"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.


Musings on Life, Death and Springtime

This is the season when the ground swells with new life, trees burst forth with magnificent blossoms and the earth seems to come alive once more.  I am struck by this dichotomy more acutely than usual this year: As I breathe in the sweet fragrances of April, I am also preparing for a journey to Arizona to help my mother prepare for the burial of my stepfather.  The yin and yang of life -- birth and death, always teetering in some sort of cosmic balance.  

I often wonder; would the spring be less exciting and glorious if we never had winter?  Do we somehow need the reminder of life's fragility and impermanence to treasure the innate beauty of the present moment?  

And so, as the musing continues, I am filled with gratitude for the wake-up call I receive each spring when I am renewed with awe and wonder.

Healing the Broken Hearts in Newtown

As news of the horrific events in Newtown, Connecticut unfolded on Friday and over the weekend; 20 first grade students and 6 school staff murdered by a mentally ill young adult, my thoughts turned to those left behind...the families, friends and classmates. How will they begin to heal after suffering such unimaginable pain? I don't have any profound answers; I am without adequate words to comfort or explain such loss. After the memorial services have been held and the news media have moved on to new disasters, how will the broken hearts in Newtown begin to heal?

As one who has experienced every parent's worst nightmare, the loss of a child (my son Nick), perhaps this reflection, which I shared at last year's Pediatric Memorial Service at Massachusetts General Hospital and have also shared previously on this blog, may provide some hope for those beginning their journey of healing.

Sunday, November 6, 2011 ~ Massachusetts General Hospital, Boston, MA

"The only whole heart is a broken one...it lets the light in" ~Rabbi David Wolpe

"There are few choices afforded to us in how to survive the loss of a child.  Well meaning friends, relatives and professionals may advise us "not to let this tragedy define who we are", but I will have to respectfully disagree with this advice.  The tragedy of losing a child is a life changing event like no other: We are confronted with not only the loss of one we deeply love, but with the loss of our future as we had envisioned.  We are shaken to the very core of our existence and essence. Yes, this event will define us for the rest of our lives whether we want it to or not.

When our loss is new, it is unfamiliar and terrifying in its intensity.  I vividly remember waking up the morning after Nick died and being absolutely amazed and incredulous that the sun had the audacity to rise, that the school bus continued on its scheduled route down my street, that  people went to the grocery store, commuted to work and  that the mail was delivered...the outside world continued to function as if nothing had occurred.  It was a surreal scene.  Because for me it was as if a nuclear bomb had been detonated.  The world as I had known it had been destroyed with the death of my son.  My world now was defined as a new normal even though I wished desperately for the old normal to return. 

Rabbi and author, David Wolpe, aptly describes the feeling of new loss in this way  "When we experience a loss, a hole opens up inside of us. It is almost as if the loss itself plows right through us, leaving us gasping for air" and we bleed profusely through this opening. During the early days, months and years after our loss, we focus on how to slow down this  hemorrhage, this continuous emptying of grief.  But then something begins to change, very, very slowly; the immediate agony subsides. Around the edges of that opening, things begin to heal and scar tissue begins to form.  This is the point at which we can choose how the tragedy of our loss will continue to define our lives...we can choose  to allow the scar tissue to continue to form and thicken, closing the hole within us -- hardening us to the world with the unfairness and unjustness of our loss; or we can choose to allow the hole to remain open, allowing not only the stream of grief to flow out but permitting light, hope and meaning to enter.  I have chosen to allow the hole within me to remain open and this is one of the gifts my son has given me. 

Rabbi Wolpe suggests that "The only whole heart is a broken one, it lets the light shine in."  Allowing the hole to remain open, has allowed me to be a more compassionate person to others and myself, perhaps a bit less judgmental and more empathetic than I was in my old normal.  Keeping the hole open has made it easier for me to prioritize what really matters and not what I think should matter -- it now OK to say no to mundane tasks and yes to things that feed my soul.  I do not fear many things now -- after all the worst has happened to me, so what do I have to be fearful of now?  And most important, by keeping the hole open, continuing to allow the grief out and the light in, I am able to hold Nick and the meaning of his life close.  

So, perhaps I have what the professionals call a "maladaptive coping strategy", but I embrace the notion that yes, I have let this tragedy define me in a way I never imaged would be possible; by allowing my heart to remain broken, and open, it is, in my new normal, whole once more."