Delirium awareness is not just for hashtags, it’s for life

Dr Shibley Rahman is an academic physician interested mainly in dementia and frailty. He tweets at @dr_shibley

My most recent experience of delirium was truly terrifying, to the point that, as a care partner of a close relative with dementia experiencing delirium, I felt I needed counselling about this admission to a London teaching hospital.

I have now witnessed delirium ‘around the clock’ for half a month so far.

Delirium research is not taken as seriously as it should be.

Where for example is the research which explains the neural substrates of hypoactive and hyperactive delirium? How long do ‘sleep episodes’ last for? Is it a good idea to wake someone up while he is sleeping? Are there are any neuroprotective agents which prevent long term deterioration after delirium? How much of the delirium will the person experiencing it actually remember?

In a recent paper by Profs. John Young and Sharon Inouye, the following case scenario is presented:

“An elderly man is recovering from a heart attack and seems to want to lie in bed. He is polite when approached, but sleepy, and he doesn’t seem interested in eating or drinking. Sometimes his speech is incoherent and he doesn’t seem to follow what is said to him.”

This was, in fact, exactly my relative’s picture when she was discharged ‘medically fit for discharge’ before a virtually immediate re-admission back home within a few days. I live with her, and she was unmanageable at home.

The diagnosis even then was hypoactive delirium, although the picture became more mixed in the subsequent few days. My relative was admitted, and thought to have a respiratory tract infection, constipation and dehydration. She also lives with frailty and dementia.

It is claimed that, ‘for the family and health-care staff, clear communication, education, and emotional support are vital components to assist with decision making and direct the treatment care plan’,  but I felt all three were lacking in the 19-day re-admission. Nobody told me about what to expect in the delirium, or offered me any support for my distress.

If you read the page on “Dementia UK” website about delirium, you are offered the following advice:

  1. “keep calm and reassure the person”

A different HCA in the bay every day and every night is not reassuring.

  1. “observe the person to see if they are in any pain”

The paracetamol was written up prn. My relative could not remember if she was in pain, and none of the nursing staff asked me as her full-time carer if she was in pain.

  1. “avoid too much stimulation”

the ward had a noisy bleeping air mattress which was bleeping all the time, and at night the lights were often bright.

  1. “if possible, offer them drinks to maintain hydration”

this simply didn’t happen

I can frankly say that the GMC guidance on communication (points 31-34, “Communicate effectively” in “Duties of a Doctor”) was flatly ignored in my relative’s admission:

John’s Campaign, for me, has to be more than allowing care partners to sit by patients’ beds for longer than a few hours. To make delirium management work, care partners, where available, should be fully involved. I was not asked once by clinician how my relative’s function had dropped off a cliff, nor indeed what she was capable of doing prior to admission.

Of course, I agree with letting the treating physicians to ‘get on with it’, but it was staggering how none of the rationalisation of the medications was ever communicated with me (including the discontinuation of the cholinesterase inhibitor). The cholinergic system has a key role in cognition and attention, and it is not surprising, therefore, that there is some evidence to support a role for cholinergic deficiency in delirium.

Bidzan and Bidzan (2012) have described a 62-year-old female diagnosed with Alzheimer’s disease, who on sudden discontinuation of donepezil experienced a worsening of the dementia symptoms, culminating in delirium. I would also find lorazepam and midazolam prescribed to my relative, without any communication with us, when it is believed by some that these can actively worsen delirium.

Many of the excellent points from ‘Concise guidance to good practice’ from the Royal College of Physicians of London on delirium (2006) were not followed in the course of my relative’s hospital admission.

I feel that non-pharmacological strategies are the first-line treatments for all patients with delirium, and yet as a care partner I was offered absolutely no help with this. I was not encouraged over any reorientation and behavioural intervention, or advised on pretty standard advice such as using clear instructions and make frequent eye contact.

My relative’s hospital bed itself had a huge bed rail. But it is advised that, “physical restraints should be avoided because they lead to decreased mobility, increased agitation, greater risk of injury, and prolongation of delirium.”

I feel much more has to be done about delirium in acute hospitals?

1 thought on “Delirium awareness is not just for hashtags, it’s for life

  1. You are not alone.I experienced this level of care.I was waving at staff saying I was
    fine.l’d had no oral fluids for >24 hours .When my carer(wife) asked to speak to
    a senior Doctor she was told they were busy with poorly patients!.Finally with some IV fluids my mental state improved for my wife and I to leave with only a bed sore
    after 5 days of asking for a ripple mattress.
    It is difficult to get good ‘medicine’never mind the care.It seems to need sharp elbows not leaving your relatives side and identifying the really good staff.

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