MARY REICHARD, HOST: It’s Tuesday, the 30th of July, 2019. Glad to have you along for today’s edition of The World and Everything in It. Good morning, I’m Mary Reichard.
NICK EICHER, HOST: And I’m Nick Eicher. First up, a sensitive issue. What happens when a doctor declares a person brain dead, but that person’s loved ones aren’t ready to give up yet?
The notion of brain death is a relatively new phenomenon. What it means is the complete loss of brain function, including involuntary activity like breathing. Most doctors say brain death is permanent. But even when faced with that diagnosis, some families aren’t ready to stop seeking treatment.
REICHARD: But in most states, that decision isn’t up to families. Doctors are allowed to end life support after making a determination of brain death. But some say parents should have the right to make that decision for their children. A California court is reviewing one case that could have implications for families across the country. WORLD Radio’s Anna Johansen has our story.
ANNA JOHANSEN, REPORTER: The 9th U.S. Circuit Court of Appeals is taking a closer look at the case of Israel Stinson—a toddler removed from life support against his parents’ wishes in 2016.
Two-year-old Israel had suffered a severe asthma attack and lost consciousness. Doctors declared him brain dead and issued a death certificate. But Israel’s parents refused to sign it. They said their son was still alive, and they wanted him to get more treatment.
FONSECA: I know you’re gonna come out of this, baby. Whenever you’re ready.
Israel’s mom Jonee Fonseca took video of him in the hospital. The clip shows him making slight movements in response to her touch and voice.
FONSECA: Israel, baby, Mommy’s here! … Do it one more time… There you go! Yes, yes, yes! It’s amazing, huh? … You can hear Mommy and you can feel Mommy too.
Doctors said the movements were involuntary reflexes, not intentional responses. After a lengthy legal battle, a California judge decided against Israel’s parents and the hospital removed him from life support. He died in August 2016.
Israel’s parents filed suit after his death. They say there’s a universal issue at stake: Should a doctor’s decision trump parents’ rights? The 9th Circuit announced earlier this month that it needs more information before reaching a verdict.
SNYDER: We’re really hoping for a change in the law so that you don’t have these situations where. It takes the parents, it takes loved ones, family, friends, completely out of the decision.
Alexandra Snyder is the executive director of Life Legal Defense Foundation. That’s the organization that first took on Israel’s case in 2016. Snyder points out that in most cases, if a child is going to undergo some type of test, the parents have to give the okay. But when it comes to testing for brain death, doctors can move ahead without parental approval.
SNYDER: It’s called the apnea test. And what it does is they take the patient off of the ventilator for about up to 10 minutes to see during that time if they’re going to breathe on their own, and during that time they’re not given oxygen…so there they get further injury to their brain.
Snyder says that kind of testing shouldn’t happen without parental consent.
SNYDER: They have no say regarding the test. They certainly have no say regarding the removal of life support or the issuance of a death certificate. And they have no due process.
She also hopes the case will raise questions in another area: The basic understanding of brain death.
Cheyn Onarecker is a Christian physician and bioethicist. He says very few people really understand what brain death means.
ONARECKER: Brain death is the irreversible—and I think that’s an important point—an irreversible cessation of all functions of the entire brain.
And that’s very different than a coma or a vegetative state.
ONARECKER: What my experience has been over the years as a physician and in the bioethics arena, is that brain death is the same as death. The problem is that when you walk into the room to see a child who is supposed to be dead, you see their chest expanding and moving with the intake and breathing out of the air. You see flushed cheeks and you feel warm skin and they just look like they’re in a deep sleep. And so that’s what makes it difficult.
With regards to parental rights, Onarecker agrees doctors ought to respect the wishes of parents, but he also poses this question.
ONARECKER: What rights do parents have to continue ventilators and other types of treatments if their child is dead? Again, it goes back to our definition of death.
But Onarecker admits not everyone agrees on that definition.
Jahi McMath was 13 years old when doctors declared her brain dead in 2013. Over the next five years, her body kept growing and developing as she went through puberty. Onarecker says nobody expected that.
ONARECKER: It’s always been thought that if a person was brain dead then their body and their bodily systems would began to deteriorate very quickly, even with a ventilator, even with tube feedings and other supports, that bodily systems would begin to deteriorate. And yet this girl, her body continued to grow, for years.
Jahi eventually died in 2018. But her case and others like it are leading some doctors to question mainstream views on brain death.
ONARECKER: So then you have to go, well, is that person really dead?
Alexandra Snyder says the 9th Circuit will consider those questions when making a decision in the Stinson case. She hopes to get a verdict that will reinforce the rights of parents and finally give Israel’s family some resolution.
Reporting for WORLD Radio, I’m Anna Johansen.