A total of 2606 respondents completed the NILT Survey over the two time points. Key demographic characteristics were collected from all respondents (see Table 1). There was variation across the characteristics which is representative of a widespread sample. The sample was distributed relatively equally across age banding. At both times 1 and 2, the majority of the sample, around two thirds, indicated that they were from an urban area, with the largest percentages stating they were from a ‘town’ at both times 1 and 2. Over half of the sample was female at time 1 (57.4%) and over half the sample was male at time 2 (50.8%). At both times 1 and 2, over half of the sample stated that they were ‘married’. Educational qualifications at time 1 were spread across categories but at time 2 over half (51.5%) of respondents indicated that they were educated to degree level or above. At time 1, 27.1% of the sample indicated that they had no qualifications, a much smaller percentage had no qualifications at time 2 (5.9%). The highest percentages of respondents at both times 1 and 2 indicated that they were from a protestant religious background.

Limited knowledge and poor engagement

Overall, knowledge and awareness of ACP remained limited across both time points, with only around 28% of the sample having heard of ACP at both timepoints (see Table 2). A total of 2.2% (n = 23) of respondents were unsure as whether they had heard of ‘Advance care planning’. Moreover, levels of actual engagement with ACP were also low at 7% (n = 66) of the sample at timepoint 1, and a decrease noted at timepoint 2 to just 5% (n = 60). Significantly, there was a reduction in those respondents who reported having been offered the opportunity to discuss ACP between 2018 and 2022 (7% and 5%, respectively), with the highest proportion reporting these conversations took place with family and friends (3.1% and 2.9%). Findings show that a quarter of the respondents wished to learn more regarding ACP in 2018. This figure increased to a third in the 2022 sample as illustrated in Fig. 1. Please note that in Table 2, responses from respondents who answered ‘yes’ to the question ‘has anyone offered you the opportunity to talk about advance care planning, and your goals and preferences for future medical treatment and care?’ are shown for the questions on discussions with health professionals.

Table 2 Knowledge and engagement with advance care planningFig. 1

Level of interest in learning more about ACP

Attitudes to advance care planning

Overall, the data indicates a myriad of attitudes towards ACP, representative of the complexity of the process. As depicted in Table 3, almost half (47.1%) of respondents who completed the 2022 NILT felt they were in good health and thus reported a lack of onus to engage. This is a reduction from the 2018 data which reported 65.5% of respondents believing this. There was congruence between the timepoints in relation to the statement ‘it would comfort me to know I have left guidance about my wishes for my family’ with 83.8% of respondents agreeing compared with 82.2% in 2018. Over a quarter expressed concerns that once ACP discussions had taken place, they were unable to change their minds (27.5%), with 25.9% concerned their wishes may not be respected. Over a fifth of the sample (20.5%) believed engaging in the process of ACP would potentially lead to a premature cessation of treatment. Interestingly, despite such reservations, almost three quarters of respondents felt that discussing their wishes would give them a sense of control (73.3%). Statistically significant differences in responding were recorded across the two timepoints (see Table 3).

Table 3 Attitudes to advance care planningStatement: ‘I am in good health and do not want to think about preparing an advance care plan’

The significant predictors for time 1 were age (β = 0.096), as age increased scores also increased, indicating lower levels of agreement with the statement. At time 2 the significant predictors were age (β = 0.264), gender (β = 0.111), and religion (Catholic β = −0.135; Protestant β = −0.085). Scores increased as age of the respondents increased, also indicating lower levels of agreement with the statement. Likewise, higher scores were associated with being female and having no religious beliefs, indicating lower levels of agreement with the statement.

Statement: ‘It would comfort me to know I have left guidance about my wishes for my family’

At time 1 statistically significant differences were noted on education between those individuals with a degree compared to ‘diploma and equivalent’ qualifications (β = −0.087) indicating higher levels of agreement with the statement. At time 2, gender β = −0.132, religion β = 0.092, Urban/Rural β = −0.067. Scores were higher for men than women, were from a protestant background when compared to no religious beliefs, and rural settings. This indicated higher levels of disagreement with this statement in these groups.

Statement: ‘I would worry I could not change my mind’

At time 1 statistically significant differences were noted on urban/rural β = −0.184 where higher scores were noted among rural respondents, indicating a higher level of disagreement with this statement. At time 2, the significant predictor was ‘qualification’ with statistically significant higher scores noted with higher qualifications (‘diploma or equivalent’ level β =−0.113; GCSE A–C β =−0.10; GCSE D-G β =−0.079; no qualification β =−0.143), indicating that more educationally qualified respondents tended to disagree more with this statement.

Statement: ‘I trust my family to make the right decisions for me’

At time 1 statistically significant differences were noted on religious background where catholic (β =−0.240) and protestants (β =−0.256) agreed with this statement more than no religious beliefs. This is repeated at time 2 Catholic (β =−0.138) and Protestants (β =−0.089) and education, where respondents with education levels below GCSE agreed with the statement more.

Statement: ‘I cannot change what will happen in the future and so there is no point in planning’

Only education had a statistically significant impact on scoring at time 1, where lower education qualifications at ‘A’ level and lower were associated with lower scores (‘A’ level β =−0.147; GCSE A–C β =−0.162; GCSE D-G β =−0.130; no qualification β =−0.223). This indicates that lower education qualifications had greater levels of agreement with the statement. At time 2 similar scores were noted with education (GCSE A–C β =−−0.069; GCSE D-G β =−0.114; no qualification = β−0.159) and religious beliefs (Protestant (β = −0.77 compared to no religious beliefs) indicating greater levels of agreement with the statement.

Statement: ‘It is difficult to know if my wishes will be respected’

At time 1 statistically significant differences were noted on religious background where protestants (β = 0.167) agreed with this statement more than no religious beliefs; and gender where women had higher scores (β = 0.116) on the statement, indicating a greater sense of disagreement with the statement. Urban respondents had lower scores compared to rural respondents (β = −0.108), agreeing with this statement more.

At time 2, the age of respondent had a significant effect on scoring, whereas agree increased scores also increased—indicating disagreement with the statement. Qualification also had an impact on scoring, whereas educational qualifications decreased, and this was associated with higher levels of agreement with the statement (‘diploma or equivalence’ level β = −0.092; GCSE D–G β = −0.100; no qualification β =−0.097).

Statement: ‘I worry that if I make plans for my future care and treatment, doctors would stop treatment too soon’

Urban respondents had lower scores compared to rural respondents (β = −0.174), indicating greater agreement with the statement. At time 2, statistically significant differences were noted on religious background where Catholics (β =−0.101) agreed with this statement more than no religious beliefs. Education had a statistically significant impact on scoring at time 2 where lower education qualifications at ‘diploma or equivalent’ and lower were associated with lower scores (‘diploma or equivalent’ level β =−0.098; GCSE A–C β =−0.095; GCSE D–G β =−0.065; no qualification β =−0.154). Respondents with lower qualifications reported higher agreement with the statement.

Statement: ‘Discussing my wishes would give me a sense of control’

At time 1, gender had an impact on scoring (β = −0.119) where women had lower scores, indicating greater levels of agreement with the statement. This pattern was repeated at time 2: Gender (β = −0.125). Additionally, at time 2, religious beliefs had a significant impact on scoring, where Protestant had a higher level of disagreement with the statements compared to no religious beliefs (β = 0.113).