Recent discussions around here reminded me that it's time again to talk about what it's like to be in a hospital, and how to survive the experience.
But first, as we move into the last two weeks of our very-successful Donors Choose challenge, I'd like to invite health care professionals in particular to participate. Gifts are tax-deductible and help out needy Michigan school kids with specific, vetted projects that are often useful for several years.
Micro-donation is a great way to go. While big gifts are great, even a couple of bucks add up quickly, especially on challenges with Gates Foundation matching.
The economy has hit health care hard, and many of us in health care have seen our patients disappear and our own incomes drop. But most of us are doing better than the families of these kids. If a couple of bucks helps even one kid get excited about learning and some day join our ranks, it's worth it. To finish funding my original projects will only cost about $1000.00, an easy goal to make by the end of the month. So c'mon docs and nurses. C'mon CRNAs and EMTs. Fork over a couple of bucks and help the kids. OK, end of digression.
Being ill is a profoundly humbling experience. Even minor illnesses change the way we think, not just about mortality and finances, and other "big things", but it changes our ability to think. Let's take a relatively mild illness as an example. Kidney stones are horribly painful, but rarely fatal. The pain is exquisite, and impairs one's ability to reason. The medication used to treat the pain further impairs one's memory and judgment. If a little IV fluid and some hydromorphone fixes everything, fine. But let's say the urologist is asking you whether you want to go through with a stent, a stone-removal via basket, a lithotripsy, or something else. Trying to parse through this complex information when in pain and stoned on Dilaudid is a challenge.
The impaired judgment of illness is no joke, and everyone needs an advocate to help collect and understand information, and also to help insure good care. Hospital safety is undergoing a quite revolution, thanks to initiatives such as Keystone, but it never hurts to have a second set of eyes and ears.
An advocate can help you through your stay, but if you want your caregivers on your side, make sure you pick people who aren't there to pick a fight. Doctors, nurses, and aides are there to help and to do a job. You can and should help, but you should stay out of the way and avoid antagonizing people. An advocate doesn't have to be a single person, but it helps to talk to your friends or family before a hospitalization if you can.
So here are some specific recommendations for patients and their advocates, which are unfortunately not evidence-based, but mostly good despite this.
- Try not to be alone: loneliness and fear are not good for you.
- Ask your caregivers in a very non-threatening way if they washed their hands and stethoscope before examining you.
- If you've been told not to get out of bed, don't. People in hospitals fall. If you are ringing for assistance and no one is coming, ask your advocate to go looking for help. It's terrible to soil oneself, but better that then breaking a hip.
- If you're told to get up and move around, do it. This prevents blood clots.
- Write down names of doctors with their specialties. Doctors often don't communicate well with each other, so it helps to know who is who.
- Pain and discomfort is usually treatable and serves no beneficial purpose. It's OK to ask for pain medicine. Sometimes the answer is no, and for good reason, but usually the answer is "I'll be there as soon as I can with your medicine."
- If you have tubes running in and out of you, there are protocols to make sure they are changed appropriately. Feel free to ask if an IV or other tube still needs to be there.
- Write stuff down, but as a courtesy, explain to caregivers that you're helping your friend remember what happened. If the doctors have a big decision to drop on you, jot down everything you can, including questions. Be prepared to write down questions that come up later. If they don't have time to answer your questions right away, acknowledge that and ask when they will have time. Be flexible. Your nurse may have someone in the next room falling over, and one across the hall with chest pain---your time is important but so is theirs.
- Don't bother complaining about the food.
Don't bother complaining about the food.
We have to eat it too and don't like it any better.
A huge general piece of advice would be to keep handy a list of all your medications and bring it to every doctor appointment and to the hospital.
For my mom's long hospital stay, there were four of us rotating through to advocate for her. We kept a notebook so we could keep up with as much as we could, and try to coordinate what we were told, what the current recommendations were, and questions we had. It was very helpful.
Pain and discomfort is usually treatable and serves no beneficial purpose. It's OK to ask for pain medicine. Sometimes the answer is no, and for good reason, but usually the answer is "I'll be there as soon as I can with your medicine."
What about the opposite situation?
I can't tell how much hydrocodone I've had to dispose of, and if there's one thing that really bugged me during a hospital stay last year, it was having to convince the nurses that I was not in pain, didn't require pain meds, really wasn't about to be in pain, had had no pain since surgery the day before, etc.
After a while you get worn down and accept the stupid pills, then feel like shit.
dans favorite thing about hospital stays, is the food.
Try not to be alone: loneliness and fear are not good for you.
The only time I spent any length time in a hospital (to have my gallbladder removed- three days) I found this to be true. I had previously had several outpatient procedures done, and I didn't think it would be a big deal as I was being admitted. I was wrong.
I may be in the minority but I thought the food was good. At least what I was allowed to eat ;)
If you're on lots of opiates and advised to take laxatives - take them!
Learned this one the hard way.
My first real exposure to hospitals was visiting a friend with CF. It was pretty unlike what almost every other hospital visit is like. When her FEV1 dropped below about 50 percent or so, she'd go in for extra breathing treatments and IV antibiotics - more of a "maintenance" visit, compared to the acute, critical events that bring most people in. She was always well enough to be her own advocate, and was pretty much raised to do so her whole life. Of course it helped that her parents were both medical professionals, and strongly determined for her to be as self-reliant as possible.
The main enemy was boredom, and sitting around too much. So I'd stay just about every evening, until she went to sleep. We'd play a lot of games, watch movies or TV, go for walks around the hospital grounds. I'd bring in food from restaurants, or various comfort-food snacks - one time, I snuck in some raspberry lambec for new years (we heard a story from some nurses about another CF patient a few years back who was hauled back by the police when he snuck out to a new years party at a nearby hotel and passed out drunk- with his medical ID tag still on). There were a lot of fun times - not what you usually expect in a hospital.
I can confirm that sending comments about bad experiences can result in positive changes. I blogged about experiences my Dad and stepmom had with malfunctioning beds. It wasn't just call buttons not working, but the mattresses deflating as well.
While there were other problems, we felt the bed problems were absolutely inexcusable.
My sister emailed my blog post (I hadn't yet named the hospital) to the hospital and after a round of phone conversations and further emails, a meeting was set up between our family and hospital staff and administrators.
We didn't get a lot of time to talk during that 2 hour meeting because we were told in explicit terms about concrete steps they'd already taken to prevent what we had complained about from happening again.
I blogged about the meeting too and how pleased we were with the outcome.
Another thing that probably helped is that we never threatened a lawsuit. Though my stepmom did fall, she wasn't injured (an amazing thing since she was in for a hip replacement!) We were surprised that the hospital did not have a lawyer present at the meeting, since they knew my brother was a lawyer. We could not ethically hide that fact, though he made it clear he was attending as a son, not a professional.
So yes, complain!
I once knew a woman who had terminal cancer, and was in hospital, expecting to live for another week. She was in excruciating pain and asked for morphine. The nurses - not the doctors - refused to give her any...on the grounds that she might get addicted.
Her husband took the doctors to one side and had one of his "quiet intense" words with them. After fifteen minutes stalling (just for the sake of appearances?) they prescribed morphine - and she died peacefully a week later.
I'm not saying this is the norm - my own hospital stays all had sensible and helpful staff. And flirty orderlies :-). But I would not have handled the nurses idiocy as well as the husband did.
Kapitano - the issue of addiction is so controversial when chronic pain is involved.
My 2nd stepmom (it's the 3rd stepmom referred to in #9) got hospice care at home for the last four months of her losing battle with cancer. It was the only time I had a serious disagreement with my step-brother when he opposed giving his mother morphine for fear she'd become addicted.
She was on a good round of drugs designed to keep her pain to a minimum. (A significant amount of this pain was due to severe shingles following chemo.) Methadone, ativan, and morphine kept her physically functional until just a few days before she died.
Since the cancer had metastasized to her brain, mental function (rationality) really could not be preserved. As she had been horribly mistreated and sexually abused as an orphan raised by uncaring relatives, there were times that only a female could comfort her. This broke my father's heart, but he understood it. (He had known her since childhood.)
Since my step-brother and step-sister were still raising their own children and, unlike me, had to go to work every day, I moved in to help my father care for my stepmom. He also hired home health care providers to help, as she really could not be "unsupervised" at all.
We were (are) fortunate that our family can financially and emotionally provide this kind of care which NO insurance can, whether public or private. The emotional part is directly connected to the financial part. There's a lot more emotion available for comforting when one is not shackled financially.
And therein lies a conundrum. My father could have financially afforded the best nursing home care possible for his wife. Yet, his viewpoint was that this woman deserved better -- better being defined as living as "normal" a life as possible regardless her condition.
Part of the reason for this is that his wife cared for in her home, her grandmother (who did not protest the abuse from her step-grandfather) and caring for in her home her husband's parents and her husband after a devastating stroke.
Everyone agreed with my father's announcement that he'd spend his last dollar caring for this woman in her own home and keeping as much as possible of the daily routine she had established over the years.
One of the oddities my stepmom latched onto was being cuddled at night because she was cold. My father could do this for a while, but soon he found himself sweating and unable to sleep.
Yeah, it sounds strange, but quite often my stepmom would be surrounded by "daughters" surrounding her in bed. I think women may be better able to extend and absorb body heat than men. Occasionally, my father would awaken in the morning exclaiming "too many women in here!" Thank goodness for a king sized bed.
But also, thank goodness my stepmom did not have to spend her last days isolated from human touch in a hospital-type bed. She craved and was comforted by touching another human... this cannot be had in any institutional setting.
However, I can also assert that this craving of human touching is not universal. My mother did not want or crave it. While she wanted our presence and our conversation, touching was in some way painful for her. Maybe it was fibromyalgia... maybe it wasn't.
Whatever it is, one-size-fits-all insurance cannot provide the actual health-care that people need, whether in the last stages of life or somewhere in the interim.
@D.C.Sessions: Having been in both positions, I'm going to say flushing vicodin down the toilet is definitely my preference over spending the night in a hospital with no pain relief (yes I did ask, yes I was told no, and, yes, in the morning I was told it was an error). Being trapped somewhere in pain with no recourse leaves scars, and a profound sense of shame for *having* those scars.
On a lighter note, I have to say the food at the hospital where I volunteer looks pretty good. Better than anything I've ever had on an airplane, for sure.
On the next day's menu choices, I write in "Green salad, fresh fruit, fruit juice, extra milk." and I generally get them.
In addition to avoiding being lonely, its also important to avoid being bored and frustrated. The hours can tick by ever so slowly and there is only so much television most of us can watch. Being bored can lead to more worrying so it is good to keep the mind occupied.
Try to bring lots of reading materials, single person games, a notepad for writing a journal or ideas, etc. Anything that can help pass the time is a good thing.
When I took my mom to the ER last month (trip and fall, sprained foot) I simply dumped all her pill bottles into my purse so we could the admitting nurse could read them. Easier than writing them down.
"If you're on lots of opiates and advised to take laxatives - take them!
Learned this one the hard way."
Me too -- emphasis on "hard"! :-P
Regarding hospital food, I find that while complaining about it is fruitless, joking about it is a great way to establish a friendly rapport with the staff. Misery loves company. ;-) (That said, most hospitals these days seem to have pretty good food, though my grandmother always finds something to complain about. She *hates* being in the hospital, and the staff deserve sainthoods for putting up with her so graciously.)
Sadly, I think that family member's of patients with terminal illness sometimes protest pain meds (due to addiction concerns) because they are in denial about the losing their loved one. It might be helpful for other family members to emphasis that the loved one needs relief so that they can get some rest and "feel better".
I've been under the impression that there's been much greater emphasis on pain control in terminal illnesses in the last 15 years or more years. That is definitely a change for the better. The idea of pumping someone full of chemotherapy and radiation (with all the short and long term consequences that brings) to slow a cancers progress, then denying adequate pain control was absurd. I'm not against chemo or radiation. They are very valuable tools. I'm just saying there's a reason my Grandma called it cremo-therapy.
One thing I'd add, if you have noticed any hearing issues or a family member is saying you are not hearing well, Go in a get that hearing aid. They are much better than they used to be. My dad was diagnosed with terminal cancer almost 3 years ago. He had progressive hearing loss and refused to get aided for years before that. It was so, so difficult to have discussion with his doctors and involve him in decisions when he could not hear 65% or 75% of what was said. The same goes for more minor illness and regular doctor visits.
Oh yeah, and take those laxatives.
One thing I do. Write down your question before meeting with the Doc. If you're in the hospital, write them down as you think of them or have your advocate/helper write them. Otherwise when the doctor asks "Do you have any questions?" my mind always goes blank.
I can not for the life of me think of a polite way to ask a doctor or nurse if they have washed their hands or stethoscope. Maybe it's because I'm from the midwest. I just feel like I'd sound like a catholic school nun.
One mom* I know recommended asking for the drugs and dosages given before a child's surgery, during post-op and hospital stay. Does this make sense? I wouldn't know what to make of dosages anyway. I do ask about the drugs, for future reference, just in case there is any negative reaction. Another mom* say that she always asks the person administering the medication if it is the right dosage for her child's particular weight. Is that better or paranoid?
*Mom's of kids with cleft lip and palate.