Tessa & Josie Advance Care Planning ACP Presentation … · 9/13/2016 © 2015 COALITION FOR COMPASSIONATE CARE OF CALIFORNIA 1 Advance Care Planning (and more) Karl Steinberg, MD,

9/13/2016

© 2015 COALITION FOR

COMPASSIONATE CARE OF

CALIFORNIA 1

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


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!


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


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


Advocates

mailto:[email protected]

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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?


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/


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


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%


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%

http://www.cdc.gov/nchs/

http://www.cdc.gov/nchs/fastats/leading-causes-of-death.htm

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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


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


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


What We’re Aiming For


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


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


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


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


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


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


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



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



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”


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


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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What Else Can Go Into AHCD

• Goals

• Values

• Treatment Preferences

• Leeway


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



Documents


Which document do I use?

• No single form for California

• Several to choose from

• Statutory form

• Simple versions

• Five Wishes

• DPAHC only


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)


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


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


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


California Recognizes

Advance directives executed in another state in

compliance with that state’s requirements

Military advance directives


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


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


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


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


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


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


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


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


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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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

http://www.coalitionccc.org/

http://www.capolst.org/

http://theconversationproject.org/

http://www.vitaltalk.org/

http://www.practicalbioethics.org/

https://csupalliativecare.org/

http://www.prepareforyourcare.org/

http://www.eprognosis.org/

http://www.americanbar.org/groups/law_aging/resources/health_care_decision_making.html

http://www.caringadvocates.org/

http://www.fivewishes.org/