Episode 17: The Practice and Trajectory of Palliative Care in Oncology

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welcome back to cancer uncovered. I’m Laura pavatt with the live strong cancer institutes at Dell medical school. And I’m really looking forward to sharing this particular conversation with you. Today we’re uncovering palliative care. According to the NIH, palliative care is specialized medical treatment for people living with serious illness, with the intention to improve symptoms and enhance quality of life for the patient and their family.

Palliative care is often provided in addition to treatment intended to cure their illness. It’s helpful at any stage of disease, but it’s best provided. Soon after a person is diagnosed to explore this topic further, I sat down with two experts on palliative care for patients diagnosed with cancer in particular.

First we’ll talk big picture with Dr. Elizabeth quality director of the supportive care and survivorship program in medical director of the cancer treatment. At live strong cancer institutes, she’ll help to orient us to the background and future trajectory of palliative care. Then we’ll hear more about the day-to-day delivery of palliative care from Emily McLeod clinical nurse specialist at the live strong cancer institutes clinic.

Welcome Dr. Koala and thank you so much for taking the time to talk with us today. Could you start by introducing your. My name is Elizabeth quali and I am a palliative care physician. So that means I did my training in med school and my residency. And then I came back and did a palliative care fellowship.

And so my clinical work in palliative care has oftentimes been focused in. Figuring out how to take care of people who have a serious illness and are living in the community. That’s always been the place that I’ve been most fascinated. People spend a very small amount of time in hospitals and people spend a very small amount of their time in cancer centers.

They spend tons of time. Living at home and living in the community. And if we can figure out how to help them there, then we’re really going to help people improve their quality of life and live better when they have a serious illness. So that’s been the focus of my research and it’s also been the focus of where I want to build systems of care.

Could you define palliative care and then tell us a little bit more about how it’s changed over time? I think answering the question of what is palliative care is a great place to start. Because people have a lot of confusion and misconceptions about palliative care and how it can be helpful for people who are in cancer treatment previously, I think it was true that palliative care was something that was sort of reserved for people who were at the very end of treatment.

And for people who didn’t have good treatment options, then maybe a palliative approach that was directed to symptoms and trying to support quality of life would be helpful. In the last 10 years, what we’ve learned is that palliative care is a branch of medicine that can be helpful to people with serious disease anywhere along in the disease trajectory.

And in fact, cancer is one of those places where we know if people get early access to palliative care, they not only live better and have higher quality of life and fewer symptoms, but they live. And that’s a radical rethinking of what we used to say about palliative care. People used to think that, you know, sort of palliative care was maybe giving up or not being as aggressive as you could be with your treatment.

But in fact, I think one of the things that I want to get out there is. Palliative care is a part of the very best cancer treatment that will help people live as long as possible. And people should want access to it. As early as possible. Height of care is different from hospice care and hospice care is really a benefit, like an insurance benefit that people can have when it’s expected that they have six months or less to live.

So people qualify for hospice at the very end of their cancer journey, but they can qualify for palliative care or benefit from palliative care. Along in that journey. In our clinical program, we have people who have early breast cancer and those people are going to have a normal life expectancy, early breast cancer patients have a 99% survival rate society.

But they can also benefit from palliative care because we can help make sure that they get through treatment as a whole person. And that we’re doing things like managing their symptoms as well as possible and prioritizing their treatments and their support so that we’re taking care of the things that are important.

Definitely. And where do you think palliative care is going? Do you think eventually all clinics will have palliative care integrated into service. So I think actually constraining palliative care to clinics is a really small vision of where palliative care is going. So I think where palliative care is going is out into the communities.

And I think palliative care is going in the direction of all layers. Health care providers, delivering palliative care and some non-healthcare providers. We did this really big project that trained lay health navigators to deliver components of palliative care interventions. So we trained nonmedical people to help do proactive symptom assessment with patients and begin doing values discussions with patients.

So what’s important to you. And if the doctor says. This treatment might not be helpful. What are the things that matter most to you? Those sorts of things don’t require a doctor to say them. And in fact, they might be more impactful if the person’s saying, though, looks like you and is a trusted member of your community.

And so when I think about where palliative care is going, I think the most important work we have to do in palliative care is to figure out how to disseminate. The palliative care intervention and the most impactful parts of the type of care intervention, and then ensure that we have strategies. So that that gets integrated into the more structured healthcare system.

They’re the ones that answer. I think this is related. I’m wondering how access to palliative care influences healthcare disparities. And so that’s a really great question and it directly relates to how comm was designed, because what we know from the science that’s been done is. Significant issues with disparity and access to palliative care.

If you are much less likely to get the benefit of palliative care, if you are African-American or your ethnicity is Hispanic, but. If we build a system where it’s just hardwired into the system. And so your oncologists implicit bias, isn’t a part at all of determining when you get access to care or your own cultural resistance to palliative care.

Isn’t part of that at all. If both. Issues are taken sort of off the table by the fact that palliative care is just part of what this health system does. Then we hope we can reduce disparities in any group that is traditionally affected by healthcare disparities and access to palliative. Right. I’m wondering if there are any other myths about palliative care that we can name and talk about, besides that it’s the same as hospice.

So I think, uh, one myth is palliative care means you’re giving them. And I think that is so pervasive. It’s so pervasive that in the health system that I used to work in, where we didn’t have an integrated clinic and patients had to be referred to us, patients would often refuse to come see us because they thought that meant their doctors were giving up.

Not only did patients refuse to come see us, but oncologists refuse to refer patients because they felt like they also felt like that was communicating the message to their patients that they were giving up on. Another myth. Palliative care is mostly about prescribing morphine, which, you know, it’s like there are so many tools in our toolkit other than pharmaceuticals.

And I often think the most powerful tool that I have in my toolkit is therapeutic presence. My willingness to stand in the room with a patient who is suffering and try to figure out how to help them. Is in itself in some way therapeutic. So sometimes we are providing medication, but, but a lot of times the work that we do is powerfully important in other ways.

That’s great. Well, thank you so much. I really appreciate you being here. And I think this background information is a perfect gateway into talking about more of the specifics with. As a reminder to our listeners, Emily McLeod is the next guest that we’ll hear from. And she’s a clinical nurse specialist in the live strong cancer institutes.

So why don’t we start with you introducing yourself and tell us a little bit more about your background and how you ended up in palliative care. My name is Emily McCloud and I’m a clinical nurse specialist and I specialize in palliative care. I’ve been working in this role, I guess, for about eight years now, prior to that, I was a critical care nurse at the hospital and worked a lot with trauma patients.

I did that for quite some time. And that actually more than anything, it’s solidified my desire to work in palliative care and end of life because of the types of patients that I took care of and the conversations that I was a part of and the patients that I was advocating for in that role, I also was lucky in that I had a lot of exposure to palliative care in my role as the ICU nurse, we had a great palliative care team at the hospital that I worked at.

And so I was able to kind of interface with them and share patients with them. And I was actually able to. Consults myself. So it was actually through those connections that ultimately kind of led me to go back to school to pursue a master’s degree, which would allow me to work in that role in the way that I was hoping to do.

So I’ll tell you a little bit about a clinical nurse specialist, so sure. Is very similar, at least in Texas, or at least in my role to a nurse practitioner, although that does differ state by state in terms of what a clinical nurse specialist does and what types of roles that person can be in, not all clinical nurse specialists are able to prescribe medications, for example, it all depends on your training.

So in some other states, a clinical nurse specialist is really thought of in a lot of ways as an educator, but really what I liked about clinical nurse specialists compared to a nurse practitioner was that. The clinical piece of the advanced practice role of working as a nurse with a master’s degree, I got this sort of patient care and clinical piece of that, but I also learned a lot about systems and a lot about education, both patient and family, as well as education for other nurses.

And so I really liked how it had a little bit of a broader scope and took some of the kinds of systems things into account as well. And just to back up a little bit, did you first find out about palliative care in nursing school? Or did you have an interest in this room? I didn’t know what palliative care was before nursing school.

So I didn’t have a specific interest in that, but I had always had a lot of curiosity around specifically end of life. And it felt really. Drawn to family members and friends and people who were approaching the end of their life. I felt very, just sort of drawn to those people. And so it was never like a logical decision, like, okay, for X, Y, and Z reason I’m going to pursue this career path.

It was really more of just like something I felt drawn to and wanted to learn more about. And as I learned more about it, I just became more interested in what could I contribute to that? And how could I see myself involved in that? And what would that look like? It ended up just being a path that matched what I was interested in.

Very interesting. So could you tell us a little bit more, what a typical day looks like? What do you actually do with patient? Yeah, so I see patients well before the pandemic, I was seeing patients in person in the clinic right now. I’m still doing a lot of remote work, but I do go into the clinics sometimes on an as needed basis.

And some of that will be changing soon. And so there are a few different things that I address in patient visits that have more pens on what’s happening with that person and where they are and what’s going on. Yeah. I do talk a lot about symptom management, either from the person’s underlying diagnosis, their cancer diagnosis, or from side effects from treatments.

So things like. Pain nausea, vomiting, fatigue, shortness of breath, things like that are things that I will talk about with patients, develop a plan to address those symptoms. And depending on the situation, if there’s a medication that would be best for that person, then prescribing those medications and following up to see the effects to see how effective those things are and making adjustments as needed.

That’s a big part. I do a lot of conversations around goals of care. So I’m always really interested in who people are and making a connection, finding out what’s important to them. What did their life look like before this diagnosis? You know, what are their values, what are their preferences? And I think that helps us really inform, even when it comes to talking about cancer treatment, it helps us latch the treatment.

The goals of the patient. There are times where patients have to make decisions about treatment options and things like that. And of course the medical oncologist will review those treatment options and pros and cons and things like that with them. But a lot of times I will meet with patients and families after those conversations to kind of debrief and to talk a little bit more about what they’re thinking in terms of, of what they would like to choose and why.

And again, helping. Reflect back based on my conversations with them about their goals, preferences, values, sort of reflecting back to them and helping them come to a conclusion that they’re comfortable with in terms of making. Decisions around treatment. Okay. And then the other pretty common piece of my day is discussing what we call advanced directive.

So there are some state of Texas documents, legal documents that can be completed that allow people to sort of give some indication again about their preferences related to things like resuscitation. So if they’re Harper just appealing where they were to stop breathing, what would they want the people around them to do?

You know what they want to have CPR would they want to be on life support measures. And if so, for how long, and, and talking through some of those kinds of things as well, and helping people get those documents in place. And those documents are really used only on kind of urgency basis, but you know, those conversations have to be had way ahead of time and we have to anticipate and be ready for the unexpected and have those things in place for them to be used for.

I can see how that would be so impactful because getting those documents just on your own as a patient sounds terrifying. Well, especially when you’re dealing with, you know, a new cancer diagnosis for exactly how you’re already feeling. Most people, most normal people feel overwhelmed by something like that.

And then you’re, you know, you have all these doctor’s appointments and tests and all these sorts of things that come up and on top of that, trying to ask people to make time to do some of these things or consider completing paperwork. Like this is just another thing. So it’s nice to have somebody to. To kind of help walk them through that.

And I think, yeah, it’s definitely an important, you know, it also opens up conversations with family members. So, you know, one of the forms is a medical power of attorney. And what that does is it says, it allows the patient to say, if I’m ever in a situation where I can’t make my own medical decisions, I can’t talk to the doctors.

I’m not able to communicate my preferences. It allows them to designate a person that they trust to make those decisions on their behalf. But part of that is that. That person that they name has to know what the patient would want for themselves. So their job is to be the voice of the patient. It’s not to make the decision that they want for the patient it’s to make the decision that the patient would want for themselves, if they were able to be in the room and to hear what the doctors are saying and things like that.

So, yeah. People to feel, you know, the medical power of attorney to feel comfortable making decisions, or at least as comfortable as possible that requires the patient and their medical power of attorney to have a lot of challenging conversations about things that person would maybe want or not want.

And many people have no experience with being in the medical system. So they don’t even know what things to consider, you know? Exactly. So those conversations are really important in that paperwork. It’s really important as well, but the paperwork also helps us open up some of those conversations sometimes.

Yeah. That’s really interesting. When you were talking about talking through goals with patients and talking through what’s most important to them and then tailoring treatment for that. Do you have an example of maybe a patient you’ve taken care of recently of what they found most important? What were their goals?

And then how did you tailor treatment? Yeah, I can think of one that has like a very sort of straightforward one. A lot of times there are some more kind of nuances to these things, but we had a patient recently who we had been caring for for a couple of years, actually was an advanced cancer that over time, you know, did continue to progress as we had anticipated.

And she had had a couple of hospital visits, a couple of emergency room visits and full sort of hospital admissions. And she was really struggling with having to be in the hospital. You know, this was a person who was very active, was used to doing a lot of traveling, had been very independent for her entire life.

And it was really hard for her to be in the hospital and to be in and out of the hospital. And it got to a point where she was very clear that she did not want to go back to the hospital. So our questions around that, we sort of explore that a little bit more together. And part of that was, well, what happens if things get worse or you start having problems and you don’t want to go to the hospital, the question is how do we help support people in those situations?

And yeah, for this particular person, you know, she was somebody who really was nearing the end of her life. And there were some kind of potential options for other. Clinical trials or things like that in terms of treatment, the standard treatment options were pretty much exhausted. And so the discussion was in around.

Are there any sort of experimental clinical trials, things like that, that she might be able to participate in, but those themselves clinical trials have a lot of protocols, a lot of testing. It’s a big time committed. As well, and always not a lot known on the other end about potential for side effects or toxicities, which also could lead to hospitalization in some situations.

So really having those conversations around her desire to stay out of the hospital, which had become really important to her, allowed us to help make a transition to hospice care. Which was really what she needed based on her goals and her preferences at that stage of her disease and her, her cancer journey.

So that one was a little bit more straightforward in some ways, because she was very clear. She didn’t want to go to the hospital and the best way we knew how to keep her out of the hospital, knowing that she would ultimately die of her disease was to help make sure that she had the support she needed at home to be comfortable and to get her needs met there.

Definitely. What are some of your favorite parts of doing this work and what are some of the general. I think my favorite part of it really is just connecting with people, being able to have meaningful conversations and connecting with people that I in my life outside of work may never have come in contact with or things like that.

You know, and I personally, and many people who go into these sort of helping professions, I was a person who wanted to see, like how could I make a difference to other people? And there are many ways to do that. It’s an infinite number of possibilities, but finding something where, to me, it wasn’t just about.

Ordering a lab or doing a physical exam. Those are important things, of course, but I really was also interested in sort of just the interpersonal nature of this work. And that’s what I still get a lot of enjoyment and satisfaction out of. And then in terms of the challenging things, the flip side of that coin is also.

We’re all human beings. And while it’s always important to remain professional in your role and things like that, when you do connect with certain people in certain ways that sometimes you do develop close relationships with them. And so it’s always hard when somebody dies that you’ve been close with or spent a lot of time with them.

Of course, that’s always challenging, but I think the more frustrating parts of my job are really more things related to our healthcare system as a whole. And a lot of things that have a lot of just challenges with insurance companies and payer systems and things like that are the things that really feel difficult on a day to day basis.

Yeah, that makes sense. So what are some of the career path options for someone interested in this specialty? I think there are a lot of options where you can work in a lot of different roles within hospice. Specifically, hospice is a little bit different in that they have. In home hospice available, hospice can also be provided in an inpatient setting.

So like in a hospital. Similar to other parts of healthcare, they are medical assistants or clinical assistants who do a variety of functions, just depending on what setting they’re in. And then they do things like checking vital signs of blood pressure or oxygen levels, measuring urine output, helping with bathing and transferring people from bed to chair and things like that.

Safety, a number of different things, but that’s what a medical assistant’s role might look a little bit like that you could be a nurse. Hospice or palliative care, it’s less common with palliative care, just because it’s the footprint of palliative care is not quite as big, at least at this point, but you could be a nurse or an RN working in hospice or palliative care.

Then, then in terms of sort of advanced practice roles, uh, physician’s assistant clinical nurse specialist or nurse practitioner could all work in. Hospice or palliative care roles, whether that’s in an inpatient setting or in an outpatient setting like a clinic. And then certainly there’s always the career path of becoming a physician as well.

So those would probably be the most common ones, but also there are hospice and palliative care, social workers. Which are super important. There are hospice and palliative care chaplains. And so there are really all levels of the team depending on what someone’s interest level. Okay. So this is actually my last question for you.

Could you reiterate why this work is so important to patients and to you personally? Yeah. I mean, I think for patients, so many people are impacted by cancer, whether it’s as a family member or as somebody who has been diagnosed with cancer, historically, we’ve been really good about patients seeing doctors, getting treatment plans and getting treated for their disease.

We haven’t always been quite so good about focusing on the aspects that really allow people to engage in their lives and live their lives while they’re undergoing. Or even while they’re not undergoing treatment unit, regardless of what their trajectory is. Some people choose not to undergo treatment again, related back to those goals of care conversations, but either way, it’s really some of the other things that’s not really the chemotherapy or the radiation or whatever that helps people.

Engage and live their lives while they’re experiencing cancer as really a lot of the other things like feeling as good as you can feel an equality of life measures and quality of life means different things to different people. And so that’s, again, something that we really try to explore a vice, I try to explore in those visits with patients is what does quality of life mean to you?

And then how can we help people have the best quality of life as possible? So again, a lot of times physical symptoms are limiting factors for people. If you’re not feeling well enough then, but you’re not going to be able to get up and go to your son’s baseball game. That’s really important to you or whatever.

And so I think just having that focus and having people who are asking those questions about what is it that’s important to you, or what is it that you like to do and how can we help you be able to continue to do those things as much as possible for as long as possible. So I think it really can impact people’s everyday experience and I’ve seen that.

And so that piece of it can be really. Rewarding on my end on the providers. And because you see that you are affecting things and that you are. A really tough thing. Maybe a little bit easier for somebody. And I think especially around true end of life. I mean, when people have a cancer diagnosis and not just cancer, I mean, this also applies to many other disease types, but when people get a diagnosis like that, people can be in a really vulnerable place.

And especially when you’re talking about end of life. One of the most vulnerable states that people can be in. And so I think with that, I think that’s why it’s scary to some people, even on the medical professional end of things, it can be scary, um, to enter into that space with people sometimes, but it also gives a really huge opportunity to make a difference in somebody’s life.

However, big or small also as a society we historically, or at least in the recent past are not great about talking. Mortality and the fact that we’re all going to die. I think in some ways that makes it a lot harder because it’s not something that’s talked about openly in the past also many years ago.

Right. If somebody died, they were cared for by the family and the home, there were homeless funerals. There was a lot more. Involvement by family members. The young children had been around people who had died and it wasn’t quite a thing that was kept behind the curtain. And now it’s not really talked about that much in children are shielded from those sorts of things.

And I think there’s a lot of fear that goes along with that, stepping into those really vulnerable places with people. I think being in that space with them also allows you on a unique opportunity to really make a difference.

Thank you to Emily McLeod and Dr. Elizabeth quality for sharing their time, expertise and wisdom with us today. If you have questions or if you have other topics that we can uncover, please email us at live strong cancer institutes at Dell med dot U, texas.edu. And make sure institutes is. You can find out more about the live strong cancer institutes@dellmeddotutexas.edu.

And about the live strong cancer institutes clinic at UT health, austin.org. You can also follow our chair and director Dr. Gail Eckhart on Twitter at S Gail Eckhart. Eckhart is spelled E C K H a R D T. If you enjoyed this episode, please make sure to subscribe. I’m Laura pavatt and this is cancer and.

Thank you for listening.