Ethics and End-of-Life Care Part 2: Autonomy and Futility Michael Wassenaar, PhD February 9, 2012.
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Transcript of Ethics and End-of-Life Care Part 2: Autonomy and Futility Michael Wassenaar, PhD February 9, 2012.
Ethics and End-of-Life Care Part 2: Autonomy and Futility
Michael Wassenaar, PhDFebruary 9, 2012
Review
Ethical goals
What should the goals of end-of-life care be?
How do we know these are the right goals?
“A decent or good death is one that is: free from avoidable distress and suffering for patients, families, and caregivers; in general accord with the patients’ and families’ wishes; and reasonably consistent with clinical, cultural and ethical standards. A bad death, in turn, is characterized by needless suffering, dishonoring of patient or family wishes or values, and a sense among participants or observers that norms of decency have been offended”
-- Institute of Medicine. Approaching Death: Improving Care at the End of Life. Washington: DC: National Academy Press, 1997.
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“[T]he duty to preserve life is not absolute, for we may reject life-prolonging procedures that are insufficiently beneficial or excessively burdensome.”
“The task of medicine is to care even when it cannot cure.”
“The free and informed judgment made by a competent adult patient concerning the use or withdrawal of life-sustaining procedures should always be respected and normally complied with, unless it is contrary to Catholic moral teaching.”
-- USCCB Ethical and Religious Directives, 2009
Four principles of bioethics Beneficence Promoting the well-being of the patient
Non-maleficence Protecting the patient from harm
Respect for autonomy Respect for a patient’s personal agency and dignity
Justice Fair distribution of resources and due process
Respect for autonomy
The word “autonomy” derives from the Greek words for self (autos) and governance, or law (nomos).
Autonomy: “self-rule that is free from both controlling interference by others and from limitations… that prevent meaningful choice.”
Beauchamp and Childress. Principles in Biomedical Ethics 2001, p. 58.
In practice
How does respect for autonomy translate into action? Decision making capacity Informed consent Surrogate decision making Advance Directives
Decision making capacityDoes the patient have the capacity to make self-
directed decisions?
Patient must be able to:
(1) understand the relevant information about proposed diagnostic tests or treatment
(2) appreciate their situation (including their current medical condition, treatment options, and consequences of their decision)
(3) use reason to make a decision
(4) communicate their choice
Informed consent
Informed consent is the process of ensuring the patient has the opportunity to make a free and meaningful choice.
Informed consent requires:
Agency: Capable of deciding
Liberty: Free from coercion/controlling influence
Information: Adequately informed
Surrogate decision makingSurrogate decision making: (1) Respects patient
autonomy, and (2) protects patients from harm.
Three standards apply to surrogate decisionsExpressed wishes
Substituted judgment
Best interests
Studies suggest patients want their surrogates to exercise discretion
NB: Surrogate decision making is stressful!
Advance directives
AD helps ensure that care reflects patient’s goals and preferences in the event that a patient is unable to make health care decisions.
Have ADs lived up to the hype?
Shift to preparation of surrogates
Gives families “permission” to withdraw
Medical futility“Do not seek to cure patients who are
overmastered by disease.”
- Hippocrates
But what does futility actually mean?
Physiological
Quantitative
Qualitative
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Futility disputes
Situations in which the patient or surrogate wants treatment, but the care team wants to stop.
Responses: Legal, or quasi-legal, process
(e.g, TADA, CCB)
Surrogate replacement
Communication
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Mrs. O
90 yr-old Hx of dementia, chronic
kidney disease, pneumonia Multiple hospitalizations Minimally interactive “downward trajectory” “live as long as possible”
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Thank you!