1. 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

2. 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

3. 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?

4. 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?

5. 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

6. Do Patients Understand the Forms?

7. 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

8. 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

9. Poor Understanding of Checkboxes

10. 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.”

11. Are Advance Directives Enough?

12. 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.”

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

14. Lack of Decision Support
• Advance Care Planning (ACP)
– Traditional focus: document life-sustaining
treatment preferences in advance directives.

15. 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.

16. 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

17. 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

18. • 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

19. 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

20. 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

21. 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%

22. Results
Identified 5 Themes to Prepare for
Decision Making for Serious Illness

23. (1) Identify a surrogate decision maker and
formally ask them to serve in that role

24. (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.”

25. (2) Reflect on past experiences and what is most
important in life to define goals for medical care

26. “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

27. (3) Prepare surrogates by discussing whether to
grant leeway or flexibility in decision making

28. (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…”

29. (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.”

30. (4) Tell other family and friends, and doctors,
about one’s decisions to prevent conflict

31. (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.”

32. (5) Ask questions of clinicians that focus on
the outcome of treatment

33. (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.”

34. Interactive, multi-media website

36. Creating PREPARE
• Expert panel
• Health Literacy
• Geriatrics & Palliative Care
• Behavior change
• 13 focus groups
• Patients & surrogates
• Cognitive interviews

37. Creating PREPARE
• Expert panel
• Health Literacy
• Geriatrics & Palliative Care
• Behavior change
• 13 focus groups
• Patients & surrogates
• Cognitive interviews
• Videos that model behavior: HOW

38. 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

42. 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

43. 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

44. 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

45. Need New Outcomes to Measure
Successful ACP
Behavior Change Pathway
Pre-contemplation Contemplation Preparation Action

46. Need New Outcomes to Measure
Successful ACP
Behavior Change Pathway
Pre-contemplation Contemplation Preparation Action
–Behavior Processes:
»Knowledge
»Contemplation
»Self-efficacy
»Readiness

47. 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

48. 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

49. 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%

50. 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

51. 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

52. • 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

53. • PREPARE website rated a 9 out of 10
(±1.9) for ease-of-use
PREPARE Rated Easy to Use

54. 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

55. 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

56. Thank You!
• PREPARE: www.prepareforyourcare.org
• rebecca.sudore@ucsf.edu