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
