• chronic obstructive pulmonary disease

In the UK 17 500 men and 14 500 women die every year from chronic obstructive pulmonary disease (COPD). Work reported in this issue of Thorax suggests that these figures are likely to be falsely low.¹ The published death rate compares with 13 000 women dying of breast cancer and 9500 men dying of prostate cancer every year. Both of the latter two diseases now attract much publicity, considerable research expenditure and, for breast cancer at least, a very expensive health service screening programme, the value of which is continually debated. Globally, COPD is the fourth or fifth leading cause of death and both morbidity and mortality are predicted to rise. The World Health Organisation (WHO) is one of the few organisations to have recognised the impending burden of this disease to both the individual and to society, publishing both a consultation document on the development of a comprehensive approach for the prevention and control of respiratory disease² and also an implementation strategy.³ At a national level few countries have health initiatives to help those with COPD, and perhaps the respiratory fraternity should take some responsibility for what could be regarded as the neglect of this group of patients—neglect not necessarily at the level of personal care, but neglect in terms of failure to ensure that governments and health departments resource the necessary care, and resource research into better management.

In what areas might we have failed these patients? “I started when it was fashionable doctor, and try as I might I have only now been able to give up when it’s probably too late”. This is a statement by a smoker which we all hear too often. Fifty years after Sir Richard Doll made clear the association between smoking and disease⁴ and 25 years after the late Charles Fletcher showed clearly the inexorable decline of airway function in susceptible smokers,⁵ we are only in 2003 beginning to take appropriate action to curb tobacco promotion—9 years after the UK Government’s Chief Economist declared that banning tobacco advertising would be likely to save 3000 lives per annum and £40 million unnecessary NHS expenditure.

Recent work underlines the importance of action in this field by showing that a much higher proportion of smokers than was previously thought will develop COPD.⁶ However, the effect of European control and a decline in US smoking habits has merely led a deceitful and manipulative industry to peddle its noxious wares in low income countries ill equipped to cope with today’s health burdens, without tomorrow’s addition of COPD and lung cancer. In this field the WHO have been less successful and, despite valiant attempts, global tobacco control has reverted to becoming a dream because of the supremacy of vested interests.

Perhaps we can at least diagnose COPD early in its natural history and target smoking cessation advice at those yet to develop severe disease? In practice we again fail, and most patients present with severe symptomatic disease because of, among other factors, a lack of use of spirometry in primary care. Van Schayck and colleagues⁷ have shown how a trained practice assistant can target smokers in primary care and, especially by looking at those who are older with a cough, enable us to detect those with significant airway narrowing who may not have been diagnosed by their GP. These can then be exhorted to cease smoking with the expectation that their subsequent rate of decline will at least parallel that of a non-smoker. Even here there is evidence that we encourage smoking cessation but rarely give sufficient advice about how this may be achieved.⁸

What of those who miss our feeble attempts at screening? The majority present with established airway narrowing and with symptoms and limitation of activities. Apart from smoking cessation, we have no conclusive evidence that any therapeutic intervention reverses progressive decline in airway function. Inhaled bronchodilators have an essential role in relieving symptoms, and β agonists, anticholinergic agents, and theophylline have all been shown to have some beneficial effect on exercise capacity and together may have a greater effect on airway function.⁹ Long acting inhaled β agonists and once daily anticholinergic agents^10,11 may improve health status but the exact role of these agents and evaluation of their cost effectiveness may require more comparative studies. In some studies it is possible that we have used the wrong end points and quality of life and health status may be more important than lung function. In other studies beneficial effects for a few may have been overlooked in the analysis of group mean data. The role of inhaled steroids is becoming clearer. While a significant beneficial effect upon the rate of decline in airway calibre is unlikely, there is evidence that the rate of exacerbations may be reduced by their use.¹² There may even be an effect on mortality, possibly using higher doses than are often used.^13,14 More recently, study of the use of budesonide/formoterol¹⁵ and fluticasone/salmeterol¹⁶ combinations in COPD have been shown to have some benefit on exacerbation rates and lung function.

This plethora of studies of the role of various pharmacological agents in COPD should not lull us into a sense of complacency. Most of these interventions achieve benefit of limited magnitude and the costs of the newer agents are always greater than their predecessors. We probably fail our patients by not calling more loudly for newer molecules to modify other aspects of the disease. Why should we expect anti-asthma therapies to be particularly useful for COPD? The focus for new medications should lie with control of the specific types of inflammation present in COPD and interventions that could aid in the reparation of damaged lung tissue would be ideal. We also need better antiviral remedies for viruses play a major part in the initiation of exacerbations of COPD.^17,18 The impact of exacerbations can be considerable and exacerbations are bad for you—35 days after an exacerbation only 75% of patients had regained their original peak flow in one study and 7.1% had not returned to baseline at 3 months¹⁹; 30% of the elderly had still not regained mobility 3 months after discharge from hospital following an exacerbation and two thirds were unable to do housework they could previously do.²⁰

We therefore need to think of new ways of helping to prevent exacerbations or to treat them promptly. Self-management education for those with COPD has not been shown to alter outcomes. This does not reflect a lack of willingness of those with COPD to take control of their own disease; rather, it is likely to reflect a lack of efficacy of the interventions used and, in most of the studies, self-management for COPD has merely involved the use of an asthma self-management plan. What may be needed in COPD is a recognition that most exacerbations are associated with viral infections and, in addition to needing newer antiviral agents, we need more prompt use of antibiotics for secondary bacterial colonisation.^21,22

“We need to augment the voice [of patients with COPD] and campaign against nihilism”

When admitted to hospital with exacerbations we also fail these patients by the limited availability of non-invasive positive pressure ventilation (NIPPV). Despite overwhelming evidence of the benefit of this intervention,²³ far fewer than the 16% of hospitalised exacerbations of COPD who are thought to need NIPPV actually receive it.^24,25 We also fail to realise that the timing of many exacerbations of COPD is predictable. The King’s Fund in London has mapped very clearly both where demand for health service resources is likely to occur geographically within the London area and also the exact time of year at which such need is maximal.²⁶ While we plan for surgical emergencies and major accidents, we rarely plan for peaks of demand for medical care, yet each year the admission of patients with COPD in the second or third week of January will stretch hard pressed hospitals.

There is probably little evidence that we fail our patients by a lack of prescriptions; where we may fail them is by over reliance on prescriptions of limited value and a failure to implement non-drug interventions. Pulmonary rehabilitation reduces symptoms and improves exercise tolerance and may be undertaken in hospitals, in the community, or at home.^27–29 Encouragement to exercise is essential and may reduce the risk of exacerbations,³⁰ and reinforcement of training may be needed after an interval. Sadly, too few patients are referred for pulmonary rehabilitation and, in the UK, where you live clearly dictates the pulmonary rehabilitation resources available to you. Many patients with COPD are also failed by not being adequately assessed for supplementary oxygen therapy, whether long term or during exertion. While oxygen is available long term by the prescription of oxygen concentrators and short term from cylinders, no provision is made in the UK for liquid oxygen or for small lightweight cylinders, nor for oxygen conserving devices, all of which might permit those with COPD to exercise more satisfactorily outside the home. In many parts of the country the availability of respiratory nurse specialists to ensure that those with COPD benefit maximally from what is available is also limited.

It is likely that we also fail our patients by a lack of appreciation of the effect of COPD upon quality of life, mood, and relationships. The late Trevor Clay, a nurse who died from COPD associated with an inherited condition, wrote: “Having a long term condition is not about dying—that only takes a few minutes or less—but I’ve been struggling to breathe for over 20 years and I’ve been living a lot and suffering as little as possible”.³¹ However, others are less able to be positive, and depression in this disease is common and often overlooked and undertreated.³²

Dying from cancer or dying from motor neurone disease is unpleasant, but in the UK and in many other countries palliative medicine services and hospices relieve the worst of the discomfort, both physical and emotional. For those with end stage COPD the living death may be protracted, making it harder to know when to intervene with palliative measures, and the palliative measures themselves need dramatic improvement. Opiates may reduce the sensation of breathlessness, but the sedation they induce may be unpleasant for those with respiratory failure. We doubly fail our patients by our inability to modify the underlying disease and by our inability to discover new agents which satisfactorily modify the sensation of breathlessness. Little new seems to have been provided in this field since the work of Guz, Geddes, Woodcock and others 20 years ago.^33–35

We all now have a responsibility to raise the profile of this disease—to prevent its cause, to modify its natural history, and to ensure the implementation of all measures, however small, that may reduce the suffering. We also need to call for more research for more effective interventions for both the disease and its symptoms. Those with COPD often also suffer socioeconomic deprivation. They do not have a loud voice. We need to augment their voice and to campaign against nihilism. If you smoke 30 cigarettes a day and have a myocardial infarction you receive sympathy, abundant health service resources, and research into heart disease is amply funded. If you have a similar nicotine dependence syndrome and develop COPD, few speak up for you, you are fortunate if you obtain the few interventions that might help, and research is poorly funded and not always directed at the key issues.