Surgeons are trained to conceal their emotions. And they have seen it all. But the chief surgeon I meet with to discuss my ideas regarding health literacy and medical decision making, can hardly contain his rage when he tells me of a friend who recently called him. "The guy's son was in a car accident. His spine was broken and his mid-brain severed. He was in a comma, with little chance of ever waking up, and, were he to wake up, he would be no more than a body just lying there, with no ability to think or communicate. The doctors told this guy and his estranged wife that they were preparing their son for a tracheotomy, cutting the airways open and inserting a tube so the kid could be on a respirator. You know what that means?"
I do, but he tells me anyway, and it is evident that he's told it before, trying to make sense of how the medical institution handles such cases. "Kid will be on the respirator, maybe for decades, becoming the focus of the family and causing them endless distress, not to mention costing the health system $200,000 a year. And what for?"
There's nothing to say. Because once a person is so severely wounded, they are as good as dead. Except they are not really dead. And once the doctors make the decision to cut open the person's airways and put them on a respirator, the patient will be kept alive, if living constitutes of breathing through a machine, being nourished through tubes and having other tubes clear what needs to be cleared away from the body, the mind, for all we know, lacking consciousness the while. The only way out of this tormented, quasi-existence to cease, is if the parents actively decide to ask the physicians to pull the plug.
"I want my child to be put off life support" easily translates to "I am killing my child with my own hands". At least it does in parents' minds. And this sentence is not easily uttered. Choice, in this case, poses an unbelievably heavy burden on those who need to make it, and more often than not, they avoid it, letting nature run its course, keeping their child, and themselves, in a wretched limbo.
Such choice is routinely thrust upon family members, as between 40% and 90% of the deaths in intensive care units are caused by deliberate decisions to limit life support by withholding care, withdrawing ventilation, an/or precluding resuscitation. A particularly painful is the area of decisions regarding the life of premature newborns, such that are moribund, for whom death is highly likely, and withdrawal of care shortens the life and reduces the suffering.
One might claim that making such choices, which are highly consequential and bear highly negative results, is inevitably torturous. And of course, it is. In American society, where patients are granted substantial autonomy, we take it for granted that patients, or patients' relatives, should decide.
The French, however, think otherwise. A more paternalistic model prevails there, and doctors do not shun from making harsh decisions, while providing family with less information of treatment options than is common in the U.S. This, of course, is not the only difference between French and American culture, but parents in both societies seem to perceive the impossible situation similarly. And French parents whose newborns' lives were terminated by physician decision tend to recover faster than American parents who had to actively agree to or even pursue such a procedure.
Losing a child, even a newborn, is tragic, no less. And parents grieve, regardless of whether they have a croissant or a pancake for breakfast. Researchers Simona Botti, Kristina Orfali, and Shena Iyengar followed up with such parents, on both sides of the Atlantic Ocean.
All parents grieved, but American parents expressed more distress, more agony, and appeared to be having a harder time coming to terms with their child's death, eternally linked with their own decision. Acceptance seemed to be key here.
The researchers conclude that, despite enduring the same loss as the Americans, the French parents seemed to have benefited from not being directly involved in the decision. One French mother said: "No one could do anything. I never blamed myself. I don't want to hold a grudge against anyone."
Guilt and self-blame, both of which derive from the perception of a personal causal link to a negative decision consequence, were commonly mentioned by American parents who decided to withhold life support. In the words on an American mom: "I felt I played a part in an execution. I should not have done it."
In such cases, where a patient is never going to recover, the writing is on the wall, yet the doctors may be the only ones willing to read it. And when doctors choose not to, or not to read it aloud, they condemn patients' families into either living with tormenting misery of a comatose child, as in the case of the car accident victim, or with the tormenting notion of initiating your child's execution. Neither is acceptable. As death is impending and either choice is terrible, parents may be better off not having to decide. Let us not endorse a person's right to choose over her right to live guilt free thereafter. Because we might be forsaking patients (and family) well-being, whatever's left of it under such circumstances, by turning autonomy into the Holy Grail.
