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Voiceless at the End of Life

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Voiceless at the End of Life
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Voiceless at the End of Life
Doctors rushed an ill-fated motorcyclist with severe injuries to the head and chest to the ICU. Emergent CT scans revealed brain swelling so pronounced it was squeezing out of the skull plus multiple fractures of the bones of the face.

Doctors tried everything: they induced a barbiturate coma and gave treatments to decrease swelling of the brain. When that failed, they tried a last resort: they removed part of his skull to release the lethal pressure build up.

Nothing worked. Periodically all sedation was lifted and ... no speech, no flutter of the fingers, there was no spark of recognition in the eyes. His chest rose and fell solely because of the clockwork suck and whir of a mechanical ventilator. He was punctured by plastic catheters in his neck, his arm, and his penis, and he received liquid nutrition through a tube in his stomach. One by one the inevitable complications of weeks in an ICU marched across his body - infections, clots, and bedsores.

This is where I came in. I am not a surgeon, or a critical care physician. I am not a priest. But in this hour of mortal need, I was who they called. I am a clinical ethicist, and they asked me to speak up for the right to let a loved one die.

The doctors, nurses, and social workers caring for the patient knew there was nothing more they could do to save his life, and they had confessed this, gently, to his family. Long conversations and then consensus ensued: this fun-loving hobbyist who most loved the open highway and the wind in his hair would not want to live this way.

But there was a catch: he had no legal decision-maker. No one could speak for him, legally.

In most states, there is a clear hierarchy of legal representatives for patients who cannot speak for themselves. First the spouse, then the adult child, then the parents, or a sibling - and so on down the line.

In my home state, New Hampshire, and a dozen other states, there is no such hierarchy, no statute specifies the chain of command. That means unless the patient has an advanced directive document, or has appointed a durable power of attorney for healthcare, there is no default legal representative.

This puts patients, families, and clinicians in a bind: should we adopt some convenient chain of command by default, or must the legal guardian be specified in court? In practice, the right decision-maker is often obvious, and we listen. But when the decision-maker isn't clear, or when there is controversy, we get the court to appoint a legal guardian. This can take days or even weeks.

In this patient's case, there was no uncertainty or controversy. But out of an excess of caution, the family went to court anyway to be designated his legal guardians. The court obliged, with one exception: the judge did not grant them the power to withdraw life-sustaining therapy.

The judge was trying to do the right thing. Confronted with a complicated medical situation and a family he did not know, the judge did not want to move precipitously toward withdrawal of life-sustaining therapy. Plus, he felt obligated by a 1986 New Hampshire state supreme court case called In re: Doris M. Terry to ensure we met certain legal criteria for withdrawal of life-sustaining therapy by a legal guardian. So he asked the hospital to appoint a physician ethicist to describe the patient's prognosis and to discuss whether it would be ethical to stop life-sustaining therapy.

That is where I came in. I reviewed the records, discussed the case with the ICU team, examined the patient, and met the family. And then, on a hot July day, I put on a suit and took the stand, swearing for the first time to tell the whole truth and nothing but the truth.

I laid it out in plain English: I listed the patient's injuries, including the missing half of his skull, and I described his poor response to standard neurological tests of brainstem function. I cringed that the patient's family had to hear the gory details, but none of this was new to them - they had been witness to this nightmare for weeks.

The judge was thoughtful and concerned, and in the end he ruled the family could withdraw life-sustaining therapy. Soon thereafter doctors slipped the breathing tube out of the patient's mouth and gave him medicines to prevent air hunger and anxiety.

I was glad the case worked out in the end, but aggrieved the family had to go to court in the first place. The doctors, the nurses, the family and the judge were all acting in good faith. But they were trapped in a legal quagmire. It is long past time for the laws in New Hampshire and elsewhere to give families a voice at the end of life. Unless conflict requires it, we should not turn the deathbed into the scene of a courtroom drama.

Just weeks ago, our patient rode his motorcycle on a sunny day with no idea what was around the next turn. Today he is dying. Tell the people you love that you love them, and let them know what you want done if you cannot speak for yourself when catastrophe strikes. To learn more, click on these links about end-of-life decision-making, advanced directives, and state surrogate decision-maker laws.

Images: Shane T. McCoy, United States Navy and Commander, U.S. 7th Fleet

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