‘Com­fort care’ shines light on dy­ing

Bar­bara Bush’s de­ci­sion on her ter­mi­nal ill­ness draw­ing praise

USA TODAY International Edition - - NEWS - Melissa Bai­ley and JoNel Alec­cia

As she nears death at age 92, for­mer first lady Bar­bara Bush’s an­nounce­ment that she is seek­ing “com­fort care” is shin­ing a light — and stir­ring de­bate — on what it means to stop try­ing to fight ter­mi­nal ill­ness.

Bush, the wife of for­mer pres­i­dent Ge­orge H.W. Bush, has been suf­fer­ing from con­ges­tive heart fail­ure and chronic ob­struc­tive pul­monary dis­ease, says fam­ily spokesman Jim McGrath.

In a pub­lic state­ment Sun­day, the fam­ily an­nounced she has de­cided “not to seek ad­di­tional med­i­cal treat­ment and will fo­cus on com­fort care.”

The an­nounce­ment comes amid a na­tional ef­fort to de­fine and doc­u­ment pa­tients’ wishes and con­sider al­ter­na­tives be­fore they are placed on what has been de­scribed as a “con­veyor belt” of costly med­i­cal in­ter­ven­tions aimed at pro­long­ing life.

Ellen Good­man, co-founder of the Con­ver­sa­tion Project, which en­cour­ages fam­i­lies to dis­cuss and doc­u­ment their end-of-life pref­er­ences, ap­plauded the Bush fam­ily an­nounce­ment.

“It sounds like this forth­right, out­spo­ken woman has made her wishes known, and the fam­ily is stand­ing by her,” Good­man said.

“It makes per­fectly good sense at her age, with her fail­ing health, that she would say at some point, ‘Life’s been good, and while you al­ways want more, it’s enough,’ ” said Joanne Lynn, di­rec­tor of the pro­gram to im­prove el­der care at Al­tarum In­sti­tute.

Lynn worked with Bar­bara Bush years ago when she was a con­gres­sional spouse vol­un­teer­ing at the Wash­ing­ton Home for chron­i­cally ill pa­tients. Bush helped with the found­ing of the hospice pro­gram there.

“We have so few ex­am­ples in vis­i­ble lead­er­ship po­si­tions” of pub­lic fig­ures pro­mot­ing pal­lia­tive care, she said.

“It’s a per­sonal de­ci­sion that she didn’t have to share, but hope­fully it will en­cour­age oth­ers to think about their choices, talk about their choices, doc­u­ment their choices and have those choices hon­ored,” said Nathan Kot­tkamp, founder and chair of Na­tional Health­care De­ci­sions Day.

Thou­sands were ex­pected to fo­cus on their end-of-life pref­er­ences Mon­day, which has been des­ig­nated as Na­tional Health Care De­ci­sions Day since 2008.

Haider War­raich, a fel­low in car­dio­vas­cu­lar medicine at Duke Uni­ver­sity Med­i­cal Cen­ter and au­thor of the book

Mod­ern Death, also ap­plauded the Bush fam­ily for putting the phrase “com­fort care” into the pub­lic sphere so that other peo­ple can con­sider it “a vi­able op­tion at the end of life.”

But he said the fam­ily state­ment also cre­ates con­fu­sion about the mean­ing of “com­fort care,” by sug­gest­ing that it en­tails stop­ping med­i­cal treat­ment.

“Com­fort care” usu­ally refers to pal­lia­tive care, which fo­cuses on man­ag­ing pa­tients’ symp­toms to keep them com­fort­able and re­tain their dig­nity, he said.

“One of the com­mon myths about pal­lia­tive care is that they are be­ing de­nied med­i­cal help,” War­raich said.

For heart fail­ure pa­tients, he said, “com­fort care” usu­ally means opt­ing not to use a breath­ing ma­chine or CPR. But pa­tients con­tinue to re­ceive treat­ment, in­clud­ing mor­phine to ease short­ness of breath and di­uret­ics to re­move ex­cess fluid from their lungs, he said.

Heart fail­ure pa­tients, he said, of­ten re­ceive “es­ca­lat­ing med­i­cal treat­ments un­til days be­fore the end of life.”

“By bring­ing this into the sphere of dis­cus­sion,” War­raich said, “we can start think­ing about com­fort and pal­li­a­tion long be­fore they are in the clutches of death.”

Kaiser Health News is part of the Henry J. Kaiser Fam­ily Foun­da­tion.

“It sounds like this forth­right, out­spo­ken woman has made her wishes known, and the fam­ily is stand­ing by her.”

Ellen Good­man Co-founder of the Con­ver­sa­tion Project

TIM DIL­LON/USA TO­DAY 1997

Bar­bara Bush, the wife of for­mer pres­i­dent Ge­orge H.W. Bush, has de­cided “not to seek ad­di­tional med­i­cal treat­ment,” a spokesman says.

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