Understanding community end of life anticipatory medication care

Abstract

The prescribing of injectable end-of-life anticipatory medications ahead of possible need has become established good practice in controlling distressing symptoms for patients dying in the community. The intervention aims to optimise timely symptom control, provide reassurance for patients and families and prevent crisis hospital admissions. However, in signifying the imminence of death, anticipatory medication carry great symbolic and emotional impact. Stakeholder perspectives, particularly those of patients and informal caregivers, have not been investigated in detail. This thesis examines the practice of prescribing and using anticipatory medications in the community in England and patient, informal caregiver and clinician perspectives of this care.

My systematic literature review identified that anticipatory medication policy and practice is founded on an inadequate knowledge base. Current practice is based primarily on clinicians’ beliefs that anticipatory medications offer reassurance to all, facilitate effective symptom control and prevent undesired hospital admissions. The views and experiences of patients, informal caregivers and general practitioners (GPs) have not been adequately investigated; neither has the clinical effectiveness, cost-effectiveness and safety of prescribing anticipatory medication.

In the light of my review, I then investigated community anticipatory prescribing and administration practices and perspectives of care through three sequential studies in two English counties. I undertook interviews with GPs, examined documented care in deceased patients’ clinical records, and conducted longitudinal interviews with patients, their informal caregivers and clinicians. Triangulation of these data revealed that prescribing practices reflected the structures and culture of community healthcare rather than being particularly person-centred. Discussion with patients and informal caregivers of the process of dying and the role of anticipatory medications in controlling symptoms was often vague, inadequate or even absent. Some patients and informal caregivers expressed ambivalence about the medicines and perceived that they might hasten death. The prescribing of standardised drugs and doses and of anticipatory syringe pumps, often weeks to months ahead of the patient’s death, had unintended consequences for care experiences and patient safety. Although administered anticipatory medications were reported to have generally helped symptom control, some informal caregivers reported difficulties in persuading nurses to administer them to patients.

Clinician and institutional preferences to put prescriptions in place at the earliest opportunity can be counterproductive and are unjustified. Anticipatory medications are a nuanced and complex intervention, which needs careful tailoring to the preferences and experience of patients and families and regular review as situations change. Nurses’ decisions to administer medication should take into consideration informal caregiver insights into patient comfort, especially when patients can no longer communicate.