ICUsteps

[Peter]

My position is pro photographs.

To my mind to be pro-photographs is to be pro-choice. Photographs recorded while a patient was there, in that condition may not be pleasant to look at but they are a snapshot of a moment that happened. As the saying goes, the camera never lies.

Coming to terms with time in intensive care and the events that lead to time there is a hard path to follow and as with so many things in life, people cope differently. Some prefer to put it behind them, deny and ignore it and who has the right to force them to deal with their experience in any other way? These people would choose not to have photographs, not to be confronted with the very things they're trying to forget about and this too is fine. The crucial point is that they have the choice. To look or not to look, photographs are as much a record of what happened as medical charts, prescription, scans, x-rays and noticing a little scar you'd never seen before.

For those that wish to reclaim their lives, to understand what they’ve been through photographic records are invaluable. To be able to see what loved ones saw at a time when the outcome still hung in the balance allows the patient to better understand what their loved ones endured as well as providing them with another perspective with which to rebuild their understanding of a time from which they are likely to remember very little clearly.

To have photographs is to have the choice, to look or not to look as you feel is necessary for your own peace of mind. To have no photographs is to have the choice taken away from you.

It’s important through all this that the rights of the patient are protected. That any photographs taken of them when they are in no condition to give their consent are their property and should the worst happen, pass to their next of kin but pitfalls of our increasingly litigious society aside, photographic records capture a moment in time that we can later look back on as an aid to understanding. This can be a building block to repairing the mind as crucial as the events that took place in ICU were to repairing the body.

Choice is paramount.

[Katie & Craig]

Hi Peter,
You have raised a very interesting and also very important point in your article.

My partner (Craig) had an awful car accident in September 2005, he was in intensive care for 3 months before he was finally transferred onto a ward and then eventually home.
Whilst he was in ITU I was given a patients diary which I and the hospital staff wrote a day to day diary of what was happening with his condition etc.
Towards the end of Craigs stay in ITU the nurses and myself explained what the patient diary was, and asked if he thought he would benefit from reading about what had happend to him over the past few months but Craig wasn't interested, he didn't want to know, I kept the diary at home just in case Craig changed his mind.

Once Craig had been transferred onto a ward and then finally discharged from hospital he started to realise he had been in hospital for a very long time and also felt a large part of his life was missing, his 3 month old little baby was now a 6 month old little girl who was smiling, sitting up and even eating proper food.
This was a huge shock for Craig he had no idea what he had been through, all he remembered was being taken to A&E in a Ambulance and talking to the surgeons before his emergency operation.

Craig had now been home for a few days and asked me if I still had the diary, so he sat down on his own quietly and decided to read through what had been written, he found it very difficult to read at first and yes he did shed quite a few tears but once he had read through the diary a few times he actually thanked me for keepin the diary and strongly feels this diary played a huge role in his recovery and helping him deal with what he had been through.

Once Craig had ready his patient diary over and over again he asked me if we had any pictures of him whilst he was in ITU but sadly we didn't have any, but I did have pictures of the accident scene and his car after the accident, I was a little bit worried how Craig was going to react when he saw them, but I was pleasantly surprised, he was so pleased that we had taken these pictures, he said even though the nurses and his family etc had told him how lucky he was to even get out the car never mind survive the 3 mths of ITU he didn't really realise this until he saw these pictures.
He said these pictures completed a few of the missing pieces in his mind, but the remaining missing pieces were of his stay in ITU and seeing and understanding what he had physically been through, what he did really look like on a special moving bed with a huge inflatable mattress with big pillows round his head, back and legs, tubes in every part of his body, ventilators, various machines round his bedside.

If I could turn the clock back and do one more thing for Craig I would definetely go back and take lots of pictures from the day he entered ITU through to the day he left.

I think everyone who is visiting a patient in ITU should be advised to complete a patient diary, take pictures and even video record the patient during their stay in ITU. Even though at the time the patient may not feel like being photographed etc they may regret not having them during their recovery.

At at the end of the day the patient should have the CHOICE but Craig and I strongly feel they should make this choice after thier stay in ITU not during their stay.

[Barbara]

I was on ICU for 8 days in July. I asked my husband afterwards why he hadn't taken photographs and he said he'd asked and they had said no. It was a consent issue (I was ventilated and sedated and so could not consent) and they were worried about people posting videos on YouTube etc.
Yesterday I had a follow-up appointment (at my request as my Trust doesn't do them) with the Head of Critical Care and he said he would look into it as he thought it might be OK. I am arranging to visit my ICU because I need to see what I must have looked like to my family.

[Peter]

Hi Barbara,

I'm fortunate to have some photographs of my time in ICU. Like you I was sedated and as my admission was the result of an accident which left me unconcious (I have no memory of the accident, let alone admission to the ICU). Coming to terms that there had been an accident at all, let alone one that was life threatening was difficult enough but having photographs of myself during that time helped fill in the gaps in my memory and helped me come to terms with the experience. My dad took the photographs and he was asked by the staff if he had my consent, which he told them he did (though I was sedated).

I can't help thinking that this policy is one that puts the needs of hospitals (and their desire not to be sued) ahead of the needs of the patient in having an extra tool to help them understand what happened to them at a time when they were so very vulnerable. Whilst such a policy will deter most relatives who have the patients best interests at heart, it surely won't stop someone who was intent on 'mischief' taking a camera phone into the ICU and using it when no one's looking.

There are safeguards which need to be resolved to make sure the patient's privacy and dignity are respected but in my opinion a blanket ban of photographs is a cop-out. I think a visit back to the unit to see what it's like would be a help (follow-up clinics are a whole other issue) but even this is no substitute from seeing yourself as others saw you if and when you choose to view them.

[Phill]

I spent 32 days in ICU and was transfered to another hospital with an escort to their critical care unit. I was there for 10 days and they took a photo after they wired and tubed me up along with a diary entry from the nurse in charge of me. I was not aware of this move in any way, but I do think them taking the photo has helped me understand what my family were seeing and possibly feeling. I read the diary a few days after getting home. I feel I can understand their feelings and thoughts a little better.

I do think it should be done at all times and kept with the medical records and it is the choice of the patient to have it or not.
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We all have something to share.

[Barbara Wright]

Hi Phill
Good to know that you have found this site to let us know about your events in ICU and a Critical Care ward at another hospital. Your experience of having a photo taken of you when you were wired up was really interesting and has been mentioned by others on this site - I don't think there are many hospitals that will take a photo of a patient without their consent.

I would have liked to see a photo of me when I was 'sedated and wired' but one was never taken. Maybe my carers at that time were too traumatised by what I was going through and how I looked at that time.

As Peter said - he is pro photos and I certainly am.

Keep on battling Phill!

Barb
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Barbara

[Phill]

With regards to the photo I am adament that all hospitals should as a matter of course take them, but secure or put a date on desposal if not requested to be seen.
I must add though as I said it helped me but not the wife after a visit to Critical Care Unit aftercare meeting this week. We were taken to the ward and shown my room and the machinary excluding the oscillator. ( I lost 12 days ) I could put into perspective what others were seeing looking in. But it bought all the memories worry and stress back to my wife so much so I had to drive home.
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We all have something to share.

[whited]

On the subject of taking photographs of someone who is sedated, some NHS Trusts use retopective patient consent. Where possible, the family are asked, however, the photograph is the property of the patient. The photograph will be locked away untill the patient is able to state that they wish to have it. If they refuse, it is kept safe for 12 months in case they change their mind. After 12 months the photograph is destroyed if left unclaimed.