In the past I thought assisted dying was unnecessary and brutal, a poor substitute for good palliative care. I debated it with my aunts, in their late 90s, who cautioned: ‘there are worse things than dying’.
Then it became personal. I lost 80% of my hearing in one ear. I developed balance problems and had trouble focusing. Faced with several possible terminal diagnoses I began to think about quality of life. If a terminal diagnosis was confirmed, I decided that I would write my last column, finish my book and say goodbye.
My reason was not to spare others – it was for me. There are aspects of function that I could bear to lose but others that would so affect my quality of life that I’d rather leave now fairly intact. Some people may consider they have sufficient quality of life to continue living with the diagnosis I faced. I didn’t.
The trouble about having a progressive terminal condition is that if you leave it too long you might not be able to end your days independently. So you have to think about assisted dying while you still can. But the cost of that course of action may be that you lose some time that could have been acceptable. It was a price I was willing to pay. I could not have endured the progressive deterioration of physical and cognitive function. If we have the right as human beings to determine the manner of our lives then surely we should also have the right to determine the manner of our deaths.
It can be difficult for healthcare staff to work out when to treat and when to accept that it is all ending. Most people do not draw up advance directives. Then doctors, sometimes under pressure from relatives, can offer active treatment when it is inappropriate.
As a relative I have agonised at treatment decisions made not in the person’s best interest but by other relatives who could
not let go.
There is a time for all things; a time to live and a time to die. The important thing is that we keep the person at the centre
of this and respect the individual and her or his decisions.
I am now much better. I have my limitations, my damaged vestibular system means that I suffer episodic vertigo and can no longer drive. I can live with that and expect to be around for some time.
Linda Nazarko is a nurse consultant at Ealing PCT
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