Karin Eli

Background: The PROTECTeD study sought to develop an evidence-based termination of resuscitation guideline for use within United Kingdom ambulance services. Methods: This mixed-methods study comprised several work packages: Work package 1 – diagnostic test accuracy meta-analysis of termination of resuscitation rules Work package 2 – modelling performance of termination of resuscitation rules using data from the Out of Hospital Cardiac Arrest Outcomes registry Work package 3 – review of ambulance service practices Work package 4 – qualitative interviews with ambulance clinicians, emergency department clinicians and relatives of non-survivors Work package 5 – stakeholder consensus conference to develop a new termination of resuscitation guideline. Results: We described the performance of 42 different termination of resuscitation rules. Our meta-analysis suggests the best performing termination of resuscitation rule is the Universal termination of resuscitation. We modelled the performance of 29 termination of resuscitation rules and found that none would be suitable for implementation within a United Kingdom context. We identified significant variation in how the termination of resuscitation guideline was implemented across the United Kingdom (UK) ambulance services. Ambulance clinicians experience conflict between what the guideline permits them to do and being able to act in the patient’s best interest. They felt obliged to follow the guideline. Most emergency department staff believed that paramedics should be empowered to stop resuscitation where appropriate. However, some felt that more senior emergency department clinicians should make these decisions. Relatives needed to be informed about the resuscitation attempt and must feel confident that every effort had been made to save their relative. They also believed that they were able to provide useful information to inform paramedic decision-making. We drafted a new termination of resuscitation guideline in conjunction with clinical experts and multiple stakeholders at a consensus conference. We employed nominal group techniques to determine content and formulate treatment recommendations. Discussion: Termination of resuscitation decisions are complex, requiring consideration of several important aspects, including what is in the patient’s best interest. Our work suggests that the current ambulance guideline may restrict the paramedics ability to act in the patient’s best interest, increasing the potential for moral injury. Conclusion: Paramedic decision-making is informed by both clinical and best interest considerations. Relatives are confident that paramedics do everything possible to save their loved one, and they are able to provide paramedics with information to guide decision-making. We developed a new evidence-based termination of resuscitation guideline, employing nominal group techniques, in collaboration with multiple stakeholders. Limitations: The evidence comprises observational studies that must be interpreted with caution. We captured the views of multiple stakeholders and patients with personal experience of cardiac arrest. Their insights may not be representative of the wider population who have not had the same experience. Future work: Future research should encompass alternative predictors of poor outcome (e.g. clinical frailty) as well as technology (e.g. ultrasound) to enhance decision-making. Better understanding of how cardiac arrest transport decisions impact system performance and crew safety would be helpful. Little is known about paramedic decision-making in relation to unfavourable neurological outcome rather than fatal outcome. Paramedics may benefit from a decision-making framework. Funding: This synopsis presents independent research funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme as award number 17/99/34.

Background and Aim: In the United Kingdom, mental health and maternal health are now key priorities for research among adults with congenital heart disease. However, worldwide, research on the mental health of pregnant and postpartum women with congenital heart disease is scant, and no UK‐based participatory studies on the topic have been conducted. Our research aim is to explore the mental health experiences and needs of UK women with lived experiences of pregnancy and congenital heart disease. Methods: We conducted a qualitative participatory study, in which women with lived experiences of congenital heart disease, pregnancy, and birth participated in a series of semi‐structured online group discussions focused on their mental health experiences and needs and on co‐designing future research on the topic. Discussions were recorded and automatically transcribed; transcripts were analysed using inductive thematic analysis. Results: Eleven women with a range of congenital heart disease diagnoses and experiences took part. Five themes were developed through the analysis: women with congenital heart disease (1) feel they have very little control over preconception‐, pregnancy‐, and birth‐planning; (2) experience anxiety around pregnancy and childbirth; (3) feel that experiencing a high risk, complex pregnancy can be isolating; (4) experience complex relationships with healthcare professionals during pregnancy; and (5) need more postpartum support. A thread running through the first four themes is the need for additional support during the pregnancy journey, in both healthcare and social contexts. Conclusion: Distress and anxiety were common experiences during preconception, pregnancy, and the postnatal period. These experiences were exacerbated by wider relational and systemic stressors, namely, social isolation, traumatic healthcare experiences, and lack of psychological support during pregnancy and postpartum. Future research should investigate service gaps and points of intervention for improved cardiac maternity care, as well as explore the potential of peer support programmes to reduce the social isolation experienced by women with congenital heart disease. Patient or Public Contribution: The study followed a participatory design, whereby lived experience participants co‐produced the research with the study team. The lived experience participants took part in a series of four small‐group meetings, focused on sharing experiences and critically reviewing a draft research agenda and questionnaire, developed by the research team based on the groups' shared experiences. Following these meetings, the lived experience participants provided feedback on our analysis and contributed to this manuscript as co‐authors.

Context: Emergency care treatment planning is increasingly required in care homes for residents living with frailty and/or ill-health. ReSPECT (the Recommended Summary Plan for Emergency Care and Treatment) is a type of emergency care treatment plan used widely in UK care homes to guide treatment decisions in medical emergencies when residents are unable to speak for themselves. Objective: To understand care home staff experiences of implementing ReSPECT with residents in their care, and the implications for their role and practice. Methods: Semi-structured interviews were conducted with 31 care home staff from 12 care homes (seven residential, two nursing and three dual-registered) and one care provider group across three diverse areas of England between 2022 and 2023. Interview data were analysed thematically, drawing on Normalisation Process Theory (NPT) constructs. Findings: Care home staff facilitated and coordinated conversations with residents, their families, and health professionals to complete ReSPECT plans, and supported conversations to elicit resident wishes and reach a shared understanding of treatment scenarios. However, care home staff found interpreting ReSPECT recommendations in an emergency challenging and had mixed experiences of implementing recommendations with attending health professionals. Limitations: Self-selecting bias may have influenced findings. Implications: Current ReSPECT guidance for its use in care homes is limited to the role of care home staff in supporting conversations and does not reflect findings regarding their role in actively using plans in an emergency. There is a need for guidance for care home staff to support them in making informed decisions when interpreting ReSPECT plans in an emergency.

In the UK, the Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) is a widely used process, designed to facilitate shared decision-making between a clinician and a patient or, if the patient lacks capacity to participate in the conversation, a person close to the patient. A key outcome of the ReSPECT process is a set of recommendations, recorded on the patient-held ReSPECT form, that reflect the conversation. In an emergency, these recommendations are intended to inform clinical decision-making, and thereby enable the attending clinician—usually a general practitioner (GP) or paramedic—to act in the patient’s best interests. This study is the first to explore the extent to which ReSPECT recommendations realise their goal of informing best interests decision-making in community contexts. Using a modified framework analysis approach, we triangulate interviews with patients and their relatives, GPs and nurses and care home staff. Our findings show that inconsistent practices around recording patient wishes, diverging interpretations of the meaning and authority of recommendations and different situational contexts may affect the interpretation and enactment of ReSPECT recommendations. Enacting ReSPECT recommendations in an emergency can be fraught with complexity, particularly when attending clinicians need to interpret recommendations that did not anticipate the current emergency. This may lead to decision-making that compromises the patient’s best interests. We suggest that recording patients’ values and preferences in greater detail on ReSPECT forms may help overcome this challenge, in providing attending clinicians with richer contextual information through which to interpret treatment recommendations.

Background In out-of-hospital cardiac arrest (OHCA), decisions to terminate resuscitation or transport the patient to hospital are ethically fraught. However, little is known about paramedics’ ethical concerns in these decision-making processes. Objective To develop an understanding of how paramedics experience ethical concerns in OHCA decision-making processes, and how this relates to the ethical concerns of patients’ relatives. Design A qualitative study using semi-structured interviews with paramedics and relatives of OHCA non-survivors. Setting Two ambulance trusts in England. Participants Thirty-one paramedics, identified as decision-makers in adult OHCA events in which cardiopulmonary resuscitation (CPR) had been initiated, were interviewed. Fourteen interviews with relatives of OHCA non-survivors were also conducted. Analysis The interviews were analysed thematically, using a coding framework and following an empirical ethics approach. Results Four themes were developed: preventing harm to patients, best interests, caring for the patient’s family and moral distress. Paramedics conceptualised preventing harm both as saving lives and as preventing an undignified death or a life with severe brain damage. Paramedics’ and relatives’ views of best interests were influenced by values such as patient dignity and assumptions about age and quality of life. Paramedics expressed a duty of care towards the patient’s family. Relatives conveyed the importance of clear communication and acts of care performed by the ambulance crew, underscoring the ethical commitment that paramedics had towards patients’ families. Paramedics described decision-making processes that relied on clinical guidelines, rather than personal values and beliefs; this sometimes led to moral distress. Conclusion Non-protocolised ethical considerations are important in paramedic decision-making about terminating CPR in OHCA events. While paramedics use established guidelines and processes to reach decisions that prevent patient harm, they experience moral distress when personal convictions clash with guidelines. Training around ethical reasoning and decision making may help paramedics reduce their moral distress and provide consistent and transparent decisions for patients and their families.

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.