Elsevier

Journal of Cystic Fibrosis

Volume 4, Issue 4, December 2005, Pages 249-257
Journal of Cystic Fibrosis

End of life care for adult cystic fibrosis patients: Facilitating a good enough death

https://doi.org/10.1016/j.jcf.2005.07.001Get rights and content
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Abstract

Background

There is little empirical research on end of life care for CF patients from qualitative, psychosocial perspectives or which examines how staff members manage specific issues raised by cystic fibrosis deaths. This study examined how a number of recent deaths have been handled in an adult CF centre in the UK.

Methods

Multi-perspective psychosocial interview study with patients, staff, and relatives of decedents. Team meetings were observed. Interviews were analysed using a qualitative methodology (Interpretative Phenomenological Analysis). Observational analyses were used to assess the team's interactions when dealing with end of life issues with patients.

Results

Analysis of interviews uncovered themes which addressed the team's questions on care and support of patients with end-stage CF as follows: talking about death and dying; the multidisciplinary team; difficulties for the staff and saying goodbye; active versus palliative care. As a result of psychological input with the multidisciplinary team, staff felt supported and developed the ability to talk openly and in good time to patients regarding their deaths and their wishes for treatment at the end of life.

Conclusion

The team felt that they had reached a foundation upon which to propose a model of care at the end of life for adult cystic fibrosis patients.

Keywords

Palliative care
Psychosocial
Honest communications
Early discussions

Cited by (0)

Adult Cystic Fibrosis Centre, Papworth NHS Trust. Work should be attributed to Adult Cystic Fibrosis Centre, Papworth NHS Trust. Source of support: (Cystic Fibrosis Trust and Papworth Hospital Trust Funds). The funding sources had no involvement in the study design, collection, analysis, and interpretation of the data. All authors declare that there are no competing interests. Ethics approval for the study was obtained from Huntingdon Local Research Ethics Committee. Abstracted (490) At Seventeenth Annual North American Cystic Fibrosis Conference, October 2003, Anaheim. “Palliative Care in Cystic Fibrosis: A Model of Good Practice” Pediatric Pulmonology Supplement 25, 2003.