Integrating Goals-of-Care Discussions in Oncology Practice

Dale Shepard, MD, PhD:

Cancer Advances, a Cleveland Clinic podcast for medical professionals, exploring the latest innovative research and clinical advances in the field of oncology. Thank you for joining us for another episode of Cancer Advances. I'm your host, Dr. Dale Shepard, a medical oncologist and Co-Director of the Sarcoma Program at Cleveland Clinic. Today, I'm happy to be joined by Dr. Natalie Jacobowski, associate staff of the Palliative and Supportive Care Department and a member of the psycho-oncology team. She's here today to talk about end-of-life discussions. Welcome.

Natalie Jacobowski, MD:

Thank you. Thank you for having me.

Dale Shepard, MD, PhD:

Absolutely. So give us a little bit of an idea, you gave titles, but what do you do here at Cleveland Clinic?

Natalie Jacobowski, MD:

So I am a new member to your team here at the clinic in the last few months and I work in the Palliative and Supportive Care Department, working as I am trained in adult psychiatry, child psychiatry and palliative care. My job is working in psychiatry with young people with cancer, especially the expertise in the younger end of that spectrum, given my training. So we're working on adding to the two existing psycho-oncologists and providing care for some of those younger patients addressing their needs and getting to integrate with palliative care and the other teams.

Dale Shepard, MD, PhD:

Excellent. And so welcome. We appreciate having you here.

Natalie Jacobowski, MD:

Thank you.

Dale Shepard, MD, PhD:

So, I guess if we're going to talk about end-of-life discussions, let's start really general and a lot of different people might be listening in different backgrounds. I think it's really important to think about when someone says end of life discussion, what does that mean?

Natalie Jacobowski, MD:

I think with that, I think it's also important to distinguish. We sometimes use end of life discussion in a lump way for any of these discussions around goals of care. I was like, I like to really talk about it as goals of care. End of life is certainly talking about, I think about imminent end of life, talking about some of that symptom management, talking about some of the goals around end of life. But I also think if we think about it as end of life, it limits us from thinking about when earlier in treatment it might be important to talk about some of these themes of what's important to a treatment to a patient, risks, benefits, that goals of care is not so intimidating to think about as introducing end of life when you might also still be doing an attempt at life prolonging therapy.

Dale Shepard, MD, PhD:

All right, makes sense. And we'll kind of flesh that out. I guess you mentioned goals of care. I guess it's a peeve of mine. People use that as a euphemism for hospice. And my goals of care is are we going to shrink your tumor and treat your symptoms and make you live longer? And people use goals of care for hospice.

Natalie Jacobowski, MD:

I think that's such a good point because these terms often get so linked with hospice, which is a wonderful resource at end of life. But I think goals of care, if I take what you just said is your goals are, can I help you shrink your tumor and live longer? And sometimes the treatment makes a lot of sense because you have a good chance of doing that balancing the toxicity. Then there's the times where maybe it's like a fifty-fifty balance and it might be helpful for the patient to be able to give some input. And then there's those times where that chance of your success is lower and that's when those goals of care become important.

Because for some patients, it might be important to say, "Dr. Shepherd, I want you to try to shrink my tumor no matter what. "Someone else might say, and many of them might say, "I want to make that decision knowing if you say, I think this has a really good chance of working, so I'm sorry you're going to have to go through some lousy things." Or if you say, "It has a chance of working and it also might cause you some added complications and not work as well as I want it to. So I'd like to talk with you about that part so that you're making an informed decision and I'm making sure that we are all on the same page and I'm not hiding anything from you."

Dale Shepard, MD, PhD:

Yeah. The language is really important. And so as we also talk about this topic, oftentimes there's the other things that get thrown in are DNR status and advanced directives and things like that.

Natalie Jacobowski, MD:

Absolutely. And I think those things are especially, I was like, I think they're very stigmatizing in a way for us in medicine and stigmatizing for patients because I think all of those groups all kind of associate it with more imminent end of life. And I think especially when I work with younger patients with cancer and having had more of a pediatric bent and young adults is, and even for other adults, it's hard to make a definite statement around some of those things is sometimes I don't want you to do resuscitation if you think I'm going to die anyway, but if I got pneumonia that you think I could treat and then I could live for a while, maybe I do want you to put in a breathing tube and get me through that. And so I also think that breaking down some of this earlier than just making it those black and whites helps work you towards a point when maybe you do need to make it more black and white because the risk benefit is different.

Dale Shepard, MD, PhD:

Or even sometimes the efficacy numbers, like I can make you live a year and a half longer. And they'll say, "But I'm only 23. That takes me to 25."

Natalie Jacobowski, MD:

Yes.

Dale Shepard, MD, PhD:

So that whole dynamic changes.

Natalie Jacobowski, MD:

It absolutely does shift and become a lot harder when you're looking at that of, "I'm only getting to 25." And I think these topics are hard for all of us to talk about because we're all human beings. It's hard to face young people with disease we can't fully treat or offering my efficacy is probably a year and a half. And I think in those spaces there's also a variation of when patients are first starting treatment, when they're often really wanting to see what can I do because I want to get that extra year and a half, I want a chance for more science to happen. And as you continue down the line of, what is my efficacy and what are the consequences of this treatment? Are you going to have to spend a lot of time in the hospital? Are you going to have such neutropenia that you can't do much, you're going to be in with neutropenic fever?

And is that trade off that the patient says, "Yes, I want that," or does the patient say, "Actually, I have a young family and I want to spend time with them. Can we talk about where different treatments balance?"

Dale Shepard, MD, PhD:

Yeah. You mentioned before the stigma attached to some of these discussions. We try to help people and we feel hopeless sometimes. But what do you think drives the discomfort more than anything else?

Natalie Jacobowski, MD:

I think honestly, without being facetious, I want to be like, "Because we're human." But I think it is also because we are all human. I also think for us in medicine on the side of the physicians, the medical providers is very few people in medicine go into medicine wanting to embrace the limits of medical science and the limits of the human body, except for maybe those of us who pick palliative care who say we're going to help support people through those realities. And as oncologists, I think it's extra hard because the treatments you give people to help them with their disease are not easy. They are going through something difficult and so you also are fighting alongside them in that process. I think we all have a human tendency to not want to miss something, feel like we didn't give everyone every chance that they could have and it's hard on us. And for patients, it's hard to want to bring up these topics with their doctors and to know what's kind of safe to talk about.

Dale Shepard, MD, PhD:

So, it sounds like, I guess from the perspective as a physician talking to a patient, there's a need for us to recognize when we need to bring it up and how to do that. And there's a need for us to recognize when patients need to talk about those things and an awareness there. So any tips? How do you suggest people, I don't know, for lack of better way to put it, get better at that?

Natalie Jacobowski, MD:

Absolutely. This is admittedly one of my favorite topics to talk about as a psychiatrist and palliative care doc. I love words and I think helping us all have better words is really helpful. And I think a few different tips I think about is you can get into it part on I think one reality in cancer, the softest entry to just see what interests are there is we all know there is a fight, survive, warrior mentality of cancer. Sometimes just being able to say to patients of, "We know this exists. And my other patients have told me it's sometimes hard to talk about what's more difficult for them, what they worry about. So I want to take a moment to ask you what other things are on your mind besides how tough you've been getting through all of this." That gives you the really open-ended approach just to start to explore, see what comes up.

If there's worries that you have to want to start to bring up like, "I worry this treatment is not going to be as effective or I worry that your body's showing a really hard time tolerating this treatment." One approach I really have learned through palliative care that I have taken is asking patients, "May I share a worry or a thought that's on my mind?" It's great because you're asking permission. And almost never will someone want their doctor hiding something, right? I would not. It is then you can share, "I'm hoping for this and I worry about this and I want to tell you because I want to make sure I'm being honest with you and I'm not having worries that I'm not sharing with you."

Dale Shepard, MD, PhD:

Makes sense.

Natalie Jacobowski, MD:

It's very human. I think if we break it down to just the human aspect of not worrying alone, and it just puts it out there. And if the patient really pushes it off at that visit, okay, you got it out there. Or maybe the patient engages and says, "I actually have worried about that too."

Dale Shepard, MD, PhD:

Sometimes you have patients who come in and they'll say, "I want to know how long am I going to live?" Very direct things that as they ask, you just immediately can tell that they're asking, but once you tell them they may have really wanted to know but they really didn't want to know. How do you go through those waters of murkiness where they're asking, you want to give them an answer, but you're not quite sure they really want to hear what you have to say.

Natalie Jacobowski, MD:

That's a good one. You're hitting the real realities of being in those encounters. I think about with that is in asking the patient is, and you got me thinking aloud and responding to it, is being able to say perhaps you don't give them your most concrete information to be like, "Here are your stats." But patients I think also want to know, here's where my cancer, what am I looking at that I'm going to survive this? Am I looking that I have a couple years because that might impact what I'm planning in my life. So potentially, I think one language we use in palliative care is sometimes talking about things on prognosis in is it days to weeks, weeks to months, months to years is maybe giving a range of in average, your cancer has X frame of typical survival. Every person is different and you can take that to also say to the patient, "As you're asking me that, I like to ask if you want to know as we treat you, I'll also have some better ideas of how you're responding what's happening.

Are you the kind of person who wants me to definitely be giving you those updates when it's coming into my head?" Some people find that stresses them out a lot more and I need to give you the big updates, but I also want you to know that you can trust me to tell you if things are changing, because the truth is people trust their doctors.

Dale Shepard, MD, PhD:

Yeah, just sometimes you come across these cases where they ask something they said they want to know, and when they know that it's clear that they wanted to know, and then sometimes it's clear that they didn't really want to know.

Natalie Jacobowski, MD:

Yes. And I think that's the part I hedged on and thinking about it a little bit is giving an answer in a gentle starting way because I think to your point is sometimes they want to know, but then the shock of actually knowing really then they react and say, "Whoa, that was a lot.

Dale Shepard, MD, PhD: So, we're just going to talk about the pediatric side here in a second. I guess just in terms of in general, if we think about if I'm seeing a patient in a room, I'm sometimes also seeing their caregiver, someone that's helping them along the journey and very much in it with them.

Natalie Jacobowski, MD:

Of course.

Dale Shepard, MD, PhD:

And sometimes there seems to be differences in what people want to know. So clearly the patient's the patient, but the caregivers need to know a lot as well. So sometimes there seems to be a dichotomy in terms of how much people want to have these discussions of end of life care. What do you do in those situations? Do you have separate conversations? Do you do what's best fit for both? What do you do in those situations?

Natalie Jacobowski, MD:

You're answering my question for me. And I was like, I would say sometimes it might be having separately. And I think I particularly think about separate conversations, making sure the patient has a chance to talk about. And it can differ in which one is in which camp between a patient and their caregiver of who is more open to talking about it. And a couple of strategies I think of is the patient's feeling it in their body a lot of times when they know when something is not going well and they're not feeling well. So often they might have worries to voice and when I talk to caregivers and parents as you're leaning into this pediatric end, but whoever is the caregivers who maybe say, "I don't want to bring this up because I don't want them to worry." One thing I really like to emphasize is we don't want people to worry alone.

And so I'll ask, "Do you think that your loved one is noticing these changes? Do you think your loved one is worrying?" The answer is often yes. Are they telling anyone about it? The answer is often no, because we as human beings all protect each other. And then it often inspires maybe it would be beneficial to be able to talk so they're not worrying alone. And that's part of oncologists talking about this is you make it talk about able as opposed to, I worry alone and I don't want to tell my oncologist that I'm not a fighter because I am tough and I'm a fighter and my oncologist has worked so hard to help me. Patients have that same kind of element as we have on the medical side of saying we have to shift mode, but we know these thoughts can exist. And it differs for every human, of course, is how they process for every person.

But it's kind of one of my big tips on how to get family to talk about the elephant in the room is that concept of worrying alone.

Dale Shepard, MD, PhD:

When's the right time to start these conversations? So it seems like I'm guessing that most of the time these happen too late and sometimes you have these discussions. And the patient family, they look at each other like finally they brought it up. When's the right time?

Natalie Jacobowski, MD:

I think I was like, as a palliative care person, I want to be like, "You can talk about goals of care at any time." But I think it's really when you start to look at more risk of death from the disease or the treatment or a change in how you're responding. Perhaps I think for oncology, when you switch from maybe curative to life prolonging intent. And I think looking a little bit at the literature in the adolescent young adult space, parents have expressed really strongly and this is looking at that and I think extrapolates that they want to know when the treatment's no longer curative. Because I think it's really hard for us to have to say that because it's a terrible thing to have to tell people is that I can't cure your disease. But I think you can then frame that with what we were talking about earlier of this has good effect at being life prolonging.

Here's what this means for you or you know what this is actually going to be a more difficult journey and a more difficult process. So you start that conversation and it's not coming as a shock when you say, "We really have to talk about end of life and not doing additional treatments because your disease is worse and I'm worried I'm harming you by giving you these added treatments given what your disease status is."

Dale Shepard, MD, PhD:

Yeah. I will point out those are some of the more teachable moments and humbling moments when you do get that look like, "Why didn't you ask me about that earlier?"

Natalie Jacobowski, MD:

That is probably a really good point. And honestly, I was like, "I have no judgment towards any of my medical colleagues anywhere." And I even think about myself in palliative care of it is so hard to do that and in this dynamic, everyone's avoiding the elephant in the room. And so I have been with so many patients and families. And I also know the patients and families where it feels dangerous to bring this topic up. I think that's also where your palliative care colleagues and some of these other people can be really helpful because not every case has this beautiful example of, "Thank you for telling me this honest information so I can plan." Is that it can be really hard. And I think we've all had the times that's backfired on us that then makes us tentative. And I think reminding ourselves we are human trying to do the best at being human.

Dale Shepard, MD, PhD:

When you think about treating children, what are the unique challenges? How does having children, having parents, having again, that whole patient but patient being younger and maybe not as decisional, things like that, how does it change the dynamic? How do you approach that?

Natalie Jacobowski, MD:

So, I think it's obviously, I was like, that can be a whole long chat we could have on its own about the developmental range in kids. But I think is also the importance of no parent, and I think this applies into the young adults as well, even older adults whose parents might be involved, no one wants their child to die before them. That's not how it's supposed to work. And so I think in that balance is also, when I think about working with parents and kids, is developmentally thinking about how to keep them informed, helping parents learn how to talk about, are they worrying alone? I use this same model because there is no handbook on parenting. There is definitely no handbook on parenting when your child has a life-limiting illness. I use a lot of cursing when I talk to parents about this topic to say that this is a really lousy thing to have to do, and we're having a lousy talk about a lousy topic. And I want to help them be able to parent their child.

I think on the doctor end, I think with them, and I think for any patient, is we want to give them the ability to make the choice with the information is end of life goals of care is informed decision in the same way. I've had so many times patients have said like, "Well, Dr. So and-so said we could do the treatment. I assume that means it's a good idea." And I think we forget that sometimes, myself included in my own ways to say, when do we put it forward and when do we have the ability when we actually get to know things about a patient like, "I really, as my disease is getting worse, I want to stay out of the hospital." We can actually help them in an informed decision way that's a shared decision to say, "This treatment is an option. I'm not sure if it's going to get you that much benefit, but I do know it's going to come with these consequences.

And I don't recommend it for those reasons." And it's hard for us to say we don't recommend as hard as it is sometimes, but I was like, it gives the patient the peace of mind. And so I think with parents kind of translating over, and I know I'm giving you a long answer, but I think it's also thinking about that element of nobody wants to make the decision to let their child or loved one die. And so when we hit points where we actually say, "I don't think something's a good idea," we are actually really giving them something by not taking away that decisional burden.

Dale Shepard, MD, PhD:

Yeah. I mean, it's information they need to know to make the decisions that they need to make.

Natalie Jacobowski, MD:

Exactly. And I think the emotions of all this make it hard sometimes to get that out on the table, but that's the part probably when the patients are like, "Oh, thank goodness we're talking about it. Now I've got the info."

Dale Shepard, MD, PhD:

It's all part of what is necessary for overall care. These are going to continue to be hard discussions, but I appreciate you providing some insight along the way and anything you'd like to share helping providers navigate these difficult waters

Natalie Jacobowski, MD:

We're all human. We don't have to be perfect at it. Having our patients not worry alone, including when it's sharing our own worry about what's happening in their treatment, then makes these things talk-aboutable is that we help make the elephant in the room talk-aboutable.

Dale Shepard, MD, PhD:

Appreciate all your insights. That's fantastic. Thank you.

Natalie Jacobowski, MD:

My pleasure.

Dale Shepard, MD, PhD:

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