Chapter 1
Physicians, Patients, and Others:
Autonomy, Truth Telling, and
Confidentiality
Four questions
This chapter explores the relationship between patient autonomy and medical
paternalism with regard to four medical ethical questions:
•
To what extent is it morally necessary to secure a patient’s consent for medical
treatment?
•
Is it morally acceptable to deceive a patient if doing so is a means of protecting
or improving the patient’s health?
•
What information can medical professionally legitimately share with others in
caring for a patient? What are the moral limits of patient confidentiality?
•
Who has the moral right to make treatment decisions on behalf children?
Parents, medical professionals, the state?
Definitions of autonomy and
paternalism
We act autonomously when our actions are the outcome of our
deliberations and choices.
Autonomy is violated when:
• we are coerced or threatened
• our choices are based on misinformation supplied by others
• our competence to make sound judgments is impaired.
We value our autonomy so actions by others which violate it are
(usually) morally objectionable.
This is true where the violator tries to harm us or acts to promote his
interests in disregard of ours. (For a discussion of the harm principle,
see p. 903.)
Definitions of autonomy and
paternalism
• But what about instances where someone, either a
person or the state, violates our autonomy “for our
own good”? In these instances the violator is behaving
paternalistically.
• Is paternalism ever justified? Is it ever morally OK for
someone else to override our autonomy to protect or
promote our welfare?
• Children and drunkards are examples of an obvious,
yes, answer. Who would think to let a five year old to
play with a loaded pistol just because the child wanted
to? Who would let a friend “drink and drive?”
Definitions of autonomy and
paternalism
• Yet, where do we draw the line? A friend wants to
skydive and perhaps take his ten year old son with him.
It’s risky and he’s doing it just for fun. Should you try to
intervene? Should there be a law against it?
• These kinds of questions becomes especially acute in
medical contexts where our health or life may be at
stake. There can be a moral tension between
autonomy and paternalism in these cases. This chapter
illustrates and explores this tension, as well as the
relevance of the harm principle.
Immunizations and autism:
An example of autonomy and paternalism in
conflict
The tension between autonomy and paternalism is
illustrated by recent controversies surrounding the
suggestion that childhood vaccinations increase the
likelihood of autism in children who receive them.
Facts about autism
•
Autism today is considered as part of a range of developmental disabilities called
Autism spectrum disorders (ASDs).
•
ASDs include difficulties in language use and in communicating and interacting
with others. The behavioral symptoms typically appear before three.
•
The Centers for Disease Control estimates that an average of 1 out of every 110
children has autism.
•
Males are three to four times more likely than females to be autistic, affects all
races, in all parts of the world.
•
A sibling of someone with autism is 25 times more likely to be autistic than
someone in the general population
•
Facts about autism
• About 41% of children with ASD disorders have an
intellectual disability (IQ of 70 or lower).
• About 40% of children with ASD do not talk at all.
• Autism is a lifelong disorder that cannot be “cured.”
• Lifetime cost to care for an autistic person is $3.2 million.
• The causes of autism are unknown but it almost certainly
has a genetic component.
Reasons for suspecting an
immunization-autism link
• The incidence of autism seems to be going up.
• Autistic symptoms start showing up around the time vaccinations
are typically given.
• Vaccines, up until around 2001 were preserved by using Thimerosal,
which contains mercury a known neurotoxin.
• A study by pediatrician Andrew Wakefield and others, which
appeared in 1998 in the reputable medical journal The Lancet was
widely interpreted as showing that childhood vaccinations could
cause autism.
Reaction to claimed link
• Many parents and groups were persuaded by these arguments and
began arguing against legally mandatory immunization.
• Several reputable medical bodies examined the arguments of (a) –
(d) and found them without merit. They reaffirmed the standard
view that childhood vaccinations are low risk and should be
continued as a matter of law.
• Despite these findings a number of parents continue to remain
skeptical and in some cases refuse to immunize their children.
• How should we think about this continuing challenge to medical
authority?
Conflict between paternalism and
autonomy
• In the US and some other countries, the law requires
that children be immunized against a range of diseases.
This requirement represents state paternalism: parents
are legally obligated to have their children immunized
for the children’s own good (except in rare cases).
• Because children must be immunized by law, it is not
up to the parents to make the decision whether to
immunize or not. This fact represents a restriction on
parents’ autonomy to raise their children as they see
fit.
Support for paternalism
• In general we think that how children are to be
reared should be left up to the parents but in
certain cases where children’s welfare is at stake,
making immunization legally mandatory seems
justified.
• Most parents, most of the time, support and
abide by these requirements, that is, they accept
that restrictions on their autonomy is reasonable.
Support for paternalism
• This perspective was given Supreme Court sanction in
1905, in the case of Jacobson vs. Massachusetts.
• The Court addressed the issue of whether the state’s
requirement that everyone be vaccinated for smallpox
violated Jacobson’s “inherent right” to “care for his
own body and health in such way as seems to him
best.”
• The Court pointed out that, in general, the state has
the right to impose burdens and restraints on citizens
for the good of all.
Support for paternalism
• But, in the vaccination-autism controversy, some
parents are deeply suspicious of the medical
establishment’s claim that there is no link between
vaccination and autism.
• Some of them feel that there is a legitimate scientific
perspective which supports the existence of such a link.
• Why should parents have to accept the scientific views
of mainstream medical organizations instead of this
alternative analysis?
Support for paternalism
• The opinion in Jacobson vs. Massachusetts
addressed this issue as well.
• The Court said even if some scientists
questioned the efficacy of vaccination, the
legislature had the right to adopt and enforce
one of the competing scientific views.
Section 1: Consent and medical treatment
• One area where autonomy and paternalism can clash
concerns the conditions under which it is morally legitimate
for a medical professional to treat a patient.
• Of course, much of the time, patients come to doctors and
request treatment but in cases such as accident or medical
episodes patients may be brought to hospitals where,
health care professionals, acting on their mission to save
lives and improve health, treat a patient even if the patient
has not consented to the treatment.
• Is this morally legitimate?
Consent and medical treatment
• In the US, prior to the 1970s, the common attitude is that
paternalism is of course justified and the patient’s protests could
reasonably be ignored because it was for the patient’s own good.
• But that attitude has been changing partly because, in part, of high
profile cases such as that of Dax Cowart (discussed in a reading in
this section)
• Today, consent of the patient seems essential. There is widening
consensus that part of a medical professional’s responsibility
includes a serious respect for the patient’s autonomy, expressed, in
particular, by securing the patient’s consent for treatment.
Consent
But true consent is a complicated notion involving
at least the following:
(1) Being competent to understand what they are
told about their condition and capable of exercising
judgment;
(2) Being provided with relevant information about
their illness and the proposed treatment for it in an
understandable form and allowed the opportunity
to ask questions;
Consent
(3) given information about alternative
treatments, including no treatment at all;
(4) allowed the freedom to make a decision
about their treatment without coercion.
The reading in this section explore these
complications among other topics.
Reading: Paternalism and Partial Autonomy
Onora O’Neill
• O’Neill focuses on the consent aspect of
autonomy and argues that securing it requires
more than having a patient sign a consent
form, which may satisfy legal requirements
but which may not express the genuine
consent required by a serious respect for
patient autonomy.
Reading: Paternalism and Partial Autonomy
Onora O’Neill
• O’Neill argues that traditional views of autonomy in
medical ethics fail to recognize that most patients fall
short in varying degrees of the ideal rationality
assumed as the basis of genuinely informed consent.
• To ensure true consent, physicians must go out of their
way to ensure that patients understand the basics of
their diagnosis and the proposed treatment, then make
sure that they are secure enough to refuse the
treatment or insist that it be changed.
Reading: Paternalism
Gerald Dworkin
• Gerald Dworkin attempts to show that even if we place an
absolute value on individual choice, a variety of
paternalistic policies can still
• be justified.
•
• In consenting to a system of representative government,
we understand that it may act to safeguard our interests in
certain ways.
•
• But, Dworkin asks, what are the “kinds of conditions which
make it plausible to suppose that rational men could reach
agreement to limit their liberty even when other men’s
interests are not affected?”
Reading: Paternalism
Gerald Dworkin
• Dworkin suggests that such conditions are satisfied in cases
in which there is a “good” such as health involved—one
that everybody needs to pursue other goods.
• Rational people would agree that attaining such a good
should be promoted by the government even when
individuals don’t recognize it as a good at a particular time.
• There is a sense, Dworkin argues, in which we are not really
imposing such a good on people. What we are really saying
is that if everyone knew the facts and assessed them
properly, this is what they would choose.
Reading: Paternalism
Gerald Dworkin
• Also, we are sometimes influenced by immediate
alternatives that look more attractive, or we are careless or
depressed and so do not act for what we acknowledge as a
good.
• It is plausible, Dworkin suggests, that rational people would
grant to a legislature the right to impose such restrictions
on their conduct But the government has to demonstrate
the exact nature of the harmful effects to be avoided.
• Also, if there is an alternative way of accomplishing the end
without restricting liberty, then the society should adopt it.
Reading: Confronting Death: Who Chooses, Who
Controls? A Dialogue
Dax Cowart and Robert Burt
• Dax Cowart and Robert Burt agree that the principle of
autonomy gives competent patients the right to refuse or
discontinue medical treatment.
• Burt suggests, however, that the physician should stop
treatment only after a time during which the physician
explores the patient’s reasons for refusing it and perhaps
even argues with him to get him to set aside any
preconceptions that may be influencing his decision.
• Cowart does not reject Burt’s general views, but he is
inclined to see the need for physicians to accept patients’
decisions relatively quickly.
Reading: Confronting Death: Who Chooses, Who
Controls? A Dialogue
Dax Cowart and Robert Burt
• Mentioning his own experiences, Cowart stresses that
severe pain permits little delay and that patients should
not be forced to endure what they do not wish to
endure. That they may later be glad to be alive does not
justify violating their autonomy and forcing treatment on
them.
•
• For Cowart, respecting autonomy means recognizing that
a patient is free to make wrong choices as well as right
ones.
Section 2: Truth telling and deception
• What we know or think we know can affect our
attitudes and behavior. If we believe that we are poor
test takers we may decide against going to college.
• This link between belief and attitude and action is wellrecognized by health care providers.
• How a patient views his physical well-being and types
of medical treatment can influence his health and his
willingness to follow medical advice.
Section 2: Truth telling and deception
• For this reason, a physician may feel that he needs to
control what information a patient is or is not told about his
physical condition or about the nature of treatments for
the patient’s own good. This may involve outright lying or
deception of one sort or another.
• Adopting this paternalistic stance is a violation of the
patient’s autonomy because it prevents him from making a
fully informed decision about what he should do.
• Is such deception ever justified?
Reading: On Telling Patients the Truth
Mack Lipkin
• Mack Lipkin defends the paternalistic practice of
withholding information from patients because it is
practical impossible to tell them “the whole truth.”
• They usually simply do not possess enough
information about how their bodies work to
understand the nature of their disease, and their
understanding ofthe terms used by a physician is
likely to be quite different from the meanings
intended.
Reading: On Telling Patients the Truth
Mack Lipkin
• Besides, some patients do not wish to be told the
truth about their illness.
• Whether it is a matter of telling the truth or of
deceiving patients by giving them placebos, the
crucial question, according to Lipkin, is “whether the
deception was intended to benefit the patient or the
doctor.”
Reading: The End of Therapeutic Privilege?
Nicole Sirotin and Bernard Lo
• The authors endorse new AMA guidelines that
narrow a physician’s “therapeutic privilege” to
withhold medical information from a patient to
prevent potential harm.
• They maintain, however, that physicians need
additional guidance in specific cases and present two
cases to illustrate their claim. In one case, cancer is
unexpectedly discovered, and in the other, a
patient’s HIV status is revealed by an mistakenly
ordered test.
Reading: The End of Therapeutic Privilege?
Nicole Sirotin and Bernard Lo
• The authors suggest that in difficult cases, physicians would
find it useful to organize their approach around the
following questions:
(a) Whether to disclose information?
(b)Who should disclose it?
(c) Where and when to disclose it?
(d) What to say to the patient?
• These practical questions should allow physicians to build
on the trust and communication that are basic to the
doctor-patient relationship.
Section 3: Confidentiality
• The Hippocratic Oath famously says “Whatever I see or hear,
professionally or privately, which ought not be divulged, I will keep
it secret and tell no one”. The doctor must maintain patient
confidentiality.
• But why? Part of the answer is that physicians need to have
information of an intimate and highly personal sort to make
diagnoses and prescribe therapies. Patients might not be willing to
confide such information if they knew physicians will not keep it
confidential. Treatment might consequently suffer.
• Additionally, since psychological factors play a role in medical
therapy, the chances of success in medical treatment are improved
when patients can place trust and confidence in their physicians.
Section 3: Confidentiality
• But it has long been recognized that there are occasions
when it is legitimate to breach confidentiality.
• One recognized reason is that disclosing information about
a patient might be essential to protecting others from harm
(“the harm principle”).
• A familiar example is of an AIDS patient who has slept with
others. In that case, it becomes an obligation of the
physician to have the partners of the patient contacted to
inform them of their potential exposure to the disease.
Reading: Confidentiality in Medicine – A Decrepit
Concept
Mark Siegler
• Mark Siegler calls attention to the impossibility of
preserving the confidentiality traditionally associated
with the physician–patient relationship.
• In the modern hospital, a great many people have
legitimate access to a patient’s chart and so to all
medical, social, and financial information the patient
has provided.
Reading: Confidentiality in Medicine – A Decrepit
Concept
Mark Siegler
• Yet the loss of confidentiality is a threat to good medical care.
Confidentiality protects a patient at a time of vulnerability and
promotes the trust that is necessary for effective diagnosis
and treatment.
• Siegler concludes by suggesting some possible solutions for
preserving confidentiality while meeting the needs of others
to know certain things about the patient.
Reading: Supreme Court of California: Decision in the
Tarasoff Case
• This ruling, of particular concern to psychiatrists and
psychotherapists, declared that therapists at the
student health center of the University of California,
Berkeley, were negligent in their duty to warn Tatiana
Tarasoff that Prosenjit Poddar, one of their patients,
had threatened her life.
• Although the therapists reported the threat to the
police, Tarasoff herself was not warned, and she was
murdered by Poddar.
Reading: Supreme Court of California: Decision in the
Tarasoff Case
• The ruling and dissenting opinions in this case
address the issue of balancing the state’s
interest in protecting its citizens from injury
against the interest of patients and therapists
in preserving confidentiality.
Reading: Supreme Court of California: Decision in the
Tarasoff Case
More particularly:
• Does a therapist have a duty to warn at all?
• Should a patient be informed that not everything he tells
his therapist will be held in confidence?
• Is a therapist obliged to seek a court order committing a
patient involuntarily to an institution if the patient poses
a threat the therapist deems to be seriously motivated?
Reading: Supreme Court of California: Decision in the
Tarasoff Case
• The majority opinion argues that a therapist whose patient poses a serious
danger to someone has a legal obligation to use “reasonable care” to
protect the intended victim. This duty may include warning the possible
victim, even involuntarily institutionalizing the patient.
• The dissenting opinion, Justice William Clark contended that the law
should not interfere with the confidentiality between therapist and
because:
(1) Without the guarantee of confidentiality, those needing
treatment may not seek it;
(2) violence may increase, because those needing treatment were
deterred from getting it;
(3) therapists, to protect their interest, will seek more involuntary
commitments, thus violating the rights of their patients and
underminin gthe trust needed for effective treatment.
Section 4: Children and consent
• As noted earlier, consenting to treatment has been
recognized as a limit on what a physician can do, in
particular, in cases where a patient wishes to refuse a
treatment which the physician thinks is medically
justified to help the patient.
• But what about the case where the patient is a child?
The usual assumption is that a child is not competent
to make a decision about what’s needed to protect or
promote its welfare, so it cannot consent to what may
be necessary to for its health.
Section 4: Children and consent
• Instead, someone else (parents, another person, the
state) must serve as proxy and make that judgment
for the child. In fact, depending on the specifics, the
state may require that children receive standard
medical treatment in certain circumstances if parents
fail to act.
• When it comes to care of a child, most of the time
most parents or guardians will follow the
recommendation of medical professionals.
Section 4: Children and consent
• But what should be done if parents fail to do so
because, for example, the recommendations are
inconsistent with their religious convictions, which is
the case for Christian Scientists and Jehovah
Witnesses?
• Here we have a conflict between state paternalism
and religious freedom, one aspect of parental
autonomy.
Reading: Parental Refusals of Medical Treatment: The
Harm Principle as Threshold for State Intervention
Douglas S. Diekema
• The author argues that the “best interest” standard is not
adequate for making decisions about the welfare of a
child when state intervention is required because of
parental failure to see to a child’s welfare. Nor does the
best-interest standard reflect the standard used in
practice.
• The harm principle, Diekema claims, “provides a more
appropriate standard for court intervention.” He offers a
set of criteria for deciding when the state should
intervene on behalf of a child and cases to illustrating the
criteria.
Reading: Do Parents Have the Right to Refuse
Standard Treatment for Their Child with FavorablePrognosis Cancer?
Jeffrey D. Hord et al.
• The authors present the case of a 7-year-old boy with a
form of leukemia that responds well to standard
treatment and has an 85% chance of long-term survival.
• The boy’s leukemia went into remission after the first
round of chemotherapy, but his parents decided to
discontinue the chemotherapy in favor of a holistic
treatment that would not damage his immune system.
Reading: Do Parents Have the Right to Refuse
Standard Treatment for Their Child with FavorablePrognosis Cancer?
Jeffrey D. Hord et al.
• The hospital went to court seeking an order to continue the
child’s chemotherapy, but the judge ruled in favor of the
patents’ right to make medical decisions for their child.
• The authors outline the ethical principles of autonomy,
beneficence, non-maleficence, and justice as they relate to
the case.
• They emphasize the difficulty of finding a threshold of
therapeutic success at which treatment should be given to
children contrary to the wishes of their parents.
Reading: The Dilemma of Jehovah’s Witness Children
Who Need Blood to Survive
Anita Catlin
• Catlin presents the case of a child given a blood
transfusion even though his parents, both Jehovah’s
Witnesses, refused to consent to the procedure and tried
to prevent it on the grounds that transfusions are
forbidden by the Bible and if given would produce
spiritual harm to the child.
• Catlin believes it is unacceptable to try to convince
Jehovah’s Witness parents to give up their beliefs and
instead argues that alternative treatments to
transfusions should be seriously considered as a way of
accommodating the convictions involved.
Reading: Reply to Anita Catlin
Eugene Rosam
• Rosam points out that Jehovah’s Witness parents do not
believe that children should be allowed to die and are not
against medical treatment for their children, just not
treatment that involves blood transfusion.
• The author claims that we must recognize that a transfusion
has the potential to cause medical harm, not just medical
benefit.
Reading: Reply to Anita Catlin
Eugene Rosam
• Rosam notes that some laws and recent court decisions
do not require that a child receive the “best” treatment,
but only a treatment that is “adequate” or “reasonable.”
• Thus, if a treatment does not involve the use of blood,
even if some do not consider it the best treatment, there
are no grounds for interfering with parental decision
making.
• Rosam thinks it is unacceptable to try to convince
Jehovah’s Witness parents to give up their beliefs.