Autonomy - Oxford Medicine
Case 4-2: The Benefits and Harms of High-Dose Chemotherapy
Case 9-3: The ALS Patient: Does Voluntary Choice Justify Terminal Sedation?
Case 12-1: Mentally Ill or Just a Troublemaker? The Concept of Mental Illness
Case 12-2: The Case of the Hostile Homeless: Mental Illness and Autonomous Behavio
Case 12-5: Treating Pedophiles with Aversive Therapy
Case 13-1: H.P. Acthar Gel: Eliminating Expensive Therapies That Are Not Proven
Case 14-1: Insurance and the Invincible Young Man
Case 14-2: Ho
y Lo
y: Should Businesses Be Required to Include Contraceptives?
Case 14-6: Insuring Off-Label Pain Relief
The cases of Chapter 16
In the previous chapter we saw that in social ethics the principles of beneficence and nonmaleficence (which taken togethe
underpin the ethic maximizing aggregate total net benefits) may not be the only morally relevant considerations. The principle
of justice affirms that certain patterns of distribution of the good, such as distribution based on medical need, also may be
morally relevant. Justice as distribution is not the only moral consideration that can provide a check on the principles of
eneficence and nonmaleficence. In this and the following chapters we shall explore several other moral principles
(autonomy, veracity, fidelity, and avoidance of killing), principles that all, in one way or another, refer to right-making elements
or actions or practices that do not focus on maximizing the net good produced.
Since justice is concerned with the distribution of goods in morally prefe
ed patterns, it always involves more than one
potential beneficiary. The remaining principles that we have yet to explore (autonomy, veracity, fidelity, and avoidance of
killing) are relevant, however, even if there is only one person affected by our actions. Thus these principles are particularly
important in traditional clinical health care ethics in which the professional is thought of as acting on one and only one patient.
In fact, we increasingly recognize that even in these clinical situations many people are affected by the clinician’s actions.
There is not only one patient, but other patients whom the clinician could be treating. Family members of the patient, friends,
and citizens as well as fellow health professionals may be affected by each treatment decision.
Nevertheless, many ethical decisions in health care can be analyzed as if there is only one party who is principally affected.
When we contemplate violating a patient’s autonomy, lying to a patient,
eaking a promise to a patient (such as the promise
of confidentiality), or acting in a way that will kill a patient, it is the patient’s moral interests that primarily are affected. Othe
people’s interests are much more indirect. Therefore, while remembering the important ethical issues raised by the principle
of justice in the previous chapter, the cases in this and the following chapters in this part of the book will focus primarily on
the more individual ethical concerns. These begin with the moral principle of autonomy.
Autonomy is both a psychological and a moral term. Psychologically, autonomy is a term describing the mental state of
persons who are free to choose their own life plans and act on those plans substantially independent of internal or external
constraints. One leads the life of an autonomous person to the extent one is free to be “self-legislating.” Autonomy means
creating one’s own legislation. As such it should be apparent that being autonomous is always a matter of degree. No one is
“fully autonomous” in the sense of being totally free from internal and external constraints. Some people may be totally
lacking in autonomy; infants and the comatose are examples. Many people whom we call nonautonomous, however, possess
some limited capacity to make their own choices. Small children, the intellectually disabled or people who are mentally ill, and
the elderly who are senile all may be able to make limited choices based on their own beliefs and values and yet are hardly
autonomous enough to be called self-determining in any meaningful way.
Thus, being an autonomous person is a matter of degree. Those persons who have a sufficient degree of autonomy we treat
as being essentially self-determining; we call them “substantially autonomous persons.” For purposes of public policy, we
assume that persons below the age of majority, usually 18 years, unless proven otherwise, are lacking sufficient autonomy
for a range of publicly significant decisions. We admit that a particular 16-year-old may have the internal knowledge and
intellectual capacity and be sufficiently free from external constraints to be as autonomous as some adults. Occasionally
courts will recognize such minors as “mature” for purposes of making medical decisions on their own. But the working
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presumption is that minors lack competence to make many substantially autonomous decisions.
By contrast, those who have reached the age of majority are presumed to be substantially autonomous unless there is
adequate evidence to the contrary. One type of evidence comes from a judicial determination of lack of competence. There is
a striking problem with adult patients who are clearly unconscious. By law they are presumed competent to make their own
decisions and they have not been declared incompetent through a formal proceeding, such as in a court, but, nevertheless,
they are obviously not capable of making autonomous decisions. One approach is to require a clinician or a family membe
who believes another person is clearly incapacitated to take reasonable steps to inform the patient of that belief. Of course, if
the patient is unconscious, no such action is necessary. But if the patient is capable of disagreement and coherently
expresses that disagreement, then the patient should be presumed to be competent until adjudicated otherwise. If he or she
fails to disagree, then a presumption of lack of capacity to make substantially autonomous choices seems reasonable.
This does not mean, however, that a health professional is automatically free to do what seems reasonable to those who are
not substantially autonomous. In the case of children, we presume that only parents and those so designated by the courts
are free to act as su
ogate decision-makers. In the case of adults, even if the presumption of lack of autonomy is wa
anted,
it is still necessary to determine who is authorized to speak for the individual. The health professional—pharmacist,
physician, or other health worker—does not automatically have that authority. And even if a person is believed to be
substantially autonomous, it does not necessarily follow that he or she should be free to make all decisions about his or he
actions. If a person’s actions are likely to harm others, we routinely accept the idea that he or she can be restrained. This
might be supported on what can be called the harm-to-others principle. From the time of John Stuart Mill, this limit on action
has been well recognized, even among defenders of human liberty.
The principle of justice also might be a basis for constraining actions that affect others. That is, we may want to control
people because of the effect of their actions on the distribution of goods as well as because of the total amount of harms thei
actions will
ing to others. Still others believe that it is acceptable to constrain people who we believe are substantially
autonomous in order to produce a greater good for society. Constraining in order to produce good for others is, however,
more controversial than constraining to protect others from harm or to promote justice. Finally, some people believe it is
acceptable to constrain those who are substantially autonomous in order to produce good for those individuals themselves.
This is what is called paternalism.
If a person’s substantially autonomous actions have no appreciable effect on other people, it is an open question whether it is
ethically right for others to constrain his or her behavior—that is, to act paternalistically. Even if their free choices affect only
those making the choices, some people hold that, in some circumstances, it is morally appropriate to constrain those actions.
This is where autonomy surfaces as a moral principle. The moral principle of autonomy holds that an action or practice is
morally wrong insofar as it attempts to control the actions of substantially autonomous persons on the basis of a concern fo
their own welfare.
Classical Hippocratic ethics in the health care professions has been committed to the principle that the health care worke
should do whatever is necessary to benefit the patient. This has been understood to include violating the autonomy of the
patient. Pharmacists, in the name of Hippocratic paternalism, have refused to tell patients the names of drugs they are
taking, filled prescriptions for placebos, refused to dispense drugs believed dangerous, and engaged in all manner of
violations of the autonomous choices of patients. They have done so not out of a concern to protect the welfare of others o
to promote justice, but rather out of concern that the patient would hurt himself or herself. Classical Hippocratic professional
ethics contains no moral principle of autonomy.
By contrast, the moral principle of autonomy says that patients have a right to be self-determining insofar as their actions
affect only themselves. The principle of autonomy poses increasingly difficult moral problems for pharmacists, first, in
determining whether patients really are sufficiently autonomous so that the principle of respect for autonomy applies; second,
in deciding whether persons who are, in principle, sufficiently autonomous are being constrained by external forces that
control their choices; and finally, in deciding whether it is morally appropriate to ove
ide autonomy in order to protect the
patient’s welfare. The following cases confront these issues.
2
3
Determining Whether a Patient Is Autonomous
Some persons may lack the capacity to make many substantially autonomous decisions. They may, through age or
ain
pathology, lack the neurological capacity to process information necessary for making choices. They may suffer from severe
mental impairments, delusions, or e
ors in understanding.
In the easy cases this capacity is totally lacking. In these cases, such as in small children, we presume by public policy that
autonomy is absent and designate someone as a su
ogate, such as a parent or court-appointed guardian. In adults in whom
autonomy appears to be totally lacking, matters are more complex. First, the adult may have made choices while competent
that are thought to be still relevant. Second, public policy does not automatically designate any adults incompetent (as with
someone under the age of majority). It is here that we are still striving to develop legal and public policy mechanisms fo
transfe
ing decision-making authority. At present, no clear legal authority exists for health professionals, on their own, to
declare incompetency and assume the role of su
ogate decision-maker. Competence is a legal term