Background and study rationale
Anticipatory treatment plans
When a person develops a life-threatening condition or has a sudden deterioration in an existing illness, rapid treatment decisions may be needed. Often, the person is unable to be involved in the decision at the time, and there is limited clinical information or information about what their treatment preferences might be in this situation. Anticipatory treatment decisions and recommendations can improve this decision-making process and help to guide healthcare professionals while ensuring the person’s values and preferences are respected in the future. Anticipatory treatment plans can take several forms. A person may decide to make an advance decision to refuse treatment and specify particular treatments that should not be given to them should they be unable to speak for themselves.1 More commonly an advance care plan (ACP) may be made between a person, their family and those caring them to document their future priorities of care more broadly, including preference for place of death.2–4 ACP is mainly advocated in the context of end-of-life care, although an international consensus definition of ACP states that: ‘Advance care planning is a process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals and preferences regarding future medical care’.5
Emergency care treatment plans (ECTPs), sometimes called treatment escalation plans, focus specifically on treatment decisions in emergency or acute illness situations. Their aim is to make treatment recommendations that reflect the person’s preferences and values, and they are reached in discussion with the person or their family. However, the specific recommendations are made by the healthcare professional and are intended to guide future treating clinicians.6 An important distinction between ACPs and ECTPs is that, whereas the ultimate focus of ACPs is on end-of-life care preferences, ECTPs focus on steps to be taken in the event of an acute pathophysiological deterioration in which recovery is possible, although it may be unlikely.7 Prior to 2016, stand-alone do not attempt cardiopulmonary resuscitation (DNACPR) recommendations were the most commonly used form of emergency care treatment planning document in acute NHS hospitals (72% of hospitals).8 However, concerns existed about their use, including lack of discussion with patients and/or their family, failure to consider cardiopulmonary resuscitation (CPR) recommendations before a patient deteriorates, and lack of transferability of forms between primary and secondary care and ambulance services.9,10 A particular concern was that a focus on CPR leads to lack of consideration of other treatments that may or may not be appropriate.11–13 Responding to these concerns, some hospitals and health networks developed ECTPs to provide a more holistic approach to anticipatory medical decision-making.14–16 In 2016, the Resuscitation Council United Kingdom (RCUK) led development of a national standardised approach to support conversations about goals of care and to provide guidance to clinicians about treatments to be recommended in an urgent situation when the patient lacks capacity to decide for themselves: Recommended Summary Plan for Emergency Care and Treatment (ReSPECT).6
The ReSPECT process
ReSPECT is both a process and a form documenting the process (see Report Supplementary Material 1 for copy of ReSPECT form, versions 2 and 3). As described on the RCUK website, the ReSPECT process creates a summary of personalised recommendations for a person’s clinical care in a future emergency in which they do not have capacity to make or express choices. The process takes into account both patient preferences and clinical judgement and records ‘agreed realistic clinical recommendations’ including a recommendation whether or not CPR should be attempted if the person’s heart or breathing stop. Implementation of ReSPECT in NHS acute trusts began in December 2016 and within 3 years it was used in 22% of trusts. While other forms of ECTPs were used in some trusts, ReSPECT accounted for 60% of the observed move away from stand-alone DNACPR forms to ECTPs during this time.17 Since its initiation the ReSPECT form has been modified in response to feedback from clinicians and patients (in 2023 both versions 2 and 3 were in use).
Although ReSPECT implementation occurred first in acute trusts, it was always envisaged that this process would cross the primary and secondary care interface. Indeed, it was developed as a patient held form rather than a clinical record. An evaluation of ReSPECT in early-adopter trusts found that many clinicians thought that the ReSPECT conversation and documentation of recommendations fitted better into a primary-care setting.18 Patients may have an established relationship with their general practitioner (GP), conversations can occur over an extended period, patients are often less sick and more able to engage in discussion, and conversations can be placed in a wider context of ACP. However, there are also potential difficulties in moving ReSPECT conversations to primary care; patients and families may be less ready to think about these things until a crisis emerges, GPs may be uncertain about hospital-based interventions, and both may have concerns about the effect of a conversation on the patient–doctor relationship. Another challenge to the use of ReSPECT across the primary and secondary care interface is that hospital doctors and GPs use the process in different ways and recommendations do not always translate to different settings.19
Emergency care treatment plans and person-centred care
There is an ethical and professional obligation to balance benefits and burdens of treatment from the patient’s perspective.20 Current NHS policy and professional guidance emphasises a model of personalised care and shared decision-making.21 ECTPs can facilitate person-centred shared decision-making in the acute situation by summarising earlier considered assessments of the potential benefits and burdens of a range of future treatments, taking into account what is important to the patient.
People with a learning disability might particularly benefit from emergency care treatment planning as their needs and wishes are often not met in acute situations.22 Health outcomes are often poor for people with a learning disability because health professionals do not understand their needs.22–24 Obstacles include lack of education and training among health professionals, communication challenges and/or a perception that individuals lack capacity because of their disability.25,26 Anticipatory care planning with people with a learning disability is minimal due to a lack of confidence and awareness among medical staff.27–29 This further disadvantages people with a learning disability by denying them input into decisions about future treatment.
The impact of COVID-19 on emergency care treatment planning
The COVID-19 pandemic generated increased interest in the use of ECTPs in general and ReSPECT in particular. High mortality, particularly among older frail people and those with specific medical conditions, few effective treatments and restrictions on hospital visiting, all had a potential impact on decisions about whether a person would benefit from or would want hospital admission or treatment if they developed COVID-19. GPs and hospital doctors admitting acutely ill patients were encouraged to have these conversations with patients early and to document the resulting treatment recommendations. In a UK teaching hospital, completion of treatment escalation plans more than doubled during COVID-19 from 20% of inpatients to 50%, and the scope of the recommendations was broader than before COVID-19.30 This renewed emphasis on anticipatory decision-making during COVID-19 was seen as supporting best practice in person-centred care. A paper reporting a retrospective analysis of a multicentre cohort study of patients admitted to hospital with COVID-19 also found more nuanced decision-making around life-sustaining treatments, such as CPR. Participating clinicians explained that the use of the ReSPECT process allowed more nuanced treatment recommendations to be made compared with using DNACPR forms.31 It was also an opportunity to embed the principles and practice of ACP and emergency care treatment planning into clinical practice more generally.32 However, there were concerns that the impetus to complete ECTPs early, and the restrictions on communicating with patients and their families in person, might lead to inappropriate use of ECTPs and result in poor patient care, leading to guidance being issued by professional and regulatory organisations.33,34 The Care Quality Commission’s report into its review of DNACPR recommendations during the COVID-19 pandemic recommended that decisions about DNACPR should be made as part of a wider conversation about ACP, and that people and their representatives should be supported in having these conversations. The report suggested that ReSPECT was a good example of an ACP process that enabled these conversations to occur.35 The Royal College of General Practitioners and British Medical Association recognised the specific challenges for GPs in having these conversations during a pandemic and provided guidance to its members reiterating the requirement for individualised conversations about future treatment decisions.36,37 It is not clear to what extent practice around emergency care treatment planning has changed since the pandemic.
Evaluating the use of emergency care treatment plans in the United Kingdom
We identified six UK evaluation studies of locally developed ECTPs published between 2010 and 2017.14,15,38–41 All reported that the ECTP improved communication and documentation of treatment escalation decisions. Three studies reported perceived improvement in appropriate decision-making around treatment escalation and resuscitation, although appropriate was not defined. ECTPs were positively evaluated by staff. Two studies demonstrated a significant reduction in patient harms associated with the use of the ECTP compared with patients who had a standalone DNACPR form documented in their notes.40,41 Since the introduction of ReSPECT, the focus of published evaluation studies has been on this model of ECTP. An evaluation of the first ReSPECT pilot in Scotland, which included 200 ReSPECT forms completed in a range of settings (hospital, hospice and community), found that patients with a ReSPECT form were more likely to die in their preferred place of care and had a reduced chance of readmission within 3 months of hospital discharge. Patients and staff were generally positive about the process. Challenges included time pressures, staff reluctance to initiate a conversation or lack of confidence to do so.42 A multicentre evaluation of the use of ReSPECT in early adopter sites involving six acute NHS trusts in England took place between 2017 and 2019. It found that ReSPECT conversations were mainly initiated with patients nearing the end of their life or at imminent risk of deterioration and focused on CPR decisions. However, a move towards a more holistic approach in terms of treatment recommendations and conversations with patients and their families was observed.8 Doctors’ uncertainty about a patient’s prognosis, constraints of time and external environment, and the need to minimise patient distress, influenced both the prioritisation and content of conversations.18 An interview study with GPs and care home staff in the West of England found a generally positive attitude to the use of ReSPECT but noted that its use was complex and there were challenges in incorporating patients’ preferences into decision-making. The authors recommended a multidisciplinary approach that engaged care staff more in the process.43 There has been no large study of the use of ReSPECT or other ECTP in the community setting.