Assessing Decision Making Capacity in Adult Protective Services Clients

1. Assessing Decision Making Capacity in Adult Protective Services Clients Jason Schillerstrom, MD schillerstr@uthscsa.edu

2. Learning Objectives • Describe the process of decisional capacity assessments. • Understand the reluctance of some primary care physicians to evaluate capacity. • Describe the relationship between executive function and self-care abilities.

3. Scope of the problem and risk assessment

4. Scope of the problem • How many elders >65yrs in Texas? • How many 18-64yrs with disability in Texas? • How many completed in-home investigations in FY 2013? • How many validated in-home investigations? • How many guardianships are there in Texas?

5. Scope of the problem • How many elders >65yrs in Texas? • 2,954,972 • How many 18-64yrs with disability in Texas? • 1,710,430 (elders + disabled = 4,665,402) • How many completed in-home investigations in FY 2013? • 69,383 (=1.5% of elders + disabled) • How many validated in-home investigations? • 48,392 • How many guardianships are there in Texas? • 52,000 ( = 1.1% of elders + disabled)

6. Questions to Answer for APS • Does the APS client have a psychiatric diagnosis? • Does the client have decision making capacity? • What level of care do they need? • Do they need to be emergently removed from their home?

7. Texas Legal Definition of Incapacity in Guardianship An incapacitated person is an adult who, because of a physical or mental condition, is substantially unable to provide food, clothing, or shelter for himself or herself, to care for the individual’s own physical health, or to manage the individual’s own financial affairs.

8. Texas Legal Definition of Incapacity in Guardianship An incapacitated person is an adult who, because of a physical or mental condition, is substantially unable to provide food, clothing, or shelter for himself or herself, to care for the individual’s own physical health, or to manage the individual’s own financial affairs.

9. Ethical, Legal, or Clinical Issues to Consider First • Should the client be notified that I am coming? • Should the client be informed about the purpose of my evaluation? • How much information should I get from APS? Are they biasing my assessment? • Should the capacity assessment be completed by a physician unknown to the client (me) or the client’s physician?

10. Decisional Capacity and the Primary Care Physician • Is the PCP the best person to do the evaluation? • Should the PCP have to do the capacity evaluation? • What are reasons the PCP may not want to do the evaluation?

11. PCP’s and Capacity Determinations • No compensation • Risk of subpoena • Little training in capacity assessments and not a routine assignment • These assessments are very different from the medical model • Potential fracturing of the doctor-patient relationship

12. Scientific Dilemmas? • How reliable is IADL self report? Proxy report? • What is the best way to measure functional status in these cases? • What cognition(s) are essential to functional and decisional capacity?

13. Which Cognitive Functions are most Essential to Decisional Capacity? Memory Orientation Language Math Visuospatial Executive Function

14. Executive Function • That set of cognitive processes that allow one to act independent of the environment instead of displaying behaviors mediated by the environment. • When executive processes deteriorate, people become dependent on habits and routine.

15. Executive Screens • Verbal Fluency Task • FAS - >10 words in 1 minute • Verbal Trailmaking Task • Past “5E”

16. Stroop Color Delis-Kaplin Executive Function System (D-KEFS). Pearson Education, Inc.; San Antonio, TX. (2001)

17. Stroop Number Delis-Kaplin Executive Function System (D-KEFS). Pearson Education, Inc.; San Antonio, TX. (2001)

18. Stroop Interference Delis-Kaplin Executive Function System (D-KEFS). Pearson Education, Inc.; San Antonio, TX. (2001)

19. The Executive Interview • 25 item multitask assessment • 0 = correct response • 1 = partial error • 2 = complete error • Scoring Range Approximations: • Young adults: 0-7 • Elderly retirees: 8-14 • Assisted Living: 15-22 • Nursing Home: 23-30 • Locked Units: >30

20. Clock Drawing Tasks

21. CLOX: An Executive Clock Drawing Task back

22. Instructions: CLOX1 • Place the blank (back) side of the CLOX form in front of the subject. • State “Draw me a clock that says 1:45. Set the hands and numbers on the face so that a child could read them.” • Once the subject begins the task, no further assistance is allowed (i.e. no prompting or repeat instructions). State “Sir/Ma’am, it’s up to you” for each question.

23. Circular face present? Age: 64 years GDS: 5/15 MIS: 8MMSE: 28CLOX1: 5CLOX2: 11

24. Only numerals 1-12 among the numerals present? Age: 83 years GDS: 2/15 MIS: 6MMSE: 18CLOX1: 7CLOX2: 7EXIT25: 36

25. Arrow pointing inward Age: 85 years GDS: 1/15 MIS: 2MMSE: 15CLOX1: 7CLOX2: 12EXIT25: 36

26. Intrusion from “face”Intrusion from circle below Age: 60 years GDS: 1/15 MIS: 8MMSE: 30CLOX1: 6CLOX2: 13EXIT25: 26

27. Who has capacity?

28. MMSE: 25/30 • CLOX1: 6/15 • CLOX2: 11/15 • Verbal fluency (S): 2 words • EXIT25: 14/50 7 years, 4 months

29. 10 years, 5 months • MMSE: 27/30 • CLOX1: 12/15 • CLOX2: 13/15 • Verbal fluency (S): 14 words • EXIT25: 8/50

30. Executive Function Determines Level of Care % Variance in Level of Care Among N=148 CCRC Residents (Total Model R2 = 0.57)

31. Executive Function predicts decisional abilities. Schillerstrom JE, et al. Executive function and capacity to consent to a noninvasive research protocol. Am J Geriatri Psychiatry 2007; 15:159-162

32. Key Points • Guardianships are common and rare. • Executive function is the cognitive domain that best predicts self care abilities. • Executive function predicts a person’s ability to understand, appreciate, and use reasoning to make personal decisions.

33. Case Example - 1 • 88yr HF referred for neglect – recidivistic case. Lives by self in San Antonio. • House is in severe disrepair, squalorous, animal feces throughout, human waste in toilet and bathtub, severe insect infestation, dead dog recently discovered. • PCP knows patient and believes she may have capacity (“She misses appt’s but takes her meds. She has bad hygiene but she has capacity.”). • Family seems to either underestimate health/safety hazards or overestimate her abilities. They brought her a broom 4 days ago. • Utilities are frequently disconnected. APS and family have had them paid and reconnected on multiple occasions.

34. Case Example - 1 • Past Psychiatry History: previously diagnosed with “dementia”. • Past Medical History: unknown • Medications: unknown

35. Case Example - 1 • Social History: • Raised in San Antonio • 4yr Sociology degree • Divorced >10 years • No biological children – has step-children • Denies tobacco and alcohol • Retired receptionist; earns $550/month • Receives meals-on-wheels.

36. Case Example - 1

37. Case Example - 2

38. Risk Factors • What are this client’s modifiable risk factors for future neglect? • What are this client’s non-modifiable risk factors for future neglect? • What options does the APS Specialist have?

39. UTHSCSA Geri Psych Battery

40. APS Clients Compared to Geri-Psych Clinic Patients Schillerstrom JE, et al. Executive function in self-neglecting adult protective services referrals compared with elder psychiatric outpatients.AmericanJournal of Geriatric Psychiatry 2009; 17:907-910.

41. Cognitive Correlates of Money Management Schillerstrom JE, Birkenfeld EM, Yu AS, Goldstein DJ, Royall DR. Neuropsychological correlates of performance based functional status in elder Adult Protective Services (APS) referrals for capacity assessments. Journal of Elder Abuse and Neglect (in press).

42. Cognitive Correlates of Telephone Ability Schillerstrom JE, Birkenfeld EM, Yu AS, Goldstein DJ, Royall DR. Neuropsychological correlates of performance based functional status in elder Adult Protective Services (APS) referrals for capacity assessments. Journal of Elder Abuse and Neglect (in press).

43. Squalor Dwellers

44. Recidivism

45. Kaplan-Meier survival estimates 1.00 0.75 0.50 0.25 0.00 0 500 1000 1500 2000 analysis time Pass CLOX2 Fail CLOX2 Survival Estimates – CLOX2

46. Case Example - 1 • Geriatric Depression Scale: 6/15 • Memory Impairment Screen: 5/8 • MMSE: 18/30 • CLOX1: 6/15 • CLOX2: 10/15 • EXIT25: 28/50

47. Does this client have capacity? An incapacitated person is an adult who, because of a physical or mental condition, is substantially unable to provide food, clothing, or shelter for himself or herself, to care for the individual’s own physical health, or to manage the individual’s own financial affairs.

48. Case Example - 1 • What can we predict about her ability to maintain a safe shelter if only offered a “heavy cleaning”? • What can we predict about her ability to manage her healthcare needs? • What can we predict about her financial management? • What can we predict about her mortality? • What should the next step be?

49. Case Example #2 • 59yr black female has been paralyzed for 15 years with very limited use of upper and lower extremities. • She moved to San Antonio to live in house with provider services. However, she has cycled through multiple providers due to personality conflict issues. • She often has bed sores that evolve into open wounds that she struggles to care for. • Two years ago one of these wounds was discovered to be severely infected with maggots crawling in it.

50. Case Example #2 • Her primary care physician is frustrated with the client’s ambivalence regarding her medical needs. • She struggles to use her wound vacuum appropriately which results in delayed healing. • She is a frequent 911 caller. Calls 911 for inappropriate requests such as to come light a cigarette for her. • She frequently calls state agencies to complain about the care she receives. • She owes $13,000 in taxes. • She depends on neighbors for general support.