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Apr 9, 2020

Dr. Toby Campbell, a thoracic oncologist and chief of the Palliative Care program at the University of Wisconsin Carbone Cancer Center, reveals how the COVID-19 pandemic is impacting his work with seriously ill patients, and tackles the challenges of communicating with families forced to distance themselves from their loved ones.  Dr. Campbell also discusses the promise of telehealth palliative care as a way to get clinicians connecting with more patients and families in this health crisis and beyond. 



ASCO Daily News: Welcome to the ASCO Daily News Podcast. I'm Geraldine Carroll. In today's episode, I'm speaking with Dr. Toby Campbell, a thoracic oncologist at the University of Wisconsin Carbone Cancer Center and associate professor of medicine at the UW School of Medicine and Public Health. Dr. Campbell is also chief of the Palliative Care Program.


We're discussing how the COVID-19 pandemic is impacting his work with seriously ill patients who are infected with the disease and the challenges of communicating with families who are forced to distance themselves from their loved ones. Dr. Campbell will also discuss the promise of telehealth palliative care as a way to get clinicians connecting with more patients and families in this health crisis and beyond. Dr. Campbell, welcome to the ASCO Daily News Podcast.


Dr. Toby Campbell: Happy to do it, Geraldine.


ASCO Daily News: Dr. Campbell, do you have any conflicts of interest to disclose that are relevant to this podcast?


Dr. Toby Campbell: I do not.


ASCO Daily News: OK. So how are things going for you, Dr. Campbell, and your team at the Carbone Cancer Center?


Dr. Toby Campbell: It is a stressful time, Geraldine. I think the stress comes in a couple of forms. First is the stress related to the uncertainty of how bad this is going to be, how long it's going to take, and any number of things related to just the lack of assurance about what we're facing, each of our cancer centers individually. And also, this strange tension between the medical needs of our patients and families and this worry for your own well-being.


I think doctors and nurses and everyone who works in the health care system is accustomed to dealing with those worries on behalf of our patients and families. What is unusual and taking me some time to cope with, quite frankly, is the worry that I shared for myself, but also for my team-- for my other physician colleagues, for our nursing staff, for everyone. It's a strange time of tensions pulling you in many directions.


ASCO Daily News: Well, you wear many hats at the Carbone Cancer Center as a thoracic oncologist and chief of the Palliative Care Program. Many of your patients are seriously, seriously ill. So how do you navigate conversations with these patients who have been forced now by COVID-19 to make plans about their care?


Dr. Toby Campbell: I think that the most important consideration is the frame of reference that you provide to yourself. So one of the things that helps me the most is my frame is always I want to provide the best care possible. Now sometimes, that involves giving chemotherapy, and sometimes, that involves stopping chemotherapy and transitioning to end of life care with or without the support of hospice. But if my perspective is always what is in the best interest of my patient, then I can say things like, chemotherapy is the right tool to help me help you accomplish your goals and objectives, or hospice is the right tool at this point.


In the case of dealing with these potentially serious sequelae from the COVID-19 infection and the high risk that my patients in particular, as a thoracic oncologist and palliative care doctor, the particulars that they face, is that sometimes, the right tool is to take a break from chemotherapy, or to stop it altogether. And so one of the things that we've been navigating is how to bring that up.


And I think being able to start with my objective has always been to provide you with the best care possible. And then I usually introduce it as a question. I wonder if you've been thinking about or are worried about your risks related to this pandemic virus. Patients almost always say yes. I find that they are frequently sitting at home worried and scared, and grateful for the opportunity to talk about it with someone that knows them.


So then we have a little dialogue about their fears and their worries. And then I provide them with an opportunity to do a COVID-19-specific advanced care plan, which is something that is based on the Respecting Choices Program our advance care planning team is offering here. So then I just invite them to talk over the phone with an advance care planning specialist to complete a little bit more formal declaration of their preferences should they happen to develop this infection.


And almost all of the patients I've found this experience to be valuable and actually decrease their stress. I will admit that I have had a couple of patients for whom the sort of more detailed exploration of what they might do should they become infected as has caused them some increased anxiety. But most of my patients have found it beneficial and reduce their anxiety.


So I'd say while we're doing a number of things, one of them is offering this advanced care planning. Another is I'm really trying to think very clearly about which of my patients does it make the most sense to continue to give chemotherapy. And certainly, patients who are tolerating treatment well, for whom it's working, we have a discussion around their risks. But odds are, we're probably going to continue that therapy.


I think people who are later in later lines of therapy or who are on the more frail side, more risky side, I've been exploring with them whether or not it makes sense to take a break or to stop. If we stop, do we transition to end of life care? How are we going to handle that?


Another patient population that sometimes we're taking a break, actually, are those that are doing quite well that have metastatic disease with no evidence of progression. And so that's another patient population that it's reasonable to consider a treatment break in this current circumstance.


ASCO Daily News: Are there some difficult discussions that you've had with very ill patients who have had to confront the most difficult moments in their treatment right now, and the added threat that COVID-19 poses for them, and has therefore forced them to consider end of life options?


Dr. Toby Campbell: Yeah. Geraldine, unfortunately, some of those patients who are on the more frail side, who are later lines of therapy, the discussion that I've had with them is about whether or not we should stop. And stopping means acknowledging that we are no longer able to slow this down or attempt to slow down their cancer, which means that they are closer to the end of their life than they were.


And in some ways, that's exacerbated by the COVID-19 crisis. I think I was impacted dramatically by one of my patients who said when we talked about stopping her chemo, she's a lung cancer patient who was on, actually, fifth line chemotherapy, which is something that we don't do a whole lot. But she was handling it reasonably well, but was frail, and had pain, and certainly at high risk should she develop the infection.


And she said to me, so you mean this COVID-19 is going to kill me, even though it's not-- even though I'm not going to die from the virus? You know, that was a pretty poignant moment because I think that I suppose it's true, in a way. I think really, she's dying from lung cancer. But this is going to affect and alter the course of how things would normally go. It's strange and different for me. And her experience is obviously the only one that she's going to have.


And then I've had that conversation repeated many times. No one else has said something quite like that, but they've all in their own way acknowledged that the fact that this pandemic is happening is changing the way that we would normally approach it.


ASCO Daily News: Absolutely. Well, the field of palliative care has been exploring using telehealth for a few years now. Can you speak about telehealth palliative care and its benefits and challenges?


Dr. Toby Campbell: Sure. The field has often thought to itself, a lot of what we do in palliative care is conversational. And maybe we could do that over the phone. And there have been some really elegant research trials conducted by people like Marie Bakitas at the University of Alabama Birmingham and Jennifer Temel most recently at Mass General, as well as several others.


And it seems as though palliative care in certain circumstances can be provided over the phone. But not always. There are definitely examples. There recently was a story in the media about someone receiving bad news from a, quote, unquote, robot. Really, as I understand that story, it was a doctor who was remote who was talking to a patient over a video conference, but had to break bad news and had never met the patient.


So there are certainly circumstances where doing things over telehealth is really challenging. But there are many circumstances in which it works quite well. And I think this pandemic has offered us the opportunity to rapidly test, refine, and really implement telephone-based or videoconference-based platforms to reach our patients safely at their own homes. And my impression is that for palliative care, it can work quite well.


ASCO Daily News: Well, the COVID-19 pandemic has surely increased the practice of primary palliative care that oncologists and their staff are doing. Can you give us some good examples of good primary palliative care?


Dr. Toby Campbell: Sure. Let's start, Geraldine, by acknowledging that oncologists have a really difficult job. In the best of days, they have a really difficult job. They have to tell people news that they don't want to hear that's life-altering, that's crushing for patients and families, and sometimes, influences a family of for months, or years, or even decades, depending upon what happens. And I'm keenly aware that oncologists are aware of the challenge that they face in having to take care of sick people who are scared and worried at a really difficult and vulnerable time in their lives. And they do a great job of it.


And as a palliative care clinician, our job is to help. It is not to replace or threaten, but to provide another viewpoint. To provide help to our oncologist colleagues and to our patients and families. Many oncologists are doing both well. And I think the places where the where it's most clear that they're practicing primary palliative care is really any time when, as an oncologist, you ask yourself, what's wrong with this patient? OK, they have lung cancer.


What are my treatment options? All right. So I could use chemotherapy or radiation therapy or surgery, just generally speaking. Anytime you're saying to yourself, what's important to this particular person? What do they care about? Where are they trying to go? And then you devise a treatment plan that is customized to that particular person's values and goals, now you're practicing primary palliative care.


Anytime you're doing good symptom management along the way, primary palliative care. You're practicing shared decision-making. You are establishing rapport and building a relationship with the patient and their family. Primary palliative care. And so I think oncology clinics and oncology-- oncologists have lots of examples of practicing great oncology, which is, at the same time, primary palliative care.


ASCO Daily News: Dr. Campbell, do you feel this crisis is taking a toll on you?


Dr. Toby Campbell:  Geraldine, this has been really tough, actually, for me. I am normally a champion sleeper. But one of the reasons that I'm aware that this is causing more stress than perhaps I initially noticed is just that I'm not sleeping well. I find myself, as a manager, worried about my team.


I'm not worried about just myself, but I'm worried about my family. I'm worried about my team. I'm worried about their families. And so I feel as though I have kind of a magnified sense of burden. And so it has been really, really difficult. And that's not even to mention the worries that you have for your patients and their families.


So I've been trying to do a few things. I think we all have strategies that we've cultivated over the years that help us cope with the work that we do, and oncologists are certainly familiar with the things that they do to take care of themselves. I think this is the time, probably, to lean on the things that have worked for you in the past.


For me, that's writing. I'm someone who likes to journal. Sometimes take a piece from a journal entry all the way to something that perhaps, even, you publish. I am someone who enjoys bread-making. I find the process of raising the yeast and kneading the bread therapeutic for me personally. I'm not a great exerciser, but I am trying to exercise. And I switched to-- I walk to work routinely, which gets me at least some activity.


And then recently-- and this may seem a bit crass-- but I have found some value in cursing. Sometimes in my journal entries, sometimes with colleagues, occasionally with patients when the moment feels right. But actually, I've been reading about the literature on this.


And cursing, particularly certain kinds of words, like body humor words, for example, are safer spaces. But it actually really does, I feel like, help me vent a little bit when I'm feeling at wit's end. So those are some of the things, in addition to, of course, spending time with my family when I can, that help me.


ASCO Daily News: Well, I'm sure there are quite a few folks who are saying a few more curse words these days. Seriously, though, Dr. Campbell, I want to thank you very much for joining us today on this episode of the Daily News Podcast. I know your insights will be very, very valuable to our listeners. Do take care.


Dr. Toby Campbell: You're welcome. Happy to do it.


ASCO Daily News: And thank you to our listeners for joining us for this episode of the ASCO Daily News Podcast. Please take a moment to rate and review us on Apple Podcasts.


Disclaimer: 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.


COI Disclosure:

Dr. Toby Campbell

Consulting/Advisory Role: HERON

Other: Agrace Hospice Care