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


Examination of Witnesses (Questions 2120 - 2125)

THURSDAY 20 JANUARY 2005

PROFESSOR KATHLEEN FOLEY and PROFESSOR TIMOTHY QUILL

  Q2120  Lord McColl of Dulwich: Would it be possible for you to let us have the published papers showing this evidence, please?

  Professor Quill: Yes. I would be glad to send that to you.

  Professor Foley: There are I think two published papers, one in press and one in review by Doctors Back and Pearlman who interviewed 60 family members of 35 patients who had been aided in death or who had themselves had committed suicide in the setting of a terminal illness, and these are patients who for the most part had had, as I mentioned previously, longstanding beliefs that this is what they would do, and this is an analysis through very detailed family interviews of what made them do this, "What the physician/doctor relationships were" is the name of one paper, "What the timing of death was" is the title of another, and I can provide you with those references, but what they do provide us in contrast to other data that we have is the sense of a group of individuals who do not see that they need doctors for any part of this and really do not wish to involve doctors with this, although they would have benefited by speaking with doctors and who have had long committed views on this sense of control, and I think it is important for us to recognise that and also I totally agree with Dr Quill that physicians should be able to have detailed discussions about the concerns of patients for hastening their death and what the meaning of that is. I will gladly send you a series of papers written by one of our leading palliative care nurses, who did a phenomenal logic inquiry with patients who asked for a hastened death, and to hear the compelling conversations of these patients who felt in such a power relationship with the physician, who felt that they were afraid to say to the physician that they were in pain because it might obscure their further treatments, who felt that hastened death was the only option because of poor communication with their physicians, but most importantly their significant vulnerability. So I think we are beginning to have a much better understanding, and clearly every physician needs to know how to talk with patients about these issues, and how to evaluate patients and to provide them with options and what those options are. There is such a range of options from dignity conserving therapy that Dr Chochinov has advised for such patients and demonstrated improvement, and now the data from The Netherlands and Oregon suggesting that when patients are given such options they choose them for their care; he is beginning to open up in a much broader sense our understanding of how to care for such patients and their requests.

  Professor Quill: Additionally, this is one of the fundamental questions I think you need to think about, and we all do; whether these kinds of conversation that both Dr Foley and I believe should occur are facilitated by an open process or not. Currently if you want a physician assisted suicide outside of Oregon this exact conversation goes underground; it becomes dangerous to get a second opinion because it might undermine an illegal practice, so in fact these are very complex conversations. One of the good things about an open process such as is being considered in the United Kingdom is that the patient is evaluated by his or her own doctor, and also a specialist in their illness and a specialist in palliative care. These are very complicated questions and the vast majority of people raising them simply want to explore them, they want to know there could be options, and they probably will not act on them.

  Professor Foley: But I would argue that an open process does not really add to it because I can tell you that in our hospital-based consultation service this is a very common question for patients who are expressing their desires for a hastened death, their willingness to be open and talk about it. They are enormously relieved, and here in New York State where neither physician assisted suicide or euthanasia is legalised, these are very open discussions with patients who understand this is an illegal practice yet want very much to talk with them, and our psychiatry service here has enormous expertise in looking at these issues of hastened death. Dr Bill Breitbart has published a series of studies from our population and an AIDS population he cared for where this has been very open, so Americans and particularly those in New York have no question they wish to talk about this, want to talk about it, need to talk about it, and there is expertise to provide that conversation, and it does not necessarily mean you have to provide that to the patient and the open discussion does not require an open legalisation policy.

  Q2121  Lord Joffe: I want to ask three brief questions which I will roll together in relation to prognosis. We have had evidence that prognosticating in relation to cancer cases in particular and the end stage of life can be reliably done. Secondly, that it is much easier and much more reliable to prognosticate in relation to the very last months of a terminally ill patient's life and, thirdly, have you statistics on the average length of stay of terminally ill patients in hospices?

  Professor Foley: I can begin with the last question, and this is published data that the National Hospice and Palliative Care Organisation will gladly provide to you, but the average length of the stay of patients in hospices—and it is important to recognise that our hospice programmes are different from yours—eighty per cent of patients in the US who receive hospice care receive that care at home and 80 per cent of the care has to be provided at home, so we do not have in any way the number of freestanding in-patient hospice programmes as do you. The length of stay is 14-16 days, and this has been reduced rather dramatically over the last several years for many different factors. The data for cancer—I do not want to say that it can be reliably done but because we have the best of the survival curves for cancer treatment we can use those to be predictive but we have little to no data on patients with congestive heart failure, on patients with Alzheimers, on patients with chronic neurological degenerative diseases. Those are the areas where we lack the most, and recognise in the US that only 20 per cent of our population receives hospice care so 80 per cent of people die in the US without ever receiving hospice care, yet 60 per cent of cancer patients receive hospice care. Do we know the last months and days of life? We do and we do not and I think this is often the dilemma and, as I will reiterate, this is why we have tried to argue that in social policy and government policy the language of terminal illness is one that is not definable well enough except in a very arbitrary way which one can accept, and why is a patient's life with six months different from a year, and why are we making a decision here of terminal illness and not serious illness?

  Professor Quill: Certainly, if our median length of stay in a hospice is two to three weeks, that suggests we have some accurate, conservative definition in terms of what constitutes terminality. You can make an argument that is way too short for that particular decision and, certainly, I would advocate longer stays for people on hospice programs. Some of the reasons that so few people die in hospices has to do with the reasons which Dr Foley was talking about, that our hospice programs restrict the most aggressive disease directed therapy and do not pay for it. Many times, when we are trying to prognosticate in heart failure or in chronic lung disease, particularly heart failure, the uncertainty comes because we are still continuing a good amount of disease directed therapy. If we stop those therapies people will die much sooner, but the challenge is that they will then die much more symptomatically if we stop those therapies. Again, we tend to only stop them only when patients are literally dying. It does illustrate some of the complexity of prognosticating. With people who are ready to die, they would be ready to stop all of their treatments, but then that might lead to a very symptomatic death and that is the challenge those patients present to us.

  Q2122  Bishop of St Albans: My name is Christopher Herbert, and I am the Bishop of St Albans. I would like to raise a question with Dr Quill. I am assuming if a patient asked you for euthanasia simply because they were tired of life, you would not meet that request, but you would advocate euthanasia, therefore, only for those patients who were suffering unbearably. It follows that if appropriate pain control was available, would you be still advocating euthanasia?

  Professor Quill: I am not an advocate of euthanasia, I am probably much more of an advocate of physician assisted suicide because it has the safeguard built into it of having a patient finally having to act by his or her own hand. That is an important piece of the puzzle. On the other hand, you still have to have a way of responding to people suffering the same or greater who cannot take the medication. Again, in this country, the way we respond to such cases would be with the possibility of terminal sedation or stopping eating and drinking. There are possibilities that patients have which are not euthanasia. With regard to how much and what kind of suffering, I think we have very good answers for almost all pain problems. Pain is very rarely the sole reason a person is asking for an assisted death. The data in Oregon support this very much and all of the other studies I have seen support this also. When a person says to me they are ready to die because they have a lot of pain, I breathe a huge sigh of relief because I have learned from Dr Foley and others about good pain relief measures and if I cannot do it myself I can find other experts who can help. More commonly, people want to die because they are tired of living, they have been going on a long time with their illness, they have many, many symptoms in addition to pain such as: debility; fatigue; anorexia; open wounds; they cannot get up; they cannot sleep, all kinds of symptoms which simply they are exhausted with, and they are frequently symptoms which we have less good answers for than we do for pain. Generally, when a person says they want to die, and they are asking for euthanasia or assisted suicide, this is the beginning of a serious conversation and intense evaluation where we look for and try to understand the nature of their suffering and try to respond in other ways. Only for those cases where we can really understand the suffering, understand why it is unbearable to the particular person and do not have other ways which are acceptable of responding, are we then looking at "last resort" options. I would include in these "last resort" options interventions like terminal sedation, stopping life support, and assisted suicide as the last, last resort.

  Q2123  Earl of Arran: This is a question to both Dr Quill and Dr Foley, and it is a very obvious question. When we were in Oregon, we understood from the Oregon authorities that other neighbouring states had come, seen and had, indeed, flirted with the idea of assisted suicide with a formula for it in Oregon, but they had not been conquered by it, indeed, they have shied away. I would be very interested to know why this is? Do you think that other neighbouring states, after seven years of assisted suicide in Oregon, in the next few years will embrace what Oregon performs?

  Professor Foley: We have written a rather critical argument with Dr Hendon against the Oregon health division and the fact that they have lacked transparency in presenting information. I would gladly provide the series of articles as well as an edited text we discussed. I do not think one can easily speak to the other states except to recognise that after the Oregon passage of the law—Remember it was passed in Oregon with a 51:49 per cent vote through a referendum which is a relatively usual system of creating a bill such as it was, but again, it is unique to Oregon. Oregon was also a state which had developed priorities for healthcare and, in a way, was leading the nation until the government went bankrupt trying to provide a more socialised system of healthcare. It was seen as a model in that perspective. The Oregon governor was an emergency room physician and very much an advocate. Oregon is different from the surrounding states in that since about 1993, well before the passage of the law and consideration of the law, there were discussions about prioritising end of life care. There was a development of a policy on life sustaining therapy which was advocated by Dr Susan Tolle, the group there, early on and way before the legislation. Then the Medicare data suggested that in Oregon only 31 per cent of people die in hospitals; if you go to California, upwards of about 55 per cent die in hospitals; and if you go to the state of Washington about 52 per cent of people die in hospitals. There is something uniquely different about where people die in Oregon along with a history of a small state focusing on socialised medicine. The other states have not embraced it. After the passage of the law in Oregon, states such as Michigan, Maine, California, all turned down votes after significant debate and discussion. In the US 10 states further enforced their laws on physician assisted suicide and euthanasia. In a Supreme Court decision, which Dr Quill was involved in, between the different appellate courts in the West Coast and the East Coast, the Supreme Court decided it was not a constitutional right. These states are quite different, California being a state with a broad immigrant population, a very diffuse population, no priorities set in healthcare for end of life care, inadequate pain and palliative care services and the report card, which has been done recently by the Robert Wood Johnson Foundation, demonstrates that it does not provide particularly overwhelmingly great palliative care to its citizens. They have different states, different populations, different make-up, different use of Medicare and we think these are very, very important differences which do not resonate with states like my own.

  Professor Quill: An additional word about Oregon, Susan Tolle has written a paper about the "silver lining" that comes from the passage of physician-assisted dying legislation and more open discussion around these issues. One of the good things which has come out of this, in addition to more choice, is the concomitant improvements in palliative care and hospice care in the state of Oregon. There is much more open discussion about the real intensive look by ethicists and palliative care physicians about improving the general baseline care which everyone receives there in terms of palliation. I think there is growing public acceptance of the practice by Oregonians if you look at public opinion surveys. Why have other states not taken this on? Right now in our country it is very hard to have discussions which are not dominated by the edges, so we end up with very polarised discussions around potentially contentious issues. It is very hard to find the middle ground. I believe the next state which is likely to have a referendum which has a good chance of passing will be the state of Washington. Washington almost passed a referendum which included both assisted suicide and euthanasia in 1991. There was an unfortunate incident of Dr Kevorkian doing something very provocative right at the eleventh hour during that last referendum process in Washington, and it was narrowly defeated. Most of these referendums come down right about 50:50 plus or minus a few percentage points. Again, this is a challenge on how we establish policy where there are significant differences of opinion amongst the population.

  Professor Foley: I would like to comment on the Susan Tolle article. As much as that article has been described as what is called, the Silver Lining, Dr Tolle published a second paper in 1999, and it was a study we have supported through our project on that in America. That study analysed pain management throughout the state of Oregon and demonstrated significant complaints by family members of inadequate pain management, and this was in 1999. Moreover, Dr Quill outlined the good things about Oregon which made it, perhaps, an improved place for end of life care suggesting that it has the largest morphine availability of any state in the country. Again, it has had that since 1994 and it has led in that. We do not fully understand it except there are a large number of major pharmaceutical distribution companies there that may account for morphine being sent outside the state and not used within the state of Oregon. The aspect of physicians and patients attending many, many workshops, these were widely available around the state, I participated in several. They were predominately attended by nurses and predominately by nurses who had already expertise in pain and palliative care. Today, similarly with other states, Oregon gets a very poor grade, we call it an "E", a the number of palliative care units within their hospitals; the number of certified palliative care physicians or the number of nurses who are certified by the Hospice and Palliative Care Nursing Association. I do not want to be critical of Oregon because many other states are similar to Oregon, but I want to point out that when you begin to look at the hard numbers—as was done in this Robert Wood Johnson report card of states around the country—the only good thing which Oregon led on was the number of deaths at home as it may be a positive indicator.

  Q2124  Lord Joffe: This question is to Professor Foley. I wonder whether, when you distribute your article and send it to us, you can send us also a copy of the article by Dr Peter Goodwin, headed The Distortion of Cases in Oregon, who had rather more, perhaps, actual experience of what happened in Oregon than yourself?

  Professor Foley: I am very respectful that Dr Goodwin may have it, but it would seem to me that—and I think something which your Committee should consider—it should not be the advocate who has these details about the patients, but that a system should be open and transparent and a health division should have this information. We are terribly dependent on advocates telling us about patient information which the health division will not provide to us. In any type of open, transparent society where we are trying to better understand the needs of patients and their need for assistance at the end of their life, it would seem to me the Oregon Health Division should be repository of such information, not individual advocates. I cannot send you that article because I do not think I know which one you are referring to, but if you send me which one that is I will be glad to try and find it for you.

  Professor Quill: If you want to get a view from the lens of an advocate and an opponent about these issues, Dr Foley and Dr Hendon have written a book on this entire subject and, Peggy Battin and I have written a book covering some of the same issues. It can give you two different lenses to look at Oregon and other issues from each of our perspectives. If you have not had the opportunity to read those two perspectives, I think it can be helpful to try to understand our differing views on these complex issues.

  Q2125  Chairman: Is there any neutral person who has written a book?

  Professor Foley: I think you have raised a really important question and, as you deliberate and address this issue, it is so critical for there to be a neutral position. Because of the way the law was developed, it has constrained the Oregon Health Division from making this an open and transparent process. The data is not available, physicians who refuse to participate in physician assisted suicide are not asked to comment, their concerns are not in any way accumulated, interviewed or prioritised by the Oregon Health Division. At the same time, patients in advance are not asked to define why they want this, but rather six or nine months later their physicians are asked about this. In fairness to understanding how we can improve the care of the dying, any government which wants to support such a process needs to make it like any other medical therapy which is open, transparent, can allow for judgment of other clinicians, where there is no suppression of disagreement and where there is an openness which allows for this kind of discussion and debate rather than newspaper articles and articles written by advocates who have lots of information but no way for verifying that information because of the lack of access and confidentiality on the concern of patients. Such patients do not want such confidentiality, often they want good care and we need to be able to regulate that care as we regulate any other care. Therefore, creating such closed systems puts those patients at risk and puts physicians at risk and does not teach us how we can better improve the care for such patients.

  Professor Quill: There are genuine ethical issues involved in making some of this data available, partly because of the politically charged environment. People's privacy is violated on a regular basis outside of their choice. I agree with Dr Foley, we need to understand these issues, and Oregon is the laboratory where we have this opportunity to understand an open process. But we have to be very respectful of these vulnerable patients and their families, and how much potential there is to distort and misuse very personal information. We are also getting more and more reliable data out of Oregon from responsible researchers. For example, Linda Ganzini—who I think you may have met when you were out in Oregon—has interviewed many patients who are contemplating this possibility in real time. She is an experienced psychiatrist—one I believe who is quite neutral on this subject of legalisation—who found these patients did have the capacity to make decisions for themselves, they were not clinically depressed. In an incremental way, we are getting more and more meaningful data out of Oregon. It is at such a different level than the data we are getting from any other place in the country, that we need to let that continue to unfold and learn from it. The openness of the law has made this look possible, you simply cannot look at these issues anywhere else in our country at the same level.

  Chairman: On behalf of the whole Committee, I would like to thank you very much for your assistance in helping us to understand these issues. As you have both said, these are complex issues and it is sometimes hard to know where one has got reliable neutral data on which to proceed. Thank you very much, indeed.





 
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