|
Patricia A. King and Leslie E. Wolf
excerpted from: King, Patricia A and Leslie E.
Wolf, Empowering and Protecting Patients: Lessons for Physician-assisted
Suicide from the African-American Experience , 82 Minnesota Law Review
1015-1043, 1015-1018 (1998)(101 Footnotes)
While we were watching round her bed,
She turned her eyes and looked away,
She saw what we couldn't see;
She saw Old Death. She saw Old Death.
Coming like a falling star.
But Death didn't frighten Sister Caroline;
He looked to her like a welcome friend.
And she whispered to us: I'm going home,
And she smiled and closed her eyes.
The increasing medicalization of death has led to widespread fear
that death is unnecessarily prolonged, painful, expensive, and without
dignity. This fear has given momentum to the desire of patients to have
more control over their dying and to the movement to legalize
physician-assisted suicide (PAS) and active voluntary euthanasia (AVE).
Others may have a different fear. They may be concerned that their lives
are not highly valued in this society and thus fear that they will not
have access to life-prolonging treatment or palliative care that, for
them, represents death with dignity. Moreover, many others may not share
either of these fears, considering death a "welcome friend" to
be greeted with family or, in any event, a process that is beyond their
control. Making sure that all of these voices are heard in the PAS
debate is a challenge.
While we share many of the concerns and values espoused by proponents
of PAS and AVE, we believe that existing prohibitions on PAS and AVE
should be maintained for the foreseeable future. Central to our argument
is the view that this society does not have a sufficient understanding
of how and why competent individuals are rendered vulnerable near the
end of life. We are especially concerned that inadequate attention has
been given to the sociohistorical and cultural contexts in which
competent individuals function. If we do not fully appreciate the
multiple ways in which an individual's autonomy and well-being can be
compromised, we cannot modify existing institutional arrangements and
practices in the health care system in ways that will empower and
protect all patients. It is important to empower patients so that their
decisions will be respected, while at the same time protecting them from
abuse and exploitation.
When the Supreme Court held unanimously in Washington v. Glucksberg
and Vacco v. Quill that state laws prohibiting assisted suicides did not
violate the Due Process Clause or the Equal Protection Clause, the
opinions of the Justices reflected concern that the interests of all
patients should be protected. For example, the majority opinion in
Glucksberg recognized that states have an interest "in protecting
vulnerable groups--including the poor, the elderly, and disabled
persons--from abuse, neglect, and mistakes." Quoting the work of
the New York State Task Force on Life and the Law (New York Task Force),
the majority opinion stated that "[t]he risk of harm is greatest
for the many individuals in our society whose autonomy and well- being
are already compromised by poverty, lack of access to good medical care,
advanced age or membership in a stigmatized social group."
Significantly, the opinion pointed out that "[t]he State's interest
[in protecting the interests of all patients] goes beyond protecting the
vulnerable from coercion; it extends to protecting disabled and
terminally ill people from prejudice, negative and inaccurate
stereotypes and 'societal indifference."'
As a result of the rulings in these two cases, the states will have
the responsibility for insuring that the interests of patients near the
end of life are not imperiled. Whether it is possible for the states to
make available at this time a compassionate option of last resort for
some competent, terminally ill patients, without, as a practical matter,
making it harder for other patients to exercise their preferences for
life prolonging treatment or palliative care, is a vexing public policy
matter. Since more attention has been paid to elaborating the principles
and rules that should govern practices at the end of life than to
ascertaining whether the principles or rules can be effectively
implemented in the context of actual decisionmaking, the states' task
will be complicated. As the New York Task Force has pointed out:
"For purposes of public debate, one can describe cases of assisted
suicide in which all recommended safeguards would be satisfied. But
positing an 'ideal' or 'good' case is not sufficient for public policy,
if it bears little relation to prevalent social and medical
practices." Moreover, the medical context is inextricably linked
with the social and economic inequities existing in the broader society.
Again, as the New York Task Force persuasively notes, "no matter
how carefully any guidelines are framed, assisted suicide and euthanasia
will be practiced through the prism of social inequality and bias that
characterizes the delivery of services in all segments of our society,
including health care."
This Article examines the African-American experience with medicine
for the insights that such scrutiny offers about the vulnerability of
competent individuals. We begin by offering reasons why such a
perspective is critical to development of policies about PAS and AVE and
end-of-life decisionmaking generally. It is important to reflect on the
African-American experience because it offers insights into the nature
of society's responsibilities for those who are competent but whose
autonomy and well-being may be compromised by historical, social, and
cultural forces at work in society itself. Thus, some individuals are in
need of protection because they have been rendered vulnerable by their
own society.
We turn next to a historical exploration of the relationship between
African- Americans and medicine, because, in order to understand the
black patient today, there must be some appreciation of the legacy that
is carried forward in memories of those who went before. This
examination makes clear that, as a historical matter, black lives have
not been as highly valued as white lives. We continue by documenting
existing disparities in health status, access to health care, and the
scope and quality of health care between blacks and whites. The
existence of these disparities perpetuates the view among African-
Americans that their lives are devalued. Significantly, these
disparities also indicate that blacks are severely disadvantaged in
negotiating all aspects of the health care system.
Initial efforts to understand the causes of these disparities suggest
that their existence may be due to limited access to health care,
cultural differences, differences in patient preferences, and
unconscious bias. This preliminary work offers insights about the role
of race, culture, and mistrust in the physician-patient relationship and
medicine generally. It suggests that African-Americans as a group have
little reason to believe that their preferences regarding end-of-life
decisions will be either understood or respected.
We conclude by indicating ways in which the African-American
experience with medicine might inform the states' consideration of PAS
and AVE. We hope that others will be motivated to offer similar analyses
of other groups for the implications that their history and culture have
for PAS.
[a1]. Carmack Waterhouse Professor of Law, Medicine, Ethics and
Public Policy, Georgetown University Law Center; J.D. 1969, Harvard Law
School; B.A. 1963, Wheaton College.
[d1]. Greenwall Fellow in Bioethics and Health Policy, Georgetown
University and Johns Hopkins University; A.B. 1988, Stanford University;
J.D. 1991, Harvard Law School; M.P.H. 1997, Johns Hopkins School of
Hygiene and Public Health |
