Parenteral nutrition in advanced cancer: A qualitative study on decision-making and information needs of patients and carers

Abstract

Objectives To identify the information needs of people with advanced cancer, and their carers, to make an informed decision to commence or discontinue parenteral nutrition (PN). Methods Semi-structured interviews with people who had advanced cancer and were receiving PN, and their informal carers were audio-recorded with consent and transcribed verbatim. Analysis was conducted using a framework analysis approach. Patients were recruited via four hospitals including a cancer centre and intestinal failure units. Carers were recruited via recruiting hospitals, advertisement on social media and support group forums. Results Interviews were conducted with five patients and six carers. Five overarching themes were identified: factors affecting the decision: lack of choice and the importance of hope and advocacy, communication and information: whose role is it?, tackling discussions around benefits, risks and challenges of PN, the reality of living with home PN and neglected conversations: stopping PN and advance care planning. Patients and carers suggested essential information provided should include how to recognise complications, what to expect with home PN, and the risks and benefits of PN. They also recommended ways to improve service delivery including identification of the professional responsible for PN, improving communication through multiprofessional meetings and establishing a clear home PN pathway and service specification. Conclusions This study has identified information that patients with advanced cancer and their carers need to make decisions around commencing and discontinuing parenteral nutrition. This knowledge can contribute to the development of decision tools to support shared decision-making among patients, carers and healthcare professionals.