Turning the Grief-Stricken Toward Organ Donation

[okarol]

January 16, 2007

Turning the Grief-Stricken Toward Organ Donation
 
By RICHARD PÉREZ-PEÑA, New York Times

There was barely a mark on her 9-year-old daughter’s head, and when doctors told Surangni Gunaratne that the girl she adored was brain dead, she responded with fury. “I yelled at them, I said they had no feelings,” she said, “and I told them to get out.”

But over the next few days, the people at St. Vincent’s Hospital Staten Island helped Mrs. Gunaratne accept that Tiffany was gone. Kathleen Atkinson was an especially persistent presence, doing a little of everything, from fetching coffee and fending off paperwork to shooing away friends who sometimes crowded around Tiffany’s bed.

Ms. Atkinson works for the New York Organ Donor Network, not the hospital, and her mission during that week last July was to persuade Mrs. Gunaratne and her husband, Ajantha, to donate their daughter’s organs. Five days after Tiffany was hit by a car outside her family’s house, her liver and kidneys were transplanted, prolonging the lives of three strangers, one of them just 7 years old.

Such tales have become increasingly common as organ donation across downstate New York has risen sharply, to 319 donors last year from 199 in 2001. According to the Organ Donor Network, the main reason for that success is people like Ms. Atkinson.

The job she holds, family services coordinator, did not exist five years ago. Today, the network has 20 people doing that work full time, offering whatever practical or emotional help a grieving family needs while making a pitch for organ donation.

“This has completely altered the way we deal with the family, and it’s no surprise better relationships mean better results,” said Elaine Berg, president of the network, which covers New York City, Long Island and five Hudson Valley counties.

One of 58 regional organizations designated by the federal government to find organs, the New York network traditionally lagged well behind other parts of the country. There were some years when fewer than 40 percent of potential dead donors’ families in the region gave consent to take their organs, compared with 50 percent or more nationally.

But last year, the New York network reached a 56 percent consent rate, its highest ever, closing the gap with the rest of the country as the national rate rose to near 60 percent. In recent years, the federal government has prodded the regional groups and hospitals to improve their performance, at times bringing them together to compare techniques.

Most organs go to people in the regions where they are donated. So the shortage of donors in New York has meant that people in the region wait longer to receive transplants and are more likely to die while waiting than are people in most other parts of the country.

Administrators at some hospitals in New York concede that they once paid too little attention to organ donation. St. Vincent’s in Staten Island, whose name changed this month to Richmond University Medical Center, did not put anyone in charge of the field until about a year ago, said Dr. Ruth McAuley, who now has that responsibility. The hospital’s consent rate has risen to 80 percent from 13 percent.

Ms. Berg said her group worked more closely with hospitals than it used to, and increased the number of volunteers who go to community groups promoting organ donation. But the most important change, she said, has been the family services coordinators.

Paul Schwab, the executive director of the national Association of Organ Procurement Organizations, said, “That’s a recent approach that has gained a lot of momentum, and probably half our member groups are doing it now.” The organizations are supported mostly by charges added to hospital bills under federal law, but they also get government grants and raise charitable donations.

There are not nearly enough organs to go around, and many people die on waiting lists, so the procurement groups see each potential donor as essential. Because of the effects of illness or accident, only about 1 percent of the people who die in hospitals each year are judged to be suitable donors.

When a hospital has a brain-dead patient who might be a donor, it alerts its regional procurement group. That organization sends a nurse to assess the potential donor and take steps to keep organs working.

Until a few years ago, the standard practice was to have that nurse, along with hospital staff members, help the family and broach the subject of donation. But the New York Organ Donor Network concluded in 2002 that the job was too much for one person, and it began hiring and training family coordinators.

“We connect them with social workers, clergy, anything they need, and we go to the funerals and keep up with them afterwards,” said Ms. Atkinson, 42, who lives in New Jersey with her 13-year-old son. “We had a family from Mexico who needed family members to get here, and we worked with the consulates.”

Some of the family coordinators’ relatives have given or received organs. Some are chosen in part to reflect the ethnic communities they will work in. All receive training.

As the team of family coordinators grew, the Organ Donor Network assigned them to specific hospitals that they visit a few times a week, whether or not a potential donor is there. They conduct training sessions on organ donation for hospital staffs, audit patient records to make sure that potential donors are not being missed, and get to know the nurses and doctors who work with the most severely injured patients.

Walking into the surgical intensive care unit at Richmond last week, Ms. Atkinson was greeted by the nurses as an old friend. They recalled going together to a wake for Tiffany, and talked about how the Gunaratne family was holding up.

The work is emotionally draining, especially in the case of a child like Tiffany. She was a bright, outgoing child — “the center of love in our house,” her mother said — who loved dogs and earned pocket change by dog-sitting.

On a Monday morning last July in the Randall Manor section of Staten Island, a driver on busy Henderson Avenue swerved to avoid Sammy, a little mixed-breed dog that Tiffany had taken in as a stray and nursed to health. The car hit Tiffany as she stood at the curb.

When they first met in the hospital, Mrs. Gunaratne, who is from Sri Lanka, chastised Ms. Atkinson for wearing a white sweater and jewelry — in her culture, she said, inappropriate garb in the face of grief. Ms. Atkinson took off her jewelry and wore only black the rest of the week.

“The people in the hospital have a job to do, but it seems so cold,” said Mrs. Gunaratne, 46, who has three surviving children. “I got so angry, I asked so many questions. I must have been the most difficult parent they ever had.”

Eventually, she said, Ms. Atkinson and some of the nurses were able, gently, to change her view. “I could see that this way, one good thing could happen from this,” she said.

She consented to the organ donation but insisted that Ms. Atkinson and a nurse accompany Tiffany the entire time.

“She didn’t ask me, she told me,” Ms. Atkinson said. “She said: ‘You will go to the operating room and stay with her until it’s over. You won’t leave her side.’ ”

They still talk once in a while, conversations that often produce tears from both. In person, they greet with hugs.

To this day, Mrs. Gunaratne dresses in black, and instead of jewelry she wears a rubber wristband that says “Donate life.” The sounds of sirens stop her cold. Her two teenagers can barely bring themselves to talk about Tiffany.

On her mantelpiece, Mrs. Gunaratne keeps a picture of Tiffany, with a wide grin and big, dark eyes, flanked by candles that she lights daily.

Last week, with some urging from Ms. Atkinson, she wrote her first letter to the recipients of Tiffany’s organs, people whose names she does not know.

“I would love to meet them someday,” she said, “and see part of her still living.”

URL: http://www.nytimes.com/2007/01/16/nyregion/16organs.html