If you were faced with a serious medical decision what would you hope for? You may wish for a caring and trusted physician to help guide you through your treatment choices. But you may also hope that you had a solid foundation to fall back on to make these difficult decisions.
And, asking questions such as “What is most important in my life?” and “How do I want to live?” is a start to this process. To build a solid foundation to help with medical decision-making, however, takes some preparation.
Too often, questions about what is most important in life are asked and pondered when a person is already severely ill and experiencing stress from their illness. In those cases, the discussion can be harsh, hasty and confusing, resulting in a risk of medical treatments and decisions that do not honor the person’s wishes.
Rebecca Sudore, a geriatrician and palliative care physician at the San Francisco VA Medical Center, wants to support people and their loved ones to ponder these questions well before a medical crisis.
Dr. Sudore has developed methods to help people identify their deeply held values, prepare for complex medical decisions and to have thoughtful discussions about their wishes with their families and doctors. In the end, she wants people – especially vulnerable older adults – to have a say in their medical care.
“People are much more than their illnesses, and working with older adults in my respective geriatrics and palliative medicine fields allows me to focus on my top priority of understanding the patient as a person,” said Dr. Sudore, a UCSF associate professor of medicine and a scientist supported by the Veterans Health Research Institute – NCIRE.
A focus of her research has been on advance care planning – the process by which adults can designate a surrogate decision maker and communicate their wishes for future medical care. For many years, advance care planning has been riddled with complicated forms, few resources for patients, and an inability to get to the heart of peoples’ feelings, beliefs and desires about their current medical care and the treatments they may want if there were seriously ill or at the end of their life.
Dr. Sudore has helped to make advance care planning much easier – at the SFVAMC and nationwide. She has designed advance directive forms that are easy to understand, developed tools that enable patients to make informed decisions, and has helped to open the dialog on a topic that many consider taboo.
For her work, Dr. Sudore was awarded the American Geriatrics Society’s Outstanding Achievement for Clinical Investigation Award in May of this year. She was honored, not just for innovative research, but also for addressing critical health care issues faced by older adults.
With a rapidly aging population and increasing incidence of chronic and severe illnesses around the world, her insight and research are invaluable.
In 2013, Sudore developed a an easy- to- understand advance care website – called PREPARE (www.prepareforyourcare.org). In a step-by-step process, the website teaches users how to identify a potential surrogate or proxy decision maker, determine what is most important in life, talk to loved ones and make informed medical decisions.
PREPARE uses video to raise topics and demonstrate conversations, and the content – written at a fifth-grade reading level -- is easy to understand. It includes voiceovers of all text, closed-captioning for the hearing impaired and large fonts for those with poor vision. The website is culturally sensitive and features people from many ethnic backgrounds.
It also tailored to the 15 to 20 percent of Veterans who are socially isolated and may not have readily available surrogates.
After examining key questions and their own values, users can create a summary of their wishes and decisions that can be shared with doctors and loved ones before a health crisis strikes.
Over the years, Dr. Sudore’s work at the SFVAMC and in the San Francisco community showed that medical information can be too cumbersome, especially for older adults with limited literacy, This research sparked the development of the easy-to-read advance directives (http://www.iha4health.org/our-services/advance-directive/) and the PREPARE website.
She found in a randomized trial that English and Spanish-speaking patients from a county hospital in San Francisco much preferred the easy-to-read form over a standard advance directive and were able to double their completion rates from baseline. In pilot testing of the PREPARE website among low-income, computer naïve older adults, she also found that the website greatly increased people’s engagement in the advance care planning process.
The easy-to-read advance directive has been downloaded over 100,000 times, and since the release of the PREPARE website it has been accessed by more than 50,000 people in 115 countries.
Dr. Sudore hopes that someday, advance care planning will be “normalized” and not scary. “If advance care planning is focused on preparing people to get the medical care that is right for them at any age or stage of life, who wouldn’t want that?” Perhaps tools such as PREPARE could be introduced when people are younger, such as when they get a driver’s license, go to college or visit a primary care clinic.
Dr. Sudore has conducted focus groups with Veterans and surrogate decision makers, and her findings influenced the development of PREPARE and the easy-to-read advance directives. Still, she strives continually to create health education intervention for Veterans based on what she hears and learns from them.
A career in advocating for patients – not just treating illness – dates back to Dr. Sudore’s work as a medical student at UCSF. While working at a homeless clinic in San Francisco, she noticed that pamphlets and medical instructions could not be read or understood by many patients. Since then, she has worked with clinics, libraries senior centers, policy groups and others to create culturally and literacy appropriate tools and materials to help people understand medical information.
“An informed patient is an empowered patient,” said Dr. Sudore. Patient-centered care puts Veterans and their goals, not a disease, at the center of their medical care, and “the VA is a leader in this area.”
Dr. Sudore’s heart is in the right place. And the SFVAMC is the right place for her work.