HLOL Podcast Transcripts

Health Literacy

My Life, My Story: In Initiative to Help Tell Each Patient’s Story (HLOL #196)

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.

A while ago, I happened upon an article about an initiative from the Veterans Administration, or VA, Healthcare System. This initiative helps patients tell and share their personal stories. It’s called My Life, My Story.

I was so intrigued and impressed that I invited two of its leaders to be guests on Health Literacy Out Loud, Happily, they both said yes.

Dr. Susan Nathan is a Geriatrician and Hospice and Palliative Medicine physician at VA Boston Healthcare System. She’s an Instructor in Medicine at Harvard Medical School, and Adjunct Instructor in Medicine at Boston University School of Medicine.

Dr. Nathan is the site director for the My Life, My Story Project at VA Boston.

Thor Ringler is a poet and a therapist. He is the national program manager for My Life, My Story, and works as a writer-editor at the VA hospital in Madison, Wisconsin. Thor has an MFA in Poetry and an MS in Marriage and Family Therapy.

Welcome to you both.

Dr. Susan Nathan: Thank you so much, Helen. It’s great to be here.

Thor Ringler: Thanks, Helen. It’s really good to be on the call.

Helen Osborne: I can’t wait to share this with listeners of Health Literacy Out Loud. But let’s start at the beginning of this story. Please tell us what My Life, My Story is all about.

Thor Ringler: Helen, the program started here at the Madison VA in 2013. It was actually a project from a psychiatry resident and two of his psychiatry mentors here at the VA.

Their idea was, “Wouldn’t it be great if new providers who were coming into the system, especially residents who were only there for a year, if there was some way that they could get to know their patients before they met them?”

Helen Osborne: I’m sorry. I’m just being cynical. I’m thinking, “What a novel idea, getting to know your patients.”

Dr. Susan Nathan: Before they met them, Helen. Before.

Helen Osborne: Oh, before they met them?

Dr. Susan Nathan: Yes.

Thor Ringler: The idea that they’d get to know them, but also that they’d know them before they met them.

They had this thought, “Wouldn’t it be great if there was a story, a short narrative, about the person and what matters to them in the medical record that providers could read?” That’s where the project really got its genesis.

They applied for a grant from the VA, from the Office of Patient Centered Care. It was a pilot project here at Madison and I was hired on that initial project six years ago. That’s where the project started.

Helen Osborne: Obviously, it’s been going on. For a short grant, six years is a long time. There’s been more to the story, the continuing chapters.

Thor Ringler: Exactly.

Helen Osborne: Susan, what about from your perspective? How did this all begin and why is it working so well?

Dr. Susan Nathan: Here in Boston, the idea that stories belonged in the charts or are integrated into the healthcare, it’s been in the ether and in the culture for some time, definitely pre-dating me.

I’m a clinician. I do full-time patient care, and I was taking care of a patient, a veteran, in our hospice unit. By happenstance, I came across a story that had been written by a social work intern from an interview with this veteran just a few months prior.

It gave me so much information and helped this patient really become this fully formed person. It was almost like I could see him again compared to where I was at that exact moment in time where he was so declined and really alone. He didn’t have family or friends around him. Yet through this story, I was able to see more of this person.

After that, for me, I found it so transformational and it impacted greatly my experience of caring for this one veteran. I thought that it would be something that could impact and transform a lot of other people.

Within VA Boston, we’re a very large training center, so we have many trainees. This is ranging from students to residents and fellows from all different health and social professions.

The idea, similar to the origin back from Madison, was, “Is there a way we could integrate this into the clinical education experience so that as people are coming through learning medicine, healthcare and their field and taking care of veterans, we could then integrate this and say, ‘The story is important and central, and this is how you get that story. This is how we do it, and this is how you can do it going forward’?”

Helen Osborne: I can relate to this quite personally. I actually did my training at VA Boston a long time ago. I still remember some of the patients I treated and worked with. But when I saw them, they were in crisis. That’s why they were in the hospital. Things were going very badly.

My role as an OT was to try to get them back to being functional again. I could just pull together bits and pieces of who they were before this crisis happened. I really think that knowing who they are, where they came from and what they cared about would have made a big difference in my treatment and care.

Dr. Susan Nathan: Yes, that feels very familiar. I think for me taking care of patients, and for other doctors and clinicians I talk to, this idea of “Who is this person?” just changes everything.

In the moment, it’s not the full picture. How can we connect, share and rebuild this person if we don’t know what we’re striving for, essentially?

Helen Osborne: That’s why we all go into healthcare, I think, or however we care. In-patient, outpatient, community or public health, all of us and all our listeners, too, care about somebody. That’s why we’re in a helping profession. How can we do it better?

Let’s go through some of the basics here. I would expect for a lot of people this concept is resonating with them, but how in the world does this happen? We are so busy, and all of a sudden, there’s going to be a published story about someone’s life? Tell us the mechanics about making this happen.

Thor Ringler: Boston and Madison are a little different in terms of the models they use. Here at Madison, at the VA here, we use staff, like myself, who interview veterans and write up the stories. But we also use community volunteers who have a background in healthcare writing. They’re sort of the staff that help us write the stories as volunteers.

Then at Boston, it’s the student learners who are contributing most of the stories.

The actual process of the interview and the writing, typically, is a 45-minute interview. We ask patients, veterans, “What do you want your care team to know about you as a person?”

Helen Osborne: This is all in the spoken word? This is done person-to-person sitting in the same space, or is it done by phone or internet? How does this interview happen?

Thor Ringler: It’s mostly face-to-face. We do some phone and some video, but here, at least, it’s bedside, so you’re sitting in a chair by a patient’s bed interviewing them about their life. It’s very intimate, I would say, and personal. Those interviews take about 45 minutes, I think.

Then after the interview, the interviewer writes up a story. That story is approximately 1,000 words long. It’s told in the veteran’s voice, in the first person, and it reflects the contents of the interview.

Then after that story is written, the interviewer or program staff return that story to the veteran, and the veteran gets to review the story and make any changes that they want to it.

Helen Osborne: That’s neat.

Thor Ringler: It’s only once they’ve approved of it and said it’s okay, that’s the point when it goes into the medical record.

Helen Osborne: This is unusual to healthcare. It’s certainly nothing I’d ever heard about before. What’s it like when you broach this with a veteran, like, “Hey, I’m a total stranger to you. Do you want to tell me your life story in 45 minutes?” How does that go over?

Thor Ringler: Susan, do you want to answer that?

Dr. Susan Nathan: That’s a great question, Helen. I would say it goes surprisingly well.

Helen Osborne: Really?

Dr. Susan Nathan: From our experience and from other VAs, about half of the veterans we offer this to will right off the bat say, “No, thank you.”

It’s totally optional. As soon as we say either My Life, My Story or, “Tell us about your life,” they might say, “No, thank you.” They might say, “I’m private,” or, “I just want to focus on the future,” or, “I’ve had some hard times in the past,” or, “I just want to focus on my health.”

That’s whether or not we know the veteran, like there’s a relationship between the interviewer and veteran, or whether it’s a stranger.

It’s just as likely and just as effective when we go in as a stranger. Sometimes when I have time and I’m not seeing patients, I might just walk up and down the hall and if I see somebody who looks bored and awake, I might just go in and offer them the experience.

For the person who wants to share, that’s it. They opt in. For those who don’t want to share, they opt out.

I think what’s really important that Thor said is in the design of the program. Even for somebody who does decide to share, maybe when they’re in that telling mode they open up a little bit too much or share things that are too close to home. When they have that opportunity to review it again, then they have the chance to pull back.

There’s a lot more agency, control and sharing of power in this process than there is in a lot of other medical encounters.

Helen Osborne: You said this started in psychiatry. That was my background, too. You must have some controls in place so that this 45-minute session doesn’t turn into a therapy session, correct?

Thor Ringler: Yes. Having a background in therapy, I would say that it’s just a very different process going in as an interviewer and a witness to somebody’s life rather than in a helping role.

It creates a really different dynamic. I think that actually takes a little bit of getting used to, or it did for me when I first started. It’s that thought of, “I’m really just here to listen, encourage and to learn more really in a total learning, unknowing mode.”

It’s very different to go into a conversation or interview not knowing and then truly just discovering along the way, rather than going in as someone with expertise and trying to work with a patient toward some sort of outcome that he or she wants.

It’s a very different dynamic I would say. A lovely dynamic.

Helen Osborne: You do love the dynamic?

Thor Ringler: Yes. It’s wonderful.

Helen Osborne: I loved how you worded it. I was just taking some notes. You listen, you encourage and you’re just learning more. What a wonderful receptacle to be.

What kinds of questions would you be asking someone to get this learning and life story happening?

Dr. Susan Nathan: We have a question guide, but I always like to start with, “Let’s begin at the beginning. Where did you grow up and what was it like?”

That, I think, sets the tone, because so many of these interviews are done while the person is either admitted into hospital or in a post-acute care setting.

Enmeshed in the medical system, people are very primed when you go in and ask them about their story. They might automatically go into their illness story or what brought them into the hospital. By asking that more specific question, I think it helps to set the tone of the sort of story that we’re looking for.

That’s a common question we get from veterans. Once we’re explaining this, they say, “What kind of story do you want to hear?”

Helen Osborne: It’s not just a narrative of their illness. It’s a narrative of whatever part of the life they want to share?

Dr. Susan Nathan: Exactly. I think the question guide that we have is very intentional. There are no medical questions that are asked in that. It’s not unusual that the health or illness story gets told as part of this, because it’s interwoven with the life story, but that’s not the aim of this at all.

It’s really to ask intentionally about the other side of the person. Not about health, illness or pathology, but, “Who are you beyond this hospital gown and room? Who are you in your regular life?”

Helen Osborne: That story is just resonating so much with me.

For our listeners of Health Literacy Out Loud, I want to let you know that there is this guide and it’s wonderful. I read it, this guide about how to elicit stories and just the mechanics of making this happen. We will have the link on the Health Literacy Out Loud web page for this podcast.

Another question I have has to do with photos, seeing the person. Do you ever include a picture of the person when they were healthy or well, or whatever point in life they wanted? Or is it the written word, solely?

Thor Ringler: Right now, just because of the VA’s EHR, or electronic health record, photos aren’t really easily included in the stories, I would say, just because it’s an older style program.

If there was a way to easily have them show up so a provider could see them, that would be great. But at the moment, they would be in a separate location, so it wouldn’t be a seamless experience. Right now, it’s just text.

Helen Osborne: I know, for some people we visited in long-term care facilities, often the family brings in a photo of their loved one so that there is a connection and the provider would have a sense of who that person is.

What I’m curious to hear now is what the impact is of this program both on the veterans who are telling their story and on the provider. We can start either way. I want to hear both perspectives.

Dr. Susan Nathan: I can comment on the provider side. Especially for the learners, the people who are doing these interviews, this is a time when they’re early in their training and early in their careers. There’s definitely some trepidation going into this interview.

Somehow, and people tell me this, it feels vulnerable more so for the interviewer. The interviewer feels vulnerable.

Helen Osborne: Oh, okay.

Dr. Susan Nathan: Yes, which was surprising. In our clinical roles, we’re talking to strangers, we’re taking very intimate personal histories and health histories and we’re asking very intimate questions. Yet somehow, this is different and this can feel more personal.

Then at the end, the outcome is that the learner is surprised and really honored how open the veterans are and how willing to share.

This exchange here, it’s really bidirectional.

Helen Osborne: How wonderful.

Dr. Susan Nathan: It’s the space that we give for the veteran to tell their story. But it’s also for the learner to feel like they were now part of something and they were able to make meaning in this.

You could see it as another assignment or it’s a task you have to do. Yet, it’s so much more once you’ve gone through the experience.

Helen Osborne: Thank you. What are you hearing from the patient perspective about having gone through this telling of their story?

Thor Ringler: We do surveys of veterans after the process is over. From those, we get great feedback about the program and people really want it to continue.

There are also some quotes from particular veterans who were interviewed that I think really talk a little bit about the impact these stories can have. I’ll just read one of those right here.

This is a comment on a survey we got back. “Going through this process of writing my life story has helped relieve some of the pain, physical and emotional. But more importantly, just when I thought I hadn’t made an impact on anyone’s life, after sharing my story with family and friends, I realized that I did.”

Helen Osborne: Wow. I have no words to say after that. That’s so beautiful.

I think I want to put a pause and close out this chapter of talking with you about My Life, My Story and fully appreciating the human we are talking with, and caring for.

Thank you so much for all that both of you do, and for sharing it with us on Health Literacy Out Loud.

Dr. Susan Nathan: Thank you so much, Helen. This was wonderful. Thanks, Thor. Always great to talk to you.

Thor Ringler: Thank you, Helen. It was great talking to you. Wonderful questions. It’s always wonderful to be on a call with Susan. Thanks again.

Helen Osborne: Thank you both.

As we just heard from Dr. Susan Nathan and Thor Ringler, it is so important to remember who that person is we are caring for and caring about. But that can be hard to do in the bustle of day-to-day healthcare.

For help clearly communicating your health message, take a look at my book, Health Literacy from A to Z. You might be especially interested in Chapter 31 that focuses on the power of stories.

Feel free to also explore my website, www.HealthLiteracy.com, or contact me directly at helen@healthliteracy.com.

Health Literacy Out Loud podcasts come out every few weeks. You can get all episodes automatically, for free, by subscribing at www.HealthLiteracyOutLoud.com. You can also find us on iTunes, Google Play, Spotify, iHeartRadio, RadioPublic, Stitcher or perhaps wherever else you get your 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.

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