Palliative Care

Speaker 1: Welcome to Bench to Bedside, a weekly series of live conversations about recent advances in cancer from the research bench to treatment at the patient's bedside. And now, your host and the Director of the University of Kansas Cancer Center, Dr. Roy Jensen.

Dr. Roy Jensen: Hi. I'm Dr. Roy Jensen, Director of the University of Kansas Cancer Center. With me today are Dr. Christian Sinclair and Dr. Elizabeth Wolf Birchfield. Both are specialists in palliative medicine, and Dr. Wolf Birchfield is also a hematologist oncologist. Thank you for joining us for another episode of Bench to Bedside. Today we're going to discuss palliative care, and the value it brings patients and caregivers navigating a complex cancer diagnosis. Dr. Sinclair, can you please define what palliative care is for us? Exactly what does that entail?

Dr. Sinclair: Yeah, I'd be glad to, and thank you for having us. Palliative care is an approach to the care of a patient that really seeks to improve the quality of life for that patient, and also their family. And it's really designed for patients who are going through a serious illness. In particular, both Dr. Wolf Birchfield and I focus on cancer at the Cancer Center, but it is for anybody with any serious illness, even heart failure, Alzheimer's disease, anything that is effecting someone's life.

Dr. Roy Jensen: So, what type of patients would you say really benefit from palliative care? Could you please give us maybe some symptoms or scenarios that indicate a patient might consider palliative care?

Dr. Sinclair: Absolutely. Our medical expertise is really focused on symptom control, and that's where we are doing an excellent symptom assessment, really understanding not only what's causing the pain or nausea or depression or anxiety, but really understanding how the different medicines or treatments that we're using may be interacting with that, as well as the underlying disease. We also really work in situations not where someone has one severe symptom, but maybe they have a lot of mild symptoms, but altogether it really adds up and makes their day to day life really challenging.

Dr. Roy Jensen: If you're just joining us, we're here with Doctors Christian Sinclair and Elizabeth Wolf Birchfield, and we're discussing the role of palliative medicine in cancer care. Alicia Miller is here in the studio to take your questions. And remember to share this link with people you think might benefit from our discussion. Use the hashtag #benchtobedside. So Dr. Wolf Birchfield, you specialize in both palliative care and hematology oncology. As you provide care, on both sides of the patient, would you share your perspective on how both fields bring different value to the patient?

Dr. WB: Of course. I ... the way most of our interactions and patient relationships work is that the oncologist or hematologist works with the patient to create a plan of care, managing the patient's cancer, and usually with input from not only the patient, but their caregivers and loved ones, and the palliative care provider would do everything possible to facilitate that care plan, remove symptom barriers to the plan, to try and ease the burden that could be caused by any of the ... any part of the treatment plan itself. And also, help the patient and caregivers unpack the diagnosis in the context of the patient's whole life.

Dr. Roy Jensen: Sounds like a very holistic approach to treating cancer patients in particular.

Dr. WB: I agree. We think so.

Dr. Sinclair: Yeah, absolutely.

Dr. Roy Jensen: So, Dr. Sinclair, what are some examples of the kinds of care that you provide as a palliative medicine specialist? And give us a sense of the specifics that a patient might expect.

Dr. Sinclair: Sure. Oftentimes we're asked to be involved with a patient's care, maybe because the oncology team has asked us to be involved, but also sometimes the patient and the family, they have ... may have had other experiences with palliative care, and have seen benefits for other family members, and they sometimes ask for it themselves. And once we first meet them, it's really about spending time with them to listen, get to know what is most concerning, most worrisome for ... in their situation, and so oftentimes, the first visit is spent doing a classic medical visit where you're doing a physical exam, and going through the medical history, but it's also understanding "What is that person's day to day life like with cancer?" And how they view their life in context of the cancer. Is that something that defines everything they do, because they're searching for some way to get past this cancer, or are they trying to maybe forget about the cancer, and they don't even want to say the C word. And so we really want to understand how they approach their illness as a unique individual. So a lot of our intervention, a lot of our procedure is more about time spent with the patient, and thankfully we are structured here at the University of Kansas, where we are given a little bit more time than sometimes our standard visits, because that is where we do the bulk of our work, is time.

Dr. Roy Jensen: Okay. So, two things that are very often confused are palliative care and hospice. Could you guys explain the difference between those two things?

Dr. Sinclair: Sure.

Dr. WB: Go ahead. Your turn.

Dr. Sinclair: Thank you. So, palliative care and hospice, I like to think of them as similar but different. They're really ... they come from some of the same shared values, and that looking at a person and a family as a whole unit, and not just a disease as the main focus of care is really important. But hospice is really focused on end of life care, when a patient has decided that they want to focus on comfort and not on modifying their disease or trying to attempt for cures. Palliative care can be in lots of different situations, where someone is being very aggressive, maybe they're going for a bone marrow transplant or a liver transplant, maybe they're going on a clinical trial. Palliative care can be delivered at the same time, and I think that's where I've seen, especially working with Dr. Wolf Birchfield, who has enlightened me into how hematologists and oncologists approach patient care. Oncology care is getting so complex, just focus on how do you treat the cancer, that sometimes it doesn't always leave space and time to deal with some of the quality of life issues, and that's where, when palliative care and oncology work together side by side, while going through an aggressive cancer treatment and aggressive goals of care, it really can work out well for the patient.

Dr. Roy Jensen: So Dr. Wolf Birchfield, do you feel patients are apprehensive about seeking palliative care? And if so, how do you go about increasing their comfort level with this?

Dr. WB: That's a great question. I do think a lot of patients are apprehensive about palliative care. Sometimes I think that comes from the fact that they ... in order to even meet with an oncologist for the first time, they've met with a lot of other doctors and a lot of other specialties, usually have had procedures, and often they're wary about letting someone else in the inner circle. And so ... but the other reason I think, is because hospice and palliative care are often felt to be the same entity and the same sort of system, which, as Dr. Sinclair mentioned, they're not. I think a lot of the way that we can help patients have more contact with palliative care is really by ... in some ways I consider my approach to show, not tell. So the work I do with one patient demonstrates to a given hematologist or oncologist, and to that family and patient that we're not trying to undermine anything, take anything away, we're only trying to be a value add. And so, I think on an individual level, that's one ... those are the main ways that we do things, but also, I think sometimes by having face time with support groups, community organizations, and even things like this, where we have an opportunity to talk about how palliative care specialists view our field, really increases visibility, and gives a voice to some of the fears that patients have, and also gives us a chance to address them.

Dr. Sinclair: I think one of the other things that we do really well in the outpatient, the clinic at the Cancer Center is ... we are two doctors here, but we are a team that includes nurses and social workers, and one of the great things that our palliative care nurses do at the Cancer Center is they do an introductory meeting and just ... and a brief evaluation, and talk about our services. And I think that goes to Dr. Wolf Birchfield's point of show, instead of telling people what it is, and once they're able to see that and see that palliative care providers really want to take the time to listen and understand, I think that really gives them a sense "Okay, these are people I can start to work with and trust, and really let them know what my fears or limitations are about palliative care."

Dr. Roy Jensen: Well, I'm glad you brought that up, because one of the things that I'm most proud of is the fact that we really bring patients the combined insights of an entire collaborative team with many different team members, different types of professionals, and when you provide care, Dr. Wolf Birchfield, would you describe how a palliative care specialist serves as a member of an overall team?

Dr. WB: Absolutely. We, a lot of what we do focus on, especially in early visits, is symptom control. So we, as Dr. Sinclair was mentioning, we'll do a really thorough assessment and then really do aggressive management of symptoms. Some of the other things we help do is facilitate communication between other members of the team. I think that ... my colleagues here of all disciplines at the Cancer Center, I think, are by and large great communicators, but because of the complexities of cancer care now, it's really hard to keep the message straight. And so I think a lot of the other ways that we help is to talk to that patient's hematologist oncologist, surgical oncologist - In a correct understanding of what the goals, expectations, plan logistics entail, and so I think we're ... sometimes I consider myself a little bit of a messenger or go between, and sometimes I feel really hunkered down with the patient, intensively working to help improve their symptom, distress, worry, all of those different things are what I think our job entails.

Dr. Roy Jensen: So, maybe tell me a little bit about research and clinical trials specific to palliative care, and I know that clinical trials are very important to our patients fighting cancer. Tell us how your team is involved in either your research or with the research that's going on on the hem-onc side.

Dr. Sinclair: Well, I can definitely speak to how we work with our patients that are in clinical trials, and I'll hand it over to you, Dr. Wolf Birchfield, to talk about some of the research that we're doing. For patients who are in clinical trials, there are significant limitations on certain medicines that they may be able to use while they're on the clinical trial, or how often they have to come for visits, and so we really work with the primary researcher and clinician that are leading that clinical trial, and the patient, to understand "Are there certain medicines that maybe we should avoid using because that might rule them out of the clinical trial?" So we want to be very mindful of our plan actually fits with the patient's plan and fits with the oncology plan. And so that requires a lot of extra communication, but we understand that that's what the patient and the family need. That gives them the confidence to keep going on a clinical trial, and so we work to do that. In addition, if there are any symptoms that might make a patient say "I don't know if I want to be on this trial" or even "I don't know if I can stand being on this therapy", we work with the oncologist to understand "What can we do to control those symptoms to allow them to successfully complete a chemo regimen or complete a clinical trial?"

Dr. WB: So in addition to helping make sure that there are no barriers to our patients doing their cancer clinical trial, we are also ... our group does research as well. For example, we're a part of the PCRC, which is the Palliative Care Research Cooperative group, and one of relatively few sites for a national clinical trial that is looking at a way of implementing a tele-health palliative care intervention. In addition, we have several homegrown trials that ... one looking at attitudes and beliefs about palliative care from every member of the care team and patients, and others that are working to improve access to palliative care and symptom control throughout other parts of the cancer journey.

Dr. Roy Jensen: So, Alicia, it looks like we have a question from our studio audience.

Alicia: Yes we do.

Dr. Roy Jensen: Fire away.

Alicia: Alright. The question is "What if the patient or family doesn't know about palliative care, and the oncologist doesn't bring it up? Who will reach out to that patient and the family?"

Dr. Sinclair: That's a great question, and I'll tell you, five or six years ago, that was something that I encountered probably once a week, a couple times a month, where we would meet a patient and family and they'd say "We didn't hear about this. This feels like we should've known about this earlier." And I'll say in the past year, it has been ... the past year or two, it's been getting less and less often that I hear that. So I think more people are hearing about it, and that's good, but sometimes we still do hear that, where a patient and family aren't aware of it, and maybe the oncologist may not feel it's time or ready for that, or have different understandings of what a palliative care team can provide. And I think for that, it's really up to us to reach out to the public and make sure that we are doing education and bringing down those barriers, and maybe potential misunderstandings. In addition, we do reach out to our oncology and hematology partners, and make sure that they feel comfortable collaborating with us, and that there aren't any barriers in how we work together. And I think what I've seen at the KU Cancer Centers from leadership to frontline staff, we are seeing a lot of endorsement and support for our collaborative work.

Dr. WB: I've had other patients who reached us by way of a recommendation from their own disease specific support group, for example, or from a caregiver support group, and so I think that's another place and another way that sometimes patients hear about palliative care, and then often will inquire about it to their hematologist or oncologist. And then they will place a consult. But I have been overwhelmed during the time that I've been at KU about the buy in that ... from the part of not just the institution but the individual providers on every level of the clinical infrastructure here. And so we're very lucky to practice here.

Dr. Sinclair: And I think because of that, palliative care on the inpatient side, we just celebrated our 20th anniversary this year, so that was really exciting. On the outpatient side at the Cancer Center, we're celebrating our 5th year anniversary. So five years is a short time, but a long time, and we are ... we have been growing at 50% year over year for the past two years, so we saw 2000 visits last year and served over 500 patients and families, and we are growing both ... and trying to make sure we have enough good clinicians, physicians, nurses, social workers, to be able to serve that need.

Dr. Roy Jensen: I'll share with you an observation that I've had in my time at KU, and that is one of the most common issues that arose early in my tenure as Director of the Cancer Center was around pain issues, and other symptoms that our cancer patients were having. And probably close to 10 years ago now, and certainly within the last five years, obviously we've made a huge effort to better integrate palliative care with the hem-onc group, and that's been absolutely incredible in terms of, I think, delivering value to our patients and it has literally been years since I've gotten one of those calls.

Dr. WB: Oh wow.

Dr. Roy Jensen: So if you don't think you're making an impact, you definitely are. I'll ask both of you this question. Do you have any kind of bottom line messages for our audience this morning around palliative care and those issues?

Dr. WB: I do. The bottom line for me is that palliative care involvement in a given patient's care doesn't take away anything. It doesn't risk anything. Our goal is to help every patient live his or her longest, best life, and I think that we collaborate constantly with the hematologists and oncologists here to make sure that we're all working towards that goal. If you have any ... if it's a thought in your mind that you could ... you might want to meet with a palliative care physician, I think it's worth a try, and we'll see what needs arise.

Dr. Sinclair: I agree. I think one way to look at it is any age, any stage. If there is something that is really impacting your quality of life, for a patient or a caregiver, that is something that we might be able to make a difference in. And as Dr. Wolf Birchfield said earlier, sometimes people are challenged by saying "I've got too many doctors already." We can really tailor it to what the patient needs. If they just need a one time consult, and just need some advice on a couple of issues, we can do one time. If they say "Gosh, I need an ongoing relationship, and build some trust and really work on managing these symptoms over time.", we follow patients longer term, too. I think one of the things that's amazing about palliative care is, we get involved with patients in really challenging times, but it is much better to know them when they go through the crises that may come up in their care, it's much better to know them as a friend and as a colleague than to meet them for the first time. And I think when we've seen that, we've been able to get people through crises no matter the outcome, and it's also allowed us to see really great stories where people have been able to survive and actually get better enough where they don't necessarily need our services anymore, and that's a fantastic story, too.

Dr. Roy Jensen: Looks like Alicia has another question for us. Go ahead.

Alicia: Yes. This question says "Dr. Wolf Birchfield mentioned homegrown clinical trials. What does that mean?"

Dr. WB: Oh. What I meant by that was that our ... myself and my colleagues in palliative medicine here, that we're ... we have written clinical trials that we are actually getting started here ... to conduct our own research rather than simply ... or, in addition to being sites for larger, national clinical trials. So we are doing some clinical trials that are unique to our institution and our institution only.

Dr. Sinclair: That allows us to see problems that clinicians may encounter in a regular clinical setting, and bring them to our palliative care research team and say "This is a unique situation but I feel like it's happening more. What questions would we want to ask about this?" And then we get our research team and our clinical team together and set up how we want to inquire about that. And what we're finding is that there's lots of areas in ... around quality of life that haven't been explored, especially issues related to caregiver distress and challenges. And so having our own research team allows us to ask those question.

Dr. Roy Jensen: So I'm curious, what was your inspiration for going into the palliative care field?

Dr. Sinclair: For me, it started back in 2003 when I was a medicine resident, and I really enjoyed my time in the ICU, and what I found that I liked ... I thought it was because I liked the complexity of the care and maybe doing some of the procedures. All of that was very professionally rewarding to me, but what I found that I like was when it was night time and I was the resident on call, and families would come and ask "Hey what's going on? We have a family member who got off work and wasn't able to be here when the rest of the team was here. Can you explain really what's going on?" And those meetings with family members to really take the time when it wasn't super busy in the middle of the night, to explore what was going on and what was important to those families really showed me how important good communication is and how healing that can be, even when the medical outcomes aren't what any of us would wish for.

Dr. WB: For me, I really have always felt like oncology and palliative care together was the plan since medical school. I really have a heart for this population. I think patients who are dealing with cancer need a shepherd, and I think that's how I feel, that I shine. For me, I'm a really relationship driven person, and I knew that I wanted a way to be a part of multiple parts of the cancer journey with patients at different times, and to ... for me, being a part of the relationship over a long period of time feeds me. It's worth ... we rejoice with our patients, we grieve with our patients, and the relationship makes it worth the hurt that sometimes happens.

Dr. Roy Jensen: Well thank you both for what you do. I know that our patients derive a great deal of value from it. Thank you Dr. Sinclair and Dr. Wolf Birchfield, that's it for today. To learn more, please visit kucancercenter.org/palliative. Join us next time as Bench to Bedside explores gut health and the microbiome. Thanks for watching.