New research reveals the complexities of making ‘Just in Case’ medications available for people nearing the end of life at home. Patients, informal carers and healthcare professionals interviewed for the research said their presence could cause distress as well as comfort. Some families reported difficulties persuading nurses to administer the medications to relieve suffering.
The ‘Just in Case’ medication packs contain injectable medicines like morphine. They are prescribed in case symptoms such as pain, nausea and breathlessness develop when a person has become too weak to take oral medications. They are in place for around half of adults dying at home or in care homes in England.
The last days of life at home are hard to investigate and so how these medications are perceived by patients themselves and by their caregivers has remained a mystery to those without recent personal experience of care.”
– Dr Ben Bowers, lead researcher, Primary Care Unit, University of Cambridge, and community palliative care nurse
The thorough research investigated the end of life care of eleven patients through a series of interviews. The patients, aged between 65 and 94, were all prescribed ‘Just in Case’ injectable medications. Six of the patients themselves took part in at least one interview, along with nine informal caregivers, three GPs and three nurses. In total, 28 interviews were carried out, some during the last days of life and bereavement.
A source of unease as well as comfort
The results show that most patients and informal caregivers appreciated having injectable medications available in the home. But, for some, the medication pack was at the same time viewed as an unwelcome reminder of impending death at a time when they were trying to cope with ever-changing circumstances and maintain a sense of optimism.
Detailed explanations needed
Most of the patients and informal caregivers felt in the dark about the purpose of the medications. They did not remember having a detailed conversation about what they were for or how they could be used.
The vague term ‘Just in Case’ medications didn’t help, and most of the patients and caregivers didn’t understand the purpose of injectable medications or the practicalities of managing symptoms in the last days of life.
Eleven participants said they had to search for information about medications and five participants took the opportunity to ask the researcher carrying out the interview what individual medications were for.
“I actually Googled what they were, but it would have been nice for somebody, I think, to have just spent a short time explaining what they were.” Amelia, informal caregiver
Variable experiences of getting medications administered
Patients who could clearly express their preferences did not experience difficulties with nurses starting injections: their requests for medications were met swiftly.
But five informal caregivers said they had to convince nurses to start injectable medications after patients appeared to be in pain or distress.
Alice, an informal caregiver, was with her mother when she became particularly distressed. She recalled having to advocate strongly for injectable medications to be given when a nurse, who did not know her mother, visited the care home and assessed that they were not needed.
Another informal caregiver, Sarah, said that, despite repeated attempts, she was never able to convince the nurses to give injectable medication for her friend’s significant pain and distress in the days before his death. She said:
“It upset me … They [the district nursing team] should be communicating with us, asking us, and work as a team, but it just didn’t feel like that … They [anticipatory medications] were useless because nobody would give him anything.” Sarah, informal caregiver
However, getting drugs administered during the night was largely uncomplicated, with nurses usually visiting within an hour of being telephoned.
“Ruth was quite distressed about the pain… I phoned the district nurse, and they were there within half an hour … They told me that they were giving her a part dose of a morphine, and if it wasn’t enough in an hour’s time or so just to ring back and they could give her the other half.” Mark, informal caregiver
The findings challenge the widespread perception that once ‘Just in Case’ injectable medications are in patients’ homes, patients will receive timely and appropriate care.
The research team emphasise that the prescribing of injectable medications is a nuanced and complex intervention and requires tailored and honest discussion about possible last days of life symptoms and the medications. In particular, they suggest that nurses deciding whether to administer medications should carefully listen to informal caregivers’ insights into patient discomfort and distress, especially when individuals are no longer able to communicate their needs.
Dr Ben Bowers was funded by the National Institute for Health Research (NIHR) School for Primary Care Research. This work was supported by the RCN Foundation Professional Bursary Scheme. Professor Stephen Barclay is supported by the NIHR Applied Research Collaboration East of England at Cambridge and Peterborough NHS Foundation Trust.
Bowers B, Pollock K, Barclay S. Simultaneously reassuring and unsettling: a longitudinal qualitative study of community anticipatory medication prescribing for older patients. Age and Ageing. 8 December 2022. doi/10.1093/ageing/afac293
Lucy Lloyd, Communications, Primary Care Unit