A decade later - Fundação Luso-Americana

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socieTy
interview with Anita catlin
“palliative care can be a midwife
to the dying process”
“This is Anita Catlin. We invited her here to speak but we do not believe anything
she says.” This is how American researcher Anita Catlin was introduced in 1996
to an audience of doctors from a large perinatal unit in a major US hospital.
On that occasion, Catlin, a doctor of
maternal-infant nursing and specialist in
perinatal ethics, had been invited to talk
about end of life in newborn infants, a
subject that was more or less taboo among
health professionals in the field. “People
did not want to talk about it. They did not
believe there was any other way to treat
a newborn, even a newborn who was
dying.” Anita Catlin was in Portugal
recently to give a course to doctoral students
of bioethics at the Universidade Católica
Portuguesa [Portuguese Catholic University],
where she talked to us about her work.
In the early 1990s, Catlin became interested
in the rights of mothers and children
when she observed that when
pregnant mothers were treated, the focus
was more on the fetus than on the pregnant
mother. She tells the story of a
Native American woman who developed
gestational diabetes and was seen at the
health care unit where she worked. The
woman was advised to begin taking insulin,
which she refused to do. Unable to
convince her to take insulin, the doctors
threatened to report her to the authorities
for abuse of her future child. “No one
bothered to ask the woman what insulin
meant to her. Was she afraid of the injection?
Did she know someone who died
because of insulin? They were so focused
on the fetus and on the needs of the
fetus, that it seemed to me they did not
think about the mother.”
In addition to mothers’ and children’s
rights, Catlin also began to study the
ethics of neonatal palliative care. She
was one of the pioneers in the field
in her country. In fact, in the US in the
By mónicA cArvALHo*
mid-1990s, debates on neonatal palliative
care were not exactly embraced by
the medical community. “I had some
doctors very angry because I was saying
we must look at the context of the family.
What will happen to this family and
this child if we continue to use high
technology – ventilator, artificial nutrition
– if it does not change the child’s
prognosis? If what we’re doing is not
changing the condition of the child,
then why are we doing it?”
For Catlin, technology
is typically called
into play very extensively
without giving
due thought to the
ethics of its use. She
gives the example of
artificial nutrition
through feeding tubes.
In the beginning, this
t e c h n i q u e w a s
designed for patients
who were recovering
from lesions caused by
ingesting poison or
those who had esophageal cancer.
Currently it is being used in any patient
who does not have an appetite. She goes
on to explain: “In my country, many
times you put in a feeding tube and you
begin to feed the patient artificially – and
you can keep the body alive for a very
long time. But you do not change the
underlying prognosis in any way. People
in bioethics worry about these things.
Just because we know how to do something,
does that mean we should do it?
Is the benefit greater than the burden?”
deATH in HeALTH cAre
Catlin points out that the difficulty in
dealing with death in pediatric and neonatal
units is largely due to the education
and training that health care professionals
receive, particularly in the case of physicians.
She says that in the neonatal nursing
textbooks used in nursing schools there
is usually a chapter on end of life. However,
the same cannot be said for medical textbooks,
even though children often die in
neonatal and pediatric intensive care units.
‘ There is nothing in the book to teach
a physician how to withdraw care,
how to withhold technology, or how
to make a dignified end of life.
not one word.
’
“If you open any book used to train physicians
– and I know all these books, they
are used in Portugal as well – the word
‘dying’ is not in the book. There is nothing
in the book to teach a physician how
to withdraw care, how to withhold technology,
or how to make a dignified end
of life. Not one word.”
She goes on to say, however, that this is
changing, in Portugal as well, where she
believes significant changes are being
made. An example of this is Hospital de São
João in Oporto, which is in the process of
Parallel no. 6 | FALL | WINTER 2011