Decision-making for percutaneous endoscopic gastrostomy among older adultsin 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 informatio n gathering process, expectations, and discussants involved in the decision to proceed with gastrostomy feeding. Physicians completed a written questi onnaire to determine their likelihood of recommending percutaneous endoscop ic 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 ga strostomy during the study window and 82 primary care physicians who provid ed care in the defined community. The most common reasons for the procedure were stroke, neurologic disease, and cancer. Patients or their surrogate d ecision-makers reported multiple discussants, incomplete information, and c onsiderable distress in arriving at the decision to proceed with artificial feeding. This distress was usually in the context of an acute and debilita ting 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 repo rted considerable distress in arriving at recommendations to proceed with p ercutaneous endoscopic gastrostomy, including perceived pressures from fami lies or other healthcare professionals. Physicians have clear patterns of t riage for percutaneous endoscopic gastrostomy, but the assumptions underlyi ng these patterns are not well supported by the medical literature. CONCLUSIONS: Patients, caregivers, and physicians are often compelled to ma ke 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 functio nal outcomes are lacking, decision-makers appear to focus primarily on the short-term safety of the procedure and the potential for improved nutrition .