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  • Marlise Poolman
  • Jessica Roberts
  • Anthony Byrne
    Cardiff and Vale University Local Health Board
  • Paul Perkins
    Gloucestershire Hospitals NHS Foundation Trust
  • Zoe Hoare
  • Annmarie Nelson
    Cardiff University
  • Julia Hiscock
  • Dyfrig Hughes
  • Betty Foster
    North Wales Cancer Network Patient Forum
  • Julie O'Connor
    Leckhampton Court Hospice
  • Liz Reymond
    Queensland Health Metro South Hospital Health Service
  • Sue Healy
    Queensland Health Metro South Hospital Health Service
  • Rossela Roberts
    Betsi Cadwaladr University Health Board
  • Bee Wee
    University of Oxford
  • Penney Lewis
    King's College London
  • Rosalynde Johnstone
    Betsi Cadwaladr University Health Board
  • Sian Roberts
    Betsi Cadwaladr University Health Board
  • Emily Holmes
  • Stella Wright
    School of Healthcare Sciences, Bangor University
  • Annie Hendry
  • Clare Wilkinson

BACKGROUND: While 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.

METHODS: This 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.

DISCUSSION: This 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 REGISTRATION: ISRCTN, ISRCTN 11211024 . Registered on 27 September 2016.


  • Analgesics/administration & dosage, Antiemetics/administration & dosage, Attitude to Death, Caregivers/education, Delivery of Health Care/methods, Education, Nonprofessional/methods, Feasibility Studies, Health Knowledge, Attitudes, Practice, Home Care Services, Humans, Hypnotics and Sedatives/administration & dosage, Injections, Subcutaneous, Multicenter Studies as Topic, Palliative Care/methods, Pilot Projects, Randomized Controlled Trials as Topic, Terminal Care/methods, Time Factors, Treatment Outcome, United Kingdom
Original languageEnglish
Article number105
Number of pages16
Issue number1
Publication statusPublished - 7 Feb 2019

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