Treatment decision-making in cancer care: The role of the carer

Abstract

Aims and objectives. This study explores the role of the carer in treatment decision-making in cancer care.Background. Literature about involvement in treatment decision-making tends to focus on patients and clinicians, with thecarer rarely included. The absence of carers is problematic because the management of illness is often carried out in the contextof complex networks of relationships. Although current policy encourages health care practitioners to work in partnership withfamily members, implementation is troubled by a lack of understanding of the significance of interpersonal relationships andinteractions and the role of the relationship throughout the course of the illness experience. Despite awareness, there is littlesystematic, coherent analysis of the complexity of these interactional dynamics and, in particular, consideration of the implicationsfor involvement and treatment decision-making.Design. Qualitative, longitudinal.Methods. Three serial semi-structured interviews with 66 patients and 43 carers within the first year following a diagnosis ofcancer. A descriptive and thematic approach to data analysis was adopted.Results. Carers are involved in treatment decision-making in cancer care and contribute to the involvement of patients throughtheir actions during, before and after consultations with clinicians. Carers can act as conduits for information from patient toclinician and from clinician to patient. They can also act as facilitators during deliberations, helping patients to considerwhether to have treatment or not and which treatment.Conclusions. Our study has highlighted the deficiency of models that fail to acknowledge the role of the carer in the treatmentdecision-making process. We propose the adoption of a relational approach by the inclusion of the carer in conceptualframeworks and recommend triadic (patient, carer and professional) models of involvement.Relevance to clinical practice. Cancer care clinicians should recognise and actively involve the carer as well as the patient intreatment decision-making.