10 Things to tell ICU patient’s families to make an ICU stay easier.

In my last two posts, I talked about the 10 things that would make an ICU stay easier for patients, and 10 things not to do. (If you want to read those posts, click on “home”, and then scroll down.)

In this blog post, I’ll talk about 10 Things to tell patients families to make ICU stays easier.

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A stay in an ICU means that somebody is sick enough or been injured enough for the family and friends to be worried about death, or the future life of their family member.

The family and friends may be in shock or emotionally distraught.

Extra problems like parking might seem too hard to cope with.

For that reason, here are 10 things to tell ICU Visitors to make the stay easier for themselves and the patients.

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1.) Tell visitors where the waiting rooms are.

My mother drove in the ambulance with me, and my brother met her at the hospital doors.

They followed me and my stretcher right into the operating room, before someone told them “This is the OR, you can’t be here”, and gently lead them to a waiting room.

I’m thankful they weren’t just kicked out without anywhere to go.

2.) Tell visitors about parking.

The hospital I was in, has the most confusing parking system ever, with multiple entrances to the parking lot, and a complicated pay before you stay system.

Tell visitors, how the parking system works. If you can get daily, weekly or monthly passes, tell them they are available and where these passes are sold.

3.) Tell visitors about the cafeteria.

Tell them where it is, what the hours are, and who can go there (just staff, staff and visitors).

4.) Tell them to keep an ICU diary, to help their family in the ICU.

When I woke up from sedation, I had no memory of what happened and plenty of questions. I’ve seen tweets about ICU diaries. Tell the families, about this, and give them the option to keep a diary.

5.) Tell visitors to take pictures, but do not post them on the web.

My mother took many pictures of me while I was in the ICU. When I was able, I airdropped them from her phone to my phone. Sometimes when I’m feeling down I look at them. They comfort me because they remind me how far I have come.

6.) Tell visitors about ICU rounds.

What time are they? Can family go and listen? Can family ask questions?

7.) Tell family the ICU visiting hours, if there are any.

8.) Tell the family where they can get information on what the patient has.

Many families will have questions and will turn to the internet for help. Tell families, about good websites about the conditions the patient has. This will cut down on getting lies from the internet.

9.) If you are going to give a timeline of when a person gets better, make it realistic.

My father was told I would be recovered 3 months after discharge. It’s more than 2 years to fully recovered.

It was a disappointment to all of us, when 3 months came by and I was still very sick and week. If I was fully recovered, why was I still so week? Was that what the rest of my life would be like?

10.) Tell families about any support groups in the area or at the hospital.

If your hospital has an ICU support group, tell the families about it. Inform them how to register, and or become involved.

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Note: I realize during this Covid19 pandemic, the stress ICU and hospital staff are under might make these things harder to do.

Please take this a suggestions to help, and not finger pointing?

And again thank you for doing what you do.

Almost 10 Things not to do to make an ICU stay easier +1.

I’ve been debating doing this blog post, because it is more negative than the last.

This post and the last post started as one blog post, titled things I want ICU doctor’s to know, but eventually I cut all the negative out of the last blog post and titled it “10 Things that can make an ICU stay easier”. If you haven’t read it, it’s still here. Just go to Home, and then scroll down one post.

I know that working in the ICU must be stressful. I’ve been reading tweets of ICU staff for 2 years now, but…

Well here goes.

If you are still reading this, thank you.

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Almost 10 Things not to do to make an ICU stay easier +1.

1.) Don’t ask your patients to describe the day before they went to the ICU. They will not remember.

I went to the ICU during the coldest time of that year. Oddly enough the day before I went into the ICU, it was a nice warm winter day, that ranged between -10 and -15 Celsius.

By the time I woke up from sedation, the temperature plummeted into the -40’s Celsius. Cars wouldn’t start, nurses wore warmed blankets around their shoulders, and the ICU staff conversations revolved around proper winter clothing, cars starting, and scrapping snow and ice off windshields.

My parents couldn’t start either of their cars and therefore couldn’t visit for 2 days.

During those 2 days I was awake enough to be asked questions.

The ICU doctor asked me to describe the day before I went into the ICU.

I said it was a normal day.

He questioned further “anything unusual happen”.

“No”

“Were you feeling sick?”

“No”

“Any nausea or diareaha?”

“No”

The questions continued like this, until he left.

What he didn’t know was although I was telling the truth, from my perspective, it was extremely inaccurate.

Because I had no memory of the day before I went into the ICU, I thought it was a normal day with no memorable events. I also thought but did not say, that there was a severed human foot at the base of my bed where he stood.

It neither shocked or scared me. I just thought “so that’s where they keep amputated limbs”.

I didn’t know I vomited violently the night before, and was so week I couldn’t walk to my bed without assistance after vomiting.

This was all written out in detail in my diary, and my mother told me about it afterwards, but the doctor never found that out. I didn’t remember, I didn’t have any visitors to tell him any differently, and I was too sick to think of telling my parents to correct what I had said when they could visit.

A diagnosis was made with wrong information.

I used to think, that it didn’t matter what the story was, because doctor’s diagnosed using diagnostic tests. I thought doctor’s were just being snoopy when they asked questions like that. It wasn’t until I started reading the tweets of those of you I follow on twitter that I realized the patient history is used in making a diagnosis.

2.) Do not assume your patient doesn’t have delirium.

I may have been thinking amputated feet were kept at the bedside, but I didn’t mention it. I didn’t think there was anything out of the ordinary, about it. Why would I interrupt the doctor’s questions to ask whose foot that was?

I didn’t say anything when the coffin rolled by either. I assumed that a patient had died, and that’s how they took dead bodies out of the hospital.

3.) Be aware that delirium is a thing, and tell the ward the patient is going to afterwards that it is a possibility.

I wasn’t actually diagnosed with delirium or ICU psychosis. I was diagnosed with hallucinations after, asking a nurse if there were fire works on the ceiling or was I developing schizophrenia?

She explained that neither was the case. “Sometimes when a person swells up because of a allergic reaction like you did, their brain swells up too, causing hallucinations. Do you want me to ask a doctor for medication to make it go away?”

“No”, I said “I’ll just enjoy the light show and go to sleep”.

I didn’t sleep that night. Instead I had entire conversations with people who weren’t there, and saw babies crawling in the snow outside.

In the morning I was moved to a private room because I kept the other people in my first room awake all night by talking.

After being in the hospital for a few weeks the speech pathologist, very nicely leaned over to me, and said “I think you have ICU psychosis, but nobody in the ICU realized it because you are so smart and hid it so well. I just thought you should know that’s a thing.”

4.) Do not assume that delirium means your patients are completely wrong about everything?

I may have had delirium, but I knew the names of the medications I was taking, and I knew why I was taking them.

Has delirium ever caused anybody to know things they didn’t know before?

I was getting the proper medications in the ICU, but once I was transferred to the ward, the med student changed them.

When I asked for one particular drug that I can not live without, he told me nobody took that for anything.

Would I really be able to come up with the accurate name of a real drug, that I was taking just a few days before, because of hallucinations? (The delirium I wasn’t even officially diagnosed with).

5.) Do not lie to your patients. They won’t believe anything you say afterwards.

When I was in the ward after the ICU, a med student told me “I know everything there is to know about kidneys”, and then refused to contact my nephrologist or the community pharmacist who helped decide what medication I should take.

I knew that was a lie. If he knew everything there was to know about kidney’s he’d be a nephrologist, not a med student (who knows even less than a resident).

He lost all my respect and trust, with one lie. What he said didn’t matter to me at all after that.

6.) Do not let med students and residents work on patients who are critically ill.

After that the med student came in and told me what “the team” decided, and asked me questions “the team” wanted to know. He was always by himself.

He wasn’t educated enough to work with the critically ill. Having to talk to the doctor through an intermediary is the most garbled kind of communication ever. I didn’t have any trust in him after he lied, and I’m sure he didn’t translate my concerns or questions properly.

I should have been able to talk to the doctor myself, not use this intermediary that worked as well as a wonky walkie talkie.

7.) Do not insist that you know more about your patient’s long term health problems than your patient does.

I have been living with a variety of health problems since I was born. My first diagnosis was “failure to thrive” and imminent death.

Obviously I didn’t die, and as I grew older, my parents were given different and better diagnosises.

I may not know everything about every health problem, but I know about mine, my body, the medications I take, why I take them, and what tests need to be done when I am not feeling good.

Because this med student assumed I didn’t know any of that, he refused me medication I knew had to take, and he verbally bullied me, which leads me to #8.

8.) Do not bully your patients.

During one argument with him, I realized he could do anything. He could rape me right there in my private room if he wanted and I would not be believed, because he had all the power.

He had the power to say anything that would make him look good and me look bad. I was the one who just got out of the ICU a few days before and had documented “hallucinations”. I was the one who was “crazy”, and he was the supposedly sane, educated one.

It’s a terrible feeling to know you don’t have any power over your own health or body. I knew he was making mistakes, but he wouldn’t believe me that my kidney function could not be measured by a blood test, or that I was on some rare medication to keep my kidney function as high as possible.

I knew that if I didn’t get that medication soon, I would never get better and would just die there in the hospital from kidney failure.

9.) Do not consider your patients to be learning tools.

I am a person. I have my own life, my own thoughts, and my own emotions.

I have a family who loves me, and an important role of caregiver and at times care receiver in that family.

I have my own likes and dislikes.

My body might not work 100%, but I am 100% human.

I am not a stethoscope, MRI machine, or textbook. Unlike those things, when I break, I either die or suffer irreparable harm.

I am not a learning tool.

And as such, I should never have been treated like one when I was in the ward after the ICU.

I realize this is in the ward after the ICU and the ICU staff have no control over what happens after a patient is discharged from their ward, but I also realize I have control of this blog, and this is what I want to say.

I am a person. I am not a learning tool.

My experience after the ICU should never have disintegrated into arguments, a feeling of powerlessness, or the threat to sue that med student for everything he had, just so I could get the proper medication.

If he had seen me as a person, and not some talking learning tool, it might not have become that.

Please teach your students, that patients are people? It seems so obvious, and shouldn’t have to be said, but obviously some students don’t understand that.

I wish that a prerequisite to meds school was to actually have a chronic or long term health problem. That would make students empathetic and less likely to see their patients as living text books.

10.) Do not tell your patients to “Just Walk”.

I was so often told “just walk, you’ll leave the hospital faster if you walk”, but I wasn’t given any assistance in walking.

My balance problems and fear of falling were not addressed until 18 months later, when I finally saw a physiotherapist (one I asked to see).

Telling somebody to do something, they are afraid to do will cause even more harm because it makes the patient feel hopeless, helpless, judged, and hated.

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10 Things that will make an ICU stay easier:

Time…

It goes too fast when you’re having fun, like at an amusement park.

It goes to slowly when you’re not having fun, like at the dentist.

It becomes completely indiscernible, when you’re under sedation. My nephew and brother seemed like they were the same age.

It becomes untrackable when you’re deprived of any form of time tracking devises.

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Laying on your back, staring at the ceiling in a basement room without windows, makes time indiscernible. Combine that with delirium, illness that makes you so tired it’s hard to keep your eyes open, and ICU staff that come and go at odd hours, and the days just blend into each other.

When I wasn’t sedated, but still in the ICU I tried to keep track of time. As mentioned before I asked for paper and a pen as soon as I woke up from sedation. I tried to make a small calendar on one of those pieces of paper, and figured out the day by asking how long I had been there and when I went in there. When I thought the day changed, I marked it off on the calendar.

When I went to the ward (just the first bed that would take me), I continued with the calendar. The days were easier to follow, because the window allowed me to tell the difference between night and day.

But…

All this could have been helped, if people told me the time, and the day, or if there was a clock on my ceiling.

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The ICU is a very different place for patients than it is for staff. Being in a bed, with all those tubes and wires, and having to rely on others is different than standing beside the bed and being in control.

I remember trying to change my bed position to sit up a bit, and completely messing up the buttons on the bed. It wasn’t like a normal hospital bed. It was more like a waterbed. I wondered if a person needed a nurses degree to move the bed, and why it was so complicated.

I was rescued by a nurse that asked what I wanted to do. I whispered my reply because my voice was still very week.

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With that understanding in mind, I know that somethings just simply get overlooked because the experiences are so different.

I’ve made a list of things that can make life easier for your ICU patients.

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1.) Put a clock on the ceiling.

2.) Tell your patient what day it is and what time it is every time you see them. Say something like “Good Morning, it’s 10:00 am on Sunday, Jan 4”, or something like that.

3.) Tell your patients where they are. Include the name of the hospital and ward.

4.) Tell your patients why they are in the ICU.

I had no memory of going in.

I confirmed my parents storey by reading my diary entries for the days before I went into the ICU, because I had no memory. It triggered faint memories of the day before.

5.) Tell your patients who you are each and every time you see them.

If I ever knew who people were, I didn’t remember them by the time I saw them the next time. People did have name tags hanging around their necks, but they often hung so the name faced their shirts and not me. I remember one man, telling me something, but I had no idea who he was. I tried reaching out and turning his name tag around, but I just couldn’t reach my hand out to him.

In the back of my brain I knew touching him wasn’t appropriate, but I also desperately wanted to know his name, and position.

Because I couldn’t talk I couldn’t ask him.

He finally walked away without me ever knowing who he was, what his qualifications were, or even what he said. I was just to focused on the name tag to listen.

Note: Normally I wouldn’t have been so inappropriate to reach out to a stranger but all those meds, and my need to know who he was, changed the situation. I felt it was my only option.

6.) When you’re patient calls, answer.

After I woke up from sedation, but still couldn’t get out of bed, a nurse almost learned this the hard way.

He was sitting at the end of my bed doing paperwork when I called him. Instead of answering, he got up and walked away.

It was hard for me to call him because I was so weak. I kept calling because I had to use the bed pan.

Finally another nurse came to my bedside and asked what I wanted.

If that nurse hadn’t come at that time, my nurse would have had a big mess to clean up.

7.) Provide pain killers upon discharge from the ICU.

Having a tube stuffed down your throat with such force that it scapes the inside of your esophagus hurts and it leaves a lasting wound.

The pain in my throat was much more than the sore through you get from a cold. It was a raw wound all the way down, and it took about 6 months to completely heal. I thought the doctor used a drill to make me a new throat because my old one had clogged up.

To combat that I was offered cough candies. This was in the ward after the ICU, not the ICU. Cough candies do not help. That’s like offering a bandaid to a wound that needs stitches.

Painkillers, or throat spray or something I haven’t heard of is what’s needed.

The pain behind my nose where the feeding tube went in was also sore, but not as sore. It too took months to fully heal.

Make sure the ward the patient goes too, knows that the patient is in pain and cough candies are not good enough to stop the pain.

8.) Provide GURD medication.

The acid of acid reflex rubbing on a throat that has been damaged that way is agony.

Please prepare for this, and make GURD medication a normal part of treating somebody after they are extubated.

9.) Explain… everything

Explain the procedures you are going to do, and why you are doing them.

Explain the medicine you are giving and why you are giving them.

10.) If a patient is not compliant ask what the problem is.

After I was extubated I refused to eat or drink. Although my nurse implored me to I just wouldn’t do it.

I wasn’t being non-compliant just to be difficult and make the nurse have a bad day.

I wasn’t eating, because I was afraid to vomit.

When the doctor pulled out my feeding tube, he told me “Ok, don’t throw up, or we’ll have to do this all over again.”

I didn’t know I had been intubated, extubated and intubated again, because I threw up and aspirated before. I had no memory of that. I didn’t know I had pneumonia, or sepis after being intubated the first time. I didn’t even know why I was in the ICU.

What I did know, was I couldn’t vomit if I had nothing in my stomach to vomit.

Not eating seemed like the best option.

If the nurse had asked me, and then explained what happened, I might have eaten then.

In the end the nurse asked what I most wanted to eat, and then got that stuff for me from the cafeteria even though it was unhealthy.

It sat on my beside table for a while before I finally consented to eat it. I may have resisted the temptation in the beginning but not forever.

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To all the ICU staff: Thank you for doing what you do.

To all who are still reading this: Thank you for reading this blog.

If you like what you read, please share, like and retweet it on twitter, follow me on twitter or follow me on this blog.

In my next blog post I will give some things of what not to do, and in my blog post after that I will give some things of how to help visitors to the ICU.