Rewriting the Final Chapter (continued)
Sometimes, of course, there's no chance to consult
because parents are dealing with the death of a young child or infant.
Losing a child is tragic under any circumstance, but when the family is
criminalized, it compounds the tragedy, as one Lansing, Michigan, couple
experienced. Before they could begin to properly grieve over the death
of their newborn son, they had to clear themselves of murder charges.
The year was 1994. Traci Messinger, who had undergone
two Cesarean sections with her previous pregnancies, experienced additional
complications in her third pregnancy. She and her husband, Greg, were
warned that if their baby was born at that point -- 12 weeks prematurely
-- he would have little chance of surviving; if he did, he would be in
for a life of operations and blood transfusions. They told the neonatologist
that they didn't want their baby to be resuscitated under those circumstances.
Unbeknownst to the couple, the neonatologist signed herself out of the
hospital that night, leaving a physician's assistant in charge of their
case. She left instructions to "resuscitate anyway" if the baby
Traci Messinger went into severe respiratory distress,
and soon after, Michael Ryan was delivered. And though he was not vigorous,
the physician's assistant attempted to resuscitate him against their wishes
and had him hooked up to a respirator. When Greg visited the baby, he
was horrified. "He was blue-gray, he was in a prone position, he
was lifeless," he recalls, his voice quivering with anger and grief.
"I said, 'Please take him off the respirator.'" The physician's
assistant replied that she didn't have the authority to do so, and that
he would have to wait for the neonatologist to return. The couple was
taken over to see the infant later, because he was going to die. As Greg
handed Michael to his wife to hold and comfort, the movement set off the
alarms for the respirator and other machines hooked up to their son's
tiny body. He stepped out in the hallway and asked a nurse to disconnect
the alarm so they could quietly say good-bye.
There was little opportunity to mourn. Soon after Traci
was released from the hospital, the CEO called to explain that detectives
were investigating their baby's "murder." The case went to trial
and a jury took three hours to acquit the couple.
Though the Messingers' case is an extreme example,
judging from the experiences of some families, physicians need to learn
to communicate better with dying patients and their loved ones, not only
about prognoses but about their options, and their hopes and fears. They
would do well to emulate the bedside manner of Dr. Steven Miles, a geriatrician
and bioethicist at the University of Minnesota. Despite doctors' cries
of time constraints in the age of managed care, Miles says, "I've
never noticed that I'm able to save time by avoiding a conversation with
a patient or family member. And the research shows that the effects of
a single conversation are extremely therapeutic and long-lived."
Of course the way doctors communicate is just
as important as the fact that they take the time to do it. When interacting
with dying patients, notes Miles, "There are two kinds of discussions:
'Joan, your cancer has progressed. Would you want to refuse a ventilator?'
It's a stupid discussion," he says, because it makes the patient
feel as if she will be abandoned unless she elects as much treatment as
possible. A better approach, he says, would be to say, "'Your lung
cancer seems to be progressing. What's the most important thing to you
right now, because I'm going to continue to be your doctor. How do you
want me to take care of you?'"
Dr. Bernard Kaplan, a pediatric nephrologist
at The Children's Hospital of Philadelphia and a faculty member at the
Center for Bioethics, chaired the ethics committee at CHOP when conjoined
twins Angela and Amy Lakeburg came to town. Born in Illinois in 1993,
they were brought to CHOP to be surgically separated at their parents'
request. Because the single, six-chambered heart that the twins shared
wasn't strong enough to support them both, one had to die to give her
sister a chance to live. The surviving twin, Angela, eventually died within
the year, and the ethical implications of the surgery absorbed pundits
and policy-makers in vigorous debate.
But Kaplan doesn't want to dwell on the news-making
twins now, except to complain about the intrusion of outsiders. "The
conjoined twins were freaks of nature in the eyes of everybody,"
he says, his South African-accented voice rising in indignation. "And
everybody who read, and everybody who talked, and everybody who wrote,
and everybody who watched television about these little babies were voyeurs."
Kaplan doesn't want to discuss the cost of
their surgery, because then, "we're going to have to start talking
about the cost of transplants and dialysis and congenital heart disease
and leukemia and metabolic disorders Š Who will draw the line?" Nor
does he want to talk about the futility of their separation, because "the
only way surgeons can learn [these procedures] is by doing it." What
Kaplan prefers to speak of, instead, are his principles for patient care,
which include allowing parents to become intimately involved with medical
decision-making for their children and supporting them regardless of their
choices. "I believe the disease belongs to the child and his family,
not to doctors and society."
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