Truog RD. Defining Death-Making Sense of the Case of Jahi
McMath. JAMA. 2018 Apr 9. doi: 10.1001/jama.2018.3441.
Jahi McMath is currently a 17-year-old girl who experienced
a massive hemorrhage after a complex tonsillectomy in 2013, leaving her
brain-dead. Her family refused to accept the diagnosis and she was transferred
to New Jersey, which by law prohibits physicians from declaring death by
neurologic criteria when this would violate the religious beliefs of the
patient. Now, more than 4 years after she was issued a death certificate in
California, she is being kept biologically alive in an apartment in New Jersey,
supported by a ventilator, tube feedings, and supplemental hormones. She has
continued to grow and develop, even progressing through puberty. Her case has
led many to wonder: How is it that society can consider a growing adolescent,
albeit one with a devastating brain injury who needs a ventilator to breathe,
to be “dead” in any commonsense meaning of the term?
To make sense of the case of Jahi McMath, it is important to
examine the relationship between biology and law in medical practice. All brain
injury can be described in terms of a spectrum of severity. The state termed
“brain death” is near the very bottom of that spectrum, representing the loss
of most—but not necessarily all—of the functions of the brain. This point on
the spectrum is characterized by “irreversible apneic coma,” that is, the
patient’s brain injury is severe enough to render him or her permanently
unconscious and ventilator dependent. The Uniform Determination of Death Act
(UDDA), adopted in 1981, draws a bright line at this point on the spectrum,
such that patients functioning below that line are legally dead and those
functioning above that line are legally alive.
Although legal definitions are typically defined by bright
lines, biology tends to be continuous. Consider, for example, that all citizens
acquire a completely new legal status on their 18th birthday, with virtually
all of the rights, privileges, and obligations of adulthood. Yet from a
biological or psychological perspective, not much has typically changed from
the day before. Similarly, people are considered legally blind when their
eyesight is 20/200 or worse, although visual loss usually is not all-or-none
but rather occurs across a continuous spectrum of severity.
Failure to appreciate the difference between bright legal
lines and the continuous spectrum of biological functioning underlies the
confusion over Jahi McMath. Clinicians sometimes care for severely
brain-injured children who are functioning slightly above the line that defines
brain death. Many of these patients are in a vegetative state; some are
ventilator dependent but do not meet all of the requirements of the diagnosis
of brain death. These patients are legally alive, they are treated with life
support when they become ill, and they may survive for many years. It should be
no surprise then, that an individual like Jahi McMath, a patient who is
functioning just below that line, may be biologically very similar to these
patients and likewise may—with the necessary medical support—live for many
years.
If this is the case, why are there not more patients like
Jahi McMath? The answer is that the diagnosis of brain death functions as a
self-fulfilling prophecy. In almost all cases, the diagnosis of brain death is
quickly followed by removal of the ventilator or by organ donation, which
invariably leads to cardiorespiratory death. But if life support is continued,
patients like McMath may live for many years (the longest reported case of
survival after careful determination of brain death is more than 20 years).
Cases like that of Jahi McMath cause great angst because
they seem to cast doubt on the ability of the medical profession to distinguish
between the living and the dead. The confusion disappears, however, with the
recognition that law and biology function differently. The law necessarily
depends on bright-line determinations to standardize many important societal
distinctions, such as when a person becomes an adult, when a person is blind,
and when a person is dead.
However, failure to appreciate this distinction has also led
to some factually inaccurate comments from prominent bioethicists about the
McMath case (“There isn’t any likelihood that she’s gonna survive very long,”
“She is going to start to decompose,” and “You can’t really feed a corpse”).
Comments like these, in the face of clear evidence to the contrary, erode the
confidence of the public in the truthfulness and candor of the medical
profession.
The UDDA has served its purpose well. By drawing a bright
line at the level of permanent unconsciousness and ventilator dependence, the
UDDA has defined when a person should be considered dead, making it permissible
for the person to be an organ donor if they wish and making it permissible for
the health care system to refuse to continue to provide the patient with life
support. Like many other legal bright lines, it is a social construction based
on biological reality but not completely defined by it. Although the line is
necessarily somewhat arbitrary, it represents a meaningful threshold, which
over several decades has had widespread societal acceptance.
As with many other laws, decisions need to be made about how
to treat those who hold religious or principled objections to the legal
standard. In the case of brain death, New Jersey has carved out a religious
exemption, and some other states require that these objections be given
“reasonable accommodation.” But it would be a mistake to believe that the case
of Jahi McMath and others like it present a fundamental challenge to the
diagnosis of death by neurologic criteria. All that is required is more clarity
about how the continuous nature of biological functioning is translated into
the requirements of the law.
No comments:
Post a Comment