Lack of public awareness in Northern Ireland means people are missing out on the palliative care they need

by Joan McEwan
Head of Policy & Public Affairs for Northern Ireland

joan-mcewanHow much do you know about palliative care? If you work in healthcare, or have a close relative or friend who’s used a palliative care service, the chances are you know a fair amount about the subject, and the different services available.

But recent research from the Northern Ireland Palliative Care Research Forum and Northern Ireland Patient and Client Council found that almost a fifth of people surveyed had no understanding of what palliative care is.

Ageing population

That’s a problem when Northern Ireland has an ageing population, with more and more people likely to need care and support at the end of their lives. Lack of awareness about palliative care might mean that those who need it most are not accessing the services that are available.

The ‘Awareness and public perceptions of palliative care’ research, led by Dr Sonja McIlfatrick from University of Ulster and the All Ireland Institute of Hospice and Palliative Care and co-authored by Dr Noleen McCorry and Lesley Rutherford from the Marie Curie Hospice Belfast, among others, is one of the largest recent studies of its kind.

It was based on 600 responses to a survey of people aged over 17 in Northern Ireland. Researchers also conducted telephone interviews with 50 members of the public who had responded to the initial survey.

Uncomfortable topic

A UK-wide ComRes poll conducted earlier this year on behalf of Marie Curie supports the research findings. Half of those surveyed in Northern Ireland said they wouldn’t know where to turn for practical support if someone close to them was terminally ill. Fifty-two per cent said they felt uncomfortable talking about death and dying.

While the statistics reflect a reticence to discuss the end of life, they also highlight public support for more open discussion with more than two thirds (68%) of those polled in Northern Ireland saying they thought death and dying should be discussed more.

Open discussion

So what do these pieces of research tell us we need to do to address this gap in public awareness?

  • Dispel myths and taboos around death and dying in Northern Ireland, which can be a major barrier to educating the public on available services.

  • Encourage open and honest discussion about death and dying across Northern Ireland. Open discussion also helps to identify patient needs and design services which meet them.

  • Explore media initiatives to raise awareness and promote direct contact between community groups, such as schools, patients and providers.

Increasing awareness of palliative care and encouraging open discussion can help focus on planning for a good death, a better end of life experience in the patient’s place of choice and can help reduce the volume of unwanted hospital admissions at end of life.

Read the studies on Public awareness and attitudes toward palliative care in Northern Ireland and Exploring public awareness and perceptions of palliative care: A qualitative study.

View the results of the ComRes poll on perceptions of death.

What is palliative care? Five key facts

  • Palliative care helps all those with advanced, progressive, incurable illness to live as well as possible until they die.

  • It includes management of pain and other symptoms and provision of psychological, emotional, social, spiritual and practical support.

  • A personal care plan is an important part of palliative care and people have the right to determine where they wish to receive care and where they wish to die.

  • Palliative care is about supporting everyone involved in a person’s life, such as family, friends and carers.

  • Support can be provided as and when required over a long period of time, or more intensively as someone approaches the last weeks, days and hours of their lives.