A good death should be a right not a privilege — Do you agree? Listen to this week’s podcast to learn about how our incarcerated population dies behind bars. The Humane Prison Hospice Project provides training to incarcerated individuals, empowering them to support their peers by building on the knowledge many already possess and fostering a sense of purpose for both those offering care and those receiving it. I found that learning about this program and the people that it serves opened a whole different door for me on considering death and dying. I think you’ll find this to be an episode that stays with you, long after the closing music fades.

https://humaneprisonhospiceproject.org/⁠

⁠https://www.facebook.com/humaneprisonhospiceprojectca⁠

⁠https://www.instagram.com/humaneprisonhospiceproject⁠

Transcript:

Diane Hullet: Hi, I am Diane Hullet and you’re listening to the Best Life Best Death podcast. Today I’ve got a really interesting guest from California. Are you California? Am I making that up? I might be making that up, California. You’re 

 absolutely right. 

Diane Hullet: Awesome. This is Laura Musselman and she works with the Humane Prison Hospice Project.

Welcome. Thank you so much for having me. I’m glad we’re finally doing this. I know we’ve been talking about it, kind of going back and forth on email, trying to find a time, you know, modern world, but it has come together and I think this is such an interesting project for so many reasons. And you know, gosh, give us the elevator speech to start us off, kind of what is the Humane Prison Hospice Project?

Mouthful. 

 Sure. Yeah. The 32nd elevator pitch is that we are a very small but mighty nonprofit organization, really working to improve access to just dignity and compassion and. Community care in a system that is designed for punishment. So we do that by training people who are incarcerated as peer caregivers to provide end of life care for members in their community, and not just end of life care, but palliative care, geriatric care, and increasingly memory care.

Diane Hullet: Wow. Wow, wow, wow. I mean, that’s so much. What’s, what’s your role with the organization? How big is the organization and, and also how did you get involved with this? 

 Yeah. Well, I’m the director of development and communications. My role has. Evolved over time because we are a very small organization. There are four of us working full-time.

And then Edgar Barons is our spokesperson. Documentarian extraordinaire and he is out in Chicago working for us part-time, which is great. And then in addition to our, our staff, we also have a pool of probably 35 really amazing volunteer facilitators who come into facilitate the programming alongside us.

So yeah, I’m the director of development and communications. I am also a program facilitator. I’m. Also an end of life doula, which is kind of how I got involved in doing this. I pivoted a career from teaching college and working in academia to working in end of life care with the hospice after both of my parents died in my twenties.

And it was through that hospice that I met an incredible group of peer caregivers at the women’s prison near. My hometown and humane just happened to be hiring a few months later. It was pretty serendipitous. 

Diane Hullet: Wow. Wow. I mean, I think, I think that folks in, you know, just communities outside of prison may or may not have this kind of understanding that people who are incarcerated for life are growing old and dying in prison.

And I mean, they must go through all the same challenges that people in every community within an aging population go through, but they’re incarcerated. And as you said, what is meant to be. A punitive situation. And so how does that, that whole, you know, cluster, I want to call it with another word at the end of that, how does that cluster play out when people are behind bars in communities with dementia, aging needs and death?

 Well, it’s definitely complex to, to use a very surface level word. You know, when we consider older adults who are incarcerated really that age, we kind of pinpoint at 55 years of age or older, although I’m beginning to see some studies reflecting that at 50 years of age or older, because the harsh environment of.

A correctional setting increases physiological age for people experiencing incarceration. But you’re absolutely right that they’re facing many of the same issues with aging and ailing that we do outside of prison, but with much less access to. Adequate healthcare, adequate symptom management, pain management.

One in four people incarcerated in the United States are 55 years old or older. It’s the fastest growing demographic among the incarcerated population in this country. And. Around 4,000 people die in prison each year with the leading causes of death being cancer and heart disease. So two things that really, really require good palliative care and access to that.

But prisons are not really designed. To provide care? Not in the least, no. 

Diane Hullet: So your, your group of volunteers goes into prisons and what are the workshops that they do? I mean, this isn’t about hospice volunteers going and being with prisoners. This is about training prisoners to sit with their colleagues.

 Yeah. And it’s that peer led element of the model that we use is what’s really, really critical. Having that shared lived experience and understanding the, the traumas and the. Dehumanizing elements of being incarcerated are really significant in providing care for people in a way that they know they deserve to be cared for.

So when we go into facilitate programming with volunteer facilitators who are usually local to that facility. We’re, you know, oftentimes just sort of refining some knowledge that’s already there, which I think is something that people outside of prison don’t often really think about. That care can and does happen even in those really harsh environments.

Humans come together and care for each other, and so a lot of the training is. Yeah, really just a refinement of knowledge with some additional skills. But it’s an 80 hour training. It’s a 15 module curriculum that’s incredibly comprehensive put together with. Decades of hospice and end of life care and knowledge from medical professionals and, and also knowledge from incarcerated caregivers themselves.

So it covers everything from really practical hands-on care to things like cultural humility and competency, trauma-informed care, and healing centered engagement, grief and loss, spirituality. 

Diane Hullet: Incredible. 80 hours. So, so it really, I’m assuming that you know, a prisoner interested in being trained in this way probably already has some draw to this, some knowing of how to, as you said, caregiver be around death and dying.

They’ve, they’ve got some innate interest in that because then they’re volunteering to sign up for this 80 hour program. Right. Yeah. And, and once they take that program, how does it play out in different prison settings? 

 Yeah. Well, you know, the first thing we do when we go to a new prison is we do a needs assessment so that we can really gain an understanding of what the specific needs of that population are, because people are so unique and individual and the populations at different.

Prisons. The cultures at different prisons vary so widely. Once somebody goes through the program and they graduate and we have these incredible graduation parties that are just my favorite, they begin working as part of a multidisciplinary team alongside correctional healthcare staff. So really the goal is to.

Encourage a shift in how correctional healthcare staff and custody staff see the residents of that particular prison and really experience these exchanges of humanity. I think one of the core elements of the program is to challenge the notion that. These people experiencing incarceration are not just offenders, but people who can be deeply trusted with care and grief and holding space for others.

And you know, when you witness that kind of humanity being exchanged, it’s really hard to not change the way that you interact with people. 

Diane Hullet: That’s, that’s incredible. Yeah. I can absolutely see how that has an impact on the, on the systems people that are interacting with these so-called volunteers, are they, are they considered volunteers?

Is that what they then become? 

 Some caregivers are volunteers. At some prisons they are working in paid positions, which is great. That’s fairly new. But you know, in the places where we’ve introduced these paid positions, there are also caregivers who have been volunteering for years and years who may have other jobs who may be trying to finish a degree, and so they can’t give up that thing in exchange.

For this paid position, but they still really wanna be a part of the work because it’s so meaningful to them. I think anyone who works in end of life care in any degree right, understands that when you do that something, something changes. Yeah. And, and so that’s, it’s the same, you know, you start working in end of life care, you start working with people who, who need that compassion and.

You don’t really wanna just stop doing it. 

Diane Hullet: Well, it’s like it awakens something in you that allows you to lean in to their humanity and your humanity in just a completely different way. Is does, I mean, does every prison have maybe not this program, but does every prison have sort of a medical wing that has some hospice beds?

Or how does this even work? 

 No. There are about 1800 prisons in the United States. I think the best numbers that we have access to, because there’s not a lot of data on this, to be honest, probably 75 out of those 1800 has some kind of hospice or palliative care program. Maybe half of those use a peer model similar to the one that we.

Really support. In California, we have one prison out of 32 that has a licensed hospice program, and it has 17 beds and we have around a hundred thousand people incarcerated in the state. 

Diane Hullet: Wow, those numbers are staggering, aren’t they? Yeah. And so, and so many people maybe just die in their self. They just, they just simply die.

They’re overcome with their disease process without even having access to medications at the end of life. Yeah. 

 Yeah. And you know, we’ve heard some really amazing stories from people we’ve worked with where, you know, that’s been the case. I think, without these programs, the way that people most often die in prison is, you’re right.

Either, either in their cell. Alone in a medical unit, probably alone or shackled to a hospital bed outside in a community hospital, away from their community friends, chosen family, actual family. And yeah. You know, we’ve heard stories before of, of people who have been caregiving for perhaps their roommate in a really informal way and.

The protocol has been in those cases that when one person dies, their roommate often has to go into solitary confinement until they investigate the death, even if there’s a record of this person having a terminal illness. So, so then you’re talking about somebody who was probably very close to the person who died facing their own grief in isolation and.

If that has its own ripple effect, that is devastating. 

Diane Hullet: That’s, that is, I’m speechless. Right. That’s, that’s really intense. So, so when the volunteers run a workshop, are, is it sort of 10 people in a workshop or 30 people in a workshop or, it just depends on the prison and the, and the training. 

 It depends on the prison and the training.

This year we’re going back to, I think, four prisons here in California that we’ve already trained groups of caregivers in. And so the number’s gonna vary because in some cases we’re replenishing that team. At the women’s prison where I, I visit once a month, you know, it’s really fortunate that probably half of the peer caregivers have.

Been paroled since we did the training. And so the numbers have dwindled quite a bit, but the need is still very large. So we’ll go in and, and train a new cohort to build those numbers back up. You know, we’ve trained, I think the, maybe the smallest cohort we’ve had is somewhere between 12 and 15 people, and the largest is somewhere between 27 and 30.

Diane Hullet: Yeah. Yeah. Listening to you talk, Laura. I mean, the need is so great. How, I’m just sort of staggered by the numbers and the need and how do you make sense of that? Or how do you try to expand? Or is the prison system open to this or is, is this just like too much kindness at the end of life? We’re not gonna do it?

 Well, you know. When, when prisons are open to this, it’s because they also recognize that there’s a need. The correctional healthcare staff, they’re often under-resourced, understaffed, and that leads to a. Reactive delivery of care rather than a proactive delivery of care. And so I think when prison administrations recognize the need, they become more open to it.

Certainly the idea that we’re coming in and really encouraging these exchanges of compassion, I. Is maybe not so popular. But you know, we are actually expanding this year into the first state outside of California, which is Michigan. Lisa, our executive director, and Fernando, our program manager, have actually been in Michigan all this week doing needs assessments there so that we can begin programming.

I really see this work expanding because there’s a need and also because we are beginning to see the impacts. Of programming like this, it’s, I think when we think about it as not trying to change or fix the prison system, because I don’t personally think that that is possible, but rather thinking about it as building something humane and, and hopeful and just changing the understanding of what’s possible.

It’s. Really, I think I like to think of it less about reform and more about reclamation because these things like having this purpose or this calling, having this kind of empathy, they don’t disappear once somebody goes into prison, but they do need space to breathe. People need. A chance and an opportunity to be trusted with that kind of work.

And I think a lot of people would be surprised. How often and how well that happens in these communities. 

Diane Hullet: That’s so beautiful. So a reclamation for the men and women and people involved in these projects to like to find a river through which their compassion can flow. Like you offer a direction. I hear you saying too, right, that the prison, maybe administration isn’t so much about let’s reclaim compassion and find a way for this to be fostered, but they’re hard pressed for staff and so they would like their staff to be better supported.

And if training prisoners to support in these palliative and hospice spaces helps their staff stay happy and involved and be more proactive, then that helps everybody. So, yeah. Yeah. Yeah. 

 And I think just, you know, experiencing firsthand, you know, prison’s a traumatizing environment for everybody. It’s a traumatizing environment for the residents.

It’s also a traumatizing environment for people who work there. And so when these exchanges of compassion begin to be become more frequent and less hidden away, that creates more space to breathe for everybody and really. Gives permission kind of to reclaim dignity and connection and humanity that, you know, wasn’t not there.

It’s not as though it didn’t exist, but there may not have avenues of support for it, so. Coming in to really give that support and encourage it and say, Hey, we’re here for it. We wanna help. It’s, it’s amazing to see, to see what’s possible. And it makes you think, you know, if this can happen in this environment, what else is possible in, in other environments that we often don’t give a lot of consideration to?

Diane Hullet: I, I’m so struck by those words, dignity, compassion, and, oh gosh, what was the third? I just lost it. Humanity, dignity. Oh, connection. I said a lot of words. Dignity, connection, and humanity. What struck me when you said those three is that, that those are the three words that I think of that everyone needs at the end of life, right?

Yeah. What, whether you’re dying slowly or dying quickly, fast. The, and the majority of us will die slow slowly with some time, with some knowledge that we’re dying of something. Dignity and connection are the two big things that we need, and through that we find our humanity. I think this is what I think.

I agree. So to bring that, as you said to, disenfranchised, marginalized, I don’t know what the correct word is, but a diff a population that is struggling and I think it’s really moving that you point out that prison is traumatizing for everyone involved in the system. Mm-hmm. It’s really, it’s difficult.

It’s very difficult. Do you, do you have, are there any stories you can 

 share? Oh, I have. Tons of stories, but you know, I was actually just, I was looking over some, some testimonials just yesterday from some of our participants, and there’s one that always comes back to me time and time again because I think it’s so, it’s such a perfect example of what we really hope to see.

There’s a caregiver who we work with and. She’s older. She is in her seventies perhaps. She’s been in prison for quite a long time and I remember when she first began working her shifts with patients, I went in to visit and she told me that she spent years now waking up every morning late. She had nowhere to be, nothing to do.

It wasn’t like anybody, you know, really cared if she. Came out of her housing unit, but since the work began, she’s been skipping to work and, and she gets there early and she, she waits for her shift partner and is just so excited to start her day because it has meaning now because she knows that she’s a part of something bigger than herself.

She’s a part of a movement. She’s a part of contributing to her. Community in, in a really valuable way. And that has changed the way that she feels about herself, the way that she feels about her place in life. And you know, just to see kind of the light in her eyes spark back up because she has somewhere to be, she has someone to visit, she’s got something to do, and she knows that it’s the best part of her that gets to show up that.

Hasn’t really been, I think, acknowledged or honored in years and years. 

Diane Hullet: That’s incredible. That says so much about what the program does in terms of people who participate and come forward to be in their community, in service and, and I think that’s, it’s, it is, it’s a lesson for all of us. How are we in service?

How do we find meaning? Yeah. Yeah. Wow. 

 Yeah. And it’s, you know, there’s all these other, you know, kind of, I don’t wanna say they’re fringe benefits ’cause they’re, they’re real benefits, but they’re the ones that sort of branch off from all of this, which is that, you know, especially, I mean, I think humans in general, but especially as we age, those social connections become so important.

You know, for our physical health, for our mental health, volunteering. I think studies are showing that volunteering is something that can really improve health outcomes for older adults. So there’s, there’s just so many aspects of this that are beneficial. And while we don’t have the data yet, we do have a lot of qualitative feedback to show that there are improvements being made in health outcomes.

Because this kind of togetherness and community support is being encouraged and it’s changing even the dynamics in some cases between the staff and the residents. We get feedback a lot that you know now this correctional office who used to be kind of grumpy and and frown is, is calling peer caregivers by their first name.

Which is not typical in a prison, and how that makes them feel like they’re actually being seen and respected for the work that they do. 

Diane Hullet: Incredible. And what about the impact on the people who do the training? I’m guessing it’s one of the most enriching pieces of what they do. 

 I, I would say so. I think, you know, I always enjoy talking to somebody who.

Is maybe facilitating for the first time in a prison who’s never set foot in one, who’s never really spent time with anybody who is incarcerated. And I think it’s, it’s a hard thing to describe. You know, sometimes I go on site and I come home and my partner says, you know, how is, how is work today? And I, and I always tell him like, I don’t think there’s a word in the English language to describe.

The anger and, and the rage of how we treat humans who are incarcerated, but also the gratitude and the, and the, the optimism that comes from seeing work like this be done in places where almost everything’s been done to. To contradict it and prevent it from happening? 

Diane Hullet: Well, to dehumanize. Yeah, so, so much prison is about dehumanizing, and this is.

Bringing something in for those who are suffering, I think to attempt to alleviate the suffering. Maybe alleviate is too strong, but to companion the suffering at least. Yeah. The very least. To make space for that humanity to come back in. And I guess that’s why it’s so radical, isn’t it? It’s kind of wrapped.

Mm-hmm. Because the point of prison is dehumanizing and this brings some humanity back. 

 Yeah. You know, I think caregiving is. Kind of a radical act in our society in any sense, but it definitely is in a correctional setting. 

Diane Hullet: Say, say more about that. Because I think so many people are heading to be, if they’re not, if you’re not caregiving already, you probably will be because that’s the, that’s where the demographic is going.

So how, how, yeah. Say more caregiving is a radical act. I love that. 

 Yeah. I, you know, I don’t think. I don’t think that prisons are able to be healing places, but compassion can still thrive in places that are designed to be punitive and controlling and traumatizing and dehumanizing. It’s, it’s indirect conflict with the thing as it was built to be.

And that’s, that’s radical in and of itself, but it’s also. Radical in just what else could be possible. And I think that resilience is so true to human nature, right? I mean, I really do think that. When we’re given a chance, we do care for each other, even in perhaps a society or a culture that is so bent on individualism and you know, this is mine, that’s yours, and we are us, and you’re them.

That, that really, those, those, those bridges can be built. In the face of everything that says, don’t build this here. 

Diane Hullet: Oh, that’s, that’s so good. That’s so good. It, it, I love the idea of that bridges can be built here. And also I’m thinking, you know, even for folks who are listening who are maybe just not familiar with the prison system there, there is this sense that even caregiving.

Of a family member is a radical act in that it asks us to slow down and be present and not mm-hmm. Productive often. Right. It’s very counterculture to be with someone who has dementia, for example, and just simply be with them in their kind of loopiness, and it’s so challenging because it goes against our drive to get things done, our drive to make everything.

Happen, you know, and so there is this beautiful sense of the radicalness of being simply human with each other and that that’s possible even in prison. 

 Yeah. I always think it’s so interesting when you just said the word counterculture. It’s so interesting that it is, it is kind of culture and also it’s so deeply human.

It’s, you know, totally. Exactly right. Yeah. It’s exactly what we do. We provide care for each other in, in small ways, in big ways. And, and I think about, you know, when you sit at somebody’s bedside, if you’re sitting at the bedside of a dying person, it’s so much less about, I. Doing something and being productive and getting something done than it is just really being still and present and slowing down, and it’s so contradictory to everything else that’s been instilled in us.

So. 

Diane Hullet: Yeah. Counterculture. Maybe just to current culture is what I’m saying. Yeah. Yeah. It’s not counter humanity, it’s a hundred percent humanity. Well, Laura, I, I think this is such a interesting program. And how can folks find out more about the Humane Prison Hospice Project? 

 Yeah, we have our website, humane prison hospice project.org.

You can also find us on Instagram at Humane Prison Hospice Project. And you know, if you go to the website and you scroll down to the contact form and write a little message, it’ll come straight to me. So that’s a good way of getting in communication. And yeah, we also hold monthly informational meetings.

Usually it’s the third Wednesday of the month, every third Wednesday morning in which I provide updates and any new opportunities to, to get involved. So. 

Diane Hullet: Fantastic. Well, I hope, I hope this was, you know, just kind of a little different for people to think about how death occurs, how, how we can have our best life and our best death, even in the most difficult of circumstances.

And I think, you know, a whole other population is the homeless folks, the unhoused. And I’ve done one podcast about that. And I would love to do another, because again, you’re talking about a population that. At the end of life, just like all of us need dignity, connection, compassion, and it’s, it’s these are real social issues in our world today.

 Yeah. I think, you know, it’s really about thinking about the idea that a good death shouldn’t necessarily be a privilege. It’s, it’s a Right. You know, and even if it doesn’t always happen perfectly, I think we can do everything. In our power to make it as good as possible. And there’s a lot of overlap between those populations and we, we do have some, some collaborations sort of occurring to, to join forces there.

Diane Hullet: Oh, fantastic. Well, I hope your work goes far and wide and, you know, hits far more than 75 prisons in your work. That was just 75 prisons that even have a hospice kind of facility or some beds designated for hospice within their facility. So, yeah. Yeah. May you go beyond the handful of prisons that you work with and we, 

 we will yeah, we’re expanding into Michigan and.

Continuing conversations in other states. So if we’re not operating in a state near you, I think chances are we will be. 

Diane Hullet: Fantastic. Well, thanks so much for your time. You’ve been listening to the Best Life Best Death podcast. I’m your host, Diane Hallett. Thanks for listening and thanks for joining me, Laura.

Thank you.