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.

  • The majority of people (64%) want to die at home, however less than a third (30%) are able to do so.
  • An estimated 48,000 people experience poor care in the final three months of their lives.
  • More than 12,500 cancer patients (10% of those who die in England each year) spend the last two days of their lives without adequate pain relief.

Quality care and choice at the end of life

We all deserve high quality, personalised care at the end of life.

We should all be able to die in the place of our choosing, that meets our wishes about the care we receive in those final months and years.

Right now, the reality is different. Not everyone is getting high quality, personalised care at the end of life.

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Poorest cancer patients let down at end of life

Macmillan’s research reveals the situation is even worse for people from the poorest areas in England at the end of life.

Our report, ‘The Final Injustice’, highlights the startling variation in end of life care in England, and emphasises the urgent need for action on the Government’s commitment.

  • Cancer patients from the poorest areas are 18% more likely to die in hospital than those from the least deprived areas. This is despite most people with cancer preferring to die at home or in a hospice.
  • Cancer patients from the poorest areas had in total around 15,000, or 15%, more emergency hospital admissions in the final year of life than those from the least deprived areas.
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What needs to change

In July 2016 the Government made a commitment to improve end of life care in England, setting out an action plan to deliver high quality, personalised care.

This was a massive campaign success. But one year on, there is still a long way to go to turn this plan into action that delivers better care for cancer patients at the end of their life.

In March 2017, nearly half (41%) of draft local health plans had no mention or little detail of how end of life care would be improved (End of Life Care Coalition, analysis of STP draft plans in England).

We’re urging the Government to stick to their promise to prioritise high quality, personalised care for dying people, no matter where they live, or their background.

We want to see:

  • The Government clearly set out how it intends to honour and resource its commitment to improve the quality and choice of care for people at the end of life.
  • Local health leaders to plan for, and provide, sufficient resources to deliver high quality and personalised end of life to all patients.
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How you can help

We need your help to make improved end of life care a reality for people, and ensure the Government make progress on their commitment.

  • Join the campaign to make sure people get access to high quality care that reflects their preferences, no matter where they live.
  • Join our e-campaigner network to keep up to date with all the ways you can support the campaign.

The campaign so far

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.

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5 July 2016 - The government commits to improve end of life care

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)