Daugh­ter, stu­dent, care­giver, nurse

Help­ing health­care’s hid­den la­bor force

Modern Healthcare - - NEWS - By El­iz­a­beth Whit­man

Jas­mine Pearl­man was close to earn­ing her as­so­ci­ate’s de­gree in 2004 when her mother, Ce­leste, de­vel­oped non-Hodgkins lym­phoma. The di­ag­no­sis dra­mat­i­cally changed the 21-year-old Jas­mine’s life.

In be­tween classes, she es­corted her mother to the on­col­o­gist, to ra­di­a­tion and chemo­ther­apy treat­ments, and to check­ups with her pri­mary-care physi­cian. She over­saw her mother’s 15-pill daily reg­i­men and as­sumed house­hold re­spon­si­bil­i­ties such as pay­ing bills, gro­cery shop­ping and clean­ing the apart­ment they shared in the Bronx in New York City. Her grades suf­fered, and she strug­gled with de­pres­sion. Some­how, she man­aged to grad­u­ate.

In 2005, Ce­leste’s can­cer went into re­mis­sion, but her health con­tin­ued to de­cline. “She was just worn out,” the younger Pearl­man said. “She needed me to take over ev­ery­thing.” And Pearl­man was happy to do it, even as oth­ers urged her to live a more in­de­pen­dent life.

To­day, the younger Pearl­man re­mains the duo’s bread­win­ner. She con­tin­ues to man­age Ce­leste’s med­i­cal af­fairs, which in 2014 in­volved five pro­ce­dures, in­clud­ing a par­tial am­pu­ta­tion re­lated to a chronic con­di­tion.

In ad­di­tion to wor­ry­ing about mix­ing up pills and dosages for her mother’s daily med­i­ca­tions, now down to eight, she learned largely on her own how to clean post-sur­gi­cal wounds, pre­pare her mother’s foot for a par­tial am­pu­ta­tion, and in­ject her mother with blood thin­ners—in

“She was just worn out. She needed me to take over ev­ery­thing.” Jas­mine Pearl­man, left, with her mother Ce­leste

her stom­ach.

“When I did her shot, she screamed,” Pearl­man re­called. “I’m a novice to these types of things.”

Pearl­man’s ex­pe­ri­ence, not un­usual for some­one car­ing for a fam­ily mem­ber, is the kind that is bol­ster­ing grow­ing calls in the U.S. for providers and pol­i­cy­mak­ers to for­mally rec­og­nize home-based care­givers’ vi­tal role in health­care and to in­te­grate them into care-co­or­di­na­tion pro­cesses. Re­searchers, pol­i­cy­mak­ers and health­care providers are slowly rec­og­niz­ing that with train­ing and ed­u­ca­tion, these care­givers will be bet­ter equipped to han­dle the in­creas­ingly com­plex med­i­cal tasks be­ing asked of them, less likely to make mis­takes or cause or suf­fer in­juries, and more likely to de­tect po­ten­tial prob­lems, such as the early signs of an in­fec­tion.

For any­one pay­ing for health­care, fam­ily care­givers have fi­nan­cial ap­peal, too. Home is a far less ex­pen­sive place for a pa­tient to re­cu­per­ate than a nurs­ing home or other long-term-care in­sti­tu­tion.

Ini­tia­tives are un­der­way to pro­vide care­givers with train­ing and re­sources. But care­givers are far from be­ing fully in­te­grated into care pro­cesses. Ex­perts say this over­sight ex­acts a heavy and wors­en­ing toll on care­givers and hin­ders ef­forts to keep pa­tients out of the hos­pi­tal or nurs­ing home.

“We’re miss­ing an op­por­tu­nity to im­prove care,” said Jen­nifer Wolff, an as­so­ci­ate pro­fes­sor at Johns Hop­kins Univer­sity in Bal­ti­more who stud­ies fam­ily care­giv­ing. “The fam­ily mem­ber is of­ten the per­son who’s re­spon­si­ble for help­ing the most com­plex, most costly pa­tients af­ter they leave the four walls of the hos­pi­tal.”

Pearl­man even­tu­ally built her very ca­reer around her decade­long role as care­giver for her mother. She went on to earn a mas­ter’s de­gree in pub­lic ad­min­is­tra­tion in 2008 and started Care­giv­ing & You, a com­mu­nity-based or­ga­ni­za­tion. The group of­fers fi­nan­cial and ma­te­rial as­sis­tance, sup­port groups, and prac­ti­cal ad­vice. It has also pro­duced

TV, ra­dio and in­ter­net pro­gram­ming geared to care­givers.

The sheer scope of the is­sue, how­ever, leaves groups such as Care­giv­ing & You con­fronting an ocean of need. There were an es­ti­mated 43.5 mil­lion un­paid care­givers in the U.S. in 2011, over 40% of whom took care of a fam­ily mem­ber 65 or older, ac­cord­ing to a re­port pub­lished this year by the Na­tional Acad­e­mies Press. Roughly 8.5 mil­lion of them looked af­ter “high­need” older adults, who have at least three chronic diseases and a lim­ited abil­ity to han­dle daily tasks.

Tra­di­tion­ally, care­giv­ing in­volved help­ing a per­son with ba­sic daily ac­tiv­i­ties. But the work has grown more de­mand­ing. Ac­cord­ing to the AARP, more than three­quar­ters of care­givers help loved ones to fill and man­age med­i­ca­tions that of­ten re­quire jug­gling vary­ing dosages for pills that can ap­pear iden­ti­cal. They per­form rou­tine nurs­ing work such as drain­ing catheters. Care­givers also help loved ones nav­i­gate the health­care sys­tem.

Another fac­tor push­ing more care into home set­tings is the on­go­ing shift to re­ward health­care providers for the qual­ity of care, in­clud­ing pa­tient sat­is­fac­tion and out­comes, and not its quan­tity. Providers are in­creas­ingly steer­ing pa­tients to­ward set­tings where they will heal from surg­eries and treat­ments in com­fort, with as lit­tle risk as pos­si­ble—and for the least amount of money.

Of­ten, in­stead of hos­pi­tals or post-acute care in­sti­tu­tions, that place is home. And some­one, typ­i­cally a fam­ily mem­ber who is un­paid and usu­ally fe­male, has to be there to help.

For these in­di­vid­u­als, care­giv­ing can re­quire sub­stan­tial fi­nan­cial sac­ri­fice. Con­ser­va­tive es­ti­mates by the in­surer MetLife sug­gest a fe­male care­giver loses $324,044 in wages and So­cial Se­cu­rity ben­e­fits while the typ­i­cal male care­giver loses $283,716 over the course of a work­ing life.

The eco­nomic value of care­giv­ing, which ranges from short-term post-acute as­sis­tance to long-term care, was es­ti­mated at $470 bil­lion in 2013. In 2011, the Con­gres­sional Bud­get Of­fice es­ti­mated, fam­ily mem­bers pro­vided 55% of the value of long-term el­derly care ser­vices, or $234 bil­lion a year.

De­spite the value of their work, these un­paid care­givers of­ten lack the skills and sup­port needed to prop­erly care for their loved ones. And as the med­i­cal com­plex­ity of pa­tient cases es­ca­lates, so do con­cerns about safety.

If fam­ily care­givers are trained, sup­ported and ed­u­cated, ad­vo­cates say, dan­ger­ous mis­takes such as giv­ing the wrong medicine or over­look­ing a sign of in­fec­tion could be pre­vented.

The Na­tional Acad­e­mies re­port, is­sued prior to the Novem­ber elec­tions, called for the next ad­min­is­tra­tion to “de­velop and ex­e­cute a Na­tional Fam­ily Care­giver Strat­egy that, ad­min­is­tra­tively or through new fed­eral leg­is­la­tion, ex­plic­itly and sys­tem­at­i­cally ad­dresses and sup­ports the es­sen­tial role of fam­ily care­givers to older adults.” It pointed out that by 2030, 72.8 mil­lion Amer­i­cans will be 65 or older.

This de­mo­graphic shift is one the health­care sys­tem and long-term ser­vices are not pre­pared for—and care­givers tend to agree. “We’re not treated as part of the team,” said Suzanne Mintz, pres­i­dent and co-founder of the Na­tional Fam­ily Care­givers As­so­ci­a­tion. She has cared for her hus­band, who is wheel­chair-bound, since his di­ag­no­sis of mul­ti­ple scle­ro­sis in 1974.

“If you think about it, who is spend­ing the most time with the pa­tient? It’s the per­son who’s car­ing for them, not their mul­ti­ple doc­tors,” Mintz said. “What we see on a reg­u­lar ba­sis is very im­por­tant to be able to share.”

Care­givers ex­pressed con­cerns that with­out train­ing, they would ac­ci­den­tally mix up med­i­ca­tions, hurt them­selves try­ing to lift a pa­tient, or miss crit­i­cal signs that some­thing was wrong. “Un­trained fam­ily mem­bers are au­to­mat­i­cally as­sumed to be able to do this kind of work,” said Carol Levine, di­rec­tor of the Fam­i­lies and Health Care Pro­ject for the not-for-profit United Hos­pi­tal Fund in New York City.

In­te­grat­ing them into health­care sys­tem pro­cesses may hold the key to over­com­ing these prob­lems. Re­search has shown that when care­givers are in­cluded in hos­pi­tal dis­charge process, lengths of stay are short­ened and read­mis­sions de­crease, ac­cord­ing to the Na­tional Acad­e­mies re­port.

Although on­line ad­vice for care­givers abounds, this wealth of in­for­ma­tion may be ex­ces­sive, ex­perts say, be­cause not all of it is use­ful or rel­e­vant. It is hard for care­givers to gauge the value be­fore click­ing.

The United Hos­pi­tal Fund has Next Step in Care, a web­site with guides, check­lists and videos—in four lan­guages—cov­er­ing care tran­si­tions. The AARP re­cently pi­loted an in­ter­ac­tive web­site called CareCon­nec­tion that pro­vides care­givers with de­tailed an­swers to com­mon ques­tions.

“They search the web and get lost. The so­lu­tions are not tai­lored well, or they’re not tak­ing care­giver needs into ac­count.” San­jay Khu­rana, vice pres­i­dent of care­giv­ing prod­ucts and ser­vices at AARP

“They search the web and get lost,” said San­jay Khu­rana, vice pres­i­dent of care­giv­ing prod­ucts and ser­vices at AARP. “The so­lu­tions are not tai­lored well, or they’re not tak­ing care­giver needs into ac­count.”

Care­givers are al­ready vi­tal to ef­forts to im­prove qual­ity and pa­tient safety, ad­vo­cates say. But if they are for­mally rec­og­nized as such and in­te­grated into the care-co­or­di­na­tion process, they could be even more ef­fec­tive. Ef­forts to achieve this are un­der­way in a va­ri­ety of ar­eas.

Some health­care sys­tems have ex­per­i­mented with in­te­grat­ing fam­ily care­givers into for­mal care pro­cesses. Mean­while, 35 states have en­acted ver­sions of the AARP­drafted Care­giver Ad­vise, Record, En­able (CARE) Act, most re­cently Ohio. Both cham­bers of its Re­pub­li­can-con­trolled Leg­is­la­ture voted unan­i­mously to pass a ver­sion of the bill on Dec. 12.

Un­der the CARE Act, hos­pi­tals must record the care­giver’s name on a pa­tient’s med­i­cal record if the pa­tient re­quests, in­form care­givers when that pa­tient is dis­charged, and in­struct care­givers in rel­e­vant med­i­cal tasks.

One av­enue for in­te­grat­ing care­givers into the for­mal health­care sys­tem is through elec­tronic health records. In 2013, Geisinger Health Sys­tem, an in­te­grated sys­tem in cen­tral Penn­syl­va­nia, be­gan look­ing into grant­ing care- givers shared ac­cess to physi­cians’ visit notes via the on­line por­tal OpenNotes.

Wolff, of Johns Hop­kins, stud­ied the ef­fec­tive­ness of this ap­proach and found that care­givers re­ported bet­ter com­mu­ni­ca­tion with providers af­ter us­ing it.

But even as ex­perts laud these ef­forts, they em­pha­size just how much fur­ther sup­port­ing and in­te­grat­ing care­givers have to go. “Peo­ple want to get paid,” Levine said. Ac­cord­ing to her, that is­sue is a pri­or­ity for care­givers.

A hand­ful of pol­icy pro­pos­als—paid leave, So­cial Se­cu­rity credit and tax cred­its for care­giv­ing— would mit­i­gate the fi­nan­cial strain of care­giv­ing, but only mod­estly, Levine said. At the fed­eral level, these ideas re­main pro­pos­als, not poli­cies. (In some cases, fam­ily care­givers can seek care­giv­ing-re­lated tax cred­its by claim­ing rel­a­tives as de­pen­dents or by claim­ing med­i­cal ex­penses.)

In some states, Med­i­caid may pay fam­ily mem­bers to care for ben­e­fi­cia­ries. Cash & Coun­sel­ing, a grant pro­gram in 15 states, gives peo­ple with se­vere dis­abil­i­ties a bud­get to hire per­sonal-care work­ers. Medi­care does not pay for long-term, com­mu­nity-based care, and few home­bound el­derly have pri­vate long-term-care in­sur­ance poli­cies, which vary in what they’ll cover.

“Poli­cies and prac­tices have to be­come much more open about, ‘Yes, we’re de­pend­ing on you, so we owe you some­thing,’ ” Levine said.

Few get train­ing Many care­givers per­form nurs­ing or med­i­cal tasks with­out any train­ing

Es­ti­mated eco­nomic value of for­mal and in­for­mal long-term ser­vices and sup­ports for el­derly peo­ple in the U.S., 2011

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