Download Brusky - Faculty

Wisconsin Law Review
1995
Comment
MAKING DECISIONS FOR DEAF CHILDREN REGARDING COCHLEAR IMPLANTS: THE
LEGAL RAMIFICATIONS OF RECOGNIZING DEAFNESS AS A CULTURE RATHER THAN A
DISABILITY
Amy Elizabeth Brusky
I. INTRODUCTION
A hearing person cannot possibly understand what it is like to be deaf, any more than a white person can
understand what it is like to be black, or a man understand what it is like to be a woman. Lacking that
understanding, they cannot possibly make logical decisions in our best interest. You have to be deaf to
understand.
In June 1990, the U.S. Food and Drug Administration approved the use of cochlear implants for deaf
children aged two through seventeen. Ever since, a bitter and emotional debate has emerged between
hearing parents desiring to make use of the new technology by implanting their deaf children, and deaf
advocates claiming that deafness is not a disability to be cured, but rather a unique, linguistic subculture.
For hearing parents, the inner-ear implants offer their children a window into the world of sound and a
choice to participate in either or both the hearing and deaf communities. However, leading advocates for
the deaf charge that parents who seek implants for their deaf child are robbing the child of his or her
"birthright" of silence by steering the child into the hearing culture instead of accepting the child's deafness
and the culture and lifestyle that accompany it.
This contentious debate has raised several legal questions, including who should decide on behalf of a
minor child whether the child should receive a cochlear implant? and are the people who are presently
making the decisions, the hearing parents and medical professionals, truly capable of deciding the issue in
the "best interests" of a deaf child? The answers to these questions turn upon the definition of deafness. If
deafness is defined as a disability or an "illness" to be "cured" by medical and technological "treatment,"
then the cochlear implant is viewed as a welcome device and hearing parents should be allowed to take all
medically accepted steps in curing their child's deafness. On the other hand, if deafness is defined as simply
a linguistic subculture within a dominant majority, then the cochlear implant is seen not merely as
unnecessary, but rather as "a threat--at best paternalistic, but at worst sinister and bordering on genocide."
If deafness is defined as a culture, perhaps, then, hearing parents and the medical professionals, who are
inherently not a part of the deaf culture, are not in the best position to determine whether a cochlear implant
would serve a deaf child's "best interests."
Although Part IV suggests that a hearing parent's interests may conflict with a deaf child's best interests,
Part V argues that the parents, rather than any other potential decisionmaker, should appropriately assume
the principal decisionmaking responsibility regarding whether to implant their child. In taking such a
position, Part V supports parental autonomy, a child's individual choice and the important bonds of the
parent-child relationship. While all parents, both deaf and hearing, should have the right to choose whether
their child should receive or forego a cochlear implant, this right should be limited when the child is
sufficiently mature and capable of giving his or her own informed consent.
Finally, this Comment contends that in order to ensure that the decisionmaking is reflective, deliberate, and
exercised truly with the best interests of the child in mind, the doctrine of informed consent should be
utilized. The state should impose upon physicians the duty to ensure that all patients or their surrogates
fully comprehend the surgical cochlear implant procedure, its risks, its benefits, and the widely accepted
and fulfilling cultural alternative. Although this Comment supports intervention in the decisionmaking
process so as to ensure that each decision is truly informed, it does not support any state intervention to
mandate cochlear implantation in deaf children, even should a "perfect" cochlear implant eventually be
designed.
II. THE COCHLEAR IMPLANT DEBATE: DEAFNESS AS A DISABILITY VERSUS DEAFNESS AS
A
CULTURE
A. The Cochlear Implant
The cochlear implant, invented more than two decades ago by Australian researchers, is an electronic
device which is designed to stimulate surviving nerves in the inner ears of patients with profound hearing
loss, thereby providing them some measure of hearing. Cochlear implants can assist people who are born
deaf or have such profound hearing loss that they receive little or no benefit from hearing aids. Unlike
hearing aids, which merely amplify and deliver sound to the external ear, cochlear implants receive,
process and, bypassing the injured part of the ear, deliver sound information directly to the brain.
Although still deemed experimental, more than 7,000 people, including 2,000 children, have received the
implants since they were first approved by the U.S. Food and Drug Administration in 1985. The cochlear
implants have since met with varied success. Although it is difficult to predict how much speech
understanding any one individual will receive from the implants, experts agree that, as a group, individuals
who are post-lingually deafened will do better than those who were deafened before they developed
language.
Nonetheless, studies have also shown that even children who are born deaf can benefit from the implant,
especially if they receive the device at age two or three. Several studies have suggested that if learning a
spoken language is the goal, then adequate and early exposure to spoken language is essential. Thus, in
order to increase a deaf child's potential for spoken language acquisition and development, some medical
professionals encourage a child to be implanted at a very young age. Regardless of the age at which a child
receives a cochlear implant, almost all experts agree that the ultimate value of the implant depends greatly
on the amount of training and support from parents and teachers.
B. The Deaf Community
Some deaf activists' objections to cochlear implants, however, go beyond the specific fear that the implants
are unproved and risky. To some in the deaf community, the cochlear implant represents "the ultimate
invasion of the ear, the ultimate denial of deafness, the ultimate refusal to let deaf children be Deaf . . . ." ]
Rather than viewing deafness as a disability or a tragic infirmity, some members of the deaf community
view deafness as a culture. Several deaf advocates believe that implanting deaf children undermines the
cultural integrity of the deaf community and furthers the perspective that deafness is a disease to be "fixed"
rather than a cultural difference. Rather than cochlear implantation and the auditory/oral communication
route, deaf advocates encourage deaf children to use American Sign Language and identify with other deaf
people.
. . Moreover, when social scientists ask people who are blind or in wheelchairs if they wish they could see
or walk, they say yes immediately. Only people who are deaf answer the equivalent question no. The
essence of deafness, deaf advocates explain, is not the lack of hearing but the community and culture based
on American Sign Language.
In an attempt to recognize the deaf community's right to survive as a minority culture and the right of a deaf
child to be deaf, several deaf advocates have called for legislation which would eliminate the right of a
parent to implant deaf children under the age of eighteen.
III. TRADITIONAL LEGAL FRAMEWORK FOR MEDICAL DECISIONMAKING ON BEHALF OF
MINORS
Decisions about the medical care of minors traditionally involve the separate rights and interests of the
child, the child's parents and the state. The role of the parents in such decisions is generally recognized as
paramount. Parents are given primary responsibility in making medical decisions for their children because
they ordinarily act in accordance with their child's best interests, and are usually in a better position than
any other third party decisionmaker to evaluate those interests. Courts have thus accorded great deference
to parental decisions on behalf of their minor children. However, when parents fail to provide adequate
medical care to their children due to neglect, poor judgment or religious beliefs, the state has intervened as
parens patriae to protect the child's interest in his or her own general health and welfare.
A. The Child's Interest
By virtue of their immaturity, inexperience and lack of judgment, children are not as capable as adults
either to understand the risks and consequences of their actions or to exercise reasonable judgment in
making important decisions. Consequently, children are traditionally considered legally incompetent. States
have greatly limited a child's ability to exercise personal autonomy in medical decisionmaking, including
the ability to consent to or to refuse medical treatment. As a result, a child's parents are usually entrusted to
make the important decisions necessary to a child's health and welfare. If, however, a child is older and
capable of understanding the nature and risks of the proposed treatment, then the justification for affording
a child a lesser right than an adult or for enforcing parental rights that are based on a child's incompetence
no longer exists. In these circumstances, states recognize that a child is competent to make certain
decisions.
Recognizing that a mature minor should be allowed to make certain legal decisions independently, most
states have adopted some form of the mature minor doctrine either statutorily or judicially. For public
policy reasons, many of the mature minor statutes permit minors to consent on a confidential basis to
pregnancy-related care and treatment for sexually transmitted diseases, substance abuse and mental
illness. Other than these limited circumstances, states do not recognize a child's ability to make an informed
decision regarding the child's own health or welfare. The states leave these decisions to the child's parents.
Thus, although it is a child's health, welfare and "best interest" that are at stake, it is most often the parent's
perception of the child's best interest which governs.
B. The Parent's Interest
The United States Constitution also protects a parent's privacy right in child-rearing. The United States
Supreme Court recognizes that parents possess a fundamental liberty interest in the care, custody, and
management of their children. A parent's constitutional right to privacy and child-rearing includes the right
to make medical treatment decisions for minor children.
However, while parents have a fundamental right to direct the upbringing of their children, that right is not
absolute. Courts have been willing to interfere with parental rights when the parent's decision threatens the
child's life, health or emotional well-being, or when the child's constitutional rights may be involved. In
such circumstances, when the parents fail to provide for their child's well-being, the state, as parens patriae,
acts to provide for the child's proper health, welfare, and safety. In Prince v. Massachusetts, the United
States Supreme Court found that parental autonomy, under the guise of religious freedom, was not
unlimited. Eloquently describing the state's parens patriae power, the Court stated: "Parents may be free to
become martyrs themselves. But it does not follow that they are free, in identical circumstances, to make
martyrs of their children before they have reached the age of full and legal discretion when they can make
that choice for themselves."
In addition to cases of abuse or neglect, courts have also interfered with parental rights and accorded less
deference to parental decisions when a conflict of interest exists between the parents and the child. A
conflict of interest may arise when a parental decision is inappropriately influenced by either financial or
emotional considerations. Additionally, a conflict of interest may arise when parents are forced to consider
trading off the interests of one child with those of another, as in a sibling organ transplant decision.
C. The State's Interest
Although the state may interfere in family matters to safeguard a child's health, well-being and autonomy,
the state can do so only for the most compelling reasons. In many circumstances, the state simply is not an
adequate substitute for the judgment of a loving, nurturing parent. Thus, the state has a high burden of
justification before it can abridge parental autonomy by substituting its judgment for that of the parents.
While the state, parents and minors all possess vested interests inmedical treatment decisions for minors,
the scope and contours of these interests continually develop and change as new and controversial medical
situations arise. One such situation which has recently emerged and has begun to challenge the traditional
legal framework for medical decisionmaking on behalf of minors is the use of cochlear implants in young
deaf children.
IV. CONFLICTING INTERESTS IN THE COCHLEAR IMPLANT ISSUE MAY GIVE RISE TO A
FOURTH INTEREST--THE DEAF COMMUNITY
A. The Deaf Community as a Deaf Child Advocate?
In addition to the three conventional interests involved in medical decisionmaking on behalf of minors,
there is a fourth interest relevant in the case of cochlear implants--the deaf community. Currently vying for
legal rights, some members of the deaf community contend that the interests of both hearing parents and
the state inherently conflict with the best interests of a deaf child. Deaf activists argue that hearing people,
solely by virtue of not being deaf, are not competent to make decisions in the best interests of deaf children.
Deaf activists maintain that, consequently, hearing parents' decisions to implant deaf children are often "illinformed, ill-prepared, ill-advised, ill-founded, and ill-fated." As a result of such decisions, activists warn
that implanted children frequently will find themselves caught between both the hearing and deaf
communities, never truly belonging to either. In order to recognize deaf children's right to their own
personal autonomy and their right to be deaf, some deaf leaders have drafted legislation to prohibit cochlear
implantation in all deaf children. Others have simply urged using the deaf community as a deaf child
advocate.
While often well-trained and certainly well-meaning, hearing people make their decisions from the
perspective of a hearing person. Upon discovering that their child is deaf, hearing parents immediately turn
to the medical profession and uncritically accept the infirmity model of deafness. As a result, these hearing
parents and their children are rarely provided with information regarding the deaf community and deaf
culture. In order to respect the autonomy of an incompetent deaf child, deaf activists maintain that the best
interests of a deaf child should be determined not by consulting medical professionals, but rather by
consulting members of the deaf community.
B. Shortcomings of Legally Recognizing or Mandating the Deaf Community
as a Deaf Child Advocate
Although a deaf adult's perspective would certainly be crucial to a hearing parent's informed decision on
whether to implant a child, legally recognizing or mandating the deaf community as a deaf child advocate
in such decisions would create many problems. First, whether or not there even exists a need for a deaf
child advocate is entirely dependent upon whether one accepts the definition of deafness as a culture. Since
the deaf community itself is divided over this definition and cannot maintain a united stand regarding the
cochlear implant issue, it would be difficult to determine which definition and which side of the debate the
deaf child advocate should adopt.
The second shortcoming of legally recognizing the deaf community as a deaf child advocate is that any
intervention by the deaf community in a cochlear implant decision most likely would not be objective or
disinterested. Similar to hearing parents who make their decisions from the limited perspective of being
hearing, a deaf child advocate would make his or her decision from the limited perspective of being deaf.
Finally and most importantly, recognizing the deaf community as an integral decisionmaker in a cochlear
implant decision would undermine parental autonomy, family integrity and the parent-child relationship.
Circumventing hearing parents and systematically dismissing them from the decisionmaking process as
simply insignificant factors in their own child's growth and development would be both inappropriate and
undesirable.
Thus, in light of the above shortcomings, it is highly unlikely that either a court or a legislature would
legally recognize or mandate the deaf community as a deaf child advocate in such a personal decision as
whether a child should receive a cochlear implant. Instead, the law is more apt to continue to allow all
parents, both hearing and deaf, the right to raise their children as they think best, including the right to
decide on behalf of their child whether or not the child should receive a cochlear implant.
V. ALL PARENTS, BOTH HEARING AND DEAF, SHOULD HAVE THE RIGHT TO MAKE AN
INFORMED CHOICE FOR THEIR CHILD
A. Let the Parents Decide
The deaf community's assertion that cochlear implants completely undermine a positive deaf identity
cannot be reconciled with the majority of hearing parents' preparation to do virtually anything that will
enable their child to lead a "normal" life and to communicate with them. Resolving this conflict requires a
sensitive balancing of the competing interests and a recognition that there is no "right" answer. The
difficulties inherent in this process are compounded by the urgency of the decision since several studies
have encouraged children to be implanted at a young age. In resolving this dispute, one must focus
primarily on the child's interest. After all, the child is the person who is most affected by the outcome of the
decision.
The decision whether to implant a child is a truly personal and controversial one, requiring many
considerations. Medical, social, financial and age issues must all be addressed. Our societal assumptions
that parents generally have their child's best interests at heart, and that they are better situated to evaluate
those interests than is any judge, guardian ad litem, or any other third party should apply in the cochlear
implant context as in others.
When a parental decision is largely determined by subjective values and beliefs or when it is unclear
whether the decision is "beneficial," the state often feels less comfortable stepping in and substituting either
its judgment or that of a third party's. State and/or third party intervention, which thereby limits parental
discretion in family decisionmaking, undercuts the richness of diversity by presupposing that there are
identifiable community norms which ought to govern child- rearing practices Moreover, since courts have
recognized that parental autonomy to care for children free from state interference satisfies a child's need
for family integrity, continuity and physical well- being, state intervention in such a personal, family
decison as whether a child should receive a cochlear implant would likely have a disastrous long-term
impact on family stability.
In addition to parental autonomy, deference to parental decisions to implant children acknowledges a
child's interest in his or her own personal autonomy and individual choice. Courts have recognized that all
children possess certain rights, including the right to privacy and the protection of individual choice. The
cochlear implant issue should not revolve around whether a particular parental decision is right or wrong,
for no one can truly ascertain how effective the implant will be or what choice the child would have made.
Rather, the issue is one of choice and options. Without a cochlear implant, a deaf child has no choice. The
child is resigned to deafness. With an implant, however, the hearing world becomes another option in
addition to the deaf community.[Italics added]
Many of the children being implanted today are incapable of giving their own informed consent. However,
of those that are of a mature age to consent, the decision should be left to the child. The United States
Supreme Court has recognized a child's right to personal autonomy and individual choice.
Because the decision whether to receive or to forego a cochlear implant is inherently personal and
controversial as the costs and benefits one associates with hearing are largely determined by subjective
values and beliefs, the decision is analogous to the United States Supreme Court decisions concerning
abortion and contraception, in which "mature" minors are afforded complete autonomy.
Finally, a mandatory requirement that parents receive information about the deaf community and culture
before they decide to implant their children would mitigate substantial conflict of interest concerns by
forcing parents at least to consider the widely accepted and fulfilling cultural alternative for their child. In
addition, such a requirement would help ensure that parents reach an informed consent and a well-reasoned
decision.
C. The State Should Never Mandate Cochlear Implantation
Although the state could justify intervention as far as ensuring informed consent on behalf of patients and
parents, the state should by no means ever mandate cochlear implantation in deaf children, even if a perfect
"bionic" ear is eventually designed. Indeed the state, as parens patriae, has a duty to protect the general
health and welfare of its minors. Thus, if deafness is defined as solely a disability and not a unique culture,
the state may be tempted to intervene and "save" children whose parents refuse to "cure" their children's
deafness with cochlear implants.
Although the state may interfere in family matters to safeguard a child's health or welfare, the state can do
so only for the most compelling reasons. Clearly, courts have indicated that state intervention to prevent
parental refusal of life-saving treatment is justified by the state's interests in preserving life and is in a
child's "best interests." In drawing the remaining boundaries of state intervention, courts have recognized
that the state is not an adequate substitute for the judgment of a loving and nurturing parent. Moreover, the
law simply does not have the capacity to supervise the delicately complex interpersonal bonds between a
parent and child. Since the success of the cochlear implants is largely dependent upon post-surgery therapy
and psychological support and encouragement, a court, though it may be tempted to order surgery over a
parent's objection, cannot force a family to provide therapy at home or the moral support that may be
essential to the success of the child's implant.
Moreover and most importantly, the decision to implant a child is not a life-or-death choice, but rather a
preference for one lifestyle over another. Mere disapproval of a particular family's lifestyle or values or
disagreement with a particular decision is insufficient to justify state intervention and override parental
autonomy. Therefore, the law must continue to restrain courts and medical professionals from coercively
imposing their "kindness"-- their preferred lifestyles--in the form of medical care upon nonconsenting
parents and their children. The state must never exercise its power to reinforce prejudice and discrimination
against those who are physically, culturally or otherwise different.
VI. CONCLUSION
Deciding what exactly is in the "best interests" of a child is a highly subjective task. Even though hearing
parents and certain members of the deaf community disagree about whether or not a child should receive a
cochlear implant, both undoubtedly have, as their primary motive, the best interests of the child at heart.
The existing legal framework for medical decisionmaking on behalf of minors allows some tolerance for
diversity of individual views about what is in the best interests of a child. At the same time, however, the
framework captures certain acts which clearly are inconsistent with the well-established social norms about
what is in a child's best interests. Using the existing legal framework to determine who should decide on
behalf of a deaf child whether or not the child should receive a cochlear implant leads to the conclusion that
parents, rather than any other potential decisionmaker, should appropriately assume the principal
decisionmaking responsibility.