Caregiving and the Soul of Medicine

This transcript has been edited for clarity.

Abraham Verghese, MD: Hello. This is Abraham Verghese. Welcome to a new episode of "Medicine and the Machine," which I have the great pleasure of cohosting with Eric Topol. Today we have a very special guest, a man I've looked up to pretty much all my career. Arthur Kleinman is a professor of psychiatry and medical anthropology at Harvard University. He carved out new territory early in his career by creating the field of social medicine and medical anthropology, literally putting it on the map and training several notable students, including Paul Farmer, who've gone on to do great things.

Arthur is the author of many influential books. One that truly informed my thinking was The Illness Narratives.^[1] But he has a new book out called The Soul of Care,^[2] which we'd like to talk about today. Arthur, welcome to this podcast. Thank you so much for spending time with us.

Arthur M. Kleinman, MD, MA: Thank you, Abraham, for having me. I'm delighted to be here.

Verghese: To begin, would you tell us how you got into this field of medical anthropology and social medicine? How did it evolve that your career began that way?

Kleinman: I was one of those strange types who, when he went to medical school, could have gone into something else. I could have gone to graduate programs in the arts and sciences. I was always very interested in history and in social theory, and after I had been in medical school and then at the National Institutes of Health, I was sent to Taiwan during the Vietnam War. As a US Public Health Service officer, I became very interested in the issue of how medicine was carried out in different cultures. I was from the United States, and I was in Taiwan and saw a radically different healthcare system and distinctive ways of caring for people. So, since my wife was a China scholar, and I knew the Chinese language, I thought I should attend to this culture in a deep sense and become an anthropologist. And that's what I did. I went from Taiwan to Harvard, studied social and cultural anthropology, and helped develop the field of medical anthropology. I guess the distinction I draw, Abraham, is that you are, in my view, a great writer as well as an outstanding physician. I see myself as a physician but not as a writer, even though I've written about 40 books.

Eric J. Topol, MD: Only 40? Wow.

Kleinman: I am a William Jamesian, almost a footnote to William James. Remember, William James said that everything comes out of experience. My great curiosity was about experience. How do people live with suffering? How do they respond to it? How do practitioners of very different kinds in different local worlds, worlds across the seas and worlds neighboring each other, how do they do things distinctively? So I had that sort of focus on experience. That sums up my interest, with one caveat: to use experience in order to help others.

Verghese: That brings us to your new book, which is a real departure in the sense that it's intensely personal. I'm sure you wished to never have to write a book like this, and yet, The Soul of Care is such a gift. Without giving too much away, in this book you talk about your transition from being an academic and physician to becoming a caregiver. I just want to quote from a passage you write in this book. "Care is also about the vital presence, the liveliness, and fullness of being; about the caregiver and the care recipient. Acts of caring call that presence out from within us. Care does not end with death, but involves actively caring for memories."

Tell us about the genesis of this book. Then I'd like to shift this discussion for a bit to talking about care, because it's a paradox. Healthcare is the business Eric and you and I are involved with. And yet care, especially the way you construct it, is almost tangential to the discussion of healthcare and healthcare reform. So tell us about this book and how it came about.

Kleinman: As you suggested, this was a painful book to write. For a little over a decade, I took care of my late wife, Joan Kleinman, who had early-onset Alzheimer's disease. And not only did she have Alzheimer's disease, but it was a particularly frustrating type, because it started in the occipital lobes of her brain, which are responsible for, among other things, the interpretation of images. So she was functionally blind as well as suffering from dementia. This was very cruel because she was a visual person, a fine painter and calligrapher in the Chinese tradition.

As this awful decade developed, it was as if a veil of ignorance was pulled away from my eyes and I was seeing caregiving from the inside as a family caregiver. And I realized that, with all these decades of experience I'd had doing research on healthcare and being an active clinician, I really had lost the sense of what caregiving is for a family member. This was so striking, and powerfully so to me, that I felt I wanted to write a book that was at once raw in its personal nature—deeply raw, I think—but also in which I could generalize from my individual example to care more generally.

So, the first thing was, what do I mean by care? How is it possible, for example, to have healthcare without care, which is where we fit in the crisis of healthcare right now. By care, I meant just the kinds of things you read. I meant, first of all, the nature of the relationship that caregivers have with each other, since I believe that's the most fundamental dimension of care. It's a relationship. And it's a relationship in which, once we focus on the care, it's easy to forget about the care recipient—that is, the patient or family member who needs care, but who is just as important, if not more important, than the caregiver.

And in this relationship, as I've experienced it and looked at it cross-culturally, there is a kind of gift exchange. It is an exchange of gifts in an anthropological sense in that the care recipient gives the gift of their vulnerability and their need to be helped, assisted; in turn, the caregiver gives the gift of their involvement and their attention, which is tied, I think, to their presence.

We're all familiar with the criticism of medicine, that frequently doctors are so absorbed by the screen on their computers that they have their backs turned to the patient and are not present. But when you look at family care, it involves a kind of a deep presence. It's that relationship that's begun long before and will end later. And it's not just a one-time shot but something of intimacy and tension, because even for the most loving and committed caregiver, care is tough work. It's hard physical work. It's tough emotional work. And it's moral work as well. So, besides presence, there's also the issue of enduring. You have a long illness experience of a disorder that cannot be cured but has to be managed. In that long illness experience, I really don't think any of us are truly resilient, where we're like rubber bands and we simply spring back to what we were before. This experience is so demanding, so difficult. The real issue, and it's one that we don't like to talk about in the United States because it doesn't have a kind of Hollywood ending, is enduring. How do we endure? That's what I felt throughout my 10 years of taking care of my wife. I was challenged to the core and wasn't sure I could endure. I felt at times that I was enduring the unendurable.

So, what is enduring about? How do we keep going? Because of my own experience, I looked at and spoke with many other family caregivers and was astonished by how many of them felt they came to a wall they couldn't get over, and yet because of their love and their concern for the person they were taking care of, they got over the wall; they made themselves get up, get over the wall, and keep going. I was impressed with how enduring is critical to care.

And then the last part—it's surprising that I learned this from my personal experience; I should have known it from my professional experience—but care does not end with the death of the person you're caring for. You're caring for memories after that. A clinician also cares for memories, remembering how to think about the care and how to perhaps use a particular case to improve care in the future. The family member, of course, is rebuilding a story about one's life and one's family. Central to that is the memory of the care you gave and what you've gone through. The attention to those memories, their ordering, the time we spend developing them becomes a very important part of our lives after the practical acts of care no longer need be given because the person has passed. Those are the kinds of things I was concerned with.

I came to realize two things: First, that care was disappearing from clinical medicine, that clinicians have become so tied up with technologies, and so tied up with delivering the technologies effectively, that they are forgetting about the role that care plays. And second, there's some question as to whether in the future, even in families, we'll have care, given the limited time that family members have today, the fact that both husbands and wives work—this was women's work in the past—and men in our time, no matter how "woke" and liberated they claim to be, are not picking up the task of care.

Topol:The Soul of Care is an extraordinary book and, in many ways, a gut-wrenching story. You've defined care so elegantly. The other word, of course, is "soul." You captured this well in the recent Lancet piece you authored in August.^[3] I want to read one sentence from it. It's about the soul of medicine, as you wrote in The Soul of Care. You wrote, "I find the expression 'soul-less' a resonant one to depict what is happening to caregiving in medicine in our times, where the health system's goals of efficiency and cost-effectiveness, new technological requirements that absorb the clinician's alertness and attention, and the sheer pressure of insufficient time to listen and explain have a dire effect on providing the best of care." Can you amplify on that?

Kleinman: I think that is, in fact, the case. My colleague, Atul Gawande, has written a terrific piece^[4] that you probably read in The New Yorker about the Epic system, Harvard's electronic medical record system. It was developed without the idea of care in mind, and Atul pointed out that it is so complicated, so difficult to use, that the clinicians spend virtually all their time trying to make sense of it, and they use it to provide information about the patient that is critical to the treatment. So in a setting like that, the whole attention of the clinician is away from the patient.

The second thing that's happened—and Abraham, you may be the expert on this, but as a consultation psychiatrist, that is, a psychiatrist who works with people in internal medicine and surgery, I've been impressed by how internal medicine residents today seem to distrust their clinical skills of physical examination and want to jump right away to objective test results that come from the various machines we work with, which are more precise than we can be with auscultation and other acts of physical diagnosis. Yet, when physical diagnosis is done the way you do it, and the way I feel it should be done, it is a wonderful example of caregiving. It's the laying on of hands, the supporting of the person. It's the resonant sense that we're in this together, that I'm here with you. That's not the way I'm seeing the physical exam being carried out today. It's much more perfunctory. It's a sort of run-up to doing the tests that are more precise. The physical exam has lost its place as crucial to the actual caregiving through touching and connecting. That is a part of my concern.

Another part of my concern is that when you start a clinical interaction in medicine, bioethicists have clearly pointed out that the first actions are acknowledgement and affirmation. The doctor acknowledges and affirms the patient for being there legitimately with a problem that needs attention and affirms their suffering. And in turn, the patient affirms the doctor's right to explore their body and to ask questions. I think if you have your back turned to the patient, if you're focused on the technology of the computer, it's very difficult to establish this acknowledgement and affirmation of the humanness of the person. Hence, you begin the doctor-patient interview without that human connection being acknowledged and affirmed. Frankly, I think that's disastrous.

Verghese: I'd like to ask you about something I found to be extraordinary. If you plot the course of your wife's illness, the trajectory of it, medical diagnosis was a small element of it early on. But then if you look at the percentage of time of people who really mattered to you and your wife during this long course of illness, very few physicians are involved. Most of them have bit parts that are often detrimental to the care and not necessarily helpful. The most important individual you acknowledge again and again was the professional caregiver who worked with you. What are we going to do as a nation when we talk about healthcare reform, when we need much more, from the sounds of it, from the professional caregiver and much less from the high-tech stuff we spend a lot of time on?

Kleinman: It's a great question. I could not have taken care of my wife for 10 years, doing the things I had to do, if it weren't for the assistance of a terrific home health aide. This was a woman of Irish background who came from a family in which there were multiple generations of home health aides. She was just great with Joan. Not only was she great in helping—she worked 5 days a week, 9 to 5—but she pointed out to me that I worked 2 full days on the weekend and from 5 in the evening to 9 in the morning, 5 days a week. The respite she gave me, the chance to get away and do my work, made me a much more successful caregiver. In fact, I don't think I could have done it with without her. I lucked out.

The astonishing thing was that the medical specialty, neurology, which is responsible for patients with dementia, the neurodegenerative disorders, and stroke, is organized around diagnosis and a few medications, most of which are limited in their effectiveness. But the profession itself seems to have come to a conclusion that has nothing to do with aftercare. Some of the great neurologists in the country are at Harvard Medical School, and they made the diagnosis of Joan's Alzheimer's disease at least a year before it probably would have been made otherwise. They all wanted to help me; they knew me well and wanted to help me. Not one said anything about the care I would have to provide and what Joan would be going through. It astonished me. No one recommended a home health aide for me, which, as I just suggested, turned out to be absolutely crucial. And no one said anything about how I'd have to reconfigure the house so that Joan would be more comfortable there and I could take better care of her. No one mentioned anything about what the day-to-day living experience would be like, and where I would need assistance and how I could get it. And that was astonishing.

I went back to certain of my neurology colleagues and I realized that they just didn't see this as their purview, which is sad. Nor had they, as far as I could see, organized for Alzheimer's the kind of care team we take for granted in the area of oncology where, if the oncologist can't do it, there's a social worker, a physical therapist, or someone else who will step in to provide the kind of care that's needed. This is a huge problem for the neurodegenerative disorders. And I don't see an easy solution to it. In fact, I think it may get worse.

For example, who are the home health aides? By and large, they are poor women, often women of color, women who do not necessarily want to go into home healthcare but it's the only job open to them. This is certainly true of recent immigrants to the United States, who often dominate the field in Boston. It's primarily Asian immigrants who do this. And yet they do a remarkable job. Along the way, in both homecare and when Joan had to go into a cognitive care unit, her support from home health aides and from health aides in the clinic was just tremendous. They pick up where physicians fall off. But they're decreasing in number as people find that they can do other things, make more money—it's so poorly paid—have more status, and so on. They're dropping out of home healthcare as soon as they can.

And we don't even have good studies. As a researcher, I was astonished to discover that we have hardly any studies that tell us the content of the work that home health aides actually do, or how well they are prepared for it, and how well they deliver it. All of these things struck me as a sign that care is not in the minds of the people who organize the domain of healthcare for dementia and neurodegenerative diseases generally.

Here's another part of it that was astonishing to me, as I began to think this through. We're constantly talking about the quality of care, but we have no measures for quality of care. We don't measure relationships. We don't measure explanations. We don't measure listening. We don't measure skills in touching and supporting someone. We don't measure any of the things that are central to caregiving, and yet we claim quality care. So what do we mean when we say that? We're essentially substituting institutional measures of efficiency for measures of care. I think if more people were aware that we don't examine quality, they would be more concerned about this and what I see as a great crisis.

Verghese: I'm struck that in Eric's latest book, Deep Medicine, ^[5] he talks about how, in a way, machines have eclipsed us in terms of capability; at least theoretically, machines have gotten to that point. Yet, it indicates that this is the moment for us to get better at our humanness, so to speak. In a way, Eric, I think you were speaking very much to this new frontier we've managed to dodge because we've been so busy with our diagnostic instruments and therapies. But we have to come back to this kind of humanness because the machine can never do any of this for us.

Topol: That's right, Abraham. And that's why you grabbed me, Arthur, with the term "soul-less" and how medicine has moved in that direction. In fact, as you pointed out, we don't even talk about soul, no less think about it. Time is a big factor, the gift of time. You go back to the neurologist who didn't talk to you and your wife about what was ahead with her condition and your caregiving. A lot of this comes down to the reality that there's so little time to connect. The exam is another part of that, as you've mentioned; if we can restore that time, do you think we could get the soul back in medicine?

Kleinman: I believe so. First of all, you and Abraham are outstanding examples of the fact that we have practitioners who are able to bring the soul to bear or tend to it. But I think we have to try at many different levels, and to be honest about the lack of resources. I begin with families. Family members who provide care are providing it uncompensated. They need to be compensated. I think the country will come to this recognition laterally, after we begin to realize that if there were a 10% decrease in the number of families who care for people with dementia and neurodegenerative diseases, end-stage disorders of every kind, it would overwhelm all the hospitals, all the nursing homes, and all the facilities we have. So we must keep this going.

Second are the home health aides and long-term care insurance that goes with it. We don't provide those things. If we did, we would have a different family setting. They are provided in Japan and in Scandinavia. Then we think about medical school itself and the practice of medicine. In certain of the German medical schools and in a few of the Dutch medical schools, before the medical students start medical school, they spend a week or 10 days in the homes of families with patients who have serious end-stage disorders, very serious disabilities, and chronic conditions. They're expected to deliver care of a family kind. Now, these are medical students; they're just starting, and they're doing the cleaning, the washing, the bathing, the feeding, etc. I happened to have been a visiting professor at Leiden University in the Netherlands a few years ago, and I spoke to a number of their faculty who had gone through this program. They told me it was the single most important part of medical school.

We need that in the United States. It would remind doctors that it all begins by seeing the life-world in which illness is experienced. Recently, the National Academy of Medicine put out a report called "Families Caring for an Aging America."^[6] It pointed out that it is commonplace for an elderly patient to have a surgical procedure and to return home after 2 or 3 days in the hospital with two tubes coming out of the abdomen, which no one has explained to the family—what the tubes do and how you take care of them. And the family is petrified that they could infect the patient, that they could do something disastrous in the care of the patient, simply because no one explains the care to the family.

Right through the healthcare system, if the chair of an academic department of medicine or surgery or psychiatry demanded that the service chief in cardiology or nephrology demonstrate high-quality caregiving practices, then that will be modeled by the rest of the clinical team, down to the medical student. What is modeled in our time is the opposite of that.

We've basically turned over the clinical teaching of medical students to residents. The three of us were all residents. I remember my residency at Yale; when you're a resident, you're a survivor. You want to get out of the damn hospital. You're taking all the shortcuts in order to get out, and in so doing, you're giving a reverse message to the medical students. They've learned all of these things they should be doing, from taking a careful history to demonstrating empathy, and you're doing all the opposite things. So they come to see that if the resident is doing it, that's the way it is.

We have to change the way we teach medical students. For the past 5 years or so, I've been giving lectures at many medical schools across the United States, and I've been impressed with the fact that virtually every medical school is trying something new in regard to training medical students to be more human in their care. Of course, everyone is doing something different. But this is promising to me. There's an awareness that we can't go on like this. We have to return to certain core ideals of healthcare in which caregiving is crucial and in which doctors are able to participate.

I think we're not going to let doctors off the hook in the future. I was impressed by the experience with my wife, and by the number of family members I encountered who were taking care of their family member with Alzheimer's, all of whom felt frustrated and angry—frustrated by how difficult the care was, and angry about the fact that the professional medical side seemed cut off from what they were experiencing. That's the source of my optimism.

Verghese: Arthur, I think your book is going to be a siren call for change. You've been the frontrunner of new ways of thinking for so many years, but this may be your most important legacy.

I want to read the last sentence of the book, because it's so powerful. It's a bit about writing and it's a bit about you: "I am letting go of Joan by completing a long-drawn-out grieving process with this living testimonial. And in another, equally uncanny sense, the writing has enabled me to allow my old self to slip away, and to be replaced by the author of a book, this book, who is not only a carer of memories but decidedly a different human being."

You truly have captured this personal transformation, but I think it's going to help all of us to plot a new course, because you're right—we definitely need a sea change in the way we give care.

Eric J. Topol, MD, is one of the top 10 most cited researchers in medicine and frequently writes about technology in healthcare, including in his latest book, Deep Medicine: How Artificial Intelligence Can Make Healthcare Human Again.

Abraham Verghese, MD, is a critically acclaimed best-selling author and a physician with an international reputation for his focus on healing in an era when technology often overwhelms the human side of medicine.

Arthur M. Kleinman, MD, MA, is a founder of the field of medical anthropology. He has written over 40 books, including The Illness Narratives: Suffering, Healing, and the Human Condition. His latest book is The Soul of Care: The Moral Education of a Husband and a Doctor.

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Cite this: Caregiving and the Soul of Medicine - Medscape - Nov 01, 2019.