Prolonged Survival Frequent After Withdrawal of Neonatal Nutrition and Hydration

Kate Johnson

October 06, 2010

October, 7, 2010 (Montreal, Canada) — Neonatal survival after withdrawal of artificial hydration and nutrition can last up to 26 days, according to a case series presented here at the 18th International Congress on Palliative Care.

Although physical distress is not apparent in the infants, the psychological distress of parents and clinicians builds with the length of survival, said Hal Siden, MD, from Canuck Place Children's Hospice in Vancouver, British Columbia.

"These babies live much, much longer than anybody expects. I think that neonatologists and nurses and palliative care clinicians need to be alerted to this," he said.

"The time between withdrawal of feeding and end of life is something that is not predictable, and you need to be cautioned very strongly about that if you are going to do this work."

He presented a series of 5 cases that clinicians at his hospice had overseen over a 5-year period. Two infants had severe neurologic impairment, 2 had severe hypoxic ischemia, and 1 had severe bowel atresia.

The infants were transferred to the hospice from neonatal intensive care after their families had received an average of 3 consultations with the hospice team, reported Kerry Keats, MSW, who is Dr. Siden's colleague at the hospice, and a coinvestigator and copresenter.

After feeds and hydration were discontinued, the mean duration of survival was 13.2 days (range, 3 to 26 days), she said. Infants' ages at death ranged from 18 to 67 days.

Both opioids and benzodiazepines were administered to the infants during this period, said Ms. Keats. These included morphine, fentanyl, lorazepam, and diazepam.

"Parents really wanted to know that medications were being used because they didn't want their child to have the sensation of hunger in any way, shape, or form," she said.

"Families were absolutely clear about that each time," added Dr. Siden. "They wanted to see absolutely no signs of discomfort. Babies cry, that's normal, but this was not acceptable, so we were using sedatives to really dampen that out."

Despite this, there is one factor that medication cannot alleviate, and that is the visual signs of emaciation, said Ms. Keats.

"The longer a child lives, the more emaciated he or she becomes. This is something that we as clinicians need to anticipate. You can alleviate some of the physical symptoms, but this is one symptom, or result of our action, that we can't relieve. A critical factor for counseling is to anticipate the kind of suffering that comes with witnessing the emaciation. It isn't something people can prepare themselves for."

Autopsies are often encouraged in such neonatal palliative care cases to help both parents and medical staff gain a better understanding of the reasons for the death, said Dr. Siden. Parents should be warned that the report will document the technical cause of death as "starvation" — a loaded word for all concerned. It is important that parents separate this word from any notion of suffering, he said.

"All of the children we've cared for have been in a very quiet, low metabolic state — not an agitated state — with no overt signs of hunger behavior. Whether they are neurologically capable of hunger behavior is another question, and I don't know the answer. That's why I am trying to understand better what they are going through, because I don't want them to suffer," Dr. Siden explained.

He emphasized the importance of more research into the physiologic processes that occur after withdrawal of fluids and nutrition so that clinicians can both inform and reassure parents.

"There's an ethical component to doing research. If you don't do research yourself, you need to support those who do, because we desperately need to know more," Dr. Siden asserted. "There's a technical aspect to what we do, and we need to become really good at that because we need to be able to say to people, without a doubt, that we are going to do this and there is not going to be any kind of suffering. You've got to be very on top of your game."

Case studies such as this are very sparse in the literature, but provide critical information for clinicians in palliative care said, Joanne Wolfe, MD, session moderator and director of pediatric palliative care at Children's Hospital Boston, in Massachusetts.

"It comes up all the time. It's very hard to study because this is ethically a very sensitive area. From a clinician's perspective, it's an everyday occurrence in the pediatric setting. It's most common in the neonatal intensive care setting with immediate efforts to resuscitate newborns . . . but it comes up again later with this type of case."

An informal poll of the room by Dr. Siden revealed that most of the attendees had direct experience with this type of case.

"This study lends support to the decision-making process and gives both the clinical team and family preparation for what's to come," said Dr. Wolfe.

"Not everybody is comfortable or aware that it's morally and ethically permissible to make decisions to discontinue these types of interventions. This study highlighted those key things more systematically — that it's acceptable and it doesn't invoke suffering — while acknowledging that there is a physical change that we need to be prepared for, and that we need to help the family prepare for and proceed through."

The presenters and the commenter have disclosed no relevant financial relationships.

18th International Congress on Palliative Care Abstract S5-E. Presented October 5, 2010.

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