Three years ago, Zoë Keating lost her husband to an aggressive form of non-smoker lung cancer.
At the time, she lived in a rural area outside of Santa Rosa, California, and was independently insured. She had to balance her career as a composer and cellist and her dual roles as mother to a young child and spouse to the patient. Jeff Rusch, her husband, needed positive reinforcement to keep up the energy for his fight. Yet privately, she knew the prognosis was dire and unavoidable. Keating educated herself about treatments, searched for specialists, and trekked from one doctor or hospital to another to gather medical records. Of course, she’s not the only caregiver who’s faced similar challenges. But Keating set herself apart, by blogging about her experience with such detail and passion that her story spread. She would eventually give a TEDMED talk, appear on a healthcare panel with President Barack Obama and participate in Vice President Joe Biden’s “cancer moonshot” summit in 2016. When she thinks What the Future, she wonders how others might someday have a better experience than she did.
GenPop: What were some of the most difficult aspects of being a caregiver?
Zöe Keating: Finding out what providers are in a network and finding out what the costs were going to be in advance. That and data sharing—having to get all the medical cases to the specialist without having to fill out 10 pages of paperwork every office visit. In the realm of billing, trying to understand why something wasn’t covered by the insurer then trying to figure out how to fix it myself. Then [after Jeff died] I moved and the rules changed. I had to relearn a new system and transfer medical records. Also, I travel a lot and it’s not always clear if I’m covered if something happens to me in another state.
GenPop: You’ve written about how you had to drive discs of medical images between doctors.
Keating: [My husband] had cancer affecting multiple parts of his body, so there were different specialists dealing with each part of his body, and they didn’t seem to have ways to communicate with each other, so when he had an MRI it had to be read by a brain specialist at University of California, San Francisco, which was 75 miles away. And it also had to be read over at University of California, Davis, which was 90 miles in another direction. His type of cancer doubled in size every three weeks, so it was really imperative that it get read immediately.
GenPop: Caregivers play many roles. You were a spouse and a mom but also a researcher.
Keating: Over the course of my meandering through the American healthcare system on my own, I learned that there isn’t one person who’s holding all the information. If you have a serious illness it becomes crucial that somebody is looking at all the data coming in and all the information on things that are happening, and they’re looking at the big picture. That ends up being the caregiver most of the time. The fear is that if you aren’t paying attention you could miss something because you’re not a medical expert.
GenPop: What other roles did you play?
Keating: The caregiver as a medical information hub and expediter. You’re the person who is going to make the appointment, the person who’s going to call the doctor’s office and say, “Did you get the records?” You are the project manager and the project is to protect your loved ones.
GenPop: In the survey, a large majority of people agree the system is hard to navigate. Your follow-up question was if people would like a person, or eventually perhaps an artificial intelligence system, to help them navigate. Essentially a healthcare porter or navigator. About half said they would, which seems low to me.
Keating: Before my experience I had no idea that it could be so complicated. I couldn’t even imagine the world that we were plunged into. You don’t know what you don’t know.
GenPop: It seems like this “navigator” is an idea whose time has come, though. Especially if, as the survey suggests, it was provided by your primary doctor or a nonprofit and then covered by insurance. Your final question hints at yet another caregiver role you played — that of data collector and archivist.
Keating: I used to be an information architect before I was a full-time musician, so it was natural for me to become the information architect of my husband’s Cancer treatment. You have a patient who generates information. Where did that information go? Does anybody learn from the experience? They go through treatment. Does anybody learn from what happened to them afterward? And I fear the answer is, “No.” Part of it is because the information comes from so many different places.
GenPop: You collected information about Jeff, such as what he ate and how he felt. There was information from his various doctors. There was information being shared in virtual communities of survivors and people going through the same treatments that Jeff was. It seems if that data were gathered, the system could learn from it, especially as AIs are used more in the healthcare system.
Keating: You have an oncologist and the data of how things went during the treatment, or if the person survived or didn’t survive, or how they did on a particular medication. Does anything get tracked afterward other than death rates and what he died of? I have some doubts as to how progress happens. Does progress have to only happen inside of a medical institution like a teaching hospital with trials? Or can data be collected from the field and fed back into improving both the nature of the care and the experience of the patient?
GenPop: You had the caregiver role of storyteller — both in terms of how you inspired Jeff to keep going, and the stories you shared with others, the fans of your music and the caregiver communities you were part of.
Keating: The other elephant in the room was that there was never at any point any medical professional who would have prepared me psychologically for what was happening. I had to kind of teach myself. Each patient is different. I’d want to know everything; that’s my personality. But my husband would not. Sometimes there’s a disparity between what a doctor needs to tell a family and what the patient needs to hear. I don’t see that doctors think that they’re responsible for that. In retrospect, I could probably have used some counseling at the time.