Colon cancer screening -- yes or no?

My SIL with dementia got one of those in the mail by her doctor. She was so upset and said she would die before letting anyone help her with it and she didn't know how to do it herself. I told her it was meant to do only if you wanted to. She threw it away.

I would toss the tests, and find a good fiblet such as that test was faulty and we're waiting on a new one. Or the Doctor ordered a different kind that will be easier, should arrive next month. Rinse and repeat until he forgets about it. The dementia is already an incurable terminal illness and likely to affect his lifespan before colon cancer, which is known to usually be a slow moving one. And it doesn't sound like even if he was positive for it you could move forward with treatment. Some doctors are clueless about dementia and will throw everything at the patient that they would for a cognitively normal person.

if he is so focused on the test and you can’t get it away from him, let him take it and you tell him you will get it in the mail and then toss it. My DH gets hyper focused on this medical stuff.

Thanks for this discussion. It's been about 7yrs since DB had a colonoscopy, and new VA doc asked if he wanted one. He said to go ahead and order it. Re the above "what's the point" paired with folks with dementia not doing well with anesthesia I'll suggest he revisit that decision.

What QBC and Jeanne C. said. That's a no for me. I actually had a conversation with DH's former long time PCP when they kept pushing things like this on DH, to ask him "WHY would we do that?". It was an enlightening discussion for us both. I realized he was on auto-pilot with the testing and whatzit calendar of things to do, and bill for. And he learned that lay people, perhaps especially spouse caregivers are not ignorant people and perhaps should be consulted, especially when HIPAA is in place. We can be pretty good thinkers when it comes to determining what makes sense for our PWD LOs, who we are with 24/7.

Until I pointed out the implications, this highly credential MD - a practitioner and senior professor - really hadn't processed that the 2 year + Alz diagnosis from his expert neuro colleagues (which he was fully aware of, and had access to from the exploration stages) meant palliative care was in order when elective procedures came up. Hadn't really even occurred to him. We switched to a gerontologist as the lead doc right about then and had much more realistic support and recommendations ever since.

This is just food for thought. There is a famous doctor who stated he personalky would decline treatment for any serious illness after age seventy-five. In his thinking, the trouble of the treatments is not worth the potential few months added longevity. I'm not recommending this, but it is something to think about.

Iris

Hey M1 - you are preaching to the choir. And I definitely wasn't including you or all medical personnel. But our collective experiences here say there are many unfortunately, who miss the boat in this regard. I think it is actually the system and my MD friends have led to that conclusion. Financial policies over patient safety and more pressure on the medical pros to toe a very rigid line. AI is poised to make it even tougher.

No need to protest my earlier complaints about our experience with DH's longtime PCP. We know there are wise and compassionate professionals in all fields and specializations. But my experience and that of many others, says the system has some MAJOR blind spots especially with regard to dementia diagnosis and subsequent support. I can stand my by remarks that this longtime PCP missed the forest for the trees for years. He was either clueless (I think it was elitism and dismissiveness that either my DH or I had any input that was worthy of his consideration, frankly). Or the alternative is, he knew better and deliberately ignored what was best to promote what would provide the greater income stream. I don't think that was the case; hopefully not as that would be even worse. I will say his increasing willingness to assume that my input was not professionally grounded (and his comfort level ignoring other professional records and common sense, silo-ing his focus to not even think through the implications of findings and reports from the memory clinic of his own teaching hospital), was a real disservice to my DH (and me as spouse/caregiver/POA, etc) in this process.

e.g. As I have shared here before, the last straw was this doc's refusal to prescribe an antibiotic despite multiple calls and pages and portal requests over several days because DH was asymptomatic with a recurring silent UTI at the time. While that (former) PCP admonished me for not scheduling a colonoscopy (no history and no reason given terminal status anyway - Alz and 80 yrs old) this doc was at that very time ignoring my concerns and insight about silent UTIs. DH would not leave the house to get a culture, but test strip verified well enough, and our history of a couple of prior UTIs said this was the issue. But because there was no odor, nor painful urination as far as I could tell, he blew off the information I shared about behaviors and how UTIs are different for PWDs.

This allowed escalation in behaviors (and misery) for days while I tried my best to keep DH from going totally off the rails. This endangered both DH and me, cost me some part time work that feeds us because DH could not be left alone even briefly, and let things escalate to the point of police intervention to help get a wanderer back home. Up all night/s, pee literally everywhere, and led to a follow up ER transport and hospital admission from which he was discharged almost immediately after UTI was discovered and treatment started (antibiotic like I had been seeking for days). It was a fiasco and for no reason other than disregarding the caregiver's insights which risked patient safety to a point that makes me disgusted all over again as I recount this.

DH could not advocate or communicate for himself. My advocacy (with HIPAA release on file for years), was disregarded. Again, because there was literally no reason to deny my repeated requests to address DH's situation one way or another — letting it ride could have resulted in sepsis as you know. And days and days of discomfort and over the top dementia escalation was cruel and unnecessary. SMH even now. Its not like I was asking for a dangerous or risky drug that might kill (an already terminally ill) man, or a narcotic or controlled substance that maybe I was selling out of the trunk of my car, lol. Dude had no clue and he was the medical expert in his mind so why was I even bothering him. He was stumped when I asked WHY, would we disregard his escalation and assume DH's confusion is "a known symptom of dementia" (he actually pushed back on what I was describing by day 3 as if I was an idiot).

Caregivers know the difference between our PWD LOs baseline and escalation. When doc diverted to noting I'd neglected to schedule DH's colonoscopy I asked him WHY would anything other than palliative care be in order given his current diagnosis and stage? He was stumped. So after this drama was all over, we made a switch so I would not have to deal with denial on the part of his lead medical professional, the key to all other referrals and services, his PCP. Dementia and caregiving are hard enough without that.

The new PCP we selected, a geriatrician (even their nurse practitioner), brought expertise that made life SO much better. They reinforced palliative care and shortly afterward encouraged a hospice eval which set us on the path we currently are on. Much more stable through stages 5-6 and now early 7. Still a roller coaster with his condition and fairly swift progression, but the highs and lows have smoothed out and the volatile moments are fewer and further between. That's a win.

No BW I am as frustrated as you are that these abuses and lapses in judgement are so common. One of the reasons why I was not unhappy to leave practice when i did—it's just a crying shame, really. I don't know how we ever get back to any system that supports common sense more and that is not driven by third party insurance. Medicine is not a market economy and never was, never should be IMHO. There are no substitutes for thoughtful clinicians and open communication. Very easy to be critical, but not easy to come up with workable answers I'm afraid. Sooo many variables.

Block their phone number on his phone if you can and toss the screening test.