Informed consent is mainly associated with medical science and medical interventions. But as an aside, I would argue that informed consent is also relevant when it comes to political and societal governance.
Informed consent is defined as:
consent given by a person who has a clear appreciation and understanding of the facts, implications, and future consequences of an action.
I want to ask: Who is informed consent for when it comes to medical procedures?
Is informed consent for the person receiving medical treatment or is it for the practitioners?
Is informed consent useful exactly because we make a personal choice, take a leap of faith and therefore experience useful things like hope, trust and placebo effects?
Is informed consent about the medical profession’s need to be safe from prosecution in case of injury and complications?
Is it about genuine shared decision making and facing the consequences together as patient and practitioner?
I am pretty bright – when I don’t have brain fog – and I do not believe there is a situation where I would have a clear appreciation and understanding of all those things… Maybe it is just my personality, or this weird upside-down-funnel-thinking of mine, but here is my take on this:
Let’s take a concrete example.
When I was 18 I broke my fibula bone just above my ankle. At least that is how I remember it. It was not a bad break in itself, I think, but the damage to my soft tissue was terrible. The swelling and bruising was so bad I had to wait for a week before x-rays could be taken, damage assessed and treatment possibilities considered.
So the x-rays got taken and a doctor came to talk to me. He told me the damage to my soft tissue was so severe that there was a danger of me not gaining full mobility again and that he would offer me an operation where a clamp would be put into the bone to keep it in place and help it heal correctly.
I was told that the tearing of the soft tissue was so bad that there was no way of knowing how it would heal. Whether there would be permanent nerve and muscle damage and whether the connective tissue such as tendons would function properly after healing.
The only facts I was presented with were those. The soft tissue damage is extensive. I was offered an operation and given an explanation of the procedure they were hoping to perform.
Now I don’t know if a different doctor or a different kind of practitioner would have interpreted the x-rays in a different way and presented the facts they believed to have found in a different way.
Facts, unfortunately, are often not straightforward, but open to subjective perception and interpretation. And when passing on facts, language plays a massive part. And all of this play in to how we receive those facts and interpret them ourselves…
Implications and Future consequences
The implications were that considering the damage I would not be able to walk again. This might not have been exactly what was said, but that was what I heard. Whether I had the operation or not, it was not looking very promising.
When we are presented with facts, implications and future consequences I think the personality and attitudes of professionals has a big impact on the whole process.
Who knows if a different doctor might have come up with a different way of giving my leg it’s best chance of healing.
I once had a dentist who invented a device specifically for me to move some of my teeth after having had some pulled out and extensive root canal work done on several teeth. I was young and she was mortified at the consequences of what my previous dentist had done – or failed to do – and she was creative and took an unusually person-centered approach to her work. She also seemed determined to restore my faith in dentists. It was a fascinating experience. I can’t remember her face but I remember her presence, her care, her frustration on my behalf and her embarrassment on behalf of her profession. I remember her enthusiasm. She drew the device she designed for me before getting it manufactured and explained her thinking to me. I remember having to go see her regularly to have it adjusted and the whole thing probably took more than a year. I have had pretty good dentists since her, but no one quite so passionate about doing their absolute best for me.
Imagine if the doctor in the hospital had approached me and my injury like that.
Information and context
So the information I was given was pretty scary. I was 18 years old and still had hopes of pursuing becoming a dance or performance artist. Being told I might not gain full mobility, even with an operation, was terrifying.
The doctor and nurse who came to give me this information and talk me through options were both very serious, detached and standing a fair bit away from the bed I was lying in. I was in a strange dissociated state of mind from the uncertainty and the waiting, Being carted around in wheelchairs and beds by strangers in a strange environment of hospital corridors and various rooms with varying levels of privacy.
And I was alone. There was no one with me to take in what I was being told. No one to help me ask questions, to talk things through with or support me to make decisions.
I was 18 so I was an adult and considered able to legally give my consent to the medical interventions offered to me.
I wonder if I called my mum to talk it through with her. I am not sure because I remember this sense of urgency. Doctors time is precious and hospital admissions and operations are costly.
I had to make the decision then and there. And I wasn’t even able to take in the information I was given, much less appreciate any possible consequences of the only two options I was given.
I wasn’t told about other possible ways forward… It was operation or no operation.
And the informed consent nightmare didn’t stop there. I also had to choose between regional and general anaesthesia, which again is a really complicated thing to gain a ‘clear appreciation and understanding’ of…
I went for the regional based solely on my need for being awake during the operation and while being in the care of total strangers. It has nothing to do with an weighing up of facts around risks between the two options.
How we understand and process information given to us, cannot be seen as separate from the context and the power dynamics of the situation we are in.
A leap of faith
I did not give informed consent.
Firstly I don’t think facts, implications or future consequences are something as real and concrete as we would like it to be. Secondly, I was in no state to take in and carefully consider the information I was given and request more information and maybe more options. Neither did I have the time or support to do so.
I took a leap of faith.
The doctor sounded very much like an operation was his preference – even though he did his best make it clear he couldn’t recommend anything as the decision had to be mine. So I put my trust in the non-verbal communication I was picking up on and also I thought that if I had the operation, then at least I had actively tried and not just passively accepted defeat and a life of limited mobility…
I had to trust in something, I had to hope for something.
Luckily it all went well.
Giving informed consent to medical procedures
My personal experience of engaging with the medical profession and having to make decision about medical interventions, is, that I rely on flimsy things like hope, irrational things like gut feelings and that I am driven by primal stuff like fear.
I have consented to operations 4 times in 20 years. Sometimes it was an urgent decision I had to make and sometimes I had time and support to look into the information and consider my options. But the overall feeling in all instances was not one of knowing solid facts, having a clear sense of implications and a good understanding of future consequences.
It was one of not really knowing what the best way forward would be but deciding to believe in something.
I actually take issue with the whole idea of information as basis for consent. I think it is an illusion.
We live in the age of information. Or maybe we live in the post-information age. As our access to information has expanded through internet and other technological and digital developments, so has the amount of information available.
For a long time ‘valid information’ was decided by an elite and then distributed through books, newspapers and in other written forms. Later it was distributed through radio, television and recordings. But with new technology, information has been democratised, it is created and changed by everyone who engages with it. There is no monopoly on information though national and privatised media outlet as well as government and elite educational institutions are trying hard to hold on to what used to be theirs to control without interference or being challenged.
Information may have once been straight forward and reliable but today it is complex and biased.
I think this is extremely important to remember when we go on the internet to search for information to help us make decision. Or when we talk to other people regardless of their profession. We can find any information to support anything we want to do out there. Or the opposite. There are myriads of agendas – personal and collective, conscious and unconscious – behind the information we have access to.
Revisiting future consequences
The idea that we can consent to possible future consequences is a strange one. How can we agree to something we have not yet had an experience of and don’t know whether it will happen and how we will feel about them and respond to them if they do.
My partner generally has a lot more faith than me that things will work out one way or another. He doesn’t really spend much time considering future possible scenarios. I think he doesn’t see the point of thinking of things that hasn’t happened and may never happen.
We are all different and think in different ways about things but we are expected to think and understand things in a certain way within the processes of giving consent.
I didn’t understand the possible future consequences of having the operation on my leg. I still don’t know what they could have been if I had made different choices along the way.
The operation went okay. It took a couple of months before they took the cask of. And then I was sent home and told to move it and that it was okay to walk on it.
But I couldn’t move it. My entire ankle had completely stiffened up and was still very sore if I put any weight on it. My calf muscles had wasted away and my leg in general was not in a great state. After some time where I didn’t know what to do and being scared of doing something wrong I eventually contacted my local doctor. He didn’t know much about recovery from severe injury but he gave me a couple of exercises and a supportive cast that he told me I could wear when I needed but encouraged me to slowly stop using.
That was it.
I had to figure it out for myself and slowly, slowly I regained mobility and strength in the lower leg, ankle and foot. But I don’t know if I would have persevered if I had not been used to working through pain and stiffness as a dancer.
That ankle is okay still. It is more stable than the other which is nice but also means I am quite asymmetrical in the way I stand on my feet, which then affects my hips and back. Because I didn’t have any post injury treatment, that lower leg and ankle is riddled with scar tissue, the circulation in not as good as in my other leg and the ankle is constantly slightly swollen.
Future consequences can not be predicted and therefore I don’t see the point of pretending we can consent to them. The future unfolds as a mixture of things within and beyond our control.