1. October 29, 2011 New Mexico Chapter American College of Physicians Assessing Capacity

2. Disclosures None

3. Outline Case Presentation Define Capacity Assessment of Capacity Use of Instruments to Aid Assessment Dilemmas in Capacity Questions

4. Goals of This Talk Explain principles behind capacity assessment Operationalize assessment of capacity Review use of instruments to aid capacity assessment Review cases of questionable capacity

5. Recommended Reading Grisso T and Appelbaum PS: Assessing competence to consent to treatment. New York, Oxford University Press, 1997

6. My First Capacity Assessment 39 yo F lawyer with hx of breast cancer Presents to ED with fatigue, pallor, dizziness CBC: Hct 19, plts 15, VSS ED attending recommends transfusion Patient refuses when RNs arrive to consent for blood products, saying that she will go see her oncologist in the morning, and that she doesnt like the tone he took and demands to leave AMA Attempts to further discuss risks and benefits make her more angry, yelling and screaming that her rights are being trampled and shes going to sue the pants off this place. Attending calls security, they and the patient are standing in the hallway glaring at each other as psychiatry arrives Capacity to leave AMA?

7. Definition of Capacity Capacity = Ability to take part in informed consent for treatment and make a decision Informed Consent: The process in which one person (patient) agrees to allow another person (treater) to do something to, or for, him or her. Simple consent: Patient explicitly or implicitly agrees to treatment with little to no explanation. Informed consent >> Simple consent Shift toward autonomy, civil liberties Lack of informed consent = Battery* * Exceptions in which a person may be treated without their or a surrogate decision makers informed consent: ie. emergencies, advance directive

8. Definition of Capacity Origins in Enlightenment philosophy John Locke (1632-1704): Governmental legitimacy stems from the free choice of persons to aggregate in a common system John Stuart Mill (1806-1873): Neither government nor individuals have the right to infringe the liberty of citizens without their consent, even for the citizens own benefit… Slater v. Baker and Stapleton, 1767 …it appears from the evidence of the surgeons that it was improper to undertake a procedure involving refracturing a bone that was healing poorly without consent…

9. Definition of Capacity Schloendorff decision, 1914 Every human being of adult years and sound mind has a right to determine what shall be done with his body. Salgo v. Stanford University, 1957 A physician violates his duty to his patient and subjects himself to liability if he withholds any facts which are necessary to form the basis of an intelligent consent by the patient to the proposed treatment. Natanson v. Kline, 1960 Consent is valid only if it is an intelligent consent that represents an informed exercise of choice. Patients must be told about the nature and purpose of the proposed treatment, its potential benefits and risks, and the alternative approaches available, along with their benefits risks. Professional standard of disclosure vs. patient materiality standard

10. Definition of Capacity Difference between capacity and competency Capacity = Ability to take part in informed consent for treatment and make a decision Competency = Legal status granting rights to make decisions in health care, finances, contracts. Only a court can declare a person incompetent. A court may use a clinicians assessment of a patients decision-making capacities to make a judicial judgment on competency This distinction blurs at the bedside, as clinicians determination of incapacity carries the same consequence as courts finding of incompetence

11. Studies of Capacity Many things can cause loss of capacity to make a decision Prevalence in acutely medically ill: up to 35% Clinicians likely underestimate incapacity 28% of medically ill age > 65 not identified to have incapacity 35% of nursing home residents found to lack capacity were not identified as such by their clinicians Clinicians tend to be insensitive assessors of capacity (detect only 42% of incapacitated patients) But when they determine incapacity, they are usually correct Sessums, L. L. et al. JAMA 2011;306:420-427

12. Table 1. Prevalence of Incapacity in Select Populations. Sessums, L. L. et al. JAMA 2011;306:420-427 Copyright restrictions may apply.

13. NM Uniform Health Care Decisions Act Decisional Capacity: Ability to understand and appreciate the nature and consequences of proposed health care, including its significant benefits, risks and alternatives to proposed health care and to make and communicate an informed health-care decision. Two health care professionals to assess, one of which is primary physician If mental health issues affecting capacity, mental health professional may be involved

14. NM Uniform Health Care Decisions Act Promptly record determination of capacity Patient may challenge this determination, requiring court order Surrogate decision maker appointed: Spouse partner child parent sibling GP Majority rules

15. Definition of Capacity A person may be found by a clinician to have: Specific incapacities (for specific decisions) Global incapacity (for any decision) Be careful what you ask for!! 75 yo F, lives alone, with dementia, delirium, refusing IV antibiotics for UTI Team found her to lack decisional capacity (globally) Social work looking for surrogate decision maker, no family found but close friend willing to act, patient says thats ok But wasnt she declared globally incapacitated? Sits on medical floor for 3 months awaiting APS guardianship Bottom line: dont take away global capacity unless absolutely certain it applies to ALL decisions!

16. How to Assess Capacity 1) Do you HAVE to assess capacity? 2) What is the specific decision to be made that requires a capacity assessment? 3) Where on the sliding scale of sophistication does this decision lie? 4) Does the patient meet the 4 crucial prongs? 5) Decision made--What now?

17. 1) Do you HAVE to assess capacity? Avoid assessing capacity if you dont have to Do they have a guardian/durable power of attorney for medical decisions? Is there an advance directive in place? Was capacity already assessed? Does it not matter (or change management) because alternatives to treatment are Talk to the patient Reassure Explain the plan of care Buy time Ask family/friends to help Dont worry alone

18. When to NOT Assess Capacity Treatment may proceed without patients informed consent: In emergencies (only until stable!) If competent waiver was given If advanced directive is already established If incompetency is already established (need surrogates consent!) Under therapeutic privilege (need surrogates consent--risky!)

19. 1) Do you HAVE to assess capacity? 55 yo M with hx of lower extremity cellulitis, admitted for recurrent infection Wants to leave AMA on Day 2 while receiving IV antibiotics Says the nurses wouldnt let him go outside to smoke Refuses to talk to anyone if hes going to be treated this way Consultant contacts team, who agrees it is relatively safe to let patient off ward to smoke Patient agrees to stay

20. 1) Do you HAVE to assess capacity? 40 yo M s/p MVA, orthopedic injuries Pt refuses physical therapy Team requests consult for capacity to refuse physical therapy You cant force someone to engage in PT Even if patient lacked capacity to refuse, he cannot be forced to engage in PT Knowing what the alternative to treatments are and their associated risks and benefits if chosen is key Forcing a resistant patient to be treated may involve restraints, sedation, injectionsall carry associated risks that may not be tolerated by team even if patient lacks capacity

21. 2) What is the specific decision to be made? Not all decisions are created equal! Specific decisions require specific capacities We dont have patients give one informed consent for all possible surgeries Similarly, we do not assess patients for all possible capacities Autonomywe want to preserve as much patient independence as possible Ethical reasons Practical reasons Financial reasons

22. 2) What is the specific decision to be made? 75 yo F with ESRD on HD, long-standing paranoia about her family Admitted with uremic encephalopathy, Cr 8.0 Cognitive exam shows executive dysfunction, hallucinations, disorientation, thinks she doesnt need dialysis Pt refusing HD, DVT prophylaxis, rehab placement Each proposed treatment carries different consequencesmust treat them separately She did NOT have capacity to refuse HD, but DID have capacity to refuse fondaparinux and rehab

23. 3) Where on the sliding scale of sophistication? Severity of consequences of a decision dictates the level of sophistication necessary to make it Refusing hangnail treatment does not require the same sophistication as refusing aortic dissection repair

24. Risk/Benefit Table Low BenefitHigh Benefit (Capacity to refuse) Low RiskTube feedsIV Antibiotics High Risk (Capacity to accept) Experimental chemotherapy CABG

25. Sliding Scale of Sophistication 45 yo M with developmental delay, IQ 35, with severe CHF from viral cardiomyopathy When asked what he understands, he says, I have a heart problem, I cant breathe well. When asked what he understands about proposed beta-blockers for CHF, he says, they help the heart relax. When asked about risks, he says, They make me dizzy. When asked what he understands about proposed ventricular assist device placement, he says, its a machine that will help my heart relax. When asked about risks, he says, it might need new batteries. Bottom line: rudimentary understanding is good enough for less risky treatments, but you need sophisticated understanding for more risky treatments

26. 4) 4 Prongs of Capacity? Appelbaum, 2007 NEJM The patient must… 1) Express a consistent choice over time 2) Understand the facts of the situation 3) Appreciate the risks and benefits 4) Use a rational thought process Not all or nonepatients usually have degrees of all 4

27. 4 Prongs of Capacity 1) Express a consistent choice over time No expression leads to a presumption of incapacity Does the patient have a condition impeding their ability to express a choice? (Aphasia, locked-in syndrome, catatonia) Does the patient speak another language? Profound indecisiveness or vacillation in the absence of new information, may indicate incapacity

28. Case #1: Choice 30 yo M Mild developmental delay, Victim in a motor vehicle accident with broken hip Would agree to surgical hip repair, then when transported to OR, would refuse surgery Rescheduled for next day, but repeated this pattern x 3 He was not able to maintain a consistent choice over time in accordance with his stated goals and values Found to lack capacity to refuse surgery; surrogate obtained

29. 4 Prongs of Capacity 2) Understand the facts of the situation Can pt take in (hear, read) the facts? Has pt been told the facts? Does pt remember the relevant information in his or her own terms? Does pt understand cause and effect relationships and probabilities in this situation? Does pt understand the role as decision-maker? Pt and treaters can reasonably disagree about facts, as long as patient is demonstrating appropriate sophistication for the decision

30. Case #2: Understand 60 yo M Severe iron-deficiency anemia, presented to PCP, Hct 11 Sent to ED, refused workup including transfusions My blood counts arent that low. Despite being shown the lab result on paper, he did not believe it Demonstrated pathologic paranoia about malicious intentions of current and past doctors Not safe to be discharged, obtained emergency court order to treat with transfusions against his will

31. 4 Prongs of Capacity 3) Appreciate the risks and benefits of the choice Does pt have an awareness of the seriousness of the illness? Does pt appreciate the likely consequences of treatment or refusal? People are allowed to make bad decisions Severity of consequences typically decrease during hospitalization

32. Case #3 49 yo F Hx schizophrenia, off medication Admitted for swelling in R leg, + DVT Anticoagulation leads to severe vaginal bleeding, dx uterine mass Refuses biopsy and surgery, doesnt acknowledge the risks of having a large untreated mass Found to lack decisional capacity to refuse these interventions Surrogate appointed, ethics consult Procedures canceled, pt started on leuprolide to decrease uterine mass

33. 4 Prongs of Capacity 4) Use a rational thought process Does pt weigh risks and benefits through a logical thought process? Does the conclusion flow logically and is consistent with starting premises, stated goals, and known values? Factors that may play a role: Psychosis Delirium Dementia Phobias Panic/Anxiety Depression Mania Anger Personality/coping style

34. Case #4 70 yo M from AZ s/p motorcycle accident in NM, + pneumothorax, + pelvic fractures, + TBI After 1 week, wants to leave to go home Still tachycardic, on O2, WBC elevated, confused Son present, acts as surrogate, wants to take patient home Team does not feel discharge is safe, asks for capacity eval of pt (and son) Discussion with pt and son They only trust their personal physician in AZ, all care administered by him Had previous CABG, had left hospital after 1 week, no problems Contacted this physician, coordinated care Pt discharged (they lacked capacity, but son was surrogate and acting in accordance with what patient would have decided according to known values)

35. 5) Now what? Document capacity/incapacity Find surrogate decision maker If no surrogate available, one must be appointed But what if it takes months for guardianship to be obtained? Only emergent treatment can be given without informed consent This is also where it is useful for the patient to retain specific capacities to make other decisions… Can capacity be enhanced? Written disclosure Teaching aids Translators Assuage fears Provide familiar supports Consider medications

36. How to Document Capacity Based upon my evaluation of this patient, he/she is aware/unaware of the current medical situation, does/not have a factual understanding of the current situation as evidenced by (give example), is able/unable to rationally manipulate information to make a decision as evidenced by (give example) and does/not express a choice. Therefore, this patient has/lacks the capacity to make this medical decision. If capacity is present note: We should respect the patients right to make this decision. If lacking: A surrogate decision maker should be invoked and the medical decision be deferred to him/her, or if no proxy exists, the team should pursue guardianship.

37. Other Points About Capacity People are allowed to make poor decisions Capacity changes with time and may require serial evaluations Due to changing mental state Due to changing medical situation Due to different decisions to be made Instruments can assist, but cannot replace, capacity assessments

38. Clinical Tools to Assess Capacity Mini-mental State Examination (MMSE)standardized test of cognitive abilities Aid to Capacity Evaluation (ACE)individualized assessment of capacity prongs Capacity to Consent to Treatment Instrument (CCTI)Hypothetical vignettes Hopkins Competency Assessment Test (HCAT)Essay with questions MacCAT-Tindividualized assessment of capacity prongs

39. Table 3. Characteristics of Selected Competency Tests. Copyright restrictions may apply.

40. MMSE What is the year? Season? Date? Day of the week? Month? Where are we now: State? County? Town/city? Hospital? Floor? The examiner names three unrelated objects clearly and slowly, then asks the patient to name all three of them. The patients response is used for scoring. The examiner repeats them until patient learns all of them, if possible. Number of trials: ___________ I would like you to count backward from 100 by sevens. (93, 86, 79, 72, 65, …) Stop after five answers. Alternative: Spell WORLD backwards. (D-L-R- O-W) Earlier I told you the names of three things. Can you tell me what those were? Show the patient two simple objects, such as a wristwatch and a pencil, and ask the patient to name them. Repeat the phrase: No ifs, ands, or buts. Take the paper in your right hand, fold it in half, and put it on the floor. (The examiner gives the patient a piece of blank paper.) Please read this and do what it says. (Written instruction is Close your eyes.) Make up and write a sentence about anything. (This sentence must contain a noun and a verb.) Please copy this picture. (The examiner gives the patient a blank piece of paper and asks him/her to draw the symbol below. All 10 angles must be present and two must intersect.)

41. MMSE Well-known, validated in many populations, available online Designed to diagnose Alzheimer Disease, not assess capacity Not specific to medical decision before the patient Heavily weighted toward orientation, attention, memory (but not executive function) > 24/30, likely capacity 20-24, no association 16-20, likely incapacity < 16/30, very likely incapacity

42. CCTI Vignette about angina On this next task I want you to suppose that I am your personal doctor and that you are my patient. We are going to suppose that you have a medical problem, which I as the doctor am going to tell you about. I want you to listen carefully to the medical problem and then decide what you would do if you really had such a problem. Do you understand? Good. Now let me describe the supposed medical problem. Let us suppose that last night you had sharp heart pains while sleeping. Today you have come to see me, your doctor. I run some medical tests and find out that you have two blocked blood vessels in your heart. As your doctor, I tell you that you have a serious heart problem. I also tell you that you have only two choices for treatment. The first choice is to take medication for the heart problem. The second choice is to have open heart surgery and have the blocked blood vessels replaced.

43. CCTI Vignette about angina If you decide to take the heart medication, you will not need to have a painful and potentially life threatening surgery. There will be no side effects from the medication. However, you will need to take the medication on a daily basis for the rest of your life. In addition, you will have to live a somewhat restricted life at home. You will no longer be able to do some of the activities that you currently enjoy doing. If you decide to have open heart surgery, you will not need to take any heart medication. You will be able to live an unrestricted life and do all of the activities you currently enjoy doing. However, you will feel a great deal of pain in your chest and leg for many weeks after the operation. In addition, the heart operation carries a risk of failure: you have an 80% chance of doing well after the operation, but also a 20% chance of dying during the operation. The operation also carries a small risk of stroke. That is the end of the story. Now try to answer some questions about this story. (Marson et al., 1997)

44. CCTI 6 questions posed to patient about the vignette Not specific to medical decision before the patient Physicians achieved 98% agreement for control subjects, but only 56% agreement for mild AD pts They were individually applying different criteria for judgments of incompetence Followup studies revealed that education, training, and specific capacity standards increased physician agreement to 73% Marson DC, In Pruchno RA and Smyer MA, ed. Challenges of an aging society: ethical dilemmas, political issues. Baltimore, JHU Press, 2007.

45. ACE 1. Able to understand medical problem (Sample questions: What problem are you having now? What problem is Yes bothering you most? Why are you in the hospital? Do you have (name Unsure problem)?) No Observations: ______________________________________________ __________________________________________________________ 2. Able to understand proposed treatment Yes (Sample questions: What is the treatment for [your problem]? Unsure What else can we do to help you? Can you have [proposed treatment]? No Observations: ______________________________________________ _________________________________________________________ 3. Able to understand alternative to proposed treatment (if any) Yes (Sample questions: Are there any other [treatments]? What other Unsure options do you have? Can you have [alternative treatment]? No Observations: ______________________________________________ None Disclosed

46. ACE 4. Able to understand option of refusing proposed treatment Yes (including withholding or withdrawing proposed treatment) Unsure (Sample questions: Can you refuse [proposed treatment]? Can we stop No [proposed treatment]? Observations: _____________________________________________ 5. Able to appreciate reasonably foreseeable consequences of Yes accepting proposed treatment Unsure (Sample questions: What could happen to you if you have [proposed No treatment]? Can [proposed treatment] cause problems/side effects? Can [proposed treatment] help you live longer? ) Observations: _____________________________________________ 6. Able to appreciate reasonable foreseeable consequences of Yes refusing proposed treatment (including withholding or Unsure withdrawing proposed treatment) No (Sample questions: What could happen to you if you don't have [proposed treatment]? Could you get sicker/die if you don't have [proposed treatment]? What could happen if you have [alternative treatment]? (If alternatives are available) Observations: _____________________________________________

47. ACE (Note: for questions 7a and 7b, a yes answer means the persons decision is affected by depression or psychosis) 7a. The person's decision is affected by depression Yes (Sample questions: Can you help me understand why you've decided to Unsure accept/refuse treatment? Do you feel that you're being punished? Do No you think you're a bad person? Do you have any hope for the future? Do you deserve to be treated? ) Observations: _____________________________________________ _________________________________________________________ 7b. The person's decision is affected by psychosis Yes (Sample questions: Can you help me understand why you've decided to Unsure accept/refuse treatment? Do you think anyone is trying to hurt/harm No you? Do you trust your doctor/nurse? ) Observations: _____________________________________________ _________________________________________________________ Overall Impression Definitely capable Probably capable Probably incapable Definitely incapable Comments: (for example: need for psychiatric assessment, further disclosure and discussion with patient or consultation with family)

48. ACE Etchells E, Darzins P, Silberfeld M et al. Assessment of patient capacity to consent to treatment. J Gen Intern Med 1999; 14: 27-34.

49. ACE Available online Specific to medical decision before the patient Free Validated with large (~100) population

50. MacCAT-T

52. Grisso T, Appelbaum PS, Hill-Fotouhi C. Psychiatr Serv 1997. Nov;48(11):1415-9.

53. MacCAT-T Specific to medical decision before the patient Copyrighted, requires purchasing for scoring manual Brief training required Does not give likelihood of incapacity: only indicates how robust each component of capacity may be

54. Problem with Instruments Although instruments help clinicians remember key parts of capacity assessment or estimate the chances of incapacity, they do NOT replace clinical judgment Studies of assessment of consent on patients who were able to consent for the study? Issues of patient selection, more difficult patients excluded

55. Complications of Capacity Complicating factors: Poverty Substance abuse Personality Degenerative neurologic conditions Chronic medical conditions Capacity is based not just on the inherent ability of the person, but also on the context in which the person is making a decision

56. Poverty Lack of finances Lack of insurance Lack of social support Homelessness Tend to alter the facts of the medical situation, and how risky the decision is 60 yo M, homeless, uninsured, no family/friends s/p MVA vs peds, PT recommends strict sling use, pt refuses, often takes sling off Risk of discharge to street vs. staying in hospital against his will to keep sling on?

57. Substance Abuse Willful behavior vs. compulsive behavior? Poor choices vs. impaired judgment? Discrepancy between what pt says and what patient doesdoes this count as incapacity? Tends to be factored into whether patient exercises rational thought process in decision making I typically require extensive recent documented history of repeated discrepancies and risk/benefit analysis before invoking incapacity 48 yo M with ETOHism, ESRD, on HD, chronically misses dialysis 2/2 intoxication Always wants to leave AMA after one dialysis, says hell stop drinking, get help ? Capacity to leave AMA, knowing that hell likely not get help and drink again and miss dialysis and become uremic?

58. Personality Stable manner of coping with environment/stresses Willful behavior vs. compulsive behavior, poor choices vs. impaired judgment? Discrepancy between what pt says and what patient does Tension between current understanding of biological vs. psychological processes Requires extensive documentation of impairment in following through on what is said and risk/benefit analysis 55 yo M with recurrent gangrenous foot, presented with sepsis, stabilized on IV abx, wants to leave AMA. MMSE 30/30, says he prefers to take care of his foot himself. Family says he has always hated hospitals and never takes care of his foot at home. ? capacity to leave AMA

59. Chronic Medical Conditions Progressive loss of cognitive functions Progressive loss of capacities Requires frequent capacity assessments longitudinally Progressive deterioration increasing SSS Increasing use of high risk or low benefit therapies that require increasing sophistication to accept, and decreasing sophistication to refuse: Hemodialysis Chemotherapy Surgery/Transplant Implantable devices Facts and consequences and rational thought affected

60. Case #5 70 yo F, believer in complementary medicine Developed axillary pain, breast mass Tried numerous herbal treatments, acupuncture, biofeedback, to no avail Worsening pain lead her to try to take her life by carbon monoxide poisoning Brought to hospital, has metastases to liver, lung, bone Refuses treatment for breast cancer and depression, wants palliation ? Decisional capacity to refuse workup? She had capacity to refuse, despite being depressed, because her chance of death even with treatment was very high, and would have involved significant toxicity and suffering

61. What about the first case??? 39yo lawyer with Hct 19 refusing transfusion, security called… Told patient I was just there to confirm it would be safe for her to go home Went back into room and apologized for the misunderstanding Elicited that she was fully oriented and cognizant of her situation, but that she was furious with the doctor (and likely scared of the lab result) Declared she had capacity to leave AMA… She decided to stay and have the transfusion!

62. Summary Dont assess capacity if you can avoid it Assess specific capacities, not global Use an instrument to jog your memory Use the 4 prongs Use the sliding scale of sophistication Dont worry alone