Records Reveal Deep Lack of Credit When Doctors And Parents Discuss Consequences For Sick Infants

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An analysis of 16 audiotaped conversations between parents of infants in a neonatal intensive care unit (NICU) and clinics found that medical staff often ignored quality of life issues and abandoned families are more optimistic about the prognoses of their babies than doctors intend.

An analysis report, published in the November issue of Journal of Perinatology, highlights an ongoing gap between family and clinical understanding of infant outcomes, and the need for clearer communication strategies, the researchers said.

“Parents of toddlers need conversations that can help them plan for the future of their babies and their family, and our study shows that we still have a long way to go to improve that process,” he said. of Renee Denise Boss, MD, associate professor of pediatrics at Johns Hopkins University School of Medicine and the first author of the study.

Boss said past studies of the process have largely relied on what doctors, nurses or parents remember about such conversations, which may not accurately represent what was said and what was understood.

For the new study, Boss and his colleagues analyzed a collection of 19 audio meeting records of families whose infants were in the NICU between October 2012 and October 2013.

The research team examined meetings whose attendance by physicians was identified as involving “difficult” news, such as genetic disease diagnoses or those requiring judgmental consequences regarding additional care.

Families agreed to record the meetings, and meetings included up to two family members, a doctor and a nurse.

After the meetings, participants completed a written survey in which they were asked to estimate the likelihood of the infant surviving without serious problems, and clinics were asked to judge whether continued life therapy was feasible. or should be deprived / removed from the infant, as well as the rate of their comfort in conveying bad news. A total of 16 conversations in which each had at least one part of the conversation about prediction (defined as any forecast related to the future outcome of the infant) were included in the analysis. The boss and his team coded the content of each speech for the following categories: 1) speaker; 2) prognosis timeframe; 3) subject of prophecy; 4) focus on prophecy; 5) explicidence of prophecy; 6) affective framing (pessimistic vs. optimistic); and 7) ensuring the clinic is not abandoned (statements such as “We will continue to work with you to determine what to expect for your son.”).

The analysis showed that families temporarily raised the topic of child prognosis, and clinics did so two-thirds of the time. In general, Boss said, there has been little discussion of how childbearing can affect the quality of life of the infant or family, and the prognostic statements made by clinics are twice as likely to be. optimistic than hopeful. Statements of clinics that have not been abandoned are uncommon.

Only two cases had complete clinician-parent agreement about the child’s prognosis, Boss said, and in all but one remaining cases, the parent (s) believed the prognosis to be more optimistic than clinics. In 10 of 16 (63 percent) cases, clinicians believe the infant has less than a 10 percent chance of surviving without or minor disability, but only three parents report such a percentage. .

The range of information shared by clinics is mostly extensive and practical. For example, instead of telling parents that their infant is likely to have a neurodevelopmental delay and what it will look like, parental clinics inform that the child needs “follow-up progress” and are given instructions for making an appointment with a clinic for that purpose. .

The boss recognized the limitations of a study that only examined one conversation during an infant health care journey – possibly missing other conversations without speaking – and not ‘ y communication model specifically designed for NICU parents.

However, he said, the study is expected to include measures to improve prognostic communication, such as skill training for medical staff or creating lists of questions to be asked by parents.

Other authors of this paper include Monica E. Lemmon and Pamela K. Donohue of Johns Hopkins University School of Medicine and Robert M. Arnold of Montefiore University Hospital.

Funding for this study was provided by the National Institutes of Health (1K23HD062643-01).

COI: Lemmon received compensation for working in medicine.

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