There's no good death in jail. This doctor tried anyway.
There's no good death in jail. This doctor tried anyway.
A conversation with Rachael Bedard, on caring for dying people on Rikers Island
Today’s interview is with a hero of mine: Rachael Bedard, MD, who worked for five years as a palliative care and geriatric medicine doctor on Rikers Island, the notoriously horrific jail complex in New York City. Rachael’s job was caring for the oldest and sickest patients in the system—people who had not been convicted of a crime—a job that was likely unique in the entire country. Many of her patients, she told The New York Times last year, were there for “months or years,” some of them languishing in part because they were sick. 16 people died in New York City jails last year, 15 of them on Rikers. Healthcare in carceral settings is generally awful in this country, with incarcerated people routinely being ignored or provided insufficient or unsanitary treatment. Rachael’s patients were lucky to have a doctor committed to getting people out of jail; others in the American carceral system aren’t so lucky, like Farrell Sampier, whose nurses cleaned his bedsores with scratchy, cut-up prison blankets and left his catheter unchanged for months.
Rachael wrote recently for The New Yorker about what led her to leave her job, a combination of the terrible consequences of Covid-19 on the island and the implosion of interest in criminal justice reform in New York City’s leadership:
In late summer, 2021, covid rates on the island rose again, fuelled by a crisis in the crowded intake area, where hundreds of men were being held for days in close quarters without receiving medical care.
I toured intake one morning with one of my team’s social workers, Justin Butler, and was shocked by what we saw: cages of hundreds of men, most of them Black, standing in urine and feces, their arms through the bars, yelling for help. A nurse showed us a shower stall that had been turned into a makeshift segregation cell, where a twenty-five year old named Brandon Rodriguez had died by suicide the week before. Then she pulled us out of the area, just as a fight broke out: the officers were about to use pepper spray to disperse the crowd and regain temporary control of the tight, unventilated space.
My interest in Rachael’s job is partly because this newsletter is all about the most outrageous examples of the right to healthcare being denied in this country. How is a palliative care doctor, even with the best intentions and the energy to do it, supposed to provide a good death in American jails, the site of unmeasurable neglect and cruelty?
But I also have a personal interest in the work of palliative care doctors. Last year, my mum died of cancer, a disease that was mostly well-controlled until it suddenly wasn’t. The month or so that elapsed between her illness getting worse and her death taught me a lot about what matters when people die. The things I really remember from that period—other than her, her smile and her warmth towards us—are the little things. Feeding her the ice cream I made for her when she came home from hospice, or small pieces of cut-up fruit. The soft light in the living room. The heavy quiet of five healthy people sitting with one dying person, and all the unspoken communication in the air. Everything, as I wrote last year, was probably as good as we could have hoped for.
All of this was possible because she died at home with us, and because the National Health Service provided things like a hospital bed, a daily nurse visit, and a night visit from a GP to tweak her meds, for free and without any insurance approvals or co-pay. Her death at home followed a week-long stay in hospice, where she was cared for, fed well, and put on the right cocktail of drugs. It was under the care of her palliative care doctor, Rachel Clarke, that she went from anxious and in pain to being able to die peacefully. I couldn’t resist talking to another palliative care doctor, also named Rachael, whose work took place in completely opposite conditions, where a good death is so out of reach; as Rachael told me, as hard as they worked to treat their patients, getting someone out of jail to die was always the primary goal. They could never “pretend that it was cool to die in jail.”
We were able to control so much of what happened around Mum’s death, to provide the things she needed and wanted, from morphine to little pieces of melon. This control made all the difference. Her dying was the worst thing that’s ever happened in my life, but there’s no bottom to how much worse it could have been if those things had not been in place, let alone if she had been incarcerated in a vicious and brutal jail system. Rachael even had a story about a patient who wanted fresh fruit, just like Mum. But that man didn’t get his plum.
This interview has been edited and condensed.
Sick Note: What drew you to geriatric and palliative care in the first place?
Rachael Bedard: I loved diagnosis, but I was always pretty clearly a generalist. I didn't want to subspecialize in an organ system, I didn't want to be a cardiologist or a gastroenterologist. I really loved, or felt very charged by and engaged in, people's existential distress around illness. That meant I liked taking care of people who were sicker, because I liked when I got to directly talk to people not just about what was happening in their bodies, but how they actually felt. Even when I was an intern, I really liked leading family meetings. I liked sitting with not just the patient themselves, but also with the people who love them and talking through what was going on and helping those folks make hard decisions.
I was comfortable with the idea that I wasn't going to cure a lot of people. It feels really important to me to make people's experiences better, of illness, of their own lives, even when we can't cut the disease out. Palliative care and geriatrics are fields that are fundamentally dignity-centering and are very much about recognizing the personhood of the patient you're taking care of, which lots of medicine doesn't do so well.
The other thing that was important to me was that I did my residency at the Cambridge Health Alliance, which is the public hospital safety net system affiliated with Harvard. It’s a safety-net system that serves a very underserved population of predominantly Medicaid-dependent folks, new immigrants, a ton of people who have comorbid serious mental illness, people who have comorbid substance use issues. It's a very under-resourced hospital system all the time, just struggling to keep itself above water, despite being affiliated with Harvard. It was an amazing place to train for lots of reasons, training in this mission-driven paradise.
But then so much of what geriatrics and palliative care, what those fields were about, didn't apply in this under-resourced environment. So things like, you want to honor people's wishes, and you want to make sure that they get to their daughter's wedding, or you want to make sure that they get to die comfortably at home—all of the kinds of things that you were supposed to assess, but fundamentally assumed a set of structures and supports in people's lives that were not actually there for any of the patients I took care of. That disconnect was galling to me, because I was really committed to the principles of what palliative care and geriatric care aspire to do, and then also frustrated by the ways in which I thought the techniques and priorities within the field really only worked for a certain kind of middle class patient.
Sick Note: It struck me while you were talking about what drew you to palliative care—the dignity and personhood—that must become exponentially more difficult when you're dealing with patients in the jail system. Can you talk a little bit about the particular challenges of trying to create a good environment to die, or honoring the way that someone might want to go out, if they are in jail?
Rachael Bedard: The first thing that I will say about that is you're absolutely right. What does it mean to do that well in jail? What it really means is to advocate as strenuously as possible to get somebody out of jail.
For clarification: Jail, not prison. The vast majority of people I was taking care of were in pretrial detention. They were still in the innocent until proven guilty phase. In other words, they hadn't been convicted of anything, so they absolutely could have been in the community. That's the first thing and a really critical point.
In prisons, in California, for example, there is this huge population of people who are serving life without parole. Now, I think the best thing you could do for those people is to advocate for clemency. But to the degree that there are going to be people who are very likely to die incarcerated in the short term while clemency advocacy is going on, it makes sense to some degree that the California prison system has built hospice capacity within its walls.
I felt very strongly in my role that I was walking this funny line, where on the one hand I was trying to improve the quality of care that our patients were receiving while they were detained with us, and that I was trying to bring some palliative care and geriatrics approaches to that care, without building capacity in the jail system that would suggest to decision makers that it was fine for people to be dying while they were in pretrial attention.
That is a really important tension in correctional health, if you are practicing from an abolitionist perspective, where on the one hand you want to be meeting patients who are incarcerated where they are in those systems and making sure that they are being cared for in a way that meets standard of care. But you do not want to make the focus of all of your efforts replicating a nursing home within the walls of a jail, and that is exactly what's happening all over the country. Jail and prison systems are building capacity to take care of these older patients who are coming in, and it's incredibly expensive, it's obviously still totally inadequate. Right from the beginning, navigating that tension was an interesting part of this job and it's why it was so important that our work included this advocacy piece. It meant that we were always working with people in two tracks. If they told us that they wanted to be free, we prioritized advocating for their freedom as much as possible.
And then we also worked on a plan B. The plan B was, if you are going to be here, what are we doing? People overwhelmingly always told us that their priority was to be free. In the US, where they're going out to a safety net that is unbelievably inadequate. So people would say, "I want to be free," knowing that their freedom meant they were likely going out to the shelter system. They're likely going out to spotty, inadequate insurance and access to care, and so on.
The fundamental constraint of unfreedom distorts the hierarchy of needs in this way, so that the courts all the time would be like, "Well, isn't he better off in jail because he's got a bed, three meals a day, and he's getting chemo?" That was obviously an incredibly dignity-erasing concept of what it means for people to be incarcerated. The conditions of unfreedom were not only challenging in really practical ways to being able to deliver care, but also they were sort of beside the point.
Similarly, we never tried to pretend that it was cool to die in jail. There are prison hospices all over the US that are pockets of tenderness within prison systems. There have been documentaries made about them and stories written about how profound it is to train people who are detained to take care of one another. Okay, fine. But we were just never going to pretend that we thought it was cool for people to be sick while they were incarcerated or deny that we understood that people wanted to be out. It really meant not gaslighting people. It meant not over-promising. I couldn't make the environment nicer than it was.
There were things that I wished my patients could have, but that we simply could not get for them. For example, as you know, when people are ill, their appetites are diminished. They get nauseous a lot. They have very specific tastes. It's really hard for them to keep up with their nutritional needs. Here in jail, you have no control at all over what you're being fed. I had no control at all over what they were being fed, because that's not run by the health service. That's run by the jail system. If I said, "This man is craving fresh fruit," which came up for a patient who was really sick—he was like, "I just want a plum”—I couldn't write an order for that and feel confident that it was going to happen.
Sick Note: Food in jails and prisons is famously awful. Were your patients being fed the exact same stuff as the rest of the prisoners?
Rachael Bedard: Yes, they were being fed the same food. If you're a kosher, there's sort of an accommodation, there's accommodation if you're a vegetarian. But that accommodation is genuinely like, you'll get two pieces of bread instead of meat, or something.
That's just very typical of jail, which is there are the set ways that things are done, or these are the resources we have, or this is what we understand how to do. Beyond that, when you ask for divergence from those things, it's really hard if what you want is not something that's already on the menu.
That goes for food, but it also goes for anything else. So for example, I had a guy who did not want to go to the hospital for procedures that he needed, because he was really anxious. What he said would make it possible for him to get on the bus was to be allowed to take his radio with him so that he could listen to music while he was there. And the Department of Corrections just could not wrap their head around that accommodation. We were constantly in that kind of low-level negotiation, where I was saying, "Well, he gets chemo or he doesn't get chemo. So why don't we let him take his radio?" And they're like, "Well, he's making a choice not to get chemo." People's experience of illness is so draining and anxiety provoking and harrowing that taking the radio is really the difference potentially between being able to tolerate it or not.
Or this person is so scared of going into the MRI machine and they freak out every time and they don't do it. If that was a non-incarcerated patient of mine, I would say, "Okay, let's give them a dose of Ativan before they go in. Let's give them something to help them relax.” That’s really hard to do in this setting. It's hard to mobilize the kinds of medications that palliative care really relies on, just because it's so counter to the dominant culture, which is so withholding.
Sick Note: I was going to ask specifically about medications. This is maybe the wrong way to do it, but I am kind of framing this in my head in terms of, what was everything that was right about the way that my mum died? Presumably, all of those things were missing. One of them that was extremely helpful was meds. It was actually the fact that the cocktail of drugs that she was on when she left hospital wasn't working that eventually led them to offer her a bed in the hospice, and it was there that they got on the right cocktail of opioids, basically, that made it all much more bearable.
There's two questions here. One is, how hard is it to get the drugs that make dying more bearable? The second question is when it comes to treatments, anything that is more expensive—I'm thinking about newer specialty drugs. Was it ever difficult to get things that were more expensive or new drugs?
Rachael Bedard: There's this really fascinating thing in the US, where people who are incarcerated, by virtue of the 8th Amendment and then some Supreme Court cases, are entitled theoretically to “community standard of care,” when the deprivation of that standard of care would constitute indifference or cruel and unusual punishment. That standard is a little bit fuzzy, because what does that totally mean? But it also means that people who are incarcerated are the only Americans who are entitled to any care.
Sick Note: That's exactly what I was going to say—there is no “standard of care” in the US.
Rachael Bedard: If you're uninsured in the community, you're entitled to nothing. You show up in the ER and have them stabilize you, and send you back out. So there is this complicated dance within correctional systems around the country where there's a huge amount of discretion actually about what care is provided.
But there is also this sense that what you're providing does have to meet some idea of what standard of care in a given area is. In New York City, because of our agency and because of its orientation and because it did not have a profit motive and because it was part of the public hospital system, et cetera, et cetera, we would just pay for what people needed. That ranged from hearing aids and glasses and dentures to expensive new medications, like the new Hep C medications when they first came out, to expensive treatment for rare diseases that cost like $50,000 a month. If it was indicated and the relevant physicians in charge prescribed it, we would do it. That was incredibly important and part of why it was possible to work in this system.
Where that ends, however, is around things like clinical trial access, where even people who are getting standard of care, oncology care do not necessarily get access to a clinical trial at MD Anderson, Texas, or whatever. Even within that very high level of standard of care, there were limitations that would come into play for the people who were most seriously sick or people who had the most complicated illness.
On the symptom management side, if people were prescribed opioids for pain and they had a serious illness, say like bone metastasis or something, they would get prescribed. But to be able to do that, as you know from your mom, you don't just need to have those things prescribed on a schedule. They need to be available on demand. As people decline, their symptoms are often getting worse and it's a very dynamic situation, and new things are happening. So the intensity of individualized personal care that someone requires when they have a really serious illness and are in their last weeks or months can be very high.
That was something we couldn't do. We didn't have the capacity to have one-on-one aides for people in the jail. If someone was really suffering like that, they were often hospitalized and then they were hospitalized through the end of their lives, theoretically. The acute hospital setting is not the perfect setting for that. Even with good nursing, et cetera, et cetera, it's just the ratio of who's available to give care, when, how on demand it can be… All of that is hard.
So it wasn't necessarily because of cultural resistance to using the medicines that people thought were appropriate. It was more just that there was a reason that hospices are staffed the way they are and why people dying in a hospice is different from dying in a hospital, and we did not have that kind of setting to send someone to.
Sick Note: I think the big thing that probably most people want is to have their families with them. For people who you couldn't get released, was there any mechanism to allow people's families to be with them at the end if they're in jail?
Rachael Bedard: There were lots of different learning curves, and one of them was how early on I learned to just ask. All of these things that are rules are not laws. They are rules. When you work in a system that is run by this paramilitary organization, you get this sense that if they say the doors can only open between 6:00 and 7:00 or whatever, that's somehow the law. It's not the law. It's just someone made that choice. So if you need it to open at 7:30, you should just ask.
With that in mind, with my first few dying patients when I was really early on, I was distressed by the ways that I thought that they were being denied perfectly appropriate, important comforts at the end of their lives. I had a guy who wanted Skittles, and the officer said Skittles aren't on the commissary list, so he couldn’t have them. What are you talking about? What do you mean? That's outrageous. Don't be ridiculous.
On the other hand, it's a very hierarchical organization, so what I learned to do early on was to just go up the chain until you find somebody who said yes. When people started to say yes, I would say, “well, we've developed the practice of saying that there should be unlimited visiting restrictions for people who we think are in the last weeks of their lives. I'm asking you to implement that for this patient.”
We had a lot of success with that. We got bolder about what we asked for, because it was incredibly restrictive. Without that kind of intervention, families are only allowed to visit during certain hours on certain days. Especially for families where if you happen to be working during the allotted visiting hours for you to come and see your dying son, it just meant that people were separated at the end of life, or people couldn't call long distance, their family member would live upstate in a different area code. They weren't in touch.
The more patients I took care of… Each patient gave me new insight into different ways in which we were fucking up their dying process. And then I would learn from that to anticipate potential issues with the next one and to try to head them off by asking for accommodation early on. So unlimited visiting hours. Can the social worker go and help the person make the call to the upstate person? He really wants Skittles. I'm going to clear it with the deputy warden and bring the Skittles in. That kind of thing.
And I also just got braver as I went on because I had more experience. I stopped being nervous. That was a learning curve that took a lot of experience. It honestly took the incredible support that I received from my leadership. And the vast majority of correctional health physicians just don't have that.
I was just so, so lucky in the way that I was supported to do stuff that was totally outrageous. One time I arranged to have a family meeting with an older guy and his son not during visiting hours, where I was going to be present. I did a true family meeting on the island, which had never been done before and I don't think has been done since. It was an incredibly huge lift. It involved getting permission from the president, basically. But it was really important.
Another time, last year, we partnered with NPR StoryCorp to bring recording equipment to the jails and invite patients to interview each other or to be interviewed by our staff about their lives as legacy work. We did that because we had been taking care of all of these older patients for whom part of their enormous moral distress was like, "I'm going to die incarcerated and no one's going to remember me. And I'm going to die amongst strangers." So we realized it was incredibly important to offer people opportunities to do some legacy work, but obviously getting permission to bring a case of recording equipment into the jail was really hard.
I guess what I'm saying is we did it all the time and we did our best to get people what they wanted and what they said they wanted, but it always involved breaking the rules or asking someone to let us break the rules.
Sick Note: Do you have any kind of advice for other doctors doing palliative care in jails, if there is any way to avoid the kind of burnout that you ended up experiencing?
Rachael Bedard: I loved this job so much. The burnout really came with this extraordinary implosion of the New York City jail system and the way that Rikers Island just became an absolutely chaotic mess, which it has obviously always been, but it totally, totally fell apart in 2020 and 2021. That was largely precipitated by COVID and other things going on with the department. Had that not happened... And also, frankly, it was exacerbated by a shifting criminal justice reform atmosphere.
I had been really spoiled, because my first four years there had been during this time of very low crime in New York City, when there was a huge amount of momentum to close the jails on the island and to get the census down and bail reform was happening. So it felt like, okay, I'm working inside, but as part of this movement. And then when lots of things changed, after the first wave of COVID, including rising gun violence in the city and the backlash to criminal justice reform, the context changed really dramatically. So my burnout was really context dependent. I had hoped that I would hang out till Close Rikers happened.
Being able to do this work in a way that feels sustainable really depends on the context of where you work, what agency you work for, what the correction system you work for, how interested in change it is. I could not have done this job in most jail systems around the country. I just wouldn't have been allowed to do what I did. And if I hadn't been, I don't know that I would've lasted five years. As much as I would encourage anyone who's interested in correctional health to give it a shot, to be a lone change agent in a huge oppressive structure that's not interested in changing is probably not a recipe for feeling really great about going to work.
Because then you are relegated to bearing witness a lot. That wasn't what I wanted to be doing. That said, for people who are doing it or are interested in it, I think my main advice would be: One, try to find like-minded folks that you're going to do it with, and two, to recognize that the rules can be changed. A lot of policy is not law and policy can be changed internally. When we were the most successful at changing policy, we framed our demands as challenges to whether the system was providing standard of care or whether there were policies that were interfering with clinical care.
So for example, there had been an unofficial policy that providers were not supposed to call people's family members in the community. And we said, well, that's clearly crazy. Because lots of these folks are not able to make decisions for themselves, certainly cannot make decisions without consultation with their families. But also you need collateral history from families. That boundary is interfering with our ability to be able to provide what people need. I think to just feel empowered, to challenge the standards, but it seemed so clearly harmful.
Another obvious one is just, you don't have to be in correctional health, but if you take care of incarcerated patients in a hospital setting and your patients are being shackled to their beds, which happens all the time, all over the country, to really think critically about like, well, is that shackle in some way interfering with my patient's wellbeing? Is it putting them at risk of a fall if they try to get out of bed? If that's the case, go to the officer and be like, “That shackle is putting my patient at a falls risk and I think it should come off.” If the officer's like, “We can't do that,” then find out who else you can talk to and say, “Well, what can be done?” If an officer is sitting outside the door, why do they also need to be shackled?
It’s like talking to cops. It's very scary to do. It's not because I'm particularly courageous or anything that I did it. It's because I had the support to do it organizationally, and also because once I had done it a couple of times, I got better at it, and knew that it was possible. But the average emergency room doctor, who's taking care of a delirious shackled patient, who is like slinging themselves out of bed and the shackle is going to cause them to have a head injury, that doc doesn't know that they're allowed to say no.