Transcript Are there limits to patient autonomy?

Challenges in Medicine, Law, and Ethics with Advance Directives
and DNR Orders (POST)
January 14, 2014
Are There Limits to Patient Autonomy?
Elizabeth Heitman, PhD
Vanderbilt University Medical Center
Center for Biomedical Ethics and Society
Objectives
1.
Define the concept of “autonomy” in contemporary
medical ethics, particularly related to informed consent
and the use of advance directives in end-of-life
decision making;
2.
Examine the kinds of knowledge that shape patients’
capacity for autonomous choices in end-of-life care
and how caregivers can enhance that knowledge.
Human Limits
•
All human activity has practical limits:
- Knowledge, physical ability, time, courage
•
Illness introduces additional, new practical limits
but also new knowledge, experience, insights
•
Human activity also has social and moral limits
that typically depend on these practical limits
--
- Focus on the practical
Definition of Autonomy
Self (autos) + rule, governance (nomos)
•
Self determination, exercise of free will,
individual choice
“No right is held more sacred or is more carefully
guarded by the common law than the right of every
individual to the possession and control of his own
person, free from all restraints or interference by others,
unless by clear and unquestionable authority of law.”
Union Pacific R. Co. vs. Botsford, 141 U.S. 250 (1891)
Conditions for Autonomy
Virtually all theories of autonomy identify
two essential conditions for an individual to
be autonomous:
•
Liberty or independence from controlling forces
•
Agency or capacity for intentional action
Principles of Biomedical Ethics, 5th ed.,
Tom L. Beauchamp & James F. Childress,
Oxford University Press, 2001, p. 58
Definition of Autonomy
“Autonomy is not an univocal concept in either
ordinary English or contemporary philosophy
and needs to be refined in light of particular
objectives.”
Principles of Biomedical Ethics, 5th ed.,
Tom L. Beauchamp & James F. Childress,
Oxford University Press, 2001, p. 58
Definition of Patient Autonomy
Self-determination and direction of the course of
one’s medical treatment, according to one’s
own values and preferences.
Every human being of adult years and sound mind has
a right to determine what shall be done with his own
body.
Schloendorff vs. Society of New York Hospital, 105 N.W. 92 (1914)
Primary Aspects of Autonomy
Autonomous person – focus on capacity for self
determination, moral agency
Autonomous choice – focus on independent,
informed decision making and action
Principles of Biomedical Ethics, 5th ed.,
Tom L. Beauchamp & James F. Childress,
Oxford University Press, 2001, p. 58
Context of Patient Autonomy
Patient autonomy typically has been defined in
terms of a legal and moral right to decide and to
make choices about one’s body, health, and
medical treatment in the social context of a
therapeutic relationship with physicians and
health care institutions who are also involved in
the decisions and subsequent action.
Autonomy and Informed Consent
Both law and ethics focus on the process and
content of informed consent as the means to
safeguard and promote patient autonomy
through a partnership that is also potentially an
adversarial relationship.
Open communication through informed
consent creates and sustains partnership and
prevents conflict.
Autonomy in the Ethical Ideal of
Informed Consent
Informed consent promotes patient autonomy
through shared decision making:
•
The physician presents reasonable medical options for
benefit, consistent with standards of good clinical
practice and professional judgment.
•
The informed patient chooses from among those
options, consistent with his or her personal values.
The patient’s ability to give informed
consent depends on:
1)
The patient’ capacity for decision making;
2)
The patient’s freedom of choice (freedom from
coercion);
3)
The physician’s adequate disclosure of
information regarding the decision or choice to
be made;
4)
The patient’s sufficient comprehension of that
information to make a reasoned decision or
choice.
Legally adequate disclosure includes
the patient’s comprehension of
1)
The diagnosis for which intervention is proposed;
2)
The nature and purpose of the intervention;
3)
The intended benefits and anticipated risks of
intervention; and
4)
Alternatives to the proposed intervention, their
intended benefits and anticipated risks, including
the benefits and risks of doing nothing.
The Limits of Patient Autonomy - #1
The traditional definition of informed consent limits
the patient’s options to those presented by the
physician as medically reasonable for the patient’s
circumstances and consistent with standards of
professional practice. Thus patients have
•
Extensive freedom to refuse intervention
•
Limited ability to demand interventions not
recommended or offered to them
Informed Consent and Autonomy in
End-of-Life Care in the 1970s-1980s
•
Was consent necessary for life-saving treatment?
•
Could a patient refuse intervention if refusal would lead
to death?
- if competent?
- if terminally ill?
US courts repeatedly affirmed the right of an
autonomous individual to refuse medical intervention,
even if refusal would lead to his or her death.
Extending Patients’ Autonomy into
the Uncertain Future
In the 1970s, early proponents of “living wills”
claimed that the right to informed consent extended
to decisions made by autonomous patients in the
present about possible treatment options in an
uncertain future.
“Advance directives” were developed so that
autonomous individuals (often not yet “patients”)
Could document consent or refusal for hypothetical
treatments in advance of need.
The Limits of Patient Autonomy - #2
What knowledge does the autonomous patient
need today to make autonomous decisions and
about choices about hypothetical decisions in the
uncertain future? Is the standard of disclosure for
informed consent possible?
1)
The diagnosis for which intervention is proposed;
2)
The nature and purpose of the intervention;
3)
Its intended benefits and anticipated risks
4)
Alternatives, their intended benefits and anticipated
risks
How do individuals (patients) develop
“treatment preferences” about EOL care?
•
•
•
Information from authoritative medical sources
•
Patient education materials
•
Authoritative internet sites
Information from unofficial sources
•
Popular media (both as “information” and stories)
•
Family and friends
Personal experience with others’ illness and death
•
Limited and inconsistent for most Americans
The Limits of Patient Autonomy - #3
What knowledge do autonomous individuals need
to make autonomous decisions and choices about
future medical intervention?
•
Factual (intellectual) medical knowledge
•
•
Likely diagnoses, interventions, effectiveness
Self knowledge
•
•
Personal values, preferences, fears, sources of meaning
Experiential knowledge and related insight
•
Coping with uncertainty, pain, suffering, limits, loss
•
Sources of resilience
Efforts to promote patients’ autonomy
procedurally through advance directives
need to include efforts to provide multifaceted knowledge for autonomous choice
about EOL care.
•
•
•
•
•
The real ways we die
The potential and limits of medical intervention
The real costs of EOL care (financial, personal)
Skills for facing uncertainty
The transformative experience of a “good” death
The Limits of Patient Autonomy - #4
Institutional policies and procedures for decision
making at the end of life EOL care that focus on
traditional disclosure of risks and benefits stress
generalized factual information, not evidence
based, knowledge in context.
Patients are unlikely to make autonomous EOL care
decisions with only this incomplete medical knowledge.
Gaps in experiential and self knowledge may lead
seemingly autonomous patients to make choices
inconsistent with their true values or preferences.
Do your institution’s policies support or
hinder patients’ autonomous decision
making and meaningful choices ?
•
CPR and DNR/ DNI orders (incl. in the OR)
•
Dialysis
•
Tubal feeding and hydration
•
Advance directives
•
Surrogate decision making