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• Broaden the concept of ACP to include

preparation for communication and decision making

• Help patients understand their options– Tailor information:

• Literacy/language/culture

• 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?

What Matters Most to Patients?

• What matters most to patients is not the treatment BUT the outcome of treatment

• Cart before the horse: Not intubation or CPR, but how their life will be after treatment.

Fried TR, et. al., N Engl J Med. 2002; Quill TE. JAMA. 2000;Lockhart LK, et. al., Death Stud. 2001 & Pearlman RA, et. al., Arch Intern Med. 2005

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)

• Not always improve knowledge of pts’ preferences

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

• Not always 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

Nat Center Educ Statistics, National Assessment of Adult Literacy, 2003

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

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.”

• Overwhelming preferred over standard• 6-mo. completion rates doubled, ~all completed easier form

FREE

English, Spanish, Chinese, Vietnamese, Tagalog,

Russian, Farsi

www.iha4health.org

Advance Directive RCT: PEC, 2007

Are Advance Directives Enough?

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.

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.”

Sudore RL et. al., J Pain and Symptom Management, 2012

Forms and checkboxes

• No form or checkbox will ever eliminate the uncertainty and the complexity of the human condition.

Broaden the Paradigm of Advance Care Planning

• Move away from only 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)

How: 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

Sudore RL et. al., J Pain and Symptom Management, 2012

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 (15-20%)– Want to be involved in dec making vs. not (18%)

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

Sudore RL et. al., J Pain and Symptom Management, 2013 in press

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 PathwayPre-contemplation Contemplation Preparation Action

Need New Outcomes to Measure Successful ACP

Behavior Change PathwayPre-contemplation Contemplation Preparation Action

–Behavior Processes:

»Knowledge

»Contemplation

»Self-efficacy

»Readiness

Need New Outcomes to Measure Successful ACP

Behavior Change PathwayPre-contemplation Contemplation Preparation Action

–Behavior Processes:

» Knowledge» Contemplation» Self-efficacy» Readiness

• Validated an ACP Engagement Survey

-Behavior Processes & Actions

Broadened Outcomes

• Outcomes1. 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 (Terri Fried, JAGS 2012)

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

ResultsCharacteristics 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 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

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

Broaden ACP Outcomes

• Documentation: forms and conversations

• Behavior change

• Patient & surrogate satisfaction with:– decision making: fully informed, empowered– medical care: c/w current, real-time goals– Communication

• Others?

What have we learned• Broaden the concept of ACP to include

preparation for communication and decision making

• Help patients understand their options– Tailor information:

• Literacy/language/culture

• Surrogate availability

• Preferences for decision making

• Measure broad range of ACP outcomes

Thank You!

• PREPARE: www.prepareforyourcare.org

• rebecca.sudore@ucsf.edu