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.
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.
If his heart stops - thank God for the suffering to have ended and for the 98 years of life he had.
The experts have weighed in. Do you trust your own medical opinion more than theirs?
Take the expert advice and love him for the brief time he has left knowing you didn’t allow your own grief to get in the way of doing the compassionate thing for him. His dying is NOT about you - don’t make it about you and your grief.
I am sorry you are going through this.
I explained that one of the meds in the syringe driver was an anticonvulsant and that Mum was close to dying. I told him that if he made her choke, Mum would die afraid and in pain. There would be nothing peaceful about her passing.
He averted his eyes and said he couldn't trust what I said. The district nurse then said if he continued, she would have to raise a safeguarding (which could mean Mum would be taken out of his care and placed in a nursing home). He later told me he couldn't trust her because she had consulted with her superior, which meant "she didn't know what she was doing". So, I phoned the GP and asked him to tell my stepdad to stop and to be very clear about it (the doctor had already said that Mum shouldn't be given anything orally, but apparently that "doesn't mean medication" 🤬). He finally listened to the doctor.
If you do not switch off the defibrillator, your grandfather would almost certainly suffer a painful and frightening death. That would be unnecessarily cruel. Let him have a calm and peaceful passing.
She wanted the devices left alone and on. Even didn't want the wires of the hospice bed interfering with them. My stepfather wanted the wires disconnected. I met with her cardiologist and threatened a lawsuit if he did it. She was a nurse when younger, healthier and did her legal paperwork. She lived another year. Stepfather was stealing from her, it took him longer. I kept interfering with his plans and took the scales off my brothers eyes, they thought he was a good guy. Ha, not.
I pray he has a directive. I don't have any guilt, I did what she wanted.
Prayers to you all.
What you could do is wait until he is "actively dying" and then make the decision to turn off the defibrillator.
You could also ask your grandpa what he wants done. You say he has congestive hear failure you do not mention dementia so I am going to presume that he is cognizant and can tell you what his wishes would be.
For what it is worth...I would have the device turned off.
I wouldn't take the chance; I would have it turned off at the first available opportunity.
I hope that you have found peace, as he is at peace, too.
Turn the pacemaker off. It’s not like they turn it off and the patient’s heart goes into arrest two seconds later. It’ll be okay.
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.
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.
We have an OP here so concerned with her own confused feelings that she would contribute to the suffering of a 98 year old gentleman.
I very much hope she gets some counseling help, or at least a description of just what happens when a heart attempts to stop with one of these devises implanted. I am amazed the doctors don't insist FOR HUMANE REASONS that this be shut off. This isn't a regular pacemaker. THIS PACEMAKER SHOCKS THE HEART. Over and over and over. It is FELT. It HURTS.
I am truly sorry, but as a retired cardiology RN I have never heard of such a thing as this and I am very disturbed by it.
You say your 98 year old grandfather is in pain.
I cannot, to be honest, even begin to imagine why you would want to prolong his dying (because that's what you are doing, prolonging a torturous dying, not prolonging "life" of any quality at all).
Our thinking on all of this is so radically diametrically opposed that I feel inadequate in terms of discussing this with you.
I would refer you to Hospice. They are handing this end of life care. To my mind, there is only relief in the passing of someone under onslaught of a failing heart. To think of the painful attempts of a defibrillator attempting to bring back this gentleman as he is finally in last last blissful stages of dying? Unimaginable!
To my mind, the painful bringing of someone back (and that's what the implanted defibrillator will try to do as he is in his last peaceful state of dying) is almost a criminal act. I saw that as a retired cardiology RN.
I completely get your point of you have a night believe that to be true. It’s just the guilt I think I’m dealing with.
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.
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.
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.