'A little bitty spot and I'm a big man': patients' perspectives on refusing diagnosis or treatment for lung cancer

Abstract

Patient refusal of physicians' recommendations may partially account for variations in lung cancer treatment affecting survival. Reasons for refusal have not been well researched, and patients who refuse are often labeled derogatorily as irrational or enigmatically non-compliant. This study explored why patients refused recommendations for further diagnosis or treatment of lung cancer. We conducted in-depth interviews with nine patients, identified and recruited over a 2-year period, with documented refusal of doctors' recommendations. Recruiting was hampered by deaths, logistics, and refusal to participate. Questions focused on participants' understanding of disease, medical recommendations, and perceptions of decision-making. Transcripts were analyzed using a grounded theory approach. Participants emphasized self-efficacy, minimizing threat, fatalism or faith, and distrust of medical authority; explanations were often multi-dimensional. Comments included complaints about communication with physicians, health system discontinuities, and impact of social support. Explanations of participants' decisions reflected several ways of coping with an undesirable situation, including strategies for reducing, sustaining, and increasing uncertainty. Problematic Integration Theory helps to explain patients' difficulties in managing uncertainty when assessments of disease outcomes and treatment recommendations diverge. Implications for clinical communication include increasing trust while delivering bad news, understanding the source of resistance to recommendations, and discussing palliative care.