Third Appellate District No. C029439





















Max Lapertosa, Esq., Cal. Bar No.189492

Stephen F. Gold, Esq.

Public Interest Law Center of Philadelphia

125 South Ninth Street, Suite 700

Philadelphia, PA 19107

Tel: (215) 627-7100

Diane Coleman, Esq.

Amy Hasbrouck, Esq.



Not Dead Yet is a national grassroots organization of people with disabilities formed in response to the increasing popularity of, and laws permitting, physician assisted suicide and euthanasia in the United States and around the world. Not Dead Yet's mission is to advocate against legalization of physician assisted suicide and euthanasia, and to bring a disability-rights perspective and awareness of the effects of discrimination to the legal and sociological debate around euthanasia and physician assisted suicide. Formed in 1996 in Illinois, Not Dead Yet has worked to educate, support, coordinate and lead the disability community's effort to stop the "right to die" from becoming a duty to die or a right to kill. While it is impossible to determine how many people with disabilities, family members and allies, call themselves members of Not Dead Yet, members have undertaken specific activities in the name of the organization and in support of its mission in at least 30 states. Not Dead Yet's amicus brief, with co-amici ADAPT, filed in the U.S. Supreme Court in the case of Vacco v. Quill, 117 S.Ct. 2293 (1997), was among a handful, out of over 60 such briefs, cited by the high Court in its final opinion. Not Dead Yet has given invited testimony before the U.S. Congress three times, once before the U.S. Senate Judiciary Committee and twice before the Constitution Subcommittee of the U.S. House of Representatives. When Not Dead Yet members attended the long awaited 1999 trial of Jack Kevorkian (the first after three years of non-prosecution, and scores of assisted suicides of people with non-terminal disabilities) and silently demanded the equal protection of the law, he was convicted. In contrast to the extensive paid staff, legal and lobbying resources available to the pro-euthanasia movement in the U.S., and their affiliates worldwide, Not Dead Yet has one paid staff member. With members who also work on the front lines of the class struggle for access to health care and home and community based long-term care services, almost all of Not Dead Yet's activities, including this brief, are the work of volunteers.


ADAPT and SABE are two national organizations, most of whose members have severe disabilities and many of whom have been institutionalized in nursing facilities and other public institutions solely because they have disabilities. ADAPT members include persons with spina bifida, cerebral palsy, muscular dystrophy, spinal cord injuries, multiple sclerosis, quadriplegia, paraplegia, head and brain injuries, polio, amyotrophic lateral sclerosis, as well as many other disabilities. Most of these persons use assistive devices, including motorized and manual wheelchairs, ventilators, and personal assistance services for meeting their personal needs. SABE'S members are people with cognitive disabilities who support each other and live in integrated community settings. Both organizations' national mission is to establish the civil rights of all individuals to choose to live in their homes and communities, rather than be forced into nursing homes and other institutional settings. Both have a long history and record of enforcing the civil rights of people with disabilities and was one of the key organizations that participated in the political and legislative process that resulted in the passage in 1990 of the Americans with Disabilities Act, 42 U.S.C. Sec. 12101 et seq. ("ADA"). See ADAPT v. Skinner, U.S. Dep't of Transp., 867 F.2d 1471, 881 F.2d 1184 (3d Cir. 1989).


The Arc of the United States (The Arc), through its nearly 1,000 state and local chapters, is the largest national voluntary organization in the United States devoted solely to the welfare of the more than seven million children and adults with retardation and their families. Since its inception, The Arc has vigorously challenged attitudes and public policy, based on false stereotypes, which have authorized or encouraged discrimination against people with mental retardation in virtually all areas of life. The Arc was one of the leaders in framing and supporting passage of the Americans with Disabilities Act (ADA).

The Arc has extensive experience in addressing issues regarding withholding of medical treatment and has found that people with retardation sometimes die because doctors, parents and other decision-makers impose do-not-resuscitate orders or refuse to authorize medical treatment or provide food and/or water. These decisions are often based on the disability itself, on the perceived "poor quality of life" of the individual, or for economic reasons, rather than on the individual's medical condition. The Arc was instrumental in development of the so-called Baby Doe amendments to the Child Abuse Amendments of 1984, which protect newborns with disabilities in very similar circumstances as the case before the court. In addition, in 1983, in collaboration with other national organizations, The Arc developed the "Principles of Treatment of Disabled Infants." The Arc's position statement on medical and dental treatment states, in part, that "a person's mental retardation or degree of disability must not be a factor in the decision to provide or withhold medical or dental treatment. Withholding or withdrawing treatment based on disability alone is illegal and can never be condoned. The individual's medical condition and welfare must be the basis of the decision."


The Brain Injury Association, Inc. is a national non-profit organization whose mission is to create a better future through brain injury prevention, research, education and advocacy. The Association has 43 affiliates in 43 states. There are 5.3 million people with brain injuries causing permanent effects in the U.S., and there are an estimated 2 million sustaining some form of brain injury each year. The Association values and respects the dignity and worth of all people in a true spirit of inclusion. The Association believes that people with brain injury should have opportunities to be full participating members of their community. The Association promotes progressive public policy and respond to issues with integrity and courage. This amicus brief is in line with the mission and principles of the Association.


The Center for Self-Determination is a national organization comprised of individuals with disabilities, family members and professionals committed to the principles of self-determination: freedom to choose where one wants to live and with whom, as well as what important things one will do with one's life; authority and control over the dollars necessary for long term supports; support to craft the supports needed in ways that are unique to the individual with a disability; and responsibility for both the wise use of public dollars and for contributing to one's community.

The Center is committed to supporting new leadership at the local, state and national level among individuals with disabilities (especially those with cognitive disabilities), family members and allies in the pursuit of changing the system of long term care to reflect the freedoms lost to individuals currently served by this system. The Center also provides training and technical assistance on systems change issues, including Medicaid, the use of fiscal intermediaries, the design of personal budgets and the creation of alternatives to traditional notions of guardianship. The Center's view is that paternalistic notions of "incompetence" need to be replaced by a new ethical and legal foundation that promotes "assisted



The Center on Human Policy is an interdisciplinary disability research and policy institute at Syracuse University. Established in 1971, the Center's work focuses on people with cognitive disabilities. The Center's research has included studies of institutions, schools, and community services, the history of the treatment of people with disabilities in America, disability law and policy, images of disability in the media and popular culture, and the politics and ethics of various treatment options.

The Center is aware of the historical pattern of discrimination against people with disabilities in Western societies. Adults and children with disabilities, and especially those with cognitive disabilities, have been subjected to segregation, school exclusion, involuntary sterilization, restrictions on marriage, denial of medical care, unethical medical experimentation, and, in extreme cases, euthanasia. The Center opposes withholding life sustaining treatment, nutrition and hydration, and routine medical care from any individual without that individual's explicit and informed consent. Further, although the Center respects the role that family members can play in assisting and supporting persons with cognitive disabilities, the Center is aware that family members have not always acted in the best interests of such persons in life and death matters.


The Disability Rights Center (DRC), based in Washington, D.C, is a not-for-profit organization that was founded in 1978. Its mission is to enable people with disabilities to improve the quality of their lives, determine their own lifestyles, participate in all aspects of society, secure their human and civil rights, meet their responsibilities as citizens and to provide a mechanism for consumer control and policy direction of the systems that impact upon their lives. The notion of each person with a disability's choice about and control over his/her life is essential in securing civil and human rights. It is ten years after the passage of the Americans with Disabilities Act. The Board of Directors and staff of DRC firmly believe that for any court to decide that a surrogate has the power to decide to remove food, water and medical and rehabilitative treatment from a person with a disability is contrary to self-determination and choice and shows a devalued stereotype of people with disabilities. People with disabilities have civil rights that can be compared to those of African-Americans and women. The court should be no more inclined to award a relative or surrogate the right to deny food, water and medical rehabilitation and thereby life to a person with a disability than it would allow the non-voluntary killing of any other minority member.


The National Council on Independent Living (NCIL) is the oldest cross-disability, grassroots organization run by and for people with disabilities. Founded in 1982, NCIL represents over 700 organizations and individuals including: Centers for Independent Living (CILs), Statewide Independent Living Councils (SILCs), individuals with disabilities, and other organizations that advocate for the human and civil rights of people with disabilities throughout the United States.

NCIL promotes a national advocacy agenda set by its membership. NCIL also provides its membership, Congress, Federal agencies and the general public with educational materials related to national disability polices and laws.

The independent living philosophy holds that individuals with disabilities have the right to live with dignity and appropriate supports in their own homes, to participate in their communities, and to control and make decisions about their lives, regardless of the degree of disability. NCIL firmly believes that no surrogate, guardian, or family member should be empowered to make decisions for a person with a disability without full protection of the individual's fundamental and civil rights. This principle is all the more crucial when it applies to life and death.


Founded in 1948, the National Spinal Cord Injury Association, Inc. ("NSCIA") is the largest civilian organization in the United States dedicated to improving the quality of life of persons with spinal cord injury and disease. The NSCIA has established a network of over 40 chapters and support groups nationwide for people with spinal cord injuries and disease ("SCI/D"), their families, and the professionals involved with their care. It also operates a national toll-free hotline which fields thousands of inquiries each year from newly injured individuals and others, promotes peer counseling groups, and maintains the largest and most current resource center on spinal cord injury and disease in the world.

The NSCIA's formal mission is "to enable people with SCI/D to make choices and take actions to achieve their highest level of independence and personal fulfillment." The organization has a unique knowledge of, and experience with, many of the core issues involved in this case. Spinal cord injury is regarded by some as constituting one of the most debilitating and tragic of human conditions. Cases of extreme spinal cord injury, have been cited as illustrating the type of impairment which may warrant or support a desire to hasten death. The NSCIA believes that the option of expediting death should never be considered an attractive public policy for society at large or for members of the disability community in particular. Instead, the more laudable goal is to improve health care services, treat and manage pain more aggressively, and provide individuals with more resources and support, so that death is never regarded by them or their representatives as necessary or desirable. Owing to its purpose and mission, the NSCIA promotes all reasonable efforts to improve the quality of life for all persons, regardless of their health and abilities. The NSCIA opposes all attempts to promote or secure the "benefit" of a right to die or kill.


TASH is an international association of people with disabilities, their family members, other advocates, and professionals fighting for a society in which inclusion of all people in all aspects of society is the norm, with over thirty chapters and members from thirty-four different countries and territories. Since its inception over twenty-three years ago, TASH has worked as a civil rights organization for, and of, people with mental retardation, autism, cerebral palsy, physical disabilities and other conditions that make full integration a challenge. A major issue to which we devote ongoing effort, is the abolishment of the use of aversive procedures---electric shock, water sprays, forced inhalation of ammonia and ingestion of pepper sauce, and pinching and hitting---to control the behavior of children and adults with disabilities. People with disabilities, by virtue of their disability, are often unable to speak out against abuses that would not be tolerated if they were imposed on the elderly, school children, prisoners, or even animals. We have provided testimony and legislative advocacy concerning the right of medically fragile newborns to life-sustaining support and medical treatment.



On September 29, 1993, Robert Wendland, then age 42, was involved in a vehicle accident. He was in a coma for 16 months. In January 1995, Mr. Wendland came out of the coma, but he remains severely cognitively impaired. He is paralyzed on the right side. He communicates using a "Yes/No" communication board. He receives food and fluids through a feeding tube. During rehabilitation, he has been able to do such activities as grasp and release a ball, operate an electric wheelchair with a "joystick," move himself in a manual wheelchair with his left hand or foot, balance himself momentarily in a "standing frame" while grabbing and pulling "thera-putty," draw the letter "R," and choose and replace requested color blocks out of several color choices.

The Probate Court appointed Robert Wendland's wife, Rose, as conservator of his person under the Probate Code. Rose sought authorization from the court to remove the feeding tube, thereby starving him to death. Robert's mother (Florence Wendland) and sister (Rebekah Vinson) objected.

After presentation of Rose's case in chief, the Probate Court granted Florence's motion for judgment (Code Civ. Proc., § 631.8), concluding that although Robert had a right to refuse the feeding tube, a right which survives his incompetence, Rose had failed to show by clear and convincing evidence that Robert, if competent, would want the feeding tube removed, or that withdrawal of the tube was in his best interests.

Rose appealed, and the Appellate Court concluded the Probate Court erred in requiring Rose to prove that Robert, while competent, expressed a desire to die in these circumstances and in substituting its own judgment concerning Robert's best interests, rather than limiting itself to a determination of whether the conservator considered Robert's best interests and met the other statutory requirements of section 2355. Mr. Wendland's mother and sister appealed that ruling to the California Supreme Court.


Wendland comes at a crucial time in U.S. social history as we confront issues related to allocation of health care resources, human rights and liberties, advancing technology and an aging population. Mr. Wendland's situation, involving significant cognitive disabilities and reliance on others for basic needs, is not unique, and will become increasingly common. The issues his case presents must be resolved using a progressive analysis that carefully considers the policy implications involved. Society must not give surrogate decision-makers virtually unfettered authority to kill.

A. California courts have an important role to play in establishing national legal precedent and policy.

California cases such as Bouvia v. Superior Court, 179 Cal. App. 3d 1127 (1986), Conservatorship of Drabick, 200 Cal. App. 3d 185, 1988, and Donaldson v. Lungren, 2 Cal. App. 4th 1614 (1992) have been very influential in establishing principles in this area of the law. Wendland presents an opportunity for the California Supreme Court to lend its substantial weight either to a progressive position which recognizes the effects of prejudice and discrimination in health care decision-making, or to ignore these realities and allow a narrow-minded view of human value and economic expediency to dictate who may live or die.

B. The current decision, and the statute it interprets,

have extremely broad implications for public policy.

The implications of this case and the statute as amended are immensely broad. The statute, as interpreted by the Appeals Court's decision, permits a surrogate to withhold food and water from any person under their stewardship, even over their expressed objection. This affects not only persons who are terminally ill or permanently unconscious, but all adults with many kinds of cognitive disabilities, including dementia, as well as children with and without disabilities. This case could also affect people who lack capacity to communicate by standard means, and who have no one to question the acts of an appointed conservator on their behalf. The California law as interpreted by the Appellate Court places persons with cognitive and speech impairments in a very precarious position. By shifting from the usual presumption in favor of life and requiring such persons to assert affirmatively an objection to the intentions of the conservator, while at the same time depriving them of the means to register an objection or veto a conservator's decision except through a third party advocate, the Appeals Court renders impossible any assertion by the conservatee of his/her wishes that run contrary to the will of the conservator. Under the amended statute and appellate ruling, a conservatee could plead for food and water and be denied it.

The Appeals Court decision here crosses many legal and moral thresholds which, taken together, should not be traversed. The ruling would subject a conscious person with a cognitive and/or speech disability and no terminal or life-threatening illness to the will of a conservator to withhold food and water with little or no regard to that person's prior-stated or current preference, and the extreme risk that the conservator's interests will be the primary or only interests served. Finally, the statute as amended would codify the expanding proposition that food and water are medical treatments that can be withdrawn even when they are not burdensome (which they may become in the final stages of some terminal illnesses), and that surrogate decisions for withholding or withdrawing treatment are the same as administering medical treatment, even if the decision kills a conscious person who is not asking to die.

Amici challenge both the appellate ruling and the amended statute as unconstitutional, as denials of due process, as well as violations of the Americans with Disabilities Act.



A. The Court of Appeals decision contains several examples of language conveying the kind of prejudice described in the U.S. Civil Rights Commission's Spectrum report.

"He wears diapers."

"Each activity is performed only after excruciatingly repetitive prompting and cueing by the therapists."

"Robert never smiles."

"What little emotion he does show is negative and combative."

The Court of Appeals so described Mr. Wendland. These statements convey assumptions about Mr. Wendland's capacity as a person with a disability, and his quality of life, that are based on stereotypes, fear, and prejudice. The implication is that incontinence justifies devaluing Mr. Wendland's life to the point of allowing him to be killed. Rather than recognizing his work during rehabilitation, his accomplishments and abilities, the court emphasizes the "excruciatingly repetitive prompting" required to enable him to do these very difficult tasks. The use of the word "excruciatingly" indicates a frustration residing in the witness or prompter rather than the promptee. Finally, the Court of Appeals has imposed a behavioral standard on Mr. Wendland by the court (to "smile" and show non-negative emotions), however natural these emotions may be. If he does not comply, for whatever reason, including possible negative reactions to the consequences of his conservator's decisions, does that make his life less valuable to the court?

B. The Appeals Court fails to acknowledge a distinction between the self-awareness, environmental sensitivity and cognitive abilities of those who are and are not conscious

In Drabick, 200 Cal. App. 3d 185 (1988), the Court of Appeals specifically limited its ruling to persons in a persistent vegetative state, a form of permanent coma which should not be confused with cognitive disability. However, the Appeals Court decision in Wendland dismisses the difference between a conscious and an unconscious person as irrelevant, saying both are incompetent and therefore cannot exercise the right to make decisions on their own behalf. The appellate decision therefore extends all of the principles outlined in Drabick – designed for an unconscious person – to conscious and aware people. By doing so, the Court removes one clear demarcation in this difficult area of law – alertness, sensitivity and reaction to environment – and opens the pool of candidates for starvation to anyone who is conscious and is deemed incompetent.

After discussing how earlier courts have differentiated between "cognitive" and "sapient" life, the Appeals Court does not make a clear distinction between the two terms. "We will conclude the point of inquiring about return to cognitive and sapient life is to determine whether the conservatee may regain the capacity to make his or her own decision." The Court acknowledges that Mr. Wendland is conscious and does experience his environment, but nevertheless insists that whatever capacity Mr. Wendland has to identify and assert his preferences is irrelevant.

Consciousness and cognitive abilities are on a continuum. In different circumstances, people have different capacities to manage various aspects of their lives. Even people with severe impairments can express preferences as to their environment, which Robert Wendland has done. Yet the court ignores such indicia of preference, choosing to give more credibility to drunken declarations of the past than sober actions in the present, such as Mr. Wendland's participation in rehabilitation. The Appeals Court would impose a requirement that a person with a disability assert that they do not wish to die. It is only Mr. Wendland's disabilities which prompt the Court to add this requirement . For no other class of people would "starvation" be deemed an appropriate course of medical care.

C. Food and water should not be considered "medical treatment" for a person who is conscious.

Outside of persons in a permanent coma or a terminal illness, courts have not held food and water to be "medical treatment." Cruzan v. Director, Missouri Dep't of Health, 497 U.S. 261, 283 (1990)(limiting consideration to "person[s] diagnosed to be in a permanent vegetative state"). The Court of Appeals goes much further, authorizing the withholding of food and water even for people who are conscious and whose only "disease" is, in fact, cognitive and physical disabilities. In Mr. Wendland's case, there is no underlying disease or life-threatening medical condition.

The Court of Appeals has extended the line the U.S. Supreme Court drew in Cruzan in a manner that affects more and more people with disabilities. Amici ask: Is pureeing food a medical treatment for a person who cannot eat solid food? Therefore, under the Appellate Court's ruling, could pureed food be withheld from an elderly person who needs it to survive? When Medicaid pays for a personal assistant to help a person with quadriplegia eat, is that a medical treatment? Is giving liquid food through a tube in the mouth (a straw) a medical treatment? What if the tube is placed in the nose? In the throat? When does it stop being food and start being medicine? Can a surrogate similarly refuse a urinary catheter tube needed for waste elimination? The answers to these questions may have life-threatening implications for amici.

D. The California statute gives extremely broad powers to conservators without adequate opportunity for representation and due process for conservatees.

The Appeals Court decision describes a legal paradigm, which gives a conservator power to make medical decisions over the objections of an "incompetent" conservatee, but severely limits the means by which such objections can be expressed. This is typical of the legally constructed voicelessness of people with cognitive disabilities. The only way that the Court would examine the conservator's decision is if a third party advocate challenges it. If the conservatee is unable to communicate using speech or writing, making a complaint in court will be difficult indeed. The Court assumes that family members or other "interested parties" would challenge the conservator's decision. The burden of proof has shifted against the lives of all such individuals.

The Court's decision accepts Rose Wendland's argument that the conservator speaks with the voice of the ward they represent. The Court makes nodding acknowledgement to possible conflicts of interest between conservators and conservatees, but does not recognize the potential deadly effects of prejudice and conflicted interest, or the implications of the rampant documented abuse of older and disabled people in this society, mostly by family.

Passive euthanasia previously raised serious questions about misguided quality of life judgments, and became a topic in a 1989 report of the U.S. Civil Rights Commission entitled "Medical Discrimination Against Children With Disabilities." Among the information considered by the Commission was an experiment conducted from 1977 to 1982 at the Children's Hospital of Oklahoma. Doctors there developed a "quality of life" formula for babies with spina bifida that took into account the socioeconomic status of the baby's family to determine what to advise them about a simple but life-and-death procedure. Better-off families were provided a realistic and optimistic picture of their child's potential, while poor families were provided a pessimistic picture. Four out of five poor families accepted the doctors' advice and twenty-four babies lost their lives. A number of studies have demonstrated that family decision-makers do not question medical advice. At the same time, physicians' "quality of life" judgments are not trustworthy, especially when combined with the financial incentives built into managed care.

Finally the Appeals Court decision relies on adequate representation by counsel in its assumption that the conservatee's rights will be adequately expressed and represented. Again, where appointed counsel may hold the same stereotypes about life with a disability, the client's safety cannot be presumed.

E. "Recovery" as a requirement for life-sustaining treatment

"‘Life-sustaining treatment is not "necessary" under . . . section 2355 if it offers no reasonable possibility of returning the conservatee to cognitive life and if it is not otherwise in the conservatee's best interests, as determined by the conservator in good faith.'" This requirement has the familiar ring of a managed care plan, where treatment needed to maintain a disabled person in the best possible condition and comfort is denied if "measurable improvement" cannot be demonstrated.

V. The Amended Statute Violates the Americans With Disabilities Act.

The amended statute presents a clear violation of Titles II and III of the Americans with Disabilities Act, 42 U.S.C. Secs. 12131 et seq. & 12181 et seq. Tube feeding is used for people who cannot swallow (one form of disability), or people who must eat slowly to avoid inhaling food and, therefore, require more time and assistance to do so (another form of disability) than health insurance is willing to pay for. Any such person who is also deemed "incompetent" due to cognitive or communication disabilities could be deprived of food and water by a conservator. Aside from the question of whether the conservator's actions are, in part, state actions, health professionals subject to Title III and public officials subject to Title II would be required under the amended statute to set aside their legal duties to prevent abuse and neglect in favor of a conservator's decision, simply based on the conservatee's disability. No legal sophistry can erase the fact that the statute proposes to allow all of these actors to treat people with these severe disabilities in a way that would never be acceptable for any other class of people. The amended statute violates the ADA.

VI. Conclusion

This Court must recognize that California acknowledges that prejudice and stereotypes continue to have an adverse effect on this minority population. This prejudice is revealed in actions taken throughout the various branches of government, as well as by individuals who are appointed by the state to speak on behalf of people whom the Courts declare incompetent.

This is an argument for true self-determination, which includes a full range of life-options and genuine supports for people with disabilities, as well as their families. The courts, and conservators they appoint, must not succumb to or perpetuate the belief that taking a disabled person's life is in his/her best interest. Courts must recognize the limitations of definitions, procedures and laws involving "competency" to make decisions. These have been subject to abuse and mistake too often to be accepted at face value. Courts must also recognize conflicts of interest between conservators and conservatees, as well as between physicians and patients in a health care system dominated by managed care.

Courts must re-think what it means to feed someone, why some methods of feeding constitute "medical treatment" and others do not. It is inaccurate and disingenuous to say that a person who dies of starvation is dying from the natural course of a disease when there is no disease present. A statute which allows a private or public conservator or guardian to withhold food and water from a conscious person with cognitive and/or speech disabilities, in the absence of a living will or durable power of attorney, and even over that person's objection however it is expressed, cannot be allowed to stand.

Date: October 10, 2000 Respectfully Submitted,

Max Lapertosa

California Bar No. 189492

Stephen F. Gold, Esq.



Diane Coleman, Esq.

Amy Hasbrouck, Esq.


By: Max Lapertosa