The charity Compassion in Dying has published a comprehensive and powerful report based on analysis of calls and emails received on its information line, together with a YouGov poll, outlining how talking about end of life decision-making in the United Kingdom is not currently working. Entitled Rethinking the UK’s approach to dying: lessons from an end-of-life helpline, the report finds that:
1.Talking about dying is not enough to ensure people’s wishes are followed
2.Opportunities to help people consider, discuss and record their preferences are missed
3.The healthcare system can be dismissive of people’s attempts to make decisions:
a. Advance decisions to refuse treatment are not always respected
b. Health attorneys are not always listened to
4. People cannot make informed decisions without realistic and straightforward information
The report recommends that government, health and voluntary and community organisations collaborate to:
1. Introduce an advance care planning conversation guarantee, initially through the NHS health check
2. Deliver a public health campaign on advance care planning
3. Create more opportunities for people to record what matters to them at the end of their lives
4. Introduce a duty of openness and transparency in end-of-life conversations to enable properly informed consent around treatment decisions
5. Develop mandatory training for healthcare professionals on end-of-life decision making under mental capacity legislation
5. Develop mandatory training for healthcare professionals to recognise when a person is approaching the end of their life and to support a transition to comfort care
Although not a substitute for the steps recommended – all of which I would agree with – some may find this video on advance care planning of assistance (based on the law in England & Wales).
One point that it is important to understand is that the report is based upon the law as it currently stands. Many will be aware of political initiatives to change the law to make the provision of assistance with dying legal: for those who want to think this through, this video may be of assistance. Without taking a stance for or against legalisation, one point that I would highlight as requiring consideration in any moves towards legalising assisted dying is as to the impact that it would have on conversations of the nature that the report highlights as of being so necessary.