A Program of SUPPORT: Pulmonary & Palliative Care with Kathleen Lindell, PhD, RN, ATSF, FAAN

During the COVID-19 pandemic, pulmonary support and palliative care have become critical healthcare needs. 

Dr. Kathleen Lindell is well-versed in these issues. An 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 PhD.

Dr. Lindell’s passion for her patients and their caregivers has led to the development of a palliative care intervention entitled, A Program of SUPPORT, which is symptom management, understanding the disease, pulmonary rehabilitation, palliative care, oxygen therapy, research participation, and transplantation.

Read The Transcript

[00:00:03] Loretta Lynch-Reichert: Hello, everyone, and welcome to the Medical University of South Carolina Science Never Sleeps podcast. Today's conversation may well have been uppermost in many of our audience's minds after the COVID-19 pandemic took hold, worries of pulmonary support and palliative care. Luckily, today's guest, Dr. Kathleen Lindell, is well-versed in these issues.

An 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 PhD. Dr. Lindell's passion for her patients and their caregivers has led to the development of a palliative care intervention entitled, A Program of SUPPORT, which is symptom management, understanding the disease, pulmonary rehabilitation, palliative care, oxygen therapy, research participation, and transplantation. Welcome, Dr. Lindell.

[00:01:21] Kathleen Lindell, PhD, RN, ATSF, FAAN: Thank you for this opportunity.

[00:01:24] Lynch-Reichert: Dr. Lindell, I'd like to start with an understanding of what idiopathic pulmonary fibrosis is. Can you explain that?

[00:01:31] Lindell: Yes. So, idiopathic pulmonary fibrosis is defined as unknown lung scarring. So there's no known cause and there's no known cure at this time. And what we know is that patients who receive this diagnosis, it tends to happen more so in males compared to females, but we are seeing an increase in other types of progressive pulmonary fibrosis in patients who get this diagnosis. And what we know is for those patients who are diagnosed with idiopathic pulmonary fibrosis. Median survival is approximately 3.8 years.

[00:02:20] Lynch-Reichert: Wow.

[00:02:21] Lindell: Now, what that means is that median, right in the middle of all people who have the disease. The disease course is unpredictable and there's no way to predict how one person's disease course will be in comparison to someone else. There are some individuals that their disease will progress very rapidly, and they may be deceased in one year, and then there are some that will live eight to 10 years. So the disease course really is unpredictable and it causes a lot of challenges for both patients, their caregivers, and the healthcare professionals who see them.

[00:03:09] Lynch-Reichert: I can imagine, it sounds like the range is far-reaching with no known understanding of how the disease really occurs. Is that a fair statement?

[00:03:19] Lindell: Yes.

[00:03:20] Lynch-Reichert: Okay. So no wonder you wanted to do something to make a difference for those suffering from this disease and for those, indeed, who care for them. And why did you expand your expertise to include palliative care? Which I would understand to be end-of-life care, but perhaps not. And I ask that question because, as you noted, there is such a range between fatalities or mortality, I guess, is what I should say, in that disease. Can you talk to us a little bit about that?

[00:03:48] Lindell: Yes. So, it evolved as a natural progression of the work that I did when I was at the University of Pittsburgh. I was the pulmonary clinical nurse specialist in the Dorothy P. and Richard P. Simmons Center for Interstitial Lung Disease, and my role was to provide education and support. And I would see patients in clinic with our physicians and I would see them before they would go in to see the physician. And then I'd see them when they came out. And I would think, wow, this is not necessarily a good story. I wonder how the patient will respond when they come out. Often what I saw was that patients maybe had a blank stare on their face, and I realized they didn't understand or appreciate the impact of the disease. And one of the reasons, the problem is "idiopathic pulmonary fibrosis" is 12 syllables, and so from a literacy standpoint, you could be the smartest person in the world, but if you don't understand medicine, it could be challenging to understand exactly what is idiopathic pulmonary fibrosis.

So I started back to get my PhD in nursing at the University of Pittsburgh, and my research question was, "What is the disease impact of IPF?" What we learned was that patients had a lot of anxiety and depression because they didn't know exactly what they had. In addition, their quality of life was impacted, mostly if they had good or bad social support. So what that means is if they had caregivers who were available to help them, they had a better quality of life and vice versa, which, I mean, when you think about that, that makes sense. I hope you have someone there to help you through this course.

There also was a lot of confusion about what this disease was, especially when they go back to their home community. Just to give you kind of an idea, these patients experience progressive shortness of breath, cough, fatigue, anxiety, and depression as their disease advances. And they get this diagnosis and they go home to their community and their loved ones, family, friends want to know, "Well, what did the doctor tell you that you have?" And they would often say, "I don't remember all the words, but I remember 'fibrosis.'" It's very common and we've talked about this in the United States, this happens frequently. Their loved ones would say, "But fibrosis, I thought that was cystic fibrosis and that only happened to kids." So we already know that there is a problem with understanding of the disease.

[00:06:54] Lynch-Reichert: Right, as opposed to if you were diagnosed with lung cancer, you'd immediately get a feel for that as opposed to fibrosis, you're absolutely right.

[00:07:02] Lindell: And that is an absolutely great example, and I use that often to say that if someone told you were diagnosed with lung cancer, the natural response is, "Oh, my goodness, this is not good." Whereas, if you're told you have idiopathic pulmonary fibrosis, it's three syllables versus 12 syllables, so it's a big difference.

[00:07:25] Lynch-Reichert: So understanding that palliative care, especially as you are explaining it, would be a vital part of the patient's understanding and well-being management of the disease. Tell me a little more about SUPPORT, which you developed, which is trademarked, and how that is integrated into the care system and how you see it being integrated at MUSC eventually.

[00:07:52] Lindell: Okay, thank you. So based upon my clinical experience, I realized that these patients and their caregivers had a lot of need for education and being prepared for the disease course. Palliative care, it's an extra layer of support, that is the best way to describe it, when any patient is diagnosed with a serious illness. And it can begin at the time of diagnosis alongside curative treatment. Hospice or end-of-life care is when the patient is thought to have less than six months to live. So if you think of this disease course for this patient, which we know is unpredictable, but what we do know is, as it progresses, they'll have more symptoms. Palliative care is just critical because it can help patients with symptom management, there are medications, there are pharmacologic and non-pharmacologic therapies that can be provided along the disease course while the patient is still perhaps participating in research studies, being considered for a lung transplant. There are two medications that are now available for patients with pulmonary fibrosis called anti-fibrotics, and they're thought to delay the disease, they don't stop the disease. But palliative care can be provided, and we endorse that it should be provided alongside the treatment course for the patient.

A Program of SUPPORT, this came to me just based upon, as I said, my clinical experience. In working with these patients, and I worked at the University of Pennsylvania for 10 years with patients with general and advanced lung disease in an outpatient setting. And then I worked at the University of Pittsburgh in the Simmons Center for 20 years. And so, as a pulmonary clinical nurse specialist, I saw firsthand what these patients endured. My dissertation study was a disease management program where I actually did a six-week course to teach patients and their caregivers about everything that I thought that they should know about their disease, from what the definition isto what's available to help you, and what ended up happening is at the end of the course, I did a course evaluation and there was unanimous agreement from the patients and their caregivers that they wrote, and they said everyone who gets this diagnosis should have to take this course. I was still in the midst of my PhD and I ended up, my mentoring team said there’s something in that data that you have to unveil. So I did home visits across Western Pennsylvania with the patients who participated in the intervention arm. I interviewed patients and caregivers separately, and there were four important takeaways.

The first was that caregiver stress decreased significantly. And what the caregivers relayed was that they now know what to expect and how to be prepared. Patients and caregivers said that what they learned was that when they go home from the doctor's office, they often are socially isolated. They didn't know other people who had this disease. So what this group provided was a network for them, a little cohort of people who had similar, and they said that it helped to give them perspective of, "Geez, I'm not so bad, “or, "Oh, wow, did you see that other person? “That group connected-- it was really very intriguing to see how they connected, and they were just so hungry for information. But then lastly, the most important thing was they addressed that I know this might not help me, but it's really important to me to participate in this research that I can help people moving forward. So I had that in the back of my mind and I continued to see these patients would go with the doctors in the ICU, and I remember that there was often a lot of confusion the caregiver's part when a patient was at end-of-life about, "I didn't realize they were going to die. “And so I created this intervention called A Program of SUPPORT. It’s a book, and it's gone through many iterations. So I started-- "SUPPORT" came to me and the acronym, as you described earlier: symptom management, understanding your disease, pulmonary rehab, palliative care, oxygen research, transplant, all important things that a patient and their caregivers should know about.

So I wrote the first draft and then I took it to clinic and showed it to our nurses in the clinic and I said, "Okay, what am I missing? What do we need to include in here? “And they're like, "We love it, can we just use it?"

[00:13:08] Lynch-Reichert: I love that!

[00:13:09] Lindell: We're not there yet. So then I showed it to different physicians, including at the time the medical director of the Pulmonary Fibrosis Foundation. He was very helpful to me to describe the variable disease course. And one of the things that he said is sometimes patients go on the internet and they see this, "Oh, my goodness, 3.8 years. I only have this much time left. “And he said the best way to describe it is the average male is 5'7.Think of how many males that you know are 5'7.That's kind of like similar to your disease course. It could be different for everyone, so the important thing is to take really good care of yourself to achieve the best quality of life. So then we tested it in two patients, and they liked it, and then I got funding from the National Institute of Nursing Research to do a randomized control trial. And we did that in 76 patients with IPF and their caregivers, and this was just finished last year and just published in May of this year in the Annals of American Thoracic Society.

[00:14:22] Lynch-Reichert: Congratulations, that's incredible.

[00:14:24] Lindell: Thank you, and what it showed, again, caregivers had significant improvement in knowledge, preparedness, and confidence in caring for their loved one. Patients had an improvement in knowledge and an improvement in advanced care planning. Our only issue was that because patients come a distance often for their visit and it's a long day, we had aligned the research study with their clinical visit, and we were able to recruit 56% into the study, but 24% said, "I would really like to stay and participate, but I'm too fatigued. It’s just been too long a day, and maybe I'll do this next time. “And so we have submitted a grant to look to see, can we adapt this to telehealth delivery of this intervention in the patient's home where they are? So that's the next step.

[00:15:28] Lynch-Reichert: Well, and it's interesting, because my presumption would be that although COVID is not IPF, it is certainly a lung disease with a range of symptoms and outcomes, and I can imagine because it's also, at least for us, a new disease that the need for the SUPPORT program would be just as necessary for the COVID-19and of course, people using telehealth quite a bit. So I can't imagine that this won't be a successful venture to be able to do this via telehealth not just for the IPF but also for COVID.
And then I noted that you're also looking at other diseases such as dementia, so I mean, it seems like it's the outline, the infrastructure for a multitude of opportunities for patients and caregivers.

[00:16:21] Lindell: One of the things that COVID has done is it has catapulted the palliative care program here at MUSC into the forefront. They have been exceedingly busy. And anyone just has to watch the news or read to see that some of the disease course the patients with COVID experience dying alone in a hospital without a family member allowing to be in, and palliative care was there. They were the people that were holding these people's hands. They were having the conversation with a tablet with their family member to say goodbye. COVID just really accentuated the importance and the value of palliative care.

And one interesting note that you just brought to mind when you said that – there are some patients who got COVID and they ended up with pulmonary fibrosis. Which is just, you know—

[00:17:27] Lynch-Reichert: That's devastating, I can imagine.

[00:17:29] Lindell: Yes, and so what we did with this book is it's several iterations in, and one thing that I wanted to make sure to say is, in addition to all those other stakeholders who had a part in developing the book, we also had a curriculum expert at the University of Pittsburgh when at the very end when we thought it was ready to go, she read it and she went through it with a red pen, and she made it even better. And so last summer, one of my career development goals as part of my grant was to advance this to other advanced lung disease, so we now have a version for advanced COPD, and as you mentioned, I am now working with Dr. Kelechi and Dr. Diana Lang, who received grant funding to adapt it to dementia.

[00:18:23] Lynch-Reichert: So Dr. Lindell, it is interesting to me that a PhD in Nursing was the medical professional who came up with the SUPPORT program, not a physician. Thoughts on that?

[00:18:34] Lindell: Thank you! So as I mentioned, I am a pulmonary clinical nurse specialist, and by nature of my role, I spend a lot of time with patients. And back in the day when I was a critical care nurse, we knew that nurses spend the most time at the bedside. And physicians have multiple patients come and go, and that actually continued in my career and when I worked in an outpatient. The nurses spend so much time on the phone talking with the patients, and nurses in the United States according to the Gallup Poll, and I want to say it's like 19 years in a row, are the most trusted health profession.

[00:19:27] Lynch-Reichert: Mhm, they are.

[00:19:29] Lindell: And I like to say I speak people, I speak their language. You have a range of patients that come from all walks of life and that is one of the things that we're taught in school is that, you know, you judge no one and you take care of everyone.

[00:19:51] Lynch-Reichert: Right.

[00:19:52] Lindell: So to me, I was an extension as a voice to see what they needed, and I knew that in order for me to be able to do that research to help these patients, I had to get a PhD to be a PI on a study. And so how I got there was because of my clinical background, but I was very passionate and I am still very passionate that we take the best care of patients to reduce suffering. And that's a big component of palliative care. Today, it's actually just so reassuring to see, there’s a much bigger focus on interprofessional and team science. And so I look at it as we all work together, and since I've come here, I’m working with Dr. Tim Whelan in the Advanced Lung Disease program and the other pulmonologist, and I think that it's so important, that we only get further ahead when we work together.

[00:20:57] Lynch-Reichert: And on top of that, just to remind our audience as I do every podcast, the beauty of it is you are working in an academic health center where those natural affinities with your colleagues in other disciplines just comes to the fore and offers you the kind of resources you need to be able to do exactly what you're suggesting you want to do is take care of that patient. And I'm very proud that MUSC is also, as one of its stated mission goals, is to be very patient-centered, and I would imagine the SUPPORT program, again, would be a good guidepost for both health professional students and faculty to be able to meet that goal. What have been the major milestone benefits of the SUPPORT program and how do you see it being utilized in healthcare going forward?

[00:21:53] Lindell: We can now say it's an evidence-based intervention. We know that it improves knowledge for caregivers and patients and that it also helps the caregiver feel more comfortable in their role. Another area of research that I'm looking at is the impact of disease on the caregivers, especially with these serious illnesses, and what we find is, I'll give the example, in pulmonary fibrosis, median age for a patient with pulmonary fibrosis is 65.And most often, their spouse is a similar age, and so what we find happens is that the spouse may or may not but more frequently has their own morbidities to deal with, comorbidities, and so in addition to taking care of themselves, they now have to take care of this patient who has pulmonary fibrosis. And as the disease advances, the patient's functional status, their ability to do things really decreases, but then they also go on increasing doses of supplemental oxygen. So the caregiver, we've done focus groups with patients, caregivers, and caregivers of patients who’ve died of pulmonary fibrosis, and what the caregivers--just the impact of caring for their loved one.

I have this story, there was a woman in her early 60s,she was the breadwinner for the family, her husband had pulmonary fibrosis, and he coughed so much, he coughed at night, and she reported that when she went to work, she’d be sleepy and her coworkers would ask her, “What’s going on? Are you okay? “And she said, "Oh, my goodness, I am so tired! “She said, "He coughs all night, but I don't want to hurt his feelings and leave the bedroom, so I stay there, and then I don't get a full night's sleep, but yet I come to work and I'm sleepy, but I have to maintain our job because maintaining our job maintains the insurance."

[00:24:13] Lynch-Reichert: Right.

[00:24:14] Lindell: So that's just one story of the impact on caregivers. There’s so many unmet needs for caregivers that we're really looking at how to see what can we do to help our caregivers of our patients with this disease.

[00:24:33] Lynch-Reichert: Absolutely, and again, I think COVID has brought that to the fore of all the people that have to take care of their loved ones in isolation until very recently, and then again, we’re looking at strains that might, once more, make it very important for us to have telehealth. Again, I think the SUPPORT program would be vital to assisting with that. Can you tell me some of the lessons you've learned from being a part of patients' lives and their families' lives at such an intense and delicate phase of life?

[00:25:11] Lindell: So I feel very passionate that this is a calling and that this is a gift for me to be able to do this work. And what these patients have taught me is maybe something that I might consider... I actually look at things differently now. I think, is it really that important? Does whatever really matter as much? And to really enjoy and focus on the important things. And so in that nature, what's important to one person may differ from somebody else, but it really-- you do have to live life. You know, these patients, it's so interesting is that I used to always describe them as they knew something was getting worse, they just attribute it to aging, so they think that one day I'm okay and then the next day they get this terrible diagnosis. And it just really puts life in perspective. So it's really important, do good things for others, take good care of yourself, wisely do what you want to do.

[00:26:35] Lynch-Reichert: Right, words to live by, absolutely. I just want to say, it's been a pleasure speaking with you today and learning about this incredible SUPPORT program you've

developed and is available hopefully very soon for all of us to utilize. It’s again another example of the great research in clinical care that distinguishes MUSC from other health centers. And you in particular, as a human being who saw a need, had the compassion, had the wisdom, and the diligence to move forward to develop something of this nature for your patients, caregivers, and health professionals. I applaud you and congratulate you and thank you for making a difference in the lives of those we serve, Dr. Lindell.

Thank you so very much for being a part of Science Never Sleeps.

[00:27:23] Lindell: Thank you.

[00:27:25] Lynch-Reichert: Enjoyed it. And to our listeners, many thanks again for your interest and support as we all work to change what's possible through research at MUSC.