How to discuss stopping screening: Mara Schonberg

Eric: Welcome to the GeriPal Podcast. This is Eric Widera.

Alex: This is Alex Smith.

Eric: Alex, who do we have with us today?

Alex: We are delighted to welcome a friend, a colleague, an ePrognosis key team player. Mara Schonberg is associate professor of medicine at Beth Israel Deaconess Medical Center and Harvard Medical School. Welcome to the GeriPal Podcast, Mara.

Mara: Thank you so much. Glad to be here.

Eric: We’re going to be talking about discussing cancer treatments or, sorry, discussing cancer screening with older adults and also discussing prognosis with Mara Schonberg. But before, Mara, we get into that topic, do you have a song request for Alex?

Mara: I do, Closer to Fine by the Indigo Girls.

Eric: Can you tell me why?

Mara: Alex had asked me what’s my favorite song and that one came to my mind first, but I actually think it’s a pretty good fit for this. I first heard it in college and it’s just invigorating and singing it sort of always has a warmth and fun for me. But some of the lyrics, it’s really about finding your own truth, and something like the lesser I seek my source for some definitive, the closer I am to fine. If some of my research isn’t like this is exactly what you should do and not do this. It’s more about finding the right choice for you based on your preferences and values. And so all of my work has really been trying to help patients understand what matters to them or make decisions based on what is likely the realistic outcomes of a decision and try to explain it to them in a way that they can understand so that they can make the best choice for them. So, hopefully we all get closer to fine.

Alex: Love it.

Eric: Wonderful. Let’s hear it, Alex.

Alex: (singing)

Eric: I’m pretty sure Alex could have played that whole song multiple times.

Mara: It’s so good.

Alex: Easily. Easily. I think that was the second or third song that I learned in high school when I started playing guitar. Thank you for that, Mara.

Eric: You started guitar in high school?

Alex: Yeah, I started late. It was probably like between eighth grade and high school I started playing. It may have been just in my first year in high school. I wish I’d started earlier like my kids.

Eric: Mara, do you play any musical instruments?

Mara: I do not. I like art, but I did piano for a few years as a child, but, no, not my strength. But I love art. That’s probably my… Like drawing, painting, and more crafting now. Drawing and painting requires too much of my attention and my work requires too much of my attention. So crafting doesn’t require the same [inaudible 00:04:20].

Eric: What’s your last crafting project you did?

Mara: Well, I’ve always wanted to learn to sew with a sewing machine and I never had. And so the pandemic allowed me two years of time to actually learn how to do it. So now I can sew at the sewing machine and make bags. I have not made an outfit yet. I made a skirt for my daughter that, of course, she doesn’t like.

Eric: Oh, yeah. Well, this is not about crafting, although that would be a good podcast right there. This is about cancer screening in older adults. As a geriatrician and as a researcher, you could have chosen any subject to dive down into and you’ve been really leading this field. How did you get interested in this?

Mara: Yeah, definitely. So my mother’s a social worker and she did domestic violence counseling forever. And so I was very much reared as someone with a woman’s health perspective and such. So when I got to a residency and at that point I was in residency 1999 to 2002 and we were being taught to screen everyone no matter what. And I would have elderly women in my residency panel who I would be like… I was a math major and mathematically, it makes no sense to screen someone for something that is not going to affect them for years. The whole point of screening is to find something early that’s slow enough growing that you can make enough difference if you treat them early.

Mara: It made no sense to me that we were screening, yet if I tried to have this conversation with preceptors, it’s like, no, check box, screen. And so then I think another mentor-type person was like, “Well, why don’t you read everything on mammography screening?” And I did and I was in shock that there was a trial or two that were negative, that mammography screening was not effective. And then there was a lot of drama at that time about mammography screening throughout my entire residency. There’s like even the 40s whether we should screen them. There was a whole meta-analysis that felt like most of the randomized control trials in mammography screening were poorly done and were all biased.

Mara: These researchers, and I think it’s Denmark, did this meta-analysis of the two studies they thought were reasonable, a Canadian trial and one in Sweden, and then they found no benefit overall in their meta-analysis. They’ve been refuted that you can’t take out six studies you don’t like, that kind of thing. So the benefits have always been a little bit murky. So I felt as, from a women’s health perspective, it’s not good women’s health to tell people what to do if the data doesn’t support it. In here, there’s this issue that has been such an area of women’s health and identity, get your mammogram and avoid breast cancer death. You’re a better person. You’re doing better with women’s health if you get this mammogram. And as a analytical person and reading all the data, it didn’t support that. So I feel like better women’s health is trying to get women to understand what are the pros and cons and make a decision that makes sense to them.

Mara: And I think that’s probably for every age, but I came to fellowship at Harvard right after my residency at University of Chicago and I was told that it’s very political. You can’t start questioning mammography screening, as I had already kind of learned from the politics that are going on at that time. So maybe the oldest age group. And actually, at that point I wanted to study 75 plus and at that time, I was encouraged to just look at 80 plus. So that would be palatable to the community that I could look at, whether we were over-screening those 80 and older. So that’s how it got started.

Eric: What do we know about, I guess, the benefits of mammography screening in older adults, all older adults?

Mara: The foundation of the data come from these eight randomized control trials that… One was in the ’60s in New York and the other ones were done in Europe and a big study in Canada. Again, many, many years of meta analyses and looking at these trials, I would say, on average, the benefit is about 20% reduction, but most of the benefit is for women in their 60s if they do it. They get the most breast cancer and the most slow growing breast cancer. So you can find it early enough to make a difference. But that’s the sense. And so then a lot of people have used simulation modeling where they use the data from the trials, they use the data on incidents, or they use lots of different data to try to model all the different outcomes and basically, we become simulated and they make sure that the simulation outcomes match our population incidents of breast cancer and breast cancer death. And that’s another huge source of data and that’s the data that generally informs the USPSTF and other guidelines.

Eric: Do we have any data in the plus 75 as far as randomized controlled trials for mammography?

Mara: No. So none of the randomized controlled trials included women aged 75 and older. One, maybe sort of half of another included women 70 to 74. When you put them all together and some 70, there might be a trend towards benefit, but then overall, it’s nonsignificant at this point.

Eric: This kind of also parallels colon cancer screening. Is that right?

Mara: Yeah. There might be more data for colon cancer screening with the flbT than there is for more convincing in older adults, not for every age group.

Eric: Yeah. Now the guidelines used to say stop screening at 75.

Mara: So they’ve been fairly consistent. Actually, they were screening everyone age 40 and older one to two years around the time I was in residence. They went from what do we do and then in 1997-

Eric: But there was no cutoff?

Mara: Right.

Eric: They just screened.

Mara: Consider comorbidity was sort of the… That was actually what led to my first paper was the guidelines were saying screen everyone. No stopping except for considering comorbidity. That’s why I wanted to look at screening by life expectancy. Actually, the reason I knew even I’d say also developed a mortality index daily. The reason I knew I wanted to develop one with National Health Interview Survey data was because my first paper I looked in women 80 and older because, again, 75 plus was going to be too controversial receipt of screening in the past two years and it’s self-reported, but I didn’t have a validated instrument for assessing mortality or a 10-year mortality. We use this heuristic where we considered a patient’s age and their comorbidities and their function to try to get at who would be in the less than five-year life expectancy, the less than 10-year life expectancy, and the 10-year or more. But whatever journal I started with higher than JAGS dinged me because I didn’t have a validated mortality index.

Eric: There’s something higher than JAGS?

Mara: Or a larger impact. There’s nothing more… Probably wrong audience.

Eric: Disclosure of interest. Me and Alex are on the JAGS board.

Mara: They were wrong. They were crazy, that paper. We’re all researchers. We’ve all been around the block or have been around the block. Anyway, so as soon as NHIS came out with their data linked to the National Death Index, I was ready to go to make one because I knew that’s population based or public use data. And so somebody else would do it if I didn’t. So I was ready to go. I stopped whatever I was doing and did my prediction modeling.

Alex: Before Eric asked your question, I should note, quick plug, the Lee-Schonberg Combined Index. Mara mentioned Sei Lee has an index and she, as she just said, Mara has an index. We combine them on ePrognosis. So you can now enter the risk factors for both indices and get the results of both indices because there were many common elements to both indices. So it saves you the time. You get a twofer. And a little bit of a preview in the future, you might even get a threefer. Stay tuned.

Eric: So for breast cancer screening, from a prognosis standpoint, you really… What’s the lag time to benefit for breast cancer screening?

Mara: Yeah. So before Sei did a meta-analysis of five of the eight randomized control trials in mammography screening, the three others didn’t include women in their 50s. So he included the women who were 50 to 74 and he looked at how long it was before one in 1,000 women avoided breast cancer death as a result of screening. And he found that that was 10.7 years. So that’s where that concept of needing a 10-year life expectancy to benefit. Some had previously looked at just the trial data and saw that the survival curve separated around five to seven years. So the American College of Radiology still says, you need a life expectancy of a five to seven rather than the 10, but every other guideline uses the 10-year cutoff.

Eric: So 10 years to prevent one death from breast cancer.

Mara: Yeah.

Eric: That’s the lag time to benefit. Do you think most patients know that?

Mara: No.

Eric: So the question is, why not do it? What’s the harm of doing breast cancer screening?

Mara: Right. And here’s where breast cancer screening is a little different than colon cancer screening. Colon cancer screening, the harms are much more visual, palatable. They don’t like the prep and they can imagine a colonoscopy causing them perforation and that being bad and that the numbers are almost as similar as the chance of benefit. So that’s an easier one to do the benefits-harm kind of discussion. Mammography, the harms include false positives, or sometimes they say false alarms because patients sometimes understand that better. We found in diverse populations, the word scary, how to scare can also be a lingo that they understand. And then it’s quite high. If you’re screened every year for 10 years, it’s like close to 50% even in the oldest women will have a false alarm. And even-

Eric: Close to what percent?

Mara: It’s like 47% every year for 10 years.

Eric: Wow. So half will have a scare?

Mara: Yeah. That might be it. They might just need another repeat mammogram. Most women will say, I’m willing to get screened even if I have a scare or a false alarm. That doesn’t bother me so much. It doesn’t increase depression or overall anxiety. It might increase a little bit of breast anxiety, but then most people are more dedicated to mammography after. But so the real harm for breast cancer screening is really this concept of overdiagnosis, which is really challenging to understand both to clinicians and to patients. So like overdiagnosis is you have Maria in scenario A. She has a mammogram. Her breast cancer is found and then it’s treated and such and she lives to 85 and dies of heart disease.

Mara: And scenario B, Maria has her breast cancer. She never goes for screening. It’s never found and she dies at 85 of heart disease. And so for Maria, her breast cancer was overdiagnosed. It wouldn’t have ever caused her problems in her lifetime, but it’s really hard knowing if the patient in front of you has an overdiagnosed breast cancer. There’s some trials going on with a lot of overdiagnosis is driven by DCIS or ductal carcinoma in situ, a noninvasive form of breast cancer. So there’s more and more work on can we not treat those? And that’s not out yet in terms of what we should do. So like prostate cancer, at least we have some of the watchful leadings and reduces some of the harms of screening. If you know that there’s a group that you don’t treat even after they’re diagnosed, it causes anxiety, but you’re not causing them harms from treatment.

Mara: Breast cancer, we’re not as good at and people get a lot of treatment and there’s more and more in the world of breast cancer treatment of trying to reduce some of the interventions. There’s radiation keeps getting less and less and there are studies that you can avoid radiation if you have this stage one or even two small or low grade or sometimes even, whatever, higher grade two, but not in the nodes type of breast cancer, an ER-positive or HER2-negative. And more and more like some of those are finding that you can avoid endocrine therapy, but maybe you have surgery and radiation or surgery and endocrine therapy. So I’m actually interested in also trying to help women who’ve been diagnosed figure out what to do too.

Eric: So let’s say there’s the Mara Schonberg guidelines for breast cancer screening in older adults. What would be the recommendations for breast cancer screening in older adults per these guidelines?

Mara: The ACP came out with guidelines that are probably the most data-driven in terms of on a population level that at 75 plus don’t screen if they have… If they’re low or average risk, don’t screen. And if they’re high risk, you can still consider screening.

Eric: So don’t screen at all. After 75, stop screening.

Mara: We don’t like age-based and we like more life expectancy based, but there’s more and more suggesting it might take 20 years to benefit from screening and that it is one in a thousand even for 50 to 74. We don’t have data for 75 plus. So I would say if you’re trying to make easy guidelines, it probably is reasonable to stop screening most women at 75 and not see much.

Eric: What if they’re playing golf, tennis every day, highly functional, do you think that they have more than 10 years to live?

Mara: Yeah. That’s where it gets into preference driven. And I’ve done all, again, like my whole woman’s health. I know the data and based on the data, I think that’s the ACP’s guidelines where they say, you don’t screen anyone with less than 10-year life expectancy regardless of age or 75 plus who are at lower average risk. I think they’re reasonable. At the same time, it’s also reasonable for someone who is in such good health and who feels that that small chance of benefit, very, very small chance of benefit, is worth it to them, then I’m comfortable with that decision. Overdiagnosis leads to more treatment and more outcomes and that leads to more harm, but it might be reasonable. And that’s why I want women to have an informed decision.

Eric: So how do you actually convey the risk then? Because it’s really confusing. I think most people don’t understand like the number needed to treat is 1,000 10 years if that’s the number for colonoscopy and breast cancer. How do you have that discussion? How do you talk about the risks and the benefits, even when there’s a lot of controversy, what those are?

Mara: No. Great. So we have done a few qualitative studies where we’ve worked with a bunch of primary care clinicians, geriatricians included and adults 76 and older to try to get language to have these kind of conversations. And of course, I’ve also developed a decisioning, but I’ll lead into that with this. So we’ve come up with these quick scripts. And we’ve learned from talking to patients and clinicians, for some women, it doesn’t have to be that long of a discussion. They have so much going on. They were hospitalized but something comes up about mammography screening and it can be really quick. Something like we have a lot going on. It takes a long time to benefit from screening. There’s harms and I recommend we transition away from mammography, but it’s your decision. What are your thoughts?

Mara: There’s some who will need a little bit more, even though they have a lot of other health problems going on and it’s clear they don’t have 10-year life expectancy and you can lead with the guidelines recommended. I talk to women 75 and older or something like it’s my job as your PCP to recommend tests that I think will lead to more good than to harm. And then explain that there’s a delay in benefiting from mammography and we think it takes about 10 years before you have a very small chance of benefiting. Meanwhile, there is risk to the procedure. Some women are diagnosed with breast cancers that otherwise wouldn’t have caused them harm and treatment can be hard. What are your thoughts? And some who are more like better health who don’t have all these health problems going on and it’s clear. It is more of a shared decision.

Mara: I would add it’s important away what we know about the benefits and harms of screening and make a decision about what to do together. Let me get to the right script. There is a delay in benefiting and we think that on average, it takes 10 years before one in a thousand women. Meanwhile, there’s harms to screening. Over 10 years, 200 will experience a false alarm. Some will have to have a benign breast biopsy. It can be stressful. And about 13 out of a thousand will be overdiagnosed. And this means that they’re diagnosed with a breast cancer that otherwise wouldn’t have caused them problems and they go through treatment that in some ways would’ve been unnecessary and that can be hard. So how do you feel about the chance of benefit versus the chance of harm? And that’s really fast and I don’t have a lot of time in my visit and there’s all this conversation about primary care and I’m a primary care doctor.

Eric: There’s a lot of numbers and there’s a lot of stuff in that statement.

Mara: Exactly. So then I’m going to say like, I know I talked about this really quickly. Here’s my decision. I’ll go to ePrognosis and I print it and we don’t have color printers. So if they’re really computer savvy, I can tell them where the website is, but often I’m printing it. And why don’t you read this and let me know what you think. And they can do it. They read it and they get it. And one woman recently was like, “Oh, my sister had breast cancer when she was 80. I think I want to get screened.” And then the next year she was like, “No, I’m stopping.” There was this idea that you need to sort of wean or prime them and maybe conversations before 75, then around 75, we’re going to start thinking about whether to stop. As a good clinician, I want to share with them what I think is… I had another patient who found it on the New York Times and said her score was three. So she knew she was in good health and she wanted to get screened. I’m like, “Okay.”

Eric: So just to clarify for the audience, you have two decision aids from mammography on ePrognosis. So you can actually just go to ePrognosis, just Google that and you click on decision aids and you can pull them up. You can pull up two decision aids.

Alex: Decision tools tab, decision aids.

Eric: You have one for 75 to 84 year olds and one for 85 and older. Is that right?

Mara: Yeah. The kind of a paper-based tool versus something that’s web-based it’s hard to tailor. So the only way to tailor is making two different tools. We also have it in Spanish and English. And then we also have even a lower health literacy version on there, which I can talk more about.

Eric: Besides your anecdotal evidence that you’ve had people use it, do you have any other data that these decision aids work?

Mara: Yes. I completed a whole very pain seeking randomized control trial as a cluster randomized trial. We randomized PCPs from Massachusetts and from North Carolina. We wanted it to be multi-site. It was my first R1. So I didn’t want to be too crazy, but we wanted to go somewhere that was very different than Massachusetts to get a sense of how this decision aid would work in different populations. And so we recruited 546 women and they were from 137 different PCPs. And we randomized people by their PCP so that all patients per PCP got the same tool because we felt like if a patient brought it to their PCP, that might change the PCP’s counseling.

Mara: And we gave them the tool before a visit and my RA sat there and made sure they read it. They didn’t read it to them, but they just was like someone’s watching you, so you’re going to read it. Our goal was not how to get it to them. It was if they got it, would it work? And so then they saw their PCP. They didn’t have to take mammography screening. We did email PCPs that they would be coming in early for the study. We sent PCPs a copy of the educational tool they would receive. The control arm received a home safety pamphlet. It’s two pages. It was very easy to read.

Mara: And then immediately after the visit or within a couple days, depending on what they were doing right after the visit, we interviewed them. And then we followed them by their charts for 18 months to see whether or not they were screened. And 18 months was at least two years since their last mammogram because in order to participate, you could not have been screened for six months, but you had to be screened in the past two years. We wanted these people who were in the cycle of being screened.

Mara: And we found that the decision aid did lead to reduction in screening and a 9% of a significant result from about 51% in the decision aid armor screen and 60% in the control arm. But there was actually geographical variation although it didn’t quite make statistical significance in the interaction effect. But basically in Boston, where we are very excited about screening, there was about 72% of women in the control arm screened and follow up versus 59% in the decision aid arm. In North Carolina, where screening after age 75 is much less common, only 22% of women in the control arm were screened and 2% more on the decision aid arm were screened. So like maybe some of these women who were in good health were like, “Oh, I haven’t had a mammogram in a while. I’m going to get screened.” But it didn’t ultimately increase it that much.

Mara: So overall there was a significant reduction. And that was our overall aim because we felt that everything women have always read about mammography before that was get a mammogram. It’s good for you. If you’re a good woman, you’ll get a mammogram. And here it was like more of this is what we know about the pros and cons and what do you want to do? And so we did learn in that study that even… Here we were trying to take the burden off primary care doctors. And I don’t have time to have these long involved conversations, especially it was only one screening test. There’s lots of screening tests. And so we were hoping that a patient could read it before a visit and then be prying for the visit and have a discussion. And a lot of studies show that decision aids worked well that way and that moves the discussion during the visit from information passing to values discussion.

Mara: And it probably did all that, but it still… Our tool wasn’t designed to support PCPs. And so what we’re doing, we have an R1 now that we’re using output from CSNET, those simulation modelers, so that we can individualize outcomes for women 75 and older based on their risk and their health. And then we’re going to have like really quick, easy visuals to show you your chance of dying within and without screening, your chance of breast cancer with and without screening, and your chance of dying in general and a PCP might just use the chance of dying from breast cancer. It’s going to be very flexible. And so I’m excited to see how that one works. But it’s designed for PCPs to use with patients during a visit, but we’re working on it.

Eric: Now I remember a study by Nancy Schoenborn where she talked about how to have these discussions about prognosis and screening tests. And what I remember from that was that we did a podcast with her. Right, Alex?

Alex: We did. Yep.

Eric: Was the line that patients don’t like to hear that they’re not going to live long enough to benefit from a screening test.

Alex: I made that mistake when I was doing primary care in Boston telling an older woman, I said, “You graduated from this. You don’t need to keep screening for breast cancer. We can stop the mammography.” And she said, “Why?” And I said, “Well, you’re probably not going to live long enough to benefit.” And that was the wrong thing to say. You could feel the temperature in the room just dropped like nah. Mara and Nancy have helpfully provided better words to use.

Eric: And I think one of Nancy’s words was this may not help you live longer.

Alex: I thought it was this may not help you in your lifetime. What was it Mara?

Mara: This is more likely to cause you harm than benefit. Like in our decision aid, we use like for you, a mammogram may help you live longer. For you a mammogram’s very unlikely to help you live longer. So not like you’ll not benefit, but it’s unlikely to help you live longer. And I think it was a similar one that patients liked in her study and they didn’t, although I think over time, she’s done a few variations and there’s some patients feel differently. And I think more of the benefits-harm approach has prime versus this may help you live longer, this may not help you live longer approach has become the benefit-harm and focusing on the harms and that the harms for you are probably going to outweigh the benefits.

Eric: What have you learned about talking about prognosis with older adults? Because you just had a paper published in JAGS on this.

Mara: Yeah, no. So the more I… Again, this is like one screening test and we have all these screening tests and there’s the whole movement towards what matters most to you and like this overarching framework on considering decision making based on your life expectancy and where you are in life. And so ideally, we could talk to patients about their long term prognosis and then have more of a value-based conversation in general so that patients could then be on a pathway of what makes more sense to them rather than discussing each individual test each time. But I know Alex has done a lot of work in this too, talking to patients about their long term prognosis is challenging. Even myself, I’ve only done it a few times, but so it made me interested in could we have these conversations?

Mara: And I think there’s about like 10 studies before my study and basically around 50% of older adults are interested in their long term prognosis. And think it would be useful to them for planning for the future or some medical decision making and 50% are like, “You can’t predict the future. This is ridiculous. And why would my doctor talk to me about that?” And they say that although… So we worked on scripts to help clinicians talk to patients about their long term prognosis. And although all those 10 studies, they were all theoretical. They were all qualitative.

Mara: So we did do a study where we, I’ve talked about how we developed these scripts to help clinicians talk to patients about stopping mammography screening or stopping colorectal cancer screening. And we gave PCPs, it was a pilot, small, and I probably should also include it in that chat, but it’s an innovation of aging today. But we did give PCPs their patient’s tenure prognosis using either my index or Sei Lee’s index, depending on which gave actually the better prognosis. We gave the benefit of the doubt.

Mara: And then we also gave them the scripts. And we found that clinicians really liked getting the life expectancy information. They found it really helpful to themselves and they actually liked the scripts as well. And then about half of the PCPs said they actually talked to their patient about their life expectancy. So like when you actually have information about life expectancy, PCPs may feel compelled to share and not keep this information to themselves, but only about 22% said they were comfortable talking to their patient about their long term prognosis because it is a taboo topic in our world to talk about prognosis and you can’t totally know. Obviously, nobody can predict the future, but information can be helpful.

Mara: So we did also interview clinicians and adults 76 and older about talking to patients about their long term prognosis and we learned a few things about what would make these conversations more successful. The clinicians, it helps to be familiar with our prognostic tools because again, having that tenure information makes it like, okay, maybe I will share it. Maybe it’s not so bad. And there is data that if it’s like a longer prognosis, it is easier to share because everyone’s like, “Oh, great.” And then the clinician thinks it’s useful. The clinicians themselves think it’s a useful conversation, that they have a strong relationship with the patient so that if there is some awkward, the patient will be forgiving and such, that they feel confident discussing long term prognosis granted it’s like riding a bike. The more you do it, the more you get better. So you obviously have to start having a little bit of confidence and then get better. But I think some role playing and training can develop the baseline self-efficacy.

Mara: And then what makes it better on the patient side is that they’re interested in this information. And patients will sometimes say like, “I’m not going to live that long,” or there’s things that come up that give you a sense that they’re thinking about their own prognosis. And in our study, like 80% or something like that were thinking about their own prognosis. So these are on topic. This is a topic that older adults are thinking about and probably thinking about often that they’re interested in this information for planning. And again, that the patient feels that they have a strong relationship with the PCP can obviously help these conversations.

Mara: And then we came up with this overarching script and it’s really sure because in the end, everything’s in primary care and has to be brief. And then we learn from patients and doctors that it shouldn’t come out of nowhere. I shouldn’t be like, “Okay, today I want to talk to you about your 10-year prognosis.” Maybe I could say, “As a researcher I’m studying this. Can I do it?” But like other than that, no, it should come up in the setting of decision making or because of patient primes and says like something like, “Well, my surgeon says it’s not going to benefit me to have the surgery for 10 years. And what do you think my chances are of living that long?” If something comes up like that, rather than losing that opportunity, if we’re skilled to have these conversations, we could use it and get better at these conversations.

Mara: So we came up with a script and we used cancer screening as the example, but you could use the total knee replacement or whatever as the decision of choice, but some so something like the chances of benefiting from cancer screening tests are much lower as we get older. This is because in general, you have to live for more than 10 years to benefit from these tests. And then it’s good to ask them if they want to talk about their prognosis, like would it be helpful to talk about how much longer you’re likely to live to help us decide together about cancer screening to test? And we added in that this discussion may also be helpful for making decisions about other medical tests or treatments and may allow us to focus on what matters most to you in your life.

Eric: It sounds like we’re starting off with the reframe. Like why are we talking about this now? So that’s the first sentence. So attaching it potentially to a diagnostic test or a screening test or a procedure or something. In the hospital, it’s usually the hospital. So this is helpful from the outpatient side, really attaching it to something then going from the reframe, why are we talking about this now?, to an invitation. Is it okay if we talk about this now? And potentially adding why we should talk about it.

Alex: You make it sound like a palliative care prognosis goals of care discussion, Eric.

Mara: Yes, we did. I think the advisors, the PCPs who have participated might have known something about palliative care discussion.

Eric: I am, Mara. If they say, no, I don’t want to talk about it. Did you talk about it anyways?

Mara: No. No.

Eric: If they do want to talk about it, then how do you actually talk about it?

Mara: Great. So we can express prognosis or life expectancy. So like life expectancy is saying you have around 10 years to live or five to 10 years where prognosis is you have 50% chance of living 10 or more years. And in our work, we found that patients were a little bit more comfortable with prognosis because it does a better job of expressing the uncertainty. You could say the five to 10 years, but for some reason, the 50% chance of living 10 or more years was more palatable. But again, I think this varies from patient. We don’t have good numbers on who likes a lot better. But something like since information on how long you may have to live would be helpful to you and planning for your future based on some risk calculators or based on the information from others or age and in similar health, you have about a 50% chance of living 10 or more years. Regardless, I’ll do everything I can to help you live comfortably for as long as possible.

Mara: And you can also qualify. Of course, everyone is different and it is impossible to know the future. Stealing from palliative care literature definitely, but it’s important to express uncertainty and being there for the patient. And one thing that came… Oh, sorry.

Eric: And how do you address uncertainty? How does Mara address uncertainty?

Mara: I like the obviously we can’t know the future, but we can use data from people like you with your age and your health factors and give you a sense if that’s helpful to you.

Eric: Well, I question the we can’t know the future. Unfortunately I got bad news to tell both of you. You’re going to die. You have a high degree of certainty. I know the future for both of you.

Alex: Well, flipping the script, Eric, do you tell patients that?

Eric: I think about it like hurricane forecasting. So like we know where the hurricane is right now. So I have a high degree of confidence where it is now. In like four days, five days, where we think it’s going to be is more unclear, but in a month, with a high degree of certainty, I know what’s going to happen. So I think similar to when we’re talking about prognosis, I try to be very specific where my uncertainty lies. And it’s not that I don’t have a crystal ball or I can’t predict the future. For the vast majority of patients, I can. I think it’s whether or not it’s hours to days, days to weeks, weeks to months, months to years, years to decades, many decades.

Eric: So like I just talked to somebody this morning about it and I I use ranges and then if I want a hedge, I may say maybe a little bit longer or a little bit shorter than that. But I don’t say, I don’t know the future. I don’t know whether or not your loved one’s going to die in a month from now because my hesitancy is, are they going to make it in the next couple hours or are they going to make it in… Can they make it a couple more days? That was this morning’s discussion. And oftentimes, that’s my hedge is that little bit of gray zone.

Mara: So predicting short term outcomes are much easier than predicting long term outcomes.

Eric: The super long term outcomes are not hard, right? It’s like the 10 year, 15 year. I know I’m going to be dead in seven years. There is no question about that.

Mara: Life is the biggest risk. You argue life is the biggest risk factor for death.

Eric: Yeah.

Mara: But if you’re using other risk factors, they tend to do a better job. If they’re collecting data now and predicting a short term outcome. So the further you get out, the harder it is to predict. So I think just on time, more stuff can happen than you included in your prediction model or in the data that we’re using. So there is some prediction. It’s harder to predict… Even weather, they only predict for like… You look at the day before if you really want to know and then like 10 days before it’s screwed up. So that gets harder. So I do think there has to be a better explanation.

Eric: Yeah. It also matters what we say is inaccurate prediction. Like for a 90 year old, we have pretty good data around whether or not they’re going to make it another 20 years. For a 30 year old… I think that the question is always like what is an accurate prediction? And I guess that’s the hard part, right? When we’re thinking about any of this, like are doctors, nurses, good at prediction? It’s how do you actually define what’s good?

Mara: No, actually like in this 50, it’s like 1% have less than 10 year old prognosis. If you’re like 55 to like even 64 and like 65 to 74, maybe it’s like closer to 10% and maybe 15 if you go to the 70 to 74. So it’s not that many have the short life. It starts to get more common and then it’s easier to predict as you get older.

Eric: Yeah. I think that the challenge always with these predictions is like it’s never just black and white. We’re trying to get closer to fine.

Mara: That was awesome. I guess one thing about long term prognosis which we don’t know is that it’s anxiety provoking. Like we’re talking short term prognosis can be anxiety provoking. I don’t have from my data and it was kind of, we were starting to realize maybe it’s not as anxiety provoking to talk about these long term because it’s a little bit more uncertain.

Eric: Last question for you, Mara. You have a magic wand. You can have clinicians do one thing in their practices around cancer screening prognosis. What would that be?

Mara: Not just recommend it. To explain that there’s harms and that it should be a shared and thoughtful decision.

Eric: Great. Well, before we end, Mara, Alex, do you want to give us a little bit of Closer to Fine?

Alex: (singing)

Eric: Mara, a very big thank you for joining us on the GeriPal Podcast.

Eric: Big thank you, Mara.

Mara: Thank you guys.

Eric: Thank you as always Archstone Foundation for your continued support and to all of our listeners.