New guide to help prepare people on what to expect when someone they know is dying

26 March 2015
A new guide which prepares people on what to expect when someone is dying has today been published by the National Council for Palliative Care. ‘What to expect when someone important to you is dying’ aims to demystify the dying process so that people better understand the changes that can happen to their loved ones in the last days of life.

Shaped by people who have experienced the death of someone they were close to, and with support from NHS England, Marie Curie, Sue Ryder and Hospice UK, the guide is intended to make the last hours and days of someone’s life less distressing for all concerned, including friends, family members and carers. 

As well as explaining the physical changes that someone may go through when they are dying and what can be done to make them more comfortable, the guide sets out the kind of care a dying person can expect to receive. It also details the support those close to the person who is dying should be able to rely on and where to turn to for help if there are concerns about the end of life care received. 

The guide is intended to help address serious concerns raised by friends, family members and carers of dying people as well as health and social care professionals about the current inconsistent provision of information about the dying process. This was an issue that was particularly raised by members of the public who contributed to the independent review of the Liverpool Care Pathway, chaired by Baroness Neuberger, which reported in July 2013.

Commenting today Claire Henry, Chief Executive of the National Council for Palliative Care said:

For most of us seeing someone we care about enter the last stages of life is likely to be one of the most difficult and distressing periods we will ever face. This distress is likely to be made even worse if we don’t know what to expect or how we can help. We only have one chance to get it right when people are dying, which is why this new guide is so important.” 

Speaking today Baroness Neuberger who chaired the independent review into the Liverpool Care Pathway said:

"All of us stand to benefit by talking more openly about end of life issues and understanding the realities of dying and the care and support that should be in place. I am therefore absolutely delighted that this important new guide has been published, and by setting out what to expect and their rights I believe it will prove invaluable to the public. It should also be required reading for health and care professionals who can make such a difference by communicating sensitively and effectively about the dying process and the options that are available."

Dr Bee Wee, National Clinical Director for End of Life Care at NHS England added:

Few of us know what to expect when someone we care about is dying, which is why this new guide is so important and so welcome. By demystifying the dying process and setting out the type of care and support that should be available, this guide provides an invaluable service.”

Further information

  1. For all media enquiries please contact Joe Levenson, Director of Communications at the National Council for Palliative Care on 020 7697 1520 or 07795 158003.
  2. The National Council for Palliative Care is the umbrella charity for all those involved in palliative, end of life and hospice care in England, Wales and Northern Ireland. It also leads the Dying Matters Coalition which aims to raise public awareness about the importance of talking more openly about dying, death and bereavement and of making end of life wishes known. 
  3. Copies of ‘What to expect when someone important to you is dying’ are available free to download from the publications section of the website. Printed copies are available from the National Council for Palliative Care priced £2.50 (£1.25 for NCPC subscribers). Discounts are also available for bulk orders. To purchase copies visit the NCPC shop or call 020 7697 1520.
  4. The development of the guide was supported by NHS England and funded by the Health and Care Voluntary Sector Strategic Partners Programme, run jointly by the Department of Health, NHS England and Public Health England.

Share your story

A central part of NCPC's work is listening to what people with personal experience of palliative and end of life care have to say. Please help us by sharing your story.

Share your story