A matter of survival—patients' and carers' perspectives on the decision to undergo pelvic exenteration surgery for locally advanced and recurrent rectal cancer

Abstract

AimPelvic exenteration is the only potentially curative treatment for patients with locally advanced or recurrent rectal cancer. This study aimed to investigate how patients decide to undergo such radical surgery.MethodThis qualitative study employed an exploratory interpretive design informed by hermeneutic philosophy. During semi‐structured interviews, individuals who had undergone pelvic exenteration at a specialised centre and their carers were asked to reflect on the decision‐making process around surgery.ResultsThirty‐eight interviews were conducted with 39 participants (34 patients and five carers). Four themes were identified. There really wasn't a choice—participants indicated that long‐term survival was their absolute priority, with many feeling that there was no alternative. Only one participant expressed decision regret due to the consequences of surgery. Grappling with the magnitude of surgery—despite extensive preoperative education and counselling, the enormity of the surgery and recovery experience was incomprehensible to participants until they were ‘in it’, with many surprised by a slow and protracted recovery. A spectrum of psychological states and support needs—participants reflected on their psychological state prior to surgery, identifying family or professional pre‐surgery counselling as sources of support. Understanding life after surgery—although most participants were willing to accept anything in order to survive, many identified the impact on bodily functions, body image and overall quality of life as important.ConclusionsLong‐term survival was the principal factor influencing the decision to undergo pelvic exenteration. Individualised preoperative counselling may improve patient preparedness for the consequences of surgery.