"I Don't Do Death"

"I don't do death" a physician once told me. The culture of modern medicine asks us to embrace the promise that cure is always possible and death is a failure of the health care system or the inadequate skill of a physician or nurse. It is my hope that together we can change our current culture of medicine by expanding our expectation that our students, residents and fellows are trained with the same rigor in high touch medicine as they are in high tech medicine -- so all healthcare professionals "do death" AND "do life" with compassion and skill. It has been a year since I wrote the following essay for Cognoscenti (WBUR) . Today, I again returned to the Massachusetts General Hospital for the 2014 Pediatric Memorial Service, so please indulge me in this redux. I welcome your thoughts and comments. ~ Pam

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.
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.

The author pictured with her son Nick in 1997. (Courtesy)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 the 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.


Remembering September 11: Reflections on Hope, Renewal, and Resilience

Those who will not slip beneath 
the still surface of the well of grief
turning downward through its black water
to the place we cannot breathe
will never know the source from which we drink,
the secret water, cold and clear, nor find in the darkness glimmering
the small round coins
thrown away by those who wished for something else.
~By David Whyte from Close to Home
 WTC 9 11

Do you remember when September 11 was just another day on the calendar? "September 11", or simply "9-11", has become a universally recognized phrase meaning a moment when, collectively, our lives in the United States changed forever. As the 10th anniversary of September 11, 2001 approaches, we are reminded of the cataclysmic events of that day, and the utter astonishment and disbelief that something like this could happen to "us".  While this was a collective moment, each of us individually will have our own private, personal "9-11's" in our lives.  Perhaps our personal 9-11's will come as a dreaded diagnosis, a late night phone call, an accident, a devastating natural disaster, an unspeakable hurt or loss. There will be no journalists covering our 9-11's, no awards for heroism, nor museums built, but that doesn't make our personal 9-11's any less devastating or life-altering. While we cannot prepare for what our personal 9-11's will look like, we can find ways to build resiliency; first by acknowledging the grief and loss that occurs when our life is knocked off its axis and then by diving deep to find ways to cope, make meaning, find purpose, and renewed hope in our "new normal".  I have been touched by reading some of the stories of resiliency this week, stories of those who have used these past ten years to rebuild lives in ways that look very different than the lives planned and imagined prior to September 11, 2001. This is the work of renewal, resiliency, and hope; to find something glimmering in the darkness, as David Whyte suggests in "The Well of Grief".  We cannot control the outcome of an event, a 9-11 in our lives, but we can control the experience by creating a renewed sense of purpose, meaning and hope in our lives as we adapt to our new normal.