1 capacity determination: training professionals to comply with the family health care decisions act...
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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
Jonathan Karmel, Esq., NYSDOH, EMS Briefing, May 2010
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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
Family Health Care Decisions Act, June 1, 2010
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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
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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
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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
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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
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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.
Family Health Care Decisions Act, June 1, 2010
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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”.
Family Health Care Decisions Act, June 1, 2010
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.
Family Health Care Decisions Act, June 1, 2010
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
Jonathan Karmel, Esq., NYSDOH, EMS Briefing, May 2010
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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
Jonathan Karmel, Esq., NYSDOH, EMS Briefing, May 2010
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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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Internet Links for Specific Tests
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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Internet Links for Specific Tests
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