NASW Social Work Talks - EP 135 - Dying My Way: Living with Dignity When Facing Serious Illness and Death

Episode Date: December 16, 2025

In this powerful episode we chat with , palliative care social worker Dr. Arden O'Donnell, PhD, MPH, LICSW, APHSW-C about what it means to live—and die—according to our values. Dr. O'Donnell shares insights from over a decade of work supporting patients and families facing serious illness. The conversation examines the vital role of palliative care social workers in helping people navigate complex medical decisions, communicate their wishes, and maintain dignity at the end of life. Through real-world experience and reflection, Dr. O'Donnell discusses why early, honest conversations matter and how dying can be a conscious, meaningful part of living. 

This episode of Social Work Talks is sponsored by HPCC, the Hospice and Palliative Credentialing Center. Welcome to Social Work Talks. I'm your host, Lori Appleton. Well-known philosopher Friedrich Nietzsche states, one should die proudly when it is no longer possible to live proudly. It is inevitable that 100% of us will die. Do our loved ones know what our values and wishes are regarding our final days? Have we had informed conversations with our physicians so they're able to support and facilitate our desires regarding our treatment and its cessation? When faced with serious illness, do our families know they play a critical role in ensuring that our wishes are respected, let's take a deeper dive into the world of palliative care social work.

We are so very privileged to have as our guest speaker, Dr. Arden O'Donnell, PhD, MPH, LICSW, APHSW-C. Folks, there can be no doubt that Arden is knowledgeable. Arden is a palliative care social worker who is currently a postdoctoral fellow at Boston University. Her doctoral research focused on the role of social workers within interprofessional teams, specifically in cultivation of prognostic awareness. Arden's longstanding commitment to palliative care began with a focus on international public health, working with HIV AIDS patients in Zimbabwe and Lesotho. She launched her professional career as a pediatric palliative care fellow at Boston Children's Hospital and later joined the Dana-Farber Brigham and Women's

Palliative Care Service. Arden is a dedicated teacher teaching social work in health care at Smith College School for Social Work and Boston University. She also teaches communication and palliative care skills to interprofessional clinicians, residents, and medical students as a faculty member of the Harvard-based Palliative Care Education Practice Program. Beyond her clinical and academic roles, Arden is personally dedicated to supporting children who have experienced loss. She is the founder of the nonprofit organization Coalition for Courage and has been a foster and adoptive parent. Thank you so much for joining us, Arden. Thank you for having me.

So you earned an MSW and PhD in social work. You have a unique story about how you were born to be a social worker and advocate. Will you tell us about your father and his role as a gay activist in the late 80s? I mean, I think a lot of people always ask, how do you get into this profession of palliative social work. And I think for most of us that do this work, we had some sort of significant event that happened in our lives that allowed us to sort of see maybe death in a different way at a different time or had a specific impact on us specifically. I will say that my parents were divorced when I was very young and my father came out as a gay man. He was a psychiatrist

and an activist in Houston, Texas. And he was in the community, founded one of the first gay and lesbian counseling centers that's still there in Houston and was a prominent member of that community. And as a result, I really grew up in the 80s with a community that was pretty much dying around me, you know, when I was young.

And of course, my mother and dad also tried to protect me from as much as they can. But, you know, I just remember one time asking my dad, about a funeral or how many he'd been to. And he said he stopped counting at 200. And I just think that's the community. The community was there. And so I started probably out of desperation or desire to do something. I started volunteering at an adult daycare center when I was in high school. I volunteered at a hospice and primarily it did a lot of advocacy for people with HIV. But I'm not sure I knew I was doing palliative care because at that time, I don't even know if

it was, it certainly wasn't a field of medicine. It wasn't until later that I sort of found that this is the thread that's sort of woven through all of my traversing of Zimbabwe and, you know, Lesotho and Sub-Saharan Africa and through pediatric and adult palliative care. I think palliative care is sort of the thread that gets pulled through that and my dedication, I guess, to this. You certainly were born to be a social worker and advocate. We're happy that you did that. Can you succinctly help us understand the role of a palliative care social worker? The role of a palliative social worker, what it is, the first thing I want to say is that palliative social work is its own specialty. It is a medical specialty. And I think that one of

the reasons that it's a medical specialty is because any health social work programs grew up within the hierarchical institution of the medical biomedical community. And so, you know, social workers. And so as people specialize in social work, the individuals who want to be doing social work likely specialize also. So in a hospital setting, you might have an oncology social worker that specializes in breast cancer or head and neck or something like that. And so palliative care also has become its own specialty, social work, hospice and palliative care. And I would say that most health social workers, certainly those who work in hospital settings, do palliative care also. And so I just want to say, like, it is a specialty and it is also a generalist practice that I think that all social workers and all health social workers should have the skills and probably, you know, bring out the skills that we do.

But in the health care setting, I would say that most the things I think of as a palliative social worker, and this isn't just like a list of the competencies in terms of competencies, I think that we're expected to show leadership in the psychological aspects of care, the social aspects of care, the cultural aspects of care. You know, and our doctors and physicians and nurse practitioners are focused a little bit more on the physical and the medical aspects, although there's a lot of, I think, role blurring that happens on interprofessional teams, which is the foundation of palliative care. But I think as a role that we play, what we're really trying to do is support whole person, value-based, person-centered care. And I think we do that through bridging communication, through advocating for understanding what patients and families really hold as important and what matters most, and then helping advocate for that. Um, we do a lot of navigation of not just the healthcare system, but as people traverse this end of their journey, sort of in the last, as they, if they're facing a serious life limiting illness, we sort of act as a guide to help them. We've been down this road many times before. A lot of people don't know how to, um, not even what to ask for. The questions to even ask are really hard to know if you're not in this world or in the medical, the medical community.

So we do a lot of that. I think there's a lot of crisis management. There's a lot of coping of helping people process through the impact this illness has had. And then there's always the family work that you do. I think we play a big role in family dynamics and helping people understand and work through some of those complicated things that can come up at the end of life and really champions for, I think, dignity, self-determination, and quality of life. I think that's our role. And taking care of the team sometimes too, right? This is not always easy work. So think about if a care worker can play a lot of different roles in inpatient and outpatient settings, but I would say those are our primary tasks. Well, thank you so much for clarifying. That really makes sense. And we're going to be talking about whole system interdisciplinary work in a few minutes. But in an article written on July 17th, 2020, you were quoted as saying, I love this quote, by the way, folks, I learned to focus on the living part of dying. And that is just such a beautiful and meaningful concept. So what are your thoughts about the living part of dying? And can you recall a previous patient who demonstrated how they maximized their life prior to their death? I think that people, again, ask, how do you do this work? And I think that's the piece. I think that when people think of end-of-life work or palliative care, they probably focus on the part that the vast majority of the patients that I work with die. I think that is true. Not every single one, but the vast majority of them do. But it isn't the dying. I mean, the dying is just one piece of the whole process that people, if they have time and they're able to accept on some level their mortality, which is not an easy task. Let's not kid around. It is not easy to do this. But when and if people are able to come to that, then there's so much work that they can do. It's another transition, right? I mean, that's what social workers do. We guide people through the hardest days of their life. And there are so many social workers, health care social workers, but people that are working. I mean, all of the colleagues, hopefully people that are looking, you know, listening to this. This is what we do. It's just a different level of that. But you're focusing on, I feel like, at least for me, on like, what are the things that people need to do if they want to die with dignity or die at peace? And there are transitional, there are things that people want, not just like making sure that the medical decisions that are made for them and by them are linked to, they're called goal-concordant care, right? But their goals of what they want are linked to the values that they hold and they've held their whole life.

And then I think that when people are able to understand at least a portion of their prognosis or their disease trajectory, which, you know, people swing back and forth and understanding this and there's a lot of processing of getting to this piece. But in that process, when people can get to the place of more or less acceptance, then they can do the kind of work that people want to do, which involves asking forgiveness or forgiving people, offering appreciations, telling the people you love them, you love them, thanking people for their role in your life, hearing about your own, the wisdom that you can impart or that you have imparted on people. sort of just, I think it's just about being human and helping people walk through that piece and preparing their loved ones for life without them. Especially if you're a parent, even if your kids are older. I mean, it, you know, someone said you always feel like an orphan when your parent dies, no matter what age you are. And I think that that is true. And I've seen that a lot. And so there are a lot of things that the person who is dying or who's leaving can do work to still care for their family in some ways by, as you said, having honest conversations about what you

want or what you don't want so that if your loved one is the person that has to make a medical decision, that they don't feel guilty about it, that they feel strongly that they made the decision that was aligned with their loved one's values and what their loved one would do. And I think we work a lot around self-determination. So what I think is that I've just seen so many patients do aspects of this work. And I think people do what they can tolerate, whether it's writing letters to your children or your grandchildren. You know, what was important to them? Are they able to do these these end of life tasks? And I think it's hard to do. It's really hard to do. And it's hard for families to allow them to have the space. You know, we want to protect our loved

ones. They want to protect us. All of the family dynamics that come out during your life actually show up at the end of life. They don't just disappear. And so I think that navigating some of this stuff and maybe forgiving themselves for things, they're human. We're all human and none of us are perfect. And I think it's coming to terms with that. Spirituality is another thing that is so important to people at the end of life, no matter what it is. It may be reconciling something or becoming closer to something. And so I've seen patients do pieces of that work that's always really inspiring to me. This is such profound information.

So we look forward to talking with you in a moment about more about palliative care social work. So listeners, we'll be right back. This episode of Social Work Talks is sponsored by HPCC, the Hospice and Palliative Credentialing Center. Take the next step in your professional journey with the Advanced Palliative Hospice Social Worker Certified, APHSWC, credential tailored for experienced hospice and palliative social workers. This unique certification involves a

process that validates and evaluates your expertise in this specialty. While licensure assures minimal competency to practice in a field, certification indicates mastery of a defined body of knowledge. Showcase your expertise in social work. Take the first step today and learn more by visiting www.advancingexpertcare.org forward slash HPCC. And we're back. We're chatting with our guest, palliative care social worker, Dr. Arden O'Donnell. Oftentimes we think of death as being maudlin. I think that's one of the reasons that we distance ourselves so often from talking about death. But when you and I spoke about your role as a palliative care social worker, you expressed feelings associated with joy, fulfillment,

and the meaning of purposeful work. So what do you think, what do you find is most rewarding about your work? It is difficult, but it's rewarding. And you really feel like you made a difference, right? I think that, and I think there are moments in that, but I think, and it's not every single patient, it's not every single time, just like I'm sure every social worker feels that way, but the times where you feel like, okay, I made a difference. I helped someone on this part of their journey. I was able to guide them. And so I find that that is a really rewarding piece. The other thing is that, I mean, I think one of the basis of the NASW use code of ethics as a social worker is really around self-determination and patient autonomy

and sort of really having a commitment to justice and what that looks like in all of these different settings. And I just think that in this work, there are lots of places we can make a big difference. And sometimes it's something very small. I see, I think a lot of the work that we do has been characterized by the phrase like boundary spanning. And again, I think social workers boundary span in lots of different ways. But I think that those pieces, it's really rewarding to be able to help people navigate some of these edges and span, you know, there are lots of skills that it takes to be a palliative social worker, communication skills. But I think communication is really one of the major interventions. But it's about advocacy. It's about

translating what is happening or what the doctors and nurses are saying to something that people can understand sort of social workers do a lot of taking all the information and trying to sort of package it into something or be really cognizant of what are we how do we slow down the pace and the intensity of this conversation that's being had to help the patient and family sort of take a breath and be able to actually take in the information that's being given to them because in so many times this is so overwhelming and sometimes it's working with the family to be able to help them support their loved one. And maybe your loved one can't tolerate some of these conversations, but you can. But I guess I just find it rewarding. And I think that, you know,

I think we do help people and help patients and family. I mean, I would say families a lot. You know, yes, there's a lot of work you can do with patients, but families also want to support their loved ones. And as you said, you know, do right by them. And I think that's something that is, you know it just you feel you feel like you make a difference i guess that's pretty much it right and i've been thinking about this and it seems like your work is not only powerful for the living but this is transgenerational so if i am with my family and you are helping them work through the serious illness and the ultimate death of a family member, I'm watching and I'm learning. So as I move forward in my life, then I pass that down. So it seems like there's a ripple effect

from the work that you do. And some of it is modeling. I mean, people don't know how to deal or how do you sit with somebody beside them when they're dying for hours. This is not easy stuff for families to navigate. It is hard if you know someone, the end is near or in sight to sit in the uncomfortability of mortality. And it brings up things about your own and other people. But sometimes it's just saying like, do they have a favorite book? Maybe reading them a book, sometimes giving people a job, or it's okay to hold their hand or play their music or take a little time for yourself. I mean, there are lots and lots of, if you get into this work, there are lots of works and situations that I'm sure

everyone has in their own field. But I will say that, you know, sometimes patients want their loved ones near them when they are dying, and sometimes they don't. And I've seen time after time, situations where someone has sat vigil for hours or days, and then they go to get a cup of coffee and their loved one dies and they are wrapped with guilt around, oh my gosh, I can't believe I left. How could I have left at that exact time? And I always feel like for whatever reason, I don't know if that patient could have left with you sitting there or they didn't want you to watch them, you know, maybe something. And even if they're not conscious, I feel like there is something deep in us that has that knowing. And so I think even being able to normalize that

for patients and families, that if that happens, this isn't a failure on your part, because I mean, the other thing I think that we do, at least in hospital settings and certainly in hospice, and what I want to say is this work continues from inpatient to outpatient, but certainly to the hospice social workers who are there helping people at home or within facilities and guiding people in that way also. But I do think that it is important to sort of normalize and be able to just help people understand

because we traumatize people in these situations. I mean, dying is sort of traumatizing. Being in a hospital situation is traumatizing. When I'm teaching students, I always say like, let's just try to do as much as possible to do the least amount of trauma. What we know is at baseline, we are going to be traumatizing these people.

Like, I don't know how you're going to go through this without having some of that and acknowledging it and having, I guess, just giving the space for people to be human in all of this and then help them navigate some of the pieces that they may be struggling with. Well, I can't see our listeners, but I can feel them relating to every word that you're saying. You shared how invigorating it is for you to practice with an interdisciplinary team where the patient and the family are at the center of the network. What are some of the outcomes that can be achieved when you have a whole team providing treatment and intervention? Well, I think that that's one of the things I love the most about palliative care in this field is that

it really is truly interprofessional. And that was built from the very beginning of the movement and has continued. And I think that it really is different if you are working on a team that respects you and values you and understands the work that you do in a way that most people don't. We're trained in lots of different theories. And I think that one thing that's fulfilling is for when your team knows that and they're able to help you and you're able to sort of articulate that. So what I will say is I draw on a lot of theories when we think about family systems, When we think about trauma-informed care and how to do that and how to teach that to others, when you think about sort of person and environment and the intersections of all of these different previous life experiences, people's, you know, lots of people have had previous experiences. And what I think is great about the interprofessional team is that we can go in there as a team and people can navigate some of these conversations.

But the doctors, you know, and the nurses, their goal is really, and they're trained in aggressive symptom management. Like the key that we want the whole team is to have the best quality of life and for people to live as long as possible, as well as possible, but not be forced into or have decisions that actually take them down a road that is incongruent with what they would really want, such as, do you want to be at home? some people do want to be at home some people don't but if you want to be at home then there's certain things that you may have to choose or not choose as a result and that depends on someone's narrative and I think the interprofessional team is really good at there's a lot of role blurring that goes on interprofessional teams I think that certainly in palliative care that you see that I may ask a question when we're talking to a patient that's you know psychosocial but I may ask about symptoms. And I'm not looking for the same thing that the doctor is looking for, the physical symptoms. But what we know is that symptoms are driven by things other than just physical pieces,

like what's under, what is the meaning of the symptom for people? And so I think that even within the physical aspects of care, social workers can play a role. And then I think that our doctors and nurses, practitioners and PAs are trained in communication skills and they know how to reflect emotion and they know how to hold some of the traits that we have as social workers and are able to really do that and provide this holistic care. But it's nice to have people that have expertise in each of these and that you value them and you can sort of go between them. And then you can imagine if this is the work that you do, having a good team and being able to talk to your colleagues and debrief about difficult situations and check in about people's transference

and countertransference issues that obviously come up in some ways. I think in the best teams, it feels a bit like a family. And I think that you really gather that. I think the other great thing about being a palliative social worker is that in most cases, probably in almost all of them, they're either owned by the palliative care team or there may be some different ways that they're thought of. But so I think the work that we're really asked to do at the top of the license really is the clinical aspects and whether that's psychodynamic or, you know, looking at how we bring in other things, we don't do as much, I would say, discharge planning. Of course, there are pieces of that, but, and aspects and bridges that we make in certain areas. But I think that in most cases,

that is something that's also really fulfilling in being able to do the work is to be able to really, I think, practice at the top of your license or what feels to be. It also sounds like you've been in the role that you are playing as a palliative care social worker is that you're a facilitator. I really liked when we were talking prior to the podcast that you were saying, are you hearing what your physician is saying? And then asking the physician, did you hear what your patient said or calling him or her by name? So I thought that was very, very powerful. Can you speak to that for a moment? It takes a lot to really take in this information and patients understanding isn't just any more thought of as a single breaking the news, bad news conversation where someone gives you a time based prognosis. I think that there's been a lot of research done about sort of how people gain prognostic awareness, sort of their understanding of their illness and their trajectory. And that's an iterative experience that I could check in. Did you hear what you think's going on?

How much information do you want to know? What are the things? And then going back and sort of like finding the gaps in understanding or what you see as a social worker and then feeding that back to the team. And then the team can come back in and reiterate some conversations or maybe clarify something that didn't happen. But I think that those pieces of the sort of iterative aspect that happens and the repeating and reinforcing information rather than, you know, we're not the primary giver of prognostic information, but we do a lot of repeating or questioning,

asking leading questions or planting seeds of growth as somebody is walking through this. Great, thank you so much. Arden, for those of us who have become curious, and I am one, about palliative care social work after hearing this podcast, How might we learn more about the skills and certifications which will help us pursue a career in the field? As I said, what I think is anyone that does health care, social work has some would do well to shore up any of their palliative care skills.

And actually, there is a program that was done in collaboration with NASW and is on the NASW website under the continuing education. I think you'll probably make a link, but it's the Educating Social Workers in Palliative and End-of-Life Care. And this is a curriculum that's interactive. I believe you get about eight CEUs if you do it. So it's its own package, but it is, there's a lot of role play. There's a lot of sort of just understanding the skills in lots of different ways, case examples, and really thinking about how do we integrate primary palliative care into our practice. And I don't think that's just for health social workers.

I mean, I think that even as private practice therapists, your clients are either going to face this or have someone they love face this and you're going to be supporting them. And so I think sort of having an understanding of the field. And then so I think S-BEC is what it's called. And I think that it is, as I said, in collaboration with NASW, I think that that's a really great place to start. I think for people who maybe are already doing this in a way and feel like they have a level expertise, I will say that there's the certification, the APHSWC, which is at the end of my name, but it is a certification that's an evidence-based certification for hospice and palliative care social workers. And you have to be, have done this work for a while. I believe

that you need about 4,000 hours of this work in order to even qualify for this. So we're looking at a little bit more of an expertise, but that is the equivalent of what I feel like our doctors and our nurses have in terms of, you know, nurses are also accredited by the same agency, HPCC, which is the Hospice and Palliative Care Credentialing Center. And they do a really great job of ensuring that these tests are unbiased and really reflect the competencies and are able to do this. But I think that having that certification is really, I think it can help.

And I also feel like it helps provide a career ladder for individuals. There's other opportunities for people to have that, but maybe some people argue like, do we need to have specialist credentials to compete with the doctors and the nurses in the healthcare setting or to sort of be there? But I think it helps.

I think it helps build credibility for us. And I think that having a specialty in this area And then being able to build on that because there are some specialist skills. I wouldn't expect somebody to be able to talk about or navigate some of these conversations without a good amount of time on the ground. You know, you sort of learn this and then you build it into your practice and you get better and better, just like anything else. But I do think that that certification is a really great certification. I think that we just did a I just was part of a survey of these individuals because it's at its fifth year and people really want to renew and they feel like it brings credibility. And I found that myself. So and they do discounts. I mean, though, I'm sure that maybe you can put some information in the notes. But if you are somebody who might be interested or want to have that kind of certification, I think that looking at that website and looking at the certification is really, and I think it feeds into just an expertise in this field and gives us one more thing to be able to stand on and feel proud of as a profession, but, you know, social work and health social work and specifically palliative social work. Well, thank you so much for giving us that information. And I want to honor you, Arden, and all the palliative care social workers who walk with us as we face serious illness and death. And for all of those who are listening, I propose that we do not wait until we are faced with terminal illness.

now is the time to examine our values so that we can prepare and face our own deaths with self-determination thank you for tuning into this episode of social work talks you can find more information about arden for research and our topic in the show notes section at socialworktalks.org We leave you with the profound words written by our speaker, Dr. Arden O'Donnell. The patients I learned the most from are those who lived their lives to the fullest until they could not. These individuals accept their fate in time to look back on their lives. They take inventory, celebrate their accomplishments, tell people that they love them, ask forgiveness. and most importantly, especially, forgive themselves by accepting that they are human.

They say and believe that they have lived a good life. They mourn what they will miss, write letters to future grandchildren, and allow themselves to be angry. But in the end, they accept that their dying is a conscious part of their living. We hope this program has enticed your curiosity and created questions, which will lead you to become involved in rich, meaningful discussions. Thank you for listening. Thank you for having me.