Tom Lee: This is Tom Lee on behalf of NEJM Catalyst, and I’m speaking today with Dr. Rodney O. Tucker, an internist who is a Director of the University of Alabama at Birmingham UAB Center for Palliative and Supportive Care. He’s doing, with his colleagues, some really creative work, and that’s what we want to share with you today. Rodney, you and your colleagues are gearing up to do culturally sensitive tele-consults in palliative care. Before we talk about your group and what it means to do this by tele-consult, can you start with the basic question I’m sure many of our colleagues will be wondering: What the heck is a culturally sensitive palliative care consult?
Rodney Tucker: Well that’s a great question, Tom. And let me start off by thanking you and Catalyst for the opportunity to share some ideas and conversations on this topic of cultural competency and sensitivity, and our work in particular. When you say cultural competence or cultural sensitivity, as you all know it’s a broad term. And the first thoughts that many individuals have go to matters particularly of country of origin, say race, and maybe gender, in broad terms.
And we know that the first thoughts when we use the words “cultural sensitivity” and competency — and of course we’ve talked a lot about that in our various institutions through the years as we talk about patient family-centered care as well — so what we think of in palliative care particularly is when you think of what palliative care means to individuals, their first thoughts maybe go to serious illness, maybe hospice, and end-of-life care. And particularly here in the South we say then, well, this model of care called palliative care, how can we deliver that to rural nonurban settings here in the South?
So that’s where the overlay, particularly in the emphasis on cultural sensitivity, really comes into play, and again, particularly in our geographic area. So a culturally sensitive palliative care consult basically assumes the frame that we as providers are there to meet patients where they are, and that is heavily influenced by their culture, or their cultures plural. As you know in palliative care, from your work and [that of] many others through the years, we believe in caring for patients’ suffering, in really any or all of the domains — physical, psychosocial, emotional, and spiritual — all of what, as you can imagine, can have different cultural connotations, if you will.
So you layer those considerations of providing palliative care in the domains of suffering, lay that on top of how patients and families make decisions about particular treatments or make difficult decisions about end-of-life care, et cetera, and what they need, and you can imagine that taking into account the cultural milieu of the family, it’s really important that we acknowledge that in order to do what I mentioned earlier, is being there to meet patients where they are. So basically, a culturally sensitive palliative care consult takes into account those particularly cultural barriers intentionally, if that makes sense.
Lee: Well, we can get a little bit more specific now by focusing a bit on your group at UAB and how you do your work. So is palliative care different in Birmingham, Alabama, than it might be in Birmingham, England?
Tucker: Well, I would say that theoretically, or let’s say philosophically, the model of care in terms of what I mentioned earlier in terms of addressing the four domains of suffering, [is] probably not very much different. But delivery, and what I’ll say [is] the operationalization and the way that you are able to establish rapport and trust with patients, can be very different in Birmingham, Alabama, versus in Birmingham, England. For example, we teach in our residency programs, we teach our learners who are exploring opportunities in palliative care that we believe patients and families make decisions on what I call the five Fs.
And those five Fs are the facts, which is what we as health care providers are very comfortable providing to patients and families — the facts about their disease, their prognosis, et cetera. They also make decisions based on fears or hope, they make decisions based on financial ramifications or financials. They make decisions many times influenced by what I call “framly,” which is friends and family. And then particularly, they make decisions that are influenced by faith. And in the South particularly and in many areas of the country, the faith and the religious traditions and systems are very important in decision-making.
And at any time, and to different degrees, when families are making decisions about serious illness care, end-of-life care, we have to be cognizant that all of those five Fs are not equal. And in the South particularly, and in our work, we’re finding that the establishment of rapport and relationship that acknowledges faith tradition, that acknowledges the cultural sensitivities in which we live, is really important in order to really meet the patients where they are.
Lee: Well, can you give me an example of how a palliative care consult influenced by the faith of a patient went?
Tucker: In many cases we will frame a conversation and ask patients, give them information, do our typical biomedical model where we ask them what their understanding of the disease is, understanding of what the prognosis is, and as we’re having that conversation and giving what I referred to earlier as the facts, we uncover that faith-based language becomes very much a part of the way that families talk about a particular prognosis.
In many of our families we use phrases [such] as, “we have strong faith,” “he’s a strong fighter,” “we believe in God,” “we believe in divine intervention,” “we believe in miracles,” “it’s in God’s hands.” And so we find that that faith-based language, if it comes out early in conversations with families, is really important to explore with them. And so as part of the palliative care, before we really start talking about next steps and plans, we have to uncover what’s important to those families.
And we’ll ask questions like, “What gives you strength? What’s your support? What are you hopeful for?” So if they’re hoping for a miracle, we can share that, but we can also say, “Well, let’s hope for multiple miracles. Let’s hope for things like, your mother’s pain can be controlled. Let’s hope that we can make sure that she’s cared for in a place where you all can be together, per her wishes,” et cetera. So it’s really the framing and the process of the consultation that I think is when it becomes, quote, unquote, “culturally sensitive.”
Lee: Well, that’s certainly wonderful work, and I’m so glad you’re doing it. But it’s so hard to do anywhere, it’s a game-changing type of work. Why are you thinking of doing this work beyond the walls of UAB?
Tucker: Well, that’s a great question. We’ve been committed at UAB, and of course nationally, we all know of the tremendous growth of palliative care, particularly in our acute care settings, and our academic environments, and our VA hospitals. But what we’re finding, and I heard this recently from someone, is that it’s been said that you’re lucky if you’re able to be in a place where you have access to palliative care. And if you listen to the words of Diane Meier and some of our leaders in the field of palliative care, how can we convert that? Well, you were lucky to be where you could get these types of specialty services and have your wishes honored, et cetera.
And how do we spread that, and how do we scale it? Living in Birmingham, Alabama, which is a fairly large metropolitan area with an academic medical center, UAB, we have a robust program. But we have so many areas throughout the South, and the Midwest, and the West that are nonurban areas where access to the specialty services is not available.
So, how do we spread ourselves beyond the walls, you said, of our organization? One of the ways that we feel is coming in the future is through the use of virtual consultation, telemedicine, tele-coaching, and these types of digital platforms that can spread the expertise that we have, almost like a hub-and-spoke model, so that we can be in places that may be remote, where we can’t be physically.
Lee: So now we get to the question that was suggested in my first sentence, which is, how can you do this by tele-consult? It’s challenging enough for me to do it when I’m face to face with people.
Tucker: Right, right. Well, clearly the move toward telemedicine, and virtual consultation, and the different platforms and technologies that allow assessments to be done and care to be delivered outside of the traditional bedside or clinic-side face-to-face, human-to-human contact, obviously there are challenges. But what we’re doing now is trying to build the technology and build the infrastructure so at least from the standpoint of how we can interact with a provider, say, or a nursing team, that is in a conference room with a family struggling to make decisions, that we can be part of that process.
And so I can’t say that the evidence base tells us exactly how we can do that, but we know that with these technologies that we’re developing and that are rapidly progressing, there are ways. And that’s what we’re interested in exploring is, how can we do that, and how can we have this specialty-level expert basically participate in the room although they’re not physically in the room?
And the other outcome — I think that would be a secondary outcome — is that the more that you have providers who are local, and let’s say they’re nurse practitioners in health department clinics, let’s say there are hospice providers who may be in the home or who may be in their interdisciplinary team meetings, who really feel like that a virtual consultation with an expert who’s in Birmingham, or who’s in Chicago, or who’s in North Carolina, could really complement the way that they’re discussing their patient and developing the care plan.
Well, that has a spread effect to it that we’re basically also teaching as we go. And we’re teaching some of the specialty care techniques to those who are more at the ground local level. Does that make sense?
Lee: Absolutely. So what’s your bottom line? How is it going so far? I know it’s early, early, early, but your take?
Tucker: So far the primary program that we’re doing through our research study has been tele-coaching with patients and families, particularly around heart pain. Quite a bit of attention to not only the patient but the family and the caregiver, and this is through the work of Dr. Marie Bakitas here in the School of Nursing, and we’re finding that that’s going very well. So that is patients and families all over the State of Alabama, including that the patient may be in one location but the caregiver or the primary family member may be 60 miles away, and so we have structured protocols and structured coaching. This is all via telephone at this point right now.
And we’re finding that that’s going very well. So that’s empowering and engaging the families and the patients to really have a partner in their care that’s not face to face at the moment, but it helps to guide them and to some degree navigate their care, so we’re supporting them virtually. We are right now, as you said, starting out building the infrastructure, because it has to be a partnership between the experts in the university and our health departments. What is a little unique about our state, is that we’re setting up the ability to do virtual exams and virtual office visits in every health department in the State of Alabama.
So a patient, a provider, a nurse practitioner, a family could be in a room that’s set up with the technology so that we can virtually consult with them, see them via Skype or other technology. Right now it’s going really well building the infrastructure with different partners, like I said, the university, the health departments, schools of nursing, hospice organizations I think ultimately would be very key partners, because they are in the communities already providing care.
Lee: Well, I’d summarize by saying, palliative care consultation really is an idea whose time has come, teleconsultation is an idea whose time has come, and putting them together makes perfect sense. But it hasn’t been done before, and I think that we’re all really grateful to UAB and to you and your team for pioneering this work, and we are very much looking forward to staying abreast of how it’s going, and we hope that you’ll be describing it on NEJM Catalyst. So thank you so much, Rodney, for sharing your experience with us today.
Tucker: Well, we appreciate it, Tom, and our work along with Dr. Ronit Elk at the Medical University of South Carolina and others we think is going to accelerate us into the next generation of the linkage of these two. We appreciate the opportunity, and I’ll be happy to keep you posted as we make progress.