What do the public know about palliative care and advance care planning in Northern Ireland?
Palliative care, Advance care planning, Public health, Mixed methods
Public health is an organised activity of society to protect, maintain, and improve the health and wellness of the whole population and to maximise quality of life when health cannot be restored. A public health approach to palliative care has three core principles: (1) population/community based; (2) prevention/promotion focused; and (3) whole systems oriented. The World Health Organisation (WHO) advocate that palliative care should be considered as a public health issue, integrated across all levels within the continuum of care. Despite this recommendation for a public health approach towards palliative care, evidence repeatedly demonstrates that palliative care is often accessed late in the illness course.
What the public know and understand about palliative care may impact on future access to quality care in the event of a serious illness. However, international research suggests that palliative care is poorly understood among the public and misperceptions continue to exist.
Advance care planning enables adults at any stage or health status to understand, identify and share their personal goals, values, and preferences regarding future medical care, formally (for example, advance decisions or assigning a lasting power of attorney) or informally (advance statements regarding what the person considers important to their health and care). Advance care planning helps to ensure the medical care delivered is consistent to the person’s wishes/values and preferences, reduces decision-making burden, and helps families prepare for and cope with bereavement. However, advance care planning research has continually focused on older patients or in the context of a medical crisis, and evidence suggests uptake is low.
There is increasing recognition that advance care planning should engage the public outside of a medical setting. However, research would suggest there are wider societal factors which may limit patient and wider community access to advance care planning and ‘early’ palliative care. Therefore, this need to raise awareness and understanding of palliative care and advance care planning amongst the public, within a public health approach, has been recognised as a key policy priority, internationally, nationally, and regionally.
The research aimed to explore the awareness, knowledge and public views and behaviour in relation to palliative care and advance care planning within Northern Ireland and identify strategies to raise awareness within a public health framework.
What did we do?
A two phase, sequential mixed methods design was utilised, including a cross-sectional survey and qualitative interviews.
In phase one a random representative sample of adults (n=1201, 56% response rate) completed the 2018 annual, cross-sectional attitudinal survey undertaken in Northern Ireland, known as the Northern Ireland Life and Times survey (NILT). The Palliative Care Knowledge Scale (PaCKS), and the European Association of Palliative Care White Paper on advance care planning underpinned the core survey questions. Sociodemographic characteristics were also collected.
Following completion of the survey, respondents were asked if they would like to participate in a second, qualitative phase. Eligible participants (aged 18-80, able to speak and read English, who previously completed the survey, and had not experienced bereavement in the last six months) were invited to take part in a one-off focus group or interview between October 2018 and July 2019. Twenty-five agreed to participate. The data from phase one informed the development of the interview schedule utilised in phase two.
The interview schedule comprised of broad topic areas related to palliative care and advance care planning, which included knowledge; knowledge and information seeking behaviours; perceived accessibility of services, and future strategies for promoting public awareness.
The results from both phases were analysed in parallel, integrated using data matrix and weaving the thread techniques, and presented thematically throughout the results.
Findings indicate a dearth of awareness, lack of knowledge, and misperceptions among the general population regarding palliative care and advance care planning in Northern Ireland. Almost half of survey respondents had some direct experience of palliative care. However, only 1 in 5 had a completely accurate understanding of the term. Variances in understanding were associated with several demographic characteristics. However, reasons why these are influencers are unknown. Understanding is derived from limited ad hoc personal experiences focusing on the end of life and not the holistic palliative care journey. Palliative care is perceived as a “taboo” subject. Therefore, it was recommended to weave conversations into everyday platforms, such as TV soap storylines. Less than 1 in 3 respondents recognised the term “advance care planning”, while only 7% had engaged in a conversation. Friends/family, the General Practitioner or a member of the clergy were most likely approached to discuss the topic, and Google was a key source of information.
Participants understanding of advance care planning was also quite low; 1 in 3 said they understood what advance care planning is. Common myths about advance care planning included: (1) it is focused only on medical care and treatment options; (2) it should only be discussed at the end of life; and (3) it is a “last resort” when treatment fails. Advance care planning was recognised as important but not something which was considered part of a normal conversation. Participants felt they were in good health and did not want to talk about future care. Only 7% of participants engaged in a conversation about advance care planning.
Whilst the public reported a willingness to engage in such conversations, societal restrictions driven by the prevailing myths impinged on this occurring. For example, advance care planning was not seen as a normal topic of discussion prior to a medical crisis. Despite this, palliative care and advance care planning were recognised as important and a range of strategies to enhance understanding and engagement were offered including education and publicity.
By waiting until a medical emergency arises, it hinders normalisation of the early conversations advocated in public health policy. Essential conversations can start earlier and ensure appropriate care reaches everyone who would benefit if we:
(1) integrate palliative care earlier across disease types and care settings, and
(2) change public attitudes so advance care planning is seen as a “normal” conversation to have irrespective of health status.
A community action approach to enhance understanding and engagement was supported. However, a ‘one size fits all’ approach will not work; rather bespoke targeting is required with educational and media messaging aligned. There is a need for public health campaigns to recognise the disparity in what palliative care is seen to offer (end of life care), and move forward by raising awareness, removing misconceptions, and increasing openness to holistic palliative care.
A consistent message from a trustworthy source, inclusive of the voice of the patient, carer, and healthcare professional, and offering both general and tailored information to the needs of specific groups is advocated.
June 2018 – March 2021
Principal Investigator: Professor Sonja McIlfatrick, Head of School and Professor of Nursing and Palliative Care, Ulster University
Dr Felicity Hasson, Senior Lecturer, Ulster University
Dr Paul Slater, Statistician/Lecturer, Ulster University
Dr Esther Beck, Lecturer, Ulster University
Dr Lisa Hanna-Trainor Research Associate, Ulster University
Dr Deborah Muldrew Research Associate, Ulster University
“This work was supported by HSC R&D Division, Public Health Agency [COM/5459/2018] and the Department of Health, Northern Ireland.”
Peer Reviewed Papers:
BMC Palliative Care publication [open access]: McIlfatrick, S., Slater, P., Beck, E., Bamidele, O., McCloskey, S., Carr, K., Muldrew, D., Hanna-Trainor, L., & Hasson, F. (2021). Examining public knowledge, attitudes, and perceptions towards palliative care: A mixed methods, sequential study. BMC Palliative Care, 20 (44). Available at: https://bmcpalliatcare.biomedcentral.com/track/pdf/10.1186/s12904-021-00730-5.pdf [accessed June 2021]
Palliative Medicine publication: McIlfatrick, S., Slater, P., Beck, E., Bamidele, O., Muldrew, D., & Hasson, F. (2021). “It’s almost superstition: if I don’t think about it, it won’t happen”. PUBLIC KNOWLEDGE AND ATTITUDES TOWARDS ADVANCE CARE PLANNING: A SEQUENTIAL MIXED METHODS STUDY. Palliative Medicine. Available at https://doi.org/10.1177/02692163211015838 [accessed June 2021]
Report published (February 2021): Where Are We Now? – Examining public knowledge and attitudes towards palliative care and advance care planning in Northern Ireland
Press release (March 2021): Advance Care Planning Policy for Adults in Northern Ireland