Using the Morbidity and Mortality Conference Model to Explore and Improve Community-Based Oncology Care (Video Program)A patient’s insight and perspective on the quality of care received
7:30 minutes.
TRANSCRIPTION:
DR LOVE: One other thing I was just going to ask is, the man who wrote the book, what was his name? DR WAKELEE: Paul Kalanithi. DR LOVE: And how long did you treat him? What was his clinical story? I guess he’s gone public with the whole thing, obviously, right? DR WAKELEE: Right. He actually died about a year and a half ago, so he was diagnosed about 3 years ago with EGFR mutation-positive non-small cell lung cancer. And he was in his neurosurgical training, actually finishing up his last year. DR LOVE: How old was he? DR WAKELEE: He was early thirties. I forget the exact number. And presented with back pain, and started losing weight, and eventually was diagnosed. And I learned about this from my colleague who’s a neurosurgeon, who I work with all the time, who was just completely stricken with this news. And so I went to meet him in the hospital, right as his first diagnosis was made, and then continued to care for him over the year and a half that he had his cancer before it took his life. DR LOVE: And what did you learn from reading his book? DR WAKELEE: He divides the book — he’s an amazing writer. It’s really a masterful work. The first half is really discussing who he was before he became a physician and as he became a physician. And so it’s divided into “my time as a physician,” “my time as a patient.” I didn’t know all of the details of his life before. It talks about how he grew up and how he had always been sort of fascinated with death. And just the way he talks about it is really poignant. I knew most of what happened from the point of his diagnosis. And actually he really weaves our interactions. It’s a huge part of the story. And so that was what was particularly challenging. I don’t think most of us ever get to really see someone else’s view of a discussion that we’ve had. And yet in reading this book, I did. And he captured, I think, a lot of our discussions. There were only very, very few points where I was like, “I don’t think I said it that way.” But for the most part, he got what I was trying to tell him. And by capturing it in writing, I think, captured a lot of the discussions that we’re having with our patients all the time about how do you keep living? How do you focus on life? How do you get to these decision points? And really was able to put it down in a way where someone who’s not dealing with a cancer journey can look at it and get insight into what we’re doing in the closed door of a patient examination room. DR LOVE: So with the theme of mortality and morbidity, looking back on his case and having read his book so you know what was going on in his head, would you have done anything differently? DR WAKELEE: Well, you always look back and wonder. I mean it’s more, could I have found something that would have worked better? I can’t look back at any of the decisions we made and say, “Oh. Well, I should have done this.” I mean I can look back now and say, “If only it had been a little later and I had access to a different medication, some of the newer things that are out,” but I do that with a lot of patients. I think with every new medication and every new thing that comes out, I always look back and think about the patients I had, like, 5 years ago. I’m like, “Oh, I’m sure that would have worked for that person and given them a little bit more time.” DR LOVE: What about — and we asked this in the survey, too, because, again, we didn’t see too many people who had things they would have done differently medically. But we also asked, what about interacting with him as a patient, as a person? Would you have done anything differently, having read his book? DR WAKELEE: One of the things he focuses on is — he was a doctor patient. And I think we’ve all probably had other people in the healthcare field or people who think that they have medical training, even if they don’t, but the ones who really try to direct. He was phenomenal at not overstepping. But I also felt like I partnered with him in the decision-making the way I try to partner with everybody. But I think it was only towards the end where I said, “I think you’re spending too much time trying to make all of the decisions and thought processes, and let me sort of take over that a little bit more.” But he did a good job of describing that. And I think it’s one of the things that I’m sure we all deal with: You want to help guide your patient. You want to give them the information. At the same time, you want it to be their decision. And where we struggle sometimes, I think, is when someone’s making a poor choice. And I think one of the most striking examples I’ve had recently is a patient with ALK-positive lung cancer whose family members are absolutely adamant that she needs to get a checkpoint inhibitor as opposed to other ALK drugs. DR LOVE: Wow! DR WAKELEE: And so despite — and I usually try to be very open-minded, but in that case, I really felt that having her get a checkpoint inhibitor before either chemo or another ALK drug was really harmful for her, potentially, because she was already quite symptomatic at that point. And I had to put a lot of energy into multiple discussions, to the point of saying, “This is wrong,” which I would never try to do. I was trying very hard to kind of — even if they come in with things that make no sense, to sort of talk through, “Well, I hear you, but this is what I would recommend instead.” And this one, I was like, “I’m not going to do that.” So that was challenging. DR LOVE: As you again saw yourself through your patient’s eyes in that book, was there anything that he talked about what you were doing that you thought was really valued by him, that was important, that you were doing right? DR WAKELEE: He very well understood the message I try to give to my patients of not giving up on hope, of the uncertainty of the future. One of my things that I react most strongly is when a patient comes in and says, “Well, the other doctor said I have 12 months.” That really distresses me, to hear that people would say things like that, because it’s quoting an average. No one knows what’s in the future for any individual. And so I always try to talk about things in ranges, about there are patients who get this disease and they never leave the hospital, and then there are — I’ve got patients — yesterday I had one of my patients who’s been on gefitinib for 14 years. DR LOVE: Wow! DR WAKELEE: She’s doing fine. DR LOVE: Fourteen years! DR WAKELEE: Fourteen years, yes. DR WAKELEE: And I have — there are others like that, right? Who have been living for 10+ years. And she had brain metastases at the beginning. DR LOVE: Wow! That was pre the identification of EGFR mutations. DR WAKELEE: Right. DR LOVE: That was the empiric days. DR WAKELEE: Right. And so these patients exist. And so when a new patient’s diagnosed, I think it’s important for them to hear, “Well, these are the possibilities. And as each step happens and we know what your tumor’s doing, we can kind of narrow in that number a little bit.” But you just never know. And you don’t know what’s about to be released as a new drug or what’s coming out in trials. So there’s always that uncertainty. And so it’s living in the hope of the uncertainty. At the same time, you’re preparing for the potential not good things to have happen. And he really captured that quite well. The only part in the book where I’m not quite sure I said things the way he heard them was when he had failed one of his last lines of treatment. He recalled me saying something, “Well, you’ve definitely got time. You’ve definitely got X amount of time,” which is something I can’t imagine I would ever say. But the way he framed it was very interesting, because he then followed it with, “I think oncologists have to always have hope, too.” I don’t remember his exact phrasing. He said it better than that. But it was very interesting, his insight of saying, well, I think as oncologists, we have to live with that hope with our patients, because they are our friends. They become very much a part of our lives. |