A palliative care physician’s brain bleed [PODCAST]

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“As a runner, my pulse rests around fifty, but the ICU team had worried when it dipped to thirty-five, and my blood pressure hovered around ninety over fifty. Understandably, bags of saline were hung, and steroids were added. My headache improved, but my ankles disappeared, and I was often short of breath. Upon discharge, I went into full diuresis mode and spent the whole night after Thanksgiving toddling to and from the bathroom. As I passed through my parents’ room, my mom, brows furrowed, muttered: ‘You are going to pass out if you keep going like this.’

Early in the morning, I was shaky and frail but wanted to take full advantage of the large oval bathtub with the delicious array of bath oils and loofas. I crept to my mother’s side and informed her that I was going to take a bath, ignoring the nausea that was just starting to burn deep in my throat. I sat astride the tub and felt the warm stream of water flowing into the lattice of bubbles.”

Eve Makoff is an internal medicine physician.

She shares her story and discusses her KevinMD article, “A physician’s story: ‘Please come quickly. My brain is bleeding.’”

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Hosted by Kevin Pho, MD, The Podcast by KevinMD shares the stories of the many who intersect with our health care system but are rarely heard from.

Transcript

Kevin Pho: Hi, and welcome to the show, where we share the stories of the many who intersect with our health care system but are rarely heard from. My name is Kevin Pho, founder and editor of KevinMD. Today on the show, we have Eve Makoff. She is an internal medicine physician and a palliative care specialist, and she wrote the KevinMD article “A physician’s story: ‘Please come quickly. My brain is bleeding.'” Eve, welcome to the show.

Eve Makoff: Thank you.

Kevin Pho: So we’ll talk about your article in a little bit, but first off, can you share a story and your journey to where you are today?

Eve Makoff: Sure. My journey is a little bit unusual in that when I finished training, I did a fellowship in nephrology. My father is a nephrologist who’s now retired, and I had kind of wrestled with which direction to go in. I had a job waiting, and I liked it, so I decided to do extra training and join my dad. I did that for about six years, had three pregnancies during that time, and then kind of realized that it wasn’t exactly fitting with what my passion was. I was really drawn to the hospital. I was really drawn to the sickest patients.

So after taking a little bit of a leave, I came back and became a hospitalist, and through that exploration and working with sicker and sicker patients, I actually got drawn to palliative care. My boss took over palliative care in the institution where I worked, and I went over with him and started to work in palliative care, and then more specifically in the cancer center. So I kind of had this progression from internal medicine, outpatient nephrology, some inpatient work, towards just focusing on the sickest of the sick patients, and that’s what I do today.

Kevin Pho: Now tell me about the day-to-day workflow of your palliative care practice, and how is the pandemic affecting that?

Eve Makoff: Yeah. So I recently took a job that was telehealth, and I actually took the job right before the pandemic. It just so happened that it worked out. I am the medical director of a palliative program within a larger program that does house calls, which is really focused on not only the sickest patients, who have trouble getting in to see their doctors, but the Medicaid population, so people with really significant social determinants of health that are impacting their health. I’m doing both. I both see internal medicine patients, and I also do the palliative care and help run the program.

I would say that our patients are inordinately impacted by COVID. We have many homeless patients. We have people who are unwilling or reticent or suspicious about going to the hospital or seeking health care. Surprisingly, some of my patients have actually done really well having had COVID. I’m shocked. So it just sort of points out to me that it’s somewhat related to your situation, but also a little bit random with the courses. But what I do feel from everybody, whether they’ve had it or not or been exposed, is a high level of anxiety and a lot of loss, because people are losing their income in addition to family members, their health, and the way that they’ve done anything prior to this pandemic.

Kevin Pho: I’m an internal medicine primary care physician, and from a palliative care standpoint, is there any advice that you could give to the primary care clinicians who may be listening to this podcast?

Eve Makoff: Yeah. I mean, I think to slow it down. Even within my own job, most of the people are not trained in palliative, and it’s a great group of people with their hearts in the right place. But when I’m working with people, either hearing about cases or involved in cases, I’m like, “But how are they feeling? How is the patient doing? How are they sleeping?”

To me, if people say, “I’m fine, I’m fine,” I always ask how their sleep is, because that usually kind of unravels or reveals that something’s going on. I’ll often say, “Is it because your mind is racing and you’re worried about a lot of things?” And they say yes. And then you’re thinking, they just told me they don’t have any anxiety. But I think it sort of underlies a lot of people’s issues right now. The anxiety is just there.

Kevin Pho: Sure. What are some of the challenges that you face every day?

Eve Makoff: Trying to do the best that you can do. I mean, the population that we’re working with is really challenging. We work in several different areas in California, and we’re growing. We’re also out of state, but not with providers at this point. We have a subset of patients that live in Butte County, and I don’t know if you’re familiar with the Paradise fire that happened a couple years ago. This group of patients has nothing, and all the doctors left that area.

So we’re trying remotely, knowing that we can’t really serve as a primary care doctor, and that’s not really our role. We’re supposed to be sort of some connective tissue, trying to get them connected to resources and doctors. These are people who just can’t get in to see a neurologist for a year. Even if they have COVID, they can’t social distance. So I think, just again, getting back to their social and economic situations, that’s probably the biggest challenge.

Kevin Pho: Sure. So let’s touch upon the KevinMD article that you wrote, “A physician’s story: ‘Please come quickly. My brain is bleeding.'” Now, for those who haven’t read your story, can you walk my audience through it and perhaps share the reasons why you decided to write it?

Eve Makoff: Yeah. I mean, I think, so in 2012, I was having my normal day, and I got on my treadmill as I normally do in the morning. I remember in medical school learning about the worst headache of your life and how you have to take that seriously, and I didn’t know if it would be so obvious. But I ran, and I literally remember looking at the numbers on the screen of the treadmill, and it said two miles. All of a sudden, I had the weirdest sensation, and that was the first word that came into my mind. It wasn’t like, “This is the worst pain.” It was like something was blown out in the middle between my eyes, and it was almost black around that.

I somehow stopped the machine and got on the ground, and I called 911 and said, “I’m having a brain bleed. Come get me.” I had to call my ex-husband because I had all my children upstairs, and it took 20 minutes for EMS to come.

I mean, I was really lucky because I didn’t have an arterial bleed. I didn’t have an aneurysm. I had what’s called a non-aneurysmal subarachnoid hemorrhage, and so I had a little bit of blood in the subarachnoid space, probably from, as a hematologist I’m friends with said, “You just broke a blood vessel,” right? I mean, literally. But it doesn’t like to be in there. Your body doesn’t like blood in there.

So once the shock and the strangeness ended, the severe pain ended. I remember rolling in, and I made them go to the hospital where I worked, which was not the closest hospital. I don’t know why they listened to me, but they did. It was still five minutes, so it wasn’t a big deal. The second I rolled into that ER, where I’d been for practically 20 years at the time, I started crying, and I was like, I knew something bad was happening.

I think that I had a couple of years of a little PTSD, because they sort of put me on stroke watch for 10 days after, and that whole concept. They had to check the Doppler to make sure that I didn’t have spasm. That was sort of a marker for if you’re at risk of having a stroke. I think just that concept that I could have a stroke was really the hardest part. Obviously, I’m really lucky I didn’t, and I’m lucky that it was some little bleed that just resolved itself.

As I’ve come to realize now, years later, and doing a lot of writing and getting published in various places, sometimes you write something better if you get a little farther away from it. I think I knew for a long time that I wasn’t ready to write about it. I think I have more to write about it, and I have written more. But I think part of it came out of an exercise that I did in a writing class that I took, which is how it started, where I said, “OK, maybe this is the time for me to write about it.”

But I’m sure there are a lot of stories about doctors being sick. We all remember that movie The Doctor, which was when I was, I think, a medical student or something like that. That had a lot of impact on a lot of us and felt like it was very unique. And actually, the story that I wrote was more about what happened after that hospitalization, and, as a patient in the ICU, realizing that they were tending to the most urgent issue, but they weren’t tending to some other issues, like what was going to happen once I suddenly went off of steroids and once I went off fludrocortisone and things like that. What was going to happen to my cardiovascular system?

And that’s sort of what happened when I left, and then just all the water. I mean, I had edema everywhere. I had lost like 20 pounds, but I was edematous and all that. I passed out and almost got much worse injured because of that. My mom literally caught me, because we were in the bathroom at the Four Seasons and there was a marble floor, and I hit my head, then I could have had a worse bleed.

So there’s just so much more that can be said about that. I had wonderful doctors and nurse practitioners and nurses and everyone else, and of course, the whole hospital knew me. I had more visitors than anybody else did in the eighth-floor ICU. But I think it’s that concept of what do we do after someone’s in the hospital, in the ICU, for nine days. And then I begged for them to let me go home early, which was probably my fault.

Kevin Pho: Now, how did this story and event change you as a physician?

Eve Makoff: Oh, I think, I mean, I had just taken my boards for palliative care when this happened. I’d just gone to my first meeting, the Center to Advance Palliative Care meeting, and I had to have a PICC line put in because my arms were black and blue, and they were giving me sodium. I think I was having a little cerebral salt wasting. And that PICC line hurts so much. The whole time, I had chest pain, and every time they flush it, you taste bitter salt in your mouth, right? And there are all these other things.

I think for a long time, and still, and I think it’s part of me making a full transition to palliative care a year later, I’d never have downplayed or underestimated the suffering that a small procedure or a medication side effect can do to a person. I always believe the patient. I don’t say, “No, that couldn’t be that medication.” I say, “You know what? I haven’t heard that before, but everyone’s body is different.” Like, they injected me with dexamethasone, and I had that weird prickling feeling. All of this stuff is a big deal when you’re going through it. So in a way, it was a good way for me to become more empathic.

Kevin Pho: We’re talking to Eve Makoff. She’s an internal medicine physician and a specialist in palliative care, and she wrote the KevinMD article “A physician’s story: ‘Please come quickly. My brain is bleeding.'” Eve, is there something that you know now that you wish you knew back before the pandemic started?

Eve Makoff: Before the pandemic started? I mean, I think I didn’t know that telehealth could be so effective. At the beginning, I joined my job, which normally has nurses in the field, so they get patients up on Teams or on some video platform. When I came, the nurses weren’t even able to go into the field, so we were literally doing phone calls. I had to do a full palliative care consult, a follow-up conversation about end-of-life goals of care, by telephone with no video.

Now, it’s really hard, and I think the next thing I want to write about is how you connect emotionally through the phone. I mean, I have that kind of brewing in my head. But it is possible, and it’s definitely better than not having that contact and not having that conversation. So I think it’s just new skills that you can develop. And it does allow us in palliative care, I mean, we’re exploring reaching people who we will never see in person, where we don’t have any nurses, at least having telephone contact to do some palliative care. So I think that must be probably the key thing that I’ve learned.

Kevin Pho: Sure. Can you give us a sneak preview? What’s the number one tip that you could share for us to maintain that emotional connection while doing virtual visits?

Eve Makoff: Yeah, and I actually started writing something about it. I think what we’re taught in palliative care is about not rushing and about not trying to fix things, and just holding space or being present when someone’s being emotional. It’s super awkward on the phone, but you have to let the line go blank. I hear a patient, and I’m like, “Are they crying? OK, wait, I think they’re crying.” I stop myself from saying, “Are you OK? What can I do? What’s happening?” I just stop, right?

So just allowing yourself to pause, so that the patient doesn’t feel like you’re uncomfortable with their expression of emotion. I think you can do that on the phone. It’s much more awkward, but just remember, it’s still about pausing, and it’s still about allowing people to have whatever reaction they have without us rushing to make it better, give them tissue, say it’s OK. So yeah, I think it’s that.

Kevin Pho: And my final question: Do you have a take-home message that you want to share with the KevinMD audience?

Eve Makoff: I mean, I think that in this time, emotions are high. I see it in my company, I see it with my patients, I see it in my family. I think it’s really important to find something that gives you grounding, and for me, that’s writing. I’ve been taking nonstop writing classes. I have a four-day-a-week, 10-hour day, and I get Thursdays off. On Thursdays, I do my writing, and sometimes on weekends, and that, for me, replenishes me. I think we all have different outlets, but it’s really, really key right now that we find something that continues to make us feel grounded and gives us joy.

Kevin Pho: Eve, thank you so much for sharing your time and insight. Thanks again for being on the show.

Eve Makoff: Thank you.

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