The communication experiences of persons referred to specialist palliative care services and their carers: A descriptive phenomenological study

Objectives. Effective communication during specialist palliative care (PC) referral is linked to improved health outcomes. Initiating a conversation about PC is difficult and poor communication can lead to stigma. The aim of this descriptive phenomenological study was to explore the communication experiences of persons referred to specialist PC services and their carers and explore strategies to improve such experiences. Methods. Purposive sampling was used to recruit 17 participants who were either receiving specialist PC and/or caring for someone who was receiving specialist PC. Participants were recruited from a hospice. Inductive thematic analysis was conducted. Results. Four themes were identified: (i) The why, who, what, when, where, and how of PC referral; (ii) initial thoughts and feelings about referral to PC; (iii) enhancing the communication of PC referral; and (iv) addressing practical needs during PC referral. Participants were referred either through their general practitioner or oncologist. Initially, participants linked PC referral to death. This perception changed when participants started availing of the services. Compassion, empathy, hope, privacy, in-person communication, individualized referral, and information dosing were identified as building blocks for effective communication. Participants stressed the importance of raising public awareness of PC and addressing the practical needs of individuals being referred. Significance of results. The communication of PC referral should be tailored to meet the individual needs of patients and carers. Delivering clear and simple information is important to help patients and carers understand and accept the referral.