Hazel McHaffie

Theory versus practice

There’s nothing like experience for teaching you that theory only takes you so far.

For a few weeks now I’ve been living through a situation that in essence could well be fraught with ethical difficulties and conundrums. My sister had a catastrophic stroke in mid-October. She is now without the power of speech, paralysed, and with limited capacity to comprehend fine nuances. Totally dependent on others. Extremely frail with multiple co-morbidities. Furthermore, at times, she has appeared unaware of her surroundings and unresponsive to conversation. Unreachable.

I am her next of kin and her authorised health proxy. She and I together made sure some years back that we had all the paperwork for this in place; signed, sealed and delivered. We also prepared her Advanced Directive, revisited several times to ensure it represents her sustained wish. I am confident it does.

So, here we are, in one fell swoop, in exactly the kind of situation envisaged when the directive might become critical to decision making on her behalf. The consultant taking care of her in the first few weeks has been exemplary – a brilliant communicator as well as so kind and caring. He and I talked about the directive, and a copy is in her medical notes.

But, when exactly does the theoretical become the real? When does treatment become more burdensome than beneficial? When does the prospect of a life of dependence and indignity become so bad that death is a better option?  Who is going to suggest withholding medication in a crisis to ‘let nature take its course’? At what point does someone start that conversation? And who should have the casting vote?

We aren’t there yet. Currently we’re tiptoeing along establishing baselines, testing limits, waiting, watching, thinking. And right now, this week, starting all over again communicating remotely with a new team of professionals in a different ward since she tested positive for Covid-19. Putting someone’s wishes into effect in these circumstances is a far far harder thing in reality than in theory. And I’m so grateful for people like our dedicated consultant with experience and wisdom to guide us. The NHS has come in for some heavy criticism over the past couple of years; I want to shout out for people like him, like every person in the vast team who has made a difference in the care of my beloved relative … a patient who ticks none of the celebrity high-profile boxes, but who has all her life made the world a better place.

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