The end-of-life for Fabiola, who was unable to follow her self-chosen path – euthanasia.
Since the seventies, living work-of-art Fabiola had a tremendous drive for freedom and the right to self-determination, frequently expressed via a variety of statements. The attention her striking appearance drew in the Amsterdam street and cultural scene focused media attention on these statements with a message. It all began with the coming out and the radical activists the Rooie Flikkers (Red Faggots); and the statements mushroomed to include all the prevailing forms of injustice in the world. And so this genial concept became a friendly and playful protest against everything that had any hint at all of injustice.
At the end of his/her life, he/she entered a phase in which a statement of this sort ought, in his/her own interests, to have played a serious role. Fabiola had signed a euthanasia declaration, in a full state of consciousness. For those nearest to him/her, there was therefore absolutely no doubt whatsoever. As soon as he/she were to suffer unbearable pain, no longer be communicative and enter a permanent vegetative state, he/she wished euthanasia to be carried out. This was known to the hospital Onze Lieve Vrouwe Gasthuis (OLVG), where his/her treatment had been discontinued owing to no prospect of recovery, and it had also been raised at the intake to the St Jacob Hospice. It became a point of discussion for the intake doctor in attendance, when it emerged that the St. Jacob was opposed to euthanasia as a matter of principle (different doctor?).
In the meantime, Fabiola was no longer in possession of his/her weapon (a flamboyant appearance, which generated attention) and was therefore no longer able to communicate his/her message: the consequence of a hiatus in the seemingly carefully formulated euthanasia legislation, the result of which was that his/her wishes were not respected and on which an over debilitated Fabiola no longer had any influence. Right up to the last days of his/her life, which he/she so clung to and cherished, this was only bearable because of the love and attention of friends and family. And was only able to be managed in the last phase by increasing the pain control by means of morphine. The effects of this and organ failure were that his/her consciousness visibly diminished. The moment had come at which euthanasia should have taken place. But that wish was never realised. While Fabiola was cared for lovingly and professionally, friends and family had to stand by and powerlessly watch how his/her life was unnecessarily prolonged and that last phase made more harrowing than it need have been. This was not only a violation of his/her ultimate and expressed wish for euthanasia, but also of everything that she believed in and stood for. Because ‘the policy’ was different, she was unable to choose her moment. The irony of this legislation is that euthanasia is only possible if you indicate with clarity of mind and in full consciousness that you wish to have the actual act carried out.
The irony lies, then, in that hiatus: as long as life is still worth living, the need for that actual enactment is not yet there. This arises at the moment that the quality of life approaches zero. But in most cases that is precisely when the patient is no longer able to indicate this loudly and clearly.
Fabiola died on January 27th, 2013.