Emergency Care Plan Research Articles

19 How are paediatric tertiary care hospitals structured to respond to the needs of children with medical complexity during acute deteriorations? A landscape study in Canada

Abstract Background Children with medical complexity (CMC) are at risk of unplanned healthcare visits especially due to acute clinical deteriorations. Complex care (CC) programs help facilitate the needs of CMC. Objectives To identify the organizational and administrative resources available for the care of CMC in Canadian tertiary care paediatric hospitals and to assess how physicians believe these resources are adapted to the specific urgent needs of CMC. Design/Methods In this observational study, key informants representing complex care (CC) and paediatric emergency medicine (PEM) services from 15 paediatric tertiary care hospitals in Canada completed cross-sectional structured questionnaires. Participants were identified through national research networks (Pediatric Emergency Research Canada (PERC), Pediatric Inpatient Research Network (PIRN) and by snowball sampling. Utilizing the Lime Survey web application, two questionnaires (one for PEM, one for CC) were develop based on a literature review and following Burns methodology. Verbal questionnaires were administered via a secured teleconference application or completed digitally. Descriptive data were generated using Excel and SPSS v.29. Results From 09/2022 to 09/2023, 93% (28/30) key informants completed questionnaires (15 PEM, 13 CC, Table 1). Across the 15 sites, 12 had a CC program or clinic. Information about established CC programs was available for 10 sites (Table 2), from participating CC informants: 4/10 offered outpatient services; 6/10 offered inpatient and outpatient services; 8/10 offered last minute appointments for CMC. CC programs had variable staffing: mostly physicians (median 3 FTE, range: 0.2-6) and nurse practitioners (0.75 FTE, range: 0-9) or registered nurses (0.9 FTE, 0-8). CC informants reported offering an ED consultation service at 8/10 sites, while 6/12 PEM participants reported access to such a service. CC informants reported that their program rarely offered consultations during weekends (2/10) or nights (1/10). Across all sites, PEM informants reported good access to documents to help with continuity of care including emergency care plans (13/15), medical history (14/15), goals of care (13/15). Using an 11-point scale, CC informants rated their hospital’s median ability to meet the outpatient needs of CMC as 6.5 (range: 0-10), and their ED’s median ability to meet the needs of CMC as 7 (range 5-10). PEM informants reported their median ability to meet the needs of CMC as 8 (range 6-9). Informants made suggestions to improve the ED care of CMC (Table 3). Conclusion There exists wide variation in the structures caring for CMC and their availability in case of acute needs. National collaboration between CC and PEM teams may facilitate the design of programs to improve the acute outpatient care of CMC.

Autonomy & advocacy in planning for a medical emergency: Adults with a learning disability and family carers' experiences and perceptions of the Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) process.

The Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) is designed to facilitate meaningful discussions between healthcare professionals, patients, and their family about preferences for treatment in future medical emergencies. People with a learning disability may face particular barriers in completing health care plans and receiving emergency treatment, however little is known about their preferences towards emergency care treatment planning. This study explores the views of people with a learning disability, and family carers about ReSPECT. A reference group of 5 people with a learning disability contributed to the design of the workshops and evaluation of outputs. Online, arts-based interactive workshops were held with 2 groups of 6 people with a learning disability to explore how they felt about emergency care treatment planning, and to co-produce materials to support ReSPECT conversations. Carers of people with a learning disability participated in focus groups or interviews. Data from workshops, focus groups and interviews were analysed thematically. Themes were; Getting the Process Right, Lack of trust a barrier to ReSPECT planning, and Person-Centred Care. All groups supported the ReSPECT process feeling that ReSPECT plans could support person-centred care, enhancing the autonomy of a person with a learning disability and supporting the advocacy of carers. However, drawing on their previous experiences of the health care system some expressed doubt that their wishes would be carried out. Suggestions were made for improving the ReSPECT process and used to develop resources to support ReSPECT planning. Emergency care planning and ReSPECT are viewed positively by people with a learning disability and family carers. To ensure this works well for people with a learning disability attention should be given to reasonable, personalised adjustments to support their participation in planning conversations. There is a wider challenge of fostering trust in the health care system.

Proactive advance care planning conversations in general practice: a quality improvement project

Advance care planning (ACP) is a process of discussion, reflection and communication, enabling planning for future medical treatment. Despite evidence of benefits of ACP to patients, families and the healthcare...

Autonomy & advocacy in planning for a medical emergency: Adults with a learning disability and family carers’ experiences and perceptions of the Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) process

Background The Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) is designed to facilitate meaningful discussions between healthcare professionals, patients, and their family about preferences for treatment in future medical emergencies. People with a learning disability may face particular barriers in completing health care plans and receiving emergency treatment, however little is known about their preferences towards emergency care treatment planning. This study explores the views of people with a learning disability, and family carers about ReSPECT. Methods Online, arts-based interactive workshops were held with people with a learning disability to explore how they felt about emergency care treatment planning, and to co-produce materials to support ReSPECT conversations. Carers of people with a learning disability participated in focus groups or interviews. Data from workshops, focus groups and interviews were analysed thematically. Results Themes identified were: Getting the Process Right, Lack of trust as a barrier to ReSPECT planning, and Person-Centred Care. All groups supported the ReSPECT process. They felt that ReSPECT plans could support person-centred care, enhancing the autonomy of a person with a learning disability and supporting the advocacy of carers. However, drawing on their previous experiences of the health care system some expressed doubt that their wishes, as reflected in the recommendations, would be carried out. Suggestions were made for improving the ReSPECT process for people with a learning disability and used to develop resources to support ReSPECT planning. Conclusions Emergency care planning and ReSPECT are viewed positively by people with a learning disability and family carers. To ensure this works well for people with a learning disability attention should be given to reasonable, personalised adjustments to support their participation in planning conversations. There is a wider challenge of fostering trust in the health care system regarding treatment of people with a learning disability.

Characterising trends in the initiation, timing, and completion of recommended summary plan for emergency care and treatment (ReSPECT) plans: Retrospective analysis of routine data from a large UK hospital trust

AimTo assess patient socio-demographic and disease characteristics associated with the initiation, timing, and completion of emergency care and treatment planning in a large UK-based hospital trust. MethodsSecondary retrospective analysis of data across 32 months extracted from digitally stored Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) plans within the electronic health record system of an acute hospital trust in England, UK. ResultsData analysed from ReSPECT plans (n = 23,729), indicate an increase in the proportion of admissions having a plan created from 4.2% in January 2019 to 6.9% in August 2021 (mean = 8.1%). Forms were completed a median of 41 days before death (a median of 58 days for patients with capacity, and 21 days for patients without capacity). Do not attempt cardiopulmonary resuscitation was more likely to be recorded for patients lacking capacity, with increasing age (notably for patients aged over 74 years), being female and the presence of multiple disease groups. ‘Do not attempt cardiopulmonary resuscitation’ was less likely to be recorded for patients having ethnicity recorded as Asian or Asian British and Black or Black British compared to White. Having a preferred place of death recorded as ‘hospital’ led to a five-fold increase in the likelihood of dying in hospital. ConclusionVariation in the initiation, timing, and completion of ReSPECT plans was identified by applying an evaluation framework. Digital storage of ReSPECT plan data presents opportunities for assessing trends and completion of the ReSPECT planning process and benchmarking across sites. Further research is required to monitor and understand any inequity in the implementation of the ReSPECT process in routine care.

Emergency Care Plans for the Management of Emergencies in Children on Home Mechanical Ventilation

In pediatrics chronic respiratory insufficiency is increasingly treated on an outpatient basis with home mechanical ventilation. Nursing and medical teams with different structures take care of the often complex ill children in the outpatient setting. Structured treatment processes, especially emergency plans for the management of respiratory emergencies of home mechanical ventilated children are lacking. This article is a proposal for emergency management of respiratory infections, emergencies of non-invasively ventilated and invasively ventilated, tracheotomized children. In addition to resuscitation measures according to ERC/AHA, the focus is primarily on secretion management, as well as on the handling of ventilators and devices.

GPs' views on emergency care treatment plans: an online survey.

A holistic approach to emergency care treatment planning is needed to ensure that patients' preferences are considered should their clinical condition deteriorate. To address this, emergency care and treatment plans (ECTPs) have been introduced. Little is known about their use in general practice. To find out GPs' experiences of, and views on, using ECTPs. Online survey of GPs practising in England. A total of 841 GPs were surveyed using the monthly online survey provided by medeConnect, a market research company. Forty-one per cent of responders' practices used Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) plans for ECTP, 8% used other ECTPs, and 51% used Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) forms. GPs were the predominant professional group completing ECTPs in the community. There was broad support for a wider range of community-based health and social care professionals being able to complete ECTPs. There was no system for reviewing ECTPs in 20% of responders' practices. When compared with using a DNACPR form, GPs using a ReSPECT form for ECTP were more comfortable having conversations about emergency care treatment with patients (odds ratio [OR] = 1.72, 95% confidence interval [CI] = 1.1 to 2.69) and family members (OR =1.85, 95% CI = 1.19 to 2.87). The potential benefits and challenges of widening the pool of health and social care professionals initiating and/or completing the ECTP process needs consideration. ReSPECT plans appear to make GPs more comfortable with ECTP discussions, supporting their implementation. Practice-based systems for reviewing ECTP decisions should be strengthened.

Implementing a Structured Health Care Transition (HCT) Process for Sickle Cell Disease Using Quality Improvement: Results from the Sickle Cell Trevor Thompson Transition Project HCT Learning Collaborative

Ensuring consistent healthcare during transition is challenging for sickle cell disease (SCD). Emerging adults with SCD (EASCD) experience triple the mortality rates and double the acute care utilization rates compared to younger and older ages. The transition period is also plagued by reduced quality of life (QOL) with increased missed school days per year and worse standardized test scores. The Sickle Cell Trevor Thompson Transition (ST3P-UP) study aimed to improve acute care utilization and QOL for EASCD by standardizing the transition process while engaging the community as an equal partner. A prior regional stakeholder needs assessment identified care standardization, establishing individual emergency care plans (ECPs), and community engagement as critical success factors for improved access to and engagement in care during transition. The ST3P-UP SCD health hare transition (HCT) learning collaborative engaged 14 pediatric and adult paired sites that included a partner community-based organization (CBO) using the concept of a site “Triad” as the critical framework of each sites transition team. The collaborative aim statement established at a kickoff meeting was “ to improve the health of EASCD by implementing an education-based transition program in pediatric and adult SCD clinics to be accomplished by 24 months, using the Model for Improvement and the Got Transition Six Core Elements of Transition (6CE) model. ” Using the 6CE framework established by Got Transition® and the Model for Improvement QI methodology, we established a SCD HCT Process Measurement Tool (PMT) and 2 outcome measures for the transition learning collaborative namely: transition readiness assessment (RA), and an individualized emergency care plan (ECP). Monthly virtual meetings provided coaching on HCT recommendations, use of Plan-Do-Study-Act cycles, and practical guidance on implementing the 6CE. Sites were given a change package that included provider and patient education materials, resources to establish and strengthen a QI team, transition billing and coding resources etc.) to improve their transition processes. Implementation of 6CE was measured across 14 clinical sites, each comprised of both pediatric and adult clinics, who cared for 1625 EASCD aged 16-25. Clinical programs varied: 12 urban, 2 rural; 12 academic, 2 non-academic; 6 small, 8 large. The HCT-PMT assessed 6CE implementation adherence using iterative QI strategies at baseline (2018) and every six months thereafter for 54mo (2022). Pre-post results were compared for the overall group and by practice size. All 14 sites made substantial progress towards implementing a structured HCT process within 24 months. Overall HCT-PMT scores improved by 402% by the end of the 54mo collaborative (19.4 ± 14.1 to 97.4 ± 5.2). PMT scores improved significantly by 312% (24 to 99) for pediatrics and 539% (15 to 96 for adult sites. Pediatric PMT scores were higher at each assessment interval vs. adult scores, however adult sites achieved a higher degree of improvement. Smaller sites achieved a higher degree of improvement vs. large sites. Large site PMT scores improved 362% (21 to 97); small site PMT scores improved 444% (18 to 98). Additionally, sites demonstrated substantial improvements with having current ECPs for EASCD annually (completed and reviewed within the past year). At baseline, only 20% of pediatric and 3% of adult EASCD had a current ECP; only 38% of pediatric and 20% of adult EASCD had a current RA. Run charts demonstrated significant improvement with implementing the ECP measure. Pediatric sites had significant and sustained improvement in adherence to the ECP measure for >6mo. Adult sites started with a lower baseline score. Although they met their goal of showing process capability, they have not yet demonstrated sustained improvement. By Dec. 2022, site adherence with current ECP improved to 84% and 70% for pediatric and adult sites respectively. Adherence with current RA also improved to 76% and 70% for pediatric and adult sites respectively. All 14 sites showed significant improvement with implementing a structured HCT process aligned with the 6CE using QI confirming its feasibility in establishing a standardized and measurable transition process that can be applied to various chronic conditions.

Ultrasound Rounds: Anesthesiologist-Performed Intraoperative Point-of-Care Focused Assessment With Sonography in Trauma Examination Changes Surgical Management.

Focused Assessment with Sonography in Trauma (FAST) examinations have been performed for decades by surgeons during initial patient presentation for emergency care and surgical planning, as well as for guiding resuscitation. This case highlights how use of intraoperative FAST examinations performed by anesthesiologists can dramatically change patient management. Use by anesthesiologists perioperatively is an important skill, although it is not widely practiced.

Cardiopulmonary resuscitation and basic life support for people with atypical chest shapes and wheelchair users: Toward supplemented education and emergency management plans

This article explores current practice issues in basic life support (BLS) and cardiopulmonary resuscitation (CPR) delivery for people with disability and poses recommendations for development of education and training where specialist nurses and other health professionals can facilitate BLS and CPR techniques catering for people with atypical chest shapes wheelchair users and people at high risk of choking. People with a disability are at higher risk of premature and unexpected death. At present there is a significant gap in knowledge about how to deliver optimal BLS or CPR to people with atypical chest shapes wheelchair users and people at high risk of choking. This leave carers to augment guidelines during emergency situations. Introduction of supplemented BLS and CPR together with development of emergency care plans for people with disability could reduce the number of people with disability dying premature or preventable deaths.

Profile of people attending emergency departments with thoughts of self-harm and suicide: A descriptive study of a nurse-led programme in Ireland.

Increasing research has been conducted on individuals presenting with self-harm at emergency departments (EDs). However, less is known about individuals presenting to EDs with only self-harm ideation. We aimed to describe the characteristics of those attending Irish hospitals with self-harm ideation and investigate any differences in comparison to those presenting with suicide ideation. A prospective cohort study was conducted on Irish ED presentations due to suicidal and self-harm ideation. Data were obtained from the service improvement data set of a dedicated nurse-led National Clinical programme for the assessment of those presenting to Irish emergency departments due to Self-harm and Suicide-related Ideation (NCPSHI). A total of 10 602 anonymized presentation data were analysed from 1 January 2018 to 31 December 2019. Descriptive analysis was conducted to compare those with suicidal and self-harm ideation on sociodemographic and care interventions. Being female and aged <29 were more prevalent among the self-harm ideation presentations. Compared to the self-harm ideation group, a higher proportion of those with suicidal thoughts received an emergency care plan (63% vs 58%, p = 0.002) and General Practitioner letter sent within 24 h of presentation (75% vs 69%, p = 0.045). Little variation was found between hospitals for self-harm ideation in both years. Our study suggests that females and younger populations are more prevalent in hospital presentations due self-harm ideation, while presentations related to suicidal ideation are more often made by males and involving substance use. Attention should be given to the relationship between clinicians' attitudes towards care provision and the content of suicide-related ideation ED disclosure.

Recommended summary plan for emergency care and treatment: ReSPECT a mixed-methods study

Background Do not attempt cardiopulmonary resuscitation decisions have been widely criticised. The Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) process was developed to facilitate shared decisions between patients and clinicians in relation to emergency treatments, including cardiopulmonary resuscitation. Objective To explore how, when and why ReSPECT plans are made and what effects the plans have on patient outcomes. Design A mixed-methods evaluation, comprising (1) a qualitative study of ReSPECT decision-making processes, (2) an interrupted time series examining process and survival outcomes following in-hospital cardiac arrest and (3) a retrospective observational study examining factors associated with ReSPECT recommendations and patient outcomes. Setting NHS acute hospitals and primary care and community services in England (2017–2020). Participants Hospital doctors, general practitioners, nurses, patients and families. Data sources The following sources were used: (1) observations of ReSPECT conversations at six hospitals and conversations with clinicians, patient, families and general practitioners, (2) survey and freedom of information data from hospitals participating in the National Cardiac Arrest Audit and (3) a review of inpatient medical records, ReSPECT forms and NHS Safety Thermometer data. Results By December 2019, the ReSPECT process was being used in 40 of 186 (22%) acute hospitals. In total, 792 of 3439 (23%) inpatients, usually those identified at risk of deterioration, had a ReSPECT form. Involvement of the patient and/or family was recorded on 513 of 706 (73%) ReSPECT forms reviewed. Clinicians said that lack of time prevented more conversations. Observed conversations focused on resuscitation, but also included other treatments and the patient’s values and preferences. Conversation types included open-ended conversations, with clinicians actively eliciting the patients’ wishes and preferences, a persuasive approach, swaying the conversation towards a decision aligned with medical opinion, and simply informing the patient/relative about a medical decision that had already been made. The frequency of harms reported on the NHS Safety Thermometer was similar among patients with or without a ReSPECT form. Hospital doctors and general practitioners gave different views on the purpose of the ReSPECT process and the type of recommendations they would record. Limitations The research was undertaken within the first 2 years following the implementation of ReSPECT. Local policies meant that doctors led these conversations. Most patients were seriously ill, which limited opportunities for interviews. Incomplete adoption of the ReSPECT process and problems associated with the NHS Safety Thermometer tool affected the evaluation on clinical outcomes. Conclusions Patients and families were involved in most ReSPECT conversations. Conversations focused on resuscitation, but also included other emergency treatments. Respect for patient autonomy and duty to protect from harm informed clinicians’ approach to varying degrees, depending on the clinical situation and their views of ReSPECT as a shared decision-making process. The complexity of these conversations and the clinical, emotional and organisational barriers observed suggest that a nuanced and multifaceted approach will be necessary to support good ReSPECT processes. Future work Further research is needed to understand the advantages and disadvantages to the adoption of a national emergency care and treatment plan system, the most effective national and local implementation approaches, and whether or not shared decision-making approaches in the context of emergency care and treatment plans could further enhance patient and family engagement. Study registration This study is registered as ISRCTN11112933. Funding This project was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme and will be published in full in Health and Social Care Delivery Research; Vol. 10, No. 40. See the NIHR Journals Library website for further project information.

Provision of trauma care in asymmetric warfare: a conceptual framework to support the decision to implement frontline care services

IntroductionThe emerging trends of asymmetric and urban warfare call for a revision of the needs and the way in which frontline trauma care is provided to affected population. However, there is no consensus on the process to decide when and how to provide such lifesaving interventions in form of Trauma Stabilization Point (TSP).MethodsA three-step Delphi method was used to establish consensus. A focus group discussion was convened to propose a framework and develop the list of twenty-one (21) statements for validation of a group of experts.ResultsA panel of twenty-eight (28) experts reviewed the statements and participated to both first and second rounds. Comments and recommendations provided by the FGD and during round 1 were used to analyze the findings of the study. The proposed framework includes five main categories identified as interconnected components that facilitate the decision to implement or not the TSP. A total of sixteen (16) elements distributed across the five categories have been considered as being able to guide the decision to utilize such capability in high-risk security and resource constrained settings.ConclusionThe TSP has the potential to prevent death and disability. The proposed framework and categories add a structure to the decision-making process and represents an important step to support emergency and trauma care planning and implementation efforts.

Emergency medical care of patients with psychiatric disorders - challenges and opportunities: Results of a multicenter survey

BackgroundPre-clinical psychiatric emergencies are generally treated by emergency medical staff. The subsequent clinical treatment is often conditioned by interaction problems between emergency medical staff and psychiatric clinical staff.ObjectivesTo identify problems affecting interaction between emergency medical and psychiatric care of mentally ill patients and pinpoint aspects of optimized emergency care.MethodsTo shed light on the interaction problems an anonymous, questionnaire-based, nonrepresentative survey of 98 emergency physicians (EM) and 104 psychiatrists (PS) practicing in acute psychiatry was conducted between March 1, 2021 and October 1, 2021.ResultsThe chi-square test for multiple response sets revealed consistently significant differences (p < 0.001) between EM and PS with respect to the questions analyzed. Approximately 36% of EM reported not to be adequately qualified to handle psychiatric emergencies (p = 0.0001), while around 50% of respondents were neutral in their assessment in how to deal with psychiatric emergencies. 80% of EM reported a negative interaction (rejection of patients) with PS when referring a psychiatric emergency patient to the acute psychiatric unit. The most common reasons for refusal were intoxication (EM: 78.8%, PS: 88.2%), emergency physician therapy (EM: 53.8%, PS: 63.5%), and not resident in the catchment area of the hospital (EM 68.8%, PS: 48.2%). In the casuistry presented, most respondents would choose “talk down” for de-escalation (EM: 92.1%, PS: 91.3%). With respect to drug therapy, benzodiazepine is the drug of choice (EM: 70.4%, PS: 78.8%). More EM would choose an intravenously (i.v.) or a Mucosal Atomization Device (MAD) administration as an alternative to oral medication (i.v.: EM: 38.8%, PS: 3.8%, p = 0.001, MAD: EM: 36.7%, PS: 10.6%, p = 0.006). Significantly more EM would seek phone contact with the acute psychiatric hospital (EM: 84.7%, PS: 52.9%, p = 0.0107). A psychiatric emergency plan was considered useful in this context by more than 90% of respondents. The need for further training for EM with regard to treating psychiatric clinical syndromes was considered important by all respondents. In particular, the topics of “psychogenic seizure,“ “intoxication,“ and “legal aspects of psychiatric emergencies” were considered important (Mann-Whitney U test, p < 0.001).ConclusionThe interaction-related problems identified in the emergency medical care of pre-clinical psychiatric patients relate to non-modifiable, structural problems, such as insufficient admission capacity and non-existent or inadequate monitoring capabilities in acute psychiatric hospitals. However, factors such as the education and training of EM and communication between EM and PS can be improved. Developing personalized emergency care plans for psychiatric patients could help to optimize their care.

Implementation of ReSPECT in acute hospitals: A retrospective observational study

AimsTo evaluate, in UK acute hospitals, the early implementation of the Recommended Summary Plan for Emergency Care and Treatment (ReSPECT), which embeds cardiopulmonary resuscitation (CPR) recommendations within wider emergency treatment plans. To understand for whom and how the process was being used and the quality of form completion. MethodsA retrospective observational study evaluating emergency care and treatment planning approaches used in acute UK hospitals (2015–2019), and in six English hospital trusts the extent of ReSPECT use, patient characteristics and completion quality in a sample 3000 patient case notes. ResultsThe use of stand-alone Do Not Attempt Cardiopulmonary Resuscitation forms fell from 133/186 hospitals in 2015 to 64/186 in 2019 (a 38% absolute reduction). ReSPECT accounted for 52% (36/69) of changes.In the six sites, ReSPECT was used for approximately 20% of patients (range 6%-41%). They tended to be older, to have had an emergency medical admission, to have cognitive impairment and a lower predicted 10 year survival. Most (653/706 (92%)) included a ‘not for attempted resuscitation’ recommendation 551/706 (78%) had at least one other treatment recommendation. Capacity was not recorded on 13% (95/706) of forms; 11% (79/706) did not record patient/family involvement. ConclusionsReSPECT use accounts for 52% of the change, observed between 2015 and 2019, from using standalone DNACPR forms to approaches embedding DNACPR decisions within in wider emergency care plans in NHS hospitals in the UK. Whilst recommendations include other emergencies most still tend to focus on recommendations relating to CPR. Completion of ReSPECT forms requires improvement.Study registration:https://www.isrctn.com/ISRCTN11112933

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

BackgroundAs 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. MethodsDrawing 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. ResultsWe 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. ConclusionsThis 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.

Caring in the silences: why physicians and surgeons do not discuss emergency care and treatment planning with their patients — an analysis of hospital-based ethnographic case studies in England

BackgroundDespite increasing emphasis on integrating emergency care and treatment planning (ECTP) into routine medical practice, clinicians continue to delay or avoid ECTP conversations with patients. However, little is known about...

Using advance and emergency care plans during transfer decisions: A grounded theory interview study with care home staff

Background: Advance care planning has been identified as one of few modifiable factors that could reduce hospital transfers from care homes. Several types of documents may be used by patients and clinicians to record these plans. However, little is known about how plans are perceived and used by care home staff at the time of deterioration. Aim: To describe care home staff experiences and perceptions of using written plans during in-the-moment decision-making about potential resident hospital transfers. Design: Qualitative semi-structured interviews analysed using the Straussian approach to grounded theory. Setting/participants: Thirty staff across six care homes (with and without nursing) in the East and West Midlands of England. Results: Staff preferred (in principle) to keep deteriorating residents in the care home but feared that doing so could lead to negative repercussions for them as individuals, especially when there was perceived discordance with family carers’ wishes. They felt that clinicians should be responsible for these plans but were happy to take a supporting role. At the time of deterioration, written plans legitimised the decision to care for the resident within the home; however, staff were wary of interpreting broad statements and wanted plans to be detailed, specific, unambiguous, technically ‘correct’, understood by families and regularly updated. Conclusions: Written plans provide reassurance for care home staff, reducing concerns about personal and professional risk. However, care home staff have limited discretion to interpret plans and transfers may occur if plans are not specific enough for care home staff to use confidently.

SMA – OUTCOME MEASURES AND REGISTRIES: EP.261 Improving the implementation of spinal muscular atrophy (SMA) standards of care (SoC) internationally – the SMA SoC for all platform

The standards of care (SoC) for patients with rare diseases have improved with the development of international guidelines. However, the implementation of SoC practices differs worldwide. A training program was developed to increase awareness and knowledge of SMA, implement SoC for patients with SMA and improve access to standardized multidisciplinary care provided by local specialized and trained centers. A network of international multidisciplinary members developed training modules and provided preceptorship and support (inter-healthcare professional mentorship). This led to the development of the SMA SoC For All Platform, a telematics solution, which consists of a telehealth section for healthcare professionals (https://smasoc.global) and a telecare section for patients. The telehealth section contains seven modules. These modules were developed by 19 authors who contributed a broad range of knowledge and expertise on SMA SoC and on the practical management of patients with SMA. The modules include topics on: 1) SMA disease and landscape, 2) acute care and emergency services, 3) orthopedic care and positioning, 4) respiratory care, 5) nutrition and swallowing, 6) physical rehabilitation and 7) primary care physician and patient/caregivers. The telecare section consists of a patient resource section (care booklet, emergency care plan and patient card) developed in collaboration with patient associations representatives. In addition, a soon-to-be-launched physiotherapy section will host videos on respiratory care and mobility exercises that physiotherapists and rehabilitation physicians can recommend to patients and their caregivers. Successful implementation of the SMA SoC For All Platform could serve as a blueprint for SoC in several countries and potentially for other rare diseases.

Emergency Planning as Part of Healthcare Transition Preparation for Patients with Duchenne Muscular Dystrophy

BackgroundEmergency care planning is an important component of healthcare transition, particularly for patients with medical complexity. Duchenne muscular dystrophy (DMD) is a complex, progressive pediatric-onset disease affecting multiple organ systems including impairment of cardiac and pulmonary function, high risk for fractures, fat embolism, adrenal crisis and malignant hyperthermia. Appropriate interdisciplinary emergency management is critical for survival for these patients. The purpose of this quality improvement project was to develop a process to reliably share an individualized emergency care plan (ECP) with patients and their families as part of a larger plan to develop an integrated transition program. MethodsAn interdisciplinary team of nurses and clinicians used the principles of quality improvement to develop a reliable process to assure patients with DMD received an individualized, multidisciplinary ECP at routine interdisciplinary clinic visits. Additionally, the project used surveys to assess patient and family satisfaction with the letter and whether it improved their knowledge of emergency care. ResultsSixty-two patients were seen during the study timeframe. All received an ECP. Sixty-two surveys were sent and twenty-three surveys were returned. Of those that responded, the majority stated the ECP increased their knowledge of emergency care. ConclusionECPs can be developed and disseminated to patients with DMD and their caregivers. This tool can potentially promote timely and appropriate emergency care for these patients with unique and complex medical needs.