Miscommunications between parents and doctors
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.
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Melissa H says...
I can atest to the miscommunication that can occur between neonatal doctors and parents. When my daughter was in the NICU it was like pulling teeth to get any kind of positive news. We would walk in to be with our daughter and we would be jumped with terrible reports. Our daughter eventually died when her kidneys failed. We would have done anything to hear a little bit of positive. One visit with our daughter when the doctor jumped us I asked him if there was anything positive that he had to give me… he stopped and then listed three different things that had improved… and add that it didn’t mean much in the long run. I told him that our little fighter had to take on one thing at a time. As I was walking away he told my mother in law… that I had to start seeing the truth. That there was little hope. My mother in law told him that was my daughter and I was looking for what hope I could until the time came that there was none. Eventually my husband and I had to take her off of life support. But the staff in the NICU worked so hard on trying to make me see how little chance she had that they refused to look at what hope there was. They gave up on Aislynn long before she breathed her last breath, and that is one of the saddest memories I have of her short little life.