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Disease lottery revealed in end of life care provision


Nurses must change their approach to end of life care for chronic disease, senior nurses have warned in response to research shared exclusively with Nursing Times.

Patients with respiratory and cardiovascular diseases are significantly more likely to die in hospital than at home, compared with patients with cancer, according to the first report from the National End of Life Care Intelligence Network.

People with COPD have told me they were dying from the “wrong” disease

The report, which brings together for the first time national data on where people die, at what age and from what cause, also reveals a postcode lottery in availability of end of life care support across England.

It shows that between 2005 and 2007, 69 per cent of patients who died from respiratory causes, such as chronic obstructive pulmonary disease, died in hospital, while only 13 per cent died in their own home - the remainder dying in other settings such as hospices.

The figures for cardiovascular causes, such as heart failure, are similar. Yet of patients dying of cancer, 24 per cent died at home and 48 per cent died in hospital.

While specialist nurses acknowledged the trajectory of cancer was more “predictable”, they say significant improvements in care planning and education could help more patients with other long term conditions choose to die in their own home.

The 2008 national end of life care strategy said high quality end of life care should be available for patients whether they chose to die in hospital, in their own home or in another setting.

British Heart Foundation head of nursing services Shai Davies said a change of mindset was needed to make that available to all terminally ill patients. She said: “Unless we take a coordinated approach, we’re not going to make it happen. It’s about educating each other at ground level.”

University Hospitals of Leicester Trust respiratory nurse consultant Jane Scullion said specialist nurses needed to start “recognising that people will die” from their chronic disease, which they do not always do at present.

She said nurses needed to start having conversations with chronic disease patients about where they wanted to die, as there was “nothing worse than dying alone, breathless on a hospital trolley”.

The British Lung Foundation has 49 specialist nurses trained in palliative care. Its chief executive Dame Helena Shovelton said the lack of nursing support services to allow more patients to die at home was a major problem. COPD patients had told her “they were dying from the ‘wrong’ disease”, due to lack of palliative care support compared with cancer.

The network’s report also reveals significant geographical differences in where people die.

In London the lowest proportion of people die at home - 18 per cent between 2005 and 2007. That compares with 21 per cent in the North East and 20 per cent in both the South West and the East of England.

Edwin Pugh, until recently NHS North East clinical lead for end of life care, said the strategic health authority had made rapid round the clock access to an appropriately qualified nurse its top priority for end of life care. He said: “We have been hammering the drum on this.”

South Tees Hospitals Foundation Trust last week launched a two year pilot of a nurse led end of life discharge service, offering cancer and non-cancer patients the chance to leave hospital and spend their last days at home or in a hospice. 

At local council area level Waltham Forest and Redbridge - both in east London - had the highest proportion of patients dying in hospital, while South Cambridgeshire had the highest proportion dying at home (see box).

Margaret Saunders, clinical director of the Arthur Rank Hospice, run by Cambridgeshire Community Services Trust, said the area’s high rate of success on home deaths was down to a collection of factors but praised local community nurses, who she said were very keen on supporting patients on end of life care.

A spokesman for NHS Waltham Forest said: “It’s a simple fact that people in more deprived areas are more likely to die in hospital”. He said the primary care trust was now prioritising offering choice in end of life care.

In a statement, a spokesman for NHS Redbridge said the PCT had recently negotiated a contract that would allow patients to receive nursing care in their home for the last five days of their life.

Where people are dying

Council areas with highest proportion of deaths in hospital

Waltham Forest 78%

Redbridge 73%

Ealing 72%

Barking and Dagenham 71%

Newham 71%

Council areas with highest proportion of deaths at home

South Cambridgeshire 27%

Copeland (Cumbria) 27%

East Cambridgeshire 27%

Teesdale (Durham) 26%

Norwich 25%

See the practice section in next week’s Nursing Times for guidance on supporting patients in end of life care


Readers' comments (4)

  • Nurses must... its a constant cry. But it is not nurses who admit patients. I am a District Nurse and to me cancer is not the only palliative condition but it is the main one that brings us referral for palliative care. Where we see people with other conditions it's because the GP makes the referral after they have discussed preferred preference of care. Do nurses really have to shoulder the blame for everything?

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  • Why is it the nurse must always be held responsible for everything yet when the decisions are being made nurses are hardly consulted. As for the figures produce of people dying in hospital this report should have looked further i.e people's living conditions, do people have enough family support at home, can social services provide the addition support some of these patients may need. This report needs to look at the bigger picture.

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  • I work on a respiratory ward and see many COPD patients who we deem our 'regulars'. They are repeatedly admitted, each time worse than the time before. It is a terminal condition and we get to know many of them and support them through the process. Many of them die with us. Patients and families are very frightened by the breathlessness which can be crippling and distressing. They often have nebulisers and oxygen at home but still feel they need to come into hospital for support.
    The patients with lung cancer definately get more support externally and more options to move to palliative care units or have a fast track discharge home with carers, but cancer often involves a quicker deterioration than patients with COPD.
    I feel offended that a hospital ward is considered the worse place to die. We offer good care and support to our patients who are often too frightened to stay at home due to their breathlessness which is exacerbated by anxiety. This is also a large burden to lay on the families.
    To watch a loved one die in such circumstances is very hard and we help our patients and make them comfortable with MDT support and approaches such as the care of the dying pathway which I feel has helped ward nurses give good palliative care.

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  • The Gold Standard framework for non cancer conditions has already mapped out disease trajectory for non cancer conditions. I would of thought that by simple implementing this outcome would start to be achieved. However cast your mind to the revolving door patients and ask why they continue this action. Dedicated 24hr responsive community support is not ready or available. Dr K Thomas (GSF Authour) outlines very clearly when disease reaches the terminal phase. Doctors GP's and Clinical nurse specialists need to lead the implementation as nurses particularly Community Nurses already have End of life skills which of course could be added to. So lets see the Governments, End of Life Stratergy money being spent as it was intended management.

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