Progress update: October 2016
The ReSPECT form and documents have been discussed with patient focus groups and have undergone initial usability testing in four pilot sites:
- an acute hospital
- a hospice (inpatient and community services)
- a nursing home
- a paediatric ICU and palliative care service (involving in-patients and community)
Efforts are being made to achieve usability testing also in general practice.
These processes have provided useful feedback that will inform further, relatively minor, changes to the form and its supporting documents, and have emphasised the importance of having adequate training in place (supported by adequate educational materials) before the ReSPECT process and form are used in clinical practice. However, they have not identified any major obstacles to introduction of the ReSPECT process in the relatively near future. The form was found to be useable with patients and all the sites would be willing to implement it in their organisations.
The national Working Group met in late September to discuss the findings and, together with the HELIX Centre, will make minor refinements to the form and its supporting materials, and develop additional educational materials and an implementation guide to support all health and care professionals in the adoption and implementation of the ReSPECT process.
The working group recognises the importance of robust evaluation to underpin the widespread clinical use of this process and a large NIHR funded evaluation study is underway in a number of acute settings. Options are being explored for wider integrated community evaluation and to identify how local areas and healthcare communities could be encouraged and supported to adopt a Quality Improvement approach to implementation meantime.
The Working Group will meet again in early January 2017 and aims to make the form and supporting materials available for adoption by local health communities from February 2017.
Progress update: June 2016
Following the public consultation and interviews to assess how the potential use of the Emergency Care and Treatment Plan (ECTP) in a variety of settings the Working Group has made a number of changes to the layout and wording of the document to address the issues highlighted.
The title of the document has been changed from ECTP to ReSPECT (Recommended Summary Plan for Emergency Care and Treatment). The main reasons for this are (1) to make it clear to all that this is recording recommended care and treatment for a future emergency (the final clinical decisions rest with the professionals dealing with any emergency) and that (2) it is a summary and not a substitute for more detailed plans.
The ReSPECT process 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.
The latest version of the ReSPECT form, designed in collaboration with the Helix Centre, will be reviewed by focus groups and used in a pilot study to be carried out in four UK sites for one month. The Working Group will meet next in late September to review feedback from these evaluations and to decide on any further changes that may be needed. An important aim of the project is to remain responsive to ongoing feedback as it continues to develop.
Progress update: April 2016
The public consultation inviting feedback on the Emergency Care and Treatment Plan (ECTP) prototype and supporting information documents closed on 29 February 2016. The purpose of this was to gain feedback from the public and healthcare professionals. Over 1000 responses were received of which 10% were from lay people, 80% from healthcare professionals and the remaining 10% from patient and social care organisations and professional organisations.
Over 91% of respondents agreed that the ECTP is a good idea. A total of fourteen interviews with members of the public, paramedics, senior nurses (nursing home, community matron and palliative care), paediatricians, physicians (acute and palliative care), general practitioners and surgeons were also conducted. The aim of the interviews was to assess how well the ECTP document could be used in a variety of settings to record patients' preferences and clinical decisions following discussion or, in the case of paramedics, guide their practice in an emergency situation. A range of, and in some instances, very differing views were expressed in response to the survey questions. This feedback, on the ECTP and supporting information documents has been reviewed and collated into the main themes listed below and these are being considered by the Working Group:
- A wish for clearer messaging and communication on the ECTP itself and in the supporting documents (e.g. the purpose of the ECTP, clarity for sections recording patients’ preferences and those recording clinical decisions, how it interfaces with other systems, use for children)
- The legal status of the ECTP and the decisions recorded on it, and other legal aspects such as compliance with mental capacity legislation
- Design of the plan (e.g. colour, layout, style)
- Education materials and resources for healthcare professionals.
The Helix Centre (a joint initiative between the Royal College of Art and Imperial College London) specialises in the design of documents to maximise their effectiveness when used to address complex healthcare issues and has volunteered its expertise, time and resources to refine and develop the ECTP to try to ensure that it meets the needs of both patients and healthcare professionals. Work is already underway on this and the amended material will be presented to the Working Group when it meets again at the end of May. Two patient focus groups have been arranged to review the revised material and to provide feedback and advice to the Working Group.
Progress update: February 2016
The ECTP and decision-making process must meet the needs of all age groups, all patients, all healthcare professionals and all clinical settings, ranging from people’s own homes to an intensive care unit.
Six documents were available for comment via Pubic Consultation which closed on Monday 29 February 2016. Feedback will be grouped according to the section of documents they refer to and themes will be identified. This information will be presented to the Working Group at their next meeting towards the end of March and the documents will be revised accordingly. Pilot sites and educational resources will be then be identified.