Should mother-in-law with dementia have TAVR (heart valve replacement) surgery?
My 89-year-old French mother-in-law moved in with us about three years ago. Because she has aortic stenosis/ congestive heart failure, the cardiologist is recommending that she have transcatheter aortic valve replacement surgery (TAVR). He mentioned that they would have to use general anesthesia. She is legally blind and very hard of hearing; besides heart issues she doesn't have major health problems such as diabetes or kidney. She is a smoker though. My big concern is that MIL has moderate dementia and I fear that the procedure could make things worse on this front. As I mentioned in previous posts, she does not qualify for Medicare/Medicaid and we would have to pay for skilled nursing care if she needs it. It's not open heart, but it's still a delicate surgery with associated risks such as stroke and requiring a pacemaker. Do any of you have thoughts or experiences with surgery on elderly folks with dementia?
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Does she have a different specialist who manages her dementia? A neurologist or geriatric psychiatrist? If so, I'd discuss this with them.
Cardiologists focus on fixing hearts. That is their life mission. I don't blame this doctor for recommending this "solution." But I think you need to take a broader view with a goal of maintaining quality of life and dignity for MIL. Many doctors, especially geriatricians, do have this broad view. It doesn't seem to me that this cardiologist does.
I highly recommend the book "Being Mortal" for a very insightful look at what matters most at the end of life.
Plus I also agree that cardiologists, and any kind of specialists, are frequently focused exclusively on their specialty. They do not always see or process the "whole picture." I've actually found that many specialists in general are very uninformed about dementia. If your MIL has a GP, I'd definitely recommend talking with him or her, and if you haven't already, get MIL a referral to geriatric psych before you make any decisions about general anesthesia.
Not that it matters, but how would this surgery and hospitalization be paid for? It would likely include at least an overnight in the CCU.
But is anyone apart from the cardiologist recommending this? I'd talk it through with her PCP/GP at the very least.
There is not much else you can do without invasive aortic valve repair. The blood in her heart now is mixed - oxygenated & unoxygenated due to the faulty valve thus her body is not getting the oxygen it needs to continue to perfuse her organs - brain included.
The risks are enormous. If you feel the surgery will improve her quality of life after surgery then go for it.
If not, your choices are slim. You say she has dementia now - most likely this will get worse after general anesthesia. Could be much worse.
I don’t know if I would put my mother through the surgery, to be honest not because it may not be successful as it probably will be to fix the immediate problem; it’s the after effects I fear. So my opinion would be a “no”. Unless you and your family accept that she may very well not make it & it may hasten her death.
I wish you peace with your decision.
Does your MIL have an advanced directive? What does it say?
My mom's said "no extraordinary measures" which is terribly vague. When mom developed heart block, we talked to the cardiologist, who told us that a pacemaker was not an extraordinary measure by anyone's standard.
Something to consider when talking to all of the docs. Have you read Atul Gawande's "Being Mortal"? Great book for making you think about how to approach these problems.
I mentioned CCU before: my husband had open heart surgery to replace his aorta and aortic valve when he was in his 50s. As he came out of anesthesia, he attempted to pull the ventilator tube out; the two nurses in the room prevented that, I would not have been able to. He was also quite wired up all over his chest for telemetry for several days after the surgery; will MIL do well with that?
Just WHO would be paying for this surgery, if your MIL doesn't have Medicare/Medicaid????
To MACinCT, the cardio said if we do not do the procedure, her prognosis would be less than a year. The procedure could add a couple of years or more to her life.
Thanks as always, BarbBrooklyn! We do have an advanced care directive in place - it's a standard CA form - Choice Not to Prolong Life: I do not want my life to be prolonged if (1) I have an incurable and irreversible condition that will result in my death within a relatively short time, (2) I become unconscious and, to a reasonable degree of medical certainty, I will not regain consciousness, or (3) the likely risks and burdens of treatment would outweigh the expected benefits.
She recently had a hospitalization when her lungs filled up with fluids and yes, she was not a happy camper with the wiring, and also pretty miserable about having to wear a hospital gown. She continuously asked us to bring her cigarettes!!!! She is not the model patient.
To jeannegibbs, thanks! MIL is not currently being treated by a neurologist. Her PCP referred her to a neuro; however, my husband has not rushed to take her due to the fact that she has such a strong aversion to any medications and tests. I contacted a neuro who specializes in dementia and Alzheimer's that was recommended to me by the Alzheimer's Assn. - the wait though is several months. When I mentioned the dementia to her cardiologist, he said that the surgeon who will perform the procedure may want to bring on a neurologist for tests. MIL blames her current meds and past tests (MRI) for causing her a host of problems including sleep issues and constant noises she hears that resemble a washing machine.
"The procedure could add a couple of years or more to her life." It could, huh? And how often does it do that? 50% of the time? More? Less? I'd press this issue.
How likely is it that she would cooperate with the rehab?
The tinnitus may be a result of heart meds.
Does MIL have a good PCP?
You say the dementia is "moderate." Do you know what kind of dementia it most likely is? Can you discuss her case with a doctor who specializes in dementia?
jeannegibbs, you ask great questions, don't have the answers but will go with these questions to future visits and make sure they get asked. I get the sense though that cardiologist is not big picture regarding other aspects of her health, so we need to have a discussion with a good internist/neuro.
It really is best if the OP's family gets a detailed risk vs. benefit discussion with more doctors than just the cardiologist.
I mean, I'd tend to go for the non-interventionist side too; but we don't know better than this particular lady's informed medics.
It actually wasn't primarily to pace her, it was to synchronise her heartbeat better (it gets very technical and isn't relevant). But it did also pace the heart - whether or not that came to matter later on, who can say? Its impact on her mood and energy levels and cognition... again, hard to say. I'm not sure it was worth the £15,000 it cost the NHS. I'm not sure - here's an interesting debate! - whether we'd have accepted the cardiologist's recommendation if mother had been paying for it. Or who would have had to make the decision, indeed...
All things being equal I think we were right to go ahead and it probably was worth it. But the TAVR, unless they're doing the subclavian route, may be a lengthier or more onerous procedure, I just don't know.
The aortic stenosis will be a problem. Correcting it may improve the blood supply to her brain. That will not restore brain tissue which has already been destroyed by the vascular dementia BUT it will help to slow progression and it will promote plasticity - the brain's ability to create new pathways to replace those which have gone. Plasticity in 89 year olds is pathetic compared to that of younger people, of course, but it is still there. New pathways do slowly get made.
Seriously, get a big piece of paper and put down all the pros and cons. Then go over them with a qualified medic. And do read 'Being Mortal' - it really is consoling when you have decisions like this on your mind.
You can't ever be certain of being right, but on the other hand as long as you genuinely are doing your best for your MIL you can't be wholly wrong, either. I'm sorry, I know what a tussle it is.
The major drawback is it means no more MRIs, but then maybe that isn't such a drawback!
I appreciate that MIL has moderate dementia.
All the same. DH still needs to tell her as much as she can handle about the plan and gauge as well as he can how she feels about it. Because if she says "no fear, I don't want to run on batteries"; or if she says she's tired and she's had enough of being messed about by doctors; then you're off the hook. It's a valid no.
Last year my FIL (now 90) had an emergency TAVR. He appears to have mild-to-moderate dementia (undiagnosed, because both MIL and FIL resist diagnosis, and yes, the "children" have tried, and are still trying, to persuade them to get a full evaluation for him).
He did ... great! He's now stronger physically. As for cognition, well, there was some *slight* improvement, and he holds steady to this day ... although he definitely still has deficits, and the current steadiness will not hold forever (or even for long).
It's such a carpshoot. TAVR is incredible. Right now, it's considered experimental, but from what I can see, TAVR *should* most likely be the go-to procedure, with open-heart being a Last Resort to be used only under specific circumstances.
BUT ... BUT ... this is a tough decision. For my FIL, TAVR was the right way to go -- this time. But then, he has few other debilitating conditions, is still capable of most ADLs, and, since birth, he's always been One Stubborn Dude (insert cheers and sighs here).
So MUCH depends on the patient's whole picture: physical, emotional and cognitive. Our generation has been plopped into uncharted territory. We can only do our best, with our loved one's reality firmly kept in mind.
If you have a chance to see the doc with her, can you please tell him that she refuses to give up smoking, so what is the plan there? perhaps he will change his mind about the suitability for surgery. When one University doc realized fil was uncompliant with his meds, still, he immediately took fill off the transplant list. Whew.
I just finished reading "Being Mortal" by Atul Gawande, and also want to thank the many posters who recommended it to me. It is such an excellent and insightful book. MIL's docs seem to be more in favor of the procedure than in your mom's case, but she was never tested to see what type of dementia she has. Hubby is still more in favor of the surgery than not, but at least they are taking their time to decide.