BAD CARE, BY POPULAR DEMAND

Spring 2006 is when the miracle occurred. It is when medical science saved my daughter’s life with a bone marrow transplant. But there weren’t enough miracles to go around, and in the weeks just before and after the transplant, three children we’d come to know at Boston Children’s Hospital died. One young woman needed a transplant but lacked a donor. She’d spent hours on the ward playing with a younger boy who would attend her funeral, delivering a cribbage board to her casket, days before recurrent cancer killed him. Another young boy also had a cancer stubbornly resistant to treatment. He died after therapeutic options ran out, his family said goodbye, and he was removed from the respirator.

The juxtaposition of my family’s good fortune with tragedy for these other families changed me in ways I’m still sorting out. Certainly my respect for life and acceptance of death became interwoven as they’d never been. And now, with my colleagues on the Community Ethics Committee having just concluded studying the use of palliative sedation for the imminently dying, we are considering what ought to be our next ethics engagement. Two subjects stand out: medical futility and advance directives.

Medical futility is the point at which the doctor believes dying is in process and treatment is of no therapeutic value. This is a brutal truth to admit or convey, and can be a trigger point for disagreement, as the patient or family insist that “something” be done to prolong life. Who is to say nothing can be done when feeding tubes and ventilators can prolong life indefinitely? If you believe in miracles, then “doing something” can mean keeping an otherwise dying loved one alive by artificial means and praying for intervention. But faith alone isn’t a treatment plan, and so the doctor must choose between denying futile treatment or providing bad care by his or her own professional standards. Either way, integrity is compromised.

Advance directives offer a solution to this scenario, in at least some cases. An advance directive is essentially a road map drawn for the physician by the patient and spelling out what is worth fighting for, and what is not. Given the stated desire of many patients not to die in a hospital, advance directives are a means for that desire to be honored, even for a patient who can no longer express the wish.

The problem is, the better medical science gets at extending life, the worse society gets at coping with the reality of death. Just recently, a New Jersey court ducked the medical futility issue and sent it to the state legislature; a futility bill passed the Idaho senate but then stalled; a health board in Winnipeg, Manitoba, is sorting out a dispute over treatment of a man who died during a “temporary injunction” in a doctor-family futility impasse; and the Obama administration withdrew “voluntary advance care planning” from Medicare funding policy. Medical futility, advance directives and health care policy seem to be swirling in a perfect storm that is frighteningly complex for society to effectively confront, but is building off the coast like an El Nino.

The questions are so daunting that only one state legally supports a physician who refuses to provide inappropriate treatment. In Texas, if a hospital ethics committee agrees with the physician’s assessment that the patient is beyond therapeutic treatment, the law supports withholding inappropriate care. One argument used to defeat a similar measure in Idaho was that it would allow physicians to disregard an advance directive -- that is, to go against a patient’s wishes, which this argument holds sacrosanct. Such a slippery-slope fear also foresees the physician empowered to decide which lives are worth living. This view doesn’t hold physicians, or the system in which they work, in very high esteem.

Such distrust -- of doctors, health care institutions, and government -- is getting in the way of an urgently needed national conversation about how we die. Meanwhile ICUs keep more people mechanically alive, families face moral choices previous generations never had to consider, and costs are the elephant in the room.

At its influential extreme, the pro-life movement forcefully opposes the type of end-of-life planning required for an advance directive. A pro-life website recently celebrated the removal of “voluntary advance care planning” from Medicare funding (“Obama Admin Removes Death Panels After Pro-Life Backlash,” Lifenews.com). But advocating planning of end-of-life care is not the same as end-of-life advocacy. The distinction is important. Slippery-slope fears of rationing and devaluation of life put the pro-life movement in the position of tacitly endorsing and encouraging bad medical care.

Neither medical futility nor advance directives came up during my daughter’s illness. We never got to the point of no more options for medical treatment, and maybe I’d feel differently if we had. But therapeutic options ran out and hard choices were made by the other three families, with whom we shared doctors and nurses dedicated to saving all our children’s lives. Those physicians didn’t make judgements on lives worth saving; they acknowledged with sadness the limits of their life-saving skills.

Whichever one we study first, medical futility and advance directives will be on the CEC’s radar for a long, long time. Anything this difficult to talk about -- for doctors and patients, and for the society we live in -- must matter a great deal. In the dialogue, perhaps we’ll discover the renewable nature of trust.