Are the terminally ill too expensive?

It is alarming to read.

“The SUPPORT investigators found that despite an intervention designed to improve end-of-life care, many patients who died did so not only at great expense but also after spending at least 10 d in the ICU comatose, receiving mechanical ventilation, with do-not-resuscitate (DNR) orders written 2 d before death, and in pain.”

The American SUPPORT report looked at ways to reduce the health bill and speculated that it was just too darned expensive – and pointless – to keep terminally ill people alive. So access to the Intensive Care Unit, it argued, should, as  policy, be severely restricted.

It is a tricky point – whether doctors should ’strive/ Officiously to keep alive’, – and after sitting with a terminally ill and pain-ridden friend I would not (I think) want that for myself. But to make expense the prime factor is shocking.

Fortunately, the SUPPORT report (Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment) was in 1995  and has been challenged by newer research. This has shown that in fact minimal savings would be made  – if any – and that prognoses of imminent death were anyway unreliable. It recommends the right to ICU but also more emphasis on palliative care.

Point-scoring is a childish temptation. But nevertheless, to read what is a serious debate around cost-cutting from a country twhere many have been shouting that the British NHS would kill off grannies is – to say the least – ironic.

Beached

There’s a sad new development in middle-class India. Traditionally, when parents get old, they have lived with their son’s family. You can see the value of it. Kids grow close to grandparents; old people are cared for and have an active role. It suits everyone, and is a virtuous circle.

Or was.

Migration has broken into it. So many bright kids have now gone to study and then settled in the States that they have given an added dimension to the empty nest syndrome. What to do with your life – especially if you are woman who has spent her life child-rearing – if not to be the grandparent?

Yesterday I spent time with an impressive bunch of elders in a new phenomenon – a senior citizens’ ’stay and pay’ care home – unthinkable in conservative India a generation ago. Godhuli (or Twilight) has responded to a new need, and most of the inmates there – from 58 to 90 – were philosophical about the shift. Old style family servants are a thing of the past – robbery and violence is not unknown – and children don’t stay in one place, even in India itself.

But the biggest complaint was aimlessness. ‘We are reasonably modern – we don’t sit in one place and smoke hookah.’

‘Give us something to do,’ pleaded a senior ex-army man, ‘Some small job of around 3 to 4 hours a day. We still have a contribution to make!’

But jobs for the elderly can’t be a priority in a country with such a vast youth population. The same syndrome can be found in the villages, where young people have left to hunt for work in big cities. The National Rural Employment scheme, explained Mathew Cherian, director of HelpAge India, guaranteed only 100 days of work, and even that would go any young ones still there and not to the fit elderly. And who would care for the unfit, with their children gone?

But it is estimated that the youth bulge will decline in proportion, and the currently 81 million over 60s in India will grow. By 2025, it is reckoned there will be 177 million ‘grey’ citizens.

Clear Thinking

Joan Didion – ‘The Year of Magical Thinking’ (Vintage 2006)

What a breathtaking book. I have rarely read such a clear, honest and corrosive analysis of grief.

Didion wrote it after the sudden death of her husband, John Gregory Dunne, at the dinner they were sharing at home at the end of a normal day together, one of many in their long and close marriage.

She is extraordinary – shirks nothing but at the same time indulges in nothing. Her book tracks back and forth in a fluid series of reflections over their life together, over their daughter’s simultaneous coma, over the precise medical details of what took place at that last fateful meal: searching all the time for the sense of it all.

‘The Year of Magical Thinking’ is a way of keeping her husband alive for herself, but also – finally – of accepting. ‘I think about swimming with him into the cave at Portuguese Bend, about the swell of clear water, the way it changed, the swiftness and power it gained as it narrowed through the rocks at the base of the point. The tide had to be just right…You had to feel the swell change. You had to go with the change. He told me that.’

There is no magic, or deus ex machina. ‘No eye is on the sparrow but he did tell me that.’

The Golden Lady of the Paris Station

Sometimes you run across people with such sheer, utter style that you want to go up and salute them.

I was waiting in the Gare de l’Est in Paris when I noticed a German couple beside me. Hard not to notice them – at least the female of the pair. Literally, she glittered.  I have never seen so much gold – from gold washed blonde carefully-coiffured hair down to sparkly little golden boots. Every bit of her outfit.

And I wanted to say, ‘Right on, Frau!’ because she was by no means in the first flush of youth.  Not even near it. Instead I said meekly, would she mind if I took a photograph?  And here she is (but I missed out the boots, dammit) – the feisty golden lady of the Gare de l’Est.

Oh, how we laughed…

I took a break from my first job, years ago, and joined a group of recent graduates on a trip to the USSR (as it then was).  You couldn’t just wander around in those days. You had to have an Intourist minder constantly by your side. They were mainly dull and cautious creatures, but there was one sparkly woman who was about our age who regaled us with tales of the murkier moments of Intourist guiding.

There was one group, she giggled, who needed special treatment. The regional director had called the whole team into his office for a briefing. Up on the wall, he had tacked a large map of Leningrad (as it still was) marked with red dots. ‘This group has particular needs,’ he said.  What could they be, they had all thought.)  ‘And you will have to anticipate them.’ Picking up a long stick, he started pointing out the red dots. ‘It is a group of older people,’ he said. ‘These are the locations of all the public lavatories in Leningrad….Memorise them!’

Oh, how we laughed. Smug in our security of all of us being only 20-something.

Not so funny now, now that I am an older person…

Up in the air

It’s nice to occasionally log onto One and Other and see what is going on at the time on the empty plinth. Mostly it’s inconsequential, and that’s nice too because it is such a underplayed counter to the grand heroics that are celebrated on the other plinths in Trafalgar Square. Yesterday (9am) I found a relaxed and quietly beautiful middle-aged woman from Somerset called Jude.  She was sitting up there, chatting aloud reflectively to herself, taking in all the changing life in the square way beneath her. ‘I’ve reached the age now when I like nothing better than just sitting and watching the world go by,’ she said as she took another bite out of her banana and then very carefully wrapped up the skin to throw away when her hour in the air was done.

Talking about the unthinkable

I have just discovered a use I hadn’t suspected for blogs. I went to visit an friend of very long standing yesterday, in a hospice where she is in the final throes of cancer. It was so dreadful that I cannot speak directly about it to anyone.

There is a Greek myth that describes a curse put on Midas by Apollo, who wished ass’s ears on the king. Midas was appalled and hid them determinedly under  a large turban. Only his barber knew his secret and he was under pain of death not to tell anyone. But the knowledge burned and burned inside him. So one day he dug a small hole in the ground and whispered, ‘King Midas has ass’s ears,’ in it and felt better. But then what happened? A bed of reeds seeded themselves there, and rapidly grew and grew. And all along the vast reedbed, the sound swished and whispered: ‘King Midas has ass’s ears…King Midas hasss ass’s ears..sss…’ and the whole world came to know about it.

So maybe a blog is like a reedbed, or a small hole in the ground. I can say into it what I cannot say outwardly.

There is something uniquely dreadful about watching the dying process of a friend. It isn’t that it is new.  I was with my mother when she died, and knew several patients at the Mildmay hospital, who succumbed to AIDS. All sad deaths, but dealable. But to see a friend – someone with whom I had navigated all those college years, and then spent months together travelling – to look so haggard and to be in such pain: it is heartbreaking. And there is nothing to do, nothing to be done at all.

What point is there in it?  This is not ennobling. It is not cathartic. To have to struggle through to death like this.

Debbie Purdy has to be right.

Getting off the motorway and finding freedom

There are so many things I wish I could still do. My biggest regret is the way that possibilities shrink as time goes by. I’ll never be a stage designer now and I don’t think I’ll win the Man-Booker Prize.

But there is another side to this. And that is getting to relish the moment.  Because I’m not going anywhere major, it gives me the freedom to look around and take in where I am.  I can leave the motorway and explore the byways. And the backwaters…

So this is… just drifting.  This was what artist Amy Sharrock got people to do for quarter of an hour at twilight on Battersea Park boating pond. You got in her little dinghy with her, and then just let the breeze take you wherever it wanted. Mallards bobbed around on their own errands. Wind rippled the water. It started to get chilly. For a little slice of time, time slowed down.

It’s attitude, just attitude.

‘My work is just about being a human being on this planet and using nature as its source. I like the intellectual pleasure of original ideas and the physical pleasure of realising them. A long road or a wilderness walk is basically walking all day and sleeping all night. I enjoy the simple pleasures of wellbeing, independence, opportunism, eating, dreaming, happenstance, of passing through the land, sometimes leaving (memorable) traces along the way, of finding a new campsite each night. And then moving on.’

This comes from one of the panels in Richard Long’s exhibition, ‘Heaven and Earth’ at Tate Britain.

This is the mark of Long’s track across grass – his show includes many others: what he terms spontaneous primitive mark-making: the desire to leave your mark, and at the same time the realisation that it is transitory and it will fade away.

Banking deficit

I went for my Biobank session the other day (see earlier Post), and spent 90 minutes inputting details about my lifestyle and having my height, weight and bone density measured. This is all for the benefit of posterity. Half a million people between 40 and 69 are doing the same, and over time researchers will try and work out what are the common factors that contribute to some rather than others contracting cancer, dementia and so on.

Good idea, yes?  I had thought so. But I came away feeling dissatisfied, and that feeling has grown. The Biobankers know a lot about one side of my life, but not much about another. They know about my normal walking pace, how much active DIY I do (none), what I eat for breakfast and the operations I have had. But they know very little about the elements that create quality of life. Very little on the reflective side – interaction with nature, yoga, meditation. Even pets – some research has suggested they give their owners longer and happier lives. I could have ticked a baffling category, ‘religious clubs’,  but I was not asked if faith featured in my life. All that seems a big omission. At a simple level, fulfillment decreases stress and lower stress reduces propensity to illness.

A lot of research is going on into the connection between creativity and health – or ‘flourishing lives’ as the Centre for Humanities and Arts in Health and Medicine charmingly call them.  But this particular bank won’t give future researchers much capital to go on.

Look out for the monster ladybirds

It was clearly big news. The guy on the radio had a hushed portentous tone to his voice…”and in London today – 32 degrees!’

‘Oh wow!’ we were meant to feel. Not like one of those characters in the comics with a bemused question mark hovering over their heads. But I am ready to bet that there are scores of people out there who were also doing a quick calculation. ‘Hm…32 degrees: double it, and then add on 30. What does that make? …90 degrees. Oh wow!’  Except that the wow came around five minutes after the item had ended.

By that time  a woman had come on, talking about the dreaded Harlequin ladybirds who are invading Britain. They are alien ladybirds, not at all like our very own native ones. Indeed, they are known to even eat them.  We can recognise the violaters, she said because they are a different size – up to 8mm! Er…OK.. Pictures of monster ladybirds skittered around my head.

When will the BBC realise that not everybody thinks automatically in metric and centigrade? Being in ones 60s is not being historic. It’s not like shouting at deaf Great Aunt Jane, ‘No, we don’t use candles nowadays, Great Aunt!’

We’ve got our marbles, but we also have – many of us -  different scales of measurement.  Don’t shut us out.