Experiences and expectations of advance directives in gynecological cancer patients (the NOGGO-expression X study)

This study aimed to assess the experiences and expectations regarding advance directives among patients with gynecological cancer, with an additional focus on patients with migration backgrounds.

An anonymous, self-administered questionnaire comprising 38 multiple-choice questions on advance directives was distributed online and in paper form from May 2019 to April 2021 across Germany. Participants included women diagnosed with various gynecological tumors. The survey was available in German, Turkish, Arabic, and Russian to capture culture-specific differences.

Out of 718 participants, 355 (49.4%) reported having an advance directive. Patients with an advance directive were significantly older (64.5 years) compared to those without (56.0 years, p < .0001). Advanced tumor stage (Fédération Internationale de Gynécologie et d'Obstétrique III and IV) was not significantly associated with having an advance directive (OR 0.82, 95% CI 0.49 to 1.35, p = .43). Compared to women with ovarian/fallopian tube/peritoneal cancer, those with cervical cancer (OR 0.7, 95% CI 0.35 to 1.39, p = .31), endometrial cancer (OR 0.43, 95% CI 0.16 to 1.12, p = .09), and vulvar cancer (OR 0.58, 95% CI 0.16 to 2.04, p = .39) were less likely to have an advance directive. A total of 56.8% of patients believed their family doctor should initiate end-of-life care discussions. Among the 18.2% of women with migration backgrounds, there was a lower likelihood of having an advance directive (OR 0.61, 95% CI 0.35 to 1.03, p = .07) and a significantly higher desire for information and documentation about advance directives in their native language (p = .0001). A total of 330 (48.4%) patients reported that a conversation with their physician would be the most important way to receive information about end-of-life care and advanced directives.

This study highlights a substantial need for enhanced information and proactive discussions about end-of-life care among patients with gynecological malignancies, particularly emphasizing the pivotal role of family doctors in these conversations. Notably, women with migration backgrounds are disproportionately disadvantaged in accessing and understanding advance directives, underscoring the urgent need for information and documents about advance directives in their native language. It is therefore recommended that the medical team routinely and proactively address these relevant topics in discussions with their patients and that clinical guidelines should also reflect this.