Authors' objectives: Emergency care treatment plans provide recommendations about treatment, including cardiopulmonary resuscitation, to be considered in emergency medical situations. In 2016, the Resuscitation Council United Kingdom developed a standardised emergency care treatment plan, the recommended summary plan for emergency care and treatment, known as ReSPECT. There are advantages and potential difficulties in initiating the ReSPECT process in primary care. Hospital doctors and general practitioners may use the process differently and recommendations do not always translate between settings. There are no large studies of the use of ReSPECT in the community. Emergency care and treatment plans (ECTPs) focus on treatment and care in emergency or acute illness situations. Their aim is to make treatment recommendations that reflect the person’s preferences and values. They are reached in discussion with the person or their family. The recommendations made are intended to guide future treating clinicians. ECTPs were developed in response to problems identified with standalone ‘do not attempt cardiopulmonary resuscitation’ (DNACPR) recommendations and aim to prompt wider considerations of treatment and care, including cardiopulmonary resuscitation (CPR), to provide a more holistic approach to anticipatory decision-making for emergencies. In 2016, implementation of the ‘recommended summary plan for emergency care and treatment’ (ReSPECT) began in NHS acute trusts and later extended into primary care. There may be advantages to initiating the ReSPECT process in primary care. People may have an established relationship with their general practitioner (GP) and conversations can occur over an extended period. Also, they are often less sick and able to engage in discussion, with recommendations placed in a wider context of advance care planning. However, there are also potential difficulties; individuals and their families may be reluctant to think about these decisions until a crisis emerges, GPs may be uncertain about hospital-based interventions, and both may have concerns about the effect of these discussions on the patient–doctor relationship. An evaluation of ReSPECT in early adopter NHS acute trusts sites in England found ReSPECT conversations were mainly initiated with patients nearing the end of their life or at imminent risk of deterioration. Doctors’ uncertainty about a patient’s prognosis, time constraints and the desire to minimise patient distress influenced both the prioritisation and content of conversations. GP focus groups suggested that hospital doctors and GPs use the process in different ways and recommendations do not always translate from one setting to another. A West of England interview study with GPs and care home staff found a generally positive attitude to ReSPECT but noted that its use was complex and there were challenges in incorporating patients’ preferences into decision-making. There are no large UK studies of the use of ReSPECT or other ECTPs in the community. To understand how ReSPECT is currently used in primary care from the perspective of patients, their families, clinicians and care home staff, and to identify enablers and obstacles to the implementation of ReSPECT in primary care practice To describe the views of the public and other health and social care professionals who encounter ReSPECT plans initiated in primary care, on ECTPs and ReSPECT in particular To explore the impact of ReSPECT on patient treatment decisions To understand how health and social care professionals can optimally engage people with learning disability in the ReSPECT process To develop a consensus on how ReSPECT should be used in primary care.

Authors' results and conclusions: Members of the public are supportive of emergency care treatment plans. Respondents recognised benefits of plans but also potential risks if the recommendations become out of date. The ReSPECT plans were used by 345/842 (41%) of general practitioner survey respondents. Those who used ReSPECT were more likely to be comfortable having emergency care treatment conversations than respondents who used standalone ‘do not attempt cardiopulmonary resuscitation’ forms. The recommended summary plan for emergency care and treatment was conceptualised by all participants as person centred, enabling patients to have some say over future treatment decisions. Including families in the discussion is seen as important so they know the patient’s wishes, which facilitates decision-making in an emergency. Writing recommendations is challenging because of uncertainty around future clinical events and treatment options. Care home staff described conflict over treatment decisions with clinicians attending in an emergency, with treatment decisions not always reflecting recommendations. People with a ReSPECT plan and their relatives trusted that recommendations would be followed in an emergency, but carers of people with a learning disability had less confidence that this would be the case. The ReSPECT form evaluation showed 87% (122/141) recorded free-text treatment recommendations other than cardiopulmonary resuscitation. Patient preferences were recorded in 57% (81/141). Where a patient lacked capacity the presence of a relative or lasting power of attorney was recorded in two-thirds of forms. The aims of ReSPECT are supported by health and social care professionals, patients, and the public. Uncertainty around illness trajectory and treatment options for a patient in a community setting cannot be easily translated into specific recommendations. This can lead to conflict and variation in how recommendations are interpreted. Attitudes and experiences of the public around ECTPs Focus groups Twenty-one members of the public participated in four groups. Participants supported the concept of ReSPECT and thought it could be an important tool in facilitating conversations about end-of-life care. However, they thought the process and form should be more person centred. Participants thought conversations would work best when the person had an established relationship with the health professional but recognised that this was not always possible. They thought that involving the family in ReSPECT discussions was important but expressed concern about whether the plans would be available or followed in an emergency. The concept and aims of ECTPs including ReSPECT are widely supported by health and social care professionals, patients and the public. There is a lack of consensus on the purpose and authority of recommendations recorded in a ReSPECT plan. Patients, families and some healthcare professionals see them as determinative, while others see them as guidance. Preparatory conversations before a plan is introduced are important, particularly for people with a learning disability. The level of uncertainty around future clinical events and treatment options for someone in a community setting cannot be easily translated into specific recommendations, and recommendations recorded in hospital are often seen as unhelpful. This can create conflict when treatment decisions are made in an emergency. There are challenges to ensuring timely access to ECTPs by the health and social care professionals who are making treatment decisions. We identified five priorities for future research: Understanding the experiences and perspectives of people from minority ethnic and faith-based communities on the concept and use of emergency care treatment plans. Improving integration of patient preferences into treatment decision-making in an emergency in a way that is consistent, transparent and ethically justifiable Understanding the experiences and perspectives of paramedics on the use of emergency care treatment plans. Identifying effective interventions for increasing awareness of and preparation for emergency care treatment planning. Identifying the benefits and challenges of a shared electronic record system for emergency care treatment plans.

Authors' methods: A mixed-methods approach using interviews, focus groups, surveys and evaluation of ReSPECT forms within an analytical framework of normalisation process theory. A total of 13 general practices and 13 care homes across 3 areas of England. General practitioners, senior primary care nurses, senior care home staff, patients and their relatives, community and emergency department clinicians and home care workers, people with learning disability and their carers. National surveys of (1) the public and (2) general practitioners. Recruitment for patient/relative interviews was less than anticipated so caution is required in interpreting these data. Minority ethnic groups were under-represented across our studies. We used a mixed-methods approach within an analytical framework of normalisation process theory. Qualitative data were analysed thematically. Descriptive analyses of quantitative data are presented with regression analyses for some outcomes. Work package 1 We interviewed GPs and other practice staff, patients with a ReSPECT plan and/or their families and care home staff. We worked with 13 general practices and associated care homes across 3 areas of England.

Project Status: Completed

URL for project: https://www.journalslibrary.nihr.ac.uk/programmes/hsdr/NIHR131316

Year Published: 2024

URL for published report: https://www.journalslibrary.nihr.ac.uk/hsdr/NVTF7521

URL for additional information: English

English language abstract: An English language summary is available

Publication Type: Full HTA

Country: United Kingdom

DOI: 10.3310/NVTF7521

Organisation Name: NIHR Health and Social Care Delivery Program

Contact Name: Rhiannon Miller

Contact Email: rhiannon.m@prepress-projects.co.uk