Parts of this chapter are reproduced with permission from Eli et al.71 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/
Introduction
At the heart of the ReSPECT process is a conversation between a clinician and a patient, a patient and relative(s) or a relative of a patient who lacks capacity. The conversation aims to facilitate shared decision-making about planning for treatments wanted and unwanted in a future emergency.72 Yet, despite the centrality of patients and relatives, little is known about how they experience ReSPECT. Only one previous study has examined patient and relative experiences of ReSPECT conversations.8 The study, in hospitals in England, found that during an acute admission, patients and relatives often felt unprepared for ReSPECT conversations, were confused about what the conversation meant, and were unsure about how ReSPECT would influence their future care.8 No research has explored how patients and relatives experience ReSPECT in community contexts.
In this chapter, we report on interviews with patients, the relatives of patients without capacity, and patient and relative pairs to explore how they experienced the ReSPECT process, and what enablers and obstacles to the implementation of ReSPECT in primary care were revealed in these experiences.
Methods
Participant recruitment
Patients who had a ReSPECT plan completed in the previous 12 months were identified by the 13 GP practices who participated in the study (see Figure 1). Eligible patients and the next of kin of patients without capacity were sent information letters. Interested patients and relatives sent expressions of interest, which we followed up with an introductory phone call and a detailed information sheet and consent form (by e-mail and/or post); patient participants were told they could invite a relative to accompany them during the interview. Consent was taken before each interview, either written (in-person interviews) or verbal (telephone interviews). For verbal consent, the researcher went through the consent form with the participant, documenting their consent for each item. A copy of the completed consent form signed by the researcher was sent to each participant following the interview.
Data collection
We developed semistructured interview topic guides (see Report Supplementary Material 5). The questions were designed with reference to the NPT framework and focused on understandings of the ReSPECT process and form (coherence), narratives of the process from first consideration to completion and updating (collective action), views of the process (cognitive participation), experiences of the ReSPECT conversation and expectations as to how ReSPECT might be used (reflexive monitoring).
Participants were interviewed either in person or by telephone, depending on their preference. The interviews were conducted by one of three researchers (JH, CJH, KE) and were audio-recorded and professionally transcribed.
During the consent process, participants were asked if they could be contacted for a follow-up interview. If participants agreed, we checked with their GP surgery, at least 6 months after the first interview, if they could be approached. We then contacted eligible participants to ask if they would agree to an interview. Follow-up interviews were semistructured and were conducted by JH, KE and CJH by telephone. These interviews explored whether there had been changes in the patient’s health, whether the ReSPECT form had been used or reviewed, and whether the participant’s views of ReSPECT had changed.
Analysis
We initially intended to use framework analysis. The smaller than expected sample size meant inductive thematic analysis was more appropriate. KE coded the first interview transcripts using a semantic and latent approach to capture both direct and implied meanings.73 Providing intercoder reliability, JH and CJH analysed between them eight interviews. After abstracting from initial to higher order codes, KE drafted candidate themes and met with CJH and JH to discuss these. Following their discussion, the themes were refined and critically reviewed and approved by the research team.
KE read through the follow-up interview transcripts, to ascertain whether participants reported any changes and whether ReSPECT had been used, either of which prompted further analysis.
Findings
Descriptive findings
Study sample
We identified 461 people who had a ReSPECT plan completed in the past 12 months. After excluding those no longer registered with the practice, for whom there were no relative contact details, or who had died 366 were eligible (see Figure 1).
For the interviews, we included people who had a ReSPECT plan completed in the previous 6 months (N = 164). Invitation letters were sent to 94 patients and 70 relatives of people lacking capacity. A total of 15 responses were received (10 patients and 5 relatives), of which 13 led to an interview; 1 person did not remember they had a ReSPECT form, and one could not be contacted (see Appendix 6 for interviews by study area).
We included six patients, four relatives and three patient and relative pairs, where the patient had capacity and chose to be accompanied by a relative who also participated; eight women and five men, 53–93 years (median = 83); nine resided at home and four in a care home.
Four patient participants said they had initiated the ReSPECT discussion with a healthcare professional; in eight cases, a health or social care professional initiated the discussion with the patient or their relative due to a change in health or care circumstances; in one case it was unclear who initiated. Nine participants or participant pairs said they had a ReSPECT conversation with a healthcare professional (five GPs, three nurses, one physiotherapist), whereas four said they did not. This included one participant whose ReSPECT form was completed in hospital, one participant pair who recalled their treatment preferences but not a discussion, and two relatives of patients without capacity who said they had not been included in ReSPECT conversations held with these patients.
Follow-up interviews
Six follow-up interviews took place: four with patients and two with relatives. Seven participants did not take part in a follow-up interview: four died (two had not consented for us to contact their next of kin, one had died recently so we did not contact their relative, and we could not locate contact information for the fourth participant’s next of kin); one did not consent to a follow-up interview; one declined; and one participant’s GP advised against contacting them.
In the six follow-up interviews, four participants said they did not experience a major change in health and their ReSPECT form had not been used in the intervening months. One patient participant said he had been attended by ambulance staff; he recalled they asked about his ReSPECT form and thought they took photographs of it but was unsure whether his ReSPECT form had travelled to hospital with him or been used (patient 11). One relative participant said that ambulance staff had attended her mother several times, in which they either asked about ReSPECT or she mentioned her mother had a ReSPECT form; she said the ambulance staff looked at the form only once, because she described the recorded recommendations to them in all other instances (relative 9). One patient participant said she would like to change her ReSPECT form to indicate her preference for dying in a hospice rather than at home (patient 4). No participant reported changes in their views of ReSPECT.
Feedback on improving the ReSPECT process
In both the first and the follow-up interviews, participants were asked how the ReSPECT process could be improved. Their recommendations included making patients/relatives aware of ReSPECT earlier in the disease process; timing the ReSPECT conversation sensitively; ensuring that the ReSPECT conversation has nuance and that decisions are not presented as binary; reviewing the form regularly and making sure people understand the use and limitations of ReSPECT.
Thematic findings
Patients and their relatives perceive ReSPECT as an end-of-life or do not attempt cardiopulmonary resuscitation form
While most participants knew that ReSPECT included information about treatment options beyond CPR, such as future hospital admission, they spoke of ReSPECT as a DNACPR or end-of-life form. This reflected the timing of ReSPECT conversations for these participants: some initiated the conversation to record their wishes for palliative care or not to have CPR, while others had the ReSPECT conversation initiated by healthcare professionals upon receiving a life-limiting diagnosis or moving to a care home.
This perception of ReSPECT could be both an enabler and an obstacle. Some participants felt positively about this framing, saying they found it reassuring to have their preferences for DNACPR or end-of-life care recorded. One patient characterised ReSPECT as an ‘upgraded DNR’, and spoke about proactively seeking to record their preferences on the ReSPECT form: ‘I don’t want my body to be resuscitated and I believe that if my heart stops that’s the Lord’s time, he knows the number of my days and I don’t want to be brought back to life’ (patient 8).
Another completed the ReSPECT form with their palliative care nurse, with a focus on comfort care:
[M]y view was that I didn’t want any intervention at end of life. So, when end of life arrived … that process would broadly be allowed to happen without any attempt to slow it down at all. All focus being on comfort rather than on, on time to slow that process down. And that was my desire at the start of the form and remained my desire at the end of the form.
Most patient participants spoke of ReSPECT as allowing them to maintain their quality of life and die naturally. However, for one patient framing the ReSPECT form as an end-of-life document meant coming to terms with their prognosis. They described being approached by healthcare professionals multiple times before agreeing to have a ReSPECT conversation:
At first, you know, when she [the GP] was saying about filling it in, I said, ‘Oh, I don’t feel I’ve got to that stage yet’. And she said, ‘Well, the thing is, if you fill it in before you get to that stage, it takes some of the pain out of it, as it were, the emotional pain’.
Some patients and relatives know how to use the ReSPECT form, while others do not
Although the ReSPECT form is patient held, not all participants knew how it would be used in an emergency – a key obstacle to ReSPECT implementation. Some participants kept the form at home but were not aware they had to store it in an easily available location; this dovetailed with misunderstandings of how ReSPECT would be used. The interview with one patient and relative began with the patient participant rummaging through a drawer to find the form. Later in the interview, when asked how ReSPECT would be used, the patient participant said, ‘He didn’t tell me anything. I mean I, I don’t know whether the, the hospital knows or what, I don’t, I don’t know’ (patient 11). Another patient and relative interview began with the patient participant looking for the form and mistaking other forms for ReSPECT. Later in the interview, it transpired that both the patient participant and his wife did not know how ReSPECT would be used; indeed, they turned the question back to the researcher, asking her, ‘What would happen with the form?’ (relative 13). When the researcher asked them ‘did they [healthcare professionals] explain that to you?’, the patient participant said, ‘No, they didn’t, no’.
Other participants kept the form in an easily accessible place, having been told to do so by healthcare professionals, as one patient explained: ‘they [healthcare professionals] said if, if anyone was called to the house, 999 or something, to keep this form in a place where we could show it to them’ (patient 4). Another participant provided a detailed description of how she stored the form to maximise accessibility:
I’ve got one copy in my purse that I take with me everywhere I go and I’ve got this other copy in the fridge in the Lions emergency green ... are you familiar with those green boxes and that you put in the fridge? And there’s a sticker on the front door of the flat so if the paramedics come they, they recognise that and they go look in the fridge.
Patients trust and value the ReSPECT process and recognise that it implicates their family’s well-being
The patient participants expressed trust that the ReSPECT form recommendations would be followed. For example, when one patient was asked if she thought healthcare professionals would follow the recommendations in her daughter’s absence, she said: ‘Well, they’ve got the form to read, haven’t they? (Researcher: yeah.) And I think … they would carry out what it says’ (patient 5). Participants also valued the opportunity to express their wishes and have these recorded. ‘I’m happy about it because … it was my, my decision and I thought about it, in fact, I’d been thinking about for, oh, quite a while’ (patient 5). However, participants described a ReSPECT plan as helpful not only to patients but also to families. Some said it allowed them to relieve their relatives’ future decision-making burden. For patient 12 ReSPECT was about having things ‘in writing [so] that people know my wishes’ but also about ‘[t]aking a bit of the responsibility away from my daughters’. Patient participants also said that ReSPECT provided clarity and would help their relatives advocate for them in an emergency: ‘she [daughter] knows exactly what has been wrong with me and what my wishes are if anything happens to me. And I think it puts her mind at rest’ (patient 5).
Other patient participants said that having their treatment preferences recorded on a ReSPECT form would reduce their family’s future caring responsibilities: ‘if my heart stops I don’t want to be resuscitated and I don’t want to be a burden on my family and surrounding family members’ (patient 5).
While patients considered their relatives’ emotional well-being, they did not backtrack if their relatives disagreed with their preferences. In some cases, participants negotiated with relatives while asserting their own decision-making agency. For example, when the relatives of one patient opposed her preference, she held several conversations with them: ‘as we’ve talked about it two or three times, they, I think, have understood why I’ve, I did it, why I did have a ReSPECT and put “DNR”. So we’re not in conflict’ (patient 4).
The ReSPECT conversation shapes patients’ and relatives’ experiences
The quality of the ReSPECT conversation was pivotal to participants’ experiences and understandings of the ReSPECT plan and thereby to enabling its implementation. The participants who described positive experiences had an open discussion with a healthcare professional, where the ReSPECT plan was clearly explained, and where they felt listened to and able to express their wishes. For example, patient 5 characterised her ReSPECT discussion as ‘a proper two-way conversation’.
Participants who described negative experiences of the ReSPECT process said that they either felt unprepared for the conversation or did not have a conversation. One participant, whose ReSPECT form was completed in hospital while they were acutely unwell, recalled the doctors speaking about her, but not to her, and positioned ReSPECT within a wider story of being treated in hospital as if she did not have capacity: ‘they were having conversations with the, there was a student there, and a nurse and they were talking to themselves, they weren’t talking to me’ (patient 7).
In two other examples, relatives of patients who did not have capacity said that ReSPECT conversations were held with the patients at their new care homes without involving them. Both said they were surprised to discover a ReSPECT form had been completed. One described ReSPECT as, ‘something I felt I had to, sort of, piece together for myself’ (relative 10), saying that the care home staff did not explain ReSPECT to her formally until the later stages of her mother’s illness. The other felt that, ‘I should have been there, and I should have been told about it before’ (relative 6). This permeated their perceptions and experiences of ReSPECT. Although both agreed with the recorded recommendations, they felt negatively about the process and equated having a ReSPECT form to the patient being labelled ‘end of life’ or no longer wishing to live.
Participants who had a positive conversation experience expressed a good understanding of the ReSPECT review process. For example, patient 4 described being ‘very impressed’ by healthcare professionals’ responsiveness to her expressed wish for palliation. She also said that her healthcare team clarified the form could be changed – an option she was actively considering at the time of interview, noting that ‘they’ve put a phone number on it’, which she could call to communicate a change in her preferences. By contrast, relative 1, who described feeling ‘thrown’ by the ReSPECT conversation, said she was unaware the form could be changed and first learnt about the possibility of review during the interview.
Summary
Patients’ and relatives’ experiences of the ReSPECT process were shaped by the ReSPECT conversations they had with healthcare professionals. Participants who had an open discussion with a healthcare professional, where they felt listened to and received clear explanations, spoke about ReSPECT positively. This influenced participants’ understandings of ReSPECT, which in turn either enabled or constrained implementation: those who had positive conversation experiences showed a good understanding of ReSPECT and of how the form may be stored, used and reviewed, while those who did not tended to have a poorer understanding of the process.
Across the sample, patients and relatives associated ReSPECT conversations with DNACPR and end-of-life planning, but this did not necessarily present an obstacle to implementation. The participants expressed trust that, in an emergency, healthcare professionals would follow the recommendations recorded on the ReSPECT form, a key enabler of ReSPECT implementation.
Although participants valued patients’ decision-making autonomy, they conceptualised ReSPECT as affecting family members’ well-being, with patients trying to reduce their relatives’ decision-making burden, help relatives advocate for the patient and decrease future caregiving responsibilities. This underscored the importance of family considerations in enabling ReSPECT implementation in primary care.
Strengths and limitations
A strength of this study is that it includes the voices of patients and their relatives who have had a ReSPECT plan completed in the recent past mitigating problems with recall. The patient voice adds richness to the overall qualitative analysis of how ReSPECT is used and experienced in primary care. However, the small number of participants recruited means that their views and experiences may not be a reflection of the wider patient population with a ReSPECT plan in place.