Where birth meets death

Peri­na­tal hospice care pre­pares par­ents for the end, at life’s be­gin­ning

Winnipeg Free Press - SundayXtra - - WORLD - By Danielle Pa­que­tte

THE baby who would soon die ar­rived at 34 weeks, eyes shut, squawk­ing. Her fa­ther cut the um­bil­i­cal cord with a pair of sil­ver scis­sors. A priest in blue scrubs sprin­kled holy wa­ter on her fore­head. A pho­tog­ra­pher cir­cled the de­liv­ery room, cap­tur­ing her last mo­ments.

And Cath­leen Warner qui­etly mar­velled: my baby is cry­ing.

The doc­tor had said the in­fant’s lungs could never fill with air. Pre­na­tal test­ing five months ear­lier had re­vealed a chro­mo­so­mal ab­nor­mal­ity called tri­somy 18. “In­com­pat­i­ble with life,” the physi­cian told her on the Satur­day phone call. Warner had dropped to her knees in the kitchen.

Now the baby’s heart­beat was fad­ing. But she was still breath­ing. Per­haps they’d have at least five min­utes to­gether, Warner thought. She kissed the new­born’s cheeks, just like she’d en­vi­sioned, and pre­pared to say good­bye.

This is peri­na­tal hospice, a birth plan that re­volves around death. Thanks to in­creas­ingly so­phis­ti­cated di­ag­nos­tics, fam­i­lies to­day can con­front tragedy with ad­vance no­tice, and a de­ci­sion: should they ter­mi­nate a preg­nancy that can­not sus­tain life, or de­liver a baby who won’t sur­vive long out­side the womb?

This dilemma is steadily creep­ing into Amer­ica’s abor­tion de­bate, with some Repub­li­can law­mak­ers us­ing peri­na­tal hospice as a po­lit­i­cal tool. Over the past decade, anti-abor­tion ac­tivists have worked with leg­is­la­tors to push the care model into main­stream con­scious­ness, pro­mot­ing bills they hope will steer women away from a pro­ce­dure they con­sider mur­der.

Last month, In­di­ana be­came the sixth state to re­quire doc­tors to coun­sel women who have re­ceived fa­tal fe­tal di­ag­noses about peri­na­tal hospice be­fore they ter­mi­nate a preg­nancy.

The care model is a bun­dle of ser­vices, un­teth­ered to a hospi­tal or med­i­cal cen­tre. Hospice nurses and so­cial work­ers help fam­i­lies pre­pare for loss, coach­ing par­ents on what to say to sib­lings and co-work­ers. They take calls at 2 a.m. They rec­om­mend fam­ily ther­a­pists for cou­ples whose re­la­tion­ships strain un­der grief. They teach moth­ers to de­liver painkillers to a dy­ing in­fant, should the baby live long enough to go home.

Peri­na­tal hospice, how­ever, isn’t con­nected to re­li­gion, said Tammy Ruiz Ziegler, a Vir­ginia nurse who started Mary Wash­ing­ton Hospi­tal’s pro­gram in Fred­er­icks­burg, Va., in 2006.

Ruiz Ziegler has met par­ents from both sides of the ide­o­log­i­cal aisle who have de­cided to con­tinue non­vi­able preg­nan­cies. Some feel it helps them grieve, she said. Some want to know they’ve done every­thing they could.

“Eleven years ago, when I first brought this idea up to physi­cians, they stared back at me like there was some­thing gen­uinely wrong with me,” Ruiz Ziegler said.

“To­day those same doc­tors are my staunch­est sup­port­ers.”

They’re ac­knowl­edg­ing a de­mand for an al­ter­na­tive to abor­tion for women car­ry­ing non-vi­able fe­tuses, a need that pre­vi­ously re­ceived lit­tle at­ten­tion, she said.

Be­fore tech­nol­ogy of­fered fam­i­lies any warn­ing, doc­tors who de­liv­ered ter­mi­nally ill or still­born ba­bies would of­ten take them away from their moth­ers to die. In the 1970s, as ge­netic test­ing gained promi­nence, par­ents moved to­ward ex­press­ing their own pref­er­ences. Moth­ers and fathers re­quested to hold their ba­bies, if only for a minute.

A chil­dren’s hospi­tal in Den­ver be­came the first in the U.S. to de­velop hospice care for ter­mi­nally ill in­fants in 1980, ac­cord­ing to the Catholic Health As­so­ci­a­tion of the United States. The pro­gram started as a sep­a­rate room for griev­ing fam­i­lies in the neona­tal in­ten­sive care unit. Psy­chi­a­trists in­structed nurses on how to talk to par­ents in mo­ments of stress.

Peri­na­tal hospice grew as more par­ents con­nected on­line and learned about what has since be­come a flour­ish­ing com­mu­nity, Ruiz Ziegler said. Most hos­pi­tals will ac­com­mo­date a par­ent’s end- of-life wishes, if they ask. But hospice care cre­ates an es­pe­cially gen­tle en­vi­ron­ment with pro­fes­sion­als trained to han­dle de­spair.

By 2006, when Ruiz Ziegler started, about 40 med­i­cal cen­tres in the U.S. had some type of for­mal peri­na­tal hospice pro­gram, ac­cord­ing to Peri­na­talHospice.org, a web­site that tracks for­mal pro­grams. To­day, there are 202.

“Af­ter a di­ag­no­sis, I ask the par­ents, ‘What would you like to see hap­pen?’” Ruiz Ziegler said. “We tai­lor the ex­pe­ri­ence en­tirely to them.” Fam­i­lies can in­vite a re­li­gious leader into the de­liv­ery room. They mould their in­fant’s foot­prints in clay. They sing lul­la­bies, pre­pare bub­ble baths and hire a pho­tog­ra­pher.

Ruiz Ziegler stays nearby to pro­vide emo­tional sup­port or pain med­i­ca­tion for a baby who ap­pears un­com­fort­able. A child can live for min­utes, she said, or weeks.

I Nre­cent months, peri­na­tal hospice has emerged at the cen­tre of the de­bate in the U.S. over when life starts and how it should end. In­di­ana’s law, which takes ef­fect July 1, re­quires the state health de­part­ment to cre­ate brochures about the ser­vice. Gov. Mike Pence (R) called it “a com­pre­hen­sive pro-life mea­sure that af­firms the value of all hu­man life.”

The man­date’s au­thors bor­rowed a strat­egy from na­tional anti-abor­tion groups such as Amer­i­cans United for Life and Na­tional Right to Life, which pro­vide model lan­guage about abor­tion al­ter­na­tives to state law­mak­ers.

Mary Spauld­ing Balch, di­rec­tor of state leg­is­la­tion for Na­tional Right to Life, started work­ing on peri­na­tal hospice laws about 10 years ago, she said, when Min­nesota be­came the first state to re­quire doc­tors


Cath­leen Warner holds a teddy bear with the recorded heart­beat of her daugh­ter Erin.

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