How do you feel about photos being taken of criti... - ICUsteps

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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
ICUsteps-PeterAdministrator

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?

26 Replies
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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,

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.

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

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.

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
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.

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 ...

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.

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.

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.

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.

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.

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.

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
ICUsteps-PeterAdministrator

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

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!

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.

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.

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.

I don't have any photos, it was only my mum who came to icu when I was intubated and in my coma, my dad and son couldn't visit as they were both very ill with that horrendous flu that killed people in 2017 and 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 and is the type of personality that thinks to know these things is unimportant. All that matters is it's over now according to her, it's not over now though for me, there are huge chunks of time missing, and I feel invaded by things happening to me I had and have 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 they couldn't move me without intubating and inducing into coma to try preventing my death and save my life. Who intubated me, Who took off my clothes and put on my hospital gown, who inserted my catheter and 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 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 she spoke to me? Did I cough? Sneeze? Move my legs a bit or arms, fingers? Did I Iook peaceful or like death? Was I covered up? How often did she visit me? How long for? Did anybody else visit with her? What did the icu nurses tell her? What did the icu nurses do to me when she was there? Was she there when they woke me up? Did she know they were going to try waking me? And so many other unanswered questions. I ask my mum but she gets annoyed and says she can't remember, or it was ages ago, even when it wasn't ages ago, which it still isn't she claimed it was and that she couldn't remember. What day was it they called her to tell her I was expected to die? And did she come in to say goodbye? And then the second time I was thought about to die and they called her, did she come in again to say goodbye? Why didn't she even think knowing my personality and knowing the questions I would ask her, even think to take a photo? Or make notes for me. I did get a critical care file once on a normal ward, but no photos in it which I had expected when told I was getting the file, just brief notes from people who looked after me whose names mean nothing to me, and the names of the nurses I do recall once I'd been woken are not in the file even though they cared for me, and the file 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 and out of drugged sleep. I want to go back to icu, but 14 -15 months later I still don't feel well enough to, and 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 and my parents had brought my handbag back with my phone in it. I couldn't use my phone my phone instantly though, to heavy for me to even pick up, and couldn't control my hands or arms to make a call and get it to my ear, plus I couldn't even figure out how to work it properly, it felt like it weighed a ton, and 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, and my muscles 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
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
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!

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.

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.

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.

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

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