Carers providing end-of-life care need much more support, new research has found

“This report shows that there is work to be done in end-of-life-care, not only to ensure individuals are making their wishes known, but also in better supporting carers

There are 6.5 million carers in the UK[i] – people who provide unpaid care for an ill or disabled family member or friend. A report out today has found that much more could be done to support those carers who provide end-of-life care, to both improve the patients’ end-of-life experience, and the support the often first-time carer to do a difficult job.

The report, launched by Compassion in Dying Director, Danielle Hamm, at today’s Narrative of Co-ordinated Care for people towards the End of Life conference, makes recommendations such as: creating a liaison role to coordinate care, supporting advance care planning so that carers know they are respecting the patient’s wishes and ensuring carers are given the right information and training so they can make informed choices and provide the best possible care.


Danielle Hamm, Director of Compassion in Dying said:


“This report shows that there is work to be done in end-of-life-care, not only to ensure individuals are making their wishes known, but also in better supporting carers.

“The recommendation for a new role to be created to coordinate patient care is particularly important.  This liaison role would ensure that carers don’t end up becoming informal coordinators of patients’ care. The role would be undertaken by someone with a detailed understanding of the health and care system and end-of-life rights and would remove the pressure of carers having to navigate a process that they have no familiarity with, instead enabling them to spend more meaningful time with the dying person.

“Getting support for carers right will increase the chances of the dying person experiencing a ‘good death’. Getting it wrong can worsen the experience of death for the patient and leave the carer in emotional distress as a result of the misplaced perception that they have failed in their role.”




Notes to editors:

For media enquiries please call Jo Cartwright on 02074797737 or email

Compassion in Dying is a national charity (no. 1120203) that supports people at the end of life to have what they consider to be a good death by providing information and support around their rights and choices. We are the leading provider of free Advance Decisions in the UK and we also conduct and review research into rights and choices in end-of-life care.

Compassion in Dying believes that people should, as far as possible, have what they consider to be a good death by ensuring their wishes are respected at the end of their life. An important part of this is making sure people know what their end-of-life rights are and that healthcare professionals must act on patients’ wishes if they are valid and applicable.

Compassion in Dying was set up by and works in partnership with the campaigning organisation Dignity in Dying, which campaigns for a change in the law to allow terminally ill, mentally competent adults to have the choice of an assisted death.  Compassion in Dying is not involved in this campaign but does share its vision of patient choice at the end of life.

For more information on Compassion in Dying visit

The End-of-Life Rights Information Line
The End-of-Life Rights Information Line is available on freephone 0800 999 2434, or by emailing or writing to Information Line, Compassion in Dying, 181 Oxford Street, London W1D 2JT.  The phone-line is open between 11am and 3pm Monday to Friday. 

Advance Decisions
An Advance Decision is a document that allows individuals to set out their wishes and preferences for medical treatment in advance, in the event that they become unable to communicate with their health team (for example, if they fall into a coma or develop dementia).  Advance Decisions were given statutory force under the Mental Capacity Act, 2005 (in October 2007) meaning the refusal of treatment is legally binding.  The Compassion in Dying Advance Decision is fully compliant with the Mental Capacity Act.
Free Advance Decisions are available by calling the Information Line or to download from 

Lasting Powers of Attorney
A Lasting Power of Attorney is a legal document. It allows you to appoint someone that you trust as an ‘attorney’ to make decisions on your behalf.
There are two types of LPA: property and financial affairs and health and personal welfare.  A Lasting Power of Attorney cannot be used until it is registered with the Office of the Public Guardian.
Attorneys for health and personal welfare can make decisions for you when you lack the mental capacity to do so.