Discussion
cancer, AD
CANCER, VIRUS
This study is the first of its kind to experimentally examine the difference between a US-style AD, in which the choice between comfort and life-prolonging care is presented neutrally, and the ADRT used in the United Kingdom, where comfort care is framed as refusing treatment. This was combined with a COVID-19 prime, to reflect the effect the global pandemic might have had on end-of-life care choices. At the time the data were collected in September 2020, COVID-19 cases in the United Kingdom were rising, new restrictions were being announced, and the vaccination program was still months away. As a result, the risk of catching the virus and becoming seriously ill from it would have been very salient when participants were completing this task.In all conditions, most of our UK-based participants selected comfort care for their overall preference for care and also in the case of their preferences for specific diagnoses. However, this was significantly influenced by the framing of the form participants filled out. As hypothesized, the UK ADRT frame had a significant effect on participants’ choices: framing comfort as refusing treatment significantly reduced the number of participants choosing comfort care, compared with participants who were given a more neutral choice under the US frame. Interestingly, the COVID-19 prime affected only participants given the UK-style form and only for the first question about the overall preferences for their care: respondents in the UK condition and primed with COVID-19 were more likely to choose life-prolonging care. There was no effect on participants in the US condition. This suggests that the effect is not due to a general mortality salience, as this would have had a similar effect in the US frame. Instead, it could be due to an increased desire to conform to standard care as part of the UK manipulation, as the UK frame explicitly stated that standard care focuses on prolonging life. Interestingly, this interaction effect was not observed for the other 4 specific illnesses. One possible explanation to reconcile these findings may be related to the behavioral immune system theoryFor specific treatments, the effect of the country frame also disappeared. Furthermore, while most participants preferred comfort overall, when faced with the types of treatments that would usually be considered aggressive for the end of life, the majority chose to accept them. As no additional information was provided about these treatments, it might be due to a lack of knowledge about what they entail or the likely outcome. This is very likely, given the nonclinical sample, and reports of similar misconceptions during the height of the pandemic, such as patients asking if they could still walk around while on a ventilator.While the country frame (and to a lesser extent, the COVID-19 prime) had some influence on what people chose to prioritize for their end-of-life care, it did not affect their self-reported likelihood to document their preferences in the near future. In both the UK and US conditions, slightly more than one-third of participants indicated they were likely or very likely to do so. This is a positive finding, as one concern about the framing of the ADRT is that it could deter people from making advance care plans at all. However, self-reported likelihood might not necessarily reflect whether people actually go on to write an AD, and only 3% of participants clicked on the link for more information, which is in line with statistics on UK completion rates.In the exploratory analysis of the additional variables collected, several had a significant influence on the choice between comfort or life-prolonging care. Increases in the age of the participants was linked to an increase in choosing comfort care, which is consistent with previous research on the treatment choices of cancer patients.It is important to note that, although the different framing did influence participants’ choices, the country frame, COVID-19 prime, and the interaction between the two account for only 5% of the variance in their preferences for end-of-life care. This rises to just 9% when factors such as age, gender, and ethnicity are included, which suggests that there are more explanatory variables to be identified in future work.This study has also 2 important limitations that may limit its generalizability. The first is the sample itself, which was not fully representative of the UK population and may therefore limit the generalizability of the findings. The participants were more likely to be younger, female, nonreligious, and more educated compared with the general population. In particular, age had a significant impact on participants’ choices, but with only 5.6% of the total sample aged 60 y or older, it was not possible to observe the effects of the experimental conditions on this subgroup in isolation. Moreover, the overwhelming preference for comfort-oriented care is surprising given most participants (71.2%) were younger than 40 y. Previous work has demonstrated that younger people are more likely to choose life-prolonging care,The second limitation is the design of the form that participants filled out. The order in which the questions were presented was not randomized, which could have influenced the way participants answered them. If participants had reflected on specific illnesses or medical treatments before stating their overall goal of care, it might have changed their preferences. Furthermore, to keep the 2 forms as similar as possible, the final design of the UK-style ADRT was quite different from the typical form template. This is because the form is designed only for those who wish to refuse treatment; there is no option for life-prolonging care. If participants were given the choice to simply fill in the form or not, which would be more reflective of real-life decision making, there could have been a very different outcome. However, this would have made the results from the 2 conditions less useful to compare. Clearly, completing an AD is not the same as choosing comfort care, so it is important to separate these 2 constructs in future studies. The participants were also never explicitly asked if they understood refusal of care to mean they would receive no treatment at all, and instead their choice of life-prolonging care is used as a proxy for this. This needs to be examined in more detail.Even with these limitations, these findings have important implications for public policy with regard to documenting preferences for end-of-life care. The percentage of UK residents with an AD is far lower than many comparable Western countries, and it is likely that this disparity is driven in part by the way the question is frequently asked. Instead of comfort care being framed as an equal choice for treatment, it is instead framed as refusing treatment altogether. Just as patients tend to prefer taking action to doing nothing,