Abstract
BackgroundWhile the majority of seriously ill people wish to die at home, only half achieve this. The likelihood of someone dying at home often depends on the availability of able and willing lay carers to support them.Dying people are usually unable to take oral medication. When top-up symptom relief medication is required, a clinician travels to the home to administer injectable medication, with attendant delays. The administration of subcutaneous injections by lay carers, though not widespread practice in the UK, has proven key in achieving home deaths in other countries.Our aim is to determine if carer-administration of as-needed subcutaneous medication for four frequent breakthrough symptoms (pain, nausea, restlessness and noisy breathing) in home-based dying patients is feasible and acceptable in the UK.MethodsThis paper describes a randomised pilot trial across three UK sites, with an embedded qualitative study. Dyads of adult patients/carers are eligible, where patients are in the last weeks of life and wish to die at home, and lay carers who are willing to be trained to give subcutaneous medication. Dyads who do not meet strict risk assessment criteria (including known history of substance abuse or carer ability to be trained to competency) will not be approached. Carers in the intervention arm will receive a manualised training package delivered by their local nursing team. Dyads in the control arm will receive usual care. The main outcomes of interest are feasibility, acceptability, recruitment rates, attrition and selection of the most appropriate outcome measures. Interviews with carers and healthcare professionals will explore attitudes to, experiences of and preferences for giving subcutaneous medication and experience of trial processes. The study has obtained full ethical approval.DiscussionThis study will rehearse the procedures and logistics which will be undertaken in a future definitive randomised controlled trial and will inform the design of such a study. Findings will illuminate methodological and ethical issues pertaining to researching last days of life care.The study is funded by the National Institute for Health Research (Health Technology Assessment [HTA] project 15/10/37).Trial registrationISRCTN, ISRCTN 11211024. Registered on 27 September 2016.
Highlights
While the majority of seriously ill people wish to die at home, only half achieve this
Significant Event reporting will include the following: the appropriateness of administration; proportionality; side effects both anticipated and not anticipated; drug accountability; and carer events
The study we describe will fulfil this aim and will provide an exemplar for conducting randomised controlled trial (RCT) in the last days of life by contributing to the emerging methodological development of palliative care research
Summary
While the majority of seriously ill people wish to die at home, only half achieve this. The administration of subcutaneous injections by lay carers, though not widespread practice in the UK, has proven key in achieving home deaths in other countries. Our aim is to determine if carer-administration of as-needed subcutaneous medication for four frequent breakthrough symptoms (pain, nausea, restlessness and noisy breathing) in home-based dying patients is feasible and acceptable in the UK. The likelihood of patients remaining at home often depends on availability of able and willing informal carers [2,3,4]. These carers take on numerous care tasks, often including the responsibility of assisting patients to have their oral as-needed medications. As dying patients are commonly unable to take oral medication, as-needed medication is most often given as a SC injection by a healthcare professional (HCP) [8], usually a district nurse (DN) in the UK
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