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Capacity Determination: Training Professionals to Comply with the Family Health Care Decisions Act (FHCDA) Patricia Bomba, M.D., F.A.C.P. Vice President.

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Presentation on theme: "Capacity Determination: Training Professionals to Comply with the Family Health Care Decisions Act (FHCDA) Patricia Bomba, M.D., F.A.C.P. Vice President."— Presentation transcript:

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 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 Capacity is the ability to take in information, understand its meaning and make an informed decision using the information. Intact capacity permits functional independence. Capacity requires a cluster of mental skills people use in everyday life and includes memory, logic, the ability to calculate and “flexibility” to turn attention from one task to another. Medical determination of capacity is often difficult to determine. There is no standard “tool.” Capacity assessment is a complex process and is not simply determined by the Mini-Mental Status Exam (MMSE). Capacity assessment should involve a detailed history from the patient, collateral history from family, focused physical examination, including cognitive, function and mood screens and appropriate testing to exclude reversible conditions. Capacity requirements vary by task. In terms of advance care planning , the capacity to choose a trusted individual as an appropriate Health Care Agent differs from the capacity to agree to a medical procedure or treatment.

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 Medical decisions about life-sustaining tx
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 Capacity is the ability to take in information, understand its meaning and make an informed decision using the information. Intact capacity permits functional independence. Capacity requires a cluster of mental skills people use in everyday life and includes memory, logic, the ability to calculate and “flexibility” to turn attention from one task to another. Medical determination of capacity is often difficult to determine. There is no standard “tool.” Capacity assessment is a complex process and is not simply determined by the Mini-Mental Status Exam (MMSE). Capacity assessment should involve a detailed history from the patient, collateral history from family, focused physical examination, including cognitive, function and mood screens and appropriate testing to exclude reversible conditions. Capacity requirements vary by task. In terms of advance care planning , the capacity to choose a trusted individual as an appropriate Health Care Agent differs from the capacity to agree to a medical procedure or treatment.

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? Informed medical decision making entails assuring that patients and families understand: 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 patient’s 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 Capacity is the ability to take in information, understand its meaning and make an informed decision using the information. Intact capacity permits functional independence. Capacity requires a cluster of mental skills people use in everyday life and includes memory, logic, the ability to calculate and “flexibility” to turn attention from one task to another. Medical determination of capacity is often difficult to determine. There is no standard “tool.” Capacity assessment is a complex process and is not simply determined by the Mini-Mental Status Exam (MMSE). Capacity assessment should involve a detailed history from the patient, collateral history from family, focused physical examination, including cognitive, function and mood screens and appropriate testing to exclude reversible conditions. Capacity requirements vary by task. In terms of advance care planning , the capacity to choose a trusted individual as an appropriate Health Care Agent differs from the capacity to agree to a medical procedure or 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
Short Form: 15 question scale 1-point for each “bolded” question Cut-off: above 5 suggests depression

21 Capacity Assessment: Standardized Tests Assess 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
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 Tests Assess 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 Test Assess 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 Capacity is the ability to take in information, understand its meaning and make an informed decision using the information. Intact capacity permits functional independence. Capacity requires a cluster of mental skills people use in everyday life and includes memory, logic, the ability to calculate and “flexibility” to turn attention from one task to another. Medical determination of capacity is often difficult to determine. There is no standard “tool.” Capacity assessment is a complex process and is not simply determined by the Mini-Mental Status Exam (MMSE). Capacity assessment should involve a detailed history from the patient, collateral history from family, focused physical examination, including cognitive, function and mood screens and appropriate testing to exclude reversible conditions. Capacity requirements vary by task. In terms of advance care planning , the capacity to choose a trusted individual as an appropriate Health Care Agent differs from the capacity to agree to a medical procedure or treatment.

26 Capacity Determination: Special Consideration Cognitive 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 Function Executive 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):

32

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 NOT changed. 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 To be respected and understood as people
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 Directives Challenges 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 Directives Challenges 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 Always consider the patient’s/resident’s goals Give both choice and guidance Consider quality of life and personhood for patients who cannot speak for themselves

51 Surrogate Decision-Making Under FHCDA: Challenges for Patients without Capacity
FHCDA only applies in hospitals and nursing homes Higher clinical and decision-making standards apply when a surrogate is making a decision Special requirements for Ethics Review Committees apply

52 Surrogate Decision-Making Under FHCDA: Clinical Criteria for Decisions to Withhold or Withdraw Life-Sustaining Treatment Treatment would be an extraordinary burden to the patient and an attending physician determines, with the independent concurrence of another physician, that, to a reasonable degree of medical certainty and in accord with accepted medical standards: the patient has an illness or injury which can be expected to cause death within six months, whether or not treatment is provided; or the patient is permanently unconscious; or The provision of treatment would involve such pain, suffering or other burden that it would reasonably be deemed inhumane or extraordinarily burdensome under the circumstances and the patient has an irreversible or incurable condition, as determined by an attending physician with the independent concurrence of another physician to a reasonable degree of medical certainty and in accord with accepted medical standards For DNR orders, this is a change in the law, because the criteria are slightly different under Article 29-B Jonathan Karmel, Esq., NYSDOH, EMS Briefing, May 2010

53 Surrogate Decision-Making Clinical Criteria for DNR Orders: FHCDA vs
Surrogate Decision-Making Clinical Criteria for DNR Orders: FHCDA vs. Article 29-B FHCDA (new law) patient has an illness or injury which can be expected to cause death within six months, whether or not treatment is provided patient is permanently unconscious The provision of treatment would involve such pain, suffering or other burden that it would reasonably be deemed inhumane or extraordinarily burdensome under the circumstances and the patient has an irreversible or incurable condition Article 29-B (old law) patient has a terminal condition: an illness or injury from which there is no recovery, and which reasonably can be expected to cause death within one year patient is permanently unconscious resuscitation would be medically futile resuscitation would impose an extraordinary burden on the patient in light of the patient's medical condition and the expected outcome of resuscitation for the patient Jonathan Karmel, Esq., NYSDOH, EMS Briefing, May 2010

54 Ethics Committees: Special Requirements for Surrogate Decision-Making Under FHCDA
Hospital When the MOLST order involves the withdrawal or withholding of nutrition or hydration provided by means of medical treatment, and the attending physician objects to the order the ethics review committee (including a physician who is not directly responsible for the patient’s care) or an appropriate court has determined that the medical order meets the patient-centered and clinical standards. Nursing Home Other than a DNR order, when the MOLST order involves the withdrawal or withholding life-sustaining treatment orders based on “irreversible or incurable condition” the ethics review committee, (including at least one physician who is not directly responsible for the patient's care) or an appropriate court has determined that the orders meet the patient-centered and clinical standards. NOTE: The requirement does NOT apply when a patient or a Health Care Agent makes decisions on the MOLST.

55 Reminder About Long-term Tube Feeding
It can be refused, like any other medical treatment. In New York Decision by a health care agent requires evidence of patient preference Decision by a surrogate in a nursing home requires Ethics Review Committee In a hospital, if the attending physician disagrees with an order to forego artificial nutrition, Ethics Review Committee required It is not the same as eating. It is sometimes life prolonging. It is intrusive and isolates patient. It can cause complications.

56 Conclusion: Address Difficult Issues While the Patient has Capacity
Values history What makes life most worth living? Are there situations when life would not be worth living? Surrogate decision-maker - health care agent Who do you trust to make decisions if you can’t? What values/beliefs do you have to guide them? Specific treatment preferences Do Not Resuscitate/Allow Natural Death Life-Sustaining Treatment; especially feeding tube

57 MOLST “Clear and Convincing” evidence
MOLST is completed in consultation with a physician when the patient’s life expectancy is less than a year. Provides better proof that the patient holds a firm and settled commitment to the termination of life supports under the circumstances that actually exist when the decision whether to terminate life-sustaining treatment must be made. MOLST “Clear and Convincing” evidence MOLST is completed in consultation with a physician when the patient’s life expectancy is less than a year. Provides better proof that the patient holds a firm and settled commitment to the termination of life supports under the circumstances that actually exist when the decision whether to terminate life-sustaining treatment must be made.

58 Summary Many patients face cognitive impairment late in life
Patients and families become the focus of care Knowing what a patient would want is imprecise Quality-of-life concerns must be addressed A consensus-based process based on what is known about the patient’s values and wishes as interpreted by the family is the best approach Use available medical evidence Many challenging decisions will be needed over time, so the commitment not to abandon is critical

59 Considerations for Providers
What are your biggest fears about completing an advance directive? What are your biggest fears about not completing such a document? Would there be any circumstances where you would want life-sustaining therapy stopped?

60 Considerations for Providers
Take Action! Do Your Health Care Proxy Today! Follow the “Five Easy Steps” in the Community Conversations on Compassionate Care (CCCC) Program

61 Internet Links for Specific Tests
Geriatric Depression Scale Mini Mental State Examination (MMSE) MacArthur Competency Assessment Test

62 Internet Links for Specific Tests
Wechsler Adult Intelligence Test Wisconsin Card Sort Test California Verbal Learning

63 Internet Links for Specific Tests
Digit cancellation test Stroop color test

64 Visit the MOLST Training Center at
THANK YOU Visit the MOLST Training Center at CompassionAndSupport.org


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