Background: 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.
Study aim: To evaluate how, when and why ReSPECT is used in primary care and what effect it has on patient treatment and care.
Design: A mixed-methods approach using interviews, focus groups, surveys and evaluation of ReSPECT forms within an analytical framework of normalisation process theory.
Setting: A total of 13 general practices and 13 care homes across 3 areas of England.
Participants: 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.
Results: 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 Respondents recognised benefits of plans but also potential risks if the recommendations become out of date.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.
Limitations: 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.
Conclusions: 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.
Future work: Future research should explore how best to integrate patient values into treatment decision-making in an emergency.
Study registration: This study is registered as NCT05046197.
Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR131316) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 42. See the NIHR Funding and Awards website for further award information.
Keywords: ADVANCE CARE PLANNING; DNACPR; ETHICS; EVALUATION; LEARNING DISABILITY; MIXED-METHODS STUDY; PERSON CENTRED CARE; TREATMENT ESCALATION.
How, when and why ReSPECT plans are made and used outside hospital and how they affect patient care. We listened to general practitioners, patients and their families, and examined ReSPECT plans in patient records. We listened to staff in care homes, homecare workers and other healthcare professionals. We surveyed general practitioners and the public. We worked with people with a learning disability to find out what support they needed to complete a ReSPECT plan. People thought that ReSPECT plans could be a good way to record a person’s wishes about medical treatment. They thought that the plan should be made with a healthcare professional they knew and trusted. These conversations need time and preparation, especially for someone with a learning disability. Most people thought family involvement was important. General practitioners told us that it could be difficult to know what kind of emergencies and treatments to discuss and put in the plan. Most plans we looked at had recommendations about cardiopulmonary resuscitation and many plans had recommendations about other treatments. About half of plans recorded the patient’s wishes. It was not always clear who the plan had been discussed with to find out their wishes. Care home staff told us that they were often frustrated when healthcare professionals in an emergency did not always follow the plan. Further research is needed on how to improve ReSPECT conversations so that plans clearly reflect what is important to the individual, and how to help health professionals use ReSPECT when an emergency happens.