Thinking ahead again plain final
1 like176 views
El informe del Board Resource Center resalta la dificultad de las personas para comprender los sistemas de salud, especialmente durante decisiones de fin de vida, con el 90% de los adultos encontrando difícil la información médica. Se llevaron a cabo grupos focales en cinco ciudades de California para evaluar la toma de decisiones al final de la vida y se identificaron barreras a la planificación y comprensión. Se recomienda que se desarrolle información y materiales más accesibles y fáciles de entender para mejorar la toma de decisiones informadas por parte de los consumidores.
Thinking ahead again plain final
- 2. 2 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
- 3. 3 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
- 4. 4 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
- 5. 5 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
- 6. 6 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
- 7. 7 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
- 8. 8 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.
- 9. 9 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
- 10. 10 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.
- 11. 11 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.
- 12. 12 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.
- 13. 13 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
- 14. 14 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
- 15. 15 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
- 16. 16 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
- 17. 17 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
- 18. 18 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.