DYING WELL

HOW ADVANCE CARE PLANNING HELPS

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

Presentation Objectives Be aware of the historical, cultural, legal,

and public health contexts for advance care planning

Identify the common barriers to effective advance care planning

Understand the critical components of the advance care planning process

Articulate the benefits of effective advance care planning

Recognize their responsibility, as professionals, for facilitating the conversation about advance care planning

7 August 2014Dying Well 2

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

The Quest to Die with Dignity [1997]

• Fear being hooked up to machines• Prefer a natural death, in familiar

surroundings with loved ones• Current health care system not supportive• Uncomfortable with the topic, resist

taking action• Family consideration is the primary

concern• Planning options then not supportive of

wishes related to dying

Focus Group Participant

"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."

Starting “The Conversation”

The things that make my life worth living include (note all that apply):

Thinking well enough to make everyday decisions

Being able to take care of myself (bathing, dressing, etc.)

Communicating with and relating to others

Being comfortable and free from pain Living independently without the aid

of life-support machines7 August 2014Dying Well 6

In making decisions about my final health care, I want to prolong my life as long as possible by any means possible:

Yes No Undecided

If I am in the final stages of an illness that cannot be cured, and I develop another illness that can be cured, I want to receive medications and/or surgery for the illness that can be cured:

Yes No Undecided

If I could not communicate for myself, I know who would make health care decisions for me:

Yes No Undecided

How many of you actually have your own advance directives?

How many of you have assisted another person [patient, client, family member, etc.] with their planning and decisions about end of life care?

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

The Context for Advance Care The Context for Advance Care PlanningPlanning

Cultural History: Phillipe Ariès, 1974Cultural History: Phillipe Ariès, 1974 Death is a social construction, evolving

over time The oldest, longest held, and most

common historical context: And we shall all die

Second historical context: twelfth century; focus on one's own existence and death

Third historical context: early eighteenth century; more focus on the death of others, less focus on one's own death

Changes occurred slowly over centuries, attracting little notice

Cultural History

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

The Context for Advance Care Planning

Legal History Root of advance care planning is in the courts

State legislation: 1960s/1970s Advances in technology create

confusion: saving life vs. prolonging death

1967: First advance directive proposed 1976: In re: Quinlan, N.J. Supreme

Court: Right to remove ventilator 1976: California: First living will statute

Legal History

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

State legislation: 1980s End of 1986: 41 states with living will

laws Need identified for health care power

of attorney statutes 1983: California the first By end 1997: all states have some version

Legal History

1990s: Self-help tools emerge; focus on

planning process Out of hospital DNR orders emerge Also surrogate consent or family

consent laws [in absence of advance directive]

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

1991: New Jersey: consolidates health care decision acts

1991: Oregon develops first POLST program

1993: U.S. Congress: Uniform Health Care Decisions Act

Legal History

2000s: Paradigm shift from legal transactional

approach to communications approach 2006: Joint Commission Standards on

Advance Directives 2010: U.S. Congress: Patient

Protection and Affordable Care Act Provision for reimbursing physicians for advance care planning was removed – “death panels” and rationing claims

2010: Medicare adopts policy to reimburse advance care planning – revoked due to right to life concerns

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

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.

Public Health ImplicationsWho Has Advanced Directives: What Do We

Know? 29.0% have health care proxy [2009] 60.8% older adults have durable

POA for HC [2007] < One in four entering hospital have

AD [2005] Living wills have limited influence:

vague; difficult to apply; misinterpreted as DNR orders

Considerable variation in what physicians will discuss [2010]

Public Health ImplicationsThe Cost of Care

Inpatient costs with no AD three times greater than costs with AD [1994]

Estimates of % of Medicare budget spent during last year of life: 25 – 40% [2001] 40% of this in the last 30 days

Costs vary greatly by city

Public Health Professionals Speak

Palliative & End of Life Care Expert PanelAmerican Academy of Nursing

Advance Care Planning: 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

Public Health Professionals SpeakEnd of Life Issues: PH Crisis [AJPH, 2013]

>60% want EOL wishes respected Only 30% have ADs Twice as many whites as African Americans with

ADs Prefer info from health care providers ADs likely to reduce costs

58% die in hospital; 20% in nursing homes; 22% at home; institutions always costlier

Advance care planning part of prevention Increasing rate of AD completion part of PH

agenda7 August 2014Dying Well 23

We Are Not Dying Well in America

Too many dying people suffer from pain and other distress

Organizational impediments to good care can be identified and remedied

Serious attention needed to address gaps in scientific knowledge about the end of life

Better evaluation of outcomes strengthens accountability

[1997]7 August 2014Dying Well 24

A Silent Anguish [1999]Georgians speak

Marked inconsistencies in quality of care

Communications issues prominent Biggest frustration: Getting information EOL treatment decisions difficult and/or not

honored Abandonment by professionals when

treatment futile Reluctance to implement good pain

management Hospice option generally not presented

One caring health professional IS the difference

Care often unnecessary and unwanted7 August 2014Dying Well 25

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

Available on the Critical ConditionsSM website: In the News/And the dilemma goes on

Barriers to Advance Care Planning: Legal The Milbank Quarterly, C. Sabatino, 2010 Legal infrastructure largely in place, but:

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 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 confuse Confusion between financial and

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

struggle7 August 2014Dying Well 28

“Not much has changed in the past decade. For something that is so ‘right,’ and so ‘obvious,’ [dignity, comfort, diminished costs, etc.] it is ever so hard to get it into place and keep it there. It is a hard nut to crack.”

Beverly Tyler, Executive Director, Critical ConditionsSM Program, June 2014

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

Make “THE CONVERSATION” central

The ProcessShared Decision-Making That

Never Ends

Advantages of Advance Care Planning Enhances individual/family decision-

making Encourages individual/family to face

potential end-of-life decisions Involves individual/family as

proactive members of the health care team

Provides direction to the health care team

Reduces caregiver guilt and stress Avoids crisis decision-making

Start early7 August 2014Dying Well 32

Hallmarks of Successful Advance Care

Planning• Individuals and families discuss

and document their preferences• Health care professionals are

involved in “The Conversation,” and

• Health care systems place a priority on understanding and following the individual’s preferences

Gold Standard for Advance Care Planning

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

A genuine system change7 August 2014Dying Well 34

The Conversation StarterCritical ConditionsSM Planning Guide

General Guidelines• WHO will be a part of the conversation?• Take time on more than one occasion• Be aware of challenging topics

Above all, remember that your wishes can’t be followed if no one knows what they are

The Conversation StarterCritical ConditionsSM Scenarios and

Questions• General Concerns• 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 for You If You

Cannot?

The 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

Advance Directives

Basic Ingredients: 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 signed7 August 2014Dying Well 44

Food For Thought

Our presentation title: Dying Well Our contention: We continue NOT

Dying Well We have choices, enabled by

supportive legislation and great tools How do we turn this situation around? What is MY responsibility - as an

individual? What is OUR responsibility - collective,

societal, community? 7 August 2014Dying Well 46

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.”

Resources

Peaceful Dying: The Step-by-step Guide To Preserving Your Dignity, Your Choice, And Your Inner Peace At The End Of Life, Daniel R. Tobin, Karen Lindsey, Da Capo Press; (January 22, 1968)

Dying Well: Peace and Possibilities at the End of Life, Ira Byock, MD, Riverhead Trade; (March 1, 1998)

Can't We Talk about Something More Pleasant?: A Memoir, Roz Chast, Bloomsbury USA; First Edition (May 6, 2014)

Western Attitudes toward Death: From the Middle Ages to the Present (The Johns Hopkins Symposia in Comparative History), Phillippe Aries, Patricia Ranum (Translator), Johns Hopkins University Press (August 1, 1975)

The Quest to Die With Dignity: An Analysis of Americans’ Values, Opinions and Attitudes Concerning End-of-Life Care, A Report by American Health Decisions: Executive Summary, Beverly A. Tyler, American Health Decisions, October 1997

A Silent Anguish: Recognizing the Needs of Dying Patients and Their Families, Beverly Tyler, Report provided by Georgia Health Decisions, 1999

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 50

Life Choices, Missouri Attorney General Document.

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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