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

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 the carer rarely included. The absence of carers is problematic because the management of illness is often carried out in the context of complex networks of relationships. Although current policy encourages health care practitioners to work in partnership with family members, implementation is troubled by a lack of understanding of the significance of interpersonal relationships and interactions and the role of the relationship throughout the course of the illness experience. Despite awareness, there is little systematic, coherent analysis of the complexity of these interactional dynamics and, in particular, consideration of the implications for 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 of cancer. 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 through their actions during, before and after consultations with clinicians. Carers can act as conduits for information from patient to clinician and from clinician to patient. They can also act as facilitators during deliberations, helping patients to consider whether 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 treatment decision-making process. We propose the adoption of a relational approach by the inclusion of the carer in conceptual frameworks 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 in treatment decision-making.