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Leah J. Witt, MD: Hello. I'm Dr Leah Witt. Welcome back to season one of the Medscape InDiscussion chronic obstructive pulmonary disease (COPD) podcast series. Today, we're talking about palliative care and symptom management and COPD, and I'm delighted to welcome today's expert guest, Dr Anand Iyer. Dr Iyer is a pulmonary critical care physician scientist and associate professor in the Division of Pulmonary, Allergy, and Critical Care Medicine; the Division of Gerontology, Geriatrics, and Palliative Care; and the School of Nursing at the University of Alabama at Birmingham (UAB).
He's also a physician investigator in the Geriatrics Research Education and Clinical Center at the Birmingham Veterans Affairs Medical Center and is UAB's first recipient of a Beeson Award, supported by a Paul B. Beeson Emerging Leaders Career Development Award in Aging from the National Institute on Aging.
His research and advocacy focuses on developing innovative solutions to help patients and their families living with serious respiratory illnesses to improve their well-being and maintain independence in their communities. He's also a wonderful person and a dear friend. Welcome to the Medscape InDiscussion podcast, Anand.
Anand S. Iyer, MD, MSPH: Thank you for having me, Leah. It's an honor, and it's going to be fun.
Witt: We like to start these episodes by talking about what's on your mind outside of medicine. Maybe you have a hobby or a book you're reading. For me, it's usually Netflix. What's on your mind?
Iyer: Right now, I am slightly nervous to make sure that my daughter's doing well in her fiddle competition. Not to push the Alabama stereotype, but my half-Indian daughter has picked up the fiddle in addition to classical violin. Since I can play guitar and piano, I'm usually her accompanist. Next week, she's doing her spring recital, and I have a piano piece to play with her and a guitar accompaniment to make sure that I have ironed out in a week, so I have to work on those things. It's super fun and a high priority for me. I love it.
Witt: Such a fun father-daughter thing to do.
Iyer: We stand out in the crowd, that's for sure.
Witt: As usual, what's on my mind is much less cultured. I've been binging The Last Dance, a documentary on Netflix.
Let's start talking COPD. Today, we're going to keep talking about Mr Rivera, a case we've been following all season. He's a 78-year-old man with COPD, and we're talking to you about palliative care and symptom management. He has group E COPD. He really has a lot of symptoms and frequent exacerbations.
In the past year, he's progressed quite a bit and has been hospitalized four times, including two intensive care unit (ICU) stays, and he's had to use bilevel positive airway pressure (BiPAP). His FEV1 has dropped quite a bit; it's now 0.6 L. He comes to clinic to see you today with severe shortness of breath and cough, but he's also mentioning that he's feeling really depressed and lonely, and he hasn't been able to do his usual social activities. He hasn't been getting together to play cards with his friends.
I wanted to start by asking you how you approach a patient like this, with high symptoms and exacerbations, in your palliative approach.
Iyer: The way you described him, I'm thinking, Oh, I wish I met him a year ago. I'm thinking about the things we could have done to help him improve his well-being, his function, his independence. Thinking of things holistically and comprehensively could have made a huge difference. I think with his trajectory and overall well-being, a lot of people will put him into this bucket of end-stage COPD. They would say, Oh, there's not much I can do. Thinking of things with a palliative approach gives me the ability to say, what else can we do? There are so many things. I immediately start thinking about treatable things that are in that list of symptoms you described, and I put them into categories. I taught my residents this on Tuesday. What are the symptoms most worrisome to him? And what can we do for both pulmonary and nonpulmonary symptoms? We can pick apart any one of those symptoms, but I imagine he's super breathless, if you want to talk about that one to start.
Witt: Let's talk about breathlessness, especially beyond inhalers and the adjunctive medications that we've talked about before. We can talk about that too — azithromycin, roflumilast, for example — but what are you thinking with his breathlessness?
Iyer: I think breathlessness is one of the most distressing symptoms. If you put that on par with lung cancer or heart failure, for example, people with COPD who experience refractory breathlessness describe it as a horrific experience. They describe it as drowning, and it causes them to not go back in their communities They can maybe even be breathless walking across the room to the bathroom.
I want to understand how bad this is for him. What are its triggers, and what does he do when it happens to try to bring that breathlessness down? Let's make sure absolutely everything is optimized. Let's make sure he knows his inhalers. He might have nebulizers available. He might have a BiPAP at home.
Then there are pulmonary things to address. Have we ironed out all of those? Does he have comorbid heart failure or heart disease or pulmonary hypertension or something? That's 101-level care for patients with COPD. Let's get all that checked out, and then we start palliative-level care. We will start to think about measuring the breath assist more accurately using symptom measures. Does he have action plans? Does he know how to do pursed-lip breathing and diaphragmatic breathing? How well does he remember his exercises from pulmonary rehab? Has he still practiced those things? What kind of home exercises can he get? And then can I get him, in conjunction with my palliative care clinicians, on possibly some low-dose opioids for a desperate refractory breathlessness in a safe manner that both of us feel comfortable about? That's how I would start right there and see how he does.
Witt: You mentioned an action plan, and I think I know what you're talking about: the American Thoracic Society (ATS) sudden breathlessness crisis information. Is that what you're referring to?
Iyer: Something like that.
Witt: What does an action plan look like?
Iyer: They are variable, but there are some from ATS; the COPD Foundation has some. These are crisis action plans that say, in the event that you're having acute breathlessness, what are some ways that you can bring this down?
For example, imagine a quiet place, think about the beach, sit down, use pursed-lip breathing, and engage your diaphragm. Then, as a last resort, reach for your inhaler, and then your nebulizer, and if things aren't still improving, then you call. Pointing something like that out in clinic and walking through those steps, which I just did on Tuesday in my clinic with somebody, it was remarkable how they had no idea about any of the steps to take. These are possibly the triggers that are bringing him in for these frequent exacerbations.
Having an action plan could be one way to reduce those. We could add having low-dose opioids available if he needed them in those events to safely treat that severe shortness of breath.
Witt: You started to talk about low-dose opioids. When do you think about opioids with severe breathlessness? And do you have any general framework for where you start or how you think about approaching this?
Iyer: From what I've learned from my palliative care colleagues, and the way the system is set up, a lot of pulmonologists are afraid to start them. The research isn't exactly solid. I'll lay it out there: Safety exists. In people with COPD, you're worried about respiratory depression or hypercapnia. Most people don't want that to happen and have it cause worsening hypercapnia. That is a huge barrier. I often will let my palliative care colleagues know that I'm okay with this. This person is referred to you. Let's work together and find a safe medium, and then I can take back over once you have started and titrated.
Oftentimes it's something low, like morphine that's low-dose and long-acting that will last a lot longer. They figure out a dose that's safe and helps the patient feel better. This has happened at least five times in the past year for me. Patients have expressed immense benefit from having this available to them in these very severe airflow obstruction scenarios. This is in a population with refractory breathlessness. It is team-based and safe, and everybody feels better about it, including the patient and their families. That's just one way to look at it.
Witt: It sounds like you're thinking about a referral to palliative care if that's available where you are, but maybe earlier in the disease course. When do you think about referring, and how do you talk to a patient about that referral?
Iyer: This is the thing we've tried to push. We recently released an ATS policy statement that talks about palliative care early in the continuum. I think the best thing to let the audience of this podcast know about is that all hospice is palliative care, but not all palliative care is hospice.
Witt: Oh, I love that.
Iyer: People have learned about palliative care because it was born of the hospice movement. Therefore, yes, that's true. It is a benefit for the last 6 months of life, when someone's nearing end-of-life care, as they progress toward death. That's hospice. Unfortunately, that has extended and caused people to think that I'm trying to make everybody go toward hospice when in fact, I'm not. If you look at it, palliative care is a comprehensive discipline for emotional and physical symptom support and caregiver support across the continuum to relieve suffering in a patient with serious illness. None of that says "because they're dying and they're in the last 3 weeks of life." Unfortunately, all we usually do as pulmonologists is refer to palliative care in the ICU, when patients are on a ventilator and we need help getting them off it, or they only have 3 months to live and we need to get them to hospice.
I would love to start the discussion a year in advance. This gentleman would have been somebody I would have already referred to palliative care a year ago because he met so many criteria that we set aside in that ATS policy statement. We use something called the "levers model." There are domains like lung function, breathlessness, oxygen, exacerbations, comorbid needs, caregiver needs, etc. Each one of those rises to a certain threshold where you need to start engaging a palliative care approach by yourself as a clinician, as a pulmonary person or primary care doctor. Or it's really high, and there's severe breathlessness.
I would go ahead and get palliative care on board as a team, as a specialty referral or secondary palliative care. I would have started an approach in my own clinic that would have looked at all these things last year, measured the symptoms, started the education, began the early discussions about what this thing could look like in the next year or two, and then slowly started to feed in. With this approach, there's a team that can help me help you with symptom management. Let's start getting them involved. I think that's important.
Witt: I think what you said is right. A lot of people understand palliative care as it relates to hospice. I feel like I have a challenge when I talk to patients because they think I'm saying something that I'm not, which is that they're at the end of their life. Do you have a way that you describe it to patients?
Iyer: Our case study patient, Mr Rivera, is 78. But the last three people that I've referred to palliative care have been younger people. So you think, wait, what? You're referring those people to palliative care?
Absolutely. Because their anxiety is quite high. Their symptom burden is quite high. And because of the way I've engaged that team early, all of us are happier. The patient's happier. Her well-being is so much better. She's been to the hospital once in the past year because of all these things.
I describe it as a team of clinicians from multiple disciplines, both physicians and nurse practitioners who have many resources at their disposal available to help you feel better and improve your well-being. That's it. I don't even say that the H word (hospice) in this discussion, I'm getting them here for these three things.
If, as a patient, your anxiety is too hard for me to manage, I don't know what to do as a pulmonologist. Your breathlessness is at the limit of what I can do. I need the palliative care team to help me start some sort of regimen of low-dose opioids and adjacent medications that will help us all feel safe. And then the entire team is engaged in collaborative care, conversations about goals of care, and advanced care planning. To the patient, I say, This is just a team and they're called "palliative." It means "to cloak," as in a serious illness. They're just going to help us, help me, help you. It takes a couple of visits, but then they're like, Oh, this is awesome.
Witt: I love that. Our case study patient has been to the hospital four times, and this might be also a good time to talk about what the future looks like. For example, What would you want if you get readmitted? How are you talking to patients about advanced care planning, expected management, things like that?
Iyer: That's a great question. People may not realize that each exacerbation is like a sentinel event in COPD, especially if it's severe. Not only is his functional status declining after that and not coming back, but his well-being is also going down, his risk for future exacerbations is going up, his mortality [risk] is through the roof. One in four patients in this situation may die that year. One in two might die in 4 or 5 years. So that just by itself, now that he's at four exacerbations, the survival rate is very low.
Witt: One of our previous guests called an exacerbation a "lung attack," like a heart attack, which I thought was a great way to describe it.
Iyer: Yes, that's great. The patients take major hits in both lung function and well-being. This patient has had four; that already portends low survival. I would calculate a BODE score: body mass index (BMI), obstruction, dyspnea, and exercise capacity. I would put that in the calculator, and I'd get some points for the fact that he probably can't walk very far. His breathlessness is really high, but it's like a 4 on the modified Medical Research Council (mMRC) scale. He probably has terrible airflow obstruction. That's also a high input for the score. I don't know if he's cachectic and frail, but he might have a really low BMI as well. All of which says, his mortality risk is high. His [chance of] survival could be like 18% or 15%.
Witt: In 3 years.
Iyer: In the next 3 years or so. That's a BODE score of 7-10, and it's 3 years. What ways can I nudge that BODE score to be a little bit lower for him so that I can extend his survival?
I can maybe get him to palliative care to improve nutrition counseling so that his cachexia is a little bit better and he puts on a little bit more muscle mass. He's in pulmonary rehab again, so that's 1 point better. I've improved his refractory breathlessness. He can walk further, and his exercise capacity is better. That's 2 or 3 points better there. His breathlessness is down. That's another couple of points.
I started trying to try to tackle some of those points on the BODE scale. Already I've gone to the next level category in BODE, which is in the 50% range. We've gone from a survival of 18% to survival of 50% by decreasing those categories and shifting those by 1 or 2 points each. I think of ways that we could tackle each one of those using a palliative approach or even using the team from palliative care to help me do that. I've already made a tremendous improvement in his BODE score. It's tough because there's so many people who we see, you and I in clinic, that have been in so-called end-stage COPD, living with an FEV1 of 20 for 10 years. I don't know what to do. That's a lot of people.
Witt: That was going to be my next question, because I think this conversation about prognostication is so important and a lot of people want to hear from me. They say, my friend has cancer. They told them they have this much time left. They ask, so how much time do I have left? And our prognostic scores, that BODE score, is 3 years, which is a hard one to wrap your mind around.
When we're saying we can refer to hospice when the prognosis is less than 6 months, we don't have a great 6-month prognosis calculator for COPD, and people can live for years and years with terrible lung function. How do you talk about prognosis and decide when to refer to hospice?
Iyer: It's planting the seed; it's layered in earlier conversations that evolve as the disease progresses. If I had seen Mr Rivera last year, I would have said, Look, I don't know what the future holds. I put some numbers in, and it's not looking great for the next 3 to 4 years. But as he got exacerbated, he came back to me for another big clinic visit. I said, well, that's another one that's taking a big hit on you. We would have had this conversation change and evolve over time. That's the first thing. It doesn't have to be set in stone. He'd meet a lot of criteria to go to hospice, and it's okay to come back out of hospice.
In hospice, he gets a lot of home benefits and a lot of home health in the house. The resources from the hospice benefit can provide for his home living situation. Maybe his quality of life is better. I've had some patients, at least a couple in the past couple of years, come back out and say, I'm better. I've gone to rehab and exercised; I've done my things and now I'm getting better. Prognosis is murky in COPD. It's not as clear-cut as in patients with, for example, idiopathic pulmonary fibrosis (IPF) or lung cancer, who have more defined trajectories.
I will say that with medications, IPF is now looking a little bit more like COPD, but it's not such a precipitous decline. COPD is a chronic, slow decline over time. That makes it hard, I think. It's telling patients you don't know and you're okay with not knowing. But there are things that appear in this stage — exacerbations, shortness of breath, those kinds of things.
Witt: I think because the prognosis isn't as straightforward as in things like lung cancer or IPF, that's why these patients don't get referred. They're definitely underreferred to palliative care and hospice. That's why it's at the front of your mind. I like that a lot. That is why having a long-term relationship is so important. Every visit is another conversation about where you are and what progress has been made in either direction.
Iyer: Correct. And some factors will jump out, like cachexia, a super-frail person, a high exacerbation, or refractory breathlessness. Those are the domains I'm talking about that raise red flags to me that something's not going to go well in the next year or two. It's just that simple. It's not, you're going to get an exacerbation. It's just going to be tough. Here's some things you might experience. You may not be able to get to the mailbox in 6 months. We're going to try to help you through that, but just keep that in mind. They don't know things like that; they don't know because there's not that honesty up front.
From our experience, yours and mine, we've seen that happen. That poor functional status just keeps getting worse. They need to know what that might be like so they're not afraid, but we can put in to play some things to help them avoid that.
Witt: I wanted to spend the last few minutes talking about the social symptoms Mr Rivera mentioned and mood symptoms. He mentioned he's feeling depressed, he's lonely, he's not able to do his social activities. Until some of the important research that you and your colleagues have done, this didn't maybe rise to the minds of pulmonologists as something that is in their domain. Tell us a little bit about the work and research you've done about social symptoms and COPD.
Iyer: We've been working in the space of emotional symptoms and COPD for some time, looking at frequency of anxiety and depression in COPD. As high as 1 in 3 patients. The numbers are quite variable just by the way you measure them, but at least one third of patients with COPD have anxiety and depression.
It could possibly be much higher. Of those who have anxiety and depression, about half don't even have any medication or therapy for their anxiety and depression. It's oftentimes chalked up to COPD itself rather than a functional emotional condition that needs its own treatment. And it's usually Black men who go untreated.
There's some stoicism there that also we found in recent papers. And then, as your GOLD letter groupings get higher, your anxiety and depression symptoms go up and your untreated anxiety and depression go up. That predicts future exacerbations independently. That's the anxiety and depression.
It's a big beast of a challenge by itself. I'll give a shout out to Angela Suen from UCSF. We all did work together on the prevalence of social isolation and loneliness among people living with COPD in a large cohort. I think it's 1 in 6 have social isolation and 1 in 5 experience loneliness. What's frightening is that once they start using oxygen, loneliness doubles. Oftentimes, people using oxygen have twice the social isolation and loneliness as those who are in the general older adult population. We hear this all the time; that tank is too heavy for me, I can't move it around. Now all of a sudden, what's supposed to help them is now a barrier to getting out of the house, and they can't move and they can't go anywhere. You're thinking about trying to tote a big tank and a walker and get out and go to church. That's not that easy to do, and yet we're trying to get it because it's a mortality benefit in a certain subset in COPD for getting on oxygen and severe hypoxemia. But now it's trapped them and increased their risk for social isolation and loneliness. To me, that is a big important trade-off that we need to have as a culture and as a medical community: Are we doing the right thing, and why don't we have more portable options? That's a whole other discussion.
Witt: I agree with you. We could do a whole episode on this, and I appreciate the work you're doing to bring these social and mood symptoms into the domain of pulmonologists, because they affect how people take care of themselves and ultimately their disease trajectory.
As we wrap up, what few key points do you want to make sure that the listeners leave this episode with?
Iyer: The statement I made earlier, that all hospice is palliative care but not all palliative care is hospice. Just think about this. Discuss this integration early. Pulmonary clinicians and primary care can start thinking comprehensively about a disease or chronic disease on their own.
That's primary palliative care. But don't hesitate to reach out to your colleagues at your institutions to start the referral process early for whatever it might be: anxiety, breathlessness, depression, social isolation, caregiver needs, whatever. As long as we start doing this proactively, I think their well-being can improve and their independence can improve. I've seen that firsthand from my patients.
Witt: Thank you so much for joining us. Today we've talked to Dr Anand Iyer about palliative care. This was an amazing episode, and we could do three more on the same topic. Thank you so much for joining us. Please take a moment to download the Medscape app to listen and subscribe to this podcast series on COPD. This is Dr Leah Witt, for the Medscape InDiscussion chronic obstructive pulmonary disease podcast.
Resources
Chronic Obstructive Pulmonary Disease (COPD)
Global Initiative for Chronic Obstructive Lung Disease 2023 Report: GOLD Executive Summary
Considerations for and Mechanisms of Adjunct Therapy in COPD
Use of Short-Acting Opioids in the Management of Breathlessness: An Evidence-Based Review
ATS Sudden Breathlessness Crisis
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Cite this: Practicing Proactive Palliative Care in COPD Management - Medscape - Jul 25, 2024.
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