Hospi­tal re­leased vet who re­fused study

The Washington Times Weekly - - National - BY AU­DREY HUD­SON

An Army vet­eran seek­ing treat­ment for his sud­den loss of mo­tor skills was turned away from a vet­er­ans hospi­tal in the Bronx, N.Y., in May 2007 af­ter he re­fused to par­tic­i­pate in a hu­man sub­ject ex­per­i­ment on Alzheimer’s dis­ease.

Joe Fitzger­ald, 74, died of Creutzfeldt-Jakob dis­ease — the hu­man form of mad cow dis­ease — less than a month af­ter be­ing dis­missed without di­ag­no­sis from James J. Peters VA Med­i­cal Cen­ter.

His widow is de­mand­ing an­swers from the Depart­ment of Vet­er­ans Af­fairs (VA) as to whether hu­man re­search test­ing is tak­ing a pr ior ity over the health care of vet­er­ans at its hos­pi­tals.

“I want them to be held ac­count­able for this, to pre­vent this from hap­pen­ing to some­one else,” Aimee Fitzger­ald said. “Noth­ing could have saved Joe, but the care there was hate­ful and in­com­pe­tent.”

Mrs. Fitzger­ald said the re­search study doc­tor, Chris­tine Bergmann, told the fam­ily that her hus­band’s par­tic­i­pa­tion in the study would en­able re­searchers to make a quicker di­ag­no­sis of his con­di­tion.

But VA of­fi­cials said Dr. Bergmann did not have the au­thor­ity to of­fer a di­ag­no­sis.

“[The study] has very lit­tle to do with their di­ag­no­sis, and it is not con­sis­tent with what occurred,” said MaryAnn Musumeci, di­rec­tor of the Bronx hospi­tal.

“That’s mind-bog­gling. That’s not true,” Mrs. Fitzger­ald said. “Dr. Bergmann made it ver y clear to us that the ben­e­fit of sign­ing up for the study would be that she would de­velop an in­di­vid­ual pro­file of Joe that would help them to ar­rive at a di­ag­no­sis faster.”

The VA made sev­eral of­fi­cials avail­able for com­ment, but not Dr. Bergmann.

VA of­fi­cials and the Fitzger­ald fam­ily also dif­fer over the cir­cum­stances of Mr. Fitzger­ald’s dis­charge and whether the hospi­tal pro­vided care.

Miss Musumeci said Mr. Fitzger­ald was ad­mit­ted only for test­ing and clin­i­cal eval­u­a­tion and that he was re­ferred back to his physi­cian at Cas­tle Point VA Hospi­tal for fur­ther care and test­ing.

“He was re­leased be­cause his work-up was com­plete. We did all the tests we could have done,” Miss Musumeci said.

In an in­ter view with The Wash­ing­ton Times, VA of­fi­cials said they knew Mr. Fitzger­ald was suf­fer­ing from a rapidly de­bil­i­tat­ing dis­ease.

Asked why the hospi­tal re­leased in­stead of treat­ing the vet­eran, Miss Musumeci said, “He was in need of hospice care, and that is what Cas­tle Point pro­vides.”

Cas­tle Point VA Hospi­tal, a part of the VA Hud­son Val­ley Health­care Sys­tem in Dutchess County, N.Y., does not iden­tify it­self as a hospice fa­cil­ity and does not ad­ver­tise its hospice care among its pa­tient ser­vices.

Mrs. Fitzger­ald said she was ad­vised to keep fu­ture test­ing ap­point­ments with Cas­tle Point and that the Bronx hospi­tal never rec­om­mended hospice care or said they knew her hus­band’s health was de­te­ri­o­rat­ing.

Mr. Fitzger­ald’s dis­charge pa­pers stated that he was in sta­ble con­di­tion.

The Bronx VA hospi­tal in­ci­dent is the lat­est to raise ques­tions about the ethics of hu­man sub­ject re­search ex­per­i­ments con­ducted at VA fa­cil­i­ties na­tion- wide.

A re­cent in­ves­ti­ga­tion of ex­per­i­ments con­ducted at an Arkansas vet­er­ans hospi­tal un­cov­ered ram­pant vi­o­la­tions, in­clud­ing miss­ing con­sent forms, se­cret HIV test­ing and fail­ure to re­port more than 100 deaths of sub­jects par­tic­i­pat­ing in stud­ies.

More­over, Iraq war vet­eran James El­liott told a con­gres­sional com­mit­tee in July that he sought treat­ment from the VA for post­trau­matic stress dis­or­der (PTSD) and in­stead was per­suaded to join a smok­ing-ces­sa­tion study. While tak­ing a smok­ing-ces­sa­tion drug, he suf­fered a psy­chotic episode.

Mr. El­liott said the first doc­tor he vis­ited at the Cen­tral Arkansas Vet­er­ans Health­care Sys­tem in Lit­tle Rock to seek treat­ment for PTSD “wasn’t con­cerned about my day-to-day life. [. . . ] He wasn’t con­cerned with my war­time ex­per iences. He wasn’t con­cerned about if I was go­ing to make it home safely af­ter the ap­point­ment.”

Arthur Ca­plan, one of the na­tion’s premier med­i­cal ethi­cists and di­rec­tor of the Cen­ter for Bioethics at the Uni­ver­sity of Penn­syl­va­nia, said the first obli­ga­tion of any care­giver is to treat the pa­tient.

“It is only when there is no ther­apy, or the ther­apy that is avail­able is of doubt­ful util­ity, that some­one can be re­cruited to re­search,” Mr. Ca­plan said.

“Ev­ery re­searcher and ev­ery in­sti­tu­tion that does re­search must be sure to make an ac­cu­rate di­ag­no­sis of a pa­tient, to then of­fer them what­ever ther­apy is avail­able at the in­sti­tu­tion, to give them all their op­tions in terms of treat­ment any­where else and then and only then to pur­sue the pos­si­bil­ity of try­ing some­thing new in a re­search study,” Mr. Ca­plan said.

“No one should ever be pe­nal­ized for fail­ing to vol­un­teer for a study, ever,” Mr. Ca­plan said.

“The goal of any med­i­cal en­counter must be first and fore­most to pro­vide the lat­est and best care when care is avail­able,” Mr. Ca­plan said. “The chance to par­tic­i­pate as a sub­ject in re­search has to take a secondary role to re­ceiv­ing care as a pa­tient.”

Miss Musumeci, di­rec­tor of the Bronx hospi­tal and a reg­is­tered nurse, said par­tic­i­pa­tion in the stud­ies is rou­tinely of­fered to pa­tients seek­ing care at the VA fa­cil­ity, in­clud­ing healthy pa­tients who may be ad­mit­ted to stud­ies as con­trol sub­jects.

Mary Sano, the Bronx hospi­tal’s di­rec­tor of re­search, said that “the op­por­tu­nity to par­tic­i­pate in re­search is wide­spread” and does not in­ter­fere with clin­i­cal treat­ment.

“The re­search team is com­pletely in­de­pen­dent of the clin­i­cal team, and the clin­i­cal team has pri­or­ity and de­ter­mines if a per­son is ap­proach­able,” Miss Sano said. “If they say no, the re­search team goes away.”

Miss Musumeci said that many hospi­tal pa­tients wel­come the op­por­tu­nity to par­tic­i­pate in stud­ies be­cause “they ap­pre­ci­ate the op­por­tu­nity to stay busy.”

Mrs. Fitzger­ald said the VA re­searchers wanted her hus­band to en­roll in the Alzheimer’s ex­per­i­ment to ob­serve the nat­u­ral and rav­aging course of the dis­ease and his even­tual death.

Vera Sharav, pres­i­dent and founder of the Al­liance for Hu­man Re­search Pro­tec­tion, a pa­tient-ad­vo­cacy group, said the cir­cum­stances faced by the Fitzger­ald fam­ily are “not unique.”

“You come to a hospi­tal in crit­i­cal need and you want care, even if you are not cured, and in­stead they say they are go­ing to ob­ser ve the de­gen­er­a­tion and death?”

PHO­TO­GRAPH PRO­VIDED BY FITZGER­ALD FAM­ILY UN­DI­AG­NOSED: Joe Fitzger­ald, 74, died in June 2007, less than a month af­ter be­ing turned away.

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