Are There Limits to Patient Autonomy? Elizabeth Heitman, PhD Vanderbilt University Medical Center

1. 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

2. Objectives • 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; • Examine the kinds of knowledge that shape patients’ capacity for autonomous choices in end-of-life care and how caregivers can enhance that knowledge.

3. 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

4. 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)

5. 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

6. 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

7. 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)

8. 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

9. 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.

10. 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.

11. 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.

12. The patient’s ability to give informed consent depends on: • The patient’ capacity for decision making; • The patient’s freedom of choice (freedom from coercion); • The physician’s adequate disclosure of information regarding the decision or choice to be made; • The patient’s sufficient comprehension of that information to make a reasoned decision or choice.

13. Legally adequate disclosure includes the patient’s comprehension of • The diagnosis for which intervention is proposed; • The nature and purpose of the intervention; • The intended benefits and anticipated risks of intervention; and • Alternatives to the proposed intervention, their intended benefits and anticipated risks, including the benefits and risks of doing nothing.

14. 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

15. 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.

16. 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.

17. 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

18. 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

19. 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

20. 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

21. 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.

22. 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