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Blog: Time to call in the specialists?


With palliative care for COPD patients often inadequate why, asks Janelle Yorke, aren't respiratory nurse specialists more involved?

I was recently disappointed to hear from clinical colleagues that many patients with COPD do not receive adequate palliative care. In many respects this doesn’t come as a huge surprise, and it has certainly been highlighted in the literature.

The reasons for this seem to be multi-factorial. First, it can be difficult to predict prognosis in COPD due to its variable trajectory. This can make the timing appropriateness of end-of-life discussions somewhat hit and miss. In my experience, patients who live with a chronic illness start to gauge that death is approaching and, in most cases, they are desperate for someone to talk to. This requires the knowledge and skill of a health professional who knows the patient and their family – generally the nurse.

So I was again surprised to read that respiratory nurse specialists were rarely involved in the care of a cohort of COPD patients in the last year of life (Elkington et al, 2004). Surely nurse specialists are best placed to provide the link between the patient, GP and practice nurses, chest physician and palliative care team?

Which raises another issue – are palliative care teams involved in end-of-life care for patients with COPD in a way that can best optimise care? When might it be appropriate to introduce palliative care to a patient? Although traditionally linked to cancer, the role of palliative care in non-malignant disease, especially COPD, is being recognised.

By and large, healthcare provision for these patients is reactive and focuses on acute exacerbations. This is concerning, given that evidence suggests a 50% mortality at two years after admission for an acute exacerbation of severe COPD (Connors et al., 1996).

Patients and their families require honest and clear communication about the condition and what to expect in the future. Knowledge of and attitudes towards resuscitation and artificial ventilation need to be explored with patients and their families, preferably before such an event occurs.

To do this effectively, nurses potentially involved in such emotive discussions need to reflect on their own knowledge and attitudes. Lack of confidence in undertaking such discussions with patients was highlighted as a barrier during some recent teaching I was facilitating with practice nurses. It is obvious that guidance is needed in this area - let’s hope that the eagerly awaited NSF for COPD will provide some.


Connors AF Jr et al (1996) Outcomes following acute exacerbation of severe COPD. The SUPPORT investigators. American Journal of respiratory Critical Care Medicine;154: 959-967.

Elkington H et al (2004) The last year of life of COPD: a qualitative study of symptoms and services 2004; 98:439-445.

Click here for details of the Institute for Health and Social Care's professional doctorate course at the University of Salford


Readers' comments (3)

  • I would just like to say that this has been identified as an issue with specialist nurses and that ARNS has tried to address the problem by developing a course in End of Life care in Respiratory Disease that was recently run with the BTS at the University Hospital of South Manchester. It uses end of life respiratory case scenarios for discussion and teaches communication models used in cancer and some developed within the Trust to support patients who have emotional concerns.
    The course evaluated well and requests have already been made to run the course in Belfast.

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  • Yes, this issue is being widely discussed by many specialist groups, including those from respiratory and palliative care specialities. The more this subject is openly discussed the better. ARNS are obviously pivotal to addressing this issue and moving the agenda forward. The End of Life Care in Respiratory Disease course is a great step forward. The challenge that lies ahead is the need to develop an evidence-base to support end of life care in respiratory disease.

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  • Its interesting that the media discussion about money for end of life care announced this week has focused on cancer. I have not heard anyone mention non malignant disease.

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