Sorrow makes us all children again — destroys all differences of intellect. The wisest know nothing.         - Ralph Waldo Emerson, American author

On December 9, 2013, 13 year old Jahi McMath underwent complex surgery at Children’s Hospital Oakland to remove her tonsils, adenoids, uvula and bony structures in her nose in an effort to alleviate symptoms of sleep apnea. After the surgery, the eighth grader was moved to recovery and was speaking with her family when she began to bleed profusely. Several hours after the hemorrhaging commenced, Jahi went into cardiac arrest and was placed on a mechanical ventilator. Three days later she was declared ‘brain dead’ and a death certificate was issued by the Alameda County coroner.  Hospital officials met with the family and indicated that it was their intent to remove Jahi’s life support measures. At least two physicians had examined Jahi and confirmed that she was unable to breathe on her own, had no blood flow to her brain, and had no sign of electrical activity. In the hospital’s words, there was ‘absolutely no medical possibility that Ms. McMath’s condition (was) reversible or that she will someday recover from death.’

jahi-mcmath-bw

A religious family with strong faith, Jahi’s family considered their daughter to be severely brain-injured, but alive, in the face of the irrefutable medical evidence to the contrary. They remained hopeful for a miracle and successfully launched, and won, a court order barring the hospital from discontinuing mechanical ventilation (without the consent of the family) until 5 p.m. December 30th. A few hours prior to expiration of that court order, the Alameda County Superior Court granted another extension of life support until January 7, 2014 to allow the family to explore the option of transferring Jahi to another facility willing to continue supportive measures. The discord between the family and the hospital was amplified significantly when the hospital refused to perform the surgery necessary for the transfer (tracheotomy and gastric tube implantation) stating (through their attorneys) that it was unethical to perform surgery on a dead person. To wit, once the family identified a suitable recipient facility for their daughter, the hospital released what they referred to as ‘Jahi’s body’ to the coroner, who then released Jahi into the custody of her mother. On the evening of January 6, Jahi was moved by her family to an undisclosed facility where she remains on a ventilator. The most recent update indicates that Jahi is ‘improving’ (according to the family’s attorney) and ‘stabilizing’, having had the tracheotomy and gastrostomy tube procedures.  This update is entirely contradictory to a sworn statement [warning: GRAPHIC] provided by Children’s Hospital Oakland on January 7, regarding the ‘post-mortem deterioration’ of Jahi’s body.

In late November, just three states away in Texas, 33 year old Marlise Munoz, who was 14 weeks pregnant at the time, got up to tend to her young son. Her husband Erick later discovered her unconscious on the floor after she suffered what is suspected to be a pulmonary embolism. Erick performed CPR, and Marlise was rushed to John Peter Smith Hospital in Fort Worth where she was immediately placed on a ventilator. Shortly thereafter, Marlise was declared brain dead. Both Erick and Marlise are paramedics, so they had previously discussed end of life medical decisions, with each other, and with their parents. Marlise had indicated that she opposed efforts to keep her alive if she were ever declared brain-dead. Her family prepared to themselves to say goodbye to her, but were shocked to discover that the hospital would not comply with their (and her prior expressed) wishes to remove life support. Texas Health and Safety Code states “a person may not withdraw or withhold life-sustaining treatment under this subchapter from a pregnant patient”, and thus the hospital states they cannot legally turn off the ventilator. Marlise remains on the 3rd floor of the ICU, connected to life support machines. On January 6, 2014, her fetus entered the 20th week of development, which falls far short of the gestational age ballpark considered to be ‘viable‘ outside the womb. In contrast to Jahi’s family, the Munoz family has not sought legal action against the hospital, however, they have not ruled it out either. It will be another 3-4 weeks before doctors can more accurately assess the health of the fetus (i.e. to what extent, if any, it was compromised by its mother’s pulmonary embolism).

 Erick-and-Marlise-Munoz

What is brain death?

In the United States, according to the Uniform Determination of Death Act, an individual is dead when he or she “has sustained either (1) irreversible cessation of circulatory and respiratory functions, or (2) irreversible cessation of all functions of the entire brain, including the brain stem.”  Under this Act, a specific and comprehensive list of criteria must be met (in accordance with accepted medical standards) in order for a determination of death to be made.

Is being brain dead the same as being in a vegetative state?

No.  Being in a vegetative state differs from being brain dead. The National Institute of Neurological Disorders and Stroke defines a persistent vegetative state as a ‘profound or deep state of unconsciousness’. Individuals in a persistent vegetative state lose their higher brain function but other key functions such as breathing and circulation remain ‘relatively intact’. Brain death is irreversible and there is no recovery from brain death.  Both Jahi and Marlise have been declared brain dead.

Does a hospital have the right to discontinue life support? 

In California, hospitals do have that right. In Jahi’s case, legally speaking, Children’s Hospital Oakland would have had every right to discontinue her mechanical support measures.  The California Health and Safety Code (Section 1254.4) states that once a patient is declared brain dead, a general acute care hospital need only provide ‘a brief period of accommodation’, generally considered to be sufficient time to gather family and next of kin at the patient’s bedside.

In the case of Marlise Munoz, is the law being appropriately applied?

Interesting question.  Here’s what the VP of Communications for JPS Health Network had to say: ”At all times, we will follow the law as it is applicable to health care in the state of Texas. Every day, we have patients and families who must make difficult decisions. Our position remains the same. We follow the law.”  Section 166.049 of the Texas Health and Safety Code states: A person may not withdraw or withhold life-sustaining treatment under this subchapter from a pregnant patient. Several bio-ethics experts (including Dr. Art Caplan, director of medical ethics at NYU Langone Medical Center), however, are suggesting that the hospital is misinterpreting the law. They argue that since Munoz has been declared brain dead, then she cannot possibly, by any definition, be receiving life-sustaining treatment.  Bluntly put, by Caplan: “I think the Texas law cannot apply to the dead.”

Why is the issue of abortion rights being discussed in the context of Marlise Munoz?

Since the fetus has not yet reached the point of viability outside the womb, Marlise Munoz would, under any other circumstances, have a constitutional right to an abortion.

Why do these cases end up before the courts?

End-of-life circumstances are understandably wrought with emotion for the families involved.  Loved ones are caught in a maelstrom of shock, denial, grief, and anger. Questions arise about one’s right to self-determination, expressed wishes, religious tenets, cultural beliefs and the reaches of modern medicine.  Only two states (New York and New Jersey) defer to the patient’s beliefs about the definition of death and require accommodation of religious beliefs and/or moral objections.  In such cases, death can be declared according to traditional cardiorespiratory criteria.

Is the legal landscape much different here in Ontario?

Canadian readers will recall the Hassan Rasouli case which made headlines in October 2013.  In that case, the Supreme Court of Canada ruled (in a 5-2 decision) that doctors cannot unilaterally decide to withdraw life support without the consent of the patient, their family members or a substitute decision maker. In doing so, the Supreme Court essentially directed the parties back to the governing piece of legislation that applies to such disputes, that being the Health Care Consent Act. It is important to note that the medical circumstances surrounding Hassan Rasouli fundamentally differed from those of Jahi McMath and Marlise Munoz in that Mr. Rasouli was deemed to be in a persistent vegetative state, and was never declared brain dead.

Jennifer Hartman  and  Ian M. Hull