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We need to stop looking for something that is not there….

Dear Sirs,

We have read with interest the paper by Epiphaniou et al.,1 which highlights the challenge of providing care for people with very severe chronic obstructive pulmonary disease (COPD) as they approach the end of their life, and agree with the response from Crawford et al.2 when they highlight that a key problem is ‘defining a transition point for the initiation of end-of-life care services’.

However, we disagree with their conclusion that the solution is to try and identify yet more prognostic indicators in an attempt to identify a transition point. Our qualitative data3 found that identifying a time point for transition to palliative care had little resonance for people with COPD or their clinicians as they lived with their lifelong condition with its imperceptibly slow but inexorable decline. Our conclusion is echoed in a recent systematic synthesis of the experiences of living and dying with COPD,4 which conceives the trajectory of COPD as a ‘roller coaster’, with ‘no one specific event demarcating the ‘end-of-life’ stage, except perhaps the final acute exacerbation, which is difficult to predict and may be relatively brief’.

Starting from the perspective of services designed for cancer, and looking in ever more detail for a transition point that is not there, is unlikely to be the solution. Maybe we need to take a step back, listen to the messages from the extensive qualitative literature35 and ask ourselves ‘if we started with a blank sheet of paper, how would supportive care for people with COPD look?’

We might then concentrate on developing services that integrate supportive care into the routine care of people living (perhaps for many years) with severe COPD.

References

  1. 1

    Epiphaniou E, Shipman C, Harding R, Mason B, Murray SA, Higginson IJ et al. Coordination of end-of-life care for patients with lung cancer and those with advanced COPD: are there transferable lessons? A longitudinal qualitative study. Prim Care Respir J 2014; 23: 46–51.

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    Crawford E-J, Moudgil H, Srinivasan K, Naicker T, Ahmad N . Coordination of end-of-life care for patients with lung cancer and those with advanced COPD: a letter of response. NPJ Prim Care Respir Med 2014; 24: 14030.

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    Pinnock H, Kendall M, Murray SA, Worth A, Levack P, Porter M et al. Living and dying with severe chronic obstructive pulmonary disease: multi-perspective longitudinal qualitative study. BMJ 2011; 342: d142.

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    Giacomini M, DeJean D, Simeonov D, Smith A . Experiences of living and dying with COPD: a systematic review and synthesis of the qualitative empirical literature. Ont Health Technol Assess Ser 2012; 12: 1–47.

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    Disler RT, Green A, Luckett T, Newton PJ, Currow D, Davidson PM . Experience of advanced chronic obstructive pulmonary disease: metasynthesis of qualitative research. J Pain Symptom Manage 2014; (e-pub ahead of print 26 April 2014; DOI: 10.1016/j.jpainsymman.2014.03.009).

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Correspondence to Hilary Pinnock.

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HP is an Associate editor of npj Primary Care Respiratory Medicine, but was not involved in the editorial review of, nor the decision to publish, this article. The remaining authors declare no conflict of interest.

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Kendall, M., Buckingham, S., Ferguson, S. et al. We need to stop looking for something that is not there….. npj Prim Care Resp Med 24, 14031 (2014). https://doi.org/10.1038/npjpcrm.2014.31

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