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Making Your Wishes Known – Advance Care Planning
And the Legal Landscape
Charles P. Sabatino, JD
ABA Commission on Law and Aging
Consumer Voice Conference
November 16, 2014
. . .Spirituality / Family / Workplace. . .
Institutional
Innovation
Financing
Systems
Professional
Education
Public
Education
Professional
Standards &
Guidelines
Law and
Regulation
Sources of Law & Interpretation of Law
Federal & State Constitutions
Statute & regulation (Fed & State)
Common Law (principles established
through case adjudication)
Professional standards/guidelines/ statements (by recognized authorities)
“Custom & Practice”
Birth of the Living Will
• Luis Kutner, civil rights lawyer, coined the term “Living Will” in a law review article in 1969.
• First statute: California 1976 created a Directive to Physicians, better known as a Living Will.
• Definition: a document that spells out one’s wishes and preferences about end-of life care.
Two key legislative characteristics:
•Carrot for physicians: statutory immunity. •Protective measures: legal formalities and procedural protections.
A Quick Legislative History
of Advance Planning
1960s 1970s 1980s 1990s 2000s 2010s
Federal Health Decisions Law?
• 1990 Patient Self-Determination Act
• 1996 Military Advance Directives
10 USC Sec. 1044c (pre-empts state law!)
• 2005 - (S. 653 – Bill for the Relief of the Parents of Terri
Schiavo)
• Regulations? (e.g., Nursing Home and HIPAA regs)
Defers to state Advance Directive laws
• Medicare Improvements for Patients and Providers Act
of 2008 (MIPPA) – Welcome to Medicare exam
• 2009 – CMS turnabout on ACP counseling.
State Statutory Landscape Today
Default Surrogate Laws
Health Care Advance Directives
Health Care DPAs
Living Wills
Out-of-Hospital DNR Laws
Organ Donation Laws
Guardianship Laws
POLST
Any Trends?
• In the 1970s -1980s, states generally
enacted multiple laws: Living Will, DPA for
Health Care, with overlap from traditional
DPAs, & consent laws.
• Today about half the states have
combined/comprehensive Advance Directive
laws and simplified (a little).
• But still much variation in detail, especially
forms.
• Movement toward a communications model.
Conventional Legal
Transactional Approach Focus: mandatory legal formalities, procedures,
and standardization to ensure voluntary, knowing & competent execution & implementation--
1. Statutory forms
2. Required disclosures
3. Prescribed phrases
4. Witnessing rules
5. Agent/proxy limitations
6. Diagnostic and certification requirements
7. Limitations on surrogate authority
8. Notice requirements
30 years of research on the legal
transactional approach…
1. Most people don’t do.
2. Hard to understand the forms.
3. Standard form not useful guidance.
4. People change their minds.
5. Agent/proxy slightly better than clueless.
6. Health care providers clueless about the
directive.
7. Even if providers know directive exists, it’s
lost in space.
8. Even if in the record, it’s still lost in space.
What ADs Can’t Do
1. Can’t provide cookbook directions.
2. Can’t change fact that dying is complicated.
3. Can’t eliminate personal ambivalence.
4. Can’t be a substitute for Discussion.
5. Can’t control health care providers.
Communications Approach “Advance Care Planning”
1. Less focus on legal formalities – many routes to the same end.
2. Legal focus primarily on naming a proxy
3. Discussion focused (with proxy, family, health care providers re values and goals)
4. Less treatment focused
5. Developmental in nature
6. Conversion of goals into a portable plan of care: POLST
Signs of Change
• 1993 Uniform Health-Care Decisions Act
• Trend toward simplification of state laws
• Five Wishes example – 33 to 42 states
(1997 – 2014)
• “Oral” advance directives - 15 states
• Growth of workbook approaches » See “Advance Care Planning Tools That Educate, Engage, and
Empower” at:
http://ppar.oxfordjournals.org/content/24/3/107.full?keytype=r
ef&ijkey=p96ENglK6x0xhUc
www.agingwithdignity.org
Workbook Approaches
• See Resources Handout
• Newly available after years in Limbo:
Planning for Future Health Care Decisions... My Way
by the Dept. of Veterans Affairs, https://drive.google.com/file/d/0ByDV0aU7huD8ZFo5UVA1cGdCYUU/view
?pli=1
Time to review ACPs…
When any of the 5 D’s occur: 1. You reach a new DECADE
2. You experience a DEATH of family or friend
3. You DIVORCE
4. You receive a new DIAGNOSIS
5. You have a significant DECLINE in
your condition as measured by
Activities of Daily Living (ADLs)
17
Individual’s Wishes/ Goals of Care
Rx Orders in Chart
?
Know that an advance directive does not equal a plan of care
The POLST Paradigm
An additional, systemic step to bridge gap between
patient’s goals/preferences and implementation
of an actual plan of care for the here and now.
Four actions required:
1. Discussion: Learn patient’s goals/wishes re:
CPR, care goals (comfort vs. treatment),
N&H, etc.
2. Translate into doctors orders on visually
distinct medical file cover sheet.
3. Must follow patient across care settings.
4. Review 18
19
Developing Programs
National POLST Paradigm Programs
Endorsed Programs
No Program (Contacts)
*As of January 2014
Mature Programs
Regionally Endorsed Program
www.polst.org
Programs That Do Not Conform to POLST
Requirements
Circumstances have changed but the question remains the same as in 1982:
“How to foster a relationship between patients and professionals characterized by mutual participation and respect, and by shared decision-making”
President’s Cmsn for the Study of Ethical Problems
in Medicine & Biomedical & Behavioral Research
My email: [email protected]