End of Life and Heart Rhythm Devices

End of Life and Heart Rhythm devices

How do I handle death and dying issues with my implantable cardioverter defibrillator (ICD) or cardiac pacemaker? Revised by HRS Patient and Caregivers Working Group – Original authors were Garrett Snipes, MD, Jonathan Rosman, MD & Samuel Sears, PhD

Implantable cardiac defibrillators family member. It is often easier (ICDs) and pacemakers improve to have thought about the issue in quality of life and may prevent advance, so that when the time premature death for people with comes, patients know it is an certain irregular heart rhythms. option, and families know the There are times, such as when life wishes of their loved ones. is nearing its end, when patients How do ICDs and pacemakers may no longer desire these heart work? therapies. Patients and families may wish to have their cardiac The pattern of heartbeats is known devices turned off. as the heart rhythm. ICDs and pacemakers are medical devices pump blood and can cause “sud - The purpose of this document is to that treat irregular heart rhythms den death”. ICDs have the ability provide you with some information (also known as arrhythmias). to check the heart rhythm, detect about the pros and cons of turning ICDs and pacemakers consist these dangerous heart rhythms, off your ICD or pacemaker if you of a battery connected to wires, and deliver a shock to stop them. have been informed by your doctor which are threaded through blood Although some people who have that you, or your loved one, have a vessels and attached to the heart. terminal illness or are nearing the an ICD never experience a shock, end of life. The value of thinking ICDs are used to treat dangerously patients who are shocked com - about this issue is to seek a more fast heart rhythms. This type of monly describe the sensation as peaceful death for you or your arrhythmia can cause a severe a painful “kick in the chest” or decrease in the heart’s ability to spasm of the body. While these

did you The Heart Rhythm Society and the American College of Cardiology Foundation collaboratively created the NCDR ICD Registry™, a nationwide quality program that helps participating hospitals measure and know improve care for patients receiving implantable cardioverter defibrillators (ICDs). shocks are lifesaving, they can illnesses such as cancer, lung dis - rhythms using shocks. Unlike a cause physical and emotional pain ease, or heart failure. Heart failure pacemaker which causes no pain, to a patient and his loved ones. is a condition in which the heart an ICD may cause significant pain muscle becomes weak, and the when it shocks the heart back to a Pacemakers are used to treat slow heart is no longer able to pump normal rhythm. Studies have heart rhythms. Slow heart rhythms blood well. This is the most com - shown that about 1 in 5 people can make it difficult to lead an ac - mon reason to get an ICD. While with an ICD experience painful tive life. By using a small amount the ICD will prevent you from dying shocks, which they or their family of energy, pacemakers stimulate from a dangerously fast heart find troublesome in the last weeks the heart to beat at a normal rate. rhythm, it will not stop you from of their lives. It is for this reason They improve quality of life and dying from your terminal illness, that patients nearing the end of may increase longevity as well. For including heart failure. their lives may request that their some patients, pacing both ventri - ICD be turned off. It is important to cles can also decrease symptoms Why would I want to turn off my understand some facts about turn - of heart failure, such as shortness ICD or pacemaker? ing off your ICD: of breath. Pacing both ventricles is Patients may reach a point in their called “cardiac resynchronization lives when their goal of care is to be • Although every ICD has a built-in therapy or biventricular pacing”. comfortable during their remaining pacemaker, the shocking action time. Terminally ill patients often of the ICD can be turned off and have discussions with their primary pacemaker function can remain care doctors regarding end of life on. issues. Sometimes, this discussion • “Biventricular pacing”, a treat - simply results in changing your care ment to improve heart failure plan to “allow nature to take its symptoms, can be left on even if course.” Managing your ICD and/or the shocking action is turned off. pacemaker during these times is im - portant to ensure you don’t receive • Turning off the ICD will not cause treatment that is not in accordance immediate death. with your wishes. It is also important that your family know your wishes • Turning off the ICD will not be so they know what you would want painful, nor will a patient’s death if you reach a point that you cannot be more painful if it is turned off. make decisions for yourself. • Turning off the ICD will mean that When would I consider turning the device will not prevent sudden ICDs and pacemakers have helped off my ICD? death in the event of a danger - ously rapid heart rhythm. people live longer. Instead of dying The ICD is programmed to prevent from heart rhythm problems , these death from dangerously fast heart • It is not legally or morally wrong patients are now dying from other rhythms and will correct these to stop any medical treatment if it no longer serves you or your goes along with your health care loved ones’ purposes. Turning off goals and how your daily quality of You Should Know an ICD is not suicide or killing life could be affected. Turning off an ICD is not difficult or someone. It simply means that time consuming. It is not a surgical Will the pacemaker keep my when the symptoms of heart fail - operation and does not cause any heart beating forever? ure or other terminal illnesses can discomfort. The ICD is turned off no longer be managed, you will This is a common misunderstand - using the same programmer that allow nature to take its course. ing. A pacemaker does not actually your doctors use to talk to your ICD. beat for the heart, but delivers en - Your cardiologist or electrophysiol - • Although it is legal for physicians ergy to stimulate the heart muscle ogist may do this themselves. to turn off devices, some physi - to beat. Once someone stops Sometimes your doctor may request cians may be reluctant or simply breathing, his body can no longer that a clinic nurse or representative refuse to do so, on the basis of get oxygen and the heart muscle from the device company perform their personal beliefs. If that is the will die and stop beating, even this function. case, and turning off the ICD is with a pacemaker. Therefore, the what you desire, you may request pacemaker will not prevent death a referral to another physician and a patient will die from his your heart but keep the pacing who will comply with this request. terminal illness without turning function on. In this case, if you off the pacemaker. have a life-threatening arrhythmia, When would I consider turning your heart will not be shocked off my cardiac pacemaker? What are the key facts for me back to a normal rhythm. The con - Turning off a pacemaker is also and my family about death and tinued pacing of the ICD should possible, although the issues are dying with a cardiac device? help your blood flow to your body, somewhat different than turning off You as the patient or the health which may positively affect how an ICD, as a pacemaker does not care proxy have the right to decide you feel. If you decide to turn off cause pain and may actually make whether to stop treatment with an the pacing function, your health the patient more comfortable. ICD or pacemaker. Every person and quality of life may be affected When a pacemaker is turned off, and situation is different. Your by a slow heart rhythm. the blood supply to the body is re - electrophysiologist and primary duced, which can make a patient care physician who have treated You can request that an ICD be feel considerably worse. Even if you or your loved one should know deactivated at any time. However, the goal is to avoid unwanted pro - your situation well, answer any there are certain times when many longation of life, turning off a pace - questions you have, and help you patients begin to seriously consider maker may not accomplish this. In in your decision-making. this option: addition, the consequences of • Has your doctor indicated that turning off a pacemaker are differ - There is a difference between you are not likely to live more ent for each person. It is very im - stopping an ICD’s shock and pac - than 6 months in your current portant to discuss with your doctor ing functions. You have the option condition? whether turning off a pacemaker to turn off the ICD’s ability to shock • Has your quality of life changed in a way that you no longer need or want the ICD to deliver a shock in the event of a dangerously fast heart rhythm?

• Have you or your family ex - pressed fear or distress over the type of care that you would receive at the end of life?

• Have you reached a point in your life where dying suddenly Summary and Conclusions mation, and feel free to ask your from a lethal heart rhythm Achieving a more peaceful death medical providers any additional would be as good a way for is a valuable goal for you, your questions that you might have. your life to end as any other? family, and your health care team. One way to remember the important The question of whether to have steps involved in any significant • If you are in the dying process, your (or your loved one’s) ICD or medical decision is the following would it be better to avoid the pacemaker turned off is not a sim - memory device: risk of being shocked repeat - ple one. The answer depends on edly without significantly whether or not having the ICD or Notify your loved ones of your prolonging your life? pacemaker turned off meet your wishes and document them If you answered “yes” to any of needs (or your loved one’s wishes, Educate yourself about treatment these questions, it is reasonable if you are the health care proxy). options for you to talk with your health Your medical providers want to help Evaluate all of your treatment care providers about making you make the decision that suits you options changes to your care plan to or your loved one best. Whatever respect your wishes. You should you decide, they will do everything Discuss your preferences and always feel free to talk to your possible to keep you or your loved consider palliative care doctors about your health goals one feeling as comfortable as possi - and any concerns or questions ble, and protect you or them from Seek mental and spiritual health you have about your ICD. suffering. Please consider this infor - care to aid you in this difficult time .