advance care planning who, what, when, where, why & how · advance care planning (acp) an...

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Advance Care Planning

Who, What, When, Where,

Why & How

HANYS Palliative Care Webinar Series Oct 16, 2014

George J. Giokas, MD

Director of Palliative Care

The Community Hospice

[email protected]

Learning Objectives

• Identify 3 preferred practices in advance care planning

• Match clinical milestones with suggested advance care planning content

• Name 3 advance care planning resources

The speaker has no relevant financial disclosures

mailto:[email protected]

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Take Home Points

• Focus on conversation of what matters, not just treatments or documents

• Patient centered, family involved

• An ongoing process, not “One and Done”

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Committee on Approaching Death: Addressing Key End-of-Life Issues

Philip A. Pizzo (Co-Chair), Stanford Univ

David M. Walker (Co-Chair), Former U.S. Comptroller General

Patricia Bomba, Excellus BlueCrossBlueShield

Eduardo Bruera. MD Anderson Cancer Center

Charles J. Fahey, Fordham University

Pamela S. Hinds Children’s National Health System

Karla F. C. Holloway, Duke University

Naomi Karp, Consumer Financial Protection Bureau

Jean S. Kutner, Univ of Colorado School of Medicine

Bernard Lo, Greenwall Foundation

Salimah H. Meghani, University of Pennsylvania School of Nursing

Diane E. Meier, Center to Advance Palliative Care; Icahn School of Medicine

William D. Novelli, Georgetown University

Stephen G. Pauker, Tufts University School of Medicine

Judith R. Peres, Chevy Chase, MD

Leonard D. Schaeffer, University of Southern California

W. June Simmons, Partners in Care Foundation

Christian T. Sinclair, Gentiva Hospice

Joan M. Teno, Brown University

Fernando Torres-Gil, University of California

James A. Tulsky, Duke University Medical Center

Ellen Goodman, Director

Don Berwick, MD Ira Byock, MD

Susan Block, MD Atu Gwande, MD

http://theconversationproject.org/


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Advance care planning (ACP)

An ongoing process of discussing and clarifying the current state of a person’s goals, values and preferences for future medical care.

Advance Directive (AD)

General term referring to a written document for future medical care in the event that a person loses capacity to make health care decisions.

– Health care proxy, Living Will

Medical Order

Orders signed by a physician immediately applicable for a seriously ill individual. DNR/DNI, POLST paradigm MOLST, MOST, POST, COLST, SMOST, SPOST, TOPP

The Conversation Project

Why ?

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60% of people say that making sure their family is not burdened by tough decisions is “extremely important”

56% have not communicated their end-of-life wishes Source: Survey of Californians by the California HealthCare Foundation (2012)

70% of people say they prefer to die at home

70% die in a hospital, nursing home, or long-term-care facility Source: Centers for Disease Control (2005)

80% of people say that if seriously ill, they would want to talk to their doctor about end-of-life care

7% report having had an end-of-life conversation with their doctor Source: Survey of Californians by the California HealthCare

Foundation (2012)

Conversation Project Starter Kit

Of people who indicate end-of-life care preferences, most choose care focused on comfort …but the default hospital

mode is acute care

Among all decedents, 30 % were in an intensive care unit (ICU) in the month

preceding death

Institute of Medicine Dying in America 2014

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“Its too early until its too late”

40 % of all adult medical inpatients lack decision making capacity

44-69 % of LTC residents lack capacity

The “vast majority” of critically ill patients lack decision making capacity

Most hospitalized patients at end of life will receive care from MDs who do not know them


Percent of Medicare Patients Admitted to ICU/CCU

During the Hospitalization in Which Death Occurred 2007

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Within 3 days of death

Different NH’s post hospital discharge w/in last 90 days of

life

Multiple hospitalizations last 90 days of life

Gozalo, Pedro, et al. End-of-Life Transitions Among Nursing Home Residents with Cognitive Issues. NEJM. 2011

End-of-Life Care Survey of Upstate New Yorkers:

Excellus BlueCross BlueShield, April 2008

Slide courtesy of P Bomba, MD

It’s a good idea but ….

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Heart Failure Patients

• Study of Olmstead County with HF

• 41% of community HF patients have an AD @ study enrollment

• 27.0% patients had died after a mean follow-up of 1.8 years

• 35% of patients did not complete an AD before death

• Among patients who died, 54% were hospitalized in their final month of life, of which 30% died inpt

• During hospitalization, 47% were in an ICU and 23 (26%) received mechanical ventilation.

Dunlay Circulation:Cardiovasc Qual Outcomes 2012

At the end of life, patients with heart failure who had ADs specifying limits in

the aggressiveness of care they wished to receive were equally likely to be

hospitalized but less likely to receive mechanical ventilation.

Dunlay Circulation:Cardiovasc Qual Outcomes 2012

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Advanced Dementia – Community

• Review of Medicare Claims, 1998-2007, died after age 65

• 30% of patients with severe dementia lived in community

• > 50% of these patients experienced at least one hospitalization in the last six months of life … but only 27.4 percent had a written advance directive.

L. Nicholas, et al Health Affairs 2014

There was a strong association between having an AD and receiving less aggressive treatment (mech

ventilation, feeding tube, hemodialysis, TPN) among community-dwelling patients with severe dementia.

– Likelihood of in-hospital death (18 percentage points less)

– ICU use (9 percentage points lower).

– Medicare spending ($11,461 less per patient last 6 mos of life)

Community-dwelling patients with severe dementia who had no advance directive received end-of-life care that was as aggressive as the care provided to patients with normal cognitive functioning.


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Standard of Care

Patient Self Determination Act 1990 US Congress

NYS Palliative Care Information and Access Acts

“Conversations focused on advance care planning are an essential component of the care delivery process.”

American Geriatrics Society

American College of Cardiology/AHA

American Society of Clinical Oncology

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When ?

Just in time ACP Billings & Bernacki JAMA Int Med 2014

Too Early

Never too early to start the conversation

Values vary over time

Preferences likely context dependent

Too Late (Never)

Delayed until medical crisis

“Among hospitalist physicians in one academic medical center …code status discussions ….an average of 1 minute”

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Which Patients? Challenges with Prognosis

Cognitive Skill Set

Over-estimate prognosis by factor of 3

eprognosis.org

Seattle Heart Model; MELD, Charleson Co-morbidity Index, APACHE

Surprise Question: “Would I be surprised if this patient died in the next year? (CA, ESRD)

MD Attitudes, Comfort Level Billings & Bernacki JAMA Int Med 2014

Just in time ACP…Characteristics Billings & Bernacki JAMA Int Med 2014

• Patients understand their medical condition..and trade-offs with undergoing or forgoing life prolonging Rx’s

• Patient’s values, goals, preferences (what matters) are elicited and later used to guide Rx’s

• When appropriate, an involved MD makes a recommendation based on “what matters” to pt

• Adequate time for reflection & discussion

• Documentation and conveyed to family & healthcare team

• As medical condition changes, esp hospital admission and transfer, choices are revisited

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What ?

Chronic disease or

functional decline

Advancing chronic illness

Multiple co-

morbidities, with

increasing frailty

Death with

dignity

Maintain &

maximize

health and

independence

Healthy and

independent

Adapted from Pat Bomba, MD Compassion and Support

and Bud Hammes, PhD Gundersen Health System

1st Steps

“Who”

Next Steps

What Matters Most

Last Steps

EOL

Interventions

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• Who would make medical decisions for you?

• What medical care you would want if you had a severe brain injury and were unlikely to recover?

• Reflecting on religious, cultural or personal values that may influence your decisions Respecting Choices

Gundersen Lutheran Medical Foundation

1st STEPS

1st Steps Health Care Proxy – “the Who ?”

The person(s) you appoint to decide about your

medical care when you do not have the

capacity to do so.

Only the patient can name a HC Agent

Different than a “Power of Attorney”

2 witnesses required for completion

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Who would you choose?

At least 18 years old Knows what is important to you Able to separate his/her own wishes from your own Thinks clearly in emotional situations

NOT a Health Care Agent Durable Power of Attorney

Authorized for Disclosure of Protected Health Information (HIPAA)

Emergency Contact

Dialysis Centers 94 pts – only 3 had Surrogate Decsion-maker.

After selecting SDM, 1/3 were not the Emergency Contact JPM 2013

Emergency Department 308 pts

10% had AD (only ½ had given to their PCP)

95 % expected their emergency contact should be able to tell the medical team what their wishes were if they could not. Int PalCare Conf Montreal 2014

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What happens if no Advance Directive & Patient is without capacity?

NYS Family HealthCare Decisions Act

1. Court-appointed guardian

2. Spouse (if not legally separated) or domestic

partner

3. Son or daughter 18 or older

4. Parent

5. Adult sibling

6. Close friend

Living will – the “what” document

Outlines what care you would want in

specific medical situations:

Permanently unconscious,

Conscious but permanently confused,

Terminal condition

Difficult to predict the future…

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Next Step – Declining Health

Documents

are important, but

conversations

about what matters

even more so

What Matters Most ?

What are you hoping for?

What concerns you most about your condition or your treatments?

As your condition worsens, what trade-offs are you willing to make?

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Online “Starter Kit”

GET READY - importance of advance care planning

GET SET - ?’s for patient – values, goals Encourages subsequent conversation with family

GO – resources for advance directive completion

Care-giver resources


“What matters to me is _____.”

“What matters to me at the end of my life is _____.”


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1 2 3 4 5

I want my doctors to do

what they think is best

I want to have a say in every

decision

1 2 3 4 5

I’m worried that I won’t get

enough care

I’m worried that I’ll get

overly aggressive

care

As a patient… http://theconversationproject.org/

How long do you want to receive medical care?

1 2 3 4 5

I wouldn’t mind being cared for

in a nursing facility if

necessary

I want to live independently, no

matter what

1 2 3 4 5

I want to live as long as

possible, no matter what

Quality of life is more

important to me than quantity


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How involved do you want your loved ones to be?

1 2 3 4 5

I want my loved ones to do exactly

what I’ve said, even if it makes them a

little uncomfortable

I want my loved ones to do what

brings them peace, even if it goes

against what I’ve said


Other Considerations

Ability to interact with others

Dependency on medical interventions

“Treat in place”

Impact on Family

Should NOT be a choice between

comfort and treatment

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As a patient I

A. Want to live as long as possible no matter what

B. Would accept some decrease in QOL

C. Would accept only a little decrease in QOL

D. QOL most important To liv

e as long as

poss

ibl..

.

Will

accept s

ome d

ecreas..

.

Will

accept o

nly a li

ttle d

...

QOL most

importa

nt

0% 0%0%0%

As a patient I want

A. Docs to make most of the decsns

B. Docs to make some descns

C. I want a say in every decsn

Docs to

make m

ost o

f th...

Docs to

make so

me d

escns

I want a

say in

eve

ry d

ecsn

0% 0%0%

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How involved do you want YOUR loved ones to be?

1. Do exactly what I’ve said even if they’re a uncomfortable

2. Some leeway

3. Do mostly what brings them peace

Do exactly

what

I’ve sa

id...

Some le

eway

Do most

ly w

hat b

rings t

...

0% 0%0%

Last Steps – MOLST Medical Orders for Life Sustaining Treatments

Generally for patients with serious health

conditions – might die within the next year or

nursing home resident

Choice to receive or refuse treatments – not “all

or none”

A doctor’s order – active once signed by a doctor

– home, assisted living, nursing home, hospital

Pat Bomba, MD

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Susan Tolle, MD

Impact of Discussions

US multisite prospective study of patients with advanced cancer and their informal caregivers.

EOL discussions with MDs were NOT assoc with increased emotional distress or psychiatric disorder.

Those w/out EOL discussions were MORE likely:

– Aggressive medical care last week of life

– Reported worse quality of life near death

– Bereaved caregivers more likely to express worse QOL and more regret.

Wright et al. JAMA Oct 2008

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“Hope for the best

but be prepared

for the worst”

Who ?

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Your Advance Directive ?

1. Not on my “To Do” List

2. Thinking About It

3. Completed

4. Revised Thin

king A

bout It

Comple

ted

Revised

Came h

ere fo

r the b

reakfa

st

0% 0%0%0%

Dying is not popular;

It’s never caught on.

That’s understandable;

It’s bad for the complexion.

George Burns

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3rd Year Law Students

BioEthics Grad Students

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Cardiologists/CT Surgeons/PAs

Ethics Committee

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Where

& How ?

National Quality Forum Preferred Practices

• Document the designated surrogate/decision maker in every

patient in primary, acute, long-term care, palliative and hospice

care.

• Document the preferences for goals of care, treatment options,

and setting of care at first assessment and at frequent intervals

as conditions change.

• Convert the patient treatment goals into transferable and

applicable medical orders through a program such as POLST

program.

• Make advance directives and surrogacy designations available

across care

• Develop health care and community collaborations to promote

advance care planning and the completion of advance

directives for all individuals Institute of Medicine Dying in America 2014

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Models of Advance Care Planning

POLST – MOLST

> 90% consistency in Rx’s such as CPR, hospitalization, antbtcs provided to NH residents

when recorded on POLST

Less so with Feeding Tubes (60%)

Even with no CPR, approx 50-75% of POLST request other Rx measures


8-Step MOLST Protocol 1. Prepare for discussion

• Understand the patient and family • Understand the patient’s condition and prognosis • Retrieve completed Advance Care Directives • Determine “Agent” (Spokesperson) or responsible party *

2. Determine what the patient and family know • re: condition, prognosis

3. Explore goals, hopes and expectations 4. Suggest realistic goals 5. Respond empathetically 6. Use MOLST to guide choices and have patient/family share

wishes • Shared medical decision-making • Conflict resolution

7. Complete and sign MOLST 8. Review and revise periodically Developed for NYS MOLST, Bomba, 2005

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Community-Wide End-of-life/Palliative Care Initiative

Advisory Group (Rochester NY)

Dr Pat Bomba

https://www.compassionandsupport.org/index.php

Institute of Medicine Dying in America: 2014

https://www.compassionandsupport.org/index.php

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Respecting Choices

• Gundersen Health System, LaCrosse Wisc

• Community Wide Intervention

• Ongoing process of communication

• Trained facilitators, not just physicians

• “How can we guide your loved ones to make best decision for you?”

• System Commitment

• 85% written AD, 95% in Med Record


Meaningful Use ?? • Stage 1 Meaningful Use requirement that hospital

EHR contain Adv Dir status > 50% of admitted patients 65 years and older

• Few EHRs have a function for recording the advance directive status, and 2 of the 4 that did are primarily outpt based

"If the EHR treats a directive as a miscellaneous document, odds are it won't be known, let alone

followed when needed"

Carl Bergman, as quoted

AAHPM NewsBrief Oct 2014

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Local Initiatives

• Conversation Project

• Process Review & Testing

– Confusion about Advance Directives

– Lack of Ownership in requesting AD information

– Limited ability to retrieve previously completed Advance Directives

• Interventions

– Advance Directive “Pointer” in Hospital EMR

– Real Time Scanning of Completed Advance Directives

– Community Engagement

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“Prepare” Univ of California SF Geriatrics

https://www.prepareforyourcare.org/index.php

https://www.prepareforyourcare.org/index.php?dir&page=1-2_2_va

Take Home Points

• Focus on conversation of what matters, not just treatments or documents

• Patient centered, family involved

• An ongoing process, not “One and Done”

https://www.prepareforyourcare.org/index.php




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Institute of Medicine. Dying in America: Improving quality and honoring individual preferences near the end of life. The National Academies Press. 2014.

The Conversation Project


Compassion an Support - MOLST

http://www.compassionandsupport.org/index.php

PREPARE Univ Of Calif San Francisco Div of Geriatrics

https://www.prepareforyourcare.org/index.php?next&page=1-2_2

Deciding About Your Health Care – A Guide for Patients and Families NYS DOH

http://www.health.ny.gov/publications/1503.pdf

American Geriatrics Society

http://www.healthinaging.org/resources/resource:living-with-multiple-health-problems-what-older-adults-should-know/

http://www.healthinaging.org/resources/resource:living-with-multiple-health-problems-what-older-adults-should-know/