Sudore ctac talk-6-24-13

Redefining the Planning in Advance

Care Planning: Preparation for

Medical Decision Making

Rebecca L. Sudore, MD

Associate Professor of Medicine

University of California, San Francisco

San Francisco VA Medical Center

What have we learned

• Help patients understand their options

– Literacy/language

• Help patients prepare for decision making

– Tailor information:

• Literacy/language

• Surrogate availability

• Preferences for decision making

• Measure broad range of ACP outcomes

Traditional Objective of ACP

• To have patients make treatment decisions in

advance of serious illness in an attempt to

provide care consistent with their goals.

• Advance directives/POLST most often use

– Check boxes

– Are you Full Code/DNR/DNI…yes or no?

Advance Directives Are Helpful

• Teno J. et. al., JAGS 2007

– AD = better communication between surrogate

& doctor, but still high stress

• Silveira M. et.al., April 2010 NEJM:

– AD preferences = care received “last days”

– But, all proxy report 2 yrs later (bias)

– What is still unknown:

• Preferences more likely to be honored w/ AD vs. w/o

• Do ADs shape decisions in last mo/yr not just days?

Problems with Advance Directives

• Not available when needed (POLST, EMR may help)

• Does not improve knowledge of pts’ preferences

• Does not always affect care/cost at the end-of-life

• Does not prevent surrogate stress or conflict

The SUPPORT Principal Investigators. JAMA. 1995

Perkins HS. Ann Intern Med. 2007; Fagerlin A. Hastings Cent Rep. 2004

Do Patients Understand the Forms?

Literacy & Poor Understanding

• Literacy

– Mean reading level for U.S. adults is the 8th

grade

• ≥65 years = 5th grade level

– Health information written > 12th grade

Uncertainty @ Hypothetical Scenarios

• 50% of diverse older adults who reported a

treatment preference based on a hypothetical

scenario were uncertain about their decision

• Uncertainty associated with:

– Limited literacy, lower education

– Latino, Asian/Pacific Islander, African Am.

– Poor health status

Sudore RL & Schillinger D, et. al., J Health Comm. 2010

Allen RS. et.al., J Am Geriatr Soc, 2008; Volandes AE, et. al,. Med Decis Making. 2005

Poor Understanding of Checkboxes

Poor Understanding of Checkboxes

• What does this mean to you?

“This means that I only want to be on machines for a

few days. My family knows this.”

Are Advance Directives Enough?

Are Advance Directives Enough?

“We got the DNR in writing. But in making the

decisions, which there were many, that was

just one. Because the first decision was to put

him in a nursing home. We were married 30

years and I could no longer take care of him

(tearful). Then the second decision was

whether to put him on a feeding tube because

he had stopped eating and I wasn’t ready to

let him go.”

Forms and checkboxes

• No form or checkbox will ever eliminate

the uncertainty and the complexity of the

human condition.

Lack of Decision Support

• Advance Care Planning (ACP)

– Traditional focus: document life-sustaining

treatment preferences in advance directives.

Lack of Decision Support

• Advance Care Planning

– Traditional focus: document life-sustaining

treatment preferences in advance directives.

– Fails to provide direction for or decrease

stress of many, complex decisions of serious

illness.

Broaden the Paradigm of

Advance Care Planning

• Move away from premature decisions

about life-prolonging procedures

• Move toward a paradigm focused on

preparing for communication and decision

making

Sudore RL, Fried TR, Annals of Intern Med, 2010

Broaden the Paradigm of

Advance Care Planning

• Move away from premature decisions

about life-prolonging procedures

• Move toward a paradigm focused on

preparing for communication and decision

making

• Identifying what is important, communicating

Sudore RL, Fried TR, Annals of Intern Med, 2010

• Media (e.g. Terri Schiavo)

– 92% English/Spanish-speakers heard of Terri

– Due to the case and media coverage:

• 61% clarified own goals of care

• 66% spoke to family about goals of care

• Only 8% spoke to their doctor (missed opportunity)

Patient Stories are Powerful

Sudore RL, Schillinger D, et. al. J Gen Intern Med. 2008

Focus Groups

• Semi-structured interviews

– Patients’ and surrogates’ experiences with

decision making for serious illness

– Past experiences with discussions @ death

– “Advice” about what best prepared them

In press, JPSM

Focus Groups

• Participants: VA, SF General, community

– English and Spanish-speakers

– Dedicated African Am., Latino, Asian/PI groups

• 7 patient focus groups

– ≥65 years, made serious medical decisions

• 6 surrogate focus groups

– ≥18 years, made serious decisions for others

Results: Participants

Patients

n = 38

Surrogates

n = 32

Mean Age ± SD 78 ± 8 57 ± 10

Women 32% 68%

Race/ethnicity

African American 11% 52%

Latino/Non-white Hispanic 34% 0%

Asian/Pacific Islander 16% 39%

White 39% 9%

Results

Identified 5 Themes to Prepare for

Decision Making for Serious Illness

(1) Identify a surrogate decision maker and

formally ask them to serve in that role

(1) Identify a surrogate decision maker and

formally ask them to serve in that role

“My wife wouldn„t be objective. My daughter, I

think, would make a good judgment, but she

didn‟t know I wanted her to. You have to ask.”

(2) Reflect on past experiences and what is most

important in life to define goals for medical care

“My father had cancer of the bile duct – he

suffered incredibly and he died a miserable death. I

don’t want to put myself…or my family through it.

I know this now for myself.”

(2) Reflect on past experiences and what is most

important in life to define goals for medical care

(3) Prepare surrogates by discussing whether to

grant leeway or flexibility in decision making

(3) Prepare surrogates by discussing whether to

grant leeway or flexibility in decision making

“I don‟t really want to put that kind of burden on my

daughter. She could do what she wants. I don’t

want her to have guilt over decisions that she might

have made on my behalf…”

(3) Prepare surrogates by discussing whether to

grant leeway or flexibility in decision making

“As a child, I would feel better knowing he would

want me to evaluate it and maybe change it based

upon things which have occurred since he put that in

writing. So I would feel, even though it might be

painful, that I did the very best I can.”

(4) Tell other family and friends, and doctors,

about one’s decisions to prevent conflict

(4) Tell other family and friends, and doctors,

about one’s decisions to prevent conflict

“My dad called a meeting and he said that I would

be the decision-maker. My other siblings got mad.

But that was the bottom line. Everybody knew and

when I made those decisions, they all got back. I

thought that was the bravest thing that I have ever

seen when he made the meeting. They all knew to

get out of our way.”

(5) Ask questions of clinicians that focus on

the outcome of treatment

(5) Ask questions of clinicians that focus on

the outcome of treatment

“Are we reviving him – sticking the tube in – so that

he can suffer more? I guess it goes back to what

happens IF you revive him? Is he going through

that whole process again? It’s the end result.”

Interactive, multi-media website

Creating PREPARE

• Expert panel

• Health Literacy

• Geriatrics & Palliative Care

• Behavior change

• 13 focus groups

• Patients & surrogates

• Cognitive interviews

Creating PREPARE

• Expert panel

• Health Literacy

• Geriatrics & Palliative Care

• Behavior change

• 13 focus groups

• Patients & surrogates

• Cognitive interviews

• Videos that model behavior: HOW

Creating PREPARE

• Easy to understand

– 5th-grade reading level, large font

– Voice-overs & closed captioning

• Balanced content of videos:

– Race/ethnicity, gender

– Aggressive vs. comfort care

– Surrogate vs. no surrogate

– Want to be involved in decision making vs. not

Pilot, n=43

• Pre-post pilot study of 43 diverse, older

adults

– Low income senior centers in San

Francisco

– ≥ 60 years of age

– ≥ 2 chronic health conditions

• Survey at baseline and 1 week after

viewing PREPARE

Need New Outcomes to Measure

Successful ACP

• Old paradigm: Complete advance directives

• New paradigm: Multiple ACP behaviors

• Choosing and talking to a surrogate

• Identifying and communicating goals with family

and doctors

Need New Outcomes to Measure

Successful ACP

• Old paradigm: Complete advance directives

• New paradigm: Multiple ACP behaviors

• Choosing and talking to a surrogate

• Identifying and communicating goals with family

and doctors

– Detect movement along behavioral change

pathway from pre-contemplation to action for

multiple ACP behaviors

Need New Outcomes to Measure

Successful ACP

Behavior Change Pathway

Pre-contemplation Contemplation Preparation Action

Need New Outcomes to Measure

Successful ACP

Behavior Change Pathway

Pre-contemplation Contemplation Preparation Action

–Behavior Processes:

»Knowledge

»Contemplation

»Self-efficacy

»Readiness

Need New Outcomes to Measure

Successful ACP

Behavior Change Pathway

Pre-contemplation Contemplation Preparation Action

–Behavior Processes:

»Knowledge

»Contemplation

»Self-efficacy

»Readiness

• Validated an ACP Engagement Survey

-Behavior Processes & Actions

Outcomes & Analysis

• Outcomes

1. Change ACP Engagement

• New Survey (Behavior Processes 5-pt Likert & Actions)

2. Movement along the behavior change pathway

• % pre-contemplation vs. contemplation, preparation,

action, maintenance

3. Ease-of-use on a 10-point scale, 10 easiest

Results

Characteristics n = 43

Mean Age ± SD 68 ± 7

Women 51%

Race/ethnicity

African American 44%

White 35%

Latino/Non-white Hispanic 9%

Asian/Pacific Islander 7%

Limited Literacy 33%

Limited Computer Literacy > 90%

PREPARE Improves ACP Engagement

Baseline 1-week P-value

Total Behavior

Processes Score

3.1 (0.9) 3.7 (0.7) <0.001

Knowledge 3.7 (1.0) 4.3 (0.8) <0.001

Contemplation 2.6 (1.0) 3.4 (1.0) <0.001

Self-efficacy 3.7 (1.1) 4.2 (0.7 <0.001

Readiness 2.8 (1.2) 3.4 (1.0) <0.001

PREPARE Improves ACP Engagement

Average 5-point Likert

Baseline 1-week P-value

Total Behavior

Processes Score

3.1 (0.9) 3.7 (0.7) <0.001

Knowledge 3.7 (1.0) 4.3 (0.8) <0.001

Contemplation 2.6 (1.0) 3.4 (1.0) <0.001

Self-efficacy 3.7 (1.1) 4.2 (0.7) <0.001

Readiness 2.8 (1.2) 3.4 (1.0) <0.001

* Action Measures showed trend, not significant

• Pre-contemplation decreased for all actions,

p<.003

– e.g., Baseline 61% never thought about talking

to doctor about goals for care

-1 week after PREPARE, only 35% were pre-

contemplative, p<.003

– Mean decrease of 21% across multiple ACP

behaviors (range, 16%-35%)

PREPARE Helps People Move Along the

Behavior Change Pathway

• PREPARE website rated a 9 out of 10

(±1.9) for ease-of-use

PREPARE Rated Easy to Use

Implications

• PREPARE may improve advance care

planning & decision making:

– Easy to understand by diverse, low-literate patients

– Helps engage in behavior change

• PREPARE may be easy to disseminate:

– Free to the public, web-based

– Does not require clinician time or effort

What have we learned

• Help patients understand their options

– Literacy/language

• Help patients prepare for decision making

– Tailor information:

• Literacy/language

• Surrogate availability

• Preferences for decision making

• Measure broad range of ACP outcomes

Thank You!

• PREPARE: www.prepareforyourcare.org

• [email protected]