Advance Care Planning Policy for Adults in Northern Ireland

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.”

Notes to editors: 

1. Advance Care Planning (ACP) is an umbrella term covering personal, clinical, legal, and financial planning to prepare for a person’s future care. It is an on-going process of discussion between an individual, those close to them and health care professionals that ensures that people have the opportunity to have timely, realistic and practical discussions about what matters to them and to consider and record their wishes, feelings, beliefs and values, if they wish to do so.  ACP discussions or decisions will be activated at a time in the future whenever the person cannot be directly involved in decision making because of a lack of capacity or where the person is unable to communicate what their wishes are.
2. Advance care planning is important for adults of any age and at any stage in life. 
3. The Advance Care Planning policy will be for adults aged 18 years and over with a main focus on health and social care aspects of advance care planning. An early engagement process is ongoing to inform the development of the policy prior to public consultation later this year.
4. A public health approach to palliative care recognises the role of society and community in enabling and supporting people living with life-limiting conditions, and those important to them, to live well with flexible, holistic and person-centred care. It also seeks to increase awareness, understanding and discussion around palliative care, as well as encourage and support advance care planning.
5. The ‘Where are we now?’ research was undertaken by Ulster University as part of the Northern Ireland Life and Times (NILT) Annual Survey. NILT is a constituent part of ARK (Access, Knowledge, Research) which aims to support policy development and debate in Northern Ireland through providing information and critical analysis. The report can be accessed online.  www.ulster.ac.uk/__data/assets/pdf_file/0012/819678/Where-are-we-now-Examining-public-knowledge-and-attitudes-towards-palliative-care-and-advance-care-planning-in-NI.pdf
6. The research was based on a representative sample of adults from the NI population aged 18 years and over.  A total of 1,201 interviews were conducted as part of Phase 1.  Participants were invited to contribute further to a series of focus groups and one-to one interviews. A total of 25 participants participated in the further qualitative research elements.
7. In July 2020, a sample population of 500 people across Northern Ireland were surveyed by iReach Insights for the All Ireland Institute of Hospice and Palliative Care. The survey provides an insight into the understanding of palliative care, how comfortable adults in NI are with discussing palliative care and how much of an impact the COVID-19 pandemic has had on their thoughts of palliative care. The report can be accessed online.
8. For media enquiries please contact DoH Press Office by email: pressoffice@health-ni.gov.uk. 
9. Follow us on twitter @healthdpt.
10. The Executive Information Service operates an out of hours service For Media Enquiries Only between 1800hrs and 0800hrs Monday to Friday and at weekends and public holidays. The duty press officer can be contacted on 028 9037 8110.

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