Medical treatment for older people and people with disabilities: 1989 developments.

Pending before the United States Supreme Court are cases involving eligibility of children with disabilities for Supplemental Security Income (SSI) benefits and a guardian's authority to withhold nutrition and hydration from a permanently disabled but not terminally ill ward. The United States Commission on Civil Rights has issued a comprehensive report demonstrating evidence of current discrimination against infants with disabilities and examining current legal protections. In the federal courts, litigation continues in a case brought by parents on behalf of their infants with disabilities who were allegedly denied medical treatment on the basis of disability. State courts continue to examine the rights of competent and incompetent patients to forgo life-sustaining treatment, including nutrition and hydration. Discrimination against persons with AIDS or HIV continues to affect their access to health care. In 1989 forty states and the District of Columbia have "living will" legislation, and nine states have durable power of attorney for health care laws; however, the provisions of each vary from state to state.

Introduction

This past year saw new developments affecting the rights of persons with disabilities to receive beneficial medical treatment and care. Infants with disabilities and persons with AIDS or HIV continue to face discriminatory denial of treatment based on their disabilities. State courts are acquiescing in competent patients' decisions to terminate life-sustaining treatment while ignoring the impact the lack of personal and financial support has on those decisions. Other state courts are split on whether guardians should be allowed to terminate medical treatment and care to incompetent patients who have not previously, while competent, expressed their wishes.

United States Supreme Court Cases

During its 1989-1990 term, the United States Supreme Court will hear two cases of import to persons with disabilities needing medical treatment and care. Child eligibility standards for SSI are at issue in Sullivan v. Zebley;(1) and a guardian's authority to refuse nutrition and hydration for a permanently unconscious adult is at issue in Cruzan v. Harmon.(2)

In Zebley the United States Department of Health and Human Services has petitioned the Supreme Court to overturn a decision of the United States Court of Appeals of the Third Circuit striking down child SSI regulations(3) of the Social Security Administration (SSA). The regulations were challenged by Community Legal Services of Philadelphia on behalf of a class of children with disabilities denied, or subject to denial of, SSI benefits.(4) The third circuit held that the child eligibility standards were more stringent than adult standards,(5) and therefore were impermissibly inconsistent with a congressional statute(6) directing the SSA to provide SSI benefits to children if their disabilities are "of comparable severity" to those disabilities qualifying adults for SSI benefits.(7) A decision in this case will affect the ability of children with disabilities to receive adequate health care financing, since SSI recipients are automatically eligible for Medicaid in most states.(8)

In Cruzan the parents of Nancy Cruzan, a thirty-two year old woman with severe brain injury residing in a state long-term care facility, have requested in their capacity as court-appointed guardians judicial permission to withdraw from Ms. Cruzan nutrition and hydration provided by tube.(9) Ms. Cruzan is not brain dead or terminally ill.(10) The Missouri Supreme Court refused to grant the parents' request, holding that Ms. Cruzan's treatment wishes were not clearly evidenced by statements she may have made to her incapacity,(11) and that an "unqualified" state interest in preserving life required a state-appointed guardian to maintain effective and nonburden some life-sustaining treatment when a patient's treatment wishes are unknown.(12)

The parents have challenged the Missouri Supreme Court ruling as a violation of substantive due process. They have urged the U.S. Supreme Court to recognize a federally protected constitutional right to forgo life-sustaining care as part of the right to privacy.(13) They seek reversal of the Missouri ruling on the grounds it interferes with Ms. Cruzan's and her parents' rights to make treatment decisions free of state oversight.(14) The Attorney General of Missouri, representing the state facility caring for Ms. Cruzan, has defended the Missouri ruling as a reasonable balance between competing interests,(15) and has argued that a practice of withholding food and fluids simply because the patient will not recover cognitive function is not deeply rooted in this country's tradition and history, and therefore does not enjoy constitutional protection as a fundamental liberty.(16) The Association for Retarded Citizens, the Association for Persons with Severe Handicaps, the Ethics and Advocacy Task Force of the Nursing Home Action Group, and the Medical Issues Task Force of the United Handicapped Federation have filed an amicus brief supporting the Missouri Attorney General's position, arguing that the welfare and interests of all persons with long-term mental disabilities would be threatened by the creation of a broad right of guardians to refuse care for incapacitated wards.(17)

United States Commission on Civil Rights Report

In 1989 the United States Civil Rights Commission issued a comprehensive report, "Medical Discrimination Against Children with Disabilities." The report examines the nature and extent of the practice of withholding medical treatment or sustenance from infants born with disabilities and makes recommendations for protecting them against such practices.(18)

"The commission is convinced that the evidence supports a finding that discriminatory denial of medical treatment, food, and fluids, is and has been a significant civil rights problem for infants with disabilities.(19) The commission based this conclusion on reported cases, recent surveys of physician attitudes, investigative reports, testimony from persons with disabilities and their relatives, and recent medical literature.(20) For example, a survey of pediatricians revealed that as the perceived possibility of mental retardation in an infant increased, the tendency of pediatricians to suggest corrective surgery for other problems decreased.(21)

The commission views as a civil rights problem the question of whether children with disabilities should be denied lifesaving treatment.(22) According to the report, it is well-settled law that the state may intervene to protect a nondisabled child when treatment decisions made by parents will undoubtedly lead to the child's death. The commission report finds that to fail to offer the same protection to disabled children is discrimination based solely on handicap.(23)

The report suggest a renewed use of section 504 of the Rehabilitation Act of 1973 to protect infants with disabilities from medical neglect.(24) Section 504 provides in part: "No otherwise qualified handicapped individual . . . shall, solely by reason of his handicap, be excluded from the participation, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance...."(25)

The United States Supreme Court in Bowen v. American Hospital Association(26) struck down the regulations promulgated to apply section 504 to medical treatment decisionmaking. Bowen provided that a child would not be "otherwise qualified" under section 504 in instances in which parents had refused consent to treatment for the child.(27)

The report notes, however, that the plurality opinion in Bowen left open the possible use of section 504 in instances in which the parents are not the "true" decisionmakers. The report stated that because parents at the birth of a child with disabilities are often saddened and confused and generally have little knowledge of medicine or of what life with a disabled child like, they turn to their physicians for information and recommendations. Consequently, the manner and content of the physicians' recommendations will strongly influence the parents' decision.(28) Thus, the report concluded that section 504 may still be used to protect infants with disabilities in situations where parents did not give a true informed consent.

The report examined in depth the effectiveness of the Child Abuse Amendments of 1984, and concluded that the incidence of discriminatory denial of lifesaving medical treatment to infants with disabilities has not significantly decreased since their enactment.(29) The Child Abuse Amendments require the Child Protective Services (CPS) agencies of each state receiving federal funds for such programs to implement procedures for responding to and investigating instances of medical neglect of children with disabilities.(30) The standard of care requires that disabled children must be given medically indicated treatment, and under all circumstances they must be given appropriate nutrition, hydration, and medication.(31) The three exceptions under which treatment is not considered "medically indicated" are:

(i) The infant is chronically and irreversibly comatose;

(ii) The provision of such treatment would merely prolong

dying, not be effective in ameliorating or correcting all of the infant's

life-threatening conditions, or otherwise be futile in terms

of the survival of the infant; or

(iii) The provision of such treatment would be virtually futile

in terms of the survival of the infant and the treatment itself

under such circumstances would be inhumane.(32)

The report determined that a major flaw in the Child Abuse Amendments leading to their general ineffectiveness is that Child Protective Services agencies have failed to fulfill the statutory responsibilities given to them.(33) In sum CPS agencies have failed to educate their own staffs or to set in place procedures to...