The COVID-19 pandemic has thrown much of what we take for granted on its head. If recent reports are accurate we can potentially add to that list an individual’s right to control their own medical treatment as codified in the Health Care Consent Act (the “HCCA”).
There have been reports in the news recently about advanced planning currently underway about what would happen to the provision of health care if the worst case scenario for COVID-19 should occur and the hospitals are overwhelmed. Included amongst these reports are discussions that certain provisions of the HCCA may temporarily be suspended as part of a new triage system which would allow medical professionals to prioritize who received treatment.
Section 10 of the HCCA codifies that a health care practitioner shall not carry out any “treatment” for a patient unless the patient, or someone authorized on behalf of the patient, has consented to the treatment. The Supreme Court of Canada in Cuthbertson v. Rasouli, 2013 SCC 53, confirmed that “treatment” included the right not to be removed from life support without the patient’s consent even if health practitioners believed that keeping the patient on life support was not in the patient’s best interest. In coming to such a decision the Supreme Court of Canada notes:
“The patient’s autonomy interest — the right to decide what happens to one’s body and one’s life — has historically been viewed as trumping all other interests, including what physicians may think is in the patient’s best interests.”
The proposed changes to the HCCA would appear to be in direct contradiction to the spirit of this statement, allowing health care practitioners to potentially determine treatment without a patient’s consent based off of the triage criteria that may be developed. This “treatment” could potentially include whether to keep a patient on a lifesaving ventilator.
Hopefully the recent downward trend for COVID-19 cases holds and the discussion about any changes to the HCCA remains purely academic. If not however, and changes are made to the HCCA which could remove the requirement to obtain a patient’s consent before implementing “treatment”, you can be certain that litigation would follow. If this should occur it will be interesting to see how the court reconciles any changes to the HCCA with the historic jurisprudence, for as Rasouli notes beginning at paragraph 18 many of the rights that were codified in the HCCA previously existed under the common law, such that any changes to the HCCA alone may not necessarily take these rights away for a patient.
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When sick, elderly or injured patients are hospitalized, the hospital usually has a discussion with the patient or their substitute decision-maker about end-of-life decisions. In particular, there usually is a difficult discussion about the extent to which the patient is to be resuscitated in the event of heart stoppage. Often, the patient wants to be allowed a natural death, with no heroic measures to prolong life, such as intubation or other artificial life supports. Such decisions can be made for a number of reasons, such as the person’s religious beliefs, a desire to avoid the pain and possibly harmful effects of resuscitation efforts, or a concern about quality-of-life post-resuscitation.
(It has been argued that calling the decision a “DNR” is stigmatizing, and should be called an “Allow Natural Death” order instead.)
If a decision to forego resuscitation is made, a “Do Not Resuscitate” (“DNR”) order is completed. The decision is noted on the patient’s file, and often on the whiteboard by the hospital bed.
Difficulties can arise, however, when the person is not hospitalized at the time. If the person is at home and suffers an incident, the attending paramedics may have no way of knowing about any DNR decision. Ontario does not have any form of registry for DNR decisions, so paramedics have no way of searching on-line for DNR decisions.
In an interview with CBC Judy Nairn, Executive Director of Hospice Waterloo Region, suggested that people at home with concerns about their DNR order being honoured should put it on their fridge door: paramedics always look their first.
The news report referred to a 67-year-old woman who was so concerned that her DNR wishes be respected that she wears her DNR request around her neck.
It is not enough just to make the decision about resuscitation efforts. It is important to take steps to ensure that the decision, once made, is respected and acted upon.
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 For this reason, the frail and elderly should also always keep contact information and details of any medical conditions and medications on their fridge.
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.
Listen to the Health Care Consent Act.
This week on Hull on Estates, Megan Connolly and Sean Graham review the Golubchuk case out of Manitoba and discuss the Health Care Consent Act of Ontario.