Following on from my recent post… I did mention it was a big topic, and it plays a huge role in my life.
I touched on the fact that one must have the capacity to give consent to a given situation. If you have ever seen the brilliance that is the “cup of tea” video, you will remember that if someone is unconscious, they cannot give consent… hopefully you get the drift. Today’s topic, once again, is not about sex but the principle applies.
Youngest (I have always referred to him as Little, but as a teenager I feel the term no longer truly applies – regardless of his diminutive size!) has a severe feeding difficulty. This is not to be confused with an eating disorder.
All his life, he has found eating to be extremely difficult, and we have never properly known why. Some facts are clear:
- He never had a rooting reflex (the snuffling around that an infant does to find a nipple – any human breast will do for the reflex to work).
- He had symptoms of reflux, but no formal diagnosis.
- He showed signs of slow motility (the time it takes for food to make its way through the body).
- He vomited. All. The. Time. Sooo much Volume of Vomit. Awful stuff.
- As he got older and we gave him real food, the vomit slowed, but he often feels sick, very soon after the start of a meal.
- He is rarely hungry (this used to make surgery days much easier, as the fasting was a walk in the park for him).
This feeding difficulty was so severe that at 8 months old, he had to have a naso-gastric tube inserted to feed him. Why?
Because he was refusing consent to eat.
Nobody could get a bottle, spoon, droplet near his mouth without him arching his back, screaming and spitting anything out of his mouth immediately. As an infant, he was using all the tools at his disposal to say NO.
He was 8 months old. He did not have the capacity to understand why we were insisting on feeding him, and he certainly did not have the capacity to understand the consequences of not eating. So we (parents, doctors) decided that in his best interests, he would need a feeding tube.
At the time, it was an easy decision. But it did not end his pain, or the vomiting. The only thing that ended were the interminable fights with a wriggling, weakening infant. It took him longer to realise that the syringe of formula (I refuse and will always refuse to call it “milk”… see any of my posts on blended diet) was responsible for pain.
Youngest has been tube fed for fifteen years. At the age of 16 months, the NG tube was switched to a gastrostomy – a more permanent feeding tube whereby a hole is made from the stomach to the skin of the abdomen, and a silicon tube is placed there for feeding.
Since he has been old enough to communicate, he has made it absolutely clear that he hates being tube fed. He also hates eating. We have worked with tube weaning teams, we have worked with speech therapists and play therapists. For my money, he simply lacked an instinct to eat. Whatever the reason, eating has always been difficult but we have been extremely lucky to have the tube in order to continue keeping him alive.
There have been many occasions when he shouted his protest, when he withdrew his consent. But he was and is a child, and in his best interests, we overcame the shouts and there were times (rare, but still) when he was fed against his wishes.
Force feeding is a very very uncomfortable issue. We usually hear about it with regards to protesters or prisoners. Famously the Suffragettes went on hunger strike, and many of them were force fed using tubes down the throat.
[Little aside. I considered adding a picture depicting such force feeding. Decided against it… it makes me ill.]
More recently, some prisoners have used hunger strike in protest, and the ethics of force feeding have been debated. From my little research, there are very few instances where force feeding is permitted. Certain extreme forms of anorexia come into this, but there is no clear cut view, not least because feeding in this way can be extremely dangerous. Really, the only time it is considered is if the person in question has been shown to lack mental capacity (remember I mentioned this last time?).
In fact, force feeding is really a kind of assault, and should be considered very, very carefully.
And now we come to the crux of my thinkings… If force feeding, imposing food on my sixteen year old, is assault…
Why is it acceptable to impose food on my fifteen year old without his consent?
At what age do we consider that an act that will be felt as an assault is acceptable “because it is in the best interests” and “because he is a child”.
Because here is a nugget in the world of consent:
Someone who has the mental capacity to give consent, also has the mental capacity to refuse it. And that is okay.
We are allowed to make poor decisions. In fact, much of our personal growth comes from making poor decisions and experiencing the consequences.
Of course, most of us make poor decisions that have few long-lasting consequences, or the consequences are not terrible.
Take a tattoo… it is a permanent act, that a good few people eventually regret. For the most part, one’s life and health are not threatened by having a tattoo, and for the most part, the images are inoffensive enough to be an amusing anecdote.
What if the tattoo is a symbol of an extremist movement that you flirted with as a youngster. When you are forty, with young children and you have a swastika tattooed across your shoulder, what are the consequences?
So at eighteen, should the tattoo artist have refused? No, because you, an adult, gave informed consent. You, an adult, made a poor decision. And you, an adult, had to learn to live with the consequences. This is life.
If at forty you are diagnosed with cancer and make an informed choice to refuse treatment, many will think you mad, but you are entitled to that decision. And we may not like it, but we tend to accept it.
When it comes to more vulnerable people, however, we are not so willing to relinquish control. We are not so willing to allow them their independence, their right to consent, their humanity. Uncomfortable thought…
It has become quite clear to me that I must now consider consent almost daily when it comes to Youngest. He has to step up and make responsible choices (the like of which few young people of his age are required to do), because he does have the capacity to consent in most of these cases, and therefore has the right to do so.
In practical terms, this means a couple of things.
First: I will never “plug” in his feeding tube overnight without him consenting to it beforehand. I made that promise a few weeks ago and firmly believe it to be the right decision.
Second: we have to talk. More. A lot. Help him understand how important it is to eat. Help him understand that consequences happen later. Help him understand each upcoming surgery or medical treatment that might hurt, and why we feel they are necessary. Because gone are the days when he submits to our decision.
Now he gets to consent. And that, my dears, is hard work. Hard work, but oh so worthwhile. To be heard, to be seen, to have choice. All these things are valuable and we need to find a way to treat children with that same value, before they turn sixteen.
Maybe we need to think of consent as the starting point, and manage that pesky “in the best interests of the child” (which so often means, against his wishes) more carefully.
It’s a brave new world, Grown-Ups, if we are to treat Children as Humans in the way we expect to be treated… Have a think upon that…