The Down Syndrome child in need of
treatment is a medical ethics paradigm. In a film distributed by the
Kennedy Foundation, for example, a Down Syndrome newborn is allowed to
starve to death because his parents will not consent to surgery to
correct a duodenal Artesia. And it is to detect and abort fetuses affected
with Down Syndrome (trisomy 21) that amniocentesis is most often used.
Down Syndrome children are also better than dogs to practice surgery on,
as William Nolen reminds us in his The Making of a Surgeon. He
recounts a conversation between a pediatrician and a young surgeon about
a sepal defect repair-a major heart operation-the latter is going to
perform the next day. The young surgeon says he's "not worried a bit," and
wouldn't wear even if his patient died on the table.
"Oh, now I get it," replies the
pediatrician, "you're doing a mongoloid."
The Down Syndrome child in court, on the
other hand, has been a rarity-most legal commentators have assumed that
courts would routinely order almost any treatment withheld solely because
the child's legal guardian believed that a Down Syndrome child's quality
of life is low. However, there is now legal authority in California for
the proposition that a Down Syndrome child need not receive heart surgery
for a ventricular sepal defect, even if such surgery would be routinely
ordered in the case of a normal child (In re Phillip B., 156 Cal. Rptr.
48, Ist App. Dist.. Division 4, 1979). Since this conclusion is
unprecedented and potentially dangerous to the well-being of all
retarded citizens, it is important to understand both the facts and the
opinion.
In July 1978. when the case first came to
court, Phillip Becker was eleven years old. The petition alleged that his
parents were not providing him with the "necessities of life,"
specifically a heart operation. He had never lived at home with his
parents and had been institutionalized since birth. At the time of the
petition, he was residing at Schnuhr's Nursery (a home for nineteen multi
handicapped children) and was attending the Rouleau Children's
Center School in San Jose, California. He is able to write
his name, has good motor and manual skills, can dress himself, is
toilet-trained, can converse reasonably and take part in school and Boy
Scout activities. He was described as "near the top level" for a Down
Syndrome child, and there was testimony that his IQ was "around the 60
range." A school psychologist testified that he could be placed in the
county's sheltered workshop following his schooling.
The Medical
Testimony
In 1973 Gary Earl Gathman. a pediatric
cardiologist, made a clinical diagnosis of ventricular sepal defect (a
hole between the two pumping chambers of the heart which elevates the
pulmonary artery pressure) and recommended cardiac catheterization to
define the anatomy of the problem. The parents refused. In late 1977
Phillip was again referred to Dr. Gathman because he required extensive
dental surgery, and the anesthesiologist refused to administer general
anesthesia until his cardiac problem was clarified. This time the parents
consented and Dr. Gathman performed the cardiac catheterization. The
results confirmed his clinical impressions and indicated that Phillip had
already experienced changes in his pulmonary arteries. Dr. Gathman
testified that an average life expectancy for someone with Phillip's
condition, left uncorrected, is thirty years; that about one-quarter of such persons would die suddenly: and that most
others would slowly deteriorate. Before they are totally debilitated, they
will suffer from fainting spells during which they turn blue-black because
of the lack of oxygenated blood. This makes them a constant worry to
their caretakers. These children also tend to be smaller, thinner, and
slower than normal; they "cannot run and play and keep up with the other
children."
Dr. Gathman recommended
corrective surgery to the parents, putting the risk of death at 3 to 5
percent, which he considered a "low risk." The risk was related to
changes in the pulmonary artery, which would continue to deteriorate. He
also noted a less than 1 percent chance that a heart-block necessitating a
pacemaker would result from the surgery. Dr. Gathman indicated that he
did not always recommend surgery for Down Syndrome children: "For a child
who has an IQ of less than 30 and is institutionalized on a permanent
basis, there's very little that can be gained from surgery."
The only other
physician to testify was James William French, also a pediatric
cardiologist, who had been asked by Dr Gathman if Phillip's condition was
surgically correctable. He testified that he believed that it was; the
pulmonary vascular disease had not progressed so far that surgery was not
feasible. While he was not asked to give an opinion on this case, he
indicated that he "probably would have" recommended surgery if Phillip was
"otherwise normal." While confirming most
of Dr.
Gathman's testimony, he put the risks of death from surgery at 5 to 10
percent-----noting that in his personal opinion Down Syndrome children
were "more risky" to operate on than normal children because they are
"less cooperative" and "seen more subject to infection." The witness
admitted that he had recommended against surgery "in cases where children
were so severely damaged intellectually or the central nervous system
damaged that they virtually did not function or they were virtually
incapacitated."
One of Phillip's
teachers, a school
psychologist,
a program coordinator, and a probation officer gave additional testimony.
This established, among other things, that Phillip's parents visit him
about twice a year (although they testified they saw him five to six times
a year) and that he is a lovable child who "refers to lots of men as Dad."
There was no further medical testimony, although the parents placed into
evidence a letter from Dr. Harry E. Hartsel, who predicted that Phillip
would not learn to read, write, or take care of himself; he leads "a life
I consider devoid of those qualities which give it human dignity."
The Parents
The only other witnesses were Phillip's
parents, who testified that although Phillip had never lived with them,
they considered themselves responsible for him as part of their family.
They monitor his care and once transferred him to another institution
when they thought he wasn't getting proper care. They thought about the
proposed heart surgery for a long time, and consulted with a number of
physicians and a Jesuit priest (they are both Catholics). Their primary
reason for refusing consent was that they do not want Phillip to outlive
them. They believe that geriatric care in this country is terrible and
that Phillip will not be well cared for after they die. "His quality of
life would be poor in such a place "and “life in and of itself is not what
it's all about." They also did not want him to be a burden on their other
children. When asked who would be better off if Phillip were dead, Mr.
Becker replied: "I think it would be best for everyone, including
Phillip and the survivors." And later he said, "There is no useful point
in extending his life beyond the natural, by means of this operation."
Mrs. Becker testified similarly, saying: "Geriatric care in this country
at its best is not good. And I really don't want Phillip to have to be
extended into geriatric care. As it is, Phillip will be with us our whole
life. We are looking into them living thirty or forty years. Well be
seventy or eighty."
The Judge's
Opinion
The testimony took a day-and-a-half with
Judge Eugene M. Premo of the juvenile court presiding. The court ruled
immediately after the closing arguments. In a statement that can be
charitably characterized as rambling, the judge decided not to order the
surgery. He found the proposed surgery "elective" and not "a life-saving
emergency.” He determined that there were inherent risks of the surgery
which no one could control, "such as a slip of the knife. malpractice,
negligence" all of which would "make this entire case moot." He described
the parents as articulate, intelligent, caring, loving, and thoughtful.
He spoke of two of his judicial colleagues who had Down Syndrome
children-one cares for the child and "the other one can't literally face
the fact that the child exists." He said he didn't think he personally
could handle it "if it happened to me."
The judge condemned the physician who
testified that he would not recommend surgery if the child's IQ were 30
or less, denoting the IQ test as a "vehicle of terrible abuse" that could
be wrong and is always arbitrary. Given what he regarded as a subjective
medical opinion, the judge was kindly disposed to the Beckers. He
concluded that their decision was "in the range of debatable actions." He
did not want the government interfering with parental choice; he was
worried "by the fact that 1984 is coming upon us." The legal conclusion:
"There is no clear and convincing evidence to sustain this petition (to
operate)."
The Appeal
At the urging of the Pro Life Council of
California, which had been instrumental in bringing suit, the California
Attorney General's office agreed to appeal. The opinion of the appeals
court, written by Judge P. J. Caldecott and concurred in by Judges J.
Rattigan and J. Christian, is, if anything, less well-reasoned than Judge
Premo's. The appeals court considered three questions: (1) was there any
substantial evidence to support the judge's decision; (2) should the
judge have required clear and convincing proof (or should the evidentiary
standard have been preponderance of the evidence), and (3) should Phillip
have been advised of his right to have counsel appointed for him at the
proceeding? All three questions were quickly disposed of, the latter two
on technical points.
On the first point, the appeals court noted
that one physician testified that the operation on Phillip was more risky
than average because of pulmonary vascular changes and because he was a
Down Syndrome child. In addition there was risk of nerve damage that
could necessitate a pacemaker. This evidence alone showed that the court
"had before it a child suffering not only from a ventricular sepal
defect but also from Down Syndrome, with its higher than average
morbidity, and the presence of pulmonary vascular changes." This was all
the appeals court needed to conclude that the lower decision was based on
substantial evidence.
The Precedent
The case stands for the proposition that
Down Syndrome children do not have to be given treatment, if it can be
demonstrated that the risks of the treatment are slightly higher than
they would be in a normal child. How did this remarkable eugenic policy
come to be articulated by an American court? Let me suggest some possible
reasons.
First, nowhere in the lower court
proceedings, is there any articulated standard for decision. Courts have
recently been choosing among three: the best interests of the child,
substituted judgment (usually considered the same standard when a child is
involved), and reviewing the parental decision to see if it is "fair and
reasonable." The lower court did not cite any of these; instead it
decided that the parents can make the treatment decision as long as it is
"in the range of debatable actions." This standard is reasonable if it
means that the proposed medical care is debatable in the medical community
and that there is no medical consensus on treatment for this child.'
However, as applied by the trial judge, the
standard seems to be, as long as the parents sincerely believe in what
they are doing (and are willing to debate it?), courts should not "second
guess" them.
The appeals court did no better. It bowed
to the "best interests" standard, but nowhere applies it. Of course, it
cannot. It makes no sense to argue that non-treatment is in Phillip's best
interest-unless one is willing to argue that the quality of life of even
high-level Down Syndrome children is so low that they are better off
dead-even if death will come slowly with pain and discomfort.
Alternatively, the parents argued that institutional life is so poor that
it would be cruel to subject Phillip to it in later life. This argument
would let us justify not treating any senior citizen in an institution
or nursing home because the care they receive is so poor. Likewise, the
argument that the parents do not want their son to outlive them cannot
prevail. It is, in fact, statistically more likely that one or both
parents will die before he does than that he would suffer harm because of
the surgery. And even if this were not so, we do not (yet) permit parents
upon their deaths to have their children executed.
Second, the decision was made in a
judicial vacuum, with no consideration of similar cases from other
jurisdictions. Two cases that could have been discussed were
Quinlan
and Saikewicz. The first decision permitted a parental decision to
withhold or withdraw treatment, but only if the patient had "no
reasonable possibility of returning to a cognitive, sapient state." The
second decision found that Joseph Saikewicz, a sixty-seven-year-old
institutionalized individual with an IQ of 10, was "cognitive and
sapient" and that any decision not to give him chemotherapy for cancer
(arguably an "elective" treatment for a non-emergency condition) could
only be made by determining what decision he himself would make if he
could make the decision. On the basis of either of those decisions,
treatment for Phillip Becker would have been ordered in
New Jersey and
Massachusetts. Ironically, the appeals court, in citing a Stanford Law
Review article by Professor John Robertson (who argues in support of
such a child's right to treatment), uses only his definition of Down
Syndrome. 3
Third, the medical
evidence could have been better presented. Only one physician was prepared
to testify that the operation be done on Phillip-, the other was not ready
to commit himself. Both were pediatric cardiologists-and the judge seemed
to need a surgeon to assure him that the operation could be done and was
in the range of the routine. Even though neither court ever used the
adjectives "ordinary" or "extraordinary," both opinions clearly assume
the recommended surgery is extraordinary; that risks of 5 to 10 percent
mortality and 1 percent of needing a pacemaker are major risks on which
one can reasonably decide against treatment. Incredibly, neither court
balanced the surgical risks against the certainty of prolonged
debilitation and death.
Conclusion
Parents have a right to
their moral convictions. But the law places some limits on their actions.
When a parental decision is challenged, courts have an obligation to
transcend emotional considerations. Courts must make principled decisions
based on clearly articulated standards. The Becker decision is an
arbitrary decision based on a vague standard. It devalues human life in
the name of family autonomy; it particularly attacks the mentally
retarded.
Phillip Becker was
denied his right to live because he is a member of an oppressed minority
group: the mentally retarded. We cannot take rights seriously for
ourselves, if we do not respect them in our weakest citizens.' Taking
rights seriously is not a painless or cost-free measure; it is the only
way our values can survive. Given all this, it is extremely disturbing
that the California Supreme Court decided not to review the case. On
narrow, legalistic grounds involving standards of review, the case may
appear uninteresting. However, it was not decided on these grounds and has
a symbolic value far beyond its petty prose. It stands as a beacon
cautioning us that courts too make mistakes: but the mistake is made in
the open. It must be openly acknowledged, reversed if possible, and
challenged by other courts confronted with similar decisions.