For 50 days, two-year old Israel Stinson occupied a hospital bed in California, where a ventilator forced air into his lungs, keeping oxygen flowing throughout his tiny body. Israel is brain dead, and has been since April 2, 2016. Any diagnosis of brain death is based on three criteria: i) absence of brainstem reflexes (e.g. pupil reaction to light, gag reflex); ii) coma (as evidenced by zero responsiveness); and iii) failure of an apnea test. In Israel’s case, such a clinical and definitive determination was made by no fewer than three different physicians at two different hospitals. Mechanical ventilation did not give Israel life, nor is it keeping him alive. It is merely replacing the function of his lungs, which can no longer function on their own. His heart continues to beat, not because he is alive, but because heart function is not entirely dependent on the brain. Brain death is death; the term simply describes how the death was determined.
California law allows a hospital to disconnect mechanical support in the event of brain death, however Israel’s family waged a legal battle in the United States District Court to block his hospital from doing just that. Court documents indicate that “Plaintiffs are Christians with firm religious beliefs that as long as the heart is beating, Israel is alive.” On May 13th, the court rejected the lawsuit to keep Israel on indefinite “life support” but upheld a temporary restraining order keeping the ventilator in place, thus allowing the family time to appeal. An appeal was filed with the 9th U.S. Circuit Court of Appeals, but that appeal was essentially rendered moot when this past weekend, the family had Israel transferred to another medical facility outside of the United States. Citing privacy, the family’s attorney would not disclose the name of the hospital or its location. Israel’s body remains on a ventilator.
Hard data on the frequency of brain death disputes is evasive, particularly since there is great disparity in media coverage from case to case. Some cases, like that of 13-year old Jahi McMath, have received enough media attention as to have firmly galvanized the public. Thaddeus Pope, a law professor at Mitchell Hamline School of Law, refers to this as the Jahi McMath shadow effect. In an interview last week, Pope stated, “It’s casting a shadow; it has had some impact. I don’t know how to quantify it, but based on my discussion with physicians at a number of hospitals, it does seem there’s an uptick.” Personal injury attorney Chris Dolan, for example, has worked on seven brain death disputes to date, including that of Jahi McMath. In Jahi’s case, the law was leveraged to allow her family to have their daughter transferred to New Jersey where her body remains on a ventilator, more than two years after being declared brain dead. This shift in public perception of the concept of brain death concerns Arthur Caplan, director of the Division of Medical Ethics at New York University School of Medicine:
“It becomes important for the medical field to be responsive to these cases. Not heartless or cruel, but nonetheless try to explain what the concept is, how it’s tested.”
Many doctors consider efforts to ventilate a dead body in the face of all medical evidence to be wrong and unethical. It is indeed telling that not a single hospital facility in the United States would agree to accept Israel’s body after the diagnosis of brain death.
Meanwhile, in a statement Sunday, Israel’s mother Jonee Fonseca declared, “Victory!”.
On Friday May 13th, 2016, U.S. District Judge Kimberly J. Mueller denied a family’s request to keep their brain dead toddler on supportive measures indefinitely. The judge did, however, grant a one-week extension to the order restraining Kaiser Permanente Roseville Medical Center (Kaiser Permanente) from taking the boy off a ventilator.
In early April, two-year-old Israel Stinson suffered an asthma attack, depriving his brain of oxygen for more than forty minutes. After a second attack, and after suffering a cardiac arrest, Israel was placed on a ventilator and declared brain dead. When Kaiser Permanente staff moved to take Israel off the ventilator in accordance with California Health and Safety Code § 1254.4(a), his parents filed an ex parte application with the court to block the staff from disconnecting mechanical support. Israel’s mother argued that it is on the basis of religious grounds, constitutional rights to privacy, and due process as his mother, that she is objecting to the removal of the ventilator. In a heartbreaking video posted recently by Life Legal Defense Foundation, Jonee Fonseca can be seen tickling her little boy and saying “Israel, you have to stop fooling everybody” and “I know you’re going to come out of this, baby.” And therein lies the second tragedy. In the days and weeks following Israel’s placement on a ventilator, the boy has been declared brain dead by no fewer than three physicians at Kaiser Permanente. According to the Uniform Determination of Death Act, brain death is defined by either: (i) irreversible cessation of circulatory and respiratory functions, or (ii) irreversible cessation of all functions of the entire brain, including the brain stem. There is no recovery from brain death. Arthur Caplan, head of the Division of Medical Ethics at New York University, and David Magnus, Professor in Medicine and Biomedical Ethics at Stanford University spoke bluntly about brain death in Time Magazine:
Concepts matter in medicine… Brain death is death. It has nothing to do with being in a coma. It does not refer to a permanent vegetative state. It does not refer to being severely brain damaged.
Caplan and Magnus would like to see the phrases “brain dead” and “life support” stricken from the conversations that take place between hospitals and families as i) the use of “brain dead” gives the impression that the person is not really dead and ii) “removing life-support” sounds a lot like termination of care for a living person. While acknowledging that a brain death diagnosis can be “a devastatingly hard thing to accept”, they argue strongly that such language confuses families and fundamentally lays the groundwork for cases such as this one, and that of Jahi McMath and Marlise Munoz, discussed in a previous blog.
Complicating matters is the assertion by one doctor that there may be hope for little Israel. In a court declaration, Dr. Paul Byrne, a pediatric neonatologist, stated that the toddler “may achieve even complete or nearly complete neurological recovery if he is given proper treatment soon”. Dr. Byrne is a former president of the Catholic Medical Association and current president of a faith-based group called Life Guardian Foundation. According to their website, Life Guardian Foundation is an organization dedicated to the belief that a brain death diagnosis is one promoted by physicians “for the sole purpose of organ transplantation and human medical experimentation”.
Israel’s parents will use the one week extension to take the case to the 9th Circuit U.S. Court of Appeals. They also intend to use the one week reprieve to continue their desperate search for a medical facility in New Jersey that might accommodate the family and agree to take over the boy’s “care”. New Jersey is one of only two states in the United States with a law allowing religious objection to a declaration of death on the basis of neurological criteria. Jahi McMath, for example, lies today in a bed in a New Jersey rental apartment with 24-hour nursing care, as she has for the past two years, while her parents await a ruling on their recent lawsuit to have her death certificate revoked.
Kaiser Permanente is complying with the order to leave Israel on a ventilator until Friday May 20th. A GoFundMe page set up by Fonseca has raised more than $15,300 towards the costs of Israel’s care and transfer.
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.’
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).
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.
Across Canada, there currently exists an ‘opt-in’ framework for organ donation. Also known as ‘express consent’, this framework is defined by the presence of an explicit mechanism (e.g. signing of a donor card or registration with a regional organ donation society) by which one makes their wishes known. Our least populated province may be the first to eschew this system.
As reported on Tuesday, Health P.E.I. is considering a shift towards an ‘opt-out’ donation program in an effort to increase the organ yield in their province. Under such a ‘presumed consent’ scheme, a person is automatically considered an organ donor upon their death, unless the deceased had registered their objection while alive. A presumed consent organ donation program is not a new idea; in France, Spain, Portugal, Greece, Luxembourg, Italy, Austria, Belgium Netherlands, Singapore and Germany, organs and tissues are essentially considered property of the state unless one actively opts out in his/her lifetime. By 2015, Wales hopes to become the first in the UK to join the opt-out trend.
Are there advantages to a presumed consent regime? Don Mills, CEO of Corporate Research Associates summed it aptly: “Most people, if you ask them directly to become an organ donor, they probably will. But if you make them work for it, they’re probably not going to pay too much attention.” A 2006 U.S. meta-analysis concluded that indeed, opt-out programs had a ‘positive and sizeable effect on organ donation rates’. Nonetheless, in 2007, the Citizens Panel on Increasing Organ and Tissue Donation rejected a presumed consent framework as a means by which donation rates in Ontario could be boosted, and referred to such a framework as ‘too passive a method to be a clear statement of an individual’s intent.’
Canada’s donation rate (14.4 donors per million population) is one of the lowest in the developing world, and a report released by the Canadian Institute for Health Information earlier this year showed that across the nation, living and deceased donor rates have stagnated since 2006. 30% of people waiting for an organ transplant in Canada die on the waiting list. Organ donation is a hot topic at present, particularly in the wake of double-lung recipient Hélène Campbell’s herculean efforts in the social media arena to engage both public discussion and personal reflection. This conversation is clearly long overdue. Will P.E.I.’s voice lead the way?
Jennifer Hartman, guest blogger
[In the spirit of full disclosure, the author’s father-in-law is a member of the Health P.E.I. Board.]