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User involvement in EoLC: how involved can patients/carers be?
  1. Joanna Black, Project Manager
  1. Joanna Black is User and Carer Involvement Project Manager, The National Council for Palliative Care, London. Email: J.Black{at}


Patient and carer involvement is also known as patient and public involvement and service user or user involvement. It is now a legal requirement and is encouraged in national guidance. Patients and carers, however, cannot fail to be involved in end-of-life care as it is their experience. In view of this, the significance of legislation and guidance stating that patients and carers have a right to be involved in decisions about their care should be examined. For example, what does this legislation mean in practice? How is it relevant to nurses caring for people who are nearing the end of their lives? In relation to end-of-life care, healthcare professions tend to be reluctant to include service users and their carers/families in service planning and delivery. Indeed, there are many barriers to involving patients and carers in end-of-life care. This article aims to demystify the concept of user involvement, examining its place in end-of-life care, exploring practicalities and offering guidance about how to make it a beneficial and effective process. Conflicts of interest: none

  • Carer
  • Palliative and end-of-life care
  • Participation
  • Patient
  • Service user
  • User involvement

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