A Call for Medical Aid in Dying: A Tale of Autonomy and Desperation

Not having access to Medical Aid in Dying can drastically increase suffering for dying people and their families.

This week I'll share a deeply personal and painful story about a dying man who wanted to have control over his death and what why he had to face it alone.

Helping healers heal others and themselves.

Delia

Delia Chiaramonte, MD

www.integrativepalliative.com

Coping Courageously: A Heart-Centered Guide for Navigating a Loved One’s Illness Without Losing Yourself is available here: www.copingcourageously.com 

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Transcript

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Welcome to the Integrative Palliative Podcast. If you care for the ill or aging, either at work or at home, this podcast is for you. You'll get plenty of tips for how to help care for the ill person and just as many tips on how to care for yourself. I'm glad you're here. Let's get started. Welcome to the Integrative Palliative Podcast. I'm Dr. Delia Caramonte, and this is a tough one for me today. This is a personal story, a hard story, a vulnerable story, but I think it's important. So even though I'm a little nervous about whether I can get through it all, I'm gonna do it. Here's a story I want to tell you. Well, let me start like this. The title of today's episode is The Call for Medical Aid in Dying, a story of desperation and autonomy. And if you've been listening to the podcast, you may have a hint that the person we're going to talk about today is my father. Now, I'm going to talk about him as though he were a patient just so that I can get through the story. And because I think it's more important to see him not just as him my dad, but as a representation of people and what they face and why I want to talk about the importance of availability of medical aid in dying. Okay, our patient was an 88-year-old man with a history of AFib, hypertension, and worsening stage four renal failure. The renal failure was thought to be due to uncontrolled hypertension. He lived alone in the same third-floor walk-up apartment that he'd lived in for 54 years. And he was a fiercely independent person. He was an engineer and also a sculptor, and went every year to Italy to sculpt in Carrera marble. His last trip to Italy was approximately eight months before this event. At that time, he managed to sculpt a 10-foot by 10-foot marble sculpture using power tools, but he did report that it was much harder this time than it had been in the past. The symptoms that he'd noticed in the past six months or so were progressive and included extreme and progressive fatigue, shortness of breath, difficulty concentrating, and he noted the increasing inability to perform the activities that gave meaning to his life, including doing tai chi, sculpting, writing, reading, and working at the local community garden. In the last two months or so of his life, it became increasingly difficult for him to get back up the stairs to the third floor once he left his apartment. So simple things like getting food and taking out the trash became more difficult. He had a few episodes upon going up the stairs where he became so short of breath and nearly passed out, lowering himself to the ground and thought that perhaps he was going to die right then. He had a primary care doctor, a cardiologist, and a nephrologist, and he followed up with them regularly. His physicians had told him that his renal failure was quite progressive, that his life was likely going to come to a close in the not too distant future. They asked him, would he want dialysis if his kidneys failed completely? And he said no. He talked about it with his daughter, who is a physician, and asked, What does that look like to get dialysis? And after hearing about it, he confirmed his opinion that he did not want to be tied to machines. He did not want to go to the hospital. He wanted to live his life fully until he was clearly declining. And then he did not feel the need to continue his life after that. So he was not interested in dialysis. His doctor had talked to him about hospice, and he was interested in the idea of hospice, had also talked about it with his daughter, was not opposed to hospice, but did not think that it was time for him to get hospice the last time it was discussed. He had the opportunity to move in with his daughter, which he declined. He had the opportunity to have aides come to the home to help him with his activities of daily living, which he declined. He spoke openly about death and dying with his daughter, who was a palliative care physician, and he made clear that he was not afraid to die, that he was not depressed, he was very happy with the life that he had lived, but that the life that he had lived and the person that he had been was markedly changing. And he now felt that his life had become very small and was no longer pleasing to him. And he recognized that he was going to die soon. And he wasn't happy about it, but he certainly understood that was the reality of it. And he was quite clear-headed about his firm intention that he did not want to become dependent or linger on this earth in a state that he found intolerable. He was not a religious person, he didn't believe there was anything after death, but he wasn't afraid of whatever that was going to be. He noted that in the next state over, medical aid and dying was available, and he wished that that option was available to him, but in his state, medical aid and dying was not legal. So he was not depressed, not impulsive, but simply recognized that the life that he had been able to live previously was no longer available to him. His death was coming reasonably soon. He did not want dialysis, and he simply wanted control over how and when he died. He began preparing, giving things away, and his apartment that used to be quite cluttered as an artist's studio became bare as he cleared out a lot of the stuff that he had been collecting over the 54 years he had lived in that apartment. His daughter and son-in-law visited him two days before his death and found him to be clearly declining, with less stability when he stood up, profound fatigue such that he couldn't even sit up anymore for a two-hour lunch, which was very unusual. His words were a little slurred, although he was oriented still fully. Again at that time, he spoke about the fact that he was so happy with his life, that he was grateful for the family. We discussed a legacy project that had been made for him by the family, a coffee table book of all his art, which pleased him very much. He expressed a hope that his family wouldn't be too upset when he was gone, and that he wished his body weren't failing as it was, but that it clearly was failing, and life was no longer pleasurable to him because of his physical limitations. Now I'm going to be a little vague in the next part of this story because I don't want to traumatize any of you or re-traumatize myself, but here's basically what happened. When we the family didn't hear from him for a day or two, I took a train several hours to his home to check on him, having a feeling that he may have taken his own life. And in fact, he took his own life. He tried first in a gentle way that clearly did not work. He tried again in a more aggressive way that also did not work. He then tried a third way, which was eventually successful, but unfortunately had physical trauma for him, clearly emotional trauma for him, and absolutely had emotional trauma for me who found him. So he died on his own terms after feeling trapped in this body that was failing. He died on his own terms, but at great personal cost to him and also to me. One thing that I think is of note that was pointed out to me by the detective who came is that there was something that he did to specifically minimize the trauma to whoever found him, which of course he knew would be me. And for that I am deeply grateful to him. But even the fact that he had to think that way breaks my heart. With all of my heart, I wish that he had had the option for medical aid in dying. Now let's talk about medical aid and dying for a minute. Medical aid in dying allows people who are terminally ill, like my father, and mentally competent and adult to request and receive a prescription for medication that they can self-administer to end their lives peacefully. It's not euthanasia, which is not legal in any United States state. The patient has to be able to take the medication themselves. The eligibility criteria for medical aid in dying is a little bit different state to state, but generally includes concepts like there has to be a terminal illness with a prognosis of six months or less, which my father certainly had. They have to be mentally competent, so they have to be able to make and communicate their own healthcare decisions, which my father could. Often there have to be several oral requests and or written requests with some amount of waiting in between. And this is, of course, to make sure that someone doesn't just have a sudden idea one day, but maybe by next week they would change their mind. My father had been talking for months as his body declined and he saw that there was nothing that could be done that he wanted, since he didn't want dialysis, and he had been to multiple doctors who basically said there's nothing we can do. His wish to not become dependent was consistent over months. So he would also fulfill this requirement of requests over time with waiting periods. Two physicians would have had to confirm eligibility, which I don't think would be a problem. And he has to be able to self-administer the medication. No one can do it for them. And that would also have been fine for my father. There are, of course, safeguards in place for medical aid in dying. So you need often a psychological evaluation if there's any concern about depression impairing decision making. In my father, that was not an issue, but that is an important safeguard because no one should use medical aid in dying if they're depressed, because we need to treat their depression first and perhaps they change their mind. No one can request medical aid in dying on behalf of another person. The person themselves has to request it and be able to self-administer. And many people apparently who get the prescription don't use it, although I'm quite certain that my father would have used it if he'd had the opportunity. So currently, medical aid in dying, as of the recording of this podcast, is legal in 10 United States and Washington, D.C., for example, Oregon, California, Colorado, Vermont, Maine, New Mexico. And some states are trying to get it legalized, other states have tried but faced opposition. And one thing that I think is important that I didn't realize until this situation happened is that when I, even as a palliative care doctor, have heard conversations around medical aid and dying and the lack of medical aid and dying in some states. The conversation usually goes something like: oh gosh, people in states that don't have medical aid and dying don't have the opportunity to make a decision about their own death and they have to linger until they die naturally and suffer, which is often true. But I honestly had never heard the conversation about it, also might force somebody who is going to make their own choice to take their own life in a way that is painful or emotionally distressing to both the patient and the family. I really had never heard it talked about in that way. But of course, now I see that it is not just that people who don't have access to medical aid and dying will have to die slowly without assistance. Some people may choose to self-administer aid and dying and take their own life in a way that is brutal and hard and distressing for them and for the family. And that is heartbreaking. And now I will probably become a zealot for access to medical aid and dying. So in states where it's legal, often you have to be a resident. So my father and I actually had discussed that just across the river, there was a state where it was legal, but you had to come with proof of residence. And he by the time he had thought about this, didn't have the time to make that happen. So because my father did not have access to medical aid in dying, he had to die alone. He had to endure physical suffering. He almost certainly had to endure emotional suffering. I endured and continue to endure emotional suffering. And this may seem small, but it's meaningful to me. His death certificate reads suicide. Whereas if people die after using medical aid in dying, their death certificate reads whatever their terminal diagnosis was. So his death certificate should read renal failure. But instead, it reads suicide. And that is heartbreaking to me. It's just heartbreaking to me. And maybe it shouldn't matter. I'm not even sure why it matters. But I think why it matters is because it tells the wrong story. Last week we talked about bearing witness to the person. This bears false witness to this person. He was not a suicidal person. He desperately wanted to be well and continue to live the life that he really enjoyed. But his body was failing. There was nothing anybody could do. And he didn't want to become dependent on his way to death. He wanted to live his life as long as he could live it as himself. And as that was clearly no longer possible, he wanted to take control over when it was time for him to go. So I see it as he did not commit suicide. He used self-imposed aid in dying. And perhaps from the outside that feels like semantics, but to the family member, me and my family, it actually makes a difference. So it's one other thing that is lost when you don't have the opportunity for medical aid in dying, is having your death be witnessed in a way that is consistent with who you are. He was a person who wanted autonomy about when he died and how he died. And he wanted medical aid in dying, but did not have access to it. And because of that, he suffered and we suffer. And that is totally unnecessary. So why do we need medical aid in dying? Why do people in all states need to have access to it? Because it provides autonomy to people whose bodies are dying, who want to have some control over the dying process. And because it can make the difference between a peaceful, supported death and a desperate, lonely, painful death. So what do we need to do as a society? First, I think we need to talk about death in general. We need to talk about the fact that people die, what it looks like when they're getting close to death. We have to not make it be secret and shameful and have conversations happen in the shadows. We need to just talk about it. It's part of our experience of being alive on this earth. And then we need to talk about medical aid and dying. And we need to have conversations like the one I'm having with you right now, because not having access to medical aid and dying is not benign. And maybe I knew that in my head before, but I know it in my soul now. And it is crucial that people whose bodies are declining, who are dying and we can't stop their dying, that they have access to medical aid and dying if they want it. It's crucial. It's crucial. My dad saw his physician two weeks before he died. Maybe if they had talked to him about death and his feelings, maybe he would have chosen hospice instead. I don't know. Maybe at least he could have felt validated that somebody else in the medical system could talk to him about this and talk to him about his options. But nobody talked to him about it, except for me. And it feels like a heavy burden. I really wish his doctors had talked to him about it too. So if you're a physician or a clinician who cares for patients who are getting near the end of life, please be willing to open this conversation with them. I know you can't fix it, and if you're in a state where there's no medical aid in dying, you can't magically make that be so. But you can talk to your colleagues about it, you can do grand rounds about it, you can talk to your patients about it, you can talk to your legislators about it. At its core, medical aid and dying is about dignity and about choice and about autonomy. And it's about how we honor the people that we care for near the end of their life. My dad made the best choice that he could for himself in an impossible situation. And I cannot help but think that if he had been in a different state, his last day would have been exponentially more peaceful. Please share this episode. Please keep talking about this topic. His situation is not isolated. There are many people like him that are suffering right now. Let's see if we can elevate the conversation and increase access for people who are at the end of their life so that they can have medical aid in dying if they want it. Thanks so much for being here. I appreciate you. I'll see you next week. This podcast is brought to you by the Integrative Palliative Institute. Visit our website, integrative palliative.com. There you can access physician and clinician training, well being coaching, free downloads, and other cool stuff. And feel free to connect with me on LinkedIn and share your favorite episode with a friend.