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Assisted Suicide: A Disability Perspective
Position Paper
National Council on Disability
March 24, 1997
Marca Bristo, Chairperson
Written for the National Council on Disability by
Professor Robert L. Burgdorf Jr., University of the District of
Columbia School of Law
TABLE OF CONTENTS
Executive Summary
I. INTRODUCTION
II. COMPLEXITY OF THE ISSUES
III. THE CASES UNDER CONSIDERATION BY
THE SUPREME COURT
IV. PERSPECTIVES OF INDIVIDUALS WITH
DISABILITIES
A. A Split of Opinion?
B. Insights from the Disability Experience
- The Paramount Issue -- Rights, Services,
and Options
- The Reality and Prevalence of Discrimination
- Deprivation of Choices and the Importance
of Self-Determination
- Others' Underestimation of Life
Quality
- Fallibility of Medical Predictions
- Eschewing the Medical Model of Disabilities
- The Impact of Onset of Disability
Upon Emotional State and Decision-Making
- The Reality of Living with Pain
and Bodily Malfunction
- Divergent Interests of Those Involved
in Assisted Suicide Decisions
V. CONCLUSIONS
The Current Situation
Procedural Protections
Weighing the Dangers of Physician-Assisted
Suicide Against its Benefits
Executive
Summary Physician-assisted suicide and
related issues have garnered much judicial, media, and scholarly
attention in recent months. Two cases presently pending before the
United States Supreme Court raise the issue of the legality of state
laws prohibiting physician-assisted suicide. As the principal agency
within the federal government charged with the responsibility of
providing cross-disability policy analysis and recommendations regarding
government programs and policies that affect people with disabilities,
the National Council on Disability is issuing this position paper
in the hope of presenting a coherent and principled stance on these
issues drawn from the input and viewpoints of individuals with disabilities.
In the body of this position paper, the Council examines
a number of insights derived from the experiences of people with
disabilities focusing on the following topics:
- The Paramount Issue -- Rights, Services, and Options
- The Reality and Prevalence of Discrimination
- Deprivation of Choices and the Importance of Self-Determination
- Others' Underestimation of Life Quality
- Fallibility of Medical Predictions
- Eschewing the Medical Model of Disabilities
- The Impact of Onset of Disability Upon Emotional
State and Decision-Making
- The Reality of Living with Pain and Bodily Malfunction
- Divergent Interests of Those Involved in Assisted
Suicide Decisions
Based upon these insights from those who have experienced
disabilities and upon the existing legal framework, the National
Council on Disability has formulated its position on the issue of
physician-assisted suicide for persons with imminently terminal
conditions as follows:
The benefits of permitting physician-assisted suicide
are substantial and should not be discounted; they include respect
for individual autonomy, liberty, and the right to make one's own
choices about matters concerning one's intimate personal welfare;
affording the dignity of control and choice for a patient who otherwise
has little control of her or his situation; allowing the patient
to select the time and circumstances of death rather than being
totally at the mercy of the terminal medical condition; safeguarding
the doctor/patient relationship in making this final medical decision;
giving the patient the option of dying in an alert condition rather
than in a medicated haze during the last hours of life; and, most
importantly, giving the patient the ability to avoid severe pain
and suffering.
The Council finds, however, that at the present time
such considerations are outweighed by other weighty countervailing
realities. The benefits of physician-assisted suicide only apply
to the small number of people who actually have an imminently terminal
condition, are in severe, untreatable pain, wish to commit suicide,
and are unable to do so without a doctor's involvement.
The dangers of permitting physician-assisted suicide
are immense. The pressures upon people with disabilities to choose
to end their lives, and the insidious appropriation by others of
the right to make that choice for them are already prevalent and
will continue to increase as managed health care and limitations
upon health care resources precipitate increased "rationing" of
health care services and health care financing.
People with disabilities are among society's most
likely candidates for ending their lives, as society has frequently
made it clear that it believes they would be better off dead, or
better that they had not been born. The experience in the Netherlands
demonstrates that legalizing assisted suicide generates strong pressures
upon individuals and families to utilize that option, and leads
very quickly to coercion and involuntary euthanasia. If assisted
suicide were to become legal, the lives of people with any disability
deemed too difficult to live with would be at risk, and persons
with disabilities who are poor or members of racial minorities would
likely be in the most jeopardy of all.
If assisted suicide were to be legalized, the only
way to ward off the most dire ramifications for people with disabilities
would be to create stringent procedural prerequisites. But, to be
effective, such procedural safeguards would necessarily sacrifice
individual autonomy to the supervision of medical and legal overlords
to an unacceptable degree -- the cure being as bad as the disease.
For many people with disabilities, it is more often
the discrimination, prejudice, and barriers that they encounter,
and the restrictions and lack of options that this society has imposed,
rather than their disabilities or their physical pain, that cause
people with disabilities' lives to be unsatisfactory and painful.
The notion that a decision to choose assisted suicide must be preceded
by a full explanation of the programs, resources, and options available
to assist the patient if he or she does not decide to pursue suicide
strikes many people with disabilities as a very shallow promise
when they know that all too often the programs are too few, the
resources are too limited, and the options are nonexistent. Society
should not be ready to give up on the lives of its citizens with
disabilities until it has made real and persistent efforts to give
these citizens a fair and equal chance to achieve a meaningful life.
For these reasons, the Council has decided that at
this time in the history of American society it opposes the legalization
of assisted suicide. Current evidence indicates clearly that the
interests of the few people who would benefit from legalizing physician-assisted
suicide are heavily outweighed by the probability that any law,
procedures, and standards that can be imposed to regulate physician-assisted
suicide will be misapplied to unnecessarily end the lives of people
with disabilities and entail an intolerable degree of intervention
by legal and medical officials in such decisions. On balance, the
current illegality of physician-assisted suicide is preferable to
the limited benefits to be gained by its legalization. At least
until such time as our society provides a comprehensive, fully-funded,
and operational system of assistive living services for people with
disabilities, this is the only position that the National Council
on Disability can, in good conscience, support.
I.
INTRODUCTION Physician-assisted suicide and
related issues have garnered much judicial, media, and scholarly
attention in recent months. Well-publicized instances of legal prosecutions
of medical practitioners, such as Dr. Jack Kevorkian, for engaging
in acts of assisted suicide, and recent consideration by the United
States Supreme Court of a pair of cases in which the legality of
state laws prohibiting physicians from assisting suicides by their
patients has been contested have generated considerable debate,
controversy, and pontificating by various individuals and organizations.
As the principal agency within the federal government
charged with the responsibility of providing cross-disability policy
analysis and recommendations regarding government programs and policies
that affect people with disabilities, the National Council on Disability
is issuing this position paper in the hope of presenting a coherent
and principled stance on these issues drawn from the input and sometimes
conflicting viewpoints of individuals with disabilities. This position
paper was drafted for the National Council on Disability by Professor
Robert L. Burgdorf Jr. of the University of the District of Columbia
School of Law.
II.
COMPLEXITY OF THE ISSUES Discussions of the
issues surrounding the question of physician-assisted suicide should
not oversimplify the subject. While various individuals and organizations
have sometimes formulated their positions in ways that make the
issues seem simple and straightforward, consideration of the legal,
medical, and societal implications of assisted suicide are inherently
thorny and multifaceted. If one limits consideration only to matters
of legality, the question whether or not physician-assisted suicide
should be legal involves a number of component questions: Is there
or should there be a legal right to commit suicide? Should it ever
be legal for some other person to assist in a suicide? Should a
physician ever be permitted to assist in a suicide? Should any right
to commit suicide or to assist in someone else's suicide be limited
to situations where a person is terminally ill? If so, how imminent
must the person's death be? Should any right to commit suicide or
to assist in someone else's suicide be limited to situations where
a person is in severe pain? If so, how much pain suffices? Sporadic
or constant pain? What if the pain is partially or fully treatable?
Is it assisting suicide to treat pain with medication or other techniques
that will shorten life? Should a person's age and life expectancy
ever be considered? Is there a difference in the criteria that should
be applied to determinations whether or not to provide ordinary
medical treatment; to provide, refuse to provide, or to terminate
"extraordinary measures;" or to assist the termination or shortening
of life? Should there be a difference in the requirements and standards
applied to decisions to administer medical procedures that will
save a person's life versus those that will merely extend it somewhat?
Who should make such determinations -- the patient, the doctor,
the family, medical review boards, the courts? Do the same or different
considerations apply regarding individuals who are not capable of
making the decisions about their treatment themselves? What types
of procedural safeguards should be imposed to ensure the integrity
of the decision-making process? Can such procedural prerequisites
be workable and effective in application?
Even the more straightforward situation where an
individual is able to take her or his own life without direct assistance
involves its own legal complications. If a physician prescribes
medication that is used in the suicide, the doctor may risk legal
liability to the extent that it appears that the doctor intentionally
prescribed the medication for that purpose. And the individual who
decides to take his or her life may endanger family members or others
who are present when the deed is done, because they may risk liability
for aiding or abetting the suicide, a circumstance that at the very
least adds stress, guilt, or isolation and loneliness for all of
those involved in the scenario.
This position paper does not aim to unravel all such
complexities and answer all of the foregoing questions. It seeks,
rather, to delineate some criteria and principles derived from the
experiences and deliberations of people with disabilities that will
hopefully enlighten future initiatives undertaken by the federal
government and the states to refine the law in this area. There
can be little question that current laws and legal principles regarding
treatment, nontreatment, and assisted suicide need refinement. One
of the ironies of the law as it currently stands has been described
by a physician in an article in the New England Journal of Medicine
in which he cited two hypothetical patients:
One is 28 years old, despondent over the recent
breakup of a romantic relationship, and because of an acute asthma
attack, temporarily dependent on a ventilator. Apart from asthma,
this person is in good health. The other patient is 82 years old,
is wracked with pain from extensive metastic cancer, and has only
a few weeks to live. Assume that both persons want to end their
lives, the 28-year-old by refusing the ventilator and the 82-year-old
by suicide. Under current law, the 28-year-old has the right to
refuse the ventilator, whereas the 82-year-old generally lacks
the right to assistance with suicide.(1)
People with disabilities report numerous other problems
with the law as it currently stands, including unconsented denials
of treatment, pressure to refuse or discontinue treatments, disregard
of requests for relief from pain, "Do Not Resuscitate" consent forms
hidden within a stack of admission and consent papers, and involuntary
assisted-"suicide."
III.
THE CASES UNDER CONSIDERATION BY THE SUPREME COURT
The United States Supreme Court has before it this term two cases
that raise the question of the legality of physician suicide and
the permissibility of state laws that prohibit it -- Vacco v.
Quill(2) and State of
Washington v. Glucksberg(3).
This section provides a brief summary of those two cases. As a precedential
backdrop, however, it is important to be aware of a prior decision
of the Court -- Cruzan v. Director, Mo. Dept. of Health(4).
In Cruzan, the Court considered the challenge
by the parents of a woman who had been in a coma for seven years
following an automobile accident to the refusal by state hospital
officials and the Missouri Supreme Court to authorize the removal
of a feeding tube keeping Nancy Cruzan alive. The Supreme Court
of the United States upheld Missouri's legal standard for such cases,
which required "clear and convincing evidence" of the patient's
wishes before life support could be removed. In doing so, the Court
recognized that "a competent person has a constitutionally protected
liberty interest in refusing unwanted medical treatment," and assumed
for the purposes of the case that the Constitution "would grant
a competent person a constitutionally protected right to refuse
lifesaving hydration and nutrition."
In its reasoning upholding the Missouri legal framework
restricting the removal of life support for persons not able to
make the decision themselves, the Cruzan Court recognized
Missouri's interests in the protection and preservation of life
and in avoiding erroneous decisions to withdraw life-sustaining
treatment. It noted in passing that "the majority of States in this
country have laws imposing criminal penalties on one who assists
another to commit suicide."
The current cases examine the legality of such state
laws. The Vacco and Glucksberg cases present the Court
with two different legal theories under which physician-assisted
suicide laws have been challenged -- in Vacco, equal protection,
and in Glucksberg, due process.
In Vacco v. Quill,(5)
three terminally ill patients and three physicians who treat terminally
ill patients challenged the constitutionality of New York statutes
that made it a crime (manslaughter) for any person to intentionally
cause or aid another to commit suicide. The plaintiffs challenged
the laws as violating both the due process and equal protection
guarantees of the U.S. Constitution. The trial court dismissed both
claims. On appeal, the United States Court of Appeals for the Second
Circuit ruled that the N.Y. assisted-suicide laws violated the Equal
Protection Clause because they are not rationally related to any
legitimate state interest.(6)
In reaching this conclusion, the Second Circuit reasoned as follows:
New York does not treat similarly circumstanced
persons alike: those in the final stages of terminal illness who
are on life-support systems are allowed to hasten their deaths
by directing the removal of such systems; but those who are similarly
situated, except for the previous attachment of life-sustaining
equipment, are not allowed to hasten death by self-administering
prescribed drugs.(7)
The Second Circuit found that there was no legitimate
state interest to support the difference in treatment between terminally
ill patients on life-support and those seeking assistance in directly
ending their lives. The Supreme Court agreed to review the Second
Circuit's equal protection ruling in Vacco.
State of Washington v. Glucksberg(8)
involves a similar challenge, by four physicians who treat terminally
ill patients, three terminally ill persons, and an organization
that provides assistance to terminally ill persons, to the constitutionality
of a Washington law that makes it a crime for any person who knowingly
causes or aids another person to attempt suicide. The plaintiffs
had challenged the Washington statute under the Equal Protection
and Due Process clauses of the U.S. Constitution. The district court
granted summary judgment in favor of the plaintiffs on both claims.
A panel of the United States Court of Appeals for
the Ninth Circuit initially reversed the decision on both grounds,
but on rehearing en banc, the Ninth Circuit ruled that the Washington
statute violates due process. It began its analysis by finding that
there is a constitutionally protected liberty interest "in choosing
the time and manner of one's death," and more particularly that
"[a] competent terminally ill adult, having lived nearly the full
measure of his life, has a strong liberty interest in choosing a
dignified and humane death rather than being reduced at the end
of his existence to a childlike state of helplessness, diapered,
sedated, incontinent."
The Ninth Circuit then weighed these liberty interests
of the terminally ill patient against the state's interests in preserving
life, preventing suicide, in avoiding the taking of life due to
"a fit of desperation, depression, or loneliness or as a result
of any other problem, physical or psychological, which can be significantly
ameliorated," and in avoiding deaths result from undue influence
by family members and physicians. The Ninth Circuit ruled that some
of these interests were diminished because the patient's life was
going to end anyway, and that the others could be better served
"through procedural safeguards, rather than through a complete ban
on assisted suicide."
The Supreme Court agreed to review the Second Circuit's
due process ruling in Glucksberg. The Court heard oral arguments
on the Vacco and Glucksberg cases on January 8, 1997.
IV.
PERSPECTIVES OF INDIVIDUALS WITH DISABILITIES
Many people are interested in the subject of assisted suicide. Many
in the medical profession, including physicians, nurses, and hospital
administrators have spoken out about their views on these matters,
and the American Medical Association has taken a position. Ethicists
and religious officials have articulated their analyses. Organizations
for and against assisted suicide have advocated for their respective
positions. Family members of persons with terminal illnesses have
had strong feelings on these issues. The courts, including the Supreme
Court of the United States, have increasingly been asked to address
these types of issues.
Another group whose constituents often have strong
views about assisted suicide is people with disabilities. Given
that persons suffering from terminal illnesses and those experiencing
severe pain almost always meet the definition of individuals with
disabilities, and that people with disabilities run the risk of
being subject to life-shortening measures even when they may not
in fact have life-threatening conditions, the views and insights
of people with disabilities would seem to be very significant to
the debate on this issue. And yet the viewpoints of individuals
with disabilities have been, if not ignored, at least not a major
piece of the public and judicial debate on this issue.
In submitting amicus curiae briefs in the
two Supreme Court cases addressing physician-assisted suicide cases,
the Solicitor General and Department of Justice Attorneys were required
to identify the interests of the United States in the litigation
that justified its involvement in the cases. In its briefs, the
United States pointed to two such interests -- the fact that the
United States owns and operates health care facilities (such as
V.A. hospitals and nursing homes), and the fact that federal law
requires health care providers receiving Medicaid and Medicare funds
to inform patients that they have a right to refuse life-sustaining
treatment and to record any directives in this regard they may have.
Seemingly much more directly relevant, but not mentioned in the
briefs, is the fact that under the federal Rehabilitation Act and
the Americans with Disabilities Act the United States, through the
Department of Justice, is responsible for enforcement of requirements
that people with disabilities not be discriminated against by federal,
state, and private hospitals and other health care providers. This
duty of ensuring that people with disabilities are treated equally
in regard to medical treatment is not relied upon, nor even mentioned,
in the Department of Justice briefs.
A. A Split of Opinion?
Within the disability community, divergent opinions about assisted
suicide have given rise to heated debates; advocates for the differing
positions articulate strong arguments that theirs is the more informed
position or is more representative of a majority of individuals
with disabilities. The absence of a single consensus viewpoint within
the group does not mean, however, that the opposing views cancel
one another out; each of the viewpoints is significant. The two
separate points of view in the disability community are each voicing
a legitimate and weighty concern that is rooted in the disability
experience.
On the one hand, those individuals with disabilities
and organizations who favor assisted suicide help to point out that
people with disabilities are entitled to, and in the past have often
been deprived of, the opportunity to make full choices for themselves.
Individuals with disabilities should be entitled, says this view,
to make their own life choices without interference from medical
personnel and society at large, particularly when the choice is
one to avoid unbearable pain by foregoing a few days, weeks, or
months of additional life. Other members of the disability community
and organizations representing them argue that assisted suicide
has and will be used to cut short the lives of people with disabilities
whose quality of life and worth as human beings have long been egregiously
undervalued by society. Each of these viewpoints has considerable
basis in truth. And both of them are motivated by an underlying
desire that people with disabilities be accorded a position of dignity
and equality in American society. The National Council on Disability
believes that articulating with more particularity the various insights
of people with disabilities that bear upon the decisions whether
or not to prolong and whether or not to abet the shortening of life
of individuals with serious medical conditions will provide considerable
guidance and enlightenment as to how these issues should be resolved
and the way laws ought to address such matters in the future.
B. Insights from the Disability Experience
1. The Paramount Issue -- Rights, Services,
and Options
Arguments for or against assisted suicide in particular
situations are often framed in terms of future quality of life of
the affected individual. These appraisals of life quality of people
with disabilities occur in a context -- the opportunities, impediments,
services, burdens, rights, responsibilities, pleasures, suffering,
assistance, and obstacles that the individual can expect in her
or his situation in our society. In large part, this context is
defined by society's treatment of people with disabilities -- the
barriers it has erected or tolerated, or prohibited and removed;
the rights it has recognized and enforced, or denied, ignored, or
not implemented; the services it has provided or fostered, or refused
or neglected to provide; the independence and options it has conferred
and promoted, or the dependence it has accepted and perpetuated;
the suffering it has allowed or condoned, or addressed and ameliorated;
the isolation and invisibility it has imposed or accepted, or the
integration and participation it has instilled; the choices it has
enabled and respected, or its withdrawal of the very liberty to
make choices or acquiescence to the absence of any real choices.
The National Council believes that the issue of assisted
suicide should be viewed as interrelated with more basic, general
issues of the rights, opportunities, and status of people with disabilities
in our nation and of the services, programs, policies, options,
and choices our society makes available for people with disabilities.
In its July 1996 report to the President and the Congress, Achieving
Independence: The Challenge for the 21st Century, the Council
presented over 120 recommendations addressing 11 broad topic areas
for improving laws, policies, programs, and services for people
with disabilities. Implementing the recommendations in Achieving
Independence would go a long way toward assuring that any self-assessment
or decision about the quality of life of an individual with a disability
would be made in an optimal context of independence, equality of
opportunity, full participation, and empowerment.
In addition, people with terminal illnesses would
benefit greatly from expanded availability of hospice services.
These programs provide a team-oriented program of care that seeks
to treat and comfort persons with terminal conditions in their homes
or in home-like settings, with an emphasis on pain management and
control of symptoms.(9) They
seek to ameliorate the psychological, spiritual, and physical pain
that may be associated with the process of dying, and they provide
support for family members and friends while their loved one is
dying, and bereavement care after the person has died.(10)
More than 90% of hospice care hours are provided in patients' homes,
thus substituting for more expensive and more disorienting hospitalization.(11)
Studies indicate great savings in hospice costs versus alternative
forms of treatment.(12) And
yet such programs are not yet as widely available as they need to
be.(13)
People with disabilities have long tried to convince
the rest of society that the most serious problems facing those
who have disabilities often arise, not from the disability itself,
but from societal attitudes toward and treatment of individuals
with disabilities. In 1975, a United Nations Expert Group declared
that
despite everything we can do, or hope to do, to
assist each physically or mentally disabled person achieve his
or her maximum potential in life, our efforts will not succeed
until we have found the way to remove the obstacles to this goal
directed by human society -- the physical barriers we have
created in public buildings, housing, transportation, houses of
worship, centers of social life, and other community facilities
-- the social barriers we have evolved and accepted against
those who vary more than a certain degree from what we have been
conditioned to regard as normal. More people are forced into limited
lives and made to suffer by these man-made obstacles than by any
specific physical or mental disability.(14)
This idea that external factors are more damaging
than the characteristics of disability itself is an important insight
in trying to evaluate options for dealing with the impact of medical
conditions and living with impairments. It suggests that people
are likely to have much more success in dealing with their disabilities
if they are informed about accommodations and services they may
be able to use, and if there are sufficient support services and
resources in place to assist in the individual's efforts to cope
with the situation. In one dramatic example, Larry McAfee, a Georgia
man who was involved in a motorcycle accident that left him quadriplegic
and dependent on a ventilator, went to court to establish his right
to discontinue the ventilator with the expectation that he would
die.(15) Publicity about the
case led, however, to communications with disability advocates and
an outpouring of community support. Buoyed by this information and
support, McAfee refused to exercise his court-recognized "right
to die," fought to be released from a nursing home, and got himself
a job.
The McAfee outcome is in stark contrast with
the situation of Kenneth Bergstedt who, with disabilities similar
to McAfee's, had his ventilator discontinued and died, principally
because he feared being forced to live in a nursing home after the
death of his father. The Nevada Supreme Court, ruling after Bergstedt's
death, concluded that his "suffering resulted more from his fear
of the unknown than any source of physical pain," and noted that
he did not have a realistic understanding of his options sufficient
to make an intelligent life-or-death decision.(16)
Reviewing the limited assistance afforded Bergstedt before his death,
a dissenting judge commented: "With this kind of support it is no
wonder that he decided to do himself in."(17)
If he were still alive, said the court, "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."(18)
The Bergstedt situation focuses on patients'
being provided accurate information about services, support, and
other resources. Equally or more important, however, is that adequate
support systems and options be in place and available. People with
disabilities facing medical treatment decisions need both information
about options and the availability of the options themselves. Such
community support services may take a variety of forms -- counseling,
independent living services, vocational rehabilitation, treatment
of depression, contact with disability peers and organizations,
clear and understandable medical information, financial resources,
housing options, transportation options, assistive devices, interpreters
and personal care assistance, various types of therapy, job training,
and others.
Clearly the elimination of discriminatory barriers
and the availability of support services and financial resources,
including adequate health insurance, will greatly impact the chances
that a person will successfully deal with a disability. In the final
analysis, most people with disabilities would welcome the same amount
of attention for community support services and resources, and the
kinds of efforts recommended in Achieving Independence as
is currently being focused on the issue of assisted suicide.
2. The Reality and Prevalence of
Discrimination The opposing views within
the disability community on the issue of assisted suicide share
a common ground -- a recognition of the danger of discrimination
to the interests and fair treatment of people with disabilities.
Those opposed to assisted suicide fear that deeply ingrained prejudice
and patterns of undervaluing the worth of individuals having disabilities
have led and will predictably continue to lead to the unnecessary
deaths of persons with disabilities. Those who believe that people
with disabilities should have access to physician-assisted suicide
point out that one of the principle dynamics that have prevented
people with disabilities from occupying a position of equality and
dignity in society has been the denial of the right of people with
disabilities to make their own choices, and that other people have
often imposed undesired life choices upon people with disabilities.
Neither point of view doubts the existence of discrimination against
people with disabilities.
On many previous occasions, the Council has discussed
and documented the existence of widespread and virulent discrimination
on the basis of disability. The existence of such discrimination
and the deleterious effect that it has upon citizens with disabilities
and our Nation were primary reasons that in 1986 the Council proposed
the enactment of the Americans with Disabilities Act (ADA). In enacting
the ADA, Congress expressly found that "historically, society has
tended to isolate and segregate individuals with disabilities, and
despite some improvements, such forms of discrimination continue
to be a serious and pervasive social problem."(19)
Further, it declared that individuals with disabilities "have been
faced with restrictions and limitations, subjected to a history
of purposeful unequal treatment, and relegated to a position of
political powerlessness in our society.(20)
Congress also made findings that such discrimination persists in
the critical areas of "health services ... and access to public
services."(21) Discrimination
against people with disabilities in regard to medical treatment
had previously examined by the U.S. Commission on Civil Rights which
concluded that people with disabilities "face discrimination in
the availability and delivery of medical services" including the
"withholding of lifesaving medical treatment."(22)
The deep-seated nature of discrimination on the basis of disability
has been widely acknowledged and documented by numerous other authorities.(23)
Discrimination against them because of their disabilities
is a daily experience of many individuals with disabilities.
3. Deprivation of Choices and the
Importance of Self-Determination Many people
with disabilities subscribe to an approach to living with disabilities
that is termed "independent living." The Council has endorsed the
independent living philosophy and it has been embraced in various
federal statutes.(24) The U.S.
Commission on Civil Rights has observed that a key element of independent
living is self-determination for individuals with disabilities:
"Independent living programs insist on `client self-choice rather
than incorporation of the client into a set of goals established
by program managers, service professionals, or funding mechanisms
. . . ."(25) At the core of
the independent living philosophy is a conviction that people with
disabilities "desire to lead the fullest lives possible, outside
of institutions, integrated into the community, exercising full
freedom of choice."(26) One
disability advocate has elaborated:
Independent living is . . . to live where and how
one chooses and can afford. It is living within the community
in the neighborhood one chooses. It is living alone or with a
roommate of ones choice. It is deciding ones own pattern of life-schedule,
food, entertainment, vices, virtues, leisure, and friends. It
is freedom to take risks and freedom to make mistakes.(27)
Regarding the latter point, some authorities have
described the "dignity of risk," a concept that counters overprotection
of people with disabilities by advocating a right of such people
to take normal risks.(28) One
commentator has observed: "The dignity of risk is what the independent
living movement is all about. Without the possibility of failure,
the disabled person is said to lack true independence and the mark
of ones humanity -- the right to choose for good or evil."(29)
1992 amendments to the Rehabilitation Act increased
the focus on independent living and spelled out in more detail the
approach that Congress understood to be represented by that phrase.
Congress found that
disability is a normal part of the human experience
and in no way diminishes the right of individuals to -- (A) live
independently; (B) enjoy self-determination; (C) make choices;
(D) contribute to society; (E) pursue meaningful careers; and
(F) enjoy full inclusion and integration in the economic, political,
social, cultural, and educational mainstream of American society.(30)
Congress also declared that "the goals of the Nation
properly include the goal of providing individuals with disabilities
with the tools necessary to -- (A) make informed choices and decisions;
and (B) achieve . . . independent living . . . for such individuals."(31)
However phrased, it is clear that equality and dignity
for people with disabilities are strongly connected to the ability
to of individuals with disabilities to make important life choices
for themselves.
4. Others' Underestimation of Life
Quality One of the hallmarks of societal
attitudes toward disabilities has been a tendency of people without
disabilities to overestimate the negative aspects and underestimate
the positive features of the lives of those who have disabilities.
The attitude of "I don't see how you can live with that" -- sometimes
expressed more dramatically as "I'd rather be dead than have [X
disability]" -- is one that people often exhibit in their encounters
with people with disabilities.
The U.S. Commission on Civil Rights has described
the "extremely extensive" negative connotations of disability: "To
the fact that a [person with a disability] differs from the norm
physically or mentally, people often add a value judgment that such
a difference is a big and very negative one."(32)
The United States Supreme Court has acknowledged that "society's
accumulated myths and fears about disability are as handicapping
as are the physical limitations that flow from actual impairment."(33)
Regulations and courts addressing job discrimination based on disability
under the ADA and other laws have expressly identified the discrimination
that results from misperceptions and unrealistically low expectations
of what people with disabilities are able to do.(34)
One legal commentator has written that "[t]he image of a [person
with a disability] as one who is not able to do many things, who
is unable to fill a proper role in society, and who is not a success
in terms of achievements or happiness is widespread and deep-seated."(35)
In reality, such attitudes and negative predictions
of life quality have little to do with the actual life experiences
of people with disabilities. People with disabilities commonly report
more satisfaction with their lives than others might have expected.
Though they commonly encounter obstacles, prejudice, and discrimination,
most people with disabilities manage to derive satisfaction and
pleasure from their lives. After conducting a nationwide poll of
people with disabilities, Louis
Harris and Associates reported that "[d]espite their
disadvantaged status and frequent exclusion from activities enjoyed
by most Americans, a large majority of disabled Americans are satisfied
with their lives"; the Harris organization described this as "a
remarkable finding in light of the portrait of hardships revealed
in these survey findings."(36)
Even individuals who identified themselves as having very severe
disabilities tended to report that they were very or somewhat satisfied
with their lives.(37)
Nor do disabilities generally have the devastating
effect upon the social milestones of marriage and having children
that some might expect. There is virtually no difference between
the proportion of Americans with disabilities and those without
who are married,(38) and most
people with disabilities do not consider their disability to have
much impact on their ability to have children or their interest
in doing so.(39) Even people
with severe pain and highly invasive medical treatments report higher
life satisfaction than others expect.(40)
The realities of quality of the lives of Americans
with disabilities is obscured by the misguided projections and low
expectations of others, for as one disability authority has observed,
"when society opts to judge the quality of life for an individual
with a disability, it does so from the perspective of a fear of
disability and historical prejudice and discrimination."(41)
5. Fallibility of Medical Predictions
Many people with disabilities have been great
beneficiaries of the miracles of modern medicine. Some owe their
very lives and others much of their ability to function to the medical
profession. Lifesaving treatments, rehabilitative surgical techniques,
new medications, and numerous other medical advances have greatly
improved chances for survival, the amelioration of limitations,
and options for accommodating disabilities. And yet people with
disabilities have also frequently seen firsthand evidence that medicine
is not totally a science but still something of an art, particularly
in regard to the imperfections of medical prognosticating. Individuals
with disabilities and parents of children with disabilities have
encountered numerous kinds of fervently pronounced, but inaccurate
predictions by members of the medical professional. Some have been
told that they or their children would not survive, or would not
regain consciousness, or would not walk, or would not read, or would
not be toilet-trained, or could not live independently, or could
not perform particular activities, and yet ultimately found these
predictions to be wildly inaccurate. Other people have been confined
and subjected to involuntary treatment regimes based upon notoriously
unreliable predictions about their supposed proclivities, ability
to cope, or even dangerousness, based upon the application of psychiatric
labels.
Predictions of patients' life expectancy are particularly
difficult and unreliable.(42)
Indeed, "[a] surprising number of people have had the experience
of being misinformed that they had a terminal illness."(43)
Evan Kemp, former chairman of the Equal Employment Opportunity Commission,
who was diagnosed with a progressive neuromuscular disease at age
12, has written:
Upon diagnosis, my parents were informed by the
physicians treating me that I would die within two years. Later,
another group of physicians was certain that I would live only
to the age of 18. Yet here I am at age 59, continuing to have
an extraordinarily high quality of life.
And my case is by no means unique. The majority
of families I have encountered in my lifetime, and who have been
close enough to share details of their extended family life, have
had at least one member who defied the medical establishment by
living a far longer and more productive life than expected.(44)
One noteworthy example of erroneous medical predicting
grew out of an early, widely publicized court case(45)
in which permission was sought to discontinue a ventilator for a
comatose young woman named Karen Quinlan. There was no dispute among
the medical experts that without the assistance of the ventilator
Ms. Quinlan would die in a matter of days or weeks, if not hours.
After the New Jersey courts approved discontinuance of the ventilator,
it was removed, but Karen Quinlan stayed alive, breathing on her
own, for almost ten years. However one feels about the court's decision
in the Quinlan matter, it is clear that the medical forecasting
was substantially erroneous in this highly visible, carefully considered,
fully-litigated situation. This is not to suggest that most or even
a substantial portion of medical forecasting is erroneous, but people
with disabilities are aware of enough instances of dramatic mistakes
that many of them have a healthy skepticism of medical predictions,
particularly as it relates to future life quality. Medical personnel
are generally not very knowledgeable of special education and rehabilitation
techniques, specialized accommodations, independent living philosophy,
and other factors that may spell the difference between a direly
limited or a satisfying and fulfilling future for an individual
with a disability.
6. Eschewing the Medical Model of
Disabilities In its Achieving Independence
report, the Council observed that a "disability rights perspective
... stands in contrast to a medical model, which views people with
disabilities as needing to be cured.'"(46)
The medical model imposes certain expectations upon both the medical
personnel and the "patient."(47)
It places primary responsibility for diagnosis and treatment in
the hands of medical practitioners. Physicians are deemed to be
the technically competent experts for addressing the patient's needs
through an established chain of command to other medical personnel.
The patients, for their part, are expected to play the roles of
"sick" or "impaired" persons; this entails an exemption from some
ordinary social activities and responsibilities, and an expectation
that they will cooperate with the attending medical practitioners
in "getting well."(48) The medical
model views people with disabilities as "victims" of a medical problem
in need of treatment, not as responsible adults in need of rights
and respect.(49)
People with disabilities have first-hand experience
with the medical model in various service delivery systems including
hospitals and some rehabilitation facilities, and sometimes, often
in its most egregious form, in mental health treatment facilities.
The application of the medical model in the mental health context
has been widely described and vehemently criticized by various commentators.(50)
Frequently, it has involved the involuntary institutionalization
of individuals based upon a dubious psychiatric diagnosis, enforced
confinement on locked wards in a control-oriented regime with limited
freedoms conditioned upon compliance with the rules of the facility,
as well as "treatment" which may be unwanted, most frequently the
administration of powerful psychotropic drugs or controversial electroshock
"therapy." As commentators have noted: "First and foremost, programs
reflect the medical model mentality that perceives people with mental
disabilities as perpetual patients, with the resultant infantilization
that so often accompanies that status."(51)
Many people with disabilities reject the behavioral
expectations imposed upon them by such roles, and "do not want to
be relieved of their familial, occupational, and civic responsibilities
in exchange for a childlike dependency."(52)
Clearly the medical model is contrary to the notions of independent
living, consumer self-direction, and freedom of choice discussed
in section 3 above. From an independent living perspective,
the pathology is not in the individual, as the medical
model would suggest, but rather in the physical, social, political
and economic environment that has up to now limited the choices
available to people with disabilities. The solution to these problems
is not more professional intervention but more self-help initiatives
leading to the removal of barriers and to the full participation
of disabled people in society.(53)
Again, this is not to suggest that people with disabilities
have not received great benefits from various medical interventions,
assuming truly informed consent has been obtained -- from treatments
and therapies provided by medical personnel and from the treatment
techniques, devices, and medications available at modern medical
facilities. Nonetheless, many people with disabilities view the
medical model as a poor prism, for themselves and our society, through
which to view the reality of their lives with disabilities.
7. The Impact of Onset of Disability
Upon Emotional State and Decision-Making
When a person is not born with a disability, the onset of a substantially
impairing condition and the awareness of one's new physical or mental
limitations usually come as a blow to a person's self-image and
psychological balance. Disabilities that are the result of violence,
accident, or illness usually are accompanied by additional emotional
repercussions. The inception of disabilities is often associated
with a period of hospitalization or other intense medical intervention
that adds additional disorientation. Pain and medication may take
an additional toll on emotional equilibrium. Family members and
friends may be devastated by what has happened and find it hard
to relate to the individual in ways they normally did in the past.
Neither the individual with the new disability nor friends and family
members may have any idea how people adapt to such a condition,
any concept of rehabilitation possibilities, nor a clue that many
people are living fulfilling and joyful lives with the same or even
more severe conditions. To a person newly confronted with the realization
that he or she has a disability, it may appear that the "whole world
has been turned upside down." Strong feelings of fear, helplessness,
anger, sadness, shame, and confusion are common.
It is typical, therefore, for people who have recently
been confronted with a disability to experience a period of disorientation
and depression. With proper assistance and information, such disorientation
and depression usually abate over time. It may follow a pattern
of denial, anger, hopelessness, adjustment that characterize the
grieving process for various kinds of serious losses. Sometimes
medication, psychotherapy, or other treatment may be necessary to
help deal with lingering depression. Most people with disabilities
gradually come to accept and live constructively with their disabilities.
They may undergo rehabilitation and learn techniques for adapting
to and surmounting limitations; they may discover that there are
devices and accommodations that will make them more independent,
productive, and comfortable; they may find that many other people
have similar conditions and managing to do quite well anyway. Generally
the feelings of helplessness and sadness fade away to a manageable
level over time.
The existence of a normal period of disorientation
and depression following the acquisition of a disability makes it
imperative that people in such a situation not try to make long-term
or irreversible decisions that may be colored by the temporary depression
and disorientation rather than by an exercise of sound judgment.
Medical personnel cannot be counted on to distinguish between the
two situations, for "physicians responding to requests for assistance
are often inadequately trained to distinguish rational requests
from those driven by depression."(54)
The experience of numerous people with disabilities is that they
would have been unable to make truly rational decisions while still
in the throes of the unsettled state of mind that commonly accompanies
the onset of a disabling condition. Moreover, during such a period
of confusion and emotional instability, people are particularly
vulnerable to duress, intimidation, and coercion by those around
them.
In addition, people newly confronted with a disability
"may have internalized society's prejudices against persons with
disabilities or developed fears about living with a disability.
With counseling and time, however, such notions or feelings can
dissipate."(55) With proper
information, support, and care, the depths of disorientation and
overwhelming sadness will usually ease with the passage of time
and the person with a new disability will have a chance to integrate
the idea of having a disability, to learn ways to manage it and
its consequences, and to return to the quest confronting all human
beings of trying to wrest a reasonable degree of happiness and fulfillment
from our existence.
8. The Reality of Living with Pain
and Bodily Malfunction Some individuals with
disabilities have had to confront severe pain, sometimes chronic
pain, and have experienced the two-edged reality of living with
such pain. On the one hand, they have encountered the truly debilitating
effects of chronic pain that saps one's strength and drains one's
psyche. Only persons who have experienced significant, long-term
pain fully understand its crushing impact. On the other hand, many
people have learned firsthand that there are a variety of techniques
for treating pain, including various medications, biofeedback, nerve
treatments, hypnosis, and other nonobtrusive alternative medical
treatments. Moreover, even in the rarer situations where pain is
essentially untreatable, some individuals have learned to successfully
live with their pain, and report life satisfaction and desire to
continue living despite their pain.(56)
From these varying experiences, one learns that some
people's pain can be treated and ameliorated, others can learn to
manage and live with their pain, and still others experience pain
that cannot be eased and that they find themselves unable to endure.
The very real impact of chronic, severe, untreatable pain should
not be underestimated.
People with disabilities also have considerable experience
in dealing with the malfunctioning, breakdown, or absence of normal
body parts or mental processes. Having learned to deal with such
imperfect functioning as part of their ongoing day-to-day existence,
people with disabilities are much less likely to be horrified by
such physical or mental dysfunction. Consequently, people with disabilities
tend to be much more aware than the general public that one can
lead a valid, happy life even though one's legs or eyes or arms
or memory or bladder or ears or mouth or brain or genitals or sensory
processing or hands or whatever other parts of the body or mind
are not working properly.
A key implication of people with disabilities' experience
with pain and dysfunction is the need for more frequent and informed
use of pain relief medication. The American Medical Association
(AMA) and the United States Government have both acknowledged that
physicians have not done an adequate job in treating pain.(57)
To address this problem, the AMA, the American Board of Internal
Medicine, the American Academy of Hospice and Palliative Medicine,
and other medical organization have undertaken various initiatives
to improve the training and continuing education of doctors in pain
relief measures for persons with terminal medical conditions.(58)
According to medical authorities, many physicians are not sufficiently
familiar with the use of various treatments, including heavy doses
of morphine, to control pain in dying patients.(59)
Medical ethics standards permit doctors to prescribe medication
to relieve pain even if the necessary dose will hasten death.(60)
Better training of physicians in techniques and standards for treatment
of pain should be a primary goal, so that all individuals who are
confronted with serious pain can have maximum relief. Moreover,
hospice and other programs and treatments to make the process of
dying more comfortable and peaceful should be made widely available.
9. Divergent Interests of Those
Involved in Assisted Suicide Decisions As
they have undertaken to attain independence and self-determination
in their lives -- to make the kinds of choices regarding their own
activities, living arrangements, and means for pursuing happiness
that other Americans take for granted -- citizens with disabilities
have become sharply aware of the fact that their interests often
diverge from those of others who would seek to act "in their best
interest." Medical personnel, officials of residential and other
care-giving facilities, religious officials, social workers, rehabilitation
professionals, and even family members often have views as to what
would be best for an individual with a disability that are drastically
different from what she or he actually wants. This becomes particularly
true when there may be other interests or agendas being pursued
by these other parties.
Decisions about medical care are particularly subject
to such separate, and often conflicting, interests in the outcome.
Physicians may have concerns about prolonging treatment of patients
whom they are unable to "cure," and psychological pain about continuing
to see patients for whom they have "failed." Or they may have pressures
from too heavy a patient load. Overcrowded medical facilities may
need "the bed" that the patient is occupying. The doctor and the
medical facility may be concerned about insurance limits on extended
treatment or the exhaustion of financial resources of the patient
or the patient's family, and fear that the bill for continued care
will never be paid. Conferring medical peers may have various motivations
including mutual backscratching, professional deference, or career
goals that render peer review a mere rubberstamping. Other medical
personnel and related professionals may have their own personal
or philosophical axes to grind.
Family members may have any number of tensions, disputes,
agendas, and pressures, not the least of which may be financial
concerns, or emotional strain or exhaustion from the ordeal of extended
medical treatment of a family member or of having a close relative
diagnosed with a terminal condition. In what hopefully are rarer
cases, a close relative may have actual animosity toward the person
who is undergoing treatment or may be involved in a love triangle
or some other conflict-filled situation.
People with disabilities would generally be unwilling
to let doctors, nurses, medical review panels, or their own families
make judgments in their place concerning something as important
as their health and very life.
V.
CONCLUSIONS Based upon the foregoing insights
derived from the experience of people with disabilities and the
existing legal framework, the National Council on Disability has
grappled to arrive at a constructive, principled position on the
issue of physician-assisted suicide for persons with imminently
terminal conditions. To some degree this effort has appeared to
be like the plight of the mythical Jason whose ship, the Argo, had
to sail between the two monsters Charybdis and Scylla -- neither
choice is very appealing.
Opposing the legalization of assisted suicide seemingly
deprives people with disabilities faced with imminent death and
severe pain the only power they can have to decide when and how
they will die, an ability to choose that might offer them some control,
dignity, and measure of self-determination in an otherwise bleak
situation; such control of one's own destiny, freedom of choice,
and self-determination are key principles of the disability rights
and independent living philosophies and cornerstones of the initiatives
which the Council has advocated.
On the other hand, legalizing assisted suicide seems
to risk its likely use, the ultimate manifestation of prejudice
against people with disabilities in our society, as a means to unnecessarily
end or to coerce the end of people with disabilities' lives; persons
with disabilities know that many in society believe that they would
be better off dead, and legalized assisted suicide offers a subtle
and sometimes-not-so-subtle way to make that judgment a reality.
To resolve this dilemma, the Council has weighed
the pros-and-cons very carefully. Among other considerations, it
has found the following to weigh very heavily in its deliberations:
The Current Situation
Under current law, most people who choose to commit
suicide can do so without the assistance of a physician. Only a
small number of people having disabilities are unable to terminate
their lives if they choose to do so. Patients have the right to
refuse medical treatments, even lifesaving or life-prolonging measures;
informed consent of the patient is a legal prerequisite for the
initiation or continuation of medical treatment. Physicians are
permitted under current medical standards to prescribe medication
as necessary to control pain, even if the necessary dosage will
result in hastening the patient's death. Most, though not all, pain,
even if severe, can be controlled by the proper administration of
medication; better training of physicians would improve effective
treatment of pain. Many individuals learn to live satisfying lives
in spite of experiencing severe pain.
People with disabilities' lives are frequently viewed
as valueless by others, including members of the medical profession.
People with disabilities are often harassed and coerced to end their
lives when faced with life-threatening conditions, even if the conditions
are imminently treatable; others have had their lives involuntarily
terminated by medical personnel. These practices manifest blatant
prejudice and are a virulent form of the discrimination that the
Americans with Disabilities Act and other laws condemn. Legal and
medical authorities should denounce and prohibit any attempt to
pressure, harass, or coerce any individual to shorten her or his
life; they should certainly proscribe any action to terminate an
individual's life taken without that person's full, voluntary, and
informed consent, whether it be called "suicide," "mercy killing,"
"letting nature take its course," or some other euphemistic term.
And certainly there should be official condemnation and cessation
of practices by which people with disabilities are pressured to
sign "Do Not Resuscitate" consent forms, or such forms are hidden
within a stack of admission and consent papers in the hope that
the individual with a disability will sign them without paying attention
to what is being signed.
Procedural Protections
As a potential escape hatch from the dilemma described
above, the Council considered the possibility that a properly devised
set of procedural protections could permit physician-assisted suicide
to occur in limited circumstances while preventing it from being
abused or applied improperly to the disadvantage of people with
disabilities. There have been various proposals of such procedural
safeguards or the elements they should contain.(61)
An article in the New England Journal of Medicine proposed
a system in which treating physicians would be prohibited from complying
with a patient's request for assisted suicide unless the request
was approved by a physician "palliative care specialist" and by
a "regional palliative care committee" with both lay and professional
members.(62) In the Netherlands,
assisted suicides (and active euthanasia) are permitted by the courts
if they satisfy nine criteria that impose a combination of substantive
platitudes and procedural standards:
(1) The patient must be suffering unbearably; (2)
the patient must be conscious when he expresses the desire to
die; (3) the request for euthanasia must be voluntary; (4) the
patient must have been given alternatives with time to consider
them; (5) there must be viable solutions for the patient; (6)
the death must not inflict unnecessary suffering on others; the
decision must involve more than one person; (8) only a physician
may perform the euthanasia; and (9) the physician must exercise
great care in making the decision.(63)
These limited procedural protections have certainly
not worked. As Representative Charles Canady, Chair of the Subcommittee
on the Constitution of the U.S. House of Representatives has reported,
the Netherlands procedures "give an enormous amount of discretion
to doctors, and, consequently, give very little protection to patients."(64)
As a result, non-voluntary euthanasia is being widely performed
in the Netherlands.(65)
One of the briefs filed in favor of legalizing physician-assisted
suicide in the pending Supreme Court cases suggested that states
might impose the following safeguards:
- requiring the individual to repeat the request
on more than one occasion;
- requiring the request to be made to more than
one doctor;
- requiring the individual to be provided an opportunity
to discuss the problem with a mental health professional;
- requiring the individual to be informed of programs
and resources that are available to improve the quality of his
or her remaining life; and
- requiring the individual to be informed on several
occasions that he or she may, and is encouraged to, change his/her
mind at any time.(66)
The vigorous implementation of these various proposals
would still fall far short of protecting the rights and interests
of people with disabilities. To effectively limit assisted suicides
to appropriate situations and make certain that they do not become
a vehicle for fatal discrimination against people with disabilities,
such procedures would, at a minimum, have to ensure: that the patient's
diagnosis is completely accurate; that the condition of the patient
is definitely terminal; that the patient's death is imminent; that
there are no available treatments that can save or significantly
prolong the patient's life; that the patient is suffering unendurable
pain and this pain cannot be controlled by medication or alternative
treatments or therapies; that the patient wishes to commit suicide;
that the patient's decision is based upon full information about
the patient's diagnosis, prognosis, and options and the patient
has understood this information; that the patient's desire to die
is not a result of temporary dejection resulting from disorientation,
adjusting to new limitations, or other causes; that the patient's
desire to die is not a result of prejudice, stereotypes, and misinformation
about people with disabilities and living with a disability; that
the patient's decision to seek suicide is reached only after the
patient has received, from knowledgeable disinterested sources,
a thorough exploration and explanation of treatment options, rehabilitative
techniques, assistive devices, accommodations, etc., for living
successfully with the patient's disabilities; that the patient has
had the opportunity to meet and talk at length with people living
with similar disabilities; that the patient has made the decision
to choose suicide freely without being influenced by coercion, harassment,
intimidation, or duress; that the patient has requested physician
assisted suicide repeatedly over a sufficiently long period of time
to ensure that it represents a determined steady conviction to end
his or her life; that the patient is unable to commit suicide without
the assistance of a physician; and that there is oversight by responsible,
objective, disinterested, and impartial authorities who can verify
whether or not the foregoing prerequisites to a patient's decision
to choose suicide have been satisfied.
It may be possible to construct procedural safeguards
to ensure that some of these elements are fulfilled in particular
circumstances. Given the current state of medical science and human
institutions, however, it may be nearly impossible for some of these
prerequisites to be satisfied. The diagnosis that conditions are
terminal and that death is imminent are not totally reliable. Relative
assessments of pain and the state of mind or motivation of patients
are not objectively measurable and thus are hard to verify. Medical
personnel with an agenda of promoting assisted suicide may influence
patients and manipulate the procedural safeguards. Individuals who
are hospitalized, medicated, and faced with a serious health problem
are very vulnerable to subtle psychological pressures from their
care providers and loved ones. Medical reviews and second opinions
are subject to professional deference and conflicts of interest.
Can medical authorities realistically attest that the patient has
received adequate information about resources, accommodations, assistive
devices, and other matters enhancing one's option in living with
a disability?
More importantly, however, the more stringent and
encompassing one seeks to make procedural safeguards in this context,
the more intrusive they become, and the greater the extent to which
doctors and psychiatrists become the gatekeepers. Putting the procedures
in a judicial or quasi-judicial setting would not avoid this problem,
because most of the testimony and opinions would still have to come
from medical practitioners, consultants, and experts; the medical
profession would still serve as gatekeepers, but now there would
be lawyers and judges involved too as overseers. Establishing with
certainty that a particular patient has the mental competence and
emotional balance for making the decision to die will inevitably
involve psychiatric evaluations. As the procedural noose tightens
to prevent erroneous and inappropriate assisted suicides, the individual's
privacy and control of the situation fly out the window, and the
medical model runs rampant. Ironically, the pursuit of assisted
suicide in the name of individual liberty would wind up necessitating
egregious restrictions and highly invasive participation by members
of the medical and legal professions.
Weighing the Dangers of Physician-Assisted
Suicide Against its Benefits The benefits
of permitting physician-assisted suicide have been ably argued by
advocates of its legalization. They include respect for individual
autonomy, liberty, and the right to make one's own choices about
matters concerning one's intimate personal welfare; affording the
dignity of control and choice for a patient who otherwise has little
control of her or his situation; allowing the patient to select
the time and circumstances of death rather than being totally at
the mercy of the terminal medical condition; safeguarding the doctor/patient
relationship in making this final medical decision; giving the patient
the option of dying in an alert condition rather than in a medicated
haze during the last hours of life; and, most importantly, giving
the patient the ability to avoid severe pain and suffering. Some
of these benefits for the individuals involved are substantial and
should not be discounted.
Whatever beneficial consequences of physician-assisted
suicide there may be, however, the benefits only apply to the small
number of people who actually have an imminently terminal condition,
are in severe, untreatable pain, wish to commit suicide, and are
unable to do so by themselves. Many terminal patients enduring pain
do not wish to terminate their lives.(67)
Most of those who do can do so without a doctor's involvement. The
dangers of permitting physician-assisted suicide are large indeed.
The pressures upon people with disabilities to choose to end their
lives, and the insidious appropriation by others of the right to
make that choice for them are already way too common in our society.
These pressures are increasing and will continue to grow as managed
health care and limitations upon health care resources precipitate
increased "rationing" of health care services and health care financing.(68)
There is no doubt that people with disabilities are
among society's most likely candidates for ending their lives. As
the experience in the Netherlands demonstrates,(69)
there is also little doubt that legalizing assisted suicide generates
strong pressures upon individuals and families to utilize that option,
and leads very quickly to coercion and involuntary euthanasia. The
so-called "slippery slope" already operates in regard to individuals
with disabilities and decisions to discontinue life-support systems
and "Do Not Resuscitate" orders; it would expand dramatically if
physician-assisted suicide were to become legal. Moreover, not only
would the lives of people with any disability deemed too difficult
to live with be at risk, but persons with disabilities who are poor
or members of racial minorities are likely to be in the most jeopardy
of all.
If assisted suicide were to be legalized, the most
dire ramifications for people with disabilities would ensue unless
stringent procedural prerequisites were established to prevent its
misuse, abuse, improper application, and creeping expansion. But,
to be effective, such procedural safeguards would necessarily sacrifice
individual autonomy to the supervision of medical and legal overlords
to an unacceptable degree -- the cure in this case being as bad
as the disease.
At its core, legalization of physician-assisted suicide
would represent a recognition by society that some particular individuals
have gotten all the substantial positive benefits they are going
to get from their lives, and, in the face of serious pain and suffering
they would endure if they continue to live, the few more hours or
days they can wring out of existence are not worth it; for such
individuals society would be saying that death is preferable to
life, and physicians would be empowered to help them terminate their
lives. For many people with disabilities, society has frequently
made it clear that it believes they would be better off dead, or
better that they had not been born. But it is more often the discrimination,
prejudice, and barriers that they encounter, and the restrictions
and lack of options that this society has imposed, rather than their
disabilities or their physical pain, that cause people with disabilities'
lives to be unsatisfactory and painful.
In proposals to legalize assisted suicide, proponents
are sometimes willing to agree that a decision to choose suicide
must be preceded by a full explanation of the programs, resources,
and options available to assist the patient if he or she does not
decide to pursue suicide.(70)
Many people with disabilities find this to be a very shallow promise
when they know that all too often the programs are too few, the
resources are too limited, and the options, very often, are nonexistent.
Society should not be ready to give up on the lives of its citizens
with disabilities until it has made real and persistent efforts
to give these citizens a fair and equal chance to achieve a meaningful
life.(71) Some of the energy
being devoted to promoting assisted suicide might be put to better
use in helping to improve the lives of people with disabilities.
For all of these reasons, the Council has decided
that at this time in the history of American society it opposes
the legalization of assisted suicide. Current evidence indicates
clearly that the interests of the few people who would benefit from
legalizing physician-assisted suicide are heavily outweighed by
the probability that any law, procedures, and standards that can
be imposed to regulate physician-assisted suicide will be misapplied
to unnecessarily end the lives of people with disabilities and entail
an intolerable degree of intervention by legal and medical officials
in such decisions. On balance, the current illegality of physician-assisted
suicide is preferable to the limited benefits to be gained by its
legalization. At least until such time as our society provides a
comprehensive, fully-funded, and operational system of assistive
living services for people with disabilities, this is the only position
that the National Council on Disability can, in good conscience,
support.
1
David Orentlicher, M.D., J.D., "The Legalization of Physician Assisted
Suicide," New England Journal of Medicine 335: 663, 665 (Aug.
29, 1996).
2 No. 95-1858, October
Term, 1996.
3 No. 96-110, October
Term, 1996.
4 497 U.S. 261 (1990).
5 No. 95-1858, October
Term, 1996.
6 Quill v. Vacco,
80 F.3d 716 (2d Cir. 1996).
7 Id. at
729.
8 No. 96-110, October
Term, 1996.
9 National Hospice
Association, "Hospice in Brief" at p. 1.
10 Id.
11 National Hospice
Association, "Hospice Fact Sheet" at p. 1 (Jan. 1, 1997).
12 Id. at
p. 2, citing a 1995 study by Lewin-VHI and a 1988 study conducted
by the Health Care Financing Administration (HCFA).
13 For a good overview
and additional information about hospice programs, see, e.g.,
Larry Beresford, The Hospice Handbook (1993).
14 Report of
the United Nations Expert Group Meeting on Barrier-Free Design,
26 Int. Rehab. Review 3 (1975).
15 State v. McAfee,
385 S.E.2d 651 (Ga. 1989).
16 McKay v. Bergstedt,
801 P.2d 617, 624-35 (Nev. 1990).
17 Id. at
637.
18 Id. at
628.
19 42 U.S.C. §12101(a)(2).
20 Id. §12101(a)(7).
21 Id. at
§12101(a)(2).
22 U.S. Commn on
Civil Rights, Accommodating the Spectrum of Individual Abilities
35-36 (1983).
23 See,
e.g., Accommodating the Spectrum of Individual Abilities
17-42, 159; Alexander v. Choate, 469 U.S. 287, 295-96, 286
(quoting 117 Cong. Rec. 45,974 (1971) (statement of Rep. Vanik);
118 Cong. Rec. 526 (1972) (statement of Sen. Percy)) (1985); S.
Rep. No. 116, 101st Cong., 1st Sess. 9 (1989); H.R. Rep. No. 485,
101st Cong., 2d Sess. pt. 2, at 32 (1990) (Education and Labor Committee)
[hereinafter Education & Labor Committee Report]; Task
Force on the Rights & Empowerment of Americans with Disabilities,
Equality for 43 Million Americans with Disabilities: A Moral and
Economic Imperative 8 (1990), quoted in Education
& Labor Committee Report, at 31-32; Louis Harris & Assocs.,
The ICD Survey of Disabled Americans: Bringing Disabled Americans
into the Mainstream 70, 75 (1986); Louis Harris & Assocs.,
The ICD Survey II: Employing Disabled Americans 12 (1987);
City of Cleburne v. Cleburne Living Center, 473 U.S. 432,
454 (Stevens, J., joined by Burger, C.J., concurring) (1985); id.
at 461, 462 (Marshall, J., joined by Brennan & Blackmun, JJ.,
concurring in part and dissenting in part).
24 See,
e.g., 29 U.S.C. §§ 701(a)&(b), 706(20), 706(30), 796a(1),
796d(a), 796c(a)(2); 42 U.S.C. §§ 8013(4), 12101(a)(8).
25 Accommodating
the Spectrum, supra n. 17, at 83-84, quoting Timothy
M. Cole, "What's New About Independent Living?," 60 Archives
Physical Med. & Rehabilitation 458-62 (1979)).
26 Center for Independent
Living, "Independent Living: The Right to Choose," in Disabled
People as Second-Class Citizens 248 (Eisenberg, Griggins, &
Duval eds., 1982) (quoted in Accommodating the Spectrum,
supra n. 17, at 84).
27 Gini Laurie,
"Independent Living Programs," 22 Rehabilitation Gazette
9-11 (1979) (quoted in Accommodating the Spectrum, supra
n. 17, at 83).
28 See,
e.g., Accommodating the Spectrum, supra n.
17, at 85, and authorities cited therein.
29 Gerben DeJong,
"Independent Living: From Social Movement to Analytic Paradigm,"
60 Archives Physical Med. & Rehabilitation 435-46 (1979)
(quoted in Accommodating the Spectrum, supra n. 17,
at 85).
30Id. §701(a)(3),
as amended by Pub. L. No. 102-569, tit. I, §101, 106 Stat.
4346 (1992).
31Id. §701(a)(6),
as amended by Pub. L. No. 102-569, tit. I, 101, 106 Stat.
4346 (1992).
32 U.S. Commn on
Civil Rights, Accommodating the Spectrum of Individual Abilities
26 (1983)
33 School Board
of Nassau County v. Arline, 480 U.S. 273, 284-85 (1987).
34 29 C.F.R. 406
(app. to pt. 1630) (commentary on §1630.2(l)) (1993) (can prove
discrimination "by demonstrating that the exclusion was caused by
one of the `common attitudinal barriers' toward individuals with
disabilities such as an employer's concern about productivity, safety,
insurance, liability, attendance, cost of accommodation and accessibility,
workers compensation costs, and acceptance by coworkers and customers");
Wooten v. Farmland Foods, 58 F.3d 382, 385 (8th Cir. 1995)
(the "regarded as" prong of the definition of disability encompasses
"archaic attitudes, erroneous perceptions, and myths"). Several
ADA decisions have recognized employers' "myths, fears and stereotypes
associated with disabilities." See, e.g., Freund v.
Lockheed Missiles and Space Co., 930 F.Supp. 613, 618 (S.D.Ga. 1996);
EEOC v. Texas Bus Lines, 923 F.Supp. 965, 975 (S.D.Tex. 1996); Howard
v. Navistar Internat'l Transp. Corp., 904 F.Supp. 922, 929-30 (E.D.Wis.
1995); Pritchard v. Southern Company Services, 1995 WL 338662, 4
AD Cases 465, 473 (N.D.Ala. 1995); Lussier v. Runyon, 1994 WL 129776,
3 AD Cases 223, 231 (D.Me. 1994); Scharff v. Frank, 791 F.Supp.
182, 187 (S.D.Oh. 1991) ("stereotypical treatment").
35 Robert L. Burgdorf
Jr., The Legal Rights of Handicapped Persons: Cases, Materials,
and Text 8 (1980).
36 Louis Harris
& Assocs., The ICD Survey of Disabled Americans: Bringing
Disabled Americans into the Mainstream 55 (1986).
37 Id. at
46, Table 19.
38 Id. at
42.
39 Id. at
42 (only 7% of persons with disabilities say that their disability
has a negative effect on their ability to, or interest in, having
children).
40 See,
e.g., J.R. Bach & M.C. Tilton, "Life Satisfaction and
Well Being Measures in Ventilator Assisted Individuals with Traumatic
Tetraplegia," 75 Arch. of Physical Med. & Rehab. 626
(1994).
41 Paul Steven
Miller, The Impact of Assisted Suicide on Persons with Disabilities
-- Is It A Right Without Freedom?, Issues in Law & Medicine
9:47, 54 (1993).
42 See,
e.g., Joanne Lynn, et al., Accurate Prognostications of
Death: Opportunities and Challenges for Clinicians, 163 W.J.Med.
250, 251 (1995).
43 Richard A. Posner,
Aging and Old Age 245 (1995).
44 Evan J. Kemp
Jr., "Could You Please Die Now?: Disabled People Like Me Have Good
Reason to Fear the Push for Assisted Suicide," The Washington
Post C1 (Jan. 5, 1997).
45 In re Quinlan,
355 A.2d 647 (N.J. 1976).
46 National Council
on Disability, Achieving Independence: The Challenge for the
21st Century 19 (1996).
47 See,
e.g., Gerben DeJong, Independent Living: From Social Movement
to Analytic Paradigm, 39, 50-51 (Robert P. Marinelli & Arthur
E. Dell Orto, eds., 1984).
48 Id. at
52-53.
49 Douglas Biklen,
The Myth of Clinical Judgment, Journal of Social Issues Vol.
44: 127, 128 (1988).
50 See,
e.g., Erving Goffman. Asylums: Essays on the Social Situation
of Mental Patients and Other Inmates. Garden City, N.J.: Anchor
Books; Thomas S. Szasz. 1961. The Myth of Mental Illness.
New York: Harper and Row; Thomas S. Szasz. 1970. The Manufacture
of Madness: A Comparative Study of the Inquisition and the Mental
Health Movement. New York: Dell; R.D. Laing. 1967. The Politics
of Experience. New York: Pantheon Press; Ethan Fromm. 1970.
The Crisis of Psychoanalysis. New York: Holt, Rinehart and
Winston; E. Fuller Torrey. 1975. The Death of Psychiatry.
New York: Penguin Books; John Gliedman & William Roth. 1980.
The Unexpected Minority: Handicapped Children in America.
New York: Harcourt Brace Jovanovich; Bonnie Milstein & Steven
Hitov. 1993. Housing and the ADA. In Lawrence O. Gostin & Henry
A. Beyer, eds. Implementing the Americans with Disabilities Act:
Rights and Responsibilities of All Americans, 137, 144-47. Baltimore,
MD: Paul H. Brookes Publishing Co.
51 Bonnie Milstein
& Steven Hitov. 1993. Housing and the ADA. In Lawrence O. Gostin
& Henry A. Beyer, eds. Implementing the Americans with Disabilities
Act: Rights and Responsibilities of All Americans, 137, 145-46.
Baltimore, MD: Paul H. Brookes Publishing Co.
52 DeJong, supra,
at 52.
53 Gerben DeJong
and Raymond Lifchez, Physical Disability and Public Policy, The
Scientific American 248: 41, 45 (1983).
54 David Orentlicher,
M.D., J.D., "The Legalization of Physician Assisted Suicide," New
England Journal of Medicine 335: 663, 664 (Aug. 29, 1996), citing
Y. Conwell & E.D. Caine, "Rational Suicide and the Right to
Die -- Reality and Myth," New England Journal of Medicine
325: 1100-03 (1991).
55 Paul Steven
Miller, "The Impact of Assisted Suicide on Persons with Disabilities
-- Is It A Right Without Freedom?," Issues in Law & Medicine
9:47, 58 (1993).
56 See,
e.g., J.R. Bach & M.C. Tilton, "Life Satisfaction and
Well Being Measures in Ventilator Assisted Individuals with Traumatic
Tetraplegia," 75 Arch. of Physical Med. & Rehab. 626
(1994); Ezekiel J. Emmanuel, Diane L. Fairclough, Elisabeth R. Daniel,
& Brian R. Clarridge, "Euthanasia: Physician Assisted Suicide:
Attitude and Experiences of Oncology Patients, Oncologists, and
the Public," Lancet 347: 1805-10 (1996).
57 Knight Ridder/Tribune,
"AMA to Teach Doctors to Aid the Dying," Chicago Tribune
p. 1A10 (Dec. 13, 1996); Brief for the United States as Amicus Curiae
Supporting Petitioners in Vacco v. Quill, No. 95-1858, October
Term, 1996 at p. 9 (referring to "health care system that often
undertreats patients' pain"); Brief for the United States as Amicus
Curiae Supporting Petitioners in State of Washington v. Glucksberg,
No. 96-110, October Term, 1996, at p. 19 ("inadequately treated
pain").
58 Knight Ridder/Tribune,
"AMA to Teach Doctors to Aid the Dying" Chicago Tribune p.
1A10 (Dec. 13, 1996).
59 Id.
60 AMA Council
on Ethical and Judicial Affairs, Code of Medical Ethics: Current
Opinions § 2.20 (1989), cited in Brief for the United
States as Amicus Curiae Supporting Petitioners in State of Washington
v. Glucksberg, No. 96-110, October Term, 1996, at p. 17.
61 In the related
context of discontinuance of life-prolonging treatment for patients
totally unable to make the decisions themselves, some courts have
required various procedural safeguards. See Superintendent
of Belchertown v. Saikewicz, 370 N.E.2d 417 (Mass. 1977) (required
approval in court proceeding with appointment of a guardian ad litem
to represent the interests of the patient); In re Quinlan, 355 A.2d
647 (N.J. 1976) (required combined agreement of the attending doctors,
the family, and hospital review panel).
62 Franklin G.
Miller, Timothy E. Quill, Howard Brody, John G. Fletcher, Lawrence
O. Gostin, & Diane E. Meier, "Regulating Physician Assisted
Death," The New England Journal of Medicine 331: 119-122
(July 14, 1994).
63 Report of
Chairman Charles T. Canady to the Subcommittee on the Constitution
of the Committee on the Judiciary of the House of Representatives
104 Cong., 2d Sess., p. 6 (September 1996). In 1986, the Royal Dutch
Medical Association published "Guidelines for Euthanasia," that
establish five criteria: "voluntariness," "a well considered request,"
"persistent desire for death," "unacceptable suffering," and "collegial
consultation." Id. at 8, quoting Jürgen Wöretshofer
& Matthias Borgers, "The Dutch Procedure for Mercy Killing and
Assisted Suicide by Physicians in a National and International Perspective,"
Maastricht Journal of European and Comparative Law 2:2, 7
(1996).
64 Report of
Chairman Charles T. Canady to the Subcommittee on the Constitution
of the Committee on the Judiciary of the House of Representatives
104 Cong., 2d Sess., p. 11 (September 1996).
65 Id. at
p. 1.
66 Brief for Amici
Curiae, Gay Men's Health Crisis et al. in Vacco v. Quill,
No. 95-1858, and State of Washington v. Glucksberg, No. 96-110,
October Term, 1996, at p. 15.
67 See,
e.g., Ezekiel J. Emmanuel, Diane L. Fairclough, Elisabeth
R. Daniel, & Brian R. Clarridge, "Euthanasia: Physician Assisted
Suicide: Attitude and Experiences of Oncology Patients, Oncologists,
and the Public," Lancet 347: 1805-10 (1996) (cancer patients
enduring pain not inclined to want euthanasia or assisted suicide).
68 One author has
observed that, as health cares costs increase, while funding for
health care and supportive programs is restricted, "assisted suicide
becomes a more cost-effective, expedient, and ultimately socially
acceptable option. Paul Steven Miller, "The Impact of Assisted Suicide
on Persons with Disabilities -- Is It A Right Without Freedom?,"
Issues in Law & Medicine 9:47, 54, 56 n. 33 (1993).
69 See generally
Report of Chairman Charles T. Canady to the Subcommittee on the
Constitution of the Committee on the Judiciary of the House of Representatives
104 Cong., 2d Sess., (September 1996).
70 See,
e.g., Brief for Amici Curiae, Gay Men's Health Crisis et
al. in Vacco v. Quill, No. 95-1858, and State of Washington
v. Glucksberg, No. 96-110, October Term, 1996, at p. 15.
71 For the Council's
proposals as to how America might better afford people with disabilities
opportunities for independence, dignity, self-sufficiency, and full
participation, see National Council on Disability, Achieving
Independence: The Challenge for the 21st Century (1996).
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