Patient and relative experiences of the ReSPECT process in the community: an interview-based study.

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.

Why are some ReSPECT conversations left incomplete? A qualitative case study analysis.

Background: As an emergency care and treatment planning process (ECTP), a key feature of the Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) is the engagement of patients and/or their representatives in conversations about treatment options including, but not limited to, cardiopulmonary resuscitation (CPR). However, qualitative research suggests that some ReSPECT conversations lead to partial or no decision-making about treatment recommendations. This paper explores why some ReSPECT conversations are left incomplete. Methods: Drawing on observation and interview data collected in four National Health Service (NHS) hospital sites in England, this paper offers an in-depth exploration of six case studies in which ReSPECT conversations were incomplete. Using thematic analysis, we triangulate fieldnote data documenting these conversations with interview data in which the doctors who conducted these conversations shared their perceptions and reflected on their decision-making processes. Results: We identified two themes, both focused on 'mismatch': (1) Mismatch between the doctor's clinical priorities and the patient's/family's immediate needs; and (2) mismatch between the doctor's conversation scripts, which included patient autonomy, the feasibility of CPR, and what medicine can and should do to prolong a patient's life, and the patient's/family's understandings of these concepts. Conclusions: This case study analysis of six ReSPECT conversations found that mismatch between doctors' priorities and understandings and those of patients and/or their relatives led to incomplete ReSPECT conversations. Future research should explore methods to overcome these mismatches.

Assessing the quality of ReSPECT documentation using an accountability for reasonableness framework.

BACKGROUND: The Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) form, which supports the ReSPECT process, is designed to prompt clinicians to discuss wider emergency treatment options with patients and to structure the documentation of decision-making for greater transparency. METHODS: Following an accountability for reasonableness framework (AFR), we analysed 141 completed ReSPECT forms (versions 1.0 and 2.0), collected from six National Health Service (NHS) hospitals in England during the early adoption of ReSPECT. Structured through an evaluation tool developed for this study, the analysis assessed the extent to which the records reflected consistency, transparency, and ethical justification of decision-making. RESULTS: Recommendations relating to CPR were consistently recorded on all forms and were contextualised within other treatment recommendations in most forms. The level of detail provided about treatment recommendations varied widely and reasons for treatment recommendations were rarely documented. Patient capacity, patient priorities and preferences, and the involvement of patients/relatives in ReSPECT conversations were recorded in some, but not all, forms. Clinicians almost never documented their weighing of potential burdens and benefits of treatments on the ReSPECT forms. CONCLUSION: In most ReSPECT forms, CPR recommendations were captured alongside other treatment recommendations. However, ReSPECT form design and associated training should be modified to address inconsistencies in form completion. These modifications should emphasise the recording of patient values and preferences, assessment of patient capacity, and clinical reasoning processes, thereby putting patient/family involvement at the core of good clinical practice. Version 3.0 of ReSPECT responds to these issues.

General practitioners' experiences of emergency care and treatment planning in England: a focus group study.

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.

Why, when and how do secondary-care clinicians have emergency care and treatment planning conversations? Qualitative findings from the ReSPECT Evaluation study.

BACKGROUND: The Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) is an emergency care and treatment planning (ECTP) process, developed to offer a patient-centred approach to deciding about and recording treatment recommendations. Conversations between clinicians and patients or their representatives are central to the ReSPECT process. This study aims to understand why, when, and how ReSPECT conversations unfold in practice. METHODS: ReSPECT conversations were observed in hospitals within six acute National Health Service (NHS) trusts in England; the clinicians who conducted these conversations were interviewed. Following observation-based thematic analysis, five ReSPECT conversation types were identified: resuscitation and escalation; confirmation of decision; bad news; palliative care; and clinical decision. Interview-based thematic analysis examined the reasons and prompts for each conversation type, and the level of detail and patient engagement in these different conversations. RESULTS: Whereas resuscitation and escalation conversations concerned possible futures, palliative care and bad news conversations responded to present-tense changes. Conversations were timed to respond to organisational, clinical, and patient/relative prompts. While bad news and palliative care conversations included detailed discussions of treatment options beyond CPR, this varied in other conversation types. ReSPECT conversations varied in doctors' engagement with patient/relative preferences, with only palliative care conversations consistently including an open-ended approach. CONCLUSIONS: While ReSPECT supports holistic, person-centred, anticipatory decision-making in some situations, a gap remains between the ReSPECT's aims and their implementation in practice. Promoting an understanding and valuing of the aims of ReSPECT among clinicians, supported by appropriate training and structural support, will enhance ReSPECT conversations.

Digital communication between clinician and patient and the impact on marginalised groups: a realist review in general practice.

BACKGROUND: Increasingly, the NHS is embracing the use of digital communication technology for communication between clinicians and patients. Policymakers deem digital clinical communication as presenting a solution to the capacity issues currently faced by general practice. There is some concern that these technologies may exacerbate existing inequalities in accessing health care. It is not known what impact they may have on groups who are already marginalised in their ability to access general practice. AIM: To assess the potential impact of the availability of digital clinician-patient communication on marginalised groups' access to general practice in the UK. DESIGN AND SETTING: Realist review in general practice. METHOD: A four-step realist review process was used: to define the scope of the review; to search for and scrutinise evidence; to extract and synthesise evidence; and to develop a narrative, including hypotheses. RESULTS: Digital communication has the potential to overcome the following barriers for marginalised groups: practical access issues, previous negative experiences with healthcare service/staff, and stigmatising reactions from staff and other patients. It may reduce patient-related barriers by offering anonymity and offers advantages to patients who require an interpreter. It does not impact on inability to communicate with healthcare professionals or on a lack of candidacy. It is likely to work best in the context of a pre-existing clinician-patient relationship. CONCLUSION: Digital communication technology offers increased opportunities for marginalised groups to access health care. However, it cannot remove all barriers to care for these groups. It is likely that they will remain disadvantaged relative to other population groups after their introduction.

A qualitative exploration of whether lesbian and bisexual women are 'protected' from sociocultural pressure to be thin.

Heterosexual women in Western cultures are known to experience body image concerns, dieting and disordered eating as a result of intense social pressures to be thin. However, it is theorised that lesbian and bisexual women belong to a subculture that is 'protective' of such demands. Fifteen non-heterosexual women were interviewed about their experiences of social pressure. Thematic analysis of their accounts suggests that such theorising may be inaccurate, because these lesbian and bisexual women did not feel 'protected' from social pressures and experienced body dissatisfaction. While they might attempt to resist thin idealisation, resistance is not centred around their sexuality.