Special Section: Palliative Care
NEW AND IMPROVED ADVANCE CARE PLANNING: Making it Easier for Patients and Clinicians Rebecca Sudore, MD As a palliative care physician and a primary care geriatrician, I know firsthand that it can be daunting to start conversations with our patients about their medical wishes, especially during time limited outpatient or inpatient visits. However, as the current COVID-19 pandemic has taught us, it is imperative that we begin these conversations early in the course of patients’ (people’s) life trajectory. It may help to know that the definition of advance care planning (ACP) is evolving and there are new tools to make advance care planning easier on patients and clinicians. On the heels of high-profile court cases concerning the right to have one’s wishes honored at the end of life (e.g., Quinlan and Cruzan), The Patient Self Determination Act, was passed in 1991. This Act requires healthcare entities who receive federal funding to provide information about advance healthcare directives. Although the goal of the Act was to honor patients’ wishes during serious and terminal illness, it resulted in a definition of ACP that focused on checkboxes and a one-time completion a of legal advance directive form with an emphasis on “code status.” Checkboxes are easy to measure, especially at the health system level, but they often do not adequately prepare the patient or their trusted decision makers for the myriad of medical decisions they may face over the life course. Furthermore, several large studies have shown that a focus only on advance directive forms has not resulted in increased ACP or improved satisfaction with care. The good news is that the advance care planning as a field has evolved over the last 30 years. Our research team at the University of California, San Francisco (UCSF) convened a large, interdisciplinary, international panel of experts in advance care planning to update the definition. The new definition, published in 2017, defines ACP as “a process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care.” This broader definition now includes actions such as conversations at the kitchen table or discussions with medical providers. In addition, our team and others have been calling to expand ACP even further to include preparation for people (whether “patients” or not) and their caregivers for communication and medical decisions making both NOW and for their future med-
10
ical care. In this model, advance directive documents and Physician’s Orders for Life Sustaining Treatment (POLST) are still important for patient care, but they are just one piece of a much larger puzzle. We must also help patients and families prepare for the medical decisions and discussions that patients may have with us about their care or with other medical providers they have never met, such as in the ER or hospital during a crisis. To make things easier, we and others have shown that if people are given easy-to-read health information they can understand, including in their primary language, they can start to engage in the ACP process on their own and before, during, or after clinical visits. To this end, our team at UCSF developed a free, easy-to-use website called PREPAREforYourCare.org. The PREPARE program is an easy-to-use, online, HIPAA-compliant, ACP program in English and Spanish that uses video stories to help prepare people for communication and decision making. It is available in English and Spanish and can be used by the public, by community and healthcare organizations, and medical providers. The program has five steps including (1) how to choose a medical decision maker; (2) how to decide what is most important in life; (3) how to decide on flexibility for the medical decision maker; (4) how to talk to others about your wishes; and (5) how to ask medical providers the right questions. Patients can pick and choose the steps that are right for them and each step, with the video stories, takes about 5-10 minutes. With concrete examples of how to start and have these planning conversations, PREPARE makes it easier for people of all backgrounds to engage in ACP. People can access the PREPARE program online via computer, smartphone, or tablet, and at a time and place that is best for them. The PREPARE program also has legally valid advance directive documents for all 50 states in English and Spanish, and for California, the forms are in 10 different languages. The PREPARE advance directive forms were co-created by patients, caregivers, and legal experts at UC Hasting College of Law and may look different than traditional forms. They are written at a 5th-grade reading level (the mean reading level of the elderly in the US), include pictures that help explain the text, and provide education about what makes a good medical decision maker (i.e.,
SAN FRANCISCO MARIN MEDICINE OCTOBER/NOVEMBER/DECEMBER 2021
WWW.SFMMS.ORG
