thinking ahead…conversations across California

BRC: about us

We assist underserved communities

• Increase access in policy making

• Facilitate community advocacy

• Create accessible training and tools

nonprofit governance

informed decision-making

self-determination

BRC: similar projects

2007 Coalition for Compassionate Care of CA End of life planning

2010 FEMACA Dept. of Developmental ServicesEmergency planning

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

Facilitated focus groupstraining, book, video, website

Pew Research Center survey

Source: P

ew Research Ce

nter survey March 21‐Ap

ril 8, 201

3. Q34

. Those saying

 “do

n’t kno

w” are no

t sho

wn. PEW

 RESEA

RCH CE

NTER

Thought given to end-of-life wishes

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

backgroundconversations across California

Effective health literacy Accessible, functional information1

Limited LiteracySeniors: poorer health status and quality of life.2

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

Current planning materials may not address the 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.”

K EY

POINTS

Explore targeted audiences regarding experiences with end-of-life planning, decision-making and informational media.

Ask for suggestions about how tools and communication can be improved to improve informed decision-making and greater engagement in planning.

project purposeconversations across California

advisers

Coalition of Compassionate Care, CA

Hospice Foundation of America

Disability and Senior Rights Consultants

Sutter Health

TEAM

focus areasConversations across California

end-of-life planning focus/learning groups

What worries people?

Understand basic treatment and care options? (CPR, Hospice, Palliative Care)

Understand purpose of documents? (Advance Directive, POLST, DNR)

Best way to communicate information?

Recommendations about user-friendly media?

Facilitated learning/focus groupsListen, discuss, record recommendations.

Convenience samplesVolunteers self-selected, solicited by host.

Descriptive inquiryPromotes understanding of the needs of the targeted audience.

Not generalized to population.

method

participants

28 Assisted living residents

35 Independent seniors and their adult children

23 Users of in-home supports

14 Providers of hospice and healthcare services

City Location ages #’s

Sacramento Senior center 40-92 12

Chico/Paradise Senior center 40-85 16

Santa Barbara Community center 30-93 13

Fresno/Clovis Senior center 60-87 12

San Francisco Assisted living 65-85 29

learning groups

findings: worrieswhat we learned -

Participants concerned or confused about:

Not having choicesPreferences misunderstood or ignored Starting family conversationsFamily disagreeing with end-of-life choicesAuthority of their healthcare agent

End-of-life treatments - what they are, when they are used Impact of completed documents (POLST, DNR, Advance Directive)

recommendationsWritten materials

Reference: usability.gov

recommendations

“Be included in development of materials”

• everyday language• short booklets/single topic• short videos, personal stories• easy to use websites• large type

Planning materials

discoveriesAll participants want:

• Community conversation groups.• More accessible resources.• Centers to host more groups.

Help with:• How to choose a healthcare agent.• Understanding treatment choices. • What specific documents provide.

next step

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

Outreach activities -newsletters and social media:senior centers, health organizations, senior and disability advocacy groups,IHSS, APS