First of all, this post can make you feel bad, even depressed. But it’s an important issue that some parents and parents-to-be might have to face. So if you are not up to some sad posts today, please don’t read this.

It’s every mother’s, every parent’s nightmare – a baby or a child who are so ill or so extremely premature that he or she has to be placed on life-support system. The decision whether to pull the plug is one of, if not the hardest to make.

A study by researchers at the Johns Hopkins Children’s Center explores some of the communication problems between healthcare providers and parents of children in making life-and-death decisions as the one described above.

26 mothers who went through the pain of losing a baby granted in-depth interviews 3 years after and revealed the following:

Many mothers felt that doctor-parents discussions were prone to misunderstandings.

• They felt that what they were told by doctors and what is recorded in the medical chart of the patient are often at odds. One mom, for example, reported being told that “nothing could be done” but the chart discussed several options.
• Very few could recall discussions about all the options which would range from “aggressive resuscitation to palliative care through the end of life.”
• If the options were ever discussed, they were not clearly explained. Many found the “doctors’ speak” vague and confusing.
• Most moms did not trust doctors who are detached and lacked empathy.

In a previous post, I reviewed a report about obstetricians getting traumatized during difficult and sometimes fatal birth outcomes. It seems that aside from not being able to handle the emotional burden of a patient’s death, some doctors also cannot seem to empathize with family members. The authors think that many doctors

• feel uncomfortable during such emotionally intense moments.
• have difficulty in delivering bad news clearly but compassionately.
• feel that showing too much empathy can give the parents ” a false sense of hope.”

There is clearly a gap between what the parents of the patients need and what the doctors are delivering. This gap can be bridged by proper training of the doctors as well as guidelines from the doctors’ association such as the American Academy of Pediatrics, the authors conclude.