Has anyone requested a pacemaker be turned off?

From Scienceillustrated.com (the link given above)
...the heart can easily stop beating in spite of the pacemaker still emitting electrical impulses. And if the heart tires over the years and no longer has the power to contract, or if a coronary thrombosis (blood clot) occurs, the pacemaker is of no help.

I guess this is a touchy subject.
In my opinion, an artificial device implanted in a body, is a foreign object ("artificial means"). Implanting it gives the person more years to live. Turning it off or taking it out can change the heart functioning, possibly causing a cardiac change that could end in death.

The difficult part is some people would think you'd be playing God by turning it off. The same thing if you removed a feeding tube, stopped life saving medication or turned off a ventilator. Some would think she's "not bad enough" for intervention yet.

I don't believe that it's humane to keep a suffering person alive artificially, if there is no chance of recovery. You believe she is suffering and has no quality of life.
I don't believe that you want to be rid of your mom and the constraints of her diseases. It sounds like you are trying to comply with your mother's wishes. This is a personal issue, with no right or wrong answers.

I doubt you'd find many cardiologists that would turn off a pacer. I'm sure they're worried about being sued when the patient dies and the family member that wanted it off has changed their mind.

I'm sorry your mom may have to go into a NH. I had to place my mother also because I was no longer able to lift and reposition her. Life doesn't always go the way we plan it.

Why do you think that your Mom's life is going to be so much longer and "worse" in the nursing home, then if she was at home?. Her health isn't going to change (except for the natural progression of her diseases/illnesses) when she goes into the nursing home. What is changing is where your Mom is sleeping and eating. Your Mom could have "a long drawn out life of suffering" at home also. And she can also have "a peaceful death" while living in the nursing home.

Yes, it's breaking your heart, but maybe not for the reason that you have stated. It is breaking your heart, because you will no longer be the person taking care of your Mom. Strangers, "professional caregivers", will be taking care of your Mom--and that hurts a lot. It also hurts because you will not be with your Mom 24 hours/day anymore.

Please give the nursing home a chance. Let the nursing staff show you just how loving thy can be towards your Mom. You might be surprised.

Lala17,
Thank you for your kind words. Interesting that you had a compassionate cardiologist who agreed to turn off your mother’s pacemaker. I’m sorry for your loss but happy to hear she went peacefully in her sleep. Did she have the defibrillator type?

When I brought it up at her pacemaker check the cardiologist could not shoot me down fast enough. He said all it would do is make her a fall risk. He told me that we didn’t have to replace the battery, which has about 4 to 5 years left. He could not get out of the room fast enough, to be honest.

Another poster had recommended the book “Knocking on Heavens Door” so I read it and it was very good. I could completely relate to the author’s position and feelings of helplessness as she saw her father deteriorate to just a shell of a person while his pacemaker kept his heartbeat steady....

Unfortunately it’s looking as though keeping my mother at home is not going to be realistic much longer. I just physically can’t do it. So instead of a peaceful death at home in her bed I’m afraid it will be a long drawn out life of suffering in a nursing home. It’s breaking my heart.

Dear M Sweeney...I am sending strength, comfort and kindness to you and your Mom as all these health and care issues are a lot for both of you. My Mother had COPD, anxiety/depression issues and Congestive Heart failure and dementia and some other things. She was not happy living without her freedom and had signed a Do Not Resuscitate form and I was her POA so we spoke to her cardiologist and had her pacemaker turned off. She was not in pain after but ate littlenot related to pacemaker turn off) and died a short time after in her sleep.  I was under the assumption that the pacemaker was prolonging her life. The Doctor should be able to better advise you. Since your Mother was clear that she would want to only live with a good quality of life and no extreme measures then you should feel no guilt about following this path if it will help her die naturally without pain. I wish there were an easier path to end of life decisions and I hope you have a good support system. I think you are following a brave and compassionate path and I hope the cardiologist is very helpful and compassionate to you and your Mom.

Mom had a pacer/defib, so it had to be turned off, otherwise the defib would have kept trying to restart her heart. There were no issues when I asked for it to be turned off.

MSweeney- my mother is 88. Her pacemaker was put in 4 years ago. I am understanding where you are coming from- re the dementia and various health problems. Sitting there with eyes closed, not initiating any conversation- only able to lie there some days, bowel issues etc. so depressing to watch this slow and grueling decline. Tomorrow we go to our cardiologist where they will tell us how much battery life is left etc. I am sure this has prolonged my mother s life, which helped for a couple of years until Parkinsons and dementia kicked in. She really has very low quality of life at this point. And when the battery is needing to be replaced and they want to go in and put another one in, her wishes are quite clear that it won't be happening. The ICD Pacer is the one that shocks or defibrillates the heart. You can request that one to have the defibrillator in it turned off to avoid that shocking/kicking feeling that would occur at the end. My mother has the one for a slow pulse. I'm not sure if it would continually try to kick in if she were to be actively dying. Going to ask! Take care

My father had his defibrillator turned off. It was his choice and his doctor followed his orders. Dad passed away on February 2, 2017 and it had nothing to do with his device. I think he was afraid of what he would go through if the device fired. The doctor explained it to us and it was horrifying to know what happens to a person when the device actually fires.

DeeAnna, you've given me some food for thought. I don't regret getting her the pacemaker, I believe it gave her some quality years of life. But maybe I am blaming the pacemaker now for keeping her heart steady as the rest of her disintegrates. I definitely have some anger, mostly towards the unfairness of it all. I'll have to work through that part on my own.

I appreciate the scriptures, I do have faith, especially in the resurrection (Acts 24:15). That's what makes it hard, some days I just pray that she falls asleep in death because I believe she's better off in that state than how she's living now.

Thank you all for your comments and kind words, this discussion has given me a lot to think about.

Msweeney, you are right in stating that the pacemaker “prolonged” your mother’s life. If your mom had not gotten a pacemaker eight years ago, she would have died much sooner, maybe 5-6 years ago because, as you stated: “her heart…would have slowed down and eventually stopped. Nature taking its course.” If your mom had not gotten a pacemaker, you most likely would not have experienced the past eight “good” years with your mother. You might have experienced/enjoyed only two or three “good” years with your mom instead of eight “good” years.

Earlier you stated that the pacemaker:
“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.” Msweeney, are you regretting that your mother got a pacemaker eight years ago because your mom now has so many health problems?

Please forgive me for asking such a personal question, but I think that it is something you need to consider. I get the feeling that you are angry that your mom is so sick and that you are blaming the pacemaker for her many health problems. We all get angry when our parent’s health starts to decline or worsen. We all want our parents to be the healthy persons they used to be. Unfortunately, “LIFE” doesn’t work that way. We all get sick and we all die. Sorry if I have added to your misery or emotional pain.

Countrymouse, I agree with you...I'd rather stop thinking about it for now.
This is a very personal and emotional subject that we are discussing. Unfortunately, it won't get any easier to talk about or think about for quite some time.

Msweeney, God is HOPE (Romans 15:13) -- God is COMFORT (II Corinthians 1:15) -- God is WITH YOU (Isaiah 41:10) I am praying for you with faith, hope, and loving care. DeeAnna

My experience was this. Dad had a pacemaker/defibrillator. If nothing was done, then the process of dying would be painful since the defibrillator would activate multiple times (like getting regularly kicked in the chest). Luckily, his generator needed replacing when we knew his condition wasn't anywhere near as good as when it was implanted. We chose to replace it with a standard pacemaker. His cardiologist was not of the opinion that his simple pacemaker should be disarmed if his condition deteriorated. When he passed under his particular circumstances the pacemaker was not an issue. My mother had a pacemaker (in fact four over the span of 22 years) without which she would have died long ago. When she went onto hospice, I discussed her pacemaker with the intake nurse who stated that they do not turn off simple pacemakers. When, mom passed, her pacemaker didn't cause a problem. So in one case a cardiologist said no and in another case a hospice nurse the answer said no. The only yes was to disarm a defibrillator which is most easily done at the cardiologist's office. Perhaps, the feeling is that disarming a pacemaker is too active an action to end the person's life? You say that the pacemaker is 8 yrs old. If you loved one is bedridden and their resting heart rate is naturally very slow, then the pacemaker may be used most of the time every day and that battery will be losing strength. The reduction of battery life isn't a gentle slope; it stays fairly level, then drops off a lot more precipitously near the end. It sounds like a good discussion would be about not replacing the generator when the time comes.

My dad had a pacemaker with a defibrillator. When he entered hospice I had to call for them to disable the defibrillator as would have shocked his heart when he was dying. They came to the house and ran a magnet over the pacemaker that deactivated the defibrillator. It was a very simple process but was extremely difficult for me since it was something I had to do actively as part of his death. They assured me the pacemaker would make no difference in how he died. I've often wondered since then, though, as the pacemaker kept his heart beating steadily until the end. I guess I will never know if it made a difference or not.

What I don't know and would be interested in hearing more about is whether a pacemaker could stop you dying if you're going to die. If it *always* prolongs life to a greater or lesser extent.

Your mother's pacemaker supporting her heart function is one thing - it's maintaining function. But if, God forbid, for example, she had had an infarction the pacemaker couldn't have stopped it.

Or. The pacemaker maintains electrical activity and keeps contractions going. But if the valves of the heart don't close, or if the muscle of the heart weakens beyond a certain point, the heart will cease to function as a blood pump. The pacemaker will not prolong life.

Normally I'm very interested in learning more about things but I'd rather stop thinking about it for now.

[Sorry, DeeAnna, I've only just seen your links which I will look forward to visiting another time - thank you]

I understand a person can die while they still have a pacemaker. But I don't understand how it can be said that it doesn't prolong life. If my mom didn't get her pacemaker eight years ago I assume her heart would have slowed down until she died. To me, that's prolonging life.

A pacemaker's function is to assist the heart in performing its job easier or in the case of Atrial Fibrillation, to help the heart rate stay regular and within a specific rate but it DOES NOT prolong life. The pacemaker requires the heart to be able to respond to the electrical impulses the pacemaker battery sends to the heart muscles.  A person can “die” but their heart continue to attempt to respond to the electrical impulses being sent by the pacemaker resulting in the person having a pulse until the pacemaker is turned off. 

I had a friend whose grandfather had a pacemaker. The grandfather was 102 years old and had a very irregular heartrate that varied from 82 to 120 beats per minute. When he “died”, his heart rate stopped being irregular at 11:30 AM, however, he had a pulse (which was very regular and matched the pulse rate set on the pacemaker) until 1 PM when the doctor turned off the grandfather’s pacemaker.

Do pacemakers work even after death? See the article posted by Science Illustrated on February 27, 2012:on scienceillustrated.com.au/blog/medicine/ask-us-will-pacemakers-still-work-after-death/ which gives a good explanation of how the pacemaker works when someone dies.  I hope that this helps answer some of your questions.

I don't think it's depression, I think it's the dementia. She simply has stopped initiating any conversation. If I ask her a question or make a comment she will happily respond. But it's like on her own she doesn't know what to say.

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.

Sweeney, that doesn't sound like dementia. It sounds like depression. Is mom being treated for that?

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.

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.

Does having a defibulator/pacemaker prolong life. I understand the pacemaker answers, but how about the defibulator?

MSweeney: Your mother must be terribly frightened and in pain. Why even consider anything that would prolong this condition?

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.

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.

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.

I'm interested to know what you find out, and what you decide to do. This is an interesting question!

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.

Hospice usually has a protocol for their patients with pacemakers and/or implanted defibrillators.

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!!!

When my husband was dying in the hospital and had a DNR, they turned it off then

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?