How ReSPECT is used in primary and community care, experiences of health and social care professionals

In this chapter, we focus on how ReSPECT is used and experienced in practice in a community setting. First, we report our survey documenting how GPs from across England view and use ReSPECT. Then using our qualitative data, we explore how GPs and their staff conceptualise ReSPECT, initiate and carry out the ReSPECT conversation and complete the plan. We explore their views and experiences of how they negotiate challenges, what happens after the ReSPECT plan is complete and any monitoring of the ReSPECT process within their practice. Similarly, we report the views and experiences of ReSPECT among senior staff in care homes and other health and social care staff who encounter the ReSPECT process and ReSPECT plans completed in the community. We then report on the content of ReSPECT forms stored in general practice medical records.

General practitioner survey

Parts of this section are reproduced with permission from Underwood et al.57 This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) licence, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: https://creativecommons.org/licenses/by/4.0/

Methods

Obtaining good response rates to surveys of GPs’ views is challenging; return rates of ˂ 30% are common.58–60 There are substantial operational challenges in sourcing up-to date contact details of groups of GPs that can provide national representation, and that include the range of professional roles (partners, salaried non-principals, locums and trainees). For these reasons, we commissioned a market research company, medeConnect, to include our questions in their monthly online survey of 1000, regionally representative, UK GPs (GP Omnibus).61

Questionnaire development

Drawing on initial analysis of our interviews with GPs, and reflecting the questions in our public attitudes survey, members of the study team (AS, FG, JH, CB) developed a draft set of questions. We aimed to measure experience of using ECTPs compared with standalone DNACPR forms, views on the use of ECTPs in primary care, and how likely they were to complete a plan for their patients. During question development, we identified that knowing which factors might predict how comfortable GPs were at having an emergency care treatment planning consultation with a patient, or family member, as a key questions of interest, and likely to reflect how likely a GP was to complete a plan with their patients. We originally planned to use 11-point numerical rating scales to assess GPs’ attitudes to aspects of emergency care treatment planning. Input from our qualitative work and the work we did refining the questions led us to conclude that five-point Likert scales were more likely to be satisfactorily completed and the findings would be easier to interpret; that is, ‘very comfortable’ to ‘very uncomfortable’ for our main outcomes of interest.

Following feedback from our lay advisory group and GP co-applicants, a revised set of questions was further refined through cognitive, think-aloud interviews with a small number of GPs not involved in the study. The final set of questions were piloted within the format of the online survey (see Report Supplementary Material 6).

Data collection

The market research company, medeConnect, draw their sample from GPs who are registered with Doctors.net.uk and who have been active on this online platform. Opportunity to take part in the monthly survey is posted on the home page of all GPs who have been active on the site within the previous 90 days and an e-mail is sent inviting participation to all GPs who have given consent to be approached to take part in research. Each GP can only participate once. Doctors.net.uk undertakes weekly automated checks of its membership base against the publicly available licensed status of practising doctors in the UK as published and maintained by the General Medical Council. Before a survey starts, the questions are tested by the internal research team, the sponsor (in this case the research team based at Warwick) and a small sample of the target group (Miles N, personal communication, medeConnect, Abingdon, 16 February 2023).

Analysis

For a binary outcome on our key question of interest (very comfortable or comfortable completing a plan vs. all other responses) a sample size of 1000 would, if 50% were ‘comfortable’, provide precision of 6.2%, or if 80% were comfortable a precision of 5%. This is the size of the medeConnect monthly survey and hence our original sample size. However, this includes UK GPs based outside England who were not covered by our research ethics approval. Thus, a smaller number of responses was expected. We present descriptive statistics for each question. For the outcome of how comfortable GPs are in having emergency care and treatment plan discussions, with patients or with someone close to the patient, using the statistical software R Core Team (2023), we first did univariable logistic regression analyses at the 5% significance level with gender, GP role, NHS region, type of area (major conurbation, large town/city, medium town/city, small town/city, hamlet) years since completion of GP training, and use of ReSPECT form versus DNACPR/Other as explanatory variables. We then constructed a fully adjusted logistic regression model. We repeated this using a backward elimination approach to select the most statistically significant variables.

Results

The survey ran from 4 November to 27 November 2022. We received 841 valid responses, all fully completed. Our respondents’ demographic characteristics are largely representative of the whole population of English GPs (see Appendix 4, Table 21). Half (426/841, 51%) of respondents reported that their practice used standalone DNACPR forms. ReSPECT forms were used by 41% (345/842) and 7% (55/841) used other locally developed ECTPs with 2% (15/841 reporting no ECTP or no knowledge of ECTP use) (Table 5). There were substantial regional differences in the forms used; ReSPECT was the predominant form used in the East Midlands (49/62, 79%) and West Midlands (74/92, 80%) whereas a DNACPR form was most commonly used in London (87/114, 76%), the North East (33/44, 75%) and the North West (88/115, 77%) (see Appendix 4, Table 22).

Almost all respondents (780/841, 92%) reported that in their practice ECTPs were completed by GPs, with some practices also including advanced nurse practitioners (234/841, 28%) or specialist nurse practitioners in elderly care (140/841, 17%) in this role. No respondents reported GP trainees being involved in completing ECTPs. However, respondents thought a wider range of healthcare professionals should be able to complete these forms, including GP trainees (522/841, 62%), advance nurse practitioners (648/841, 77%) and specialist nurse practitioners in elderly care (663/841, 79%; see Table 5). Similarly, there was broad support for a wide range of community-based health and social care professionals being able to complete ECTPs, with over 80% respondents supporting senior community nurses completing ECTPs (82–95%), half supporting senior nurses in nursing homes completing the forms (430/841, 51%) and 25% (207/841) supporting senior care home staff to do this (see Table 5).

The primary trigger for considering completing an ECTP was a change in the patient’s health state, particularly if the health state was life limiting (diagnosed with a life-threatening condition (722/841, 86%), or likely to die within the next 12 months (813/841, 97%). Plans were less frequently considered for someone living with a long-term condition (509/841, 61%) or who was severely disabled (497/841, 59%). Admission to a care home was a prompt for 71% (596/841) respondents, whereas only 24% (199/841) would consider completing a plan based on the patient’s age alone. Change in health status was the main trigger for a review of an ECTP (595/841, 71%), with only 58% (486/841) of respondents reporting any form of regular review (annual, 6-monthly or at over 75 years health check). Strikingly, only 57% (477/841) of respondents reported reviewing an ECTP in response to a patient request (see Table 5).

Overall, emergency care treatment planning was viewed positively, with 90% (751/841) respondents agreeing that having a plan ensures that treating clinicians know the patient’s wishes and 82% (689/841) agreeing it can avoid patients’ families making difficult decisions. However, 50% (425/841) respondents agreed that a patient’s current health condition may not be reflected in the plan when implemented and 41% (348/841) that there is a serious risk it could be out of date when needed (Table 6). A minority (142/841, 17%) of respondents agreed with the statement that having an ECTP means that the patient might not get a treatment that would save their life (see Table 6).

Seventy-two respondents (9%) reported that a family member or someone close to the patient was not involved in the conversation the last time they had completed an ECTP. The most common reason for not involving the patient’s family was that the patient had capacity (54/72, 75%), although on occasion the family were not available (18/72, 25%) or the patient did not want the family involved (11/72; 15%). On just one occasion, this was because the family did not want to be involved (see Appendix 4, Table 23).

Most responders reported being comfortable having ECTP conversations with both the patient (679/841, 81%) and the patient’s family (668/841, 79%; Table 7). In our univariable analyses, for conversations with patients we found that when compared with London, GPs in five regions were more comfortable in having emergency care planning conversations. GPs working in a larger practice (> 12,500), and those who reported using a ReSPECT form were also more comfortable with emergency care and treatment planning discussions. Those completing their GP training more than 20 years ago were less comfortable, and locum/salaried GPs were also less comfortable with these discussions (see Appendix 4, Table 24). A similar pattern was seen for discussions with the patient’s family or someone important to the patient (see Appendix 4, Table 25).

In our adjusted analyses, for conversations with patients, locum and salaried GPs were substantially less likely than GP partners to be comfortable having ECTP conversations (OR 0.51, 95% CI 0.31 to 0.83, and 0.53, 95% CI 0.34 to 0.82, respectively; see Appendix 4, Table 24). For conversations with family members, the difference was only statistically significant for salaried GPs (OR 0.58, 95% CI 0.38 to 0.88; see Appendix 4, Table 25).

General practitioners in the South West and the North East were substantially more likely to be comfortable with emergency care treatment planning conversations with patients than GPs in London (OR 4.30, 95% CI 1.50 to 13.3 and 4.10, 95% CI 1.29 to 15.1, respectively). Considering conversations with family members, GPs from the South-East, East Midlands and Yorkshire and Humber were also more comfortable than GPs from London (OR 3.06, 95% CI 1.24 to 7.59; 4.03, 95% CI 1.23 to 13.2; 3.15, 95% CI 1.21 to 8.25, respectively; see Appendix 4, Tables 24 and 25).

General practitioners whose practices used ReSPECT reported being more comfortable having these conversations with both patients and family members compared with GPs who reported use of DNACPR forms (OR 1.72, 95% CI 1.1 to 2.69 and OR 1.85, 95% CI 1.19 to 2.87, respectively). A broadly similar pattern was seen for conversations with family members or someone important to the patient (see Appendix 4, Tables 24 and 25). Results from our sensitivity analysis using a backwards elimination model were not materially different (see Appendix 4, Table 26).

Primary and community health and social care professionals’ experiences of the ReSPECT process

Parts of this section are Reproduced with permission from Slowther et al.62 This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) licence, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: https://creativecommons.org/licenses/by/4.0/

Methods

We visited GP practices and talked to staff to understand their processes related to ReSPECT, interviewed GPs and other practice staff involved in the ReSPECT process, interviewed senior staff from care homes and carried out focus groups with other health and social care professionals. We obtained from participating practices, anonymised demographic data on all patients with a completed ReSPECT form documented in the previous 12 months.

Recruitment

General practices and their staff

Three CRNs recruited practices across three diverse CCG areas in England (Figure 1). During site initiation visits, we obtained consent from the designated principal investigator at each site for their practice to be involved in the study. We arranged a suitable time for the researcher to spend a day at their practice to learn about their ReSPECT procedures from clinical and administrative staff. Each principal investigator was asked to identify two to three GPs and/or specialist nurses who were involved in conducting the ReSPECT process in their practice. Invitations to participate were e-mailed and interviews arranged.

FIGURE 1 Recruitment flowchart for GP practices. (Figure not reproduced here; see the original article.)

Care homes and care home staff

We recruited care homes through the GP practices participating in the study plus additional care home staff through the local Enabling Research in Care Homes (ENRICH) team.63 Care homes that expressed interest in participating were contacted by the study team. We contacted interested care homes to provide further information and arrange a meeting (in person or online) with the care home manager to discuss the study and what it would involve for them and their staff if they took part. We purposively sampled care home staff most likely to have engaged with the ReSPECT form or process, guided by the care home manager/senior staff member who had knowledge of the care home and ReSPECT. Care home staff recruited by ENRICH contacted the study team directly.

Other health and care professionals who engage with ReSPECT

We aimed to run focus groups in each of our three study areas, with community-based nurses, allied health professionals working in the community, emergency department staff and social care professionals. We advertised the study through networks and teams of local practitioners and for home care workers, through local private home care 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 were unable to join a focus group a time for an individual interview was agreed.

Data collection

Participating practices identified patients with ReSPECT form completion documented in the previous 12 months and provided anonymised demographic data for these patients to the study team.

During visits to GP practices the researcher aimed to find out about the ReSPECT process from initiation through to form storage. Anonymised field-notes of behaviours, actions and conversations were taken and typed up and expanded after each visit.

All interview and focus group participants were provided with a participant information sheet and blank consent form to read in advance. Focus group participants received a shopping voucher as a thank you for participation. Interviewees were given the choice of remote [telephone, Zoom™ or Microsoft Teams® (Microsoft Corporation, Redmond, WA, USA)] or face-to-face interview. Focus groups were held remotely (using Zoom). For face-to-face data collection, we obtained written consent. For remote data collection, the consent form was read out and consent recorded by the researcher for each item. During practice visits, we obtained and documented verbal consent at the start of each conversation. All interviews were audio and/or video-recorded, apart from one GP interview, one group interview with care home staff and one focus group with paramedics. Consent to audio-record was not given for these interviews; therefore, detailed fieldnotes were made instead.

Our topic guide for the semistructured interviews and focus groups (see Report Supplementary Material 5) was informed by our research questions and developed with input from the co-applicant team and lay advisory group. It covered experiences of initiating, conducting and organising the ReSPECT process in the context of their work, completing forms with patients/residents, managing any challenges or tensions arising from implementing ReSPECT, and how ReSPECT form recommendations were used.

Five researchers (CJB, JH, KE, CM and JW) carried out semistructured interviews with GPs, care home staff and other health and social care professionals. Focus groups were facilitated by one or two researchers (CM, JH, SR and KE). Researchers recorded and shared reflective notes about the data collection process to refine the topic guide to consistently address any new issues or topics emerging during the interviews.

Audio-recorded data were transcribed by a professional transcribing company. We checked and anonymised the interview transcripts and allocated each transcript a study identification number.

Analysis

For GP practices and care homes, we initially grouped the data by practice/care home then read and reread the data before writing a summary of how ReSPECT was approached and managed within each practice or care home. Then for each interview/focus group, we used an a priori coding framework developed using the stages of the ReSPECT process and the main constructs of NPT: coherence building (conceptualisation), cognitive participation (initiation and engagement), collective action (use and documentation) and reflexive monitoring (evaluation).44,45 The study team (FG, CJH, CJB, JH, CM, AS) made several refinements to the coding framework to increase its relevance to the data set. We used the agreed framework to code in NVivo™ software (NVivo v1.6.1, QSR International, Warrington, UK), a purposive sample of 50% of the interviews with GP and care home staff (sampled across all practices and care homes and types of staff) and all focus groups/interviews with other health and social care professionals. For emergency department staff, we limited our analysis to data about their engagement with community completed ReSPECT plans. During the coding process, we wrote memos of the key messages and themes emerging from the data. CM performed intercoder reliability on four interviews early in the process. The team then read the remaining data, looking for new codes or additional nuances in the data.64 The ethnographic fieldnotes were used to supplement the clinician interview data. We analysed the coded data in three groups according to the participant’s relationship to the ReSPECT process: GPs and their staff who take responsibility for completing ReSPECT forms in the community, staff of care homes as residents commonly have ReSPECT forms and the staff use them in emergencies, and other staff who engage with community-based ReSPECT processes and forms. Within each data set, we compared data coded for each stage of the ReSPECT process and report our analysis following the ReSPECT process. Finally, we compared findings across the data sets and summarised the results.

In presenting our results, we mostly use the term ‘patient’ as this is the term used by many of our participants. Care home staff use the term ‘resident’, so we use that term in reporting data from these participants. Home care staff use the term ‘client’. As the data from these participants are reported together with health professionals who use the term ‘patient’, we use the word patient in this section to avoid confusion. Unless we specify a clinical role, we use the term ‘clinician’ for registered health professionals.

Results

We recruited 13 general practices across the study sites which were generally representative of England in terms of indices of deprivation (Table 8).65 We recruited 11 care homes via our participating GP practices of which 3 provided nursing care (see Figure 1). One care home was specifically for younger adults. We recruited two care home staff via ENRICH.

Characteristics of patients with a ReSPECT form completion documented in the previous 12 months are presented in Table 9. There was wide variation in proportion of patients with a ReSPECT form recorded across practices. The reasons for this are multifactorial and include variation in patient populations, systems for identifying patients for whom a ReSPECT plan may be indicated, and practice systems for recording ReSPECT plan completion.

We undertook 1-day fieldwork visits at 11 of the practices (2 were unable to accommodate a visit) involving 124 clarifying conversations with clinical (n = 49) and administrative staff (n = 75) with varying levels of knowledge, experience and involvement in the ReSPECT process. Conversations took place in offices, staffrooms, patient waiting areas, consulting rooms, meeting rooms and/or main reception. Across the practices, we spoke with GPs, nurses working in the GP practices, healthcare assistants, paramedics working in the GP practices, a community pharmacist, a social prescriber, receptionists, medical secretaries, clerks, administrators and managers.

We interviewed 21 GPs, 5 specialist nurses, 12 care home managers, 3 senior care home nurses and 16 senior carers/care co-ordinators. Following their request, 11 care home staff were interviewed in small groups (1 of 6, 1 of 3 and a pair). All interviews were remote except for 1 GP and 18 care home staff interviews. Interviews lasted between 13 and 100 minutes.

We conducted remote focus groups with seven home care workers (in two groups), three community palliative care nurses, two paramedics, six community nurses (across two groups) and interviewed remotely five emergency care doctors and one community nurse. Sessions lasted between 28 and 65 minutes.

The views and experiences of general practitioners and their staff of the ReSPECT process

Conceptualisation of the ReSPECT process

There was broad consensus that ReSPECT plans were more comprehensive than older DNACPR forms and could empower patients to vocalise their wishes and take some control over their care: ‘It allows for a wider discussion than just a DNACPR discussion’ (GP 1, area 2). ‘We see it [ReSPECT] as a way of giving the patients control back about their future care’ (GP 2, area 2).

Clinicians saw the ReSPECT process as something that should not be rushed or viewed as a tick-box exercise but rather, used as a prompt to have nuanced and explorative discussions about patients’ varied needs. This included tailoring the plan to the patient’s lived experience:

You can tailor-make the document depending on what the patient’s views are about a variety of aspects of their future care … It’s important that it’s a holistic conversation rather than a just a tick-box exercise … [that] encompasses all of the aspects of a patient’s care, rather than just that one specific question.

Sometimes clinicians seemed to conflate ReSPECT plans with ACPs, which encompass broader preferences around end-of-life support.

Clinicians saw the ReSPECT process as a way of reassuring patients that they would be able to access the appropriate treatment to protect their quality of life: ‘Because I think it’s reassuring them we’re not abandoning them … it’s just giving them the best treatment in the best place for them’ (GP 3, area 2).

Although many healthcare professionals thought the ReSPECT process could promote patient empowerment there was concern that it could ‘be more harmful [psychologically to the patient] to force a ReSPECT … than not’ (GP 4, area 1).

Clinicians viewed the ReSPECT process as primarily benefiting those who had capacity and could be involved in the discussion. In a staff room, two GPs and a nurse discussed that the patient-centred dimensions of the ReSPECT process could be lost in situations where the patient lacked capacity and could not vocalise their wishes easily, if at all:

it is important that ReSPECT forms are not completed during a crisis when everything is in disarray, the patient has lost capacity and is unable to express their own preferences. The GP felt that this would defeat the point of the form, which is there to document the wishes of patients.

Two GPs interviewed suggested the ReSPECT form would be improved by having a place for patients to sign to indicate their shared ownership of its content:

The form lacks somewhere for them [patients] to sign … And that often I give it to them to sign anyway because it feels like it’s their form as well.

Patient-shared ownership of the ReSPECT plan content was considered important if relatives have different views. One GP during a visit to his practice was noted to say:

It is crucial for the patient to tell their family what they want before they lose capacity and equally important for clinicians to talk to the family about the patient’s wishes so that everyone is ‘singing from the same hymn sheet’. The GP said, if relatives disagree with the wishes of the patient, the clinician can say that ‘I have on paper what the patient wants’.

A specialist nurse felt that the ReSPECT form provided patients with the opportunity to confirm in writing their preferences for treatment so the relatives could communicate this in an emergency. The relatives would be able to give ‘this piece of paper’ (specialist nurse 1, area 2) to the paramedics who could read it and know immediately what the patient wanted.

Some clinicians referred to patients’ wishes and ReSPECT form recommendations as decisions to emphasise the conclusive and fixed dimensions of acceptable care. They highlighted the need for these to be respected and upheld in a crisis:

I said [to patient] it’s a document, it tells what action needs to be done if you are not well. What are the actions any healthcare professional needs to take and decide? So your decision is the future if you really become unwell.

Conceptualising it as a final clinical decision particularly applied to the section on DNACPR.

I tried reassuring [the patient that having a DNACPR in place did not mean that active treatment would be withdrawn] but in the end I did have to remove it because she felt so strongly. I am aware it’s a clinical form and it’s a clinical decision, especially do not attempt resuscitation.

Other clinicians considered a ReSPECT form to be a guide to steering the clinician, relative and patient through difficult situations. One GP said that the form was particularly useful for: ‘Agency staff [in care homes] at a weekend who are unfamiliar with the patient [because] it acts as more of a guide for them for what to do with that patient’ (GP 3, area 2).

Initiating the ReSPECT process: general practitioners and their staff

The ReSPECT process was initiated both systematically and opportunistically, with systematic initiation by far the most common. Systematic initiation occurred when patients were added to the palliative care register or admitted to a care home. Sometimes, a hospital discharge letter would suggest initiating the ReSPECT process. At end-of-life care meetings, staff discussed the need to initiate the ReSPECT process or review an existing ReSPECT form and how quickly this was needed.

Clinicians said that most of their patients who had forms were elderly and frail, receiving palliative care or in the advanced stages of their illness. The clinician would ask the administration team to make an appointment for patients they thought would benefit from the ReSPECT process.

Clinicians reported that the COVID-19 pandemic prompted many care home staff to request that practices complete ReSPECT forms for all residents upon their admission to the home. However, clinicians noted that there were several negative media reports claiming that clinicians were completing ReSPECT forms to ‘write off their relatives because they lived in a care home or they’re elderly’ (specialist nurse 2, area 1). In some practices, training was provided for relevant clinical staff during the pandemic to: ‘ensure that the ReSPECT forms were fairly done for those who needed them … especially with the care home patients’ (specialist nurse 3, area 1).

Clinicians felt that care homes’ requests to ask GPs to complete ReSPECT forms for all new admissions was sometimes to reassure care home staff particularly regarding resuscitation, rather than to benefit the patient or their relatives:

The patient didn’t ask for a ReSPECT form; the family didn’t ask for a ReSPECT form. It’s their care home that had flagged that they don’t have a ReSPECT form, and yes, it would be appropriate for them not to be resuscitated, but often they, they are still for treatment, they are for admission … it just felt like I was doing that more for the care home than for the patients.

General practitioners reported requests from patients for ReSPECT plans including older people who were fit and well and patients who had advanced illness. However, these requests were uncommon. Clinicians suggested the lack of public awareness around ReSPECT may have precluded more people from asking for one. ‘I wish patients understood what ReSPECT was … more information, more awareness among the general public would be really helpful’ (GP 7, area 1). Our researcher noted there was no information about ReSPECT in waiting areas.

Occasionally, a GP would initiate the ReSPECT process at the time of a treatment decision:

If the patient at the time needs an admission and they don’t want to go in, we say, ‘Okay, well, actually they don’t have a ReSPECT form, this is an opportunity to take time to talk about it’.

Deciding when to initiate the ReSPECT process was a challenge for the clinicians – not too early and not too late.

There have been a few situations where we’ve spoken to patients who have had bad news that their cancer has progressed … I have sort of tested the water and said, ‘It, it’s important that whilst you’re still relatively well that we have a discussion about future care … and it’s been quite clear they have not felt ready, so you just leave it and revisit it’.

When the patients are very angry about diagnosis, then it’s not always appropriate to discuss [ReSPECT] with them.

Some clinicians thought that building relationships and getting to know the person first would enable them to gain insight into when ‘the right time to discuss’ ReSPECT would be (GP 6, area 2).

However, one clinician was concerned that waiting could lead to poor clinical outcomes for the patient if they were taken to hospital against their wishes simply because a form hadn’t been completed in time:

Sometimes it will be said in a meeting, ‘Oh, the, the patient’s not ready to have that discussion yet’. I think really that’s a bit of a code for, ‘I felt uncomfortable bringing this up as a clinician because the patient was upset’, which is something slightly different … because I think the worst-case scenario is a patient who deteriorates quickly who doesn’t have any opportunity to discuss their wishes … and therefore defaults to full escalation in hospital. It might not be what they want, you know.

Another clinician felt that sometimes the best course of action was not to initiate the ReSPECT process. The example given was when likely length of life was uncertain, and the patient had fluctuating capacity:

And if you are looking at a very elderly dementia patient … they could pass away either tomorrow or they could pass away in weeks and months … to make a judgment on … not for resuscitation and the patient doesn’t really understand it, who has fluctuating capacity, that’s a very difficult … I have refused to do a ReSPECT form in those situations.

Some clinicians did not want to invest time starting a conversation that was unlikely to be successful because the patient and/or family were unsure about it:

Occasionally you do think, I’ve not got the time to go into ... whys or wherefores when you’ve made it quite clear already that this isn’t something you’re going to even consider.

However, clinicians said that they often took time to prepare patients and/or family before having the formal ReSPECT conversation. One said that she would refer the patient to the palliative care nursing team for emotional support before initiating a ReSPECT conversation, if she felt the patient was distressed by the news of their terminal diagnosis: ‘The palliative care nurses … probably have to go and visit them [patient] a few times before they did it [ReSPECT] if they are really angry’ (specialist nurse 4, area 1).

An advantage of delaying initiation of the ReSPECT process until late in a patient’s illness trajectory was that there was more certainty about the trajectory and so the views of the patient and their family were more likely to align with those of the clinician. One GP described her experiences of starting a ReSPECT conversation in a care home setting as ‘easy’ given that residents ‘haven’t got a great quality of life and they’ve got lots of advanced health problems’ (GP 15, area 1). A similar view was also expressed for patients with capacity who were coming towards the end of their life ‘and [were] really quite unwell … focused and knew what they want[ed] to do’ (GP 4, area 1). These patients felt ‘relieved’ that ‘somebody [was] taking notice’ of their situation and listening to their concerns (specialist nurse 3, area 1).

Having the ReSPECT conversation and completing the form

Clinicians recognised the need to take time for most ReSPECT conversations unless a patient was very clear what they wanted. Although many used a normal appointment slot, some scheduled ReSPECT appointments as a last appointment of the session when the clinician might have more time or they allocated ‘dedicated time’ (specialist nurse 3, area 1) to conduct the conversation with housebound patients. Some combined it with the completion of other care plans to maximise time efficiency. Some conversations were completed as a one off, but others were conducted over several consultations according to patient need:

I guess it makes it nice and straight forward if you’re able to have that one conversation … [it] makes it easier if the family are on board and they understand the whole process. So, it’s whatever’s easier for the patient and their family. If they need that extra time or they’re not ready, then that’s fine.

One clinician described how a care home resident became very agitated when she tried to talk about a ReSPECT plan with them. They dealt with the situation by asking one of the care home staff to lead the conversation with the clinician present as the patient trusted the care home staff member:

This lady had capacity and we had a discussion about end-of-life care and the ReSPECT form. But it is a bit odd because the consultation was led by the carer rather than myself … So the carer said, ‘Because you got quite agitated at the doctor’s last time’, She said, ‘Oh, it’s better if I talk about it’.

If a patient was rapidly nearing end-of-life clinicians said that they tended to discuss with the patient broad issues of prognosis, future care and treatment. Where there was more uncertainty about end of life and the focus was on resuscitation status and ceilings of care, they asked more in-depth questions about patient wishes about treatment, hospital admission and CPR. Clinicians said that they explained to patients/families the differences between treating reversible health problems and offering comfort care to manage the symptoms associated with an illness:

After review of care plan, medication, and medical conditions, we discuss with the patient and if they’ve got any dementia, then the family members who have got a power of attorney … what is best way forward if their condition deteriorates…whether they want admissions during acute illnesses, or they want treatment at home. Do they treat illnesses if condition progresses, what are the options? Will the patient or the family want CPR for the patient or not.

Clinicians said the ReSPECT form gave them a structure for carefully exploring and listening to the patient’s views and wishes:

I think that’s what the ReSPECT form does it helps you to know these patients well … that’s really valuable because other people speak over you [the patient] or talk around you [the patient] it’s nice for somebody to listen to actually what you [the patient] would like.

Clinicians thought that the ReSPECT form questions worked well and: ‘allow[ed] a degree of tailor-made … approach to the patient, rather than just a one-size-fits-all approach’ (GP 1, area 2). A few clinicians found the personal preferences scale not always useful. For example, one GP mentioned: ‘A drawback of the ReSPECT plan is the personal preferences scale and how to interpret it when patients want to prioritise comfort care and life sustaining treatment’ (fieldnote, practice C). This GP suggested tick boxes regarding whether the patient or family wished (or not) to have hospital treatment in the event of different scenarios might be more helpful than text as paramedics could read it quickly (fieldnote, practice C).

Families were viewed as important contributors to the ReSPECT conversation. They were relied upon to give their perspectives when the patient had impaired mental capacity. For patients with capacity, it was still considered important for families to be involved in the discussion, so they understood, valued and supported the use of the completed ReSPECT form in an emergency. Clinicians had to manage differing views and allow families time to process the information about their loved one’s situation:

Unless the immediate carers or family are on board then you run the risk of the ReSPECT form being a bit useless because it’s not abided by … the family needed a bit of time to take on board what was being said and have that conversation between themselves, making sure that they were happy with everything. They really needed time to absorb … the diagnosis and prognosis.

Clinicians said that they had to carefully balance the wishes of patients and/or family with their own clinical judgement to avoid conflict during the ReSPECT conversation. Most talked about the difficulty of negotiating with patients and family who wanted resuscitation to prolong life when the clinician believed this was unlikely to be successful:

It’s more of a difficulty when you clearly see it’s futile, for example resuscitation, but the family members say, ‘But I want that’, [you] try to give scenarios why perhaps it wouldn’t work out as they would expect. Sometimes people have a slightly glorified view of resuscitation from TV and the reality is quite different, certainly in the sort of patients that we’re mostly dealing with.

Sometimes a clinician would attempt to dissuade patients and families from agreeing to CPR by speaking candidly about the potentially harmful consequences of undergoing the procedure. With some patients, they repeated this annually:

If you’ve got a healthy heart … you should go for it [CPR], but you’ve got a heart which is hardly functioning … CPR may help or you might survive an episode if you’re lucky, if you’re unlucky you might have a heart rhythm which goes irregular, and it might go into stroke. Or you might have more physical problems, so you’ve got to decide…we have a patient we feel they shouldn’t be for CPR, but they want to be for CPR, so every year we tell them.

To avoid patient distress, a clinician would leave the CPR recommendation box blank although in their clinical judgement CPR was unlikely to be successful:

I’d been there three or four times to discuss it [CPR] over a period with them and didn’t seem to get anywhere at all and I thought I’d feel like I’m just going to make them distressed if I pursue this any further.

Clinicians described the challenge of writing clinical recommendations in sufficient detail and clarity to be useful in a future emergency scenario. The form did not provide enough space or prompts for them to write about every eventuality that could befall the patient. One commented that even if there was enough room on the form to write down everything that might happen to the patient, it would still be impractical. Clinicians described how they attempted to provide recommendations that were broad enough to cover a range of scenarios for paramedics and care home staff to follow and specific enough to provide guidance on the patient’s unique situation:

I guess really what needs to happen is a much more consistent way [of writing clinical recommendations], a little bit more guidance regarding phraseology … rather than it being too vague, making it with a bit of sensible vagueness rather than – don’t send into hospital unless they need to be sent into hospital … which doesn’t really say very much.

One clinician completed the ReSPECT form by referring to the recommendations on the more detailed care plan: ‘In a ReSPECT form I try to mention the important things. The rest … I just write there, “Please follow the care plan”’ (GP 5, area 3). Some clinicians filled in the ReSPECT form after the conversation with the patient/family. Others completed it during the conversation for transparency: ‘I will write the ReSPECT form in front of them, so they can see what we’re doing, why we’re doing it, explain each section of the ReSPECT form’ (GP 6, area 2).

Once the conversation had been completed, a few clinicians said that they checked that the patient or family had understood what had been written on the form:

I’ve done the ReSPECT Form and the care plan, have you had a chance to look at it and check it over … if there’s anything you want to discuss then just feel free to give our receptionist a call and book in to have a chat with me and … any questions you’ve got about it.

Lack of time for ReSPECT conversations and ReSPECT training was commonly mentioned. Clinicians would be: ‘rushing from one thing to another and … could never [give] things quite the time that [they] would … want, because just sheer amount of numbers’ (GP 9, area 3). Clinicians were concerned that lack of training continued to feed into a cycle of avoidance because clinicians felt too uncomfortable with the emotional issues that ReSPECT raised and did not have the experience to know what treatments were likely to be successful on a particular patient.

You want to have that empathetic conversation with the patient in the end-of-life … How do you know … that point in life … [when] this patient is not fit for further treatment? It’s experience, it comes … But if you ask a junior doctor [to do this], you are talking about missed opportunities.

Since the ReSPECT conversation required clinicians to draw on their expertise, experience, and empathy rather than the interpretation of quantifiable medical data, it was described as ‘worse than breaking news’ that relied on ‘a histology … something that you could tell [and show] that to the patient’ (GP 7, area 1).

Storing and sharing completed ReSPECT forms

Eight practices had policies on completed ReSPECT form storage and sharing. All practices said they entered a code in the electronic medical record when a ReSPECT form was completed, but how completed ReSPECT forms were stored and shared varied. In practices using paper forms, administrative staff scanned signed forms onto the medical record and stored the original in reception until the patient, family or care home collected it. Clinicians sometimes took completed ReSPECT forms to care homes on their regular visits. In three practices, forms were left with the patients during home visits and a note made in the clinical notes that the conversation had been completed or a photograph of the completed form was uploaded. One practice stored the unsigned and signed copies of digital forms on their electronic medical record so if the patient or family lost their ReSPECT form, the signed form could be reprinted and given to them. Other practices using digital forms stored the unsigned copy in the electronic medical record and then printed and signed in wet ink and/or stamped a hard copy for the patient/relative.

Patients/families or care home staff were contacted to ask them to collect completed forms. Occasionally forms were posted to patients. Forms that had not been collected within a certain time frame would be followed up with a phone call. One receptionist thought that ReSPECT forms were more likely to be left at the practice if patients had changed their minds about their wishes since having a ReSPECT plan completed. However, how long ReSPECT forms remained uncollected varied and there were no standardised procedures to manage this, which meant that administrative members of staff often felt uncertain about what to do with them. There was also variation in how, if at all, reception or administrative staff formally documented in the medical record when a completed ReSPECT form had been collected and who had collected it. Some practices shared or sent completed ReSPECT forms to community nurses, paramedic staff and out-of-hours GPs.

Hospital discharge summaries usually contained brief details about what had been recorded on the ReSPECT form, often only the patient’s resuscitation status. One GP suggested it would be helpful for the GP to have a copy of the hospital completed ReSPECT form:

I think it would be very useful if the information from the original discussion could be [reported in the discharge summary] in more detail … exactly what discussion took place [with] who … an electronic copy to us, apart from just a patient copy, that would also be very useful … that would clear a lot of miscommunications … sometimes they [ReSPECT forms] just get lost because they will go through so many hands from the time they leave hospital to the time they come to their own house … And, we struggle to put in an emergency package in place if they [patient] lose any of that vital paperwork.

When clinicians managed to obtain the hospital completed ReSPECT form, they often found it was incompletely filled out with information that was incomprehensible ‘half things scribbled here and there’ (GP 5, area 3) or irrelevant to a community context: ‘ReSPECT forms completed in hospitals aren’t as useful as those completed at the practice because details are often limited to “ward-based care”, which becomes less meaningful when patients are returned home to the community’ (fieldnote, practice A). Clinicians felt obliged to review the patient’s situation and complete the form again to ‘see if it was still valid’ (GP 13, area 3).

Concern was expressed that ReSPECT forms held by the patient and practice might not be synchronised: ‘The actual paper copy might not get updated as much as the actual clinical system notes get updated’ (GP 3, area 2). This could potentially create confusion for paramedics and other clinicians. Paper-based plans could get lost, which could slow up care planning or prevent it altogether if the patient rapidly deteriorated. One GP reported that care home residents had been wrongly taken to hospital when their care home had misplaced their form but storage of forms at the care home had now improved. Many GPs and their staff said that practice-issued forms were printed in colour or stamped to verify their originality for paramedics. One GP thought that ‘now anything is accepted [by ambulance crews]’ (GP 5, area 3), including black and white forms.

Reviewing completed ReSPECT forms

None of the practices had a system for regularly reviewing all patients’ ReSPECT plans. One practice said they reviewed annually the care plans and accompanying ReSPECT plans of patients with dementia. In some practices, ReSPECT plans for patients nearing end of life were reviewed every 3 months or more. Other practices only reviewed a plan if a concern was raised during a palliative care meeting, a clinician thought to review it when a patient deteriorated, or a patient asked it to be updated:

Interviewer: Is there a formal process in place for reviewing the ReSPECT forms?

Respondent: They get reviewed at palliative care meetings … they tend to be reviewed if people have got concerns rather than there being an automatic process.

Paramedics triggered a review opportunistically if they noticed that the patient’s plan was outdated while treating them.

High workload volume was a reason cited why plans were not reviewed systematically:

When I asked the GP whether the practice reviews forms … she said bluntly that the practice can’t do this because they are already swamped and ‘I want a life’. She works 15 hours a day and is under a lot of pressure at work. She said that there is already too much bureaucracy to do. In an ‘ideal world’, she would review forms, but this isn’t currently practical.

Use of completed ReSPECT plans in medical emergencies

A clinician reflected on whether they could have made a ReSPECT plan clearer after a patient had died and the recommendations in their plan had not been followed:

We could have got a palliative care team in there within two hours, but instead she [patient] was admitted [to hospital] … what could I have put on there [ReSPECT plan] that makes any difference? I’ll tell you what I put … prioritise comfort, not for admission to hospital unless in the event of severe infection … [Patient Name] would not tolerate a hospital environment well. I’m now thinking, what else? Do I need to be more explicit? and it’s difficult because the form doesn’t lend itself to giving you plenty of room to be able to … put that information in.

This participant felt upset that she had subjected the patient to numerous ReSPECT conversations when it had no ‘bearing at all on her outcomes’. She recognised how little control she had over what happened to the patient.

Most clinicians considered the ReSPECT clinical recommendations to be for guidance only:

I think it’s there to give the person who’s making a decision in an emergency situation some guidance and, and that’s how I view it … I think a ReSPECT form is, this is what’s been discussed, this is what their wishes are. But you can certainly override a ReSPECT form if you felt it was appropriate.

Clinicians acknowledged that not all healthcare professionals would know the patient and therefore, be as confident in making the clinical judgement to follow a ReSPECT plan recommendation to avoid hospital admission, as the clinicians who did know them:

There’s always that risk of out of hours that, somebody with heart failure they deteriorate you know, we’ll ship them off to hospital. It’s quite explicit on the ReSPECT form what the patient’s wishes are, but I know that these aren’t always carried out … within normal working hours and it was one of the GP’s who know her then … following the ReSPECT form is much more likely to occur … out of hours is a slightly different scenario … I think that just comes down to not knowing patients and the risk profile slightly changes when you’re dealing with patients you don’t know.

This same GP felt frustrated that out of hours services seemed to ignore what had been agreed in the plan: ‘Out of hours are called and they ship them off to hospital and never bother looking at the ReSPECT form’ (GP 9, area 3).

Many clinicians had little confidence in paramedics following the clinical guidance recorded on the form because they were perceived to lack ReSPECT experience. One GP reported an account of a paramedic misunderstanding the form:

The paramedics came, saw the ReSPECT form … phoned the relative and said, ‘She’s end of life’, but she wasn’t end of life, it was just because she had a ReSPECT form saying, ‘Not for admission for hospital unless discussed with relatives’. … I don’t know if it was a junior paramedic.

A minority of clinicians said it would be acceptable for non-GP healthcare professionals to reject ReSPECT plan recommendations particularly if patients/family have changed their minds:

The ambulance and people like that, I think it [the completed ReSPECT plan] is taken into account, but then people [patients and/or relatives] change their mind and so they [paramedics] go by the acute situation, and I think that’s the right way to do it.

Patient safety was suggested by one clinician as a reason for overriding ReSPECT recommendations for home-based care if support at home was unavailable:

We have frailty consultants sitting in A&E … actually trying to very much follow what’s on the ReSPECT form … One recently that I’ve had is a gentleman who’s got quite severe postural hypotension. Didn’t have any carers at home, so he wasn’t safe to be discharged, but it’s, ‘Well, you know, you’ve got a ReSPECT form. You shouldn’t be here’. … I still believe that every clinician has got their own responsibility of what they need to do in that circumstance, regardless of what’s written down on a piece of paper … I wouldn’t want them … doing anything really invasive with him. But please keep him safe.

Reflecting on the ReSPECT process

Our interview data suggest that GPs and their staff informally reflected on how they initiated and undertook ReSPECT conversations. In contrast, there were sparse data on formal types of reflexivity, such as audits. GP 7, area 1, mentioned that their practice conducted death reviews every two years which included whether ReSPECT wishes were met: ‘we do this death audit … to see whether the criteria for deaths at home, whether the patient’s ReSPECT have been met, whether they died at home or in hospital or at a care home’ (GP 7, area 1).

The views and experiences of care home staff of the ReSPECT process

Conceptualisation of the ReSPECT process

Care home staff understood ReSPECT as part of providing person-centred care for residents. ‘I think it’s a tool to make their care more person-centred … it allows us to do exactly what they want’ (care home manager/deputy manager 1). ReSPECT was viewed as a means for residents to express and have documented their personal preferences and wishes for care and treatment in a clinical emergency and was therefore understood as empowering the resident: ‘The power is in their hands, rather than our hands and the medical professionals’ hands’ (care home manager/deputy manager 3).

In the context of the care home, ReSPECT was seen as enabling the enactment of residents’ wishes to die within the care home, rather than in hospital: ‘Certainly, in this setting, to be able to say if they would prefer to stay here for treatment rather than go to hospital’ (care home manager/deputy manager 1).

Several care home staff contrasted ReSPECT plans positively to DNACPR forms in terms of promoting more choice and ‘options’ (care home manager/deputy manager 3). ReSPECT plans were seen as facilitating a more holistic and person-centred conversation for residents that went beyond resuscitation whereas DNACPR was about what not to do for residents. For these staff, ReSPECT plans represented a shift in values of how to engage with people who were approaching the end-of-life, and facilitated more active and nuanced discussions with residents about their future:

I think the ReSPECT process has opened the door to have a freer conversation with people … With the ReSPECT now it can say, ‘Well actually, I don’t want to be resuscitated but if I did get an infection that, that could be treated then I would want to be treated for that’. So, it, it’s, it’s broadened the horizons and it’s given us the opportunity to have a more meaningful conversation with people really and say to them, ‘Well, you know, you actually can tailor what you want to happen to you’ … Whereas before I think peoples fear was that it was just, they were signing up to say, ‘I don’t want you to do anything to me’. You know, which is quite a significant difference really isn’t it?

However, two staff stressed that ReSPECT recommendations were ‘in practice’ (senior nurse/nursing lead 1) about determining resuscitation decisions for residents and they referred to ReSPECT and DNACPR interchangeably during interviews: ‘Ultimately, whether it’s a DNAR, it’s a ReSPECT, they all boil down to the same thing that this person doesn’t want to be resuscitated, or does, and then we have to act on that accordingly’ (senior nurse/nursing lead 1).

While a ReSPECT plan was understood by care home staff to primarily inform, and be used by, medical professionals, it provided important guidance for care home staff and reassurance they were acting in alignment with residents’ and their family’s wishes, particularly in clinical emergencies. For some, the plan was interpreted as a way to ensure resident wishes were upheld in situations where alternative decisions might otherwise be made. They made sense of their role as advocating for and promoting resident wishes:

Whereas before, our hands would be tied. We would always have to go with what the medical professional advised. If somebody didn’t have the ReSPECT form and they said that they needed to go into hospital even though that resident didn’t want to, the resident would still have to go into hospital. And we would be pushing for that resident to go into hospital. Whereas with the ReSPECT form, we can respect their wishes. And we’ve got that document to reassure us that we’re doing the right thing.

Initiating the ReSPECT process

The ReSPECT plans were typically completed with residents who were anticipated to be permanent or long term, at or nearing end of life, and/or who were seen as frail. ReSPECT plans were not typically completed with residents who were anticipated to be short-term stays (e.g. for respite care), who had moved into the care home to avoid social isolation or who were perceived as having a ‘good quality of life’ (care co-ordinator/senior carer 1).

Most residents who moved into the care home from hospital had hospital-completed ReSPECT plans. Few residents arrived with a community-completed ReSPECT plan. For new residents without a ReSPECT plan, where appropriate, ReSPECT conversations would be arranged as soon as possible after their arrival, usually within 6 weeks:

Having the ReSPECT form now is a part of our admission … rather than waiting until somebody’s unwell … if somebody’s moving in we wouldn’t scare them straight away and be like, ‘Right, we need, we now need to talk about your, the end of life and your ReSPECT and what your wishes are’. But very quickly into their stay here we will start that process and start talking about the ReSPECT form and what the nurses are here to do and their choices.

For new residents arriving with a ReSPECT plan, a GP review of the plan was requested and promptly carried out to ensure recommendations were ‘valid’ (care home manager/deputy manager 5). For residents who did not have a ReSPECT plan completed on admission, they were completed in response to changes in their health. The COVID-19 pandemic in 2020 had prompted the completion and/or review of ReSPECT plans within most care homes. In many cases, staff reported this had been initiated by local GP practices. However, a small number of care homes reported they liaised with GP practices themselves so that they were clear about resident wishes during COVID-19.

Care home staff were often the first to raise the issue of a ReSPECT plan with residents/families. Care staff would ‘mention’ (care home manager/deputy manager 7) ReSPECT plans with residents and/or families before the formal conversation. This included providing general information about ReSPECT and what it was about, prompting consideration of what resident wishes might be, and giving general reassurances about the process. This preparatory work was considered important for encouraging residents and/or their family to engage with the process, have conversations among themselves and to minimise distress.

Being able to explain to them how the ReSPECT process works has definitely helped to open the door for that conversation … So, I can sit down long before the doctor has that conversation and introduce … the ReSPECT process [so resident/relative can] digest it themselves ... that’s an important part of what we do, to take away the stigma … that then in turn makes the job a lot easier for the doctor.

However, care home staff asked clinicians to approach the family themselves if the family expressed reluctance to engage or did not understand the ReSPECT process:

[F]amily didn’t want the ReSPECT form or didn’t understand what the ReSPECT form was. So, we asked the GP to speak with the family member and just explain a little bit more in, the statistics of people being resuscitated at over 65 and, and all the important facts to consider when signing the ReSPECT form.

Having the ReSPECT conversation and completing the plan

General practitioners completed ReSPECT plans for residents in seven of the study homes; in four they were completed by specialist nurses. Care homes typically had weekly clinician visits or telephone meetings, during which new residents or changes in residents’ health could be discussed. Care staff would also telephone the GP practice to request ReSPECT plan completion or review if it was considered urgent.

Residents with capacity were often seen face to face, with family members present if appropriate/desired. Where residents lacked capacity families were consulted. If they were not local, conversations between the clinician and family were generally held by telephone.

Staff emphasised the importance of involving families as in emergency situations the care home staff would need to inform the family. Having common understanding about the ReSPECT plan with the family enabled the staff to ‘get it right’ (care home manager/deputy manager 7) for a resident in an emergency.

In four care homes, a care home staff member would sometimes ‘sit in’ (care home manager/deputy manager 3) during ReSPECT conversations to ‘support’ (care co-ordinator/senior carer 1) residents, ‘backing up’ (care home manager/deputy manager 3) the GP during difficult questions, and so that staff were aware of what had been discussed. One participant said that holding the conversation ‘together’ produced a ‘nicer outcome on the form’ (care home manager/deputy manager 2). Staff presence was seen as particularly helpful for conversations with residents who had communication difficulties. Staff presence was described as resident choice in the care home for younger adults.

Several care staff explained that they had trusting relationships with the residents which enabled them to support and reassure the resident during what was a sensitive and stressful time:

It’s a very delicate matter … when a resident’s here for quite a long while, you know, they gain trust … I think it is important, because they may want somebody with them just to sit with them for reassurance.

Care staff emphasised that responsibility for making clinical recommendations should lie firmly with the clinician, in discussion with the resident/family. One senior nurse commented that being able to write a plan themselves would be beneficial because they would include ‘more information’ (senior nurse/nursing lead 2).

Care staff generally felt that conversations held by specialist nurses were particularly person centred, as they knew the residents well and had more dedicated time to conduct conversations:

[The specialist nurses have] great relationships with the residents and their families. And they know them, which I think is really important … It’s not somebody who has no empathy with you as an individual. They have the detail … it’s a delicate conversation … has to be approached with empathy. If you know those residents … it makes it a lot easier for [the residents].

When asked about residents’ views of ReSPECT, care staff reported that most residents (with capacity) were generally ‘happy’ (care co-ordinator/senior carer 13) and receptive to conversations about ReSPECT, provided they were handled with sensitivity. Some referred to ‘the odd case’ (care home manager/deputy manager 3) where residents had surprised staff by expressing alternative wishes to GP recommendations (typically that they wanted to be resuscitated and/or receive further interventions). However, they felt that many residents did not think about their ReSPECT plan once it had been completed. One participant explained that they would not refer to the plan as ReSPECT per se but talked about it to residents in terms of ‘making choices’ about future care/treatment and end-of -life (care home manager/deputy manager 4).

Storing and sharing completed ReSPECT forms

Once ReSPECT conversations had been held with residents/families, plans were typically finalised and signed-off by the clinician at the GP practice who would then notify the care home when the completed form was ready for collection. Alternatively, the clinician would bring completed forms to the home on their weekly visit.

Most care homes also uploaded scanned copies of ReSPECT forms into an electronic system for managing resident data. In some homes, this could be accessed on staff devices. Care homes flagged ReSPECT resuscitation recommendations within these electronic systems. Three care homes stored only hard copies of forms. Four care homes also used a ‘grab pack’ (care home manager/deputy manager 6) or ‘grab sheet’ (care co-ordinator/senior carer 15) for ambulance call-outs that contained a residents’ relevant documentation (ReSPECT form, medication list; ACP).

ReSPECT form storage was planned for quick retrieval in an emergency. Original forms were either stored in residents’ individual care file or in one folder/cabinet accessible to staff, with a prompt in residents’ individual files/records to indicate ReSPECT form for retrieval. Some care homes also used a purple wallet or purple file tab within resident files for quick identification of forms.

Visual symbols were used including a ‘red sticker’ (care home manager/deputy manager 8) or ‘butterfly sticker’ (senior nurse/nursing lead 1) in the front and sometimes spine of resident files/folders to signify do not resuscitate. Another care home used a ‘love heart’ (care co-ordinator/senior carer 10) on residents’ rooms’ doors to signify for resuscitation.

A challenge faced by staff was the inability to share paper-based plans when reporting an emergency. In one case, care home staff reported they had been asked to begin CPR for a resident by the emergency call handler who had insisted staff had a duty of care to do this until the paramedics arrived, although the resident’s ReSPECT form recorded not for CPR. They were then questioned by paramedic staff about why they had attempted CPR.

Staff pointed out that paramedic staff had no formal way of checking whether a ReSPECT plan was up to date. A strongly held view among the majority of staff was that as well as the paper copy (and scanned upload to the care home system), it would be beneficial to have a centralised system which could be accessed by all health and care professionals involved in treatment decisions for a resident, so that everybody was following ‘the same information’ (care home manager/deputy manager 7).

Several care staff reported paper forms could ‘get lost’ (care home manager/deputy manager 6) in transit or do to not ‘come back’ (care home manager/deputy manager 6) from hospital with residents. Staff were unclear how GPs stored completed ReSPECT forms and were unclear if paramedics had access to them.

Many of the homes used ACPs or integrated care plans for residents, which expand on ReSPECT recommendations and address different types of clinical scenarios. These plans were completed by the clinician and provided medical history for residents, details regarding conversations held with residents/family and greater depth regarding agreed treatment in different situations. Care homes that used these plans found they provided greater clarity and ‘detail’ (care home manager/deputy manager 8) to follow in an emergency. These plans were shared with paramedic staff who used them alongside ReSPECT forms to decide on treatment. Some participants suggested that where ACPs or integrated care plans were available the ReSPECT form tended to be used just to guide them regarding resuscitation decisions. ACPs would be kept for residents in their personal files/with their care plan.

Reviewing completed ReSPECT plans

Care home staff emphasised that a ReSPECT plan could be updated to reflect changes in resident wishes or circumstances. However, only half described a clear or routinised process with GP practices for reviewing completed plans. In the others, reviews were mostly ad hoc and arose ‘naturally’ (care home manager/deputy manager 2) in response to changes in a resident’s health or condition:

We don’t touch them really once they’re in place … the doctor reviews them when they first come in, if there’s any clinical changes then she would review them again whenever we ask her to. Obviously if she’s seen somebody that’s become end of life or something like that, she would review it, that’s the only input we have with them, they’re not taken in and out of the file.

In care homes that undertook regular review, these were part of overall care plan reviews for residents. These occurred at different intervals – monthly, 6-monthly, annually. Staff at one home described using a checklist during their care plan review which included question prompts to check the ReSPECT form was still on file, up to date (in terms of personal details and resident’s health/condition) and reflected the resident’s wishes. Where reviews occurred at regular intervals, they were typically carried out by specialist nurses rather than GPs.

Most interviewees did not express strong views about a routinised review process. One senior care home nurse suggested that it should involve more in-depth discussions with residents than was experienced currently:

I think that it should be a discussion again because things might have changed within a year, and a resident may have forgotten what they said a year ago. I think that rather than just, ‘Do you feel the same?’ ‘Yes’. ‘Okay, we’ll sign you off’, kind of thing, it should, should be a whole discussion again.

By contrast, one staff member considered that reviewing ReSPECT plans regularly was burdensome for residents:

If they’ve got capacity at that time to make that decision, why is this then being questioned repeatedly, again and again and again. Because asking somebody every six months if they want to be resuscitated or not and talking about death and dying with them every six months, is quite harsh on somebody that’s approaching that stage of their life and having memory problems. They don’t really know what’s what.

Use of completed ReSPECT plans in medical emergencies

Care home staff stressed the importance of making all staff aware of the presence of a ReSPECT form so that a resident’s wishes could be upheld, and the right treatment given:

making sure all the staff are aware … if somebody doesn’t want to be resuscitated or if somebody does want to be resuscitated, if they don’t want to have hospital treatment, or if there’s specific scenarios where they would want to go to hospital.

However, a common practice was that a senior staff member would be called upon to manage and provide leadership in emergency situations and to liaise with healthcare professionals attending the emergency. Several participants reflected that understanding regarding ReSPECT plans and their use varied among staff, and in some cases was more limited among junior frontline staff. One participant found it confusing that ReSPECT forms could state not for resuscitation alongside active treatment recommendations: ‘I don’t understand it … they’re not for CPR, but they’re for hospital. That’s what is not clear’ (senior nurse/nursing lead 3).

Another respondent recounted how resuscitation had been delayed for a resident as staff interpreted the presence of a ReSPECT form for a resident as equivalent to a DNACPR recommendation, leading to feelings of guilt and remorse among staff. A small number of staff therefore expressed a preference for ‘the old DNAPCR form’ (senior nurse/nursing lead 3) because it signified clearly and immediately that someone was not for resuscitation:

I liked them because you knew they were just not for resus. You just knew … with these new ReSPECT forms, you’ve got two boxes, and I’m not sure if these carers, or seniors, actually know that you need to see which one is ticked.

A few other staff also reported frustration that staff needed to check which resuscitation recommendation had been made.

Some staff were uncertain as to whether recommendations could be overridden and in what circumstances:

Sometimes, if you feel that the resident needs to go to hospital, we sometimes talk to the family and then ask them if we could ... because, in case, you never know, they might get better or not … I’m not sure if we can override their [the resident’s ReSPECT] decision … without talking to them [relatives]

Some staff reported struggling to interpret recommendations. Recommendations such as ‘for ward-based care’ or ‘not for admission’ were considered unhelpful and ‘vague’ (care home co-ordinator/senior carer 8). ReSPECT forms that had been completed in hospital for residents were described as especially ‘basic’ (senior nurse/nursing lead 2), ‘sketchy’ (care home manager/deputy manager 4) and lacking personalised information. For example, one form was described to stipulate: ‘Very frail. Not for resuscitation’, which was felt by care staff to be ‘not person-centred at all’ (care home manager/deputy manager 7). Such recommendations lacked a plan for ‘treatment escalation’ (care home manager/deputy manager 4) and active directives that staff could follow. Where ReSPECT recommendations were vague or ambiguous, some staff used the ReSPECT form only for resuscitation decisions.

Staff suggested that ReSPECT recommendations did not always neatly reflect scenarios encountered within the care home, leading to uncertainty for staff over the right course of action.

Interpreting ReSPECT recommendations in emergency situations was ‘difficult’ (care home manager/deputy manager 7) for some care home staff as they were ‘not nurses … not doctors’ (care co-ordinator/senior carer 12) and struggled to assess the precise condition of residents:

What are we to do if somebody’s unresponsive, and it’s unusual for them? We’re not just going say, ‘Oh, well, they’ve got a DNR in place, it’s normal’, because it’s not normal … I know they’re not for resuscitation, but if somebody’s got palpitations or problems with their heart, and they’re not having a heart attack, they still need looking at …They still may need medication or treatment that can be sorted rather than leaving it and having a full-blown heart attack when it’s something that can be controlled.

Uncertainty among staff was particularly pronounced in incidents where ‘it’s something that could be treatable’ (care home manager/deputy manager 7) and/or where they had a resident that ‘clearly needs some medical help’ (care home manager/deputy manager 8). Staff often felt compelled to seek further medical assistance.

Some care home staff expressed difficulty with conveying to emergency services their need for additional medical interpretation and/or enactment of ReSPECT recommendations. In some cases, emergency call handlers and/or paramedic staff had questioned why they had been called when a ReSPECT form was in place, particularly where ReSPECT recommendations were not for resuscitation, or not for admission to hospital.

Once that ReSPECT form is in place, and we then need to call an ambulance for some reason, it’s like, ‘Well, why have you called them? They’ve got a ReSPECT form in place. It says not for hospital admission’, … but sometimes, there are reasons that we do need to call them.

One care home manager recounted how clinical recommendations such as ‘not for admission’ had, in their view, prevented any treatment for a resident because they felt the paramedics had interpreted it as meaning no treatment at all could be given:

Sometimes it will say, ‘Not for admission. Prioritise care and comfort’. … they [paramedics] are interpreting that [as] maybe they can’t give treatment because it says, ‘Not for admission’. You know, if it said, ‘Prescribe within the community’, … [there] needs to be more in it.

Care home staff described tensions both with and between healthcare professionals about care and treatment decisions. One resident was taken to hospital contrary to their ReSPECT recommendation, as paramedic staff had called relatives who requested that the resident was taken. Staff reported feeling frustrated that they later needed to explain the chain of events to the resident’s GP, who challenged the decision to admit the resident to hospital. Another resident with a ‘not for hospital admission’ recommendation had been transported to hospital by paramedic staff. The ambulance staff had explained that they ‘need to make the decision based on what I find here’ (care home manager/deputy manager 5), and they were not happy for the resident to remain untreated within the care home. The decision-making process was not clear to the care home manager, but she had felt unable to argue. Later, when discussing the incident with the resident’s GP, the care home manager recalled that the GP had expressed their frustration that ‘a different health care [professional] would make a different decision’. The care home manager described such incidents as ‘confusing’ and ‘demoralising’ and had resulted in a ‘lack of confidence in the ReSPECT system now’ (care home manager/deputy manager 5).

Reflecting on the ReSPECT process

Our interview data suggests that care home staff informally reflect on the ReSPECT process. Established processes for reviewing care plans for residents were used in half the care homes to check on residents’ ReSPECT plans. Several homes reported they had reviewed their ReSPECT plans and were planning to review them at least ‘annually’ (care co-ordinator/senior carer 8) prompted by this study.

The views and experiences of the ReSPECT process among other health and care professionals who engage with community-based ReSPECT process and resulting completed forms

Conceptualisation of the ReSPECT process

Participants in all focus groups agreed ReSPECT should be a person-centred process. Nurses and an emergency department clinician talked about the ReSPECT process as empowering for patients.

Sometimes when you do talk to your patients who are elderly with multiple long-term conditions, when you explain it to them, and you have that time … they’re quite thankful. And [say things] like, ‘No, I wouldn’t want to be, have CPR’, or ‘I wouldn’t want to be going to hospital’, or ‘I’m always worried that somebody’s going take me from my home’. And maybe when you get to a certain age in life some, not all, are, are okay at discussing their death and dying.

I think it’s a brilliant form … gives the patient a voice … out of habit with the NHS and the healthcare system, I think we steal peoples’ voices quite a lot, and make decisions on their behalf, so I think it’s really important from that point of view, because it gives them their voice back.

Another focus group with nurses discussed ReSPECT as a conversation people do not want to have when they are living well, so it must take place around a deterioration in health.

Home care workers emphasised that ReSPECT was an important mechanism for their clients to document and record their wishes for emergency treatment: ‘It’s getting your wishes … across isn’t it?’ (home care worker, focus group 2). ‘It’s a good way to have something in writing, that the person has a choice in what happens to them when they are in a state where they’re not able to make decisions’ (home care worker, focus group 1).

Many nurse participants discussed how the ReSPECT plan is considered the same as DNACPR. One nurse commented that if a healthcare professional asks if a patient has a ReSPECT plan, they might be asking if the patient is for CPR.

People [healthcare professionals] say, ‘Oh, have you got a ReSPECT form?’ Well, that doesn’t mean they’re not [for CPR] you need to know what it says on the ReSPECT form … not just that they’ve got a ReSPECT form … are you asking have they got a DNACPR? Or are you asking if they’ve got a ReSPECT form? Because it might not be the same.

Some home care workers expressed a similar interpretation of ReSPECT plans as being predominantly about resuscitation decisions. Some emergency department staff talked about a tendency in hospital to treat the document as mainly about DNACPR.

One emergency department clinician had only seen two ReSPECT forms which said ‘for resuscitation’ and one nurse had only ever seen one example of this, which runs the risk of creating assumptions and that ‘the purple plan’ becomes associated with the DNACPR concept.

Initiating the ReSPECT process

Nurses discussed initiating ReSPECT conversations as part of their normal duties when interacting with very ill patients. Home care workers ask patients if they have a ReSPECT plan when they first assess them: ‘We … document what … the information is, so that we know the wishes of that person … how their care needs to be’ (home care worker, focus group 2). However, a few home care workers said they would make patients aware of ReSPECT plans if the patient didn’t not know about them.

Sometimes you ask people have they got a ReSPECT form, and they look at you blank, so you completely know that they have no idea what you’re talking about … that always leads me into a conversation about what it is.

I think we may make people aware that they’re available to people if they … want [to] consider them, but we don’t ever give people options in terms of that.

Nurses agreed that timing for the conversation works best when it fits with the developing relationship between the nurse and patient. They prefer not to complete a ReSPECT plan on a first visit when they are still building a relationship with the patient; however, sometimes patients begin expressing these wishes in a first visit and it can be a good opportunity to start completing a plan. It was agreed that the conversation evolves as relationships build. ‘So, you want to have those conversations at a time that feels right for the patient. You don’t want to lose that relationship by, by taking them there too soon’ (nurse, focus group 2).

Patients may initiate the conversation, often through a casual comment about their wishes, which can be used to trigger plan completion. If someone was very unwell, imminently dying and the process had not been completed, a nurse would start the ReSPECT process but, ideally, the conversation would happen before a medical emergency arose.

If patients are not ready to talk or feel disempowered by a previous negative conversation, starting a conversation about ReSPECT can be difficult. Nurses talked about the need to avoid damaging their relationship with the patient through starting the conversation at the wrong time for the patient. They felt it is better to wait until the patient expresses that they are ready.

One group of nurses talked about patients being reluctant to engage with the ReSPECT process if they perceive it to be only DNACPR and that patients need to be made aware the process gives many choices beyond DNACPR. One participant suggested that some patients and families are scared to discuss the topic due to their fear of an implied ceiling of care.

Some people are quite open and they’re happy to talk about it and, they’re open with their wishes. Some people have said ... straight away, ‘No, I don’t want to be resuscitated’. And others … they’re quite reluctant to speak about death and whether they would want CPR if their heart was to stop. Because sometimes they take it as, ‘They’re not gonna do anything for me, they’re not going to treat me anymore’.

Home care workers explained that asking patients whether they had a plan in place during their initial support assessment required sensitivity:

It’s not nice to think about. Whenever we ask at assessments … we’re like, we’re, we’re really sorry to ask you these questions, but what are your funeral plans, and things like that. But they’ve got to be asked.

Undertaking the ReSPECT conversation and completing the plan

There was broad agreement that in the community, the ReSPECT conversation should be held by the clinician with the closest relationship to the patient, who has time available and can meet the patient and relatives in the patient’s home. This is usually the GP or palliative care nurse.

It’s a big part of our [palliative care nurse] role is trying to plan for what somebody wants as they enter the last months or weeks or days of life.

[The GP] is kind of the linchpin of all that … medical lead for their care in the community.

Several focus groups discussed how high staff turnover and high rates of agency and junior staff limited expertise within community nursing teams for undertaking ReSPECT conversations. The loss of GP–patient familiarity was mentioned by several groups as patients see a range of GPs and have other people involved in their care including pharmacists and other allied health professionals. Having a range of healthcare professionals trained and able to undertake ReSPECT conversations and completing plans would be helpful.

Palliative care nurses noted that other healthcare professionals might record having a ReSPECT conversation with a patient but would leave it to them to complete the plan:

I see it documented a lot of the time: ‘had ReSPECT conversation, they [patient] will discuss with palliative care nurse when they go’ or things like that. So, it might be that they’ve initiated a conversation but not necessarily gone through with the whole conversation and the document and completing it. And a lot of it is left for us.

In several focus groups of nurses, there was discussion of the need for communication training for ReSPECT conversations with patients. Participants who had received this training talked about the confidence it had given them.

There was broad agreement of the importance of involving families in ReSPECT conversations but that this can be complex. ‘Some people don’t want to have the discussions with the family members there and some people clearly don’t want to have the discussion until their family members are there’ (nurses’ focus group 1).

Involving families was considered an opportunity to get them to talk about what might happen and what was important to the patient:

It gives less responsibility … to the family members because you’ve already made those choices for yourself when you’re capable of doing so. People aren’t having … guesswork and fight amongst themselves because it’s already been discussed and written up.

As for the family, it can give them a little foresight … they will know ahead of time that their relative has already said ‘I don’t want to do this when it hits this point’. The family can kind of prepare themselves that this could be that point … rather than us just having to tell them there and then in that minute, and then them going through all the emotions in that second.

However, participants also talked about families who have been upset when they have not been involved:

I had a conversation the other day with somebody who really didn’t understand what the form was all about. It was the daughter of a relative [who had been involved with ReSPECT conversation], and their concern was that the DNACPR box was ticked, and they didn’t think that was fair.

Several participants commented that the level of literacy and health literacy of patients/families can make involvement in ReSPECT conversations difficult.

Storing and sharing completed ReSPECT forms

Community nurses talked about patients who took a paper ReSPECT form into hospital with them but it did not come home with them. Paramedics suggest that some patients can be reluctant to take the form with them to the hospital for fear it will be lost. Emergency department staff are frustrated that more long-term ill patients do not arrive with forms. In one focus group of nurses, there was uncertainty about knowing you have the most recent copy of the form. Several focus groups with nurses discussed the need for a shared electronic version of the form but expressed despondency about this coming about.

Home care workers explained that ReSPECT forms were stored in patients’ care files, within their home, and were slightly oversized compared with other documentation so that they were visible and quickly retrievable in an emergency. ReSPECT recommendations were also written and highlighted in red at the front of care plans and were recorded electronically so that they could be accessed by all home care staff.

Participants talked about the content of ReSPECT forms they had read. They commented that when doctors complete a ReSPECT form the resuscitation section is always completed but the patient preference section might not be. They suggested that the plan is only useful to patients when their wishes are accurately considered and recorded. ‘The forms are only as good as the information that’s on there and the detail that’s on them’ (nurses focus group 1).

Home care workers found handwritten forms difficult to read and they struggled to understand clinical shorthand:

The only thing that I think is wrong with them is you can’t read the writing on them sometimes when the doctor writes on them … it can be hard … you can’t quite understand what those conditions are that they’ve noted on there.

Can’t understand it … It’s like hieroglyphics.

It was generally agreed that there can be great variety in the content of the form depending on who has undertaken the conversation with the patient.

Reviewing completed ReSPECT plans

Nurses working in the community acknowledged there was no formal system for reviewing ReSPECT plans but that they should be reviewed. Some reviewed ReSPECT plans during routine annual reviews with their patients. Others talked about initiating a review when the patient expressed wishes about treatment during a conversation. The nurses agree that ensuring that the plan is up to date could help improve the quality of the recommendations.

Use of completed ReSPECT plans in medical emergencies

Many participants thought a completed ReSPECT form was very helpful for clinicians: ‘Having a clear documentation that a patient has had the opportunity to make their wishes known, makes everybody’s life easier’ (emergency department clinician interview 3).

There was agreement across the data that the absence of a ReSPECT form can be very distressing for healthcare professionals attending an emergency, especially if the decision is whether to perform CPR. Nurses, home care workers and paramedics talked about how paramedics now usually ask for the ReSPECT form as soon as they arrive, and always in a care home. Paramedics report that ReSPECT forms are sometimes not kept physically close to the patient which can cause delay and impact treatment. ‘If staff walk all the way to the office where the form is located it can take 10 minutes, but this may be too late, and you have already started CPR’ (paramedics focus group). Paramedics found some patients have multiple forms; in which case they use the most recent.

Nurses gave positive examples of where ReSPECT plans worked well in practice – many of these examples referred to patients who did not wish to go to hospital. ‘Some patients, it is that plan in place, you know, “I don’t want to be put in hospital”, or, you know, it’s only for reversible things, infections or broken bones’ (nurses focus group 3).

One participant of this group explained how this decision to not go to hospital can be empowering for patients. Another talked about the benefits, not only for patients but also for carers including care home staff who need to decide what action to take in a medical emergency. A ReSPECT form might give them confidence to call the GP service rather than an ambulance. ‘May go right down the route of a GP as opposed to a 999 call or 111 services’ (nurses focus group 3).

However, nurses and home care workers reported that patient wishes were not always recorded in the plan in a way that is helpful to determine actions. Emergency incidents requiring home care workers to use the form were described as rare, but home care workers stressed that they did not feel the form provided sufficient information to guide them in an emergency:

I think it could be clearer whether we’re supposed to take action or not take action on, on the wishes that are on there. Naturally you want to help someone when they’re in that state … and it would be good maybe if there was an outline of what we’re expected to do.

In emergency situations, home care workers therefore always called an ambulance or phoned NHS 111 for medical assistance and emphasised their role in informing emergency health professionals of the presence of a ReSPECT plan.

Emergency department staff and paramedics indicated that ReSPECT forms completed well give them confidence to act in an emergency and feel that they are respecting the patient wishes. ‘We are probably the most dependent on them from a perspective of urgency. And I think what is very difficult to get across to anybody else is how vitally important they are at that time-critical moment’ (emergency department clinician interview 3). However, they found that patient wishes are not always clearly recorded in a way that is helpful to emergency decision-making. Paramedics said that sometimes there is not enough information recorded on the ReSPECT form to defend a decision not to take a patient into hospital even when you know it is what would be best for them. They mentioned that the paramedic workforce is generally young and inexperienced, and it is hard to make challenging decisions on the spot, so paramedics need clear and easy guidelines to follow that they can defend.

A nurse focus group and most of the emergency department participants discussed how disagreement between the wishes of families and patients can complicate access to or use of ReSPECT forms in emergency scenarios. One nurse gave an example of a couple where the husband had a form marked ‘not for resuscitation’, which his wife conveniently forgot to find each time he had to go into hospital as she felt that the paramedics treated him differently and more slowly if they knew he had a ReSPECT form. An emergency clinician had also encountered the situation where families do not want to bring the form because of a perceived ceiling of care. ‘I get the impression that, sometimes, families won’t bring in a ReSPECT form for fear that we will discount their relative as being unsavable, in inverted commas’ (emergency department clinician interview 2).

Reflecting on the ReSPECT process

There was no mention of any formal reviews of the ReSPECT process by any of our participants. However, our data indicate that participants informally reflected on the ReSPECT process and how they engaged with it. Some reflected on its impact within the NHS more generally.

Several participants remarked on the allocation of NHS resources to end-of-life care and suggested that enabling patient choice could also have significant cost-saving benefits. Paramedics and emergency department staff also suggested facilitating patient choice can improve the patient relationship with the NHS. ‘I think people would feel more empowered and supported if, if, yeah, if they had more choice about their treatment rather than just becoming part of the sausage factory’ (emergency department clinician interview 1).

One emergency department doctor suggested as well as empowering patients to make choices about their care there is a wider benefit for society in managing expectations.

I think that one of the things the NHS has done since its advent is assumed the responsibility for peoples’ life decisions and care decisions. People have become used to doing what the doctor tells them to do … But I think what it’s done, it’s distanced everybody from their own mortality, the end-of-life process and from their own death. So, between that and media coverage and [tv] dramas, everybody expects that every illness and disease is reversible. So, there is a huge disconnect between the reality of being a human being and what people expect.

The content of ReSPECT forms stored in general practice medical records

Methods

To evaluate the content of ReSPECT plans we reviewed ReSPECT plans stored in the medical records of the general practices who participated in our qualitative study.

Evaluation framework for completed ReSPECT forms

We used a modified version of a tool developed during our previous study of ReSPECT in secondary care.66 This was based on the ethical framework of accountability for reasonableness, which focuses on fair decision-making processes rather than on specific ethical principles.67 The framework stipulates that decision-making should be transparent, based on reasons agreed as justifiable by the relevant stakeholders and open to review.67 The process should be consistently applied to justify the ethical principle of equity. The evaluation tool is structured to answer the following questions:

1. Consistency: what is the variation in content in terms of the detail requested on the ReSPECT form and associated guidelines?68
2. Transparency: how complete is the information about the patient’s preferences, diagnoses, reasons for treatment recommendations and who participated in the ReSPECT discussion?
3. Ethical justifiability: do the reasons for treatment recommendations indicate that clinicians considered the patient’s preferences and clinical conditions, as well as the benefits and burdens of specific treatments? How complete is the documentation of patient capacity and who provided input to completion of the ReSPECT form?

The tool provides a structure for evaluating each ReSPECT form and providing counts of how many ReSPECT forms in the survey meet quality criteria.

Team members CJH, KE, CAH, AS and FG modified the existing tool and associated guidance to take account of changes to the ReSPECT form since our previous study (introduction of version 3). We each independently used the tool to evaluate three completed ReSPECT forms, using a total of eight forms, so several team members evaluated each form. We met to discuss adaptations needed and repeated the process again to ensure each version of our tool provided consistent evaluation of each domain (see Report Supplementary Material 7). The relevant version of the tool was then used to assess each completed ReSPECT form (version 2 or version 3).

Sampling and recruitment

The 13 GP practices identified adults registered with the practice recorded as having a ReSPECT form completed within the previous 12 months. Following eligibility screening, patients or their next of kin if it was known to the GP practice that they lacked capacity, were sent information about the study, that the study involved accessing their medical records and what to do if they did not wish to participate.

Data collection

A study researcher or member of practice staff accessed the records of all eligible patients who did not opt out of the study and identified whether they contained a ReSPECT form. Identified ReSPECT forms were scanned (hard copies) or electronically copied. Data collection took place from February 2021 to January 2023.

Data extraction and evaluation of each ReSPECT form

CJH extracted data and evaluated content of all forms. KE, CAH, AS and FG extracted data and evaluated 25% of the total. To ensure consistency, the team met to compare findings, discuss and resolve discrepancies after evaluating half of the forms and again after evaluating the remaining forms.

Ethics considerations

Data were collected with approval from the CAG (reference 21/CAG/0089). Personal identifiers were redacted prior to transfer to the study team using NHS encrypted e-mail or an encrypted NHS platform. Data were stored in password-protected files on a secure University of Warwick server.

Results

Practices identified 526 patients with a ReSPECT form completed in the past 12 months. Practices excluded 200 patients prior to invitation (see Figure 1) and 17 patients opted out of the study. One practice did not hold any completed ReSPECT forms in patient records. We were unable to retrieve forms from one practice because, in error, 63 recruitment letters were sent without study identification numbers, so it was not possible to accurately record opt-outs. Of the remaining 246 participants, we retrieved 146 (60%) ReSPECT forms. Four forms were excluded because they were completed over 12 months prior to data collection, and one was a duplicate. This left 141 forms for analysis (see Figure 1). Of these forms, 55 (39%) were handwritten and 86 (61%) electronic; 102 (72%) were version 2 and 39 (27%) version 3. Three (version 2) forms were incomplete, with the second page missing. Completion rates for different sections of the form varied (see Appendix 5).

Consistency of recorded decision-making processes

Of the 141 forms, 64 (45%) had a mark on the scale for patient preference [Balance of priorities (version 2)/What matters to me (version 3)]. Over half (81/142, 57%) of the forms recorded free-text personal preferences (54%, 37/68). For people with capacity, this increased to 69% (47/68).

Fifty-three forms (37%) had a clinician signature in one of the CPR recommendation boxes (42/55, 76%) for handwritten forms and (11/86, 13%) for electronic forms). Of the electronic forms, 54/86 (63%) had the CPR recommendation typed in place of a signature.

Most forms recorded free-text recommendations for treatments other than CPR (87%, 122/141) but the focus of the clinical recommendations (extending life/prioritising comfort) was less well recorded (52/141, 35%).

Most forms recorded that the patient or (if the patient lacked capacity) someone close to them was involved in discussing the ReSPECT form content (133/141, 94%).

Most forms (108/141, 77%) recorded the clinician’s role or registration number but less than half (64/141, 45%) included a signature. The senior clinician signature was only present on 14/141 (10%) forms. This may be because of confusion about where the clinician completing the form should sign if they are also the senior responsible clinician (usually the GP).

Confirmation of validity of the form was completed in 11 forms (8%).

Transparency

Nearly all forms (129/1411 92%) recorded the person’s health conditions. Some provided a detailed list of diagnoses; while others used terms, such as ‘frailty’ and ‘decreasing health’ without clarification, or used abbreviations (e.g. ‘AF, CKD, IHD, OA’). Only 27/141 (19.0%) forms documented reasons underpinning the clinical recommendations.

Where free-text personal preferences were recorded, text was often brief and usually referred to a preference for being kept comfortable or remaining at home. More detailed explanations were noted in version 3 forms where the clinician is prompted to record what the person most values and what they most fear/wish to avoid for example:

Values; ‘Being kept comfortable, familiar surroundings, husband and daughter present’. Fears; ‘Hospital admission, uncertainty’.

Most forms recorded free-text recommendations for treatments other than CPR (122/141, 87%). Most (94/122, 76%) provided detailed recommendations on what treatment should be provided in a range of situations, for example: ‘Not for resuscitation. Not for admission under any circumstances, apart for suspected fracture or head injury that requires A&E assessment’, while 28 (23%) gave general instructions, such as ‘Not for hospital admission’. The focus of the clinical recommendations (extending life/prioritising comfort) was less well recorded (52/141, 35%).

Ethical justifiability of recorded decision-making processes

Of the 26 forms where reasons for clinical recommendations were provided, 22 (85%) included a reference to the patient’s wishes. Of these, 6 (27%) did not complete any part of the personal preference section.

Only five forms included a reference in the recommendations to the patient’s condition and ability to benefit from future interventions. We found only one form which explicitly referred to the patient’s preferences and considered the benefits and burdens of treatment.

In 131/141 forms (93%), the person’s capacity was recorded. Version 3 requires clinicians to say in what way the person lacks capacity. Of the 23 relevant forms analysed, 17 (73%) provide a reason which includes in some cases reference to capacity ‘unable to process or retain information’ or a more general reference to the person’s cognitive status ‘dementia’ or ‘cognitive impairment’.

Among the people who lacked capacity, the involvement of someone close to them (relative or friend) was recorded on 39/59 (66%) forms and this person’s name and role was recorded on 25/59 (42%). Whether the person who lacked capacity had a legal proxy was recorded on 45/5 forms (76%).

Summary

Our survey of GPs in England showed that ECTPs are a standard part of GP practice, with 98% (828/841) of respondents using some form of ECTP. GPs overall are supportive of their use, agreeing that they help to ensure that patients’ wishes are known and support patients’ families. However, just over half of survey respondents reported using DNACPR forms rather than a more holistic ECTP that includes other treatment recommendations and specifically acknowledges patient’s preferences and values. Most respondents using a broader ECTP used ReSPECT.

The main trigger for initiating an ECTP conversation is a diagnosis of a life-limiting or life-threatening condition, suggesting that they are considered primarily as anticipating end-of-life events.

While completion of an ECTP in primary care is currently carried out mainly by GPs, respondents thought that a much broader range of health and social care professionals could complete these plans, with a substantial minority of respondents including senior care home staff. GPs who used ReSPECT were more likely to feel comfortable in having these conversations with patients and their relatives.

Only half of GPs reported that their practice had a regular system for reviewing ECTPs despite a similar proportion agreeing that the plan could be out of date at the time it is needed.

Our qualitative exploration of health and social care professionals’ experiences of using ReSPECT showed that ReSPECT is conceptualised as a patient-centred process, allowing patients to have a nuanced discussion about future medical care and treatment decisions and take some control over these decisions, particularly when nearing the end of life. However, it is also clear that a ReSPECT plan is often seen as mainly about CPR, and sometimes interpreted as simply a DNACPR form. Clinicians see ReSPECT recommendation as a guide to decision-making in an emergency, while care home staff see them as a record of a residents wishes, enabling them to advocate on their behalf.

Generally, the ReSPECT process is initiated when a patient changes care context, such as moving to a care home, starts to receive palliative care or a relevant health condition becomes worse. Care home staff want early completion of ReSPECT forms after admission for almost all residents. Careful timing and preparation for a ReSPECT conversation is important to minimise any distress for patients and their families particularly as many see initiation of ReSPECT conversations as acknowledgement of a terminal illness. Care home staff can have an important role in preparing residents and their families for the ReSPECT conversation.

Completion of a ReSPECT plan needs time, sometimes involving several conversations, and should be led by a clinician trusted by the patient. The involvement of families in the conversation, including when the patient has capacity, is seen as important to ensure that families understand the patient’s wishes and to reduce conflict during decision-making in an emergency. The level of uncertainty about a patient’s illness trajectory and future treatment options can affect the type of conversation held and the confidence with which clinicians are prepared to make recommendations.

Processes for storing and sharing completed ReSPECT plans vary across GP practices. There is concern about lack of synchronisation between paper and electronic versions, and forms do not always follow the patient between hospital and home. Paramedics sometimes encounter more than one version of a plan when attending in an emergency.

Participants across the data sets describe challenges in interpreting ReSPECT recommendations in an emergency. This can be because recommendations are poorly written, vague, or not applicable to the situation. Even when recommendations are more detailed there may be differences in interpretation with decisions not always appearing to fit with the recommendations. Clinicians need to make judgements in relation to patient safety guided by, but not constrained by, the recommendations.

The approach to reviewing completed ReSPECT plans varies from no systematic process to routine review as part of an annual review or more frequent review for a few patients.

Our evaluation of completed ReSPECT forms found that most forms contained text about treatment recommendations other than resuscitation, with text about patient preferences recorded on just over half of the completed forms. CPR recommendations were recorded on around two-thirds of forms, but this figure may have been higher if we had been able to see the patient held form. Clinicians rarely recorded their reasons for treatment recommendations on the form. Where reasons were given, these usually referred to the patient’s wishes about hospital admission.

Most completed ReSPECT forms recorded that the patient or someone close to them was involved in the ReSPECT conversation. However, where a patient lacked capacity and so the involvement of a relative/lasting power of attorney holder is expected, only two-thirds of these forms indicated they were involved and fewer than half named the person.

Strengths and limitations

To our knowledge, this is the first survey of GPs’ use of ECTP. We obtained a high-quality data set with no missing data. Although we did not achieve our original target of 1000 respondents, this is still much larger than most GP surveys.69,70 We have sufficient data to produce a precise estimate for all our outcomes of interest and a robust statistical model exploring factors influencing how comfortable GPs are having emergency care and treatment planning discussions. Our respondents were representative in terms of region, age, practice size, years since qualification and region. Nevertheless, using a market research company working through a commercially funded, free to use website for data collection may have introduced bias into the sample selection.

Our qualitative data provide us with evidence of how a wide range of clinicians and carers conceptualise ReSPECT and an in-depth account of how the ReSPECT process is operationalised in general practice and care homes. Recruiting clinicians and carers working in other community/care services and emergency departments was challenging; recruiting more participants may have provided further and different accounts of ReSPECT. We used NPT as a framework for our analysis but to gain traction on the bulk of the data which related to the ‘cognitive participation’ and ‘collective action’, we used the ReSPECT process itself as an analysis framework.

A strength of our evaluation of completed ReSPECT forms is that it evaluates the actual content of ReSPECT forms. However, ReSPECT forms are designed to be held by the patient, we were limited to copies of ReSPECT forms which GP practices had chosen to store in the patient’s clinical notes. Some practices stored electronic copies that did not include signatures, so we do not know what signatures were on the copy held by the patient.