Recommended Summary Plan for Emergency Care and Treatment
Go Back
Go Back
Go Back
Go Back
Learning objectives – In this module you will learn:
Remember, to save content to your cards press this symbol:
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 healthcare professionals responding to that emergency with a summary of recommendations to help them to make immediate decisions about that person’s care and treatment.
DeleteReSPECT stands for Recommended Summary Plan for Emergency Care and Treatment and it works like this:
ReSPECT starts with someone who may benefit from or want to participate in the ReSPECT process. A two-way discussion then takes place between the person and the healthcare professional to enable their current and future state of health to be discussed and their priorities of care to be voiced.
The wishes and recommendations are documented on a ReSPECT form by the healthcare professional.
The form is kept by the person and should travel with them.
The plan should be reviewed and can be modified whenever the person’s circumstances or condition changes, or if they want to reconsider the recommendations.
[0:42] In current UK practice, there are many different do not attempt CPR and treatment escalation plan forms. Some are specific to hospital trusts and local communities and they are usually clinician-led. ReSPECT creates a unified nationally recognised process that supports shared decision-making between a person and their healthcare professionals in making anticipatory recommendations about emergency care and potentially life-sustaining treatments, including CPR. ReSPECT is complementary to any wider process of advance or anticipatory care planning.
[1:16] ReSPECT is a different kind of emergency planning process because:
ReSPECT is ‘proactive’ and not ‘reactive’
The recommendations are created through conversations between a person and their healthcare professional when they are well enough to make these decisions for a future emergency in which they are unable to make or express choices. The process encourages more people to make plans, even those who are currently well.
ReSPECT is personalised
The process has been designed to be person-facing, including parts of the form which seek interaction with the person to record their priorities of care. It focuses on what is important to that person and not only on clinical recommendations.
ReSPECT involves more than just the person
Those close to the person, such as family and/or other representatives, can be involved in the process and should be consulted if the person cannot contribute to the conversation.
The multidisciplinary healthcare team can provide an agreed assessment of the person’s health condition and treatment options.
Involving others in the discussion enables them to hear the person’s wishes first-hand and understand the basis for the recommendations recorded.
ReSPECT is about more than just a CPR decision
The process considers broad plans for a person’s emergency care and treatment, identifying care and treatments that could help them achieve their goals of care, treatments they may not want or that may not work for them. These may include being admitted to hospital in an emergency, or being admitted to intensive care. See the ‘Further Information’ section for examples of some other treatments that may be considered.
ReSPECT applies nationally and in all settings
Whereas some current DNACPR and treatment escalation plan forms are only applicable within a certain organisation or community, the ReSPECT process is applicable anywhere in the UK.
The form accompanies the person wherever they are and go, such as home, the Emergency Department, hospital wards, care home, hospice and when using an ambulance or other transport services.
Once the recommendations are recorded they travel with the person and can be updated when necessary.
ReSPECT has been developed by national experts and members of the public
ReSPECT has been developed by a Working Group of over 30 individuals representing the public and a number of professional organisations from a range of care settings and clinical specialties.
The key stages of the ReSPECT process are:
1. Understand – To establish a shared understanding of the person’s state of health and medical conditions, and what they might reasonably expect in terms of progressive deterioration, abrupt health crises and longevity.
2. Set goals – To establish what is important to the person, and what they see as the main focus for their care and treatment – balanced between sustaining life and maximising comfort – this allows people to agree their goals of care.
3. Plan – To discuss the treatments that should be considered for a person as well as treatments which they may not want or that may not help them. The recommendations are recorded on a ReSPECT form.
And… though ReSPECT is not legally binding, the recommendations made must be considered when making decisions about the person’s care and treatment and draw attention to any other legally binding documents they may have.
A change of culture is needed to think about emergency care planning in this way, which will take time to embed among the public and among professionals.
Delete“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”
“ReSPECT works beautifully alongside the advance care planning work that’s gone on across the country – and there are a number of protocols and forms in use at the moment. The Children and Young Person’s Advance Care Plan (CYPACP) is one of the most widely used forms; and the ReSPECT process and form are complementary to that. ReSPECT presents the key emergency information that may be required in an Emergency Department, or wherever the child or young person first presents, without wading through what can be a very complex document.”
Some recommendations for care and treatment, that may be considered when having a conversation, and completing a ReSPECT form include:
Consider listing those things that are recommended initially, followed by those that are not recommended.
DeleteWhat 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 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 is required.
What is 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 do not 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.
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.
What is 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.
What is the difference between ReSPECT and 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. End-of-life care plans record 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.
What if a child or young person 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.
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. If the form is printed in black and white, 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.
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. With the development of shared record systems across local health and social 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 and accurate information rapidly, which is particularly important in urgent and emergency care situations.
A digital version of ReSPECT, which can be made available across care settings, including access by both 111 and the ambulance service, as well as to the person themselves, is currently being developed. Where electronic end-of-life care planning systems already exist, the ReSPECT form should run alongside these, or be integrated with them.
DeleteReSPECT has been developed by over 30 individuals representing both public and professional organisations from across the health sector, including service users and statutory organisations.
The ReSPECT process and form were developed iteratively over a period of two years. The project included public consultation, patient focus groups and usability testing, and was informed by best practice in the UK and internationally. The resulting process and form were designed to:
ReSPECT was created by representatives of the public and of:
“As a lawyer who spends a lot of time thinking about how the mental capacity act interacts with clinical practice, ReSPECT seems to be absolutely invaluable because of what it is allowing people to do. It is moving away from thinking solely about do not resuscitate notices, into thinking about a much more holistic picture about what people want and what they don’t want when it comes to treatment. The more we can make that conversation part of routine clinical practice the better.”
Alex Ruck Keene, practising barrister, writer and educator specialising in mental capacity law
The ReSPECT form is not legally binding. The ReSPECT recommendations are designed to guide immediate decision-making by health and care professionals who respond to the person in a crisis, and who must have valid reasons for overriding the recommendations on a ReSPECT form.
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.
Will the form be valid in all 4 nations as they have different capacity laws?
ReSPECT is a nationally available process and form. England and Wales have the same capacity law. 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 was passed in 2016 and has many provisions in common with the law in England and Wales, but has not yet been implemented.
DeleteRM is a 22-year-old student who is involved in a road accident. He is found unconscious and brought to the nearest hospital. A member of the trauma team who examines RM in the Emergency Department finds paralysis of his left arm and leg and suspects several fractured ribs.
Despite treatment with oxygen, RM is becoming hypoxic and ventilation treatment is started. A CT scan shows a subarachnoid haemorrhage. He is transferred to the Intensive Care Unit (ICU) for continuing treatment. The neurosurgeons examine the CT images and recommend that RM is transferred to their neurological centre for further assessment and consideration of possible surgery.
RM’s parents attend the ICU and are devastated to see their son in these circumstances. The ICU consultant explains that their son may need an operation to reduce the effects of the bleeding into his brain, or to prevent further bleeding.
RM has a life-threatening condition that could deteriorate suddenly at any time, so planning for such an emergency should not be delayed. Having a plan in place is crucial to guide decision-making by the ambulance clinicians if he deteriorates in transit to the neurosurgical centre.
As mentioned previously, RM has a life-threatening condition that could deteriorate suddenly at any time, so planning for such an emergency should not be delayed. Having a plan in place is crucial to guide decision-making by the ambulance clinicians if he deteriorates in transit to the neurosurgical centre.
A person being unconscious or lacking capacity for some other reason is not a barrier to applying ReSPECT. Their legal proxy (if they have one) or people close to them must be involved in the ReSPECT process, acting for their benefit and in their best interests.
A person being unconscious or lacking capacity for some other reason is not a barrier to applying ReSPECT. Their legal proxy (if they have one) or people close to them must be involved in the ReSPECT process, acting for their benefit and in their best interests.
Sometimes the ReSPECT process may be triggered by a request from the person themselves or their family or other representatives, but in a sudden severe illness of this nature RM’s family are unlikely to think of asking for it. The healthcare team should be considering and offering ReSPECT for anyone taken suddenly or seriously ill.
TM is a 76-year-old lady. Her husband died 7 years ago, having been severely disabled by a stroke for his last 2 years of life. She has decided that, although she still enjoys life, lives independently and would like to have treatment for reversible conditions, she would not want to receive life-sustaining treatments, including CPR, ventilation or renal dialysis. She has explained her decision to her daughter who is supportive. TM visits her GP to ask how she can make sure that her wishes are known.
Whilst a DNACPR form may help to ensure that she does not receive CPR against her wishes, it will not address her wish to avoid ventilation or renal dialysis. A ReSPECT form offers the opportunity to record not only those treatments that she doesn’t want, but also those that she would want to be considered for.
It is important also that she is offered information about how to make a legally binding refusal of specific treatments (Advance decision to refuse treatment – ADRT – in England and Wales) and the practical ways of ensuring that her refusal is acted on (e.g. by having a ReSPECT form that draws attention to the ADRT).
If she has seen a doctor at the first visit, it may be appropriate for the conversation and form to be completed at that visit. However, some people may want more information, and time to consider before having a ReSPECT form completed, so initial explanation and provision of an information leaflet, followed by a further discussion will be correct person-centred care for them.
If an advance nurse practitioner is skilled in having sensitive conversations about the ReSPECT process, that nurse practitioner could have the conversation with TM and complete a ReSPECT form, before having it countersigned by the GP as the senior responsible clinician. If not, the nurse practitioner should be able to provide TM with some initial information about ReSPECT and to come back for a discussion with the GP.
TM has thought this through and discussed it with her daughter, so has come for help in ensuring that her wishes are respected. Her daughter does not need to be present for this discussion.
Learning objectives – In this module you will learn:
Remember, to save content to your cards press this symbol:
Anyone can participate in the ReSPECT process…
Even if they are currently well. Particular consideration should be given to the following:
People with a long-term condition, life limiting condition or disability who may deteriorate suddenly or are at risk of a sudden event.
People who were otherwise well who have deteriorated suddenly.
People at foreseeable risk of death or sudden cardiorespiratory arrest.
People having an intervention, such as major surgery.
People who are nearing the end of their life.
[0:34] The ReSPECT process is best started and the form completed when a person is relatively well…
So that, if a crisis occurs, their preferences and agreed clinical recommendations are already known and recorded. However, some people may develop an unexpected sudden, severe illness, so if such an emergency occurs in someone with no ReSPECT form, consider discussing ReSPECT and completing one as soon as is reasonably possible.
[1:00] The ReSPECT process can be used for people of all ages.
If it is used for a child or young person, it is crucial to ensure appropriate parental or legal guardian involvement.
[1:13] Any professional involved in a person’s care can initiate the ReSPECT process with endorsement from the senior clinician.
Any health or social care professional who knows the person, their circumstances, their family and other representatives may be the most appropriate to have the conversation.
It can be a GP, a hospital doctor or a senior nurse. Sometimes it can be helpful for a second professional to be involved. After discussing and documenting the agreed plan, the professional who completed it must sign it. If they are not the senior clinician in charge of the person’s care, that senior clinician must be aware and approve of the plan, and should sign to endorse it as soon as possible.
AB is a 61-year-old lady who has been recently diagnosed with an advanced recurrence of pancreatic cancer. She lives with her husband, who is visually impaired; she is his full-time carer. Her husband is known to the social services team. She has no close family but has a network of friends.
Following three cycles of palliative chemotherapy, which she found very unpleasant, a repeat CT shows that the cancer is not responding. Her oncologist discusses the option of second-line chemotherapy, but she decides that she does not want to have this.
Whilst she may not want further treatment to delay progression of her cancer, the focus should always be on her goals of treatment. These may be treatments that will maximise her comfort and enjoyment of whatever time she has left.
Referral to a palliative care team can help to ensure that she has access to those elements of care and treatment that will help to achieve her goals.
The ReSPECT process can help to ensure that her wishes and preferences are taken into account in the event of a future emergency in which she cannot make decisions or choices. The professional best placed to guide her through the process will depend on the person available who knows her and her family.
It is rarely appropriate to do this over the telephone. Whilst CPR may not prevent the death of a person dying from advanced cancer, there is a requirement to explain this to a person before recording a DNACPR recommendation. This is best done by following the ReSPECT process - ensuring that they understand their condition and prognosis, agreeing their goals of care, and then focusing on recommendations about treatment that will achieve those goals of care.
Ensuring that her husband’s social worker is aware of her situation and outlook will help to ensure that timely plans are made to address his care needs as her condition progresses and she is less able to care for him.
ReSPECT is complementary to a more detailed advance care plan, in which she can record other preferences for her care as she approaches the end of her life and after her death.
Learning objectives – In this module you will learn:
Remember, to save content to your cards press this symbol:
The ReSPECT process is designed to empower the person and the clinician to have a two-way conversation about priorities of care and recommendations for emergency treatment. Some aspects of the ReSPECT conversation may be difficult, such as discussing limits to care and cardiopulmonary resuscitation. The following tips aim to help to prepare for a conversation guided by the ReSPECT process.
DeleteIdeally, this should be a senior clinician looking after the patient who knows them well, such as their lead consultant or a senior trainee, GP or a senior nurse. In a more urgent situation, the senior clinician holding clinical responsibility for the person should lead the conversation. Involving other colleagues with relevant expertise or significant input into their care may be helpful e.g. critical care outreach or palliative care.
DeleteThis should be the person, and where possible, their family and other representatives.
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 or other representative in the discussion, and some may choose to have a family member or other representative advise them on what choices to make. If you are asked to speak to the person’s family or other representative alone, and the person has capacity, then seek their permission first. If they do not want their family or other representative 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 (e.g. with power of attorney for health and welfare), 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.
DeleteThis will vary with the setting, but where possible, it is useful to have another team member with you, so that they know what was said and can reiterate the information to maintain continuity and consistency, and you can reflect on the conversation together. Having a member of another discipline present demonstrates that the team is agreed on the advice and recommendations given, and provides another perspective to support the person’s understanding and involvement in decision making. This may also be an opportunity to train junior members of the team.
DeleteIdeally, it is good to have these conversations early and in a non-urgent situation, when the person is able to make decisions and express their priorities. In the community or in an outpatient setting, there may be an opportunity to complete the ReSPECT process over more than one meeting. However, there may also be situations when recommendations are needed relatively urgently; at these times the conversation should be initiated and completed at once.
DeleteWhere possible find a quiet and private place for the conversation. Sit so you are level with the person and other people in the room. It is important that you have the time to have the conversation, and not feel rushed or pressured. Try to turn off phones, bleeps or pagers, or where this is not possible, warn that there may be interruptions.
DeleteExplain that the aim is to reach a shared understanding of the person’s current and future health status and to agree and make recommendations about what care should be implemented in a future emergency situation in which they are unable to make or express choices.
“We would like to talk to you about how you are, what has been happening recently, and what might happen in the future, so that we can make sure that you receive the best care and treatment.”
DeleteIt is important to establish how much information the person wants, and to give information in line with their wishes. Ask them if they would like to include anyone else in the conversation.
“These conversations are not easy; are you OK to continue?” and “is there someone else that you want to involve who knows about what you think or want?”
“Sometimes people think about what might happen if they were less well in the future; is that something that you would like to talk about?”
DeleteEstablish what the person, and those with them, know already about their health and current situation, and what that information means to them. Where appropriate, you may need to correct misunderstandings at this point.
“Can you tell me what you understand about your illness?”, “how do you feel things are going?” or “how do you feel things have been in comparison to a month ago, or over the last few months?”
DeleteExplore whether the person, and those with then, have thought about what might happen in the future, and what they would want in an emergency situation.
“What are the things that we need to know about you?”, “have you thought about what is important to you going forwards?”, “have you thought about what you would want in the future?” or “when you think about the future, what matters most to you?”
When there is someone representing the person, use questions like: “What do you think they would want?” or “have they ever expressed any wishes beforehand?”
DeleteExplain the current clinical situation, what situations might happen in the future, and what treatments are and are not appropriate for the person in those situations.
“You responded so well to the treatment, we need to make sure that if this situation arises again, everyone knows what to do” or “the treatment helped this time, but we are worried that at some stage you may become more unwell – is this something that you have thought about?” or “unfortunately, we do not think that giving you more treatment is going to help, so we need to think about what we can do for you, what you would want in that situation, and what treatments or care we can give.”
DeleteAvoid medical jargon and use plain language to de-medicalise and de-mystify healthcare, particularly when in emergency situations. Plain language means that the listener or reader should understand from the first time they hear or read a communication.
Examples: instead of “oral” use “by mouth”, instead of “modify” use “change”, instead of “optimal” use “best way.”
DeleteDo not assume that anyone understands everything that has been said to them. Some people may lack the confidence, experience, or are too unwell to ask clinicians for explanations or to clarify statements.
‘Teach back’ is a simple technique where you ask a person, including if there is an interpreter, to explain what has been said in their own words. If they do not articulate the conversation back correctly, explain again and repeat teach back. This may need to be repeated a few times. In some cases, it may be helpful to ask another healthcare professional to have the conversation. Diagrams and other forms of media can be used to aid understanding.
“I would like to check that we have understood each other, so can you tell me, in your own words, about what we have been discussing?” or “what will you tell your family when you get home about what we have discussed?”
DeleteTo ensure that a person and those with them understand the what has been discussed and what will be recorded on the ReSPECT form, summarise the conversation, giving them the opportunity to comment on or confirm the recommendations. Ask them if there is anything else they would like to discuss.
DeleteSome people may not want to have a conversation – in this case, you should support them in their decision until they are ready to begin discussions. If a decision is needed more urgently, you should explain this to them and explain the need to plan in order to ensure they receive the best care possible. In a less urgent situation, you should support the person until are ready to discuss their wishes.
DeleteIf a person does not want a ReSPECT form then 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.
DeleteIn 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, their family or their representatives. 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.
DeleteIt is important to share the information following the conversation. This should be done by documenting a summary on the ReSPECT form, a more detailed documentation in their health records or in some cases a clinic letter, and informing the wider health and care team. If you had someone with you during the conversation, they can relay the information to their teams to ensure everyone is aware of the plan.
It takes time to do the documentation – however the better the documentation, the better the shared information.
DeleteEveryone is different in their approach and style for these conversations. You evolve your own style with time and experience. Just like learning a practical procedure, skills for having difficult conversations need to be practiced and it is helpful to reflect and listen to feedback.
As those who work in health and social care, we can learn a lot by observing our more experienced colleagues and learning from conversations that went well and those that did not. If you are leading the conversation and had other team members in the room with you, they may be able to provide feedback. You can reflect on what aspects went well, what did not go so well, how certain points were phrased, and if those in the room understood what was being said.
DeleteRM is a 22-year-old student who is involved in a road accident. He is found unconscious, brought to the nearest hospital and found to have a subarachnoid haemorrhage. He is intubated and ventilated transferred to the Intensive Care Unit (ICU).
RM’s parents arrive and the ICU consultant explains that their son may need an operation to reduce the effects of the bleeding into his brain, or to prevent further bleeding. The consultant considers the ReSPECT process.
The ICU consultant has already met the parents, so is well-placed to lead the conversation.
Having a second health professional, such as a nurse, can help to provide support.
In this context RM’s parents must be involved in the conversation
The prognosis is uncertain, so this is too early to consider involvement of a transplant coordinator. However, sensitive exploration of RM’s views and wishes about transplantation should form part of the ReSPECT conversation, and those views or wishes should be recorded in section 2 of the form.
Involvement of the GP is unlikely and may not be especially helpful, as RM does not have any health problems for which he has seen his GP recently.
RM is a 22-year-old student who is involved in a road accident. He is found unconscious, brought to the nearest hospital and found to have a subarachnoid haemorrhage. He is intubated and ventilated transferred to the Intensive Care Unit (ICU).
RM’s parents arrive and the ICU consultant explains that their son may need an operation to reduce the effects of the bleeding into his brain, or to prevent further bleeding. The consultant considers the ReSPECT process.
An ICU consultant in an organisation that is using ReSPECT should be familiar with the process. If any unexpected question arises during the process, the website may provide an answer.
Some people may find it helpful to read information about ReSPECT before having a ReSPECT conversation with health professionals, but this is not essential, and may not be possible in some circumstances (such as a critically ill person) where there is limited time available for the conversation.
Discussing the ReSPECT process and achieving a shared understanding of a person’s condition is essential. This includes being honest about their condition and prognosis and about any uncertainty. It is important to support people to help them to cope with such information.
The entries on the form are a summary of what was discussed and agreed during the conversation. Therefore, the only part of the form that can be completed before the conversation is detail of the person’s identity in section 1.
IA is a 65-year-old retired civil engineer from Bangladesh. He lives with his wife, who speaks little English, and two of his four children. He has advanced kidney failure and agrees to start dialysis.
A dialysis nurse specialist tells IA about ReSPECT and offers him an information leaflet, but he says that he does not want a leaflet or to discuss ReSPECT and have a form at present.
People may have different reasons for declining discussion or information about any aspect of their health. These include cultural and religious attitudes and beliefs.
Another reason for declining may be limitations in their ability to understand health information, or to read or understand information in the format offered. Use of different formats, including easy read formats, translations into other languages and videos may help to overcome some of these difficulties.
If they do not want a discussion or further information at this time, their wish must be respected and it would not be appropriate to complete a ReSPECT form without their involvement.
A note should be made in their health record that ReSPECT has been offered, and that they are not ready to discuss it yet, but they should be assured that discussion will be offered if they decide later that they would like that.
As with the previous question, a note should be made in their health record that ReSPECT has been offered, and that they are not ready to discuss it yet, but they should be assured that discussion will be offered if they decide later that they would like that.
IA is a 65-year-old with a history of type 2 diabetes and advanced kidney failure receiving dialysis. A dialysis nurse specialist tells IA about ReSPECT and offers him an information leaflet, but he says that he does not want a leaflet or to discuss ReSPECT and have a form at present.
Six months later, he has a heart attack (non-ST-elevation myocardial infarction). He receives treatment in the Coronary Care Unit and an echocardiogram shows that the pumping action of his heart is severely reduced. The cardiology registrar suggests that he reconsiders having a ReSPECT form, so that the nurses and other team members would know what to do if he had a sudden further problem with his heart and could not make decisions at the time. He decides that he would now like this.
Having obtained his agreement to discussing ReSPECT, the cardiology registrar may be best placed to continue the conversation. Having another health professional present as well, such as a member of the kidney team, can sometimes help explain things to people in ways that they understand and provide expert knowledge about both his heart and kidney conditions.
Alternatively, IA may feel that his dialysis nurse knows him and his family better than the registrar. Whoever has the conversation with him must have the necessary skills and knowledge to explain things clearly and answer his questions.
Alternatively, IA may feel that one of the coronary care nurses knows him and his family better than the registrar. Whoever has the conversation with him must have the necessary skills and knowledge to explain things clearly and answer his questions.
Whoever has the conversation with him must have the necessary skills and knowledge to explain things clearly and answer his questions.
Realistically, it is unlikely that a GP will be able to come to the hospital to have the ReSPECT conversation.
In this situation, the purpose of ReSPECT is not to discuss palliative care but to reach shared agreement and record recommendations on what care and treatment may help him to achieve his goals of care, and what types of care or treatments he would not want or would not work for him.
IA is a 65-year-old retired civil engineer from Bangladesh with a history of type 2 diabetes and advanced kidney failure receiving dialysis. He lived with his wife, who speaks little English, and two of his four children.
Six months later, he has a heart attack (non-ST-elevation myocardial infarction). He receives treatment in the Coronary Care Unit and an echocardiogram shows that the pumping action of his heart is severely reduced. The cardiology registrar suggests that he reconsiders having a ReSPECT form, so that the nurses and other team members would know what to do if he had a sudden further problem with his heart and could not make decisions at the time. IA feels ready to discuss this.
People should be assumed to have capacity unless there is reason to suspect a disturbance of their mind, so a formal capacity assessment is not needed unless such a disturbance is suspected.
Ideally, all sensitive and important conversations should take place in a setting where people can be comfortable, and where distractions are kept to a minimum, which may be around the bed. Finding a separate room is not always possible.
Ensuring that the chance of interruption (e.g. by telephones or bleeps) is kept to a minimum should be achievable.
Delaying a ReSPECT conversation to a time when all other family members can be present may leave a person without an agreed emergency plan for a substantial time. Some individuals will insist that certain of their family or friends must be there; however, the participants in and timing of the conversation should be dictated by what is right for each individual.
Whoever has the ReSPECT conversation with IA must have a clear understanding of his condition and its treatment and prognosis. Ideally this should be informed by discussions among the multidisciplinary healthcare team.
Liaison between cardiology and renal teams will be especially important. For example, the new finding of severe left ventricular impairment may increase the risk and reduce the potential benefit of transplant surgery, so it will be important that this is considered and explained clearly to IA before he will be able to contribute to shared decision-making on a plan for a future emergency.
Learning objectives – In this module you will learn:
Remember, to save content to your cards press this symbol:
Clearly showing the…
Rationale: To ensure that someone using the form in an emergency can have absolute confidence that it belongs to the correct person.
Method: Insert clearly the person’s full name, date of birth and address. Insert the date on which the form is completed. Always include the NHS or CHI number unless they do not have one. Add the name the person would like to be addressed by.
Rationale: To explore and achieve a shared understanding of their present state of health and what they may expect, and to record details of other relevant documents.
Method: Before starting a ReSPECT conversation with a person (or with their family or other representatives if they lack capacity), make sure that you have the clearest possible understanding of their current state of health, based not only on reference to available records, but also discussion with other members of the health and care team. Insert here a summary of the medical background to inform recommendations that will follow (e.g. relevant diagnoses, present state of health, expected prognosis, communication difficulties and how to overcome them). Record relevant detail and the location of documents such as Advance Decisions to Refuse Treatment, advance care plans, advance statements, or organ donor cards.
Rationale: To help people understand the balance between focusing on treatment predominantly for comfort and treatment predominantly to sustain life, and to identify and agree priorities for their care, and to record the things most important to them in their life.
Method: Based on the shared understanding of their current situation and state of health that has been achieved, ask the person to consider the goals of care and treatment in their circumstances and to describe their priorities for their care. If they and you find it helpful, use the scale to help them to understand the balance between a focus on comfort and a focus on sustaining life, and how that balance may change. If they wish, they can mark the scale to indicate their current balance, but this is largely for their reference and not for use in guiding future decisions in an emergency.
Prioritise sustaining life… Prioritising life-sustaining treatments does not mean that the person would not receive treatment to control symptoms, but they may want to be considered for some life-sustaining treatments that involve a degree of discomfort or risk.
Prioritise comfort… Prioritising comfort indicates that the person wants primarily those types of care and treatment whose purpose is to control symptoms and provide comfort.
The second box is to allow people to have recorded one or two aspects of their life that are most important to them.
Rationale: To record recommendations to guide immediate decision-making in a future emergency.
Method: Based on the priorities that have just been discussed, start by signing the agreed goal of care as either focusing on life-sustaining treatment or focusing on symptom control. Sign only the appropriate box.
Record clear recommendations about the types of care or realistic treatment that the person would want to be considered for and that could help to achieve their goals of care, and those that they would not want or that would not work in their individual situation, such as admission to hospital or the intensive care unit (see ‘What is ReSPECT?’ if you want to know more). Recommendations can be added to clarify certain situations (such as focus on life-sustaining treatment but does not want blood transfusion, or focus on comfort but consider non-invasive ventilation).
There is then a specific space to record whether or not attempted CPR is recommended, and for children only, to recommend modified CPR. Sign one of these boxes only. Remember that there must be a presumption in favour of involvement of the person (and/or their family or other representatives) in the decision-making process unless that would cause the person harm. If CPR would not work and is not being offered, refer to the agreed goals of care and explain why CPR would not help to achieve those goals.
Record of whether or not…
Rationale: To record whether or not a person has capacity to participate in making the recommendations in their plan, and whether or not they have a legal proxy who must be consulted if they lack or lose capacity.
Method: Early in the process you will either have accepted that the person has or lacks capacity.
Remember that an adult must be assumed to have capacity unless it is established that they lack capacity. If you suspect that an adult person lacks capacity for the decisions needed in the ReSPECT process, perform a formal capacity assessment and document it fully in the person’s health records. Answer ‘yes’ or ‘no’ in the first box. Then establish whether or not the person has a legal proxy and complete the second box, recording details of any legal proxy in section 8.
Children and young persons
In the case of a child or young person, establish who holds parental responsibility.
Insert details of any such proxy or person with parental responsibility in section 8.
Confirmation that the process and form have been completed lawfully in accordance with capacity and human rights laws, and documentation of who was involved in discussing and agreeing the recommendations recorded.
Rationale: To confirm that the process and form have been completed lawfully in accordance with capacity and human rights laws, and to document who was involved in discussing and agreeing the recommendations recorded.
Method: Circle at least one of the statements A, B, C, D (more than one may apply). For example, both A and B may apply for some children and young people, and both C and D may apply for some people who lack relevant capacity.
If D is circled, indicating there has been no shared decision-making with the person themselves (or no involvement of family or other representatives of a person who does not have capacity) you must use the red-bordered box to provide reasons for this. Make sure that these reasons are detailed fully in the health record, together with a clearly defined plan to involve the person or their representatives as soon as this is possible or appropriate.
Then record the date(s) of the ReSPECT conversations, and the names and roles of those involved. Make sure that detail of the discussions is documented in the health record. Record on the form where to find that further detail.
Validation of the entries on the form and endorsement by the senior responsible clinician.
Rationale: To validate the entries on the form and ensure that the recommendations are endorsed by the senior responsible clinician.
Method: The professional who completes the ReSPECT form must add a legible signature and legible name and registration number, and the date and time. If they are not the senior responsible clinician (i.e. GP, consultant or a senior nurse), then the senior responsible clinician should be informed and agree to the plan’s completion. They should review and endorse the recommendations by adding their signature at the earliest possible opportunity. In some circumstances, they may consider further discussion and possible revision of the plan. Refer to local policy for the timeframe in which the form needs to be countersigned by the senior responsible clinician to remain valid.
Rationale: To record contact details of key people to contact in the event of major deterioration, imminent death, or any change in the person’s condition that may warrant reconsideration of the previously recorded recommendations.
Method: Record the contact details in the boxes provided.
Rationale: For future use to record when the form has been reviewed and the recommendations confirmed to be still valid.
Method: This section should be left blank at the time of initial completion of the plan. Review may be triggered if the person or their representative asks for this, the person’s condition has changed, or if the person is moving from one setting to another i.e. being discharged from hospital.
The recommendations on the ReSPECT form do not have a defined expiry date, as the need for review must be considered carefully for each person at each stage of their clinical progress. In an acute illness, very frequent review is likely to be needed, so you should plan for this.
Once a form is completed, 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.
At home the ReSPECT form should be kept somewhere accessible, so that their family or other representatives know exactly where to find the ReSPECT form if an emergency occurs. In a hospital, care home, hospice or other organisation the form must be stored in a clearly defined and rapidly accessible place, whether it is in paper or electronic format.
DeleteIf 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 or other representative in the discussion, and some may choose to have a family member or other representative advise them on what choices to make. If you are asked to speak to the person’s family or other representative alone, and the person has capacity, then seek their permission first. If they do not want their family or other representative 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 (e.g. with power of attorney for health and welfare), 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.
DeleteIf the young person has sufficient maturity and capacity for the relevant decisions, they should be involved in the process of shared decision-making. Some parents may advise that they wish to exclude their child from these discussions. It is important to explore and understand their reasoning for such a request and to seek an appropriate approach through which to include their child in the process.
For young people, under the age of 16, a pragmatic line must be steered regarding their involvement in order to establish a position that is ethically acceptable to all those involved. For those over 16 the Mental Capacity Act applies and their involvement in the decision making should be guided accordingly.
If a young person over 16 lacks capacity their parents will normally act as their legal proxy. As such the clinical team must involve them in making shared decisions on behalf of the person. Where this is not the case, a person will be identified by social services to fulfil the legal proxy role.
DeleteNF is an 84-year-old retired nurse. She has severe visual impairment, uses a hearing aid, and has vascular dementia. She has been living in a care home for 2 years. Her daughter lives nearby and sees her at least weekly. Her son lives further away and visits every few weeks.
A community matron knows NF and her family well, and after confirming NF’s lack of capacity for decisions related to her health and future care, and recording that assessment in the health record, she has a ReSPECT conversation with the son and daughter. They tell her that their mother had given them Lasting Power of Attorney to make decisions for her.
To make decisions about NF’s care and treatment they must hold LPA for her health and welfare. If they hold LPA only for her property and financial affairs, they are not the ultimate decision-makers about her care and treatment, but must still be consulted as part of best interests decision-making.
This may become relevant if only one of them is available when a future decision is needed, so should be recorded in section 2 of the ReSPECT form. As they are both present for the ReSPECT discussion, the aim must be to seek agreement of them both on decisions about priorities of care and recommendations to be recorded.
To be valid, an LPA must have been registered with the OPG. If not, the holder does not have the intended decision-making power. Nevertheless, the holder of an unregistered LPA is best regarded as someone to be consulted as part of best interests decision-making. Sensitive explanation will be needed if (for this or some other reason) they do not have the powers that they thought that they had.
If the holder is to make decisions about potentially life-sustaining treatments, the LPA document must state specifically that they are given the power to make decisions about life-sustaining treatments. Otherwise their power is limited to making decisions about all other aspects of health and welfare, but they should still be consulted about life-sustaining treatments as part of best interests decision-making.
If NF made an ADRT, refusing a specific treatment, it is essential to know whether it was made before or after the appointment of the LPA. If it was before, it is no longer valid, and will be superseded by the attorney’s informed decision. If it was after donation of the LPA, the ADRT would apply and could not be changed by a person holding LPA.
RM is a 22-year-old student who is involved in a road accident. He is found unconscious, brought to the nearest hospital and found to have a subarachnoid haemorrhage. He is intubated and ventilated transferred to the Intensive Care Unit (ICU).
RM’s parents arrive and the ICU consultant explains that their son may need an operation to reduce the effects of the bleeding into his brain, or to prevent further bleeding. The ReSPECT process is discussed and they reach a shared decision that, there is still some possibility that he could make a good recovery, and the focus of care in an emergency should be on treatments that may help to sustain his life, including cardiopulmonary resuscitation. A ReSPECT form is completed, summarising these recommendations.
As RM is unconscious, he inevitably lacks capacity and so decisions about his treatment, including advance plans for future emergencies, must be made in his best interests.
Capacity and human rights laws require clinicians to involve people close to him, such as his family or other representatives, to be consulted as part of the decision-making process. Unless one or both of them holds power of attorney for such a decision, their role is to help clinicians to make a recommendation about CPR that is in RM’s best interests and consistent with his known views or beliefs.
RM is unconscious, so inevitably lacks capacity to make any decisions about his care and treatment. This should be noted in his health records, but a more detailed capacity assessment is not necessary or possible.
Capacity and human rights laws require clinicians to involve people close to him, such as his family or other representatives, to be consulted as part of the decision-making process. Unless one or both of them holds power of attorney for such a decision, their role is to help clinicians to make a recommendation about CPR that is in RM’s best interests and consistent with his known views or beliefs.
The ReSPECT recommendations are not legally binding; they should be used to guide immediate decision-making by health and care professionals who respond to the person in a crisis. If they are overridden, the healthcare professional should have and be prepared to justify valid reasons for overriding the recommendations.
AB is a 61-year-old lady with an advanced recurrence of pancreatic cancer. She lives with her husband, who is visually impaired; she is his full-time carer. Her oncologist discusses the option of second-line chemotherapy, but she decides that she does not want to have this. He offers referral to the palliative care team, which she accepts, and he tells her about ReSPECT. She says that she would like to discuss it with her husband and her GP and takes home an information leaflet.
She visits her GP, accompanied by her husband, and is supported through the ReSPECT process and completion of her ReSPECT form. The GP suggests that she discusses a more detailed advance care plan with the palliative care team.
Her husband’s dependence on her is a crucial piece of information to guide immediate decision-making in an emergency.
It is not appropriate to state that she refused further treatment. She was offered more chemotherapy but decided that it was not the right choice for her. That does not mean that she does not want further treatment to address her goals of care.
The use of medical jargon and abbreviations should be avoided, as some health and care workers may be unfamiliar with them, and the entries on the form should also be understandable by the person themselves.
The ReSPECT form is a summary to guide emergency decision-making, so should contain only the elements of past history or medication history that are likely to be relevant.
This example avoids medical jargon and abbreviations, making the diagnosis clearer to understand.
This summarises relevant clinical information
IA is a 65-year-old retired civil engineer from Bangladesh. He lives with his wife, who speaks little English, and two of his four children. He has a history of type 2 diabetes and reduced kidney function. Over the last twelve months his kidney function has deteriorated and he now has advanced kidney failure. He has had a previous heart attack, an episode of cellulitis in his right leg, and he is obese.
He is seen by his kidney specialist, accompanied by his wife. Dialysis is recommended, because of his advanced kidney failure, and he decides to have this treatment. The possibility of him being put on the list for a kidney transplant is also mentioned, but no firm decision is made about this.
The first step in the ReSPECT process is to develop a shared understanding of the person’s condition and prognosis. It is important that this involves exploring the person’s understanding. Asking them to explain in their own words what they have understood from any discussion or explanation can be an important way of confirming that you have achieved shared understanding.
His past history of cellulitis will be recorded in his health record, but having it on a ReSPECT form will not be of help to him, unless he is one of a few rare individuals in whom the first symptom of the onset of cellulitis is collapse from septic shock.
In contrast, agreeing and recording his preferences for care and treatment in the event of a sudden problem (such as a complication of dialysis) in which he loses capacity are a crucial part of the ReSPECT process.
Recording his wife’s communication needs will also help to guide immediate decisions if he has an emergency in which he cannot communicate.
IA is a 65-year-old retired civil engineer from Bangladesh with a history of type 2 diabetes and advanced kidney failure receiving dialysis. He lives with his wife, who speaks little English, and two of his four children.
He has a heart attack (non-ST-elevation myocardial infarction) and receives treatment in the Coronary Care Unit. An echocardiogram shows that the pumping action of his heart is severely reduced, limiting his chance of having a successful kidney transplant. The clinical team explain that he can continue with dialysis and tablets to reduce the chance of rapid worsening of his heart condition.
IA understands this, but nevertheless is content with his recent quality of life, and is clear that he wants his future care and treatment to focus primarily on sustaining life, including CPR if needed. This is agreed and recorded on his ReSPECT form.
Recording his wife’s communication needs will help to guide immediate decisions if he has an emergency in which he cannot communicate. It may be that his children can help interpret for his wife; if so that should be recorded, and their contact details included in section 8.
His country of origin and employment are unlikely to be relevant to immediate decision-making in an emergency; this summary should record only relevant information.
Whilst his heart attack and severely reduced heart pumping action are relevant, they should be recorded without use of abbreviations or medical jargon that may not be understood by the person, their family or other representatives, or by some professionals.
His dialysis needs are important to decision-making in an emergency, so should be recorded.
Learning objectives – In this module you will learn:
Remember, to save content to your cards press this symbol:
Once the ReSPECT process has been adopted in a community it can be used in the all settings – the person’s home wherever that may be, in all health and care settings, and by transport services. It is therefore important that the person keeps their ReSPECT form with them, and that it is readily available for professionals to see and use it.
DeleteWhat to do if you are caring for someone with a ReSPECT form
There are two types of situation when the ReSPECT process is key: during an emergency situation when a person with a ReSPECT form is unable to make or express choices, and in a non-emergency situation, when the ReSPECT form is reviewed and may need updating.
What to do in an emergency when a person with a ReSPECT form is unable to make or express choices:
Confirm the identity of the person with the ReSPECT form and that it is the latest version of the form completed for that person.
Read the form to understand which recommendations may relate to your role in their care.
If the recommendations apply to the current emergency, and the person cannot decide for themselves, then act on the recommendations relevant to your role when caring for that person.
What to do in a non-emergency situation as a clinician:
In non-emergency situations, the recommendations may need to be reviewed and, if necessary updated or cancelled. These situations include:
Confirm and Read
As with all ReSPECT forms, confirm the identity of the person and that it is the latest version of the form and read it to identify how the recommendations may relate to your role in their care.
Discuss
Review and discuss the goals of care and recommendations in the light of the current situation with the person and/or their family or other representatives. If the person’s current ReSPECT form requires an amendment or update, cross through the recommendations that are no longer relevant, record the updated recommendations on the same section of the form, and confirm the review by signing section 9. Refer to local policy for specific guidelines.
The form should be cancelled and a new form completed if the goals of care and recommendations have changed significantly, or if there is no space to record an update on the current form.
ReSPECT forms that are no longer valid should be clearly marked “CANCELLED”, with two diagonal lines, your legible signature (and legible name and registration number), and the date.
Once the recommendations are updated, this information should be shared with relevant health and social care staff involved in the person’s care.
In an emergency when a person with a ReSPECT form is unable to make or express choices:
In a Non-emergency situation (as a clinician):
Confirm and read the form – Review and discuss the goals of care and recommendations – if amending or updating the ReSPECT form, cross through the recommendations that are no longer relevant, record the updated recommendations on the same section of the form, and confirm the review by signing section 9.
Creating a new form – Cancel a form and complete a new form if the goals of care and recommendations have changed significantly, or if there is no space to record an update on the current form.
ReSPECT forms that are no longer valid should be clearly marked “CANCELLED”, with two diagonal lines, your legible signature (and legible name and registration number), and the date.
Once the recommendations are updated share the information with relevant health and social care staff involved in the person’s care.
DeleteAt home the ReSPECT form should be kept somewhere accessible, so that their family or other representatives know exactly where to find the ReSPECT form if an emergency occurs. In a hospital, care home, hospice or other organisation the form must be stored in a clearly defined and rapidly accessible place, whether it is in paper or electronic format.
DeleteIn the case of an emergency for which there are recommendations on the form, and the person cannot decide for themselves, follow the recommendations. If a situation arises that is not addressed on the form, or staff are unsure what to do, they should ask for help from their seniors, or members of the clinical team such as the doctors or nurses.
The form should be reviewed prior to transfer between wards and between hospitals. The clinical team should ensure appropriate handover, ensuring the receiving team are aware of the ReSPECT form and the person’s recommendations. Upon discharge, the clinical team should check the recommendations remain valid and consistent with the person’s preferences and clinical condition at the time of discharge. These details need to be passed on to the GP and or the community teams caring for the person. The form should be shown to the ambulance clinicians, or who may be providing the transport, and it should travel with the person.
If the person’s situation has changed such that acting on the recommendations would no longer be in their best interests, then care for the person by acting in their best interests, ideally guided by consensus decisions by a multidisciplinary team, and review the recommendations on the ReSPECT form.
DeleteIn the case of an emergency for which there are recommendations on the form, and the person cannot decide for themselves, follow the recommendations. If a situation arises that is not addressed on the form, or staff are unsure what to do, they should ask for help from their seniors, or members of the clinical team such as the GP or community nurses.
Ideally, the form should be reviewed upon each encounter with the person. The community teams should ensure appropriate handover so that the wider team are aware of the ReSPECT form and the person’s recommendations. If the person is moving to a hospital, care home, hospice or other organisation then the community team should check the recommendations remain valid and consistent with the person’s preferences and clinical condition at the time of transfer. The form should be shown to the ambulance clinicians, or who may be providing the transport, and it should travel with the person.
If the person’s situation has changed such that acting on the recommendations would no longer be in their best interests, then care for the person by acting in their best interests, ideally guided by consensus decisions by a multidisciplinary team, and review the recommendations on the ReSPECT form.
DeleteAll staff should be aware of the content of the ReSPECT form, where to find it, and how to get support if the person suffers an emergency for which there are recommendations on the form and the person cannot decide for themselves. If a situation arises that is not addressed on the form, or staff are unsure what to do, they should escalate the situation to the senior nurse, care home manager or the GP.
If a person is to be transferred to hospital, the form should be shown to the ambulance clinicians and should travel with the person.
DeleteAll staff should be aware of the content of the ReSPECT form, where to find it, and how to get support if the person suffers an emergency for which there are recommendations on the form and the person cannot decide for themselves. If a situation arises that is not addressed on the form, or staff are unsure what to do, they should get help from the senior nurse, hospice manager or doctors.
If a person is to be transferred to hospital or home the form should be shown to the ambulance clinicians and should travel with the person.
DeleteAdvance care planning is already well established in children’s services. Frameworks like the Child and Young Persons Advance Care Plan (CYPACP) are widely used, and where time allows, should be the primary planning process used for any child with complex or life limiting conditions. The ReSPECT process fully integrates with such plans by providing a universally recognised, concise summary, of the family’s preferences regarding treatments that might be required in an emergency. Where an advance care plan has been completed it will usually be possible to complete a ReSPECT form using the emergency preferences that have already been recorded in the plan.
The principles surrounding the ReSPECT process and completion of the form are essentially the same for babies, children and young people. The key difference is that, on most, but not all occasions, the child’s parents (or those holding parental responsibility) will be the principle decision makers. This process should only be facilitated in this context by health professionals who are fully conversant with the ethical and legal frameworks pertinent to consent in childhood.
Wherever possible the wishes of the child should be established and given due weight to influencing the recommendations that are recorded (irrespective of age). Where the patient is a young person (older child), and demonstrates competence with regard to understanding the issues at hand, their wishes must be given significant weighting. Should their wishes be in conflict with those expressed by their parents, and this cannot be resolved, it may be necessary to seek legal advice before completing any documentation.
It is important to note that the Mental Capacity Act applies to patients over the age of 16 and therefore its principles must be applied in this age group
DeleteNF is an 84-year-old retired nurse. She has severe visual impairment, uses a hearing aid, and has vascular dementia. She has been living in a care home for 2 years. Her daughter and son have Lasting Power of Attorney to make decisions for her health and welfare.
A community matron knows NF and her family well, and after confirming NF’s lack of capacity for decisions related to her health and future care, and recording that assessment in the health record, she has a ReSPECT conversation with the son and daughter. She completes a ReSPECT form with her agreed priority of care being to focus on comfort, and with agreed recommendations that she should be considered for admission to hospital for treatment of a reversible problem such as infection, but would not want to receive cardiopulmonary resuscitation or be admitted to an intensive care unit for treatments such as ventilation or renal replacement therapy.
6 weeks later, a carer finds NF lying on the floor moaning incoherently. The nurse in charge at the care home is called to help. When they attempt to move NF she screams and appears to be in pain. An out-of-hours GP attends and suspects that she has a fractured neck of femur.
She is in pain and needs prompt treatment to control this
Contacting the family would be part of good medical practice. Her son and daughter hold LPA for her health and welfare so must be consulted about her treatment, provided they are contactable and that consulting them would not delay her access to emergency treatment that she needs.
Reading the ReSPECT form will provide the GP with succinct information that may help immediate decision-making, and will draw attention to the LPA.
The recommendations that she should not receive CPR or go to ICU for organ support have no bearing on her current situation of a fractured neck of femur causing severe pain. Hospital treatment, including surgery, may be needed to relieve her pain adequately to ensure her comfort, and to restore her mobility.
The best approach would be to refer her directly to the orthopaedic team and arrange ambulance transport appropriate to the resulting admission plan, avoiding unnecessary use of 999 calls, avoiding subjecting the patient to delays and extra examination in the ED, and avoiding unnecessary work for the ED medical team.
NF is an 84-year-old retired nurse. She has severe visual impairment, uses a hearing aid, and has vascular dementia. She has been living in a care home for 2 years. Her daughter and son have Lasting Power of Attorney to make decisions for her health and welfare.
NF has a ReSPECT form with the agreed priority of care being to focus on comfort, and agreed recommendations that she should be considered for admission to hospital for treatment of a reversible problem such as infection, but would not want to receive cardiopulmonary resuscitation or be admitted to an intensive care unit for treatments such as ventilation or renal replacement therapy.
A carer finds NF lying on the floor moaning incoherently and appears to be in pain. An out-of-hours GP attends and suspects that she has a fractured neck of femur. After speaking to her daughter (her son was not contactable) the GP arranges hospital admission with the orthopaedic team for treatment of her hip fracture.
The ReSPECT form is a summary to guide decision-making in emergencies and should not be used as a substitute for other important communication. Detailed, clear handover between health and care professionals is an integral part of providing high-quality care.
It is not realistic to expect an out-of-hours GP always to be able remain with a patient in this situation as they are likely to have other urgent calls to attend. The GP should give clear guidance to the care home staff, and leave an appropriate written referral letter to accompany NF to hospital.
The ReSPECT form should travel with the patient. In this instance, the ambulance clinicians should take it and hand it to the receiving clinicians, as they cannot rely on NF to do so herself.
It is crucial that the ambulance clinicians know the main recommendations on the ReSPECT form. If she were to suffer cardiorespiratory arrest on the way to the hospital, the recommendation not to attempt CPR – decided by her daughter and son with LPA – should be respected.
NF is an 84-year-old retired nurse. She has severe visual impairment, uses a hearing aid, and has vascular dementia. She has been living in a care home for 2 years. Her daughter and son have Lasting Power of Attorney to make decisions for her health and welfare.
NF has a ReSPECT form with the agreed priority of care being to focus on comfort, and agreed recommendations that she should be considered for admission to hospital for treatment of a reversible problem such as infection, but would not want to receive cardiopulmonary resuscitation or be admitted to an intensive care unit for treatments such as ventilation or renal replacement therapy.
A carer finds NF lying on the floor moaning incoherently and appears to be in pain with a suspected fractured neck of femur. After speaking to her daughter (her son was not contactable) the GP arranges hospital admission with the orthopaedic team for treatment of her hip fracture.
NF is seen in the ED by the orthopaedic registrar, sent for x-ray and transferred to the ward. On his ward round, the consultant confirms the diagnosis of fractured neck of femur and feels that hip replacement would be the most effective way of relieving pain and restoring mobility.
The son and daughter hold LPA for her health and welfare so must be consulted about her treatment, which requires their informed consent.
The son and daughter have agreed the recommendations on her ReSPECT form, so must be involved in any review or cancellation, and must be given information to enable them to decide whether post-operative ICU care would be in her best interests.
The surgeon is recommending surgery for pain relief, in keeping with the agreed priority of care to ensure her comfort, so should not stipulate conditions for offering surgery that conflict with those priorities. CPR would not contribute to ensuring her comfort. Any decision to suspend a DNACPR recommendation in the perioperative period must be agreed with the son and/or daughter, who hold LPA to make decisions about life-sustaining treatment.
These aspects of treatment planning should be discussed with other team members and communicated clearly to all those involved in her care, so that they understand the basis for the plans and know how they should respond if NF’s condition were to deteriorate suddenly.
RM is a 22-year-old student who is involved in a road accident. He is found unconscious, brought to the nearest hospital and found to have a subarachnoid haemorrhage. He is intubated and ventilated transferred to the Intensive Care Unit (ICU).
The ICU consultant explains to RM’s parents that their son may need an operation to reduce the effects of the bleeding into his brain, or to prevent further bleeding. The ReSPECT process is discussed and they reach a shared decision that, there is still some possibility that he could make a good recovery, and the focus of care in an emergency should be on treatments that may help to sustain his life, including cardiopulmonary resuscitation. A ReSPECT form is completed, summarising these recommendations.
RM is transferred to the neurological centre and a CT angiography shows an aneurysm as the cause of the bleeding requiring an operation to clip the aneurysm to reduce the risk of further bleeding. The neurosurgeon explains this to RM’s parents and they discuss the ReSPECT form and agree that the entries are still correct.
The aneurysm clipped is as planned. After a few days, the sedation is reduced and RM is weaned from the ventilator, is able to breathe for himself, and he starts to speak. He is well enough to be transferred to the neurosurgical ward.
Although his risk of death or cardiac arrest is lower than it was, he is still at some risk of a sudden event, such as a seizure, so a plan for his emergency care is still important.
RM has regained consciousness and (unless suspected otherwise) has capacity to make his own choices. It will be good to keep his parents informed, but only with his agreement.
Since RM has regained consciousness and (unless suspected otherwise) has capacity to make his own choices, he should be offered the chance to have (or to decline) a new ReSPECT form, based on his own preferences rather than on decisions made in his best interests when he lacked capacity.
Again, since RM has regained consciousness and (unless suspected otherwise) has capacity to make his own choices, he should be offered the chance to have (or to decline) a new ReSPECT form, based on his own preferences rather than on decisions made in his best interests when he lacked capacity.
AB is a 61-year-old lady with an advanced recurrence of pancreatic cancer. She has decided that she does not want second-line chemotherapy. She has read about the ReSPECT process and has come to see her GP. Following the ReSPECT conversation, AB and her GP agree that her priority for care and the recommendations are summarised in section 4 of her ReSPECT form. She is given the form to take home.
The ReSPECT form should be immediately accessible if she is taken ill suddenly and cannot express her wishes for immediate care and treatment.
Some localities have a ‘message in a bottle’ system, leaving a note in the refrigerator that directs emergency clinicians to the location of the form.
It should be kept handy, not filed away or given to a solicitor or other third party.
Her family and friends should know where to find it if she is taken ill.
It should be kept handy, not filed away or given to a solicitor or other third party.
She should take it with her if she goes out shopping – or goes out for any other purpose.
These are your saved cards
You haven’t saved any cards yet
Just tap the ‘Save to My Cards’ button anywhere on the app to have quick access to bits of information
The teaching modules will explain the ReSPECT process, who it’s for, how to fill in a ReSPECT form, how to prepare for a conversation and how to care for someone with a form.
Each module contains essential information and further reading if you would like to find out more. Essential information can be read, watched and listened to depending on your preference.
There are tools designed to help you prepare and de-brief before and after real life ReSPECT conversations, as well as example scenarios with questions which enable you to apply your learning to hypothetical situations
This Educational web Application is maintained by the Resuscitation Council (UK), referred to below as the “Council”. The Council is a registered charity, number 286360 and its office is at 5th Floor Tavistock House North, Tavistock Square, London WC1H 9HR By accessing this Website, you agree to be bound by these terms of use.
This information allows the Council to
1.2. The personal details available on this training website are strictly confidential. Course centre personnel agree to use the data obtained from this website in a fair and lawful manner solely for training and administrative purposes related to the Council. Course centre personnel agree not to sell individual information and not to share the information with any other organisation or individual unless the Council has given them prior written consent to do so.
1.3. Because the internet structure is global, and it is not possible to predict the routes that information is sent over the internet will take, the information you provide may be transferred temporarily via a route which takes it outside the European Economic Area as it passes between you and the Council. By submitting your information you consent to this transfer.
1.4. This Web Application requires users to have cookies enabled. This is to manage session information while the user is logged in. These are temporary cookies rather than permanent ones, which mean that no critical or sensitive information is stored.
Use of cookies
We use Google Analytics software to collect information about how you use respectprocess.org.uk/learning. We do this to help make sure the site is meeting the needs of its users and to help us make improvements.
The videos on this website are hosted on Vimeo.com, you can find out more about Vimeo cookie policy here.
Google Analytics stores information about:
We don’t collect or store your personal information (eg your name or address) so this information can’t be used to identify who you are.
We don’t allow Google to use or share our analytics data.
Google Analytics sets the following cookies:
Universal Analytics
Name | Purpose | Expires |
_ga | This helps us count how many people visit respectprocess.org.uk by tracking if you’ve visited before | 2 years |
_gat | Used to manage the rate at which page view requests are made | 10 minutes |
Google Analytics
Name | Purpose | Expires |
_utma | Like _ga, this lets us know if you’ve visited before, so we can count how many of our visitors are new to respectprocess.org.uk or to a certain page | 2 years |
_utmb | This works with _utmc to calculate the average length of time you spend on respectprocess.org.uk | 30 minutes |
_utmc | This works with _utmb to calculate when you close your browser | when you close your browser |
_utmz | This tells us how you reached respectprocess.org.uk (eg from another website or a search engine) | 6 months |
You can opt out of Google Analytics cookies.
2.1. The Council makes no warranty whatsoever, including, without limitation, that the operation of the website will be uninterrupted or error-free; that defects will be corrected, that this website, including the server that makes it available, is free of viruses, worms, trojan horses or other destructive items.
2.2. The Council expressly disclaims any representations or warranties of any kind, express or implied, including without limitation warranties of merchantability, fitness for any particular purpose, non-infringement, or as to the operation of this website or the content. The Council does not warrant or make any representations as to the security of this website. The Council does not warrant that the website or the servers which make this website available or electronic communications sent by the Council are free from viruses or any other harmful element.”
3.1. In no event shall the Council be liable for any direct, special, incidental, indirect or consequential damages of any kind arising out of or in connection with the use of this website or any information contained in it. The Council shall not be liable under any circumstances for any personal injury, loss or damages that may arise from the use of information contained in this website however these might be caused. Anyone following the advice on this website does so entirely at their own risk.
4.1. Links on this website give access to external websites that are not under the control of the Council. These external websites are not endorsed by the Council and the Council makes no warranties representations or undertakings nor accepts any liability or responsibility in connection with the content or use made of any website linked to this website.
5.1. By using this website you agree to indemnify the Council and to keep the Council indemnified from and against any costs, claims, demands, expenses and liabilities suffered or incurred by the Council arising from or which is directly or indirectly related to your access to and/or use of the website and/or any other person’s use of the website where such person was able to access the website using your password.
6.1. The Council reserves the right to vary these terms of use from time to time. Such changes will be posted on the homepage of the training website. Your continued use of the website following the posting of any changes will mean you have accepted the changes.
7.1. All design, text and graphics displayed on this Website and the selection and arrangement thereof are copyright of the Council. In other cases material appears on the website with the specific consent of the relevant copyright owner. None of the contents of this website may be copied or incorporated into any other website or other work of any kind, in any form whatsoever.
8.1. All trademarks, product names, brand names, company names, titles, copyrights or logos cited herein are the trademarks, trade names or copyrights of their respective owners. No permission is given by the Council in respect of the use of any such trademarks, product names, brand names, company names, titles, copyrights or logos
Use the form below to send an email. We will try to get back to you as soon as possible.
A person on a ventilator in an ICU is already receiving life-sustaining respiratory support. Whilst there are many possible reasons for needing such treatment, anyone receiving such intensive care is likely to be at risk of complications, and may have specific treatment needs in the event of a sudden change in their condition.
The ReSPECT process has the potential to help anyone receiving life support or other intensive treatment by recording a summary plan for their care and treatment in the event of a sudden complication or further deterioration in their condition, ensuring that immediate treatment decisions in such a crisis are person-centred. Being on a ventilator doesn’t necessarily mean that a person cannot communicate and does not have the capacity to participate in the ReSPECT process. Each person must be assessed as an individual, and involved in planning their care if that is possible. If they lack capacity to be involved, their family or other representatives must be involved in the ReSPECT process to determine and record recommendations about realistic care and treatment that are in the person’s best interests.
If a person has had a DNACPR form in place for 3 years, some anticipatory planning has already taken place, but the degree of involvement of the person in that planning may not be certain. As ReSPECT allows advance recommendations about CPR to be considered in the context of a broader plan for care and treatment in a future emergency, it would be appropriate to offer the ReSPECT process to this person and review the recommendation about CPR with them as part of the process. It will be important to follow the ReSPECT process systematically, and to avoid starting by discussing the DNACPR recommendation.
The ReSPECT process offers this person an opportunity to have a more complete plan for their care and treatment in a future emergency than a DNACPR form, and to remove or avoid some of the negative connotations that a DNACPR recommendation may carry. Completion of the ReSPECT process and form will make the previous DNACPR form redundant.
A person admitted to hospital following AMI is likely to be considered for invasive investigation and treatment, and is at increased risk of serious complications of their condition or its treatment, including sudden cardiac arrest, stroke and severe bleeding. In that setting, making a plan for their care and treatment in the event of any such emergency is part of good-quality care. Many people in that setting will want to be considered for all potentially life-sustaining treatments should they become relevant, but some may choose not to receive specific treatments. For example, for various reasons, some may not want CPR or some may not want blood transfusion.
The ReSPECT process can help a person admitted to hospital following AMI by making sure that they understand their condition and its treatment, recording their priorities of care, and recording clear, agreed recommendations for their care and treatment in the event of a sudden complication of their AMI or its treatment. It can help to ensure that a person’s emergency treatment is based on their wishes, beliefs and preferences, and not on assumptions by clinicians faced with an emergency for which there has been no advance planning.
Depression is a disturbance of the mind causing a persistently low mood. It can vary in severity and duration and, in some people, may lead to negative thoughts that they would not have at other times, e.g. after recovery from a depressive illness.
At its most severe, depression can be life-threatening because it can make a person feel suicidal or lacking the will to live. Some people with depression may lack mental capacity for certain decisions.
Depression is not a condition that should prompt consideration of the ReSPECT process. Great care would be needed to assess whether a person with depression has the capacity to understand and make the same shared decisions about their care and treatment in a future emergency that they would make after treatment of and recovery from an episode of depression. If a person has just been diagnosed with depression, this is unlikely to be a good time to discuss the ReSPECT process with them, unless they have some other health condition to warrant urgent advance care planning of this nature.
Pneumonia is a serious, acute lung infection.
People who are elderly, who have chronic illnesses, or who are immunocompromised are at a higher risk of suffering pneumonia or coming to harm from it.
The ReSPECT process can help someone with acute pneumonia. If they are elderly, have a chronic condition or are immunocompromised, it would have been better to have offered them the opportunity to go through the ReSPECT process and make a plan before they developed the acute infection. However, now that they have an acute illness there is still an opportunity to make shared decisions and to plan for their care and treatment in the event of a sudden serious complication in which they are unable to make decisions. After making sure that they understand their condition, its treatment and likely outcomes, the process records their priorities for their care and clear recommendations for their treatment in an emergency. As they have an acute illness that could improve or deteriorate rapidly, it is important to consider frequently whether those recommendations are still appropriate, and to review the content of their ReSPECT form if there is any substantial change in their condition, whether that is improvement or deterioration.
Long QT syndromes are a group of relatively rare, usually inherited heart conditions that cause problems with the electrical activity of the heart.
Many people with a long QT syndrome are at increased risk of sudden cardiac arrest. For many, that risk can be reduced with regular oral treatment. However, in a person with a long QT syndrome some commonly used anti-arrhythmic drugs must be avoided, as they will increase the risk of further dangerous heart rhythms.
The ReSPECT process can help someone with long QT syndrome by making sure that they understand their condition and its treatment, recording their diagnosis, their treatment goals, and clear, agreed recommendations for their care and treatment in a future emergency, including the actions that should follow an episode of ventricular arrhythmia, and treatments that must be avoided (e.g. amiodarone).
All major operations carry a risk of serious complications, including death.
After some operations there will be planned admission to an intensive care unit for monitoring and ongoing treatment.
The ReSPECT process can help someone referred for major elective surgery by making sure that they understand their condition and its treatment and involving them in advance planning for their realistic care and treatment in the event of a complication. The precise recommendations that will be discussed and agreed with any individual will vary according to the nature and purpose of their surgery, the nature and prognosis of any underlying health problems, their perception of their quality of life and – of course – their own personal priorities for their care. Therefore, recording prior to the operation agreed recommendations for care and treatment in a future emergency is invaluable.
A learning disability is a reduced intellectual ability and difficulty with everyday activities (e.g. household tasks, socialising or managing money), which affects someone for their whole life. Individuals may be affected differently, with some having mild disability to others having severe or profound disability.
Some people’s limited ability to understand complicated information may affect their mental capacity to make decisions. When a person with a learning disability suffers an acute illness or injury, they may not be able to make informed decisions about their emergency treatment or communicate the things that are important to them.
The ReSPECT process can help someone with a learning disability by recording the nature and degree of their disability, their priorities of care, and clear, agreed recommendations for their realistic care and treatment in a future emergency. Where the person with a learning disability lacks the capacity to participate in the ReSPECT process, the plan should be made in their best interests in consultation with those who know them well.
Rheumatoid arthritis is a chronic progressive disease in which inflammation in the joints causes pain, deformity and disability.
The severity of symptoms and disability varies greatly among individuals, at different stages of the disease, and in response to treatment. Some people with rheumatoid disease are susceptible to acute episodes of joint inflammation, and in some their treatment may make them susceptible to acute, potentially life-threatening infection.
The ReSPECT process can help someone with rheumatoid arthritis by making sure that they understand their condition and its treatment, recording their diagnosis, important disabilities and key information about their treatment, their priorities of care, and clear, agreed recommendations for their realistic care and treatment in a future emergency. People must be given the opportunity to identify what is important to them and what realistic treatments they would or would not wish to be considered for in a future emergency. Their choices will be influenced by their quality of life and prospects for future improvement or deterioration. Their priorities and the agreed recommendations may change as their condition progresses, so it will be important to review these with them as this happens.
When someone close to them is terminally ill or has a serious illness, people often think about the types of care and treatment that they would or would not want to be considered for if they became seriously ill themselves. Caring for those close to a terminally ill person is an integral part of good end-of-life care. Whilst discussing ReSPECT routinely with all those close to a dying person would be insensitive, if someone asked questions about or expressed an interest in making an advance plan for their own care, they should be offered information about ReSPECT and other types of advance planning
The ReSPECT process can help such people by enabling them to understand their own current state of health, to record their priorities for their care, and to record clear recommendations for their care and treatment in a future emergency. Remember that ReSPECT is a summary to guide decision-making only in a future emergency, so if people want to make a broader advance care plan, or a legally binding refusal of specific treatment (ADRT) they should be supported in doing that as well.
Metastatic cancer includes a wide range of cancer types with varying degrees of prognosis.
Generally, people with metastatic cancer have a poor prognosis; however, people with some types of metastatic cancer can live for many years.
The ReSPECT process can help someone with advanced or metastatic cancer by making sure that they understand their condition and its treatment, recording their diagnosis, their priorities of care, and clear, agreed recommendations for their realistic care and treatment in a future emergency. If a ReSPECT form is completed with someone whose metastatic cancer is not causing them troublesome symptoms or disability, or is not yet at an advanced stage, their priorities and the agreed recommendations may change as their condition progresses, so it will be important to review these with them as this happens.
An Advance Decision to Refuse Treatment (ADRT) is a legally binding document (in England & Wales) in which an adult refuses one or more specific treatments.
To be valid, an ADRT refusing life-sustaining treatment must state that it is refused even if the person’s life is at risk. ADRTs can be recorded in varying formats, with which health and care professionals may not be familiar.
The ReSPECT process and form work well alongside other planning documents such as an ADRT. The ReSPECT form has a standard format intended to make it easy to find relevant detail quickly in an emergency. If a person has made an ADRT, the ReSPECT form should draw attention to this in section 2. The ReSPECT form allows this to be considered in the context of the person’s broad goals of treatment, together with other agreed recommendations about their realistic care and treatment in a future emergency. If the ADRT is refusing life-sustaining treatment, the ReSPECT form must recommend that CPR is not attempted.
Anaphylaxis is a serious, life-threatening allergic reaction (e.g. to nuts, eggs, bee stings or a drug). Some episodes are rapid in onset and cause collapse, hypotension and confusion or impaired consciousness. Treatment of an anaphylactic reaction includes immediate injection of adrenaline.
Many susceptible individuals carry a pre-filled syringe containing adrenaline for emergency use. Treated promptly and correctly, many people with anaphylaxis will make a full recovery.
The ReSPECT process can help someone susceptible to anaphylaxis by making sure that they understand their condition and its treatment, recording their risk of anaphylaxis (and the trigger if known), and a clear recommendation regarding treatment of an episode (i.e. adrenaline and fluids). For most susceptible people, emergency care and treatment will focus on life-sustaining treatment, unless they have specific wishes or some other condition leading to a different recommendation.
Heart failure is a chronic condition in which the heart’s pumping efficiency is reduced.
People with heart failure vary greatly in the severity of their symptoms and in the resulting disability. Whilst treatment can be very effective in controlling symptoms and prolonging life, for many there will come a time when their symptoms are not well controlled, when they become increasingly disabled by fatigue and breathlessness, and when their goal of treatment will focus on maintaining comfort rather than prolonging life. Furthermore, most people with heart failure have an increased risk of a sudden deterioration, including a risk of sudden cardiac arrest.
The ReSPECT process can help someone with heart failure by making sure that they understand their condition and its treatment, recording their diagnosis, their priorities of care, and agreed recommendations for their realistic care and treatment. For those who engage with the ReSPECT process at an early stage, it will be important to review their plan as their condition progresses, enabling them to reconsider their priorities for their care, and the recommendations for treatment to remain relevant and realistic. For those with an implantable cardioverter defibrillator and advanced heart failure, discussions should include consideration of deactivation of their device as they are coming towards the end of their lives, to protect them from the distress of multiple shocks as they are dying.
People can experience a sudden unforeseen health crisis at any time in their lives, due to either a sudden illness or a severe injury.
Some people prefer to plan for the unexpected, whereas others prefer to take a reactive approach. The ReSPECT process can help someone who wants to plan ahead to have a clear record of their priorities of care and agreed recommendations for their care and treatment in a future emergency in which they are unable to make decisions.
Dementia is a disorder of the brain that causes decline in cognitive function, such as impairment of memory, thinking, problem-solving or communication.
People with dementia may lose the ability to make decisions. In advanced dementia, people may need help with their activities of daily living.
The ReSPECT process can help someone with dementia by making sure that they (or those close to them if they lack capacity) understand their condition and its treatment, recording their diagnosis and their priorities of care, together with clear, agreed recommendations for their realistic care and treatment in an emergency. Ideally, the ReSPECT process should be introduced early so that they can contribute to conversations and decisions about their treatment recommendations. Those with more advanced dementia may lack the mental capacity to contribute to any discussions, in which case their family or other representatives must be involved in planning for their care and treatment in a future emergency.
The ReSPECT process involves shared decision-making, unless this is impossible. If a person doesn’t want to be involved in advance planning, or doesn’t want a ReSPECT form, their wishes should be respected, and attempts should not be made to coerce them into discussing ReSPECT.
Whilst a person may not want to be involved in advance planning of their future care and treatment, some people will want this to be done for them by their healthcare team, or by their healthcare team in consultation with their family or others close to them. If a person declines information about and discussion of ReSPECT, explore whether they would like their family and other representatives to be involved in planning their treatment, and whether they want their healthcare team to make a plan for their treatment in a future emergency. Remember always to make clear that a person may change their mind and discuss ReSPECT at any time, even if they were not ready or willing to do so initially
Epilepsy is a chronic disorder of the brain that causes sudden and recurrent seizures.
Some people experience seizures only rarely; others have frequent seizures that may be difficult to prevent or to treat. The type and dose of anticonvulsant treatment taken to prevent seizures can vary from one person to another, as can the treatment that is most effective in treating a prolonged seizure.
The ReSPECT process can help someone with epilepsy by making sure that they understand their condition and its treatment, recording their diagnosis, a focus on life-sustaining treatments and clear recommendations for their individual treatment needs should they experience a prolonged seizure.
In Addison’s disease (primary adrenal insufficiency) the adrenal glands do not produce enough steroid hormones.
A person with Addison’s disease must take regular steroid replacement tablets and an illness such as an infection can cause rapid deterioration leading to collapse, vomiting, severe hypotension and confusion. In this life-threatening emergency, they must be given steroid injections and intravenous fluids without delay. Addison’s disease is treatable and people with it are generally expected to recover following prompt treatment of such an acute episode (‘Addisonian crisis’).
The ReSPECT process can help someone with Addison’s disease, by making sure that they understand their condition and its treatment, recording their diagnosis, a focus on life-sustaining treatments and clear recommendations for their treatment in an acute episode.
TM is 76 years old. Her husband died 7 years ago, having been severely disabled by a stroke for his last 2 years of life. She has decided that, although she still enjoys life, lives independently and would like to have treatment for reversible conditions, she would not want to receive life-sustaining treatments, including CPR, ventilation or renal dialysis. She has explained her decision to her daughter who is supportive. TM visits her GP to ask how she can make sure that her wishes are known.
Whilst a DNACPR form may help to ensure that she does not receive CPR against her wishes, it will not address her wish to avoid ventilation or renal dialysis. A ReSPECT form offers the opportunity to record not only those treatments that she doesn’t want, but also those that she would want to be considered for.
It is important also that she is offered information about how to make a legally binding refusal of specific treatments (Advance decision to refuse treatment – ADRT – in England and Wales) and the practical ways of ensuring that her refusal is acted on (e.g. by having a ReSPECT form that draws attention to the ADRT).
If she has seen a doctor at the first visit, it may be appropriate for the conversation and form to be completed at that visit. However, some people may want more information, and time to consider before having a ReSPECT form completed, so initial explanation and provision of an information leaflet, followed by a further discussion will be correct person-centred care for them.
If an advance nurse practitioner is skilled in having sensitive conversations about the ReSPECT process, that nurse practitioner could have the conversation with TM and complete a ReSPECT form, before having it countersigned by the GP as the senior responsible clinician. If not, the nurse practitioner should be able to provide TM with some initial information about ReSPECT and to come back for a discussion with the GP.
TM has thought this through and discussed it with her daughter, so has come for help in ensuring that her wishes are respected. Her daughter does not need to be present for this discussion.
Her GP completes a ReSPECT form with her, based on their conversation and shared decision-making about its content.
Knowing that her daughter is aware of her wishes may help those faced with contacting the daughter about TM in an emergency.
Not being a burden to anyone is a common reason for people not wanting some potentially life-sustaining interventions, especially as they get into older age, so if this was what she stated as something important to her it should be recorded.
TM has not refused all life-sustaining treatment, so the focus should still be on sustaining life rather than on comfort, ensuring that she has active treatment for reversible illnesses such as an infection, but recording also her wish not to receive ventilation, dialysis or CPR.
TM has not refused all life-sustaining treatment, so the focus should still be on sustaining life rather than on comfort, ensuring that she has active treatment for reversible illnesses such as an infection, but recording also her wish not to receive ventilation, dialysis or CPR.
TM has not refused all life-sustaining treatment, so the focus should still be on sustaining life rather than on comfort, ensuring that she has active treatment for reversible illnesses such as an infection, but recording also her wish not to receive ventilation, dialysis or CPR.
As these recommendations have been agreed with her when she has capacity, statement A should be selected in section 6.
A few weeks later TM sees her GP as she has been experiencing blackouts and feeling dizzy. She is referred to a cardiologist. Investigations show that she has sinus node disease, and the cardiologist offers her pacemaker implantation. He explains that this is a minor procedure, carried out under local anaesthesia, and its purpose is to prevent further blackouts and dizziness that could result in injury or hospital admissions. She tells the cardiologist that she has already decided that she would not want ventilation, dialysis or CPR and shows him her ReSPECT form.
Pacemaker implantation is an effective treatment for symptoms from sinus node disease. Cardiac arrest is a rare but recognised risk during pacemaker implantation, but is almost always rapidly treatable with a low risk of the person being harmed. In this instance, explaining that to TM and giving her a chance to temporarily reverse the recommendation about CPR is an essential part of obtaining informed consent to pacemaker implantation.
There is no justifiable reason to ignore recommendations that have been discussed and agreed between a person and their health professional. They must be considered and reviewed in every situation when a person’s condition changes.
As her daughter has supported her in making the plan on her ReSPECT form it is important that she has the chance to discuss the new situation with her daughter.
If she decided that she still wished to refuse CPR, she has a right to do that, even if her healthcare professionals consider it unwise or illogical and do not recommend this. If her cardiologist feels unable to go ahead with pacemaker implantation unless he or she can attempt resuscitation from cardiac arrest, he or she should arrange a review by another cardiologist who is willing to respect her wishes.
TM decides that she wants to have a pacemaker implanted and that she would like the recommendation about CPR, but not the recommendations about ventilation and dialysis, suspended during her day-case admission for this procedure.
Leaving her ReSPECT form at home, or creating a new one without cancelling the existing one, risks her having 2 different versions, so she should bring it with her.
As there is a radical change to the recommendation about CPR, the existing form should be cancelled and a new one created, stating that CPR attempts are recommended but that she would not want ventilation or dialysis.
As there is a radical change to the recommendation about CPR, the existing form should be cancelled and a new one created, stating that CPR attempts are recommended but that she would not want ventilation or dialysis.
Making alterations to a form by crossing out and reversing important recommendations could create confusion and a risk that the form will be misinterpreted or disregarded as invalid.
The pacemaker is implanted successfully and her pacemaker check is satisfactory. The cardiology registrar reviews her ReSPECT form with her and, with her agreement, cancels it and creates a new one that once again records her wish not to receive CPR, ventilation or dialysis, but to receive other treatments for reversible illnesses. She goes home with this form in late afternoon.
Shortly before midnight, she is brought to the Emergency Department (ED) by ambulance because of increasing left-sided chest pain and breathlessness. Clinical examination and chest X-ray show evidence of a left tension pneumothorax. The ED registrar wants to insert a chest drain. He is shown her ReSPECT form.
Whilst it is important that he is aware of the recommendations on her ReSPECT form, there is nothing to suggest that Mrs TM has lost capacity, so the ED registrar should seek her informed consent to any new intervention.
Consent to a procedure does not automatically imply consent to treatment of a complication. The ReSPECT form does not provide consent or authorisation for any future treatment, but can guide immediate decision-making if the person has lost capacity to make relevant decisions.
Chest drain insertion is not CPR and is treatment for a potentially reversible condition so, if she had lost capacity when she arrived in the ED, the recommendations on her form would have allowed the ED registrar to decide to insert a chest drain.
Chest drain insertion is not CPR and is treatment for a potentially reversible condition so, if she had lost capacity when she arrived in the ED, the recommendations on her form would have allowed the ED registrar to decide to insert a chest drain.
NF is an 84-year-old retired nurse. She has severe visual impairment, uses a hearing aid, and has vascular dementia. She has been living in a care home for 2 years. She relates well to the carers, and enjoys her meals and her daughter’s visits. Her daughter lives nearby and sees her at least weekly. Her son lives further away and visits every few weeks.
A community matron knows NF and her family well, and after confirming NF’s lack of capacity for decisions related to her health and future care, and recording that assessment in the health record, she has a ReSPECT conversation with the son and daughter. They tell her that their mother had given them Lasting Power of Attorney to make decisions for her.
To make decisions about NF’s care and treatment they must hold LPA for her health and welfare. If they hold LPA only for her property and financial affairs, they are not the ultimate decision-makers about her care and treatment, but must still be consulted as part of best interests decision-making.
This may become relevant if only one of them is available when a future decision is needed, so should be recorded in section 2 of the ReSPECT form. As they are both present for the ReSPECT discussion, the aim must be to seek agreement of them both on decisions about priorities of care and recommendations to be recorded.
To be valid, an LPA must have been registered with the OPG. If not, the holder does not have the intended decision-making power. Nevertheless, the holder of an unregistered LPA is best regarded as someone to be consulted as part of best interests decision-making. Sensitive explanation will be needed if (for this or some other reason) they do not have the powers that they thought that they had.
If the holder is to make decisions about potentially life-sustaining treatments, the LPA document must state specifically that they are given the power to make decisions about life-sustaining treatments. Otherwise their power is limited to making decisions about all other aspects of health and welfare, but they should still be consulted about life-sustaining treatments as part of best interests decision-making.
If NF made an ADRT, refusing a specific treatment, it is essential to know whether it was made before or after the appointment of the LPA. If it was before, it is no longer valid, and will be superseded by the attorney’s informed decision. If it was after donation of the LPA, the ADRT would apply and could not be changed by a person holding LPA.
After clarifying this, the matron goes through the ReSPECT process with them, and completes a ReSPECT form with her agreed priority of care being to focus on comfort, and with agreed recommendations that she should be considered for admission to hospital for treatment of a reversible problem such as infection, but would not want to receive cardiopulmonary resuscitation or be admitted to an intensive care unit for treatments such as ventilation or renal replacement therapy.
6 weeks later, a carer finds NF lying on the floor moaning incoherently. The nurse in charge at the care home is called to help. When they attempt to move NF she screams and appears to be in pain. An out-of-hours GP attends and suspects that she has a fractured neck of femur.
She is in pain and needs prompt treatment to control this
Contacting the family would be part of good medical practice. Her son and daughter hold LPA for her health and welfare so must be consulted about her treatment, provided they are contactable and that consulting them would not delay her access to emergency treatment that she needs.
Reading the ReSPECT form will provide the GP with succinct information that may help immediate decision-making, and will draw attention to the LPA.
The recommendations that she should not receive CPR or go to ICU for organ support have no bearing on her current situation of a fractured neck of femur causing severe pain. Hospital treatment, including surgery, may be needed to relieve her pain adequately to ensure her comfort, and to restore her mobility.
The best approach would be to refer her directly to the orthopaedic team and arrange ambulance transport appropriate to the resulting admission plan, avoiding unnecessary use of 999 calls, avoiding subjecting the patient to delays and extra examination in the ED, and avoiding unnecessary work for the ED medical team.
After speaking to her daughter (her son was not contactable) the GP arranges hospital admission with the orthopaedic team for treatment of her hip fracture.
The ReSPECT form is a summary to guide decision-making in emergencies and should not be used as a substitute for other important communication. Detailed, clear handover between health and care professionals is an integral part of providing high-quality care.
It is not realistic to expect an out-of-hours GP always to be able remain with a patient in this situation as they are likely to have other urgent calls to attend. The GP should give clear guidance to the care home staff, and leave an appropriate written referral letter to accompany NF to hospital.
The ReSPECT form should travel with the patient. In this instance, the ambulance clinicians should take it and hand it to the receiving clinicians, as they cannot rely on NF to do so herself.
It is crucial that the ambulance clinicians know the main recommendations on the ReSPECT form. If she were to suffer cardiorespiratory arrest on the way to the hospital, the recommendation not to attempt CPR – decided by her daughter and son with LPA – should be respected.
NF is seen in the ED by the orthopaedic registrar, sent for x-ray and transferred to the ward. On his ward round, the consultant confirms the diagnosis of fractured neck of femur and feels that hip replacement would be the most effective way of relieving pain and restoring mobility.
The son and daughter hold LPA for her health and welfare so must be consulted about her treatment, which requires their informed consent.
The son and daughter have agreed the recommendations on her ReSPECT form, so must be involved in any review or cancellation, and must be given information to enable them to decide whether post-operative ICU care would be in her best interests.
The surgeon is recommending surgery for pain relief, in keeping with the agreed priority of care to ensure her comfort, so should not stipulate conditions for offering surgery that conflict with those priorities. CPR would not contribute to ensuring her comfort. Any decision to suspend a DNACPR recommendation in the perioperative period must be agreed with the son and/or daughter, who hold LPA to make decisions about life-sustaining treatment.
These aspects of treatment planning should be discussed with other team members and communicated clearly to all those involved in her care, so that they understand the basis for the plans and know how they should respond if NF’s condition were to deteriorate suddenly.
IA is a 65-year-old retired civil engineer from Bangladesh. He lives with his wife, who speaks little English, and two of his four children. He has a history of type 2 diabetes and reduced kidney function. Over the last twelve months his kidney function has deteriorated and he now has advanced kidney failure. He has had a previous heart attack, an episode of cellulitis in his right leg, and he is obese.
He is seen by his kidney specialist, accompanied by his wife. Dialysis is recommended, because of his advanced kidney failure, and he decides to have this treatment. The possibility of him being put on the list for a kidney transplant is also mentioned, but no firm decision is made about this.
The first step in the ReSPECT process is to develop a shared understanding of the person’s condition and prognosis. It is important that this involves exploring the person’s understanding. Asking them to explain in their own words what they have understood from any discussion or explanation can be an important way of confirming that you have achieved shared understanding.
His past history of cellulitis will be recorded in his health record, but having it on a ReSPECT form will not be of help to him, unless he is one of a few rare individuals in whom the first symptom of the onset of cellulitis is collapse from septic shock.
In contrast, agreeing and recording his preferences for care and treatment in the event of a sudden problem (such as a complication of dialysis) in which he loses capacity are a crucial part of the ReSPECT process.
Recording his wife’s communication needs will also help to guide immediate decisions if he has an emergency in which he cannot communicate.
A dialysis nurse specialist tells Mr IA about ReSPECT and offers him an information leaflet, but he says that he does not want a leaflet or to discuss ReSPECT and have a form at present.
People may have different reasons for declining discussion or information about any aspect of their health. These include cultural and religious attitudes and beliefs.
Another reason for declining may be limitations in their ability to understand health information, or to read or understand information in the format offered. Use of different formats, including easy read formats, translations into other languages and videos may help to overcome some of these difficulties.
If they do not want a discussion or further information at this time, their wish must be respected and it would not be appropriate to complete a ReSPECT form without their involvement.
A note should be made in their health record that ReSPECT has been offered, and that they are not ready to discuss it yet, but they should be assured that discussion will be offered if they decide later that they would like that.
As with the previous question, a note should be made in their health record that ReSPECT has been offered, and that they are not ready to discuss it yet, but they should be assured that discussion will be offered if they decide later that they would like that.
IA starts regular dialysis and tolerates this well.
Six months later he has bad chest pain and is taken to the Emergency Department. After various tests, he is told that he has had a heart attack (non-ST-elevation myocardial infarction). He receives treatment in the Coronary Care Unit and an echocardiogram shows that the pumping action of his heart is severely reduced.
The cardiology registrar suggests that he reconsiders having a ReSPECT form, so that the nurses and other team members would know what to do if he had a sudden further problem with his heart and could not make decisions at the time. He decides that he would now like this.
Having obtained his agreement to discussing ReSPECT, the cardiology registrar may be best placed to continue the conversation. Having another health professional present as well, such as a member of the kidney team, can sometimes help explain things to people in ways that they understand and provide expert knowledge about both his heart and kidney conditions.
Alternatively, IA may feel that his dialysis nurse knows him and his family better than the registrar. Whoever has the conversation with him must have the necessary skills and knowledge to explain things clearly and answer his questions.
Alternatively, IA may feel that one of the coronary care nurses knows him and his family better than the registrar. Whoever has the conversation with him must have the necessary skills and knowledge to explain things clearly and answer his questions.
Whoever has the conversation with him must have the necessary skills and knowledge to explain things clearly and answer his questions.
Realistically, it is unlikely that a GP will be able to come to the hospital to have the ReSPECT conversation.
In this situation, the purpose of ReSPECT is not to discuss palliative care but to reach shared agreement and record recommendations on what care and treatment may help him to achieve his goals of care, and what types of care or treatments he would not want or would not work for him.
People should be assumed to have capacity unless there is reason to suspect a disturbance of their mind, so a formal capacity assessment is not needed unless such a disturbance is suspected.
Ideally, all sensitive and important conversations should take place in a setting where people can be comfortable, and where distractions are kept to a minimum, which may be around the bed. Finding a separate room is not always possible.
Ensuring that the chance of interruption (e.g. by telephones or bleeps) is kept to a minimum should be achievable.
Delaying a ReSPECT conversation to a time when all other family members can be present may leave a person without an agreed emergency plan for a substantial time. Some individuals will insist that certain of their family or friends must be there; however, the participants in and timing of the conversation should be dictated by what is right for each individual.
Whoever has the ReSPECT conversation with IA must have a clear understanding of his condition and its treatment and prognosis. Ideally this should be informed by discussions among the multidisciplinary healthcare team.
Liaison between cardiology and renal teams will be especially important. For example, the new finding of severe left ventricular impairment may increase the risk and reduce the potential benefit of transplant surgery, so it will be important that this is considered and explained clearly to IA before he will be able to contribute to shared decision-making on a plan for a future emergency.
Recording his wife’s communication needs will help to guide immediate decisions if he has an emergency in which he cannot communicate. It may be that his children can help interpret for his wife; if so that should be recorded, and their contact details included in section 8.
His country of origin and employment are unlikely to be relevant to immediate decision-making in an emergency; this summary should record only relevant information.
Whilst his heart attack and severely reduced heart pumping action are relevant, they should be recorded without use of abbreviations or medical jargon that may not be understood by the person, their family or other representatives, or by some professionals.
His dialysis needs are important to decision-making in an emergency, so should be recorded.
The following day, during a meeting with his wife, his son, a Bengali interpreter, kidney and heart specialists, the clinical team explain that his current heart pumping efficiency limits his chance of having a successful kidney transplant. They explain that he can continue with dialysis and tablets to reduce the chance of rapid worsening of his heart condition. IA understands this, but nevertheless is content with his recent quality of life, and is clear that he wants his future care and treatment to focus primarily on sustaining life, including CPR if needed. This is agreed and recorded on his ReSPECT form.
The consultant explains that IA should take the ReSPECT form home with him, and keep it somewhere handy, making sure that his family know where it is kept and that they should show it to any health professional who is called in an emergency. He should take it with him when he goes for dialysis or other medical appointments. A few days later IA goes home.
It is crucial that all IA’s care providers know that IA has a ReSPECT form. The discharge summary should reach the GP without delay (i.e. ideally electronically) when IA leaves hospital.
IA has been ill and may not remember exactly what his ReSPECT form is, or what was agreed and recorded on it. A change in care setting such as this is one of the indications for reviewing the ReSPECT process and form with the person.
IA should take the ReSPECT form home with him and keep it immediately accessible. He should take it with him whenever he goes out.
The form should be reviewed before he leaves hospital, so should not need immediate review by the GP. It is not appropriate to tell a GP what to do and when. GPs will want to read the form when this is practicable, and consider what plans are needed for its future review.
One of the aims of ReSPECT is that it should be used, recognised and accepted by all health and care organisations in all parts of the UK, but some localities will adopt it before others and widespread introduction is likely to take some time.
Even if it has not been adopted in a locality, the information on it can still guide immediate decision-making in an emergency, if professionals are willing to read it, so people should carry it with them when they travel away from home.
Leaving it at home defeats the object of having a form, and it is important that he shows it to any health and care professional looking after him, so that they know how to respond if he has a sudden emergency in which he loses capacity.
Again, leaving it at home defeats the object of having a form, and it is important that he shows it to any health and care professional looking after him, so that they know how to respond if he has a sudden emergency in which he loses capacity.
NHS England, whilst supportive of ReSPECT, is not responsible for its management, so will not be able to offer detailed information via its website.
The dialysis unit where he will be treated should know and be able to advise whether they and their local community have adopted ReSPECT. Making them aware in advance that he has a ReSPECT form can help to alert them to the fact that he has a plan for emergency care.
The Resuscitation Council (UK) is leading the project, but a telephone call to the RC (UK) may not reach the person best able to answer a query about ReSPECT.
Expecting his family to find out is not a reliable way of giving him a clear answer to his question. They may not know who they should ask in their locality.
Such queries can be submitted via the ReSPECT website, after checking that the information required is not already offered on the website.
AB is a 61-year-old lady who has been recently diagnosed with an advanced recurrence of pancreatic cancer. She lives with her husband, who is visually impaired; she is his full-time carer. Her husband is known to the social services team. She has no close family but has a network of friends.
Following three cycles of palliative chemotherapy, which she found very unpleasant, a repeat CT shows that the cancer is not responding. Her oncologist discusses the option of second-line chemotherapy, but she decides that she does not want to have this.
Whilst she may not want further treatment to delay progression of her cancer, the focus should always be on her goals of treatment. These may be treatments that will maximise her comfort and enjoyment of whatever time she has left.
Referral to a palliative care team can help to ensure that she has access to those elements of care and treatment that will help to achieve her goals.
The ReSPECT process can help to ensure that her wishes and preferences are taken into account in the event of a future emergency in which she cannot make decisions or choices. The professional best placed to guide her through the process will depend on the person available who knows her and her family.
It is rarely appropriate to do this over the telephone. Whilst CPR may not prevent the death of a person dying from advanced cancer, there is a requirement to explain this to a person before recording a DNACPR recommendation. This is best done by following the ReSPECT process - ensuring that they understand their condition and prognosis, agreeing their goals of care, and then focusing on recommendations about treatment that will achieve those goals of care.
Ensuring that her husband’s social worker is aware of her situation and outlook will help to ensure that timely plans are made to address his care needs as her condition progresses and she is less able to care for him.
ReSPECT is complementary to a more detailed advance care plan, in which she can record other preferences for her care as she approaches the end of her life and after her death.
AB’s oncologist discusses second-line chemotherapy, but she decides that she does not want to have this. He offers referral to the palliative care team, which she accepts, and he tells her about ReSPECT. She says that she would like to discuss it with her husband and her GP and takes home an information leaflet.
She visits her GP, accompanied by her husband, and is supported through the ReSPECT process and completion of her ReSPECT form. The GP suggests that she discusses a more detailed advance care plan with the palliative care team.
Her husband’s dependence on her is a crucial piece of information to guide immediate decision-making in an emergency.
It is not appropriate to state that she refused further treatment. She was offered more chemotherapy but decided that it was not the right choice for her. That does not mean that she does not want further treatment to address her goals of care.
The use of medical jargon and abbreviations should be avoided, as some health and care workers may be unfamiliar with them, and the entries on the form should also be understandable by the person themselves.
The ReSPECT form is a summary to guide emergency decision-making, so should contain only the elements of past history or medication history that are likely to be relevant.
This example avoids medical jargon and abbreviations, making the diagnosis clearer to understand.
This summarises relevant clinical information
In the ReSPECT conversation, AB and her GP agree that her priority for care is maintaining comfort, and that what is most important to her is that her husband is cared for if she becomes too ill to help him. They agree also that CPR and admission to an ICU would not help her to achieve her goals of care. However, they agree that she would want to be considered for intravenous antibiotics and blood products if she needed these. All these recommendations are summarised in section 4 of her ReSPECT form. She is given the form to take home.
The ReSPECT form should be immediately accessible if she is taken ill suddenly and cannot express her wishes for immediate care and treatment.
Some localities have a ‘message in a bottle’ system, leaving a note in the refrigerator that directs emergency clinicians to the location of the form.
It should be kept handy, not filed away or given to a solicitor or other third party.
Her family and friends should know where to find it if she is taken ill.
It should be kept handy, not filed away or given to a solicitor or other third party.
She should take it with her if she goes out shopping – or goes out for any other purpose.
Eight days later she wakes in the night shivering and sweating and feeling very ill. She calls an emergency ambulance.
There is no suggestion that she has lost capacity, so the recommendations on the ReSPECT form are not needed to guide their immediate decisions, and AB must be allowed to make her own informed decisions about her care.
As with the previous answer, there is no suggestion that she has lost capacity, so the recommendations on the ReSPECT form are not needed to guide their immediate decisions, and AB must be allowed to make her own informed decisions about her care.
AB may deteriorate and lose capacity in transit, so awareness of the ReSPECT recommendations will help immediate decision-making if that were to happen.
The form should travel with her, so that it can be passed on to the hospital clinicians on arrival.
Through discussion with AB, and reading the form, the ambulance clinicians will be aware of her husband’s disability, and section 8 of the form should have a telephone number to contact for help with his care in an emergency.
She is taken to the local Emergency Department, is found to have a chest infection and is admitted to the respiratory ward. The ReSPECT form is handed to the admitting nurse.
The nurse should make sure that all (Medical, nursing and other ward staff) members of the healthcare team are aware of the ReSPECT form and its key content.
Again, the nurse should make sure that all (Medical, nursing and other ward staff) members of the healthcare team are aware of the ReSPECT form and its key content.
The organisation should have a standard place to keep ReSPECT forms, in order to provide immediate access when needed. That may be e.g. on the end of the bed, at the front of a folder of paper health records, or in an immediately accessible place in an electronic health record.
As with the previous answer, the organisation should have a standard place to keep ReSPECT forms, in order to provide immediate access when needed. That may be e.g. on the end of the bed, at the front of a folder of paper health records, or in an immediately accessible place in an electronic health record.
AB improves with intravenous antibiotics. The hospital palliative care team are made aware of her admission and see her. Her main concern is her husband and who is looking after him at home whilst she is in hospital. The ward nurses contact his social worker and his GP surgery to alert them to his needs and ask them to ensure that he has all the help that he needs.
Seven days after admission, her abdomen becomes swollen and she starts vomiting. Scans show that she has small bowel obstruction. The surgical team are asked to see her.
The surgeon discusses with her the choice between ‘conservative treatment’ and surgery. She says that she does not want an operation, so is treated with intravenous fluids and nasogastric suction.
Whenever a patient’s condition changes, the goals of care and the ReSPECT recommendations must be reviewed with a patient (or, should they lack capacity, using best interests principles) and ensure that they are changed if necessary.
It is not appropriate to delegate cancellation of a ReSPECT form to another professional.
When a person’s condition changes, requiring new or different recommendations, it is not appropriate to leave incorrect or incomplete recommendations in place whilst waiting for a possible response to treatment.
Involvement of the broader healthcare team in a person’s evolving care is an integral part of good clinical care, so continuing involvement of the palliative care team would be an essential part of that.
Unless AB does not want this, the surgeon should meet with her husband and explain to him her condition, the choice that she has made, and the likely outcome.
AB decides that she does not want any surgery, and this is added to section 4 of her ReSPECT form as an additional recommendation. The surgeon signs and dates section 9 to confirm the review.
Two days later her symptoms worsen. She is experiencing severe abdominal pain and she becomes confused. She is seen by another surgeon who wants to perform palliative surgery to try to relieve her symptoms. Because AB is now very confused, she does not have capacity to give informed consent.
Although AB’s decision not to have surgery was not recorded as a legally binding ADRT, it has been recorded as her express wish, so the team must take it into account when acting in her best interests. To ignore her known wishes would be unethical and probably unlawful.
As her wishes are already known, her husband must not be burdened with reconsidering her decision. Only if the situation is clearly not the one envisaged should a decision about surgery be reconsidered in her best interests, and in that context, her husband must be consulted.
As surgery is not an option, the focus of care remains maximising her comfort, so continuing advice from the palliative care team will be valuable.
As her confusion has prevented her participation in making decisions at this time, a formal capacity assessment should be made and documented in her health record.
AB is seen by a member of the palliative care team, who also talks to her husband and to his social worker, and they agree that in her advance care planning discussions with the palliative care consultant she had said that she did not want to die at home as she thought it would be too distressing and difficult for her husband. They agree that transfer to the local hospice would be best for her, and in keeping with her wishes. A hospice bed and ambulance transport are arranged for later that day.
She is likely to be in the last few days of her life, so it is crucial that the form is reviewed before transfer and the recommendations changed if necessary.
Her husband is being seen by the palliative care team member, so should be involved in reviewing the content of her form and making decisions in her best interests.
As she is in an advanced stage of dying from an irreversible condition, it is very unlikely that antibiotics or blood products would prevent her death or contribute to her comfort in the last few days of her life.
Once the ReSPECT form has been reviewed, and renewed if necessary, it should travel with her in the ambulance and to the hospice to provide continuity of communication about the plan for her care.
RM is a 22-year-old student who is involved in a road accident. When the ambulance clinicians arrive, RM is unconscious, and they bring him to the nearest hospital. A member of the trauma team who examines RM in the Emergency Department finds paralysis of his left arm and leg and suspects several fractured ribs.
Despite treatment with oxygen, RM is becoming hypoxic and ventilation treatment is started. A CT scan shows a subarachnoid haemorrhage with a small amount of bleeding into the right side of the brain. He is transferred to the Intensive Care Unit (ICU) for continuing treatment. The neurosurgeons examine the CT images and recommend that RM is transferred to their neurological centre for further assessment and consideration of possible surgery.
RM’s parents attend the ICU and are devastated to see their son in these circumstances. The ICU consultant explains that their son may need an operation to reduce the effects of the bleeding into his brain, or to prevent further bleeding.
RM has a life-threatening condition that could deteriorate suddenly at any time, so planning for such an emergency should not be delayed. Having a plan in place is crucial to guide decision-making by the ambulance clinicians if he deteriorates in transit to the neurosurgical centre.
As mentioned previously, RM has a life-threatening condition that could deteriorate suddenly at any time, so planning for such an emergency should not be delayed. Having a plan in place is crucial to guide decision-making by the ambulance clinicians if he deteriorates in transit to the neurosurgical centre.
A person being unconscious or lacking capacity for some other reason is not a barrier to applying ReSPECT. Their legal proxy (if they have one) or people close to them must be involved in the ReSPECT process, acting for their benefit and in their best interests.
A person being unconscious or lacking capacity for some other reason is not a barrier to applying ReSPECT. Their legal proxy (if they have one) or people close to them must be involved in the ReSPECT process, acting for their benefit and in their best interests.
Sometimes the ReSPECT process may be triggered by a request from the person themselves or their family or other representatives, but in a sudden severe illness of this nature RM’s family are unlikely to think of asking for it. The healthcare team should be considering and offering ReSPECT for anyone taken suddenly or seriously ill.
The ICU consultant has already met the parents, so is well-placed to lead the conversation.
Having a second health professional, such as a nurse, can help to provide support.
In this context RM’s parents must be involved in the conversation
The prognosis is uncertain, so this is too early to consider involvement of a transplant coordinator. However, sensitive exploration of RM’s views and wishes about transplantation should form part of the ReSPECT conversation, and those views or wishes should be recorded in section 2 of the form.
Involvement of the GP is unlikely and may not be especially helpful, as RM does not have any health problems for which he has seen his GP recently.
An ICU consultant in an organisation that is using ReSPECT should be familiar with the process. If any unexpected question arises during the process, the website may provide an answer.
Some people may find it helpful to read information about ReSPECT before having a ReSPECT conversation with health professionals, but this is not essential, and may not be possible in some circumstances (such as a critically ill person) where there is limited time available for the conversation.
Discussing the ReSPECT process and achieving a shared understanding of a person’s condition is essential. This includes being honest about their condition and prognosis and about any uncertainty. It is important to support people to help them to cope with such information.
The entries on the form are a summary of what was discussed and agreed during the conversation. Therefore, the only part of the form that can be completed before the conversation is detail of the person’s identity in section 1.
The ICU consultant explains to them that RM is very unwell. His condition could get suddenly worse and threaten his life. If he recovers, it is not certain whether he will be left with a disability due to brain damage from the bleeding. It is important that there is a plan in place to guide professionals faced with making an immediate decision about what is best to do for him in a sudden emergency.
After discussion, they reach a shared decision that there is still some possibility that he could make a good recovery, and the focus of care in an emergency should be on treatments that may help to sustain his life, including cardiopulmonary resuscitation. A ReSPECT form is completed, summarising these recommendations.
As RM is unconscious, he inevitably lacks capacity and so decisions about his treatment, including advance plans for future emergencies, must be made in his best interests.
Capacity and human rights laws require clinicians to involve people close to him, such as his family or other representatives, to be consulted as part of the decision-making process. Unless one or both of them holds power of attorney for such a decision, their role is to help clinicians to make a recommendation about CPR that is in RM’s best interests and consistent with his known views or beliefs.
RM is unconscious, so inevitably lacks capacity to make any decisions about his care and treatment. This should be noted in his health records, but a more detailed capacity assessment is not necessary or possible.
Capacity and human rights laws require clinicians to involve people close to him, such as his family or other representatives, to be consulted as part of the decision-making process. Unless one or both of them holds power of attorney for such a decision, their role is to help clinicians to make a recommendation about CPR that is in RM’s best interests and consistent with his known views or beliefs.
The ReSPECT recommendations are not legally binding; they should be used to guide immediate decision-making by health and care professionals who respond to the person in a crisis. If they are overridden, the healthcare professional should have and be prepared to justify valid reasons for overriding the recommendations.
The ICU doctors and nurses make sure that the ReSPECT form travels with RM to the neurological centre, that the ambulance clinicians have seen it and understand its content, and that the transfer letter tells the receiving clinicians that RM has a ReSPECT form. His transfer is uneventful.
On the neurosurgical high-dependency unit (HDU) the consultant and senior nurse read the ReSPECT form and agree to keep it under review in the light of RM’s progress. CT angiography shows an aneurysm as the cause of the bleeding requiring an operation to clip the aneurysm to reduce the risk of further bleeding. The neurosurgeon explains this to RM’s parents and that there is still a risk that he may not recover or that he will be left with some disability, and there is a small risk that the operation may lead to further brain damage. They agree that RM would want to go ahead with treatment to help him to try to recover. They discuss the ReSPECT form and agree that the entries are still correct.
Surgery is carried out and the aneurysm clipped as planned and RM is readmitted to the ICU. After a few days, the sedation is reduced and he is weaned from the ventilator, is able to breathe for himself, and he starts to speak. He is well enough to be transferred to the neurosurgical ward.
Although his risk of death or cardiac arrest is lower than it was, he is still at some risk of a sudden event, such as a seizure, so a plan for his emergency care is still important.
RM has regained consciousness and (unless suspected otherwise) has capacity to make his own choices. It will be good to keep his parents informed, but only with his agreement.
Since RM has regained consciousness and (unless suspected otherwise) has capacity to make his own choices, he should be offered the chance to have (or to decline) a new ReSPECT form, based on his own preferences rather than on decisions made in his best interests when he lacked capacity.
Again, since RM has regained consciousness and (unless suspected otherwise) has capacity to make his own choices, he should be offered the chance to have (or to decline) a new ReSPECT form, based on his own preferences rather than on decisions made in his best interests when he lacked capacity.
Whether you are leading the ReSPECT conversation or watching someone else, it is helpful to reflect on the conversation to help develop your practice. Learning from previous conversations will help to plan from future ones.
Following the conversation, it is good practice to debrief with a colleague who was present during the conversation or your supervisor/mentor. Having at least two perspectives enables on how the conversation went helps you to put together an accurate view of what happened and receive useful feedback.
DeleteYour PDF has been created, click 'View PDF' to view it, on iOS you can save the PDF to your iBooks library
View PDF Edit Form Create AnotherEveryone is different in their approach and style for these conversations. You evolve your own style with time and experience. Just like learning a practical procedure, skills for having difficult conversations need to be practiced and it is helpful to reflect and listen to feedback.
The tool below is to help prepare for a ReSPECT conversation, you can save it to use before or during the conversation. It is important you anonymise any identifiable information regarding patients or those involved in their care.
Think about…
DeleteYour PDF has been created, click 'View PDF' to view it, on iOS you can save the PDF to your iBooks library
View PDF Edit Form Create AnotherYour certificate has been emailed to you using the email address you provided when you signed up. To view the certificate, click below.
View Certificate