ACCEPTING MORTALITY

Atul Gawande’s essay “Letting Go” won’t let go of me. I’m on my third reading since it appeared in The New Yorker in early August. Subtitled “What should medicine do when it can’t save your life,” the story holds particular power because of the clarity it brings to a subject so desperate for light: how we die.

Death was a tough enough nut before medical science became so adept at saving people who in another time would have bled to death, been defenseless against infection, or had no alternative when the organs they were born with gave out; when no one had to ask whether it’s murder to remove from artificial respiration an unaware and incoherent human being, living what Gawande terms “a warehoused oblivion.” Even ancient rites of passage have been supplanted by 24/7 monitors and an IV drip.

Gawande, a surgeon at Boston’s Brigham and Women’s Hospital, writes of a terminal patient whose sibling wanted to know if her sister was dying. “I wasn’t even sure what the word “dying” meant anymore. In the past few decades, medical science has rendered obsolete centuries of experience, tradition, and language about our mortality, and created a new difficulty for mankind: how to die.”

What I find particularly helpful about Gawande’s piece is its insight into death’s shape-shifting reality, and the position it places doctors, who are expected to know what’s going to happen and when, what to do, explain it well, listen even better, and not trample on hope in the process. This gets even more dicey when cost enters the equation -- money and death are a toxic pairing for dialogue, and today cost and care are inextricably linked. The last thing medical staff want to do is destroy a patient’s hope, and yet what is the doctor to say when the truth, to the degree it is possible to know, is that the patient is dying. The only question is when.

At such a time, communication is as important to get right as a dose of medicine. “A family meeting is a procedure,” a palliative-care specialist tells Gawande, “and it requires no less skill than performing an operation.” And yet communication can be the least of a doctor’s skills.

Gawande writes: “Surveys of patients with terminal illness find that their top priorities include, in addition to avoiding suffering, being with family, having the touch of others, being mentally aware, and not becoming a burden to others. Our system of technological medical care has utterly failed to meet these needs.”

It is a further complication that what a doctor says isn’t necessarily what a patient hears, even when both ostensibly speak the same language. New studies show that patients hear the good news and tend not to hear the bad. Additionally complicating is that, according to a hospice nurse Gawande quotes, patients can somehow understand a fatal diagnosis without acknowledging they are dying. So how should medical professionals negotiate that emotional chasm between working to prolong a patient’s life and telling the patient he or she is dying? Destroying hope does harm, and a patient’s capacity to hear harsh truth varies. But getting the patient and family to an understanding about dying carries this additional incentive: research increasingly shows that palliative treatment for the terminally ill improves quality of life and in some cases extends it.

The Community Ethics Committee, formed as an independent group to provide consultation services to the Harvard teaching hospitals, has brought a public voice to the bioethics dialogue for more than three years now. Our conversations seldom stray far from mortality. Should medical staff be required to administer CPR to a dying patient if the family wants it, even if CPR offers no therapeutic benefit and would make the patient’s last living experience one of violence? What is the toll on medical staff made to perform that act? When is it OK to harvest a dying pediatric patient’s organs? If an organ is available from another institution, but was harvested seconds or minutes earlier than your hospital deems appropriate, is it ethical to give the organ to a patient in desperate need? What matters more, the organ’s ethical taint, or the potential life saved? Is it ever OK for a doctor to participate in euthanasia or assist in suicide? If not, is it appropriate to prescribe medication for a dying patient strong enough to alleviate merciless pain when both prolonging life and ending it are possible outcomes?

And what is a death panel, anyway? I’ve thought about that peripheral subject only enough to dismiss it as a political fiction, but the public fear behind it is so very real and daunting, as is the distrust behind the fear.

“The simple view is that medicine exists to fight death and disease, and that is, of course, its most basic task,” Gawande writes. “But the enemy has superior forces. Eventually it wins. And, in a war that you cannot win, you don’t want a general who fights to the point of annihilation. You don’t want Custer. You want Robert E. Lee, someone who knew how to fight for territory when he could and how to surrender when he couldn’t, someone who understood that the damage is greatest if all you do is fight to the bitter end.”

Alas, contemporary medicine lacks both Custers and Lees, according to Gawande. “All-out treatment, we tell the terminally ill, is a train you can get off at any time -- just say when. But for most patients and their families this is asking too much. They remain riven by doubt and fear and desperation; some are deluded by a fantasy of what medical science can achieve. But our responsibility, in medicine, is to deal with human beings as they are.”

Which requires superior communication skills. This conversation, no mere mortal, might go on forever. So I’m hanging on to “Letting Go.”

-- Though Paul C. McLean is a member of the Community Ethics Committee, this blog entry does not necessarily express the views of the CEC or other members.