 I'm delighted to welcome you to today's session in ethical issues and end of life care. As many of you know, but if you don't, I'll tell you now, today's session will be the last lecture we have in the fall quarter. We will break until January 7th when Dr. Tracy Coogler will be speaking to us. Tracy is from the University of Chicago here. I'm delighted to welcome today's speaker, an old friend of mine, Dr. Timothy Quill. Tim is a professor of medicine, psychiatry, and medical humanities at the University of Rochester School of Medicine. He's also the director of the Center for Ethics, Humanities, and Palliative Care, and a board-certified palliative care consultant. Tim Quill has published and lectured widely on many aspects of the doctor-patient relationship with a particular focus on end of life decision making, a focus that has included looking at delivering bad news, non-abandonment, discussing palliative care options, and exploring last resort options. Tim is the author of several books on end of life, including Physician Assisted Dying, The Case for Palliative Care and Patient Choice, and another book called Caring for Patients at the End of Life, Facing an Uncertain Future Together. He's written widely in the peer-reviewed public literature, including a well-known paper called Death and Dignity, A Case of Individualized Decision Making in the New England Journal. Dr. Quill was the lead physician plaintiff in the New York State legal case that challenged the law prohibiting some end of life decisions, a case that was heard in 1997 by the U.S. Supreme Court Quill V. Vacco. Tim is a fellow of the American College of Physicians, a founding board member of the American Academy of Hospice and Palliative Medicine, and today Dr. Quill will speak to us on the topic sedation, consciousness, and personhood, clinical and ethical perspectives in a palliative setting. Please join me in welcoming Tim Quill. Thank you. It's a pleasure to be here to talk about the subjects, a little bit daunting to be here in the presence of people who have given this kind of subject a lot of thought. So I'm hopeful that what I present will generate some good discussion, maybe even some give and take on these subjects, because these subjects are not that easy to understand and fully come to grips with, so hopefully you can hear my perspective on it and then we can have an exchange about where this all goes and what it means. So I have no significant financial conflicts of interest. I am a past board member of Death with Dignity National Center, and I have been an advocate for allowing physicians this death as the last resort option, so that sort of tells you something about who I am and the perspective that I bring to this particular question. So I'd like to start with these pictures. These are photographs by Imogene Cunningham about people who are alive and functioning into their 90s, and again we see more and more of these patients. The average lifespan of women now in this country is probably getting toward the mid-80s, low to mid-80s. Men, it's just about crack, the 80 years. And that's just the average lifespan. And the hope was that people would live healthy a lot longer, they would live sick perhaps a little shorter and they would die peacefully, it's called the compression of morbidity theory. What's happened is that people are living healthy a little bit longer, they're living sick a lot longer, and at the end of sick they are often faced with very, very tough medical questions and issues. So we are all very involved, particularly in palliative care to some degree in ethics with these folks trying to figure out what to do at the end of these adventures. But the gold standard of end-of-life care still remains hospice care. Anybody recognize this lady? This is an aging group. Kubler-Ross, the mother of the hospice movement, did this radical thing around 1970. She actually talked with and listened to people who were dying, and she learned they had a lot to say, they had a lot of feelings, huh? Here, yes, here. Here. Remember this. She did this on-death and dying book which had these stages you go through, and her stages probably weren't sequential stages, but she really did give voice to the fact that people who are potentially dying have a lot to say, a lot on their mind, and if we can get the courage to join with them in that conversation, we can learn a lot. And the hospice movement sort of emerged when I was coming out of medical school. It was just starting the hospice movement. I love this picture to characterize hospice because I don't see this man as doing a lot of deep death talk, and he's a guy. But he might be able to give away his tool collection, and that process of giving away his tools will be something that he and his grandchildren will forever remember. So there is this opportunity in hospice to have this meaningful time if we could come to grips with the fact that that's where we are in life's cycle. There's also a medical side to hospice. If you're going to go through this process, you better have people who know what they're doing, because if you don't have people working with you and know how to manage pain and shortness of breath and nausea and vomiting and so on, your time is going to be dominated by those symptoms. So when we use our skills in hospice to help people die better, help people die peacefully, we're doing a wonderful thing. And again, I sort of articulate that is that we help people die better in hospice. And I do that partly just to challenge you that we do help people to die. That's what the job is, because we're all going to go there. This is probably more than you want to hear right now. But we are all going to go there someday. And we might want to think about how we as individuals want to go there. How do we want to be? What do we want to have happen at the very end of that process? Now the other side of this is that we have a health care system that's in a lot of tumult. I will tell you if you have not had access to health care, if you're poor or black and you're just getting into the system and you're really sick by the time you get in, you're not that interested in hospice or palliative care for that matter. You're interested in getting more health care. And when health care people tell you that there's not much more they can do, you don't believe them because by and large you just think they're withholding once again from you. So again, there's a lot of complexity. And there's also, if we are going to say that we're going to address these tough symptoms, we better be ready when people come in with tough symptoms. So this guy might be coming into our emergency room. He might have really advanced chronic lung disease, might have lung cancer. If we have not thought through how we're going to deal with severe shortness of breath, this man's going to get intubated every time. Because being intubated, being put on a breathing machine is better than severe untreated shortness of breath. So we have a lot of work to do to kind of get our systems prepared to deal with what they're going to have to deal with. And of course, if we haven't dealt with it, we try intubation in uncertain circumstances. And now this man is a couple of months down the road. He's now stuck on a ventilator. He's got some tough decisions ahead. Do I want to keep living like this? Do I want to go off the ventilator with the knowledge that I'm highly likely to die? How do I prepare for that? So there are a lot of palliative care and ethical conundrums that come from our successes in medicine. There's also a part of caring for people who are really sick and dying that is really hard. When we're not used to as a culture of being around people who are this sick, we shift them off to the hospital, maybe to the nursing home. The number of people who die in their own homes is shrinking. So as a culture, we don't have a lot of comfort with that. And just being with people is certainly challenging. So now I'm going to shift gears a little bit to say why are the, why did, what about these last resort options? Which palliative sedation would be one of the last resort options? Why are they important? Why do people care so much about them? Why do we debate so much about them? Well, one, it's reassurance for those who have seen a bad death. So how many of you have seen a bad death in your careers? Okay, one bad death affects a lot of people, right? Because once you've seen that, you think, oh God, if I go there, what options would I have? What would I do? What would my family do? So those who have witnessed a bad death can be reassured if we have an approach to that. And also, out of those who need reassurance, a relatively small number will actually get to positions where they might actually need that kind of an escape. But if they do get there, they better be able to count on us if we've committed that we're going to address those issues. So awareness of potential options is important to some patients, families, and caregivers. And I would say it's particularly those who have witnessed harsh death in their personal life or in their careers. Now sometimes when people are dying badly, it's because they're not getting adequate palliative care. So palliative care is the floor in this. So again, we still have limited access to care. It's gotten a little better maybe with Obamacare, but we still have a long way to go. We still, how many are physicians in the room? Okay, how many of you were trained in palliative care during your training? That is not a good sign. Okay, no, did any hands go up? A couple went up. So it's probably less than 5% of the physicians in here have had training in palliative care in their training. Pretty shocking, right? So that's something we are in the process of trying to change nationally and certainly locally needs to happen. There are barriers to pain management that are substantial. Pain management has gotten a lot more complex recently as we've seen the effects of overprescribing as well as the effects of underprescribing. A reimbursement disincentives. So again, if I see a patient in the ICU who has tubes coming out of every part of their body, as long as we keep doing that, everybody tending every tube is incredibly well paid for the work that they do. If I go in as a palliative care consultant and have a two-hour conversation with the family and we decide to stop treatment, that two-hour conversation, by the way, is not very well compensated. But if we decide to stop every drop of money going to all these people tending tubes, goes away when that happens. So if you're an economic determinist, you're going to say that's going to drive a lot of over-treatment at the end of life. And I believe that still does today, despite changes in health care. Palliative care, when we do offer, tends to be late. And we seem to say it's OK if your doctor is not committed to relieving suffering. It's OK. It's not OK if they're not committed to treating the disease. But it's OK if they're not committed to relieving suffering. So we have some work to do. Because these are all correctable limitations. And we're working hard nationally and hopefully locally to try to correct a lot of these. But there are some limitations of palliative care that are not correctable. So if we tell patients that we can relieve 100% of their suffering, you can promise I can relieve 100% of your suffering, if they've seen these hard deaths that you guys have seen, it's a little scary to have people tell you they have 100% answers. Because what if I'm an exception? So we have to learn how to acknowledge the exceptions. And some of those exceptions are uncontrolled physical symptoms, pain, shortness of breath. Some of them are psychosocial, existential, and spiritual suffering. The notion that we could address and relieve 100% of suffering in those domains is preposterous. And most often it's a mix of physical and psychosocial factors. And then further, the dependency and side effects of some of our treatments to treat the harshest symptoms are unacceptable to some people. So we allow people, if you're on a ventilator, to choose to end their life. We say listen to the patient, but the same patient suffering 100 times more not on a ventilator. We say, boy, there must be something psychologically wrong with them if they're talking about wanting to end their life. So again, we have very different approaches depending on your circumstance. So a little bit of data about symptoms in dying patients. They're very common, and it ain't just pain. So these are just surveys of symptoms of dying patients. And if you take a look at those symptoms on hospice patients, they're a little bit better, but that doesn't go down to zero. So they're interlocking public policy questions. How do we improve access to and delivery of palliative care for all dying patients? That's the floor. And then how do we respond to those infrequent but troubling patients who are dying badly despite excellent care? And then should we respond to these cases individually, privately, or should we try to change public policy so we can respond more out in the open? So these are some of the public policy questions. So two aspects of a clinician that a clinician might be faced with, a patient asking us, what options do I have if my dying becomes unacceptably bad in the future? These questions are relatively common if we are open to them. So a lot of people are curious about this question. So that's a big question. A lot of patients wonder about that. Then a narrow question, what about now if a person later on down the road has unacceptable suffering? What options do I have now? So these are some of the clinical questions you might be faced with. So the first one has to do with the future. Who's gonna be my doctor? If I stop cancer treatment, is my oncologist still gonna care for me? Do I go back to my primary care doctor? Is the palliative care doctor gonna be the one? Cause I will tell you, those who are facing the end of their life really need to know which physician they can count on for this. And it doesn't have to be the same one. We don't have to say as a matter of policy, you always have to go back. But you have to figure out who's gonna be that person, the go-to person. Cause if you have such a person, you're way ahead of the game. And that person ought to explore what people are worried about. This is not rocket science. It's a matter of opening the door to the conversation. What are you most afraid of? What kind of deaths have you seen in your family? What do you hope to accomplish with the time that you have less? Those who know who their doctor is have freedom to worry about other matters. If that doctor can reassure them that they'll be responsive. So again, in terms of the narrow question of physician-assisted death, about 1,000 terminally ill patients, 60% supporting physician-assisted death in theory and 10% were seriously considering it. Second study at Calvary, a Catholic hospice, 92 terminally ill patients, 17% that had a high desire now. Again, a desire for this is not the same as requesting it, is not the same as really activating it. So these are what's on people's mind. In Oregon, since assisted dying has been legalized, one in six talked to their families about it. So it's part of the conversation much more commonly. They're probably then the rest of the country. One in 50 talked to their doctors about it and it accounts for only maybe one in 1,000, one in 500 deaths. So there's a lot of conversation, a lot of give and take around it, but relatively rarely does it get activated in a legal environment. Who asks about assisted dying? Tends to be patients with cancer, neurologic diseases, particularly ALS and AIDS. They tend to be white. They tend to be from Western culture. They are the insured. They are the haves, not the have-nots and most have access to hospice. So they aren't thinking about it as an alternative to hospice. And what motivates them? Illness related experiences, weak, tired, uncomfortable, loss of function. Pain is to some degree a part of it, but more often it's threats to self, a loss of your sense of who you are, a desire for control. These tend to be people who are very interested in control. I know none of you are very interested in control, but in the folks who want this really are. And they have worries about the future, fears about future quality of life and suffering. So it isn't pain. It usually isn't even overwhelming physical immediate suffering for people who are interested in this. So let's say we've had this conversation and we've reassured them that persons will be responsive and now we're in hospice and now down the road we're in that small percentage of people who see themselves as dying badly and they're ready to die now. What can you do now to help me? So the first place to go if that happens is to explore the why now. Why is this coming up now? Why didn't it come up last week or a month ago? What's the most difficult part? What's been tried so far? Tell me what's the worst part about this? And we're gonna go through a very broad look at things that we could potentially relieve or address. And again, if it's pain, again, if somebody wants this, exploring this because their pain's unrelieved, I must say I agree with a huge sigh of relief because I know pain, I can relieve most kinds of pain and I know how I have some last resort options that are fully accepted for dealing with pain. Uncontrolled shortness of breath a little harder, nausea and vomiting that's intractable, a terrible weakness associated with anxiety and depression tougher to simply relieve. So we're gonna, but we're gonna try to address all of these dimensions. If it's a spiritual crisis, we might bring in some clergy from their own faith tradition or one of our chaplains from the hospital. If it's depression or anxiety, we're gonna treat them with biological treatments and talk if that might help. But we're also gonna have to be open to the possibility that this might be uncontrolled intolerable suffering. And again, the more it's physical suffering, the more comfort as doctors we have, the more it's psychosocial and spiritual suffering, I think the more we're on soft ground as physicians trying to think about how to address these issues. So again, we're gonna make sure all palliative care alternatives have been exhausted and then we're gonna search for the least harmful way to respond that respects the values of the major participants. If you are the clinician, main clinician, you are one of those participants. Patient needs to be fully informed and the immediate family needs to fully participate. And this is a list of some of the last resort options. Again, accelerating opioids for pain, I would say wide acceptance that that's permissible in the face of overwhelming pain. So again, if you're gonna work with people at this phase of life, you just have to get over it if you're not comfortable with that. That's I think wide acceptance that that's permissible. Similarly, stopping life supports. People have a right to stop a life support. We need their permission to evade them with life supports. They can withhold that permission at any time. The central zone, a little bit more, I think gray area in terms of consensus about acceptability. Voluntarily stopping eating and drinking would be patients still capable of eating and drinking who chooses to stop eating and drinking because they're ready to die. Again, totally in patients control, but it's a big decision, requires a lot of discipline, particularly to stop drinking, which is the key ingredient. Palliative sedation is what we're gonna talk more about right now, potentially to unconsciousness. And then the options at the bottom are where we disagree the most as a society. There's a lot of controversy on a physician's assisted suicide. Probably we break 50, 50 or 60, 40, depending on how you ask the question whether suicide is a term that you use as asking the question. And voluntary active euthanasia at least in this country would be clearly off the table in terms of permissibility. So what about sedation? So there's three kinds of sedation that probably should be distinguished. I at least distinguish them clearly in my own mind. So usual sedation, meaning might be considered a sleeping pill and somebody who's not sleeping or something to relieve anxiety might have a little sedating side effects. Your intent is not to alter consciousness. Your intent is to relieve anxiety or help somebody to sleep during the night, but your also intent is to keep them awake during the day. So this is not what we're talking about in terms of palliative sedation. What I've called proportionate palliative sedation is what we're usually talking about and this would be gradually increasing sedation to the minimal level needed to relieve the suffering. You're trying to preserve consciousness to the extent possible. So your intent is to relieve the suffering when you're trying to minimize the risk of hastening death. And I think this is common in palliative care practice. I think it's a part of the landscape, something you have to get comfortable with. And then palliative sedation to unconsciousness would be, if you take sedation going, we do sedation scales, 10 totally asleep and unconscious, zero totally awake. Proportionate sedation, you go one, two, four, six. You're trying to stop at the minimal level that will relieve the symptoms. In sedation to unconsciousness, you go from basically zero or starting point to 10. The goal is to make somebody unconscious because their suffering is so overwhelming in the present that that's the only way you can relieve it. And again, I can share with you examples of times where we have used it. It's a very rare thing that we use at our shop. Very important option to have, but it really ought to be not used very often. The intent is to relieve suffering. And your intent around hastening death is probably more complex and we'll probably have some discussion around that as we unbundle this probably on the give and take afterwards. So the key elements of a proportionate palli sedation, and sedation to unconsciousness, usually life supports are withheld when you're doing this in an end of life situation. Again, there are rare circumstances where somebody might be sedated to unconsciousness and you continue food and fluids, but in an end of life situation, I have trouble making sense out of that personally. Now, again, sometimes it's meaningful to patients. Sometimes the family doesn't want the fluids to be stopped. And there are circumstances when we do sedation to unconsciousness and we feed people, but we also put them on ventilators. So think of a burn patient who needs an escape from the pain of their burn for a week. It's not rare for us to sedate them to unconsciousness, but we put them on a ventilator. We provide food and fluids during that time because we're anticipating they're gonna wake up at the end of this and will be able to manage their symptoms and they'll be able to continue to recover. Usually we're using benzodiazepines or barbiturates. The dying process, depending on how sick a person is going into it can take days to weeks. It often depends on the amount of sedation that we're using and the extent of their underlying disease. The patient usually dies of dehydration or some complication that emerges from not breathing very well or having low blood pressure for so long. Patients who are sedated to unconsciousness are unaware of their suffering, but in between you're trying to find the sweet spot where they have enough relief and be alert as possible. So in proportionate sedation you're trying to preserve consciousness but relief is suffering and you're trying to find is there a lesser level? So proportionate sedation might end up going to sedation to unconsciousness but it does so gradually because lesser degrees were ineffective. These kinds of sedation are used in decisionally capable people but sometimes we are also using it in people who have lost the ability to make decisions. So we're using it with consent to the family. An example of this would be a patient who's psychotic and delirious, who's near death. And you say you can't let them be psychotic, you can't reverse, there's no things you can fix to make them better. So then you're trying to get rid of their psychosis and if it's severe you might go rapidly to unconsciousness. In palliative care circles this is widely accepted this practice, both of these practices and in hospice circles. In my opinion maybe a little too readily accepted because the variation in the practice between programs is very large. So some program, like our program the number of cases of palliative care to unconsciousness that occur each year might be zero to two. Proportionate palliative sedation very common, lots of cases. Other programs sedation to unconsciousness accounts to maybe up to 50% of deaths which should sober you. And that is because people are pulling the trigger way too rapidly and way too aggressively. So the moral justification for the sedation. So part of this is the double effect rule. And again double effect, double effect you don't really need for most of palliative care you don't need for pain management. But I do think this is as you're getting more heavily into sedation it is a useful way of thinking about. So your good effect can be intended, the good effect relieving the agitation that's the symptom that's disturbing the patient. The bad effect can be foreseen but not intended so you could see that if I really sedate this person a lot they might develop an ammonia, they might get dehydrated. But that's not my purpose for doing this. The bad effect can't be the means to the good effect so I can't sort of kill the patient to relieve their bad symptom. And then the harm of not acting must be proportionately severe to warrant their risk. So again this isn't for little degrees of agitation or little degrees this is for extreme things it's for rooms that people are walking out or shaking their head we gotta do something. That's the kind of cases that this is warranted for particularly sedation to unconsciousness. The withdrawal and withholding of life sustaining therapy again mostly relevant with sedation to unconsciousness. So if you're unconscious you ain't gonna be eating anymore. If you're proportionately sedating somebody they can take what they can take right? You're gonna still feed them what they can take. But if you're gonna stop the food and fluids and people are sedated to unconsciousness this is justified in a different way. The right to bodily integrity people have the right to say what goes into their body. This would be permissible even if their intent the patient's intent was to hasten death. When you think about combining sedation to unconsciousness and withdrawal of life saying therapy it gets a little more complicated to justify according to double effect. And if the patient has the audacity of suggesting that they want the sedation because they'd like to die sooner it creates some problems with the double effect justification. There may be other ways of justifying it's not the only way of justifying it. And again those who aren't connected to the double effect proportionality ends up being a really important anchor for this practice. So again the effect of reducing consciousness on persons in personhood for most of us consciousness is essential to a quality existence. So again we're trying to preserve it as much as we can. We do have to sometimes make trade-offs but we do so with great caution. The severe suffering in these circumstances is associated sometimes with disintegration the person that's what Eric Cassel I think has captured in his writing and I think it does get at the fundamental disturbing nature of severe suffering. So again in that sense if we're helping people escape from that kind of disintegration this can be viewed as preserving the self or preserving the person which I really do think it does in these circumstances. And the families and patients that I've worked with who we've had to do this it really was a sense of self-preservation was the way we were thinking about it. And witnessing severe suffering like this is fundamentally disturbing. It should be fundamentally disturbing. It should generate a need to try to address this so that sedation and perhaps even death are no longer the enemy but you really have to be careful of counter-transference issues. So the our own feelings, the stuff we bring to the table gets really complex and that's why you really want second opinions you want people who are very experienced if you're thinking about particularly sedation to unconsciousness. So ethical dimensions of reducing consciousness again you're trying to preserve consciousness where possible so in that sense proportionate palliative sedation should be a much better first response for most cases. And agency of the patient should be preserved to the extent possible and not at the cost of unrelieved severe suffering. Severe intractable suffering should be viewed in my opinion as a medical emergency it's a palliative care emergency so it ought to generate a sense that you have to do something. You have to try to respond it. So if you're dealing with that kind of emergency at the start of the day and it's getting to five or six o'clock and you're ready to go home you better have a plan for that next 12 hours cause leaving people on their own for that period of time is not fair. So again thinking about how they should proceed. And again these interventions that permanently alter consciousness or potentially hasten death should only be considered as a last resort. Not impossible but again if we are thinking about them second opinions from palliative care if palliative care isn't available in your shop second opinions from ethics may be both if it's an unclear situation. So that we can keep the process out in the open and we can clearly document and remain clear about what we're doing. So patient choice should clinicians be the ones who decide when suffering is enough? Are patients arbiters of that? Do they both have to agree? These are some of the questions that will come up. Again if clinicians are gonna participate they have to certainly be able to understand the suffering and agree that it must be severe enough. Clearly it should be generated primarily by patients and families. If a patient would have preferred voluntary act of euthanasia but only sedation to unconsciousness is legally available does that invalidate the request? So should we say well you can't have it if you don't tell me that you wanna die just tell me you want your suffering relieved and then I can give you sedation but if you tell me you wanna die then that goes over the top of what I can provide. And again is it only available for unrelieved physical suffering and terminally ill patients or is there more flexibility around choices? These are some of the edge issues that will inevitably come up around these practices. So a couple of recent cases from our shop a 90 year old Holocaust survivor dying of heart failure. Severe delirium as his blood pressure dropped he had nightmares and hallucinations and the nightmares and hallucinations were of the death camp. So he thought in our ICU that he was back in the death camps. He was paranoid and agitated. We tried lesser degrees of sedation and we finally decided this was intolerable suffering. He was dying anyway that sedating him to unconsciousness was justified. So we had a severe delirium with no reversible cause. He had a terminal illness heart failure that was contributing to his delirium lesser degrees of delirium are relatively common in dying patients but severe agitated delirium is clearly a medical emergency and required this kind of response. We needed to get consent from family because he was not able to consent. We also needed to get a second opinion from somebody other than ourselves just to make sure we're on the right place. But this isn't the kind of second opinion that you get the ethics team to come in and have a meeting about and come back in two days to give you an opinion. This is in ethics emergencies and ethics teams do come in in emergency situations and help you out in this circumstance. But we all agreed that this was a good use of sedation to unconsciousness. Okay, 65 year old lung cancer patient with severe shortness of breath. He had been on a ventilator in the past. He was terrified of shortness of breath. He was not now to be intubated. So he was do not intubate. We were committed fully to addressing his shortness of breath if it was severe and it required rapidly increasing doses of opioids and benzodiazepines as death approached. So again, this man needed reassurance that we would be very responsive if he got shortness of breath. So those of you know the dying trajectories of shortness of breath, you kind of fall off a cliff with shortness of breath. So the day or two before you die, you can't tell if people are gonna live for weeks or months or maybe even longer. But once you fall off that cliff, particularly if you're not gonna rescue the patient with intubation, that's a steep cliff. They get symptomatic very fast. So you have to have a plan. This plan was rapidly increasing doses of opioids. It would be aggressive proportionate sedation would be the way I would formulate this. So we would go one, two, four, eight, 10, something like that. And we would stay there until we had the symptoms relieved. Shortness of breath is more terrifying than pain for many patients. And again, mechanical ventilation didn't make sense and was declined by this patient. So he did not wanna go back on a ventilator. He had been on a ventilator before. I didn't want any part of it. So again, this would be a borderland case between aggressive proportionate sedation and terminal sedation, a promise that we would deliver, but then we had to really be ready to deliver when he fell off that cliff. So a tougher case, 48-year-old nurse with a severe intractable depression. He was frequently hospitalized with suicidal ideation. He had tried medications to treat his depression in multiple combinations over the past 10 years. He had tried multiple courses of ECT. He had been institutionalized for three months and he spoke compellingly about his intractable suffering and need for an escape. So this would be severe depression. Does this justify some kind of sedation, terminal sedation? He had intractable suffering clearly despite multiple treatments and therapists. He had no other terminal illness. The challenge was that suicidal ideation was clearly part of his illness. And if we wouldn't help him, there was a significant risk that he would end his life with a violent suicide. But again, we did not offer him sedation or any last resort options. Met with him once a month for two years and he talked about wanting to end his life and didn't end up ending his life. So again, this would be the kind of conundrums that can come up if we open the door to this, a kind of request that may come through the door. So some of the indications for proportionate palliocidation or sedation to unconsciousness in terminally ill patients. So most commonly, and it's most clearly indicated for intractable, refractory, unacceptable physical symptoms. So delirium, probably number one on the list, breathlessness, delirium pain, seizures, bleeding, bowel obstruction with relentless vomiting. Psychic symptoms, if they're present, which they often are if you're in this group, as long as you have the anchor of the physical symptoms, they're part and parcel, but as more it gets to be purely psychic symptoms, the more I think you should be very cautious and not think about this as a reasonable option. You can talk about it, but you're not gonna activate it. So it's more controversial for intractable psychic symptoms, anxiety, depression, existential distress, spiritual distress, and also for intractable chronic conditions that are not necessarily terminal. So chronic, non-terminal medical illnesses. We just had a patient who wanted to, she didn't qualify for sedation, but she had inflammatory bowel disease and had very little bowel left. And she had wanted to stop life-sustaining therapy, so she stopped all her IV fluids after huge evaluations. And by Gali, as soon as she stopped that the diarrhea disappeared and she was able to be sustained on oral stuff. So it was a, so then the question was, well, could we sedate her? Somebody raised that question. The answer was that the indications just weren't there for doing it. So the need for safeguards for any LAS resort option and sedation is certainly one of them to protect the vulnerable from air abuse and coercion, to ensure that they're getting palliative care. Palliative care's gotta be the floor. We gotta balance flexibility and accountability and privacy and oversight. Proportion of palliative sedation and sedation to unconsciousness may have higher risk than other LAS resort options because they're potentially available to those with altered consciousness and those without a clear terminal illness. So again, we ought to be cautious and if you lose those anchors, that's when you really get cautious, when you really get ethics involved and palliative care involved and think it through very carefully. So the categories of safeguards, palliative care should be available and found to be ineffective, some rigorous informed consent process by patients, ideally if they're decisionally capable, if they aren't capable, immediate family using substituted judgment, diagnostic and prognostic clarity about the terminal illness. Again, an independent second opinion, the counter-transference issues are big with these patients and then being able to document what you do. So making these explicitly available, what are some of the potential risks? So if it becomes public knowledge that we are sedating people, that we allow this, is that gonna scare people? Again, it might lead to pressure to prematurely choose death, family pressure, financial pressures. It might undermine progress in hospice and palliative medicine that we get less committed to trying to find tough solutions to difficult suffering. Might provide too easy of an out and it could undermine fundamental physician value. So these are some of the risks, the same risks, some of the same risks you'd see with physician assisted suicide. So the bottom line, it only makes sense in the context of excellent palliative care. Currently, options are very unevenly and unpredictably available. It should be subject to similar safeguards as other last resort options. In my opinion, the real advantage to sedation as an option is it can be done out in the open and open processes are much safer for patients. They're more predictable and more accountable than secret processes. It is necessary and important to try to preserve personhood in the most difficult cases, the cases where the suffering is overwhelming. So clarity about which last resort options are available and under what circumstances is beneficial, it reassures those who fear bad death, increasing responsiveness to extremes of suffering, more ability to address unique circumstances and more accountability when suffering persists. So actually both proportionate palliative sedation and sedation to unconscious have been in the last 10 years have really, I think, become really important last resort options that are widely available in this country and they're taking the need for assisted suicide as an option much lower than it even was before because it does give us a way that can address almost all kinds of severe suffering. So in that sense, it's a very helpful option. It's got its own hazards, but I think they're surmountable by keeping the process out in the open and having people document what they're doing. So with that, I'll stop and we'll have some exchange. Yeah. Are you concerned at all, Tim, with this number you gave that in some programs 50% of end of life care might be sedation to unconsciousness, whereas in your program, as you said, it's zero to two cases a year. Is that variability raised concerns? Very much, very, very much so. So we began sending our fellows to one of our hospice inpatient units in our community a couple of years ago and they came back and said, you know, almost everybody when they get there is sedated to unconsciousness within like 24 hours of getting there. Almost everybody, you know, I said incredulously and I said, well, are you sure? Yeah, they were sure. And it turned out that their open hospice orders had a tight trait to comfort with no guidance of how to do that. So, and no upper limit. So again, I went over after about a week and met with the staff there and the leadership and said, you know, this is not good. It's not good practice, it's dangerous, it's bad medicine. And here's some ways you can tight trait in a more progressive way and you teach people to stop, you know, you stop increasing when somebody looks comfortable. And so that ended the practice but that's just one example of one place. A lot of hospice inpatient units are not very well regulated. I think there's a lot of variability within palliative care programs and institutions across the country about how they do this. Thank you. Yes, Ma'am. Where do you draw the line between terminal sedation and physician aid in dying? Where is the line drawn? Well, again, I'm probably not, I would say the line is sometimes hard to find. Sometimes it's easy to find, okay? So in proportionate palliative sedation, your basic, the endpoint is not death, right? The endpoint is relieving symptoms. That's the way it's defined. In proportionate palliative sedation, yes. But some of the patients that you do proportionate palliative sedation on will live for weeks or months, okay? Because you sedate, again, on a sedation scale, 10 being unconscious, zero being fully awake. Sometimes you'll stop at level three, which means people are a little sleepy, but you can wake them up. You can have a conversation with them. They can eat. They can go for a long time that way and you're relieving their symptoms. And that's probably more common than the sedating to unconsciousness. So in that case, I think it's a clear line. The more you're sedating quickly to unconsciousness, the more you're not providing food and fluids at the end, the more I think the line, particularly between that and euthanasia, is hard to find, much less assisted suicide. Right. And I know that you have talked about all of the ethical issues and who is involved in consultation and second opinion and family, but I didn't hear you talk about what the patient really wants. What? Because if I'm terminally ill and I don't have any quality of life and I'm not happy with the way things are, I would want to just say I'll have a party and kiss everybody goodbye and exit. And that would be my choice. Right. But in this context of palliative care, all I could get would be relief of my, hopefully relief of my physical symptoms, but not my personal wish to not have to suffer any longer. So if you lived in Oregon or, you know, Washington, you could have that conversation out in the open and if you were otherwise terminally ill and had access to palliative care, that would be the discussion. And if you wanted to have the option to have medicine that you could take to end your life, that might be possible in those circumstances. The rest of the country, if you have that conversation, that conversation, if your doctor's willing to have that conversation, again, that's a big if. We know that doctors in the rest of the country are not opposed to, you know, they're sort of open to this about maybe a half to 60% in general terms, but in terms of willingness to prescribe, it's more like 10, 20, 30% are willing to prescribe. But if your doctor was willing to prescribe, then the whole process is underneath the radar screen. It does occur. There are underneath the radar screen organizations that try to help people put you in contact with people, but it's very hard. And you lose the safeguards when you go underground. That's a big problem because maybe you've gotten depressed when you want that and you want to make damn sure this isn't a bad day that you're choosing to do this or that you're not thinking clearly anymore. So the safeguards are really important. That's the danger of letting the process go underground. Could you say more about how physical and psychic suffering are treated differently and what you yourself think about that difference? Yeah, I struggle, the physical side, I'm, you know, if I'm a doctor, an MD doctor, I'm much more comfortable in the physical than the psychic can. You know, I trained in psychiatry, a fair amount. I have some comfort in depression, but the more it's more psychic and spiritual suffering, not anchored by physical suffering, the more I think these options become more complex. So again, four doctors to do. So again, doesn't mean that they should be impossible, but I think the options that aren't assisted suicide for those circumstances don't make any sense, except for stopping eating and drinking. So stopping eating and drinking is something that, you know, anybody who is competent could do. It's not easy, but I have supported a number of patients, number of meaning, I could count them in my career on one hand, but still it has a beginning, a middle, and an end. There's actually a time for saying goodbye in the midst of this thing. There's, you know, you've got consciousness for most of it until the very end, and the end of it is very much like other palliative care where you're managing symptoms. Let me ask about the circumstance where an individual has refractory depression, not considered to be a terminal illness, and yet through years of attempts at treatment and therapy, nothing has been effective. Tell me your role in managing suffering in that circumstance. So that's like, that was the case that I did. I frankly, I just couldn't bring myself, even if, you know, I've demonstrated that I'm not above on rare occasions stretching the law or breaking the law. I just couldn't bring myself to do it in that circumstance and because the desire to die is such a core part of that illness that this man had. Now again, also part of me, you know, the part of me that has psychiatric training says, this guy's clearly ambivalent. He hasn't shot himself, he hasn't tried to hang himself. You know, those are hard things, but he hasn't done those things. So somehow he may be looking for my permission to do this. You know, there's a lot of complexity to this. So he keeps coming back, we keep having the conversation. He's a nurse also, he has access. He could find access to less violent ways. So I felt that I was holding the line and that it was important to do that. These are tough cases though. Again, what I do, if I'm in a tough case zone and I would encourage any of you who are thinking about, you know, going over to the dark side, you know, on a given case, find trusted colleagues, honestly, because it's really good to have them and shoot with them, talk to them, because that way keeps you anchored in making sure you're doing the right thing because the counter-transference issues are big. I'd like to extend that question just a bit. You talk about the psychic physical divide, but what about people who are not terminal ill with chronic pain syndromes, who are suffering deeply? Young people with recurring sickle cell disease, older people with osteoarthritis, that's irremediable. These physical symptoms that we try to deal with, would they fall under these categories? Well, they're not really terminal ill. They're not terminal ill, so the only option, if you wanna call it an option, and again, the more they're anchored in a serious physical illness, the more I would feel that would be one of the things I'd be looking for, but the stopping eating and drinking option, the not getting treat, you know, sickle cell person could refuse further treatment, for example, refuse further transfusion treatment, refuse other treatments they might be getting to. So they fall off the cliff periodically, they get rescued medically. If somebody was in that category, they could make that decision, and we could treat them aggressively. I've never met a sickle cell person who's one in that, but I could envision that happening. Again, it would be, you'd have to make damn sure, they're sure, and you'd want to make the decision in a good time, and you'd be double checking all the way through, and that's part of what this is, is trying to find individualized solutions, but I think the more you don't have terminal illness, the more you should be cautious in talking to others. That would be my own opinion. Dan? Well, thanks for your usual provocative presentation on this subject. I have, as you might imagine, lots of questions, but if I could ask maybe just two. The first is an aesthetic question. Why the choice of black and white for all your photos, which I found interesting and striking at the beginning, and then the second is about the use of double effect in palliative sedation in its various forms. One part that I think I have trouble get, first of all, I'm happy that you're now using double effect because previous papers, you had rejected it off hand, but in using this principle, generally one is talking about two different effects that occur from a given action. What I talk about, I describe it as a causal fork rather than a causal chain. It seems to me that in what you're calling proportionate palliative sedation, you're using double effect inappropriately because there isn't a causal fork. There's a continuum of one effect, which is sedation, rather than two effects that occur from the same thing. So for instance, while I'd agree with you that in most cases you don't need double effect in order to justify the use of opioids, there is a double effect in terms of pain control versus respiratory depression being two totally separate effects, different subtypes of mu receptors, et cetera, both occurring from the one action of giving the drug. In palliative sedation, particularly if you're using benzodiazepines or barbiturates, there's just a continuum of spectrum of one effect so there really isn't the basis for using double effect in that case, and I would think that it's actually inappropriate if you're using it with the aim of sedating the person rather than using a drug which has a sedating side effect but you're using that drug and targeting it to a specific symptom. In that case, you could have two effects, one of which is to, for instance, decrease the seizure activity, another would be sedation or something like that which would be double effect but you're using it along a spectrum rather than as a fork. So if you could answer that question about use of double effect in palliative sedation and also my easier question about the aesthetics, so I'd appreciate it, thanks. I'll do the second one first because I'm not sure that I fully grasp, but I'll tell you how, for lesser levels of palliative sedation, I don't think you need to do, just like with pain management, I don't think you even need to think about double effect but as you get toward the risk of really heavy or total sedation, then it seems to me, then it is relevant because if someone is totally sedated, you can see that it may cause some respiratory depression, they're not gonna be able to eat and drink, they're more likely to die sooner if they're totally sedated than if they're not and you know that that's gonna happen. If we sedated any of us to unconsciousness right now, we know that we would die, particularly if we didn't feed or put us onto a ventilator, put us, give us food. So it seems to me, and again, if you're doing it with the intent to relieve the suffering, it seems to me, seeing that is okay, as long as it's not your intent. Is that not, am I misunderstanding the double effect? But I'm gonna leave it to you guys to sort that one out later. All right, all right. This, the photo, I like black and white photography, I think it's rather random that I do, I have other photos that I use that are color, so I don't, maybe there's an unconscious that this is a black and white issue, you know, in my mind, but that's a little too deep for me. It's not black and white. I will tell you. There are shades of gray, even in the back of my mind. Tim, I worked with Kubler-Ross for five years here from 66 to 70, and I didn't recognize her in the picture, until you told me who she was, dad. Yeah, really nice talk. I'm interested in the idea that now that we have these types of sedation and good palliative care that assisted suicide is no longer really that that's not something we would turn to as we did in the past. And I'm curious about your sort of famous step into assisted, well, what would you call it? It was more euthanasia, really, wasn't it? No, no, it would be assisted suicide. I would call it physician assisted death, but other people would call it assisted suicide. So going back to that, now thinking about that, so if you had the palliative care services available at that time, you would most likely, I mean, what was, could you describe the times and your thinking at the time and what you think about that now retrospectively? So this is a case that I wrote up in the New England Journal in 1991 about a case where I provided a woman who was dying of leukemia with medicine that she could take as an overdose. She went on to hospice. She lived for three months on hospice, was getting, she was starting to actively die at the very end. For her, for this particular patient, she was like many patients who want this option, a person who liked to stay in control. So being in control was very important to her. And she wanted to skip the last phase of dying where you are potentially sedated, out of your mind, you know, kind of that stuff requiring total physical care. That to her, she had no interest in. So in that sense, she was quite typical of patients who would want assisted suicide. She would look at, again, thinking of the way she would look at things. She would have looked at palliative sedation and think that would be her worst nightmare because she'd be sedated to unconsciousness out of control of her being, out of control of what was happening to her. So a sedation would not have provided her with any solace. Now again, if we hadn't discussed this and that was the best we could do under those circumstances and she was starting to die, she would probably accept sedation. But again, that would not have solved the issue for her as it would not for a lot of folks who are interested in the possibility of assisted suicide. I do not differentiate much between suffering from pain, pain of suffering from diseases, of cancer, than a suffering that one has emotionally. It is the only intensity because sometimes emotional suffering is far more painful than a physical. But there is a difference between the emotional suffering of those people who are depressed for all their life and every treatment was done and nothing was effective than those who have depression secondary to their physical illness. So I would be cautious with this because they often, if one could relieve their pain and physical suffering, often their emotional suffering get better because those are more secondary to something rather than being a primary. And so usually the people who have both physical and mental suffering look to us more serious and as if more justifiable if they wanted to go than somebody who has really terminal illness because of cancer. And I think one may have to be able to treat both of them particularly if there is a preponderance of emotional suffering with someone who has physical self. Yeah, there's no doubt that as part of the evaluation of somebody who's requesting this, you are gonna address both physical and emotional and spiritual and all dimensions of suffering. And again, I have a couple of memorable cases and I'm sure many people do of people who, I was sure they were dying. They were really old. They were just in a ball and we're trying, we're going, they weren't wanting to die but they were dying. And you go through the same checklist because this is what we do in palliative care. We try to find what we can relieve. And we said, you know, maybe she's depressed. Now she didn't have time to go through an anti-depressant but we said, what the heck? We'll try her on some Ritalin, you know. And we said, we put on Ritalin the next day she's up out of, you know, what's for breakfast? You know, so she was not dying. You know, she would have died but she wasn't. So we do, that's one of the things we do in palliative care is we try to take a look at all these dimensions and see if there are ways we can intervene in any of them. And again, if you're talking then about stopping treatment or any of these last resort things you ought to have given a good faith effort to address the many dimensions of suffering that are relevant for a particular case. We're gonna take one more question, Shola. Aliyah, in your presentation, you described access to hospice care and palliative care as one, you know, for the affluent. Have you seen that change with the advent of Obamacare or are we doing a better job in ensuring that people actually understand what, you know, hospice, some palliative care mean, especially those that are not as affluent? So there's two ways to answer this. Just another recent Institute of Medicine report that was pretty harsh on our current state of where we are right now. And I think rightly so in terms of everything, have we made progress though? So this is my personal answer. This might not be my political answer. We've clearly made progress. Okay, hospice and palliative care are clearly more present at more places. You know, 10 years ago we were probably in 50% of academic medical centers. Now we're in 100% of academic medical centers. Now that is not everywhere, but that's progress. And again, as you look as we reach out there is more presence in more other settings. I think the big movement in palliative care to ensure that the floor is solid is going to be to train all good doctors to do the basics of palliative care because there's too much of it to do to rely on specialists to do it all. So I think that's the movement now to make sure every medical student and every oncologist and every primary care doc gets some basic training in palliative pain symptom management and how to have these discussions. I think that's our next challenge if we're really gonna talk about getting palliative care out to the population where they are and where they live. It's a key and important challenge. It does, now in terms of the assisted dying question it does, there are those who would argue that you have to solve all of that before you're gonna allow any of this. And I don't buy that argument because I think for individual cases that are thinking about this you have to make sure that they're getting good palliative care and they have access to hospice. So you can look at that at the individual case level as opposed to waiting till we solve the toughest problems for the entire society. Please join me in thanking Tim Goodman. Thank you. Thank you. Thanks. Thank you.