Medical Treatment Rights of Older Persons and Persons with Disabilities

Transcription

1

2 Copyright 1992 by the National Clearinghouse for Legal Services. All Rights Reserved. 25 Clearinghouse Review 1203 (January 1992) Medical Treatment Rights of Older Persons and Persons with Disabilities By the National Legal Center for the Medically Dependent and Disabled. This article was written by the staff of the National Legal Center for the Medically Dependent and Disabled, Inc., 50 S. Meridian St., Ste. 605, Indianapolis, IN , (317) Summary. Federal legislation requires health care facilities receiving Medicaid payments to 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 Medicaid 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. I. Federal Legislation and Regulations A. Patient Self-Determination Act As part of the Omnibus Budget Reconciliation Act of 1990, Congress enacted the Patient Self- Determination Act (PSDA). /1/ The PSDA requires health care providers 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, or health maintenance organization that serves recipients of Medicare or Medicaid. /3/ 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 providers to follow applicable state law on advance directives. /5/ Providers must have complied with the PSDA by December 1, /6/ The PSDA applies only to adult patients. /7/ It forbids providers from conditioning the 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/

3 The PSDA also mandates an educational campaign on advance directives and related issues to be waged at the national, state, and local levels. HHS 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/ States 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 give 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. /14/ Second, the PSDA goes beyond encouraging patients to consider advance directives as an option by authorizing 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 Conservators, applicability to nutrition/hydration, etc., which may well be controversial and unsettled." /15/ B. Americans with Disabilities Act On July 26, 1991, the U.S. Department of Justice issued two final rules implementing various provisions of the Americans with Disabilities Act of 1990 (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 qualify as disabling conditions, including "any physiological disorder or condition... affecting" such body systems 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" also includes "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 1973, /22/ and the list of conditions is not exhaustive. /23/ Thus, except for certain statutorily enumerated conditions to be

4 excluded, /24/ the term "disability" under the ADA and the rules is to be construed as "all 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 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 treatment 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.... [T]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] alter[] current Federal law ensuring the rights of incompetent individuals with disabilities to receive food, water, and medical treatment." /31/ C. Oregon Plan for 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 sets priorities for health care services. It proposes to decrease the number of services currently covered under Medicaid by limiting coverage to only those services that 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 700 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

5 depressed, or of crying" were better or worse than "general tiredness, weakness, or weight loss," or whether "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 lifespan 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 with an expected long lifespan and involving impairments deemed as more acceptable placed higher on the list than those conditions with a short expected lifespan and resulting in impairments deemed less desirable. /39/ This rating system explicitly relied on "quality of life" criteria. /40/ The Commission submitted this list of conditions/treatments and their "quality of life" rankings 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 implement this policy until HHS approves it. /44/ Generally, proponents argue that the Oregon plan improves upon the status quo by ensuring that all persons below the poverty level will receive the same basic and most beneficial medical care. /45/ Opponents assert that the plan is unfair because its creators did not involve lowincome persons and persons with disabilities in the planning, and yet subjected only these classes to the plan's restrictive coverage. /46/ II. Federal Cases Johnson v. Gross, a case in which infants born with spina bifida and their parents seek reversal of the dismissal of their claim alleging violations of Section 504 of the Rehabilitation Act of 1973, is pending on appeal in the Tenth Circuit. /47/ The suit was prompted by a published report revealing that 24 infants had died after doctors and hospital personnel, employing nonmedical factors, recommended that no treatment be provided to those infants. /48/ In the district court, plaintiff-appellants alleged that, in making treatment decisions, the physicians used a quality of life formula, QL = NE x (H + S), in which QL represented quality of life, NE the patient's natural endowment (both physical and intellectual), H the contribution from home and family, and S the contribution from society. /49/ The nonmedical criteria employed in deciding whether treatment should be provided for the children included family wealth and resources, the child's projected intellectual capacity and ability to walk, the family's geographical proximity to the hospital, and political and fiscal matters, such as anticipated cuts in government spending for medical care and the school district's purported inability to provide services for handicapped children. /50/ The suit alleged that the doctors had recommended to parents that some infants receive beneficial medical treatment while others--with identical physical conditions--not receive treatment, on the basis of nonmedical, social, economic, familial, and intellectual factors. Moreover, the parents were not informed that these factors

6 had been used in determining the recommendations given to them about their infants' care. Plaintiff-appellants claimed that defendants had violated Section 504 by using the anticipated degree of handicap as a basis for recommending that beneficial medical treatment not be provided and for providing the parents or guardians with pessimistic prognoses. They maintained that defendants subjected the infants to an evaluation based on nonmedical, socioeconomic criteria, and that their discriminatory actions caused the parents or guardians to agree to deny the infants beneficial medical treatment. /51/ In dismissing the Section 504 claim, the district court relied on United States v. University Hospital, /52/ which held that a handicapped infant was not otherwise qualified to receive the hospital's services, because her parents refused consent to treatment. However, the parents in Johnson allege that they were not informed of the defendants' discriminatory selection process and thus were unable to give informed consent. III. State Cases A. Competent Patients In McKay v. Bergstedt, the Nevada Supreme Court affirmed a lower court order authorizing the removal of a respirator from Kenneth Bergstedt, a nonterminal, competent adult with quadriplegia, and the administration of a sedative to relieve his pain during the dying process. /53/ Bergstedt, who had been paralyzed for 20 years following a childhood swimming accident, petitioned the lower court for such relief because he feared the prospect of life without his father's care. His father was terminally ill with cancer. /54/ Kenneth Bergstedt died before the supreme court issued its opinion. /55/ The court found that Mr. Bergstedt's liberty interest in refusing treatment outweighed four relevant state interests (preservation of life, prevention of suicide, protection of innocent third parties, and preserving the integrity of the medical profession). /56/ However, the court also found a fifth state interest "in encouraging the charitable and humane care of afflicted persons." /57/ Pursuant to this interest, had Mr. Bergstedt continued to live, "it would have been necessary to fully inform him of the care alternatives that would have been available to him after his father's death or incapacity." /58/ The court determined that the relief requested was not tantamount to suicide. /59/ Rather, the state's interest in the preservation of life pertained only to "meaningful life," according to the court, because "the State has no overriding interest in interfering with the natural processes of dying among citizens whose lives are irreparably devastated by injury or illness to the point where life may be sustained only by continual or radical intervention." /60/ The court concluded that "the extent to which... artificially extended life has meaning and value in excess of the death value" is for the competent adult patient such as Mr. Bergstedt to determine. /61/ The court provided a "procedural matrix by which the weighing and decisional process may be satisfied pending statutory treatment by the Legislature." /62/ Two nonattending physicians

7 would have to certify that a patient requesting nontreatment is mentally competent, has an irreversible condition, is free of coercion, and, if the patient is nonterminal--i.e., has a life expectancy of six months or more--has been apprised of the alternative care options available. /63/ An amicus curiae brief submitted by the National Legal Center for the Medically Dependent and Disabled (NLCMDD) on behalf of American Disabled for Access and Power Today (ADAPT) of Southern California was quoted liberally in the dissenting opinion of Justice Springer. /64/ In particular, Justice Springer adopted NLCMDD's view that "'value judgments about the worth of Mr. Bergstedt's life have clouded [the] ability to properly assess the suicidal basis for Mr. Bergstedt's request to die.'" /65/ He further agreed that "'life support systems such as ventilators, electric wheelchairs, or other automated devices enhancing one's functions are real extensions of the person, and should be treated as such.'" /66/ Springer argued that Mr. Bergstedt's request to die was "sanctioned and facilitated only because of his disabled condition." /67/ B. Incompetent Patients After the U.S. Supreme Court upheld the Missouri Supreme Court's clear and convincing evidence standard for the withdrawal of nutrition and hydration in Cruzan v. Director, Missouri Department of Health, /68/ Nancy Cruzan's guardians repetitioned the Circuit Court of Jasper County to remove her feeding tube and offered new evidence of her medical treatment wishes. /69/ In Cruzan v. Mouton, the trial court, whose initial order authorizing Ms. Cruzan's guardians to withdraw her food and fluids prompted appeals to the Missouri and U.S. Supreme Court, found that the new evidence provided clear and convincing proof that Nancy Cruzan's intent "would be to terminate her nutrition and hydration." /70/ Ms. Cruzan's guardians were thus "authorized to cause the removal of nutrition and hydration" from their daughter, /71/ which they did immediately following the December 14, 1990, order. Ms. Cruzan died two weeks later on December 29, /72/ The evidence primarily involved testimony of two witnesses who worked with Ms. Cruzan at a school for children with disabilities and described her interactions with a severely physically and mentally disabled child named Melissa. /73/ The witnesses recalled a conversation with Ms. Cruzan in which Melissa was the point of reference. /74/ Ms. Cruzan's expressions indicated that she would not want to live like Melissa, be "impaired to the point of Melissa, [or] be tube fed like that." /75/ The only specific remarks attributed to Ms. Cruzan concerned "force feeding and the medical condition of somebody who is vegetative... in relationship to Melissa." /76/ In an amicus curiae brief filed on behalf of the Medical Issues Task Force of the United Handicapped Federation and the Ethics and Advocacy Task Force of the Nursing Home Action Group, NLCMDD argued that these statements amounted to "'informally expressed reactions to [an]other [person's] medical condition or treatment,'" which the Missouri Supreme Court specifically held in Cruzan v. Harmon were not "'clear proof of a patient's intent.'" /77/ Within weeks of Ms. Cruzan's death, a similar case was filed in Missouri. At 17 years of age, Christine Busalacchi suffered a severe head injury during a car accident. /78/ She was diagnosed as being in a persistent vegetative state and, to facilitate feeding and recovery, a

8 gastrostomy tube was surgically implanted. /79/ She had been in this condition for over three years when her father, who is her court-appointed guardian, sought to move Ms. Busalacchi from Missouri to Minnesota for an evaluation of her neurological condition and probable withdrawal of her feeding tube. /80/ The guardian wanted to have his daughter evaluated by Ronald Cranford, M.D., a neurologist in Minnesota who openly advocates for the withdrawal of basic sustenance from persons with low or no cognitive functioning. Dr. Cranford has argued that a permanently unconscious person should be considered legally dead and thus have no legal rights or liberties. /81/ Moreover, Dr. Cranford testified in another case, "I might add that I have stopped fluids and nutrition on patients who were conscious, who had some degree of interaction with the environment.... So there have been quite a few situations where I have stopped fluids and nutrition in far more [ethically] difficult circumstances than the vegetative state." /82/ The state facility where Ms. Busalacchi resided objected to the guardian's attempt to move her, alleging that the guardian intended to take advantage of Minnesota's more permissive laws regarding removal of a feeding tube. The trial court denied the state's petition for injunctive relief based on its conclusion that removal of the feeding tube was not the sole purpose of the proposed move. /83/ On appeal, the Missouri Court of Appeals found that the courts have an affirmative duty to ensure that guardians act in their wards' best interests. The court held that this duty arises from the state's parens patriae power and is analogous to the court's authority to determine whether it is appropriate to move a child out of state in child custody matters. /84/ According to the court, the guardian had the burden of showing "a reasonable basis for the need to move Christine to another jurisdiction other than the desire to avoid the laws of Missouri." /85/ In determining a ward's best interest, a court should consider several nonexclusive factors: the guardian's knowledge and perception of the ward's condition, treatment, and prognosis; any potential health risks caused by a move; the need for medical care available in the other jurisdiction; the guardian's motivation for the move; the ability of a Missouri health facility to provide appropriate medical care; and the availability of family support in the new jurisdiction. /86/ The appeals court found that these "minimal restraints" would ensure that a decision to move Ms. Busalacchi from Missouri would be in her best interests. The court then summarized the issue before it as whether a guardian properly discharges his duties when he attempts to move his ward from the jurisdiction of the court for the ostensible reason of avoiding litigation in Missouri where the decision to remove the feeding tube from his ward may be subject to heightened legal scrutiny. To move his ward for that purpose may well be a breach of guardian's duties. Specifically, we will not permit guardian to forum shop in an effort to control whether Christine lives or dies. /87/

9 The court found that the record before it did not satisfy the prescribed guidelines, reversed the trial court's decision, and remanded "for the trial court to reconsider the evidence already before it and/or take additional evidence to explore the nonexclusive substantive issues." /88/ During the appeal, Ms. Busalacchi was provided with aggressive rehabilitation and made marked improvements in her cognitive functioning. A report updating the status of her condition was filed in the trial court and offered to the appellate court. The report stated that Ms. Busalacchi, previously diagnosed to be in a persistent vegetative state, could now sit up, eat orally, use a microswitch communication device to request more food, respond appropriately to requests to move a limb or look at an object or person, and interact with the people around her through eye contact and laughter. /89/ The report also noted that Ms. Busalacchi was expected to continue her improvements to the point of being capable of living in a group home. /90/ Despite Ms. Busalacchi's improvements and favorable prognosis, her guardian appealed to the Missouri Supreme Court. The supreme court upheld the court of appeals' decision to remand the case to the trial court to hear additional evidence and make findings on Ms. Busalacchi's current medical condition and on all related issues. /91/ This hearing is still pending. NLCMDD filed an amicus brief in the Missouri Supreme Court on behalf of disability rights groups who are alarmed that a guardian may be granted the authority to order the termination of assisted feeding to a nondying, nonterminally ill person with a mental disability. Even more disturbing are the continued efforts by the guardian in this case to obtain judicial approval to terminate assisted feeding and other care and rehabilitation for a person who is showing improvements. Disability advocates are convinced that this attempt to terminate care is based on a discriminatory view that the lives of persons with disabilities are not worth living. In In re Lawrance, the parents of Sue Ann Lawrance, a 42-year-old woman never competent to make her own medical decisions and diagnosed as being persistently unconscious, petitioned an Indiana trial court for authority under the Indiana Health Care Consent Act (HCCA) /92/ to remove Ms. Lawrance's feeding tube. The court granted the petition and enjoined the state and any health care providers from interfering with the parents' request. /93/ The parents transferred Ms. Lawrance to a hospice in another county, and feeding was withheld. /94/ Two weeks later, a disability rights group petitioned a second court under an Indiana emergency guardianship statute to appoint an emergency guardian for Ms. Lawrance with the authority to challenge the first court's order. /95/ The second court appointed the group's attorney as a limited guardian authorized only to seek a stay of the original order and to pursue an appeal. /96/ A stay pending appeal eventually was granted, Ms. Lawrance's feeding was restored, and the emergency guardian resigned, requesting that an attorney with NLCMDD be substituted to carry out the appeal. /97/ A new attorney was substituted as requested, and NLCMDD represented the substitute guardian on appeal. /98/ After it was filed, the appeal was immediately transferred to the Indiana Supreme Court. /99/ The guardian argued on appeal that the nontreatment order was state action that violated Ms. Lawrance's due process and equal protection rights. The guardian argued that the lower court

10 should have appointed a special advocate for Ms. Lawrance and that by authorizing the nontreatment request the lower court had denied Ms. Lawrance her right to live because she was permanently disabled. /100/ Ms. Lawrance died before oral arguments. /101/ The Indiana Supreme Court nevertheless rendered an opinion, because the issues were significant and likely to recur. /102/ The court held that the HCCA and state common law authorized family members to withhold lifesustaining care, including food and fluids, from persons unable to make their own medical decisions. /103/ The court also ruled that, when physicians and family members unanimously agreed to a course of action involving a person's treatment, judicial oversight was unnecessary, /104/ and complete immunity would follow. /105/ In addition, the court found that decisions rendered pursuant to the HCCA could not be challenged under the Indiana emergency guardianship statute. /106/ The court concluded that only health care providers or other "interested" persons could challenge a family decision to withhold treatment, and they could do so only under the HCCA. /107/ However, if the family and physicians of a patient have agreed to a course of treatment or nontreatment, then there is "no basis" for a judicial proceeding under the HCCA, according to the court. /108/ The court held that, if a dispute arises between and among nonunanimous family members and physicians, then judicial review is available. /109/ In such a case, a guardian ad litem must be appointed to represent the patient's interests. /110/ The court acknowledged that a judicial proceeding for equitable relief under the HCCA would constitute state action, /111/ and agreed with NLCMDD that an injunction to enforce a nontreatment decision would be improper. /112/ The Lawrance ruling raises several concerns for persons with disabilities. The HCCA authorizes family members to make decisions for incapacitated relatives regarding a broad range of treatments, including sterilization, /113/ tube-feeding, and all other forms of lifesustaining treatment or care. /114/ The Lawrance ruling effectively shields these decisions from oversight, making it far more difficult to protect vulnerable persons from harm. /115/ In addition, the Indiana court suggested that a decision to assist a family member's suicide might be "reasonable" and therefore permissible under the HCCA. /116/ The court defined euthanasia as "the termination of another's life by act or omission, with the specific intention... to eliminate suffering." /117/ The court concluded that, because a person in a persistent vegetative state presumably does not suffer, then an act or omission that would terminate his or her life is not euthanasia. Thus, the HCCA would permit the deliberate taking of an incapacitated person's life by act or omission, as long as the decision was based on a reason other than to eliminate suffering. Oral arguments were heard before the Wisconsin Supreme Court in In re L.W., a case involving an institutionalized man whose corporate guardian sought to have his nutrition and hydration withdrawn. /118/ L.W. had lifelong schizophrenia and never expressed his medical treatment preferences. On May 31, 1989, he suffered a cardiac arrest, and eight days later doctors diagnosed his condition as a persistent vegetative state. L.W.'s corporate guardian, L.E. Phillips Career Development Center, petitioned the Eau Claire County Circuit Court for the authority to terminate his life support, including nutrition and hydration, which the court granted. /119/ The court held that the corporate guardian could exercise its judgment for L.W. to authorize the withdrawal of his life support based on a set of 12 best interest criteria. /120/

11 L.W. died in the course of the appeal process, even though his life support had remained intact. The guardian ad litem for L.W., joined by NLCMDD as cocounsel, argued that clear and convincing evidence of a prior informed refusal by L.W. was required before the court could authorize a surrogate to withdraw life-sustaining care. The guardian ad litem also argued that, without such evidence and absent clear guidance from the Wisconsin legislature, the court should adopt a presumption in favor of life, citing In re Westchester Medical Center (O'Connor) and In re Storar as precedents. /121/ In oral argument, the guardian ad litem spoke of euphemisms that blur the reality of discrimination against individuals such as L.W. Regardless of what euphemism we should select--right to die, death with dignity, right to privacy--if it is not tied to a policy of the actual, expressed intent of the individual, within a procedure that is truly accountable to that end, it will remain but a euphemism for a quiet but systematic extermination of an entire class of human beings, based only on our subjective determination that their life does not merit protection. /122/ In In re Smerdon, a New Jersey appellate court allowed third parties to challenge a woman's petition to discontinue tube-feeding from her husband. /123/ A lower court had appointed Barbara Smerdon "special medical guardian" of her husband, who had been in a persistent vegetative state for years, with authority to order the withdrawal of a gastrointestinal tube from her husband. /124/ Mr. Smerdon's mother and sister appealed the decision and objected to the withdrawal of the feeding tube, because Mr. Smerdon "is not suffering" and because "taking away food and water is different than taking away a 'ventilator' or medication because this will definitely kill him." /125/ Barbara Smerdon argued that the intervenors did not have standing; however, the appellate court held that, when there is a dispute among family members, the guardian, and physicians, "any interested party may invoke judicial aid to ensure that the guidelines... are properly followed and that the patient is protected." /126/ The appellate court ruled that a statement made by the husband, purportedly indicating that he would want to be "pushed off the Palisades" if ever disabled, was not clear and convincing evidence of an informed refusal. Nevertheless, the court applied a substituted judgment standard, which allows a surrogate decisionmaker to be appointed to "determine and effectuate what the patient, if competent, would want." /127/ The appellate court then affirmed the lower court's appointment of Barbara Smerdon as surrogate decisionmaker because of her "closeness to her husband, knowledge of his physical condition, and knowledge of his wishes." /128/ A Minnesota case, In re Wanglie, held that the husband of an incapacitated woman was the proper person to serve as guardian to make health care decisions. /129/ Eighty-seven-year-old Helga Wanglie was in a persistent vegetative state and ventilator-dependent after a stroke. Steven Miles, M.D., a member of the Hennepin County Medical Center Ethics Committee, petitioned a court to have a "professional conservator" appointed as guardian for Mrs. Wanglie after Mrs. Wanglie's husband refused to order the removal of her ventilator. /130/ The court

12 described the issue presented by this case as "whether it is in the best interest of an elderly woman who is comatose, gravely ill, and ventilator-dependent to have decisions about her medical care made by her husband of 53 years or by a stranger." /131/ The court found that Dr. Miles had offered no evidence that Mr. Wanglie was an improper person to be guardian. /132/ Rather, it appears that Dr. Miles believed that a guardian should be appointed for the sole purpose of overriding Mr. Wanglie's decision to continue ventilator support and other care for his wife. Dr. Miles did not dispute Mr. Wanglie's competency to be guardian with regard to providing Mrs. Wanglie with food and clothing, fulfilling her social and emotional requirements, and arranging training, education, and rehabilitation. However, Dr. Miles did assert that Mr. Wanglie was not competent to make decisions about her shelter, medical care, and religious requirements, despite the fact that he had been married to Mrs. Wanglie for 53 years, shared the same "long-standing, firmly held" religious beliefs, and had "serious discussions about the meaning of life and use of life-sustaining medical treatment" with her. /133/ The court disagreed and found that Mr. Wanglie was better suited to be Mrs. Wanglie's guardian, because he "knows her conscientious, religious and moral beliefs intimately" and he understands his wife's medical condition and the medical issues involved. /134/ The court concluded that Mr. Wanglie "has shown himself to be dedicated to his wife's proper medical care," and dedicated to acting in his wife's best interest. /135/ Mr. Wanglie was appointed guardian, and Dr. Miles's petition was denied. The Supreme Court of Delaware held in Newmark v. Williams /136/ that Christian Scientist parents of a child with Burkitt's Lymphonia could refuse chemotherapy for the child because the proposed treatment had only a 40-percent chance of success and would impose highly invasive and painful burdens on the child. /137/ The court rejected a petition for temporary custody by the Delaware Division of Child Protective Services on the grounds that the child's best interests would not be served by the state's taking custody for the purpose of consenting to chemotherapy. /138/ While acknowledging that the child's "own right to life" was at stake, /139/ the court found that the state had failed to prove that chemotherapy would sustain the child's life or could be administered in a nonburdensome manner. /140/ Farnam v. CRISTA /141/ involved a nurse's claim of wrongful termination of employment at a nursing home. /142/ The nurse claimed that she had been fired because she had opposed the nursing home's approval of withholding tube-feeding from a resident. /143/ The Washington Supreme Court rejected the claim, noting that the nurse had admitted that, at the time that feeding was withheld, she believed that the decision did not violate state law. /144/ The court also found that the nursing home had complied in good faith with the procedures set out in a state law governing the removal of life-sustaining treatment. /145/ At the time that the facts giving rise to the claim occurred, the Washington courts had not yet determined whether the statute in question permitted the withholding of tube-feeding. /146/ Chief Justice Dore dissented, although he agreed with the majority that the nursing home did not violate the law as construed at the time, and that the nurse did not have a cause of action for wrongful termination of employment. /147/ Justice Dore wrote his dissent because he believed that the majority decision wrongly implied that the removal of food and fluids from

13 incapacitated persons was still permissible in Washington. /148/ He asserted that the Washington Supreme Court's decision in In re Grant /149/ had "set this issue to rest" by holding that tube-feeding must be maintained, even though other forms of life-sustaining care could be withheld. /150/ Grant was marked by an unusual switch by one of the justices after the ruling had been handed down, causing confusion as to its impact on decisions about tubefeeding. /151/ Justice Dore's dissent in Farnam provides further evidence that a plurality of justices on the court oppose the withholding of tube-feeding. /152/ IV. State Legislation In 1991, 45 states and the District of Columbia have "living will" laws that permit persons to declare that life-sustaining treatment should be withheld or withdrawn from them. /153/ States that enacted a "living will" law for the first time in 1991 include New Jersey, Ohio, Rhode Island, and South Dakota. Several others amended their laws. For example, North Dakota amended its law so that it would have no effect in "emergency or prehospital" situations. /154/ Tennessee added a provision encouraging and facilitating the harvesting of organs and tissue for transplantation. /155/ A few states, presumably in response to the United States Supreme Court's decision in Cruzan, /156/ amended their laws to apply not only to terminally ill persons, but also specifically to persons in a permanent unconscious state. /157/ The circumstances under which life-sustaining treatment may be withdrawn and the nature of the treatment or care involved varies considerably among the states. For example, 18 states specifically exclude food and fluids from "life-sustaining procedures" that can be forgone pursuant to a "living will." /158/ However, three of those states provide that artificially provided nutrition and hydration may be foregone if the declarant specifically requests such withdrawal in the document. /159/ Five states provide that the existence of a "living will" does not affect the responsibility of the physician or health care provider to provide food and fluids for a patient's comfort, care, or alleviation of pain. /160/ One state specifically excludes the oral administration of food and water from the definition of life-sustaining procedures that may be foregone. /161/ Two states do not allow food and fluids to be withheld if death would result from malnutrition or dehydration. /162/ Six states provide for a specific indication in a "living will" declaration of whether or not "artificially" provided food and fluids should be provided. /163/ One state allows for an explicit statement of intent in this regard, but, when intent is not stated, then "reasonable medical practice" includes oral administration of food or water to a patient who accepts it. /164/ The "living will" laws of the remaining 13 states and the District of Columbia do not make any explicit reference to the provision of food and fluids. /165/ Twelve state laws provide that when no living will has been executed surrogate decisionmaking is permitted. /166/ Considerable development has occurred in legislation regarding durable power of attorney for health care. In 1991, 25 states and the District of Columbia had durable power of attorney statutes that permitted a person to appoint a surrogate to make medical treatment decisions, including the withdrawal of life-sustaining treatment. /167/ Eight states had durable power of attorney laws that allowed an appointed surrogate to make health care decisions, but not decisions to withdraw life-sustaining care. /168/ Ten states' durable power of attorney laws did not apply to any type of health care decisions. /169/ In five other states, case law and attorney

14 general opinions interpreted the durable power of attorney law to include surrogate authority to withdraw life-sustaining care. /170/ One other state would allow a surrogate appointed under the durable power of attorney statute to withdraw life-sustaining treatment if the patient had previously executed a living will requesting such a withdrawal. /171/ In a separate but related area of legislation regarding health care decisionmaking, two states in 1991 were unique in having specific statutory provisions creating the presumption that every incompetent person wishes to receive food and fluids necessary to sustain life, unless the person has clearly indicated otherwise or unless certain specified and limited conditions exist. /172/ footnotes 1. See Pub. L. No , Secs and 4751, 104 Stat to -117 and -204 to (1991) (codified at 42 U.S.C. Secs. 1395i-3(c)(1)(E), 1395l(r), 1395cc(a)(1)(Q), 1395cc(f)(1), 1395bbb(a)(6), 1396(m)(1)(A), 1396aa(a)(57), 1396aa(a)(58), 1396a(w), and 1396r(c)(2)(E) (Supp. 1991)) U.S.C. Secs. 1395cc(f)(1) (Medicare) and 1396a(w) (Medicaid) (Supp. 1991). 3. Id. at Secs. 1395cc(a)(1)(Q) and 1396a(a)(57). 4. Id. at Secs. 1395cc(f)(1)(B) and 1396a(w)(1)(B). 5. Id. at Secs. 1395cc(f)(1)(D) and 1396a(w)(1)(D). 6. Pub. L. No , Secs. 4206(e) and 4751(c), 104 Stat and -206) (not codified) U.S.C. Secs. 1395cc(f)(1) and 1396a(w)(1) (Supp. 1991). 8. Id. at Secs. 1395cc(f)(1)(C) and 1396a(w)(1)(C). 9. Pub. L. No , Secs. 4206(c) (not codified) and 4751(a)(4) (codified at 42 U.S.C. Sec. 1396a(w)(3) (Supp. 1991)). 10. Id. at Sec. 4751(d), 104 Stat (not codified) U.S.C. Sec. 1396a(a)(58) (Supp. 1991). 12. Id. at Secs. 1395cc(f)(1)(A)(i) and 1396a(w)(1)(A)(i). 13. Id. at Secs. 1395cc(f)(1)(E) and 1396a(w)(1)(E).

15 14. See Bopp & Marzen, Cruzan: Facing the Inevitable, 19 L. MED. & HEALTH CARE 37, (1991). 15. The Omnibus Budget Reconciliation Act of 1990: An Analysis of Health Related Provisions, 167 HEALTH ADVOC. 20 (Winter 1991). 16. Pub. L. No , 104 Stat. 327 (1990). 17. Nondiscrimination on the basis of disability by public accommodations and in commercial facilities, 56 Fed. Reg (July 26, 1991) (to be codified at 28 C.F.R. Part 36); nondiscrimination on the basis of disability in state and local government services, 56 Fed. Reg (July 26, 1991) (to be codified at 28 C.F.R. Part 35). 18. Id. at (to be codified at 28 C.F.R. Sec ); Id. at (to be codified at 28 C.F.R. Sec ). 19. Id. at and Id. 21. Id. at and Id. 23. Id. 24. The ADA and the Department of Justice Rules exclude the following conditions from the definition of "disability": transvestism, transsexualism, pedophilia, exhibitionism, voyeurism, gender identity disorders not resulting from physical impairments or other sexual behavior disorders, compulsive gambling, kleptomania, pyromania, psychoactive substance use disorders from current illegal use of drugs, homosexuality, and bisexuality. See Americans with Disabilities Act of 1990, Pub. L. No , Secs. 508, 510, and 511, 104 Stat. 327, 373, (1990). 25. See 135 CONG. REC. S10765 (daily ed. Sept. 7, 1989) (colloquy between Sen. Harkin and Sen. Helms). 26. Some ethicists argue that these conditions are not forms of disability. See Discrimination law clashes with bioethics over PVS, 7 MED. ETHICS ADVISOR 81 (1991). 27. Organic brain syndrome consists of a "large group of acute and chronic mental disorders associated with brain damage or impaired cerebral function." TABER'S CYCLOPEDIC MEDICAL DICTIONARY 1173 (15th ed. 1990) Fed. Reg , (July 26, 1991) (to be codified at 28 C.F.R. Secs (c)(1) and (e)(1)).

16 29. Id. (to be codified at 28 C.F.R. Secs (c)(2) and (e)(2)). 30. Id. at 35558, Id. 32. See generally Dougherty, A Conference Report: Setting Health Care Priorities; Oregon's Next Steps, Hastings Center Rep., May-June 1991, Supp. at 1; Hadorn, The Oregon Priority- Setting Exercise: Quality of Life and Public Policy, Hastings Center Rep., May-June 1991, Supp. at 11; OR. REV. STAT. Secs (1989); 1991 Or. Laws Dougherty, supra note 32, at Egan, Oregon Shakes Up Pioneering Health Plan for the Poor, N.Y. Times, Feb. 22, 1991, at A11, col Hadorn, supra note 32, at Id. at 13, "Normal" health was ranked at 1 and death at -1, with various levels of impairment represented by negative fractions. Id. at The Commission employed the "quality-adjusted life year" approach, which "permits integration of the quality-of-life effects of treatment with its associated impacts on life expectancy." Id. at Id. at Id. at Balzar, Oregon's New Medical Plan Seeks to Ration Treatment, L.A. Times, July 1, 1991, at 1A, col Kinsey-Hill, New Health Program Awaits U.S. Approval, Oregonian, July 2, 1991, at B-8, col The legislature voted to fund 587 of the 709 treatments on the list. Id Or. Laws 836, Sec Dougherty, supra note 32, at Id. at Johnson v. Gross, No A (W.D. Okla. Feb. 8, 1990), notice of appeal filed, No (10th Cir. Mar. 8, 1990) (Clearinghouse No. 40,228).

17 48. Gross, Cox, Tatyrek, Pollay, & Barnes, Early Management and Decision Making for Treatment of Myelomeningocele, 72 PEDIATRICS 450 (1983). 49. Id. at Id. 51. Johnson v. Gross, No (appellants' brief). 52. United States v. University Hosp., 729 F.2d 144 (2d Cir. 1984). 53. McKay v. Bergstedt, 801 P.2d 617, 620 (Nev. 1990) (Clearinghouse No. 46,126). 54. Id. 55. Id. at , Id. at Id. at Id. 59. Id. at Id. 61. Id. 62. Id. at Id. at Brief amicus curiae on behalf of American Disabled for Access and Power Today of Southern California, McKay v. Bergstedt, 801 P.2d 617 [hereinafter Bergstedt amicus brief]. The motion for leave to file a brief amicus curiae was denied because Mr. Bergstedt's attorney refused to consent to the filing. 65. Bergstedt, 801 P.2d at & n.6 (Springer, J., dissenting) (quoting Bergstedt amicus brief at 8). 66. Id. at 635 (quoting Bergstedt amicus brief, supra note 64, at 11) (emphasis added by Justice Springer). 67. Id. at 635.

18 68. Cruzan v. Director, Mo. Dep't of Health, 110 S. Ct (1990) (Clearinghouse No. 44,045). 69. Cruzan v. Mouton, No. CV 384-9P (Mo. Cir. Ct., Jasper County, Dec. 14, 1990); Transcript of Proceedings, Cruzan v. Mouton, No. CV 384-9P (Mo. Cir. Ct., Jasper County, Mo., Nov. 1, 1990) [hereinafter Cruzan transcript]. 70. Cruzan v. Mouton, No. CV 384-9P, slip op. at Id. at See Burial Is End to Long Goodbye for Nancy Cruzan, N.Y. Times, Dec. 29, 1990, at 1, col See generally Cruzan transcript, supra note Id. at 38, 81, Id. at 37, 41, Id. at Cruzan v. Harmon, 760 S.W.2d 408, 424, quoting In re Jobes, 108 N.J. 394, 412, 529 A.2d 434, 443 (1987) (Clearinghouse No. 41,994) (citing In re Conroy, 98 N.J. 321, 366, 486 A.2d 1209, 1232 (1985)); Brief of the Medical Issues Task Force of the United Handicapped Federation and the Ethics and Advocacy Task Force of the Nursing Home Action Group as Amici Curiae at 7-8, Cruzan v. Mouton, No. CV 384-9P (Mo. Cir. Ct., Jasper County, Dec. 14, 1990). 78. In re Busalacchi, No , slip op. at 1 (Mo. Ct. App. Mar. 5, 1991) (Clearinghouse No. 46,370). 79. Id. at Id. at Cranford & Smith, Consciousness: The Most Critical Moral (Constitutional) Standard for Human Personhood, 13 AM. J. L. & MED. 233, 241, 247 (1987). 82. Cruzan v. Harmon, No. CV38-9P (transcript). 83. Busalacchi, No , slip. op. at Id. at Id. at

19 86. Id. at Id. at Id. at Report to the Probate Division Concerning the Status of Christine Busalacchi, An Incapacitated/Disabled Person, In re Busalacchi, No (Mo. Cir. Ct., St. Louis County, Feb. 4, 1991). 90. Id. 91. In re Busalacchi, No (Mo. Sup. Ct. Oct. 16, 1991). 92. IND. CODE ANN. Secs to -12 (West Supp. 1990). 93. In re Lawrance, No. 29D GU (Ind. Cir. Ct., Hamilton County, May 2, 1991). 94. In re Lawrance, 579 N.E.2d 32, 36 (Ind. 1991). 95. Id. at Id. 97. Id. 98. Id. 99. Id In re Lawrance, 579 N.E.2d 32 (brief of appellant Daniel Avila, Temporary Limited Guardian for Sue Ann Lawrance) Lawrance, 579 N.E.2d at Id Id. at Id. at Id Id. at Id.

20 108. Id Id. at Id. at n Id. at 41 n Id See Lulos v. State, 548 N.E.2d 173 (Ind. Ct. App. 1990) Lawrance, 579 N.E.2d at The ruling effectively prevents a court from reviewing "unanimous" decisions to determine whether the agreed course of action is in the patient's best interest Lawrance, 579 N.E.2d at Id. at 40 n In re L.W., No (Wis. Sup. Ct. filed Apr. 19, 1991) In re L.W., No , at 3-4 (appellant's brief) Id. at Id. at Attorney Presses for Ruling in Right-to-Die Case, Milwaukee J., Sept. 5, 1991, at A-16, col In re Smerdon, No. A T1, slip op. (N.J. Super. Ct. App. Div. Apr. 8, 1991) (per curiam) Id. at Id. at Id. at Id Id In re Wanglie, No. PX (Minn. Cir. Ct., Hennepin County, July 1, 1991).

21 130. Id. at Id. at 5 (incorporating attached Memorandum at 1) Id. at Id. at Id. at Id. at 5 (incorporating attached Memorandum at 2) Newmark v. Williams, 588 A.2d 1108 (Del. 1991) Id. at Id. at Id. at Id. at Farnam v. CRISTA, 116 Wash. 2d 659, 807 P.2d 830 (1991) Id. at 662, 807 P.2d at Id. at 666, 807 P.2d at Id. at 670, 807 P.2d at Id Id. at 683, 807 P.2d at 842 (Dore, C.J., dissenting) Id Id In re Grant, 109 Wash. 2d 545, 747 P.2d 445, modified, 757 P.2d 534 (1987) Farnam, 116 Wash. at 683, , 807 P.2d at 842, See Note, In re Grant: Where Does Washington Stand on Artificial Nutrition and Hydration?, 13 U. PUGET SOUND L. REV. 197 (1989) Farnam, 116 Wash. at 685 n.2, 807 P.2d at 843 n.2.