The recent story of Alfie Evans, a British infant who died in April of a neurodegenerative disease, has reignited the international debate about how we think about medical care for children with incurable conditions. As in the similar cases of Charlie Gard and Isaiah Haastrup, a U.K. hospital turned to the court system to decide the fate of a child with an apparently incurable condition against the wishes of his parents. Much of the debate has been focused on the British medical and legal systems, and why these situations seem to keep cropping up there. After all, pediatric life-limiting conditions are no less common here in the U.S.
But I believe we need to ask a more basic question about where the enormous distress over these sorts of situations comes from. Why do these cases more than any others seem to arouse moral distress and media outrage? Why are these the stories that rise to international attention? One assumes that all parties involved wish only the best for the child. So how can multiple parties with a child’s best interest in mind disagree so violently?
My experience as a pediatric oncologist and palliative care clinician suggests that the distress stems mainly from two sources. One is the often poorly understood nature of the underlying condition: lack of certainty around diagnosis leaves the door open to lack of certainty around prognosis. This state of not-knowing generates enormous parental distress, and also often a desperate hopefulness.
While in my experience most parents, no matter how much they “get” their child’s poor prognosis, continue until the final moments to hold on to some degree of hope, families in these situations may be left hoping that a curable condition will be identified, that the medical staff has made a mistake, that a miracle drug will be discovered, that the child will simply and inexplicably get better. This inability to provide concrete information likewise often leads to staff distress, and opens the door for potential conflict with the family.
Unfortunately, even with all of our advances in medical technology there are diagnoses that may continue to elude us well into the foreseeable future.
But the second source of distress, possibly more complex, is in contrast something we can work to address. It resides in one’s own perception of suffering.
This is something I think about a lot as a palliative care clinician, a specialty that focuses on suffering in all its forms. Suffering, as distinct from pain, is subjective and individualized. As Eric Cassel writes in his now-classic article “The Nature of Suffering and the Goals of Medicine,” it is deeply personal. “People suffer from what they have lost of themselves in relation to the world of objects, events, and relationships,” he writes. Suffering involves a threat to one’s identity, with concomitant fears about what that means for the future. To get at this we must actually speak with a patient. They may describe unremitting symptoms, frustrated hopes or gnawing fears.
But what about a nonverbal child or infant? How do we determine if they are suffering? This is what is at the heart of the public debates about how to care for children with incurable illness, and much of this involves our own perception, and even projection, while observing a child. But is a child necessarily suffering just because for us, as observers, it feels like suffering to watch?
In the absence of hard evidence to the contrary, we need to rely on parents to guide us about how they identify and perceive their child’s suffering. Recognizing the interdependence of parent and child identity, the pediatrician and psychoanalyst D.W. Winnicott famously wrote “I once risked the remark ‘There is no such thing as a baby,’ meaning that if you set out to describe a baby, you will find you are describing a baby and someone. A baby cannot exist alone, but is essentially part of a relationship.” Andrew Solomon develops this idea beautifully in his book Far From the Tree, in which he writes of children with multiple severe disabilities, “It is impossible to establish in any given case in what measure … personhood is observed and in what measure imagined or projected.”
Though one might argue that parents may just be projecting their own emotions when they describe an infant as suffering or not suffering, nonetheless, we must recognize that the identity of that infant and parent are so deeply intertwined that the parental perception must be taken at face value.
I have sat at the bedside of many children with life-limiting conditions, and to this day still struggle with the healer’s mission of learning to simply be present, to bear witness. A critical part of this mission is learning to make one’s own perception of whether a child is suffering secondary to a parent’s perception. We rely on parents all the time to judge what children are feeling: to sense when an otherwise healthy child is sick, or unhappy, and then to act on that sense to remedy the situation.
True, this does not mean we turn a blind eye to potential suffering and discomfort. But unless we can show that parents are choosing a course of care for personal gain or willfully causing harm, parental perception should be the central determinant of whether a nonverbal child is suffering.
It is this well-intentioned belief that we are protecting children from suffering that generates the enormous distress and even international furor that has accompanied the story of Alfie Evans and others. This is not just about differing legal systems, but more fundamentally about the nature of suffering in children, and how we perceive, address and honor that suffering in the context of a child’s relationship with her parents.