Yesterday I led a case conference regarding ambiguous care for a complex patient. It was with regards a patient with shoulder pain with a small labrum tear, multiple comorbidities, severe illness anxiety who was maxed out on medical therapy, pain refractory to physical therapy and other conservative interventions. I hesitated very much on referring her to a surgeon because I knew she would likely get a surgery of questionable benefit with possibly worse outcomes. There is gross incentive for the surgeon to still perform surgery and it’s hard to refuse a patient when they likely will just go find a surgeon who will do it. I know that was the pathway and that is what happened. And then she got worse.
I don’t think we think often enough about the ambiguity in health care, probably largely from social pressures with expectations to have answers and be perfect. One of the things that was mentioned was the spectrum of testing for everything and missing nothing and testing for few things and missing some things. I mentioned this to an intensivist and he related it to the aggressiveness of care sometimes in the ICU. You can withdraw care from everyone who is seeming like they are going down a poor path or you could continue full force interventions all the way up until death is obvious.
What this is getting at is this idea often tossed around that we should test if we can and we should intervene if we can. People think getting an MRI is benign and if they had the option most would likely want to get an MRI of their whole bodies to find any possible disease. The problem with this is that we often find things that look suspicious but will never be problematic and have no way of knowing until we biopsy them or resect them. This is largely why most of us in healthcare are reluctant to pursue tests that don’t have clear purpose. Patients don’t often understand this ambiguity however so therein comes some need for paternalism to protect patients from themselves. Patients want the most educated care, the most testing, the most interventions and while we as healthcare professionals are sitting there desperately wishing they would back off and accept fate, they continue pushing.
In the ICU we often will do full force care on patients who are extremely ill and more often than not it is futile. But sometimes, every now and then, a patient pulls through and we’re terrified of how many patients we have backed off care for who may have made it out of similar circumstances. That is a terrifying prospect for a physician and very similar to the fear invoked by a test not ordered that would’ve revealed a cancer that could’ve been treated. This is horrifying at my stage of my career. I desperately want things to be more black and white but the ambiguity of medicine is what makes it so academically intriguing. If there were clear answers, algorithms and pathways would takes our jobs.
Part of me wonders what good we’re actually doing. Repeating biopsy after biopsy after biopsy on a somewhat suspicious cervical lesion, following year after year after year, all while the patient is dreading coming to see us, wondering which time they’ll find out they have cancer or find out that everything is fine and all the probing was for nothing. Most patients it seems want answers; that at least seems fairly universal. And a lot of doctors will justify that when they go down these abysmal pathways that are certainly causing harm.
I feel like we as medical professionals in the midst of trying to prevent disease and fix everything little problem have created this global illness anxiety and health awareness that is causing more harm than good. I worry more for the joy of life and the end of life prospects of the patient who pathologically exercises and eats a pristine diet full of the latest fad supplements and whose BMI is perfect who tries desperately their whole lives to prevent heart disease with fish oil and to stifle the effects of antioxidants with Acai than the rural Montana farmer who hasn’t seen a doc since they were a kid who comes in at 82 with a raging terminal cancer. One of those people perseverated over their health their entire lives and often I am concerned those people forgot to live. And the other lived a good life and is often content to pass.
Maybe I am too cynical. Maybe I am jaded. But after witnessing the atrocities that the health care system puts people through with aggressive management, and especially the discrepancy between the care the wealthy get for unnecessary interventions and the crumbs the less well off get, the limited support available to the young and otherwise healthy compared to the insane expenditure on people who will inevitably die soon, I understand my cynicism. It isn’t unfounded. And understanding where this introspection comes from I think is even more important. I see the suffering we invoke on a regular basis, the number of people we strip from their homes to die alone in a cold, stale hospital. I went into this job to help prevent suffering. I want to help people’s lives be a bit better. And I don’t think we’re doing as good of a job of that as we could be.
One thought on “When to hold back?”
I feel this big time Grayson. Well said and all more true than the general non medically minded population would ever guess.