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Tough to Talk When a Newborn is Dying

End-of-life decisions are trying no matter the circumstances. But when the end of a life comes near its very beginning, discussions about what to do are all the more wrenching. The emotional trauma of delivering a terminally ill or severely premature baby is often compounded by unsatisfactory communications between physicians and parents, a new study shows.

Reporting in the September issue of Pediatrics, researchers at the Johns Hopkins Children's Center found that, among 26 mothers of babies who died soon after birth at three mid-Atlantic hospitals, many had recollections of discussions with physicians that diverged dramatically from what was recorded on the newborns' medical charts.

Interviewed an average of three years after the loss of their babies, the mothers by and large didn't remember their doctors' talking with them about the full range of options for caring for their babies, which, for those with fatal anomalies or who are younger than about 22-25 weeks at delivery, range from all-out attempts to keep them alive to keeping them comfortable until they died.

Renee Boss, the study's lead author and a neonatologist at Johns Hopkins Children's Center, says that "Quite a few women didn't really remember having any discussions at all, even when those discussions were reflected on the chart."

Not that anyone is being untruthful: Boss notes that women's memories may well -- and understandably -- have been muddied not just by the time that had elapsed between the death of their babies and their being questioned for the study but also by the circumstances surrounding that death. "The women and their partners are gong through a crazy and chaotic experience," she says. "That emotional trauma can make it terribly difficult to hear what a physician is saying."

Many women reported making decisions based on their own religious or spiritual beliefs; they often maintained a sense of hope in spite of their doctors' grave prognoses. Moreover, many reported that they would have appreciated their physicians' offering compassion and a sense of hope instead of cold, dispassionate appraisals of their babies' likelihood of surviving.

One wrote:

"I felt that they could have had a little more compassion instead of being so negative, especially when a hospital is known for good research and good procedures and stuff. Just be more optimistic. It's really important for a parent to hear some hope, although the rationale says that this is 90% going to happen this way negatively."

What do you expect of your physicians during times of crisis? Do you value their showing emotion and empathy? Or do you prefer a more stoic, clinical presence?

By Jennifer LaRue Huget  |  September 22, 2008; 7:00 AM ET
Categories:  Family Health  
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Comments

Sympathy, empathy and compassion are different than offering false hope which only leads to anger, resentment, and inevitably more pain. Perhaps the parents are saying they want more hope, but what they really are wanting is someone who will be honest, yet cry with them over the pain of losing a newborn.

Posted by: Sarah | September 22, 2008 8:26 AM | Report abuse

Having gone through this very thing, I have to say that I don't remember anything after hearing the official diagnosis and "incompatible with life." I know my husband asked questions about options and treatment, but I could not tell you what the doctors said then. What I found invaluable about our doctor was that she gave us a phone number that we could call anytime and ask questions. It allowed us to call back when we were emotionally able to talk about options.

Unfortunately, in many cases, the decisions need to be made quickly, and the chance to digest the initial diagnosis and carefully weigh the options is not available. I think those parents often end up unsatisfied with their care.

Posted by: Anonymous | September 22, 2008 11:58 AM | Report abuse

i lost a baby in my 6th month. the medical term for my condition is "FDIU", "Fetal Death In-Utero." basically, the fetus (baby) died, but didn't spontaneously miscarry, and i had to have what amounts to an abortion to remove the baby from my body before i became septic. i recall quite clearly that my OB/GYN was terrified about telling me that the fetus was not viable. she simply couldn't get the words out, and quickly referred me to another department in the hospital for a more thorough (and invasive) ultrasound, leaving it up to that doctor to deliver the bad news. the abortionist was a complete jerk, with absolutely no bedside manner whatsoever, who dismissed my pre-op questions with a wave of his hand: "I know what I'm doing. Just leave it up to me." oh, because it was all about HIM, right? so my limited experience with this delicate and painful subject is that doctors - ALL doctors - need to live in the real world, and practice medicine in the real world . . . the real world where not every baby survives pregnancy or delivery or infancy. as a child i heard someone say that death is every doctor's enemy. enough of that!! grow up! we all have to go sometime, and even obstetricians have to get over the stars-in-their-eyes phase of their careers, the part where they gush and tell their friends, "I became a doctor because I want to bring new life into this world!!" sometimes these doctors will have escort new life out of this world, too. it's just the way it is. i would have been more appreciative of frank, honest talk, some hand-holding, lots of kleenex, and lots of reassurance that this wasn't my fault (it wasn't, but it's my nature to internalize bad news and take blame where there is none to take.) instead, i was given the bum's rush repeatedly, and as a result, my emotional healing was aggravated and prolonged, unnecessarily.

[NOTE: for the record, i want you to know that the physician who read the second ultrasound was unusually compassionate. a technician performed the actual procedure, but had difficulty reading the screen, probably because she'd never seen a situation like mine before. she called the doctor over, and he made some adjustments and said to her, "Oh, here's the problem. There's no amniotic fluid. That's why there's no heartbeat." Then he realized what he'd said, and he blushed a little, leaned over and very gently took my hand and said, "I'm so sorry." he looked liked he would cry. the young woman who did the ultrasound actually did cry. it didn't feel GOOD, but it felt RIGHT. unfortunately, that was my only dealing with that kind doctor.]

Posted by: sleepwalker | September 23, 2008 9:44 AM | Report abuse

I've been in the situation where admitted to the hospital in my 24th week of pregnancy with possibility of early labor at any time. I remember one of the nurses brought up the doctor from the NICU to talk about possible "end of life" decisions; however, the dr actually helped raise our expectations and optimism by saying these are "beginning of life" decisions. That type of optimism helped me get to the 27th week before I delivered. A good doctor can provide that type of optimism while balancing it with reality on the type of decisions families have to make. (At 11 months old, the baby is doing very well:-))

Posted by: beenthere | September 23, 2008 3:53 PM | Report abuse

I too lost a baby at 32 weeks--16 years ago today I was in labor with her. Tomorrow is the anniversary of the day we held her. My docs & nurses were terrific. They were tuned in enough to realize that both my husband and I were doing "too well" and were probably in shock. They arranged for the hospital social worker to visit; she provided us with much useful information which really helped us through the difficult time after our daughter's birth.
Of course, different people need different things--there's not just one right way to behave. I had an unbearably sad experience but feel very fortunate about the care I received.

Posted by: Another Story | September 23, 2008 9:26 PM | Report abuse

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