Autonomy and Informed Consent
1
Autonomy is self-governance
Part of respecting persons is respecting their
right of self-determination … the right to
determine what their lives mean by use of
their own judgment and decisions
2
Protecting someone’s ability to determine who
they are and what their life means requires
getting their consent for medical treatment
Meaningful consent requires that the patient be
properly informed about treatment
Being properly informed requires patient
competency
3
Competency requires understanding
But understanding what?
On p 32 the book begins its discussion of the
sort of understanding required for a patient to
be judged competent to give consent to a
medical treatment.
4
From the bottom of p 32 (only in 4th ed.):
Decision-making capacity* is the patient’s ability to make
choices that reflect an understanding and appreciation of
the nature and consequences of one’s actions and of
alternative actions, and to evaluate them in relation to a
person’s preferences and priorities. A patient’s decision
contrary to a physician’s recommendation does not in itself
indicate incapacity. –American Hospital Association
*Note that the AHA is working with its own
technical language of capacity rather than
competency ... It will not affect this discussion
5
Decision-making capacity is the patient’s ability to make
choices that reflect an understanding and appreciation of
the nature and consequences of one’s actions and of
alternative actions, and to evaluate them in relation to a
person’s preferences and priorities. A patient’s decision
contrary to a physician’s recommendation does not in itself
indicate incapacity. –American Hospital Association
Note also that choices are not evaluated strictly in
terms of consequences, but in terms of the
nature of the choice … a choice might violate a
life-long value, it might involve lying, it might be
the breaking of a promise.
6
Finally, note that the book fails to mention the
nature of the action and focuses instead on its
consequences: Pages 34-5 (32-3 4th ed.) Under…
Competence and Understanding:


2nd sentence,
1st sentence of paragraph 2
Classifying the Incompetent


1st sentence of paragraph 2
3rd sentence of paragraph 3
Read carefully
7
So, back to understanding … what must a patient
understand?
“the [nature! and] effects of the treatment on the patient’s health,
life, lifestyle, religious beliefs, values, family, friends, and society…”
–Ethics, p 34 (4th ed. 32), my brackets
P 35 (33 4th ed.) is an effort to show this sort of
understanding cannot be determined by classification
alone.
o
o
o
8
Some intellectually disabled people have the understanding
described above.
Some children do as well.
Some “pleasantly confused” people in institutions qualify as
competent.
Competency and Freedom
Competence requires not only the ability to
understand the consequences of one’s decisions,
but freedom from coercion and such undue
influence that would substantially diminish the
freedom of the patient – p36 (4th ed. 34)
Coercion = force or drugs equivalent to force
Undue influence = blackmail, bribery, extreme
pressure
9
Competency and Freedom (cont.)
Recall: Competence = the ability to
perform a certain task
The task at hand is to make a decision
that reflects your values and
assessment of likely outcomes




10
Do coercion and undue influence
really eliminate competence?
Do they invalidate consent?
Is there anything important missing in
the quotation on the previous slide?
Can freedom (free will) be overcome
by pressure?
Who is the Utilitarian in
this clip?
Information in Informed Consent:
4 competing rules to guide information sharing
1.
Patient preference rule
2.
Professional custom rule
3.
Prudent person rule
4.
Subjective substantial disclosure rule
11
1.
Patient preference rule = Tell the patient whatever the
patient wants to know
The book dislikes this rule because it:
a)
Invites wasting time answering too many questions
from certain patients
b)
Excuses patients from their right and duty to ask
questions and contribute to health decisions
An exception is acknowledged in cases where patient’s
are well known by their doctors, and can consent
based on their mutual understanding
12
Professional custom rule (also called the
professional community standard) = tell the
patient what is customarily told in similar
circumstances
The book dislikes this rule:
a)
What is customary might be bad
b)
A study showed there may be no custom and
the notion of decision based on custom
reduces to physicians doing what they want
2.
13
Prudent person rule (also called the
reasonable patient standard) = tell the
patient what a prudent, reasonable person
would need to know to refuse or accept
treatment
Read the 7 pieces of information a prudent
person will need at the bottom of p 38 (4th
ed. 39)
The book likes this approach, combined with the
following …
3.
14
Subjective substantial disclosure rule = tell the patient
what is important and relevant to them personally
(rather than an idealized prudent or reasonable
person) to make a decision about treatment, where
relevance is determined by whether it could make a
difference in the decision.
The book endorses 3 and 4 combined, first sharing
information a prudent person would want, then
adding anything knowledge of this particular patient
might suggest.
The book then complains that most hospital consent
forms are inadequate.
4.
15
Note that informing someone of a medical
treatment requires a good explanation,
which can be very difficult depending on the
treatment and the condition of the patient.
The overriding rule, though, is that the patient
understand, not that the information is
presented.
No understanding = no consent
16
17
The term paternalism comes
from Latin, pater, meaning
father.
‘Paternal’ suggests benevolent
action irrespective of or even
contrary to the wishes of the
beneficiary.
As such, Paternalism is always a
violation of patient
autonomy, though it may be
justified, depending on
circumstances.*
*Text is not clear if Paternalism is always a medical
benefit violating consent requirements … see slide
21, text pp. 41-2 (4th ed. 40-1)
18
What paternalism is not:

Stopping someone from harming others (the
book calls this “delegated police authority”)

Overriding a patient’s wishes in order to
benefit the hospital, doctor, nurse, etc.

Overriding the patient’s wishes when they
conflict with the health care provider’s values
19
Strong Paternalism (sometimes called extended
paternalism) = overriding of a competent
patient’s wishes for their own good
Weak Paternalism (sometimes called
cooperative paternalism) = overriding of an
incompetent or doubtfully competent
patient’s wishes for their own good
*Red text my additions to Garrett
20
Strong Paternalism = overriding of a
competent patient’s wishes for their
own good
Is Strong Paternalism ever justified?
For government:

To protect the rights of others

To protect an overriding state
interest (is this the basis for
prohibiting suicide?)
*Note that both of those reasons are for the good of others,
not the patient’s good, and so are not paternalistic
actions.
21
P 43 paragraph 1 (4th ed. 41, para 2):
The government, however, has not authorized health care
providers to use strong paternalism …
The next 2 paragraphs give

inability to know another’s values and

the possibility of multiple acceptable choices
as reasons to reject strong paternalism.
P 42 (4th ed. 40), third paragraph: Discussion of suicide
and any legal obligation to prevent it are put off.
22
Weak Paternalism = overriding an incompetent or
doubtfully competent patient’s wishes:
Courts have accepted weak paternalist excuses
when overriding the patient’s wishes is required
to relieve serious pain or suffering
Weak paternalism is also mitigated if exercised to
gain informed consent. The book calls such
treatment “in the service of autonomy.”
23
Restraints: restraints are justified
on weak paternalistic grounds
when patients are confused or
disoriented, posing a danger
to themselves. Their use
should include safeguards:

Periodic patient visits

Approval of supervisors and or
physicians

“Written justification”
24
The book’s trepidation regarding paternalism is
found on p 44 (4th ed. 42):
“…we insist that there is no general
authorization for even weak paternalism.
Each case needs to be studied, and
exceptions should be made carefully.”
25
The law has recognized paternalism under the
name Therapeutic Privilege.
Therapeutic Privilege = the privilege of
withholding information from the patient
when the physician believes that the
disclosure will have an adverse effect on the
patient’s condition or health.
26
3 conditions guide the use of therapeutic privilege:
1.
Its use must not be based on generalities, but on
the actual circumstances of the particular
patient
2.
The physician must have a founded belief, based
on intimate knowledge of the patient, that full
disclosure will have a significant adverse effect
on the patient
3.
Reasonable discretion must be used in the
manner and extent of the disclosure
27
The book dislikes this legal device; it notes 2
problems with it:

Research fails to confirm full disclosure
adversely effects patient condition or health

It is a denial of patient autonomy
28
P 45 (4th ed. 43), in the introductory paragraph
of the section on children and adolescents
the book tells us there is some problem with
consent regarding them, but does not specify
what it is.
The book mentions the law being a blend of
older theories that gave preference to the
rights of parents and newer theories that
focus on the child’s welfare and even more
recently, rights.
29
Incompetent patients require surrogates or
substitutes. Problems that attend surrogacy:

There is no authoritative guide to
determining who shall be “the” surrogate
when surrogacy is not specified by the
patient



30
What to do when parents disagree about care?
What to do when siblings disagree about care?
Are uncles closer than cousins? Grandparents?
Problems that attend surrogacy (cont.):

What happens when providers recognize a
conflict between a now incompetent
patient’s wishes and the decision of a
surrogate?
The books recommendation is twofold:

Do no harm (to the patient)

Be ready to seek court intervention
31
Which provider is obliged to provide the information?
The American Hospital’s Committee on Biomedical Ethics
identifies 3 obligations borne by hospitals:



Ensure informed consent is obtained …
Develop educational programs for informing patients…
Make certain patients are aware of their right to reject
treatments
Note that who at hospitals is specifically obliged is left open
32
33
Emergencies introduce exceptions to informed consent
requirements.
The authors commend following these criteria from
Rosoff (see references):

The patient must be incapable of giving consent
and no lawful surrogate is available to give consent

There is a danger to life or a danger of serious
impairment of health

Immediate treatment is necessary to avert these
dangers
The book amends their endorsement of the first
criterion by requiring the patient’s wishes be
unknown …
34
The authors give 2 reasons for their support of
“advanced directives” (knowing the patient’s
wishes):

Providers need informed consent to treat
patients (“to lay hands on” patients – the book
notes, top of p 47 (4th ed. 45), the legal notion
that “unwanted touch constitutes battery”)

The authors agree with the New Jersey Supreme
Court’s decision, in Jobes and related cases, that
self-determination is generally more important
than the state’s countervailing interests.
35
Author’s endorsement of the value of autonomy over
beneficence in section Exceptions in Nonemergencies:
When an incompetent person has no directive, no known wishes,
no surrogate, and life and health are not in immediate danger,
treatment cannot proceed. – paraphrase of section
Note the author’s claim that beneficence has been
supplanted by autonomy generally in health care; the
priestly model supplanted by a contractual, collegial, or
covenant model
36
The book recommends help from courts in the
absence of patient competency, proper
surrogates, or clear legislative direction, under
these conditions:





37
The incapacity is great and likely to be prolonged,
and there is no obvious surrogate
The capacity of the patient is questionable, and
the decision to be made significant
The views of the surrogate are strongly at variance
with the medical judgment or the patient’s known
views
The choice of the individual to serve as surrogate
is controversial, and all efforts to resolve the
matter at the hospital level have failed
Family members radically disagree about the
course of action in the case of a patient who lacks
adequate decision-making capacity
Be aware of the book’s misgivings about ceding
decision-making power to ethics committees
Since such committees are relatively new, there
are questions about the role they can or
should play, i.e., if laws were crafted with
only patients, surrogates, and physicians in
mind, there may be dangerous loopholes
38
The book mentions 3 main concerns:

How is the committee composed?
For example, is it weighted in favor
of physician’s interests over
patient’s rights?

What rules of participation are in
place?

What rules of disclosure are in
place?
39
The American Hospital Association’s Bill of
Patient Rights includes this:
4.
The patient has the right to refuse treatment
to the extent permitted by law and to be
informed of the medical consequences of his
actions
Note: The legal right to refuse treatment does
not imply an ethical right to refuse
40
Note that autonomy is a difficult value to
gauge at psychiatric facilities and nursing
homes.
Nursing homes will have special obligations of

Identifying their resident’s wishes as early
as possible

Establishing relations with surrogates

Informing residents about the living will
and durable power of attorney

Informing them about their rights to
refuse treatment

Attaching all documentation to resident’s
medical records
41