January 18, 2014
Whatever may be our impressions or biases about the Jahi McMath “brain-death” matter, we ought to consider certain responsibilities that come with exploring or taking a side in any such controversy of potential importance to society. For instance, societal benefits may accrue with public support or defence of encompassing moral values, whether around the pursuit of eliminating injustice, or around the pursuit of conducting social or scientific feats. All three of these pursuits were heavily engaged in the Jahi McMath matter.
We also need to duly consider whatever truths and good ideas we come upon. Never should any important fact be dismissed or buried, particularly such facts as those offering a “short-cut,” overarching interpretation to a matter. Therein is a key and vital component of the Jahi McMath debate, a key fact that, strangely, has been almost totally ignored in the broader public dialogue about this young girl in hospital. I am referring to the restored ability of Jahi’s body to self-regulate her core body temperature.
This is deeply significant, because the human body relies upon the hypothalamus portion of the brain to conduct the temperature-regulating function. More to the point, Jahi’s brain was still functioning to a notable degree, at least during part of the material time of the famous/infamous “brain death” declaration. And her brain would continue to function for at least as long as she is still able to self-regulate her own body temperature. To wit, Jahi’s brain, then, obviously did not fulfill “irreversible cessation of all functions of the entire brain,” the wording of the Uniform Determination of Death Act (UDDA).
While it is true that Jahi was not self-regulating her body temperature for most of December, a sign of lost hypothalamic function, there is also the later, additional fact in that regard… the fact that keeps getting publicly ignored. Direct observers, including at least one doctor, had noted in early January that Jahi had actually regained her ability to self-regulate core body temperature. This empirical “data point” is rendered increasingly significant in its dynamic of sudden reappearance. In other words, that function of the brain had actually restored itself to working order, and did so weeks after that particular brain function had earlier supposedly stopped. That is remarkable. Such a dynamic, or trend, of “restored” brain function extraordinarily, scientifically, is not consistent with “irreversible cessation of all functions of the entire brain,” but rather suggests a degree of recovery from brain injury. And that recovery is in spite of some extremely poor care this young girl was being given at the first hospital facility, where they insisted and persisted in withholding needed interventions before and even after there were such signs of restored brain activity. The “poor care” I am referring to here is the prolonged starvation; the protracted and unnecessarily repeated apnea testing conducted in a potentially deleterious manner; the deprivation of needed thyroid medication; refusing to treat an adrenal gland problem that arose; et cetera.
Whether or not Jahi’s hypothalamus, part of her brain, continues to function; whether her brain further heals or degrades over the coming period; whether or not the first hospital had further harmed her recovery chances in their practice of starving and depriving her – irrespective of all of that – Jahi and her family still deserved the chance to explore and become informed about some of the possibilities that other doctors believed to exist for this beloved family member. Given that what the family wanted was simply the reasonable choice of obtaining alternate expert opinions at an unrelated facility, in order to more assuredly gain closure one way or the other, then that is what they should have received. It is what they needed as a family. It was a situation that called for profound application of family centered care principles. But that is not what they got. This family, like all of us, would also have deserved for such to proceed in a complete, open, honest, moral, and respectful medical environment. But that was also not entirely the kind of scientific and social environment that Jahi and her family were immersed in, at that first hospital.
Instead, they were trapped in what really amounted to an institutional war zone, caught, against their will, even “behind enemy lines,” as it were; right upon the opposition’s own turf of nearly total control. How terrifying this would be for any family laden with remnant, unanswered questions about the future potential of their loved one. Truly, this American family was being oppressively restricted and confined away from their rightful, personally-chosen location and means of resolution/closure. They simply wanted an alternate hospital willing to give this beloved daughter/granddaughter/niece one last chance and one more set of experts. They were caught in a zoo of lost dignity, battling for basic human rights, instead of being able to just focus on their loved one’s medical issues. By no stretch of imagination was “family centered care” being practiced or honoured there, at that first hospital. No, that was, rather, a disgrace of avoidance and misapplication of family centered care principles.
In the very least, if Jahi is to die, it must not have been at that particular hospital. And if she is to have any reasonable chance of healing and life, then she really did need to get to a different facility that would treat her and her family rightly, with a fresh start, away from the war zone, away from the overbearing and intensely distracting ground zero. And that is, thankfully, what has happened. It is something all of us should respect, as well. At least, now, Jahi and her family, at the new facility, are being accorded decency of medical and social practice. However Jahi’s life goes from here forward, it was a worthy right to fight for and pursue, both scientifically and socially.
© S. N. Sansalone and Paul A. Byrne, M.D