Exploring harm: parents making informed decisions about autopsy after a perinatal death

© 2015 Dr. Jennifer Anne LivingstonChanges were made to informed consent procedures at an Australian tertiary women’s hospital to remedy local and worldwide evidence that details of planned autopsies of babies had been commonly and deliberately kept back from bereaved parents. The main omission was the retention of organs and tissues from the autopsy by the hospital. However, hospital professionals had ongoing concerns that discussing autopsy and making decisions about it would cause additional harm to grief-stricken parents. Recently bereaved parents experiencing perinatal death including neonatal death, stillbirth, late miscarriage or mid-trimester termination of pregnancy for foetal anomaly were interviewed to determine whether their autopsy discussion experience and making decisions about perinatal autopsy caused them harm. Hypotheses about possible harms from involvement in the autopsy discussion and decision-making about autopsy were generated from the literature and these were tested against the parents’ actual experiences and concerns elicited in the in-depth interview. I have shown that the efforts to correct past failings have improved informed consent to perinatal autopsy. Parents understood their involvement in perinatal autopsy consent to be one of the many new and usually unexpected responsibilities arising from a perinatal death. From the perspective of parents, the autopsy discussion and decision experience caused no harm to them over and above that associated with a perinatal death. I found parents keen to discuss their organ and tissue preferences with me and discovered that doctors had not discussed organ and tissue retention with parents to their satisfaction despite the importance of this aspect to the revised autopsy consent discussion. Parents’ experience of an improved version of informed consent to autopsy caused them to question the way they provided “informed consent” in other contexts associated with the perinatal death. Parents considered these other decisions more important for them than the autopsy decision. Contrary to the autopsy consent experience, parents found both inevitable and preventable harms from perinatal death and hospital services associated with supporting the perinatal death. These harms would be mitigated with improved processes surrounding informed consent more generally and additional to the autopsy discussion. These findings are important. I have shown that parents expected and wanted the responsibility for making decisions about autopsy. Parents see autopsy as an important option in finding the cause of death of their baby; this is when there is doubt about the cause of death and to validate a decision to terminate the pregnancy mid-trimester. Autopsy is accepted as a means to an end and not a source of harm despite its intrusive nature. I have demonstrated that the central reason for the improved autopsy discussion – parent knowledge of organ and tissue retention – remains undiscussed in the detail required by parents. I found that parents’ views about tissue and organs varied; they were different from current legal and medical views about belongingness. This conundrum remains unresolved. I recommend further exploration of doctor’s reasons for not discussing organ and tissue retention. It is fundamental to understanding the reasons for this important impasse