Hazel McHaffie

Documented wishes

Three weeks ago I told you about the real life ethical quandaries I was grappling with in relation to representing my sister’s wishes now she was unable to speak for herself. Sadly our experience degenerated rapidly when she tested positive and was transferred to a Covid bay on a different ward and under the care of a different consultant. No visitors were allowed, and I found myself powerless to defend her or indeed speak to anyone above the grade of Health Care Assistant or junior doctor. She was totally alone, 300 miles away, and her documented wishes were being ignored.

It was only when her condition deteriorated further that I was told I could have 10 minutes, maybe even 30 minutes, with her. Finally I had an opportunity to plead her cause in person. To my horror and disbelief I found that
– no one had even bothered to read her advance directive
– a doctor told me ‘nobody pays attention to a bit of paper’
– the consultant believed he had the right to dictate; his personal preferences for ‘striving officiously to keep alive’ at all costs, over-rode a legal document
– I was subjected to a brutal inquisition about every potential aspect of my loved one’s dying.

I share this in the spirit of underlining the reality. No matter how carefully and sensitively you might prepare for a situation like this, the ethos of one person can completely wreck your plans. And please don’t let’s hide behind Covid. The previous consultant had been exemplary … he showed it could be done remotely.

Mercifully, I knew I had right on my side, I had a sacred responsibility to fulfil, and I absolutely refused to be cowed. We transferred my sister to a wonderful care home where futile interventions were abandoned, my brother and I could be with her throughout the dying process, day and night, and both she and we were cherished and cared for with respect, dignity and love. Death came peacefully and naturally.

My heart goes out to all those families who have no one to defend them. All those who have been separated at this crucial time in their lives. All those whose memories are forever scarred by insensitivity or officiousness or deficient systems. I feel a need to be a voice for them too.

But for now I pay tribute to a wonderful sister, the most selfless and kind person I know Though her own life was chequered with tragedy, she never complained, but focused her energies on helping others. A shining example. And a hard act to follow!

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