Remember the Humanity of Jahi McMath

First appeared in TIME, available here.

The tragic facts surrounding 13 year-old Jahi McMath are now well known. She underwent routine surgery at Children’s Hospital Oakland December 9 for removal of her tonsils and some other tissue to alleviate her sleep apnea. After surgery she was alert and sitting up in bed, chatting with her family. However, as her family watched, Jahi began bleeding profusely, the blood on her gown matching the pink popsicle she held in her hand. The bleeding went on for several hours before she went into cardiac arrest and was medically declared brain dead on December 12.

Ever since, Jahi’s family has been locked in a battle of attrition with Oakland Children’s: The hospital says she’s dead; her family says she’s severely brain-injured.

Oakland Children’s position is brutally cold: Because Jahi has been declared brain-dead, she is therefore completely dead, only staying warm via the life-giving oxygen being pumped into her system by a mechanical ventilator. The hospital leadership has taken every opportunity to make clear that they are following California’s legal definition of brain death to the letter. For the hospital, Jahi is a hollow mass of flesh devoid of meaning; the administration has refused to refer to her as a child of a loving family. Instead, they have said that she is a “dead body” and a “deceased person.” Hospital spokesman Sam Singer rubbed even more salt into the wound, noting that “no amount of hope, prayer, or medical procedures will bring her back.”

The hard-nosed corporate line is very simple: Jahi is a mere shell, bereft of humanity, and using up precious resources only because of the naïve and uninformed hopes of her loving but pesky family.

Unsurprisingly, Jahi’s family sees things differently. They watched a vibrant young teenager morph into a starkly silent child, her hopes and potential dashed by a relatively simple medical procedure. They have also made clear that despite her current condition, Jahi is still their beloved child, not some washed-up husk ready for disposal. They have also been clear that Jahi is perhaps not as “dead” as Oakland Children’s Hospital would have us all believe. Jahi’s mother and several family members report that Jahi has responded to familiar voices. They have made the case that at the very least Jahi’s medical condition should be given some time before a radical hospital decision deprives her of her life for good.

For the hospital, Jahi’s medical diagnosis is certain and final, a diagnosis they want to leverage to close the book on a public relations crisis that has already badly diminished the reputation of the facility.

It’s not that simple, however, because no medical diagnosis is absolute. The research literature is rife with clinically observed instances of patients outstripping their physicians’ dire predictions by months, years, and even decades.

And that includes diagnoses of brain death.

For example, in 2008 Zack Dunlap was declared brain-dead after an ATV accident based on exactly the same criterion offered in Jahi’s case: a PET scan revealed that he had no blood flowing to his brain. His body was prepared for organ harvesting, but alert family members were able to elicit behavioral signs that showed he was anything but brain dead. Forty-eight days later, Zack walked out of a rehab center and went home.

Colleen Burns was another example of how fallible a medical diagnosis of brain death can be. Admitted to a hospital in Syracuse, New York, after a drug overdose, she, like Zack Dunlap, was declared brain dead and prepared for organ harvesting. She woke up on the operating table shortly before the operation began, and was discharged shortly thereafter.

In Jahi’s case, late Friday afternoon, Alameda County Superior Judge Evelio Grillo brokered an agreement allowing for Jahi to be transferred with her ventilator to another facility where she will be cared for as a brain-injured, rather than a “dead” patient. Oakland Children’s was quick to stipulate that they would not be responsible for anything that befell Jahi during the move. One wonders why they are so adamant seeing that, for their purposes, Jahi is already a corpse.

One thing is abundantly clear: The McMath case presents a stark scenario of the medical community running rough-shod over the wishes of parents and other loved ones when it comes to needed and necessary medical treatment. In the trenches of medical futility warfare, cases like these are often overlooked. Our experience, similar to those of Jahi and her family, is that people with severe brain injuries are treated like second class citizens, often being denied the treatment, care, and love that their humanity demands.

In our current healthcare climate, bureaucratic medical decision-making by corporate-medico fiat is likely to increase, making it likely that we will increasingly lose the Zack Dunlaps and Colleen Burnses of the world.