Truth Telling

1. Patient Autonomy and Truth Telling

2. Patient Autonomy

4. Main Theoretical Positions
• Consequentialist
• Morality of act depends entirely on results
• Also called “utilitarianism”
• Cost-benefit analysis and risk-benefit analysis are applied forms
• Kantian
• Opposite of consequentialism: results irrelevant
• Ethics based on absolute rules and rights
• Kant: treat people as ends, not mere means
• Influential in issues of informed consent
1. Vikki, 2004, J Gen Intern Med 25(7):741–5, 2. Norman 2012, Clinical Ethics in Anesthesiology
3. Kirlin., J Med Ethics 2007;33:11–14, 4. Autonomy, Chapter 2, Jones and Bartlett Publishers

5. Issue of Autonomy
• Caregivers sometimes confront conflict between two obligations
• Do what is best for your patient
• Respect wishes of competent patient.
• AUTONOMY: the claim of persons to make decisions or have their choices
respected when primarily their own interests are at stake
1. Vikki, 2004, J Gen Intern Med 25(7):741–5, 2. Norman 2012, Clinical Ethics in Anesthesiology
3. Kirlin., J Med Ethics 2007;33:11–14, 4. Autonomy, Chapter 2, Jones and Bartlett Publishers

6. Theories Applied to Autonomy
• Consequentialist
• Respect patient’s choice if and
only if it leads to the best
results
• Kantian: absolute rules or rights
• Always respect informed choice of
competent patient
• This implies obligation to provide
the necessary information or to do
what is needed to restore capacity
for autonomy, if possible
1. Vikki, 2004, J Gen Intern Med 25(7):741–5, 2. Norman 2012, Clinical Ethics in Anesthesiology
3. Kirlin., J Med Ethics 2007;33:11–14, 4. Autonomy, Chapter 2, Jones and Bartlett Publishers

7. Consequentialism and Nonconsequentialism
• Consequentialism
• The only thing that determines
the morality of an action are its
results (consequences)
Nonconsequentialism
Consequences are not the only
thing to consider
Consequences
one of several
things to
consider
Consequences
are irrelevant to
the morality of an
act
Prima facie
rules or prima
facie rights
(Non-absolute
rules or rights)
Absolute rules
or rights.
Kantian ethics
1. Vikki, 2004, J Gen Intern Med 25(7):741–5, 2. Norman 2012, Clinical Ethics in Anesthesiology
3. Kirlin., J Med Ethics 2007;33:11–14, 4. Autonomy, Chapter 2, Jones and Bartlett Publishers

8. Prima Facie Rules/Rights applied to accepting patient choice
• A prima facie right to have choice accepted and a prima facie duty of physicians?
• What could outweigh patient choice?
• Disastrous consequences?
• “Interests of the state in life (some legal decisions)
• Interests and needs of family?
• Contrary to the purpose and goals of medical profession”
• What are these?
• Can a patient request clearly conflict?
1. Vikki, 2004, J Gen Intern Med 25(7):741–5, 2. Norman 2012, Clinical Ethics in Anesthesiology
3. Kirlin., J Med Ethics 2007;33:11–14, 4. Autonomy, Chapter 2, Jones and Bartlett Publishers

9. Dax Case
• If you as physician judge treatment would benefit Dax, what ethical principle
would justify ignoring his wishes?
• Is it a justified principle?
• Must autonomy always mean respecting current wish of patient?
• Might one ever respect autonomy by looking to patient’s genuine choice, not
his/her current one?
• Might there be retroactive consent from the patient’s genuine self?
1. Vikki, 2004, J Gen Intern Med 25(7):741–5, 2. Norman 2012, Clinical Ethics in Anesthesiology
3. Kirlin., J Med Ethics 2007;33:11–14, 4. Autonomy, Chapter 2, Jones and Bartlett Publishers

10. Dax Case
Central ethical question: when, if ever, is it morally
appropriate to perform life-sustaining treatment against a
patient’s wishes?
1. Vikki, 2004, J Gen Intern Med 25(7):741–5, 2. Norman 2012, Clinical Ethics in Anesthesiology
3. Kirlin., J Med Ethics 2007;33:11–14, 4. Autonomy, Chapter 2, Jones and Bartlett Publishers

11. Which Changes Would be Relevant?
• Dax’s competence questionable
• Prognosis much clearer in one direction or another
• Pain could be relieved
• Mother agrees with Dax? Father (or spouse) alive and agreeing/disagreeing?
• What should be role of family with an adult, competent patient?
1. Vikki, 2004, J Gen Intern Med 25(7):741–5, 2. Norman 2012, Clinical Ethics in Anesthesiology
3. Kirlin., J Med Ethics 2007;33:11–14, 4. Autonomy, Chapter 2, Jones and Bartlett Publishers

12. Dax’s Case
Mrs. Cowart – Dax’s mother
• What principles and values was she using to guide her decision making?
• Is she acting as an appropriate surrogate decision maker for Dax?
1. Vikki, 2004, J Gen Intern Med 25(7):741–5, 2. Norman 2012, Clinical Ethics in Anesthesiology
3. Kirlin., J Med Ethics 2007;33:11–14, 4. Autonomy, Chapter 2, Jones and Bartlett Publishers

13. How would you want
your surrogate to make
health care decisions
for you?
On what basis?
Using what information?
Ask Yourself ...
1. Vikki, 2004, J Gen Intern Med 25(7):741–5, 2. Norman 2012, Clinical Ethics in Anesthesiology
3. Kirlin., J Med Ethics 2007;33:11–14, 4. Autonomy, Chapter 2, Jones and Bartlett Publishers

14. Legal Standards for
Surrogate Decision Making
• Best Interests:
• Doing what is in the person’s best interests when no previous expressions have been
made.
• Substituted Judgment:
• Making the choice the incapacitated person would make if he/she was able; acting on
knowledge of what that person would wish to have.
1. Vikki, 2004, J Gen Intern Med 25(7):741–5, 2. Norman 2012, Clinical Ethics in Anesthesiology
3. Kirlin., J Med Ethics 2007;33:11–14, 4. Autonomy, Chapter 2, Jones and Bartlett Publishers

15. Competence as an Ethical Issue
• Not a simple factual determination (although law looks at it that way)
• Two ethical obligations
• Respect autonomy of patients able to exercise it.
• Protect vulnerable patients from self-destructive choices
• Where on this continuum should social policy be?
1. Vikki, 2004, J Gen Intern Med 25(7):741–5, 2. Norman 2012, Clinical Ethics in Anesthesiology
3. Kirlin., J Med Ethics 2007;33:11–14, 4. Autonomy, Chapter 2, Jones and Bartlett Publishers

16. Models of the Physician Role
• Priestly
• Doctor makes the decisions
• Patient “follows doctor’s orders”
• Guidance-cooperation
• Collegial
• Engineering
• Doctors offers the medical facts
• Patient makes the decision
Autonomy
Paternalism
1. Vikki, 2004, J Gen Intern Med 25(7):741–5, 2. Norman 2012, Clinical Ethics in Anesthesiology
3. Kirlin., J Med Ethics 2007;33:11–14, 4. Autonomy, Chapter 2, Jones and Bartlett Publishers

17. Each Appropriate in Different Situations
• Priestly
• Emergencies
• Patient wishes doctor to make all decisions?
• Engineering ever appropriate?
• Which currently practiced?
• Which is ideal to strive for?
1. Vikki, 2004, J Gen Intern Med 25(7):741–5, 2. Norman 2012, Clinical Ethics in Anesthesiology
3. Kirlin., J Med Ethics 2007;33:11–14, 4. Autonomy, Chapter 2, Jones and Bartlett Publishers

18. Famous “4 Principles”
• Beneficence
• Nonmaleficence (“first, do no harm”)
• Justice
• Autonomy
1. Vikki, 2004, J Gen Intern Med 25(7):741–5, 2. Norman 2012, Clinical Ethics in Anesthesiology
3. Kirlin., J Med Ethics 2007;33:11–14, 4. Autonomy, Chapter 2, Jones and Bartlett Publishers

19. Non-Maleficence
We should avoid doing harming to others.
‘Primum non nocere’ – [trans. first (or above all) do no harm] – this would
make medicine a very difficult pursuit!
It is an extremely important principle to avoid harming others, but cannot take
priority and be expressed as an absolute principle. Must be considered in the
context of the obligation in medicine of the principle to do good for our
patients (beneficence), e.g cancer surgery.
Also balance required with the principles of autonomy and justice, e.g.
involuntary isolation.
1. Vikki, 2004, J Gen Intern Med 25(7):741–5, 2. Norman 2012, Clinical Ethics in Anesthesiology
3. Kirlin., J Med Ethics 2007;33:11–14, 4. Autonomy, Chapter 2, Jones and Bartlett Publishers

20. Beneficence
The obligation to do good / promote what is best for the patient.
Sometimes conflict may arise between doctor's judgement of what is in the
patient’s best interests and his desire to respect the patient’s different but
autonomous decision.
Must be balanced with the principles of respect for autonomy, non-
maleficence and justice (e.g.. rights and needs of others).
1. Vikki, 2004, J Gen Intern Med 25(7):741–5, 2. Norman 2012, Clinical Ethics in Anesthesiology
3. Kirlin., J Med Ethics 2007;33:11–14, 4. Autonomy, Chapter 2, Jones and Bartlett Publishers

21. Justice
• Allocation of medical resources must be fair and according to need
• Physicians should not make decisions regarding individuals based upon
societal needs
1. Vikki, 2004, J Gen Intern Med 25(7):741–5, 2. Norman 2012, Clinical Ethics in Anesthesiology
3. Kirlin., J Med Ethics 2007;33:11–14, 4. Autonomy, Chapter 2, Jones and Bartlett Publishers

22. Autonomy
• Refusal of recommended treatment
• Request for treatment not recommended?
• Informed consent to treatment
• Truthful and reasonably complete information
• Needed for consent or refusal and for information itself.
• One reason for coming to doctor is for information itself. (“Is this serious?”)
1. Vikki, 2004, J Gen Intern Med 25(7):741–5, 2. Norman 2012, Clinical Ethics in Anesthesiology
3. Kirlin., J Med Ethics 2007;33:11–14, 4. Autonomy, Chapter 2, Jones and Bartlett Publishers

23. Medical Paternalism
• Restricting patient’s freedom for patient’s own good. (“Doctor knows best”)
• Can be “weak” (to prevent harm) or “strong” (to benefit)
• Can be in clinical practice or in policy/law
• Is there enough FDA regulation of supplements?
• Can be pure or mixed
• Core ethical question: when, if ever, is medical paternalism justified?
1. Vikki, 2004, J Gen Intern Med 25(7):741–5, 2. Norman 2012, Clinical Ethics in Anesthesiology
3. Kirlin., J Med Ethics 2007;33:11–14, 4. Autonomy, Chapter 2, Jones and Bartlett Publishers

24. What ethical arguments for autonomy?
• Promotes trust
• Leads to greater cooperation from patient
• Terminal patient can make critical decisions
• Other patients will trust when you say condition is not serious
• Patients might not even come for treatment if they feared losing control over
decisions
• Doctors don’t know patients well enough to know what is good for them.
1. Vikki, 2004, J Gen Intern Med 25(7):741–5, 2. Norman 2012, Clinical Ethics in Anesthesiology
3. Kirlin., J Med Ethics 2007;33:11–14, 4. Autonomy, Chapter 2, Jones and Bartlett Publishers

25. Consequentialist Arguments for Autonomy
• Promotes trust
• Leads to greater cooperation from patient
• Terminal patient can make critical decisions
• Other patients will trust when you say condition is not serious
• Patients might not even come for treatment if they feared losing control over
decisions.
• Doctors don’t know patients well enough to know what is good for them.
1. Vikki, 2004, J Gen Intern Med 25(7):741–5, 2. Norman 2012, Clinical Ethics in Anesthesiology
3. Kirlin., J Med Ethics 2007;33:11–14, 4. Autonomy, Chapter 2, Jones and Bartlett Publishers

26. What if Consequences Better by Denying Autonomy?
• Is there a right to autonomy?
• Is respecting autonomy basic to respecting a person as a freely choosing
being?
1. Vikki, 2004, J Gen Intern Med 25(7):741–5, 2. Norman 2012, Clinical Ethics in Anesthesiology
3. Kirlin., J Med Ethics 2007;33:11–14, 4. Autonomy, Chapter 2, Jones and Bartlett Publishers

27. Argument for Paternalism
• Often consequentialist: prevents harm or benefits patient more.
• “Contract” argument: by coming to a physician one is accepting medical
expertise.
• Alternative view: one is only accepting that health is one of one’s values.
Maybe it is outweighed by others.
1. Vikki, 2004, J Gen Intern Med 25(7):741–5, 2. Norman 2012, Clinical Ethics in Anesthesiology
3. Kirlin., J Med Ethics 2007;33:11–14, 4. Autonomy, Chapter 2, Jones and Bartlett Publishers

28. What Is Informed Consent?
• Ethically, the obligation to respect patient autonomy.
• Often focuses on legal requirement for assent to a particular procedure
• Argument: should discuss long-scenarios, if relevant.
• Should we strategize about “least worst death? Margaret Battin
1. Vikki, 2004, J Gen Intern Med 25(7):741–5, 2. Norman 2012, Clinical Ethics in Anesthesiology
3. Kirlin., J Med Ethics 2007;33:11–14, 4. Autonomy, Chapter 2, Jones and Bartlett Publishers

29. Informed Consent as Process
• Not just disclosing information but being sure it is understood? How?
• In the law, discussion of
• Professional practice standard
• Reasonable person standard
• Should we move to individualized standard?
1. Vikki, 2004, J Gen Intern Med 25(7):741–5, 2. Norman 2012, Clinical Ethics in Anesthesiology
3. Kirlin., J Med Ethics 2007;33:11–14, 4. Autonomy, Chapter 2, Jones and Bartlett Publishers

30. Individualizing Informed Consent
• How do we know how much patient wants to know?
• Is transparency model on the right track?
• Could it serve as legal standard?
• Should patients who want more information have to pay more?
1. Vikki, 2004, J Gen Intern Med 25(7):741–5, 2. Norman 2012, Clinical Ethics in Anesthesiology
3. Kirlin., J Med Ethics 2007;33:11–14, 4. Autonomy, Chapter 2, Jones and Bartlett Publishers

31. Truth Telling

32. Opening Reflection
• Is honesty indeed the virtue we often claim it is?
• If so, why is lack of honesty as common as it is?
• Under what circumstances, if any, is deception justified?
• How can we enhance the levels of honesty in others and ourselves?
• How can we strive to enhance cultures of honesty, trust, and integrity in our
organizations and society?
1. Neelam, Punjani, J Clin Res Bioeth 2013, 4:4 2. Iqbal, Chagani, J Clin Res Bioeth 2014, 5:2, 3. Antony, Nursing Ethics 2004 11 (5)

33. Hippocratic Paternalism: Rationale for concealment
• Medicine had little to offer but hope and it was believed that “bad news”
destroyed hope --->concealment was in the patient’s best interests
• Since the physician and medicine’s reputation was at stake concealment was in the
physician and profession’s best interests
• Long-standing physician policy of concealment—sometimes motivated by self-
interest
• Long-standing institutional policy of concealment—often motivated by self-interest
1. Neelam, Punjani, J Clin Res Bioeth 2013, 4:4 2. Iqbal, Chagani, J Clin Res Bioeth 2014, 5:2, 3. Antony, Nursing Ethics 2004 11 (5)

34. Simple Autonomy Model
• Rationale for disclosure:
• Informed consent grounded in strong notion of autonomy
• Duty to tell linked to right to know: rights-based ethic prompted reversal of
the prior policy of concealment
• Positive and negative aspects of rights language
• Positive: stakes a claim and affords social protection
• Negative: invites adversarialism and minimalism; distorts the moral issue of
communication [”dumping” bad news versus communicating the truth..]
1. Neelam, Punjani, J Clin Res Bioeth 2013, 4:4 2. Iqbal, Chagani, J Clin Res Bioeth 2014, 5:2, 3. Antony, Nursing Ethics 2004 11 (5)

35. Expanded Autonomy Model Grounded in Rich Notion of
Beneficence
• Rationale for compassionate disclosure
• Commitment to authentic autonomy: patients receive the information and support
they need to make the decision that is right for them
• Corrects the problem of the non-interference model of autonomy which limits the
health care professional’s responsibilities to the negative duty not to interfere in the
choices patient’s make; imposes the positive duty to communicate the knowledge
patients need and to provide the support they need
1. Neelam, Punjani, J Clin Res Bioeth 2013, 4:4 2. Iqbal, Chagani, J Clin Res Bioeth 2014, 5:2, 3. Antony, Nursing Ethics 2004 11 (5)

36. Sissela Bok provides a two-pronged test to determine whether
deception is justified:
• First, would the deceived patient have agreed—prior to her or his mental
impairment—that such a deception is warranted?
• Second, could the deception survive public scrutiny, including that of
professional peers?
Bok, S. 1978. Lying: moral choice in public and private life. New York: Vintage Books

37. Respecting privacy & maintaining confidentiality
• The history & durability of these commitments
• Hippocratic Oath, AMA Principles of Medical Ethics, Nightingale Pledge, ANA Code for
Nurses
• –Why?
• Deeply personal, intimate nature of patient information
• Maintaining confidentiality = basic condition of trust
• Clinicians are stewards of patient information
• Expectation of confidentiality encourages patient disclosure
1. Neelam, Punjani, J Clin Res Bioeth 2013, 4:4 2. Iqbal, Chagani, J Clin Res Bioeth 2014, 5:2, 3. Antony, Nursing Ethics 2004 11 (5)

38. Clinician justifications for breaching confidentiality
• Tarasoff Case, 1974
• If you determine that warning to a 3rd party is essential, then warning must be given
• Two years later, 1976
• If warning is essential, you must not only give it, you must exercise professional
judgment as to what is required under the circumstances to prevent harm
1. Neelam, Punjani, J Clin Res Bioeth 2013, 4:4 2. Iqbal, Chagani, J Clin Res Bioeth 2014, 5:2, 3. Antony, Nursing Ethics 2004 11 (5)

39. Clinician justifications for breaching confidentiality
• Infectious diseases
• HIV infection
• Impaired drivers
• Injuries caused by weapons/crimes
• Child or elder abuse
• Domestic violence
1. Neelam, Punjani, J Clin Res Bioeth 2013, 4:4 2. Iqbal, Chagani, J Clin Res Bioeth 2014, 5:2, 3. Antony, Nursing Ethics 2004 11 (5)

40. Telling the truth
• The “checkered” history of this commitment
• AMA 1847 Code of Ethics and the doctrine of benevolent deception
• Oliver Wendell Holmes & “spinal irritation”
1. Neelam, Punjani, J Clin Res Bioeth 2013, 4:4 2. Iqbal, Chagani, J Clin Res Bioeth 2014, 5:2, 3. Antony, Nursing Ethics 2004 11 (5)

41. Telling the truth
• Survey data:
• 1953: 69% MDs favored NOT telling patient about cancer Dx
• 1961: 90% favored NOT telling
• 1979: 97% favored telling
• May 1989 survey of 409 MDs:
• Majority stated they would misrepresent test results to secure insurance
• Majority stated they would mislead wife of a male patient w/ STD
• One third would mislead family about cause of patient’s death if error were implicated in
cause
1. Neelam, Punjani, J Clin Res Bioeth 2013, 4:4 2. Iqbal, Chagani, J Clin Res Bioeth 2014, 5:2, 3. Antony, Nursing Ethics 2004 11 (5)

42. Telling the truth
• Rationales for lies, deceptions, misrepresentations or failures to disclose:
• Impossible to tell whole truth
• Patients don’t want to be told
• Lying, deceiving, misrepresenting, or not disclosing will prevent serious harm
• Telling the truth is not culturally appropriate
1. Neelam, Punjani, J Clin Res Bioeth 2013, 4:4 2. Iqbal, Chagani, J Clin Res Bioeth 2014, 5:2, 3. Antony, Nursing Ethics 2004 11 (5)

43. Telling the truth
• Ethical justifications
• Most patients want to know & must know in order to participate
• Disclosure, usually, has more beneficial than harmful consequences
• Lying & deception are morally wrong
• Telling the truth, avoiding deception & misrepresentation are all ways of respecting the
patient, honoring dignity & are reflective of virtues essential to the ethical practice of medicine
& nursing
1. Neelam, Punjani, J Clin Res Bioeth 2013, 4:4 2. Iqbal, Chagani, J Clin Res Bioeth 2014, 5:2, 3. Antony, Nursing Ethics 2004 11 (5)

44. Thank You