Dying Patients:
Who’s in Control?
James F. Childress
The President’s Commission for the Study of Ethical
Problems in Medicine and Biomedical and Behavioral
Research undertook a study of “Deciding to Forego Life-
Sustaining Treatment” because this issue seemed to the
commissioners “to involve some of the most important
and troubling ethical and legal questions in modern
medicine,” even though it was not part of the commis-
sion’s original legislative mandate. In submitting the
report to the President, Morris Abrams, the chairman of
the commission, noted: “Although our study has done
nothing to decrease our estimation of the importance of
this subject to physicians, patients, and their families, we
have concluded that the cases that involve true ethical
difficulties are many fewer than commonly believed and
that the perception of difficulties occurs primarily because
of misunderstandings of the dictates of law and ethics.”’
At least two major types of moral conflict may be ex-
perienced in foregoing life-sustaining treatment. On the
one hand, moral conflicts may be moral dilemmas-for
example, the individual’s (or institution’s) experience of
direct conflict between two (or more) principles, rules,
or obligations. It is important not to confuse such dilem-
mas with ethical uncertainties, which may be common
even if true ethical dilemmas are rare at least in this area.
On the other hand, there are moral conflicts between peo-
ple. Even if no person involved experiences a moral dilem-
ma, each one may have a different moral position, and
it may be impossible to realize all of them in the
circumstances.
Neither type of moral conflict surfaced in the case of
Betty Wright. There is no reported experience of moral
dilemmas; all the moral evidence seemed to point in one
direction. And the possible conflicts between different
parties never materialized, perhaps because of the clari-
ty, cogency, and power, based in part on medical exper-
tise, of the parties speaking for Betty. In what follows
I want to use this case as a point of departure for reflec-
ting on some issues in control of dying in the late 1980s,
227
recognizing that her case may be atypical in many ways.
Advance Directives to Family Members and
Professionals
If we start with a moral presumption that life-
sustaining treatment is in accord with a patient’s wishes
and interests, then we can consider conditions under
which this presumption can be rebutted. Certainly there
is a strong prima facie case for rebuttal, based on respect
for persons, when competent persons refuse life-sustain-
ing treatment. In this case Betty was able to participate
in many of the decisions as they evolved -though her own
role is not reported to have been very active as her death
approached-and she was also able to offer advance
directions to her daughter and son-in-law. She could
count on her family taking the steps necessary to imple-
ment those directives for her: radiation for relief of her
superior vena caval syndrome but then only symptomatic
treatment rather than curative treatment, including
chemotherapy. Furthermore, the family knew the
narrative context of her expressed preferences, and the
deep-rooted values that controlled those preferences, in-
cluding her interest in leaving a reasonable estate for her
children. The family clearly understood and concurred
in the wishes of this dying patient.
There are two major types of oral or written advance
directives: ( 1) specification of standards, and (2) designa-
tion of a decision-maker. In the former, the agent while
competent provides an advance directive about what
should be done if he or she becomes incompetent and can-
not make his or her own decisions about life-sustaining
treatment. In the latter, the agent designates a proxy or
surrogate to make decisions for him or her. Natural Death
Acts in several states authorize the designation of sur-
rogate decision-makers as well as the specification of stan-
dards, and state durable power of attorney statutes may
also be used to transfer the authority to make decisions
 Volume 17: 3 , Fall 1989
about life-sustaining treatment. Obviously, these two
types of advance directives may be-and often will be-
combined; for example, a person may designate a
decision-maker and instruct him or her about what should
be done.
The principle of respect for persons, which supports
respect for the autonomous patient’s choices, also sup-
ports reliance on the nonautonomous person’s prior
autonomous directives. The advance directive can also
be used to provide a more stable and reliable interpreta-
tion of the person’s preferences where the patient is doubt-
fully competent or his or her wishes are unclear. In one
case Mrs. Z , a 55-year old teacher of foreign languages,
was admitted to the ICU after developing aspiration
pneumonia, probably as a result of a diminished gag
reflex consequent upon twenty years of multiple sclerosis.
In order to prevent future occurrences, the staff con-
sidered over-sewing the patient’s epiglottis. A permanent
tracheostomy would have been required, and Mrs. Z
would have lost her laryngeal speech capability. The staff
considered the implications for Mrs. Z . On the one hand,
aspiration pneumonia could be fatal in the future. On the
other hand, her laryngeal speech was vitally important
to her because she was bed-ridden and depended on
speech for interaction with others as well as for tutoring
students at home. She indicated to the staff that she would
rather die than be unable to speak. However, she was
not clearly competent and the staff thought she had a mild
organic brain syndrome. Mrs. Z‘s sister brought in Mrs.
Z’s living will, which indicated that Mrs. Z did not want
to be kept alive artificially if she could not live a “useful
life.” Her sister interpreted the phrase “useful life” to in-
clude the ability to maintain meaningful relations with
others through verbal communication.* This case
involved a complex interaction between a doubtfully com-
petent patient’s current express wishes, her prior advance
directive that specified standards for decision-making,
and her next of kin who interpreted the written docu-
ment.
A focus on written advance directives, particularly to
specify standards, is understandable because of the decline
of trust as a result of several developments: Professionals’
concerns about legal liability, the decline of close, intimate
contact over time between professionals and their patients
(and their patients’ families), and the growth of large, im-
personal, and bureaucratically structured institutions of
care. However, written advance directives do not appear
to play a major role in decision-making about termina-
tion of life-sustaining treatment. (Some careful empirical
studies currently being conducted may modify this im-
pression.) A relative absence of signed “living wills” or
advance directives would not be surprising in view of the
small number of people who fill out wills of any kind or
sign cards to donate organs. However, the widespread
discussion of written advance directives, particularly in
228
the context of various dramatic cases from Quinlan to
the present, may have stimulated conversation with family
members and physicians. Again the parallel to donor
cards is striking: Rather than serving primarily as legally
binding documents, both may provide the occasion for
discussion with the family, and the family appears to play
the major role in the actual decision-making.
A good example of oral advance directives appears
in a case presented by Linda Emanuel, who argues for
comprehensive rather than limited directives - for exam-
ple, some are limited to orders not to r e ~ u s c i t a t eAn
.~
82-year-old man who had had both a colon and a blad-
der cancer resected fifteen years earlier refused a col-
onoscopy that had been scheduled as part of a routine
office checkup. He indicated that he understood the risks
and added, “I want to live; I am a fighter. But I am 82
years old; how much can I want? I don’t want to go
through that (colonoscopy) again.” This five-minute
discussion took place in the presence of one of his
daughters, who did not participate. During the next visit
the physician invited him to consider three scenarios in
order to determine what to do if he could not make his
own decisions later: being in a coma with a small chance
of recovery; being in a persistent vegetative state; and hav-
ing severe brain damage (e.g., extreme Alzheimer’s
disease). For each scenario he “was asked to say how he
would feel about cardiopulmonary resuscitation,
mechanical respiration, and life-sustaining nutrition with
a gastric tube.” H e stated that he would wish to decline
all three interventions for all three scenarios. He added
that for his current state he wished to avoid invasive
preventive procedures, but would accept curative and
some supportive forms of intervention, including surgery.
He wished to stop short of the suffering he had seen his
wife endure (when she had died a few years before). This
15-minute discussion was held in the presence of one of
his daughters. The physician did not suggest that the
patient make out a formal advance directive, but she did
record the discussions in the patient’s hospital records.
Such a formal document would have been important if
there had been “ambiguity, incomplete discussion, or lack
of consensus within the family.” Subsequent care followed
the lines indicated. Emanuel concludes: “This case sup-
ports the suppositions that prior comprehensive discus-
sions with primary care physicians can help the patient,
the primary care physician, the specialist, the hospital-
based physician, and the family. It lends support to the
use of scenarios with treatment options to structure
discussions. Decision making is potentially improved both
in quality and in efficiency by comprehensive advance care
discussions of this nature.” Of course, this kind of discus-
sion requires time and patience as well as imagination,
and it may occur more regularly (even if less systematic-
ally) in familial interactions than in health care inter-
actions. In the case of Betty, it appears to have occurred
 Law, Medicine & Health Care
in the context of the family more than in the context of
the physician-patient relationship.
Decision-Makers and Decision-Making
in the Absence of Advance Directives
Where there is an advance directive, proxy decision-
makers can act on the patient’s choices, as expressed when
he or she was competent. The surrogate decision-maker’s
action in accord with that directive is better viewed as
conveyed rather than substituted judgment, for it extends
the patient’s prior judgment into the current period of
incompetence. Where there is no advance directive, either
oral or written, it may still be possible to draw on the
patient’s prior explicit comments - for example, the com-
ments that had been made by Karen Ann Quinlan or Paul
Brophy -or on the values implicit in the patient’s lifestyle
or behavioral patterns. Appeal to those comments or
values is a form of substituted judgment for the
nonautonomous patient, and it is justified as respect for
the person and hidher prior autonomy. Where, however,
the patient was never autonomous or where the patient
was autonomous but left no reliable evidence of hislher
values or preferences, substituted judgment is a fiction
to be avoided. It makes more sense ethically to try to
make the decision in the patient’s best interests, that is,
according to the balance of probable benefits and burdens
to the patient from the perspective of the reasonable
person.
One important question concerns altruistic reasons
for foregoing life-sustaining treatment. Betty had express-
ed such reasons-she wanted to leave a reasonable estate
to her children. While it is appropriate to rely on a
patient’s autonomously expressed altruism -whether cur-
rently expressed or previously expressed in an advance
directive- it is inappropriate to attribute or impute
altruism to patients when making judgments based on
either substituted judgment or best interest^.^ However,
if there is no reasonable chance of benefit to the patient,
then decision-makers may appropriately consider the im-
pact on others, including emotional and financial impact.
That is, when life-sustaining treatment is appropriately
viewed as morally optional - in the sense that providing
it is a matter of moral indifference or is a matter of
supererogation rather than obligation because there is no
reasonable chance of success- then other factors may
legitimately enter.
Of course, some legitimate external limits on decision-
making may emerge even when prolongation of life is
desired by the patient and/or in accord with the patient’s
best interests.5 These external limits include the re-
quirements of research protocols- for example, a cancer
research protocol - and institutional rules for the alloca-
tion of scarce life-saving resources, for example, space
in intensive care units. Also professional and societal rules
l29
set external limits on the patient’s range of decision-
making about the mode of bringing about death, in par-
ticular, assisted suicide and active euthanasia, to which
I will return below.
Who should decide for the patient in the absence of
advance directives that specify standards and/or designate
decision-makers? Some state laws, including some
Natural Death Acts, allocate decisional authority to
various relatives, often spouse, then adult children, then
parents, etc. Apart from such legal developments, the
traditional assumption that the family has legal authori-
ty to decline life-sustaining treatment for one of its
members is not well-founded.6 However, ethically and
practically, the family should have presumptive authori-
ty because of presumed identification with the patient’s
interests and intimate knowledge of the formerly
autonomous patient’s preferences and values. The
category of “family” itself is not totally clear, and non-
traditional family structures need to be accommodated,
for example, in the case of long-term, stable relationships
between gay men who cannot legally marry. So far the
law has not provided an adequate f.ramework for the
resolution of conflicts between different parties who claim
to speak for the incompetent patient.
Physicians and other health care professionals ob-
viously play a major role in informing, interpreting, and
acting on the family’s wishes. However, their role is not
merely that of a technician; they remain moral agents who
have to decide whether to seek to disqualify presumptive
decision-makers under some circumstances. Efforts to dis-
qualify presumptive decision-makers may be justifiable
under several conditions, if these conditions are not cor-
rectable: Where the presumptive decision-makers are in-
competent to decide (and cannot be rendered competent),
where they are emotionally distraught (and cannot be
stabilized), where they are uninformed (and cannot be
informed), and where they are acting against the patient’s
known wishes or best interests. In the last situation, it
may be important for the health care professionals and
the institution to involve the ethics committee or other
institutional mechanism, but in the final analysis they may
have to appeal to the court to resolve the conflict.
I have focused on disqualifying decision-makers
because of the normal presumption in favor of familial
decision-makers over others, as in the case of Betty.
However, in some types of situation, it may be necessary
to qualify decision-makers because of other variables. For
example, if there are no available or willing family
members, it may be necessary to authorize others to play
the role of decision-maker.
Protection of the Consciences of Professionals
and Institutions
Betty and her family were fortunate in being able, for
 Volume 17: 3 , Fall 1989
various reasons, to choose and obtain a hospice nurse and
to persuade the physician(s) in the group to act on the
family’s recommendations. Serious moral conflicts arise
for institutions as well as for professionals when their
standards of decision-making about the termination of
life-sustaining treatment are in conflict with the decisions
made by patients or their surrogates. Natural Death Acts
sometimes exempt professionals from a duty to carry out
an individual’s advance directive to terminate life-
sustaining treatment. These clauses are intended to pro-
tect professionals’ autonomy by not forcing them to act
against their consciences. Analogous claims might be
made about an institution-e.g., one with a strong
religious tradition. Institutions are patterns of individual
acts, and it is important to protect the pluralism of values
in institutions, including hospitals and nursing homes,
as well as to encourage intermediate institutions between
the individual and the state. The state should have the
burden of proof to demonstrate that it cannot protect the
rights of patients which are at stake without infringing
upon either the professional’s or the institution’s
conscience.
The society might exempt professionals a n d / o r in-
stitutions from (or require them to perform) one or more
of the following acts: (1) inform patients and surrogates
about options, including informing them at the outset
about the institution’s restrictions on patient and proxy
choice and about other available institutions; (2)refer and
transfer patients to institutions that may act on the
patients’ or proxies’ decisions; ( 3 )carry out the express-
ed wishes of patients or thoses of their surrogate
decision-makers.
At the very least the society through the government
must require that institutions inform patients and their
proxies about the options at the outset and as the case
develops and refer and transfer patients. Since conscience
often requires that the agent, whether an individual or
institution, make efforts to prevent what is considered
wrong-doing by others, conflicts may still persist. But this
kind of compromise appears acceptable in view of the
threats to patients’ wishes and interests. In some cases,
these threats may be so substantial and the alternatives
for referral and transfer so limited that the professionals
and the institution will have to be ordered to act against
their consciences (e.g., in withdrawing artificial nutrition
and hydration). It will be easier to justify such a coer-
cion of conscience if indeed there are no alternatives, if
the action in question is more passive (i.e., letting hap-
pen) than active (i.e., actually doing), and if the action
need not be construed by the professional or the institu-
tion as killing (in contrast to letting die). It may be im-
portant, where possible, to allow the professional or the
institution to shift the causal responsibility to someone
else by, for example, disconnecting the respirator in some
cases.
230
Hastening Death, Letting Die, and Killing
The author insists that Betty’s case did not involve
“active euthanasia,” in contrast, for example, to the con-
troversial case of Debbie.7 Nevertheless, the agents did
“hasten” Betty’s death with the administration of mor-
phine and the withdrawal of other medications. There
is considerable debate about the classification of different
actions- for example, whether they are killing or letting
die. In addition, major conceptual confusions may make
it difficult to resolve such debates. At any rate, there are
some clear cases of killing and some clear cases of letting
die. The differences will not always be found in the agents’
intentions, and the moral differences are not, I believe,
intrinsic. Instead, there are important social ethical
reasons for retaining a distinction between killing and let-
ting die, for prohibiting killing, and for authorizing some
cases of letting die, when certain conditions are met
regarding the patient’s interests, wishes, etc. Those social
ethical reasons include the possibility and probability of
abuse. For these reasons the prohibition of killing should
continue in professional codes and in criminal laws.
The killing under consideration is mainly active
euthanasia. Suicide also involves killing, but it differs
from active euthanasia in its final agency. In suicide, even
assisted suicide, the final agent is the person whose death
is brought about; in active euthanasia, the final agent is
someone other than the one whose death is brought
about. Assisted suicide may involve such acts as providing
the means for committing suicide, offering instructions,
providing encouragement, and not calling the rescue
squad. Some ethicists bemoan the fact that some patients
may not be able to kill themselves, even with assistance,
and contend that it is unfair that they cannot exercise an
option available to others. However, even assisted suicide
should be approached with the utmost caution, and the
possibility of criminal prosecution and conviction sup-
ports this caution. It is even more important that active
euthanasia, where someone other than the patient does
the killing, remain illegal and subject to criminal sanc-
tion.* Of course, since this argument is based on conse-
quentialist grounds, it is subject to modification if the
evidence, for example, from the social experiment with
euthanasia in the Netherlands, indicates that major fears
are unfounded.
The author of the case uses the term “hastening” to
describe various agents’ relation to Betty’s death. For
some traditions, such “hastening” is acceptable under the
rule of double effect. Family members and professionals
have an obligation to relieve patients’ pain and suffering
and also an obligation not to kill patients. In order to
discharge their obligation to relieve patients’ pain and suf-
fering, they may have to increase the medication to a level
where it increases the probability that the patient will die
earlier, e.g., because of respiratory distress. Such actions
 Law, Medicine & Health Care
can be distinguished from killing the patient in order to
relieve pain and suffering.
Many of the most difficult current questions focus on
those who are not dying but are in a persistent vegetative
condition. Some ethicists contend that “letting die” can
be an appropriate description only when the patient is
irreversibly (and imminently) dying. For others, including
this author, letting die is a description that is applicable
to other cases, too, including those of allowing some
patients in a persistent vegetative state to die. The con-
troversy appears in part in the dramatic Chicago case in
which a man held hospital workers at bay while he
disconnected the life-support system from his comatose
son. In addition, letting die can encompass withholding
or withdrawing various life support systems, including
artificial nutrition and h y d r a t i ~ n . ~
Death can be a major harm to patients, depending
on their circumstances, as well as a major violation of
their rights. And it is obviously irreversible. Earlier the
major fear of patients and families was overtreatment.
Because of such cases as Karen Ann Quinlan, there was
a felt need to extricate patients from the clutches of
overwhelming medical technology. Now many fear
undertreatment in the face of efforts to contain costs. The
society will need to make sure that the mechanisms are
in place to prevent this threat to patients’ autonomous
choices and interests.
23 1
References
1. President’s Commission for the Study of Ethical Problems
in Medicine and Biomedical and Behavioral Research, Deciding
to Forego Life-Sustaining Treatment (Washington, D. C. :U.S.
Government Printing Office, March 1983). Emphasis added.
2. Stuart J. Eisendrath and Albert R . Jonsen, “The Living
Will: Help or Hindrance?” journal of the American Medical
Association, 1983, 249 (15):204-2058.
3. See Linda L. Emanuel, “Does the DNR Order Need
Life-Sustaining Intervention? Time for Comprehensive
Advance Directives,” American journa2 of Medicine, 1989,
86:87-90.
4. For a good discussion, see Norman I>. Cantor, Legal Fron-
tiers of Death and Dying (Bloomington, Ind.: Indiana Univer-
sity Press, 1987).
5. See Bettina Schoene-Seifert and James F. Childress, “How
Much Should the Cancer Patient Know and Decide?” CA-A
Cancer Journal, 1986, 36: 85-84.
6. See Judith Areen, “The Legal Status of Consent Obtained
from Families of Adult Patients to Withhold or Withdraw Treat-
ment,” Journal of the American Medical Association 1987,258:
229-234.
7. “It’s Over Debbie,” fournal of the American Medicd
Association 1988, 259: 272.
8. See Tom L. Beauchamp and James F. Childress, Prin-
ciples of Biomedical Ethics (third ed.) (New York: Oxford
University Press, 1989.)
9. Joanne Lynn and James F. Childlress, “Must patients
Always Be Given Food and Water?” Hustings Center Report
1983, 13: 17-21.