I don’t recall exactly what prompted it, but I wrote this essay a few years ago while still in training. The anonymized patient was “Mr X” in the original version, but for ease of reading, let’s call him “Bob”:
Bob was, a short time ago, a relatively healthy, functional, 80-year-old veteran. Our paths crossed in a VA Community Living Center after his month-long stay in the hospital for an aortic valve replacement. Now severely debilitated and delirious most of the time, Bob had a moment of clarity on rounds one morning -- "I never should have let them do that surgery."
One month prior, this gentleman had been driving, golfing and managing all of his daily activities independently. He was slightly bothered by shortness of breath with exertion beyond walking short distances but otherwise felt well. He was on two blood pressure medications and a few supplements, but with a good cognitive baseline and adequate functional status, he didn’t think he needed much from the healthcare system. That all changed after he casually mentioned the shortness of breath to his primary care doctor.
The subsequent workup was sensible and successful in revealing severe aortic stenosis. His providers ordered no lavish, overpriced new studies of questionable value and offered no unproven therapies. When he was referred to a cardiothoracic surgeon for further evaluation, he met evidence-based guidelines for valve replacement. He heard all the major risks and benefits of surgery and ultimately agreed that this was the best course. Now, just over a month later, he had serious doubts.
"No one told me I could end up like this," Bob lamented. While it’s true that no one would have expected his new-onset seizure disorder, hypertensive emergency, and persistent delirium, Bob felt that he had been, perhaps unwittingly, guided toward valve replacement across a series of clinicians. Surgery may have been the "right" answer for this symptomatic man with the right measurements on echocardiogram, but perhaps we overlooked the fragile octogenarian with so much to lose.
Bob's case was not fraught with unnecessary testing or overdiagnosis, yet we still managed to harm him with what seemed like proper medical care. In my last days on service, he was still unable to transfer from the bed to the chair, and, partly as a result of his poor mobility, he developed ileus and vomiting. He spent most of his day somnolent and disoriented, asking only to go home, even as his wife started having discussions about transitioning him to a long-term care facility. His shortness of breath, which had set this entire sequence in motion, was subjectively worse.
For me, Bob poignantly illustrated the importance of patient-centered decision making. Having been steered through this process with the best of intentions, he reflected on the fact that his breathing had never really interfered with his daily activities. He was aware of the risk of sudden cardiac death from his stenotic valve but thought this might actually be preferable to his post-operative condition. We, the healthcare providers, set out to relieve a symptom that our patient did not find bothersome in order to preserve life, but is this always the greatest good?
Perhaps, given an exhaustive list of options and potential outcomes, Bob still would have made the same decision, but we need to make sure the question is phrased correctly. "How do you want to address this problem?" assumes that our patients place the same value on the problem that we do. Instead, we need to take a step back and ask what is important to them.