Should mother-in-law with dementia have TAVR (heart valve replacement) surgery?

Hi everyone. Thanks so much for all your insights and support. I just wanted to update you on where things are with the TAVR surgery for my MIL with dementia. Though the two cardiologists in town were advocating for surgery, my husband was finally able to get to speak to a family member in France who happens to be a cardiologist and understands my MIL, as well as her total health picture.

He said at her age of close to 90 he wouldn't push doing a valve replacement, especially with the combination of other health conditions (macular degeneration, dementia, near deafness). He said you have to look at the overall quality of life, and the procedure could make her other health issues worse.

Both my husband and MIL were so relieved to have this opinion - it made their decision to not proceed with the surgery feel comfortable and right, especially spoken from a family cardiologist who knows my MIL very well. Sometimes doing nothing is the best decision. My MIL was looking to my husband to make the decision for her, and it's been very stressful for him to have this weight of feeling his Mom's life is in his hands. And he as a good son wants to do everything in his power to help her.

When specialists such as a cardiologist tell us that a procedure can help us or prolong life, they often are focused on one specific organ, not the total health picture of an elderly person. And we put so much trust in them. I wish doctors would look more at the total elderly patient, ask the right questions, take into account the dementia patient's quality of life. These are complex decisions and patients, and i wish our current doctors were better equipped to help us.

This cardiologist in France said that eliminating salt and eating a healthy diet would be the best thing in the world for her to keep her going.

What a difficult decision for your husband to make.
If he and she do decide to move forward please make sure that everything is in order regarding what to do in the event it goes south- DNR, Molst , or Advanced Directives so hubby is not caught unprepared to make those hard decisions quickly while under stress.  
Keep us posted & good luck!

My 87 year mother has atrial septal deviation and CHF is on oxygen 24/7 and her cardiologist recommended no surgery to fix heart at her age.

Sorryselma, isn't that a great book? I specifically took time to read it in April during a long weekend away after seeing so many recommendations of it on this site. I was very moved by the author's descriptions of his own father's slow decline and death. I'm glad I had a chance to read it before any similar sort of crisis in my life.

Thank you for your insights, jbwriter. It sounds like you are doing the absolutely right thing for your mom. I think the decision is so hard because there are so many risks. I am still trying to encourage my husband to make sure it is his mom's decision, and not coming from his obvious desire to fight until the end and do everything he can possibly to do to help her as a devoted son. Sometimes doing the most natural thing seems best; medical technology may keep her heart going, but I'm not sure it would give her the quality of life that she deserves. And it may just trade off for worse problems.

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.

I faced this decision with my mother, who has vascular dementia and Wernicke-Korsakoff syndrome (alcohol-induced dementia). The cardiology group (a highly thought-of group in Pittsburgh) had its own social worker who met with me and consulted. The cardiologist said he could do the operation, but he didn't think my mother would be able to manage the rehab because of her dementia, and therefore did not want to do it. Mom's geriatrician expressed disbelief that we would even consider the operation because of the risks of increased dementia from the general anesthesia (she had just come out of emergency room/intensive care where they had done tests and discovered the valve issue and recommended surgery. The general anesthesia she underwent for these tests made her bonkers: hallucinating, screaming, swearing. was also partly alcohol detox.). This was all 16 months ago. Mom is now in memory care, still mobile, walking without help, etc. Her PCP says "No" to valve replacement still, even as mom has become stronger (though more advanced in dementia). My mother herself has said she doesn't want the operation, and luckily, she and dad already had signed advance health directives that call for the least invasive care.

My answer is "No way" as people that are elderly don't recover from general anesthesia like they did in their younger years. The associated risks are too big.

My father in law demanded more, more, more to fight all his heart ailments right up to the end. It was frustrating to us to see him fight, to pull all the strings to get one last chance...again.
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.

Just a quick update... and I wanted your thoughts. So, husband wants to move ahead and do the heart procedure even though the doctor is not clear that there is any life-extending benefits of doing TAVR on my almost 90-year-old MIL. He says it will make her more "comfortable and breathe easier." Mostly I hear doubt from her about the procedure - In French, she tells me it's very delicate. The only time she seems to favor surgery is when she experiences pain or has some difficulty sleeping, though it honestly hasn't been too significant. I tell my husband that a better option may be to look at ways to help her sleep or manage the pain instead of jumping on the surgery bandwagon. I also think given her personality it will be a struggle and she will be fighting the poking and prodding all the way. Even in a recent hospitalization for the congestive heart failure wearing the hospital gown made her miserable, so I can't imagine how she would react to the discomfort of the surgery. The cardiologist said she has less than a year with the current aortic heart valve. Replacing that valve means GA twice - once for angiogram and another for the TAVR within a short time frame. I am just scared that we are trading for worse problems. Thanks!!!!!

For what it's worth ...

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.

Really read Being Mortal! What's important, quality of life or length? I know I don't want to sit around staring into space like mthr is in her deep dementia, 5 years after her cancer surgery. She was already on the road to dementia just early stage 5 when it's getting noticiable, but too far for cure to be a blessing. If it were me in my right mind, I would decline heart treatment and suffer sooner than later rather than be stuck in an ever decling mind, confused and bewildered.

Actually, there is no longer a prohibition against MRIs after TAVR. The manufacturer's instructions will detail what kind of MRI can be done with the particular model of aortic valve.

By the way.

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.

Sorry - no the pacemaker is trouble free once it's in situ. If MIL is on the slender side you will see the outline of the battery beneath her skin, but it shouldn't annoy or hurt her - she shouldn't even be aware of it except when she's washing or dressing.

The major drawback is it means no more MRIs, but then maybe that isn't such a drawback!

My mother was given a pacemaker for her 88th birthday (I'm being a bit flippant - it was her 88th birthday, but the pacemaker wasn't a present!).

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.

Do any of you know if TAVR could help if MIL has vascular dementia? Also, not very familiar with pacemakers, but this seems to be a big risk factor of this procedure (up to 20%). Given that MIL is highly sensitive to any change whatsoever, I was wondering if elderly with dementia would be distressed by having a pacemaker?

Err... I wouldn't fire a *good* PCP on the basis of that u.t.i. experience. "Better the devil you know" applies, here; unless he's been completely hopeless all the way through and that was just the last straw.

It doesn't necessarily mean exactly that, JoAnn. It can mean that the muscle is enlarged, and besides that there can be numerous reasons for the poor function of the heart - including leaky valves.

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.

Just read what transcatheter aortic valve replacement surgery is. Boy, they have come a long way in 25 yrs. I still am surprised they want to do this procedure on a person who has congestive heart failer and smokes. The flow up the blood will be better but the heart muscle is too weak to push the blood thru. I am really surprised this procedure is recommended for an 89 yr old.

Congestive heart failure means the muscle is weak right? A valve is a whole different thing. Both my Dad and MIL had theirs replaced. It has to do with the flow of the blood. So, replacing it is not going to change that the muscle can no longer do it's job. This is a long operation. My Dad had two of them. After the first he told the doctor he had problems remembering the past. (Dad was 65) The doctor explained the longer you are under the more likely there will be memory loss. A person with Dementia it would be worse. If this was my Mother, I wouldn't put her thru it. The pain alone. In a year she will be 90. She has lived a long life. Surprised she wasn't told to stop smoking but then it's her only pleasure. Let her live what time she has without pain and strangers caring for her. My Mom didn't like to be manhandled.

Thanks so much, Countrymouse. Her PCP overlooked a UTI on her labs and didn't treat it for 2 months. So husband is right now searching for a replacement internist. I am trying to help too, and suggesting one who has more geriatric specialty. We live in a small town, so not easy to find this specialization.

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.

sorryselma, without the TAVR your MIL is likely to die within a year FROM the heart problem. How likely is she to die from dementia? Because she'll still have dementia after the procedure.

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?

That recent hospitalisation is the kind of situation the TAVR should prevent.

The tinnitus may be a result of heart meds.

Does MIL have a good PCP?

Thanks for your question, CTTN55. MIL has Covered California through the end of this year. It has overall good coverage and should pay for the surgery, but her plan does not reimburse private nursing costs. And just like so many of us, not sure what the situation for affordable insurance will be in 2019. We would need to pay for any care beyond doctor visits and hospitalization out of our own pockets, as MIL has limited financial resources. In truth, we don't have a lot of reserves either.

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.

Have you considered consulting a palliative care provider? It might be a good idea to have one involved with health care decisions going forward. I agree surgeons are going to recommend surgery. It's what they do. A palliative care group should concentrate on quality of life.

My mother had TAVR over three years ago, at age 88. It was remarkable; she recovered very quickly. She didn't have dementia, though. 3.5 years later, she is quite a bit frailer, and her balance is horrible. But I can't blame the TAVR for that.

Just WHO would be paying for this surgery, if your MIL doesn't have Medicare/Medicaid????

My MIL had this surgery. It deepened her dementia, she refused to go to rehab and starved herself to death. To be honest, I don't remember if she had TAVR or open heart, I suspect the latter.

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?

Wow this is a tough decision. I would weigh the pro’s & con’s carefully. I am assuming she is symptomatic is that she gets SOB easily, has swelling of her extremities and is generally fatigued. I also assume her docs have had her on a diuretic and blood pressure meds to assist her heart in pumping.
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.

Depends what sort of dementia. If it's vascular dementia, improving her blood circulation may help her.

But is anyone apart from the cardiologist recommending this? I'd talk it through with her PCP/GP at the very least.

Just no.

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.