Don't Tell, Don't Ask
They were born with HIV. But Dominique and Jonathan grew up ignorant about their diagnosis because their mother refused to tell them. And health care professionals who had been sporadically treating them at Jackson Memorial Hospital and the University of Miami would not disclose the information to the siblings without her consent. Not only did the mother withhold the vital information from her children, she also kept them from receiving potentially life-prolonging therapies. As a result Dominique and Jonathan (not their real names; all family members' names have been changed) did not take the necessary antiretroviral drugs, did not participate in clinical trials, and did not receive counseling.
Instead, usually during emergency situations, physicians scrambled to treat symptoms that had long been ignored. Dominique's and Jonathan's broken-down immune systems made them susceptible to any number of illnesses; sicknesses that could have been prevented were not, so life without them was unknown. But until recently the cause of their suffering was a mystery to them.
Finally in February 2000, with the approval of the Department of Children and Families (DCF), a team of specialists from publicly funded Jackson hospital and UM disclosed to then-thirteen-year-old Jonathan and fifteen-year-old Dominique that they had HIV. In Dominique's case the virus had developed into full-blown AIDS. A UM outpatient social worker who requested anonymity was among those who broke the news to the siblings. She remembers the teenagers responding bravely to the information, with few tears and many questions about how they had contracted the virus. "They were better informed about HIV than we expected," the UM social worker reveals.
Unfortunately the intervention came too late for Dominique. She died of complications from AIDS this past February.
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To many the yearslong delay in informing teens about their HIV status is unacceptable. Such ignorance can have devastating results, not only for the individual patient but for the greater public health. There is a deadly risk to minors themselves and the chance of infection of others once those infected reach puberty. In this case it wasn't until the Jackson-UM team finally referred the case to DCF as medical neglect, and the state's child-welfare agency took the reins by assenting to disclosure, that at least Jonathan was given a fighting chance to prolong his life.
As a result Alan Mishael, a child-welfare attorney, is representing Dominique and Jonathan's older brother, Antoine, in a lawsuit against the County Public Health Trust (PHT), a Miami-Dade agency created by the county commission to run Jackson Memorial Hospital. Antoine is Jonathan's foster parent and is petitioning to become the personal representative of Dominique's estate. He learned of his family's health status just last year, in the impersonal setting of a courtroom, when a juvenile-dependency judge granted him temporary custody of his brother and sister.
Mishael says Jackson's policy requiring parental consent for disclosure to minors who contract HIV perinatally violates their constitutional rights. In Dominique's case, he adds, such a policy also violated her rights under provisions of the Medicaid Act, which requires public hospitals accepting federal funds provide treatment to Medicaid recipients. For patients under age 21, the federal law also requires public hospitals give early periodic screening and diagnostic and treatment services, none of which Dominique or Jonathan was able to access, though they were covered by Medicaid during most of the time they were patients at Jackson.
In the complaint, filed in federal court this past February 12, Mishael alleges that "as a proximate cause of the PHT's decision to gag [Dominique's] physicians, she was denied the autonomy and self-determination as a human being to take action to resist dying of AIDS, and lost the chance to extend and improve her quality of life."
The suit has highlighted an ambiguous state law that attempts to regulate issues involving AIDS, minors, and parental consent. It's an ambiguity that may have remained unchallenged had this case not come along. "Even though [Dominique] has died, one of the things her older brother wants to see happen is that there are no more Dominiques," Mishael says.
The loosely defined Minors' Consent to Treatment statute 384.30 is up for interpretation, says Jack Hartog, a Miami-Dade County assistant attorney who specializes in health care law and who consults for Jackson. To complicate matters many in the health care industry assert there are no clear guidelines stipulating when to report cases to DCF involving medical neglect of HIV-positive minors. In the end, says Mishael, thanks to Jackson's unwritten policy, the child-welfare system "got left holding the bag." On April 6, 2000, juvenile dependency judge Jeri B. Cohen removed Jonathan and Dominique from their mother's custody. Had DCF known about the case sooner, perhaps the intervention would have made a difference for Dominique. Instead Jackson's policy has resulted in one casualty in Miami-Dade County's fight against AIDS.
Sherry Riley, program administrator in the Florida Department of Health's Bureau of HIV/AIDS, says Dominique's case is the first of its kind in Florida she has come across. At issue is a child's right to know, a parent's right to confidentiality and control, and what the American Academy of Pediatrics (AAP) considers the "ethical obligation" of health care professionals to examine and counsel minor patients independent of their parents. "We really are in a situation where medical practice would indicate that we should have a mechanism to disclosing to teenagers," stresses Dr. Daniel Armstrong, a member of Jackson's Pediatric Bioethics Committee. "As it stands now, it's tremendously unclear. The legal conflict is that the rights of one person are infringing on the rights of another."
Dominique was born December 12, 1984, at Jackson Memorial Hospital. Two years later Jonathan came into the world. Physicians at Jackson screened the children for HIV, and both tested positive. Their parents tested positive as well. In 1988 the family lost a fifteen-month-old daughter to AIDS. She was the couple's fifth child and had spent most of her life hospitalized. A year later the father of five left for Haiti alone and died of an AIDS-related illness in his homeland, according to Ana Garcia, head social worker and adjunct assistant professor at UM's Department of Pediatrics.
The parents had chosen to ignore the illness. By most accounts there probably was little communication between them. "The mother was very angry with her husband," says the UM outpatient social worker who wishes to remain anonymous. "In her mind she didn't fit the profile of a person with HIV. She was faithful to her husband, and she believed she had contracted the disease from him. There was a lot of resentment." Husband and wife even kept the family's diagnosis hidden from their two eldest sons, including 29-year old Antoine. He hadn't known AIDS had claimed the life of his father and baby sister, or that his mother and two siblings were HIV-positive. "I was lucky I wasn't infected," he says, his hands tightly clasped while staring down at the ceramic tile floor of attorney Mishael's home office.
Denial, resignation, and not enough education about HIV and AIDS were some of the factors that influenced Dominique and Jonathan's mother's decisions. "She didn't have an understanding of the HIV infection or AIDS virus," UM's outpatient social worker says. She attended some AIDS/HIV classes in Kreyol at UM, but Garcia believes the mother needed reinforcement from the state. "The DCF system must stay on top of education and information regarding families and children with HIV," says Garcia, who has been working with families affected by HIV and AIDS for eighteen years. "Families like this one are not getting any information from DCF." (According to Garcia the family had been on Medicaid but had lost their welfare benefits when they did not meet appointments with DCF caseworkers. "This family was so poor," she notes.)
The mother's beliefs also may have played a role in her refusal of treatment for herself and her children. "The illness wasn't a priority for her," says the UM outpatient social worker. "God was going to make everything okay; God was the only healer. Her focus was on praying and going to church."
UM's Pediatric AIDS Program at Jackson is one of the most renowned in the United States. In fact, Garcia says, together UM and Jackson handle more pediatric AIDS cases than any other program in the nation. "I'm really sure that doctors, social workers, and nurses at Jackson struggled greatly with this case," says Peter Havens, a member of the AAP, who also touts the UM-Jackson marriage as one of the most successful in the often despairing world of pediatric AIDS. Currently 320 children with HIV or AIDS are being treated at Jackson -- the majority of all HIV-infected minors in Miami-Dade County. (As of June 2000, there were 473 cases of HIV-positive children under age thirteen in the county.) Five years ago 55 underage patients at Jackson died of AIDS complications, Garcia reports. Last year there were only four deaths. But the hospital's esteemed program and hopeful statistics had little impact on Dominique and Jonathan's mother.
In 1997, at the age of thirteen, Dominique began suffering recurrent bouts of pneumonia. Three years would pass before Jackson and UM health care professionals finally disclosed to the teenager what she suffered from. By then Dominique already had developed full-blown AIDS, including signs of dementia associated with the disease.
In April 1998 Dominique's physicians at Jackson had begun noting "noncompliance with medical treatment, presenting hazards to health" and "a strong history of poor compliance with medications and clinic appointments," according to the federal lawsuit filed by Alan Mishael. Yet they took no action to address the situation. The complaint states Dominique had been suffering from numerous and severe medical complications. "She'd been a very, very sick child," says Dr. Walter Lambert, medical director of UM's Child Protection Team, a group of health care professionals who work with children and families referred to them by DCF after allegations of child abuse and neglect.
In May 1999, when Dominique did not take medication following a hospital stay for pneumonia, medical staff noted that "the patient's parent is still in denial" and that the "patient has not been compliant with medication partially because she does not know why she needs to take medication." That month a six-member team of physicians, social workers, and nurses planned to discuss disclosure with Dominique and Jonathan's mother for the first time. "We felt it would help Dominique deal with the illness better," says the unnamed UM outpatient social worker. "But Mom was very against us telling her children they had HIV." So medical staff kept silent, and Jackson's Public Health Trust did not report the case as medical neglect to Department of Children and Families partly because Dominique's mother finally had agreed to have the truth revealed during her daughter's next clinic appointment in June. But as usual Dominique missed her doctor's visit; no action was taken by Jackson and UM staff to follow up on disclosure, and PHT again missed an opportunity to refer the case to the DCF. "We refrained from pushing the issue as per further direction from legal counsel to the Public Health Trust, who advised risk management that we would not go against the parent's wishes," said the siblings' chief pediatrician, Dr. Charles Mitchell, in the lawsuit Mishael filed.
Jackson and UM staffers who worked on the difficult case with Mitchell contend he had become frustrated not only with the mother but with Jackson's policy. "Dr. Mitchell is fed up with this case, I'll tell you that much," says the UM outpatient social worker. "Mitchell was pulling out his hair," Mishael adds. "He would go to Jack Hartog and say, I want to disclose it,' and Hartog would say, No, it's illegal.'" (Hartog counsels Jackson on HIV issues and interprets the laws from which the hospital has derived a working policy. He wrote "Florida's Omnibus AIDS Act: A Brief Legal Guide for Health Care Professionals.") Mitchell declined to comment on the case.
Dominique was hospitalized a second time at Jackson in late January 2000; she had suffered from infections and a brain aneurysm. "She was in really bad condition," says the UM outpatient social worker. "She couldn't talk, had trouble eating. We didn't think she was going to survive." During Dominique's monthlong hospitalization, her mother admitted she had not been giving her children any medication. When asked to return the drugs that had been prescribed, she brought in a bagful of 32 unopened pill bottles. "[Mitchell] felt that if Dominique had been taking them regularly, the complication would not have advanced to the point in which it did," UM's outpatient social worker reveals. Though UM nurses attempted to get the family on a pill regimen by labeling medicines and outlining a timetable, "somehow the mother was not registering that accessing treatment, especially for her daughter, would have prevented certain complications," the social worker explains.
On February 15, 2000, the team of specialists held another roundtable and consulted with UM's Dr. Lambert, who recommended they report the case to DCF. Even Leslie Ann Schor, AIDS/HIV educator for staff at Jackson who along with Hartog has interpreted the state law for Jackson, advocated disclosure. "Maybe [the children] would have come up with their own decisions," Schor acknowledges. "[At Jackson] it's not an issue until it blows up into something like this. Silence is safety."
Jackson finally reported the case to DCF, and shortly thereafter, in late February, it was heard by Judge Jeri Cohen in juvenile court. In February, while Dominique remained hospitalized, four team members told her and her brother they had HIV. According to the UM outpatient social worker, Dominique confided in another social worker that she wanted to have a boyfriend and perhaps someday a family. "Does having HIV mean I can't have a family?" Dominique asked. During a second court hearing in April, Cohen ruled that brother and sister would no longer remain under their mother's care. Antoine, their older brother, became the teenagers' guardian just as it was revealed to him in court that his mother and siblings were HIV-positive. "We had to do a lot of education and preparation before placing the children with he and his wife," recalls the unnamed social worker. Dominique lived in foster care for about two weeks before moving in with her older brother, his wife, their child, and Jonathan.
Dominique's stay at Antoine's home lasted seven months. During that time he reported disruptive behavior coming from his sister. "She would break things, throw things," the social worker says. Another time Dominique tried to set her clothes on fire. In October the fifteen-year-old was put into a mental-health unit at Jackson, where she spent two weeks. Then she was placed in a foster home where she stayed until December. This past February Dominique died at the age of sixteen, bedbound, in a hospice unit at North Shore Hospital. She wasn't receiving any antiretroviral medication that suppresses the AIDS virus because it was too late for that. Instead she was on morphine for pain and antipsychotic drugs for dementia. "The medication she was getting was just to ease her suffering," laments attorney Alan Mishael.
Jackson's part in Dominique's suffering resulted from the institution's interpretation of an ambiguous state law and its unusual exception.
The law, known as Minors' Consent to Treatment, was passed in 1986. It states that health care professionals may examine and provide treatment for sexually transmittable diseases to any minor without consent of the parent. "Minors would not be deterred from seeking treatment out of fear that their parents would find out," says Sherry Riley of the Florida Department of Health's Bureau of HIV/AIDS. But the statute does not address the rights of minors who contract HIV perinatally or through blood transfusions. "This is the troublesome group," says Dr. Daniel Armstrong. "That's where we get into a real dicey issue, because at that point disclosure of the diagnosis to the child may also mean indirectly disclosing the parents' HIV status."
Jackson's attorney Jack Hartog insists his own interpretation of the law, on which the hospital has based its practice, is legally sound. "It's not absolutely clear that the provider has the legal right or duty to tell the child under Florida law in a case like this," Hartog explained in an interview before Mishael filed suit. He then allowed, "Every provider will have the same legal dilemma" in issues dealing with consent to minors who did not contract HIV as a sexually transmitted disease. "The way Florida law deals with it is that you call DCF and let the courts deal with a case involving arguable neglect," Hartog adds. "If you leave the responsibility of deciding what's best for a minor who is HIV-positive in the hands of doctors, there will be no uniformity or agreement among them on how to handle the situation. The bottom line is you want some third party.
"There is a procedure of handling this through the courts," Hartog continues. "Regardless of whether there's arguable neglect, if a minor wants to start deciding about his health, all the minor has to do is say, Doctor, I'm thinking about having sex.' The minor then becomes emancipated and becomes protected under 384.30. How much more can Florida do? Emancipate them earlier under other circumstances? When does parental decisionmaking end? How can you draw that line?"
Although Leslie Ann Schor, Jackson's HIV/AIDS educator, may have supported Hartog's reading of the law, in practice she has a very different view. When it comes to sex, Schor says, how you got HIV is less important than knowing you have it and that you can spread it to others. "Any teenager who has the comprehension to understand should be given the opportunity to make the decision to have safe sex," Schor opines.
Child-welfare attorney Mishael disagrees with Hartog's reading of law. "Florida law does not support what he's saying," he scoffs. "Besides, Florida law cannot overrule federal law. Those children had a constitutional right to know." According to Mishael federal Medicaid laws ensure that minors under age 21 can seek medical counseling and treatment independent of their parents. But for Hartog any other interpretation would mean trouble for Jackson or another provider. "The risk that the provider would be running is that they're going to be sued by the parent for breach of confidentiality," Hartog argues. Adds Armstrong: "This is a nationwide problem. There are a lot of cases right on the verge of being classified as medical neglect ... not just at this hospital but in hospitals across the nation."
In a highly publicized case in Maine, Valerie Emerson decided against giving her son Nikolas cocktails to treat HIV. Emerson already had lost a daughter to AIDS. The state's child welfare agency fought to terminate her parental rights, but in the end Maine's Supreme Court sided with the mother. Asking the state to step in, Armstrong explains, is the last thing a hospital will do in reaction to a case in which a parent decides not to have a child treated. "Our business is not to turn families in to the state," attests Ana Garcia, a UM social worker.
But Leonard Jones, director of Project Smile, a foster care program for HIV- and AIDS-infected children that contracts with the DCF, believes the framework is in place. "If a child wants to be treated and a parent refuses treatment, then DCF would step in and authorize it," Jones says. "This is not the only case we get that mothers have not been compliant with doctors."
Charles Auslander, the DCF's district administrator, contends physicians should have called in such a case upon suspecting medical neglect. "They had the obligation to at least do that," he insists. "I don't think there's a lack of clarity on when to call in a case."
Thanks to advanced treatment, a generation of HIV-infected children born in the mid- to late Eighties is fast approaching adulthood. Many may want to become sexually active, and so the issue of public health is of even greater concern for some AIDS advocates. The problem with Jackson's policy, says Hector Torres, coordinator for Care Resource's Youth Network (an outreach program that works with HIV-positive teenagers), is that it ignores a second generation of HIV-infected people who contracted the virus at a very young age, obviously not through sexual contact. "Those adolescents need to be aware that they are infected and that they can infect others," Torres says. "AIDS has been around for twenty years now. Things are different, and we have to adapt and grow. We cannot stick to old rules."
Florida legislators wrote the HIV superconfidentiality law at the height of the AIDS epidemic. It was pushed by gay men to protect them from discrimination. "Now we're finding out that the protection runs head on into the rights of another person," says Dr. Daniel Armstrong. "The majority of people in the health care environment and well-informed parents are going to say, Yes, children should know about their diagnosis.' There's so much evidence that points to the benefits. The legal conflict is that the rights of one person may go against the rights of another."
Dominique and Jonathan's situation differs from Maine's Emerson case in that cultural factors played a dominant role in their mother's decisionmaking. "There were times when it wasn't clear-cut if the mother was acting out of negligence," observes a Jackson employee. "We cannot fit our American version of what is right into the world view of someone who is not from here."
The American Academy of Pediatrics supports full disclosure to minors no matter how they contract the virus. Once a child is emotionally prepared, they have the right to be partners in their own care, says Dr. Mark Kline, chairman of the AAP's Committee on Pediatric AIDS. "They can't do that not knowing their own diagnosis," he says. Most hospitals around the nation, Kline explains, go to great lengths in trying to ensure the AAP guidelines are met. "Pretty much every pediatrician would agree that what is contained in that statement is desirable." Even if the parent could not be convinced of the benefits, Kline adds, the AAP still supports disclosing the diagnosis to adolescents. "Why should the legal guardian have veto power over that adolescent's right to know? I can't imagine why the hospital would bow to the parents. I've never encountered this situation, not with a child that age. They have a right to know."
Yet Peter Havens, also an AAP board member, warns that real-life situations aren't always that black and white. "You got doctors saying treat the kid; you got the family saying the child looks pretty good and the medicine makes him sick. It's not an easy equation. It really puts the rights of a family to determine their child's health care against the rights of a doctor to say do this. It's a very complex interaction."
Jack Hartog, the assistant county attorney who represents Jackson, admits he's not familiar with the AAP's recommendations. Instead he holds firm to what he calls the general rule of law.
Jackson pediatricians, however, many of whom also teach at UM (Jackson is UM's teaching hospital), know the AAP's guidelines well. But in order for the AAP perspective to take effect, there have to be statutory changes, says Dr. Daniel Armstrong. "[Jackson's Pediatric Bioethics Committee] is trying to develop a policy to effect legislation that will help to clear the air and provide a framework for national policy," Armstrong says.
Jackson and UM staff members who work with pediatric AIDS patients and who have sporadically dealt with Dominique and Jonathan are frustrated with the bureaucracy. "If a parent is adamant about a child not knowing about his or her illness, then there's nothing we can do," complains a Jackson employee. "The child may continue receiving treatment though they won't know what for. They can't be educated on their illness, and they can't participate in support groups with other infected children. They can't get counseling; the hospital cannot better prepare them throughout their developmental years. It becomes especially problematic when they start entering sexual maturity. This case has divided so many people."
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