Supporting informal carers

Carers play a vital role in supportive, palliative and EOL care for patients with advanced respiratory conditions. They enable patients to be cared for, and even die, in their place of choice. However, this caring role comes at a cost in terms of psychosocial distress, physical and psychological health impacts (including carer mortality), and pressure on finances. Ensuring that carers are supported can ameliorate these effects. Healthcare professionals must respond to policy rhetoric and be dramatically better at identifying carers, working with them to assess and prioritise their support needs, and responding to and reviewing those needs. Evidence-based tools and approaches exist and can help, but are not a one-off exercise. Carers' needs may change as the patient's condition (or location of care) changes, or as carer health or systems change. Carers' needs may also exist beyond the patient's death. Clinical and academic researchers need to robustly develop and evaluate interventions for carers and include appropriate carer outcomes in evaluations of patient-targeted interventions.