1. Guy G. Potter, PhD Department of Psychiatry Duke University Medical Center Presented to: Fayetteville VA Medical Center April 10, 2015

2. Disclosures  The presenter has no financial or other conflicts of interest to disclose  The presenter has no financial interests related to the information presented in this session.

3. Common-law principle of self- determination  Assumes individuals are autonomous  Guarantees individual's right to privacy and protection against the actions of others that may threaten bodily integrity  By extension, includes the right to exercise control over one's body  Right to accept or refuse medical treatment

4. Common-law principle of self- determination  Assumes individual competent to make choices, and accountability for choices made.  When individual not competent, procedures are necessary to balance patient self-determination versus patient health and well-being

5. Key procedures surrounding patient right of self-determination  Informed consent  Decision making capacity (DMC)  Competency  Guardianship

6. Informed Consent  Informed Consent is the legal recognition that each individual has the right to make decisions regarding his/her own healthcare  Capable patients are, by definition, able to give informed consent to treatment  Informed consent and decision making capacity are a linked process

7. Capacity vs. Competence  Capacity refers to an ability to decide  Capacity is context specific; varies based on complexity of decision  Competence refers to an ability to execute  e.g., incompetence to execute decision making more broadly

8. Capacity to do what?  Financial Affairs  Court of Protection  Power of Attorney/ Wills  Health and Personal Welfare e.g.  Consent to medical treatment  Where to live/care arrangements  Personal Conduct  who to associate with  marriage and sexual relations  Litigation process  Many decisions fall outside of the medical treatment process

9. Capacity vs. Competence  DMC = clinical judgment  DMC usually be assessed by physicians  Sometimes conducted or aided by psychologists  Competency = legal decision  Judge rules on competency and its binding parameters  DMC assessment is core aspect of the competency ruling

10. Guardianship  Basic civil rights are removed  Loss of function in multiple arenas - making very poor decisions– and lack of insight (appreciation) into deficits  No expectation to recover  Clear and convincing evidence  Beyond reasonable doubt  Considered as a last resort

11. Optimal Medical Decision-Making 1. Informed consent process = information sharing process  Full disclosure of relevant information – purpose, risks, benefits, alternatives  Questions must be elicited and answered  May require more than one discussion 2. Decision-Making Capacity Assessment (if needed)  Focused on the specific decision  Systematic and structured review 3. A well-informed choice is communicated  Genuine  Reflects personal values

12. Informed consent  Optimal medical decision making begins with adequate information  Capacity assessment cannot be determined until after patients are fully informed

13. Elements of Informed Consent A discussion between patient-physician: 1. Disclose information regarding condition 2. Outline treatments and alternatives 3. Discuss potential benefits & risks 4. Obtain autonomous consent & document  If DMC is questionable, assess & document

14. Assessing DMC: 4 key elements 1. Communicate a choice 2. Understand relevant information about proposed diagnostic tests or treatment 3. Appreciate their situation 4. Use reason to make decisions

15. Assessing DMC: 4 key elements 1. Communicate a choice  “Have you made a decision about treatment?”  “Have you decided where you want to go upon discharge?” Choice is the most basic and easily met element

16. Assessing DMC: 4 key elements 2. Understand relevant information about proposed diagnostic tests or treatment  “Tell me your understanding of your condition”  “What are the risks?”  “What are the benefits?”  “What are the alternatives?”

17. Assessing DMC: 4 key elements 3. Appreciate the consequences of their decision  “What to you think will happen if you agree to this treatment?”  What do you think will happen if you do not agree to this treatment?”

18. Assessing DMC: 4 key elements 4. Use reason to make decisions  “How did you reach your decision?”  “What were your reasons for making this decision?”  Goal: does the patient’s decision following logically from their understanding and appreciation? Reasoning is most difficult & subjective to assess

19. Assessing DMC: 4 key elements DMC can be assessed with an opinion and supporting evidence of these 4 elements: 1. Choice 2. Understanding 3. Appreciation (of consequences) 4. Reasoning (later we will discuss structured approaches to this process)

20. Misconceptions about DMC 1. DMC and competency are the same

21. Misconceptions about DMC 1. DMC and competency are the same  DMC is a medical decision  Competency is a legal decision

22. Misconceptions about DMC 1. DMC and competency are the same 2. Lack of DMC can be presumed when patients go against medical advice

23. Misconceptions about DMC 2. Lack of DMC can be presumed when patients go against medical advice  DMC doesn’t protect from all bad/unwise decisions  Individuals have unique definitions of risk and benefit  Individual value systems may compel choices

24. Misconceptions about DMC 1. DMC and competency are the same 2. Lack of DMC can be presumed when patients go against medical advice 3. There is no need to assess DMC capacity unless patients go against medical advice

25. Misconceptions about DMC 3. There is no need to assess DMC capacity unless patients go against medical advice This is illogical: capacity to consent and capacity to choose are equivalent. Should we worry about capacity to reject a shunt (prosthesis, medication, etc.), but not the capacity to accept it? Procedures can have adverse effects on quality of life

26. Misconceptions about DMC 1. DMC and competency are the same 2. Lack of DMC can be presumed when patients go against medical advice 3. There is no need to assess DMC capacity unless patients go against medical advice 4. DMC is an ‘all or nothing’ phenomenon

27. Misconceptions about DMC 4. DMC is an ‘all or nothing’ phenomenon  DMC exists on a continuum, and may be weighted by the risks of the treatment  DMC is specific to the treatment decision

28. Patient may have capacity to consent to a low-risk procedure in usual circumstances, but not have the capacity to consent to a high-risk protocol procedure, OR when confused or under duress. Standards for DMC assessment as a function of patient decision and risk/benefit

29. Misconceptions about DMC 1. DMC and competency are the same 2. Lack of DMC can be presumed when patients go against medical advice 3. There is no need to assess DMC capacity unless patients go against medical advice 4. DMC is an ‘all or nothing’ phenomenon 5. Cognitive impairment equals lack of DMC

30. Misconceptions about DMC 5. Cognitive impairment equals lack of DMC Multiple cognitive processes contribute to DMC, but in impairment and perseveration, depending on the specific issue  Can still evidence choices when impaired  Can understand medical instructions with memory aids/strategies

31. Note: many individuals with cognitive impairment still maintain overall DMC

32. DMC challenges in TBI  Related to “Deficit Syndromes”  Isolation, withdrawal, apathy, low motivation  Related to Cognitive Changes  Poor judgment, inability to comprehend consequences, poor decision making, perseveration, impaired memory and concentration, difficulty adjusting to the unexpected Note: Extra attention to rapport building may be useful to gaining trust and reducing refusals in this population

33. The Frontal Lobe Paradox Patient may perform well on cognitive testing & present well in the clinic  YET may continually make poor decisions in daily life Phinneas Gage

34. The Frontal Lobe Paradox  Patients with TBI-related impairments may nonetheless have adequate DMC to manage money, litigate, or refuse treatment despite being vulnerable, impulsive, and easily influenced  DMC adequacy ≠ wisdom  Can’t always protect patients from themselves; but may work with pt to put structures and safeguard in place

35. Misconceptions about DMC 6. Impaired DMC is a permanent condition

36. Misconceptions about DMC 6. Impaired DMC is a permanent condition Improvement in many conditions can lead to better DMC:  TBI recovery  Stroke recovery  Delirium  Mental illness Important to re-assess DMC regularly

37. Misconceptions about DMC 6. DMC is a permanent condition 7. Patients who have not been given relevant and consistent information about their treatment lack DMC

38. Misconceptions about DMC 7. Patients who have not been given relevant and consistent information about their treatment lack DMC  Patient cannot make adequate decisions without adequate information about condition, treatment options, risks, benefits  This underscores importance of informed consent dialogue with patients

39. Misconceptions about DMC 6. DMC is a permanent condition 7. Patients who have not been given relevant and consistent information about their treatment DMC 8. All patients with certain psychiatric disorders lack DMC

40. Misconceptions about DMC 8. All patients with certain psychiatric disorders lack DMC  As with cognitive impairment, choice, understanding, appreciation, and reason among individuals with psychiatric disorders vary by type and complexity of medical decision

41. Misconceptions about DMC 6. DMC is a permanent condition 7. Patients who have not been given relevant and consistent information about their treatment DMC 8. All patients with certain psychiatric disorders lack DMC 9. Patients who have been involuntarily committed lack DMC

42. Misconceptions about DMC 9. Patients who have been involuntarily committed lack DMC  Reasons for refusing commitment may not apply to many treatment decisions

43. Misconceptions about DMC 6. DMC is a permanent condition 7. Patients who have not been given relevant and consistent information about their treatment DMC 8. All patients with certain psychiatric disorders lack DMC 9. Patients who have been involuntarily committed lack DMC 10. Only mental health experts can assess DMC

44. Misconceptions about DMC 10. Only mental health experts can assess DMC  Assessment of DMC can be made by any fully trained clinician responsible for patient care; HOWEVER, consultation is helpful  Psychiatry  Clinical psychology  Neuropsychology  Speech  Occupational therapy  Physical therapy

45. Other approaches to DMC assessment  Research suggests many physicians feel unqualified to conduct DMC assessment; thus, researchers have developed a variety of instruments to assist in assessing DMC

47. Caveats to DMC instruments  Time  Cost  Lack of specificity to medical issue  Training  Benefits of instrument undermined if individual not trained in correct use or does not use instrument consistently  Even if not trained, may be a useful guide for interviewing

48. Potential consultations for DMC  Psychiatry  Mental health impairments, impact of symptoms on DMC elements  Clinical psychology/neuropsychology  Mental health and cognitive impairments, impact on DMC elements

49. Potential consultations for DMC  Speech therapy  Assess language/comprehension deficits  Occupational therapy  Safety/function in the home, falls risk, driving  Physical Therapy  Physical capabilities relative to medical condition and demands

50. Caveats to consultations  These do not constitute the DMC assessment should be used to:  Inform decision making  Support clinical observations/findings from assessing physician  Could also refute observations/findings, an indication that more thorough assessment may be needed to reconcile discrepant information

51. Examples of supportive information: neuropsychology  Impaired memory may provide neurological explanation for impaired understanding found in assessment  Impaired performance on executive function tests may provide neurological explanation for failure of insight (appreciation) or reasoning  Impaired visuospatial performance may support referral for driving evaluation in patient who want to drive AMA

52. Assessment – Medical Decisions Scenario: Patient refusing a medical procedure  Has there been a thorough informed consent process?  All risks, benefits, alternatives described?  Was lay language used?  Was pt given opportunity to ask questions?  How many times has the discussion occurred and in what context?

53. Assessment – Medical Decisions 1. Have patient describe his medical issue(s). – U 2. Have patient paraphrase what the recommended treatment is as well as the other options. – U 3. Have patient explain what the treatment involves and what it would mean for her. –U/A 4. Have patient express what he wants to do. – C 5. Have patient explain the reasons behind his/her decision.- A, R 6. Have patient explain the risks and benefits of his decision. – A, R

54. Assessment – Placement/AMA Scenario: Patient wants to return home  Has there been a thorough informed consent process?  All risks, benefits, alternatives described?  Lay language used?  Was pt given opportunity to ask questions?  How many times has the discussion occurred?

55. Assessment – Placement/AMA 1. Obtain funcational assessment (OT/PT; neuropsychological assessment as needed) 2. Review pt’s functional history 3. Have pt paraphrase what providers are concerned about and why they think placement should be considered - U 4. Have pt express whether he agrees with the concerns - U/A 5. Have pt state what he wants to do –C 6. Have pt explain risks and benefits of his decision –A, R 7. Have pt explain reasons behind his/her decision – A, R

56. When questioning capacity:  What is/are the focused area/s of concern?  Living situation, refusing a particular treatment  Is this lack of insight or poor judgment?  What is different about the pt now/from prior to admission that places him/her at greater risk?  What will be the treatment plan if the pt is found to lack capacity or have capacity?  Are there really no other options?  Think outside the box –(ways to get additional support at home, medical management vs. surgery)

57. Summary of DMC  DMC evaluates an individual’s comprehension and appreciation of a treatment choice based on a thorough informed consent discussion.  Understanding, appreciation, rational reasoning and choice

58. Summary of DMC  Does not include treatment plan recommendations, but can help the team formulate a treatment plan  Does not determine who surrogate should be if there is a lack of DMC; that is a legal question

59. Time for questions/discussion?