Decision-making for percutaneous endoscopic gastrostomy among older adults in a community setting

OBJECTIVE: To describe clinical decision-making for percutaneous endoscopic gastrostomy from the perspective of patients, caregivers, and physicians. DESIGN: A prospective cohort study. SETTING AND PATIENTS: All patients aged 60 and older receiving percutaneous endoscopic gastrostomies in a defined community over a 16-month period. MAIN OUTCOMES MEASURES: Either patients or their surrogate decision-makers completed a semistructured face-to-face interview to map out the information gathering process, expectations, and discussants involved in the decision to proceed with gastrostomy feeding. Physicians completed a written questionnaire to determine their likelihood of recommending percutaneous endoscopic gastrostomy, their involvement in the decision-making and recommendation process, and sources of perceived pressure in the decisionmaking. RESULTS: We identified 100 patients who received percutaneous endoscopic gastrostomy during the study window and 82 primary care physicians who provided care in the defined community. The most common reasons for the procedure were stroke, neurologic disease, and cancer. Patients or their surrogate decision-makers reported multiple discussants, incomplete information, and considerable distress in arriving at the decision to proceed with artificial feeding. This distress was usually in the context of an acute and debilitating illness that often overshadowed the decision about artificial feeding. The decision for gastrostomy often appeared to be a "non-decision" in the sense that decision-makers perceived few alternatives. Physicians also reported considerable distress in arriving at recommendations to proceed with percutaneous endoscopic gastrostomy, including perceived pressures from families or other healthcare professionals. Physicians have clear patterns of triage for percutaneous endoscopic gastrostomy, but the assumptions underlying these patterns are not well supported by the medical literature. CONCLUSIONS: Patients, caregivers, and physicians are often compelled to make decisions about long-term enteral feeding under tragic circumstances and with incomplete information. Decision-makers typically do not perceive any acceptable alternatives. Because data on these patients' long term functional outcomes are lacking, decision-makers appear to focus primarily on the short-term safety of the procedure and the potential for improved nutrition.