process here in the States that a growing number of people are
obtaining. We still have many more job openings for palliative
car clinicians and researchers than there are people to fill them,
but I think it is a specialty that is growing here in the States.
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