Understanding post... The previous post lost a chart I had in the text -- so the later portion is garbled. I will try to fix that and repost in a more coherent form...

Understanding the "end-of-life" debate

Understanding the issues in end-of-life care. There is a great deal of current discussion of end-of-life care, standards are evolving, there is new legislation pending in Quebec, a Private Member’s Bill before the House of Commons and a Supreme Court reference. The Canadian Medical Association has conducted town-hall debates and the College of Family Physicians is considering its response. The CMA has updated its position paper on Euthanasia and Assisted Suicide. (http://policybase.cma.ca/dbtw-wpd/Policypdf/PD14-06.pdf) On the 25th August 2014 Gillian Bennett an 83 year old woman from BC committed suicide rather than slip further into helplessness and dementia. (This is a link to her blog “Dead at Noon.” http://www.deadatnoon.com/) Yet despite all of this there is still a great deal of confusion about the topic, or more properly, topics. And all the time we ask confused questions we doom ourselves to confused answers. Let’s try to lay the groundwork. First, I will not use the word “euthanasia.” Many people view the term as carrying a negative moral connotation. That is, many people believe that if an act is an act of euthanasia then that act is morally (or ethically) wrong. This just shifts the debate into a puzzle or argument about definitions and terminology – does such and such an act fall within the definition of euthanasia? The more interesting, and more direct questions concern the moral status of the act itself – should this act be permitted, why or why not? Second, this debate crops up in health-care and in broader social discussion under a number of different headings: end-of-life care, palliative care, advance directives, physician assisted suicide, physician assisted death, active and passive euthanasia, Do Not Resuscitate, (DNR) No Cardiopulmonary Resuscitation (No CPR), Allow Natural Death (AND) and so on. There are important conceptual, ethical and practical distinctions to be made between all of these terms, however, any of them can lead us into the broader discussion – and many of them could be the policy name for the process that governs practice within a particular health care organization. Any of them, including those that are relatively non-controversial or agreed-upon could be our gateway into a broader and more contested debate. The current state of practice Palliative Care Palliative care is defined by the World health organization (WHO) as follows: “Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.” Palliative care thus represents a way of seeing care, a philosophy of care that is not explicitly or necessarily about the end of a person’s life. Sometimes palliative care practitioners describe themselves as focussing on care rather than cure, on quality rather than quantity, and on the whole person rather than a disease process. In practice, a palliative care practitioner or team often gets called in far too late, for end-of-life care, when the patient is expected to die imminently, or when the patient is actively dying. “palliative care beds” in hospitals are often reserved for patients who are actively dying. This fosters a host of confusions. Sometimes people (and this can include both patients and practitioners) equate palliative care with end-of-life care, and resist it accordingly. This is unfortunate. Palliative care practitioners will normally argue strenuously that no patient needs ever to die in pain. That is, good palliative care can relieve pain and suffering at the end of a person’s life. The CMA consultation had as its primary conclusions that palliative care should be promoted and expanded and that access to palliative care should be far more readily available. Both these conclusions are uncontroversial. It is generally accepted that the process of providing adequate medication to relieve pain and suffering may have the anticipated but unintended consequence of shortening life. That is, it could turn out that if the patient continued in pain he or she would live longer than would be the case if that pain were properly controlled. It is accepted that providing good pain control in these circumstances is good medical practice and completely ethically justified. This concept of “anticipated but unintended” consequences is connected to the Catholic doctrine of “double effect.” Palliative sedation refers to situations where the patient is sedated to unconsciousness to relieve physical or psychic pain until the patient dies. Refusals of treatment There are slight variations by jurisdiction across the country. In general, however, it is accepted that a “capable” patient (That is, a patient who meets the criteria for capacity to consent to health care interventions.) is entitled to refuse treatments. This entitlement to refuse treatments extends to any treatment, including life saving treatments, and treatments that have already started. Patients frequently refuse potentially life-saving interventions, such as CPR, or intubation, or nutrition through feeding tubes. Patients’ reasons are various, some are religious, for example a Jehovah’s Witness’ refusal of a blood transfusion, but others are grounded in quality of life considerations. Ultimately though, the reasons for a patient’s refusal of care are irrelevant, if the patient is capable of consenting to treatment, he or she is entitled to refuse that treatment, on whatever grounds he or she wishes. In end-of-life situations such refusals of treatment may have the effect of shortening the patient’s life. The key ethical idea is a type of autonomy. Autonomy in this case comes in the form of “security of the person” in that my body is my own and no-one can interfere with it without my consent. Autonomy here is a negative freedom – a “freedom from,” rather than a “freedom to.” Confusion abounds here too. The requirement that a patient must consent to a treatment in order for the treatment to be instituted (with the exception of emergency interventions) gives rise to the “right” to refuse treatments, not a right to “choose” treatments – or better only to a right to choose treatments from amongst the treatments that have been offered by the appropriate health care provider. It is important to note that the patient has the authority to refuse treatments. This can lead to some confusion in practice. Some organizations require a physician to write a DNR order (DNR Do Not Resuscitate, sometimes DNAR, Do Not Attempt Resuscitation) to somehow authorize the patient’s refusal of treatment. This does not make sense. The patient’s refusal of treatment needs to be recorded and honoured, but it needs no authority other than the patient’s. (This is recognised by nursing codes of practice which expect nurses to record and respect a capable patient’s refusal of treatment, including a refusal of a resuscitation attempt.) In contrast, a DNR order may well be part of the appropriate notation if the physician has decided that resuscitation will not be offered as part of the care plan on the grounds that a resuscitation attempt would be futile or otherwise inappropriate. Current practice would expect that the physician or care team would gain consent to such a care plan before writing an order that includes DNR. This issue remains contested, it seems very odd to require a physician to seek consent to not do something (attempt resuscitation) that the physician in his or her best clinical judgment believes would be futile. This is the only situation I am aware of where consent is required to not do something useless. However, this is pretty much the standard practice. The same basic concept – that I am entitled to say what happens to me means that I could refuse not just treatment but other forms of care – including feeding. There are recent examples of patients who were clearly capable of making their own decisions who had terminal illnesses but who were not imminently dying who chose to forego food in order to end a life that, for the person concerned, was an unbearable burden. Withdrawals of Treatment A capable patient can refuse treatments – even after the treatment has started. This means that a patient can authorise the cessation or withdrawal of a treatment, including a life-sustaining treatment. This may mean that a health care practitioner is required to perform an action (such as disconnecting a ventilator) this can certainly result in moral burdens of care for care providers as in these cases they may well be performing an act that leads as a direct consequence to a person’s death. A physician can also determine that a treatment that has been initiated is now no longer indicated. That is, the treatment could be viewed as a “trial of therapy” where the anticipated or hoped-for outcomes have not materialised. It is within the physician’s scope of practice and authority to withdraw such treatments. The consent of the patient is not generally required because the physician has determined that the treatment is no longer indicated. In practice many physicians would seek consent to withdrawing a treatment in very many situations. But note the anomalous situations that this practice can give rise to. If patient consent was not forthcoming the physician or care team would be compelled to provide treatment they believed to either be pointless or positively harmful. (In Ontario there is a potential remedy to such situations through the Health Care Consent Act and the Consent and Capacity Board.) The Supreme Court of Canada in the Rasouli case determined that patients (or their substitute decision-makers) are required to consent to withdrawals of life sustaining treatments. This gives rise to the situation where care providers, if patient consent is not forthcoming, are required to continue to provide life-sustaining treatment even if the care providers believe that such care is inappropriate or futile in that there is no hope for a meaningful recovery. The Court was careful to try to limit this judgment to withdrawals of life-sustaining treatment only, and not more broadly to withdrawals of other treatments or to patient demands for treatments that physicians and care teams had not offered. (This decision applies in Ontario because it turns on an interpretation of Ontario’s Health Care Consent Act.) Advance directives and substitute decision-making The legislation varies across the country, but generally, whatever I can do while capable (refuse a treatment for example) I can do either through some form of written advance directive or through a substitute decision-maker. So, if under certain circumstances I would not wish to be resuscitated, or ventilated, or indeed have my pneumonia treated I can write an advance directive, or instruct my substitute decision-maker (In Ontario “power of attorney for personal care”) and those directives should be followed. Futile and Inappropriate A treatment is “physiologically futile” if it cannot bring about the effect for which it is intended. A futile treatment is inappropriate, but there are other ways in which a treatment may be inappropriate – cost, minimal benefit, and low probability of success being the obvious candidates. But, of course, what counts as too costly, or insufficient benefit and so on are all contested concepts. Physicians are certainly not obliged to offer treatments that they believe to be physiologically futile. (With the possible exception of a resuscitation attempt – see above.) The question of physiological futility falls within the physicians’ scope of practice, expert judgment and authority. I would argue that physicians are obliged not to offer treatments they believe are futile. “Inappropriate” treatments are another category altogether. It is far less clear that physicians have the unambiguous authority to determine the inappropriateness or otherwise of a treatment. All of the above is acknowledged in the preamble to the CMA position paper on Euthanasia and Assisted Suicide: Euthanasia and assisted suicide, as understood here, must be distinguished from the withholding or withdrawal of inappropriate, futile or unwanted medical treatment or the provision of compassionate palliative care, even when these practices shorten life. The CMA does not support euthanasia or assisted suicide. It urges its members to uphold the principles of palliative care. So, if that is the current state of practice, what changes are we looking at? Let’s use the CMA position paper as a launching point. The position paper on Euthanasia and Assisted Suicide offers some definitions. We will look at them, not because they are good, but because they are out there and illustrate some of the confusions. CMA definitions Medical aid in dying refers to a situation whereby a physician intentionally participates in the death of a patient by directly administering the substance themselves, or by providing the means whereby a patient can self-administer a substance leading to their death. Problems with this definition It masks distinction between physician assisted suicide (where the patient performs the act of killing) and physician assisted death where the physician performs the act. Many people take this distinction to be ethically significant. The phrase, however, is useful because it identifies the territory under discussion without the baggage of the term “euthanasia.” We will still have to decide exactly what acts are under discussion, is it physician assisted suicide or physician assisted death? Should both, or either be permitted? Physician assisted death means that a physician knowingly and intentionally provides a person with the knowledge or means or both required to end their own lives, including counseling about lethal doses of drugs, prescribing such lethal doses or supplying the drugs. This is sometimes referred to as physician assisted suicide. Problems with this definition This is more commonly called physician assisted suicide, and the definition presented would have been fine as a definition of physician assisted suicide. The Quebec legislation uses the phrase “physician assisted death” to describe the practice, permitted under their new legislation, where the physician intentionally administers a lethal dose of medication – as part of palliative care. Euthanasia means knowingly and intentionally performing an act, with or without consent, that is explicitly intended to end another person's life and that includes the following elements: the subject has an incurable illness; the agent knows about the person's condition; commits the act with the primary intention of ending the life of that person; and the act is undertaken with empathy and compassion and without personal gain. Problems with the definition The consent issue is crucial, the ethical evaluation of the act concerned may well turn on the matter of consent. So, this definition runs together practices that many would consider unethical with practices that many would not. This does not help the debate. It is also odd to include “empathy, compassion” etc. Of, course, these things are good but they are not part of a definition of “euthanasia.” The standard philosophical analysis of “euthanasia” has a variety of categories, active and passive, voluntary, non-voluntary, and involuntary. Categories of “Euthanasia” Active An action is performed with the intention of ending a life Passive A potentially life-extending or saving action is not taken Voluntary At the capable patient’s request or With the capable patient’s consent Not currently practiced in Canada Would be permitted under Quebec legislation Practiced in Canada DNR (patient request or consent) Patient refusals of treatment Patient refusals of life support Patient refusals of feeding Non-voluntary Patient is not capable of consent * Unclear if this would be permitted under Quebec legislation or under other proposals to change Canadian law. Practiced In Canada Refusals of resuscitation, treatment, life support, but probably not refusals of feeding, authorized by an advance directive, power of attorney for personal care, or substitute decision-maker Involuntary Against the patient’s wishes Murder Contested Medical DNR against patient request or without consent Withdrawal of life-sustaining treatment without consent, forbidden in Ontario (Supreme Court of Canada, Rasouli decision) * There are important distinctions embedded in the phrase “not capable of consent.” I may not be capable of consenting, or making my wishes known now but I may have been capable of making my wishes known in the past. Current legislation, which varies across Canada, permits me to make determinations now – either through an Advance Directive, or through instructions to my Power of Attorney for Personal Care, or substitute decision-maker, about the care I would not wish to receive at some time n the future. See the box Non-voluntary, passive. It is not clear, though highly important, whether under proposed changes to legislation I would, while capable, be able to request active euthanasia to take place at some later time when I was not capable. (Non-voluntary active.) But there is also a category of patient who has never been capable of making his or her own medical decisions. This would include infants or young children or adults who have never been capable. Under current health care legislation these patients would have some form of substitute decision-maker make treatment decisions on that person’s behalf. If active euthanasia were legalized should substitute decision-makers (or anyone else for that matter be permitted to request or consent to euthanasia for a person who had never been capable of making his or her own decisions? “Euthanasia” has become such a value-laden term it has become very difficult to get past the word to look critically at the actual practices we are concerned about. The CMA simply rejects the entire category of “passive” euthanasia as euthanasia. Euthanasia and assisted suicide, as understood here, must be distinguished from the withholding or withdrawal of inappropriate, futile or unwanted medical treatment or the provision of compassionate palliative care, even when these practices shorten life. The CMA does not support euthanasia or assisted suicide. It urges its members to uphold the principles of palliative care. So, let’s leave the word and focus on the deeds, and over to you: Should physician assisted suicide be legalised in Canada? Should physician assisted death be legalised? What should the limits be? Terminal illness? Intractable physical (psychic pain)? Voluntary (at the request of the capable patient) Can this request come in advance (an advance directive?)

Rasouli, The Supreme Court of Canada and the Elephant in the Room

On the 18th of October the Supreme Court of Canada handed down its decision in the case of Hasan Rasouli. The Court was split 5-2 with Justice McLachlin writing for the majority and Justice Karakatsanis for the dissenters. The facts are that Hasan Rasouli has been on life support in a Toronto hospital since 2010. His physicians (Cuthbertson and Rubenfeld – the appellants in this case) determined that the patient was in a persistent vegetative state, with no prospect of a meaningful recovery. They recommended discontinuation of life support. The physicians further stated that they did not need the consent of the patient (or in this case his substitute decision-maker, his wife, Parichrer Salasel) because, as physicians, they had the authority to determine whether or not any particular treatment was appropriate. It is this issue that has wound its way through two levels of court in Ontario and finally to the Supreme Court of Canada. The case has been presented as about power and authority in health care decision-making. Specifically, the case concerns who has the ultimate authority to decide whether or not life-sustaining treatment should be discontinued, but by extension, also concerns who has the authority to decide on the discontinuation of treatments generally and even more broadly who has the authority to decide who gets what treatment. In Ontario the practices of consent to treatment are governed by the Health Care Consent Act. The basic provisions of that Act are expressly intended to promote patient autonomy. The Act states that there should be no treatment without consent and then lists the processes one should go through if the patient is not capable of consenting him or her self. The Act further creates an agency: The Consent and Capacity Board which has the jurisdiction to adjudicate in certain types of dispute between care-givers and substitute decision-makers. The overall framework for authority in health care decision-making is thus reasonably clear: 1. Patients present with symptoms, 2. The physician or health care team diagnoses and proposes appropriate treatments. 3. The patient, if capable, or substitute decision-maker if not, can then choose from the range of offered options or refuse them all. This is a pretty common-sense view. I the patient know my own body and decide which sort of problem I should take to a health care practitioner (Step 1.) The expert, health-care practitioner (the physician typically) is trained to interpret and understand the symptoms I present and to recommend appropriate treatments. (Step2.) I must then decide if I wish to undertake any of the offered treatments – given my beliefs and values and the significance to me of any side-effects of the treatments. (Step 3.) Ideally, this whole dance is conducted in harmony, each partner moving in step and with agreement. For the most part the ideal is the reality. Patients and physicians typically agree about what can and should be done and work together to achieve the mutually agreed-upon objectives. Authority in health-care decision-making is often irrelevant. If we agree we do not need to worry about who has the authority to make what type of decision. But the underlying authority structure is there. Physicians propose treatments and patients get to choose from amongst, or refuse. In the case of Hasan Rasouli the physicians initiated life support measures (which were agreed to by the family), the physicians then determined that those life sustaining were inappropriate and should be discontinued. The substitute decision-maker disagreed. The physicians said – we do not need your agreement, this decision is within our authority. The substitute-decision-maker then took that issue to court to prevent the physicians from removing life-support without her consent. The Supreme Court of Canada has ruled that the physicians in this case do not have the authority to discontinue life support without the consent of the patient’s substitute decision-maker. So let us unpack this dispute. It was within the physicians’ authority to determine that the initial admission to the Intensive Care Unit (the ICU where the life-sustaining treatment was administered) was warranted. The patient or substitute decision-maker had to consent, but it was within the physician’s realm of expertise and authority to propose such an admission and the course of treatment that was subsequently offered, accepted and administered. So, logically, if the physician has the authority to decide that a particular treatment is warranted by the patient’s medical condition, and is appropriate, then he or she must have the authority to decide that the same treatment is not warranted – or indeed, no longer warranted. No consent would have been required from the patient if the physicians had determined that an ICU admission was not warranted, so, by parity of reasoning no consent is required now that the physicians have decided that the ICU admission is no longer warranted. In the health care literature the word “futile” is often used in this context. The basic argument is that a judgment that a particular treatment or intervention is “futile” or “medically futile” is an expert determination, which falls within the authority of physicians. If “medically futile” means cannot bring about the medical effect for which it is intended then I would support this view. However, the term “futile” is often used to cover far more than this. It is often used to mean not worthwhile, or inappropriate, or inappropriately costly. In Mr. Rasouli’s case continued life-sustaining treatment is “futile” in that there is no real prospect of him returning to any meaningful state of health. So, if the goal of the treatment is to return him to a state where he can interact with his family and have some sort of meaningful recovery, then in the judgment of all of the physicians who have seen him, the treatment is futile, because that is vanishingly unlikely to happen. However, the life-sustaining treatment is not “futile” precisely because it continues to sustain his life. In the Rasouli case this issue was argued using the terminology of “medical benefit.” It was argued that because Mr Rasouli would not gain a “medical benefit” from continued life support, and because “medical benefit” was an expert concept within the authority of physicians to determine, consent was not required to discontinue treatment. It was also argued that the treatment was not only pointless, but positively harmful. The process of caring for Mr Rasouli involves all sorts of unpleasant interventions, which would be warranted if there was a prospect of recovery, but are simply cruel if not such prospect exists. Further, Mr Rasouli faces inevitable physical decline. So, discontinuation of treatment now will prevent future harms later. This argument is more problematic and again brings us back to the issue of authority in decision-making. If we take issues of patient autonomy seriously then we have to accept a patient’s determination of what constitutes a “harm.” An expert physician may be able to tell me about the physical or physiological consequences of a particular course of action or treatment, but I get to decide whether that physical state constitutes a “harm” to me. So, in the best known examples, a physician could tell a practising Jehovah’s Witness that failure to accept a blood-transfusion will result in death, but the patient him or her self decides whether death is a “harm” or less of a “harm” than accepting blood. I would say, in Mr Rasouli’s case, if we take his autonomy seriously, he, or his substitute decision-maker should be entitled to determine if continued physical life – even under the awful conditions experienced by Mr Rasouli, and even without any prospect of a meaningful recovery – is something he would want, and something he is entitled to demand. The Supreme Court of Canada ruled that these arguments (and a variety of others) were unconvincing. Justice McLachlin said that because this situation occurred in Ontario, where these matters are governed by the Health Care Consent Act, the issue turned on statutory interpretation. In the opinion of the majority of members of the Supreme Court of Canada, the Health Care Consent Act had to be interpreted to mean that a withdrawal of life-sustaining treatment should be considered a “treatment.” It therefore requires consent. Furthermore, the Court said, the Health Care Consent Act has created the Consent and Capacity Board (CCB) which has the jurisdiction to rule in some cases of disputes between health care providers and patients and their substitute decision-makers. Before we meet the elephant that has been lurking in the room it is probably worth pointing out that under the Health Care Consent Act the rulings the Consent and Capacity Board (CCB) can make are quite limited. Substitute decision makers, under the legislation, are obliged to make the decisions they have been instructed to make by a previously capable patient. The CCB can be called upon to uphold the wishes of a patient in the event that a substitute decision-maker is not following those instructions. In the case of a dispute about the “best interests” of a patient both the substitute decision-maker and the CCB are required to consider the values of the patient concerned and his or her health context in determining what to do. It is not clear to me how the CCB could determine, in a case like Hasan Rasouli’s how continued life support was not in his “best interests.” Sure, he may not recover with continued life support, but he will die without it. And if continued life is a value to him whatever its quality (which his wife and substitute decision-maker staunchly defends) then I do not see what grounds the CCB could have to overturn that decision. The Elephant Justice McLachlin states in paragraph 4 of the judgment: “The Court’s task is simply to determine what the statute (The Health Care Consent Act) requires. I note that the parties did not address resource implications or Charter issues in this appeal.” This entire case was presented and adjudicated as a dispute between physicians and patients over who had the authority to make a certain type of decision. The real answer is neither – because the wrong question is being asked. The big, important, future-of-health-care-in-Canada question is not: Do physicians or patients have the authority to make this type of decision? (Do the crew or the passengers have the authority to re-arrange the deck chairs on the Titanic?) but rather: Who decides what we are prepared to pay for in Canadian Health Care and how do we make that decision? (How do we avoid the iceberg?) It is estimated that it costs almost a million dollars a year to keep a patient in the ICU. If, for a particular patient, there is no reasonable prospect of a meaningful recovery is that a good use of scarce health-care resources? Who should make that decision – the physician or patient concerned? Neither is a good answer. The CCB – but no the legislation does not permit them to make that type of decision. The Rasouli case and decision has been a much debated, much anticipated sideshow. The real questions concern the type of health care we, as a community, are willing to provide and to pay for. The real challenge is to develop meaningful processes that allow us to grapple honestly with these questions and the consequences of our decisions. If health care resources can be seen as a single pie, any slice given here is a corresponding slice not available to do some good elsewhere. Maybe the Rasouli decision will prompt a re-examination of how we slice the pie. Robert Butcher, October 21st 2013

Ethics, personhood and the persistent vegetative state: New evidence new obligations?

Ethics, personhood and the persistent vegetative state: New evidence, new obligations? A vegetative state is diagnosed according to the following criteria: (1) no evidence of awareness of self or environment and an inability to interact with others; (2) no evidence of sustained, reproducible, purposeful, or voluntary behavioral responses to visual, auditory, tactile, or noxious stimuli; (3) no evidence of language comprehension or expression; (4) intermittent wakefulness manifested by the presence of sleep-wake cycles; (5) sufficiently preserved hypothalamic and brain-stem autonomic functions to permit survival with medical and nursing care; (6) bowel and bladder incontinence; and (7) variably preserved cranial-nerve reflexes (pupillary, oculocephalic, corneal, vestibulo-ocular, and gag) and spinal reflexes. (Medical Aspects of the Persistent Vegetative State,The Multi-Society Task Force on PVS, N Engl J Med 1994; 330:1499-1508May 26, 1994DOI: 10.1056/NEJM199405263302107) The diagnosis is not normally made until the patient has been in that state for at least three months. Hence: “persistent.” In what follows I will try to lay out the arguments and the issues as clearly as I can. This may be bluntly put but we have to remember that the patients under discussion are real people with families who love and care for, and about, them. The key ethical elements of this definition are lack of awareness of self or environment (we will return later to the relevance of “evidence.”) Many would argue that the key and essential element of what it is to be a “person” is that one has an awareness of one’s self as a self and an awareness of one’s self in distinction to one’s environment. That is, one knows or is aware of oneself as a thinking thing, an agent of consciousness that can imagine, hope, wish, fear, choose and so on. (This goes back at least to Descarte’s “cogito ergo sum” I think therefore I am.) In the context of a patient in a persistent vegetative state this idea is important for subsequent care. If the vegetative state persists, or more particularly if it is permanent, then that patient is not capable of the experience of being a person and will not recover that capacity. It may then be possible to withdraw artificial life-sustaining measures, without harming the person (because the person is in some sense, already gone.) This is reflected in practice and in the things that families say about their loved ones and care teams say about their patients. If the person is no longer capable of experience and is no longer aware of him or herself as a person then he or she is already “gone” and all we are doing is caring for that person’s body. I should point out that this is a judgment from the outside and is importantly different from saying that the person concerned would not wish to live this way. Generally (although the law varies from jurisdiction to jurisdiction) the task of a substitute decision-maker is to make the decisions that he or she was instructed to make by the patient when that patient was capable of making decisions, or if there are no such instructions, the decisions the person concerned would have made had he or she been able to do so (that is, decisions in accordance with that person’s values). This is where statements like “She would not wish to live this way...” or “He was always really active and in control, he would hate to be like this..” become important. It is also worth noting that the exact state of the person’s consciousness or awareness under these conditions may not be a determining issue. A person could say: “The worst thing I could imagine would be to be aware and trapped inside my own body unable to do anything or communicate, I would hate to live that way.” Or, he or she could say: “If I was unaware and unconscious with no real prospect of a recovery I would hate to have my body kept alive like that...” But, of course, people also say and believe things that lead in the opposite direction. Some people, particularly those with certain religiously grounded views (or in some cases as a result of personal choice), believe that the essential part of a person is that person’s “soul,” which is present in that person’s body until the time of death (or sometimes shortly thereafter.) From this perspective it might be appropriate to argue that, regardless of consciousness or awareness, the person’s body should be kept alive as long as possible. What we should do in cases like these, who has the power and authority to make what decisions, what we, as a community, owe to persons in these states are all contested territory. Clearly, patients and their substitute decision-makers, as described above, are entitled to decline further care. But can physicians or health care teams decline to provide continued care, if in their professional medical opinions, such care would be “futile or inappropriate?” (See previous blog posts on “futility and inappropriate care.) Finally, what must we, as a community fund? Are we obliged to pay for care for a person’s body beyond the time when there is any reasonable prospect of a meaningful recovery? It is hoped that in Canada some direction on these issues will be provided by the Supreme Court when they hear the Rasouli case in December 2012. So now to the potentially game-changing new evidence. Recent media reports have highlighted the work of Dr. Adrian Owen in London Ontario. Basically, his technique involves scanning the brains of patients in a fMRI. The patient is instructed to imagine performing a vigorous activity, such as playing tennis. If the patient is capable of understanding and responding to such a command his brain will show characteristic patterns of activity which start and stop in accordance with the command. By contrast the patient may be asked to imagine performing a more sedate activity such as moving from one room to another in his house. This too results in a characteristic pattern of activity. Those two activities can now be linked to yes and no, and act as the answers to yes/no questions. Dr. Owen’s research over the last few years has shown that about twenty per cent of the patients he has seen who have been diagnosed as being in a persistent vegetative state are able to answer yes/no questions of this type appropriately. The breakthrough reported recently involves a local patient who was able to respond to the question: “are you in pain?” (He indicated that he was not.) The “game-changing” nature of this research is that it shows that some patients who were clinically determined to be in a persistent vegetative state, are, in fact, not in such a state at all, but rather are aware and “conscious.” The key components of the definition of a “vegetative state” were that there was no evidence of “awareness of self or environment.” Until now, “evidence” was taken to mean clinical evidence. Dr. Owen’s technique introduces a new way of providing evidence of awareness of self and environment. So what are the ethical implications? First, there will be increased demand for the type of testing that Dr. Owen has employed. In media interviews Dr. Owen has stressed the highly complex and involved nature of his procedures and the very specific conditions that need to be met in order for the testing to be undertaken – including the medical stability of the patient and the possibility that the patient can travel to the fMRI. It is not clear how medical practitioners, and their funding agencies, will respond to increased demand for this procedure. Second, if it can be shown that patients who were thought to be unaware and therefore incapable of making decisions about their own medical care are in fact shown to be aware, then maybe they can be shown to be capable of making decisions about their care. In which case, if this technology became more readily available it could be a tool to empower patients to make their own decisions about care. Third, there is an important human dimension to all of these discussions. Families often say that they see signs of awareness in their loved ones that are not picked up by the medical professionals. Families often say that they believe their loved one is “still there” somehow trapped inside, despite medical evidence and belief to the contrary. Dr. Owen’s work shows that some of those families are right. And finally, what are the impacts on other areas of care? If there is increased demand for these procedures and increased demand for prolonged medical treatment what impact does that have on other areas of care – does the pot get bigger or do we simply redistribute what is already in the pot. Lots of questions... What do you think?

A little more on Baby Joseph

The current development on this story is that Baby Joseph has been transferred to a US hospital where a tracheotomy has been performed. The longer term objective is to transfer him home to die. So what should we say – or think about this outcome. If the procedure could be performed in the US why was it not performed here? Well, none of us were in the room when these questions were discussed but the course of events could have gone something like this:

The Canadian health care team believed that performing a tracheotomy with the sole purpose of sending the patient home to die was a cruel and unnecessary treatment. They believed that the patient would be harmed by the procedure which would bring no benefit to the patient. They believed that they have a commitment to the patient not to cause harm, in particular not to cause unnecessary harm. They understood that the parents wished to take baby Joseph home but they were not prepared to harm their patient in order to enable that to happen.

But if that is so how could another medical team come to the exactly opposite conclusion? How could they be prepared to perform the procedure? First, I think we need to assume that the baby’s medical condition has not changed, that is, the US health care team also believed that the purpose of the tracheotomy was to enable the child to return home. They would have to believe that the procedure could be performed without harming the patient and also that if that could be done it would be worthwhile doing it to benefit not the patient – but the patient’s family. I think they probably made a decision to perform the procedure on the child for the benefit of the family, believing that that could be done without harming the child.
How does that sound? Some commentators have accepted precisely that view. They have argued that if the procedure could be performed without causing suffering or discomfort to the child then why not perform the procedure to allow the parents’ the closure they so fervently desire. Why not “treat” the patient to heal the family?

What do you think?

I do think there is still something more to say. Even if the procedure causes no further suffering or discomfort I still have grave worries that it should be performed. “Treating” the patient to heal the family entails using that patient, that person, as a means to someone else’s objectives. It means using that person as a thing – an object to be, in this case, cut, to benefit someone else. I think, in practice, this is not uncommon. Think of the times an elderly patient is resuscitated, at the demand of the family, only to languish for days or weeks on life support in the ICU, only to die without ever having regained consciousness. All too often this is done – without there being any prospect of benefit for the patient just so the family can say – and feel “We did everything...” I think we can do better. I think we can make it far clearer that we have “Done everything” and that often merely keeping a person’s body alive – even if we have the technology to do so brings no real benefit. I think it is possible for good and loving families to work with their health care teams to do everything that might benefit the patient – but nothing that doesn’t.

What do you think?

Navigating Tragedy(ies): The sad story of Joseph Maraachli

Navigating tragedy(ies)

The sad story of baby Joseph Maraachli and his family has captured headlines in Canada and throughout North America. The publicly available information is as follows: he was born in January 2010 and appeared healthy. In May of last year he suffered seizures and spent a month in a children’s hospital in Detroit. Then, last October he stopped breathing and was admitted to the Children’s Hospital in London where he remains. He has been diagnosed with a progressive neurological disorder and is described as being in a vegetative state. His medical team does not hold out any prospect of recovery.

The first tragedy, of course, is the tragedy of this little boy and his family. It is easy to imagine that they went through this pregnancy with all the hopes, dreams (and fears) that most parents have as they prepare to bring a new life into the world. You can imagine their joy as they took their little one home – prepared to welcome this new member of their family. But then – every parent’s worst fear, something turns out to be wrong – seriously and disastrously wrong with their little baby. What are parents supposed to do – and feel when faced with the tragic prospect that their baby is sick, so sick he will not recover , so sick he will inevitably die, so sick that the very best medical experts we can find with all the power of contemporary technology are helpless to make this little one better? How does a parent wrap his or her head – and heart around that message. What would you (or I) or any parent do? Deny? “It can’t be true, there must be a mistake, what about another opinion? What about something else, what about another doctor another hospital, another treatment... What about..? “ How does a parent make the awful realization that now the best he or she can do for that beloved child is provide care and comfort as he dies?

The second tragedy faces the medical team that cares for that little boy. They all came into health care because they care, they wanted to spend their working lives helping make people whole and well. They chose paediatrics for the joy that comes from caring from – and curing little ones, young people who can then move on to lives full of rich promise. But sometimes they can’t. Sometimes with all the skill and knowledge – and all the technology in the world they can’t fix, all they can do – just like the parents is care and comfort as the little patient dies.
So now the stage is set for the third tragedy. What we all seek in health care is agreement. We want patients and care giving teams to agree on and understand the diagnosis, the prognosis, the course of treatment and the expected outcomes of that treatment. All the actors in this tragedy want the same thing. Everyone wants what is best for little Joseph. Our third tragedy is disagreement about what would be best for him. The care giving team believes, in effect, that it would be best to let nature take its course. They believe that we should stop intervening to prolong the suffering of this little one and that he should be allowed to die peacefully; well cared for, and comfortable. The family believes something different. Perhaps they believe that all of the treatment options have not been exhausted. Perhaps they believe that he could be better cared for elsewhere. They want further surgical interventions; surgeries the care giving team believe would be not only pointless but actually harmful to the little patient, the little person, the son who is the centre of all this care.

And so this private family heartbreak becomes public. The disagreement switches to a public agency, the Provincial Consent and Capacity Board, and subsequently the courts to arbitrate what is best for little Joseph. This tragedy appears to make opponents of parties who all seek the same thing – what’s best for Joseph. But there are no opponents here, and there are certainly no winners or losers. There are only different views, different views on what would be best for this little boy given his diagnosis, his prognosis, possible courses of treatment and their effects and consequences. The Consent and Capacity Board, is a neutral, independent body charged with the protection of the most vulnerable members of our society who are not able to speak for, or protect themselves. It, and subsequently the Court, heard those different views and determined that the course of action being proposed by the medical team was in the best interests of Joseph.

Is this a “good” outcome? What on earth does “good” mean here? This is a tragic story with consequences that will haunt those involved for the rest of their lives and the rest of their careers. Everyone would have loved it had Joseph got better and went home. But that did not happen. Everyone wants what is best for him, and everyone would love to get to that place by agreement. But we have not managed that yet – so we are stuck with playing things out through the Consent and Capacity Board and the Courts. It is imperfect, and it cannot relieve the heartbreak, but it does keep Joseph and his interests at the very centre of the discussion and the decision-making. And that might well be the best we can manage.

On "Rationing" in Health Care

For many years the Lung Association in conjunction with the Ontario Thoracic Society have featured debates as part of the format of their conferences. These debates are intended to be a serious and provocative look at a significant topic but presented in a way that is engaging and at least a little playful. I was involved in one of these debates over the weekend on the topic of “rationing” in universal health care. As it turns out I was charged with defending the view that “rationing” ought not to be a part of universal health care. The actual content of the debate – and the cut and thrust of the debate format are not really the focus of this post – but the underlying issues that rose to the surface are worth discussion.


There are some things that are clear. Demand for health care services is unlimited – and supply of those services – or the resources to meet the demand is limited. So there has to be some way of matching the supply with the demand, some way of allocating the scarce resource. On the rationing side of the debate it was argued that, from an economist’s perspective, anything other than a free market entails rationing (by definition) so, as we do not have a free market in health services there must be rationing. Unfortunately the debate got rather stalled at this point – it became a discussion of what the word or concept “rationing” might mean. I think it is quite possible to argue in ordinary language that “rationing” means something like equal shares or allotments but I don’t think this is the real issue – the issue that actually warrants discussion is what do we do when our unlimited demand for health care services outstrips our capacity to meet that demand?


There are several special features of health care (or perhaps more properly we should call it “sickness care”) that warrant our particular attention. In the first place one does not need “sickness care” until or unless one is sick. That is, “sickness care” responds to a need, perceived or actual. On our model of sickness care we are not required to allocate the resource to those who are not sick, to those who do not need it. Next, health or sickness care services can only be delivered by professionals with a highly regulated form of training. And finally, on our model of health care, those services are, more or less, only paid for by a single payer – the government.


Now we can ask the interesting, and difficult, questions. Who decides what health or sickness care services should be paid for by the government? And what sort of a decision is this? I think these questions are interesting and difficult because they require a wide range of different types of expertise to answer – and they do not fall cleanly into the decision-making jurisdiction of any neatly defined entity. So, the decision about what health needs should be funded is not simply a “medical” decision to be made by medical practitioners. Nor is it simply an economic decision to be made by health care economists, nor is it just a political decision to be made at the ballot box. Rather it is a question – or series of questions about what we, as a community, value – and how our values in health care stack up against other community values, like education, or security, or roads, or art – or indeed the ability of each of us to spend our own money as we wish. Let’s make this concrete – do we as a community wish to fund keeping a person’s body alive when there is no reasonable prospect of a meaningful recovery? Do we spend tens of thousands of dollars on a cancer drug that may extend life by a couple of months? What other things are we prepared to forego, including funding for prevention in health care, in order to make those expenditures? Who should make those types of decisions – and what should count as a reason one way or the other?


But there are more questions that are worth asking. What do we, should we, say about those health care services we, as a community, decide should not be funded? If we choose not to fund the cancer drug that may only bring a couple months of extended life, should we allow individuals to spend their own resources as they wish and purchase health or sickness care that the community is not prepared to fund?


I think these are the difficult choices that we currently face in health care. I think this discussion can easily get derailed by a focus on the concept of “rationing” which can obscure the real questions and distract us from the difficult task at hand. What do you think?