How do you feel about photos being taken of critically ill patients to help them better understand how sick they were later on in recovery?

[ICUsteps-Peter]

Many hospitals don't allow relatives to take photos of patients in critical care. Do you have photographs of when you were critically ill? How do you feel about them? If you don't have photos, do you wish you did?

[barbsky]

No photos taken - it was not allowed! I so wish that I had a visual image of how I looked then. My really close family could not go through seeing their Mum in such a bad state again. I would just like to have a peek at what they would have looked at for eleven days,

[Dawnie328 in reply to barbsky]

I have photos at first I was ok with it but then after awhile I didn't want to see them so deleted them and asked my family to do the same as far as I was concerned it wasn't me. X

[Zara1]

I've no idea whether the hospital I was in would have allowed it or not. I would have liked to see a photo, but I'm not sure any of my family would have thought it was appropriate at the time.

[jolou]

my family were encouraged to take photos of me. they found it difficult to do at the time. i am very glad they did. it helped me visualise a period of time that passed me by that i had no control over. it helped me understand what my family went thru seeing me so poorly, and it helped others understand the seriousness of just how ill i was.

i would definitely encourage it, as they never have to be seen by the patient should they not wish to, but at least they have that option as they start to recover

[Luckyone]

The hospital I was in does take photographs of you if requested by a family member but I had no wish to see any as I had so many tubes and wires attached to me and my family told me I looked about 20 years older, I have a photo of when I first got home which I find very difficult to look at as I looked so drawn and aged in the face.

[footy30]

My family didn't take any photos of me. I'm not sure whether this would have been allowed? I do think it may have helped me at the time of recovery . I found myself searching on the internet for anyone who may have had a similar experience just so that I could see what they looked like.

[Mijmijkey74 in reply to footy30]

I did exactly the same. still do. Never found anything similar to what went on with me through knowing so little about what did. The not knowing actually messes with my mind.

[Mystery]

I wouldn't have liked a photo, I saw my mum in Icu many years ago so know what it looks like, I went back a year after my discharge to look around icu land was shown the ventilators I was on, I know what I would have looked like and feel huge emotions when I think about what my two sons saw....I know it upset them greatly to see the state I was in afterwards, so thin and not even able to make a cup of tea!! I can't see what good a photo can do for anyone, you are lucky to live, be grateful and move on, photos are for happy memories, I don't know whether photos are allowed in derby or glen field but I do know that my sons were allowed to bring a bouquet of flowers into Icu, this is not normally allowed but rules were bent because they were told it was my last moments... Luckily it wasn't and I do recall seeing those flowers when in and out of consciousness, that is a wonderful picture to remember ...

[Mijmijkey74 in reply to Mystery]

I will say that having a photo of being on a ventilator is not a unhappy photo at all, but a positive one for those whom survive it. It shows us just how positively strong to survive we are and reminds us when viewing said photo or photos of just how far we have progressed recovery wire. Sad/bad/awful photos can also be positive reminders to not go back to where anyone of us previously were in any given situation that caused battle or unhappiness or anger/rage. A person whom found themselves with a serious drug/alcohol problem or in a terrible relationship may us a photo or photos positively as reminders to never go back to where they were and gain positive strength from that or those photos just seeing how far they have come and view them feeling ultra proud of themselves and the strength they have within themselves to get away or get out of it.A photo for me of myself intubated in a coma would be a positive thing to see, not negative or unhappy. It shows my battle, my fight, my determination, courage and strength all rolled into one. No sadness or negativity at all. It must also be remembered that not everyone on a ventilator in a coma looks dreadfully ill. Some of us simply looked as if just sleeping peacefully, the critical illness or injury/injuries hidden from view inside the body. I was told I just looked asleep and a bit poorly, there were of course wires/tubes and machines beeping away, but apparently looked just a bit poorly, and mostly at peace, sleeping peacefully. That I certainly didn't look critically ill. l guess though, that fact is what may have caused problems for my Mum when visiting me in my coma and her understanding of just how critically ill (not just a bit poorly) I actually was, and that fact also caused problems for my whole families understanding of just how critically ill I was, and still was once awake and in recovery mode because apart from a completely blood shot blown eye, and me looking very thin (I'm naturally very skinny anyway) there was nothing to indicate critical illness/serious illnesses within me. My family and even friends still don't understand just how critically ill I was nor understand now that I am a very poorly person. Those whom didn't view me in my coma ventilated wouldn't gain any further understanding from being able to view a photo of me ventilated in my coma, because I just looked a bit poorly only, my eyes were closed so my head was completely bloodshot blown eye wouldn't be visible on any photo apparently. And naturally I am very skinny and pale skinned. It was all internal. Though as I don't have a photo I can't clarify that as actual fact, but my Mum had no reason to lie, it was my Mum who told me that and nurses without prompting from me. Though of course I asked questions, but my questions went unanswered by my Mum because she wasn't informed enough and hadn't taken in when told by nurses/doctors/specialists just how critically ill I was, because to her and others afterwards I apparently didn't look it. Though sure I know it impacted my Mum as unbeknownst to me, my Dad was also extremely poorly at the same time being seen as an outpatient. I And my Mum probably thought she was going to lose us both. My Dad doesn't grasp at all what my Mum went through. It flies over his head seemingly because he has no memories of his own illnesses and just how extremely poorly he himself has been. I remember and knew also of just how critically ill I was myself even prior to my hospital/ICU admission. I have Nobody then was listening though, because to them I simply looked a bit poorly, but internally I could feel I was becoming critically ill and could feel myself dying unable to understand why doctors weren't listening, scans were coming back normal, as were blood tests. Yet just less than a small handful of very close friends did see just how ill I was and expressed concerned. Those are unblinkered friends who truly see when all others including medical professionals do not. I wasn't and nor were those less than small few wrong to be extremely concerned and express it. People rarely see what is abundantly apparent right in front of them. They switch off their brains to it, not wanting to face the truth before their very eyes. My family and other friends do that. It is difficult to get anything through to them. Tone deaf ears, blinkered, brains switched off, rosy vision switched on behind blinkers.

[mike999]

They were not allowed, but my brother sneaked one on his iPhone. I am very glad he did. I have no difficulty in looking at it (in fact he is the one that finds it unpleasant!). It helped me understand and come to terms with that missing month, and to apprecate what my family went through.

I can understand the reasons for a ban on photos, but perhaaps the staff could take them and keep them until patients go back to their de-brief and decide if they want them. I would also have appeciated photos of the people who looked after me and saved my life. I have met some, but many are just names in the diary.

[Offcut]

I had one taken at Coventry before I was put on an Ossicilator. But still had plenty of tubes and wires sticking in me. which gave me an insight of what my family were seeing from the bedside. When I was concious all I could see was a few pipes and leads. I am 100% behind having a photo and it is up to the relatives to choose to see it.

[LucyT]

My husband took a couple of photos because he thought they might be the last photos he took of me alive. They have really helped me for a number of reasons - I didn't believe I was ill until I saw the photos of me on a ventilator with tubes everywhere. He also took some pictures when I had my trachy, again I am very grateful because I also didn't realise that had happened! My family find them difficult to look at but when people ask me about my illness I show them the photos if they want to see them as I think they show how ill I really was - it is also a good reminder to me as I've still not recovered fully and it all happened over 4 years ago and it makes me reassess how far I have come since then rather than what I still can't do.

[lesleyG1965]

My Parnter took a couple of phots of me.......It really helped me I am so glad that he did it does help you realise how poorly you have been.

[Kulta]

I have many photos and videos taken and find them helpful not only to me but to 'prove' to others how poorly I was. When I returned to the unit I thought patients looked at deaths door and was told that is how I looked. I have happily shared this with medical students with before and after shots too. I regularly look at the footage and am glad I have them.

[mandijt]

I had 1 photo taken of me by my sister and it was months before i was able to look at it. I wished i hadnt! I wasnt prepared for what i looked like with the ventilator in, central lines, drips, machines - it was like something out of a horror movie and i was so distressed knowing how hard it would've been on my family seeing me like that for days on end - as i hadnt been expected to survive. I still find it hard to talk about my time in ICU, and i'm reminded every night when i'm woken with a panic attack.

[heartz]

I just discovered that my late husband's daughter posted a picture of him on Facebook. He was a very strong man and was diagnosed with cancer and died within three weeks. I think pictures of him in a coma or heavily sedated are not only inappropriate but down right offensive! He died five years ago and instead of posting pictures of him in happy times, his family often posts the "deathbed," pictures. I don't understand why anyone would want to expose these pictures to the general public. I believe it's attention-getting behavior. And by the way, they are always in the pictures with him. It's just disgusting.

[ICUsteps-Peter Partner ICUsteps]

Dear Heartz, I'm so sorry to hear you've been upset by these pictures and can certainly understand. I've been happy to share my pictures for many years now, though as an ICU survivor I appreciate the context is very different and I've shared them to help raise awareness of the legacy of critical illness.

The difficulty we face is that for survivors, photographs are an incredibly helpful tool in helping us come to terms with our experiences and what we've endured. Sadly, fear of abuse and litigation have meant that many hospitals have taken the stance in the past of banning photographs and thereby robbing patients of that opportunity later on should they wish to see them. Of course the main issue is around consent, and my belief is that they should be taken but subject to the patient's retrospective consent if and when they're able to give it.

With smartphones and social media it's becoming ever harder to prevent images from being taken and sadly I believe it's those who don't think of the consequences or who ignore the rules and guidelines who make the process so much harder to deal with for the rest of us.

Again though, I'm sorry to hear of your distress and hope you and your family are able to resolve this.

Best wishes,

Peter

[heartz in reply to ICUsteps-Peter]

Peter, thank you for the comments. I appreciate your experience and why photography is helpful after a major illness/injury. However, as a RN I respect patient's rights to privacy. My husband was dying, there was no hope! He worked on Feb 2, 2009 and died Feb 27, 2009. His family often recorded him in video and photos. I often thought to myself, "if that was me...the camera would be placed under the tires of my car." I found it so offensive but kkept my opinion to myself because I didn't want to upset him. My focus was on keeping him out of pain and calm.

When I saw the "deathbed" photo on FB yesterday, all my anger over his death & how his family turned it into their own private circus, hit me square in the face!

[Superking39]

I have photos of myself and I don't look like me but it helped me to give up smoking as I looked at it every time I wanted a cigarette.was in icu for asthma I stopped breathing on the way to hospital. I now have small holes in lungs due to smoking.

[Gemini19]

I took a photo of my husband when he was in intensive care for three weeks due to a deep neck infection. He recovered and when I told him I had a photo on my phone he was very keen to see it. I think it helped him deal with what he had gone through and now looking back I am glad that I took the photo.

[stevet11753]

I would like to be able to see what my family had to see, and to give me a window onto a missing part of my life.

When the nurses sat me on the edge of the bed for the first time (it took three of them) I was convinced we posed for a photograph. But no, it was just my imagination; I would've loved to have seen it, as it was a major breakthrough for me.

[Mijmijkey74]

I don't have any photos, it was my Mum who was the only family allowed into icu to see me when intubated in my coma. My dad & son couldn't visit, both unbeknownst to me were very ill with that horrendous flu which killed a lot of people in 2017/2018. I was in icu in jan 2018. My Mum isn't able to tell me anything about what went on, how I looked, what they did to me, what they told her, she noticed nothing & is the type of personality that thinks to ask anything is rude, & to know important things about what is going on/being done to loved ones is unimportant not her business & to do ask, say, do anything other than sit quietly is otherwise interfering & disrupting far superior people than her, Mum was never going to take in much of anything doctors/nurses told her & l don't mean that disrespectfully towards my Mum. It is just how my Mum was/is. All that mattered according to Mum was that it was all then over according to her because I left hospital eventually. It wasn't all over then, nor is it over now for me, There are huge chunks of time missing, I feel invaded by things happening to me I had no idea about. Just simple things, like what happened in the ambulance " Mum wasn't with me" what happened in A&E "Mum wasn't with me" what time was it when they decided my condition had become so critical that they couldn't move me without intubating & placing me into an induced coma. In order to try an prevent my death & try save my life. Who intubated me, Who took off my clothes & put on my hospital gown? Who inserted my catheter & where & when? Where did I go prior to icu? What did I look like in icu when my Mum arrived the next day? What time was it when she arrived? Were my eyes open or closed? Or taped shut? What did my face look like? What did the tube in my mouth look like? What side was it on? Did I move at all? Blink? How was I lying? How many tubes were on/in me? Was I breathing for myself as know I was on a machine that allowed me to take my own breathes also? Did I respond in any way when my Mum or any nurses/doctors spoke to me? Did I cough? Sneeze? Move my legs/arms/fingers a bit? Did I Iook peaceful or like death? Was I covered up? How often did my Mum visit me? How long for? Did anybody else visit with my Mum? What did the icu nurses tell her? What did the icu nurses do to me when Mum was/wasn't there? Was Mum there when they woke me up? What time was it? Did Mum know they were going to try waking me? And so many other unanswered questions. I have ask my Mum, but Mum gets annoyed & irrate with me which is not right if she is withholding things from me. Though personally believe Mum took so little in that she gets annoyed/irrate with me for her own inability to have retained more & it is Mum feeling inadequate about that, so instead makes up that it isn't important to hide that she just doesn't know & can't be honest with me about it, so Mum lies instead. Mum says she can't remember, or it was ages ago, even when it then wasn't ages ago,, & which it still isn't ages ago really 5 years in Feb 2023 since leaving hospital. Not long time ago to me still not fully recovered, still having hospital letters in the post & various appointments/treatments. Mum claimed it was then long ago & that she couldn't remember.

What day's was it they called Mum to tell her I was expected to die? And did Mum come in to say goodbye? And then the second time I was thought about to die and they called Mum, did Mum come in again to say goodbye? Why didn't Mum even think knowing my personality & knowing the questions I would ask her, even think to take a photo? Or make notes for me. I did get a critical care diary once on a so called normal ward, but no photos in it which I had expected when told I was getting the diary, even if photocopies, just brief notes from people who looked after me whose names meant & mean nothing to me & the names of the nurses I do recall once I'd been woken are not in the diary even though they cared for me, The diary ends when I woke up, even though I didn't leave icu until days later, so what happened during that time? I don't recall much as was drifting in & out of drugged sleep. I want to go back to icu, but 14 -15 months later " now much longer ago than 14-15 months later" I still don't feel well enough to & now feel it's to late. I do however I just remembered have some photos I took of myself when I was finally on a ward out of icu & my parents had brought my handbag back with my phone in it. I couldn't use my phone instantly though, too heavy for me to even pick up, couldn't control my hands or arms to make a call nor get it to my ear, plus I couldn't even figure out how to work it properly, it felt like it weighed a ton, it made me feel ill just trying to unlock it without being able to hold it up to see it, as I was laid flat on my back, my muscles had wasted away. I couldn't even raise my arms, or myself, or brush or touch my hair or face. So the photo's were taken some time later closer to the time I was nearing being released as an outpatient. Not shocking as no tubes, just cannula in my hand and haemorrhage in one of my eyes making it all bloodshot and scary looking.

[Hidden in reply to Mijmijkey74]

I currently have a relative in ICU and when visiting i was asked by his attending ICU nurse to make an entry in this notebook. I asked what this notebook was for and they said it is something that has become standard practice across hospital ICU units in the UK to help the recovery of the patient when the are well enough to leave ICU. It's basically done for the reasons you described, the not knowing.

In my relatives notebook, there are daily entries by the attending ICU nurse's (they work in 12hr shifts) as to what was done, if anything, They do not go into specific details on daily things, like noting every time a wash was given or hair was cut. The notebook does mention things about any relapses, any surgeries or medication need. It also mentions about times of ICU derilum, did the person have bad dreams, did they talk out in their sleep, did they act out in their sleep. A lot of the stuff you want to know is very specific and i have noticed none of questions you have asked in here appear in my relatives notebook so in my opinion it basically comes down to your relative, basically your mother, to ask them all those type of questions and then can relay the answers back to you when your well enough to hear them.

I notice in your post you say you was in ICU in 2018. The hospital you was in, the ICU unit would have most definitely kept a notebook and they give you a copy once you leave ICU. The doctor treating my relative has said that a copy of the notebook will be given to my relative once out of ICU to aid in their long term recovery. I am assuming the notebook will be given to my relatives partner. Did the hospital give your notebook to your mother? because there would have been one purely to help you answer a the majority of questions that you are asking.

Before you start going off on your parents about this notebook, firstly contact the ICU unit where you was admitted and ask them about it.

[Mijmijkey74 in reply to Hidden]

I did mention in my comment that I have a critical care file. However there is hardly any information in it to the questions I need answering. They are just names of ICU nurses I don't know and not who cared for me once they woke me. As you don't know me or my parents don't make assumptions that I'd go off at them. As mentioned also in my comment, only my mother could visit. Not both my parents, and again as I mentioned my mother is of the personality type that thinks things are not important to remember, or rather isn't observant enough to take notice or forward thinking enough to ask questions. She's not the type to ask questions, she thinks that wrong to do, and she's not able to retain anything much she is told, becomes muddled and confused. Can't retain details/facts instead just flaps and gets all red-faced and anxious. At least she visited, but her lack of ability to tell me even a small detail without becoming angry at me and flustered is frustrating and damned annoying!

[Mijmijkey74 in reply to Hidden]

Sorry my previous reply to you reads out quite snappy. It was unintended. My sincere apologies, l know you were trying to help. xI'm not sure if the note book you mentioned about is the same thing as the diary l was given. No entries in it from my Mum and it was prepared only after l had left ICU and was on a ward. It does include some information about nurses who cared for me during my coma and a few titbits about my progress but not enough at all to answer all my questions and it does mention a small amount about a day of when I was awake in ICU and they pushed the beds headrest up so I could watch TV. Do recall some of that day, but how they describe me as being as if I was having a great time and really engaged in the tv program is completely wrong. Do remember the tv being on I definitely wasn't engaged or even able to comprehend what they were saying it was all muffled, blurb and nonsensical as if they were talking in an alien language and to me it was just this very old fashioned box with incomprehensible weird sounds coming out of it, but understood it was tv and recognised the tv program and its hosts but wasn't taking any of it in really, it was all jumbled together and to stressful. I was staring at it l know but thinking SHUT IT UP, SHUT IT UP YOU STUPID NURSES, YOU JUST DON'T UNDERSTAND. TAKE IT AWAY IT IS FREAKING ME OUT BECAUSE IT IS SO STRANGE AND COMPLETELY CONFUSING ME ABOUT WHERE I REALLY AM AND WHAT YEAR I AM IN. BECAUSE I DON'T KNOW! I was freaked out by it and it was scaring the crap out of me making panic slowly rise inside me. I know l ended up shouting "though it would just have been a whisper as vocal cords damaged, but in my mind I shouted very loud and aggressively repeatedly eventually GET IT OFF or GET IT AWAY. They wrote in my ICU diary I was sitting up watching TV. Made it sound as if I was really well and nothing wrong at all. I was having a full on spaced out completely confused panicking melt down inside me and everything was surreal. I thought the tv was evil and it was all just merging together as sped up fuzz and I couldn't comprehend how they got the voices or them in that box, was sure l could open the back of it and get into it. I want to smash my foot through its screen to shut it up. Thought it was even the evil TV from Willo the Wisp. Wanted to hurl the freaky talking box across the room. Nothing made any sense but because I kept forgetting I even had a voice and could talk all my bewilderment and panic went on inside me as I stared at the alien surroundings in a world none of those nurses would ever understand or even see on my face. I wanted a mirror to see myself but couldn't even think what it was called or even how to describe it on the days I was reminded l had a voice and to speak as l was just making noises and randomly gesturing at things with my eyes and head at things they couldn't see as I saw them and everything often got lost in gesticulation. Even on the days I did speak it didn't come out right and l frequently couldn't be heard. I thought l was anywhere from aged 12 to my 30's.despite knowing my date of birth I felt I was either in the 80's or 90's and on an movie of that era movie set. That l was in the tv because everything looked so dated and so much like American TV does when watching it in the USA or watching it back in UK recorded in the USA. That funny burry fuzzy faded pasttal colourness it has to it as if a hazy dream. I knew l had a son and how old he was but couldn't put together how if I was only 12 or 17 and him 13, but if l was 32 or 34 and had been sent back to the future of 1984 by Dr foxx "that was Michael j foxes name in my mind" then maybe it was right but l was afraid I was stuck there without my legs and nobody would know who I was really, but even I didn't know who I was really. And if l had really been in 1984/85 I certainly wouldn't have been 12 but not long turned 10 or 11. And despite feeling all that not so much thinking it, I was also convinced I was in hospital in Stoke on Trent or Stafford and no idea how I'd got there but knew I had been in a coma. Thought my family were going to come visit me looking and dressed as they did in the 80's, then internal panic would set in that maybe I had been in the coma for years and my family was all dead, that maybe my body had been frozen and they were waking me up and something had happened in the world making it feel and look like the 1980's/90's again. So much confusion and still battle it now as my brain tells me I went into my coma in a different previous era and woke back up in it, but not in it and everything and everybody has changed. It was shocking to see my mum looking so much older and elderly more fragile but not frail. My son looked the same thankfully, but both parents in my mind should have looked as they did in the 80's/90's yet there was some slight awareness somewhere in my brain that they might not. There were thoughts too about them being robots and clones but can't put any of that into words as it is all just to mixed up and merged with everything else. I was basically not seeing/hearing/feeling/sensing/smelling/anything anyone else was. Knew my family were my family but they were different and glitchy. Everything faded/fuzzy/merged/changed as in regressed back to 80's/90's all staged and most people weren't really who they claimed to be, but out of kilter not quite right clones and the nurses in ICU danced at night in the amber lighting like ballet dancers levitating slightly off the ground but their feet were missing/invisible.

[Hpygrl50]

My family took pictures of me in rhotobed and in the icu while I was in a coma. I haven’t been able to look at them. I’m afraid to see them. It’s only been 2 1/2 months since I’ve been home ... maybe in time.

[KrisShack]

My daughter took exactly one of me, just to show me what it was like for her. I looked like a corpse with tubes and wires all over me. I was swollen and yellow, terrible. I hate that she had to see me like that. She promptly deleted it after she showed it to me.

[cowen2019]

I really wish I had pictures taken. It would have really helped me come to terms with it. I had a picture when I had woken up and still had tubes but its not quiet the same. I am the type of person who needs to know everything, what went on, why, by who etc and pictures would have really helped me visualise everything. I still don't feel like I was as bad as they say and I would have like to see what my partner and dad saw from they're point of view. It would also help if relatives were told to write a diary of things that happen, when and why and how they felt. If the patients wants to read it they or it can be destroyed. I have read that some hospitals the nursing staff take pictures and you decide whether to see them when you are well and if not they are destroyed. This is a great policy as it allows the patient a choice.

[Mijmijkey74 in reply to cowen2019]

I am like you in many ways cowen2019. And agree with everything in your comment.

[BigH63 in reply to cowen2019]

Hi Cowen2019

Please see my reply below.

I agree with you I’m also (Engineer) who needs to know every detail of that time. I as you see haven’t yet opened mine but will at some stage. I have just had a meeting convened on my bequest to understand what it was I had all the details and how in the shirt and long term they will affect me and my recovery and long term what it is I can do to improve my recovery.

Hope you ok

Regards

BigH

[BigH63]

Hi Peter.

I’m relatively new to ICUsteps.

I was in ICU back on the 8th of January 2023.

I have both photos taken by the hospitals medical photographer and a medical diary both of which I have not gained access to after nearly a year of psychotherapy. My partner has read and seen the photos. I’m glad I have them but don’t think I’m mentally able to cope with opening these up just yet.

I will at some stage. I was under the impression that all UK hospitals had both of these fir all critical care patients, as my daughter’s friend was on the national panel that set this all up

I think everyone should have the option of these if they care not to then that’s fine.

King regards

BigH