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The Department of Health is developing an Advance Care Planning policy for adults in Northern Ireland.

A key aim of the policy will be to encourage people to think about what matters to them and if they became unwell, to consider their wishes, feelings, beliefs and values to help them to plan ahead for their future. This is part of a programme of work supported by the Department to develop and implement a public health approach to palliative care.

A wide-ranging early stakeholder engagement process is underway to inform the development of the Advance Care Planning policy. Welcoming this process, the Health Minister Robin Swann said: “It is hugely important that people have control over their care.  A critical part of this is thinking about the things that matter to us and having conversations with those important to us about our wishes, feelings, beliefs and values and preferences for our future care.

“This early stakeholder engagement will help raise awareness of the importance of advance care planning for all of us as well as providing an opportunity to contribute to the policy development process.  I would encourage people to get involved and share their views as the policy development progresses.”

The development of the Advance Care Planning policy has been informed by a commissioned research report from Ulster University “Where are we now?” which has examined public knowledge and attitudes towards palliative care and advance care planning in Northern Ireland.

The research, which was partly funded by the Department of Health and led by Professor Sonja McIlfatrick, Head of School and Professor of Nursing and Palliative Care, Ulster University, was undertaken in 2018/19 as part of the annual ‘Life and Times’ survey.  The report found that understanding of palliative care and advance care planning in Northern Ireland is low. When asked about their knowledge of palliative care, just over a fifth of participants (22.6%) fully understood it.  A total of 28.5% of respondents had heard of the term advance care planning but only 7% had ever engaged in a conversation about it.  Despite this, four fifths of respondents (82.2%) felt that it would be comforting to know that they had left guidance about their wishes for their family.

Of those who participated in interviews and focus groups, almost half of those interviewed were unaware of advance care planning, with a perception that such conversations were not necessary unless prompted by a health scare or diagnosis of a life limiting condition.

Lead researcher Professor Sonja McIlfatrick commented: “With people living longer and often with progressive illness we all have an important role to play in both educating and empowering people to take control of their future health care. We’re starting to see growing awareness of the benefits that palliative care and advance care planning can provide, however they are not well understood by the public. Greater efforts are needed to promote advance care planning and reduce any misconceptions.”

A separate survey in July 2020 was commissioned by the All Ireland Institute of Hospice and Palliative Care (AIIHPC) and undertaken by iReach Insights to examine public understanding of palliative care in the context of COVID-19.  It found that almost 2/3rds (65%) of adults in Northern Ireland agreed that palliative care could help them or a loved one, whilst 64% reported that they had been thinking more about death and dying than before, due to the COVID-19 pandemic, with the same number stating that the pandemic had increased the importance of discussing palliative care if they, or someone important to them had a life-limiting illness.

Karen Charnley, Director of the All Ireland Institute of Hospice and Palliative Care said: “The survey also showed that almost three out of four people (73%) in Northern Ireland would like to be supported to discuss and write down their wishes and preferences for care at the end of life. Opportunities for people to have these ongoing discussions in a sensitive, caring and supportive way, with a skilled professional, are to be welcomed.”

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