Rapid changes in end-of-life care will affect patients at home and in care homes in the UK

Family members are being trained to administer drugs to end-of-life patients at home and in care homes in the UK, in case doctors or nurses are not available to give injections when needed. And new palliative care drugs are being considered for use during the COVID-19 pandemic, according to research carried out at the height of the pandemic.

Dr. Stephen Barclay and Dr. Barbara Antunes from the University of Cambridge undertook this UK-wide research to focus on how the pandemic might be causing clinicians to innovate or change their practice with patients at home and in care homes. 261 clinicians in all areas of the UK responded to an online survey in April 2020, including palliative care consultants and nurses, GPs, community nurses and pharmacists.

The survey, published today in BMJ Supportive and Palliative Care, focused on Anticipatory Prescribing of "Just in Case" medication—the prescription and dispensing of medications to a named patient, in advance of clinical need. But related issues also emerged.

The research indicates that more care for people close to the end of their lives is being undertaken remotely, with greater dependence on family caregivers both to provide care and administer medications. These changes are taking place in the context of infection risk from face-to-face consultations and visits for drug administration, and as shortages of staff emerged in some areas.

Marked changes in Anticipatory Prescribing were reported by approximately one-third of respondents. 38% reported changes in medications prescribed and 47% reported changes in the route of administration of medications—with consideration of mouth routes (buccal, sublingual) and skin patches (transdermal) and avoidance of subcutaneous (SC) injections. 37% of respondents indicated these changes were related to consideration of administration by family or social caregivers and to medication availability.

"Our research indicates that many areas of the UK are adopting suggestions in national policies to consider caregiver administration of medications. This is a big ask for family caregivers and has significant risks for their psychological welfare. Family caregivers may feel under pressure to undertake tasks normally undertaken by clinicians; assuming responsibility for administering medications heightens anxieties during an already emotional time."—Stephen Barclay, University Senior Lecturer at University of Cambridge

Changes in quantities of medications prescribed were reported by 35% and changes in doses and ranges by 29%. Some respondents described that some people dying with COVID-19 needed higher drug doses and more frequent administration to control their symptoms.

At the same time, clinical contact and patient assessment was reported to be changing to telephone or video, rather than in person, by nearly two thirds of respondents (63%). Telephone advice was reported as more available than previously by 49% of respondents.

"Reflecting broader changes in community end-of-life-care during the pandemic, more care is being undertaken remotely and electronically, with increased availability of advice for family caregivers 24 hours per day."—Barbara Antunes, lead author, Research Associate, University of Cambridge

Changes in prescribing for non-COVID-19 terminal illness, reported by 24%, reflected moves towards non-injectable routes for medications and concern that patients dying from COVID-19 might develop severe agitation.

Planned reductions in the use of syringe drivers, reported by 30%, reflected perceptions that the terminal phase in COVID-19 is brief and best managed with 'as needed' individual medication doses, as well as concerns that both district nurses and syringe drivers might be in short supply.

The research highlights problems in the supply of palliative care medications and there were strong calls for key changes in pharmaceutical legislation to get them to the right places at the right time. In a welcome development, recent UK guidance, issued on April 28 2020, now permits medication repurposing in care homes and hospices, as called for by many respondents in this survey.

Respondents also proposed wider access to anticipatory medications in localities to enable rapid response and symptom control and suggested that unused drugs could safely be returned to pharmacies for re-use. One respondent, a palliative care consultant, explained: "This is our opportunity to secure legislative change for the establishment of centralised supplies, the ability for clinical staff to have sensible safe boxes and for the return of safe, unused drugs to pharmacies."