Why we need to think now about end-of-life care

Hav­ing a ‘ liv­ing will’ isn’t enough, says Prue Leith. You have to make sure the peo­ple who keep you alive know about its ex­is­tence

The Oldie - - CONTENTS - Prue Leith

When my Mama was dy­ing in her own home, she was gen­er­ally con­tent in the knowl­edge that she’d be al­lowed to get on with it with­out med­i­cal in­ter­fer­ence. She’d cir­cu­lated her ‘liv­ing will’ (now called an Ad­vance De­ci­sion to Refuse Treat­ment) to all the fam­ily and sent it to her doc­tor and lawyer.

But she very nearly didn’t get her way. On the day she died, in 2010, her won­der­ful pro­fes­sional carer, Ali­son, who’d looked after her for years, was sit­ting by her bed, stroking her hand as she slept. Ali­son, who’d seen a good few pa­tients through this fi­nal rite of pas­sage, cor­rectly read the signs of chilly hands, ir­reg­u­lar pulse and laboured breath­ing of im­pend­ing death. She knew it would be soon.

And then the worst hap­pened. Ev­ery evening, so­cial ser­vices pro­vided half an hour’s ex­tra help for Ali­son to get my mother un­dressed, washed and into bed. Usu­ally, the care as­sis­tants sent to do this job knew my mother’s wishes. But this evening, the woman who came had never been be­fore. Tak­ing one look at the pa­tient and re­al­is­ing she was in extremis, she walked to the liv­ing room and di­alled 999. Ali­son tried to stop her but did not want to leave my Mum, nor shout too loudly and dis­turb her.

When the paramedics ar­rived, my mother was al­ready un­con­scious and Ali­son begged them to leave her be. But paramedics are trained to keep peo­ple alive; not stand by while they die.

Mer­ci­fully, my Mama, a for­mer pro­fes­sional ac­tress, knew a thing or two about ex­its and en­trances, and died be­fore they’d un­packed their gear.

Had she not thus thwarted the du­ti­ful and ef­fi­cient paramedics’ in­ten­tions, she’d have been sub­jected to the very in­ter­ven­tions she didn’t want: re­sus­ci­ta­tion, be­ing carted off to hos­pi­tal, and prob­a­bly to fur­ther well-mean­ing at­tempts to keep her in this world.

My hus­band died in hos­pi­tal in 2002, and in his last three weeks, though ev­ery­one knew he was dy­ing, he went through sev­eral of these brave, but mis­guided, pro­ce­dures. Once he was cling­ing to my hand, but I was pushed out of the way be­cause the medics needed the space for CPR, to give him adrenalin jabs, to keep him alive at any cost.

There are no easy an­swers. It’s a para­medic’s and a doc­tor’s job to save life. But at what cost? If they are only de­lay­ing the in­evitable and do­ing so in op­po­si­tion to the pa­tient’s wishes, it’s mad, surely?

The Ad­vance De­ci­sion (formerly the ‘liv­ing will’) has be­come more wide­spread as peo­ple be­come aware of how aw­ful dy­ing can be. But I fear that, though writ­ing and reg­is­ter­ing a liv­ing will may make you feel bet­ter, in the be­lief that you won’t have the pain and in­dig­nity of re­peated med­i­cal in­ter­ven­tions, that doc­u­ment is no guar­an­tee of a good death.

If you have a stroke or heart at­tack or are knocked un­con­scious and are un­able to point to the where­abouts of your Ad­vance De­ci­sion, you have a prob­lem.

Even ‘Do Not Re­sus­ci­tate’, tat­tooed on your back and chest, is un­likely to wash with the am­bu­lance guys. Once in hos­pi­tal, there’s a very thin chance of the docs on duty know­ing about your Ad­vance De­ci­sion, let alone lo­cat­ing it or act­ing on it. Jerk­ing on a bed at the mercy of a de­fib­ril­la­tor, or be­ing pum­melled and pushed and man­han­dled onto a trol­ley and into an oper­at­ing the­atre could be your fate.

But help may be round the cor­ner. Ad­vance De­ci­sions, prop­erly reg­is­tered, now have the force of law, at least in Eng­land and Wales. Medics can be taken to court if they do not obey your in­struc­tions. But they can­not be blamed if they haven’t seen them. A liv­ing will in a lawyer’s files is no good at all. Even pinned to the in­side of a front door, it is likely to be missed.

There are some good ideas about: you could carry a No­tice of Ad­vance De­ci­sion from com­pas­sionindy­ing.org.uk – prefer­ably on a lan­yard round your neck, so it’s un­likely to be missed. This will alert medics to the ex­is­tence of your in­struc­tions.

Or you could get an elec­tronic pen­dant or bracelet, op­ti­misti­cally de­scribed as jew­ellery, from med­i­calert.org.uk, which will bring up the de­tails of your Ad­vance De­ci­sion. And/or you can in­sist your Ad­vance De­ci­sion is in­cluded in the sum­mary care record on file at your doc­tor’s surgery and at the hos­pi­tal.

But ul­ti­mately, un­less the NHS es­tab­lishes a na­tion­wide reg­is­ter of Ad­vance De­ci­sions and makes check­ing the reg­is­ter com­pul­sory be­fore re­viv­ing a pa­tient close to death, liv­ing wills are a guar­an­tee of noth­ing.

Sadly, just as we need to make as­sisted dy­ing le­gal for ter­mi­nally ill, com­pos men­tis pa­tients, we need to leg­is­late to en­sure a sane pa­tient’s de­sires about their end-of-life care over­ride our ‘doc­tor knows best’ cul­ture.

‘Jerk­ing on a bed at the mercy of a de­fib­ril­la­tor could be your fate’

‘On the fore­head, please’

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