Title: Evaluation of the Recommended Summary Plan for Emergency Care and Treatment
Funder: Department of Health and Social Care

Abstract: National reviews have raised concerns about do not attempt cardiopulmonary resuscitation (DNACPR) decisions. They found that cardiopulmonary resuscitation (CPR) is still performed on occasions when it has little or no chance of success. Patient and family involvement in decision-making is sub-optimal. The decision to withhold resuscitation is commonly conflated with ‘not for active treatment’ and these decisions create ethical difficulties for clinicians. There is evidence that this reduces overall quantity and quality of care. Emergency care and treatment plans integrate DNACPR decisions into overall treatment plans. A national working group was formed in February 2015 and started working on a national form to record anticipatory decisions about CPR and other life-sustaining treatment, and to guide decision-making in an emergency situation in which the person lacks capacity. The Recommended Summary for Emergency Care and Treatment (ReSPECT) form and supporting training package will be made available to the NHS in early 2017. Further information about ReSPECT is available at https://www.resus.org.uk/consultations/respect/ We propose a mixed-methods evaluation of the use of new national Recommended Summary for Emergency Care and Treatment (ReSPECT) for adults being admitted to acute hospitals to determine how, when and why they are used and what effects they have on patient care. We will use data from a purposeful sample of six NHS Acute Trusts that are broadly representative of the NHS overall, along with national data from the National Cardiac Arrest Audit the project to: (1) Describe (a) the clinician decision-making processes and patient / family involvement and (b) assess timing, consistency and ethical basis of decisions recorded in clinical notes. (2) Quantify the effect of ReSPECT on the frequency of and outcomes from in-hospital resuscitation attempts. (3) Present a descriptive summary of patient characteristics according to ReSEPCT choices and evaluate whether a DNACPR decision, made in the context of an overall treatment plan it influences patient outcome and their experience. (4) Synthesise the key findings from the study and identify future research priorities from the patient, clinician and policy maker perspective and effectively disseminate findings, ensuring that key messages are integrated into future development work of ReSPECT. The evaluation will comprise of 4 work packages (WP): WP 1: A qualitative study of the decision making process using observation, mini-interviews with decision making clinicians and patients/family members to explore how and why judgments are made, their ethical basis and the experience of patient / family of the decision making process. WP 2: An interrupted time series analysis using repeated measures of process and survival outcomes for in-hospital cardiac arrests covering two years before and after two years after ReSPECT implementation WP 3: A descriptive summary of patient characteristics according to ReSPECT treatment choice and evaluate whether a DNACPR decision, made in the context of an overall treatment plan influences patient outcome and patient experience. WP 4: A narrative synthesis of the key findings of the study and future research priorities from the patient, clinician and policy maker perspective, effectively disseminated to ensure that key messages are integrated into future development work of ReSPECT. The project will provide an opportunity to conduct a robust prospective evaluation of a large scale change in NHS policy and practice. It is focussed on resuscitation decisions and advance care planning; providing information about the consequences of this policy change on the three main areas identified as most important by patients and clinicians and highlighted by independent enquires.

Lay abstract: If someone is fit and healthy and their heart stops resuscitation can save their life. Resuscitation cannot help someone who is dying from a serious illness and not all patients want resuscitation. Do not attempt resuscitation (DNAR) orders allow patients and doctors to decide whether or not to attempt resuscitation when the heart stops. Whilst the idea of DNAR seems relatively simple, research has found that some doctors and nurses don't like talking about DNAR or don't do it very well. This means some patients aren't given the chance to think about whether they would like resuscitation or not. A do not attempt resuscitation order does not mean that someone is going to die - just that they do not want resuscitation. In fact half of the people who have a DNAR in a hospital live and go home. It is a concern therefore that doctors and nurses sometimes misunderstand what a DNAR means and stop other treatments and basic nursing care. Many hospitals also have their own way of doing things. This means that if a patient decides they don't want resuscitation and agree a DNAR with their GP, the hospital or ambulance may ignore it. Patients often like to know about treatments they will get and doctors and nurses like to make people better. This makes it easier to talk about treatments that will be given rather than those that won't be given. Research has shown that it works better if an overall plan is made about what to do if an emergency develops rather than just a plan about resuscitation. A national meeting of patients, charities, doctors, nurses and those that run the NHS met and agreed there was a need for a new national system that allows emergency care treatment plans to be made and recorded. From this a new Recommended Summary Plan for Emergency Care and Treatment was developed and pilot tested (for more information see https://www.resus.org.uk/consultations/respect/). ReSPECT aims to respect patient preferences and respect clinical judgment through shared conversations between a person and their healthcare professionals. One of its principal aims is to make sure people understand the care and treatment options that may be available to them and that may work in a medical emergency, and to allow them to make healthcare professionals aware of their preferences Although the idea of emergency plans sounds good, experience (e.g. the Liverpool Care Pathway) has taught us that is is important to test any changes to the way we do things. This project therefore plans to study how, when and why these emergency treatment plans are made and the effects they have on patient care. The project will look at people coming into hospital as this is where most decisions will be made initially. Because many people come to hospital from home we will also be able to see if plans are being made whilst people are at home. The study will involve researchers watching emergency treatment decisions being made in hospital. We will also interview doctors, nurses, patients and family members to ask them about their experience. This will allow us to find out when decisions are made and check they are being made consistently and are ethical. We will use a national resuscitation audit to see what effect emergency treatment plans have on the number of people having resuscitation and what happens to them afterwards. The study will also look at how emergency treatment plans affect overall patient care and experience. We will work closely with our patient and public partners to ensure the research is conducted sensitively. This will ensure the patient remains central to the research and how we interpret the study findings. Patients and members of the public will participate in the research as members of the research team and through membership of study committees. Through our partnership with key national organisations the essential information this study will produce will inform the future use of emergency plans throughout the NHS.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS;7.3 MANAGEMENT AND DECISION MAKING
Health categories: GENERIC HEALTH RELEVANCE