Fashioning Health Care: Humanizing the experience for breast cancer patients

A lot of things about being a breast cancer patient can feel dehumanizing, but one thing that can change is what patients are given to wear on their chest. 

In this episode, we speak with patient advocate Jennifer Schultz and Jessica Mudry, director of the Healthcare User Experience (HUE) Lab at TMU, about applying humanities thinking — like fashion design — when it comes to finding patient-centred solutions to health care challenges.

Transcript

Amanda Cupido: This is The Forefront, a Toronto Metropolitan University podcast that explores ideas for cities. I’m Amanda Cupido. 

So here’s the problem: while the technology we use to treat cancer gets better every day, patients still feel like their individual experiences are being overlooked. 

According to the Canadian Partnership Against Cancer, more than 1 in 4 cancer patients said they felt negative about the emotional support they received during treatment. Many said they felt alone and isolated, or high levels of anxiety. 

The research also shows that patients feel they are receiving the treatments they need quickly and comfortably, but basically, they just don’t feel seen. 

Jennifer Schultz: I was diagnosed with stage three lobular breast cancer in December of 2015. 

Amanda Cupido: This is Jennifer Schultz. She’s a mom, a writer, and a patient advocate.

Jennifer Schultz: I immediately had chemotherapy, then radiation, then surgery. I had a right mastectomy. I did not have an option.

Amanda Cupido: When Jennifer was going through treatment, she was shocked by how vulnerable she felt. She said her doctors were great, but she couldn’t shake this feeling that she was being seen as a body rather than a person.

Jennifer Schultz: Cancer is more of a mind game than a physical game. So, you know, you have a surgery, in my case, a mastectomy. You’re physically altered. My hair was starting to grow back from chemo, and it was curly. I didn’t look like me. My body’s altered. I don’t have a bra. All my clothing was tighter fitting. 

Amanda Cupido: But just because her body was going through all these drastic changes, didn’t mean the rest of her life fell away. It just meant she had to fit cancer treatment into her already hectic schedule. 

Jennifer Schultz: When I climbed into the chemo chair every time I brought my entire life with me. I was a single mother. My daughter was ten. My concerns about her. I wasn’t working. And then concerns about money. Everything that goes on in your life comes with you to your treatments. And when you diagnose someone with breast cancer, you drop a bomb on them and it ripples out. 

My name is Jennifer and I had breast cancer. I am not a breast cancer patient named Jennifer.

Amanda Cupido: Jennifer says there are a lot of things about being a cancer patient that can feel dehumanizing. Being poked and prodded with needles, taking a never-ending list of medications, losing your hair. Some of these are necessary evils. She acknowledges you have to do what you have to do to get better. But there was one thing. Something that could be so easily changed. And it has to do with what patients were given to wear on their chest.

Jennifer Schultz: I did not have anything immediately after surgery. I think there are now a few things. I was not aware there was anything. So I simply had a bandage. You kind of feel naked, to be honest.  

Amanda Cupido: After Jennifer’s surgery, she couldn’t wear a regular bra. The underwire would have irritated her already tender surgical scar, and the limited mobility in her arms meant she couldn’t do up the clasp on her own. The hospital didn’t have a good solution for her, or anyone else who was having a mastectomy. 

Try to put yourself in Jennifer’s shoes. You’ve been through the fear of a terrifying diagnosis and the trauma of a treatment. Finally, you get to have this life-saving surgery. And as wonderful as that is, you’re still losing a part of your body—a part that a lot of people feel is central to their identity. 

It’s not difficult to imagine how tough it might be to feel comfortable in your own skin.

Jennifer Schultz: No woman should lack that. Every woman should have the option. 

Amanda Cupido: Jennifer was far from the only breast cancer patient struggling with these issues. Her surgeon, Dr. Jory Simpson, decided it was time to make a change. But he knew he was going to need help. 

So he went to Jessica Mudry, the director of the Healthcare User Experience Lab, also known as HUE. HUE is a creative research lab that applies humanities thinking to health care issues. She’s also the chair of the School of Professional Communication at TMU. Dr. Simpson knew Jessica would be able to help answer his question: was it possible to make a comfortable, functional post-surgical bra for mastectomy patients?

Jessica Mudry: He was sending people home with ill-fitting kind of bandages and bras that didn’t accommodate for any of the post-operative things that we don’t think about, like drainage tubes and, you know, compression, like compression gauze.  

Amanda Cupido: Together, Jessica’s team and the surgeon came up with an idea. What if they held a contest where students could propose new designs for post-surgical bras? And what if those students weren’t studying medicine or science, but fashion?

Jessica Mudry: Scientists would have been much more concerned with, not so much patient comfort, but more like, you know, infection rates and this and that. But our fashion students also had the acumen to do that. 

Amanda Cupido: The contest launched in October 2021. The designs were reviewed by not just doctors, but patients.

Jessica Mudry: We had to listen to the patients, both past and present patients, and go, okay, what was the worst thing? What is the worst thing about what you were sent home with or, you know, what kind of discomfort are you feeling on, you know, at the level of like, you know, on your skin? Are you hot? Are you cold? Are you itchy? 

Amanda Cupido: The bandage that Jennifer was sent home with was tight and stiff. This new post-surgery garment would address those issues. 

And there were lots of other considerations that went into judging the designs. Some were important aspects of surgery recovery, like the ability to do up the bra in the first place. 

Here’s Jennifer again.

Jennifer Schultz: We can’t raise our arms up easily, if at all, and we definitely can’t really go behind our back. So it has to be a front closure.

Amanda Cupido: And then there was the issue of the drain—a thin rubber tube that’s put in after surgery to help fluid drain out of the body. 

Jennifer Schultz: You could have a drain for five days. You could have a drain for two weeks. It just hangs. You want somewhere where it’s somewhat secured and fits through perfectly and doesn’t pull, because I have to tell you, that is horribly painful. 

Amanda Cupido: But it wasn’t just about the practical issues of surgery. The design also had to address the same kind of factors that anyone shopping for a bra might look for.

An example, the fabric of the bra needed to be soft and breathable, and definitely not itchy.

Jennifer Schultz: Comfort is key in these moments, I think.

Amanda Cupido: And of course, along with everything else, the patients wanted the bra to look good.

Jennifer Schultz: That was something that was really considered in this project, was to create something that was pretty. Not just say, a cast or a compression sleeve, but something that had a bit of prettiness. It just makes you smile in a moment where you’re really not wanting to smile. 

Jessica Mundry: There’s absolutely no reason why we couldn’t make something both functional and beautiful so that somebody who again, is in a very vulnerable position and also in a lot of pain, couldn’t look down and go, okay, this is not this is not my finest hour, but what I’m wearing right now actually looks quite lovely. 

Amanda Cupido: The HUE lab received over a dozen applicants. And by February 2022, they had chosen a winner: a submission from an international student named Jo-Ann Harris. 

Jo-Ann’s design hit all the marks. Moisture-wicking lining, a pouch for a drainage tube, and a slot for a prosthesis. And even with all those features, it still basically looks like a normal bra. It had molded cups, adjustable straps and a trim with a zig-zag-stitch. After she was chosen as the winner, she spent a year working with doctors and patients to make the design even better. 

For Jessica, that iterative design process is just one of many ways that humanities thinking can make the health care experience better for everyone involved. 

Jessica Mundry: I think that’s really what the humanities does well, is that it allows space for conversations to happen for the subjective facts of what a patient has to say within this context become really, really important. And perhaps squishy and unquantifiable things like, you know, this feels itchier or it just feels wrong, we’re able to address that, not by counting something or measuring something, but by kind of parsing the language that’s used. 

Amanda Cupido: Jessica says by really listening to patients, they can create more opportunities for them to feel empowered to ask for what they need. Especially in their toughest moments. 

Jessica Mundry: It seems like what we’ve done is taken someone in their most vulnerable moment and told them, well, you don’t have a choice, which actually seems almost inhumane. And by affording people that choice in the future, I think it really will, going forward, demonstrate the ways in which we can honour people in their vulnerable moments and, you know, maybe rethink and apply some of the other principles that we’ve learned so that we have better patient outcomes. 

Amanda Cupido: Since she went into remission, Jennifer has been on a mission to create better outcomes for future patients. That’s why, on top of helping with the surgical bra design challenge, she’s also very involved in something called the “Patient as Teacher” program.

The program was another brainchild of Jennifer’s surgeon, Dr. Jory Simpson. He wanted to give med students the opportunity to sit down with patients outside of a clinical context and let them talk about their experiences in detail.

Jennifer Schultz: It started off with just breast cancer patients, Dr. Simpson’s patients, of course, because we were his natural pool. Now there are women and men of different cancers. But to speak of our experience: the good and the bad, and the ugly and the fabulous. 

Amanda Cupdio: The med students have a chance to have a real dialogue with current and former patients. They get into topics like how can communication be improved? And what does empathy look like in health care?

Jennifer Schultz: We ask them to give us an example of a time of really good communication or where it might have just gone off the rails. And we talk to them through our experience. Negative experiences, positive experiences. 

Amanda Cupido: For Jennifer, her experiences working with the HUE Lab and the Patient as Teacher program have made her optimistic about the future. Humanism in medicine isn’t a new idea. But it’s one that can have an incredible impact on everyone who comes in contact with the health care system. That includes patients, caregivers and the doctors themselves. 

Jennifer Schultz: Med students need to hear from us patients. It’s not ranting at them and yelling at them. It’s a dialogue. They, the new generation, can be the change. 

Amanda Cupido: Before we go, here’s Jessica one more time with her thoughts on why TMU was the perfect place to open her lab.

Jessica Mundry: Toronto Metropolitan University is a great place for me to do my work. I’ve got all kinds of creative freedom to explore new ideas within health care and within science communication and really work at an interdisciplinary and multidisciplinary level, which I think is really rare. There’s a lot of support for that at TMU. And that’s the one thing that I appreciate the most.  

Amanda Cupido: This podcast was created for alumni and friends by University Advancement at Toronto Metropolitan University. Special thanks to our guests on today’s episode: Jennifer Schultz and Jessica Mudry. This podcast was produced by me, Amanda Cupido, and Emily Morantz. Katia Galati is the editor for the show—and we’re all proud grads of TMU! 

The support team from the university includes Betty Quan, Haweya Fadal, Meredith Jordan, and Krishan Mehta. To learn more about the HUE Lab, and for more episodes of this podcast and others, visit torontomu.ca/alumni/podcasts.