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

Episode Date: February 27, 2021

Diane Rehm is a former radio presenter, producer and an author. Talking about the end of life is uncomfortable, but watching someone you love be forced to live on through pain is even worse. Diane has interviewed hundreds of people on the topic of assisted dying from Doctors to Priests, terminally ill patients and ethicists. Expect to learn why Right To Die Laws are so complex, problematic and applied differently across the world. what the difference is between euthanasia and assisted dying, how to broach the subject with someone you love and much more... Sponsors: Get 50% discount on your FitBook Membership at https://fitbook.co.uk/modernwisdom (use code MODERNWISDOM) Extra Stuff: Buy When My Time Comes - https://amzn.to/3uBEFRd Follow Diane on Twitter - https://twitter.com/drshow  Get my free Ultimate Life Hacks List to 10x your daily productivity → https://chriswillx.com/lifehacks/ To support me on Patreon (thank you): https://www.patreon.com/modernwisdom - Get in touch. Join the discussion with me and other like minded listeners in the episode comments on the MW YouTube Channel or message me... Instagram: https://www.instagram.com/chriswillx Twitter: https://www.twitter.com/chriswillx YouTube: https://www.youtube.com/ModernWisdomPodcast Email: https://www.chriswillx.com/contact Learn more about your ad choices. Visit megaphone.fm/adchoices

Hello friends, welcome back. My guest today is Diane Reem and we're talking about the right to die. Discussing the end of life is pretty uncomfortable, but watching someone who you love before to live on through pain is even worse. Diane's interviewed hundreds of people on the topic of assisted dying from doctors to priests, terminally ill patients and ethicists. So today, expect to learn why right to die laws are so complex, problematic, and applied differently across the world. What the difference is between euthanasia and assisted

dying, how to broach the subject with someone you love, and much more. This is a bit of a change of pace today, but it's a conversation that I didn't even know existed and is obviously something that we're all going to have to face. One of the few certainties that we have is that we're all going to die and the people around us are going to, too. So I hope that this conversation frames what is an inevitability in a new light and hopefully gets you thinking in a way that maybe makes things a little bit easier. But for now, it's time for the Wizen Wonderful, Diane Reem. Diane Reem, welcome to the show. Thank you.

Good to be with you. Why did you write a book about people's right to die? 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 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. My mother died at 49. I was 19. She had And nobody listened and she suffered. My father died 11 months later. I've a broken heart.

When my husband of 54 years, my late husband, John Reame, and I were married. His father and mother were both alive, and then at age, I need to, 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. 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. This is a very uncomfortable topic for most people to discuss, isn't it? 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. It 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 a documentary and the book are to get people to talk about what it is they want at the end of life. 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 home with the family around them. Why aren't people having that kind of a death at the moment? Too many laws in place. There are not in 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, 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 a 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. What if you're not in one of those nine states? 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 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 residents, find doctors who were willing to help her. And in the end, on November the first 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, Dandias, 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 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 on to 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. I don't know. I'll be interested if anybody in the comments can elaborate on that. Do you know much about the European stance on this? I do and I know that there aren't a number of countries that have the land, Belgium, several others. Switzerland, I think, is one of them as well.

Switzerland also have medical aid in dying, but they go even further to euthanasia that is the active participant of the position who administers the final dose of medication. Is that the difference then, the difference between euthanasia and assisted dying is whether it's committed by the patient or by the physician? Precisely. Precisely. In the United States, it is illegal to have the physician administer that final dose. Now, having said that, Chris, that final dose. Now, having said that, Chris, for 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 loss. In the case, for example, of someone who may have ALS or Lou Garrix disease who has no muscular strength whatsoever and through a allow us that person to lift an elbow and have that descent to begin because people with in 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 here, 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 if on the other hand you want everything medical science can provide I support you 100% and I ask that you support me as I make my own decision for what I want at the end of life. It definitely seems like there are some really particular quirks and odd ethical dilemmas that

we're coming up against here. For instance, somebody with ALS being able to move their elbow against here. For instance, somebody with ALS being able to move their elbow and push down on a plunger thing. Like, 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 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 where's the difference between murder and a physician? Like one of the questions, 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? 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, then letting them go. Then there is the disabled community, which is split.

Some argue that they fear they will be set apart and some may have 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 medical community because of incident, for example, like the Tuskegee expert where African Americans were deliberately infected with syphilis as part of an experiment. So I spoke with a wonderful 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 African-American community is simply not there. So that's where the oppositions are coming from. What do the lawyers say about this? 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. Do you think that there's an ethical difference between stopping, stopping from

keeping someone alive and giving someone something which makes them die? Think you talk about the difference of pulling, pulling the chew about versus administering a drug? There are many people who decide, as my late husband did, to stop old treatment, old 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 D-Z-Z method, voluntarily

stopping eating and drinking. It took him ten long days to die without water, without food, without medication. It's not an easy way to go, 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 knew 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 gotta be careful where you end up. Truly.

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? She had all her documents so clearly evident in her apartment saying do not resuscitate any circumstances, but when her neighbor found her unconscious, she called 911 and they got her to, 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. 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. 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 horrible it is to find

someone you love dead of a gunshot wound to the head or the stomach or a wrist slit or however one in desperation carries that out. Now many people say to me, well, what's the difference between medical aid, indying, and suicide? If one wishes to die, and makes that decision without being sick, but simply does not live anymore, sick, but simply does not 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, I am if I had my way, I live until I was 90. But I don't, I know I'm going to die,

and I don't want my 13 yearyear-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 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 clear by their doctors to use this

ultimately do. Don't ask me why. I mean, they made that decision, but what they are saying saying is I feel comfort, I feel at peace because I have this medication that I know I can use if the suffering becomes more than I want to tell, right? 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 at 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 going to 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 straight away is something which I don't really even know if I'm that. I'm an only child with two parents, 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, how you could get yourself to a stage where the person is suffering and, and so the people around them as well, right? You're family are suffering watching you suffer and you're suffering watching them suffer watching you suffer. So 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, we'll start talking about it now? That's too late. That's too late. How old are you, Chris? 32. And how old are your parents? 60s. Have you ever had this kind of conversation with him? Never once. And why not? 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, how's the dogs, what's happening with work. Oh, I've got this new thing going on. It doesn't tend to be how you open up the conversation. And I've had a couple of conversations 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 type of casket that you're cremated in, matters far less than the way that you spend your last few months. 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. I don't know. A question I have for you is, is it the job? Is it the job of the person to bring up the son daughter, or is it the mother father? Is it their job? It's anybody's job. Anybody's job. for example, a parent might say, you know, I'm getting a little older, I'm 16 now, I'm not gonna live forever. So I've been thinking about this whole issue of what

thinking about this whole issue of what kind of ending I like. Do I want to go to a hospital and get on that turntin 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, Mom and Dad, I talk to this woman the other day all about medical aid and 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, why do you want to 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 going to happen to all others. And I really would like to know what you would like in your own and life thinking. And if that conversation doesn't take off in the first time you raise it. I promise you, after you lead the house, they'll be thinking about what you said and used to say to my mother and I think it's because deep down I knew she was sick from the time 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 going to 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.

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're going to think that I'm trying to get rid of them, maybe they think I'm after the inheritance. The choice is between that discomfort or the discomfort of end-of-life complications, of stuff not happening, of things not 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 don't think that it's going to happen, not to me, not to them, not to my mum, not to my dad, we push it off 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 mums had a X heart attack stroke, whatever fallen down the stairs seriously, dads forgetting things. We've got early onset Parkinson's, we've got Alzheimer's, we've got dementia, we've got whatever it might be. And I imagine that most people would then begin to think about this conversation, like that's pulling the start of the person, it's like, oh, okay, right now we're into, we're into end of life, consideration period. 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 the door. Exactly, right. And it sounds 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 sick in their 60s. They're very healthy. They're enjoying life. They're enjoying their son. They, their traveling, their doing whatever they want to do. And that's what John Reame and I were doing for so many years, for 54 years. But I first realized, I mean, we had both talked a lot. 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. 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. 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 shupper in his walk. He was as strapping six-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, here physically to go from 175 pounds down to about 120 pounds. I mean 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." The doctor said, legally, ethically, morally, I can do nothing here in this state of Maryland. 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 the hands. It's such a savage way to finish a life. Like it's watching that

happen during it, both from the inside and the outside is just, I know that as uncomfortable as the conversation may be for everybody that's listening who's thinking, should I bring this up with Mum and Dad, I've got this sense that I might, I probably might be a good idea, but also it's going to 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 a stark of a contrast to the good death that you described earlier on, which is in your house, in your beds, surrounded by your loved ones. 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, why would you tell them to go? The Dunkin' Met Hurry is going to be released on PBS Worldwide in mid-April. And of course, you will 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.

There are all kinds of information out there. There's another organization called Death with Dignity that came out of 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 because I'm fascinated with why you personally were interested in talking to me. 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. 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 that are 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 the same way looking at the night sky make you feel small and insignificant it makes you remind you that you know your time on this planet is incredibly limited it's this brief window of consciousness bookended 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. 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 feel that we've probably overshot that, 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 passions more comfortable.

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 and most people would rather not do it. And I commend you, I help the 30-year-old for being willing to take on this subject and converse with me about it. Maybe I've planted a seed in your mind and you'll see where it goes. Diane, thank you. 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. Chris, thank you so much for today. Chris, thank you so much.