When I was a resident working in the intensive care unit (the ICU) at the University of Iowa, one of my responsibilities was to communicate with the family members of my patients. However, an intensive care unit, as its name suggests, is an intensely busy place, and I often observed among my colleagues a tendency to think about communicating with families as the last thing on their list of things to do. And though I too often found myself making it the last task of my day, I tried to make it a consistent one, knowing, as I did, that not knowing is perhaps even more anxiety producing than knowing that something is bad.
But I found the other important reason to communicate with family members at regular intervals was that it engendered relationship building. As my ICU patients were more often unconscious than not, their families were the ones we had to call upon to make decisions regarding certain aspects of their care. Sometimes those decisions were horribly difficult and we needed family members to trust us in order to feel comfortable that the options we presented were in fact the only ones available. Because if they didn’t trust us, they often wouldn’t decide anything at all. The goal of care would then often become unclear, as would therefore the goals of any of our subsequent decisions. Were we to press on fully with the intent to cure, or was our goal now only to comfort?
But what I noticed when presenting a family with the facts of their loved one’s case—facts that led us to believe it no longer made sense, from a medical perspective, to continue a full court press for cure—was that the more they trusted me the less they were able to decide how to proceed. It wasn’t because they didn’t believe the situation was as grave as I outlined; it was because they did and they simply didn’t want to be the ones deciding to withdraw aggressive care.
To actively participate in someone’s death just seems to most of us more morally repugnant—and to produce a far more burdensome sense of responsibility for the outcome—than passively allowing it to happen on its own, despite the fact that the end result is the same. As difficult a time as I witnessed families having with accepting the imminent demise of a loved one, it paled in comparison to the anguish that struggling with the decision to play an active role in the process engendered. (Many others have since observed the same thing.)
And then I had a mentor give me some advice that I at first found surprising, but that after I decided to try I found to be spot on: “Families don’t want to decide to discontinue life support for their loved ones,” he said, “so don’t let them. Take that burden on yourself. Make it a medical decision.” The truth is that by the time we in the medical field want to discuss withdrawing care at all, the real decision about what course to take has already been made—by the disease itself. In almost every case I can remember, if the decision to discontinue life support hadn’t been made, the patient would have died in the end anyway (and quickly). All I’d been doing in involving families in the decision-making process (in the name of preserving patient and family autonomy), I realized, was adding to family guilt.
So I changed the conversation. Rather than laying out the facts and asking families to decide whether or not to withdraw care (again, when the patients themselves were unable to make their wishes known), I would lay out the facts and say instead: “At this point, what we’re doing is no longer offering hope for a recovery but only prolonging the process of dying. So we’re going to change our goals from trying to cure to providing comfort only. I want you to understand something, though. I’m not asking you to decide to let your loved one die because that’s not your decision to make. It’s not even ours. The disease has made it for us.”
In each and every instance I uttered those words to a family, the response I received, despite my worry that I was being far too paternalistic, was nothing but grateful relief. I was careful always to obtain a family’s agreement—but from that point forward I stopped asking for their permission. And though I continue to this day to remain somewhat uncomfortable doing it, I’ve become convinced it’s what’s best for the families themselves. Rather than forcing them to live with the feeling that “they killed grandpa,” as one family member once said to me, he could now remember instead “him holding me on his lap when I was a child and reading me my favorite book. Now,” he told me, “I’m free to remember his laugh.”
Next Week: How To Know Yourself