Will Mom's doctors ever communicate with me?
I am so frustrated that my mom's doctors never return my calls. I'm a long-distance caregiver, a nurse, and I have gone to mom's about every 10-12 weeks over the past year or so. I hear things from mom and try to contact her doctors, but they will not return calls. I have NOT been rude or a pest.
Her surgeon never visited her for four weeks after surgery, and she is still in the hospital, in a sub-acute unit for intensive IV antibiotic therapy. I repeatedly requested for him to see her, as we had no idea of the plan of care. I I asked the floor nurses, "Is it typical that the family must request the doc to visit?" They said "No". He finally visited her Friday, and told her 1) He doesn't come to that unit. 2) He didn't know she was still in the hospital 3) He did not know she was not doing weight-bearing on her (broken & repaired) hip yet. That's because he never saw her!
One doc tells us one thing, and the next doc say something completely different. There seems to be no coordination of care, and certainly no communication with me, even tho my name and numbers are posted on the front of her chart, and I am her health care power of attorney. She, herself, just does not know the questions to ask, or forgets, when they (rarely) visit.
I called her PCM on Saturday, requesting a call back, TWO times, at 10:00 AM and 4:00 PM. I held my phone in my hand all day. He never called. I called again Sunday about noon, and he finally returned my call about 2:00 PM. I went over my serious concerns with him, and he just verbally shrugged.
I just don't know what to do. I feel all alone in caring for her from 750 miles away. Any advice? She lives in a very small town area.
I am so sorry you are going thru this and at least can validate your feelings.
My Mom was in hospital or long-term for almost 3 months earlier this year--prior to that in robust health, but had a terrible adverse reaction to a (bad) generic BP med. Before I could get out there, I was trying to call but found I had to repeat critical information over and over. Was puzzled when each time the nurse would ask 'so how long did she smoke?'--were they not talking with each other?
When on site I realized they are 'putting (billing) info in' to laptops but don't seem to look at the information AND no longer apparently debrief one another at shift change..and then the doctors ended up with a more watered down trickle of information and in some cases did little to learn more.
I and my brother did end up having to go out there and I would park myself in her room at about 7am, all day into the evening to 'catch' specialists--most were friendly enough (I think in part because she had someone there?) and would ask a few Qs, volunteer information BUT did not seem to share information with one another or her doctor, who obviously felt odd man out because a GP. Their views sometimes contradicted each other leaving medication decisions etc up in the air. Months later, we're still not clear does she now have serious heart condition or is it lung etc.
Then hospital waited til brother left to return to drive back to his state one day, to try to discharge Mom--still on oxygen, with heart racing, without her GP's knowledge?! I had been worried about just that and happened to call her when she just found this out--so scurried around telephonically to alert her doc. Hospital then said would have a 'coordination' meeting with caregivers re next steps--but didn't tell or include her doctor and timed it so neither brother nor I was there after having spent weeks waiting for just that.
During one of my visits, they released her while still obviously quite ill and she ended up being re-admitted 2 days later. All along the way, assumptions and then decisions were made by health care workers NOT communicating even with each other, not using their d--- electronic records, etc. and not including the patient, family or her (wonderful) doctor in discussions or decision-making if they could get away with it. And this btw was a highly rated hospital.
The worse to me was the damage to Mom's self-esteem--in her worse moments health-wise she remains a highly intelligent woman, though at times she was too weak to express herself as well as normal. She also really does hate to complain, so if she does I know something is truly wrong.
But too many times, she was ignored, talked over, etc. even with me sitting there -- at a couple of points she caught critical medication errors, but they only did something about it bec I happened to be around and I was of course listening to her. One jacka--- specialist not even related to her case woke her up at 2am to ask her some bit of trivia, then when she asked who he was, callously said 'I've been here before, don't you remember?' I only wish I'd been there.
And though sometimes I was listened to, it was often with obvious resentment. My brother, normally maybe too easy-going, found himself going up and down the halls trying to find someone to connect to on Mom's behalf, bless his heart. As you have found, there is a delicate line between being seen as a pest but also making sure they don't ignore or worse, harm someone you love. I spent a lot of time myself cultivating the professionals I could find who would listen, did care, and tried to get our questions answered. I praised very highly when there was anything to praise.
I know from first-hand how hard it is to deal with this long-distance; in my case I was able to get out to her, twice in a few months for several weeks but frankly worry now because she wanted to go back to living on her own (in our case, luckily with a caring doctor).
I am wracking my brains trying to think of something that could help you. One thing I've done sometimes is FAX requests especially to a doctor--as you know, many offices still use a fax a lot, it gives them time to process what you are asking or saying--and it documents your attempts to communicate. This last I think has sometimes helped in getting a call-back; or I have called them after a few hours or the next day, referring to the fax. In my case I assume I will not get the doctor on the phone but have found some decent nurses to talk with; occasionally have had the sad feeling they are trying to help on their own.
It sounds like there is not the option of another physician in that small area...I wonder if it would help when you are there to talk to the social worker (case worker?) just to get a sense of who else might be able to watch out for your Mom when you are not able to be there.
Please know that you and she are in my thoughts--Cassie
Dear "Will Mom's doctors ever communicate with me?"
My first impulse is to say it sounds to me as if it may be time for your mother to be moved closer to where you live. That's just my opinion...
Barring that, (or even in the event of that,) I must say that in my experience you can't expect to be treated as part of the team if you are not suited up and on the field for every game. Period. None of the other players will take you seriously. He!!, they won't even recognize you!
Until the time comes when you MOVE your mother closer, you have to do a few things. For one thing, hire an elder care attorney to write a letter to all your mother's physicians and health care providers introducing YOU as her health care proxy and point person. Follow this up with a WARM, FORCEFUL letter of your own expressing your seriousness about filling this role in your mother's life, and request COMPLETE COPIES OF HER MEDICAL FILE from EVERY PHYSICIAN who is treating her, or ever has treated her - for anything - as well as requesting that they copy you on notes, correspondence, appointments, etc, from any and all FUTURE contact with her. Do the same with her local pharmacies, hospitals, etc.
THEN you will have a file. ONCE YOU HAVE A FILE - start calling. Call with questions. Call regarding overdue follow-up visits. DON'T call to "talk to the doctor." CALL FOR INFORMATION. Get to know every doctor's staff members. MEMORIZE their names. Send them cards and notes. ACCEPT INFORMATION from THEM. Then, when you really NEED to talk to the doctor, personally, they will see to it that you get through.
Don't worry about being a pest! Serving you is part of the job. But BE a person... Ask about how their day has gone. Tell them you're calling long distance. Ask about the weather. Ask about their families. BECOME a part of THEIR "Medical Practice" FAMILY - and your mother will become part of it too.
Last, but not least - CHOOSE - ONE doctor - the one whose practice specialty is most critical to your mother's health, and ASK THAT DOCTOR IN WRITING if he/she would be willing to serve as your mother's "primary." If not, they may be too busy. But don't be discouraged. Instead, call the office and ASK that doctor's STAFF for a referral to a really GOOD internist or geriatrician with whose office they've worked. They'll tell you the truth about EVERYONE... And if they can't point you in the right direction, (or even after they do,) CALL THE GERIATRICS DEPT AT THE HOSPITAL. Ask the Head Nurse On Shift which INTERNIST is MOST CONSCIENTIOUS about following through with nagging the specialists to take care of HER patients. See if you get a common referral from both the doctor's office and the hospital. If so, you have your primary. If not, call BOTH referrals and see how each feels. Either way, you are better off with 1) a woman doctor, and 2) an internist.
THAT'S the doctor you want. (And yes, it usually IS a woman...")
p.s. Your primary should act as the "conductor," orchestrating all the specialists to make beautiful health care music for your mother...
My Mother was discharged from a hospital in Tulsa, OK when she had a stroke in the hospital!!! and it was a Friday and the Doctor did not return the call. He had discharged her earlier that morning. At 6:00 p.m. we were forced to take my mother to her home.
I live in California. I went to Tulsa as soon as I heard that she was in the hospital. She was in the hospital for pneumonia.
Although she had a caretaker organization that had been helping her when she arrived home, she should still have not been discharged from the hospital!
The doctor's office called to find out if she was going to her scheduled appointment and I told them that she was not in any condition to go to their Office. I did have to have her admitted to another hospital.
The best advise I can give as a result of my experience, is to make sure you know WHO THE HEAD NURSE OF THE HOSPITAL IS because she is the ONLY ONE THAT CAN HELP IN ANY SITUATION!!!! The doctors are TOO BUSY!!!
I did talk to the Head Nurse after my mom was home. She was most upset as to what happened and I know she was sincere!!! My mother should never have been discharged... Hope this helps you.
Your problem is not unique and it certainly if NOT limited to trying to deal with your mother's medical team, especially her doctor(s). I have experienced more of this than I even care to think about in the last year. A simple example of this is my trying since last week to get a follow up appointment with the surgeon who replaced both of my hips within a four week period. My only contact with this man was glimpsing him briefly before I lost consciousness in the OR. I am told this is not unusual. On my follow up visit....if I am ever able to arrange one...will be with his PA. When you call his office for an appointment you get a recording telling you to leave your name and number for a return call. No one returns your call. Many people have told me this is typical behavior for a surgeon. Until quite recently I had a card carrying nut for a PCP. I had to be near death from an incorrect medication before we finally located another doctor. He is farther away, but it is worth the drive. The first doctor ordered unnecessary tests repeatedly and so close that my insurance company will not reimburse the charges. We live in Houston Texas and have a splendid Medical Center, but the city is crawling with kooks and quacks with MD behind their names. I have many close acquaintances who will tell you the same thing, and most of their stories are worse than mine. Doctors not returning phone calls is not unusual. They don't even return their patients' calls much less calls of next of kin even when that kin has full medical power of attorney.