Has anyone requested a pacemaker be turned off?

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A little background: my mom had a pacemaker put in about 8years ago (she’s 86). It was a good decision, she was healthy, active, it gave her several good years. Fast forward to today, she has dementia (worsening quickly...usually thinks I’m her mother), she’s blind, has breast cancer, COPD, can barely walk, incontinent, and suffers from anxiety. I am her health care proxy and her POA as well as full time caregiver. I feel as though if the pacemaker wasn’t there her heart just would have slowed down and eventually stopped. Nature taking its course. On her health care proxy she had specified that if she was not going to recover from her illnesses she did not want to be kept going by any artificial means. Although it doesn’t specifically mention a pacemaker couldn’t it include this? Has anyone ever requested a pacemaker be deactivated? What kind of response did you get from the doctors? Any experiences or advice would be greatly appreciated. Thanks.

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Thanks for your reply and I'm sorry for your loss.

My mom really has no quality of life and I know that if she had her faculties she would not want to go on like this. It's breaking my heart.
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Reply to MSweeney
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Ditto to all the advice about checking with your cardiologist first. I had those same questions, it was a bit confusing to understand how someone could still die naturally with a pacing device.

Dad had a combo pacemaker and defibrillator. His cardiologist advised against deactivating the pacing part, he said that just makes people feel worse physically. He strongly recommended we think about deactivating the defibrillator, he said it would make a difference between a very painful death and a peaceful death. We turned off the defibrillator part so that he would not get repeated shocks if his heart stopped. Dad’s heart stopped on its own, he still had the pacing part of his device active.

Debbie1955
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How much battery life does the pacemaker have? When it’s interrogated how much more life does it project that it has and what’s the percentage of time she’s using it? Perhaps if it’s getting close to end of battery life it could be that it’s not replaced. This is something we may be looking at with my dad
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Reply to Daughterof1930
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When my mother had her pacemaker put in 3 years ago at age 82 she had a DNR in effect and even ask the MD is she should have the pacemaker. They just told her she would never get out of bed if she didn't have it. In her mind she thought they meant years of laying in bed with no relief in sight. They put in the pacemaker. At her one week check up she ask if her quality of life should get worse, she was in early stage alzheimers, could she have device turned off. They said no and that it would not prolong her life. I didn't really understand how they can say that since they had told me without it her heart would slow down and stop. I think they just didn't want to face the reality that someone would chose not to be treated and go naturally rather than prolong life with a known disease process like alzheimers. Now she is moving into the later stages of disease and we have no choice. Her only symptoms were that she would just fall asleep and be hard to rouse. I can't think of a more peaceful way to go than to just fall asleep. Now she is frightened and confused and feeling lost and doesn't know anyone. Pardon me but I think I'd rather fall asleep and not wake up than live in the life that she is in now.
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Reply to Nancynurse
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When my mom, who had dementia and CHF got a pacemaker, we asked specifically if we would be able to have it deactivated if it appeared to be what was extending her life past a time when she had any quality of life. We were told that deactivating was not an issue.

As it happened , mom died of respiratory failure, so in the end, we did not have to do anything about the pacemaker.
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Reply to BarbBrooklyn
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It may vary by the reasons for the pacemaker, but we were told that the pacemaker did not extend life, but it made life more comfortable by ensuring a regular pace. My husband had both a pacemaker and a defibrillator. A defibrillator's purpose is definitely to extend life. My husband insisted on having his defibrillator removed when he developed dementia. He wanted no life-extending procedures. He was OK with continuing with the pacemaker. So the next time the pacemaker needed a battery replacement the heart surgeon removed the defibrillator. He said he wouldn't open hubby up just to shut off the defibrillator but since opening was necessary anyway, he would do it then.

I think the primary questions should be whether the pacemaker is actually prolonging life in this case.
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Reply to jeannegibbs
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Thanks for your responses. She actually has a pacemaker check next week and that was why I started thinking about it. I definitely have some questions for him.
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Reply to MSweeney
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Judy at the extreme end of life it isn't "only" that the defibrillator prolongs life - without wanting to get too graphic about it, the defib. keeps kicking in even when every other organ in the body is failing. Nobody would want this happening to any patient.
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Reply to Countrymouse
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The day my father passed, they still refused to turn off his pacemaker.

Generally, the cardiologist will not turn it off until the very end. My mother passed on in the hospital recovery room but the nurse didn't/couldn't turn off the pacemaker and Mom breathed deeply 3 times after passing before I asked if it was the pacemaker. Then the nurse turned it off.

The pacemaker is not considered artificial respiration. The pacemaker doesn't keep the person alive, it only keeps the pace for the heart. Your mother will pass when her time comes, with or without the pacemaker. I would think you should leave it alone as without the pacemaker she could wind up having some awful chest pains and severe heart attacks.

Again, there is no way a pacemaker prolongs life - it only keeps pace for the heart.
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Reply to RayLinStephens
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MSweeney, you do want to check what type of pacemaker this is, exactly. Some are combined with a defibrillator, and if that applies in your mother's case then you definitely need to ask her doctors to address the issue without delay.

I didn't ever have to have this difficult conversation with anyone, as things turned out; but if I had the first person I would have turned to would have been the cardiac physiologist who did my mother's routine monitoring and adjustment sessions. These people know all there is to know about the specific points you need to know; and because they're not doctors - responsible for the whole patient, if you see what I mean - they're very good at picking out and explaining the technical aspects dispassionately.

It may be, if your mother's pacemaker is a standard model with no bells or whistles, that it won't have any noticeable effect on her end-of-life process; I just don't know enough to say. But get advice simply to see if this is something that needs to be addressed or that you can safely let be.
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