End-of-life decision making is a delicate and often avoided undertaking. “Thinking Ahead: Conversations across California” is a project to learn from seniors and providers what worries them about end-of-life planning and decision making. One focus group participant said “I want to have a voice in deciding what the last few weeks of my life will be like. And, I want my wishes to be honored.” Read the short report to learn what is important to seniors.

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PLAIN LANGUAGE

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Authors
Mark Starford
Charlene Jones
Since 1994, the Board Resource Center’s (BRC) activities have
addressed education and training needs that increase leadership,
self-determination, and community inclusion. Our focus areas
include person-centered strategies and multi-media plain language
products that increase informed decision-making and engagement
in public policy making.
BRC was the primary facilitator for all focus groups, including
collecting, reviewing, and reporting outcomes related to Thinking
Ahead: Conversations across California.
BRC makes all our products available to the public and are
accessible to a variety of audiences. Videos, websites and training
booklets are available online: http://brcenter.org/lib_library.html
Direct comments to:
Board Resource Center
Thinking Ahead: Conversations across California
Post Office Box 601477 Sacramento, CA 95860
info@brcenter.org
This report and related videos can be found online at:
http://you-determine.org
© 2015 Board Resource Center. Sacramento, CA 95860

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Table of Contents
Report Summary ........................................................................... 4
Personal Story ................................................................................. 5
Purpose and Background ............................................................ 6
Methods and Findings .................................................................. 8
Recommendations ................................................................…. 11
Next Steps .................................................................................... 13
Discussion ..................................................................................... 15
Acknowledgements.................................................................... 16
Resource links ............................................................................... 17
End Notes ..................................................................................... 18

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Report Summary
Health-care systems and their resources are difficult to
understand, especially when a person is ill or is near the end of
life. It is a challenge when 9 out of 10 adults find it hard to use
information provided to make informed medical decisions.
The Conversations across California project gathered information
about how individuals made end-of-life decisions and if people
understood what their medical choices were.
BRC conducted focus groups in five California cities. Participants
included assisted living providers and residents, providers and users of
in-home supports, hospice and health care providers. Disability and
senior rights advocates also participated.
Group members shared what they knew about end-of-life care.
They were asked about end-of-life advance planning, and made
recommendations for user-friendly information.
They also talked about their worries, specifically
 Not having choices.
 Confusion about advance planning documents.
 Are healthcare agents required to follow your wishes?
End-of-life planning is a sensitive subject that many people avoid. It
requires careful communication and clear information. There needs
to be greater advocacy to encourage conversations so people
retain their self-determination.
“Despite advance directives, choices may not be honored.”
Participant

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Paramedics rushed an 85 year-old
woman to the hospital. Years before
she had completed Advance
Directive forms that identified what
she wanted at the end of her life. It
also stated who would be her health
care agent making decisions for her, if she could not. She did not
want any medical treatments to prolong her life, if she was not going
to recover. Her family and friends knew about her Advance Directive
and her choices.
At the hospital, doctors diagnosed a
life-threatening condition called
sepsis. They recommended surgery,
but it was risky. The woman’s
daughter, her health care agent, was
asked to give permission for the
surgery. Not ready to see her mother die, the daughter ignored her
mother’s stated wishes and said “yes” to the surgery along with
permission to provide any needed life sustaining treatments.
While in the operating room, the woman suffered a heart attack and
several strokes. She was dependent on a respirator to breathe, blind
and paralyzed. The daughter again ignored her mother’s Advance
Directive choices and approved more procedures.
Finally, after ten days of suffering, she passed away.
A Personal StoryPersonal Story

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Purpose and Background
Purpose
BRC worked with service providers and consumers to learn from them
about self-determination at the end of life.
BRC gathered information about barriers to understanding, and the
use of end-of-life planning tools. BRC also wanted suggestions about
“user-friendly” materials to better serve more people.
It is clear that patients and consumers need more accessible health
information.1 People who struggle with understanding health
information, use hospitals and emergency services more often. For
seniors, this can mean a poor quality of life.2
While 82 percent of Californians say it is important to put end-of-life
treatment choices in writing, many do not. More than half also report
they have not talked with loved ones about care they want at the
end of their lives.3
BRC believed it was important to learn how to improve written and
online information so more people can assert their choices, self-
determination and plan in advance.
“Self-Determination”
Making choices and decisions based one's personal interests. 1

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Background
An Adult Literacy Survey in 20034 reported that millions of adults in the
U.S. are not able to read and understand basic information. Other
surveys reveal nearly 9 out of 10 adults may not have the skills to
manage their health and prevent disease.6
They cannot:
 Read stories to their children, a newspaper article or map.
 Read correspondence from a bank or government agency.
 Fill out job applications or compete effectively for work.
Health literacy impacts a person’s ability
to understand diseases and disorders,
follow medical instructions, and make
informed decisions.7 The inability to care for oneself and lack of
planning can result in more emergencies and medical treatment that
a person may not want.
Need for Plain Language Design
Many factors, like education, language, age and learning ability, can
affect health literacy. However, health information can be designed
and made available so more people are able to use it.8
This requires plain language and user-centered communication. 9
“Health Literacy”
Managing basic health, including health-related materials".5

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Methods and Findings
Methods
Consumer involvement is the key to success with all care and support
services. BRC uses a person-centered approach. 10 It stresses the needs
and preferences of patients, consumers or stakeholders. This leads to
better outcomes for more people. BRC’s work also emphasizes “plain
language” that supports each individual’s right to informed decision
making.
Focus Groups
BRC identified participants for “focused learning” groups from five
California cities - Sacramento, Paradise (Chico), San Francisco, Santa
Barbara, and Clovis (Fresno).
Participants included assisted living providers and residents, in-home
support providers and consumers, hospice and health care services.
Advocates from the disability and senior communities also
participated.

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Focus group locations
Group members shared experiences with planning and end-of-life
decision making. They also gave suggestions for improving materials
and websites.
Focus group participants

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Findings
Focus group participants stressed the need for clear information and
more opportunities for conversations about end-of-life. They wanted
to feel respected, and be heard about their end-of-life decisions.
Participants felt it is important to communicate choices to family or
friends, not only their health care agent.
They were also concerned about:
Comments and concerns
• Disagreeing with family members or doctors is very difficult.
• Unwilling to talk about the subject with family.
• Advance directives can be ignored if hospitals do not prioritize
reviewing directives before treatments.
• In-hospital doctors typically do not check advance directives.

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Recommendations
Focus group participants provided suggestions about
improving written materials and making websites more user-
friendly.
They also offered ideas about ways to communicate and learn
about end-life-life topics.
Beginning the Conversation
 Start the conversation with family early, don’t wait.
 Need tips about how to start conversations.
 Ensure physicians use everyday language.
 Ask physicians for clarification (as many times as needed).
 Create opportunities for facilitated peer-to-peer discussions.
Best Way to Learn:
 With healthcare practitioners who use plain language.
 In a facilitated support group.
 Through the Internet; simple and easy access websites.
 In small peer-to-peer groups at local centers and residences.
 With family member or friend.

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Make Written Materials and Websites Usable:
 Only use everyday language.
 Short booklets, one page – one topic.
 Short videos with personal stories.
 Websites; few clicks, not too many words, one topic at a time.
 Large type, clear headings, bullet points.
 Be included in the development of all resources, not just focus
group.
Discoveries
 End-of-life planning documents were confusing.
 People signed forms and did not know what they agreed to.
 People worried their wishes may not be followed.
 Healthcare professionals left them confused after having a
conversation about choices.
 People want conversation groups, personal support and
clarification before deciding.
 A chosen health care agent may not honor wishes.
 Advance planning relieves personal and family worries.

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Next Steps
Practice
Because medical treatment and end-of-life choices can be difficult
to understand or imagine, more learning is key. Planning tools, like
Advance Directives, Powers of Attorney for Health Care, POLST, and
DNR orders can be confusing in how they work.
Consumers, patients, stakeholders and service providers must work to
improve tools and help facilitate people to use them. According to
the Centers for Disease Control and Prevention, 11 research says that
health information is currently presented in ways that are not
understandable by most Americans.
If health professionals want to reach people, they must assure
conversations, information, products, and services are accessible
and understandable.
They must be:
Accurate Accessible Actionable
Data Based
Organized
Consistent
Large Font
Headings
Bullets
Images
graphics
Action Steps
Support
Self-Driven
Outcome
“These things can be confusing, especially what form does what and
when?” Participant

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Policy
Twenty percent of the U.S. population will be 65 or older by 2050.12
With so many people approaching 65 years old, it is time to consider
new strategies:
 Information, products, and services must be accessible.
 Care decisions that are guided by consumers and patients, not
only by the health care systems.
 Person-centered programs developed to meet specific needs of
cultures and communities.
 Community organizations obtain funding and resources to sponsor
programs to educate consumers and care providers.
 Healthcare professionals learn the best way to communicate with
patients about end-of-life choices.
A poorly written booklet with too many words or a hard to use
website can be a primary reason why consumers avoid health
information.
http://www.americashealthrankings.org/senior

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Discussion
“Thinking Ahead across California” brought community members
together to hear about their experiences with end-of-life decision
making. BRC wanted to find out how information can be
communicated better and materials can be more user-friendly.
Focus group participants provided recommendations for
more understandable written and online information. They
suggested community centers and libraries create
opportunities for peer-to-peer conversations to better
understand options and learn how to plan well.
However, there were worries. Participants were troubled that
personal choices may not be honored by their healthcare agent or
hospital. In addition, using Advance Directives or other planning
documents like POLST left people uncertain about what these tools
are supposed to do and how they are different.
It became clear that self-determination suffers when there is
confusion about treatment and advance planning. Of significant
concern in all groups was the possibility that preferences could be
misunderstood or ignored.
These discoveries highlighted the renewed interest and need for
development of usable tools and new communication approaches
that follow good practice identified by the Center for Disease Control
and Prevention.
“You can present your planning for your end of life as a “gift” to
family and friends…” Participant

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We appreciate many individuals who contributed to this project.
Special thanks to the SCILS Group for providing funding. We wish to
acknowledge the following people for their assistance:
Advisors
Amy Tucci, CEO
Hospice Foundation of America
Judy Thomas, JD
Coalition for Compassionate Care of California
Brian Marsh,
MBA, MPH
Sutter Health
Molly Kennedy,
MPA
Disability Advisor
LeAnn Kingsbury,
MPA
Host Agencies
E.M. Hart Senior Center
Education/Activity Center
Sacramento, CA
Clovis Senior Activity Center
Education/Activity Center
Clovis, CA
Paradise Ridge Senior Center
Senior Community Center
Santa Barbara Village
Senior Community Center
Santa Barbara, CA
Martin Luther Tower
Senior Care Services
San Francisco, CA
Paradise, CA

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Resource Links
End-of-life Care in California “You don’t always get what you want
It’s Very Hard to Come to the Realization That You’re Dying.
Thinking Ahead: My Way, My Life, My Choice at the End
Centers for Disease Control and Prevention – Health Literacy
National Institutes of Health
http://theconversationproject.org
www.iom.edu/Reports/2014/Dying-In-America-Improving-Quality-
and-Honoring-Individual-Preferences-Near-the-End-of-Life.aspx
Prepare for Your Care
Hello, May I Help You Plan Your Final Months?
Advance Directives ”Planning Ahead-Advance Medical Directives
www.health.gov/healthliteracyonline
www.usability.gov

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End Notes
1. National Gateway to Self-Determination. “What is Self-Determination?”
2. S.A. Somers and R. Mahadevan (2010) “Health Literacy Implications of the
Affordable Care Act.” Center for Health Care Strategies, Inc.
3. N. D. Berkman, S.L. Sheridan, K.E. Donahue, D.J. Halpern, A. Viera, K. Crotty, A.
Holland, M. Brasure, K.N. Lohr, E. Harden, E. Tant, I. Wallace, M. Viswanathan M. (2011).
“Health Literacy Interventions and Outcomes: An Updated Systematic Review.”
4. California Health Care Foundation (2012). Final Chapter: Californians' Attitudes and
Experiences with Death and Dying.
5. U.S. Dept. of Education National Center for Education Statistics. (1993, 2003).
National Assessment of Adult Literacy. “A First Look at the Literacy of America’s
Adults in the 21st Century.” U.S. Dept. of Education National Center for Education
Statistics.
6. American Medical Association (1999). “Health literacy: Report of the Council on
Scientific Affairs.” Journal of the American Medical Association, 281(6), 552– 557.
7. U.S. Department of Education National Center for Education Statistics (2006).
National Assessment of Adult Literacy.” The Health Literacy of America's Adults:
Results from the 2003 National Assessment of Adult Literacy.”
8. S.C. Ratzan, R.M. Parker (2000). “Introduction.” In National Library of Medicine
Current Bibliographies in Medicine: Health Literacy. Pub. No. CBM 2000-1.
9. CommunicateHealth (2013). “Green Paper When It Comes to Health Information
Plain Language Is Not Enough.”
10. J. Kimble(2002).“Elements of Plain Language.”Michigan Bar Journal, 81:44-45.
11. Plain Language Commission (2010). Tips on Writing Plain English.
12. U.S. Department of Health and Human Services Office of Disease Prevention and
Health Promotion. “Quick Guide to Health Literacy Strategies.”
13. U.S. Census Bureau, (May 2010) “The Next Four Decade the Older Population in the
United States: 2010-2050.” U.S. Department of Commerce Economics and Statistics
Administration.