Guide­lines to nav­i­gate the twi­light zone

The Weekend Australian - Travel - - Health -

Con­tin­ued from Health cover speak or re­spond. The def­i­ni­tion, re­stated in this week’s doc­u­ments, say PCU should not be di­ag­nosed un­til the pa­tient has been in this state for at least four weeks af­ter emerg­ing from the coma.

Min­i­mally re­spon­sive state — added to the terms of ref­er­ence in time for this ethics re­port — in turn is de­fined as a pa­tient show­ing ‘‘ small and in­con­sis­tent’’ signs of aware­ness, such as say­ing one or two words, or mov­ing a fin­ger or blink when asked to.

The ques­tion was re­ferred to the NHMRC in 2000 by the NSW Gov­ern­ment af­ter a court case in which a judge crit­i­cised a hospi­tal’s de­ci­sion to re­move food, drink and treat­ment from a brain-dam­aged man who had a heart at­tack af­ter a heroin over­dose. The de­ci­sion was made within days of ad­mis­sion and with­out con­sult­ing the man’s fam­ily, who sought an or­der for life sup­port to con­tinue.

The judge crit­i­cised the fact that there was no adopted or recog­nised stan­dard in Aus­tralia for di­ag­nos­ing chronic veg­e­ta­tive state, and said there was an ob­vi­ous need for clear cri­te­ria on di­ag­no­sis and when treat­ment may be with­drawn.

The draft guide­lines do not set rules on this or other points, but in­stead stress there should be ‘‘ a pre­sump­tion . . . in favour of con­tin­u­ing main­te­nance care’’ such as feed­ing. They say while the ques­tion of whether to with­draw care may some­times arise, ‘‘ the im­pact that pro­long­ing the per­son’s life may have on the lives of the fam­ily is not rel­e­vant’’.

‘‘ The ques­tion is never whether the pa­tient’s life is worth­while, but whether a treat­ment is worth­while,’’ the guide­lines say.

Whether or not to re­sus­ci­tate a PCU or MRS pa­tient who has a heart at­tack should be de­ter­mined by the cause of the ar­rest. If the ar­rest was caused by ‘‘ an un­der­ly­ing con­di­tion from which there is lit­tle chance of re­cov­ery . . . at­tempts to re­sus­ci­tate are likely to be fu­tile’’. But if caused by an ob­struc­tion that could be eas­ily cleared, that should be at­tempted, the doc­u­ment sug­gests.

On other points, the draft guide­lines stress the need to fos­ter good de­ci­sion mak­ing by keep­ing the best in­ter­ests of the pa­tient — rather than those of the fam­ily or car­ers — paramount.

When dis­agree­ments oc­cur, th­ese might be over­come by pre­fer­ring some views over oth­ers, the guide­lines say. The pa­tient’s own wishes, if known, should in­form de­ci­sions over what is in the pa­tient’s in­ter­est, and a writ­ten state­ment of th­ese wishes, if it ex­ists, should take prece­dence over a rel­a­tive’s rec­ol­lec­tion or oral ac­count.

If health pro­fes­sion­als are con­cerned that a pa­tient’s rep­re­sen­ta­tive may not be mak­ing de­ci­sions in the pa­tient’s best in­ter­est, they should en­sure a court or tri­bunal re­views those de­ci­sions.

Be­cause it can never be cer­tain how much aware­ness pa­tients have, the doc­u­ment also says health work­ers and fam­ily should al­ways in­clude the pa­tient in con­ver­sa­tions held in their pres­ence, as if they were lis­ten­ing — and should ‘‘ be aware of what should and should not be said in the per­son’s pres­ence, and its pos­si­ble ef­fect’’.

Dur­ing the writ­ing of the doc­u­ment com­mit­tee mem­bers heard ‘‘ har­row­ing’’ sto­ries of pa­tients whose mus­cles had con­stricted due to in­ad­e­quate phys­io­ther­apy, po­ten­tially caus­ing per­ma­nent dam­age.

‘‘ You would hear of some­body’s hands be­ing clenched so tight that the fin­ger­nails start to pen­e­trate the hand,’’ Tonti-Filip­pini says. ‘‘ We are hop­ing to change the plac­ing of pa­tients in cir­cum­stances where they can’t get ad­e­quate care — one of those cir­cum­stances is nurs­ing home care.

‘‘ They don’t usu­ally have the phys­io­ther­apy and other ex­per­tise that is needed to over­come some of the dif­fi­cul­ties that pa­tients with th­ese con­di­tions can have.’’

Other mem­bers of the com­mit­tee that drew up the guide­lines sup­port those con­cerns.

As­so­ci­ate Pro­fes­sor John Olver, di­rec­tor of re­ha­bil­i­ta­tion at Melbourne’s Ep­worth Hospi­tal, said brain in­jury pa­tients were slow to re­cover and needed bet­ter ac­cess to physio ser­vices that were not pred­i­cated on quick re­sults.

‘‘ We have had pa­tients in nurs­ing homes who have come back for some rea­son or other, and be­cause some­one re­alises they show small signs of im­prove­ment they end up back in main­stream re­hab, and have been able to get out of those nurs­ing homes.’’

That cer­tainly gets Mon­ica Blackstock’s sup­port. ‘‘ I would like to see more help avail­able for peo­ple like Bren­dan, rather than be­ing in nurs­ing homes. Be­ing in a fam­ily en­vi­ron­ment, with familiar things around them, is far bet­ter for them.’’

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