Frequently Asked Questions
- What is the ReSPECT process?
- Why has the ReSPECT process been created?
- Who has developed the ReSPECT process?
- Who is the ReSPECT process for?
- Does it matter how old the person is or that they have a disability?
- The person is currently fit and well. Can they have a ReSPECT form?
- What if a person doesn’t want a ReSPECT form?
- What if the person or their representatives disagree with a clinical decision?
- Can the ReSPECT form be used wherever the person is?
- Can the person’s family decide for them?
- Can the person see what’s written about them?
- Who should be involved in discussions when completing the ReSPECT process for children?
- What if a child already has an advance care plan (like a CYPACP that also has information about their wishes)?
- What happens to DNACPR forms or Treatment Escalation Plans (TEPs) that are already in existence?
The ReSPECT form, legal status and relationship with other areas
- Is a ReSPECT form legally binding?
- What legal advice has been obtained in the development of ReSPECT?
- Will the form be valid in all 4 nations as they have different capacity laws?
- Is the ReSPECT process approved by the Department of Health?
- Does the ReSPECT process supersede the national guidance Decisions relating to Cardiopulmonary Resuscitation published by the British Medical Association (BMA), Resuscitation Council (UK) (RC (UK)) and Royal College of Nursing (RCN)?
- Do the recommendations on the ReSPECT form have to be followed?
- Why is there no review date?
- Why is there no section on the ReSPECT form for the signature of the person or their relatives/legal proxy?
- Why doesn’t the form show the NHS logo?
- Can healthcare organisations add their name, logo or badge on to the ReSPECT form?
- The form states it is version 1.0 - I don’t like one of the sections, can I change it?
- What’s the difference between ReSPECT and an Advance Decision to Refuse Treatment (ADRT)?
- What’s the difference between ReSPECT and an Advance or Anticipatory Care Plan (ACP)?
- How does ReSPECT differ from an end-of-life care plan?
- How does ReSPECT link with Transforming EOLC programme, NHSI and AMBER Care bundle?
What will the Care Quality Commission be looking for?
- What if we (provider/organisation) have not adopted the ReSPECT process?
- What is the regulator looking for?
Community care and General Practitioners related
- Is it compulsory to use this new ReSPECT form in the community?
- Has all of this “been approved” by the BMA and the RCGP?
- Who can create one, and who should it be for?
- In the community we have a lot of patients in care homes. Will they all need one?
- Will I be expected to review a ReSPECT form as soon as a patient is discharged from hospital?
- We don’t have a colour printer, can the form be printed in black and white?
- Can the form be photocopied?
- Can the clinical details on the ReSPECT form be completed automatically from the electronic patient record?
- Is there a plan to digitise the form?
What is the ReSPECT process?
The ReSPECT process creates individualised recommendations for a person’s clinical care in emergency situations, including cardiorespiratory arrest, in which they are not able to decide for themselves or communicate their wishes. The process involves a conversation which:
- 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 make and record agreed clinical recommendations for their care and treatment in a future emergency in which they cannot make or express decisions at the time.
Why has the ReSPECT process been created?
For many years there has been debate over the use and design of DNACPR forms, together with a recognition of their limitations. The ReSPECT process was created following a systematic review of DNACPR decisions and documents. 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. ReSPECT aims to encourage patient and family involvement in decision-making, to consider recommendations about CPR in the context of broader plans for emergency care and treatment, and to record the resulting recommendations on a form that would be used and recognised by health and care professionals across the UK.
Who has developed the ReSPECT process?
ReSPECT has been developed by a Working Group comprising more than 30 representatives of the public and of professional organisations from a range of care settings and clinical specialties. Members of the Working Group have given a vast investment of time and energy to the project thus far. Much of the funding and facilitation of the project has been provided by the Resuscitation Council (UK), with support from the Royal College of Nursing. Invaluable design work has been provided by HELIX, through funding from the Oak Foundation. A substantial grant from Macmillan Cancer Support will provide public-facing and educational materials to support implementation of ReSPECT.
Who is the ReSPECT process for?
This process can be for anyone, but is especially relevant for people:
- with particular health needs that may involve a sudden deterioration in their health
- with a life limiting condition, such as advanced organ failure, advanced cancer or frailty
- at risk of sudden events, such as epilepsy or diabetic crisis
- at foreseeable risk of death or sudden cardiorespiratory arrest
- who want to complete the ReSPECT process and documentation for other reasons.
Does it matter how old the person is or that they have a disability?
No. The ReSPECT process and form can be used for individuals of all ages and ability, including children and young people.
The person is currently fit and well. Can they have a ReSPECT form?
Yes, they can, if they want to record their care and treatment preferences in case of an unexpected future emergency.
What if a person doesn’t want a ReSPECT form?
If a person does not want a ReSPECT form, their wishes should be respected. If there is a clear clinical view that a ReSPECT form could be of benefit to them, the reasons for them not wanting this should be carefully explored and documented. Try to avoid using language such as ‘refused’. Try to offer them further opportunities to discuss this again or to change their mind as and when they are ready to do so.
What if the person or their representatives disagree with a clinical decision?
In situations where the clinical team think that a particular treatment or intervention should not be initiated in an emergency because it will not work for the person (and that therefore a ReSPECT document is needed to record this) all attempts should be made to explain this to the person or their representative. This should be done sensitively and carefully by an experienced, senior clinician. A second opinion should be offered if they do not accept the clinical decision. If disagreement persists, full details should be documented in their health record.
If necessary legal advice and a ruling by the courts may be needed, but the need for this should be very infrequent if the person and those close to them have been properly involved in fully informed discussion.
Can the ReSPECT form be used wherever the person is?
Yes. For example, once it has been adopted in a health community it can be used in the person’s home, in hospitals, hospices, care homes, nursing homes and during ambulance journeys. For that reason, it is important that the person keeps it with them, and that it is readily available for professionals who may need to see and use it. The person should take it with them if they go out or travel away from their home, and make sure that their family, friends or carers know about it, and know where to find it in an emergency. Clinicians should help people to understand the importance of this.
If the person moves from one place to another (e.g. to or from home, hospital, hospice, care home, nursing home or from one hospital ward to another) it is good practice to review the ReSPECT recommendations to ensure that they remain valid, but a new form will not be not needed unless the recommendations change.
Can the person’s family decide for them?
If the person has capacity for the relevant decisions, they must be involved fully with the process of shared decision-making. Many people want to have the support of family, friends or carers in the discussion, and some may choose to have a family member or friend advise them on what choices to make.
If they don’t want their family or other carers to know about their condition or their choices, they should make sure that the healthcare team knows about this so that their wishes for confidentiality can be respected.
If a person lacks capacity and has appointed a legal proxy with powers to make decisions about life-sustaining treatments, the clinical team must involve them in making shared decisions on behalf of the person. Where there is no legal proxy, the clinical team must consult family or friends about a person’s situation and previously expressed views or wishes, in order to make decisions that are in that person’s best interests and for their benefit. However, the responsibility for making those decisions rests with the senior responsible clinician. The family must not be burdened with thinking that they are being asked to make these decisions.
Can the person see what’s written about them?
Yes. They can and should be encouraged to see what’s written about them. The ReSPECT form should stay with the person wherever they are, so it’s important that they know what recommendations are recorded on it, understand the reasons for them, and are comfortable with them.
Who should be involved in discussions when completing the ReSPECT process for children?
Ideally, clinical decisions relating to children and young people should be taken within a supportive partnership involving the child, his/her parents and the healthcare team. The team should involve the child to the extent that is appropriate for the individual circumstance.
If there is disagreement between the recommendations of the clinical team and the wishes of the parents and/or a child who is competent, every effort should be made to resolve this through discussion, explanation and a second opinion. If disagreement persists, the courts may be asked to make a decision.
What if a child already has an advance care plan (like a CYPACP that also has information about their wishes)?
Both documents work together, hand in hand. The ReSPECT form contains only a summary of recommendations to help clinicians to make an immediate decision about a child’s treatment in a crisis. Their advance care plan will have more detailed information to guide their care and treatment in other circumstances. The process of advance care planning provides an opportunity to discuss also the relevant elements of a child’s ReSPECT form, allowing the two documents to be completed together.
What happens to DNACPR forms or Treatment Escalation Plans (TEPs) that are already in existence?
Existing DNACPR forms and TEPs will continue to be effective and do not need to be replaced immediately. When healthcare communities implement the ReSPECT process there must be a robust plan to ensure that existing DNACPR forms or TEPs remain valid for a substantial period of overlap. ReSPECT is not just a replacement for a DNACPR form; the aim is to promote recording an emergency care plan by many more people, including many whose ReSPECT forms will recommend active treatment, including attempted CPR if it should be needed.
The ReSPECT form, legal status and relationship with other areas
Is a ReSPECT form legally binding?
No. The ReSPECT recommendations are to guide immediate decision-making by health and care professionals who respond to the person in a crisis. However, they should have and be prepared to justify valid reasons for overriding the recommendations on a ReSPECT form.
What legal advice has been obtained in the development of ReSPECT?
Alex Ruck Keene, an experienced barrister, writer and educator, kindly provided invaluable informal input to the Working Group. Colin McKay, Chief Executive, Mental Welfare Commission for Scotland, kindly provided invaluable advice on issues of capacity and incapacity in relation to Scotland.
Will the form be valid in all 4 nations as they have different capacity laws?
The aim is for ReSPECT to be a nationally available process and form. England and Wales have the same capacity law. As and when ReSPECT is adopted in Scotland some limited changes of wording may be made, but the ReSPECT process and basic structure of the form will remain the same and it is expected that a form completed in Scotland would be recognised and respected in England or Wales, and vice versa. New capacity legislation for Northern Ireland has been passed, but not yet introduced into law. Adoption of ReSPECT within Northern Ireland will not alter the ReSPECT process and basic structure of the form, and when the new law comes into force the need for any limited change to wording will be considered.
Is the ReSPECT process approved by the Department of Health?
The Department of Health has been aware of this project since it started and has received regular updates on its progress. In 2015, soon after the project had started, the House of Commons Health Select Committee published a report on end-of-life care in which they recommended that the Government review and consider the use of decisions about CPR in the context of people’s broader care, and review the systems used for documenting such decisions. Their report thereby endorsed the approach that the ReSPECT project had adopted.
Does the ReSPECT process supersede the national guidance Decisions relating to Cardiopulmonary Resuscitation published by the British Medical Association (BMA), Resuscitation Council (UK) (RC (UK)) and Royal College of Nursing (RCN)?
No. The objectives of ReSPECT support and enhance the recommendations in Decisions relating to cardiopulmonary resuscitation by promoting more advance planning, good communication, shared decision-making, and good documentation with cross-boundary recognition.
The BMA, RC (UK) and RCN have each been represented on that Working Group and contributed to the development of ReSPECT. The ethical and legal principles that underpin the guidance in Decisions relating to cardiopulmonary resuscitation are valid also for the ReSPECT process.
Do the recommendations on the ReSPECT form have to be followed?
In certain situations healthcare professionals may decide not to follow the recommendations on a ReSPECT form. For example, if someone has a ReSPECT form stating that they would not want to receive attempted CPR, clinicians may feel that they have to give treatment if someone stops breathing as a result of choking, if they believe that that was not the circumstance envisaged when the person decided that they did not want CPR.
Why is there no review date?
ReSPECT forms may be used in a range of situations. Frequency of review should be planned in each person’s individual situation (e.g. frequent review in an acute illness but not usually in an advanced, irreversible, terminal illness or stable long-term condition). A fixed review date risks:
- encouraging insufficiently frequent review for some people, especially those who are acutely ill and whose condition may change rapidly
- inadvertent ‘expiry’ (leading to disregard of the recommendations) for others whose recorded preferences and recommendations needed no review, and for whom repeated discussion and review would be burdensome.
Why is there no section on the ReSPECT form for the signature of the person or their relatives/legal proxy?
A ReSPECT form records clinical recommendations for emergency care arising from patient-centred discussions, and is neither an ADRT nor a ‘consent form’. It does not require signature by the person themselves or, if they already lack capacity when it is completed, by their representatives.
Asking a person with capacity to sign a form would be likely to be misinterpreted as suggesting that it has a legal status that is not the case. The recommendations on the form are to guide immediate decision-making by professionals present at the time of a crisis in which the person does not have capacity to make or express decisions. It is the responsibility of the health professionals completing the form to sign it, as they would sign any clinical documentation or record of discussion. By so doing the clinician confirms that they have both complied with capacity and human rights legislation, and complied with best practice in communication and shared decision-making, or where the latter was not practicable or appropriate to state the reasons.
It is also crucial to avoid family members of a person who lacks capacity mistakenly thinking that they are being asked to make decisions about life-sustaining treatment when their role is to guide best-interests decision-making by the senior clinician. Asking them to sign a form creates exactly the wrong impression and can impose a significant burden on families at an already difficult time.
Why doesn’t the form show the NHS logo?
ReSPECT is for wider use than just the NHS, and was not developed by or within the NHS. The aim is that it should be used and recognised by all communities and organisations involved in health and social care, including organisations such as care homes, hospices and private hospitals that are not managed by the NHS.
Can healthcare organisations add their name, logo or badge on to the ReSPECT form?
The form states it is version 1.0 - I don’t like one of the sections, can I change it?
Version 1.0 is the result of nearly forty iterations of the form to date and, following consultation and testing of the form, every section has been very carefully scrutinised. Initial feedback on use of the ReSPECT form in several different environments has been very positive, but it is acknowledged that, with wider usage, the potential for further improvement will be identified. Feedback can be given via the ReSPECT website. The Working Group will examine feedback and use it to guide any future revision of the ReSPECT process, form and supporting resources.
What’s the difference between ReSPECT and an Advance Decision to Refuse Treatment (ADRT)?
An ADRT is a legal document that people in England & Wales can complete to refuse treatment that they don’t want to receive. If it is completed according to the Mental Capacity Act 2005 it is legally binding on anyone who knows about it and who can be confident that it is valid and applicable to the situation that they are dealing with. A ReSPECT form is not legally binding and focuses only on making recommendations about care and treatment that might be considered in an emergency, when a person’s life may be at risk. A ReSPECT form can be used to draw attention to the presence of an ADRT and should contain relevant aspects within the summary recommendations for treatment and care. If you would like to find out more about ADRTs, or make one for free, you can do so at www.mydecisions.org.uk.
What’s the difference between ReSPECT and an Advance or Anticipatory Care Plan (ACP)?
A ReSPECT form is a very specific type of ACP that summarises the emergency care aspect of a wider Advance or Anticipatory Care planning process. ReSPECT records that information so as to make it accessible rapidly to professionals who need to make immediate decisions about care and treatment in a crisis.
An ACP is made with people who are able and willing to think ahead to a time in their illness when they may be unable to express their preferences. An ACP document is usually longer and more detailed than ReSPECT. It is not restricted to planning for an emergency, and is likely to contain information about preferences such as self-management plans, place of care preferences, funeral plans, understanding of prognosis, details of financial and welfare power of attorney.
ACP and ReSPECT are entirely complementary. They may be developed together, from the same conversations, or development of one may prompt people to discuss the other.
How does ReSPECT differ from an end-of-life care plan?
Use of and potential benefit from the ReSPECT process is not restricted to people with life-limiting illnesses or those in need of end-of-life care. A person’s ReSPECT form summarises for their individual situation treatments to be considered and those that would not be wanted or would not work for them in an emergency, including their death or a cardiac arrest.
End-of-life care plans record a more detailed plan, setting out a person’s individual care and treatment needs as they approach the end of their life, and are not limited to recommendations for use in an emergency.
For people approaching the end of life, the two plans can be complementary. Care must be taken to ensure that both types of plan address the specific needs of each individual.
How does ReSPECT link with Transforming EOLC programme, NHSI and AMBER Care bundle?
The NHSI Transforming End of Life Care in Acute Hospitals programme is about making the experience of care in hospital as good as it possibly can be for all those who need to be there. It includes a set of tools, models and approaches that can be used to improve services locally.
The AMBER care bundle ( www.ambercarebundle.org) is one of five programme enablers and sets out an approach for a person who is acutely unwell and their clinicians are uncertain whether they will recover, in part due to frailty or another underlying condition. An important component of AMBER is establishing preferences and wishes and deciding together how the person will be cared for if their condition gets worse. AMBER recommends that a treatment escalation plan be established, or where one of these already exists, it should be reviewed, considered, followed or adjusted as necessary. A ReSPECT form is a type of TEP, summarising treatments to be considered and those that would not be wanted or would not work in an emergency, including if the person dies or has a cardiac arrest. It was developed with reference to TEPs already in use and has incorporated the essential elements of these. Hospitals should consider using ReSPECT as their form of choice to record treatment escalation plans as part of the Amber Care Bundle.
What will the Care Quality Commission be looking for?
What if we (provider/organisation) have not adopted the ReSPECT process?
The organisation will need to demonstrate to the inspector that they have an equivalent local process and policy that covers the same issues.
What is the regulator looking for?
Essentially the regulator will be looking for a planned and organised approach, and clear recording of conversations around what people want or do not want in the event of emergency care, rather than a reactive approach. In addition, any completed form should be carried by the person, and accessible to all organisations across health and social care.
Points considered will be:
- A documented, planned process of care that all staff are aware of
- Evidence of respect for the provisions of the Mental Capacity Act 2005
- Evidence of discussion that reflects respect for good direct communication with patients and relatives
- Clear documentation within the health record of any discussion as well as a completed form/record that the individual carries or has access to
- Evidence that a process is in place that demonstrates that continuity of the care of the person is assured across boundaries for all organisations and providers for health and social care
- The leadership and organisational governance in place to achieve the above.
If anyone (individuals, organisations or providers) has any further queries regarding regulation they should address these to firstname.lastname@example.org and put ‘ReSPECT query’ in the subject line.
Community care and General Practitioners related
Is it compulsory to use this new ReSPECT form in the community?
It is up to each health and care community to decide if and how the ReSPECT process will be implemented. For areas that undertake implementation there will be a transition phase where existing DNACPR forms and processes for recording emergency escalation decisions within advance care planning processes will continue to be supported. During the transition phase from old to new some use of previous forms may have to be permitted. Ultimately, the intention is to have a single document that is recognised and valid anywhere in the country, by all health and care organisations so, whilst not compulsory, its use would be highly desirable.
Implementation of the ReSPECT process and form will require engagement and leadership from primary and secondary care providers in some health communities, but the implementation will have to involve ambulance services, care homes and social care providers and all the various community care providers.
Has all of this “been approved” by the BMA and the RCGP?
Many organisations including the BMA and RCGP have been represented on the Working Group and involved as stakeholders throughout the development process. However, it has not been the role or remit of any one organisation to approve or disapprove of the ReSPECT process which is “owned” jointly by all the stakeholders of the Working Group. Both the BMA and RCGP have been very supportive of the development of the ReSPECT process as this clearly has the potential to benefit patients by documenting their preferences for realistic care and treatment before they become unable to communicate in an emergency.
Who can create one, and who should it be for?
Anyone involved in the care of the patient can initiate the process, where this seems to be likely to be helpful. It does not have to be the GP or the hospital doctor and may, for example, be a specialist nurse involved in the person’s care.
Technically, ReSPECT could be completed for any patient at any time but, realistically, it will be used mostly for those whose health might deteriorate acutely. Initially, many will be completed during an acute admission to hospital, but as time goes by it is hoped that more people will have them completed when they are relatively stable, so that their ReSPECT forms can guide decision-making when they become acutely ill and hospital treatment is considered.
Initiation of ReSPECT across a range of community, hospital outpatient and inpatient settings will offer people the maximum opportunity to think ahead and plan for their care in a future emergency.
In the community we have a lot of patients in care homes. Will they all need one?
Ideally, over time, most and possibly all residents in a care home should be offered the opportunity to have a ReSPECT conversation and develop a plan. However, that must be done in a controlled and manageable way. Care home staff should not expect all their residents to have a ReSPECT form shortly after ReSPECT form is adopted in their locality.
CQC inspectors will not expect that to happen, though they may want to see an agreed plan for gradual implementation. Existing DNACPR forms, ACP documents or TEPs would continue to be valid. Some people may be discharged from hospital with a ReSPECT form completed, or transferred between institutions with one in place. Other people may have a ReSPECT conversation and a form completed at a time when their care and treatment is reviewed. The time period during which ReSPECT is introduced and previous approaches and documents are phased out will be determined as part of the implementation plan in each health and care community.
Will I be expected to review a ReSPECT form as soon as a patient is discharged from hospital?
Usually not. When a person is discharged from hospital with a ReSPECT form, the clinical team arranging discharge should check that the recommendations remain valid and consistent with the person’s condition and preferences at the time of discharge, and that the details are communicated to the GP. GPs may want to take the opportunity to review the ReSPECT recommendations with a patient at the next available opportunity, such as a planned clinical review.
A significant change in a person’s condition (for better or worse) should trigger a further conversation and review of the recommendations.
It is best to distinguish clearly between considering (with the patient and/or those close to them and/or other members of the health and care team) whether review of the recommendations is needed, and a review of the recommendations, which should involve the patient (or if they lack capacity, those close to them). The action needed should be decided according to each individual person’s situation. Remember that the GP is not the only member of the healthcare team who can review with a person the recommendations on their ReSPECT form.
I heard stories that patients are being sent these forms routinely with all the other preadmission documents, and I’m worried that they will start coming to me in my surgery to go through it all. It is not expected that people will be sent ReSPECT forms in advance in that way. They may be offered information about ReSPECT, but the form itself should be provided and completed by the healthcare professional who initiates a ReSPECT conversation and completes a form in discussion with a patient.
The local implementation plan should make provision for introduction of ReSPECT in ways that are achievable and that support both patients and their health and care professionals. One of the aims of ReSPECT is to promote more conversations between patients and their health professionals about advance planning for future emergencies. Planning ahead in this way and communicating a clear plan is an integral part of good medical practice and will help to deliver better care and better continuity of care. One of the strengths of the ReSPECT process is that it supports health professionals and patients in having a systematic conversation in order to develop their person-centred plan.
We don’t have a colour printer, can the form be printed in black and white?
We recommend that the ReSPECT form is printed in colour, because that makes it easy to identify and locate in an emergency requiring immediate decision-making. If the form is printed in black and white, for whatever reason, there is a greater chance that it will not be found and that immediate decisions will be made that do not consider the person’s previously expressed wishes and the agreed clinical recommendations.
However, the colour of the form does not invalidate a properly followed ReSPECT process, or the preferences and clinical recommendations recorded on a form that has not been printed in the recommended colour format.
Can the form be photocopied?
We recommend that the ReSPECT form is not photocopied for clinical use, but may be photocopied for audit or administrative purposes and labelled clearly “COPY ONLY – NOT FOR CLINICAL USE”.
This is to try to avoid a situation where an original ReSPECT form has been cancelled and replaced because of changed circumstances, wishes or recommendations, but a copy of a previous version has not been cancelled or destroyed, and is used to guide decision-making as if it were the current version.
Can the clinical details on the ReSPECT form be completed automatically from the electronic patient record?
No. At present the form can be printed on paper and completed by hand or used as a fillable pdf which can then be printed so that the person can keep it with them.
It is important that the ReSPECT form is a succinct summary, arising from the ReSPECT conversation. In discussing and achieving a shared understanding of a person’s condition, the items that should be recorded in section 2 of the form are the specific points that a professional would need to know immediately when faced with an emergency. Transfer of more detailed information about, for example, all their past history and medication history, is unlikely to be included in the conversation and is likely to detract from the purpose of ReSPECT.
Is there a plan to digitise the form?
The ReSPECT process has been designed initially as a paper-based form that remains with the person. However, it is anticipated that the form will become electronic over time. With the development of shared record systems across local health and care communities, the benefits of sharing a ReSPECT form electronically and being able to view and update it from different care settings should improve the ability to share current, accurate information rapidly, which is particularly important in urgent and emergency care situations.
We are working with different organisations and communities across the country to explore options for generating ReSPECT forms electronically and making them available across care settings, including access by both 111 and the ambulance service, as well as to the person themselves.
In areas where electronic end-of-life-care planning systems are already in place, the ReSPECT form should be considered to run alongside the electronic system and consideration should be given to how these can then be integrated.
We would be keen to hear from organisations that are working on creating electronic forms and are willing to collaborate.