Dr Ben Bowers is a Wellcome Post-Doctoral Fellow at the University of Cambridge. He is a practicing Community Palliative Care Nurse with research interests in understanding and improving end-of-life symptom control at home. Follow Ben on Twitter @Ben_Bowers__
Our new research published in Age and Ageing reveals the complexities of making anticipatory medications available for people nearing the end of life at home. Patients, informal carers and health 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 anticipatory 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. Recent research found these are in place for around half of adults dying at home or in care homes.
Our new qualitative research investigated the dying care of eleven patients through a series of interviews. The patients, aged between 65 and 94, were all prescribed injectable anticipatory 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, including during the last days of life and bereavement.
A source of unease as well as comfort
Anticipatory medications were simultaneously reassuring and unsettling. Most patients and informal caregivers 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 and maintain a sense of optimism.
Inadequate explanations
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 used by health professionals on prescribing 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, including on the internet, 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. In contrast, 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
Implications for clinical practice and research
Our research findings challenge the widespread perception that once anticipatory medications are available in 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 last-days-of-life symptoms and the medications. These conversations need revisiting as preferences change and the realities of dying at home unfold; particularly for older patients and their families experiencing protracted dying.
Future research is needed to understand how complex, nuanced decisions to use medication can be made more inclusive and to incorporate patient and informal caregiver experiences of illness and care. Nurse’s decisions to administer medications should take into consideration informal caregivers’ insights into patient discomfort and distress, especially when individuals are no longer able to communicate their needs.
COI: Dr Ben Bowers received funding from the National Institute for Health and Care Research (NIHR) School for Primary Care Research. This work was supported by the RCN Foundation Professional Bursary Scheme.
Reference
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. 08.12.22 https://doi.org/10.1093/ageing/afac293