Medical Treatment Of Disabled Infants

Medical Treatment Of Disabled Infants

Future Reflections Jan/ Feb/March 1985, Vol. 4 No. 1
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MEDICAL TREATMENT
OF DISABLED INFANTS
(Reprinted from the December, 1983 issue of PCEH Perspectives, a publication of the President's
Committee on Employment of the
Handicapped.)
Some agreement on treatment of disabled
infants:
The controversy over the civil rights of severely
disabled infants has not been resolved and painful
news stories continue to reveal the torment of
disagreement. However, there was a minor celebration
last month when a number of concerned
groups gathered to sign an agreement. The Principles
of Treatment of Disabled Infants is attached
for your review. It has been signed by the
American Academy of Pediatrics, the National
Association of Children's Hospitals and Related
Institutions, the Spina Bifida Association of
America, the American Association on Mental
Deficiency, the Association for the Severely Handicapped,
the American Coalition of Citizens
with Disabilities, the Down's Syndrome Congress,
and the Association for Retarded Citizens. These
groups were convened by the Department of
Education for a public ceremony signaling their
commitment to resolve the controversies surrounding
medical treatment for severely disabled
infants. The group pledged support to appropriate
medical care, the need for more information by
medical professionals, parents, and the public,
and government and community support for
disabled children. "When medical care is clearly
beneficial, it should always be provided" and "in
cases where it is uncertain whether medical
treatment will be beneficial, a person's disability
must not be the basis for a decision to withhold
treatment" were two major points of the statement.
It further noted: "When doubt exists at any
time about whether to treat, a presumption always
should be in favor of treatment."
Principles of Treatments of Disabled Infants
Discrimination of any type against any individual
with a disability/disabilities, regardless of
the nature or severity of the disability, is morally
and legally indefensible.
Throughout their lives, all disabled individuals
have the same rights as other citizens, including
access to such major societal activities as health
care, education and employment.
These rights for all disabled persons must be
recognized at birth.
Need for Information
There is a need for professional education and
dissemination of updated information which will
improve decision-making about disabled individuals,
especially newborns. To this end, it is
imperative to educate all persons involved in the
decision-making process. Parents should be given
information on available resources to assist in
the care of their disabled infant. Society should be
informed about the value and worth of disabled
persons. Professional organizations, advocacy
groups, the government and individual care
givers should educate and inform the general
public on the care, need, value and worth of
disabled infants.
Medical Care
When medical care is clearly beneficial, it should
always be provided. When appropriate medical
care is not available, arrangements should be
made to transfer the infant to an appropriate
medical facility. Consideration such as anticipated or actual limited potential of an individual
and present or future lack of available community
resources are irrelevant and must not determine
the decisions concerning medical care. The individual's
medical condition should be the sole focus
of the decision. These are very strict standards.
It is ethically and legally justified to withhold
medical or surgical procedures which are clearly
futile and will only prolong the act of dying.
However, supportive care should be provided,
including sustenance as medically indicated and
relief of pain and suffering. The needs of the
dying person should be respected. The family also
should be supported in its grieving.
In cases where it is uncertain whether medical
treatment will be beneficial, a person's disability
must not be the basis for a decision to withhold
treatment. At all times during the process when
decisions are being made about the benefit or
futility of medical treatment, the person should
be cared for in the medically most appropriate
ways. When doubt exists at any time about
whether to treat, a presumption always should be
in favor of treatment.
Government and Community Support
Once a decision to treat an infant has been made,
government and private agencies must be prepared
to allocate adequate resources for appropriate
services as needed to child and family for
as long as needed. Services should be individualized,
community-based and coordinated.
The Federal Government has an historic and
legitimate role in protecting the rights of its
citizens. Among these rights is the enforcement
of all applicable federal statutes established to
prevent and remedy discrimination against individuals
with disabilities, including those afforded
by Section 504 of the Rehabilitation Act.
States also have legitimate roles in protecting the
rights of their citizens and an obligation to
enforce all applicable state laws.
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