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 amazing people. You will hear what health literacy is, why it matters and ways all of us can help improve health understanding.
Today, I’m talking with Dr. Aretha Delight Davis and Dr. Angelo Volandes. They’re an amazing team. Not only are they married to each other, but they also together create, run, research and otherwise make possible ACP Decisions, which is an ever-growing collection of video support tools designed to help patients and families make informed decisions about Advance Care Planning, or ACP, and end-of-life care.
They both are physicians. Dr. Davis is also a lawyer. Their accomplishments are many and build on a deep and unwavering commitment to empowering patients.
Years ago, I heard Dr. Volandes speak about his research on the power of videos. More recently, I met Dr. Davis in person as she asked me to review their video scripts from a health literacy perspective.
Individually, collectively, I am wowed by their work and delighted to introduce them to you on Health Literacy Out Loud. Welcome.
Aretha Davis: Thanks for having us.
Angelo Volandes: Thank you so much for inviting us.
Helen Osborne: It’s great. You do videos. I do podcasts. Let’s use all these forms of media to let everyone know about communicating clearly on such hard things like Advance Care Planning. Let’s take it from there. What really do you mean by that term, Advance Care Planning?
Angelo Volandes: I think that there are a lot of meanings to the words Advance Care Planning. I think what Aretha and I mean by it is a process whereby people, not necessarily just clinicians, but families, individuals and clinicians have the conversation about what’s important to them.
It usually has to do with what brings you joy in your life right now and what brings you happiness.
If you had an illness that didn’t allow you to do those sorts of things, what would your values and priorities be at that point? It’s to help guide the healthcare system and clinicians to better understand and honor your voice and your perspective when you’re not able to.
At least that’s the way I envision Advance Care Planning. Aretha, what are your thoughts?
Aretha Davis: I’m in complete agreement with your description. I would just add perhaps a couple of additional descriptors. I would emphasize that Advance Care Planning is a process that is flexible.
When we think of Advance Care Planning, we’re thinking of a model that’s more, as Angelo said, a communications approach. It emphasizes an ongoing nature of conversation.
Really, the goal is that patients, their loved ones and healthcare team members have a shared understanding of the patient’s medical status or healthcare status, their values and their goals.
Really, for us, it’s incredibly important that Advance Care Planning is a means by which to inform and really empower those loved ones around the patient, especially if they are designated surrogates, so that when the time comes and, unfortunately, that patient becomes incapacitated, they can make medical decisions that honor and are concordant with not their independent values and wishes, but those of the patient.
Helen Osborne: It’s interesting that when Angelo started talking about this, he talked about joy and happiness. That’s certainly a time of life, end of life, that I don’t think of as very joyful or happy.
I’m really hearing and certainly learning from both of you about ways to make the most and the best of that time.
You’re both very esteemed, very accomplished as doctors, and Aretha also as a lawyer. Is that how you’re coming to this project, to the Advance Care Planning? Or are there other reasons why you’re focusing on this so much?
Angelo Volandes: I think the reason why I dedicated my professional career to Advance Care Planning is because I was seeing what was happening inside hospitals, especially as a resident.
I thought that there was a focus on medical technology and doing things to patients upon their bodies, but there was no focus on having a conversation and really getting to know that person behind the johnny coat.
As I was a resident seeing all this, as I was a fellow and even as a young attending, I decided that we have to change this model from a technological perspective, the priority given to technology, to one focused on the patient.
We want patient-centered care. From a professional perspective, I came to this through my own experience as a clinician and seeing how poorly we do this.
Helen Osborne: I remember seeing you, and it was a long time ago. When you were talking about that, you were fairly new in practice, I think. Talking about that and the fact that it’s still resonating with you and coming across so loudly as a professional is pretty vivid to me.
What about you, Aretha?
Aretha Davis: I come to this work from a very different place. In my prior life, I was an attorney, so I approach this from more of a social justice perspective. But really what brought me here was my experience with my father.
I was a corporate law attorney, and really enjoying that life. I had a conversation with my father in which in a matter of an hour came to realize that he had terminal cancer. The journey that my mom and I went on as his caregivers, experiencing and seeing my dad and trying to help navigate the system with him.
I thought that I was a particularly sophisticated consumer in a way and certainly one who was able to effectively advocate for themselves. But I was finding that certainly far more challenging than I had anticipated it would be.
For the rest of my family and most people in general, the experience would be very different for them, so it was really from a patient or a loved one’s perspective and feeling as if it was not incredibly empowering.
Helen Osborne: Thank you both for sharing those stories, professionally and personally. I know then, Aretha, you went off to medical school from there to make it better. You’re doing so much right now.
From a health literacy perspective, the work that I’ve been doing and many of our listeners care a lot about is that we’re all affected by health misunderstanding and miscommunication. But perhaps the folks we’re advocating for are disproportionately affected even more. From all of your perspectives, what’s so hard about communicating about Advance Care Planning?
Angelo Volandes: I think a major difficulty is that most clincians are not trained to have these conversations. Most of the focus in med school, residency and future training is all on the technology. It is not on communicating with the patients, and that’s no surprise.
The reason I got into med school, and it’s a really great med school, was because we both got As in organic chemistry. Not because we got an A in English.
Helen Osborne: That’s a good point.
Angelo Volandes: I think we could do a better job at training people to value talking to patients and, even as we get older as clinicians, to value clinicians’ time and to reimburse them for talking.
I think that the training is a huge part of it, and I think that contributes mostly to why Advance Care Planning is so difficult. We don’t train doctors, nurses, social workers and patients on having to do the most important procedure.
I should probably say we don’t train doctors, because we actually do train nurses and social workers, but we don’t do a good enough job empowering them to lead that conversation.
Helen Osborne: That’s interesting. Could it also be because these conversations are so uncomfortable? As professionals, we’re used to talking with patients about stuff going on. But sometimes it can touch that core inside of us and we can be feeling pretty awful at that moment if we’ve just been dealing with Mom who’s really sick. Is it the topic itself too that can be so hard?
Aretha Davis: I think so. I think, from a societal perspective, I would best describe it as a bit of death illiteracy. What I mean by that is that the realities of the dying experience have changed over time. In many ways, dying today is a lot harder than it was in the ’40s and in the ’50s.
People are not familiar with modern death because it often takes place in hospitals or in skilled nursing facilities as opposed to the home, where patients in the past were surrounded by their family members.
People are blissfully unaware of what the dying process is like. They don’t know that often the medical interventions that accompany this process are nothing like what they see on television or in the movies.
Helen Osborne: I was wondering about that. What’s the role of TV and movies? You watch a medical show on TV and in an hour, everything is neatly tied up in a pretty bow.
Aretha Davis: The reality is often quite different than that. That’s another driver of our work in a way, using a similar medium to help folks really get a better, more realistic understanding of some of the decisions, choices and procedures that accompany medical care when someone is seriously ill or nearing the end of their life.
Helen Osborne: Can you describe what you’re doing in these videos? I know you have a series of videos. Tell our listeners just a quick version of what these are about.
Angelo Volandes: I think when we look at our videos, there are three different buckets.
The first bucket is to help patients who are making decisions in the moment. I might have a serious illness and I need to sit down with my clinician because there’s no one right answer. There’s only one right answer for me. I need to understand the options, the risks and benefits and the tradeoffs of each option.
We do this through the visual medium, through videos, and these tools are often referred to as decision aids. That’s the first bucket.
The second bucket is really educational videos, so short videos, which you so wonderfully helped us script, at a literacy level that helps everybody in our country.
Helen Osborne: Thank you.
Angelo Volandes: These are educational videos that pick on topics such as “What is an advanced directive? What is a POLST form? What’s this thing called Advance Care Planning?”
Those are general educational videos and those are videos that anybody can see anywhere, inside the healthcare system or outside. In fact, many times it is at home on their computers, smartphones or what have you.
The third bucket is our caregiver series, which is called Caregiver Academy. These are videos to help the sons, daughters, husbands and wives and friends of people who are taking care of someone with a serious illness.
These help train them to better understand, “How do I make a decision for my loved one when they can no longer speak?” or, “What if my loved one picks to pursue hospice? What does that mean? What is hospice and what does that mean if I take them home on hospice?”
Those are our three buckets. Our goal is to leverage video technology to empower patients and families to really be at the center of care, because today they are not. We feel that you can leverage technology to empower people.
Helen Osborne: Why videos?
Angelo Volandes: It’s the lingua franca of today.
Helen Osborne: Just explain more. Tell us in plain language why.
Angelo Volandes: When I was in med school there was no YouTube, so it was easy to pick up a written pamphlet, read about it and learn something. Over the last two decades, what we’ve seen is a radical transformation in the way people understand things.
Whether you’re 22 or 92, our brains have been rewired to absorb information through the visual medium. It’s simpler. You’re able to use visual images in addition to written word and auditory, or listening. Using three senses is much more powerful to absorb information and to process it than it is to read something.
I’ve got to be honest. At the hospital, they clearly didn’t give our documents to you to simplify and make into a proper health literacy. They’re usually written at a post-graduate level. It’s kind of embarrassing.
I think videos simplify and sear in the information in a way that simply is not possible in the nonvisual medium.
Helen Osborne: Thanks. I know that’s actually a drawback and something I have to consider in these podcasts that are auditory only. We have the spoken words and there are transcripts with the written word. I don’t have the visual.
I’ve tried that over the years, but know that it takes a great deal of work to do a video and do it well. That’s just one more reason I admire all the work that both of you are doing.
Our listeners all care about communicating health information more clearly, but most people are not going to go out and start their own video educational company.
What tips or strategies do you have for people who want to communicate these end-of-life, Advance Care Planning conversations a bit better, whether as professionals or as just people and caregivers? What can we do?
Angelo Volandes: I love the first part, which is don’t create your own video company, because we do that. On a serious note, I think the first thing, and then I’m sure Aretha will correct everything I said incorrectly, is that people should recognize that this doesn’t have to be a downer conversation.
Guess what? We’re all going to die. It’s part of living, so let us be truly the authors of our life’s final chapters. Right now, if you’re not going to have this conversation, then the healthcare system is going to end up doing things upon your body and to you at the end of life that you might not want.
The first thing I tell people is don’t make it into a downer. It’s about life. It’s about good living. It’s about living as well as you can for as long as you can.
During Thanksgiving or the next holiday, just sit down with your family and have an open conversation about what brings you joy and happiness and what sort of medical care you might want if you weren’t able to do those things.
I think the best part is making sure that this is a happy conversation because it is about life. Make it more normal and don’t make it about death. It’s not really about death. It’s about life.
Helen Osborne: Thank you.
Angelo Volandes: That’s what I would say, but I’m sure Aretha has many more opinions.
Helen Osborne: Another tip or two, because we’re just kind of putting this together, like what can we easily put into place in our lives or our communication?
Aretha Davis: I think one easy step is to get on the computer, whether that’s at home, the library or elsewhere, and go to websites. There’s some really great consumer-facing, patient-facing or person-facing content out there.
One such organization, a nonprofit, is called The Conversation Project. They have toolkits to really help people start having these conversations outside of the larger healthcare system. Really, these conversations also need to be happening in houses of worship and in the public sphere.
Another great resource is The Letter Project that’s based out of Stanford University. Again, another free resource.
Helen Osborne: Great. I’m going to have these on your Health Literacy Out Loud web page so listeners can get these links.
Aretha Davis: Then the third one I would want to quickly mention is the Prepare website, which can walk an individual through some of the questions that Angelo and I feel are incredibly important when you’re going through the Advance Care Planning process. At the end of the process, you can print out something as well.
Then the next step is obviously sharing those values and goals with the healthcare team so that they can be brought on board. Allow for an ongoing conversation about these issues.
Helen Osborne: These are great. My respect for both of you is so profound and ongoing as you speak of this as professionals and as people about how we can make it all better.
We’re about to wind down this conversation for now. Please give the URL for what you’re doing too.
Aretha Davis: Our website, and we have free videos on our website as well, is www.ACPDecisions.org.
Helen Osborne: Aretha and Angelo, thank you. Thank you for being a guest of Health Literacy Out Loud. Even more, for doing all you do to help all of us have those important yet often uncomfortable conversations. Thank you for being guests on Health Literacy Out Loud.
Angelo Volandes: Thank you.
Aretha Davis: Thank you.
Helen Osborne: Wow. I learned a lot about Advance Care Planning and having those important conversations from Dr. Davis and Dr. Volandes. I hope you did too.
Communicating clearly, simply and effectively like that really isn’t all that easy. For help clearly communicating your health message, please visit my Health Literacy Consulting website, www.HealthLiteracy.com. While you’re there, sign up for the free monthly e-newsletter, What’s New in Health Literacy Consulting.
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Until next time, I’m Helen Osborne.