Aims A fundamental right for patients and their families presented with life-limiting condition, is maintaining choice, in terms of place of care and of death, with evidence to suggest that most patients and their families would prefer home.¹ Numerous studies have sought to evaluate patient and family preference for choice of place of care and death as well as factors that may influence this choice.^{2 3} These studies, however mostly focus on offered place and the narrative dialogue that influences choice. No studies have looked how access to medications may impact the choice, or even if factored into discussions.

Despite this lack of data, anticipatory prescribing is deemed a hallmark of effective end of life care for children as well as adults. Anticipatory prescribing is recommended practice by NICE guidance (NG31) as well as CQC standards. International consensus also recommends anticipatory prescribing as best practice, all despite the practice being seemingly underpinned by clinical perception rather than evidence, with anticipatory prescribing providing reassurance, that medicines for symptom management are available at time of need, often be out-of-hours. Medication often prescribed in an anticipatory manner include high risk medications.

Research from adult palliative care suggest that of those medicines anticipatory prescribed. 40 to 54% go unused.⁴ To date there has been no similar assessment in paediatrics or potential medications wastage. We conducted a retrospective chart review to determine whether anticipatory prescribing of medicine was cost effective.

Method A retrospective chart review of patients referred to paediatric palliative care team at Great Ormond Street Hospital was conducted over an 8 month period. Charts were reviewed to identify those who died with a pre-emptive symptom management plan at death. Charts were then assessed to determine what medication was administered at time of death, in the last week of life of life and compared to the medication pre-emptively requested on management plans. A cost analysis was conducted, of medication requested compared to medication used, pricing of medicines was based on NHS indicative price or drug tariff price.

Results 69 patients died in the study period, only 43 died with a management plan. 3 patients were not included in the analysis. Most frequent enteral medicines used were opioids (57.5%), midazolam (37.5%), movicol (17.5%), ketamine/glycopyronium (15%). The most frequent injectable medicines used were opioids (81%), midazolam (59%), levomepromazine (11%).

On average at end of life we identified that the total drugs cost for all drugs requested and dispensed was £33,692.28. The total cost of all drugs used was £7,966.76. The total cost of medication wastage was £25,708.79.

Conclusions Nationally and internationally, that anticipatory prescribing for end of life care in both adults and children, is recognised as best practice. However, this is not based on any level of evidence. Our retrospective chart review suggests that anticipatory prescribing in paediatric palliative is not a cost effective use of medication potentially costing the NHS in excess of £25,000 per year, and an urgent systems review required. This waste represents an environmental cost of 3,875 grams of CO₂e over the 8 month period.

References

1. Hechler T, Blankenburg M, Fredrichsdorf SJ, Garske D, Hubner B, Menke A, Zernikov B. Parents’ perspective on symptoms, quality of life, characteristics of death and end-of-life decisions for children dying from cancer. Klinische Padiatre 2008;220:166–174.

2. Kassam A, Skiadaresis J, Alexander S, Wolfe J. Parent and clinician preferences for location of end-of-life care: home, hospital or freestanding hospice? Paediatric Blood and Cancer 2014;61:859–864.

3. Vickers J, Thompson A, Collins GS, Childs M, Hain R. Place and provision of palliative care for children with progressive cancer: a study by the paediatric oncology Nurses’ Forum/United Kingdon Childrens’ cancer study group palliative care working group. Journal Of Clinical Oncology 2007;25:4472–4476.

4. Bowers B, Howard P, Madden B, Pollock K, Barclay S. Is end of life anticipatory prescribing always enough? British Medical Journal 2023;381:1106.