ReSPECT Information for patients and carers

The wording from this page has been taken from the leaflet produced by the national team. For more information, visit: www.respectprocess.org.uk.


 
Introduction
In a crisis, health professionals may have to make rapid decisions about your treatment, and you may not be well enough to participate in making choices.
 
The ReSPECT process empowers you to guide the health professionals on what treatments you would or would not want to be considered for. It can also record the things that are most important to you and that should be prioritised, as well as treatments that would not work for you.
 
Many life-sustaining treatments involve risks of causing harm, discomfort and loss of dignity, or the risk of dying in hospital when you may have wanted to be at home. Many people choose not to take those risks if the likelihood of benefit from treatment is small. The ReSPECT form can record preferences and recommendations for emergency situations, whatever stage of life you are at.
 
What is ReSPECT?
 
ReSPECT is a process where you and your healthcare team talk together and work out a personalised plan for potential future emergency treatment - to ensure that you receive the best possible treatment for your individual situation.
 
It is important the doctors and nurses know how you, as the patient, want to be treated - so that they can respect your wishes.
 
The healthcare team have the medical knowledge of what different emergency treatments might be helpful to you — but it is very useful to know your wishes and viewpoints on these emergency treatments in advance. This is particularly important in a future crisis situation where you may be too unwell to express your opinion.
 
After talking this through with you, the doctor or nurse will complete a form summarising your ReSPECT plan. The form also contains an area to note down any other important planning documents you have (such as an Advance Decision to Refuse Treatment, also known as Living Will) and there is also space to document who should be contacted in an emergency.
The ReSPECT form is kept at home with you – so that you or your carer can show it to health professionals in an emergency.
 
It is very important to bring your ReSPECT form with you if you come into hospital.
 
The ReSPECT form is kept in the medical notes during any hospital stay, but it is then given back to you on discharge.

Who makes the decisions?
Your views are crucial. The health professionals will make every effort to come to a joint agreed plan with you. However it is important to understand that the ReSPECT form cannot be used to demand treatments that are not likely to benefit you and would not be offered.
The recommendations in the ReSPECT plan are not legally binding, but they are a guide for the emergency healthcare team.
  
What sorts of treatments are covered?
The health professional will discuss a variety of treatment options with you and a summary of this will be documented on the form.
 
There is a special section to document decisions about cardiopulmonary resuscitation (CPR). CPR is an artificial life support treatment that can, in some circumstances, restart the heart or lungs. CPR is rarely successful in people with advanced complex health conditions and it does not work in people who are dying naturally. If CPR would cause more harm than benefit to you then this will be explained to you. Some patients decide themselves that they do not want this treatment.
 
What if the person lacks capacity to make decisions?
You may be the person caring for an individual who lacks capacity (lacks the ability to understand information and to use it to make informed choices). In this situation a ReSPECT plan can be made which is agreed to be in their best interests (for their overall benefit). This is not simply others deciding on their behalf, but a process of discussion with those who know the person best to ensure that the plan is as close to what the individual would have wanted as possible.
 
Can I see what’s written about me?
Yes. It’s important that you know the recommendations that are recorded and that you are comfortable with them. You are welcome to look over your ReSPECT form if it is being kept with your health records.
 
Where should I keep my form? 
Your ReSPECT form should be kept in a safe place at home where it is accessible in an emergency if you are unwell. Some people choose to keep it in an emergency folder by the door. It is very important to bring your ReSPECT form with you if you come into hospital.
  
Can my form be changed?
Yes. If your condition or circumstances change, or if you want to change your mind for any reason, then the ReSPECT plan can be changed.
 
What if I lose or damage my form? 
If you lose or damage your RESPECT form please contact a member of your healthcare team as soon as possible.
 
What does the form look like?
The form looks similar to the image below. It is A4 sized, with lilac borders. The front summarises key information and decisions. The reverse contains information about who has bene involved in the process and room to document some relevant contact details.