About a month ago, Anthony Stokes was a 15-year-old who enjoyed playing basketball. Then came the sleep troubles and the stomachaches. When the chest pains started, his mother took him to the hospital.
Tests revealed that his heart is dangerously weak, so weak that doctors at Children’s Healthcare of Atlanta at Egleston began considering a transplant. His mother, Melencia Hamilton, said they told her that without a new heart, he has just six to nine months left to live.
But they also told her that, in their view, Anthony does not qualify as a candidate for a heart transplant.
The reasons aren’t clear. The hospital is prevented by privacy laws from discussing the case, so virtually all information is coming through Hamilton and people who have rallied around her. And they have turned Anthony’s plight into a public controversy, complete with racial overtones.
Hamilton, 36, who lives in Lithonia, said hospital officials stereotyped her son, who wears a court-ordered monitoring device, as a troubled teen. “It just seemed they decided he’s a trouble-maker, and that’s not true,” she said.
In a letter to the family, the hospital said Anthony was ineligible due to “a history of non-compliance.” That typically refers to a patient who has failed to follow prescribed treatment plans, but Hamilton said that, until now, Anthony has had virtually no medical problems.
She believes the doctors are judging him on some trouble he got into (the monitor is for fighting at school, she said), as well the fact that she is ill, the family has little money, and they are black. She said he does not drink or take drugs.
She is on Medicaid and he is on PeachCare, Georgia’s health insurance program for needy children. She is unemployed and has congestive heart failure, she said. She believes the doctors think she would be unable to care for her son after a transplant.
Doctors, she said, told her “he would not take his medication, not attend follow-up doctor appointments and probably end up on the streets.”
Children’s Healthcare of Atlanta released a statement Monday suggesting that the decision may not be set in stone.
“We never stop working to help our sick patients. In all transplant cases, we work closely with the family and their support network to coordinate the best possible result for the patient, and continue to find solutions. In this particular case, we are continuing to partner with the family.”
A patient rejected as a candidate by one treatment center also can apply elsewhere to get on the list, said Joel Newman of the United Network for Organ Sharing, which manages the nation’s organ transplant system under contract with the federal government.
Anthony suffers from dilated cardiomyopathy, in which the heart’s main pumping chamber, the left ventricle, fails to pump enough blood. The condition is generally treated with medications or devices such as pacemakers before a transplant is considered.
His case highlights the sometimes stickier factors hospitals weigh as they evaluate who should receive transplants.
Because the demand for new hearts, kidneys, livers and other organs is far greater than the supply, doctors must try to determine not only which patients are the most desperately ill, but which will experience the greatest benefit from a transplant. The doctors can’t know any patient’s future; they can only make predictions – educated guesses – based on the histories of many other, earlier patients with similar conditions.
In weighing each potential candidate, the doctors look not just at his or her physical condition but so-called “psychosocial factors.” That includes the patient’s mental state, certain behaviors –including how well he or she has followed doctors’ orders in the past — and the strength of his or her support network. Some studies have linked certain factors with post-transplant complications: youth, lack of education, depression, anxiety, anger and hostility, drug or alcohol abuse and troubled family relationships.
But the research is not conclusive, and applying such criteria can lead doctors into morally and politically dangerous territory. In 2006, the authors of an article in The Journal of Heart and Lung Transplantation acknowledged that danger, writing: “Care must be taken to ensure that psychosocial factors predictive of outcome are not confused with judgments of an individual’s social worth.”
Similar concerns spurred the Georgia chapter of the Southern Christian Leadership Conference to take up Anthony’s cause. SCLC officials met with his mother and hospital officials.
“They said he was being denied because, based on demographics, age and race, it was more than likely he would not comply,” said the chapter president, the Rev. Samuel Mosteller. By that reasoning, he said, “black male teens are never going to meet any of the criteria, simply because they are young and black.”
Brian Jones, 57, received a kidney from his sister, Andrea Ashmore, 13 years ago. He said it’s vitally important that organ recipients follow their treatment plans. Even now, he takes nearly a dozen different drugs a day and goes to the hospital once a month for testing.
“If you want to keep your donated organ working, you have to take your meds,” Jones said.
But the prospect of death should motivate even a somewhat mixed-up teenager to follow doctor’s orders, said Mark Pastin, president of the Health Ethics Trust, based in Alexandria, Va.
“If ‘non-compliant’ means that the child simply does not follow directions, it is hard to fathom that someone facing death couldn’t be influenced to change their ways,” he said.
Staff photographer Curtis Compton contributed to this report.