Dr Grace Ng provides a summary and an update on last month’s case.
Thank you once again for your contributions in this case discussion. I will start the summary for this case by continuing the story of patient A.
Prior to discharge, a joint family conference between the managing neonatologist, the palliative home care team and parents was held to introduce to team and to address any concerns parents had about going home. The parents were very relieved to know that they had additional support at home.
The transition home was smooth, and because of the groundwork that the inpatient team had done with the family from diagnosis till discharge, parents were clear about the goals of care of their child, which was for comfort, and were prepared for his eventual demise.
Baby A remained fairly asymptomatic over the one week he was at home before he passed away. He had a few episodes of crying most likely related to hunger, which resolved quickly with allowing him to suckle on a pacifier dipped in milk. Parents were glad to hold him and the team helped with memory making activities such as taking family photos and footprints of the child as a keepsake. He passed away peacefully cradled in his mother’s arms.
Allow me to now summarize some of the learning points from this case
Firstly, for such cases with an antenatal diagnosis, early discussion and preparation of the family and the team is crucial. A multidisciplinary meeting including the family during the antenatal period is important, which should include a clear explanation of the diagnosis, the possible outcomes and therapeutic options. With input from the parents, a shared birth plan might be useful to ensure that all stakeholders (parents, OT staff, obstetricians and neonatologists) are on the same page at delivery and prepared for the decisions that need to be made. As more information on the baby’s condition emerges after birth, the parents should be continually updated, their concerns looked into, and be supported in their decision making process and in the psycho social spiritual domains.
In the scenario whereby no further curative intervention is available and the family decides to bring their child home for comfort care, such as in the case presented, the following issues should be looked into before discharge. Firstly, if the baby is being discharged home with tubes and lines, caregivers should receive adequate caregiver training and should be comfortable and confident in attending to the needs of their child at home. Health care providers managing the child at home should be given information on what symptoms to expect. Such complications include, hypoglycaemia, seizures, dehydration, infection, gut perforation, line thrombophlebitis and hypothermia. Planning for the management of such scenarios in advance may give health care providers greater confidence in managing such a unique case at home.
Though issues around hydration and nutrition are contentious, the decision making process can be guided by ethical principles of beneficence and non-maleficence. The burden of interventions must not outweigh the desired benefit to the baby and family and again, unbiased honest information is important for shared decision making between the health care providers and family.
While navigating the complex medical issues of this child, it is equally important to identify things that can be done to make the most out of each minute, hour and day the family has with the baby so that no matter what the outcome may be, quality of life is maintained not only for the baby but also for the family members.
Thank you once again for your participation in this case discussion and I hope to see you again for our next case!