In the News: Outrage and Distrust

A judge in Massachusetts declares a pregnant, schizophrenic woman incompetent and orders her to undergo an abortion and subsequent sterilization “to avoid this painful situation from recurring in the future.” The judge’s orders are struck down on appeal.

A transplant doctor in Philadelphia tells parents their daughter will not receive a kidney transplant because she is mentally retarded.

Both reports are outrageous, agreed? Both are loaded with emotional and ethical complexity. And there's a lot more to each story than I've just recounted -- which is my point. What I’m struck by in considering the stories is how they’re being told.

I learned of the judge’s outrageous orders through a thoughtful and exceptionally well reported story by Peter Schworm in the Boston Globe.

The initial judge’s orders were surprising, but so was the relatively swift response of an appellate court in reversing them. I have to believe that if this story had involved impending death, rather than impending birth, the courts would not have moved so swiftly or conclusively. The record of courts is poor in responding decisively in cases of intractable disputes at the end of life, when attempts at life-saving or life-prolonging care are seen as medically futile. Patients tend to die, often after extended periods of agony, before the court date arrives. Meanwhile, the care team is left delivering therapies they don’t believe in. It’s no surprise so many nurses quit soon after such cases.

In the Philadelphia case, what I’m learning is almost entirely through outraged response informed mostly by a blog post by the parents. And a physician’s reputation is being destroyed based on one-sided reporting of a private conversation.

It is one-sided because of HIPAA, an important law that protects patient privacy and is responsible for all those posted reminders in hospital elevators and elsewhere not to discuss patients. That a doctor and hospital can’t come to their own defense is perhaps appropriate, but it’s a serious downside of HIPAA.

In the Boston case, the facts were in the public record because they’d been dealt with through a legal process. And the reporter clearly is a first-rate journalist. And so, while the judge’s decision was no less outrageous for the high quality reporting, and the information revealed was hardly in the privacy interests of a mentally incompetent person, the information was solid, based on public record, and the events were put into context.

In the Philadelphia case, the facts are limited, the conjecture widespread, and some of the blogging both plays to and feeds public outrage and distrust (one notable blog headline: No Kidney for You (if You’re “Mentally Retarded”). The life of a physically and mentally challenged child is at stake, so the emotion and urgency are understandable. And yet the information being reported seems highly suspect to me.

What is said and what is heard vary greatly in meetings with physicians concerning medical judgments and hard truths about loved ones -- influenced by the inherent stress of such conversations, the knowledge and power disparity, the sad range in physician competence as communicators, and the selective hearing of family members.

In the family room at Boston Children’s in Fall 2005, I heard a transplant physician say my daughter’s bone marrow was “dead.” My wife was at that meeting. She says this never was said. Today, I remember hearing it, and yet wonder if it ever was said. My wife will perhaps always remember one transplant physician as overbearing, all-knowing and insensitive; I remember lousy communication skills but otherwise straightforward with information I didn’t want to hear.  (My bias: My daughter was cured by the donated marrow of a stranger -- not to mention medical therapies routinely denied patients in my own childhood for lack of practitioners, availability and success.)

It may be that the Philadelphia transplant physician and social worker’s version will be accurately told at some point, and perhaps the true story will be of an uncaring, badly reasoned and unethical decision to deny an organ to a worthy recipient. But perhaps it will be more complex than that. I suspect that what the physician said, or tried to say, included hard (and hard-to-know) truths about quality of life and life expectancy. The parents’ blog post talks of the physician’s Peruvian accent; hard truths about life expectancy are difficult enough to hear for a parent without additional language challenges. 

The parents’ story is convincing and compelling. It may even be an accurate accounting of the meeting, not simply of their perspective: http://www.wolfhirschhorn.org/2012/01/amelia/brick-walls/

Physicians are notoriously bad at predicting life expectancy. This is less the result of physician incompetence than our expecting them to know the unknowable. 

Especially in a year when Massachusetts voters will decide whether physicians ought to assist in the suicide of a terminal patient (again, expecting the physician to know how much time the patient has left), both stories are worth thinking about. The Boston Globe story, in particular, for its questions of competence, autonomy, best interests and choice; the Philadelphia stories for questions raised about HIPAA, rationing, the role of mental and physical ability in medical decision-making -- and the value of one human life.

Also worth reading are two pieces (http://huff.to/wCKQ5N and http://huff.to/wxnFSG) with opposing views on the Philadelphia case (the author of the latter piece, Susan Senator, is a personal friend of mine, and the reason I became aware of the case).