Hi all. Just a quick background...my mom has moderate to severe dementia and multiple medical issues including strokes, A-Fib, and Multiple Sclerosis. She is also pre-diabetic. She has been in a wheelchair since she broke her hip back in January but has been able to transfer adequately until just recently. About a week ago she had a bleed of unknown origin from the rectum for several days and refused hospitalization for treatment or diagnosis. She is currently on hospice so we respected her decision. The bleeding has since stopped and her blood pressure has somewhat rebounded however she is still extremely weak and unable to do pretty much anything for herself. Going back about a month...at her last cardiologist visit, they found that her liver enzymes were critically high and referred her to a gastroenterologist. The gastro wants her to have a liver biopsy under general anesthetic that will almost undoubtedly cause her further cognitive decline, however that is the ONLY way that they can rule out cancer of the liver. The ultrasound showed the liver surface was "consistent" with cancer, however they can't be sure by that method. If she were to be diagnosed with cancer, there would be no treatment per her wishes, and we would do everything possible to keep her at home until the end. It would require us paying for a lot more care, but if she were only given a few months, we would do our best to make it happen. We want her to be able to pass quietly at home if at all possible. Otherwise, with things as they are, I know that she will have to be admitted into a nursing home within a few months. It was my last resort, but she refused AL when she was well enough to go there, and unfortunately now it is not an option. So I guess the question is, does she get the liver biopsy, knowing that it may cause her to decline even further, just to see if there is an outcome that would potentially change our view in trying to keep her home longer? Or should we just let things continue to play out as they are until we're out of options?
I would present this conundrum to the surgeon and the GI doc. "The images and symptoms you are seeing are consistent with what stage of liver cancer? What is the time line for cancer in that stage, with no treatment, with my mother' co-morbidities?"
Frankly, I don't think it's wise to keep a cancer patient at home. Especially with the other issues your mom has.
I think she would be kept far more comfortable in a hospice facility or a NH with Hospice as an add-on service.
At home, you will be hiring aides who are NOT medically trained and who will not be permitted to give meds. Figuring out pain relief will be on you and other family members, 24/7.
Giving morphine to an aging, in-pain beloved parent is my idea of Hell. My cousin who did this for his mom (who had heart issues, not cancer) killed himself after his caregiving was done. Never can be sure what the direct cause was, but I don't think it helped his depression.
Have you asked hospice what they think? You know that mom will have to stop hospice care if she were to proceed with the biopsy, as they don't allow any extreme measures to be taken, while under their care. Now of course she could go back under hospice care down the road if needed.
Unless I am missing something here, it just doesn't make any sense to proceed with the biopsy. Just enjoy your mom and make the best of whatever time you may have left with her.
I would not put her through this. Is she on cholesterol medication because that will cause the rise of enzymes and shood be stopped.
I spent some time yesterday sorting out my CURE magazines, the main topic of which is cancer and anything related, and recall reading about the trends toward noninvasive diagnostic procedures. I have no idea what type of imaging devices might be needed or used, but I would explore that, just to give yourself the comfort of knowing that you've investigated the potential, especially the staging of any cancer.
However, since she's already in hospice, I would agree with others that any invasive procedure would be counterproductive, not to mention potentially painful and cause even more distress.
I do understand the need to explore what options exist, and that's why I would really try to determine if the test can be done by noninvasive procedures. And frankly, it seems this particular gastro doctor is pretty set in his/her ways, and not flexible.
I'd be interesting in hearing from the medical people here about the potential of a noninvasive biopsy.
(I did some checking to see what I could find; these articles might be helpful iin your determination:
1. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8214024/
Although noninvasive procedures are existent, a biopsy is still the gold standard.
2. https://labblog.uofmhealth.org/rounds/alternatives-to-liver-biopsy-when-are-other-tests-appropriate
This is a better and more diverse article, addressing limitations and benefits.
U of M is one of the top medical complexes in Michigan, and it's also a teaching hospital.
3. https://hrjournal.net/article/view/2197
This seems like a good article, comparing the available options.
In our situation, our choice was residential hospice, and it chose to be the kindest course.
Perhaps she could be considered for in home hospice care with as much extra support as possible?
Hoping you who love her can provide comfort and peace.
I'll never forget a gentleman named Marty who lived in AL along with my mother a few years ago. He wound up having cancer on the tip of his nose and his son agreed to treatment which he SO regretted afterward. His father was in SUCH a level of pain and discomfort, and the radiation/chemo caused such a decline in him that he wound up passing away a few months later. The last few months of his life were ruined by the cancer treatments instead of being enjoyed with his family members.
There is no point in getting your mother a liver biopsy if you don't plan on getting her treatment if it turns out to be cancer. Doctors, in their infinite wisdom, always suggest biopsies b/c they feel every life should be extended, no matter WHAT. Apparently they've never had a loved one suffering with dementia to deal with and witness the extreme decline of.
The kindest thing we can do for our mother's is let them pass peacefully and with as little medical intervention as humanly possible now that dementia has destroyed their lives.
Wishing you the best of luck with all you have to deal with.
We were fortunate that my sister's team of doctors were much more realistic, and told us frankly when she was dying that the cancer has metastasized so far it couldn't be controlled.
Ask the gastrologist what the justification is for this onerous and invasive investigation. And if there isn't one... FURGET it.
How is your mother doing now? - is it proving manageable to keep her comfortable and in good spirits?
I get wanting to know so you can have a plan of attack (so to speak!) in your head. It was very frustrating to me with my mom, because CHF is so much a "two step backwards, on step forward" sort of illness. But sometimes this is the hand we're dealt, and this is what we have to live with. It sucks, I know. If you decide to go ahead with the biopsy, just be prepared that you might not get the information you're hoping for...you might want to talk to her doctors about the information you're looking to get if you do the biopsy, and how likely is it that they'll be able to give it to you if the biopsy is done.
Good luck!