9/13/2016
© 2015 COALITION FOR
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WWW.COALITIONCCC.ORG
Advance Care
Planning (and more)
Karl Steinberg, MD, CMD,HMDC
@karlsteinberg, [email protected]
© 2016 COALITION FOR COMPASSIONATE CARE OF CALIFORNIA
Tessa & Josie
© 2016 COALITION FOR COMPASSIONATE CARE OF CALIFORNIA
Advance Care Planning
ACP is a process
that unfolds over a life spanA broad term that encompasses all discussions and
measures taken in advance to address goals of careNOT “Advanced”—NO “d”!
Can range from very specific to very general
Can involve family, health care providers, spiritual counselors, and others
Helps ensure that people get the treatment they want to getAnd avoid getting the treatment they don’t want to get!
Advance Care Planning
Often involves creating an Advance Health Care Directive (AHCD), or Durable Power of Attorney for Health Care
Designates an agent to make health care decisions on your behalf
“Choice to prolong life” vs. “Choice not to prolong life” within the limits of generally accepted health care standards
Can specify certain wishes (e.g., no tube feeding)
But… It’s not a doctor’s order like POLST
Advance Care Planning
It’s recommended that everyone over 18complete AHCD
Can only be completed by persons who have decisional capacity (including those with early dementia)
Doctors and nurse practitioners/physician assistants can now bill for these discussions
Advance Care Planning
Advocates
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Helps avoid unwanted and unpleasant medical interventions and “medicalization” of death
Allows loved ones/decisionmakers to feel comfortable when directing treatment
Nothing completely eliminates guilt, but ACP conversations and documents definitely help
Makes healthcare professionals more comfortable with providing or withholding/withdrawing treatment
Usually enhances patient-clinician relationship and trust
As a side benefit, can reduce healthcare costs
Why is Advance Care Planning important?
Avoids making decisions in a crisis situation
Creates realistic expectations of medical interventions and predicted functional status
Helps us provide truly person-centered care
Allows family members to become closer through these important discussions among themselves
• But: Cannot envision every possible scenario
• And: Remember, people change their minds (…in both directions)
Why is Advance Care Planning important?
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Life Expectancy
62
64
66
68
70
72
74
76
78
80
Average U.S. Life Expectancy (both genders)
1950
1960
1970
1980
1990
2000
2010
Centers for Disease Control [Internet].
Atlanta, GA: National Centers for Health Statistics. Available from:
http://www.cdc.gov/nchs/
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Leading Causes of Death in the U.S.
Centers for Disease Control [Internet].
Hyattsville, MD: Leading Causes of Death; 2010. Available from:
http://www.cdc.gov/nchs/fastats/leading-causes-of-death.htm.
0
100,000
200,000
300,000
400,000
500,000
600,000
700,000
Cause of Death
Heart Disease
Cancer
Chronic lowerrespiratorydisease
Stroke
Accidents
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Quality of Care at the End of Life
Teno, J.M., Clarridge, B.R., Casey, V., Welch, L.C.; Wetle, T., et al. (2004) Family
perspectives on end-of-life care at the last place of care. JAMA, 291, 88-93. Wright AA
Associations between end-of-life discussions, patient mental health, medical care near
death, caregiver and bereavement adjustment. JAMA 2008; 300(14) 1665-1673.
Inadequate emotional support 50%
Not enough information 30%
Inadequate physician communication 24%
Inadequate attention to pain 24%
Inadequate attention to dyspnea 22%
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Californians Think Planning for Serious
Illness and End of Life is Important
CHCF 2012 data, The Final Chapter
Think recording wishes
is important 82%
Wishes for care
Recorded in some form: 23%
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© 2016 COALITION FOR COMPASSIONATE CARE OF CALIFORNIA
Most Patients Do Not Discuss End-of-Life
Wishes with Family
Source: Californians’ Attitudes Toward End-of-Life Issues, Lake Research Partners,
2011. Statewide Survey of 1,669 adult Californians, including 393 respondents who
have lost a loved one in the past 12 months. Copyright 2012, California HealthCare
Foundation
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Most Patients Do Not Record Their Wishes for
Care or Discuss Options with Providers
• 23% of Californians have recorded their wishes for care in a written document.
• 9% of California patients report that a physician asked them about their wishes for care at the end of life.
Data: CHCF 2012 Final Chapter
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Deaths in Acute Care Settings are Down;
Intensive Care at the End of Life is Increasing
Change in End-of-Life Care for Medicare Beneficiaries: Site of Death,
Place of Care, and Health Care Transitions in 2000, 2005, and 2009
Teno, JM JAMA, 2013 February 6
0
5
10
15
20
25
30
35
40
45
Deaths in Acute CareHospitals
ICU use in last 3months of life
Hospice use at time ofdeath
2000
2005
2009
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What We’re Aiming For
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ACP: A conversation about…
What is important to the individual
Hopes, goals and concerns about the future
The realities facing the individual
Diagnoses, abilities, limitations, resources
Completing documents and arrangements
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Benefits of ACP Discussions:
The Patient’s Perspective
• Increases likelihood that wishes will be respected at end of life
• Achieves a sense of control
• Strengthens relationships
• Relieves burdens on loved ones
• Eases sharing of medical information (HIPPA)
• Provides opportunities to address life closure
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What healthcare professionals need to
hear from patients
Surrogate
Who is to speak for the patient if incapacitated
Treatment wishes
Such as resuscitation (CPR)
Values, Goals, Preferences
What makes life worth living
What needs to be completed before death
What is unacceptable to the patient
“I’d rather die in comfort than _____.”
Special religious or cultural preferences
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ACP: What patients need to hear from
healthcare professionals
Current state
Diagnoses
Threats to wellbeing and function
Expected outcomes (life expectancy, disability, death)
Treatment options
Benefits
Burdens
Likely results
Alternatives
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Who Speaks for the
Patient
In the following order:
• Named in Verbal Advance Directive
• Named in Written Advance Directive
• Named as Conservator by Court
• Closest Available Relative
• Other Friends if above unavailable
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Terms for Surrogate
• Legal Terms
• Surrogate – verbal AD
• Agent – written AD
• Conservator – court order
• Other, closest available relative
• Community Terms
• Surrogate / Decisionmaker / Spokesperson/ Proxy
DECISIONS and Communication
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Choosing a Surrogate
• Choose one person as Primary surrogate
• Naming two or more people as Primary can create problems
• Choose an Alternative surrogate
• List a 2nd surrogate & consider listing a 3rd
• What to do with additional family members
• Consider giving them other roles
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Qualities of a Good Surrogate
• Willing and able
• Knows values and preferences
• Can make difficult decisions
May or may not be the “closest” family member
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Scope of Surrogate’s Authority
Decisions about:
• Choose healthcare providers
• Approve or refuse medical treatment
• Agree to testing
• Review medical records
• Donate organs
• Authorize autopsy
• Direct disposition of remains
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Scope of Surrogate’s Authority
How does surrogate make decisions:
• Legal Standard
• In accordance with patient’s Expressed Wishes (substituted judgment)
• To the extent unknown, based on Patient’s Values and Best Interests (best interests)
• Documents may specify how much leeway the surrogate can exercise
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Scope of Surrogate’s Authority
How does surrogate make decisions:
• Lay Language
• Carry out the patient’s wishes
• Make the decisions the patient would have made
• Stand in the shoes of the patient
• “Substituted judgment”
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Who Cannot be a Surrogate
• Patient’s supervising healthcare provider
• Employee of the healthcare institution where the patient receives care
• Unless related to patient, or
• Patient also employed by institution
• Operator or employee of facility where the patient lives
• Unless related to patient
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When is the Surrogate’s Authority
Effective
• When patient lacks capacity (if there is a “springing clause”)
• Anytime the patient requests that the surrogate make decisions
• If the patient so designates in advance directive, immediately
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© 2016 COALITION FOR COMPASSIONATE CARE OF CALIFORNIA
What Else Can Go Into AHCD
• Goals
• Values
• Treatment Preferences
• Leeway
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Leeway
• Choose how much flexibility you want your surrogate to have
• No Flexibility
• Expect surrogate to follow wishes exactly
• Some Flexibility
• Some wishes are flexible, others are not
• Total Flexibility
• Okay for surrogate to do what he/she thinks is
best at the time
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Advance Care Planning
Documents
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Which document do I use?
• No single form for California
• Several to choose from
• Statutory form
• Simple versions
• Five Wishes
• DPAHC only
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What is an Advance Health Care
Directive?
• Tool to make health care wishes known if unable to
communicate
• Allows a person to do either or both of the following:
• Appoint a surrogate decision maker
• (Durable Power of Attorney for Health Care)
• Give instructions for future health care decisions
• (Living Will)
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What is Required
• Individual’s signature
• Date of execution
• Witnesses or Notary
• In nursing home, the
ombudsman must
witness AHCD signing
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Two Witnesses
Witness either
Signing of advance directive, OR
Patient’s acknowledgement of his/her signature
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Who Cannot be a Witness
• Neither Witnesses can be
• Patient’s healthcare provider or employees of
patient’s healthcare provider
• Operator or employee of community care facility or
assisted living facility
• The agent named in the advance directive
• One of the Witnesses cannot be
• Related to patient by blood, marriage, adoption
• Entitled to a portion of the patient’s estate
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Duration of Effectiveness
Advance directives do not expire (“Durable”)
• Unless document states otherwise
• The one with the most recent date will be followed to
the extent of a conflict
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California Recognizes
Advance directives executed in another state in
compliance with that state’s requirements
Military advance directives
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What is a verbal Advance Directive?
• When residing in a healthcare institution
• Patient notifies supervising healthcare provider
• Provider documents in chart
• Good for lesser of stay or 60 days
ACP Across the Continuum
Advance Care Planning Continuum
Complete an Advance Directive
Complete a POLST Form
Age 18
Treatment Wishes Honored
Diagnosed with Serious or Chronic,
Progressive Illness (at any age)
Update Advance Directive Periodically
CCCC perspective on Advance Care Planning
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POLST
Physician Orders for Life-Sustaining Treatment
• Physician’s Medical Order
• Provides instructions regarding specific
medical treatment
• Legally binding across healthcare sites in
California
• Valid only if appropriately signed by patient (or
decisionmaker) and physician/NP/PA
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Who Would Benefit from POLST?
• Serious illness
• Medically frail
• Chronic progressive condition
Qualitative tool for determination:
“….You wouldn’t be surprised if this patient died within the next year.”
2014 POLST Form
2011 POLST Form
2014 POLST Form
2011 POLST Form
When does this apply?
When Does Section A Apply
Resident has died a natural death No heartbeat
Not breathing
Important for people to know that checking DNR/AND does not mean “Do Nothing” in situations short of a full cardiac and respiratory arrest
Useful to communicate that CPR is not very effective in frail elderly patients, and can cause serious harm for those who survive
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2014 Section B—Goal Statements
In 2014 Revisions, Section B statements reflect goals of care as opposed to just descriptions, also does not use the language “Comfort Care Only” or “Limited Interventions”
Also added “time-limited trial” of full treatment
Also modified the order of all sections to be consistent, most aggressive to least aggressive
Section B – Full Treatment
Full Treatment Full use of all hospital has to offer
Including ICU & intubation/ventilation, dialysis, etc.
Invasive, intense, aggressive
CPR = most invasive/aggressive intervention Those choosing CPR in Section A must choose Full
Treatment in Section B
Can be for trial period, either a specific time or just left blank and defer to decisionmaker
Section B – Selective Treatment
Selective Treatment Most complex category
Not ready for pure comfort care, but want less invasive treatment No ventilator / intubation
Think twice before surgery or ICU
Treat treatable conditions if not too burdensome
What many people would consider “No Heroics”
Do Not Transfer option Acknowledges residents who want these treatments in SNF (or LTAC,
but not hospital—still transfer if comfort needs can’t be met
Section B – Comfort-Focused Treatment
Comfort-Focused Treatment Everyone gets comfort care
Whether box is checked or not
Choice is mostly for residents at end of life—interventions designed to prolong life not wanted Care plan should be consistent
Evaluate all treatments and meds, many appropriate to stop—usually no antibiotics for infection
Change in condition – Evaluate For example, broken hip may need surgery to address pain,
which promotes comfort
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Advance Directive vs. POLST
AHCD POLST General instructions for
FUTURE CARE
Requires interpretation
Specific orders for
CURRENT CARE
Needs to be retrieved Stays with the patient
Many different forms
Signed by patient,
witnesses
Single, standardized form
Signed by patient (or HC
Agent) and physician
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POLST vs. Pre-Hospital DNR
(Do Not Resuscitate)
POLST Pre-Hospital DNR
Allows for choosing
resuscitation
Can only use if
choosing DNR
Allows for other
medical treatments
Only applies to
resuscitation
Honored across all
health care settings
Only honored outside
the hospital
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Keeping Wishes Up to Date
Review and Update DocumentsImportant life changes
Marriage, birth, divorce, death
Major change in health status
Change in treatment preferences
Mnemonic: 5 D’s:
Decade, Disease, Disability, Divorce, Death
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What If I Change My Mind
IndividualCan modify or revoke his/her wishes at any time for any reason
Surrogate
Surrogate’s job is to carry out individual’s wishes
ProcessBest practice is to execute a new document
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What do I do with the document?
• Give copy to your agent.
• Make copies for other loved ones.
• Discuss with doctor; get in medical record.
• Keep a copy; take to hospital if you go.
• Photocopies are just as valid as original.
• Original POLST should be kept on bedpost or refrigerator
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Palliative Care
• What is it
• For people with serious illnesses
• Relief from symptoms, pain, and stress
• Improves quality of life for both patient and family
• Appropriate at any age and at any stage in a serious
illness
• Team-based
• Can be provided along with curative treatment
• Structured as philosophy of care
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Hospice
• What is it
• Care at the end of life
• Team of healthcare providers
• Focused on symptoms, comfort, quality of life
• Support patient and family
• Come into your “home”
• Requirements
• Six months or less life expectancy
• Forgo curative treatment
• Provided as medical benefit
© 2016 COALITION FOR COMPASSIONATE CARE OF CALIFORNIA
Take-Home Messages
• Do Advance Care Planning Now
• Do it with your whole family!
• Choose the right person to make decisions for you
• If you are seriously ill or have strong feelings about what kinds of treatment you want, consider a POLST
• Remember that DNR does not mean “just let me die”
• Dehydration is not a bad way to die
• If you don’t make your wishes known, our default is to treat you as aggressively as possible to prolong your life—if you want that, great. …..If not: make your wishes known.
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© 2016 COALITION FOR COMPASSIONATE CARE OF CALIFORNIA
CCCC Decision Guides
Coalition for Compassionate Care of California www.coalitionccc.org, www.caPOLST.org
The Conversation Project (for patients/families) http://theconversationproject.org/
Vital Talk (for docs/clinicians) www.vitaltalk.org
Center for Practical Bioethics (for clinicians) www.practicalbioethics.org
California State University Institute for Palliative Care https://csupalliativecare.org/
Selected Web Resources
Prepare www.prepareforyourcare.org (also available in Spanish)
ePrognosis (Estimating Prognosis for Elders) www.ePrognosis.org
American Bar Association http://www.americanbar.org/groups/law_aging/resources/health_care_deci
sion_making.html
Caring Advocates (Dementia) www.caringadvocates.org
Five Wishes (for general public, advance care planning) www.fivewishes.org
Selected Web Resources Questions? [email protected]
@karlsteinberg