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On April 4, my 73-year-old mother had back surgery. It was a difficult and lengthy procedure and, unfortunately, she experienced a series of post-operative complications. She remained in the hospital for 12 days, and for several of those days things looked very serious. For the first time since I started doing health system transformation policy work, I had an opportunity to experience the acute care side of our health system not merely as a policy advocate, but as a worried family member.

There was a lot about my mom’s medical care that was good. Crucially, the complicated surgery itself appears to have been successful with the focus now shifted to her recovery process. In addition, her providers were appropriately aggressive about pain control early on, and equally aggressive about transitioning my mom off of narcotics as quickly as possible, while still keeping her comfortable. I was also impressed with the hospital’s vigilance around infection control. Last but by no means least, her doctors and nurses were genuinely caring and concerned.

Nevertheless, I couldn’t help asking myself throughout her ordeal if the care my mother was receiving met the standards of patient-centered care for which we are all so strenuously advocating. The John A. Hartford Foundation recently posted a blog about patient-centered care in acute settings, and the authors’ admonition to “Think about the System” really resonates with me. The things that worried me about my mom’s care in the hospital all seemed to stem from systematized behavior that was centered around somebody’s needs, but that somebody didn’t seem to be my mother.

For example, doctors would visit my mother at 4:00 and 5:00 a.m. when neither my father nor I were there. They would awaken her, update her about her medical condition and leave. As the days unfolded, it became clear that the “system” was organized for doctors to do rounds before the day’s surgeries and clinical office hours. For them, pre-dawn visits were a convenient time. But was that the best time for my mom? Was that patient-centered care, or surgeon-centered care? The big problem with this system was that it resulted in very poor actionable communication with the patient and her supporting caregiver system – in this case, my father and me. “Drs. 4:00 and 5:00 a.m.” would awaken my mom and explain what was going on with her medically. At no point did my mother ever remember a single thing they ever told her. How could she, given her exhaustion and the narcotics she was taking? Technically, her doctors were sharing information with her, but it was not “communication” in any meaningful sense of that word.

Not just the early-rounding doctors, but also nurses and other hospital staff frequently interrupted my mom’s sleep, and this proved to be an enormous problem throughout her hospital stay. One of the things my mother needed most was sleep, but she was never undisturbed for more than two hours at a time. This is a common complaint of folks who’ve been in the hospital, and providers acknowledge it’s a problem. My mom’s nurses felt badly about this, and even agreed that it worsened her complications. But it was also clear from the helpless looks on their faces that they couldn’t imagine things any other way. Is the patient at the center of a system that deprives sick people of sleep for days at a time? Is there really no other way to organize a hospital? 

Finally, I worried about the lack of continuity in my mom’s nursing care. Never was a nurse assigned to my mom for more than two days in a row. Just as one expert and caring nurse would get to know my mom’s medical situation, that nurse would disappear. I would see those nurses again, but they were always assigned to other patients. When I asked one of them about it, I got the same helpless look I got regarding sleep disruptions. Continuity would be impossible to ensure all of the time for every patient, but it seems like prioritizing continuity for patients having an extended stay would help both nurses and patients. Was this approach to patient assignment serving some administrative or fiscal function? It certainly wasn’t serving my mom’s best interests.

Our health system is in the midst of a significant transformation, and certainly not just within hospitals. This transformation will require administrators, providers and patients to behave differently. If my experience of the last few weeks is at all typical, it will also require that we look at the ways in which we structure systems and re-think how health care institutions organize themselves. Consumer engagement will be critical to redesigning these systems in ways that put the patient at the center of care. 

P.S. My mom was transferred to a rehab facility on April 16, and she is working hard to regain her mobility and recover from this experience. Your good wishes are most appreciated!