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High levels of ‘death illiteracy’ in Northern Ireland could be causing harm, experts warn

Lack of understanding of how to access end of life and bereavement support could be causing major harm to people across Northern Ireland, according to experts.

A new Northern Ireland report published today (4 April), by Marie Curie and researchers at Queen’s University Belfast, reveals that close to a third (30 per cent) of people in Northern Ireland don’t know where to find information to help them plan their end of life wishes and nearly a quarter (24 per cent) wouldn’t know where to find bereavement support if they needed it. 

Of particular concern, one in five people in Northern Ireland are unaware of the common terms that make up core parts of the care and support that people will need when living with terminal illnesses, such as ‘end of life’, ‘palliative’ and ‘hospice care’. 

The stark findings come as experts predict a 30 per cent increase in care needs among people with terminal and life-limiting conditions in Northern Ireland by 2040. 

Dr Lisa Graham-Wisener, Lecturer at Queen’s University Belfast, said: “Our research shows that there is an urgent need to strengthen death literacy within communities in Northern Ireland, so that people are able to navigate what can be a complex and difficult to understand system around death, dying and grieving.

“Informal carers provide most of the care for individuals living in the community with a terminal or life-limiting condition, but they need more support. There is an opportunity for us to empower entire communities in Northern Ireland with the practical knowledge and skills to care for one another towards the end of life. Alongside calling for a new palliative care strategy, this report includes a number of vital recommendations towards improving death literacy and subsequently the end of life experience of people in Northern Ireland.”


Joan McEwan, Head of Policy at Marie Curie Northern Ireland, said: “More and more people are going to be impacted by terminal illnesses in Northern Ireland in the months and years ahead, but far too many are unprepared for the end of life and don’t know where or when they can access support when they need it. This death illiteracy among such large sections of the population is deeply worrying.

“Receiving a terminal illness diagnosis can be devastating and not knowing how to access the help you need can make this difficult time much worse. It may mean barriers to accessing care for the patient, less support for their loved ones and complex experiences of grief and mental ill-health during bereavement. Patients and carers shouldn’t be left alone to scramble around researching what care is available to them at a time when they’re under extreme stress. They need to know what support is available and its incumbent on those who provide it to inform them in an easy-to-understand way.    

“We need to send a clear message today that time is running out to tackle Northern Ireland’s death literacy problem. We urgently need a new palliative care strategy with measures to raise awareness and understanding of end of life care and bereavement support across society, so that patients and those close to them have the best chance of receiving the care and support they need.”

Dr Laurence Dorman, GP and Chair of the Royal College of GPs Northern Ireland, said: “The hallmark of a compassionate society is how it cares for those in their last phase of life. Understanding how and when to implement good palliative care rather than pursuing aggressive and futile treatments are vital if we wish to achieve a ‘good death’ for our loved ones.

"How to navigate the health care system when approaching the end of a disease journey can help empower patients and families and ensure they receive best care by accessing all available supports, not only from our wider HSC but from the community services where they live. The findings of this report that NI has low levels of understanding about end-of-life care, while concerning, are not surprising. Building on from the DoH Advance Care Planning framework, it is vital we, as a society, have important and realistic conversations about what our wishes are in the final days of our lives.”

The survey was carried out by the School of Psychology at Queen’s University Belfast, Marie Curie and the Marie Curie Research Centre at Cardiff University, including responses from more than 500 people from across Northern Ireland.



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