When John H. Stroger Hospital in Chicago started its palliative care program in 2001, one of the first patients was an immigrant who wanted to return to his native Poland to die.
As she listened to his request, Catherine Deamant, M.D., the program's director, remembers thinking, " 'Oh—this is not something you read in a book.' We had to figure out what it would mean logistically to assist him in making that arrangement."
With no precedent to guide them, Deamant and her colleagues at the public hospital called consulates and wrote letters to airlines. They quickly realized that this could turn into something other patients and families would want.
"It's another layer of the care plan in my mind," Deamant says.
Thirty-eight percent of patients who come through Stroger's palliative care program are foreign-born. About half want to travel to their home country to die, and half of those are actually physically able to make the trip.
Sometimes, patients are forthright about spending their final days in the motherland. "Other times," says Deamant, "we bring it up and they express such tremendous relief: 'Oh, that's what we were wondering, but we didn't know if it was possible.' "
Seven physicians work part time on Stroger's palliative care team, along with a nurse, social worker and bereavement counselor. From 2005 to 2007, they sent 57 patients home to 23 countries. In just the first few weeks of 2011, they helped get one patient to Pakistan, one to Poland and another to Mexico.
Over the years, the team has honed its protocol to a three-page checklist. They systematically work with a physical therapist to assess ability to travel; determine what is needed to make sure the patient is comfortable during the long journey; communicate with family members in the home country; work with consulates to make sure paperwork is in order; and obtain clearance for the patient from commercial airlines and airport security. Stroger provides 30 days' worth of medication to any patient leaving the hospital.
"What each of us learns from the experience of sending someone, we add to our protocol so that any of the members of our team could assist somebody in that way," says Deamant.
Each patient brings a different set of problems. "If somebody has a tracheostomy, they may need to suction themselves periodically—so we had to figure out which suction machine is airline-authorized," Deamant says. If a patient on a flight is too weak to make it to the bathroom, the solution might be a Foley catheter and medication to prevent bowel movements.
Staffers once went to court for a cancer patient who had been placed under guardianship years before, after suffering a traumatic brain injury. The palliative care team thought he was capable of making his own decisions; the judge agreed, and the man returned to Poland.
Sometimes arrangements are wrapped up in a few days. But they take longer if a patient requires physical therapy to build up strength for the trip, or needs paperwork from a consulate.
If patients are undocumented immigrants, "the name that they're using may not be their real name," Deamant says. "There's the issue of trust-building, and letting them know that we're trying to help them and getting them to trust us enough to tell us their real name."
Patients and their families pay for the trip themselves. "There's always a cost because this is such a sudden decision, but I don't think that's a big deterrent. The families become very resourceful," says Orlanda Mackie, M.D., another member of the palliative care team, adding that the families often raise funds within their ethnic communities or religious affiliations.
Some patients die within days of arriving, while others may live weeks or even months. Deamant and her colleagues keep in touch with the families.
"We're always holding our breath until somebody gets there," she says, "and then we breathe when we find out they're there. They're still ours even when they leave our doors."