In a conference room at Harvard Medical School, a gathering of doctors, lawyers, bioethicists, clergy, students and others considered how the care for a dying elderly man and his hospital-shopping wife might better have been handled. The conversation cried out for a soothing touch, and fittingly, it was a nurse who came through. The wife, in delusional denial and desperately clinging, had been singing to her comatose husband. A nurse asked what song the woman had been singing.
The laughter came as welcome relief in a room full of more caring hearts and minds than answers. But the nurse’s comment has stayed with me, and become less funny over time. It might have been the smartest question asked that day. But it was never answered, and the conversation moved on to a lawyer’s insights. So it is with the nurse’s voice.
I thought of this nurse as I watched the Frontline documentary “Facing Death,” which follows several end-of-life cases at Mount Sinai Medical Center in New York. The footage and interviews with doctors, patients and family are compelling, and unquestionably helpful in improving understanding of a quandary unique to our time -- accepting death when technology says you don’t have to. (“Facing Death” airs November 23 on PBS stations, but can be viewed online now at http://www.pbs.org/wgbh/pages/frontline/facing-death/)
Missing from the documentary is what should never be missing from this dialogue -- the nurse’s viewpoint. Nurses are the Waldo of “Facing Death.” Where are they? The documentary is full of poignant scenes of doctor-patient and doctor-family dialogue, always difficult and sometimes brutally honest, and shines a brilliant light on a problem that, if society doesn’t sort out, money will forceably and inequitably decide. This is the subject underlying the country’s “death panel” insanity, and kudos to Frontline for looking at it rationally and insightfully. Kudos, too, to the doctors and families who’ve put themselves on display in situations that couldn’t be more difficult. Allowing cameras at such a time took extraordinary courage, but is of such great value.
What “Facing Death” does well, it does exceedingly well. It makes the point that end-of-life medical practice today was science fiction twenty years ago, when letting go wasn’t really a choice, and that billions of dollars are spent on end-of-life care, which is not sustainable. While technology can prolong life, there are no promises about that life being improved. One doctor says nearly 95 percent of Mount Sinai’s medical ICU patients can’t communicate, a fate Atul Gawande has termed “warehoused oblivion.” Each case is uniquely challenging, and yet shares the harsh fact of a life ending. Only the number of days left is in question.
“Facing Death” is invaluable for any med student, for its view into when “doing no harm” gets particularly tricky. And yet, for all the poignant conversation and close-ups on care, nurses are mostly blurred motion and background noise. The one nurse quoted is the daughter of a dying woman at odds with her sister, who happens to be a doctor. The nurse/sister advocates for acceptance and compassionate care; the doctor/sister wants to do what’s required to maintain the parent’s pulse.
All is revealed through narrator, doctor or patient/family. No clergy is involved. No therapist. And no nurse.
In the Harvard case study, the wife demanded that something be done to keep her husband alive, and the doctors saw an irreversibly dying man. In the center of this quandary were the nurse and the patient, the latter unconscious and seemingly unaware, except when he was cleaned. This was necessary to avoid infection, and required removing dressing from raw, deteriorating flesh. His agony transcended his unconscious state. A nurse did the cleaning. Nurses have a high enough burnout rate without being asked to torture a dying man.
“Facing Death” adds to an important and timely conversation, but nurses should have been heard from. Because in care at the end of life, whether therapeutic or palliative, nurses are as front line as it gets.