When the patient says No to transplant: A life well lived and well ended

Abstract: Background There is a paucity of literature on the clinician–patient dynamics when a patient declines referral to transplantation despite the team’s recommendation. Methods This case report describes a young woman with cystic fibrosis (CF) who declined referral to lung transplantation and relevant literature review. Findings Although initially the CF team struggled with the patient’s decision, the embedded psychiatrist was consulted and a multidisciplinary team meeting between patient, her family, and the medical team enabled the team to fully appreciate the patient’s viewpoint and to embrace and support her goals towards the end of life. The case also describes a modified dignity therapy conducted with this patient. Finally, the case describes the patient’s last phase of life with a dignified dying experience. Conclusions This report documents the first published case of modified dignity therapy work in people with CF. In addition, it provides an illustrative example of the team working with a patient declining life-prolonging transplantation and providing the patient with a dignified experience of last stages of life according to her goals and values.