A choice of life and death

As part of a se­ries on the eu­thana­sia ref­er­en­dum, Han­nah Martin looks at where var­i­ous sides stand on the de­bate.

The Press - - In Depth -

The topic of as­sisted dy­ing or vol­un­tary eu­thana­sia has long been de­bated in New Zealand, and is fraught with emo­tion on both sides.

Those op­posed say as­sisted dy­ing weak­ens so­ci­ety’s re­spect for the value and im­por­tance of hu­man life and can lead to worse care for the ter­mi­nally ill. Ar­gu­ments in sup­port of it say it is a per­son’s right to choose when and how they die, and eu­thana­sia af­fords them the right to die with dig­nity.

On Septem­ber 19, New Zealan­ders will get to vote on a piece of leg­is­la­tion which would al­low el­i­gi­ble ter­mi­nally ill adults the op­tion to re­quest med­i­ca­tion that would end their life, through as­sisted dy­ing.

Here we break down some of the main ar­gu­ments posed by those on both sides of the End of Life Choice Act de­bate.

As­sisted dy­ing, or eu­thana­sia, is de­fined in the act as a doc­tor or nurse prac­ti­tioner giv­ing a per­son med­i­ca­tion to re­lieve their suf­fer­ing by bring­ing on death, or the tak­ing of med­i­ca­tion by a per­son to re­lieve their suf­fer­ing by bring­ing on death.

It is cur­rently il­le­gal in New Zealand, and is con­sid­ered ‘‘aid­ing and abet­ting sui­cide’’ un­der Sec­tion 179 of the Crimes Act (1961).

Un­der the cur­rent law, those who com­mit the of­fence of as­sist­ing or en­cour­ag­ing some­one to take their life can face time in pri­son – re­gard­less of whether a sui­cide at­tempt is made or not.

To be el­i­gi­ble for as­sisted dy­ing un­der the pro­posed act, a per­son must be suf­fer­ing from a ter­mi­nal ill­ness that is likely to end their life within six months. They must have sig­nif­i­cant and on­go­ing de­cline in phys­i­cal ca­pa­bil­ity, and ex­pe­ri­ence un­bear­able suf­fer­ing that can­not be eased.

A per­son would not be el­i­gi­ble if the only rea­son is that they are suf­fer­ing from a men­tal dis­or­der or men­tal ill­ness; have a dis­abil­ity of any kind; or are of ad­vanced age.

It’s a po­lar­is­ing topic: more than 39,000 peo­ple made sub­mis­sions on the End of Life Choice Bill be­fore it was passed by MPs.

A re­cent Univer­sity of Otago pa­per on 26 stud­ies into New Zealan­ders’ eu­thana­sia views over the past two decades found 68 per cent were in sup­port, nearly 15 per cent in op­po­si­tion and the re­main­der un­sure.

‘Choice, con­trol, com­pas­sion’

Many in sup­port of as­sisted dy­ing be­lieve peo­ple should have the choice to die with dig­nity, on their own terms, with­out the threat of break­ing the law.

Former hospice physi­cian and pal­lia­tive care spe­cial­ist Dr Libby Smales says what the leg­is­la­tion re­ally of­fers – and why the Yes for Com­pas­sion spokes­woman is in sup­port of it – is choice.

Yes for Com­pas­sion be­lieves ter­mi­nally ill New Zealan­ders should have choice and con­trol at the end of their lives, in­clud­ing the op­tion of re­quest­ing life-end­ing med­i­ca­tion.

The group was formed to ‘‘make sure the pub­lic is wellinform­ed about the leg­is­la­tion’’ ahead of the vote in Septem­ber, and states that its col­lec­tive ex­per­tise spans med­i­cal, le­gal, po­lit­i­cal, Ma¯ ori and re­li­gious per­spec­tives.

They say the law would give peo­ple with ter­mi­nal ill­ness con­trol of how, when and where they die; at home, with loved ones around them, ‘‘avoid­ing pro­longed and painful deaths’’ – giv­ing them back the con­trol their ill­ness has taken away.

They say choice is ‘‘re­ally, re­ally im­por­tant’’ for those whose dis­ease or life has be­come un­ten­able and ‘‘want to dodge the rest of the hor­ror’’, Smales says.

‘‘Peo­ple for­get the act and as­sisted dy­ing is vol­un­tary . . . for most peo­ple it won’t be nec­es­sary.

‘‘This leg­is­la­tion would make a real dif­fer­ence to peo­ple fac­ing a ter­ri­ble fate’’, al­low­ing them dig­nity in death that they may other­wise be robbed of, Smales says.

The im­por­tance of choice is echoed by the End of Life Choice So­ci­ety, an ad­vo­cacy or­gan­i­sa­tion seek­ing a law change to al­low as­sisted dy­ing.

Pres­i­dent Mary Panko says choice is ‘‘ab­so­lutely fun­da­men­tal’’ to the act, as the con­ver­sa­tion about as­sisted dy­ing should come down to what an in­di­vid­ual pa­tient wants.

If a per­son went to their GP or into hospi­tal with a prob­lem they may be pre­sented with a range of op­tions – which­ever treat­ment or path they pur­sue is their choice.

‘‘We ab­so­lutely be­lieve peo­ple in the last stages of their lives should have that choice too.’’

Panko says data in the United States show, on av­er­age, those ac­cess­ing as­sisted dy­ing typ­i­cally shorten their lives by just 10 days – a re­prieve, in­stead of ‘‘en­cour­ag­ing peo­ple to just hang on’’.

Un­der the sta­tus quo, many who are ‘‘des­per­ately’’ ill are ter­mi­nally se­dated with­out any say in the mat­ter – it is of­ten the doc­tors’ choice or the fam­ily’s choice, Panko says.

Ninety-five per cent of the pop­u­la­tion will never need the act or be el­i­gi­ble, but pass­ing it into law would al­low the de­ci­sion to be made by those few who do, she says.

‘‘Risk to the vul­ner­a­ble’’

On the other hand, many of those op­posed to as­sisted dy­ing be­lieve le­gal­is­ing eu­thana­sia would place pres­sure on vul­ner­a­ble peo­ple – those with dis­abil­i­ties, men­tal health is­sues and ter­mi­nal ill­ness – to ac­cess as­sisted dy­ing for fear of be­ing a fi­nan­cial, emo­tional or care bur­den on oth­ers.

Pal­lia­tive care con­sul­tant Dr Sinead Don­nelly is the deputy chair of Care Al­liance, an um­brella group of or­gan­i­sa­tions, in­clud­ing the ma­jor providers of pal­lia­tive care, which be­lieves the le­gal­i­sa­tion of eu­thana­sia and as­sisted sui­cide is ‘‘un­nec­es­sary, un­safe and un­wise’’.

They be­lieve the act puts ‘‘vul­ner­a­ble [peo­ple] at risk’’ of co­er­cion – of­ten ‘‘very sub­tle’’ and which doc­tors are not trained to de­tect, Don­nelly says.

Un­der the act, two doc­tors are re­quired to sign off the pro­ce­dure, but they don’t need to have had any long­stand­ing re­la­tion­ship with or prior knowl­edge of the per­son.

The group also op­poses that a per­son could be el­i­gi­ble un­der the act with­out see­ing a psy­chi­a­trist to as­sess whether they could sim­ply ben­e­fit from men­tal health sup­port in­stead, Don­nelly says.

The act al­lows for a psy­chi­a­trist to be con­sulted if the

two doc­tors are not sat­is­fied.

The group is con­cerned an older per­son who feels they are a bur­den on their fam­ily will turn to as­sisted dy­ing as an op­tion ‘‘not for the right rea­sons’’, and a doc­tor with lit­tle pal­lia­tive care train­ing or un­der­stand­ing ‘‘would feel the an­swer could be eu­thana­sia’’.

Don­nelly says the act has ‘‘so many holes in it . . . mak­ing it dan­ger­ous for vul­ner­a­ble peo­ple’’. ‘‘Even if you philo­soph­i­cally sup­port as­sisted dy­ing, this act should not be the one [leg­is­lated].’’

Those op­posed also say the bill is a ‘‘step into the un­known’’ for New Zealan­ders with dis­abil­i­ties.

Groups such as De­fendNZ say the avail­abil­ity of as­sisted dy­ing could leave those el­i­gi­ble feel­ing ‘‘they now have to jus­tify . . . the ex­pense of keep­ing them alive, and why they’re putting their fam­ily and care­givers through the bur­den of car­ing for them’’.

‘‘Cur­rently, it is uni­ver­sally ac­cepted that sick, dis­abled and el­derly peo­ple are cared for un­til their nat­u­ral death. The avail­abil­ity of as­sisted dy­ing as a le­gal op­tion would make stay­ing alive op­tional, in­stead of the de­fault po­si­tion we have at the mo­ment,’’ it says.

‘‘Sooth­ing suf­fer­ing’’

Smales, who di­rected a Napier hospice for 20 years, says even with ex­cel­lent pal­lia­tive care, some New Zealan­ders still suf­fer ‘‘un­bear­ably’’ at the end of their life.

While New Zealand doesn’t have its own fig­ures, Aus­tralian re­search found be­tween 5 and 6 per cent of pa­tients still suf­fer ‘‘ter­ri­bly’’ in a way a med­i­cal team can’t al­le­vi­ate, in spite of good pal­lia­tive care. ‘‘Peo­ple talk about this hap­pen­ing in small num­bers, but if you’re one of them, they don’t ap­pear small.’’

Suf­fer­ing isn’t just pain, she says, it is en­tire bod­ily sys­tems fail­ing: your bow­els, your breath­ing.

Re­liev­ing this suf­fer­ing is an­other main ar­gu­ment those in sup­port of as­sisted dy­ing hold.

Smales says she has heard many mov­ing sto­ries about those who chose to have a ‘‘quiet, peace­ful, planned death’’ ver­sus those ‘‘lonely, vi­o­lent deaths’’ of those who are suf­fer­ing.

She says a dif­fi­cult death can cast a long shadow – ‘‘it is ter­ri­ble for the per­son dy­ing and tor­ture for their fam­ily’’.

‘‘This leg­is­la­tion will make a big dif­fer­ence to peo­ple who are fac­ing a ter­ri­ble fate.’’

How­ever, re­liev­ing suf­fer­ing by end­ing a per­son’s life is some­thing many doc­tors – in­clud­ing those work­ing in pal­lia­tive care – say is at odds with why they are in the pro­fes­sion.

‘An ero­sion of trust’

Or­gan­i­sa­tions such as Hospice New Zealand state that good pal­lia­tive care is founded on a ‘‘trust­ing re­la­tion­ship’’ be­tween a pa­tient, their fam­ily, wha¯ nau and health pro­fes­sional. This re­la­tion­ship is ‘‘un­der­mined’’ by eu­thana­sia, they say.

This was echoed by close to 1600 New Zealand doc­tors who have signed their names to an open let­ter in op­po­si­tion of as­sisted dy­ing, ti­tled Doc­tors Say No.

The group, led by Don­nelly, states it is ‘‘com­mit­ted to the con­cept of death with dig­nity and com­fort, in­clud­ing the pro­vi­sion of ef­fec­tive pain re­lief and ex­cel­lence in pal­lia­tive care’’.

It ar­gues proper pal­lia­tive care makes eu­thana­sia un­nec­es­sary, and says giv­ing proper pain re­lief in pal­lia­tive care, even if it may has­ten the death of a ter­mi­nally ill pa­tient, is eth­i­cal and le­gal.

‘‘We be­lieve that cross­ing the line to in­ten­tion­ally as­sist a per­son to die would fun­da­men­tally weaken the doc­tor-pa­tient re­la­tion­ship, which is based on trust and re­spect,’’ the open let­ter states.

Doc­tors also ex­pressed con­cern about the six-month pe­riod de­scribed in the act, say­ing prog­no­sis is ‘‘in­formed guess­work’’ rather than an ex­act science.

Univer­sity of Auck­land pro­fes­sor and pal­lia­tive care spe­cial­ist Rod Ma­cleod says he has cared for 15,000 pa­tients in his more than 30-year ca­reer, none of whom ‘‘I’ve thought would be bet­ter off dead’’.

‘‘But I’ve had plenty who have asked.’’

Ma­cleod, Hospice New Zealand’s clin­i­cal ad­viser, says the or­gan­i­sa­tion – which rep­re­sents all hospice ser­vices in the coun­try – be­lieves eu­thana­sia has no place in pal­lia­tive care.

Those who ask for eu­thana­sia are of­ten at the be­gin­ning of their pal­lia­tive care jour­neys, and feel hope­less or afraid – fear­ing loss of dig­nity or be­ing a bur­den. Once they get the sup­port they need, those re­quests for ‘‘early death’’ fade away, he says.

Ma­cleod is ‘‘never sur­prised’’ when peo­ple say they no longer ‘‘want to live like this’’, but says pal­lia­tive care can change the way peo­ple live with­out the need to has­ten death.

He says it is the role of so­ci­ety to pro­tect the ‘‘most vul­ner­a­ble’’, while as­sisted dy­ing leg­is­la­tion would give them the ‘‘per­cep­tion there are lives not worth liv­ing’’.

‘‘The avail­abil­ity of as­sisted dy­ing ... would make stay­ing alive op­tional ...’’


Ninety-five per cent of the pop­u­la­tion will never need the End of Life Choice Act or be el­i­gi­ble, but pass­ing it into law would al­low the de­ci­sion to be made by those few who do, says End of Life Choice So­ci­ety pres­i­dent Mary Panko. The act has ‘‘so many holes in it . . . mak­ing it dan­ger­ous for vul­ner­a­ble peo­ple’’, says Dr Sinead Don­nelly, a pal­lia­tive med­i­cal spe­cial­ist.

Once the ter­mi­nally ill get the sup­port they need, re­quests for an ‘‘early death’’ fade away, says Hospice NZ clin­i­cal ad­viser Pro­fes­sor Rod Ma­cleod.

Former hospice physi­cian Dr Libby Smales says the act ‘‘would make a real dif­fer­ence to peo­ple fac­ing a ter­ri­ble fate’’.

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