Navigating a complex health care system while living with a serious illness or caring for a loved one can be incredibly stressful, especially when loved ones have special needs or suffer from serious health conditions requiring palliative care. Inequity due to social determinants of health― the conditions in which people are born, grow, work, live, and age, or other factors further compound this challenge.
In this episode of HealthChangers, we travel to Austin, Texas’ most famous Conference, South by Southwest (SXSW) to speak with Cambia Health Foundation President, Peggy Maguire, and two palliative care leaders about the opportunities for working together towards an inclusive approach that makes palliative care more understandable and accessible for people and families across the age spectrum. In addition, these experts share information about the innovative solutions and strategies they are driving to ensure every person with serious illness and their caregiver lives well.
- Dulce M. Cruz-Oliver, MD, Assistant Professor of the Palliative Program at Johns Hopkins University School of Medicine - shares her experience with integrating palliative care education into the cultural lens of bi-lingual communities and how this is helping family caregivers.
- Debra Lotstein, Director of Comfort and Palliative Care Division at Children’s Hospital Los Angeles - highlights the value of tailoring palliative care solutions for children.
- Peggy Maguire, President of the Cambia Health Foundation - discusses the importance of educating people about the value of palliative care and empowering practitioners to look holistically at the issues that are impacting patients and families
Leslie Constans: Welcome to the HealthChangers podcast presented by Cambia Health Solutions, where we share real stories of health care transformation, from those experiencing it and those helping to make health care more personalized. I'm your host, Leslie. If this episode sounds a little different from the others, it's because we recorded it on the go at this year’s SXSW “Energizing Health” Health Equity Conference. This annual innovation festival of artists and innovators takes place each March in Austin, Texas. One of the panels in 2019 was called “How Innovations and Palliative Care are Changing Lives.” It featured a discussion on caregiving with a focus on the barriers, that challenge caregivers whose loved ones have special needs or chronic health conditions. After the session, I spoke with three of the panelists. Let's start with Dulce Cruz-Oliver. She's a physician and assistant professor of medicine at Johns Hopkins University and is a Sojourn Scholar with the Cambia Health Foundation. Welcome, Dulce.
Dulce Cruz-Oliver: Thank you. Thank you for having me.
LC: So, this morning when we talked about innovations in palliative care that are changing people's lives, you talked about a really innovative project that you've spearheaded. Can you tell us a little bit about it and what you learned?
DCO: My research work is focused on Latino family caregivers. It all started with this story of a person I met, Mary. I will call her Mary for now. A 60-year-old woman who was a retired school teacher with living parents who both had Alzheimer's, increasing their frailty. She ended up putting them both in a nursing home because she didn't have the mental health, the physical health, nor the means to pay someone to help her.
She received a lot of criticism and comments from her neighbors and friends, that she abandoned her parents in a nursing home. This story intrigued me the most because I was amazed at the amount of caregiving stress she lived with. On the other hand, you have other people that don't want to welcome strangers to their home to tell them what to do with their loved ones.
You have these two extremes and I wondered how to better help them. After some research, literature review and focus groups, I came up with hypothesis that if these caregivers received professional help earlier on in their loved one’s disease process, they may be able to keep them at home longer and hopefully avoid a nursing home placement.
After some research, our team came up with the idea of creating a telenovela and use this as a type of video on health education tool, to see if this changed attitudes among Latino family caregivers toward end of life care services specifically.
Cultivating a Culture of Engagement in Health Care
LC: How do people find that and how would they watch it and learn more about a caregiver story? And, on stage this morning you mentioned that a telenovela is sort of like a soap opera. Can you talk a little bit about that?
DCO: Yes. I will start with the second question. A telenovela is kind of like a video soap opera, but it's very different from a traditional soap opera. Telenovela is very popular among Latino culture because it's a story, and it has a beginning and an end, which is one of the main differences between a telenovela and a soap opera. Soap operas can go forever, but telenovela is a story that has a beginning and an end and has a message. And it's usually a message that has an impact socially. It's so popular and that's why we thought it will be a good fit to use also as an education tool.
It's an innovative idea to reach a community that engages with this kind of content. They know it otherwise in their life and their community and we’re using the telenovela to educate, but also to tell a story that people can relate to in their lives.
LC: Tell us a little bit about how you went about creating the telenovela and how people have responded to it.
DCO: I use this story because it's kind of like the base of the first telenovela I created. The telenovela is widely available on YouTube, called “Caregivers like me.” There's an English version and there's the Spanish version, “Cuidadores como yo.” This telenovela was part of a research project and that's why it's widely available because it was federal funding from the Geriatric Academic Career Award which was funded through Health Resources and Services Administration (HRSA).
“We found the telenovela was effective for Latino family caregivers to be more open to receive professional help and [understand] what palliative care is.”
We filmed it with our colleagues at the University of Texas in San Antonio. We filmed it, then later we showed it to a group of family caregivers. We did this across three places, Missouri, Texas, and in Puerto Rico. We showed it to a total of 145 family caregivers that self-identified themselves as Hispanic mostly.
And we did a pre and post-test and we asked various questions about attitudes. And what we found was that the telenovela was effective in changing the attitudes of the caregivers. What this means is that Latino family caregivers we're more open to receive professional help after watching the telenovela. Part of the intervention was showing them the telenovela and also explaining what palliative care is.
We also explained the different services that they can access in their area like a social worker, an adult daycare, a home care, and other ones. And they were open to contact all of those except for home care. Home care was the only one that was not statistically significant, but all of the other services were; there was an improvement in their attitude towards using those services. And these remain even six months after the intervention.
“Educational interventions are by far most effective, but they're not the only changer. I want to see something more comprehensive, an intervention that is directly specifically to caregivers at end of life.”
LC: It's fascinating how you can take a medium like film and here we are at SXSW, which has a big film element and help people relate to a difficult situation that they're facing and seek out solutions. Can you tell us a little bit about the story that's depicted in the telenovela?
DCO: This caregiver, and she is taking care of her father. Her father has Alzheimer's disease and the telenovela has three episodes. It shows the span of two or three years of her experience taking care of her father. And tells a story on about how everything started, and how her primary caregiver was the one that told her that she should consider getting more help, specifically a hospice care which have palliative care programs involved.
“There was an improvement in their attitude towards using those services. And these remain even six months after the intervention.”
The telenovela kind of shows her story and then at a certain point her own health is deteriorating. She ends up needing dialysis three times a week. At the end of the telenovela with the help of the hospice nurse, they come up with a plan to try to find more help through her own extended family that lives outside the United States, to see if they can help in caring for her father. The nurse also introduces respite care, which is within the hospice benefit. That's the main plot and the whole telenovela.
LC: What's next in terms of this project and what you're trying to do to support family caregivers?
DCO: Educational interventions are by far most effective, but they're not the only changer. I really want to see the telenovela integrated into something more comprehensive, an intervention that is directly specifically to caregivers at end of life. I joined a team of researchers that are called Hospice Caregiving Research Network team and they already have a study ongoing that integrates telehealth and online support group to see if this intervention helps caregivers of hospice cancer patients.
As their education piece they use recorded PowerPoints, but people were not watching it. They were not engaging with it and not even commenting about it in the online support group. We decided to convert these videos into telenovela. The themes of these videos were already tested, and it's based on focus groups and studies where we asked caregivers, What is it that you need? And we saw the need that they needed more education about pain management for example, self-care.
These were themes that were incorporated into the video episodes. We decided to come up and create a storyline into a telenovela and we are right now creating it, we're almost on the means of filming it and hopefully we'll start showing it and see if there is any difference or not once paired with these comprehensive interventions.
Enhancing Integrated Palliative Care Through Collaboration
LC: That was Dulce Cruz-Oliver, one of the panelists at the session on palliative care held at this year's SXSW Innovation Festival in Austin, Texas. That's where we recorded the interviews for this edition of HealthChangers. Next, I spoke with another panelist, Peggy Maguire. She's the president of the Cambia Health Foundation and moderated this panel.
Peggy Maguire: The panel was a lot of fun. We were surprised at how many people came out to see us at 9:30 in the morning, the first session of the day. And we had a full room, which was great.
LC: SXSW has been around for 30 years. A lot of consumer innovations have launched here, and I've heard you talk about your work in serious illness care and wanting to make sure that all consumers, all Americans understand what palliative care is, and how to have access to quality palliative care. Is that kind of the thinking behind coming to Austin and sharing the work that you and others are doing?
PM: Yeah, exactly. And remember this morning we started our session with two questions for the audience. The first question I asked them was how many of them had been caregivers. And the second question was, did they know what palliative care was? And, it was really great that nearly everyone in the room raised their hand that they had been a caregiver or had known a caregiver.
“What we were trying to do is educate people about the value of palliative care in easing the journey of people with serious illness and their family caregivers.”
And then for palliative care, I'd say about half the room raised their hand and said they knew what it was. And then I asked a follow-up and said, "How many of you think it's hospice?" And a few hands remained up. And I think that what we were trying to do is really to educate people about the value of palliative care in easing the journey of people with serious illness and their family caregivers. Our goals were really to educate people about palliative care and then also to talk about disparities and serious illness care so that everyone would be more mindful of that as they went back to their individual jobs.
LC: Yeah, that's a good point. I've heard a lot here this weekend about health programming and how it’s really focused on solutions, and innovations, and technology to remove or eliminate disparities. What are some of the barriers you see in serious illness care and what can innovation do to address them?
PM: Well, I think this morning again we heard Dulce talk about the use of interpreters for people that don't speak English. And she acknowledged that sometimes the doctors end up talking to the interpreter and not having the interpreter really say what the family is trying to say. That's an interesting challenge I think.
“The more that we can educate practitioners and empower consumers to have conversations about what that consumer wants and what's important to them and their family, the better we can be.”
The health care system is difficult to navigate for any caregiver, but when English isn't your first language, it makes it all the more difficult. I think the more that we can educate practitioners and empower consumers to have conversations about what that consumer wants and what's important to them and their family, the better we can be.
The other point I think that was really important this morning is that palliative care clinicians are trained to communicate differently, and they look at the whole patient and the circumstances surrounding that person's life. They don't just treat the body part. They don't see a person with diabetes and say, "Oh, that person's a diabetic." They say, "That person is living with diabetes and these are the challenges they face getting to the doctor's appointment. These are the challenges they have with pain and symptom management." They really look holistically at the issues that are impacting patients and families as opposed to simply treating a disease. And that's ... I can't believe I'm saying that's an innovation, but that's an innovation.
Innovate Health Care: Improve Consumer Experiences, Empower Patients
LC: I heard you say this morning that palliative care is an innovative disruptor. What else can you say about that? And what was the reaction to that comment?
PM: I think the status quo in a fee-for-service medical system is for 15-minute appointments, treating the disease of a person. When you think about it, we don't really have a health care system. We have a sick-care-system and people often don't seek services until they are ill. The doctors that treat them, treat their condition and not them as a person.
Imagine a health care system where we help people stay well, and we focus on activities that help them live well and stay well throughout the whole course of their health care journey, including when they have a serious illness. That is one thing we've also talked about as really important in palliative care by focusing on what matters to people, instead of solely focusing on what's the matter with them. It helps people live well throughout their life journey including while they're living with a serious illness.
“Look holistically at the issues that are impacting patients and families as opposed to simply treating a disease― that's an innovation.”
LC: You had three amazing scholars, medical professionals on your panel this morning. What were your key takeaways? We spoke earlier with Dulce for this podcast, but, I didn't get a chance to talk with all of them. What were some of the key takeaways you heard from their work to innovate the patient experience and help support families and caregivers?
PM: I think one of the things, just stepping back a minute, is that I'm so glad that we chose to invest in those three individuals and the other 50 or 49 scholars that we have invested in. As I said this morning, our sojourn scholar program is addressing serious shortages in the palliative care workforce, and the capacity of the palliative care workforce. We are investing in future leaders who will not only impact the care that's delivered at their own institutions but will impact the way care is delivered nationally.
Each year as you know, we invest in 12 scholars. We give them a two-year, $180,000 grant to work on an innovative project that will impact the field of palliative care and ease the patient journey, and also support family caregivers. We pair them with a mentor who helps them develop their personal leadership plan, and then we also surround them with a really incredible cohort, and a learning community that helps to challenge them and support them as they're moving forward with these innovative ideas.
“In palliative care we focus on what matters to people, instead of solely focusing on what's the matter with them.”
I think one of the things I reflected on is, yes, we had three amazing scholars up there this morning, but we could afford any one of our scholars up there and they're all amazing, and they are each unique individuals but really doing impactful work and I'm just so grateful for that program, and for the leadership that they're providing to the field of palliative care. I think we don't even know how powerful they are right now. We will see the results of their work and our investment in them a decade from now.
As our population ages and more and more people have conditions that require palliative care, we will be continuing to push the bar for innovation in this space and our scholars will be the leaders in that work, and they will be supporting each other in moving the whole field forward.
LC: Wonderful. Is there anything else you'd like to say?
PM: I'd like to thank Energizing Health for thinking about Cambia in this field of health care innovation and also health equity. And trying to bring a focus to innovation and health equity to SXSW. We've been really pleased to partner with them and appreciate here at SXSW.
LC: Well, thanks for your time.
PM: Thank you.
LC: That was Cambia Health Foundation President, Peggy Maguire. Our final guest on this episode of HealthChangers also spoke at the workshop on Palliative care and caregiving at SXSW. Debra Lotstein is the director of the division of Palliative Care at Children's Hospital of Los Angeles. I sat down with Debra in the busy dining room at Gus's Fried Chicken in downtown Austin.
You were here in Austin at SXSW to talk about innovations and palliative care across the age spectrum. What were some of the key takeaways for you and what did you share about the work that you're doing?
Instilling a Sense of Humanity in Health Care Innovation
Debra Lotstein: The theme of the entire health section of SXSW was around health equity. And we talked a lot, all the three of us on the panel about the kind of support that people who are either dealing with economic, or language barriers care about. The issues that they face, how that impacts their care and also what kind of support they might need. One huge issue was language and people understanding what we're talking about, literally, and the need for well-done interpretation. Because language is of key importance in palliative care.
DL: And the other issue is just around really practical support that people need. I talked about a story of a patient of ours with cystic fibrosis who was prescribed over 20 medications, hours of treatments every day, balancing all of that with having other children, and having a husband who is mostly out of the house. Thinking about the logistics of managing all of this and the potential barriers it caused to the full supportive care that a child could need.
LC: That's really powerful. I appreciated your story on the panel and I wanted to ask you, innovation doesn't always need to be technology driven. Can you share a little bit about your perspective on that especially in the realm of serious illness care? Obviously there probably are technological advancements that can help families and patients, but what are some other things that can innovate the experience of people living with serious illness?
DL: I agree. That was another theme yesterday and really a theme of a lot of the different sessions that they've had here. Some of it's the high-tech kind of digital issues, but then I think of it as an innovation in mindset around being person-centered, child-centered, family-centered. I talked about how that's really needs to be the north star of what we do and particularly when you're taking care of someone with an illness that you can't cure. So, it's not about fixing what they have, it's about making their life as good as it can be. The guiding star needs to be their needs.
“It’s an innovation in mindset around being person-centered, child-centered, family-centered.”
And so that's sort of, I think the innovational mindset. The second really big one I think is around teamwork and that interdisciplinary team-based approach to health care, and whether you're even talking about the palliative care team, but also all the different medical providers and all the different other kinds of providers working as a unit, which we really almost never do. I mean, when we do, it's exceptional and that's kind of sad, right? Those are sort of the non-tech innovations that are really needed.
LC: I think yesterday you also mentioned that interdisciplinary approach even extending out to a patient school, and social services, and the broader community. I thought that was really interesting.
DL: I think that's a really big difference in caring for a child with a serious illness than an adult. That those particular service sectors are unique for kids, right? And that's what makes their life have quality― quality life. Being with their friends, being in their community, being in school.
There's a whole series of systems around developmental services for children who have developmental issues that it just doesn't exist on the adult side. Services need to be tailored for children.
LC: You had your panel, you kicked off the health track programming, the health equity programming here at South by Southwest, and you've had the weekend to attend other sessions around health, and innovation. Could you share a few things that you're taking away from your time here that inspired you?
DL: One of the things that was really inspiring was this session we went to, called “Being Fearless” moderated by Jean Case, the National Geographic Chairman. She interviewed all of these people who made revolutionary innovations in their field big and small, and tried to see what the common characteristics were and really narrowed it down to mapping out goals. That speaks to us in palliative care who are trying to innovate in our field. Being willing to find time in your calendar to work towards these big goals but making time and really taking your big goals and breaking them down into actionable steps and scheduling them in your calendar. This really spoke to me as something that, I should be doing this more often.
“There's a whole series of systems around developmental services for children who have developmental issues that it just doesn't exist on the adult side. Services need to be tailored for children.”
LC: Great. Well, I want to get to my last question because you have food on the table. And you shared with me earlier that you actually spoke to a few folks who attended your session, and I would love to hear their reflections and their feedback to you about how innovations in palliative care can change lives.
DL: A woman came up to me, she was in her early 30s. She was thrilled to be at our session. And she works for a foundation that helps makes investments into health and medical technology. She said, "I was there for myself, not for my work." Because she's caring for two parents that both have Parkinson's disease and she's an only child so it's all on her. She said, "Nobody talks about this in my life. None of my friends are dealing with these kinds of issues, you don't see it being talked about in the general public."
Just being in the audience and hear about these issues that all these people face, whether it's a parent or, a parent of a child, or the child of a parent; it was powerful for her and motivated her to see how we could expand the level of support for people. That felt really good to know that she felt validated.
LC: That was Debra Lotstein. She's the director of the division of Palliative care at the Children's Hospital of Los Angeles. She spoke at a session called “How Innovations in Palliative Care are Changing Lives” at this year, SXSW Conference in Austin, Texas where this episode of HealthChangers was recorded. That wraps up this episode of HealthChangers. You can find more information on all of our episodes at cambiahealth.com. You can also follow us on Twitter, @Cambia. Please subscribe to HealthChangers on iTunes or Stitcher and leave a review. Thanks for listening.
Links and Resources:
- HealthChangers on iTunes
- Episode direct download link
- HealthChangers podcast archive
- Dulce M. Cruz-Oliver, MD, Assistant Professor of the Palliative Program at Johns Hopkins University School of Medicine
- Debra Lotstein, Director of Comfort and Palliative Care Division at Children’s Hospital Los Angeles
- Peggy Maguire, President of the Cambia Health Foundation
- Hospice Caregiving Research Network
- “Caregivers like me” YouTube video (English)
- “Cuidadores como yo” YouTube video (Spanish)
- SXSW Conference and Festival 2019