Huge discrepancies in end of life care highlighted

Responding to the review into the funding of palliative care announced by Andrew Lansley, Macmillan Cancer Support released its own report, which highlights just why such a review is needed.

In another example of the postcode lottery in England, the report shows up to 19 million people do not have access to round the clock care at the end of their life should they want it in the area they live. The result can be devastating for people and their loved ones, as it could improve the quality of patients’ lives in their final weeks and months and enable them to die at home if they wish. 

Even though over half of people (57%) who have a cancer diagnosis would like to spend the last weeks and days of their life at home less than a quarter (24%) actually do.

Worryingly, the recent Freedom of Information request by Macmillan Cancer Support revealed that nearly half of PCTs in England are not providing 24/7 community nursing to all patients at the end of their life. This is despite the Department of Health’s End of Life Strategy for England in 2008 calling on PCTs and Local Authorities to make access to community nursing at any time of the day or night available to all end of life patients. 

Ciaran Devane, Chief Executive at Macmillan Cancer Support, said: ‘We simply cannot claim to have a world class health service when we continue to let down our most vulnerable patients just when they need the NHS most. People must have the fundamental right to die at home if they want to. It is not right that so many end up dying in hospital, against their wishes, because they do not have the support to stay in their own home.

‘We welcome this review by the Government into end of life care but it must fill the gaps in service provision to make 24/7 care a reality.’

Macmillan Cancer Support’s report also shows that since the last survey of PCTs three years ago by the National Audit Office, little has changed and progress has been disappointingly slow.  Where cancer patient’s wishes are not met it can lead to traumatic experiences for patients and their families. 

Vivienne, 63, from Northamptonshire, whose husband died of rectal cancer in 2009, said; ‘I’d got to the point where I couldn’t cope at home. Our GP had requested a district nurse for us but we didn’t even get a call, let alone a visit. When a place became available at a hospice, 20 minutes away, it was a huge relief and although Roger wasn’t one for talking about end of life, he had asked that I be with him at the end.  It didn’t happen like that.  He died alone in the morning before I got there.  I suffered terrible guilt that his one wish, I’d not been able to keep. If there’d been support for us at home, I’d have been by his side.’

A number of PCTs cited financial constraints as a reason why 24/7 community nursing was not provided for people at the end of life. This is concerning, especially when there are strong economic benefits to the NHS supporting patients dying at home rather than at hospital. The average cost of keeping someone in hospital for their last year of life is £222 per day. In comparison the average cost of home/community care per day is £28, nearly eight times less.

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