When the New Yorker arrives in my mailbox each week, I flip to the contents and scan for my favorite authors. This week, I was doubly rewarded: an article by Dr. Jerome Groopman on my favorite topic -- prematurity.
There is a section in Groopman's outstanding article about newborn medicine, where he gets to the heart of the ambivalence physicians feel about telling patients what they should do. Groopman quotes Stella Kourembanas, chief of newborn medicine at Harvard, on that most awful decision: when to stop trying to save the life of a severely-preterm newborn because success is unlikely and severe long-term disability is nearly assured.
"I'm very much in favor of what the parents want ... " Kourembanas says, "... Because I'll take care of the baby in the NICU, but then I'm gone." But she balances the parents' choice against the weight of decision-making. "I make the recommendation ... I feel it's far more cruel to say to the parents, 'You have x percent of a chance of this complication,' and then say, 'I'll do whatever you want to do. Now, what do you want to do?'" Kourembanas' point is that it's not fair to force patients to make decisions in a vacuum.
Don't get me wrong, I'm not advocating for a return to the bad old days of medical paternalism, when physicians decided what they thought was best and just did it. As physicians, we must empower patients (or parents, when the patient is a baby) to make decisions, and it is absolutely essential for us to educate parents about their child's illness, the options for treatment and the prognosis. And education takes time, something that is too often too scarce, particularly in places like the Newborn Intensive Care Unit (or Labor and Delivery, where I work).
But I think we have a responsibility to help parents make decisions, not from a poo-poo platter of options, but from a menu where the physician has sketched out a recommended treatment plan, explained why the plan is the best choice, and also listed alternatives.
When the parent agrees with the plan -- even if it is a plan to withdraw life support -- they are confident they received their doctor's recommendation, alongside the rationale that was carefully explained. Should they disagree with the plan, they feel well-informed, and then their doctor can support their decision whole-heartedly, knowing that they are respecting their patient's autonomy over a good-faith recommendation.
How do you think doctors should approach this situation?
Follow Adam Wolfberg, M.D. on Twitter: www.twitter.com/AdamWolfberg