Colonoscopy for an 84yr old patient with advanced dementia & incontinence, really? Where do we draw the line?

You can do home test now that isn’t the least bit invasive. Is that an option? That’s what I would do. It’s a simple stool collection. Nothing else. So nothing uncomfortable for your mom.

I have a dual experience for you. My late MIL developed a tumor in her colon. It was cancer but had not spread yet it was blocking her ability to have bowel movements. She had surgery to have it removed but they were not successful and she ended up with a colostomy bag. This meant she would have to go to a nursing home leaving assisted living. She also could not remember she had the bag. My husband requested they do the surgery so that she would not have to have the bag. She suffered a massive stroke shortly after and passed within a few days. Sad as this was she was 90 and did not want to live in a nursing home this way.

Years later my mother who was in her early 80's had a colonoscopy for the first time. Many polyps were removed but one large one could not be removed this way and required surgery. She suffered alot of bleeding and passed out in her apartment while on the phone with my husband. She went to the hospital and subsequently entered AL. Some months later the polyp was removed successfully.

Bother of these mothers should have had colonoscopies before their 80's. In retrospect we should have been more adamant but they were living independent lives.

I do not think a colonoscopy should be done. I think as many other non invasive tests should be done to determine a hopeful possible solution. With our mothers histories my husband and I have had routine colonoscopies with good results. At some point though I think we will refuse them as they are difficult to deal with.






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First, decline all tests that would not change your treatment choices. If you're not going to treat colon cancer, there's no reason to have a test to confirm it. Polyps take as much as a decade to develop into cancer, so I'm not sure I would worry much about them. If your mother is experiencing low blood count and the treatment is periodic infusions, knowing whether she is bleeding internally somewhere or just not making enough blood anymore doesn't change the treatment.

Second, carefully consider possible side effects and complications. The colonoscopy anesthesia could accelerate your mother's cognitive decline by a stage or two overnight. Seniors have more fragile colons and are more likely to experience a perforation. How likely is a complication? Make sure you look at the stats for someone your mother's age and relative health conditions, don't accept summary statistics consisting mostly of decades younger people with far better general health. If there was a complication, how well could your mother recover and what would be her state after healing?

Third, does treatment for the condition help your mother remain comfortable or just prolong her life? Even into advanced dementia I choose to treat my father's CHF fairly aggressively because withholding treatment would have been at least uncomfortable and likely very painful. We were approaching a difficult choice on dialysis when Dad died suddenly of a heart attack. If Dad had developed a cancer, only palliative care would have been chosen.

Fourth, there's the balancing act and acceptance of declines. When my mother fell in Sep 2018 at 86, she damaged her knee and needed surgery to have any chance to walk normally again; however, she was not a good candidate for the needed surgery with a high risk of complications (particularly infection) potentially leaving her with a joint even more damaged or maybe even requiring amputation above the knee. The fall was caused by Mom's spinal stenosis and the doctor felt she would need a walker even if the knee was perfect again and a wheelchair was definitely coming. Why take the surgical risks when the best possible outcome would not be much better? After natural healing and PT, Mom's knee has reduced range of motion but with a walker she is slowly on the move again without pain. She cannot lift the undamaged leg impacted by the spinal stenosis very far off the floor anymore, she drags/scoots it. We use a wheelchair when she leaves the house and Mom remains able to transfer with minimal assistance.

It was emotionally difficult to change the standard of care goal in my own mind from "complete healing" to "maintaining as best we can" for my mother who's cognitive issues still allow her to function well with support. But then I realized at some point in the aging process the goal has to switch whether dementia is in the picture or not. Without cognitive issues, the senior makes that decision for his/herself. When there's cognitive issues, particularly in the advanced stages, I believe it's entirely appropriate to switch to maintaining a comfortable life while allowing natural declines to continue without aggressive treatment. My mother was very clear over the years before her cognitive issues she did not want treatments to prolong life when there was little or no chance of recovery to a good quality of life. I'm going to honor her choice as best I can.

If it doesn't bother you guys, I wouldn't consider surgery it could cause infections and could make things worse considering her age. I would let her live a good quality of life and you guys already see expected things because surgery is declined, so let her just be happy. Now if she has pain and discomfort surgery could be considered other than that, I would let her live her Best life Pain free and Happy.
Good Luck!

I am so opposed to my mom having a colonoscopy, but she too, is scheduled for one in January. She's been complaining of pain, blood on the tissue paper and "something egg shaped" often coming out her rectum that she pushes back in. All three of her doctors are in agreement with the procedure and the GI promises that they will only use a mild anesthetic to address the dementia concern. He said it could be internal hemorrhoids, a prolapse or cancer..... My mom stated in the past that she absolutely will not use a colonoscopy bag or go through cancer therapy. We shall see - it's amazing what becomes important when faced with the prognosis of prolonged pain or death.

Yesterday she had a very bad day and it all stemmed from her rectal pain and issues including a lot of pain, overly emotional outbursts and even a couple of vivid dreams.

We are seeing her neurologist today and that's one of the concerns I'm going to address with him again, just to be sure.

I'm telling you all of this because I want you to be able to make clear decisions that are in the best interest of your mom. My mom is still at home and still has enough control of her facilities to make decisions on her own, but I don't know if that's the case with your mom. I guess my question is - is she in pain? That would be my gauge to decide what direction to go.

You have received some great advice. If based on the results of the procedure you would not proceed with treatment, then I would not have the testing done.

I have a very good friend who has to have regular colonoscopies and at 50ish, they are invasive, painful and the prep is extremely uncomfortable.

Riverdale has commented that her husband requested that his mother not have a colostomy, but unfortunately until the surgery is in progress, it is unknown if that is an option. I have two family members who have had colon cancer surgery and they were both told the surgeon could not guarantee if they would wake up with or without a big.

My friend who has the regular colonoscopies will find out next week if she needs surgery. She has already been told that if she needs surgery, she 90% chance of waking with a bag.

My step Dad had a colonoscopy and colon cancer surgery about 6 years ago. He died of metastasized cancer a year ago. He had mild dementia, when he died, he had not been diagnosed with dementia prior to the procedures. He was lucky and did not need a bag.

My SIL is a gastroenterologist and would say an adamant NO to a colonoscopy in a patient well into their 80's. The chance of a perforation is huge. He said anything they'd need to treat aggressively could be seen on ultrasound. TXing for colon cancer is brutal and most people in their 80's opt not to do it.

Midkid is correct and Needinghelp's suggestion for the test is the way I would go.

The prep in itself is bad enough for someone "with it" let alone some suffering from Dementia who can't understand. The anesthesia could cause decline. And to think the ride to the operating room. Scary for someone with Dementia. And like said, the older you get the more likely the bowel could be perforated.

That blood could be caused by fissures caused by bearing down and constipation.

My Mom had bladder cancer and cured for over 5 years. She was in her mid 80s with Dementia and her doctor wanted to do a scope. I talked to my RN daughter and she said that if I wasn't planning on putting her thru the chemo if cancer was found, then don't put her thru the testing.

I can not believe any doctor in their right mind would order a colonoscopy for a person with dementia at that age.
So..devils advocate here...
You do the colonoscopy...
Positive for cancer what will you do?
Surgery? Not a great idea given current condition.
No surgery? Then what is the point of putting someone through the test to begin with.
If you elect for surgery..how well will this person do with possible chemo, radiation? Has the cancer spread? How far will you go with surgery to "get it all"?

Personally and the decision I made for my Husband...NO colonoscopy.
His previous tests had been negative.
There was no way I was going to try to "prep" him for a colonoscopy, try to convince him he needed to drink all that stuff and then wait until it kicked in and try to keep him clean, not to mention everything else!

I would say no to any invasive testing, no to any tests that would result in a diagnosis that you are not going to follow through with a treatment.

Eventually we do come down to "If the tests are positive, how do you choose to treat". I am 77, and a 31 years survivor of breast cancer (found by me when mammograms were negative). I now do only self exam and have refused mammograms since ago 70. I would not aggressive treat any future cancers, and would have surgery only for blockages of some sort. No chemo and no radiation. Would join hospice and ask for the "good drugs" and do my final exit when I got the 6 month go-ahead (allowed in my state). I would not suggest a colonoscopy for this age. And positives often mean only diverticuli, which are quite normal at certain age. But each person/each family must make these decisions on their own according to their own thinking. Wishing you luck.

Why did your mother's PCP order the test for occult blood in her stool?

The reason I ask is that it would be correct to treat your mother's symptoms whether or not there is a realistic hope to cure disease. So: what are the symptoms; next question what is the cause; next question what do we do about it that will benefit your mother enough to be worth the drawbacks - wouldn't be an unreasonable line of questioning for the doctor to take.

If you don't like the colonoscopy idea, and I wouldn't either, what other investigations might be available? Has the PCP said what he's looking for?

No, please don't let them put her through a Colonoscopy at her age.  Her intestines are too much at risk of perforation.  And, although Gastros will say no problem, and they'd call a surgeon in to stitch that mistake back together (before one bleeds to death! sorry), it'd likely not be the same, and quite possibly worse. 

You said if she were to have a cancerous polyp, it could be removed.  A lady in her 60s had a colonoscopy (which I begged her not to do because of her on going gastro issues and the fact she'd had one in the past which caused her more problems afterward).  She did anyway, and told the Dr. beforehand that if any polyps were found, to leave them alone.  The Dr. didn't honor her wishes as he'd promised her, and removed all polyps he found (who knows if any were cancerous? She was never told).  Now she can't eat anything al all without being sick with acid reflux, vomiting and/or diarrhea. 

If you want to keep that PCP, however, you may need to make a Gastro appt. (a Gastro you select, not the PCP), but decline any procedures.  Personally, if possible, I'd seek a new PCP that takes her age more into account, and doesn't send her anywhere that could potentially include invasive tests.

Lil's answer reminded me. My GF was a Nurses aide for 10 years and swore she would never have a colonoscopy because of the things she saw. But she agreed to the stool test. It came up positive. So she agreed to the colonoscopy. That drink made her deathly sick. She was taken to the ER and found to have dehydration. She was released at 3 am and back at 6am for the procedure. TG no cancer was found. Dr. said those tests can show false positives. She said that is her first and last colonoscopy.

As to decision making, we treated several upper respiratory infections with antibiotics during the 5 1/2 years my mother was in residential care.
We also treated a vaginal infection because of concerns about UTIs.
We didn’t treat or seek diagnosis for anything else, and she lived to EXACTLY 95.

Doctors are supposed to repair/heal/improve the lives of their patients. Sometimes it just can't be done. Very hard to tell the doctor/s too. None of us want to make the call, but when the time comes, we owe to the suffering.
We must be strong advocates on behalf of our loved ones. If Mom is where, deep down, you would not accept "life" for yourself, the doctors need to be told family members want to seriously explore pain management and possibly hospice.
So, so difficult to be in the hot seat and asked to confirm what is already documented. No DNR, tubes, surgery, only pain management.

Brings to mind a true story of an elderly man who died from having one. Doc and assistant doing procedure with lighted probe, hit a methane bubble, caused "explosion" strong enough threw Doc and assistant into wall.

Does she have a medical directive? Who has MPOA or POA? Should the answer be no to any of this, then check your State Law as it may be as simple as taking a vote as a majority rule for 1 of you to be #1 MPOA and #2 as an alternate. Go to a notary, get the form filled out and now you have legal right to tell the Dr no and nothing more need be done. You should also talk with a Lawyer to get a POA to cover everything else you're going to run into. You can even get a guardianship with limited powers.
If none of you has the 'legal' rights, you could possibly be reported by the doctor to adult protective services for neglect.

You know, the whole matter of 'medical intervention' for elders with dementia is maddening. My mother is 93 in January. She was taken off blood thinners because she was having SUCH HORRENDOUS nose bleeds that we kept going back & forth to the ER by ambulance. She was coughing up clots the size of oranges, I kid you not, and the doctors said NO MORE blood thinners. So off she went.

Now she may have a DVT in her leg. What's the treatment for DVTs? Blood thinners, of course. And LOTS of them, in high doses and even needles of Heperin in the stomach. Yay. So what do we do? Find out if she has a blood clot (she refused an ultrasound; she lives in Memory Care) and if she does, THEN what? Or, leave her alone to let nature take it's course?

Personally, I'm 100% for palliative care. Minimal medical intervention. Minimal medications. Minimal horsing around by doctors and specialists and minimal trips to hospitals, rehabs & ERs. She has dementia. She can't walk & is wheelchair bound. She has fallen 40x that we know of. She has chronic insomnia and complains 24/7. She has congestive heart failure & AFIB, She's had 2 bouts of full-fledged pneumonia, the last one in May which hospitalized her and put her in rehab, too. Damn near killed her. But she pulled through. Again.

Her money runs out in about 18 months so I'll have to apply for Medicaid to get her into a SNF with a roommate. She hates women with a vengeance (all people but especially women).

So...shall I take super-human, heroic measures to save her life? I don't think so. That may sound 'mean' to some who say things like Mother Should Easily Live to 100 and I Will Do Everything In My Power to Make it Happen!!

I won't. I will allow nature to take it's course, as people USED to do before modern medicine decided to keep people alive WELL past their expiration date, despite living in Memory Care, running out of money, suffering daily, having no idea WHAT the heck is going on, and having more issues than Newsweek.

Rant over. Spare your mother the colonoscopy, and spare yourself all the guilt trips that you'll likely put yourself on if you DON'T schedule the damn thing. Leave the poor soul alone and let nature take it's course. Draw the line HERE.

Good luck

My answer is twofold. Mom will be 90 next month and a lifelong hypochondriac. Seems every dr. we see sends her to a different specialist. We have recently added a dermatologist (no cancer) and a speech therapists because she coughs a lot and now insists she spits up her food. Then there are the intermittent headaches, eye floaters, ear pain, backache etc. I'm tired....this is taking way too much of my time and patience. Truth be told she does have health issues.....nothing extreme and considering her age, and mobility restrictions, she remains in decent health. I refused a colonoscopy and other tests because a fishing expedition is not on my agenda. She lives at home with dad and I am her ride and have POA. Any invasive procedure is off the list. At 90 if you look for issues you will find something.

Flip over to my grandmother who passed at 97. Never went to the dr. (waste of time). At 80 she fell and broke her hip. After routine blood labs the hospital wanted to run tests for diagnostic purposes. Her thoughts were that when her time was up, then she would leave this earth. No fuss, no bother. A loving strong willed woman who was devoted to family and passed peacefully in her sleep. My choice: I'll take Nana's way any day.

The doctors are always going to tell you they can do something. I have yet to meet a doctor who told us, when my MIL's neurodegenerative disease was speeding up, "there's nothing left to do". Medicare was their cash cow and her final 24 hours of life in the ICU cost almost $500,000. I knew she wasn't going to make it; even my husband, who has little interest in medical things, knew she wasn't going to make it. And yet the doctors talked my FIL into a Hail Mary therapy, which failed.

Focus on your mother's quality of life. I would not do the colonoscopy.

Thank you everyone for your answers & support.
To answer some of your questions, I am her financial and healthcare POA. My 2 sisters are supportive. Her PCP is a reputable & caring Geriatrician, whom I have known personally (through work) for 6 years. I assume she ordered the occult blood test for routine preventive care, as mom does not have anemia or other associated symptoms.
I haven't considered Palliative Care yet, as Mom is happy, healthy & gets around nicely with her walker. She only takes meds for low thyroid & mild diabetes. Her issues are dementia, incontinence & arthritis. I will look into Palliative Care, to get a better idea, when that would be appropriate.
As for the question, "would I want t live this way." As mom was losing her memory, it was terrible for all involved. As for now, she is so content, on no psych drugs at all. I know this is very unusual. She has had Vascular Dementia for more than 15 year, with a very slow decline.
Back to would I want to live this way? To be blunt, I hope I can choose to end my life, before it gets too bad. The problem is, that  I will be in denial until it is too late to remember to carry-out that plan! I wouldn't like to depend on others to feed me & wipe my butt, when I do not remember anything, except maybe 50+ years ago! Possibly more than that, I would hate spending the money that we worked so hard for, to pay outrageous amounts to keep me in memory care, and I do not want to live with my dear family and become their burden.

Thank you all for the great advice. I appreciate this forum very much,
Take time for yourself. Join a caregivers support group, or just go to lunch with a few other caregivers. I do and we share ideas & stories & we laugh a lot!
God Bless you all. Enjoy Christmas and the coming year.

The test that you see advertised on TV, will tell if there is cancerous DNA, but that would still lead to a colonoscopy. Not gonna do it!

We have been faced with the same dilemma - at what age do we draw the line for colonoscopies. My mother had familial polyp-type bowel cancer 30 years ago, had regular colonoscopies at 1-5 year intervals depending on the type of polyps. At the age of 85 her specialist suggested no further testing because (1) the problems associated with preparation which included dehydration and the obvious possibility/probability of soiling herself (2) the extra risk of an anaesthetic, of which she had a general every time, and (3) if they did discover cancer at that early stage, given her history the cancer would be so slow growing that something else was likely to take her out first.
Initially my mother was incensed that the doctor seemed to be giving up on her. My mother is one who insisted even if she is 106 and a vegetable that she should be resuscitated because while there is life there is hope. But over time she has forgotten that she even had cancer so that is a relief.
Having said that, her older sister had breast cancer at 87 and she sailed through the surgery, and then at 94 1/2 she had a rectocele repaired because it was causing major management issues. Her dementia had set in, she had no idea what was going on, but physically came through brilliantly. But of course there was no preparation for either surgery.
As an aside: I have absolutely no faith in those occult stool tests. One has to be bleeding at the time one takes the samples, and one has to be lucky to get the section containing blood. But there is no indication of where the bleeding stems from, could be a haemaroid, bleeding ulcer, diverticulitis, cancer, anything. And there might be no blood and any of those conditions could be rampant. At best it is better than no testing at all. My siblings and I probably carry the bowel/breast/uterine cancer gene so we automatically have a colonoscopy anyway, so it is easy for me to be submissive of the occult tests.
Canyon 727, I think it is still worthwhile consulting the specialist. Maybe non-invasive things like CT scans might show up any issues.

I HATE western medicine!

My husband’s doctor told him the cut off age for a colonoscopy was 80. He had his last one done a day before his 80th birthday when he was having a bleeding problem 4 years ago. Everything turned out OK but the doctor told him that was his last colonoscopy based on his age. I don’t know what would happen if he developed another problem.