What do you do when disagree with doctors?

A few months ago there was a discussion about in home caretakers and how crooked they are. Well, it goes without saying that there are bad ones out there but just as many great ones. I feel the same way about doctors. My dad's doctors are wonderful, knowledgeable, caring people. When I had shoulder surgery I was given the name of "one of the best" orthopedic surgeons in the universe. I'm sure he has helped many people over the years but I wouldn't recommend that man if he was the last doctor on earth. Flip, arrogant, UNcaring man that I have ever met. Plus my shoulder is still messed up and that was 9 years ago. I did everything he told me and he just couldn't figure out why "I" wasn't cooperating and not getting better. Sooo, in my humble opinion I have learned you have to go with your instinct, get second opinions, and do your homework. This isn't the only doctor story I have but this isn't about me. It's about taking care of your loved ones and being their advocate when they can't do it for themselves. And vstefans.....thanks for the input and your 2 cents. Wish they would teach more about elder care in med schools.

My husband has Parkinsons (25 yrs) The biggest problem with hospitals is that they give medications on their schedule not his. I always insist that I give him all but his bedtime PD meds...yes, they say that's impossible but I say..I will do it and if you give him more you will overdose him! I fight them every day but I continue. They also (because of fear of falling) put an alarm on his bed so when I am there and get him up alarms go off...that's their problem altho I push the nurse call to alert them. It's all a matter of liability but I know we would rather have him fall than die from inactivity! It's really tough and with the last 2 hospital visits I have checked him out after 3 days (I know him with 24/7 care...they don't) Yes, we take a chance but I also know there is something to quality of life. Every time after checking him out he was back to his normal within 4-6 hours. I now have a reputation at the local hospital for checking him out w/o authority........oh, well! As their advocate we really have to stand up for their rights as hard as it sometimes can be.

The more I read here, the more I find myself agreeing with Captain's view. Your dad has had a stroke and he' NOT on a blood thinner? My goodness, that does seem neglectful of someone not to have had that conversation.

Unless you have extensive medical training, you cannot possibly understand all the possibilities, downsides and upsides of each treatment. Yes, your risk stroke with certain blood thinners, but you also risk stroke NOT being on them. Yes, less is more in terms of meds for the elderly, but some meds bring better quality of life. I think we should all listen a little harder.

Had something like this happen recently. Dad's cardiologist wanted to prescribe some blood thinner, and Dad wasn't wild about the idea. Fortunately, I was there for the meeting.

I asked about side effects, and the doc said yes, there is a risk of stroke. I said something like, "y'all, he's had two of those already." Which he has, and I'm surprised the doc forgot about all that. But he didn't push that blood thinner any more.

Do I have POA? Well, kinda sorta. But the doctors know me, and my type-A, borderline pushy nature does help. So does stating my objections with a few well-placed questions.

@lindaz, yep, guilty as charged, I'm a pediatric rehab doc who got into the geriatric end of things when my parents lost their health and their faculties a few years back.

And, short answer is no, they did not teach much at all about dementia in medical school when I went through - they did not really KNOW that much back then - and even now, probably they don't do nearly enough. At UAMS we do have a strong geriatric presence and I think they do get involved in the med student curriculum, but familiarity with the legal and funding aspects (aka "systems of service") is still not great among students or residents.

You will still run into docs who seem to expect that everyone should respond to what I call cookie-cutter medicine, and just kind of get mad or frustrated and blame the patient when things do not work the way they are supposed to. Some, even most of us care deeply about our patients and will take the time and energy to think things through, revise a diagnosis or treatment plan and listen well...some of us are either burnouts or just never really cared enough in the first place. Those "80%ers" among us will meet the standard of care or practice that does work 80% of the time, but go no further. And they said if we ever stopped learning, we'd be at the bottom 10% of our profession in 10-15 years, but today its even faster than that, but some old curmudgeonly types unfortunately think ALL the old ways are better and common sense is all they really need. In their defense, you really can get burned by people who believe every d*mn thing they read on the internet or who have decided all meds are poisons and all therapies are scams, and right up front before they even know you as a human being they have clearly decided you must be getting kickbacks and withholding information and care for fun and profit.

Just my $0.02!!

i do not argue with docs , period . they need the best input possible from close family members , especially in phsyc medicine but to try to prescribe or reject medicines should be left to someone with extensive pharm education .
my sis tried to run the intensive care unit when mom was in there based on all the med tv shows sis has watched . i generously offered to have her tossed out of the hospital .
everything is based on science , bloodwork and federal guidelines . docs arent just taking wild guesses .

Hopefully, all is well with Sandy and her mom. I see where she posted on another board (thank you, CMagnum for the link).

There are forty good answers here, hopefully she'll be able to read them and go from there.

My only advice is not to be afraid of the drugs the doctor ordered. Like I said before, that particular drug is only ordered by a psychiatrist or at least that was how it was in both Massachusetts and FL.

And it helped my mother immensely despite the bad reviews it got from my 'kids'.

Everyone is different. What works for one may not work for another. But you have to give these drugs a certain amount of time to actually kick in. As they are kicking in, sometimes the side effects aren't so great. I'd give it a good three to four weeks, unless you are seeing something majorly wrong.

You need to rest while you can if she's still in the hospital. Also, do some homework, i.e., Google the name of the drug and try to look for references related to hospitals, not people's reviews. If you have concerns, do not be afraid to ask the doctor. S/he won't bite. S/he's a person, not a god.

I will be thinking about you.

You need to stand your ground on this. At the very least ask some very specific questions of the doctor: why the meds change, what will be the benefit, what is the reason for discontinuing previous medications, what are other alternatives. Good luck, dear heart. It is not easy, but you will feel better for doing your best to fight for your loved one's best interests. Make sure the doctors have that in mind, too, and make sure they explain to you why they feel it is right. Do not be afraid to seek out a second opinion, either. Good luck. {{{{hugs}}}}

Babalou, sometimes hysterics can be effective. One time I was visiting a young man with AIDS in a south Alabama hospital. He was in a lot of pain and his medicines were late. I went to the nurse's desk really nasty about it. The nurses got their butts in action. I reminded myself of the scene in "Terms of Endearment" with Shirley McClain at the nurse's desk. There is a time for hysterics when it comes to advocating for a patient. It can remind people what their job is and let them know someone IS watching and caring. The only thing is we have to know we're justified in doing it first. There can be a lot of complacency in some hospitals, so the wheels that don't squeak can get ignored.

Sandy 22 has posted under "discussion". The title is "excuse me". Sounds like she got upset by the criticisms of her typing.

It's a shame that we haven't heard back from the OP. I agree that communication is a two way street with doctors, to understand that doctors are seeing your parent as a patient, while our job is to be their advocate. In the original post, the patient is taken to the hospital (reason unknown) and her meds changed. Poster assumes that mom's decline is due to new meds, but the bigger question is, what brought her to the hospital? Was her overall condition worsening? Was there a reason for changing meds, like interaction with a newly prescribed med? Confusion, in the elderly, is often a result of a simple change in routine and venue, doesnt need to be a drug issue. My job with tegard to my mom when she's "in house" is to portray accurately what state she was in prior to hospitalization, ie, she was alert and oriented with short term memory loss and aphasia. Having hysterics in hospitals buys your parent poor care.

With regard to "experimenting" at a psych hospital, i believe what is being offered is in house psychiatric unit where they can trial meds to get the patient stable. Sandy, I hope things are going better!

There are some big egos in the medical profession vs.
There are also some big egos outside it.

Doctors' communication skills are generally pretty woeful (I blame their training - it seems to cover no middle ground between e.g. cryptogenic fibrosing alveolitis and "oo dear you've got a bit of a nasty chest there") vs.
They are often trying to explain extremely specialised concepts to people who have not spent four or five years in medical school.

They do not always apply their extensive knowledge and full concentration to a particular situation vs.
"When you hear hoofbeats, think 'horses' not 'zebras.'" In other words, their own clinical experience, lack of time and gambling odds all conspire to push doctors towards the obvious answer or the easiest course of treatment - so they jump to conclusions, and unfortunately that often means that they jump over us.

Particularly in the context of the forum, many patients a) have complex, competing co-morbidities and b) have a lousy prognosis. Our loved ones are likely to decline and die no matter how gifted, thoughtful, well-equipped and efficient their medical team. We need to accept that sometimes there aren't any good answers: the doctors may not be completely right, but that doesn't make us any righter.

Communication being a two-way street, we need to play our part by dealing openly and courteously with professionals while explaining our concerns as clearly as possible. But by and large, I believe it's wrong and self-defeating to ask for medical advice and then ignore it or overrule it. That belief is currently being tested to destruction - wish me luck and I'll let you know how this morning's telephone consult. goes!

Stick up for yourself and your loved ones. Docs are highly educated men and women, but they are just that - humans - and not Gods! Some are dedicated and devoted to helping people, and others are dedicated and devoted to making money and basking in the prestige their profession affords them. You may not be the most popular person in the place, but if you don't agree with something being done with or to you or a loved one, or if your own information or knowledge of a situation is ignored, you need to put your foot down and push until you are heard! I'm sure there are some files out there with a big capital "B" on them next to my name, but I really don't care... My 95 year old Mom lives with me, and even her Internist asked her what she’d do without me, and said she probably would have died several times in the past 4 or 5 years if I hadn't been so "involved" - read persistent, stubborn, pushy, nosy, demanding? Too darn bad! Don’t let anyone bully you or talk down to you. Insist they explain things to you in “plain English”, and not medical jargon. If you still don’t understand, ask them again and persist until you do understand. Don’t let them brush you off, bully you or condescend to you. Correct them if they misunderstand or dismiss something you’ve told them, and persist until you understand the issues and feel able to decide on your own what the right course is. Mom is blind (has peripheral vision from macular degeneration), has major mobility issues (uses a walker at all times), etc., but mentally she's pretty bright. I have to stand up for her, because she isn’t able to do that herself. I don’t care if she’s 150 years old – by God they are going to treat her just as humanely and thoroughly as someone younger. If she’s hospitalized, they are going to treat her as well as they would any other adult… They’d better respond if she needs the restroom, or soils herself, and not try to just diaper her and leave her (that was tried ONE time!) No matter how old someone is, they have a right to dignity and compassionate care! And they are NOT going to drug her up to keep her malleable and quiet, thus robbing her of her best tools to recovery, her mind and will. They’re busy? Short-staffed? TOO DARN BAD!! I’m NOT saying be rude, or unreasonably demanding, but you do have a right to expect good and competent care. Your hospital bill isn’t going to reflect otherwise, is it? Will you get a discount for subpar care? If people insisted on getting what they are actually paying for in the way of care, hospitals would have to actually provide that level. Anyway, I guess I’m getting riled up thinking about this, so… Just stick up for what you know to be right – listen to and believe in your “gut”!

Vstefans, I'm assuming you are a doctor. I do believe that doctors do NOT prescribe because they are getting a kick back from the drug companies...but why do they often NOT listen to the families of the one who is sick? My mom has recently died of Alz. and many of her "specialists" did not know how to deal with a person with advanced ALZ. They expected her to be able to answer questions and were terribly annoyed when my father an I tried to explain to them that she was unable to answer them....Do they not teach this in medical school or in residency???? Blessings to the doctors that understand, Lindaz.

I find one of the biggest faults with us doctors is we are too quick to assume things...by that I mean if an older person is not thinking or walking right, they assume it has been that way for a long time, and don;t think hmm, its a big change in function, maybe something had to have caused it that needs to be addressed. I have a few colleagues who just do not get it when it comes to recognizing and dealing with side effects and needs for lower doses in the elderly and those with low muscle mass. OTOH, very few of us get paid any more for prescribing more meds and any kind of kickback is illegal; in academic medicne we are not even supposed to accept drug company pens or lunches or anything beyond educational pamphlets. One factor that can be a real one is some qulity metrics look for the % of patients with a given condition who are taking the "right" medication for it, but that is mostly preventive medicine post heart attack or stroke, not psych meds. Zyprexa is an antipsychotic and can be either a Godsend or can have bad motor and cogitive effects, or both. Motor effects can be counteracted with a second medication if need be.

DO realize that most people do not get most side effects, or nothing would be left on the market :-) and keep a running list of definite side effects, especially if you can confirm them and they are to things that are most commonly used.

I think the reason you got questioned at first is that something happened that could have made someone ask if the previous meds were actually not working. I think all of us have had cases where the person thinks they are having a side effect but it is really the condition changing. I have people who come back after a surgery that was hopefully going to help their child walk - they may say something like 2 years ago my child was walking and now after the operation they can't anymore! But, what they are not remembering is that they had stopped walking and that is why they decided to have the surgery...it just did not turn out as well as hoped.

Get a second or third opinion.
I always question doctors when they give me a vague answer.
My Mom's kidney doctor had her on four different high blood pressure medications!
I ran out of one of them, and it made no difference in her high blood pressure level.
I asked the doctor if we could discontinue the medication since it did nothing.
She didn't have an answer, but wanted her to continue taking it.
I think they were more interested in pushing drugs and making money than my Mom's health.

Thank you, Llamalover.

It is not hypercritical to be request enough clarity to understand what has been asked. We all understand and forgive typos. The text does not have to be elegant.

You need to be the advocate for your mom....I don't know this med but if you feel the doctors are not listening to you, speak up! And if they still don't listen, contact administration! The doctors hate it when their bosses get involved, but all of our parents (or those we care for) deserve the best attention possible...not 5 minutes of the doctors time. God knows their bills are high enough, and whether we pay for the bills or Medicare does we ALL deserve the best of care. Blessings to you, Linda

You can still change the meds however unless you have a medical background discuss the effects of taking her off her current meds. Zyprexa is an antidepressant, so weaning her off should not be a problem, but again, discuss any changes with the doctor. I will tell a doctor my concerns since I know of my husband of 31 yrs., but I have the medical background to back up my theories. Get a medical/healthcare power of attorney so that gives you some authority.

Salisbury, I agree with you. Some of these posts are difficult to undetstand. The last time I said this, someone countered, saying that I was being hyper critical.

You have to speak up. I remember one time when my mother was in the hospital the doctor wanted to send her home, she wasn't even walking yet. He suggested we( my father and I) could get a Hoyer lift. I said absolutely not, my father was frail at that point and I insisted on rehab. Mother went to rehab.

Had my dad put on Ativan in the hospital and he got confused, went right to the Director of Nursing and got him off it.

Doctors sometimes need to be put in check.

I agree with Carol Bursack on this one. Since we lived out of town and my FIL was in charge of my MIL, he was trying to do what the doctors told him. Once we got to see what was going on and meet with the doctor, HOLY COW did he think he was ALL that and box of chocolates! He had her on so much medication she didn't know what, where or when. We got her out of the hospital and to a Elder care physician. He took her off of all meds except blood pressure and started all over. She still had problems but NOTHING like what this other guy had been doing. So it is very important to seek another opinion. If she is still in the hospital there is a social worker that can help also. Go with your gut on this. You are her advocate and she needs help.

I arbitrarily took my husband off Namenda two years ago. I felt no need to check with our doctor. He does better without it. Remember that the pharmaceuticals and many doctors are in bed together. I wonder how many physicians are on a cruise right now, compliments of the fat cat pharmas.

I agree with the theme of the messages here. Stand your ground--meet with the doctor(s) and firmly ask them why they are switching her when she was doing well on the other meds.You know her and care for her full time, they don't. Older folks do get confused in the hospital, so just to be devil's advocate, could it be that she is confused due to being out of her normal environment, or is it the new meds? I don't know the answer to that but it is something to bring up with the hospital staff.

I was totally against Olanzapine during the first week or two it was given to my mother. However, I had to health care proxy nor did I have POA so she was under the state's care while I was getting these two legalities straightened out. These medications were given by a Boston teaching hospital with a thoroughly trained geriatric psychiatric staff along with geriatric doctors highly trained. You are not going to get that across this country. I had to look far and wide to find one in FL (you would think they'd be everywhere, but I can tell you they are NOT. I'm talking about board certified doctors trained to care for the elderly. Far and few in between and to my dismay, not really graduating in the numbers I would love to see because the pay is so low. I found ONE in all of the county I'm in in FL (huge country, lots of people) SAD.

Anyway, as it turned out, this drug worked wonders in that it stopped the delusional thinking along with the paranoia that came along with her problem, age related dementia, higher than normal blood sugar readings (she wasn't taking her insulin correctly, and the list goes on).

It was when another doctor in another state (FL, not trained in geriatric psychiatry) told me the drug had been given to her for appetite, not for paranoia, adjusted the dosage to half that the problems began. I didn't go along with HIM, so I got rid of him and went to another doctor, who adjusted the medications again. BTW, in FL Zyprexa can only be prescribed by a psychiatrist

My children were totally against Zyprexa because of what they read on the internet. I, gave it a chance to work and work it did, now going on fourteen months. While she is now in a nursing home, she is somewhat aware, not paranoid or delusional anymore, and functioning well for her medical condition, i.e., loss of executive function, dementia, and the list goes on. She's in there because she fell, we placed in rehab, and I decided this was the best place for her given the social aspects, etc. While you need to keep tabs on doctors, you also need to trust them somewhat (SOMEWHAT). You need to ask intelligent questions and to do that you need to do some homework. It's not easy. My mother is going on 92. I've come to accept her time is limited given her age. I believe we have to also do that in order to survive caregiving.

1. Can you tell us what exactly is going on with your mother?

2. Why is she in the hospital?

3. What were her symptoms?

4. Why did the doctors feel the need for Zyprexa (generic form is Olanzapine)

Then we can go on from there.

JoAnn,
That's exactly why I insisted on more tests. I was worried about her having a "brain bleed". My mother suffered from a brain bleed that went undiagnosed for over a month because it did not show up in the initial tests....my step father did not care that her behavior had deteriorated as he was ready for her to die and so did nothing. I happened by for an unannounced visit and saw her practically lying in her plate and he said "Oh, she's been doing that for about two weeks now".... I won't go into the rest of the story on that right now and please fellow posters don't jump me for not being more aware of my moms situation as my step father wouldn't allow anyone in the home....I surprised him at lunch one day and could see her at the table,he was unable to tell me she was asleep and to try some other time.....
Back to my MIL, she had dementia and was in assisted living. She fell in the middle of the night but was able to get herself back in the bed. So casually mentioned it the next day to one of the staff. Since she was 82 they called the ambulance and the emergency dr ran a few tests and released her before I got there. A few days later, right back to ER, this time I was there for all of the tests and admitting to the hospital. Still I had to insist that she not be sent home after three days of "observation" and that more test be done. She never recovered and after four months passed away. She was under hospice care and got to live out her final days in her own room at Assisted Living. They loved her and she loved them, it was the best place for her final days.

No one knows her better than you do. If you are alarmed by the changes you are seeing there is a good reason to get her different care. My poor MIL was a basket case off and on, I was young and didn't know her very well, but started to suspect it was her meds. I spoke with my own relative who was an MD, got a referral for her who changed her meds. DH said it was the best 10 years of her life with the new Doc, he'd never seen her so clear. Go with your gut, you know your Mom.

Generally what works best is to be firm, polite, and persistent as you figure out what's going on. Either the doctors are not doing the right thing for your mom (quite possible, esp if they aren't listening to you) or what they are doing is reasonable but they are doing a terrible job of explaining their reasoning to you.

Getting help from the PCP or another clinician you know can help. Otherwise getting a friend or relative to support you is always a good idea.

Otherwise, you can do things like:
- Take notes on what's going on and who you talk to
- Ask repeatedly to talk to the doctor and say you are concerned and want to understand what's going on
- Ask to speak to a supervisor if someone is stonewalling
- Consider putting your concerns in writing and giving them to the supervisors of the hospital. Things in writing often carry weight, and they move up the management chain.
- Consider voicing your concerns on social media. I have found this often gets a very fast response from a customer relations team. Try to be diplomatic and constructive, it's better to say "I'm frustrated w XX hospital; can't get a clear answer on why they are changing my mom's meds" than "They're horrible and messing up my mom's meds!"

There are good resources at NextStepInCare.org re hospital discharge...I cannot remember the details but I think there are people you can call if you object to the care provided to a Medicare patient.

Good luck!!

Doodlebug, first thing that should have been check for wss a concussion. This will cause same symptoms as Dementia and can take up to a year to disappear. I started my Mom with a neurologist and he gave her a couple of EEGs to see how she was progressing.