Improving Advance Care Planning for Latinos with Cancer: A Podcast with Fischer and Fink
In this week's GeriPal podcast we talk with Stacy Fischer, MD and Regina Fink, RN, PhD, both from the University of Colorado, about a lay health navigator intervention to improve advance care planning with Latinos with advanced cancer. The issue of lay health navigators raises several issues that we discuss, including:
- What is a lay health navigator?
- What do they do? How are they trained?
- What do lay health navigators offer that specialized palliative care doesn't? Are they replacing us?
- What makes the health navigator intervention particularly appropriate for Latinos and rural individuals? For advance care planning?
Eric and I had fun singing in French (yes French, not Spanish, listen to the podcast to learn why).
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Eric: Welcome to the GeriPal podcast. This is Eric Widera.
Alex: This is Alex Smith.
Eric: And Alex, I'm really excited about today's podcast. Who do we have on our Skype connection?
Alex: Today, we have Stacy Fisher who is a GeriPal physician and researcher at the University of Colorado as well as Regina, I think, who was recently promoted to professor of medicine. Congratulations. The first nurse and researcher at the University of Colorado to be promoted within the school of medicine to the rank of professor, I understand.
Alex: Welcome to the GeriPal podcast. Both of you.
Stacy: Thanks so much for having us. We're thrilled to be here.
Eric: I'm really excited to talk about your recent JAMA oncology paper about a trial of a patient navigator intervention to improve palliative care outcomes in Latino adults with advanced cancer.
Eric: But before we kinda jump into the meat of our podcast, we always start off with a song request. Do you got a song request for Alex?
Stacy: I do, and I just ... Alex, I want you to know you narrowly avoided having to sing some Diana Ross. We just saw Diana Ross last night, but she deferred. So she was actually amazing. She was at Red Rocks and she's celebrating her diamond jubilee. She's 75 years old.
Alex: Good venue. I could not approximate. That's great.
Eric: So you got an easy one for Alex instead?
Alex: Yeah. Instead.
Stacy: We have an underhand pitch. It's the Les Champs-Élysées just go back to your high school french.
Alex: That's pretty far. Sophomore year high school French.
Eric: It's going to be interesting.
Alex: And what's the story about this?
Stacy: So, we just got back from our family vacation. We were in Switzerland and France and we had rented a car to go to the coast of Normandy and we had the navigator all set up and she took us down the Champs-Élysées and before we knew it after one wrong turn after another, we were going around the Arc de Triomphe with 800 cars
Eric: Like a European vacation.
Alex: Right. And what did the navigator say? She said ...
Stacy: She said take the sixth exit in the round about.
Alex: 'Cause that round about has like 12 exits.
Stacy: Buses are coming at us. Motorcycles are weaving in and out-
Alex: That's great. And you listened to this song and you were like ... had this song on repeat.
Stacy: We played it for him in honor of his successful navigation.
Alex: From that movie ... Darjeeling Unlimited.
Eric: Wes Anderson.
Alex: Wes Anderson.
Eric: All right Alex. Give us a little taste.
Alex: Here we go.
Stacy: That was wonderful.
Alex: Anybody who speaks French out there, I apologize.
Eric: You can give feedback to Alex in the comment section of our GeriPal blog.
Eric: What a beautiful intro to the topic at hand, which is navigators and going around the circle in Paris.
Eric: But before we kind of go into the article itself and kind of what you did, how did you get interested in this subject?
Stacy: Before I started my fellowship, I needed a little bit of a gap year. I had gone straight through. I started residency when I was 23 and I just needed a break.
Stacy: And so, I went down to Central and South America and traveled. I studied Spanish in Guatemala and became really interested in the concept of the health, the community health worker, improving outcomes, and in areas of social justice. But since I was a palliative care physician, I needed to merge those two topics and the navigation for palliative care outcomes seemed the perfect path towards that goal.
Eric: Right. Go ahead, Regina.
Regina: And Stacy and I have been doing some collaboration for probably the last 10 years. My background as a nurse is also working in oncology, so I knew a lot of the cancer clinics all around the state. Plus, I live rurally, so I live up in the mountains and commute down to Denver.
Regina: So, the rural connection was really important and I've done palliative care needs assessment of rural hospitals. So, the rural component to this navigator intervention was important.
Alex: Now what is a patient navigator?
Stacy: So, there are many definitions and sometimes within a healthcare system that person may carry that moniker, but may be a nurse or a social worker and in our vision, that person is a lay navigator. And that tracks with Dr. Harold Freeman who started the first patient navigation program up in Harlem. They were lay people from the community working with patients and families to address barriers to care.
Eric: And when you say lay people mean not nurses, not social workers?
Stacy: Not nurses. Not social workers. They may not even have a health background.
Eric: And what's the role of the navigator? What in general when we talk about that ... like what do they do in general? Not just in your intervention?
Stacy: Right. In general, I would say it's that addressing the barriers to care and those barriers may be cultural, maybe educational, maybe logistical things like transportation or making appointments. Kind of figuring out a system. But it also may be just understanding the benefits of a certain intervention.
Regina: And in the past, navigators have been really used for prevention, detection for reporting lab results, working with patients to get them into the system. And our ideas were to use a patient lay navigator to improve palliative care outcomes.
Eric: And it sounds like they do need to be trained. So these are not just people right off the street. They're coming in and they're helping patients but you actually have to do training to be a navigator. Is that right?
Stacy: Extensive training both in the fundamentals of patient navigation and it ... for the purposes of our intervention, in palliative care related content.
Alex: So, let me get this straight. This is somebody from the community who you train to to come to your house or what do they do? Do they go with you to appointments? Like what is sort of the nuts and bolts of what they would actually do?
Stacy: Specific to our intervention, they meet patients at their homes and deliver intervention content and a lot of that is educational yet they also work with patients using motivational interviewing as a tool, for instance, to activate them and advocate for them.
Stacy: Now, a patient may ask them to come to the appointment and that happens throughout the intervention and if a patient asks for a navigator to come with them, then the navigator will come to the clinic appointment. They may help with some translation or just help assure that there is understanding. So the navigators may employ the teach teach back intervention or tool that we see commonly in health literacy interventions to ensure that the patient is understood what the clinician has told them.
Regina: So, our navigators are community based and we hired three navigators for our study. One on the western slope in Colorado. One in southern Colorado and one in Denver. All were enmeshed in the community. Many of them had healthcare backgrounds. Some had been involved with previous research studies. Others have been certified nursing assistants or medical assistants. So, they did have a little bit of healthcare knowledge.
Regina: And then we trained the navigators by having them go to ELNEC, End of Life Nursing Education. A Colorado patient navigation training, which is three days. In addition, a motivational interviewing education seminar for two days. And then we had them shadow palliative care specialists, interdisciplinary teams in the inpatient outpatient hospice and home care settings.
Regina: And then we provided enrichment for the navigators to related to palliative care. They completed their own advanced directive. We talk to them quite a bit about how to do advanced care planning. How to screen for, educate about pain and symptoms, and how to talk about hospice.
Eric: That's a lot.
Alex: That's like a mini palliative care fellowship. That's amazing.
Eric: How long did the training last for?
Regina: Takes place over somewhere between two and three months depending on how quickly they can absorb the content. And the other thing that navigators have to do is go through IRB training because those navigators are consenting our patients during the baseline visit. Talking to the patient about the study and explaining to them what's going on. Doing an informed consent as well. So, they had to go through training.
Alex: That's great. So, I guess this would be the point where I say, "We're all physicians and nurses who ... you know have palliate ... extensive specialty training in palliative care." Why on earth would we train lay people to do what we do? Isn't that just creating competition for ourselves?
Stacy: That's a great point. So, when we think about palliative care, we think about primary palliative care and tertiary palliative care and I think of the navigators and where they fit into that spectrum is actually pre primary palliative care.
Stacy: As we all know, there are not enough specialists to see all the patients in need, especially in rural areas. And so, if a patient can work with a navigator and be primed to advocate for themselves that when they see their oncologist or they see their clinician in the clinic, they can receive better palliative care because they're able to advocate for themselves. They're more activated. They understand and have been some of the myths and barriers around some of the things like opioid use for pain for instance, have been addressed and they understand those things better.
Alex: That's great. So-
Regina: Well, and the other thing too is that our navigators are bilingual and bi cultural. They're embedded in the community and they are like rock stars in the community. Wherever you go with them. If you go to the local hardware store or you go out to lunch with them, they know everyone in the community. So that's why we wanted to use lay patient navigators that had relationships already with people in the community and many of the rural communities are very small. So everybody knows everybody else.
Eric: Tell me about the communities that you are trying to focus on in this study.
Regina: So, we had a variety of different sites. We had, first of all in Denver, a National Cancer Institute Comprehensive Cancer Center, a safety net hospital and a community hospital.
Regina: And then on the western slope in Colorado, which is over by Vail area, Aspen, some of those key areas, we had three to four hospitals and clinics. Very rural. Maybe ten thousand, fifteen thousand people living in those communities. And the one navigator who lived over there had been living there for 30 years.
Regina: In southern Colorado, a very small community where the Latino population was about 45 to 50 percent Latino. So these navigators were very enmeshed in the community for many years.
Eric: And the patients that you enrolled, who are they?
Stacy: Patients were Latino adults. So, they had to self identify as Latino and they all had stage three to four, three or four cancer. So, advanced cancer who are seeking care at one of these cancer centers throughout the state.
Alex: Could you say a little bit more about why focus on Latinos for this particular intervention?
Stacy: What we know is that culture is important and Alex, you've done some of that seminal research demonstrating that we know that there are health disparities in the Latino population and so ... incorporating some of the core values such as the importance of family, the importance of a trusting relationship, confianza. The important of personalismo and integrating those values into an intervention.
Stacy: I think this intervention could easily be adapted to other underserved populations. We happened to pick Latinos because that's the population that predominates in Colorado and that's a good starting place for us to begin our work. But I really do think that that the navigator intervention could be adapted and is being adapted in other underserved communities. But by taking several years worth of quantitative and qualitative work on what the values are, what the disparities are that we're trying to address and adapting them into the intervention was sort of our driving process.
Eric: And what, what were you hoping to achieve?
Stacy: Improve palliative outcomes and specifically, we were looking at increasing advanced care planning, improving pain and symptom management, and increasing hospice utilization of the stay and enrollment.
Alex: So this was a randomized trial, so how many patients did you enroll and what was the control? What did the control condition consist of and what did the intervention condition consist of?
Stacy: So, we enrolled 223 patients across the state of Colorado. All Latinos. Mostly with stage four but some stage three cancer, solid tumors, and hematologic malignancies. And we really took all types because of the ... to recruit that kind of population, narrowing it any further just makes enrollment impossible.
Stacy: And we randomized them and it was stratified by site to our enhanced usual care. And within the enhanced usual care group, they received a packet of educational information. Culturally tailored written materials that were all written at a fifth grade reading level. Either in English or in Spanish. Whatever their primary language was. The intervention materials focused on pain and symptoms. On what is hospice. Advanced directives. They all included Rebecca Sudore's adapted ...
Regina: Prepare for your care.
Stacy: Well, advanced directive. Advanced directive that she developed for low literacy populations. In our intervention group, they received the same packet of information in addition to approximately five home visits from one of the patient navigators from their area. And the navigators focused on the content in the packet and worked with patients around completing advanced directive. Assessing and screening for symptoms and talking to them about what hospice care is.
Eric: So what'd you find? Did it work?
Stacy: So, did it work? Like many of these complex interventions, yes and no.
Alex: Right. Yes and no. Right.
Stacy: So, the navigators were highly effective at improving advanced care planning. When we went back and we did blinded chart reviews looking for advanced directive documentation in all the patients. What we found was that there was almost twice as many patients in the intervention group as compared to the control group had completed an advanced directive. So it was like 73 versus 40. So a pretty substantial difference.
Stacy: It was almost difficult to stay blinded because we saw ... when we would see our advanced ... the adapted Rebecca Sudore's adapted advanced directive. We almost knew that they were in the intervention group. 51 patients in our intervention group completed them. No patients in the control group ever completed and submitted that advanced directive. It was almost hard to stay blinded.
Stacy: We also found that their overall symptom reports in the quality of life subscale were better in the intervention group. In terms of pain, we found that patients in both groups had fairly low pain, which was a great finding. Good for the patients.
Alex: Right. That's a good thing.
Stacy: Good for the patient. You know, there was about three on this one to ten scale in both groups and about 80% of patients in both groups used hospice care at the end of life, which is-
Alex: 80% that's huge.
Stacy: It's really, really high.
Eric: Among Latinos. Yeah.
Stacy: Yeah. Among Latinos. I mean, so I think we ... we're not sure what happened. Colorado is either just that good. We don't have ... we have neither disparities and have really high hospice enrollment rates, but it's also possible that amongst these small rural clinics, we may have had some serious contamination problems that once we were providing-
Alex: I'm glad you brought up that word. Yeah. Could you explain what the contamination is? Like what is contamination? For our listeners who may not be researchers.
Stacy: Right. So contamination that patients in the control group that somehow we fundamentally changed something, within the clinic milieu that providers were then able to ... were also more activated and were able to talk about hospice and some of these difficult topics with our control patients.
Stacy: More easy that patients start coming in and from the intervention group and talking about hospice and providers are suddenly thinking like, "Oh. Well, I can talk to Latino's about hospice. This is okay. They really like it." And suddenly, they start having better and more effective conversations with both groups and that's certainly a possibility.
Alex: And this was potentially an issue because in these rural areas you often had one provider ... one oncologist and you couldn't randomize by oncologist. Is that right?
Stacy: That's right. Exactly. There were about four of the clinics that were so small that that one oncologist and or nurse practitioner, advanced practice provider, were seeing that patient.
Eric: So does this argue for the importance of a navigator or does it argue for trying to stimulate these discussions about with oncologists and nurse practitioners that we can have these discussions about hospice as a way to improve overall numbers of usage of hospice near the end of life, at least for people with advanced cancer?
Stacy: I think it's a great question. I think there are study findings, I would argue, really do describe a certain role for a navigator. Completing an advanced directive takes a lot of time. We know that and in a busy oncology practice it still may not be addressed in the way that we would like.
Stacy: And so, I think we made a case for a navigator being very effective in helping patients through that. In terms of talking about hospice, I think it's less clear. I do think it's important to have activated patients and clinicians in talking and ready to talk about these topics.
Regina: But I also think too, it's that trust issue with the navigator and the navigator establishes trust and rapport, which is huge. Talking about personal values and preferences. Something that takes time to do and to do it in a home setting is very helpful and I think that that's also what made this successful for advanced care planning.
Eric: And did you look at other outcomes? Because whether or not somebody used hospice for a day versus hospice for two months before they died, is probably a more important metric than whether or not they used hospice at all. Did you see any differences there?
Stacy: We looked at length of stay and they were ... there were no statistically significant differences and both groups were around 55 days, which is also fairly long.
Alex: I'm just blown away by these hospice findings.
Eric: Whatever you guys are doing in Colorado-
Alex: Something's working or it could be, you know, the patients who agreed to be in the study, for example or who were referred and then agreed to be in the study, may have been more amenable to hospice. It's possible.
Alex: I do note that a high proportion of the patients in the study had gastrointestinal cancer and a low proportion had lung cancer, I believe, relative to sort of national rates of those conditions. I think lung cancer is usually number one. Although, maybe that's not true. Maybe if you combine all gastrointestinal together, then it approaches lung cancer, but it looks like rates are about three times as many GI cancers as lung cancer.
Stacy: We certainly see, I think in Colorado, and this is just based on my clinical experience, especially patients presenting with very advanced disease with gastrointestinal cancers within our population here and especially specifically our Latino population. So, that that may be part of it.
Stacy: But the question, I want to pick back up a thread that we were talking about. In terms of other outcomes, so we'd also looked at process outcomes and we did find very different, pretty substantial differences between patients in their understanding and willingness to use hospice when we compare control group patients and intervention group patients. So we asked, "Would you recommend hospice for a loved one?" And almost twice as many patients in the intervention group, almost 80% said yes compared to almost 40% in the control group.
Stacy: And a similar pattern was seen in when we asked the question, "Would you consider using a hospice for like for yourself?" And so, that's a very interesting finding and I don't know how it all fits together with the actual use of hospice in our population. And it may be that Colorado just is like that good. I don't know. These rural centers, the patients and the clinicians have a very close relationship.
Eric: And did these patients have access to specialty palliative care and was there any change in palliative care outcomes like as long as potentially like use of palliative care, specialty palliative care?
Stacy: So, we started this study in 2012 and we finished data collection in 2016 and at that time there was very little outpatient specialty palliative care across Colorado. In these rural communities, there was nothing. Non-existent.
Stacy: Within the university system there, we had our inpatient consult service which was fairly robust, but we didn't specifically look at palliative care use. But what we do know is that across the board, most patients did not have access.
Regina: The only real patients who had access to palliative care were patients in the Denver area at two of the hospitals. Even the third hospital in the Denver area was just growing palliative care at that time.
Alex: So, I wonder how you put these studies in context. Here, you have a study with mixed findings in Latino lay patient navigators for adults with advanced cancer in Colorado. And I'm wondering how you situate this in this sort of greater context of lay health navigators in palliative care.
Alex: I'm thinking of Manali Patel, for example, at Stanford who's done some terrific work with veterans and cancer. She's an oncologist. Or other people who are very interested in this health navigator concept in palliative care.
Stacy: I think what I've come away ... and where my thinking is around a lot of this is that there are certain ... that navigators certainly have a certain scope. Where at least what we found, where they can really be effective.
Stacy: I think the other both challenge and importance is that how dependent these kinds of interventions are on the navigators themselves. And certainly, through the body of our research, we have had highly effective and less effective navigators. So, when you look at kind of like what that looks like overall on average, I think we're seeing some of that. The impact of that.
Stacy: And the other, I think the other question is, outside of the cancer population, what are the benefits of navigation? And that's a question we're trying to answer with our ongoing work.
Alex: Right. Because I think in Manali's work, she showed actually positive outcomes in terms of symptom control and et cetera. So somewhat different findings.
Alex: And there are differences in the population of veterans versus non veterans and et cetera. And like yours is Latino's and hers not ... in California and Colorado are different states. But I like what you were saying, Stacy, about how, you know, what is the role for Latina ... for health navigators and what ... when do we need to refer patients to specialty palliative care? Like what tasks can they take on and disseminate and what tasks are they not able to achieve? And that's kind of the outstanding question I think at this point. Does that sound right?
Stacy: I would agree. And kind of finding the triggers and I would also argue in our patient population, I don't think that patients ... even though we didn't show an impact on the pain management, for instance, I think mild pain is often very difficult to make better.
Stacy: And so I ... and kind of looking at that within that context as well. Knowing that maybe that the target population for those navigators also matters and that if we're targeting Latinos with advanced cancer, that's fine but maybe we need to look at patients that have higher need.
Stacy: And I think we know a lot of interventions where patients with low distress or low symptoms come in and it's very hard to show a benefit. So, I think that's something else that we are considering in some of our future work is that additional screening for high distress or high symptom burden.
Regina: And I think for the most part, the navigators were really supportive. Not only of the patients but family caregivers. Family caregivers were not enrolled in this particular study and our work now, we are enrolling family caregivers because the family givers ... caregivers said they received support more so from the navigators than they thought they would.
Eric: That's fascinating.
Alex: So, next steps for this research?
Stacy: So, we are in entering into our fourth year of a another randomized controlled trial looking at the navigator intervention in non-cancer advanced serious illness, Latinos, across the state of Colorado again. Slightly different geographic distribution.
Stacy: We are pilot testing a adapted intervention for patient caregiver dyads with advanced dementia, Latinos with advanced dementia, in Colorado, using the adapted version of a lay navigator intervention. And we are working with David Bekelman, another palliative care researcher, looking at a combined patient navigator psychosocial counseling intervention.
Stacy: And so, kinda coming back to that idea of what is within the scope of a navigator? Well, a navigator can really help with advance care planning, but they cannot address depressive symptoms, but a counselor could. And so, having a stepped intervention that addresses a psychosocial distress.
Eric: And when we think about the value proposition for a healthcare institution or oncology clinic, what is it for a navigator? What's the case? What's the pitch to bring in navigators to these clinics in your mind?
Regina: Well actually, one of the rural clinics who had participated in our study, hired a patient navigator, a lay patient navigator, to assist them with cultural diversity and translation and support for their patients.
Alex: And I wonder what the health systems want to see reduced acute care, highly expensive service use for example, like reduced ER visits, hospitalizations, hospital length of stay.
Eric: ICU use.
Alex: ICU. Right. Right. And some accounting of the costs it takes to train the health navigators and keep them employed throughout the course of the ... well ... keep them employed. Period. Yeah.
Stacy: Right. And I ... when it comes to acute care utilization, our research did not ... we did not show big differences between the two groups. Again, however, I think when you look, especially at some of the larger cancer centers, we have to serve a diverse population. And I think all, especially like at our comprehensive cancer center, we're ... it's important to engage a diverse population. To serve the community in which you are based in.
Stacy: And so, I think part of it, while there may not be a utilization argument, I think there is an argument in engaging, diverse underserved populations and ensuring that they get high quality care as well. And I think that's where that lay navigator and especially the bi cultural bilingual piece, I think where the case is made for that person.
Eric: Great. I want to really thank you. We're going to have links to your article on our GeriPal website along with the show notes. With that, I want to again, thank you for joining us. I wanted a little bit more of Champs-Élysées.
Alex: Thank you, Stacy. Thank you, Regina. That was fantastic. Really appreciate you joining us today.
Stacy: Thanks guys. Thanks for having us.
Eric: Before we leave. We got to hear a little bit more about this navigator issue.
Stacy: Woo hoo!
Eric: I don't sing often, but when I do ...
Alex: Yes. It's totally worth it.
Eric: I want to thank both of you joining us on this call. I want to thank all of our listeners. If you have a moment, please, we rely on everybody to share our podcast with their friends and their family. Just to get the word out. So, if you can take a moment, just send an email to your closest friend and let them know our podcast is there.
Alex: And rate us. Give us a thumbs up. Or if you're not going to give us a thumb's up, don't rate us [laughter]. We look forward to talking to you next time. Bye.
Eric: All right. Bye everybody.