Caroline Farrow · @CF_Farrow
17th Apr 2018 from TwitLonger
Alfie Evans and Dignity
Many people over the past week have tweeted me with sentiments about baby Alfie Evans and dignity.
I want to make a basic point about what dignity is, and what it is not.
As a Catholic Christian, I believe that dignity is something we all possess by virtue of our humanity. We were made in the image and likeness of God.
If you do not believe in God, then the dictionary definition of dignity means being worthy of respect or honour.
The life of baby Alfie Evans is no less deserving of respect or honour because of his need for intensive medical assistance in order to help him survive.
Undignified is something which is applied to behaviour, whether that's people engaging in shouting matches on the streets, or falling out of a taxi blind drunk. When someone is referred to as 'dignified' it means 'having or showing a composed manner that is worthy of respect'.
Using the term dignity to refer to the condition of Alfie Evans, is completely misguided. When people talk about his dignity they are projecting their own feelings of both pity and horror at Alfie's condition. They would not like either themselves or their relatives to be in that condition and that is completely their prerogative.
We should not however, allow our own personal feelings to intrude on the matter. It should not matter what you, or I, or anyone thinks ought to happen to Alfie, it ought to be entirely down to his parents. They are his loving mum and dad, who want to act in his best interests.
To argue that it is in Alfie's best interests to die, is both obscene and absurd. Alfie is patently not dying and for a child who has been on life support for the best part of 15 months, he is in a remarkably good condition, which is no small part thanks to the vigilance of his parents and their team.
There have been a number of issues that Alfie's parents have had with his care - given the heightened emotions surrounding Alder Hey, it's best not to mention them at this time, however the various concerns have been well documented by his team and indeed Steven Wolfe MEP has expressed alarm.
I will post a couple of articles to the bottom of this twit longer which contain further reading about the treatment Alfie's parents want for him (a tracheostomy and PEG feeding tube) but it needs to be remembered that the Bambi Jesu, where Tom and Kate want him to go, is miles ahead of the UK, with respect to care of these severely disabled children. The Bambino is sending children home who are as disabled as Alfie, with trachy and Peg feeding and they have limited life expectancy. This is something that the parents accept, they do not expect a cure, but they want to make the decision about how Alfie is cared for in his remaining time. That is their prerogative and right as his parents.
Alder Hey wish to bring about Alfie's death by removing his ventilator meaning that he will not have the strength and energy to breath unassisted after being dependent on it for such a long time (Though he has been taken off and put back on it on 3 separate occasions when he recovered). It therefore seems astonishing that they are expressing concern that he may die during transportation, even though the risks of this are small. The suffering would be exactly the same as were he to have his ventilation removed and indeed, if Alfie does manage to breath unassisted after his support is removed, the hospital will then be forced to give him morphine to keep him comfortable which will in fact be euthanasia.
Alfie doesn't need a guardian or the state to decide whether it's in best interests to live or die. His parents, who know him best, are his voice and want him to be given a chance at life, along with the opportunity for therapy and treatment should some become available. What they are asking for is not unreasonable and will not cost the NHS a penny. So why are the authorities at Alder Hey, fighting them every step of the way?
The judges have said that Alfie is not in any pain or suffering. So why does his life have to end and why are his parents deemed incapable of judging what is best for him, because they desperately want him to live?
https://www.ncbi.nlm.nih.gov/pubmed/11982843
http://pediatrics.aappublications.org/content/133/Supplement_1/S44