A trans­plant-ethics fight for the men­tally dis­abled

Data shows wide dis­par­ity in who gets an or­gan

The Washington Post Sunday - - FRONT PAGE - BY LENNY BERN­STEIN

Paul Corby needs a new heart. On that there is no dis­pute. The same rare dis­ease that killed his fa­ther at 27 is de­stroy­ing his left ven­tri­cle. While there is no cure or surgery that might re­pair the dam­age, a heart trans­plant could ex­tend his life con­sid­er­ably.

But Corby, who lives in Pottsville, Pa., is autis­tic, suf­fers from sev­eral psy­cho­log­i­cal con­di­tions and takes 19 med­i­ca­tions. When he ap­plied to the trans­plant pro­gram at the Univer­sity of Penn­syl­va­nia in 2011, he was re­jected be­cause of his “psy­chi­atric is­sues, autism, the com­plex­ity of the process . . . and the un­known and un­pre­dictable ef­fect of steroids on be­hav­ior,” ac­cord­ing to the de­nial let­ter sent to his mother.

“I couldn’t even be­lieve this would hap­pen,” Karen Corby said, “that this would be the rea­son in this day and age.”

In fact, men­tally dis­abled peo­ple are turned down for or­gan trans­plants of­ten enough that their rights are a rapidly emerg­ing eth­i­cal is­sue in this cor­ner of medicine, where trans­plant teams have nearly full au­ton­omy to make life-or-death de­ci­sions about who will re­ceive scarce donor or­gans and who will be de­nied.

Be­yond some re­stric­tions im­posed by laws such as the Amer­i­cans With Dis­abil­i­ties Act, the doc­tors, nurses, psy­chol­o­gists and so­cial work­ers at 815 U.S. trans­plant pro­grams are free to take neu­rocog­ni­tive dis­abil­i­ties such as autism into con­sid­er­a­tion any way they want.

As a re­sult, there is wide vari­a­tion from pro­gram to pro­gram. Some teams weigh men­tal and psy­cho­log­i­cal is­sues heav­ily in de­cid­ing whether some­one should be el­i­gi­ble for the pre­cious gift of a heart, liver, kid­ney or lung. Oth­ers do not. A few even ad­mit that they au­to­mat­i­cally

rule out peo­ple with cer­tain dis­abil­i­ties. Some pa­tients are re­jected at one med­i­cal cen­ter but ac­cepted at an­other.

“As a so­ci­ety, we want in­di­vid­ual trans­plant cen­ters to main­tain dis­cre­tion about putting peo­ple on their list or not. We don’t want gov­ern­ment play­ing doc­tor at the bed­side,” said Scott Halpern, an ethi­cist at the Univer­sity of Penn­syl­va­nia med­i­cal cen­ter that re­jected Corby. “Hav­ing said that, the cur­rent sys­tem lacks the ac­count­abil­ity that we might wish it to have. There are vir­tu­ally no checks and bal­ances on the de­ci­sions that trans­plant cen­ters make.”

When David Mag­nus, di­rec­tor of the Cen­ter for Biomed­i­cal Ethics at Stan­ford Univer­sity Med­i­cal School, sur­veyed 50 pe­di­atric heart, liver and kid­ney trans­plant pro­grams in 2008, he found that 39 per­cent rarely or never con­sid­ered neu­rode­vel­op­men­tal de­lays in de­cid­ing whether to list some­one as el­i­gi­ble, and 43 per­cent al­ways or usu­ally did. The re­sults also var­ied de­pend­ing on whether the dis­abil­ity was mod­er­ate, se­vere or pro­found and which or­gan was be­ing trans­planted.

“It does ap­pear that the pro­grams use this psy­choso­cial cri­te­rion to dis­tin­guish among can­di­dates, although con­sen­sus does not ex­ist within the field to guide its us­age,” the re­searchers wrote in the jour­nal Pe­di­atric Trans­plan­ta­tion.

Some ef­forts are un­der­way to change that. In Oc­to­ber, 30 mem­bers of Congress called on the Depart­ment of Health and Hu­man Ser­vices’ civil rights of­fice to is­sue in­struc­tions that dis­crim­i­na­tion in or­gan trans­plan­ta­tion vi­o­lates the Amer­i­cans With Dis­abil­i­ties Act. They also want the agency to tell trans­plant teams to ac­count for a dis­abled per­son’s sup­port sys­tem in de­cid­ing whether he or she will be able to stick to a post­op­er­a­tive health­care reg­i­men, which is typ­i­cally a fac­tor in eval­u­at­ing pa­tients for a trans­plant.

An HHS spokesper­son said in a state­ment that the agency is work­ing “to clar­ify the obli­ga­tions of cov­ered en­ti­ties par­tic­i­pat­ing in the trans­plant process and to pro­vide equal ac­cess to their pro­grams to in­di­vid­u­als with dis­abil­i­ties.”

Four states have passed laws con­tain­ing sim­i­lar re­stric­tions. In Penn­syl­va­nia, State Sen. John Sa­batina (D) has in­tro­duced “Paul’s Law,” an at­tempt to out­law dis­crim­i­na­tion in trans­plant de­ci­sions that is named af­ter Corby. And Halpern sug­gested in the New Eng­land Jour­nal of Medicine last month that re­gional pan­els should be es­tab­lished to ad­ju­di­cate dis­putes over el­i­gi­bil­ity for a trans­plant.

When a doc­tor de­ter­mines the need for a trans­plant, pa­tients gen­er­ally ap­proach the near­est med­i­cal cen­ter that per­forms the op­er­a­tions. (Shop­ping for the best lo­ca­tion is not un­known, how­ever, and some peo­ple with the re­sources to quickly get to al­most any cen­ter when an or­gan be­comes avail­able can be listed at mul­ti­ple places.) Once el­i­gi­bil­ity is es­tab­lished, a po­ten­tial re­cip­i­ent is reg­is­tered on the wait­ing list con­trolled by the United Net­work for Or­gan Shar­ing, a non­profit or­ga­ni­za­tion that con­tracts with the gov­ern­ment to dis­trib­ute or­gans.

Though more trans­plants were per­formed in 2016 than ever be­fore, avail­able or­gans are still in dras­ti­cally short sup­ply. More than 118,000 peo­ple are wait­ing for hearts, lungs, kid­neys, liv­ers and other or­gans. Many wait for years, and 22 peo­ple on the list die each day with­out re­ceiv­ing a trans­plant.

De­cid­ing who is el­i­gi­ble for an or­gan can be a wrench­ing process for the trans­plant teams at each med­i­cal cen­ter, ex­perts said. Be­yond med­i­cal is­sues, teams as­sess any­thing that might in­flu­ence a trans­plant’s suc­cess or fail­ure — drug and al­co­hol use, smok­ing, fam­ily sup­port, abil­ity to pay med­i­cal bills, the pa­tient’s like­li­hood of tak­ing im­muno­sup­pres­sant med­i­ca­tions faith­fully and many other fac­tors.

Ex­perts cau­tioned that in­di­vid­ual de­ci­sions of­ten are much more com­plex than they may seem be­cause teams have ac­cess to per­sonal in­for­ma­tion that is not ap­par­ent to out­siders.

But hu­man bias is in­evitable. In a much larger sur­vey of adult and pe­di­atric trans­plant pro­grams that is still be­ing compiled, Mag­nus and his col­leagues have found sig­nif­i­cant dif­fer­ences in el­i­gi­bil­ity de­ci­sions based on in­tel­lec­tual dis­abil­ity and ge­netic dis­or­ders such as Down syn­drome. They also dis­cov­ered wide vari­a­tion based on fac­tors such as HIV sta­tus and whether an ap­pli­cant is un­doc­u­mented.

Teenagers, noted Arthur Ca­plan, di­rec­tor of med­i­cal ethics at the New York Univer­sity School of Medicine, fare more poorly than adults in trans­plant out­comes be­cause of the re­bel­lious­ness of that age group.

“Yet we don’t ex­clude them,” he said. “So­ci­ety’s mes­sage has been — whether it’s build­ing a kneel­ing bus or a ramp at the li­brary or main­stream­ing a kid at school — try to do what you can to in­te­grate.”

Peo­ple with in­tel­lec­tual dis­abil­i­ties, how­ever, have long fought the be­lief that their deficits mean their lives are less mean­ing­ful than those of nondis­abled peo­ple. That bias seeps into trans­plant team de­ci­sions, said Sa­man­tha Crane, di­rec­tor of pub­lic pol­icy for the Autis­tic Self Ad­vo­cacy Net­work.

“They’ve of­ten been steeped in a very med­i­cal­ized view of dis­abil­ity, in which they see peo­ple with dis­abil­ity hav­ing a lower qual­ity of life,” she said. “And that’s not true.” The group be­lieves that in­tel­lec­tual dis­abil­ity should never be used as the sole rea­son to deny a trans­plant and wants to re­quire trans­plant de­ci­sion-mak­ers to con­sider pa­tients’ sup­port net­works when they de­cide el­i­gi­bil­ity.

There is lit­tle data on trans­plant out­comes among the cog­ni­tively dis­abled, but the avail­able in­for­ma­tion shows that they gen­er­ally fare as well as non-dis­abled peo­ple in the years af­ter surgery.

Paul Corby’s case shows how eth­i­cally com­plex th­ese de­ci­sions can be. In ad­di­tion to his autism and heart dis­or­der, which is a form of car­diomy­opa­thy, Corby suf­fers from anx­i­ety and other psy­cho­log­i­cal dif­fi­cul­ties, ac­cord­ing to his mother. As a teenager, he was di­ag­nosed with a mood dis­or­der and im­pulsec­on­trol dis­or­der, ac­cord­ing to a let­ter from his psy­chi­a­trist that rec­om­mended him for a trans­plant, which added that he had re­cov­ered sig­nif­i­cantly from men­tal and emo­tional dis­tur­bances.

At nearly 28, Corby car­ries a Princess Peach doll wher­ever he goes. He re­quires some su­per­vi­sion by other adults. He is prone to oc­ca­sional out­bursts that have cre­ated con­flict with a neigh­bor and has moved in with an aunt and un­cle a mile from his home.

Yet he man­ages his med­i­ca­tion him­self, writes fiction and func­tions in­de­pen­dently much of the time. He com­mu­ni­cates well. In the let­ter, his psy­chi­a­trist said “there is no clin­i­cal rea­son why he would not ben­e­fit from cardiac trans­plant” and noted the strong sup­port Corby re­ceives from his fam­ily.

“I cut down on the junk food. I use the tread­mill. I don’t smoke. I don’t drink al­co­hol. I don’t chew to­bacco,” Corby said in a tele­phone in­ter­view. But the trans­plant team mem­bers who de­clined to deem him el­i­gi­ble “didn’t care” about his ef­forts, he said, sug­gest­ing it was in­ap­pro­pri­ate for him to carry a doll and ex­press­ing con­cern that he couldn’t name all 19 of his med­i­ca­tions, he said.

The Univer­sity of Penn­syl­va­nia Health Sys­tem de­clined to make any­one avail­able for an in­ter­view but re­leased a state­ment from Susan Phillips, Penn Medicine’s se­nior vice pres­i­dent for pub­lic af­fairs, that said, in part:

“When in­di­vid­u­als are re­ferred for trans­plant eval­u­a­tion here, all as­pects of their med­i­cal sta­tus are re­viewed. This may in­clude the po­ten­tial im­pact of other ex­ist­ing health prob­lems on the suc­cess of the surgery it­self, and the po­ten­tial in­ter­ac­tion be­tween a pa­tient’s ex­ist­ing drug ther­a­pies and the drugs that would be nec­es­sary to stop trans­plant re­jec­tion. Given the crit­i­cal­ity of post-surgery care fol­low­ing any solid or­gan trans­plant, the pa­tient’s sup­port sys­tem is also taken into ac­count . . . . The ul­ti­mate de­ci­sion about whether trans­plant surgery is ap­pro­pri­ate is, of course, made on an in­di­vid­ual ba­sis.”

Corby and his fam­ily main­tain that the de­nial was un­just. “It’s in­sane. It’s crazy,” he said. “I thought that was il­le­gal.”

“We don’t want gov­ern­ment play­ing doc­tor at the bed­side. Hav­ing said that, the cur­rent sys­tem lacks the ac­count­abil­ity that we might wish it to have.” Scott Halpern, an ethi­cist at the Univer­sity of Penn­syl­va­nia med­i­cal cen­ter that re­jected Paul Corby’s ap­pli­ca­tion for a heart trans­plant

KAREN CORBY

Paul Corby, 27, who is autis­tic and suf­fers from sev­eral con­di­tions, was re­jected for a heart trans­plant by the Univer­sity of Penn­syl­va­nia Health Sys­tem due to con­cerns in­clud­ing his “psy­chi­atric is­sues.”

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