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Research and Projects

End of Life Advance Care Planning Study (ELAPS)

Who is involved?

Theme: CLAHRC - Person-Centred Care
Status: Complete

Background

The importance of good communication in clinician-patient interactions is well recognised. In end of life care advance care planning, including discussions about resuscitation, are central to the provision of high quality care. Despite this, there has been limited research on best practice in communication in end of life care, particularly in relation to discussions about advance care planning. This aim of this study was to provide an account of clinicians’ experiences of, and attitudes to, holding conversations with patients about their end of life care.

The National Institute for Health Research (NIHR) recently released a report highlighting a need for qualitative approaches to research in End of Life care and this study will address this (Goodman et al, 2012).

Project aims

The primary aim of this research was to understand clinicians’ accounts of the barriers and facilitators to initiating conversations about advanced care planning at the end of life with patients. The secondary aim was to prepare a bid for NIHR RfPB funding to carry out a larger study involving patients and their families as well as clinicians.

Specific objectives:

  • Finalise the protocol, submit and obtain ethical approval and research management and guidance approval
  • Recruit participants, finalise research interview schedule
  • Conduct initial interviews, transcribe and analyse data
  • Write up, disseminate to clinicians and submit article to peer-reviewed journal publication and submit abstracts to conferences.

This project was funded by the Small Research Grants Scheme at the Royal Devon and Exeter Hospital Foundation Trust.

Project activity

In the course of the project fifteen interviews with senior clinicians were carried out to elicit narratives about their experiences of discussing advance care planning with patients nearing the end of life. Barriers and facilitators were identified in relation to initiating and holding conversations about end of life care; main issues raised concerned timing of conversations; location of conversations (finding a “safe place”); developing a trusting relationship with patients and their families; and the importance of correctly assessing disease trajectories.

A ground theory approach was used to interpret the interview data. Grounded theory is particularly suited to this study since it was first developed and refined in the 1960s in a series of seminal studies of dying, death and bereavement (Glaser and Strauss 1965, 1968, Sudnow, 1967; Strauss and Glaser, 1970).

Initial interviews covered the following topics:

  • Initial information about current employment, role, responsibilities
  • Clinician involvement with dying patients
  • Clinician attitudes to advance care planning at the end of life
  • Awareness of local and national guidelines on end of life care
  • Perspectives on local guidelines
  • Experience of initiating end of life conversations with a focus on eliciting narratives of events before, during, and after such conversations.

Project outputs

Members of the team gave presentations at the UK Palliative Care Congress (March 2014) and British Medical Sociology Annual Conference (Sept 2014).

We aim to utilise this work for the foundation for an application to the National Institute of Health Research (NIHR) Research for Patient Benefit (RfPB). This research is both valuable and timely in answering the call for grants in end of life care.

Others Involved

Dr Kerry Jones, Dr Rebecca Baines - Consultant in Palliative Care - Hospiscare