Individual rights and Free Will

I want to say how much I appriciate this site and t theo many of people I have interacted with. Having said that, I hope everyone who reads this knows that EP doctors receive their certification as a specialist by how many devices they are able to put in every year.

There are so many sanctimonious people both here and else where who think that everyone who has an ICD should be as greatful as the next person. When a person states they don't want their ICD, asking them "why they don't want to live" and that "they should be greatful to be alive" is just wrong. First off, if you haven't an ICD then you don't know what it's like to live with one. They are nothing like PMs. Not wanting an ICD does not equate to not being greatful to be alive.

Having said that, secondly, if you have an ICD and have not experienced a real electrical storm then withhold judgment. They are terrible! Getting a shock now and then might be bearable but getting multiple shocks in a short period of time is a different matter.

Thirdly, I signed a consent form. Didn't know I had done so till the hospital sent me a copy upon my request for the investigation and complaint I filed with the hospital because I didn't remember signing it. My EP, at my first follow-up appt, when I asked her why I didn't remember having agreed to the procedure, flat out said it was because I had a brain injury. How can there be informed consent under those conditions?

I did not want mine. The doctor know I didn't want it, because she manipulated my family to apply pressure on me to have the procedure. I was later told she did not think I would come back in to have it put in and that it would be easier to get the insurance to pay for it if it were done before I left the hospital. The psychiatrist I see says he is hearing more and more stories of people being corersed into having devices they don't want Just because a person qualifies for one doesn't mean they have to have one. No still should mean no, whether a doctor agrees with you or not. there is such a thing as free will.

Joy

8 Comments

Joy

by MHCHAMPION - 2008-05-19 10:05:24

I feel you should have had a true choice; one when you were alert. I do wish for you the best.
Margaret

Joy

by Bionic Beat - 2008-05-19 11:05:55

No, should always mean No.

I also wish you the best.

Dealing with medical decisions

by ElectricFrank - 2008-05-20 01:05:27

This is one of the most difficult things to deal with. Most of the time when they are standing there with the consent form we feel lousy, confused, or maybe barely conscious. Or a spouse is being told we may not live if they don't sign. Like so many things in life today they take advantage of the fear factor to sell whatever they have decided.

One important thing to be aware of (at least in the US). There is nothing to keep you from adding statements to the consent form. Most of the forms are blanket authorizations that let them do most anything. When I checked in for my implant I gave them a signed letter which I required them to initial receipt that stated that I was there for the express purpose of having a Medtronics Kappa 701 pacemaker implanted and that no other procedures were authorized without my consent (or my wifes if I was unconscious). I found out later that the cardiologist was planning chemical stress test in addition to the implant. I also put a note under my signature that I was to be informed of any medication that might affect my judgment before asking for additional authorizations from me. The important part is to initial each additional statement to document your intent.
Maybe the most powerful thing is to have it written on the hospital chart that I am to receive copies of any tests, reports, etc. that document what was done and the reason. This will stop a lot of problems without having to understand everything, because they know that their actions can be reviewed later.

frank

a perspective from both sides of the line

by kmhayward - 2008-05-20 07:05:02

Hello

Having read your post my initial reaction was exactly as you described. Be thankful you're alive! However on reflection i do agree with a lot of your points. When i had my device fitted i didn't even get to sign a consent form, although the fact that i pursued the department to give me a date for the procedure and then turned up on the day is consent! I also happen to work in the proffession and implant devices on a regular basis. I work in the UK so there is no financial pressure on us to implant lots of devices so there is a difference there. We consent every patient days before the procedure. Each patient is fully aware of everything that may occur, including any extra procedures that may be necessary to keep that patient alive!
As for the unfortunate side effects of ICD's, these can be reduced and even prevented by a skilled technician, the optimisation process can be tough in some patients and shock storms are extremely unpleasant.
At the end of the day, you can always have the device switched off.... yes this is possible..... or even have it removed. Again this is your choice. You will be advised against it if you have episodes of VT and this device is indicated for your condition. But if you protest enough, you will probably be assessed be a doctor or two to ensure that you understand the consequences of your decision and then you sign another consent form and the device is removed or switched off.
If you feel this is the route for you then have the courage of your convictions and do it. As you have rightly stated, it is your body, you life and ultimately your decision!

Joy

by hotform - 2008-05-20 07:05:48

I would have to say that it is your life and your choice.
You certainly have your reasons for not wanting an ICD.
Instead though, of talking to us, it really sounds like you should be talking to an attorney. He can tell you better than any of us what your rights are, and if the unit can be switched off. There will probably be a lot of legal wrangling to go through as there are doctor and device manufacturer liability issues that no one is going to want to touch.
Not to sound redundant or sway you in any way shape or form, but you will find a lot of people here who felt exactly like you did after implant. Time truly does heal all wounds, both physical and mental, and if you asked the people who didn't want to be implanted if they felt the same way a year later, its a safe bet that you would be hard pressed to find many.
I'm reminded of a saying I sometimes quote when the chips are down and life just is not going good. "Life Sucks, get a helmet"
You only pass this way once, make the best of what you can as soon enough you will be able to say "It is a good day to die"
Life is but a fleeting drop of vapor and you are only here for a moment in time. Enjoy it Joy and the people around you as best you can. Rick

Certification not based on volume

by ted - 2008-05-20 08:05:51

I must disagree with your theory that certification as an EP is based on the number of implants per year. While a doctor seeking to qualify must demonstrate participation in a minimal number of implantations, there are many other requirements. But certification is not based on volume.

No Should Mean No

by SMITTY - 2008-05-20 12:05:25

Hello Joy,

I am in total agreement with you on many parts of your message. Those items I don't automatically agree with are not because I disagree, but I do no have enough knowledge or experience on them to pass judgement.

I certainly agree that many people are getting pacemakers and/or defibrillators when they are not needed or before a thorough evaluation has been completed. My opinion is that these things are cash cows (I'm stealing a couple of words from Electric Frank there) for many doctors and hospitals. Then you run into an HMO like we have. They own the hospital, and more 90% of the doctors practicing in that hospital are on their payrol. As we were often told years ago when I was doing sales work along with other duties, "nothing happens until somebody sells something." Believe me every one of those doctors know that as well as any snake oil salesman ever did. Now I'm not equating the doctors to snake oil salesman, but let's face it if they did surgeries only when the patient was in dire need or didn't order tests whenever they thought one could be justified their employer would be in a world of trouble.

We have been with this HMO for nine years simply because they have outstanding facilities and are by far the closest medical facility. So we stay and they continue to collect 80% of their charges from Medicare and 20% from their insurance company for treatment that may or may not be necessary. Incidently, I pay more than double for their 20% coverage than I do Medicare. But enough on my pet peeves.

As for the signing of a release before we get surgeries, that has got to be one of the greatest injustices many of us will ever see. The doctors, nurses, or whoever, convince us we need such and such procedure then they come a few minutes before the procedure and "we need you to sign these forms." In my case when I got my pacemaker (which I did no need at the time) I was half goofy from Valium (I know, I know, many people think I must still be taking the maximum amount of Valium every day) when they brought me those forms to sign. I can guarantee you I'm not the only one caught in that trap. Except in an emergency, why couldn’t we get those forms far enough in advance that we could really see what we were signing.

That’s enough from me, but I hope you can discuss your situation with an attorney if you feel someone took advantage of you.

Good luck,

Smitty

ICD Settings

by ElectricFrank - 2008-05-22 02:05:14

I don't have have an ICD so I haven't studied the range of settings for them like I have for a pacemaker. I'm just guessing that there would be a range of options between having shock storms and not having it at all. There must be settings that determine under what conditions it fires. And as seems to happen in medicine some docs are more conservative than others. Before turning it off completely or removing it, I would consider setting it to wait longer before firing to give your heart a chance to recover on its own. If it still fires under those conditions then it is pretty obvious that it is doing something useful.

I totally agree though that we should have the right to decide how much we want to to do to stay alive. I go so far as to assert my right to die anytime I chose without justifying it to anyone. However, I'm enjoying life and its challanges too much to call it quits yet!!

frank

You know you're wired when...

Friends call you the bionic woman.

Member Quotes

I had a pacemaker when I was 11. I never once thought I wasn't a 'normal kid' nor was I ever treated differently because of it. I could do everything all my friends were doing; I just happened to have a battery attached to my heart to help it work.