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Making sense of continuous sedation in end-of-life care for cancer patients: an interview study with bereaved relatives in three European countries

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Abstract

Purpose

The purpose of the study was to explore relatives’ descriptions and experiences of continuous sedation in end-of-life care for cancer patients and to identify and explain differences between respondents from the Netherlands, Belgium, and the UK.

Methods

In-depth interviews were held between January 2011 and May 2012 with 38 relatives of 32 cancer patients who received continuous sedation until death in hospitals, the community, and hospices/palliative care units.

Results

Relatives’ descriptions of the practice referred to the outcome, to practical aspects, and to the goals of sedation. While most relatives believed sedation had contributed to a ‘good death’ for the patient, yet many expressed concerns. These related to anxieties about the patient’s wellbeing, their own wellbeing, and questions about whether continuous sedation had shortened the patient’s life (mostly UK), or whether an alternative approach would have been better. Such concerns seemed to have been prompted by relatives witnessing unexpected events such as the patient coming to awareness during sedation. In the Netherlands and in Belgium, several relatives reported that the start of the sedation allowed for a planned moment of ‘saying goodbye’. In contrast, UK relatives discerned neither an explicit point at which sedation was started nor a specific moment of farewell.

Conclusions

Relatives believed that sedation contributed to the patient having a good death. Nevertheless, they also expressed concerns that may have been provoked by unexpected events for which they were unprepared. There seems to exist differences in the process of saying goodbye between the NL/BE and the UK.

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Acknowledgments

We thank the relatives who gave their time to be interviewed in the study.

Ethical approval

The study was approved in the UK by the Leicestershire, Northampton and Rutland Research Ethics Committee 1, reference number 10/H0406/57; in Belgium by the Ghent University Hospital Ethics Committee, reference number B670201010174; and in the Netherlands by the Erasmus MC Medical Ethical Research Committee, reference number NL33327.078.10, V03. Each participant gave written informed consent before taking part.

Conflict of interest

No competing financial interests exist. The authors have full control over all primary data. The authors agree to allow the journal to review their data if requested.

Contributors

The research on which this paper is based is linked to a larger project, the ‘UNBIASED’ study (UK-Netherlands-Belgium InternAtional SEDation study), which is a collaboration between research teams in the UK, Belgium, and the Netherlands. All authors and members of the UNBIASED consortium were involved in the study concept, design, and interpretation of data.

The UNBIASED consortium

The following are members of the UNBIASED study (UK-Netherlands-Belgium International SEDation study): Julia Addington-Hall (University of Southampton, Southampton, UK); Livia Anquinet (Vrije Universiteit Brussel, Brussels, Belgium); Jayne Brown (De Montfort University, Leicester, UK); Sophie Bruinsma (Erasmus MC, Rotterdam, Netherlands); Luc Deliens (Vrije Universiteit Brussel, Brussels, Belgium and VU University Medical Centre, Amsterdam, the Netherlands); Nigel Mathers (University of Sheffield, Sheffield, UK); Freddy Mortier (Ghent University, Ghent, Belgium); Sheila Payne (Lancaster University, Lancaster, UK); Kasper Raus (Ghent University, Ghent, Belgium); Judith Rietjens (Erasmus MC, Rotterdam, Netherlands and Vrije Universiteit Brussel, Brussels, Belgium); Clive Seale (Brunel University, Uxbridge, UK); Jane Seymour (University of Nottingham, Nottingham; UK); W. Henry Smithson (University of Sheffield, Sheffield; UK); Sigrid Sterckx (Ghent University, Ghent, Belgium); Rien Janssens (VU University Medical Centre, Amsterdam, Netherlands); and Agnes van der Heide (Erasmus MC, Rotterdam, Netherlands).

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Authors and Affiliations

  1. Department of Public Health, Erasmus MC, University Medical Center Rotterdam, P.O. Box 2040, 3000 CA, Rotterdam, The Netherlands

    S. M. Bruinsma, A. van der Heide & J. A. C. Rietjens

  2. School of Nursing and Midwifery, De Montfort University, Edith Murphy House, the Gateway, Leicester, UK

    J. Brown

  3. End-of-Life Care Research Group, Vrije Universiteit Brussel & Ghent University, Brussels, Belgium

    L. Deliens, L. Anquinet & J. A. C. Rietjens

  4. International Observatory on End of Life Care, Faculty of Health and Medicine, Lancaster University, Lancaster, UK

    S. A. Payne

  5. Sue Ryder Care Centre for the Study of Supportive, Palliative and End of Life Care, School of Nursing, Midwifery and Physiotherapy, University of Nottingham, Nottingham, UK

    J. E. Seymour

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  1. S. M. Bruinsma
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  2. J. Brown
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  3. A. van der Heide
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  4. L. Deliens
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  5. L. Anquinet
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  6. S. A. Payne
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  7. J. E. Seymour
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  8. J. A. C. Rietjens
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on behalf of UNBIASED

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Correspondence to S. M. Bruinsma.

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Bruinsma, S.M., Brown, J., van der Heide, A. et al. Making sense of continuous sedation in end-of-life care for cancer patients: an interview study with bereaved relatives in three European countries. Support Care Cancer 22, 3243–3252 (2014). https://doi.org/10.1007/s00520-014-2344-7

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  • DOI: https://doi.org/10.1007/s00520-014-2344-7

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