“I spent the first three days sitting next to my dad’s hospital bed, watching his chest rise and fall slowly. He was asleep the majority of the time, fighting off something unknown. Anytime he moved, I jumped up from my chair and stood where he could see me just in case his eyes fluttered open for a split second. I wanted him to know that I was there, that I cared.

I sat for hours listening to the unfamiliar noises in the room, like the IV pump, which sounded like a miniature helicopter hovering nearby. As the doctors and nurses came in and out of his room, running tests, trying to figure out what was wrong, I repeatedly had to say to them, ‘This is not his normal. He has late-onset Huntington’s disease (HD).'”

Erin Paterson is a writer and the author of All Good Things: A Memoir About Genetic Testing, Infertility and One Woman’s Relentless Search for Happiness.

She shares her story and discusses her KevinMD article, “Advocating for a sick parent by confronting physician bias.”

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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. Rate and review the show at KevinMD.com/rate. Subscribe at KevinMD.com/follow.

Today we welcome back on the show Erin Paterson. She’s a writer, and she’s the author of the book All Good Things: A Memoir About Genetic Testing, Infertility and One Woman’s Relentless Search for Happiness. Erin, welcome back to the show.

Erin Paterson: Thank you so much for having me.

Kevin Pho: So we’ll get into your latest KevinMD article, titled “Advocating for a sick parent by confronting physician bias.” But just briefly, for those who didn’t listen to our first few episodes together, let’s share a little bit.

Erin Paterson: I am a writer and a Huntington’s disease advocate. I was diagnosed as gene positive for Huntington’s disease in my early 30s, though that was about 15 years ago now. I was diagnosed as gene positive, which means that I will develop the disease one day. I just don’t know when the symptoms will start. Huntington’s disease is a genetic disease. It’s neurological, and it’s defined by uncontrolled movements, emotional issues, and cognitive impairment.

Kevin Pho: And for those who didn’t get a chance to listen to our first few conversations together, I highly recommend you look for those. That’s where we certainly talk more about your genetic testing and Huntington’s disease. So, your most recent article, “Advocating for a sick parent by confronting physician bias.” Tell us what this one’s about.

Erin Paterson: So my dad has Huntington’s disease, and earlier on in the year, unfortunately, he ended up in the hospital. I spent six to seven hours standing by his bedside every day advocating for him, because unfortunately he was so sick that he was not able to communicate. He lost his voice and could only whisper out one-word answers. He was on oxygen, and he was so weak that he could barely even lift his arm or open his eyes. Most of the time he was asleep, except for when he briefly woke up to have something to eat.

I found that most of the doctors, nurses, and specialists that came to treat him or to try to figure out what was wrong with him would jump to blaming Huntington’s disease for the reason that he had ended up in hospital. I found that I was spending the majority of my time explaining to them what Huntington’s disease was and pushing them to look past that disease to find the underlying cause, or the real reason that he was in hospital.

So every conversation was about what my dad’s baseline was. My dad has late-onset Huntington’s disease, which is not as common. Most people tend to start developing symptoms of Huntington’s disease in their 30s and 40s. My dad didn’t develop symptoms until he was in his late 50s, and he’s 78 years old and still doing pretty well. So that’s not really the norm for that disease.

But people would walk in and assume that it was normal for him to be bedridden, or it was normal for him not to be able to feed himself or to be able to express himself. So most of my time I was saying, “This is not my dad’s normal. He was just playing shuffleboard last week with my cousin. I just had a phone conversation with him a couple of days ago, and he normally walks down to the dining hall of his retirement home and eats supper by himself.” So those were all the conversations that we had.

Oftentimes people would just say, “Maybe this is just his disease progressing.” And I would have to constantly say, “This isn’t what disease progression looks like for Huntington’s disease. There’s got to be another reason why he’s so sick.”

So I found that experience to be very exhausting, because there I was, extremely worried that my dad was even going to make it, and I had to keep speaking to every single person about this, and there were a lot of people coming in and out. I’m not surprised that it happened, and I don’t blame the doctors or the nursing staff for this happening. I just felt it was really important to write an article to serve as a reminder for professionals, medical professionals, to just stop and think about what biases they might be walking into the hospital room with.

Kevin Pho: Now, I know you can’t speak on behalf of those medical professionals, but why do you think they would jump to a progression of Huntington’s disease as an explanation for your father’s symptoms?

Erin Paterson: I think maybe it might have seemed like the most logical thing to them. I’m not really 100 percent sure. Again, he has late onset, so a lot of people are in much worse condition than that. I guess it must have just seemed like that could be the reason. So I was glad I was there to push them to look past that and say, “No, I don’t think that’s the reason. I think you should check out these other things.”

Kevin Pho: So take us into the room. When someone came in with those preconceived notions and you pushed back on that, in general, how did that interaction progress?

Erin Paterson: I was actually pretty surprised. People were pretty open to listening to me. I didn’t really get any dirty looks or bad feedback from people. I got the feeling that they understood that I was just a caring daughter who wanted the best for my dad, so they were open to looking at the things that I was suggesting. So it was a good experience that way.

Kevin Pho: Did you have any trepidation about speaking up? Because there are a lot of patients and their families who are a little bit more on the timid side and may have second thoughts about speaking up against the health care team. What were your thoughts? Did you have any trepidation or difficulty in doing that?

Erin Paterson: No, I was just kind of in the moment, and I knew this is what I needed to do to get my dad the help that he needed. So I really didn’t think twice about it. I would say things in a kind way, and I don’t ever want to offend anybody, but I wasn’t worried about the fact if they did get offended. I just thought it was most important to say, “No, I don’t think it’s this. I think it’s something else. You need to look at something else.”

Kevin Pho: So tell me what happened next. You pushed them to look for something else. How did the health care team respond? Did they do any further tests? Did your interaction with them push them in a different direction?

Erin Paterson: I feel that it might have. I mean, I can never know what was going through their heads, but from the very beginning I kept saying to them, “I think that my dad’s having a reaction to the COVID vaccine.” I said, “I feel like every time he’s had a vaccine, he’s ended up in emerg.” But I wasn’t 100 percent sure, so I just kept saying, “I think it’s from the vaccine. I think it’s from the vaccine.” And it did take about three or four days for us to finally come to the conclusion, after they tested all these rounds of things, that yes, he did have myocarditis from the vaccine.

Kevin Pho: So of course, I’m speaking from the perspective of a physician, from the health care team. After you reflect on this interaction, what’s one thing that that health care team did well, and what do you think would be one thing that they could do differently the next time?

Erin Paterson: I think for sure they always treated me with kindness when I was sitting there. Everybody says the medical professionals are burned out because of COVID, and I really didn’t see that when I was in the hospital. Some of the staff there would ask me, “Are you OK? Do I need to get you some water?” Or if they would see me crying in the hall, they would come over and speak to me. That didn’t seem like the typical burned-out medical professional that I’ve been hearing about all over the news lately.

So I think it was really lovely that they were so kind to me, a worried caregiver, especially because it was during COVID and there were restrictions on visitors, and I was the only visitor allowed in to see my dad. So I was carrying that burden of being his caregiver all by myself, which was a really difficult experience.

Kevin Pho: And tell us one thing that we could have done differently if this interaction were to happen again.

Erin Paterson: I think it’s really important that medical professionals look at every patient as an individual. I know that they’re coming into the room with their experiences of certain diseases, and sometimes they have a little bit of experience and sometimes they have a whole lot of experience. I think it’s really important to consider that your experience with the disease should just be a starting point.

I think it’s really important for patients to be looked at as individuals, and I think they’d be better served if they looked at the individual and their individual circumstances and needs. As I mentioned, my dad’s Huntington’s is late onset, so people weren’t expecting him to behave the way he did. But they should have quickly realized that he was different than other HD patients, and that wasn’t always the case.

So even though for my dad it might take him 20 seconds to answer a question, that doesn’t mean that he’s not mentally aware. And the fact that he can only give you one-word answers doesn’t mean that he shouldn’t have a say in his medical care. He just has to be treated differently than people who don’t have those deficiencies. And he was on a floor with lots of other elderly patients, so I found it hard to believe that he was the only one who was in a situation where he was slow to respond.

For him, he just needs you to ask just one question at a time, and he needs 10 to 20 seconds to answer that question. He needs to be looked at and asked that question, and the doctor shouldn’t look at me and ask those questions because it’s easier to get the answer out of me. I think that the patient, even if they’re cognitively impaired, deserves to have a say in their health care, 100 percent.

Another issue we faced was that he was in the hospital for six weeks, so a lot of other things came up. Most of the nursing staff wrote in his medical file that he was nonverbal, and that’s simply not the case. The problem was they just didn’t take the 10 to 20 seconds to slow down and to wait for everything to process in his brain and for him to be able to spit out an answer. That medical file is going to be following him around, so if he ever ends up in hospital again, that’s what future doctors and nurses are going to see. So I think it’s just really important to really consider what’s going into those medical records.

Kevin Pho: Did you feel that your medical team had any experience with Huntington’s patients?

Erin Paterson: I only knew that they did because I found out through word of mouth that a friend of mine’s mom had been in the same hospital and in the same ward, and she had Huntington’s disease. So I did know they had a little bit of experience with it, but it is a rare disease, so there’s not a lot of patients out there every day with Huntington’s.

Kevin Pho: Right. So for those clinicians who may be listening to the show, what are some things that we need to keep in mind whenever we treat Huntington’s patients?

Erin Paterson: That they are a person, and they’re in there. Sometimes with Huntington’s patients, when you look at them, their eyes may seem glazed over, and it might not look like they’re even looking at you or listening to you. But they are able to respond to what you’re asking them. You just have to do it in a way that’s suitable for them.

So walking into a room and firing off three or four questions in a row and hoping to get an answer to those three or four questions is not going to work. The medical professionals really just have to slow down and take the time to interact with that patient. I know that’s really hard because you guys are really, really busy, but if you don’t do that, then you’re not going to get the answers that you need from the patient or from the patient’s family.

Kevin Pho: We’re talking to Erin Paterson. She’s a writer, and she’s the author of the book All Good Things: A Memoir About Genetic Testing, Infertility and One Woman’s Relentless Search for Happiness. Erin, as you reflect on this episode, what kind of wisdom and advice can you give to other families who may be in similar positions, where they need to advocate on behalf of family members in the hospital?

Erin Paterson: Don’t give up. When you’re in the hospital, in the first week I was really gung-ho and talking to every single person, and I stuck around for all of the shift changes so that I could make sure when the new nurse came on at seven o’clock, I would be there to explain my dad’s condition to them and explain how he needs to be treated and interacted with. But eventually, at the four- or five-week mark, I was getting tired, so I didn’t do that as much.

So I guess my advice would be just to keep it up, and to do things like ask them to write up a communication plan, so that that communication plan is in your parent’s files, so that when a new nurse or doctor comes on shift, they can see that communication plan. And even doing things like writing up critical details: I know in a lot of hospital rooms they have whiteboards, so having the critical details about how to care for your parent on that whiteboard is important. I know that the nurses would use the whiteboards and come in and write things, but then I would also write some notes on there for them as well.

So I think even though it’s exhausting, you just have to keep it up. By doing that, you’re ensuring that your parent gets the treatment that they deserve.

Kevin Pho: And my final question: What are some of your take-home messages that you want to leave with the KevinMD audience?

Erin Paterson: The take-home message would just be to slow down if you can, listen to the patient, and speak to the patient as much as possible, even though it’s so difficult to do sometimes when you’re really busy.

Kevin Pho: Erin, thank you so much for sharing your story, time, and insight. Thanks again for coming back on the show.

Erin Paterson: Thank you so much for having me.