Vermont Bar Association End of Life Conversations: Enhancing Communication and Advance Care Planning

Wednesday May 27, 2015 – 8:30 AM to 1:00 PM Champlain College, Perry Hall

4.25 MCLE General Credits

Program description: Advance care planning is an ongoing process of communication that can provide families with greater confidence in making health care decisions. This continuing education program will share helpful approaches for communicating with clients and their families and offering guidance through this process. With advice and perspectives from the medical community, the program will focus on building knowledge and strategies to help clients of any age or health status. The program will specifically address:

• Understanding how palliative care and hospice benefits families • Prompting discussions and encouraging the conversation • Minimizing crisis situation decision making • Choosing the appropriate tools and resources to support advance care planning

Speakers:

1. Jaina Clough, MD – Hospice Medical Director, Visiting Nurse Association of Chittenden & Grand Isle Counties and University of Vermont Medical Center Adult Primary Care Medical Practice (Williston); Assistant Professor of Medicine, University of Vermont Medical School

2. Cindy Bruzzese, MPA, Executive Director, Vermont Ethics Network 3. Christine Werneke, MS, Community Coordinator of Start the Conversation

Initiative and Vice President of Business Development and Marketing, VNA of Chittenden & Grand Isle Counties

4. Sarah G. Tischler, Esq., Langrock Sperry & Wool, LLP

Schedule: 8:00 – Registration and Refreshments 8:20 – Welcome and Introductions 8:30 – End of Life Moments 8:45 – Hospice and Palliative Care 9:45 – Start the Conversation Initiative 10:30 – break 10:45 – audience activity 11:00 – Advance Care Planning 12:30 – Q & A panel 1:00 - Adjourn

Roz Chast, a New Yorker cartoonist since 1978, author of the graphic memoir Can’t We Talk About Something More Pleasant?

A public education initiative by VNAs of Vermont, in partnership with Vermont Ethics Network

START THE CONVERSATION

"For me, dying - it's very enlightening and certainly rewarding," David Plant (left) tells Frank Lilley. "Look at the opportunity to talk, for example. It's just incredible."

NPR STORYCORPS

WHY IS IT IMPORTANT TO START THE CONVERSATION?

Increase the understanding of end-of-life care options.

Encourage individuals and families to talk to each other and their doctors about their end-of-life wishes.

Increase the use of Advance Directive forms to document wishes.

IT’S A GIFT

Maria J. Silveira, M.D., M.P.H., Scott Y.H. Kim, M.D., Ph.D., and Kenneth M. Langa, M.D., Ph.D.. Advance Directives and Outcomes of Surrogate Decision Making before Death, N Engl J Med 2010; 362:1211-1218

IMPORTANT FACTS TO KNOW

Health care agent made decisions in 65% of the cases.

IMPORTANT FACTS TO KNOW Approximately 8 out of 10 Americans would prefer to die at home. Despite this fact, only 20% die at home, 60% die in hospitals, and 20% in nursing homes.

Nearly 70% of Americans reported having concerns about end-of-life care.

Less than 3 out of 10 Americans have an Advance Directive.

70% of Americans reported they are “not at all knowledgeable” about Palliative Care.

Few Americans understand end-of-life care options or how they’re funded, and fewer still have discussed their desires with their doctor and family.

IMPORTANT FACTS TO KNOW

WHAT ARE THE BARRIERS? Lack of awareness

Confusion

Denial

Cultural differences

Others? What do you see?

PROGRAM COMPONENTS > StartTheConversationVT.org > Brochures, Fact Cards, and

Conversation Guide > Community Workshops > Checklists

WHO THE PROGRAM IS FOR Someone who wants to give their family the gift of

having their decisions made.

An adult child who wants to be certain of their parents’ wishes.

A young person starting a family who needs to make decisions in case of an unexpected injury or illness.

These materials are NOT designed to support someone with a terminal illness or who is facing end-of-life care imminently.

WAYS TO USE THE RESOURCES

Offer the Conversation Guide, or specific materials, as a resource for your clients.

Use materials as conversation tools during your meetings with clients.

Host a workshop for your clients as a way of introducing the discussion.

REFERENCES 2011 Public Opinion Research on Palliative Care, Center to Advance Palliative Care. Rao, J., Anderson, L., Lin, F., Laux, J., Completion of Advance Directives Among U.S. Consumers. Am J Prev Med 2014;46(1):65–70. Benson WF and Aldrich N. Advance Care Planning: Ensuring Your Wishes Are Known and Honored If You Are Unable to Speak for Yourself, Critical Issue Brief, Centers for Disease Control and Prevention. 2012. www.cdc.gov/aging.

Enhancing End of Life Communication and Advance Planning

Readings and Resources – A short list

READINGS

Being Mortal, Atul Gawande (2014)

How We Die, Sherwin B. Nuland, M.D.

Can We Talk About Something More Pleasant?, Roz Chast

Last Rights: Rescuing the End of Life from the Medical System, Stephen P. Kiernan

Mori M, Ellison D, Ashikaga T, McVeigh U, Ramsay A, Ades S (2012) In-advance end-of-life discussion and the quality of inpatient end-of-life care: a pilot study in bereaved primary caregivers of advanced cancer patients. Supportive Care in Cancer Article 10.1007/s00520-012-1581 http://link.springer.com/article/10.1007/s00520-012-1581

AGENCIES/RESOURCES

Vermont Ethics Network www.vtethicsnetwork.org

Visiting Nurse Association www.vnacares.org

Wake Up to Dying www.wakeuptodyingproject.org

Death Over Dinner www.deathoverdinner.org

Death Café www.deathcafe.com

Champlain Valley Agency on Aging www.cvaa.org

VT Alzheimer’s Association http://www.alz.org/vermont/

VT Parkinson’s Disease Association http://parkinsonsvt.org/

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ADVANCE CARE PLANNING: A QUALITY IMPERATIVE FOR MEDICAL DECISION-MAKING

Cindy Bruzzese, MPAExecutive Director – Vermont Ethics Network

Background: The Ethics Perspective

Fundamental Principles of Bioethics:

• Respect for Autonomy (self-governance)

• Nonmaleficence (do no harm)

• Beneficence (do good)

• Justice (fairness)

Advance Care Planning = Preventive Ethics

(Beauchamp and Childress, 1994)

Quinlan (1976): Father’s right to withdraw LST from his daughter (an incompetent adult in PVS -not brain dead) and to be appointed her guardian to that end.

Case Law: Decisions for Incompetent Patients

• Court concluded that Karen’s right of privacy may be asserted in her behalf by her guardian and family using substituted judgment standard.

• In response to Quinlan, states began to pass laws providing for the use of advance directives. Many see AD’s as the gold standard in respecting patient autonomy.

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Claire Conroy (1985): Circumstances under which life sustaining treatment may be withheld or withdrawn from an

Decisions for Incompetent Patients

withheld or withdrawn from an incompetent elderly, nursing home resident with severe and permanent mental/physical impairment and limited life expectancy.

• Substituted Judgment Standard-• Subjective Test: Actual knowledge of what the patient

would choose if able (evidenced via written AD/DPOA- HC)

• Best Interest Standard

Conroy (continued)

• Best Interest Standard• Limited Objective Test – Some trustworthy evidence of

what the patient would have wanted and burdens of txoutweigh benefits such that suffering would be prolonged

• Pure Objective Test – Net burdens of the patient’s life with tx clearly and markedly outweigh the benefits of continued life

FACTS

• 90% of people say that talking with their loved ones about end-of-life

i i

• 27% have actually done so

care is important

• 82% of people say it is important to put their wishes in writing

• 23% have actually done so

Sources: Conversation Project National Survey (2013); and Survey of Californians by the California HealthCare Foundation (2012).

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FACT

• 80% of people say that if they were seriously ill they • 7% report having seriously ill they would want to talk to their doctor about end-of-life care

p ghad an end-of-life conversation with their doctor

Source: Survey of Californians by the California HealthCare Foundation (2012)

Institute of Medicines’ Dying in AmericaReport

Improving Quality and Honoring Individual Preferences Near the End fof Life

Released: September, 2014

www.iom.edu/Reports/2014/Dying-In-America-Improving-Quality-and-Honoring-Individual-Preferences-Near-the-End-of-Life.aspx

Institute of Medicines’ Dying in AmericaReport

“The IOM committee believes a person-centered family-

i t d h th t oriented approach that honors individual preferences and promotes quality of life through the end of life should be a national priority.”

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Dr. Atul Gawande: Being Mortal

Common Themes

• A need for advance care planning

• Improve conversations between patients and health care professionals

• Focus on shared medical decision-making that is informed

• Improve systems for documenting wishes for EOL care

• Provide education to health care professionals and patients, and encourage accessibility to advance care planning opportunities

IOM Report OverviewThe IOM Report is divided into five major areas:

• Delivery of person-centered, family-oriented care

• Clinician-patient communication and advance care Clinician patient communication and advance care planning

• Professional education and development

• Policies and payment systems

• Public education and engagement

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Key Recommendations• Develop quality standards for clinician-patient

communication and advance care planning

• Strengthen provider training for all clinicians in palliative care knowledge and skills -- including advance care care knowledge and skills including advance care planning

• Fact-based public education to encourage advance care planning and shared, informed medical decision-making; the “life-cycle” model for advance care planning

Key Recommendations• Ensure care plan supports COLST orders (where

appropriate)

• All insurers should cover comprehensive care for individuals with advanced serious illness who are near individuals with advanced serious illness who are near the end of life

• All insurers should integrate the financing of medical and social services to support quality care consistent with patients’ values and preferences

ADVANCE CARE PLANNING IS A PROCESS – TAKING STEPS

A Step-Wise Approach

• Step 1: Appoint a Health Care Agent

• Step 2: Complete an Advance Directive with information about treatment goals and health care priorities

• Step 3: Develop a COLST to ensure that any limitation of treatment preferences will be respected across care settings

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Available Tools

Medical Decision-Making Tools

• Appointing a Health Care Agent Form

• Vermont Advance Directive for Health CareIncludes Proxy and Treatment Directives (short & long forms)

• Vermont Advance Directive Registry

• DNR/COLST Orders

Step 1– Appointing a Health Care Agent

• Designate a health care decision-maker(s)Health Care Agent(s)/Durable Power of Attorney for Health Care

P id i f i b h h • Provide information about others who may and/or may not be consulted about medical decisions; general health care goals and contact information for primary care provider

• Signature & witnessing

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NEW: Form for Appointing an Agent

Step 2: Vermont Advance Directive for Health Care – Short Form

• Still provides section to appoint a health care agent (Part 1)(ie. Proxy Directive/Durable Power of Attorney for)

• Provides expanded opportunity for information about health p pp ycare goals, values & preferences for treatment (Parts 2 &3)

(i.e. Treatment Directive)

• Allow for information to be provided about organ donation,funeral, cremation and burial arrangements (PART 4)

• Signature & witnessing (PART 5)

Taking Steps Booklet – AD Forms

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Advance Directive Long Form

• A more comprehensive form that allows for more specificity if that is desired

• Has 9 parts instead of 5

• Includes: Mental Health Considerations (i.e. emergency involuntary

treatment, electro-convulsive therapy) Waiver of Right to Request or Object to Treatment (Ulysses

Clause)

The Vermont AD Registry (VADR)

• VADR is free for Vermont residents

• Electronic storage for Advance Directive documents

• Hospitals are required to check the registry when a patient who lacks capacity is brought in

• Form for submitting documents to registry & for making changes once a document has been submitted• Registry Agreement• Authorization to Change Form

Registry Agreement

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Step 3: Limitation of Treatment Orders

• POLST (Physician Orders for Life-Sustaining Treatment)• National: outpatient/transportable orders

• VERMONT COLST (Clinician Orders for Life-(Sustaining Treatment)• Vermont adaptation of POLST; Designed to be portable

across care settings

• MOLST (Medical Orders for Life-Sustaining Treatment)• New York & Massachusetts equivalent of POLST

Old Form

Does not meet the statutory requirement for a qvalid DNR order as there is no place to document informed consent, etc.

Page One: Code Status

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Page Two :

Mechanical ventilation

Hospital transfer

Antibiotics

Tube feedings and TPN

Goals of care

Vermont DNR/COLST

• As of July 1, 2011 an out-of-hospital DNR/COLST order MUST be documented on the Vermont DNR/COLST form.

• Inpatient DNR/COLST orders can be documented in a facility specific manner.

• DNR/COLST orders are NOT mandatory for nursing home admission.

DNR/COLST Orders & Advance Directives

• DNR/COLST orders are NOT a replacement for Advance Directives.

• AD’s provide important information beyond that of DNR and limitations of treatment. AD’s do not require qinformed consent, or discussion of risks, benefits and alternatives.

• DNR/COLST is intended to be used in conjunction with AD’s for those individuals for whom it is medically appropriate (such as people living with chronic and/or life limiting illness or those for whom ).

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DNR/COLST and VADR

• People have the right to either accept or decline medical interventions as an expression of their autonomy. This means they also have the right to change their mind.

• DNR/COLST should be in the EMR not the VADR. If a patient changes his/her mind (i.e. changes from DNR to wanting CPR), all they have to do is tear up the order, take it off their fridge or remove their DNR identification. The Registry is not nimble/responsive enough to accommodate immediate changes.

ACT 39 and Advance Directives

• Advance Directives CANNOT be used to authorize an agent to obtain a lethal prescription for a patient to hasten their death after that patient has lost capacity.

• No one but the patient may exercise the right to hasten his or her own death.

• A request can only be made by the individual when s/he is capable of making an informed decision and meets the necessary eligibility requirements as outlined in the law.

Policy Updates

• S.108 – An act relating to repealing the sunset provisions pertaining to patient choice at the end of life (Act 39).choice at the end of life (Act 39).

• S.62 – An act relating to surrogate decision-making for DNR/COLST.

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Q ti ?Questions?

www.vtethicsnetwork.org