thinking ahead…i C lif iconversations across California

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

BRC i ila p j tBRC similar projectsFacilitated focus groups

2007

training, book, video, website

Coalition for Compassionate Care of CA End of life planning

2010 FEMAFEMACA Dept. of Developmental ServicesEmergency planning

2012 Boards For AllCA Regional Center, CA State Council on DisabilityNonprofit governance training

Pew Research Center surveyPew Research Center surveyThought given to end-of-life wishes

34. 

TER

1‐Ap

ril 8, 201

3. Q3

W RESEA

RCH CE

NT

r survey March 21

re not sh

own. PEW

w Research Ce

nter

g “don

’t know

” ar

Source: Pew

Those saying

great deal of thought some thought not very much/no thought

backgroundbackgroundconversations across California

Effective health literacy Accessible, functional information is needed.1Accessible, functional information is needed.

Limited LiteracyL h l h k l d

K K EE

Less health knowledge. Seniors: poorer health status and quality of life.2

Y Y

PPMost Californians would choose natural death at home. Few discuss or document preferences.

OOII

Current planning materials may not address the needs of those with health literacy limitations

NNTTSS 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

purposepurposeconversations 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.

d iadvisers

TEAMTEAMTEAMTEAM

Coalition of Compassionate Care, CA

Hospice Foundation of America

G t l tGerontology expert

Disability Rights Consultant

Sutter Health

f a afocus areasConversations 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?

th dmethod

Facilitated learning/focus groupsListen, discuss, record suggestions.

Convenience samplesV l lf l d li i d b h Volunteers self-selected, solicited by host.

Descriptive inquiryDescriptive inquiryPromotes understanding of the needs of the targeted audience. targeted audience.

Not generalized to population.

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

fi di ifindings: worrieswhat we learned -what we learned

Participants concerned or confused about:

N t h i h iNot having choicesPreferences misunderstood or ignored Starting family conversationsStarting family conversationsFamily disagreeing with end-of-life choicesAuthority of their healthcare agentAuthority of their healthcare agent

E d f lif t t t h t th h th d End-of-life treatments - what they are, when they are used Impact of completed documents (POLST, DNR, Advance Directive)

recommendationsrecommendationsW i i lWritten materials

Reference: usability.gov

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

sample material reviewsample material review

Participant Participant thoughtsthoughts

S lS lSingle TopicSingle Topic•• Key points onlyKey points only•• Shorter Shorter bookletbookletShorter Shorter bookletbooklet•• LifeLife--like photoslike photos•• Larger Larger fontfont

M “ hit ”M “ hit ”•• More “white space”More “white space”

sample online reviewsample online reviewMedical decision makinggwww.prepareforyourcare.org

Participant Participant thoughtsthoughts

Great videosGreat videosGreat videosGreat videos

FF li k t it li k t it•• FFewer clicks to use siteewer clicks to use site•• Fewer steps to reach Fewer steps to reach

action planaction plan

discoveriesdiscoveriesAll 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.

next stepnext step

Website for video, report and resourceswww.you-determine.org

Outreach activities -newsletters and social media:senior centers, health organizations,

i d di bilit d senior and disability advocacy groups,IHSS, APS