pacemaker replacement

My first pacer was implanted 6/11, and the battery is now reaching end of service.  At the point that its "elective replacement indicator" was activated to enter ERI mode, I made the decision not to have a second implant.  At that point, my cardiologist of six years "fired" me and refused continuing care.  Further, the Abbott Lab technician also refused to provide me with any battery status testing.  I now am in hospice without any cardiology oversight or regular pacer read-outs.  My wife and I are living in ignorance about how to cope with the uncertainties that have been imposed by both my cardiology practice and the pacer inidustry having deserted us.  My conclusion is that the term "elective replacement" is a misnomer, as continuing care will be denied to anyone making the wrong choice.


12 Comments

Sorry to read

by Tulp - 2021-09-24 21:17:03

I can only say I m so sorry to read you are in this  uncertainty. Must be quite stressful.

The absence of information about you on your profile does not give me much to answer to. I  really hope you will be able to find some answers soon.

 

 

There's a lot going on here.

by crustyg - 2021-09-25 12:34:56

There are other members/contributors here who have already decided that the current PM/ICD device that they have will be the last, and this is a decision that I understand and respect.

I have no idea how old you are and what other illnesses you have: you say that you are in a hospice.  Where I come from this is the Waiting Room before The Big Sleep: they make you as comfortable as possible for as long as possible, but this is already a one-way street.

This won't be easy for you but I'll ask you to try.  Try and consider your heart rhythm issues from the perspective of your EP-doc.  She/he didn't go into palliative care (==hospice land) but chose to try and help those who see a long-term future for themselves.  By declining a replacement PM you very clearly put yourself outside that group.  That's your right, but it's also your EP-doc's right to decline to see you again.  Contrary to many medical dramas, doctors do NOT have to treat every patient (there are some exceptions) - we're not slaves.  So while you feel that you were "fired" by your EP-doc, the reality is that you CHOSE to decline their expert advice, so there's no reason for you to need to know what your PM is doing as the battery nears exhaustion.  In many places in the world, doctors cannot/must not be seen to be doing anything that might *appear* to be assisting suicide or they could lose their licence to practice.

I'm left wondering WHY you decided to post here, about this.  Regret?  Remorse?  A plea for sympathy?  As we come close to the last days, the true reality that the end is near hits hard - like a ton of bricks.  Hospice staff are very familiar with this, and my heart goes out to you.  I've looked after more than a couple of patients in their last days.

there's a lot going on here

by westcoastjack - 2021-09-25 13:54:35

I completely agree.  There is risk of litigation from family members, for example.  Still, I continue to read that I have the right to decide not to have an additional implant affirmed by the 2018 guidelines from the American College of Cardiology (ACC), American Heart Association (AHA), and Heart Rhythm Society (HRS).  Yet, when I exercised my right, both my cardiology practice and the pacer company refused to assist me in any way.  Should exercising a right affirmed by all the key ethical guidelines regarding patient choice in this matter be followed by refusal to provide information and support that would ease near end-of-life experience?  I feel abandoned by the cardiology profession and my pacer manufacturer when I made a rightul choice according to my values.  Is there not some network of cardiologists who are willing to provide care to individuals who choose not to have an additional implant?  And, if not, why not?

What difference will it make?

by crustyg - 2021-09-25 16:59:13

When I was teaching medical students about lab tests and medical imaging, the key question that I would always ask them was 'what difference will this test make to diagnosis or treatment?'  We would then run the thought experiments 'test comes back low | normal | high' and see what difference that might make for a given patient that they had in mind.

I'm not suggesting that your decision to decline a device replacement is in any way wrong or unjustified.  What I can't see is what difference it will make given that you knew that the device was near the end of its functional life - so may not provide the cardiac support that you have become accustomed to.  Why does that become dereliction of professional duty from EP-docs/PM vendors?  I repeat, we are not slaves.  We too have the right to choose how and where we work and with whom.  How many other EP-docs have you approached to ask for their help?

Other implanted device contributors here have decided not to replace the device precisely because that course will probably expedite the end.

Is this not what you wanted, or expected?

Hospice

by Marybird - 2021-09-25 18:04:25

Hi Westcoast Jack,

I join Tulp's sentiments here in saying I'm sorry to hear of the stress and uncertainty you are going through at this time, and hope that you can get the assistance you need to come to some resolution.

As I understand hospice, ( at least from reading and experience with hospice during my mother's being cared for by hospice during her terminal cancer and death two years ago), one of the criteria for entering hospice is that a patient agrees he/she will not be treated for any medical condition with the intention of curing or improving the condition, but solely for palliation and comfort. To this end, specialists that were treating the patient to manage, cure, or improve a medical condition, once it's been determined that the condition is at a point where nothing else can be done and it's terminal ( hence the reason for hospice), may discharge the patient, leaving the care to the patient's primary care doctor, and the hospice care team. They'd be the folks to speak to about care or concerns the patient would have about medical care.

When my mother was in hospice, the hospice doctor spent much time explaining the options for care for her. The primary, and sole aim was for comfort and palliation. The doctor explained that to this end, people can still receive maintenance medications such as blood pressure and diabetic medications, can have procedures or surgery intended to keep them comfortable and minimize pain ( say, debulking a tumor, or in my mother's case, with pancreatic cancer, endoscopic clearing tumor mass from the biliary ducts to alleviate pain, etc., paracentesis or thoracentesis to clear fluid from the abdominal cavity to make the patient more comfortable, and so on, but you get the idea).

I don't know where they draw the line, I know there are diverse opinions about implanted cardiac devices and what to do with them during the end of life. In any case, I've read numerous statements saying a patient's wishes should be respected whichever way they go. It's entirely understandable NOT to want to implant a new ICD with the possibility of receiving numerous painful shocks at the worst possible time. Pacemakers, well, it looks as though their role at the end of life is debatable, whether or not they prolong life in such circumstances seems to be a matter of opinion, but the literature all says patients' wishes should be respected either way. I'd say your cardiologist probably believes there's nothing much else he/she can do for you under those circumstances, and the pacing techs/manufacturer even more so since their main role is to keep the device going and settings maximized for your everyday activities. If your ICD has reached the ERI mode- they will be unable to adjust any settings, or even interrogate it to check its status, so they really can't do anything for you at this point.

But- if you're enrolled in hospice, the go-to people would be the hospice personnel, including the physician who will be in charge of your care. Sometimes, the patient's own primary care doc is in charge, sometimes it's a hospice physician, don't know which would be the case with you, but this physician is the one in charge of your care, and can make any decisions, coordinate with any physicians or health care providers who might provide any medical care, medications, etc. you might need to make you more comfortable or to alleviate pain.

Here's a piece from the National Institute on Aging that does a good job of explaining hospice and palliative care. I hope it helps, and I wish you and your family the best:

 

https://www.nia.nih.gov/health/what-are-palliative-care-and-hospice-care

End of life care

by Gemita - 2021-09-25 20:05:04

It seems to me you have chosen not to ease your end of life experience so I do not know why you are looking for support from a cardiologist.  In any event the staff in a good hospice are more than able to manage your end of life care and help you and your family through the difficult journey ahead.  

I would suggest you might wish to consult a psychotherapist, if you haven’t already done so, who will have the experience and understanding to work with you through the painful process of your decision and perhaps to involve family members in the discussions too, since they will clearly be hurting and perhaps wanting to understand the reasons behind your decision. 

Pacemaker Club members try to support and help each other to live a better quality of life with their pacemaker/ICD.  Sometimes we receive posts from members wanting help to get their pacemaker and/or ICD removed, turned off or not replaced and will go to any length to make this happen.  Sometimes their posts are very disturbing for other members who have been through so much personal pain themselves, fighting for treatment for their heart condition, to hold on to whatever precious time remains.  While we would like to help everyone, it is not always possible, particularly in this delicate area of stopping treatment where it is likely to result in causing suffering not only to the member in question but to their family and close friends.  This is why we always recommend that the member contemplating this action seeks professional help, help which is beyond the scope of this Club.

Edited: ref your questions below, I do not believe anyone can answer with certainty how long your individual device will continue to function, or what symptoms you are likely to have with an end of life device. We are all unique with different health conditions and so are our devices unique to us.   Perhaps that is one of the reasons why your cardiology team is not willing to engage with you.  They may know what could happen (from experience) but they do not know what will happen.   I wouldn’t imagine you would be able to safely plan outings or even feel like planning outings as your symptoms increase with a failing pacemaker since you say it is your main life support system.  I note however you say you are quite healthy at the moment so hospice care is clearly meeting your needs.

I wish you and your family as peaceful a journey ahead as is possible

what difference will it make & hospice

by westcoastjack - 2021-09-25 20:07:28

My thanks to crustyg and marybird for their extensive replies.  It is true that, in making my choice not to have an additional implant, I understood what hospice would entail.  You both ask a key question:  what has been missing from hospice care that a reasonable person with a pacer in ERI would expect?  My answer is:  nothing.  I am receiving wonderful hospiice care as I presumed I would.  What I do not have with hospice is any information about the current status of my pacer that is keeping me alive.  The hospice staff, of course, know nothing about my pacer.  They call me a "unique" case.  It would be very useful to my wife and myself to have some information about whether the battery is likely to fail in one week, one month, three months, or six.  We could plan our short drives, lunches with friends, and even an overnight stay accordingly, because otherwise I am quite healthy.  In addition to the inability to schedule a few good times during this period (long or short), we do not know how the battery itself is going to fail:  catastrophically, slow downward pacing, or erratically.  This would be good to know because we could prepare for the specific nature of an anticipated failure.  Here again, hospice staff cannot advise us, cardiologists (more than one) have dismissed us, and the pacing techs will not discuss how end-of-service occurs in their own devices.  In short, we are asking for more information about how and approximately when my pacer as a life suppport system will fail.  Hospice staff have no idea, and the cardiologists and techs have refused to speak to us.  I am not asking for improved hospice care; I am asking for end-of-service information about how and approximately when the impanted device that is my life support system will no longer function..

end of battery life

by Tracey_E - 2021-09-26 13:33:41

Even if they interrogated the pacer and told you what it said regarding battery life, it still wouldn't tell you much because the numbers are all estimates. I'm on my 5th device. One said 3-6 months left for over a year. One said a year but 3 months later it had switched to conservation mode. The others were more or less what the estimate said, but the estimate is always a range. It's not like a gas tank that can tell you how many miles to empty.

You can tell if you are still pacing with a simple ecg, the pacing spikes are obvious. 

Depending why you have it, your heart could go on for a long time after it stops pacing. 

end of battery life

by westcoastjack - 2021-09-26 15:43:33

Yes, Tracey_E, I do understand that making end-of-service estimates following the interrogation of my pacer may have large margins of error.  However, the reading of current battery voltage and impedance would be much more exact.  This is the informatioon for which I have been asking.  I have not been asking for any time estimate for end-of-service.  I have been asking for voltage and impedance.  My situation is that any pertiinent information about the status of my pacer is unavailable to me, because my request for pacer interrogation is being denied by the Abbott Labs technician to my hospice case manager.  Would this situation exist if I were connected to any other form of life support?

why the end

by new to pace.... - 2021-09-26 16:30:48

  You say you are healthy. Does not make any sense unless you are in your mid 90's. To  not get your battery replaced.  Your profile tells us nothing.

  Many have said they have done that without any problems.

   Wish i had mine implanted 4 years before i did.   Would have saved  me from all the falling,  fractured bones and replaced parts.

Estimating end of life

by crustyg - 2021-09-26 17:02:12

WestCoastJack.  I understand that you are upset - angry even - but what you're pushing for can't be delivered - BY ANYONE.

If you actually read some of the responses that we are offering you, you will see that even if you could predict end of functional battery life that might not mean the end of your life.  Even if you are 100% PM-dependant you may not die at that moment.  Patients who suddenly develop complete heart block often have a ventricular rhythm of 20-30BPM and can survive for 12-24hr or longer.

None of the PM vendors can help you: their FDA licences limit their involvement with patients by the command of, or under the control of a licensed physician.  Since you don't have an EP-doc, none of them can touch you.

You are in the same position as the narrator of 'When Breath Becomes Air': a neuro-surgeon nearing the end of his training who finds that he has a terminal malignancy, and is enraged when his oncologist refuses to give him a prognosis.  When his anger subsides a little he has an epiphany.  He's in the same position as all of us: he knows that he is going to die, but not when.

Gas tank

by AgentX86 - 2021-09-26 19:10:51

Even if you did have the information you want, it would do you no more good than the time estimate you already have. That said, in the US a patent has the right to all patient records. There may be a charge for some, like imaging, but you have a right to it all. BTW, it's not required that the technician to give it to you, though most will.

You know you're wired when...

You play MP3 files on your pacer.

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