My aunt is not going to die of Alzheimer’s disease, though she is certainly going to die with it.
Generally, Alzheimer’s does not kill its victims, it merely acts as an enabler. Having eaten away at memory, then reasoning and language, it eventually works its way into the brain stem which controls the nervous system and the functions that we perform unconsciously, such as breathing. Frequently, Alzheimer’s sufferers lose control of the swallowing reflex and breathe food and drink into their lungs. This can lead to death from aspiration pneumonia.
Having gone through the stage where she tried to eat the pattern off the plate, my aunt can now no longer feed herself, not that she has much of an appetite. She needs to be spoon fed, and can scarcely hold her “sippy cup”, let alone direct it to her mouth to drink. She still has the power of speech, although that power is severely limited. As the disease took hold, her conversation turned into the sort of predictive text you get on a phone; each word is one that might frequently follow the previous word, but the short-term memory loss meant that the purpose of the sentence was lost, and all that was left was a string of words, each related to the previous word, but without a subject. Since then, her speech has deteriorated further.
Some time ago, maybe a couple of years, when she could still, occasionally, string a short, coherent sentence together, she expressed the desire to die. That wish has yet to be granted. At the time of writing, there is a bill on assisted dying under consideration by the British parliament. That bill would grant terminally ill people with a prognosis of less than six months to live, the right to die before that time, if they so choose. I doubt that my aunt will last that long – she is bed-bound and wasting away – however, assuming that the bill had been enacted, she would not be granted her wish to die. That’s because she could no longer express that wish. One of the safeguards in the bill is that this should be a decision for the individual, not for anyone else: the bill would not allow me to sign my aunt’s death warrant. Furthermore, the individual making that decision must have capacity: the ability to make their own decisions. Almost by definition, someone with a degenerative brain disease like Alzheimer’s will lose capacity. That’s what it does. It eats away at executive functions – the ability to recall from memory at will, the ability to remember decisions made, the ability to make decisions, the ability to act on decisions and the ability to express them. At the time when she expressed the desire to die, she would not have been able to consult two independent doctors and bring her request before a court; even if she remembered the wish, she would need someone (someone like me) to help her through the process, and bringing my aunt through the official stages of the process would look an awful lot like coercion.
The provisions of the current bill specifically exclude people with mental illness. There is a potential way to include them – at least, to include degenerative conditions such as dementia. I would like to see a “living will” approach adopted: somebody with mental capacity should be able to specify whether or not they would opt for assisted death if they reach a condition in which they are in a terminal decline and no longer have mental capacity. This minimises the opportunity for coercion, since the decision can be made long before the evidence of the disease, let alone the debilitation.
So should I be allowed to kill my aunt? Currently, I am not. Under the bill going through parliament, it would be forbidden. Even under my suggested extension, I would not be allowed to sign my aunt’s death warrant; when she had all her faculties, she was unwilling to contemplate her own death, so she would not have made a living will setting out the conditions under which her life should be terminated.
My aunt was came from a family of four siblings. The eldest, my mother, died with Alzheimer’s disease. The other three all now have the disease. A complete generation of a family developing dementia suggests a genetic susceptibility to the disease. My father and his siblings all lived to a similar age to my mother. None of them developed dementia. I don’t know if I have inherited the genetic marker for the vulnerability from my mother, but I have a 50% chance of doing so. With that 50% comes the likelihood of losing executive function – the will to do anything and the ability to carry it out; the very things that make me a part of human society. I do not want this legislative change for my aunt. I want it for me.
Liberal Elite 