Photo of a nasogastric (NG) tube by Daniel Fascia, photo illustration by Jeanne Kortekamp
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THE DEATH OF A YOUNG WOMAN named Terri Schiavo on
March 31, 2005, marked the sad end of a three-month-long
legal and political firestorm over how she should
be treated. A victim of severe brain injury following a
cardiac arrest, she had lain bed-bound in a nursing
home for 15 years, unable to communicate or to eat.
Her husband and her parents had fought for years over whether
her condition had been properly diagnosed, whether she had a reasonable
hope of recovery and whether she would have wanted to be
kept alive this way, using a feeding tube. For three months, her story
was in the news every day. People began to ask themselves: What
would I do if it were my spouse? My child? What would I want if I
were the one in the bed?
Comments regarding this case from a variety of Catholic leaders
raised serious questions for many people about Catholic teaching
regarding end-of-life care. Media coverage of these
comments, defending her right not to be “starved to death” and criticizing the
motives and intentions of her husband,
only amplified a sense of confusion
about whether a major change in
Church teaching had taken place.
This confusion affected even people
who work in health care.
A few months ago, for example,
I received a letter from the superior
of a community of the Missionary
Sisters of Charity. This
order, founded by Mother Teresa, ministers
to the dying by running hospices for
the homeless, the destitute, those dying of AIDS,
poverty or drug addiction, plus all those dying alone and otherwise
unwanted. Mother Superior asked me whether her community would
need to change its practices in light of “new” Church teaching.
She pointed out that most dying patients stop eating and drinking
at some point. She explained that, because the sisters are not
trained as nurses or physicians, they are not able to use feeding
tubes or intravenous treatments. But since many of the sisters came
from India, they knew that one could place a needle under the skin (rather than the more skilled process of
placing it in a vein) and inject fluids
that could be absorbed through the tissue
under the skin. Such treatment can
be lifesaving for victims of diseases
such as cholera, even if it causes uncomfortable
swelling.
Mother Superior wanted to know if
her sisters were now required, under
pain of mortal sin, to do this for all of
their dying patients who stopped eating.
I shudder to think that these sisters
might have come to believe that their
saintly foundress, Mother Teresa, had
sinned by not having provided these
interventions for her dying poor ones
in Calcutta!
In fact, this sister had misinterpreted
recent Church statements. The Church
does not teach that all dying patients
require feeding tubes or intravenous
fluids. Sadly, this sort of misinterpretation
seems to be widespread. It is
critically important for all Catholics—
patients, their families, health-care professionals
and clergy—to understand
that Catholic teaching about life-sustaining
treatments has not changed
in any fundamental way. Long before
anyone used the term “bioethics,”
Catholicism was teaching that people
can decline the use of medical treatments
under certain conditions.
Extraordinary Means of Treatment
The Church has always taught that suicide
and euthanasia are morally wrong.
The Church, however, has never required
that a person do everything medically
possible to prolong life. This tradition
is very old. In the fourth century
A.D., St. Basil the Great wrote in his
Long Rules (Q. 55), “Whatever requires
an undue amount of thought or trouble
or involves a large expenditure of effort
and causes our whole life to revolve, as
it were, around solicitude for the flesh
must be avoided by Christians....Therefore,
whether we follow the precepts of
the medical art or decline to have
recourse to them...we should hold to our
objective of pleasing God and see to it
that the soul’s benefit is assured, fulfilling
thus the Apostle’s precept:
‘Whether you eat or drink or whatsoever
else you do, do all to the glory of God’”
(1 Corinthians 10:31).
In the 16th century, the Church formalized
its teaching that there is a distinction
between “ordinary” and
“extraordinary” means of care. These
words are technical theological terms.
People are, therefore, easily confused
because these terms do not mean the
same thing that they do in everyday
language.
In theological language, “ordinary”
really means obligatory and “extraordinary”
really means optional. This is
similar to the way we talk about “extraordinary”
ministers of the Eucharist.
Most eucharistic ministers are good
(but not necessarily “extraordinary”)
people. Calling them “extraordinary”
means that the pastor has the option to
use them to help distribute Holy
Communion.
Similarly, in medical ethics, “extraordinary” care indicates
optional care—interventions that
go beyond what the faithful can
be required to do in order to be
good stewards of their bodies.
Traditionally, this has been judged to be
the case if the intervention is too expensive,
not likely to work, is associated
with great suffering or might save the
patient’s life at too great a psychological,
spiritual or interpersonal cost.
Under conditions like these, declining
an intervention (whether surgery,
medicine, or even food and water) was
not considered suicide. Thus, Dominican
friar Francisco de Vitoria (died
1560) wrote, “I would say that if the
depression of spirit is so low and there
is present such consternation in the
appetitive power that only with the
greatest of effort and as though by
means of a certain torture can the sick
man take food, right away that is reckoned
a certain impossibility, and therefore
he is excused...” (De Temperantia,
#1).
In 1957, Pope Pius XII applied this
tradition to the use of ventilators: “But
normally, one is held to use only ordinary
means—according to circumstances
of persons, places, times, and
culture—that is to say, means that do
not involve any grave burden for oneself
or another. A more strict obligation
would be too burdensome for most
men and would render the attainment
of the higher, more important good
too difficult. Life, health, all temporal
activities are in fact subordinated to
spiritual ends. On the other hand, one
is not forbidden to take more than the
strictly necessary steps to preserve life
and health, as long as he does not fail
in some more serious duty...” (The Pope
Speaks, 4:4, 1958).
At the end of the 20th century, the
Catechism of the Catholic Church upheld
this tradition: “Discontinuing medical
procedures that are burdensome, dangerous,
extraordinary, or disproportionate
to the expected outcome can be
legitimate; it is the refusal of ‘overzealous’
treatment. Here one does not
will to cause death; one’s inability to
impede it is merely accepted. The decisions
should be made by the patient if
he is competent and able or, if not, by
those legally entitled to act for the
patient, whose reasonable will and legitimate
interests must always be
respected” (#2278).
Regarding artificial hydration and
nutrition, the Ethical and Religious Directives
for Catholic Health Care Services in
the United States have not been
changed; there has been no instruction
from the Vatican to change them.
These Directives (United States Conference
of Catholic Bishops, fourth edition,
2001) state: “There should be a
presumption in favor of providing
nutrition and hydration to all patients,
including patients who require medically
assisted nutrition and hydration,
as long as this is of sufficient benefit to
outweigh the burdens involved to the
patient” (#58).
SPONSORED LINKS
Pope John Paul II's Statement
On March 20, 2004, Pope John Paul II
addressed participants at a four-day
conference sponsored by the Pontifical
Academy for Life and the International
Federation of Catholic Medical Associations.
He addressed the issue of artificial
hydration and nutrition in patients
suffering from the neurological condition
known as the “persistent vegetative
state.” He said, “I feel an obligation to
reaffirm vigorously that the intrinsic
value and the personal dignity of every
human being does not change no matter
what the concrete situation of his
life.” He later said that a human being
“never becomes a ‘vegetable’ or an ‘animal.’”
If patients are not dying, he said, artificial
nutrition and hydration must be
considered “in principle, ordinary and
proportionate and, as such, morally
obligatory, insofar as and until it is seen
to have attained its proper finality,
which in the present case consists in
providing nourishment to the
patient and alleviation of his suffering.”
Unfortunately, media reports
about this statement have inadvertently
contributed to the confusion
about whether using
feeding tubes is morally obligatory.
News stories amplified hysteria
about this very technical speech. His
words should not be interpreted out of
context.
To help provide that context, in July
2004, an international group of
Catholic scholars met to discuss the
use of artificial hydration and nutrition
in a variety of medical conditions,
particularly in light of the papal speech.
These faithful, orthodox scholars, convened
by the Canadian Catholic Bioethics
Institute in Toronto, reached the
following conclusions:
“The papal speech needs to be understood
in the context of the Catholic
tradition. The words ‘in principle’ do
not mean ‘absolute’ in the sense of
‘exceptionless’ but allow consideration
of other duties that might apply. Therefore,
what the papal statement really
means is that, for permanently unresponsive
patients who are not otherwise
dying, tube feeding should be presumed
to be ordinary and proportionate (and
as such, morally obligatory) unless its
use would conflict with other grave
responsibilities or would be overly burdensome,
costly or otherwise complicated.”
(The complete text of this
statement has been published in the National Catholic Bioethics Quarterly 4
[2004], pp. 773-82.)
It is a common misconception of
Catholic tradition that popes can say
whatever they want and it becomes
dogma. In reality, popes are also bound
by our common tradition, in the trust
that this tradition, through the work of
the Holy Spirit, bears the truth that
popes are called to expound. Popes
may apply this tradition and speak to
new issues, clarify aspects of the tradition
that have raised new doubts or
extend the body of dogma beyond what
tradition has previously addressed. But
they cannot jettison that tradition.
Thus, the international colloquium, as
described above, interpreted the papal
speech in the light of that tradition.
To provide further context, it is critical
to note that the papal speech of
March 2004, while raising issues of concern
regarding the care of all patients,
was delivered at the end of a conference
regarding the care of persons in the
persistent vegetative state. (I prefer the
term used by the Australians, “post-coma
unresponsiveness,” and will use
it in the rest of this article).
This condition was the focus of that
speech. It is the condition from which
Terri Schiavo suffered. It is a very rare
neurological condition in which a person
starts in a coma that is often caused
by inadequate cardiopulmonary resuscitation
for someone whose heart has
stopped. In such cases, after six months
of intensive care, patients may come off
the ventilator, be able to open their
eyes and breathe on their own, have
cycles of wakefulness and sleep, plus
perform reflexive actions such as yawning.
But the severe brain damage causes
a total inability to interact with other
people, speak, understand or perform
purposeful movements such as eating
or walking.
Such persons, if treated with a feeding
tube and intensive nursing care,
can sometimes live for months or years.
When they die, it is typically due to
complications of feeding-tube treatment,
such as pneumonia caused by
food placed in the stomach going up
the esophagus (foodpipe) and down
into the lungs.
Thinking about using feeding tubes
in a rare condition such as post-coma
unresponsiveness is very different from
thinking about using feeding tubes in
more common diseases such as cancer,
AIDS, Alzheimer’s disease, Lou Gehrig’s
disease or Parkinson’s disease. Tube
feeding in these types of patients will
often result in great burden, no net
benefit and multiple complications.
In very many such cases, tube feeding
will meet the criteria by which it
could be considered extraordinary or
morally optional. These diseases continue
to progress and get worse—no
matter what treatment is offered. Complications
such as pneumonia are much
more common when feeding tubes are
used for such patients.
Patients with dementia sometimes
pull the tubes out and would need to be restrained in order to be fed. In fact, in
these conditions it has even been difficult
to show that the use of feeding
tubes actually makes the patients live
longer. Clearly, in many such cases,
the burdens of treatment can be judged
disproportionate with respect to the
benefits, and the treatment could therefore
be judged extraordinary or morally
optional.
Advance Directives
The main issue in the case of Terri
Schiavo was actually not the feeding
tube itself but rather who should decide
whether she should have the feeding
tube. She had left no “advance directive”
(such as a living will or a durable
power of attorney for health care) stating
what she would have wanted done
in such circumstances or who should
make medical decisions on her behalf.
Deciding what to do for her would
have been easier if she had left such a
directive.
Broadly speaking, the Catholic
Church supports advance directives,
provided these are executed in a way
that is consistent with Church teachings.
In fact, if a person, motivated by
a charitable desire to relieve others of
the burdens such care might impose,
executes an advance directive that states
that he or she would not want artificial
hydration and nutrition if ever in a
state of post-coma unresponsiveness,
then even the most conservative of
Catholic moralists would conclude that
the treatment should not be given.
The Church’s deepest worry about
patients like Schiavo is that they—or
even patients who are not as debilitated
as she was—will come to be considered
mere burdens. The Church
worries that their dignity will be
impugned if they are thought of as
“vegetables.”
It is indeed a failure of charity if we
decide not to provide medical treatment
for patients merely because we
don’t consider them worthy of our time
and resources. But this does not mean
that we can never act with a spirit of
profound Christian charity and humility,
fully respecting the dignity of dying
persons, if we decide that it is best to let
them return to their Maker. We can
never kill patients, but we can, under
certain conditions, allow them to die.
Debate persists within the Church
about the conditions under which family
members can be allowed to determine
that the provision of tube feeding
to persons who suffer from post-coma
unresponsiveness represents “extraordinary
means.”
This debate reflects ongoing questions
about the symbolic nature of
feeding, whether someone in an unresponsive
state can be said to suffer and
whether it is ever possible to construe
the intentions of a third party discontinuing
life-support for a person in that
state as anything other than an intention
to make the person dead.
These focused debates about a specific
treatment for a rare condition
should not, however, lead anyone to
conclude that there has been any fundamental
change in Catholic teaching
about life-sustaining treatments, even
though the public discussion surrounding
the Schiavo case could understandably
have led many to think that. To
conclude, the Church teaches that:
• We should never euthanize patients
or assist them in suicide;
• Sometimes certain life-sustaining
treatments (including feeding tubes)
are “extraordinary” (morally optional)
and can be withheld or withdrawn;
• Special care must be taken in determining
that feeding tubes are extraordinary,
particularly if the patient suffers
from a rare neurological condition
called post-coma unresponsiveness.
Pope John Paul II's Own Choice About Medical Care
One should need little more proof that
the Catholic tradition of forgoing
extraordinary means still endures than
the fact that Pope John Paul II himself
declined hospitalization in his final
illness. He forswore multiple life-sustaining
treatments (including a
permanent feeding tube) in a manner
taught consistently by the Church, from
St. Basil of Caesarea to Mother Teresa of
Calcutta.
As Christians, we consider human
life a precious gift. But we always
recognize, humbly, that the human
body is finite and we look forward to
the gift of eternal life promised by our
Savior.
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Difficult Decisions
I OFTEN HELP FAMILIES make decisions about whether to continue various
life-sustaining treatments, including feeding tubes, for their
loved ones. These decisions are never easy. We naturally associate
providing food and water with what it means to care.
But there is a big difference between deciding not to use a feeding tube
in a reversible condition, such as a foodpipe damaged by the swallowing
of a caustic substance, and deciding not to place a feeding tube in
someone at the very end stages of a progressive and fatal disease. Still,
families worry.
A colleague of mine asked for my advice a few months ago as her father
was dying of cancer. She felt helpless because he had stopped eating.
But she knew that if she fed him it would go “down the wrong pipe.”
I reminded her that the bodies of such patients begin to shut down and
that the food, even if absorbed, would fail to nourish. I pointed out that
putting food into a tube in the stomach carries little of the intimacy of
sharing a meal. I reminded her that patients cannot even taste tube feeding
and do not feel a full stomach.
I explained that hospice nurses say it is better to die a little dehydrated,
so that the lungs do not fill with fluid. Still, my colleague needed to do
something. I advised her to take a demitasse spoon, dip it in honey and
put it in his mouth three times a day. She later told me that doing this
had been among the most memorable parts of her father’s dying—for
her and for her family.
I like to think this was a little like the death of St. Francis, who
refused “extraordinary” treatment from his doctors and had stopped eating.
However, Lady Jacoba, his friend, had come from Rome with his
favorite almond cookies. He ate little bits of these cookies from her hand
before he died. Perhaps it was a foretaste of what we are all promised
in Christ Jesus.
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