Much has been written about Jahi McMath in recent days. The 13-year-old Oakland, Calif., girl underwent surgery Dec. 9 to remove her tonsils. She was declared “brain-dead” after going into cardiac arrest.
Since that time, experts have opined on the ethics of the brain-death declaration, the family’s decision to transfer her to another facility, and the involvement of the Terri Schiavo Life & Hope Network in helping the family.
First, let me make it clear that our organization does not initiate contact with victims and their families or with the media. We did not contact the McMaths. We did not contact any media outlet.
We were contacted, and we responded. We respond because that is our mission — to provide aid, comfort and support for vulnerable persons, and to speak truth to power. No one faces more risk in today’s health care system than our medically vulnerable.
Since my family established the Terri Schiavo Life & Hope Network in response to my sister’s death in 2005, we have been involved in hundreds of situations with families who find themselves in life-or-death situations.
In every case, we put our resources at the service of the family. We share medical, legal and other needed resources. We provide emotional solidarity in their darkest moments and, always, prayers of support.
Second, we are not medical professionals. We do not know if Jahi will improve. We have no way of knowing that. We know the tests medical professionals conduct in these catastrophic cases are scientific in nature and quite exacting. We also know this: Human beings are imperfect. We can and do make mistakes; this includes medical professionals. There have been extraordinary instances of this that are breathtaking to behold. Take Zack Dunlap, for example. He experienced a catastrophic brain injury and was declared brain-dead. The family was not convinced. Two months later, Zack Dunlap walked out of that hospital. There are other examples.
Is Jahi McMath capable of being neurologically rehabilitated? Regardless, we think there is an even more basic question that must be answered first: Who has primacy in a life-and-death matter like this — the hospital or her parents?
Jahi’s life has been entrusted to her parents. They are her legal guardians. If they believe she is alive, they ought to have the right to have her transferred to another acute-care facility — if they can find one that will take her.
They petitioned the courts for more time to assert their rights with the hospital. In the end, they prevailed, and the hospital agreed, and her parents had her transferred to another facility, where she is now a patient.
Whether Jahi will walk out of this facility the way Mr. Dunlap did is impossible to know. A more fundamental precedent has been established: A victim’s loved ones have a basic right to alternative diagnosis and, possibly, care — if the originating hospital is unwilling to absorb additional expenses to sustain a life they think has ended.
This development will become increasingly significant in the days to come.
Finally, as a society, we are headed into uncharted territory. Demography and technology will increasingly force difficult and unwanted decisions on caregivers and loved ones.
The difficulty in making a pinpoint diagnosis in complex neurological matters, the soaring expense of life-sustaining medical technology, and the lucrative financial incentives to harvest the organs of a deceased Mr. Dunlap or Miss McMath will ultimately propel this issue into the forefront of public consciousness and discourse.
Perhaps not surprisingly, the current “procurement” market for human tissues and organs in the United States is quite large and driven by insufficient supply and heavy demand. The Milliman Report publishes the “going rate” for each of 12 different tissues and organs in the human body. A heart, for instance, goes for close to $80,000; a kidney, $65,000; a lung, $70,000.
If all 12 tissues and organs could be harvested from a single patient declared brain-dead, however unlikely, their total value would exceed a half-million dollars.
These revenues, of course, do not include the additional revenues generated from the transplant itself, pre- and post-transplant care, and the pharmaceuticals required after surgery.
To what degree any given hospital might be influenced by any and all of this, no one can say with certainty. What can be said with certainty is this: Obamacare will exert increasing pressure on health care institutions to justify the amount and quality of care for the most vulnerable patients.
Another factor: There is mass confusion about what constitutes extraordinary medical treatment and what is ordinary and obligatory medical treatment. In all 50 states, basic nutrition and hydration is now considered extraordinary medical treatment. My sister, Terri, did not die because her ventilator was removed. She died of dehydration and starvation close to 14 torturous days and nights after her feeding tube supplying her food and water was removed by court order.
Had my parents had the option the McMaths were given, Terri would be alive today and, under the right physiatrist and protocols, they could have improved her lifestyle, commonly mislabeled quality of life.
How much Terri could have improved, I cannot say. We will simply never know. But what we do know is a growing number of patients who have God-given value and dignity will find themselves in horrific circumstances in the coming years. Their loved ones will suffer in a way few of us could ever know.
Recently, I received phone calls from three different families. Each family said they were in the same position as the McMaths. Hospitals were telling them their loved one was brain-dead, and the hospital was no longer willing to care for them. Each family said they saw their loved one respond in some manner to their attempts to communicate with them.
What would you do?
Bobby Schindler is the executive director of the Terri Schiavo Life & Hope Network. He is the brother of Terri Schiavo.