Provision of good quality end of life care has become a healthcare priority over the last decade. Medical advances and demographic trends mean that the proportion of people living with serious chronic conditions into old age is increasing rapidly. In the USA in 1997, the Institute of Medicine report ‘Approaching Death: Improving Care at the End of Life’ concluded that “the timing appears right to press for a vigorous societal commitment to improve care at the end of life” (Field and Cassel 1997
End of life care aims to optimise the quality of life of patients with advanced, incurable disease (). Its principles are the same as those of palliative care, which developed in the UK in the 1960s in response to the needs of terminally ill cancer patients. With increasing recognition that those with incurable non-malignant disease also have extensive palliative care needs, specialist palliative care services are attempting to provide needs-based rather than diagnosis-based care (Addington-Hall 1998
). In practice, limited resources mean that only those with the most complex needs receive specialist palliative care input. In the UK, approximately 20% of those that die have contact with specialist palliative care services, of which over 90% have malignant disease (NCPC 2006
Care for those approaching the end of life therefore cannot be, and indeed should not be, simply the domain of palliative care specialists. All healthcare professionals should be able to provide good quality generalist palliative care for their patients (NHS Executive 1996
). The relative neglect of end of life care until recently may be due, in part, to death being viewed as a failure in medical care, rather than inevitable (Middlewood et al 2001
). It is a duty and privilege to be able to provide compassionate and effective care from diagnosis to death.
The challenge for providers of generalist palliative care is particularly great when caring for those with advanced chronic obstructive pulmonary disease (COPD). COPD is the fourth leading cause of mortality worldwide, and compared to chronic cardiovascular and cerebrovascular disease, mortality from COPD continues to rise (NIH 2003
; WHO 2003
). Its sufferers have extensive end of life needs. Death tends to occur after a prolonged functional decline associated with a heavy symptom load, emotional distress and social isolation. The quality of life of COPD patients appears to be at least as poor, and indeed may be worse than that of patients with lung cancer (Gore et al 2000
; Edmonds et al 2001
). There is a growing body of evidence that existing service provision is unable to meet these needs (Heffner et al 1996
; Claessens et al 2000
; Jones et al 2004
; Elkington et al 2005
; Au et al 2006
). The emphasis appears to be on reactive crisis intervention at the time of acute exacerbations, rather than continual supportive care (Skilbeck et al 1998
The aim of this review is to provide readers with an appraisal of recent developments in end of life care for COPD patients. An evidence-based approach will be given to overcoming many of the barriers that currently hinder the practice of good quality EOL care. This review is aimed at respiratory specialists, who have a key role in improving the quality of generalist palliative care received by patients with COPD.
The review is based on a detailed search of work published since 1980 in the databases Medline and Embase using Medical Subject Heading (MeSH) terms that included Pulmonary disease chronic obstructive, Palliative care, Needs assessment, Anxiety, Depression, Pain, Fatigue, Communication, Advance directives, Terminal Care, and the textwords Dyspnoea and Breathlessness. The search was extended by hand-searching recent journals and reference lists, and using internet search engines to help identify other pertinent literature.