How to make dealing with hospital staff more bearable?

December 5, 2019 9:45 PM

My mother has been hospitalized for two weeks, it's not looking like she's going to return home anytime soon. It's become really frustrating and my anxiety has been through the roof. I guess this is a two part question. How to make dealing with hospital staff at all levels (nurses, doctors, social workers) more bearable and HOW can I be a better advocate for my mom, and myself? I want to get better at fighting for answers and not letting them get away with bullshit.

I didn't realize it until this situation, but I hate, hate, hate, hate even stepping foot in a hospital. I hate dealing with doctors, nurses, social workers, etc. I feel like they are always trying to dump everything on me for my mother. I feel like I never get clear answers from people, or know WHO to contact. For some reason, I always feel like I'm judged by doctors, nurses, etc. in the hospital for being... an idiot. Like, they don't respect me because I'm not a medical professional? I'm just a dumb daughter of a crazy geriatric patient, I guess is what I think they see?

For example, they keep jerking me around regarding when/if she'll be discharged. I was told that I'd figure out what to do with her after she gets a capacity assessment, okay... whatever. The geriatric psychiatrist has concerns about her returning home (but no diagnosis, funnily enough), so does some of the nursing staff, so do I to be quite honest. BUT then I get a call yesterday from a "casual social worker" (not the main one I've dealt with for the unit) telling me "we'll get your mother home care and do the assessment at home and we'll discharge her tomorrow!" In all honesty, I thought "GREAT!" despite all my mother's issues... she'll get home care, people who check on her, I don't have to worry about her house being vacant for a year while I'm out of town, whatever it will be ok for a year. If home care doesn't work, maybe we can look into assisted living for a year. Whatever, I was home free for my new job. THEN *AN HOUR LATER* I get a call saying "nevermind, we're going to do her assessment at the hospital!!!"

Then today, I get a call from the regular unit social worker who explained this bullshit situation in a way that DOESN'T make sense upon reflection. She was talking about "people" (WHO?) taking advantage of the casual social worker who covers for her, and pressure her to discharge my mother? WHAT? Then the unit nurse said the same thing and tried to validate this "mistake." Apparently it was no ones fault, blah blah blah. OBVIOUSLY it was SOMEONE'S fault that this jerk-around happened or not. Now NO ONE knows how long the assessment will take because the person who does these assessments comes in only on Friday and Tuesday... uhhh... so now she'll be in the hospital for another week, two more weeks? WHO KNOWS! Maybe I'm being unreasonable, but... why does no one know anything? Maybe I'm being petty, but this situation really, really upset me.

I know that my anxiety is making this situation 100X worse than it probably needs to be, but... I feel like there's been a lack of understanding from the social workers, in particular... that UHHH... I need to get some answers to plan for the future because A) this shit is all on me, there are NO relatives who can help, B) as a result, I need time to organize shit because I'll be HOURS away, C) I need to figure out what to do with her house regarding insurance (who I spoke to today, and because my mom still INTENDS to return... we're all good, for now), maintenance, etc. D) I want to start researching a place for my mom, etc. the social worker told me I'd have to buy a BED for her if she got recommended for assisted living and that everything happens QUICKLY, so how the hell do I make it happen when I'm not in town?! I need to plan!! No one seems to get that, or is even sympathetic that... this shit needs to be done outside of the hospital. In all honesty, I don't care if my mom ends up back at home with homecare or in an assisted living facility, but i desperately want to have a better idea of what's going on and start planning so I can be less worried. Is there a better way to ask for answers? Even if there are none?

How do I go into these interactions with a clearer head? How do I ask better questions? How do I deal with this bullshit and not go crazy??

posted by VirginiaPlain to Human Relations (13 answers total)

Is your mother in the hospital or a skilled nursing/rehab facility? If she is really in hospital and has already been there for two weeks she must be pretty seriously ill. In my (limited) experience, people are more likely to be discharged from the hospital to a skilled nursing facility than to be sent home. If that's the plan, in my experience, the hospital social worker will do the work for find her bed but you have a preference, you need to figure that out ahead of time. Once they decide she is really ready to discharge, they will want her out same day or next day.

At the same time, we have usually been able to get a sense of how much longer (a day or two vs a week or more). In our experience, we have been able to ask the nurse to have the doctor call us to discuss our mother's condition and prognosis. Only works if you have a job where you can answer the phone when the doc calls but it is better than trying to be at the hospital when the doctor does rounds.

In my experience, they never know exactly when a complicated patient will be discharged until it happens. So, ask the doctor specifically what needs to happen for your mother to be discharged (usually some specific test that needs to be above or below a certain level or a certain even that has to happen). Ask they are going to be recommending skilled nursing/rehab or if she can go home (or into a long term care facility)

I know that one hour when you thought you had an answer and it was taken away really upset you but I think it was probably a good thing that they caught it quickly and prevent a premature discharge. In my experience, hospitals are more likely to discharge people too quickly, having her sent home without an assessment and without a support system in place would be just asking for worse trouble.

If she needs more support than she can get at home to be safe but doesn't qualify for short-term (100 days, I think is the limit) skilled nursing then, yes, the hospital will assume that it is the family's problem to figure out what is next. It sounds like the hospital is trying to prepare you for the fact that she won't be capable of staying on her own home. The question is how much help will she need because that will determine what kind of options will work (although you should think about what happens next time she takes a turn for the worse and things deteriorate even more) I think maybe that is what the assessment will tell you??

My advice is to assume that she will need more care than she get at home. Find a list of long term care options in your area, check them against the state licensing bureau to eliminate the worst then arrange to go visit the ones that seem viable. You won't have to decide until you know more but at least you can get an idea of which options you might want when the time comes. If you don't have time for that but have $$, there are consultants that can help. To get the list, A Place For Mom has pretty good directory of the larger facilities although I don't know that their paid services are worth the money. When we need a smaller place (called board and care in California) the skilled nursing facilities referred us to a placement specialist (paid on commission) who showed up a handful of different places that were within our location and distance preferences. I used the state licensing board to call up a few more than sounded good. We've done it twice and it took a couple days of research and couple days to do visits to find the right option.

And, yes, this is very tough. I had the advantage of a partner to share the work and being local - I can appreciate how much harder it is for you but your efforts will make a big difference in your mother's wellbeing.
posted by metahawk at 11:41 PM on December 5, 2019 [4 favorites]

I am so sorry for your frustrations in dealing with all this, it sounds really stressful.

My family experienced something similar when a relative was in hospital and we came to the conclusion that the staff couldn't give us clear answers or time estimates because really, they just didn't know for sure. It depends on so many factors, that they don't know until assessments/diagnosis/placement requests/medical tests/social worker input etc, all fall into place. So although it is frustrating, it isn't the individual nurses or whatever in particular being difficult, it is just a fact of the system being that way.

In case you didn't think of it, I wanted to ask if there was any way you could speak to your employer and postpone leaving for the start of your job by a few weeks at least? This would give you some breathing room and possibly time for concrete plans to be made for your mom's future care.

Good luck to you and your mom!
posted by fourpotatoes at 2:28 AM on December 6, 2019 [7 favorites]

I'm so sorry for what you're going through. I know you're overwhelmed and frazzled, and it's lousy that you're dealing with everything on your own. Since your last question, have you been able to contact a lawyer?

1) You're feeling disrespected by hospital staff, and the whole mistaken-discharge fiasco didn't help; after the legal consult, you can say, I sought legal advice or my lawyer advised:

-- requesting daily status reports (printed/emailed), including a list of the doctors seen that day, or
-- asking about any 'sister' hospital to this one in the new area, in case she needs to be transferred to a hospital closer to me, or
-- stressing the necessity of a firmer framework, as I may have to move her a facility offering the right type of care closer to where I'll be.

Being able to mention you've been consulting a professional about your mom's care can help you feel less vulnerable and anxious in these conversations. Like invisible muscle backing you up and lending your words some weight. Please, don't misunderstand me (it's very late here, and I'm worried I'm not being as clear as I'd like to be) -- you are in no way threatening anyone, you are just trying to get the very best care for your mother for the best possible outcome and a lawyer is part of your support team to meet that goal. You'd like everyone in that hospital to be on that team with you.

2) The lawyer can help set up Enduring Power of Attorney, which, in Alberta, may need to happen before the evaluation.

"If you lose your capacity and don’t have an enduring power of attorney agreement in place, one of your friends or family members might have to go to court to become your trustee. This takes time and money. If you have this agreement in place, you don’t need a trustee."

I'm sorry to bang the drum on this, but you had mentioned the worst-case scenario of selling the house to cover her care down the road; you'd want to preserve the ability to do that. The links go to Alberta-specific info. Please get legal advice as soon as you can. I think it will make navigating this situation easier in the present and after you've moved.
posted by Iris Gambol at 2:52 AM on December 6, 2019 [4 favorites]

I'm in a different country, so I can't give you specific advice, but unfortunately I have a lot of experience with this.
As metahawk wrote, there are a lot of things that are unknowable in your situation. The staff at the hospital are probably not being evasive or dismissing your point of view. They just don't know (and are maybe embarrassed that they can't help you). Also, if you don't have power of attorney, you probably need to arrange a meeting in your mother's hospital ward with your mother at some level of consciousness. You should be able to do that. Ask for a meeting with the head nurse, the doctor and the head social worker. I couldn't get my grandmother out of the hospital before I got that meeting. You can take three separate meetings, if that's the only way it works with schedules, but one is better. In a few minutes, I'm going over to get my mother to give me power of attorney to avoid such a situation in the future. Make a list of what you want to ask about, and also of how you would prefer things to go.

My parents divorced when I was very small, and I moved in with my grandparents, so I have three sets of close relatives: my half-siblings on my dad's side, my half-siblings on my mom's side, and my cousin, who also moved in with our grandparents when we were small. This is relevant because when I was dealing with my old grandparents and dad and stepmom, we were mutually supporting teams, and I learnt from them. Now when I have been in a similar situation with my mom, who is finally in a nursing home, the siblings on that side are scared and confused and also very busy. So I have to direct them, using the skills I've learnt earlier. Even though I have siblings, it is all on me. This paragraph is a long apology for saying something very directly that I have had to say to my sister:
When you talk to hospital staff or people in the care sector, you need to be more respectful and friendly than you feel. Remember that they work very hard to help your mother and want to do their best. It's tough on them when mistakes are made, and they fear lawsuits and press attention like the pest. So if you appear angry, frustrated or just scared, they may be wary of you. It's stupid, but it's reality. Be calm, acknowledge their hard work and expertise, and ask them questions in a non-confrontational manner. After I said this to my sister, she went totally over the top in the opposite direction. That wasn't good either, so its still all on me, though at least my sister has stopped creating problems. But I hope you understand the concept.
People in the care sector know and understand that family can be worried and frustrated and they have courses on how to deal with it. But it is not their main purpose or focus, and they are also real humans with feelings. You can get a lot further if you think of it that way.

I understand you so well. When I learnt that my mother was getting really ill, and was repeatedly hospitalized, I came down with a hard depression because I knew how hard the next many months would be, and still are, and I just couldn't deal with it. But after I forced myself to take a lot of deep breaths and enter the fray using my previous experience instead of panicking, I began feeling better.
posted by mumimor at 4:13 AM on December 6, 2019 [9 favorites]

I generally find that there are two problems with getting information out of medical professionals.

1. They assume you are as familiar with the systems and processes as they are and so they omit key details that are second nature to them. This is an easy mistake to make, one that I have had to work hard to train myself out of, and one that I always emphasize with my trainees. They will say things like "we will do the assessment" without mentioning that the person that does the assessments is only in on Tuesdays and Fridays, because of course they only come in on Tuesdays and Fridays.

2. They aren't familiar with the systems and processes themselves and so they give minimal answers or sometimes incorrect answers rather than say "I don't know". This can be for a million reasons, but it is usually not because they are a jerk or are bad at their jobs.

To combat these problems, I try and ask a lot of basic questions. When will that be? Who does that? What will that tell us? Is there anything we can do to expedite that? Is that absolutely necessary? What are the consequences of not doing it? Is there anyone else that we need to coordinate that with? It can be annoying to do, but it really helps, and often it either sort of jolts folks out of their complacency and they start to be naturally more informative, or they find someone more knowledgeable to help.
posted by Rock Steady at 5:13 AM on December 6, 2019 [12 favorites]

Do not underestimate the role of insurance in some of these discharge issues. Medicare (and private insurance) have all kinds of stupid, illogical, unhelpful rules about discharge and placement. The "people" that the regular social worker may be referring to are the insurance (or billing) folks. They may try to push a casual social worker to release the bed, even if your mother is not ready. The regular social worker probably pushes back at this because she is trying to get a better situation for your mother. Maybe ask the social worker about the role of insurance is some of this.

I've been through this sort of thing with my father and it is, indeed, deeply upsetting. Sorry that you are dealing with it.
posted by Pineapplicious at 6:00 AM on December 6, 2019 [4 favorites]

I'm so sorry you're dealing with all this.

In my extensive hospital experience, I found two things that helped me cut through all the BS:
1) I keep copious notes, in a notebook, and write things down as the doctor/nurse/social worker/whoever is talking. As I write, I say aloud what I'm writing to make sure I get the details right. Then I refer back to my notes down the road - "Oh, on Tuesday Dr. Y said X - now you're saying this other thing? Have you confirmed this with Dr. Y?" Seeing me taking notes seemed to add some weight to my interactions. They seemed to take me more seriously. I still carry this same notebook to all my appointments and it's so helpful to be able to reference exactly who said what when. If staff don't know the answer (which happens! It's ok!) at least pointing out that someone DID give you an answer tends to make them dig a bit harder or try to connect with the other person.

2) I structure my language in a way to put us on the same page. As Rock Steady says above, staff tend to internalize their own processes and not realize that you don't know them. I say a lot of things like, "Help me understand what the evalution will be looking for/what happens next/who schedules this." By reframing it this way, it conveys that we are both trying to solve the same problem, but need the same information.

I hope this helps - hang in there.
posted by writermcwriterson at 8:04 AM on December 6, 2019 [2 favorites]

Response by poster: Iris Gambol, according to the hospital it’s too late to create a power of attorney because of her situation. So, the said I need to wait until she fails the capacity assessment then apply for guardianship/trusteeship through the courts. I figure seeing a lawyer at this point is a waste of time, energy, and money. What can they actually do in this situation? It doesn’t seem like much, besides I’m moving to a different city and have no time to see a lawyer when I work from 9-5. It’s not like I’m going to sue anyone, so I’m missing the point.
posted by VirginiaPlain at 9:56 AM on December 6, 2019

So, I can't speak to Alberta but in Ontario, what they might be trying to navigate is that if your mother is exhibiting mental health issues (which you've indicated she has) they want to discharge her to a long-term care facility, but that means she waits for a bed to become available. So she stays in hospital until there's a bed. As opposed to if she can be released to go home, with or without supports and what kind, and waits for a bed there.

There's always pressure in the hospital to free up beds, so that might explain the slight run-around that you're getting. But from experience with my father going through a decision tree that eventually had him going from hospital to rehab vs. hospital to long-term care, things will change depending on what the latest test or evaluation or doctor or social worker was that evaluated your mother, because particularly with cognitive things, things change. Just as an example, my dad went downhill mentally really badly and so they were going to send him to long-term care...but then he was diagnosed with a urinary tract infection, and when that was treated, his cognition improved radically, so that changed fast.

It is really confusing, but try to ride it out until they are asking for you to actually take action. Up until then, it's information. And yes, I totally get why you want to be able to plan everything, but probably, you will end up having to adjust anyway. Collect phone numbers, agencies, prices for whatever supports you think you might need, where you get a bed and how you get it delivered, whatever, so that you have them for the day you need them.

I promise you that these are solvable problems because you are not the only adult child of a senior who has had to arrange everything from not-there before.

Additionally, do everything you can and need to do for you and your move. Because that is something you can arrange and get ahead on.

On the feelings:

I feel like they are always trying to dump everything on me for my mother. - hospitals in Canada do dump things on families (or at least, make decisions without regard for the families in some cases), but it is not personal, it is in a sense how the (sucky) system works.

With respect though, I think your feelings on this may be getting tied up in the fact that you are about to make a big move for yourself (YAY) and they don't appreciate, and will not appreciate, that the timing is really bad for you. And there may be some history of you taking on responsibilities for your mentally ill mum as a child here too.
posted by warriorqueen at 10:32 AM on December 6, 2019 [1 favorite]

Think of it like a deposition, only nicer in tone.

"We need to do X."

* What will X show?
* Will I get that information, and, if so, when?
* What kind of follow-up might be required after X?
* Who will do X?
* When will X be done?
* Is there any special preparation required for X?
* Does X's being done depend on anything else happening first?
* Does anything else depend on X's being done first?
* Is there anything else I should know about X?
* Who should I contact if I have further questions about X?

Be nice, but persistent. I'm sorry you're going through this.
posted by praemunire at 10:44 AM on December 6, 2019 [1 favorite]

My mother was in hospital for around 10 weeks this year with a serious illness, so first of all, I feel you. I also lost my job during this period because I was caring for her at the hospital, and ended up moving thousands of miles to be closer. So I understand what's stressing you out, at least to some extent, and I agree with a lot of what's been said so far. I'm really sorry you're going through this.

Because of the complicated privacy rules and policies surrounding healthcare (which are a good thing), doctors and nurses often don't have a complete picture without asking around and duplicating legwork. The single most important thing you can do to advocate for your mother is to be the source of truth. You, and to some extent your mom, are likely to be the people with the most complete picture. You need to trust what each member of the medical staff is telling you - but also verify.

Added to which, there are no certainties. All you can be sure of is what's been done so far, what tests and procedures are lined up, why, and what the decision paths are. (If test X comes out with Y, then Z will happen.) It's important to ask those questions. In your situation, where you might not be around, asking questions about what you can do remotely are important. But real planning is next to impossible. (After years of this, I've become fairly good at estimating when we'll be discharged, but it's almost never something we're told straight up by the hospital.)

Everyone at the hospital is very likely doing their best. They're not out to screw you around. It sounds like there was a genuine issue with the social worker misunderstanding or overstepping and then being rapidly corrected, but unfortunately mistakes will happen. Think of your mother's health status as a project with many owners internal to the hospital who might not speak to each other: they all need to have a consensus before discharge is possible. The nurses will be the source of truth for discharge; they can check what's in the file and what the doctors and specialists are thinking. The one thing I've seen go wrong with other family members in North America is - and I'm not at all saying that you're doing this, just that it's something to avoid - treating the situation like a customer / service provider relationship. Instead, you're all part of the same team, all wanting the best for your mom in an uncertain situation where answers aren't clear for anyone.
posted by bwerdmuller at 5:32 PM on December 6, 2019 [1 favorite]

i wonder if you could contact your/her patient advocate and explain to them the overwhelmingness of it all - maybe they can become a good point of contact or at least help you get more definite answers (and if not actual answers, then answers as to why you aren't getting what you need?)
posted by megan_magnolia at 7:08 AM on December 7, 2019 [1 favorite]

I figure seeing a lawyer at this point is a waste of time, energy, and money. What can they actually do in this situation?

I had previously encouraged you to contact an attorney, and I continue to do so. I'm not familiar with how the system in Canada works, but in America, there can be a government process that could take over your mother's care and her assets if you neglect opportunities to manage the situation before that happens. Only a lawyer with a practice that includes a focus on elder law in your jurisdiction can explain what they can actually do in this situation, and how you can help make things better for yourself and your mother.

It’s not like I’m going to sue anyone, so I’m missing the point.

Yes, you may be missing the point of a proactive and defensive practice of law that is designed to prevent litigation. Also, are you sure that your mother has not prepared estate planning documents before this? E.g. if there is a chance that she has a safe deposit box, you may want to ask an attorney in your jurisdiction about how you may be able to gain access to it.

Is there a better way to ask for answers? Even if there are none?

Please and thank you can go a long way, based on my increasingly extensive experience navigating hospitals and medical facilities. I suggest expressing your appreciation for the attempts to help, and calling attention to when someone is kind, because you are building a care team that currently has you as the leader.
posted by katra at 11:23 AM on December 8, 2019 [2 favorites]