Medical treatment for older persons and persons with disabilities: 1990 developments.

• Position: Article prepared by the staff of the National Legal Center for the Medically Dependent & Disabled Inc.

Introduction

Courts and legislatures continue to grapple with issues affecting the lives and well-being of persons with disabilities. These decisions have been traditionally made with little input from the very persons they directly affect. In the past year, more effort has been made by persons with disabilities and their advocates to influence the decisions being made about their lives. The National Legal Center for the Medically Dependent & Disabled, Inc., represented individuals with disabilities and disability rights groups as parties and amici in many of the cases summarized in this article. They attempted to caution the courts to be aware of society's misperceptions and irrational fears about persons with disabilities and the way these prejudices, coupled with patronizing attitudes, often result in decisions that devalue the lives of persons with disabilities.

United States Supreme Court

During the 1989-90 term, the United States Supreme Court reviewed two cases of great import to persons with disabilities needing medical treatment and care. A guardian's authority to refuse nutrition and hydration for a permanently unconscious adult was at issue in Cruzan v. Director, Missouri Department of Health, and child eligibility standards for SSI were at issue in Sullivan v. Zebley.

The United States Supreme Court, in its first case dealing with the "right to die" issue, affirmed the decision of the Missouri Supreme Court in Cruzan v. Director, Missouri Department of Health. (1) The Missouri court had denied Nancy Cruzan's guardians (her parents) the authority to withhold from her food and fluids provided through a tube inserted into her stomach. (2) Ms. Cruzan sustained severe injuries in an automobile accident and was in a "persistent vegetative state." (3)

The United States Supreme Court rejected the claim that guardians have an independent constitutional right to exercise the rights of an incompetent person. (4) Next, the Court refused to recognize a "fundamental right" of competent patients to forgo medical treatment and care under the "right to privacy." For purposes of discussion, the Court assumed, without deciding, that competent persons may have a due process "liberty interest" in refusing treatment and care. (5) However, the Court warned that states are not required "to remain neutral in the face of an informed and voluntary decision by a physically able adult to starve to death" because "there can be no gainsaying" the state's "interest in protection and preservation of human life." (6) States may assert a strong interest in life, even an unqualified interest in life as Missouri did, because decisions to refuse-sustaining treatment, particularly nutrition and hydration, "will result in death." (7) Because of the seriousness of such an outcome, the Court found that the federal Constitution does not prohibit Missouri from establishing procedural safeguards for surrogate decisions to refuse treatment on behalf of incompetent persons. Thus, states may impose a heightened evidentiary standard such as the requirement of clear and convincing evidence in proceedings in which guardians seek to withdraw nutrition and hydration from incompetent persons because of the substantial interests at stake. (8) Moreover, the clear and convincing evidence standard serves as a societal judgment about how the risk of error should be distributed. The increased burden should be placed on those seeking termination of treatment because an erroneous decision to terminate treatment cannot be corrected. (9) The Court held that Missouri did not commit constitutional error in concluding that the evidence adduced at trial did not amount to clear and convincing evidence of Nancy Cruzan's desire to have her nutrition and hydration withdrawn. (10)

Lastly, the Court held that the federal Constitution does not require a state to accept or recognize "substituted judgment" of close family members absent substantial proof that their views reflect those of the patient. (11)

In Sullivan v. Zebley, the United States Supreme Court affirmed a third circuit decision finding child eligibility standards for SSI impermissibly inconsistent with the statutory requirement that SSI benefits be provided to children if their disabilities are of "comparable severity" to those disabilities qualifying adults for SSI benefits. (12) Adults who do not qualify under a listing of disabilities have an additional opportunity to qualify for benefits if they can show they are unable to engage in gainful employment. The regulations were considered inconsistent because no similar opportunity exists for children. (13) This scheme results in the denial of benefits to children whose impairments are of "comparable severity" to those that qualify adults for benefits. (14) Finally, the Court found that a functional analysis of how the child's disability impacts on the child's daily activities is no more amorphous or unmanageable than an inquiry into the impact the adult's disability has on his or her ability to engage in gainful employment. (15)

Federal Legislation

The enactment of the Americans with Disabilities Act (ADA) (16) has been hailed as the major civil rights law for persons with disabilities. This statute should offer protection for persons with disabilities in all areas of American life, including health care. As evidence of the need for this legislation, Congress made findings including among other things that "discrimination against individuals with disabilities persists in such critical areas as ... health services." (17)

"Discrimination ... [against persons with disabilities is] based on false presumptions, generalizations, misperceptions, patronizing attitudes, ignorance, irrational fears, and pernicious mythologies." (18) Moreover, discrimination against persons with disabilities often results in the devaluation of their very lives and well-being. For example, in a study of families with members who have disabilities, medical sociologist Rosalyn Benjamin Darling concluded:

Several parents reported lengthy searches for a physician willing and eager to treat their children, and many complined about doctors who responded to their retarded children as nonpersons. One mother noted that whenever her severely handicapped son (now ten years of age) was ill she had to fight to get treatment for him against the advice of physicians who believed he should be allowed to die. (19)

Furthermore, other reports reveal physicians are disinclined to work with patients with disabilities and older people. (20)

Testimony in support of the ADA offered to the Committee on Labor and Human Resources included descriptions of discriminatory practices in many areas including health care. The Committee referred to a report by the United States Commission on Civil Rights that concluded: "Despite some improvements ... [discrimination] persists in such critical areas as education, employment, institutionalization, medical treatment, involuntary sterilization, architectural barriers, and transportation." (21) A spokesperson for the National Easter Seal Society testified that "it makes no sense to bar discrimination against people with disabilities in theaters, restaurants, or places of entertainment but not in regard to such important things as doctors' offices." (22)

The enactment of the ADA offers a new avenue to eradicate discrimination based on disability. Persons eligible for protection under the ADA are "qualified individual[s] with a disability." This term has been defined as "an individual with a disability who, with or without reasonable accommodations..., or the provision of auxiliary aids or services, meets the essential eligibility requirements for the receipt of services or the participation in programs or activities provided by a public entity." (23)

The ADA prohibits discrimination by public entities and public accommodations. The term public entity means "any department, agency..., or other instrumentality of a state" (24) and would presumably include public hospitals. All public accommodations are also covered. These include the "professional office of a health care provider, hospital or other service establishment." (25) Persons with disabilities and their advocates are hopeful that the ADA will prove to be an effective tool in fighting discrimination in all areas.

Federal Cases

An appeal has been filed in the Tenth Circuit Court of Appeals in Johnson v. Gross, a case in which the appellants, infants born with spina bifida and their parents, seek a reversal of the dismissal of their claim alleging violations of section 504 of the Rehabilitation Act of 1973. (26) The suit is based on a published report detailing the treatment decisions made for such children at the hospital over a five year period. (27) The report indicated that twenty-four infants died after doctors and hospital personnel recommended that no treatment be provided based on an evaluation employing nonmedical factors. (28) In the district court, the plaintiff-appellants alleged that, when making their treatment decisions, the physicians used a quality of life formula QL=NEx(H+S), in which QL is quality of life, NE represents the patient's natural endowment (both physical and intellectual), H is the contribution from home and family, and S is the contribution from society. (29) The nonmedical criteria employed in evaluating the children included family wealth and resources, projected intellectual capacity, projected ability to walk, proximity of the family residence to the hospital, and political and fiscal matters, such as reduced government spending for medical care and the school district's purported inability to provide services for handicapped children. (30) The suit alleged that the hospital doctors recommended that some infants received beneficial medical treatment while others, with identical physical conditions, not receive treatment, on the basis of nonmedical, social, economic...