Medical treatment rights of older persons and persons with disabilities: 1991 developments.

Summary

Federal legislation requires that health care facilities receiving Medicaid payments must provide their patients upon admission with information on advance directives. The Department of Justice has issued regulations implementing the Americans with Disabilities Act. Oregon is seeking federal approval of a plan to ration health care for Medical recipients. A federal court of appeals is reviewing whether section 504 of the Rehabilitation Act applies to infants with disabilities in need of medical care. In cases involving refusal of life-sustaining treatment, state courts continue to grapple with who is the appropriate decisionmaker and what limitations apply to protect incompetent persons. The number of states that have enacted "living will" and durable power of attorney laws has increased.

Federal Legislation and Regulations

Patient Self-Determination Act

Congress enacted as part of the Omnibus Budget Reconciliation Act of 1990 the Patient Self-Determination Act (PSDA). (1) The PSDA requires health care provides to inform their patients upon admission to a health care facility about their right to accept or refuse medical or surgical treatment. (2) The PSDA applies to any hospital, skilled nursing facility, home health or personal care agency, hospice, and health maintenance organization that serves recipients of Medicare or Medicaid. (n3)

These providers must document in every patient's medical records whether the patient has signed a living will or other advance directive. (4) The PSDA also obligates the providers to follow applicable state law on advance directives. (5) Providers had to comply with the PSDA by December 1, 1991. (6)

The PSDA applies only to adult patients.(7) It forbids providers from conditioning their provision of services, or otherwise discriminating against patients, based on whether a patient has or has not signed an advance directive. (8) Providers and their agents may refrain from implementing advance directives pursuant to state conscience clauses. (9)

The PSDA also mandate that an educational campaign on advance directives and related issues be waged at the national, state, and local level. The Department of Health and Human Services must develop and distribute materials "to inform the public and the medical and legal profession of each person's right to make decisions concerning medical care, including the right to accept or refuse medical or surgical treatment, and the existence of advance directives." (10) State participating in the Medicaid program must "develop a written description of the law of the State (whether statutory or as recognized by the courts of the State) concerning advance directives." (11) Providers must avail to their patients written information about state law concerning an individual's right to accept or refuse treatment and a copy of the provider's own policy regarding those rights. (12) In addition, providers must educate their staff and the community on issues concerning advance directives. (13)

The PSDA is problematic in two respects. First, it promotes advance directives as a suitable mechanism for medical decisionmaking even though most advance directives are too general to be helpful and are often poor substitutes for physician-patient dialogue. n14 Second, the PSDA goes beyond encouraging patients to consider advance directives as an option, by authorized federal and state agencies to produce descriptions of subjects more broad in scope and more controversial in substance. As noted by the National Health Law Program, the PSDA's educational mandate "could easily be read broadly to require a description of subjects [such as] informed consent, the powers of spouses and Conservation, applicability to nutrition/hydration, etc., which may well be controversial and unsettled." (15)

American with Disabilities Act

The U.S. Department of Justice issued on July 26, 1991, two final rules (hereinafter "Rules") to implement various provisions of the Americans with Disabilities Act of 1990 (hereinafter "ADA"). (16) The Rules apply to state and local government services and privately operated accommodations open to the public (17) and clarify the requirements of the ADA with respect to health care providers.

The Rules reiterate the ADA's requirement that government services and public accommodations shall not be denied on the basis of disability if those services or accommodations are provided generally. The Rules define disability as "a physical or mental impairment" substantially limiting one or more of a person's life activities, a "record of such an impairment," or the perception that such an impairment exists. (18)

The Rules then list several examples of physical or mental impairments that would qualify as disabling conditions, including "any physiological disorder or condition...affecting" such body system as the "neurological," "musculoskeletal," and "respiratory" systems. (19) The definitions specify mental retardation, organic brain syndrome, cerebral palsy, multiple sclerosis, HIV disease, drug addiction, alcoholism, and several other conditions as examples of disability. (20) According to the Department of Justice, disability would also include "traumatic brain injury." (21)

The ADA definition of disability closely tracks the list of conditions considered to be "handicaps" under section 504 of the Rehabilitation Act of 1073, (22) and the listing of conditions is not exhaustive. (23) Thus, except for certain statutorily enumerated conditions to be excluded, (24) the term disability under the ADA and the Rules is to constructed as "a;; encompassing." (25)

This means that coma and permanent unconsciousness or a persistent unconscious state, for example, should be considered disabilities under the ADA. (26) These conditions impair the neurological system and would fall within the classifications of traumatic brain injury or organic brain syndrome. (27) Thus, health providers subject to the ADA cannot withhold medical treatment or other care solely because an individual is comatose, unconscious, or otherwise brain-injured.

The Rules also advise that individuals with disabilities may choose to reject any "accommodation, aid, service, opportunity, or benefit" available under the ADA. (28) However, the Rules also state that "[n]othing in the Act or [these Parts] authorizes the representative or guardian of an individual with a disability to decline food, water, medical treatment, or medical services for that individual." (29)

The Department of Justice explained these provisions in its accompanying analysis.

The [ADA] is not to be construed to mean that an individual with disabilities must accept special accommodations and services for individuals with disabilities when that individual chooses to participate in the regular services already offered. Because medical treatment, including treatments for particular conditions, is not a special accommodation or service for individuals with disabilities under section 501(d) [of the ADA], neither the Act nor this part provides...affirmative authority to suspend such treatment....[The]he Act is not designed to foster discrimination through mandatory acceptance of special services when other alternatives are provided; this concern does not reach to the provision of medical treatment for the disabling condition itself. (30)

Thus, "neither the ADA nor the regulation[s] alters current Federal law ensuring the rights of incompetent individuals with disabilities to receive food, water, and medical treatment." (31)

Oregon Plan of Medicaid Rationing

The state of Oregon has applied for a waiver of federal Medicaid rules in its bid to implement a controversial plan to reform health care policy for persons with low income. (32) The Oregon plan prioritizes health care services and proposes to decrease the number of services presently covered under Medicaid by limiting coverage to only those services the state of Oregon deems essential, while expanding Medicaid eligibility to those persons whose income is below the poverty line but above current Medicaid eligibility ceilings. (33)

The Oregon plan ranks more than seven hundred different conditions and their appropriate treatments according to expected outcomes and the perceived benefit of each outcome. (34) The Oregon Health Services Commission created the list after taking a poll and evaluating the results of town meetings to determine how members of the Oregon public would rank different levels of physical, emotional, and social impairments in order of acceptability and preference. (35) Thus, for example, members of the public considered whether "spells of feeling upset, being depressed, or of crying" were better or worse than "general tiredness, weakness or weight loss," or "loss of consciousness such as seizure, fainting, or coma" was better or worse than "burns over large areas of face, body, arms, or legs." (36) The commission then assigned a "decrement value" to reflect the public's apparent preference or lack thereof for each level of impairment. (37)

The commission combined this polling data with statistics on a person's expected life span to arrive at a "quality of life/duration of life" quotient or numerical value for each condition and treatment. (38) The commission then ranked each condition and treatment. Thus, conditions resulting in a long life span and involving impairments deemed as more acceptable placed higher on the list than those conditions barely improving one's life span and resulting in impairments deemed less desirable. (39) The rating system explicitly relied on quality of life criteria. (40)

The commission submitted this list of conditions/treatments and their quality of life makings to the Oregon legislature and included cost estimates for funding each treatment. (41) The legislature approved the list (42) and authorized Medicaid funding for only those treatments ranked above a line drawn by the legislature. (43) Oregon cannot...

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