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%
Barking and Dagenham 71%
Council areas with highest proportion of deaths at home
South Cambridgeshire 27%
Copeland (Cumbria) 27%
East Cambridgeshire 27%
Teesdale (Durham) 26%
See the practice section in next week’s Nursing Times for guidance on supporting patients in end of life care