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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 Story Personal 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.