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?
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.
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.
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!
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.
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.
And that is something that many people cannot do or don't think about.
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.
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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