Comment

Support till the end

Having spent a number of years working as a district nursing sister, I remember the sheer frustration of not being able to get enough support for people who were in the last months of life.
Picture credit: Getty

Obtaining help with things such as washing and dressing or preparing meals, which should be so simple, was often impossible. The strain that this put on family and friends sometimes pushed them to breaking point.

End of life care is now at a critical stage. Not enough people receive good quality individualised care we need a system that provides everyone at the end of life the right level of support, whether medical or non-medical.

Research commissioned by Macmillan Cancer Support has shown that almost half of people with terminal cancer have no support beyond friends and family. This is despite the fact that more than four in five people with cancer at the end of life have needs serious enough to qualify for formal social care.

This lack of support means many people are admitted to A&E when they otherwise

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Picture credit: Getty

Obtaining help with things such as washing and dressing or preparing meals, which should be so simple, was often impossible. The strain that this put on family and friends sometimes pushed them to breaking point.

End of life care is now at a critical stage. Not enough people receive good quality individualised care – we need a system that provides everyone at the end of life the right level of support, whether medical or non-medical.

Research commissioned by Macmillan Cancer Support has shown that almost half of people with terminal cancer have no support beyond friends and family. This is despite the fact that more than four in five people with cancer at the end of life have needs serious enough to qualify for formal social care.

This lack of support means many people are admitted to A&E when they otherwise might not be; seven out of ten people with terminal cancer who felt they were not getting enough support ended up making an unplanned or emergency visit to hospital.

This amounts to one in four of all those with terminal cancer. Not only is this distressing for those affected, it has hard-hitting financial implications for the NHS. Hospital beds are expensive and oversubscribed and people with terminal cancer often could be better supported at home than in A&E.

The research also shows the profound emotional effect that accompanies this lack of support. The vast majority of people with terminal cancer are already in emotional distress, with nine out of ten burdened by feelings of depression and sadness, while almost half feel guilty. No one should feel guilt at such an important time.

As a district nurse I saw many situations in which people were admitted to hospital at the end of their lives because their family members were doing all the caring. Naturally, they became exhausted, as did I.

My mum died of oesophageal cancer last year. While we had great support, particularly from the Macmillan team, we had no social care support. The worst period was in her last week of life, when she was bed bound. I stayed up all night and then helped her for six consecutive days and nights, which was thoroughly exhausting and emotionally draining.

We know from the 2013 National Survey of Bereaved People that 73% of people with cancer at the end of life would like to die at home. But data from the Office for National Statistics the same year shows that only 30% of deaths from cancer happened at home. This approach to end of life care – where patients with terminal cancer are made to feel guilty or have to spend precious time in A&E because the support is not there for them at home – has an inexcusable emotional effect on people with cancer and their loved ones.

Without funding, this unacceptable situation will continue. It is vital that the government honours its manifesto commitment to end of life care and fully funds the recommendations of the independent review into choice at the end of life, so no one at this point feels alone and unsupported.

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