Is it illegal to stop administering prescribed non-life saving meds to someone w/dementia? Her body's alive, brain is dead, what's the point?

Hello,
So sorry for this situation-it is painful to watch a loved one go through this disease.
I agree with Carol completely. Another option is to request that your mother be seen by a palliative care specialist. Hospice is a form of palliative care, but hospice is restricted to patients whose physicians certify that they are likely in the last 6 months of life. This is something over which you have no control.
Palliative care more generally, is for anyone with a serious/life-limiting illness. Dementia definitely qualifies.
Although far too few dementia patients receive palliative care-it is absolutely appropriate for your mother.
A good palliative care physician will work with you regarding meds. And you can make a good argument that the more meds you mother is on-the more likely she is to have a complication/unpleasant side effect without demonstrably improving her life.
Best of luck
Margaret

I see what you are saying here.

When my mother in law was signed up for hospice they took her off of all “maintenance meds.”

I do wish they would’ve allowed her to stay on her thyroid medicine because taking her off of it made her a bit confused (she was completely coherent before that.). The rest of the meds wouldn’t have helped her in the long run (Lipitor, etc)

So I think if something is helping her quality of life, like an antidepressant or anti anxiety drug, let her stay on it. The rest can go.

Thank you for all of your insight. Although mom is still mobile and feeding herself with coaxing, we did call in Hospice. They offer care for late stage dementia. They also provide all of her medications ( synthroid & zoloft) except the vitamins, aricept and namenda. Her regular doctor's nurse is also a Hospice nurse, so it is an easy transition.

Well, I agree with you 100% but that doesn't make anything legal! Perhaps another member can comment on that aspect.


Lipitor and Zetia are for managing cholesterol. I'd say so what? But they also help prevent a stroke. (A stroke is a "brain attack" and often does not result in death but in major disabilities.) Under the circumstances I'd say a stroke is worse than a fatal heart event. After talking to a heart doctor I kept my husband on his cholesterol medications until he went on hospice.


I suggest discussing this with the prescribing doctor. If you still feel you don't want her on those drugs, ask the doc to discontinue them. Do you have healthcare POA? If so, it should be your decision.

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Oh dear. I just realized this question is from 2013! I wish these old posts didn't accept new responses!

Stopping meds without consulting your loved one’s doctor could be misinterpreted as “denial of care” or “ endangerment” or “neglect” by Adult Protective Services. Be careful...we hadthat drama too

My friend recently had her husband transferred to Hospice. The standard for Hospice for people with dementia was that he had to be in a Stage 6, I think. His physician had to certify he was in the last stage. At that point her husband was nonresponsive, was not swallowing, and he did not live much longer. I am not sure of the details, but it would be pretty easy to find out by calling a Hospice near you. Another friend came to our state from her retirement state for Hospice with her cancer. That was because it was much cheaper here than in Florida

Has your mother been considered an official “hospice case”? For us, once that happened, only care that prevented pain/increased comfort, not prolong life, was to be administered. Yes, we had some blowback from APS for stopping Namendaand some other drugs, including all her vitamins (my husband had difficulty letting go of giving her that stuff...and it was really just making her body work harder) The doctors are in the life saving business and often cannot manage their role in terms of end-of-life care.
At the end, when my MIL consistently refused food and mist drinks, we were criticized for not making the meal and trying to feed her, too. It was disturbing, and we are still very angry about being treated like we were not providing proper care for her.

Donnalee, it's interesting that you mention constant burping. My mother started doing this about a year ago, but I recently noticed that, if she's occupied, even just watching TV, the burping stops. Anyone else seen this in a loved one?

Namenda and Aricept only have about an 18 month -24 month window of efficacy. Extended use is for maintenance to slow the progression of dementia, but not eliminate it.

In light of someone mentioning constant belching, you can check the patient for h.pylori through a simple breath test ordered by the doctor. I had h.pylori because I tested positive and returned to my doctor after the acid reflux and esophagus swelling became the next stage, which would be constant but very deep belching coming from deep within the stomach lining because the infection bacteria live deep in the stomach lining and let off a gas, which will test you positive for the infection

My Mother is 87 she had a heart attack just 1 1/2 wks after my Father died. They gave her the typical medications and SO overdosed her she was a little zombie she did not want to eat and she just wanted to sleep. We had to watch her closely. We did finally get some of the medications changed and eliminated. But she really doesn't want to take them. I have to really encourage her. She wants to be independent but she really isn't!!! I just think you have to use your best judgement and also talk with the Dr.

I totally agree with you. This is one of the things that I'm not taking on, and that's the micromanaging of my mother's medications. She's 84 w/dementia, very private, non-trusting, uncooperative, and non-compliant w/doctors anyway. Always has been. What's the difference what her cholesterol numbers are at this point? She's been on high blood pressure meds for ages, and still has high b.p., so, honestly, what's the point? If she takes her meds, fine. If not, so be it.

Rackem, on balance I'd say you and your sister were right to challenge the statins, and certainly if you are both comfortable about it then stick with it. I agree with you that at some point some medications become pointless to the point of daft. And I admit that I have some qualms myself about having persuaded my mother to agree to the pneumococcal pneumonia vaccine: now that she is facing AD as well as vascular dementia I'm beginning to think that wasn't my brightest-ever move. But there we are, the doctor can't take it back again.

The only thing is - and this is more for others to consider than you and your sister - controlling heart disease, stroke, osteoporosis and so on in comparatively fit elders with dementia is still something that must be thought through thoroughly. Perhaps it's even that the physically fitter the person, the harder the decision becomes. Because what if a heart disease or stroke maims but doesn't kill? Both of these can result in extreme, chronic pain as well as the risk of death. And not treating osteoporosis? How is it easier for a person with dementia to endure fractures? - I don't understand.

I realise that it sounds as if I'm holding out for a nice, peaceful, comfy kind of death for my mother, like anybody is ever given any choice about it, and I know that makes me Pollyanna. But I just wanted to make the point that doctors prescribing apparently irrelevant meds aren't necessarily doing it out of habit or aiming to prolong life at all costs. I think we, as caregivers and family members, should always feel free to ask what purpose is being served; but I also think there is probably/usually is a good reason behind most prescribing.

Thank you to everyone for their input. It seems that it was also a good topic for this site. First of all, I would say, my mom is 78 and is nowhere close to physically dying. She has NO memory of actuality. She exists in a very nice ALF that is located in our home town. I live 800 miles away. My only sibling (sister) lives about 45 min from mom. I see her a couple of times a year. She is physically fine. When I go and visit her, I can observe close up, because she doesn't know who I am, nor my sister, who sees her more frequently. She seems to just hang around. Unless someone approaches her, she doesn't even speak. I will tell her I am her daughter and then she pretends to know who I am. She does realize that I am from the outside, because then she starts to tell me that she is eventually going to get out. That she doesn't know why she has been put here and that all she wants to do is live her life. I know she doesn't really know who I am because the next thing she says is that she has 5 kids who live elsewhere, but they are too busy in their lives. We are only 2 and we were both sitting with her. She does have a Living Will and a DNR. She is on Abilify (for be too billigerent, nasty and angry, a godsend), Namenda & Aricept (for the dementia, worried that taking her off these would cause her to need someone to feed her and wipe her butt), Boniva (she suffers from painful spinal compression fractures) & Synthroid (Thyroid issues and the doctor says removing this would probably have a bad effect on her mood.) She was previously on 2 statins. I called the doctor and ended those. The doctor's nurse's tone indicated that she didn't appreciate my request. When she called me back with the doctor's orders, she was much more sympathetic. I'm not saying that the same thing is going to happen, but my dad was sitting in a restaurant having breakfast when he had a massive heart attack. Even though the folks in the restaurant tried to keep him alive with CPR, he was dead before the ambulance got there. I'm thinking this would not be a terrible way to go for my mom. I think she would rather this scenario than even what she has now, much less what is guaranteed for her future. My sister and I are at peace with our decision.

I think realistically if the body can not metabolize the medication, what is the point. I think all of our loved ones toward the end of their lives will not be able to utilize their medication. I have carried for members of my family and others. I think that often toward the end of life when they are not eating medications cannot be metabolized. I would encourage comfort measures and also ALL the ice cream they want....

Rackem, the MD will keep writing prescriptions until she says NO, STOP. That's his legal duty to give her what she needs. The ALF is legally bound to give her whatever meds the MD ordered. My MIL wants to die on any given day, but refuses to sign a DNR. Figure that one out for me, will you? Unless you are the Guardian, or DPOA, there's not much you can legally do.

Sorry I have not read all the answers on this thread but have very strong views on this subject being a retired hospice nurse.
First of all "Do no harm" That means not force feeding unessessary pills to the dying and I do stress here the dyng. Grinding up a vitamin pill is not going to make anyone more comfortable. It is really a question about whether the patien takes the meds willingly, wants to continue or will have nasty side effects if they are stopped as in the case of anti epilectics. It is a process of selection and some may need to be tapered gradually. The steroids for the brain tumor of course should not be stopped and are in fact often started near the end of life. Pain and anxiety meds should be continued as should anti nausia. pain meds are still necessary even if the patient becomes unconscious, the pain is still there.
Just because a Dr prescribes something he is not giving an order that is unlawful to disobey. But please don't stop things out of ignorance or because a family member says you should. Hospice nurses routinely review a patient's medications and with the approval of the caregiver will request the Dr to stop them. If the patient really needs something there are often other ways that it can be given. pain medications for example can be given by, mouth as a pill or liquid, injection (not recommended) IV rarely in the home, patch or as a suppository. it is important tcheck whether or not something is safe to crush and mix in jam etc. Some are long acting and will give a 12 hour dose at once and others have a bad taste such as prednisone. Sorry if I have repeated other answers but let common sence prevail.

I'm guessing your mom does NOT have an advanced directive (living will) Are you at least POA? If not, idk But in answer to your question, if it were MY mom, I'm 99.99% sure Daddy would VERY reluctantly ask to have her under Hospice care & just let her go...Now this answer is if you do NOT have POA or living will. I she DOES have living will, then follow her instructions, as heartbreaking as it is...

It is insidiously cruel and wrong to prolong the life of a person whose mind
is turning to mush. It is so hard to watch them mentally waste away yet their
bodies keep struggling along I always pray that God will gently take my M I L
in her sleep, which is what she wants. It is not a quality of life anymore when
they lose everything that made them a viable vibrant person and they are reduced to a helpless miserable being.

and my answer number 64 above, which focus on Alzheimer's / dementia because that was my experience in my issue, I just wanted to say that as far as I'm concerned, I would make the same comments about any terminal illness.

My dad's doctor felt that way about him. I was happy to stop some meds, like his statins and a couple BP meds, but I also think he underestimated my dad's quality of life. Dad had probably fronto-temoral dementia and retained his personality. He was in skilled nursing and they had a lot of affection for him, called him "the Professor" because he was always reading and saying odd but sometimes wise things. He missed my Mom even though they had not been all that good to each other in the last years together, and eventually came up with the explanation that he was in a religious retreat house and my mom and my daughter were planning to join him when they could. (He grasped that Mom was ill and trying to do rehab, and that I had to work at the hospital.) I went as far to mail him a picture of my dad sitting in his recliner and reading the Bible, pointing out that we both would probably love to have time to do that. So dad's pacemaker checks kept getting done and flu shots given and all that. Dad had migraines though and he would not believe me and treat those. And he decided on no more trips to the hospital but did provide IV antibiotics for pneumonia, which I also said OK to. My mom's quality of life was did not seem as good form my oint of view, she could not read or even watch TV and just kind of sat around people-watched; she really did not want to die though. When it was time for hospice I think they had the philosophy to just medicate round the clock and get it over with. I insisted they give her the meds that made her feel better, like for her heart, and her Sinemet so she had enough motor control to do a few things. They stopped her Ticlid though and I am still trying to figure out why I did not object; I guess it was a big enough deal to get the Ranexa and Sinemet back on board and to avoid antipsychotics when she had outbursts...or maybe because it obviously was not working all that well, she was having angina and progressions or her strokes despite it. I told her it was a different kind of hospital where they would really focus on trying to hel p her feel better and they would let us visit a lot more. She actually stabilized and we had a couple of actually nice days, and they had a longer term residential program we persuaded her to stay there, thinking we had maybe weeks or months more...she then had a really really bad angina attack and probably brainstem stroke and passed on later that week.

I guess I still think the best thing is to provide whatever medication gives someone the best function and quality of life, but not to hasten death...and realize that prolonging life and improving it may not be mutually exclusive. But when push comes to shove and they seem to be, I would also say go with quality over quantity in these circumsstances. A goal of just being alive as long as possible really makes no sense in this situation (and I'm not sure if it makes sense in any!) There were a few little things we would have liked to do, like go to the zoo and see the penguins, that we never did get to though and a little more time would have been good as long as it was not just nothing but suffering.

I can also identify with the family and young person with an inoperable recurrent brain tumor when the facility wanted to stop the dexamethasone that was keeping brain swelling temporarily at bay because "it will just prolong things" ...their reply was, "uh, that's what we want!"

skinonna addressed the point beautifully - are we prolonging life or prolonging death? IMO, "quality" of life should be a paramount consideration.

Our elders who have Alzheimers / dementia will never recover and will not survive. They are not likely eligible for hospice until they are considered appropriate by medical evaluation as being within the last 6 months of their lives.

Again, just my opinion, but I think a realistic talk with the doctor to stop the body saving medications will allow them to reach that 6 months criteria a little sooner. The Medical and societal mindset today is so often life extension which makes no sense to me when you're dealing with Alzheimer's or dementia.

Each individual and family must evaluate this for themselves on a case by case leve basis, ascertaining the elders functionality, ability to appreciate life and the families' capability to let the person go.

When it becomes crystal clear that there is no way out of this condition, that body saving medications are facilitating a crawl to the finish line, perhaps the decision can be made with a clear conscience to discontinue these medications and allow the patient a merciful and speedy your trip to the conclusion of this existence.

Living Will

A living will is another type of advance directive. It is a written, legal document where individuals can specify what sort of medical intervention they want (or don't want) if they are seriously or terminally injured or ill. Individuals can also specify if they want medical treatments to keep them alive, including feeding tubes and resuscitation. Living wills can spell out individual's wishes regarding complicated medical decisions at a later time when there is disagreement or confusion among family members. However, it should be noted that having a living will does not guarantee that doctors, hospitals, or family members will follow an individual's wishes.

A living will establishes in advance what the individual would wish regarding certain medical interventions and treatments.

my Mil is now 90, but several years ago, her dr prescribed a cholesterol med for her. I questioned if it was really necessary. He told me they were required to prescribe it if the reading was over 200(hers was only 215) he then said we can do whatever we want with the script, so I said great considered it filed, so he threw it away for me!

Chimonger thanks for the tips, I will check into a few of them items and maybe start her on them.
I will be having her checked for C-Diff, just can't figure out where she would have gotten it from, she has only been to the doc's on May 20th, diarrhea started May 27th. She hasn't been on any antibiotics for almost a year now. I an waiting for her to have another bout so I can collect a sample. Of course she hasn't gone since Saturday due to Imodium! I will keep everyone posted!

DonnaRae -- I would definitely have them check for C-Diff when you do get a sample. That is what Judy was hospitalized for in April. The ER was going to send her back home with me and I said "No Way". I can handle ordinary bouts of diarrhea but that C-Diff just kept coming.
Chimonger -- Never did hear of the mannose. I have been giving Judy the cranberry capsules since March, 1 at each meal. Saturday I increased that 2 to 2 at each meal. I have also been giving her the Jen-3 Probiotic because that is what the doctor recommended. It probably took me a couple years to figure out all of Judy's allergies, milk was the first one and I figured out a number of others. About a year and a half ago I took Judy in for her quarterly checkup and she was down to 117 pounds from 140. When the blood test results came back the doctor told me her fasting blood sugar was too low, down to 63 and she was starving to death.
My comment was, "That was not fasting, she probably had at least a thousand calories for breakfast, I am a big eater and she eats much more than I do and I weigh almost 200 pounds".
A few days later I wondered if soy might be the problem and I eliminated soy products. Almost everything has soy in it. It took almost a month in which she lost 3 more pounds but then she started putting on about a pound a week. It took me several hours the first several months in the grocery store because about 95 percent of the product being sold has soy additives. One night I made tuna and noodles for supper and she had a really bad night. The next day at the store I picked up another can of tuna and from force of habit, looked at the label. The number 1 ingredient was soy sauce.
I have become a firm believer in food causing many of the problems we are having. I have been trying to get Judy's gout cleared up since February so she gets the same meal just about every day until I get her regulated well enough to add some new things.
If you want to know more about her diet I can add that later.

I think we need to ask if we are prolonging life or prolonging death.

bobstitt1942

There are effective ways to deal with UTI's without using drugs.
And without bad side effects.

Please see:
d-mannose:


Cranberry juice concentrate, UNsweatened--usually in caplets,works well--if one gets enough into the system, and contains d-mannose, but some prefer D-mannose by itself.

Also, adding daily mixed Probiotics helps prevent infections, as it helps bowel health overall. It diminishes UTI's, vaginal yeast infections, and helps the body's entire immune function.
The Berkeley Women's Clinic used to recommend using plain live-cultures yogurt to relieve and stop vaginal yeast infections and reduce UTI's.
Something in the full-fat versions of that, soothes and helps heal the painful, irritated tissues too, applied locally.

Acidophilus, alone, helps reduce/stop diarrhea, is listed in the PDR, and can be prescribed by the Doc, and covered by insurance, I think
--some of our patients in the NH had this....though compound Probiotics were not on their list, a number of families brought those in for use. .

Carob powder, in milk or juice, helps stop diarrhea. The raw carob tastes sweet, and the toasted carob tastes a bit nut-like. I like the raw carob, and keep some in the freezer for long-term storage. Have mixed it into cranberry juice, and it tastes decent--but then, maybe my tastebuds are weird--!
Carob = St. John's Bread, of Biblical mention; it's been used for thousands of years for a number of things, including bowel issues.

A fat-heavy meal works like a laxative, and can cause explosive diarrhea--particularly if the person has not been eating much fats for some time.

A number of foods can trigger irritation in the intestines, resulting in diarrhea.
It might be worth exploring if she's sensitive to wheat, barley, rye...gluten containing foods. Or if dairy is the culprit? There are things being put into even dairy milk, that people have become very sensitive to, and now get bowel upsets from it, where they never used to. Same for Genetically Engineered grains and other GMO foods.

Sure hope you can find ways more comfortable--going through multiple episodes is crazy-making--so hard!
You are a saint to deal with it so long!!

Hard to hear of Docs doing as they have to your wife, these days....but guess it depends where one is--too many Docs are still clueless about some better, more humane alternatives/complimentary methods.
Hope you get things working better, soon! Hard enuf for those things to happen on someone who can take care of themselves, it's terrible for anyone who is impaired at all.

* there

I also feel the same way you do about Hospice. Angels ( well most of them). I stand in Awe of what they do everyday. Also all of you out there taking care of loved ones with ALZ . I only lasted 3 months taking care of my Mom ( put her in a group home ). You should put your Granny in a depend maybe? I took care of my Daddy ( he was a saint ). Not my Mother though. The sun downing and me , lets just say I don't care for that weather , everyday ( Huge Storm's) my Mother was having. Bless all of you doing this job for your loved ones . I stand in total AWE of YOU. They are LUCKY to have YOU all.