Encyclopedia of Sociology

DEATH AND DYING

attorney, or some other form of advance directive.
These are quasi-legal instruments, signed by the
patient, that instruct attending physicians (or sur-
rogates) as to the patient’s preferred treatment at
the end of life. Such directives are widely varied as
to their specificity and the conditions of applica-
tion, and it is currently impossible to know how
many and what types of directives have been exe-
cuted. There is, however, ample evidence that they
are in widespread use. Simple do-it-yourself forms
are available in stationery stores, and countless
specialized directives have been developed to cov-
er a wide variety of conditions and contingencies.
But both the effectiveness and the ethics of such
directives have become subject to wide debate:
When and under what conditions is the withdraw-
al of food or fluids legally and medically permissi-
ble? When may guardians or surrogates act for
incompetent patients? When does the constitu-
tional right to privacy prevail? Under what condi-
tions may the patient refuse treatment or take the
initiative and disconnect respirators or tubes? When
do oral directives, if ever, take precedence over
written ones? The answers to such questions tend
to be moot, although a broad legal doctrine has
been promulgated that bears on the availability
and use of advance directives. There must be
‘‘clear and convincing evidence’’ that the directive
accurately reflects the patient’s precise intentions—
or would in cases of incompetency. This legal
dictum, however, has proved to be both burden-
some and murky. The well-known Karen Anne
Quinlan case is illustrative. This young woman
‘‘existed’’ in a persistent vegetative state for ten
years while the legal process could determine wheth-
er Karen’s parents had met the ‘‘clear and convinc-
ing evidence’’ test (Karen’s parents had testified
that they knew their daughter well enough to be
certain that she would not wish to live in such
circumstances). In another widely cited case, Nan-
cy Cruzan ‘‘lived’’ in a similar state for seven years
while the intricacies of the law were being debated.
These and other such cases point to the need for
more useful and practical evidentiary tests. The
Hastings Center published a special supplement
titled ‘‘Advance Care Planning’’ in 1993.

In 1990, the Patient Self-Determination Act
(PSDA) raised a set of new questions. The PSDA
requires hospitals, nursing homes, and health
providers to inform patients of their right to pre-
pare a living will or some document of end-of-life

preferences. The significance of the PSDA was

underscored by an occasionally distributed joint

statement by the American Medical Association

and the Harvard Medical School:

Modern medicine can keep one alive long after

any reasonable prospect of mental, spiritual, or

emotional life is gone. The only way for a

person to retain autonomy in such a situation

is to record his or her preferences for medical

care before they are needed. (Published in The

Harvard Health Letter and elsewhere.)

The force of the PSDA, however, has not been

great and today it is generally believed that its

lasting importance will be found in its power to

enhance understanding of the still-developing and

changing doctor-patient relationship. Indeed, the

drama of that relationship has now been moved to

a larger stage that involves both assisted suicide

and the quality of dying.

Assisted Suicide. The role of law in cases

where patients or their surrogates seek to control

end-of-life decisions has always been debated. The

early cases in the 1950s and 1960s had revolved

around ‘‘informed consent.’’ This rule surfaced

when medical treatments resulted in unanticipated

negative consequences, and when it could be shown

that the patient had not been informed of the

risks. Not surprisingly, this rule led to more com-

plicated ones and, during the 1970s, the increas-

ing demand for patient control resulted in an

implied ‘‘right’’ to die by refusing treatment. Of

sociological interest, it was popular experience—

not statutory law or court decisions—that was

bringing about social change (see M. W. Riley 1978

for a theoretical statement). Nor was it long before

demands for the ‘‘right’’ to receive treatments

specifically designed to hasten death were serious-

ly being discussed and in some states actually

outlawed. As these events unfolded they have been

reported by major news services, and analyzed by

Hastings Center reports beginning in 1995.

In 1996 the U.S. Court of Appeals for the

Ninth Circuit struck down a Washington state

statute that had been passed specifically to deny

such a right. The presiding judge included this

noteworthy statement:

A competent, terminally ill adult, having lived

nearly the full measure of his life, has a strong

liberty interest in choosing a dignified and