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 literature3–5 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 * 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. Article  Google Scholar  * 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. Article 

Google Scholar  * 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. Article  Google Scholar  * 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. CAS  PubMed  PubMed Central  Google Scholar  * 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). Article  Google Scholar  Download references AUTHOR INFORMATION AUTHORS AND AFFILIATIONS * Primary Palliative Care Research Group, Centre for Population

Health Sciences, University of Edinburgh, Edinburgh, UK Marilyn Kendall & Susan Buckingham * Royal Infirmary of Edinburgh, Edinburgh, UK Susie Ferguson * NHS Lothian Managed Clinical

Network, Edinburgh, UK Ninian Hewitt * Allergy and Respiratory Research Group, Centre for Population Health Sciences, University of Edinburgh, Edinburgh, UK Hilary Pinnock Authors * Marilyn

Kendall View author publications You can also search for this author inPubMed Google Scholar * Susan Buckingham View author publications You can also search for this author inPubMed Google

Scholar * Susie Ferguson View author publications You can also search for this author inPubMed Google Scholar * Ninian Hewitt View author publications You can also search for this author

inPubMed Google Scholar * Hilary Pinnock View author publications You can also search for this author inPubMed Google Scholar CORRESPONDING AUTHOR Correspondence to Hilary Pinnock. ETHICS

DECLARATIONS COMPETING INTERESTS 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. RIGHTS AND PERMISSIONS This work is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International

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http://creativecommons.org/licenses/by-nc-sa/4.0/ Reprints and permissions ABOUT THIS ARTICLE CITE THIS ARTICLE 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 Download citation * Published: 31 July 2014 * DOI:

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