Survival without transplant

Abstract 

Patients with severe cystic fibrosis who face lung transplant proposal react in different ways to the offer of this potentially life prolonging therapy. Little is known about those patients who refused the operation. This article describes various behaviour patterns and reactions following the transplant proposal. The major reasons for refusal of lung transplantation are based on personal experiences and encounters and on psychological and medical considerations. Only a subgroup of patients sticks to the initial decision of refusing the operation. Other patients question their decision and fluctuate between refusal and acceptance. A third group of patients reverses the decision mostly as a result of a significant life event. The decision not to undergo lung transplantation needs to be viewed as a reversible one and in the context of extreme physical and psychological vulnerability on the part of the patients. Health professionals should recognise the potential for change, remain non-judgemental and flexible, and adjust their services to the respective circumstances.

Keywords: Cystic fibrosis, Lung transplantation, Refusal, Psychology