Heart fail­ure patients get lit­tle guid­ance

Study shows many live longer but are not pre­pared for end

Houston Chronicle Sunday - - HEALTH SCIENCE - By Gina Kolata

Ricky Hurst’s doctors told him last year that there was noth­ing more they could do. His heart was fail­ing, and he should get his af­fairs in or­der. The end was com­ing.

His fam­ily gath­ered. He spoke to his pas­tor and re­signed him­self to death. “If it was meant to be, it was meant to be,” he said.

But Hurst, 56, a for­mer ranger and school football coach in Jack­son, Mich., is still alive, although his heart con­tin­ues to weaken. And patients like him are rais­ing a new dilemma for doctors.

Heart dis­ease once killed ruth­lessly and quickly; patients like Hurst suc­cumbed to heart at­tacks and sud­den death from car­diac ar­rest. But with im­proved medical care and im­planted de­vices that bol­ster the heart, a grow­ing num­ber of heart patients sur­vive for years, even decades, cop­ing with a chronic, pro­gres­sive con­di­tion punc­tu­ated by crises and hos­pi­tal­iza­tions.

Their dis­ease at that point is called heart fail­ure — their weak­ened heart can­not pump enough blood to sup­ply the body’s needs. The num­ber of Amer­i­cans with heart fail­ure in­creased to 6.5 mil­lion in 2011-2014 from 5.7 mil­lion in 2009-2012, ac­cord­ing to the Amer­i­can Heart As­so­ci­a­tion.

More than 10 per­cent of those older than 80 have heart fail­ure, and more patients are liv­ing longer with ad­vanced dis­ease. Even as the death rate from heart at­tacks is fall­ing, the fig­ure for heart fail­ure is ris­ing.

Yet there are no widely ac­cepted guide­lines for deal­ing with these patients as they near death. Can­cer spe­cial­ists reg­u­larly move their patients to hospice at the end of life, for in­stance, but few car­di­ol­o­gists even think of it. Heart patients ac­count for just 15 per­cent of hospice deaths, while can­cer patients make up half, ac­cord­ing to a re­cent study. Shocked just be­fore dy­ing

That pa­per, pub­lished in the Jour­nal of the Amer­i­can Col­lege of Car­di­ol­ogy, re­viewed a num­ber of ways in which heart patients are let down at the end of life. Im­planted de­fib­ril­la­tors of­ten re­main ac­ti­vated un­til the very end, for ex­am­ple, even for those in hospice.

A fifth of heart patients with de­fib­ril­la­tors get shocked by them in the last few weeks of life, and 8 per­cent get shocked min­utes be­fore dy­ing. Most patients are never told that they can ask that the de­fib­ril­la­tors be turned off.

“Get­ting shocks at the end of life is not re­ally help­ing patients live longer or bet­ter,” said Dr. Larry Allen, a heart fail­ure spe­cial­ist at the Univer­sity of Colorado and an au­thor of the study.

Car­di­ol­o­gists thrive on the dra­matic sav­ing of lives, said Dr. Michael Bris­tow, a car­di­ol­o­gist at the Univer­sity of Colorado Den­ver. They de­vote their pro­fes­sional lives to res­cu­ing patients hav­ing heart at­tacks and bring­ing them back from the brink.

End-of-life care is not typ­i­cally their fo­cus; nei­ther do they spend much time pon­der­ing what some of their patients may ex­pe­ri­ence in the fu­ture. “Those who go into car­di­ol­ogy are not nec­es­sar­ily ones who want to deal with death and dy­ing,” Bris­tow said.

The very na­ture of end-stage heart fail­ure makes it all the more dif­fi­cult to pre­pare.

“Very few patients un­der­stand the tra­jec­tory of the dis­ease,” said Dr. Lynne Warner Steven­son, a heart fail­ure spe­cial­ist at Van­der­bilt Univer­sity. And of­ten doctors do not tell patients what to ex­pect.

Dr. Ellen Hum­mel of the Univer­sity of Michi­gan, one of a small num­ber of doctors spe­cial­iz­ing in car­di­ol­ogy pal­lia­tive care, said the typ­i­cal pa­tient with can­cer will usu­ally ex­pe­ri­ence a “fairly pre­dictable” de­cline.

“They will be less able to take care of them­selves,” she said. “They will be more symp­to­matic and come back to the hos­pi­tal more fre­quently. And once this starts, it will prob­a­bly con­tinue un­til they die. Most peo­ple can see the end com­ing.” ‘Put me in a hospice’

But patients with end-stage heart fail­ure are more likely to have wild swings, Hum­mel said, veer­ing from feel­ing bet­ter to be­ing ter­ri­bly ill.

“It is con­fus­ing to both the pa­tient and provider. Are they ac­tu­ally dy­ing, or can we res­cue them from a par­tic­u­lar episode of wors­en­ing?”

Allen re­cently dis­cussed all this with a pa­tient, Ed Har­vey.

Har­vey, 75, has an im­planted de­fib­ril­la­tor, and his heart is weak­en­ing, pump­ing pro­gres­sively less blood. Allen gave him med­i­ca­tions that helped for a while, but, Allen said, “we have maxed out on what can be done.”

He can­not say with any cer­tainty how long Har­vey has. But now is the time, Allen told him, to talk about the end of life.

Har­vey still feels pretty good, but “when you have con­ges­tive heart fail­ure and it is not get­ting any bet­ter, you know that day is go­ing to come,” he said.

His only medical op­tion left is an im­plantable pump. He knows that soon he will need full-time care.

“I have elected that if it got to that point,” he said, “put me in a hospice and let me go.”

Sean Proctor pho­tos / New York Times

Ricky Hurst, who car­ries a bat­tery-pow­ered and sur­gi­cally im­planted heart pump, was told by doctors to get his af­fairs in or­der in 2012 as his heart fail­ure wors­ened.

Hurst dis­cov­ered there are no widely ac­cepted guide­lines for care as those with heart fail­ure near death.

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