I want to turn off my pacemaker.

Do I have the right as a human being to discontinue the use of my pacemaker. I don't want to wait for it to need to be replaced because I just (like an idiot) replaced it. I just want to know can the medcial community or the courts or anyone force me to continue to let this operate in my body if I want it turned off?

8 Comments

Turn Off Your Pacemaker?

by SMITTY - 2009-12-20 11:12:06

Hello Grammy,

Let me ask you a couple of questions? Why do you want it turned off and how much do you use the pacemaker. I'm sure you know a pacemaker, in most cases, in an on demand device. In other words it only helps your heart when your heart rate drops below the low set point on the pacemaker.

With that said, I say it is your body and your pacemaker so I can see no reason you can't do as you please about the pacemaker, unless having it turned off will mean you are in effect committing suicide. Then you may have a problem getting a doctor to assist you with that.

I got my first PM in 2000 and I had absolute hell with the thing shocking me and try I as may I couldn't get any help with the problem. After almost three years of that I went in and demanded that it be turned off and a very indignant doctor did that and proudly announced "Mr. Smith you are on your own now." At least he said he let me believe he turned it off, but I was to find out later that he put the low set point at 30, which meant the thing would come alive if my heart beat dropped below 30. However, I was not told that was what he had done and learned what had actually been done from somewhere, possibly here at the PM Club. I will never tell him, but I'm glad that was what he did because after a couple more years, I needed the dang thing and was also able to get the shocking problem corrected.

I'm not really sure o a pacemaker can be turned completely off but can only have a very low set point. So you might need to have a discussion with your doctor to see if it can be turned off or if you need to have it removed to be completely without its help.

Good luck,

Smitty

Just one question

by lenora - 2009-12-20 11:12:21

Did you already ask your doctor and he said no? If that's the case and you really want to do it after careful consideration of the possible consequences to your well being, maybe it's time for a legal consultation. Lenora

terribly important question

by Ashregan - 2009-12-20 11:12:45

I have a pacemaker. As a libertarian it is very, very important to me that I can control my own medical treatment.

Of course (and I'm sure I'm not saying anything that is new to you) you would want to be sure, completely sure, that this is really what you want, that you have completely thought out why you want this, other possible options, and the possible consequences.

But having said that, from my perspective at least, obviously you are morally entitled to be free of unwanted medical intervention, in this country. I mean, no one is going to be able to force you to take a heart medication if you are of sound mind and don't want to take it (for reasons of side-effects or an aversion to relying on medication, or anything else).

Why should it be any different with discontinuing pacemaker use? It absolutely should be your choice.

When I got my pacemaker I made the electrophysiologist promise in front of witnesses that if I was dissatisfied with the device and how it made me feel that he would turn it off. He agreed and noted that over the years he had in fact had a few patients who made this decision and he honored it as long as they were competent to direct their own care.

I don't really know the best approach if you have a doctor who is not willing to respect your wishes I don't know just how you would find one. I will say that you're not the only one in this position, I've heard of someone in a similar position seeking out a hacker to put his pacemaker in test mode for him in order to drain the battery because he didn't want it to function anymore and he had no one to turn it off for him.

Maybe search on the internet, see if there are court cases on this subject. Or tell your doctor straight out what you want and have a talk about it, he/she may be more understanding than you expect.

And alway keep your mind open, in case there are things you might want to re-think or other options you want to try.

Good luck,


Anne

Easy

by ElectricFrank - 2009-12-21 02:12:42

If I wanted to shut down my pacer (which I don't) and couldn't get it done, I would just do it myself. Just use an Exacto knife to cut a small slit over the area where I can feel the leads. Then use a my wire cutters to cut both leads. Job done. Oh I forgot, put a butterfly bandage over it to let it heal.

Now for a less aggressive approach. If you don't have an ICD as part of the device, you can have it set to where it does very little (like Smitty mentioned). With this setup you shouldn't have any discomfort from it getting in the way. If at some point you found you wanted it again it would just be a matter of programming it, rather than convincing an insurance company to pay for another one.

Keep in mind that being without pacing if you really need it is not necessarily a matter of living or dying. Having a very low heart rate can keep you alive, but very miserable. Insufficient blood flow eventually will result in organ deterioration with all sorts of other problems.

frank

REASONS TO NOT DO IT

by pete - 2009-12-21 04:12:36

Reason 1, If you are pacemaker dependent it is classed as suicide.
2. If you commit suicide you will leave all of your close relatives with a guilt feeling and a life long burden.
3. If it is suicide it is selfish.
4. If you think this could give you a quick and pleasant exit from the land of the living, think again. It will probably make your demise a lot more unpleasant than it otherwise would be. Are you sure you want this?
I strongly advise you to seek help and advice over you present frame of mind. You are deciding to turn down help from those who are trying to help you, and who are in fact doing so. This is not normal . Life is like walking a tightrope only as we get older the rope gets thinner and the wind gets stronger. You were and have been given the precious gift of life on this extraordinary planet. The time you have left might be all you are going to get so dont waste it by trying to shorten it. Keep your chin up. Peter

Error in my message

by ted - 2009-12-21 05:12:02

I meant to say DON'T listen to people who will help you self destruct.

No doctor will do it

by ted - 2009-12-21 05:12:12

You probably have the right to do what you want with your own life an body (assuming you are sane). But I doubt that any doctor in his right mind would risk his license and his financial future to assist you in a slow suicide. You appear to be very depressed. Try to get some professional help and listen to people on the internet who will try to accomodate you and help you to self destruct.

I understand the feeling

by ShadowWeaver - 2009-12-21 05:12:41

While I have little doubt that without my PM I would be dead by now, I also wish I didn't have it. I am one of those for whom having a PM has ended the very thing in my life that has defined me for over 2 decades. I still live in near constant pain, always have trouble doing the simplest of things (tried bowling the other night and it felt like my heart was going to explode). Many are content in life to simply be breathing in and out, not so much for some of us.

What I would suggest is that you not make that decision while you are feeling depressed. If you are feeling depressed then that in and of itself will alter your decision. However, if you are not depressed and simply feel it is the best decision...well, then I would think that it would be your decision. As for me, I figure I will keep this pacemaker until I die or it wears out, whichever comes first. However, I don't plan on having it replaced as the limitations it has placed on me have made my life nothing but a shell of what it was. I feel nearly no enjoyment in life anymore as I can't do the very thing that has defined me for so long. But who knows, by the time this thing wears out (if I make it that long) then things may have changed and I may have found something else to give my life a little meaning. Just don't make the decision lightly or rashly due to depression. If you are depressed, seek help. Once you feel better, then see how you feel about that decision. Who knows, you might change your mind.

Michael

You know you're wired when...

Your ICD has a better memory than you.

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