Patients Want to be Seen and Heard

Podcast Transcript

Steph Bayer: Welcome to another episode of Studies in Empathy, a Cleveland Clinic podcast exploring empathy and patient experience. I'm your host, Steph Bayer, senior director of the Office of Patient Experience here at the Cleveland Clinic in Cleveland, Ohio, and I'm very pleased to have with me today Kate Watson. Kate, welcome to Studies in Empathy.

Kate Watson: Thanks so much for having me, Steph.

Steph Bayer: It's my pleasure. Kate's a longtime patient at the Cleveland Clinic who is diagnosed with metastatic breast cancer at just 35 and receives treatment here every three weeks. Kate sits on the national board at METAvivor. She and her husband Scott have two daughters, Audrey and Olivia. The family participates in VeloSano, Cleveland Clinic's fundraiser for lifesaving cancer research. Kate's also a friend. So Kate, we're excited to have you here today.

Kate Watson: Thank you.

Steph Bayer: What I'm excited about is we've been doing Studies in Empathy for a few years and we ask a lot of experts what it means to be empathetic and to focus on the patient experience, and embarrassingly, we haven't had a patient come in yet. So you're the first patient.

Kate Watson: Oh, thank you. I'm honored.

Steph Bayer: Yeah, no pressure.

Kate Watson: Yeah, exactly.

Steph Bayer: But this is really what we should be asking our patients are how we're doing and what's going on, so that's really where we'll talk today. And if it's okay with you, we'll just start at the beginning.

Kate Watson: Sure.

Steph Bayer: Can you tell us a little bit about your story, how you were diagnosed, what your treatment's been like, and most importantly, how you're doing today?

Kate Watson: Sure. So I was diagnosed in 2016 with stage four metastatic breast cancer right from the start. It had spread beyond my breast. I had two tumors in my breast and it spread to my spine, my femur, and my pelvis at that point. I have no family history of breast cancer, and I actually was only one month out from suffering a miscarriage. I lost my third daughter at 18 weeks. So it really felt like a whirlwind of tragedy looking back in the moment, and sometimes it is hard to believe that actually is my reality. Fast forward almost seven years, and as you mentioned, I still receive treatment every three weeks, but that treatment started with the traditional chemotherapy, six cycles of it where you lose your hair and you look like a cancer patient. It knocked all the cancer back, so I'm happy to report that I'm no evidence of active disease. I'm still on my first line of treatment, and things are going really well for me cancer-wise.

My girls were four and two at the time I was diagnosed, and now they're 11 and almost nine, so I've been able to witness milestones that at the time I just wasn't sure that I was going to be here for. So I'm so grateful for the treatment that I've received here at the Cleveland Clinic, and for research that has the medications that have really been effective in treating my type of metastatic breast cancer, which is HER2-positive hormone positive breast cancer.

Steph Bayer: I'm glad you're doing so well, but one can only imagine the feelings you experienced when you were first diagnosed. Can you talk to us a little bit about the support you received from your healthcare team?

Kate Watson: Yeah, so as I mentioned, I was unofficially diagnosed while I was experiencing a miscarriage. They knew from some blood work that things were off and they weren't sure if it was coming from the baby or if it was coming from me. So I did live for about a month with complete uncertainty, trying to wrap my head around the fact that we had just lost the baby and that there could potentially be something really wrong with me. So I went straight from the care of my OB/GYN to the Women's Breast Health Center here at main campus and had my mammogram, and they could only see the one tumor in my breast based on the mammogram. So when I first met with oncology, I thought that I was stage one, stage two, I would have surgery, I would have a year of treatment, and I would be on my way.

Well, they ordered some additional testing, MRIs, full body scans, and that's when we realized the extent of the disease, and that's when it became real that this was going to be something that I'd be dealing with for the rest of my, hopefully, very long life. And from day one, every encounter that I had with a new care team as a patient, they just reassured me that I was part of the team, that I was in it with them, and that if any point side effects were too much, that that was just as important to them as the treatment being effective. And I think that that is so important for physicians to keep in the back of their mind is that quality of life sometimes can be more important than quantity of life, especially like me having two young kids. I wanted to make sure that I was going to be around and active for them.

And so learning to speak up to say what I was feeling was difficult for me, because as a mom and as a young woman, I feel like I probably took care of myself last. And so learning to navigate that relationship with my care team and figure out when to speak up, when to say things is so important as a patient.

Steph Bayer: It really is. And I'm glad that care team took the time to include you with that language.

Kate Watson: Yes, and we definitely had a conversation from the beginning, which looking back was overwhelming at the time, but it was to the effect of, how do you want to be included? How do you want to receive information? Are you someone that really wants to get in the weeds, or do we want to keep it high level? And I have learned about myself that I'm an information junkie and I want to know the information as soon as they receive it. So to be able to access it on MyChart, my doctor knows that about me, but I know that that may not work for every patient, so it's really important as a patient to have that conversation with your care team about how you want to receive information because they're not mind readers. They don't know how you process information or how your family might want to process information. I've come across patients whose family and caregivers want to know more than the patient wants to know, and so it's a fine balance between how is that news delivered, what do you want to know?

It's a relationship, and so learning how to communicate as two people in a relationship, it's more than just the medicine behind it.

Steph Bayer: I love when you put it like that. Like in a relationship, people have different needs and they communicate differently, and that we need to think of it from an individual relationship perspective. It's so important.

Kate Watson: It is, because every doctor's different, every patient is different, and you're thrown in together into this relationship at a very chaotic time in your life, especially if you're being diagnosed with cancer. There are so many emotions to process, and you need to figure out how to do it together.

Steph Bayer: Yeah. So one of our core values, it's the value of empathy. You've been a patient here for seven years in your cancer journey, but longer than that in other care. When I say empathy to you, it's a buzzword in some ways, but what does it actually mean as a patient? And where have you seen that? It sounds like we just talked about some ways in the language, but can you talk to me about empathy as a patient?

Kate Watson: Yeah. If I had to put empathy into simple terms, I think it's being seen. I think it's your emotions being validated, whatever they are. There's no roadmap as to how to be a patient, especially when you're diagnosed with a chronic or terminal condition. Your emotions are going to be all over the place, and every person is different in the way that they process that. So it's giving the patient space to feel what they need to feel, not making them feel like they're feeling the wrong thing at the time. Some people may take things on with a much braver face than what's actually going on inside. And so I feel like in some ways the caregiver has to be an expert in treating the emotions of the person too, not just the physical ailments. And that's a tough job, I think, for them to take on. I give them a lot of credit.

I don't know that that is something I could do as a human, because they see patients all day and not everyone is a success story, and I think that that has to weigh heavily on the care team too. But it's so important for the patient to think that however I'm feeling in that moment is okay.

Steph Bayer: Yeah. So often we talk about taking care of the emotions and soft skills, and I think you just hit it when you said it's so tough. Those are hard skills.

Kate Watson: It is. And I think that you're on the caregiver side of empathy representing the clinic, but as patients, we also need to remember that the people on the other side of that room are people too, and they have emotions and they see things all day. I mean, that's no excuse for if you have a relationship with a caregiver or a provider that you feel isn't working for you, but I think to give grace in that this is a difficult emotional experience for everyone to balance that healthcare provider as a person too.

Steph Bayer: Yeah. We have seen that in the last few years play out, especially that we need to give each other more grace. With that though, let's focus on first the positive. So as a patient who has some experience here.

Kate Watson: Yeah. I just finished my 119th infusion last week, so I'm here rather frequently. And from the parking garage to the check-in desks, I interact with a lot of different people through the healthcare system. And it makes a difference how you're treated, just with a smile, just with a, how are you doing? Prime example, I'm so used to coming in for treatment, I know how it's going to work, but when you're newly diagnosed, you don't, and emotions are highest then. So just even if there's an unexpected wait, have that explained to the patient. Sometimes you look around and you think, why aren't things moving faster? But then you have to realize that pharmacy gets backed up. There are new patients having chemo for the first time, and so sometimes nurses have to devote a little bit more of their attention to them if there's complications. But just to have your nurses and your healthcare providers let you know that that's a normal part of the experience, and to let you know that your feelings are valid for being frustrated if you have to wait helps.

Steph Bayer: Communication is why I have a job here. It is all about what the patient experiences, and it can be mitigated and explained and the suffering alleviated by just communicating, and you're exactly pointing out why.

Kate Watson: Yes, just to know what's going on and why this is happening and that your experience matters just as much as the person in the next room, that people are not trying to torture you by making you wait longer, that there's a human component to the work that they do, and there are limitations on how fast they can get things to you and how your care is that day.

Steph Bayer: And in times of anxiety and stress, when humans don't have information, you tend to fill that void with worst case scenarios.

Kate Watson: Absolutely. And not even just for the patient. In the beginning when I had to bring my husband or my mom, it seems like the caregiver, the support person that you might bring with you, can get equally as frustrated as the patient because, to you, your experience is all that matters in that moment. But it is a whole healthcare system and there are other patients and needs to be juggled.

Steph Bayer: What do you find encouraging about the state of healthcare?

Kate Watson: I would say how much I have noticed over the past seven years now that patients are getting more involved. In addition to the metastatic breast cancer advocacy work that I do, I also sit on the healthcare partners team for Taussig, which has been a wonderful experience in that they bring patients and support people, caregivers of patients, you don't necessarily have to be a patient to be involved, and they gather their experiences. And when there are new decisions being made or focus groups, they involve the patients. And I think that the patient should be involved in every step of the process of anything new that you're looking to update or change, because at the end of the day, we are the ones that have the experience with how your services work. And so it does excite me to see that researchers are using more patient advocates in their studies. And when you're designing new spaces in the building, you're thinking about what treatment chair works best? What kind of spaces do we need? And just making sure that the patient is involved in every touchpoint of new studies.

Steph Bayer: I love that you're involved in that. And thank you, because I know that's a time commitment. For people that are listening that might not be part of the Cleveland Clinic or healthcare partners, it's a volunteer based program where instead of having a committee meet and we present to the committee what we want the committee to know, we're actually asking the patients to join us and co-creating our processes. So it could be when we design a building, we get patient input. And I know with Taussig, for instance, our patient partners gave us information about where smells come into the chemo rooms, and that was so eye opening for me that I just hadn't thought of that because I'm not in the chair in the same way.

Kate Watson: Yeah, there's so many things that go into it that as a provider you may not realize are part of the experience, but when you're on the flip side of it in the chair, things that could be improved. And also I think it's important as patients to speak up and say where things are working well. I think so often we're quick to give the bad reviews and we're quick to call in to your office and say, I had a horrible experience with this physician. Well, I think that it's important for them to hear where they're doing the right things, where you felt seen, where you felt like this really added value to your experience.

Steph Bayer: I love that. And it is encouraging to see that we're making space for patient voices, and that patients are wanting to get involved in both positive and the opportunity, which leads me to the next part of the question. Where do you see the most opportunities in healthcare today?

Kate Watson: I would say when I was first in treatment, the social work program was amazing, and I think that the pandemic hampered their ability to come in and check on you as much as new patients need to be checked on. I think the social services that the Cleveland Clinic offer are amazing, and perhaps getting more information out to what is available for patients, because you don't know what you don't know. And to be able to meet with someone that can provide you information on those things, not only when you need it. That's great to identify the need when you immediately need it, but to give you information so that you are empowered down the road, because you never know how your needs are going to change. My first year of treatment was vastly different than how I'm experiencing treatment in year seven. My emotional needs were different. My side effects were different.

And so just to know exactly who I can reach out all those kind of concerns, to make sure that those needs are being met for not only myself, but for my family. They should check in on how are my kids? How are my husband? How's my mom doing?

Steph Bayer: I think it's a great point. That wraparound care can get forgotten as we're focused on just what the patient needs today, and I love the idea of anticipating, because we have experience. We know what other patients go through. We've got patient partners telling us things. And I think that putting the onus on the patient to find those services is detrimental to their health, because you just feel like this is such a big organization and you want to be treated like a person, not a patient. You just mentioned your husband and kids. How are they doing today?

Kate Watson: They're doing great now. My girls have grown up always knowing that treatment schedules were in our family and in our life, and I hope that that makes them more little empathetic creatures. As you mentioned, we're all involved in VeloSano, and so I think that they're starting to understand what it means to speak up. I find them less afraid when we go to the pediatrician and it's time to get shots and to say, if they have a sore throat, what they're feeling. I feel like I'm training little patient advocates in them. And I wish that everybody would realize that before facing a diagnosis like I have. I think it's so important to be your own advocate.

Steph Bayer: As someone who knows your kids and your husband, you have a very empathetic, beautiful family.

Kate Watson: Thank you.

Steph Bayer: And they're really joyful. I love hanging out with you guys.

Kate Watson: Thank you.

Steph Bayer: Tell us about your patient advocacy work with METAvivor. It's an organization for men and women living with stage four metastatic breast cancer, right?

Kate Watson: Yes. So METAvivor is an organization that I found about a year after I was diagnosed, and 100 percent of every dollar raised focuses on metastatic breast cancer research. So it's very similar to the mission of VeloSano in that all funds go to cancer research, because I think that is so important. Patient support services are great and needed, but I would not be here if it weren't for the medications that were discovered through metastatic breast cancer research dollars. And so METAvivor raises funds, and I sit on the executive board. I have now for almost two years. They were founded in 2009 by four patients, actually, sadly only one of which is still with us. And the focus has always been on doing more for stage four.

Steph Bayer: Talk to me about that. In your opinion, why is that component of it needed, or how is that different than other great organizations that are out there too?

Kate Watson: Well, there are a lot of breast cancer organizations out there that I'm sure everybody's familiar with, the big names. But sadly, only about 7 percent of all dollars raised go to metastatic breast cancer research. And that's the only form of breast cancer that you can die from. If you're diagnosed with stage one, you're still okay. You're not going to die from it. And so more funding just really needs to be directed to the only fatal form of breast cancer, in my opinion. I've lost too many friends through support groups that I've met, connected with METAvivor, and I don't want to see it happen anymore. I feel like I'm a prime example that if you put research dollars towards metastatic breast cancer, you can find the effective, well tolerated treatments that are going to extend lives.

Steph Bayer: What can we do to help these patients this stage four, what more can we do?

Kate Watson: I would love to see, across all cancer disease types, more of a collaboration between organizations like METAvivor and the Clinic. I would love for anybody that is interested in finding more advocacy opportunities. And just to back up, I think you hear the word advocacy and you think that it's a lot of work. It simply comes down to sharing your story, letting people know what you're going through. Because the more you know, the more you know. I knew nothing about metastatic breast cancer before I was diagnosed, and so I think organizations like the Clinic would do a great service to patients if they helped to get the word out on what kind of other organizations are out there. I know it's probably viewed as competing against VeloSano, but research dollars are research dollars.

And it also helps them find, I think, a sense of community, because people can empathize and know what you're going through and have some sort of understanding of what your experience is, but the people who know the most about it are the people that are living through it, and it's so important for patients to connect with other people that are in their same position.

Steph Bayer: I think that's a great message, helping build connections.

Kate Watson: Yeah, for sure.

Steph Bayer: So as we're wrapping up here, what did I not talk about today, or what message would you like to just make sure that we highlight again?

Kate Watson: I would say, as patients, don't ever feel like you can't speak up. No concern is too small. And as I touched on before, this is a relationship between you and your caregiver. If you feel like it's not a good fit, there is no shame in shopping elsewhere. There are plenty of other physicians, even within the Cleveland Clinic, that you might mesh with better. It's like dating. You may not land with the right care team that first time, and that's okay, but you need to speak up and say what's working for you and make sure that your needs are known, because you have to be your own advocate.

Steph Bayer: And I'm glad that our relationship with you is working right now and that you are feeling the empathy, because we need you around for a long time, Kate.

Kate Watson: Yes, thank you. That's my plan.

Steph Bayer: Thank you for coming in today.

Kate Watson: Thanks so much for having me.

Steph Bayer: This concludes the Studies in Empathy Podcast. You can find additional podcast episodes on our website, my.clevelandclinic.org/podcast. Subscribe to the Studies in Empathy Podcast on iTunes, Google Play, SoundCloud, Stitcher, or wherever you get your podcasts. Thank you for listening. Join us again soon.