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Recommended Summary Plan for Emergency Care and Treatment

Welcome

Welcome to the ReSPECT educational materials. This web app has been designed to help you understand the ReSPECT process. What it is, who it’s for and how to use it in your role as a healthcare professional.

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MODULES

What is ReSPECT?

Approx 12 mins

Who is ReSPECT for?

Approx 4 mins

Having a conversation about ReSPECT

Approx 10 mins

How to check if the ReSPECT form has been filled in correctly

Completing the form (The practical stuff)

Approx 10 mins

How to care for someone with a ReSPECT form

Approx 10 mins

PRACTICAL TOOLS

Quiz me – Profiles

Quiz me – Whole Scenarios

Preparation Tool

De–Brief Tool

FAQs

What is ?

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INTRODUCTION

Introduction

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.

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ReSPECT 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.

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What is ReSPECT?

ReSPECT stands for Recommended Summary Plan for Emergency Care and Treatment
ReSPECT is different from many current DNACPR schemes and treatment escalation plans because:
- ReSPECT is proactive and not reactive.
- ReSPECT is personalised.
- ReSPECT involves more than just the person.
- ReSPECT is about much more than CPR decisions.
- ReSPECT applies nationally and in all settings.
- ReSPECT has been developed by national experts and members of the public.

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.

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Professional insight

“The ReSPECT process is all about thinking ahead with patients about realistic care options in a truly person-centred way. Ultimately the process aims to help people understand the care and treatment options that may be available to them in a medical emergency and enables them to make health professionals aware of their preferences”

Dr Juliet Spiller, Co-Chair of the ReSPECT Working Group & Consultant in Palliative care at Marie Curie Hospices, Edinburgh (website)

“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.”

Dr Peter-Marc Fortune, Co-Chair of the ReSPECT Working Group & Consultant Paediatrician

What recommendations can be included on the form?

Some recommendations for care and treatment, that may be considered when having a conversation, and completing a ReSPECT form include:

Admission to hospital from the community.
Having intravenous antibiotics for a life-threatening infection.
Urgent interventions, such as adrenaline for anaphylaxis, seizure control treatment and steroids in Addisonian crisis.
Receiving organ support, such as renal dialysis or ventilation.
Having blood products.
Having an operation.
Admission to an intensive care unit (ICU) or high-dependency unit (HDU).

Consider listing those things that are recommended initially, followed by those that are not recommended.

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How ReSPECT fits in with existing documents

What happens to DNACPR forms or treatment escalation plans (TEPs) that are already in existence?

Existing DNACPR forms and TEPs will continue to be effective and do not need to be replaced immediately. When healthcare communities implement the ReSPECT process there must be a robust plan to ensure that existing DNACPR forms or TEPs remain valid for a substantial period of overlap. ReSPECT is not 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.

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Practicalities of the form

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.

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Why was the ReSPECT process created?

ReSPECT 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:

be acceptable to patients, those important to patients, health professionals, carers and other members of the public.
be underpinned by a good decision-making process.
promote good decision-making.
promote dialogue between individuals and clinicians.
be used across all care settings.
be used for individuals of all ages.
use evidence and experience from other successful initiatives.
consider decisions about CPR within overall goals of care.

ReSPECT was created by representatives of the public and of:

Resuscitation Council (UK)
Royal College of Nursing
British Medical Association
Care Quality Commission
General Medical Council
Association of Ambulance Chief Executives
NHS Scotland
Royal College of Anaesthetists
Royal College of Emergency Medicine
Royal College of Physicians
Royal College of General Practitioners
Royal College of Surgeons Edinburgh
Professional Records Standards Body
Faculty of Intensive Care Medicine
Intensive Care Society
Association for Palliative Medicine
Paediatric Intensive Care Society
Child and Young Person’s Advance Care Plan Collaborative
Joint Royal Colleges Ambulance Liaison Committee
Marie Curie
Macmillan Cancer Support
Mencap
Cambridge University Hospitals
University of Southampton
Warwick Clinical Trials Unit
UCLPartners
Wellcome Trust
Helix Centre

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Law and ethics

“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.

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Quiz Me Next Module FAQs

A person with unexpected deterioration

SCENARIO INTRO

RM 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.

Show Intro

Start Quiz

When would be the best time to consider the ReSPECT process for RM?

1 / 5

Now

Yes

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.

OK, next

2 / 5

After transfer to the neurosurgical unit, when the prognosis will be clearer

Yes

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.

OK, next

3 / 5

When (if) RM regains consciousness

Yes

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.

OK, next

4 / 5

When (if) RM regains capacity

Yes

OK, next

5 / 5

Only if and when RM or his parents ask for it

Yes

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.

OK, next

A person having an intervention

SCENARIO INTRO

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.

Show Intro

Start Quiz

Which of the following would be appropriate outcomes from this visit?

1 / 5

She sees a GP who completes a DNACPR form

Yes

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.

OK, next

2 / 5

She sees a GP who explains to her about ReSPECT, advance care planning and ADRTs, gives her an information leaflet and asks her to come back next week

Yes

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).

OK, next

3 / 5

She sees a GP who has a ReSPECT conversation with her and completes a ReSPECT form

Yes

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.

OK, next

4 / 5

She sees an advanced nurse practitioner who says that she can’t help her and tells her to book an appointment with a doctor

Yes

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.

OK, next

5 / 5

She sees a GP who tells her to make an appointment to discuss this with her daughter present

Yes

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.

OK, next

Scenario Complete

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Who is for?

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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.

Close Video Transcript

Who is ReSPECT for?

Anyone can participate in the ReSPECT process, even if they are currently well, but it may be most relevant for people who have particular healthcare needs.
The ReSPECT process is best started and the form completed when a person is relatively well.
The ReSPECT process can be used for people of all ages.
Any professional involved in a person’s care can initiate the ReSPECT process with endorsement from the senior clinician.

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A person with an advanced terminal illness

SCENARIO INTRO

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.

Show Intro

Start Quiz

Which of the following further actions may help her?

1 / 6

The oncologist tells her that nothing more can be done for her

Yes

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.

OK, next

2 / 6

She is offered referral to a palliative care team

Yes

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.

OK, next

3 / 6

She is guided through the ReSPECT process by a community nurse

Yes

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.

OK, next

4 / 6

Her GP completes a DNACPR form and telephones her to explain this

Yes

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.

OK, next

5 / 6

Her GP contacts her husband’s social worker

Yes

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.

OK, next

6 / 6

She is guided through a detailed advance care plan

Yes

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.

OK, next

Scenario Complete

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Having a conversation about

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INTRODUCTION

Introduction

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.

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Before you have the conversation think about

People

Who should lead the conversation?

Ideally, 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.

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Who are you having the conversation with?

This 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.

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Which other team members should be there?

This 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.

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Timing

When is best to have the conversation?

Ideally, 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.

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Setting

Where to have the conversation

Where 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.

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Information gathering

Gathering information

Gathering relevant information about the person in preparation for the conversation is invaluable, such as their past and current medical history and what they are able to do for themselves. In addition, it is important to seek consensus about what interventions are appropriate should the person deteriorate with members of the multidisciplinary team and other relevant clinicians.
In a more urgent situation, the clinician with responsibility for the patient should gather as much information as possible about the person within the time frame without compromising best care.
It is also useful to understand what information the person and those important to them have already been given, their understanding of the current situation, what the future holds, and how they have responded to conversations like ReSPECT in the past.
It can be a challenge to understand the values and priorities of cultures different to our own and how these may impact on the person’s level of comprehension. Such values must be acknowledged and the conversation adapted accordingly, as their perception of quality of life and wishes for treatment may be very different.
It is essential to arrange for an interpreter where this is needed – try not to use the person’s family or other representatives to interpret.
Ensure those with eyesight or hearing impairments have appropriate aids.
Consider poor functional literacy, e.g. not being able to read forms or instructions, which may be difficult to detect due to shame and stigma. Look out for clues such as “I forgot my glasses”, “I will read it later”, or “I don’t like filling out forms.”

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During the conversation

Explain the purpose of the conversation

Explain 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.”

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Establish how much information the person wants to receive

It 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?”

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Establish what they know already

Establish 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?”

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Establish where possible the priorities and wishes of the person

Explore 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?”

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Explain the current and future clinical situation and treatment(s)

Explain 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.”

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Use plain language

Avoid 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.”

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Check their understanding

Do 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?”

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Summarise the conversation

To 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.

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Particular Challenges

People who do not want to engage in such a conversation

Some 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.

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What if a person does not want a ReSPECT form?

If 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.

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What if the person or their representatives disagree with a clinical decision?

In situations where the clinical team think that a particular treatment or intervention should not be initiated in an emergency because it will not work for the person (and that therefore a ReSPECT document is needed to record this) all attempts should be made to explain this to the person, 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.

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After the conversation

Documentation and sharing the decisions

It 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.

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Reflection and feedback

Everyone 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.

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Quiz Me Next Module FAQs

A person with unexpected deterioration

SCENARIO INTRO

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.

Show Intro

Start Quiz

Who should be involved in the initial ReSPECT conversation for RM

1 / 5

The ICU consultant

Yes

The ICU consultant has already met the parents, so is well-placed to lead the conversation.

OK, next

2 / 5

An ICU nurse

Yes

Having a second health professional, such as a nurse, can help to provide support.

OK, next

3 / 5

RM’s parents

Yes

In this context RM’s parents must be involved in the conversation

OK, next

4 / 5

The local transplant coordinator

Yes

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.

OK, next

5 / 5

RM’s GP

Yes

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.

OK, next

A person with unexpected deterioration

SCENARIO INTRO

Show Intro

Start Quiz

What preparation is needed before the conversation?

1 / 4

The ICU consultant reads all the information on the ReSPECT website

Yes

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.

OK, next

2 / 4

The parents read the information leaflet

Yes

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.

OK, next

3 / 4

The ICU consultant and nurse discuss RM’s condition

Yes

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.

OK, next

4 / 4

Section 2 of the form is completed

Yes

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.

OK, next

A person with a chronic health condition

SCENARIO INTRO

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.

Show Intro

Start Quiz

What should any health professional do if a person says that they do not want to discuss ReSPECT or have information about it?

1 / 5

Consider whether there are cultural or religious reasons for their decision

Yes

People may have different reasons for declining discussion or information about any aspect of their health. These include cultural and religious attitudes and beliefs.

OK, next

2 / 5

Consider whether they have any difficulty in understanding what has been explained, or in reading information in the format offered

Yes

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.

OK, next

3 / 5

Tell them that if they do not want to discuss ReSPECT, a form will be completed without their involvement

Yes

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.

OK, next

4 / 5

Record in their health record that they have been offered ReSPECT but do not want to discuss it yet

Yes

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.

OK, next

5 / 5

Respect their choice, but offer them opportunities to reconsider later, if and when they want to do that

Yes

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.

OK, next

A person with a chronic health condition

SCENARIO INTRO

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.

Show Intro

Start Quiz

Who may be best placed to start the ReSPECT conversation in this setting?

1 / 6

The cardiology registrar

Yes

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.

OK, next

2 / 6

The dialysis nurse specialist

Yes

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.

OK, next

3 / 6

A coronary care nurse

Yes

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.

OK, next

4 / 6

A consultant cardiologist

Yes

Whoever has the conversation with him must have the necessary skills and knowledge to explain things clearly and answer his questions.

OK, next

5 / 6

His GP

Yes

Realistically, it is unlikely that a GP will be able to come to the hospital to have the ReSPECT conversation.

OK, next

6 / 6

A palliative care consultant

Yes

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.

OK, next

A person with a chronic health condition

SCENARIO INTRO

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.

Show Intro

Start Quiz

What preparation is essential for this ReSPECT conversation?

1 / 6

A formal assessment of his capacity

Yes

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.

OK, next

2 / 6

Finding a quiet room with comfortable seating

Yes

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.

OK, next

3 / 6

Ensuring minimal chance of interruption

Yes

Ensuring that the chance of interruption (e.g. by telephones or bleeps) is kept to a minimum should be achievable.

OK, next

4 / 6

Planning a date and time when all his family can be there

Yes

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.

OK, next

5 / 6

Knowing details of his condition and its treatment and prognosis

Yes

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.

OK, next

6 / 6

Discussion between cardiology and renal teams

Yes

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.

OK, next

Scenario Complete

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How to check if the form has been filled in correctly

Completing the form (The practical stuff)

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INTRODUCTION

Introduction

Click any box on the form to see an explanation of how it should be filled in.

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SIDE 1

Section 4 Clinical recommendations for emergency care and treatment

Record to indicate if the focus is on life-sustaining treatment or focus on symptom control. Only one of the boxes should be signed
Record of specific recommendations to guide immediate decision-making in an
emergency situation when the person cannot express their wishes.
Record of whether or not attempted CPR is recommended, and for children only, to recommend modified CPR. Only one of these boxes should be signed. If more than one box is signed then this is a serious error and the senior responsibly clinician needs to be alerted as soon as possible. If this error is noticed in an emergency situation, where the person cannot express their wishes, you must act in their best interests.

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.

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SIDE 2

Storing the form

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.

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Capacity - Adults

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Capacity - Children and young persons

If 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.

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Real world tips

The ‘S’ in ReSPECT stands for ‘summary’ – in an emergency, people may not have time to read lots of text, so be clear and succinct – the information should be accessible at a glance. You can signpost to clinical records where a more detailed documentation of conversations and preferences exists.
Write legibly – so there are no misinterpretations.
Think about who is going to read the form – use plain English, avoiding medical jargon and abbreviations as much as possible, as the form may be read or acted on by people with little or no medical or specialist knowledge. Think about who may need to use the form to help them make immediate decisions e.g. ambulance clinicians, out-of-hours doctors, community nurses, care home staff, hospital nurses and doctors.
Think about where the form may be used – and where the person may be when an emergency occurs, and ensure that the recommendations are relevant to all those settings.
Take time to complete the form – time spent discussing preferences and completing the form well will help ensure that the person gets their agreed treatment, and will save time during their further care, especially in a crisis, when decisions have to be made without delay.
Sign the correct boxes – take care to sign the correct boxes on the form to indicate the priorities of care and the recommendation about CPR. Signing the incorrect boxes can have serious consequences.
Sign the form – the person who has had the conversation and completed the form with the person should be the first signatory. Add a legible signature and legible name and registration number. The senior responsible clinician, such as the person’s GP, consultant, or senior nurse, is responsible for the plan and if they are not the initial signatory they should sign to endorse it as soon as possible.
Inform others looking after the person – if a form has been completed or updated ensure those involved in the person’s care are up to date with the recommendations.

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SAMPLE FORMS

Preview Scenario 1 AB's Form Preview Scenario 2 IA's Form Preview Scenario 3 RM's Form Preview Scenario 4 NF's Form Preview Scenario 5 TM's Form

Quiz Me Next Module FAQs

A person lacking mental capacity

SCENARIO INTRO

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 lives nearby and sees her at least weekly. Her son lives further away and visits every few weeks.

Show Intro

Start Quiz

What further information does the community matron need?

1 / 5

What type of LPA do they hold?

Yes

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.

OK, next

2 / 5

Do they hold it jointly or individually?

Yes

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.

OK, next

3 / 5

Has it been registered with the Office of the Public Guardian (OPG)?

Yes

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.

OK, next

4 / 5

Does it include the power to decide about life-sustaining treatments?

Yes

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.

OK, next

5 / 5

Has NF made an Advance Decision to Refuse Treatment (ADRT)?

Yes

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.

OK, next

A person with unexpected deterioration

SCENARIO INTRO

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.

Show Intro

Start Quiz

Which of the following should form part of the ReSPECT process and ReSPECT form for RM?

1 / 5

Decisions about the content of his form should be made in his best interests

Yes

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.

OK, next

2 / 5

His parents should be asked to decide whether he should receive CPR

Yes

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.

OK, next

3 / 5

A detailed assessment of RM’s capacity should be documented in his health records

Yes

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.

OK, next

4 / 5

His parents should be told that, as he is an adult, they have no say in his treatment

Yes

OK, next

5 / 5

His parents are told that the form is legally binding

Yes

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.

OK, next

A person with an advanced terminal illness

SCENARIO INTRO

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.

Show Intro

Start Quiz

Which of these entries are appropriate in section 2 of her ReSPECT form?

1 / 6

Main carer for blind husband

Yes

Her husband’s dependence on her is a crucial piece of information to guide immediate decision-making in an emergency.

OK, next

2 / 6

Refused further treatment

Yes

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.

OK, next

3 / 6

Ca pancreas with hepatic and LN mets

Yes

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.

OK, next

4 / 6

Past history of carpal tunnel syndrome and left hip replacement

Yes

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.

OK, next

5 / 6

Cancer of pancreas, with spread to liver

Yes

This example avoids medical jargon and abbreviations, making the diagnosis clearer to understand.

OK, next

6 / 6

Initial chemotherapy ineffective; does not want more

Yes

This summarises relevant clinical information

OK, next

A person with a chronic health condition

SCENARIO INTRO

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.

Show Intro

Start Quiz

How could the ReSPECT process help IA at this time?

1 / 4

By ensuring that he understands his present condition and likely future progress

Yes

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.

OK, next

2 / 4

By recording his history of cellulitis in case of recurrence

Yes

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.

OK, next

3 / 4

By recording his preferences in case of a sudden complication during dialysis

Yes

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.

OK, next

4 / 4

By recording his wife’s communication needs in case of a future emergency

Yes

Recording his wife’s communication needs will also help to guide immediate decisions if he has an emergency in which he cannot communicate.

OK, next

A person with a chronic health condition

SCENARIO INTRO

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.

Show Intro

Start Quiz

Which of the following are appropriate entries on his ReSPECT form?

1 / 4

Wife has limited English – speaks Bengali

Yes

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.

OK, next

2 / 4

Came from Bangladesh 10 years ago, to work as a civil engineer

Yes

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.

OK, next

3 / 4

NSTEMI – echo shows EF 16%

Yes

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.

OK, next

4 / 4

Has haemodialysis twice a week

Yes

His dialysis needs are important to decision-making in an emergency, so should be recorded.

OK, next

Scenario Complete

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How to care for someone with a form

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INTRODUCTION

Introduction

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.

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What 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

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

Read the form to understand which recommendations may relate to your role in their care.

Act

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:

when the person, or their representative, asks for this.
when there has been a significant change in the person’s condition.
when the person is moving, or has moved from one setting to another, such as from home to hospital.

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.

Close Video Transcript

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.
Read the form.
Act on the recommendations relevant to your role.

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.

Delete

Storing the form

Delete

How to care for someone with the ReSPECT form in the hospital

In 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.

Delete

How to care for someone with the ReSPECT form in the community

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.

Delete

How to care for someone with the ReSPECT form in a care home

All 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.

Delete

How to care for someone with the ReSPECT form in a hospice

All 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.

Delete

How to care for a child or young person with a ReSPECT form

Advance 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

Delete

Quiz Me FAQs

A person lacking mental capacity

SCENARIO INTRO

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.

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.

Show Intro

Start Quiz

What should the GP do?

1 / 5

Prescribe analgesia by injection?

Yes

She is in pain and needs prompt treatment to control this

OK, next

2 / 5

Contact the son and daughter?

Yes

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.

OK, next

3 / 5

Read her ReSPECT form?

Yes

Reading the ReSPECT form will provide the GP with succinct information that may help immediate decision-making, and will draw attention to the LPA.

OK, next

4 / 5

Infer from the recommendations that she should not be sent to hospital?

Yes

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.

OK, next

5 / 5

Dial 999 and send her to the nearest Emergency Department?

Yes

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.

OK, next

A person lacking mental capacity

SCENARIO INTRO

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.

Show Intro

Start Quiz

When the ambulance arrives, which of the following is correct?

1 / 4

As the patient has a ReSPECT form, no other handover is needed.

Yes

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.

OK, next

2 / 4

The GP should be there to give handover personally.

Yes

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.

OK, next

3 / 4

The ReSPECT form should be kept at the care home in case it gets lost at the hospital.

Yes

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.

OK, next

4 / 4

The ambulance clinicians do not need to know what is on the ReSPECT form.

Yes

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.

OK, next

A person lacking mental capacity

SCENARIO INTRO

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.

Show Intro

Start Quiz

What should the consultant do?

1 / 4

Seek informed consent for surgery from the son and/or daughter.

Yes

The son and daughter hold LPA for her health and welfare so must be consulted about her treatment, which requires their informed consent.

OK, next

2 / 4

Cancel her ReSPECT form in case she needs ICU care after surgery.

Yes

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.

OK, next

3 / 4

Refuse to operate unless her DNACPR recommendation is cancelled.

Yes

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.

OK, next

4 / 4

Discuss her treatment plan with the multidisciplinary team.

Yes

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.

OK, next

A person with unexpected deterioration

SCENARIO INTRO

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.

Show Intro

Start Quiz

What should the neurosurgical team do about the ReSPECT form?

1 / 4

Cancel it as he is no longer at high risk of death or cardiac arrest

Yes

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.

OK, next

2 / 4

Ask his parents if they still want him to have it?

Yes

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.

OK, next

3 / 4

Explain it to RM and give him the chance to have a new form based on his personal preferences.

Yes

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.

OK, next

4 / 4

Leave it in place unchanged, as he is getting better and should still be for full and active treatment

Yes

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.

OK, next

A person with an advanced terminal illness

SCENARIO INTRO

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.

Show Intro

Start Quiz

What should she do with her ReSPECT form?

1 / 5

File it away with her will in a binder on the bookshelf

Yes

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.

OK, next

2 / 5

Keep it handy

Yes

It should be kept handy, not filed away or given to a solicitor or other third party.

OK, next

3 / 5

Tell her husband where to find it

Yes

Her family and friends should know where to find it if she is taken ill.

OK, next

4 / 5

Give it to her solicitor

Yes

It should be kept handy, not filed away or given to a solicitor or other third party.

OK, next

5 / 5

Put it in her handbag when she goes shopping

Yes

She should take it with her if she goes out shopping – or goes out for any other purpose.

OK, next

Scenario Complete

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Teaching modules

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.

Module Content

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.

Learning Tools

Example scenarios with questions will enable you to apply your learning to hypothetical situations. There are also tools designed to help you prepare and de-brief before and after real life ReSPECT conversations.

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You can save information from the app as cards. You are able to build a deck of cards that contain the information you need to access quickly.

Go to Modules

FAQs

About the ReSPECT Form

Please find full FAQ's about ReSPECT at -

http://respectprocess.org.uk/faqs

About This App

What is a Module?

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.

What are the Practical Tools?

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

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Profiles

Which of these people do you think should be offered the ReSPECT process at present? Choose ‘yes’ or ‘no’. An explanation will be given for the answer to each.

1 / 19

Yes

Next Profile

2 / 19

Yes

Next Profile

3 / 19

Yes

Next Profile

4 / 19

Yes

Next Profile

5 / 19

Yes

Next Profile

6 / 19

Yes

Next Profile

7 / 19

Yes

Next Profile

8 / 19

Yes

Next Profile

9 / 19

Yes

Next Profile

10 / 19

Yes

Next Profile

11 / 19

Yes

Next Profile

12 / 19

Yes

Next Profile

13 / 19

Yes

Next Profile

14 / 19

Yes

Next Profile

15 / 19

Yes

Next Profile

16 / 19

Yes

Next Profile

17 / 19

Yes

Next Profile

18 / 19

Yes

Next Profile

19 / 19

Yes

Next Profile

Complete

Go to Modules

Scenarios

Work through the following case scenarios to learn about the ReSPECT process. Choose ‘yes’ or ‘no’ to answer each question. An explanation will be given for the answer to each. You can track your progress. If you cannot complete the scenarios in one sitting you have the option to come back to where you left off.

A person having an intervention Completed

A person lacking mental capacity Completed

A person with a chronic health condition Completed

A person with an advanced terminal illness Completed

A person with unexpected deterioration Completed

Complete all the scenarios & profiles to get a certificate

You have completed the scenarios, now complete the profiles to get a certificate

You have completed the profiles, now complete the scenarios to get a certificate

Click here to view and download your certificate.

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A person having an intervention

Question 1

SCENARIO INTRO

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.

Show Intro

Start Quiz

Which of the following would be appropriate outcomes from this visit?

1 / 5

She sees a GP who completes a DNACPR form

Yes

OK, next

2 / 5

She sees a GP who explains to her about ReSPECT, advance care planning and ADRTs, gives her an information leaflet and asks her to come back next week

Yes

OK, next

3 / 5

She sees a GP who has a ReSPECT conversation with her and completes a ReSPECT form

Yes

OK, next

4 / 5

She sees an advanced nurse practitioner who says that she can’t help her and tells her to book an appointment with a doctor

Yes

OK, next

5 / 5

She sees a GP who tells her to make an appointment to discuss this with her daughter present

Yes

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.

OK, next

Go Back

A person having an intervention

Question 2

SCENARIO INTRO

Her GP completes a ReSPECT form with her, based on their conversation and shared decision-making about its content.

Show Intro

Continue

Which of the following are appropriate entries on her ReSPECT form?

1 / 6

Section 2: Daughter aware of her wishes

Yes

Knowing that her daughter is aware of her wishes may help those faced with contacting the daughter about TM in an emergency.

OK, next

2 / 6

Section 3: Not being a burden to anyone

Yes

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.

OK, next

3 / 6

Section 4: Focus on life-sustaining treatment

Yes

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.

OK, next

4 / 6

Section 4: Active treatment for reversible illness (e.g. infection)

Yes

OK, next

5 / 6

Section 4: Ventilation and renal dialysis not wanted

Yes

OK, next

6 / 6

Section 6: A

Yes

As these recommendations have been agreed with her when she has capacity, statement A should be selected in section 6.

OK, next

Go Back

A person having an intervention

Question 3

SCENARIO INTRO

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.

Show Intro

Continue

Which of the following should the cardiologist do?

1 / 4

Explain that cardiac arrest is a rare but recognised complication during pacemaker implantation but is usually rapidly reversible, and offer her the opportunity to reverse the recommendation about CPR during the procedure and immediate recovery period

Yes

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.

OK, next

2 / 4

Ignore the ReSPECT form and get on with implanting the pacemaker

Yes

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.

OK, next

3 / 4

Encourage her to discuss the new situation with her daughter

Yes

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.

OK, next

4 / 4

Refuse to go ahead with pacemaker implantation

Yes

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.

OK, next

Go Back

A person having an intervention

Question 4

SCENARIO INTRO

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.

Show Intro

Continue

What should be done with the ReSPECT form when she attends for pacemaker implantation?

1 / 4

Tell her to leave her ReSPECT form at home when she attends

Yes

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.

OK, next

2 / 4

Create a new ReSPECT form when she attends for pacemaker implantation, recommending CPR but not ventilation or dialysis, and tell her to keep the old form for use when she goes home

Yes

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.

OK, next

3 / 4

Create a new ReSPECT form when she attends for pacemaker implantation, recommending CPR but not ventilation or dialysis and cancel the existing form

Yes

OK, next

4 / 4

On the existing form, cross out the signature in the ‘CPR attempts NOT recommended’ box and sign the ‘CPR attempts recommended’ box

Yes

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.

OK, next

Go Back

A person having an intervention

Question 5

SCENARIO INTRO

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.

Show Intro

Continue

Which of the following statements is correct?

1 / 4

There is nothing to suggest that she has lost capacity, so he should seek her informed consent to emergency chest drain insertion

Yes

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.

OK, next

2 / 4

Pneumothorax is a recognised complication of pacemaker implantation, so her consent to pacemaker implantation automatically includes consent to treatment of complications

Yes

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.

OK, next

3 / 4

He should be cautious about inserting a chest drain as this is a life-sustaining intervention and she has recorded that she does not want CPR

Yes

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.

OK, next

4 / 4

Tension pneumothorax is a reversible illness so the ReSPECT form authorises him to go ahead with chest drain insertion

Yes

OK, next

Go Back

Scenario Complete

TM has a chest drain inserted and is admitted to the cardiology ward. Her pneumothorax resolves and the chest drain is removed. The cardiology registrar reviews her ReSPECT form with her again before discharge and she is content that her previously agreed recommendations remain.

Go back

A person lacking mental capacity

Question 1

SCENARIO INTRO

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.

Show Intro

Start Quiz

What further information does the community matron need?

1 / 5

What type of LPA do they hold?

Yes

OK, next

2 / 5

Do they hold it jointly or individually?

Yes

OK, next

3 / 5

Has it been registered with the Office of the Public Guardian (OPG)?

Yes

OK, next

4 / 5

Does it include the power to decide about life-sustaining treatments?

Yes

OK, next

5 / 5

Has NF made an Advance Decision to Refuse Treatment (ADRT)?

Yes

OK, next

Go Back

A person lacking mental capacity

Question 2

SCENARIO INTRO

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.

Show Intro

Continue

What should the GP do?

1 / 5

Prescribe analgesia by injection?

Yes

She is in pain and needs prompt treatment to control this

OK, next

2 / 5

Contact the son and daughter?

Yes

OK, next

3 / 5

Read her ReSPECT form?

Yes

Reading the ReSPECT form will provide the GP with succinct information that may help immediate decision-making, and will draw attention to the LPA.

OK, next

4 / 5

Infer from the recommendations that she should not be sent to hospital?

Yes

OK, next

5 / 5

Dial 999 and send her to the nearest Emergency Department?

Yes

OK, next

Go Back

A person lacking mental capacity

Question 3

SCENARIO INTRO

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.

Show Intro

Continue

When the ambulance arrives, which of the following is correct?

1 / 4

As the patient has a ReSPECT form, no other handover is needed.

Yes

OK, next

2 / 4

The GP should be there to give handover personally.

Yes

OK, next

3 / 4

The ReSPECT form should be kept at the care home in case it gets lost at the hospital.

Yes

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.

OK, next

4 / 4

The ambulance clinicians do not need to know what is on the ReSPECT form.

Yes

OK, next

Go Back

A person lacking mental capacity

Question 4

SCENARIO INTRO

Show Intro

Continue

What should the consultant do?

1 / 4

Seek informed consent for surgery from the son and/or daughter.

Yes

The son and daughter hold LPA for her health and welfare so must be consulted about her treatment, which requires their informed consent.

OK, next

2 / 4

Cancel her ReSPECT form in case she needs ICU care after surgery.

Yes

OK, next

3 / 4

Refuse to operate unless her DNACPR recommendation is cancelled.

Yes

OK, next

4 / 4

Discuss her treatment plan with the multidisciplinary team.

Yes

OK, next

Go Back

Scenario Complete

The following day she has a left hip replacement. On the orthopaedic ward, she starts to mobilise slowly, and is transferred to a rehabilitation ward. There, she struggles to follow instructions from the physiotherapists. On checking her ReSPECT form, the physiotherapist realises that she is not wearing the hearing aid that is mentioned in section 2. On locating the hearing aid and fitting a fresh battery, she is able to follow the physiotherapist’s instructions much better. A week later, she is able to walk short distances using two sticks. Arrangements are made for her transfer back to the care home the following day. However, that evening, as she is walking to the toilet, she collapses on the floor and is found to be very breathless and cyanosed. The orthopaedic registrar is called, but before his arrival she becomes unresponsive and stops breathing. The nurses have all been trained in the use of ReSPECT, and allow NF to die with as much dignity as possible in the circumstances. The orthopaedic registrar arrives and tells them that they should have started CPR. They are upset by this, but the Senior Charge Nurse in orthopaedics supports their actions and reassures them. The Medical Examiner later reviews the circumstances of NF’s death, confirms that the nurses acted correctly, and arranges for the orthopaedic registrar to receive feedback and further training in the use of ReSPECT.

Go back

A person with a chronic health condition

Question 1

SCENARIO INTRO

Show Intro

Start Quiz

How could the ReSPECT process help IA at this time?

1 / 4

By ensuring that he understands his present condition and likely future progress

Yes

OK, next

2 / 4

By recording his history of cellulitis in case of recurrence

Yes

OK, next

3 / 4

By recording his preferences in case of a sudden complication during dialysis

Yes

OK, next

4 / 4

By recording his wife’s communication needs in case of a future emergency

Yes

Recording his wife’s communication needs will also help to guide immediate decisions if he has an emergency in which he cannot communicate.

OK, next

Go Back

A person with a chronic health condition

Question 2

SCENARIO INTRO

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.

Show Intro

Continue

What should any health professional do if a person says that they do not want to discuss ReSPECT or have information about it?

1 / 5

Consider whether there are cultural or religious reasons for their decision

Yes

People may have different reasons for declining discussion or information about any aspect of their health. These include cultural and religious attitudes and beliefs.

OK, next

2 / 5

Consider whether they have any difficulty in understanding what has been explained, or in reading information in the format offered

Yes

OK, next

3 / 5

Tell them that if they do not want to discuss ReSPECT, a form will be completed without their involvement

Yes

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.

OK, next

4 / 5

Record in their health record that they have been offered ReSPECT but do not want to discuss it yet

Yes

OK, next

5 / 5

Respect their choice, but offer them opportunities to reconsider later, if and when they want to do that

Yes

OK, next

Go Back

A person with a chronic health condition

Question 3

SCENARIO INTRO

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.

Show Intro

Continue

Who may be best placed to start the ReSPECT conversation in this setting?

1 / 6

The cardiology registrar

Yes

OK, next

2 / 6

The dialysis nurse specialist

Yes

OK, next

3 / 6

A coronary care nurse

Yes

OK, next

4 / 6

A consultant cardiologist

Yes

Whoever has the conversation with him must have the necessary skills and knowledge to explain things clearly and answer his questions.

OK, next

5 / 6

His GP

Yes

Realistically, it is unlikely that a GP will be able to come to the hospital to have the ReSPECT conversation.

OK, next

6 / 6

A palliative care consultant

Yes

OK, next

Go Back

A person with a chronic health condition

Question 4

What preparation is essential for this ReSPECT conversation?

1 / 6

A formal assessment of his capacity

Yes

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.

OK, next

2 / 6

Finding a quiet room with comfortable seating

Yes

OK, next

3 / 6

Ensuring minimal chance of interruption

Yes

Ensuring that the chance of interruption (e.g. by telephones or bleeps) is kept to a minimum should be achievable.

OK, next

4 / 6

Planning a date and time when all his family can be there

Yes

OK, next

5 / 6

Knowing details of his condition and its treatment and prognosis

Yes

OK, next

6 / 6

Discussion between cardiology and renal teams

Yes

OK, next

Go Back

A person with a chronic health condition

Question 5

Which of the following are appropriate entries on his ReSPECT form?

1 / 4

Wife has limited English – speaks Bengali

Yes

OK, next

2 / 4

Came from Bangladesh 10 years ago, to work as a civil engineer

Yes

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.

OK, next

3 / 4

NSTEMI – echo shows EF 16%

Yes

OK, next

4 / 4

Has haemodialysis twice a week

Yes

His dialysis needs are important to decision-making in an emergency, so should be recorded.

OK, next

Go Back

A person with a chronic health condition

Question 6

SCENARIO INTRO

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.

Show Intro

Continue

When IA leaves hospital, which of the following is appropriate?

1 / 4

The discharge summary states that a ReSPECT form has been completed and sent home with him

Yes

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.

OK, next

2 / 4

The professionals involved in his discharge check that he understands and remains in agreement with the entries on the form

Yes

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.

OK, next

3 / 4

The ReSPECT form should be filed in IA’s hospital records

Yes

IA should take the ReSPECT form home with him and keep it immediately accessible. He should take it with him whenever he goes out.

OK, next

4 / 4

The discharge summary tells the GP to review the ReSPECT form as soon as IA arrives home

Yes

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.

OK, next

Go Back

A person with a chronic health condition

Question 7

What should the team advise him about taking his form with him?

1 / 4

Take it with him

Yes

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.

OK, next

2 / 4

Only take it with him if ReSPECT has been adopted in the locality where he will be

Yes

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.

OK, next

3 / 4

Leave it at home in case he loses it

Yes

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.

OK, next

4 / 4

Show it to the dialysis team when he arrives there for treatment

Yes

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.

OK, next

Go Back

A person with a chronic health condition

Question 8

How could they find out for him whether his ReSPECT form will be recognised and accepted whilst he is there?

1 / 5

Look it up on the NHS England website

Yes

NHS England, whilst supportive of ReSPECT, is not responsible for its management, so will not be able to offer detailed information via its website.

OK, next

2 / 5

Ask the staff at the dialysis unit where he will be treated

Yes

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.

OK, next

3 / 5

Telephone the Resuscitation Council (UK)

Yes

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.

OK, next

4 / 5

Tell IA to get his family to find out

Yes

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.

OK, next

5 / 5

Enquire via the ReSPECT website

Yes

Such queries can be submitted via the ReSPECT website, after checking that the information required is not already offered on the website.

OK, next

Go Back

Scenario Complete

IA visits his family and attends the wedding and the dialysis sessions that were arranged for him. Whilst there, he shows his ReSPECT form to his elder brother, who has cancer of the prostate. Following this, his brother makes an appointment with his own doctor, to ask to go through the ReSPECT process himself.

Go back

A person with an advanced terminal illness

Question 1

SCENARIO INTRO

Show Intro

Start Quiz

Which of the following further actions may help her?

1 / 6

The oncologist tells her that nothing more can be done for her

Yes

OK, next

2 / 6

She is offered referral to a palliative care team

Yes

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.

OK, next

3 / 6

She is guided through the ReSPECT process by a community nurse

Yes

OK, next

4 / 6

Her GP completes a DNACPR form and telephones her to explain this

Yes

OK, next

5 / 6

Her GP contacts her husband’s social worker

Yes

OK, next

6 / 6

She is guided through a detailed advance care plan

Yes

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.

OK, next

Go Back

A person with an advanced terminal illness

Question 2

SCENARIO INTRO

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.

Show Intro

Continue

Which of these entries are appropriate in section 2 of her ReSPECT form?

1 / 6

Main carer for blind husband

Yes

Her husband’s dependence on her is a crucial piece of information to guide immediate decision-making in an emergency.

OK, next

2 / 6

Refused further treatment

Yes

OK, next

3 / 6

Ca pancreas with hepatic and LN mets

Yes

OK, next

4 / 6

Past history of carpal tunnel syndrome and left hip replacement

Yes

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.

OK, next

5 / 6

Cancer of pancreas, with spread to liver

Yes

This example avoids medical jargon and abbreviations, making the diagnosis clearer to understand.

OK, next

6 / 6

Initial chemotherapy ineffective; does not want more

Yes

This summarises relevant clinical information

OK, next

Go Back

A person with an advanced terminal illness

Question 3

SCENARIO INTRO

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.

Show Intro

Continue

What should she do with her ReSPECT form?

1 / 5

File it away with her will in a binder on the bookshelf

Yes

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.

OK, next

2 / 5

Keep it handy

Yes

It should be kept handy, not filed away or given to a solicitor or other third party.

OK, next

3 / 5

Tell her husband where to find it

Yes

Her family and friends should know where to find it if she is taken ill.

OK, next

4 / 5

Give it to her solicitor

Yes

It should be kept handy, not filed away or given to a solicitor or other third party.

OK, next

5 / 5

Put it in her handbag when she goes shopping

Yes

She should take it with her if she goes out shopping – or goes out for any other purpose.

OK, next

Go Back

A person with an advanced terminal illness

Question 4

SCENARIO INTRO

Eight days later she wakes in the night shivering and sweating and feeling very ill. She calls an emergency ambulance.

Show Intro

Continue

What should the ambulance clinicians do?

1 / 5

Ask her if she wants to be taken to hospital

Yes

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.

OK, next

2 / 5

Read her ReSPECT form and follow the recommendations

Yes

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.

OK, next

3 / 5

Read her ReSPECT form before taking her to hospital

Yes

AB may deteriorate and lose capacity in transit, so awareness of the ReSPECT recommendations will help immediate decision-making if that were to happen.

OK, next

4 / 5

Leave her ReSPECT form with her husband for safe keeping

Yes

The form should travel with her, so that it can be passed on to the hospital clinicians on arrival.

OK, next

5 / 5

Call someone who can provide care for her husband

Yes

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.

OK, next

Go Back

A person with an advanced terminal illness

Question 5

SCENARIO INTRO

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.

Show Intro

Continue

What should the nurse do with the ReSPECT form?

1 / 4

Show it to the admitting doctor

Yes

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.

OK, next

2 / 4

Read it and summarise its content at nursing handover

Yes

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.

OK, next

3 / 4

File it with the ambulance patient record form

Yes

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.

OK, next

4 / 4

Give it to the patient to keep in the bedside locker

Yes

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.

OK, next

Go Back

A person with an advanced terminal illness

Question 6

SCENARIO INTRO

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.

Show Intro

Continue

What else should the surgeon do?

1 / 5

Review the ReSPECT form with AB to agree whether to add a recommendation to avoid abdominal surgery to section 4

Yes

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.

OK, next

2 / 5

Tell the nurse to cancel the ReSPECT form as it’s out of date

Yes

It is not appropriate to delegate cancellation of a ReSPECT form to another professional.

OK, next

3 / 5

Ignore the ReSPECT form and wait to see whether she responds to treatment

Yes

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.

OK, next

4 / 5

Ask the palliative care team to see her again

Yes

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.

OK, next

5 / 5

Arrange to see her husband

Yes

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.

OK, next

Go Back

A person with an advanced terminal illness

Question 7

SCENARIO INTRO

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.

Show Intro

Continue

What should the healthcare team do?

1 / 4

Show the surgeon the ReSPECT form and explain that AB made it clear that she did not want surgery and did not want ICU care

Yes

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.

OK, next

2 / 4

Ask her husband what he wants them to do

Yes

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.

OK, next

3 / 4

Obtain further help and advice from the palliative care team

Yes

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.

OK, next

4 / 4

Carry out a capacity assessment and document the findings in her health record

Yes

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.

OK, next

Go Back

A person with an advanced terminal illness

Question 8

SCENARIO INTRO

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.

Show Intro

Continue

What should the healthcare team do about her ReSPECT form?

1 / 4

Leave it unchanged

Yes

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.

OK, next

2 / 4

Review it with her husband

Yes

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.

OK, next

3 / 4

Consider changing the previously recorded recommendations about antibiotics and blood products

Yes

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.

OK, next

4 / 4

Make sure that it stays in her hospital records when she leaves for the hospice

Yes

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.

OK, next

Go Back

Scenario Complete

AB’s ongoing care and treatment includes regular small doses of Oramorph to minimise distress from her cough and breathlessness, regular sips of water and regular mouth care. The following day she dies, with her husband and close friends at her bedside.

Go back

A person with unexpected deterioration

Question 1

SCENARIO INTRO

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.

Show Intro

Start Quiz

When would be the best time to consider the ReSPECT process for RM?

1 / 5

Now

Yes

OK, next

2 / 5

After transfer to the neurosurgical unit, when the prognosis will be clearer

Yes

OK, next

3 / 5

When (if) RM regains consciousness

Yes

OK, next

4 / 5

When (if) RM regains capacity

Yes

OK, next

5 / 5

Only if and when RM or his parents ask for it

Yes

OK, next

Go Back

A person with unexpected deterioration

Question 2

Who should be involved in the initial ReSPECT conversation for RM

1 / 5

The ICU consultant

Yes

The ICU consultant has already met the parents, so is well-placed to lead the conversation.

OK, next

2 / 5

An ICU nurse

Yes

Having a second health professional, such as a nurse, can help to provide support.

OK, next

3 / 5

RM’s parents

Yes

In this context RM’s parents must be involved in the conversation

OK, next

4 / 5

The local transplant coordinator

Yes

OK, next

5 / 5

RM’s GP

Yes

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.

OK, next

Go Back

A person with unexpected deterioration

Question 3

What preparation is needed before the conversation?

1 / 4

The ICU consultant reads all the information on the ReSPECT website

Yes

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.

OK, next

2 / 4

The parents read the information leaflet

Yes

OK, next

3 / 4

The ICU consultant and nurse discuss RM’s condition

Yes

OK, next

4 / 4

Section 2 of the form is completed

Yes

OK, next

Go Back

A person with unexpected deterioration

Question 4

SCENARIO INTRO

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.

Show Intro

Continue

Which of the following should form part of the ReSPECT process and ReSPECT form for RM?

1 / 5

Decisions about the content of his form should be made in his best interests

Yes

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.

OK, next

2 / 5

His parents should be asked to decide whether he should receive CPR

Yes

OK, next

3 / 5

A detailed assessment of RM’s capacity should be documented in his health records

Yes

OK, next

4 / 5

His parents should be told that, as he is an adult, they have no say in his treatment

Yes

OK, next

5 / 5

His parents are told that the form is legally binding

Yes

OK, next

Go Back

A person with unexpected deterioration

Question 5

SCENARIO INTRO

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.

Show Intro

Continue

What should the neurosurgical team do about the ReSPECT form?

1 / 4

Cancel it as he is no longer at high risk of death or cardiac arrest

Yes

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.

OK, next

2 / 4

Ask his parents if they still want him to have it?

Yes

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.

OK, next

3 / 4

Explain it to RM and give him the chance to have a new form based on his personal preferences.

Yes

OK, next

4 / 4

Leave it in place unchanged, as he is getting better and should still be for full and active treatment

Yes

OK, next

Go Back

Scenario Complete

The neurosurgical registrar has a ReSPECT conversation with RM and confirms that he wants to be considered for all active treatment in the event of a sudden deterioration, and therefore that the current form remains valid. RM mentions that he would want to be an organ donor if he had a catastrophic illness with no chance of recovery. The registrar therefore amends the form to include this in section 2. Following rehabilitation over several weeks, he continues to improve and arrangements are made for RM to return home, with support from occupational therapists, physiotherapists, and social workers. He is given his ReSPECT form to take home.

Go back

De-Brief

INTRODUCTION

Introduction

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.

Delete

The form below will help you facilitate the de-brief.

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Preparation

INTRODUCTION

Introduction

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…

Delete

Conversation reference

You may want to develop your own referencing system to identify saved conversations

Important considerations

When is best to have the conversation?

Where are you going to have the conversation?

How are you going to document and share the decisions?

Important people

Is there any information you can gather about the person in advance?

Who are you having the conversation with?

Who else should be in the room?

Who should lead the conversation?

Important questions

What is the purpose of the conversation?

How much information they want to receive?

What do they know already?

What are the possible wishes and priorites of the person?

What is the current and possible future clinical situation(s) and treatment(s)?

What would be a good outcome from the conversation?

Checklist for when in the conversation

This checklist may help you when in the conversation and will be added to the end of your saved preparation

Explain the purpose of the conversation

Establish how much information the person wants to receive

Establish what they know already

Establish where possible the priorities and wishes of the person

Explain the current and possible future clinical situation(s) and treatment(s) Summarise the conversation

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Welcome

MODULES

What is ReSPECT?

Approx 12 mins

Who is ReSPECT for?

Approx 4 mins

Having a conversation about ReSPECT

Approx 10 mins

How to check if the ReSPECT form has been filled in correctly

Completing the form (The practical stuff)

Approx 10 mins

How to care for someone with a ReSPECT form

Approx 10 mins

PRACTICAL TOOLS

Quiz me – Profiles

Quiz me – Whole Scenarios

Preparation Tool

De–Brief Tool

FAQs

What is ?

INTRODUCTION

Introduction

What is ReSPECT?

FURTHER READING

Professional insight

What recommendations can be included on the form?

How ReSPECT fits in with existing documents

Practicalities of the form

Why was the ReSPECT process created?

Law and ethics

A person with unexpected deterioration

SCENARIO INTRO

1 / 5

2 / 5

3 / 5

4 / 5

5 / 5

A person having an intervention

SCENARIO INTRO

1 / 5

2 / 5

3 / 5

4 / 5

5 / 5

Scenario Complete

Who is for?

Who is ReSPECT for?

FURTHER READING

A person with an advanced terminal illness

SCENARIO INTRO

1 / 6

2 / 6

3 / 6

4 / 6

5 / 6

6 / 6

Scenario Complete

Having a conversation about

INTRODUCTION

Introduction

Before you have the conversation think about

Before you have the conversation think about

People

Who should lead the conversation?

Who are you having the conversation with?

Which other team members should be there?

Timing

When is best to have the conversation?

Setting

Where to have the conversation

Information gathering

Gathering information

During the conversation

During the conversation

Explain the purpose of the conversation

Establish how much information the person wants to receive

Establish what they know already