Charlotte was born with too few brain cells to do much more than breathe and pull away from pain. Most of her malformed brain was wrapped in a sac that grew outside her skull and had to be surgically removed to prevent immediate death.
Her parents were a young, unmarried couple from Haiti. They loved Charlotte and wanted her to live. The nurses and doctors thought she should be allowed to die peacefully. They recommended that a Do Not Resuscitate order be placed in Charlotte’s chart. The new parents disagreed. Surely, they thought, medical care in the United Sates could save their baby. They bought their daughter a doll.
For 16 months Charlotte bounced back and forth–between hospital, home, the ER and pediatric nursing homes. Wherever she was, every time her body tried to die, nurses and doctors staved off death. Each time, Charlotte got weaker.
Charlotte’s medical team at the hospital asked to talk with the Ethics Advisory Committee and, as the hospital’s ethicist, I got involved. Is it right to keep doing painful things just to keep Charlotte alive a little longer, her doctors and nurses asked us. To whom are we most obligated: the patient or the family? The committee advised that in this case the parents’ rights superseded the caregivers’ beliefs about what was right. Painful procedures should be avoided, the panel believed, but the care that Charlotte’s parents wanted for her should be provided unless there was a medical consensus that it would not prolong her life. Such a consensus was elusive. There’s almost always another procedure that can be tried to eke out a little more time until the patient dies despite everything–as Charlotte did.
A week after Charlotte’s death, I met with the doctors, nurses and therapists who had done everything they could for her and yet felt terrible about having done too much. We talked for almost two hours about how Charlotte had died.
“It was horrible,” said a doctor. “We tried to resuscitate her for over an hour. It’s the worst thing I’ve ever done. I actually felt sick.” A nurse talked about the holes that were drilled in Charlotte’s bones to insert lines they couldn’t get in anywhere else.
Why didn’t Charlotte’s parents spare Charlotte–and us–the awfulness of her death? Because they were too young? Too hopeful? Because they were distrustful of white nurses and doctors who they thought might really be saying that their black baby wasn’t worth saving? Or because they believed that a “good” death is one in which everything possible has been tried?
Why didn’t the hospital staff, including the ethics committee, save Charlotte from that kind of death? Maybe we feared that her parents would take us to court, like the mother in Virginia who got a judge to order the hospital to provide lifesaving treatment for her anencephalic baby, who was born without most of her brain. Maybe we were afraid of seeing ourselves in the news–as the staff of a Pennsylvania hospital did when they withdrew life support, against the parents’ wishes, from a comatose 3-year-old with fatal brain cancer. Maybe we were thinking about what was best for the parents, not just the child. Maybe we were wrong.
The nurse sitting next to me at the meeting had driven two hours from the nursing home where she used to care for Charlotte. She had attended the wake. She said the parents had sobbed; that Dad said he felt terrible because he wasn’t there when his little girl died, that Mom still couldn’t believe that she was dead.
It could have been different. They could have been there holding her. That’s the way it happens most of the time in ICUs today. Family and staff make the decision together, machines are removed and death comes gently.
As a hospital ethicist, a large part of my job is helping staff and families distinguish between sustaining life and prolonging death. Sometimes I join the staff, as I did that night, in second-guessing decisions and drawing distinctions between the dignified death of a child held by parents who accept their child’s dying, and the death that occurs amid technologically desperate measures and professional strangers.
Sooner or later, every person will die. I wish, and the hospital staff I work with wishes, almost beyond telling, that people could know what they are asking when they ask that “everything” be done.
