‘How long have I got, doc?’

Why many can­cer pa­tients don’t have the answers they want.

The Star Malaysia - Star2 - - Health - By LIZ SZABO

IN the past four years, Bruce Mead-e has un­der­gone two ma­jor surg­eries, mul­ti­ple rounds of ra­di­a­tion and chemo­ther­apy to treat his lung can­cer.

Yet in all that time, doc­tors never told him whether the can­cer was cur­able – or likely to take Mead-e’s life.

“We haven’t asked about cure or how much time I have,” said Mead-e, 63. “We haven’t asked, and he hasn’t of­fered. I guess we have our heads in the sand.”

At a time when ex­pen­sive new can­cer treat­ments are pro­lif­er­at­ing rapidly, pa­tients such as Mead-e have more ther­apy choices than ever be­fore.

Yet pa­tients like him are largely kept in the dark be­cause their doc­tors ei­ther can’t or won’t com­mu­ni­cate clearly. Many pa­tients com­pound the prob­lem by avoid­ing news they don’t want to hear.

Sur­pris­ingly, huge num­bers of can­cer pa­tients lack ba­sic in­for­ma­tion, such as how long they can ex­pect to live, whether their con­di­tion is cur­able or why they’re be­ing pre­scribed chemo­ther­apy or ra­di­a­tion, said Dr Rab Raz­zak, di­rec­tor of out­pa­tient pal­lia­tive medicine at Johns Hop­kins Medicine in Bal­ti­more, United States.

The re­sult: Peo­ple with ad­vanced can­cer don’t know enough about their dis­ease to make in­formed de­ci­sions about treat­ment or how they want to spend their re­main­ing time.

“Avoid­ing these is­sues is re­ally ir­re­spon­si­ble,” said Dr Ira By­ock, ex­ec­u­tive di­rec­tor at the In­sti­tute for Hu­man Car­ing of Prov­i­dence Health & Ser­vices, based in Tor­rance, Cal­i­for­nia.

Even the on­col­o­gists who pre­scribe can­cer treat­ment might not re­alise that so many of their pa­tients are clue­less about what’s go­ing on. “I don’t think they recog­nise the enor­mity of it,” Raz­zak said.

Some pa­tients ap­proach­ing the end of life are in de­nial, as­sum­ing that they’ll live much longer than is re­al­is­tic. Yet doc­tors of­ten have a far more pes­simistic es­ti­mate of their life ex­pectancy, said Dr Robert Gram­ling, the Holly & Bob Miller chair in pal­lia­tive medicine at the Univer­sity of Ver­mont Col­lege of Medicine.

In a study pub­lished last year in the Jour­nal of Clin­i­cal On­col­ogy, only 5% of can­cer pa­tients with less than six months to live had an ac­cu­rate un­der­stand­ing of their ill­ness. Thirty-eight per­cent couldn’t re­mem­ber ever talk­ing to their doc­tor about their life ex­pectancy.

And in a 2012 study in The New Eng­land Jour­nal of Medicine, 69% of pa­tients with metastatic lung can­cer and 81% of peo­ple with ad­vanced col­orec­tal can­cer thought they could still be cured, although both con­di­tions are gen­er­ally con­sid­ered fa­tal, said study co-au­thor Dr Nancy Keat­ing, a pro­fes­sor of health care pol­icy and medicine at Har­vard Med­i­cal School.

Such mis­un­der­stand­ings can have pro­found con­se­quences for pa­tients and their care­givers. Pa­tients who don’t un­der­stand how long they have to live of­ten choose overly ag­gres­sive ther­apy that can cause point­less pain and suf­fer­ing.

“It’s sur­pris­ing how many peo­ple end up in an ICU, crit­i­cally ill and dy­ing, without re­al­is­ing they’re dy­ing,” said Dr Mark Siegel, a pro­fes­sor of in­ter­nal medicine and crit­i­cal care spe­cial­ist at the Yale School of Medicine.

These last-ditch mea­sures to ex­tend life can leave fam­i­lies with ex­tended grief and trauma, Siegel said. “The real ques­tion is, ‘How do these pa­tients be­come overly op­ti­mistic about their prog­no­sis and what part do physi­cians play in this?’” Siegel said.

“What do physi­cians tell the pa­tients? What are pa­tients hear­ing?”

In some cases, on­col­o­gists fail to tell pa­tients how long they have to live.

In oth­ers, pa­tients are clearly told their prog­no­sis, but are too over­whelmed to ab­sorb the in­for­ma­tion.

Some doc­tors and pa­tients en­ter into an im­plicit agree­ment to avoid talk­ing about dy­ing, a pact that re­searchers have de­scribed as “nec­es­sary col­lu­sion”.

New treat­ments have made dis­cus­sions about prog­no­sis even more com­pli­cated, said Dr Jennifer Temel, di­rec­tor of can­cer out­comes re­search at the Mas­sachusetts Gen­eral Hos­pi­tal Can­cer Cen­ter. Although ad­vanced can­cers are still usu­ally fa­tal, a frac­tion of pa­tients are liv­ing much longer due to these drugs.

Doc­tors can’t al­ways be sure, though, which pa­tients are likely to ben­e­fit, Temel said.

The op­ti­mism bias

When in doubt, both doc­tors and pa­tients tend to err on the side of op­ti­mism, as­sum­ing that a treat­ment will work.

De­liv­er­ing bad news, par­tic­u­larly to long­time pa­tients, can be painful, said Dr Ron­ald Adel­man, co-chief of geri­atrics and pal­lia­tive medicine at New York-Pres­by­te­rian Hos­pi­tal/Weill Cor­nell Med­i­cal Cen­ter.

“They have a long, con­nected re­la­tion­ship and it’s very hard to not be able to de­liver what the pa­tients are hop­ing for,” Adel­man said.

Even doc­tors who want to be hon­est are of­ten un­able to forecast how long pa­tients will live.

In a study of 468 ter­mi­nally ill can­cer pa­tients, only 20% of hospice doc­tors ac­cu­rately pre­dicted how long pa­tients would sur­vive. Most weren’t even close, es­ti­mat­ing that pa­tients would live five times longer than they did.

Sig­nif­i­cantly, the longer that doc­tors knew their pa­tients, the more likely they were to get it wrong, sug­gest­ing that emo­tional bonds clouded doc­tors’ think­ing.

Even pa­tients with early, cur­able can­cers of­ten lack key in­for­ma­tion.

Ni­cole Wesolowski was di­ag­nosed with early rec­tal can­cer last year at age 27, and has en­dured surgery and chemo­ther­apy in the hopes of cur­ing it. But she said her doc­tor has never told her what the chances are that her can­cer will come back.

“Doc­tors don’t want to tell you some­thing they don’t know,” said Wesolowski, of New York City, who said there are no stud­ies to help pre­dict her chances of cure, both be­cause she’s so much younger than the typ­i­cal can­cer pa­tient and be­cause she re­ceived an ex­per­i­men­tal treat­ment. “I don’t think (my doc­tor) has an an­swer. It might be bet­ter if I don’t know.”

Say­ing a lot, but com­mu­ni­cat­ing lit­tle

On­col­o­gists have long been crit­i­cised for fail­ing to give pa­tients the news they need to plan their fu­tures.

In a 2001 study, 40% said they would give in­ac­cu­rate sur­vival es­ti­mates – mostly paint­ing an overly sunny pic­ture.

Record­ings of clinic vis­its show that on­col­o­gists de­vote less than 10% of their time to talk­ing about pa­tients’ prog­no­sis, ac­cord­ing to a March study in the Jour­nal of On­col­ogy Prac­tice, in which re­searchers lis­tened to 128 au­dio record­ings of on­col­o­gists and pa­tients.

One doc­tor in the study ob­scured the news that a pa­tient’s can­cer had got­ten worse by quickly tran­si­tion­ing to treat­ment choices. “The good news is there’s lots of other op­tions here,” he said.

Doc­tors in the study also overused med­i­cal terms that pa­tients might not un­der­stand, said co-au­thor Dr Toby Camp­bell, chief of pal­lia­tive care at the Univer­sity of Wis­con­sin School of Medicine and Public Health.

Such med­i­cal jar­gon gave Carolyn McClana­han’s mother false hope af­ter she was di­ag­nosed with ter­mi­nal liver can­cer at age 66.

A doc­tor told her mother that there was a 25% chance that her tu­mour would “re­spond” to chemo, mean­ing that it would shrink. McClana­han’s mother, des­per­ate for good news, as­sumed this meant she had a 25% chance of cure – even though her can­cer was in­cur­able.

While shrink­ing a tu­mour can pro­vide some re­lief from symp­toms, it doesn’t nec­es­sar­ily pro­long life.

The chemo caused McClana­han’s mother to de­velop painful ul­cers in her mouth and oe­soph­a­gus, which pre­vented her from eat­ing or drink­ing, said McClana­han, a for­mer fam­ily physi­cian and emer­gency medicine doc­tor from Jack­sonville, Fla.

Her mother be­came de­hy­drated and was hos­pi­talised for two weeks, tak­ing in nu­tri­tion only through a tube, McClana­han said.

Her mother en­tered hospice care, which fo­cuses on pro­vid­ing com­fort at the end of life, and died two weeks later.

“Thank­fully, we had a cou­ple good weeks be­fore she died,” said McClana­han, who now works as a fi­nan­cial plan­ner. “I’m still so an­gry at my­self for what she went through.”

Shop­ping for good news

In sur­veys, peo­ple with can­cer over­whelm­ingly say they want doc­tors to be hon­est with them.

In the real world, doc­tors can pay a price for hon­esty.

Can­cer pa­tients tend to pre­fer doc­tors who de­liver op­ti­mistic mes­sages, rat­ing them as more com­pas­sion­ate and trust­wor­thy, ac­cord­ing to a 2015 study in JAMA On­col­ogy.

In fact, pa­tients with the least ac­cu­rate idea of their prog­no­sis – who mis­tak­enly be­lieve that chemo can cure an in­cur­able can­cer – give their doc­tors the high­est scores for com­mu­ni­ca­tion.

“Pa­tients want doc­tors to be hon­est with them, and they want doc­tors to hon­estly tell them that their dis­ease can be cured,” Gram­ling said.

When faced with trau­matic news, some pa­tients are un­able to process the in­for­ma­tion, even when doc­tors are blunt, stud­ies sug­gest.

One-third of pa­tients with ad­vanced can­cer in a small 2011 study mis­tak­enly be­lieved their dis­ease was cur­able, even af­ter read­ing ed­u­ca­tional ma­te­rial that stated, “In this set­ting, there is no chance of cure.”

“What doc­tors say and what pa­tients hear are very dif­fer­ent,” said Dr Leonard Saltz, chief of the gas­troin­testi­nal on­col­ogy ser­vice at New York’s Me­mo­rial Sloan Ket­ter­ing Can­cer Cen­ter. “There are cop­ing mech­a­nisms that help peo­ple get through the day by sim­ply not hear­ing that they’re go­ing to die.”

If doc­tors’ words fail to get through to pa­tients, it may be be­cause pa­tients value other opin­ions more highly.

In a 2016 study in Can­cer ,more than 70% of pa­tients based how long they ex­pected to live on per­sonal be­liefs. Six per­cent based their es­ti­mates on re­li­gious be­liefs, while 18% based their es­ti­mates on in­for­ma­tion from their doc­tor.

“When the physi­cian says, ‘We’ll give you this chemo and it may pro­long your life,’ the pa­tient thinks, ‘I’m sure the cure is just a few more months down the road, and this will keep me alive un­til the cure comes along,’” said Betty Fer­rell, di­rec­tor of nurs­ing re­search and ed­u­ca­tion at City of Hope Na­tional Med­i­cal Cen­ter in Duarte, Cal­i­for­nia.

On­col­o­gists say they strug­gle to pro­vide ac­cu­rate in­for­ma­tion, without scar­ing pa­tients away.

If doc­tors ap­pear too neg­a­tive, “pa­tients will go out the door and see an­other doc­tor who will tell them what they want to hear,” Saltz said.

Paulette Thomp­son-Clin­ton said she “fired” an on­col­o­gist for be­ing too neg­a­tive. Thomp­son-Clin­ton, a min­is­ter with breast can­cer that has spread to her bones, said she chooses to live with “faith and op­ti­mism”.

“My on­col­o­gist said, ‘The av­er­age life span is three years, so you’ll prob­a­bly live about that amount of time,’” said Thomp­son-Clin­ton, 49, who has since sur­vived seven years. “There just seemed to be no hope. I was look­ing for some­one to part­ner with. It takes a lot of en­ergy and ef­fort.”

To­day, Thomp­son-Clin­ton said she again finds her­self at a cross­roads. Her pre­vi­ous can­cer treat­ments have stopped work­ing, and her doc­tor has rec­om­mended in­tra­venous chemo­ther­apy – some­thing she doesn’t want to do. She’s con­sid­er­ing al­ter­na­tive medicine, in­clud­ing a clinic in Ti­juana, Mex­ico.

“I’m in a harder place than I’ve ever been,” Thomp­son-Clin­ton said. “I feel like I’m at the end of my op­tions.” – Kaiser Health News/ Tri­bune News Ser­vice


Mead-e, who has ad­vanced lung can­cer, has un­der­gone two ma­jor surg­eries, mul­ti­ple rounds of ra­di­a­tion, and chemo­ther­apy over four years.

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