The European Association for Palliative Care (EAPC) Early Researcher Award winner in 2023, Dr Ben Bowers, discusses his research, which aims to improve end-of-life care by developing the evidence base on anticipatory prescribing in the last days of life.
Ben is a clinical-academic community nurse. He is a Wellcome Post-Doctoral Fellow at the Primary Care Unit, University of Cambridge, and practices clinically as an Honorary Nurse Consultant in Palliative Care.
Anticipatory medication sounds like a helpful and appropriate intervention for people who are reaching the end of their life at home, or in a care home: but your research tells us it’s complicated. In a nutshell, what have you discovered?
The prescribing of anticipatory medications is not the simple ‘fix’ in controlling distressing symptoms that we as healthcare professionals often hope it to be.
The widespread practice and policy of prescribing anticipatory medications is based on a limited evidence base; primarily clinicians’ beliefs that access to the injectable medications in the home offers reassurance to all and provides effective, timely symptom relief.
My PhD research found it was commonplace to prescribe four standardised medications and doses, often weeks to months ahead of the patient’s death. Discussion with patients and family carers about the process of dying and the role of anticipatory medications in controlling symptoms was often vague, inadequate or even absent. Consequently, these injectable medications, including opioids, were simultaneously reassuring and a source of concern.
Although administered anticipatory medications were reported to have generally helped symptom control, some family carers were concerned about using them or experienced significant difficulties in persuading nurses to administer them to patients.
Can you tell us a bit about the risks in prescribing injectable anticipatory medications ahead of possible need?
This is a complex intervention requiring careful thought, discussion and regular reviews. Anticipatory medications can be helpful when the patient, family and clinicians agree on when to use them and their clinical appropriateness is regularly reviewed. However, clinician and institutional preferences to put prescriptions in place at the earliest opportunity can be counterproductive and unjustified. We found anticipatory medications are commonly prescribed weeks or even months before death, often with limited review of their continued appropriateness.
The storage of anticipatory medications in the home or care home for lengthy periods may have unintended consequences. Their presence can be reassuring and at the same time unsettling, reminding patients and their families of impending death. Patients and their families may worry that the injectable medications, especially opioids, could cause over-sedation and even hasten death. Their presence may be interpreted by visiting clinicians who are unfamiliar with the patient as a signal that care should focus on last-days-of-life care, even when this may not yet be the case. Putting in place injectable anticipatory medications is not always acceptable for patients and their families, or appropriate where there are concerns about possible drug misuse or diversion.
Should we change the way we manage the symptoms of people who are dying at home or in care homes?
The subject of anticipatory prescribing should be used as an opportunity to hold open, tailored and honest conversations about families’ concerns and the realities of dying, if patients and families indicate that this is their preference, rather than being used as a clinical tool to keep discussions vague. Conversations and decisions need revisiting as their situation and preferences change.
Robust integrated systems are required across community and primary care services to ensure that the suitability of prescribed anticipatory medications is reviewed regularly and that these drugs are administered when clinically appropriate.
Clinicians’ decisions to administer medication should take into consideration family carers’ insights into patient discomfort and distress, especially when individuals are no longer able to communicate their needs.
What research is needed next?
First of all, we need well-designed, observational clinical trials that investigate the last-days-of-life symptom profiles of patients dying from a range of conditions in the community. This would help to inform anticipatory prescribing guidance and decisions.
Prospective clinical trials that investigate the impact of anticipatory prescribing on patient symptom control and rates of crisis hospital admissions are also needed.
Crucially, we need to better understand the human factors that are involved in the safe, effective and timely use of anticipatory medications and to simplify systems where possible. I am doing just this as part of my Wellcome Post-Doctoral Fellowship.
You have been a community nurse for many years. Why did you want to do research and what were your stepping stones into research?
I wanted to improve person and family-centred care. It dawned on me that much of the evidence underpinning community nursing practice is based on expert consensus and limited research. So, I decided to further the evidence base in palliative and end of life care. This was a major pivot moment in my career and took courage and determination.
I started by asking questions about decisions to prescribe anticipatory medications and this led to completing an interview study as part of my Masters in Advanced Practice.
I loved research and went on to complete an NIHR Applied Research Collaboration Fellowship. This helped in securing a very competitive NIHR School for Primary Care Research PhD Fellowship with the University of Cambridge. My journey so far has been a brilliant grounding in clinical research, supported by inspiring research mentors.
Now I’m a clinical academic based at the Palliative and End of Life Care Research Group at the University of Cambridge’s Primary Care Unit and I practice part-time as an Honorary Nurse Consultant in Palliative Care with Cambridgeshire and Peterborough NHS Foundation Trust. I greatly value the questions colleagues ask in practice and the insights being clinical brings to my research. I also work nationally with the Queen’s Nursing Institute, helping develop community nursing research capacity.
What would you say to nurses who are thinking about moving into research; and are there any resources to help them?
Do get involved in research, it’s a great way to understand and improve care. Conducting research has valuable restorative and motivational properties too.
Go and find the people you really admire in your field of interest and contact them. Good research leaders will welcome your interest and ideas. They are very keen to get more clinicians involved, so reach out and go from there. Believe in your own abilities and make opportunities!
I co-founded and lead the QNI Community Nursing Research Forum. This is open to all UK-based nurses interested in community research and we now have over 600 members. You may find the Forum’s webpage resources hugely valuable in helping and supporting your research journey.
Congratulations on this EAPC award – what does it mean to you to have been selected for the award?
I’m delighted and amazed. It is a huge recognition of the value of nurse-led interdisciplinary research. High-quality research is a collective endeavour and journey; I have brilliant research mentors, colleagues and clinical champions helping me. It is incredible to know I’m making a difference to evidence-based palliative care internationally.
Each year, the EAPC Early Researcher Award recognises an early career researcher in the field of palliative care who is making an outstanding contribution to research and clinical practice.
More about Dr Ben Bowers.
Ben’s anticipatory prescribing papers
- Bowers B, Howard P, Madden B, Pollock K, Barclay S. Is end-of-life anticipatory prescribing always enough?British Medical Journal 2023; 381: p1106
- Bowers B, Antunes BCP, Etkind S, Hopkins S, Winterburn I, Kuhn I, Pollock K, Barclay S. Anticipatory prescribing in community end-of-life care: systematic review and narrative synthesis of the evidence since 2017. BMJ Supportive & Palliative CareOnline First: 26 May 2023
- 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 51(12): Online First
- Bowers B, Pollock K, Barclay S.Unwelcome memento mori or best clinical practice? Community end-of-life anticipatory medication prescribing practice: a mixed methods observational study. Palliative Medicine 2022; 36(1): 95-104
- Antunes B,Bowers B,Barclay S, Gallagher J, Conci R, Polak L. Community-based anticipatory prescribing during COVID-19: a qualitative study. BMJ Supportive & Palliative Care Online First: 1 June 2022
- Bowers B. Understanding community end of life anticipatory medication care. PhD Thesis. University of Cambridge 2021.
- Bowers B, Pollock K, Dickman A, Ryan R, Barclay S. Anticipatory syringe pumps: benefits and risks. BMJ Supportive & Palliative Care2021; 11: 303-304
- Bowers B, Barclay SS, Pollock K, Barclay S.General Practitioners’ decisions about prescribing end-of-life anticipatory medications: a qualitative study. British Journal of General Practice 2020; 70(699) e731-739
- Bowers B, Pollock K, Barclay S. Administration of end-of-life drugs by family caregivers during covid-19 pandemic. British Medical Journal2020; 369: m1615
- Bowers B, Ryan R, Kuhn I, Barclay S. Anticipatory prescribing of injectable medications for adults at the end of life in the community: A systematic literature review and narrative synthesis. Palliative Medicine2019; 33(2): 160-177
- Bowers B, Redsell S.A qualitative study of community nurses’ decision-making around the anticipatory prescribing of end-of-life medications. Journal of Advanced Nursing 2017; 73(10): 2385-94