Buckingham, Susan

Ferguson, Susie

Hewitt, Ninian

Kendall, Marilyn

Pinnock, Hilary

npj Primary Care Respiratory Medicine

PubMed

Edinburgh Research Explorer

     Edinburgh Research Explorer                                      We need to stop looking for something that is not there…Citation for published version:Kendall, M, Buckingham, S, Ferguson, S, Hewitt, N & Pinnock, H 2014, 'We need to stop looking forsomething that is not there…' npj Primary Care Respiratory Medicine, vol. 24, pp. 14031. DOI:10.1038/npjpcrm.2014.31Digital Object Identifier (DOI):10.1038/npjpcrm.2014.31Link:Link to publication record in Edinburgh Research ExplorerDocument Version:Publisher's PDF, also known as Version of recordPublished In:npj Primary Care Respiratory MedicinePublisher Rights Statement:This work is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 4.0 InternationalLicense. The images or other third party material in this article are included in the article’s Creative Commonslicense, unless indicated otherwise in the credit line; if the material is not included under the Creative Commonslicense, users will need to obtain permission from the license holder to reproduce the material. To view a copy ofthis license, visit http://creativecommons.org/licenses/by-nc-sa/4.0/General rightsCopyright for the publications made accessible via the Edinburgh Research Explorer is retained by the author(s)and / or other copyright owners and it is a condition of accessing these publications that users recognise andabide by the legal requirements associated with these rights.Take down policyThe University of Edinburgh has made every reasonable effort to ensure that Edinburgh Research Explorercontent complies with UK legislation. If you believe that the public display of this file breaches copyright pleasecontact openaccess@ed.ac.uk providing details, and we will remove access to the work immediately andinvestigate your claim.Download date: 05. Apr. 2019CORRESPONDENCE OPENWe need to stop looking for something that is not there….npj Primary Care Respiratory Medicine (2014) 24, 14031;doi:10.1038/npjpcrm.2014.31; published online 31 July 2014Dear Sirs,We have read with interest the paper by Epiphaniou et al.,1which highlights the challenge of providing care for people withvery severe chronic obstructive pulmonary disease (COPD) as theyapproach the end of their life, and agree with the response fromCrawford et al.2 when they highlight that a key problem is ‘deﬁninga transition point for the initiation of end-of-life care services’.However, we disagree with their conclusion that the solution isto try and identify yet more prognostic indicators in an attempt toidentify a transition point. Our qualitative data3 found thatidentifying a time point for transition to palliative care had littleresonance for people with COPD or their clinicians as they livedwith their lifelong condition with its imperceptibly slow butinexorable decline. Our conclusion is echoed in a recentsystematic synthesis of the experiences of living and dying withCOPD,4 which conceives the trajectory of COPD as a ‘rollercoaster’, with ‘no one speciﬁc event demarcating the ‘end-of-life’stage, except perhaps the ﬁnal acute exacerbation, which isdifﬁcult 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 notthere, is unlikely to be the solution. Maybe we need to take a stepback, listen to the messages from the extensive qualitativeliterature3–5 and ask ourselves ‘if we started with a blank sheet ofpaper, how would supportive care for people with COPD look?’We might then concentrate on developing services thatintegrate supportive care into the routine care of people living(perhaps for many years) with severe COPD.COMPETING INTERESTSHP is an Associate editor of npj Primary Care Respiratory Medicine, but was notinvolved in the editorial review of, nor the decision to publish, this article. Theremaining authors declare no conﬂict of interest.Marilyn Kendall1, Susan Buckingham1,Susie Ferguson2, Ninian Hewitt3 andHilary Pinnock41Primary Palliative Care Research Group,Centre for Population Health Sciences,University of Edinburgh, Edinburgh, UK;2Royal Inﬁrmary of Edinburgh, Edinburgh, UK;3NHS Lothian Managed Clinical Network, Edinburgh, UK and4Allergy and Respiratory Research Group, Centre forPopulation Health Sciences, University of Edinburgh,Edinburgh, UKCorrespondence: H Pinnock (hilary.pinnock@ed.ac.uk)REFERENCES1 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 withadvanced COPD: are there transferable lessons? A longitudinal qualitative study.Prim Care Respir J 2014; 23: 46–51.2 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 ofresponse. NPJ Prim Care Respir Med 2014; 24: 14030.3 Pinnock H, Kendall M, Murray SA, Worth A, Levack P, Porter M et al. Living anddying with severe chronic obstructive pulmonary disease: multi-perspectivelongitudinal qualitative study. BMJ 2011; 342: d142.4 Giacomini M, DeJean D, Simeonov D, Smith A. Experiences of living and dying withCOPD: a systematic review and synthesis of the qualitative empirical literature. OntHealth Technol Assess Ser 2012; 12: 1–47.5 Disler RT, Green A, Luckett T, Newton PJ, Currow D, Davidson PM. Experience ofadvanced chronic obstructive pulmonary disease: metasynthesis of qualitativeresearch. J Pain Symptom Manage 2014; (e-pub ahead of print 26 April 2014; DOI:10.1016/j.jpainsymman.2014.03.009).This work is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License. The images orother third party material in this article are included in the article’s Creative Commonslicense, unless indicatedotherwise in the credit line; if thematerial is not included underthe Creative Commons license, users will need to obtain permission from the licenseholder to reproduce the material. To view a copy of this license, visit http://creativecommons.org/licenses/by-nc-sa/4.0/www.nature.com/npjpcrmAll rights reserved 2055-1010/14© 2014 Primary Care Respiratory Society UK/Macmillan Publishers Limited

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

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