"Long before it's in the papers"
August 03, 2010

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Fateful signature may haunt unsuspecting patients

April 28, 2008
Courtesy UC-Irvine
and World Science staff

A new study sug­gests some pa­tients, fall­ing in­to the throes of se­vere ill­ness, may for­get a crit­i­cal fact: they once signed pa­pers or­der­ing doc­tors to cut their life sup­port.

And they don’t want that an­y­more.

Sci­en­tists say few safe­guards ex­ist to help those whose sto­ic in­ten­tions melt away as death ap­proaches the door, as well as oth­ers who for var­i­ous rea­sons re­con­sid­er—but for­get—their pre­vi­ous or­ders.

The is­sue, re­search­ers add, ex­poses the lim­ita­t­ions of the doc­u­ments known as liv­ing wills, de­signed to ex­press pa­tients’ wishes about crit­i­cal care for when they’re too ill to state those de­sires.

“Liv­ing wills are a no­ble idea and can of­ten be very help­ful,” said Uni­ver­s­ity of California-Irvine psy­cholo­g­ist Pe­ter Dit­to, who helped car­ry out the stu­dy. “But the no­tion that you can just fill out a doc­u­ment and all your trou­bles will be solved, a no­tion that is fre­quently re­in­forced in the pop­u­lar me­dia, is se­ri­ously mis­guid­ed.”

Dit­to and col­leagues found that as many as one in four old­er peo­ple may both change and for­get their pre­vi­ous end-of-life care wishes. 

The re­search­ers in­ter­viewed 401 adults old­er than 65 about which life-sustaining treat­ments, such as re­sus­cita­t­ion and tube feed­ing, they would want if se­ri­ously ill. Re-in­ter­viewed a year lat­er, about a third of par­ti­ci­pants changed their minds, the in­ves­ti­ga­tors found. And of those, three-fourths mis­tak­enly thought their orig­i­nal views matched the new ones. 

In­ter­view­ers al­so talked to peo­ple em­pow­ered to make med­i­cal de­ci­sions if the study sub­jects were no long­er able. These po­ten­tial sur­ro­gate de­ci­sion­mak­ers were even less sen­si­tive to changes in their loved one’s wishes, show­ing false mem­o­ries in 86 per­cent of cases, the re­search­ers said.

The find­ings ap­pear in the cur­rent is­sue of the re­search jour­nal Health Psy­chol­o­gy, pub­lished by the Amer­i­can Psy­cho­log­i­cal As­socia­t­ion.

Liv­ing wills, al­so called ad­vance di­rec­tives, typ­ic­ally re­mind peo­ple of their right to up­date their di­rec­tives if their wishes change. The prob­lem, said Dit­to, is that the de­sires some­times change with­out peo­ple rec­og­niz­ing it. 

“These re­sults sug­gest that liv­ing wills should have an ‘ex­pira­t­ion date.’ Peo­ple can’t be counted up­on to up­date their di­rec­tives as their wishes change,” Dit­to said. “On a more per­son­al lev­el, our re­search stresses the im­por­tance of main­tain­ing an on­go­ing di­a­logue among in­di­vid­u­als, their fam­i­lies and their physi­cians about end-of-life treat­ment op­tions.”

* * *

A new study suggests some patients, falling into the throes of severe illness, may forget a critical fact: they once signed papers ordering doctors to cut their life support. And they don’t want that anymore. Scientists say few safeguards exist to help those whose stoic intentions melt away as death approaches the door, as well as others who for various reasons reconsider—but forget—their previous orders. The issue, researchers added, exposes the limitations of the documents known as living wills, designed to express patients’ wishes about critical care for when they’re too ill to state those wishes any longer. “Living wills a noble idea and can often be very helpful,” said said University of California-Irvine psychologist Peter Ditto, who helped carry out the study. “But the notion that you can just fill out a document and all your troubles will be solved, a notion that is frequently reinforced in the popular media, is seriously misguided.” Ditto and colleagues found that as many as one-fourth of older people may both change and forget their previous end-of-life care wishes. The researchers interviewed 401 adults older than 65 about which life-sustaining treatments, such as resuscitation and tube feeding, they would want if seriously ill. Re-interviewed a year later, about a third of participants changed their minds, the investigators found. And of those, three-fourths mistakenly thought their original views matched the new ones. Interviewers also talked to people empowered to make medical decisions if the study subjects were no longer able. These potential surrogate decisionmakers were even less sensitive to changes in their loved one’s wishes, showing false memories in 86 percent of cases, the researchers said. The findings appear in the current issue of the research journal Health Psychology, published by the American Psychological Association. Living wills, also called advance directives, typically remind people of their right to update their directives if their wishes change. The problem, said Ditto, is that the wishes sometimes change without people recognizing it. “These results suggest that living wills should have an ‘expiration date.’ People can’t be counted upon to update their directives as their wishes change,” Ditto said. “On a more personal level, our research stresses the importance of maintaining an ongoing dialogue among individuals, their families and their physicians about end-of-life treatment options.”