A user-friendly website and advance directive form given directly to patients can be highly effective in empowering older adults to plan for their future medical care without the need for significant health system resources, according to a new study from UC San Francisco.
Researchers found that between 25 and 35 percent of older adult patients had evidence of advance care planning in their medical records after receiving simple decision-making tools. In the study, one group was given an easy-to-read advance directive, a legal document that allows patients to record their wishes for future medical care. This group had a 25 percent increase in advanced care planning. A second group received the advance directive plus a user-friendly website called PREPARE For Your Care, producing a 35 percent increase. Neither intervention required any clinician involvement, training or education.
Patients who received the PREPARE website also reported significantly more engagement in advance care planning, such as having discussions with family, friends and clinicians, and feeling more confident and ready to have these conversations.
The study, which appears online May 18, 2017, in JAMA Internal Medicine, shows promise for efforts to increase advance care planning among older adults, revealing that patient-driven initiatives can empower people to make decisions about their care.
“These results have far-reaching implications for public health, demonstrating that we can support patients in planning for future medical care in very scalable ways,” said lead author Rebecca Sudore, MD, professor of medicine in the Division of Geriatrics at UCSF and staff physician at the affiliated San Francisco VA Health Care System.
Advance Care Planning Central to Better Care
Advance care planning allows people to communicate their values, goals and preferences for their future medical care and to prepare for medical decision making. Studies have demonstrated that patients who complete such planning have greater satisfaction with their care and are more likely to receive medical care aligned with their wishes.
However, roughly two-thirds of adults – even those with serious illness – have not engaged in advance care planning, according to the Centers for Disease Control and Prevention. Efforts to encourage such planning have faltered because many clinicians lack the training, time and resources to have these discussions, and patients often feel unprepared for medical decisions and are intimidated by complicated legal advance directive forms.
In the JAMA Internal Medicine study, Sudore and her colleagues conducted a randomized trial from April 2013 to July 2016 that studied 414 veterans living with chronic illness. Of those, 209 received the easy-to-read advance directive, and 205 received the advance directive and PREPARE For Your Care. Study participants were an average age of 71 and recruited from multiple primary care clinics in the San Francisco VA. The majority of study participants were men, but the population was otherwise diverse.
Nine months after enrollment, the researchers found that the medical records of both groups had high levels of new documentation of advance care planning forms and discussions. It was higher in the PREPARE group, which received both the website and easy-to-read advance directive, versus those given only the advance directive. Participants given PREPARE also self-reported higher engagement in advance care planning at each follow up.
“Advance care planning is much more than just a form; it is all about conversations and patients having a voice in their health care,” Sudore said. “What most excites us about this study is that our easy-to-use tools helped people engage in conversations about their medical wishes with their family, friends and clinicians. We want to break down barriers to advance care planning by providing resources people can use on their own. The goal is for people to be prepared for medical decision making and to feel empowered to speak up about who they are as a person and what is important to their health care.”
PREPARE: Easy Access to Advance Care Planning
PREPARE is an online resource in English and Spanish that helps people begin the process of planning for medical care and preparing for medical decision making. Created and tested with input from patients and caregivers from culturally diverse populations, it uses lay language and video stories to guide users through five planning steps focused on values, preferences and communication.
Reviewing each step takes an average of 10 minutes and results in a unique, printable “Summary of Wishes” that patients can share with their family and clinicians. It can be used on computers, tablets or smartphones.
The website has attracted more than 80,000 unique visitors from 115 countries since 2013. It is patient privacy compliant and can save personal preferences for future updating. It is free to the public and can be licensed through UCSF by health systems for systematic use.
The researchers note that older veterans were recruited from several clinics from the San Francisco VA, potentially limiting generalizability. Materials also were viewed in study offices with computer access, and study staff provided a reminder call. Therefore, the results may differ when patients view the materials at home without a reminder.
Other UCSF contributors to the JAMA Internal Medicine study were senior author Deborah Barnes, PhD, MPH, associate professor of psychiatry; John Boscardin, PhD, professor of medicine and epidemiology and biostatistics; Ryan McMahan, medical student; and Mariko Feuz and Mary Katen, geriatrics staff research associates.
The study was funded by the U.S. Department of Veterans Affairs. Other funding for PREPARE was provided by the California Health Care Foundation; Gordon and Betty Moore Foundation; Hellman Family Foundation; John and Wauna Harman Foundation; National Institutes of Health National Institute on Aging; American Cancer Society; National Palliative Care Research Center; S.D. Bechtel, Jr. Foundation; Stupski Foundation; and Tideswell at UCSF.