Reflections on the Recent Bioethics Conference in Denver
By John C. Carey, MD, MPH, Medical Advisor, SOFT
On October 5 and 6 of this year (2012), I had the opportunity to attend and participate in an exciting conference at the Center for Bioethics and Humanities on the Medical Campus of the University of Colorado. The Conference was creatively entitled, “Perinatal and Neonatal Decisions: A Pathways Approach Using Trisomy 18 and 13 as a Paradigm,” by its Director, Dr. Peter Hulac. The meeting involved over 25 participants from various disciplines, including developmental pediatrics, neonatology, medical ethics, nursing, palliative care, pastoral care, and parents of family members with trisomy 18.
SOFT was well represented at the Conference: Besides myself, Ann and Frank Barnes, Pam Healey, Jude Wolpert, and Scott and Vivian Showalter joined this multidisciplinary group. Scott and Vivian had a major role in helping Dr. Hulac plan and host the meeting. In addition to SOFT, the Conference was sponsored by the Bioethics Center, the Neonatology Division of the University of Colorado’s Department of Pediatrics, and the Trisomy 18 Foundation.
The purpose of the meeting was to discuss decision-making in the care of babies and children with trisomy 18 and 13 in the context of a care model called, “Pathways.” Dr. Hulac and colleagues had adapted this approach to decision-making from a spinal injury clinic at the University of Colorado. Pathways emerged as one of several main themes discussed at the Conference. Pam Healey has nicely summarized the structure and content of the meeting in her accompanying piece in this issue of SOFT Times (Nov, Dec, 2012 & Jan 2013), and I recommend reading Pam’s article as well. I would like to focus my reflections on another theme that was suggested early in the opening minutes of the Conference: “Shared decision-making as a working, guiding principle.”
The singular idea that shared decision-making would occur in the initial diagnosis of a fetus or infant with trisomy 18 & 13 reshapes the current paradigm whether we are discussing the prenatal or neonatal setting. From my experience in talking to families and doctors around North America over the last 2 decades, the approach at the time of diagnosis tends to be more directive—rather than a model that would include families and health professionals making care decisions together. If we as health professionals and families embrace this guiding principle at the time of diagnosis, the problems(and tension) with the “status quo”, as articulated by Dr. Hulac in his opening comments, would change-I believe- to a more balanced approach.
In the afternoon our working group broke into smaller units that were charged with applying the pathway model to various decision points in care (e.g. the time of first obstetric concern, the anticipation of delivery room care of the baby, etc.). As we split up into our individual group meetings, Dr. Hulac provided us with four questions (previously offered by one of his colleagues, Dr. Glover), useful in framing the initial approach to the counseling of families in difficult medical situations. His thought was that these queries might be helpful in pondering the Pathways model in the various scenarios:
- What is the understanding of your child’s (fetus) condition (“fetus” added by me)?
- How has the illness affected your family?
- What is most important in the care of your child?
- What do you fear most? What would you like to avoid?
- What are your sources of strength and support?
Incorporating an approach using these questions and shared decision-making early in the process of diagnosis whether the setting is prenatal or perinatal—I would propose— “reshapes the current paradigm”. Along with these potential guiding questions listed above, I would suggest—as I did in the recent paper in Current Opinion in Pediatrics—that this process should include “presentation of accurate (and current) figures for survival that take into consideration the individual clinical findings…, the avoidance of language that assumes outcome…, a realistic but balanced communication of developmental outcome that does not predispose that one knows the family’s perception of quality of life, and the recognition of families choice whether it be (pure) comfort care or (medical) interventions”. The ultimate plan of the group is to summarize the ideas and principles discussed at the Conference in a publication in a medical scientific journal. I certainly look forward to that goal.