Law leaves the loved ones of men­tally ill pa­tients on the side­lines— some­times with tragic re­sults

Chicago Sun-Times - - OPINION - Liz Sz­abo

Chip and Gail An­gell would have paid any price to save their son. They didn’t get the chance. Chris, 39, who suf­fered from schizophre­nia, re­fused to al­low his doc­tors to talk to his par­ents, even though they were his pri­mary care­givers.

So the An­gells weren’t able to cor­rect their son’s med­i­cal chart, which in­cor­rectly listed the young man as unin­sured. They weren’t able to plead with doc­tors not to base their son’s treat­ment on cost.

“When­ever we tried to get Chris into the hos­pi­tal, we al­ways ran into the fact that doc­tors wouldn’t talk to us,” says Chip An­gell, of Brook­lin, Maine, who says his son’s doc­tor never re­turned his calls. “Some doc­tors think they’re pro­tect­ing the pri­vacy rights of the pa­tient. Oth­ers sim­ply use pri­vacy as an ex­cuse be­cause they don’t want to talk to some­one with an idea con­trary to their own, or be­cause they can’t be both­ered to call some­one back.”

Al­though a fed­eral law on pa­tient pri­vacy was writ­ten to pro­tect pa­tients’ rights, the An­gells and a grow­ing num­ber of men­tal health ad­vo­cates say the law has harmed the care of adults with se­ri­ous men­tal ill­ness, who of­ten de­pend on their fam-

ilies for care but don’t al­ways rec­og­nize that they’re sick or need help.

The fed­eral law, called the Health In­sur­ance Porta­bil­ity and Ac­count­abil­ity Act, or HI­PAA, for­bids health providers from dis­clos­ing a pa­tient’s med­i­cal in­for­ma­tion with­out con­sent.

Un­like pa­tients with phys­i­cal con­di­tions, peo­ple with se­ri­ous men­tal ill­ness of­ten need help mak­ing de­ci­sions and tak­ing care of them­selves be­cause their ill­ness im­pairs their judg­ment, says Jef­frey Lieber­man, chair­man of psy­chi­a­try at the Columbia Univer­sity Col­lege of Physicians and Sur­geons and di­rec­tor of the New York State Psy­chi­atric In­sti­tute. In some cases, pa­tients may not re­al­ize they’re sick.

Ex­clud­ing fam­i­lies can have a dev­as­tat­ing im­pact on such pa­tients, Lieber­man says.

Many health providers don’t un­der­stand what HI­PAA al­lows them to say. As a re­sult, they of­ten shut out fam­i­lies, even in cir­cum­stances in which they’re legally al­lowed to share in­for­ma­tion, says Ron Man­der­scheid, ex­ec­u­tive di­rec­tor of the Na­tional As­so­ci­a­tion of County Be­hav­ioral Health and De­vel­op­men­tal Dis­abil­ity Di­rec­tors.

Some doc­tors refuse to lis­ten to fam­i­lies such as the An­gells, al­though do­ing so doesn’t vi­o­late HI­PAA. Oth­ers ex­clude fam­i­lies even when pa­tients them­selves don’t ob­ject.

While many peo­ple in the men­tal health com­mu­nity agree there’s a prob­lem, ad­vo­cates dis­agree about how to fix it.

Three mem­bers of Congress — Rep. Doris Mat­sui, D- Calif., Sen. Chris Mur­phy, D- Conn., and Rep. Tim Mur­phy, R- Pa. — have in­tro­duced leg­is­la­tion to ed­u­cate health care providers about what HI­PAA does and doesn’t per­mit.

Tim Mur­phy, a child psy­chol­o­gist, wants to change the law it­self, cre­at­ing a spe­cial ex­cep­tion to the pri­vacy rule in cases in which the health of peo­ple with se­ri­ous men­tal ill­ness would suf­fer if their fam­i­lies aren’t in­volved in their care.

Op­po­nents of Tim Mur­phy’s bill charge that it would tram­ple on a pa­tient’s pri­vacy rights. With­out the guar­an­tee of con­fi­den­tial­ity, some peo­ple with men­tal ill­ness would avoid seek­ing treat­ment, says Jen­nifer Mathis, di­rec­tor of pro­grams at the Bazelon Cen­ter for Men­tal Health Law.

Some say that the med­i­cal pro­fes­sion needs to un­dergo a cul­tural change so doc­tors are en­cour­aged to reach out to the care­givers of peo­ple with se­ri­ous men­tal ill­ness, rather than shun them.

The An­gells say HI­PAA de­nied them the chance to pre­vent a tragedy.

When their son was dis­charged from the hos­pi­tal, a doc­tor wrote him a pre­scrip­tion for low- cost pills in­stead of a more ex­pen­sive in­jectable treat­ment, Chip An­gell says. That was in spite of the fact that the young man had a long his­tory of re­fus­ing to take pills and was “do­ing very well” on the in­jec­tions, med­i­cal records show.

Their son, a gifted ten­nis player with a 7-year- old daugh­ter, sank into a deep de­pres­sion as the ef­fects of the in­jectable med­i­ca­tion wore off.

In April 2012, six weeks af­ter be­ing dis­charged from the hos­pi­tal, he tried to kill him­self by at­tach­ing a hose to the ex­haust pipe of the fam­ily Volvo and fill­ing the in­te­rior with deadly car­bon monox­ide gas. The car over­heated and caught fire, with their son in­side. Chris didn’t sur­vive.


Psy­chi­a­trists have a long his­tory of keep­ing fam­i­lies at arm’s length, says Har­vey Rosen­thal, ex­ec­u­tive di­rec­tor of the New York As­so­ci­a­tion of Psy­chi­atric Re­ha­bil­i­ta­tion Ser­vices. For much of the 20th cen­tury, many psy­chi­a­trists saw par­ents as the source of a pa­tient’s prob­lems.

Yet to­day, a grow­ing body of re­search demon­strates that fam­i­lies play a cru­cial role in re­cov­ery from se­ri­ous men­tal ill­ness, says Lisa Dixon, a pro­fes­sor of psy­chi­a­try at Columbia Univer­sity Med­i­cal Cen­ter in New York.

Fam­ily in­volve­ment is “ex­traor­di­nar­ily im­por­tant” for peo­ple with se­ri­ous men­tal ill­ness, says Dixon, who di­rects On TrackNY, an in­ten­sive, early in­ter­ven­tion for young peo­ple who ex­pe­ri­ence psy­chosis for the first time. “Of­ten, you have fam­ily mem­bers who are the first to no­tice that some­thing is wrong, who are there to try to help their child and get their child into some sort of treat­ment.”

A re­cent Na­tional In­sti­tutes of Health study, which fo­cused on such early in­ter­ven­tion, found that fam­ily education and sup­port were key parts of a pack­age of care. Young peo­ple who re­ceived this care had bet­ter qual­ity of life and were more likely to re­turn to work or school, ac­cord­ing to a 2015 study pub­lished in the Amer­i­can Jour­nal of Psy­chi­a­try.

A Bri­tish study found that fam­ily in­volve­ment can be life­sav­ing.

Deaths from un­nat­u­ral causes — such as sui­cide, drug abuse and in­juries — were 90% lower among peo­ple with schizophre­nia whose fam­i­lies

Fam­i­lies are of­ten treated “like the en­emy.” Rep. Tim Mur­phy, R-Pa., spon­sor of leg­is­la­tion to al­low more in­for­ma­tion to be shared with care­givers

were in­volved through­out their care, ac­cord­ing to a study that fol­lowed more than 500 pa­tients over 10 years, pub­lished last year in The Jour­nal of Ner­vous and Men­tal Dis­ease.

Fam­i­lies of­ten pro­vide food and hous­ing for their loved ones, help them ap­ply for work or school pro­grams, drive them to ap­point­ments, pick up pre­scrip­tions and co­or­di­nate the care of count­less doc­tors, nurses and so­cial work­ers. When needed, fam­i­lies bail them out of jail.

“When ev­ery­body else goes home, the fam­i­lies are the ones that step up and pro­vide care,” says Ron Hon­berg, na­tional di­rec­tor of pol­icy and le­gal affairs at the Na­tional Al­liance on Men­tal Ill­ness, or NAMI.

Many care­givers feel un­pre­pared to help loved ones with se­ri­ous men­tal ill­ness, which can strike sud­denly in ado­les­cence or young adult­hood. Many say they get lit­tle or no guid­ance from health providers.

“I never re­ally un­der­stood the ill­ness,” says Creigh Deeds, a Vir­ginia state sen­a­tor whose 24-year- old son killed him­self in 2013 af­ter stab­bing his father re­peat­edly.

Deeds says health care providers re­fused to pro­vide even short- term guid­ance about what to do af­ter his son was dis­charged from the hos­pi­tal. “Twice, my son came home from hospi­tals to me,” Deeds says. “I was never given in­struc­tions. I was never given help. ... With­out that in­for­ma­tion, I was wal­low­ing in ig­no­rance.”


NAMI has long rec­og­nized that care­givers need help. Its Fam­ily to Fam­ily pro­gram ed­u­cates peo­ple about the na­ture of men­tal ill­ness and ways to pro­vide sup­port, Dixon says. Fam­i­lies who have a bet­ter un­der­stand­ing of their loved one’s con­di­tion can pro­vide bet­ter care, she says.

“Fam­ily mem­bers need in­for­ma­tion,” Dixon says. “They need to know how to help their child or loved one. They’re stressed out and anx­ious and ter­ri­fied and guilt-rid­den.”

When in doubt, health providers tend to err on the side of with­hold­ing in­for­ma­tion, says Pa­trick Kennedy, a for­mer Rhode Is­land con­gress­man who ad­vo­cates for bet­ter care of the men­tally ill.

Hos­pi­tal ad­min­is­tra­tors, ac­cus­tomed to avoid­ing mal­prac­tice suits, have brought the same de­fen­sive ap­proach to pa­tient pri­vacy, Kennedy says. “The med­i­cal com­mu­nity’s per­cep­tion is that there’s a li­a­bil­ity if they share any kind of in­for­ma­tion,” he says.

Tracey Davis-Wit­myer says health care providers have of­ten re­fused to talk about her brother’s care, even when HI­PAA al­lows it.

The Read­ing, Pa., woman takes care of her 38-year- old brother, who has bipo­lar dis­or­der and in­tel­lec­tual dis­abil­i­ties. Al­though he lives with her, her brother of­ten wan­ders off. Once, he was miss­ing for a week.

Yet when Davis-Wit­myer went to a lo­cal emer­gency room to search for him, hos­pi­tal staff re­fused to even ac­knowl­edge whether he was there. They told her that con­firm­ing his pres­ence in the hos­pi­tal would have vi­o­lated HI­PAA. It would not have.

“Doc­tors are afraid to say any­thing be­cause they think the HI­PAA po­lice are at the door,” says Man­der­scheid, of the Na­tional As­so­ci­a­tion of County Be­hav­ioral Health and De­vel­op­men­tal Dis­abil­ity Di­rec­tors.

In fact, HI­PAA fines are much rarer than many health providers as­sume. The Depart­ment of Health and Hu­man Ser­vices, which over­sees HI­PAA en­force­ment, has fined health providers 30 times since 2003, when the pri­vacy rule took ef­fect, for a to­tal of $ 32.3 mil­lion. None of th­ese fines in­volved the care of peo­ple with men­tal ill­ness or their care­givers.

Care­givers aren’t the only ones frus­trated by HI­PAA.

The law some­times can pre­vent doc­tors from shar­ing in­for­ma­tion with each other, Lieber­man says. That has made it dif­fi­cult for Lieber­man to con­sult on the care of other pa­tients.

Al­though James Cor­nick’s son, who suf­fered from bipo­lar dis­or­der, went to jail six times, his med­i­cal records never fol­lowed him, even within the same cor­rec­tional fa­cil­ity, says Cor­nick, of Des Moines. So when Cor­nick’s son was ar­rested in Jan­uary 2015 for a pa­role vi­o­la­tion, no one put him on sui­cide watch. He stran­gled him­self in his jail cell at age 46

Health and Hu­man Ser­vices has tried to clar­ify what HI­PAA does and doesn’t al­low. In 2014, it is­sued guid­ance about when health providers are al­lowed to share in­for­ma­tion.

Bills in­tro­duced in the House of Rep­re­sen­ta­tives by both Tim Mur­phy, the Penn­syl­va­nia Repub­li­can, and Doris Mat­sui, the Cal­i­for­nia Demo­crat, would re­quire the Sec­re­tary of Health and Hu­man Ser­vices to in­clude that guid­ance into regulation, giv­ing it the force of law.

Leg­is­la­tion from Mat­sui and Con­necti­cut’s Sen. Chris Mur­phy also would pro­vide $ 5 mil­lion this year, along with ad­di­tional fund­ing in fu­ture years, to ed­u­cate health providers about HI­PAA.

But guid­ance and education won’t be enough to fix a bro­ken law, Tim Mur­phy says. Un­der HI­PAA, fam­i­lies are of­ten treated “like the en­emy,” he says. “What we’re try­ing to al­low is for fam­i­lies to fa­cil­i­tate care. We call it com­pas­sion­ate com­mu­ni­ca­tion.”

His bill would al­low health providers to dis­close a pa­tient’s di­ag­no­sis, treat­ment plan, ap­point­ment sched­ule and med­i­ca­tions to a “re­spon­si­ble care­giver” if the pa­tient has a se­ri­ous men­tal ill­ness and if the in­for­ma­tion is needed to “pro­tect the health, safety or wel­fare of the in­di­vid­ual or gen­eral pub­lic.”

Ac­cord­ing to Tim Mur­phy’s bill, health providers could share in­for­ma­tion if it’s needed for “con­ti­nu­ity of treat­ment;” if fail­ing to dis­close the in­for­ma­tion would “con­trib­ute to a wors­en­ing prog­no­sis or an acute med­i­cal con­di­tion;” or if the pa­tient has a “di­min­ished ca­pac­ity to fully un­der­stand or fol­low a treat­ment plan;” or could be­come “gravely dis­abled in ab­sence of treat­ment.”

Mur­phy says his bill doesn’t al­low providers to share psy­chother­apy notes, which are not in­cluded in med­i­cal records.

Sev­eral prom­i­nent men­tal health groups — in­clud­ing NAMI, the Treat­ment Ad­vo­cacy Cen­ter and the Amer­i­can Psy­chi­atric As­so­ci­a­tion. — have en­dorsed Tim Mur­phy’s bill.

“It just doesn’t make sense to shut fam­i­lies out of the kind of ba­sic in­for­ma­tion that they need to serve as care­givers,” NAMI’s Hon­berg says. “No­body is talk­ing about re­veal­ing in­ti­mate de­tails of the psy­chother­a­peu­tic re­la­tion­ship or sex­ual his­tory or that kind of stuff. We’re talk­ing about di­ag­no­sis, treat­ment and risk fac­tors.”

House Speaker Paul Ryan, R-Wis., has pledged to move Tim Mur­phy’s bill for­ward, cit­ing the need to pre­vent vi­o­lence by men­tally ill peo­ple.

The med­i­cal pro­fes­sion needs to “fun­da­men­tally change the cul­ture,” Pa­trick Kennedy says. “The best way to do that is to change the law.”

But groups such as the Amer­i­can Civil Lib­er­ties Union and the NAACP say the bills in­ter­fere with pa­tients’ civil rights. They say they set a dan­ger­ous prece­dent that could al­low law­mak­ers to be­gin strip­ping pri­vacy pro­tec­tions from peo­ple with other med­i­cal con­di­tions.

As­sur­ances of con­fi­den­tial­ity are crit­i­cal for peo­ple with men­tal ill­ness, per­haps “more than in any other area,” says the Bazelon Cen­ter’s Mathis. The stigma of men­tal ill­ness al­ready pre­vents many peo­ple from seek­ing treat­ment.

“Pri­vacy rights are crit­i­cal for peo­ple with men­tal ill­ness, just as they are for any­one else, to en­sure that they get good treat­ment,” Mathis says. “If peo­ple don’t feel like they have pri­vacy, they aren’t go­ing to be forth­com­ing when they see a med­i­cal pro­fes­sional.”


Chip An­gell lost his son, Chris, to sui­cide. Chris, a highly ranked ten­nis player, had suf­fered from schizophre­nia for about half his life.


Creigh Deeds spends time with son Gus, left, be­tween events as he cam­paigns for gover­nor of Vir­ginia on Sept. 25, 2009. In 2013, Gus bru­tally at­tacked his fa­ther be­fore killing him­self.


Sen. ChrisMur­phy, D-Conn., has in­tro­duced leg­is­la­tion to ed­u­cate health care providers about what HIPAA does and doesn’t per­mit.


James Cor­nick’s son’smed­i­cal records trag­i­cally were not made avail­able to jail of­fi­cials.

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