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: charles.sabatino@americanbar.org