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DH has so many health problems including heart, kidney, partial facial paralysis, and many other issues. He is mobile and able to eat, but sleeps a great deal and thankfully is not yet needing Hospice. The problem is there are so many doctors and they aren’t coordinated. One will prescribe a heart medication and one will say to do this procedure and another one will say to get an MRI, but then another will say don’t get an MRI etc, etc. There are so many conflicting decisions to make my head is spinning and I just don’t know what to do. Does anyone have any suggestions?

notgoodenough's post is helpful. While it's great having tools like Portals or whatever this MyChart is, these are only as good as the information that is posted into them. Some docs don't write enough - I've seen doc notes that are primarily like a cheat sheet to remind them of whatever it is, NOT something useful to anyone else, including us. Delays in posting test results (or not posting them) isn't helpful either. If tests were done and a portal is in use, follow up with doc may be needed if results aren't there.

A good PCP should be able to coordinate all the input from other docs, provided they give the information. Unfortunately all too often we have to keep track of everything and ask a LOT of questions, even more questions after getting answers. I've had these issues with regular docs, specialists, for me, my children and my mother. I've even encountered those who visibly and verbally deride another doctor's recommendations or diagnosis! Wrong diagnosis happens too. It even extends to veterinarians. I sometimes have to bring relevant information to their attention!!!

So, make a list of everything. Prioritize what you can (for instance, heart issues would be more important that something like facial paralysis, depending on the cause.) Draft ALL your questions and leave room for taking notes on the answers. If the answers aren't sufficient for you, PUSH for more information. Sometimes the answers are okay, but bring up MORE questions - address those too, either at the same time or if they come up later.

As notgoodenough says, question what the purpose is for any procedures or medications recommended. What will the test look for? What do we do with the results? What will a medication do for him? What outcome would be expected from tests, procedures, medications? What would happen, potentially, if the procedure or medication isn't used?

Medications can be reviewed with a pharmacist (best source, as there are so many medications and problems with interactions that not all docs will be aware of them - some pills can be crushed, others can't, some will negate the effect of others, so someone who is more qualified should review all of them. They can also answer questions about what a medication might do to help, what side effects might happen, etc.)

If the current PCP can't handle this coordination, it might be time to find a new one. Your or a LOs health and care is more important than hurting some doc's feelings. I wouldn't hesitate to find a new one. I've read plenty of comments in the past that recommend geriatricians. If that's an option, it might be a good idea to find one. Depending on where one lives, they might not be available or not be very close to where we live.
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Lfcare: Imho, all of your anxiety can be avoided by signing up for the patient portal, e.g. in this case, for your husband. You could begin with his primary care physician on the patient portal online and all specialists including medications, lab values and test results would be included, making it very easy to manage, once you have your account established with user name and password assuming you have access to a computer.
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cherokeewaha Sep 12, 2021
Portals are great but, EVERY doctor that is allowed to use it has to be in the same health group. My husband has to see his pc, a cardiologist, an eye specialist for glaucoma and a neuropsychologist. He has dementia and having all of them on the portal works great if they would post on it regularly instead of waiting 2 or more weeks. His neuropsychologist isn't in the same group and neither is his eye specialist for his glaucoma.

I opened a note page in my Iphone and added every medicine with it's strength, when he takes it and the doctor who prescribed it to the page. Now when he sees his doctors, I simply pull that page up and hand them the phone to check meds. If one changes, I make the change and show the date. I don't worry about them seeing the phone since I am with them and I don't use it for bill paying, emails, etc. Strictly for family/friends contacts.
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His primary care doctor should be the person to ask any and all questions about your husband's care. Make sure the person you usually rely on is a medical doctor - not a physician's assistant, not a nurse practitioner, and an alternative medical care provider. You want somebody with an M.D. after his or her name to manage his overall care. That is the job of your primary care doctor.
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My husband has a GP for routine stuff, but his cardiologist is in charge. ALL med changes, additions, deletions, MUST be run by him for approval. Also any procedures requiring holding meds, giving associated drugs, sedation, etc. must be cleared ahead of time by any other doctor with him. This is because his heart is the most serious life threatened problem..
You must be assertive about this, & speak up at the time there is a conflict. Who's the DR. in charge?
I'm a tough, old retired RN.
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Reply to Momsmokaboy65
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Start with looking for a teaching hospital or a clinic that has a variety of practices in it. I use a teaching hospital and the coordination is wonderful. One set of blood tests that everyone has access to, if one orders MRI all can see, any test or medication you get are all visible to each and everyone involved in your care. No duplicate testing. I also make 3-4 appts in a single day and just spend one day seeing everyone. Saves on parking costs and me trying to find coverage for an elderly parent.
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Cover99 Sep 11, 2021
Good idea, though seeing so many people in a day can be tiring.

Tried that seeing my podiatrist, getting blood drawn, and going to my PCP to get a prescription signed , Was convenient, but tiring.
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My husband has a lot of serious medical problems, too. My advice is to start a notebook (if you already haven't) and take lots of notes (with dates) every time he sees a doctor or is hospitalized. I'm on my second notebook and it has been a lifesaver (literally once during one hospital stay where staff is in constant flux and communication isn't great). I save space in the front of the notebooks for doctors' names, contact information, etc. I also keep an updated copy of all his medications and doses in a separate paper that I fold in half and clip onto the notebook since his meds and doses are always changing. I find that most doctors are willing to answer questions and listen to what I have to contribute when I'm organized this way. I try to write questions to ask ahead of time since there is so much going on during appointments that I would probably forget to bring up topics of concern. Good luck!
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Cover99 Sep 11, 2021
MyChart makes this so much easier.
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I have no answer to this problem. I have the same issues. Would love to hear what others have to say.
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Cover99 Sep 11, 2021
MyChart.

All doctors seen are in one place, and you can send messages/e-mail them.
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As a geriatric nurse having over 30 years in acute and long term settings I saw this time and time again! The lack of coordination among providers proved challenging every day - So much so that I decided to spend the remainder of my career helping people like yourself untangle, coordinate and navigate care as a senior care manager. I’d encourage you to find a care manager in your area to help you!!
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Myownlife Sep 11, 2021
This may be a good idea for me to look into. I am an RN with 40 years in numerous settings, have been home since the beginning of the pandemic and taking care of my very healthy 96 y.o. mother. But am beginning to think about "getting back into it", just not sure "what".

For years, what you describe has been an issue. People do not understand, doctors have blinders on. Each specialist does his/her one piece of the puzzle, and a person is expected to do what each says, often conflicting advice and orders. They do not communicate with each other.

In the hospital, (and nursing homes), they write or enter progress notes, and each often does not review previous notes. Follow-through in a "timely" manner often does not happen.

In our own situation, Mom had frequent UTI's last year. What would happen is, either on a regular visit with labs, or often when I noticed symptoms, and have her get the urine done. It would wind up being toward the end of the week. The dr's office is open only till 12 on Fridays, so if it was positive, dr wouldn't know until earliest on Monday, and often not until Tuesday, maybe Wednesday. So there goes all that time, without an antibiotic. Finally, after the 4th UTI last year, I discussed with Mom's NP and said I really think she didn't have 4 separate UTI's but never recovered completely from the first. So finally a stronger antibiotic was prescribed, and for a longer time. It worked. And she prescribed enough that I could keep some on hand.

This year for nine months, no UTI's, until now. I bought the UTI testing strips and have checked periodically, usually based on symptoms. However, this time, no symptoms. So I've become a bit lax in checking strips. A random UA for a regular check-up, and lo and behold, positive.

I know this because we have an online Quest Lab account, and I am notified of results to be reviewed. So, yesterday / Friday lab done. Results available this morning. Positive. I've already started her on the antibiotic. No waiting for at least 3 more days to start on it.

But many people do not understand the seriousness of untreated UTI's and do not recognize the often-lacking symptoms in seniors. And by the time a person who has a severe UTI and is recognized and diagnosed, often because of a hospitalization, it can be too late for antibiotics. They become critical, septic and die.

Luckily, I am an RN and my mom's "best friend" and more importantly her ADVOCATE. Many do not have this. And even those in ALF's and nursing homes may go undiagnosed for awhile due to lack of symptoms, or, especially if there is a lack of continuity of nursing staff, symptoms, if any, go unrecognized.

So, I think your position as a geriatric care manager is a great one; and I very well may check into this. Thank you for your posting!
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Interview several doctors - preferably those who are part of a group with other doctors who specialize, like doctors groups in hospitals. Explain the situation and needs and see if that one doctor can coordinate these things for you. I know it does get confusing but even though I am going to be 88, I handle all of my own affairs 99.9% and never have any problems in any way - if I do, I get the answers at once.
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Reply to Riley2166
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With MIL, we had conflicting orders between heart doctor and primary care doc. Heart doctor eventually pointed out that when trying to address issues with multiple organs, the heart needed to be given priority. That made sense to us and helped us know how to proceed.
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Reply to annandpaul1629
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Usually the Primary Care Physician (PCP) should do the overall patient medical oversight. Lacking that, the other doctors take priority with the current emergency situation at hand, like a Heart Doctor. Otherwise, the POA should exercise oversight, and involve the appropriate doctors, as needed. The bottom line is the determination of medical necessity. Like is a MRI going to help DH? Is is it to just to check things out (again.). When was the last one done and what did it show. There is a such thing as Poly-Medicine (too many drugs) and Poly-MRIs etc. (unnecessary procedures.) Maybe you need a second medical opinion through another PCP or Medical Specialist?
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Myownlife Sep 11, 2021
Right, the PCP should do it. But, at my PCP, they didn't have the results of some of my other specialists tests, and didn't follow up with getting those results before my regular scheduled appointment. Now nothing was earth-shattering, but this meant, they again had to try to attempt to retrieve before my next visit, another 3 months. So what they should do is not always what they actually do. So. So a person truly needs to be on top of it, with getting copies of their own tests and such and carry with to appointments.

And that is something that many people cannot do or don't think about.
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You have to here all the Dr's out and write down the important things of what to do and not do then when another Dr says something different, write down his Do's and Don'ts and discuss if there's another way to get the same results ?
If it's meds, always tell tour Pharmacists if this pill is ok to take with this pill
You can also Google about anything you want and get the answer.

Praters, the Patient ALWAYS needs an ADVOCATE, Especially if their in a Hospital.

Hospitsks want to do way too many tests and it's up to you to talk with the Dr or ER asking questions if why a test is needed,, what tge test will tell and what would the options be if tge test was positive. Then you decide and agree or disagree which ever tests you want.
In the end, it's your body and your decision.
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Myownlife Sep 11, 2021
Exactly! When you can no longer be your own advocate, you need someone else. And many, many do not have that.
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Recently, my husband’s gerontologist suggested using doctors that work for the same university research hospital. He said they coordinate better. If you are able, can you switch to a university research hospital where he has a care team? Also, I have a notebook that I take to all of his doctor appointments where I keep notes about what the doctors say so I can refer to them during the appointments. It’s been helpful.
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Ricky6 Sep 11, 2021
@Jsaada5757: My LO always had doctors and hospital stays at a research University Hospital. I felt that situation always inherited a second and multiple opinions with other doctors and interns for treatment. However, in more recent times I was not satisfied with the peer medical “group think.” It seem to me that the hospital came first and the patient was not the top consideration.
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My mother belonged to a healthcare practice that supposedly had a central system that coordinated all her info. But I still went to every visit with a notebook filled with all her info and printouts of her medication info. It never failed that the nurse or dr had missed some derail or neglected to familiarize themselves with her file.

Sadly you have to be your own advocate when it comes to the complex world of medical care. The best thing you can do is create a binder with tabs for each dr, keep notes for each visit. Then when she has an appointment scheduled type up the results of the most recent visits and present them to the dr so he/she has all the most pertinent info.

I have found too, that many drs don’t like you questioning their judgements or orders.
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MyChart.

There is a feature where medical records can be requested and sent to the MyChart account to look at.

I have an account and it has been very helpful. You can make or cancel appointments, see what times and dates are available, and do the aforementioned request for medical records. I think they all also have the e-mail feature where you can e-mail a doctor or specialist online.
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Honestly, decide what's most important -- quality of life, or quantity. Quality ensures comfort and minimal doctor and hospital visits, while quantity requires endless tests, more drugs, and more time going downhill without ever quite getting there.

I decided my mother's heart and dementia issues weren't going to be cured, so we got rid of the specialists and stuck with just the geriatrician who served her nursing home. He knew enough about heart failure and all the other old age diseases to prescribe what was necessary, and I was more interested in her being comfortable and having socialization. I moved her from her skilled nursing facility (which was a placeholder until we decided what to do) to a memory care where she received the social stimulation she needed. She lived another 2 years (the last seven months on hospice), and I took her off all her meds except those for comfort care about three weeks before she died when it was evident they were no longer working.
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In my Moms case, I cut out a couple of her doctors or at least cut down on visits. I see no need for a Specialist once a the problem has been resolved or there is nothing more than can do. If stable, I feel the PCP can take over his care.

Write down the doctors he uses and what they do. Is there one doctor that can do the work of 5? His PCP maybe able to help you with this.

Ask his pharmacist if he/she can do a review of his meds. There maybe some he really no longer needs. My Mom was taken off of her Cholesterol meds when her enzymes got to high. I found with my Mom, when in the hospital they would increase her B/P medicine because she was in pain, but not lower it when she no longer was in pain. She could not get off the couch, why? Because her B/P was so low that she couldn't function. She was put on meds for a fast heart beat but that was corrected when she was treated for Graves desease. No need for that med. Nope, the PCP did not catch that one. I brought it to his attn.
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If he's going to the same hospital to see all these doctors, all they would need to do is pull up his medical file on the computer.
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This does sound difficult, but not insurmountable.

How old is he? What is his primary/worst health issue? This may help you figure out what to do and who to listen to.

I guess I would listen mostly to the doctor that is handling his most pressing need. Or the one that you feel is the most in alignment with your ideas too. Different docs will almost certainly give different opinions and have different treatment methods. I do a lot of research on the medical issues my mom has so I have a good idea of what to expect and what treatments are reasonable and acceptable.

Take a deep breath. Calm down. Ask questions and make your decisions. Don't 2nd guess yourself. As you see docs vary in their ideas for what is best to do, choosing X over Y isn't right or wrong, but an option for consideration.

Good luck.
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I would start by contacting your DH's PCP, and asking if they have a care coordinator on staff. My mom's did, but I didn't find out about her until she called to "introduce" herself after my mom had entered hospice. If no PCP, I would ask each of his doctor's offices if they have one; if one does, then they're the "winner".

Otherwise, if no PCP, you might have to "choose" a lead doctor. I understand completely the conflicting diagnoses...mom with CHF would be admitted into the hospital for severe edema and put on heavy duty diuretics, only to be told by the kidney doctor that the diuretics were no good and she should stop them...which would lead to edema/stress on the heart, and another trip to the ER/hospital admission for edema and more diuretics...ad nauseum.

Sometimes, you need to have a frank talk with the doctors about procedures/rewards. Example: "So, Doc, I see you're recommending an MRI. What are you looking for; what will be the recommendation should you find it, and what is the expected result should we pursue treatment? In other words, are we looking for a cure? Are we looking to improve quality of life? Are we looking to extend life, even if it means painful procedures (such as chemo)?" Make each doctor explain to both of you what that doctor is trying to accomplish. Ask as many questions as you need to; insist on a realistic picture of what any sort of treatment will look like!

About a month before my mom entered hospice, her cardiologist wanted to put in a PICC line to start her on a cardiac medication called Milrinone. He described it as a way to improve her quality of life. He led us to believe it would be a once-a-week infusion that a nurse would come to the house and do. Well, the night before mom was discharged, we found out it was a CONTINUOUS 24 hour drip that I would be in charge of monitoring and changing daily. My poor mother became tethered to this stupid machine which did nothing but tangle her up in her walker. After 3 weeks of this, she went to her cardiologist and in no uncertain terms told him she was DONE with this treatment (her exact words: 'This thing is a pain in the a**!). I wish I had asked many, many more questions before I just blindly signed off on that treatment!

Only you and DH can decide what results you want; I think you and he need to have a frank discussion about what he's looking for at this point, and then relay that discussion to any and all doctors involved in his care. If he's looking to try things to extend his longevity, then great; if he decides he's done, though, and only wants comfort care, then that needs to be related to his doctor(s). This is when you need to be an advocate for your DH's wishes; it's the most loving thing we can do for the people that we care about.
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GrandmaC Sep 11, 2021
I have nothing to add. This is by far the best summary of what you could do to help him. Good luck. My sister has to hire a care coordinator before placing her husband in a facility ( state requirement) at an additional $400 per month. If you can find one through your PCP that is great.
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Who is his primary physician? That is the person who should be coordinating his care. All reports should flow to the primary and they should be the person who reviews everything.

I am in BC Canada and my GP is my primary care physician. All reports are sent to her, lab and rest results etc. She determines which specialists need to see and makes the referral.

But here in BC any doctor I am referred to can access any and all lab or diagnostic reports that I have had. That means if I wind up in the ER in another community they can check my records.
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JoAnn29 Sep 8, 2021
You are Socialized Medicine. Does not work exactly like this in the Sqwtates. Too many different insurance plan and most u have to stay in their network of doctors. Sometimes you may not like the network doctor. If u go out of that network, you pay out of pocket big time. Then u have Big hospitals with their own community of specialists and doctors. If your doctor happens to be in that community then he has the ability to see ur records.
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