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My 89 year old mother is in Memory Care and she most likely has metastatic lung cancer. She has moderate dementia. Cancer diagnosis pending biopsy. We would not persue aggressive treatment , We are in favor of keeping her from knowing her diagnosis as she has always been an anxious person and we dont want her last days on earth in mental distress about the cancer. Has anyone had an experience with dementia and cancer and what are your thoughts about telling or not telling a person they have it. I will also get some professional advice but it would be nice to hear personal experiences. Thank you!

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From a moral perspective:
I think you should guess what your mom would have wanted, if she had a clear mind. Would she have preferred to know, no matter what? I’m the type who prefers to know, no matter what.

From a legal perspective:
The laws now state that if death is imminent due to illness, the patient has a right to know the diagnosis, because they might want to say bye to certain people, or get their affairs in order one last time.
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sp196902 Aug 2023
She has dementia if this would be retained in her memory then telling her would be cruel.

People with dementia don't really have the concept of getting their affairs in order. Do they?
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Why bother with the biopsy if you are not going to pursue treatment? It seems like putting her through that is pointless too.

With her moderate dementia if you told her would she remember the next day or week?

I disagree with Venting if telling her will create anxiety and stress. Why would you do that to a person?

Adding I am for not doing treatment for cancer on someone with dementia.
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ventingisback Aug 2023
“I disagree with Venting if telling her will create anxiety and stress. Why would you do that to a person?”

I do see what you mean. I think these things are so personal, as in case by case. Like my mom would prefer to know no matter what. But for sure, not everyone is like that.

Regarding the legal perspective, I’ve had doctors tell me, that if imminent, the law is clear: they have a right to know; the doctor has a duty to tell the patient the diagnosis.

Many years ago in some parts of the world, if it would upset the patient, doctors would keep the diagnosis secret from the patient. But laws have changed. Now a patient has the right to say bye and get their affairs in order.
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A very wise geriatrics doctor told me years ago "if you aren't going to do the treatment, don't do the test".

Don't put mom through a biopsy if you aren't going to pursue treatment. Get palliative care for her and then hospice.
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KPWCSC Aug 2023
Exactly what our geriatrician told us. Even the testing can bring unnecessary stress and pain, even side effects and recovery issues. No biopsy, nothing to talk about.

As far as getting her affairs in order, everyone should be (financial, legal etc.) because no one knows when their time will be….her mom may outlive many of us who still think we might live forever.
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Thanks for the responses so far! I had talked to the Doctor and we agreed that doing the biopsy is a good idea as cancer can not be confirmed without it and who knows maybe its NOT cancer. As well we would know what we are up against and be able to plan carefully for the best kind of life she can live until she dies. No one has mentioned anything about the law yet, but I will bring it up at the biopsy appointment. I just cant stand the idea of her knowing and really believe she would be happier not knowing. She was a heavy smoker all her life and knowing she has lung cancer would just make her feel guilty, ashamed and disappointed in herself. It IS cruel that we tell her!

I am now trying to figure out what to say to her before going to do the biopsy. Maybe I could tell her they saw a spot on her lung and want to check it for infection...and then never talk about the results with the hope the with time she forgets about the biopsy. Any suggestions?
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ventingisback Aug 2023
“It IS cruel that we tell her!”

You know best. Follow your gut. As I said, for me, it would be about guessing what you think your mom would want. And if you guess she would rather not know, then definitely follow her wishes.

(((Hug)))

Yes, you can ask about the law. Some doctors will take the law literally, and tell the diagnosis. Definitely speak with her doctor. I’m sure the doctor will follow what you think is best.
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What are her symptoms?

Does she generally forget things you've talked about?
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In pondering why she would need to have any diagnosis of any sort, and since I've not been in your exact shoes, would a specific diagnosis impact insurance coverage or options for any services going forward? Like, is palliative care covered differently if there is a cancer diagnosis as opposed to just "not thriving"? I'm only asking because I don't know and the answer may help others reading this thread.
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ForReal Aug 2023
She said that the doctor told her that a biopsy was necessary to identify and treat in case it was not cancer. The op also said they would not pursue aggressive treatment. That does not mean that there may not need to be less than aggressive treatment.
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My grandmother was riddled with cancer and didn't know it. They did some x-rays and scans, discovered all the tumors, told her, and she died the next day.

If your mother was a heavy smoker as my grandmother was (though she'd quit several years before), odds are excellent she has cancer. I think the doctor is being ridiculous even suggesting she might NOT have it.

I, too, would skip the biopsy. What kind of treatment would you do even if it wasn't cancer? Surgery? No. So, why do a biopsy?
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sp196902 Aug 2023
I agree I don't get the point of the biopsy even if it is cancer or something else (like really what else could it be? If it's benign or malignant either way it doesn't matter because there will be no surgery). I think the doctor just wants to get paid to do the biopsy. That's my 2 cents on that.
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Adding that general anesthesia can make dementia worse so that should be another reason not to proceed with the biopsy in my opinion. Ask the doctor about that.
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Igloocar Aug 2023
For a needle biopsy, I doubt if a general anesthetic would be necessary. I had an open biopsy, and it wasn't necessary even for that.
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If this biopsy can be done with a minimally invasive procedure (such as through scope and under minimal anesthesia) I might consider it. Otherwise I would not do the testing even. Your Mom is of an age. Ultimately she will die, and I see little difference in knowing of what. You don't wish her to know the results of her owns tests, and I can't see why you should. As to the doctors, the orders he gives should go with the symptoms your Mom has, and scans are enough for the doctor to know, along with symptoms, whether hospice should be requested; he doesn't need to know the type of small or large cell cancer she has as you, as her POA, have decided treatment is not an option for her (and I agree with you). Nor does she need to know, if that is your decision (and you know her best). Nor do you, in my own humble opinion.

Sometimes the opinions of others simply adds to confusion. Go with what your gut tells you here. I trust your love for your Mom and your knowledge of who she is and what she would prefer.

In general, and as an RN all my life, I don't believe in hiding diagnosis. I would simply say a spot was seem on her lung and in 6 months doctor would like another scan (which in truth will tell it all). Many people get lung cancer today without having smoked a single cigarette; so grandmother can take "guilt off her plate" with this one.

I am sorry for this probable diagnosis, but agree that treatment will not add to the quality of her life.As a breast cancer survivor (so far) there are worse ways to go than cancer with good hospice medication.. Dementia and ALS for instances.

It is highly unusual today for people to hide diagnosis from patients "for their own good" and my fear is that someone somewhere WILL let the cat out of the bag. You will them be blamed for hiding things from grandmom. I personally would not hide a diagnosis such as this. But as I said, you know your Mom best.
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You know how your Mom will react to the news. I would not tell her myself since nothing will be done. And she does not need to get her life together, she is in MC. I would think she has all her ducks in a row. Lots of her personal things have already been given away or sold. All she has is whats in her room. My Mom forgot my deceased Dad, my deseased sister and my middle brother. So I doubt if Mom needs to say goodbye to anyone.

This is one thing I hated about Caregiving. Having to make decisions for someone else.
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It depends a lot on the person. My mother cannot remember anything recent and we used to agonize over telling her my older brother died. We took her to the funeral and used to tell her when she asked but it was hard for her and us every time we did it. Eventually we decided not to tell her anymore and she stopped asking about him.
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Does she need the diagnosis to get hospice care? That may be a reason to get the biopsy. I would think you might be able to get hospice without the cancer diagnosis though.
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PATTIEMALLEN Aug 2023
The Alzheimer’s alone may be enough to qualify her for hospice. Knowing for sure that lesion is lung cancer not sure is necessary as family has opted to for comfort measures only, hopefully they had this discussion with parent prior to Alzheimer’s diagnosis.
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Hospice can come Into the facility . I would want to Know so you Know what you are dealing with But if the Biopsy Is a Invasive Procedure I would fore go anything to do with Anesthesia . Sometimes they can do a Blood test to see if you have cancer or a X Ray / MRI . I know the dermatologist Just stuck a Knitting Needle near My eye it Hurt But that was for brain cancer . My Brother had schizophrenia and they took him off all His medicine - he went thru chemo and had a chance of surviving with Immunotherapy But he did Not want a IV and His schizophrenia was going Mostly untreated . In the end he did Not Know he was dying and he chose to smoke again . The social worker was great and I Made the decision that My brother would make his choices In the Last Months of His Life . What would your Mother want ? What would be her choices ? I Got hospice into the rehab and when the tumors and spasms got Large and I consulted with the head doctor and head Psychiatrist of Dana Faber everyone agreed it was time for Hospice and then Morphine .
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sp196902 Aug 2023
A lung biopsy is an invasive procedure and requires a general anesthetic.
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If you are not going to put her through the struggle and pain of surgeries and chemo, I would not tell her. If it were my mom, I wouldn't even do the biopsy. What would be the point? Does hospice require it?

You say she is an anxious person...no need light that fire by telling her something she can't really process or do anything about. Hospice can make her comfortable as things progress.
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No! Why?????
Why would you tell her something that will be highly upsetting. Then she will forget, and you would have to tell her over and over again?

What's the point of her knowing this information?

Just keep her happy in her last days. Play her favorite music. Give her cute little gifts and items that she might enjoy. Do her nails and make-up. Give her JOY in her last days.
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My daddy had ALZ. I did not tell him. He knew that he was forgetting things but I was afraid if he knew then it would upset him. My friend told her mom that she had ALZ and her mom went into immediate depression - stopped crocheting, crafting, going to the salon, church - just sat in her chair petting her cat until the day she died.
I agree with others statements - if she is an anxious person telling her is not going to help her. Blessings to you and yours
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My mum has incurable cancer and dementia, I haven't told her because she would focus on it as she gets obsessed with things

The doctors wanted me to tell her but I can't see any good reasons to, I want to help my mum have as much quality of life that she can. Who would gain anything from telling her
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Davenport Aug 2023
I find it interesting that 'the doctors' wanted you to tell your mum. Gosh, how many docs said this? There's no medical reason; their specialty, and what we want them to be is to be a medical practitioner; they're not there to give such advice--you might as well survey a dozen people on the street on their opinion--doctors are not all-knowing of everything, especially not emotional and spiritual aspects of being human (unless they're Psychiatrists, or are palliative-care docs. This is my own opinion, and I offer it humbly.
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As you say, confer with her PCP or other specialist and, perhaps the staff where she resides. Then, do what you feel is best for both your mother and yourself . Some considerations you may want to ask yourself may include:
1. If I tell her, will she comprehend and remember? Depending on the stage of her dementia she most likely will not.
2. Will it create more anxiety for her and myself when she doesn't remember and or asks same things over and over ?
3. What will give her the best "quality of life" in the time left ? What defined " quality of life for her" when she was well ? How can " quality of life " be best provided for her now?
4. If you decide not to tell her, will you be at peace with yourself?

5. Also if you decide not to tell her, will ALL of the family and STAFF honor your decision and not try to go behind your back and tell her?

6. Hospice should be a good support for both her and you / family going forward which ever way you decide about telling her about the cancer.
Be sure that you access their chaplain and social worker team members for ongoing support with you and the family as well as of course your mother. Be sure all of the hospice team will honor your decision.

Practice good self care!
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Treee7777 Sep 2023
Thank you for your advice!
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I have also chosen not to tell my Mom regarding her demetia/Alzheimers and bone cancer. She wouldn't understand or remember but the times I could tell her she would be very upset. I see no reason to have what time she has in distress. She also has macular degeneration and that is a big distresser for her. She doesn't understand why her vision is failing. She already has enough stress to deal with.
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lealonnie1 Aug 2023
Bone cancer is terribly painful, mine was excruciating before I got into remission. I hope you have hospice who can help mom deal with the pain. Best of luck
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If you know she has metastatic lung cancer and she's 89 with dementia, why are you doing a biopsy? I assume it's a needle aspiration biopsy but even so, what's the point? Maybe it's time to have palliative care come on board. Doctors will keep going - diagnosing, talking about tests and treatments - unless you tell them to stop on behalf of your mother.
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LuckyLindy Aug 2023
Please do arrange palliative care/hospice for your loved one.
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This is one instance where dementia is probably a blessing.
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My father had moderate dementia in a care facility when he was diagnosed with stomach cancer. He was 86 the doctor said his heart would not tolerate the surgery and then chemo he would need. So he agreed with us that he would not be told he passed a few months later because of a broken hip.
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Senforcement Center of Braxton co WV go door to door asking," if you just tell us, as nurse practitioner, that your mother has just a touch of "Dementia " we can get you- daughter- paid for more hours for your mother". This is wrong. Its a way to make money off elderly. This Dementia diagnosis goes into your chart never to be removed. If you don't have a will, POA or gaurdian set up on this day of diagnosis...you are left as Ward of State and DHHR, APS takes over your life, land health care. APS told me " I say weather your mother lives or dies"
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My dad had Stage 3 colon cancer and moderate dementia (at the time). He went through surgery removing 1/3 of his colon. Afterwards he had chemo every other week for 6 months and had to wear a pump for the chemo for 3 days. The first night he had the pump on, he somehow managed to take it off (very scary). This was all during the Covid shutdown so it was a nightmare as he lived in Assisted Living and I wasn't able to go in and check on him. Long story short, he went into remission but the cancer came back - in less than a year. He was Stage 4 and his Oncologist gave him 6 months to live. He was sleeping at the appointment when the doctor told us. All the chemo wrecked havoc on his body. He was diagnosed with heart failure prior to that appointment and I already had him on in-home hospice. I never told him because I knew he wouldn't remember as his Dementia had progressed to severe and I didn't want to upset him over and over. He didn't remember having surgery or chemo either. In addition, any time he would go to the doctor, dentist, etc. he would become even more confused and agitated. He died 5 months later.

I forgot to mention, his regular doctor wanted him to get a pace maker after his heart failure diagnosis which my family and I refused to do. He wouldn't have survived the surgery.
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In simple terms "no". I did not tell my Dad when he had pancreatic cancer. All you are doing is making matters worse for them. Do not put her thru a biopsy either.
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I wouldn't tell her of a cancer diagnosis, especially since she may not remember it anyway. I wouldn't tell anyone else, either. I'd make sure that family members were seen, though, in the last days, without blabbing what's going on. Once you start telling people someone has cancer or even anything else, they have advice. For dad, someone said, "They're curing cancer in the Bahamas now, did you know that?" They thought I should take him there. He was 92. Not doing it, and it wasn't true.

Other people chimed in with ridiculous ideas. A friend's family thought she needed to change her diet to organic. The cancer had already eaten up a good bit of her body by that time, and no food was going to help, only chemo, which didn't have a chance of working and didn't.

It's really not necessary to broadcast others' health care info. It's no one else's business and opens you up to a bunch of worthless opinions that do nothing but stir things up at a difficult time.
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againx100 Aug 2023
I agree. No one needs to know. Keep it simple.
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Absolutely not! Dementia is bad enough on its own, but it awards a state of total forgetfulness in most cases. Trying to describe a diagnosis of cancer (sorry to hear that) will only get lost in the shuffle of mental decline, while it might might even add unnecessary stress in some remote corner of the person’s world. Plenty of love and support while this critical added condition resolves one way or the other. In a way not knowing much is a lot better than knowing too much. Either way must be dealt with and take its course. Peace and Best Wishes to all who care!
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Here is a link on what to expect from the various ways to have a lung biopsy:

https://www.webmd.com/lung/lung-biopsy-what-to-expect

Once you read this, you'll see that no lung biopsy is a good idea for an 89 yo, even those that don't require general anesthesia.

And no, no mention of the C word should be made to mom at all.

Best of luck.
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Treee7777: To undergo the biopsy is going to be difficult.
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It would be cruel to tell her. I would NOT do the biopsy. My mom has mild/moderate dementia and I would not tell her if she has any serious health issues. She is 80 and not doing so great. I mean, she's OK, but has a bunch of little issues, besides the dementia, and is generally not terribly happy. So, beyond comfort measures I plan on doing nothing to extend her life. Why extend a life that is just going to get sadder and sadder as the dementia progresses?

Switch your mindset to palliative and/or hospice type of care for the rest of her life. I wouldn't want to know. And I wouldn't want to spend my remaining time being shuttled to the doctor for tests and/or treatments. It's stressful and unnecessary, IMHO.

Best of luck.
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Treee7777 Sep 2023
Thank you!
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