Two-thirds of us worry about end-of-life care, harrowing survey reveals

At one time we used to worry about getting older. Now it seems we worry about what we will do when we are older.

This change of emphasis came out of a King’s College London survey of more than 2,000 people across the UK. Apparently, two-thirds of us are worried about access to palliative and end-of-life care, and four out of 10 think there isn’t enough palliative care to go round.

The survey, commissioned by the Florence Nightingale Faculty of Nursing, Midwifery & Palliative Care at King’s in January, shows that nearly a quarter of people (24%) don’t know much about or haven’t heard of palliative care.

Furthermore, 22% of people from ethnic minority groups say they haven’t heard of palliative care (compared to 4% of white people), and 18% of people from those groups believe palliative care involves giving people medicines to shorten their lives (compared to 5% of white people).

In the context of assisted dying, when someone terminally ill is prescribed life-ending drugs, there’s an urgent need to improve public understanding of palliative care. Worryingly, almost a third of people from ethnic minority groups (30%) said they don’t trust healthcare professionals very much or at all to provide high quality care towards the end of life (compared to 17% of white people).

Professor Katherine Sleeman from King’s calls for more government investment in palliative care: “The fact that 65% of UK adults say they’re worried about access to palliative and end-of-life care should be a wake-up call for current and future governments. This is especially important given the large increase in palliative care need that is projected over the next decade.

“The shocking gap in the public’s understanding of palliative and end-of-life care also needs to be addressed as the assisted dying debate continues to gather pace. It is highly concerning, too, that many people believe that palliative care involves giving patients medicines in order to shorten their lives.”

Dr Sabrina Bajwah, also from King’s, wants special attention to be given to ethnic minorities. We already know that ethnic minority patients are more likely to experience distress at the end of life. It is concerning to note that nearly one-third of respondents from ethnic minority groups lack trust in healthcare professionals’ ability to deliver high-quality end of life care.

“With our population becoming increasingly diverse, it is imperative we promptly address this inequality by enhancing palliative care and end-of-life services to cater to patients’ unique needs and their families.”