Helen Osborne: Welcome to Health Literacy Out Loud. I’m Helen Osborne, President of Health Literacy Consulting, founder of Health Literacy Month and author of the book Health Literacy from A to Z: Practical Ways to Communicate Your Health Message. I also produce and host this podcast series, Health Literacy Out Loud.
Today, I’m talking with Dr. Rebecca Sudore, who is a geriatrician, palliative medicine physician and health services researcher. She also is Professor of Medicine in the Division of Geriatrics at UCSF, or the University of California San Francisco.
In addition, Dr. Sudore directs the Vulnerable Populations for Aging Research Core of the UCSF Older Adults Independence Center, and she also co-directs the Innovation and Implementation Center in Aging and Palliative Care.
Dr. Sudore’s research is about ways to improve advance care planning and medical decision-making for diverse, vulnerable older adults. She and her team created www.PrepareForYourCare.org, an interactive advance care planning website to help with this process.
I recently read a JAMA Internal Medicine article written by Dr. Sudore and others. It was called Engaging Diverse English- and Spanish-Speaking Older Adults in Advance Care Planning. I knew right away that this was a topic for Health Literacy Out Loud.
Welcome, Dr. Sudore.
Dr. Rebecca Sudore: Hi, Helen. Thank you so much for having me.
Helen Osborne: I’m just wowed by your work. Your article was astounding, and then I went to the www.PrepareForYourCare.org website and I’m just your fan and groupie.
Let’s take this from the start for our listeners who are just getting to know you a little bit and getting to know the topic. You focus a lot on advance care planning. What do you mean by that specific term?
Dr. Rebecca Sudore: Thanks for asking. Advance care planning, I would say, traditionally in the past has been focused all on end-of-life care. Most people think about it as only being about advance directives, but really, advance care planning is a process that is meant to support people at any age or stage of health in understanding and sharing their own personal values, life goals and preferences regarding future as well as current medical care.
Really, at the end of the day, it’s all about discussions, finding out what is important to someone, being able to talk about that with their loved ones, family and friends, and being able to advocate for one’s self with clinicians.
Advance directives are part of that process. But they’re not the only part of that process.
Helen Osborne: Thank you for really explaining that clearly. Certainly, in my mind and others’, we think it’s that piece of paper that you think about and sign, but it’s really so much more. You talk about all the communication in there.
What’s the problem? People have been doing this for a little while. Why have you invested so much of your time and energy in working on this?
Dr. Rebecca Sudore: Often when there’s a problem and health systems and risk management teams think about ways to fix it, the advance directive forms seem like a great way to go about it.
Helen Osborne: You mean making decisions like. “What would Mom want right now if she’s so sick?” Is that what you mean the problems are?
Dr. Rebecca Sudore: Exactly. Thanks, Helen. To take a step back and put it into context, again, it’s sort of thinking about what somebody would want if they were seriously or chronically ill.
Again, the advance directive forms really focus on a very narrow subset of those decisions like. “Would you want CPR? Would you want to be put on a breathing machine? Would you want to go to the ICU and be on machines?” Those are these very narrow decisions.
The healthcare systems thought, “It’s really great. To fix this problem, let’s just get everybody to fill out these forms.”
Then as you know, as often happens in the healthcare system with consent and other things, the lawyers got involved and then these forms became very legalistic sounding with very high health literacy and literacy levels with terms that are very hard to interpret.
Helen Osborne: They are hard. It’s also scary information. We’ve been through this in our family with dear relatives toward the end of life. What I discovered is those forms actually didn’t help us enough. We weren’t in a situation when it was a decision about pounding on someone’s chest or putting in a tube. It was much more of a gray area.
I was the spokesperson, and that form for the extremes didn’t cover all the decisions I needed to be authorized to make, and I wasn’t sure what that person wanted.
Is that what you’re talking about, too, those gray areas in there that aren’t just CPR, either doing everything or doing nothing?
Dr. Rebecca Sudore: That’s exactly it. We heard the same things from other patients and family members. One person in one of our focus groups said, “We got the form and we got the DNR,” or do not resuscitate, “in writing, but that’s all we knew. We didn’t know how to have these conversations. We didn’t know how to think about things beyond that.”
Exactly like you’re saying, Helen, I think what we heard from patients and their families is that the forms are important, but they’re not the end of the story.
What people are really lacking is the framework, the way to think about advance care planning and the skills that I need to feel empowered so I can decide what matters most to me and I can advocate for myself and my loved ones.
Helen Osborne: Can you tell us a story? You are a geriatrician and a palliative care physician. You do this work all the time. Can you make this real for us? Just give us a scenario when somebody might need more help. Then we’re going to lead into how your tool and website can change that situation.
Dr. Rebecca Sudore: I give an overarching anecdote, which I find hammers home the issue about the importance of discussions about this.
In my palliative medicine role, I do inpatient work, and I will often go to have family meetings in the ICU for patients who can no longer speak for themselves.
There’s a stark contrast that my colleagues and I discuss about patients and their family. Maybe this patient had completed an advance directive, say, five years ago or something like that. It gets pulled out in the chart, and the family never knew that it was even created.
Maybe the person across from me had no idea that their name was written down on that piece of paper as a person needing to make medical decisions.
The other thing is, even if they did, as you were saying, there are these checkboxes that don’t really describe why somebody felt the way that they did, what they view as their good quality of life, what is acceptable and what is not acceptable.
Then the family is like a deer in headlights not knowing what to do. The clinicians don’t know what to do, and that creates a lot of moral distress. It can create family conflict.
Then you contrast that to another patient and their family, same thing in the ICU. Maybe this patient never completed an advance directive, but their family is there and they can say, “We’ve been having these conversations for the past 10 years. It’s really hard and I still don’t know exactly what to do, but I do really know what’s important to this person, what they view as good quality of life and the things they would or would not want.”
It is a completely different conversation and experience for those two different types of families.
Helen Osborne: Wow. That would have made a huge difference for our family, that conversation. I just really felt like it was almost adversarial, me being the spokesperson against the medical system that wanted to do something that I knew was not in our family member’s wishes and values. Thank you for making that so real for us.
Then you had also said earlier a lot of these forms are very legalistic and filled with all those big jargon-y terms, and also they’re not all that considerate in terms of people who don’t have strong reading skills. They’re very complicated in many ways.
Tell us about what your research is and your tool, please.
Dr. Rebecca Sudore: Just getting back to the advance directives, because that still is a big part of the work that we do, and going back to these stories, when we started creating our easy-to-read advance directives, I was working at our county hospital and about 15% to 20% of those patients in the ICU didn’t have an advance directive and didn’t have somebody to make decisions for them.
Some of these patients were living in the ICU on machines for months, and doctors didn’t know what this person would have wanted.
About 15 years ago now, we created an easy-to-read advance directive that’s written at a fifth-grade reading level and has large fonts and pictures that help describe the text.
I’m sure many of your listeners know Michael Villaire.
Helen Osborne: Of course.
Dr. Rebecca Sudore: Institute for Healthcare Advancement. He was a great partner in dissemination.
We’ve updated those forms. For your listeners to know, they’re available on the www.PrepareForYourCare.orgwebsite.
Helen Osborne: For a cost or for free?
Dr. Rebecca Sudore: For free and for all 50 states. The form is great.
I’ll just say, too, one of the things about the forms that we have that are easy to read that gets to a little bit of your point is that we didn’t want to just have text checkboxes “yes, no, I want this, I don’t want that.” It really does wrap in some of the broader values questions, and it also provides space for people to write down why they feel that way.
If somebody is able to, they can write down, “I chose this person to be my surrogate decision-maker if I can’t speak for myself because they live close to me. They know what I want. That way, there isn’t family conflict,” or, “I feel very strongly about this medical treatment. Let me tell you why.”
I have to say, as a family member who’s been through this and as a physician, it really is the why that is so much more helpful at the bedside.
Helen Osborne: This tool is available. We will have this on your Health Literacy Out Loud web page too, but your website is www.PrepareForYourCare.org.
You talked in the beginning about how advance care planning is a process, not just a document. Now you have an easier-to-read document that has extra information.
Your website, I tried using it and thought, “Oh my goodness.” It looks like you were trying to address all those process issues, as well as just coming up with this ultimate paperwork.
Dr. Rebecca Sudore: Right. We created the easy-to-read advance directive and that was just the first step. As we’ve talked about and as you’ve said, people need more preparation. They need more help. That’s really where the www.PrepareForYourCare.org website came about.
We had talked to patients and families. We heard their stories, and we turned those stories into the content that’s in the PREPARE website.
What we wanted to do wasn’t just to tell people to do something, but a fallback on our behavior change theories and some of the things we know help to empower patients, we wanted to provide videos that show people how to do something.
For example, if a clinician and a clinic says, “You should go home and make sure that you choose a surrogate medical decision-maker in case you can’t speak for yourself,” that sounds easy for a clinician to say in that environment. But the person goes home and thinks, “Oh my goodness. How do I know who is the right person to choose? How do I bring up this conversation? What am I supposed to say?”
We really wanted to have something that was easy to use, walked people through a process and then also showed them these videos that showed people how to do things.
Helen Osborne: I’ve looked at some of your videos and you have people, it looks to me, representing a diverse population.
Dr. Rebecca Sudore: Yes. We created the website, we like to say, with and for diverse older adults and their families. We were and continue to be on a shoestring budget, so we’d still love it to be even more diverse.
As much as we could, we really wanted a range of race, ethnicities, genders and stories, too, about people who maybe want what we would term aggressive care and people who maybe want to focus more on comfort care so that there’s this range of different stories that people can relate to.
Helen Osborne: You’re not promoting a certain decision in one way or the other, are you?
Dr. Rebecca Sudore: No. I think that’s one of the things in thinking about this. We really went out of our way to try to balance that information so that people didn’t feel pressured or swayed. We present stories just as a way to help people figure out what’s important to them.
Helen Osborne: It’s a wonderful resource. I did it from start to end. I really thought I was just going to check it out a little bit so I’d be ready for our podcast, but I was immediately drawn in.
It took me all the way through the process of creating my own form, my own advance directive for my state, including my reasons on it. I thought, “Oh my goodness.”
I do recommend listeners everywhere to please go check out that website.
I also wanted to ask you about your research. Does this work? It looks cool. Does it work?
Dr. Rebecca Sudore: Yes. That’s an important thing for your listeners to know too. This has been the result of a very rigorous step-by-step research process, starting with talking to people in the community and getting their input, and then ending up with very large randomized control trials of the easy-to-read advance directive and PREPARE.
We just completed two large randomized control trials among about 1,400 patients, and what we learned is if we give people these materials, the PREPARE website and the easy-to-read advance directive, over a 12-month period, 98% of people, including English- and Spanish-speaking people and including those with up to 60% limited health literacy, were able to engage in some form of advance care planning.
When we actually looked in their medical record, we were able to increase the advance care planning documentation rate up to 43%, which is very hard to do in clinical care.
Helen Osborne: That’s astounding.
Dr. Rebecca Sudore: From a research perspective, this definitely seems to work and empower patients.
Helen Osborne: Have you seen this in your practice? Have you then treated a patient who might have had one of these or been through the process?
Dr. Rebecca Sudore: Absolutely. I’m a primary care geriatrician. All of my patients get these materials. I can talk a little bit about how I tell people about the materials and how I present the information and give that out.
Helen Osborne: Please do, because I was just going to ask you what our listeners can do. They’re not going to be creating a website like yours. Also, yours is available in Spanish as well as English, all the information.
Dr. Rebecca Sudore: Right.
Helen Osborne: They’re not probably going to be doing what you do, but we all care about communicating information more clearly with whoever we are talking with. Can you offer some tips and strategies of what works? One of them right there would be for a clinician. How do you even introduce this?
Dr. Rebecca Sudore: I think one of the nice things we’ve tried to do on the website is, again, our materials are free. People can download the advance directive for their state. They can print them out.
There are also the PREPARE pamphlets, which are also on the face page of the website, which I like to say are the CliffsNotes of the website. It hits the highlights.
Helen Osborne: For those who don’t know, CliffsNotes is like a condensed way to read a book. It used to be a brand.
Dr. Rebecca Sudore: Exactly. I have found that the pamphlet is a great way to introduce the website because it has pictures from the website and the same colors, and it’s inviting. That’s a good way to tell my patients about the website.
Then the easy-to-read advance directives are fairly self-explanatory.
To be honest, in my clinical setting, I give it to them as homework. I say, “You don’t have to fill out the form. Go home and look it over, and check out this website and maybe just look at one step. You don’t have to do everything. Just look at one step.”
If they haven’t chosen someone to be their surrogate decision-maker, maybe they just start with Step 1 of the program. Then they can come back and we can talk about it.
Many of my older adults, because I’m a geriatrician, don’t access the internet or aren’t facile with a computer, and I have found that that is still okay because they’re often in close contact with family members, friends or partners who do. That’s also a way that people access the website.
Helen Osborne: I can just picture someone sitting side-by-side at the computer and one using the computer and the mouse perhaps, but the other one watching the video. That would almost by itself, that shared experience, encourage the meaningful conversation.
I also wanted to let you and the listeners know, in my experience, I didn’t need to log in and give away any private information. I could continue as a guest, and I could get from beginning to end as a guest.
Dr. Rebecca Sudore: That’s exactly true. I think the only reason to save your information is if you want the website to save the information for later. We do host the website on what’s called a HIPAA-compliant server, which means it’s extra secure.
I think that’s one of the things to think about. Let’s say you’re in New York and you save that information. At the end of this year, 2019, we’ll have the ability to take everybody’s values information and automatically populate an advance directive.
Let’s say you use that for the state of New York, but then you are vacationing in Florida or you move to another state. You could easily come in, if your wishes are saved, and pre-populate a new advance directive.
Helen Osborne: Wow.
Dr. Rebecca Sudore: Maybe your surrogate decision-maker moved and you want to change it to someone else, but you don’t want to change all the other information. You can come in and change that one thing and still easily pre-populate an advance directive.
It’s just one thing to think about in terms of saving.
One other thing I want to alert your listeners to that we’re really excited about is that the PREPARE website content not only is available for someone to go through individually, but we created what we call movies of all of the steps.
Someone could go in and play Step 1 as a movie where a narrator would talk about all the content as well as play those how-to videos at a time.
The reason we’re excited about it is because we put together a free toolkit, which is on the website, for non-clinicians. These are really targeted toward people who work in libraries, churches or senior centers who have never done advance planning before.
Helen Osborne: Those are our listeners too.
Dr. Rebecca Sudore: It has allowed them to put on these group movie events for advance care planning. All the information is included in PREPARE and the toolkit walks people through how to do them.
Helen Osborne: Wow.
Dr. Rebecca Sudore: We’re hoping to disseminate this information, like I said, in the community, because to put on these events, really, takes no clinical training.
Helen Osborne: I love this even more. I just applaud you and you whole team for doing this and doing it in such a thoughtful way.
When you even gave that little scenario about someone who might have moved to a different state, I used to hear that a big problem was if you had a crisis somewhere, no one could access your paperwork because it was probably in your desk or something. You’re taking care of all of that.
Rebecca Sudore, you’re wonderful. Your team is terrific. Thank you so much for sharing it with the world and giving us the insider perspective on Health Literacy Out Loud.
We’ll have even more information and links on your Health Literacy Out Loud web page as well, but for now, thank you, thank you, thank you. This is health literacy in action.
Dr. Rebecca Sudore: Thank you, Helen. Thank you so much for having me.
Helen Osborne: As we just heard from Dr. Rebecca Sudore, it is important to clearly communicate our wishes for advance care planning too. But communicating clearly like this is not always easy.
You might want to take a look at my book, Health Literacy from A to Z, especially Chapters 12 and 18 that have information about creating forms and other to-do documents, along with issues of language and culture.
New Health Literacy Out Loud podcasts come out every few weeks. You can automatically get all episodes for free by subscribing at www.HealthLiteracyOutLoud.com. You can also find us in iTunes, Google Play, Stitcher Radio or wherever you get podcasts.
Please help spread the word about Health Literacy Out Loud. Together, let’s tell the whole world why health literacy matters.
Until next time, I’m Helen Osborne.