Caitlin Whyte (Host): Welcome to In Their Words, a podcast from UPMC in Central PA and the UPMC Pinnacle Foundation, where we share the stories of the people, programs, and partnerships making a difference in the lives of patients and families across Central Pennsylvania. When many of us hear the words palliative care, we may immediately think of hospice or end-of-life care. But as today's guest explains, palliative medicine can be so much more. An additional layer of support for patients and families navigating serious illness, helping them manage symptoms, make difficult decisions, and focus on what matters most to them.

In this episode, we feature Dr. Robin Hicks, physician Medical Director of UPMC Supportive Care and Palliative Medicine in Central Pennsylvania. She speaks candidly on what drew her to this deeply personal field of medicine, the relationships she builds with patients and families, and the many ways philanthropy has helped her team provide additional comfort and support.

From small keepsakes that preserve a loved one's memory to helping fulfill a patient's final wishes, this is a conversation about what it means to care for the whole person and the people who love them.

Dr. Robin Hicks: So, my name is Robin Hicks. I am the physician Medical Director of our UPMC Supportive Care and Palliative Medicine team here in Central PA. I have been with the organization since 2018, and became the medical director in 2019 about a year later. Our team since that time has expanded quite a bit. We cover all seven of our hospitals for inpatient consults. We have seven office locations as well, and a lot of, you know, quite a robust telehealth service, particularly in the outpatient ambulatory world, because we just have patients all over Central PA.

And so, we're continuing to grow it seems like all the time, because there's such a need and we have a lot of people on our team that are just really passionate about providing this type of care for patients and their families with really serious illness and to help make things as good as it can be given these really, really tough circumstances. So, there's a really big misconception about palliative care. But sometimes when people hear palliative, they automatically think hospice. And that is very understandable. So, palliative care largely came out of the hospice movement. And really, it originated by identifying that there are patients that still wanted to continue what we consider disease-directed treatment or, for example, a patient who has a cancer diagnosis wanting to continue chemotherapy or radiation treatment or even surgery.

And in order to qualify for hospice, someone is not able to continue those treatments, and the focus is fully on symptoms and on comfort for the remainder of their lives, however long that they have left. Palliative care, though, on the other hand, we are able to provide that level of support regarding symptom management with assistance with existential suffering or psychosocial support and also really help with medical decisions in addition to them receiving all of the other treatments that they normally would be.

So first, I ask patients and families, have they heard of palliative care, really to see are they thinking that we're hospice too, because we're not. And so, to kind of address that right away. But then, I always say something like, "We are a specialty of medicine and our team is really here for an extra layer of support. We work right alongside your other doctors, your other medical teams, and we are able to help with medical decisions and symptom management." Particularly in the office setting, for example, probably about 90% or so of the patients that I see in the office on our team who we see in the office have a cancer diagnosis and are going through cancer treatment.

And so, part of what we do, particularly in the office setting, we do a full symptom assessment, really see are they having symptoms from the illness itself? Are they having side effects from treatment? Are they considering stopping treatment because of the side effects? And if they are, and it's because of a side effect or other symptoms that potentially we could help with, oftentimes we help people feel better and better enough so they are able to continue treatment if that's what they want for their care.

So, we work hand-in-hand with all of the other doctors. Again, I reference oncology just because since we have a large population of patients that have a cancer diagnosis. And then, in the hospital setting, similarly we can absolutely help with symptom management whether it's pain, shortness of breath, nausea, mood. You know, if people are really struggling with anxiety or depression symptoms that are directly related to their advanced illness. And then, really, in the hospital setting help with very tough medical decisions.

So, sometimes in the hospital, depending on where folks are at, we have conversations about hospice care if that's appropriate. So, it really all depends where each person is at with where they are in their illness journey, what they know and understand about what's going on, what they want for their care. And that's really one of the biggest things that we do is kind of take a step back and look at the big picture. And we're able to do that in conjunction with the other doctors and teams, because the other folks are the doctors and nurse practitioners and the whole medical teams, they are the ones that are focusing on the labs and the antibiotics and all of the things that are very necessary and needed. So, we can take kind of a step back to make sure that what we're doing is really what each patient wants for their care and help them in some really, really, really tough times.

Many years ago, I actually wanted to be a veterinarian until I was maybe middle of high school, and then it shifted to human medicine. I wanted to do pediatrics. So thankfully, the opposite of what I do now since I do not do pediatric palliative care. But that really morphed, obviously, from pediatrics, then I wanted to do obstetrics for a little while. Then, I thought, "Oh my goodness, I can do all of that by doing family medicine." So, I did my residency in family medicine.

And my older sister is a music therapist, and she worked for hospice for many years. And actually, she was the one that introduced me to this field. And I was fortunate enough to do a rotation in medical school with the medical director of a hospice that she worked with during that time, and it was amazing.

But it didn't quite click then either, that this general field was what I was going to be really interested in until my second year of residency. So, I did my residency at what is now UPMC Lititz. And there, I was able to rotate with the palliative care team at Lancaster General and in the inpatient center in Mount Joy. And it was there during my palliative care rotation that it absolutely clicked. I saw a palliative care physician have a meeting with a family, and I'd never seen anybody talk to patients or families like that before, really wanting to better know and understand them as people, not unfortunately how a lot of medicine is now, where we're so constrained with time, and with the insurance companies, and all of the demands in family practice, for example, where you have very limited time with patients.

I was always behind too. Oh my gosh, I was 45 minutes, an hour behind all the time because I wanted to really get to know people. And in palliative care, I was able to do that. And also, most importantly There was a patient after that rotation that I had, that first rotation that I had in residency with palliative, there was a patient who came into the ER from a nursing home. I was working nights in the ER. And she was not able to communicate. She had had a stroke previously. And there was no family that we could reach at that hour. And I was just looking at her, and she wasn't able to verbally communicate, but it just seemed as though she knew what was going on, and it just is not something that she wanted.

And I really wanted, at that moment, to be able to take a step back to further investigate, "Okay, how do we advocate for this patient and better understand if she was able to communicate how she would want to be cared for in this setting? Does she really want us to put all of these lines in, start all of the medical treatment and intervention that we were about to, because that's what we are obligated to do unless we have somebody or documentation that's able to communicate otherwise?"

That's a long answer, a way of saying I was originally introduced to the specialty of caring for people at end of life and with serious illness through the experience I had with my sister as a hospice music therapist and her medical director. Then, very much was confirmed in my residency when I was able to actually do a palliative care rotation and see all that was done and able to be done with these patients and their families. And further confirmed with my experience particularly in the emergency department with that one patient that really sticks out in my mind.

I will advocate for people if they want all of the treatments and then they know what the side effects are or the consequences are of doing that, I will absolutely be behind you. But it's really being able to advocate for people in sometimes their most vulnerable moments is what really draws me to this field. We've been working with the foundation for quite a while now since I've been here, at least since 2019 when I became the medical director. And in that time, being able to identify needs that we can't bill for in the traditional sense with insurance or even the hospital necessarily.

And so, one of the pieces actually that I brought from my fellowship training was what are called these memory stones. And so, that's really where this first started. Our relationship with the foundation is—and I wish I had one right with me, but the memory stones, they are these clear glass stones where there is a picture on one side. So when you look through it, you can see the picture. And then, on the other side, we would take the patient's fingerprint and put it right on that stone, and then seal it with some clear nail polish or some other products. And then, the families then could have that as something to remember their loved one by.

And so, I remember as a fellow, I would do that myself, right? We had a wonderful volunteer team that helped. But when it was my patient, I often wanted to help make the memory stones for the families. And just being able to give the families something tangible that they could keep in their pocket, that they could keep on their desk at work or at home. Just that tiny gesture really meant so much to the families left behind.

And then, from there, right, and the foundation funded that project. And then, really from there, it has evolved into lots of other things. Nurses in particular in the various hospitals, they work side by side with the patients and the families much more time-wise, they are there for eight hours or 12 hours right at bedside, and they come up with all sorts of amazing ideas as well such as printing out the last EKG or the last heart monitor strip that the patient has before they pass away and print that out and put it in a little glass bottle or a little globe. We have had other things such as cutting a lock of hair and putting a little ribbon around it. And then, blankets and lots of different things that have been done to help with families grieve and really start the either pre-bereavement or the bereavement journey helping to make things just a little bit better. Because again, we're not going to solve all of these problems at all, right? There are so many things, particularly in my field, that we can't fix. But if we could just make it a little bit better, a little bit more tolerable to not only help in that moment, but also as the grief that the families and loved ones who are left behind starts to be kind of intertwined in their essentially new life without that person who's the closest to them. So, the foundation has been wonderful support in all of those various projects that we've had.

And recently, within the last six months or so, we were able to receive some additional funding to start a bereavement pilot program where were going to be doing more intentional legacy projects that are going to be potentially much larger than the memory stones or the locks of hair or the blankets and all those really wonderful things. But really identifying families or loved ones of patients who are really struggling, but also are creative in some ways, or whether are they musicians? Are they artists? Are they able to, with the help of a certified bereavement professional, create something to help with their grief.

And so, we are starting that now. It's very exciting. We have one person to start. And so, that process is going, and I'm excited to share in the future once we are able to say a little bit more about specifically what those projects are going to be. So, very much helping with that.

Also, financially, there have been multiple times where the foundation has been able to support patients and families financially directly. Not infrequently, patients end up in our hospital systems, and they don't live here. Let's say they're placed in a rehab facility that's far from their original home, but this was the only location that they could get rehab placement. And then, they end up in one of our hospitals, but they're an hour and a half, two hours away from home. The foundation for one particular very complicated situation patient who was sick for a very long time ended up in our hospital. The family made the most difficult decision to transition them to comfort care after a prolonged hospitalization. That patient lived two hours away. The family was not able to afford. They wanted her to, if at all possible, to be closer to them during her final days. And the foundation was willing to pay for that transportation from our hospital two hours away to get the patient where the family knew she wanted to be at end of life. It couldn't have happened if we didn't have the foundation support.

Another situation most recently patient was in the hospital very close to end of life, did not want to pass away in the hospital setting. Family could not afford to have this patient at home with 24-hour nursing. That's extremely expensive, and they were hoping to get this patient placed in a nursing facility or a hospice residence. And the foundation offered and agreed to support this family financially to pay for room and board to help fulfill this patient's wish and strong desire to spend the last days just not in a hospital setting.

And when I spoke to the nurse practitioner who was caring for this patient, she said the look of relief on the family's faces when she told them that the foundation was going to support this, she said that it looked as though she told them they won the lottery. I wasn't present to see this, but just hearing what she said, I mean, the room changed, the tone, the feeling. It was just completely different. And that gift is not just for that specific patient, it has that trickle-down effect, for the family now is going to have that memory of them at the end, not in a hospital setting. Even though we try to make it as warm and as comfortable as possible, but that is going to carry then through potentially even generations as they are, you know, working through the grief of losing this. And also, this patient, they were young too. So, an added layer. And I could go on and on and on about all the ways that the foundation has been able to help us.

And I will just say too that although we've been talking about how we are helping the patients and their loved ones, this also helps the staff and helps us. I mean, it's heavy stuff caring for folks that are faced with the most difficult moments of their lives. And it can weigh on us as we're caring for them. And being able to offer a little bit extra also helps us sustain this work knowing that, yes, we have to work in the confines of the system, the healthcare system, insurance, all of that, but being able to offer these things, it's so heartwarming and really helps us be able to continue this work.

So, that has been a journey, I will say. And there are some days where I feel balanced and feel like I'm doing well with that. There are other days that I need to catch myself, to be like, "Okay, You're bringing this home." And so, I've done a lot of various things over the years. Taking care of myself physically and mentally helps a lot. I have two young children. And so, they also help bring me out of whatever I'm feeling. And a wonderful husband who is also a physician, too. So, we don't quite need to do this quite as much anymore, but we had to set limits for each other to talk about medicine. So, we would set a timer, especially early on in our careers and our relationship. We'd say, "All right. We each get five minutes to vent about whatever happened today. And then, we're not talking about medicine anymore the rest of the night." And that really helped, too, because we're like, okay, we know we can get it all out. And there's someone else who's going to really understand what we went through that day, and then we're going to move on with our day. So, being able to hold space for whatever really rough thing happened that day, and also recognize the impact that I did the best that I could. And that has really helped.

And I will do some mindfulness practices as well. Just being really intentional about particularly if there's a patient or family that potentially reminds me of someone in my family or myself even. There have been a few times that that's come up. And just leaving myself, even if it's five minutes, right? Or even less. If it's, like, 30 seconds in the stairwell where I'm just like, "Okay, that was really rough, and here is the light that I'm seeing, too, with this," whatever situation it was. Being able to first acknowledge when there are particular cases or situations that you're having what we call countertransference or a patient or family reminding you of someone you love or yourself. And then, giving yourself a little grace and some time. Even again, if it's a few minutes to process what happened. Having someone in your life like my husband, who we can just vent to each other and also having the team that we have.

So, our palliative care team in Central PA, there is just so many wonderful people on the team Well, for many reasons. But if you have a challenging family meeting or a situation that you're getting too close to or caught up in, and being able to share that with someone on our team. Whether it's you know, another physician or nurse practitioner or a medical assistant or a nurse or social workers or a practice manager, they all get it. And so, this work you cannot do alone. It is a team approach, and we need everybody in all the disciplines to be able to make it happen.

One of my dreams, a big dream, is to have a place where we can have our patients who are not able to go home for whatever reason to go. And there are a few of them in the area, but there aren't enough, right? We don't have enough beds for patients to spend their last days, when home is not an option for whatever reason. And so, that's probably my biggest dream at this point, is to be able to have somewhere that is comfortable, the environment is calming, the care, first and foremost, of the patient is excellent. People know how to care for patients who are nearing end of life and how to prepare the families who are there.

I think the Mount Joy Inpatient Center, for example, I spent some time there as a resident, and I loved it there. It's in Lancaster County, and people aren't able to drive that far sometimes.

So, that would be a really big dream of mine, to have a hospice residence that is primarily for patients in our system that we can have them go and spend their last days there, out of the hospital setting where hardly anyone wants to be at end of life when they can't go home for whatever reason.

And then, from a departmental side of things, we have two new physicians starting this summer, which is amazing in so many ways. But we are going to be able to expand our services even further. So, opening up a couple new clinics eventually having palliative care in nursing home settings, which we have never been able to do with our system. Providing more intentional resident and fellow education in palliative care to spread the word to provide that education to formative minds, people who want to learn, and then will be able to carry those skills to whatever specialties they end up in.

Eventually, I want to start a palliative care fellowship program where we can train more physicians to be in this field. And so, that is very needed. Well, I'm excited for our new physicians for many, many reasons. But the demand for palliative care physicians, because hospital systems and cancer centers and everyone across the country are really getting it now, and what we can do, and how we can help support their patients and their families. And they want more palliative care, which is amazing. It's so great. And we need more physicians to be able to do it In addition to, of course, our nurse practitioners and we don't have any physician assistants, but there are some wonderful PAs who in palliative care. We need more of us, and I would love, love, love to be able to do that in the hopefully near future now that we have some more physicians coming.

And then, working more on this bereavement pilot program, and hopefully expanding that even further and having more disciplines involved in our palliative care department that are not as clinical, as a physician or a nurse practitioner as we have to be.

Michelle: Not necessarily a question, but just something I just wanted to kind of, elaborate on a little bit too. A lot of the work that Dr. Hicks has been talking about, especially the things that we are working on with the memorial service and our bereavement coordinator and education is very much thanks to an incredible organization called Cancer Legacy in Action Project. This group was brought to us a few years ago, and they do a lot of support for families after somebody passes away, you know, again, most likely in cases of cancer. And it really helped us as a system and as a foundation to take a deeper dive into how we are supporting families during the palliative care process and the bereavement care process.

Caitlin Whyte (Host): Our thanks to Dr. Robin Hicks for sharing her perspective, her passion for palliative medicine, and the extraordinary care she and her team provide to patients and families. As Dr. Hicks shared, there are times when we may not be able to change what a patient or family is facing, but we can find ways to make their experience a little better.

Through the generosity of donors to the UPMC Pinnacle Foundation, her team has been able to provide meaningful support that extends beyond traditional medical care, from keepsakes and bereavement resources to helping honor a patient's wishes during some of life's most difficult moments.

Our thanks as well to the donors and community partners whose generosity makes this work possible. Thank you for listening to In Their Words. To learn more about the UPMC Pinnacle Foundation and how you can support programs like these, visit upmcpinnaclefoundation.org. We'll see you next time.