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Palliative care for people with end-stage non-malignant lung disease.

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VOL: 101, ISSUE: 06, PAGE NO: 48

Ann Shuttleworth, BA, is a freelance health care journalist

These patients have complex palliative care needs, particularly as some - whose condition is believed to be in its end stage - survive for months or years. Despite the high numbers, and the fact that many people live for decades with PNMLD, access to specialist services is highly variable across the UK.

These patients have complex palliative care needs, particularly as some - whose condition is believed to be in its end stage - survive for months or years. Despite the high numbers, and the fact that many people live for decades with PNMLD, access to specialist services is highly variable across the UK.

Karen Heslop, respiratory nurse specialist at the Royal Victoria Infirmary, Newcastle, says this contrasts starkly with services for people with lung cancer - despite the fact that lung cancer causes fewer deaths (BTS, 2000).

'If you're diagnosed with lung cancer you immediately have access to all sorts of services, such as hospice day care, help with benefits and night sitters - you can even get Indian head massage and aromatherapy if you want,' she says. 'People with non-malignant disease generally get nothing, yet their disease is still terminal.'

Ms Heslop's observation is backed up by Ahmedzai (2003). His review of needs and service provision for these patients found that they and their carers are less likely to receive terminal care from district nurses and specialist palliative care nurses than those with lung cancer.

Palliative care needs
Edmonds et al (2001) found that patients dying from COPD experienced similar symptoms to patients with lung cancer, such as pain dyspnoea, cough, anorexia, emesis and constipation. They also experience low mood to the same extent, but the more prolonged course of their disease means they suffer for longer.

The chronic nature of progressive lung disease presents a number of problems in providing palliative care - not least identifying when patients need it. 'These patients are dying by inches, so it's very difficult to identify when they are in the terminal stages,' says Rachel Booker, lead for COPD at the National Respiratory Training Centre. 'Most professionals find it difficult to predict the individual prognosis of these patients.'

Heather Matthews, respiratory specialist nurse at the James Paget Healthcare NHS Trust, Great Yarmouth, agrees. 'Some patients defy expectations. You think they only have a few months left to live and they go on for years. In fact it may not be their lung disease that kills them - they often die from comorbidities such as heart failure.'

Even when patients are identified as being in the terminal stages of disease, they encounter a range of barriers to receiving palliative care. Ahmedzai (2003) found reluctance among palliative care services to take on non-cancer patients, even though their medical needs are similar. Although he found evidence that attitudes were changing, he questioned whether palliative care services have the capacity to cope with the additional demand that these patients would generate.

Even when patients' palliative care needs are recognised by non-palliative care professionals, they are not always m

Although Ms Matthews has experienced problems in obtaining specialist palliative care for her patients, she believes there is a way round this. 'We have a good relationship with Macmillan Cancer Care in this area, and while they can't take all our patients, they can often give us advice,' she explains.

Liaison with palliative care colleagues can also be useful. 'Respiratory professionals are often reluctant to prescribe opioids because they risk further suppressing patients' lung function,' explains Ms Matthews. 'This is something palliative care professionals are extremely skilled in and can advise us about. They can also often access services and resources that I can't.'

Ms Matthews also believes it is helpful to know what care patients want at the end of their life. 'The best thing is if a patient says to me, 'I think I'm getting a lot worse - maybe we need to think about what to do over the next few months',' she says. 'It can be difficult to raise the issue yourself, although I generally find that patients appreciate honesty.'

James Paget Hospital has devised an advance directive that enables all patients to specify when they would not want aggressive treatment. Ms Matthews finds this extremely useful for patients with lung disease, providing an acceptable way of raising an issue that few people want to think about.

Supportive care
Due to the long-term nature of PNMLD, and the fact that its slow progression often makes it difficult to identify the beginning of its terminal phase, Ahmedzai (2003) suggests that an holistic approach may be more appropriate than focusing on palliative care. He proposes that patients be given supportive care that is determined by their physical, psychosocial, information, rehabilitation and emotional needs throughout their illness.

Many respiratory nurse specialists offer supportive care along the lines suggested by Ahmedzai, taking account not only of their patients' needs but also those of their carers. 'Carers are often very frightened,' says Ms Matthews. 'Often when I'm on my way out of a home visit they'll come outside with me to ask questions away from the patient.'

Patients' holistic needs can be extremely complex and, for some, the physical effects of their disease are not the main problem. Ms Heslop recognised that, for many, emotional and psychological problems were the worst aspect of their disease. She undertook a postgraduate diploma in cognitive behavioural therapy and uses it to increase patients' psychological coping skills.

'Many of my patients are seriously depressed, which is hardly surprising given the situation they are in. Many live alone and they are terribly isolated. One patient who lived alone hadn't been out of his house for 10 years when he came to us.

'When he needed anything from his GP he'd phone, and rather than come to see him, the GP would just write up the prescription and get the pharmacist to deliver it. He just never saw anyone. Helping these patients to find coping techniques can make a huge difference.'

Ms Heslop believes respiratory services need to take a pragmatic approach to care. 'We need to help patients to cope with their illness rather than hope for a cure, because their disease cannot be cured, yet what we call end-stage can go on for years,' she says. 'We have to manage their symptoms and give them the best quality of life possible in these last years.'

Pulmonary rehabilitation - A particularly effective way of improving patients' quality of life is pulmonary rehabilitation, for which the National Institute for Clinical Excellence (2004) recommends all patients with COPD be assessed. Pulmonary rehabilitation aims to reduce symptoms, disability and handicap and to improve functional independence through a combination of physical training, disease education, and nutritional, psychological, social and behavioural intervention.

Ms Heslop's clinic provides pulmonary rehabilitation, and she is clear about its benefits. 'Many patients go into a spiral of decline in which things like walking upstairs makes them breathless, so they avoid doing them as far as possible, reducing their fitness levels even further,' she explains.

'Pulmonary rehabilitation aims to halt this decline and encourage them to take exercise despite their breathlessness. They are advised to stop whenever they become breathless, and taught distraction techniques to help them avoid becoming anxious.

'This can be something as simple as counting back from 100 or naming all the players in the Newcastle football team, but it takes their mind off their breathing, and helps them recover.'

As with many respiratory services, however, provision of pulmonary rehabilitation is inadequate. Ms Heslop's was set up without specific funding and is run on a shoestring - in many areas there is nothing. Ms Heslop believes that every primary care trust should have a respiratory team, able to work across primary and secondary care wherever needed.

Non-malignant lung disease causes more deaths than lung cancer, yet patients receive far fewer palliative care services. Respiratory nurses can act as a linchpin in bringing in the expertise of other specialists and ensuring patients receive all the support that is available. However, these patients need holistic care throughout their disease, and significantly more services are required to meet these needs.

Ms Johnson, aged 60, presented at a chest clinic for pulmonary rehabilitation due to severe COPD. Her oxygen saturation was down to 88 per cent and she needed oxygen therapy.

The condition forced Ms Johnson to retire from work, after she had begun to experience panic attacks when she left the house, fearing her breathlessness would overcome her.

On presentation at the clinic she was on the borderline of clinical depression and had high anxiety scores. She had not left her house for four years, and was showing signs of agoraphobia.

The respiratory nurse gave Ms Johnson advice about coping with panic attacks, and set her small targets - initially to walk to the garden gate, then to the local shop.

If she experienced breathlessness, the nurse advised her to sit on a wall until she got her breath back. She reassured Ms Johnson that it was fine to do this as many times as she needed to.

Ms Johnson made good progress, and gradually increased her exercise and trips out of the house. Her anxiety score reduced, and she recently called the respiratory nurse to tell her she had been out and done all of her Christmas shopping for the first time in four years.

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