Absolutes at the end of life [1]

"Thou shalt not kill, but.needst not strive/Officiously to keep alive."  Arthur Hugh Clough, one of the great Victorian agnostics.

I am wary of absolutism in morals.  I prefer to say that there is a presumption in favour of something (telling the truth, being kind) or against it (theft, jealousy) rather than: you must always or you must never.  In general one doesn't hold with killing; anyone who takes a life has a case to answer, in the way that the preserver of life does not.  Absolute pacifists excepted, we allow for the exception of killing in war, which is fine.  Brave.  Heroic. Yeah, right.  Don't get me started: I'm not a pacifist, I just think war is a totally disgusting activity.

Where were we?  Oh yes, absolute moral imperatives.  Clough is right: there is none which requires us to preserve life at all costs.  Compassion may require us to end the life of another, as humanely as we can.  Religious conservatives dissent, of course.

At the Hillsborough disaster on 15 April 1989, 95 football fans were killed, either on the day or not long afterward.  A 96th fan, Tony Bland, survived.... except he didn't.  He entered a "persistent vegatative state" from within which no-one could communicate with him or he with anyone else.  All his biological functions had to be attended to by medical staff, apart from breathing, which he could still do without machine support.  Which meant he had to be kept alive.

If you can call it living.  But there was nothing to distinguish between this "living" and the mere existence of the bed in the ward he on lay for four years.  He wouldn't be waking up.  He might as well have died at Hillsborough, as his parents would have preferred.  Common sense suggested that Tony should be put to sleep for good, but under English law the administering of a lethal injection would have counted as murder.  Eventually the law was made to see sense, and gave permission for Tony's nutrition to be withdrawn, so that he would in effect starve to death. 

The case made legal history and is worth looking up.  What you may not discover is the reaction of the "Sanctity of Life" brigade, who had kept pretty quiet while the legal battle was raging.  That's quiet as in offering no pastoral support to Tony's parents and his consultant, all of whom as it happened were Christians and could share their agonising as brothers and sister in the Lord, so to speak, as well as within the formal relationship of doctor and carers.  Mr & Mrs Bland, we learned, felt that God's will was for Tony's vegetative state to be ended.  They'd prayed this through, they felt at peace with that conclusion.  But as soon as the decision to withdraw treatment from Tony was announced, then the right-to-lifers crawled out of the woodwork, standing in sanctimonious protest with their placards on the entrance drive to Airedale Hospital near Keighley, where Tony was (it was also my local hospital at the time, which is how I know this detail.)

The moralisers' action served only to distress the Blands, challenge the integrity of a highly regarded consultant while failing to serve Tony's interests.  It trumpeted their own self-righteousness, insensitivity and ignorance.

The rest of us were provoked by the Tony Bland case into reflecting both on what this thing called "life" is that is supposed to have sanctity, and on the difficulty of framing laws that may allow us to hasten death when to preserve life benefits no-one.  Only the most blinkered of ideologues would argue that withdrawing Tony Bland's treatment undermined some vital principle.  Saying that, however, raises more questions than can easily be answered: such as, how persistent does a vegetative state have to be before it justifies the termination of life?  And, by extension, where there is life, even conscious life but precious little by way of quality and no real prospect of improvement, would that make it OK to reach for the lethal hypodermic?

For Andrew Devine's parents the questions present themselves in the most acute and tragic form; for Andrew was also critically injured at Hillsborough.  Like Tony Bland, he existed for years in a deep coma and might have been allowed to die on the same grounds.   Unlike the Blands, however, Hilary and Stanley Devine held out, hoping for a miracle.  The twist is that Andrew's vegetative state did not persist: he came round.  Sort of.  In 1997 he opened his eyes and recovery seemed to be on the cards.  In 2009, twenty years after the disaster, the Daily Mirror carried this piece, in which the Devines come across not only as immensely stoical, appreciative of people's kindness, still full of "why's" about the dreadful events of 1989, but also stubborn going on denialist.  The photograph shows them tough, defiant.  They speak of Andrew's ability to understand what's going on, for which there is no evidence: only that he has some minimal consciousness, which has not significantly improved in 12 years.  The Devines seem to be great copers, but at some cost to their sense of proportion.

As I check this post for mistakes, "File on 4" is devoting a programme to the plight of persistent vegetative state victims, of whom there are 5000 in this country alone, and their distraught carers.  Gulp.  There but for the grace of God... Do the Blands ever look at the Devines and think: we were fortunate in that Tony never came round before the decision to end his "life" was taken.  That wasn't murder: Andrew Devine is comatose rather than in a coma, so if you ended his life, murder is exactly what it would be.  Which seems a harsh, legalistic judgement, but what else can you say?  He's not a candidate for assisted dying, because he's not alive enough to express a preference for life over death.  That you have no quality of life does not entitle anyone else to put you out of your misery; if it were otherwise, the dementia homes would go out of business.

Further reflection needed, possibly in the light of Terry Pratchett's programme on the subject.

Snippets

Odd reflections on Dad's situation...

I don't think I have recorded the social worker's visit, at the point where it was becoming obvious that he had dementia but before the formal diagnosis.  In one revealing episode he suddenly decided he was going to tell the kind lady about some short stories he had written, with a view to publication in at least the church magazine, if not for the general public.  Dad can construct a grammatically correct English sentence and compose plausible dialogue, and that's as far as his literary talent stretches: he's not going to be making the Booker shortlist any time soon.   More embarrassing than the triteness of his writing was his complete inability to reaalise that social workers don't visit in order to have little stories read to them.  But Dad had an audience, so there was no stopping him.  He had no idea how blatantly his behaviour betrayed his condition.

-o0o-

 An illustration of how timescales collapse in the mind of the pwd.  Dad was recalling the various chapels that had closed over the years - "in quick succession" was his phrase.  Well, one of them to my certain knowledge had closed before I was born, another just a couple of years back.  Succession, OK.  Quick - hardly.

-o0o-

In his prime, Dad was systematic, more so than I'll ever be.  His paperwork was always up to date, he kept lists relevant to his various interests.  One that he'd dug out on a recent visit, for old times' sake I guess, was a catalogue of hymns, showing the combination of organ stops that he would use for each tune.

Then there were files full of transcripts, painstakingly hand-copied from borrowed scores (this was long, long before the days of photocopiers).  He'd taken one from his music cupboard and it was sitting there on his piano open at a certain piece.  I sat down on the stool and sight read it.  "Bit of a stinker, that one," said Dad.  I gulped.  That's what he always used to say if I was tackling a hard passage and he heard me making mistakes, but jeepers, this was a doddle, completely straightforward; and a year ago he would have said the same.  His yardstick for what constitutes a "stinker" is a good deal shorter than it used to be.  Makes me wonder if he can still play as well as he could relatively recently.  I have heard that musical skills persist in pwd's even when other abilities (such as dressing yourself) are long gone, but I have yet to see the evidence in Dad's case. 

-o0o-

 In Grottsville as elsewhere, the wheelie bins are colour coded.  I think it's brown for organic waste, blue for anything recyclable, black for everything else.  Brown bins go out one week, blue and black the next, alternately.   Though not everyone seems to have a black bin, Dad certainly didn't.  Don't ask me.  Grottsville Council does not have a good reputation for organising such things.  Or indeed for organising anything.

As his confusion became more apparent, Dad predictably ceased to distinguish between the two bins.  If - and it was if - he remembered to throw stuff away at all, it would land in whichever one took his fancy.  I rang the Council, explaind the situation, and you'll guess what happened next.  They arranged for him to have a black bin, so that all his rubbish would go into the one place, and a black bin was duly sent to the house.  To keep life simpler for him.  What the Council didn't do was take the other two bins away, so Dad now has three bins into which he can chuck his random selection of rubbish as the whim takes him.

-o0o-

Fruit pastilles.  What's that about?  He's got stacks of them - a dozen packets or so, sitting on a kitchen shelf; and an old tin into which he's emptied the contents of another half dozen.  I don't think I've ever seen him suck one.  There must be a memory that tells him "I like fruit pastilles",  so he buys them, and it used to be linked with another one: "to enjoy fruit pastilles, take them one from the packet and pop it in your mouth" but that connection has now gone.  So the pastilles just sit there. 

-o0o-

This links with the sense in which he forgot my birthday.  That's to say he knows when my birthday is, though he's vague as to my actual age.  But he doesn't make the connection: if someone's birthday is due, you send them a card.  That's not just remembering, it's acting appropriately on the basis of the memory, and that's the competence he's losing.

Open window, mouldy quiche

This time, when I visited Dad, the house was reasonably tidy by his current standards.  Mind, it was the day after Zoe's second session of the week so he'd hardly had time to get things messed up.  There were still the remains of a meal-for-one sitting on top of the microwave from the previous day, plus a box containing a Sainsbury's quiche which I took out and examined: it was thick with green mould.  Presumably he'd removed box from freezer quite a while back, forgotten about it and buried it.  I pointed it out to him, and as you can guess his reaction was oh yes, there's a mouldy quiche in that box, just fancy.  Would he have thrown it away had I not pointed it out?  Doubt it.  Would he have eaten it?  Of course not.  He would just have left it until someone else (usually Zoe) disposed of it for him.  In a rational person you'd decry this as the behaviour of a complete slob.  In Dad, the so-what attitude is part of his illness.

He gets around on a mobility scooter, which when not in use sits in the garage, where there's no electric socket.  If he needs to charge it, there is an extension lead which runs from a socket in the kitchen, along a worktop, through the window, across the back yard and into the garage.  When the scooter is fully charged, Dad just turns the juice off at the socket, leaving the cable in place

The garage is padlocked.  The window is open.  All the time.  Just enough to let the cable through, but it can be pulled as wide as you like, allowing access to even the plumpest of burglars.  And this is the house of my father, so careful of security he never leaves the front door unlocked nor even the key beside it.  I was aghast, told him so but I don't think my concern registered.  "Zoe's told me off about that as well", he said, matter of fact.  Women tell you off, it's what they do.  Men ignore then, it's what we do.  I tried to explain that if he was burgled, the insurance company might well refuse to cough up once they found that access had been gained by an open, unlocked, ground floor window.  I think he might have got the message but there's no guarantee it's sunk in.

The obvious solution to his problem is to get a weatherproof external socket put in an outside wall near the garage, a simple enough job for a competent electrician, but I'm not sure if Dad understands that.  I shall have to organise it myself.

Vulnerable adults, eh.  Actually, one of the crime prevention measures Dad took years ago might still stand hin in good stead. At the front of his house there's a highly visible burglar alarm box, just under the front bedroom window. It's a dummy, but apparently these work just as well in deterring villains as the real thing.  

Reality boobs again

The Hitchhiker's Guide to the Galaxy, claimed Douglas Adams, its creator, is definitive.   If it contradicts reality, so much the worse for reality.

Dad was complaining, as he trundled his trolley round Sainsbury's, that they'd shifted products round in the aisles.  Frankly I doubt this; more likely is that his mental "Hitch-hiker's Guide" was giving him its own take on reality, which failed to correspond to what was actually out there; he was remembering wrong.

I have acquired a certain reputation in the family, over the years, for planning walks that go pear-shaped.  Whenever this happens I am accused of mis-reading the map.  Not true; my map-reading skills are second to none.  But the facts on the ground often fail to correspond to the map, or - in our family version of the Adams gag - reality boobs again.  The classic example of this was the day my wife  booted me out of the house with our children for the morning and I took them on a walk in mid-Wharfedale.  I planned a little circular trot using the 1:25,000 map, detailed enough to show the stone walls, never mind major features like bridges.

I mention bridges because as we came to the end of our walk, all we had to do to get back to the lane where I'd parked the car was cross the Wharfe by the bridge clearly marked on the map, the green pecked line of the public footpath superimposed over the blue of the river.  And there, in reality, rose over the Wharfe the complete absence of any bridge whatever.  It must have collapsed many years ago, only traces of its pillars remained but no-one had thought to inform the Ordance Survey of this.

There were only two alternatives: to retrace our steps, which would have meant getting home at least an hour late with two knackered, hungry and very fractious children; or wade across the river.  This being in the days before mobile phones, I had no way of letting my wife know where we were and she'd be frantic. There had been little rain of late and the Wharfe looked as docile as it ever does, so it seemed like a no-brainer.  It was still the Wharfe, though, a notorious stretch of water at any time.  And it did occur to me as I carried the second, heavier child across the main current, my feet negotiating slimy rocks on the river bed, that with the water halfway up my thighs I was only one false step away from disaster.  I made it all right as it happened, but still got a telling off from the missus when she realised how big a risk I'd taken.

Reality boobed big time that day.  But yesterday, back in Grottsville, it boobed in a different sense that provided a kind of metaphor for early dementia.

I know the town, I was brought up there.  But that was forty years ago, since when the developers have done their worst.  There is now an Inner Ring Road, the centre is pedestrianised, once major roads have been downgraded or blocked off, new landmarks have risen like concrete fungi, and whole chunks of the place just aren't there.  The one-way system would fox the Enigma code-breakers.   All I had to do was drive to a familiar road just north of the market place.  I'd allowed myself 20 minutes; it took me an hour and what was worse, I asked for directions twice.  The first person sent me to a completely the wrong place; the second one knew how to get there on foot but if you tried in a car you quickly found yourself confronted by a row of bollards.

Think dementia.  You know your way around but reality has gone and re-arranged itself without consulting you.  You can get from A to B, but you always used to go via C - G, and C isn't there any more, D isn't the pork butchers, it's a Tesco Express, E isn't on the bus route, F is a dual carriageway where there used to be a church, and G is a dead end.  You ask someone how to get to B but they don't know where you mean or they're not native to the region or you can't fathom their accent.  You get to B in the end but it's more luck than judgement and you've no confidence you'd be able to do it again.  Having dementia is like finding your way round the town in which you grew up where only certain landmarks are where they always were, others are missing, new buildings have sprung up to accommodate new-fangled industries, and none of the roads go where you'd expect.

You have to laugh

The other day a patient identified herself as Mrs - let us say - Johnson, so I asked if she had any children.  She laughed.  "Oh no, I'm not that old."

I'm wondering if she'd taken my question to mean "have you had any children recently" and meant to say in effect "do I look young enough" but it came out the opposite.

Which sheds some light on my dad's comment earlier today; I said I would drop him close to the supermarket entrance and then find a parking space, to which his reply was "that might be easier than you think" but in a tone of voice that  implied the opposite.  He may have been intending to say "easier said than done" but it didn't come out right - the pwd's vocabulary is always letting the side down.  You have to listen to the tone of voice rather than the actual words; and as the condition intensifies you often find yourself responding to the emotion in the patient's utterances with words that make no more sense to you than to him/her, and it doesn't matter.  It's almost like making music with them, an exchange of feeling rather than thought.

So what do I make of this one?  Responding to my lively demeanour on the ward - I'd been having a laugh with one of the healthcare assistants, this old chap said "there are some people who just bounce around, I don't know why.  Are they Welsh?"  I said "I don't think so - I bounce around sometimes and I'm not Welsh."  "Oh well," he said, "that's some consolation."

On the face of it, that's straight out of Reeves and Mortimer.  But the man was trying to communicate something, and maybe it was: whatever quality it is that makes people "bounce around" might not be one that you would wish to have.  But you don't have it, so that's good.  To be Welsh is to be foreign, in some way alien, and I'm not, I'm "normal".  I might be over analysing the language here.  Reduced to its basic emotions, our conversation went: Old man: something is puzzling me.  Me to old man; Well you needn't be puzzled, everything is fine.  Old man:  Thank you, that's kind.

But it was still a wonderfully bizarre moment.

The cancer story

Dad's younger brother died of cancer in his fifties.  Not long afterwards Dad himself took early retirement - this was back in the days when men were sometimes offered packages they would have been fools to refuse.  For some reason these two facts have got linked in his mind as cause and effect.  His brother died of cancer, which meant that he had to retire?  No, I don't get it either.  Dad reckons his brother contracted the disease because of stress: well, it's true he had a quite high-powered job, but so do lots of people.  Dad's own job wasn't particularly stressful so why should he be any more prone to cancer himself?  Anyway, the narrative is now fixed in his memory.

What's more, it keeps coming out.  Every week my sister in law drives him to Sainsbury's, does her shopping, waits a no doubt unconscionable length of time while he does his, drives him home again.  She's good like that, but her two complaints are 1] he pongs of wee - to which unsavoury subject I must return and 2] she keeps hearing the same stories.  One week Dad told her, not for the first time, about his brother's cancer on the way to Sainsbury's.  Then there was an appeal for some cancer charity at the supermarket, so whaddyer know: she got the same story again on the way home, with no memory that he'd already told her, earlier that morning.

So far, so typical of dementia.  Here's the weird bit.  This week I was down in Grottsville, visiting Dad on what was his normal shopping day and we'd agreed I would drive the three of us to Sainsbury's.  So this time I got the cancer story, but as if he was telling my sister in law - who if she were hearing it for the first time could not have been expected to know.  Dammit I'm family, and I do know.  What's more, I shared in the conduct of my uncle's funeral with the local minister.  Dad remembered that, and told me that "Peter" (that's me) "helped to take my brother's funeral."  He talked to me, about me, as if I was an absent third party.  In that moment he neglected to register who I was. 

In the later stages of dementia, sufferers forget their own family members.  Dad's a long way off that yet but this was a chilling taster for what may yet be to come.

Singing with pwd's

Part of my job involves carting my allegedly portable keyboard around day centres and wards and engaging service users in singing.  I try not to "entertain" them - other people can do that.  My concern is more therapeutic: I'm trying to get these folk to respond to songs in ways that enhance their well-being, at least for the moment.  Outcomes vary, but one learns by trying things out and responding to feedback from both the client group itself and from staff. 

You don't have to be working in this field for long to realise how deeply ingrained are older people's memories of songs they've grown up with.  It can be deeply moving to hear folks burst into song who may otherwise have lost the use of language.

I've produced a large-print folder of songs which I give out to particpants and keep adding to as time permits, as ideas occur to me and in response to requests.  If I need to learn something new I will listen to it a few times on Utube, work out the chords and I'm away - don't need a printed score, and it's rare that a chord sequence defeats me.  (One of these days I will get "The Girl from Ipanema" licked.)  I can stand at the keyboard, let my fingers make the music while keeping eye contact with the audience/participants.  Sometimes I'll set the machine rhythms going, and finger the chords, which means I can play with one hand and gesticulate with the other. Feels like cheating but hey.

Although a bunch of older people will sing along merrily enough to wartime songs, many of them only relate to them in the way I do - they heard their parents singing them.  They'll have memories of "community singalongs" with Uncle Bert at the honky-tonk.   They know "Somewhere over the Rainbow" because everybody has seen "The Wizard of Oz".  But we're talking about a generation for which that was already an "old film" when they were children.  They're wartime babies, or boomers.  Their own music may well fifties and sixties stuff, rock and roll, Elvis, the Beatles.   They might remember Abba because their kids loved them; they know the great show songs - the Rogers and Hammerstein musicals, "Oliver", "My Fair Lady", and maybe even Andrew Lloyd Blithering Webber.  (Sometimes one has to suffer for one's art.) 

You have to cover a wide range and get a feel for the group's mood on the day.  The presence or absence of one particular member might make all the difference: I'm thinking of one lady who clearly used to jive, so if she's there we'll have Da Doo Ron Ron Ron and Rock Around the Clock and she'll be dancing with a care worker.  Other weeks everyone seems a bit sleepier so I'll go for Just a Song at Twilight and Danny Boy.

The key to an activity in which you are aiming to get pwd's singing is very simple and just about foolproof: you need staff and carers to be engaging with the service users/patients.  If they are on board, you have a therapeutic intervention: if they're not, you are a performer and the audience is cast in a passive mould.  There's a centre I visit where this is completely understood.  When I arrive, the percussion instruments will be out, there will be something like a 1:3 staff/service user ratio, which is about right.  It means that staff can look out for those who don't naturally respond to the songs, who can't find the right place in the book, who need encouragement to bash their tambourines and generally be drawn into the activity. 

At the other extreme I worked, supporting the professional singer who leads the overall project, in a care home setting. (I'll call her Val and she's going to pop up later.)  Here you can expect the dementia to be more extreme and staff really need to earn their crust.  Well, the staff had been told they needed to be in the room and they were, but you needed no expertise in body language to recognise that two or them at least were there very much on sufferance and could not abide all these antiquated sentimental dirges.  And guess what, the residents just slouched in their chairs and barely responded to the music at all.