Over two-thirds of people across the UK are worried about access to palliative and end-of-life care, and 41 per cent think there is too little NHS resources allocated to patients at the end of their lives, a survey has found.
The survey commissioned by researchers at King’s College London, ahead of a parliamentary debate on assisted dying, revealed a ‘shocking gap’ in the public’s understanding of palliative and end-of-life care, with nearly a quarter of adults in the UK stating they have not heard of or do not know what palliative care is.
The researchers say levels of death literacy and understanding of palliative care amongst the public urgently need to be addressed, particularly as the assisted dying debate gathers pace.
Over 2,000 people across the UK took part in the survey in January 2024, which was carried out by YouGov. Sixty-five per cent of participants were worried about access to palliative and end-of-life care, and twenty-four per cent said they do not know much about or have not heard of palliative care.
The researchers found significant disparities between White and ethnic groups, with 22 per cent of people from ethnic minority groups saying they have not heard of palliative care compared to four per cent of White people.
Nearly one-fifth (18 per cent) of those surveyed from ethnic minority groups believe that palliative care involves giving people medicines in order to shorten their lives, compared to five per cent of White people.
There also appeared to be a mistrust of care offered by healthcare professionals amongst ethnic minority groups, with almost one in three (30 per cent) stating they do not trust healthcare professionals very much or at all to provide high-quality care towards the end of life. This was compared to 17 per cent of White people.
Professor Katherine Sleeman, from the Florence Nightingale Faculty of Nursing, Midwifery & Palliative Care at King’s College London, said: ‘The fact that 65% of UK adults say they are 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 projected over the next decade.’
She added: ‘The shocking gap in the public’s understanding of palliative and end-of-life care also needs to be addressed. It is highly concerning that many people believe that palliative care involves giving patients medicines in order to shorten their lives.
‘Over 100,000 people in the UK die each year needing palliative care but do not receive it, and inequalities in accessing care, including among people from ethnic minority groups, are common. It is essential that we address the disparities that create additional barriers for people to access the care that they need. This includes an urgent need to improve death literacy among the public.’
The findings come after the recent introduction of the Government’s all-age palliative and end-of-life care dashboard, commissioned by NHS England. The dashboard brings together relevant local data in one place to help plan and track improvements in health disparities.
