Helen Osborne: Welcome to Health Literacy Out Loud. I’m Helen Osborne, President of Health Literacy Consulting, founder of Health Literacy Month, and your host of Health Literacy Out Loud.
In these podcasts, you get to listen in on my conversations with some really remarkable people.
Today, I’m talking with Dr. Gretchen Schwarze, who is an Associate Professor in the Departments of Surgery and Medical History and Bioethics at the University of Wisconsin.
Dr. Schwarze is a practicing vascular surgeon and health sciences researcher who also directs the clinical ethics curriculum for the UW School of Medicine and Public Health.
Her research interests are in patient-doctor decision making for high-risk operations and end-of-life care for surgical patients.
Kathy Kastner, another Health Literacy Out Loud podcast guest, told me about Gretchen’s work with a shared decision-making tool called Best Case/Worst Case. I was immediately intrigued and think that you will be, too.
Welcome to Health Literacy Out Loud, Dr. Schwarze.
Dr. Gretchen Schwarze: Hi, Helen. I’m so excited to be here today.
Helen Osborne: I am delighted to have you here. I’ve read about Best Case/Worst Case. I’ve watched an animation on YouTube. I am so intrigued. Please describe for all our listeners, what is the Best Case/Worst Case?
Dr. Gretchen Schwarze: Helen, that’s a great question you hear. Best Case/Worst Case is a strategy for decision-making, and I think some people have a hard time understanding what that means, a strategy.
Helen Osborne: What do you mean by “a strategy”?
Dr. Gretchen Schwarze: I would say one strategy we use right now is informed consent, and surgeons use that by describing risks, benefits and alternatives.
We found that that strategy might not be working in certain settings for our patients and really wanted to find a new way to do it differently, so we developed Best Case/Worst Case to overcome some of the weaknesses of informed consent.
Helen Osborne: I don’t know exactly what you are talking about, informed consent as a strategy not working, but certainly putting on my health literacy and plain language hats, there are so many problems with it.
Make a picture. Create this for us, even though we’re only the spoken word. Please describe what happens in Best Case/Worst Case.
Dr. Gretchen Schwarze: Maybe I could explain a story to you about a patient.
Helen Osborne: I love it.
Dr. Gretchen Schwarze: I’m a vascular surgeon, and one of my partners had a frail older woman come in with a very serious vascular problem. She had a big aneurism. Surgery was going to be a really big deal for her.
Very appropriately, he sat down with her and her family and said, “This is a really tough problem. If we do surgery, you have a 50% chance of death. You have a 60% chance of kidney failure and a 90% chance of being on a ventilator after surgery.”
Informed consent is about risks and alternatives. He said, “As an alternative, maybe consider a palliative strategy.”
Helen Osborne: I’m just hearing in your story, you gave already three different percentages and used the word “palliative,” so am I on to what the problem is?
Dr. Gretchen Schwarze: So far. The family sat and thought about whether surgery was right for her. They went down the list and said, “If she has a 50% chance of death, she has a 50% chance of survival. If she has a 60% chance of kidney failure, she has a 40% chance of not having kidney failure. If she has a 90% chance of respiratory failure, then she has a 10% chance of not having that.”
They went down these numbers and said, “Fifty, 40, 10, she has a 10% chance of being exactly like she was before surgery, when that was never possible for her.”
Given how sick she was and how difficult the operation was going to be for her, that didn’t explain that to them. What happened was they decided they wanted to do surgery.
The surgery was long and tough, and the surgeons operated for 10 hours. Afterwards, the patient was in intensive care. The surgeons came by the next morning and she was hooked up on a ventilator, there were all these drips running and she was pretty stable. The surgeons were happy. This was the best it could have gone for her.
Her family came in and took one look at her, and she was all puffy, hooked up to tubes and couldn’t talk to them. It was very upsetting and they looked at the team and said, “No, she didn’t want this.” They asked the team to withdraw all of her life-supporting treatments.
I think the reason we developed Best Case/Worst Case is to get at this problem. Even though informed consent helps us give patients and families some information to make a decision, it doesn’t really help us get to the right decision, particularly when it’s complex, at the end of life and things are changing very dramatically.
Helen Osborne: I have so many questions about this. In that scenario, I can understand where the family came to that conclusion. They wanted Mom to be so much better, and what do you do with all those numbers? Do you think that that surgeon knew that that was likely what was going to happen?
Dr. Gretchen Schwarze: Yes, and I think the surgeon used the tools he had and what surgeons have been taught to describe what surgery would be like.
What Best Case/Worst Case does is take a different direction. The idea is to say, “Rather than me using these probabilities to tell you all these bad things that could happen, maybe a better strategy is to tell a story about what it might look like if everything went well and then another story about what it might look like if things didn’t go well.”
It’s saying, “In the best-case scenario, she would need a long operation. Then she would be in ICU, probably for several days afterwards, with breathing tubes and a lot of intensive care.
“If we were really lucky and everything went well, then maybe we could get her out of the ICU and have her be in the hospital for probably two weeks maybe.
“She was really very deconditioned before she came in and surgery would be very hard on her.
“Given how difficult surgery was and given that before surgery she had COPD, kidney problems and was just barely making it at home, even in the best-case scenario, if everything went well, we could get her out of the hospital and she would go to a nursing home.
“I don’t see, as her surgeon, her getting back home after surgery. This will change her life.”
That’s a very different thing than saying, “She has a 50% chance of dying or a 60% chance of kidney failure.”
Then also the other end of the spectrum is what does it look like in the worst-case scenario? I think many patients think that the worst-case scenario is that you go to the operating room and you die in the operating room.
I have to tell you, I’ve been a surgeon for 20 years and the number of patients I’ve had die in the operating room is less than the fingers on one hand.
Helen Osborne: Really?
Dr. Gretchen Schwarze: This just doesn’t happen. When people die after surgery, what happens is they go through an operation, they’re in the ICU and they have one complication and another complication.
Three weeks later, the family needs to get together and decide, “This isn’t going very well. Maybe we should withdraw.” That is very painful.
Best Case/Worst Case uses the strategy of storytelling and then boundary settings, where you say, “This is the limit of what is possible.”
Then after putting out what is best, what I see as a story about things going well and a story about things not going well, I can say, “I’ve been around for a long time. I’m a surgeon and I can tell you what I think is most likely to happen, given my professional experience, my knowledge of the literature and all of these things that give me some sort of understanding of what might be most likely.”
Then tell a story about how this patient had a bad COPD and bad kidney failure, and that I don’t think the worst case is what’s going to happen, but I think what is most likely is somewhere in between best and worst.
This patient was awfully frail and sick before she came into the hospital, so in fact most likely it’s probably a little closer to worst case than to best case.
Helen Osborne: Gretchen, thank you so much for making that just so clear and vivid. It’s kind of goosebumply.
I’m getting a sense of it and I really recommend that listeners to this podcast go to the YouTube video. We’ll have a link on your Health Literacy Out Loud web page, and see this in action.
I really want to hear a little bit more about this. I have a bunch of questions.
Dr. Gretchen Schwarze: Absolutely. Maybe one thing that would help, Helen, is to talk about the graphic aid, which I know is something that you like really like about Best Case/Worst Case, too.
Helen Osborne: I do.
Dr. Gretchen Schwarze: The graphic aid is a simple pen-and-paper diagram that the surgeon can write either on the fly, though we often teach surgeons to write it before they go to talk to patients and families because it just helps to not have to be writing and talking at the same time.
It’s really simple. It’s two straight vertical lines. At the top of each line is a star and the bottom of each line is a square. The vertical lines represent the treatment options that we’re talking about.
Going back to the patient I talked about, this woman who was having the surgery, the first line would represent what it would look like if she had surgery. The second line is this palliative care strategy that the surgeon offered.
The surgeon would point to the line and say, “If we did surgery, let’s talk about what would happen in the best-case scenario.” At this point, the surgeon would point to the star and say, “This is best-case scenario.”
We really like that the surgeon maybe writes a few words next to the star that go along with what’s in the best-case scenario.
Then the surgeon would do the same with the worst-case scenario, point to the square and say, “This is the worst-case scenario,” and describe that story like we just talked about, again with a few notations in the side about what the worst-case scenario is.
Then the surgeon would use that line, the distance between the star and the square, to make a little circle on that line and say, “These are the boundaries, the best and worst case. Let me tell you what I think is most likely.”
For some patients, what is most likely is actually pretty close to best case. Maybe it is the best case. For some patients, you know that if the worst-case scenario is looking pretty solid for them, that’s where they may really be headed up.
It allows the surgeon not only to say, “I can’t predict the future, but there are limits about what is possible,” but also, “I have some sense of what is most likely to occur.” Then use that graphic aid to try and give an estimate about where the patient might be between best and worst case.
Then once that piece is done, switch to the other side, saying, “We could consider a palliative strategy. Let me tell you the story of what that would be like in the best-case scenario.”
Helen Osborne: You do the equivalent of that?
Dr. Gretchen Schwarze: Absolutely.
Helen Osborne: Thank you so much for that. How do patients and families respond to this?
Dr. Gretchen Schwarze: That’s a great question, Helen. We’ve been very lucky. I have wonderful colleagues at the University of Wisconsin. Twenty-five of my surgical colleagues were trained to use this tool, and then we studied it here in the hospital.
Wonderful patients and families, we had 20 patients and families who worked with their surgeon using this tool. Then the patients and families allowed us to come to their house about a month to two months after the surgeon had talked to them.
When we walked into the house and said, “We want to talk about this decision you made,” spontaneously, without us asking, they ran to a drawer and picked out the graphic aid the surgeon had given to them and said, “When we were in the hospital, the surgeon used this, and it really helped us.”
Helen Osborne: I was jotting down questions I want to ask you, and one was does the patient and family get to keep this. You just made that so clear. They do. They seem to treasure this form.
Dr. Gretchen Schwarze: I think it does a lot of things. I think the patients and families told us that many of them were hoping for best case, but it allowed them to prepare and “We knew these other things were a possibility.”
It’s that hope for the best and prepare for the worst. It allowed them to have that understanding of the world of possibility before them and they really liked that. They loved that they could see a clear choice between two options.
If you have time to entertain a little story, I had a very lovely older gentleman who was a priest who got in a terrible car accident. He was very sick in the ICU, but was very alert.
The surgeon had come in and actually made seven copies of the diagram. They put it through the fax machine in the ICU and gave it out to everybody in the ICU who were all sitting in the room with him and the surgeon, going through best case/worst case. Ultimately, he decided that a palliative strategy was really the right thing for him.
We went and interviewed his niece about two months after he had died. She said, “I took this piece of paper on a trip around the country after he had died, and I used it to tell the story to my family about why we made the choices that we did.”
I think that we lose sight of how important narrative is for patients and their families, and that, by generating stories with them, it allows a deeper understanding of where we’re going and why things happen in a certain way.
I do think that having this very tangible thing to hold onto is really important, because it reminds us of the stories that are very personal within that decision.
Helen Osborne: Everything you’re talking about really is the essence of health literacy as I know about it, too.
Dr. Gretchen Schwarze: It is, isn’t it?
Helen Osborne: It’s that wonderful communication, personalizing it and making it relevant to that person. You bring in narrative, visual and also that element of simplicity. It looks straightforward. I’m sure there’s much more to it than that.
Before we go, I want to get your thoughts about how listeners to this podcast might take some of your lessons learned. Chances are we’re not physicians. We are people who somehow care about health communication and directly communicate with folks. What can we take from this tool and use in our worlds?
Dr. Gretchen Schwarze: Helen, I think that’s a great question and I can probably talk to you about it for 30 minutes.
Helen Osborne: We only have a couple, so go for it, Gretchen.
Dr. Gretchen Schwarze: I know, so I want to make two points. I think that the first point is that the intervention is about changing clinician behavior, and that’s hard. While I agree it has this really nice simplicity to it, it took us two hours with each surgeon, training them.
I just want to put out a point of caution that it is a real skill, and like all skills, it needs to be practiced.
I think I, like you, really love patient-mediated strategies to try to improve the conversations between patients and doctors, and I think that it can be used in other ways.
If I were counseling a patient who was going to see a surgeon who liked Best Case/Worst Case, what could that patient say? Maybe the patient could say to the surgeon, “Can you just tell me the story of what it would look like if everything went really well?”
I think that story, a surgeon could manage, even without the training. By using this power of storytelling, which I think anyone could understand, the patient would get a lot of information about how valuable that operation was to them. I think that’s a simple move forward from this point.
Helen Osborne: Could we maybe do that for whatever world we’re dealing with, whether it’s a therapy, an intervention or a medication? You probably wouldn’t want to overdo this, but maybe there are times that we could be thinking about if all this went as well as could be, what would that look like and what would it be like otherwise?
I would hope that maybe we could also invoke the patient’s story about what the best case or worst case is they’re hoping for or dreading.
Dr. Gretchen Schwarze: Absolutely. I totally agree with you, Helen.
Helen Osborne: This is just so wonderful. I am honored to be interviewing you and delighted you’re sharing this with listeners of Health Literacy Out Loud. And even more that this tool, this method, this strategy for wonderful but hard-to-communicate communication is out there.
Thank you so much for being a guest on Health Literacy Out Loud.
Dr. Gretchen Schwarze: What a pleasure, Helen. Thank you so much.
Helen Osborne: As we just heard from Dr. Gretchen Schwarze, it is so important to communicate, even about hard-to-communicate issues like outcomes and best case/worst case. Communicating clearly, simply and in ways others can understand can be hard to do.
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Until next time, I’m Helen Osborne.