After Amy Bloom’s husband was diagnosed with Alzheimer’s disease, he decided he wanted to die on his own terms, which Amy depicted in her memoir “In Love.” She’s joined by moral and legal philosopher Dr. Joan McGregor to talk through the difficulties — emotional, legal and practical — of making autonomous decisions about end-of-life care.
We talked with:
- Amy Bloom is the author of four novels: “White Houses,” “Lucky Us,” “Away,” and “Love Invents Us”; and three collections of short stories: “Where the God Of Love Hangs Out,” “Come to Me” (a finalist for the National Book Award), and “A Blind Man Can See How Much I Love You” (a finalist for the National Book Critics Circle Award). She is the director of the Shapiro Center at Wesleyan University. Her most recent book is the widely acclaimed New York Times bestselling memoir, “In Love: A Memoir of Love and Loss.”
- Joan McGregor, Ph.D., is a professor of philosophy at Arizona State University where she researches questions in moral and legal philosophy. She researches bioethics and sustainability — and has published more than 50 academic articles and book chapters, several of which focused on end-of-life care.
We talked about:
In this episode, Dr. Millstine and her guests discuss:
- The trickiness of dementia diagnosis. Dementia is often realized in retrospect. At first, it’s easy to excuse symptomatic behavior as a personality quirk or fatigue. And the person themselves may not fully recognize that their abilities and capabilities are changing. Dementia also looks different person-to-person — affecting executive function, memory and personality to various degrees.
- The fight for medical autonomy. The rights for medical autonomy have increased. You can refuse care and you can create directions for medical professionals to follow if you become unable to make those decisions for yourself. But those advanced directives aren’t always taken seriously, and even states that allow physician-assisted death come with many conditions.
- Facing the end. Our guests emphasize how important it is to have discussions with your loved ones about what you and they want for end-of-life care — regardless of your age or health status.
Can’t get enough?
- Purchase “In Love: A Memoir of Love and Loss.”
- Purchase the Mayo Clinic Press book “Mayo Clinic on Alzheimer’s Disease and Other Dementias.”
- Purchase the Mayo Clinic Press book “Day to Day: Living with Dementia.”
- Want to read more on the topic? Check out our blog:
- If you’ve got ideas or book suggestions, email us at firstname.lastname@example.org.
- We invite you to complete the following survey as part of a research study at Mayo Clinic. Your responses are anonymous. Your participation in this survey as well as its completion are voluntary.
Read the transcript:
Dr. Denise Millstine: Welcome to the “Read. Talk. Grow.,” podcast where we explore women’s health topics through books. In the same way that books can transport us to a different time, place or culture, “Read. Talk. Grow.” demonstrates how they can also give a new appreciation of a health experience and provide a platform from which to talk about health conditions. At “Read. Talk. Grow.,” we use books to learn about health conditions in the hopes that we can all lead happier, healthier lives.
I’m Dr. Denise Millstine. I’m an assistant professor of medicine at Mayo Clinic, where I practice women’s health, internal medicine and integrative medicine. I am always reading and I love discussing books with my patients, my professional colleagues, my friends and now with you.
Our topic is early onset dementia and accompanied death. Our book is “In Love: A Memoir of Love and Loss” by the inimitable Amy Bloom.
Amy Bloom is the author of several books; four novels, three collections of short stories. She’s been a finalist for the National Book Award and the National Book Critics Circle Award. She’s written for probably every magazine our listeners can imagine: The New Yorker, The New York Times Magazine, Vogue, Elle, Atlantic Monthly. The list goes on. Amy’s also a full professor of creative writing and the director of the Shapiro Center for Writing at Wesleyan University, and her most recent book is the widely acclaimed New York Times best-selling memoir “In Love.” Amy, welcome to the show.
Amy Bloom: Thank you. It’s good to be here.
Dr. Denise Millstine: I’m in the presence of two professors today. Our second guest is Dr. Joan McGregor, who’s a professor in the School of Historical Philosophical and Religious Studies, the College of Liberal Arts and Sciences at the Arizona State University, where she researches questions in moral and legal philosophy. She researches bioethics and sustainability and has published more than 50 academic articles and book chapters, several of which have focused on end-of-life care. Joan, welcome to the show.
Dr. Joan McGregor: Thank you. Glad to be here.
Dr. Denise Millstine: Amy Bloom’s memoir, “In Love,” is a reflection on a loving marriage cut short when Amy’s husband Brian, develops early onset dementia and then, while still lucid, opts to end his life on his own terms. “In Love,” was suggested to our team by the Mayo Clinic press editor in chief Nina Winer. Of course, when the boss suggests a book, you take notice, but I started “In Love” and couldn’t stop. The whole book is just so expertly crafted to bring the reader into this incredibly private and tender time in Amy and Brian’s life. I want to start by expressing gratitude for putting this book into the world.
Amy Bloom: Well, I appreciate that. As a friend of mine said, “This is the only book you’re going to write in which people are going to say, you have my condolences and also congratulations,” and I understand that. And it’s a hard thing. I have to say, right before the book came out, I called a friend of mine who’s a psychologist and said, “Could you put together a group of friends, people I don’t know?” I need to practice because I need to practice talking about this so I am not just a puddle in the middle, which then makes people feel bad and they want to take care of you and they don’t know how to proceed, and I said, “I got to practice.” It was super helpful, and they said to us, “What kind of book group would you like us to be?”
I said, “Aggressive. I would like you to be the kind of book group that nobody wants to encounter.” They did a great job, and I got through it and I thought, “Oh, all right. I can do this.” Because the book was so important to Brian. I had no wish to write a memoir. I will never write a memoir again.
I don’t even read a lot of memoirs. But as he said, “You need to write about this.” He said, “If I had a leaky faucet, I’d call a plumber. I need a book. You’re the writer.”
Dr. Denise Millstine: Joan and I were talking about your book before we knew we were going to have the benefit of being in a podcast with you together and just saying how important it is that you did bring this topic forward. Because it is. It’s difficult, it’s challenging. People have a lot of thoughts about it, whether they are informed or not, we can talk about it a little bit. But Joan, tell us about your reaction to “In Love.”
Dr. Joan McGregor: I just found it just incredibly meaningful. I work as a bioethicist and served on ethics committees in hospitals and sat bedsides in hospitals with people and their families who are dying and trying to make decisions about end-of-life care, but just personally one of my greatest fears is getting dementia and then just being the narrative arc of my own life and what I care about and what’s meaningful to me gets lost.
This is a deep, visceral fear. I mean, I’ve told all my family members to just throw me out in the desert. I always try to figure, how is it that we can feel in control then? Your story with your husband just represented, I think, a fear that many of us have. We now have, and we’ll talk more about this, more rights to decide what our end-of-life trajectory looks like, although still way not enough, and still have to fight for it is what I found with both my parents, having to fight for their rights.
I just feel like this is such an important topic. We need to talk about it. Dementia is not going away. We don’t have cures for it, and it’s only growing and growing. Not just as a professional bioethicist, but just as a human being, I want people to be talking about so much to figure this out. We need to be addressing this. That was my sense of the book, and it’s just beautifully written too. That’s fantastic too.
Dr. Denise Millstine: One thing we worry about on “Read. Talk. Grow.” is whether we’re going to spoil a book for listeners who haven’t read the book yet. So I do want to make the comment that very early on in the book you tell us where we’re going. You paint the picture of Brian’s diagnosis of dementia and tell your readers that he decides that he’s going to control the narrative and pursue accompanied death with your assistance.
If anybody reads the first five pages of the book, they will know where we’re heading with this story. So no spoilers in this episode, but Amy, I think the topic of dementia is really tricky, particularly in somebody who’s high functioning and working. Can you tell us more about what you started to notice with Brian when you thought, “Oh, this isn’t just him being quirky or annoying, but there’s something going on here that we need to pay attention to.”
Amy Bloom: Yeah, I think for most families, dementia is a diagnosis that you understand in hindsight, not at the time. At the time people are like, “He’s tired, he’s out of sorts, middle-aged man blues, he was never very good with technology.” We all have ways of normalizing our own behavior and everybody else’s, especially the people we care about.
It’s like if your toddler has a tantrum, somebody’s going to say, “He’s so tired.” They’re not going to say, “What a rotten kid.” I mean, they might, but those are not people you want around you very often. He was an architect. I think he could probably do design up until the day that he died.
But two years prior to his death, he could not work the printer, the copier in his office and the admin was tired of showing him and eventually said to him something like, “Brian, I showed you this like 20 times. I can’t keep doing this for you. I don’t have the time.”
His feelings were hurt and she felt bad, and he told me about it and said, “I don’t know why she’s being so difficult about it.” At that moment, I thought, “Oh, he is not recognizing that he has asked her 20 times in a row about this.”
He left the job about six months later. Again, his boss was very kind and was like, “We’re not firing you. We’re just not going to renew your contract. Brian came home and said, “I’m being fired” because he understood what was going on. But I could tell that he had some trouble understanding why, except that his work had gotten very slow and that he had grasped.
What I had understood when he was talking about it was that he was sort of missing the point, that it wasn’t just that the work was slow, that they would come in and say, “Oh, this is for so-and-so. We really want to go in very neutral tones,” and he would come up with something that was very beautiful, but it was sort of Renaissance Italian, and it sort of really missed the mark on beige, but that somehow he had not taken it in.
This is somebody who always worked very well with his clients and always felt that the architect was there to serve the client’s wishes, and somehow he was not grasping what the wishes were. That was a big signal. He had some trouble with his balance. I think one of the things that’s really hard is that it affects different people differently.
Somebody’s personality might stay the same, they might just have some memory failures. But part of a memory failure is that you can’t learn. If you are telling me some useful information, but I can’t retain it, I can’t do anything with it, including things like I’m just running to the store for 10 minutes. If I can’t retain that information 15 minutes later I’m going to be frantic if I’ve noticed or depending on my personality, or feel abandoned, or be angry, or wonder where you are, or call the police, or call my children.
For some people, it’s memory. For other people, it’s executive function. For other people, the anxiety and the frustration around memory issues overcomes a lot of other aspects in their personality. People can become very angry and upset because it’s very scary.
Dr. Denise Millstine: In my practice, I see both. I see people who become more unpleasant, and then I also see people who sort of layer on the charm, and that can be tricky as well. Your example of showing someone how to use the copier if they’re coming at you with a smile and like, “Hey, just could you help me out with this?”You think somebody might be being friendly or just wanting some help with something. But I love how you framed some of these real-life examples where if your flags are going up, that this highly functioning architect should be able to make a copy and cannot, it’s time to probably seek some assistance and assessment on that.
Joan, I’m sure you navigate how challenging it can be to make medical decisions when somebody starts to have cognitive decline and dysfunction. Can you talk us through some of the challenges and also emphasize what Amy and Brian’s experience was in that they had these serious conversations as early as they could so that they could make sure Brian was as lucid as possible to know what he was deciding.
Dr. Joan McGregor: Well, one of the things I wondered how many people are aware of is that currently in the United States, all of us have a right to refuse treatment. At any point you can have care stopped or not started, that is for competent adults you have that legal right. From a moral perspective, we see that as part of a patient’s right to autonomy.
That is the idea of you making decisions about the way you want to live. Historically, we didn’t always have that. Physicians often thought, “I know what’s in your interest.” It’s sort of been a fight to even get to that point. Patients have a right to determine their destiny and how they live and how they die.
Now that just goes with getting medical treatment or not. So you can stop chemotherapy, you can stop, you can even be withdrawn from a ventilator, which basically keeps you alive, and so that’s one place that we’re at. Then, of course, we’ve developed these devices called Advanced Directives. People talk about living wills, and most states now have those laws.
Physicians often make sure that people have those, and the idea there is if you become incompetent, you still can have your voluntary choices exercised. So if you don’t want to get a DNR, you can have that done even though you’re not currently competent.
Amy Bloom: Well, you can hope to have that done, if I may.
Dr. Joan McGregor: No, you’re right. You’re right.
Amy Bloom: But in fact, unless it is stapled to your robe when they pull you into the E.R., and unless you have a very aggressive spouse or child, the chances are, I would say at least 50 / 50 that somebody will ignore them, or somebody will go to somebody in the waiting room and say, “I can’t imagine your mother really wanted this. If you allow us to amputate her foot, we just think that might be better,” and somebody in the family will go, “Better! Of course I want it to be better! Amputate her foot!”
Dr. Joan McGregor: I agree. The default in the medical profession is “keep people alive as long as possible under any condition.” And having worked with a number of physicians over the years, I think we don’t do a good job of teaching physicians that death is part of life and there are better and worse ways of dying. And so you’re right.
In some sense it’s a legal document, although it’s not actionable. Physicians can’t get sued for failing to protect what’s in their Advanced Directive. In fact, I’ve actually heard from medical people that they want a tattoo on their chest, do not resuscitate because unless you’re holding the thing in your hand that we don’t have that kind of protection.
This is for people who are competent. We’ve been fighting for these ideas for those of us who are competent, and even if we become incompetent at some point, there’s a document that says, “This is what I want, this is who I am, do this, don’t do this other stuff.”
It’s frustrating in 10 states and the District of Columbia, we now have physician-assisted death statutes, but they don’t help people with dementia.
Amy Bloom: They don’t actually help anybody who has a long terminal illness. In other words, any kind of illness you have, but especially anyone that involves dementia, can also be true for Parkinson’s, all sorts of dementias. You have to have six months left to live, and two physicians who’ll assess that. Well, if I have Alzheimer’s, by the time I have six months left to live, I have stopped all my cognitive function. So it has no meaning at all.
Dr. Denise Millstine: You discovered that as you navigated this journey. I’m going to just bring us back one or two steps here and talk about those Advance Directives and let our listeners know that your state, if you’re in the United States, your state has a legal process for these advanced directives that is very clearly outlined and that your physicians should be able to guide you in or, your lawyer can help you as well.
But just encouraging people to have these conversations and this was my point in the question early, Amy, that you didn’t want to find out that Brian had dementia or confirm the diagnosis that you suspected and turn right to conversations about death, and yet if you don’t, then time passes and you potentially, and often, lose that window to have those honest conversations, which I’m hoping “In Love” helps people approach the conversation of, “Where are we going here?” And if you can choose, what do you want while you still have your voice?
Amy Bloom: I think it is very hard. Nobody wants to have these conversations, but I think the natural human impulse, even if you get the diagnosis of something like Alzheimer’s, is, let’s see, maybe it won’t be that bad. We’ll talk about it in a couple of years. We’ll see how I’m doing. But the fact is, since the brain structure is sort of disintegrating, people are going to keep their ability to have a conversation.Even if they have lost both intent and meaning, they will still sound like somebody having a conversation, which is one of the things that makes it so hard for caregivers, of course. But as Brian said, this is the kind of thing if you don’t leave earlier than you want to, you will not get to leave at all.
Dr. Joan McGregor: That’s one of the things in your book. I thought that he was so particularly brave, it sounded like to me because that is the tough thing. There is this window. Of course you don’t know how big the window’s open, but if you hadn’t acted when you did, and of course, with COVID, you would have been stuck afterwards.
That’s what’s so tragic about this because you wonder if we had a system which I know in the Netherlands you’re talking about is sort of Advanced Euthanasia Directives where people could say things in their Advance Directive, with dementia, that when I get to X point, don’t remember my family, don’t remember who I am, that’s when I want to go. You wouldn’t have had to make that hard decision. I felt for you in reading that because it felt really hard.
Amy Bloom: It was really hard and he was very clear-eyed about it. We had seen dementia in our extended family. We knew what it looked like. We knew what it was like to have a family member go from their house, that they were so proud of and enjoyed so much, to a lot of anxiety about their belongings, to a lot of suspicions about their family members and about the cleaning lady, and then go to assisted living, which she was not able to manage for more than a couple of months, to then go to memory care and just be utterly miserable and bereft and lost.
He knew he did not want that for himself. In his ideal world, we would have waited a couple of more years. He would have had an advanced directive that said when the following things, the following cognitive losses have taken place, I wish to end my life peacefully and painlessly, but that is 100%, not anything you can do legally in the United States nor in most other countries.
Dr. Denise Millstine: I want to talk about your personal experience with your relative who had, or I think it’s your mother-in-law’s friend who had this course of dementia, because I think you really poignantly describe your conversation with Brian’s mother about the choice that he was making, and because she’s walked this journey with her dear friend, she surprises you, I think, a bit with how open she is to the wisdom of this choice.
I guess what I’m hoping is that people don’t have to go through this personally because they could read your book and really see it from multiple sides to decide what’s right for you.
Amy Bloom: Well, that’s the wish. That is the idea behind choice in general in this world as an autonomous human being, which is, if it doesn’t harm anybody else, it would be good, good in the moral sense as well as in the satisfactory sense that you should get to choose. And for her, who is very religious, still very religious, and Catholic, she said, “I prayed about it all night and I realized that I am relieved.”
She said, “I am shocked at myself, but I am relieved.” She said, “I saw what my friend went through and I don’t want that for my boy.” I do think if you have lived with it close up, I mean, everybody’s experiences are different. I would also say I think it is one kind of process with a parent in their 80s or their 90s, a different kind of process with a sibling or a spouse.
It’s hard to face no matter what. But I think if you have lived through it, I think you maybe have in some sense more useful ground to stand on. I will say a friend of ours, Brian, played a lot of football, and so he had a lot of friends who played a lot of football and one guy was his coach and got Alzheimer’s before Brian did and died shortly after Brian did.
His wife, his widow came to see me, which was incredibly kind of her, and she said, “We didn’t get the diagnosis fast enough. We didn’t have the option.” She said, “By the time I dragged him to the neurologist, he really was no longer in a position to make those kinds of discernment and judgments,” and she said, “I want you to know you did the right thing.” She said, “It’s what we would have done if we had had that choice,” which was incredibly kind. Obviously for other people it wouldn’t be what they would do. You said at the beginning of the talk that people have a range of thoughts about this, and I think they do, but my own feeling in conversations with people is that they are not thoughts, they are feelings, which we all try to gussy up as thoughts.
Dr. Joan McGregor: It’s a little frustrating that the only way you can exercise this choice is to do what you had to do, which was to go all the way to Switzerland. We are supposedly a country that believes in individual rights and individualism, and the idea of people being able to determine their destiny, and yet at least legally, we are so far from this that it’s frustrating.
I really honor what you did, but that just seems like we do need to be addressing how we make this so that choices are more accessible to more people.
Amy Bloom: Absolutely.
Dr. Denise Millstine: The amount of work that you did to really figure out what was the best pathway or what seems like was actually the only pathway is well outlined in the book. I have to imagine, I don’t think you state this frankly in the book, but I imagined that when you told Brian you would help him with this, you had no concept of what kind of hill you are about to climb.
Amy Bloom: No, I didn’t. So I have to just make it clear I didn’t really volunteer for the job. This is what I said to him: “You don’t need to do this. I can keep you at home. I can take care of you. I’ll take care of you as long as it’s humanly possible, and we’ll be okay. We can do this,” and he said, “You’re not hearing me. This is not who I am. I don’t want to die and know that my family is relieved. I don’t want to die knowing that I didn’t know anybody, that I was unable to help them and they were unable to help me.” He said, “That’s not what I want.” He said, “I would like to die as the person that I am,” and he said, “and you’re going to help me.” I was like: “Okay, I’m gonna help you.”
Dr. Joan McGregor: There’s so many issues here, but one of the issues that I did want to put on the table, since we’re all women, is that across the country most of the people that are caregivers — because there are people that actually end up in institutions — but many people are still being cared for at home and they’re being cared for by women.
It’s a toll. There’s a lot of data now on the toll of caregivers of all kinds of health and maybe Dr. Millstine, you see this in your practice, of women that are caring for husbands or fathers or mothers and the effects on their health.
It’s serious and it’s once again uncompensated labor, not that we necessarily need to be compensated for taking care of our loved ones, but the point is that that’s another invisible job that women are doing, and it’s not one that’s always lovely. It can be quite debilitating to them. So I feel like that’s something that this larger discussion about Alzheimer’s needs to address is who’s doing the caregiving, who’s going to be doing the caregiving.
Amy Bloom: Absolutely is not only uncompensated, but unsupported. I am delighted that the local hospital will have a meeting, a support group for caregivers. Now, of course, I don’t know who’s watching your patient, while you’re going to the caregivers meeting. So unless the hospital’s also providing a large room with several staff who are looking after the patients, they’re basically saying, as we tend to do in American healthcare, good luck to you being an individualist, get on your horse. And you’re like, “That is not how the West was won.” It’s not how anything was won, but there’s a lot of praise for caregivers. The praise is usually couched in a lot of what I think of as nice lady words. People are so devoted and they’re so sweet and they’re so caring. Meanwhile, their lives are crashing and we basically say, “Oh, it’s really great that you’re able to do this, and that seems to me to be slightly more insulting than no help at all.”
Dr. Denise Millstine: Speaking of insulting responses, when you told some people that you were navigating the end of Brian’s life in this way, not everybody was kind to you, and some people intended to be kind, but the responses were not so helpful or maybe even insulting. Can you give our listeners a sense of what not to say, if you wouldn’t mind?
Then also the responses that you’ve found most helpful and this is not necessarily with accompanied death, but as you’re navigating end-of-life with somebody so close to you, a spouse or sibling or somebody like that, what were some of the responses that actually were helpful? And again, if you want to say never say this, feel free.
Amy Bloom: I want to say one other thing about that, which is that I really made a decision to the best of my ability not to be offended, not to hold it against people. We’re humans. We do a terrible job. We think we’re going to say something nice. We put our foot in it. It comes out terribly. It happens. Happens to me, it happens to other people.
I was just determined that I was not going to hold on to this with anybody, that it was bad for me, bad for Brian, or was bad for my karma. Just gotta let it go.
I will say, however, that saying to Brian when he was alive after he made this decision, “I Googled Alzheimer’s. It’s not that bad,” It’s not helpful. Saying, “Brian, my uncle had Alzheimer’s and I saw him at the party at Christmas and he was just having a great time on the dance floor. It’ll be fine.” Also not helpful. In general, pretending to have expertise you do not have is not a gift. Even if you think that you are expressing something kind and helpful since you don’t know what on earth you’re talking about, it might be kinder and more helpful just to belt up.
You want to be useful. Then you say things to people like, “I see you have a dog. Would you like me to walk your dog three mornings a week? Would that be helpful to you?” Or “Would you like me to come by and take a walk with so-and-so a couple of times a week?”
That is specific, it’s genuine, and I can call upon you for that. “Call me if you need anything,” although I know it is a natural human response, is utterly useless. The best thing you could do would be to face the fact that it’s utterly useless and that you don’t actually wish to help. In which case you can just say, “I’m so sorry.”
Dr. Denise Millstine: We recorded an episode with Catherine Newman, who wrote a book “We All Want Impossible Things,” which mentions the Amy Bloom story “Love is Not a Pie.” So that’s a fun shout out in that book. But that book is fiction about two friends navigating end of life, but is inspired by Catherine’s real life experience with her own best friend.
She said something very similar about the specifics of offering help that she had friends who said, “I’m coming over on Wednesday to clean your bathroom,” and that was the most helpful thing because she was never going to ask somebody to clean her bathroom, and she could, of course say, “No, you’re not,” but when people were very specific in the way they show up, it was the most helpful thing for her.
And I think that’s what you’re saying as well, to be very present. If you truly want to be helpful, be present in a way that is authentic and actionable and you’ll say, “Actually, I’m good with walking my dog, but if you don’t mind going and picking up the dog’s poop in the backyard, that’d be fantastic.” Then you know who your friends are, right?
Amy Bloom: You do. And one is always surprised. I lost both my parents and the number of times when the person who I thought would come to the casserole, not only didn’t come with a casserole, but didn’t phone, and the person who was the grumpy lady up the street to whom I had not said two words in 20 years, was there not only with a casserole, but like a set of dishes and a bottle of wine. You never know.
Dr. Denise Millstine: Amy, you mentioned that this is your first, and what you anticipate to be your only memoir, but I wonder if you’ll share with our listeners the healing process of the writing in case people are navigating something challenging and want to incorporate writing in their grief process.
Amy Bloom: I think it very much depends on your nature. I don’t think there’s anything magical about writing down. I’m a writer, so that was very comfortable. If I was a bricklayer, I probably would have gone out and laid some brick, but it could also be music. It could also be reading, it could be reading poetry, it could be looking at photographs. It could be taking a walk. It could be planting a tree in memoriam for that person and sitting by the tree.
I think there are a million different ways to heal if you’re lucky and can find it, and partially I think one is not better than the other. In fact, writing was not a catharsis for me. It was not a particular comfort. It was my job and it was the job that I knew how to do. I don’t know that it was any more comforting than making dinner for one of my grandchildren, which was also comforting.
The real healing process for me, I think, was certainly crying and typing, which I did a lot of. But the other piece was that very unexpectedly when I came back from Zurich, leaving Brian, COVID had just started. There were all way airports closing when I came back.
Within three weeks I got a call from my younger daughter who was in New York with her wife and her little girl, and they said: “Mommy, we have to work full-time from home. There’s no daycare, there’s no babysitters, there’s no childcare anywhere. And I said, “Well, come on up.”
It turned out that for me, being in the middle of life was the only important part of healing. It’s not what I thought I wanted. It’s not what I thought I was going to do. I was planning on crawling into bed, not coming out for about six months. That sounded great. I was going to have like a mini fridge in my room. I had a whole vision of it in which I would just go nowhere and do nothing and see nobody.
But life had other plans. And it turns out again, depending on your nature, but for me, being more involved in the world with people who loved me was probably the biggest healing that and planting a tree for Brian.
Dr. Denise Millstine: I love how you said that the people who are grieving really have to look into their own core and see what speaks to them and that it might be writing, but it might be one of the many things that you mentioned. In addition, we think of these events in life as being the one thing that’s happening, but you’ve just described how it wasn’t just this happening, the world was turning upside down and the family life goes on and that you did have to keep rolling with it, and in the end, there’s a gift in your family coming in and being literally in space with you.
Dr. Joan McGregor: One thing I wanted to put out there is that idea of respecting other people’s choices about end of life. This is something, when we talk about Advance Directives and if we ever get to Advance Euthanasia Directives, I really think people may not share our views, but it is respecting the views of others. And if you’re the person who has to carry it out, that you’re the designated decider, that you respect those people’s wishes.
That’s something that I think we touched on earlier, that isn’t always the case, but I think I know after having been the advocate for both my parents. I had to fight the medical establishment to try to remove certain kinds of care that I didn’t think they wanted. So you have to be a real advocate for people, and recognize that that’s the medical system, and again, it’s no indictment of it, but on the other hand, their default is to keep people alive for as long as possible.
And if you don’t think that’s what your friend or family member would want, then you really do have to fight for their wishes and just hold your ground.
That’s what I found I had to do. It’s painful because there is this kind of assumption that the good daughter or the good wife would keep people alive. You have to be thinking, “I’m not deciding for myself. I’m deciding what that person wants. As I say, not everybody is going to want the same things, and that’s great. That’s what that’s what we hope we can get to, is a place where people can get their decisions carried out.
Amy Bloom: I would also say that if you have, whether it’s a friend or a spouse or a family member, who does not want extraordinary measures at the end of their life, under any circumstances, the other thing I would say very directly is absolutely stand your ground and go home.
Dr. Joan McGregor: Yes.
Amy Bloom: Because they are not going to meet your requirements in a hospital. They are understaffed. They are overworked. Nurses are, to me, really the great heroes. And people don’t have enough time. And if you layer on top of that a default position in medicine for physicians, which is “life at all costs,” bearing in mind, of course, the person bearing the costs will not be the medical person making that decision, go home.
You have a much better chance of having whoever it is die in comfort as they wished if they are home, rather than that if they are in a hospital, least of all the hospital 50 miles away.
Dr. Denise Millstine: I hesitate to bring this up with a philosophy professor, but when you say that medicine is focused on keeping somebody alive, what you’re really talking about is keeping the heart beating, keeping the lungs moving. You’re not necessarily talking about continuing to live your life in a way that is fulfilling and meaningful. So we have a lot to learn in medicine, no doubt.
Joan, people who are listening, who are navigating difficult situations, how do they find somebody to look at the ethics, somebody like you or your colleagues? Can you just give us a couple of resources for our listeners?
Dr. Joan McGregor: I do think physicians have gotten better about talking with their patients. I still don’t think they’re compensated. That was one of the issues, is that there’s not a code, I think. Maybe they’ve changed it. For a while it wasn’t. So physicians wouldn’t do it because they weren’t getting compensated for that discussion. Lawyers draw up wills and so on, standardly have the sort of boilerplate templates. There are resources online, there are groups that work on this.
You Google it, there are great podcasts on this. I really encourage people, not only to think they want for themselves, but to talk to their family, talk to who’s going to be your decision-maker. Make sure they’re clear on what you want. These are tough conversations, but have the conversations because they’re going to most likely be your advocate because you will be able to speak at that point. With my students I make all my students, which I teach these large bioethics, with 150 pre-med students, and I make them all fill out living wills and I make them all take copies of their family members.
Because I tell them that the major cases; the Quinlan case, the Cruzan case, the Schiavo case, they were all young women in their 20s. So they always think, “Oh, it’s just an old person thing. I don’t need to worry about it.” No, it’s a thing we all need to think about. We all need to be thinking about what we want done if these things happen to us. I wish there were better resources. I think books like this start to open the conversation. I hope people will look for other resources. Take a bioethics class. That might be a little more than you want to do.
I know even my little local library here has a death discussion group where people meet and they’re talking about these end-of-life issues. I think there’s more going on than we think. So do connect up with groups that are having these discussions.
Amy Bloom: Often, I will also add to that, it’s often not actually an ethical dilemma. If your 80-year-old mother says to you, “Honey, when I no longer know your name or the names of the grandchildren, and I cannot read and I cannot walk, I would be ready for my life to end,” you have your directive.
The issue is not going to be ethical. The issue is going to be: A, how do I facilitate that? And B, what do I do with Cousin Bob who doesn’t think my mother should get to do that? Well, depends on how you see these things. To me, that would be Bob’s problem, and we would put him at the outer circle of the conversation. But these are interpersonal crises.
These are not, to me, actually abstract or ethical crises, because the ethical thing, it seems to me, is to follow the wishes that the person who is at the center of the story, the person with the illness as expressed, that’s the ethical thing to do. Everything else is our own losses, our own grief, our own inability to manage our feelings in the face of somebody else’s strong preference.
Dr. Denise Millstine: I think the take home point for the episode is to show up and have these conversations, even if they feel uncomfortable. One impetus for starting “Read. Talk. Grow.” is that if people feel that they can’t have the conversations directly about what’s going on between them and their family member, they could read a book like “In Love,” and they can talk about the book and in that way are able to navigate these conversations and hopefully open the door to then navigate how it applies to their own lives.
So I’m really hoping many people will read your book, Amy, and I want to thank you both for coming on “Read. Talk. Grow.” and sharing this conversation with me.
Amy Bloom: I’m very glad to be here and it’s a pleasure to be with both of you. I hope more than anything, whether people read the book or not, this conversation will lead them to have another conversation, however difficult. That was my goal for the book. So thank you both.
Dr. Joan McGregor: Thank you too, and I really enjoyed the conversation. And again, Amy, fantastic book. I really, really appreciate it.
Amy Bloom: Thank you both.
Dr. Denise Millstine: Thank you for joining us to talk books and health today on “Read. Talk. Grow.” To continue the conversation and send comments, visit the show notes or email us at email@example.com.
“Read. Talk. Grow.” is a production of Mayo Clinic Press. Our producer is Lisa Speckhard Pasque and our recording engineer is Rick Andresen.
The podcast is for informational purposes only and is not designed to replace the physician’s medical assessment in judgment.Information presented is not intended as medical advice. Please contact a healthcare professional for medical assistance with specific questions pertaining to your own health if needed. Keep reading everyone.
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