Right to Self Determination and Mental Illness

1. Right to Self Determination and Mental Illness Julie Goldstein, MD Clinical Ethics and Palliative Medicine Advocate Illinois Masonic Medical Center November 5, 2010 Julie.Goldstein@advocatehealth.com

2. WARNING • This presentation may result in more questions than answers • The presenter does not take responsibility for the potential moral distress that may occur as a result (but she will hang around after for discussion….)

3. Objectives • Describe ethical principles that commonly influence advance care planning and other medical decision-making • Name areas of vulnerability for those with severe and chronic mental illness affecting decisional capacity • Identify common obstacles to success of advance care care planning and medical decision-making  by adults living with  severe and chronic mental illness

4. Foundation: Some Textbook Ethics Principles • Autonomy (right to self-determination): basis of informed decision-making • Beneficence (doing good) • Nonmaleficence (not doing harm) • Justice (equitable treatment)

5. Consent/Decision-Making: General Principles Patient has the right to be free of unpermitted touching. Patient has the right to consent to or decline recommended medical and surgical treatments. This right is upheld even when patient cannot speak for him/herself: When patient cannot speak for self, entitled to 3rd party advocate to be a substitute decision-maker (SDM).

6. Consent/Decision-Making: General Principles What ethical principles guide a substitute decision-maker? • “Substituted judgment” (but what about when the patient’s judgment is faulty?) • “Reasonable person” (but what about when forcing protracted compliance is untenable?)

7. Definition of an Ethical Dilemma • Situation involving two or more independently sound ethical principles • Impossible to comply with one of the principles without violating one or more of the others • No “right” answer; looking for the “least objectionable” approach(es) • Eg., Dignity Rights versus Obligation to Protect Vulnerable Patient

8. Case #1

9. Elements of Informed Decision-Making Process The Decider: • Understands situation requiring decision • Understands risks/burdens/benefits of all relevant treatment/diagnostic/disposition options, including option of not selecting an option • Manipulates information logically • Communicates a decision, which is (ideally) consistent over time

10. Definition of Decision-Making Capacity • If a patient can engage in an informed decision-making process for a given decision, the patient by definition possesses decisional capacity • It’s TASK-SPECIFIC !!

11. What does it mean to REALLY understand a situation and risks/burdens/benefits? • Could Depression shroud one’s assessment? i.e., Risks/Burdens not so burdensome, Benefits not so attractive • Beware the empathic “I wouldn’t want to live like that either” temptation; my judgment of patient’s situation PLUS patient’s nondecisional decision could lead to a decision that is not in patient’s actual best interest

12. Case #2 • Could this patient be allowed to complete a Durable Power of Attorney for Healthcare form? • Is there a sliding scale for DMC based on gravity or complexity of the specific task?

13. Nondecisional Assent/Dissent + Wingman • For a communicative but nondecisional person, although s/he cannot engage in informed decision-making, include him/her in the dialogue whenever possible • Particularly when a SDM (aka wingman) makes the formal consent/refusal we feel better, even if we believe it is not in the patient’s medical best interests. Why? • SDM will have to take into account the patient’s right to dignity, as well as the practical considerations

14. You Suspend Disbelief, I Suspend Belief: The “What if?” ConversationCase #3 .

15. Delusion as Metaphor?Case #4

16. “The A, B, C, and D of dignity- conserving care” • Attitude- attitude and disposition of the care provider has a profound influence on how patients perceive themselves to be seen • Behavior- whether you meet their eye, sit on a bed, or avert your gaze or are distracted. • Compassion- the ability to recognize the suffering of another and to attempt to be responsive to it. • Dialogue- certain phrases and ideas that can help dialogue to flow in a sympathetic manner Chochinov, Harvey , “Dignity and the essence of medicine: the A, B, C, and D of dignity conserving care” BMJ 2007;335:184-187

17. Conclusions • Failure to adhere to appropriate ethical principles for mentally ill patients can lead to inappropriate decisions • Decisional capacity is task-specific • Creativity in assessing ability of patient to engage in informed decision-making (eg., what if?; interpreting delusion as metaphor); dignity-preserving care • Importance of attempting to negotiate

18. Conclusions • Assent/dissent with wingman preserves dignity plus assures informed decision-making process (if pt.’s and wingman’s opinions are congruent) • If opinions not congruent, i.e., wingman says yes, patient says no: • Ultimate plan depends on: • Gravity of condition • Reversibility of condition • Treatment plan: One time or chronic, easy or burdensome • Practical aspects of forcing pt. against will • Balance of pt. dignity vs. pt. safety

19. Conclusions • In the end, patient’s dignity interests may actually trump his/her medical interests.