Are%20There%20Limits%20to%20Patient%20Autonomy?

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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

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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.

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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

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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)

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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

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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

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Definition of Patient Autonomy

• Self-determination and direction of the course of
• ones medical treatment, according to ones
• 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)

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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

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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 ones 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.

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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.

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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.

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The patients ability to give informed consent
depends on

1. The patient capacity for decision making
2. The patients freedom of choice (freedom from
   coercion)
3. The physicians adequate disclosure of
   information regarding the decision or choice to
   be made
4. The patients sufficient comprehension of that
   information to make a reasoned decision or choice.

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Legally adequate disclosure includes the
patients 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.

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The Limits of Patient Autonomy - 1

• The traditional definition of informed consent
  limits
• the patients options to those presented by the
• physician as medically reasonable for the
  patients
• 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

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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.

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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.

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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?
• The diagnosis for which intervention is proposed
• The nature and purpose of the intervention
• Its intended benefits and anticipated risks
• Alternatives, their intended benefits and
  anticipated risks

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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

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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

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Efforts to promote patients autonomy
procedurally through advance directives need to
include efforts to provide multi-faceted
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

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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.

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Do your institutions 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