Hospice care can be confusing, not knowing who is involved and what services are available. Rev. Elizabeth Uslander introduces you to each member of the team, describes how hospice works and explains what insurance covers.
Dr. Lonny Shavelson is the founder of Bay Area End of Life Options, a medical practice in Northern California devoted to educating about medical aid in dying and supporting patients and families through this process.
Bay Area End of Life Options
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Dr. Bob: Dr. Lonny Shavelson is the founder of Bay Area End of Life Options, a medical practice in Northern California, devoted to educating medical providers about medical aid and dying, and supporting patients and families through this process.
As you’ll soon discover, Dr. Shavelson is an intelligent, articulation and passionate physician, who has a huge heart and is committed to providing excellent care to people dealing with terminal illnesses. He and I are bonded by a similar commitment. We also share a bond in that we were both emergency physicians in the past. We’ve seen the standard way people are cared for at the end of life, which is often not very pretty, and often not aligned with how they’ve lived their life.
As you’ll hear in this interview, Dr. Shavelson has experienced his own brush with death, which has created far more understanding and empathy than he could’ve imagined. I hope you find this discussion as informative and interesting as I did.
Well, Lonny, I’ve been looking forward to this conversation with you for quite some time. I saw it coming up on my calendar. I was excited and woke up today really energized to have this conversation and be able to explore deeply, what it’s like for you to be a physician that’s in the same realm as I am, in support of medical aid and dying. Thank you for taking the time to speak to me and my listeners today.
Dr. Shavelson: You’re really welcome, I’m glad to be here.
Dr. Bob: Yeah. So, just maybe give me a little bit of … Give all of us a little bit of background, as to how you came to be the physician with Bay Area End of Life Options. What was your journey leading up to that, and what made you decide to venture into this?
Dr. Shavelson: Let’s see if I can condense this a little bit. When my interest in going into medicine in general, as happens with many people who go into medicine, comes from a family history of dealing with illness. I think many people in medicine if you ask them this question, why you went in, they’ll start off with the, “I want to help people,” answer. And if you dig a little bit deeper, you’ll find there was some illness in the family in their prior history.
So mine, very specifically, was my mother had Crohn’s Disease. It’s an inflammatory disease of the bowel. And because of that disease, imagine having cramps and diarrhea all of your life every day and having multiple surgeries on your bowel to try to accommodate it and bowel obstructions and all that. She was a pretty miserable person, and also in retrospect, severely depressed.
So when I was starting at the age of about 14, I became not only aware of the fact that my mother was suicidal, but she enrolled me in pacts for her death. Part of the reason that I was guided toward medical school was because of the, my mother sort of wanting to know that I would be available, not only to help her in her illness but also to help her die.
Dr. Bob: Wow.
Dr. Shavelson: So we used to have conversations around the dinner table about my mother’s dying. And I thought that was the normal way people grew up. I didn’t, you know … You know, if you grow up in a certain way, you assume that that’s the way it is. You don’t have any other experience of any other childhood to compare it with. So I thought discussions about death and dying were what people talked about during dinner.
Dr. Bob: Not me, it wasn’t happening at my dinner table, I’ll tell you that much.
Dr. Shavelson: Yeah, now I realize that [inaudible 00:03:48] doing that. We didn’t have football and baseball on the TV. We had sort of philosophical conversations about death and dying, including suicide.
Dr. Bob: Wow.
Dr. Shavelson: So my mother-
Dr. Bob: We had the Dick Van Dyke show, and the Andy Griffith Show.
Dr. Shavelson: Well, we did some of that too. It falls short to what it was.
So anyway, I grew up with death and dying discussions, including the potential for suicide as a rational way out of an illness. That was one thing that guided me, certainly into medicine, and when I got into medicine, I kind of left that behind for a long time, realizing it was pathological. It wasn’t reasonable, especially in my mother’s case. She was severely depressed I was her son. She had asked me to help her kill herself a number of times, and I had turned that down. But in the end, I knew that if she was very sick, and if that was what she did, and if it was more reasonable that I would then help her.
And this was way before anything like medical aid in dying or what was then called physician-assisted suicide, was even thought to be legal at any time in the future. We were back in the 1970s by the time I went to medical school.
Anyways, so that led up to … You know, I got into my medical career as an emergency medicine doctor. Over time, I developed a dual career as a journalist and a photographer, as well as a medical doctor. So I worked about half time at each and actually moved fairly advanced in journalism with writing some books, with working with NPR as a reporter. So my journalism career took off in the same way that my medical career did, pretty much advancing over time. And to cut this to the chase, in 1996, I wanted to explore this question about what was then called physician-assisted suicide more deeply on an official level.
The reason was that Jack Kevorkian was starting his nonsense, killing patients. And I always change that to killing patients who weren’t his patients. And I thought that that was not a very good model of what we could look at for helping people die in the United States. But it really struck me that there was a significant underground, where … You know, and I know, Bob, that before anything was legalized, if somebody were close to death and were really suffering, we would turn up morphine drips, we would increase medications in such a way that we knew we were participating in aid in dying. But with a wink and a nod to the families saying, “Give him morphine once an hour,” type of thing. Knowing that would bring on the death. Because the patient was having severe suffering and was nearly unconscious and just needed to be helped along.
That, and the presence of the … I was going to say [inaudible 00:06:38] presence of the AIDS community. People were dying of Autoimmune deficiency disease. And they were really actively participating, but in the underground, of hoarding medication. So if you had AIDS, you could easily tap into the AIDS community and get thousands of tablets of morphine or methadone. It wasn’t hard to do, because people were hoarding their medications with the intent of using it themselves. And if they end up not needing it, then they would pass it on to this sort of medical bank where medications were stored.
That was the beginning of an interest I had in the pharmacology because they had the pharmacology to really try to do this right. Whereas individuals in their homes and in darkened bedrooms were talking with their family about wanting to die and then taking all of their, let’s say their hospice medications. That often did not work.
Anyways, this led to a book I wrote, called A Chosen Death, in 1996. And it was called the Dying Confront Assisted Suicide. It was about this underground … I found families and doctors and nurses, and various people who were participating in a very significant underground. Where they were helping people, who requested aid in dying. They were doing it without charting a note; they were doing it without keeping any record of what happened. But I was able to write the story of five different families as they progressed through this. And in 1996, A Chosen Death came out. And the conclusion was very, very simple.
When you look at what I call dark bedroom suicides when you look at those dark bedroom suicides, hidden, and nobody could talk about them, there were so many things wrong. One was that often because of inexperience; the wrong people were taking the wrong medications at the wrong times for the wrong reasons. And then taking medications that didn’t work and having disasters follow. It just was a terrible scene, actually. And my conclusion was, this is going to go on like … Comparison with abortion is very strong, is that there were back-alley abortions, and we were having dark bedroom suicides. What’s wrong with the back alley abortions is that they were terrible, they were not supervised, they were not done well. And they would continue no matter what. What’s wrong with the dark bedroom suicides was the same.
So I made a very strong, I think argument in the book for legalization. Based on the fact that making this illegal was not working, was creating a disaster for families at the most important parts of their loved one’s lives.
That started, my political involvement for about three, four years I stayed very politically involved as the supreme court was writing its decision. In 1998, the Supreme Court made a decision where all nine justices decided this was not a constitutional right. But that the states had the right to do this. So in other words, there’s nothing in the constitution that says that legal medical aid in dying should exist. But there’s also nothing that prohibits the states from doing it.
So one by one, I watched the states Oregon, Washington, Montana. It took 22 years more after I wrote the book A Chosen Death before we got this all legalized in California. And then, to bring it up to the present, when the law was legalized, I thought the way of starting it up was terrible. There was not enough primary education happening. Doctors were confused about what it was. The people who were looking at it were like, medical risk advisors and hospitals, and lawyers in hospitals trying to figure out their policy. And nobody was looking at the clinical practice of how this would work.
So I decided to start up a practice with the intent of a couple of things. One was that I would be available to patients who could not find another doctor to do medical aid in dying with them. So if a patient had a desire for medical aid in dying or at least a question about it, and they approached all of their physicians, and the physicians said, “No,” for a variety of reasons … And Bob, I’d like to talk to you more about that in a bit. But if they couldn’t find another doctor, then I would become their doctor and help them with the physician aid in dying.
And that started up in day one of the new law, on June 16, 2016, and has been going ever since. And has grown so much, the request for services from my practice Bay Area End of Life Options has grown so significantly that I had to take on another doctor. So I now have Linda Spengler working with me, another physician. And then we took on a wonderful nurse, Thelia De Wolf, who is a hospice nurse. And we sort of borrowed her permanently and brought her into our practice. So we have a practice of three people now. To date, we have taken over 800 requests for medical aid in dying from different patients across the state of California. And for various reasons, we sort of brought that down by referring patients to other doctors or talking to their doctors about participating. There are lots of ways we’d windle that number down.
So right now, about 240 patients have been in our practice, where we follow them for a request for medical aid in dying. And to be clear, when somebody calls us for medical aid in dying, it doesn’t mean that we just give them medical aid in dying. There’s a long, evaluative process. We work with them about their palliative care, we work with them with their hospices. We talk to them about ways they may die, and that this is just one of the ways that they may die or choose to die.
And what that’s resulted in now, we stay at the bedside when a patient takes the medication. It’s the hallmark of their practice. Is that we don’t feel that this should be the responsibility of the patient or the family to be taking medications at such a difficult and anxious day, the day that somebody is about to die. And everybody’s worried about it. And when we walk in the door, the worry just goes out the window and they’re able to do what they should be doing, which is pay attention to their loved one who’s dying. And pay attention to themselves and how they’re reacting, instead of being the ones who are mixing up medications and worrying if it’s right, and worrying how it’s going to go. And they’re all alone doing this medical procedure, with the patient.
We have been at every one of the bedside deaths. We’d been, I’m sorry, at the bedside of every one of our deaths, which are now 114 deaths at the bedside. The advantage of that is that we’ve been able to get really good at this. We get a sense of the social aspect; we get a sense of the family aspects. We get as a sense for the need of how much palliative care, and how to talk with the patient about alternatives. They don’t have to do medical aid and dying. But if they really do decide that they want medical aid in dying, we are there for them. And that’s the fundamental part of our practice.
The other thing that having such experience does is it lets us travel the state a lot. We get requests from all over, and we travel quite a bit in order to help patients. And every time we go to a place where there’s no access, where the patients ask all of their doctors, and they couldn’t find anyone. We would then talk to the doctors in that community and usually find two or three. So a great example is we found that we were having to go very far up north for us to Paradise, California, near Chico. It’s a three-hour drive. We get tired doing three-hour drives and coming back.
So we started looking around and beating the bushes, and finding docs in Chico who might be open to it. And we now have a group of three doctors in Chico who are very open to starting their … To adding to their own practices, their family practitioners. And they are now going to add to their practices medical aid in dying. And we are going to train them. And soon, we will not have to go to that part of the state again.
And that’s the wonderful part of this. Is that we don’t want to have this practice of medical aid in dying become centralized to a small practice like ours. We want many, many doctors around the state to be doing this. And slowly we’re seeing that happen, where there are areas of Northern California where we no longer go because we know the doctors up there who will.
Dr. Bob: And that’s phenomenal. Just being able to expand the access for people. And of course … First of all, thank you for sharing that background, and kind of expressing in such great detail what your practice entails, how you support patients. Thank you for doing the work. I know that it’s not easy. It can be extremely challenging, emotionally, and taxing in many ways. Because I’m also doing a very similar style of practice.
As much as it’s challenging and taxing, it’s also very gratifying, right. I know that you feel the same way. That there are people who are suffering and struggling, and they’ve been shut down by many physicians, and they’re just so grateful to find someone who’s willing to not just support them in going through the process, but truly support them. And truly support their families, and make sure that they have all their questions answered, that they know all the options. And that the fear of this is, if not completely removed, certainly lessened.
Dr. Shavelson: Yeah. You know the most common, repeated expression I hear is about what you just talked about. Is about fear. Commonly when somebody’s dying, they’ve never done that before. And so they’re quite afraid, what does it feel like when I get that close? I mean, you may know you have your cancer and all that. You know what it feels like. But when you’re that close to dying, you don’t quite know. It’s really frightening as to where do you go, and how does it work, and how much suffering is entailed in the process of dying.
So I’ll sit down with a patient for an hour or two. And we will talk about what I call the how you die conversation. And the thing that, the response that’s most common, is that they will tell me, this is the first time that I’m not afraid of how I may die. That nobody has explained that to them, and given them all of the options, including medical aid in dying. And really explain, this is how the process works. You may slip into a coma, and be quite comfortable. Or you may have an anginal agitation. Or you may be short of breath, and that can be treated symptomatically, but not completely.
And we go through the how you may die conversation, and then every individual. And then they take a deep breath, and say, “My god, this is the first time since my diagnosis that I am not sitting here afraid of how I die. I know that I control it now.” And that is the most moving, and tearful moment that I’ve ever experienced.
Dr. Bob: Yeah, what a beautiful thing that is. And it’s kind of crazy to think about, but I have that same experience over and over again. No one has told me, no one has talked to me about this. No one has actually talked to me about my death. All they talk about is how they can palliate me, and how they can comfort me and everything leading up to it.
Dr. Shavelson: That’s right.
Dr. Bob: But even hospice folks. For some reason, there’s just this reluctance. It’s a fear on the part of the providers to actually engage in that conversation. Maybe it’s their own fear; maybe they’re afraid they’re going to upset people. But it’s just the opposite.
Dr. Shavelson: Yeah. You know, I think Bob, that in a lot of ways, the entity of the legalization of medical aid in dying, has made it so, that before you offer somebody such a serious option, you have a real conversation with them. It’s kind of almost built into the law, though I don’t think that’s necessarily the reason. The law really says that we have to explain all alternatives before we can accept a patient for medical aid in dying.
And that’s not what drives my conversations with the patients. What drives my conversations with he patients, is that they really should know what’s up in their future, and how they’re going to die. But that conversation about, how will dying happen, is oddly enough in legislature for the first time. And I think that’s a healthy thing. There are many bad things about this law, but there are some good things about this law. And as it sounds like, your practice sounds very similar to mine, in that we spend time because we are not going to have this decision taken lightly, to take medications to end your life. We don’t want that to be a casual decision. And therefore, we’re going to have a really in-depth and truthful conversation with our patients.
Dr. Bob: Right. And really, by setting up our practices the way that we have, it really facilitates that. I understand the limitations that a lot of providers have, a lot of physicians. They don’t have the time, or it’s very difficult to make the time to have the depth of conversation that is required to work through all of these different aspects of life and death.
There have been a number of occasions where I have been asked to come and speak with someone who’s requesting support through aid and dying. And after exploring all of the things that are leading up to it, and their reasoning, and what they’re going through, they’ve actually made the decision to not request medical aid in dying. But to choose a different route, which in several cases, has meant bringing things into their life which will enhance the quality of their life. To try, some of the integrative therapies that we offer. They’ll bring in a music therapist to do some legacy work. They’ll bring in exercise, or physical therapist to provide them a little bit more human touch and connection.
The conversations that sometimes occur unexpectedly have been so meaningful and profound. And then they may come back, in another month or two, or may not. But I think the opportunity to explore this option, for many people, has allowed them to look at things in a different light. And I think as you’ve experienced as well, sometimes people just want the option available to them just in case. They have a clearly terminal illness. They know what’s coming in their future. But they’re not in the point where they’re ready to check out. But once they have this available to them, they have such a dramatic shift. And part of it is-
Dr. Shavelson: It’s a shift in thinking and feeling. They become comfortable to explore. I’m right with you, is that what happens sometimes when you tell them that medical aid in dying is available when I sit at the bedside and I hold somebody’s hand, and say, “It’s okay. We’re here if you want that we will do that.” And agree with them, which is the first time they’ve had agreement rather than battles about it. And I say, “It’s okay if you want to do medical aid in dying, I’m here. I will do that if you get to the point where you’re suffering enough.” And that allows them to go back into treatment.
I’ll give you a very specific example we had just recently. We had a 58-year-old guy with lymphoma mass in his chest, who was quite uncomfortable from it, that turned out to be cancer in a lymphoma, which is quite treatable. But the treatment takes chemotherapy and radiation, and he had seen the path that some people with chemotherapy or therapy and radiation go. And it’s really suffering and uncomfortable for some people. So he turned it down. He said, “Okay, I’m deciding not to have that treatment.” They told him it was still treatable; they told him he could live with it. But he decided, no I’m not going to do all those nasty chemicals and the radiation. And he was sent home to hospice because that time he was getting sicker.
And then it took him a month to get somebody to agree that they would help him in medical aid in dying, which was what he was asking for. So he was in a hospice that didn’t participate, and the family found my practice on the web. I came down to see him. And he … You know, we had the long conversation about how you die, and why he wanted to reject treatment. And he was just fundamentally scared of dying, and he wanted not to have these sort of dangerous, and difficult treatments on the way that would make him even more uncomfortable and give him more agony. He just didn’t get it.
So, I agreed. I said, “Okay. You can, if you want, have medical aid in dying. We will be there if you’re suffering. And it’s not there yet, but we will be there if you’re suffering in any way, shape or form gets too bad that you want medical aid in dying. We will be there for you. And oddly enough, he turned back around, decided to go back and have chemotherapy and radiation. He knew that if the chemotherapy and radiation got so bad for him, he could turn to us and have medical aid in dying. He knew if he’s dying eventually got so bad.
So he went back, and he had chemotherapy and radiation, and lived for another year and a half as a result of that decision, always knowing that he had the ability, if things got so bad, to have medical aid in dying. That we would help him die. And then it took a year and a half, and then three months after that when he went back into hospice after the treatment stopped working it was another three months before he finally got to the point of saying, “I’m now uncomfortable enough.” And we helped him to die probably about 18 months after his initial diagnosis when he was dying within weeks when we first met him.
So these turnarounds can be very dramatic by just saying, “If things happen that are bad, we’ll be there for you.” We actually have two patients now on the transplant list. One for a bone marrow transplant, and one for a liver transplant, who are keeping us just sort of in the sideline.
Dr. Bob: Yeah, in the wings.
Dr. Shavelson: Where they’re, in case … The bone marrow transplant especially, because if a bone marrow transplant fails, it can fail spectacularly. So he’s starting the bone marrow transplant only because he knows that if things really go down fast, if he gets very, very sick very quickly during the transplant process, that we will be there to help him die. And that’s allowing him to move forward with the transplant. I think those are phenomenal stories. They’re not the typical death that we do, but they happen often enough, that I can tell you taking away the fear of death allows you to really push forward with your life.
Dr. Bob: And that happens from the very first conversation, right. And it’s so profound; it’s palpable. It’s palpable when you walk … And sometimes it happens from the first phone call when they know that you’re going to be coming out to meet with them. There’s already this sense of, oh my goodness; someone is on my side. They’re willing to hear me.
It’s been … There’s been so many conversations that have been so touching. And it affects not just the individual, but their entire family.
Dr. Shavelson: Of course.
Dr. Bob: You know, one of the things that we talked about, and I think you wanted to come back to this as well, was why physicians say, “No.” Why they’re … So there are two parts to this. One is, what’s going on, why are physicians reluctant or unable to provide support? And then the other part of that, is what’s the danger of having more physicians participating, who haven’t gone through a training process, or who don’t have the experience that people like us have.
Dr. Shavelson: Yeah, you hit this on the nail. This is exactly the dilemma of how to deal with the access problem. So let me take that on if I can.
The major problem we’re having in California now is lack of access for patients who want medical aid in dying. There just aren’t enough doctors participating, in order to do this. And I think when you look at the data, and everybody says well if you look at California in 2017, there are only 376 deaths from medical aid in dying. It’s a tiny number relative to the total number of deaths. My answer to that is that’s not because so few people want medical aid in dying. It’s because so few people can access medical aid in dying. If you really wanted to do a survey, you have to find how many people have requested medical aid in dying, and then were turned down and just couldn’t find anybody else. And I think that’s a huge number.
So it’s a problem of supply, not demand. The demand for medical access in dying … Medical aid in dying, I think is quite significant. The supply is not that high. So let’s get into that.
There is the most common reason that I hear that a doctor says to a patient. And these patients relay these conversations to us. They’ll say, “I called my doctor up, and he said you know what, I understand your position, but I don’t know how to do this. I have no experience in it. It’s not that I’m morally opposed. In fact, if I knew I could do it, I’d be glad to help you. But there’s been no training; there’s been nothing that I know about it. In fact, you’re my first patient asking for it.” Is really common. And so, I don’t know, and I’m not comfortable doing a procedure I’ve never been trained in.
I get that comment from doctors, more commonly than I get that the doctor is morally opposed. So many, many, many patients tell me about their doctors who say, “Yeah, I understand what you want, but I can’t do it because I’ve never been trained.” Doctors, as a rule, like to do things they’ve been trained in and don’t like to do things they haven’t been trained in. And this law never incorporated anything about training.
Bob and I can tell this audience, that you don’t want to do this without knowing what you’re doing. We’ve heard some strange stories about doctors using the wrong medicines because nobody told them what to do. And they sort of thought, well this is logical. I’ve got a hundred tablets of Ativan here; I’ll just give them that. And that leads to a potential disaster because Ativan will not bring on death. It will bring on a deep sleep for a long time, but you will not die.
So anyways, mistakes happen. The answer of that, from my point of view of practice, is that we have a policy where any doctor that says that I don’t know how to do this, but I don’t mind doing it, we’ll call them up. And we’ll say, “Can we help you through the process?” And we have done that with a number of doctors who said, “Wow, you do that?” And we don’t charge a fee for it. We will just talk them through the process of what we’ve learned, and how this works. That could be the minimal amount of training that somebody needs. And at times, we’ll do this thing where I become the attending physician for that patient. The doctor who was hesitant becomes the consulting physician, which is just the confirm diagnosis and prognosis and mental capacity. So that doctor basically sits there and watches while I help the patient to die, and watches how we do the paperwork. And watches how we write the prescriptions and what the pharmacology is.
And then the next time, we’ll do it again together, but we’ll switch roles. And that doctor will be the attending and controlling physician who supervises the process, and I’ll be the consulting physician. And so we switch roles, and we’ve done two cases together. And then after that, they’re on their own. They’ve learned.
And so, I have found that if one by one, we can train doctors who are interested in doing this, and then have the experience. I think you and I both know this is the average doctor in the United States probably has maybe five to 10 of their patients die in a year. So if you think about that, if maybe one out of every will … Make a very high number, let’s say one out of every 500 people who dies wants medical aid in dying, that means the average doctor in the United States who sees five to ten patients a year, will only have maybe one request for medical aid in dying every three to four years.
And in my opinion, that’s not enough to get good at what you’re doing. If a doctor does one medical procedure every three or five years, they never ever have enough patients to really get good at it. And then that brings on the debate of who should be doing this. I can’t say I have the answer for that. I think that patients who have a lot of … I’m sorry, doctors who have a lot of patients who die, like oncologists, like maybe ALS doctors. They certainly would have enough patients die in a year, that they could get pretty good at doing this and they would know what they’re doing.
Mostly for me, I believe it should be hospice doctors. Because they’re the doctors who see the most patients die of anybody in the country, and they’re the best at seeing people die. They have access to nursing care; they have access to home visits, which are crucial. Because these patients are sick, and they can’t get to their doctor’s office for help. So I actually think this should be incorporated into the hospice model as one of the things that happens if you go into hospice you can get wonderful palliative care. You can get wonderful social workers, and chaplains. And if you want medical aid in dying, that’s just one of the things that hospices offer. That hospice offers.
And that’s the ideal. We now have, Bob you’ve got a hospice in San Diego, I know, where there’s a doctor who’s the attending physician. There’s your medical practice which models that. And I know that we have three hospices up here, where the hospice just if they get a request for medical aid in dying, they take care of it. It’s part of hospice care.
So that’s kind of where I go. I actually think, in some ways, it should be a specialty care. Because it’s much more complicated than most doctors think it is. It’s not as simple as writing a prescription, and you’re done.
Dr. Bob: Right. And that’s been my concern. And I’ve heard about some stories … And at the beginning of our experience, we discovered some things that we weren’t aware of. It was a learning process, and we discovered that different counties, medical examiners approach medical aid in dying differently. Certainly, at the beginning, they were unfamiliar with it. And there were some situations that occurred in patients’ homes that were very traumatic for families when the police showed up at 2:00 am in the morning and asked a whole bunch of questions because they just weren’t prepared and familiar. Different counties have different rules regarding the involvement of the medical examiner. Different hospices have different approaches.
There are so many nuances that, if you’re just doing this once in a while, you may actually be doing the patient and family a great disservice, if you’re not aware of these nuances. So I think as you’ve been doing, we’ve also been trying to guide and train some of the physicians who’ve expressed a willingness. One of the things that I love is when I have a patient who tells me … Who comes to me, because they want this to be done properly. And they know that they can trust us, and will get very intimately involved and provide a high level of support throughout the process. And they tell me that they don’t know if their doctor’s willing to be the consulting physician. Or to be involved in any way. They’re not even comfortable necessarily approaching it.
And we’ve had, as I’m sure you’ve done, we’ve had the opportunity to call and speak with these physicians. And help them understand more about the process. Help them understand what involved to be the attending physician, what it would involve to be the consulting physician, and to offer that support and to try to, I guess in a sense, convert. Because these are people, who may be open to it. They’re not morally opposed; they don’t have a religious opposition. They just aren’t familiar.
Dr. Shavelson: That’s right, that’s right. And I think convert is the right word.
Dr. Bob: I think that’s exciting for me when I get to speak to another physician and help them understand what the process is, and then become a resource for them, whether they’re willing to take it on and receive guidance and training and make this a part of their practice. Or just know that there’s a resource, there’s someone else to reach out to when somebody does bring up this possibility to them.
Dr. Shavelson: Right. You know, I think guys like me and you, we become ambassadors.
Dr. Bob: Exactly.
Dr. Shavelson: And that’s a significant part of my practice, and I love it. The things that, to move this to a very positive note if I may. When I started, it was disastrous. There was just an overwhelming need, and a lack of response because nobody knew what they were doing. When you look at the beginning of when this started up, it was hospices we’re against, and everybody I talked to said we don’t know how to do this. So we don’t agree with it. And over time, what’s wonderful to watch, is how patients have been the leading force in making this expand and work and get better every single year. And you see what I’ve seen with our hospices in Northern California. Is as they’ve started getting patient requests, they couldn’t just keep saying, “No.” Hospices are fundamentally a loving and caring and responsive organization.
And with so many patients asking for help with medical aid in dying or the way I phrase it better, to consider medical aid in dying, the hospices had to do something. And what we see now, is that something like 60 to 80 percent of the hospices in my area have now come over and say, “Yes, of course, we respond to requests from medical aid and dying. We’ll do referrals.” Or we’ll be the consulting doctors. Or we’ll refer to your practice if we can’t find that their regular doctors do that.
And so I have watched, number one, in terms of hospice care over two years, watched most of the hospices completely change their attitude, because of patients’ desires and the need of the hospice to respond to the patient’s autonomy requests in making their own decisions. And that’s been very gratifying to watch. As well geographically, I’ve now seen that there are areas of the state that we no longer have to go to in Northern California, because they have enough doctors in that area, and doctors that we know that if we get a call from Chico, we now say, “Oh, don’t use us. Call Doctor so-and-so. He’s in your area; he can be close to you. You’ll probably even know him.” And most of the time, they actually know the doc.
Dr. Bob: Because smaller communities than … Yeah.
Dr. Shavelson: Exactly. Exactly. So I’m gratified by the amount of progress we’ve made, and I’m shocked by how much more there is still to go.
Dr. Bob: Yeah. And you are a phenomenal ambassador. Every time I hear you speak, and it’s been several times now in various capacities, I’m inspired, I’m grateful that I get to be part of this world, alongside people like you.
Dr. Shavelson: Thank you.
Dr. Bob: No, absolutely. And Lonny, you actually not long ago went through your own medical challenge. And I’d be interested to know … I’d like you to share a little bit about that. I know you indicated that you’d be willing to do that. And I’m also interested in how the awareness that this was potentially, if it ever came to that, available to you. How that impacted you. Did you see it from a different perspective? Having been going through your own cancer journey?
Dr. Shavelson: Yeah, well. So just a year ago, I’m actually one year out of the end of my treatment now. So I had a cancer development. An [inaudible 00:40:33] cancer that this thing was located at the back of my tongue, not where I felt it. I found it because I had a swollen gland in my neck, and realized that it was unusual to have that gland in that space, even though it was tiny. So I got it quite early because I went immediately to the hospital. And being a doc, I can order up my own tests. Silly of me, but that’s the way I work. Walked in, and had the interventional radiologist that I knew to do a biopsy, get a piece of this thing. And it turned out to be a squeamish cell cancer that was metastasis from my tongue.
So I had a bunch of lymph nodes involved, and a primary cancer in my tongue. And took a rather, I went down to Stanford and had a rather hellish treatment, to put it mildly. I don’t want to scare people away from good treatment, but we did a significant amount of radiation and chemotherapy to knock this thing down. And it did, it worked. But during the six months of treatment, I became quite delusional, paranoid. I just got very, very, very sick. It was an awful experience.
Nonetheless, at the end of that experience and a very slow recovery. It’s surprising how long it takes to recover from that. I’m now well, and back to full speed and have a couple of long-term side effects from the chemotherapy, like a dry mouth and some toe numbness. But otherwise, I’m healthy and full strength and all that. And it’s now a year and a half after full diagnosis. And a year after the end of the last radiation treatment.
So how did that affect me? One, it scared the shit out of me. It made me feel vulnerable. I had been … This was diagnosed when I was 65 years old, thank god for Medicare. It was two months after I crossed the Medicare threshold. I was covered for all of this; it would’ve been a disaster even with my good health insurance. But it took away my feeling of having had a life of lack of fear. Just felt like things were going well in my life always. And suddenly it became, I’m the cancer patient.
So the vulnerability persists. And the feeling that bad news can happen at any time. You know, it’s not like I didn’t know that. I’ve been a … I was an emergency doctor for 30 years before I started that as I think you were, Bob. We don’t have to be taught that bad things can happen quickly. But they hadn’t happened to me, and I was feeling pretty good. And the feeling of vulnerability persists.
The feeling of medical aid in dying being available, well I’ve been a pill hoarder for the potentiality for this since I was probably 22. Again, I grew up in a family that confronted death very early, and we all had our hoard of pills in case anything would happen. So there’s no news in that for me. I like the idea that it’s freely available, and that I won’t have to do it myself.
But in terms of empathy, I think I gained a whole lot about being with patients and kind of knowing the information they want. And how truthful and calm the information has to be delivered, and it’s not like I didn’t know a lot of this beforehand. I kind of like to think I was a fairly empathetic doctor before this. But the tone is different. And I let all my patients know that I just came through this cancer experience. It creates this different bond with us. And I think that’s important. It’s a new tool. For me to talk to them from a patient perspective, as well as from their perspective, from the doctor perspective.
Dr. Bob: Yeah. I can just see that being so incredibly valuable, and such a point of connection with the patients. Because that’s what they want. I think in many cases, that’s what patients, that’s what people had been lacking, and are looking for in the relationship with a healthcare provider. Is just this sense of connection and understanding. And so knowing that you went through an experience, where you stared at your mortality and feared for what the outcome was going to be, suffered through the treatments. I think that was very comforting and probably endearing.
Having lost both my parents in a short time a few years ago to cancer, gave me a different degree in insight and empathy to what family members are going through. Which has really been a gift. But having not faced the illness from a personal perspective, I think that adds something to your toolbox. There’s no replacement for that. There’s no way to substitute for that. I know that given the choice, you probably wouldn’t’ have chosen it, to go through that. But as it turns out, it’s probably quite a gift for you.
Dr. Shavelson: Yeah. You know, the other part of that interestingly, and I haven’t thought this through as I probably should, is that the level of suffering that I went through was pretty intense. It wasn’t a fun treatment, to put it mildly. But I had the very, very high rate … there was an 85 percent chance of cure with this particular cancer that I had. So I had in my mind at least through the delusions that I was having in the really bad side effects of the chemotherapy hit my mind very badly. But even at all times, I knew that I was going to have a continued life. An 85 percent chance was pretty high.
So there was a real motivation to go through that suffering. That, I want to make very, very clear. When people use the term assisted suicide, let me differentiate assisted suicide from physician aid in dying. Had I chosen during my treatment when the suffering was worse, was most severe, to do a medical aid in dying, it would’ve been a suicide. And the reason is because I consider a suicide to be when you end your life and you can still have the potential to live. So when somebody has the potential to keep living, and then chooses and decides to end their life, that’s a suicide. However, when patients are having the kind of suffering that I was having, and they know that that’s the route to dying. That they’re close to death. And so they’re having the same symptoms that I was having, severe pain. My pain was so severe that I was on a really high dose of opiates. I couldn’t swallow, it was a terrible thing. My throat was closing up; it was hard to breathe. And yet I knew that I could live if I could just get through it.
The patients who are at the end of their lives, having symptoms like that, severe pain, hard to breathe. Existential angst. Those patients don’t know what I knew, which is that I could go on and live. They know that they’re about to die. And so the value of going through the suffering is diminished for them. There is no value because their death is imminent. Those are not suicides. Those are decisions about how they’re going to die, because they will die soon, no matter how they do it. That’s a very different circumstance.
I’ve come to understand that there’s a level of suffering you endure if you know the outcome is good. That’s very different than the level of suffering you endure if you know the outcome is not good. And those are really different things.
Dr. Bob: And that’s a fascinating conversation. And actually, I think I’d like to have a follow-up call podcast with you. Because this is something, I don’t think we can cover in the next few minutes that we have. But those nuances, those situations where a person could actually go on living if they make certain choices. That they may not be willing to make, because they understand the impact on the quality of life. And I speak predominately of neurological conditions. Circumstances where people are experiencing dramatic suffering. The actual timing and course of their illness may not be quite as clear as with an aggressive cancer. But the suffering is different.
Those are the cases that really require so much exploration, and a lot of time and … They’re difficult. Nothing simple about them.
Dr. Shavelson: Yeah, you’re talking probably mostly about the neurodegenerative diseases. ALS, multiple sclerosis, multiple strokes. Those are … Those neurologic diseases, when I walk into any other room for those patients, I take a really deep breath, because they are not easy. And you know you’re going to have to spend a lot of time with that patient, trying to figure out what’s going on. What’s the prognosis. Cancer’s easy. Neurologic diseases are hard.
Dr. Bob: And those people are looking for support, they’re looking for resolution. And a lot of times, it’s really … It’s not because they are trying to immediately get out of their suffering and their struggle. They know that things will change dramatically. And they’re also always terrified that they will lose the opportunity if they take too long. And I think that’s not just within our logic conditions. But there are so many nuances to this.
I think I’ve taken enough of your day. This has been fascinating. It’s really wonderful to listen. You’re so articulation and obviously passionate about this because you know it’s the right thing. But you’re also responsible. You’re taking a very responsible approach to it, recognizing that it’s a delicate issue. It’s a controversial issue. We know what our stance is, we would never want to try to force our position on anybody else. But I really, I feel a real kinship, and there’s a clearer I don’t know, a brotherhood of willingness to help people reduce their suffering even if it’s not the easy thing to do.
Dr. Shavelson: Yeah, and it’s wonderful to have you as a colleague, much appreciated.
Dr. Bob: Well Lonny, thank you. This has been wonderful. I’m looking forward to listening to it again, and I’m sure that there’s a lot of people who will get some great value out of listening to it as well. Keep up the great work, and we’ll be back in touch soon.
Dr. Shavelson: Thanks, Bob. Keep doing this.
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