{ "version": "1.0.0", "segments": [ { "speaker": "Esme E. Deprez", "startTime": "1.1999999", "endTime": "12.24", "body": "It was the morning of March 12, 2020. I was in New York for work eating breakfast at a diner. And my dad texted me." }, { "speaker": "Esme E. Deprez", "startTime": "12.24", "endTime": "18.565", "body": "And when I looked down at the at the text message, it was an indication to me that he needed me to help him die." }, { "speaker": "Esme E. Deprez", "startTime": "20.725", "endTime": "23.605", "body": "My dad was named Ronald David Deprez." }, { "speaker": "Lauren Arora Hutchinson", "startTime": "26.564999", "endTime": "47.195", "body": "This is Esmé Deprez, and back in 2020 her dad was diagnosed with amyotrophic lateral sclerosis. You probably know it as ALS, a fatal disease. Over the past few years, it had slowly been shutting down his nerve signals." }, { "speaker": "Esme E. Deprez", "startTime": "48.875", "endTime": "70.14", "body": "He first noticed that his right arm and his right leg were getting progressively weaker and he was having more trouble maintaining his balance. By the spring of 2020, he had lost use of his right arm and effectively both legs, and his left arm was kind of starting to go. So he could feel the weakness coming on in his left arm. His line in the sand, so to speak, was when somebody else would have to feed him. He didn't want to have to live in that way." }, { "speaker": "Esme E. Deprez", "startTime": "92.06", "endTime": "107.534996", "body": "I don't want to give the impression whatsoever that that is a definitively negative state to find oneself in. There are plenty of people that are dependent on other people for many different things and that is just fine. My dad just happened to not be one of them." }, { "speaker": "Lauren Arora Hutchinson", "startTime": "109.534996", "endTime": "114.69", "body": "Before all this, she says her dad was amazingly active." }, { "speaker": "Esme E. Deprez", "startTime": "115.729996", "endTime": "140.365", "body": "He could recite William Wordsworth from memory. He ran 18 marathons. He was a self described Buddhist, even though he also had a hot temper. He could wire a house, he could tile a floor, he could bag a duck, he could skin a deer, he could do it all. And up until he got sick, he'd really been a man in in constant, constant motion." }, { "speaker": "Lauren Arora Hutchinson", "startTime": "142.25", "endTime": "151.77", "body": "He was a man in control. And so staring down death, he decided he wanted to die as he lived: on his own terms." }, { "speaker": "Esme E. Deprez", "startTime": "153.05", "endTime": "185.455", "body": "I've thought a lot about that journey that he took within himself as he was coming to grips with what was happening to his body. And I think it's totally understandable that when we get to this place where we are facing down a diagnosis of a terminal illness, we might not want to believe it, and we might want to opt for other explanations that aren't so dire. On the other hand, you know, there's, there's a reality that at one point, sooner or later, you have to face." }, { "speaker": "Lauren Arora Hutchinson", "startTime": "190.415", "endTime": "229.62001", "body": "I'm Lauren Arora Hutchinson, and I'm the director of the iDeas Lab at the Johns Hopkins Berman Institute of Bioethics. I've spent years working on stories where medicine and science show up in people's everyday lives. Today, a straightforward enough question with no easy answer. When you're terminally ill, should you be able to choose how you die? Specifically, we're going to explore a practice known as MAiD, medical aid in dying, through the experiences of Esmé Deprez and her father, Ron." }, { "speaker": "Lauren Arora Hutchinson", "startTime": "231.14", "endTime": "253.515", "body": "It's a powerful story about how in a moment your life can change. How you can be sent down a path, a long path, navigating ethics and the law, your own feelings and a choice you'd hoped you'd never have to make. This is playing god?" }, { "speaker": "Esme E. Deprez", "startTime": "263.0", "endTime": "285.04", "body": "He was first and foremost a maner through and through. He was industrious and hardworking and independent. And he grew up to a family that was very dirt poor and went on to transform himself into a renaissance man. He was a Harvard trained epidemiologist." }, { "speaker": "Lauren Arora Hutchinson", "startTime": "286.24", "endTime": "288.63998", "body": "But, as his ALS progressed..." }, { "speaker": "Esme E. Deprez", "startTime": "289.28", "endTime": "302.965", "body": "My dad really prized independence and freedom above all else. And for him, the prospect of becoming ever more dependent on other people for things big and small was really terrifying for him." }, { "speaker": "Esme E. Deprez", "startTime": "312.75998", "endTime": "331.295", "body": "So that's why I think that ALS was a particularly cruel disease for him to develop, and then a particularly cruel existence for him to imagine living, because it had run so contrary to the ideals by which he had lived his life." }, { "speaker": "Jennifer Eitingon", "startTime": "335.535", "endTime": "338.415", "body": "Every journey, every person is so different." }, { "speaker": "Lauren Arora Hutchinson", "startTime": "339.455", "endTime": "350.17", "body": "This is Jennifer Eitingon, a palliative care doctor. She cares for people at the end of life, focusing on comfort and quality of life." }, { "speaker": "Jennifer Eitingon", "startTime": "350.73", "endTime": "369.87", "body": "I get to learn what is most important to that person in that moment, who are the most important people in their lives, how they wanna spend their final days. I get to learn what level of discomfort is acceptable for them, what level of discomfort is unacceptable for them?" }, { "speaker": "Lauren Arora Hutchinson", "startTime": "372.03", "endTime": "386.955", "body": "Now Ron was not her patient and in fact she hasn't practiced in states where MAiD is legal. But it is legal and available in a small but growing number of them California, Colorado, Hawaii... And Maine adopted it back in 2019." }, { "speaker": "Jennifer Eitingon", "startTime": "388.47498", "endTime": "403.85", "body": "People's journeys are are very, very different. They are the ones who I want to be in charge. I'm not in their bodies. I can't feel their pain. It's it's tough." }, { "speaker": "Jennifer Eitingon", "startTime": "405.61", "endTime": "421.155", "body": "As far as medications, medications to treat pain, we do have quite an arsenal of medications But sometimes sometimes suffering is is intractable. Sometimes the tools that we have just aren't enough." }, { "speaker": "Lauren Arora Hutchinson", "startTime": "423.875", "endTime": "429.15", "body": "And in these cases, some patients decide MAiD is their best option." }, { "speaker": "Jeffrey Kahn", "startTime": "431.31", "endTime": "460.66003", "body": "So medical aid in dying, sometimes known by its acronym MAiD, is what it sounds like. It's aid in dying and helping someone to end their life. A lot of it is about the ability to to have that control and be able to do it if you feel like the time has come. It may not be so much about I want to die, but I want to be able to control the way I die." }, { "speaker": "Lauren Arora Hutchinson", "startTime": "462.82", "endTime": "478.64502", "body": "This is Jeffrey Kahn, a resident bioethicist and director of the Johns Hopkins Berman Institute of Bioethics. And he says that at the core of MAiD's legitimacy is a seemingly small, but in fact massive requirement for the patients." }, { "speaker": "Jeffrey Kahn", "startTime": "480.325", "endTime": "484.08502", "body": "They have to take the lethal dose themselves." }, { "speaker": "Lauren Arora Hutchinson", "startTime": "484.885", "endTime": "488.69", "body": "Not the family, not the friends, the patient." }, { "speaker": "Jeffrey Kahn", "startTime": "489.33", "endTime": "497.57", "body": "It has to be prescribed by a physician, but the physician cannot be the person who actually gives the dose." }, { "speaker": "Lauren Arora Hutchinson", "startTime": "498.92502", "endTime": "507.08502", "body": "And the the reason it isn't is because is it the patient themselves that takes the drug? Is that what the difference is then?" }, { "speaker": "Jeffrey Kahn", "startTime": "507.08502", "endTime": "523.99", "body": "Exactly. So, so in all of the states in which this is legal and Maine is is but one of now, I think we're up to 11 or 12 in the United States at this point, the patient always has to be the one to take the dose him or herself, which means they have to be capable of that." }, { "speaker": "Jeffrey Kahn", "startTime": "525.435", "endTime": "552.78", "body": "Just saying it that way, think should make people understand that it restricts those people who are able to physically lift it up and take it and and swallow it. So it's, it's distinct from and and not the same as euthanasia. So the distinction that's important I think here from both a kind of policy and practice and, and ethics perspective is that it's, it's helping somebody, but it isn't actually killing them outright." }, { "speaker": "Lauren Arora Hutchinson", "startTime": "554.22", "endTime": "575.95", "body": "In euthanasia, in places where it's allowed, death doesn't have to be imminent at all. With medical aid in dying, the person is already dying. Death is expected. Which creates a problem because you have to be dying, but you also have to be alive enough to take the drug and be considered in sound mind." }, { "speaker": "Jeffrey Kahn", "startTime": "577.79", "endTime": "594.215", "body": "Not everybody who faces an end of life decision is able to do that. It's it's set up in a way to limit the responsibility and agency really of the professional medical care community, so they're not engaged in killing patients." }, { "speaker": "Jeffrey Kahn", "startTime": "595.42004", "endTime": "620.635", "body": "But to allow individuals to exercise this sort of right of autonomy to control the end of their life, but in setting up the way we have, we really limited it to certain kinds of people who have certain abilities and required a kind of complicated set of steps in order to realize. It's interesting to point out that not everybody who gets the prescription ends up using the drugs to end their life." }, { "speaker": "Lauren Arora Hutchinson", "startTime": "621.755", "endTime": "628.82996", "body": "For some people, it is the comfort of just having this as a possible option as their life comes to an end." }, { "speaker": "Esme E. Deprez", "startTime": "630.91", "endTime": "660.02", "body": "I don't think it was clear from the very beginning, even with himself, that medical aid and dying was definitely going to be the way he died, but he certainly wanted to have it as an option. I had watched my dad's body decline too. I could see how miserable it made him. And so by the time he kind of broached that topic, I was devastated by all of it. And, of course, I wanted him to live forever, but I also felt relieved at some level that he could avoid the need to keep suffering." }, { "speaker": "Jeffrey Kahn", "startTime": "662.1", "endTime": "669.14", "body": "It's all well and good that people should decide for themselves how to control their life and the end of their life, but they can't do it alone." }, { "speaker": "Lauren Arora Hutchinson", "startTime": "670.955", "endTime": "674.555", "body": "These drugs have to be prescribed by a doctor." }, { "speaker": "Jeffrey Kahn", "startTime": "675.355", "endTime": "695.12506", "body": "And so the the other end of that argument is the medical community, members of the medical community, health care so physicians and nurses, some have a view that they were trained to save people, to preserve life, not to end life. So, I think that's the tension." }, { "speaker": "Jennifer Eitingon", "startTime": "699.84503", "endTime": "713.98", "body": "I think part of it is as simple as the Hippocratic oath tells us to do no harm. You know, it's not about... it's not about playing god because in some ways we do play god by putting people on ventilators." }, { "speaker": "Jeffrey Kahn", "startTime": "715.66", "endTime": "735.715", "body": "I mean, there are arguments about it's not our life to control. There are, I think, very well articulated religious perspectives that we're just stewards of our lives. They're not ours. It's, it's a higher power. It's God's will about when we live and when we die and not for us to end." }, { "speaker": "Jeffrey Kahn", "startTime": "737.15497", "endTime": "773.15", "body": "And for people who have that view, that's, that's fine, that that should be respected of course. And so this is a question of sort of what individuals get to choose versus what the public policy of a state or a country ought to be. A lot of it is about the ability to to have that control. There's all sorts of ways to think about this. People don't want to suffer, and and how to control the end of their life in a way that that minimizes that suffering." }, { "speaker": "Esme E. Deprez", "startTime": "775.39", "endTime": "799.63", "body": "What that meant was getting my dad qualified for Maine's medical aid in dying law, and that wouldn't be easy today nearly six years on, but it was particularly hard then. There were enormous institutional barriers to surmount. It was just so early in the development of the law. I would need to find out if his primary care doctor was really on board with helping him do this." }, { "speaker": "Jennifer Eitingon", "startTime": "800.51", "endTime": "812.935", "body": "There are certain rules about how long somebody has to wait to access the medication. They have to request it multiple times to ensure that they're certain about their decision." }, { "speaker": "Lauren Arora Hutchinson", "startTime": "813.895", "endTime": "821.74005", "body": "And so, on a practical level, how this all plays out for patients and their families? Well, it's really difficult." }, { "speaker": "Esme E. Deprez", "startTime": "822.30005", "endTime": "842.655", "body": "I made my living as an investigative reporter at the time and still do, and, and yet figuring out all of this would prove really, really hard. Those are features of the law. They're not bugs. They're there for good reason. So patients must have a terminal illness with a prognosis of six months or less to live." }, { "speaker": "Esme E. Deprez", "startTime": "843.695", "endTime": "878.53", "body": "They must have the mental capacity to make decisions. They must have the physical ability to self administer the drugs, and the willingness of multiple clinicians to sign off on all of the above. So barely anyone in the state had any idea about how the law might actually work in practice. So mostly, that left us really feeling our way alone through the dark. And then I would need to do things like make sure his doctor knew that there was just one pharmacy in the entire state of Maine that would supply the necessary drugs." }, { "speaker": "Lauren Arora Hutchinson", "startTime": "879.81", "endTime": "882.53", "body": "And there are reasons why this is so hard." }, { "speaker": "Jeffrey Kahn", "startTime": "883.89", "endTime": "908.55", "body": "I think what we want is for for MAID to be requested by individuals who who understand that it's available and they see it as a good option for them rather than something that should be encouraged. I mean, there are concerns that people will make decisions about using made for the wrong reasons, which would be, you know, financial would be on the list, social burden would be on the list." }, { "speaker": "Jeffrey Kahn", "startTime": "908.62994", "endTime": "943.82", "body": "So whether it's the cost of end of life care or just the cost of continuing to to live, or that you're a burden to yourself, to your family, to society. And that may be not just a motivation, but a strong motivation for seeking MAiD, and we don't want that to be the motivation. There's also a concern among the disability rights community that it's a kind of a message that you don't count, like you're you're not worth living anymore and why don't you just end your life." }, { "speaker": "Jeffrey Kahn", "startTime": "945.42", "endTime": "956.455", "body": "It's sort of a slippery slope argument that people will be encouraged to end their lives in a way that isn't about their self control, but rather some kind of external pressure." }, { "speaker": "Jennifer Eitingon", "startTime": "961.85004", "endTime": "989.17505", "body": "We are very comfortable prolonging life. We are much less comfortable I don't even wanna say... no, I do wanna say hastening hastening death. We are are we we have these inherent value judgments that that long life good, short life bad. And I don't know if that's right or wrong." }, { "speaker": "Jennifer Eitingon", "startTime": "991.26996", "endTime": "1020.17", "body": "I, I try in general to tease out my my moral value judgments that something's good and something's bad because everyone is so different. People have different preferences. And if I felt that death was bad, we all lose. If if I felt like death was losing a battle or, or a failure, then we all fail." }, { "speaker": "Jeffrey Kahn", "startTime": "1025.0499", "endTime": "1053.21", "body": "Some groups who have good historical reasons for not trusting the medical establishment. Black communities for instance in The United States may wonder whether they're being encouraged to do something not in the interest of themselves or their loved one. You can see how it walks up to a line about trust and whose interests are you representing as somebody who's offering something like MAiD." }, { "speaker": "Jennifer Eitingon", "startTime": "1060.005", "endTime": "1080.37", "body": "MAiD can never be a replacement for excellent end of life care. It shouldn't be in competition with providing extra policy support to providing excellent end of life care and palliative care. I think those two things can and should happen simultaneously." }, { "speaker": "Esme E. Deprez", "startTime": "1087.49", "endTime": "1117.11", "body": "We didn't know anybody who had done this and so it was just really kind of building the plane as you fly it. And so it was on that walk outside that he said at one point, he just said, okay, we're going to Deer Isle tomorrow. And it wasn't a question. It was an indication that, you know, this was happening and that he was ready." }, { "speaker": "Esme E. Deprez", "startTime": "1129.4049", "endTime": "1158.745", "body": "Deer Isle was my dad's favorite place in the world. And the minute I went to visit him there for the first time, I could immediately see why, and it immediately became my favorite place in the world, too. Deer Isle is island. It's located about halfway up the coast of Maine. Since 1939, it's been connected by a 2,000 foot sage green suspension bridge that's beautiful." }, { "speaker": "Esme E. Deprez", "startTime": "1158.745", "endTime": "1198.94", "body": "It rises high over the Atlantic. It's home to mossy pine forests and pink granite ledges and glacial erratic boulders and and and calm, quiet coves. It just feels like a a place that's very real, still very undiscovered, and just kind of idyllic. And then the last few days were really just, you know, we just tried to soak up as much time with him as we possibly could. I slept beside him on his last two nights in his bed upstairs." }, { "speaker": "Esme E. Deprez", "startTime": "1199.1799", "endTime": "1240.415", "body": "My husband and my brother had managed to get him up to the second floor by carrying him piggyback style up the stairs because by that time he couldn't walk. At night, I dripped blue drops of morphine into his mouth to ease his aches and help him sleep. And I helped him to sit up in the middle of the night and drink water in the darkness and adjusted his arms as he lay back down, and I emptied the bag of pee attached to his legs. So it was all it was all very intimate, which also made it odd, but also made it beautiful. So initially, he told us that Monday would be the day." }, { "speaker": "Esme E. Deprez", "startTime": "1240.495", "endTime": "1277.1699", "body": "And that morning, I opened my eyes to find my dad strained upward through the skylight directly overhead. And he said, sorry. He said, \"treat thoughts like clouds. Just just watch them pass by.\" And throughout that day, we all gathered around him in the living room and sorted through his old photos." }, { "speaker": "Esme E. Deprez", "startTime": "1277.17", "endTime": "1339.73", "body": "And we knew that the aid and dying drugs had to be taken on an empty stomach, but he kept he kept wanting to eat as the hours wore on. Soon enough, before we knew it, it was dinner time, and my husband Alex made my dad's favorite pasta, pasta vongole with clams. And the clams had been dug that morning from the from the flats just in front of front of my dad's house by a neighbor, and they had dropped them off. And so that night, we sat around the dinner table and drank good wine and and laughed and the specter of death hung over us heavily and yet, it just felt like we really had our dad back. Tuesday would end up being the day. A health care aide came by that morning to give him a sponge bath and a shave." }, { "speaker": "Esme E. Deprez", "startTime": "1339.73", "endTime": "1359.22", "body": "He he had maintained his appearance throughout all this. That was very important to him. He always wanted to wear a pair of real pants and not sweatpants, he always wanted to have a fresh shave. So he had that. And then, we spent a while reciting poems and listening to songs by Dylan Thomas and TS Eliot and Leonard Cohen." }, { "speaker": "Esme E. Deprez", "startTime": "1359.9401", "endTime": "1415.055", "body": "And then my dad asked us to meditate, to gather around in a circle and meditate to the voice of Ram Dass, who was a... he was a big fan of. So at about 4PM, he declared himself ready, and we wrapped him and ourselves in down coats, and we wheeled him outside to the front deck and looked at the ocean for a while. And then it started to drizzle, and we came back inside, and we settled him back into his brown leather swivel recliner. And he asked us to grab the the black and white photo of his mother and set it atop the wood stove that was right before him. And he looked out at the windows, at the water, and, and told us that he'd missed not skiing with us again." }, { "speaker": "Esme E. Deprez", "startTime": "1418.13", "endTime": "1467.295", "body": "When the others had stepped away, he told me he wouldn't be doing this if he felt his condition had left him any other choice. And it felt like an apology, and I told him I understood. The four drug mixture came in, in powdered form, and it was in two brown bottles, we added water and tripped them up and poured the cloudy slurry into a rocks glass with a Redhead canvas duck painted on the side and handed it to our dad. Our dad stared at the liquid for a few moments, and then he gulped it down. Pretty soon, he closed his eyes, and he fell asleep." }, { "speaker": "Esme E. Deprez", "startTime": "1467.295", "endTime": "1500.115", "body": "And for a while, it actually looked like he was just sleeping, just taking a nap. My brother and my husband and my daughter and I were gathered around him. There were many tissues being passed around. We were listening to Simon and Garfunkel and just kind of sitting with my dad holding vigil. And eventually, after about three hours, we noticed that there was no longer a heartbeat and that he had died." }, { "speaker": "Esme E. Deprez", "startTime": "1517.365", "endTime": "1569.62", "body": "I didn't want him to die ever, of course. Knowing that he could leave this world behind, as in control as he'd ever been, that brought me immense comfort. I also felt relieved and even grateful that he could even choose, you know, what he wanted to do instead of just succumb to the fate that ALS had handed him. Under the circumstances, I think and I know that we gave my dad the best possible death we could have, and that felt really hard in the moment and really beautiful and also like a gift. Frankly, it made me feel proud to, to be able to have choreographed for my dad the death he wanted." }, { "speaker": "Lauren Arora Hutchinson", "startTime": "1619.99", "endTime": "1624.3099", "body": "Coming up this season on playing god?" }, { "speaker": "Guests", "startTime": "1626.47", "endTime": "1646.93", "body": "Do we treat or not treat? If you had cancer that ran in the family, would you have a child? What is the responsible thing to do as a human being, as a woman, as a mother, as a wife, as a daughter, as a person? You know, put yourself in a position like that. What would you do? Should I do it? Do I need to do it?" }, { "speaker": "Lauren Arora Hutchinson", "startTime": "1651.9701", "endTime": "1678.0399", "body": "Many thanks to our guests in this episode. To Esmé Deprez and her father Ron for sharing their story with us. And to Jeffrey Kahn and Jennifer Eitingon. playing god? is a production of the Dracopoulos Bloomberg iDeas Lab at the Johns Hopkins Berman Institute of Bioethics. Made in association with Sea Salt and Mango Productions." }, { "speaker": "Lauren Arora Hutchinson", "startTime": "1678.68", "endTime": "1704.87", "body": "This episode was produced by Redzi Bernard with help from Lyric Bowditch, Irene Carter and Brian Ricker. Our executive editor is Tony Phillips. Music and sound design by Alexander Overington. iDeas Lab producer, Lyric Bowditch. Researcher, Brian Ricker." }, { "speaker": "Lauren Arora Hutchinson", "startTime": "1705.51", "endTime": "1730.41", "body": "Story editor, Simon Adler. Show Art by Barry Pousman and Shawn Carney. Our Production Coordinators, Leah Lord and Susan Snead. Our executive producers are Jeffrey Kahn and Anna Mastroianni. I'm Lauren Arora Hutchinson, host and managing editor." }, { "speaker": "Lauren Arora Hutchinson", "startTime": "1732.0901", "endTime": "1736.0901", "body": "Come back next week for more playing god?" } ] }