Patient Perception, Preference and ParticipationMotivations, aims and communication around advance directives: A mixed-methods study into the perspective of their owners and the influence of a current illness

ObjectiveWhat are motivations of owners of an advance directive (AD) to draft an AD, what do they aim for with their AD and do they communicate about their AD?MethodsWritten questionnaires were sent to a cohort of people owning different types of ADs (n = 5768). A purposive sample of people suffering from an illness was selected from the cohort for an in-depth interview (n = 29).ResultsAbout half of our population had no direct motivation to draft their AD. Most mentioned motivation for the other half was an illness of a family member or friend. Many different and specific aims for drafting an AD were mentioned. An often mentioned more general aim in people with different ADs was to prevent unnecessary lengthening of life or treatment (14-16%). Most respondents communicated about having an AD with close-ones (63-88%) and with their GP (65-79%). In the interviews people gave vivid examples of experiences of what they hoped to prevent at the end of life. Some mentioned difficulties foreseeing the future and gave examples of response shift.ConclusionADs can give directions to caregivers about what people want at the end of life.Practice implicationsADs have to be discussed in detail by their owners and caregivers, since owners often have specific aims with their AD.