Tell peo­ple how you want to die. It is im­por­tant

If you feel strongly enough about your pref­er­ences at the end of life, it is im­por­tant you tell peo­ple, says re­searcher Prof Jenny Kitzinger

The Irish Times - Tuesday - Health - - Front Page - Sheila Way­man

Prof Jenny Kitzinger has a pho­to­graph of her sis­ter Polly giv­ing a talk about the right of par­ents to be heard, taken on the morn­ing of March 30th, 2009. She was an ad­vo­cate for peo­ple who had lost the men­tal ca­pac­ity to make their own de­ci­sions.

A few hours later, those rights dis­ap­peared in an in­stant for Polly her­self. That was at the mo­ment of a “head-on car crash”, says Jenny. “And they have never been re­stored to her.”

Polly suf­fered cat­a­strophic brain in­juries in the ac­ci­dent, near Bre­con in Wales. Now aged 55, she is pro­foundly men­tally and phys­i­cally dis­abled, re­quires 24/7 care and is not in law ca­pa­ble of mak­ing her own de­ci­sions. If the wishes she had made known long be­fore be­com­ing in­ca­pac­i­tated had been re­spected, cer­tain med­i­cal in­ter­ven­tions would have been with­held and, Jenny says, Polly “would no longer be with us in body”.

“What she ended up trapped in, is so not what she would have wanted,” Jenny stresses. Un­usu­ally, it’s not as if they hadn’t talked at length about such mat­ters. The sis­ters shared a pas­sion­ate, pro­fes­sional in­ter­est in med­i­cal ethics – Polly through her ad­vo­cacy work and Jenny, who was al­ready run­ning a re­search cen­tre look­ing at de­ci­sion-mak­ing at the edge of tech­nol­ogy.

Un­for­tu­nately for Polly and all her fam­ily, she never put her wishes in writ­ing. If she had drawn up an Ad­vanced De­ci­sion doc­u­ment – pop­u­larly still re­ferred to as a “liv­ing will” – about the cir­cum­stances in which she would or would not want life-pro­long­ing treat­ments, Jenny knows from all the con­ver­sa­tions they had that it would have in­cluded re­fus­ing a feed­ing tube for the first two years af­ter her in­jury.

“She was very clear about what she wanted; she told us. She thought that was enough and it wasn’t.

“Had she put what she wanted in writ­ing and [got] a wit­ness sig­na­ture, her wishes would have been re­spected.”

The clar­ity with which Polly had ex­pressed her views about such mat­ters be­fore her car crash “makes the irony, the pain, the guilt and dis­tress where we are, and where we have been for eight years, Kafkaesque, sur­real”, says Jenny. “It doesn’t fit with my un­der­stand­ing of hu­man rights or for her as an in­di­vid­ual. So I des­per­ately wish she would have put her wishes in writ­ing so that it would have been eas­ier to de­fend them.

“And I des­per­ately wish that the doc­tors who treated my sis­ter had had a bet­ter un­der­stand­ing of ‘best in­ter­est’ de­ci­sion-mak­ing so that they could have re­spected her wishes. Even though it wasn’t in writ­ing, there was am­ple ev­i­dence from all her fam­i­lies and friends about what her wishes were.”

In the midst of this very per­sonal tragedy Jenny, who is pro­fes­sor of com­mu­ni­ca­tions re­search at Cardiff Univer­sity and de­scribes her­self “as a re­searcher through and through”, looked to find an­swers in the only way she knew. Along with an­other of her sis­ters, Celia, also a univer­sity pro­fes­sor, they ap­plied them­selves to re­search.

At the out­set they won­dered was it the par­tic­u­lar per­son­al­i­ties and be­liefs of the doc­tors they en­coun­tered that were re­spon­si­ble for over-rid­ing Polly’s wishes, as tes­ti­fied to by her fam­ily, or was it the sys­tem? The pic­ture of a much more wide­spread prob­lem started to emerge.

“Any per­sonal story could be the prompt for re­ally bad rec­om­men­da­tions for poli­cies,” points out Jenny, who is to be the key­note speaker at a fo­rum on end of life in Dublin in Oc­to­ber. Whereas eight years of re­search is the solid foun­da­tion for the ad­vice of her and Celia to the pow­ers-that-be.

There’s a groundswell on this is­sue within health­care and the public, Jenny re­ports. Some clin­i­cians are trou­bled by what they are see­ing as peo­ple are saved “at the mar­gins of a qual­ity of life they might not have con­sid­ered worth liv­ing” and by the “very heroic and bru­tal in­ter­ven­tions” used to sus­tain that life.

As co-directors of the York-Cardiff Chronic Dis­or­ders of Con­scious­ness Re­search Cen­tre, the Kitzingers have also in­ter­viewed al­most 100 fam­ily mem­bers of pa­tients with dev­as­tat­ing brain in­juries who have been in a veg­e­ta­tive state or min­i­mally con­scious for some time.

“Some of those be­lieve on­go­ing treat­ment is right, cer­tainly for the first few years, and quite a lot, es­pe­cially af­ter a few years, think on­go­ing treat­ment is not right. It is com­mon for them to say ‘if only they had writ­ten an Ad­vance De­ci­sion . . .’ and they are much more likely to have writ­ten an Ad­vance De­ci­sion them­selves.”

The Kitzinger sis­ters – five of them in to­tal – were never ones to allow “the sys­tem” to make un­think­ing choices for them­selves or for oth­ers. As the daugh­ters of child­birth expert Sheila Kitzinger, who rev­o­lu­tionised at­ti­tudes to­wards the male-dom­i­nated ma­ter­nity sys­tem, it was in their blood not to take the sta­tus quo for granted. And with their fa­ther, Uwe, an Ox­ford don who had come to Eng­land as a child refugee from Nazi Ger­many and who did a lot of work on be­half of refugees, the sis­ters grew up in a po­lit­i­cal house­hold with a keen sense of hu­man rights.

Celia was a key player in the in­tro­duc­tion of equal mar­riage in the UK, af­ter she and Sue Wilkin­son took the gov­ern­ment to court in 2006 to recog­nise their 2003 mar­riage in Van­cou­ver. Now, Celia and Jenny’s work on pro­mot­ing peo­ple’s rights at the end of life mir­rors their mother’s ad­vo­cacy.

“Sheila cam­paigned for women’s con­trol over their bod­ies at the be­gin­ning of life and Celia and I are, I guess, work­ing for peo­ple’s con­trol over their bod­ies at the end of life,” she says.

They co-au­thored a re­port for the Welsh gov­ern­ment on in­creas­ing the un­der­stand­ing and up­take of Ad­vance De­ci­sions and it is on this topic Jenny will be speak­ing here, where such doc­u­ments are known as Ad­vance Health­care Di­rec­tives (see sidebar). Al­though she wants to raise aware­ness about them, that does not mean she thinks every­one should have one.

“That is an im­por­tant dis­tinc­tion; to know it is not the right tool for some peo­ple and it is the right tool for oth­ers.” There are pros and cons – you won’t have all the facts when com­pil­ing it, she points out. While some peo­ple are con­fi­dent they know what they would want if they were to be in a coma, a veg­e­ta­tive state, or min­i­mally con­scious, oth­ers be­lieve in putting their fate in the hands of their God or their doctor.

“It looks like that, if well pub­li­cised, about one in three peo­ple wants them and yet the up­take is only about 4 per cent.”

Al­though even­tual death is the one cer­tainty in life, peo­ple are still re­luc­tant to talk about it, let alone pre­pare for it. Even peo­ple who are pru­dent enough to make wills and set aside money for fu­neral costs may baulk at mak­ing con­tin­gency plans for the un­palat­able thought of be­ing still alive but in­ca­pac­i­tated.

“We talk a lot about peo­ple not want­ing to talk about death but I think there is a sec­ond prob­lem – peo­ple not want­ing to lis­ten to peo­ple talk about death,” says Jenny. Re­search has shown that it’s quite com­mon for peo­ple over 70 be­ing more will­ing to raise the sub­ject, only to be hushed by their adult chil­dren.

“We need to be hon­est and coura­geous and lis­ten and not shut peo­ple up,” stresses Jenny who, along with the rest of her fam­ily “did our damn­d­est” to en­sure their mother had the “good death” she wanted – at home – last year at the age of 86. Hav­ing pi­o­neered the con­cept of birth plans to sup­port women in gain­ing more au­ton­omy and choice, Sheila had a death plan for her­self.

Al­though able to com­mu­ni­cate her wishes her­self right up to the last few days, her Ad­vance De­ci­sion spec­i­fied she wanted what­ever quan­tity of drugs were nec­es­sary to keep her free from pain and dis­tress, even if that has­tened her death; if there was no prospect of re­cov­ery she did not want to be kept alive by ar­ti­fi­cial means and she did

not want to be trans­ferred to hos­pi­tal.

Al­though know­ing their mother had the man­ner of death she wanted made the fam­ily “more at peace with the grief”, Jenny has no wish to hold home death up as an ideal. To do so, she be­lieves, is to ig­nore peo­ple who don’t have so­cial sup­port at home, to ig­nore how hard it can be and how some peo­ple have symp­toms that can’t be man­aged at home.

She is grate­ful to the NHS for overnight care work­ers who came in to give them respite and made it bear­able and doable at the end for Sheila.

In the eight years since Polly’s ac­ci­dent, Jenny be­lieves that, in the event of a cat­a­strophic brain in­jury, the sit­u­a­tion around try­ing to do what a per­son would have wanted has im­proved.

“There is some good case law that says ob­vi­ously an Ad­vanced De­ci­sion helps and is bet­ter but, if there isn’t one, that should not com­pletely si­lence the per­son.”

It’s not that UK leg­is­la­tion needs to be changed, but to be im­ple­mented. “It is called the Men­tal Ca­pac­ity Act 2005,” she says, plac­ing heavy em­pha­sis on the year, “it should no longer be bed­ding down.

“I think there is a prob­lem with med­i­cal pa­ter­nal­ism. There is a prob­lem with doc­tors think­ing that their med­i­cal judg­ment is the same as a best-in­ter­est de­ci­sion,” she con­tin­ues.

“A clin­i­cal judg­ment is what you judge to be the ef­fec­tive­ness of a treat­ment and the side ef­fects. A best-in­ter­est de­ci­sion is whether that per­son would have wanted that treat­ment, given your clin­i­cal judg­ment about the side-ef­fects and the ef­fec­tive­ness – and that is a cru­cial dis­tinc­tion.

“We have to fine-tune per­son-cen­tred care and put in the time and train­ing to de­liver good care. I think it takes more wis­dom to know when not to act than it does when to act.”

Ev­ery day Jenny wishes Polly was at peace. “I see her as be­ing held hostage to a sys­tem that does not un­der­stand her val­ues, wishes and be­liefs. There is no way of pro­tect­ing them.

“There was some­thing ex­tra­or­di­nary about my brave, opin­ion­ated, stub­born, lovely sis­ter who had such clear views on how she lived her life, ac­cord­ing to her own pas­sion, be­liefs – to see that all stripped away from her. . .”

Prof Jenny Kitzinger will be the key­note speaker at the “Your Life, Your Death, Your Say” fo­rum in Dublin Cas­tle on Oc­to­ber 10th. More in­for­ma­tion and book­ing on hos­pice­foun­da­

Al­though even­tual death is the one cer­tainty in life, peo­ple are still re­luc­tant to talk about it, let alone pre­pare for it Right: Polly and Jenny Kitzinger af­ter a suc­cess­ful day gar­den­ing in 2008

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