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Choice at end of life has to be improved – the government must act now

Author: Adrienne Betteley, End of Life Care Programme Lead, Macmillan Cancer Support
01 September 2015

One of the more notable shifts in recent times when it comes to caring for people at the end of life is a growing recognition that a more personalised model of care needs to be adopted.

People should be empowered to choose treatment and have care that both suits and is right for them as an individual.

People at the end of life should be able to live and die in the place and manner of their choosing, but sadly all too often this choice is absent.

We know from the 2013 National Survey of Bereaved People that the majority (73%) of people with cancer at the end of life would like to die at home (1), but ONS data from the same year shows that only 30% of cancer deaths happened at home (2).

At worst, people end up in expensive hospital beds, against their wishes, which can cause them and their loved ones unnecessary emotional distress.

This could be avoided if people at the end of life had timely access to support which could enable them to die at home if they want to. This means access to 24/7 nursing, good coordination of care and access to free social care.

The current landscape for end of life care is very inconsistent and unequal – which can translate into a loss of choice at one of the most important moments in their lives.

We have seen a great deal of recognition of this problem over the past year, from both experts in the field as well as government

The independent review of choice in end of life care sets out specific recommendations for the government that could help improve choice for people at the end of life, while reports by the Health Select Committee and Health Service Ombudsman both concluded in the past year that choice at end of life needs to be improved. Furthermore, the current government also committed to improving end of life care in their general election manifesto.

But all this recognition of the problem will amount to nothing if we do not have the funding to bring about change. 

That is why two Macmillan supporters, Nikki and Marie, who both know first-hand how difficult it can be caring unsupported for someone at the end of life, have written an open letter to the Chancellor George Osborne.

In their strong, moving letter they urge the Chancellor to fully fund the choice review’s recommendations that could improve end of life care in England, so that no one caring for someone at the end of life has to do so alone and without often badly needed support.

Nikki and Marie write: "We think people need to have choice and control over the things that are important to them. As carers, we strongly support these recommendations and believe if implemented they would have a hugely positive impact on people at the end of their life, their family and carers."

This is why Macmillan Cancer Support is urging everybody with an interest in improving end of life care to sign their letter to ensure that the government secure the funding that will enable them to keep their manifesto promise.

References

  1. National Survey of Bereaved People (VOICES), 2013. Office for National Statistics; 2014.
  2. Deaths Registered in England and Wales, 2013. Office for National Statistics; 2014.
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