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End of life

Whilst dying is inevitable, and universal, that is the only certain thing about it. So much else is unpredictable. It is therefore vital to offer people choice and control over the things that are important to them at this point of maximum vulnerability in their lives.

Dying, death and bereavement are important parts of everyone’s lives. They happen to us all, and many of us will be affected by the death of people close to us. But whilst dying is inevitable, and universal, that is the only certain thing about it. So much else is unpredictable. It is therefore vital to offer people choice and control over the things that are important to them at this point of maximum vulnerability in their lives.

Macmillan believes this means putting into practice a comprehensive and consistent approach to end of life care that offers and fulfills individual preferences, and helps to overcome the lack of control that many feel at this difficult time.

Advance Care Planning

A video exploring Advance Care Planning

At the Crossroads: How can the NHS Long Term Plan improve end of life care in England? — read the report

Our report,'At the Crossroads: How can the NHS Long Term Plan improve end of life care in England?',  looks at how national and local systems need to work together to seize the opportunities contained in the NHS Long Term Plan for England and push forward to achieve lasting improvements in end of life care.

The NHS Long Term Plan has set the national direction of travel for the NHS in England for the next 10 years and outlines that end of life is a priority area for improving care. This needs to translate into action now.

This report is based on research and insight gathered from healthcare professionals working on the front line. It is their real experience of trying to deliver personalised care for people at end of life in what remains a fragmented system. These professionals ranged in location and job title, but there were many similarities in what they had to tell us. The conversations are framed around seven commitments in the NHS Long Term Plan we have identified as being most relevant to end of life care. For each commitment, we address what needs to happen in health and care to ensure services can be successful in delivering improvements to end of life care.

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Missed Opportunities — read the report

Our new report, ‘Missed Opportunities’, outlines the vital role Advance Care Planning (ACP) can play in ensuring a dying person’s wishes are met. It explores the barriers to early advance care planning discussions among people approaching the end of life and health and social care professionals.

The individual stories that have been shared in this report show how giving someone genuine choice about how and where they are cared for in their final days can allow them to achieve a ‘good’ death. However, they also reveal how a failure to plan for an individual’s final weeks and days can have numerous and costly consequences.

The report sets out recommendations for governments across the UK to fulfill their existing commitments on ACP and aims to support health and social care professionals to have early ACP conversations.

To achieve a ‘good’ death, however, it is vitally important that we have honest conversations.

Adrienne Betteley, Specialist Adviser for End of Life Care for Macmillan

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England

Macmillan works closely with a coalition of five other major charities with considerable experience of supporting and understanding the needs of people approaching the end of their lives and their families and carers.

We have been working together to highlight the lack of choice and the variable quality of care available to dying people and their families and carers. In July 2016 the Government published their response to the Independent Review of Choice in End of Life Care [PDF], which sets out a new ‘National Commitment’ based on everyone at the end of life receiving high quality care tailored to their needs and wishes. However, there is still a long way to go to translate the recommendations into tangibly better care for patients and we will be continuing to work closely with other organisations to ensure this vision is implemented.

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Scotland

Macmillan in Scotland contributed to the research on End of Life Care that resulted in the Scottish Government publishing 'The Framework for Action on Palliative and End of Life Care' in December 2015. The Cancer Plan in March 2016 also committed to improving end of life care – and Macmillan will spearhead implementing this work through a combination of Macmillan professionals and workforce training and development programmes.

With the ever increasing number of people both being diagnosed with cancer the pressure on end of life services will continue to grow. Whilst palliative care may have originated with cancer patients the sheer volume in growth of cancer patients means we are a long way from ensuring everyone gets the palliative and end of life care that they and their families deserve.

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Wales / Cymru

Macmillan believes that for people who are no longer curative and are dying from cancer, their ongoing care and treatment needs to be planned holistically. With the support of primary care and through advance care planning (ACP), every effort should be made to ensure that people are able to be cared for and die in the place of their choice and that where possible, avoidable emergency admissions to hospital during this stage of illness are prevented.

The Welsh Government’s End Of Life Care Delivery Plan has resulted in improvement in delivering end of life care within community settings. The refresh of this plan, due later in 2016, will provide an opportunity to continue the positive improvements achieved to date.

Diwedd Oes

Cred Macmillan bod angen cynllunio gofal a thriniaeth barhaus pobl na ellir eu gwella ac sydd yn marw o ganser mewn ffordd holistaidd. Gyda chymorth gofal sylfaenol a thrwy gynllunio gofal ymlaen llaw (ACP), dylid gwneud pob ymdrech i sicrhau bod pobl yn gallu cael gofal a marw lle maent yn dymuno a, lle y bo’n bosibl, bod derbyniadau brys i’r ysbyty y gellir eu hosgoi yn ystod y cyfnod hwn o’r salwch yn cael eu hatal.

Mae Cynllun Darparu Gofal Diwedd Oes Llywodraeth Cymru wedi arwain at welliant yn darparu gofal diwedd oes mewn lleoliadau cymunedol. Bydd diwygiad o’r cynllun hwn, a ddisgwylir yn nes ymlaen yn 2016, yn gyfle i barhau â’r gwelliannau cadarnhaol a wnaed hyd yn hyn.

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Northern Ireland

Cancer remains the most common cause of death in Northern Ireland. We want government, providers and health professionals to work together to help people approaching end of life to receive the care that’s right for them. 

In the recent Assembly election we called on all political parties to promote Advance Care Planning.

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