Where birth meets death
Perinatal hospice care prepares parents for the end, at life’s beginning
THE baby who would soon die arrived at 34 weeks, eyes shut, squawking. Her father cut the umbilical cord with a pair of silver scissors. A priest in blue scrubs sprinkled holy water on her forehead. A photographer circled the delivery room, capturing her last moments.
And Cathleen Warner quietly marvelled: my baby is crying.
The doctor had said the infant’s lungs could never fill with air. Prenatal testing five months earlier had revealed a chromosomal abnormality called trisomy 18. “Incompatible with life,” the physician told her on the Saturday phone call. Warner had dropped to her knees in the kitchen.
Now the baby’s heartbeat was fading. But she was still breathing. Perhaps they’d have at least five minutes together, Warner thought. She kissed the newborn’s cheeks, just like she’d envisioned, and prepared to say goodbye.
This is perinatal hospice, a birth plan that revolves around death. Thanks to increasingly sophisticated diagnostics, families today can confront tragedy with advance notice, and a decision: should they terminate a pregnancy that cannot sustain life, or deliver a baby who won’t survive long outside the womb?
This dilemma is steadily creeping into America’s abortion debate, with some Republican lawmakers using perinatal hospice as a political tool. Over the past decade, anti-abortion activists have worked with legislators to push the care model into mainstream consciousness, promoting bills they hope will steer women away from a procedure they consider murder.
Last month, Indiana became the sixth state to require doctors to counsel women who have received fatal fetal diagnoses about perinatal hospice before they terminate a pregnancy.
The care model is a bundle of services, untethered to a hospital or medical centre. Hospice nurses and social workers help families prepare for loss, coaching parents on what to say to siblings and co-workers. They take calls at 2 a.m. They recommend family therapists for couples whose relationships strain under grief. They teach mothers to deliver painkillers to a dying infant, should the baby live long enough to go home.
Perinatal hospice, however, isn’t connected to religion, said Tammy Ruiz Ziegler, a Virginia nurse who started Mary Washington Hospital’s program in Fredericksburg, Va., in 2006.
Ruiz Ziegler has met parents from both sides of the ideological aisle who have decided to continue nonviable pregnancies. Some feel it helps them grieve, she said. Some want to know they’ve done everything they could.
“Eleven years ago, when I first brought this idea up to physicians, they stared back at me like there was something genuinely wrong with me,” Ruiz Ziegler said.
“Today those same doctors are my staunchest supporters.”
They’re acknowledging a demand for an alternative to abortion for women carrying non-viable fetuses, a need that previously received little attention, she said.
Before technology offered families any warning, doctors who delivered terminally ill or stillborn babies would often take them away from their mothers to die. In the 1970s, as genetic testing gained prominence, parents moved toward expressing their own preferences. Mothers and fathers requested to hold their babies, if only for a minute.
A children’s hospital in Denver became the first in the U.S. to develop hospice care for terminally ill infants in 1980, according to the Catholic Health Association of the United States. The program started as a separate room for grieving families in the neonatal intensive care unit. Psychiatrists instructed nurses on how to talk to parents in moments of stress.
Perinatal hospice grew as more parents connected online and learned about what has since become a flourishing community, Ruiz Ziegler said. Most hospitals will accommodate a parent’s end- of-life wishes, if they ask. But hospice care creates an especially gentle environment with professionals trained to handle despair.
By 2006, when Ruiz Ziegler started, about 40 medical centres in the U.S. had some type of formal perinatal hospice program, according to PerinatalHospice.org, a website that tracks formal programs. Today, there are 202.
“After a diagnosis, I ask the parents, ‘What would you like to see happen?’” Ruiz Ziegler said. “We tailor the experience entirely to them.” Families can invite a religious leader into the delivery room. They mould their infant’s footprints in clay. They sing lullabies, prepare bubble baths and hire a photographer.
Ruiz Ziegler stays nearby to provide emotional support or pain medication for a baby who appears uncomfortable. A child can live for minutes, she said, or weeks.
I Nrecent months, perinatal hospice has emerged at the centre of the debate in the U.S. over when life starts and how it should end. Indiana’s law, which takes effect July 1, requires the state health department to create brochures about the service. Gov. Mike Pence (R) called it “a comprehensive pro-life measure that affirms the value of all human life.”
The mandate’s authors borrowed a strategy from national anti-abortion groups such as Americans United for Life and National Right to Life, which provide model language about abortion alternatives to state lawmakers.
Mary Spaulding Balch, director of state legislation for National Right to Life, started working on perinatal hospice laws about 10 years ago, she said, when Minnesota became the first state to require doctors
Cathleen Warner holds a teddy bear with the recorded heartbeat of her daughter Erin.