Podcast 5: A Physician Perspective

Transcript:

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[00:00:00] Dwight Welcome to Current Perspectives in Medical Aid and Dying. This is an ongoing podcast series, and today I have the pleasure of welcoming Evan Pulver, a family medicine doctor in Flagstaff, Arizona, and we’re going to be talking a little bit about medical aid in dying from a physician perspective. Doctor Pulver has finished her medical school degree at Mount Sinai School of Medicine in New York City and is now practicing with us here in Arizona. Welcome, Dr. Pulver.

[00:00:31] Evan Thank you. Thank you for having me.

[00:00:33] Dwight Let’s start off by letting our audience know a little bit about you growing up. What were some of the influences you had in those earlier years?

[00:00:42] Evan Yeah, so I’m from originally from Oregon. My mom was a social worker. My dad was a lawyer, and I had a really smart older brother. And in terms of deciding to get into medicine, I really wanted to do something that I felt would have a tangible good every day. And I became really interested in sort of the ethics and the care around it when a really good family friend got very ill with ALS or Lou Gehrig’s disease and because I grew up in Oregon, they had the option of access to medical aid in dying, and that was sort of the start of this journey. I was pretty young. I was in high school, I think.

[00:01:32] Dwight When your friend, your local friend got ALS?

[00:01:36] Evan Yeah.

[00:01:39] Dwight How did your family talk about death and dying in those days?

[00:01:44] Evan One thing that stands out to me is he made two things. He made a CD mix, burned CDs back when that was the hip thing to do, for his funeral. And the first song was Sexual Healing, he just was a good, goofy dude. His end-of-life cause was donations to the local library’s mystery shelf. He was just a really vibrant, funny, lovely guy. And he progressively lost a lot of function and he was really angry and that was really, really hard. And I think medical aid in dying gave him a lot of control and autonomy at the end of his life, and it allowed for his death to be coordinated with all of his family, being able to be there and for his family and his kids to sort of be able to take some time after he died because he decided to die over the summer so that they’d have a little bit of space before the new school year started. And that just seemed like a really fair and just way to go. And I think my family talked about that a lot.

[00:02:55] Dwight So he ended up using the medical aid in dying law in Oregon. You said an interesting combination of emotions that he had. He was both funny, he maintained a sense of humor, and yet at the same time, he was also angry.

[00:03:09] Evan Yeah.

[00:03:10] Dwight Can you speak to those? They seem seemingly contradictory emotions.

[00:03:15] Evan I don’t necessarily want to speak for him or his family, but my impression at the time was just how frustrating and disappointing it was to lose time with his kids. Also, a determination to make the best of the time that he had left and to really do as much work in that regard as he could. He was so proud of his son graduating from high school, but also simultaneously didn’t attend the graduation, just because the logistics of getting him out of the house were overwhelming and he didn’t want to make the day about him. So I think there was a lot of tension for him in terms of how to navigate the extent of his illness.

[00:04:05] Dwight So I think in the death and dying process, it’s pretty common to believe and understand that there is a conflicting slate of emotions that occur that really run the gamut of from hopefulness to despair to anger, frustration, and an ongoing sense of love and care during the dying process. Let me go back a minute and ask you about your lovely phrase, “tangible good every day. I wanted to do tangible good every day.” Is it frustrating as a physician in a case like your neighbor or your friend’s ALS? Some days you can’t do any tangible good, I would suspect. What’s that like as a physician wanting to do that but being hamstrung occasionally?

[00:05:00] Evan It feels really powerless and really helpless to know what you personally went through, to have the skills to try and help people and not be able to help. Those are definitely the harder cases and the harder days.

[00:05:19] Dwight I’ll bet. What did you do after medical school, then?

[00:05:25] Evan I really wanted to be a family medicine doctor. That was really…, it was important for me to be able to take care of women, it was important to me to be able to take care of kids, it was important to me to be able to take care of the whole spectrum of adult medicine. And the program that I went to emphasized and really focused on training doctors to be able to handle anything. They had a really strong global health focus. So from my graduating class, two of us went to Indian Health Services, one went to rural Appalachia, one went to do global health in India, one went to do global health in Haiti. We had lots of graduates who were involved in Doctors Without Borders.

[00:06:08] Dwight In family medicine. And it sounds like that’s a very holistic approach to the whole system of what you’re presented, not just the presenting problem of an ill child or something like that, but it goes beyond that.

[00:06:24] Evan Yeah, I mean, I think one of the things that’s cool about family medicine is that it is both a discipline; it’s an academic discipline within medicine, and it’s also a philosophy that the family is the primary unit that you’re treating.

[00:06:39] Dwight So you’re looking at things beyond the medical side of this to nutrition and potable water and some of the economic disparities between folks. And I think most people know that there are pretty severe disparities in the delivery of medical service, depending on the economics of the family.

[00:07:03] Evan Yeah, I mean, family medicine doctors are the only doctors that if you put them down in any given place, they increase the overall life expectancy of the population that they’re serving. There’s no other physician group that is able to do that because we need all physicians. This is not a dig at all. But if you’re a specialist, if you’re a nephrologist, if you’re a neurosurgeon, you’re doing really specialized care and you’re not really focusing on being able to practice population health.

[00:07:38] Dwight So if I remember correctly, you had a connection to Dr. Lonny Shavelson along the way. Tell the audience about that, if you will.

[00:07:49] Evan Yeah, I was just sort of lucky enough to happen into working with him. He had set up a practice just sort of exclusively doing medical aid in dying. And basically, in my third year of residency, which is your final year, I sort of set up an elective with him and was working really closely with him, doing medical in dying cases and sort of learning the medicine behind it, and the bedside behind it, and the clinical skills required. I think it’s to do it well and to do it right. I think it’s a very involved process from a clinician.

[00:08:24] Dwight You posed a contrast, if I heard you correctly, between in some of the institutional deaths that you witnessed through your residencies and the process of medical aid in dying. Could you describe one of those institutional deaths to give the audience some sense about what that’s like?

[00:08:47] Evan I think the first time it really resonated how brutal an institutional death can look like. And I don’t know a lot of the circumstances of this case, but was actually in my anatomy lab in medical school, and we had cadavers, which is a real gift from somebody to really show us what the human body can look like. And the woman who we had was clearly an older woman. And she clearly been really, really, really sick before she died. And I think she wanted us to see what that looked like. I mean, that was the process of her donating her body so that we could learn. And she had multiple broken ribs, presumably from a resuscitation attempt that may or may not have been successful. Her bowel had been resected so that it was so short we could barely find it. All of her female reproductive organs had been removed and she had a filter in the bottom of her body to prevent blood clots from flowing from her legs up to her lungs. And I just thought, “Wow. This woman was so terribly sick. She was so ill and she clearly spent the last probably significant portion of her life in the hospital. Ill without the supports and comforts of home.” And then I watched that play out so many times. New York can be a very anonymous city for patients, and I watched so many institutional deaths happen. People bring really, really sick family members to the hospital who they don’t understand, well, this is actually an end-of-life process. This is actually that illness is not an illness. This is the end of this person’s life; what can we do to make them comfortable. And for some patients and for some families, bringing them into the hospital is 100% the right thing. But most patients say they want to die at home. Most families want to support patients dying at home. But 80% of patients die in an institutional setting, whether that’s a nursing home or a hospital or an ICU. And that contrast with medical aid in dying, where people have control and autonomy over the circumstances of their death, such that over 90% of patients who choose medical aid in dying are able to die at home with their family, and the process just feels really different and a lot more peaceful and with a lot less anonymity. I think it can be very jarring to go into a totally anonymous space that gets cleared and cleaned out. You know, every time a new person walks in. And have that be the place for the most intimate life cycle moments of people’s lives and families.

[00:12:06] Dwight You’re drawing a very stark contrast between what I would call a bad death and institutional death. The example you gave to that woman and a good death which is surrounded by family without pain and anxiety, making your own full choices about your time of death. It’s an amazing difference, isn’t it, between those two types of death.

[00:12:32] Evan Yeah. And not every case plays out exactly according to that script, of course. There’s medical aid in dying at home that the patient wants and the family is accommodating. But it’s stressful for the family to sort of orchestrate and put on. And then there’s institutional deaths where that’s the right thing for the family. But I think as a general from my clinical practice, having seen this play out multiple times, I think that’s right. That that’s generally more often than not, medical in dying is a much more comfortable experience for friends and family, and institutional deaths can be really, really hard.

[00:13:16] Dwight I’m not sure you were aware, but I volunteered in Washington State to help families navigate the medical aid in dying law. And I’ve attended 71 deaths now and mixed the medication for patients. And one of the things that I was really struck by, I have always been struck by in that process, is the quiet, I would call it nobility, comfort, belief in the correctness of this decision to hasten one’s own death. It’s not traumatic generally, there’s the appropriate sadness and concern that the family has, obviously, because Uncle George is dying. But there’s a quiet certitude, if you will, to these decisions. Let me ask you a question about physicians, Dr. Powers There’s physicians like you who support and believe in the choice that a patient has about what they do at the end of life. And there are other physicians who do not believe in that. How do you account for that difference?

[00:14:27] Evan This is a question that plays into central questions of the profession. What is patient abandonment? What is benevolence, what is ‘do no harm.’ And I think really, really good doctors can land on either side of that question for medical aid in dying. We’re definitely seeing as this becomes legal in more and more places that younger doctors just are not finding this to be a big deal. But I don’t think the culture of medicine for anything controversial in sort of the regards of life and death, including women’s reproductive care and including other aspects of medicine. It’s always been a question of physician conscience. I think a larger and more important question is, okay, if I conscientiously object to providing this care, how do I still ensure that my patient gets the right to their autonomous decisions and that I think has to do more with making sure that physicians are comfortable and that there’s an expectation around referring patients for medical aid in dying who are interested in it, and then also making sure that institutions aren’t allowed to sort of say, you know, “I’m a big hospital and none of the clinicians in my network can provide this care” because I think that’s really what becomes limiting to patient access. The other thing for physicians to realize is that only one in 20 people who bring up medical aid in dying to their clinicians will actually ultimately use it. Or at least that’s sort of the case that’s been demonstrated in Oregon from some data we have there. And looking at those numbers, when a patient says, “Hey, doc, I’m interested in medical aid in dying,” and the doctor says, “I don’t do that.” It really shuts down a much broader conversation around what would choice and autonomy look like for me in the setting of a terminal illness? What options do I have to control how my body is deteriorating and what I can put in place from my family? Because most people who are asking for a prescription aren’t going to use it. That’s just how the numbers have shown and how they’ve played out. So what I worry about is that clinicians hear the question, but they don’t hear what the patient’s actually asking.

[00:17:15] Dwight They hear the question, but they don’t hear what the patient’s actually asking. Say more about that, please.

[00:17:23] Evan We know from family surveys and patient surveys that patients who are going to use medical aid in dying are predominantly choosing to use it out of a desire to have control at the end of their life. Having control at the end of their life does not need to be an end-of-life prescription. Having control at the end of their life is “My breathing’s a little bit more difficult because I have a lot of swelling and fluid collected. And if I elevate my legs a little bit, it’s going to actually make my breathing a little bit easier.” And some of that is just really basic support for patients that gives them instructions on how to manage things that they may not know how to do on their own.

[00:18:19] Dwight So there’s two things; a couple of things I heard that fascinate me here. One is obviously each physician needs to sort of sort out for themselves their own ethical, moral, and even in a sense, Hippocratic Oath interpretation about benevolence and ‘doing no harm.’ Making their own decisions about where they stand on this. But then there’s another factor that some of the Catholic-run hospitals actually prohibit their physicians from participating in medical aid in dying. You’re an Arizona physician, so how do you approach endof- life issues with your patients?

[00:19:02] Evan Well, firstly, I try and start discussing it early. I think every patient over age 65 should have a conversation with their doctor and a conversation with their family about, “Hey, like if I were to get really sick and I were not able to make medical decisions for myself, what kind of care would I want? Would I, if my body were to die, would I want to be resuscitated? And what would that resuscitation look like?” And I think starting those types of conversations early can be a… gives practice for the harder conversations for when things actually aren’t going well. And those conversations actually aren’t, sort of theoretical, they’re actually practical. In Arizona, what we know, is that in real life, for example, a CPR resuscitation works about 10% of the time, but on TV it works about 90% of the time. So when I’m talking to patients, I’m trying to really make clear expectations. You know, for example, if a patient has really advanced liver cancer that’s going to cause their body to die, and they say, “You know, I’d want to be if I was brought into the hospital and I was dying, I’d want to be resuscitated.” The thing that would have killed their body would be the liver cancer. And so resuscitating the body is not going to change the fact that the liver cancer has overwhelmed the body’s ability to continue to support itself. And so that patient, unfortunately, I’ll kind of speak to the patient and say, “You know, wouldn’t it be my recommendation, because it’s not going to change the fact that the liver cancer will overwhelm the body.” And patients are generally pretty receptive. I think they want to have realistic conversations about what to expect. I would say upwards of 95% don’t want to do medical care that’s going to be futile, that’s not going to ultimately support their end goal, whatever that end goal is. There are certain things that it’s very, very hard for patients to assess the risk and benefits of. For example, spinal surgery. It’s a very low-risk procedure, but it has the risk could be catastrophic. So it’s hard to sort of gauge that as a patient, like how do I weigh those things? But in terms of life and death decisions, people have thought about how they want to die and they’ve thought about what they want that moment to look like the same way they’ve thought about what they hope their childbirth will look like, and the same way that they’ve thought about what they hope for their grandkid’s wedding. They’ve thought about what they want their life to look like. And that includes what they want their death to look like. So I feel like often patients are just relieved to be able to speak to it.

[00:21:56] Dwight You start the educational process probably earlier than most people would think to do so. You encourage people to figure out the DNR status, advanced directives, and living wills. The orange form, also known as a post form. So you get those conversations going in a sense to get patients used to talking about it, so that it’s not during a crisis or emergency. Do you get any pushback from patients about that?

[00:22:24] Evan That’s fine, like I’m not going to bully anyone into talking to me about anything, but just normalize it by saying, “You know, this is a conversation I have with every patient who’s over age 65. I want to make sure that we as a medical system are going to do right by you. If you are ever in a situation where you can’t make decisions for yourself. We want to know what we can do to support you in those medical circumstances.” And patients are generally pretty receptive. Every once in a while someone will not want to have the conversation or they’ll say, “You know, I do want to have this conversation, but can I come back with my daughter” or whatever the thing is. And that’s fine.

[00:23:01] Dwight Let me talk a little bit about the political side of this. Arizona has been attempting to pass a law for 6 to 8 years, medical aid in dying law, and have not been successful. Do you feel any pressure, given your point of view and your approach to this, to be quiet about medical aid in dying, to not discuss this with patients? Is there any external kind of political pressure on you as a physician?

[00:23:30] Evan The way that I bring it up with patients is the same way that I bring up pretty much any medical problem that I discussed with patients. For example, you’ve got a urinary tract infection. One thing that people can worry about with urinary tract infections is that it becomes a larger infection. If that’s a worry for you, I’m here to talk about it. That’s a normal worry. And sort of similarly with end-of-life care. That’s something that never comes up for you. That’s great. Or if that’s something that you don’t want to involve me and that’s fine. But if it is something that comes up for you, I’m open to talking about it, and I am happy to have that conversation with you. I think that just allows patients to kind of come open-minded and curious. Because it’s not an option in Arizona, it’s not something that I bring up explicitly. When I practiced in California. I would sort of say, “Hey, we’ve got a number of options for how to think about end-of-life care. We can talk about aggressive treatment aimed at curative therapy, even in circumstances that may not work for you. We can talk about what deciding to just go more towards comfort care would look like for you, and what we can do to sort of keep your body comfortable as we let the disease take its natural course. And then we can talk about setting you up with medications that can support your death in the circumstances of your choosing. And I’m comfortable talking about any of those with you. Is there something that stands out to you?” But because it’s not legal in Arizona, it’s not something that I bring up. It’s not an option here.

[00:25:17] Dwight So what you do is, you invite people into the conversation in a very low-key, nonjudgmental manner. Talk about kind of it’s normal to talk about these things at this point in your life and your disease state, whatever it is. And it’s an invitation for conversation, which is non-threatening. The language and the tone you use is a non-threatening approach.

[00:25:44] Evan Yeah, and there’s lots of precedent for that in medicine. Generally thought to be standard of care for pregnancy, though, you know, is, “Hey, you’re pregnant. We’re here to support your pregnancy, whatever that looks like for you. There’s three options for every pregnancy. One is carrying the pregnancy to term, one is ending the pregnancy, and one is considering carrying the pregnancy to term and considering adoption at the end of the pregnancy. Which of those sounds most interesting to you?” And sort of similarly, I think. They’re starting with medical aid in dying to be sort of a non-judgmental option offering conversation that I think is going to at least hopefully become relatively standardized for patients to have options.

[00:26:28] Dwight And that would be to offer two or three four choices that people have at the end of life. And again, asking the question, what would be interesting to you?

[00:26:38] Evan Yeah.

[00:26:40] Dwight Dr. Pulvers, what am I not asking you that I should ask?

[00:26:45] Evan I also taught medical aid in dying, and I brought colleagues along on cases and really supported them through their own cases. And I think the one thing that I would say is that 2 for 1 for the people I taught, they felt like it was something manageable that they could do. After seeing one case, they were like, “Oh, this is what that is. That seems like something that I could do.” And then the other thing for my own patients and then the other thing is also to one of the physicians who I taught, some of whom went in very ambivalent to considering it for themselves and for their practice is, they kind of all walked away saying, “Wow, that was a much calmer experience.” I had one physician say, “Wow, I hope that’s what deaths look like in my family.” And I think it can be a really positive and rewarding experience for a physician to have the opportunity to practice medicine in this way. A lot of physicians feel very uncomfortable with the degree of death that happens in institutional settings and would like for death to look different for America. The thing I would say if I could sell this to other clinicians is just this is a real opportunity to try and to support patients in a really different way. And and I think you can make a big difference in the life of a patient and a family.

[00:28:20] Dwight What we have not said is very clearly is that this is a choice. We’re not advocating this for people in the sense of you should do this. It’s one of the options that a patient has at the end of their life. It would be nice to have this choice across the country. Right now, we have, as you remember, 11 states that have medical aid in dying laws. I really appreciate the time you spent today. Your knowledge and your experience and your ethics about this are most appropriate here in the state.

[00:28:53] Evan It’s an absolute joy to get to talk about this. One of my favorite, well, I don’t know how to phrase it, but one thing that I think medicine is evolving towards and I think is a good evolution. And so I’m grateful to have the opportunity to talk about it.

[00:29:10] Dwight Well, and it fits with your ethic of tangible good every day. That’s why you decided to become a physician. It’s a wonderful moniker and a motto, if you will. Thank you very much.

[00:29:23] Evan Awesome. Thanks Dwight.