Friday, December 05, 2008

A Father's death at home with his family around him

My Dad had the best death

Very few people pass away at home. The writer, whose father died in his bed, explains the benefits for everyone of a dignified departure

Michael Bywater

Sunday Times 30 November 2008

A week ago today, my sister took a nap on the sofa. She had been holding my father’s hand all night. An odd hand to hold: just bones and sinew and bruised paper skin, bent into a claw from Dupuytren’s contracture. He hadn’t had it fixed because it kept his grip vice-like on his putter and made his short game lethal, even though he’d given up golf almost a decade ago when the osteoporosis kicked in. A testicle had been removed shortly beforehand because of prostate cancer; and some 65 years before that, he’d had the other testicle removed after the discovery of a tumour. Nature had it in for Dad.

Eighteen months ago he got tired of my sister nagging at him for getting too thin, and booked himself in for a chest x-ray. As a retired doctor, he knew perfectly well what they’d find, and so they did: small-cell lung cancer. Forty a day in his prime, though he’d brought it down a bit. Let’s say about 750,000 fags, conservatively. A week before the cancer more or less silenced him for good, he said: “This smoking. I never inhaled, you know.” (Nor did he: he was a perma-nent-fag-in-the-corner-of-the-mouth man.) “So, really,” he continued, “what’s doing for me is passive smoking.”

The fact remains, passive or active, it was doing for him, and the prostate cancer was doing for him too, and eventually one or the other or maybe both got into his brain. Here, in front of me, is a slightly shaky note in his hand, listing various specialists and his own tentative diagnosis: papilloedema. The vision goes odd. The tumour’s in the brain. When you’re 87 and skin-and-bone, thin as prison soup, that means the show’s over.

So a week ago today, my sister, who had been holding his hand all night, took a brief nap on the sofa. He was fine. His breathing steady, if a bit shallow. No discomfort. You get a very dry mouth when you’re half in, half out of the world, teeth out and mouth open, but she’d dealt with that.
“I’m going to moisten your lips, Daddy,” she’d said. (He had gone blind a couple of weeks earlier, but wouldn’t admit it.) “Would you like water or glycerine?” He’d gathered his strength, sucked air into his racked lungs and through his switched-off larynx articulated with saloon-bar clarity: “Gin.”
And gin he got. And there she was, on the sofa, drifting off to the sound of his breathing, and a few minutes later she woke slightly perplexed, wondering what had changed, and realised that what had changed was that Dad wasn’t breathing any more. He had just . . . stopped.

The National Audit Office said last week that dying patients aren’t being treated with dignity and respect. Only one in five deaths in England occurs in the home, even though two-thirds of people say that is where they would prefer to die. Not enough funding. Not enough support. The usual suspects. Others can pick over the bones of the report. I don’t have time; I have a father to bury. But if there’s a better death than my father’s, I can’t imagine it.

We brought his bed downstairs towards the end, and there he lay, fading peaceably in his own sitting room, surrounded by his dogs and grandchildren and cats and people coming in and out.
I say “peaceably”, but there were episodes of purest tyranny. My sister had given him one of those wireless dingdong doorbells to summon her, and he exercised it to the limit. But although he had been denunciatory, condemning her to me, and me to her, and his doctors (who had actually called everything perfectly) to anyone who’d listen, once he was on his deathbed he became affable and loving. Right until the end, when it just dwindled to a tiny white spot, like an old television, before going out entirely with an inaudible plink, his personality was entire.

“This seeing the sick endears them to us, us too it endears,” wrote Gerard Manley Hopkins in Felix Ran-dal, and of course it does. My father, widowed almost a decade ago, was touched and stroked more in his last weeks than in the intervening years.

I had forgotten what he felt like; being English, we had not embraced since I was a toddler. Now, helping him to his unsteady feet to try to pee, I held him time after time. I knew his weight and his smell, and remembered him holding me up in the night to pee when I was a little one, being potty-trained. He was little now, and, just like me back then, he couldn’t go. This is the point at which most people would go into hospital or hospice. But the inadequate services provided for the dying were in his case so much more than adequate that it seems to me that the National Audit Office must have been writing about another country.

Beyond all praise were Sinead and his other carers, who came in to wash him and help him up (when he was still getting up); Penny and Judith and Jane and Claire from the Hospice at Home service; the district nurses Carolyn and Steph; and everyone who came to help my sister look after him.

There are, I think, three keys to a good death such as my father’s. The first is that the crucial person is the district nurse. It’s she who coordinates everything. When I explained to my father’s GP that he was perhaps making not-unreasonable assumptions: retired doctor, daughter living with him, nice house in posh road, so everything fine – but that it wasn’t fine – he sent along the nurse, and everything kicked in with remarkable speed. Help – stuff and people – arrived swiftly.

The second is this: in my father’s case, nobody lost their nerve. Urinary retention, for example, is horrid for the sufferer, and that’s the point at which many dying people find themselves taken into hospital because the family can’t cope. Measuring doses of morphine may go against the grain, but it’s not hard: 2mg, wait 10 minutes, another 2mg, wait 10 minutes, and so on until the pain or the distress eases. There’s the question of squeamish-ness, too. Being a doctor, my father had none – so when we helped him up and held him, as he shook with strain, on his Zimmer frame to pee, it bothered him not a jot. Fortunately, it didn’t bother my sister or her children, or indeed her boyfriend. They are all animal people – mainly horses – and as easy about bodies as any doctor.

And the third, crucial, thing in Dad’s case was that my sister was already there. She had fled back to the family home after her marriage exploded; and when he started to die, she cared for him with the devotion of a lioness with a frail cub. A week before the end, I had suggested coming via the hospital to get a catheter kit, but didn’t get beyond the word “hospital”.

“He is not going into hospital,” she growled. “But . . .” “He is not. Going. Into. Hospital,” she repeated. “He wanted to die at home and that is where he will die.”
And so he did, but perhaps he could not have done so without his daughter’s care. She gave up her job and looked after him for his final weeks, which struck her as only reasonable but I think may be rare.

I did what I could but it was insignificant in comparison, and leads me to think that it’s not the state services that are letting people down, but our family structures. The carers of the dying are either too old and frail themselves, or simply . . . too busy.

After my father faded out and stopped breathing, we toasted him in champagne. His granddaughter sat beside his corpse, stroking his head as he gently cooled. We reincorporated him into the family in his new role as ancestor, and he lay in his bed in the sitting room until tea-time. None of this could have happened in hospital. We all knew him better as a result. We had handled him, held him, caressed him. Repaid him. And felt him cool, and understood that he was gone.

This could not have happened, of course, without the services of Hospice at Home, Macmillan nurses and NHS district nurses – which certainly did not fail him. But neither could it have happened without my sister.

She and I had been semi-estranged for many years; and the fact that she’d had to move back home had distressed and perplexed Dad no end. I had listened for 3½ years to him ranting about it. But all that stopped towards the end.

If dying at home has many known benefits, here’s another one: the old man, at the very end of his life, achieved something remarkable, one final gift. In the very jaws of death, he reunited his family.