A New Approach For the Sickest Babies

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A New Approach For the Sickest Babies

Some Hospice Programs Begin Accepting Infants; Managing Pain in the NICU

By ANDREA PETERSEN
Staff Reporter of THE WALL STREET JOURNAL
July 26, 2005; Page D1

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.

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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.

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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... 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.

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Write to Andrea Petersen at [e-mail]

URL for this article:
http://online.wsj.com/article/0,,SB112233423121595506,00.html (subscription)