1. 1 Society’s (California’s) Struggle With Cognitive Decline 2013 Elder Abuse Conference May 21, 2013 Tony Chicotel, Staff Attny California Advocates for Nursing Home Reform www.canhr.org tony@canhr.org

2. 2 Training Roadmap Defining Capacity Capacity Determinations Clashing with Individual Rights Surrogacy

3. 3 Defining Capacity Dictionaries: “capable,” “carrying” (knowledge) Capacity ≠ Competency Statutes and Cases DPCDA Issue-centered capacity

4. 4 Due Process in Competency Determinations Act Probate Code Sections 810 et. seq. Sets a judicial standard for competency Section 810(a): presumption of capacity Section 811 - Functions to consider: 1) alertness and attention; 2) information processing; 3) thought processes; and 4) ability to modulate mood and affect. Section 812 - Presumption shifts if there’s functional impairment. Capacity may still be proven if the person can communicate a decision and understand the nature of the decision, including risks, benefits, & alternatives. Section 813 - Medical Decision-Making: respond, participate, & understand

5. 5 Capacity to Contract incapacity is defined as entirely without understanding (Civ. C. §§ 38, 39) or to be of unsound mind (Civ. C. § 1556) understand the nature, purpose, and effect of the terms (In Re Rains, 428 F.3d 893 (2005)) generally, the greater the financial risk, the greater the understanding required

6. Capacity for Incapacity Planning AHCD: ability to understand the nature and consequences of a decision and to make and communicate a decision (Prob. C. § 4609) DPOA: Same as capacity to contract(Prob. C. § 4120) 6

7. Health Care Decision Making The ability to understand the nature and consequences of a decision including its significant benefits, risks, and alternatives and to make and communicate a decision (Prob. C. § 4609; Prob. C. § 813) determined by the primary care physician unless otherwise stated in an advance directive (Prob. C. § 4658) 7

8. Financial Decision Making determined by method stated by principal in a power of attorney; Conservatorship of the Estate standard: “substantially unable to manage his or her own financial resources or resist fraud or undue influence” (Prob. Code Section 1801(b)) 8

9. Personal Decisions Conservatorship of the Person standard: “unable to provide properly for his or her own personal needs for physical health, food, clothing, or shelter.” (Prob. Code Section 1801(a)) 9

10. Capacity is a Continuum As the gravity of the decision increases, generally the level of capacity needed increases. (Signing for re-fi of the house versus choosing paint color for the house) At some point, basic capacity is enough for all decisions, regardless of gravity. 10

11. 11 Unreliability of Capacity Determinations Marson, Daniel C., Journal of the American Geriatric Society (April 1997): 5 docs with extensive experience in assessing dementia were asked to determine capacity for 29 A.D. patients. The docs had 56% agreement. The results were deemed “ alarming, ” proving physician competency assessment is “ subjective, ” “ inconsistent, ” and “ idiosyncratic. ” The use of a specific definition of capacity improved physician agreement. (76%). A doctor ’ s declaration of incapacity is evidence of incapacity but not legally conclusive.

12. Capacity vs. Competency Only a court’s determination of competency may be used to ignore or override a person’s rights. We see common rights violations with placement, treatment, and visitation. 12

13. 13 Surrogate Decision Making Hierarchy Conservator 3200 Petition Notice, health care Agent providers are not 4711 Oral Designee included Spouse Family 1418.8 IDT

14. 14 Health Care Providers May Not Act as Surrogates 1. Informed consent cases 2. Hlth. & Safe. § 1418.8 3. AB 891 (1999) and 2340 (2006) 4. Prob. Code § 2355 (conservators need special powers) 5. AHCD, Prob. Code § 4701 (providers may not act as agents) 6. Probate Code § 4689 7. Hlth. & Safe. § 1569.698(b)(7) 8. Bias

15. 15 A Note About Public Guardians Surrogate of last resort Case selection is largely discretionary.

16. 16 Surrogacy Limits Surrogates are only empowered if the principal has lost “capacity.” Regardless of principal’s ability, surrogates may NOT override a refusal without court authorization. (Keyhea (178 Cal App 3rd 526): competence is a judicial determination; Probate Code § 4689) Surrogates can provide consent for treatment that principal does not refuse, cannot consent to forcible administration of treatment without court approval.

17. Case Study: Antipsychotic Drugs and Dementia Care Basics: Enormous increase in number of people living with dementia Dementia characterized by confusion, diminished cognition, declining ability to communicate Communication efforts become “behaviors” (medicalized as symptoms - BPSD) 17

18. Case Study: Antipsychotic Drugs and Dementia Care What Happens: Caregivers confronted, even overwhelmed, with behavioral challenges Antipsychotic drugs often “reduce” behaviors Medicalized problem deserves medicalized solution 18

19. Case Study: Antipsychotic Drugs and Dementia Care Impact: FDA Black Box Warning: nearly doubles risk of death Outperformed by placebos Non-pharmacologic alternatives: superior outcomes, cheaper, no side effects Nursing home law requires person- centered care, least-medicating approach 19

20. Campaign to End AP Misuse and Improve Dementia Care 20