Johns Hopkins Magazine -- February 1998
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Patients from all over the globe are increasingly turning to Johns Hopkins Hospital for world-class treatment that extends way beyond the purely medical.

H E A L T H    A N D    M E D I C I N E

Destination: Hopkins
By Sue De Pasquale
Illustration by Scott Roberts

In the lobby of Johns Hopkins Hospital, two-year-old Eduardo Martinez* looks up, up, up at the creamy marble statue of Jesus Christ that towers above him, arms outstretched. Eduardo clutches a bottle of apple juice in one hand; with the other hand he points, his mouth and eyes wide open.

Sister Mary Anne Wood smiles gently at the toddler, then continues on with the story she had been telling his parents and grandmother. "...and as they carried the statue through the streets on back of a large wagon, the people of Baltimore--many of them Germans-- stood watching and saying, `God has finally come to Johns Hopkins Hospital!'"

Maria and Roberto Martinez smile at the story, as does Maria's mother, Teresita. But they don't pause for long because Eduardo takes off running on his sturdy little legs. He's eager to continue exploring. Within seconds, however, Eduardo stops, his body gripped by a croupy-sounding cough that leaves him shaking. As the four adults hurry to catch up with him, his parents exchange a worried glance.

Several weeks ago, doctors in their home city of Monterrey, Mexico, had given a tentative diagnosis for Eduardo's recent health problems: cystic fibrosis. His parents, both financial analysts in their early 30s, were devastated. They knew they needed a definitive second opinion and, after doing some research, discovered that Johns Hopkins Hospital in the United States was the place to get it.

Since that time the couple had been working closely with people in the hospital's Office of International Services to lay out their plans for a weeklong trip to Baltimore. Dalia Padilla-Isicoff, who heads the office's Latin American/Caribbean division, helped the family make its travel plans and line up a place to stay in the nearby Children's Center. She also translated Eduardo's medical records from Spanish to English, and scheduled medical appointments with physician Beryl Rosenstein, widely known for his expertise in diagnosing and treating cystic fibrosis.

The Monday morning after the family arrived in Baltimore, Sister Mary Anne, their interpreter from Hopkins, met them in the cheerful lobby of the Children's Center and then took them for their quick tour of the hospital. While Roberto Martinez speaks almost perfect English, his wife and mother-in-law are less confident in their second language. So Wood will accompany them throughout the day to all of Eduardo's doctor's appointments and lab tests. Afterward, she intends to walk them up the street to the Northeast Market, where they can stock up on fresh fruits and vegetables for the week.

Now, as they sit waiting to see Rosenstein for the first time, Eduardo is oblivious to his parents' anxiety as he stands happily pushing Busy Beads across a wire. His grandmother, a trim, fashionably dressed woman in her late 50s, confides that she's holding out hope that Eduardo's illness is allergy-related; that it's not the life-threatening cystic fibrosis. Her hopes are not completely unwarranted. Just last year, a distraught couple from Puerto Rico came to Hopkins after receiving the diagnosis that all three of their children were suffering from cystic fibrosis. Following a bevy of tests, Hopkins doctors concluded that all three diagnoses were wrong, much to the family's relief.

As the Martinezes rise to make their way into the examining room, Eduardo's grandmother smiles, looks back, and holds up one hand, her fingers crossed for luck.

Tariq Abbara had no idea how he would pay for his son's costly cancer treatment--until the Prince of Qatar stepped in. After 10 months at Hopkins, young Hussam was sent home, cancer-free.
Photo by Jay Van Rensselaer
ON ANY GIVEN DAY, more than a hundred patients and their families from around the world will turn to Hopkins's Office of International Services for help in navigating their way through the unfamiliar waters of the American healthcare system. The office is a thriving enterprise--and one that has seen phenomenal growth since it was established in 1994.

At that time the hospital was getting about 500 international patients a year, almost entirely from South America. Last year Hopkins doctors saw more than 7,000 international patients from 85 countries. To meet their disparate needs, International Services has grown from a staff of four to include more than 80 interpreters, embassy liaisons, media reps, and data analysts-- even a travel agent. Many are natives of the countries or regions they represent. Others, like Wood, have spent years living there and are completely at home with the culture. During the 27 years she did mission work in Bolivia, Wood fell in love with the people. "They are so warm and loving," she says.

In addition to Wood and another interpreter who is a nun, the International Services staff includes a good number of people who spent the first part of their careers doing other things in other lands. There are retired doctors and nurses, foreign language teachers, businesspeople. Lesley Macherelli, who heads up the Italian division, gave up a well-paying job with a Fortune 100 firm to come to Hopkins to work with Italian patients and their families. "I took a dramatic drop in pay and now have hours that are just absurd," she says laughing, "but I'm happier. What this gives me is the opportunity to really feel good about what I do."

For Hopkins, international patients represent a golden market because (with very few exceptions) they pay 100 percent of what they're charged, usually before they've even been discharged. That's especially welcome in the current era of managed care, when American insurance companies are cutting back on what--and how much--they'll pay for. On average, a domestic patient ends up paying just 68.8 percent of total charges, over an average 78 days.

How can international patients afford full fare? Some families, like the Martinezes, are covered in good part by medical insurance; in other cases home governments agree to sponsor patients to make possible treatment unavailable in their own country. Then there's a sizable proportion of international patients, roughly a third, who are affluent enough to pay their expenses out of pocket. Many come from the oil-rich countries of the Middle East.

Take the case of Hussam Abbara, a 10-year-old from the Arabic nation of Qatar, whose cancer had spread into his bones and whose only hope was a stem cell transplant. His father, Tariq, a university professor with six other children, had no idea how he would pay for the costly treatment at Johns Hopkins--until one of his former students, the Prince of Qatar, stepped in to help. Sheikh Mishal Bin Hamad Al-thani sent his favorite teacher two plane tickets and put down a deposit for treatment at Hopkins Hospital: for $2 million. Ten months later, Hussam was cancer-free and the grateful father and son were ready to return home to their anxiously waiting family.

To compete for the most affluent of the affluent, Hopkins has developed an upscale wing of the hospital known as the Marburg Pavilion. Step off the elevator onto the third-floor Marburg and you're immediately struck by the quiet. There is no hustle and bustle in the hallways, no blare of an intercom; instead nurses wear sensors, which patients activate to summon them. Off the central hallways, which gleam with inlaid mahogany, lie 15 hospital rooms meticulously decorated with Chippendale reproduction furniture and brocade drapes. Nearly all the rooms are large enough to include a separate sitting area, where family and other visitors can gather around a table to dine, or to relax and watch TV (which is tastefully hidden inside a mahogany entertainment center). The effect is more like an upscale hotel than a hospital room.

About 20 percent of those who pay the extra $150 to $650 more a night to stay at the Marburg are from outside the United States, and it's not unusual for many of these patients to want family and friends close by. Just last week, for instance, a Saudi Arabian princess had reserved more than two-thirds of the rooms on the wing for her entourage of 40 friends and attendants. Chef David Bamford and his staff of three chefs whipped up Middle Eastern favorites like baba ghannooj (grilled eggplant dip) and shakreeyeh (braised lamb), stocked up on mangoes and papayas, and served the group their meals each evening in a large guest room, banquet style.

Since the Marburg opened in 1996, Bamford and his chefs have taken great pains to expand their culinary repertoire to meet the tastes of their international patients. Early on, they made a trip to the Saudi Arabian embassy in Washington, D.C., where the Saudi ambassador and members of the royal family shared with them recipes and cooking techniques. Since then, Marburg patients from all over the world have passed along their own recipes, and Bamford has started an ever-expanding library of international cookbooks.

"Through experimentation we've learned a lot about what we can and cannot do," he says. They've learned, for instance, that Saudi Arabian patients prefer to have their chicken soaked in water before cooking, to remove the flavor of blood. That patients from India particularly enjoy dishes made with the hard-to-find mooung bean. That it's important to keep on hand a healthy supply of kebsa spices--a combination of cumin, cinnamon, and allspice--for seasoning rice and chicken.

Five-star quality food, available around the clock, is not the only high-amenities service available to Marburg patients. Wealthy patients also request large-screen TVs linked to cable stations from their home countries, and personal assistants to manage their daily schedules and escort them around Baltimore. These are requests that those in International Services are only too happy to meet--because if they don't, wealthy international patients (who last year made $3 million in donations to the hospital) will all too easily go somewhere else.

Across the country, competition for international patients among hospitals is fierce and getting fiercer by the day. Hospitals from New York to Chicago are adding wings of luxury suites, building Muslim prayer mosques, and butchering live goats for dinner, all in an attempt to attract affluent foreign patients.

No one knows this better than John Hutchins, the man who was brought in four years ago to get Hopkins's International Services up and running. When Hutchins got into the business back in 1984, there were only a handful of players in the international patient market. By the end of 1997, he estimates there were close to 60 hospitals involved. "I see visible evidence that the competition is out there and ready to do serious business," he says solemnly.

Critics of luxury hospital accommodations argue that they only serve to underscore the two-tiered system of American healthcare, sending the message that it's possible to buy your way out of unpleasant surroundings.

Hutchins is pragmatic when responding to such criticism. "The bed may look better on Marburg, but the quality of medical care isn't," he says. What's more, the income brought in by wealthy patients helps the hospital cover the cost of research and treatment for indigent patients. He also contends that providing luxury hospital accommodations is no different than giving car buyers a choice between Ford Pintos and Lincoln Town Cars.

"If you're running United Airlines and part of your passengers want a first-class section, you provide it, because if you don't do that, they'll go somewhere else," Hutchins says. "If someone wants a first-class seat, they usually don't travel on Southwest Airlines."

When Hutchins looks at the future for International Services at Hopkins, he can't afford to be sanguine. Last year his office netted $28 million, about 2 percent of the hospital's total revenue. Hospital officials would like to see that percentage continue to increase. "I'm an attack dog," Hutchins says. "I need to be. This is not an easy business. This isn't the kind of business you do between 5 and 6 at night."

Hutchins's strategies for growth are varied. For starters, he's looking to align Hopkins with health insurance companies in regions throughout the world. Hopkins has already signed a deal with the Brazilian insurance company Omint, which offers Brazilian patients the option of pursuing treatment outside the country, and only at Hopkins Hospital. "Business has really taken off," he says.

Beyond that, he's experimenting with a variety of other approaches. He's looking into having representatives who live abroad and can devote their time to drumming up new business. And, following the lead of places like Stanford University Hospital and the Mayo Clinic, he's working to establish a Hopkins diagnostic clinic somewhere outside the United States. He won't say much about where the Hopkins clinic will be based ("We're shaking that down right now"); what he will say is that it will be staffed primarily by local physicians (including alumni), with Hopkins doctors participating on a visiting basis and electronically, via telemedicine.

In fact, recent breakthroughs in electronic communications increasingly will make it possible for Hopkins doctors to treat international patients without ever setting foot on American soil. Diagnosing rare brain tumors can be particularly tricky, for instance, for physicians without much experience. Hutchins says Hopkins is sampling a program that would allow Hopkins radiologists and pathologists to read an international patient's MRI scans and lab reports--whether the patient lived in Ireland or Istanbul--and make such tricky diagnoses remotely.

This morning, Rosenstein must tell the Martinez family the news that they didn't want to hear.
In a small examining room on the pediatrics wing of the Outpatient Center, the Martinez family sits talking with Rosenstein. Two days have passed since Maria and Roberto had their first consultation with the cystic fibrosis specialist. During that time their son had blood drawn and a test done to measure the salt content of his sweat.

This morning, Rosenstein tells the family the news they didn't want to hear: Eduardo's elevated sweat salt concentration confirms that he does indeed have cystic fibrosis. The severity won't be known for two more weeks, when results from his blood and fecal tests come back. If these tests show that his pancreas is not involved--that he has a relatively "light" case--then there's a good chance he'll be able to live normally into his 40s or 50s. If his pancreas is involved, his life expectancy will be a decade or more shorter.

His parents, though not surprised, are clearly devastated by the definity of the diagnosis and all its ramifications. Maria's eyes are red from crying and Roberto leans against a windowsill, his mouth set in a grim line. A worriedlooking Teresita busies herself by trying to keep her grandson amused with a book about Bambi. Rosenstein is gentle-voiced and thorough as he sits with the family for close to two hours, answering all their questions. Interpreter Victoriana O'Keefe, who has taken over the case for Wood, breaks in occasionally to translate an English medical phrase, or explain something that seems confusing.

Because cystic fibrosis is genetically acquired, Rosenstein must tell the young couple that they have a 25 percent risk of passing the disease along to any subsequent children they might have, something that could be determined through prenatal testing. He also mentions the importance of telling the rest of their two families about the increased risk. (Both Maria and Roberto have multiple siblings of childbearing age.)

Normally, a family living locally would have time to digest the news over the course of several days or weeks as they returned for follow-up visits. But because the Martinezes must fly back to Monterrey in just a few days, every moment at Hopkins is precious. Once Rosenstein steps out of the room to grab a quick lunch, they are joined by a nutrition specialist. She explains that Eduardo is unable to absorb all the fat from food that he needs, so that he must take in one-and-a-half to two times the normal amount for children his age. Add lots of butter to his vegetables, she advises, and substitute milk for juice whenever possible. A dietitian will follow-up with recipe ideas.

Competition for international patients is getting fiercer by the day, says Hopkins's director of International Services, John Hutchins.
The nutritionist is hardly gone before a physical therapist steps in. To help dislodge the sticky mucous that builds up in Eduardo's lungs, Maria and Roberto must clap their little boy's chest and back for 20 minutes each morning and before bedtime. She demonstrates the procedure on Eduardo as she talks, then has both parents do it. She also encourages the couple to make sure Eduardo gets lots of lung-building exercise; running and swimming are particularly good choices, she tells them.

Rosenstein has already gone over the list of medications Eduardo must take once he's back home. There is a cystic fibrosis center in Monterrey; at this point the Martinezes aren't sure whether they'll take Eduardo there for his medical appointments every three to six months, or whether they'll go to a hospital in Houston, a short plane ride away. Whichever option they choose, Rosenstein promises to be in close contact with Eduardo's physicians via e-mail and phone.

For the family, perhaps the most important communication with Rosenstein will come in two weeks' time, once they're back home. That's the call they'll get to find out the results of Eduardo's blood and fecal tests. The call that will tell them more than they may really want to know about their little boy's future.

BY THE TIME THE LONG AFTERNOON draws to a close, all four Martinezes look spent as they make the two-block walk back to their rooms in the Children's House. Roberto holds tightly to his son, who has fallen asleep on his shoulder. O'Keefe appears drained as well. Though the interpreter has known the family for only a day, she has already come to adore Eduardo, with his rounded cheeks, flashing brown eyes, and determined nature. For the Spanish-born O'Keefe, guiding Eduardo's parents and grandmother through the intense and painful events of the afternoon has not been easy. Yet it's clear from the embrace they all share upon parting that her quiet presence has been a comfort to them.

The Martinez family's stay at Hopkins Hospital, at just under a week, is relatively short. While the hospital gets its share of routine visits (like the Japanese businessmen working in the United States who pop in for one- and two-day physicals), other international patients who travel to Hopkins are very ill and may require months of complicated follow-up surgery. During those weeks and months, interpreters can become very close to the families they serve.

For sick patients in an unfamiliar land, International Services liaisons can be a comfort. Many act as interpreters, accompanying patients through rounds of medical appointments and tests.
Photo by Jay Van Rensselaer
Says Leslie Macherelli, who last year handled about 100 patients in the Italian division, "Once they've come to depend upon you as their contact, you become their family, their link to the institution in every real way. They want you there with them." She tells of one little boy and his mother who faced the prospect of spending a long weekend alone in Baltimore, in between seeing specialists. "I was at a loss as to what they would do, so I brought them home with me [to Washington D.C.] and they went to soccer games and Brownie fairs with my own kids."

Like other patient liaisons in International Services, Macherelli is on call 24 hours a day. If a patient is rushed to the emergency room in the middle of the night, or finds himself stranded at the airport on a weekend afternoon, someone must be there to translate and iron out problems. Macherelli says it's not unusual to be awakened by a Sunday morning phone call at 6:30 a.m., as she was recently when a cousin of one of her patients called from Italy to check on the patient's progress. "I knew I had passed into family status when that call came in," Macherelli laughs.

Sometimes the most difficult interactions come long distance, when, after weeks of communicating back and forth, Macherelli and others must tell a patient that Hopkins physicians have reviewed the case, and there's nothing they can do. Don't bother making the trip. "So many times I find myself on the phone with a patient in tears. They say, `You've got to help me, you're our last chance!' I get so depressed when we can't help these people," she says.

Beyond questions of language translation, interpreters can also find themselves negotiating delicate cultural differences. As head of the Arabic/Middle East division and its 17 translators, Ruthy Khawaja Feltrin routinely offers cultural sensitivity training--both formally and informally--to nurses, physicians, and other Hopkins medical personnel. She explains to them that Arabic and Middle Eastern patients, who comprise more than half of all the international patients Hopkins sees, have three central values: They believe strongly in God, they consider one's honor and dignity the most important aspects of character, and they see the family--rather than the individual--as the basic societal unit. "If you can understand those three, it can explain a lot of behaviors," Feltrin says.

For instance, when faced with a decision about whether to have a particular procedure done, patients will tell physicians they must first discuss the matter with their family. Likewise, it's not unusual to see half a dozen family members--grandmothers, aunts, uncles, cousins, sisters--troop into the examining room for an exam. "Doctors might say, `This is irritating. Tell all these people to wait outside,'" says Feltrin. "But for the family, this is their duty. If they don't stick with the patient, they're not doing their job."

Feltrin has found that the most sensitive situations arise when a patient is terminally ill. Arabic patients believe their life is in the hands of God, who can intervene at any minute with a miracle; thus, they resent it when doctors suggest giving up on treatment. What's more, most Arabic families want to shield their loved ones from the prognosis that they are terminal. "If my mother were dying, God forbid, I wouldn't tell her. None of us would tell her," says the Jordanian-born Feltrin. "It's our duty as her family to protect her from that horrible information."

This can put U.S. doctors, who are required by law to keep patients informed, in a tough ethical bind. Feltrin says several such cases have gone before the hospital's ethics committee. "When doctors insist on telling, it's all about how you do it. You don't walk in and say, `You've got six months to live.' Instead you might say, `As doctors we've done everything we can to treat you; the rest is up to God.' To say, `You're dying,' just doesn't sit well."

"We stay in contact with our patients," says Padilla-Isicoff. "And they stay in contact with us."
THE DAY BEFORE THE MARTINEZ family left Baltimore, Dalia Padilla-Isicoff, who had been keeping tabs on the family since its arrival, ushered Maria off to a quiet corner of the Outpatient Center. There, away from the rest of her family, the young mother unburdened herself, talking and crying for close to two hours. "Afterward, she seemed much more in control," says Padilla-Isicoff.

Two weeks later the results of Eduardo's genetic tests showed that his pancreas is involved; he does not have a "light" case of cystic fibrosis. The medications he will require will cost upward of $300 a month. Because the Martinezes' insurance plan does not cover genetic illness, they will have to find the money themselves--and they have no idea how they'll do it.

While the family is now back at home in Monterrey, Mexico, their dealings with the staff at Hopkins Hospital are far from over. Once the bad news had sunk in, the couple called Padilla-Isicoff, who spent the better part of a Sunday afternoon trying to comfort them over the phone. She also promised to do everything she could to find a funding source for Eduardo's medication. Since the medication Eduardo needs is not available in Mexico, she has offered to obtain it for them in the United States and have it shipped; she's even sent a generous supply of free samples provided by pharmaceutical companies--enough to hold Eduardo over for several months.

For Padilla-Isicoff, this kind of ongoing relationship is not unusual. "We stay in contact with our patients," she says, "and they stay in contact with us." Over the December holidays, she and her staff were deluged with letters and cards from former patients. "The theme of most of their letters," she says, "is how grateful they are to have a place in the United States where they can come and feel at home and well taken care of."

* Names have been changed to protect the family's privacy.
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Sue De Pasquale is the editor of Johns Hopkins Magazine.