ReSPECT is a process that creates personalised recommendations for a person’s clinical care in a future emergency in which they are unable to make or express choices. It provides health and care professionals responding to that emergency with a summary of recommendations to help them to make immediate decisions about that person’s care and treatment. ReSPECT can be complementary to a wider process of advance/anticipatory care planning.
The plan is created through conversations between a person and their health professionals. The plan is recorded on a form and includes their personal priorities for care and agreed clinical recommendations about care and treatment that could help to achieve the outcome that they would want, that would not help, or that they would not want.
ReSPECT can be for anyone, but will have increasing relevance for people who have complex health needs, people who are likely to be nearing the end of their lives, and people who are at risk of sudden deterioration or cardiac arrest. Some people will want to record their care and treatment preferences for other reasons.
People should not expect to use the ReSPECT process until it has been established in their locality.
“Empowering people to make informed decisions about their care is an essential part of a person-centred approach to healthcare, and nowhere is this more important than in decisions about life and death. The ReSPECT process was developed to help ensure that these decisions are made correctly, and as far as possible in accordance with a person’s own wishes. We believe this will improve the quality of care, and lead to a culture shift within emergency and end-of-life care.”
Federico Moscogiuri, Chief Executive, Resuscitation Council (UK)
“Let's face it - no-one really wants to think about what might happen if they were to become critically ill! But of course the best way to do that is by planning ahead and doing the thinking while there's no crisis to deal with. That way you have time to think clearly, take advice, and share your thoughts and wishes with the people who might have to care for you. The ReSPECT process provides this opportunity in a clear, straightforward way. It will hopefully make it much easier for everyone, both inside and outside the healthcare professions, to make these challenging decisions together.”
Viv Cummin, Patient Representative, ReSPECT Working Group
ReSPECT has been introduced in some localities as part of a formal research evaluation taking place over 3 years. Alongside this it is now moving into the next phase in which health and care communities wishing to adopt ReSPECT can be offered access to the materials that they will need to start planning implementation. Interested organisations should join the Implementation Network.
“The ReSPECT process is all about thinking ahead with patients about realistic care options in a truly person-centred way. Ultimately the process aims to help people understand the care and treatment options that may be available to them in a medical emergency and enables them to make health professionals aware of their preferences”
Dr Juliet Spiller, Co-Chair of the ReSPECT Working Group & Consultant in Palliative care at Marie Curie Hospices, Edinburgh
“Ambulance clinicians often attend emergency calls and find that a person is unable to decide or communicate their wishes. The introduction of ReSPECT means we will know what treatment they have agreed they would or wouldn’t want in an emergency, and their views about whether they want to be taken to hospital or remain in their own home environment and under what circumstances.”
Cathryn James, Association of Ambulance Chief Executives and paramedic
“The RCN has worked in partnership on the development of ReSPECT and believes that it will support better discussions and encourage a truly person-centred approach to what can be an uncomfortable discussion. The role of nurses in understanding the process and the value of having, when practicable, an open and honest conversation with people about their wishes and views for their future care and treatment in the event of an emergency is vitally important. Nurses often play a pivotal role in helping people to understand their options. ReSPECT will help people to be truly involved in important decisions about their care and will ensure that staff are aware of these.”
Amanda Cheesley, Professional Lead for Long Term Conditions and End of Life Care, Royal College of Nursing
“We are delighted to be one of the first Trusts in the country to introduce ReSPECT. We have received positive feedback from both staff and patients and believe it will undoubtedly benefit our patients and facilitate shared decision-making around priorities of care and emergency planning.”
Catherine Baldock, Head of Resuscitation, Clinical Skills and Simulation at University Hospitals Coventry and Warwickshire NHS Trust
In 2014, the results of a systematic review of DNACPR decisions and documents were presented by the team from Warwick University at the Royal Society of Medicine. This meeting was attended by a group of more than 100 patients, clinicians (multidisciplinary and multiprofessional), healthcare commissioners and regulators. In the light of the evidence presented, the group agreed on a need to improve patient and family involvement in decision-making, to consider CPR decisions in the context of broader care and treatment, and to record the outcome on a form that would be used and recognised across the UK. Following this, over 30 individuals, representing both the public and professional organisations from across the health sector, formed a Working Group to develop a new approach.
The agreed aims of the Working Group were to develop a process and form that would:
- be acceptable to –
- patients and the public
- those important to patients
- health professionals
- other members of the public
- be underpinned by a good decision-making process
- promote good decision-making
- promote dialogue between individuals and clinicians
- be used across all care settings
- be used for individuals of all ages
- use evidence and experience from other successful initiatives
- consider decisions about CPR within overall goals of care.
The Working Group reviewed examples of best practice in the UK and internationally and a new approach was developed iteratively over two years. Development work included a public consultation, patient focus groups and usability testing. Responses to these informed further revisions of the ReSPECT form and other materials to support the process.
The ReSPECT process is a new approach to encourage people to have an individual plan to try to ensure that they get the right care and treatment in an anticipated future emergency in which they no longer have the capacity to make or express choices.
It is intended to respect both patient preferences and clinical judgement.
It is hoped that ReSPECT will be adopted gradually and widely throughout the UK, so that a person’s ReSPECT plan will be recognised and used wherever they are when an emergency occurs.
It was created because an approach that focuses only on withholding CPR in people who are dying or for whom CPR would offer no overall benefit has resulted in misunderstandings, poor or absent communication and poor or absent documentation.
Currently very few people discuss what type of care they would or would not want in an emergency situation.
The ReSPECT process initiates and supports conversations and shared decision-making between healthcare professionals and people (and their families or other carers), by following a simple process that:
- develops a shared understanding of a person’s condition, circumstances and future outlook
- then explores that person’s preferences for their care and realistic treatment in the event of a future emergency
- then goes on to making and recording agreed clinical recommendations for their care and treatment in a future emergency in which they have lost the capacity to make or express decisions.
The recorded succinct plan is intended to provide rapidly accessible information for professionals faced with an emergency, to help them to make immediate decisions that respect the person’s wishes and their clinical needs.
It includes a recommendation as to whether CPR should be attempted or not. However, ReSPECT is much more than a DNACPR form. It’s a person-centred plan which records treatments that should be considered as well as those that are not recommended. ReSPECT supports the wider advance/anticipatory care planning process.
ReSPECT has been made available for adoption by health and care communities in the UK. It aims to promote more conversations between clinicians and patients, and with those close to patients, in order to make agreed recommendations for a person’s care and treatment in a future emergency situation in which the person does not have capacity to make or express choices at the time.
The ReSPECT form is a summary plan that records recommendations to guide clinical decision-making in a future emergency; it is not a legally-binding document.
The ethical and legal principles that underpin the guidance in Decisions relating to cardiopulmonary resuscitation by the British Medical Association, the Resuscitation Council (UK) and the Royal College of Nursing are valid also for the ReSPECT process. ReSPECT supports and enhances recommendations within Decisions relating to cardiopulmonary resuscitation by promoting more advance planning, good communication, shared decision-making, and good documentation with cross-boundary recognition.
Implementation of ReSPECT is expected to be a gradual process, with different health communities adopting and implementing this using different timeframes, according to local or regional circumstances.
Health communities adopting ReSPECT are directly responsible for establishing an implementation group and developing an implementation plan (e.g. including training, resources, risks, interdependencies and audit). The ReSPECT guidance and materials do not lessen their responsibility in that regard.
Legal input to ReSPECT
The Working Group wishes to thank:
Alex Ruck Keene, an experienced barrister, writer and educator, who has kindly provided invaluable informal input to the Working Group.
Colin McKay, Chief Executive, Mental Welfare Commission for Scotland, who has kindly provided invaluable advice on issues of capacity and incapacity in relation to Scotland.