Breningstall GN. Defining death: when physicians and family
differ. Pediatr
Neurol. 2014 Oct;51(4):476-7.
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This standard definition of death by neurologic criteria was
adopted in every state, but only 36 incorporated the complete language of the
UDDA into their definitions of death.
“There is ongoing confusion about death by neurologic
criteria—medical standards used to determine it vary, public acceptance of it
is inconsistent, and responses to family objections to it have ranged from
continuation of organ support indefinitely to unilateral discontinuation of
organ support,” noted the authors of the new proposal, led by Ariane Lewis, MD,
associate professor in the departments of neurology and neurosurgery at NYU
Langone Health in New York, who is also a co-author of the AAN position
statement. “Because of medicolegal variations, a person could be considered
‘dead’ in one state and ‘not dead’ in another.”…
Two cases now moving through the courts, Fonseca vs. Smith
and Lowry vs. Beaumont Health System, seek to challenge the constitutionality
of the UDDA. In the first case, Jonee Fonseca's baby son, Israel Stinson, was
pronounced brain dead by physicians at several hospitals after an asthma attack
in 2016. The hospitals' decisions were upheld by the US District Court in 2017,
and Fonseca appealed to the 9th US Circuit Court of Appeals, where arguments
were held in December 2019. Fonseca's attorney argued that the California
Uniform Determination of Death Act gives doctors the ability to act as “both
judge and executioner.”
In the second case, LaShauna Lowry sought a court order to
prevent Beaumont Health System in Michigan from removing her teenage son, Titus
Cromer Jr., from organ support after he experienced an undisclosed brain injury
in October 2019. Testing showed no brain activity, including in the brainstem,
and Beaumont physicians pronounced Cromer dead on October 24. He has remained
on organ support since then as motions have made their way through the court
system; at press time, the case was before the US District Court in Detroit.
Several states, including Arizona, South Dakota, Kansas and
Missouri, have recently passed versions of “Simon's Law,” which requires
parental notification before a do-not-resuscitate order is placed on a minor's
medical chart. It also gives a parent or legal guardian the right to transfer
the child to another facility if they disagree with the order. (The law
originated in Missouri after the death of 3-month-old Simon Crosier in 2010.)
Meanwhile, a Michigan lawmaker, Joseph Bellino, is drafting
legislation that would take this law one step further. Dubbed “Bobby's Law”
after Bobby Reyes, who was declared brain dead after an asthma attack in
September 2019, it would also allow parents or a legal guardian to defer for an
unspecified period the apnea test required to determine brain death.
“These legal maneuvers represent an exercise in false hope,”
said James A. Russell, DO, FAAN, of Lahey Hospital and Medical Center in
Burlington, MA, past chair of AAN's Ethics, Law and Humanities Committee, and a
co-author of the AAN position statement.
“Death is a uniform biological reality that occurs from
irreversible loss of either circulatory function or brain,” Dr. Russell said.
“In the case of circulatory arrest, at some point, medical
professionals who are trying to resuscitate the patient recognize that the
ability of the heart to perfuse other organs is irreversibly lost and declare
that patient dead. They are not required to identify that every last cell in
the heart is dead, nor do they have a means of doing so, but they know that
heart will never be restored to its normal state and without artificial
support, the patient will die.
“Consent from the family is not required before the
resuscitation team stops resuscitating that patient. But with neurologic death,
these proposals seek to handcuff the medical profession from making a similar
determination that the brain as a whole has ceased to function irreversibly.”
Nevertheless, these lawsuits and legislative efforts have
highlighted some deficiencies with the UDDA, said Dr. Lewis—and that's what the
proposed revised UDDA (RUDDA) seeks to remedy, both with a more detailed definition
of brain death as well as additional guidance regarding how such determinations
must be made, and what is required in terms of family notification prior to
reaching a determination of brain death. [See “Proposed Revised Uniform
Determination of Death Act.”]
“The UDDA's current language stipulates that declaring death
by neurologic criteria requires irreversible cessation of all functions of the
brain, including the brainstem,” Dr. Lewis explained.
“Some people argue that patients who have residual hormonal
functions, such as menstruation and maintaining a normal salt-water balance in
the body, which are regulated in part by hormones released from the brain,
should not be able to be legally declared dead by neurologic criteria.”
That was part of the argument posed by the family of Jahi
McMath, who entered puberty and began menstruating after being declared brain
dead. In fact, multiple studies have demonstrated that hypothalamic and
pituitary functions persist in 10-91 percent of people declared dead by
neurologic criteria.
“We don't require every cardiac cell be dead for the organ
as a whole to be dead,” Dr. Lewis said. “In some brain-dead individuals, there
are nests of cells that do retain viability for a short period. There's a
distinction between the death of every cell and the death of a brain as a
whole, even if some functions are still maintained for a time.”
“That's why we propose making the definition clearer as to
what brain function must be lost, rather than using the vague phrase ‘all functions,’”
she said.
The UDDA also does not specify which medical standards
should be used to determine death by neurologic criteria; under the RUDDA, the
guidelines of the AAN and those jointly developed by the Society of Critical
Care Medicine (SCCM), American Academy of Pediatrics (AAP), and Child Neurology
Society (CNS) are designated as the accepted medical standards, but state
boards of medicine have the authority to review revisions of their guidelines
as needed.
Finally, since the UDDA does not address whether consent is
required before a determination of death by neurologic criteria, court rulings
on this question have been inconsistent. The RUDDA aims for consistency by
stating that such notification should be pursued but is not mandatory. “Our hope
is that the RUDDA will gain traction and be formalized into law by individual
states,” said Dr. Lewis…
In 2017, Nevada amended its UDDA law and became the first
state in the nation to stipulate that a determination of death is a clinical
decision that does not require familial consent and that guidelines issued by
the AAN in 2010 for adults and the SCCM/AAP/CNS guidelines issued in 2011 for
children are the appropriate standard for determining neurologic death…
It's not just states that are inconsistent. Dr. Greer noted
that hospitals still vary in their adoption of the AAN's guidelines on
determination of death by neurologic criteria. In a 2016 review published in
JAMA Neurology, evaluating 508 unique hospital policies representing the
majority of hospitals in the United States that would be eligible and equipped
to evaluate brain death in a patient, significant variability was found across
all five categories of data, such as specifying all aspects of the clinical
examination and apnea testing, and specifying appropriate ancillary tests and
how they are to be performed…
Dr. Russell noted that significant harm can come from
continuing to maintain neurologically dead patients on organ support.
“First, if that patient has been assessed for brain death
compliant with these recognized criteria, there has never been a case where
such a patient has woken up and started breathing again. There is no chance.
That's false hope, which is harmful not only to the family but to the medical
team. There is a tremendous amount of moral distress in ICUs among nursing
staff forced to care for people whom they recognize are dead. We are also
protracting the grief process for the family and denying them the closure that
has to occur.”
Proposed Revised Uniform Determination of Death Act
The proposal for the Uniform Determination of Death Act
stipulates that:
An individual who has sustained either (1) irreversible
cessation of circulatory and respiratory functions, or (2) irreversible
cessation of functions of the entire brain, including the brainstem, leading to
unresponsive coma with loss of capacity for consciousness, brainstem areflexia
and the inability to breathe spontaneously, is dead.
(b) A determination of death must be made in accordance with
the applicable guidelines set forth in (1) ‘Evidence-based guideline update:
determining brain death in adults: report of the quality standards subcommittee
of the American Academy of Neurology,’ published June 8, 2010, by the American
Academy of Neurology, or (2) ‘Guidelines for the determination of brain death
in infants and children: an update of the 1987 task force recommendations,’
published January 27, 2012 by the Society of Critical Care Medicine, American
Academy of Pediatrics and Child Neurology Society, or (3) subsequent revisions
of these guidelines that are recognized by the Board of Medicine to be accepted
medical standards.
(c) Reasonable efforts should be made to notify a patient's
legally authorized decision-maker before performing a determination of death by
neurologic criteria, but consent is not required to initiate such an
evaluation.
https://journals.lww.com/neurotodayonline/Fulltext/2020/01090/Dead_in_California,_Alive_in_New_Jersey_.7.aspx
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