DYING WELL

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DYING WELL

• HOW ADVANCE CARE PLANNING HELPS

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

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Cant 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
  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
  life-support 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 PlanningCultural
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 PlanningLegal
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 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

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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.gov/publications/lifechoices/lifecho
ices.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 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
• lt 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 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

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Public Health Professionals SpeakPalliative
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

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

• gt60 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 1999Georgians 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 OnA Metaphorical Tale from
St. Louis, MO

• St. Louis Post-Dispatch, 24 June 2012, Jim Doyle
• 89 year old woman with Alzheimers 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
  need for future decision-making
• Forms cant provide good guidance without a guide
• Goals and preferences for care may change
• Proxy often doesnt understand the persons
  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 PlanningSocial and
Emotional

• Too busy Too young Dont 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 cant 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 ProcessShared Decision-Making That Never Ends
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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 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 individuals
  preferences

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Gold Standard for Advance Care Planning

• Discussing and following an Individuals
  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 change

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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 cant be
  followed if no one knows what they are

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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 Alzheimers
• 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/lifecho
ices.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
• Its 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 dont have to worry about
  the decision you can have peace of mind.
• A physician
• Basically, youre being taught by your dying and
  sick patients. So youre 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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• Consumers 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/uncateg
  orized/2011/2011_aging_bk_consumer_tool_kit_bk.aut
  hcheckdam.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/a
  ging/endliferia/endria.pdf
• Making Your Healthcare Wishes Known, Caring
  Conversations, Center for Practical Bioethics,
  1999, Revised 2013.
• http//www.practicalbioethics.org/files/caring-con
  versations/Caring-Conversations.pdf.

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• Life Choices, Missouri Attorney General Document.
• http//ago.mo.gov/publications/lifechoices/lifecho
  ices.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/ad
  vance-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?page
  id3289

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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-resources-public.
  pdf