Transcript Dying Well - Gateway End of Life Coalition

DYING WELL
HOW ADVANCE CARE PLANNING HELPS
Susan A. Andresen, Ed.D., HS-BCP
J. Paul Newell, M.D.
Presentation Objectives
 Be aware of the historical, cultural, legal, and
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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
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“Can’t We Talk About Something More
Pleasant?” Roz Chast
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The Quest to Die with Dignity
[1997]
• Fear being hooked up to machines
• Prefer a natural death, in familiar surroundings
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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
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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."
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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 lifesupport machines
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 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
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 If I could not communicate for myself, I
know who would make health care
decisions for me:
 Yes
 No
 Undecided
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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?
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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
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The Context for Advance Care Planning
Cultural 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
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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
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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
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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
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Legal History
 1990s:
 Self-help tools emerge; focus on planning
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process
Out of hospital DNR orders emerge
Also surrogate consent or family consent laws
[in absence of advance directive]
1990: U.S. Congress: Patient SelfDetermination Act
1991: New Jersey: consolidates health care
decision acts
1991: Oregon develops first POLST program
1993: U.S. Congress: Uniform Health Care
Decisions Act
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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
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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:
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http://ago.mo.g
ov/publications/
lifechoices/lifec
hoices.pdf
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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.
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Public Health Implications
Who 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]
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Public Health Implications
The 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
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Public Health Professionals Speak
Palliative & End of Life Care Expert Panel
American 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
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Public Health Professionals Speak
End 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
agenda
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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]
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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 unwanted
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And the Dilemma Goes On
A 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
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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
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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
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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
struggle
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 “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
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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
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The Process
Shared Decision-Making That Never Ends
Discussion:
The
Conversation
Documentation:
Advance Directive
Physician Orders
Decisions:
Personal
Preferences
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Advantages of Advance Care Planning
 Enhances individual/family decision
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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 early
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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
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Gold Standard for
Advance Care Planning
 Discussing and following an
Individual’s preferences for end-oflife care is as routine as measuring
the blood pressure and asking about
and responding to allergies to
medicines
 A genuine system change
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The Conversation Starter
Critical 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
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The Conversation Starter
Critical ConditionsSM Scenarios and Questions
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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?
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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
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http://ago.mo.gov/publications
/lifechoices/lifechoices.pdf
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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 signed
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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?
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The Last Words
Someone 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.”
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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)
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 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
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 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/uncategori
zed/2011/2011_aging_bk_consumer_tool_kit_bk.authchec
kdam.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/e
ndliferia/endria.pdf
 Making Your Healthcare Wishes Known, Caring
Conversations, Center for Practical Bioethics, 1999, Revised
2013.
http://www.practicalbioethics.org/files/caringconversations/Caring-Conversations.pdf.
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 Life Choices, Missouri Attorney General
Document.
http://ago.mo.gov/publications/lifechoices/life
choices.pdf
 Five Wishes, Aging with Dignity.
http://www.agingwithdignity.org/forms/5wish
es.pdf
 Compassion and Choices. For access to their
advance planning resources:
https://www.compassionandchoices.org/whatwe-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.cf
m?pageid=3289
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 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-resourcespublic.pdf
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