During my time as a Pitt genetic counseling graduate student, I have had the unique opportunity to pursue interests in ethics, decision making, and palliative care in a variety of different ways. My part-time research job is in the University of Pittsburgh Critical Care Medicine Department, and I was privileged to be a part of the Jewish Healthcare Foundation Fellowship on Death and Dying. As I participated in more of my genetic counseling rotations, it was only fitting that I would pursue palliative care in the clinical setting for my optional rotation.
The pediatric palliative care team (often referred to as the supportive care team) at Children’s Hospital of Pittsburgh was gracious enough to allow me to join them during February and March. I could not have had a more stimulating and meaningful experience observing the team and applying my knowledge of genetics and counseling to many of their patients.
During initial visits with families, palliative care is described as a service for children with life-limiting or life-threatening conditions with four main purposes: decision-making support, pain management, hospice and end-of-life care management, and connecting all services and specialties together to increase communication within the interdisciplinary team. Palliative care is not just about death and dying, but about helping children and families deal with difficult decisions and improve quality of life.
During my optional rotation, I had the opportunity to see patients with genetic conditions such as Duchenne Muscular Dystrophy, long QT syndrome, Amish Infantile Epilepsy Syndrome, and multiple congenital anomalies. I was even able to work with genetic counselors to counsel a family with a child who was diagnosed with a rare genetic condition. The parents were struggling with deciding if a tracheostomy and ventilator would provide enough quality of life for the child, and one of my counseling goals was to help them understand his possible prognosis based on other children with this same condition. As I worked with this family, I observed a care conference in which we discussed the psychosocial, medical, and legal ramifications of the parents’ decision-making.
The care and time spent with every patient and family was beyond inspiring. It is not surprising that I learned many lessons about my counseling and psychosocial skills by watching the team help families navigate their children’s illnesses. Although some might find this work too difficult or emotional, the families appeared to appreciate this service and it was so rewarding to be a part of it. My experience was invaluable, and I hope that the connections I made will allow future genetic counseling students to learn from the pediatric palliative care team.
- Becca Vanderwall, Class of 2016