Select Committee on Assisted Dying for the Terminally Ill Bill Minutes of Evidence

Examination of Witnesses (Questions 2115 - 2119)



  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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