The ‘work’ of managing medications when someone is seriously ill and dying at home: A longitudinal qualitative case study of patient and family perspectives’

Sage Palliative Medicine & Chronic Care

This episode features Dr Eleanor Wilson (Nottingham Centre for the Advancement of Research in End of Life Care, School of Health Sciences, University of Nottingham Medical School, Queen’s Medical Centre, Nottingham, UK) Managing medications at home can be a complex task involving ordering, collecting, organising, storing and taking medications correctly. Medication work must take place alongside ongoing management of household tasks, the physical and emotional labour of caring for someone who is dying and the impending loss of that person. Family caregivers are often assumed to be willing and able to take on the role of supporting patients to manage their medications at home, yet many are themselves older adults with serious health problems or adult children with many other conflicting roles and responsibilities. Knowledge of the ways that managing medications adds to the considerable burden of care and work that must be undertaken when someone is seriously ill and dying at home. Family caregivers are increasingly expected to undertake complex and technical medication tasks formerly carried out by professionals, but with little if any training, supervision or support; this trend has been exacerbated by COVID-19. The work of managing medications is critical to enabling patients to remain at home at the end of life. Health care professionals will benefit from a greater understanding of the complexities of medications management undertaken by patients and families in order to identify and tailor the support they can provide. Substantial reduction in the complexity and bureaucracy of Health and Social Care services is needed for them to be navigable for patients and families managing medications at the end of life. The lack of presence of Community Pharmacists in this research suggests there may be a greater role for them in supporting patients and families to manage medications at home.