Capacity Determination: Training Professionals to Comply with the Family Health Care Decisions Act (FHCDA)

1. Capacity Determination:Training Professionals to Comply with the Family Health Care Decisions Act (FHCDA) Patricia Bomba, M.D., F.A.C.P. Vice President and Medical Director, Geriatrics Chair, MOLST Statewide Implementation Team Leader, Community-wide End-of-life/Palliative Care Initiative Chair, National Healthcare Decisions Day New York State Coalition Patricia.Bomba@lifethc.com CompassionAndSupport.org A nonprofit independent licensee of the BlueCross BlueShield Association

2. Objectives • Define medical decision-making capacity • Describe determination of medical decision-making capacity, including a patient’s ability to make complex medical decisions related to life-sustaining treatment • Illustrate how and when to activate traditional advance directives (health care proxy and living will) when using the MOLST • Discuss a practical strategy for training professionals to comply with the Family Health Care Decisions Act (FHCDA)

3. Capacity: Definition • Capacity is the ability to: • take in information • understand its meaning and • make an informed decision using the information • Capacity allows us to function independently

4. Capacity Includes Mental Skills Used to Function in Everyday Life • Memory: ability to remember things • Language • Ability to use logic • Ability to calculate • Ability and “flexibility” to turn attention from 1 task to another • Executive functions

5. Executive Functions • Problem solving • Planning • including appreciating consequences of an action • Initiation, direction, execution of actions • Sequencing • Abstraction and insight • Capacity to monitor one’s one behavior • Inhibition of inappropriate behaviors • Impact of frontal lobe function on ADLs and decisional capacity

6. Executive Functions • Executive functions are the cognitive processes that orchestrate relatively simple ideas, movements or actions into goal-directed behaviors. • Without executive functions, behaviors important for independent living can be expected to break down into their component parts.

7. Capacity Determination • Capacity is task-specific • Clinicians determine a patient’s capacity to make decisions regarding: • Medical care and treatment • Managing money • Writing a will • Continuing to drive • Possessing firearms • Overarching principle in capacity determination • Assessment of the patient’s ability to understand the consequences of a decision

8. Capacity vs. Competence • A physician evaluates a patient and determines capacity to make medical decisions. • Under FHCDA, in a hospital or nursing home, a health or social service practitioner can provide a concurring determination when a surrogate is making a decision. • Competence and Incompetence are legal terms. • Terms imply that a court has taken a specific action.

9. Type of Medical Decisions Made by Surrogate Decision-Maker When Patients Lose Capacity • Medical decisions about life-sustaining tx • Cardiopulmonary resuscitation • Mechanical ventilation • Dialysis • Feeding tube • Medical decisions about ordinary treatment • Antibiotics • Medical decisions about palliative care • Pain and symptom management

10. Medical Decision-Making Capacity: Three Key Patient Abilities • Ability to understand relevant information about his or her condition and the probable outcomes of the disease and of various potential interventions and its meaning in terms of the • disease process • proposed therapy and alternative therapies; • advantages, adverse effects and complications of each therapy • Possible course of the disease without intervention • Ability to make an informed decision using the information, based on his or her beliefs and values and understand the consequences of the decision • Ability to communicate a decision

11. Medical Decision-Making Capacity • Even physicians cannot predict the full implications of complex medical decisions. • A physician rarely know all the consequences of an intervention or the precise natural history of a disease. • Examine goals for care • Very helpful to explore a patient’s hopes and fears. • Help the patient clarify his or her goals for care so that treatment options offered are based on these goals for care.

12. Shared, Informed Medical Decision Making • Will treatment make a difference? • Do burdens of treatment outweigh benefits? • Is there hope of recovery? • If so, what will life be like afterward? • What does the patient value? • What is the goal of care?

13. Cultural Differences • Cultural differences can make assessing medical decision-making more difficult. • Capacity assessment involves: • Abstract concepts not easily communicated in another language • Interpreting value judgments on the basis of what is considered reasonable • IMPORTANT: Avoid assuming patients hold certain beliefs on the basis solely of ethnic background • Varying degrees of acculturation and assimilation of culture • Variation within an ethnic group • Always ask the patient

14. Capacity Determination: Specific Tasks in Advance Care Planning • Capacity is task-specific • Capacity to choose a health care agent vs. ability to make health care decisions • Capacity to make medical decisions based on the complexity of the decisions • simple health care decisions • request for palliation (relief of pain and suffering) • complicated decisions regarding DNR and life-sustaining treatment

15. Capacity Determination: Key Concepts • Capacity assessment is a very complex process. • There is no standard “tool”. • A mini-mental state examination (MMSE) alone is not sufficient to determine capacity. • Determination of decisional capacity is a functional assessment. • There is no substitute for critical observation of the process itself.

16. Capacity Assessment: What “Not” To Do • Purely base assessment on a third party’s opinion. • Simply have a conversation with the patient. • Merely use preferences expressed by the patient. • Only use the MMSE score and designate a score below which the patient lacks capacity.

17. Capacity Assessment: What “Not” To Do • Consider “abnormal” answers as evidence of lack of capacity rather than recognizing the patient’s lifestyle and/or personal experience. • Disregard individual habits or behaviors which the person always had. • Use risky behavior as evidence.

18. Capacity Assessment: Key Elements • Detailed medical history from the patient, with attention to the patient’s ability to: • Organize time relationships • Recall facts • Reason abstractly • Collateral history from family, if available • Focused physical examination • Assess cognition, function and screen for depression • Testing to exclude reversible conditions that may cause temporary incapacity

19. Kohlman Evaluation of Living Skills (KELS)Assess Functional Status • Tests the patient’s ability to carry out activities of daily living and ability to live independently • Self-care • Safety and health • Ability to manage money • Ability to use transportation and telephone • Work and leisure skills

20. Geriatric Depression Scale: Assess for Depression • Geriatric Depression Scale • http://www.chcr.brown.edu/GDS_SHORT_FORM.PDF • Short Form: 15 question scale • 1-point for each “bolded” question • Cut-off: above 5 suggests depression

21. Capacity Assessment: Standardized TestsAssess Cognition • Traditional tests of cognitive function have some, but limited, use in determining decisional capacity. • Mini-Mental State Examination (MMSE) • Capacity to Consent to Treatment Instrument • Competency Assessment Test • MacArthur Competency Assessment Tool

22. Mini-Mental State Examination (MMSE)Assess Cognition • Mini-Mental State Examination (MMSE) • Overall score of 10 or less indicates such diminished cognitive ability that it is unlikely the patient retains decisional capacity • Some deficits may be relevant: immediate memory; attention; word finding; understanding simple verbal or written instructions and ability to express simple ideas in writing • Others are not: calculation and visual spatial relationships

23. Capacity Assessment: Standardized TestsAssess Cognition • Capacity to Consent to Treatment Instrument • Asks the person to read between two vignettes and then decide between two treatment options • Competency Assessment Test • Helps judge the patient’s ability to understand advance directives • Both instruments deal with hypotheticals • Adds more abstraction than is necessary for deciding real-time issues

24. Capacity Assessment: Standardized Tests • MacArthur Competency Assessment Tool • Tests the patient’s ability to make a specific decision • Deals with real-time decisions

25. Capacity Determination: Best TestAssess Three Key Patient Abilities • Patient understands relevant information about his or her condition and the probable outcomes of the disease and of various potential interventions and its meaning in terms of the: • disease process • proposed therapy and alternative therapies; • advantages, adverse effects and complications of each therapy • Possible course of the disease without intervention • Patient is able to make an informed decision using the information, based on his or her beliefs and values and understand the consequences of the decision • Patient is able to communicate a decision

26. Capacity Determination: Special ConsiderationCognitive Impairment Due to Dementia • Capacity determination when the patient has a cognitive impairment due to dementia • Testing for executive dysfunction • Neuropsychiatric testing • Executive Interview 25-item examination (EXIT-25)

27. Executive FunctionExecutive Interview 25-item examination (EXIT-25) • Correlates well with subjective measures of decisional capacity • Observation of the patient while completing tasks may reveal • Poor insight • Impulsivity • Intrusion of irrelevant material • Poor self-monitoring • Impaired ability to form and follow through on a plan

28. Neuropsychiatric Testing • Intellectual functioning • Wechsler intelligence scales • Executive functioning • clinical interpretation of the processes used • short category test (set development, maintenance, and shifting task) • Stroop • Wisconsin Card Sort (set development, maintenance, and shifting task)

29. Neuropsychiatric Testing • Attention • Verbal Selective Attention Test (V-Sat) • 2 & 7 cancellation test (processing speed) • word reading and color naming subtests of the Stroop (processing speed) • Learning • Wechsler Memory Scales subtests • rote verbal learning, as assessed by the ADAS • Hopkins Verbal Learning Test • California Verbal Learning Test

30. Pitfalls in Capacity Determination of Patients with Dementia • Important to avoid bias due to the patient’s age. • Distinguish dementia from normal memory loss due to aging. • May be difficult for patients to recall the treatment plan or diagnosis. • The family and the patient may not acknowledge the diagnosis. • The patient covers up deficits. • The patient has partial capacity and insight. • Assess the patient for signs of undue influence from family or others.

31. Informed Consent in Older Adults • A systematic review of the published literature on informed consent reveals evidence for impaired understanding of informed consent information in older subjects and those with less formal education. • Effective strategies to improve the understanding of informed consent information should be considered when designing materials, forms, policies, and procedures for obtaining informed consent. Sugarman, et. Al. Getting meaningful informed consent from older adults: a structured literature review of empirical research JAGS 1998 Apr;46(4):517-24.

33. DOH-5003 MOLST Form • More user-friendly • Aligns with recently enacted Family Health Care Decisions Act (FHCDA) • Approved by the Commissioner of NYSDOH • Approved by the Commissioner of NYS Office of Mental Health (OMH) for use in patients with mental illness in a mental hygiene facility • Approved by the Commissioner of NYS Office for People with Developmental Disabilities (OPWDD) for patients with developmental disabilities who lack medical decision-making capacity

34. Capacity Determination: FHCDA and MOLST • Adult Patients • Minor Patients • Patients with Developmental Disabilities who lack medical decision-making capacity • Patients with Mental Illness in or admitted from a mental hygiene facility Family Health Care Decisions Act, June 1, 2010

35. Surrogate Decision-Making Under FHCDA • Patients are presumed to have capacity unless a physician, with the concurrence of another health or social service practitioner at the facility acting within his or her scope of practice, determines that the patient lacks capacity. • In a general hospital, the concurring determination is only required for decisions to withhold or withdraw life-sustaining treatment. • If patients lack capacity, there is a surrogate list. Jonathan Karmel, Esq., NYSDOH, EMS Briefing, May 2010

36. Surrogate List • MHL Article 81 guardian • Spouse, if not legally separated from the patient, or the domestic partner • Adult child • Parent • Adult sibling • Close friend Jonathan Karmel, Esq., NYSDOH, EMS Briefing, May 2010

37. Capacity Determination and FHCDA • Checklist #1 for Adult Patients • Adult patients with medical decision-making capacity (any setting) • All patients are presumed to have capacity to make decisions, unless deemed to lack capacity to make medical decisions Family Health Care Decisions Act, June 1, 2010

38. Capacity Determination and FHCDA • Checklist #2 for Adult Patients • Adult patients without medical decision-making capacity who have a health care proxy (any setting) • Two physicians still must determine capacity as the Health Care Proxy Law has NOTchanged. Family Health Care Decisions Act, June 1, 2010

39. Capacity Determination and FHCDA • Checklist #3 for Adult Patients • Adult hospital or nursing home patients without medical decision-making capacity who do not have a health care proxy, and decision-maker is a Public Health Law Surrogate (surrogate selected from the surrogate list) • Capacity determination by physician and concurring determination by a health or social service provider (consistent with facility policy). Family Health Care Decisions Act, June 1, 2010

40. Capacity Determination and FHCDA • Checklist #4 for Adult Patients • Adult hospital or nursing home patients without medical decision-making capacity who do not have a health care proxy or a Public Health Law Surrogate • Determine capacity same as Checklist #3 Family Health Care Decisions Act, June 1, 2010

41. Capacity Determination and FHCDA • Checklist #5 for Adult Patients • Adult patients without medical decision-making capacity who do not have a health care proxy, and the MOLST form is being completed in the community • Determine capacity same as Checklist #3 Family Health Care Decisions Act, June 1, 2010

42. Determination of Lack of Medical Decision-making Capacity Due to Developmental Disability • If lack of capacity is due to a developmental disability, a concurring opinion for capacity determination requires special experience or training in developmental disabilities. Family Health Care Decisions Act, June 1, 2010

43. Determination of Lack of Medical Decision-making Capacity Due to Mental Illness • If lack of capacity is due to a mental illness, a concurring opinion on capacity determination must be rendered by a “qualified psychiatrist”. • Examples: bipolar disorder, schizophrenia • Mental illness does NOT include dementia • Either the attending physician or the health or social services practitioner who determined that the patient lacks medical decision-making capacity is a “qualified psychiatrist”. Family Health Care Decisions Act, June 1, 2010

44. Determination of Lack of Medical Decision-making Capacity Due to Mental Illness • “Qualified psychiatrist” means a physician licensed to practice medicine in New York State, who is a diplomate or eligible to be certified by the American Board of Psychiatry and Neurology or who is certified by the American Osteopathic Board of Neurology and Psychiatry or is eligible to be certified by that board. • The determination by the qualified psychiatrist is documented in the medical record. • For patients in or admitted from a mental hygiene facility, see special checklists. Family Health Care Decisions Act, June 1, 2010

45. Hierarchy of Medical Decision-Making • Patient’s Current Wishes • If the patient has decisional capacity, this ALWAYS takes precedence. • Substituted judgment • Done by the surrogate decision-maker only when the patient is not fully capable of making decisions • Based on the patient’s prior values and wishes • Making decisions as the patient would • Advance directive is used as a guide • Patient input is used when possible even if the patient is not fully capable of making the decision • Health care agent or surrogate

46. Hierarchy of Medical Decision-Making • Best interests • Done by the surrogate decision-maker when the patient lacks decisional capacity and evidence does not exist for substituted judgment • Balancing benefits and burdens • Input from caregivers is very important • Using our values and beliefs, when there is no surrogate • If applicable; e.g. §1750-b Surrogate for patient who never had medical decision-making capacity

47. Practical Strategies: “Best Interests” When Patients Lack Medical Decision-making Capacity • To be respected and understood as people • To have their goals and values honored • personhood • spirituality • dignity • To lessen suffering and enhance quality of life

48. Additional Practical Strategies When Patients Lack Medical Decision-Making Capacity • Meet with the patient, health care agent/surrogate and key caregivers • Allow each person to tell their story • Integrate quantitative cognitive assessments • Be honest and direct about the diagnosis • Respond to emotions elicited • Identify areas of agreement and disagreement

49. Advance DirectivesChallenges for Patients with Capacity • Complete a health care proxy, if none exist • Encourage patients / family members to do the same • Develop goals for care with the patient/resident • Discuss patient/resident goals for care with family and friends

50. Advance DirectivesChallenges for Patients without Capacity • Empower the designated health care agent • If there is no health care proxy and the patient retains decisional capacity to choose a health care agent, complete a health care proxy • Health care agent uses substituted judgment • Engage families in the process • Alwaysconsider the patient’s/resident’s goals • Give both choice and guidance • Consider quality of life and personhood for patients who cannot speak for themselves