Three Days was Enough: Accepting Hospice Care

Listen to ASCO's Journal of Clinical Oncology essay, "Three Days was Enough" by Dr. Teresa Thomas, Associate Professor at the University of Pittsburgh School of Nursing. The essay is followed by an interview with Thomas and host Dr. Lidia Schapira. Having medically adjacent experience, Thomas shares her personal story of helping her family come to terms with hospice care for her father.

TRANSCRIPT

Narrator: Three Days Was Enough, by Teresa Hagan Thomas, PhD, BA, RN

My dad agreed to receive hospice on a technicality. It happened after weeks of trying to get him home oxygen. My brother drove him to the oncologist's office, and I helped him get into the wheelchair. He did not complain, but just asked me to hold his coffee mug, smiling because I snuck him a fresh donut. Three months before, dad was well-maintained on treatment for a neuroendocrine tumor. It was not until two separate, non–cancer-related hospital admissions kept him off treatment that the cancer saw a chance to hijack his body, take over his organs, and lead to a precipitous decline.

As we waited for the oncologist, I told dad not to downplay his shortness of breath. But he wanted to look good enough to get chemotherapy the following week, the only way he saw to resolve his lymphedema and keep the cancer at bay. He failed the oxygen saturation test by one point, and having not qualified for home oxygen, we drove home disappointed without further recommendations or support. The sense of defeat was maddening. We were batting down an escalating onslaught of health issues at home only to be turned away from the professional caregivers when we most needed their advocacy. I was enraged that all the work arranging the appointment led to nothing and disappointed for my dad as he sat consumed in his pain and shortness of breath. His oncology team was supportive when his health was stable but did not have the skills or systems to proactively help us manage the dying process. I channeled my disillusionment with the health care system by calling in favors for a palliative care consult, both aware of my privilege but also stopping at nothing to give relief to my dad.

A few days later, my dad and mom were willing to accept hospice care for the singular purpose of getting oxygen. I was sitting next to my dad in his home office, amix of posters from his travels abroad and family wedding photos surrounding us. When he asked for my thoughts about hospice, I carefully laid out what I saw as the benefits—namely, he would immediately qualify for home oxygen and get a level of care beyond what his oncologist could offer.

But as I tried to give him all the words I knew from my professional life, I just saw the man who raised me staring back at me hoping for a way out of the painful, weak state he was in. He was not giving up on treatment or controlling the cancer. I was not going to change that. I wanted that, too. Now his eyes were sunken, all the fat gone from his face, and his entire body working to breathe. His belly was large, the tumor taking over, and his legs swollen with lymphedema. I felt the boniness of his shoulders and back. There was no coming back from this. I was in disbelief that he was dying so quickly, selfishly wanting him to stay but also knowing he deserved a pain free death.

He agreed to enroll in hospice, with the plan that he would unenroll and try to get more treatment. I wanted to be right there with him, treating this as a temporary detour and not the end. I looked him directly in the eyes, searching to see any recognition that he would never get treatment again and that this was it. Not seeing anything, I tried to open the door to discussing death, reminding him how tenaciously he had fought to keep this cancer controlled and acknowledging the need to focus on his quality of life. I desperately wanted to have an open discussion about dying, but his stoic Irish mentality kept us from having that heart-to-heart.

Initially, I was disappointed that my attempt had failed, but now I recognize that achieving a good death did not depend on verbalizing that he was dying. He was living and dying, hoping and accepting, trusting and doing his own thing. Our plan was logical and irrational. I remember thinking people in these situations needed to face reality. Here with my father, being so direct would be counterproductive. He very likely recognized what was likely to unfold, and hospice allowed him the unstated permission to let go. I called his oncologist, and together dad and I asked to enroll in hospice.

The oncologist responded, "We are so glad you finally made this decision."

By that night, the hospice nurse was sitting at my parent's kitchen table preparing us. Dad was sitting in the front room, finally relaxing in the plush leather lift chair we impulsively bought for him, with the oxygen machine humming at this side. We grilled the hospice nurse with questions. She kept saying how fast patients with cancer seem to go downhill. She told us without telling us. She gave us breadcrumbs, just enough information to get us through each step of the dying process, giving morphine, getting a hospital bed, giving Ativan, and finally seeing him pass.

Three days after enrolling in hospice, he died at home withmany of our family at his side. Just like the hospice nurse said he would, he died on his own terms: after he had said goodbye to all his siblings, after the infant he and my mom were fostering was placed with his adoptive parents, and after all five of his children were at home with him. He died with dignity, mentally capable until the last hours, and surrounded by love. His exact terms.

I am not sure what conversations were had between my dad, my mom, and his oncology team in the weeks before he died. I do not know if they openly discussed the need for palliative care or hospice. Dad's providers might have, and my parents willfully or naively missed the clues. I can imagine for the oncology team, discussing hospice meant admitting that the treatment plan had not worked as intended and that they could not meet my dad's needs. I know for my parents, discussing hospice would give air to the idea of death and therefore was not only avoided but actively discounted. As a researcher focused on palliative care, these dynamics were not new to me. I recognize how the stigma surrounding hospice and palliative care prevents earlier provision of quality end-of-life care. That knowledge did not prepare me when it was my dad dying. Awakening to the reality of dad dying was incredibly difficult when every hour we were managing his frenzy of health issues.

Three days is used as an indicator of poor end-of-life care since people are eligible for hospice when they have a 6-month life expectancy.1 My dad did not openly discuss hospice until days before he died, but the number of days did not matter for my dad. What he was now able to do—because of hospice—during those days mattered more. During his last 3 days, dad meticulously rewrote his will, had it notarized by a hospice social worker, visited with his siblings, and made amends for long-past transgressions, enjoyed his favorite foods—fresh Boston cream donuts and black French press coffee—and spent quality one-on-one time with each of his kids and most of his grandkids. Although death was never directly discussed, neither was the idea of unenrolling in hospice. Hospice was what was allowing him to maximize the mental and physical capacity he had left.

Those 3 days took my family from being stressed to our limit trying to manage dad's disintegrating health to feeling like we were being led by competent, caring hospice nurses who picked up our phone calls and responded within minutes. Now a year since he passed, I have a newfound appreciation for the complexity of discussing death with families and an even greater desire to advocate for improved end-of-life care for patients with serious illness. Despite his dramatic decline in health, my dad had a good death thanks to his hospice team. Three days was all it took.

Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, Professor of Medicine at Stanford University. Today we're joined by Dr. Teresa Thomas, Associate Professor at the University of Pittsburgh School of Nursing. In this episode, we will be discussing her Art of Oncology article "Three Days Was Enough."

Our guest's disclosures will be linked in the transcript.

Teresa, welcome to our podcast and thank you for joining us.

Dr. Teresa Thomas: Thank you. It's great to be here.

Dr. Lidia Schapira: It's great to have you. So let's talk about your beautiful piece, which is very personal. Thank you so much for writing and sending this and sharing this. In your piece, you say that you waited about a year before you thought about writing. Can you tell us a little bit about why you waited and why perhaps for you it was important to take some time to process the experience and then decide to share it?

Dr. Teresa Thomas: Absolutely. Well, I think it would be false to say that I waited a year to write it. I think I was writing it for a year. And like a lot of researchers, I really process things through writing, trying to make sense of the passing of my father, of course, but also what this means for me professionally. It's very ironic that everything that I study in my research, things that we encounter clinically, unfolded right there extremely poignantly with my father. And like anyone, I'm just trying to make sense of it and trying to find lessons learned where we as nurses, healthcare providers, researchers, can push things forward a little bit, which I think is what I was trying to do with the piece because it did raise a lot of questions for me and is making me rethink my research questions and how I conduct myself and what the important areas of our field really are.

Dr. Lidia Schapira: So let's talk a little bit and go deeper into that. First, I wanted to talk a little bit about your vulnerability, personal vulnerability. It's your father we're talking about, and you clearly adored this man who is your father. Can you talk a little bit about the emotional aspect of dealing with the family's acceptance finally, or the family's readiness to call hospice in?

Dr. Teresa Thomas: Absolutely. I mean, it's all of the emotions. When I think about it, it was this very awkward place of being one of the few medically adjacent people. I'm not a practicing clinician. I am a researcher who has a nurse training. So it was this 'I know enough and the family's relying on me and I'm going to the appointments.' And being that in between, between the oncology team, my father, my mother, my siblings, people asking questions. And at the same time, I know this story. So it was personal and distant. I knew what was happening, that he was dying. I didn't want to know that he was dying. And it was just a crazy time too. Every day there were a thousand things going on. I didn't put this in the piece, but I was also extremely pregnant at the time, so had hormones going. My mom was getting sick herself with cancer, ironically, right as my father was dying. It was just absolutely insane. And now we're trying to unpack all of that. But to be that person that people are relying on to understand what's going on, to shepherd them, and also not really wanting to know, it was a hard juxtaposition. I knew what should be happening, right? I knew that we should be having these discussions about palliative care. I knew that he was eligible for hospice, I knew he should be on hospice, but I wasn't ready. And professionally, I wear that hat of a nurse and a researcher very reluctantly. When I'm dealing with my health care, and especially someone else's healthcare, I do not disclose, I do not try to interfere. And for Dad, I had to step up and push and interfere a little bit, which is extremely awkward and not comfortable.

Dr. Lidia Schapira: Let's talk a little bit about readiness, because readiness means so many things, but it's such an important theme here, and it's often such an important theme when we look at the literature about end of life communication. Can you talk a little bit about how this experience has informed the way you think about readiness, readiness to accept that it is indeed time for that call to hospice?

Dr. Teresa Thomas: Absolutely. So I think as a researcher and as a clinician, you want that discussion, you want the documentation, you want all the ducks in a row. You need to understand, do they get it? Is their head in that space where they're making plans? Can you think about what you want your death to look like? We need it said, we need it laid out so that we can check that box. And obviously, there's a lot more than checking boxes when this is done correctly and in a patient centered way. We didn't have time for that to happen, and yet everything still laid out. Now, I write in the piece, my dad was just very stoic and had a history of not talking about emotions. And I don't think it's all too different than his generation. And maybe men in general or there are patients that are just like that. There were never those deep conversations with the oncology team. There basically wasn't that conversation even with me.

So beyond that, I mean, beyond just saying we had that conversation, what the piece is trying to say, or what I was trying to say was that it was the things that he did that were more important, he literally rewrote his will in his last days. In his few moments of clarity, he was sitting there. He was a wills and estates attorney. So, I mean, he was fully equipped to do this, but this is what he was doing. He knew that he was dying. He never voiced it. He never made a specific plan. But we had a care team in his oncology team, and absolutely in his hospice team, who just shepherded us and allowed him to do everything that he would have done even if he had had six months in hospice. And that's what was more important. He got what he wanted, and he was allowed to do what he wanted. And that's now how I'm thinking about end of life care and where our field in research and in executing that needs to go.

Dr. Lidia Schapira: I think that's incredibly profound. I think one of the lines that I enjoyed the most in reading and rereading your essay is when you just describe what actually happened and how he relaxed into the chair. He relaxed when he had oxygen. I mean, it wasn't so much what he said, but what you saw there was even the physical signs of somebody who says, "Well, you know, something else is happening here." There was a transition that you actually appreciated there and captured. Am I right? And did I read that right?

Dr. Teresa Thomas: Absolutely. That was the turning point. I mean, we are a big family. We never make impulse purchases. But my sister and I, we just drove out. We didn't care about the cost. I think my mom gave us her credit card. She never gives us a credit card. And we just said, "We don't care. This is our dad. We're buying this." And to see him after this, just extremely precipitous decline where every breath in and out and that searching for air and all of those signs, even to take away a little bit of that, absolutely felt so good. And he wasn't totally pain free, but he had oxygen. I mean, the most basic thing you need. So, yes, that was a very good feeling.

Dr. Lidia Schapira: So the labor of breathing can be overwhelming and in a way distressing. Whether we call that painful or not is maybe just a matter of the language that we use.

There's another theme that emerged in your writing, and again, I wanted to hear your reaction to this, and that is failure. You use the term in terms of, in so many different ways, perhaps the failure of the oncology team to develop or deliver or propose a treatment that was really good. They were done. So they- in some ways, there was a sense of failure. It was a bit of a failure of capturing the right moment to make the hospice referral. It wasn't quite what the books say we should be doing. There's a lot of that in the essay. Can you talk a little bit about how you understand failure and how that concept may in some way interfere with our ability to act or appreciate things?

Dr. Teresa Thomas: There were no specific failures as more of a secondary caregiver at the end who stepped in to assist my mom. There were likely things going on that were under-recognized, unappreciated, or because nothing was said directly that there could have been soft leeways into. "Let's talk about hospice." That, I think, my parents did not want to hear, and that door was closed. That's where additional layers of support in how do we talk about this as a family? How do we introduce, well, hospice isn't end of life care necessarily, but there are additional supports that hospice allows that your typical oncology practice can't provide.

I remember one conversation when my mom called me up and she was telling me that she had just met with Dad's team, and she was saying, the oncologist said, this is the last treatment, that after this, there's nothing left. She was going on and on, and I wanted to basically rip the band aid off for her. And I said, "Mom, they're telling you that it's time for hospice." "No, absolutely not, Teresa. Hospice was not brought up. Don't bring up that word to your father. All they were saying was, this was the last treatment." Now we can talk about that with my mom and say, "Do you see what they may have been laying the groundwork for?" And she says, "Yes, now I understand. But at that time and place, that soft entry, that door was not being opened by them." And I don't think that's untypical. I think that we did the best that we could with the situation that Dad had.

Dr. Lidia Schapira: So, Teresa, I'm struck by the incredibly generous and wise framing that you use to talk about this. You could have said, "Oh, my goodness. It was only three days," and instead you chose to say, "Three days were enough." So I wonder how you did this, how you actually looked at it from that perspective, because so much of what happens to us is defined by the lens through which we see it and the words we use to construct the narrative. So tell me how you got to, "Oh, my God. They weren't ready, and there was so much failure," to, "Hey, three days was enough."

Dr. Teresa Thomas: The three days were important for me because one year ahead of my dad getting sick, I was writing a paper with one of my mentors, Yael Schenker, and one of the wonderful med students that we work with and we used it as an indicator of poor quality end of life care. Did the patient enroll in hospice within the past three days? And we had these wonderful discussions with Yael and Bob Arnold and Doug White and everyone here at the University of Pittsburgh involved in palliative care about what does that mean? And is this just a random quality indicator with no real world value? And I respect all of their opinions because they do see this clinically, whereas as a researcher, "Oh, this is easy for me to analyze and I have a citation that says this is a quality indicator, so let's use it." And I thought, "Oh, isn't the world ironic? This is exactly what happened with Dad." And it was. I mean, maybe part of it is to our Catholic faith, and threes are very important so I think that was a little for my family.

But there was nothing else to do. We opened up, we had conversations, we had heart to hearts. We found when dad was mentally with it, we sat down with him. I gave him his coffee. He always had a doughnut, he was pre-diabetic. Who cares? There was ice cream, there were donuts, there was coffee. All of a sudden we went from, "Don't give Dad any pain meds," to, "Where's the morphine? Give him some more." And we timed it so that each one of us kids and his wife and his siblings, we got to say the things that, man, if it was any other illness or any other setting where we weren't there, we would have lived our entire lives regretting not having had that. Would I have wanted him to be around when the son that was protruding from my belly was born a couple months later? Absolutely. Would I have wanted more trips, more meals? Yes, yes, and yes. It wasn't going to happen. And it didn't. That's selfish. I mean, that was a selfish desire.

He lived a wonderful life. He closed out everything in those three days. He said his goodbyes. He was ready to go. And our family is a strong family. We carried my mom through it and we carried each other through it. And for him, he deserved to go without the pain, the loss of control, the loss of being himself. When we moved him into the hospital bed, that was it. We had to help him go to the bathroom within the last 12 hours of life. And I thought, this is not my dad he's going to check out because this is just not how he's going to live his life. Is that worth it? No, that wasn't worth it. And that was him. And that's what the hospice nurse told us. Everyone checks out when they're ready. That's Dad.

Dr. Lidia Schapira: I can't resist the urge to ask you this question of how you're taking this life lesson, this really important story which you framed and articulated so beautifully here for us into your work.

Dr. Teresa Thomas: So my work has always been in patient centered care, as nebulous as a concept as that is, and promoting patient self-advocacy. How do patients say what they need? Which is the great irony, right? That my work is corresponding exactly with what I experience and see. And I think that's probably why I love this research question. And now I see that not just the cancer experience, but framing that end of life care. And what does hospice mean? I think we had the best hospice team in the world. I don't see how any other hospice team could deliver as great care. And then, of course, I'm looking into, is all hospice like this? What are the hospice outcomes? And I realize, unsurprisingly, that we absolutely are spoiled, and this is not what most people experience. So I'm lucky that I'm in a place here at the University of Pittsburgh and with researchers that we have a palliative research center. This is easy for me to pivot into this place and to think about how do we create teams of clinicians, policies at a local level, at a state and a federal level that allow people access to really good clinicians at the end of life - clinicians that understand absolutely there's a medical management part just as much there's a human part that's happening here with the patient and with the family.

What was it that our hospice team did? It's the easy things. They gave us one sheet of paper, one phone number, "Call this number. We will pick up. You do not need to give us your medical record number. You don't have to tell us a history." We called that number any time, and someone answered our questions. So basic, patient centered care, so basic. How do we do that? How do we do that at a systems level? How do we prepare patients to work with their clinicians when that's not there? These sort of high touch, but very difficult to innovate in clunky segregated systems. It's given me direction, and it lets me feel like I'm helping my family in retrospect, too.

Dr. Lidia Schapira: In some ways, it keeps you connected to your dad.

Dr. Teresa Thomas: Absolutely.

Dr. Lidia Schapira: Yeah. Well, thank you so much. It was a really beautiful, beautiful piece. Art of Oncology is about telling a story. But stories can inspire, stories can lead people to find their own path towards advocacy or research so thank you so much. To wrap this up, do you have a final message for our readers and listeners?

Dr. Teresa Thomas: Everyone has their experience with end of life and with palliative care, maybe, but definitely cancer care, and I just hope that it strikes a chord and makes people think about how we can make sure that families and patients receive the best care at end of life.

Dr. Lidia Schapira: Well, thank you so much, Theresa, for your story and for what you do. And until next time, thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review, and be sure to subscribe so you never miss an episode. You can find all of ASCO shows at asco.org/podcasts.

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Guest Bio: Dr. Teresa Thomas is an Associate Professor at the University of Pittsburgh School of Nursing.