Dying Parents Haunted by Fate of Their Children

For many AIDS-infected parents, the question that haunts them is not “How long will I live?” but “What will happen to my children when I die?”

The lawyers in Montefiore Medical Center’s Division of Legal and Ethical Issues in Health Care heard that question with alarming frequency as the epidemic began decimating families in the poorest areas of the Bronx. They responded by identifying the legal problems and creating a network to deal with them.

Nationwide, AIDS is spreading fastest among women. At least 30% of Montefiore’s AIDS population is female, and 90% of those women are mothers. The city estimates that in the next decade, 100,000 children here will lose one or both parents to AIDS.

No provision exists in the state’s law for terminally ill parents to designate guardians who would assume their duties as soon as the parents become disabled or die. Guardians named in wills must still go to court to legalize the arrangement, and the children might end up in foster care in the meantime. Parents who want to avoid that often are forced to relinquish their parental rights while they are still well.

“When I initially went into court, I was dealing with a lot of hostility, a lot of suspicion, a lot of ‘What the heck is wrong with your client? How could she possibly want to give up his or her child?’ ” said Mildred Pinott, a Legal Aid attorney brought in by the Montefiore team to work exclusively with AIDS patients.

Pinott spends much of her time in Family Court, educating and experimenting. In the last year, she has handled 175 legal matters for HIV-infected parents, the majority of them guardianships. She also oversees the replication of the Montefiore program at five other city hospitals.

“The big thing that you want to give is peace of mind, and we can’t always do that,” said Diane LaGamma, a Montefiore attorney. “Everything we say is fraught with uncertainty.”

Fathers who had abandoned their families years before have kidnaped their children as their wives lay dying. Surviving spouses have attempted to derail their dead partners’ wishes, even those clearly stated in legal documents.

The epidemic, picking up speed as it rolled to the end of its first decade, has taken much of the middle generation with it, leaving fewer relatives to take over. Often, the only survivors are the very old and the very young, who often are very sick.

“These mothers, when they’re making these decisions, it means they’re confronting the fact they’re not going to be there, they’re going to die,” LaGamma said.

“But some women are never able to sit down and talk about these things because they haven’t confronted it completely. This is very final: They’re not going to be there to raise their kids.”