Talk about your work with UAB and the development of the Clinical Research Program in Palliative Care.
Okay. Well, as you may know, I’m a long-term resident of Alabama, so I went to undergraduate college and medical school at UAB and then was in private practice and internal medicine for a decade. During that time, I had discovered that many of my patients were older adults and were facing serious illness and approaching end of life. And so I self-trained and board certified in Hospice and Palliative Medicine and came back to UAB in 2002 as the Palliative Care program here was just starting. And so, over the past 19 years, I’ve worked with an incredible team here at UAB to integrate the principles of palliative care into the clinical operations of the hospital and the ambulatory setting in an academic medical center.
How are you seeing that process grow or transition in the last few years?
So early on in the first decade of sort of our growth and building, there was still a lot of misconceptions about what palliative care is and sort of the definition of how palliative care and serious illness care was integrated into curative or remitive care and treatment. But then over the past, I’d say, five to 10 years, it really has become less intimidating. It’s become more of, what we would call, the standard practice for patients in terms of aggressive symptom management, improving communication about serious illness and end of life. So the trends we’ve seen over the past five years in particular, is a growing acceptance and knowledge about, not what the word palliative care means, but the emphasis on patients goals and the emphasis on good quality of life, as well as quantity of life. So it’s been a very rewarding transition of what we seeing. We’re still not there yet, obviously, because these are difficult… It’s difficult subject matter.
So since the pandemic, where do you think palliative care and long-term planning end of life care will go, as a result of that experience?
I think on the aspects of the COVID pandemic that have disrupted sort of the traditional care model, there are some positive things that have come about. Number one, for palliative care, the access to expertise, palliative care physicians, and nurse practitioners, and the care team has improved because of tele-health. Now having said that, because COVID became, in many cases, became an illness of rapid deterioration and issues around intensive care, and issues around ventilator support, and things like that, I think it accelerated in the minds of many individuals and Americans, the importance of having discussions about their wishes in the event that they develop a life-limiting or life-threatening illness. So I think if anything, from the patient’s perspective, maybe COVID sort of unmasked some of the reluctance among individuals to have those types of conversations because maybe they had a friend, or they had a loved one, or they had a family member that had to have those difficult conversations, or maybe even unfortunately died as a result of COVID.
In terms of the providers, the physicians, the nurses, the nurse practitioners, the interdisciplinary team members, COVID accelerated our, I guess you’d say, being on the front line and being in the faces of suffering of many patients and individuals. Because physicians and healthcare providers many times were helping to facilitate the iPad or phone conversation that a family member that wasn’t able to be there was having with their loved one that may have been in the last stages of their life. So I think we witnessed a lot of suffering closer than we had in, maybe, in the past, and we saw that direct linkage to how the families were also suffering because they weren’t able to be there in the hospital as much with their loved ones. Fortunately, for palliative care, we were able to continue very modified and limited visitation, but we still were able to allow visitation when patients were approaching the last stages of an illness. So their family members could be there, but for many across the country and in other institutions that wasn’t possible. So we were, as the healthcare providers, more in the face directly of the type of patient and family suffering.
So you’re very involved in educating medical doctors as they’re coming through at the educational level. What will help with physicians already in the field that haven’t had that opportunity, in your opinion?
I think one of the primary areas to reinforce is that medical education and the goals of medical education now around communication are changing and being enhanced, primarily in that we emphasize more shared decision-making among patients and their healthcare providers and their families. And so the newer generation, so to speak, of healthcare providers are getting that. For those that are already in the field, they’re already practicing physicians, nurse practitioners in the field, one of the main things we have to do is sort of break it down into bite size learning moments, a bedside moment that could be incorporated into a busy practice. So, for example, around goals of care communication or advanced care planning, it’s commonly believed by many currently practicing physicians and practitioners that that is inherently a long conversation, it’s inherently a difficult conversation, and they may not be skilled at doing it. Well, you can break that down into asking a patient very clearly just…
Projects, research projects right now that involve a telehealth component. One is a project in which patients receive either monthly face-to-face palliative care visits in the clinic, or they receive monthly tele-health interactions, visual, virtual tele-health interactions, to really see if it’s as acceptable, to see if it’s as efficient, if it’s a benefit to the patients. So we’re comparing those two groups. It’s part of a national study out of Mass General and Harvard.
And then the second is looking at the role, the feasibility, and the acceptability of a remote palliative care console for a hospitalized patient that may be in a hospital in a rural area in the South, that doesn’t have access to palliative care, to assist the hospitalist in that local community in the hospital, maybe look at symptom management or goals of care conversations. So we’re looking at that to see if it’s feasible, if it’s acceptable, and if there’s some benefit for patients to have that console versus not having a console. And we’re also doing it in a culturally concordant way, so the consult is geared to what’s acceptable for rural African-American culture versus a rural white culture. So those are two aspects in particular, but we have a lot of research around, again, around culture, around caregiving and bereavement care, around access to palliative care.
So one of your family members doesn’t have a health care plan, advanced care plan, what would you have to say to them, Rodney, based on your experience?
I would say that if they don’t have a document in writing that it’s okay. The most important thing is, if it’s a family member, is that they have shared what matters most to them if they have a serious illness. Maybe we’ve talked about what brings them strength, which usually relates to faith or family. And then at least telling me who do you want to speak for you medically, if the situation becomes that you can’t direct your healthcare. Because that could be very different from who gets the Cadillac, and who gets the horse farm, or who gets great-grandmas jewelry collection. That’s a very different conversation, but who speaks for you medically? Who knows your medical wishes? Most of the time, that is one of the most important pieces of information. If folks don’t want to think about the issue of resuscitation, or life support, or food and nutrition because maybe that’s too painful to think about, at least if we can start the conversation around, “Well, who’s going to know you the best and who do you want to speak for you?” That’s the start. And then just also having a conversation about, well, when would it be time for us to have that conversation? And they may say, “Well, if I do develop what may be a life limiting, serious illness, then we’ll have that conversation.
Terrific. Is there anything you want to add?
I can’t think of anything. You know, we just continue to do the work, palliative and supportive care, because we are convinced that it is the care model that provides better continuity for patients, that matches patient’s goals to what the medical science can deliver, and focuses on quality of life and not just quantity of life in the context of a family. And it’s provided by a team of individuals that solely have the goal and mission to improve the quality of life for that individual. So that’s the bucket statement kind of summary of what we do. And we just hope the healthcare system continues to realize the value, match that with true compensation and investment of resources into the field.