Feb 24, 2020
A doctor finds compromise with a patient for one last gamble.
The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.
Welcome to JCO's Cancer Stories-- The Art of Oncology, brought to you by the ASCO Podcast Network, a collection of nine programs covering a range of educational and scientific content, and offering enriching insight into the world of cancer care. You can find all of the shows, including this one, at podcast.asco.org.
"The Gambler," Katherine E. Reeder-Hayes.
"All he wanted was to go to Vegas. I knew Josh only at the end of his life, far into his story, after an old man's cancer had already wreaked havoc on his young body. At the age of 29 years, he lay in an intensive care unit bed, tethered to the wall and to his many medical providers by high flow oxygen tubing and intermittent and continuous positive airway pressure to deliver as much oxygen as possible to his disease swamped lungs.
His outpatient oncologist told me that like many adolescent and young adult patients with cancer, his attitude toward cancer treatment had been somewhat cavalier. He missed some appointments, declared he needed a day off on his birthday, and so on. But lately, he had been doing his best to make it to the clinic, and his oncologists had already tried two successive lines of therapy for his metastatic esophageal cancer.
On his admission, scans showed striking progression of his disease in a short period of time. My oncology consult team was called in to assist with goals of care. One of our first orders of business was to deal with the question of his code status.
As usual, I started the conversation by sharing what I had observed on his scans. My concern that his cancer was now at a point where more chemotherapy would not change its course, and my expectation that his lungs would soon become unable to take in enough oxygen, even with maximum external support. I explained that if our other best efforts failed, the only way to deliver more oxygen would be to intubate him and use a ventilator.
This conversation is usually somewhat of an art form, a gradual process that can evolve over days as I answer questions, elicit the patient's goals and values, offer emotional support, and give the patient time to think. But in this case, my powers of persuasion had barely gotten warmed up when the patient interrupted me with a stern look.
Doc, if you put me on a ventilator, am I going to die on a ventilator? I paused. This seemed to be a direct question that required a direct answer. Yes, Josh. I believe that you will. OK, there is no way that I'm going to die on a ventilator. Do not put me on one.
A couple of days into his hospital stay, as we toyed with antibiotics and tried to optimize anything fixable that might affect his breathing, while discussing whether getting him even as far as an inpatient hospice unit was feasible, we got a call from the ICU team that the patient wanted to leave. At first it seemed ludicrous. I quizzed the unfortunate fellow leading our team. Leave? He's on 80 liters per minute. What do they mean leave?
Did they make him mad or something? We sped to the bedside. The ensuing conversations were lengthy and many. Patient and palliative care team, patient and ICU team, patient and family, patient and oncology team. The upshot was pretty simple. Josh's big wish had been to go on a trip with his father.
His dad had supported him a lot through his illness, and they had grown closer than before. The initial plan was to visit Las Vegas. However, flying was now out of the question. Instead, they had planned a weekend trip to Nashville to stay at a fancy hotel and visit the honky tonks.
The trip was supposed to have taken place the week that Josh was hospitalized. After mulling it over, he had cooked up what he saw as a compromise. He would leave the hospital and drive to a casino town approximately three hours away for one last great weekend.
He informed me that he had won $1,500 betting on basketball from his hospital bed to fund the trip. And a GoFundMe page was apparently doing well. This influx of cash, in his opinion, erased the major barrier to the feasibility of his weekend plans. As far as I could discern, there was no plan for Monday.
I'd taken care of many patients near their end of life who decided to take gambles, wise and unwise, but I had never been faced with one who wanted to gamble in the literal sense. We discussed the many potential downsides to his plan. The amount of oxygen we could deliver through a portable tank was vastly less than his current need, meaning that he would rapidly become hypoxic.
He might die in the car. He might feel so bad by the time he arrived that he would not be able to enjoy it anyway. The resort was at a higher altitude, and I had little idea whether that change would worsen his oxygenation.
He might collapse in a public place, alarming strangers and traumatizing his family members. He might die alone in a hotel room. I couldn't guarantee that paramedics would honor a "do not resuscitate" form stapled to the shirt of a young, healthy looking man. I couldn't even guarantee that we had a stapler on the unit. Hospice does not, I am almost certain, serve casinos.
I called a psychologist who had worked with Josh regularly in the past, hoping for some backup from someone who had an established rapport with him. I resorted to some dramatically nonmedical language in my attempts to describe the patient's state of mind. He basically has a mental image that he wants to go over the cliff, like the last scene of Thelma and Louise. But this isn't a movie.
Patients with cancer don't die by driving off a cliff. He's going to scare some hotel manager out of their wits. He doesn't even have a plan for what to do if he makes it back.
The kindly psychologist agreed to evaluate the patient, although it is possible he may have been evaluating the oncologist as well. I began my conversations with Josh assuming that either he had not thought of these things or that he was in denial about the severity of his illness. Thinking back to our ventilator talk, however, I gradually realized that he was not, generally speaking, that sort of patient.
I began slowly to wrap my head around the fact that this patient was not afraid, at least not of the things that I feared on his behalf. It was not that he didn't believe the scenarios I presented. To him, dying on the floor of a casino after a great night out was not the worst possible scenario. Dying in a cage in our ICU, the last days of his life orchestrated by others and mimicking the death of a man three times his age, waiting around in the least fun place on earth for his time to die, that was what scared him.
The things that I would want for myself at the end of life-- quiet and calmness, being surrounded by loved ones, help to ease my physical symptoms-- were not things that would comfort him. I was not going to make him a middle-aged man in the course of three days in the ICU. And quite quickly, I began to like him for it. One has to admire the spirit of someone who can hold out against such a large team of experts telling him how he ought to die.
Slowly, with almost audible creaks from our collective old age, the team turned its focus to making the most of Josh's plan. An oxygen tank and wheelchair were procured. Several copies of a large yellow form with a "do not resuscitate" order were signed. The palliative care team provided oral morphine for air hunger. The primary oncologist and nurse urged Josh and his family to contact them immediately if he made it home so that they could mobilize hospice to keep him from returning to the hospital.
We all wished him good luck. As I pressed the button to leave the ICU on the last day of Josh's stay, a thought occurred to me. I turned and walked back into the room. Hey, Josh, there is one more thing I want to ask you.
His face took on a good humored but slightly exasperated look, the look of the teenage boy bracing himself to endure one more well-intended mom lecture. Doubtless he thought I'd come up with one more excellent reason why he should not carry out his plan. Yeah, he said.
Well, I sometimes write stories about my patients. Usually I write about people I've taken care of who taught me something important or made me think about things in a different way. And I think that one day I might want to write about you. Would that be OK with you?
He straightened up in the bed, pushing his hands under himself in the effort to be more upright. Yeah, I'd like that. But just one thing, you have to use my real name. No pseudonyms. And so I'm telling Josh's story, the story of a patient who is young enough and reckless enough to tell us all exactly how he wanted to live the rest of his life, even when his plans did not fit into his medical team's boxes.
Josh made it to the casino. He sent our fellow picture of himself surrounded by what seemed to be groupies. I'm told that he won $1,100 and bought his father a ridiculously large television. He lived for six days, long enough to return home and die comfortably with hospice care. Somewhere I sense he's laughing at me. To the end, his gambles paid off.
For our patients at the end of life, how often do we try to assign them a pseudonym, one that fits neatly into our medical boxes? And do we know how to listen when they ask us to acknowledge their real identities and to help them conclude their lives in the way that fits them, not in the way that would fit us? Perhaps we too can stand to take some risks.
I am grateful that I got in one last gamble with Josh. That, believe me, is his real name."
With me today is Dr. Katherine Reeder-Hayes, who is an assistant professor of medicine at the University of North Carolina, and the author of "The gambler published online July 30th of 2019. Welcome Katherine.
Thank you. Thanks for asking me.
You are most welcome. You are a masterful storyteller. "The Gambler" is such an incredible story of a young man with cancer who is so determined to live the end of his life the way he wants to, on his terms. And he sounds like he taught you a powerful lesson. Tell us a little bit about Josh.
Sure. So I think Josh was challenging to me as a clinician for a reason that I think many of us identify with. I didn't know him very long. And sometimes I think, as impatient physicians, we are faced with situations where something dramatic is happening in a patient's life, and we are the provider who circumstantially needs to stand with them at that time.
But we really don't know them. And we really don't have a relationship or a prior knowledge of them to draw from. And so I really felt like I spent the first few days that I was caring for Josh really just trying to figure out who he was. And particularly, as a younger patient, I think most of us as oncologists care for midlife and elderly patients a lot. And our skill sets at caring for younger patients, particularly those of us who care for solid tumors, are maybe not as honed, or not as sharp, or it's been a little bit longer time since we were in that person's shoes.
So just by virtue of the fact that he was young and he was male, he wasn't a patient that I could necessarily put myself in his shoes or claim to be knowing where he stood, just from a demographic standpoint. But I think it's always easier in these difficult situations when they can be diffused with humor. And Josh was a very funny person. And so I think that was something that he and I had in common immediately. And I think that that initially helped to lighten a little bit what was otherwise, obviously, a very dark situation.
One of the points you make in the essay is that Josh taught you to listen more deeply. And one of the themes in the essay, and one that you just alluded to, is the fact that his youth made him so special. Can you tell us a little bit more about what you learned about listening deeply and attentively to young patients who are faced with a horrible cancer and nearing the end of their lives?
Sure. So I think as a 40-something myself, I hate to think that I am set in my ways, because I think of being set in my ways as something that describes an older person. But I think as physicians, we get set in our ways pretty quickly. There is a culture to our hospitals. There's a culture to the way that we take care of patients.
There's a power dynamic where the physician or the provider in the hospital setting is the one in charge and the patient is the one taking advice. And I think one of the things that was good and challenging about Josh is that he didn't really sign up for that. So he didn't want to do things the way things are usually done in the hospital.
And a patient who reacts like that, I think if we're at our best, makes us go back and question, well, why do we do this this way? Why do we have this rule? Why do we usually try to discharge the patient to hospice?
Well, why couldn't he leave the hospital hypoxic? What would be so-- what would be bad about that, right? And thinking through not only what we usually do, but what could we do? And so I think that was one of the things that I enjoyed about taking care of Josh was that he pushed me to think about not only the way we usually do things, but the way that things could be done. And I think that had something to do with his youth and just how flexible his mind was as a 20-something.
So let's go back to this theme of the power dynamic here that you just talked about and that also is clearly developed in your essay. You describe finding Josh sort of tethered to a wall. And then you describe to Josh what end of life looks like in a hospital and in intensive care settings and so on. And he basically rebels and begins to work on this power dynamic by saying, absolutely not. I will have none of this.
What did it take for you, as the team leader and as the professional who did not have a long standing relationship with Josh, to absorb all this? And how did you respond? What did it do to you?
So I think patients have two things on their side, or at least Josh had two things on his side in this power dynamic that were powerful. I think one of them is that the patient always has the power to refuse, right? So sometimes that's the only power patients have left to exercise is their autonomy, their ability to tell the team no, this is my body, and I'm not going to do that. And I think that's something that Josh was exercising to feel like he was regaining some control of the situation.
And for patients in extreme situations like this, they also have the power to command attention as a dying person. I think as a society and as providers, we have some respect for the immense value of those last days of life. And so I think sometimes we're more prone to listen to a patient and to their wishes and preferences when they have that persuasive argument, that these are not just any five or 10 days of my life. These are the five or 10 days of my life.
And so I think those were the things that Josh had on his side, at a point where perhaps we weren't on the same side-- although I like to think we ended up on the same side-- that were persuasive to me and to other people that we needed to think more carefully about how he wanted to do things. And whether the requests he was making really, really weren't feasible or whether we did just hadn't thought creatively enough about them.
I think Josh was lucky that you were the attending, because sometimes what I've seen colleagues do is actually sort of get-- bear down on their position. And sometimes this could even rise to a confrontation. And it seems you absorbed the message, empathized with Josh, and then worked with him to help him get his way. Is that a correct understanding of what happened?
I hope so. I hope that that's what I did. I think I was lucky in my team. And I say that to say, first of all, that I was paired with a fellow who was a very warm person, a person who is extroverted and just enjoys getting to know people. And she was, of course, younger and more of Josh's contemporary.
And I think they had a good rapport. And so that kept the tone of the team's interactions with him more friendly and warm and collegial, as opposed to I think sometimes these things can get confrontational. Although I think we should always strive to not have them be confrontational. I think the fact that Josh was just a very likable person also helped.
He was putting forth his requests in a forceful way, but he wasn't angry. He wasn't mean. He wasn't abusive to anyone who was taking care of him, even though he really had every right to be.
And so I think his own attitude and personality made it easier for things not become confrontational. And then in the background, there was Josh's primary oncologist. And she was the person that I phoned up and said, oh, you have to let me get to know this person better.
You have to tell me some background. Is he crazy? Has he been a rational decision maker in the past? Fill me in.
And she was very supportive of us trying to do, to the extent that we could, what Josh wanted. And even to accept the responsibility for if he left the hospital and traveled and then found that he urgently needed to be plugged into hospice. When he made it back to his home, if he did, that she was willing to take on the downstream consequences after he left the hospital if he needed further care. As opposed to pushing me to definitively solve the problem in the hospital as though he were a problem. So I think I was fortunate in the whole team that was around me and was connected to him as well.
So here's this young man who says to you, there is no way I'm going to die on a ventilator, and I want to gamble. And there he goes to gamble. So we have the two levels of gamble-- the gamble that this is going to work out and this young man who was in the hospital on 80 liters of oxygen is going to be able to take the trip, and then the literal gamble.
So my question to you, and something I'm sure you've thought about is, what if his gamble had not paid off? What if he had had a horrible death someplace outside of the hospital or in the casino? How did you think about that?
So I think I certainly did think about that. And I have had other patients who made decisions at the end of life that wouldn't have been my decisions, and that I was sad about. And it hasn't always worked out. And they have had deaths that I thought incorporated more suffering, either for themselves or for loved ones, than I was wishing for them.
And I think although we were able to rejoice for Josh and be so happy for him that his gamble did work out for him, and that was certainly a happy ending to this story, we didn't know that at the time we were making the decisions. And so I think that is the hard part of truly letting patients have autonomy, is that we may be able to see a future, maybe not the definite future, but a future that isn't a happy ending. And that to truly respect people's choices means being able to let them go anyway, certainly with informed consent and with making sure that they understand your concerns.
But I think that's part of listening to patients is that when we get answers we don't want to hear, if we're confident that the patient has listened to us and understands our side or our concerns about them, then we have to give them that same respect in return when they're telling us, yes, I've heard you. Yes, I understand your points. But that's not-- that's not me. That's not my decision. That's not what I want to do. And I think it's hard. It continues to be hard.
Let me go back to this idea of Josh-- Josh's youth influencing this whole process. And in what ways do you think that being very young shaped these findings and these conversations? And how would you react to a middle-aged Josh?
So I think being young made Josh courageous in a way that perhaps he wouldn't have been if he was middle-aged, in a few ways. I think even for a person who is physically very ill and has plenty of evidence that they have advanced disease, I think it is very difficult for a 20-year-old to truly imagine themselves dying. And that's appropriate in most circumstances to feel a little bit immortal when you're in your 20s.
I think that can be a bad thing if it causes people to be in denial. But I think it also imparts a kind of bravery. I think the choice that Josh made was a courageous choice. I think also by being young, many times that's the time in our life when we don't have as many ties to people who are dependent on us, right?
And part of what enabled Josh to make the choice he did, he did have some family members and he had some concern for them and their concerns and emotions, but he didn't have a spouse whom he had a commitment to and had to think about their feelings. He didn't have children who needed to be considered, whose mental health needed to be considered, their ability to say goodbye in a certain way or to witness or not witness certain things. So I think that gave him a freedom. So I think a middle-aged person might have different ties, different concerns, and also different kinds of fears about the end of their life.
So those might make the story play out differently. But I've certainly had middle-aged patients who also didn't want some of the things that we would imagine they wanted at the end of life. And that's OK too.
That's a deep reflection, and I thank you for that. How long ago did you look after Josh?
I believe we're coming up on a year.
And how long did it take you to process through it and turn it into this beautiful essay that's full of humor and respect and love for Josh, by the way?
Thank you. I would say it happens in stages. I think anytime I lose a patient in a particularly memorable or emotional or even traumatic way, there are stages. In the immediate term, I think probably the most therapeutic thing for me almost always is talking to colleagues.
And in this case, I think there was some joy and humor in the reflections with colleagues about taking care of him and about the things about him that had really stood out. I think that's one stage. Because being a writer, I often will put something on paper about an experience with a patient that's been particularly meaningful pretty quickly, I mean within weeks perhaps, but it's not usually a finished something.
I kind of jot down what really struck me, or perhaps the outline of something, or a message that I got out of that situation. And then I sort of tuck it away and then go back to it later. And I think that's sort of the process I went through with this story over the course of a few months.
That's incredibly helpful. Thank you for that. My final question is about your fellow. Was your fellow OK with how the story unfolded?
I think she is. And I don't think she would mind my saying her story and his story intersected in an interesting way in that, at the same time that we were doing this end patient consultation together, she was making some hard decisions about changes in her career planning, and in the direction that some people were pushing her to go. And that she had been encouraged to develop her career and her future plans in a certain direction, and she was coming to feel that that wasn't the right direction for her. And really needed to pull the trigger on just saying that out loud and making some changes in her plans for training so that she could get back to a place where she really felt like she was doing something that was right for her.
And so in a way, I think Josh was an inspiration in that sense to do something that is hard and may feel scary, but that ultimately is going to be true to who you are. So it was, I think, a good thing for us to all work through together in that sense.
Well, thank you, Katherine. It's always a pleasure to read your work and a real pleasure to have a chance to have this conversation.
Well, thank you so much. I really appreciate being invited. Thank you.
You're very welcome.
Until next time, thank you for listening to this JCO's Cancer Stories-- The Art of Oncology podcast. If you enjoyed what you heard today, don't forget to give us a rating or review on Apple Podcasts or wherever you listen. While you're there, be sure to subscribe so you never miss an episode.
JCO's Cancer Stories-- The Art of Oncology podcast is just one of ASCO's many podcasts. You can find all of the shows at podcast.asco.org.