1 Capacity Determination: Training Professionals to Comply with the Family Health Care Decisions Act (FHCDA) A nonprofit independent licensee of the BlueCross

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Capacity Determination:Training Professionals to Comply with the

Family Health Care Decisions Act (FHCDA)

A nonprofit independent licensee of the BlueCross BlueShield Association

Patricia Bomba, M.D., F.A.C.P.Vice President and Medical Director, GeriatricsChair, MOLST Statewide Implementation Team

Leader, Community-wide End-of-life/Palliative Care InitiativeChair, National Healthcare Decisions Day New York State Coalition

[email protected] CompassionAndSupport.org

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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)

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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

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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

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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

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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.

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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

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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.

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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

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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

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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.

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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?

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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

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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

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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.

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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.

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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.

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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

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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

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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

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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

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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

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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

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Capacity Assessment: Standardized Tests

MacArthur Competency Assessment Tool Tests the patient’s ability to make a

specific decision Deals with real-time decisions

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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

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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)

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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

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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)

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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

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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.

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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.

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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

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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

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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

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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


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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


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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.


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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).


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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


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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


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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.


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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”.


Determination of Lack of Medical Decision-making Capacity Due to Mental Illness

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“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.


Determination of Lack of Medical Decision-making Capacity Due to Mental Illness

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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

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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

Hierarchy of Medical Decision-Making

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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

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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

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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

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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

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

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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

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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


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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


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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.

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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.

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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

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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.

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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

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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?

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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

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Internet Links for Specific Tests

Geriatric Depression Scale• http://www.chcr.brown.edu/GDS_SHORT_FORM.PDF

Mini Mental State Examination (MMSE) http://www.hospitalmedicine.org/geriresource/toolbox/

pdfs/short_portable_mental_statu.pdf

MacArthur Competency Assessment Test http://www.onlineethics.org/cms/

11148.aspx#nature

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Wechsler Adult Intelligence Test http://en.wikipedia.org/wiki/

Wechsler_Adult_Intelligence_Scale

Wisconsin Card Sort Test http://en.wikipedia.org/wiki/Wisconsin_card_sort

California Verbal Learning http://en.wikipedia.org/wiki/

California_Verbal_Learning_Task

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Digit cancellation test http://en.wikipedia.org/wiki/

Digit_Cancellation_Test

Stroop color test http://www.snre.umich.edu/eplab/demos/st

0/stroopdesc.html

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THANK YOU

Visit the MOLST Training Center atCompassionAndSupport.org

[email protected]

Documents

1 Capacity Determination: Training Professionals to Comply with the Family Health Care Decisions Act (FHCDA) A nonprofit independent licensee of the BlueCross