Ensuring Home-Based Palliative Care at the End-of-Life: Supporting Family Carers to Manage Anticipatory Medication

In 2019, around 124.000 Portuguese citizens were in need of palliative care (PC). Only 13% had access to specialized PC. Most of them only received PC within the last days or weeks of life. Patients at the end-of-life (eol) often experience uncontrolled and distressing symptoms, are under-medicated and do have adequate relief.

Managing symptoms is a shared goal for patients, family carers, and health professionals. To meet the needs of patients approaching the end of their lives who wish to be cared for at home, anticipatory prescribing (AP) has been promoted to optimise symptom control and prevent crisis hospital admissions. Family members provide much of the care that enables people to live and die at home as their illness progresses. Clinicians have to make ethico-clinical decisions to promote effective interventions that meet ethical principles and values.

Despite its relevance and implementation in clinical practice, anticipatory prescribing practices are currently based on an inadequate evidence base. Research is therefore very much needed on this highly relevant issue. Project EnSupCare aimed to fill this gap.

EnSupCare was designed to answer the following research question: What are the current practices, frameworks, and attitudes towards anticipatory prescribing in home palliative care at the end of life and is this an effective and cost-effective practice?

A mixed-methods approach was developed within five entwined work packages. Results from the project were presented in various international scientific events.