PURPOSE: This pilot study sought to address the significant paucity of information in the patient decision-making literature regarding knowledge and attitudes of young adults toward Advance Care Planning. Using a qualitative approach, we attempted to document several dimensions of preferences and views within a population well known for risk-taking behaviors, which may result in death, serious injury, and states of decisional incapacitation.

METHODS: Focus groups (n=6) with students from two Pittsburgh universities (n=57) were conducted in February-April 2006. The demographic characteristics of the most frequent subjects were female (75.4%), Caucasian (70.1%), and third year status (range=1-8). Using a semi-structured focus group guide, participants responded to questions related to the following topics: preferred Advance Care Planning options; ideal proxy characteristics and behaviors; hypothetical roles as a surrogate; and, perceptions and preferences for states of compromised health and decisional incapacitation. Content coding was performed independently by two reviewers in an iterative fashion until 100% consensus was achieved, and subsequent analysis was performed using the NVivo7 application.

RESULTS: Content analysis revealed high inter-subject variability and intra-subject inconsistency among participants within all domains analyzed. Subjects reported desires for Advance Directives, Durable Power of Attorney agreements, or a reluctance to perform any end-of-life decision-making. Rationales provided for these views ranged from absolute confidence in one's own beliefs and fears of potential uninformed or subjective proxy decision-making; comfort resulting from the transference of decision-making duties to a surrogate; to a denial of susceptibility to risk due to youth and vitality. A majority of the sample cohort was pessimistic about life in a Persistent Vegetative State (PVS), while some participants perceived these patients as subhuman. Lastly, many participants' responses revealed either misinformation regarding PVS, or a reluctance to acknowledge clinical facts of this condition.

CONCLUSIONS: The findings of this study underscore the need for a thorough, quantitative effort to examine this volatile population's familiarity and attitudes regarding decisional incapacitation and tools to ensure autonomous and/or shared decision-making. The diversity in responses suggests a heterogeneity of knowledge, preferences and motivators to action regarding Advance Care Planning.