What We Don't Talk About When We Don't Talk about Dying Children

Sarah Wildman writes in the New York Times about her daughter, who died at age 14.

Americans — really, Westerners — are terrified of death. We shy away from it. Death is a problem to solve, not an inevitable part of life. As the grief therapist David Kessler pointed out to me, we once visited the dead in the front parlors of private homes. Now the dead are tucked out of sight, handled by others. A bereaved family is the locus of nightmares rather than the focus of shared support. Nowhere is this more true than with the prospect of a child’s death. Death from illness is seen as aberrant, unusual, terrifying. Death from war, gun violence, abuse is lamentable, awful — separate. Healthy children and teens are largely shielded from the critically ill. Visiting the sick, let alone the dying, is associated with the aged and infirm; a charitable act, but not integrated into our ethos. Clergy members are overburdened. Death in America is a whisper, a shame, an error. Supporting a family through the end of life is delicate. For a child, it is also obscene. In pediatric cancer care, which has an understandable emphasis on cure, advances that have brought families hope can often mean survival rates are downplayed, hard conversations avoided. Death, when it comes, feels like failure. Medical schools rarely insist that students consider the prospect. If doctors aren’t comfortable broaching the subject of death with their patients, the rest of society long ago lost the ability to do so. Ian once quietly mentioned to an old friend that he feared Orli would not survive. She chastised him for giving up hope. He should not say such things. In the time leading up to losing Orli and in the aftermath, we lived on the terrible fault lines between these dynamics. To sit with a family that has experienced, or anticipates, child loss is to know it cannot be made better. And yet there are ways to better how we face it....If a child begins to die, support for both patient and family requires a delicate, coordinated effort between social workers, palliative care experts, oncologists and hospice. Families like ours need both to keep a child comfortable and to brace for worse. Such support is possible. But it takes effort, funding and, perhaps most important, the will to recognize that end-of-life care, and then, inevitably, bereavement care, is essential care in pediatrics. That’s rare. We didn’t find it....I keep coming back to something Wendy Lichtenthal, a lead author of the Lancet paper, told me: Our culture has a profound lack of “grief literacy.”...Everyone, even children, deserves the opportunity to sit with these questions at the end of life. It’s not impossible. But to do so requires us to recognize: It’s not sadness we should fear. It’s regret.