Last week, during the national ADAPT Action here in Chicago, several people forwarded one of those stories that brought to mind Yogi Berra's "This is like deja vu all over again."
The story that provoked this "I've seen this before" feeling was about Jill Finley, who came out of a coma - 14 days after its onset and after her husband had ordered removal of life-support after some not-so-subtle nudges from the physicians:
Doctors wouldn’t come right out and say that the situation was hopeless, but they did say that only one to two percent of such cases recovered to live normal lives.
“It was grim,” Ryan told Vieira. “I’ll put it that way. Everything they told me was grim.”
Ryan Finley found his wife unconscious and unresponsive one morning and administered CPR he had learned many years earlier. They now know Jill has a condition that causes her heart to stop beating and now has a pacemaker to correct for the condition.
In the same story, Jill Finley told Meredith Vieira that it was a "miracle" for her to be alive and talking.
She might be right, but probably not for the reasons she's thinking.
The past year or so has had stories of other people written off early after going into a coma. Back in June of this year, we had the story of Jesse Ramirez. He suffered traumatic brain injury in an automobile accident. His wife, acting on the negative prognosis given to her by physicians, ordered the removal of her husband's feeding tube a little over a week after his injury. Other members of the family contested her action, which bought valuable time, time in which Jesse Ramirez started to recover:
His siblings and parents refused to give him up for dead, and today, Jesse Ramirez is alive and conscious.
Two weeks ago, he was the center of a family battling over of whether he should live or die.
Now, he can hug and kiss, nod his head, answer yes and no questions, give a thumbs-up sign and sit in a chair.
Some family members, quoted in media reports, called the recovery of Jesse Ramirez "a miracle."
In an ABC News story attempting to explore the ethical implications of the Ramirez case, Dr. Steven Miles gave a frank assessment of apparent rush to end the life of Jesse Ramirez:
"This case is about a hasty clinical decision which should have never been made," he says. "In terms of the process itself, stopping the feeding tube this close in time to the injury is actually pretty unusual.
"This is about malpractice, not about a persistent vegetative state."
It's gratifying to see Miles call the medical advice in the Ramirez case for what it is. However, I have to wonder if he really can support his assertion it's "unusual" for doctors to be pushing for treatment withdrawal so soon after an injury. The Ramirez case only became public because of a legal battle between family members. His recovery was made possible because of the court order stopping the removal of the feeding tube.
It seems reasonable to assume that in most cases, family members reach agreement, and no one other than they and the doctors who gave them advice know about what happened. Cases like Jesse Ramirez and Jill Finley could be rare - or they could be the tip of a large iceberg.
There's one more case that should be mentioned in this context. In January, 2006, a judge ruled that 11-year-old Haleigh Poutre should be entitled to "pass away with dignity." The Department of Social Services had sued to end Poutre's life-support less than two weeks after alleged abuse by her adoptive parents put her into a coma. Her physicians at Baystate Medical Center described her as "virtually brain dead." One day after the judge's ruling, verified reports came out of the hospital that Haleigh was conscious and responding to commands. She would never have had the time to recover without the suit brought by the person charged with abusing her, challenging the state's authority to end her life. Her death and the decision that authorized it would have just been one more "end of life" case.
There was considerable fallout in the Poutre case, but most of it fell on the Department of Social Services. The physicians at Baystate Medical Center avoided being challenged by the press and the public. The same kind of failure we see in the kinds of things not being asked of the physicians who were in charge of caring for Jesse Ramirez and Jill Finley.
The next time you see a story like that of Finley, Ramirez, or Poutre, avoid thinking of them as "miracles" and think of them as survivors. And let's ask their doctors how many other patients they're treating aren't quite so lucky. --Stephen Drake
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