Terri Schiavo’s Brother: Jahi McMath’s Case is Also About Parental Rights

Opinion   Bobby Schindler   Jan 17, 2014   |   6:06PM    Washington, DC

Much has been written about Jahi McMath in recent days. The 13 year old Oakland 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 her brain death declaration, the family’s decision to transfer her to another facility, and our involvement, the Terri Schiavo Life & Hope Network, 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. And no one is at risk in today’s health care system more than our medically vulnerable.

Since my family established Terri’s 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 this. We know the tests medical professionals conduct in these catastrophic cases are scientific in nature and quite exacting. But we also know this: We are imperfect beings. 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 believe 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 like Zack Dunlap is impossible to know. But 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 believe 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 care-givers 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 Zack Dunlap or Jahi 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 U.S. 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 a 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 post-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: The Patients Protection and Affordable Care Act will exert increasing pressure on healthcare 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 tortuous 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 last week, 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. They will be overwhelmed with grief and confusion and despair. They will rise one morning to discover they have become polarizing figures feeding what feels like endless news cycles for simply wanting to continue to love and protect a member of their family.

As the Jahi McMath case was playing itself out amidst just such a media frenzy, I received phone calls from three different families in three different parts of the country. 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?