Brain Dead Child Discharged to Home With Parents

Euskadi1946 · Oct 28, 2004

Here is the latest news on Jesse Koochin

No death certificate for Jesse

Primary Children's says the boy is brain-dead, but will leave the final decision to his parents

By Elizabeth Neff

The Salt Lake Tribune

Doctors say 6-year-old brain cancer patient Jesse Koochin is legally dead, but Primary Children's Medical Center on Wednesday agreed not to file a death certificate for the boy.

The promise ended a court battle that began Oct. 13, the day hospital physicians told Steven and Gayle Koochin of Florida they would remove the brain-dead child from life support.

The couple, who came to Utah seeking alternative treatments for Jesse, obtained a restraining order that day preventing the hospital from pulling the plug. The Koochins took their son home to a Salt Lake City area apartment two days later, where they continue to care for him with the help of nurses.

After a court hearing Wednesday, Steven Koochin said his son - who remains on a ventilator - is reacting to cold and to touch with limb and eye movement.

"Right now, Jesse is still as he was when he left Primary Children's - on the fence," said his father. "It will take a miracle, and that's what we are praying for."

While the Koochins' court case has ended, the difficult question of what should be done when parents disagree with a doctor's determination of death remains. There are no laws saying doctors have to keep patients they believe are dead on life support.

In a statement issued Wednesday, Primary Children's says it has no intention of caring for brain-dead patients meeting Utah's legal definition of death in the future.

"It is understandable that the death of a child is difficult for parents," the statement said. "Nevertheless, our staff cannot continue to provide treatment for patients who have met the condition of brain death because it is unethical to do so. In fact, if a hospital tried to bill a payer for such services, it could be considered medical fraud."

The statement said any medical study that proposed keeping a person on a ventilator for an undetermined period of time after brain death would be rejected as unethical by every institution in the country.

"Primary Children's Medical Center is dedicated to providing the best medical care to all children of our service area in an atmosphere of love and concern," the statement said. "However, even the best treatment cannot save every

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child, and we grieve with parents when that is the case."

The Koochins are still hoping alternative medicine can help their son. Steven Koochin said his son's blood pressure is 111/88 - considered fairly normal for a 6-year-old - and that his heart is beating strongly at 79 beats per minute.

"He's fighting for his life," Steven Koochin said.

The family is giving Jesse a strict - and expensive - diet of juiced fruits and organic foods. Medicaid is paying for some equipment costs, but other bills are mounting and the family has spent well over $80,000 so far for the boy's care, Steven Koochin said.

Gayle Koochin did not attend Wednesday's court hearing, but her older sister, Donna Lisa Wray, did. Wray said she came to Utah from Florida to see her nephew after reading what she termed gruesome reports from doctors that Jesse's body was decomposing.

That is not the case, Wray said, pointing to a picture she took of Jesse Wednesday morning. "He's there, he's alive, he responds to people who love him," she said.

Wray said she will stay with her sister to help with Jesse's care. "If his heart stops beating," Wray said, "then that's God's choice, not a doctor's."

Steven Koochin said any donations to help Jesse may be made through the Florida chapter of the B.A.S.E. Camp Candlelighters Children's Cancer Foundation.

Ninety percent of any donation will help Jesse, while 10 percent will go to the group, he said.

Donations can be sent to the Jesse Koochin Cancer Fund, 7501 Glenmoor Lane, Winter Park, FL 32792.

chris_at_lucas_RN, RN · Oct 29, 2004

I guess he's not decomposing then, as was stated in an earlier post.

I see nothing wrong with a child like that being cared for at home. Who said the best place for sick people was a hospital anyway?

Certainly if that's the most appropriate care to be had, sure, put 'em in a hospital. But this kid is (you should pardon the expression) circling. If his parents want him home, by golly, that's where he should be.

Much cheaper to the family, the insurance company (not your problem unless it's your insurance company too, and then watch those premiums skyrocket!), and better for the kid.

I say go for it. (But not if he's decomposing..... :imbar )

talaxandra · Oct 29, 2004

The references earlier to decomposition concerned me, as tissue integrity is not brain-mediated.

It is cases like this that make the concept of bain death ambiguous, if not actually questionable - not just as a biological definition, but also legally. If brain death is legally and medically equivalent to somatic death, how can a hospital say "according to us he's dead, but we leave the finally decision [about whether or not he's dead] to his parents"?

mamajapko · Dec 9, 2004

6-year-old brain-dead boy dies

Debbie Hummel THE ASSOCIATED PRESS

SALT LAKE CITY -- A 6-year-old brain-dead boy whose parents fought to remove him from hospital care, hoping that alternative treatment would cure him, died Friday.

Jesse Koochin, of Clearwater, Fla., was declared brain-dead by doctors but was ordered kept on life support by a judge after the parents insisted he could recover.

He was brought to St. Mark's Hospital in Salt Lake City by ambulance just after 1 a.m., according to hospital spokeswoman Deb Reiner. Doctors were unable to resuscitate him and he died at 1:30 a.m., Reiner said.

The hospital said the family requested privacy.

The boy had been in a coma after suffering complications from brain cancer. Doctors at Primary Children's Medical Center said he was dead, but his parents maintained that he still was alive and capable of recovery. After winning a restraining order Oct. 13 that kept Jesse on life support, Steve and Gayle Koochin took him home two days later.

Jesse had been hospitalized in three states and in Mexico, as his family went to great lengths to treat his cancer.

His father maintained that Jesse had previously fallen into a coma and was given about a week to live, but then responded to treatment in Mexico. He believed the same would be true in Utah, and after the boy had been released to the family Steve Koochin gleefully reported every twitch and response to touch his son made.

Meanwhile, the family with the help of a Hospice worker, tried to nurse Jesse back to health with alternative medicine and fed him organic juices intravenously.

The Koochins came to Utah to see a local doctor who could provide alternative treatment designed to rehabilitate his immune system. The boy was so ill, however, the doctor sent the family immediately to the emergency room at Primary Children's, where he was diagnosed with incurable brain cancer.

The size of his tumor more than tripled in the few days he spent at the hospital and his brain stem was eventually pushed down through the base of his skull. Two separate doctors, following rigorous protocols, declared the boy brain dead.

Dr. Chris Maloney, Primary's associate medical director for medical services, said Jesse's brain had even begun to decompose and that would eventually lead to cardiac death.

Primary Children's declined to comment on the boy's passing, except to say, "the staff here would express their deepest sympathy to the family," said spokeswoman Bonnie Midget.

A call to the family's attorney in Salt Lake City was not immediately returned.

In Utah, there is no case law regarding whether doctors have to keep patients they believe are dead on life support. The law says a person is dead if physicians have determined "irreversible cessation of all functions of the entire brain, including the brain stem."

Statutes provide guidance in cases where a patient has an advance medical directive or family members want to remove their loved one from life support. But they do not state what should happen when a family disagrees with a doctor's determination of death.

On the Net:

http://www.jessekoochin.com

This story appeared in The Daily Herald of Utah County on page D3.

Hellllllo Nurse, BSN, RN · Dec 9, 2004

Well, I hope people don't start shooting up orange juice after reading this line from the article:

"fed him organic juices intravenously."

Anyway, as it was stated, denial is a pwerful thing.

That family really loved that little boy. How very, very sad.

gwenith, BSN, RN · Dec 9, 2004

I think that the saddest part was the inability of anyone to be able to help those poor parents cope with their greif.

Yes we can clearly now see where the decomposition part came in but I do remember reading reports from the early days of mechanical ventilation prior to our international standard of brain death criteria. The report talked of two things 1) sudden and irreversible asystolic cardiac arrest happening within 3 days to 3 weeks after the pronouncement of death and 2) continuing decomposition of the body. The report talked of the patients "rotting away" on the end of the ventilator - that was enough for me - I have a vivid imagination.

talaxandra · Dec 10, 2004

Well, I hope people don't start shooting up orange juice after reading this line from the article: "fed him organic juices intravenously."

That was my first thought, too. Well, after 'thank god'

stevierae · Dec 12, 2004

The report talked of the patients "rotting away" on the end of the ventilator - that was enough for me - I have a vivid imagination.

I remember those early days, too--in which brain matter, liquefied, would ooze out the ears and nose, and, if there were any breaks in the scalp, (i.e., from a previous craniotomy, subarachnoid screw or shunt placement) from those sites, too. In fact, it would often saturate any head dressing, and smell like decomposition.

What I can't figure out in this case is why hospice RNs--if indeed they WERE RNs, and not just non-medical volunteers--did not help this family come to grips with the reality of the situation, instead of apparently givign them false hopes and "caring" for a dead child.

fergus51 · Dec 12, 2004

The one thing I've learned working in the NICU is that parents have an endless capacity for denial. It's terribly sad.

BeenThereDoneThat74, MSN, RN · Dec 20, 2004

I think I'm almost speechless... more so, I'm grossed out (by the questionable rotting and decomposition). I can't even say how I feel. And as a nurse, I would really have a problem providing care (much less- hospice care) in a situation like this.

Euskadi1946 · Dec 21, 2004

Just wanted to update you on Jesse Koochin. He passed away a couple of weeks ago. He is in a much better place now.

webblarsk · Dec 21, 2004

Such a sad situation. I too don't understand why hospice didn't play a bigger part in the care of this child and his family. There is so much support that can be offered through hospice, but in this case it dosen't appear that it happened.

Of course..........on the other hand. Denial can be a difficult thing to overcome. :crying2: