In
one way, the cases are polar opposites: The parents of Jahi McMath in
Oakland, California, have fought to keep their daughter connected to a
ventilator, while the parents and husband of Marlise Munoz in Fort
Worth, Texas, want desperately to turn the machine off. In another way,
the cases are identical: Both families have been shocked to learn that a
loved one was declared brain-dead — and that hospital officials defied
the family's wishes for treatment.
Their wrenching stories
raise questions about how brain death is determined, and who has the
right to decide how such patients are treated.
"These cases are
quite different from those we've known in the past," like Karen Ann
Quinlan, Nancy Cruzan or Terri Schiavo, said Dr Joseph J Fins, director
of the medical ethics division at NewYork-Presbyterian/Weill Cornell
Hospital. He explained: "Those patients could all breathe without a
ventilator. They were in a vegetative state, not brain-dead, and that
distinction makes all the difference."
A person who has received a
brain-death
diagnosis cannot breathe on his or her own and is legally dead, in all
50 states. In two states, New York and New Jersey, that hospitals must
take into account the family's religious or moral views in deciding how
to proceed in such cases. In all others, including California and Texas,
hospitals are not required to consult the family in how to terminate
care.
Doctors at Children's Hospital in Oakland pronounced
Jahi, 13, brain-dead on December 9. She developed complications after
surgery for sleep apnea and lost a large amount of blood. Munoz, 33, got
the diagnosis at John Peter Smith Hospital in Fort Worth after she
collapsed from a blood clot when she was 14 weeks pregnant. The
hospital, citing a state law, refuses to remove the ventilator because
it would harm the fetus, now in its 20th week.
The two cases are poignant in part because of a biological quirk of the body: The patients' hearts continue to beat.
Hearts have their own pacemaker, and with ventilation, the heart can
continue to beat for days, even up to a week. But with more aggressive
care, it can last months and longer after brain death, experts say,
depending on the health of the patient and how much treatment is
provided.
That ventilation saved the fetus in the Munoz case,
and probably in the nick of time, said Dr R Phillips Heine, director of
maternal and fetal medicine at Duke University's medical school. The
diminished blood flow to the fetus when the mother collapsed — she is
thought to have been passed out for about an hour before receiving care —
"may lead to adverse effects over time, but we have no way to predict
that," Heine said.
A prolonged heartbeat has created the
perception of life for Jahi's family, while for Munoz's relatives it
represents a denial of the right to die.
"The way I've described this state is that a part of the organism is still
alive,
obviously, but the organism as a whole — the human being — is gone,"
said Dr James L Bernat, the Louis and Ruth Frank professor of
Neuroscience at Dartmouth's medical school.
Diagnosing a brain
as "dead" is a matter of determining the function of its most primitive
area, the brain stem. The brain stem, the plug of neural tissue at the
base where the spinal cord enters the skull, is the body's plant
manager, sustaining systems like muscle tone, metabolic equilibrium and
ventilation.
Testing its function requires some expertise,
because people with severe brain injuries are often unresponsive and
appear brain-dead when they are not. A coma, for instance, is an
unresponsive state that often represents a period of recovery for the
brain stem and other areas.
People generally emerge from a coma
within two to three weeks after their injury. If they not, they may
enter a vegetative state, in which the brain stem is functioning but
higher brain areas are shut down, or what is called a minimally
conscious state — in which a patient is occasionally responsive, but not
predictably. People who emerge from a vegetative state are thought to
pass through a minimally conscious stage before becoming consciously
aware.
To determine brain death, four elements are needed,
experts said. First, the doctor must rule out other possible
explanations for the unresponsive state, like anesthesia, diabetic coma
or hypothermia. An injury must also be established, like a blow to the
head or blood loss.
Doctors then test the function of so-called
cranial nerves, including one that runs to the eye and activates
blinking; another in the throat that causes gagging; and a third in the
inner ear that allows the eyes to focus on an object when the head is
moving. Each of these engages the brain stem. If touching the person's
cornea with a Q-tip does not trigger a blink, or touching the back of
the throat brings no gagging, the brain stem is either out of commission
or close to it.
The last step is called an apnea test. To
perform this, doctors allow the carbon dioxide level to slowly increase
in the patient's blood; once the concentration reaches a certain
threshold, anyone with a partly functional brain stem will wheeze for
breath. This is the true litmus test for brain death, and it can take
about 20 minutes, during which doctors must not leave the room even for a
moment, said Dr Panayiotis N Varelas, director of the neuroscience
intensive care unit at Henry Ford Hospital in Detroit.
"If the patient tries to breathe, you abort the test immediately and say the patient is not brain-dead," Varelas said.
The exact timing of these tests, and the number of times they are done —
some doctors perform them all once; others do so twice, separated by a
number of hours — vary from hospital to hospital, surveys have found.
But botched cases are very rare, experts said; people diagnosed with
brain death do not come back.
Under New York and New Jersey
laws, people can prolong the provision of oxygen to keep a person's
heart beating for religious or moral reasons. But elsewhere, "life
support" is superfluous, if there is no life to support. In that
context, the McMath and Munoz cases are different, said Fins, who is
working on a book titled "Rights Come to Mind:
Brain Injury, Ethics and the Struggle for Consciousness."
The parents of Jahi McMath "are hoping their daughter will recover and
asking to reverse a decision that isn't under human control," he said.
"In the Munoz case, the family is asking to reverse a decision that is
under human control, and has to do with whether the mother would want to
be a mother under these circumstances."
