Transcript Someone To Trust - Illinois Pro Bono

Advance Care Planning:
Making Advance
Directives Work
Today’s Goals
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Review history of advance directives
and their ethical underpinnings
Discuss why advance directives do
not work as originally intended
(healthcare perspective)
Successful advance care planning
model
Attorneys’ role in advance care
planning
A Brief History of Advance Directives
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Quinlan, Cruzan – Upheld patient’s rights,
as interpreted by the family, to refuse
ventilators and feeding tubes as lifesustaining treatment
Schiavo – Family battle concerning who
knows patient’s wishes decided by the
state court
Patient Self-Determination Act (1991) –
Requires medical institutions to inform
patients of their rights about medical
decision making
PSDA
Medical Institutions Must:
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Inform patients about their right to accept
or refuse medical treatment (informed
consent)
Ask patients if they have an advance
directive
Educate staff and community about ADs
Never discriminate on the basis of
whether or not a patient has an AD
Maintain policies about patients’ rights to
refuse treatments
Advance Directives
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A legal contractual model – primary
obligation is to uphold a “decisional”
person’s right of self-determination
Wishes are completed abstractly –
trying to predict future scenarios
Designed to assert negative rights
and to satisfy legal fears of the
medical system
Making Decisions for Incapacitated
Patients
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Who decides?
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Agent (Power of Attorney for
Healthcare)
Surrogates
Families
Health Care Surrogacy Act
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Lists a chain of command when no
designated HCPOA or Living Will
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HCPOA
Patient’s guardian of the person
Patient’s spouse
Any adult son or daughter of the patient
Any adult grandchild of the patient
A close friend of the patient
Patient’s guardian of the estate
Making Decisions for Incapacitated
Patients
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By what Standard?
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Substituted judgment
(proxy/agent/surrogate)
Prior expressed wishes of previously
competent patient = best evidence
 “Clear and convincing evidence” std
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Best Interests Standard (Cruzan)
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Ratio of benefits and burdens
Ethical/Legal Underpinnings
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Self Determination
Patient Autonomy
Informed consent
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Must have decisional capacity
Understanding of right to refuse treatment
Medical implications
Respects right of self-determination and wellbeing of patient
Benefits/burdens
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Understanding alternatives and their
implications
Ethical/Clinical Implications
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Goals of care
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Can change with new diagnosis,
change in prognosis, etc.
Values and Beliefs
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Individual systems that affect
healthcare decisions (e.g.
religion/spirituality)
What gives life meaning
Other Important Considerations
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Culture
Ethnicity
Personal Experience
Respect for person’s right to choice
(do no impose personal values or
beliefs)
Illinois Health Care Decision-Making
Laws
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According to Charlie Sabatino, Director of
ABA Commission on Law & Aging in D.C.,
IL compares favorably with other states.
Illinois:
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Avoids mandatory forms
Gives precedence to proxy’s decision
Authorizes default surrogates without major
limitations, including “close friends”
But lacks a single comprehensive statute
Illinois Advance Directives
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Health Care Power of Attorney
Living Will
Uniform DNR
Mental Health Treatment Preference
Declaration
Other Advance Directives
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“Five Wishes”
www.agingwithdignity.org
POLST (Physician Orders for Life
Sustaining Treatments) paradigmblended document (Oregon and
other states)
Ideal World of Advance Directives
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Everyone over 18 completes AD’s on a
timely basis with full understanding of
medical implications of decisions
Everyone shares their AD’s with those
who need to know about them (proxies)
The AD’s are regularly reviewed and
updated
AD’s are always accessible
Physicians and healthcare providers fully
understand individual’s intent/wishes
based on AD document
Real World of Advance Directives
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Estimated that <20% of Chicagoans have an
advance directive (25-30% nationally)
AD’s are vague, ambiguous or not applicable to
situation (particularly the living will)
Patients confused over medical terminology,
implications of treatment options and documents
Focus on signing document without adequate
discussions on values, beliefs and goals of care
Documents inaccessible – 3:00 a.m. Did not share
documents or have discussions with family,
physician, etc.
Often completed under stressful circumstances
without full understanding of implications of
treatment options
How We Die
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In institutions (80%)
Different trajectories for different
diseases and conditions-most of us
from frailty (avg. 9 conditions)
Often difficult to predict when death
will occur
50% of people most likely will be
unable to participate in eol decision
Trajectories of Eventually Fatal Chronic Illnesses
Major Trajectories near Death-Joanne Lynn, MD
Rand Corporation
High
A
Organ System Failure
Function
Cancer
Function
High
Low
Low
death
death
Time
Time
Dementia/Frailty
Function
High
death
Low
Time
C
A Different Paradigm
Advance Care Planning
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Give priority to naming a proxy – Power of
Attorney for Healthcare
Emphasize ‘the conversation’ – guide patients to
discuss their values and beliefs as they relate to
healthcare treatments
Based on health status
Reflection, understanding, discussion
Share information and educate proxies to their
responsibilities
Initiated as early as possible for all 18 and over
Advance Directive viewed as a covenant
Respecting Choices®
Advance Care Planning Model
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Started in 1991 as a comprehensive,
community-wide care planning program
at Gundersen Lutheran in La Crosse, WI
By 1996, 85% of residents who had died
there had written Advance Directives,
96% were in the medical record, and
98% of the time their wishes were
honored as death neared
ACP Facilitator Skill Development
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ACP facilitator skills training emphasizing
communication skills
Assists with identification of appropriate agent
Discussions based on health status:
healthy, chronic progressive disease and longterm care residents and those who may die in 12
months
Uses a team competency-based approachreferrals to healthcare provider
For SWs, RNs, chaplains, lawyers, volunteers
Facilitated Advance Care Planning
Conversation
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Change the question: Who would
you want to make your healthcare
decisions if you could not?
What gives life meaning?
Life experience
Values and beliefs
Cultural and spiritual considerations
The Five Promises of an Effective Advance
Care Planning Process
•Promise #1: We will initiate conversations
•Promise #2: We will provide assistance
•Promise #3: We will make sure plans are
clear
•Promise #4: We will maintain and retrieve
plans
•Promise #5: We will appropriately follow plans
Someone to Trust Initiative
June 2006
 Coalition of 60+ organizations
(Office of the IL Attorney General, IL State
Medical Society, Metropolitan Chicago
Healthcare Council, Chicago Department
of Public Health, etc)
 Goal-Improve the use of advance
directives in the Chicago metropolitan
area and create a healthcare system that
supports advance care planning
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Someone to Trust
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Train facilitators
Educating healthcare professionals
Modifying/adapting materials for
Chicago’s diverse audiences
Developing educational programs for
volunteers, attorneys, etc
Reviewing statutory pre-hospital DNR,
durable power of attorney for healthcare
form
Advance care planning guidelines for
hospitals
The Role of the Attorney
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Key “upstream”contact on advance
directives
Help think through choice of agent
Refer individuals to healthcare provider to
answer medical questions
Make sure information is shared as
appropriate: physician, agent, family
Make sure documents clear and
completed correctly
ACP Protocol for Attorneys
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Prepares client who is requesting
completion of an advance directive
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Sends client information on acp and
advance directives
Asks client to come prepared with
questions after reviewing information
Suggests client bring the person likely
to be chosen as healthcare agent to
meeting
ACP Protocol for Attorneys
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Reviews clients questions and
concerns
ACP Protocol for Attorneys
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If the client is a relatively healthy
adult, assists in:
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Selecting a surrogate decision-maker
Determining clients goals for medical
care if they were to permanently lose
their ability to know who they were or
who they were with
Determining if the client has any
religious/spiritual/cultural beliefs that
might influence treatment
ACP Protocol for Attorneys
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Refers the client to an appropriate
healthcare provider and/or advance care
planning facilitator in the community
when:
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The client has questions or concerns re health
problems, future implications of their health
problem, potential options for future medical
care
Client has significant health problems and has
never had an acp discussion with healthcare
provider
ACP Protocol for Attorneys
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Provide necessary follow-up after
assisting in the completion of the
advance directive
Provide client with a list of people with
whom they should discuss their plan
(physician, agent, family and friends)
 Discuss who the advance directive
should be sent to (physician, hc
institution, agent)
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When to do, when to review
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Any adult, 18 yrs or older
Review at 5 D’s per Charlie Sabatino
1. Each new decade
2. Each death of family/friends
3. Divorce
4. New diagnosis
5. Significant decline in health
Resources
ABA Commission on Law and Aging
www.abanet.org/aging/publications
Click on online publications
(consumer and professional)
 National Hospice and Palliative
Organization
state-specific advance directives
www.caringinfo.org
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SOMEONE TO TRUST
Karen Long, Program Director
Someone to Trust
312-636-9261
[email protected]
Someone to Trust is an independent
program of the Institute of Medicine of
Chicago
Someone to Trust is funded by the
Retirement Research Foundation and the
Nathan Cummings Foundation