After the Diagnosis (Erica F. Wood)
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Transcript of After the Diagnosis (Erica F. Wood)
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After the Alzheimers Diagnosis:
Legal Planning
Erica Wood, Esq.
Commission on Law and AgingAmerican Bar Association
National Press Foundation
May 24, 2011
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Todays Talk
Key steps to get affairs in order after diagnosis of
serious illness such as Alzheimers disease
Paying for health care and support
Managing health and personal decisions
Managing money and property
Other key planning considerations Last resort: guardianship
Get legal documents in order
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Plan How to Pay for Health Care
and Support Needs Employer-based disability benefits
Some employers have short-term or long-term disabilityinsurance
Social Security disability benefits Recent SSA decision to fast track disability decisions
for individuals with Alzheimers disease
Supplemental Security Income benefits Means tested program by SSA
Veterans benefits Broad array of financial benefits
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Plan How to Pay for Health Care Needs
Medicare Primary payer for individuals with Alzheimers disease; eligible at
65 or after 24 months on SSDI
Private health insurance Employer-based or private insurance
Long term care insurance
Medicaid Federal/state program for low income individuals and children
Each states program is different
Veterans benefits Broad array health care benefits, including long-term care benefits
and nursing home care
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Managing Health& Personal Decisions
At some point, someone else will have to
make health care decisions for an individualwith dementia
Who will be the decision maker?
What guidance will be provided in advance?
How will it be communicated?
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Families decide(Devolved/Default)
Courts
decide(Displaced)
Individual(Directed)
Others
designated by
individual(Delegated)
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Health Care Advance Directives
In the 1970s -1980s, states generally enactedmultiple laws: Living Will, Health Care Powers of
Attorney with overlap from consent laws.
Today about half the states have combined/comprehensive Advance Directive laws
But still much variation in detail, especially focusedon forms.
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Types of Advance Directives
Living Wills
Directive that provides guidance or instructionabout the care and decisions wanted
Usually includes specific instructions on life-sustaining conditions
Power of Attorney for Health Care
Choose an agent/proxy (and successor) to makehealth care decisions if unable to make them
Should be someone who can be a strongadvocate and willing to make difficult decisions
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What ADs Can Do
1. CAN be an important part of acommunication process in advancecare planning
2. CAN help you stop and think andDISCUSS.
Less about specific medical decisions, more
about GOALS, VALUES & PRIORITIES:3. CAN empower and give direction if
reflective of the patients voice.Not the legislatures canned language.
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What ADs CantDo
Cant provide cookbook directions.
Cant change fact that dying iscomplicated.
Cant eliminate personal ambivalence.
Cant be a substitute for Discussion. Cant control health care providers.
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30 years of Research on Advance Directives
1. Most people dont do.
2. Hard to understand the forms.
3. Standard form not useful guidance.
4. People change mind.
5. Agent/proxy slightly better than clueless.
6. Health care providers clueless about the
directive.
7. Even if providers know directive exists,
its lost in space.
8. Even if in the record, its still lost in space.
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Communication is Key to Advance Planning
Not every medical decision can be anticipated
Communicate wishes, quality of life goals,values and priorities that are important
Discussions are difficult but most important forloved ones and the individual with the disease
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Guidance for Health Care Agents, Proxies
Steps in making medical
decisions
Working within healthcare system
Addressing disputes
Special challengesin medical decisions
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Advance Care Planning
Less focus on formal instructional documents
Legal focus primarily on naming a proxy
Discussion oriented (with proxy, family, healthcare providers)
More broadly focused on goals + values,spiritual questions, family matters
Less treatment focused, more on quality of life
Conversion of goals to a portable plan of care:POLST if available
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POLST Why It Is a Sea Change
Last 30 years: standardizing patient communications statutory advance directives
POLSTParadigm standardizing physicians EOL ordersin order to implement patients goals of care. Focus onhere and now, high probability crises.
POLST requires:
1. Find out patients wishes re: CPR, care goals(comfort vs. treatment), antibiotics, N&H.
2. Translate into doctors orders on visually distinct
(bright pink) med file cover sheet.3. Ensure form travels with patient.
At least 12 States have a version of POLST:CA, HI, ID, MT, NY, NC, OR, TN, UT, VT, WA, WV
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Default Surrogate Laws(Family Consent)
Range/Priority of Surrogates
Scope of Decision Making Authority
Triggers/Pre-conditions
How Disagreements are Handled
Close Friend and UnbefriendedPatient
Summary chart:
http://new.abanet.org/aging/Pages/StateLawCharts.aspx
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Make a Plan to Manage Money& Property
Planning for management of affairs whilealive helps maintain control to the
greatest extent possible Variety of legal tools Powers of Attorney
Representative Payee
Joint bank accounts Inter-vivos or Living Trusts
Advantages and disadvantages of each
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Powers of Attorney
For property
Durable since planning for incapacity
Document by which one person(principal) gives legal authority to another(agent) to act on behalf of the principal.
Generally must be signed & notarized. Governed by state law
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PoA Advantages/Disadvantages
Promotes autonomy puts you indrivers seat
Avoids guardianship
Cuts costs
Helps family members
Lack of monitoring
Unclear standards for agent conductLack of awareness of risks
Broad decision-making authority
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Types of POA Abuse
In creating of the POA (power given, not taken)
Incapacity at execution
Forgery/Fraud/Misrepresentation
Undue influence
Implementing POA (agent is a fiduciary)
Transactions exceeding intended authority
Transactions conducted for self-dealing Transactions contravening principals expectations
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Brooke Astors Son Guilty in Scheme
to Defraud Her
Wealthy NY socialite Brooke Astor, Alzheimers, age 105
Estate more than $180 million
Son served as power of attorney
Gave self unauthorized raise of $1 million Other counts of financial exploitation
Neglected mothers care while enriching self
Exemplifies financial
elder abuse
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Uniform Power of Attorney Act
Clear statement of agents duties
Act in accord with principals expectations, bestinterests
Stringent requirements for exercising hotpowers likely to dissipate property or alterestate plan
Third party refuse to honor if suspect abuse
Liability of agents who commit malfeasance
See www.nccusl.org .
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Other Options
Joint Bank Accounts: pros & cons Provides easy access to funds to pay bills Joint owners have complete access to all funds Funds may be available to pay joint owners debts Upon death surviving joint owner may become sole
owner regardless of will
Inter-vivos orLiving Trust: pros & cons Legal arrangement created by contract Holds property for the benefit a person or persons Can provide for management of assets during
incapacity, avoid probate and provide for care ofminors or disabled persons
Can be expensive to draft, to transfer property into thetrust and to pay a professional trustee (if used)
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Other Options
Representative Payee
If receive SSA, civil service, railroad retirement, VAbenefits, agency may require individual to be
appointed as a representative payee
Once appointed, the rep payee has authority tomanage the relevant income -- but not other income orassets.
Rep payee may have to file an annual report (SSA)
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Other Key Planning Considerations
Develop succession plan of a business Including power of attorney to run a business and buyout agreements
Consider other public benefits, if appropriate Including food stamps, state prescription drug benefit programs, energy
assistance
Prepare will Legal document that provides for distribution of some or all property at
death If a single parent of a minor or disabled child, can designate a guardian
of the child
Plan for care of Dependents Nominate or appoint a guardian for minor/disabled child Arrange for financial support for minor/disabled child
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Guardianship
Individual (or agency) appointed by court(probate, general jurisdiction) . . . .
With power and duty to make personal and/or
financial decisions . . . . On behalf of another person . . .
Whom court determines lacks decisional
capacity. Terminology guardian conservator and
more
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Guardianship:
A Double-Edged Sword Parens patriae roots of guardianship
Guardianship unpersons individual (Associated
Press, 1987) Loss of fundamental rights
Inherent Tension
Between rights and needs
Between autonomy and beneficence
Between self-determination and protection
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51 State Guardianship Laws;
Variability in Practice
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How is a Guardian Appointed?
Any person files petition
Notice, possible appointment of counsel,
guardian ad litem, court visitor Hearing
Judicial order plenary or limited
Bond
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Principle of Least Restrictive Alternative
Growing use of alternatives to guardianship
Representative payee
Power of attorney
Trust Supports such as money management
Guardianship as LAST RESORT
Enactment of limited guardianship provisions
Use of substituted judgment standard ofdecision-making
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Guardian Accountability Who Guards the Guardians?
Reports & AccountsProtection of AssetsCourt Review of Reports& Accounts
Investigation,Verification& SanctionsGuardian Training/Assistance
Funding for MonitoringGuarding the Guardians:PromisingPractices for
Court Monitoring,
AARP/ABA (2007)
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Conclusion
When faced with diagnosis like Alzheimersdisease, its critical to get financial and legalaffairs in order.
Communicate with family, close friends andtrusted legal/financial advisors.
Understanding options and making informeddecisions can help maximize control andminimize anxiety at a difficult time.