The financial costs of anticipatory prescribing: A retrospective observational study of prescribed, administered and wasted medications using community clinical records.

BACKGROUND: The prescribing of injectable end-of-life anticipatory medications ahead of possible need is recommended best practice. The financial costs of these medications have been little studied. AIM: To identify the costs of anticipatory medications prescribed, used and not used for patients approaching the end-of-life at home and in residential care. DESIGN: Retrospective observational study using general practitioner and community nursing clinical records. SETTING/PARTICIPANTS: Data were collected from eleven general practitioner practices using the records of the 30 most recent deaths per practice. Patients were aged 18+ and died between 2017 and 2019 from any cause except trauma, sudden death or suicide. RESULTS: Anticipatory medications were prescribed to 167/329 patients, of which 164 were included in the analysis. Costs (GBP) were analysed both at patient-level and drug-level. Median anticipatory prescription cost was £43.17 (IQR: £38.98-£60.47, range £8.76-£229.82). Median administered (used) drug cost was £2.16 (IQR: £0.00-£12.09, range £0.00-£83.14). Median unused (wasted) drug cost was £41.47 (IQR: £29.15-£54.33, range £0.00-£195.36). Prescription, administered and unused costs were significantly higher for the 59 patients prescribed an anticipatory syringe driver. There were wide variations in the unused costs of individual drugs; Haloperidol and Cyclizine contributed 49% of total unused costs. CONCLUSION: The costs of prescribed and unused anticipatory medications were higher than previously reported but remain modest. Usage of prescriptions was lower than previously documented. There may be scope to reduce the quantity of vials that are routinely prescribed without adversely affecting care; further research is needed to investigate this possibility.

Family carers' administration of injectable medications at the end of life: a service evaluation of a novel intervention.

Timely and safe administration of injectable medications for patients at home is vital in optimally managing distressing symptoms in the final days of life. This article discusses a service evaluation of family carers' (including close friends) administrating subcutaneous end-of-life medications. The procedure was not intended to become normal care, rather the exception when appropriate and needed, with 24/7 skilled support from community nursing and palliative care services. A service evaluation of the procedure was undertaken in rural and urban areas in the South East of England. The procedure ran over 6 months and used detailed processes with recruitment criteria to mitigate risk of harm. In total, 11 patients participated with their family carers, including five carers with experience in healthcare roles. Of the 11 family carers, 10 were able to administer injections safely with structured training and support in place. Patients received timely symptom relief and their family carers were able to support loved ones by administering injectable medications rapidly without waiting for a nurse to arrive. This was particularly welcomed in more rural areas where waiting times were greater due to the large geographical area covered and limited staff availability during out-of-hours periods. The findings informed a carefully monitored wider rollout and ongoing evaluation in adult community nursing services in the NHS Trust.

Simultaneously reassuring and unsettling: a longitudinal qualitative study of community anticipatory medication prescribing for older patients.

BACKGROUND: The prescription of injectable anticipatory medications is widely accepted by clinicians to be key in facilitating effective last-days-of-life symptom control. Community end-of-life care and admission avoidance is particularly strongly advocated for older patients. However, patient and informal caregiver views and experiences of anticipatory medication have been little studied to date. OBJECTIVE: To understand older patients', informal caregivers' and clinicians' views and experiences of the prescribing and use of anticipatory medications. DESIGN: Qualitative study. SETTING: Patients' homes and residential care homes. PARTICIPANTS: Purposive sample of six older patients, nine informal caregivers and six clinicians. METHODS: Multi-perspective, longitudinal interview study based on 11 patient cases. Semi-structured interviews (n = 28) were analysed thematically. RESULTS: Three themes were identified: (i) living in the present whilst making plans: anticipatory medications were used by clinicians as a practical tool in planning for uncertainty, while patients and informal caregivers tried to concentrate on living in the present; (ii) anticipation of dying: it was rare for patients and informal caregivers to discuss explicitly the process and experience of dying with clinicians; and (iii) accessing timely care: the use of anticipatory medications generally helped symptom control. However, informal caregivers reported difficulties in persuading nurses to administer them to patients. CONCLUSIONS: Anticipatory medications are simultaneously reassuring and a source of unease to older patients and their informal caregivers. Prescriptions need careful discussion and tailoring to their preferences and experience. Nurses' decisions to administer medication should consider informal caregivers' insights into patient distress, especially when patients can no longer communicate their needs.

Unwelcome memento mori or best clinical practice? Community end of life anticipatory medication prescribing practice: A mixed methods observational study.

BACKGROUND: Anticipatory medications are injectable drugs prescribed ahead of possible need for administration if distressing symptoms arise in the final days of life. Little is known about how they are prescribed in primary care. AIM: To investigate the frequency, timing and recorded circumstances of anticipatory medications prescribing for patients living at home and in residential care. DESIGN: Retrospective mixed methods observational study using General Practitioner and community nursing clinical records. SETTING/PARTICIPANTS: 329 deceased adult patients registered with Eleven General Practitioner practices and two associated community nursing services in two English counties (30 most recent deaths per practice). Patients died from any cause except trauma, sudden death or suicide, between 4 March 2017 and 25 September 2019. RESULTS: Anticipatory medications were prescribed for 167/329 (50.8%) of the deceased patients, between 0 and 1212 days before death (median 17 days). The likelihood of prescribing was significantly higher for patients with a recorded preferred place of death (odds ratio [OR] 34; 95% CI 15-77; p < 0.001) and specialist palliative care involvement (OR 7; 95% CI 3-19; p < 0.001). For 66.5% of patients (111/167) anticipatory medications were recorded as being prescribed as part of a single end-of-life planning intervention. CONCLUSION: The variability in the timing of prescriptions highlights the challenges in diagnosing the end-of-life phase and the potential risks of prescribing far in advance of possible need. Patient and family views and experiences of anticipatory medication care, and their preferences for involvement in prescribing decision-making, warrant urgent investigation.

The known unknowns of assisted hydration at the end of life.

Much is unknown about assisted hydration at the end of life: why rates of usage vary so highly between institutions, cultures and countries, what beneficial or burdensome effects this treatment has, whether there is a place for subcutaneous hydration in the home setting, and how best to communicate about this difficult topic with dying people and their families. In light of a recently published systematic review concerning the impact of assisted hydration at the end of life, this article explores these questions and related issues, concluding that individualisation and shared decision-making are essential aspects of high-quality end-of-life care.

Getting anticipatory prescribing right in end-of-life care.

There is a growing number of people who need access to high-quality endof-life care in the home setting. This requires timely assessments of needs, ensuring good symptom management and recognising the roles undertaken by carers. For some patients, a range of medications may need to be put in place to relieve end-of-life symptoms, using 'anticipatory prescribing'. District nurses must ensure that they acknowledge the patient's voiced preferences and be mindful of the safety issues that arise with the supply of controlled drugs in the home. This article highlights the challenges faced by district nurses providing or dealing with anticipatory prescribing during end-of-life care.

A qualitative study of community nurses' decision-making around the anticipatory prescribing of end-of-life medications.

AIMS: The aim of this study was to explore community nurses' decision-making processes around the prescribing of anticipatory medications for people who are dying. BACKGROUND: Community nurses frequently initiate the prescribing of anticipatory medications to help control symptoms in those who are dying. However, little is known about their decision-making processes in relation to when they instigate anticipatory prescribing and their discussions with families and General Practitioners. DESIGN: A qualitative interpretive descriptive enquiry. METHODS: A purposive sample of 11 Community Palliative Nurses and District Nurses working in one geographical area participated. Data were collected between March and June 2016 via audio recorded semi-structured interviews and analysed inductively using Braun and Clarke's thematic analysis. RESULTS: Three themes were identified: (1) Drugs as a safety net. Anticipatory medications give nurses a sense of control in last days of life symptom management; (2) Reading the situation. The nurse judges when to introduce conversations around anticipatory medications, balancing the need for discussion with the dying person and their family's likely response; (3) Playing the game. The nurse owns the decision to initiate anticipatory medication prescribing and carefully negotiates with the General Practitioner. CONCLUSION: Nurses view pain control through prescribed medication as key to symptom management for dying people. Consequently, they own the role of ascertaining when to initiate discussions with families about anticipatory medicines. Nurses believe they advocate for dying person and their families' needs and lead negotiations with General Practitioners for medications to go into the home. This nurse led care alters the traditional boundaries of the General Practitioners-nurse professional relationship.

Recognising metastatic spinal cord compression.

Metastatic spinal cord compression (MSCC) is a potentially life changing oncological emergency. Neurological function and quality of life can be preserved if patients receive an early diagnosis and rapid access to acute interventions to prevent or reduce nerve damage. Symptoms include developing spinal pain, numbness or weakness in arms or legs, or unexplained changes in bladder and bowel function. Community nurses are well placed to pick up on the 'red flag' symptoms of MSCC and ensure patients access prompt, timely investigations to minimise damage.

Measuring safe staff levels in the community: the 'DominiC' workforce management tool.

There is significant need to establish and predict what numbers of district nursing staff are needed to provide quality patient care. This is the first in a series of articles sharing the evidence-based and tested solutions being used in clinical practice across the UK to inform caseload and workforce planning. Stockport NHS Foundation Trust's electronic workload management tool 'DominiC' is explored in this article. The tool promotes continuity of patient care, efficient resource allocation and the benchmarking of care. It predicts future service demands and measures these against the staff resources available. Lessons learned from the process of developing and implementing DominiC are shared to help inform clinicians and managers looking for similar workforce planning solutions.

Administering injectable medications prescribed in the anticipation of the end of life in the community: A mixed-methods observational study.

BACKGROUND: The prescription of injectable anticipatory medications ahead of possible need for last-days-of-life symptom relief is established community practice internationally. Healthcare teams and policy makers view anticipatory medication as having a key role in optimising effective and timely symptom control. However, how these medications are subsequently administered (used) is unclear and warrants detailed investigation to inform interdisciplinary practice and guidance. OBJECTIVE: To identify the frequency, timing and recorded circumstances of the administration of injectable end-of-life anticipatory medications prescribed for patients living at home and in residential care. DESIGN: A retrospective mixed-methods observational study using general practitioner (family doctor) and community nursing held clinical records. SETTING(S): Community-based care in two English counties. PARTICIPANTS: 167 deceased adult patients (aged 18+) registered with eleven general practitioner practices and two associated community nursing services. These were patients prescribed anticipatory medications, identified from the 30 most recent deaths per practice. Patients died between 1 March 2017 and 25 September 2019, from any cause except trauma, sudden death or suicide. METHODS: Patient characteristics, anticipatory medication discussions, recorded administration contexts and decision-making, medication details, recorded symptom control and comfort at death were collected from clinical records. Data analysis combined quantitative and qualitative analyses in a mixed methods approach. RESULTS: Anticipatory medications were administered to 59.9 % (100/167) patients, commenced between 0 and 586 days before death (median 3 days). Their usage was similar for patients who died from cancer and non-cancer conditions. Anticipatory medications were almost universally started and titrated by visiting nurses. Eleven patients had medications started between 59 days and 586 days before death for recorded reversible non-end-of-life care conditions. Only 5 % (5/100) of patient records contained detailed accounts of patient participation in decisions to start medications: four were recorded as being reluctant to commence medications but agreed to trial injections to relieve symptoms. Crucially, there was recurrent under-recording of the effectiveness of injectable medications and patient comfort. CONCLUSIONS: Prescribed medications were commonly administered by visiting community nurses to help manage last-days-of-life symptoms. However, patient records infrequently referred to the effectiveness of administered medication and perceived patient comfort. Most recorded references to patient and family preferences for involvement in anticipatory medication decision-making and their experiences of care were brief and perfunctory. More detailed information should be routinely recorded in clinical records to enable assessment of the appropriate and effective use of anticipatory medicines and how inter-professional collaboration and services could be developed to provide adequate twenty-four-hour cover. TWEETABLE ABSTRACT: Effectiveness of injectable end-of-life symptom control medications and patient comfort often under-recorded @Ben_Bowers__ @PELi_Cam @TheQNI.

Uncertainty in serious illness: A national interdisciplinary consensus exercise to identify clinical research priorities.

BACKGROUND: Serious illness is characterised by uncertainty, particularly in older age groups. Uncertainty may be experienced by patients, family carers, and health professionals about a broad variety of issues. There are many evidence gaps regarding the experience and management of uncertainty. AIM: We aimed to identify priority research areas concerning uncertainty in serious illness, to ensure that future research better meets the needs of those affected by uncertainty and reduce research inefficiencies. METHODS: Rapid prioritisation workshop comprising five focus groups to identify research areas, followed by a ranking exercise to prioritise them. Participants were healthcare professionals caring for those with serious illnesses including geriatrics, palliative care, intensive care; researchers; patient/carer representatives, and policymakers. Descriptive analysis of ranking data and qualitative framework analysis of focus group transcripts was undertaken. RESULTS: Thirty-four participants took part; 67% female, mean age 47 (range 33-67). The highest priority was communication of uncertainty, ranked first by 15 participants (overall ranking score 1.59/3). Subsequent priorities were: 2) How to cope with uncertainty; 3) healthcare professional education/training; 4) Optimising clinical approaches to uncertainty; and 5) exploring in-depth experiences of uncertainty. Research questions regarding optimal management of uncertainty were given higher priority than questions about experiences of uncertainty and its impact. CONCLUSIONS: These co-produced, clinically-focused research priorities map out key evidence gaps concerning uncertainty in serious illness. Managing uncertainty is the most pressing issue, and researchers should prioritise how to optimally manage uncertainty in order to reduce distress, unlock decision paralysis and improve illness and care experience.

Anticipatory prescribing in community end-of-life care: systematic review and narrative synthesis of the evidence since 2017.

BACKGROUND: The anticipatory prescribing of injectable medications is recommended practice in controlling distressing symptoms in the last days of life. A 2017 systematic review found practice and guidance was based on inadequate evidence. Since then, there has been considerable additional research, warranting a new review. AIM: To review 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. DESIGN: Systematic review and narrative synthesis. METHODS: Nine literature databases were searched from May 2017 to March 2022, alongside reference, citation and journal hand-searches. Gough's Weight of Evidence framework was used to appraise included studies. RESULTS: Twenty-eight papers were included in the synthesis. Evidence published since 2017 shows that standardised prescribing of four medications for anticipated symptoms is commonplace in the UK; evidence of practices in other countries is limited. There is limited data on how often medications are administered in the community. Prescriptions are 'accepted' by family caregivers despite inadequate explanations and they generally appreciate having access to medications. Robust evidence of the clinical and cost-effectiveness of anticipatory prescribing remains absent. CONCLUSION: The evidence underpinning anticipatory prescribing practice and policy remains based primarily on healthcare professionals' perceptions that the intervention is reassuring, provides effective, timely symptom relief in the community and prevents crisis hospital admissions. There is still inadequate evidence regarding optimal medications and dose ranges, and the effectiveness of these prescriptions. Patient and family caregiver experiences of anticipatory prescriptions warrant urgent investigation. PROSPERO REGISTRATION: CRD42016052108.