Cardio surgery and Quality of life

blueberryforsal

For context, my dad had two valve replacements many years ago that seem to have been a factor in his dementia. The valve in his first surgery was crushed by scar tissue so his case was written in medical journal and the cardiology department at Vanderbilt (which is local to us) is really invested in his care. About a month ago, the Dr that did his psych eval told him that although he compensates well now, his memory has had serious decline and that in about a year or two, he’ll need serious care. I told her that I worry the other drs are missing it because he seems pretty normal during short appts and asked that she flag it and send notes to his other doctors. Yesterday, we went to the afib guy who told him that if he has another surgical procedure, he can come off blood thinners. They would be putting a plug in an appendage on his heart and it’s done through catheter. So theoretically it’s minimally invasive. My dad asked the doctor if it would extend his life. And the doctor was very excited to tell him that it absolutely would by many years. My dad said of course, that sounds great. What the doctor missed is how many times in the waiting room I had to tell him why we were there and who he was seeing. I also had to tell him several times that he was only seeing one doctor at a time. I don’t know what to do. I think his main cardiologist will tell him it’s an unnecessary surgery like he did the last time the guy brought it up. But I know that I’m gonna spend the next several months explaining it to him over and over again. I don’t know what to do. How do I get the doctors to take his dementia into account when developing plans without stepping on my dad’s toes about being able to make decisions about his own care? I’m worried that they’ll keep his body physically going because he’s an interesting case, not paying attention to the fact that he’s checking out mentally.

H1235

Do you have access to an on line healthcare portal for him. I have found that is an excellent way to keep in contact with doctors. At moms last sleep dr appointment for her cpap the doctor went into great detail explaining how to customize the settings on her machine. There is no way she should be messing with these settings. I know that’s nothing compared to suggesting heart surgery, but still it boggles the mind that they don’t know their patients better. Before her next visit I will send the doctor a reminder that mom has dementia. I would be furious if I were you. Grr! When we went to a lawyer to have the DPOA (you will need this if you don’t already)done she also recommended a living will. The living will lays out your loved one’s wishes regarding medical care. Things like a DNR, feeding tubes, etc. if he is able this might be a good conversation to have sooner rather than later. By getting it all out in the open, talking about it and getting it in writing you won’t have to have the conversation again and you won’t have to guess his wishes. I’m very glad mom had one done. This can also be added to his medical files. Hopefully his doctors would read it.

harshedbuzz

@blueberryforsal

Your experience with the medical establishment is not unique especially in areas that are well-served medically offering patients not just specialist care but subspecialists. This can lead to non-holistic approach much like the 10 Blind Men and the Elephant with each knowing one thing really well but not getting the bigger picture.

You are very wise to be thinking protectively about your dad's current quality of life and likely outcomes of future interventions as his dementia worsens. Some folks here caring for LOs without other significant life limiting conditions not-so-secretly envy those who have an exit ramp available to spare their LO the journey into the final stages of dementia.

Your next steps are going to depend on your standing legally. Are you dad's healthcare proxy/DPOA or guardian and responsible for making these decisions? If you aren't perhaps you want to make that happen asap.

Your dad's stage of dementia and his wishes from the time before dementia play into this as well.

The mantra I adopted in considering medical care for both my elderly parents, one with and one without dementia is— what are we going to do with this information? This takes a lot of routine testing and specialist visits off the table. In terms of treatment for dad who had dementia, we considered only those that supported quality of life— we ditched metformin, and statins as well as his allergist, retinal specialist and cardiologist in the middle stages but made sure his COPD and his moods were well controlled. We treated his prostate cancer because it meant a twice-yearly IM injection that could prevent the pain of bone metastasis.

Similarly, I have a friend whose mom developed dementia around 90. Her mom had been adamant that she would no longer have mammograms after age 80 as she would elect not to treat breast cancer. Around the time her dementia was diagnosed, she also developed breast cancer. My friend made the decision to honor her mom's wishes and arranged comfort care and hospice only.

It sounds like they're offering something like Watchman which is considered minimally invasive but would still be a considerable undertaking for a PWD. Given that there are oral medications that serve the same purpose, it would be a hard sell for me even with the increasing fall risk in dementia. It sounds like his primary cardiologist is on the same page as you are, so maybe it's time to cease the consults with the surgeons entirely and trust his care to his PCP and cardiologist as needed. If your dad has any implantable devices like a pacemaker or ICD, you might want to have a conversation (without dad) about deactivation/battery replacement ahead of it becoming an urgent issue.

Good luck with this— It's a lot to have to think about.
HB