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Dr. Thomas: Hello, and welcome to the ASCO Education podcast series. My name is Dr. Thomas, and I'm a Neuro-oncologist at the University of Vermont Medical Center, and  Associate Professor in the College of Medicine in the Department of Neurological Sciences in Burlington, Vermont. As today's host, I will be moderating a discussion on medical aid in dying with four guest speakers, Dr. Gregg VandeKieft, who is a Palliative Care Physician, Clinical Ethicist and Executive Medical Director at Providence Institute for Human Caring in Olympia, Washington. Dr. Charles Blanke, a Medical Oncologist and Professor of Medicine at Oregon and Health Sciences University in Portland, Oregon. Sandra Klima, who is the partner and caregiver of a patient who passed away using medical aid in dying in Vermont. And Dr. Frank Ferris, who is a hospice and palliative medicine physician, as well as executive director of Palliative Medicine Research and Education at Ohio Health in Columbus, Ohio.  

For consistency during this talk, we'll be using the term medical aid in dying or MAID to refer to death with dignity and physician-assisted dying. So, to begin the discussion, I'd love to hear from Sandra about your perspective as a caregiver. Can you share with us what it was like caring for your partner and what your reaction was when you learned about his wishes? 

Sandra Klima: Yes. Thank you. I'm glad to participate. My partner had died of glioblastoma in April of 2018. When we found out, it was pretty shocking. The very first thing he brought up was Act 39. And initially I was very surprised and uncomfortable with it because I didn't want to think about death, I wanted to think about living. And he was very quick, Rob was very quick. We made an appointment at the funeral parlor. He wanted to get everything taken care of quickly. So I was shocked that he wanted to use Act 39. I did not feel that it was, as I said, appropriate to talk about, but he explained he had a friend who had glioblastoma and she did not take that action. 

And she kept a diary and he said it was very difficult to read. And he did not want to go through that process that she went through. He didn't want to lose who he was. He wanted to die as himself instead of a short time later as a lesser person. And wanted the choice, and Act 39 gave that to him. And I respected and supported his decision once we talked about it. Cancer is a progressive disease and there comes a time when you will not be in control. Facing that and knowing it only goes downhill is scary. So having the option that looked out before the end phase is a blessing, and it is death with dignity, and that's how it feels to me. 

Dr. Thomas: Thank you so much for sharing that experience. This has been a hot topic and I'd love to hear from our panel, what are some of the common misconceptions around medical aid in dying, and how is this different from concepts like euthanasia or assisted suicide? 

Dr. VandeKieft: Well, for starters in the United States, all the states that allow aid in dying require the person to self administer the agent. So it's not euthanasia where somebody else administers the lethal agent. Our neighbors to the north in Canada actually do allow voluntary euthanasia and about 90% of their aid in dying individuals do it by voluntary euthanasia as opposed to self-administration. Another misconception is that it is heavily targeting the most vulnerable and disenfranchised, when in fact data from Oregon and Washington really indicate that it's mostly the well-educated, economically privileged who tend to utilize the aid and dying acts. And so there's actually been some questions in recent years about equity in rural areas and for other people who have difficulty accessing aid in dying, 

Dr. Blanke: I'd love to reinforce that point. So, the Oregon data suggests that 74% of participants have at least some college, and almost 99% actually have medical insurance, although getting the insurance company to actually pay for the drugs is a different issue. I'd like to also suggest that opponents of death with dignity say that it violates the Hippocratic Oath, which I do not believe it does. Death with dignity deaths make up a tiny minority of overall deaths in any of the states where it is legal, and a good chunk of patients, somewhere between 30% and 60%, get the prescription and never even take it. So, I like to say that the act fights out of its weight class. A lot of people get the power and control of having that medication, but never actually need it. 

Dr. Thomas: I understand there are a number of safeguards within the law to try to protect patients and help access and protect physicians. Would you be able to touch on the safeguards? 

Dr. Blanke: I'll start there if okay, and most of the other states have modeled their law after Oregon's. So first the patient has to make multiple requests over time. They have to demonstrate a continued interest in death with dignity, and the law has built in cooling off periods. The patients have to clearly understand what will happen if they actually take these drugs, and what happens in 99.5% of cases is they will die as a result. The patients have to put in a witnessed written request for medications, and one of the witnesses cannot be related by blood or marriage, cannot be the patient's doctor, and most importantly can't be in a patient's will. They cannot have a financial interest in the death. So I think those are very reasonable patient safeguards. 

Dr. VandeKieft: One exception I would call out is the state of Montana, which did not actually pass the legislation or a voter initiative to legalize aid in dying. But it was a state Supreme Court decision that said it was unconstitutional to prohibit it. So they actually don't have a regulatory framework in place, but they do offer protections to physicians. If they participate, they cannot be prosecuted. But all the other states in the US that have laws have a regulatory framework, much like Dr. Blanke just described. 

Dr. Thomas: That's really helpful for the legal ramifications. What are the main ethical considerations around medical aid in dying? 

Dr. VandeKieft: If you think of the classic ethical framework, autonomy tends to drive a lot of the conversation, that is the patient's right to self-determination. If they choose to pursue aid in dying, even if we morally disagree with the appropriateness of it, is it our position to prohibit them from following through with it? But then many others will also look at the concepts of beneficence, that is the obligation to do good for our patients, and non-maleficence, that is the obligation to not do harm for our patients. And people on both sides of the arguments will invoke those terms. People who oppose it would say the good is to prolong life. People who support it would say the good is to give people the right to choose the best quality of life and self-determination. People who oppose would say that the death, if it's self administered is actually a harm. The supporters would say the harm is making a person suffer, when in fact they have the potential to cut that suffering short on their own terms. 

And so those ethics discussions tend to get into it fairly significantly, particularly around the public policy and social aspects. And then finally, at least within the health system I work, we've really shifted our focus away from a lot of the high-level legal and ethical debates and into what do you do for the patients who request it, and how do we make sure that there's non abandonment, accompaniment through the end of life, and that we seek out the reasons that they asked about aid in dying in the first place, and figure out how we can best serve the concerns that raised the question? 

Dr. Blanke: I would love to actually strengthen that last point that Dr. V just brought up. A lot of patients use up three months of their expected six months survival barely finding me. Because what happens is they went to their primary provider, asked for death with dignity. Their physician says, "I don't do it. I don't know anybody who does. Good luck with it." This is a legal option in the state of Oregon, as well as about 11 other states. And the question as to whether or not providers have the obligation to at least refer, is a strong ethical point. A lot of the state's statutes say they can't hinder referral. They have to supply records if the patient asks for it, but I'm not aware that any of them have mandatory referral. And I think the physician is ethically obliged to offer that possibility, even if they don't want to write a prescription, which of course is totally okay. 

Dr. Ferris: And if I might comment, I think the other obligation here is to, for the patient, particularly with cancer, but with anybody with any diagnosis who might be choosing this pathway is to ensure that they've had very early referral for palliative care services. That all their symptoms, any issues that are causing suffering are actually being addressed. And that as you have suggested, that they are clearly accompanied by somebody without bias, who understands how to unwrap and provide counseling in all the different realms psychological, social, spiritual counseling, to make sure that they and their families or their partners are in a really good place. Everybody's comfortable with the choice. The family lives on after a situation like this, and they need to have been comfortable with that. That the choice was the appropriate one for the person, and that what we're doing is we're respecting that person's choices and they're comfortable with it. 

Dr. Blanke: I totally support that. The flip side of the coin is none of the states really say what to do if you are unable to offer death with dignity. They don't certainly mandate palliative care. I see a number of patients who really don't have terminal illnesses, or they have terminal illnesses that they are not expected to die within the mandatory six months. And I think we should ask ourselves, why are they seeking death with dignity? We have to ask ourselves, "Should we be referring these patients for psychiatric care?" 

Dr. Ferris: Well, and if I could come back and emphasize that, I think oncology broadly has frequently had late referral patterns to palliative care services. I've got story after story, I'm a radiation oncologist by background, having done palliative care for the last 35 years. Even in the last couple of weeks, students learning with me have said, "We tried to get referrals and the oncologist wouldn't refer. Is there anything wrong with having a partnership?" So, the oncologist continues to do their wonderful work, at the same time we're managing the patient's experience and that people understand all their options, of which this is one of them, and they have a legal right to that in 11 states, so that we do the best possible care for people. 

Dr. VandeKieft: I want to amplify your point. Dr. Ferris, if people choose aid in dying as the culmination of excellent palliative or end-of-life care, that's a very different scenario than if they're choosing it in lieu of palliative care because they don't have access. And so anybody who has access to aid in dying certainly should have access to the highest quality palliative care and hospice care and behavioral health, as Dr. Blanke pointed out, to make sure that they aren't despairing for something that could be treated more readily. 

Dr. Ferris: And if I could add one more point, I think there's also a palliative care evangelist who says, "Well, if you just do this a little longer, everything's going to be wonderful." Except that we haven't made a difference. We as a community need to recognize when that's the case as well. So none of us are perfect, but it's the making sure we're a really comprehensive team and able to walk with people and honor and respect their choices. 

Dr. Thomas: Thank you. We've spoken a lot about some of the logistics and legal and ethical aspects. I'd love to hear about what the experience is actually like. What are the barriers that patients face when they're trying to seek out medical aid in dying? We have a caregiver here who directly experienced this. How was it trying to access this and are their barriers either individually or systemically? 

Sandra Klima: When Rob made his choice, we obviously had to go to the physicians and do the two interviews and get the approvals and wait the days in between and sign all the forms. But eventually we got to go pick up this medicine. But there was one pharmacy that had the medicine. We went, made a drive there. It was far from where we were. So we went over there. We had to plan it to be when there was a physician there who would give us the medicine. So that kind of struck me as strange. So you had to schedule everything and then you get there, and I don't know if it was my paranoia or what, but you feel like everyone's looking at you from behind the counter like, "Oh, you are the people coming to get that medicine?" And it was really just a little uncomfortable. 

And you feel like you were almost doing something illegal. So that is the pressure I felt during that process about that. The only other piece is once you start this process in motion, we had the hospice people and the palliative care people contact us. We had several meetings with them. We talked about it with our cancer counselor, so I was very comfortable. And most importantly, Rob was comfortable to get the medicine that he would have to take and have it with him. It gave him peace of mind. It gave him freedom to enjoy his life. 

Dr. Blanke: I'll add a few practical matters. The states that have death with dignity mandate that the patient takes it through their GI tract. That usually involves swallowing. We have a number of patients who are unable to swallow, or they have GI obstruction. They're allowed to take the medication through their rectum, although that eliminates a lot of the dignity from death with dignity. But we are not allowed to use intravenous formulations. Even if the patient self-administers. We also have patients and patients with Lou Gehrig's disease or amyotrophic lateral sclerosis make up about 11% of death with dignity users. Many of those patients do not have the use of their limbs. I had one young lady who was nearly completely paralyzed. She could move her head and she could move the pinky of one hand. And I spent somewhere north of four hours simply figuring out how she could fulfill the law by self administering a drug. 

Finally we put in an NG and she was able to press a syringe plunger while I held a syringe, legal in Oregon, with that single pinky. I think the law is incredibly discriminatory against people with disabilities in the interest allegedly of protecting them. Next issue is we talked about the written request, which I do think offers safeguards, but sometimes it's hard. If patients want confidentiality, which the law allegedly is interested in, they may not want their neighbor to know that they're going to do this and they may not have somebody who is able to sign the form. Finally, we have talked a little bit about finding a participating provider. That continues to be an absolutely huge barrier, particularly because it's not just one provider, it's a prescribing physician and a consulting physician. They have to find two doctors, and if they're in say a Catholic health system or they're at the VA, sometimes it's nearly impossible for them. 

Dr. VandeKieft: Loop back to Miss Klima’s comment about the peace of mind that her partner experienced, and note that sometimes even just the conversation provides that. I've had numerous patients who brought the topic up, and they weren't actually asking for requests. They were just seeking information or in one instance, trying to let her family know how badly she was suffering and bringing this up was a way of demonstrating that to them. But I had a patient with ALS who brought the question up. The fact that I accepted it, spoke back to her in a respectful and supportive manner, provided her some relief. 

But then when the doctors from End of Life Washington, the advocacy group who can help provide support to people in the home, came out and visited her, she responded that it alleviated her anxiety and her depression, didn't resolve them, but eased them. And that also she learned that she didn't have to act as early as she thought she would have on her own. And so I kind of jokingly said, "So meeting with doctors may have actually prolonged your life." And she laughed and said, "You know, doctor, it did, because I would've done it earlier if I hadn't met with them." 

Dr. Ferris: If I can speak to what you just said back in the era of HIV and AIDS, when we had very little, I cared for more than 1,000 people out in the community. And I would say more than 60% of them asked me that question of when they got to a spot of intractable suffering, when I hastened their death. And of course that was illegal in those days. But what I was clearly able to do, is talk about palliative sedation for them, to be clear I would look after them, clear I would look after their families. And just as you have suggested, I think one of the huge issues is, "I have an option. I have an alternative here. Somebody is going to look after me. And if I've decided, if I'm going to go to medical aid in dying, if I'm going to go the palliative route, I don't have to experience the horrible part that I don't want to experience." 

We need to talk about both of these openly with people, and be clear that they and their families will be accompanied in whatever the process and as you've suggested, without judgment, maintaining confidentiality. These are super important issues for people. I think about my own personal future, these things loom. I think it is people with lots of thoughts about what might happen, maybe a bit too much knowledge, who worry about the intractable nature of suffering, whatever it is, whether it's psychological, physical, spiritual. It's being able to accompany people appropriately and respect their choices. 

Dr. Thomas: Right. 

Dr. Blanke: So I'd like to add one more practical detail. We talked a little bit about finding providers and how difficult that is. And if you think about the challenge of finding two providers in Portland, you have to multiply that by about 100 to find any providers in Klamath Falls or Eastern Oregon. The good news is telemedicine has made our lives and the lives of our patients quite a bit easier. 

Dr. Thomas: As I listen to the conversation, I'd be curious about your thoughts about health equity issues around this. You've alluded to the fact that somebody who has physical or neurologic disability may have challenges depending on where you live. It may be challenging to access. Are there other populations of patients where you worry about health equity and access to medical aid in dying? 

Dr. Blanke: Well, I can comment that most of the patients find me or my colleagues who provide this through web searches. So, they have to have access to computers, which is not necessarily all that easy for all the rural residents of Oregon. Even though I told you that 99% of patients have insurance, we also mentioned that getting the insurance company to pay for the drug is very, very difficult. Hospice almost never wants to pay for it for the usual hospice- related reasons, and the drugs are about $700 in Oregon. That is a hindrance to a lot of my patients. 

Dr. VandeKieft: I think being mindful of historic disenfranchised communities, people of color, Native Americans, that the healthcare system has not always treated fairly historically, and they have reasons to be suspect at times. Now this is something that usually they will seek us out as opposed to the healthcare system promoting it, but just being sensitive to the fact that we're doing something that could be perceived as problematic by communities who have historically been mistreated by the health system as well as other systems. 

Dr. Thomas: I'd like to just have a better understanding of residency and the law. I think that there is written into most of these laws, you have to be a resident of the state where medical aid in dying is available. But what does that mean to be a resident, and how do states define that? 

Dr. Blanke: So for us in Oregon, it's not like the classic situation where you have to demonstrate that you have a driver's license or you have to produce a gas bill in your name. The statute basically allows the prescriber to define residency in their own mind. 

Dr. Thomas: What advice would you give to oncologists and other physicians who might have patients approach with questions about this? How do you talk with patients about this matter? 

Dr. VandeKieft: The very first thing I respond to is... This is a very important question. I appreciate that you brought it up and that you have the [inaudible 00:20:35] and trust in me to raise the topic. But before I get into the details, I'd like to learn more about what led you to ask me about it. Would that be okay? And even that last phrase, would that be okay as intentional and that by asking permission, I'm making sure that they have agency, and demonstrating respect to them. But that approach has made a huge difference in that I have learned on many occasions, people have no intent of actually proceeding with it. As I mentioned earlier, they may simply be asking for information. 

One gentleman, his response was, "Well, my buddies told me about it, and I didn't even know that was a law. And when I started to explain it, he said, oh, that sounds too much like suicide. I would never do that. And then the other woman, I referenced, she went through it and then looked at me and said, “Doctor, I would never do it.”, and looked at her daughter and son-in-law, “I just want my family to know how badly I'm suffering.” And so starting with that open-ended question is really crucial because if we make assumptions and if we start projecting our own biases onto them, we may completely miss what they're looking for and the opportunity to provide them the best services that we could. 

Dr. Blanke: If I merely mention that this is an option, the patient is going to think that I'm recommending it, and I certainly don't see it that way. It's just one of many options. If we offer chemotherapy, we are not mandating that particular drug or even suggesting they get chemotherapy at all. Certainly, with the exception of palliative care, I recommend they seek that out, that I really want them to seek it out. But I think it's incumbent on the providers if they see a patient with a terminal illness to list this among the many options that are possible for the patient living in Oregon or those other 10 states. I know that's controversial. 

Dr. Ferris: Well, I really want to highlight what you just said, Gregg, about the process of inquiry. To me, everybody practicing oncology, everybody practicing medicine needs to be able to model exactly the way you opened when asking any significant question, including prognosis, "When am I going to die? What about this therapy?" Because what we know, many of the times, patients aren't asking what the words specifically say, they're calling out their suffering and how can we help them? Or they've got a plan, they've got something they want to do. So that was beautiful modeling, Gregg. 

Dr. VandeKieft: Dr. Blanke, he used that example of people not hearing. And one of the cases that I still struggle with a little bit, I work in a Catholic health system, so I'm not a participating physician. And we're really counseled that we shouldn't be the one to bring it up. And I had an elderly woman. I was doing a hospice home visit and she asked me how long I thought she had. And unfortunately, Dr. Ferris, I didn't think to ask her what led her to ask me the question on that occasion. And I probably should have, because I told her my prognosis and she looked at me with a profound look of disappointment and said, "I don't think I can suffer that much longer." And a couple of days later, she died very unexpectedly. She took an intentional overdose and the fact that I didn't inform her of the option of aid in dying still haunts me that I may have failed her. 

Dr. Thomas: Thank you so much for sharing that. Ms. Klima, we've heard a lot from the experts. Is there advice you'd give patient to patient or caregiver to caregiver about what to ask your physicians? 

Sandra Klima: You need to ask as many questions as you want and have the doctor answer you truthfully. I think when a patient is asking a doctor a question, they're asking the doctor, "What are my options?" I'm going to assume you're going to give me all the options. I'm not going to assume you're not going to tell me the options you don't like, because I want to know what are my options. I'm the one who's suffering. I'm the one who will have to make a choice. And I can tell you the choice Rob made, to use Act 39 in Vermont, was a blessing for us. It was a peaceful death that I cannot overemphasize. It was the right decision to make. It was for his decision, but it was the right decision to make. 

And I think if a physician would not have told us of that option, I would be in the same situation that you felt, Gregg, where the lady took it upon herself. Because you thought through it, you had a plan, it was planned. It was a nice wind up to an ending. And I think that physicians owe it to their patients to tell them all of the options available and let the patient make a choice. I also think physicians owe it to the patient to be clear what the end phase of their life will be. Because it's not roses. If they don't do this, they have to live through that end phase, which sometimes it's horrific. And I think they need to have a clear understanding of what's to come and a clean list of all the options. And I think that should just be required, and personal choice of a physician is not on the table. 

Dr. Ferris: So it's important that we explain all the options, I completely agree, that are available within the context of the law. And certainly in the Americas, in Europe, and I've been in many other countries where palliative sedation is one of those therapeutic options. Where the patients can have amnesia, the family can be well looked after. We need to describe all the available options that are within the law, in the jurisdiction in which we live. I completely agree. 

Dr. Blanke: And I'll add that that actually also applies to some of the patients who want death with dignity, are suffering horribly but don't actually qualify because they have a chronic illness expected to live too long. I just saw a patient last week and we actually talked about VCED, the voluntary cessation of eating and drinking, which is something that many, many people fear, including providers, but if done properly is fantastic. She used VCED. She passed away. She died two days later and her family could not have been more thankful. 

Sandra Klima: I'll chime in on that because the comparison between my father dying and Rob dying, it really just has an impression on my mind. My father did not have a diagnosis of X amount of months to live, but my father had chronic problems and he was suffering. And the death that I watched him go through and was with him for, was nothing like Rob's death. It wasn't peaceful. It haunts me today. It haunts me. My father should have been a candidate, but he wasn't. What was the point of living four more months in this miserable state? 

Dr. Thomas: You know, it dawns on me that this is a very different kind of death. It is not suicide legally or medically. It's a different process than natural death from a terminal illness. And it's not even possible in every state or every country. And I imagine it is very different for the people who are left behind, for family members and caregivers to process this kind of death and bereavement after their loved one passes. Can you comment, Sandra, on how medical aid in dying affects the caregivers and affects the family and how you can prepare for bereavement and support in bereavement? 

Sandra Klima: I felt that this death was anticipated, and my bereavement, the part that bothered me about Rob's end of life, was that I was unprepared for how quickly the decision was made. The decision was made quickly because he started getting paralyzed again on the side of his body. And he decided, "Today's the day." And it was three or four hours later, and it took me by surprise at how quickly the decision was going to be made. That's the only part I regret was I didn't have a strong enough plan about what was going to happen when that decision was made. That probably needs to be emphasized because you can plan all you want when it's not going to happen. But at the moment it happens, it's like a fire drill. You got to go through and get all those things lined up. And I can tell you, I felt worse for my father's death than I did for Rob's death. So even though it's a different kind of death, it was a peaceful death with dignity. 

Dr. Blanke: In terms of the bereavement, I have seen all sorts of responses from patients' families initially, from those who could not be more supportive. Sometimes they even seem to want it more than the patient does, to those who actively oppose it. But in my experience, which now numbers about 205, the families are almost always on board at the end when they see how much the patient has been suffering and how much peace the actual control over the patient's life and death gives them. I always offer after the patient is gone to the family to contact me whether it's a week later or a month later, or a year later, if they have questions about the process, if they need any help in referrals. It's never happened a single time. 

Dr. VandeKieft: I think back to the landmark article that Tim Quill published in the early 1990s about his patient, Diane, and how he highlighted that she ended up committing suicide. And there's kind of a shame, it's done in the shadows, and that when you have aid in dying as an option that can be brought out into a planned open manner in the way that Ms Klima is describing with her partner. And then also with the bereavement and the partners, I think we need to listen once again. I just had a case yesterday that somebody was telling me of a gentleman who got the prescription for aid in dying, but ended up not taking it and died of "natural causes." 

His wife told the bereavement counselor afterwards, “That was such a relief because I was struggling terribly with the spiritual aspects of this. And I would've really had a hard time had he gone through with it.” She had not shared that with her husband or anyone else because she wanted to be so supportive of him. And it was only by the bereavement counselor, listening and opening up that she could really understand, "What are the true struggles that this family is going through and how can I meet their needs?" 

Dr. Ferris: If I can comment, it doesn't matter whether people have chosen medical aid in dying. When people die, there's a loss for anybody who's a survivor. People can be comfortable with the process that occurred or not. They can perceive suffering or not. The loss leads to changes. And what we know is the transitions through the loss period that we call bereavement for different people are profound in different ways. And what we need to make sure is that people are connected with services. It's why with every patient I care for, whatever therapy provided, I do participate in ventilator withdrawal. I participate in palliative sedation. I've done this all my career. I make sure they're in the hospice system, in the United States, which provides people with 13 months bereavement support or more, because if a death occurs in a hospital without hospice care, then the patient gets a decedent phone call from the chaplain, if they're lucky, or they're lucky enough to have a physician like Dr. Blanke who says call me. 

Most people don't make themselves available and you're out at sea. And we know that the suffering of a bereavement can lead to incapacitance, people depressed, not functional, people even get illnesses in the process. So there's a huge cost to society for not addressing this issue carefully. It's about the preparation, and what I try to do is get the bereavement conversation going before the person dies, so that we're talking about it and integrating it. 

Sandra Klima: Right, I agree. 

Dr. Thomas: Thank you all so much for this conversation. Thank you, Sandra Klima and Dr. VandeKieft and Dr. Blanke and Dr. Ferris. I think this was such an important conversation. Talking about death can be very difficult and I just appreciate the openness and sensitivity and your willingness to share these experiences. Thank you to all of our listeners. We appreciate you tuning into this episode of ASCO Education podcast. 

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