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.
In Roseville, California, Jonee Fonseca and Nate Stinson await a decision by a federal judge with respect to the fate of their little son. On April 2nd 2016, two year old Israel Stinson suffered an asthma attack, depriving his brain of oxygen for more than forty minutes. He was seen in the E.R., admitted to hospital, suffered a second attack, lapsed into a coma, and was placed on a ventilator. Days later, he was declared brain dead by doctors at Kaiser Permanente Center in Sacramento (Kaiser Permanente). 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.”
California Health and Safety Code § 1254.4(a), mandates that “after a reasonably brief period of accommodation”, a hospital may shut down the cardiopulmonary equipment that keeps the heart of a brain dead patient beating. However, when Kaiser Permanente moved to take Israel off the ventilator, his parents filed an ex parte application with the court to block the medical center from disconnecting this supportive measure. Israel’s mother argued that it is on the basis of religious grounds that she is objecting to the removal of the ventilator; “We won’t give up. God won’t give up. Who is a doctor to go against God?” The ex parte application further seeks an order compelling placement of a tracheostomy tube and gastric feeding tube so that the toddler can be provided respiratory support and nutrition. Ultimately, the parents hope to have Israel transferred to a medical facility in New Jersey. Why New Jersey? Unlike other states, the New Jersey Declaration of Death Act provides that “the death of an individual shall not be declared upon the basis of neurological criteria when … such a declaration would violate the personal religious beliefs of the individual.” Such religious beliefs subscribe to the principle that the heart is the sole indicator of death, even if that heart is artificially supported by mechanical means. On April 30th, the United States District Court issued a temporary restraining order preventing Kaiser Permanente from removing Israel’s ventilator. On May 2nd, an extension to that order was granted; supportive measures must be maintained until May 11th, at which time another hearing will be held.
If any of the facts of this case seem tragically familiar, it is because they echo the case of young Jahi McMath. You may recall Jahi, the 13 year old girl whose complications after a routine tonsillectomy rendered her brain dead in a California hospital in 2014. Jahi’s parents would not accept the declaration of brain death by their daughter’s hospital, fought to have mechanical ventilation continued, and successfully won the right to have her body transferred to a facility that agreed to sustain supportive measures (ventilator, tracheostomy and gastric feeding tube). To this day, Jahi remains in a hospital bed in New Jersey.
Kaiser Permanente has indicated that they will comply with the decision of the federal judge next week.
Organ donation rates across Canada are dismal, really. Canada consistently ranks in the bottom half of industrialized countries where transplants are performed.
Many factors affect donation and procurement rates. Spain, Portugal, France and Austria have high organ donation rates because these countries have adopted a ‘presumed consent’ framework whereby organs and tissues are essentially considered property of the state unless one actively opts out during his/her lifetime. Why does the U.S. outperform Canada here? One would not necessarily anticipate such a disparity in donor rates between Canada and the United States, since we seemingly enjoy healthcare practices of similar quality. Be that as it may, what sets the size of our donor pool apart is actually our lower rates of road accident and gunshot wound fatalities. Clearly some contributing factors can be controlled and others simply cannot. In order for Canada to move the needle on donor rates in any meaningful way, individual provinces are going to have to craft bold strategies. In this regard, Nova Scotia will be first out of the gate.
Four years ago, in Nova Scotia, Bill 121: An Act Respecting Human Organ and Tissue Donation was passed by the (then) NDP government, but was never proclaimed. Last week, however, NS Health and Wellness Minister Leo Glavine indicated that Bill 121 will be proclaimed in the coming months. Once enacted, the language of the Bill would eliminate the right of family members to veto organ donation where consent has already been given. Consent to donate one’s organs will thus be binding. Bound, by law. This framework is referred to as ‘first person consent‘. People are often surprised to discover that in Canada, there are currently no policies in place to prevent a family from halting the organ donation process.
The ability of family members to veto a donation has long been one of the more hotly debated impediments to higher donor rates, and thus the proclamation of Bill 121 will mark a pivotal shift in policy. The statistics are difficult to pin down, but approximately 10% of families refuse to transplant a registered donor’s organs. Five thousand Canadians are in queue for an organ donation, 250 of whom will die this year, waiting. Every potential donation counts. Aside from shrinking the donor pool, allowing families the power to veto treads on both moral and ethical turf. On the face of it, not accepting a donor’s gift is a violation of their autonomy. Further, some firmly believe that doctors have a professional obligation to honour a prior expressed wish to donate. According to bioethicist David Shaw:
To respect a family’s veto when the patient was on the organ donor register is a failure of moral imagination that leads to a violation of the dead person’s wishes and causes the death of several people (and all the sorrow consequent to this), and many family members who stop donation come to regret their decision.
It will be interesting to see if the rest of Canada will follow Nova Scotia’s legislative lead. With a rate of only 15 deceased donations per million population, every increment of effort to narrow the gap between organ supply and demand should be applauded, and loudly so. Kudos, Nova Scotia.
Jennifer Hartman, guest blogger
To register your consent to donate: