The inside of brain injury – complex decision-making and the Mental Capacity Act.
The inside of brain injury – complex decision-making and the Mental Capacity Act.
How can health professionals provide the best help when someone's mental capacity to make complex decisions is in question after brain injury?
Krysalis blogger, brain injury survivor, and charity founder Anne Ricketts delves into this delicate issue in the light of her own experience of traumatic brain injury (TBI) and in the wake of a UK conference in memory of neuropsychologist and Mental Capacity Act (MCA) expert, Dr Melanie George [1]...
On the way back from the moon, NASA astronaut Dr Edger Mitchel V experienced a change in consciousness. He said:
"I theorise that there is a spectrum of consciousness available to human beings. At one end is material consciousness and at the other end is what we call 'field' consciousness, where a person is at one with the universe, perceiving the universe.
By looking at our planet on the way back, I saw or felt a field consciousness state. 
I theorise that the material consciousness state should also be considered a spectrum.
We are aware that consciousness expands from birth and that there are known stages of growth.
Although it isn't a 'given,' we have developed expectations of maturity and what this means.
In general, we all recognise learning disabilities and the impact that mental health can have on behaviour and intellectual and emotional growth.
In our middling years, we should expect to be able to move past unity consciousness as we continue to develop wisdom, and, indeed, many people search for the route towards the field consciousness mentioned by Dr Mitchel.
However, the last thing we expect is that an adult would regress spontaneously to the early year's end of the material spectrum.
I believe this is what happens when people lose self-awareness following a brain injury.
What is 'loss of self-awareness'?
From an 'internal' or experiential perspective, loss of self-awareness falls into at least three categories:
- Loss of self-identity
- Loss of insight
- Loss of self-awareness
Loss of Self-identity
While some people lose all knowledge of who they are following a brain injury, some retain self-awareness and intact memories of what they were previously doing, their goals and dreams, and what they expected of life.
They remember and are clear about how they once fitted into things – including relationships.
Changes in executive skills and cognitive function can create a vortex of utter confusion and despair.
While the inflammatory cascade leads to changes that may manifest as depression and anxiety, those aware of their losses also struggle with the psychological blow to their self-esteem.
The more someone retains their awareness, the more extreme their psychological, emotional, and spiritual pain is in the early stages.
Reaching acceptance with a dysfunctional brain is so tough that many people spend years scrutinising the details to make sense of them.
By comparison, those who lose all awareness enter a state of blissful ignorance that can last for many years. The eventual heart-based pain comes sharp and hard when the blissful bubble bursts.
The day you finally realise the 'true you' had always been absent from every thought, moment, action, and reaction, is the day that your heart falls through your feet and right through the empty, hollow centre of your world.
It is easy to be lulled into concluding the walking wounded based on personal experience and judgement of the everyday world.
However, a recent study of trends in mild traumatic brain injury (TBI) [2] has shown that "even mild TBI can have significant, life-altering consequences" and "significant functional limitations."
Another study looking at outcomes after complicated and uncomplicated mild TBI warns that, even for those diagnosed with mild TBI, "patients, clinicians, researchers, and decision-makers in health care should take account of the short and long-term impact on the outcome." [3]
Loss of Insight
Loss of insight is prevalent in many people after brain injury and can show in many different ways, most noticeably when people cannot 'self-feedback' or process information about themselves, their actions, communication, and behaviour.
For example, if you explain something and wait for the lightbulb moment, you may be waiting a long time.
Lack of insight means individuals may know something intellectually, but brain injury prevents emergent awareness, and realisation fails.
None of us can relate to 'facts,' but we can relate to information when we understand its relevance and relationship to who we are and our lives.
Because intellectual awareness and knowledge are present, it is easy to assume insight. Again, a poor sense of the complexity of brain injury outcomes quickly leads to incomplete or false understanding.
Realisation and emergent awareness do come, but it takes time. Sometimes it takes many years.
When lack of insight isn't understood, or people don't know about it, the challenges it can raise can quickly disseminate – turning ripples into tidal waves.
People living with a brain injury can struggle with understanding the world around them and where they fit in.
They can easily misinterpret incoming information about themselves and can have difficulty understanding how they relate to others, facts, and data.
Loss of insight happens when someone is unaware of the cognitive, emotional, and behavioural changes caused by their brain injury.
The term is used interchangeably with lack of self-awareness; however, while disruptions to the executive functions cause both states, they are experienced differently.
Loss of Self-Awareness
Loss of self-awareness includes the spectrum of deficits seen with loss of insight but with further complications.
With a loss of self-awareness, there is also a loss of experiential memories, personal beliefs, and understanding of a sense of self – who they are. People no longer have any idea how to describe themselves.
Whereas loss of insight causes people to struggle with self-observation and reflection on their thoughts and actions after an event, loss of self-awareness also causes them to sense a 'loss of self,' which can be frightening and disturbing.
When a loss of insight and self-awareness happen together, it can be challenging to help people understand what is happening to them.
Speaking factually in medical terms or offering feedback in personal terms can often make things worse.
It is better to lead people towards consideration about themselves to help them reflect on or notice what is missing and give them time to figure things out independently.
People may be desperate for help but don't know what type of advice to ask for because of a lack of understanding about their confusion.
They may have no realisation that anything is wrong or may blame others for upsets and arguments or a lack of knowledge.
While some people are in psychological denial when trying to come to terms with all the changes, this is not a determining factor of lack of insight. However, if it co-exists with a loss of self-awareness, individuals may be unaware of this.
In all cases, it will feel to people as though they are doing the 'right' things in their usual way. They are bewildered when things keep going wrong!
For further information about loss of self-awareness after brain injury, please see here: [4]
What happened to me?
On 23 July 2000, I flew upwards from my saddle from an 18.2 hand horse (over six feet at the withers). Falling as straight as an arrow, I came down directly on the top of my head.
The changes in my perception of the world around me were immediate. It was as though my consciousness, concertinaed by the impact, had wiped away all sense and sensibility.
My dynamic brain had suffered such force as to be rendered childlike. My brain could no longer discern object difference – everything was a single picture.
I didn't know what to do without instructions, and I was robotic rather than cognisant when they came. I followed commands quite literally; my inner power to think for and help myself detonated beyond recognisability.
Someone loaded me onto the horse and took me back to the stables. Someone else put me in my car, put the key in the ignition and started the engine. Somehow, I managed to get it into first gear, and that gear took me just over 11 miles home.
I have no idea how long it took, but I know it should have taken around 20 minutes.
The car kangarooed for the entire journey, and I stuck to the centre of the roads, including on the dual carriageway, which I joined with my eyes closed. I couldn't judge speed or distance.
Without any degree or inkling of sense or danger, my childish response was like climbing on a rollercoaster that you know you aren't going to like but have to get on because of bravado.
Two days before this, I had been managing and training international and UK sales teams for a technology company.
A moment before I fell on my head, the beautiful brain that allowed me to earn up to £1,500 a day freelancing had released the pressures of work and replaced this with absolute relaxation and joy.
You always have to concentrate every single second when riding any horse, but it is a distractive focus which allows you to let go.
The catastrophic hiccup
From the moment I arrived home to this very moment writing this, my life has consisted of one catastrophe after another. Herein is another spectrum, going from the full-on force at the beginning to, nowadays, primarily becalmed.
My life became a parody of errors – not only mine, but almost everyone who came into contact with me got it wrong!
I was in and out of consciousness for weeks. On the day of my injury, I was left alone in the waiting area of the A&E department, unconscious for four hours.
Admitted by ambulance the following day, my days on a ward were uninterrupted by the staff who were "too busy to do any 'obs'."
The exception was when I thought I had fallen asleep in someone else's bed and tried to make a rapid exit each time I regained consciousness. Forcibly dragged back to the bed, totally bewildered each time, my arms became covered in bruises.
The triage nurse, assessing me against the Glasgow Coma Scale, wrote on my notes that I was deaf. I couldn't process or understand anything she was asking me.
Someone sent me home with a slip of paper; written on this were the words, 'severe traumatic brain injury.' These words meant nothing to me. I didn't have any relationship with them for over six years.
For the next four years, I was continually in and out of the doctor's surgery. I would report that I had spilt the milk, sliced my fingers instead of the bread or other foods (in lines up to my hands as if cutting more than a slice), and attended with many burns and other injuries.
I would also tell my doctor that I couldn't read and a whole barrage of other oddities because my brain neither understood nor could it find the language.
I was a child. My conscious understanding of the world was like a three or four-year-old child. I couldn't help anyone help me.
I walked, I talked. I lived alone and then with my 15-year-old daughter, who just wanted to love her mum. I felt nothing for her, but I knew I should do so somewhere inside.
Love requires more than reliance or dependence; it needs the person to be cognisant and appropriate somewhere on at least the material consciousness spectrum.
Nothing can prepare you for this kind of brain injury. Anything you may have known would have ended up like everything else: washed from the face of the earth like a wet cloth taken to chalk on a blackboard.
Even with my cognitive reserve, I had no choice about anything. Life happened to me; I was incapable of will or understanding.
It isn't that I could no longer 'hear' my inner voice – it simply didn't exist anymore.
My brain couldn't monitor anything, and in this regard, it was just like hiccoughing from one moment to the next. I was a needle stuck in a scratch, and it took external momentum to 'shove' me to the next scratch in the groove.
The only thing that I did know was that my brain was 'different.'
My relationship with this information was one of amusement. It takes cognitive capacity to be curious, and I didn't regain this for many years. Amusement at the weirdness was all I could muster.
Referral to a neuropsychologist took five years, and from there, I saw an occupational therapist (OT) and a speech and language, therapist. The hospital lost my CT scan results, and the consultant said they wouldn't matter anyway as I was alive!
From the lived experience, I am not sure that the lack of curiosity about such profound changes in an individual is significant. This situation stands little room for enabling improvement.
I think it is more the case that no one, apart from the specialised professionals, seems to know enough to make them care.
They must still retain enough curiosity to question, probe and decipher those things that individuals find most troubling.
This puzzle, coupled with a severe shortage of professionals who genuinely give their hearts and souls to their work, adds to the brutal nature and consequences of living with a brain injury.
It isn't only we who are a danger to ourselves – the lack of services at least equals the peril we are in when left to our own devices.
Neuropsychological tests don't even begin to scratch the surface when it comes to 'measuring' changes in your capacity to be your human self. They don't reflect what you can or can't do within the background of everyday living.
Assessments need to be 'real,' and the scope of impairment measurement needs to broaden.
Coming next…
I am not sure if it is possible to truly understand how desperate someone becomes when they have lost their connection to their soul. There is no thinking; there is no dreaming. There is no feeling in your thoughts because they are too brief to feel.
Anne continues her MCA exploration in Part 2 of 'The inside of brain injury – decision making and the Mental Capacity Act' coming soon…
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Further reading
Krysalis practice resource: 'Mental Capacity Assessment for Everyday Decisions.'
How neuro OTs help with mental capacity in everyday decision-making after brain injury
References
[1] Melanie George Memorial Conference
[2] Krueger, Evan M et al. 'Current Trends in Mild Traumatic Brain Injury.' Cureus, October 2021
[4] Loss of Self Awareness - Global Brain Injury Awareness (globalbia.org)