An entrustment model of consent for surgical treatment of life-threatening illness: Perspective of patients requiring esophagectomy

Objective: Consent to treatment has been extensively discussed and prescribed from the viewpoint of law, ethics, and policy experts; the viewpoint of patients is less well represented. The purpose of this study was to describe the process of decision making and consent to surgical treatment from the patients' perspective, in the context of life-threatening illness. Methods: Face-to-face interviews with 36 patients who had recovered from esophagectomy for cancer at university hospitals in Toronto, Ontario, were analyzed by means of a qualitative analytic approach. Results: Instead of the accepted model of informed consent and shared decision making, patients identified 6 concepts that describe their experience: (1) cultural belief in surgical cure, (2) enhancement of trust through the referral process, (3) idealization of the specialist surgeon, (4) belief in expertise rather than medical information, (5) resignation to risks of treatment, and (6) acceptance of an expert recommendation as consent to treatment. These concepts were developed into a model of entrustment that unites the narratives of all our patients, Conclusions: There is a gap between accepted legal and ethical theories concerning consent and the patients' account of their experiences with surgical treatment of esophageal cancer. Although our findings should not be used to circumvent the ethical and legal requirements of the consent process and are limited to survivors of treatment of life-threatening disease, they support a careful reassessment of informed consent that includes the perspective of patients.