Break­ing it gen­tly to the dy­ing

The Weekend Australian - Travel - - Health - From pre­vi­ous page

speak­ing or non-North­ern Euro­pean cul­tures are less likely to want de­tailed in­for­ma­tion, for ex­am­ple. But ev­ery pa­tient is dif­fer­ent, so it’s im­por­tant that doc­tors steer away from as­sump­tions and clar­ify what the pa­tient un­der­stands and wants to know, she says.

Yet that of­ten does not hap­pen. One study cited in the re­view found that fewer than a third of GPs tried to gauge what the pa­tient al­ready knew or wanted to know about their dis­ease. Re­search in the re­view shows doc­tors are not good at pre­dict­ing how much pa­tients want to know, and tend to un­der­es­ti­mate their needs. Like­wise, the re­search shows a dis­crep­ancy be­tween the level of in­for­ma­tion pa­tients say they’ve re­ceived, and what doc­tors say they’ve pro­vided.

Donna Daniell, CEO of Pal­lia­tive Care Aus­tralia, a na­tional peak body for care of the dy­ing, says many pa­tients and their fam­i­lies aren’t be­ing told the in­for­ma­tion they need. ‘‘ They’re be­ing de­nied the op­por­tu­nity to re­ally make choices about how to end their lives,’’ she says.

In some cases that can make a big dif­fer­ence to the type of care a pa­tient re­ceives. When can­cer pa­tients are not ad­e­quately in­formed of their prog­no­sis, they are more likely to choose ag­gres­sive treat­ments and make de­ci­sions they later re­gret.

For ex­am­ple, when ev­i­dence shows there’s very lit­tle chance they will sur­vive, they may still be un­der­go­ing ra­dio­ther­apy or chemo­ther­apy which may only ex­tend their life min­i­mally — and re­duce their qual­ity of life in the process.

Other de­ci­sions, such as whether or not to re­sus­ci­tate, are also made eas­ier when fam­i­lies are bet­ter in­formed. The pa­tient can ‘‘ own’’ the ex­pe­ri­ence and de­cide how they want to spend their life. Ni­co­letti says one pa­tient with mo­tor neu­rone dis­ease put treat­ments on hold and spent his dy­ing days at an up­mar­ket re­sort with his wife, a de­ci­sion he may not have made had he not had such a clear un­der­stand­ing of the lim­its of the treat­ment he was re­ceiv­ing.

On the flip side, just be­cause a di­ag­no­sis of ter­mi­nal ill­ness is made, it doesn’t mean there is noth­ing the med­i­cal team can do to help, Welch says. ‘‘ Even if you can’t be cured, there are of­ten ways to con­trol or im­prove symp­toms such as pain or nausea — and we can still of­fer sup­port. There’s al­ways some­thing we can do.’’

Get­ting that mes­sage through to pa­tients in the midst of emo­tional tur­moil is tricky.

Pa­tients only re­mem­ber about 15 per cent of a 15-minute con­sul­ta­tion at the best of times, so dur­ing an emo­tional di­ag­no­sis you can ex­pect them to re­mem­ber even less. But ef­fec­tive com­mu­ni­ca­tion isn’t just some­thing you’re ei­ther a nat­u­ral at or not, Clay­ton says. While some peo­ple may be bet­ter than oth­ers, it is some­thing that can be learned. ‘‘ Com­mu­ni­ca­tion is cer­tainly a skill; it isn’t just based on in­tu­ition and it doesn’t re­li­ably im­prove with ex­pe­ri­ence,’’ she says.

Proper com­mu­ni­ca­tion is founded on good prepa­ra­tion. Tak­ing time to pre­pare for the dis­cus­sion is im­por­tant, as is re­view­ing the di­ag­no­sis and test re­sults, book­ing a longer con­sul­ta­tion, and mak­ing sure a loved one comes along to add sup­port.

Clay­ton says doc­tors need to be hon­est with­out be­ing blunt, and keep in­for­ma­tion sim­ple and clear. They should pay at­ten­tion to body lan­guage and give the pa­tient time to ask ques­tions and ab­sorb the in­for­ma­tion.

Rather than launch­ing straight into a dis­ser­ta­tion about the dis­ease, it’s im­por­tant to take the time to as­sess the pa­tient’s state and build a rap­port. Sen­si­tiv­ity and em­pa­thy go a long way, she says.

Doc­tors aren’t the only ones who strug­gle to find the right words — it’s some­thing friends and fam­ily ex­pe­ri­ence as well. Should they avoid talk­ing about the sit­u­a­tion? Should they talk about things they en­joy? Should they en­cour­age the per­son to be pos­i­tive?

Ex­perts say the best thing to do is lis­ten, be em­phatic, show that you care. One way to do that is to of­fer prac­ti­cal help where you can — of­fer to help with the kids, mow the lawn, bring a meal. It can also be help­ful to talk about mem­o­ries and shared ex­pe­ri­ences. What should friends or fam­ily not do? ‘‘ Never give un­so­licited ad­vice about how some­one should be cop­ing, so don’t say things like ‘ look on the bright side’ or try to cheer up’,’’ Clay­ton says.

You don’t have to fo­cus all your at­ten­tion on the ill­ness, but don’t pre­tend it doesn’t ex­ist ei­ther, Ni­co­letti says.

‘‘ Peo­ple some­times want to talk about it, but their world of peo­ple gets smaller and smaller be­cause peo­ple don’t know what to say and they feel un­com­fort­able.’’

Usu­ally if a sick per­son wants to dis­cuss their ill­ness they will say lit­tle things here and there to clue you in, she says. You don’t need to say all that much.’’ The guide­lines can be viewed at www.mja.com.au/pub­lic/is­sues/ 186—12—180607/cla11246—fm.html#0— i1093824

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