A Tragedy Compounded: The Heart-Wrenching Case of Jahi McMath May Have Devastating Consequences to Organ Donation

The creation of uncertainty surrounding a 13-year-old’s “brain death” criteria may have devastating consequences.

01.04.14 10:45 AM ET

The recent extension by a California judge to continue mechanical support to the body of 13 year-old Jahi McMath magnifies the confusion of the term “brain death” and its inherent implications.

This ruling allows the child’s metabolic activity to be supported by external methods including ventilator and circulatory support even though the status of the child has sufficiently been determined to uphold California state law for brain death according to physicians managing the patient as well as independent evaluators and confirmatory tests.

For most states—including California—criteria for death are based on the Uniform Determination of Death Act Criteria and divided into two categories: cardiac death or brain death. Death is considered both legally and clinically to have occurred by either of these two categories.

The demise of Jahi McMath child is heart-wrenching.

A young girl goes to the hospital for an elective tonsillectomy, wakes up normal, but then develops bleeding complications that result in cardiac arrest and prolonged cerebral oxygen deprivation culminating in the current brain death status.

However, the tragedy surrounding this case could extend far beyond unfortunate Jahi and her grief-stricken family.

This case could be devastating to the field of organ transplantation and could yield an incalculable number of senseless preventable deaths.  Currently, over 121,000 patients in the United States alone are on organ transplant waiting lists for organs such as kidneys, livers, heart, lungs, and pancreases. An estimated 6,000 people will die each year waiting for organs that never materialize because of the difficulty in procuring satisfactory healthy organs that maintain a high chance of success to the recipient.

The best chance for a successful organ transplant comes from either a living donor or from organs belonging to an individual declared deceased by brain death. Living donors can only surrender a kidney—and in relatively few cases—a portion of their liver. The patient declared cardiac dead has organs that are sub-optimal due to loss of blood flow to the organs. Most of the successful transplanted organs in the world are from patients declared brain dead. Organs from brain death represent the overwhelming resource for the livers, hearts, lungs, and pancreases transplanted in the world to victims of such diseases as congestive heart failure, pulmonary hypertension, cystic fibrosis, and diabetes.

The major limiting factor precluding donation of these potentially harvestable life-saving organs is refusal of organ donation by families of patients declared to be deceased by brain death criteria.   Importantly, organ donation rates vary by country, race, and ethnicity.

Different studies have tried to ascertain why families would refuse the donation of organs even though the demise of their loved one is both imminent and irreversible.  Some families may not consider organ donations for religious reasons while others may have misperceptions as to how the body of their loved ones will be handled. Others still simply lack consensus among family members to make a decision in a timely manner. The most common factor, as is the case with the McMath family, is refusal to accept the criterion of brain death as finality for their loved one.

In the case of Jahi McMath, the late child’s heart is reportedly spontaneously beating as her organs are being kept alive by a ventilator and other circulatory support.  Her mother has said she hopes for a “miracle” and that she is not convinced her child is dead because the heart is beating.  Her words and actions clearly indicate that she recognizes cardiac death as finality but not brain death despite the fact that both are clinically and legally recognized as such.

The skeleton of this case is not new.

Most intensive care unit physicians, including myself, have numerous cases where a victim was declared brain dead but the family of the individual did not equate brain death with the more familiar cardiac death.  This discrepancy represents a fundamental lack of education regarding the terms to the non-medical community by the medical, legal, and legislative community outside the hospital settings.  These terms being explained to a parent by a stranger after an unspeakable tragedy to their child often falls on deaf ears when a heart rhythm is present on the monitor.  Unsurprisingly, in these circumstances, after the brain death definitions are finally accepted, the topic of organ donation is met with flat refusal.

As this case lingers in the public and more court extensions fail to resolve any definitive endpoint for the body of the irreversibly brain injured Jahi McMath, more confusion regarding the certainty of brain death criteria will proliferate.  The collateral damage will almost certainly lead to more unnecessary deaths for those victims on organ donation waiting lists who almost exclusively rely on the organs of deceased individuals from brain death.  Additionally, for the family of this tragically stricken child, the closure will be more difficult to achieve and the finality all the more horrific when it ultimately manifests.