I never knew Jess Jacobs, and she never knew me. Everything I know about her I have learned from her Twitter feed, her website, and articles written about her. She was the same age as me when she died recently. She was educated. She knew the health care system inside and out, as an expert in insurance and policy and as a patient. But she was more than all those things. She divides her website into three categories: the policy expert, the patient, and the person. Person. Under this section, despite the challenges she faces, she writes comments encouraging a mother whose son had a similar condition to Jess. She breaks down her encounters with the health care system as a patient with the expert of a policy wonk. She never seemed to stop thinking of the system. She never stopped helping others understand what it felt like to be a patient. An expert in health policy suffered at the hands of the system she was trying to improve.
I always thought the big problem with health care in the U.S. was poor access. But what if when you have access, all you get is a broken system? In one of Jess’ pieces, she asks more of one her physicians to help her coordinate her care. This has been an oft-quoted piece this week, but to summarize, she feels she is being punted between specialists who have not helped her, and she demands more: “By telling me that my condition is complex and stating that I should just see additional specialists, you are surrendering.”
I can empathize with her physician, who was probably doing what he or she thought best. It is difficult practicing today. However, I am moved by Jess’ call to action. Do more. Don’t surrender.
One of the biggest lessons Jess provides us is to understand how complicated the system can be. No one group can be blamed. It is not the fault of the physicians, the hospitals, the insurers, the billing departments, the pharmacy alone that led to her long wait time in the ER or difficulties getting her medicines. Rather, all of these things led to the cracks that made Jess’ experience with the health care system so frustrating.
There are so many moments in my day where I don’t understand why things have to be so hard. Why do I have click on some many tasks each day? Why is the co-pay for my patient’s insulin so expensive? Why does it take so long for my patients to see a specialist? Why won’t my patient show up for their follow-up appointments?
The challenges are endless and can be frustrating, but I am moved by Jess’ experience to do more, to strive to be a better doctor, and to advocate and shape a better system. Health care is a mammoth industry, and it is made on the backs of patients. As the business of medicine grows, we must remember who matters most: the patient. Jess, I will be a better doctor today than I was yesterday because of what you showed me with your writings. You should not have suffered as you did. Thank you for what you taught me.
Fatima Z. Syed is an internal medicine physician.
Image credit: Shutterstock.com
