This article covers developments occurring from the beginning of October 1991 to the end of September 1992. During this period, the federal government considered the issues of health care rationing, the medical rights of residents in long-term care facilities, and advance directives. The federal courts decided cases involving section 504 and its application to medical treatment decisions, the due process rights of persons needing medical care, and the liberty to accept or refuse medical treatment. The states continued to consider legislation on advance directives and surrogate decisionmaking. Numerous state courts heard cases involving such issues as the removal of life-sustaining treatment from never-competent persons, the definitions of living human being and personhood with respect to individuals with substantial disabilities, and the legalization of lethal injections and assisted suicide.
Federal Legislative/Administrative Developments
Oregon Medicaid Waiver
Oregon's controversial plan to prioritize Medicaid-funded services was rejected by the United States Department of Health and Human Services (HHS) on the grounds the plan would violate the Americans with Disabilities Act (ADA).(1) In a letter to Oregon's governor, the HHS Secretary advised the state to submit a new plan that "strictly adheres" to the ADA.(2) An HHS legal analysis found "considerable evidence that (the ranking methodology) was based in substantial part on the premise that the value of the life of a person with a disability is less than the value of the life of a person without a disability."(3) HHS objected to Oregon's use of a public opinion poll that asked respondents to rank various impairments according to their perceived quality of life. The survey "quantifie[d] stereotypic assumptions" about disabilities and "allowed bias against persons with disabilities" to affect the final ranking of services.(4) HHS concluded that "any methodology that would intentionally ration health care resources by associating quality of life considerations with disabilities does not comport with the mandate of the ADA."(5)
The ADA issue was first raised when Congressman Chris Smith of New Jersey requested the NLCMDD to evaluate the Oregon plan under the recently enacted civil rights statute.(6) The NLCMDD examined the plan and found it "would serve to perpetuate, rather than eliminate, societal prejudices about the value of living with disabilities."(7) The NLCMDD faulted the plan for using the public opinion polling data. The data were necessarily arbitrary because
[t]he pollesters asked the respondents to consider where on a scale of 0 to 100 a particular limitation or symptom would lie .... A thousand arbitrary responses do not constitute a rational basis for rating the value or disvalue of life in a nursing home, wheelchair, or coma.
Thus, the statistical data used to create the Plan's quality of life quotients were non-objective and arbitrary, and were susceptible to the societal prejudices and stereotypes that Congress sought to eradicate by passing the ADA.(8)
Oregon officials met with HHS representatives in August 1992 to explore ways of altering the methodology to resolve the ADA issue. The plan's proponents expect to submit a new plan.(9)
Proposed Rule on Long-Term Care Facilities
On August 28, 1992, the Health Care Financing Administration (HCFA) of the United States Department of Health and Human Services published a proposed rule on procedures to enforce Medicaid-Medicare requirements for long-term care facilities.(10) The proposed rule would change the way the federal government measures the quality of care provided by long-term care facilities and would institute stringent penalties for noncompliance with federal standards.
The proposed rule would institute a surveillance system whereby long-term care facilities would be subject to periodic inspections to assess: (1) the presence or absence of immediate and serious threats to resident health and safety, (2) the severity of such threats, and (3) the duration or number of such threats.(11) According to HCFA, this "scope and severity scale"
enhances the survey team's ability to classify identified deficiencies on an objective basis. The scope and severity scale provides a matrix to assist the survey team in assessing risks to residents. The scale also serves to guide the survey team to ensure that remedy recommendations are uniform as well as appropriate to the seriousness of deficiencies.(12)
This survey approach would be based on a New York demonstration project in some, but not all, respects. The New York Quality Assurance System (NYQAS) measured the seriousness of facility deficiencies by looking at the impact of a particular deficit on patient care, and not the relative value of the particular requirement that was violated by a facility. The NYQAS approach employed a "resident outcome scale" to determine the potential or actual harm to residents posed by a facility's practices.(13)
However, HCFA rejected another aspect of the NYQAS approach that "purported to measure the seriousness of psychological harm to a resident by measuring the extent to which a resident reacted to a facility's violation of a [federal] requirement."(14) This "reaction scale" incorporated the "reasonable man" standard, since "many residents in nursing homes are bereft of reason and cannot react to a given situation."(15) HCFA found that using such a standard would result in inconsistent surveyor findings because there could be a wide disparity in conclusions as to how a reasonable person would react to any given violation.(16) This standard could "insert confusion and subjectivity into the enforcement process" and thereby thwart federal efforts to apply sanctions consistently.(17)
The proposed rules would apply not only to physical dangers but also to "resident rights violations" and to practices compromising a resident's "ability to achieve the highest practicable physical, mental, or psychosocial well-being...."(18) However, a resident would retain the right to refuse optimal treatment.(19)
The proposed rule also would require state intervention in cases of alleged abuse and neglect.(20) Abuse would be defined as "physical, psychological, or verbal interaction with a [long-term care facility] resident, including but not limited to ill-treatment, physical violation, and/or otherwise disregard of an individual which would cause or result in mild to severe, temporary, or permanent mental or physical injury, harm or, ultimately, death."(21) Neglect would mean "a failure, through inattentiveness, carelessness, or omission of an individual to provide timely, consistent, and safe services, treatment and care to a facility resident."(22)
According to the proposed rule, each state would have to review all abuse and neglect complaints, regardless of the source, and investigate the circumstances whenever oral or written evidence substantiates a complaint.(23) If a resident is in immediate jeopardy of serious harm, impairment, or death, then either HCFA or the state may impose a range of remedies in addition to those already available under state and federal laws.(24) Such remedies as appointing a temporary manager to remove serious threats to residents, terminating a facility's eligibility for reimbursement, and/or denying payments for new patients could be imposed before the facility has a right to appeal.(25) A facility's failure to comply with state or federal directives to remedy a deficiency could also result in stiff financial penalties for each day the facility is not in compliance.(26)
Proposed Rule to Implement PSDA
HCFA also published a proposed rule to implement the Patient Self-Determination Act (PSDA)(27) with respect to the Medicare and Medicaid programs.(28) The proposed rule generally tracks the PSDA by obligating medical providers to advise patients of their rights under state law to execute advance medical directives, to inform patients of the providers' policies on advance directives, to note in each patient's records whether the patient has an advance directive, and to institute community awareness programs. In addition, the proposal would require the states to develop standard written descriptions of state law on advance directives for distribution to medical providers and patients. A final rule had not yet been issued at the time this article was written.(29)
Federal Judicial Developments
Johnson v. Thompson
The United States Court of Appeals for the Tenth Circuit rejected claims by the parents of infants born with spina bifida and the Spina Bifida Association of America (SBAA) that Oklahoma Children's Memorial Hospital (OCMH) had violated section 504 of the Rehabilitation Act of 1973.(30) The suit was prompted by a published report(31) revealing that twenty-four infants with spina bifida had died after doctors and hospital personnel, employing nonmedical factors, recommended that no treatment be provided to those infants.
The parents argued that the physicians violated section 504 by discriminating against the infants because of the parents' low socioeconomic status. The physicians considered the parents' status to be a barrier to the infants' receiving appropriate resources for the care necessitated by their disabilities. The Tenth Circuit found that the plaintiffs failed to show that the discrimination had resulted "solely by reason of handicap."(32) The circuit court ruled that since "the appellants allege that the discrimination resulted at least in part from their low socioeconomic status ... [t]hat discrimination is not actionable under section 504."(33)
The parents also asserted that the physicians violated section 504 by recommending nontreatment because of the severity or degree of the infants' disabilities. The Tenth Circuit found that the infants were not "otherwise qualified" for medical treatment because the treatment was related to their disability.(34) The circuit court...