Too often, health care focuses on “what's the matter” instead of “what matters” when a person is diagnosed with or experiencing serious illness. Palliative care plays an important role in helping people and their families navigate a complex health care system in a way that respects their cultural belief systems.
To try and answer some of these questions, the Cambia Health Foundation created the Sojourns Scholar Leadership Program. It's an initiative designed to identify, cultivate and advance the next generation of palliative care leaders. On this episode of HealthChangers, we talk to two palliative care physicians, Dr. Dulce Cruz and Dr. Justin Sanders, both recipients of the Sojourns Scholar grant. Their research and work focuses specifically on navigating cultural beliefs with education and communication.
Leslie Constans (LC): 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 am your host today, Leslie.
When a person is diagnosed with a serious illness, or experiencing serious illness, what's important to him or her? Too often health care focuses on “what's the matter” versus “what matters,” especially when people and families are facing serious illness and navigating a complex health care system.
To try and answer some of these questions, the Cambia Health Foundation created the Sojourns Scholar Leadership Program. It's an initiative designed to identify, cultivate and advance the next generation of palliative care leaders. In a moment, we'll hear from two doctors who received grants through the Sojourn's program, and recently spoke with Rob from the foundation for this podcast.
For a little background on that conversation, I'm here today with Rob. Hi, Rob.
Rob Goodman (RG): Hi, Leslie.
LC: Tell us why the focus on palliative care.
RG: It's an interesting topic. People are living longer than in previous generations. By 2050, there is going to be roughly 83 million people ages 65 or older. And many in this age group will live for years with a serious illness. The goal of living well with serious illness will create greater demand and need for palliative care.
LC: You recently spoke with two doctors who have specialized in palliative care, and who have also received Sojourns Scholar grants. They both use these grants to look at issues for underserved communities. Can you tell us a little bit more about them, your work, and your conversation?
RG: Sure. Dr. Justin Sanders is a Palliative Care Physician at the Dana Farber Cancer Institute in Brigham and Women's Hospital in Boston. His research looks to improving communications with patients from ethnic and racial minorities about what their goals are, their values, and their priorities.
I spoke with Dr. Dulce Cruz, who is an Assistant Professor of Palliative Care at John's Hopkins. Her work focuses on ways to improve support for caregivers, and in particular, in the Latino community.
LC: That sounds really interesting. Let's take a listen.
“I saw many of them die surrounded by tubes, away from their family, from their loved ones. I started questioning if the care we were providing was good care”
When I became a geriatrician, I also noticed that the patients that I used to take care of in the nursing home, many of them, even with the use of hospice in a nursing home, they were dying alone. I found in palliative care a way to talk with patients before they get extremely physically ill, to be able to talk with their family members. That's one of the things that fascinates me about palliative care, that there is a possibility to provide that type of care.
RG: Thank you. Justin, can you tell me what drew you into the medical profession, and specifically, how you got involved in palliative care?
I subsequently had the opportunity to work in Mother Teresa's Hospice in Calcutta. I learned about palliative care in my first year of medical school, and it was clear to me that that was what I was going to do with my career. I think from the first time that I heard about it, informed by those experiences that I had before, and the realization that this was a moment in life that was worthy of our attention in medicine and that I could be present for.
“These cultural beliefs influence the way family members and patients make decisions. These values that are mentioned in the telenovela are things that are important for providers to keep in mind.”
RG: I would agree that's a worthy moment. It's one that doesn't just concern the patients, but also the family members who are caring for the patient. They'll say, "I know that that's the focus of your research." You found that Latino caregivers often were hesitant to seek help when looking after their loved one at home. You decided to make kind of an educational film, right?
DC: We came up with the idea to creating a telenovela to educate caregivers. I created this telenovela, and I showed it to a group of family caregivers. We did a pre- and post-test and we showed that the telenovela improved the family caregiver's openness to receive professional help.
RG: Let's take a listen to an excerpt from the telenovela. It focuses on a young woman who is caring for her father, who is suffering from Alzheimer's. Her father's doctor suggested the daughter get extra help. In this scene, a hospice worker has come to the house to meet with the young woman.
[Telenovela] Hospice worker: Before I see your father, I would like to talk to you about why I'm here, and to give you some information about the services we can offer you and your father.
Young woman: Sure, to be frank, Dr. Costas was really insistent on you coming here. I made the mistake on telling him that I wasn't getting enough sleep, and that I was really irritable and anxious because I can't leave the house.
Hospice worker: Why can't you leave the house?
Young woman: Because if I leave, Papi will be calling me every hour asking me, "Where are you?" Besides, I don't have anybody that can stay with him that speaks Spanish, or that I trust.
Hospice worker: Why do you think it was a mistake telling Dr. Costas about your anxiety?
Young woman: I don't want to abandon Papi after all the sacrifices he took for us, and putting him in a nursing home would just be betrayal. There’s a saying that helps me understand my role: “God gives you tasks to do, and one must meet them as best as possible at all costs.”
RG: In that scene, Dulce, there are a lot of cultural beliefs that work. Can you explain how these beliefs play a role in palliative care?
DC: These cultural beliefs influence the way family members and patients make decisions. These values that are mentioned in the telenovela are things that are important for providers to keep in mind, not only for Latinos, for everybody, because we can see these strengths even in other diverse groups. To explain it better, I'll try to give you an example.
When you have a person that is struggling with a decision of “Should I take [care of] Mom at home, but I have a back pain, and I cannot lift her. Who will take care of her? I don't want to put her in a nursing home because that will be a betrayal.” This comes into my research.
You put on the top of that the fact that they think that this is a duty, and this is fate. Many people can feel obligated to do this, and even obligated not to allow other people to help. When it comes to providing palliative care, we as providers need to keep all these things in mind to help family members and patients navigate the system, not by canceling these values, by giving them their proper place.
"It's really important for us to have exactly the kind of information that people think we don't want to hear."
RG: I think that makes perfect sense. Switching over, Justin, I understand that you work with patients in under-served communities with an emphasis on the African American community. Again, from what I understand, religion can really serve as a barrier to conversations about palliative care. Can you explain that in a little more detail?
JS: Sure. Religious faith, I think, is complicated. The history of religion for African Americans is complex and goes back to slavery in terms of the importance of the religion in the lives of African Americans in the community. It's really been a source of great strengths as African Americans have confronted difficulties in this country as an effective racism.
Where that complicates things in the clinical room, is when a clinician is wanting to share prognosis, for instance, or to have discussions about the end of life, and what one would choose at the end of life. When someone views their relationship in the world as one that's determined by God, or their place in the world is one that's determined by God, then it can be difficult to communicate a prognosis when someone is saying, "That's really up to God," or, "I can't make decisions in advance because it's not my place to make decisions. Those are God's decisions."
That's the stereotype, I would say. I would say that that stereotype, which has been reiterated in the literature, has kind of had its own effects on how clinicians engage African American patients around these conversations about what's important to them at the end of life, and what decisions they might make.
It's all enhanced by this sort of atmosphere of mistrust, that again dates back to the complex relationship between health professionals and African Americans that started even prior to slavery, I would say—certainly since slavery has been perpetuated in many instances. This sort of atmosphere of implicit bias and performance by stereotypes around religion, and the mistrust that's there as a sort of background, really complicates communication between clinicians and African Americans.
What I will say is that my research really suggests that African Americans are willing to engage in these conversations and want to engage in these conversations, but want to do so in an environment that is characterized by rapport with their clinicians and respect. After the African Americans that we worked with in some of our research really have said, "It's really important for us to have exactly the kind of information that people think we don't want to hear."
“That's something very universal, I think, in the care of individuals. It's not something that the doctors often touch, but it really grounded me in that sort of practical nature of caring for people at the end of life.”
RG: Justin, something you mentioned earlier I wanted to go back to ... you mentioned you worked at Mother Teresa's Hospice in Calcutta. Given your focus on cultural differences, were there one or two differences you noticed between India and the United States?
JS: I think the thing that I was struck most by was the similarities of the caring for people at the end of life, anywhere. Which is to say, in Mother Teresa's Hospice, as a volunteer, you provide medicine, you sit with people, you stretch their legs and arms so that they don't get stiff, you carry them to the bath so that they can stay clean and maintain their dignity.
That's something very universal, I think, in the care of individuals. It's something that I think, for instance, Dulce's caregivers would be very familiar with. It's not something that the doctors often touch, but it really grounded me in that sort of practical nature of caring for people at the end of life.
If I can tell a story briefly that I think illustrates, or has a little bit of how I got into the work that I do in culture. I remember caring for a man at the hospice who one morning disappeared. He had been looked after in part by this very handsome Spanish man, who looked kind of like Jesus with long hair and a beard. Everybody was looking around for this missing man, and we realized that the young Spaniard was also gone.
We all piled outside when we heard that they'd been seen outside, and in the midst of this big Hindu festival that was going on at the time, was this Catholic Spaniard on his knees holding this man, who was dying in the hospice and sort of bringing everybody back inside ... the coordinator and the volunteers were yelling at the Spaniard, "What were you doing? What were you thinking taking this man outside?"
The young Catholic man, thinking that the man he had carried outside was a Hindu and wanted to see the splendor of this festival that was going on outside, said, "I just wanted to show him something special in his last days." The coordinator said, "Well, he's not even a Hindu, he's a Muslim."
It really highlighted for me how the assumptions we make about people as we care for them at the end of life can really impact what we do for them, and can impact their experience at the end of life. That experience has always stuck with me in doing this for care.
“Palliative care is all about talking and communicating with people.”
RG: There are a lot of cultural assumptions that I think we would all have, especially when working in palliative care. Justin, you just mentioned the very good example of your work in Calcutta. Are there any other cultural assumptions you've run across that our listeners might be interested in learning about?
DC: Certainly, Rob. One of them is assuming just because you are Latino that you are Catholic. It's kind of like something that is all over the literature, and it is important that always ... when we as providers find ourselves thinking this way, we have to be aware and stop ourselves from assuming anything about our patient. This is really important. When you enter that with patients and families, it's important that you always ask.
It has to do with everybody. You can have African Americans that completely trust you, which is completely contrived to what Justin was describing. But, you will never find that out unless you ask, unless you inquire about things.
The second thing that I have seen is the belief in a miracle, and that people can just close up on any treatment or they just want to continue aggressive treatment in hope for a miracle. This is something that may or may not trigger a lot of difficulties for the health care team, because the family or the patient that has trouble coming up with the fact that they are dying, so this may be seen as denial or that the family is not realistic enough.
I'll give one example of this patient with advanced ovarian cancer, even though she has palliative chemotherapy, it continued to progress. And she would not enroll in hospice because she was not ready to die. This brought a lot of distress in the team, and they ... how can I say this ... really never understood why she insisted so much on continued therapy, even though it was making her sick.
This patient has broken all the statistics by surviving four years of this disease. Proving to herself that they are wrong, they were saying that she was going to die in a few months, and now she has lived four years. You can see that there are many things that can influence that are engrained in the culture. This specific patient that I'm just telling you about, she's Latina.
It was really hard to get her to understand and to get enrolled in hospice. At the end, she did. She did it because she needed extreme pain medication, but if it wasn't for this need, she would have not come to terms with the fact that she needed this type of end of life care, even though she still says that she's not ready to die. Does that make sense?
RG: Yes, that's a beautiful answer. Justin, I come back to you since you've had a chance to think about it. Any examples you'd like to share?
JS: Yeah, I really appreciate ... I think the most important thing I could say is to emphasize one of the things that Dulce said about culture. I think it's assumed that because of the stage of life that we're talking about in palliative care this sort of moment as we approach the end of life, that somehow, culture plays a significant role there. Whether that's culture that's expressed predominately through religion, or through community or some other ways.
I can't emphasize how much ... that while a person is of a culture, the degree to which that culture is expressed is highly variable in any individual, and we all are also part of multiple cultures. I think it puts palliative care at an advantage in some way in working with people from different cultures, because our approach is really one around sensitivity to what is most important to the patient.
While I wouldn't point to any one example necessarily, like miracles ... I wouldn't add to that list necessarily, I would say there are many assumptions we make about people in their care as we approach them either because of how they look, or because of where they're from, or where we think they're from. Really, the best thing we can do, and again, to emphasize Dulce's point, is to ask people what's most important to them and not make assumptions because of what we think we know about them.
DC: I will say that palliative care is all about talking and communicating with people. I always like to tell my fellows in training, what distinguishes palliative care is communication intervention … to what Justin was saying.
RG: You know what strikes me as very interesting is that you're both very accomplished physicians, and you're both very deserving of the Sojourns Scholar grant. I'm curious to know, and Dulce, I'll ask you first. How did you feel when you learned you'd received this grant?
DC: I was really happy and surprised, because I really honestly didn't expect to get it.
JS: I felt completely shocked. I can feel right now talking about it like I felt in the moment that I heard. It took me about a few weeks to actually believe that it was true.
RG: That's nice to hear. I'm curious ... sort of at the 10,000-foot level, and not getting into the details of the program, what did you hope this grant would enable you to accomplish?
JS: I think there's a practical aspect of wanting to do a certain amount of work, or a certain project and having someone cover your time to do that. I think that's an obvious practical thing. I think ... I feel very passionate about this field, and have wanted to have a leadership position in this field. I think something that the Sojourns Scholar Program does for us, is it gives us a level of exposure in some way, and an endorsement about the work that we're doing. It puts us in a place to develop our leadership capacities and use them as this field continues to expand.
RG: Dulce, from your side, what did you hope to accomplish when you found out you were awarded the Sojourns Scholar Program?
DC: What's funny ... the consequences of obtaining the award were much more than my expectation. Just because of the accepting that Justin just mentioned, it gives you such an exposure in terms of people know in your region who you are, people know what you are working on, and then also nationally gives you some type of recognition that honestly I would have never looked for. Since it happened, it's been amazing.
“Feel free to request palliative care. And if the provider says, ‘You're not dying,’ tell them, ‘Well, I know I'm not dying. I want quality of life.’”
RG: The last question I'd like to ask both of you ... Justin, I'll start with you ... what would you recommend to our listeners to advance palliative care or to learn more about the cultural differences within palliative care?
JS: I think the thing that I would say that if you are a person who has a serious illness, or a loved one that has a serious illness, and you or they are not seeing a palliative care specialist, I think we can confidently say that you or your friend or loved one is not getting the best care possible.
I think that palliative care helps to provide the highest quality care for patients at any stage of serious illness by attending to their quality of life and that of their families. That's irrespective of cultural difference, I would say. I think that palliative care has the capability to be a tool to address health and equities that exist because of cultural difference.
My hope is that over the upcoming years, we can start to show that that's actually true.
DC: To follow up on what Justin said, I will say feel free to request palliative care, and if the provider says, "You're not dying," tell them, "Well, I know I'm not dying. I want quality of life. I just want help in living with this deceased, or in coping with what I'm going through."
RG: I'd like to thank both of you today. Dr. Dulce Cruz, and Dr. Justin Sanders for joining us in our HealthChangers podcast.
DC: Thank you, Rob.
JS: Thanks so much, Rob. Thanks, Dulce, for your great work.
LC: 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, also please subscribe to HealthChangers on iTunes or Stitchers, and leave a review. Thanks for listening.