The decision for advance directives among persons with end-stage renal disease

The Patient Self-Determination Act (PSDA, 1990) was intended to encourage all patients to communicate end of life decisions regarding medical care. For the purposes of this study, advance directives were defined as written statements by competent persons that express their preferences for a surrogate and/or for future medical care in the event that they become unable to participate in medical decision making (Renal Physicians Association/American Society of Nephrology, 1997). The literature shows that, while many dialysis patients support the concept of advance directives, few have completed a written advance directive (Swartz & Perry, 1999). Mendelssohn and Singer (1994) stated that there are features of the ESRD population that make advance directives both relevant and useful. Therefore, the purpose of this study was to describe the process by which persons with end-stage renal disease decide whether or not to complete written advance directives.; Twenty participants, 9 male and 11 female, between 31-86 years of age were interviewed using a focused interview guide. Ten had completed a written advance directive and 10 had not. Modified grounded theory methodology was employed. Five phases associated with the process of deciding whether or not to complete a written advance directive were identified. In "Opportunity" participants defined the term advance directive and described the invitation to complete a written advance directive. "Choosing for self" discussed how this decision was influenced by autonomy, privacy, age, gender, race, and spirituality. "Choosing for others" discussed the process as it related to significant others; including benefit, burden, and marital status. In the choosing for self and choosing for others phases, participants who had not completed a written advance directive explained why. "ESRD worldview" explored others' experience of loss, knowing others with advance directives, exposure to news media and world events, the relationship with physicians, expressing end of life care preferences; and discontinuation of dialysis. In the last category, "Post Decision Fears", participants discussed their fears and concerns since making the decision whether or not to complete written advance directives. The five categories were summarized in the core concept, "Balancing Autonomy and Community".