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Barriers to advance care planning in chronic obstructive pulmonary disease

University of Sheffield, Sheffield Institute for Studies on Ageing, Sheffield, M.Gott{at}sheffield.ac.uk

C. Gardiner

University of Sheffield, Sheffield Institute for Studies on Ageing, Sheffield

N. Small

University of Bradford, School of Health Studies, Bradford

S. Payne

University of Lancaster, Institute for Health Research, Lancaster

D. Seamark

Peninsula Medical School, Primary Care, Plymouth

S. Barnes

Section of Public Health, School of Health and Related Research, University of Sheffield, Sheffield

D. Halpin

Royal Devon and Exeter Hospital, Exeter and C Ruse Sheffield Teaching Hospitals Trust, Sheffield

C. Ruse

Sheffield Teaching Hospitals Trust, Sheffield

The English End of Life Care Strategy promises that all patients with advanced, life limiting illness will have the opportunity to participate in Advance Care Planning (ACP). For patients with Chronic Obstructive Pulmonary Disease (COPD), the barriers to this being achieved in practice are under-explored. Five focus groups were held with a total of 39 health care professionals involved in the care of patients with COPD. Participants reported that discussions relating to ACP are very rarely initiated with patients with COPD and identified the following barriers: inadequate information provision about the likely course of COPD at diagnosis; lack of consensus regarding who should initiate ACP and in which setting; connotations of comparing COPD with cancer; ACP discussions conflicting with goals of chronic disease management; and a lack of understanding of the meaning of ‘end of life’ within the context of COPD. The findings from this study indicate that, for patients with COPD, significant service improvement is needed before the objective of the End of Life Care Strategy regarding patient participation in end of life decision-making is to be achieved. Whilst the findings support the Strategy’s recommendations regarding an urgent for both professional education and increased public education about end of life issues, they also indicate that these alone will not be enough to effect the level of change required. Consideration also needs to be given to the integration of chronic disease management and end of life care and to developing definitions of end of life care that fit with concepts of ‘continuous palliation’.

Key Words: advance care planning • COPD • older people • palliative care

This version was published on October 1, 2009

Palliative Medicine, Vol. 23, No. 7, 642-648 (2009)
DOI: 10.1177/0269216309106790


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