Appendix III: Patient Information Leaflet
This leaflet is about a treatment called cardiopulmonary resuscitation ( CPR). It tells you about decisions you may need to make or discuss with your healthcare team. It may also be useful for relatives, friends and carers. These conversations can be very difficult for all concerned but are so helpful in supporting people's wishes being respected.
The leaflet tells you:
- what CPR is, and
- how decisions about CPR are made
The leaflet may not answer all your questions. Please speak to your healthcare team about anything you don't understand.
What is CPR?
CPR is an emergency treatment that tries to restart your heart and breathing when they have stopped.
CPR may include:
- repeatedly pushing down firmly on your chest
- using a mask or a tube to help you breathe, and
- using electric shocks to try to restart your heart
Who will decide about CPR?
You and your healthcare team can discuss in advance if you would benefit from CPR. Your healthcare team will look at:
- your state of health
- your wishes
- whether CPR is likely to restart your heart and breathing, and for how long, and
- whether CPR will help you live longer in a way you can enjoy
If your healthcare team think CPR may work for you, they will want to know what you think. Your wishes are important in this decision.
If your healthcare team are sure CPR will not work, they can decide in advance that it should not be tried. They will write this on a form called 'Do Not Attempt Cardiopulmonary Resuscitation' (a DNACPR form). The form will be kept with your health records. A form will also be completed if a patient does not want CPR to be instigated.
You can find out what happens if you disagree with this decision in the section 'What if I want CPR, but my doctor says it will not work?' on page 6.
If your heart and breathing stop before you have had the opportunity to discuss CPR, the doctors looking after you will decide whether to try CPR. They will take account of things you have said, and how likely it is to succeed.
Is CPR likely to resuscitate me?
The chance of CPR resuscitating you will depend on:
- why your heart and breathing have stopped
- what illnesses or medical problems you have, or have had in the past, and
- your general health
Unfortunately, CPR often does not work. Your healthcare team can tell you more about this.
Does everyone get back to normal after CPR?
- Very few people make a full recovery
- People who are resuscitated will still be very unwell and need more treatment, usually in a coronary care or intensive care unit
- Most patients never get back the physical or mental health they had before they were resuscitated. Some have brain damage or go into a coma
- Patients with many medical problems are much less likely to make a full recovery
Is CPR tried on everyone whose heart and breathing stop?
- When the heart and breathing stop unexpectedly, for example if you have a serious injury or heart attack, the healthcare team will try CPR if they think there is a chance of recovery
- Your heart and breathing also stop as a natural part of dying. If you are seriously ill and near the end of your life, there may be no benefit in trying to resuscitate you when your heart and breathing stop. In these cases, trying to restart your heart and breathing may do more harm than good, by not allowing you to die naturally
What if I don't want to talk about CPR?
- You don't have to talk about CPR if you don't want to
- If you feel you are not ready to talk about it just yet, you can put off this discussion
- You may wish to talk to your family, close friends or carers. They may be able to help you make a decision you are happy with
- Although this may be difficult, you should discuss CPR with your healthcare team as soon as you feel able to do it. This is to make sure your healthcare team know your wishes. It is also helpful for your family if this discussion has taken place
Who makes the decisions if I cannot decide for myself any more?
If you cannot understand the information you are given, cannot make a decision or cannot tell other people your decision, someone else may be able to say what you would have wanted.
If you are an adult and are unable to make a
decision because of your illness or a learning disability, a
'legal proxy' would be able to represent your wishes and
interests in the decision-making
- A legal proxy can be:
- someone you appointed to be your welfare attorney before you became unable to make your own decisions, or
- someone a court has appointed to be your welfare guardian, or
- someone a court has appointed by an intervention order to make a one-off decision about your healthcare or treatment
The doctor will always talk through the decision with the legal proxy if this is possible.
- If you don't have a legal proxy, the doctors looking after you will decide if you would benefit from CPR and will talk through the decision with those close to you if this is possible and appropriate
- Your family and friends are not allowed to decide for you, unless they are your legal proxy. But it can be helpful for your healthcare team to talk to them about your wishes. If there are people you do (or do not) want to be asked about your care, you should let your healthcare team know
- When children under 16 are unable to decide for themselves, their parent or guardian can decide for them
The Office of the Public Guardian (Scotland) gives more information about legal proxies. See page 9 for how to contact the Office of the Public Guardian.
What should I do if I know that I don't want CPR?
- If you don't want anyone to try to resuscitate you, tell your healthcare team. They must follow your wishes
- Ask your GP to add this information to your Key Information Summary. This allows your GP practice to add an electronic alert onto your medical record which can be shared with other health professionals who may be involved in your care (such as the GP out of hours service, the Scottish Ambulance Service, the Emergency Department at the hospital)
- You should let people close to you know your wishes, so they can tell your healthcare team what you want if they are asked
- You can make an advance directive (this is sometimes called a 'living will') to put your wishes in writing. If you have an advance directive, you must make sure your healthcare team know about it and put a copy of it in your health records
- It is important to know that having a DNACPR form signed does not mean that you will not receive any other types of treatments: it simply means that you will not have CPR. Other treatments may be provided according to individual need
What if I want CPR, but my doctor says it will not work?
- When you discuss CPR with your healthcare team, your doctor may tell you that CPR would not work for you
- No doctor will refuse your wish for CPR if there is a fair chance of success
- If your healthcare team is not sure CPR will work for you, they can arrange a second medical opinion if you would like one
- If CPR might restart your heart and breathing, but is likely to leave you severely ill or disabled, your opinion about whether these chances are worth taking is very important. Your healthcare team must listen to your opinions and to anybody you want involved in the discussion
- But you cannot demand treatment that will not work
If you are unhappy about the discussions you have had with your healthcare team, speak to a member of NHS staff involved in your care, if you can. If you are still unhappy and you would like to make a complaint the leaflet 'Making a complaint about the NHS' explains what to do. See page 10 for where to get a copy.
What happens when a decision not to give CPR has been made?
If you have decided you do not wish CPR to be given, or if your doctor is sure CPR will not work, this will be written on a form called 'Do Not Attempt Cardiopulmonary Resuscitation' (a DNACPR form). This will be kept with your health records and for some patients will be kept in their own home
This decision is about CPR only. You will get any other treatment you need.
Your healthcare team will continue to give you the best possible care.
What if I am at home or about to be sent home?
Many patients who are dying want to know they will be able to die at home. Even if people close to you know that you do not wish CPR to be tried, they may call an ambulance in an emergency.
If the ambulance crew know you have a DNACPR form at home, they will make you comfortable but will not try CPR.
To make sure the ambulance crew know your wishes, you should:
- tell members of your healthcare team where you keep your DNACPR form, and
- tell people close to you where you keep the form
What if my situation changes?
Your healthcare team will review decisions about CPR on an individual basis. They will also do this if your condition changes or if you change your mind about your decision.
Can I see what is written about me?
Yes, you can see what's written about you. Your healthcare team will note what you say about CPR, and any decisions that are made, in your health records.
You have a legal right to see and have copies of your records, if you wish. Your healthcare team should explain any words you don't understand.
Who else can I talk to about this?
You can talk to:
- any member of staff involved in your care
- your family or friends
- your carer
- patient support organisations - for example, Macmillan Cancer Support or Age Concern
- the hospital chaplain
- your own spiritual adviser, or
- independent advocacy services - an advocacy service can help you express your views or make your own decisions, or can speak on your behalf
How can I find out more?
For more information about anything in this leaflet, contact:
- a member of NHS staff involved in your care
- the NHS inform helpline on 0800 22 44 88
- your local citizens advice bureau
For more information about advocacy and to find a local advocacy group, contact:
Scottish Independent Advocacy Alliance
69a George Street, Edinburgh EH2 2JG
Phone 0131 260 5380
For more information about legal proxies, contact:
The Office of the Public Guardian (Scotland)
Hadrian House, Callendar Business Park
Callendar Road, Falkirk FK1 1XR
Phone 01324 678 300
For more information about raising a concern or making a complaint, you can get a copy of the leaflet: Your health, your rights: Feedback and Complaints from:
- GP surgeries, hospitals and other places where you receive NHS services
- www.nhsinform.co.uk/rights (alternative formats are also available here)
- the NHS inform Helpline on 0800 22 44 88
- your local citizens advice bureau
This information was developed with Health Rights Information Scotland.
This document has been produced by the Scottish Government Health Directorates in consultation with relevant stakeholders. It is available on the Scottish Government website ( http://www.gov.scot/Topics/Health/Quality-Improvement-Performance/peolc/DNACPR). You can also ask someone in your healthcare team for a copy.
Email: Elizabeth Gourlay, firstname.lastname@example.org