End stage heart failure and ICD turn off

[ireneo]

My Dad is in end stage heart failure, has an ICD/pacemaker that's been keeping him going for awhile now. At his last doctor visit there was some talk about turning it off. My Mom wasn't in the room and didn't hear the reasons for that. She asked me if I knew why they would consider it. I haven't a clue. He's got hospice care and is DNR now. If his ICD fires off, well, that's good if it helps. In the meantime his pacer keeps his heart rate up to a normal level (he tends to drop into the upper 30's). With the device turned off I'm guessing the pacer won't be working either. My Mom thinks they're trying to finish him off sooner. I don't agree at all but I am wondering if anyone knows why the doc would consider turning it off. The battery's getting low as well. What would be the benefit?

[lynettetho]

My 61 year old mom had end stage heart disease. She had a AICD implanted for over six years and had been functioning well. In the end she was placed in hospice after many hospital trips and her health spiraling downward. We were advised the family to cut the defibrillator off or it would deliver shocks. After many painful shocks and a unanimous decision we cut it off. My mother died two days later it was hard for us but a relief that no more shocks would be delivered. She had congestive heart failure I hope this helps someone out there!

[ireneo]

As an update and a comment:  my Dad was on hospice for awhile, 6 months actually but with their care, he stabilized and was taken off hospice. His ICD battery was running low and they decided to put in a pacemaker instead. In Aug. of 2008 he passed away. . . .  but he died from lung cancer that had spread. All his symptoms were consistent with end stage heart failure and they completely missed the cancer. At least he went peacefully and the pacer  kept his heart comfortable.

[scared759]

I want to turn mine off when I get in my laast stages of CHF. It has went off a few times and each time is like being electrocuted. A pacemaker don't hurt, but a ICD is pure torture and besides that, each time it goes off it damages more heart muscle-may make you stay alive from irregular heart beat though. I have had CHF for 12 or so years and it went off about 3 time, twice in one row. It was horrible, terrible, like a mule kicking you with 700 jotes of electricity. I worry a lot now about it going off. Had to go to mental therapy after it went off to cope with it.If they had explained to me about the pain when it goes off, I would have chosen to took my chance with medicine only. This is for anyone else in my shape. I am afraid to have surgery or anything-afraid it will make it go off.  a female with a ICD

[sarageorg]

I lost my Dad (Ottis) 3 years ago.  It is hard to let go.  You should spend as much time with him as possible.  Just keep telling him you Love him.  I hope he is right with God.  I will pray for you.

[Angie O Plasty]

I think they can turn off the defib function without turning off the pacer, and that might be an option to consider.  I wouldn't agree with turning off the pacer, but I can certainly see the reason for turning off the defib at a point where someone is dying and you are trying to make their death as peaceful as possible (getting repeated jolts from the ICD would tend to make that difficult).

[ireneo]

I wanted to let you know I've read your posts and want to say thank you. The decisions are hard to make, hard to even think about. My Mom is a real piece of work and drains me. I won't go into all the details since they're so pathetic they're almost laughable. Her most recent is a kind of contest as to who dies first. She's nagging my Dad to make plans for his care in case she dies first. He keeps telling her that isn't likely but she keeps needling him. I wonder why?

I did ask my Dad about turning off the ICD but keeping the pacer going. He didn't know if that was possilbe. I imagine he'll ask someone soon about that.

Thank you all again for the support. Some days are just worse than others for me when thinking about it all. It helps to vent a little here. Take care of yourselves too.

[anacyde]

I just want to echo what others have said and also to send warm thoughts your way for comfort to you and your family.  End of life decisions are most difficult, I've been through this twice - both times I was married, my husbands both lost their fathers to terminal illness; liver failure and cancer, respectively.  Decisions needed to be made in both cases, and I know they seem ambiguous at the time, and sometimes later as well.

I would imagine turning off his ICD at this point would be due to his end stage status, much like in my father-in-law's treatment, his radiation treatment was eventually stopped when it was realized that his disease stage was not compatible with survival even with continued treatment.

Kindest thoughts to you and your family.

[va_tony]

Sorry that the end is so near. Many patients with terminal illness instruct the hospital not to take any extraordinary measures; in particular, not to resuscitate them if their heart stops (or to put them on a ventilator).  In your Dad's case, the ICD will act to do just that...keep his heart beating.. so it's a valid question from the hospital's point of view.  Do you want him kept alive under any circumstances, even if quality of life suffers? Also, there may come a point where the ICD will start going off many times a day and make your Dad's life even more miserable.  Tough issue. My sympathies are with you.

Best wishes

Tony

[Sweetwaterguy]

    End of life issues are usually complicated, almost always more complicated for the family than for the patient.  Each state's laws are different regarding living wills and end of life decisions, but one thing most have in common is honoring the wishes of the patient either through a living will if he is incapable of acting on his own or is his direct instructions.
    If this is your fathers wish, listen to him.  As sad and difficult as it must be, honor him by supporting his decision.  Please be assured his doctor would not disconnect or turn off life supporting devices  unless  appropriate ethical and legal  criteria were met, the most important of which is the decision of the patient himself when there is no hope for recovery.  
    My family has dealt with this issue also, and I know it is not easy.  My thoughts are with you.

[PikaPika88]

Irene, my heart is going out to you and your family.  Keep him comfort.

[betsumner]

Ireneo, this has been a long hard journey for you and your family.  Hang in there, my prayers are with you and your Dad.

[ireneo]

Thank you all for your thoughts. I understand that he wouldn't want the ICD firing off over and over again to save his life. How miserable that would be. But to turn off the pacer as well? I know he talks about how tired he is and he does look weak and thin. But he's not bedridden yet. He bathes himself, can walk around a little. We even went out to lunch on Monday (we took his motorized wheelchair). So it's hard to tell how bad he really feels. I had this vision that they would turn off the ICD when he was completely bedridden and out of it. But with heart problems maybe dying is different than someone with cancer. As for the legal loopholes and such, I don't know what Washington is like. I'm in Oregon and we have the whole assisted suicide/death with dignity business. I doubt his doctor would mention the turn off if it wasn't legal. Any way, thanks for the input. I guess I have to accept that he feels a lot worse than he looks. After these past few months I've come to terms with letting him go. Seeing him miserable isn't what I want for him.

[Sandyyy]

My mother is in a similar situation.  I would say NOT to turn anything off until your father is not able to do anything for himself -- then seriously discuss it with him.  Even though life is difficult for him, that doesn't mean he wants to die yet.  He can still enjoy being with his family.  He shouldn't make the decision to turn anything off when he is in a particularily depressed mood either.  Just my opinion based on my mother, her limitations, and feelings.  Some have a strong will to live even though they are suffering from one degree to another and know the end will come.

[ireneo]

I think the decision will be his. I'm not sure he'll even tell us about it. Definitely, I don't think he should tell my Mom because she's an emotional, angry person. He doesn't need to hear any more from her. I'm not anxious to see him go but if he's tired of being tired and spending his days in a chair, then who am I to force him to stay with us? Until I'm in his position I can't say for sure what he should or shouldn't do. The selfish side of me wants him around for awhile. But the reality is that he's just hanging around, waiting. We've tried to stimulate some interest in life, doing things, talking about things. But he feels that he's done. He's pretty ready to go. He has some fear about the process but not the outcome. I'm happy for the past few months we've had with him. He was always pretty much in his own world. For years my Mom called him "narcissistic." I think she liked the word :-)  He wasn't the most outgoing and giving person. But now he's more open about his feelings and regrets too. It's been good to talk about deeper things than TV shows and new cars. OK. Enough rambling. Again, thanks for your help and listening ear.

[dmil241]

I can only tell you what happened in my father-in-law's case.  He was in the hospital for the umpteenth time, tired, in pain and at the end of his life. His doctor told him that they could turn his off if he wanted. The only advantage was to make his passing quicker and easier. He waited for a day, visited with his only granddaughter and then asked the cardiologist to come in to turn it off (demagnetise it basically). In his case, he passed away almost immediately. It was so strange because they had done an interrogation on it the day before and it had not even been going off. The doctor told him it could be days or weeks before he passed. It was practically immediate. ??? Shocking for the family who expected him to be around a bit longer, but definately easier on him. He was really suffering. I am sure that this is hard on all of you. I am sorry and will say a pray.