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My grandfather, who is 98 and declining, but not actively dying now, went on hospice. They feel he may have "a few months" to go, right now the hospice is all about his pain management and care. He is in a lot of pain, has cognitive heart failure, etc. He also has an implanted pacemaker and defibrillator. The hospice team advised we turn off his defibrillator because if his heart start to fail towards the end of his life, it can be painful, cause problems etc. I also called his regular cardiologist to see if/when the pacemaker has been used (like if it is being used every day). I can't in good mind turn it off. The cardiologist said, "it has never been used on him - they reviewed his monitors/scans, and that we can turn the machine off". But now I am plagued with the fear, if we do turn it off and suddenly, he dies of a heart attack, how can I ever forgive myself? Does anyone have any advice or expertise or have gone through a similar experience? Thank you so much.

Hi Marie,

First, let me say how sorry I am about your grandfather.

We went through this same thing with my mom. Mom had CHF, which is what she eventually passed from. She also had a pacemaker/defibrillator unit, and once she went into hospice, we had the defibrillator turned off. It was a simple, non-evasive procedure that took place in her cardiologist's office - she didn't even have to take her shirt off.

Hospice told us that once she was dying, if the defibrillator wasn't turned off, there was a chance she would be getting "shocked" while she was actively dying; while this would not be painful for her, it can be very difficult for the family to observe. And at the point she was at in her CHF, having a defibrillator wouldn't have made one bit of difference to her life expectancy. Also, turning off the defibrillator would NOT affect the pacemaker, which was really more what my mom needed.

Also, if your grandfather were to have a heart attack, it is highly unlikely that a defibrillator would keep him alive. A heart attack damages the heart muscle, and a defibrillator will not help that or keep it from happening. If the heart muscle is too damaged, no amount of shocks will keep it beating, unfortunately. If you - or anyone in your family - are having doubts about what to do, then please talk to his cardiologist and find out exactly what the pacemaker is being used for and what the defibrillator is being used for; it will set your mind at ease and help you to make an informed decision that you will be able to be comfortable with.

I wish you peace through this journey.
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MarieMottel Sep 12, 2024
Thanks, that made a lot of sense to me and made me feel a lot better. I’m sorry all of us are in these difficult decisions in life and I’m glad to share my thinking out loud. Appreciate your response. I did talk with his cardiologist who again advised we turn it off for they all explained when the end of life days are upon us it would be painful and there are options like placing a magnet on his heart, etc. but that’s why they recommend taking him off the defibrillator now. Thanks so much for your thoughtful response
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He's 98 and in a lot of pain. How can you not turn off the defibrillator?

Let him go in peace without the pacemaker potentially restarting his heart.

The cardiologist said the pacemaker has never been used by your grandfather based on their readout so I have to wonder what the big emergency was where they insisted that he needed one in the first place.
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Southernwaver Sep 12, 2024
Exactly this
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Until I fully understood the repercussions of performing CPR on a 91 year old man, I was insisting my father not sign a DNR. Once I got all the facts straight in my mind, I encouraged him to sign the DNR which he did.

Knowledge is power, my friend. We all fear making decisions on behalf of loved ones that may be wrong and bring about their demise. We also fear making decisions that will ultimately cause them more pain and suffering in the end.

I'm sorry you're going through such a thing, I feel your pain. Please take notgoodenough's compassionate advice to heart. All we can really hope for is a peaceful passing for our loved ones when God is ready to take them home. Hospice helped both of my parents achieve that peace with their passing, and for that, I am eternally grateful.

Best of luck with a difficult situation.
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You have the emotional side, which is “what if my 98 year old grandpa who is dying from heart failure has a heart attack” and “it will be my fault because I turned off a device he has never used” which is irrational.

Then you have the logical side which is “I’m going to turn this off because he has never used it and when he dies it might cause him great pain and suffering.”

You need to take some time and space to understand that you are pre grieving and then come to whatever decisions are in HIS best interest, not yours.

Good luck.
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I’m 84 living with heart failure, and I turned off my defibrillator with my pacemaker. If my heart stops, please don’t jolt me back to life; do not resuscitate me. Let me go. Does your loved one really want to go on living in pain?
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So, your granddad has a pacemaker that has 0% of pacing? That is the strangest thing I have ever heard.

When my dad was not doing well I asked his cardiologist what would happen if he died, would he keep getting shocked and I was informed that yes, he would get shocked until the defibrillator was turned off. I knew then that I would encourage him to have it turned off so nobody had to face that. Because it will not restart a dead heart and having him shocked would have been terrible for him and anyone that had to bear witness to that.

I would not turn off the pacemaker though. It does NOT keep someone alive, it just paces the heartbeat and keeps them comfortable.

My dad did have another heart attack and said that it felt like he had been kicked in the chest by a mule, so I would definitely encourage you to have that disconnected.

At 98 your grandad has had a long life, he is on hospice so nothing you do will change what is happening, he is dying and the less he suffers the better.

These situations are just hard and sad and scary, may The Lord give you strength, courage and guidance during this difficult time.
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MarieMottel Sep 12, 2024
thanks for your response, I wrote it in the middle of the night and I wasn’t clear. His pacemaker is on and is 100% working his pacemaker will stay in. He has a back up defibrillator that jumpstart his heart should he need it. That has never been used the defibrillator. And that is what Hospice is recommending we turn off as well as his own doctor. Sorry for the confusion I appreciate the thoughts. It’s a really hard subject.
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My dad was on hospice and no one mentioned turning off his pacemaker defibrillator. It started going off causing him great pain. Each shock was stronger and getting closer together. It was very painful for him and traumatizing for me. I still feel the heartbreak of being helpless to help him. Hospice finally got a strong magnet to keep it from going off until a technician came to disable it. That was 14 years ago and I still haven’t gotten over it
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MiaMoor Sep 18, 2024
I am so sorry for what you went through and for the pain suffered by your dad.
I hope that you have found peace, as he is at peace, too.
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I agree sometimes in life it makes sense to go against professional advice. I understand not having a blind faith in doctors. In many cases people have survived by going against professional advice. I don't think your situation is one of them. I'm sure hospice would physically do it if you agreed so you don't actually have to be the one to do it. Love means doing the hard things love means sacrifice and this includes our selfishness. We naturally selfishly want to cling to our loved ones when they are infact tired. It's more humane and takes a lot of love to actually let them go. You said yourself he is in pain. No guilt. I'd feel more guilt prolonging his pain. These are sometimes the conundrums we do find ourselves in with having such modern life saving medicine and technology. You just can't see. Your not letting him die your letting his natural life cycle happen. And wow at 98yrs old you were blessed with having him a long time. My dad died of a brain tumor at 60yrs old when I was 18 yrs old.
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An implanted ICD works by continuously evaluating his heart rhythm for "lethal cardiac rhythms" and gives a "shock" only when one is detected. It is painful. In the case of your grandfather, his heart is failing - that is what hospice is telling you with his advanced congestive heart failure. Turning it off will not cause him to have a heart attack. Keeping it on will most likely - almost certainly - not prolong his life. So feel free to have the cardiologist - or one of his team - turn off the AICD. It is very easy to do externally with the proper equipment.
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MarieM, although my heart hurts for you I am so, so grateful you asked this question in this forum and for the compassionate answers you received. It seems so obvious, but it honestly never occurred to me.

I will undoubtedly be faced with this same situation at an emotionally vulnerable time, and now, because you shared, I have been counseled along with you, and won’t be caught off guard.

Marie, I hope you can now sit peacefully with your decision.
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