Synthesis of findings
For this synthesis, we started with the analysis framework used for the qualitative data in Chapter 4 and added to it findings from the other chapters. We then identified the consistent messages from across our results and grouped them into themes.
The consistent messages from across our results
The public survey indicates overwhelming support in Great Britain for people being able to have an ECTP.55 Our qualitative results indicate similar support from all participant groups.89 There was consistency in the results related to key issues from across our participant groups. All agreed that ReSPECT provides a valued opportunity for patients to express their wishes to the clinicians making treatment decisions, with parent/carers of people with a learning disability seeing it as a means of reinforcing their voice as an advocate for the person they care for. The qualitative data indicate ReSPECT is commonly understood as primarily about resuscitation, including among patients and their relatives. Its role for providing other clinical guidance particularly for patients nearing end of life is also recognised. Across all data, there was agreement about when to initiate an ECTP such as ReSPECT: when there was worsening health especially if the person had a life threatening or life limiting condition. Family members are willing to be involved in completing ECTPs such as ReSPECT and their involvement is considered important to prepare them for potential medical emergencies, recognising that not everyone wants to involve their family in healthcare decisions. For people with a learning disability the involvement of a family member or carer was seen as essential to advocate for or to support the person in the planning process. The range of health and social care professionals who could lead ReSPECT conversations could be broader than at present, if skilled in communication and trained in the ReSPECT process.
There was concern among the public and all those working in health and social care in the community that ECTPs such as ReSPECT could be out of date. On the use of ECTPs such as ReSPECT in an emergency, the consistent message from the qualitative results was that it was problematic. The public and GP survey both asked about the possibility that having an ECTP might result in someone not receiving lifesaving treatment and substantial minorities agreed. Our qualitative results from GPs and their staff and other participant groups working in community health and social care indicate that completed ReSPECT plans are not always perceived as an important influence on treatment decisions in a medical emergency in the community. This perception has potential to undermine the ReSPECT process in the community.
The role of the ReSPECT form in a medical emergency
The ReSPECT form is designed to assist with decision-making across the whole range of potential medical emergencies that can occur in the community. We first consider the role of ReSPECT in the community when a patient appears to have collapsed.
Our home-based care workers and care home staff provide insight into the experience of staff who are not clinically trained when a person they care for appears to be unresponsive. They know the first decision is whether to start CPR and, here, the recommendation recorded in the ReSPECT form is useful. However, they also need help from a clinician as they do not know the cause of the unresponsiveness and whether it can be treated. A call to the emergency services may elicit the request to start CPR, which creates for them a dilemma if the ReSPECT recommendation is not for CPR. If the patient has become severely ill, care staff need help from a clinician to work out what the problem is before the clinical recommendations on the ReSPECT form become useful. Care home staff experiences of a lack of understanding of their dilemma from GPs and paramedics caused them distress. There was no mention on any of the ReSPECT plans we examined of information about which service care staff, or family, should call in a medical emergency.
Paramedics and emergency department doctors attending patients who have apparently collapsed or become severely ill make their assessment and treat following established clinical pathways taking account of patient safety. ReSPECT plan content rarely provided sufficient justification for deviating from these pathways. Although there was recognition among clinicians and care staff that it is the attending clinician’s responsibility to make the clinical decisions, the perception that the attending clinicians ignored ReSPECT recommendations was a source of frustration for care home staff. However, those who completed ReSPECT plans struggled with what to write in the plan that might help the decision-making of the clinicians attending their patient in an emergency. For the attending clinicians knowing patient preferences was valued.
For the ReSPECT process to continue with support from the public, patients, families, clinicians and care staff, we need to find out if it is possible to ensure the content of a completed ReSPECT plan is useful in medical emergencies in the community, and if so, how.
Control of the sharing of ReSPECT forms
The ReSPECT form was designed to be patient held. Our survey results suggest widespread understanding of the role of the ReSPECT plan in ensuring clinicians know the patient wishes. For this to happen, the patient must share the ReSPECT plan with the relevant clinician. There are patients and families who understand this, perceive the plan as having considerable power to influence treatment decisions and actively control access to their patient-held ReSPECT plan, making it accessible or inaccessible to other people. Patients and families active in managing their ReSPECT plan are likely to ensure that it is up to date. Our results indicate that some patients do ask for the plan to be updated. Some patients and families appear not to be active in controlling the sharing of the ReSPECT plans. There is some evidence that they forget about them. Clinicians and care home staff expressed concern that repeated reference to emergency care treatment planning through regular review could cause distress for patients and families who prefer not to think about their plan.
Based on their experience of lost, out of date or inaccessible forms clinicians and care staff felt an electronic form available to all relevant health and care staff would solve the problem of form accessibility and validity. However, this would affect patient control of the form. Our qualitative results include concern that people can change their mind as their circumstances, including their health status, changes. Both surveys identified the risk of the form being out of date.
The tension between patients/families maintaining control of their completed ReSPECT plans and the need for clinicians and care staff to access the plan when needed is a challenge for the current ReSPECT process.
Patient preferences recorded on ReSPECT form
There was agreement on the value of patient preferences recorded in the ReSPECT plan and the importance of clinicians knowing the patient’s wishes when making treatment decisions. People with a learning disability emphasised not only patient wishes but also clinicians knowing what was important to and about the person to minimise clinician bias when making emergency treatment decisions. However, among completed ReSPECT forms we evaluated, we found completion rates of the patient preference scale were under half, and completion of free text preferences only just over half. When text was recorded it usually referred to being kept comfortable and place of death. Our qualitative results suggest the preference scale was not always useful. The public focus groups drew out the tension between the need for text to be brief to be read in an emergency, and the need to communicate details about preferences. Care home staff and GPs talked about ACPs or other care plans holding more detailed information about patient preferences.
Together, these results suggest that, apart from patients on a relatively clear trajectory towards death when options are limited, expressing preferences about medical treatment is not straightforward, which may in part be because the options are not clear. This is a challenge for the ReSPECT process in the community. However, version 3 of the ReSPECT form, which prompts clinicians to record what the patient most values and what they most fear/wish to avoid may have gone some way to meeting this challenge as clinicians had recorded more detail on these forms than on version 2. However, our sample included few version 3 forms and our other data did not distinguish versions of the form.
Clinical recommendations and reasoning recorded on the ReSPECT form
Most of the ReSPECT forms we evaluated contained some detail in the clinical recommendations text box and recorded whether the patient was recommended for CPR. However, clinicians who wrote clinical recommendations talked about their struggle with this, in part because of the wide range of possible medical emergencies that could arise in the community.
The prospect of writing clinical recommendation text influenced the timing of some ReSPECT conversations, as over time as a patient’s health deteriorated, treatment options reduced, and patients and families came to terms with the patient’s condition. However, not having a ReSPECT plan risks patients having difficult treatment experiences including CPR.
Very few ReSPECT forms we reviewed included explicit reasons for the treatment recommendations made with reference to the patient’s condition and ability to benefit from future interventions. Only one included patient preference in their reasoning about benefits and burdens of treatment. Our qualitative data suggest that the ReSPECT process is challenging, and clinicians need training to do it well. In the public survey, one-quarter of respondents wanted a clinician who did not know them but was trained in making ECTPs to complete the plan with them. This minority view suggests a dilemma about whether a clinician who knows the patient well, or one that is highly trained in ReSPECT, is best placed to undertake the ReSPECT process.
In the community, the completion of medical recommendations in ReSPECT plans is challenging because of the level of medical uncertainty around future clinical events and treatment options. This uncertainty reduces as someone’s disease trajectory progresses or they near the end of their life, but waiting to complete a ReSPECT plan until this medical uncertainty is reduced risks increased treatment burdens for patients. A further challenge is to bring together medical uncertainty and patient preferences for weighing of benefits and burdens to make clinical recommendations.
Patient trust and ReSPECT
Across our data there was agreement that the person holding a ReSPECT conversation with a patient needed good communication skills and to establish a trusting relationship. Although half of the members of the public surveyed indicated they would want their GP to complete an ECTP with them, other results suggest a wide range of types of professionals who could hold ReSPECT conversations. What was important was a trusting relationship between the professional and the patient.
Qualitative results from our patients/relatives’ interview data indicate they trust that the recommendations on the ReSPECT form would be followed which other results suggests is not necessarily the case. Parent-carers of people with learning disabilities were less trusting that preferences would be followed based on their past experiences of clinical decision-making in an emergency. The public focus group results remind us that patients have little choice but to trust the clinician in a medical emergency and the health service to provide the most appropriate care.
The ReSPECT process requires trust between patients, their families and clinicians but also trust between different healthcare professionals. Engendering patient trust in the ReSPECT process depends on patients and public trusting the health system more generally.
Stakeholder meeting
In March 2023, we held a stakeholder meeting to present key issues arising from our preliminary analysis and seek input from a wider group of stakeholders on how ReSPECT should be used in primary care and the community.90
Methods
We invited to the meeting representatives of patient and carer support organisations, community and faith groups, relevant professional organisations, clinical leads for end-of-life care, commissioners and policy-makers, practitioners implementing ReSPECT in the community and members of the national ReSPECT working group. There were 47 attendees, including 29 external delegates, 12 members of the study team, 3 members of our lay advisory group and 3 members of our learning disability reference group (see Appendix 7)
Prior to the meeting, the research team reviewed initial study findings, identified key issues to present at the workshop and wrote formal presentations. We identified audio data excerpts from interviews/focus groups that were emotionally significant and edited them together into an audio file to play during the meeting.
Meeting participants were sent introductory material about the project (see Report Supplementary Material 11) and questions that we planned to pose during small group sessions to be held in the meeting (see Report Supplementary Material 12). Members of the research team acted as facilitators and scribes during the small group sessions. We held a training session to ensure all team members were familiar with small group processes including facilitating contributions from all attendees.
The meeting began with formal presentations of the key issues from the study data analysis. We then held a mix of plenary and small group discussions (see Report Supplementary Material 13). Small groups were preplanned to ensure a mix of backgrounds of group members, gender balance and at least two PPI contributors in any one group. The small groups were asked to tackle the questions posed for the meeting in a preplanned order to ensure that there was time for in depth discussion of all questions across the groups. Groups were able to view examples of anonymised text from actual ReSPECT forms to inform their discussion. Small groups reported back to the plenary session focusing on: (1) key points arising from discussion of the questions posed and (2) suggested recommendations for the ReSPECT process.
Scribes took notes of the discussions and the key points and recommendations agreed by the group were recorded on flip charts to present in the plenary sessions. Following the meeting the scribes’ notes and the flip chart content were collated and analysed to identify key messages. A summary of the meeting’s findings was drafted and sent to all attendees who were able to provide comments after which the report was finalised.
Outcomes of meeting
We present here a brief synopsis of key messages; the full report is available in Appendix 8.
Stakeholders reflected on the broad question of whose interests are being served during the ReSPECT process. The consensus across all groups was that the ReSPECT process should serve the interests of the person whose plan it is first and foremost. However, they acknowledged a tension between a process that is person centred and a set of recommendations that are intended to guide or direct clinicians. They also noted that the process could be in the interests of the person’s family, reducing the burden for them at the time of decision-making.
Initiating the conversation
Stakeholders thought it was important that ReSPECT planning should not only be considered in the context of end of life or palliative care. They suggested other potential triggers for initiating a ReSPECT conversation, for example, when a person has specific risk factors for severe acute illness, or during regular reviews of someone with a chronic disease. They distinguished between conversations to prepare someone for discussion of a plan and the planning conversation itself, suggesting that preparation conversations can be initiated by a wide range of people, with appropriate training and support.
Having and recording the conversation
Stakeholders identified several challenges that could occur in the process of the ReSPECT conversation, including lack of time to have what is a difficult and complex conversation. A strong message from the meeting was that ReSPECT conversations needed to be open and honest, and that the healthcare professional should take time to understand what was important to the person and what their preferences were. For good conversations to occur, communication challenges needed to be considered, such as language barriers, and alternative formats for the form. There was a consensus that a digital version of the form was the preferred option to ensure accessibility.
Articulating and interpreting recommendations
Stakeholders agreed it was important that recommendations, including the reasons for them, were understandable to the person and their family and to the health and social care professionals who interpret them in the emergency situation. As it is not possible to cover all potential scenarios, emphasis was placed on the need to carefully document the person’s values and preferences and for healthcare professionals to take account of these when interpreting recommendations. Stakeholders noted the difference between hospital completed recommendations, which were specific to hospital-based scenarios, and primary care-based recommendations, highlighting the need for review as a person moves between healthcare settings.
Training and raising awareness of ReSPECT
Stakeholders agreed that there is a need for training around the whole ReSPECT process from preparatory discussions through to use of the form in an emergency, with training content and format being tailored to the needs of the different groups of health and social care professionals who may be involved in the ReSPECT process. They highlighted the importance of training in interpreting ReSPECT recommendations in an emergency. Examples of training content and format were provided. There was consensus in the meeting of the need to raise awareness of ECTPs including ReSPECT within the general population.