Write Stuff: Harold Braswell, Ph.D.

My research approaches bioethical topics from a perspective informed by the disability rights movement, as well as the related academic field of disability studies. My research focus is on disability at the end-of-life, in part with regard to debates about what’s known as the “right to die,” but also more broadly with regard to the design of our end-of-life care system.

My book is called The Crisis of US Hospice Care. It argues that in the U.S., our hospice system is in crisis because of its dependence on the unpaid labor of family caregivers. Though I believe family can and, in some cases, should be involved in the delivery of end-of-life care, our country has given them far too much of a burden. This is bad for dying people, for their families and for hospice professionals as well.

Well, I’m American, and as scholars Eric Foner, Corey Robin, and many others have argued, freedom is the dominant term in which Americans make political demands. I wanted my book to be politically impactful, so that was part of it. It’s also a term that I feel very personally, much more so than something like dignity or solidarity. So I think the American context is very crucial.

Beyond that, I would say that bioethical debates about the end of life are often framed in terms of “freedom” or, if not, then “autonomy” which though philosophically distinct often seems practically the same.

These debates are in my opinion narrow to the point of being harmful. It’s a denial of freedom if someone can’t get lethal substance, yet if they’re locked in a nursing home the term somehow never comes up—even though that’s a much more widespread problem.

I hate this. And it’s a hatred, I guess, about how freedom at the end-of-life is generally discussed. The limitations of that discussion, and the people that they hurt, made me criticize freedom, but perhaps also cling to it somewhat stubbornly. I don’t think you can adequately discuss the harm being done to dying Americans without that term.

My mom was diagnosed with cancer when I was in my late twenties and she died shortly after my 30th birthday. She was in New York and I was in Atlanta doing my Ph.D. I flew back to be with her but I was geographically limited and also limited by the situation.

My father, God bless him—now also dead—was caring for her and he was very territorial about this. He wouldn’t let anyone in. Perhaps this was because we (my other family members and I) did, truthfully, all feel that he was struggling to care for her, but, despite being well meaning, he was actually doing a negligent job.

I don’t know. But that was a lot of my experience as a caregiver: feeling overwhelmed, betrayed and inadequate as I tried to reason with my father about how you couldn’t leave a frail demented woman on the sidewalk in front of the diner while you went to find parking. I was never convincing enough.

I considered reporting the situation, but another family member eventually forced—a term I use deliberately—them into assisted living. That stabilized things, but assisted living situations, though expensive, are not great for dying people. My mother had a medical emergency and she died at the hospital, alone. 

I was already researching at this point but the situation attuned me to how complicated it was to be a caregiver, even in a relatively privileged situation, which my family’s was. And as I was writing the book, six, seven years later, I wanted to tap into that situation in order to remember what it felt like, and to have that very sad, personal quality infuse some of the writing as well.

The book blends history, ethnography, and bioethical philosophy. I did archival research at Yale, which was the starting place for the first hospice in America, Hospice Inc.

I also did ethnographic fieldwork—both interviews and observation—at two end-of-life care facilities located in Atlanta: a local branch of a national hospice organization and a Catholic nursing home that provided exceptional end-of-life care. I tried to bring this historical and ethnographic material together and make it relevant to ongoing debates in bioethics about freedom at the end-of-life. To do that I had to work within these debates to create space for material that most bioethicists — very unfortunately in my view — frankly don’t care to know even exists. So that was the philosophical piece.

It’s an interdisciplinary project, because it’s a topic that does not fall into any one discipline in the academy. I was lucky to have found a great Ph.D. program at Emory  University to support the work and to have found a home at our own interdisciplinary Albert Gnaegi Center for Health Care Ethics here at SLU.

The U.S. hospice movement was very different from its progenitor the British hospice movement. While in England the family was viewed with some suspicion in being the primary caregiver, in the U.S. that was much less so. Initially this was for clinical reasons.

But very quickly it became because of money. Hospice needed money, and potential founders were mainly concerned with reducing the cost of end-of-life care. So the family shifted from being the best clinical vector for care to being a mode of cost savings.

In theory, it could have been both, but the pressure to save money by unpaid familial labor became so great that it impinged on the benefits necessary to support families in caregiving. U.S. hospice leaders understood this, but they were in a bind.

So we created a hospice system that was far too dependent on unpaid familial caregiving. Hospice leaders understood this in 1982. And we understand this now. There have been several journalistic exposes of this, and the Institute of Medicine admitted as much in its 2014 report Dying in America.

So the takeaway of my book is that using the family to save money created a crisis in U.S. hospice care, that we’re currently living that crisis, and that without major reform it will be impossible for us to get out.

The debate about freedom at the end-of-life has been both incredibly individualistic and incredibly linked to the infliction of death. It’s basically a debate about the degree to which dying people have the right to end their lives. This is not a bad question. But it’s absurd that it’s the central question, much less the only one. Other questions are: What kind of environment dying people live in? How does this environment shape their preferences and experience of the world? And how can we make it better for them?

Hospice is a form of care oriented at least in part toward making dying people feel at home as they are dying. This is a project of enhancing their freedom both to make choices and the feeling of freedom that accompanies them as they go about their lives. But to realize this project you need a certain level of material and interpersonal resources. That’s what we’re lacking.

Providing these resources is much more complex than giving people the ability to end their lives with medical assistance. But it’s also much more urgent and worthwhile, a position that I believe should be held regardless of your feelings on the right to die debate.

My project in the book is to give some suggestions on how we could better tailor our hospice system to support the freedom of dying people.

It’s a book that tries to expand the perspective in which a particular bioethical topic is discussed. That too is the goal of my teaching. Bioethical topics are public topics. This is a blessing. But it can also inhibit learning because students can sometimes come to class with the sense that they already know what they think.

My job in part is to destabilize that: to get them to reflect critically on their own ideas and to have a broader appreciation for what there is to learn, and how complex these issues are. To provoke curiosity, and a desire to search.

This is a book that tries to destabilize the way we think of a well-worn topic: freedom. So in that sense it’s like my teaching. It’s also like it in that it attempts to ground its inquiry in the desire to help others and to better understand the individual reader’s own experience.

I believe in bringing ourselves into the classroom and that, by doing so, we can be better attuned to the possibility of connecting with others and enacting both personal and political change. In the book, I do try to engage the reader personally to connect with them on the level of distinct but shareable experiences. I try to do that also in class.

Catholic education in the U.S. has been committed to an approach that is at once interdisciplinary and applied. This is very much a part of our Jesuit mission here at SLU and it’s not coincidental that we have our very own interdisciplinary Center for Health Care Ethics: my center is a “mission center,” it exists because of the university’s mission, and this mission dictates the way my colleagues and I fashion our teaching and scholarship.

Because of this, I can say confidently that this book could not have been written anywhere else. I would have written a book on hospice somewhere else, but it would have been a very different book: more disciplinary, less engaged, less earnest, less reflective. These are aspects of the that do not fit within the framework of scholarship defined by the 19th century German research university. But our framework here at a Jesuit institution can, and I believe must, be different, and this difference allowed me to write a book that is both more reflective of who I am and, I believe, objectively better. I will always be grateful for this to SLU.

I’m Jewish and that’s also a part of this story. If you read the book backwards, from the story of my mother’s death, to the front, it’s structured as a kind of catalog of a particular kind of American Jewish experience. It’s a tradition of finding refuge in America, and of hospice not just as a form of end-of-life care, but as a model for the American experience. I believe that we need this model today.

Finally, I’m always happy to chat. If any of this is of interest to you please feel free to reach out.