What do the public know about palliative care and advance care planning in Northern Ireland ?
Authors: Professor Sonja McIlfatrick, Head of School and Professor of Nursing and Palliative Care, Ulster University and PCRN member and Dr Deborah Muldrew, Research Associate, Ulster University and ECRF Member
Do you ever think about how you would like to be cared for if you became sick? Have you thought about what is important to you, or do you share the common view in Northern Ireland that “it’s almost superstition: if I don’t think about it, it won’t happen”?
As part of a nationwide research study we studied the knowledge and attitudes of people in Northern Ireland regarding:
- Advance care planning (planning for future care)
- Palliative Care (care for people with a life-limiting illness)
In this blog, we’ll look at the findings of this study and think about how we can increase knowledge and change attitudes, which may lead to better outcomes when someone experiences a life-limiting illness.
Why this is important?
Palliative care refers to the care provided to someone with a life-limiting illness, which aims to prevent or relieve suffering for both the person and their family. Access to palliative care is a basic human right however, it is often delivered too late. Previous research suggests the public hold misperceptions about palliative care, for example, it is for end of life care only, or only relevant for people with cancer (1). These misperceptions may influence how and when people access care.
Advance care planning is a process that allows people to discuss, share, and record personal values and preferences regarding future care. Advance care plans can be formal (advance decisions, assigning a power or attorney) or informal (advance statements of what is important to your health and care). It has been suggested that advance care planning should be undertaken early and outside of a medical setting instead of waiting until a health crisis occurs (2,3). However, the reality is that often conversations are happening too late, or not at all.
We know we need to raise awareness and increase the public’s understanding of both palliative care and advance care planning. To tailor the information to the needs of the people in Northern Ireland, first we wanted to understand what they already know and think about these topics.
What we did
We collected data from two difference sources:
- The Northern Ireland Life and Time Survey. This is an annual survey of adults living in Northern Ireland. In 2018, questions were included about palliative care and advance care planning. A total of 1,201 adults completed the survey.
- We spoke to 25 adults who had responded to the Northern Ireland Life and Time Survey. We held 19 interviews and 2 focus groups and asked participants questions about knowledge, understanding, and attitudes to palliative care and advance care planning. We also discussed how we could promote and raise awareness of these topics among the public in a sensitive way.
What we found
The survey showed that participants’ understanding of palliative care was quite low. Only 1 in 5 participants described palliative care accurately. Three myths about palliative care were commonly reported:
Myth 1: Palliative care is only relevant in the last six months of life.
Myth 2: Palliative care does not address psychological issues.
Myth 3: Palliative care does not help people to participate in daily activities.
In the interviews and focus groups, participants explained that their understanding of palliative care came from personal experience. This experience was often “traumatic” and at the end of someone’s life. Despite this, participants accurately thought the goal was a “good death” or “dying comfortably”. Palliative care was perceived as a taboo subject. It should be noted that participants who were female, middle-aged, more educated, or born in Northern Ireland had a greater understanding of palliative care, but we don’t know why these groups had better understanding.
To improve peoples’ understanding of palliative care participants thought that conversations should be woven into TV soap storylines and posters made visible in libraries and GP surgeries.
Participants understanding of advance care planning was also quite low. In the survey, 1 in 3 said they understood what advance care planning is. Popular opinions which were not true included:
Myth 1: Advance care planning is focused on medical care and treatment options.
Myth 2: Advance care planning should only be discussed at the end of life.
Myth 3: Advance care planning is a “last resort” after treatment has failed.
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 had engaged in a conversation about advance care planning. 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. However, they felt it would be hard to change peoples’ attitudes as they were linked to religious and cultural beliefs. To improve peoples’ understanding of advance care planning church groups and school curriculums were suggested as a good place to start conversations.
What this means
Normalising early conversations when people are healthy is important to help manage stress and anxiety if a crisis does occur. We should not wait until a medical crisis to start thinking about and discussing what is important to us regarding our health and care. We also need to change how palliative care is viewed and dispel existing myths held. Actions to raise awareness and encourage early conversations need to be led by the community through public health campaigns (4,5).
Messages need to be:
• Tailored to the needs of different groups
• Using language which is accessible and understood among different groups
• Communicated using channels which meet the needs of the targeted groups
Find out more
To learn more about this research visit: LINK
- Patel P, Lyons L. Examining the Knowledge, Awareness, and Perceptions of Palliative Care in the General Public Over Time: A Scoping Literature Review. Vol. 37, American Journal of Hospice and Palliative Medicine. 2020. p. 481–7.
- Kellehear A. Advance care planning as a public health issue [Internet]. Rogne L, McCune S, editors. Advance Care Planning: Communicating about matters of life and death. New York: Springer; 2013 [cited 2020 Nov 4]. p. 333–45. Available from: https://www.springerpub.com/advance-care-planning-9780826110213.html
- Kellehear A. Compassionate communities: End-of-life care as everyone’s responsibility [Internet]. Vol. 106, QJM. QJM; 2013 [cited 2020 Nov 4]. p. 1071–5. Available from: https://pubmed.ncbi.nlm.nih.gov/24082152/
- McIlfatrick S, Slater P, Bamidele O, Muldrew D, Beck E, Hasson F. ‘ 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. Palliat Med [Internet]. 2021 May 17 [cited 2021 May 18];026921632110158. Available from: http://journals.sagepub.com/doi/10.1177/02692163211015838
- McIlfatrick S, Slater P, Beck E, Bamidele O, McCloskey S, Carr K, et al. Examining public knowledge, attitudes and perceptions towards palliative care: a mixed method sequential study. BMC Palliat Care [Internet]. 2021 [cited 2021 Apr 30];20(1). Available from: https://doi.org/10.1186/s12904-021-00730-5
“This work was supported by HSC R&D Division, Public Health Agency [COM/5459/2018] and the Department of Health, Northern Ireland”.
For further information on this research email Professor Sonja McIlfatrick: Sj.firstname.lastname@example.org