Death in hospital need not be a medicalised trauma

http://www.theguardian.com/commentisfree/2014/jan/12/hospital-death-not-medicalised-trauma

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My mother-in-law died three years ago in St Thomas' hospital in London. She was 86 and no longer well, but seeing her die was overwhelming and the loss remains raw. Yet the manner of her going – managed with extraordinary kindness, intelligence and sensitivity by the staff of that NHS hospital – was as good as I can imagine a 21st-century death to be.

Death is not easy to discuss. Viscerally, emotionally intimate, it summons our most overpowering feelings. It's inevitable, perhaps, that the "bad" experiences are given more airtime than the "good'. But in this climate of intense debate about how much medical intervention should or shouldn't be brought to bear on the process, don't those of us who have witnessed the – harried, budget-chasing but nevertheless consistently patient-focused – NHS at its best have an almost civic duty to say so?

Helen was brought up in prim and unforgiving Adelaide. In 1949, she escaped, marrying a Jewish barrister from Cardiff and settling in England. She had two children – one of them my husband – and six grandchildren. She was a graceful, memorable woman – tall, slender, cultured, chic, shy, generous and engagingly teaseable.

Widowed too young, she was a lovingly energetic and involved grandmother. In her late 70s she still swam, did Pilates and regularly long-hauled it alone back to Australia. For a long time, hers seemed to be the kind of old age we all dream of – one where you simply grow steadily older, while remaining absolutely and pithily yourself.

It's hard to pinpoint exactly how and when this changed. The persistent pain after she moved a planter on the patio? The backache, the lumbar spine operation, the falls. A hip replacement and a gradual ceasing to find the energy to exercise. And then the nagging lack of concentration: radio was irritating, television pointless. We learned that a series of little strokes were slowly causing vascular dementia. And once we knew that, her life – and in some ways her self – just seemed to unravel. And she was, of course, increasingly immobile. A depressingly everyday story of old age, then.

When, one Sunday in April, she collapsed and was ambulanced – hardly for the first time – to St Thomas', we were told she'd suffered a major stroke. I remember that she was conscious and seemed comfortable, though she was oddly somnolent, passive. Still, we imagined she'd be home by the end of the week at most.

But on the Monday, a registrar took my sister-in-law and me – the by now usual rhythm of a family rota – into a silent, sunlit room at the end of the corridor. He told us, with immense care and tact, that Helen would not recover from this stroke. I remember the small moment of shock, the trying to grasp it.

I think it was my sister-in-law who asked the only possible question: how long? Five to eight days, he said. Really? That precise? Yes, he'd seen it before. I think he sat with us for a few more moments in case we had further questions. We were offered tea. And, though Helen had schooled us to fight any and all attempts at resuscitation or intervention, on that day there was no mention of it. Kindness and acceptance – and ultimately medical discretion – were the only factors in play.

Helen was moved into that same 11th-floor room at the end of the corridor: a bright, sunny space all to herself, away from the frenzy of the ward. It happened to be the week that Icelandic volcano dust grounded all aircraft and, though she never knew it, the blue skies around her were miraculously, soaringly, eerily empty and still. And for those next few equally eerie days, we, the family, were – amazingly – allowed to come and go at any time, exactly as we pleased.

We took it in turns, sometimes one of us, sometimes two or three or more, sitting and holding her hand, talking to her, trying to make sure she felt loved and cared for. Sometimes, especially when the huge teenage kids (three of whom had come into the world a couple of floors above where we now sat) arrived, it became rowdy. Sandwiches were eaten, there was laughter, teasing, backchat. Other times we sat in companionable silence. Sometimes, we cried.

By Thursday afternoon something, somehow, was different. And by the time we watched the sun set over the Waterloo rooftops, those of us who happened to be there – her two children, two of her grandchildren and I – sensed we should not leave.

The next part should stay as private as possible. But I hope it's all right to say that, managed with such gentleness and sensitivity by the staff, Helen's death felt oddly like the labour of birth: exhausting and devastating, yes, but natural too and, in some strange way, productive. More crucially, and reassuringly, the nurses understood this far better than we did.

As the moment drew near and, inevitably distressed on Helen's behalf, we requested pain relief, these nurses explained, with real gentleness and compassion, that it would be far better for her if they did not intervene. And they were right. Her final moments were peaceful. And to be allowed to be there with her as they ticked on past – it's not something I can put into words.

I've thought often about whether or not to write about this, especially when I read yet another newspaper account of how the medicalisation of death, the obsession with intervention and saving at all costs, is robbing us all of our right to die in peace. But I've always hesitated. Partly because death, any death, is such an intensely intimate experience and seeking to describe it may be, for lots of reasons, a step too far. And partly, of course, because this particular death belongs at least as much to the others who were present as it does to me. All you have here is a purely subjective description from someone who loved her children's grandmother very much.

And yet. It seems to me that what we all experienced on the 11th floor of St Thomas' Hospital on that April evening was something that ought to be known about, appreciated, celebrated even. We surely can't be the only family who've had such an experience? So I hope that Helen – whose love and friendship I feel moved to have known – would forgive me. Because how can we possibly debate these issues with any honesty if we don't seek to share our most positive experiences of intensely private moments?

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