Delirium, An Insight

Recently, I was asked to co-present a presentation for a Delirium study day, run by the Intensive Care Society

Within the presentation, I offered what I felt were useful insights and tips on how to support patients with Delirium, and I thought it might be useful to share them in a blog post.

AWARENESS:

Whilst in ICU, during my entire stay, I had no awareness of reality. The real world didn’t exist, I didn’t even know the real world didn’t exist. I have little or no recollection of what happened, who visited or even where I was. Instead, I was in my world of Delirium. No awareness of time, no awareness of surroundings, no awareness of reality. I found the below photo on my phone weeks after discharge from ICU. I don’t remember taking it but the date stamp indicates it was taken on what would’ve been one of my my last nights in ICU. This photo fascinates me as I can’t make the connection that it’s me! I don’t remember taking it, I don’t even remember having my phone. The wide eyes are a giveaway for me, as I often see this in the patients I volunteer with who are in or coming through Delirium.

For me, this photo sums up perfectly where my head must have been: Confusion, Terror, Fear, Horror, Anxiety.. the list is endless.

COMMUNICATION:

Whilst in ICU, I can’t tell you what the communication was like as I simply don’t remember. Any words or actions were translated into Delirium’ese and my brain turned it into something completely different.

I do have one vague glimpse of reality that I remember and know to be real as it ties in with an entry into my patient diary.

I was having the most awful night – anxiety, temperature spikes, trying to escape. I remember it being dark and hot, someone sat next to me and held my hand. I have an image of how they looked and sounded but I can’t tell you if that’s true or not. They had a calming voice, stroked my head and just kept speaking to me. I don’t know what they said, but I remember a wave of calm coming over me. I felt that someone was telling me I was safe, that It was ok to let go, to stop fighting.

I am proof that patients can hear through the Delirium and that communication matters. It’s so important to talk to patients who are experiencing delirium: reassurance, safety, calmness – all these things matter AND make a huge difference, believe me!

Please don’t ever think a patient is being intentionally difficult or that they can’t hear you – you WILL break through. In their head, they could be flying a plane, but you probably won’t know that. Instead, you can help to them feel safe, to feel grounded and to feel closer to reality.

PATIENT ASSESSMENTS:

In my more ‘alert’ moments, one of the things I used to fear the most were the ‘4AT and/or CAM-ICU tests. These tests are designed to assess alertness, attention etc. I remember the dread of being asked ‘what day is it’ or being asked to ‘squeeze my hand’!

It’s important to understand that I was still very much in ‘delirium land’ at this point, but I do remember certain thoughts and feelings.

Every time I was asked ‘Do you know where you are’, I would answer with a different hospital name. I was convinced I was in Treliske Hospital in Cornwall….when actually I was in Derriford in Devon! After a time, I began to notice the reactions on the faces of staff when I gave wrong or unusual answers. I then began to fear the tests. I remember an intense amount of pressure to get the answers right. If I got one wrong – What would it mean? I became scared to tell staff how I was feeling when they asked because I associated wrong answers feeling unwell with never going home, or even worse…death. This is something that has stayed with me, and to this day, this fear still impacts my daily life.

On reflection, the questions should never be scary. So for me, it’s about the approach we take – How we speak, the tone we use. Positivity and encouragement go a long way. Like doing a test, we should acknowledge wrong answers but focus on the right answers.

If we take away the fear, patients may engage more and not think the worst. Always remember – a patient with delirium will most likely not see or hear things in the same way as you!

MY REFLECTIONS AS A VOLUNTEER:

As a volunteer with patient experience of ICU, a long stay in hospital and rehabilitation, I have a unique perspective and skills set. I’m able to understand, empathise and see things differently to others. I’m able to build relationships with patients and their relatives and I can often visibly see the benefit they get from speaking with someone who has ‘been there and got the t-shirt’.

Although not clinically, I’m able to support staff with observations and feedback on patients in various stages of delirium. I can be used as a trusted person to support patients who might need a little help in seeing through the murk of delirium and critical illness.

In my volunteer role, and as a former patient, I’m able to reassure individuals, make them feel safe and tell them where they are. I might talk about the weather, or who is around them. We might talk about what they are seeing – not encouraging or humouring them, but to gain an understanding of where they are, to then support them and help them feel grounded.

For me, the importance is making the patient feel heard and seen. When volunteering, I work across various wards seeing step-down patients and I sometimes wince at the way patients are spoken to by staff. When someone comes into hospital, ‘we’ can often lose our identity – ‘we’ become our medical condition or bed number. Everything that we do in our lives is forgotten or not considered. Our routines, interests, jobs and hobbies…..all the things that make us tick, are left at the hospital entrance.

Patients are human, NOT a bed number.

WORTH THE EFFORT:

Many of the challenges I faced as a patient, particularly after ICU into Stepdown, were simple things that could have been easily facilitated.

Fresh air: For my 13 days in ICU, I know from my family that I didn’t leave the unit other than for scans. My first taste of fresh air was 5 weeks AFTER I originally came into hospital. I was taken outside by my physio team, on a cold, dark, December afternoon. Going through a set of automatic doors of the hospital was like going through an airlock. The cold air hit my face and to this day it is my favourite feeling. Being outside, seeing cars, people walking around…..I realised I was still part of the world. I realised I wasn’t imprisoned in a hospital, as that was how it felt. I was alive and I was very much part of the world. Fresh air can be incredibly powerful to a patient’s recovery journey and wellbeing and it’s easy to achieve. It is worth the effort.

Sleep: Anyone who has ever spent time in a hospital knows that sleep is impossible. Patients are required to rest and sleep to heal and recover……yet a hospital is the hardest place to do this! It is a very difficult environment in which to be calm and rested – machines, staff, tests….other patients! From my own thoughts, sleep patterns should be established as soon as is practical. Talk to the patient, find out their routines at home – what time they go to bed, what they do to unwind etc. Calming music via headphones, earplugs….lots of things can help. Working with their circadian rhythm, to implement good waking/sleep routines really benefits the patient. It is worth the effort.

Home routines: As with establishing bedtime routines, other daily routines can be established, within reason. As a volunteer, if I’m working with a patient who is struggling, one of the first things I like to ask is ‘What do you do at home’. Without thinking, we all have little habits. In the morning some like to get up and jump in the shower straight away, some like a cup of tea first, and some might do exercise…..throughout the day we all have small, repetitive habits. So I (and the team) try to replicate and bring these things into the patient's ‘hospital life’. Where practical, especially if you’re a long-stay patient, you want some home comforts around you. You need a routine. This is even more important when you step down to a ward. On my ward, 0730 the bay lights were switched on and the beds were prepped for changing. We had no choice but to be awake and out of bed. In the first few weeks, I REALLY struggled with this, especially at weekends. I also observed others who struggled with this, particularly older patients. It felt very ‘Victorian’, and although I appreciate jobs have to be done, is it not time we put the patient more at the centre of these little NHS nuances?

AND FINALLY…..SAY IT – SAY DELIRIUM!!!

I only learnt that I had Delirium months after I was discharged from my 3-month stay in hospital. Nobody told me OR my family about Delirium during my entire stay. More recently, I was admitted to ED with iGAS and severe Cellulitis. I could feel the Delirium creeping in. I knew exactly what it was, it was terrifying…..but the staff didn’t believe me: ‘You’re just confused’ they said, ‘you’re just seeing things’. One member of staff even suggested that Delirium doesn’t exist. I was too unwell to fight back; I felt strangely suffocated as though I had no voice, no right to an opinion. I was incredibly lucky to have a very good friend of mine (and a member of the rehab team) come to ED and support me. Without them, I’ve no doubt things would’ve got much much worse. But what did they do, that the ED staff didn’t? They LISTENED and made me feel heard.

We have to STOP being afraid of using the word Delirium. We HAVE to RECOGNISE Delirium. It isn’t scary, it isn’t stigmatizing…..it’s REAL! It’s not pleasantly confused, away with the fairies, or being a little odd……It’s REAL!

Delirium is real – it is what it is and we really need to start calling it by what it is…..

Patients need to know what it is. It’s not about scaring them, its about educating them. If they have a planned ICU stay, talk to them and their relatives before their admission so they can be prepared, IF they do experience delirium. If it’s unplanned and a patient isn’t able to communicate or understand, talk to the relatives. Allow them to help and support. They can be so valuable in the patient's journey. Had my family known about my Delirium, it would have DEFINITELY helped, particularly post-discharge.

The way we communicate can make or break the patient experience

www.fromdeliriumtoreality.com

#ICU #ICUDelirium #Delirium #CriticalCare #PatientExperienceAMERICAN DELIRIUM SOCIETY Intensive Care Society BACCN Healthcare Conferences UK Ltd Patient Safety Learning University Hospitals Plymouth NHS Trust