CAMBRIDGE — They help her into a sequined dress, tie a good luck balloon to her bed, and share a cake bidding “Bon Voyage.”
The medical staff at Spaulding Hospital Cambridge has healed the wounds of Zilania Joacin, fed and clothed her, helped her in and out of bed nearly every day since she arrived with little more than a hospital johnny.
Now, some in tears, they gather in the cramped room the wizened woman shares with another patient. They have come to say goodbye.
Joacin arrived in Boston four years ago, battered by the earthquake that ravaged Haiti in 2010. For nearly all that time, home has been the second floor of the rehabilitation hospital. The 71-year-old has been here longer than any other patient, and, by all accounts, she is the last evacuee of the quake remaining in a Boston-area hospital.
The doctors and nurses have done their best to salve the pain of a broken hip and several strokes. Joacin is stable now and although she needs round-the-clock care, it can be provided by a home health aide or at a residential facility. Administrators say it no longer makes sense for her to remain in a high-demand bed that costs about $1,000 a day, an expense absorbed by Spaulding.
It’s time for her to go, they insist, especially now that a hospital in Haiti is ready to provide her free care. She has no way to pay for the steep cost of care in the United States, no access to government health plans or private insurance, no well-off relatives.
Three days before Joacin is scheduled to leave, the staff has come together during a shift change. They shower her with hugs, pictures, and presents: toiletries and medication, shoes and clothing, and two new suitcases, necessities that may not be easy to come by back home.
Joacin, illiterate and suffering from dementia, does not understand the purpose of the party, she says later.
Neither she nor her relatives — who deeply appreciate the top-flight care she has received — are ready for her to leave, especially to go back to Haiti.
“If I go there, I’m going to die,” she says a few days after the party, seated in her wheelchair. “I’ll die alone.”
Her husband of 50 years, Reserve Coffy, who has been taken in by a Haitian family in Cambridge and spends several hours each day visiting his wife, wants her to stay at Spaulding as long as she can. He fears what will become of their lives if they return home.
“If we go to Haiti, we’ll die and die,” says Coffy, 72, sitting beside his wife. “If we stay here, we’ll live and live.”
* * * * *
Jean Paul Coffy was living in Chicago with his wife and two children when he learned about the earthquake. He tried frantically to reach his parents and other relatives, but there was no getting through.
So the musician pulled together $1,500 from his savings and a donation from a friend, gathered water purification tablets and cereal bars, and flew to Haiti.
There, he grasped a candle as he made his way into the remains of his family’s concrete-and-tin home in Port-au-Prince.
It was six days after the catastrophe, which left 100,000 to 300,000 people dead. Major aftershocks still rattled the country.
He found his parents huddled in an intact back room, surviving on nothing more than crackers. His mother, a diabetic who had previously undergone a hip operation, had a broken leg, which had turned dangerously swollen and infected. His father had minor injuries. A brother and a sister were dead. Another brother had disappeared.
His mother needed help, desperately.
The son hired jitneys, buses, and taxis to take his parents on perilous journeys over rutted roads. First, they went to the Dominican Republic, and then back to Haiti
Their odyssey ultimately took them to a hospital in Cange, Haiti, run by Partners In Health, a Boston-based charity that provides free health services to impoverished people around the world. Doctors there assessed Joacin’s condition and determined she was unlikely to survive if she did not get to a hospital in the United States.
That was when her luck changed. At the same time Joacin was in Cange, so were some of the most powerful people from Boston’s medical firmament: Dr. Elizabeth Nabel, president of Brigham and Women’s Hospital, and Dr. Gary Gottlieb, president of Partners HealthCare, which owns Brigham and Women’s and Spaulding.
They promised to provide Joacin free care in Massachusetts.
Within a few days, she became one of fewer than 100 earthquake victims flown to the United States with the help of Partners In Health, which arranged for her medical visa, a helicopter ride from the hospital to the airport in Port-au-Prince, and a special medical evacuation plane to Boston.
When the couple arrived at the Brigham in late March 2010, Joacin underwent a battery of care that included an expensive hip replacement. Within a month, medical officials transferred her to Spaulding in Cambridge.
“This has been the hardest experience of my life,” Jean Paul Coffy told a physician who accompanied the family to Boston, according to a Partners In Health blog that the charity uses to raise money. “But now I feel like I won the lottery.”
* * * * *
After several months, Joacin’s infection heals, and her other ailments are brought under control. The staff at Spaulding begins searching for discharge options, maintaining that Joacin no longer belongs in a hospital.
It is costing the hospital a lot of money to provide her care. By the beginning of this year, administrators say, they have spent nearly $2 million on her treatment.
“The question is where our responsibility ends,” says Joanne Fucile, vice president of operations and director of nursing for Spaulding Hospital Cambridge, who notes the average length of stay for a patient is less than a month. “I don’t know the answer to that.”
It is a question Joacin’s son has wrestled with for years. “This is the first time in my life I’m begging someone for help, and it’s humiliating,” he says, in a telephone interview from Chicago.
Joacin does not qualify for Medicaid because she is not a citizen or a legal resident. She remains here on a humanitarian basis, a status that must be renewed every year.
Spaulding staff members, as well as Joacin’s family, check to see if an institution closer to her son in Chicago might provide free care
Options narrowing, Spaulding proposes buying medical equipment for the family and flying Joacin to Chicago. Her son says he wishes he could care for his mother, but she cannot stand on her own and needs help 24 hours a day.
Jean Paul Coffy and his wife run a day-care center out of their home, which is not designed for someone in a wheelchair. Their combined income, they say, is less than $40,000 a year, not nearly enough to pay for the aide and the changes to their home that Joacin’s care requires.
“We really don’t have the resources,” the son says. “I wish I could just put her on my back and take her home. I should be able to do that as a man. I’m shameful that I can’t.”
In recent months, Spaulding administrators begin pushing more aggressively for Joacin to leave the hospital. “Patient and family informed that we would be looking for resolution by the end of September,” says an entry from last September on a timeline of Joacin’s care, which hospital officials provide to the Globe.
In another entry, hospital staff say: “One concern is that the visas are due for renewal in May, and given the improvement in infrastructure in Haiti and the patient’s clinical stability, there is no medical reason to renew the visa.”
So hospital officials begin working with Partners In Health to have the charity care for her at its hospital in Cange, in a remote village in Haiti’s Central Plateau.
Officials at Partners In Health say they receive consent from Joacin, her husband, and their son to fly the woman to Haiti and care for her there.
Spaulding offers a wheelchair and at least five days of medication and syringes; their staff offers to donate other necessities. Partners In Health finds a physician to fly with Joacin on an early flight Jan. 20. They take care of paperwork, clear her departure with customs officials, and arrange for her to be received in Cange.
“I spoke with the son, the patient, and husband, and they all seemed comfortable with the idea,” Dr. Joia Mukherjee, chief medical officer of Partners In Health, says afterward. “We talked in detail about what kind of care we could provide in Haiti.”
* * * * *
Advocates for Haitian immigrants say they had no idea an earthquake victim has remained at a local hospital for so long.
Most earthquake survivors requiring long-term care were absorbed by friends and family, while others, who completed their treatment, have returned to a country that remains far from healed.
“Haiti is not in any condition to receive anyone,” says Marleine Bastien, executive director of Fanm Ayisyen Nan Miyami Inc./Haitian Women of Miami.
After the earthquake, the Department of Homeland Security granted temporary protected status to tens of thousands of Haitians who were already in the United States, allowing them to live and work in the country.
But Joacin is in the country on a humanitarian basis, a provision granted on a case-by-case basis.
“It’s rare as far as immigration goes,” says Daniel Cosgrove, a US Citizenship and Immigration Services spokesman, noting humanitarian parole applies to those facing life-threatening concerns and lasts until those concerns are resolved.
Everyone — immigration advocates, the woman’s family, hospital officials — call Joacin’s situation vexing, because her immigration status makes her ineligible for public services here in the United States.
“It’s a tough situation,” says Marjean A. Perhot, director of refugee and immigration services at Catholic Charities in Boston.
* * * * *
In the cold of January, just days before Joacin’s flight is scheduled to leave, her husband, son, and daughter-in-law are panicking.
They’re in an awkward position. They do not want to appear churlish or ungrateful after all that Spaulding and Partners In Health have done. But they insist that sending Joacin back to Haiti amounts to a death sentence, and they are concerned their protests have fallen on deaf ears.
When Jean Paul Coffy speaks by phone with Mukherjee, the Partners In Health medical chief, six days before the scheduled flight, he believes the doctor is informing him that Joacin’s return to Haiti is a fait accompli.
“When she notified me that she was going to Haiti, she said they could have put her in the street, because they don’t want to keep her anymore,” Coffy says. “She said they don’t have another option, other than to send her back.”
He and his wife are also concerned that Spaulding and Partners In Health seem to have based the plan on consent from his mother, who has varying degrees of lucidity, and his father, who is also illiterate.
“There is absolutely no way that my mother could have the cognitive ability to make that decision,” he says. “If you ask her, she didn’t even know she was going.”
Three days before the flight to Haiti, around the time officials at Spaulding are hosting the farewell party, Coffy and his wife send an e-mail to Ophelia Dahl, executive director of Partners In Health, reiterating their opposition.
“We have made it perfectly clear that we so not want Zilania Joacin to return to Haiti,” they write.
Around the same time, a Globe reporter calls Partners In Health to ask about Joacin’s impending departure. Jennifer Brown, a spokeswoman for the charity, calls back later in the afternoon and says Joacin’s departure has been canceled.
“We don’t have consent [for her] to be released,” Brown says. “We can’t take someone who doesn’t want to go. No plane ticket, no Cange, no Haiti.”
* * * * *
When the staff at Spaulding learns that Joacin is not leaving, many are confused.
“We had the feeling that she understood,” says Susan Moore, director of case management for Spaulding Network.
She adds: “I felt badly for the staff, because they put their heart and soul into a proper goodbye, and now it’s fallen apart.”
Her colleague, Joanne Fucile, says their plan was a reasonable solution to a troubling problem.
“We thought this was a good, safe discharge,” she says. “To have this canceled at the last minute by the family was kind of disheartening, to say the least.”
The Coffys learn of the news from the Globe. They never hear back from anyone at Partners in Health or Spaulding.
In an interview at the hospital a few days after the plan is abandoned, Joacin appears confused as well. She says she was not aware that she was about to be sent back to Haiti and prefers to remain at the hospital, where she spends most of her time sitting in her wheelchair in silence, watching the commotion of nurses and doctors making their rounds. She is lost in the past and the increasing murk of her mind.
“I don’t have a house. I don’t have family there. I don’t have a place to go,” she says, her granddaughter translating.
She strains to understand the questions and nods off sporadically. Joacin, her nails painted the colors of the Haitian flag, says she passes her days watching television and thinking back to life before the earthquake, before so many friends and relatives died, when she sold cooked meals and sundries from her home.
“I think about how different I was before all this,” she says.
“I’m sorry I wasn’t the same person as I was. I’m just sorry for the overall situation.”
But Cambridge is where she wants to remain. “This is where I am. This is where I am with God.”
* * * * *
So now Zilania Joacin has nowhere to go. She remains on the second-floor of the rehabilitation hospital, visited daily by her husband, who is still living in Cambridge, and on occasion by other relatives.
Officials at Partners In Health and Spaulding are at a loss about what to do.
“I have no idea; I really don’t know,” says Mukherjee, noting that Joacin is not a patient of theirs and not their responsibility.
Spaulding officials say they will continue writing off their mounting losses for Joacin’s care and have no plans to kick her out.
They are considering the possibilities, such as moving her to one of their residential facilities, which would cost less. But that is fraught with its own problems.
“Those beds are even scarcer than where she is,” Moore says. “It would be cheaper, but for the overall system, it would be a greater burden for our patients.”
So now, she says, they are back where they started, with Joacin’s fate in limbo.
“We have no options.”