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Join Vickie Leff and Terry Altilio, both palliative care social workers, as we delve into their book, Mirrors and Windows: Reflections on the Journey in Serious Illness Practice, which offers a profound exploration of the experiences of health care professionals, including palliative social workers, in the world of serious illness care. Discover the significance of empathy, compassion, and cultural competency in palliative care, while gaining valuable insights into the challenges and rewards faced by those dedicated to providing comfort and support in times of need.

Vickie Leff is a palliative social worker and an adjunct instructor, UNC School of Social Work, Chapel Hill, NC. She has worked in the field of medicine for over 35 years, specializing in oncology, palliative, and hospice settings, and can be reached at Serious Illness Conversations.

Terry Altilio is a palliative social worker.

They discuss their book, Mirrors and Windows: Reflections on the Journey in Serious Illness Practice.

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Transcript

Kevin Pho: Hi, and welcome to the show. Subscribe at KevinMD.com/podcast and get CME for this episode by clicking on the CME link in the show notes. Today we welcome Vickie Leff and Terry Altilio. They are palliative social workers and editors of the book Mirrors and Windows: Reflections on the Journey in Serious Illness Practice. Vickie and Terry, welcome to the show.

Terry Altilio: Thanks for having us.

Kevin Pho: So I’m going to ask each of you to briefly share your story and journey to where you are today. Terry, why don’t you go first?

Terry Altilio: Sure. I started as an oncology social worker over 30 years ago, in a local community hospital. I did that for about seven years, and then I went to Memorial Sloan Kettering in New York. I stayed there for about seven years, and then did about 15 to 20 years downtown at Beth Israel Medical Center, all doing palliative care and working during the building of palliative care as a field, which was an amazing time to think about retrospectively. An amazing time. And then I resigned. I did not retire; I resigned. Since then, I’ve been working on books and doing talks.

Kevin Pho: And Terry, for those who aren’t familiar with your field, tell us exactly what a palliative social worker is.

Terry Altilio: A palliative social worker is usually working on a team, either in hospice or in acute care settings. Now there’s some palliative care going on in the home care environment too. We really bring the skills of social work to the team in terms of understanding family dynamics and, on our better days, social justice issues, and really working with the team to identify and meet the psychosocial needs of patients and families who are dealing with serious illness. It’s not a specific diagnosis; palliative care has now infused many diagnoses. We work in the ED. We work in the ICU. It’s very eclectic, and very exciting and interesting work. Social workers join those teams, and the teams are usually nurses, physicians and chaplains. We are always joining, if you will, with the extended families in the ICU and the teams in the ED, so our work is a constant process of joining with others to build and create the best kind of setting patients and families can have while dealing with serious illness, given the problems in our health care systems.

Kevin Pho: And Vickie, tell us your story and journey to where you are today.

Vickie Leff: Well, it’s very similar to Terry’s. I’ve also been working in medicine as a social worker for over 35 years. I also started in oncology, and I’ve worked in palliative care, with a little sprinkle of hospice. My particular focus, other than providing the best care possible, has been on the health care providers: folks like myself and other people on the team. I’m always wondering how we do this for the long haul, because Terry and I have been doing this for a long time, and it’s often a struggle. It’s often very, very challenging, and we talk about it among ourselves all the time. I think that was part of the foundation of this book, and Terry can speak to this better than I can: to give that voice. Because I worry all the time about how our colleagues and we ourselves get through this work, given how difficult it has become over so many years.

Kevin Pho: And Vickie, let me ask you: What keeps you going in this field? Palliative care is inherently a very, very difficult field. You see very difficult situations and cases every single day. What keeps you going?

Vickie Leff: I love palliative care. I love it because it gives me, as a clinician, an opportunity to do a couple of things. One is to be there at a moment when folks might be having the hardest time of their lives, and to try to be helpful to them, their families and the team members. It’s redundant, as they say, to call it a team sport, but all of us have a lot of impact on what happens to folks. And I really enjoy the opportunity to translate what somebody and their family might be going through to the team, through maybe a different lens than they’re used to from their training, so we can all come together and provide the best care possible at that moment. The patients and families are what keep me going.

Kevin Pho: The book that both of you edited is titled Mirrors and Windows: Reflections on the Journey in Serious Illness Practice. So, Terry, how did this book come together?

Terry Altilio: Truth be told, Vickie, Ann and I were at an annual meeting in New Mexico, sitting around a table having dinner. I’ve been first editor of the Oxford Textbook of Palliative Social Work, and I’m third editor of a guide for health social workers, which is really moving palliative care along. The textbook is about specialty work; the guide is about primary palliative care, because what we’ve come to realize is that if patients’ and families’ needs are going to be met, palliative care has to be infused all through the health care system. And in fact, many social workers are very much doing palliative care in their day-to-day work, and some of us are specialists in ethics, pain management and the like.

So we were sitting around the table, after I’d done the Oxford textbook for the second time, the second edition, and somebody said to me, “So what’s your next book going to be?” I said, “The only book I have left in me is a book of reflections. It’s the only book I have left in me.” And these two, Vickie and somebody named Ann Kelleman, said, “Oh, we could do that. We can self-publish it. We know how to do that.” And I was like, “Oh, self-publishing? I don’t know anything about self-publishing.” And that’s how this idea, this last book I have in me, became what we’re looking at right now, Mirrors and Windows: Reflections.

And, Vickie, help me with this, but I think what we have really come to realize is that, in addition to informing people who are doing the work, this book has enormous potential for teaching, because it actually brings the academic work to the real world of clinicians. It brings the joy, it brings the humor, it brings the fear and the anxiety, all of it, from the real world of clinicians who have been able to stay in the work. So that, I think, is a message in itself. There are about 49 authors in this book, and they are in different places in their careers, so they’re speaking to the work from different perspectives. I certainly didn’t realize, and I don’t know if you did, Vickie, how valuable this work can be for teaching.

Kevin Pho: Vickie, tell us some of the stories that are included in your book. Just give us a sampling of what readers can expect.

Vickie Leff: Well, I don’t know that I can say it any better than the contributors did. We asked them to write a brief essay, under 700 words, about a very generic question: How do you do this work, and how has it impacted you, both in reflecting on yourself and outwardly? How do you make that human connection? The stories we received are so honest, beautiful and genuine. I can’t do them justice, but I can tell you that the content is what I assume all of us as health care clinicians talk about with each other all the time: that story that stuck with you, that patient you just couldn’t connect with, that ethical issue that kept you up at night over and over again. The great things, the joys and the challenges of this work are told through their eyes.

The value of that is that although we’ve been talking to each other about it, I think it’s often been in private, and what I loved about Terry’s idea is that this would come to the public. It’s not only for the world to see what this work is all about, but, as she said, it is such an incredible way to teach each other and, at the same time, validate each other around the difficult nature of this work. We cannot pretend that it’s not difficult and hard. We know that, so we can mitigate it. We’re not going to get rid of it, and hearing each other’s stories is so validating: someone’s first patient death, how they went and cried in the stairwell, what that meant to them and who came to help them. Or the one we featured in our excerpt on your blog, from Chris Andre, who talked about what he brought home from a particular case and how it impacted how he spoke to and listened to his young children. Just very, very poignant, real and genuine. I think that’s what’s unique about it. This is not a teaching book. This is a book that can help people understand what this work really looks like and feels like.

Terry Altilio: As I was listening to Vickie, I was also thinking about my neighbor, who has nothing to do with health care. I gave her a copy of the book, and she read it. It was interesting to me, because she’s a layperson reading the intimate stories of folks who do this work. And what she came away with was, “I’m going to take the poem that’s in the book and put it in my packet of papers for my daughters, for when I get sick and when I’m coming to the end of my life, because that’s the way I want to be taken care of.” And I thought to myself: Who would have thought? These reflections, on some level, not only validate and engage the work we do but also affirm the patients and families, what they have taught us and what stays with us forever. We change their lives, often, not always, and they certainly change the lives of many clinicians who do this work.

It’s those singular moments. You asked what keeps you in the work: It’s those singular moments that stay with you forever. And there’s the knowledge, which took me years to figure out, that you do not always know how you have impacted the life of another person. You don’t get told about the power of the work we do. I think that’s an important message for clinicians to keep in the back of their minds, because only every once in a while do you get an opportunity to learn that.

Kevin Pho: So, Terry, you said earlier that we could learn so much about the world of palliative care from reading these stories. Tell us some of the overarching themes you’ve noticed in collecting them, and what specific things clinicians can learn from reading these palliative care stories.

Terry Altilio: There are a couple of things I was thinking about as Vickie was talking. One of the things that is really powerful for me is the social workers who present situations that are not always ideal and figure out a way to make meaning in them: how to create the best circumstances for this family, for this patient. Some of that is humorous, and it asks us to put our judgments aside, to put our judgments in the parking lot, and look at the strengths people have, not the ones we want them to have, not what we think is an ideal situation. Social workers are great at that, because we’re taught to look at people in their environment. On our better days, we’re great at that. So that was one of the things that touched me deeply.

The other thing that is really unique, I suppose, for social work in some ways, is that we are, Kevin, a minority in health care. We’re a minority discipline, just like chaplaincy is a minority discipline, and there is therefore a need to find a voice and make an impact. Sometimes that impact is related to social justice, to equity, to aspects of care and aspects of our systems that people don’t want to hear about. So what you see in some of these reflections is the social worker saying, “If you don’t have a voice, you need to find your voice.” Because we as a profession purport to be social justice advocates, and we have not done a grand job of that, as you can tell by looking at the world we happen to live in.

So those are some of the things that touched me. It was also just wonderful to be able to ask folks to do this, and to see their ability to put something with meaning into 700 words, with no references and no bibliography. This is you speaking, and you’re going to be accountable for it. In your life and in your setting, somebody’s going to read this, and you’re going to be accountable for it. Some of it is amazingly rich and lovely, and I’m sure it surprised the colleagues many of us work with.

Kevin Pho: So Terry, in terms of who contributed, were they primarily clinicians? Were they other members of the health care team? Just give us a sense of the breakdown of these stories and who contributed them.

Terry Altilio: They were all social workers, and we tried to select social workers who have been or are in active practice. What other criteria did we have?

Vickie Leff: That was it: Have you worked in this work, and are you currently doing it? While the voices of academic folks and so forth are certainly interesting, we really wanted to hear how you get through your day and what has stuck with you, as opposed to the teaching and so forth. So clinicians, really: all clinicians.

Kevin Pho: So, Vickie, we have an audience of clinicians on KevinMD, primarily physicians. From listening to both of you and from reading this book, what are some messages physicians specifically can learn from the palliative care world that you can impart to them?

Vickie Leff: Well, gosh, that’s a big question and a big ask. I think primarily, what they might glean from the reflections is the work we all have to do ourselves in order to be present and genuine in the work we do with our patients and families. That’s taught to social workers from day one, and I don’t think it is as much a part of the curriculum for doctors as I would like it to be, but it is really critical. I was just reading the piece on your blog, Kevin, about genuine connection, from Jennifer Tillman, and about the interactions, and I know this is a pretty recent discussion in the field among physicians. I’m so glad it’s being discussed. Social work has been doing this for a very, very long time.

I think reading some of these reflections can validate and normalize the actual work we do, because it’s never really perfect, and it’s OK that sometimes things don’t go well. We try to learn our best from them, and in humanizing that, I think physicians could learn a lot. They can also teach each other. I think they would resonate with the stories, the emotions and the impact, and then they could translate that to their learners, students and fellows. When someone asks, “So what’s palliative care like?”, they could say, “Here, read this 700-word essay, and it’ll give you a taste,” a real taste, not a didactic one, nothing other than someone’s true situation in this work. So I guess it’s helping them be self-reflective, because that’s so important to being able to be genuine and real and to make those connections with our patients, families and team members and, as Terry said, the extended families in the ICU, the ER and so forth.

Kevin Pho: Vickie, when you asked your contributors to write these stories, did you get a sense that writing them was cathartic, or even therapeutic, for them, given how difficult their stories are to tell?

Vickie Leff: I’m so glad you brought that up, because that was the response we got from so many people. First, they were so gracious to agree to this, and then we often got comments afterward that said, “This was so powerful for me to write. It was so helpful to get it out there, because we don’t always have time to do that.” We didn’t set out for that to be the mission. It wasn’t intended as, “OK, we want these folks to have this phenomenal experience.” We wanted to bring to light and give voice to what we’ve all heard in the past. So thank you for bringing that up. Yes, it was very much a cathartic experience for many of the contributors.

Terry Altilio: Yeah, I want to go back to your previous question, about what docs can get out of this book. One of the things we’ve been talking about, and that I think about a lot, is that demoralization in physicians has a lot to do not only with the pressures of the external world and all the demands on them, but also with the fact that they look at outcomes and don’t necessarily value the relationships they have with patients and families. So if you look at the outcome, and the outcome is not what you want, or not what your institution wants, you feel like you have not done a valuable service. What these reflections show is relationship, the value of relationship.

I think that if our docs could look at these reflections and understand the power of their relationships, in addition to what they do to folks and for folks and all the other important parts of their job, if they could prioritize the value and power of their relationships, the process of those relationships, there would be less demoralization. The outcome would be the outcome, but by valuing the process of how they got there, and what that relationship means to patients and families, I think they would feel better about the work they do. So for me, part of what this book does is speak to all clinicians about the value of relationship and the power of relationship, what we learn from those relationships and what we give to others through them. Our hope is that folks will take this book and use it in team meetings and for education. Some of it is funny, and some of it will make you weep, and that’s the span of the work. Some of it is funny, some of it makes you weep and some of it makes you angry. So, yeah.

Kevin Pho: We’re talking to Vickie Leff and Terry Altilio. They are palliative social workers. The book they edited is Mirrors and Windows: Reflections on the Journey in Serious Illness Practice. Now, we’ll ask both of you to share some take-home messages with the KevinMD audience. Vickie, why don’t you go first?

Vickie Leff: I don’t know that I can say it any better than Terry just did. I think this book really is an opportunity for anybody in health care, whether they work in serious illness or not, since that’s just where these experiences come from, to understand how powerful relationships and human connection really are in health care. It gives some phenomenal, beautifully written, honest examples of that.

Kevin Pho: And Terry, your take-home messages for the KevinMD audience?

Terry Altilio: My take-home message is probably in the title, and Vickie shared this with me a couple of days ago. It’s in the title, Mirrors and Windows. This is a book that invites us to look at ourselves, in mirrors, and at our circumstances, and it invites us also to look through windows at the other, at what might be possible as you look through windows, and what you might be able to create. So I love the title. The title, and this will be my last word, I suppose, actually came from an article I read a long time ago in The New York Times. The author was writing about underserved communities and minority children, and it said that children of privilege need to learn to look through windows instead of looking at mirrors, and that underserved children, minority children, need to learn to look in mirrors, to look at themselves and at others who are like them. That’s where the title comes from. I think it’s just a lovely title, and that’s what I’d like to leave folks with.

Kevin Pho: Vickie and Terry, thank you so much for sharing your perspective and insight, and thanks again for coming on the show.

Vickie Leff: Thank you so much for having us.

Terry Altilio: Thanks a lot. Bye-bye.