ADVANCE CARE PLANNING The Health Care Professional’s Role Susan A. Andresen, Ed.D., HS-BCP J. Paul...

ADVANCE CARE PLANNINGThe Health Care Professional’s Role

Susan A. Andresen, Ed.D., HS-BCPJ. Paul Newell, M.D.

Presentation Goal and Objectives Goal:

Increase physician knowledge and confidence related to the role of advance care planning and advance directives in end-of-life care

Objectives: Understand and name the barriers to

obtaining and implementing advanced directives.

Recognize an optimal process and model for developing advanced directives.

Understand the physician's critical role in implementing an effective process.

7 August 2014Dying Well 2

“Can’t We Talk About Something More Pleasant?” Roz Chast



How comfortable are you with your knowledge of advance care planning and advance directives? Very So-So Not at all

Christina has suffered from cardiovascular pulmonary disease for several years. She has designated her daughter as her Health Care Agent. During a hospital stay, Christina's physician approaches her to discuss a potential medical treatment. Before Christina can respond, her daughter instructs the physician to do everything he can to treat her mother How should the physician respond?


How many of you have had experience in assisting patients in making difficult decisions about their medical care?


What is your comfort level with discussing advance care issues with patients and their families? Very So-So Not at all


CONSIDER THIS

AHRQ, 2003 Less than 50 percent of the severely or

terminally ill patients studied had an advance directive in their medical record.

Only 12 percent of patients with an advance directive had received input from their physician in its development.

Between 65 and 76 percent of physicians whose patients had an advance directive were not aware that it existed.


AND CONSIDER THIS

2010 survey: 4,188 physicians; Journal of Cancer online

65% would discuss prognosis with 4 to six months to live

44% DNR status 26% hospice 21% preferred site of death Reluctance to talk about important

EOL issues as long as patients are feeling well

Would rather wait until symptoms worsened or there were no more treatments to offer


What do you believe to be the common barriers to effective conversations about end of life issues?


Categories of Barriers

Emotional Social and Cultural Legal and Economic Medical Training and

Environment


Barriers to Advance Care Planning:Social and Emotional

Too busy; Too young; Don’t feel the need Too hard to talk about it: Patients AND

Professionals Assumption that loved ones know our wishes Medical and legal terms confusing Confusion between financial and health

planning processes Think an attorney is needed Fear document can’t be changed Disability and right to life communities

struggle


From The Quest to Die with Dignity

"It brings sadness on me to talk about losing a loved one, so I don't talk about it. I don't want to ruin my day; I don't want to ruin my week; I don't want to ruin my year. And it turns into a lifetime."

7 August 2014DIFFICULT BUT NOT IMPOSSIBLE 13

Barriers to Advance Care PlanningBarriers to Advance Care PlanningSocial and Cultural: Phillipe Ariès, Social and Cultural: Phillipe Ariès,

19741974 Death is a social construction, evolving over time Changes occurred slowly over centuries,

attracting little notice Late nineteenth century a radical shift:

Death shameful and forbidden. Began in North America Started with sparing the dying person Morphed into avoidance of emotion and ugliness of dying

Accelerated with shift of location of dying from home to hospital: Death as technical phenomenon

During the 1960s, much study of the conditions of death in America. Death became something we can once again talk about


Barriers to Advance Care PlanningLegal Infrastructure Largely in Place

1967: First advance directive – Euthanasia Society of America

1976: In re: Quinlan, N.J. Supreme Court: Right to remove ventilator

1982: U.S. Supreme Court: Right of competent adult to refuse medical treatment

1990: U.S. Congress: Patient Self-Determination Act

1991: Oregon develops first POLST program 1993: U.S. Congress: Uniform Health Care

Decisions Act 2006: Joint Commission Standards on

Advance Directives 2010: Legislation that did not happen


Barriers to Advance Care PlanningLegal Infrastructure Insufficient

Too few people use the legal tools If used, many do not understand the forms

and the need for future decision-making Forms can’t provide good guidance

without a guide Goals and preferences for care may change Proxy often doesn’t understand the

person’s wishes Health care professionals often unaware of

AD Even when professionals know of AD,

they may ignore it


Barriers to Advance Care PlanningMedical Training and Environment

Daniel R. Tobin, M.D., Peaceful Dying,

Medical system too often lacks training and perspective

Greatest limitation of Western medicine: Refusal to acknowledge death

Few hospitals create conditions for peaceful dying; living wills ignored

Death viewed as losing the patient7 August 2014Dying Well 17

Barriers to Advance Care PlanningMedical Training and Environment Renaissance Project on Death, Dying,

and Donation, 1998 Health care providers tend to be trained to

oppose death. Physicians speak: Any death is a mistake and can be

blamed on someone Life should be prolonged for as long as

possible It's the quantity instead of the quality of

life If we're really good enough, we can keep

this death from happening


What do you experience as the consequences arising from these barriers?


Consequences for the Health Care System

Only 30% have advance directives [2013] 29.0% have health care proxy [2009] < 25% enter hospital with advance

directive [2005] Living wills have limited influence 58% die in hospital; 20% in nursing homes; 22% at home;

institutions always costlier Family:

Inconsistencies seen in quality of care Communications issues prominent Many receive unnecessary and unwanted care


And the Dilemma Goes OnA Metaphorical Tale from St. Louis, MO

St. Louis Post-Dispatch, 24 June 2012, Jim Doyle 89 year old woman with

Alzheimer’s disease Six months in hospital Multiple life-prolonging measures $1.2 million costs for hospital

alone No advance directive, living will,

or proxy Children could not agree


We Are Not Dying Well in

America


Susan is in the advanced stages of cancer. Extensive treatments for her cancer have been ineffective. Susan is in the final phase of her life. She has completed an advance directive that indicates that she does not want life sustaining treatments. She has not assigned anyone to be her Health Care Agent. Susan has been admitted to the hospital and is unconscious. While in the ICU, she stops breathing.


Questions re: Susan Scenario How does Susan's advance

directive apply in this situation? What would happen if Susan

didn't have an advance directive?

What is the likelihood that the advance directive will be ignored?


What Then Are We To Do?

Engage in Advance Care PLANNING All actions and activities that result in

decisions about the kind of health care one would want in the event of serious progressive illness or impending death

Advance care planning does not equal advance directives

Ensure a process of SHARED DECISION-MAKING – Health professional is an integral partner

Make “THE CONVERSATION” central


The ProcessShared Decision-Making That

Never Ends


Gold Standard for Advance Care Planning

Discussing and following a patient’s preferences for end-of-life care is as routine as measuring the blood pressure and asking about allergies to medicines

A genuine system change7 August 2014Dying Well 27

Tools: Discuss, Decide, Document

Three Essential Components1. A Conversation Starter2. An Individual Worksheet3. A Legal Document


The Conversation Starter-1

General Guidelines• WHO will be a part of the

conversation?• Take time on more than one

occasion• Be aware of challenging topics• Begin before a crisis occurs


A Conversation Starter-2Topics That Need to Be Covered

• General Concerns – Quality of Life• Views on Prolonging Life• Cardiopulmonary Resuscitation• Receiving Food and Water Through a Tube• Living on a Breathing Machine• Having an Incurable Brain Disease

[Alzheimer’s]• Managing Pain• Organ Donation• Thoughts About Your Death• Who Should Make Decisions If You Cannot?

[Proxy; Health Care Agent]


An Individual Worksheet

Next step in advance care planning process

Topics covered identical to those in the conversation starter

Specifics re: feelings, values, and choices Choices are important:

Yes No Try for a while: few days; few weeks; few

months Undecided

Potential guide for family and health care agent, especially if AD not completed or available


A Legal Document Basic Ingredients of the Advance

Directive: Appointment of health care agent Treatment preferences

Effective only when person cannot communicate wishes

One of two conditions: Terminal condition State of permanent unconsciousness

Witnessing/Notarization Effective date and signature What to do with the AD, once completed

and signed Changeable and Revocable


What do you know about advance care planning laws, tools and documents in your state?


Advance Care Planning Law in Missouri

Life Choices [Missouri AG] includes: Communicating about the end of life:

A life planning work sheet Advance directives forms Living wills Understanding life-sustaining

treatments Managing pain Outside hospital DNR; Hospice Care

Also: Finances; Wills; POA; Guardianship; Dealing with Body; Etc.

Durable POA for Health Care Choices requires Notarization

Advance Directive for Health Care Choices requires Two Witnesses:



http://ago.mo.gov/publications/lifechoices/lifechoices.pdf

POLST/TPOPP

Have any of you used the TPOPP form, or other POLST document?

What is its value to you and the health care system?

Is it a substitute for an advance directive?


POLST/TPOPP Is Different

Not for everyone Only for the seriously ill needing

standing orders for emergent or future care

Tells exact wishes about certain medical treatments

Is a signed medical order Goes where the patient goes For healthy patients, an advance

directive7 August 2014Dying Well 38

Steve has never had a major medical problem but has completed an advance directive that appoints his wife as his health care agent and states his preference not to receive life sustaining treatments in the event that he is at the end of a terminal illness or permanently unconscious. Steve has an unexpected heart attack at work. He arrives at the emergency room before his wife, but his advance directive is in his medical chart at the hospital.

How should the medical team respond? And why?


We Are Not Dying Well In America

How might physicians and other health care professionals improve this situation?

7 August 2014DIFFICULT BUT NOT IMPOSSIBLE 40

Potential System Changes

An Urgent Public Health Concern [2013] Patients and loved ones enabled to express

advance care preferences Health care professionals should be

reimbursed Advance care planning and directives built

into electronic systems Education and training of health care

professionals essential Champions are needed

Health care professionals can be highly influential in changing the systems within which they work.


How Health Care Systems and Professionals Can Help

People want to obtain information on advance directives from their doctors or other health care providers. Support education efforts Make routine in day to day practice Make routine in new patient intake Provide appropriate materials to patients Encourage the conversation Be able and willing to answer questions Enter advance directives into the medical

record Appoint office staff member(s) to manage


The Last WordsSomeone who completed an AD “It’s a gift! If you discuss all of this ahead

of time with very clear minds, and hearing exactly what your loved one wishes, I feel like it is a real gift to do that for someone. To know that you have had these conversations and made these decisions early on, you don’t have to worry about the decision – you can have peace of mind.”

A physician: “Basically, you’re being taught by your

dying and sick patients. So you’re exposed to this wisdom time and time and time and time again, and, as grace would have it, sometimes we learn.”


Consumer’s Tool Kit for Health Care Advance Planning, Second Edition, Commission on Law and Aging of the American Bar Association, 2005.

http://www.americanbar.org/content/dam/aba/uncategorized/2011/2011_aging_bk_consumer_tool_kit_bk.authcheckdam.pdf

Advance Care Planning: Preferences for Care at the End of Life, Agency for Healthcare Research and Quality, Research in Action, Issue #12, March 2003.

http://www.ahrq.gov/research/findings/factsheets/aging/endliferia/endria.pdf

Making Your Healthcare Wishes Known, Caring Conversations, Center for Practical Bioethics, 1999, Revised 2013.

http://www.practicalbioethics.org/files/caring-conversations/Caring-Conversations.pdf.

7 August 2014 44

Life Choices, Missouri Attorney General Document.

http://ago.mo.gov/publications/lifechoices/lifechoices.pdf

Five Wishes, Aging with Dignity. http://www.agingwithdignity.org/

forms/5wishes.pdf Compassion and Choices. For access to

their advance planning resources:https://

www.compassionandchoices.org/what-we-do/advance-planning/

Caring Connections, a program of the National Hospice and Palliative Care Organization. Link to state specific advance directives.

http://www.caringinfo.org/i4a/pages/index.cfm?pageid=3289


The African American Spiritual and Ethical Guide to End of Life Care - What Y'all Gon' Do With Me? Guide prepared by Heart Tones, addressing historical, cultural and spiritual factors that influence African - Americans’ decisions about end-of-life care and planning.

http://www.hearttones.com/resources.php

Georgia Health Decisions CRITICAL ConditionsSM Planning Guide.

http://georgiahealthdecisions.org Advance Care Planning, Selected

Resources for the Public: A publication from the Centers for Disease control.

http://www.cdc.gov/aging/pdf/acp-resources-public.pdf


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