But Where is My Doctor? The Increasing and Relentless Fragmentation of Oncology Care

Listen to ASCO's Journal of Clinical Oncology essay, "But Where is My Doctor? The Increasing and Relentless Fragmentation of Oncology Care," by David Mintzer, Chief of Hematology and Medical Oncology at the Abramson Cancer Center of Pennsylvania Hospital. The essay is followed by an interview with Mintzer and host Dr. Lidia Schapira. Mintzer stresses the need for oncologists to make an effort to maintain relationships with patients as cancer care becomes more fragmented.

TRANSCRIPT

Narrator: But Where is My Doctor? The Increasing and Relentless Fragmentation of Oncology Care, by David M. Mintzer, MD (10.1200/JCO.23.00805)

For the past 7 years, I have cared for Michael, a man with pseudomyxoma peritonei. He has undergone two aggressive surgical resections with hyperthermic intraperitoneal chemotherapy and endured multiple chemotherapy regimens, all of which resulted in questionable benefit.

Recently, his health has declined due to progression of his cancer, and he has had frequent admissions for infectious complications, obstructive symptoms, and several fistulae. I had always been his attending on previous admissions unless I was away, but when I last saw him, he asked me why I had not been his doctor this time. Even before he asked, I felt guilty for not being there for him.

For most of my career, I would see my own inpatients on a daily basis, rounding before, and sometimes after office hours. Currently, owing to system changes that likely have evolved with most practices and hospitals, only one of us sees inpatients on the teaching service, with the rest being off service. This happened long ago for our obstetrical, primary care, and other subspecialty colleagues, but for as long as possible, I held onto the belief that in oncology, we and our patient relationships were different.

While most of the kerfuffle over the past few years in medicine relates to the electronic medical record and its effect on our lives and on physician-patient interactions, I think the fragmentation of care—while less frequently acknowledged—has been as relentless and impactful though more insidious. While most published articles on fragmentation define it as patients receiving care at more than one hospital, my focus is on the fragmentation of care within our own practices and institutions.

Our patients are at their sickest and most frightened, thus most in need of us, when they are hospitalized. But now, instead of providing care with a consistent presence, patients are regularly passed back and forth from the outpatient to inpatient teams, then sometimes to the palliative care team, and then perhaps to a hospice team or, for those with the best outcome, transitioned to a survivorship team. While all these practitioners are kind and competent, they are not a constant.

When I am covering our inpatient service, I do not know the detailed medical history of the majority of patients who have been cared for by my colleagues. Can I seriously be expected to know their complex oncologic and other medical issues, let alone their psychosocial needs, in any appropriate depth when I walk in on a Monday to start the week covering 16 new patients?

I can be empathetic and do my best to communicate with their outpatient physician, but both emotionally and medically, it is never the same as being cared for by someone one has known and trusted throughout one's disease trajectory.

Our relationship with the house staff is also fragmenting. We used to spend a month at a time as teaching attending, giving us a chance to get to know our students, interns, and residents. This has now been reduced to a week, and with our house staff rotating on an every 2 week schedule, we may work with a resident or intern for just a couple of days before one of us rotates off service. Furthermore, they spend much of teaching rounds staring into their smart phones and computer screens feverishly trying to complete their electronic workload.

As practices have become larger and medical teams more complex, care has become less personal and often less efficient. If the patient calls with an issue or sends a message, it is notclear to them, and often to us, who will be assuming responsibility for their concern. Should it be directed to my administrative assistant, our triage nurse, the nurse navigator, the palliative care nurse, my nurse practitioner, an off-site call center nurse, or myself? The inbox proliferates; the toss-up for ownership of the message begins; six people now read what used to be handled by one or two.

While I was an initial enthusiast for the early integration of palliative care alongside primary cancer care, I now also fear that it has further removed us from some of our most important interactions and deepest responsibilities. The inpatient oncologist used to be the one to provide symptomatic and supportive care and run the family meetings. Our house staff now routinely consults palliative care for even the simplest pain management issues, and we increasingly outsource goals of care and other serious discussions to our palliative care teams, who do not have a longstanding relationship with the patient or their family nor a complete understanding of their disease trajectory and past and future treatment options. Nor do I if it is not my patient and I am just the covering attending of the week. Too often it seems that palliative care has replaced us in some of the roles that used to be integral to our practice as oncologists, and we seem to have eagerly stepped back from some of these responsibilities.

Our interactions with our colleagues have also fragmented. Mostly gone are the days when we would sit down in the hospital cafeteria with other physicians from other specialties for coffee or for lunch after grand rounds. And the days when we would review films with our radiologists or slides with our pathologists are mostly long gone. Our tumor boards provide some interaction, but since the pandemic, these tend to be virtual and less intimate. I mourn the loss of our sense of a hospital community.

There have been some definite benefits to the fragmentation of care, which is why it has evolved and why we have accepted the bargain. As we increasingly subspecialize, we can get better and more focused on what we do which helps us cope with the explosion of data and new information across every area in our discipline. Some of us can devote more quality time to research, and it has also made our professional lives easier in some ways. How nice not to have to trek to the hospital to see very sick inpatients every day, but rather just a few weeks a year. How much easier to have someone else take charge of difficult end-of-life discussions.

There is no point in bemoaning the loss of the old ways of more personalized care, as there is no going back. The current generations of physicians will not feel this loss of inpatient/outpatient continuity having grown up in an already changed environment, just as they will never have known a world before the electronic medical record. Patients have also accepted our absence from their bedside with less resistance than I would have expected, perhaps knowing from the rest of their care experience how depersonalized it has become—not that they have had much say in the matter.

The changes in the delivery of health care will likely accelerate as we enter the medical metaverse and how we will navigate artificial intelligence while maintaining our emotional intelligence remains to be seen. The continued emphasis on increased efficiency and throughput of physician efforts—structuring medicine as a fragmented assembly line—runs counter to what is so meaningful to the physician-patient relationship—a function of time spent developing personal connections.

As we continue our efforts to keep up to date with the rapid expansion of medical knowledge in our field, we also need to make equivalent efforts to maintain our personal and emotional connections with patients. As we have less frequent direct contact due to so much fragmentation of care, we need to make the time we do have with them more impactful. And sometimes that means going over to the hospital to see Michael after a long office day, although you are not on service. It is the right, human thing to do, and still gratifying—for all of us.

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. Lydia Schapira, Associate Editor for Art of Oncology and a Professor of Medicine at Stanford University. Today we are joined by Dr. David Mintzer, Chief of Hematology and Medical Oncology at the Abramson Cancer Center of Pennsylvania Hospital. In this episode, we will be discussing his Art of Oncology article, "'But Where's My Doctor?': The Increasing and Relentless Fragmentation of Oncology Care."

At the time of this recording, our guest has no disclosures.

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

Dr. David Mintzer: Thank you for the invitation, Lidia.

Dr. Lidia Schapira: It's a pleasure to have you. I'd like to start these conversations by asking our authors if they have any books they want to recommend to listeners or if they're currently enjoying anything we should all know about.

Dr. David Mintzer: Well, I just finished David Sedaris's most recent book, which is a series of essays. I get a big kick out of him. I think I often mesh with his sense of humor and a little bit of cynicism, a lot of truth, but heartfelt and always amusing.

Dr. Lidia Schapira: I love his work. Thank you. That's a great recommendation, especially for the summer.

So let's dive into your essay and your perspective, which is really such an important topic for us. You talk about the fragmentation of care and how it's impacted our practice, our relationships, and even our joy in the work that we do. Can you talk a little bit about your feelings about this?

Dr. David Mintzer: Certainly. So I've been practicing medical oncology for a long time, about 40 years, so I've seen a lot of change. Favorably, most of that change is certainly in the good sense. We have so much more to offer our patients in terms of therapies that are more numerous, more effective, and less toxic. But there's been a price, I guess, to pay with those changes. We've all become more subspecialized, and the care has increasingly fragmented. And I was stimulated to write this essay because I've been disturbed to some degree by some of the changes. I think they are inevitable. I didn't want to write a piece just about how far I had to walk to school every day, uphill both ways, and complain. But I got a sense that others might have shared these observations and feelings, and I just kind of wanted to get them down.

Dr. Lidia Schapira: One of the things that you said that really resonated with me is when you talk about patients being at their most vulnerable and at their sickest and most frightened when they're hospitalized, and that's when they need us. And what you say here, what I'm interpreting that you're saying, is that by not showing up at bedside, in a way, we're abandoning them. And that is something that feels terrible to us as well, those of us who really value that presence and that relationship. Can you talk a little bit about how you're dealing with that and how you see your colleagues dealing with that?

Dr. David Mintzer: Well, it's a bit of a Catch-22. Yes. I think a lot of this is driven by guilt, by not being there for patients that we cared for sometimes for many years and know well. And although this happened in university hospitals a long time ago, in our hospital it was relatively recent, that it was recommended in part for house staff accreditation regulations to have only one attending on service at a time, which is understandable so as not to confuse the house staff.

But in doing so, we're not there for our patients every day. And so you're kind of torn between running over to the hospital after a long day when you're exhausted and seeing your patients and fulfilling what feels like some responsibility, and also feeling that this is no longer my role, this is no longer the way medicine is practiced. It's not efficient. I don't get paid if I go over, someone else is collecting the RVUs. And in addition to that, the concern that the patients may not be getting not just the optimal emotional care, but even the medical issues. Certainly, the doctors covering are good and do their best, but they don't know these patients. They don't know their whole history, they don't know their complications in the past. That's the trade-off we make.

Dr. Lidia Schapira: Let's talk a little bit about those relationships that we invest in so heavily in oncology. Oncology is different than many other fields and we've always valued the time we spend with patients and forming those relationships. Can you talk a little bit about how you see those relationships threatened when you as the oncologist and the person who's given them guidance for the entire trajectory of their illness can't be present just when they're at their sickest and most vulnerable?

Dr. David Mintzer: So care of cancer patients certainly takes a village and we have tremendous support with so many different practitioners, including our nurse practitioners, our palliative care nurse practitioners, palliative care attendings, nurse navigators. But as we introduce all of these people, we actually have less direct contact time with patients. We're less likely to be the ones to call them on the phone or even answer their email. And one of the great things about practicing oncology is not just the science and what we can do for patients medically, but these bonds and relationships we form. It's been chipped away at rather insidiously, but I think rather steadily over 20 years.

Medicine thinks it's so scientific and advanced and technological. But I always kind of reflect that we're probably 20 years behind every other industry, whether it's banking or going to the supermarket or the clothing store or the hardware store. You used to go to your neighborhood pharmacist and you knew him and he would give you advice or your hardware store guy would give you some advice about how to fix something. So those industries lost their personal relationships a long time ago. We're really far behind them, but we're catching up. So now everything is done more remotely, more on the phone, and as I said, there's less direct contact time, which I think we all miss. But we're different. We're different from going to your local banker or grocer or bookstore dealer.

This is medicine. These are important medical events for patients. They're very emotionally fraught, they're complicated. And so what may be adaptable to other industries, even though it seems to be being forced upon us, is not as adaptable in medicine. Now, maybe there is some respite for this. I saw recent data that telehealth is going down. We thought telehealth was going to be here to stay with COVID and everyone was going to love it. And yet it's interesting, although it may be partly regulatory and partly because of the end of the epidemic, but I get a sense that both physicians and patients are a little bit less interested in it. I think that shows that we might be a little bit different from other industries, but we'll see how that plays out.

Dr. Lidia Schapira: Absolutely. I couldn't agree with you more, but you talk about relationships also with trainees, for instance, that part of this fragmentation and these new schedules that we have also limit the contact you have with the house staff when you are assigned to be the doc on service. Perhaps you don't know all these patients very well, but you also bring up the fact that you don't get to know your trainees very well either because they're coming and going with different schedules. So what I took away was sort of a sense of loss, a bit of a lament that a lot of things are being lost in this super fragmentation. Can you address that a little bit, perhaps for our listeners?

Dr. David Mintzer: Yes, I think that's exactly right. So the fragmentation that I describe is not just in patient care, although that's probably the most important to all of us, but the fragmentation with kind of the extended family that was our hospital community. We've gone now to a nuclear family. So if we're a specialist in one particular area, we still have kind of a nuclear family. But my sense is we've lost that extended family, meeting people in the cafeteria after ground rounds, dealing with other subspecialists. And if you're only in the hospital a few weeks a year, you just have less contact, passing people in the hallway, meeting them at conferences, reviewing films, as I said, with radiologists, reviewing slides with pathologists. We're all too busy, we're all sitting in front of our computers at lunch, we're all doing conferences on the phone, driving home from work, but we have less time with each other. And that holds also true for students and residents who now rotate very quickly.

Dr. Lidia Schapira: Let's talk a little bit about one of the other points that you make in this very thoughtful essay, and that is that you say that you were an early enthusiast of the integration of PalCare, but now you find that certainly, the younger generation seems to be outsourcing symptom management and communication very early to PalCare. And as a result, perhaps from the patient's perspective, care becomes even more fragmented. And that's sort of a bit of a loss all around. We're not able to do some of the things that we enjoy too, in terms of family meetings and communication, but also everybody's becoming more deskilled. Talk a little bit about that.

Dr. David Mintzer: Yes, I was an early enthusiast for palliative care, and I still am an enthusiast, don't get me wrong. You can't criticize palliative care. It's like criticizing mom and apple pie. But the idea was, and still is, of course, that you would work in conjunction with a palliative care specialist, that they would be called in, say, on the very difficult cases, cases that needed particular expertise, or to spend more time. And certainly, that happens, and I have tremendous respect for my palliative care colleagues. But what's happened, as you note, is that we've kind of outsourced it. It's much easier to have someone else have that difficult conversation, particularly if you're just covering a patient that belongs to someone else, you're just seeing them for a few days during the week, you don't feel comfortable in doing so. And so I'm concerned that we've abdicated our responsibility in many of these important discussions and left it to the palliative care team who, by the way, are overwhelmed because there aren't enough of them now that they are getting all these consults for almost everything.

We should, as oncologists, still be able to run the meetings, to refer patients to hospice, to discuss goals of care. But as we all become more specialized, as we become busier, we have less time and we've built this metaphorical moat between our offices and the hospital, I find that we're just doing it less and less, and I feel some guilt about that and also some loss.

Dr. Lidia Schapira: David, you say in your essay, we have accepted the bargain. What I hear from you today and what I read and inferred in reading the essay when it came to us, is that there are feelings of guilt, there's less joy, there's feelings that somehow this bargain isn't so good for us after all, even though at some level it makes our work a little bit more simple and our hours perhaps a little bit more predictable. So can we think together a little bit about what lies ahead and how we get over this deep ditch that we seem to be in?

Dr. David Mintzer: Well, as you say, there's both benefit and loss involved with this and it does make our lives easier. If you're seeing relatively healthy outpatients month after month in the office, you get to feel oncology is not so bad and you can kind of put that two-week hospital rotation when everybody's in the ICU and having multiple unfixable problems and poor palliation behind you. So you can almost kind of go into denial. And it does make your quality of life easier to be able to just go to the office and go home most weeks of the year.

How are we going to deal with this going forward? I mean, we do have to make the effort. I don't think it's going to go back. I don't think writing this article is going to change the way medicine is structured. This is a more efficient way and in some ways, it may be safer and more high reliability, which are kind of the watchwords. So I'm worried. I don't know where it's going. I think it is going to be a little less personal. But my point is we have to be aware of it and in doing so make the time we have with patients more impactful, be a little bit more aware of our need to support them. Maybe if you're not at the hospital every day, go over once or twice a week, or certainly when there's a big change in event.

Dr. Lidia Schapira: Do you think we could use technology to sort of stay in touch and pay a social visit via FaceTime? Or remain connected to our patients, even if it is in a social function, but somehow, for their sake and for ours, remain connected when they're in hospice when they're hospitalized. But we're not the attending of the month.

Dr. David Mintzer: Certainly, the way we communicate has changed. I remember being a young attending and I was working at a small community hospital, and one of the surgical attendings would just call their patient on the weekend on the phone, but wouldn't bother to come in. And I thought, my gosh, that's terrible. What kind of impersonal, awful medical care is that? But indeed, now, calling or more likely, texting, communicating, emailing with patients may work.

What's coming with virtual or augmented reality or whether EPIC can eventually just plant a chip in our brain and we can all be online all the time, I don't know. But yes, any type of communication helps. I've often said that there's nothing like an unsolicited phone call to a patient to encourage them. Just, "Hey, you didn't call me, but I'm calling you. I was thinking about you. How are you doing?" So, yes, staying in touch by whatever means, I think can be greatly beneficial and mean a lot to the patient, even if it's a brief text or phone call.

Dr. Lidia Schapira: Yeah, even encouraging your trainees if you have residents or fellows working with you to go with you to that unsolicited visit or participate in that, I think that sort of would model the kind of behavior that we would want if our loved one is the patient, right?

Dr. David Mintzer: For sure.

Dr. Lidia Schapira: And that's always a good question because what we hear from patients is how much they value and love their oncologists when there is a strong connection. So let's perhaps finish the conversation by going back to Michael, your patient. How did you and Michael resolve this?

Dr. David Mintzer: Honestly, we haven't resolved it. So when he's in the hospital, he's now cared for by whoever's on service at the time. Fortunately, he hasn't been in the hospital lately, but I will make an effort to go over and stay in touch with him.

Dr. Lidia Schapira: I'm sure Michael would appreciate your presence.

Are there any other thoughts that you would like to convey to our listeners or readers? We have dealt with some of these futuristic issues in Art of Oncology before, including one essay I remember was published years ago where there was sort of this very impersonal imagining of what it would be like for an oncology patient to basically be seen by a series of robots along the chain without this human connection. And it was really terrifying to read. So thank you for reminding us about what is lost for us as well as what is lost for patients, something that we all need to go back and revisit, I think, as we think about the future. Any final thoughts, David, for listeners?

Dr. David Mintzer: So as a physician who's getting close to the end of their career, I don't want to come off as just protesting against change. We need change. You know, change is crucial, but I think it's not really been clear to a lot of people how much this has been eroded over time - that our direct contact and the fragmentation has impacted us and our patients and other caregivers. And this separation between inpatient and outpatient, I think, is becoming steeper. Our palliative care nurses used to go over to the hospital and see the inpatients as well as the outpatients, or our physical therapists, or our nutritionists. Now everyone is divided. I still think it's a great job. I love caring for patients. I love the teams that I work with. And as medicine gets better, though, we just have to be on guard to stay in touch with our patients and our feelings.

Dr. Lidia Schapira: I really appreciate your perspective. Thank you so much for sharing it with us.

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 the ASCO Shows at asco.org/podcasts.

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Show Notes:

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Guest Bio:

Dr. David Mintzer is a Chief of Hematology and Medical Oncology at the Abramson Cancer Center of Pennsylvania Hospital.

Additional Reading:

Ars Brevis, by Dr. George Sotos