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.
The author pictured with her son Nick in 1997. (Courtesy)
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.
Have you considered the language of cancer? Battle metaphors abound..."the war on cancer", "survivor", "hero", "winning the battle", "conquering", "fought the heroic fight", "lost the battle" etc. Why do we use these metaphors with cancer but not with other diseases? For instance do we use the same language to describe someone living with or who has died from such chronic and life-limiting illnesses as chronic obstructive pulmonary disease, heart disease, diabetes? Why the difference? Language is important and the effect on ourselves and others as we identify with certain metaphors is interesting to consider. An interesting discussion of this topic in a blog post from the Dana Farber Cancer Institute in Boston
