How Do I Handle Death and Dying Issues with My ICD and Pacemaker?
By Garrett Snipes, MD, Jonathan Z. Rosman, MD, and Samuel F. Sears, Ph.D.
Modern medicine has succeeded at developing cardiac devices, such as pacemakers and implantable cardiac defibrillators (ICDs) that improve quality of life and prevent dying prematurely in at-risk persons. There are times, such as at the end of life, when patients and families may no longer desire this therapy and wish to have their cardiac devices turned off.
The Heart Rhythm Society has provided a document, excerpted below, to provide you with some information about the pros and cons of leaving your cardiac device working fully if you have been informed by your doctor that you, or your loved one, are nearing the end of life. The value of addressing this issue is to seek a more peaceful death for you or your family member.
When would I want to turn off my ICD or pacemaker?
ICDs and pacemakers have helped people live longer. Instead of dying from heart rhythm problems, these patients are now dying from other life threatening illnesses such as cancer, lung disease and heart failure. Heart failure is a condition in which the heart muscle becomes weak and the heart is no longer able to pump blood well. This is the most common reason to get an ICD. While the ICD will prevent you from dying before your time from a dangerously fast heart rhythm, it will not stop you from dying from heart failure. Patients may reach a point in their lives when their goal of care is to be comfortable during their remaining time. The ICD is programmed to prevent death and will consistently attempt to correct the rhythms leading to death using shocks. Studies have shown that about 1 in 5 people with an ICD experience painful shocks which they find troublesome in the last weeks of their lives. Terminally ill patients often have discussions with their primary care doctors regarding end of life issues. By taking some steps outlined below, you can increase the chances of a more peaceful death.
What are my options to turning off an ICD?
Understanding the limits of care in these situations, some people decide that they would like to have the ICD turned off in order to avoid painful shocks. This usually happens as they reach what their doctors consider to be the end of their lives (within months). It is important to understand a few aspects about this:
- Although every ICD has a built-in pacemaker, the shocking action of the ICD can be turned off without turning off the pacemaker function.
- Turning off the ICD will not cause your death.
- Turning off the ICD will not be painful, nor will a patient’s death be more painful if it is turned off.
- Turning off the ICD will mean that the device will not prevent sudden death in the event of a dangerous rapid heart rhythm.
- It is not legally or morally wrong to stop any medical treatment if it no longer serves you or your loved ones’ purposes. Turning off an ICD is not suicide or killing someone. It simply means that when the symptoms of heart failure or other terminal illnesses cannot be managed any longer, you will allow nature to take its course, rather than trying to stay alive by being repeatedly shocked by the ICD.
- Although it is legal for physicians to turn off devices, some physicians may be reluctant or simply refuse to do so, on the basis of their personal beliefs. If that is the case, and turning off the ICD is what you desire, you may request a referral to another physician who will comply with this request.
What are my options in turning off a cardiac pacemaker?
While turning off a pacemaker is certainly something that can be done, it is generally not something that needs to be done. Unlike an ICD, turning off a pacemaker can frequently make you or your loved one feel considerably worse by reducing the blood supply to the body. Even if the goal is to avoid unwanted prolongation of life, turning off the pacemaker may not accomplish that either. One exception to this advice might be if you or your loved one are in a continuing state of reduced consciousness or in the dying process, and the pacemaker is felt to be the main treatment sustaining life. In that case, consideration of turning off the pacemaker may be in line with your overall wishes. It is very important to discuss with your doctor whether turning off a pacemaker is really going to align with your health care needs.
How will I or my loved one be able to die if the pacemaker will keep the heart going?
This is a common misunderstanding. A pacemaker does not actually beat for the heart, but delivers energy to stimulate the heart muscle to beat. Once someone stops breathing, their body can no longer get oxygen and the heart muscle will die and stop beating, even with a pacemaker. Therefore, a patient will die without turning off their pacemaker.
What are the Key Considerations for Me and My Family about Death and Dying with a Cardiac Device?
- Has your doctor indicated that you are not likely to live more than 6 months in your current condition?
- Has your quality of life changed in a way that you no longer need or want the ongoing capability of the ICD to deliver a shock in the event of an irregular heart rhythm?
- Have you or your family expressed fear or distress over the type of care that you would receive at the end of life?
- Have you reached a point in the course of your life where dying suddenly from a lethal heart rhythm would be as good a way for your life to end as any other?
- If you are in the dying process, would it be better to avoid the risk of being shocked repeatedly without a meaningful or long-term prolongation of your life?
If you answered “yes” to any of these questions, it is reasonable for you to talk with your health care providers about making adjustments to your care plan to respect your wishes.
Download the full version of End of Life and Heart Rhythm Devices (PDF, 904K)
