Each year, early in October, a letter arrives with the return address of Massachusetts General Hospital, 55 Fruit St, Boston, Mass. I know immediately what the envelope contains and I pause and reflect for a few moments before I open it. Inside is an invitation to return to the place where my son, Nick, was treated for a deadly form of cancer when he was 14. We, as a family, also spent many days, weeks, months in this place: crying and laughing; watching fireworks magically unfurl in the dark sky over the Esplanade from windows on the 18th floor of the Ellison Building; waiting in the subterranean operating room holding areas in the warrens beneath the hospital; exploring the empty hallways late at night like the actors in “A Night at the Museum”; holding impromptu guitar jams in Nick’s hospital room; and ringing in the new year with noisemakers, shrimp cocktail and sparkling cider with hospital staff who drew the short straw and had to work on New Year’s Eve.
Nick died 12 years ago, so why do I still return to this place each year? It is because Nick, like the other children who were cared for in this huge, often anonymous institution are not forgotten — they are remembered and honored year after year with the annual Pediatric Memorial Service. In this medical mecca, children are not supposed to die. We are fortunate to have some of the best and brightest medical institutions in the world at our doorstep. Reports of miraculous new cures abound in the media, but there are some children who are not the success stories that are highlighted in hospitals’ marketing materials.
They are the children who didn’t survive. Those of us who receive an invitation to return to MGH each year for the Pediatric Memorial Service are a disparate group. Some of our children died when they were adolescents, some when they were in early childhood. Some died from a chronic illness, some from an acute infection or disease, and others suddenly by an accident. We come from different walks of life and professions. We speak different languages. Yet, on this day, year after year, alongside the staff who cared for our children, the barriers are lifted and we are all together as human beings, remembering the stories, sharing a hug, speaking our children’s names, and trying to find meaning in loss. Collectively, we understand the unique grief of losing a child.
Early in my professional career as a nurse, I heard a young physician say, “I don’t do death.” I’m not sure what this statement really meant — perhaps that somehow his superior knowledge could forestall death permanently? — but beyond its arrogance, it spoke of fear and hopelessness. As a society we are very isolated from pediatric death. We are fortunate that in the span of a few short decades we have seen a dramatic decrease in childhood deaths due to vaccines, antibiotics, and advances in medical treatments.
But this decrease has created a void in our health care professionals’ ability to know how to deliver care when finding a cure is no longer an option. Our medical and nurse training programs don’t “do death” well either, especially around societal taboos.
A physician at this year’s memorial service gave me hope for the future when she commented that her role as a doctor is to walk the journey with her patients and families and this includes the full spectrum of life and death. We look to our healers to cure us with the modern arsenal of medicine at their disposal, but when a happy ending is no longer possible, shouldn’t it also be their role to help guide us through the fear of the unknown and unthinkable, especially in pediatrics? Perhaps learning to step into the full spectrum of life and death is the meaning that the children who didn’t survive bring to the practice of medicine. Our kids have become the teachers, no matter how short their lives may have been. Their legacy is to continue to teach the healers how to walk alongside those who are confronting the unimaginable and unbearable with grace, humility and humanity.
So, I guess I keep coming back to walk through the doors of Massachusetts General Hospital year after year to remember, share a story, and to say thank you for honoring these great teachers who keep medicine honest, healing and humble — the kids who didn’t survive.