By brighteningminds, Sep 13 2016 07:35PM
I’ve started running. (I’ll allow a moment for the laughter to subside…)
I’ve got to 3 weeks (8 runs) in and my left knee has stopped participating. Every time I move it it shouts at me, and it has no further plans to participate until I develop some supportive muscles around it.
In truth the pain started at the end of week 2 when I was 6 runs in. My mum said ‘Stop running Clare, look after that knee. Don’t put too much pressure on it.’ I thought to myself ‘I’m 30-bloody-6, I’ll run if I want to.’
Should I have listened to my mother? Perhaps…
Why didn’t I? Because I’m stubborn, because I’m 36 and because I didn’t have to! I have no medical conditions that affect my understanding. I can retain, use and weigh information given to me and I can make my own decisions based on this information. I have the capacity to make decisions about my life. Thank goodness for that!
A few recent events have made me think about how we view capacity, what we understand it to mean, and how difficult it can be sometimes to allow people to make their own decisions when we feel that we know best!
Recently someone I know was admitted to hospital following what some would say was a series of unwise decisions. At the point of admission he was acutely unwell, but as memory tests and questioning demonstrated he nonetheless had good understanding of the reasons for admission, the care required to aid recovery, and could consent to the care offered by the medical team.
Over the next few days my friend’s family and close friends came to visit, all very concerned and all with their own opinions on his situation and events leading up to his admission.
I find it incredible how rapidly situations can change when someone needs some care. From being at home making day to day decisions to being in a care setting with someone deciding what is best for you can happen extremely quickly. One day I was talking to my friend, asking what the plan was for his hospital admission. He didn’t know further than the next intervention. Talking further it appears that this wasn’t due to the lack of a plan, but because the Doctors had been consulting with his family rather than with him. He was only hearing the parts they chose to discuss with him. Additionally, when an intervention was required while visitors were present, the hospital staff would explain what they needed to do and why regardless of who was present at the bedside.
‘Why didn’t he challenge them?’ you might be thinking. Well he felt too exhausted to start challenging people; it was enough to get through each day and to try and recover without arguing about who should be privy to what information and who should be making what decision. He wasn’t happy about what was happening but as he explained it was one of those ‘choose your battles’ moments.
Of course there’s nothing to say that his family were making decisions that he wouldn’t have agreed with or made himself; they felt that they were acting in his best interests and doing what was right by him. The point is that if you are capable of making a decision about your life, treatment or future then you are entitled to make it. Just as my mum gave me an opinion and I chose to ignore it, my friend should have been given the full information about his condition and allowed to choose the plan for his treatment.
What is it that makes us think it is ok to make decisions for another person then? As parents it’s always going to be a challenge not to jump in and offer an opinion or make a decision on your child’s behalf no matter their age; after all you did have a legal responsibility to do that for the first 16 years of their life and old habits die hard! This is an important point for health professionals to consider when approaching consent and capacity. Our parents want the best for us, but their best is not necessarily our best, and we don’t always make the same decisions that our parents would make for us. Therefore health professionals must be absolutely clear that they have our consent to disclose information to our nearest and dearest. If there is a question around capacity to give consent a full capacity assessment must be undertaken and the principles of the Mental Capacity Act (2005) adhered to.
Hearing about my friend’s experience of being a patient and his feelings of disempowerment around the plan for his treatment made me concerned for people who have difficulty with independent decision making in certain areas. We make hundreds of decisions every day, from what to have for breakfast or how to spend the evening, through to larger decisions like where we want to live or which job to apply for. Not having the capacity to make some of the larger decisions does not automatically mean an inability to make any decisions. Thinking about the impact for my friend, if he is not party to the discussions around his treatment then isn’t there a risk that he will be removed from his own recovery?
I urge you to think about some of the decisions you make each day and about how it has made you feel when someone offered an opinion on one of your decisions that you perhaps didn’t want to hear. Imagine how it would feel if their opinion became your reality. Now think of how wonderful it is to be human, to be an independent thinker, to have the right to make your own decisions; and where you can make every effort humanly possible to support other people in exercising their right to make their own decisions.