Doctors and hospitals are changing the way they treat dying babies.
Terminally ill infants usually end up in the neonatal intensive care unit, a busy, high-tech environment with an arsenal of life-saving medical equipment. For many, their deaths will be protracted, accompanied by futile attempts at resuscitation and invasive procedures.
But a new movement aims to change that. A cadre of neonatologists and other medical professionals are bringing elements of palliative care and hospice to the tiniest of patients. Such programs focus on the aggressive management of pain and symptoms and attention to the emotional and spiritual aspects of dying. The approach has long been available to terminally ill adults and the elderly, but it is only recently that doctors have extended such care to infants and their families. The goal is to allow gravely ill babies to die peacefully, without pain and in their parents' arms.
In the past couple of years, an increasing number of hospitals, including Monroe Carell Jr. Children's Hospital at Vanderbilt in Nashville, Tenn., and Children's Hospital of Philadelphia, have launched pediatric palliative-care programs that operate in the NICU. A number of hospice programs such as Hospice of Greensboro in North Carolina, which traditionally have brought palliative care to elderly patients, have begun accepting infants. And many doctors say they have gotten better in gauging when babies are experiencing severe pain and other end-of-life symptoms and are better able -- and more willing -- to treat them.
Doctors take pains to say that implementing palliative care isn't part of a cost-cutting strategy. But because it may cut the length of stay in the NICU, it could save money. A NICU stay, which can involve intricate surgeries and specially designed equipment such as ventilators to help tiny lungs breathe, is expensive -- especially for those babies who die shortly after birth. According to the National Association of Children's Hospitals and Related Institutions, a stay in the NICU for babies who died within three days of admission was $7,208, with an average length of stay of 1.18 days. The data are based on a 2004 survey of 59 children's hospitals.
Many programs are targeted at babies who aren't yet born, but who have been diagnosed with a terminal condition in utero. As part of the "Fetal Concerns" program for pregnant women at the Medical College of Wisconsin in Milwaukee, doctors keep morphine at the bedside during delivery, so babies with terminal conditions can be immediately treated for pain. Doctors at San Diego Hospice and Palliative Care are taking the unusual step of talking with parents about signing "do not resuscitate" orders for gravely ill babies even before delivery.
Programs say that they do encounter resistance from some parents who view this approach to care as giving up hope. Treatments to relieve symptoms such as pain may be welcomed. But doctors say it can take days or even weeks for parents to accept a terminal diagnosis and agree to stop aggressive treatment -- and some never do, continuing to want everything done for their child until the end.
Among the babies who may be candidates for palliative care are those with fatal chromosomal abnormalities or untreatable heart conditions, those who are born too prematurely to survive and those who continue to decline even after intensive treatment for an illness or injury. Advances in technology allow doctors to keep sick babies alive longer. So increasingly a decision must be made to withdraw or withhold life support before a baby dies. Palliative-care teams often are called in to help parents make those decisions.
At the Children's Hospital of Philadelphia, the two-year-old palliative-care service sometimes allows parents to choose to move their terminally ill babies to a slightly less effective type of ventilator, but one that will allow them to hold their children, sometimes for the only time. At Gundersen Lutheran Medical Center in La Crosse, Wis., a one-year-old program for pregnant women whose fetuses have a likely terminal condition helps families draw up a birth plan that spells out details including whether babies should be resuscitated if their hearts stop, whether artificial feeding is to be instituted and plans for any spiritual support, such as an immediate baptism service in the delivery room.
A handful of hospitals, including Vanderbilt's children's hospital in Nashville, are revamping their NICUs to better address the needs of dying babies and their families. Often the layout of busy NICUs makes it difficult to provide a comforting environment. The old NICU at Vanderbilt is emblematic of the norm: fluorescent lights cast a greenish tinge and seven translucent pods house tiny babies along the perimeter of the room. On a recent afternoon, one man held a baby in the lone rocking chair.
But next door is Vanderbilt's new NICU, where each infant has his or her own spacious room. The lights are low, couches and rocking chairs abound and the rooms are decorated with borders featuring teddy bears and moons. "There are children who are so critically ill that there isn't anything that all the intensive care can do for them except complicate their life with pain and suffering," says Brian S. Carter, a neonatologist and co-director of the 18-month-old pediatric palliative-care program at Vanderbilt. "We're asking, 'How can we make this a better experience for the child and the family?'"
At Sinai Hospital in Baltimore, the NICU is in the process of remodeling a private room, with soft lighting and comfortable sofas, where parents can hold their babies after they have been taken off life support. Until recently, grieving parents were separated from the rest of the unit only by screens pulled around the bedside.
In treating pain and end-of-life symptoms in infants, doctors in the past were reticent to use narcotics such as morphine, because of concern that the drugs actually could hasten death. But new research in adults showing that this isn't the case has made many doctors more comfortable with using the medications. For example, at the Medical College of Georgia in Augusta, Ga., Chief of Neonatology Dr. Jatinder Bhatia routinely uses morphine, calibrated to an infant's weight, to ease the gasping and shortness of breath that can occur when a dying baby is removed from a ventilator.
Doctors also use antianxiety medications such as Valium to help calm agitated infants. Because babies can't tell anyone when it hurts, doctors look for obvious symptoms such as crying and less-obvious ones such as an elevated heart rate, tense muscles and sweating, that can indicate that a baby is in pain. "A sweating, stiff kid is usually in pain," says Laurel H. Herbst, vice president of medical affairs at San Diego Hospice and Palliative Care.
Another major tenet of hospice and palliative care that is being applied to infants, is providing emotional and medical support that can allow patients to die at home.
When Katrina Cook's daughter, Alyssa, was born in February 2004, she knew the baby wouldn't live long. When Mrs. Cook was just four months pregnant, Alyssa was diagnosed with Trisomy 18, a chromosomal defect that causes death usually within the first year, and often within days or weeks of birth. In the past, babies with this condition likely would remain in the hospital, or families would be sent home with minimal guidance. But for the Cooks, the hospital brought in the Hospice of Greensboro to help arrange a nurse to check on the baby a couple of times a week and to teach the couple how to handle Alyssa's feeding tube. Alyssa died at home when she was six weeks old. But "we got to take her outside, take her shopping. We got to hold her," says Mrs. Cook, 29 years old, of the time she had with her daughter.