Are all hospitals like this?
May 24, 2011 11:56 PM Subscribe
How can I make the most of a loved one's unwanted hospital stay? I want him to get the best care possible, I want to avoid insurance conflicts, I want to support his recovery efforts, and I want to avoid going insane.
The short version:
What can I do to support my husband as he recovers?
How can I most effectively advocate for my husband and make sure he gets the best care the hospital can provide?
How can I take care of myself so that I don't go insane?
What should I do at this point to make sure that everything is covered by insurance and that this experience doesn't bankrupt us?
The long version:
My husband had appendicitis. We arrived in the ER Friday night, he had surgery Saturday morning, and was checked in to a room in the "Trauma Recovery and Acute Care Unit." Complications are extending his stay. He's in a huge amount of pain, unable to get a good night's sleep because nurses have to take his vitals every few hours, and he's often doped up and confused. What can I do to support my husband as he recovers?
The hospital staff check on him regularly and clearly mean well, but they're busy and they keep missing things - not noticing that he hadn't eaten for 24 hours, forgetting to give him pain meds for eight hours, only realizing that his oxygen levels were abnormally low after I expressed concern about his breathing. I'm trying to stay educated about his condition by asking lots of questions of the nurses and - on the rare occasions when I can pin them down - the doctors. I'm also spending a lot of time on WebMD and Wikipedia. How can I most effectively advocate for my husband and make sure he gets the best care possible?
This is the first medical crisis I've had to deal with single-handedly, and it's freaking me out. I really miss having my healthy, happy, normal husband around. I'm spending every minute I can at the hospital. I'm eating junk because I don't have time to cook, doing twice as many chores because he's not here to back me up, and feeling stressed at the hospital, distracted at work and lonely at home. Plus, my best friend is hurting and I can't fix it and that is stressing me out. How can I take care of myself so that I don't go insane?
My husband has pretty good insurance, I think, but we haven't really been in touch with the insurance company about this situation. I verified that the emergency room we went to was accepted by his plan before we headed there, but I don't know if that coverage automatically carries over once you're out of the ER and into the recovery area. What should I do at this point to make sure that everything is covered by insurance and that this experience doesn't bankrupt us?
The short version:
What can I do to support my husband as he recovers?
How can I most effectively advocate for my husband and make sure he gets the best care the hospital can provide?
How can I take care of myself so that I don't go insane?
What should I do at this point to make sure that everything is covered by insurance and that this experience doesn't bankrupt us?
The long version:
My husband had appendicitis. We arrived in the ER Friday night, he had surgery Saturday morning, and was checked in to a room in the "Trauma Recovery and Acute Care Unit." Complications are extending his stay. He's in a huge amount of pain, unable to get a good night's sleep because nurses have to take his vitals every few hours, and he's often doped up and confused. What can I do to support my husband as he recovers?
The hospital staff check on him regularly and clearly mean well, but they're busy and they keep missing things - not noticing that he hadn't eaten for 24 hours, forgetting to give him pain meds for eight hours, only realizing that his oxygen levels were abnormally low after I expressed concern about his breathing. I'm trying to stay educated about his condition by asking lots of questions of the nurses and - on the rare occasions when I can pin them down - the doctors. I'm also spending a lot of time on WebMD and Wikipedia. How can I most effectively advocate for my husband and make sure he gets the best care possible?
This is the first medical crisis I've had to deal with single-handedly, and it's freaking me out. I really miss having my healthy, happy, normal husband around. I'm spending every minute I can at the hospital. I'm eating junk because I don't have time to cook, doing twice as many chores because he's not here to back me up, and feeling stressed at the hospital, distracted at work and lonely at home. Plus, my best friend is hurting and I can't fix it and that is stressing me out. How can I take care of myself so that I don't go insane?
My husband has pretty good insurance, I think, but we haven't really been in touch with the insurance company about this situation. I verified that the emergency room we went to was accepted by his plan before we headed there, but I don't know if that coverage automatically carries over once you're out of the ER and into the recovery area. What should I do at this point to make sure that everything is covered by insurance and that this experience doesn't bankrupt us?
1. About the hospital staff: they need to get their act together. Not feeding a patient for 24 hours is ridiculous. Have you told someone about the missed meals and medications? Don't just talk to the desk staff... in my hospital, the desk staff was just an orderly. They can't do crap to help. Talk to someone higher up -- like admin or hisdoctor, when he comes to check on your husband. Don't hesitate -- bring up the issues that are concerning you when the medical staff is in your room. Trying to track someone down when their are doing their rounds can be really hard. Also, try to keep your emotions in check. Hospital staff are jaded towards drama and if you seem hysterical or panicked, they are less likely to take you seriously.
As for your husband's confusion -- you can't do much, since the meds that make him confused are the meds that keep him out of pain. Just try to let him know that you are there. You could try talking to him or holding his hand. I think he'll feel better knowing, on some level, that you are there supporting him.
2. I know dealing with this can be really overwhelming, so it's important for you to take things one. at. a. time. First of all, know that the situation is somewhat positive because your husband has a serious medical condition taken care of. That's 50% of the battle. Also know that you don't have to do EVERYTHING. Delegate! Do you have good, reliable family members, friends or neighbors who can take care of chores, just during your hospital visit? Would you be willing to hire a cleaning service, just for the time you're spending in the hospital?
If you aren't eating well, can you ask a nice family member or friend to drop off a home-cooked meal or ready-made meal that is healthier/more substantial than vending machine/hospital cafeteria food? Would you be okay with going home for an hour or two to whip up a bunch of healthy and filling sandwiches, some veggies sticks/fruit, bottles of juice/water that you can wrap up and bring back to the hospital in a lunchbox (with icepack)? (I would also bring something to pass the time with, while you're at the hospital. A book/magazine/iPad/mp3 player. You can't be spending 100% attending to everyone else. You have to have some relax time.)
If your friend knows your husband is recuperating in a hospital after a serious procedure, your friend WILL UNDERSTAND why you can't focus on them right this second.
ALSO: You need to know that you CAN'T DO IT ALL. And you don't have to. You are not responsible for everything. I know that because the hospital staff is negligent and you're struggling to take care of your husband and your house and yourself and your friend everything seems like it's exploding. So, take a deep breath, make some lists, talk to some people, delegate, delegate, delegate, and get some sleep. A good nap (and a good meal) will clear your head and make everything seem a lot less doom and gloom.
OK?
I don't know anything about insurance, so I can't help you there. :(
posted by joyeuxamelie at 12:36 AM on May 25, 2011
As for your husband's confusion -- you can't do much, since the meds that make him confused are the meds that keep him out of pain. Just try to let him know that you are there. You could try talking to him or holding his hand. I think he'll feel better knowing, on some level, that you are there supporting him.
2. I know dealing with this can be really overwhelming, so it's important for you to take things one. at. a. time. First of all, know that the situation is somewhat positive because your husband has a serious medical condition taken care of. That's 50% of the battle. Also know that you don't have to do EVERYTHING. Delegate! Do you have good, reliable family members, friends or neighbors who can take care of chores, just during your hospital visit? Would you be willing to hire a cleaning service, just for the time you're spending in the hospital?
If you aren't eating well, can you ask a nice family member or friend to drop off a home-cooked meal or ready-made meal that is healthier/more substantial than vending machine/hospital cafeteria food? Would you be okay with going home for an hour or two to whip up a bunch of healthy and filling sandwiches, some veggies sticks/fruit, bottles of juice/water that you can wrap up and bring back to the hospital in a lunchbox (with icepack)? (I would also bring something to pass the time with, while you're at the hospital. A book/magazine/iPad/mp3 player. You can't be spending 100% attending to everyone else. You have to have some relax time.)
If your friend knows your husband is recuperating in a hospital after a serious procedure, your friend WILL UNDERSTAND why you can't focus on them right this second.
ALSO: You need to know that you CAN'T DO IT ALL. And you don't have to. You are not responsible for everything. I know that because the hospital staff is negligent and you're struggling to take care of your husband and your house and yourself and your friend everything seems like it's exploding. So, take a deep breath, make some lists, talk to some people, delegate, delegate, delegate, and get some sleep. A good nap (and a good meal) will clear your head and make everything seem a lot less doom and gloom.
OK?
I don't know anything about insurance, so I can't help you there. :(
posted by joyeuxamelie at 12:36 AM on May 25, 2011
I don't know the feeding protocols after abdominal surgery, but is it possible that the physicians had ordered nil orally for 24 hours?
How is he doing emotionally? Is he bored? I've found that magazines are a much appreciated gift in the hospital. The people I've visited in the hospital have been too ill to read anything heavy, but have enjoyed looking at the pictures in magazines and chatting about what's going on in the world outside.
posted by ladypants at 12:38 AM on May 25, 2011
How is he doing emotionally? Is he bored? I've found that magazines are a much appreciated gift in the hospital. The people I've visited in the hospital have been too ill to read anything heavy, but have enjoyed looking at the pictures in magazines and chatting about what's going on in the world outside.
posted by ladypants at 12:38 AM on May 25, 2011
I would start by talking to the unit's charge nurse or director, and airing your concerns about his care. This could be an issue with inexperienced staff, or it could be that they're stretched too thin. It may be a clerical errors or miscommunications. Whatever the case, it needs to be on the record, and it needs to be fixed. If you aren't satisfied, move up the chain of command until you are. Write out your concerns, so you don't miss anything.
There's no easy solution for the lack-of-sleep issue, unfortunately, but once he's well enough to move out of the acute care phase, there will at least be longer stretches of time where he's not being assessed, medicated, or getting vitals. As he's able to get more sleep, and use less pain medication, the confusion should get better.
I would call the insurance company and let them know he was admitted. I would think the hospital's billing office would have already started that process, but I admit I know very little about the financial aspect of the hospital experience. You might want to read the benefits manual for his insurance plan, or call his HR department and speak to a benefits specialist (I'm assuming the coverage is through his job), just to ease your mind. There may also be someone at the insurance company who could go over specifics about the policy. I would think that an emergency room visit that results in an admission would be covered, but of course, every plan is different.
Do you or he have a support network nearby? Family, neighbors, coworkers, church members who can help you with the housework, errands, or making meals? Please don't feel like you have to take on everything by yourself. Having a family member in the hospital is one of the most stressful life events there is, so don't try and shoulder the burden alone. Case managers and social workers through the hospital can also be helpful finding resources, so if you're feeling overwhelmed, don't be afraid to ask one of the nurses if you can talk to a social worker.
I wish you both the best with his recovery.
posted by and miles to go before I sleep at 12:45 AM on May 25, 2011
There's no easy solution for the lack-of-sleep issue, unfortunately, but once he's well enough to move out of the acute care phase, there will at least be longer stretches of time where he's not being assessed, medicated, or getting vitals. As he's able to get more sleep, and use less pain medication, the confusion should get better.
I would call the insurance company and let them know he was admitted. I would think the hospital's billing office would have already started that process, but I admit I know very little about the financial aspect of the hospital experience. You might want to read the benefits manual for his insurance plan, or call his HR department and speak to a benefits specialist (I'm assuming the coverage is through his job), just to ease your mind. There may also be someone at the insurance company who could go over specifics about the policy. I would think that an emergency room visit that results in an admission would be covered, but of course, every plan is different.
Do you or he have a support network nearby? Family, neighbors, coworkers, church members who can help you with the housework, errands, or making meals? Please don't feel like you have to take on everything by yourself. Having a family member in the hospital is one of the most stressful life events there is, so don't try and shoulder the burden alone. Case managers and social workers through the hospital can also be helpful finding resources, so if you're feeling overwhelmed, don't be afraid to ask one of the nurses if you can talk to a social worker.
I wish you both the best with his recovery.
posted by and miles to go before I sleep at 12:45 AM on May 25, 2011
2 & 3 - prioritise - not all chores are essential at all times - take care of any animals you have, perhaps water the plants and make sure you eat properly and any and all other chores can wait. If you can recruit friends/family to help with these three tasks so much the better.
You might also want to mention to your boss what's going on to make sure they know why you are a bit distracted at work just now to avoid that becoming an issue further down the line.
posted by koahiatamadl at 12:54 AM on May 25, 2011
You might also want to mention to your boss what's going on to make sure they know why you are a bit distracted at work just now to avoid that becoming an issue further down the line.
posted by koahiatamadl at 12:54 AM on May 25, 2011
Response by poster: ladypants - He was told to eat heavily for 24 hours after surgery in order to lessen risk of a condition he has since developed.
Part of the problem is that he's being asked to make decisions and he can't handle it. Instead of being brought a meal, he was brought a menu and a phone, and told to read the menu, choose a meal and then dial the kitchen to order the food. He was totally out of it and didn't remember receiving these instructions, nor could he figure out what to do. He's being asked for his opinion on pain medication - does he prefer morphine, tylenol or some opioid pill. Why the hell would he know the difference between these pills and which he prefers?
koahiatamadl - My boss and colleagues have been completely awesome, giving me whatever time I need, flexibility to decide how much to work - or whether to work at all. I'm taking advantage of the flexibility. However I really love doing my job and don't want to abandon the fun part of my work.
posted by croutonsupafreak at 1:15 AM on May 25, 2011
Part of the problem is that he's being asked to make decisions and he can't handle it. Instead of being brought a meal, he was brought a menu and a phone, and told to read the menu, choose a meal and then dial the kitchen to order the food. He was totally out of it and didn't remember receiving these instructions, nor could he figure out what to do. He's being asked for his opinion on pain medication - does he prefer morphine, tylenol or some opioid pill. Why the hell would he know the difference between these pills and which he prefers?
koahiatamadl - My boss and colleagues have been completely awesome, giving me whatever time I need, flexibility to decide how much to work - or whether to work at all. I'm taking advantage of the flexibility. However I really love doing my job and don't want to abandon the fun part of my work.
posted by croutonsupafreak at 1:15 AM on May 25, 2011
if someone's spaced out they really need someone who's awake and aware to help with that. It sucks to be alone in hospital.
Can you take a break from work and sit with him, or can someone visit with him? This is when you call in friends/family. (over meal times, etc)
get better soon, mr croutonsupafreak!
posted by titanium_geek at 1:30 AM on May 25, 2011 [2 favorites]
Can you take a break from work and sit with him, or can someone visit with him? This is when you call in friends/family. (over meal times, etc)
get better soon, mr croutonsupafreak!
posted by titanium_geek at 1:30 AM on May 25, 2011 [2 favorites]
OP - at the risk of stating the obvious - if your location information is correct you should be asleep....right now, go to bed. you can't support your husband, look after yourself or do your job if you don't sleep.
posted by koahiatamadl at 1:36 AM on May 25, 2011
posted by koahiatamadl at 1:36 AM on May 25, 2011
Part of the problem is that he's being asked to make decisions and he can't handle it. Instead of being brought a meal, he was brought a menu and a phone, and told to read the menu, choose a meal and then dial the kitchen to order the food.
This apparently is common practice in many hospitals....during my late Dad's lengthy hospitalizations in the past few months (at two different hospitals) he, too, was supposed to phone in his meal choices. If he didn't call by a certain time, or missed a meal, someone came to his room with a menu and waited to write down his choices. Unfortunately, much of that time he was mentally confused and/or drugged and/or impatient and unable to decide/place his order. Thus began long months of different family members sitting by his bedside for 12 hours or more per day to not only help manage his meals but also to alert the very busy nurses when he needed bathroom assistance (he couldn't always find the "call" button) or other minor emergencies . We were "lucky" in that we had the available personnel (brother is currently laid off from work, I work from home and have a flexible schedule, Mom is retired), but for most folks it's nigh impossible to have a personal advocate keeping vigil. Maybe you can talk to the hospital ombudsman, or a nursing supervisor and leave a list at the nurses' station on your husband's floor with his food preferences (explaining that he is sometimes unable to phone in his orders)? (And best wishes for a full and speedy recover to your hub!)
posted by Oriole Adams at 3:23 AM on May 25, 2011
This apparently is common practice in many hospitals....during my late Dad's lengthy hospitalizations in the past few months (at two different hospitals) he, too, was supposed to phone in his meal choices. If he didn't call by a certain time, or missed a meal, someone came to his room with a menu and waited to write down his choices. Unfortunately, much of that time he was mentally confused and/or drugged and/or impatient and unable to decide/place his order. Thus began long months of different family members sitting by his bedside for 12 hours or more per day to not only help manage his meals but also to alert the very busy nurses when he needed bathroom assistance (he couldn't always find the "call" button) or other minor emergencies . We were "lucky" in that we had the available personnel (brother is currently laid off from work, I work from home and have a flexible schedule, Mom is retired), but for most folks it's nigh impossible to have a personal advocate keeping vigil. Maybe you can talk to the hospital ombudsman, or a nursing supervisor and leave a list at the nurses' station on your husband's floor with his food preferences (explaining that he is sometimes unable to phone in his orders)? (And best wishes for a full and speedy recover to your hub!)
posted by Oriole Adams at 3:23 AM on May 25, 2011
My experience is that when someone is really out of it thanks to serious illness, pain meds or age it is essential to have someone there for as many hours as day as possible. With kids or the elderly someone staying 24 hours isn't unreasonable. I would keep a log - write down your questions, people's names - who told you what, etc. If his meals are not being logged on a whiteboard in the room write them down too. You can be the person calling food service to order for him - we did this for my mother-in-law all the time when she was both too muddled and unable to read the menus.
Unfortunately in terms of actually talking to the doctors in charge of his care the ideal is to be there when they round - and the time will vary - somewhere between 5 and 9am often. Hospitals are not set up to share information with family members so it becomes really necessary to drop everything else and camp there. Nice trick when one has other obligations!
Good luck with his recovery and you getting through it all as well!
posted by leslies at 4:22 AM on May 25, 2011
Unfortunately in terms of actually talking to the doctors in charge of his care the ideal is to be there when they round - and the time will vary - somewhere between 5 and 9am often. Hospitals are not set up to share information with family members so it becomes really necessary to drop everything else and camp there. Nice trick when one has other obligations!
Good luck with his recovery and you getting through it all as well!
posted by leslies at 4:22 AM on May 25, 2011
My father-in-law just got home after a 10-day hospital stay due to appendicitis and its complications. It sucked for everyone involved, but of course him most of all. The most important thing in all of this is to remember that he's the one in pain, he's the one in the worst shape, and he needs you. You need to continue to take care of yourself so you can be strong for him and fight for his needs.
Also, reach out to your family for help, and make sure everyone knows where he is, as long as he's up for visitors. I know for a fact that the one thing that got my father-in-law through this incredibly emotional and distressing experience was frequent family visits.
posted by litnerd at 5:25 AM on May 25, 2011
Also, reach out to your family for help, and make sure everyone knows where he is, as long as he's up for visitors. I know for a fact that the one thing that got my father-in-law through this incredibly emotional and distressing experience was frequent family visits.
posted by litnerd at 5:25 AM on May 25, 2011
You may have done this already -- I suggest finding people in the hospital administration and surrounds that you can ask the four questions you have in your "short version" above. Some ideas: patient care advocate, your family doctor, supervising nurse, chaplain, admissions, finance office. Ask them all regardless of whether you think they can help, and ask them who else you can ask.
I sincerely hope this gets better for you soon.
posted by buzzv at 5:40 AM on May 25, 2011 [2 favorites]
I sincerely hope this gets better for you soon.
posted by buzzv at 5:40 AM on May 25, 2011 [2 favorites]
Response by poster: Thanks, folks. I'm going to try buzzy's advice to see where that gets me. I am also going to try to do as much work as I can over the hospital's wifi network, since that will put me at his bedside for a few more hours a day.
I can't be there all day every day, though. I need to sleep, shower, eat, feed the cats, buy groceries, and even just find a few hours to decompress every day. I'm not giving myself enough down time, and that's making it hard for me to sleep. Last night I couldn't get to sleep until after 1 a.m. - two hours beyond my bed time - and woke up an hour before my alarm clock - a bit after 5 a.m. SO tired.
I appreciate the advice that we draw on our support networks. His mom and step-dad are sitting some shifts at the hospital when I can't be there. Her last day of work before being laid off is only a few weeks out, and she can't get any more time off work to help, though. His dad is out of the country and can't help much. Beyond them, I don't feel I have anyone I can ask for help. (Most of our closest friends are in other cities; the one best friend I have out here is in the middle of her own medical crisis and needs more help than she is able to give.) I have been talking to a good friend and GI doc who lives across the country, and who's helped me understand a bit better what's happening here, as well as a few nurses I know who've also really helped a lot - but none of them are local.
Among the things that are frustrating me: I don't have the knowledge or context to understand how much I'm freaking out about nothing or blowing things out of proportion, and how much my husband really is getting inadequate care and attention. The doctors and nurses answer my questions, but they're understandably hesitant to be specific about outcomes, timelines and next steps when there are a ton of variables at play and there's not a lot of certainty. In addition, some of the stuff he's facing now involves things I'd never heard of before this week. We're giving briefings on risk and courses of action that are filled with jargon and statistics and expected to act on this information without really understanding what's important, what isn't, and what everything means.
posted by croutonsupafreak at 7:10 AM on May 25, 2011
I can't be there all day every day, though. I need to sleep, shower, eat, feed the cats, buy groceries, and even just find a few hours to decompress every day. I'm not giving myself enough down time, and that's making it hard for me to sleep. Last night I couldn't get to sleep until after 1 a.m. - two hours beyond my bed time - and woke up an hour before my alarm clock - a bit after 5 a.m. SO tired.
I appreciate the advice that we draw on our support networks. His mom and step-dad are sitting some shifts at the hospital when I can't be there. Her last day of work before being laid off is only a few weeks out, and she can't get any more time off work to help, though. His dad is out of the country and can't help much. Beyond them, I don't feel I have anyone I can ask for help. (Most of our closest friends are in other cities; the one best friend I have out here is in the middle of her own medical crisis and needs more help than she is able to give.) I have been talking to a good friend and GI doc who lives across the country, and who's helped me understand a bit better what's happening here, as well as a few nurses I know who've also really helped a lot - but none of them are local.
Among the things that are frustrating me: I don't have the knowledge or context to understand how much I'm freaking out about nothing or blowing things out of proportion, and how much my husband really is getting inadequate care and attention. The doctors and nurses answer my questions, but they're understandably hesitant to be specific about outcomes, timelines and next steps when there are a ton of variables at play and there's not a lot of certainty. In addition, some of the stuff he's facing now involves things I'd never heard of before this week. We're giving briefings on risk and courses of action that are filled with jargon and statistics and expected to act on this information without really understanding what's important, what isn't, and what everything means.
posted by croutonsupafreak at 7:10 AM on May 25, 2011
Response by poster: Another note before I head out for my first hospital visit of the day: He's no longer allowed to eat. He's got a complication called ileus, which apparently is much more common among appendicitis patients who don't get enough food in the first 24 hours after surgery (though it likely would have developed anyhow, as the surgeon cut an intestinal blood vessel during the appendectomy, and that kind of trauma is often linked to ileus). As I understand it, his lower digestive tract just stopped moving things along. If it worsens or doesn't improve, he'll need a nasogastric tube to pump air and other stomach contents out through his nose. He had growing distention and pain for more than 24 hours before doctors ordered the X-Ray that led to his diagnosis.
I don't know if I should be outraged about the bleeding during surgery, or if that's a sometimes-unavoidable risk or the result of an unfortunate, but reasonable, human error. I also don't know if I should be outraged about the fact that he didn't have food pushed on him, or if I'm mistaken in my assumptions about how this stuff works. And when they did start feeding him they shoved a lot of food at him before noticing his growing discomfort and belly distention, despite the fact that they are inspecting his abdominal incisions regularly - I don't know if I should be upset about that, either. I don't know what's normal, what's reasonable, or how to find out, and that is very distressing as I try to get my husband taken care of.
posted by croutonsupafreak at 7:19 AM on May 25, 2011
I don't know if I should be outraged about the bleeding during surgery, or if that's a sometimes-unavoidable risk or the result of an unfortunate, but reasonable, human error. I also don't know if I should be outraged about the fact that he didn't have food pushed on him, or if I'm mistaken in my assumptions about how this stuff works. And when they did start feeding him they shoved a lot of food at him before noticing his growing discomfort and belly distention, despite the fact that they are inspecting his abdominal incisions regularly - I don't know if I should be upset about that, either. I don't know what's normal, what's reasonable, or how to find out, and that is very distressing as I try to get my husband taken care of.
posted by croutonsupafreak at 7:19 AM on May 25, 2011
Regarding this: I don't know if I should be outraged about the bleeding during surgery, or if that's a sometimes-unavoidable risk or the result of an unfortunate, but reasonable, human error.
I would definitely document this and remember it, but right now the most important thing is to make sure he's as comfortable as he can reasonably be and recovering. So continue to pay attention to his comfort and recuperation as it's happening now, and worry about what happened in surgery later. Yes, it's worth worrying about eventually, but not until your husband is out of the hospital.
Similarly for these items: I also don't know if I should be outraged about the fact that he didn't have food pushed on him... And when they did start feeding him they shoved a lot of food at him before noticing his growing discomfort
Focus on learning from these instances to improve your husband's care, and worry about whether you should be outraged later. There will be LOTS of time for outrage once your husband is healed and at home. Now you know that the nurses will let him miss meals, which means they might let him miss other things (e.g., medications). It sounds like you are already spending lots of time at the hospital, which is good for your husband. Continue spending that time understanding his care and don't waste time worrying about whether you should be outraged. The next time something is missed, such as a late medication or a nurse not noticing that your husband is getting more uncomfortable, bring it up immediately with the nurse. You should be focused on the present while learning from the past, and focused on working with the nurses to get him the right care now and in the future rather than worrying about past issues. Yes, these things are concerning. But focus on learning how to help your husband get the care he needs by working with the nurses.
Finally, about this: The doctors and nurses answer my questions, but they're understandably hesitant to be specific about outcomes, timelines and next steps when there are a ton of variables at play and there's not a lot of certainty.
It's true that they can't tell you when your husband will be better, or what meds and procedures will be ordered 24 hours from now. But (I Am Not A Clinician or Patient Advocate) they should absolutely be able to tell you what meds he is on RIGHT NOW, and when the next administration time for each of those is. They should be able to tell you what tests and procedures are scheduled for the next 24 hours. Basically, they should be able to give you a pretty good estimate of what's going to happen for the next 12-24 hours. Write all of that down, and if something doesn't happen (a lab isn't drawn or a medication is more than an hour late) ask why.
Finally, talk with two people: the patient advocate at the hospital - the Charge Nurse should be able to tell you who it is. The advocate should be able to help you navigate the care process. Second, talk to your family physician. They should be able to give you some insight and help clear up some of the confusion you're experiencing.
posted by Tehhund at 8:27 AM on May 25, 2011
I would definitely document this and remember it, but right now the most important thing is to make sure he's as comfortable as he can reasonably be and recovering. So continue to pay attention to his comfort and recuperation as it's happening now, and worry about what happened in surgery later. Yes, it's worth worrying about eventually, but not until your husband is out of the hospital.
Similarly for these items: I also don't know if I should be outraged about the fact that he didn't have food pushed on him... And when they did start feeding him they shoved a lot of food at him before noticing his growing discomfort
Focus on learning from these instances to improve your husband's care, and worry about whether you should be outraged later. There will be LOTS of time for outrage once your husband is healed and at home. Now you know that the nurses will let him miss meals, which means they might let him miss other things (e.g., medications). It sounds like you are already spending lots of time at the hospital, which is good for your husband. Continue spending that time understanding his care and don't waste time worrying about whether you should be outraged. The next time something is missed, such as a late medication or a nurse not noticing that your husband is getting more uncomfortable, bring it up immediately with the nurse. You should be focused on the present while learning from the past, and focused on working with the nurses to get him the right care now and in the future rather than worrying about past issues. Yes, these things are concerning. But focus on learning how to help your husband get the care he needs by working with the nurses.
Finally, about this: The doctors and nurses answer my questions, but they're understandably hesitant to be specific about outcomes, timelines and next steps when there are a ton of variables at play and there's not a lot of certainty.
It's true that they can't tell you when your husband will be better, or what meds and procedures will be ordered 24 hours from now. But (I Am Not A Clinician or Patient Advocate) they should absolutely be able to tell you what meds he is on RIGHT NOW, and when the next administration time for each of those is. They should be able to tell you what tests and procedures are scheduled for the next 24 hours. Basically, they should be able to give you a pretty good estimate of what's going to happen for the next 12-24 hours. Write all of that down, and if something doesn't happen (a lab isn't drawn or a medication is more than an hour late) ask why.
Finally, talk with two people: the patient advocate at the hospital - the Charge Nurse should be able to tell you who it is. The advocate should be able to help you navigate the care process. Second, talk to your family physician. They should be able to give you some insight and help clear up some of the confusion you're experiencing.
posted by Tehhund at 8:27 AM on May 25, 2011
Response by poster: Thanks, Tehhund, that's extremely helpful. I'll ask to talk to the patient advocate today.
Unfortunately, Mr. Supafreak has only seen his primary care provider once, because he's on a relatively new-to-him insurance plan that precipitated a change in doctors. I guess I should figure out who his doctor is and call her/her office, though.
posted by croutonsupafreak at 8:40 AM on May 25, 2011
Unfortunately, Mr. Supafreak has only seen his primary care provider once, because he's on a relatively new-to-him insurance plan that precipitated a change in doctors. I guess I should figure out who his doctor is and call her/her office, though.
posted by croutonsupafreak at 8:40 AM on May 25, 2011
Hmm, in that case the PCP might not be as helpful - usually they're most helpful when there's an established relationship. You can certainly reach out to them, but talking to the patient advocate + continuing to talk to your friend who is a GI MD might yield better results.
Something small that just occurred to me - start building a relationship with the charge nurses as well as each and every nurse that is assigned to take care of your husband. Make nice, introduce yourself, and learn their names. Since your husband is having a rough time there will probably be times that you want to scream at them, but if they generally know you as a nice person it will be easier to get 10 minutes with them to understand what is going on with your husband's care. Moreover, I once read a study that said that when nurses know a little something about the patients they're caring for, outcomes improve (going off memory here, but I'm pretty sure that was the upshot). I wouldn't bother sharing lots of details about your husband, but if the nurse knows you as his advocate and as a pleasant person, that will win some attention from the nurse and help them focus on caring for him.
As you spend time at the hospital, pay attention to the good times to ask questions. If your husband seems to be doing worse or a medication is more than an hour overdue, that is always a good time to talk to the nurses. But when you need 10 minutes to get a summary of the day's treatments and write them all down (like I advocated in my previous post), look for the quieter times. Hospital units and the nurses that staff them are very busy, but there is definitely an ebb and flow if you pay attention. There are certain times when the nurses have lots of meds to administer. There are other times when the nurses are busy with other care tasks like drawing labs, checking wounds, or moving patients so they don't develop bed sores. Between those very busy times, the nurses still have lots to do, but they have more flexibility to talk to you for 10 minutes before returning to their paperwork.
Also, here's a little tip: realize that doctors and nurses live is separate worlds. Connected worlds, but separate. They each have different roles and different ways of thinking when it comes to caring for your husband. So it's normal (but not good) to occasionally see differences between what you hear from a nurse and what you hear from the doctor. This is why your presence is so important - you can be a check to make sure the doctor has properly communicated the care plan to the nurse and the nurse has properly communicated the patient's status to the doctor. They're all on the same team, but like any team sometimes the participants aren't on the same page.
I also agree with the people who advocated taking care of yourself. Once you know your husband's treatment plan and rough schedule for the day, you can look for slow times to go buy groceries and feed the cats. Fortunately, you can buy groceries for the week and then not worry about it. And since cats don't have to be let out like dogs, you can probably stock them up with food and water for 2-3 days and not worry. And as you get a feel for when things start in the morning and when things slow down at night, you can build your routine around those times. Maybe you'll stay 7am-7pm with a break for a couple hours in the middle of the day, and then go home to play with the cats, shower, and eat. Maybe you'll choose a different schedule. It's tough, but you can probably balance being a presence in your husband's care with getting enough rest and a little downtime. Good luck to you and your husband!
posted by Tehhund at 9:27 AM on May 25, 2011
Something small that just occurred to me - start building a relationship with the charge nurses as well as each and every nurse that is assigned to take care of your husband. Make nice, introduce yourself, and learn their names. Since your husband is having a rough time there will probably be times that you want to scream at them, but if they generally know you as a nice person it will be easier to get 10 minutes with them to understand what is going on with your husband's care. Moreover, I once read a study that said that when nurses know a little something about the patients they're caring for, outcomes improve (going off memory here, but I'm pretty sure that was the upshot). I wouldn't bother sharing lots of details about your husband, but if the nurse knows you as his advocate and as a pleasant person, that will win some attention from the nurse and help them focus on caring for him.
As you spend time at the hospital, pay attention to the good times to ask questions. If your husband seems to be doing worse or a medication is more than an hour overdue, that is always a good time to talk to the nurses. But when you need 10 minutes to get a summary of the day's treatments and write them all down (like I advocated in my previous post), look for the quieter times. Hospital units and the nurses that staff them are very busy, but there is definitely an ebb and flow if you pay attention. There are certain times when the nurses have lots of meds to administer. There are other times when the nurses are busy with other care tasks like drawing labs, checking wounds, or moving patients so they don't develop bed sores. Between those very busy times, the nurses still have lots to do, but they have more flexibility to talk to you for 10 minutes before returning to their paperwork.
Also, here's a little tip: realize that doctors and nurses live is separate worlds. Connected worlds, but separate. They each have different roles and different ways of thinking when it comes to caring for your husband. So it's normal (but not good) to occasionally see differences between what you hear from a nurse and what you hear from the doctor. This is why your presence is so important - you can be a check to make sure the doctor has properly communicated the care plan to the nurse and the nurse has properly communicated the patient's status to the doctor. They're all on the same team, but like any team sometimes the participants aren't on the same page.
I also agree with the people who advocated taking care of yourself. Once you know your husband's treatment plan and rough schedule for the day, you can look for slow times to go buy groceries and feed the cats. Fortunately, you can buy groceries for the week and then not worry about it. And since cats don't have to be let out like dogs, you can probably stock them up with food and water for 2-3 days and not worry. And as you get a feel for when things start in the morning and when things slow down at night, you can build your routine around those times. Maybe you'll stay 7am-7pm with a break for a couple hours in the middle of the day, and then go home to play with the cats, shower, and eat. Maybe you'll choose a different schedule. It's tough, but you can probably balance being a presence in your husband's care with getting enough rest and a little downtime. Good luck to you and your husband!
posted by Tehhund at 9:27 AM on May 25, 2011
I was in the hospital for six days for a ruptured appendix earlier this month. (I did not, however, develop an ileus.) You're getting great advice here, especially on keeping your approach with staff friendly and persistent. Small anecdotes which may be useful:
-- Getting a full night's rest when your vitals are being taken every few hours is just about impossible. I gave up on it as a standard, and aimed instead for sleeping whenever I could, even if it meant I had visitors.
-- Thanks to complications and especially to morphine, much of my early discomfort was simply being too hot or too cold. A visitor offering to put a blanket over me or bringing me a damp washcloth, depending on the situation, was beyond awesome. So was anyone who was willing to help me clean myself up in any way.
-- When it was time to get my digestive system going again (I started with nil by mouth), my doctor prescribed chewing gum. It was hilarious to have a little stick of Trident arrive in a med cup twice a day, but it did help.
-- My insurance did not initiate any communication with me until a week or two after I was discharged -- and that was to notify me my stay had been approved. Get in touch with them if you're concerned, of course, but no communication from your insurance does not necessarily mean bad news.
-- I cannot nth "take care of yourself, do not worry about noncritical chores, be pissed off about various things later" hard enough. You will need to be in all-around good shape not only for his hospital stay, but afterward. It might seem selfish, but I promise: Your being rested and having a positive attitude will help your husband tremendously.
I wish a speedy recovery to him, and comfortable caregiving to you.
posted by gnomeloaf at 11:18 AM on May 25, 2011
-- Getting a full night's rest when your vitals are being taken every few hours is just about impossible. I gave up on it as a standard, and aimed instead for sleeping whenever I could, even if it meant I had visitors.
-- Thanks to complications and especially to morphine, much of my early discomfort was simply being too hot or too cold. A visitor offering to put a blanket over me or bringing me a damp washcloth, depending on the situation, was beyond awesome. So was anyone who was willing to help me clean myself up in any way.
-- When it was time to get my digestive system going again (I started with nil by mouth), my doctor prescribed chewing gum. It was hilarious to have a little stick of Trident arrive in a med cup twice a day, but it did help.
-- My insurance did not initiate any communication with me until a week or two after I was discharged -- and that was to notify me my stay had been approved. Get in touch with them if you're concerned, of course, but no communication from your insurance does not necessarily mean bad news.
-- I cannot nth "take care of yourself, do not worry about noncritical chores, be pissed off about various things later" hard enough. You will need to be in all-around good shape not only for his hospital stay, but afterward. It might seem selfish, but I promise: Your being rested and having a positive attitude will help your husband tremendously.
I wish a speedy recovery to him, and comfortable caregiving to you.
posted by gnomeloaf at 11:18 AM on May 25, 2011
Make sure you contact your insurance ASAP to inform them of the situation because some of them require notifications within X days of emergency medicine. The best way to make sure it's covered is to notify them yourself; you'll be able to wait to deal with bills and such later.
posted by bookdragoness at 12:31 PM on May 25, 2011
posted by bookdragoness at 12:31 PM on May 25, 2011
nth taking care of yourself! That means getting sleep where you can, eating meals, calling those far away friends for support.
Get a journal that you can keep by your husband's bedside so that you can jot down questions as you think of them and are not overwhelmed when the doctor or nurse comes by. You can also use this journal to communicate between yourself and anyone else that is able to stay with him.
I know, I understand, you do not know anyone that can help directly. But can a neighbor look in on the cats? Can a work colleague bring by some fresh fruit to eat or brownies? Can a friend of the father or step mother stop by for a couple hours (perhaps they know a retired nurse or someone who loves to care take)? Even try Metafilter, etc. People really want to help you and they really want to help you in small specific ways. No one wants you to do it all. And you are the one who is going to have to figure out the insurance, make final decisions about treatment, be the primary care taker.
And help the nurses advocate for you and your husband! Bring them some food (order in brownies - chocolate really helps), learn their names, look them in the eye, if something is important tell them EVERY TIME they walk in the room and if you have a white board have them write the important stuff on there. Nurses went into their profession because they want to help people, sometimes now that they are working it feels like they are just checking off boxes, but help them view your husband as a person they are trying to help! (And yes, you will get along with some better then others.)
My thoughts will be with you both.
posted by mutt.cyberspace at 2:01 PM on May 25, 2011
Get a journal that you can keep by your husband's bedside so that you can jot down questions as you think of them and are not overwhelmed when the doctor or nurse comes by. You can also use this journal to communicate between yourself and anyone else that is able to stay with him.
I know, I understand, you do not know anyone that can help directly. But can a neighbor look in on the cats? Can a work colleague bring by some fresh fruit to eat or brownies? Can a friend of the father or step mother stop by for a couple hours (perhaps they know a retired nurse or someone who loves to care take)? Even try Metafilter, etc. People really want to help you and they really want to help you in small specific ways. No one wants you to do it all. And you are the one who is going to have to figure out the insurance, make final decisions about treatment, be the primary care taker.
And help the nurses advocate for you and your husband! Bring them some food (order in brownies - chocolate really helps), learn their names, look them in the eye, if something is important tell them EVERY TIME they walk in the room and if you have a white board have them write the important stuff on there. Nurses went into their profession because they want to help people, sometimes now that they are working it feels like they are just checking off boxes, but help them view your husband as a person they are trying to help! (And yes, you will get along with some better then others.)
My thoughts will be with you both.
posted by mutt.cyberspace at 2:01 PM on May 25, 2011
I had a quite long hospital stay after a ruptured appendix about two years ago, and it was awful. Mostly because of the ruptured appendix/emergency surgery recovery aspects, but partly because of the actions of some in the hospital.
I can definitely sympathize with your husband's bleariness. I was on an incredible mix of painkillers for the first 3-4 days and was incredibly out of it - everything from just not knowing what was going on to actively hallucinating. I had absolutely no idea how to answer questions about which painkillers were helping, etc. After 3-4 days they took me off the constant morphine and gave me a pushbutton to drug myself with it instead, and things improved drastically. See if that's an option?
In terms of sleep - I don't think I slept through a night for weeks post-surgery, both because of constant monitoring/medication changing and just the rampant, ridiculous uncomfortableness of the giant incision in my belly. This one's probably a lost cause, frustrating as that is.
As far as the food goes, apparently appendix surgery can have one of two results: your digestive system shuts down and you need to try hard to get it back started, or your digestive system goes into overdrive and...well, you spend a lot of time in the bathroom. My case was the latter, so it sounds like I had a quite different food situation from your husband. In my case, I had nothing but juice/broth for a good while, slowly working up to jello. At some point, I was allowed back on solid food, but a major miscommunication sent me salisbury steak in terrifying sauce instead of the bland food I was supposed to be on. A rather incensed call to the hospital from my stepfather straightened that one out nice and quickly, but, again, it was important to have an advocate because I was so out of it.
In general, we found it much easier to get information from the duty nurses than any of the MDs, who were just too overworked to really spend much time with me in recovery.
Also, definitely make sure to take care of yourself. There's really not all that much you can do to make your husband feel better. It sucked for all the folks visiting/advocating for me, and equally as much for me, to realize that. It's important for you to be there often, but not always. A lot of my recovery was spent in a half-awake haze, and just talking to people was exhausting before long.
So, basically, be there to talk to the staff and answer the questions he can't, but don't overextend yourself fruitlessly. Neither you nor he can speed up the recovery by any particular force of effort, it'll just take time and suck a lot.
Feel free to MeMail me if you want to talk or have any more questions - I'm more than happy to try to help out others who've been stuck with this situation. Best wishes to both of you!
posted by Rallon at 2:34 PM on May 25, 2011
I can definitely sympathize with your husband's bleariness. I was on an incredible mix of painkillers for the first 3-4 days and was incredibly out of it - everything from just not knowing what was going on to actively hallucinating. I had absolutely no idea how to answer questions about which painkillers were helping, etc. After 3-4 days they took me off the constant morphine and gave me a pushbutton to drug myself with it instead, and things improved drastically. See if that's an option?
In terms of sleep - I don't think I slept through a night for weeks post-surgery, both because of constant monitoring/medication changing and just the rampant, ridiculous uncomfortableness of the giant incision in my belly. This one's probably a lost cause, frustrating as that is.
As far as the food goes, apparently appendix surgery can have one of two results: your digestive system shuts down and you need to try hard to get it back started, or your digestive system goes into overdrive and...well, you spend a lot of time in the bathroom. My case was the latter, so it sounds like I had a quite different food situation from your husband. In my case, I had nothing but juice/broth for a good while, slowly working up to jello. At some point, I was allowed back on solid food, but a major miscommunication sent me salisbury steak in terrifying sauce instead of the bland food I was supposed to be on. A rather incensed call to the hospital from my stepfather straightened that one out nice and quickly, but, again, it was important to have an advocate because I was so out of it.
In general, we found it much easier to get information from the duty nurses than any of the MDs, who were just too overworked to really spend much time with me in recovery.
Also, definitely make sure to take care of yourself. There's really not all that much you can do to make your husband feel better. It sucked for all the folks visiting/advocating for me, and equally as much for me, to realize that. It's important for you to be there often, but not always. A lot of my recovery was spent in a half-awake haze, and just talking to people was exhausting before long.
So, basically, be there to talk to the staff and answer the questions he can't, but don't overextend yourself fruitlessly. Neither you nor he can speed up the recovery by any particular force of effort, it'll just take time and suck a lot.
Feel free to MeMail me if you want to talk or have any more questions - I'm more than happy to try to help out others who've been stuck with this situation. Best wishes to both of you!
posted by Rallon at 2:34 PM on May 25, 2011
Response by poster: My husband is showing signs of improvement and I hope to have him home soon. This thread helped me better understand the health care landscape I was facing, seek out a "interpreting the hospital" guru within the health system, and feel better in general. I still am pretty disturbed about many aspects of my husband's experience with this hospital, but it's going to take me a while to fully process this.
posted by croutonsupafreak at 1:03 AM on May 27, 2011 [1 favorite]
posted by croutonsupafreak at 1:03 AM on May 27, 2011 [1 favorite]
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Oh hell, that's unacceptable. You find the office of the hospital's omsbudsman and you explain that the hospital is not meeting basic medical standards. Then insist the ombudsman immediately escort you to the chief of administration.
But if you can, talk to your family lawyer first.
posted by orthogonality at 12:29 AM on May 25, 2011 [5 favorites]