Improving Quality of Life through Palliative Care

No one is ever ready to hear that they have a life-changing diagnosis. For patients and families, this news brings a whirlwind of emotions, fears, and uncertainties. This is especially true for patients who are diagnosed with lung diseases that can make it difficult to breathe, profoundly affecting daily life and leading to significant physical and emotional suffering. This is where palliative care comes in. Palliative care offers an interdisciplinary approach to treatment. that goes beyond addressing only the medical aspects of a disease. It's not just about managing pain. It's about enhancing quality of life at every stage of illness and addressing the various needs of patients, their families, and caregivers when navigating life with a serious illness. By focusing on quality-of-life palliative care, palliative care ensures that patients are met with compassion. and treated with dignity as they face the challenges of a serious illness. In this episode of Science Never Sleeps, we're joined by Dr. Kathleen Lindell, associate professor in the College of Nursing and the Mary Swain Endowed Chair in Palliative Care. Dr. Lindell has extensive clinical experience working to improve support available to patients with idiopathic pulmonary fibrosis, or IPF. She's a graduate of the University of Pittsburgh School of Nursing. where she received her bachelor's and master's of science in nursing, as well as her Ph.D. Her research focuses on promoting palliative care knowledge and preparedness to improve the quality of life for patients with advanced lung disease, specifically IPF, and their caregivers.

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[00:00:07] Gwen Bouchie: No one is ever ready to hear that they have a life-changing diagnosis. For patients and families, this news brings a whirlwind of emotions, fears, and uncertainties. This is especially true for patients who are diagnosed with lung diseases that can make it difficult to breathe, profoundly affecting daily life and leading to significant physical and emotional suffering. This is where palliative care comes in. Palliative care offers an interdisciplinary approach to treatment. that goes beyond addressing only the medical aspects of a disease. It's not just about managing pain. It's about enhancing quality of life at every stage of illness and addressing the various needs of patients, their families, and caregivers when navigating life with a serious illness. By focusing on quality of life palliative care, palliative care ensures that patients are met with compassion. and treated with dignity as they face the challenges of a serious illness.

In this episode of Science Never Sleeps, we're joined by Dr. Kathleen Lindell, associate professor in the College of Nursing and the Mary Swain Endowed Chair in Palliative Care. Dr. Lindell has extensive clinical experience working to improve support available to patients with idiopathic pulmonary fibrosis, or IPF. She's a graduate of the University of Pittsburgh School of Nursing. where she received her bachelor's and master's of science in nursing, as well as her Ph.D. Her research focuses on promoting palliative care knowledge and preparedness to improve the quality of life for patients with advanced lung disease, specifically IPF, and their caregivers. Stay with us.

[00:01:50] Bouchie: Dr. Lindell, welcome to Science Never Sleeps.

[00:01:52] Kathleen Lindell, Ph.D., RN, ATSF, FAAN: Thank you for inviting me.

[00:01:55] Bouchie: So you have made quite an impact through your career working in the area of palliative care, both in the clinical setting and as a researcher, and particularly through the lens of nursing. Can you tell us a little bit about how you got started in this space and what really brought you to palliative care as an important issue in health care?

[00:02:18] Lindell: Yes, thank you. So early in my career, I was a critical care nurse in the medical ICU. And I saw many patients face serious illness and saw the impact that it had on the patients and their family members. And so as I gained additional knowledge and my career advanced, I took some side roads. I was. an instructor in a school of nursing. I was a clinical nurse specialist, which means I have a master's degree in pulmonary nursing. And I also was a nurse manager of an emergency department. So I saw many people with serious illness throughout all ages, from young to older. And I started in 2000 as the pulmonary clinical nurse specialist at a brand new specialty center called the Dorothy P. and Richard P. Simmons Center for Interstitial Lung Disease at the University of Pittsburgh. And this center was started by a gentleman whose wife died from idiopathic pulmonary fibrosis. And He gave us three charges, find the cause, find the cure, provide patient education and support.

So as the clinical nurse specialist, I was directed to begin a patient support group, and I also was the nurse who went with the physicians to clinic in the outpatient setting. And in working with these patients and their caregivers, I would do their history, and in doing their history, I would often see like, wow, they really have a lot of symptoms that cause them to be suffering. And it seemed that they didn't necessarily know the disease impact of this disease. And then about a year after I was there, my advisor from graduate school approached me to go back and get my Ph.D. in nursing. And so I started and I continued to work in that center and at my Ph.D. program, one of the assignments is that you have to come up with your research question. Well, it came very easily to me. What is the disease impact of IPF?

So I did a pilot study with patients and their caregivers, and just to see how they were impacted by shortness of breath, cough. fatigue, anxiety, depression, what was their quality of life, and did they have social support? Social support is defined as someone that helps to care for them, brings them to their appointment, and surprisingly about 25% of the patients that we worked with did not have social support. But what we found in this study, this was a pilot study, was that if you had good social support defined as someone to help you through your disease journey, that those patients had a better quality of life and vice versa. That led me to do my dissertation, which was entitled, A Program to Reduce IPF Symptoms and Improve Management. And what we did was, this was a six-week course where patients and their designated caregiver were randomized to receive the intervention or not. And the patients that received the intervention, they came every week for six weeks, and it was a two-hour course, and they learned all about the disease and how to live with it.

So I proceeded over the next semester to do home visits. of these individuals and I interviewed the patient with IPF and the caregiver separately. And it is one of the most meaningful things that I've ever done in my career. When you're in the home setting, you see how they deal with supplemental oxygen. You see how many stairs they have. You see how close it is to town. You see how close it is for the oxygen provider, the durable medical equipment, to come and deliver their oxygen. So the findings of that study showed that when they get the diagnosis, they don't know what it means. You think idiopathic pulmonary fibrosis, that's 12 syllables. And a lot of times it's not even presented in the proper format. And so you compare that to someone who has lung cancer. Lung cancer is three syllables, and you're like, oh, that is not good, I could die of this. And they said by attending this program, they... it gave them a perspective about their disease. It also really helped them to see other people living with the disease. And those were two of the main findings. And then the caregiver stress decreased significantly because they knew what to expect going forward. And lastly, every single one of them said that while participating in research may not help me, it's important that I do this to help others down the road.

[00:08:07] Lindell: So I graduated. It took me a couple years to recover because I was working full time. I had a young family. And then I started to see that patients, they'd come to see us in clinic. And just to give you some background, so idiopathic pulmonary fibrosis is unknown lung scarring. And it affects predominantly white males. age 60 and above, but it also impacts women. And now we know is that because of disparities, there are many other patients of different races who have the disease who are misdiagnosed. And so what I did is I started to see that patients would be admitted to the hospital. They have what's called an acute exacerbation. like a really like a steep decline in their disease. They end up in the intensive care unit. They end up on a ventilator and most likely they're not gonna leave the hospital. And that led me to my next study, which was where is, where do patients, where did our patients with IPF die and did they receive palliative care?

I realized that I needed more information, so I applied for this course, and I was accepted at Virginia Commonwealth University, and it was led by Pat Coyne. who was the former director of the palliative care program here. And I like to say that is what transitioned my career to focus on palliative care. Because I realized that, yes, these patients that we're seeing with advanced lung disease, pulmonary fibrosis, advanced COPD, other advanced lung diseases, they're suffering and they're not receiving the palliative care that would help them throughout the course of their disease. So then I refocused to palliative care and I received funding and we did focus groups with patients. pulmonary fibrosis, we did with the caregivers, and we did caregivers of patients who died from pulmonary fibrosis. Three specific, or three separate support groups. And what we found were there were four major themes. One, they didn't think that we provided them enough education. Two, they didn't know what the word palliative care was, but they didn't like it. Three, they had tremendous symptom burden. to the point that the caregivers were impacted by symptoms such as coughing. And then four, that they felt comforting coming to a specialty center because we had a support group. They met other people going through the same thing.

[00:11:09] Bouchie: Last time you were a guest on Science Never Sleeps, you discussed program of support, which is a palliative care intervention that you developed for patients with idiopathic pulmonary fibrosis or IPF. Can you give us a refresher on what that program is?

[00:11:27] Lindell: I developed what's called this program of support and it is based upon my clinical experience in that clinical practice and also from my Ph.D. work. And so Program of Support is a book that I wrote. And support stands for symptom management, understanding your disease, pulmonary rehab, palliative care, oxygen therapy, research participation, and lung transplantation. So all the things that I thought were really critical that these patients and their caregivers knew to help them, provide them with knowledge for this disease journey. And I received funding from the National Institute of Health. And we studied this intervention in 76 patients with IPF and their caregivers. And what we learned was we were looking at feasibility, acceptability, and impact.

So then I moved here. and became the Mary Swain Endowed Chair and pivoted and refocused my career to really like advance palliative care, you know, education, clinical practice and research, just the benefits of it. And at MUSC, we are so fortunate. Dr. Carrie Cormack has built this amazing education in palliative care so that every single student in our College of Nursing receive competency that they can say when they graduate, I'm competent to be able to know about palliative care. And it's through the ELNEC program, which is the end-of-life nursing education consortium. So all of our undergrads receive it, all of our graduate students also receive it. And I think close to 70% of our faculty are also receive this education. And so for the education piece, we're doing great. The clinical practice piece, we're doing great. The research, we're growing this effort.

And so I received funding from the South Carolina Telehealth Alliance shortly after I came here and to make support, a program of support into a digital intervention where we can go into the patients wherever they are. and provide this. And I have submitted for funding and we're waiting to see, you know, to hear back about that. But with this, what we've learned over the years is, as I started to mention before, there are patients that have pulmonary fibrosis that have not been diagnosed. And the wording has changed from, they're still idiopathic pulmonary fibrosis, but the bigger umbrella is progressive pulmonary fibrosis. So we know that other diseases can cause pulmonary fibrosis. So that here's an example. So people have like autoimmune diseases like rheumatoid arthritis, scleroderma, mixed connective tissue disease, which often affect young black women. And they get progressive pulmonary fibrosis. So of... progressive pulmonary fibrosis, IPF is now a subset. And so now we're going to, our goal is we want to reach these other patients who have progressive pulmonary fibrosis. Their disease course may be different, but it's still, they have a lot of symptoms and palliative care can be important for them to help reduce suffering.

[00:15:12] Bouchie: So let's talk about palliative care as an issue in itself. I think when, perhaps when a lot of people think of this, where it originally came from is this idea that someone is terminally ill and they are rapidly declining maybe. I think a lot of folks might align it with hospice. You know, you think of these things interchangeably. Can you talk a little bit about the specifics of palliative care and what we mean when we talk about that as a service or as a part of healthcare?

[00:15:46] Lindell: Yes. So the root word of palliative care, the Latin word, is to, it means palliate, to cloak or to embrace someone and cover them and, you know, provide comfort. And how we like to describe it, it is an additional layer of support when someone is diagnosed with a serious illness. thought to have less than six months to live. Something that's really important is that palliative care can be offered across the lifespan. So before a baby is even born in the antenatal phase, all the way through geriatric care. But depending upon the serious illness, a patient can graduate from palliative care because their symptoms have been cared for. Whatever the issue is, it's resolved.

[00:16:46] Bouchie: So you don't have to, once you're on or receiving palliative care, you may not always receive that care.

[00:16:52] Lindell: Correct. So palliative care, there are a few different definitions out there, but if you break it down it's... specialized medical care for patients with serious illness. And it can go even like down divided by two, like to symptom management and to preparing for end of life. And not meaning that end of life is tomorrow. It's just like, what would you want when you can no longer make a decision? So back to the symptom management. We know that serious illness, depending upon the serious illness, patients might have a whole plethora of symptoms. So I'll use advanced lung disease. We know patients will get short of breath. We know they have a high likelihood of cough, fatigue. There's a lot of anxiety and depression. So those are all symptoms that there are both non-pharmacological. and pharmacological therapies that can help these individuals when they face these symptoms. So there's no need to suffer in silence.

[00:18:06] Bouchie: And then on the end of life side, that comes in when you're presented with an illness that may be bringing that more rapidly than something else?

[00:18:16] Lindell: Well, there's no way to predict the disease course, especially in IPF. particularly, it is very unpredictable. So we just encourage that people do advanced care planning. And so that breaks down to when the time comes, what do you think that you would want? Do you want to go on a ventilator? Do you want to have a breathing tube down your throat? And when you can't make those decisions any longer, have you selected someone that can be your decision maker and be your voice when you can no longer make those decisions? And the most important aspect of that is it's not etched in stone. It can change.

[00:19:07] Bouchie: So how does someone access palliative care if a patient or even a caregiver wants to seek out something like this?

[00:19:15] Lindell: Individuals will often ask, well, how do I get palliative care? And sometimes they'll ask their physicians or their providers who will say, well, you don't really qualify for it yet. Or you don't need it or we don't have it in our area. And I like to give this example. So there's this incredible resource at CAPC and it's called getpalliativecare.org. And I'll give this example. I had somebody reach out to me and said, I have a patient who has pulmonary fibrosis who lives in Louisiana. And their doctor said, we don't have palliative care around here. And she said, do you think that's true? And I said, well, there's an easy, objective way to figure this out. I said, let's go to this website, what's the person's home zip code? We plugged it in, and six places came up within a 30-mile range. Wow. So this, and individuals, patients can ask for it. So it, and it's most often covered by insurance. And it's really, it's something that people with serious illness should receive. And it's really just going back to that, it's an extra layer of support to help prevent suffering.

[00:20:50] Bouchie: So you told us a little bit about the program of support. Can you talk about the different versions that may have emerged over the last few years that you've been working on this?

[00:21:01] Lindell: Yes, so it's very exciting. We have a few different versions. So while I was at Pitt, We also did a program of support dash C. So that's for patients with advanced COPD. We have not studied that yet. One of the faculty that I mentor, Dr. Diana Lane in the College of Nursing, she has adapted it for patients with dementia and early Alzheimer's. And so it's a program of support dash. And she received research funding from MUSC, and she has studied this, and she's in the final phases of reviewing the data. And her study findings look very promising. But just like an idea, like just to like support for her, like the O is an oxygen, it's ongoing conversations. The S is safety. or one of the P's rather is putting safety first. So she's just adapted the acronym. I have a Ph.D. student who I'm mentoring in the Netherlands who adapted it to Dutch. And one of our goals in the next year is to adapt it to Spanish.

So I've just submitted a grant to look at studying and support T in rural South, in two separate populations. Rural South Carolina, can we get into homes of patients who might not have access normally? And we would help to provide if they don't have broadband or a device, we're going to, we can help to provide that. And then the contrast is going to be New York City work. partnering with Mount Sinai. And the physician there, Dr. Maria Padilla, she said to me, she has been asking me for a while to be involved, and she said what is really important, she said I have a lot of young women who don't have access to resources, who she said would benefit greatly from this.

[00:23:28] Bouchie: Yeah, so I wanna follow that line of thinking because you mentioned earlier some of the the groups that are specifically impacted by IPF. But I imagine there are lots of, when we look at social determinants of health, that impact access to the type of wraparound services that palliative care might provide. So is there research looking at how those types of elements impact access to care and how to improve it?

[00:23:59] Lindell: So we have, at MUSC - I don't know that it's a center per se - but it's community engagement. So we're actually, that's one of the things that we wanna look at is if we can get into the community, how can we use pastors, for example, to help spread the message that this is safe and it's helpful.

[00:24:27] Bouchie: Right, because you mentioned earlier that sometimes just even the. the phrase is off-putting and folks don't even know what it means and so that could probably be a very big area.

[00:24:35] Lindell: Right. And so one of the things to be mindful of is over the past few years, there's been a change. There is what's called a Center to Advance Palliative Care, and it's out of Mount Sinai in New York City. And so they talk about palliative care, they talk about hospice, they actually have an incredible amount of resources. But there's been this move to get away from using the term palliative care and just say serious illness. So you've been diagnosed with a serious illness. We have resources that can help to make you more comfortable.

[00:25:15] Bouchie: Right. And so how are you working to connect clinicians and researchers in this area? I imagine these are conversations that have to continue to be had as you're refining language and the way that that this outreach is done and beginning to subscribe to best practices because you're beginning to build an evidence base. So how are you working to connect folks to bring all of this into communities?

[00:25:41] Lindell: So we're really fortunate here because MUSC has been doing this for a while. As I mentioned before, Pat Coyne really grew the palliative care program and the clinical program is really very strong. He retired, now Dr. Conrad Smith and Dr. Christina McDaniel are leading this palliative care program and the COVID-19 pandemic really catapulted or accelerated the use of palliative care. And palliative care is now available across the MUSC Regional Health Network and individuals palliative care via telehealth. So they have really just, that continues to grow. And as I mentioned, our education is continuing to grow. Our education, people actually reach out to our education program to how can we work with you so that our faculty can learn more, our students can learn more. And in addition, that is in a national vein, but also in an international vein. And Dr. Cormack and members of the Palliative Care team actually work with the ELNEC program and they go and teach internationally.

And then for the research, we are seeing an increased interest in students wanting to have their Ph.D. or their DNP focused in palliative care. We do have a DMP. in palliative care that was started in 2020. We are now also starting to see, we had our first graduate in the fall of 2023, who her area of focus was palliative care and women with COPD. And we have another, like probably three students right now that they specifically are coming to our College of Nursing because of their interest in palliative care. I also work with the College of Health Professions with Dr. Scott Hutchinson, who teaches in the, it's the OTD, it's the Occupational Therapy Doctorate. And we have our first student who, she is getting her doctorate in occupational therapy, and she's very interested in having, you know, expertise in palliative care competency. And then we also have faculty at, specifically in the pulmonary division, who they're very interested in palliative care, looking at palliative care and their specific disease. So Dr. Denise Sese is looking at palliative, the role of palliative care and pulmonary arterial hypertension. Dr. Rachana Krishna is looking at the role of palliative care, particularly in women with connective tissue diseases. So we're starting to see this, and this is just like the tip of the iceberg.

And one of the events that we started shortly after I came here, it's called the MUSC Palliative Care Showcase. So this year we'll have the third annual. It's in November. November, Tuesday, November 19th, 2024. It will be in the College of Nursing, but the focus is on interprofessional palliative care and it's advancing education, clinical practice and research. And what we do is we have an invited keynote speaker. This year it's Dr. Cara McDermott. She is a PharmD at Duke, but she has... did her post-doctoral studies in palliative care at the University of Washington under Dr. Randy Curtis. And so she brings that interprofessional perspective from the pharmacy. And then we will also have other speakers and then we're gonna have, new this year, a two-hour poster presentation that's going to be in person. And so that the whole intent is that people can share their work and they can learn from each other and hopefully more successful collaborations, but most importantly at the end of the day, improving the care for patients with serious illness and their caregivers.

[00:30:27] Bouchie: So what makes you the most excited about what's next for this field? I mean, there's so many things that you've talked about, but what do you think the future holds for palliative care?

[00:30:41] Lindell: So I will put my bias right out. I think it's the essence of nursing. And it's when you ask most nurses, this is why we came into the field is to care for patients. And what excites me is to see the growing interest in all types of health professionals in wanting to advance palliative care and advance their own knowledge, become more, competent, all with the end goal of making sure our patients with serious illness receive the best care.

[00:31:18] Bouchie: Which is really where nursing lives, which is providing care for people as they're going through their health journeys.

[00:31:26] Lindell: Yes.

[00:31:27] Bouchie: Yeah, that's great. Well, thank you for joining us, Dr. Lindell.

[00:31:30] Lindell: Thank you.

[00:31:32] Bouchie: We've been talking to Dr. Kathleen Lindell about palliative care in lung disease. Have an idea for a future episode of Science Never Sleeps? Click on the link in the show notes to share with us. Science Never Sleeps is produced by the Office of the Vice President for Research at the Medical University of South Carolina. Special thanks to the Office of Instructional Technology for support on this episode.