Help me not lose my shit with healthcare workers
June 9, 2024 12:09 AM   Subscribe

My parent is at the mercy of an under-resourced, toxic, fucking atrocious hospital. I was civil for the first week and I am starting to crack. Help me keep it together enough so that as POA I don’t get kicked out.

It’s just a terrible hospital. Has been implicated in financial mismanagement, doctors themselves are unhappy there per news.

I would sign him out AMA for the bottom-drawer quality of their medical care and take him to a good one

EXCEPT he needs an MRI and those are exceptionally difficult to get in our non-US system, it is scheduled for early next week.

Every single day something fucked up has happened and I’ve had to be ON the staff to do their jobs.

- had to beg the ER doc to order a chemistry panel that ended up showing kidneys were failing.

- had to beg them to hold a BP med that the outpatient cardiologist held (verbal order not communicated to pharmacy so med was still on list) because it had been lowering BP dangerously for the past couple of months; hospital ignored me and gave it to him anyway.

- had to explain to second attending doc that parent has diastolic heart failure and that not being on diuretics is the reason for SOB that reappeared after diuretics were held. The diagnosis was established both at that hospital and the best heart hospital in the country. Current doc wasn’t sure about that diagnosis and went through all steps again to see if he really does have it. Worsening SOB and bloated belly were initially explained as age-related. Within the past 6 months, three cardiologists, 2 IM and 4 ER docs have agreed he has heart failure but THIS doc thought otherwise. Eventually a lower dose of diuretics were reordered but SOB is still evident

- UTI is treated then not treated then treated again because the lab keeps turning cultures around too early (per last week’s doctor, quote “the lab messed up”). So I have to beg for more urine tests. One doctor will order antibiotics, the next will stop them

- On admission, charge nurse ignored my warning that the catheter will be pulled out as parent was delirious and had done it in the past. That night I caved and had to sleep after 40 hours awake in the ER. Catheter was pulled out, parent may now be incontinent

- Hospital refused to hire a sitter for further risk of pulling out catheter or falls. Nurses refused to put parent near nursing station because parent “should sleep”. Doctor 2 refused to order soft restraints to prevent another catheter incident. Plan instead was to check parent every 30 minutes... Resorted to calling night charge nurse 8 times, eventually they agreed to put him in front of the nursing station. Multiple contacts with patient relations about this. Three days to return calls, meanwhile I had to bother new nurses about this every night until the catheter was removed

- Doctor prescribed overly high dose of quetiapine despite failing kidneys leading to extreme confusion; I had to ask to lower the dose

- Nurse did a bladder scan incorrectly (eg recent PVR records are at 200-380 ml, random nurse gets 15 ml), refused to assess for UTI or call on-call doctor. Today my parent was fiercely hallucinating, unable to pee and agitated and I couldn’t get anyone interested

This is not a full list.

The MRI is needed for a spine problem (this was actually the reason we went. Paramedics took us to this shithole despite requests to go elsewhere. I couldn’t move my parent myself, took EMS 60 minutes with parent in the most excruciating pain I have ever seen in anyone. He couldn’t move an inch and screamed for 12 hours despite max morphine shots x 2 on, it turned out, failing kidneys).

So the MRI is very important and would likely not be ordered soon enough elsewhere. Had to beg for that too btw. The UTI/kidney problem got picked up while in ER (because I asked for the test based on a vibe) for the back.

I’ve been at the hospital daily for ten days and I am starting to be rude due to impatience with staff. Which does not help my parent obviously. It has been a nightmare. I fucking HATE dealing with personalities, I hate having to convince people of anything much less have to beg or bully them to do their jobs.

How can I find a way to be civil given all that’s happened and how shit this hospital is? (Again this is not the US. Single payer system.)
posted by anonymous to Health & Fitness (12 answers total) 2 users marked this as a favorite
 
If you can, maybe gifts would help (flowers, fruit, candy, doughnuts).

Also: if you can bear it, maybe try being emotionally vulnerable instead of angry. So, talk about how sad and worried you are, and exhausted, while also making it clear that you are 100% competent (lest someone assume you're wrong about something due to over-fatigue or over-emotion).

Man oh man do you need allies. I'm so sorry you're going through this. I'm sorry your Dad is going through this. It sounds absolutely awful. If you can possibly get _someone_ else from your family, or your Dad's neighborhood, or something, to join you at the hospital - that would probably at least let you sleep a little better when you can.
posted by amtho at 12:45 AM on June 9 [7 favorites]


Is there any sort of patient navigator, patient advocate, or such, available at the hospital? You need some help.
posted by kschang at 12:48 AM on June 9 [1 favorite]


Is there any sort of patient navigator, patient advocate, or such, available at the hospital? You need some help.

That would be my first thing to check. Ask at the information desk if such a thing exists, and if they don't know what you're talking about, ask where people can go to complain. (On reread I see you mention talking with patient relations - was it the highest level at the hospital?)

I don't know how things work where you live, but is it possible to bring in an external doctor privately for a "second opinion"? Are you able to hire a sitter privately?

Probably a long shot but (especially if you're in a small country) maybe put out a call to people you know to see if somebody knows somebody (who knows somebody...) at the hospital.

I’ve been at the hospital daily for ten days and I am starting to be rude due to impatience with staff. Which does not help my parent obviously. It has been a nightmare. I fucking HATE dealing with personalities, I hate having to convince people of anything much less have to beg or bully them to do their jobs.

Any chance you could bring them something tasty to eat and try to reset the relationship slightly? Ideally you want to get them to see you as the faithful, loyal, sweet child who just wants their parent to suffer less, who they want to help, rather than as the annoying know-nothing who's on their case who they want to be adversarial towards. Easier said than done, but that's what solved a similar problem for me with nurses once (not with doctors, though, unfortunately).
posted by trig at 1:26 AM on June 9 [2 favorites]



Probably a long shot but (especially if you're in a small country) maybe put out a call to people you know to see if somebody knows somebody (who knows somebody...) at the hospital.


In my experience (both as a doctot myself and as a frustrated family member of a patient) this really works. At least in the system I'm in, having a staff member from the same hospital show interest in a patient (letting the staff know they are a family friend) can work wonders. A few years back a family member was treated badly in another hospital in my city. Turns out the spouse of a coworker of mine works there and he dropped by her room to say hi from me. It was almost embarrassing how the staff's attitude changed immediately. And it was a very distant connection.
If there's any chance you know anyone at any level who works there, I wouldn't hesitate.
posted by M. at 1:42 AM on June 9 [14 favorites]


Depending on the system, they may also be expecting you or any non working women in your family to be the sitter. In my underfunded EU system (same as M., I recall) in a highly rated university hospital a relative was recently expected to provide all the food for an ailing nonagenarian - there literally weren't enough hands available to feed patients who couldn't manage it themselves. Of course that doesn't explain the med errors, though some do sound like people too tired to provide proper care.

Another thing that may help is explaining your father's quality of life before the current crisis and expected family lifespan (if significantly longer than his current age). Hospital staff may be writing him off as not worth the effort and it may be a different treatment if you can get it to them that he's still active physically or intellectually. Especially for very old people, staff tends to see the current incoherence and assume the worst.
posted by I claim sanctuary at 2:40 AM on June 9 [9 favorites]


Another thing that may help is explaining your father's quality of life before the current crisis

Seconding this. Helps them see the person behind the patient in room 201. Also helpful: get well cards or children's drawings on display by the bed. Cynical but true.
posted by M. at 4:49 AM on June 9 [8 favorites]


fiercely hallucinating, unable to pee and agitated

Just to validate what you're seeing, this does sound like a UTI to me, and the catheter is probably a factor in that situation. The hallucinations were always how I used to know that my father, who had a catheter long-term, had another UTI.
posted by limeonaire at 8:18 AM on June 9 [2 favorites]


n-thing the idea of chocolates or similar for the nurses. Also helps to create something non stressful to chat about and remind them you're human.

We did this when my mother in law was stuck in a terrible hospital with very similar problems.

Also, if you can find moments for self care and quiet, private destressing to recharge your batteries. This stuff is so hard.
posted by Zumbador at 9:08 AM on June 9 [2 favorites]


This is so tough, I really feel for you and your parent.

Not sure where you are, but a friend of mine in Canada went through something similar with her mom and got a lot of help from this company which basically acted as a buffer between her and the hospital authorities:

https://www.canadianhealthadvocatesinc.ca/

She said it was not cheap, but was worth it. My quick Google search showed several agencies offering similar services, so if you have cash to throw at this, it might be worth checking one of them out. Similar services probably exist in other places, too.
posted by rpfields at 10:41 AM on June 9 [3 favorites]


Do you have a spouse/partner/friend who can come help? Having a second person to voice issues may help act as a buffer between you and the staff. They can also play the good/bad cop counterpart to your role, depending what the situation calls for. It would also give you some time to rest without being the only person to monitor your parent’s care.
posted by bluloo at 11:37 AM on June 9 [3 favorites]


Take some rest anyway, even if you don’t have someone to sit in for you. It sounds like your loved one won’t die in the next 24 hours. It’s ok to take a break, regroup, strategize outside of the hospital environment. Spend time outdoors. Give yourself a good 16-24 hours away from the facility, you’ll be a better advocate in the long run if you pace yourself.
posted by shock muppet at 1:48 PM on June 9 [3 favorites]


find a caring direction to lose your sh*t to mitigate the likelihood it will come out at the healthcare workers. wherever you can, get support for your mental and emotional health. this is such stressful work for you on top of whatever amount of familial stress you have that your parent is in hospital. can a friend meet you for lunch, or someone (preferably outside the family / outer circle) be available for a call while you grab a coffee at the hospital?

i’m sorry this is so f*cked. “loosing it” it a completely human response to the situation.
posted by tamarack at 9:51 PM on June 9 [1 favorite]


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