 Hi there, I'm Sheila Wilderhead, I'm Associate Director of the Health Law Institute and it's my pleasure to introduce to you our speaker for today, Professor Barbara Noah. Barbara is a professor of law at Western New England University School of Law and we're very lucky to have her with us this term at the Schulich School of Law as a Schulich visiting scholar. In connection with that she recently led an intensive course for our students in end-of-life law and policy, something that we'll hear more about today. So Barbara's teaching and research has focused primarily on health law, including legal and ethical issues in end-of-life decision making and comparative end-of-life law, as well as law and policy relating to pediatric health, clinical research and racial disparities in the delivery of healthcare. Apart from her prolific record of research, Barbara has sought in her work to bridge research and practice researchers on hospital ethics committees and institutional review boards in her home state and prior to that in Florida. So with that, let me just pass the mic over to Barbara Noah. Thank you very much for that nice introduction and I'm really thrilled to be here in Halifax and to be able to participate in this seminar series. I've enjoyed attending it so far so it's great to be part of it. I'm going to talk primarily about end-of-life treatment in the United States but with some cross-references to Canada and with a focus on the law of informed consent, how it operates and its limitations which are significant. I'll also comment on the broader political, practical and cultural obstacles that we face in making end-of-life decisions in the U.S. and along the way I'll point out some of the interesting differences between the U.S. and Canadian systems of healthcare that impact how end-of-life law is delivered. So just to give you a little guide of where I'm going here, I'm going to start out by identifying the central problem, then talking a little bit about some of the challenges in addressing the problem, then talking a little bit about informed consent law and its limitations and then proposing a few solutions which also have really big limitations. So that's the plan and let me start with a case study. I apologize for all of the text on the screen but I'll talk us through it. This is unfortunately quite a common scenario where I come from. This is a real case. We have a 73-year-old man who was admitted via the emergency department and it turns out that he has lung cancer with metastasis to the brain. The patient refused further invasive tests, said he had watched his wife die of this disease and he didn't want tests or life-prolonging treatment. Various physicians pressed him to undergo lung biopsy, which he agreed to. The biopsy confirmed the cancer. He refused surgery to resect the cancer in the lung and brain and was discharged after 21 days in the hospital with full-time home care. He was re-admitted three months later after suffering grand mal seizures and it was clear that the metastasis in the brain had worsened. The patient's son requested a do not resuscitate order based on his father's prior wishes. The neurology team again recommended surgery to resect the tumor in the brain, but the family declined. Over the next three weeks the patient received all sorts of things that you can read there, including being fed through a nasogastric tube. And although he was minimally responsive he managed to remove the tube multiple times. He was then placed in restraints and after 24 days of hospitalization the family was persuaded to accept a surgically implanted feeding tube. The tube was surgically inserted on the 29th day. The patient had cardiopulmonary rest and died the following day. So this case illustrates several dimensions of what I'll call overutilization of care, but I'll define that term carefully. The patient suffered unnecessarily, probably spent a lot more on health care costs than if his preferences had been honored. He died in the hospital rather than at home and most importantly he received care that was inconsistent with his expressed wishes. His family seems to have wavered between respecting his wishes and being persuaded to accept additional interventions. So this is a patient who spent 51 days in the hospital after expressly saying he wanted no tests and treatments. So really what this talk is about is an attempt to explain why this sort of thing happens and what we can do about it. So we also need a quick bit of context to understand why it's particularly difficult in the U.S. to implement wide-ranging changes in how end of life care is delivered. As you all know the U.S. has a fragmented, inefficient and quite inequitable health care system. We only offer universal governmental supplemented coverage through our Medicare program which only begins for patients for people aged 65 and over. The Medicaid program which is a joint state and federal program that's far more generous in some states than others covers people with very low incomes and serious disabilities. We also have a Veterans Administration program. Everybody else is left to fend for themselves although the Affordable Care Act which you may know as Obamacare now provides some help with that but for how long? We'll see. The fortunate among us receive health insurance through our employers usually with substantial contributions from our paychecks plus copayments, deductibles, caps and exclusions. Other people who are trying to purchase insurance individually rely on support and subsidies from the ACA. And a fair number of people in the U.S. still go bare and just have no insurance at all. By comparison of course you Canadians have a single payer by province system that provides everybody with a basic package of health benefits plus private supplementary insurance for those who choose it and can afford it. And I think that's about two thirds of Canadians who have that as well to cover items and services not covered under the provincial plans. And it's far from a perfect system. I've heard complaints about it since I've been here but I have to say coming from my perspective it's really admirable that you have coverage of everyone. So you might be wondering which countries in the world are the best place to receive end of life care what they call the best place to die. In 2015 the Economist Intelligence Unit research team published its latest quality of death index which ranks palliative care around the world. And among the rankings in the top 15 the United Kingdom came in at first place which it did last time as well. The U.S. at ninth and Canada at eleventh place. The rankings are based on a complicated scoring method which I won't even try to explain but basically it's a combination of quantitative and qualitative indicators across various categories. And although Canada ranks slightly behind the U.S. overall it ranked ahead of us on several factors including quality of palliative care and availability of human resources. So the report makes the point that cultural shifts are needed from a mindset that prioritizes curative treatments to one that values a palliative approach that regards dying as a normal process and really focuses on quality of life for dying patients and their families. The report also delves deeply into the definitions and integration of palliative care with treatment at an early stage after diagnosis of terminal illness. And there's really good evidence that the early integration of palliative care not only improves outcomes for patients but also saves substantially on costs. On this measure the U.S. appears to be doing rather better than Canada with substantially higher access to palliative care and hospice on average although we don't use it the way we should as I'll explain. Of course our health care delivery system and our culture are very different than that in the U.K. or Canada as I just mentioned. The basic point that's kind of underlying some of my remarks from here forward is that we have some systemic and structural barriers and cultural barriers to improving the quality of care that we provide at the end of life compared with other countries. For us there's no easy top-down solution to the problems that I'm going to talk about. Canada appears to face many of the same challenges to those in the U.S. but at least has the advantage of uniform coverage and the provincial health care delivery system. And that can really help to implement reforms more efficiently than we can in the U.S. even in the context of our Medicare program. And my sense is that while there's plenty of controversy and discussion about these matters in Canada, Canada is less burdened by extreme reactionary efforts to interfere with any policies that might scale back care at the end of life. So I'll say more about that too. So palliative care, the discussion of quality of palliative care access is really only part of the story. Although the perception is that the U.S. way over-utilizes end-of-life care and in some ways it does, it's not all bad news for the U.S. So a different study conducted by JAMA that just looked at the care of cancer patients across seven countries had some interesting results. The U.S. had the lowest percentage of deaths in hospital, just over 22 percent, while Canada had the highest percentage in hospital deaths at 52 percent. But the U.S. had the highest rate of intensive care unit admissions in the last half year before death. And then on spending, Canada spent a bit more than we did per patient. England spent only $9,332. The cost comparisons are all in U.S. dollars and I'm not sure how accurate they are, but we're spending quite a bit on end-of-life care. Part of the reason I think that why more Canadians die in hospital probably has to do with the fact that hospice care, both inpatient and home hospice, is not as widely available as in the U.S. A different Canadian study found that 45 percent of cancer deaths occur in hospitals with wide variation by province. And many of those patients who were admitted to hospital could have received palliative care in a less acute setting, but didn't, which suggests an unmet need for community-based services. But as I'll explain, payment structures and various cultural factors are incentivizing U.S. physicians to provide more intensive and invasive care at end-of-life. And despite having pretty good palliative and hospice access, we under-utilize it. Many of you are probably familiar with this report from 2014 from the institution of medicine titled Dying in America. In noted, it recognizes several encouraging developments in end-of-life care, including the now well-established role of palliative and hospice care, and ongoing research to document the benefits of palliative approach in order to kind of maximize the quality of life for dying patients. But the report concludes that all this improved knowledge has not resulted in improved patient care overall. And a lot of what I'm going to talk about focuses on the translation of abstract knowledge about improved end-of-life care into the actual practice of physicians in caring for dying patients. There's a disconnect between these two things that remains, and it's not easy to bridge the gap. So the IOM report urged overhauling health care at the end-of-life, noting that a lot of its recommendations could be implemented without legislation. Some recommendations, however, like restructuring the Medicare program to pay more for home health services rather than spending so much on acute hospital stays would require legislative amendments to Medicare's implementing statute and regulations. And realistically, making changes to end-of-life laws, especially federal laws like Medicare, can bring on death panel accusations, what we call death panel accusations, which are claims that the U.S. government has a secret panel that decides who gets care and doesn't, and who lives and dies. The IOM, like the Intelligence Economist Unit report, kind of comes to the same conclusion of people who indicate end-of-life care preferences. Most choose care focused on alleviating pain and suffering. However, because the default model of hospital treatment is acute care, advanced planning and medical orders are needed to ensure that those preferences are honored. Health policy experts are trying to have been studying for a long time how to improve the situation, but we still haven't made a lot of progress yet. In fact, the problem appears to be getting worse. One-third of expenses in the last year of life are spent in the final month, and aggressive therapies and technologies in that final month account for about 80% of those costs. About 30% of Medicare dollars go to care for the 5% of Medicare beneficiaries who die each year, and many patients in our system receive aggressive interventions right at the point of death, including CPR, ventilator support, chemotherapy, and even ICU care when death is imminent. At the same time, we underutilize hospice and palliative care, and these trends are also worsening. The most recent data have found that in 2009, 28.4% of patients received hospice care for only three days or fewer. The recommended ideal hospice stay is one to three months at the end of a terminal illness, three days or fewer. That was up from 22.2% nine years earlier. Also, almost 30% of Medicare beneficiaries received care in an ICU during the final month of life. That was up from 24.3% in the earlier studied period. We have a trend of rather short-term hospice utilization for a fair number of patients and undesirable amounts of intensive care for dying patients. Again, most patients say they'd rather die at home, but only about 30% of people do so. At one level, this heavy spending at the end of life is not surprising. It makes sense that many dying individuals will require substantially more medical care at this point in their lives than previously. The really more challenging question is how much of this care is appropriate in the effort to prolong life, and at what point should the focus turn from prolonging life to ensuring a comfortable death? The answer to this question, as with complex questions in general, is it depends. It depends how we're asking the question. There are various ways to assess whether on the whole dying patients are receiving the right amount of therapy or life prolonging care. We could ask whether this treatment objectively improves physical outcomes by prolonging life or improving quality of life. We could ask whether we're spending our healthcare dollars wisely in providing this care. Or we could ask whether the treatment is consistent with the individual patient's wishes. And this last subjective inquiry is most consistent with the ethical value of patient autonomy and the legal mechanism that's meant to guard that value, the law of informed consent. The short answer is that most people, but not all, prefer less invasive or intensive care at the end of their lives. And the problem is that for a variety of reasons, patients aren't receiving or are not understanding the information that they need to choose according to their preferences. So let's take a moment to consider a few examples of public figures who've recently discussed their priorities about how they want their lives to end. I think these examples are kind of telling. I don't know how many of you are familiar with Brittany Maynard. She was a young woman from California who was diagnosed with an incurable brain tumor. She became a public advocate for medically assisted dying when she moved. She and her husband moved from California where it was not legal at the time to Oregon in order to avail herself of medically assisted dying in Oregon and to avoid the suffering associated with the end stages of her illness. Next we have Ezekiel Emanuel. He's an oncologist and bioethicist, well known in the U.S., probably among health policy people in Canada as well. He's conducted a whole lot of research on health policy and end of life law and care. In an article in The Atlantic magazine titled Why I Hope to Die at 75, he stated his desire to live a reasonably long life but to die before the disabilities of old age overwhelm him. He writes that living too long, quote, transforms how people experience us, relate to us, and most important, remember us. We're no longer remembered as vibrant and engaged but as feeble, ineffectual, even pathetic. I beg to differ with that quotation but that's his view. Finally, we have Larry King. You all know Larry King. He's a talk show house now retired. He's now in his early 80s and apparently wants to live forever. In a 2015 New York Times Magazine interview he described the many methods that he takes to stave off aging and he acknowledges that he finds his own death unimaginable. He appeared to be only half joking when he said that he imagines his own funeral at 160 years of age. So these are three very different goals for aging and dying to avoid suffering through shortening, although shortening life, to navigate the narrow gap between premature and too late death, and to live as long as possible no matter what the physical or emotional cost. All three of these individuals share a common desire to exert control over the manner and timing of their deaths, which they're entitled to, at least to a point. And at one level the desire for control is understandable and sometimes even achievable, but autonomous choice really only means something when the individual is making informed decisions, including information about what can't be known or predicted. Okay, so why does the US default to acute care? And I should add also how, if at all, is Canada different here? The US Medicare program, again, our Over 65 program reimburses on a fee-for-service baseness, and this fee-for-service reimbursement is a substantial driver for some of these problems. It encourages overutilization of care by paying physicians more when they provide more tests and treatments, and there's very little in the way of structural checks for what can be demanded and paid for. Our private insurance system for younger people works differently and has more checks, but Medicare is pretty much fee-for-service. At the same time, until very recently, the Medicare program did not reimburse physicians for having advanced care planning discussions with their patients. They now do this, I think, as of February of last year. So the good news is finally that this is happening, that we're paying physicians for advanced care planning discussions, and since about three-quarters of the 2.5 million people who die each year in the US are 65 and over, Medicare is the largest insurer of health care that's provided during the last year of life, and any reforms to the program could have real impact. By contrast, Canada pays for hospital care on a global lump-sum payment basis, which removes the temptation for physicians to order what they perceive to be unnecessary treatments and tests and procedures. Why are physicians ordering in the US unnecessary treatments, tests and procedures? Well, that brings us more to some of these other things on the list. Another major driver behind the overutilization of medical treatments is the technology juggernaut. This basic idea that if we've got it, we may as well try it out and use it when we can. Physicians are mostly still being trained in medical school and in their training in a culture of cure at all costs, and they tend to view a patient's death as a professional failure. But continuing inappropriate or aggressive care also opposes risk of harm to patients, additional pain and discomfort, and often no obvious offsetting benefit. As for the next item on the list, I don't want to opine about Canadians on this topic, but Americans really struggle with an unwillingness to confront their mortality. Both patients and physicians often avoid discussing the inevitability of death and planning for it, and so they miss opportunities to make choices that are consistent with their values and preferences. When these discussions don't happen, our default model is to err on the side of treatment, which often results in over-treatment and avoidable suffering, as we saw in the case study. At least for those patients whose goals of care are focused more on comfort than maximal life extension. And in the context of terminal illness, people often think that more therapeutic care is better, right? It seems logical, and leads to longer life and improved physical well-being. We've all heard people say the doctor did everything he could, she could. Doing everything may help alleviate feelings of helplessness on the part of families and even physicians, but it's not necessarily in the patient's best interest, nor is it necessarily consistent with what the patient would choose if fully informed of their situation and of what they were getting into. We also have concerns in this country about liability. Fear of liability for malpractice or hastening death is very real among U.S. physicians, and physicians will often practice what we call defensive medicine, including deliberate over-treatment at the end of life in order to avoid the prospect of litigation. They may hesitate to initiate conversations about ceasing therapy or withdrawing life-supportive care because they risk-generating conflict. And there is data to back this up. A substantial number of physicians in the U.S. have been accused of, investigated for, and occasionally prosecuted for murder in euthanasia in circumstances where they discontinued life-supportive measures, provided drugs for pain relief, or sedated patients whose suffering they were otherwise not able to control. One study, one survey of palliative care specialists found that over half of the respondents had been accused of euthanasia or murder by a patient, a patient's family member, or a fellow healthcare provider in the previous five years, and 4% of those surveyed had been formally investigated for hastening a patient's death. So there's a real culture or chilling effect from this trend. Recent data in general from the U.S. shows that 7.4% of all physicians had a malpractice claim. Only 1.6% though had a claim leading to payment. In Canada, my sense is, though I haven't been able to ask people this, but my sense is that there's less concern about liability in this area. The Canadian Medical Protective Association provides professional support and a unified payment mechanism for malpractice judgments for physicians when they're sued. And the overall risk of malpractice liability appears to be even lower than it is in the U.S. Amounts of awards have been increasing in recent years, but the actual number of lawsuits filed has remained stable after the 1980s and even decreased recently from 16 per 1,000 members of the CMPA in 2004 to 9.5 per thousand in 2013, which is 850 cases a year. So I'm going to go out on a limb here and say that I don't think physicians are so worried about these sorts of lawsuits in general or in the context of end-of-life care in Canada. Okay, let's talk quickly about advanced directives. Estimates vary in the U.S., but about 25% of U.S. adults have an advanced directive of any kind. Here we're talking about living wills appointing a person as a healthcare proxy. And I'm counting in, although it's not in this 25%, the pulsed paradigm, which are formal medical orders about life-sustaining treatment. These are all good tools to guide physicians and surrogate decision makers in making choices for seriously ill patients that have lost decisional capacity. In many instances, however, doctors are reluctant to implement the patient's wishes as expressed in an advanced directive. If the patient's relatives are protesting and emotional and upset, they are understandably worried about conflict and potential legal liability. By the way, most of our state laws, and we have a different law in all 50 states, they follow trends, but most of our state laws regarding advanced directives insulate physicians from liability if they comply in good faith with the provisions of an advanced directive, but they don't compel that compliance. So physicians don't have to do what the advanced directive says. Not many patients have them in place anyway, and even if the patient has an advanced directive, it might not address the particular question. In addition to these limitations, the fact remains that most end-of-life decisions are made based on conversations between physicians, patients, and families at the time of the serious illness. And so these conversations become very important as a means to providing care that's consistent with patient preferences. In Canada, you appear to face some but not all of the same issues. About 30% of Canadians have made a living will. More than half have designated a surrogate decision maker. 40-something percent have discussed their end-of-life wishes with family, not many with their physicians. But overall, there seems to be a good forward motion in terms of advanced directive completion in Canada, particularly among residents in long-term care facilities. The final item on the list has to do with communication, poor communication between physicians and patients. This last one is a complex multilayered problem and probably the least susceptible to regulatory intervention to improve it. Because the autonomy principle that underlies informed consent focuses on patients' preferences, the physician can, if he or she chooses, avoid the more complicated discussion of whether continuing treatment serves the patient's best interests. In fact, physicians are rarely called upon to make the actual decision and they're just instead asked to implement the actual decision by patients and proxies, but they don't have the responsibility or authority to make the call with limited exceptions. This, along with fears of liability and reluctance to deprive patients of hope, has created a culture where physicians may hesitate even to raise the question of withdrawing or withholding life-sustaining care. It's difficult to say how much unnecessary care at the end of life results from patient and family requests for it and how much is the result of physician unwillingness to be candid about the likely ineffectiveness of the care in prolonging life or improving quality of life. But there's clearly a causal connection between care that's inconsistent with patient's wishes and poor communication between physicians and patients. So there's good research to suggest that physicians avoid or delay disclosing details about the patient's situation. Again, let's look at some hard data. Physicians tend to overestimate the remaining life expectancies of seriously ill patients and to convey prognosis in overly optimistic terms. In one study evaluating physician predictions of life expectancies, they were correct only 20% of the time and were over-optimistic 63% of the time. The study also found that the closer the doctor-patient relationship, the more over-optimistic the prediction. Now, in a way, this is really nice, right? Because it suggests a closeness and an emotional protection and so forth. But there are real costs in terms of quality of care that result from overestimates of life expectancy, including late referral to hospice care. Over-optimism and prognosis can also increase the likelihood that patients will request aggressive care against their own interests in situations where palliative care would provide more comfort with fewer side effects. Even worse, a surprising number of physicians acknowledged, excuse me, deliberate deception of patients in discussing prognosis, deliberate deception. In a recent study of physicians, one in 10 physicians admitted to lying to a patient in the previous year and over half of those surveyed acknowledged they'd been unreasonably optimistic about prognosis on purpose. Physicians also acknowledged that they're often providing futile or arguably futile care. The definition of futility is too hard to explain right here, but you get the general idea. There was a study that attempted to measure physicians' perceptions of when they were providing futile care and came out with a number of about 20% of the time. The survey instrument defined futility as situations where burdens grossly outweigh benefits. The patient will never survive outside an ICU. The patient is permanently unconscious. The treatment cannot achieve the patient's goals or death is imminent. 20% of the time physicians acknowledged that they were providing this kind of care. So where does the U.S. law of informed consent fit into all of this? While the primary goal dictated by both law and ethical principles is to provide end-of-life care according to the wishes of the individual patients. Patients will differ in their goals of care. Some, like Brittany Maynard, for example, might prefer maximum symptom relief and avoiding suffering at the end of life. And others, like Larry King, might prefer to attempt to extend life as long as possible, even if it means adverse effects from treatments and life-sustaining technologies. The law of informed consent in Canada is quite similar to... and both of our laws clearly include end-of-life decision-making within the realm of medical decisions requiring informed consent. So in ideal circumstances, patients can provide information about their preferences directly, but if the patient's lost decisional capacity, physicians have to try to figure out what the patient would want based on advanced directives and conversations with family. And under this approach, the idea is to preserve the patient's autonomy even when they can't articulate a preference. But in reality, the process doesn't work well because patients frequently haven't... are reluctant to talk about their wishes about end-of-life care or even to acknowledge to themselves or their families that they're dying. And remember that if physicians haven't actually disclosed these facts, the patients are in an even greater state of ignorance than the self-imposed denial of their situations. In general informed consent requires discussion of risk benefits and alternatives to the proposed medical intervention, including the option of doing nothing There are some differences, some technical differences between our respective rules for scope of disclosure, but the general concept applies both in the U.S. and Canada. So informed consent really is only as good as the quality of the information that's being given, and decisions about end-of-life care are particularly complex when you try to put them through the informed consent model. So for example, explaining to a patient the risk benefits and alternatives of a cardiac catheterization procedure would involve a focus almost exclusively on medical risks and benefits and alternative treatments. But an informed consent discussion about whether to sign a do-not-resuscitate order or to begin artificial nutrition is more complex. I mean, it's true, sure, that CPR and feeding tubes have medical risks and benefits, but in order for the decision to be truly informed, the physician should also discuss the probability of a good outcome and the broader contextual risks in some cases involving the dying process with little upside benefit to the patient. This in turn requires the physician and the patient or the surrogate to acknowledge that the patient's dying. This can be a very emotional conversation, but simply asking the patient, if your heart stops, do you want us to attempt to restart it if not sign here? It really does a disservice to the patient in these circumstances. It might technically satisfy legal informed consent requirements, but it's not good. And these conversations are even more difficult for the patient's lost capacity because they require also a broader contextual discussion of the role of the surrogate, which is to make choices based on what the patient would choose if she were able to do so. And when a dying patient hasn't expressed any preferences about end-of-life technology and has lost decisional capacity and the decision defaults to the proxy or family member who may, for various understandable reasons, hesitate to refuse proffered life-prolonging care. The burden on surrogates is very heavy. They don't want to be the person who makes the call and prematurely ends the life of somebody that they care about or they're not yet ready to accept the loss. And so they might end up providing what looks like facially valid consent based on a misplaced understanding of what's in the patient's best interests rather than on what the patient would actually choose. So the operation of the usual consent process in the U.S. means that for some patients who do not clearly opt out of end-of-life prolonging treatment before losing decisional capacity, the path of least resistance can lead to decisions in favor of initiating or continuing life-prolonging care. Again, even in the case study, we saw that the gentleman had opted out. He still ended up getting care that he had verbally refused. So our courts have also endorsed this default path by ruling in favor of continuing life-prolonging care in cases of uncertainty about the patient's preferences. Physicians can, of course, simply decline to provide this sort of care when they think it's clinically inappropriate, but in the current reality of end-of-life care, all those factors I mentioned, that makes it hard to do. So this state of affairs that we've seen often results in over-utilization of care beyond what the patient would choose at the end of life may seem to follow from the autonomy principle, but in fact, it results from a sort of stunted or overly mechanistic view of the physician's role in guiding end-of-life decision-making. In that respect, at least with respect to surrogate decision-making, my sense is that Canada does better. Canada has a more well-developed process for supporting surrogate decision-makers, what you call substitute decision-makers, and for testing the wisdom and accuracy of their decisions. First, there can be, there's a process for challenging a finding of incapacity in Canada through the Consent and Capacity Board. The patient can appeal the finding of incapacity. And also, the substitute judgment, the substitute decision-maker has to, as in the U.S., decide based on what the patient would choose, if known, and otherwise based on the patient's best interests. But if a healthcare provider is worried that the substitute decision-maker isn't deciding according to the patient's preferences or best interests, Canada has an appeals procedure, again, through the Consent and Capacity Board, that can result in the Board making the decision and the substitute decision-maker. I understand that this can be kind of fraught, but it's a structural support mechanism that just doesn't exist in the U.S. The only way we can have a similar sort of appeal is to go directly to court. And we also have no unified definition of capacity in the first place. So, what can we do about this? Well, here are the basic solutions that have been proposed. We can implement mechanisms that push from the outside, that incentivize physicians to communicate with patients, and that discourage the provision of unnecessary care by, again, reimbursing healthcare providers for advanced care planning discussions, rewarding good outcomes, objective measures of whether patient care complies with standards for good palliative care, reconfiguring payment mechanisms, very difficult to do in the U.S., but theoretically possible, and providing more training in palliative care and communication skills, which is starting to happen. But some of these steps are difficult to implement for U.S. patients who haven't yet reached Medicare eligibility aid, and even within Medicare, there'll be serious political pushback from those who believe that the agency that runs it has convened death panels. The death panels lie is still being repeated on a regular basis by conservative politicians in the U.S. and a Republican representative in the House just two weeks ago introduced a bill to remove the provision from the Medicare statute that authorizes payment to physicians for advanced care planning discussions with their patient. In the name of the bill, it's called the Protecting Life Until Natural Death Act, and it's now under consideration in our House of Representatives. So with respect to political pushback of this nature, again, I think you Canadians have it easier. There's a growing body of evidence that demonstrates that an emphasis on palliative care rather than aggressive therapy can improve patients' quality of life and even prolong survival or at least not shorten life. In a study of over 600 patients with advanced cancer, those patients who had end-of-life planning discussions with their physicians spent significantly less in health care costs in the final week of life and had less psychological and physical distress than those that didn't have these conversations. Survival times between the two groups were the same on average, but higher health care spending was associated with poorer quality of life in the non-discussing group in the last few weeks before death. The communication between patients and physicians is associated with better outcomes. Recent studies document that most patients do want to discuss end-of-life options and that they rely on their physicians to initiate these conversations, not happening much in the US. But we also need to remember, and I want to be clear about this here, some patients simply don't want to participate in these sorts of discussions in more than a minimal way, and we have to respect that position because we really don't want to go there. I place myself in your hands, doctor, but I don't really want to know a lot of detail. This discussion that we're having, I'm focusing more on patients who want to make informed choices and how the system can best maximize the opportunity for them to do so. One positive development in the US and I also gather in Canada is what we call the PULST program and what you call most medical orders for scope of treatment, states that have implemented physician orders or encouraged the use of these forms have at least created a built-in requirement where the discussions have to occur and where patients and physicians or surrogate decision-makers can make some basic choices for critically ill, terminally ill patients about life-sustaining treatments like ventilator use, feeding tubes, and so forth. At this point, the implementation of PULST is really uneven, it's not even going, it's going in some states and not in others, we don't have much data yet, to tell whether it will make a meaningful difference to the problems that I'm talking about but it shows real promise. Physicians may worry that discussing these matters with patients will generate anxiety or give the patient the idea that the physicians abandoning care. There's substantial literature now on best practices and end-of-life communication and good resources to assist physicians in learning how to have these conversations and research shows no evidence of depression or anxiety among patients who have these talks with their physicians. They can help patients make more informed choices about whether and how to proceed with treatment versus focusing on palliation of symptoms. The American Society of Clinical Oncology is one of many groups that has created a checklist of information to be included in these conversations and I won't go through the list right now but it's a good list of talking points but again, the research suggests that these conversations don't happen as frequently or as soon as they're needed sometimes they don't happen at all. So there are real downsides to not clarifying goals of care with patients at the end of life at least talking with them about what their situation is and what's most important to them. So as I've said under a lot of circumstances if a patient or surrogate decision maker requests continuing care or life-prolonging interventions the physician can simply acquiesce. But where are the requested intervention is arguably not in the patient's best interest, mere acquiescence doesn't serve the patient well. The physician is responsible for the patient's well-being and so he or she can while acknowledging that the decision remains with the patient I think has an ethical obligation to opine about what is in the patient's best medical interest and to discuss this opinion in the context of the patient's wishes something along the lines of the shared decision-making model. It's not easy starting these discussions occur often at the point of decision like I said in my emotional discussions but the shared decision-making model encourages a two-way conversation in which patients share their values physicians share their medical options and expertise and recommendations based on the patient's values and they kind of reach an agreement about what to do more by consensus instead of a two-step process where the physician says I can offer you this here are the risks and benefits and the patient just says yes or no in complex medical decisions so even if we agree that good end-of-life decisions are decisions that reflect patients' values and preferences after a series of discussions with physicians to explain options and their potential risks and benefits and adverse effects and even if physicians and patients are willing to have these conversations together there are still barriers to good decisions that remain in play in addition to all of the emotional challenges decisions about whether and when to cease curative care and whether to begin or withdraw life-prolonging technology are inherently complex as a scientific matter physicians and patients want to make the best choices about medical care but they obviously lack the knowledge to know what's going to happen in advance and it's also important to avoid shortcuts in these conversations so for example statistical life expectancy based on past experience with similar populations gives us a snapshot of population trends but it's really difficult in most cases to assess their relevance with respect to any particular patient's situation there's no way to usually no way to predict whether a particular patient will on the one hand outlive the statistical production for life expectancy or on the other hand die much sooner so I don't want to give the impression that I'm expecting physicians to be super prognosticators, quite the opposite and these conversations are not simply about prognosis physicians also have to realize that patients frequently fail to understand the likely curative value of certain invasive treatments either because the information is not provided up front or it's just impossible to predict with any accuracy what's going to happen and there is an interesting study on this one as well with respect to chemotherapy for metastatic cancer one study found that 69% of patients with lung cancer and 81% of patients with colorectal cancer mistakenly believed that the palliative chemo that they were receiving could cure them and the problem with this unrealistic expectation of cure optimism is good, but the problem with this is that patients are going to be more likely to consent to treatment that while it may palliate their symptoms or maybe even extend their lives it's also going to cause significant toxic effects that will impair quality of life so patients who understand that chemotherapy under these circumstances can't cure their illness will best have a palliative effect they may weigh the value of this treatment differently and may be more likely to decline it this kind of conversation between physician and patient that's needed to evaluate the patient's level of understanding is going to be just as challenging as the prognosis conversation so it's impossible to eliminate clinical uncertainty but I think physicians can provide more guidance and more accurate information about the relative merits of different options for individual patients than what they're typically doing now so I want to be realistic here I know we already asked a lot of physicians so this last part that I'm going to say before I end is highly aspirational but I'm going to say it anyway all of this talk of reforms from the outside is only going to get us so far given the external pressures on physicians at least in our system to default to acute care and given the other cultural challenges the real impetus for improved communication has to come from the inside of physicians and patients and families being more open to these sorts of discussions even then there's a deeper layer of philosophical and cognitive challenge that may continue to undermine physicians' willingness to communicate superficially we have lack of training personality issues patient and family resistance those are all posing big obstacles to open communication more deeply there's an additional layer of uncertainty beyond clinical uncertainty that's probably influencing physicians' willingness to deal with these things with their patients in addition to the known unknowns about prognosis or likely curative value they're also the unknown unknown variables the lurking realization that we don't even know about all the things that we don't know about if you know what I mean and this concept which actually has a name 90 and uncertainty comes from economics but it applies I think kind of nicely in this setting and it complicates an already deeply challenging series of conversations between physician and patient so in the context of medical decision making this form of uncertainty is not only humanly unavoidable it's not a flaw it just is but the degree of uncertainty and its impact on patient outcomes is also unknowable so even the most competent, skilled, communicative conscientious physicians judgment can be 100% incorrect not wrong but incorrect about a particular patient's prognosis or response to treatment due to these unknown unknowns and I think accepting uncertainty about prognosis or potential efficacy will be easier for patients whose physicians acknowledge that it exists and that uncertainty is inherent and unavoidable in virtually all complex medical decisions and physicians themselves by the very nature of what they do every day know this right they live with uncertainty and I think sharing this reality with their patients is more likely to bring physicians and patients together in a collaborative decision making process than to leave patients feeling hopeless or abandoned so physicians could acknowledge to their patients that they are neither omnipotent they can't cure everything nor omniscient they can't predict outcomes accurately and I'm not suggesting that physicians think they're God I just think the cartoon kind of fits the best of these difficult conversations will acknowledge these points and follow a model where the physician gives the best available evidence-based information in an honest fashion without hitting the patient over the head with it in an honest fashion and recommendations on that basis and then ask the patient about what they value but then rather than dumping the ultimate decision in the patient's lap the physician could make a recommendation based on their experience and explain the reasons for it to the patient this is much more than what informed consent requires in either of our countries but it's what I think we should be shooting for thank you and I'll just say preemptively that if you're in the back so if you would shout your questions loudly that would be good but I welcome your questions that you started with I'm wondering if you'd be able to give an illustration of how an improved consent process that you described to address some of the issues that were present in that case because it strikes me as a really complex case that we often see the connection between some of those problems and the solution that's a good question because there are so many moving parts in what happened in that case there's things that I didn't even mention like the fact that one physician will rotate on the shift and another one off shift and whoever had that first conversation with the patient when he was diagnosed where the patient said I don't want any treatment or tests might not be the same one that's there the next day and so forth but what I envision is that there are and there are proposals to do this and some hospitals are doing this and there are a lot of teams of people who keep track of these things and so basically within the patient's file the patient's wishes are documented in the medical record and they're documented on the basis of a conversation between whatever doctor it is who's responsible for providing this diagnostic information to the patient I think in the case he was there initially with his son and that there is this sort of conversation up front where not only where the patient says I don't want any tests or treatment I watched my wife die this way I don't want this but where the physician acknowledges this talks with the patient a little bit about sort of testing the boundaries of what they're refusing and then sticks to it and this is not what happened here how is he 21 days in the hospital when he said no tests or treatment and he was persuaded first to have the biopsy and then to have all these sorts of other things once the patient says no we need to have a conversation about palliation of symptoms and that's just not happening because of things that are the other factors that I mentioned that are outside the bounds of conversation but the conversation part is listening documenting and respecting what the patient said and making sure the patient really understands the implications of what they're refusing the solution that you make advanced directives bind it so it's just as if I refuse and I'm capable and if you treat me that's battery so say the same with an advanced directive that you make and we have a case law that says an advanced request must be refused otherwise the doctor will be in trouble but I was struck by you said the US Laws don't compel compliance so how about that as a solution well if we could add the solution but I can tell you we'll never be able to get rid of the conscience clause exception so whenever a physician says I just can't bring myself to an advanced directive they'll still be able to get out and transfer the care of the patient to another person to another physician but apart from the people who are opting out on the basis of conscience I actually think it would work it's just politically impractical to have that sort of thing passed we have the 50 states different laws on advanced directives and I didn't mention but some states for example the state law in front does not allow people via advanced directive to refuse artificial nutrition and hydration so you can put it in your advanced directive saying if I become permanently unconscious or half dead in an accident or whatever I don't want a feeding tube the state law says it doesn't count so given that culture I mean I think it's a nice idea but I think it's politically unfeasible and we would still need to keep the conscience clause so other questions how would you get around the habit and most of the medicine that if you have a horrible debilitating illness your advanced directive is out of respect until you go unconscious and then it's game game will do everything that would normally do in the normal scope of practice to you because you can no longer be sent how do you get around that so that when you say I do not want treatment unconscious for x number of days say 5 days then at day 6 well now technically the letter of your advanced directive is null from day 6 how do you avoid an advanced directive to stop that well it sounds like in Canada you can write it and it has to be and this confirms what I've read it has to be respected and as long as it's there the people know it exists and that they can read it that's the other problem we have with advanced directives in the US they get buried in some lawyer's file nobody knows they even exist and so they're not much good in the US the problem with that is just the lack of respect that's often accorded to advanced directives and I mean that comes from multiple dimensions I think partly if you're saying no more care after 5 days of unconsciousness the physicians are going to turn to your family members and say 5 days is too short we have no way yet of knowing whether there's a possibility for improvement it's got to be longer than that and once your family member says oh ok 5 days is too short we need to give it a little more time you're on the slippery slope to be frank so should we follow our ADs with our family doctor our people come family more who's hatched your regular GP should definitely have a copy of anything that you've done in the way of advanced care planning and actually should be the person to have this conversation with you in the first place although it's typically done in the US also in combination with doing your regular will attorneys will say at the same time would you like to do would you like to appoint a healthcare proxy would you like to leave instructions that kind of thing so it's important to give copies of this to all the key people that you see on a regular basis to the person that you think is likely to be making medical decisions for you if you lose capacity that person should have a copy and should be able to point to it and say she said 5 days and even if they're then disagreeing that maybe that was not the best judgment call as a medical matter they should give it a little bit more time that person can still sit there 2 weeks after and say 5 days now we've had 3 weeks that's my wife would not want in many cases that will be respected I don't want to paint such a bad picture but in many cases that will be respected but there's the separate incentive once you're in the hospital to kind of keep you there for a while because of payment incentives frankly and because of concerns about imagine in your scenario some other family member comes along and says oh no no I totally disagree that's wrong that's not what she meant or that was a long time ago but in this system if you have 2 family members in disagreement about whether to comply with the directive or not I can tell you right away the physicians and the hospital the risk management people at the hospital are going to say oh we better just hold off here and keep doing what we're doing what do you do if your person's been dealing with a diagnosis of Alzheimer's of which you can't really tell exactly how your illness is going to progress or what you're going to manage months and days of life will be saved as many as I am now thinking forward I would find certain medical interventions unacceptable so I write up my advance directive and say when I get to this point do not treat me but I get to that point maybe 15 years later and I have advanced dementia no capacity to legally give consent that's a hot lead that's a hot lead that's a hot lead in the context of progressive dementia that's a hot lead debated topic in the US end here it's a big part subject of conversation whether certain aspects of those advance directives like saying I decline help with feeding is a big one whether those can be enforced and I don't have a simple answer to you it's something that really troubles I think people who think carefully about medical ethics when they see their person in that situation you can make the advance directive you can try to memorialize it and update it and everything but I'm not sure there's a simple answer to that one is there anything that you could ever put together as a legal reticent meeting where I'm now at this age and implementing capacity I decided that was kind of separate treatment and then had it normalized or something well and again my sense in Canada is that there's really no limit to what you can put down that you want to refuse it's a little more complicated in the US but once you lack capacity getting it enforced is really dependent on the realities of your legal system and your cultural system and there I can really only talk more about the US and say that I think it's difficult sometimes to have your advance directive respected for a variety of reasons yes Sheila I have a couple questions let's start with one on shared decision making so we've expressed a lot of support for the concept of shared decision making and what I've heard you describe sounded very attractive in terms of entering into a dialogue physician, patient and also the physician being upfront about what they recommend in terms of the various options and that all makes perfect sense to me but there was one further step that you took when you first introduced it you ended off by saying and then reached consensus that shared decision making at least in this idealist model ends in reaching a kind of consensus but that to my mind suggests that the physician has a veto which has always been my concern about shared decision making that it sounds good up to a point but it ignores the kind of power differential that's in play both around differential access to knowledge and professional status and it's when I shift the lens to other treatment decision making context where for instance a physician is recommending a treatment that the person is resisting for one reason or another that maybe they haven't quite articulated shared decision making starts to seem more dangerous to me so I just wanted to see what your three thoughts are on that I certainly didn't mean to suggest that the physician has a veto power if the patient has capacity to work the surrogate the substitute decision maker is doing their job then the physician does not have a veto power in either of our systems when you're talking about refusal of proffered care although there's the separate flip side question of when a patient or surrogate is requesting care that is really crazy then the physician does have a crazy being technical term no like futile in a really verifiable scientific way that makes no sense and the physician doesn't have a veto power but no I didn't mean to suggest at the end that the physician can then veto after having this conversation so I shouldn't have said consensus it's more that I think this whole idea of sort of sharing the patient saying okay here's what I'm shooting for and the physician saying here's what can be realistically achieved based on what you're shooting for here are some options let's talk through this one and this one within the limits of my prognostic abilities and then let the patient choose but as a sort of a two-way conversation I didn't mean to suggest that the physician could then say I disagree with you after all this yeah yes my name is Roxanne Walsh I'm a planner and I'm on a mission to let everybody know if it's legal and no disclosure for family staff to their own funeral director but maybe everybody knows my question is that if people go to the level of filling out their personal directives here in Canada and you say this is the best country between the two that we're talking about to have that in place that it will be honored and recognized what kind of I'm not a lawyer but what kind of protection does a Canadian have if they're a smilver they're down in Florida for the winter and if they're still directed in Canada they're going to be able to have any ways of all of the United States yes and no definitely bring it with you when you're a snowbird to Florida it okay and here it's really hard to generalize some of our U.S. states have the equivalent of like a full faith and credit clause that basically says an advanced directive enacted in another state will respect it here other states know and they cut out certain things that you can't refuse and you know they have a higher standard of proof and all sorts of other things so I would say that it's very valuable to bring the advanced directive with you and to have it available if a situation arises where a person loses capacity and you know in most cases thank goodness we don't end up in court right it's really a matter of you know looking for sources of guidance when the patient has lost capacity and I think most doctors will look at the directive and they'll say okay it was made in Canada and not in Florida but I see that the patient has clearly stated they do want this they don't want that and we're going to you know take that on to advisement it whether it would actually be binding if you want to a court hearing probably not but having said that there's good evidence from past disputes about end-of-life care that the Florida courts will look at that directive with respect as well and taken it might not be technically binding but they'll take it under advisement and consider it very seriously but this varies you know but from court to court from state to state what you can count on in that way Elaine. Thanks so much Barbara I just thought that I might clarify for the Canadian members of the audience the law in Canada about advanced directives as you've been intimating in any province in Canada that has advanced directive legislation it is binding on the health care facility and the physician to respect what is laid out in the advanced directive so long as it's been executed in accordance with the statutory provision and so long as the particular topic being addressed has been covered in the advanced directive and if the facility or position does not respect the advanced directive that has been brought to their attention then there are a few routes of a few avenues that could be pursued and one is there may be within the statute itself a provision that talks about if the statute has been violated what then would happen there would also be the possibility of a complaint if it's a position and a complaint to the College of Physicians and Surgeons and thirdly as you mentioned there would be the route of civil liability and so this would be an action might even be brought in small claims court for battery which most people would know of as assault yeah and it's thank you for adding that in I mean in that sense it's very similar in the US I mean we have case decisions where a physician has provided treatment to the patients expressed wishes and then you know the patient dies and the family soothes for battery and so those cases do occur and there are the whether we're talking about enforcing an advanced directive or just enforcing patients wishes stated orally which are treated like an advanced directive in every state you can just say what you want and what you don't want and it has the force of law and theory so we have the same scenario where you can bring a claim for unwanted treatment that's been provided it's just in our system it's pretty rare it's really the flip side scenario that gets litigated and prosecuted and so forth which is where family members are really upset and overwrought and they feel like the way things are ending where care is being scaled back or stopped is hastening death so that is the bigger problem in the US but in that sense no we're completely consistent on that view and the only other thing that I was trying to make clear is that we don't compel compliance with advanced directives in any of our states that I'm aware of positions mostly will respect them but sometimes not and then you have to go to court if you really want to enforce it if you can't come to some sort of agreement through ethics consultation or some other sort of process that's short of court but I think that overall we have less of a good enforcement mechanism than the Canadians do and I still have read some evidence of people, healthcare providers in Canada resisting complying with advanced directives in certain cases so I know that there's something of an issue here but I don't think nearly as much as what we're facing I think there's also a real problem in Canada and it sounds like also in the United States around education of substitute or surrogate decision makers as to what their duties are so for instance here there may well be law enforcement here in Canada that prioritized complying with prior capable wages and then moved to respecting the values of the person and only then going on to some kind of whatever it is objective but I don't think people typically number one even know this and number two are sort of encouraged to then reflect on what it needs and that's the speculation in part but there's two parts to what I wanted to ask you is whether in your research you've seen much by the way of good models pushing for the kind of cultural shift that you're talking about the proactive sort of moves as opposed to the reactive how can you see a person after that so either in the way of medical education I don't know if that would be humanities based education or what it would be that would kind of encourage a more reflective approach to you know talking about mortality and death and all these broader issues than just the biological mechanics but also have you seen any good sort of policy programming around education for families including say substitute decision makers around those very you know difficult Well first let me confirm your impression that physicians don't know much about substituted decision making it's even less and you know there's some variation in what physicians are taught in medical school I used to teach in a program in a class in a medical school program and the course was called something like legal and ethical issues in the practice of medicine and we spent just a couple of hours on the concept of autonomy versus best interest substituted decision making the intersection with informed consent it was like a tiny little blip on the landscape of their medical education so I wouldn't be surprised at all if it doesn't make a deep impression and families also you know when from what I've seen in person in doing ethics consultation and just talking with families they often think their job is to advocate for the patient by keeping the patient alive like they feel like it's their job and I mean it's and they don't understand necessarily that their actual job is to speak for what the patient would want if they were able to speak on their own behalf and are there good programs to educate families about that? No because it I guess the best process is really ethics consultation when it comes to that and I've done a few ethics consults where we've sat down with families and basically said what would your husband want in these circumstances your job is to speak for him he can't speak anymore you know and so what do you think he would say right now about this and then if the person says well I just don't know then we have to start talking about whether you know what's in the best interest which itself is really complicated so that's why I was saying that like with surrogate decision making there's that whole extra layer of context of explaining to the surrogate what their goals are and I don't know of any very good programs to educate families so much there are good programs to educate physicians through continuing medical education there are all sorts of courses and videos and so forth whether they're having much effect yet I don't know I mean I know I've given talks like this in CME settings and physicians seem very receptive to this idea of communicating more and so forth but whether it translates into changes on the ground the statistics don't suggest that it's not really happening yet so I don't know how to fix that it's sort of I have sort of a pessimistic conclusion about all of this because I just think the informed consent law only goes so far and then there's not a lot that we can do until individuals want to do it I was just going to make a point when I consult with clients about their end of life plans and this comes up and I try to put them on to a professional they can you know make that a legal document for them but one of the things that I encourage them to consider is to write a letter that says something to the effect of thank you for following my decision you didn't kill me you followed on my plan and I'm grateful for that to alleviate any kind of guilt or concern or whatever about pulling the flag yeah and I think that's really good advice and similarly you know when I'm talking with law students about doing healthcare proxy appointments on behalf of their clients I tell them you know tell your clients when they appoint somebody as their proxy first ask them are they willing to be your proxy decision maker your substitute decision maker whether you formally appoint them or not and then do them the favor of talking with them about what your concerns are and what your wishes are don't leave them in the dark and you know have a conversation along the lines of what you're suggesting in the letter and not only say thank you for standing up for me and I want you to do this but here's here's what I'm thinking so that you're not leaving them sort of groping around in the dark but again this is aspirational it doesn't happen that often I'd like to just tell you about the next health law seminar and it's the last of this season it's coming up it's Friday March 24th and the dean of the law school Camille Cameron will be speaking her title is litigation as regulation a tobacco class action case study so I want to thank Barbara Noah for coming speaking to us today and encouraging us to think more and to be born and reflect more about the end of life care decision maker. Thanks a lot.