Advocacy at end-of-life research design: an ethnographic study of an ICU

BACKGROUND: Clinicians worldwide are being called upon to reconcile accountability for patient outcomes with the resources they consume. In the case of intensive care, contradictory pressures can arise in decisions about continuing treatment where benefit is diminishing. As concern grows about the cost effectiveness of treatment at end-of-life, nursing expertise and advocacy become significant factors in decision making. OBJECTIVES: To explore the potential for a nursing advocacy role within a specific regime of nursing practice: end-of-life care; specifically to examine the concept of nursing advocacy from the literature, to consider its application in the workplace and to assess the capacity for nurses to advocate for people who die in institutions such as intensive care units. DESIGN: Open-ended interviews with nurse managers and educators (4), palliative care specialists (2), chaplain (1), medical managers (2), intensives (7); focus groups with nurses (4 focus groups and 29 participants); patient case studies (13); observation of family conferences (6 conferences and 15 participants); observation of ward rounds (3 ward rounds and 11 participants). Total number of participants: 84. SETTING: A large ICU in a principal referral and teaching hospital in Sydney, Australia. PARTICIPANTS: Clinical staff within, and clinical and non-clinical caregivers external to the unit. METHOD: Qualitative, ethnographic study. RESULTS: Spurious economic imperatives, primacy given to medical intervention, conflict between medical and nursing clinicians about patient management and absence of nursing operational autonomy and organizational authority, impede the opportunity for nurses to define and enact an advocacy role. CONCLUSIONS: If nurses are to be effective patient advocates at end-of-life, they will need to develop clear criteria within which nursing assessments of patient status can be framed, the specialized skills to manage the non-medical needs of dying people and the organizational and political skills to negotiate changing clinical practice and workplace relations.