Advance directives in patients with head and neck cancer - status quo and factors influencing their creation

BACKGROUND: Advance Care Planning including living wills and durable powers of attorney for healthcare is a highly relevant topic aiming to increase patient autonomy and reduce medical overtreatment. Data from patients with head and neck cancer (HNC) are not currently available. The main objective of this study was to survey the frequency of advance directives (AD) in patients with head and neck cancer. METHODS: In this single center cross-sectional study, we evaluated patients during their regular follow-up consultations at Germany’s largest tertiary referral center for head and neck cancer, regarding the frequency, characteristics, and influencing factors for the creation of advance directives using a questionnaire tailored to our cohort. The advance directives included living wills, durable powers of attorney for healthcare, and combined directives. RESULTS: Four hundred and forty-six patients were surveyed from 07/01/2019 to 12/31/2019 (response rate = 68.9%). The mean age was 62.4 years (SD 11.9), 26.9% were women (n = 120). 46.4% of patients (n = 207) reported having authored at least one advance directive. These documents included 16 durable powers of attorney for healthcare (3.6%), 75 living wills (16.8%), and 116 combined directives (26.0%). In multivariate regression analysis, older age (OR ≤ 0.396, 95% CI 0.181–0.868; p = 0.021), regular medication (OR = 1.896, 95% CI 1.029–3.494; p = 0.040), and the marital status (“married”: OR = 2.574, 95% CI 1.142–5.802; p = 0.023; and “permanent partnership”: OR = 6.900, 95% CI 1.312–36.295; p = 0.023) emerged as significant factors increasing the likelihood of having an advance directive. In contrast, the stage of disease, the therapeutic regimen, the ECOG status, and the time from initial diagnosis did not correlate with the presence of any type of advance directive. Ninety-one patients (44%) with advance directives created their documents before the initial diagnoses of head and neck cancer. Most patients who decide to draw up an advance directive make the decision themselves or are motivated to do so by their immediate environment. Only 7% of patients (n = 16) actively made a conscious decision not create an advance directive. CONCLUSION: Less than half of head and neck cancer patients had created an advance directive, and very few patients have made a conscious decision not to do so. Older and comorbid patients who were married or in a permanent partnership had a higher likelihood of having an appropriate document. Advance directives are an essential component in enhancing patient autonomy and allow patients to be treated according to their wishes even when they are unable to consent. Therefore, maximum efforts are advocated to increase the prevalence of advance directives, especially in head and neck cancer patients, whose disease often takes a crisis-like course. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12904-022-00932-5.