Patient Discussion #5

Working with your doctor to care for your parents.

What is The Clinical Excellence Podcast?

The Clinical Excellent Podcast, sponsored by the Bucksbaum Institute for Clinical Excellence is a biweekly podcast hosted by Drs. Adam Cifu and Matthew Sorrentino. The podcast has three formats: discussions between doctors and patients, discussions with authors of research pertinent to improving clinical care and the doctor-patient relationship and discussions with physicians about challenges in the doctor-patient relationship or in the life of a physician.

[00:00:00] Dr. Cifu: On today's episode of The Clinical Excellence Podcast, we have Kimberly Hamilton Ross and her doctor, Dr. Julie Oyler.

[00:00:11] Ms. Hamilton Ross: But I think having a physician who truly cares about you as a patient is helpful. You're not just, "Okay, this is my two o'clock," and you know, you have to really care about the patient.

[00:00:31] Dr. Cifu: We're back with another episode of The Clinical Excellence Podcast, sponsored by the Bucksbaum Institute. On this podcast, we speak to patients and doctors about all aspects of excellence in clinical medicine. I'm Adam Cifu, and today we have one of our occasional conversations with one of our patients. I'm joined by Kimberly Hamilton Ross and Dr. Julie Oyler. Thank you both so much for joining me today. Since we're focusing on Ms. Hamilton Ross today, I'm going to give the briefest possible introduction to my colleague, Julie Oyler. Dr. Oyler is a general internist and a professor of medicine. She chairs the Women's Committee here at the University of Chicago and is an associate program director of the Internal Medicine Residency. She is a fellow of the Academy of Distinguished Medical Educators and past president of the Midwest Society of General Internal Medicine. Thanks for your help with this, Julie.

[00:01:21] Dr. Oyler: Yeah, looking forward to it, Adam.

[00:01:22] Dr. Cifu: So, Ms. Hamilton Ross, before I ask you some questions about your time here as a patient and your relationship with Dr. Oyler, can you just tell me a bit of your story? Where are you from? What kind of work did you do? Do you have family in the area? That kind of stuff.

[00:01:36] Ms. Hamilton Ross: First of all, thanks for having me.

[00:01:38] Dr. Cifu: Absolutely.

[00:01:38] Ms. Hamilton Ross: Please call me Kimberly.

[00:01:39] Dr. Cifu: Kimberly. You got it.

[00:01:40] Ms. Hamilton Ross: Well, I was born in New York, and then moved to Chicago at six months. So I was raised in Chicago. The interesting thing is I was born on my dad's birthday. So I was the birthday present. And my history, I am a speech-language pathologist. I retired in May of '22. That was at the urging of Dr. Oyler because working with kids, special needs kids, I was always sick come September. So she's like, "When are you retiring?" So, but I did retire in May of '22 when I was caring for my mom and it was just like, I was going to retire anyway in June of '22, but I went ahead and took FMLA. So, do I have family in the area? I have one sister and we both live in South Holland. And I have a husband and then I have lots of cousins, not so many aunts and uncles anymore. My dad had, he was one of 16 and there are only three left. So yeah, but from that, there are lots of cousins all around the country. So...

[00:02:56] Dr. Cifu: So Dr. Oyler thought of you for the podcast, I think because you've had let's say, extensive experience navigating the medical field while you cared for your parents. As much as you're comfortable sharing, what was that experience all about? What was that like?

[00:03:11] Ms. Hamilton Ross: Well, as they continued to age and I knew that I needed to know what was going on because as I watched my dad, my dad was 94 when he transitioned, my mom was 90. So, my dad was first Dr. Oyler's patient and then I think I started accompanying him to visits with her and then I became her patient. And then I put my mom on because I really did not care for her physician. Dr. Oyler is a gem. She really is. She cares for the patients and you can tell that she cares for the patients. So anyway, so going through caring for them, with going to dad's visits with Dr. Oyler and then mom's visits with Dr. Oyler, it was really kind of seamless, you know, she welcomed me, if you will, I didn't feel like an outcast. I was part of their healthcare, what they needed because she would explain it to me, to them, and then I'm there and listening and then interpreting. So that, if you understand, my parents' generation, unfortunately, I feel that they just listened to the doctor and that was it and they took whatever they said and they never questioned it.

I'm a questioner because I'm like, why? What for? Why do I have to take this medicine? It's not working, blah blah. So that's who I am and what I do. So, but she helped me feel comfortable in being a part of the care of my parents. And I was talking to a relative this morning, and it was quite the journey. I will say that. I remember... I don't remember when he had his appendectomy, but there was an incident. It was here at the hospital, and it was about his care on the floor, and Dr. Oyler came up, and she's like, "Oh my God," because I'm very vocal. And I just had to let the nursing staff know, you can't do that with my dad, you know, make it easy on yourselves. And so she got a picture of me and the idea of me and it's like, "Hmm." And so, but that's how I am with... I'm their advocate. And there was another incident with my mom at a different hospital and I didn't feel that they cared for her in a timely enough manner. And I just had to write a letter. I'm a letter writer. Dr. Oyler knows I'm a letter writer. And so I had to let people know, this is what you did. This was not okay. And so we were called into the hospital and it was the two nurses, two nursing managers, or whoever or vice presidents, and one of them said, "You have quite the advocate," they said that to my mom. "You have quite the advocate," and I'm like, "But that's my role as an advocate."

[00:06:05] Dr. Cifu: Well, I was... That's funny that you use the word because as you were talking I was going to ask the same thing I mean it... Obviously, you are a professional. You're someone who, as you say, you know, is a questioner about healthcare, which I just think some of us are like that, but the advocacy role, especially for relatives in medicine, is not something that comes easy to a lot of people. Where do you think that came from with you?

[00:06:30] Ms. Hamilton Ross: Because I'm in healthcare/education, and I had a pretty good understanding, working in a hospital, of the role of family members and how important it is in the care of the patient. And so I think that's where that came from.

[00:06:47] Dr. Cifu: And then let me ask you, and then I'm finally going to get Dr. Oyler into the conversation, it sounds like, you know, so your dad saw Dr. Oyler first, you followed after, your mom after that. Did you have any hesitancy yourself about sort of bringing all the family into one place? Not at all.

[00:07:07] Ms. Hamilton Ross: No, no. U of C is a wonderful place. It truly is what I like about it. It's all-inclusive, like, we see Dr. Oyler, then we walk down the hall, we get lab work, you can get it done on the same day. They can schedule you for follow-up visits. I love that. It's so easy. And then the other thing that I really like about it is most of the time your test results come back the same day. So, I didn't have any hesitation. And my husband's also in the fold with Dr. Oyler. And he likes it too. So, we're all family with her.

[00:07:37] Dr. Oyler: Yeah.

[00:07:38] Dr. Cifu: And Julie, let me ask you, I mean, we obviously work together and have, I think, fairly similar practices. Do you, in these situations... You know, I think the benefit is obvious when you take care of a family and you sort of know the relationships, and you know how other people's health is affecting other members of the family. Are there challenges that you think about and that maybe make relationships with one person more difficult because you know everything about somebody else?

[00:08:06] Dr. Oyler: I think there are mostly joys. I mean, I started taking care of Mr. Hamilton as a very, very young physician. I was just out of my residency training and I saw him for 12 years alone, you know, by himself in his plaid leather shoes and his suits and his... He always dressed up and like brought his best self. And really got to know him, knew about his passions for bowling and church. And you know, Kimberly was the first patient that came with him and I think it was really around he had this early dementia, had this appendectomy, had delirium in the hospital, and just, it led to like a prolonged... He was confused and we both know that he got a little combative when he was in that early delirium dementia stage. And I think that led to, you know, how is he going to get better, and Kimberly with her strength and her advocacy really lifted him out of that.

And I think there are so many joys of just taking care of a mom and a dad and a daughter and her husband and knowing their family. I think, we've had multiple visits or we had multiple visits where it was like three people plus me in a room and it's all of their visits at once. And like making sure that we move through and try to finish one person first, and then move to the next person. And then sometimes we backtrack because we gave one person a flu shot. We forgot to give the first person a flu shot. And so, you know, I think sometimes more people is more people and our rooms are not meant for a four-person visit. So I think if there's any challenges, it's more probably a space challenge and like... But in that there's just so much joy of getting to know, like what's important to this family, what are the values of this family? So, I'd say, if there's any challenges, mostly space and sometimes time, but the benefits way outweigh that.

[00:09:58] Dr. Cifu: I always like moving people around on the chairs and the tables and who's on the hot seat right now.

Kimberly, it sounds like, hearing about your dad, who sounds like was, you know, he was quite a person, he sounds like the end was somewhat prolonged and somewhat difficult. Is that true?

[00:10:17] Ms. Hamilton Ross: Yeah, it was. It was because, as Dr. Orley said and just reminded me, his journey with dementia did start after he had the appendectomy because he'd never been hospitalized from the time that I've known him. So this was quite odd for him. And so as I watched him and then in retrospect, and I was putting together some of the things that he was doing and I'm like, "Hmm, that was a sign," but I didn't pay attention to it, you know.

[00:10:44] Dr. Cifu: You recognize things in retrospect, sort of before that hospitalization, that might've been a...

[00:10:48] Ms. Hamilton Ross: Yeah, so but he eloped from the house a couple of times and we had to finally figure out how to keep him in the house because he was gone for eight hours one day. And that was, yeah, that was scary...

[00:11:02] Dr. Oyler: We found him on the North side.

[00:11:03] Ms. Hamilton Ross: No, he was on 47th and King Drive.

[00:11:06] Dr. Oyler: Oh, but on the bus?

[00:11:07] Ms. Hamilton Ross: He was trying to get on the bus and the bus driver noticed there was something amiss about his conversation. I don't know who that bus driver was, but we had already alerted the police and he came home and he came in the house and he's like, "What? What? What are you talking about? There's nothing wrong." And he was dressed to the nines like Dr. Oyler said, you know, and it was just like, "Oh my God," we just didn't know. And we put him in a facility after that, but that was short-lived because he, I think it was mentioned, you know, he could be combative. And so, and he came out right before the country shut down in February 2020, which was a blessing because I don't know what I would have done personally because I was at his facility. It was within the village of South Holland. So I would go there every morning, clean up, get him up. And had they shut it down and I couldn't visit, I would have been crazy. So getting him home and keeping... We figured out how to lock the house up. That was the main thing because months before that I had locked up his car so he couldn't get in the car. And that was the one thing he was asking.

[00:12:10] Dr. Oyler: That was challenging.

[00:12:10] Ms. Hamilton Ross: It was. And then Dr. Orley had told me, she said, "He's going to forget about the car after a while." And she was right, he did, but he was asking neighbors, "Can you cut this thing off my car?" Oh yeah. And I had to tell the neighbors, whatever you do, do not do anything for... I said he's got dementia. So that journey with him, it was interesting. And then at the end... And actually I kind of knew that he was going to leave the day before he left because he wasn't eating. As a speech pathologist, I used my skills, I had to change his diet, you know, and puree his food. And then I found out later, I would crush his meds, and then he was... I found out he was spitting them out, I'm like, "Oh my gosh!" So, but anyway, so yeah, it was quite a journey.

[00:12:59] Dr. Cifu: I think the... Giving kudos to the bus driver, I think the CTA is going to use this podcast as like an advertisement. So many of us have experienced, you know, I don't know, let's call it difficulty, trauma, whatever of caring for parents or other older relatives, kind of seeing them through their final days, and I always say, like, "It's going to be hard. There's no way to make it perfect." Do you think, given like your interaction with medicine during that, are there suggestions you can give, you know, either to us as doctors or even as like other people, you know, navigating their parents through, that I don't know, would be helpful, just either specific things we could do or ways of thinking about the experience?

[00:13:41] Ms. Hamilton Ross: The one thing I think is be realistic about what's going on because there's life and then there's death and it's coming no matter what, that death is coming. And so you have to be realistic about it and understand what it is that you're dealing with your specific family member. In terms of the medical profession, you know, Dr. Oyler was really good. She was help, she answered all questions. You know, I would get on my chart and if I had to call her, I would. She was really good about responding. She understood what I was dealing with. I think she understood what I was dealing with better than I did. And because I was in it. And I was just moving forward. I didn't... All I knew to do was take care of both him and my mom, and that's all that I knew what to do, and so she was really helpful. You know, she would ask questions, "How you doing?" And all that kind of stuff, but I think having a physician who truly cares about you as a patient is helpful. You're not just, "Okay, this is my two o'clock," and you know, you have to really care about the patient.

[00:14:55] Dr. Cifu: Julie, what are your, I don't... I was going to call them tricks, but tricks is probably the wrong thing. I think, Kimberly, you articulated it really beautifully. You know, often we've experienced things as doctors multiple times, right? And sometimes you're guiding people who are going through an experience for the first time. And I often struggle with, okay, you know, how do I give advice here when I recognize that everybody's sort of experience with family is their own, right? It's personal, is idiosyncratic, that I don't have all the knowledge in the world, but we do deal with this kind of transitions, whether it be into dementia or death or whatever, you know, so frequently. Are there things that you've kind of seen happen over the years with you that have made you...

[00:15:48] Dr. Oyler: I think the main thing for me, Adam, is just continuing to like, just talk about it just a little bit at every visit. I think, I don't remember, you know, it's been a couple of years since her parents passed away, but I do remember just like, how, like, let's, now that... When he first got dementia, let's just talk about what he wants, so that like, we have his voice in the situation. Even though he has dementia, he can voice, and I think he was a little bit of a fighter like I don't think he always want... You know, he didn't want to have the discussion all the time, and I loved that about him because he wanted to, you know, fix his cough and his urination and the other things that he wanted to do but I think as I go through my, you know, I have a little, in my note template, a little bit of like, "Tell me about, like, who's going to make decisions for you and what is important to you at the end of life?" And so I don't talk about it every time, but I think, you know, a couple of times a year over many, many years helps the family and the patient ease into the conversation as opposed to the urgent, like this is happening right now. And I, also just walking with the family, like sometimes it's right when it felt like he couldn't be in his house cause he was wandering. So we talked about putting him in the nursing home or a memory center and that felt right at the time. And then it didn't feel right. It felt like he was locked up in the thing and he didn't like that. And it made him more agitated. And so, and I think the... We eventually, Kimberly and we did hospice I think at the end.

[00:17:12] Ms. Hamilton Ross: Well, yeah, at home, hospice at home, yeah, VITAS was at home.

[00:17:16] Dr. Oyler: Yeah. Yeah. And I think that also is a hard decision about when is that right? Like, they're doing okay. They have really great family support and they had kind of set everything up at home. What is hospice going to add? Are they going to be helpful? When are we ready like mentally to decide that that's, you know, the right decision for their family? So to me, it's just like talking about it every time and like sensing where the family is, guiding them through it. And I think, you know, knowing the details of what is truly available in those hospice situations, what are you going to have to provide? Because you know, their family did a lot of work, you know, hospice is helpful with expectations, but still the family's providing 95 percent of the support. And that I think sometimes is misunderstood that the hospice is going to fix everything. And so giving people a realistic perspective of like, what's it going to be like?

[00:18:08] Dr. Cifu: I think that's absolutely true. What I've learned both in practice and unfortunately, personally, is that with everything hospice can offer, whether in the hospital or at home, and how wonderful it is... Right. It's still a difficult process and it's still a lot for, you know, the family, the spouse, whatever to carry. You know, so it's almost, how are you dealing with this? We can add a little bit, but we can't change the world. Yeah.

So, Kimberly, you may have answered this already, but it's something that I think about all the time and I ask people all the time because I love getting people's views about it. So I think often the experience of how people close to us interact with medicine, especially during stressful periods, right? Whether it's when they're like terribly sick or you know, whether they're going through the end of their life and that transition, affect our own kind of relationship with medicine going forward, right? And I can only imagine, you know, that experience of seeing a loved one delirious in the hospital is like awful, right?

[00:19:14] Ms. Hamilton Ross: It is.

[00:19:15] Dr. Cifu: Has that made you think differently about, you know, your relationship with healthcare or what you want for your future? And don't get too personal if you don't want to. As I asked that question, I was like, maybe this is digging a bit too much.

[00:19:29] Ms. Hamilton Ross: My relationship with healthcare, again, I keep going back to Dr. Oyler and she makes me feel so comfortable and talking to her about what's going on with me. So I'm not jaded or anything like that because I've been in healthcare working as a speech pathologist. I understand healthcare. I also know that you have to advocate for yourself, you know, it's not all the doctor. And there are times when I've researched it online and I've brought it to her. And I know she wants to say, "I don't know why she thinks she's the doctor here," but you know, years ago, back in 1984, when I had my first case of shingles and I went to the doctor and he said, "The best patient is the one who can advocate for themselves." You can't go in and just say, "Oh, I heard blah, blah." You have to be very specific with whatever your needs are. So I'm comfortable with healthcare. And a lot of it has to do with Dr. Oyler. I don't know if it were any other doctor, how I would feel about it.

[00:20:36] Dr. Cifu: Well, because Dr. Oyler was once my student and then my resident, I got to take credit for this.

[00:20:41] Ms. Hamilton Ross: Okay. Well, thank you too. You did a good job.

[00:20:46] Dr. Cifu: Julie, what do you think about that? Sort of thinking forward. We're in a different... In a little bit of a different position, right? Because not only do we have our own experience, but man, you know, we see a lot, both inpatient and outpatient. Do you think your view of like, what's ahead for you has kind of changed as you've learned more and seen more?

[00:21:08] Dr. Oyler: I think so. I think, you know, we as physicians feel like we have the knowledge behind us, but the knowledge is not always everything. You know, the knowledge doesn't have the sadness of like, "I'm losing this person or this person's slipping away from me." Then the knowledge doesn't have the practicalities of like, "How I'm going to manage this? My life, plus, you know, taking care of family?"

And I think, you know, and I think also just... It has also reminded me just to find the joy. You know, we have talked about this before. I've shown you my little red book, my like... I have a little... I take notes about patients loved and lost so that they like, you know... And I just think about that as like, you know, what did that patient give to me? What did I give to them? And how have I grown as a physician by like helping, you know, her dad and also her mom, who was like such an amazing wife, supportive of, you know, her husband as he went through dementia and then, you know, died within a week of each other. And that kind of love is just, you know, you get such a window into people's lives. And so it helps me, I think, in my own relationships, value things differently as I'm moving forward.

[00:22:21] Dr. Cifu: Sure. Kimberly, I was going to wrap up, but anything else that you've thought about that you just want to say here?

[00:22:27] Ms. Hamilton Ross: I don't know. What else do you want to know? I could go on and on.

[00:22:33] Dr. Cifu: I feel like I could get a tutorial on speech pathology. I won't go there.

So thanks very much for joining us for this episode of The Clinical Excellence Podcast. We're sponsored by the Bucksbaum Institute for Clinical Excellence at the University of Chicago. Please feel free to reach out to us with your thoughts and ideas on the Bucksbaum Institute website or Twitter page.

And Julie and Kimberly, thank you again for joining me today and taking the time for this.

[00:22:59] Ms. Hamilton Ross: Thank you.

[00:23:00] Dr. Oyler: Thank you.

[00:23:01] Dr. Cifu: The music for The Clinical Excellence Podcast is courtesy of Dr. Maylyn Martinez.