Upload
harry-strickland
View
222
Download
5
Tags:
Embed Size (px)
Citation preview
Advance Care Planning:
Making Advance Directives Work
Today’s Goals
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
Quinlan, Cruzan – Upheld patient’s rights, as interpreted by the family, to refuse ventilators and feeding tubes as life-sustaining 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
PSDAMedical Institutions Must:
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
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
Who decides? Agent (Power of Attorney for
Healthcare) Surrogates Families
Health Care Surrogacy Act
Lists a chain of command when no designated HCPOA or Living Will 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
By what Standard? Substituted judgment
(proxy/agent/surrogate) Prior expressed wishes of previously
competent patient = best evidence “Clear and convincing evidence” std
Best Interests Standard (Cruzan) Ratio of benefits and burdens
Ethical/Legal Underpinnings
Self Determination Patient Autonomy Informed consent
Must have decisional capacity Understanding of right to refuse treatment Medical implications Respects right of self-determination and well-
being of patient Benefits/burdens
Understanding alternatives and their implications
Ethical/Clinical Implications
Goals of care Can change with new diagnosis, change
in prognosis, etc. Values and Beliefs
Individual systems that affect healthcare decisions (e.g. religion/spirituality)
What gives life meaning
Other Important Considerations
Culture Ethnicity Personal Experience Respect for person’s right to choice
(do no impose personal values or beliefs)
Illinois Health Care Decision-Making Laws
According to Charlie Sabatino, Director of ABA Commission on Law & Aging in D.C., IL compares favorably with other states.
Illinois: 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
Health Care Power of Attorney Living Will Uniform DNR Mental Health Treatment Preference
Declaration
Other Advance Directives
“Five Wishes” www.agingwithdignity.org
POLST (Physician Orders for Life Sustaining Treatments) paradigm-blended document (Oregon and other states)
Ideal World of Advance Directives
o Everyone over 18 completes AD’s on a timely basis with full understanding of medical implications of decisions
o Everyone shares their AD’s with those who need to know about them (proxies)
o The AD’s are regularly reviewed and updated
o AD’s are always accessibleo Physicians and healthcare providers fully
understand individual’s intent/wishes based on AD document
Real World of Advance Directives
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
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
Major Trajectories near Death-Joanne Lynn, MD
Rand Corporation
Trajectories of Eventually Fatal Chronic Illnesses
A
C
A Different ParadigmAdvance Care Planning
1. Give priority to naming a proxy – Power of Attorney for Healthcare
2. Emphasize ‘the conversation’ – guide patients to discuss their values and beliefs as they relate to healthcare treatments
3. Based on health status 4. Reflection, understanding, discussion5. Share information and educate proxies to their
responsibilities6. Initiated as early as possible for all 18 and over7. Advance Directive viewed as a covenant
Respecting Choices®Advance Care Planning Model
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
ACP facilitator skills training emphasizing communication skills
Assists with identification of appropriate agent Discussions based on health status:
healthy, chronic progressive disease and long-term care residents and those who may die in 12 months
Uses a team competency-based approach-referrals to healthcare provider
For SWs, RNs, chaplains, lawyers, volunteers
Facilitated Advance Care Planning Conversation
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
•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
The Five Promises of an Effective Advance Care Planning Process
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
Someone to Trust
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
Key “upstream”contact on advance directives
Help think through choice of agento 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
Prepares client who is requesting completion of an advance directive 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
Reviews clients questions and concerns
ACP Protocol for Attorneys
If the client is a relatively healthy adult, assists in: 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
Refers the client to an appropriate healthcare provider and/or advance care planning facilitator in the community when: 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
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)
When to do, when to review
Any adult, 18 yrs or older Review at 5 D’s per Charlie Sabatino
1. Each new decade2. Each death of family/friends3. Divorce4. New diagnosis5. Significant decline in health
Resources
ABA Commission on Law and Agingwww.abanet.org/aging/publicationsClick on online publications (consumer
and professional) National Hospice and Palliative
Organization state-specific advance directives
www.caringinfo.org
SOMEONE TO TRUST
Karen Long, Program DirectorSomeone to Trust312-636-9261 [email protected] 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