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

J Cyst Fibros. 2005 Dec;4(4):249-57. doi: 10.1016/j.jcf.2005.07.001. Epub 2005 Oct 17.


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.

MeSH terms

  • Adult
  • Attitude of Health Personnel*
  • Attitude to Death*
  • Cystic Fibrosis / psychology*
  • Family / psychology*
  • Female
  • Humans
  • Interviews as Topic
  • Male
  • Terminal Care / psychology
  • Terminal Care / standards*
  • United Kingdom