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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?

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So, Trendi, it sounds like you wouldn't TREAT the liver cancer, but you want it staged so that you can plan better, yes?

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.
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Trendi Jul 2021
Thanks for the reply, and yes you are correct that it is more for planning purposes. I don't want to put her through the test at all...I am just at a loss as to what to do. She wants to die at home, not in a facility, and I completely understand that. Her sitters are RN and are able to administer medication. She has only had liquid morphine once and when asked, she claims she is in no pain. At least at this point. I have asked the GI doctor the questions that you suggested and was told that they wouldn't speculate - that she would need to have the test done before they would get into anything else. In other words, no help whatsoever. :-(
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It sounds like your mom already made the decision for no more treatments when she agreed to hospice care. Why are you even toying with the idea of a biopsy, when you know that mom doesn't want any more treatments? To me it seems like a mute point to even consider the biopsy.
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.
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Trendi Jul 2021
Yes, I have spoken to hospice about it at length. They maintain that the choice is mine - they will keep her in hospice unless she is admitted into a hospital. The liver biopsy is out patient so they wouldn't be forced to drop her. With that said, they also don't see the point in proceeding with the test. Don't get me wrong...I honestly don't either. I was only thinking that it would allow me to formulate a better plan, one way or the other. I am thinking I will probably just let time take its course. If she is still here with us when the money runs out, we'll move her. I guess it is what it is.
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Hospice is allowing these tests? Usually, on Hospice you treat nothing. Thats the whole purpose. The person has agreed to no more intervention. They just want to be kept comfortable until they pass.

I would not put her through this. Is she on cholesterol medication because that will cause the rise of enzymes and shood be stopped.
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Trendi Jul 2021
Yes, so far they have allowed everything. They just said that she could not go to a physician for the same conditions that she is under hospice for. I stopped all medication at their advice when she began bleeding (she was on aspirin and a blood thinner) and it hasn't been started back yet. She did take a statin while she was in rehab several months ago, but she hasn't had it since she was released.
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Trendi, I'm wondering about switching from the gastroenterologist to an oncologist, and one who specializes in liver cancer if that's possible.   Checked out Millington on a map, and see that it's not too far from Memphis, where I'm thinking there would be more oncologists and perhaps a gastro oncologist as well (if there is such a profession).

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.
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Trendi Jul 2021
Thank you so much for all of the information and for taking the time to provide me with the research material. I sincerely appreciate it. Mom actually had all of the diagnostic tests that can be performed non invasively (according to them at least). The ultrasound of her liver showed that the surface was "indicative of hepatocellular disease" which I've also read to be synonymous with cancer, however they've also said that she definitely had non-alcoholic fatty liver disease which can lead to cancer but isn't cancer. It's all a bit vague, but they said that the only way they can know with any certainty what is going on is to have the liver biopsy. I agree that I don't want to put her through that stress. After reading all of the responses and discussing it with my family, I think we are just going to move forward as though she were going to live for many more years. I am going to keep her at home until the money for home care runs out, then move her into AL and private pay with the proceeds of her home. I think that's about all I can do at this point.
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My Godmother succumbed to liver cancer after an illness of only a few months.

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.
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The dermatologist went to my mother's Memory Care AL and suggested several biopsies be done for her skin conditions which suggest cancer. There is no way on earth I'd agree to such a thing b/c I would never agree to treatment for cancer if/when the biopsies come back positive!

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.
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GardenArtist Jul 2021
Lealonnie, I think doctors also recommend biopsies and other treatment because (a) of potential malpractice suits, especially when greedy, hungry, litigation attorneys are literally panting to get more cases, and (b) on a broader level, the medical profession hasn't fully been able to accept allowing someone to pass w/o trying whatever is possible.

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.
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To make it short: If you have the liver biopsy done what will be the end result? If she has cancer would you opt for treatment? If the answer is no, then there is no need for the invasive biopsy. If the answer is yes, then would she be able to tolerate chemo, surgery, radiation? Sometimes we have to make the decision to just let nature take its course. It's tough and none of us want to let go of our mothers, but would it be beneficial to her?
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What would be the point of a confirming the diagnosis of a cancer there is not the ghost of an intention to treat? Would it make any difference to the management of her palliative care?

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?
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Trendi Jul 2021
Unfortunately, like the LO of many people here, my mom is never in good spirits. She has suffered from depression for the past 11 years and refused to accept treatment for it. In my opinion that has only contributed to the dementia that she suffers from now. As far as comfort is concerned, yes she is comfortable, and for that I am thankful. The point of confirming the diagnosis was just to precipitate better planning on our part. I want to allow her to stay home if they determined that she didn't have long. Without that knowledge, I will be forced to move her into a NH within another four months or so. We can't absorb the cost of that much in-home care indefinitely.
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I understand wanting to have an idea of staging so you can make plans. But I don't really know if knowing the stage is going to be much help. The only things the doctors will really be able to tell you once the cancer is staged are the averages for people with the disease. They really can't give you a time frame of "how much longer" until a person is right at the end, and then, well, frankly, you can usually figure that out yourself - unless someone is so far into denial, and then it won't really matter what the medical people tell them, anyway.

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!
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