Even doc­tors can be un­sure of how to talk to dy­ing pa­tients, but new guide­lines aim to make that eas­ier, re­ports Lyn­nette Hoff­man

The Weekend Australian - Travel - - Health -

AS a pal­lia­tive care physi­cian, doc­tor Louise Welch has dealt with more than her fair share of an­gry fam­i­lies. Like the par­ents of the 21-yearold man who en­tered hospi­tal on Christ­mas Eve with ab­dom­i­nal pain and vom­it­ing, symp­toms they’d sus­pected might be ap­pen­dici­tis.

When the man awoke from surgery his par­ents had al­ready gone home and the ef­fects of the med­i­ca­tion were still lin­ger­ing. He asked the doc­tor what they had found.

It’s the sort of sit­u­a­tion any doc­tor would dread. The young man had can­cer, and it had al­ready spread through­out his body, leav­ing him just weeks to live.

What­ever way it was de­liv­ered, such news would be dev­as­tat­ing, and the nurse who was there, lis­ten­ing, says the doc­tor’s ex­pla­na­tion was car­ing and sen­si­tively spo­ken. It’s the tim­ing that was wrong. And the fam­ily never quite got over it, says Welch, who is di­rec­tor of pal­lia­tive ser­vices for the Sun­shine Coast Health Ser­vice. They were fu­ri­ous that they hadn’t been there, and were dis­trust­ful of other doc­tors and nurses from that point on, re­fus­ing any med­i­ca­tion or treat­ment that was sug­gested, even though it would likely have made the man’s dy­ing days more com­fort­able, she says.

Margherita Ni­co­letti, di­rec­tor of med­i­cal ser­vices at St John of God Mur­doch Com­mu­nity Hospice in Perth, also knows of many other such sto­ries. There was the 60-year-old man with mo­tor neu­rone dis­ease who was told dis­mis­sively by his neu­rol­o­gist that he was go­ing to die and noth­ing more could be done.

This man, too, was on his own when he heard the news. There was no op­por­tu­nity to ask ques­tions. No men­tion was made of what could be done to re­duce pain and symp­toms in the mean­time. He learned he was go­ing to die, and then he was sent home to tell his wife.

Of­ten what doc­tors do is not talk about it. They avoid it, so the pa­tient is robbed of the op­por­tu­nity to take con­trol of their life,’’ Ni­co­letti says.

Pa­tients who don’t have a clear un­der­stand­ing of their prog­no­sis are more likely to be­come anx­ious and con­cerned, and they and their fam­i­lies may be more stressed and make less in­formed de­ci­sions, ac­cord­ing to a sys­tem­atic re­view of 123 stud­ies pub­lished on the Na­tional Health and Med­i­cal Re­search Coun­cil clin­i­cal tri­als web­site last year (­search/publi­ca­tions/ ar­ti­cles—2006.htm).

Last month the first com­pre­hen­sive set of guide­lines for how doc­tors should com­mu­ni­cate bad news to dy­ing pa­tients was pub­lished in the Med­i­cal Jour­nal of Aus­tralia (2007;186(12):S77-S108).

In an­other sign that the Gov­ern­ment is tak­ing on some of the con­cerns of dy­ing pa­tients and their fam­i­lies, the NHMRC also this week an­nounced $3.5 mil­lion in fund­ing for 22 grants for pal­lia­tive care re­search. Along with look­ing at ways to im­prove qual­ity of care and clin­i­cal prac­tice, the fund­ing will also go to­wards re­search into sup­port for fam­ily and car­ers.

The guide­lines, which were also funded and re­leased by the NHMRC, make clear that talk­ing to pa­tients about their prog­no­sis is a very per­sonal thing, so doc­tors need to tai­lor their com­mu­ni­ca­tion on a case-by-case ba­sis.

Poor qual­ity or lack of dis­cus­sion about end-of-life is­sues is one of the most fre­quent causes of dis­sat­is­fac­tion and com­plaints about care at the end of life, says lead au­thor of the guide­lines doc­tor Josephine Clay­ton, head of pal­lia­tive care at Syd­ney’s Royal North Shore Hospi­tal and a se­nior lec­turer at the Univer­sity of Syd­ney.

‘‘ The way doc­tors and nurses talk with pa­tients and fam­i­lies about th­ese is­sues is not al­ways done ideally — the pa­tient may be re­luc­tant to bring it up be­cause it’s scary, and the health pro­fes­sional may be re­luc­tant be­cause they are wor­ried about up­set­ting the pa­tient or mak­ing them lose hope,’’ she says.

Un­til re­cently there has been a lack of guid­ance in the lit­er­a­ture on how best to dis­cuss such is­sues with pa­tients and their fam­i­lies, and con­se­quently few doc­tors re­ceived spe­cific train­ing in how to do it, Clay­ton says.

The re­sult is that many doc­tors lack con­fi­dence and are un­com­fort­able with dis­cussing end-of-life is­sues.

But while most pa­tients want to know as much de­tail as they can get about their di­ag­no­sis and prog­no­sis, not ev­ery­one does. Older pa­tients and those from non-English-

Pic­ture: Marie Nirme­cap­tion

Help at end: Margherita Ni­co­letti, pal­lia­tive care doc­tor and med­i­cal di­rec­tor, talks to Ma­ree Fin­lay, who is suf­fer­ing from Mo­tor Neu­rone Dis­ese

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