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BackgroundIn 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.ObjectiveTo 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.DesignA qualitative study using semi-structured interviews with paramedics and relatives of OHCA non-survivors.SettingTwo ambulance trusts in England.ParticipantsThirty-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.AnalysisThe interviews were analysed thematically, using a coding framework and following an empirical ethics approach.ResultsFour 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.ConclusionNon-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.

ObjectivesTo measure community attitudes to emergency care and treatment plans (ECTPs).DesignPopulation survey.SettingGreat Britain.ParticipantsAs part of the British Social Attitudes Survey, sent to randomly selected addresses in Great Britain, 1135 adults completed a module on ECTPs. The sample was nationally representative in terms of age and location, 619 (55%) were female and 1005 (89%) were of white origin.Outcome measuresPeople’s attitudes having an ECTP for themselves now, and in the future; how comfortable they might be having a discussion about an ECTP and how they thought such a plan might impact on their future care.ResultsPredominantly, respondents were in favour of people being able to have an ECTP, with 908/1135 (80%) being at least somewhat in favour. People in good health were less likely than those with activity-limiting chronic disease to want a plan at present (52% vs 64%, OR 1.78 (95% CI 1.30 to 2.45) p<0.001). Developing a long-term condition or becoming disabled would lead 42% (467/1112) and 43% (481/1112) of individuals, respectively, to want an ECTP. More, 634/1112 (57%) would want an ECTP if they developed a life-threatening condition. Predominantly, 938/1135 (83%) respondents agreed that an ECTP would help avoid their family needing to make difficult decisions on their behalf, and 939/1135 (83%) that it would ensure doctors and nurses knew their wishes. Nevertheless, a small majority—628/1135 (55%)—agreed that there was a serious risk of the plan being out of date when needed. A substantial minority—330/1135 (29%)—agreed that an ECTP might result in them not receiving life-saving treatment.ConclusionsThere is general support for the use of ECTPs by people of all ages. Nevertheless, many respondents felt these might be out of date when needed and prevent people receiving life-saving treatment.

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 Paramedics are responsible for critical resuscitation decisions when attending Out of Hospital Cardiac Arrests (OHCA). Existing research indicates that a range of clinical and non-clinical factors moderate their decision-making. Within the United Kingdom (UK), there is little evidence on how and why paramedics make their decisions at actual OHCA events. Methods We explored the experiences of UK paramedics using individually recalled OHCA events as catalysts for discussion. Pen portraits developed from semi-structured interviews with 31 paramedics across two UK ambulance services were thematically analysed, enabling cross-participant comparisons whilst retaining depth and context. Results We identified four themes: uncertainties encountered in resuscitation guidelines, influences on decision-making, holistic perspectives, and indirect moderators. We found that paramedics experienced uncertainty at all stages of the resuscitation process. Uncertainties arose from indeterminate, ambiguous or complex information and were described as having both clinical and ethical dimensions. Whilst guidelines drove paramedics’ decisions, non-clinical personal, practical and relational factors moderated their assessments of survivability and decision-making, with attitudes to interactions between patient age, frailty and quality of life playing a substantial role. Coping strategies such as uncertainty reduction, assumption-based reasoning and weighing pros and cons were evident from interviews. Conclusions The complexity of interactions between clinical and non-clinical factors points to an element of variability in paramedics’ responses to uncertainty. Exploring UK paramedics’ uncertainties and decision-making during specific OHCA events can help acknowledge and address uncertainties in resuscitation guidelines and paramedic training, providing paramedics with the tools to manage uncertainty in a consistent and transparent way.

Background The Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) was launched in the UK in 2016. ReSPECT is designed to facilitate meaningful discussions between healthcare professionals, patients, and their relatives about preferences for treatment in future emergencies; however, no study has investigated patients’ and relatives’ experiences of ReSPECT in the community. Objectives To explore how patients and relatives in community settings experience the ReSPECT process and engage with the completed form. Methods Patients who had a ReSPECT form were identified through general practice surgeries in three areas in England; either patients or their relatives (where patients lacked capacity) were recruited. Semi-structured interviews were conducted, focusing on the participants’ understandings and experiences of the ReSPECT process and form. Data were analysed using inductive thematic analysis. Results Thirteen interviews took place (six with patients, four with relatives, three with patient and relative pairs). Four themes were developed: (1) ReSPECT records a patient’s wishes, but is entangled in wider relationships; (2) healthcare professionals’ framings of ReSPECT influence patients’ and relatives’ experiences; (3) patients and relatives perceive ReSPECT as a do-not-resuscitate or end-of-life form; (4) patients’ and relatives’ relationships with the ReSPECT form as a material object vary widely. Patients valued the opportunity to express their wishes and conceptualised ReSPECT as a process of caring for themselves and for their family members’ emotional wellbeing. Participants who described their ReSPECT experiences positively said healthcare professionals clearly explained the ReSPECT process and form, allocated sufficient time for an open discussion of patients’ preferences, and provided empathetic explanations of treatment recommendations. In cases where participants said healthcare professionals did not provide clear explanations or did not engage them in a conversation, experiences ranged from confusion about the form and how it would be used to lingering feelings of worry, upset, or being burdened with responsibility. Conclusions When ReSPECT conversations involved an open discussion of patients’ preferences, clear information about the ReSPECT process, and empathetic explanations of treatment recommendations, working with a healthcare professional to co-develop a record of treatment preferences and recommendations could be an empowering experience, providing patients and relatives with peace of mind.

Aim Relatives of patients who have experienced an out of hospital cardiac arrest (OHCA) experience confusion and distress during resuscitation. Clear information from ambulance clinicians and the opportunity to witness the resuscitation helps them navigate the chaotic scene. However, UK-based evidence concerning relatives’ experiences of unsuccessful resuscitation attempts and interactions with ambulance clinicians is lacking. This qualitative study explores those experiences to inform ambulance clinician practice. Methods Two ambulance services in the UK identified OHCA events attended by their clinicians within the previous two weeks. After a minimum of three months relatives of non-survivors of these events were invited to participate in either a remote or face-to-face interview. Interviews focussed on their experiences of the resuscitation attempt and interactions with ambulance clinicians, their feelings at the time, and their reflections on the event afterwards. Data were analysed using reflexive thematic analysis. Results Semi-structured interviews were conducted with 14 relatives of OHCA non-survivors. Thematic analysis identified four themes. Cardiac arrest is a traumatic event for relatives, with chaotic noisy scenes increasing their distress. Many described feelings symptomatic of Post-Traumatic Stress Disorder since the event. During resuscitation, participants needed information from clinicians about what was happening, and provided information about their relatives’ wishes. Participants needed reassurance from clinicians that everything possible was done to save their relative and were reassured when they could witness some of the resuscitation. Participants were surprised how long resuscitation seemed to last; some were distressed that it lasted so long. Conclusion Relatives’ experiences highlight two key challenges for ambulance clinicians: (1) being aware of the tension relatives feel between needing reassurance that the crew is doing everything to save the patient and wanting to avoid prolonged and ultimately futile resuscitation attempts; and (2) having ongoing conversations with those present to inform clinical decision-making whilst managing the resuscitation attempt.

Background Digital communication between a patient and their clinician offers the potential for improved patient care, particularly for young people with long term conditions who are at risk of service disengagement. However, its use raises a number of ethical questions which have not been explored in empirical studies. The objective of this study was to examine, from the patient and clinician perspective, the ethical implications of the use of digital clinical communication in the context of young people living with long-term conditions. Methods A total of 129 semi-structured interviews, 59 with young people and 70 with healthcare professionals, from 20 United Kingdom (UK)-based specialist clinics were conducted as part of the LYNC study. Transcripts from five sites (cancer, liver, renal, cystic fibrosis and mental health) were read by a core team to identify explicit and implicit ethical issues and develop descriptive ethical codes. Our subsequent thematic analysis was developed iteratively with reference to professional and ethical norms. Results Clinician participants saw digital clinical communication as potentially increasing patient empowerment and autonomy; improving trust between patient and healthcare professional; and reducing harm because of rapid access to clinical advice. However, they also described ethical challenges, including: difficulty with defining and maintaining boundaries of confidentiality; uncertainty regarding the level of consent required; and blurring of the limits of a clinician’s duty of care when unlimited access is possible. Paradoxically, the use of digital clinical communication can create dependence rather than promote autonomy in some patients. Patient participants varied in their understanding of, and concern about, confidentiality in the context of digital communication. An overarching theme emerging from the data was a shifting of the boundaries of the patient-clinician relationship and the professional duty of care in the context of use of clinical digital communication. Conclusions The ethical implications of clinical digital communication are complex and go beyond concerns about confidentiality and consent. Any development of this form of communication should consider its impact on the patient-clinician-relationship, and include appropriate safeguards to ensure that professional ethical obligations are adhered to.

Objective The poorest populations of the world lack access to quality healthcare. We defined the key components of consulting via mobile technology (mConsulting), explored whether mConsulting can fill gaps in access to quality healthcare for poor and spatially marginalised populations (specifically rural and slum populations) of low- and middle-income countries, and considered the implications of its take-up. Methods We utilised realist methodology. First, we undertook a scoping review of mobile health literature and searched for examples of mConsulting. Second, we formed our programme theories and identified potential benefits and hazards for deployment of mConsulting for poor and spatially marginalised populations. Finally, we tested our programme theories against existing frameworks and identified published evidence on how and why these benefits/hazards are likely to accrue. Results We identified the components of mConsulting, including their characteristics and range. We discuss the implications of mConsulting for poor and spatially marginalised populations in terms of competent care, user experience, cost, workforce, technology, and the wider health system. Conclusions For the many dimensions of mConsulting, how it is structured and deployed will make a difference to the benefits and hazards of its use. There is a lack of evidence of the impact of mConsulting in populations that are poor and spatially marginalised, as most research on mConsulting has been undertaken where quality healthcare exists. We suggest that mConsulting could improve access to quality healthcare for these populations and, with attention to how it is deployed, potential hazards for the populations and wider health system could be mitigated.

Background While studies have examined the impact of digital communication technology on healthcare, there is little exploration of how new models of digital care change the roles and identities of the health professional and patient. The purpose of the current study is to generate multidisciplinary reflections and questions around the use of digital consulting and the way it changes the meaning of being a patient and/or a health professional. Method We used a large pre-existing qualitative dataset from the Long-term Conditions Young People Networked Communication (LYNC) study which involved interviews with healthcare professionals and a group of 16–24 years patients with long-term physical and mental health conditions. We conducted a three-stage mixed methods analysis. First, using a small sample of interview data from the LYNC study, we identified three key themes to explore in the data and relevant academic literature. Second, in small groups we conducted secondary analysis of samples of patient and health professional LYNC interview data. Third, we ran a series of rapid evidence reviews. Findings We identified three key themes: workload/flow, impact of increased access to healthcare and vulnerabilities. Both health professionals and patients were 'on duty' in their role more often. Increased access to healthcare introduced more responsibilities to both patients and health professionals. Traditional concepts in medical ethics, confidentiality, empathy, empowerment/power, efficiency and mutual responsibilities are reframed in the context of digital consulting. Conclusions Our collaboration identified conflicts and constraints in the construction of digital patients and digital clinicians. There is evidence that digital technologies change the nature of a medical consultation and with it the identities and the roles of clinicians and patients which, in turn, calls for a redefinition of traditional concepts of medical ethics. Overall, digital consulting has the potential to significantly reduce costs while maintaining or improving patient care and clinical outcomes. Timely study of digital engagement in the National Health Service is a matter of critical importance.

Background Emergency Care and Treatment Plans are recommended for all primary care patients in the United Kingdom who are expected to experience deterioration of their health. The Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) was developed to integrate resuscitation decisions with discussions about wider goals of care. It summarises treatment recommendations discussed and agreed between patients and their clinicians for a future emergency situation and was designed to meet the needs of different care settings. Our aim is to explore GPs’ experiences of using ReSPECT and how it transfers across the primary care and secondary care interface. Methods We conducted five focus groups with GPs in areas being served by hospitals in England that have implemented ReSPECT. Participants were asked about their experience of ReSPECT, how they initiate ReSPECT-type conversations, and their experiences of ReSPECT-type recommendations being communicated across primary and secondary care. Focus groups were transcribed and analysed using Thematic Analysis. Results GPs conceptualise ReSPECT as an end of life planning document, which is best completed in primary care. As an end of life care document, completing ReSPECT is an emotional process and conversations are shaped by what a ‘good death’ is thought to be. ReSPECT recommendations are not always communicated or transferable across care settings. A focus on the patient’s preferences around death, and GPs’ lack of specialist knowledge, could be a barrier to completion of ReSPECT that is transferable to acute settings. Conclusion Conceptualising ReSPECT as an end of life care document suggests a difference in how general practitioners understand ReSPECT from its designers. This impacts on the transferability of ReSPECT recommendations to the hospital setting.