Dr. Patricia (Tia) Powell is Director of the Montefiore Einstein Center for Bioethics, Director of the Einstein Cardozo Master of Science in Bioethics program, and Shoshanah Trachtenberg Frackman chair of biomedical ethics. She is also a Professor of Epidemiology and Psychiatry at Montefiore Health System and Albert Einstein College of Medicine. Her work focuses on dementia, end of life care, public health disasters, and LGBT (lesbian-gay-bisexual-transgender) issues.
She graduated magna cum laude from Harvard-Radcliffe College before continuing her education at Yale School of Medicine, where she won the Parker Prize. She completed a general adult psychiatry residency program and a consultation-liaison psychiatry fellowship program at Columbia.
Since then, she served four years as Executive Director of the New York State Task Force on Life and the Law; worked with the National Academies of Sciences, Engineering, and Medicine; and advised for the Center for Disease Control and Prevention, and the United States Department of Health and Human Services.
Her first book, Demetia Reimagined: Building a Life of Joy and Dignity from Beginning to End, was released by Penguin Random House on April 2, 2019. Dr. Powell graciously agreed to a telephone interview about her journey as a physician-writer. This interview has been edited and condensed.
Tell me a little bit more about yourself and your training, and how you got to doing bioethics.
A million years ago, I was a philosophy major in college and switched to psychology. My interests were always including questions about how do we know what’s the right thing to do, what’s the right way forward. When I ultimately went to medical school, I really did become extremely interested in [those] questions. I studied a case that has really kind of haunted me throughout my career.
I went to Yale as a medical student [and] I wrote my med school thesis on the case of a man named John Storar. He was developmentally severely delayed. In his late fifties, he developed bladder cancer. His mom said, ‘Absolutely, please treat him.’ Treatment didn’t work and doesn’t always work now either. So it became clear that he would die from his cancer. As he approached the end of his life, he was very anemic and so they decided that they needed to transfuse him a couple of times per week. So they went for that for a while. But you couldn’t really explain to him what was going on. You had to tie him up and restrain him. It’s not all that easy to transfuse somebody like that – a couple of hours at a time, a couple of days of the week – because it’s bladder cancer. So not only is he not making new blood cells, but he’s peeing them out. The man’s going to be anemic.
So she said, ‘You couldn’t cure the cancer. I understand that happens, but why are you doing this? You’re not helping him. He’s going to die of cancer. I just want you to make him comfortable.’ It’s long enough ago, the 1980s, that it’s hard for us to really grasp it now. This was really before people were thinking [about] palliative care. They [thought] you can’t die of something that people can fix.
The New York State highest court said this guy [is] developmentally delayed and has an infantile way of thinking about things. [They said] he’s just like a baby who has got a mismatched Rh factor. We transfuse those babies and they do great. So we obviously need to transfuse this baby too.
I read that in medical school going, ‘Wait! What? That’s the stupidest thing I’ve ever heard of.’ I thought the grownups were in charge here. I thought somebody would say, ‘This woman loves her child and she’s trying to do right by him – and she has. We should support her.’ To the contrary, [someone] who didn’t know this person made a decision that was idiotic and that’s a decision that held. So the guy dies getting restrained and transfused to the end. It really was like a lightning bolt for me like, ‘Wait a minute. Just because there are all these smart and senior people here, it doesn’t mean we get it right. To the contrary, we can seriously get it wrong. So more people should think about this.’
So I basically got the bug for bioethics while I was still in medical school. [At the time,] it couldn’t really be a career though. I went to residency at Columbia. I’m a psychiatrist by training. I even did a fellowship in CL [consultation-liaison] psychiatry there. I actually started the ethics consultation service at Columbia right after my fellowship and I’ve basically done more and more substantial amounts of bioethics throughout my career. And now I’m in my early sixties. So that’s my career. [Laughs] And now I run the Center for Bioethics at Einstein.
I’ve been very lucky. I really had such incredible freedom and opportunity to do the things that felt to me to be important and meaningful and worth doing. Not everybody gets to say that, so I feel very lucky. Bioethics has been a huge part of that for me.
Did your love of ethics inform the specialty of medicine you went into?
I think so. I loved internal medicine, but I think psychiatry is certainly at home with some grey area. In that sense, I did feel drawn to psychiatry.
Have you always written throughout your career? Or was there a moment at which you decided to start writing more prolifically?
I always loved to write, and I always found writing incredibly difficult. I loved writing my thesis in med school, but it was really really hard. I’ve written articles bit by bit, and throughout my career. But it was definitely tougher. As a young physician, I was really putting down a lot of hours just in my clinical work. Ultimately, I was lucky enough to have a family. That really takes a lot of time. So I sort of tucked in writing as best I could and really missed it and missed the opportunity to do more.
So this is the first book I’ve written and it’s kind of embarrassing to me that I do it towards the end of my career. But it still really meant a lot to me to be able to do it. My mother died about maybe seven or eight years ago and my father had died before that. As a middle aged person at that time, its not so odd that I would lose my parents. But it did in me create a kind of sea change as I think it does in many people, where you feel like, ‘Oh. I must be the grown up now. There are no parents. I am the older one.’ It made me really think, ‘What is it that I’m meant to do? What is it that I’ve not done that would feel important to me?’
I thought bioethics has really kind of fallen down on LGBT issues, and I want to say the same of psychiatry. In my training in psychiatry, essentially the lesson was, ‘Oh, yeah. We used to think it was a disease to be gay, but we don’t think that anymore.’ So you know, enough said. There was no examination of how psychiatry and medicine got that wrong. What were the consequences to keeping our patients – and, in some cases, our unwilling patients? What about the history, man? You can’t just go walk on and go, ‘You know, I said I was sorry.’ [Laughs] So I thought there needs to be more thinking about LGBT issues.
At the same time, I also felt uncomfortable about the questions that bioethics had brought to bear regarding dementia. There’s a lot of talk about advanced directives and some good work on a couple of issues, but I also felt it didn’t answer questions I had. I felt that I was unprepared. Even work in psychiatry and bioethics didn’t prepare me to help people think through issues that seem very pressing and very important to them.
So taking on those two issues, I thought I’m going to learn some more and figure out what I need to do to be useful in those domains. That’s kind of what I mean by saying I’ve had an incredible amount of freedom. And I’m not really quite sure how I got away with it. It may be partly—but not necessarily—that nobody thinks bioethics is all that important. So they didn’t really constantly watch me. I have done some work on both of those issues and the book falls into that category.
And so it seems that there were two different routes that you could have gone, either talking more about LGBTQ issues or focusing more on dementia. Was there something that kind of tipped the balance towards dementia at that stage?
Well, I mean I’ve done some of each. I did a special issue for the Hastings Center, a report on LGBT issues. I’ve written certain pieces on LGBT issues, including actually with [Dr. Shapiro, my adult child], which was really fun. I am an ally for the LGBT community, and I wanted particularly within bioethics to kickstart that conversation and then continue to participate. But I’m also not sure that the lion’s share of that work should be done by me. It’s not like I don’t have decent opinions and can express them, but I think I can use my leverage and my seniority better to say ‘Do you want a physician to speak on LGBT issues? How about this member of that community who is also a physician? Let’s get them up here.’ I don’t want to be – I don’t know what the right word is here – colonial. I don’t want to come in and say, ‘Oh, I know all about this. Let me tell you.’ So I want to promote that voice, but I don’t know that they need to be my words all the time.
I want people with dementia to be able to speak up, but it’s pretty hard to use that voice once you’re really ill. As a person who has this in my family and as a person who may go this direction, I’m really comfortable taking the mic on that one and saying, ‘Okay. Here’s some more of what I think we need to do or think about.’
That seems like a very responsible approach. When it came to Dementia Reimagined, what was the process of writing it? I imagine that there’s a lot between coming up with an idea of what you really want to focus on to actually getting a book deal and publishing.
Man, I didn’t know anything! I’m an academic. I thought I’m going to teach a course on dementia. The courses I teach are usually around 12 weeks long. So this is going to be so easy and so awesome. I’m going to do each of those weeks. That’s going to be a chapter. Easy peasy, I’m going to have a book. So you start talking to people, [and] actually you can do that. That is an academic book. That is a book that will be read by the perhaps not very numerous persons who would like to read an academic book about bioethics and dementia. And that can be a perfectly good thing to do in the world.
But I realized that wasn’t actually what I wanted to do. I actually wanted to talk to regular people, educated readers who aren’t necessarily academics. I wanted it to be a book that somebody would read voluntarily, not something that was assigned to them. That’s a really different project. Then you need to be in the commercial world of book writing, which I was completely ignorant. Fortunately, I have some friends who do that. [They said] you have to get an agent and you have to have a book proposal with like four chapters of the book and then an outline for the rest. And you can’t just like write a book and send it to like you know some big publishing house. It’s not a thing. They don’t read it. They will only look at a book submitted by an agent and most of the agents, if you go to their website, say we don’t take unsolicited books. Is this a road to hell or something? [Laughs] How do you do that? So it’s pretty crazy.
I talked to a bunch of different people. I sent the book to various agents. Finally, I was talking to a colleague and she said, “Oh, I have an agent. I can write him and maybe he’ll look at your book.” So that’s the person who ended up taking my book. He did end up getting the book read by a person who then rejected it. But it turned out to be a person where we have a friend in common. So I wrote her a note saying, “Listen, I am a first time author and I totally don’t know how to do this. I’m in no way trying to convince you to take my book. I appreciate your judgment. You are a professional. But I don’t really know how to do this. Would you be willing to have a conversation with me and say what you saw, what you would want, where a book like this might go? Because I’m just not getting it. You know, I’ve either been rejected or ignored by everybody.” So I sat and had tea with that person. And she was totally helpful and we had a great, really fun conversation where she said, “Tell me why this book? What is it that you’re hoping to do?” And then like two hours later, she wrote my agent and said we’ll take it. What? [Laughs] So I was incredibly lucky. I know so many people who could write a book and they’d be great at doing it, but it’s really hard to do it. I’m not quite sure how to advise somebody to get over those fences because it was just a series of quirks that got me through.
Thank you so much for providing more insight into the process. And in total, how long did it take from you know getting to the point of saying you know I want to write this book to getting it accepted by an agent?
I had the idea that I wanted to write the book in 2013. I had written four chapters, I had an outline, and I sent it around for months and months before somebody finally accepted it. 2015 maybe is when it got accepted by an agent, then a publisher some time after that. The writing was going on all the way through there.
I was able to get a six month sabbatical, and I couldn’t have written a book in six months, but that was really crucial. I also couldn’t have written a book without that six months to really kind of hunker down and like chain myself to the desk. I threw out a bunch of what I had used in the sample and completely revised those chapters. It really changed radically. By the end of the six months, it was mostly written and certainly it was mapped out. And then I just kept on working on it basically nights and weekends. I would sort of tackle a chapter and do the research for that chapter. And sometimes when I had written it, I’d realize this doesn’t go in this chapter. So it would either go in another chapter or, more painfully, it would go nowhere at all.
I think September of 2017 I handed it in to the editors a full, complete thing. Then they keep it for like four or five months and they edit it and hand it back. And you have to go through it all again [worrying] about like, this part’s not clear, that part’s too long. Major editing and stuff.
And then it’s basically been done for more than a year now. So then they tinker with various final things and publicity. And so it takes a really long time.
How did you come upon the story of Dr. Solomon Fuller [ – a Black doctor from Liberia who made significant contributions to the study of dementia and practiced psychiatry, neurology, and pathology in the United States]?
I wanted to look really closely at the history of dementia because one of the questions that I had was, ‘Why did we never think about this as a disease course?’ It was interesting, this phenomenon of something that’s right in front of you, but you can’t see it.
I decided I would go back through what was originally called the American Journal of Insanity, which is now the American Journal of Psychiatry. Good name change. [Laughs] I went back to the original issue and I started plowing through. Was there any article starting with that initial issue that looks to me like it’s about dementia? And there was Solomon Carter Fuller. When I saw his work, it was unbelievable.
Most of the articles in the American Journal of Insanity in 1911 would be ridiculous to us today. Some were good, clinical observations [that were] ten pages long [with] some references. A lot of it is really embarrassing – racial profiling, you know, ‘Why are Hebrews so crazy? Why are Negroes so happy?’
But Fuller’s work is unbelievable. I mean, some of it’s a hundred pages long and he’d have beautiful photographs taken from his microscope that you could look at today and say that’s beautiful work. I mean, just incredibly tight science, very well reasoned, zero speculations. He is really a man of science. I a little bit fell in love with Solomon Carter Fuller. Unfortunately, he died before I was born, so it didn’t really work out. [Laughs] I just was really, completely captivated by him. An undeservedly unknown character in the history of science.
Because we know of Elois Alzheimer, but I don’t think I’ve actually encountered Solomon Fuller’s name at all.
You wouldn’t have. I’d like to change that. I’d like everybody to know about this guy. He’s very interesting.
[Regarding] the ethics of treating folks with dementia and respecting their autonomy, I was wondering if you knew of any policies that [readers should] focus on.
The Americans with Disabilities Act does lay down a kind of rough framework. For persons with disabilities – dementia’s an illness, but it creates standing disabilities and functional deficits – you need to be able to provide services…in the least restrictive environment possible. Your first instinct is not to say, ‘You can’t do everything so we should obviously lock you up. Keeping you safe is more important than listening to what you have to say.’
But the challenge in medicine and in bioethics is basically the four bioethics principles. The two main ones are really autonomy and beneficence. Autonomy essentially belongs to people who are ill, our patients. And that has to do with them accepting care or rejecting it, really thinking about their values and preferences [to determine if] they should go forward with some course of treatment. Beneficence is the principle that most belongs to health professionals. How do we do good? How do we help this person? Autonomy and beneficence are often in tension.
Dementia is a very slow moving disease. Often a person has it for ten, twelve, fourteen years. Many people, when they think of dementia, think of the very end stage. They think of someone bedbound, who’s mute, who can’t swallow, really who is at the end of life, who is approaching the end of fatal illness. The vast majority of people with dementia are in the earlier phases.
So for the ten years before that end stage, there are a lot of people who have preferences, who have wishes, who are by and large out in the community. How do we recognize that you may be vulnerable, people may be trying to take advantage of you – get your money, tell you what to do, restrict your freedoms – but how do we support and promote your freedom, your dignity as an adult, and your independence as long as possible? We do want to help people and protect them, but how do we do that without caging them?
I don’t believe that physicians are really well versed [in that,] and that has huge implications for patients. In terms of dementia, there’s also conversation about one’s right to end one’s life. And I was wondering if you could comment about that.
We have laws that make physician aid in dying legal in, I think it’s six states now? All of the legislation that’s been passed is basically on the same model. It explicitly excludes anyone that doesn’t have decision making capacity. So right now, even in states where physician aided dying is legal, no one with dementia qualifies. You need to have an estimate of six months of life or less because of your terminal condition and you need to have decisional capacity. So if you have dementia and you have decisional capacity, no one’s going to say you only have six months left to live – unless you have cancer, in which case you can get the physician aid in dying because you have cancer. And if you have six months left to live, you also certainly will not have decisional capacity. I personally do not think that’s going to change anytime soon. I think the advocates are very sensitive to questions about euthanasia and including people with disabilities.
I do think that there are people with dementia who are very upset about it and who are very worried, and who may consider taking their own life. I don’t think you would be able to stop everybody who wants to from doing that. Some people think it’s not worth it for me to be around and I don’t want to see the end of this.
But what I think we as a society owe to older people and people with dementia is a better option. Like we should make it not be so scary and not so awful. People should [be able to] say, ‘Well, at least I know actually I won’t be in pain, I won’t be homeless, I won’t be in a dreadful scary nursing home that’s a place I don’t want to be in.’ There’s a lot of people [living with dementia] now. There’s going to be more and more people in at least the next twenty, thirty years. So we have an obligation to make options available [such that] that death is not the only thing that seems reasonable to consider.
And would you say that there are certain communities that are really getting that right, in terms of providing options for people with dementia?
Every life should have some joy. So what would that look like in dementia? And I know people sometimes look at me as if I have truly lost my mind when I say that. But I do know what dementia looks like. I’m a physician, my mother had dementia, my grandmother had dementia. Even so, it shouldn’t be this horrible, joyless existence. And I think it’s possible to create joy within dementia.
I do think there are great programs. I talk a little bit about MIND at Home, a program at Hopkins, in the book. There’s a program [of] physicians at Einstein working in collaboration with people at Mount Sinai called PATH, which looks to create behavioral interventions to make life more comfortable for people with dementia and their caregivers in the community. So that is for the earlier phases.
I do think that a lot of people will probably need a nursing home at the end of their days because the care just becomes too daunting. And there are efforts to really think about what would that look like. There’s the Green House batch of nursing homes. They’re very small, they have like only ten or 12 people, and they’re all on one floor. And there’s a communal kitchen where you can…help with the cooking [which] actually is very joyful for a lot of people. One thing we’ve done really badly is use medications exclusively in people who get agitated because they have dementia. So part of these nursing home that have white picket fences and little flat porches are trying to do is to be able to calm people without using antipsychotics. And that’s actually really important because they’re very toxic to use.
This is a really illuminating conversation and a lot for our readers to be thinking about too. So thank you so much. I just wanted to see if there was something we might have not covered that you felt was important to talk about.
The concept of optimism is really interesting. As it says in the book, I am not by nature an optimistic person. But what I really like about the concept of optimism is if you act as if there might be a solution, you look for a solution. If you assume there can’t be one, you won’t look for it. You’ll just stop right there. Couldn’t a life with dementia be a flourishing life? Could it be a life of happiness and some contentment? We’ve really not gotten around to asking the question before. And I don’t pretend that dementia is not hard for the people that have it and for the people that take care of them. But I never really asked what would a good life with dementia look like. So that’s really the conversation I’m trying to spark. That’s the conversation I’d like to see happen before I need that help.