Background: Advance care planning is nationally recognized as important for honoring patient wishes at the end of life. Despite this widespread recognition, many patients lack advance care planning and spend their last days in ways not concordant with their values. Moreover, traditional advance directives may provide only a partial context for patients’ belief systems relevant to end-of-life decision-making. This work assessed the use of a “What Matters Most” letter compared to a traditional advance directive in ascertaining patients’ end-of-life wishes and goals.

Methods: From September to November 2016, all patients admitted to Stanford Hospital who expressed interest in advance care planning based on an initial screen were randomized on a weekly basis to receive either a traditional advance directive or the “What Matters Most” letter. All advance care documentation was completed under the guidance of Stanford Spiritual Care. All patients were permitted to switch groups if they preferred an alternative form of advance care planning.

Results: Thirty-five “What Matters Most” letters were completed among 105 letters offered (response rate 33%), and forty-seven traditional advance directives were completed among 110 offered (response rate 43%, p = 0.20).  The most common reason for non-completion of both documents was hospital discharge (23% and 35%, respectively), followed by lack of interest (9% and 7%), prior advance care planning (9% and 6%), and lack of mental acuity (8% and 7%). Eight patients in the letter group (7%) opted to complete a traditional advance directive instead. Patients who completed the letter ranged from 19 to 96 years of age (mean age 57), and 26% had a prior advance directive. The majority expressed that family mattered most (71%), followed by religion (17%), hobbies (17%), being home (17%), friends (14%), and health (9%). Life milestones mostly focused around experiencing family events (e.g. “son’s graduation,” 74%). Other life milestones included travel aspirations (20%) and career ambitions (e.g. “open a barber shop,” 14%). Most patients preferred to handle bad news with open discussion (77%). In terms of specific interventions, there was great diversity in patients’ preferences on cardiac resuscitation, intubation, dialysis, and artificial feeding; however, most expressed a wish to be pain-free (81%), to be sedated if pain or distress were difficult to control (75%), and to die gently and naturally (66%). Half (49%) wanted hospice care. Most preferred the letter be used to guide their families (69%) compared to having their families override their wishes (23%). 

Conclusions: Hospitalized patients who expressed interest in advance care planning were generally receptive to completing a letter in lieu of a traditional advance directive. The “What Matters Most” letter may offer a more holistic picture of patients’ values, family dynamics, and cultural backgrounds that can help providers honor end-of-life wishes.