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The ethics of PAS: Morally relevant relationships between personal assistance services and physician-assisted suicide

      Abstract

      Batavia AI. The ethics of PAS: morally relevant relationships between personal assistance services and physician-assisted suicide. Arch Phys Med Rehabil 2001;82 Suppl 2:S25-31. Although personal assistance services would appear to have no direct connection to the national debate over legalization of physician-assisted suicide, arguments relating to personal assistance have been raised in the debate. Independent living opponents of a right to assisted suicide contend that people with disabilities who do not have access to the basic personal assistance services they need are inherently oppressed, and a society that provides a right to assisted suicide is essentially an accomplice in coercing such individuals to end their lives. Independent living proponents of the right argue that people with disabilities should have control over the assistance they need to achieve all their goals, and access to desired assistance in seeking death may allow some to decide to forgo or postpone what would otherwise be a desperate act. Both sides would agree that personal assistance services are extremely important to people with disabilities, and that universal access to such services will eliminate a major area of contention in the right-to-die debate in the United States. © 2001 by the American Congress of Rehabilitation Medicine

      Keywords

      Many people would at first blush conclude that the only similarity between personal assistance services and physician-assisted suicide is their acronym, PAS. What 2 concepts could be more distant? One deals with the ability of people with disabilities to obtain the long-term assistance they need to live in their homes and communities according to their own preferences and direction. The other addresses the desire of some people with terminal illnesses (and some with nonterminal conditions) to seek the assistance of their physicians in ending their lives. Yet, these disparate concepts have become intertwined in the ongoing debate over the right to die in the United States.
      This article considers each concept individually-personal assistance services and physician-assisted suicide-and how they relate to each other from the diverse ethical perspectives of people with disabilities.

      Personal assistance services

      Access to affordable personal assistance services under what has been referred to as the ″independent living model” is the premier policy goal of advocates of the independent living movement.
      • Batavia AI
      • DeJong G
      • McKnew LB
      Toward a national personal assistance program: the independent living model of long-term care for persons with disabilities.
      • DeJong G
      • Batavia AI
      • McKnew L
      The independent living model of personal assistance in national long-term-care policy.
      This social movement of, by, and for people with disabilities began in the early 1970s to remove environmental barriers to living independently in homes and communities.
      • DeJong G
      Independent living: from social movement to analytic paradigm.
      Without access to personal assistance services, many individuals with substantial functional limitations have no choice but to live in institutions or otherwise depend on the charity of others to satisfy their basic needs.
      • DeJong G
      • Wenker T
      Attendant care as a prototype independent living service.
      Access to personal assistance services is key to maintaining good health and a satisfactory quality of life (QOL) for many people with disabilities.
      • DeJong G
      • Batavia AI
      • Griss R
      America's neglected health minority: working-age persons with disabilities.
      • Nosek MA
      Personal assistance: its effect on the long-term health of a rehabilitation hospital population.
      • Beatty PW
      • Richmond GW
      • Tepper S
      • DeJong G
      Personal assistance for people with physical disabilities: consumer-direction and satisfaction with services.
      Under the independent living model, providers of services (ie, personal assistants) are recruited, selected, trained, managed, and directed and, if necessary, fired by consumers with disabilities.
      • Batavia AI
      • DeJong G
      • McKnew LB
      Toward a national personal assistance program: the independent living model of long-term care for persons with disabilities.
      • DeJong G
      • Batavia AI
      • McKnew L
      The independent living model of personal assistance in national long-term-care policy.
      Although differing degrees of consumer direction may be built into different personal assistance services programs, the unifying principle of all such programs organized under the independent living model is that the individuals receiving the services have primary authority to control their care and to make choices that work best for them.
      • Nosek MA
      Personal assistance services: a review of literature and analysis of policy implications.
      Such consumer-directed personal assistance services may be contrasted with uncompensated care provided by family members and friends under the ″informal support model,” and with the paid services of health care professionals and paraprofessionals under the ″medical model” of long-term care.
      • Batavia AI
      • DeJong G
      • McKnew LB
      Toward a national personal assistance program: the independent living model of long-term care for persons with disabilities.
      • DeJong G
      • Batavia AI
      • McKnew L
      The independent living model of personal assistance in national long-term-care policy.
      Unlike those providing services under the informal support model, personal assistance are paid by the consumers. Unlike providers under the medical model, personal assistants are not trained or supervised by health care professionals. Primarily for these reasons, consumers are in a position to direct and control their care, allowing them to pursue independent lifestyles.
      • Batavia AI
      • DeJong G
      • McKnew LB
      Toward a national personal assistance program: the independent living model of long-term care for persons with disabilities.
      • DeJong G
      • Batavia AI
      • McKnew L
      The independent living model of personal assistance in national long-term-care policy.

      Current status of personal assistance services

      Access to consumer-directed personal assistance services has increased dramatically over the past 30 years.
      • Doty P
      • Kasper J
      • Litvak S
      Consumer-directed models of personal care: lessons from Medicaid.
      At the outset of the independent living movement, such services were only available to people with significant personal resources. Gradually, states have established personal assistance programs under their Medicaid programs, initially through Medicaid's personal care optional benefit.
      • Doty P
      • Kasper J
      • Litvak S
      Consumer-directed models of personal care: lessons from Medicaid.
      A major impetus for the expansion of personal assistance services was the establishment in 1981 of the section 1915 home- and community-based care waiver program under Medicaid, which allowed states to deviate from strict federal regulations when they are able to justify the cost-effectiveness of home-based services.
      • Doty P
      • Kasper J
      • Litvak S
      Consumer-directed models of personal care: lessons from Medicaid.
      Independent living advocates have pressured states to incorporate consumer-directed services under the independent living model into their section 1915 waiver programs.
      • Egley L
      Program models providing personal assistance services (PAS) for independent living.
      Still, there remains a strong bias in favor of the medical model of long-term care in state Medicaid programs.
      • Doty P
      • Kasper J
      • Litvak S
      Consumer-directed models of personal care: lessons from Medicaid.
      • Egley L
      Program models providing personal assistance services (PAS) for independent living.
      Some programs are structured to allow significant consumer direction and control. However, many do not, and few entail the full amount of consumer direction and choice that would exist in a program in which the consumer controls the distribution of funds.
      • Kennedy J
      Policy and program issues in providing personal assistance service.
      Even programs that claim to be organized specifically under the independent living model often have numerous requirements reflecting the medical model, such as required supervision by nurses and limitations on what personal assistants can and cannot do.
      • Doty P
      • Kasper J
      • Litvak S
      Consumer-directed models of personal care: lessons from Medicaid.
      • Egley L
      Program models providing personal assistance services (PAS) for independent living.
      A few programs allow the consumer to receive cash payments, thereby allowing them maximum control over the use of funds. The oldest of these programs is the Aides and Attendant Allowance Program of the US Department of Veterans Affairs, which provides cash benefits to disabled veterans based on an assessment of their personal assistance requirements.
      • Batavia AI
      • DeJong G
      • McKnew LB
      Toward a national personal assistance program: the independent living model of long-term care for persons with disabilities.
      • DeJong G
      • Batavia AI
      • McKnew L
      The independent living model of personal assistance in national long-term-care policy.
      This program applies only to eligible disabled veterans and is an exception to the general rule that services are provided in-kind subject to considerable restrictions and regulations.
      • Batavia AI
      Health care, personal assistance, and assistive technology: are in-kind benefits key to independence or dependence for people with disabilities?.
      A few states have also been experimenting with cash payments for personal assistance services under the Cash and Counseling Demonstration, and are currently being evaluated.
      • Doty PJ
      The cash and counseling demonstration: an experiment an consumer-directed personal assistance services.
      Several countries have used a cash version of the independent living model for several years, and consumer-directed personal assistance services are readily available to consumers in those nations.
      • Cameron K
      • Firman J
      International and domestic programs using ″cash and counseling” strategies to pay for long-term care.

      Views of people with disabilities on personal assistance services

      The independent living model emerged largely as a repudiatin of the medical model by the young and working-age population of people with disabilities.
      • Batavia AI
      • DeJong G
      • McKnew LB
      Toward a national personal assistance program: the independent living model of long-term care for persons with disabilities.
      • DeJong G
      • Batavia AI
      • McKnew L
      The independent living model of personal assistance in national long-term-care policy.
      They did not want to be treated as patients who were supposed to follow the advice of their physicians irrespective of the consequences on QOL; instead, they wished to be treated as consumers who were fully capable of autonomy and independence.
      • Batavia AI
      • DeJong G
      • McKnew LB
      Toward a national personal assistance program: the independent living model of long-term care for persons with disabilities.
      • DeJong G
      • Batavia AI
      • McKnew L
      The independent living model of personal assistance in national long-term-care policy.
      For this reason, there is strong general support among the disability population for consumer-directed personal assistance services under the independent living model.
      • Dautel PJ
      • Frieden L
      Consumer choice and control: personal attendant services and supports in America. Report of the National Blue Ribbon Panel on Personal Assistance Services.
      • Simon-Rusinowitz L
      • Mahoney K
      • Desmond SM
      • et al.
      Determining consumer preferences for a cash option (AQ1): Arkansas survey results.
      • Desmond SM
      • Shoop DM
      • Simon-Rusinowitz L
      • Mahoney KJ
      • Squillace MR
      • Fay RA
      Comparing preferences for a cash option versus traditional services, Florida elders and adults with physical disabilities. Telephone survey technical report. Background research for the cash and counseling demonstration and evaluation.
      At a broader policy level, independent living advocates have strongly protested the lack of options available to people with disabilities for their long-term care and assistance. The vast majority of services covered by Medicaid, Medicare, and other government health care programs are provided under the medical model. Independent living and disability rights advocates are particularly outraged when people with disabilities have no other viable options than care in an institutional setting (eg, nursing home).
      Independent living advocates have spearheaded a multifaceted initiative, including protests, lobbying, and litigation, to allow all people with disabilities who are willing and able to live outside institutions and in their communities.
      • Shapiro JP
      No pity: people with disabilities forging a new civil rights movement.
      The Medicaid Community Attendant Services Act (HR 2020), commonly known as MiCASA, was introduced in the 105th Congress to expand coverage of personal assistance services by allowing the allocated Medicaid funds to follow the individual to whichever setting he/she prefers to receive personal assistance services. Subsequently, the Medicaid Community Attendant Services and Supports Act of 1999 (MiCASSA) was introduced.

      Medicaid Community Attendant Services and Supports Act of 1999, S 1935, 106th Cong (1999).

      Neither was enacted.
      The most significant recent developments supporting consumer-directed personal assistance services was the 1999 US Supreme Court decision in Olmstead v L.C.
      This decision found that unjustified institutionalization constitutes illegal discrimination under Title II of the Americans with Disabilities Act of 1990
      (ADA), and that states must move their institutionalized Medicaid recipients who are willing and able to live in the community.
      • Batavia AI
      A right to personal assistance services: ″most integrated setting appropriate” requirements and the independent living model of long-term care.
      Although the decision did not specify that these individuals must receive consumer-directed personal assistance services under the independent living model, that model is most consistent with the goals of the ADA.
      • Batavia AI
      A right to personal assistance services: ″most integrated setting appropriate” requirements and the independent living model of long-term care.

      Physician-assisted suicide

      Physician-assisted suicide is the act of taking one's life with the support and technical assistance of a physician.
      • Quill TE
      Death and dignity: a case of individualized decision making.
      Typically, the physician prescribes a lethal dose of pharmaceuticals and the patient independently takes the pills to induce death. Self-administration by the individual ending his/her life is considered a defining characteristic of assisted suicide. If the physician or another person were to administer the lethal agents, the act would be characterized as euthanasia, which is considered murder in every jurisdiction in the United States.

      Current status of physician-assisted suicide

      In 1997, the US Supreme Court decided in Vacco v. Quill
      and Washington v. Glucksberg
      that there is no federal constitutional right to assisted suicide in the United States. This holding means that states are not required by the US Constitution to allow terminally ill individuals to hasten their deaths with the assistance of their physicians. However, these decisions also did not prohibit states from allowing physician-assisted suicide, and states may determine whether and under what conditions to allow the practice.
      Currently, 1 state has legalized physician-assisted suicide. Oregon's Death with Dignity Act
      was passed in a state referendum in 1994, challenged legally, and passed again in another referendum in 1997 with a 60% majority vote. Despite several efforts to nullify or undermine the law, it has been fully implemented for 4 years and there has not been a single adverse incident (eg, report of coercion or other abuse of the law).
      • Chin AE
      • Hedberg K
      • Higginson GK
      • Fleming DW
      Legalized physician-assisted suicide in Oregon-the first year's experience.
      Oregon Health Division. Oregon's Death with Dignity Act: three years of legalized physician-assisted suicide.
      Other states, including Arizona, California, Connecticut, Hawaii, Louisiana, Maine, Massachusetts, Minnesota, and New Hampshire, have seriously considered legislation or referendums permitting physician-assisted suicide.
      Most recently, US Attorney General Ashcroft has reinterpreted the Controlled Substances Act
      such that any physician who prescribes a lethal agent for the purpose of assisted suicide will be subject to loss of license to prescribe drugs and possible criminal prosecution.
      • Verhovek SH
      Federal agents are directed to stop physicians who assist suicides.
      This administrative interpretation, intended to prohibit assisted suicide by circumventing the Oregon law, has been severely criticized and is being challenged both legally and politically.
      • Rollin B
      My mother died peacefully because she decided when.
      Therefore, the issue of assisted suicide in this country has not been resolved definitively at this time.

      Views of people with disabilities on physician-assisted suicide

      Unlike their views on personal assistance services, people with disabilities are highly divided on physician-assisted suicide.
      • Batavia AI
      Disability and physician-assisted suicide.
      A very vocal group of people with disabilities, including several prominent disability rights leaders, have taken strong public positions against recognition of a right to physician-assisted suicide.
      However, there is a diversity of opinions by members of the disability community on this issue, and some evidence suggests that a majority of people with disabilities support a right to assisted suicide for terminally ill individuals.
      • Batavia AI
      Disability and physician-assisted suicide.
      An in-depth study
      • Fadem P
      • Minkler M
      • Perry M
      • et al.
      Attitudes of people with disabilities toward death with dignity legislation: broadening the dialogue.
      of 45 individuals with disabilities in Berkeley, CA, a stronghold of organizations that oppose a right to assisted suicide, suggests that the community of people with disabilities is deeply divided over whether terminally ill individuals should have a right to assisted suicide. Specifically, 27% of the disabled people interviewed supported assisted suicide legislation, 24% opposed such legislation, and 49% were ambivalent on this issue.
      • Fadem P
      • Minkler M
      • Perry M
      • et al.
      Attitudes of people with disabilities toward death with dignity legislation: broadening the dialogue.
      Virtually all respondents advocated self-determination and autonomy in how people with disabilities live and die.
      • Fadem P
      • Minkler M
      • Perry M
      • et al.
      Attitudes of people with disabilities toward death with dignity legislation: broadening the dialogue.
      A member of the study's community advisory committee of 6 people with disabilities summarized the study results as follows:
      There seems to be one public position on behalf of people with disabilities about death with dignity legislation put forward by disability community spokespersons and groups, but when you go deeper into the community there are many different opinions. An individual's opinion seems to depend on their own character, personal experience (of self or a loved one) with near-death or death, among many other things.
      • Fadem P
      • Minkler M
      • Perry M
      • et al.
      Attitudes of people with disabilities toward death with dignity legislation: broadening the dialogue.
      A primary argument of disability rights advocates who oppose the right is that our society has devalued people with disabilities, giving many no option but to live in nursing homes and other institutions.
      • Gill CJ
      Health professionals, disability and assisted suicide: an examination of relevant empirical evidence and response to Batavia (2000).
      They contend that, in a society that continues to discriminate against people with disabilities, and a managed health care system designed to cut costs irrespective of the consequences, people with terminal illnesses and other disabilities will be coerced into ending their lives.
      They further contend that the right to assisted suicide itself is premised on traditional antidisability prejudices and misconceptions, such as that people with disabilities necessarily have a diminished QOL.
      • Gill CJ
      Health professionals, disability and assisted suicide: an examination of relevant empirical evidence and response to Batavia (2000).
      They conclude that basing the right to assisted suicide or the availability of related services (ie, suicide prevention services) on such biases and misconceptions is illegal, violating the ADA
      and denying people with disabilities equal protection of the laws under the Fourteenth Amendment of the US Constitution.
      These opponents contend that the right to physician-assisted suicide cannot be limited to competent individuals in the terminal stage of an illness, and that it will inevitably be expanded to competent individuals with nonterminal disabilities and to incompetent individuals; that it cannot be limited to voluntary decisions to self-administer lethal drugs and that it will be expanded to euthanizing people with disabilities against their wills.
      • Gill CJ
      Health professionals, disability and assisted suicide: an examination of relevant empirical evidence and response to Batavia (2000).
      They use the Netherlands and Nazi Germany as examples to demonstrate that people with disabilities generally would be harmed by recognition of the right.
      They have a strong distrust of physicians, whom they believe have prejudices against people with disabilities, and are therefore particularly opposed to having of physicians serve as gatekeepers to assisted suicide.
      • Gill CJ
      Health professionals, disability and assisted suicide: an examination of relevant empirical evidence and response to Batavia (2000).
      Finally, the essence of their argument is that disabled people are an oppressed minority and will be coerced into ending their lives against their wills.
      One of the foremost opponents, Paul Longmore stated:
      I think that we live in a society that is deeply prejudiced against us, and that we are an oppressed minority. . . . It is one thing to make fundamental choices; its another thing to have the society that's oppressing us set up mechanisms to facilitate our suicides. Any society that would guarantee assistance in committing suicide by an oppressed person is simply indicating just how oppressive and hypocritical it is.
      • Corbet B
      Assisted suicide: death do us part.
      People with disabilities who support the right focus primarily on the autonomy and self-determination of the individual with a disability, which they contend is the fundamental basis of the disability rights and independent living movement in the United States.
      • Pflueger SS
      Independent living.
      • National Council on Disability
      Toward independence.
      • Nagler M
      Perspective on disability.
      • West J
      The Americans with Disabilities Act: from policy to practice.
      They argue that people with disabilities should be allowed to make all decisions that affect their lives, including the decision to end their lives with or without assistance.
      • Batavia AI
      The relevance of physician data on the right to physician-assisted suicide: can studies resolve the issue?.
      Supporters of the right believe that competent individuals with disabilities, even in oppressive circumstances such as many institutions, can exercise some degree of autonomy. They do not believe that the right to assisted suicide is premised on a diminished QOL for people with disabilities; rather, they believe the right is based on respect for the autonomy of terminally ill individuals during their final days.
      • Batavia AI
      Disability and physician-assisted suicide.
      Moreover, the right would not deprive people with disabilities of anything, including suicide prevention services, and therefore would not violate the ADA or the Equal Protection Clause of the Constitution.
      • Batavia AI
      Disability and physician-assisted suicide.
      They further contend that, though our society must always be vigilant in preventing abuses, the right will not necessarily be expanded to individuals or situations for which it was not intended. The extensive experience in the Netherlands, where assisted suicide and voluntary active euthanasia have not been prosecuted if certain safeguards are respected, indicates that the slippery slope that the opponents predict has not occurred there.
      • van der Mass PJ
      • van der Wal G
      • Haverkate I
      • et al.
      Euthanasia, physician-assisted suicide and other medical practices involving the end of life in the Netherlands, 1990-1995.
      • van der Wal G
      • van der Maas PJ
      • Bosma JM
      • et al.
      Evaluation of the notification procedure for physician-assisted death in the Netherlands.
      • Angel M
      Euthanasia in the Netherlands-good news or bad? [editorial].
      Analogies to Nazi Germany are particularly misplaced.
      • Gallagher H
      What the Nazi ″Euthanasia Program” can tell us about disability oppression.
      Nazi Germany conducted an involuntary euthanasia program in which the state granted authority to physicians to kill people with disabilities against their wills
      • Gallagher HG
      By trust betrayed: patients, physicians and the license to kill in the Third Reich.
      ; in our country, we are debating whether dying individuals may choose to end their own lives with the assistance of their physicians.
      • Batavia AI
      Disability and physician-assisted suicide.
      • Gallagher H
      What the Nazi ″Euthanasia Program” can tell us about disability oppression.
      Despite the superficial resemblance-both policies concerning death with physician intervention-they are really diametric opposites; in Germany, the state exercised all the power, and in the United States, the individual exercises the power.
      • Batavia AI
      Disability and physician-assisted suicide.
      • Gallagher H
      What the Nazi ″Euthanasia Program” can tell us about disability oppression.
      • Gallagher HG
      By trust betrayed: patients, physicians and the license to kill in the Third Reich.
      Those opposing a right to assisted suicide predict that many people with disabilities would be killed against their wills if assisted suicide were legalized.
      There is no evidence that this has happened in the analogous situation of people on life-support systems, who have had the right to die at least since the Cruzan
      decision in 1990. Abuses of assisted suicide, to the extent they now occur behind closed doors, are less likely to continue if assisted suicide is legalized and appropriately regulated.
      • Shavelson L
      A chosen death: the dying confront assisted suicide.
      With respect to the oppression argument, disabled people who support the right do not necessarily disagree that disabled people have been subject to oppression, but may believe 1 or more of the following: (1) people with disabilities, as a group, are no longer oppressed at this time in our history; (2) even if people with disabilities are an oppressed minority, an individual is not necessarily oppressed simply because he/she has a disability; and (3) even if the individual is considered oppressed, this does not necessarily mean he/she is so devoid of autonomy that he/she should not be allowed to control decisions that affect his/her life and death.
      • Batavia AI
      The new paternalism: characterizing people with disabilities as an oppressed minority.

      The personal assistance services-physician-assisted suicide link

      Two arguments relating to the concept of personal assistance services have been raised in the debate on legalization of assisted suicide, 1 argument against and 1 argument for the
      It is important to note that these disability arguments concerning personal assistance services are not the only disability arguments for and against a right to physician-assisted suicide. For example, there is disagreement among members of the disabled population over whether the right is based on a presumption of diminished QOL for people with disabilities and whether regulatory safeguards against abuse would be effective to protect those disabled people who are vulnerable.

      The personal assistance argument against assisted suicide

      One primary argument against a right to assisted suicide that is frequently raised by the opponents with disabilities is that, until society provides disabled people with all the resources they need to live independent, dignified lives, we should not even be thinking about providing assistance in ending life. Although this argument generally is not presented in formal philosophic terms, 1 way to interpret it is that people with disabilities cannot provide informed consent to assisted suicide unless and until they have, and are aware of, reasonable options available to live independently. A more radical interpretation, which is stated explicitly and frequently by certain groups, is that people with disabilities, both individually and as a group, are so oppressed by the lack of options offered by society that any decision to end their lives must be presumed to be coercive.
      • Corbet B
      Assisted suicide: death do us part.
      The principal example often presented to support this set of arguments relates to access to personal assistance services.
      • Corbet B
      Assisted suicide: death do us part.
      Opponents of the right virtually always discuss situations in which people who were institutionalized or otherwise did not have adequate access to personal assistance services chose to end their lives with assistance.
      • Corbet B
      Assisted suicide: death do us part.
      Several key cases are frequently presented as evidence against legalization of assisted suicide; these are the cases of Larry McAfee, Elizabeth Bouvia, and David Rivlin.
      • Shapiro JP
      No pity: people with disabilities forging a new civil rights movement.
      • Corbet B
      Assisted suicide: death do us part.
      McAfee was a quadriplegic who required a respirator as a result of a motorcycle injury. After being transferred from nursing home to nursing home, he finally decided that he had ″nothing to look forward to” and he requested permission from a court to have his respirator turned off.
      • Shapiro JP
      No pity: people with disabilities forging a new civil rights movement.
      Eventually, the judge granted his request, but McAfee never exercised his right to die. Ultimately, he secured the public resources to live in his community with the aid of personal assistants.
      • Shapiro JP
      No pity: people with disabilities forging a new civil rights movement.
      Those who oppose a right to physician-assisted suicide cite the McAfee case as evidence of how our society oppresses people with disabilities, and as proof that assisted suicide and other manifestations of the right to die should not be permitted in the United States.
      • Shapiro JP
      No pity: people with disabilities forging a new civil rights movement.
      First, they claim that McAfee was so oppressed by a system that would not allow him to live in a noninstitutional setting that any decision to end his life could not be considered truly voluntary.
      • Corbet B
      Assisted suicide: death do us part.
      Second, they claim that decisions by the court and medical professionals supporting McAfee's decision to end his life demonstrate strong prejudices against people with disabilities, particularly a belief that they necessarily have a diminished QOL.
      • Corbet B
      Assisted suicide: death do us part.
      These opponents further contend that, although McAfee's request would have been answered with suicide prevention efforts if made by a nondisabled person, McAfee was given support to end his life.
      • Shapiro JP
      No pity: people with disabilities forging a new civil rights movement.
      • Corbet B
      Assisted suicide: death do us part.
      Those with disabilities who support a right to physician-assisted suicide agree that our society does not adequately meet the needs of people with disabilities, and that much more needs to be done in this regard.
      • Batavia AI
      Disability and physician-assisted suicide.
      They would agree that anyone who was subject to the nightmare that McAfee endured would probably want to end his life. Specifically, they agree that access to personal assistance services must be improved dramatically, and the State of Georgia should have offered this option to McAfee at an early stage.
      • Batavia AI
      Disability and physician-assisted suicide.
      However, they reject the notion that, until life circumstances for people with disabilities are much better, there should be no right to assisted suicide; suicide may be their only means of escaping what some of these individuals regard as an ongoing nightmare.
      • Batavia AI
      Disability and physician-assisted suicide.
      From the perspective of right-to-die advocates, the McAfee case was a success story, in that only after McAfee was granted the right to die did his situation receive the attention, resources and administrative flexibility he needed to live in his community. In a very real sense, one could argue that his decision to live resulted from having the option to die.
      The cases of Bouvia and Rivlin, on the other hand, are not success stories. They also involved a failure of the system to meet the personal assistance and independent living needs of people with disabilities. Each sought and was granted the right to have their life-sustaining interventions withdrawn. Bouvia, who was granted the right to have her feeding tube removed, never exercised the right and it has been reported that she continued to live in a small room at a state hospital for a charge of $800 per day.
      • Shapiro JP
      No pity: people with disabilities forging a new civil rights movement.
      She might have been much better off if the state had simply given her half that money to hire personal assistants in the community. Rivlin did exercise the right to end his life, having his ventilator removed. Although both cases are true tragedies, neither can be attributed to the right to die. Rivlin presumably would have found some way to end his life without the right or would have lived the remainder of his life in institutions.
      The general ″oppressed minority” version of the personal assistance argument against assisted suicide is offensive to people with disabilities who support the right.
      • Batavia AI
      Disability and physician-assisted suicide.
      The contention that all people with disabilities are so oppressed, simply by virtue of their disability status, as to be presumed incapable of making end-of-life decisions reflects the same paternalism that the independent living movement was established to abolish.
      • Batavia AI
      The new paternalism: characterizing people with disabilities as an oppressed minority.
      Whether the disabled population is an oppressed minority is a political and philosophic question on which people with disabilities are divided.
      • Batavia AI
      Are people with disabilities an oppressed minority, and why does this matter?.

      The personal assistance argument for assisted suicide

      Those who support a right to physician-assisted suicide argue that some people, particularly those with substantial disabilities, are not able to take their own lives without the substantial risk of failing in their efforts and substantially worsening their conditions.
      • Batavia AI
      Disability and physician-assisted suicide.
      For example, a failed attempt could result in severe brain injury or coma. Supporters of the right contend that, rather than forcing these individuals into desperate acts of suicide, typically with inadequate knowledge of how to achieve death successfully, competent assistance should be available to them. The availability of such assistance could provide the opportunity to reconsider a decision to end one's life, or at least to postpone acting on the decision.
      • Batavia AI
      The relevance of physician data on the right to physician-assisted suicide: can studies resolve the issue?.
      Those with disabilities who oppose the right contend that virtually anyone can end his/her life without assistance.
      • Gill CJ
      Health professionals, disability and assisted suicide: an examination of relevant empirical evidence and response to Batavia (2000).
      Referring to the McAfee case, it has been reported that one of the leading opponents has actually contended that ″McAfee could run his electric wheelchair into a lake and drown or crash it down a flight of stairs.”
      • Shapiro JP
      No pity: people with disabilities forging a new civil rights movement.
      It is not clear whether this was a serious suggestion, in that the most likely consequence of crashing a wheelchair is to sustain multiple bone fractures and possibly a severe head injury. Driving into a body of water may result in near drowning and brain damage from oxygen deprivation.
      There are, of course, more dependable strategies to end one's life, such as shooting, hanging, or drugging oneself. None of these are guaranteed to achieve the desired goal. Moreover, all of these require some level of functional capacity. Some people with major disabilities (eg, quadriplegia, muscle disease, dysphagia) simply do not have the functional capacity to implement these strategies without assistance.
      Finally, 1 suicide strategy appears to be applicable to virtually anyone: voluntary refusal of food and fluids, often referred to as ″terminal dehydration.”
      • Bernat JL
      • Gert B
      • Mogielnicki RP
      Patient refusal of hydration and nutrition: an alternative to physician-assisted suicide or voluntary active euthanasia.
      Refusing nutrition and hydration for an extended period of time will cause death in a dependable manner without undue risks.
      • Quill TE
      • Byock IR
      Responding to intractable terminal suffering: the role of terminal sedation and voluntary refusal of food and fluids. ACP-ASIM End-of-Life Care Consensus Panel. American College of Physicians-American Society of Internal Medicine.
      This approach has the ethical advantage of being initiated and directed entirely by the individual, and therefore is less subject to criticisms concerning external coercion by others. However, in practice, this approach usually cannot be implemented independently; palliative care to address discomfort (eg, dry mouth and throat) is typically required.
      • Bernat JL
      • Gert B
      • Mogielnicki RP
      Patient refusal of hydration and nutrition: an alternative to physician-assisted suicide or voluntary active euthanasia.
      • Quill TE
      • Byock IR
      Responding to intractable terminal suffering: the role of terminal sedation and voluntary refusal of food and fluids. ACP-ASIM End-of-Life Care Consensus Panel. American College of Physicians-American Society of Internal Medicine.
      Some sedation is often necessary, and terminal sedation may be indicated if the individual becomes severely agitated.
      • Bernat JL
      • Gert B
      • Mogielnicki RP
      Patient refusal of hydration and nutrition: an alternative to physician-assisted suicide or voluntary active euthanasia.
      • Quill TE
      • Byock IR
      Responding to intractable terminal suffering: the role of terminal sedation and voluntary refusal of food and fluids. ACP-ASIM End-of-Life Care Consensus Panel. American College of Physicians-American Society of Internal Medicine.
      Moreover, a significant problem with this starvation and dehydration strategy is its timeframe. The period of time necessary to achieve death varies from individual to individual, and may range from about a week to several weeks, depending in part on the individual's physical condition.
      • Quill TE
      • Lo B
      • Brock DW
      Palliative options of last resort: a comparison of voluntarily stopping eating and drinking, terminal sedation, physician-assisted suicide, and voluntary active euthanasia.
      The effect on family members, friends, assistants and others who must observe the slow dying process can be profound.
      • Miller FG
      • Meier DE
      Voluntary death: a comparison of terminal dehydration and physician-assisted suicide.
      Because this strategy cannot be implemented comfortably without assistance, the availability of hospice workers to provide comfort care and to spare the family emotional trauma is important.
      • Quill TE
      • Byock IR
      Responding to intractable terminal suffering: the role of terminal sedation and voluntary refusal of food and fluids. ACP-ASIM End-of-Life Care Consensus Panel. American College of Physicians-American Society of Internal Medicine.
      Although starvation and dehydration is available to virtually anyone, it is not necessarily acceptable to everyone. Those opposed to a right to assisted suicide who argue that, assistance by others is unnecessary because anyone can starve himself, must respond to those who contend that they do not wish to die in that manner. The typical response is that an easy death is not a legitimate goal of public policy, and that the risks associated with authorizing assistance outweighs the individual's desires.
      • Gill CJ
      Health professionals, disability and assisted suicide: an examination of relevant empirical evidence and response to Batavia (2000).
      Opponents claim that many people who attempt suicide really do not wish to succeed, which explains the high failure rate of suicide.
      • Desmond SM
      • Shoop DM
      • Simon-Rusinowitz L
      • Mahoney KJ
      • Squillace MR
      • Fay RA
      Comparing preferences for a cash option versus traditional services, Florida elders and adults with physical disabilities. Telephone survey technical report. Background research for the cash and counseling demonstration and evaluation.
      Those who support the right to assisted suicide argue that it is not humane to force individuals into desperate acts of suicide alone, and that with assistance, people are more likely to think through whether they really want to die.
      • Batavia AI
      The relevance of physician data on the right to physician-assisted suicide: can studies resolve the issue?.
      It also offers additional opportunities for someone to intervene and convince the individual not to take his/her life. Finally, it allows individuals to postpone their suicides with the knowledge that they can always obtain assistance at a later time if they are not able to implement a suicide strategy at that time.
      • Batavia AI
      The relevance of physician data on the right to physician-assisted suicide: can studies resolve the issue?.

      Personal assistance services-physician-assisted suicide issues

      This philosophic debate over assisted suicide raises some practical real-world issues. If some people simply cannot end their own lives in a certain and reasonable manner, several questions are raised. First, should we honor the requests for assistance by those who do not have the functional capacity to end their lives independently? Second, if we honor the request, who should provide the assistance? Third, if someone is permitted to provide assistance, what type of assistance should be allowed?

      Should we honor requests?

      Those who differ on whether there should be a right to assisted suicide for terminally ill individuals will differ on whether we should honor the requests of people with disabilities who do not have terminal conditions and who cannot end their lives without assistance.
      • Batavia AI
      Disability and physician-assisted suicide.
      • Batavia AI
      The relevance of physician data on the right to physician-assisted suicide: can studies resolve the issue?.
      Even those who support the right are divided over whether it should be available to people with nonterminal conditions.
      • Batavia AI
      The relevance of physician data on the right to physician-assisted suicide: can studies resolve the issue?.
      Some who would not extend the right believe it should only be available to people with terminal illnesses (ie, life expectancies of <6mo). Some are concerned that the risk of abuse associated with extending the right is not justified by the benefit to a relatively small number of people. Some simply take the pragmatic view that it is easier to enact assisted suicide legislation for people with terminal illnesses than for people with other nonterminal conditions.
      • Batavia AI
      The relevance of physician data on the right to physician-assisted suicide: can studies resolve the issue?.
      Others believe that the right should be extended to people with nonterminal conditions.
      • Batavia AI
      The relevance of physician data on the right to physician-assisted suicide: can studies resolve the issue?.
      Some do so for reasons inconsistent with the views of disability rights advocates. These include some members of the Hemlock Society, who have based their position on precisely the types of misconceptions about people with disabilities and their QOL that the opponents criticize.
      • Batavia AI
      Disability and physician-assisted suicide.
      Others are much more ambivalent about extending the right to those with nonterminal conditions, and conclude in support of the right on the basis of compassion for people who cannot adjust to their disabilities after a significant period of time.
      • Batavia AI
      The relevance of physician data on the right to physician-assisted suicide: can studies resolve the issue?.
      The Netherlands allows people with nonterminal conditions to receive assistance without prosecution, and there is relatively little controversy over this issue in that country.

      Who should be allowed to assist?

      Some people with disabilities who oppose the right contend that physicians and other health care professionals cannot be trusted to serve in this capacity, claiming that they have substantial biases, misconceptions, and negative attitudes toward people with disabilities.
      • Gill CJ
      Health professionals, disability and assisted suicide: an examination of relevant empirical evidence and response to Batavia (2000).
      • Corbet B
      Assisted suicide: death do us part.
      Some even claim that their physicians would be eager to end their lives, if given the opportunity.
      • Corbet B
      Assisted suicide: death do us part.
      Those who support the right tend to be more reluctant to believe that physicians and health care professionals cannot be trusted to assist us with life and death issues, and are particularly reluctant to accept the contention that these health care professionals are eager to end our lives.
      • Batavia AI
      Disability and physician-assisted suicide.
      • Batavia AI
      The relevance of physician data on the right to physician-assisted suicide: can studies resolve the issue?.
      They believe that, just as health care professionals at hospices are trained to deal with death and dying, other health professionals who address disability issues can be trained to address death and dying.
      • Batavia AI
      Disability and physician-assisted suicide.
      • Batavia AI
      The relevance of physician data on the right to physician-assisted suicide: can studies resolve the issue?.
      If it is determined that health care professionals are not qualified to address these issues, this does not mean that nobody is qualified to assist. Assistance by physicians or other trained health care professionals is preferable because they are more likely to have the technical knowledge to provide proper assistance in achieving a certain death. Yet, with the right information, any competent and willing adult could provide such assistance, if the law permits. The basic philosophy of independent living movement is that people with disabilities should be able to receive any personal assistance they request that their personal assistants are willing and able to provide legally. Although applying this philosophy in the current context may seem morbid, many supporters of the right would contend that the general principle should still apply.

      What type of assistance should be allowed?

      Potential options available to assist those who wish to end their lives range from self-administration of a lethal agent to administration of the lethal agent by the assistant. The options actually available may be limited by the individual's functional limitations. As indicated, a conceptual distinction has been drawn between self-administration (ie, assisted suicide) and administration by others (ie, euthanasia). Opponents tend to support this distinction, though they oppose a right to assisted suicide and euthanasia. Those who support the right tend to be divided over whether this distinction is justified. Some think it offers an additional safeguard that the act is voluntary. Others believe that voluntariness is the key issue, and the distinction between self-administration and other administration is without real meaning. They believe that assistance should be permitted in the manner that the individual needs assistance, and people who are not capable of self-administration should not be deprived of assistance simply by virtue of their disabilities.

      Conclusions

      Access to affordable consumer-directed personal assistance services is extremely important to people with disabilities. Personal assistance services allow people with even the most substantial functional limitations to live independently in their communities. There is little doubt that people who have access to consumer-directed personal assistance services under the independent living model tend to have more satisfying lives than those who do not, and that they are less likely to be depressed or want to end their lives. Establishment of a national program or policy to expand access to personal assistance services should be a national priority.
      • Batavia AI
      • DeJong G
      • McKnew LB
      Toward a national personal assistance program: the independent living model of long-term care for persons with disabilities.
      • DeJong G
      • Batavia AI
      • McKnew L
      The independent living model of personal assistance in national long-term-care policy.
      There is far less consensus in the disability community on whether poor access to personal assistance services can serve as a justification for denying the right to end life with assistance or whether one's substantial functional limitations can serve as a justification for having such a right. This debate among independent living and disability rights advocates has become increasingly acrimonious in recent years, often shedding more heat than light on this controversial topic.
      • Batavia AI
      A call for civility in the disability/assisted suicide debate. [letter].
      One thing most of these advocates can agree on is that, if personal assistance services become generally available to people with disabilities, there would be 1 less issue of contention in the debate over assisted suicide-such services are so important to people with disabilities that a major QOL issue will have been resolved.

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