Talking of dignity…

‘YOU should have let me die…’ Whenever she was tired, angry (often) or frustrated (usually), my mother never, ever forgot who she blamed for her loss of self or her unwanted existence.

As sole child still resident in Guernsey, this happened a lot. Mostly every time I saw her. Because who else could she take her bitterness out on?

Walking into an unmarked plate glass door, which triggered blurred vision, headaches and eventual diagnosis of an aneurysm, were actually to blame, rather than her family.

The thing with an aneurysm of the brain, though, is doing nothing really isn’t an option.

Literally a ticking time-bomb in the skull, if/when the weakened blood vessel does rupture, instant death is what you pray for.

Experience a subarachnoid haemorrhage – the so-called ‘thunderclap headache’, like nothing ever experienced – and about three in five people die within two weeks. Half of those who survive are left with severe brain damage and disability. Not an attractive prospect.

So dad, still with us then, and we three kids agonised with the old girl, but Southampton it was for brain surgery because that at least provided a chance of a long and happy life.

As it happens, the operation was successful in that it isolated and dealt with the aneurysm. But it also triggered a shattering stroke. The registrar was matter of fact post-op. ‘Prepare yourselves for your mother to be a vegetable for the rest of her life,’ he advised, oblivious to our multi-level distress.

Fair play, she did much better than that, regained her driving licence, much of her speech and a largely independent life. But she was never again the Joan she was or wanted to be – and it was all my fault. Obviously.

I mention this now because when her physical end of life approached, that too was fraught for her and we three kids – don’t you just love hospital reunions? – had no hesitation in agreeing with the medics that the best and only available treatment was a suspension of treatment.

Emphysema, the slow destruction of lung function caused, in my mother’s case, by her love affair with cigarettes, ensured this was not a benign process.

Separately and later, the family had similar decisions to make for Vera, my unbelievably lovely mother-in-law, then in the latter stages of dementia.

Again, no treatment was the treatment. But this was wrapped up as the Liverpool Care Pathway, a barbaric and deeply distressing process in which treatment and sustenance of any kind were withdrawn from patients until they ceased to be.

Decades on, I still wonder why there wasn’t a better, kinder, more humane, somehow more caring, ‘treatment’ available for two of the most special people in my life.

So as the debate triggered by Gavin St Pier moves on, all I hope is that the decision-makers approach it with an open mind, focused on what’s right.

What’s right is not imposing their views – no matter how profoundly held – on the rest of us. Instead, it’s about harnessing all that collective intellectual ability and creativity to see whether or how the expression ‘dignity in death’ can be given real meaning and enabling choice to inform end-of-life treatment regimes.

Joan and Vera would appreciate that.

CHANGING tack completely, did anyone else pick up on the fundamental flaw in the whole public sector pension reform process?

Unions reluctantly accepted the States’ offer on the basis it was the best achievable through negotiation and that refusal could lead to something worse being imposed.

Unite went on to challenge that and there was much rejoicing when they won a new option involving an automatic lump sum and securing a pension age of 65 (subject to conditions).

That was described in some areas as a ‘victory’, yet the specialist advisers employed by the States calculated the cost of the new option as being the same as the original proposal rejected by Unite, after all the different elements involved are allowed for.

Prospect, the professionals’ union and which has a strong presence here, has written to its members warning that talk of a ‘win’ is potentially very misleading because it ignores other important elements of the new option – higher employee contributions and a slower build-up of pension benefits.

‘If the legal arguments against detrimental pension changes were that strong it is unlikely that the case would have been settled for an outcome that cost the employer no more than the original proposal and cost the members affected more in contributions,’ it says.

In other words, had Unite stuck to its guns and won the court case, surely it would have gained a proper victory for members? Not one that’s cost them money.

What does this actually mean? The only interpretation I can put on it is that if the States had put as much effort into communicating with their employees as Prospect is doing to warn its members about the dangers of the ‘victory option’ then the pension saga could have been over years ago.

Actually, I’ll stick my neck out a bit further.

Pensions are complicated, arcane things, which is why only actuaries really understand them. So without adequate guidance, would it be that surprising if States employees had no idea what pension benefits they actually possessed? Or any understanding of what they were being offered and therefore no idea of what the new deal meant? Or, indeed, what they were really signing up to with the ‘victory’ option?

That, though, is more of a reflection on the employer’s ability or willingness to explain its reforms to its own staff.