A new research report reveals mismatch between Clinical Commissioning Group policies and the reality faced by patients. Patients report doctors being ill-equipped to support them to plan ahead for their future care and treatment.

In this section you can view and download all of our factsheets, research and publications free of charge. To find what you need, click on the categories and topics on the right hand side or type into the search box.
If you can’t find what you need, or have any questions, please feel free to get in touch.
We are committed to providing up-to-date and accurate information, and are proud to have received accreditation from the NHS England Information Standard.
All of our printed information written for the public that meets these requirements carries the Information Standard logo.
Read more about how we produce our information.
A new research report reveals mismatch between Clinical Commissioning Group policies and the reality faced by patients. Patients report doctors being ill-equipped to support them to plan ahead for their future care and treatment.
New research reveals that GPs lack sufficient awareness and understanding of Living Wills, with potentially damaging consequences for patients.
In late 2011/early 2012 Compassion in Dying contacted all Ambulance Trusts in the UK with a Freedom of Information request, which asked questions on their Do Not Attempt Resuscitation (DNAR) policy, end-of-life care registration systems, out-of-hours care and the use of Advance Decisions (formerly known as living wills).
Prompted by callers to the Information Line – who voiced concerns that paramedics might not have access to their Advance Decision – we contacted all Ambulance Trusts in England and Wales to find out what systems they have in place to record patients’ medical treatment preferences in the event that they lose capacity and whether patient preferences are adhered to.
An Analysis of Calls to the Compassion in Dying End-of-Life Rights Information Line was conducted by Loughborough University. This study, which looked at in excess of 200 calls to Compassion in Dying, found that a major barrier to patients exercising choice was doctors’ failure to engage with patients about their Advance Decision and the lack of systems in place to record them.
An Analysis of Calls to the Compassion in Dying End-of-Life Rights Information Line was conducted by Loughborough University. This study, which looked at in excess of 200 calls to Compassion in Dying, found that a major barrier to patients exercising choice was doctors’ failure to engage with patients about their Advance Decision and the lack of systems in place to record them.
We wanted to learn more about whether patient choices at the end of life are respected if set out in an Advance Decision. We conducted a systematic review of research evidence which examined: To what extent are the medical treatment wishes laid out in preference tools respected?
A pilot service in East London was evaluated 2013/2014. Numbers reached, learnings from the project, case studies and how this has informed the roll out to seven Age UKs across England are reported on.
This is a secondary analysis of interviews with patients about their experiences of living with terminal illness, with a view to understanding how they approach decision making at the end of life.
Through our information and outreach services we have supported over 25,000 people to make decisions about their treatment and plan their care. This report shares some of our learning.
New research has revealed that one in five dying patients receive treatment their friends and family say they would not have wanted, with almost half (47%) feeling their loved one had a bad death.
This report reveals that Ambulance Trusts across the UK vary significantly in their policies and practices regarding advance care planning documentation.