end-of-Life planning: Presentation describing the findings from five focus groups about what is important to seniors about planning, care and treatment. final report and video located at: http://you-determine.org/

1. thinking ahead…
i C lif iconversations across California

2. about usabout us
We assist underserved communities
• Increase access in policy making
• Facilitate community advocacy
• Create accessible training and tools• Create accessible training and tools
nonprofit governance
informed decision-making
self-determination

3. BRC i ila p j tBRC similar projects
Facilitated focus groups
2007
training, book, video, website
Coalition for Compassionate Care of CA
End of life planning
2010
FEMAFEMA
CA Dept. of Developmental Services
Emergency planning
2012
Boards For All
CA Regional Center, CA State Council on Disability
Nonprofit governance training

4. Pew Research Center surveyPew Research Center survey
Thought given to end-of-life wishes
34.
TER
1‐April 8, 2013. Q3
W RESEARCH CENT
r survey March 21
re not shown. PEW
w Research Center
g “don’t know” ar
Source: Pew
Those saying
great deal of thought some thought not very much/no thought

5. backgroundbackground
conversations across California
Effective health literacy
Accessible, functional information is needed.1Accessible, functional information is needed.
Limited Literacy
L h l h k l d
KK
EE
Less health knowledge.
Seniors: poorer health status and quality of life.2
YY
PP
Most Californians would choose natural death at
home. Few discuss or document preferences.
OO
II
Current planning materials may not address the
needs of those with health literacy limitations
NN
TT
SS needs of those with health literacy limitations.
1) “Health Literacy Implications of the Affordable Care Act.” Center for Health Care Strategies.
2) “Health Literacy Interventions and Outcomes: An Updated Systematic Review.”
SS

6. purposepurpose
conversations across California
Explore targeted audiences regarding experiences with endExplore targeted audiences regarding experiences with end-
of-life planning, decision-making and informational media.
Obtain suggestions about how tools and communication can
be improved to assist engagement in planningbe improved to assist engagement in planning.

7. d iadvisers
TEAMTEAMTEAMTEAM
Coalition of Compassionate Care, CA
Hospice Foundation of America
G t l tGerontology expert
Disability Rights Consultant
Sutter Health

8. f a afocus areas
Conversations across California
end-of-life planning focus/learning groups
What worries people?What worries people?
Understand basic treatment and care options?
(CPR H i P lli ti C )(CPR, Hospice, Palliative Care)
Understand purpose of documents?
(Advance Directive, POLST, DNR)
Best way to communicate information?Best way to communicate information?
Recommendations about user-friendly media?

9. th dmethod
Facilitated learning/focus groups
Listen, discuss, record suggestions.
Convenience samples
V l lf l d li i d b hVolunteers self-selected, solicited by host.
Descriptive inquiryDescriptive inquiry
Promotes understanding of the needs of the
targeted audience.targeted audience.
Not generalized to population.

10. l i plearning groups
CityCity LocationLocation agesages #’s#’sCityCity LocationLocation agesages # s# s
Sacramento Senior center 40-92 12
Chico/Paradise Senior center 40-85 16
Santa Barbara Community center 30-93 13
/ 6Fresno/Clovis Senior center 60-87 12
San Francisco Assisted living 65-85 29

11. fi di ifindings: worries
what we learned -what we learned
Participants concerned or confused about:
N t h i h iNot having choices
Preferences misunderstood or ignored
Starting family conversationsStarting family conversations
Family disagreeing with end-of-life choices
Authority of their healthcare agentAuthority of their healthcare agent
E d f lif t t t h t th h th dEnd-of-life treatments - what they are, when they are used
Impact of completed documents (POLST, DNR, Advance Directive)

12. recommendationsrecommendations
W i i lWritten materials
Reference: usability.gov

13. recommendationsrecommendations
“Be included in development of materials”p
• everyday languageeveryday language
• short booklets/single topic
• short videos, personal storiesshort videos, personal stories
• easy to use websites
• large type
Planning
materials large typematerials

14. sample material reviewsample material review
ParticipantParticipant thoughtsthoughts
S lS lSingle TopicSingle Topic
•• Key points onlyKey points only
•• ShorterShorter bookletbookletShorterShorter bookletbooklet
•• LifeLife--like photoslike photos
•• LargerLarger fontfont
M “ hit ”M “ hit ”•• More “white space”More “white space”

15. sample online reviewsample online review
Medical decision makingg
www.prepareforyourcare.org
ParticipantParticipant thoughtsthoughts
Great videosGreat videosGreat videosGreat videos
FF li k t itli k t it•• FFewer clicks to use siteewer clicks to use site
•• Fewer steps to reachFewer steps to reach
action planaction plan

16. discoveriesdiscoveries
All participants want:All participants want:
• Community conversation groups.
• More accessible resources.
• Centers to host more groups.
Help with:p
• How to choose a healthcare agent.
• Understanding treatment choices.
• What specific documents provide.

17. next stepnext step
Website for video, report and resources
www.you-determine.org
Outreach activities -
newsletters and social media:
senior centers, health organizations,
i d di bilit dsenior and disability advocacy groups,
IHSS, APS