Podcast Episode Transcript: Dying With Dignity: Compassionate End-of-Life Care in America's Prisons
GAIL MARQUARDT:
Welcome to the Remembering a Life podcast. I'm your host, Gail Marquardt. Every month we gather to talk about life, death, and how we want to be remembered. Today I'm talking with Laura Musselman and Fernando Murillo. Laura and Fernando join us from the Humane Prison Hospice Project in California. Laura is director of communications, and Fernando is the program manager for this amazing organization that helps people who are incarcerated and on hospice die a dignified death with the help of their fellow residents. Welcome Laura and Fernando, I'm so happy you could join me today.
LAURA MUSSELMAN:
Thank you so much, Gail. Happy to be here.
GAIL MARQUARDT:
So let's talk about the Humane Prison Hospice Project. What is it, Laura, and how did it start?
LAURA MUSSELMAN:
Sure. The Humane Prison Hospice Project trains incarcerated people as peer caregivers to provide compassionate end of life care to their fellow community members. Our work is rooted in recognizing the inherent dignity and humanity of every person, and the belief that no one should die alone, especially not in prison. The project started because of a critical need. The United States Prison System is not designed for aging or terminally ill people, yet we have a rapidly growing population of elderly, incarcerated individuals, many of whom face painful, isolated deaths in environments that prioritize punishment over care. So our work builds on the legacy of other caregiving programs, particularly the one at the California Medical Facility here in Vacaville, California, which has one of the few prison hospice programs in the United States. And we've now expanded into five California prisons, including both of California's women's prisons. We've trained about 118 peer caregivers to provide compassionate human-centered care, and we'll be expanding into Michigan this year.
GAIL MARQUARDT:
Wow, that's great. I recognize that there's a need across the country and country. Isn't it true that people who are incarcerated tend to age more quickly than those who aren't?
FERNANDO MURILLO:
I'll answer that question. Yes. So typically in the community, people are identified as being elderly or that are aging at the age of 65, and the carceral setting at the age of 55. People incarcerated are typically exposed to poor diet, limited sunlight, poor socialization conditions that are substandard and are geared and designed to punish. So yes, people tend to age a little bit more rapidly in the carceral system.
GAIL MARQUARDT:
So I'd love to know how each of you became involved in this work. Laura, let's start with you and then Fernando.
LAURA MUSSELMAN:
Sure. The short version is that I come from an academic background. I taught philosophy at the college level for about 10 years, and in my twenties, both of my parents died two years apart. So I did a pivot. Career wise, I trained as an end of life doula with INELDA. I began working for a nonprofit hospice and training hospice volunteers. And through that nonprofit hospice, I began going out to the Central California Women's Facility in Chowchilla, California to provide grief support and ongoing training to an incredible group of peer caregivers there known as Comfort Care. And it just so happened that Humane Prison Hospice Project was hiring around that same time and all of the roads merged to one.
GAIL MARQUARDT:
Oh, that's awesome. And Fernando,
FERNANDO MURILLO:
I initially got involved with this work while I was incarcerated. I am just as involved. I was incarcerated for approximately 24 years, and in the last five years of my incarceration, I worked in the only licensed hospice in the California prison system. As a pastoral caregiver, I get involved in this work. I seen the need to provide a compassionate end of life care to a lot of my peers that were aging very rapidly. My community was in need of somebody and many people that were going to be present for end of life care, compassionate care, memory care, palliative care, et cetera. I actually reluctantly agreed to get involved with this work after being recruited pretty aggressively because I just knew the level of investment was going to be intense, and I kind of questioned whether I was able to offer myself full-time to take care of some of the most vulnerable people in our community.
Upon release, I was released by the governor of California of 2020. I was recruited by the University of California San Francisco, AMEND to be a part of culture change initiatives in the prison systems where our primary partner was the Norwegian Correctional System. And while working with UCSF Amend, I was notified by a small nonprofit organization called Humane Prison Hospice Project that they were in need of somebody that had lived experience working in the setting to help with creating a curriculum to train peer caregivers in California and beyond. So that's not my short version. So yes, that's how I got involved with this work.
GAIL MARQUARDT:
So you mentioned that you were pretty hesitant to do this kind of work. How is it working out for you? What have you found to be the rewards of doing this?
FERNANDO MURILLO:
The reward has been one, developing a sense of community where folks that are eligible and able bodied to provide a resource to folks that are extremely vulnerable and that are not able bodied to be able to have dignify compassion to end of life experience, but also a palliative experience and help folks to develop resources and to be trained to better care for folks that have memory care issues, et cetera. So just seeing the overall community development, community building where folks are providing this resource to the most vulnerable is so rewarding. And not only that, but I got to witness firsthand the impact multidisciplinary team has as well as having incarcerated peer caregivers, providing this resource impacts correctional staff members because not only are the peer caregivers a part of the multidisciplinary team, but it helps enhance the overall quality professional experience of the correctional staff members.
GAIL MARQUARDT:
I'd love to learn more about how this type of program benefits different audiences. So we know that it benefits the people who are dying. So I'd like to learn more about that, but I'd also like to learn more about how it benefits the person who is dying, how it benefits their peers, and then as you mentioned, the staff as well. So how does it benefit the person who is terminally ill?
FERNANDO MURILLO:
Yeah, so most of the incarcerated people that come into the hospice or come to the setting where peer caregivers are offering this resource typically experienced at baseline in the carceral setting where they're ignored, their needs have been put on the back burner, they've been convinced that they're really not sick, that they just want some sort of attention and their condition is not really honored. And what they've requested has been typically ignored. Once a patient comes into the setting their entire baseline of being dismissed and ignored changes, they become the focal point. They become the center of attention in which the multidisciplinary team is focused on them, compassionate. And the life care, a part of the multidisciplinary team is including the family members of the patient and to the care of the patient. I'm sorry, I'm using a lot of redundant language. And you're saying patient multiple times, but yes, they go from being utterly ignored, dismissed to be treated with great compassion, and not only are the peer caregivers present to provide them care and to speak to them and being the bridge of communication between their needs and communicating that to staff. But the correctional officers are also involved in the care. They're responding to call lights, having conversations with the patients, they're humanizing the patient and this experience, and it's something that a lot of patients, the peer caregivers very privately like, is this real? Because they're so accustomed to that baseline of being ignored and dismissed that they're asking questions like, is this real? Is this humanitarian treatment authentic? So yes, I hope that was helpful in providing a response.
GAIL MARQUARDT:
So then the individuals, that person's peers who are taking care of them, I would imagine it also humanizes them. I read some quotes on the Humane Prison Hospice project website about how people realized there was something in them that had either been hidden for so long or that they didn't even realize they had. What impact does it have on that person's peers?
FERNANDO MURILLO:
Oh, it's life changing. It's disruptive and not in a negative way. It's very positive. And prison environments, it's typically very predatory. Most people don't have the opportunity to even process what happened to them in their youth, their arrests, how people were victimized in the commission of their crimes, or even the experience that they had, meaning the incarcerated person had around victimization and their own personal experience. When they come in contact with a hospice or palliative care and they receive this training, they're able to delve deep within themselves and get to learn that they have this deep sense of empathy and compassion, and that extended their humanity to other people is a good feeling.
GAIL MARQUARDT:
It sounds truly transformative.
FERNANDO MURILLO:
It is. It's very transformative because people have been told their entire incarceration journey that they're less than, they're not as good as people in the community. They're given what I refer to as the customs of inferiority. They're stripped of their identity, their autonomy is managed, their names are replaced with numbers, and their clothing is, and their individuality is replaced with a jumpsuit. So when this opportunity presents itself, I've had the opportunity to see the best versions of themselves presented to make sure that somebody's as comfortable as possible, and also seeing the development of social skills, professional skills, and the socialization that is enhanced by being a part of the multidisciplinary team, being proficient in providing a skillset that is rooted in the medical needs of the patient.
GAIL MARQUARDT:
I'm putting myself in the shoes of a person who has a family member or other loved one who is incarcerated and who is dying on hospice and how helpless I would feel. Are there opportunities for family members to find out about how their loved one is doing the care that they're receiving, things like that.
FERNANDO MURILLO:
I want to provide some clarity around this. And the California prison system, not all resources are universally applied. I think Laura shared this in the beginning, but there is only one licensed hospice in the California prison system. And to put that in the context, there is approximately 33 prisons, male prisons in the state, and only one of them has a hospice. There's approximately two women's prisons in the state, and they don't have a hospice, but they currently do have a skilled nursing facility at the California Correctional Women's Facility. So at the California Medical facility, Vacaville family members are included and all information sharing respect to what happens to each individual patient. So when a patient goes on vigil or they're even admitted into the hospice, they're immediately contacted and the level of information that is shared is super transparent. They're included in every aspect of the patient's care. They're communicated with the director of pastoral care services, but they're also communicated with by the nursing staff. Like I mentioned, the communication is transparent. So that's a great cultural component that has been embedded into the norms of California Medical Facility Hospice Now and other facilities, which I have a lot of experience with as well. This level of communication is not always present. There's not a lot of transparency and a lot of prisons outside of the California Medical Facility Hospice where staff members are communicating directly with family members.
So when families do have the opportunity to be contacted by the California Medical Facility Hospice, they're typically inspired because they're used to the latter where most staff members in California correction facilities are not communicated at all.
GAIL MARQUARDT:
Yeah. Can you tell me a little bit more about that and the staff and the transformation that you see here in this kind of situation? How, if at all, does that affect the kind of care people get going forward?
FERNANDO MURILLO:
Yes. So in California Medical Facility, this program has been in place since 1993. And so it is deeply embedded into the culture of the institution, and it has influenced it in a positive way from every corner of the institution. And this is how not only is the caregiver providing care to the patient, but as I mentioned earlier, the correctional staff members, whether it be custodial or healthcare, they're involved with the patient's plan end of life plan. So I'll speak about correctional officers specifically. They have the opportunity to develop an intimate bond with patients when they're in the hospice, typically, before they even get into the hospice, they have this very rigid perspective on what incarcerated people are, how they define them as being the enemy, et cetera. But when they have the opportunity to see the peer caregivers providing this intimate end of life care, they want to learn a little bit more about how they'd arrive at this moment in time.
And when they see the interaction between the peer caregiver and the patient and influence how the correctional officers start speaking to the patients and the peer caregivers, they start humanizing them in a different way. There's a sense of normalization that develops in this environment and where the correctional officers want to be a part of the care. So they begin to speak to the patients with a lot more humanity, a lot more care and kindness because they see their own vulnerabilities and they see their own mortality every time they see a patient pass away and they understand this is the human condition and they begin to speak to family members, they begin to develop relationships them as they begin to visit the hospice, and it impacts their correctional journey. And what I mean by that is like, I don't know, I'm throwing statistics really quickly. Correctional officers have a mortality age of 58, and there's a lot of research and studies about why they have such a high mortality at a young age. But this environment, one where there's a multidisciplinary team, where there's incarcerated people being a part of the peer caregiving and the patient is also incarcerated, did their health outcome seems to improve. They seem to have a lot more job satisfaction knowing that they're making a difference in their profession. So that impact in itself is worth talking about, acknowledging that people that are working in this environment that have deplorable mortality aids have improvements knowing that they're making a difference with their profession.
GAIL MARQUARDT:
Wow, I had no idea this type of program was this powerful. You think about obviously the person who's dying and how it affects them, but that it has that kind of systemic effect on so many people. Laura, are there other outcomes that you've seen that Fernando hasn't mentioned?
LAURA MUSSELMAN:
I'm sure that there are. I think the most profound impact of the program that we've seen is it's both tangible, but it's also deeply personal. We get to see caregivers form really deep trusting relationships with the people they care for, creating a sense of community and family in a place that feels often isolating. And we've been able to see those culture shifts within the prisons as well. Correctional staff at the sites where we train have noted an increased respect toward the peer caregivers. And the peer caregivers have noted that increase in respect as well, having staff recognize them as essential contributors to patient care. For our caregivers, for the most part, they all report feeling a renewed sense of humanity and purpose. It's an undeniable impact, and that's why we're so committed to expansion. I think really it speaks to the interconnectivity, the power of community that the health of one person really does affect the health of everyone around them. And when we take care of each other and we can show that compassion and humanity, people all around tend to do a little bit better.
GAIL MARQUARDT:
What is the process for determining who can be a caregiver?
LAURA MUSSELMAN:
I'll start by saying that it varies from site to site. Every prison is a very unique place. Every prison has its own culture, different relationships between staff and residents. And so it really comes down to the needs of that particular site. And so it varies at some places. Peer caregivers need to have a certain amount of time left in their sentence because the medical staff doesn't really want to train somebody who's going to gain all these skills and all this knowledge and form these relationships. And then really being able to go right home. Of course, that's what we hope for everybody. But a lot of prisons want to train people who are going to be there for some amount of time in that they can really invest in the patient care, but also be a leader in the group to help recruit future peer caregivers. But that's just one example.
GAIL MARQUARDT:
Do you have anything to add to that, Fernando?
FERNANDO MURILLO:
Yeah. The structure of a facility like California Medical Facility is well defined because the program has been in place for decades. So there is clear definitions on what the institution looks for that will restrict people from being a part of the programming, but there's also qualities that the program looks for within individuals in the institution to be a part of the program. So the roles of everybody involved in respect to peer caregiving at California medical facilities well defined on what exclude somebody and what makes somebody a good candidate.
GAIL MARQUARDT:
I'm curious about after the death, do residents have the opportunity to hold a remembrance service, a memorial service for someone who has died? What does the aftercare look like?
FERNANDO MURILLO:
So what I'm going to share is not universally applied. What may happen that, and I'm pretty sure Laura's going to provide some substantive responses around this as well, but what is offered is not universally applied in California prison systems. I'll give you an example of what that means. In California medical facility, when somebody passes away their memory is honored in a memorial service in the chapel, and it's done quarterly where there's flyers sent to the entire institution, there's staff members that are invited to the memorial, there's a ceremony done if there's a veteran that passed away with a folding of the flag, et cetera, and people are invited to come and share a little bit about the patient that passed away or patients plural. But as I mentioned, what is available and currently present and is part of the cultural norms at California Medical Facility may be something completely foreign in a prison just right across the street at the California State Prison, Solano and Laura has had an extensive amount of experience working at California Correctional Women's Facility, and I'm pretty sure that she can share a little bit of her experience of working with the women there.
LAURA MUSSELMAN:
Yeah, I'll say that the communities in prison are really tight knit and interconnected in ways that I think a lot of people outside don't always understand. So when someone dies in a prison, it doesn't just affect their close friends, it impacts the entire community. Most incarcerated people have already experienced really profound loss, the loss of family relationships, of maybe the death of loved ones outside the grief that comes with long-term incarceration itself. So when a peer dies, especially without dignity or support, it really reinforces this harsh reality that prisons were never designed for aging or dying or compassionate care. So when peer caregivers are present, something is able to shift. And instead of dying alone, a patient has companionship and dignity and care in their final moments for their peers, knowing that someone was there, that their life and their death mattered helps ease that burden of grief.
And it also fosters a culture of healing where people aren't just left to suffer loss in silence, but creating a memorial service, getting permission from the administration to hold something like that can be complicated. And we're not always successful. I'll speak just specifically to the women's prison. We do our best to hold memorial services as often as we can. But the really impactful ones where we're able to invite not only members of the prison community, but also that patient's family or friends outside, those are rare instances. And it's a goal that we have to really improve that and just really add to that feeling that this person mattered and we're not going to forget them.
GAIL MARQUARDT:
Right? Because even in prison, after the person is gone, the impact that they had on their peers and all those memories for really the people who have become that person's family don't go away.
LAURA MUSSELMAN:
And I think one of the goals of our program is to also just help create a culture where death is acknowledged and it's okay for people to mourn. And that caregiving in and of itself can be a way of healing and finding meaning and purpose. The memorial services that we are able to have been just exceptionally beautiful, among the most beautiful I've seen where people can really sit together and sing and share stories and just remember a person for who they were, not a person who was incarcerated for X amount of time.
GAIL MARQUARDT:
Oh, that's wonderful. Thank you both for advocating on behalf of being able to hold that kind of service. Laura, what other goals of this project do you have moving forward?
LAURA MUSSELMAN:
So our goal is to bring this program to more prisons across the country. I mentioned in the beginning that we've trained over a hundred caregivers in five California prisons so far. The demand is growing, and we'll be expanding into Michigan this year, which is really exciting. That's the first state outside of California we'll be expanding into. We also want to develop some stronger evaluation methods to track the long-term impact of the program, not just on caregiving outcomes, but on broader prison culture and community health. And at a larger level, we want to change the conversation around incarceration, aging and dignity. If we can demonstrate that compassion and care belong in prisons, we can start to shift public perceptions of what justice, healing, what those things truly mean and the gigantic impact that they can have. It's unfortunate that there's not a lot of quantitative data around this, and while we have really profound qualitative data, it's difficult to quantify the purpose that this can give someone and the meaning that it has to the community at large. So that's definitely one of our goals in the near future.
GAIL MARQUARDT:
Well, and that's definitely one of the reasons I wanted to have both of you as guests to help spread that information, because you're right, I don't even think people think about the fact that people are dying on hospice in prisons. I don't think that occurs to a lot of people. So this is really important work. So I have two final questions for each of you. Questions that I ask our guests. Who are you remembering today? Fernando, would you like to go first?
FERNANDO MURILLO:
That's such a loaded question, especially since I've taken care of hundreds of people in the hospice. But if there was one person I'd like to remember today, his name's Michael. He's one of the youngest patients that I've ever taken care of. He had stage four bone cancer. He was a veteran. He was 30 years old. I'm remembering him today because of many reasons. But the primary one is how sweet he was. He was always so appreciative of every moment that he had to live, even though his crime was super minimal, I'll be very blunt, he had a DUI, and he was essentially sentenced to death because of this condition. And the court's unwillingness to be mindful of his stage four cancer that they sent him to the California medical facility to essentially pass away. I'm thinking about him not only for his gentleness and his kindness, but his unwavering commitment to share with people how appreciative he was of the level of treatment he received. Now, he was granted a compassionate release and was able to spend one day in the community with his 10-year-old son before he passed. But I'll never forget that level of gentleness, that kindness, that level of appreciative presence that he had with all of us. It was truly transformative. It helped me to self reflect on what I currently was in possession of at the time, and helped me to be a lot more focused on those gifts.
And that's why I'm thinking about him, because I need to do that right now with all the challenges that I'm currently experiencing in this society and my personal life. And I reflect on Michael quite a bit and try to summon the level of strength that he had, empathy and kindness that I want to exude in my own life. So I'm thinking about him today.
GAIL MARQUARDT:
That's an incredibly powerful story, Fernando, and thank you for sharing a little bit about Michael's life with us. I can understand just from your short description of him, why you think of him often. Thank you for sharing that, and thank you for the loving care that you provided to him.
FERNANDO MURILLO:
Thank you.
GAIL MARQUARDT:
And Laura, who are you remembering today
LAURA MUSSELMAN:
When you first asked that question? I got this wave of just hundreds of people, but my thoughts today I think are drawn to a couple of the women I work with at the Central California Women's Facility who are peer caregivers. And they're still alive, thankfully, doing the incredible compassionate work that they do. But our suffering immeasurably, there's a very, very high rate of cancer at that prison. And we have a few peer caregivers, real leaders in the group who are currently dealing with that and going through treatment and are scared and in need of care, and they are still going in every day to show their patients all the love and support that they possibly can. And I'm just in awe of their strengths and resilience.
GAIL MARQUARDT:
Well, I can really appreciate that as well. I wonder what being a caregiver does when you are ill yourself. It sounds like being a caregiver in that position really gives you strength, perhaps even if you're ill yourself.
LAURA MUSSELMAN:
I think it's twofold. I think it's hard to know so intimately the gaps in care that are so real and to maybe see yourself in the position of your patients. And at the same time, I know something that we speak a lot about in our grief support group. There is the motivation that it gives all of them to somehow, I don't think they could do any better than they do, but to somehow try to find a way to do even better,
FERNANDO MURILLO:
If you don't mind me.
LAURA MUSSELMAN:
Yeah.
FERNANDO MURILLO:
Laura, is it okay if I provide a little context around this too?
LAURA MUSSELMAN:
A thousand percent.
FERNANDO MURILLO:
So during my incarceration, I had a life sentence. I had a 41 year, 41 to year life sentence. I came into at the age of 16. And at the age of 17, I had a conversation with myself coming to the realization that I'm going to die in prison. So when I was a peer caregiver, I would perform my role as if I'm taking care of a version of myself that was eventually going to pass away. So I felt like my approach to my profession was I'm taking care of a version of myself that's going to be vulnerable. How do I best serve the person that I'm coming in contact with? And so I feel like speaking from a perspective that has, from a person that's been in this position, I would approach going into every room, every dorm with the philosophy, taking care, different versions of myself. And I hope that makes sense.
GAIL MARQUARDT:
Wow, I never would've thought of it from that perspective. Thank you for being incredibly vulnerable to share that story, because I think that really illustrates the perspective from which you approached the incredibly important work that you did. Thank you for sharing that. Thank you, Lauren. Fernando, so very much for joining me today and sharing your very powerful stories about this incredible work. The stories of other caregivers who are doing such amazing work to help people die with dignity in a situation that often doesn't offer much dignity to people who are there. I really appreciate all of your time and sharing your thoughts with us today.
LAURA MUSSELMAN:
Thank you so much for having us, Gail.
FERNANDO MURILLO:
Thank you Gail, so much. And thank you to my colleague Laura Musselman, for inviting me to be a part of this conversation as well. Thanks, Laura.
LAURA MUSSELMAN:
Well, thanks for joining. Can't do it without you.
GAIL MARQUARDT:
And for more information about the Humane Prison Hospice project, visit HumanePrisonHospiceProject.org.