The challenge to health professionals when carers resist truth telling at the end of life: a qualitative secondary analysis

Authors

  • Helen Noble PhD, RN, PG Dip Ac Prac,

    Lecturer Health Services Research, Corresponding author
    1. School of Nursing and Midwifery, Queen's University Belfast, Belfast, UK
    • Correspondence: Helen Noble, Lecturer Health Services Research, School of Nursing and Midwifery, Queen's University Belfast, MBC, Lisburn Road, Belfast, UK. Telephone: +44 0044 289097 2472.

      E-mail: helen.noble@qub.ac.uk

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  • Jayne E Price PhD, RN, PG Dip Ed,

    Associate Professor
    1. Children's Nursing, School of Nursing Faculty of Health, Social Care and Education Kingston University and St George's, University London, London, Belfast, UK
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  • Sam Porter PhD, RN

    Chair in Nursing Research
    1. School of Nursing and Midwifery, Queen's University Belfast, Belfast, UK
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Abstract

Aims and objectives

To draw out the similar complexities faced by staff around truth-telling in a children's and adult population and to interrogate the dilemmas faced by staff when informal carers act to block truth-telling.

Background

Policy encourages normalisation of death, but carers may act to protect or prevent the patient from being told the truth. Little is known about the impact on staff.

Design

Secondary analysis of data using a supra-analysis design to identify commonality of experiences.

Methods

Secondary ‘supra-analysis’ was used to transcend the focus of two primary studies in the UK, which examined staff perspectives in a palliative children's and a palliative adult setting, respectively. The analysis examined new theoretical questions relating to the commonality of issues independently derived in each primary study. Both primary studies used focus groups. Existing empirical data were analysed thematically and compared across the studies.

Results

Staff reported a hiding of the truth by carers and sustained use of activities aimed at prolonging life. Carers frequently ignored the advance of end of life, and divergence between staff and carer approaches to truth-telling challenged professionals. Not being truthful with patients had a deleterious effect on staff, causing anger and feelings of incompetence.

Conclusions

Both children's and adult specialist palliative care staff found themselves caught in a dilemma, subject to policies that promoted openness in planning for death and informal carers who often prevented them from being truthful with patients about terminal prognosis. This dilemma had adverse psychological effects upon many staff.

Relevance to clinical practice

There remains a powerful death-denying culture in many societies, and carers of dying patients may prevent staff from being truthful with their patients. The current situation is not ideal, and open discussion of this problem is the essential first step in finding a solution.

Ancillary