An "ethical" question....

I am curious if any of you have had your pacemaker settings changed w/out your consent? A cardiologist I was seeing told the pacemaker nurse to lower my daytime heart rate, without discussing it with me at all. I walked around for 2 months feeling like dirt before I found out what happened. They said they were "testing" me to see if I would notice. I didn't appreciate the deceptiveness, and if it had been discussed w/ me, I could have told them I couldn't tolerate a lower heart rate.

14 Comments

I think It Would Be A Fair Question

by SMITTY - 2012-12-24 03:12:53

Hello,

So far as I can tell the only difference in you and what happens to most of us is you were told after the fact. My guess is the majority of the time when they change the settings on our PM it is trial and error. At least that happened to me.

I decided things would be better if I could get some settings changed. So one day I took a deep breath and asked for an increase in the low set point from 60 to 80 and I let them make the decision on the upper set point. Then I asked to have my rate response turned on and they chose the settings they thought best for me on that.

To make a long story short I went in that day with my wife trying to get me to let her get me a wheel chair since I was so fatigued and out of breath. Coming out I was ready for a skate board and I was 80 years old a the time. Today at 83 I still have those settings but a bad back keeps me off the skate board. Well maybe the skate board is stretching the story a little but for me the results were that dramatic. True story so help me.

When you think about it changing settings on a PM and not telling you what changes you might watch for is not much difference from changing a prescription and not telling you what changes you might watch for.

Good luck,

Smitty

settings

by Alma Annie - 2012-12-24 06:12:59

My EP never tells me anything. He does what he wants to change or not to change. I did have a go at him a few months ago about not telling me anything and I had a list of questions. He dutifully answered them and then said I was not accepting the fact that I had a pm. Not true, I just want to always know what is going on. SO he wants me to go to a shrink. My GP says that is so wrong and he knows I do not have a problem with pm.
I suggest at your check ups you always go with a list of questions. If these medics are reluctant to answer then you might gently remind them that you are paying them for a service and it is your right to know everything. They have no right to use you as a test unless you give permission.
By the way, Happy Christmas and hope that the new year brings you better heath.
Alma Annie

Solution

by ElectricFrank - 2012-12-24 08:12:13

I never leave the clinic without a copy of the Initial Interrogation and Final Report. The Medtronic Final Report has a page that shows a summary of all the settings with a >> symbol next to any that have been modified. While I am still sitting in the programming room I look at the report. They have learned to discuss any changes with me before making them.

NOW, the main issue is this: If you use terms like "My doctor did XXXX to me", or "My EP never tells me anything" the you are the problem. At least in the U.S. there are Patients Rights that give us access to the information. If you accept otherwise, then you have nothing to complain about.

I realize that it is hard to face a medic in a green coat and insist, but it is often necessary. By the way I always try the gentle approach first, but am always ready for the works if need be.

best holiday wishes,

frankj

Never

by Many Blessings - 2012-12-24 09:12:13

No, my PM tech has never made any changes without my cardio doc & PM tech explaining every move they plan to make. I always get to make the decision whether I want it done or not.

They make suggestions and explain why they think it would be a good idea, but bottom line, it is my decision whether or not to make the changes. If I feel crummy after any changes, they change them right back, without any hesitation, period.

I'm like Smitty. One bad setting(s) change can knock you on your butt and make you feel just horrible! A good change or changing them back can make you feel absolutely wonderful!

I'm concerned they did this "test" on purpose. It actually makes me mad. Why would they think that was okay to do? From now on, you tell them you want to be alerted of ANY changes they plan to make or actually make. If you feel icky at all, tell them as soon as possible. It may take a few changes to get it right. If not, have them change it back to where it was set at before. EVERY setting, even if it doesn't seem like it would make a difference, change it back.

Like Electric Frank said, make sure you get a print out of what your current settings are, and what changes they make. Keep the copy where you know how to get to it fast just in case you need your settings changed again, or changed back to where they were. It is SO important you have that information. Luckily, someone made that suggestion to me when I first got my PM.

I have a St. Jude CRT-P, and I thought that any tech would be able to pull up my history (setting changes, etc.). They cannot. It is specific to the techs machine (here anyway). When another tech tried to change my settings back (my tech was out of town), he explained he could not pull up the history of what they were prior. Your doctor should have a copy in your file. Ask for a copy now, and another one any time you have a PM check, whether your settings are changed or not.

Also, when you read the report, as confusing as it is, it clearly states if any changes were made or not during that check. Don't leave that office without knowing what was or wasn't done.

I wish you all the best. If they ever do that again, I'd change doctors! That still makes me mad.




Thank you for input

by photographerrn - 2012-12-25 03:12:49

Thank you for all of your input.
I am a RN, & I do always ask at what percentage my chambers are pacing, battery life, etc.
Informed consent is very important in the medical field. And all hospitals are going to these sayings of "right patient, right to know", etc.
I have a rare disorder & I am not passive in my care by any means b/c I have doctors that don't know how to treat my condition. I do take my health & care in my own hands b/c I am losing faith in the medical profession, & I hate saying that being a nurse.
I more or less was asking if anyone has had changes made w/out their knowledge, & if it's "legal". And I am pushing the issue b/c I don't want this to happen to another patient. A lot of patients assume the doctors know best, & they don't.

legality

by Tracey_E - 2012-12-25 09:12:10

The pm settings are a prescription so I don't think the dr needs anyone's permission make the changes. It's not right changing without telling you, but I don't think he broke any rules. Definitely have a chat with him.

I'm with...

by donr - 2012-12-25 09:12:52

...Frank & Tammy - or is it Tammy & Frank.

There's Heck to pay if they change anything w/o my approval. There's also a Q&A period after the session when I go through & review the download.

The only way you learn what is in that download report is to sit, read & ask. And it can be mighty slow at first while you learn the jargon & what it all means. It is definitely a do it yourself course in EP.

Don

all of the above

by Zia - 2012-12-25 11:12:56

I agree with the rest of the guys. You have a right to know what's going on and may have to insist upon it. If they are unwilling to give you the info and get your consent before making any change, then you need a new cardio. I don't know where you are, but in the US the phrase "informed consent" trumps all other issues except in an emergency. But you sometimes have to insist pretty firmly.

all of the above plus

by IAN MC - 2012-12-25 12:12:40

The first thing I say at every interrogation is " Before you make ANY changes I want to know why and exactly what the changes are !" . They very readily accept this . I think too many people have a " Doctor knows best " mentality.

It is our body .....we have to be in charge... if we don't set the ground rules at the outset they will assume that we are not that interested and that we are happy to leave it up to them,

Cheers

Ian

Take charge of your medical

by ebfox - 2012-12-25 12:12:47

Ian nailed it. Way too many people just accept whatever a doctor says or does (sometimes to their own demise).

Websites like this one help educate you as a patient and an educated patient will demand better and more effective treatment.

When I first read your post, my first inclination was to tell you to change doctors, however if you have been passive, you will get the treatment you allow. As others have said, demand an explanation of everything they are doing and have done. Some doctors hate this (those are the docs that you leave). Plenty of doctors welcome it- those are the keepers.

Merry Christmas,

EB

Prescription? Really?

by donr - 2012-12-26 05:12:33

They may well be able to write one w/o our permission, but we do NOT have to take it! They can direct any procedure they want & we do NOT have to submit to it.

I think were it to ever get to court that changing a setting w/o the host's permission would constitute performing a procedure w/o consent.

Don

Damned cheek!

by shirley d - 2012-12-26 06:12:03

You are not a slab of meat to be experimented on! You are the only one who knows how you feel. They should be guided by your description of symptoms etc. If they disagree with you they should explain why.
I have acctually had a tech come back to me after taking the readings to "his Lordship" for perusal with instructions to turn the rate response back on ( we struggled for ages, untill it was turned off as I was going into sleep-mode while studying -I must sit very still!) and together deciding to ignore the instruction - I sometimes think the techs are more clued up than the cardios on the functioning of the PM or are irritated by someone honing in on their territory - your heart.
I would be furious!
The best advice has already been given above. Get the print out and ask them to go through the changes with you before you are ubplugged!
The biggest part of any debilitating syndrome is lack of control. Take it back.

Good luck
Shirley

Agree with don

by IAN MC - 2012-12-26 08:12:56

I have always regarded a prescription as a "suggestion" from the Dr . I have politely declined their suggestions on several occasions ...only I make the decision whether or not to swallow something . I'm not willing to be force-fed in restaurants either.

Ian

I'm not a doctor or a lawyer but...

by Goose Goose - 2013-01-01 03:01:59

I like to stay out of trouble by saying "I'm not a lawyer and this isn't intended to be legal advice" so...

I'm not a lawyer and this isn't intended to be legal advice.

I typically get my care from the VA and have had real problems getting tested for Chronotropic Incompetence (CI) which I think I've had for over 6 years now. Last month I was finally able to see an outside cardiologist to get tested. The doctor seemed to be going for the record to see how much money he could suck up in the least amount of time. He had me take 5 different tests - all done in his office - including a treadmill test (which is used to diagnose CI). All the tests came back negative so I requested copies of the tests including the original machine output - not just his written report. (as a side note - he didn't actually perform the test for CI. He mostly performed tests that I had already done within the last 30 days at the VA.)

This doctor seems so scammy that I decided to read the statute (Florida 395.3025) which assures my access to my medical records.

In Florida, they have a right to bill you for making copies of your records. I often read legal information in cases like this and I read the bill in great detail. I determined that although they could bill me for copies, they could not bill me for the time to compile the records to make the copies. Separately, I had the right to access all my medical records. What this means is that I have a right to see them but not to get free copies of them. That's not explicit though and the office staff (and the doctors) typically only know what they're told and nobody tells them that they have to 'unfile' and show you copies at no expense.

Also though, they have a reasonable amount of time to provide you with the records which is up to 30 days. They also have to give you reasonable advance notice and provide a reasonable time for you to review them so they can't call you at 4:45 and say that you can see them today but they leave at 5:00.

I also was admitted to a hospital via the ER last week. They constantly tried to give me the wrong medications and initially denied me prescribed pain meds. Upon checkout, I requested ANY records from my stay. I like to review reports and verify there's nothing inaccurate or that they state they did but didn't do such as test. I was told that I could request the records downstairs but they close at 5:00 and it was about 7:00 PM at the time.

While getting a pacer checkup once a nurse told me that if I kept asking questions they would have to be there late and "someone" would have to pay for the overtime. All I requested was what settings have been changed in the past few visits. That information simply "isn't available" was the response I got from her as she was sitting at the records computer.

Medical "professionals" can make it difficult for you to get information in many ways. It's built into the system. If you have a doctor/pacer tech who provides you with a copy of the report, I would stick with them. I don't know if they're required to tell you what they're doing before they do it. My pacer settings have been changed many times without anyone clearly communicating to me what was done.

If you piece all this together, (in Florida) they have 30 days to tell you what they've done. They likely have no clue that you have a legal right to view your records and can use your phone to make copies at no charge. Based on my research some or many office staff don't know that you have a right to copies of the original machine output. Also, they are not required to transcribe reports written in the doctors handwriting.

My best suggestion would be to try to get a good doctor first and if you can't do that, be prepared to scream and fight to get information that's legally and morally yours.

I may be ranting a bit because I've been banging my head against the wall recently because of my pacer, but as a final point, because of laws that are coming into affect during this year, you will have more access to your data. I can now output my full medical history (records are still being entered throughout the year) from the VA's system using the Blue Button initiative and store that data securely using Microsoft's HealthVault. From it I can email a link to any care provider that gives them limited access to my records and for a limited time. I can also import my med list into systems such as SurveyorHealth and do effect modeling using the government's NDDF Plus database. I can also now manage my meds and conditions myself using a variety of apps on my phone that help manage my sleep and allows me to keep every single lab and test report result securely with me. The report for the possible side effects from my combination of meds is 18 FEET long. I couldn't possibly sit with my doctor and review that.

Medical care is more-and-more becoming a do-it-yourself aspect of life. I'd suggest doing whatever is necessary to have copies of all your medical conditions, meds, labs and test results but they're only useful if you have a doctor that acknowledges and respects the data.

Keep your ticker ticking and good luck!

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I've seen many posts about people being concerned about exercise after having a device so thought I would let you know that yesterday I raced my first marathon since having my pacemaker fitted in fall 2004.