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.
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?
In order to improve end-of-life care it is crucial to understand what patients and carers want from care providers. Secondary analyses of qualitative interviews with people caring for a dying relative were conducted to examine what co-ordinated, person-centred care at the end of life looks like, with an emphasis on the carer’s perspective.
A report which examines whether patients had record, or made known, their wishes recorded and if this impacted on whether they died well or badly.
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.
In 2011, Compassion in Dying conducted a poll with YouGov on knowledge of end of life rights and choices. This poll found that 60% would want comfort care only if they were dying with no prospect of recovery in the last days and weeks of life, however only 3% had an Advance Decision which could state this. 53% wrongly believed that they had a legal right to make these kinds of decisions on behalf of their next of kin.
A poll commissioned by Compassion in Dying examining how people want to be treated at the end of life, and looking at people’s knowledge of their end-of-life rights and choices.
Most people have some form of opinion about how they would like to be treated at the end of their lives, regardless of their identity or background. For LGBT people in particular, your identity might have an impact on the treatment and care you would like to receive.