Who is the leaflet for? What is its aim?
You either have, or are about to have, an ICD implanted into you. An ICD is designed to deliver a shock to treat a life threatening heart rhythm, however there may come a point in your life when you would prefer not to receive a shock. This may be if your heart condition has deteriorated or you have another medical condition which cannot be cured. It is at this point that you may decide that ICD deactivation is the preferable course of action for you. This leaflet is designed to help you when considering this option.
What are the advantages of having the ICD deactivated?
When it is deactivated, the ICD will no longer give shocks for heart rhythm disturbances. You may want it to be deactivated if receiving shocks has become unlikely to prolong your life due to a change in your medical condition and may cause distress for you and your family. This may be the case if you have been diagnosed with a terminal condition and are thought to be reaching the end of your life, or if your heart condition reaches a stage where it is no longer possible to maintain a good quality of life or to prevent rhythm disturbances that cause frequent shocks.
What are the disadvantages of having the ICD deactivated?
Should you go into a life-threatening heart rhythm disturbance, the device will not give you a shock to stop this dangerous rhythm. If this heart rhythm disturbance continues it will cause you to become unconscious and possibly die.
What is involved in ICD deactivation?
The process is carried out by a cardiac physiologist and is similar to when you have an ICD check. A small programming device is placed over your ICD and the settings are altered on a computer. The ICD can be deactivated so it will no longer deliver a shock but the pacing function is left unchanged.
Who is involved in making the decision?
Primarily, this would be you, which is why we aim to raise the issue well before an urgent decision is needed. It is important that you are aware of this option early on so you have time to consider how you feel about deactivation and can play an active part in the decision making process. This ensures that the people involved in your care know and understand your wishes.
If you have not expressed your wishes and are not able to do so, a discussion will take place between your next of kin and the doctors involved in your care. The decision may then be made to deactivate your ICD.
Can I change my mind?
Yes. Should you change your mind, it is important to discuss the decision with the doctor who is overseeing your care at the time of the decision to deactivate the ICD. The ICD can be re-activated by a cardiac physiologist in much the same way as it was deactivated.
Where can I get further information?
Further information can be sought from the doctor who is overseeing your care at the time of the decision to deactivate the ICD. The doctor may decide it is appropriate for you to speak to a specialist in cardiology such as a cardiology consultant, a cardiac physiologist or a specialist cardiac nurse.
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Smoking is not allowed anywhere on the hospital campus. For advice and support in quitting, contact your GP or the free NHS stop smoking helpline on 0800 169 0 169.
Help accessing this information in other formats is available. To find out more about the services we provide, please visit our patient information help page (see link below) or telephone 01223 256998. www.cuh.nhs.uk/contact-us/accessible-information/
Cambridge University Hospitals
NHS Foundation Trust
Hills Road, Cambridge
Telephone +44 (0)1223 245151