New guide­lines aim to clear a path through the eth­i­cal mine­field of car­ing for peo­ple un­re­spon­sive af­ter a coma. Health ed­i­tor Adam Cress­well re­ports

The Weekend Australian - Travel - - Health -

MON­ICA Blackstock still finds her­self slip­ping into the present tense to de­scribe how her son Bren­dan per­forms jumps on his BMX bike at skate parks, and on the steep hill where the fam­ily lives in the Melbourne sub­urb of Pas­coe Vale. Ex­cept Bren­dan doesn’t jump any more, nor is he likely to.

Now 26, Bren­dan — the 1.87m gi­ant she called her ‘‘ mini-ox’’ — has been in a min­i­mally re­spon­sive state for 14 months, since the night in April last year when hit by a car while re­turn­ing home on his mo­tor­bike. He had the right of way, but that is of lit­tle rel­e­vance now. He suf­fered skull frac­tures, brain haem­or­rhages, bro­ken ribs and bones, lost a kid­ney and dam­aged his liver.

He sleeps and wakes like any­one else, but he can’t walk or talk, and it’s not clear if his brain still has any words to form. He breathes through a tube in his throat, to stop him chok­ing on his own mu­cus, and is fed through a tube into his stom­ach so he doesn’t in­hale his food. Phys­io­ther­a­pists visit him three times a week to stop his mus­cles con­tract­ing and his limbs seiz­ing up.

‘‘ It’s a night­mare, one that no par­ent should have to live through,’’ says his mother, who has spent up to 10 hours a day help­ing to care for him since the ac­ci­dent. ‘‘ It’s just dev­as­tat­ing — it pulls ev­ery­body apart. When you talk about chil­dren (in front of him) he starts to cry, be­cause he has a lit­tle daugh­ter.

‘‘ Some­times you think he is aware that you’re there, but does he know it’s me? Or is it just an im­age he sees? We just don’t know.’’

What aware­ness Bren­dan has of his own con­di­tion or any­thing else is un­known, be­cause there is no way of mea­sur­ing aware­ness or con­scious­ness in peo­ple who can­not com­mu­ni­cate.

And un­til re­cently, there has not even been an agreed way to as­sess or treat pa­tients in a min­i­mally re­spon­sive state (MRS), or the as­so­ci­ated con­di­tion post-coma un­re­spon­sive­ness (PCU) — where there is even less sign of con­scious ac­tiv­ity.

PCU is the pre­ferred new term for what used to be called per­sis­tent veg­e­ta­tive state, which is now deemed un­suit­able be­cause it la­bels the pa­tient as a veg­etable, in­ca­pable of con­scious thought — some­thing no­body can ac­cu­rately de­ter­mine. The for­mer term also sug­gests the con­di­tion is per­ma­nent. In fact, slow but sig­nif­i­cant im­prove­ments — while rare once a pa­tient has been in PCU for some months — can and oc­ca­sion­ally do oc­cur.

Draft guide­lines for the care of pa­tients with PCU and MRS— the first in Aus­tralia — were pub­lished this week by the Na­tional Health and Med­i­cal Re­search Coun­cil.

They are in­tended to help both doc­tors and pa­tients ne­go­ti­ate the dif­fi­cult is­sues th­ese cases throw up: what are the re­spon­si­bil­i­ties of health pro­fes­sion­als in th­ese cases? Who gets to de­cide what care is given, or not given? Who should be given in­for­ma­tion about the pa­tient? And if there are con­flict­ing views about what treat­ment is best, or what the pa­tient them- selves would have wanted, whose opin­ion should count?

Ni­cholas Tonti-Filip­pini, the ethi­cist who chaired the work­ing com­mit­tee that drafted the new guide­lines, says al­though vol­un­tary, they should help pre­vent any in­stance here of the le­gal bun­fight that oc­curred in 2005 over the fate of US wo­man Terri Schi­avo, in a per­sis­tent veg­e­ta­tive state since 1990.

Her case was dragged through the US courts, and even Congress, amid a bit­ter dis­pute be­tween her hus­band and her Catholic par­ents over whether her feed­ing tube should be re­moved. Her par­ents had claimed there was still a slight hope she might im­prove, but she was al­lowed to die in March 2005 af­ter the Supreme Court re­fused to in­ter­vene. An au­topsy later showed her brain had shrunk markedly, and no re­cov­ery could have oc­curred.

Tonti-Filip­pini says the new guide­lines will im­prove com­mu­ni­ca­tion and de­ci­sion-mak­ing be­tween health pro­fes­sion­als and fam­ily mem­bers, head­ing off dis­putes and also al­low­ing for ear­lier res­o­lu­tion of dis­putes. ‘‘ We would hope that if peo­ple used our guide­lines, they wouldn’t find them­selves in court,’’ he says.

In­for­ma­tion on PCU in Aus­tralia is so poor there are not even ac­cu­rate fig­ures for the num­bers of pa­tients af­fected.

This week’s re­port says of­fi­cial fig­ures put the num­ber at less than 100, but this con­trasts with an es­ti­mated 10,000 to 25,000 in the US — which ought to equate to be­tween 1000 and 2500 in Aus­tralia, a short­fall Tonti-Filip­pini says is ‘‘ quite ex­tra­or­di­nary’’.

‘‘ We don’t know what that (short­fall) means — whether PCU pa­tients are not be­ing picked up in the fig­ures, whether the clas­si­fi­ca­tions are be­ing done dif­fer­ently, or whether they per­haps do not sur­vive acute care,’’ he says.

A pre­vi­ous NHMRC doc­u­ment, en­dorsed in 2003 as a first stage of ad­dress­ing the lack of Aus­tralian guide­lines, cre­ated the first guide for di­ag­nos­ing PCU, defin­ing it as a post-coma state akin to a ‘‘ twi­light zone’’, in which pa­tients ap­pear to sleep and wake nor­mally, but ap­pear oth­er­wise un­aware and do not Con­tin­ued inside, page 19

Pic­ture: Shan­non Mor­ris

Home care: Mon­ica Blackstock with son Bren­dan, post-coma un­re­spon­sive af­ter a mo­tor­bike ac­ci­dent.

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