Proper end-of-life care would avoid this so­cial ex­per­i­ment

Crit­ics of Vic­to­ria’s as­sisted dy­ing bill say it fails to pro­tect the vul­ner­a­ble

The Weekend Australian - - INQUIRER - PAUL KELLY

The so­cially ex­per­i­men­tal state of Vic­to­ria, af­ter a flawed process, pro­poses its gravest ex­per­i­ment — to al­low doc­tors to ter­mi­nate the lives of pa­tients, thereby cre­at­ing in law two classes of hu­man be­ings, those whose lives should be pre­served and those “bet­ter off dead”.

The line between th­ese two cat­e­gories, con­trary to claims of Vic­to­ria’s eu­thana­sia ad­vo­cates, is highly ar­bi­trary. Com­mon sense, po­lit­i­cal re­al­ity and in­ter­na­tional ex­pe­ri­ence tes­ti­fies to the truth — once killing and as­sisted sui­cide is au­tho­rised ac­cord­ing to cer­tain rules the mo­men­tum to ex­pand those rules be­comes re­lent­less, lead­ing to in­creased num­bers be­ing ter­mi­nated.

Re­flect for a mo­ment and ask your­self: do you ac­tu­ally doubt this would hap­pen? The Vol­un­tary As­sisted Dy­ing Bill in­tro­duced into the Vic­to­rian par­lia­ment by Health Min­is­ter Jill Hen­nessy is shot full of holes. In a sense this is not the fault of eu­thana­sia’s ad­vo­cates.

The real prob­lem lies in the utopi­anism of the project and the im­pos­si­ble goals it pur­ports to achieve. We are ex­pected to be­lieve the law can au­tho­rise killing and as­sisted sui­cide in the name of com­pas­sion yet at the same time some­how pro­tect the vul­ner­a­ble, the de­pressed, the poor and those anx­ious to “do the right thing by their fam­ily” from un­nec­es­sar­ily nom­i­nat­ing them­selves for the fi­nal poi­son.

The key to the pol­i­tics of eu­thana­sia lies in ac­cept­ing that in­di­vid­u­als should have this right yet pre­tend­ing it will not trans­form the ethics of so­ci­ety as the cul­ture of killing per­me­ates into fam­ily, health and med­i­cal life. Most house­holds, sooner or later, will take de­ci­sions, one way or an­other, cog­nisant of such a law. The dream of eu­thana­sia with­out so­cial dam­age is just that — a dream, se­duc­tive yet false.

The Vic­to­rian pub­lic has not been told the truth by proeuthana­sia politi­cians and this is one of the main themes of this ar­ti­cle. Aus­tralian Med­i­cal As­so­ci­a­tion pres­i­dent Michael Gannon, speak­ing from Chicago, tells In­quirer: “Once you leg­is­late this you cross the Ru­bi­con. Our po­si­tion is we need to do bet­ter with end-of-life care and we say that doc­tors should have no role in in­ten­tion­ally end­ing a pa­tient’s life. The med­i­cal pro­fes­sion is con­cerned be­cause we will be ex­pected to be in­volved.”

He says the AMA is a group of in­di­vid­u­als with vary­ing views, but of the 109 na­tional med­i­cal as­so­ci­a­tions rep­re­sent­ing dif­fer­ent coun­tries, 107 op­pose eu­thana­sia. “We greatly fear there will be co­er­cion,” he says. “It is frankly com­mon­place for pa­tients to tell doc­tors in the pres­ence of their loved ones that they feel they are a bur­den on their fam­i­lies.”

Gannon iden­ti­fies the core dilemma — emo­tion ver­sus rea­son. He says: “The cause for eu­thana­sia has been made in a very emo­tional way and this is the lat­est ex­pres­sion of in­di­vid­ual au­ton­omy as an un­der­ly­ing prin­ci­ple. But the sick, the el­derly, the dis­abled, the chron­i­cally ill and the dy­ing must never be made to feel they are a bur­den. They re­flect a di­ver­sity in our so­ci­ety that is ev­ery bit as im­por­tant as the LGBTI com­mu­nity.”

In a re­cent ar­ti­cle for the Huff­in­g­ton Post, Gannon says: “Eu­thana­sia/physi­cian-as­sisted sui­cide makes us a poorer so­ci­ety not a richer one. While not all our mem­bers agree, the AMA op­poses any in­ter­ven­tions that have as their pri­mary in­ten­tion the end­ing of a per­son’s life.”

Eu­thana­sia con­sti­tutes an im­mense fail­ure of pub­lic pol­icy. Gannon says this step “would in no way en­hance the pro­vi­sion of qual­ity end-of-life care”.

The fur­ther truth is that in Vic­to­ria (and Aus­tralia) politi­cians have de­clined to prop­erly fund and pro­vide ad­e­quate pal­lia­tive care.

In its sub­mis­sion last week on the de­fects of the bill, Pal­lia­tive Care Vic­to­ria said an es­ti­mated 10,000 Vic­to­rian died ev­ery year — one in four deaths — with­out ac­cess to needed pal­lia­tive care. Is it any won­der peo­ple look to eu­thana­sia? On what eth­i­cal ba­sis do politi­cians, hav­ing failed to pro­vide ad­e­quate med­i­cal care for the sick and el­derly, now say real choice must in­volve eu­thana­sia?

Pal­lia­tive Care is­sued a grave warn­ing: “The bill fails to pro­vide

mech­a­nisms that will proac­tively and ad­e­quately mon­i­tor the safety of vul­ner­a­ble per­sons which should be a high pri­or­ity given the sys­temic is­sues and con­cerns.”

What val­ues and prin­ci­ples guide this La­bor govern­ment and its ide­o­log­i­cal ob­ses­sions? Pal­lia­tive Care fears the spirit, not let­ter of the law, will be fol­lowed, with deaths be­ing has­tened as they have in ju­ris­dic­tions such as Bel­gium. It ex­presses con­cerns about the im­pact on “the cul­ture, prac­tice and ex­pe­ri­ence of health­care” in Vic­to­ria. It warns the new law would threaten trust between pa­tients and health prac­ti­tion­ers

Re­fer­ring to our “sui­cide con­ta­gion” with an es­ti­mated 65,300 Aus­tralians at­tempt­ing to com­mit sui­cide in 2015 ((3027 suc­ceeded), Pal­lia­tive Care says: “Le­gal­is­ing vol­un­tary as­sisted dy­ing sends the wrong mes­sage to peo­ple con­tem­plat­ing sui­cide and un­der­mines sui­cide preven­tion ef­forts.” It points to ev­i­dence: le­gal­is­ing vol­un­tary as­sisted sui­cide is tied to an in­creased rate of to­tal sui­cides (hardly a sur­prise) and does not re­sult in any fall in non-as­sisted sui­cides (again, hardly a sur­prise).

Pal­lia­tive Care Vic­to­ria warns this bill will op­er­ate with high risks for the sick and vul­ner­a­ble, the point put by Gannon. Look­ing beyond Vic­to­ria, he says in other na­tions “the leg­is­la­tion has been changed so it can be used against vul­ner­a­ble groups”. In The Nether­lands th­ese de­based laws ex­tend to in­volve chil­dren.

In The Nether­lands last year, sanc­tioned killings and as­sisted sui­cide ac­counted for about 6000 deaths or one in 25 of deaths from all causes. The ini­tial law in 1984 was in­tro­duced with the usual pledges that eu­thana­sia with­out re­quest would not oc­cur, yet a se­ries of of­fi­cial Dutch sur­veys dis­close that physi­cians “have, with vir­tual im­punity, failed to re­port thou­sands of cases and have given lethal in­jec­tions to thou­sands of pa­tients with­out re­quest”.

This anal­y­sis comes from John Keown, the Rose Kennedy pro­fes­sor at the Kennedy In­sti­tute of Ethics at Ge­orge­town Univer­sity, whose 54-page cri­tique of the Vic­to­rian pro­pos­als will be pub­lished in the Jour­nal of Law and Medicine. Keown says the fea­ture of Vic­to­ria’s de­bate is the fail­ure to make the eth­i­cal case for leg­is­la­tion given this is­sue is prob­a­bly the most im­por­tant in con­tem­po­rary bioethics.

Keown says the lan­guage used by Vic­to­rian ad­vo­cates is de­signed to con­ceal — the is­sue is whether the law should per­mit physi­cians to kill pa­tients or as­sist pa­tients to kill them­selves. Eu­phemisms will not suf­fice. But what does it re­veal when ad­vo­cates can­not even use di­rect and hon­est lan­guage to de­scribe what they ad­vo­cate?

The most sub­stan­tive doc­u­ment jus­ti­fy­ing leg­is­la­tion is last year’s Vic­to­rian par­lia­men­tary com­mit­tee re­port on end-of-life choices. In re­ply to the jus­ti­fi­ca­tions it of­fered there are rel­e­vant re­but­tals from Keown and oth­ers.

First, al­low­ing eu­thana­sia and as­sisted sui­cide re­pu­di­ates a piv­otal prin­ci­ple of crim­i­nal law and med­i­cal ethics that all hu­mans, young or old, sick or well, suf­fer­ing or not, pos­sess a hu­man dig­nity that can­not be swept aside. The ef­fect of so do­ing cre­ates un­der law two classes of peo­ple: those whose lives are worth liv­ing and those “bet­ter off dead”.

As Keown says, go­ing to the “in­vi­o­la­bil­ity” of hu­man life, the prin­ci­ple is that re­gard­less of age, health, gen­der, race, re­li­gion or sex­ual ori­en­ta­tion there is an “in­trin­sic and equal worth” in hu­mans such that sanc­tion­ing of killing and as­sisted sui­cide is a thresh­old that should not be crossed.

Sec­ond, it is claimed that eu­thana­sia is about pa­tient choice and per­sonal au­ton­omy. In­deed, this seems the philo­soph­i­cal essence of the bill as ex­plained by Premier Daniel An­drews and Hen­nessy — yet it is man­i­festly false. The pro­posed law, by def­i­ni­tion, is dis­crim­i­na­tory and ar­bi­trary: it gives cer­tain peo­ple on cer­tain con­di­tions ac­cess to eu­thana­sia and de­nies it to oth­ers.

You need to be at least 18 years old; you need to have a dis­ease or ill­ness that will cause death within 12 months; you need to be suf­fer­ing with­out a re­course the pa­tient finds to be tol­er­a­ble; you need to be able to make a re­quest. What about some­body who is 17? What about some­body who suf­fers in­tol­er­a­ble pain but isn’t go­ing to die within the year? Or who is suf­fer­ing but not men­tally able to make a re­quest? What about their au­ton­omy and choices?

At this point the na­ture of the project be­comes ap­par­ent — the politi­cians are de­cid­ing on the ar­bi­trary point that sep­a­rates a life to be pre­served from a life no longer worth liv­ing. But ar­bi­trary di­vid­ing lines will be sub­ject to con­stant pres­sure for change given the un­der­ly­ing prin­ci­ple is in­di­vid­ual au­ton­omy and choice. How could this not hap­pen?

As Keown says, the Dutch and Bel­gians re­alised that once you es­tab­lish the core prin­ci­ple then your moral ar­gu­ment to re­strict the law can­not be sus­tained or lim­ited just to those at “the end of life”. Lead­ing ad­vo­cates of eu­thana­sia in the US and Bri­tain “openly ad­mit­ted that their pro­pos­als are merely a first step”. A push to ex­tend the 2016 Cana­dian law is now un­der way in the courts.

Keown warns Vic­to­rian leg­is­la­tors, once they cross the Ru­bi­con, will face de­mands from “right to die” groups briefing their lawyers to in­voke the Vic­to­rian char­ter of rights to “open the door ever wider”. What will be their ar­gu­ment? That’s easy — it will be about “equal­ity” and “free­dom from dis­crim­i­na­tion” to ac­cess the re­lief pro­vided by eu­thana­sia that oth­ers are en­joy­ing.

“Once the law is re­laxed the prin­ci­pled ar­gu­ments for its ex­ten­sion prove unan­swer­able,” Keown says. He says in 1996 Dutch courts — 12 years af­ter de- cid­ing vol­un­tary eu­thana­sia was law­ful to re­lieve suf­fer­ing — de­cided non-vol­un­tary eu­thana­sia was law­ful for the same rea­son. An in­creas­ing num­ber of pa­tients seek death for de­men­tia, chronic ill­ness and age-re­lated com­plaints.

Newly ap­pointed US Supreme Court jus­tice Neil Gor­such says when the costs as­so­ci­ated with an ac­tiv­ity are re­duced — like re­mov­ing the il­le­gal­ity of eu­thana­sia and as­sisted sui­cide — there will be a grow­ing de­mand. Keown of­fers more ev­i­dence — “the pop­u­lar cam­paign in The Nether­lands” to ex­tend the law to al­low those with “com­pleted lives” to be as­sisted in sui­cide has been ac­com­plished.

At a time when the com­mu­nity is plagued with is­sues around fam­ily vi­o­lence, psy­cho­log­i­cal ill­ness and fam­ily fi­nan­cial pres­sures the em­brace of eu­thana­sia will com­pound in­di­vid­ual tragedy. Think of the im­pact on an ail­ing mother of a son-in-law say­ing: “Mum, have you had enough, your daugh­ter is very dis­tressed?”

This leads di­rectly to the third ob­jec­tion — ef­fec­tive le­gal con­trol of eu­thana­sia and as­sisted sui­cide is im­pos­si­ble as a prac­ti­cal chal­lenge. Vic­to­rian ad­vo­cates know this is a huge prob­lem for their project that must be coun­tered at all costs. Hence it drives their ef­forts to re­strict el­i­gi­bil­ity and sees An­drews de­clare Vic­to­ria’s law will be the “most con­ser­va­tive” in the world — ironic given he thinks be­ing con­ser­va­tive about le­gal­is­ing killing is some­thing to boast about.

The min­is­ter says the Vic­to­rian bill ap­plies only when a pa­tient is di­ag­nosed with “an in­cur­able dis­ease, ill­ness or med­i­cal con­di­tion that is ad­vanced, pro­gres­sive and will cause death” within 12 months. The med­i­cal di­rec­tor at Marie Curie says pre­dict­ing the time of death is “like pre­dict­ing the weather”. Is a con­di­tion “in­cur­able” if a pa­tient re­fuses a cure? Ac­cu­racy deal­ing with death over a 12-month range cre­ates wide scope and is dif­fi­cult to get right.

The pa­tient needs to ob­tain the sup­port of two doc­tors who cer­tify the cri­te­ria have been met. Keown asks: how will the doc­tors know the pa­tient’s re­quest is truly free and in­formed? There are many problems — no firm re­stric­tion on doc­tor shop­ping, no re­quire­ment the doc­tor be fa­mil­iar with the pa­tient, no guar­an­tees pa­tients are told about pal­lia­tive care op­tions, lit­tle re­gard for de­pres­sion or men­tal ill­ness that may drive a re- quest and a test of “suf­fer­ing” that is com­pletely sub­jec­tive.

Once the le­gal drug is pro­vided to the pa­tient the pa­tient is on their own. Keown asks: if a physi­cian is not present when the pa­tient takes the lethal sub­stance, how is the physi­cian to know whether the pa­tient was mak­ing a free de­ci­sion when they swal­lowed it (or whether it was poured down the pa­tient’s throat by a rel­a­tive or vol­un­teer from a eu­thana­sia pres­sure group)?

Keown says: “Ef­fec­tive con­trol is not fea­si­ble. Real, prac­ti­cal problems, not least those of pre­cise def­i­ni­tion and proper en­force­ment are in­tractable, as the ev­i­dence from those few ju­ris­dic­tions which have taken the rad­i­cal step of re­lax­ing their laws has am­ply con­firmed.”

Fourth, an ar­gu­ment for the bill is that some peo­ple are com­mit­ting sui­cide in dread­ful ways, many dy­ing alone or in pain. The im­me­di­ate ques­tion is ob­vi­ous: how many could have been di­verted from sui­cide by psy­chi­atric, psy­choso­cial and pal­lia­tive sup­port? Why aren’t the de­pressed be­ing treated for de­pres­sion? Why aren’t peo­ple be­ing of­fered less lethal op­tions than death?

The op­tion of killing is dis­pro­por­tion­ate yet per­haps se­duc­tive given the dilemma caused by pa­tient pain that needs money, care and sub­stan­tially bet­ter pol­icy. This raises the most se­ri­ous eth­i­cal ques­tions about the mo­tives for eu­thana­sia.

In its sub­mis­sion Pal­lia­tive Care Vic­to­ria says re­cur­rent fund­ing over the three years 2014-17 has “only been suf­fi­cient to main­tain the sta­tus quo” and has “not met the grow­ing de­mand”. With 46,000 Vic­to­ri­ans in res­i­den­tial aged-care fa­cil­i­ties, only 12 per cent re­ceived pal­lia­tive care — while 30 per cent die each year. This is a “high risk” en­vi­ron­ment in re­la­tion to vol­un­tary as­sisted dy­ing. Yet ef­fec­tive pol­icy is “con­sid­er­ably less well de­vel­oped than for fam­ily vi­o­lence and child abuse.” Pal­lia­tive Care says the bill “would pro­vide for and reg­u­late ac­cess to vol­un­tary as­sisted dy­ing” yet there is no par­al­lel pledge to “pro­vide for and reg­u­late ac­cess to pal­lia­tive care”.

The con­stant po­lit­i­cal mantra about choice is ex­tra­or­di­nary hypocrisy — de facto re­fusal to pro­vide pal­lia­tive care is the sin­gle great­est ac­tion in deny­ing gen­uine choice. Pal­lia­tive Care strongly dis­sents from the bill’s 12month “death ex­pec­ta­tion” pro­vi­sion be­cause it “places many more peo­ple at risk of opt­ing to pro­ceed” who may have changed their mind based on new treat-

‘The case of eu­thana­sia has been made in a very emo­tional way by celebri­ties’ MICHAEL GANNON AUS­TRALIAN MED­I­CAL AS­SO­CI­A­TION PRES­I­DENT

ment, re­mis­sion or mis­di­ag­no­sis. It warns about the “lack of ad­e­quate as­sess­ment” of men­tal health on a pa­tient’s de­ci­sion for eu­thana­sia.

Fifth, an­other ar­gu­ment for the bill is that there is il­le­gal prac­tice by doc­tors any­way in help­ing pa­tients die and the ex­ist­ing law is ex­tremely dif­fi­cult to en­force. “The fact that the crim­i­nal law treats cases of as­sisted sui­cide with le­niency and com­pas­sion is not a mat­ter for crit­i­cism but for credit,” Keown says. The ap­pli­ca­tion of such dis­cre­tion does not con­tra­dict up­hold­ing the ex­ist­ing law against eu­thana­sia.

The fi­nal re­flec­tion is that this is­sue is the ul­ti­mate in the ris­ing pol­i­tics of com­pas­sion. Gannon says: “The com­mu­nity seems to be quickly swayed by sto­ries of bad deaths. We have seen tes­ti­mo­ni­als to this. The case of eu­thana­sia has been made in a very emo­tional way by celebri­ties.”

If grandpa de­cides to end his life, what im­pact does this have on the grand­kids? Let’s not pre­tend it has no im­pact be­cause this is how so­cial cul­ture evolves. A ma­ture so­ci­ety needs to dis­tin­guish between com­pas­sion and out­comes. Com­pas­sion is a virtue but com­pas­sion can­not be­come the sole ba­sis for de­cid­ing pub­lic pol­icy.

This is not about the plight of any par­tic­u­lar per­son and how they may pre­fer to die. It is about the to­tal eth­i­cal and com­pas­sion­ate frame­work for so­ci­ety. The warn­ings on the ta­ble could hardly be more se­ri­ous. This is about what sort of civil­i­sa­tion we be­come and what dam­age we per­pe­trate in the name of love.

Premier Daniel An­drews and Health Min­is­ter Jill Hen­nessy

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