The pa­tient nav­i­ga­tor

The Star Malaysia - Star2 - - HEALTH - By KAREN GAR­LOCH

AN hour be­fore surgery, as she lay wait­ing in a hos­pi­tal bed, Sue McKen­zie smiled with re­lief when nurse Mary Keefe walked into her room.

They held hands and talked through last-minute ques­tions.

“You’ll check on me Thurs­day and Fri­day if I’m here?” McKen­zie asked hope­fully. “Oh, yeah,” the nurse said. Mak­ing sure breast can­cer pa­tients get what they need is Keefe’s job.

She’s a pioneer in the grow­ing health­care field known as pa­tient nav­i­ga­tion.

With ad­vances in can­cer treat­ment, pa­tients face far more com­plex de­ci­sions to­day than in the past. As a re­sult, hos­pi­tals across the coun­try are hir­ing nurses or other pro­fes­sion­als to help pa­tients nav­i­gate their way through the med­i­cal sys­tem.

The job of a nav­i­ga­tor is not only to ex­plain breast can­cer, an­swer ques­tions and ar­range doc­tors’ ap­point­ments, but also to coun­sel pa­tients through the ter­ror of a can­cer di­ag­no­sis, show them how they can sur­vive it, and guide them through their jour­ney.

In the Char­lotte area in North Carolina, in the United States, Pres­by­te­rian Health­care, Caroli­nas Health­Care Sys­tem and CaroMont Health em­ploy nav­i­ga­tors to as­sist pa­tients with breast can­cer, as well as other can­cers and dis­eases, such as heart fail­ure. Carolina Neu­ro­surgery & Spine As­so­ci­ates, a doc­tors’ prac­tice, also em­ploys a nav­i­ga­tor for brain tu­mour pa­tients.

There is no ex­tra charge for the ser­vice. It’s part of the health­care pack­age.

One of three breast health nav­i­ga­tors at Pres­by­te­rian, Keefe met McKen­zie the day she was di­ag­nosed. She was there when McKen­zie had CT and bone scans be­fore chemo­ther­apy. And she’ll be there as long as McKen­zie wants to stay in touch.

Since 2006, Keefe has done this for hundreds of pa­tients, some of whom have re­ferred friends, sis­ters or moth­ers.

“We con­nect with them on day one, and we spend as much time as they need,” Keefe said. “I tell them, ‘I don’t work for the doc­tors. I work for you first of all, as your educator, your sup­porter and your co­or­di­na­tor.’ ”

Pa­tient nav­i­ga­tion started in 1990 at Har­lem Hos­pi­tal Cen­ter in New York, where Dr Harold Free­man hoped to re­duce health dis­par­i­ties by im­prov­ing ac­cess to can­cer screen­ing and re­duc­ing bar­ri­ers faced by low-in­come, African-Amer­i­can women.

Many stud­ies sup­port the use of nav­i­ga­tors, said An­gelina Es­parza of the Amer­i­can Can­cer So­ci­ety. “Pa­tients re­ally do feel that they are able to bet­ter cope with the di­ag­no­sis and the can­cer.

“There are sig­nif­i­cant dif­fer­ences in out­comes in terms of stress, fa­tigue and qual­ity of life. For many years, these psy­cho-so­cial needs were of­ten over­looked.”

Ac­cred­it­ing bod­ies for can­cer pro­grammes – not just breast can­cer – are mak­ing pa­tient nav­i­ga­tion a re­quired stan­dard. The Com­mis­sion on Can­cer will re­quire ac­cred­ited can­cer cen­tres to of­fer nav­i­ga­tion ser­vices by 2015.

Nav­i­ga­tors don’t have to be nurses. Some pro­grammes use so­cial work­ers or even lay lead­ers. Nav­i­ga­tor is the buzz­word to­day, but some hos­pi­tals use the term co­or­di­na­tor.

“The name changes but the job is the same,” said Su­san Postell, breast pro­gramme nurse co­or­di­na­tor with Levine Can­cer In­sti­tute at Caroli­nas Med­i­cal Cen­ter. “I think all nurses are nav­i­ga­tors. I’ve been in this role for over 30 years. In a com­plex med­i­cal world, pa­tient nav­i­ga­tor nurses can be a breast can­cer pa­tient’s GPS.

“A lot of what I do is cri­sis in­ter­ven­tion, ex­plain­ing the dis­ease, the name of the can­cer and what it means, of­fer­ing hope more than any­thing else,” she said. “This is an in­tim­i­dat­ing place to come. Ev­ery new can­cer pa­tient needs that per­son they know they can call.”

Keefe, 56, was one of the first of­fi­cial breast health nav­i­ga­tors in Char­lotte. She was work­ing as an on­col­ogy nurse at Pres­by­te­rian when the po­si­tion was ad­ver­tised in 2005.

“I thought, ‘What a great thing to do for peo­ple,’ ” Keefe said.

But doc­tors weren’t con­vinced at first that nav­i­ga­tors were needed.

“I was am­biva­lent about it,” con­fessed Dr Peter Turk, a sur­gi­cal on­col­o­gist. “I didn’t know if she had the abil­ity to make an im­prove­ment in what we were do­ing.”

To­day, he’s a believer.

Work­ing to­gether

When Dr Turk meets pa­tients who have worked with a nav­i­ga­tor, “The dis­cus­sion can be much more fo­cused. By the time they come to see me, a lot of the emo­tion has calmed down. They are able to syn­the­sise and make de­ci­sions.”

Pa­tients who haven’t met with a nav­i­ga­tor are “still very much like a deer in the head­lights,” Dr Turk said. “At the end of the meet­ing, they don’t re­mem­ber a thing. All they hear is the word ‘can­cer.’ ”

Misty Burgie re­mem­bers the day, Oct 30, 2008, when she got her breast can­cer di­ag­no­sis at Pres­by­te­rian Can­cer Cen­ter.

Only 35, she had cho­sen not to meet with the ra­di­ol­o­gist who would give her the re­sults of her biopsy.

“I opted for a phone call,” Burgie said. “I was work­ing full time. I didn’t want to waste an­other trip down­town be­cause I knew I didn’t have breast can­cer.” The news stunned her. “I couldn’t breathe,” she said. “I re­mem­ber think­ing, ‘This must be a mis­un­der­stand­ing. I’m 35 years old. There is no his­tory of breast can­cer in my fam­ily.’ It felt as though I had been given a death sen­tence.”

She got a call from Keefe within min­utes. “When I got off the phone, I thought, ‘OK, I can get through this,’ ” Burgie said. “She just made it sound very do-able.”

When they met the next day, Keefe gave Burgie a 200-page book about breast can­cer and showed her which parts to read and which parts she could ig­nore. “I knew ab­so­lutely noth­ing about breast can­cer,” Burgie said. “She helped put my mind at ease.”

Be­fore each of Burgie’s surg­eries, Keefe showed up to make sure she was OK. And ear­lier this year, when Burgie’s mother was di­ag­nosed with breast can­cer, Keefe was again there to guide them through.

“It just brought in­stant peace know­ing that my mum was go­ing to be in such good hands,” Burgie said.

Typ­i­cally, Keefe spends each morn­ing meet­ing one or more newly di­ag­nosed pa­tients. In­stead of giv­ing bad news over the phone, Pres­by­te­rian usu­ally sched­ules ini­tial ap­point­ments jointly with a ra­di­ol­o­gist and a nav­i­ga­tor.

“Un­less they ab­so­lutely refuse, we make them come in and sit down,” Keefe said. “We’ve sat here for two hours with peo­ple who have lots of ques­tions, and with tis­sues, what­ever they need.”

Keefe gives each pa­tient a tote bag in­clud­ing a jour­nal and a home­made pil­low to el­e­vate the arm af­ter surgery. Mas­tec­tomy pa­tients re­ceive camisoles with pock­ets that hold post-sur­gi­cal drains. Keefe also gives them lists of places that pro­vide breast pros­the­ses and wigs for those who’ll need them.

Some cen­tres make ap­point­ments for pa­tients to meet their sur­geons in two weeks or more. But Keefe and her col­leagues make ap­point­ments within 48 hours. They also ar­range ap­point­ments with mul­ti­ple doc­tors on the same day.

On a re­cent morn­ing, Keefe made rounds in the hos­pi­tal, check­ing on pa­tients. She walked quickly, and her phone rang loudly and of­ten.

In ad­di­tion to vis­it­ing McKen­zie, Keefe stopped to see Joy Wells, a Char­lotte wo­man fin­ish­ing a ra­di­a­tion treat­ment.

They held hands as they sat to talk. Wells, 52, cheer­fully pointed out that her hair is grow­ing back, al­beit grey, af­ter chemo­ther­apy.

“It’s so good to see you,” Wells said. “Thank you so much for help­ing me. I don’t know what I would have done with­out you.” – The Char­lotte Ob­server/Mc­Clatchy Tri­bune In­for­ma­tion Ser­vices

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