Cancer Topics – Delivering Serious News (Part 1)

In part one of this two-part ASCO Education Podcast episode, Drs. Stephen Berns (University of Vermont), Tyler Johnson (Stanford Medicine) and Katie Stowers (Oregon Health & Science University) chat candidly about what it takes to deliver serious news to people with cancer effectively and compassionately.

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Air Date: 2/16/22

 

TRANSCRIPT

Steve Burns (Dr. Burns):  Hello. My name is Steve Burns. And I am a Hospice and Palliative Care Specialist and Associate Professor of Medicine at the Larner College of Medicine in Vermont. I’m pleased to moderate this episode of the ASCO Education Podcast focused on clinician patient communication in the context of delivering serious news to patients and family.

I am joined Katie Stowers, a Hospice and Palliative Care Physician and Assistant Professor of Medicine at Oregon Health & Science University and Tyler Johnson, a Medical Oncologist and Clinical Assistant Professor of Medicine at Stanford University.

Well, this is a serious discussion on delivering difficult news to patients and families. It is an extremely important one that I’m glad to be having. Let’s first start with our question, what is bad news?

I’m delighted to answer the question first mostly because I have an issue with calling it bad news. It really comes down to some of the training that I had as a palliative care physician when one of my attending said, don’t assume it’s bad. And I remember an example that I had for one of my first couple of patients, where the patient, when we were explaining that she had metastatic cancer and that she was likely going to die from this illness, she said, “Oh my gosh. I’m so relieved because I’ve been looking for an answer for months.”

So what made me realize during that moment and also what my palliative care attending reminded me of is don’t assume. And this is consistent with a study that came out, I think, by Anthony Balkin like 2011 where they did a qualitative review of patients encounters with serious news and bad news. And patients actually gave feedback that said, “We don’t want the physicians to judge our news.”  Again, sort of reframing that, it’s better to call it serious news rather than bad news.

Dr. Tyler Johnson (Dr. Johnson):   I’ll build off of that and just say that I think it’s also important that we recognize that sometimes when we call something bad news, what that’s actually reflecting is what our experience is going to be or what we anticipate that our experience is potentially going to be, which is totally fair. It’s absolutely valid to say having to share this news is going to be a difficult part of my day. And therefore, I think of this as sharing bad news. In fact, I think that recognition is important and can lead to important reflection and even to self-compassion. We should be candid about the fact that this is a hard part of our jobs. I mean, who likes to share life-changing, sometimes devasting news with patients?  Nobody wants to do that. That’s never going to be a fun part of your day.

I think, though, that it is important to recognize that that’s a different question from how the news is going to land to the patient.  Sometimes those things will match up and sometimes they won’t. And it’s important for us to be circumspect and careful in the way that we think about both how the news is going to impact us and how the interaction is going to impact us and also how it’s going to impact the patient.

Dr. Burns:  I’ll move to the second question, which is what is the ideal circumstance or modality, in person or video call or telehealth, to deliver serious news to patients?

Dr. Katie Stowers (Dr. Stowers):  I was actually struck on reflecting on that question about the ideal modality. I think COVID has actually really changed the way that I think about that question. Pre-COVID, I would have said hands down, everybody sitting in the same room being able to reach out and touch someone or be able to see them. But COVID has actually changed that. The people who need to be there aren’t always able to be there because of hospital visiting restrictions. And being in the same room often means three layers of PPE between you and the people you’re trying to talk to when they can actually see your face.

I found some really meaningful encounters of delivering serious news that’s been able to happen virtually in a way that I think I would have really surprised about pre-pandemic. I just had a patient in clinic with me a couple weeks ago who we were sitting there face-to-face, but visitor restrictions in our cancer center still wish she couldn’t have anyone with her in the clinic.

And so we were sitting there together and she wanted information. She wanted to review information that her oncologist had given her about prognosis. And so we were going to start to talk about that, and immediately she became overwhelmed and well, let’s get my family on the phone. And I would really like somebody else to hear this information. And ultimately we realized after trying to get people on and not being able to contact them that actually the best way to do this was going to be a virtual visit where she was home with her sister, with her dog in her lap, her aunt in New Mexico and her uncle in Alaska were all able to come on. We were all able to share this information together. And it was this really lovely moment where she had all of the things that she needed, and it had nothing to do with being in clinic.

In fact, clinic brought a whole different set of stressors. And so I think the way I’ve looked at this really is different and it’s what does this person actually need? Do they need me to be able to physically touch them or do they need their support system? Do they need to be able to see my face without a mask? What is it that this individual needs? And I think that’s more of how I go in and approach thinking about the ideal circumstance now.

Dr. Johnson: Yeah. I think that there is a lot of truth to that and because we are so constrained and clinic often now.  The one thing that I will mention as a practicing oncologist that I have recognized is really important, though, if you’re going to try to leverage the advantages that can come with technology is that it’s really, really important to make sure that the patient is tuned in to the kind of conversation that you’re going to be having before you launch into a discussion where you’re going to be talking about serious news. Because what we have found is that often when people are coming to see us, it’s part of a multi-hour half day or even a full day. They come in and see us. Then they get their labs drawn. They go to the waiting room. Then they go to get their chemo. Then they have to sit for a minute and be monitored afterwards. And sometimes it can be six or seven or eight hours.

The reason I mentioned that is to say that what we have found is that many of our patients, for instance, are now having video visits with us, where we can tell them. They’re like in the car driving in to get their labs done. And they love that because they’re able to save an hour or two of time instead of sitting in our waiting room, they’re doing the visit in the car. But as wonderful as that is for efficiency for somebody who’s riding the chemo train, that’s not the place that you want to be having this kind of serious discussion.

And so I think that if you know that you’re going to be having a visit that is going to involve sharing serious news, it’s really important to say, “Hey, I just want to let you know that this is going to be a particularly important discussion. Can you make sure that you’re in a quiet place where you can really focus here and have whatever family members or friends or whatever, your support that you want there so that they’re keyed in a little bit?” Because if they’re in clinic, we talk about preparing the right space. It’s better to do this in a private room in the hospital than in an Emergency Department with 27 things going on you. So by the same token, I think we have to give them the opportunity to sort of prepare the environment to allow them to have the best experience.

Dr. Burns:  I agree with both you Katie and Tyler. I think about most of my work’s done in the inpatient setting and just thinking about even in the inpatient setting, making sure that even though a patient has their own private room, sometimes they don’t and they have a neighbor that they’re sharing it with and thinking about how do we create that privacy for them? How do we incorporate their loved ones, whether that’s actually using now a iPad that rolls in where you can now have a Zoom conference with their loved ones across the country or across the globe.

But the other piece is really thinking about not tacking it on to the end of your rounds, but really setting aside some time to do that. And that’s even physically having someone hold your pager, silencing your phone so that you can be present for that conversation, just like how Tyler described that in the outpatient setting.

Dr. Johnson: Yep. Totally agree.

Dr. Burns: Well, thinking about who should be involved in the conversations, do you discuss as a team, which member of the cancer care team will deliver bad news to the patient and family?

Dr. Johnson: I can maybe address this one first and then you guys can add on. I think I come at this with a slightly different perspective because I’m actually a practicing medical oncologist. I’m not a palliative care doctor. I actually think that there are important points to be made on two ends of a spectrum here. What I mean by that is that one thing that I is important is to recognize that there is more kinds of healthcare providers can be involved in these discussions than we sometimes may think.

So for instance, Manali Patel, who’s a health services researcher here at Stanford, has done a lot of really interesting work lately with lay health workers being able to help have the first parts of these discussions in terms of exploring the values and priorities and needs of the patients.  And basically what she’s shown is that while there was initially a lot of skepticism, how can a layperson be involved in those discussions. After some training, these people actually do wonderfully well. I think by the same token, there are many members of the healthcare team that can help with that part.

Having said that, I do think that there is also then a part of it that most patients appreciate coming from one of their primary healthcare workers. I think that as oncologists, we’re here talking to the American Society of Clinical Oncology audience, I think it’s important that oncologists recognize that there are certain things that patients really want to hear directly from you.

And I think that in particular, some of the harder things to say, like we really don’t have other meaningful treatment options left, that phrase I don’t think land in quite the same way if it comes anywhere but from the treating oncologist because there’s always going to be this thought in the back of the patient’s mind that maybe my oncologist has something else in line or I need to talk to them later or what have you.

I think that while on the one hand, we should broaden the spectrum of people who can be involved in these discussions, I do think on the other hand that it’s important to recognize that there are some parts of this that really are most effective when coming from the treating oncologist.

Dr. Burns:  Tyler, I think you hit on the importance of the relationship of the oncologist and the oncologist team with the patient and their loved ones. I often think of out this tide of care cartoon. I think it’s almost like a far side cartoon where it’s a physician who’s sharing news to a patient and says I have some really bad news. So I’m going to get someone else to say it for me. I often feel like, as a palliative care physician, I sometimes am thrown into the mix. Am I the one delivering this news? What I really enjoy is partnering with the oncologist and even joining together when we can or for me to check in with a patient after the news is delivered, just because of how important that relationship is between the patient and their oncologist.

The only other thing that I would add is I love having a team with me during those meetings. And so if I can in the outpatient center or inpatient setting, having a nurse or a social worker or a chaplain join me because sometimes I misstep and I say more than I should or I don’t notice emotion. And I think having the other interprofessional lens there to watch and observe can interrupt me, give some feedback in the moment and/or take a step back so that we make sure that patients understand on what’s going on.

Dr. Stowers: I think, Steve, the part that I love about delivering news with the team is all the things you said. And when I notice my own emotions or I feel stuck on what to say, there’s somebody there who can kick the ball and run with it for a bit so I’m able to catch back up.

I wanted to add on to something else that you were saying, Tyler, about this relationship between patient and oncologist. And I see that a lot where patients will come to me and they’re not ready to talk about things until they’ve heard it from the oncologist first. I just have got this morning this guy who got discharged from the hospital and hospice had been brought up in his visit, but he sees his oncologist on Friday and there was no way he was going there with me and how he’s able to talk to his oncologist rightly so.

I also see the flip side of it not too infrequently where the relationship that the patient has with their oncologist is they’re the gatekeepers to life prolonging treatments. And they see any discussion of worries or fears as a weakness that maybe will make it less likely for them to get those treatments. And so I also see that patient population where they see me as the place as a palliative care provider where they can talk about some of those things that they’re not ready to talk about with the oncologist. They need the oncologist to be positive treatment focused and they need another place that’s not the oncologist to talk about those things.

Dr. Burns:  Yeah, Katie, I just actually had a case like this last week where a patient says that she is really tired of the chemotherapy she was getting. She has a head and neck cancer, but she was afraid to bring it up with her oncologist because, she says, “I need to be brave in front of her.” And I just thought how interesting that was. And so every time she’s in the room with the oncologist, everything’s fine, everything’s great. And then when she’s speaking to me, she’s like not everything’s fine and not everything’s great. And so I just think that the illustration of, yes, it would be great as a team, sometimes when we individually approach it, people do feel comfortable saying something differently outside of their oncology visit.

Dr. Johnson: I think that one thing that this all gets to that I think is what all of us are saying, but it’s worth articulating is that, Steve alluded to that cartoon at the beginning of this part of the discussion. The sort of underlying message from that is this idea that we as medical oncologists involve palliative care doctors if we don’t know how to do something or we’re not interested in doing it. And of course there may be times when the patient is better off with a skilled palliative care doctor doing the conversation that maybe a less skilled oncologist doesn’t know how to do so well. But that’s certainly not the optimal outcome.

The optimal outcome is that there is teamwork and a partnership between medical oncology and palliative care. I think that teamwork creates a synergy where, because you’re right, that the patient may have one face that they put on for the oncologist and a different face that they put on for their palliative care doctor. And I know there are times when I can sense as the oncologist that there is something just below the surface that they’re not quite ready to bring up to me.

And sometimes in those cases, I will say at the end of the visit, “I think this would be a really good time to touch base with the palliative care team.” And what I’m really thinking is because there’s clearly something else you need to talk about that’s not going to come out right here. So I want it to come out when you get to meet with them. Then of course, especially in those kinds of cases, having a little bit of back channels communication after the visit with me so that I can prep the palliative care doctors and let them know that I feel that there is something else there to be addressed, I think is really important.

Dr. Burns:  One question to think about is how do we prepare? How do you prepare for delivering serious news? I think I will say that the first thing I like to do is do my biopsy of the situation. I know that’s quite medical to use as analogy, but I like to know who are the players? What is the prognosis? And what I need to do is do a really thorough check-in with the specialist. So oncologist or if there’s a radiation oncologist involved to check in with them and to actually check in with the patient about information preferences and/or who would like to be in the room or who they would want to be in the room. I think all of that helps prepare it.

I always use the analogy with my trainees, like a good, serious illness discussion or a good delivering of serious news is a lot of preparation, just like how we learn to put in central lines. A lot of it’s the prep and then the central line when you place it is pretty quick. And so I certainly think about delivering serious news in the same way.

Dr. Stowers: I think the part of preparing for serious news that we probably don’t think about as much is the part about preparing ourselves for giving this serious news. And Tyler, you alluded to that earlier on in the conversation of what am I bringing to this conversation? I, through a series of tough experiences when I was a new palliative care physician in a busy outpatient practice, really found myself losing the empathy that I really prided myself on having in my clinical encounters. And I walk in and be like looking at the clock, like tapping my foot as this person’s crying in front of me and like, holy smokes, what’s going on here? And I realized that I was not prepared to give this kind of news.

And so really started instituting before I knock on the door and go into the office or click the virtual visit now as it, I’m making sure how am I? Have I gone to the bathroom? Have I eaten? Am I hot? Am I cold? Like how does this patient make me feel. What are the emotions that I’m bringing up? What are the biases that I’m bringing to this about what outcomes do I really want from this conversation and doing this little mini-checklist of how am I and what am I bringing to this conversation has really helped me get a lot more centered before I walk into their room. And so I think that that should absolutely be on that checklist that we do as we’re preparing for these conversations.

Dr. Johnson: I’ll say two things building off of those great points. One is that I think, to Katie’s point, I think it’s important that we put a plug in here for a holistic evaluation of your own wellness as a doctor in the big picture perspective. And obviously, I have my own bags under my own eyes after the last two years of the pandemic. You can choose if I’m the pot or the kettle, but I recognize that I struggle with this just as much as anybody.  But it’s just to say that if you’re not eating well and you’re not sleeping well and you’re not getting some exercise and you’re not taking time for yourself and you don’t have a sense of self compassion, it’s very difficult to fake empathy. It’s very difficult to pretend to be present.

And if you try, it usually just doesn’t really work. I mean, you kind of either are present or you’re not. But the issue is that you can’t summon self-care in the moment that you need it. You can maybe try to do that for a couple of days. I think that largely is what burnout is. It’s trying to magically materialize self-care as if you can do that the moment before you walk into a room and that’s just not how the human psyche works. So that’s thing number one.

The other point that I would make is that, and I feel like this is one of those things that I just have to learn a thousand times over the course of being a clinician, because no matter how many times I learn it, then I forget it and it blows up in my face and I think, oh, well, yeah, I forgot that lesson again is how important it is that the first thing I do when I get in with a patient and I’m preparing to have one of these discussions is to talk with them about what they already understand about what’s going on. Because you have some patients who you’re surprised to find that you know that they’re on end of line chemotherapy and they have overwhelming disease burden, etc., and then you ask them what’s going on. And they say, “Well, I’m just really excited for the next chemo because doc, you said that the next chemo was going to be the one that was going to make the difference.” when of course you probably think you didn’t say that.

But the point is just to say, that’s very different than if you ask the patient and they say, “You know, Doc, I so much appreciate everything you’ve done. If I’m really honest, I kind of feel like I’m dying. I think that’s where I am.” Well, those are two totally different discussions. And if you come in assuming either of those things and it’s actually the other one, then you’re either going to waste a phenomenal amount of time or it’s just going to be a terrible encounter. And I’ve made mistakes on both ends of that spectrum, which just reemphasizes for me the importance of figuring out where the patient is before I start saying anything.

Dr. Burns:  And Tyler, I also think about the efficiency of these conversations. Often we are so worried it’s going to take so much time. And when you start with, what have you been told or what do you understand or what’s been going on with the big picture of your cancer, it does save time. So you don’t actually have to repeat from the top. And I will say I’ve also watched people still and I caught myself a couple times where we still ask, what do you understand? And then we still repeat the whole story.

And so I certainly encourage all of us to think like if they heard it, totally fine to move forward, but the other efficiency piece and I know all of us have been vital talk trained thinking about a headline in like a big picture. What is the big message? I always think about a headline is what is sort of the summary of the medical information and what is the impact on the future of this person’s health?   Knowing that we often are pretty good with the summary of the medical information but a little less good at the impact. I always find that that helps them better understand their big picture and be able to then share the same information with their loved ones. They could easily have that catchphrase or a two-liner that they can say, guess what? The oncologist has shared this with me. I think that’s so helpful when they’re thinking about their overall care and helps them inform their goals and priorities and helps us better understand their goals and priorities. 

That concludes part one of our conversation on delivering serious news. In part two, we will continue the conversation on how the care team can prepare for delivering serious news. Useful resources and more. Thank you so much to all of our listeners for tuning into this episode of the ASCO Education Podcast.

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