Follow
Share

My 87-yr-old mom's pacemaker has a battery that is wearing out in approx. six months. She has had dementia for 7 years, and can't remember my name, but remembers I'm her oldest daughter and can hold her own in a conversation, complete with good advice. Both her primary Dr and the senior nurse at her ALF say any operation with anesthesia will cause her to lose a lot of cognitive memory and that it won't be recovered after the operation. Her pacemaker is used about one-third of the time, says her cardiologist, meaning her heart isn't totally dependent on the pacemaker.


My quandary: She's told me for years (long before her dementia really kicked in) that she felt she has lived too long. She has a living will. She has a DNR. She's not depressed - she's a very cheery person and is usually pretty happy, with a good sense of humor. But I'm concerned about doing anything to speed up her cognitive decline. I know doctors can keep people alive for a long time, but should they? Where does quality of life fit in? I'm my mother's POA and healthcare surrogate. My sibs have not helped with her care other than to visit her occasionally (well, 2 of the 3 have and they live very far away; the 3rd who lives 2 hrs away hasn't visited in almost 4 years). I haven't talked with them about this.

This question has been closed for answers. Ask a New Question.
Have you read Being Mortal by Atul Gwande, a doctor who really examines end of life decisions? My DIL had the opportunity to work with him, but passed over it to take care of her newborn instead. She says he's an incredibly compassionate man.

After reading the book, I realized that I don't want to prolong my life if I am in any stage of dementia. I'd rather not live through the fear and confusion. If mom has a DNR, she's ready to go. Why take the chance that the quality of her life will be lower after the surgery? The battery will slowly wear out, but it will continue to give her those horrible shocks to get the heart back in rhythm. Instead of changing the battery, I'd be turning it off in a painless, anesthetic free procedure involving a magnet at the hospital, with that DNR all over the room.
Helpful Answer (2)
Report

I see that I'm late to posting, but I am just now in receipt of this post by the OP. To the original poster, VofReason - your question should be directed to your mother's cardiologist with careful consideration to her anesthetist's answers.
Helpful Answer (2)
Report

I wanted to thank everyone who posted an answer to my very hard question. I know we all have been in similar situations, where the options don't seem to favor one thing or another. I've taken away helpful advice from each of you, and I thank you so, so much! You've helped outline a plan of action, and that's exactly what I needed. Sending many heartfelt hugs your way...
Helpful Answer (4)
Report

Agree with Taarna - talk to anesthesiologist and cardiologist again. Tell them exactly what you said here. Be specific in asking about alternative sedative methods for the surgery. Then have a conversation with all siblings in group phone call or meeting. Everyone needs to hear the doctors info, good and bad, and come to some sort of agreement on how to proceed. Tell siblings in advance that the meeting is to discuss a procedure - those who choose not to attend will have to accept what others decide.
Not telling the siblings will open a whole new can of worms later on and you'll be dealing with potential guilt trips - and only you know how you deal with guilt.
Helpful Answer (3)
Report

The procedure is minimally invasive. The person to talk to about anesthesia and aftereffects if the one giving it - the anesthesiologist. There are several different agents that can be used. Usually cognitive issues with anesthesia are a result of loss of oxygenation to parts of the brain - blood clots or poor circulation. The anesthesia doctor is the best person to assess the risks and let you know mom's realistic outcomes.

So, schedule the procedure. Take a list of questions for all doctors. If several doctors are not giving you good chances for positive outcomes, then it might be better to let nature take its course. My bet is that mom will do fine... and I was a critical care RN for many years.
Helpful Answer (5)
Report

I would agree to that procedure. It is very minimally invasive. Although currently it is only needed a minimal amount of time, as the pacemaker in her heart continues to wear out, it will become more necessary. The heart tissue has “pacemaker” cells that control heart contractions. They wear out and mechanical pacemakers are used. It is not like an internal defribrilator which does create a shock that patients feel. Talk to the doctor about what happens if you don’t do it. Her heart rate will likely slow and this will eventually not allow her to do activities or even get out of bed. My grandmother was 90. She was in hospital and wanted to go home. But her heart rate was 30 beats per minute due to failing natural pacemaker. So if she sat up, she passed out. I suggested that pacemaker be inserted as doctor suggested. It was. She did fine and got to go home where she passed away with support of family a few weeks later. It is a tough decision always but get all the possible scenarios first.
Helpful Answer (4)
Report

my wife has dementia and I have taken care of her for over 10 years.
she cannot talk or walk. last year she need a new battery for her pacemaker
so I had the same question what to do, the doctor told me the cost would be
zero, I made my decision as follows she is not a angry person and all other
organs were working fine. her only thing in life is the TV so I elected to have
the new bat put in. ooppppps after all that was said and do it cost me after
insurance $1500 far cry from zero.
Helpful Answer (1)
Report
my2cents Nov 2019
While cost can be an issue - payments or settlements on amount owed can be worked out. Aside from cost, did the surgery create other medical issues? Was it minimally invasive? How long was she in hospital or was it outpatient surgery.
(1)
Report
Sometimes you are "prolonging death" instead of "extending life."

Based on what you have said, if I were in your shoes, HONESTLY I would not have the procedure done.

Also, do NOT discuss it with the siblings. Do NOT.
It will not end well.
Helpful Answer (11)
Report

I’m sorry you have to make such a difficult decision. Your mom has a DNR, the pacemaker is shocking her heart back to normal rhythm every time it is needed. It’s like being resuscitated every time.
My mom has a DNR. we decided not to have a pacemaker put in for my mom (she’s 90 with Alzheimers) It was the hardest decision of my life but I know it’s the right one.
Helpful Answer (10)
Report

My husband had a pacemaker surgically implanted on July 4th this year......without general anaesthesia. He was given a local anaesthetic and a valium drip for twilight sleep during the procedure. Inquire with your mom's doctor about doing the same for her.

Good luck!
Helpful Answer (6)
Report

There’s always a risk with anaesthesia and quite rightly it’s been discussed with you. I agree that quality of life is far more important than length of time. It sounds like your mum feels that way too.

My uncle had had dementia and bowel cancer that had spread. I took the decision that he would be confused and unhappy in hospital having treatment and arranged pain relief palliative care . Despite being told he’d only have weeks - he enjoyed a further 15 months stress free mostly happy without medical intervention.

Do what feels right for your mum - I wish you both the best


.
Helpful Answer (5)
Report

My husband's gramma underwent the Whipple procedure for her pancreatic cancer when she was 85. She had no cognitive issues prior and no decline after. My friend's father underwent shoulder surgery in his early 70's and was never the same after. I'm not sure the cognitive impact from anesthesia is guaranteed or predictable, But have you actually asked your mom what she wishes? You say she can hold her own in a conversation but not sure what that means. It seems she has given you her pre-dementia answer (per your post). I think that's your directive.
Helpful Answer (6)
Report

"I know doctors can keep people alive for a long time, but should they?"

I would suggest reading "Being Mortal" by Atul Gawande before making the decision. Only because it helped me, and maybe it will help you.
Helpful Answer (6)
Report

Don't change the battery just because it's "due". The cardiac physiologists who test it will tell you what state it's in; and anyway they don't just conk out, just like that, you should get a substantial grace period for decision-making.

Having said that, your mother is enjoying a reasonably good quality of life, isn't she? She is usually pretty happy and cheery - no pain, no anxieties, no depression? That being so, if she does need her pacemaker battery replaced to maintain her current condition you should go ahead. It shouldn't, as far as I remember, require full anaesthesia: I should check with her cardiologists whether the sedation that would normally be used carries an acceptable risk compared with the risk of not maintaining the device.

Will it help clarify things for you if you invite your siblings to voice an opinion? In my view you have no obligation to discuss this with them, but if you feel the conversation would be useful and right, that's different.
Helpful Answer (5)
Report

This question has been closed for answers. Ask a New Question.
Ask a Question
Subscribe to
Our Newsletter