Ethics in Neonatology
Katharina Staub takes a stand on the Canadian Pediatric Society’s Position Statement on: Counselling and Management of Anticipated Extremely Preterm Birth.
Drs Batton and Batton have made some excellent points about counselling and management for possible preterm birth for both babies and families.
Families with prematurely born children are thankful for the advanced medical care available in Canada and the support that the staff give them. We value the lives of our children, despite the challenges that might exist. They bring joy to those who love them. As a society we need to advocate for the most vulnerable.
The position statement published by the Canadian Pediatric Society on the counselling and management of anticipated extremely preterm birth, seems very black and white. Approximate gestational age is one factor, but prenatal steroids given to the mother, weight, and general well being of the baby are other important factors when making decisions about “management” of the baby. For families these are very difficult and emotional decisions that are often not expected. Parents rely on the neonatologist to provide them with comprehensive and accurate information. Many parents want to consider “everything that can be done”, for their child because it is theirs and they want to share their lives with this baby. Different parents have different views about death and disability and these can differ from those of health care providers.
From a parental perspective, there are omissions in this Statement. The inclusion of a section on guidelines about communication with parents would be crucial. Discussions should be sensitive to the culture of the family. Communication should be personalized and in reference to each unique baby in the context of his/her own family, not simplified to a number of completed weeks of gestation. Prospective parents at risk of delivering preterm are all different. Some want a lot of information, some want general information, some want the long term prognosis, others want to know about the day to day life in the NICU. All parents need time and patience.
We disagree that all families need to receive extensive information, statistics and numbers about all the negative outcomes preterm infants may have. Families primarily decide with their heart. The decision that is taken for ones’ child has an impact on a family forever.
Many of us had extensive ante-natal consultations where the neonatologist exposed us to a list of adverse events; many of these consultations were so negative and devoid of hope that we became very anxious and stressed. This is not healthy for the unborn child. We think that antenatal counselling should also include the positive outcomes, that extremely preterm babies have a good quality of life, whether or not they have disabilities, that their families usually adapt and thrive and experience joy.
The premature baby is viewed as generating high cost to our society by the authors of the CPS statement. The statement does not once say what preterm babies and children can do, how they live happy lives and what they bring to their families and communities. There are many reasons to have hope and at the very least, not take all hope away from families when they are faced with difficult decisions. We believe this statement needs to be revised urgently. Complex decisions cannot be made simple because it may seem easier, it is not how life works.
Katharina Staub, President of CPBF-FBPC and mother of prematurely born twins at 27 weeks and 2 days in 2008.