Access provided by
London Metropolitan University
Anticipatory medicines can cause distress as well as bring reassurance and relief. Find out how to optimise their use
The complexities of making available anticipatory medications for people nearing the end of life at home are highlighted in our new research. The findings have many takeaway messages for nurses caring for people in their last days.
Nursing Standard. 38, 3, 39-40. doi: 10.7748/ns.38.3.39.s15
Published: 01 March 2023
Anticipatory medication packs contain injectable medicines including morphine and midazolam. These are often referred to by healthcare professionals as ‘just in case’ medications and are prescribed ahead of need, in case symptoms such as pain, nausea and breathlessness develop in the final days of life.
Other research found these are in place for around half of adults dying at home or in care homes.
Patients, informal carers and healthcare professionals we interviewed for our research reported that the presence of these medications could cause distress as well as comfort.
Some families also experienced difficulties persuading nurses to administer the medications to relieve pain.
We investigated the care of 11 patients through a series of interviews. The patients, aged between 65 and 94 years, were all prescribed anticipatory medications. Six of the patients themselves took part in at least one interview, along with nine informal carers, three GPs and three nurses. In total, 28 interviews were carried out, including during the last days of life and then bereavement.
We found anticipatory medications were simultaneously reassuring and unsettling.
Most patients and informal carers appreciated having injectable medications available in the home. But for some, the medications were viewed as an unwelcome reminder of impending death at a time when they were trying to cope with ever-changing circumstances, focus on living in the present, and maintain optimism.
One informal caregiver told us: ‘It’s a bit of a comfort to know that the anticipatory medication is there… It’s up in the corner and it’s out of the way, and I don’t look at it if I can help it.’
Most of the patients and informal carers felt they were in the dark about the purpose of the medications. They did not recall having a detailed conversation about what they were for or how they could be used.
The vague term ‘just in case’ used by healthcare professionals on prescribing did not help, and most of the patients and caregivers did not understand the purpose of injectable medications or the practicalities of managing symptoms in the last days of life.
Out of our participants, 11 said they had to search for information about medications, including online, and five participants took the opportunity to ask the researcher carrying out the interview what individual medications were for.
Another informal carer said: ‘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.’
Patients who could clearly express their preferences did not experience difficulties with nurses starting injections: their requests for medications were met swiftly. In contrast, five informal carers said they had to convince nurses to start injectable medications after patients appeared to be in pain or distress.
One informal carer 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 carer said that despite repeated attempts she was never able to convince nurses to give injectable medication for her friend’s significant pain and distress in the days before his death.
‘It upset me,’ she said. ‘The district nursing team should be communicating with us, asking us, and work as a team, but it just didn’t feel like that… The anticipatory medications were useless because nobody would give him anything.’
‘Prescribing of anticipatory medications is nuanced and complex, and requires tailored and honest discussion’
Informal caregivers typically reported that it was easier to persuade nurses to administer further doses once anticipatory medications had been started, as the first dose set a precedent.
Getting drugs administered during the night was largely uncomplicated, with nurses usually visiting within an hour of being phoned.
‘Ruth was quite distressed about the pain,’ said one informal carer. ‘I phoned the district nurse, and they were there within half an hour… They told me they were giving her a part dose of morphine, and if it wasn’t enough in an hour’s time or so to ring back and they could give her the other half.’
Our findings challenge the widespread perception that once anticipatory medications are in people’s homes, patients will receive timely and appropriate symptom control care.
The prescribing of anticipatory medications is a nuanced and complex intervention and requires tailored and honest discussion about dying, possible end of life symptoms and medications.
These conversations need revisiting, as preferences change and the realities of dying at home unfold, particularly for older patients and their families experiencing uncertainty and the protracted nature of the process.
Decisions by nurses to administer medications should take into consideration informal carers’ insights into patient discomfort and distress, especially when individuals are no longer able to communicate their needs.
More research is needed to understand community nurses’ views and experiences of complex, nuanced decisions to use medication. Research is also needed to understand how decisions to use medications can be more inclusive.
Anticipatory prescribing: how to use it to improve care of patients at the end of life rcni.com/anticipatory-prescribing
Study of community anticipatory medication prescribing for older patients anticipatory prescribing study
