Capacity Determination - Compassion and Support
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Transcript Capacity Determination - Compassion and Support
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
[email protected]
CompassionAndSupport.org
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A nonprofit independent licensee of the BlueCross BlueShield Association
Objectives
Define medical decision-making capacity
Describe determination of medical decisionmaking 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
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Impact of frontal lobe function on ADLs and
decisional capacity
Executive Functions
Executive functions are the cognitive
processes that orchestrate relatively simple
ideas, movements or actions into goaldirected 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 lifesustaining 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
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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
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
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Self-care
Safety and health
Ability to manage money
Ability to use transportation and telephone
Work and leisure skills
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 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
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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 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
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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 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
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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)
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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
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Poor insight
Impulsivity
Intrusion of irrelevant material
Poor self-monitoring
Impaired ability to form and follow through
on a plan
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
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Wechsler Memory Scales subtests
rote verbal learning, as assessed by the ADAS
Hopkins Verbal Learning Test
California Verbal Learning Test
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.
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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 decisionmaking capacity
Patients with Mental Illness in or
admitted from a mental hygiene facility
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Family Health Care Decisions Act, June 1, 2010
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.
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Jonathan Karmel, Esq., NYSDOH, EMS Briefing, May 2010
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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Jonathan Karmel, Esq., NYSDOH, EMS Briefing, May 2010
Capacity Determination and FHCDA
Checklist #1 for Adult Patients
Adult patients with medical decisionmaking 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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Family Health Care Decisions Act, June 1, 2010
Capacity Determination and FHCDA
Checklist #2 for Adult Patients
Adult patients without medical decisionmaking 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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Family Health Care Decisions Act, June 1, 2010
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).
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Family Health Care Decisions Act, June 1, 2010
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
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Family Health Care Decisions Act, June 1, 2010
Capacity Determination and FHCDA
Checklist #5 for Adult Patients
Adult patients without medical decisionmaking 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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Family Health Care Decisions Act, June 1, 2010
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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Family Health Care Decisions Act, June 1, 2010
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”.
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Family Health Care Decisions Act, June 1, 2010
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.
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Family Health Care Decisions Act, June 1, 2010
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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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 decisionmaking capacity
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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 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
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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
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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
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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
Surrogate Decision-Making Clinical Criteria for
DNR Orders: FHCDA vs. Article 29-B
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FHCDA (new law)
Article 29-B (old law)
patient has an illness or injury
which can be expected to
cause death within six
months, whether or not
treatment is provided
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
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
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
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
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It is not the same as eating.
It is sometimes life prolonging.
It is intrusive and isolates patient.
It can cause complications.
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/p
dfs/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_Verb
al_Learning_Task
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Internet Links for Specific Tests
Digit cancellation test
http://en.wikipedia.org/wiki/Digit_Cancellati
on_Test
Stroop color test
http://www.snre.umich.edu/eplab/demos/st
0/stroopdesc.html
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THANK YOU
[email protected]
Visit the MOLST Training Center at
CompassionAndSupport.org
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