equal treatment for all?
by Lynn Eaton
Latest figures from the Office for National Statistics show that, in 2001, cancers were still the major cause of death in the UK, causing just over a quarter – 26% – of all deaths.
© iStockphoto / Tomaz Levstek
Getting cancer is most people's biggest fear and – maybe because of that – there are relatively high levels of support for cancer patients, usually provided by charities like Macmillan Cancer Relief and Marie Curie nurses.
But what about some of the other killer illnesses that may be equally painful, just as emotionally difficult to deal with and for which patients need just as much help and support?
heart disease
Heart disease is the second highest cause of death in the UK, representing 20% of the total number of deaths. Although the common image is that someone dies suddenly from a heart attack (and just over 46,000 people died that way in 2001), the reality for many patients with heart disease is very different.
'Many people think it is just a short, sharp shock,' says Jo Hudson from the British Heart Foundation. 'But it is about living with a damaged heart. There are things that are similar to living with cancer. For instance, there is no cure, unless you get a heart transplant.'
Jackie Lodge, head of cardiac care with the Foundation, adds that many people with heart disease are elderly, so they may already be suffering other illnesses as well.
Despite this, there has been very little provision for providing on-going care and support to people with the disease. The charity recently (8 June 2002) launched a campaign to draw attention to the needs of such patients and is appointing 20 new heart failure nurses.
heart failure nurses
Although there have always been nurses for people who have had a heart attack, these nurses would provide support and help patients deal with chronic heart failure. This would typically include advice on their medication, helping them manage frightening situations, like waking up in the night feeling unable to breathe, and advice on coping with fatigue.
Sue Hutton, a palliative care nurse specialist with Macmillan Cancer Relief, agrees cancer patients do get a relatively good deal.
'Generally, the care for people with cancer is better in some respects,' she says. 'There is a better set up. With chronic heart disease, palliative care is only just coming through. It is more advanced for cancer.'
The importance of providing support for people who are dying from heart disease is mentioned in the government's National Service Framework for chronic heart disease – a document published in March 2000 which sets out targets for reducing and managing heart disease. This was the first time the need for such support had been formally recognised by the government.
Sue currently has two patients who highlight the discrepancies – one is dying from cancer of the gall bladder, the other from end-stage heart and renal failure.
'The one with cancer wants to go home and I have been able to set up a district nurse and Marie Curie nurse. The other lady, all she will get is an end-stage nurse. We won't be able to get Marie Curie, which is a night sitting service.'
poor provision for respiratory disease
After heart attacks, respiratory disease comes next in the main causes of death, accounting for 13% of deaths. Stroke and related conditions account for 11% of deaths.
Yet provision for people with these conditions is also poor. Nurses and doctors who specialise in caring for people who are dying – so called palliative care – tend to concentrate on people with cancer. And hospices, although they wouldn't restrict themselves just to caring for people with cancer, tend to have more patients with that disease.
Ironically, the one area to have developed good support services for people dying was in HIV and Aids. Yet they have seen only a tiny number of deaths, by comparison, partly as a result of the effective new drugs available. In 2001, 129 men and 48 women died of the condition compared to more than 6,000 with diabetes.
Sue Hutton agrees that the support provided for people dying from HIV/Aids has shown what can be done. "But it is a question of resources – you need a national strategy – that is the only way to move things forward."
the chance to talk
Ideally, she argues, all people with a terminal illness should have an opportunity to discuss what is happening with their disease and their treatment. There might also come a time when it is not possible to offer any more treatment and they need to be prepared for that.
'For a lot of patients, there is a great fear that stopping treatment means stopping all support. But then it is about re-focussing hope. They need to think about it being a dynamic and changing process. Then, you would be looking at quality of life and symptom control. It is about giving them time to express their concerns and the concerns of family members.'
'If you can focus on the patient dying in a way that they want to, in a place they want to, with appropriate people around, then you have got a good result.'
Dying is different for people who haven't got cancer, but have some other life-threatening illness, she says. "Sometimes it can be more difficult to predict when they are going to die. If you have lived with a chronic illness and you have had repeated admissions to hospital, it is more difficult to accept that you can't do that any more and that you have reached the end of the road."
patchy provision
Pauline Kingston, who is chair of the Royal College of Nursing's palliative nurses forum, is equally concerned at the patchy provision people with disease other than cancer receive.
'Our forum has done everything we can to push for services for people who are dying, regardless of the disease,' she says. 'At the moment, you can get a lot more if you have got a diagnosis of cancer. But we want services that are good for everybody that is facing death.'
Not providing appropriate services is, she says, like saying people with heart disease don't have pain, when they do.
'It is just unrealistic to say that people don't have the same emotional problems if they are dying from another disease,' she says.
In her experience, although organisations like Marie Curie and Macmillan nurses are primarily there for patients with cancer, they will often provide a service to patients who have other terminal illnesses.
Ideally, people who are at home should be able to access a night-time carer and 24-hour nursing services, she believes.
'People's preferred place of death is at home, but only 28.3% of people achieve this. It depends where you live where you can get to die. Some areas have excellent services, like 24-hour nursing care, and are able to keep patients at home. But it is not a cheap option.'
help and info
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Macmillian Cancer Relief
89 Albert Embankment
London SE1 7UQ
Macmillan Cancerline: 0808 808 2020 (Mon-Fri, 9am-6pm)
Textphone: 0808 808 0121
E-mail: cancerline@macmillan.org.uk
Website: www.cancerlink.org
Contact the Cancerline for cancer information and support, details of local organisations, relevant publications and other resources. Staffed by people with experiences of cancer. The website has more information.
Marie Curie Cancer Care
89 Albert Embankment
London SE1 7TP
Tel: 0800 716 146
E-mail: info@mariecurie.org.uk
Website: www.mariecurie.org.uk
Marie Curie Nurses care for seriously ill cancer patients in their own homes and should be accessed through the district nurse or GP. Marie Curie also has 10 hospices around the UK.
British Heart Foundation
14 Fitzhardinge Street
London W1H 6DH
Heart Information Line: 08450 70 80 70 (Mon-Fri 9am-5pm)
Website: www.bhf.org.uk
Plays a leading role in the fight against heart disease and provides a range of information about the causes, prevention and treatment of the problem. Website contains a glossary, details of publications, plus practical advice on how to protect yourself from heart disease.
websites
Patients Talking
www.patientstalking.com
A website for people to read and write diaries about a wide range of medical conditions and, if requested, confidentially make contact with others. It can also help people who may not directly have a condition but have concerns for a friend or relative with an illness.
Department of Health: National Service Frameworks
www.dh.gov.uk
The link to the National Service Framework for Coronary Heart Disease.
British Cardiac Patients Association
www.bcpa.co.uk
The patient and carers independent voice. Offers help, support, advice and reassurance to all cardiac patients, their families and carers. Provides advice on how to prevent heart disease and stay healthy.
The Pharmaceutical Journal – Palliative Care
www.pharmj.com/Editorial/20001021/special_feature/palliative_care_603-614.html
An editorial on all aspects of palliative care and the evidence for provision of care to patients with advanced cardiac and respiratory diseases.
reading
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Care of the Dying: A Pathway to Excellence by John Ellershaw and Susie Wilkinson (Eds) (Oxford University Press, 2003) |
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Comprehensive Coronary Care by Nigel Jowett and David Thompson (Bailliere Tindall, 2002) |
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The Healthy Heart Programme: How to Prevent and Reverse Heart Disease in Three Easy Steps by Dr Richard Fleming (Michael Joseph, 2004) |
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Reflections on Palliative Care: Sociological and Policy Perspectives by David Clark and Jane Seymour (Open University Press, 1998) |
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(July 2002, resources updated January 2005)
