Long read

In  Holland euthanasia is taken very seriously, especially for newborns. What this means is that there are constant official investigations in the form of ethics committees looking into aspects of euthanasia in order to define protocol. As soon as protocols are established we can certainly rest easy, detach ourselves or at least distance ourselves from self-torment and proceed to act according to protocol. 

Issues that are discussed for example are the ethical differences between "ending a life" and (apparently preferred by doctors), "accompanied death". Legally there is no difference here, either necessary treatment is halted or material is introduced into the child which causes them to die. The difference in inference for a doctor's conscience is that with "accompanied death", the child was going to die anyway (Singer! Where are you!?). Again, legally as it stands, there is no difference. 

They discuss how euthanasia should only be performed if both the parents and the physician come to the conclusion that there is no option that would allow quality of life, irregardless of the length of time remaining for that life.  Then they state that still, other options need to be looked at and proceed to give the option of sedation in the case of a child heading towards death, "in any case". They also mention, almost as an aside, that with adults this is problematic because the sedation may conflict with that patients' conscious intent "whereas a newborn has not yet developed a conscious identity and therefore no such conflict exists". 

That last sentence polarizes the issue very nicely, from henceforth you will either be a person who agrees with the above statement and thus have no trouble using sedation to ease the suffering and most likely but not necessarily accelerate the child's end or you become a person who stands by the principle that all life is innately valuable and should certainly not be pushed into an accelerated demise.

This sentence then succeeds in sidestepping the real issue for me, which is, the decision making process. How do we decide these issues while our child, newborn or not, lies in a hospital bed, apparently dying, most certainly suffering? Prenatal euthanasia is even trickier where for example in Holland you can abort a fetus up to the age of 22 weeks. So until then, if you discover a serious defect that even threatens the foetus' life you can end it's life, while if it is discovered after 22 weeks you must keep it alive to be born, only to face the decision of ending its life then. Both in Belgium and Great Brittain the law allows for ending the foetus' life later in pregnancy with the objective confirmation of a very serious and untreatable condition.

This drive to dissect a situation and to extract from it certain elements deemed useful that are then to be applied universally expose for me exactly what is wrong with western medical thinking. It mirrors exactly the development and use of pharmaceutical drugs wherein a plant is found to have medicinal qualities, even wondrous qualities which are then investigated in order to isolate the active ingredients.  All other ingredients are deemed irrelevant, even dangerous, and the newly isolated elements are then synthesized for mass production (I'm skipping the step of the testing since that system is in my opinion fatally flawed) and we all know that any synthesized compound, being chemically identical, works exactly the same, actually better than the natural compound. *rolls eyes*

Ignoring in this way the synergistic properties of chemical compounds in a plant, which are never investigated, flies firmly in contradiction to the idea that nature perhaps knows what it is doing in packaging its medicines. Now  I am not a golden-ageist, thinking that we just pluck flowers from the trees and cure cancer. But the synergy model has not been investigated and do not get me started on freely available chemical compounds which show the most promise for treatment but are not developed by pharmaceutical giants simply because they won't be able to patent it.

How does all this fit into the model of euthanasia?  Simple. "Euthanasia can be performed when both the parents and the physician come to the conclusion that no method exists to endow quality of life". The simplified elements of the euthanasia protocols fails completely to address the decision making process. Parents can be heavily influenced by the physician. Conversations are private and then the physician, with signed consent form in hand, passes on the decision. What has happened in the mean time? Are the parents scientists? How do you know to evaluate the cognizance of a child. Do you take into consideration the state of mind of the parents? 

The protocol discussion I reference (here) talks about establishing the prerequisite of insufferable pain, which indeed is difficult to establish, just as difficult as "likelihood of imminent death" as many of you have experienced with your children, but takes it a whole step further and discusses the need to further define the physician's ability to, with impunity, decide that alleviating suffering takes precedent over sustaining life even if that unbearable suffering has not yet manifested itself.  The saving grace is that they conclude more research is needed to determine actual life expectancy amongst children originally expected to live only a short time.

Meanwhile back on planet sanity...the synergy model of medicinal substances, not proven, neither disproved eventually will develop into an amalgamated system where eastern and western concepts of healing help each other. The same should be for ethics in my opinion. This dissecting will get you only so far, afterwards you have to put it all together again into a working whole. The human body is simply too complicated for us to figure it all out any time soon. It took a while to put together, you know. The human psyche is also complicated and looking only at the parts will never allow you to understand the whole. 

When a parent needs to decide to end the life of their child so many things come into play. So what is a holistic approach to this dilemma? Well part of it is the ability to acknowledge that at any given moment we cannot possess all the information, that the decision will necessarily be flawed, as for example "mybigmouth" commented here.  

Also relevant is how we see the quality of the lives of the children who were supposed to die but instead survived. Here you can see a dutch tv program (sorry no subtitles) which talks with parents of extreme multi complex handicapped children as well as medical experts. One mother describes her nine year old daughter as "Nothing. She is nothing", meaning that her daughter has no identity of her own, she is just an automaton. When pressed she says her daughter can sit, pick up a toy and rattle it, pick up a fork with food and put it in her mouth. My God, my God, I wish my Segev was capable of such "nothingness"! To be able to sit. To be able to grasp something on purpose. But what sounds to me like heaven is that mother's hell, obviously.

But we do want to know what is the right thing to do at that moment, don't we. There are two kinds of people though. Those that make a decision and let it be, not doubting themselves, or if they do, find a comfort in philosophy or religion or chemicals, and those that no matter what will cast doubts on themselves. I like people like "bigmouth" who felt lost after the death of her child, the decision that she made, not being certain. I like people like that because I know I can trust them. I can trust them to search for an answer that will never come, but they will continue searching because they are not certain, even after the death of the child. In the searching lies the secret of meaning. 

In the searching we go against the reductionist model of disabled children and Francis Crick's "The Astonishing Hypothesis" where the soul is simply a hoax, we are not more than the sum of our parts.

But if our children's lives, so outside of the scope of average existence and their occluded minds, severely hidden but not entirely lost, does not belong to the realm of myth, then what does? Surely people have not lost sight of the fact that myth is a vibrant, real, driving force in humanity. An integral part of our ablitity to advance, overcoming obstacles?

In Ethical paradoxes at the beginning of life by Jo Lebeer (physician and lecturer at the faculty of Medicine, Univ. of Antwerpen) he says, "The findings of Merker (B. Merker. "consciousness without a cerebral cortex: A challenge or neuroscience and medicine" Behaviour and Brain sciences 30:1 (2007) 63-81 which you can find here) -which corresponds with what parents experience when they know their children longer - that children with a serious multiple deficit can have a form of human consciousness, undermines therefore the theory of Singer*"

These issues all at once are very important to me and yet seem so far removed. I've had to decide on several occasions whether action would be taken to extend my son's life or not and I had no problem making those decisions, even if they went in contrast to the medical professionals'. 

Not because I have a particular religious conviction that gives me the certainty of holy knowledge nor even from the wisdom of those who have come before me, but rather from the uncertainty of what lies ahead, bolstered by a faith in the road we are on.

Let others decide on their protocols, fasten deliberation in iron and hail the new order, I will put my mind at ease, knowing that there will always be those looking beyond what has been established because, whether they understand this or not, truth is not written in stone, truth is alive.