Attitudes and experiences of the public around emergency care treatment planning

Introduction

The development of ReSPECT involved a public consultation but beyond that, there is little information on public perceptions of emergency care treatment planning in the UK.46 There is some literature on the attitudes and experiences of patients and their families regarding DNACPR decision-making.10,47 A YouGov survey of the public commissioned by Compassion in Dying in 2020 found that most people did not understand why a DNACPR decision is made, or what treatment and care will be given if a doctor decides they are ‘not for CPR’.48 Attitudes to ACP, which may include emergency care treatment preferences, have been investigated although, as with DNACPR studies, they have tended to focus on patients rather than the general public.49–51 A study of public attitudes to ACP in Northern Ireland found that ACP was recognised as important despite limited awareness, lack of knowledge and misperceptions.52

To situate our qualitative evaluation of ReSPECT in primary care in the wider public context we carried out focus groups and a national survey to answer the research question: What does the wider public think about the concept and use of ECTPs? Additionally, we sought to interview faith leaders to explore how faith perspectives might influence public attitudes to ReSPECT.

Focus groups with members of the public and interviews with faith leaders

Methods

Recruitment

We sought expressions of interest for focus group participation from members of the public with an interest in health through local Health Watch, community and patient organisations and patient groups linked to our participating general practices in each of our three study areas.53 We asked our PPI advisory group for suggestions of relevant networks to approach and carried out desktop research to identify local patient and carer organisations in each area, including those representing minority groups. We provided a poster about the study, an invitation e-mail and brief information leaflet. Most expressions of interest came from advertising through local Health Watch organisations. Potential participants contacted the study team directly and were provided with further information and offered a range of dates for planned focus groups. If they agreed to participate, they were given details of how to join their focus group. Online participants had unique links to a Zoom™ (Zoom Video Communications, San Jose, CA, USA) meeting. One participant unable to attend a focus group was interviewed separately. Prior to data collection, participants were sent a copy of the ReSPECT form and a consent form. We obtained written consent at the start of the in-person group. Online, we went through the consent form with each participant and recorded their consent.

We advertised the study to faith leaders through community faith groups, local councils, university chaplaincy and NHS trust chaplaincy services in our three study areas and followed up expressions of interest as above.

Data collection

We developed topic guides with input from our lay advisory group. Focus groups were facilitated by researchers JH, SR or CM. Online and face-to-face focus groups and the individual interview followed the same process. After introducing the purpose and format of the discussion, and the ReSPECT process, facilitators used a topic guide to guide the discussion (see Report Supplementary Material 5). They prompted participants to consider potential benefits and disadvantages of emergency care treatment planning for patients, relatives, the health service and wider public, and consider aspects of implementation, including how and when ReSPECT conversations should be initiated, any potential challenges in using the forms, and if, and when ReSPECT forms should be reviewed.

Interviews with faith leaders followed the topic guide for the focus groups with additional prompts on how the values embedded in ReSPECT interact with key values in their faith.

Participants received a shopping voucher as a thank you for participation. We ran four focus groups; one of which was in person. Interviews were online apart from one faith leader interview. Focus groups lasted between 53 and 66 minutes; interviews with faith leaders lasted 56 and 62 minutes, respectively. All focus groups and interviews were recorded with consent, professionally transcribed and checked by the study team.

Analysis

We analysed the data as one data set using framework analysis.54 Four study team members (FG, AS, JH, SR) initially each read a transcript from study area one, discussed the data and identified potential themes for public survey questions. JH read and coded all transcripts from area one using the topic guide as a framework, identifying themes from which we confirmed topics for the survey questions. Two researchers (CB and CM) then independently coded one focus group transcript to check for consistency and themes were discussed with JH. CM then further developed and refined the coding framework to analyse the remaining focus group and interview transcripts. Finally, AS read all transcripts and confirmed final themes with CM.

Results

We recruited 21 public participants to 4 focus groups, mostly in area one (3 focus groups 16 participants) and 1 individual interview. Recruitment in areas two and three was extremely challenging. We conducted two faith leader interviews; both participants were from Christian faiths. We identified four themes.

ReSPECT could help normalise discussion about emergency care

Participants across the focus groups acknowledged that death and planning for the end of one’s life were sensitive topics, and many people resist having these conversations. They agreed that ReSPECT could offer a way for individuals, families, and clinicians to begin the conversation.

It’s a really helpful tool, a kind of lever to, to have a conversation about end of life and about dying with people, and I think that’s a conversation that people find very hard to have, but it’s a really important conversation to have and I think having a document that acts as a stimulus to a conversation about end of life is really useful and really important and we don’t do enough of it, so I think it’s a good thing to have.

Participants initially discussed ReSPECT conversations as important for people approaching the end of life or with a progressive or life-limiting condition. This progressed to a discussion of relevance of ReSPECT for a much wider range of people, as emergencies could occur at any age, and that everyone inevitably would have deteriorating health. Early conversations and records of a person’s wishes could help families make difficult decisions.

I think you’re focusing more, aren’t you, on the elderly people, but you talk, it’s got the word ‘emergency’ in the title, and you could be in a car accident at 25, you know, there’s all sorts of reasons when it could be brought in.

I think life is a terminal illness. You know, … we’re all gonna get there. And I think it’s important to think about these things while you’re able to, you know, whatever your circumstances are, because it, it takes so much pressure off your family.

Good communication during the ReSPECT conversation between patient, relatives and health professional was seen as important to ensure good understanding of the purpose of the plan and the potential future scenarios and treatments. Participants were clear that the health professional needed to be skilled in having these conversations and thought that conversations would work best when the person had an established relationship with the health professional, although they recognised that this was not always possible: ‘I think it, it’s, it’s the person you have the best relationship with, not everybody has a good relationship with their doctor’ (public focus group 1).

Some participants suggested that increased public awareness of ReSPECT, for example through the media, would encourage more people to have these conversations. They suggested ideally it should become normalised ‘like the organ donor card’ (public focus group 2). The person should be at the centre of the process

A key theme across focus groups was that the ReSPECT process should focus on the individual, recording a plan that reflected their wishes and preferences about their future treatment. Some participants thought the ReSPECT plan was an excellent means for a person to communicate their wishes.

… I think they seem like a very useful tool so that you can, kind of, convey your wishes before being in that situation, if ever. At least you’ve laid out a sort of plan and your, your wishes can be respected.

However, some participants expressed concern that the ReSPECT process was insufficiently focused on the person. The form seemed medically orientated rather than person orientated. In one focus group where participants were mainly care home residents’ relatives, several compared the ReSPECT form to an ACP that they had completed for their relative on entering the home. They felt the ReSPECT plan, with its focus on emergency treatments, did not capture their relative’s reality which was more of a slow decline rather than sudden emergencies.

the one we filled in here for when my mother came in, I thought was wonderful, it was about how she wanted to be treated, you know, and it was very reassuring. I look at this and think it’s not really relevant to her, … it’s not really suitable, ’cause it’s so difficult to answer the questions. Whereas the, the form we filled in here was very warm … and personal and this is very bleak.

Participants were concerned that the person may not understand what was being discussed in a ReSPECT conversation, particularly if conversations were initiated at a late stage in a person’s illness trajectory. They commented on the potential complexity of treatment options discussed and the uncertainty of prognoses or potential future events. One participant expressed a feeling of disempowerment when considering completing a ReSPECT plan at a time of deteriorating health.

But actually, in a, a real-life scenario I think I would feel quite disempowered, that other people hold the power about things to do with my life. And I really, you know, in my most vulnerable state I don’t even know what my options are.

One faith leader suggested that it could be helpful for some people to include a faith leader in their discussions about life-sustaining treatment.

All participants across the focus groups felt strongly that the plan needed to be reviewed regularly to reflect changes in the persons health status and wishes over time.

… your views definitely change … I think it should be re-evaluated, as I say, I think to a certain degree you like to put it in the back of your mind, but sometimes I think when you’ve had more time to think about it, your views might have changed. So, I do think there should be a follow-up on it, definitely.

Yeah, that already then is a flaw in the system to me. Because what I might wish to do today may change due to experience, different circumstances. Your health might, you know, you, you, you might think your health is A today, and in two years’ time something else happens.

ReSPECT and the patient’s family

There were mixed views across the focus groups about the extent to which families should be involved in the ReSPECT process. Many thought it was important that the person’s family was involved in or aware of the ReSPECT plan to ensure that the person’s wishes were followed and take pressure off the family.

If you’ve got that understanding, there’s no fear …, you’re then at, at, at peace internally, you know, you’re at peace with what is happening to your other, to your other half, rather than not knowing what that person wants.

This will help your relatives make a difficult decision in a time when you’re not there to advise.

The ReSPECT process could also reduce conflict between family members when decisions needed to be made when the person was very unwell.

I think it helps promote clarity between the, … patient and, and their relatives about what might be wanted … It’s not necessarily going to fix all of the misapprehensions that people have, but it’s, it is a clear way of having that conversation and, and, you know, flushing out whether there are agreements or disagreement, it’s a really important thing.

[I]t, it really needs to, to be a, an open discussion which is not just linked to the immediate close person in your life. I think it has to, it has to be wider. And then the, because it’s, it will be for, for everyone it would be a very, very emotional situation to deal with.

However, other participants noted that not everyone wanted their families to be involved in or know about their healthcare decisions.

And, you know, in, in some cases perhaps somebody doesn’t want this to be discussed with the whole of the family, because it is their treatment, and there are issues about confidentiality, even within the family.

Participants recognised that it was often difficult for clinicians when faced with families who wanted them to intervene for their sick relative, even when there was a form specifying that this was not what the patient wanted.

Scepticism about use of the plan in an emergency

While many participants talked about the benefits of having a ReSPECT plan, they were not confident it would be followed in the situations it was designed for.

I’m not entirely confident that having … an emergency care treatment plan will necessarily produce the result that the person was expecting, because I think there are all sorts of things that could get in the way of what somebody wants actually being implemented.

Participants identified several obstacles to effective use. They discussed practical problems in ensuring the plan was available when needed. Someone living at home may forget where the form is kept or be too sick to tell the health professional, usually a paramedic, who is attending. A potential solution would be a centrally held form or record of the plan that was accessible to clinicians at the time. Participants were generally sceptical of the ability of current NHS electronic systems to provide reliable access to these plans. Participants were not confident the recommendations on the plan would be followed. Examples were given of paramedics noting plans but then taking a different course of action because of their clinical judgement.

And both of those people had the ambulance service come, both of them showed the ambulance service the documentation, and both of them were told that they would not take that action, they were there to save life. And that upset both families very much.

Ambiguity in the plan recommendations could result in actions that were inconsistent with the plan’s intention. For example, a recommendation about not being admitted to hospital without specifying the relevant circumstances may lead to someone being admitted/not admitted inappropriately. Participants recognised that it was impossible to specify every circumstance and provide detailed management recommendations. They recognised that recommendations would need to be read quickly in an emergency so should be quite brief, but that this created a tension with communicating detailed person specific instructions about a person’s care.

You do need something that’s fairly quick to refer to, because you can’t give a, a long kind of detailed set of instructions if it’s going to be read by paramedics and, and that sort of thing in an emergency situation.

Some participants commented that it was important to think of the recommendations as guidance but that the attending clinician would need to ultimately make the treatment decision, and people would need to trust that the clinician would act in their best interests.

I’m still convinced that the doctor makes the decision at the end of the day.

For me the form is a way to help people think about these things, express an opinion, but it’s not obligatory, as it says on the form…it’s useful for clinicians who don’t know that patient. To have something there, as guidance, and know that there has been a discussion, particularly in an emergency.

Lack of resources could result in recommendations not being fulfilled. For example, if treatment at home rather than hospital was recommended this might require urgent nursing or other support.

Reflecting on these challenges to effective use of ReSPECT plans, some participants questioned how person centred the plan was: ‘it seems to me control is taken away from you and that’s what’s so frustrating and tiring and bureaucratic’ (public focus group 3). However, even if the plan was not available or could not be followed precisely, some participants still regarded the process as helpful to ensure the person’s wishes were taken into account.

I’m a realist though and I perfectly understand that come the day when I get unplanned admission to hospital nobody is actually gonna dig through my file in the GP practice, and dig this out from seven years ago, and respect my wishes. But at least my daughters might remember something that was said.

Survey of attitudes of the British public to emergency care treatment plans

Parts of this section are reproduced with permission from Underwood et al.55 This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See: https://creativecommons.org/licenses/by/4.0/. To understand the views and attitudes of the public on the concept and use of emergency care treatment planning, we carried out a national survey. Here, we describe the survey and its findings.

Methods

Questionnaire development

To ensure a high-quality nationally representative population sample, we commissioned the National Centre for Social Research to include our questions in the annual British Social Attitudes (BSA) survey.56 The BSA is the UK’s longest-running survey of public opinion. It provides a high-quality nationally representative attitudinal survey with a stratified sample based on postcode and includes face-to-face data collection using computer-assisted personal interviewing and self-completion. Question development was a collaborative process between the study team and the BSA team. Firstly, members of the study team (AS, FG, SR, JH) developed a draft set of questions, drawing on data from focus groups. Following feedback from our co-investigators and lay advisory group the questions were further refined. Next, the study team met with the BSA team and, through an iterative process, the final set of questions to be included in the BSA annual survey were agreed. We aimed to determine the willingness of members of the public to complete an ECTP for themselves or someone close to them, under what circumstances they would consider completing one and who they would prefer to complete the plan with. We also sought their views on potential benefits or harms of having an ECTP. A sample of the questions were then tested by the BSA team in cognitive interviews with 10 people, and the full set of finalised questions was piloted with a sample of 56 participants recruited from the BSA panel database and using telephone interviews. Results of the cognitive interviews and pilot were discussed with the study team and minor modifications made to question wording (see Report Supplementary Material 6 for final questions).

Data collection

Data collection was carried out in accordance with the National Centre for Social Research’s protocol for delivery of the BSA survey. Invitations to participate in the survey, with the option of online or telephone interview completion, are sent to a stratified sample of households in the UK identified from the postcode address file with up to two adults in each household able to participate. Two online access codes are provided to each household. If selected households do not wish to complete the survey online, they are able to call a freephone number and arrange to complete the survey by telephone with a specialist telephone interviewer. To maximise response up to three invitation mailings are made. Respondents are offered a conditional £10 incentive to participate. Fieldwork took place between 9 September and 30 October 2022. The target sample for administration of our question set was 1000.

Analysis

In addition to descriptive statistics for each question, we present logistic regression analyses investigating the variables associated with the three dichotomised dependent variables: (1) being in favour of anyone being able to have an ECTP (strongly and somewhat in favour vs. the other categories); (2) whether they would like an emergency care and treatment plan at present (definitely and probably would like vs. the other categories) and (3) (for those who did not already have an a emergency care and treatment plan) how comfortable (very and fairly comfortable vs. the other categories) they would feel about making such a plan for themselves. For each analysis, the independent variables were age, gender, ethnicity, educational level, having an illness lasting more than 12 months, caring for someone ill or with a disability and being close to someone with a condition that could shorten their life. These were chosen after discussion within the study team to identify ‘a priori’ the most important possible independent variables. Using the statistical software R Core Team (2023; R Foundation for Statistical Computing, Vienna, Austria) for each dependent variable, both fully adjusted model and non-adjusted models were fitted at the 5% significance level. With very few missing data, the logistic regression models for binary data fit well.

Results

All data used in these analyses have come from the National Centre for Social Research British Social Attitudes Survey 2023 © National Centre for Social Research September 2023.

Of the 6699 respondents to the BSA survey 1135 completed our module. Overall, they were sociodemographically representative of the UK although minority ethnic groups were slightly under-represented against age standardised values (see Appendix 3, Table 10). Seventeen respondents (1.5%) currently had an ECTP. Among these respondents, the most common trigger for ECTP completion was a diagnosis of a life-threatening illness (7/17) or long-term condition (6/17) (see Appendix 3, Table 11). Eight respondents with a completed ECTP were aged under 45 years and 7 aged 45 years or over. Most plans (10/17, 59%) were completed by the respondent’s GP (6/17) or another doctor who knew them well (4/17; see Appendix 3, Table 12). Of respondents with an ECTP, most were very comfortable (9/17) or comfortable (5/17) with the discussion. However, one respondent was fairly uncomfortable and one very uncomfortable with the discussion.

Attitudes to emergency care treatment plans

A large majority of respondents were in favour of people being able to have an ECTP if they so wished, with 908/1135 (80%) at least somewhat in favour (see Appendix 3, Table 13). Females were slightly more likely to be in favour than males [82% vs. 77%; odds ratio (OR) 1.45; 95% confidence interval (CI) 1.06 to 1.97; p = 0.02]. When compared with those with no qualifications, people with degrees were significantly (p = 0.002) more likely to be in favour (70% vs. 84%; OR 2.68, 95% CI 1.42 to 5.07). However, the absolute difference is modest and there is not a clear trend for more people with a higher educational level to be more in favour of ECTPs. Overall, ethnicity did not appear to affect people’s views, although the numbers in each group were small. However, people of Asian ethnicity might be less likely than those identifying as white British to be in favour of everyone being able to have an ECTP 67% versus 82% (OR 0.45, 95% CI 0.25 to 0.84, p = 0.012) (Table 1).

Of respondents who did not currently have an ECTP, 698/1112 (63%) felt they would be at least fairly comfortable making an ECTP, with only 49/1112 (4%) saying they would be very uncomfortable having an ECTP discussion (see Appendix 3, Table 14). Compared with those with no qualifications, people with degrees were more likely to feel comfortable having an ECTP (70% vs. 49%; OR 2.48, 95% CI 1.40 to 4.39; p = 0.002; Table 2). Comfort with completing an ECTP was not significantly associated with age, gender, or experience of caring for someone with a long-term health condition. Of those respondents who said they would like to have an ECTP for themselves, half (316/618, 51%) would want their GP to complete this with them while one-quarter (161/618, 26%) would want a doctor or nurse who did not know them but was trained in making ECTPs to do this (see Appendix 3, Table 12).

Who would like an emergency care treatment plan for themselves and when would they want to have it in place?

Half of respondents without an ECTP (620/1112; 56%) would want one at present (see Appendix 3, Table 15). Overall, fewer people in older age groups would want an ECTP at present; however, the difference was only statistically significant for one comparison; 63% in those aged 18–24 years compared with 47% for those aged 65–69 years (p = 0.045, OR 0.5, 95% CI 0.26 to 0.98; Table 3). People with a chronic physical or mental health condition that reduces their activity were more likely to want a plan at present compared with those in good health (64% vs. 52%; OR 1.78, 95% CI 1.30 to 2.45; p < 0.001; see Table 3). Knowing or caring for someone with a long-term physical or mental health condition did not affect whether they would want an ECTP for themselves (see Table 3). In answer to a more specific question of when you would want an ECTP in place for yourself, 152/1112 (14%) would want one ‘now’ with just 36/1112 (3%) saying that they would never want one. Developing a long-term condition or becoming disabled would lead 467/1112 (42%) and 481/1112 (43%) respondents respectively to want an ECTP. Even more 534/1112 (57%) would want a plan if they developed a life-threatening condition (see Appendix 3, Table 16). Of the 441 people who said they would want an ECTP when they were older, the peak decades identified were their 60s and 70s with 270/441 (61%) wanting an ECTP in place by the time they were aged 70 years (see Appendix 3, Table 17). When asked if they would like to be involved in completing an ECTP for a close family member if they were not able to do this for themselves, 930/1135 (82%) said that they definitely or probably would (see Appendix 3, Table 14).

Perceived potential benefits and harms of emergency care treatment plans

To explore how responders felt about potential benefits and harms of ECTPs, they were asked whether they agreed to a series of statements in relation to ECTPs. Predominately, 938/1135 (83%) respondents agreed or strongly agreed that ECTPs would help avoid their family needing to make difficult decisions on their behalf, and that a plan would ensure doctors and nurses knew their wishes (Table 4). Nevertheless, a small majority 628/1135 (55%) agreed that there is a serious risk that a plan could be out of date and so not reflect their current views or health condition, and a substantial minority 330/1135 (29%) agreed that in having a plan they might not get a treatment that would save their life (see Table 4).

For each of our regression models, the results of our univariable analyses were not materially different from our multivariable analyses (see Appendix 3, Tables 18–20).

Summary

Overall, participants in the focus groups and faith leader interviews were supportive of the concept of ReSPECT or emergency care treatment planning. They thought it could be an important tool in precipitating and facilitating important conversations about end-of-life care. However, they thought the process and form needed to be more person centred. They emphasised the importance of in-depth conversations to understand the person’s preferences and to be confident that the person understood the future options being discussed. Involving the family was seen as important but the level of involvement needs to be determined by the person whose plan it is. Several concerns were raised about whether the plans would be available or followed in an emergency.

From our survey, we found that members of the public across the UK are overwhelmingly supportive of anyone being able to have an ECTP if they wished, and half of those without a plan would want one for themselves. However, very few respondents currently have an ECTP in place. Most respondents would also like to be involved in completing a plan for a close family member if the person was unable to do so for themselves. Respondents with a chronic physical or mental condition that reduces daily activity were more likely to want an ECTP than those in good health. Unexpectedly, younger participants, were more likely to want a plan for themselves than older participants. Potential triggers for completing an ECTP were a change in health status with a diagnosis of a chronic disabling or life-threatening condition or increasing age. Respondents recognised benefits of ECTPs including ensuring their wishes about treatment are known and easing decision-making burdens on their family. However, they also recognised potential risks of ECTP recommendation becoming out of date and a potential risk that they may not receive a life-saving treatment. Respondents would prefer to complete an ECTP with their GP or a doctor or nurse trained in ECTP conversations, reflecting views expressed in our qualitative data about the importance of the relationship and quality of the conversation.

Strengths and limitations

To our knowledge, we have completed the first community survey of the UK public’s views and attitudes to the completion of ECTPs. The use of the annual BSA survey to collect these data means that we can be confident that our sample is nationally representative and that the data quality is good. However, this approach will exclude many for whom ECTPs are most relevant, that is frail older people and those with cognitive impairment. The slight under-representation for people from minority ethnic groups is typical of push surveys of this nature but is not large enough to affect our overall conclusions. The rigorous process for developing our questions, including preparatory qualitative work, and their piloting by the BSA survey team minimises question ambiguity. Nevertheless, it is still possible that some respondents misunderstood the purpose of each question. Some caution is needed when interpreting statistical significance because of the large number of analyses done.

Despite contacting a wide range of community and faith groups, several of whom supported advertising the study, we received very few expressions of interest for focus group participation. Feedback suggested that many groups had insufficient resources to support recruitment. GP patient groups had often stopped during the COVID-19 pandemic. We were unable to purposively select participants for demographic variability because of lack of interest in two study areas. The small number of faith leader participants meant that it was not possible to achieve our aim of exploring the impact of different faith values on how people might view or engage with ReSPECT. All participants had a particular interest in, or experience of ReSPECT or ACP so may not have reflected the views of the general public. However, because of their interest and experience, our participants were able to provide in depth reflection on the topic.