End of life. Not end of choice

Too often, people’s wishes about care and support at the end of life aren’t being met. This needs to change. Everyone should be able to die in the place and manner of their choosing.

End of life care: One year on

After years of campaigning by Macmillan and others, in July 2016 the Government made a commitment to improve end of life care in England.

This was a massive campaign success, won by you for people at the end of their life.

In their response the Government set out an action plan to deliver high quality, personalised end of life care. But one year on after this commitment, have things changed for the better?

What we want to happen

New analysis from Macmillan of the latest results from the National Survey of Bereaved People shows that over 12,000 cancer patients who die in England each year spend the last two days of their lives without adequate pain relief

We want to see the Government make their promises a reality so that we start seeing improvements in how people die.

On the anniversary of the 2016 commitment made to people at the end of their life across England, Macmillan is urging the Government to stick to their promise to prioritise high quality, personalised care for dying people.

How you can help

Over the coming months we’ll be campaigning to make this happen, and we need your help to do it. 

Join our e-campaigner network to keep up to date with all the ways you can support our end of life campaign.

We all deserve high quality end of life care 

  • Almost 80% of people want to die at home, however only 30% are able to do so.
  • If nothing is done by 2020, we estimate 1.3 million people will have had their last wish denied. 
  • Shockingly, only one in five of those with cancer, who are able to die at home, have complete pain relief all of the time during the last three months of life.

Sadly death, dying and bereavement affects us all. Nearly 144,000 people a year in England are expected to die of cancer by 2020 – that’s one person dying of the disease every four minutes.

Currently, too many of these patients die without adequate pain relief or without being involved in vital decisions about their end of life care; including where they would like to spend their final days. Often people wish to die at home but most are unable to do so because of a lack of support.

We believe everyone should be able to die in the place of their choosing while receiving the high quality, personalised care to ensure they are comfortable and pain free in those final moments.

2017 General Election

At the 2017 General Election we asked all candidates to prioritise end of life care as part of our Cancer Matters campaign.

Our Cancer Matters manifesto asked election candidates to support making sure that everyone approaching the end of their lives receive the best possible care and support and can die in the place of their choice.

Over 1700 campaigners took part in the campaign, contacting their election candidates to make sure end of life care was a priority in the new Parliament.

The Conservative Party’s general election manifesto also reconfirmed the commitment to improve end of live care.

The campaign so far

Our voices were heard

On 5 July 2016 the government announced a new commitment to improve end of life care in England.

This was the announcement we’d been campaigning for. It is vital to ensure that end of life doesn’t mean end of choice.

‘We lost Dave, our lovely brother, partner, dad, son and uncle just over two years ago. I am pleased that the government has listened to the voices of those who have experienced just how hard it can be caring for someone at the end of life.’ Marie, a Macmillan end of life care campaigner

The government’s response to the independent review of choice in end of life set out an action plan to deliver high quality, personalised end of life care. This means everyone at the end of life will be given: 

  • A personalised care plan 
  • The potential for a new care coordinator role 
  • Better access to nurses and healthcare professionals in the community 

To find more about the governments 2016 promises, read the full response in 'Our commitment to you on end of life care'.

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Last Wishes Matter

To help raise awareness that last wishes matter we asked you to share a wish. We wanted to show that while we all have different wishes throughout our lives, we all share the desire to choose where we die.

We made it easy for you to tweet your wish to your local MP so that they know where you stand on this important issue too. Thanks to all you who took part.

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Our campaigners wrote an open letter

Nikki and Marie’s experience of caring for their loved ones moved them to write an open letter to the Chancellor, George Osborne – supported by Macmillan.

Nikki and Marie took their letter to an event we held in Parliament. They shared their personal experiences of looking after someone at the end of their life and urged MPs and Peers to show their support.

Thank you to over 20,000 campaigners who signed Nikki and Marie’s letter. We delivered your signatures to Downing Street, to show the Chancellor we wanted his commitment in the government’s 2015 spending review.

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References

iOffice for national statistics, 2016. National Survey of Bereaved People 2015 (VOICES). 10% of all respondents disagreed or strongly disagreed that the cancer patient had sufficient pain relief in the last two days of life (Q35), among those who had pain (88.5%). Excludes those who are not sure. (accessed June 2017)

Macmillan (June 2017) estimation of over 12,000 people each year calculated by applying 10% to England 2015 cancer mortality figures of 122,580 deaths (88.5% of the total of 138,509 deaths, to represent those who had pain relief). Office for National Statistics, 2016, Cancer Deaths registered in England and Wales in 2015. (accessed June 2017)