Hospital frustration—tips to get info?

[Spryte]

My mother has been in the hospital for a few days. She is a resident of a nursing home now, so I’m no longer the primary caregiver, but I’m still MPOA, and I am so frustrated!

I can’t seem to get much info about her condition, other than what I can access on her patient portal. The nurses are sporadic about returning calls, don’t seem completely clear on what’s going on when we do talk, and I’ve yet to hear directly from a doc. The doc notes online indicate sepsis, and another issue, but the nurses seem skeptical, so I am really at a loss as to what’s going on.

When I’ve gone in person, I have been unable to locate a nurse, and have spent hours in her room with no one checking in. I’m not listed as a visitor, and can’t even find someone to get my name on her list, but security has just been kind enough to let me go up (so far).

I’d like to get some solid info about her condition and plan, to relay to the nursing home. I think she’s at risk of losing her bed there, if she stays in hospital longer than three days, so I’m starting to feel pretty anxious.

Any tips on getting communication going? I need a way to jumpstart things.

This is a new-to-us hospital, we’ve always used a different facility, that’s been extremely caring and communicative. This one is also swamped, and understaffed. I can’t stand this place, but it’s where she is and I have to work with what we’ve got. 
 

 

Edited November 8, 2021 by Spryte

[mlktwins]

This is more than I knew was going on 😱!

Can you find out what time rounds are for the doctors and be there and ready before he/she should be there?  

That is horrible that no one is checking on her for hours at a time!!!

Can the nursing home call since they are the primary caregiver?

I'm so sorry...

[prairiewindmomma]

Things I have done, when I have needed to be a PITA to get stuff done:

1. Call the patient advocate line, and loop them in, especially as your mother is unable to adequately advocate for herself.

2. Ask the nursing home director to pull strings to get the charge nurse to call you.

3. Try to find the charge nurse for the floor and politely raise hell. Bringing cookies or chocolates when you do seems to help.

4. When they round, have the social worker join them and call you via FaceTime to coordinate information and planning. Mention to the social worker that she is going to lose her nursing home bed without more information to give to the director. If her nursing home has a skilled nursing floor, perhaps she could be discharged to there on abx for monitoring? 

ETA:

5. Camp out there, noting how long it has been since someone checked in on the patient, especially if there are IVs running, patient is incontinent, patient has dementia and is a fall risk, and so on.  I realize things are FUBAR on most hospital floors right now, but patients have more ability to raise hell with administration than nurses do, and I'm willing to....advocate very politely and very strongly, especially if patient/nursing ratios are unsafe.

Edited November 8, 2021 by prairiewindmomma

[Frances]

Do they have nurses who are care coordinators? When my mom was hospitalized several times last fall, we were all struggling to get good info from new providers during hospital overwhelm. Previously, this facility had always been excellent. Also, my mom was dealing with new issues on top of several pre-existing issues. I finally voiced my frustration one day on the phone to the surgeon’s nurse and asked if there was any resource for our family. She immediately recommended a care coordinator and said she would have the surgeon do a referral. It was the best thing ever! She accompanied my mom to all appointments, conferenced those of us who couldn’t be there in, took all of our phone calls, followed up with any questions to which she didn’t have immediate answers, etc. Basically she was everything we needed and more during a very stressful time. And she is still assigned to my mom, so it’s an ongoing relationship. And it’s all free!

[Mrs Tiggywinkle]

It’s likely because they’re swamped and understaffed.  They also are probably in communication with the nursing home if she’s heading toward discharge. 

Call the patient advocate hotline. Legally thhe number should be posted in her room.

Ask to speak to her case manager. That should be a nurse or social worker at the hospital.  
Also, contact the nursing home.  It’s definitely possible they know more. 

[PeterPan]

10 minutes ago, mlktwins said:

Can you find out what time rounds are for the doctors and be there and ready before he/she should be there?  

When my dad was in the hospital, that was my best strategy for getting info. Also talk with the social worker at the hospital. The nursing home has your paperwork but the hospital may not.

[Fritz]

17 minutes ago, Spryte said:

My mother has been in the hospital for a few days. She is a resident of a nursing home now, so I’m no longer the primary caregiver, but I’m still MPOA, and I am so frustrated!

I can’t seem to get much info about her condition, other than what I can access on her patient portal. The nurses are sporadic about returning calls, don’t seem completely clear on what’s going on when we do talk, and I’ve yet to hear directly from a doc. The doc notes online indicate sepsis, and another issue, but the nurses seem skeptical, so I am really at a loss as to what’s going on.

When I’ve gone in person, I have been unable to locate a nurse, and have spent hours in her room with no one checking in. I’m not listed as a visitor, and can’t even find someone to get my name on her list, but security has just been kind enough to let me go up (so far).

I’d like to get some solid info about her condition and plan, to relay to the nursing home. I think she’s at risk of losing her bed there, if she stays in hospital longer than three days, so I’m starting to feel pretty anxious.

Any tips on getting communication going? I need a way to jumpstart things.

This is a new-to-us hospital, we’ve always used a different facility, that’s been extremely caring and communicative. This one is also swamped, and understaffed. I can’t stand this place, but it’s where she is and I have to work with what we’ve got. 
 

 

Wow, hours in the room with her and no one checks on her?! I would suggest first to push the call bell and tell them you are family and you would like to speak to the hospitalist. If that doesn't get you anywhere, go to the desk and ask to speak to the hospitalist. If you still get no answers call the administration. You might try going to the front desk at the entrance and ask to speak to the CNO and explain the lack of care your mother is getting and your concerns not being addressed. So sorry this is happening.

[wathe]

You've gotten good advice above.

Definitely speak with the patient representative/navigator - the role has many different names.  

Definitely become a physical presence.  Spend as much time present in-person as possible. 

Definitely be an assertive advocate!  That said, please do it politely.  Find (and respect)  the line that separates assertive from disruptive.  It helps if you are 1) there a lot and 2) viewed as helpful while you are there (see if there are any non-medical care tasks you can take on - you shouldn't have to do this, but if you are viewed as a  helpful family member by staff, they will be more likely go out of their way to get you what you want, and if you are viewed as an obstruction/disruptive/PITA they definitely won't).  Learn the staff's names if you can, and use them - this is a small thing that really makes a difference.  

I will add: call health records and request a paper copy of her complete chart.  You will likely have to pay for this.  There are lots of bits of chart (progress notes, nursing notes, etc) that do not get published to patient portals.  

 

 

 

 

 

Edited November 8, 2021 by wathe

[Spryte]

I have left more messages for the nurse, patient advocacy, and her case manager. Will take a box of goodies when I go over in a few hours and try to find a nurse again.

I’ve been spending about three hours a day with her. More than that on the first day. Unfortunately, that’s all the time I can manage. It’s a far cry from the 10-12 hours I’ve spent with her in other hospital visits, but I just can’t do that this time. Kids need care.

They have put a huge camera in her room, since she’s a fall risk and has been pulling out her IVs. It’s continually monitored, so I’m not too worried about the lengthy stints without someone physically poking their head in, though I’m not thrilled.

Off to call the SW at the nursing home to see if she can get in my corner, too.

[wathe]

2 minutes ago, Spryte said:

I have left more messages for the nurse, patient advocacy, and her case manager. Will take a box of goodies when I go over in a few hours and try to find a nurse again.

I’ve been spending about three hours a day with her. More than that on the first day. Unfortunately, that’s all the time I can manage. It’s a far cry from the 10-12 hours I’ve spent with her in other hospital visits, but I just can’t do that this time. Kids need care.

They have put a huge camera in her room, since she’s a fall risk and has been pulling out her IVs. It’s continually monitored, so I’m not too worried about the lengthy stints without someone physically poking their head in, though I’m not thrilled.

Off to call the SW at the nursing home to see if she can get in my corner, too.

Optimize the timing of your visits if you can.  Try to be there when the team rounds and when care is happening.  First thing in the morning is a pretty high yield time.

[Spryte]

1 minute ago, wathe said:

Optimize the timing of your visits if you can.  Try to be there when the team rounds and when care is happening.  First thing in the morning is a pretty high yield time.

Thanks. I so wish I could be there then. Unfortunately, I can only pull that off on a weekend these days. I’m only able to go during late afternoons right now, though I could shift that a bit and be there during the shift change at 7:30 pm, if that might help.

[wathe]

3 minutes ago, Spryte said:

Thanks. I so wish I could be there then. Unfortunately, I can only pull that off on a weekend these days. I’m only able to go during late afternoons right now, though I could shift that a bit and be there during the shift change at 7:30 pm, if that might help.

Probably not.  Shift change is super busy for nurses and other care staff, and is the time when they will have the very least energy available to help you.

Be there while the day-shift is there if you can.  They will have rounded with the MD and have first-hand knowledge of what is going on.  That's also when managers are around, if you have to escalate.  Night staff will be a degree removed from info you want - information will be second hand; they will know what they were told in report and what's been documented, and likely won't have had in-person communication with the MD.

[Spryte]

Ok, so I’ve got the nursing home SW on this, too, and she’s working to have a nurse there call me, as the hospital has been in touch with the nursing home. 

Hopefully I will get some answers. Just to talk to someone would help. I have only managed to speak with a night shift nurse, who didn’t seem sure that my mom’s diagnosis fit.

No one has returned my calls from this morning, and I just read that she had a procedure at noon, putting in a midline. 

DH called and verified — I am on file as her MPOA. 

Blech. 

I will go politely pester them for info as soon as I can.

 

[PeterPan]

1 hour ago, Spryte said:

I can only pull that off on a weekend these days. I’m only able to go during late afternoons right now, though I could shift that a bit and be there during the shift change at 7:30 pm, if that might help.

With my father, there was a routine where the nurses bathed and got everyone ready, then the doctors and social workers did rounds. That's why it's morning and that's why evening and weekends won't probably get you what you're wanting. That weekend person isn't necessarily the person doing the main care. 

Can you hire a sitter to get you in just *one* morning? It sounds like this is a very serious situation. 😞 

Edited November 8, 2021 by PeterPan

[Spryte]

20 minutes ago, PeterPan said:

With my father, there was a routine where the nurses bathed and got everyone ready, then the doctors and social workers did rounds. That's why it's morning and that's why evening and weekends won't probably get you what you're wanting. That weekend person isn't necessarily the person doing the main care. 

Can you hire a sitter to get you in just *one* morning? It sounds like this is a very serious situation. 😞 

Yes, I can try to work that out.

[Harriet Vane]

The others have given excellent advice and you're doing a ton to get to the bottom of this. You go, girl. 

One further note--

Hospitals and doctors in follow-up care unfortunately tend to under-respond to sepsis in this country. I had severe sepsis. Several months later, I had the opportunity to connect with a friend who is high up in the chain of command in her big-city hospital system. (She's a doctor with a practice of her own and also a big whig with the hospital. There's even a 3-D of her face on a big wall of Important People at the main hospital.) She's super concerned about the lack of aggressive response that's needed in sepsis and has made efforts to bring attention to it and better standard of care in her own hospital system. This friend was really, really helpful to me in understanding what happened to me both in the short-term infection that hospitalized me and also the long-term recovery, which was extensive. 

My point is that if your mom has sepsis at any level, she likely needs a more extensive "wrap" of services over the different stages of recovery. In the immediate moment, that means whatever meds are appropriate to get past the acute stage. After that, she will likely need lots of physical therapy to combat the deconditioning that is part of sepsis--this may be something you will need to advocate for. She will be exhausted for a long time. 

Warm hugs--it's a hostile system and frustrating to try to navigate. Bless you for your love and attention to your mom.

[Spryte]

Updating to say that I spoke with both the hospitalist and one of the specialists. Very helpful.

Sepsis improving, and a procedure to address the other issue tomorrow.

Thanks, all!

[Melissa Louise]

Glad you were able to get info. 

[Catwoman]

Thanks for the update -- keep us posted on how she's doing!