As a mother who has lost two beloved daughters, my heart goes out to Jahi McMath’s  mother Nailah Winkfield after the recent loss of her daughter after an almost 5 year battle to save her and have California rescind her death certificate after doctors concluded that Jahi was “brain dead”.

Jahi McMath was only 13 years old when she suffered complications after what was supposed to be a routine tonsillectomy and was declared “brain dead”. But instead of just accepting the diagnosis, her mother insisted that Jahi continue to be treated with a ventilator and have a feeding tube in the hope that she could improve.

The California hospital refused and a death certificate was issued for Jahi. The case made national news with influential ethicists like Arthur Caplan, PhD stating about Jahi that “You can’t really feed a corpse” and “She is going to start to decompose.” Other experts like Dr. Alan Shewmon disagreed.

Jahi’s mother went to court but a judge declared that Jahi met California’s criteria for brain death and that the hospital could remove Jahi’s  ventilator. However, the judge stayed the order for awhile so Jahi’s mother could appeal.

Instead and with the help of lawyers and The Terri Schiavo Life & Hope Network ,  Jahi’s mother was able to get her daughter transferred to New Jersey, a state that allows a religious exemption for determining death solely on the basis of the stopping of breathing and heartbeat instead of “brain death”.

After the transfer, Jahi’s  family released videos showing that not only did Jahi’s  body not deteriorate but also that Jahi seemed to be improving and moving her toes.

Sadly, Jahi unexpectedly died June 22, 2018 from excessive bleeding and liver failure after an operation for an intestinal problem. Jahi’s mother says she does not regret the years-long efforts to save her daughter and maintains that “Jahi was able to communicate with me with her hands,” “Sometimes her feet, sometimes her head, but we spoke with her hands.”

A SURPRISING DEVELOPMENT

On April 11, 2018 and before Jahi died, the Harvard Medical School held a conference on “Brain Death and the Controversial Case of Jahi McMath”.

The results of this conference were released just days after Jahi’s  death and, according to The Mercury News, said that:

” Jahi McMath’s  brain showed subtle signs of improvement over the five-year span following the original declaration that she was brain-dead — suggesting a legal ‘resurrection’ from death to life and challenging our widely held understanding of what it means to be officially dead.” (Emphasis added)

And also that Jahi:

“continued to grow, developed breasts, had menstrual cycles, digested food, excreted waste, fought off infections, healed wounds and seemed to respond to basic commands, according to medical testimony provided at a conference about the case.” (Emphasis added)

Dr. Robert Truog, the director of the Harvard Center for Bioethics who organized the conference, has long maintained that the legal definition of brain death as the “irreversible cessation of all functions of the entire brain, including the brain stem” was a  “legal fiction”.

But in a July 2, 2018 Mercury News article “Jahi McMath improved after she was declared brain-dead, doctors say”, Dr. Truog also said that “brain death” does not necessarily signify biological death but merely the extreme end of the spectrum of brain injury and that:

“Even if (“brain dead”) patients are not biologically dead, their profound neurological impairment means that, for legal purposes, they can be treated as if they are dead.” (Emphasis added)

In the meantime, Jahi McMath now has two death certificates- one in California and one in New Jersey-and her family has a malpractice lawsuit against the original hospital.

CONCLUSION

Jahi McMath leaves behind many who mourn her but also the achievement of bringing public attention to the problems with the “brain death” diagnosis.

Unfortunately, as one new bioethicist wrote in a blog “Redefining Death in the Law” after attending the Harvard conference, with the legal concept of “brain death” undermined, death itself may be reduced to merely a personal choice:

“In the absence of a true biological or moral basis for the current conception of brain death, the law ought to reflect that death is largely a values judgement. Individuals should be allowed to state a preference during advanced care planning as to which definition of death most closely aligns with their personal beliefs. Religious accommodations are a step in this direction, but a more respectful and coherent law would give everyone a choice in defining their own death.” (Emphasis added)

Instead, I would submit that what we really should be doing is giving every brain-injured patient time, treatment and a chance to recover as fully as possible.

Now that would be a great legacy for Jahi McMath!