New evidence indicates the need to rethink anticipatory prescribing
This University of Cambridge Research Alert brings together new evidence on anticipatory prescribing, a widely used resource for healthcare professionals to help control distressing symptoms for people dying in the community.
The evidence identifies important problems with current practice in the UK and suggests system-level changes to tackle four areas for action.
The evidence is from research led by Dr Ben Bowers at the Palliative and End of Life Care Research group (PELiCam) at the Primary Care Unit, Department of Public Health and Primary Care, University of Cambridge.
See this Research Alert on our website
Background / New evidence / Four areas for action / Next steps for research Acknowledgments / References
Summary
Anticipatory prescribing is a widespread clinical intervention aiming to help control distressing symptoms for people dying of expected causes at home, or in care homes.
This is a complex intervention involving multiple steps, several layers of teamwork and nuanced, skilled judgements about both when to prescribe and how to use medication.
- The standardised medications and doses that are prescribed are not always clinically appropriate.
- The practice is prone to miscommunication and adverse patient safety events, especially when several healthcare professionals and services are involved.
- Anticipatory medication carries great symbolic and emotional impact for patients and families, signifying the imminence of death.
- The practice places a heavy burden of responsibility on family carers: they are expected to manage supplies, request use of medicines and securely dispose of them.
System-level changes are needed to ensure:
- Responsive communications between families and healthcare professionals;
- Clinically appropriate prescribing and administration of the medications;
- 24/7 access to community pharmacies and to healthcare professionals;
- Supportive clinical partnerships with family carers.
Background
Ensuring that patients die in comfort is an essential goal of end-of-life care. For the 51% of patients who die at home or in a care home in the UK, obtaining medical assessments and prescriptions for last-days-of-life symptom control, and drugs from pharmacies during lengthy overnight and weekend hours can be challenging and at times impossible. Dying in pain or distress is a cause of considerable concern for patients, their families and clinicians.
The National Institute for Health and Care Excellence (NICE) guidance advises prescribing anticipatory medicines as ‘early as possible’ for people who are likely to need symptom control in the last days of life.
Anticipatory prescribing is intended to optimise timely symptom control in the community and prevent crisis hospital admissions.
Anticipatory medicines are injectable drugs for five common symptoms: pain, breathlessness, nausea and vomiting, agitation and noisy respiratory secretions. These are typically prescribed by a GP and dispensed to a named patient.
In the UK it is standard practice for nurses or paramedics visiting patients at home to make a clinical assessment of need before deciding whether and when to administer anticipatory medicines for symptom control. Anticipatory medication administration authorisation charts often detail dose ranges, giving nurses and paramedics considerable discretion and clinical responsibility for decisions about medicines management for dying patients.
New evidence on anticipatory prescribing
New evidence, from research led by Dr Ben Bowers at the Primary Care Unit, Department of Public Health and Primary Care, University of Cambridge, shows that the presence of anticipatory prescriptions in the home or care home does not always result in timely and effective control of symptoms.
Anticipatory prescribing is widespread but we do not know to what extent it helps to control symptoms
The widespread practice of anticipatory prescribing and its underpinning policy is based on clinicians’ perceptions that the intervention offers reassurance to all involved and provides effective, timely symptom relief. These medications are prescribed for between 38% and 51% of people dying in the community. But there is inadequate evidence to draw conclusions about their clinical and cost-effectiveness and safety.
Standardised medications and doses prescribed ahead of need are not always clinically appropriate
It is commonplace to prescribe four standardised medications and dose ranges, often weeks to months ahead of death with limited review of their continued appropriateness once prescribed. These are often presented to patients as being ‘just in case’ of future need. However, the timing of such prescriptions is challenging, given the prognostic uncertainty for patients, especially those with non-cancer conditions such as dementia, multimorbidity and frailty in old age, where illness trajectories may be unpredictable and dying protracted. Even patients thought to be at the end of life may improve and live for several months.
“We’ve certainly had a few people [for whom] we’ve prescribed them [anticipatory medications] so early they’ve gone out of date.” (GP)
Not all dying patients need these drugs
Between 40% and 54% of patients prescribed anticipatory prescriptions do not go on to receive any of the medications.
The presence of the medication 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.
Delays and differing views can affect administration (use) even when anticipatory medications are in place
Once anticipatory medicines have been prescribed, it is often family members who initiate their use through requests for professional help to control distressing symptoms, particularly pain. The time from nurses receiving a family request to administer medication to giving the dose can vary greatly, with one UK multisite study reporting a median time of 105 minutes. Deciding when to administer medication can cause less experienced nurses considerable unease, and some nurses report that they lack the confidence to initiate injections or adjust doses. Family carers reported it is easier to persuade nurses to administer further doses once anticipatory medications had been started; the first dose is seen to set a precedent.
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.
“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.” (family carer)
Families and carers are often underinformed about anticipatory medication
The presence of anticipatory medication in the home can be simultaneously reassuring and unsettling, reminding patients and their families of impending death. Discussion with patients and family carers about the process of dying and the role of anticipatory medications in controlling symptoms are often vague, inadequate or even absent. Consequently, patients and their families can worry that the injectable medications, especially opioids, could cause over-sedation and even hasten death.
For some families, keeping anticipatory medications in their home may be unacceptable or inappropriate
The storage of anticipatory medications in the home or care home for lengthy periods may have unintended consequences and add to families’ concerns. 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.
“I think some patients find it reassuring, other patients I think find it about as reassuring as seeing a coffin propped up in the corner of the room. It’s about being sensitive to the individual patients and their needs and their wants as well.” (GP)
Families carry heavy responsibilities for anticipatory medications
Families carry out considerable work in managing medicines for dying patients, which is largely unseen by health professionals. They assume responsibility for accessing medication supplies and resupplies from community pharmacies and ensure professionals visit to give anticipatory medications when needed. Finally, bereaved families are expected to return unused drugs to a pharmacy for secure disposal at a particularly difficult time. It is not known what happens to much of the left-over medicines.
"This body of research clearly tells us that prescribing of anticipatory medications is not the simple ‘fix’ in controlling distressing symptoms that we as healthcare professionals often hope it to be."
"Anticipatory prescribing is a complex and sensitive intervention requiring careful thought, person-centred discussion and regular reviews, often across multiple community providers of care.”
– Dr Ben Bowers, University of Cambridge
Improving symptom control at the end of life: four areas for action
Anticipatory medications can be helpful when the patient, family and clinicians agree on when to use them and their clinical appropriateness is regularly reviewed.
But clinician, organisational and policy preferences to put prescriptions in place at the earliest opportunity can create problems. System-level changes are needed to address these problems.
1. Responsive communication between families and healthcare professionals
The subject of anticipatory prescribing should be used as an opportunity to hold open, tailored and honest conversations about patients’ and families’ concerns and the realities of dying, if they indicate that this is their preference, rather than being used as a clinical strategy to keep discussions vague. This requires a mind-shift in clinical cultures.
Community nurses and general practitioners require the skills and training to explore sensitively and confidently patient and family preferences for information and their concerns about the dying process. A suitably skilled clinician who knows the patient and family needs to revisit these subjects periodically and when situations and information preferences change.
2. Responding to changing clinical needs
Robust integrated systems are required across community and primary care services to ensure that the suitability of prescribed anticipatory medications and the dose ranges are reviewed regularly; and that these drugs are administered when clinically appropriate.
This involves the sharing of records across services, and regular interdisciplinary meetings between general practitioners, community nurses and specialist palliative care team members to discuss and respond to patients’ changing end-of-life care needs.
3. Providing support 24/7
It is essential that patients and their family carers have access to community nursing and doctor services 24 hours a day, seven days a week. These services need to have the resources to be able to provide responsive care and to visit to assess and address symptom control needs in a timely manner. This would improve patient and family confidence in systems and reduce the necessity to prescribe anticipatory medication too far in advance of potential need.
Some community pharmacies need to be adequately resourced to supply end-of-life drugs out of hours, including being available to dispense 24/7. This will prevent considerable delays and family distress in sourcing medication (re)supplies when needed, especially at night and during weekends.
4. Listening to the insights of families and carers
Community nurses and paramedics require consistent and comprehensive training in the recognition of, and appropriate responses to, end-of-life symptoms and the appropriate administration of anticipatory medications. This includes training in working in partnership with family carers and in recognising how to draw upon their insights when patients are no longer able to communicate their levels of comfort.
“Ruth was quite distressed about the pain … I couldn’t give her any more Oramorph because it had only been an hour or so since she’d had it … Therefore, 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. That’s basically all we needed to know really.” (family carer)
Family carers find it far easier to know when to contact the nurses to ask for anticipatory medication to be given once an unambiguous symptom control plan had been agreed by all.
Next steps for research
- 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. Well-designed observational studies are needed.
- Investigate the impact of anticipatory prescribing on patient symptom control and rates of crisis end-of-life hospital admissions.
- Identify and put in place optimal system-wide approaches so that anticipatory medications can be prescribed and used safely, effectively and at the right time. This is the focus of Dr Ben Bowers’ Wellcome Post-Doctoral Research.
Acknowledgements
Published by the Primary Care Unit, Department of Public Health and Primary Care, University of Cambridge 2023.
Author: Ben Bowers, Wellcome Post-Doctoral Fellow and Honorary Nurse Consultant in Palliative Care, Department of Public Health and Primary Care and Department of Engineering, University of Cambridge.
With Stephen Barclay, Professor of Palliative Care, Primary Care Unit, Department of Public Health and Primary Care, University of Cambridge, Lucy Lloyd (editor), Communications Manager, Primary Care Unit, Department of Public Health and Primary Care, University of Cambridge, Kristian Pollock, Professor of Medical Sociology, Nottingham Centre for the Advancement of Research into Supportive, Palliative and End of Life Care, School of Health Sciences, University of Nottingham.
Thanks to: John Clarkson, Andrew Carson-Stevens, Sarah Yardley, Barbara Antunes, Sam Barclay, Robert Brodrick, Riccardo Conci, Simon Etkind, Josh Gallagher, Sarah Hopkins, Paul Howard, Mike Kelly, Roberta Lovick, Bella Madden, Megha Majumber, Lloyd Morgan, Louisa Polak, Richella Ryan, Anna Spathis, Isobel Wilkerson, Isaac Winterburn.
Image credits (from top) the Queen’s Nursing Institute, Ben Bowers, Arek Socha/Pixabay, Queen's Nursing Institute, Nick Saffell.
Key references
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 Care 2023. Online First: 26 May 2023
Systematic review of the evidence published since 2017 concerning anticipatory prescribing of injectable medications for adults at the end-of-life in the community, to inform practice and guidance.
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 2022. 51(12): Online First
Longitudinal qualitative interview study investigating older patients’, informal caregivers’ and clinicians’ views and experiences of the prescribing and use of anticipatory medications.
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
Retrospective mixed methods observational study investigating the frequency, timing and recorded circumstances of anticipatory medications prescribing for patients living at home and in residential care.
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
Qualitative interview study investigating healthcare professionals’ experiences of delivering anticipatory prescribing during the first wave of the UK COVID-19 pandemic.
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
Qualitative interview study exploring GPs’ decision-making processes in the prescribing and use of anticipatory medications for patients at the end of life.
Antunes B, Bowers B, Winterburn I, et al. Anticipatory prescribing in community end-of-life care in the UK and Ireland during the COVID-19 pandemic: online survey. BMJ Supportive & Palliative Care 2020; 10: 343-349
Online survey investigating UK and Ireland clinicians’ experiences concerning changes in anticipatory prescribing during the COVID-19 pandemic and their recommendations for change.
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 Medicine 2019; 33(2): 160-177
Systematic review of the published evidence concerning anticipatory prescribing of injectable medications for adults at the end of life in the community.
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): 2385-2394
Qualitative interview study investigating community nurses’ decision-making processes around the prescribing of anticipatory medications for people who are dying.