Episode Transcript
[00:00:05] Speaker A: And the pursing of the lips results in what we call higher positive expiratory pressure in the lungs, meaning something about pursing those lips together makes the exhale more effective at clearing the CO2 out of the lungs. The American Lung association has a really nice pursed lip coaching video on YouTube, and a couple of my patients have told me that if they're starting to feel breathless, they kind of whip out their phone and play this video just to sort of cue them about the pursed lip.
[00:00:47] Speaker B: Hi everyone, this is Dr. Megan Byer with Find Empathy. I'm thrilled to introduce Dr. Megan Hosey, a rehabilitation psychologist and assistant professor at the Johns Hopkins School of Medicine in the Department of Physical medicine and rehabilitation.
Dr. Hosey's clinical and research work focuses on psychological adaptation after critical illness, ICU survivorship, and the mind body factors that shape symptoms like breathlessness and fatigue.
Dr. Hosey has been featured in many articles and news outlets, so we're lucky to have her. If you search for her, you'll find that she is a strong advocate that shares research on topics like long Covid ICU delirium and post ICU mental health topics that aren't covered nearly enough.
She is able to translate complex pulmonary symptoms into practical strategies patients and families can use every day, and she's going to teach us this as well.
Today she'll walk us through how to assess and manage breathlessness, from understanding the anxiety dyspenia loop to to skills like pursed lip breathing, pacing, values based activity planning and team based care.
So please enjoy this talk by Dr. Megan Hosey.
[00:02:04] Speaker C: Great.
[00:02:05] Speaker A: It is so nice to see everybody on a Friday afternoon.
Before I get started, I thought I would start with a couple of questions.
The first one is how many folks with us today wind up working with people who experience breathlessness or have breathlessness as a functionally limiting symptom?
Okay, so folks,
[00:02:34] Speaker B: take one minute and write down any patients you've worked with that have experienced issues with breathlessness. Keep these patients in mind as you listen to this presentation.
[00:02:46] Speaker A: The Hope for today Here's a bit of an overview.
I thought we would talk about pulmonary conditions that we often see in our medical intensive care unit at Hopkins, but you also might see in the community.
We thought we would characterize breathlessness, talk about the different ways that people conceptualize it, go through a patient experience, make sure we talk about multidisciplinary collaboration and the importance of having a multidisciplinary team when a patient's coping with breathlessness assessment interventions, and then do some discussion questions and resource sharing at the end.
Before I start, are there other things people were hoping I was going to touch on today, or are there specific topics people are really hoping to learn?
Regards to breathlessness, it's okay if the answer is no, but want to make sure that we touch on things that are relevant to people.
[00:03:52] Speaker C: So one thing that I was hoping that you might cover, which I'm. I'm guessing you probably will, is in grad school, we worked with. I worked with a professor who had.
His research was in asthma, and he talked about sort of the overlap of anxiety and asthma and how sometimes it's hard for people to know when they're having an asthma attack versus, you know, just having anxiety. And so sort of trying to parcel out some of those symptoms that might be overlapping or misunderstood would be really helpful.
[00:04:28] Speaker A: Got it.
Anything else people are hoping that we touch on today?
[00:04:34] Speaker B: Cool.
[00:04:34] Speaker A: Well, good news is we can have folks ask questions or jump in at any time.
I'm going to start by talking about some of the pulmonary conditions that you might encounter, either in hospital or community settings.
One of the most common diagnosis is copd, or Chronic Obstructive Pulmonary Disorder. COPD is actually not one thing. It's a collection of diseases that cause lung problems or restricted airflow.
So within this umbrella are things like emphysema, chronic bronchitis.
It's again, one of the more common lung disorders. With 16 million people in the United States with the diagnosis, notably, it's becoming more common in women than men.
We are seeing it happen more in older adults.
People who are at risk are often former smokers or people who've had a history of asthma. Asthma. And you can see several other socioeconomic disparities that seem to impact people with copd. So, for example, American Indians and Alaska Natives and multiracial non Hispanics more at risk.
People who live in urban environments tend to be more at risk. However, people who live in rural settings with COPD tend to have less access to care.
And so these are some of the things that we think about when we're first meeting folks with copd.
Another one that we commonly see in the ICU after people may have lived in the community with this disorder for a little bit, is interstitial lung disease.
This one's a bit more rare.
It's typically caused by a scarring or a scar pattern on the lungs.
It most commonly is idiopathic, meaning we don't know exactly, exactly what caused it. It just a person may, out of the blue, show up one day with persistent breathlessness or cardiopulmonary symptoms and then go on to be diagnosed with this.
People who we know are at risk or who are not idiopathic are people who have asbestosis, which is being exposed to asbestos, often through a work environment or in your living situation.
Hypersensitivity pneumonitis, which is an autoimmune response to allergens, sarcoidosis, which is also an autoimmune disorder, and rheumatoid arthritis can be highly predictive of people who are going to live with ild.
It is highly progressive and it can be seen at any age. So there are lots of children every year who are diagnosed with ild.
So cystic fibrosis, again, a kind of rarer disorder. But I bring it up because this is a childhood discovered disorder that used to mean automatic death in childhood. We would give people a life limiting diagnosis of like 17 years. And now, thanks to lung transplants, advancing treatments, we're seeing people live into their 40s and 50s, which was not what they expected and is good news. And so this does affect adults at this stage.
For folks who are new to cf, it is a genetic condition.
It requires both parents to have a mutation in a specific gene that affects the CFTR protein. And what it means is people don't develop cilia in a way that the lungs are able to clear mucus. So over time, mucus collects, it scars the lungs and it makes it more difficult to breathe.
So knowing there are many other pulmonary conditions that can affect breathlessness. So for example, people with cancer that affects their lungs, people with congestive heart failure also have comorbid pulmonary flooding that can reduce breathlessness. And so it's a fun or not fun? My God, it's like an important symptom to assess in a lot of people.
So in terms of characterizing breathlessness, it is a subjective experience of breathing discomfort comprised of qualitatively distinct sensations that vary in intensity. So that's like your uber broad definition from the American Thoracic Society.
And so when we try to go in and break down what that means, we know that respiratory drive arises from the brain and heads into the periphery, from the lung and chest wall receptors into a central peripheral chemoreceptors and creates a drive for ventilation. So this is all of the biomechanical drive which also interacts with a perception of breathlessness. So we know, as Megan was mentioning earlier, the natural and built in response to not breathing well is fear or anxiety. So you might have a self perpetuating system that we're going to talk a little bit more about in a moment. Interestingly, breathlessness can be thought about a little bit like we think about chronic pain. So people can have an acute flare or acute exacerbation.
What that suggests is a rapid decrease in lung function function and might necessitate medications like bronchodilators or steroids.
People may even experience acute respiratory distress syndrome, which requires mechanical ventilation or machines that breathe for you.
When we're thinking about people having an acute flare or exacerbation, we're not necessarily thinking about more chronic strategies. You're thinking about distraction, grounding for panic and cues for slowing.
So for people who have chronic breathlessness, on the other hand, this is breathlessness that's persistent just throughout the person's day within their usual functioning.
You might see people requiring supplemental oxygen and taking preventive or maintenance medications over time thinking about things like Symbicort or again, these bronchodilators that are meant to proactively keep the lungs open.
And here is where we'll talk a little bit in more depth later. But we can talk here about things like fatigue management, anxiety management, social support to build in the changes in life that come with more chronic changes in breathlessness.
So just sort of thinking about patient experiences. I thought I would pause my talking here and share a brief video that comes out of the Cambridge Breathlessness Intervention center, and we could just hear some patients talk about the process of being diagnosed and living with pulmonary conditions.
In the late forties and early fifties.
[00:12:42] Speaker D: Reg was.
[00:12:43] Speaker A: Reg was starting to have difficulties in coping really with various things and getting attacks, sudden attacks of breathlessness.
And it's not nice at all when you can't breathe. Nothing else matters. As we all know, the reason I
[00:12:59] Speaker E: was diagnosed was basically I was playing softball with my wife and two children. We all play on the same team and I found that I couldn't run from one base to another without stopping. Actually, on a couple of occasions the game was stopped due to my lack of breath.
I then went and visited the local doctor and was referred and was found that I had emphysema. That was about three years ago, just before my 50th birthday.
[00:13:28] Speaker D: I was diagnosed 14 years ago and at that time it was.
I was told that it would probably be about a 5 year life cycle.
[00:13:41] Speaker F: I was running two work in the mornings and it's about 8.5ks and progressively over a couple of weeks I went from being able to run a couple of Ks at a go because I'm not a Great runner. To not even being able to run 200 metres. And it was really, it was confronting. And I'm like, obviously, I'm just lazier than I thought. It's cold. And I kept getting a lot of little mini infections and I'd be at the doctors and go, you know, what's wrong? I can't breathe. I feel like somebody's sitting, physically pushing on my chest and I can't get any air. Feels like the air's stopping at the top of my lungs.
I've got these little infections. And this went on and on and on for through late July, August and September.
And then in the October, I went to a different doctor who then decided to test for a lung disease versus everything else.
[00:14:36] Speaker G: We did the lung function test and the whole gamut and.
Which was useful to find out, you
[00:14:47] Speaker A: know, what was this?
[00:14:49] Speaker G: And I was given the diagnosis of chronic obstructive pulmonary disease.
[00:14:55] Speaker F: I was very confused and a little, isn't this an old person's disease? Does this mean I'm going to stop breathing? Does this mean I'm going to end up like people you see that just die because their airways seal up? I wasn't sure what it was and it was a little confronting and it was quite frightening.
[00:15:14] Speaker D: I asked what it was and I think I remember thinking, the reality is, you've smoked for all those years, you're going to pay the consequences for that.
[00:15:24] Speaker E: My reaction to the diagnosis, honestly, was, what do you expect?
You know, shit. But what did you expect? You've been smoking since you were 11, you're hooting down 30 odd a day or 10,000 a year. When I worked it out, what did you expect?
[00:15:43] Speaker D: The symptoms were, I couldn't breathe and I was. And it's extremely fearful if you don't know what that is and all of a sudden you can't breathe. It's a very unpleasant and quite terrifying experience. And I was actually in the middle of town in Calcutta, where we were going over a bridge and I was with a lot of other work people, a lot of engineers with a lot of men. We were looking at things and I got that I couldn't breathe at all. And they ran down and got the car to come up and take me back to the hotel and a doctor came and a doctor said, asthma, and gave me the appropriate medication for asthma. But I knew when I got back to Australia that it wasn't just asthma, it certainly was asthma, but it was actually the copd and you cannot, when it's that bad, you actually gasping for Air.
[00:16:43] Speaker H: When I was starting to get on a bit, I was starting to find it very difficult to climb up a ladder and carry a piece of timber up there and cut it or whatever.
And it was starting to become frustrating. I was slowing down. So I asked my doctor.
He said a lot. Don't worry about it. Just old age.
It's coming. I said, oh, right.
Persevered a bit longer.
And then I happened to go to the doctors another day and it was a young lady doctor. Oh, never have a young lady doctor before.
And she asked me how I felt and I told her, and she said, I'm going to send you to the hospital and get some tests done.
So she did. I went and I had this injection put in the arm and I had to get on the treadmill and then the bike and so forth, and then go through an mri.
And then the surgeon said, it's time for you to retire.
You have emphysema. Oh, shock horror.
How long have I got?
How many cigarettes do you smoke a day?
25, 30, whatever.
Well, he said, keep working, keep smoking.
Give you four years.
Best kick in the butt I ever had.
[00:18:26] Speaker E: Looking at the X rays in my lungs showed me that what had been done wasn't reversible. And I had to then choose what I was going to do about it.
[00:18:39] Speaker A: So before I move on, I thought I would just pause there and see what folks thought about potential intervention points or things they might be assessing just based on what they've heard from these patients experiences.
[00:18:57] Speaker B: Pause the video or audio. Think about your own practice. What assessments have you made about the patients in the video shown by Dr. Hosey?
Where are the potential intervention points?
[00:19:12] Speaker A: I'd want to assess their sleep and also I'd want to refer them for an oxygen level to make sure that they're getting adequate oxygen during the day and at night as well.
Yeah, I think that those are really good thoughts. So they'll come up on our list later.
And you can hear folks with a lot of shock and fear.
And I also hear, because people commonly associate copd, we're talking about in that example, with smoking, there was some guilt and shame, I think, about potential causes for copd.
So we'll kind of touch base about some of those things later.
So in thinking about multidisciplinary collaboration, we think about teams that get put together for patients in areas where they have access to it.
So pulmonary rehab is a common and important prescription for people with chronic lung disorders.
As I mentioned earlier, it might even be a transplant teeth name that gets added to your patient's docket if it's decided that they're eligible for a lung transplant, for example, for interstitial lung disease or similar things, the pulmonologist will do some of the tests that Sarah was mentioning. So pulmonary function testing, teaching about pulse oximetry monitoring so the patient can sort of.
People might have become accustomed during COVID for the little pulse oximeters you can wear on your finger and that help you measure your blood oxygenation from home.
They give patients a general guideline of something like over 88% and you're probably functioning okay. You drop lower than that, and that's when we're going to think about heading to a physician's office or to an urgent care.
And then many of the other tests that you heard the patients mentioned as well.
Bronchoscopy is the process of putting a camera down the esophagus and into the lungs to look at the magnitude of scarring that might come along with a lung biopsy that happens at the same time.
X rays, MRIs, all really common for these folks.
And finally, in thinking about family integration, this can often be a really big shock to families. It can involve new levels of caregiving, especially as breathlessness and pulmonary function might reduce people's ability to get around. You heard one mentioned, one man mention that it was recommended that he retire on the spot.
So these can all have really big implications for family.
I see Megan's hand. Go right ahead, Megan.
[00:22:14] Speaker C: I just want to jump in with a few comments from the chat, if that's okay.
[00:22:17] Speaker A: Sure. Please.
[00:22:19] Speaker C: So Courtney had mentioned that when you were asking, what else would you assess for?
She said smoking history, rate of speech, adjustment to the initial feedback and blame.
And then we also got sleep apnea as something to assess for.
And then Janelle asked, can you not work with emphysema? It seems like this would only be in severe cases. Are there workplace accommodations that can occur?
And Courtney said she's having microphone issues, so that's why she's in the chat. Thanks, Courtney.
[00:22:55] Speaker A: That's a good question. Courtney, I think that this is like a really good opportunity to talk about those social models of disability or ICF models of disability, where, depending on the type of work and the availability of accommodation, we would hope that people could keep up at their vocation if they wanted to. I think that gentleman in particular mentioned that he had been in construction and on ladders.
I think, you know, depending on workplace flexibility, the degree of physicality of jobs might wind up playing a role in that. But you're right. I think like an on the spot, you can't work anymore. It's pretty heavy handed, but I think it can be sort of like a person by workplace environment type interaction there.
And I think those other discussions about assessment for things like smoking history, adjustment, sleep apnea, all very, very important.
Did I touch on all of it? Megan?
[00:24:08] Speaker C: Yes, yes. And Janelle, if I missed anything, feel free to jump in.
[00:24:14] Speaker A: So yeah, just sort of thinking about making sure that we have those referrals to the care team that we about some of the testing that gets done by those folks when we're thinking about putting together a psychology treatment plan and assessing for knowledge about or understanding from the patients about what some of those teams are recommending, for example, helping in supporting access, that kind of thing.
So just next thinking about assessment, I think people really nailed a lot of this already.
So when you're thinking about the domain of breathlessness, learning about your pulmonary colleagues, pulmonary function tests is really important.
So those common measures that they're using like spirometry and pulse oximetry and getting a basic feel for what the numbers are, what's normal, what's scary, and being able to communicate with patients about how they understand that is important.
Understanding people's medications and supplemental oxygen needs can really help with treatment planning. So for example, a lot of people who require supplemental oxygen to go throughout their day will also report feeling like they're anchored, socially isolated, not able to get out, because planning how much oxygen you have to get from place to place becomes a problem solving barrier. In addition to some of the embarrassment that people often feel when they're wearing a nasal cannula and taking tanks with them. For example, there are ways to measure functional impairment associated with breathlessness. So at Hopkins, in our pulmonary function testing labs, they often do these surveys, which could be done by a psychologist, the Medical Research Council Dyspnea Scale, so that we call that the MRC or the modified Borg, which has a dyspnea
[00:26:29] Speaker I: scale of note before Megan continues. According to the Cleveland Clinic, dyspnea is the word healthcare providers use for a patient's feeling of shortness of breath.
It's the sensation that they can't get enough air into their lungs.
For a patient, it might feel like their chest is tight, that they're gasping for air, or that they're working harder to breathe.
As mentioned earlier in the presentation, heart and lung conditions are common causes of dyspnea in patients, but anxiety, limited physical activity and other conditions can also cause it.
Now back to Megan. She is Further describing the use of the MRC or modified Borg assessments.
[00:27:11] Speaker A: What you do in those situations is ask the patient about a really specific task and how hard it would be for them to get that done when they're taking into account their breathlessness.
Notably, as again, as Megan mentioned earlier, there are intersections of anxiety and breathlessness. And so we found that there is a breathlessness catastrophizing scale. And not unlike pain, breathlessness catastrophizing is associated with people's ability to do activities and their functional impairment. So doing some assessment with a breathlessness catastrophizing scale can give you some insights into that.
People already mentioned the health behaviors domain, so exactly smoking and thinking about motivational interviewing and linking people to smoking association often important sleep, as a lot of folks mentioned, I really would also worry about sleep apnea and people with pulmonary conditions and nutrition as well. As we find people get more breathless or have more severe disease, they can get what we call cachexia or cachectic and eat less over time because it's just harder functionally to get to and prepare food.
So asking about how people are eating and and preparing food for themselves is often something to touch on.
Fatigue and fatigue management are a really big deal for people with breathlessness and pulmonary conditions. And so we use the FIMS to measure fatigue in this population.
And as a lot of folks touched on, just some general mood assessment can be important. So we do the PHQ9 and the GAD in our outpatient sett.
But I think this is an important point to sort of ask for additional questions about guilt and shame, the understanding of the causes of the disorder, trying to allay concerns about things like smoking and have frank conversations with patients about how much they think that's affected their condition and hopefully allaying some of the self blame or shame.
And certainly in people with ILD where they've acquired pulmonary conditions that are associated with work environments, this is often associated with anger and injustice that can get in the way of people's full functional recovery. So for example, Ann Marie Warren has done a fair bit of work around injustice and recovery from severe illness.
And asking people about some of those emotions can be important too.
Certainly anxiety is a thing that we assess in that group.
And in cases where people have either been hospitalized or been involved in a situation where they became breathless in a really intense situation, we've had people become breathless in elevators and then have acute stress disorder or PTSD symptoms around that. So thinking about a scale for PTSD never hurts. If your patients can get through a giant battery like this.
So I borrowed this slide from our colleague Tracy Van Orstal, who's a neuropsychologist in the medical psychology practice at Hopkins.
This is what they are doing with our Covid survivors, especially those who've survived ICU or had severe pulmonary complications.
We worry about things like hypoxia, anoxia, persistent changes in blood and oxygen flow to the brain, and so making sure that people's cognition is functionally intact is a really important thing to touch on too.
[00:31:25] Speaker B: This is Megan Byer jumping in. For those who are listening by podcast, you may not be able to see what the neuropsychological battery is is that was referenced in Dr. Hosey's slides, so I wanted to share that with you. Now they use the RE Auditory Verbal Learning Test or rayvault Oral Trail Making Test number span forward and backward and Verbal Fluency, both letter and category cued.
If you want to see the full slide, please check out the video on YouTube or on the learn.findempathy.com course page.
Also, we pulled together the full battery of assessments recommended by Dr. Hosey into one document, which is also available on the learn.findempathy.com course page for those who purchase the CES for this course. Now back to Dr. Hosey's presentation.
[00:32:19] Speaker A: This is the battery that she does and notably all of that can be done via telehealth.
So if that makes things easier Again, I think just touching base with people about their understanding of their medical condition, what they perceive has caused it, what things are making their condition worse or likely to lead to a hospitalization or a flare. So for example, you heard a few of the patients mentioning the problems of infection in pulmonary conditions.
So people who don't have optimal lung function may have a harder time clearing some of the infectious materials and wind up with severe complications or recurrent pulmonary infections.
What are the helpers? What helps me sort of manage throughout the day things like physical activity, staying engaged in pleasurable activities and then getting into we'll talk again about this a little bit later. But but just getting a sense of patients understanding about how severe their diagnosis is and making sure that maps onto your multidisciplinary colleagues, understanding prognosis and course not unlike other conditions, the course for some of these disorders can be highly variable. So interstitial lung disease. Unfortunately in the ICU I've seen people go from diagnosis to death with in an order of six months and that's not the typical course, but it can happen. And so the uncertainty of coping with that is not unlike the uncertainty, I think of people living with other chronic diseases like multiple sclerosis or cancer recurrence, things like that.
So finally getting to some of the fun stuff and then I'm gonna be quiet and and hear from other people about what they're doing and thinking intervention.
So here's a fun cherry picked study where they took respiratory nurses and trained them to do an eight session CBT and compared that to an educational leaflet. They did a high degree of fidelity monitoring in this particular study.
And then nicely, it was associated with lower anxiety and depression at three months.
That depression did not maintain to six months, but it did maintain for anxiety.
And your bang for your buck is that the intervention was more cost effective than the just leaflets at 12 months, meaning that over the course of that year they lowered hospital admissions and ER visits. So whenever we're looking for buy in from our healthcare practitioners or providers, this seems to be a high end area.
So sadly, when we start to get into some of the systematic reviews about CBT for breathlessness and mood or mindfulness interventions or mbsr. The mindfulness.
Somebody help me. Mbsr. Mindfulness based Stress reduction.
[00:35:50] Speaker C: Stress reduction.
[00:35:51] Speaker A: Y thank you.
Evidence starts to look weaker, sadly.
However, when you look at the systematic reviews and meta analysis, really what's happening is that we have a lot of providers who are now becoming more interested in these outcomes, especially since people are tending to live longer with these conditions.
And so the question becomes like how much dosing do we have and how much do we really, you know, really think we need in order to be effective?
You know, your leaflet is clearly not going to be as an effective as an eight session intervention. But if you have a PT doing a three session intervention, do we really expect that to be associated with outcomes?
You know, the fidelity monitoring is really important in some of these situations where it's not a trained psychologist administering the intervention. Intervention.
So, you know, that's sort of a question.
Catching patients at various stages of disease might be an important thing to think about. And then there's just a lot of heterogeneity in thinking about what symptoms people are actually targeting as their outcomes in some of these studies. So just a lot of heterogeneous data.
So in the face of that we press on.
So here are some of the things that I like to think about when I'm thinking intervention. So Spathis and that Cambridge Breathlessness group I mentioned earlier came up with the Breathing, Thinking and functioning model, which is a nice foundation to start talking to patients about that relationship. MEGHAN mentioned between the way we think and feel about breathlessness and how that impacts our day to day, it's never probably going to be a one to one where we can tease apart, you know, is this an asthma attack or acute exacerbation? But what can I do to slow that process down and maybe make exacerbations less frequent or severe over time?
This is a sort of more broken down version, but you can see here that the thinking gets into thoughts and misconceptions that we might be able to reframe.
The emotions that come along with a lot of that.
The functioning where we think about people who are driven by avoidance or fear might have lower activity levels, less social support, and then actually functional deconditioning, which then worsens their breathing. So you see people with inefficient work of breath patterns or, you know, if they're scared, increased breath rates, which just sort of worsens the whole cycle.
So this is the education that we can think about breaking down for patients with the goal of saying this happens to most folks with pulmonary conditions. And the good news is we can stop it at any one of those points. So what? One of the things that we'll talk about is how to build skills to change that sensation of shortness of breath, to modify the way that we're thinking in a more gentle way to reduce some of those fears and to have more calm in the body as well as the mind. And so in tackling one of those first bubbles, the sensation of breathlessness.
Pursed lip breathing has been demonstrated to be highly effective in people with copd. And so it's often what we teach our patients with interstitial lung disease as well.
What this asks patients to do is to breathe in slowly through the nose to a count of one, two, and to purse your lips and breathe out slowly like you're blowing out a candle to 1, 2, 3, 4. So you notice that this is different than box breathing or some of the things that we teach to people who don't have breathlessness concerns. And that's because we think that people would have a shorter breath cycle than people without a pulmonary condition.
And the pursing of the lips results in what we call higher positive expiratory pressure in the lungs, meaning something about pursing those lips together makes the exhale more effective at clearing the CO2 out of the lungs.
I'm not going to show this, but the American Lung association has a really nice pursed lip coaching video on YouTube.
And a couple of my patients have told me that if they're starting to feel breathless, they kind of whip out their phone and play this video just to sort of cue them about about
[00:41:11] Speaker B: the pursed lip Megan Byer Here for another clinical application moment.
Please watch the pursed lip breathing video from YouTube, which was referenced by Dr. Hosey. We've included this video in the course page on learn.findempathy.com
[00:41:30] Speaker A: tons of our patients tell us they love having a handheld fan. There's something about having the fan blowing in your face that decreases that sensation of breathlessness is increases a sensation of control over what the sensations are on your face. And nice enough, in 2017 they actually did do a little study to validate that at least perception wise, this pretty consistently helped patients feel better in moments of exacerbation or stress like with all of our patients. You know, centering around values and purpose can be really important, especially when working with people who may have given up some of the things that matter to them. And so often coming up with a list of of things that people are hoping to get back to what brings them meaning and purpose in life can be important. So I like this model from this is pulled from an ACT workbook but helps people reflect on areas of love, work, play and health.
And just sort of reminding people that they don't have to be a hundred percent better before they can start to tackle these types of things. And so when there is fear of getting out, when there is fear of doing previously enjoyed activities and it's been cleared and okayed by a physician or some of our PT colleagues, we'll work towards subjective units of distress and problem solving model.
So for example, you could take the list that you made on that last page and start ranking how scary is this? Is it something I can do today?
It's not distressing at all and I know I know how to handle this to the scariest thing ever. So the highest thing on your list might be to get on a roller coaster or whatever.
And once you have those ranked working people through, you know, what are my fears about this activity? Can I give a percentage rating of how true that is or isn't? How much do I believe that?
What do I need to plan? So for example, if I'm going outside the home to do something I love, do I need to take my oxygen tank and how much?
What strategies can I use that I've picked up from my PT OT psychology colleagues and how do I ready myself for these tasks? And we found that a slow build from some of the more easy stuff to do up to the harder things to do builds people's self efficacy and also becomes a bit of an exposure model for people.
So these are some of the things for anxiety management that can be somewhat tangible for folks.
Just the last point I'll touch on before I pause for questions and discussion.
In the last few talks I've given about more related to ICU and things people have often brought up. Well, how do I ask about about prognosis? How do I talk about conditions that might be progressive or might result in people's death? And these are two really nice resources, the Conversation Project and Vital Talk.
So the Conversation Project is for all humans of any age.
It talks to people about their most important life goals and how to identify a healthcare proxy. So Healthcare Proxy being the person who would make medical decisions for you in the event that you can't.
These are really important conversations for people to think about and have, especially if they're living with serious illness.
A lot of people just think about like their partner or their, you know, parents as the default healthcare proxy. However, if you get into some of these conversations, you realize like those people might fully understand your wishes, but then not be willing to follow through on them. So you have conversations with people until you find a person who is willing to both understand your wishes and follow through on them.
The second resource, Vital Talk, is designed for healthcare providers who are working in serious illness.
So that's not necessarily for patients so much as it is guides and scripts for working with sicker people.
So the nice thing about Conversation Project is that you can see that there's like a continuum on all of these questions. And I think that that's a way to be very culturally competent and sensitive in these situations where not everyone wants to be the person making their own healthcare decisions. There are people who would defer to a family member or a loved one automatically, regardless of cognitive status.
There are some people who might not want a full court press on their medical conditions. And so saying I worry that I won't get enough care to all the way to I'll get way too.
These are nice ways of sort of acknowledging that there's a continuum here and everybody has different preferences.
And then here's just some of the lists of guides on Vital Talk. You can see they talk about transitions in care, things that I think most folks would be very already skilled at here, like responding to emotions.
But other important things like talking about dying, like how do I say goodbye to my patient who I know is dying, things like that.
So I'm going to. Let's see, that puts us at 5:49.
Leaves us like 10 minutes to have discussion about stuff I left out and or open for questions.
[00:47:54] Speaker C: Megan, thank you so much. This was a really fascinating, interesting topic. I loved all the research and very, very practical tools at the end, which I thought were incredibly valuable. So thank you so much.
Does anybody have any questions or comments?
[00:48:10] Speaker A: Have you noticed any changes as Long Covid have become more of a thing in terms of expectations, interventions that are
[00:48:18] Speaker G: useful for that population versus, versus copd, emphysema, any other lung pulmonary conditions?
[00:48:25] Speaker A: So I wish my colleague Elizabeth Nichols was here. Was she here like a couple months ago? Megan, talking about Long Covid.
I am in an ICU bubble, sadly. So I am a little bit out of the loop on what's been happening most recently in Long Covid.
But I do know that breathlessness can be a major symptom.
[00:48:51] Speaker G: Let me jump in. I think there's a recent study that just was published. I think someone's mic is on. Let me just see.
Sorry. I think a recent publication is actually showing that there's quite a bit of vasoconstriction they're seeing in Long Covid. And just given what Megan just talked about in terms of like, pulmonary issues and like oxygenation, if you. You have quite a bit of vasoconstriction, your sort of blood circulation has, like, decreased. So we're probably going to be seeing a lot of that, or at least there is probably some data showing that, at least preliminarily that that may be true. Yes. So I think it's been related to potentially sort of cation channel dysfunction and vasoconstriction.
And hence people are saying that those who drank. I know this is kind of funny, but those who actually consumed alcohol during COVID have a lower likelihood lung called Covid because of the vasodilation that happens with alcohol.
Don't tell your loved ones that if they're drinkers.
But that is sort of the recent studies that have been published, actually, interestingly enough.
And sorry, Megan, maybe I actually had a question before that. Yeah.
So, you know, it's interesting. You know, you come from a place where a lot of the inpatient work, a lot of these patients may already have a diagnosis, like coming, like saying you guys in. On an outpatient side, we kind of sometimes have patients coming in with breathlessness but have no idea what's going on. And yeah, know, being so far from being in, in, you know, doing work in. On the inpatient side, a lot of times we jump to the first thing that we know psychologically, which is anxiety and panic and so on.
So I think when you sort of. I, I remember I had a patient that came in for, I think it was like tenus and insomnia and he had started also some treatment with a somatic ocd.
For somatic ocd because he had like issues with breathing. So, you know, we all know tinnitus is, you know, sort of connected to anxieties and sort of high activated brains and so on and so forth. So, and, and something. When he was telling me about this, it was the, the breathlessness was happening a lot during activity. So I got worried. I'm like, why don't you just, just go, go to primary care, get this checked out.
And when he did that, he actually, they sent him for a scan because his lungs weren't sounding good and he had interstitial lung disease. So that was really eye opening for me that a lot of times on an outpatient side when we don't have these diagnosis and people are coming in with, you know, breathlessness, that we can also miss quite a bit of what may actually medically be going on. So assessments on outpatient side should definitely be. And sort of pushing patients to definitely get some medical workup done if they haven't done so already, especially if there's history of smoking and all that. This guy didn't have that.
[00:51:44] Speaker A: Yeah, totally. Just like, when's the last time you saw a physician?
You know, did you feel like your physician listened to your concerns or had time to listen to all of your concerns? That's where it gets so scary. I'm with you. I mean, you heard the people in that video sort of mentioning that their doctor said they're fine. You're just getting old, know things like that until they got a thorough workup.
So, yeah, I think that those are really important things to touch on for people with new symptoms.
[00:52:15] Speaker C: Any other questions or comments?
Well, thank you so much, Dr. Hy. This was a really great talk. Oh, wait, there's a few things in the chat here. Everybody's saying thank you and appreciating the, the tools that you shared.
[00:52:28] Speaker B: So thank you again for coming to
[00:52:30] Speaker C: talk with us and I really, truly appreciate it.
[00:52:35] Speaker A: Yeah, thank you guys so much. It was great to spend time with you. Appreciate it.
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[00:53:51] Speaker A: Sam.
