End-of-life care issues in COPD

27 Mar 08

There is a 24-39% five-year survival rate for those with severe COPD, and more than 25,000 people a year in the UK die of COPD – 5% of all deaths.

The mortality and associated symptom burden is similar to that of those with lung cancer, but the need for holistic palliative care has only recently been recognised.

A palliative care register has also been added to the QOF and may lead to a more co-ordinated approach.

Identifying patients

Prognostic uncertainty often prevents end-of-life issues being discussed. Features related to a poor prognosis in COPD include FEV1 of less than 30% predicted, frequent exacerbations, long-term oxygen therapy and cor pulmonale. It has been suggested that if the clinician expects a patient to die within the next 12 months, this is a strong indication to adopt a palliative care approach. It is a question GPs could ask themselves at annual reviews.

Advance care planning

GPs are in a key position to both deliver and co-ordinate care for the patient dying from COPD. Patients with severe COPD need to be given honest and clear information, summarised in the box lef. They are often receptive to this dual agenda: ‘Hope for and expect the best and prepare for the worst’.

Advance care planning is seen by some as a way of preparing for the worst and has been implemented successfully in the US.

Although UK GPs acknowledge a need to discuss end-of-life issues with severely ill COPD patients, it is not reflected in their behaviour. This probably relates to unease at being too prescriptive in planning ahead, and the fact that patients can adopt new perspectives – such as the decision to receive ventilatory support during an exacerbation – as their disease progresses.

A helpful development is a move from a prescriptive advance directive to an approach involving the patient’s values.

Symptom control

Patients with COPD at the end of life have physical and psychological needs at least as severe as patients with lung cancer. Breathlessness, anorexia and constipation feature in severe COPD along with significant problems with fatigue, pain, anxiety and depression and poor sleep.

The evidence base for symptom control in end-stage COPD is poor, and management relies on a mix of best practice and experience.

Refractory dyspnoea is common and hard to treat. Having optimised bronchodilator therapy, oxygen and opiates are the main palliative pharmacological treatments.

Fear of respiratory depression with opiates has probably led to them being underprescribed for dyspnoea and pain in these patients. But once a palliative approach has been adopted, symptom control should take precedence. A systematic review supports the continued use of oral and parenteral opiates in advanced disease, and there is significant symptomatic benefit using slow release 20mg morphine sulphate once daily.

Lower strength morphine preparations allow dose titration for opioid naive patients with COPD. Nebulised opiates appear no better than nebulised saline.

Although patients report considerable symptomatic benefit with short-burst oxygen, there is little evidence for the effectiveness of oxygen in the palliation of dyspnoea. The patient’s distress may be eased by increasing their sense of control, for instance by using a fan to ease the sensation of dyspnoea, learning relaxation techniques, humidifying the air and providing an unobstructed view.

Weight loss and muscle wasting is a common feature in severe COPD and a source of anxiety for carers. Patients should be encouraged to snack on high-energy foods frequently throughout the day.

Anxiety and depression are common features and the NICE guideline on COPD recommends treatment with conventional pharmacotherapy accompanied by explanation of the rationale for treatment.

Secondary and specialist palliative care

Patients with severe COPD may be receiving secondary care input, and it appears that some patients and carers benefit from the reassurance and surveillance provided. There will come a point for many patients when community-based care is more appropriate. Judging this transition point requires experience, sensitivity and open communication between the hospital team, GP and patient.

The GP is in a key position to ensure community staff and specialist palliative care teams are working together. Most specialist palliative care services in the UK accept patients with non-malignant life-threatening illness. The issue of referral needs to be discussed sensitively with the emphasis on the positive aspects of help – symptom control, psychosocial support and a valuable information source.

Dr David Seamark is a GP in Honiton, Devon, with a research interest in palliative care and respiratory illness and an honorary senior lecturer at the Peninsula Medical School.

Dr Clare Seamark is a GP in Honiton, Devon, with a research interest in palliative care.

Dr David Halpin is a consultant respiratory physician and senior clinical lecturer at the Royal Devon and Exeter Hospital, Exeter. He chaired the NICE Guidelines Committee on COPD.

Competing interests: none declared

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Story date 27 Mar 08

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