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Has anyone ever been told by their parents PCP that it is harder to get PetScans and procedures done on patients over 75? My Dad is 80 soon to be 81 next month. He has been diagnosed with dementia and has diabetes. My Mom is 79 and has Parkinson’s and Dementia that is causing a lot of issues. A least she still knows who I am. I asked her PCP if she could schedule a PetScan for Mom because her Mom died of Bone cancer and my Mom has been in so much pain she hardly gets off the sofa these days. Her doctor told me no she couldn’t because it is frowned upon to do that on someone her age. I was struck speechless. And that was the end of our conversation. My Mom is a one year survivor of breast cancer. So what the heck? Does Medicare stop paying for somethings after 75 years old? I am their youngest daughter and caretaker. The medical world frustrates me!

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My mother is just under 94 and hasn't been refused various tests over the years. They have to be warranted, however, before a doctor will agree to write an order for them. A PET scan uses contrast dye which can be dangerous for some people, especially the older we get. There are other, less invasive tests which your mother can be given to find out why she's in so much pain she can't get off the sofa. It's not necessarily bone cancer at play here! I have bad lumbar arthritis and degenerative disc disease which renders me in pain and immobile lots of times. That diagnosis was arrived at with simple xrays which your mom's PCP would likely agree to, at least as a first step, you know? If the xray shows something significant, maybe THEN she'll write an order for a PET scan or the next test down the line.

If you have questions or concerns about your mother's care or why certain tests are being disallowed, why not ask the doctor up front? She likely would have told you why the PET scan was 'frowned upon' and you would have had an answer! Be aggressive with these doctors! Get the answers you need, you're entitled to, and so is your mom!

Good luck!
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cherokeegrrl54 Nov 2020
I agree with you 100% about the arthritis and other problems. I have osteoarthritis in lumbar spine, si joints and hips with spurs impinging on the spinal canal. And waiting for covid to at least slow down so i can hav a knee replacement. As you know, living in pain is awful. And we have days we can barely move....but we still go forward and try to make each day count!!! Love and blessings....Liz
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If your mother has cancer, are you going to treat it? She has Parkinson’s and dementia. Can she even tolerate a PET scan? Is your goal to prolong her life no matter how bad her quality of life is? If she has cancer, are you going to subject her to chemo or radiation? What is your end goal here?

Medicare will only pay for a PET scan if it’s ordered by a dr and deemed medically necessary.
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ILovMyMom Nov 2020
My goal was to try and make her comfortable, but after reading some of the post I decided that I want my parents to just live a peaceful and happy life. In January 2021 will be their 60th Wedding Anniversary. So much to celebrate even if Mom can’t get off the sofa due to pain and nausea. I love her to much to put her through anything else. She made it through one year breast cancer survivor. That is amazing in itself.
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I had breast cancer in my late 40s. I have NEVER had scans other than a lung scan when a chest xray showed a suspicious shadow. I stopped all mammograms at age 70 (retired RN) by my choice.
And the answer is that yes, there are recommendations for tests and age. And in fact colonoscopies past age 75 not recommended under current guidelines either. You can look up guidelines online; just type in, for instance, "CDC guidelines colonoscopy".
Testing is very expensive, it often leads to a lot of anxiety and it often leads to false positives and further testing.
Both Dr. Dean Edell in his book Eat, Drink, and be Merry, and Barbara Ehrenreich in her book Natural Causes talk about the over testing and over treatment of the elderly in our country, and the torment it causes for them before they are allowed finally to be at peace. And of course the books of Dr. Atul Gawande including his Being Mortal, are not only famous but infamous.
As the only advocate now for people who cannot make these decisions for themselves I would consider carefully what you knew their decisions, when they were competent to make them, might have been. Hopefully you did discuss things with them at that time.
If you truly wish certain tests to be done, and there are SYMPTOMS that the doctor agrees could indicate a need for them, and you wish to be more aggressive in testing and treating rather than less, then revisit this with the doctor. It is my opinion that putting someone elderly through aggressive treatment for say a diagnosis of metastasis to the bones, is basically a torment, but we all have our own opinions; once educated about all contingencies, we have to make our own conclusions. For myself, in your cases and in your place, I would follow the PCP guidelines, but I am not you.
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lealonnie1 Nov 2020
Come to think of it, my mother was refused a colonoscopy when she had a bad case of ulcerative colitis at 86 years old! The GI doc said it was more dangerous TO do the test than NOT to do it! You are very right about the false positives which lead to anxiety and MORE tests.
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My mother survived both breast cancer and malignant melanoma in two locations. She was never given scans of any kind. She was over 70 with her cancer diagnoses.
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cherokeegrrl54 Nov 2020
Are you sure she never had any type of scans?? I worked in oncology for quite a few years and those type cancers got needed scans, no matter their age. I worked in a very large multi disciplinary clinic and maybe thats the difference.....
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Most insurances will not cover the outlandish cost of a PET scan because it won't make any difference. Both Parkinson's and dementia are terminal conditions. Dementia, however, must be diagnosed. It is not in itself a disease nor a true diagnosis. It represents a collection of symptoms caused by some underlying condition or disease. It has over 70 causes so you must find out the cause so you know what you're dealing with. Today with all the tools a physician has at his/her disposal, a PET scan isn't necessary. MRIs, blood work, cognitive tests, family history and psychological tests can be administered to determine the cause of the dementia with almost 95% accuracy. So forget the PET scan and have her PCP refer her to a gerontologist or neuropsychologist.  A PCP is not trained to make this diagnosis.
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rovana Nov 2020
I am wondering if the PCP addressed the pain issue?
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Ilov, you are clearly worried about your mom's pain. Did you talk to the doctor about the pain, rather than asking for a diagnostic test that is not indicated for her symptoms?

If the pain and the lack of mobility are what have you worried, ask about that.

Don't leap to a cancer diagnosis (and there are lots of tests to do for THAT before you get to a PET scan) without ruling out the more mundane causes.
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ILovMyMom Nov 2020
I get personal calls from my parents PCP and my Mom’s Parkinson’s doctor. I never leaped to cancer first. But when you have been in the ER twice in one month before 6 am both of those where UTI’s and I thinking that would solve a lot of problems. Then the constipation kicked in and she has medication for that. We have to make sure she takes that with her V8 juice daily. That helps her some. Sometimes she says she has taken it and it didn’t. Her Parkinson’s and Dementia doctor saw her while still on antibiotics from the UTI and said there really wasn’t anything he could until that cleared up. But He thought Botox would help with the pain in her ankles and feet. The nausea he said all her medications for Parkinson’s, Dementia and breast cancer side effects unfortunately causes nausea. I told him she only eats a palm size showing him mine which is small of food for each meal. He told her she needed to try and eat more especially taking her medications. He gave her muscle relaxers, and nausea medication to take.
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Contact her oncologist concerning the pain. Tell him/her she is complaining about pain. Your not really considered cured until 5 years. Your Moms breast cancer could have spread. It only takes one little cell.
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ILovMyMom Nov 2020
You know, I never thought of that. Next Wednesday I am taking her to a vein specialist and they are doing a test on her legs, ankle and feet. Her Parkinson’s and Dementia doctor thinks it is just her Parkinson’s and she needs Botox shots in her ankles and feet but his opening wasn’t until February 2021. Sigh.
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My Mom is 84 and has had a number of follow up Petscans in th ten years since her breast cancer was first diagnosed and treated. Her oncologist will likely schedule another one in January.

Her insurance is Medicare Kaiser HMO. She does not have Parkinson's or dementia.

Is your Mom able to follow the directions for the test? There is a lot of not moving so that normal activity doesn't light up on the test.
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ILovMyMom Nov 2020
My Mom has good days and bad days. If it is a good day she could do it. However, after speaking with one of my sisters she doesn’t think I should request one. She thinks it’s best Mom doesn’t know. It’s really hard being a caretaker and satisfy my 3 older sisters.
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I had a PetScan last Monday, for post cancer dx. They aren't invasive at ALL, in fact, they're actually very boring. I fell asleep, waiting for the contrast to move through my body.

BUT--they are very expensive and a dr wouldn't order one up just b/c a patient has a random pain. During my cancer TX I had so many tests--the PetScan just being one of about 8.

Also, I walked down the hall after the PS and had a mammogram. Both scans show different tissue, I thought the PS would cover all the bases, but it didn't.
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ILovMyMom Nov 2020
I have had a PetScan myself. That is how they found out I had thyroid cancer. My Mom had breast cancer last year. Thank you for telling me about your story.
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Are you serious? I have heard that some places are tightening up about helping the elderly. I consider that abuse and neglect.

Medicare still pays. There should not be a problem.

Take your mother to another doctor,
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ILovMyMom Nov 2020
I feel like you do that it’s abuse and neglect maybe even Discrimination against their age.

Then I read one comment below that said Parkinson’s and Dementia are both terminal illness so what is the point. The point to me is seeing my Mom in pain and in so nauseous every day she eats like a bird.
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Sadly I ran into this with my mom’s previous doctor. As her Alzheimer’s worsened the care for her worsened too. After many frustrating times I found a geriatric doctor. The difference is just amazing. I hope you can find one for your parents.
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ILovMyMom Nov 2020
My parents do see a Geriatric Doctor. Thank you for your response.
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I would contact her oncologist about her severe pain. If you know her pain is bad, please dont wait. With either of the diagnoses, it can metastasize to brain, spine, lungs to name a few. Plus there is no reason she has to suffer. I had a similar situation with my dear sweet MIL. By the time the dr did scans and she was diagnosed with bladder cancer, but it quickly metastasized to her brain and other organs. After almost 1 year, she was admitted to hospice and passed away in 6 days. I also lost my husband to pancreatic cancer that had metastasized to his lungs and other organs. He lived only 3 months from time of diagnosis. So my experiences are what makes me tell you to contact her oncologist immediately.....prayers and blessings coming you way!! Liz
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I want to thank each one of you for your advice, personal stories, and good lucks. You are all truly a Blessing. You all help helped me understand a lot better what is most and I thank you all for that! God Bless you all Caretakers! Our jobs are not easy, but our parents took care of us as infants into adulthood. They have gone from adulthood slowly back to teens then babies. It is tough to watch, care for and emotionally draining. I see my therapist once a week and I cry most of that hour. They time I let my guard down. Thank you all again!
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It is an utterly INAPPROPRIATE response from a MEDICAL PROFESSIONAL to say a test is "frowned upon to do that on someone her age. " Had a doctor said that please to me or a LO it would have been our last visit.
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I definitely think they weigh the need over the impact more after a certain age. And also when patients have certain types of diagnoses. Sometimes even when a treatment or test is warranted they have to weigh the outcome vs the impact. Sometimes the treatment is worse than the disease. And sometimes the more invasive tests can cause more problems. It is important for them to weigh whether a patient has a good chance of surviving the testing, and whether the testing is going to change the outlook for the patient. That's hard when the 'patient' is someone you love.
My dad had a primary doctor for a very short while who was very young and did have an ageist mentality. Way before my dad got really sick, his then primary decided that dad was 'too old' to worry about and that his time was better served with younger patients. Now let me say that my dad passed away at the age of 72 and it was several years before this that his then primary decided that since dad was retired he should just 'enjoy his last days and not take up the reserves of the doctors'. (he didn't say those words but something to the effect of a couple of dad's underlying medical issues weren't really worth addressing because he was as 'old' as he was). That particular doctor was reported to the practice and is no longer there but is probably still practicing.

On the other hand, sometimes doctors have to put their foot down with some patients for their own good. (not saying that is OPs case). My FIL will absolutely jump at any medical treatment, especially a surgical option. He seems to believe that there is some magic treatment for the damage that years of uncontrolled diabetes, living at over 300 pounds, no physical activity, and a myriad of other diagnoses that can reverse all signs of aging and disease. Compounded by his narcissism, because he can't possibly have anything to do with his current nearly immobile status, he is always looking for some way out of it. And his doctors have stopped ordering unnecessary tests or treatments, much to his chagrin. His latest is that he needs knee replacement. He is 86 years old, 300 pounds, generally unhealthy, non-compliant with rehab, his philosophy is 'no pain, no pain'. But he is so angry that his doctor(s) won't even entertain the idea. They have told us he won't likely survive the anesthesia or the surgery, and even if he did, he would likely never walk again because the recovery would take a lot of work on his part that we already know he is not willing to undertake. His last stent in rehab for a minor fall found him discharged from the rehab at skilled nursing home level and deemed 'not rehab-able'. This was also borne out in the fact that his home PT, OT, bath aide and nurse time were extended due to COVID and he actually LOST some mobility due to his non-compliance.

So I do think that some doctors may limit what they are willing to do for those over 75 (my 94 year old grandmother had hip replacement several years ago, so it really depends on a number of factors), but I also believe they have to choose their patients wisely for a number of tests and treatments because they have to have a good chance at the expected outcome being positive to even warrant it in the first place. Sometimes a treatment can make things worse than they were before (we've been there with FIL as well).

I do think there should be something to help them with pain, that one should be non-negotiable where it is within the doctor's power to address it. That level of pain can impact so many other areas of your life!
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Depends on the insurance they may need prior approval--insurance determines healthcare, not the doctors
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With any test or treatment there is a "Benefit VS Burden"
For example. Your mom at 75 with Parkinson's and Dementia.
1. It would probably require having to put her under anesthesia or at least a very heavy sedation for any test. the resulting sedation can make dementia worse for a while and her cognition may not return to pre test condition. AND if the test came back indicating any type of cancer would it be worth it to put her through treatment? And if you did put her through it would she understand why and would she again have to be sedated to get chemo or radiation? (I am not sure I would want to go through that and I don't have Parkinson's or dementia)

If you wanted to push this you could contact the insurance and ask if it would be covered and get approval. But I do not think it would be wise to put someone with dementia through tests like that. Would you want them to have a colonoscopy? That was a test that my Husbands doctor asked me about and I looked at her like she was crazy. My Husband was 68 at the time and I said there was no way I was going to put a person with dementia (and me) through the prep and the sedation for a test like that. If it came back indicating cancer, I would opt to not put him through surgery.
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At a certain age, it's the higher risks of what might happen during the procedure or a complication. Then there's what was already performed & done, and what the next step of that order of procedures.
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You should have asked the Dr why it was frowned upon.

My thoughts is if your in the Hospital there are way too many Tests and Procedures done that isn't necessary.
Usually older people do not get operated on unless it was an emergency because their is more of a chance that they would die from the operation than what is wrong with them.

Also tests, MRI's, Cat Scans, PET Scans, ect are too hard, uncomfortable and stressful for the Senior and is useless because nothing would be done from what the Tests may show anyway.

You already know your mom has Parkinson's and Dementia and she is in pain.

Even tho Insurance Companies including Medicare will pay for test the Dr's think are necessary. You need to know what would be the use of taking them.

If your mom shows to have Bone Cancer, it's not like they're going to operate and at her age I'm sure she wouldn't want to spend her last days being horribly sick from Chemo and Radiation when the outcome would be the same, and that's death.

Ask the Dr if it's time your mom should be on Hospice Care or something else.

the main thing is to try to make and keep your mom comfortable.

Even Arthritis, which everyone gets is painful.

Just talk with her Dr and have her meds checked and adjust the pain Meds.

Hopefully she can spend her last time of life in her own home and not in a Senior Home where no matter how lovely it may seem when viewing, if you put her there, it will make her feel unloved, lonely, depressed, scared and she will lose the will to live and eventually die alone.
Praters for all
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It is not about age. I think you PCP may be concerned about whether or not she could comply with the instructions for the procedure or if she has a contraindication. Consider getting a second opinion. It may be time to shop for a PCP that specializes in geriatrics.
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I'm going to "speak" from the other side of the fence. I am 81 years old. I recently had reverse shoulder replacement surgery, and have completed recovery, 9 weeks of immobilization of my arm, sleeping on a recliner the entire time, not able to fully shower and dress myself, not able to fully prepare my meals, just re-heat. I had a caregiver come every day to help me take my immobilizer off, watch while I did my exercises, and help administer my eye drops, help with showering and dressing. I could have had them do housework, cook meals, laundry (they did occasionally), but my place is small and not much housework to do. There was a minimum # hours I had to have, so a lot of money used for them to sit around. Again, I could have had them do housework, but I also have two ladies come in to clean every two weeks. I think I should not have had this surgery, I should have just lived with this pain in my upper arm and shoulder from a fall a year ago, rather than go through the pain and immobilization I have had these last 9 weeks. I spent several thousand dollars for this care. The sling is off, but there is slight pain. It will take me a year to get well, and I still may not be able to use that arm to the fullest. I wish I had given this more thought and talked with more people before agreeing to the surgery at my age, but the year long pain I endured from a fall, of not being able to raise my arm to comb hair or put on clothes seemed too much, so I agreed to the surgery. It was not fully explained to me the recuperation, and now I will also need physical therapy. Luckily I can still drive to that. Having said all this, I think if I had the illnesses posters have indicated in this thread, I would not have the surgery their doctors are recommending. Remember, think it through, think of the recuperation, think what the patient has to endure, will the patient need complete care, toileting, showering, feeding, will that person be any better with the surgery or without. I think I should have endured the pain of holding a hair dryer rather than endure the recuperation from this shoulder surgery and ongoing pain for the rest of my life.
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rovana Nov 2020
Good post. I think a lot of opinions depend on whether there are co-morbidities and how the treatment proposed would mesh with them.
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Sadly, the short answer is yes. It's not just age but co-morbidities. If it were purely based on risk, I would understand, but apparently, an accurate diagnosis isn't so important to the accountants. You're right, how can one provide the best care, even just palliative care, if one doesn't know the diagnosis. My dad was denied a PET scan that an equally ill person who was 10 years younger would have been allowed. I found it incredibly frustrating because I didn't know how to make difficult value judgement concerning his condition when the condition had not been identified. The lesion on his brain could be cancer or nothing. The PET scan was the only safe way to determine. His care definitely suffered as a result. Not to get political, but as long as we move to more socialized medicine, this will become more common, not less.
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Beekee Nov 2020
Don't be surprised if your comment is removed because of the term "socialized medicine."
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If a person is elderly and has dementia, their brain is already dying. If that person is also diagnosed with cancer or some other catastrophic disease, the treatments can be stressful and painful.

The tests can also be stressful for someone with dementia. Some tests require anesthesia, which can exacerbate the dementia.
Why take a test to find out that your loved one has a disease that requires painful and stressful treatments or surgeries? Why would you put your loved one through all of that?

And, why prolong the inevitable?
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Medicare pays regardless of age for things they cover, however many doctors quit ordering tests just based on age. General practitioners generally reach a point, and don't hesitate to say, why put her through it at her age? (Which is crazy to me). A one year survivor of breast cancer should continue to get whatever tests an oncologist wants done until the patient passes the survival rate standard for that particular cancer. (Different kinds of breast cancer).

Don't ask family dr about these things, ask the specialist. It may also be time to find a geriatric doctor.
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MaryKathleen Nov 2020
my2cents, I don't know if you have ever had chemo or not. I have. If cancer rears it's ugly head on me again, I will not put myself through that again. This poor woman already has Parkinson's and dementia. Both will kill her anyway, why put her through more pain and sickness? Too there is the Chemo Brain effect. It is real and I still suffer from it many years after taking Chemotherapy. Adding it to dementia would not help her.
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Nope .. find another pcp!
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So what did your mother's PCP have to suggest when it comes to investigating her pain and planning her care?

Ruling out one possibility ought to be the start of a conversation. Not the end of it!
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I think so. I think our medical system needs to be re vamped for older people. With Medicare my mom can only be in the hospital 3 days. They send her back to nursing home and she is back in hospital 2 days later dehydrated ... UTI.... NH can’t make her eat or drink but she will at Hospital. Our system is putting no value in older people who have worked for 40 to 60 years. Paid in and are not getting the care they deserve..
this has got to change! Why shouldn’t an 80 yr old have a scan? Who is to say one life is more valuable than another. Shame on US...
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rovana Nov 2020
I do not entirely agree with you because older people did pay in, of course, but did they pay in enough to cover years of very high cost medical care? Many people's lives are being extended - think open heart surgery, ventilators, etc. etc. that simply were not around in the past. So in a real sense, what you paid in was not really enough to cover the type of care that is now available. I'd like the opinion of a licensed actuary on this subject.
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I am guessing it is the system. IS her provider affilliated with one particular hospital system? Find a provider in another and get a 2nd opinion. Better yet, connect with you local Alzheimer's assn. or connect via a support group meeting and ask others who have dealt with similar issues who they would reccommend. Sometimes there are elderhealth or geriatric or dementia/alzheimer's specializing practices that know how to work the system to the patient's advantage. And then again sometimes it is all about the $$$$. You are not alone in being frustrated with the medical world. I feel very bullied by it. They say they are non profit but clearly they want all the $$$ they can get.
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Imho, your next question directed to your mother's primary care physician should be something akin to - what are you planning to do for my mother's pain? I would not walk away without some kind of definitive plan. Also, I will not assume that your parents have a Medicare Supplemental Plan. However, as there are many plan "letters," this may be an option for them, if affordable. About to turn 74 myself, I pay no out-of-pocket costs, other than the monthly premium. Prayers sent.
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Sometimes you have to be a little bit of an a**hole to the medical providers in order to advocate for your parents. Doctors aren't god and while many of them don't like being questioned or for you to get a second opinion, too bad. If this doctor won't do it, ask her oncologist or take her to an orthopedist. Get her involved with palliative care and request one from them. Pain affects quality of life and they need to find out what is causing it. It shouldn't matter how old she is, no one should suffer if it can be fixed or treated.
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