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Twinflower1 Asked January 2015

I've been asked to consider not replacing my Aunt's pacemaker because she has a DNR. Has anyone else faced this?

My Aunt is 95, in stable health, with some dementia and memory loss. She requires a companion (private pay) because of advanced macular degeneration and memory problems. She is also in an assisted living facility so she has checks at night and medication management.
She has had her pacemaker ten years and it needs a new battery. The cardiac unit at the hospital called me and asked me to consider not changing the battery.
They told me to talk with her doctor and the other family members to decide.
She is not pacemaker dependent, but I was told her pacemaker helps correct the electrical signal to the heart one or two times per 100 beats. They expect falls and possibly injuries from no pacemaker.
Basically, they provided a life sustaining treatment that they now want me to consider removing it. How does anyone make this decision? I love my Aunt. I enjoy my Aunt. She is loving, caring and cracks jokes constantly. Her caregivers are loyal and loving and go to work to have fun! They laugh all day and love on my aunt as if she were theirs. She visits with other residents where she lives and participates in music and scenic drives. She also has pain from a hip replacement that has gone bad, and is in a wheelchair except in her room. She is frustrated because she can't remember why she can't see. She has expressed not wanting to live, then almost instantly shifts to humor and wants to go do something. She confided to me five years ago that she wasn't sure she made the right decision to get the pacemaker. But she was independent and living at home at the time and I remember she didn't give it a second thought. I am guardian, health care power of atty and durable power of atty. I have been closely involved with her for the last six years taking care of every aspect of her care and financial matters. There is plenty of money, but it's disappearing fast. I feel that my decision will cause her pain either way I go. Prolong a life with immediate, present small joys and pain, or authorize the possibility of injury and death which goes against every fiber of my being. Does anyone have any wisdom, experience or advice? Thank you.

Dyingisok May 2017
Having been thru this for the last 7 years with my mother, I would recommend allowing her to have a natural death. My mother's pacemaker was replaced at age 97. She is now 103, no longer able to do almost anything for herself. Her age related dementia leaves her confused in time and place. I can't express in a few short words how sorry I am that I allowed the dr to replace her pacemaker. And now he refuses to turn it off. You, the caretaker, will think you can't take another event, then you get another call. We are born, we live, and it is very normal to die. It is the normal way of life, trying to make it last forever is not normal.

Dyingisok May 2017
Also, a DNR only means do not resuscitate if the person quits breathing or heart stops.

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Dyingisok May 2017
Having been thru this for the last 7 years with my mother, I would recommend allowing her to have a natural death. My mother's pacemaker was replaced at age 97. She is now 103, no longer able to do almost anything for herself. Her age related dementia leaves her confused in time and place. I can't express in a few short words how sorry I am that I allowed the dr to replace her pacemaker. And now he refuses to turn it off. You, the caretaker, will think you can't take another event, then you get another call. We are born, we live, and it is very normal to die. It is the normal way of life, trying to make it last forever is not normal.

flowgo Jun 2015
The dnr is often used as an excuse to not only not do cpr but to not do anything. It is really abused these days

terryjack1 Feb 2015
Jeannegibbs is correct, a pacemaker will not start a stopped heart, a pacemaker regulates the heart rhythm, but it needs replacing every so often. If it's not working properly, the battery has died then it won't do the job it was intended to do. Your aunt will have an arrhythmia that could lead to death. This would be questions to ask her physician

jeannegibbs Feb 2015
MadisonMike, that is not how a pacemaker works. My husband died with a pacemaker. It did not need to be removed or stopped. A pacemaker keeps the heartbeat regular. It does not revive a stopped heart.

terryjack1 Feb 2015
End of life decisions can be difficult and everyone has different opinions and beliefs. What does your aunt say about battery replacement? She may not want this extra measure. You must know that making such a decision is not always easy. I look at quality of life. Is there quality there? What are the risks of the surgery? What does her primary care physician say about battery replacement? Given your aunts age, her dementia and her functional level, she may do well with a battery replacement, but does she want it? Making such decisions are very personal, it sounds like your aunt is able to still enjoy some things life has to offer, but what will happen if her health declines? What do her advance directives say? If she's a DNR, then she probably doesn't want 'heroic' measures to save her for a life of misery. Ask her physician is a pacemaker/battery replacement is a heroic measure.

MadisonMike Feb 2015
My understanding about a DNR and a pacemaker is that with a pacemaker even at death it will continue to do it's job ( to stimulat the Hart). To me this looks like a form of resuscitation and even though there is the DNR this continuation of stimulation over rides it. If there is a passing with the pacemaker still working at that moment of death you would have to do what is equal to pulling the plug, have the pacemaker removed at death and would a doctor / hospital do that.

BarbBrooklyn Jan 2015
Twin, I'm truly astounded that Aunt's NH thinks that way. We ended up agonizing over a pacemaker last summer for my 91 year old mom who has vascular dementia from a stroke and had survived surgery for a broken hip. She's had a DNR and DNA for years. Her heart's electrical activity dropped and couldn't be brought back up to normal range ( it's called heart block, I believe) after a fall. We were clearly told by everyone we spoke to at the hospital that it is not considered an extraordinary measure by anyone anymore. We presented the idea to mom who said that she wanted it. When she was readmitted to her NH, they were like, of course you did the pacemaker, why wouldn't you? Just wanted to share that with you, I believe you are making a good decision.

vstefans Jan 2015
Honestly - I think your facility is wrong to try to limit your choices like that. We may not want burdensome or invasive treatments and certainly don't want futile treatments, but it may not be our goal to just get things over with as quickly as possible either. I faced that in hospice where they did not want to give my mom her Sinemet and were just going to do phenergan and a narcotic around the clock and I had to insist we were not going to do it that way. Sinemet allowed her to swallow and feed herself and not have so much tremor, and we wanted to have some grandkid time for her, and make a few more memories if we could. Plans should not be so cut and dried, "violation" and "permitted" just seem like the wrong words. I can see forgoing potentially curative treatment for cancer, with all the attendant medical issues and side effects being required to be on hospice, but not just normal maintenance for a pacemaker! And now that I am thinking about it a DNR does not = hospice. I have heard of facilities that require DNR as a condition for residing there, and I really think that is wrong enough to change facilities if they can't let you temporarily rescind the DNR just for the surgery. I don't mean to put pressure on you or your aunt in a tough situation, that's just my $0.02 and what makes sense to me. Sorry you are going through such a hassle!

Twinflower1 Jan 2015
I am very grateful for the answers to my question. I am very willing to accept that the battery for her pacemaker is about her quality of life. I can't stand the thought of her having falls and being scared. The distinction between the defrib and the pacemaker helped a lot, Jeanne. Thank you. And I really appreciated the heart of the matter "trying my best" pointed out.
I will distill this the best I can and I will talk to my aunt. She can track a little bit on some days, and I think she will understand. She will immediately forget the conversation, but I have had success going over it again at another time and again at another time and if she ends up with the same answer, I can be pretty sure it's what she wants. I know her well enough to know how she thinks and I agree she needs a chance to try to understand and decide for herself.
At the facility where my aunt lives, this issue arises and the pacemaker is considered a life sustaining treatment and therefore in violation of the DNR. My aunt made her DNR after the pacemaker was installed. But about that time, she expressed her reservations about having gotten it. How she feels about it now I don't know. I know how I feel about it. But if she clearly understands the implications and wants it to stop, I will do what she wants. I too, would be very concerned about a dead battery left in her chest. The clinic said they would do nothing to remove it.
I am reminded again how valuable this site has been and all you wonderful people who give and sacrifice and face the most difficult situations of life and death and then take time to share and help. Bless you all.

freqflyer Jan 2015
Twinflower, your Aunt sounds like a wonderful delightful lady. My vote would be to have the battery changed if the procedure is a simple one, and won't cause harm due to her age.

vstefans Jan 2015
My vote would be to do the pacemaker. It makes sense for quality and quantity of life. Having a DNR should mean only that you want to forgo resusucitation if you stop breathing or your heart stops; it should not mean you forego all medical care, even that which may be helpful without being either futile or a huge burden. They may need to temporarily rescind the DNR to actually do the procedure, that's pretty common to want to be able to resuscitate from an anethestic reaction or other reversible peri-operative situation. Just my $0.02.

Tryingmybest Jan 2015
I agree with jeannegibbs. A pace maker is for quality of life. Before my Mom had hers put in she dealt with episodes that caused vertigo and falling. They were very frightening for her, each time she thought she was dying. After the pace maker was put in the episodes stopped. If it were my Mom I think I would lobby for replacing the battery.

homecare1 Jan 2015
Since yout aunt is in pretty good health I would talk to her and see what she has to say.

jeannegibbs Jan 2015
We faced something similar. When my husband was diagnosed with dementia (age 76) he was adamant about DNR and wanted nothing artificial to prolong his life. He had not only a pacemaker but a defibrillator. In his judgment the defib device was like having someone follow him around to give him CPR, which he no longer wanted. I was with him when he asked his cardiologist to remove it. The doctor was shocked. He pulled over his stool and sat knee to knee with Hubby. If you started to have a heart attack right now, and I could save you, wouldn't you want me to? "No!" was the prompt answer.

The doctor suggested that Hubby and I discuss this and come back in a few weeks. I said we'd been discussing it for more than a month, and only when Hubby was in a lucid period. This is what he wanted.

Well, the doctor did not agree to put him through surgery just to remove the device, but the battery needed to be changed in a few months anyway and he would do it then, if Hubby had not changed his mind.

Apparently the cardiologist gave this a lot more thought over the next months. because when it was time for the battery change and the defibrillator was removed, he came into the waiting room to tell me all went well and that "you've made the right decision."

In my husband's mind, and I guess mine too, the pacemaker was a quality-of-life device. Keeping the heart at a regular pace had every day benefits. The defibrillator was an extend-the-life device. Hence one was OK in the circumstances, and the other was against his DNR.

What are the risks from having the relatively routine battery-change surgery? What are the risks if the battery really is dead? Once you have this as clear in your mind as you can, share it with your aunt. You'll have to judge how well she understands your explanation and how much weight to give her answer, but I think if possible she should have input on this question.

BarbBrooklyn Jan 2015
If she has not been declared incompetent to make her own healthcare decisions, you should discuss this choice with her. She sounds delightful and level-headed.

BarbBrooklyn Jan 2015
DNR

BarbBrooklyn Jan 2015
Did she sign the DNA before or after the pacemaker was done?

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