A Designer, Storyteller, and Caregiver is Transforming Healthcare Systems

Caring Conversation — Abbe Don

With 25+ years of experience in interaction and software design under her belt, Abbe Don has worked for a range of consumer and healthcare companies including Apple, Disney, Hewlett Packard, IDEO, and athenahealth. Now, this storyteller and innovator is using her personal experiences with illness and caregiving, as well as her extensive design background, to transform the healthcare system.

Rajiv: What is your caregiving experience, right now and in the past?

Abbe: My caregiving experience has been characterized by compassion and advocacy. When I was young and got sick with even just a simple cold, my grandmother and great-grandmother used the Yiddish expression: Rachmones. It translates as compassion or mercy but they would say something like “a Rachmones on you” and they would say it with a deep sense of compassion and empathy — a very genuine “oh, you poor thing.” It felt like they really understood how crummy I felt and just hearing them say that, made me feel better. That expression was often accompanied by a bowl of homemade chicken soup, and to this day, homemade chicken soup brings me back to that visceral feeling and makes me feel better. That sense of compassion was very pervasive in how I received care from the women in my family, and how I saw them provide care to others.

I learned self-advocacy through a chronic condition that resulted when I dislocated my kneecap in a bicycle accident when I was 10 years old. After that, my knee had a mind of its own. It would slide out of place, then eventually pop back in but it would get very swollen. Every six weeks or so the swelling was so bad that the doctor would drain my knee, give me a shot of Cortisone, wrap my knee in an ace bandage, and give me crutches, and tell me to stay off my knee until the swelling went down. I got to know this rhythm and over time, I wasn’t so scared when my knee would lock up and I couldn’t put weight on it. My first self-advocacy occurred at overnight camp about two years after my initial accident. I was playing a sport and my knee popped out of place. I couldn’t put any weight on it and the camp director insisted that I be taken to a local hospital in rural Wisconsin. They called my parents to ask permission to do an x-ray and various tests. I remember pleading with my parents by phone: “Don’t let them touch me. Nothing is broken and it will heal on its own. Tell them to wrap my knee, give me a pair of crutches and wait until my personal doctor is at camp for visiting day. If anything needs to be done, let him do it.” I knew my body; I knew this routine; and I trusted my orthopedist who happened to be the father of one of my camp friends.

When I was 13 years old, my knee was so unstable that it would slide out of place with simple movements, like reaching for a book in the library. Since this predated sophisticated imaging, the doctor decided I needed ‘exploratory surgery’. I ended up with a screw in my tibia to stabilize my patellar tendon which in turn stabilized my kneecap. But someone made a mistake during my long hospital stay and didn’t get me out of my hospital bed for nearly a month. When I did get up, my body was very confused. I was lightheaded and weak, and I remember when they got me up that first time, my parents weren’t there. They’d been around nearly every day that I was in the hospital, but right then, I was alone. When I tried to walk, the orderly looked at my 12 year-old self and said, “What’s wrong with you?” Even at 12, I knew that how my body was, or rather wasn’t working, was not my fault. Not getting me up was a mistake made by the hospital, and what was wrong with me was that I couldn’t walk because I hadn’t been out of bed in a month!

Recently, I was challenged to apply compassion and advocacy with my wife Eve who is a two-time breast cancer survivor. During her first round of treatment for breast cancer, Eve had a lumpectomy (surgery to remove the cancerous tissue) followed by six weeks of radiation. After three weeks of radiation, she had horrible skin burns and oozing blisters. Her skin was so sore and so sensitive that it was painful for even soft cotton fabric to touch her skin. When we met with the doctor, I asked what we could do to help Eve’s symptoms. She unconvincingly tried to reassure us that it would get better when the treatment stopped, and in the meanwhile, Eve would just need to “suck it up.” As the doctor tried to leave the exam room, I blocked the door and insisted, “You are not leaving until you tell us something we can do to alleviate Eve’s symptoms now.” The doctor paused and said, “Well, we used to give patients gel pads but they are too expensive so we stopped doing it.” Excited that there might be something we could do, I asked how we could find them and how much they cost. They were $5 for a 4” by 4” pad, sold in packs of 10 — so $50 per pack. They were available over the counter, by special order, from a local pharmacy. These made a tremendous difference in Eve’s level of comfort and got her through the remaining three weeks of radiation. The doctor was focussed on providing state-of-the-art clinical care to assure Eve’s long term health but she didn’t see the pain and discomfort Eve was in on a day-to-day basis.

Over a 10 year journey, there have been many opportunities for advocacy both in terms of clinical care and even simple logistics. When Eve was about to be discharged from the hospital after a hip replacement, the custodian came by to mop the floor. Eve was using a walker for stability and was literally putting her shoes on as the mopping began. I asked the custodian to please stop mopping the floor and to wait until we left the room. I had visions of Eve slipping and falling on the wet floor. Overtime, I became extremely vigilant and began to anticipate problems before they arose.

What is your professional background, your fields of expertise?

My professional expertise is in human-centered design and design thinking with a focus originally on interactive multimedia and consumer software design. Some of my specific skills include information design, interface design, and end-to-end customer experience design. I started out using the principles of storytelling to improve digital experiences. I especially like doing field research where I talk with people who will be using a product or service, and I try to understand their expectations, their frustrations, and their overall mental model of what they are trying to accomplish.

In the past decade, I’ve placed a special focus on the design of healthcare experiences for both consumers and professionals within the healthcare system. I have had the privilege of doing field research at small regional hospitals, large academic medical centers, specialty surgery centers, ambulatory care settings, and in people’s homes. And I’ve worked on design challenges ranging from reducing instances of ventilator associated pneumonia in ICUs, to improving workflows in the hospital pharmacy, to improving patient-centered care for people with multiple chronic conditions. The results have included new health IT software for the web and mobile devices as well as service design solutions which is the set of roles, processes, and tools that help people accomplish their work.

How have your professional skills and perspectives influenced or impacted your caregiving efforts?

As a designer, I pay careful attention to “work-arounds,” which are the things people do to make their lives work better. There was an instance when Eve was in the hospital, and we created a design-inspired work-around. Eve has lymphedema in her left arm, which means she can’t have an IV or blood pressure taken there. So even though she was wearing a color-coded bracelet that indicates to the staff to use the right side only, we made a big sign above her bed that requested the nurses to not utilize that side at all. Being proactive and creative in the healthcare-sphere was a type of self-advocacy that really originated from my professional experience.

Also due to my work, I’ve developed deep skills and habits of documenting people’s lives and experiences throughs photos and anecdotes. I do the same for my own life. So, when Eve or I have been in the hospital, we’ve brought pictures of ourselves to our room to help illustrate to the staff that there’s a real person in there! Patients don’t live in their hospital gowns; they have interests, loved ones, careers. I think taking those extra steps always helps to humanize us … it also encourages higher levels of patient-centered care.

Being deeply immersed in the healthcare field and doing field research with all the stakeholders in the healthcare system has also helped me know what questions to ask to get the best care for myself and my family. It has also helped me have empathy for healthcare professionals who are often working 12 hour shifts. One thing that I do when friends are in the hospital is to send dinner to the staff on the first night of a hospital stay. You can use any delivery service and arrange to send dinner for 10 to 12 people and send it to “staff on floor 2” for example and sign it from the friends and family of your friend’s name and their room number if you know it.

How have your caregiving experiences impacted your professional efforts?

During Eve’s cancer experience, she was asked to participate in various clinical trials at the UCSF Medical Center. In 2001, when we were early in this journey, we agreed to participate in a trial that focussed on software tool for decision making. The tool asked the patient questions to assess their risk tolerance, their goals, and created a profile. Then it took data about Eve’s specific clinical situation and spit out a set of options that were intended to help her make a treatment decision. It was kind of a big “if-then” decision tree. During the trial, I had an ‘aha’ moment. The intention of the tool was extremely patient-centered and there was a person who helped gather all the information and helped us understand the output, and this role evolved into the idea of a patient navigator for cancer. But the information design and the way the output of the tool was presented was really difficult to understand. So I thought: I bet I could use what I’ve been doing for the past 20 years and apply it to healthcare. It wasn’t until 2008 that I had an opportunity to really get involved with design for healthcare, but since then, it’s been my main focus. That shift was very conscious, and very specific to my exposure to caregiving.

A lot of what I’m trying to do is connect fragments of the healthcare system with thoughtful, relationship-enabling design. I try to help professionals in the healthcare system see that that their patients are people and not just a collection of symptoms in need of a treatment plan. For instance, during one of my field research studies about people living with multiple chronic conditions, I met a patient who had diabetes. And he loved to travel. And he was incredibly frustrated that his treatment plan made it very hard for him to travel. And his doctor was frustrated that he didn’t follow his treatment plan so it led to the design opportunity: how might we integrate people’s passions with their treatment plan?

At the Stanford MedicineX conference in 2017, with Eve’s willing participation, I was able to use her experience to teach a workshop on “patient journey maps” which are a useful tool to help healthcare professionals see opportunities to improve the patient experience. We used photos and anecdotes from our experience to map out all the touch points in the journey from initial diagnosis through survivorship. One thing that became clear is that most of the time the “in the moment” episodic clinical care is excellent. It’s all the “in between” moments where patients struggle and often the heathcare professionals don’t see that–they only see their one moment in this overall journey.

All my experiences caring for Eve and my experiences with my own health issues have given me exposure to a wide variety of healthcare settings. It has increased my awareness and my empathy and has helped me see things or listen for things when I do field research that I might not have known to even pay attention to.

What one piece of advice would you give someone who found themselves in similar caregiving situations?

Learn the terrain you’re about to navigate. Listen like crazy. Try to learn the language in which you’ll be immersed. Barbara Ehrenreich’s essay “Welcome to Cancerland” does a great job of unpacking that idea.

Another important thing to realize during this process is that healing is not linear. There’s a myth, I think, that “every day will be a little bit better.” But that’s rarely true. Some days are one step forward, two backwards, one to the side. And that’s normal. Recognize it, embrace it. There is no constant upward curve, and both getting better and caregiving are tests of patience. Caregiving feels more like a marathon than a sprint so there’s no value in trying to be a superhero — there’s no one big dramatic act of caregiving — it’s a set of small acts over a long period of time.

 

Interviewed: 17 September 2018, by Rajiv Mehta; edited by Julia Rubano

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