In Jahi McMath saga, science and religion clash
It will take more than doctors, judges and medical records to convince Nailah Winkfield that her child is dead.
Winkfield’s 13-year-old daughter, Jahi McMath, entered an Oakland hospital for tonsil surgery three weeks ago and wound up on life support.
Now Jahi is hooked to a ventilator that handles the mechanics of breathing, but she’s been declared brain-dead by several physicians, including a court-appointed neurologist from Stanford.
Officials at Children’s Hospital Oakland want to disconnect the machine; Jahi, they say, has zero chance of recovery.
Her family members disagree and have blocked the move in court. They see signs of life, they say, when they touch her. They want to wait on God for the miracle that might awaken Jahi.
Medical reality says that’s wishful thinking by a grieving family whose solace rests on steadfast and irrational denial.
The legal logistics were resolved Friday, when the family and hospital officials met in court and reached an agreement that will allow Jahi to remain on the ventilator while she is transferred to another facility.
But that doesn’t end the conundrum; it just prolongs this high-profile clash of science and theology.
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Jahi’s family’s determined crusade reflects our collective cultural discomfort with unpalatable end-of-life choices — and our tendency to arm for battle, rather than aim for understanding.
Disagreements like this are not uncommon between physicians and family members, though they seldom go on for so long or become such public fodder.
Families of brain-dead patients need help understanding what’s happened and time to grieve their losses. That’s why many hospitals enlist ethics experts to guide the decision-making process.
“There really are no super-duper great answers that are going to please everybody,” said Dr. Richard Boudreau, a physician and lawyer on the faculty at Loyola Marymount University’s Bioethics Institute and the ethics team at Marina del Rey Hospital.
“The medical staff is hoping the decision is made in five minutes,” he said. “The family is going to talk, going to pray, going to cry.... We have to handle that family respectfully and with as much dignity as we can.”
It’s not clear that happened in this case, which might have unfolded differently with fewer lawyers and public relations consultants and more patience and sensitivity.
The California Department of Public Health is investigating what might have gone wrong during and after surgery in the hospital’s treatment of Jahi.
The child’s sudden tragic lapse — she was chatting with her family in the recovery room when she started spitting up blood — confused and unnerved her loved ones.
The hospital’s insistence on promptly disconnecting her ventilator, without explaining what had gone wrong, turned that anguish into anger.
“They have not given me a reason yet of why she went into cardiac arrest. They haven’t even given me a reason for her bleeding. They haven’t given me a reason that they couldn’t stop the bleeding,” Winkfield told CNN. “The only thing they keep pushing for me is to get her off their ventilator.”
So Jahi’s mother is tuning out doctors and resorting to prayer. She believes that, given time, God “will spark her brain awake.”
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This case doesn’t hinge just on technical distinctions between brain death and coma. It demonstrates how religious convictions can turn medical decisions into legal dramas.
Think of those parents who wind up in court because they refuse to put their children through chemotherapy or approve life-saving treatments that they say violate their religion or mock their faith in God.
“No matter how much medical evidence we present to the family, if they have a faith that dictates things, it’s hard to overcome that,” said Boudreau, the bioethics expert. “They are going to believe what they’re going to believe; our job is to sort things out.”
Boudreau suspects that sorting-out didn’t happen in this case.
He would have convened a team of physicians, social workers, grief counselors and clergy to walk Jahi’s family through the process: to explain why a twitch when you touch your daughter isn’t a sign of life, to help the family focus on saying goodbye instead of holding on.
“You go to the family, sit down with them, listen, let them get it out,” he said. “You forget about lawyers … just tell the truth. Say you’re sorry it happened and you wish you could reverse history, but you can’t.”
In this case, the family lawyered up early and took their case public. Then the hospital hired a consultant, whose website calls him “the fixer,” to manage the media fallout. That has led to a public battle with each side demonizing the other.
Friday’s settlement seems like a victory for the family. But moving Jahi to a facility that will treat her like she is alive won’t resolve the issues laid bare by this heartbreaking holiday saga.
There is nothing simple about convincing a family, faced with a warm, breathing body, that a loved one is actually dead. How long do they get to come to grips with that reality? Two days, four weeks, six months? When is it time to give up?
“The family’s unwilling to admit failure; they are not going to quit,” Boudreau said. “It’s, ‘Our faith tells us we can believe in miracles. We don’t need medical confirmation. We are going with God’s will.’”
It must be hard to reconcile that kind of relentless faith with the humbling reality that medicine sometimes fails.
Twitter: @SandyBanksLAT
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