As someone who has lived for more than thirty years with inflammatory bowel disease, twenty years post-liver transplant, and now exactly thirty days after bilateral knee replacements I feel I have earned the term complex patient. You can surely imagine that I have decades of stories from my extensive and frequent interactions with the healthcare system to provide fodder for dissection, discussion, and debate, but when I thought about how best to bring culture into focus it was not cutting edge surgical experiences or tightly orchestrated intensive care teamwork that saved my life time and again that came to mind. Instead I thought we could consider together a seemingly simple pursuit of water, specifically liters of saline, which confounded a prestigious academic medical center and ended a doctor-patient relationship.Two years ago I was experiencing a severe flare of my Crohn’s Disease. It seemed impossible for me to retain fluid and my blood pressure kept dropping so low — hovering around 80/50 — I was dizzy and spent most of my time in bed. Eventually, I went to the emergency room and got 4 liters of fluid. That didn’t last. Later that week I called my primary care doctor; someone who practices at the same academic medical center that runs the ER. I have to admit we had sparred over the course of this episode with his refusal to accept my home blood pressure readings, and my refusal to be hospitalized. After a physical exam, he insisted that I go directly to the ER and get more fluids. To me the question was not if I needed fluids, but how I would get them. The ER is an expensive, time-consuming, and for someone immunosuppressed, a risky option. I was ambulatory at this point and not as bad off as I had been Sunday in the ER, but clearly trending down. I always believe there are options and went into solution-generating mode. I peered out the window at the infusion center in the next building but was told that that was for cancer patients only. (I later learned that was not true.) I recalled how one of my specialists arranged for home IV therapy. My doctor said he could not set that up. (I later learned that the system owns a visiting nurse service easily activated with a prescription and phone call.)Frustrated by this back and forth, my doctor called his nurse insisting that she would wheel me down to the ER right then and there. I relented. The nurse wheeled me down and spoke with the triage nurse. But, the moment the nurse left, the triage nurse said that I would have to go out to the waiting area for about 45 minutes until I could be examined by an ER doctor who would then determine if I could get the saline. What had just happened?! At that point I said no. I refused to participate in dysfunction at that level – just flat out refused. I folded the wheelchair footpads and asked by husband to take me home. I drank chicken soup and Gatorade and arranged with one of my specialists for home IV therapy to start as we searched for a longer term solution with my gastroenterologist.
Part of that longer term solution was also finding a different primary care doctor, one who was willing to work in partnership with me, who trusted my husband and me, and whom I respected for both medical expertise and creative problem solving. I now have all these attributes in my relationship with the chief of internal medicine who seems able to make everything work rather seamlessly.
Another aspect of the lasting effects from this experience is how it has shaped my patient advocacy. Seeing how hard it was for even the most engaged, empowered patient AND her physician husband to push back or be heard, I have refocused my personal advocacy and that of the Global Liver Institute, the innovation platform I founded to eradicate liver diseases, towards redesigning the system to work for patients, rather than redesigning patients to work for the system.
Finding a receptive healthcare system partner, I realized, was the essential first step. After repeated efforts to volunteer suggestions for improvement, and despite positive recommendations from key faculty and staff members of the institution, the leadership of the hospital where I received care from 6 specialists refused to work with me. However, for the past eight months, after speaking at the leadership retreat for their cross-town rival, I have enjoyed a mutual mentorship with that hospital’s CEO. We meet monthly, sometimes just the two of us, other times, sharing our session with representatives from different departments. We adapt my patient observations or issues presented from patient narratives into workable models for the hospital. So far we have delved into a variety of projects from rethinking meaningful quality measures, parsing reasons for unexpectedly low patient satisfaction scores, speeding the pre-surgical testing process, adding peer mentorship and video education modules to the orthopedic pathway and coming this fall we will be convening a multi-stakeholder group to develop a patient-centered medical home for transplant recipients 5+ years post-transplant.
Given these experiences, I have come to believe that creating a culture of patient-centeredness is not the responsibility of patients alone, or of providers, but does need to start with champions at the top and becomes truly imbedded and sustainable through consistent partnership with patients, administrators, and clinicians working together on tangible relevant projects that surface and address issues from all those varied perspectives.