When I was in medical school one day the dean stood up in front of my class holding a cheap, plain pen. He just stood there holding it for a minute without uttering a word. He then very slowly and deliberately said, “This, this pen is the most expensive tool you will ever hold. With this you will during your career spend hundreds of thousands of dollars.” He continued to talk to us about the importance of cost containment and recognizing what we were doing and why we were doing it, cautioning us about ordering tests, treatments, or medications without a reason.
Years later I still remember his lesson. I realize as physicians we for the most part are aware of the financial cost of what we order, but do we think about the other burdens our treatments and recommendations impose on our patients. In our electronic world, it is extremely easy for us to order an entire list of medications, treatments, and labs with the mere push of a button, with little to no thought about how our orders translate into the patient’s everyday life.
Recently, I found myself asking this question: What happens when what we order is too much?
My daughter has complex medical issues and was hospitalized on a service new to her. She has had multiple hospitalizations in her lifetime, fortunately most with an awesome team who knows her and her idiosyncrasies well. This stay, however, was unavoidable and we were out of town.
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When she was admitted we told the team her home treatment regimen and what we have done in the past when she has been sick at our usual hospital. We have followed the same treatment plan for at least the last eight years. We have tried other plans, but none have worked well or been as effective. She has had adverse reactions to a number of different medications; it has been hard to find a plan that worked and worked well.
We were told that the plan we followed at home was not the plan they used in their hospital. We were told it was not the standard of care. We mentioned she had an adverse reaction to the medicine that was the standard of care, she had developed severe respiratory distress, and this happened on more than one occasion. We were told in their facility they only provided standard of care and were unwilling to deviate. We were told we would need to choose which parts of her normal home plan we wanted them to order because “our home plan was too burdensome and too time-consuming to do in the hospital” and “our expectation was unrealistic.”
I asked the admitting team why, if she was sick enough to be in the hospital, did we have to choose, and they were abundantly clear that we would choose to only do a portion, roughly half of what we do at home when she is well. Additionally, they required me to sign a document saying I was refusing the medication that was considered by them to be the standard of care for them to consent to continue her home medications.
This raised the question of why we were expected to compromise her care, what we do at home every day, seven days a week, 365 days a year, in the hospital when she was ill. It did not make sense to me. It did not make sense to her. It made her feel like the team did not care about her, that they did not care if she got better or not. It made her question why she was even in the hospital at all if she would not be allowed to do even the minimum that she does at home.
We were, as the team dictated, forced to choose, because her normal everyday treatment burden was too much for the hospital to manage. It was not a small hospital; this was a large 1,000-bed-plus hospital.
This experience made me wonder: If our normal treatment burden was too much for a hospital with multiple people caring for my child across multiple shifts, is it reasonable to expect us to do the same every single day at home while also balancing school, work, chores, homework, errands, and all of the other tasks daily life requires? Is it reasonable to expect a child and her single parent to do what a hospital cannot? How often do we expect things of patients that are unrealistic? And when they fail, where do we place the blame? When is treatment burden too much? And who makes that decision? How often do we as physicians take a step back and really look at what we are asking our patients, their parents, and families to do? Do we recognize the impact what we are asking has on their everyday life? Should patients have to compromise care when we decide their treatment is too burdensome, even if they are thriving on that plan? Who has the right to make that choice: us, the patient, or someone else?
I don’t think many of these questions have good answers, but as our patients and our society become more complexly ill, we will deal with many more patients with complex multimorbidity and we will need to grapple with these questions. Eventually we will need to find answers. We need to as a profession start looking and start thinking about them, sooner rather than later.
Christine Marie Deeths is a family physician.
