New and Improved Advance Care Planning: Making it Easier for Patients and Clinicians

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 geriatri-

cian, 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 medical 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.,

power of attorney for health care). The forms also include questions about the person’s quality of life and what brings their life meaning and leaves space for people to explain their medical wishes. It is often the “why,” and not just the checkbox that can help guide families, friends, and clinicians during a crisis and at the bedside. These advance directive forms have been integrated right into the PREPARE website. This means that if people go through the PREPARE program and answer values questions about themselves, this information will automatically be populated onto an advance directive form. People can also go directly to an advance directive step to fill out the form online or download a form to fill out their wishes.

To make ACP easier for clinicians, it can be helpful to give patients easy-to-understand materials ahead of the visits as some people will be able to do some pre-planning ahead of time. This will help improve the quality of the ACP conversations as well as cut down on the time needed for education about ACP. For example, in our randomized trials of English and Spanish speaking older patients, we targeted the PREPARE intervention only to patients without providing any intervention or education to clinicians or asking them to do anything beyond their usual care. Our studies have found that over 98% of patients were able to engage in some form of ACP on their own, and when they did come to a clinic visit, they were nearly 50% more likely to bring up ACP to the clinician without prompting.

In addition to offering easy-to-read materials in patients’ own language prior to the visit, it can be helpful for clinicians to think about ACP in a step-by-step way. We created a free “Simple Scripts” guide on our PREPARE provider page to give clinicians examples of what they can say to start these conversations. When pressed for time, it can be helpful to ask about a surrogate decision maker (also called a proxy, medical representative, medical decision maker, durable power of attorney for healthcare, etc.) For example, clinicians can ask, “Who would you trust to help make medical decisions for you?” This can be followed up by asking if your patient has talked to the surrogate. This will either give you all the information you need about that person’s medical wishes or alert you to the need for more discussion. It can also be helpful to ask about prior advance directives as some patients may have these at home, have completed them during prior estate planning, or know what they are and may have some ideas about what they would write down. At further follow-up or when time permits, we have added other questions to the Simple Script guide to ease into asking patients about their medical wishes during a crisis.

Given all the demands on clinicians, we know the thought of more charting is also daunting. However, documenting your conversations, more than just “full code,” and adding even a little bit of context about the person and their preferences can help you, the patients’ family and friends, and other medical providers who may be taking on the care of this patient during a crisis.

Health systems can support these efforts as well by providing a central location in the electronic health record to document conversations as well as advance directive forms. Thinking about workflow is also key. ACP conversations can now be reimbursed, and there are ways to include other staff members, such as nurses, social workers, and chaplains, and still be able to bill if the billing clinician is involved. Health systems can also consider innovations such as sending ACP messages and providing links to ACP tools through patient portals. PREPARE pamphlets can even be given out at the front desk or at vaccine sites.

It is an exciting time for advance care planning with expanded and broader definitions and free and easy-to-use tools for patients and clinicians. We owe it to our patients to do all we can to ensure that peoples’ most cherished wishes, health care goals, and values are honored. We can do this by expanding access to easy-to-use advance care planning materials and taking care planning one step at a time.

Rebecca Sudore, MD is a geriatrician, palliative medicine physician and professor of medicine at UCSF. She is the creator and founder of PREPAREforYourCare.org—a free, online advance care planning program that includes video stories, easy-to-read state-specific advance directives in several languages, pamphlets for patients, and simple scripts clinicians can use to start advance care planning conversations. Contact: Rebecca.Sudore@ucsf.edu.