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Limited evidence for prescribing ‘just in case’ drugs for people dying at home

Dr Ben Bowers led a study which reviewed evidence for the clinical effectiveness and cost-effectiveness of  ‘anticipatory prescribing’ for people approaching the end of life at home or in care homes.

In standard anticipatory prescribing, which is commonplace in the UK, doctors prescribe a set of four key injectable medications to be left in patients’ homes, ‘just in case’ they are needed towards the end of life. They can then be administered when required by nurses, or sometimes by family members.

Healthcare practitioners believe that this approach offers reassurance and enables effective, timely relief for symptoms such as breathlessness, nausea, pain and agitation that may occur unpredictably towards the end of life.

"We need a better understanding of whether standardised prescriptions of four medications and set doses are appropriate, and whether they are regularly reviewed and tailored to individual need once medications are commenced” - Dr Ben Bowers  

The researchers wanted to discover whether the evidence for this widespread practice has strengthened in the last few years, since their 2017 review of literature on the topic, which concluded that practice and guidance was based on inadequate evidence. In this new review they studied 28 research papers, published since 2017, and found that big gaps remain in the evidence underpinning anticipatory prescribing.

One major problem is that little is known about the symptoms that dying patients experience in the community and how they change over time. Current prescribing recommendations have largely been developed from the symptom profiles of patients dying with terminal cancer in inpatient hospital and hospice settings and may not apply to other health conditions such as dementia and in community settings.

The researchers found that the current standardised medication packs may not include the most helpful medications and doses for patients at home or in care homes and there is little evidence to show how effectively they relieve symptoms.

Dr Bowers, Wellcome Research Fellow based in the University's Primary Care Unit, a member of the Palliative and End of Life Care Group in Cambridge who is also a practicing Honorary Nurse Consultant in Palliative Care said: "We need a better understanding of whether standardised prescriptions of four medications and set doses are appropriate, and whether they are regularly reviewed and tailored to individual need once medications are commenced. Research and nuanced clinical guidance to improve tailored anticipatory prescribing clinical decision-making is urgently needed.”

The review also revealed gaps in knowledge concerning how often medications are administered and how patient and their families view these medication packs. One study highlighted that the prescription of these medications is a very significant event for patients and family members, for whom their presence in the home signified the imminence of death. More information is needed on how anticipatory prescribing is experienced by patients and carers. It also found families are often unsure when to access professional help with symptom control. When they do, they commonly experience difficulties in arranging for nurses to visit to administer the injectable medications in a timely way.

Community nurses, at times, struggle with decisions to administer anticipatory medications and some less experienced nurses report being over-cautious when giving injections, fearing causing over-sedation or hastening death.

The cost effectiveness of anticipatory prescribing has been little studied to date. While it is a relatively low-cost intervention, up to 63 per cent of medications may go unused. Robust evidence of cost-effectiveness is urgently needed.

Dr Ben Bowers, who led this review, said: “Anticipatory prescribing certainly has an important place in the care of dying patients in the community. But it is a complex intervention, involving multiple steps, several layers of teamwork and nuanced, skilled judgements about both when to prescribe and when to use medication. The review of the research literature shows us that miscommunication can happen and adverse patient safety events can occur, especially when multiple healthcare professionals and services are involved”.

This study was primarily funded by Wellcome and the National Institute for Health and Care Research (School of Primary Care Research).

This is based on an article originally published by the University of Cambridge’s Primary Care Unit. It is reproduced under a Creative Commons Attribution 4.0 International License.