advance care planning: making advance directives work

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 someonetotrust@iomc.orgSomeone 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