The booklet is designed for people caring for someone who is in the last stages of life, so that they know what to expect in the very last days and hours of a person’s life, and what they can do to help.
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 make the last hours and days of someone’s life less distressing for all concerned, including friends, family members and carers.
“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,” explained Claire Henry, chief executive of the National Council for Palliative Care.
The guide has been developed with input from 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 inconsistent provision of information about the dying process was one of the issued raised by members of the public who contributed to the independent review of the Liverpool Care Pathway.
Baroness Neuberger, who chaired the independent review, commented: “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 Ros Taylor, national director for hospice care at Hospice UK, said: “Dying is a certainty for all of us and yet too many people know little about what it actually involves, whether about the physical changes that take place or where to get the right support.
“As we have witnessed in the past, gaps or inconsistencies in knowledge about the dying process can adversely affect the experience of the final days of life, wherever that takes place. By explaining more about the dying process and how families can be involved in care, this resource will help to improve the confidence of people whose loved ones are dying.”
Copies of ‘What to expect when someone important to you is dying’ are available free to download from the National Council for Palliative Care website. Printed copies are available from the National Council for Palliative Care shop priced £2.50 (£1.25 for NCPC subscribers). Discounts are also available for bulk orders.