Denver Bio-Ethics Conference
(see a review of this conference by Dr. John Carey in Professional>Professional Viewpoint)
By Pam Healey
In early October in Denver, a group of SOFT parents professionally involved within the trisomy community joined other professionals, including neonatologists, pediatricians, genetic counselors, palliative care doctors and nurses, a hospital chaplain, a pediatric
cardiologist, a writer who is a developmental psychologist working with parents with the most vulnerable children, and geneticists. There were researchers and those on the front lines. All had both passion and wisdom. Individuals had extensive experience with different aspects of medical and counseling support.
One goal was to move away from the silo approach with each specialist working separately, to a collaborative approach with clinicians working together. The task was to determine the pathways that should be defined to best meet the needs of infants with trisomy 18 and trisomy 13. The pathway might start at prenatal diagnosis or immediately after birth when a diagnosis is suspected. Just as there are cairns along a mountain trail to the summit, there are decision points along the way, the summit being longer survival or more comfortable survival for a shorter time. The pathways might be determined by letting go or holding on.
On each pathway are specific tasks that can be undertaken, decisions that may become the cairns for the best route. The goal was to find the right pathways between doing too little and doing too much for children with an extra chromosome and significant medical complications.
We met in our large group of more than thirty people, and shared our ideas. We were not coming together to settle an argument, to determine winners or losers within a philosophical argument. Our mandate was to share ideas and determine specific recommendations we could agree on. Our model was to be an interdisciplinary team considering what is best within certain cultural, fiscal, legal, technological and ethical constraints. We built on what was said, disagreed some, elaborated initial ideas and worked to be specific and realistic in recommendations. We learned from each other, collaborated and became engrossed in the difficult work of integrating so much experience and so many ideas.
We sat in a banked circle in an impressive new amphitheater in the Bioethics and Humanities Center at the University of Colorado Anschutz Medical Campus. We introduced ourselves and defined our experience relevant to the trisomy community, were educated by presentations, challenged by tasks. We used information from the presentations about recent research in meeting the demands of the mission ahead of us. As a group we shared insight, asked questions and narrowed our definitions and suggestions. We filled many pages of newsprint that were taped across the room. Later, we broke into smaller focus groups to define specific pathways and what needed to be considered and done.
We returned to the larger group and shared the details of our discussions. We spoke of what small and large actions needed to be taken and who should be involved. We tried to consider those whose voices were not included: surgeons, labor and delivery nurses, parents who chose to terminate, siblings and the infant with trisomy 18 or 13. I was part of the diagnosis after birth group. We discussed language, procedures, both the information given and its timing. The point of view shifted within our group of parents, doctors, nurse, genetic counselor and chaplain. We saw the situation differently but shared common concerns and outcome. We learned from each other and began to build our pathway, each decision point a cairn marking our path. We acknowledge the importance of calling each newborn by his or her name. We acknowledge that the birth was a celebration, despite a looming probable diagnosis. We talked about language given to describe the disorder and how genetic results would be shared. We considered interventions along the way and what they meant, including intubation, nutrition, medication, and surgeries. We considered the power structure and the need to empower parents by giving information and listening.
Together we added individual perspective gained by experience and education, and collaboratively built our pathway which would best provide care for newborns with trisomy 18 or trisomy 13 and support for their parents. Together, in each focus group we
built cairns that will guide parents and their doctors, nurses, counselors, psychologists, and chaplains in the future, so fewer stray from the optimal pathway and meet with avoidable disappointment or second guessing. Through the two days we acknowledged
that despite the best efforts of all those involved with doing what is best for a newly diagnosed fetus or infant, the diagnosis remains a medically serious one, even if it is not necessarily universally lethal. No one’s pathway is easy, direct or predictable.
Knowing the possible challenges, areas of disagreement and probable unclear outcomes helps all those involved move forward. The work we did was an important beginning to a process that will continue.