In this week’s podcast we talk with Lew Cohen, MD, about his new book “A Dignified Ending: Taking Control Over How We Die.”
Eric and I approached reading this book with trepidation. We feared it would be a polemic defending physician aid in dying. It is not. Dr. Cohen does not hide his beliefs and opinions. He also does not shy away from the complexity of the issue – he interviews leading disability rights activists and challenges leaders of the aid in dying movement. His book is filled with stories of the people and family, doctors and activist who have defined this movement.
As Eric says, he takes the controversy meter up to 11 with notions of approving aid in dying and euthanasia for progressive neurological conditions such as dementia (with thoughtful safeguards).
We challenge Lew, somewhat forcefully at times. Personally, I disagree with many of his stances (as you will hear/read), but I can respect how thoughtfully he’s gone about putting together his study of the issue.
As Dr. Cohen notes, no issue seems to activate the strong emotion centers of our brain like aid in dying. In this time of extreme polarization, it’s critical that we engage in thoughtful and respectful communication about aid in dying.
Eric: Welcome to the GeriPal Podcast! This is Eric Widera.
Alex: This is Alex Smith.
Eric: Alex, we have somebody else in our room with us today.
Alex: We have Jules Vieaux; he’s going to say his last name for us.
Jules: Hey, this is Jules Vieaux.
Alex: Who is a palliative care fellow here at UCSF. Welcome to the GeriPal Podcast, Jules.
Jules: Thanks for having me.
Eric: I see somebody right on my little video screen here, calling in from Chicago.
Alex: Yes, we have joining us on the Skype line, Lew Cohen, who is the author of the book A Dignified Ending: Taking Control over How We Die.
Alex: Lew is a professor of psychiatry at the University of Massachusetts, and a palliative medicine researcher who’s been involved in palliative care for a long time. Welcome to the GeriPal Podcast, Lew.
Lew: Well, thank you. I’ve been a longtime fan from my computer.
Eric: Well, we are really excited to talk to you about your new book, A Dignified Ending. Talking a lot about physician-assisted suicide, aid in dying. We’ll talk about the terminology used. But before we dive into that, we always start off with a song request. You got a song for Alex?
Lew: Yeah, if you wouldn’t mind, You Are My Sunshine.
Lew: Thank you, guys.
Eric: I would love to know why you picked that song.
Lew: Well, I could start by saying it’s because it means something to Jules, and Jules, you could tell us. Then I’ll give you a little bit of actually from the book where it comes from. But Jules?
Jules: I’ll make sure my son hears that – I used to sing that to him when he was a young man.
Lew: The song, although it doesn’t seem to immediately resonate with us as being related to end of life, it figured in the book in the following way.
Lew: The book consists of a series of stories that are interwoven with each other. Pretty much the last two have to do with a woman named Cody Curtis and her oncologist, Katie Morris, Kate Morris, who were in Oregon and who made use of the law that they’ve had there now for some 22 years.
Lew: The other story that’s interwoven in that piece of the book is that of Brittany Maynard, who is much better known, the 29-year-old woman who had glioblastoma, and who moved to Oregon so she could take advantage of the law, and whose last few weeks in the videos and such have really given a boost to the right to die movement.
Lew: But to get back to Cody Curtis, she was given an opportunity to be filmed in the documentary that won one of the awards at that time.
Eric: How to Die in Oregon, right?
Lew: How to Die in Oregon. Yeah. If I could just read just a small little bit-
Lew: “The Curtis family planned the last evening to also be a Christmas party. Their holiday tradition called for a lengthy sing-along. Before Kate Morris arrived …” Again, that’s the oncologist … “Jill had provided sweet harmonies while the participants loudly sang Christmas songs.
Lew: “Sing-alongs had a special meaning to this family, which cherishes them as being an unsophisticated country thing, linked to their farmstead roots. Familiar songs would be sung each year including Cody’s favorite, which coincidentally had to do with flying away and dying.
Lew: “Throughout the sing-along, Stan …” That’s Stan Curtis, her husband … “kept his composure until the line in You Are My Sunshine that goes, ‘Please don’t take my sunshine away.’
Lew: “He remained shut down throughout the next stanza. ‘The other night, dear, as I lay sleeping, I dreamed I held you in my arms. When I awoke, dear, I was mistaken. And I hung my head and cried.’ Cody had immediately noticed his silence, and she quickly suggested they all join in a happier song.
Lew: “The assembled broke into a raucous chorus of Jingle Bells. When all were sung out, she thanked her mother for joining them in this bittersweet event. And the older woman recounted with pride and joy the circumstances surrounding the day when Cody was born.
Lew: “Everyone looked at each other and declared the moment to be practically perfect. ‘Cody’s parents were not in on the story until the very end, but they figured it out. They got it,’ said Stan. ‘It’s one of the amazing parts about her death. Cody’s mother is a nurse, and she and Cody’s father had struggled over their daughter’s decision to end her life this way.’
Lew: “After Cody …” I might add that Cody is in her low 50s … “announced her readiness to take the medicine, Thomas and Jill, her children, hugged and kissed her, and then they and the filmmakers left the room. According to Kate, that was difficult to watch because they were crying and Cody was crying and everyone else was crying.
Lew: “The volunteer mixed the medicine into a drink. Kate asked if Cody wanted her to remain, and the patient answered in the affirmative, which was what Kate had been hoping would be her response. The surgeon felt responsible to escort her through the entire experience.
Lew: “Everyone gave each other hugs, including Cody’s elderly parents. She then drank down the medication cocktail, smiling and wiping her mouth. Cody turned to them, laughed aloud, and explained, ‘Room is spinning.’ In the past, that has not generally been a good sign. Her last words were, ‘This is so easy; I just want people to know this is so easy.’
Lew: “She finally drifted off after about half an hour, Kate explained. She started to snore. The C and [C 00:07:50] volunteer and I took turns holding her chin up, a gentle maneuver that’s called a jaw thrust, which relieves the temporary respiratory obstruction. She wouldn’t have wanted to be seen or heard snoring.
Lew: “Afterwards, the sounds of the Curtis children crying in the next room became noticeable. The grandparents left the room to comfort them. After about 45 minutes later, when Cody was fast asleep, Stan said that he was all right, and wanted some private time with her.
Lew: “The volunteer and Kate found it difficult to leave, but they also wanted to respect Stan’s wishes. When Kate returned home, her husband was away on business, and there was no one to talk to. She put away the pajamas that she had received as a gift, hugged her cats, and began crying.
Lew: “Stan telephoned her apartment around 9:30 that night to say that Cody had died, and Kate called the funeral home where arrangements had been made in advance to pick up the body on the following morning.
Lew: “In these situations, the doctor does not need to perform an examination for the formal declaration. The funeral home completes the official certificate, and the explanation of death is listed as being Natural Causes. The form was later mailed to Kate’s office for her signature.”
Lew: That’s how that chapter ends.
Eric: Reading through your book, I was just amazed at the different stories that you present. I think this one is an example of also how when everything also goes right and beautifully. I like also how you presented a lot of different stories.
Eric: I’d like to talk about that. But before we do, can we just take a step back? How did you get interested in this as a subject? Because previously, from a palliative care perspective, you’ve done a lot of work in kidney disease and palliative care and the intersection between those two. How did this come into play?
Lew: Yeah. My main research had been related to how people come to stop dialysis, and to die. I wrote a book right before this one, in which it was prompted by the fact that two of the nurses, our renal nurses had been accused of basically murdering one of our patients.
Lew: It was an instance in which the patient had stopped dialysis while being in the hospital, and it turned into this horrible thing where the police were contacted and an investigation was done.
Lew: Bottom line, what I wrote about in the book called No Good Deed, was about how this certain percentage of palliative medicine physicians and clinicians who get accused of having killed their patients.
Lew: I tried to make sense of what was going on. After the book came out, I was invited to join a think tank about assisted dying. As I did that, and I got to meet the physician who had organized the think tank, a man named Martin Raff.
Lew: First of all, I learned that Martin himself naturally had a very personal story to tell. Which had to do with his parents, both of whom with the full support of Martin and his brother, another physician, had decided a certain point, they were quite elderly, it was time for them to die. And had taken an overdose.
Lew: I came out of this conference that Martin set up, just really curious about these folk who make such decisions. I came out thinking that to my eyes, there isn’t a lot of difference between what they do, and what the families and the patients who stop dialysis and hasten their deaths are doing.
Lew: While I appreciate, needless to say, the differences that we all drum up, I was more struck by the similarities. So I was off to the races, trying to make further sense of the more active deaths involving assisted suicide or assisted dying. And this book came out seven years later.
Eric: In this book, a lot of great stories. I am impressed that you start off with, I believe, Hercules. Hercules?
Eric: Hercules. We go on to other examples of contemporary people who’ve taken their lives.
Eric: But you also bring in people like Sigmund Freud, who I had no idea, actually, with the aid of his physician, ended his life. Just some of those stories really just were eye-opening for me. Sigmund Freud. Who knew?
Lew: I could tell you, I’ve presented about Sigmund Freud’s terminal illness and his death. The death involved him having a relationship with a personal physician that from the beginning, had stated that when things got too bad and he wasn’t able to go any further, he wanted the physician’s help. And that physician at a certain point injected morphine into Freud, put him into coma, and he died.
Lew: But I presented this to on one occasion, a thousand different psychiatrists who were in the audience. Like you, for many of us, this was the first time we had ever heard such a thing. Yeah.
Alex: Can we talk about terminology here?
Alex: I mean, what ought we call this? What are the different terms used, and what are the different positions by those who espouse that we should use this term versus that term?
Lew: Yeah. I mean, needless to say, words are important. Names for things, names for practices are important. What I chose to do in this book was to use all the names that I encountered.
Lew: Assisted suicide, I mentioned a moment ago, is the favorite term actually of people who oppose such deaths. Assisted dying, more commonly is used by supporters. Medical aid in dying, or medical assistance in dying, is the term that’s used in Canada, which I like.
Lew: There really are just a host of others, and people are pretty vigorous in their defense of using particular terms, and not using others. I’m cool about using them all.
Eric: Particularly in the book you said that you’re actually okay with the use of the word suicide. Can you describe that?
Lew: Sure. I mean, again, my background’s in psychiatry. I’m a psychiatric consultant who has probably interviewed some, oh, 500 I would say, per year, folk who come in with suicide attempts. It’s a term that I use absolutely all the time.
Lew: The way I think about it now, especially after the seven years of working on this book, is that there’s a whole bunch of different kinds of suicides. There are some that we can and should do absolutely everything to prevent them from happening. Then there’s others that should be accorded our respect and our help.
Lew: I mean, how about you guys? I presume you have some thoughts on this.
Eric: Alex? My own thought is I don’t like death with dignity, because it doesn’t actually describe what’s going on, and feels very, like spin. Like you’re trying to push it.
Eric: I like medical aid in dying. It actually conveys to me a message of what’s going on without trying to argue too much for a pro or against stance on what we were doing.
Alex: Yeah, I suppose I hadn’t really … where do I stand on this issue? I’m deeply ambivalent.
Eric: You’re like most guidelines.
Alex: Most guidelines.
Eric: You have a-
Eric: Studied neutrality, Alex.
Alex: Studied neutrality, that’s right. That’s where I am. That’s the AAHPM official position, right? Studied neutrality.
Lew: It is now. Years and years of clear-cut opposition up and down the line in medical societies.
Alex: Some of these, like my parents, were fierce advocates for aid in dying. They had Tim Quill at their house for a book signing; we interviewed Tim Quill a few podcasts ago.
Alex: My dad died of glioblastoma multiforme; he ended up dying of an accident toward the end of his life. But they were fierce proponents, even as my dad was terminally ill.
Alex: But I worry about extending … I worry that the focus on aid in dying detracts particularly, coming from palliative medicine physicians, from where the focus should be, on access to high-quality hospice and palliative care.
Alex: And that in my daily practice, this is not as big of an issue as it is lack of adequate support for people to meet their primary goal, which is, for most people to meet their primary goal, which is to die at home, surrounded by loved ones.
Alex: We have several patients on our service now, Jules and I are on service, who cannot return home where they want to be, because there is no support system in our country to meet their needs in their home environment.
Alex: For me, it’s a matter of priorities, and that these requests typically come from most privileged groups; well off, wealthy, white individuals. We should be cautious and skeptical of making laws that benefit those who are most privileged in our society.
Alex: At the same time, can I say that there is a never a time where I would think this is appropriate for a patient? No, I can’t do that. Yes, I’m deeply ambivalent.
Alex: So my preferred terminology, from my perspective, is … I am also comfortable with multiple terms. I feel that the aid in dying is accurate insofar as these people are dying. If a term is broadened beyond people who have a short prognosis, then that term should be changed to suicide.
Eric: We had a previous podcast on the concept of rational suicide too, of individuals who may be older, don’t have any psychological or end-of-life issues, but are still considering this. We’ll have that link to that episode in our podcast notes. But you also talked about the concept of rational suicide, Lew.
Lew: Yeah, the first stories that I tell in this book … and they reflect the first ones that I encountered, were stories told to me by family members. Oddly enough, both the story that Martin Raff, and I interviewed his brother as well, told me about both parents. One could call it a double suicide.
Lew: I was interested in, and I encountered Chester Nimitz Jr.’s family. Chester Nimitz may be a name that’s familiar to many of you guys as being an admiral during World War II. This was his son, who was also an admiral in that same war.
Lew: Again, what the Nimitz family told me about was a joint suicide, a dual suicide, father and … I’m sorry, husband and wife. I was, and continue to be, incredibly impressed by the rationality of these people who made these difficult decisions.
Lew: I would want to pick up on something that was just said before, which was the priority argument. I know we want to mix things up in this podcast, because among other things, it’ll be more interesting.
Lew: But let me challenge that, that we shouldn’t be having these laws or putting this much attention on this issue while frankly, people don’t have good palliative care, don’t have good lives with some basic things that one would want.
Lew: I think that that’s an argument that may be emotionally appealing, but the data doesn’t really back it up. Which is to say, why can’t we both focus on this issue and also focus on these other things? It’s not like one is going to push the other one away.
Lew: If you look at the states that have passed the laws, particularly the beginning ones like Oregon and Washington State. Their palliative care services have not suffered as a result of it. If anything, have gotten stronger and are among the best that we have in the country.
Lew: Whenever you do pass a law like this, everyone who’s going to be participating from the physician end, wants to make damn sure that their patients have gotten maximal care. That means sensitive attention to the palliative care issues.
Lew: So there really is some incentive, if you will, built into these laws where palliative care is only going to get better.
Eric: I think you mentioned too that the vast majority of people who actually use physician-aided dying, that they also use hospice and palliative care services. Is that right?
Lew: Yeah. You bet. You’re talking 90, 95%. It’s that same reason; their physicians really go out of their way to make sure that these folk are receiving good palliative care.
Alex: Yeah, I actually just looked up the data from California, which passed the California End of Life Option Act recently. For 2017, 374 individuals used the act. About 10% were under 60 years of age; the majority, 77% were aged 60 to 89, with the remainder over 90 years of age. The median age was 74.
Alex: At the time of death, 90% were white; 51% female. 83% were receiving home hospice and/or palliative care. 73% had at least some level of college education.
Lew: Makes sense. California, by the way, when it passed its law; I think it was about four years now ago; that was an amazing opportunity for us to see what happens when you have a pretty diverse population, now able to tap into a law like this. Because Oregon, Washington, quite frankly, are not diverse. They don’t have the diverse populations. California’s the epitome of it.
Lew: You were right when you brought up the fact that the folk who are taking advantage, even in a culturally ethnically diverse state like California, are predominantly white and are relatively well to do, and are highly educated. There’s no question about it.
Lew: I think it’s one of the challenges for laws like this to make themselves available to everybody, and not just an elite group of patients.
Lew: But let me just underscore what you’ve just spelled out, is it’s a geriatric population by and large we’re talking about.
Eric: Yeah. I’m just thinking about the multiple barriers to access too, is that this is a really complicated process. Not many providers actually in California partake in the process. Some institutions say that nobody can partake in the process. If you’re in a federal institution, you can’t.
Eric: Then you have medications where a dose of secobarbitalis like $6,000. So there’s financial barriers too, in addition to the multiple steps, including finding two different physicians to help you through the process.
Alex: We just had a podcast with Bernie Lo about dilemmas that physicians face as they’re considering whether to participate or not.
Alex: I wonder, Lew, did you want to respond to that? Because I wanted to segue into talking about broadening inclusion measures, if we could go there.
Lew: Sure. I’ll just toss out the other factor that I know we will talk about, have to talk about, is religion.
Eric: Tell me more.
Lew: Well, because those who are especially observant will of course naturally turn to their spiritual religious leaders, their churches, their synagogues, for guidance as to whether or not such laws are ethical, are moral. And what they should do about them.
Lew: When these bills have been put forward, when they’ve been voted upon, when there’s been a ballot question, and you size up who’s supporting them, who’s opposing them. The most well-funded opposition is coming from the Catholic Church, which has ruled in lately fairly clearly that they are again, opposed to this and feel that these are immoral laws that they will do their best to prevent from being put into place.
Alex: One of my concerns, getting back to this issue of decoupling palliative care and hospice, and the best possible attention to symptoms and suffering, from aid in dying is that they are frequently basketed together.
Alex: When that happens, toxic things happen to palliative care. The unintended consequences of that then being packaged together has a potential to lead to more suffering or lack of access or lack of expansion or changes in healthcare laws.
Alex: The analogy here would be to the death panels, and how all legislation related to hospice and palliative care became toxic on Capitol Hill. Linkage of physician aid in dying to POLST forms or advanced care planning measures.
Alex: I worry that while yes, conceptually we should be able to decouple them, they are often packaged together in ways that have the potential to harm the underlying mission of hospice and palliative medicine.
Eric: You’re saying we shouldn’t be, in palliative care should not be closely associated with this, potentially?
Alex: That’s my position. Yes.
Eric: Because of the optics.
Alex: Though we do podcasts on this like every three months.
Eric: Yeah, every other podcast, we’re going to do a physician aid in dying.
Lew: But are you also saying … Let me just challenge a little bit, that we should decouple death and dying from palliative care and hospice.
Alex: Ooh, we have a blog post about that, too. Should we change the name of AAHPM to-
Eric: Puppies and Kittens?
Alex: We should take the Hospice out. I think this is clearly a wedge issue in the palliative care community. That’s important to notice. And rather than focusing on an issue which so clearly divides us; and as you write so eloquently in your book, just brings in people’s emotions and activates the limbic system like no other issue in our field.
Alex: Why not focus on areas in which we agree, and where we have a huge amount of progress that needs to be done in there; there’s a huge amount of unmet needs.
Lew: I’ll tell you why we shouldn’t just go with the things that aren’t emotionally evocative. Or put it differently, why we should focus on something like this.
Lew: It’s my own history on the subject is, that when I sat down in that first conference that Martin Raff had set up. My own position at that time was we shouldn’t have laws that held from time immemorial physicians have extended to their fondest favorite patients, a service at the end which is when the patients were suffering, that they would put them out of their misery, that they would give them an injection or find some way to help them to die.
Lew: I thought initially, why should we have any laws? Then when I began to actually hear the stories that the Raffs told about their parents or the Nimitz’s told about their parents, or others that I mentioned, I realized that we need laws.
Lew: Because just like my book No Good Deed, there are plenty of folk who take offense at this, who feel that it is not only immoral, but is illegal. The next thing you know, law enforcement is involved, and that there are these risks and consequences if we don’t address them with laws that are nice and clear and open up things.
Lew: Then there are families that are going to be at risk and suffer, and there are physicians who will in fact want no part of helping their patients at the end, because it’s too dangerous. They have enough going on that they don’t want to do that.
Lew: Which is to say, I think we absolutely need to focus on this as a profession. I think that palliative care and hospice would be neglectful if they didn’t tackle this, and people didn’t sort out their own feelings about it.
Eric: Now, I’m going to turn up the controversy dial just up from nine to 11 on this 10-point dial. I think like you said in your book, overall, the viewpoints on physician aid in dying is actually changing amongst physicians and the general public as well.
Eric: The number one thing that I hear, like when I’ve given talks about this subject before, to the general public, is, “Oh yeah, if I had dementia, I certainly would want this. We need to pass this law in California.”
Eric: I have to remind them, “Well, this law doesn’t apply if you have a neurocognitive disorder like dementia, because you wouldn’t have the capacity to make that decision, if you were within six months of dying. So it doesn’t apply to dementia patients.”
Eric: A good portion of your book, and of your stories, is around this particular issue, which is much more controversial, about physician aid in dying in diseases like dementia, whether it be done earlier on in the disease, or potentially euthanasia, when they no longer have capacity.
Lew: Yep. Yep. I’m glad you’re dialing it up, because it is what people really are beginning to think about, now that we have had it out there for the terminal diseases; that’s what all the laws address. What about the neurodegenerative disorders?
Lew: Dementia, for sure, but also the ALS, also the Parkinson’s, also MS, and so on, which by and large are not covered by the existing laws that we have.
Lew: You’re right, a lot of this book is focused on that or has that as a subtext. I didn’t think it was going to. And of course, I’m a psychiatrist, I’m supposed to be self aware.
Lew: But what I didn’t appreciate until after I’d done a lot of the writing is, my own father had a dementing illness for the last half-dozen years of his life, during which time he didn’t speak. He was aphasic. But he went the full route with the incontinence and with everything else that comes with a really bad dementia.
Lew: That fate is truly for me, and for many people, if not most people, a fate worse than death. I realized that it is certainly much more terrifying to me than having some horrible disease. Glioblastoma has also been in my family, and it comes to mind. It’s much more terrifying.
Lew: I’m glad we’re going to talk about that. I would open this up to also say that in Canada, where they have a, if you will, universal laws that have been passed; they’re modified according to each of the provinces. But there was a Supreme Court ruling, unlike ours, which said, “This is a basic human right.”
Lew: There’s some interesting differences what they came up with in terms of the protocols versus the United States. But bottom line is that they are now re-examining their medical assistance in dying laws, and very likely within the next year, will come up with some provisions that will make these protocols flexible for folk who have dementias. I’m talking about probably early dementias; certainly not severe, the end stage dementias.
Alex: Lew, I want to pick up on something you said a moment ago, when you were talking about your father and talking about how being in a state of dementia is a state that seems worse than death.
Alex: I want to challenge that assumption, and also this assumption that people who are living with disability, cognitive impairment, dementia, necessarily have a poor quality of life.
Alex: I think the argument runs something thus. John Kelly, who you interviewed for this book, articulated this well. I watched the YouTube video of him right before starting this podcast, where he says, “Every time I see a movie about somebody who looks like me, somebody who is disabled in a wheelchair, I get ready for some happy story about, ‘Oh, he’s going to nobly request physician aid in dying, Million Dollar Baby, The Sea Within, and other such books.’ Or movies.
Alex: I was also reminded of that scene in Super Size Me. Remember that one, about the guy who ate McDonald’s for one month, nothing but McDonald’s?
Alex: He interviews these advertising executives, people who monitor advertising, who describe that we are bombarded throughout our lives with imaging of fast food. In this same way, we are bombarded in public media, in movies, in books, with images of disability as a life that’s not worth living.
Alex: Yet, there’s considerable research that supports the notion that quality of life can be good for, even better, in some states of disability with adequate support. With support.
Alex: I worry that the argument is based on this autonomy, why shouldn’t I get to choose this? When in fact, we don’t understand the degree to which we are not actually setting the terms and conditions around that decision, which is highly influenced by media, by our cultural attitudes, et cetera.
Lew: Yeah. Looking at this subject from the perspective of people like John Kelly, from folk who are dealing with disabilities, was like dementia, one of those topics that I didn’t think was going to be as important to me when I started writing this, as it proved to be.
Lew: I think that activists like John have things that we do need to listen to, and that it certainly has pulled me back from jumping to simple conclusions or making declarative statements.
Lew: You didn’t hear me saying that quality of life of folk with dementia is terrible. What I said is, essentially, that I am terrified at the thought of getting a dementia myself. And it’s based on what I saw with my father.
Lew: The other thing, I guess, about dementia for me, and this was again, unexpected. In the book, I, as you know, tell the story of a young woman who comes down with an early form of pre-senile dementia, and who had always declared that if she had a dementia, she wanted to end her life.
Lew: In fact, her story is one in which the family, although they were completely in agreement with her about this, and her husband who was a physician, was again in agreement and they were going to make the most of their lives while they could, the nature of dementia and particularly her dementia was because nobody actually made a move, made a decision, set some sort of a hallmark for when something has to be done.
Lew: Time slipped by and the next thing you knew, she had slipped into her dementia further, and was no longer able to speak up for herself, or for that matter, recognize the people around her, or do much more than what we did to begin this podcast, which is to sing along with some music that was meaningful to her.
Lew: She was sent to a facility where she received excellent care. Was she happy? Probably. But if her earlier self had been able to look down at what kind of life she was now leading, would that earlier self be happy, tortured, whatever? Probably.
Lew: Yeah. Or?
Alex: Or, not. Or, “Wow, I didn’t realize how well I could adapt, that I could still enjoy listening to music and sing along. Wow, that’s actually a surprisingly good quality of life.”
Eric: But does it matter what the earlier self thinks, versus the current self? Eric Widera, when he’s 18, probably looking at Eric Widera when he’s … how old am I now? 44? I lose track of my age. “Oh my God, I never want to be that guy when I was 18.” But here I am, and I’m pretty happy.
Eric: Does it matter what my 18-year-old thought? I am a different person now, just like that individual dementia is a different person. Doesn’t matter what the previous person thought.
Lew: And it may not. Although some folk feel rather strongly that they want as much consistency, I guess, as they can in their lives. If they had been in control and successful and be in control through much of their life, they want to continue that.
Lew: If they were big readers, they can’t and don’t want to foresee a life where they no longer can read. If their families are important to them, and they no longer can recognize families. If food was important to them, and they no longer quite remember how to swallow.
Lew: Again, it’s a toughie. It is a real toughie. I just know from myself, I’m going through changes like Eric has. The new Lew has become a grandfather about a year ago for the first time, and has another daughter-in-law who’s pregnant.
Lew: I found that I spent a week with my wife taking care of that first grandchild. I didn’t write; I didn’t do much of anything, other than read stories that this little baby didn’t probably … I know didn’t understand. Fed her, changed her, and I was quite content with that.
Lew: I mean, I’ve lived this summer the experience of potentially a new me, and it’s okay.
Alex: Jules wants to jump in here. Jules.
Jules: I think this points to one of the nuances of advanced directives, and how it’s important that they can change over time. You guys did a podcast earlier about dementia-specific advanced care planning and directives.
Jules: I think the fact that how we’ll feel in the future may be different in the fact that it’s hard to predict. It doesn’t take away the importance of thinking about it, but it relies on the importance of being flexible.
Eric: Yeah, I think that’s the challenge I have, even with advanced care planning, is this concept of adaptability. As a human species, we are incredibly adaptable. While we think we aren’t, while we think our quality of life will be miserable, let’s say if we have a disability or an amputation; when we do have those issues, we actually tend to have a good quality of life.
Eric: Alex wrote a great paper looking at nursing home eligible patients are part of a PACE program, Program for All-Inclusive Care of the Elderly. These people are pretty disabled, and they had a good quality of life.
Eric: That’s because we are adaptable as a species.
Lew: Totally right. Totally right. My own assumption is I think forward as to what Canada, for example, is going to do. Jules is on the mark. They’re going to rely more on advanced directives geared to tackle the dementia question. They’re going to deal with advanced directives that say, “If I no longer am able to eat by myself, I don’t want a tube placed down” and the like.
Lew: Where I think these things are going to become applicable is again, not to the severe demented, not to even the probably medium, if you will, stage, but to the folk who are still in the early but very distinct stages of dementia, where they are going to still be uncomfortable.
Lew: They’re going to be suffering because they have dementia. They haven’t adapted to it, and they’re going to be able to pull out these advanced directives as support for why they at that point should still be eligible; why they should be eligible for these laws.
Alex: Oh yeah.
Eric: My last question for you, because I realize we’ve taken up a lot of your time; is that as we start encompassing broader groups of individuals who aren’t at the end of life, I can imagine those groups of individuals that you’ve talked to around this who are opposed to this could say, “See! I told you so. This was a red herring, this less than six months to live.”
Eric: Where does the slippery slope end? Does everybody have a right to end their lives at any time? Should this apply to people with debilitating psychiatric diseases, who say, “I’m suffering. I don’t want to suffer anymore in my life”?
Eric: Is there a limit? Is there a, okay, nothing passes this boundary? I recognize already, no the end’s probably like, there’s a lot of controversy and I think that the reason that we’ve had multiple podcasts on this, this is an incredibly interesting, fascinating, and conflictual kind of topic.
Eric: But what are your thoughts? Is there a … Yeah, this is where the line is?
Lew: Yep. Slippery slope has once again reared its head-
Eric: I had to throw that in there.
Lew: … and I was tempted … I didn’t, but I’m tempted still to write an op-ed called Traversing the Slippery Slope. It would make the point that in the old days, as in 25 years ago maybe, we thought of an icy slippery slope as being the sort of thing that can only harm us, and we should stay off of it and stay indoors and make sure we have our mufflers on if we go outside.
Lew: Nowadays, people put on gear and they go and call it skiing, as they traverse the slippery slope and enjoy themselves.
Eric: On the West Coast compared to the East Coast, we have something called sluffy snow. But it’s not as slippery.
Lew: But bottom line is, that yes, those folk who are going to say, “Isn’t this a slippery slope?,” when you’re talking about extending these laws, changing, modifying these laws now.
Lew: Well, laws need to get modified and changed. When the Emancipation Proclamation was declared, and slavery was abolished, that still left a lot of room for modification and laws, and we’re still making laws so that people can vote. So that people won’t get excluded from voting rolls.
Lew: When that Emancipation Proclamation was declared, no one would have ever contemplated that we could legalize miscegenation, marriage between people of different races or ethnicities. It takes time, and it is a good thing, when laws begin to reflect what we in our societies need.
Alex: There are so many topics we could touch on. We haven’t talked about medications, we haven’t talked about new tech, helium-based means of ending somebody’s life. We haven’t talked about so many aspects. But I think, my summary is this is an incredibly thoughtful treatment of a very complex topic.
Alex: Lew, kudos to you for putting the hard work into interviewing all of these different people, about their stories and thoughtfully reflecting. You talk in this book about how you don’t hide your own opinions and your own perspectives, your own stance here.
Alex: In fact, you say, “My personal hope is that this book will serve to encourage us to talk further about broadening inclusion measures, and cautiously liberalizing future laws.”
Alex: “With eyes wide open, people should read this book because it presents a compelling case about issues that are at the forefront, and that will continue to be pressing around this issue going forward.”
Eric: I really liked how it was not … because whenever I see a book like this, I worry, “Oh, it’s just going to be unilateral, one-sided, we should be doing this.” I had that worry when I started your book.
Alex: Me, too.
Eric: It quickly disappeared. I loved how you brought in the viewpoints of the disability rights advocates, how you actually saw their viewpoint. And the real truth to their argument, too. How this is a challenging topic, that it’s important to see both sides. I really want to thank you for that, too.
Lew: Hey guys, I have truly enjoyed this. I know that people will never hear You Are My Sunshine quite the same way as a result of your singing.
Eric: Well, how about we actually end with a little bit more of You Are My Sunshine, Alex?
Alex: Okay, the next verse … Most people don’t sing the next verse.
Alex: But, we’ll sing the next verse. Because it gets a little bit different perspective on the song. But we’ll start off with the chorus again. I’m going to hit this button here.
Alex: You’re going to join the chorus, right?
Eric: Oh my God, that is dark! It reminds me … Did you ever see Hamilton?
Eric: The King’s song in Hamilton? Where it’s this love song.
Alex: “I’m sending you a battalion, a fully armed battalion to remind you of my love.”
Eric: Yeah. “When push comes to shove, I will kill your friends and family to remind you of my love.”
Alex: That’s right.
Eric: It got dark real fast.
Alex: That’s right.
Eric: Well Lew, thank you very much for joining us.
Alex: Thank you Lew. Appreciate it.
Lew: Thank you.
Eric: I want to thank all of our listeners. If you enjoy our GeriPal Podcast, please remember to rate us on iTunes or whatever podcasting app you use. Also, retweet and share our posts. We’re on Facebook, Instagram, Twitter, and YouTube.
Eric: What makes us continue is having people share our podcasts with others. We look forward to having you with us next week.
Alex: Thanks, folks. Bye.