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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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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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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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That's an interesting question. My father had a pacemaker, but we never even thought of considering disconnecting the lead(s). In retrospect, I don't think I would have asked that, b/c it was hard enough for him to breathe as he declined and his vital organs were shutting down. I think the respiratory issue was significant enough, and causing obvious distress, that turning off the pacer might have aggravated his discomfort.

Has your mother's cancer metastasized?
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No, it hasn't. Ironically the breast cancer is probably the least of her problems. It's hormone fed and very slow growing.

I'm not sure she would be uncomfortable if the pacemaker was deactivated. She wasn't uncomfortable before she got it, just tired.
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I read a book called 'Knocking On Heavens Door" which was all about this.
I recall that the doctors gave teh wife a hard time
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I read her NY Times article and it was very good. I may see if our library has the book. Thank you.
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My aunt, 81, has late stage Parkinson’s and dementia. She is on hospice. She recently had her pacemaker replaced as her cardiologist advised her family that her death would be very unpleasant if they allowed the pacemaker to just stop. In my aunts case her heart would stop without the pacemaker.
Check with your mom’s cardiologist.
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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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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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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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Yes. I had my fathers pacemaker turned off while in the hospital. It was easy to do and it gave me peace knowing he wouldn’t be shocked while in such s fragile state .
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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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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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I have never seen a pacemaker turned off. Usually it is not going to keep someone alive if they have stopped eating and drinking. Some people have an automatic implantable defibrillator. Those are turned off because they will try to shock the dying heart.
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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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Sorry, one other thought.

If this pacemaker has been in place for eight years...

The batteries do run out, and not get replaced, and then you don't need to do anything. Do you happen to know when it was last checked over?
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When my husband was dying in the hospital and had a DNR, they turned it off then
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I have wondered about this as well. There are different kinds of Pacemakers. My mother has one that kicks in when her pulse gets low. But it does not have a defibrillator- Still, you have to wonder if that is prolonging the dying process. Ask your cardiiologist and let us know!!!
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Hospice usually has a protocol for their patients with pacemakers and/or implanted defibrillators.
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Yes, my father requested his defibrillator be turned off when he was placed on hospice care. He got afraid of what would happen to him if it ever went off. The doctor explained in great details what his body would do if it went off. The doctor's description was horrific as he explained the convulsions and pain that would cause him. When he died last year it had nothing to do with the device.
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I'm interested to know what you find out, and what you decide to do. This is an interesting question!
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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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Definitely depends on the type of pacemaker. A pacemaker will not keep a person alive - my mother had one that had only been in place for a year and collapsed when her heart stopped - and was put on life support briefly until family could get there to say goodbye - but it wasn't the pacemaker keeping her heart going, it was the life support equipment. All the pacemaker does is keep the heart in a certain rhythm - it doesn't keep it beating. Mom had A-Fib, so the pacemaker kept her heart from going out of rhythm. Without the pacemaker, she could hit 150+ bpm while sitting still - and she was completely unaware of it - never broke a sweat, felt funny or had any chest pain - so she'd never tell me if it was a problem, because she claimed not to be aware of it.

An implanted defibrillator is a different situation.
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Dear MSweeny...My mother had dementia, congestive heart failure and copd and had an active do not resuscitate document. When she expressed that she did not wish to live in assisted living the way she knew she had to we discussed turning off her pacemaker. My mother lived in Wisconsin and I live in California so was her POA but could not move her to California. Even though I had a POA the doctor wanted my Mother's permission which was fine so not sure how this works state by state but I would think a do not resuscitate document would be of help with your POA. It is a sad step but I believe a kind one So nature can take its course and may that be as gentle as possible for you Mom and you and your family. Kind wishes and strength.
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MSweeney: Your mother must be terribly frightened and in pain. Why even consider anything that would prolong this condition?
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Does having a defibulator/pacemaker prolong life. I understand the pacemaker answers, but how about the defibulator?
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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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Thanks to all of your replies I have a list of questions to ask her pacemaker Dr when we see him later this week.

She does not have the defibrillator, that much I do know. When she got the pacemaker it was for a very slow heartbeat, it wasn’t bothering her, it was simply slowing down. In fact she had no symptoms, crazy, I know, but it was noticed at a routine checkup. So my thinking is that without it her heart would simply slow again. As it is all she wants to do is sleep now.

What’s so hard about the dementia is she simply doesn’t enjoy anything she used to. I took her out the other day as it was beautiful weather and I thought we’d get an ice cream. She just sat with her head hung, eyes closed, didn’t even care. It’s so sad, it’s not my mother.
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Sweeney, that doesn't sound like dementia. It sounds like depression. Is mom being treated for that?
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Late stage dementia can look exactly like that - head hung, eyes closed - like a vegetative state. Doctors, unfortunately, have a financial interest in keeping their patients alive. As long as the patient is alive - regardless of quality of life - the doctor can keep on treating and keep on billing. You are doing the right thing by asking about the pacemaker and I urge you to stay strong if the doctor does not support your mother's wishes for her life to not be prolonged. Peace.
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