If you ever hear your doctor say we are going to do something because there is nothing else to do, be afraid. Be very afraid.
First of all, it should be self-evident that if caring and empathy and relief of suffering count as doing something, there is always something to do for patients.
A growing problem in medicine, especially in death-denying specialities like cardiology and oncology, is that having nothing else to do translates to not having a cure, or a promise of immortality. In times past, such misthink wasn’t so hazardous. Now, however, the inability to see failing organs as the natural order has never been more scary.
Caregivers in 2014 choose from a vast array of tools to prolong death, and, in the process, destroy one’s humanity. It has become quite easy to make human beings worse. We have ventilators, dialysis machines, restraints, shocking devices (and vests), mind-altering drugs and nursing homes–where, contrary to popular speech, elderly patients rarely go to get stronger.
Caregivers in 2014 are also burdened with distorted expectations. When a 90-year-old person dies, he does not die of heart failure, kidney failure or stroke; he dies of old age. I’m not sure when this notion got lost but it is long gone.
Here is a case:
An elderly man presented with symptoms of a stroke. The good news was he recovered quickly. The bad news was what he went through. The really bad news was the endemic misthink underlying this case.
The frail but functional gentleman endured a lengthy hospital stay, which I mention because the danger of immobilizing the elderly is under-appreciated. During this long stay he underwent numerous expensive and invasive tests, all of which confirmed what was obvious from the original brain scan: he had a small stroke from age-related blood vessel disease (atherosclerosis).
Now to what almost happened. More than one of his doctors noted that the anti-clotting drug he was taking to prevent strokes had failed. Drugs should not fail. And when they do, they must be changed.
That’s when I got the call. “Is it okay to change this patient to drug X?”
“No. It is not.”
There were numerous reasons I said no. The first was that he was doing well on the “failing” medication. It was doing other important things for him. The second reason was that no drug reduces the risk of stroke or heart attack to zero. The third and main reason for not switching was a complete lack of evidence to support using the new drug for this scenario. Maybe it would be better, but we don’t know because it’s not been studied for this problem. What’s more, the proposed drug requires good kidney function to maintain balance (steady state levels). This patient, like many elderly patients, had impaired kidney function.
Perhaps you can see the issue.
Treatment was being switched solely because there was nothing else to do.
How did I deal with this situation?
I leveled with the patient. Literally. I sat down in a chair next to his bed. (I was tired after a long day, so it felt good to sit.) I began with the good news: he was okay, and he was going to be okay tomorrow, too. It was a small stroke. He was going home soon. This truthful news brought a smile, which was nice to see.
He asked about the new medication.
I explained my reasoning.
“Good, he said. I looked that drug up. It’s expensive. I could not have afforded it.”
I explained further that I could not predict the future but he was on the best therapy we had to offer.
***
This was a mild case. Nothing terrible happened. It’s not hard to imagine the trauma that could occur when nothing else to do think drives caregivers to operate or deliver chemotherapy.
There remains many challenges for healthcare. One is surely how to see the natural order of life and death. Another is to count caring and empathy and relief of suffering as doing something.
JMM
4 replies on “Because there is nothing else to do”
“Another is to count caring and empathy and relief of suffering as doing something”
Just wanted to highlight this last sentence…it is so important.
My 97 year-old grandmother survived a heart attack last spring. She was taken to a very prominent teaching hospital. The cardiologist actually suggested open heart surgery on my grandmother. Paraphrasing her response, “Why would I want to spend the rest of my life trying to recover from heart surgery, assuming I make it through the procedure?”
She passed away soon after, but my family was able to spend time with her while she was in relatively little pain and good spirits. Thank goodness for her wisdom.
I once had a resident who was being grilled about the potential side effects of one of his preferred interventions for my husband bray: “We CAN’T just do NOTHING!” Um, yeah, dude, actually we could (had we not believed ourselves to be economic hostages at the time). Doing nothing is the null hypothesis, so to speak. It is for the professional who wants to do anything else whatsoever to provide positive evidence for its net benefit – with benefit being defined solely according to the patient’s values.
John,
Nice post. You ended up having a discussion about some of what was important to your patient. I don’t know if you have had the chance to read Atul Gawande’s new book. In it he also discusses “futile” care, and having discussions with patients about things that matter a la Susan Block, from BWH and Dana Farber.
Thanks for keeping these thoughts front of mind.