Do We Have The Right To Die If We're Terminally Ill? - Diane Rehm | Modern Wisdom Podcast 288

1. 0:00 – 15:00

   It is the last…

   1. DRDiane Rehm0:00

      It is the last taboo. It is the one thing nobody relishes talking about. (airplane whoosh)

   2. CWChris Williamson0:12

      Why did you write a book about people's right to die?

   3. DRDiane Rehm0:18

      Understand, please, that first came the documentary, and then we were a year into the documentary, which I both narrate and I am the interviewer, when I decided to write the book based on the documentary. So, just to be clear, the documentary came first. The book is representing 25 or so of the 50 interviews that I did during the film process around the country. And I think, Chris, it goes way back. Um, my mother died at 49. I was 19. She had liver cancer. She was in terrible pain and begged to die, and nobody listened, and she suffered. My father died 11 months later of a broken heart. When my husband of 54 years, my late husband, John Rehm, and I were married, his father and mother were both alive, and then at age 72, his father, who was living alone on a farm in Pennsylvania after having had a career in journalism, had diabetic retinopathy. He could no longer see, and he took his own life. And then, at age 92, my mother-in-law, who had terrible back pains, terrible headaches about which nothing could be done that she was willing to do, for example, surgery, she took her own life. So, the idea of making a decision about your own life and when it should end has really been in my mind for a very long time.

   4. CWChris Williamson3:05

      This is a very uncomfortable topic for most people to discuss, isn't it?

   5. DRDiane Rehm3:11

      Most people would rather not talk about death. I can remember speaking at a church in Upstate New York, and there were about 350 people in the congregation, and I started out by saying, "How many of you are planning not to die?" And of course, there was this little titter within the congregation, a nervous titter. People really don't wanna talk about death. It is the last taboo. They would rather pretend it's never going to happen, as children do, but we, as adults, must reach a point where we are not only willing to talk about it, we need to plan for it so that we, if we choose not to, don't end up in a hospital attached to all kinds of tubes and oxygen and seeing/hearing nothing, just dying. Who wants to do that? Not I. I want to be in my own bed. I want to be in my own home with my husband, my children, my grandchildren with me, and I want to be able to say goodbye and tell them how much I love them, so I am planning ahead. And truly, Chris, the purpose of both the documentary and the book are to get people to talk about what it is they want at the end of life.

   6. CWChris Williamson5:18

      What is stopping people from having that kind of a death at home with the family around them? Why aren't people having that kind of a death at the moment?

   7. DRDiane Rehm5:29

      Too many laws in place. There are nine states within the United States, plus the District of Columbia, where I live, which do allow medical aid in dying, which is the focus of the film, the focus of my book. Those nine states and DC allow one...... to reach out to a doctor who will determine, truthfully, whether that individual is within six months of death. That has to then be confirmed by a second doctor. And in some cases, there has to be a psychiatric examination where no one other than the patient, him- or herself, can be there to ensure that there is no pressure coming from anyone in the family or friends, that that individual truly is ready to die, having reached that point in an illness where life is no longer tolerable. So, once that happens, then individuals are given the medication which they must self-administer in one way or another. And that is what I intend to do when my time comes.

   8. CWChris Williamson7:29

      What if you're not in one of those nine states?

   9. DRDiane Rehm7:34

      You're in trouble, because if you do not have the wherewithal of establishing residence in one of those states, as a woman about whom you may have read, Brittany Menard, who was a 29-year-old woman who had just married. She and her husband moved from California, which did not have medical aid in dying at the time, to Oregon, which did, because it was found she had a massive brain tumor and was going to be dead within six months, and she wanted to take charge of her own dying process. She was having horrendous headaches, plus seizures. She was at times simply not able to move, to do anything for herself. So, she and her husband had to pull up stakes, move to Oregon, establish residence, find doctors who were willing to help her. And in the end, on November the 1st, a date she had chosen, she wasn't sure whether she was going to carry through it on that date, but she woke up, had two massive seizures, and said to her husband, Dan Diaz, "Today is the day." Her mother, her stepfather, her dearest friends, her husband were all with her. She took the medication and she died peacefully, and that is what so many people cannot afford to do. How many people had the wherewithal to pick up and move from one state to another, establish a new residence? Think of the expense involved. In fact, Dan kept going back and forth to California trying to hold onto his job while they were in this process. So, you know, you have to make your choices, and Brittany became a world-renowned figure for having made the choice she did. You, in Europe, with the exception, I gather, of Britain, do not have medical aid in dying.

   10. CWChris Williamson10:52

       I don't know. I would be interested if anybody in the comments can elaborate on that. Do you know much about the European stance on this?

   11. DRDiane Rehm11:00

       I do, and I know that there are a number of countries, the Netherland, um, Belgium, um, several others.

   12. CWChris Williamson11:15

       Switzerland, I think, is one of them as well.

   13. DRDiane Rehm11:17

       Switzerland also have medical aid in dying, but they go even further to euthanasia. That is the active participant of the physician who administers the final dose of medication.

   14. CWChris Williamson11:42

       Is that the difference then? The difference between euthanasia and assisted dying-

   15. DRDiane Rehm11:46

       Exactly.

   16. CWChris Williamson11:46

       ... is whether it's committed by the patient or by the physician?

   17. DRDiane Rehm11:50

       Precisely. Precisely. And in the United States, it is illegal to have the physician administer that final dose. Now, having said that, Chris-... for years under the table, as it were, many doctors have been given, giving to their patients, their patients who may be close to death, that extra dose of morphine that they know will take them over the edge. But they don't acknowledge that. What we have here in this country, one in five people are eligible because of the state in which they live for medical aid in dying. Now Oregon is trying to make some changes to their laws. In the case, for example, of someone who may have ALS or Lou Gehrig's Disease, who has no muscular strength whatsoever, and through a technicality which allows that person to lift an elbow and have that descend to begin, because people with ALS cannot swallow, they begin a rectal infusion of the medication. So, it is a very difficult topic about which to speak, but I hope that speaking with you and having your listeners hear the importance of talking with your family, talking with your doctor, talking with your children about what it is you want at the end of life is so extraordinarily important. And mind you, I believe that if you want God to be the only decider, I support you 100%. If, on the other hand, you want everything medical science can provide, I support you 100%, and I

2. 15:00 – 30:00

   It definitely seems like…

   1. DRDiane Rehm15:00

      ask that you support me as I make my own decision for what I want at the end of life.

   2. CWChris Williamson15:13

      It definitely seems like there are some really particular quirks and odd ethical dilemmas that we're coming up against here. For instance, uh, somebody with ALS being able to move their elbow and push down on a plunger thing, like, what, what really is changing here? What is the difference between the physician doing it and the patient doing it? Is it a moral and ethical question? Is it a question of professional care? Is it something to do with who is left culpable? It, it also seems totally crazy that someone can try to take their own life if they're able-bodied but can't be assisted in taking their own life through the state, and that, wh- where's the difference between murder and a physician? Like, one of the questions, what, what are the justifications for not allowing this to go forward? What does the other side of the aisle to your stance say are the reasons for this not being allowed to happen?

   3. DRDiane Rehm16:18

      There are several, and we talked with a number of them, both for the film and in the book. First and foremost, the Roman Catholic Church is the largest opponent to medical aid in dying. They argue that life is sacred in whatever form it exists, and therefore must not be ended in any way other than through God's will. Then there are physicians, older ones for the most part, who continue to believe that physicians should be in control of what that patient does or does not do. So there is a large portion of the medical profession in this country who do not support medical aid in dying. They believe that their function and their mission is to do everything they can to keep a patient alive, even sometimes when keeping them alive does more harm to that patient than letting them go. Then there is the disabled community which is split.

   4. ... some argue that they fear they will be set apart and somehow put to death against their own will, and thereby, they do not support medical aid in dying. And then, there are those who are disabled who believe they've been left out of the law because of this notion of self-administration, which is what the Oregon law is trying to get around with this elbow release. Finally, there is the African American community which is so mistrustful of the medical community because of incidents. For example, like where African Americans were deliberately infected with syphilis as part of an experiment. So, I spoke with a wonderful African Methodist Episcopal pastor who said to me, "Diane, if you can show me that this method would be carried out fairly, and honestly, and with trust, I would support you. But right now, that trust on the part of the African American community is simply not there." So, that's where the oppositions are coming from.

   5. CWChris Williamson20:21

      What do the lawyers say about this?

   6. DRDiane Rehm20:27

      The lawyers are secondary. The lawyers really are secondary. For example, I've already communicated with my own lawyer, with my own doctor, with my children, with my husband, my wishes are topmost and remain that way.

   7. CWChris Williamson21:00

      Do you think that there's an ethical difference between stopping f- stopping from keeping someone alive and giving someone something which makes them die? I think you talk about the difference of pulling, pulling the, the tube out versus administering a drug.

   8. DRDiane Rehm21:18

      Um, there are many people who decide, as my late husband did, to stop all treatment, all medication. In fact, he was suffering from extreme Parkinson's disease. He reached a point where he could no longer stand on his own. He could no longer feed himself. He could no longer bathe himself or toilet himself. He said, "I have lost so much sense of dignity, and if I continue to live on in this way, I will lose even more and I'm not willing to do that." And so, he took what is called the VZ Method, voluntarily stopping eating and drinking. It took him 10 long days to die without water, without food, without medication. It's not an easy way to go, but he was in a nursing home in Maryland. And of course, Maryland did not then, and does not even now have medical aid in dying so he had no other recourse. Now, the question you ask about stopping treatment, many people do that and go peacefully, and that may be the choice that those without medical aid in dying opt for. But in some Roman Catholic hospitals, that's not allowed. So, you've got to be careful where you end up. Truly.

   9. CWChris Williamson23:53

      You talk about a story. A lady, I think, maybe has a heart attack and then gets angry when she's brought back to life. Can you tell us that?

   10. DRDiane Rehm24:04

       She had all her documents so clearly evident in her apartment saying, "Do not resuscitate under any circumstances." But when...

   11. ... her neighbor found her unconscious. She called 911, and they got her to, uh... When you call 911, they are legally obligated to resuscitate you, to attempt or to resuscitate you, and that's what happened to her. And she was furious when she woke up and she was still alive.

   12. CWChris Williamson24:55

       (laughs) I don't know who's to blame there. I don't know whether it's the fault of the neighbor, whether you need to kind of have, like, a laminated card that's on a, on a lanyard around your neck at all times or something like that.

   13. DRDiane Rehm25:10

       Uh, but if you call 911, you've made the first wrong step in a series of wrong steps, which is why, Chris, around the United States we now have the development of what are called death cafes, where people come together, neighbors, church members, people who don't even know each other, to talk about what they want at the end of life. But those neighborhood groups are so important, because it means that your next door neighbor knows what you do or don't want at the end of life. The fact of the matter is that talking about death clears your own mind, helps you focus on what it is you want or don't want, and helps you to move forward knowing that you've taken control of your own life and how it may end. I mean, for those who have no recourse, I mean, just think how horrible it is to find someone you love dead of a gunshot wound to the head, or the stomach, or wrists slit, or however one in desperation carries that out. Now, many people say to me, "Well, what's the difference between medical aid in dying and suicide?" If one wishes to die and makes that decision without being sick but simply doesn't want to live anymore, that's a choice that that person makes to end his or her life. I spoke with a 37-year-old mother who had breast cancer that had gone throughout her body. She said, "Diane, if I had my way, I'd live until I was 90, but I don't. I know I'm going to die, and I don't want my 13-year-old son to see me suffer at the end." It's a terrible thing to watch someone suffer as they die. And so she was one of the first who got herself lined up on that list as having expressed her desire for medical aid in dying even before it became legal so that her doctor would know exactly what she intended to do. Now, as it turned out, she decided at the end, even though she had the medication right there with her, not to use it. And that's the irony here. One-third of the people who ha- have received the medication to use for medical aid in dying don't use it. Only two-thirds of all the people who've been given this, who've been cleared by their doctors to use this, ultimately do. Don't ask me why. I mean, they made that decision. But what they are saying is, "I feel comfort, I feel

3. 30:00 – 45:00

   I think you're right.…

   1. DRDiane Rehm30:00

      at peace, because I have this medication that I know I can use if the suffering becomes more than I want to tolerate."

   2. CWChris Williamson30:17

      I think you're right. I think most of it is to do with the peace of mind, the feeling of being in control.... and what people don't want is to feel like their destiny is no longer theirs to choose. I think one of the challenges that we have when having this conversation is that as someone who is well and healthy, if you haven't meditated for quite a while on what it's like to die, and if you haven't seen somebody, as you have far too many times, uh, suffer at the end, you can't really envision a world in which you wouldn't want to live for longer. Everybody just thinks, "Well, I'm just gonna keep on going. Why would I want to die sooner? Obviously life is good." And I think that realizing there can be a level of discomfort that you can reach in life where death is preferable to life, realizing that straightaway is something which I, I don't really even know if I'm there. I'm an only child with two parents, um, both of whom are still alive, so for me I've never had to face any sort of death up close. Like, loss of pets and stuff like that, but that's it. So for me, I don't know what that's like, but I can completely see why that would be the case, wh- how you could get yourself to a stage where the person is suffering and, and so are the people around them as well, right? Your family are suffering watching you suffer and you're suffering watching them suffer watching you suffer, so it, it ends up being a, a big spiral. Given the fact that ... I mean, is this a conversation you should just have at the first stroke or the first heart attack? Like, is that the, is that the note when you're supposed to go, "Well, we'll start talking about it now"?

   3. DRDiane Rehm32:03

      That's too late. That's too late. How old are you, Chris?

   4. CWChris Williamson32:10

      32.

   5. DRDiane Rehm32:11

      And how old are your parents?

   6. CWChris Williamson32:14

      60s.

   7. DRDiane Rehm32:15

      Have you ever had this kind of conversation with them?

   8. CWChris Williamson32:21

      Never once.

   9. DRDiane Rehm32:25

      And why not?

   10. CWChris Williamson32:28

       I don't know. I mean, when you get to see your parents, it's usually not the first topic on the agenda. It's, "How have you been?"

   11. DRDiane Rehm32:36

       Are they?

   12. CWChris Williamson32:36

       "How's the dogs? What's happening with work? Oh, I've got this new thing going on." It, it doesn't tend to be how you open up the conversation, and, um, I've had a couple of conversations with r- with my mum with regards to the sort of service that she wants, but in terms of end of life, which actually in terms of her experiences and everyone else's experiences, far more important. Like, the, the type of casket that you're cremated in matters far less than the way that you spend your last few months.

   13. DRDiane Rehm33:12

       So what would it take for you to go from talking about what kind of service she wants at the end to what kind of process she would want at the end of her life?

   14. CWChris Williamson33:38

       I don't know. I ... A question I have for you is, is it the job, is it the job of the person to bring up the, the son, daughter, or is it the mother, father? Is it their job?

   15. DRDiane Rehm33:53

       It's anybody's job. Anybody's job. For example, a parent might say, "You know, I'm getting a little older. I'm 60 now. I'm not gonna live forever, so I've been thinking about this whole issue of what kind of ending I'd like. Do I want to go to a hospital and get on that turn wheel of one medication or one treatment or one radiation after another should I come down with something as lethal as cancer? Or do I just want to live out the best of my days toward the end of my life with my family in my home in comfort?" Or a child your own age might say, "You know, Mum and Dad, I talked to this woman the other day all about medical aid in dying that's not really legal here in the UK but is in other parts of the world, including in parts of the US, and it got me wondering about my own life and what I might want at the end of my life, and I'm wondering whether you, my parents, have thought about what you'd like at the end." And mind you, it's not one discussion. It's many discussions, because the first reaction on the part of your parents might be, "Oh, why do you wanna talk about anything so dreary or negative or depressing as that?"... and the response might be, "Well, because I know eventually it's going to happen. It's gonna happen to all of us, and I really would like to know what you would like in your own end, uh, life thinking." And if that conversation doesn't take off in the first time you raise it, I promise you after you leave the house they'll be thinking about what you said and what you've asked and maybe start thinking about it themselves. I used to say to my mother and I think it's because deep down I knew she was sick from the time I was five years old. I used to say to her, "Mama, I want to die before you. I don't ever want to be without you." And, you know, in my own mind I think I had a feeling I was gonna lose her early but even until she was in that hospital crying and begging to die she had never talked about it. She had never talked about it, and that was sad to me.

   16. CWChris Williamson38:23

       I suppose the discomfort, the inertia that people need to get over here is do I want to deal with the pain and the awkwardness of having this conversation with somebody that I care about, and I don't know how it's going to necessarily make them feel, and it's going to remind them of their mortality, and maybe they gonna think that I'm trying to get rid of them. Maybe they think I'm after the inheritance. Um, the choices between that discomfort or the discomfort of end of life complications of stuff not happening, of things not being, being done correctly. I imagine that the vast majority of people no matter how compelling your argument is here, our denial of death is so strong. We, we don't think that it's going to happen, not to me, not to them, not to my mom, not to my dad. We push it off an- and we sweep it under the rug. I imagine that the vast majority of people get a fairly rude awakening upon the first phone call that mom's had a X, heart attack, stroke, whatever fallen down the stairs seriously, dads forgetting things. And we've got early onset Parkinsons, we've got Alzheimer's, we've got dementia, we've got whatever it might be. Um, and I imagine that most people would then begin to think about this conversation. Like, that's pulling the starter pistol. It's like oh okay right now we're into, we're into end of life consideration period. That's, that's when we do it. But you're saying that a better approach is to do that when everybody's fit and healthy and death's not at the door.

   17. DRDiane Rehm40:06

       Exactly, right. And it sounds as though as an only child you are a faithful son who may be willing to brave that first rejection of the topic. But know that at some point you're going to be faced with it as is every single person who's listening to this program and therefore doesn't it make sense to want to know and to hear what it is? Your parents may not even have thought about it themselves. They may have, you know, they're having a good time. They're in their 60s, they're healthy, they're enjoying life, they're enjoying their son. They're traveling. They're doing whatever they want to do and that's what John Rehm and I were doing for so many years, for 54 years but I first realized... I mean we had both talked a lot about (dog barking) we had both talked a lot about death because of what I've said to you earlier and we had each told the other that we would help the other die peacefully. Um, and yet when the time came I could do nothing to help him and as a matter of fact because I am known in this country because of-... the radio program I hosted for nearly 40 years. Um, the doctor warned me and said, "Diane, don't do anything that would help him end his life earlier. Don't do anything, because you would really be in trouble." And so, at the end, I could do nothing. But early on, I had heard that shuffle in his walk. He was a strapping 6-foot-tall. He had worked in his father's rock quarry. He had big shoulders. He was built like a football player. And watching him disappear physically, to go from 175 pounds down to about 120 pounds, I mean, pretty painful, pretty painful to watch. And had there been that law in Maryland, I know John would have used it, because when he talked to the doctor about his wishes, he said to him, "I want you to help me die." And the doctor said, "Legally, ethically, morally, I can do nothing here in the state of Maryland, and the only thing you can do for yourself is to stop eating, drinking, and taking medication." And that's how he took it into his own hands.

   18. CWChris Williamson44:45

       It's such a-

   19. DRDiane Rehm44:46

       Savage.

   20. CWChris Williamson44:47

       ... savage way-

   21. DRDiane Rehm44:47

       Like-

   22. CWChris Williamson44:47

       ... to finish a life. Like, it's, uh, watching that happen, enduring it, both from the inside and the outside, is just, I, you know, that... As, as uncomfortable as the conversation

4. 45:00 – 51:38

   The documentary is going…

   1. CWChris Williamson45:00

      may be for everybody that's listening who's thinking, "Uh, should I bring this up with mom and dad? I've got this sense that I might, it probably m- might be a good idea but also it's gonna be really awkward." Imagining that, imagining watching someone that you love go through a week and a half fasted, water fasted, with no medication, whilst going through a ton of pain from their physiology and then that getting worse over time. I mean, it's about as stark of a contrast to the good death that you described earlier on which is in your house, in your bed, surrounded by your loved ones. Um, yeah, it really does, it really does highlight why it's an important discussion to have. If people want to find out a little bit more, or if there was a website that they wanted to show their parents to give them a little bit more information, where would you tell them to go?

   2. DRDiane Rehm45:51

      The documentary is going to be released on PBS Worldwide in mid-April. And, of course, you have my book, but there is also an organization here in the United States called Compassion and Choices which provides information on even how to have the conversation. Um, there are all kinds of information out there. There's another organization called Death with Dignity that came out, uh, the Hemlock Organization, founded many, many years ago which, in fact, included a prescription on how to take one's own life. But that is no longer available because the medication prescribed is now off the market. And so, having that conversation with your family, with your doctor, with your friends, with your neighbors, is really important. Chris, I'm fascinated with why you, personally, were interested in talking to me.

   3. CWChris Williamson47:43

      I think that meditating on death and thinking about what happens at the end is one of the best ways that we can remind ourselves why life's worth living. It's something that the Stoics did, memento mori, to meditate on death. Um, and increasingly, I like to do things, I like to have conversations on this show which push people into areas that are uncomfortable, because there's not very many places that you go now that cause you to be uncomfortable. The way that TV shows and our information consumption diet is curated now, is precisely done to feed you things that make you feel good, that they confirm your existing belief structures and the architecture of what your life is already built around. And-... I have conversations on here with people whose views I don't agree with all the time. But, I think that it's incredibly important for people in 2021 to have their minds exposed to stuff like that. And also, sitting through a conversation like this for 50 minutes and feeling that discomfort, sitting with it, learning to sit with the discomfort of things like this, I think is such a valuable tool. Um, the same way as looking at the night sky, it makes you feel small and insignificant. It makes you, it reminds you that, y- you know, your time on this planet is incredibly limited. It's this brief window of consciousness book-ended by two eternities of nothing. And, really, it's only upon working out that this is an inevitability, as you said, "Put your hand up if you don't intend on dying," um, realizing that this is an inevitability reminds us that we need to find joy today. Not tomorrow, not next week, not when I've got the new car, the new job, the new house, not when the pandemic's over. That joy has to be found today. And, I think, although talking about death every day might be a little bit much, I've-

   4. DRDiane Rehm49:54

      (laughs)

   5. CWChris Williamson49:54

      ... I- I- I fear that we've probably overshot that, uh, and we don't talk about it enough. And hopefully today, with this conversation, we'll have opened some people's eyes to this and spurred on some conversations that'll make, you know, it could make hundreds of people's lives, thousands of people's passings more comfortable.

   6. DRDiane Rehm50:14

      Well, Chris, I can't tell you how much I appreciate those sentiments, because it is the last taboo. It is the one thing nobody relishes talking about, (laughs) and most people would rather not do it. And, I commend you, a healthy 30-year-old, for being willing to take on this subject and converse with me about it. Maybe I planted a seed in your mind, and you'll see where it goes. (laughs)

   7. CWChris Williamson51:05

      Diane, thank you. Uh, link to When My Time Comes will be in the show notes below if anybody wants to go and check that out. I'll also find some of the other links that you've put in, you mentioned earlier on, and they will be there as well. Diane, thank you so much for today.

   8. DRDiane Rehm51:19

      Chris, thank you so much.

   9. (ambience music) Love wins. Yeah. Oh.

Episode duration: 51:38