How best to communicate with doctors?
December 25, 2012 7:50 PM   Subscribe

How do you advocate for the best care from three states away?

My father-in-law has been in the hospital for the last two weeks due to complications from gall bladder removal. Throughout the process, my husband has gotten conflicting and disjointed information about what has been actually has been going on. Partially due to the fact that his father is heavily medicated and his mother is extremely histrionic, everything we hear has been filtered through the crazy straw of confusion. We are five hours away and during the holidays we were able to be at the hospital to try and sort things out, but we've had to return home. On the drive back we received three hysterical calls from his mother claiming all sorts of madness with tiny seeds of truth and efforts to get her to think clearly and calm down only made things worse.

We tried to get the doctors to call us with new information, but my father-in-law has at least three different specialists and god knows how many hospitalists working on him. They don't seem to talk to each other and only tell their patient the bare minimum. He's scheduled to be moved to a different hospital "some time soon." Who can we call and talk to so we can be included in the loop? We don't want to cut his mom out of the loop, but we'd love to find a way to get the information without the crazy filter.

Everyone is getting insanely frustrated with the whole thing and its not helpful to hear that he's gonna "get his kidneys chopped out cause they keep bleeding!!" What steps can we take to add sanity and stability back to the process?
posted by anonymous to Health & Fitness (9 answers total) 1 user marked this as a favorite
If your FIL has multiple hospitalists, he must be admitted to a medicine service, therefore, medicine/hospitalist service is his primary service coordinating his care. You would want to talk to the hospitalist whose service he is on during the daytime, after they've made rounds for the day. There will be various hospitalists covering during off hours, but usually the day hospitalists only switch off every week and weekend. So try to get in touch with his hospitalist in the weekday afternoons (they round in the mornings, usually). Even though it may seem like the specialists don't talk to each other, they have to communicate, and they don't speak in person they must at least leave notes in the chart that can be read by anyone caring for the patient.

You can also pump the nurse for information - at a lot of places the same nurse will be caring for the patient over the course of time and they may have greater continuity of care. The nurse will likely also have access to the notes in the chart. You could ask them what the "plan" section of the note for the day says.

If there is something that you don't understand despite questioning the hospitalist/nurse, and you can't get them to explain it to you appropriately, ask them which specialist to speak to about it and ask if that person can be paged to call you. Your mom might be helped by a patient advocate or social worker. And if you aren't getting answers to your questions despite these efforts, you yourself may want to talk to a patient advocate.
posted by treehorn+bunny at 8:00 PM on December 25, 2012 [3 favorites]

Just to add to treehorn+bunny's good comment, many hospitals now have a "nurse case manager" assigned to each admission, and that person (where that role exists) can be the best source of information.
posted by Sidhedevil at 8:12 PM on December 25, 2012

There should be a 'Patient Advocate' at the hospital your FIL is in. A case worker. A placement specialist, etc. etc. Find them. If the MIL is as off-kilter as you suggest, the case worker will be more than happy to keep close tabs with your husband.

That being said, if it's that urgent - and if at all possible - your husband or a sibling if he has one needs to be there if his mother is not capable of providing quality oversight.

Been there, done that.
posted by matty at 8:16 PM on December 25, 2012


"How do you advocate for the best care from three states away?"

From my personal experience, you basically can't. Sorry.
posted by matty at 8:19 PM on December 25, 2012 [4 favorites]

Just ask your father-in-law to add you and your partner to the list of people able to receive information on his health care, prognosis, etc. My father was recently hospitalized for a possible heart attack and he added us to his list and we got a pin number to use when speaking to hospital staff about his condition. Get the information straight from the horse's mouth, not filtered through a third party.
posted by xyzzy at 8:20 PM on December 25, 2012 [1 favorite]

There are a lot of details missing here. Do you just want to be included in the loop? Are there some things your mom is saying that concern you about the care being given? Do you feel uncertain about the prognosis? Any details you provide could lead to better answers, and you'd want to write that list (of questions or concerns or just things you want to be notified of) in preparation for talking to medical staff anyways.
posted by nathan v at 10:29 PM on December 25, 2012

There are actually professional patient advocates/coordinators you can hire to help out. I had a friend whose parents had health issues, and since she was many states away she hired a professional advocate to help her parents through the process. Apparently this was a life saver.

A few links: the Alliance of Professional Health Advocates; a sample list of the services offered by the advocate my friend hired.
posted by raf at 11:27 PM on December 25, 2012 [1 favorite]

I camped out in my father's hospital room for a week when he had non-elective surgery for an acute condition last spring. Even so, I mostly got piecemeal, brief or very general information until he was actually released. Actually catching sight of his specialist was like playing whack-a-mole - it got so I was nervous about leaving the room. I learned that specialists' schedules can be unpredictable (even if they have rounds, they might be called away for an emergency - 9 am can easily turn into noon), and conditions, and decisions, can change quickly. At the hospital my dad was at, keeping family informed wasn't necessarily at the top of the priority list.

About three days in, a sympathetic night nurse walked me through some of his test results on the sly (but only I think because it happened to be a quiet night, she was sick of me, and I'd brought the staff doughnuts). I got slightly more informative updates after that, but it was only when he was released that we got anywhere near a full picture of what had actually happened. Less squeaky patients' family members were even more in the dark through most of the process. The physical and vocal presence of someone representing the family, I think, does help.

Does your husband have a sibling living nearby? (Frankly, your mil could probably do with a check-in too, because waiting for information in an apparently chaotic atmosphere while you're watching your loved one minute by minute is maddening. She could probably do with being tagged out for a night.)
posted by nelljie at 12:47 AM on December 26, 2012 [2 favorites]

It's awful but nelljie's experience is more common than not, in the U.S. at least. If this will be an ongoing thing, I would strongly consider hiring a patient advocate, or if his hospital allows, being put on the list for release of your father's medical info. If you want to receive your father's medical info yourself, it will be a big job to coordinate it all.

I feel for you, I really do -- I have a family member who is a highly unreliable narrator, and coordinating any health care through her is an impossible task. Best of luck to you and yours.
posted by lillygog at 7:05 AM on December 26, 2012

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