Abstract
The Journal of Palliative Medicine’s “Tell Us More: The Palliative Care Oral History Project,” seeks to tell the story of Hospice and Palliative Care through informal interviews with pivotal leaders in the field. In each episode, hosts Drs. Ricky Leiter and Billy Rosa, along with research assistant Dr. Yilong Peng, sit down with an HAPC luminary and do what our field does best—ask questions, listen, and reflect. In the third episode, Drs. Leiter and Rosa interviewed Ms. Shirley Otis-Green, founder of Collaborative Caring and a pioneer in palliative social work. What follows is a transcript of their conversation, edited lightly for clarity.
As I learned more about that, I felt like I was finding my people. And so my first experiences were in hospice, and then that led to oncology because so many people in hospice have cancer. Doing clinical work in oncology, it turns out that a lot of people have pain. This was before we had a palliative care service. I was working at a wonderful institution doing wonderful things, but we didn’t have a pain management program. When that began to evolve, I was fortunate to be tapped as the social worker to assist in developing our initial pain service. My mind was literally blown. It was like, “Oh, my gosh, people don’t have to die in horrible, terrible pain. There are some other options.”
But, this led to enormous regret for the patients that we hadn’t been providing the kind of care that they should have been getting all this time. We had a kind of evangelical excitement to tell everyone what we had learned. How were we going to let the world know that there are better ways to do this? And the trajectory just kind of jumps from there.
I was blessed to find like-minded folks who were equally passionate about trying to change the trajectory of how care was being delivered. And I was extremely fortunate to be part of the group of the Project on Death in America, which brought together people from different disciplines and different geographic locations and different settings and different patient populations, threw them in a room and shuffled the dice and let us interact with one another and learn from one another.
It was literally life-changing. I’ve got a number of close colleagues that you are planning to interview from the Project on Death in America’s leadership development work. They were really trying to help fund and seed the field. Being one of the social workers in that space was transformative.
The opportunity for the Project on Death in America came with a caveat: you had to write a grant proposal, and you had to have a research project. I have a master’s in social work, not a PhD, and I didn’t know how to do these things. So, I trotted over there, and I said, “I’m wondering about…” and I literally remember sitting at Betty’s desk and her looking at me so kindly and saying, “This will change your life. If you decide not to do it, that’s absolutely fine, you’re doing great, just keep doing your thing. But if you decide to do this, it’s a two-year grant and you will then be in a different category and world. You’ll be seen as a ‘researcher.’ You’ll have brought money into the institution—you will be in a different category, you will meet different people. We don’t know where that’s going to go but this is giving you a unique opportunity.”
She was very supportive and said she would help. So, I trotted back and applied. And oh my gosh, they meant it when they said they would help. Eventually, I ended up in their department, Nursing Research and Education, and they opened doors for me all along the way. In addition to the training that they did with End-of-Life Nursing Education Consortium (ELNEC), they always had so many various other grants coming in opportunities for research and education and program development. All of those opened doors meet other kind and good people.
There are so many things I love about the principles of palliative care, but arguably the most important to me is that mindset that says interprofessional collaborative communication, practice and support are really essential. This Podcast is interviewing people who live that, who really believe in flattened hierarchies; who aren’t all, “I am the king, and you are mere serfs.” There was this really wonderful recognition that we were all in this together, who recognize that there are multi-dimensional aspects of suffering, and that having an interprofessional team approach is the best way to address that. No one of us has the answer, and it’s only by putting our heads together that we will have at least a better chance of making the quality of life for that particular person and their family a little bit better. That seemed like such a worthy and wonderful thing to be a part of, and I found such generosity among these people.
There were so many different palliative research programming activities that were going on. Amy Abernathy and all of these wonderful people that were out there changing the world and who recognized that you didn’t have to defend why social work might also be important, or what chaplaincy might also have to offer, or why child life was important to be considered, or certainly what pharmacy brings to the table. Everyone had this very welcoming and wonderful perspective. I’d be remiss not to say that I began doing pain stuff, because that was the door that I first entered. I went to the Association of Oncology Social Work’s annual conference in Florida (I remember the day well). I had submitted an abstract on pain management looking at what our role might be. There was another person—only one other—but there was another social worker doing something on pain and her name was Terry Altilio, from New York. Here was an opportunity to learn from another person. She was just a bit older than I, a lot wiser, and so gracious, and we shared information as she was developing and moving forward in this field with the same passion, to better understand how we might reduce suffering. What can we do for the people we are seeing that have a serious illness, with whatever their background might be? We did a little ritualized bonding and said, “Will you be my forever best friend?” And she said, “Yes.” Eventually, we edited the Oxford Textbook of Palliative Social Work together, and our paths have stayed connected for decades since.
I was fortunate to be in the initial cohort of the first interprofessional palliative care program at the University of Lancaster in Great Britain where I met like-minded people from around the world. Learning from and with people from Europe, Africa, Australia, New Zealand, India—each of those experiences strengthened my understanding of how suffering is both a universal and incredibly unique experience. There are so many things we need to and can learn from one another. “How do we manage this [condition] in a country that doesn’t ‘do opioids?’ How do we manage this in a place that does, but only for those who have insurance and can afford care? How do we do this for people who only speak like us and not for those who don’t?” There have been so many people that I owe a debt of gratitude to from all across the planet. I can’t think of a single palliative care person—you guys included—who’ve not been the kindest, most generous, humorous, warm, friendly: “how can we help, what can we do’ kind of people.” So many wonderful experiences.
We tried so many different things. We’d pilot over here with one clinic, there were some we could never access; they were really clear on that. How does Radiation feel about us? They’re in the basement; they haven’t seen a new face in a long time. Maybe it’s okay. I say that now with a laugh, but it was painful because we would sometimes still get referrals after the symptoms were really out of control. I remember the moral distress. It didn’t need to be like that. We didn’t have to wait. I am here to tell you that I still feel that distress.
Now, I’m part of another project that is wonderful. We’re so excited. We’re going to be doing something that maybe is going to be transformative. We’re delicately dancing around how to let people know that early palliative care is more than three months before a person dies. There’s nothing early about three months before you die. ASCO [the American Society of Clinical Oncology] says we can integrate palliative care from the moment of diagnosis. Then why aren’t we? There’s evidence, there’s data. How is it that we’re still hitting these walls? People have a thousand reasons—and God bless them all—but there’s, “We don’t have enough capacity, we wouldn’t be able to see everyone, if they did refer early-We just can’t do it.” I struggle with that. I think if we locked hands and all of us in healthcare believed that healthcare is a human right, and we could change how we care is delivered.
I’m going to keep channeling my inner Betty Ferrell. (Thank you, Betty). One of the things she always said—she had so many words of wisdom—“people don’t know what they don’t know.” Conversely, what we’re doing is stuff that is known. That’s the part of the angst in all of this: this isn’t rocket science. We know how to provide better care for people. We have the tools and resources. We can educate people. We could have a better-prepared workforce. The fact you’re saying, “Well, we don’t have the workforce,” well, we could. We absolutely could. So a lot of what I do now is education, because we need to up our game. If you all used social workers to the top of their license, we could do so much more. We don’t like to be considered ‘physician extenders,’ but we could run with the germ of that idea. Give us a different title, but lets run with that idea. All of us can extend everybody. You all can be social work extenders. I can be a chaplain extender. It doesn’t have to be a demeaning kind of thing, but if we all work to the top of our license and if we all were willing to share the pie, the pie could be bigger. I believe that in the core of my body. That same frustration of, “We’re still hitting the wall of the people that are saying we can’t, we couldn’t possibly. Oh no.” The evidence is there that we could provide better care for more people, more of the time, have less regret, have less angst, have less complicated bereavement, and probably have less cost. This is the definition of a win-win! So I’m still evangelizing, though I’m still clearly not very effective, because the world is still not hearing it.
I think it is interesting. It’s all on your time scale, right? From a geological timescale, we’ve moved really fast. But from any individual person’s point of view, oh my gosh, we’re nowhere near where we need to be, right? Back to this other study that I’m involved in: one of the things that we’re trying to standardize is for earlier palliative care referrals. The data is pretty clear: from the moment you make the referral to the first time that person is seen, that time can be measured, not just in days or weeks, but sometimes in months. So if I wait until that person is having intractable pain, and we’re not able to see them for days or weeks there’s something about that time scale that feels too slow.
As we were prepping and thinking about this, you mentioned patient stories, and so I am here to tell you. When I teach, I say, we need to have both a personal and a professional motivation for this. I want you to, in an instant, be able to tell me why you’re willing to put your head above the weed whacker line. Because it’s going to get whacked and there’s going to be a moment where you’re going to go, “That was not fun and I’m not doing it again.” So there’s got to be a reason to get up and do it again because you’ve got to keep doing it. If I’m Sisyphus and rolling this boulder up the hill one more time, I’ve got to have a reason for that. And so, I will share my own personal motivation. It is my beautiful son, Manne. He is the best guy on the planet. You guys should meet him. He’s truly, truly remarkable in every way. And he deserves the very best care possible. Thank you, Ira Byock (another mentor), for his inspirational book, The Best Care Possible. That’s what everyone wants and everyone deserves. Manne’s healthy, and would that be so forever, right? But I believe the evidence is pretty clear that someday, he will die. And I can hold these two things in my heart, as a mom, that when that time might come, he deserves to have the best care possible. And, at this point in time, I am not in any way convinced that that’s likely to be what he will receive. There are so few places that are prepared to give the person that I care most about the kind of care that he deserves. And so, my job—which is why I go back to your earlier question, “What would you be doing if you could do anything else?”—I’d be doing more of this, because until we get that right, I can’t quit. I’m not done. There’s still work to be done so that everyone’s son, everyone’s parent, everyone’s loved one is going to get the care that they deserve. And that we can say that with confidence.
Joanne Lynn, another amazing person in this field who’s done so much, asks, “what will success look like?” And answers—“it is the reliable delivery of quality care.” Why do the NCP [National Consensus Project] guidelines start with Domain 1, the “Structure and Processes of Care.” This is so critically important. If we don’t standardize this, we won’t deliver the same care here on a Monday afternoon when the A-team is here, as at 2 A.M. on Christmas Eve, when maybe it’s the D team that’s here, the folks who barely know where the bathrooms are and have just traveled in from wherever. If we can’t reliably provide the kind of care that person’s going to need, then our work is not done. That’s my personal motivation.
As for my professional motivation, my very first job in oncology social work was with patients in a regional hospital, where I worked with the chief medical officer in the oncology department. We were doing amazing things, and life was grand. Then, we had this woman who came in with breast cancer, metastasized to the bone, and she was at the end stages of her illness. She was admitted for pain that was out of control. She was hospitalized in our unit, and from the time you got off the elevator on our floor, which was way down the hall, all the way down the hall and into our unit through closed doors, you heard her scream. You heard her scream day after day after day after day. And at the end of your day, at the end of your shift, you’d leave and you’d walk down the hall, still hearing her scream, until you got down the elevator. She was uncommunicative except for her screams. And I share this with you because we, all of us—her doctors, her nurses, the director of the program—gave reassurances to the family that we were doing “all we could,” and she had reached “the ceiling dose of opioids” that we could provide. And I look at your faces, and I see that you guys are much smarter than I was, but I believed our team. I trusted our team. Who was I? “Just the social worker.” That was air quotes for those of you who are listening to this. “Just the social worker.” I didn’t know any better. And eventually, that dear woman died, her family by her side, sobbing, as you can only imagine. All of us want to sob.
I learned, years later, while working at a different hospital, that there isn’t “a ceiling dose.” We were not giving her the state-of-the-art care; that perhaps we, in fact, had provided, dare I now say, malpractice. When I realized that, I literally wept. I still can. I was culpable, I was part of that. As other people were too. That particular woman, that story, now, decades ago, is still in my heart, and still gets me up in the morning, and still haunts me at night, because I did not challenge. I did not say, I wonder if there was more that could be done? What if I did research? What if I did looked into that further? I did not hold myself to a higher standard. I was complicit, and I still weep. And I worry. We always do the: I wish, I worry, I wonder, with our patients, right? Well, I wonder, did that family have later awareness that we did not provide the best care possible? Do they have more complicated grief or perhaps more anger because we didn’t do what we had said we were doing? I wonder…
I feel passionate, and I really do emphasize that word, because I feel passionate about those stories that we all collect, that we all have. We have stories where it went so well we can’t stand it, because sometimes it does, and I’ve got those wonderful folks in my heart too, where we turned things around and we walked out of there strutting, like, “You got this, girl!” We’ve got those stories for when we drop the ball. If we’re going to have sustainable practice, we need to be able to have a way of dealing with moral distress. For me, a good social worker, is always saying, “How can I learn from this experience?” Can we learn to welcome every experience we have and say, “What can I learn from that?” I can learn that social work needs to be able to step up and be more assertive about things that make us twitch. We need to sometimes be the voice of the patient and family that says, “I don’t care if we’re doing everything we know how to do. Maybe we need to know how to do more, because this ain’t working, guys.” There’s just so much that I think we can take from these experiences. And so, when we teach these things, it’s important for us to be able to collect those kind of stories for ourselves and to tuck them away so that when times are tough, we’re able to remember why we do what we do, and why it matters.
Every now and then I’m going to pause, because you guys haven’t been able to get a word in.
I want to go back to the Project on Death in America, PDIA, because that, in some way, it feels like the primordial soup, in a way, of palliative care. Tell us about that experience. What was it like to be in those rooms with that group of people as you were thinking through all of this?
Thank you, David Clark, for recording her stories. There is this idea that here’s this person who is undaunted, who does that exact thing that I’m reflecting on here. Who says, I’m not only going to provide this, but we’re going to try and understand it, we’re going to do research about it, and then we’re going to disseminate it, and we’re going to share it with the world. To the Balfour Mounts and the other good people from all across the world who come as a pilgrimage there. As you say, there’s this incredible distribution of these ideas, and all these seedlings that are out there in the world.
So back now to the U.S. That’s where PDIA is our American primordial soup. So, you have this incredibly rich person, George Soros, who has a mom and a dad (as so many of us do). One of them dies and has a horrendous experience, and one of them dies and has a less horrendous experience. And he says, “Huh, I wonder what…hmm, hmm, hmm,” and puts that together and says, “Y’all need to do something differently, because more people should have this, and less people should have that,” and he gives a zillion dollars. That’s how much, a zillion dollars. The first monies go to the physicians figuring this out. They come together. Then they’re like, oh we should probably include the nurses. And just when it’s down to the last few dollars in the last couple of years, social work was funded too. I say that in recognizing that the hierarchies are still here, and the world is aware of who the people are who have the most influence and power. If you’re going to give the influential and powerful people more influence and more power change things, that all makes sense.
I love the fact that the PDIA experience did indeed create opportunities for us to increase [our influence], it was a tide that raised many ships, and that was incredibly powerful. I personally am blessed, but again, many of the people you’re talking to are going to be telling you this, because those are the people who made PDIA so successful. This group came together in a very intentional way, to share education, and to share strategies: How are you guys making a change in your hospital when [patients] hit the door? What are you doing to make that different? And what are the pilot programs that we might be able to seed over here? How would we evaluate that? What are the outcomes that matter? How are we going to disseminate that? Do we need to have an organization that’s going to pull us together? What would that organization look like? All of this stuff that is just percolating in there. How is this different from hospice? Why is it different from hospice? Should it be different from hospice? So many Socratic questions that we have yet to answer. What is the meaning in life? The existential stuff: What are we on Earth to do? How do we help? Why is this stuff important? All of that has such richness.
At first, we had annual convenings where we all came together-all of the different disciplines; I have this great picture on my wall. We came together, and we would rub elbows and we’d eat together. We would sing late at night. We would go walking in the woods. This was transformative in every way. We got to know these great people on a first-name basis, hang out with them, stand in line in the bathroom with them. All these things flatten the hierarchies and make teams really collaborative.
By the end—let me say this sadly—by the end, the doctors and nurses were still having their combined meetings, while the social work meetings were on literally the other side of the country. There’s a parallel in that American Academy of Hospice and Palliative Medicine (AAHPM) joined with Hospice and Palliative Nurses Association (HPNA) for their annual Assemblies, while our society, Social Work Hospice and Palliative Care Network (SWHPN), holds their meetings on different dates cities, as our resources are more limited. Just saying, there’s a pattern here. I’m not sure that answers your question about the primordial soup, but I think it speaks to some of the ongoing tensions in our field.
There’s a part of us that has bought into the secret sauce of what palliative care offers. And then there’s a part that says, but this is how the world works. There’s a tension in that, right? I struggle with that; we haven’t always lived our principles. None of us has. We’re not superhuman. It isn’t just our field, but our field has such good principles and wonderful values. I think they are synonymous with good healthcare. Palliative care is good healthcare. If only we could apply some of these more consistently… Not only are those principles good healthcare—and I’ve written a bit about this—but these are the principles that I think are just good for people in general. I have a slide that I use a lot that says, in my humble opinion, palliative care is the answer for all of life’s problems. Name a political circumstance that would not be better, if we applied these principles.
Now I’m going to go off on a tangent—feel free to edit this if you want. So we have the right side and the left side. When they have a joint congressional meeting, they talk about crossing over the aisle. I’m like, how stupid is that? Do alphabetical seating. Integrate, collaborate, go to the bathroom together. Great advice, right? These are the things that help you to be able to see each other as “people” and not as an “enemy.” We need to play in the same sandbox and share our toys. And if we can do that, I think we can have world peace, or at least a better shot at it. I’m not going to want to blow up the guy that I just sat next to and joked with and did fun things with… See where I’m going?
Back to the evangelical nature of my perspective, I want to share those principles, and I want us to be able to live these principles in both our personal lives as well as our professional lives, so we can say: these are the values that matter. These are the things that make a difference. Think about what a palliative care fellowship does, whether it’s for social work or nurses or doctors, or our chaplain friends, or our pharmacist friends. The idea that you’re going to learn, to listen, to tell me what matters most. You’re dealing with something going on really serious in your life: whether it’s serious illness, a serious injury, or maybe it’s your son coming out of prison. Tell me what that’s like. What is your lived experience of that? How are you handling it? One of the things that social work tries to do is have a strengths-based perspective. I think that fits in so beautifully with palliative care. Not what’s wrong with you; what’s important to you, what’s happened to you, what can we do better? What are the things that keep you up at night? Maybe it’s your pain. Maybe it’s something that we can help deal with: maybe it’s the biological, the social, the spiritual, or the existential. Maybe it’s the cultural stuff. Maybe you’re afraid to come to our hospital to get your treatments, because your immigration status right now feels a little iffy, and you’re not sure about how safe it is there, and you’re terrified. What are we doing about that? If we live these principles, we’re going to make the world a better place. I like the idea of modeling that and trying to, you know, trying to live these things as best we can, as authentically as we can. I don’t know if that helped, but, yes, the entire experience of PDIA was transformative.
You just heard me do this whole thing of how fabulous my son is. That’s despite me being his mom, not because of me as a mom. There are moments when I am sure that we got it wrong. We just did. And I did. And it’s easy to want to be defended against that. I’m sharing that as not the “big answer,” but I think the answer is on some level deeply personal. It’s going to have to be that level of, deep breath, how do I create a safe space for me to realize that I was culpable in some way to harm. Unintended, by definition, these are good people. You go into healthcare because you’re a good person. That’s my baseline assumption. You create an organization that, by definition, is to do good in the world. The Project on Death in America, every person there meant well. But there are unintended consequences. When we accept the status quo, there’s a lot of unintended consequences. So that’s one of the ways that I try to address that, Billy, thank you for asking.
I like the movie, Apollo 13. You know the quote: “Houston, we have a problem.” Oh my gosh, what are we going to do? Well, they’re not going down on my watch without me at least trying to be part of the solution. So, on my watch, what I want to try and do is increase leadership for everyone. I make a distinction when I talk about that, because most people are like, “You know, I’m not a director, manager, supervisor, senior lead, blah, blah, blah.” Okay, that’s capital-L leadership. I’m talking small letter leadership. Everyone in clinical care needs to be a leader. Every social worker—this is me, looking at you, social work readers—every social worker needs to be a leader. We need to be able to put our heads above the weed whacker line, to challenge authority, to say, “wait, Dr. So-and-So’, as I run behind you and try to catch you as you’re running down the hall to do the amazing things that you do. I need to stop you sometimes. I need to have the confidence in my competence to be able to grab your shirttails and say we need to do better, to grab the shirttails of our organizations and suggest we do better, to make sure that the different people that we interact with are given the support and the mentorship and the important feedback so that we can all do better for the patients that we see, for the institutions that we work with. We have to be able to speak truth to power.
We need to be able to look to our administrators and say, “we need to do better.” In our own hospitals and our organizations. Enterprise-wide, we need to do better. Now that every hospital has been gobbled up by a bigger hospital, that’s been gobbled up by a conglomerate, that’s gobbled up by a bigger conglomerate, and now we’re the hospital that has five satellite places and 57 clinics that are out in the world. Yay for community outreach, but also, boo, because typically, if you’re in those peripheral places, you’re not getting the same services as you would be getting at the mothership, and that’s not okay. We need to say it’s not okay. We need all of our voices to say that’s not okay. Oh, well, there are no social workers there. There’s no chaplains there. They don’t have access to support groups. And that’s okay. No, it’s not okay. If we see this as the standard of practice, not best practice, just standard of practice, that’s not okay. And we need to be able to say that to one another without taking it personally, without saying, “You’re a bad guy because you did it that way.” We need to somehow be able to create systems that work better for more people more of the time. We say people need to be lifelong learners. We need our institutions to be learning [ways] to be new and better with higher standards because our patients deserve that. We can’t provide the best care possible if we know we’re not providing the best care possible.
You asked about mentors? There are so many people that are so wise. Virginia Satir is a family therapist from years ago. Not working in healthcare, just doing her thing and she used such powerful metaphors, and this one metaphor really speaks to my heart and gives me hope. She says: imagine a cradle, and with a baby sleeping in the cradle, and there’s a mobile above its head. And the mobile is in homeostasis. If you put one paperclip on one of the little elements of the mobile, what happens? All of the mobile elements have to shift and readjust to accommodate for that one paperclip, not just the one that you put the paperclip on. And the powerful takeaway from that is changing anything changes everything.
Back to my motivation. I can’t change the world. But maybe I can change my tiny little spot in it. Maybe I can put one small paper clip on one little element. Then everything has to be different. And that is incredibly encouraging. It’s a reason to keep going up Sisyphus’s Mountain. It’s a reason to keep trying. It’s a reason to keep putting your head above the weed whacker line. It’s a reason to keep talking to your colleagues and to the administration and to the powers that be outside of healthcare. To keep voting for people that say healthcare is a human right, to keep saying if we did value-based payments, we could do things differently than if we do fee-for-service. We could change how we deliver care. We could do it. It is in our feasibility. Changing anything changes everything. So that helps to keep me going. Sustainable practice, right? You’ve got to have something that keeps you going.
Right, the Oxford textbook. Oxford’s been doing this for a thousand years. So, the Oxford Textbook of Palliative Medicine came first, and for the longest time, was the only one. Then, God bless Betty Farrell, the Oxford Textbook of Palliative Nursing comes along, and you’ve got two. Time passes. (You see a pattern here). Time passes, more time passes, a lot more time passes. And Betty, in her wisdom, at one point says, “Shirley, come over here. We’re going to be at AAHPM, and I’m going to introduce you to our Oxford Textbook of Palliative Nursing editor. And you all ought to talk to her about doing something for social work.” So only because of my mentor did this experience happen; with Betty sharing so generously about how they did it for nursing, and inviting us to think about how we might do it for social work. I worked with my colleagues from across the country, Terry Altilio. We knew people because it’s a small field. We know those who are doing this kind of stuff. So, we just followed their lead, and we said, “This is a template. This is how they did it. This is how we might be able to do it.” We were blessed that everybody we asked said “yes.” Everybody said, “We need this. We’re delighted to be a part of it.”
We were really tickled that there could then be the Oxford Textbook of Palliative Medicine, the Oxford Textbook of Palliative Nursing, and Oxford Textbook of Palliative Social Work. Yeah, God bless ‘em. I was like, “Woo-hoo!” I will share that, when I die, if it’s an open casket, you will see that I’m gonna be holding the Oxford [textbook]. Yeah, it was a very meaningful moment to launch the book at the AAHPM in 2011. Betty and our Oxford editor found a little room for us to have a reception. I treated my copy like you would a high school yearbook; I had everyone there sign it. We have pictures and it’s literally like a scrapbook. It’s the coolest artifact ever. And yes, it makes my heart happy every time I look at it, because it’s signed by the greats of the field exactly like a yearbook with, “You’re gonna go far,” and, “Glad to be a part of this.” This was such fun, it was just great. Everything about that was wonderful. Then we waited 10 years because we’re slow. But we finally said, we need a Second Edition, and it was great fun to do it again. The field for nursing and medicine changes much more rapidly. You’ve got new medications and new chemical compounds and new immunotherapies and precision medicines that are changing things so quickly. Advances in quality social work care are moving at a different timeline. But we were really delighted to be able to see that come to fruition. It made us terribly tickled.
I think that’s the only way we can have a meaningful life. Those of us who have sat at the bedside of people who are conscious of dying—what a privilege—but sitting at the bedside of people, I truly believe that there is enough regret to go around, there’s enough suffering to go around. You don’t want to add one iota more. So when you’ve sat at that bedside and walked out of that room and said, “Whoa, I don’t want to die like that.” I’ve seen people who have lived their life with regrets, who have not been authentic, who have the would’ves, could’ves, should’ves on top of everything else. Don’t do that. And I’ve walked out of another room, sat at the bedside, walked out of that room and said, “Oh my gosh, what a privilege and blessing to have even been a tiny aspect of that person’s experience.” And I’m touched, and it’s like hosannas are singing and the angels are doing their thing, and it’s just like, that’s what you want to try for. And the difference between the two is not the physiological aspects of their dying. It’s how you lived your life. And trying to live it authentically and with minimal regrets.
Footnotes
Author Disclosure Statement
S.O.G., Y.P., and W.E.R. have nothing to disclose. R.E.L. receives royalties from UpToDate and received a one-time speaking fee from Gentiva Hospice.
Funding Information
No funding was received for this article.