Crit­i­cal short­age

As tech­nol­ogy im­proves, the trans­plant list gets longer—but there aren’t enough or­gans to go around

Modern Healthcare - - COVER STORY - Jaimy Lee

The me­dia-fu­eled saga of 10year-old cys­tic fi­bro­sis pa­tient Sarah Mur­naghan ended happily last week for her and her fam­ily. But the suc­cess­ful le­gal and pub­lic­ity cam­paign that al­lowed her to leap to the front of the wait­ing list for a life-sav­ing lung trans­plant high­lights the un­der­ly­ing dilemma: De­spite a decade of ef­forts to lift the na­tion’s do­na­tion rate, there still aren’t enough or­gans for the more than 118,000 peo­ple await­ing trans­plants.

Hos­pi­tals re­main the ma­jor source of do­nated or­gans, which are re­trieved af­ter ob­tain­ing fam­ily con­sent from brain-dead trauma vic­tims and other pa­tients with zero prospects for sur­vival. In ad­di­tion, a national cam­paign be­gun a decade ago by HHS and in­volv­ing fed­er­ally des­ig­nated or­gan pro­cure­ment or­ga­ni­za­tions and hos­pi­tals suc­ceeded in rais­ing the num­ber of pre-des­ig­nated or­gan donors, usu­ally iden­ti­fied on a per­son’s driver’s li­cense, to more than 41% of U.S. adults.

The cam­paign dou­bled the num­ber of ac­tual donors and lifted the yield from dy­ing pa­tients from slightly more than 50% to about 76% dur­ing the past 10 years, ac­cord­ing to the United Net­work for Or­gan Shar­ing, a Rich­mond, Va.-based ad­vo­cacy group that has op­er­ated the Or­gan Pro­cure­ment and Trans­plan­ta­tion Net­work since 1986 un­der a fed­eral con­tract with HHS.

But af­ter an ini­tial burst of en­thu­si­asm, progress has stalled at the na­tion’s 800 hos­pi­tals with the largest or­gan-donor po­ten­tial, and some ad­vo­cates say health­care ad­min­is­tra­tors aren’t do­ing enough. Hos­pi­tals “should have a big­ger role in pro­mot­ing or­gan and tis­sue do­na­tion,” said David Bosch, di­rec­tor of com­mu­ni­ca­tions for Gift of Hope, an or­gan pro­cure­ment or­ga­ni­za­tion serv­ing Illi­nois and north­west In­di­ana. “The re­al­ity is we need hos­pi­tals and we need them to iden­tify po­ten­tial donors. We need them to call us in a timely fash­ion. We need them to help us take care of fam­i­lies from the be­gin­ning.”

How­ever, hos­pi­tal of­fi­cials say the real prob­lem lies in the fun­da­men­tal mis­match: There is a grow­ing crowd of peo­ple wait­ing for or­gan trans­plants, and they vastly out­weigh the num­ber of po­ten­tial or­gan donors each year. “It’s a zero-sum game,” said Dr. J. Michael Mil­lis, med­i­cal di­rec­tor of trans­plan­ta­tion ser­vices at Univer­sity of Chicago Medicine. “We don’t have enough or­gans.”

Im­prov­ing med­i­cal tech­nol­ogy is length­en­ing the queue of pa­tients el­i­gi­ble for trans­plant. The in­ven­tion of dial­y­sis ma­chines in the 1970s sub­stan­tially in­creased the num­ber of peo­ple who qual­i­fied for kid­ney trans­plants. To­day, more than 80% of peo­ple on trans­plant wait­ing lists are look­ing for kid­neys.

Im­proved trans­plant tech­niques and the de­vel­op­ment of bet­ter im­mune-sup­pres­sion drugs that pre­vent re­jec­tion have also length­ened lines and im­proved the prospects of pa­tients await­ing liver, lung and heart trans­plants. Roughly 1,650 peo­ple are wait­ing for lung trans­plants, for in­stance, in­clud­ing about 30 chil­dren like Mur­naghan. Be­fore her case, chil­dren were put at the end of the list for re­ceiv­ing do­nated adult lungs.

In the late 1990s, HHS or­dered hos­pi­tals to step up their ef­forts to en­cour­age the fam­i­lies of dy­ing pa­tients to con­sent to be­com­ing or­gan donors. But the move back­fired, ad­vo­cates say, be­cause most hos­pi­tal staff treated the man­date like an­other con­sent form with­out giv­ing soon-to-be griev­ing fam­i­lies the care­ful coun­sel­ing and in­for­ma­tion needed to turn them into will­ing donors.

“Fam­i­lies want to know that the bod­ies won’t be mu­ti­lated; that the or­gans won’t sit on the shelf; that there are re­cip­i­ents al­ready wait­ing,” said Lisa Stocks, ex­ec­u­tive di­rec­tor of LifeShar­ing, the des­ig­nated San Diego-area or­gan pro­cure­ment or­ga­ni­za­tion (OPO), one of 58 across the coun­try. “Fam­i­lies also want to know if their re­li­gion al­lows do­na­tion.”

The up­roar led to the cre­ation in 2003 of the U.S. Or­gan Do­na­tion Break­through Col­lab­o­ra­tive, which iden­ti­fied hos­pi­tals with the largest or­gan-donor po­ten­tial and de­vel­oped a hand-off pro­gram where trained coun­selors work­ing for the OPOs would be called in when­ever a po­ten­tial donor sit­u­a­tion arose in the hos­pi­tal. “The best donor hos­pi­tals in­te­grate or­gan do­na­tion

into end-of-life care and fam­ily care,” said Thomas Mone, the chief ex­ec­u­tive of­fi­cer of OneLe­gacy, the largest OPO in the na­tion, which cov­ers the greater Los An­ge­les area. “It comes from giv­ing fam­i­lies the op­por­tu­nity to have some­thing good come from their loss.”

Mone, who pre­vi­ously served as CEO of San Gabriel (Calif.) Val­ley Med­i­cal Cen­ter, said the No. 1 bar­rier faced by OPOs is lack of a timely re­fer­ral from hos­pi­tals. “It only works well where the OPO has a work­ing re­la­tion­ship with the hos­pi­tal staff to make sure we’re all on the same page … so the fam­ily has the great­est amount of time to come to terms with the is­sue,” he said. “It has to be in the days or hours be­fore a brain death dec­la­ra­tion.”

It can be a del­i­cate dance, how­ever, for hos­pi­tal of­fi­cials try­ing to bal­ance ap­pro­pri­ate end-of-life care and the phys­i­cal re­quire­ments for suc­cess­ful or­gan trans­plan­ta­tion. Brain-dead peo­ple with or­gans slated for re­moval need to be sus­tained dur­ing the last hours of life with ap­pro­pri­ate hydration, nour­ish­ment and blood pres­sure or the or­gan can be ru­ined. Main­tain­ing or­gan func­tion can send a mixed sig­nal to fam­i­lies who just con­sented to or­gan do­na­tion and re­moval of life sup­port.

“There’s ev­ery good rea­son to avoid fu­tile in­ter­ven­tions on some­one who isn’t go­ing to re­cover,” Mone said. “Yet when you do that with a po­ten­tial or­gan donor, you have to … make ev­ery ef­fort to main­tain or­gan func­tion.”

Mone puts the num­ber of hos­pi­tals with solid poli­cies at about the same level as the “yield” rate: a lit­tle over two-thirds of all hos­pi­tals. “You still have a third of hos­pi­tals that are chal­lenged,” he said. “For some, it may not be as fre­quent so they don’t get the ex­pe­ri­ence in how to han­dle fam­i­lies. Some­times, there is an in­di­vid­ual in a key po­si­tion (at the hos­pi­tal) who sim­ply isn’t com­fort­able with it.”

Hos­pi­tals with high donor rates tend to share many of the same best prac­tices, said Teresa Shafer, ex­ec­u­tive vice pres­i­dent and chief op­er­at­ing of­fi­cer for LifeGift, an or­gan pro­cure­ment or­ga­ni­za­tion in Texas. They also usu­ally have se­nior lead­ers who are ac­tive sup­port­ers of or­gan do­na­tion.

Best prac­tices in­clude close col­lab­o­ra­tion be­tween hos­pi­tal clin­i­cians and the OPO staff, in­clud­ing early re­fer­rals; ap­proach­ing fam­i­lies at the right time; and al­low­ing OPO staff to spend enough time with fam­i­lies to en­cour­age do­na­tion. “When your process is poor, you don’t give the fam­ily the best op­por­tu­nity to say yes,” Shafer said.

How­ever, an in­creas­ing num­ber of hos­pi­tal as­so­ci­a­tions and in­di­vid­ual hos­pi­tals, in­clud­ing those that do not have trans­plant cen­ters, have started to pro­mote or­gan do­na­tion to their staff and com­mu­ni­ties. And, like the col­lab­o­ra­tive, some cam­paigns have pro­duced sig­nif­i­cant re­sults.

But it is be­com­ing clear that get­ting more peo­ple to sign up isn’t go­ing to get the job done. Health fac­tors will drive more peo­ple onto wait­ing lines for or­gans, par­tic­u­larly given the ris­ing in­ci­dence of obe­sity-driven di­a­betes and high blood pres­sure, which are the two main causes of end-stage kid­ney fail­ure.

And then there’s the ag­ing of the baby boomer gen­er­a­tion, which is likely to in­crease de­mand for life-ex­tend­ing or­gans just as it has gen­er­ated new de­mand for func­tion-pre­serv­ing knees, hips and car­dio­vas­cu­lar im­plants. Of course, most won’t have the re­sources of Ap­ple co-founder Steve Jobs, who re­ceived a liver trans­plant in Ten­nessee in 2009 by sign­ing up for the trans­plant in the state that his re­search showed had the short­est wait­ing list.

Since trans­plan­ta­tion must oc­cur within hours of the or­gan be­ing re­moved from the donor’s body, most peo­ple must rely on OPOs within their own states to find suit­able donors. They don’t have the op­tion of sign­ing up in a dis­tant state and fly­ing off in a per­sonal jet at a mo­ment’s no­tice.

And those kinds of eth­i­cal dilem­mas are cer­tain to in­crease un­less hos­pi­tals and OPOs come up with a more ef­fec­tive method of gen­er­at­ing donor or­gans from soon-to-die pa­tients. While the Sarah Mur­naghan sit­u­a­tion is some­what unique—lung al­lo­ca­tion poli­cies are the only ones to use age ranges—physi­cians and health­care ex­ec­u­tives say it may lead to more le­gal chal­lenges that could put the med­i­cal com­mu­nity at odds with fam­i­lies.

A law­suit filed on her be­half chal­lenged a fed­eral pol­icy that placed chil­dren younger than 12 years old at the end of the adult wait­ing list rather than by the sever­ity of their con­di­tions. A judge in­ter­vened. The pol­icy was tem­po­rar­ily re­vised. Less than a week later, Sarah re­ceived a lung from an adult donor.

“We are elated this day has come, but we also know our good news is an­other fam­ily’s tragedy,” her mother posted to a Face­book page. “That fam­ily made the de­ci­sion to give Sarah the gift of life—and they are the true heroes to­day.”

More broadly, the case raises a num­ber of eth­i­cal ques­tions about cir­cum­vent­ing the na­tion’s or­gan-al­lo­ca­tion sys­tem and serves as a re­minder of the on­go­ing short­ages of or­gans suit­able for trans­plan­ta­tion de­spite govern­ment and pri­vate-sec­tor ef­forts to boost or­gan do­na­tions. “It’s al­most in­evitable that it will raise ques­tions in the minds of 100,000 peo­ple who are on wait­ing lists for or­gans,” said Robert Veatch, pro­fes­sor of med­i­cal ethics at Ge­orge­town Univer­sity’s Kennedy In­sti­tute of Ethics. “Any­one can muster a set of ar­gu­ments about why their case is spe­cial and deserves pri­or­ity.”

AP PHOTO/MUR­NAGHAN FAM­ILY

Sarah Mur­naghan, 10, who re­ceived a lung trans­plant last week af­ter a win­ning a law­suit chal­leng­ing or­gan re­cip­i­ent age re­stric­tions, in May cel­e­brated the 100th day of her stay at Chil­dren’s Hos­pi­tal of Philadel­phia.

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