Sunday, June 26, 2016

Palliative Care Optional Rotation

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

Saturday, June 11, 2016

Sickle Cell Advocacy Day

As part of my graduate student hourly work position with the Children’s Sickle Cell Foundation, I recently had the opportunity to go to Harrisburg for Pennsylvania Sickle Cell Advocacy Day. Advocacy Day is a day that is designated for advocates, healthcare professionals, and those living with sickle cell disease to come together at the Capitol Building to help educate policy makers on why funding for sickle cell disease is so important. As part of House Resolution 888, the designated day this year was May 17, 2016 as proposed by Representative Wheatley of District 19. It was a wonderful opportunity to get a better understanding of health policy, and the difference that advocating can make not only on the policy makers, but also on individuals who are affected by sickle cell disease. Advocacy Day allowed those Living Well with Sickle Cell® to share their stories with others who are living with sickle cell disease, those who support individuals living with this disease, and the policy makers who influence the funding for research of this disease. The funding for sickle cell disease has recently been cut from $2.6 million to $1.2 million as part of the $32 billion Pennsylvania state budget. The money provided from the budget goes to research, educating doctors and patients about the best and most effective treatment options, and other organizations working to help individuals living with sickle cell disease.

The Children’s Sickle Cell Foundation came together to advocate for sickle cell disease with other organizations across the state including the Sickle Cell Disease Association of America, Philadelphia Chapter and the South Central PA Sickle Cell Council, and people who are participants in these programs and currently Living Well With Sickle Cell® as well as their family members. The Advocacy Day began with a press conference where directors from the different programs, local representatives from Pittsburgh and Philadelphia, health care professionals and a few individuals living with sickle cell disease spoke about personal experiences with this disease and how to best advocate to secure the proper funding and support. The local representatives who spoke on behalf of Allegheny County were Rep. Jake Wheatley and Rep. Ed Gainey along with the Executive Director of the Children’s Sickle Cell Foundation, Michael Matthews, as well as Dr. Laura DeCastro, one of the hematologists who provides medical care for individuals with sickle cell disease in Pittsburgh. Afterwards, both of the Representatives gave us a tour of the Capitol Building. While there, we had the pleasure of meeting with the Pennsylvania Legislative Black Caucus to address the issue of the funding for sickle cell disease from the State as part of the budget. In this meeting, some of those who are Living Well with Sickle Cell® were able to share their stories. One incredible young man who is only 17 years old presented a documentary that he created about sickle cell disease and the challenges faced each day by those living with the disease. Overall, participating in Advocacy Day in Harrisburg seemed to be a positive experience for all those who were involved, and I found it especially inspirational to see everyone supporting one another in their individual struggles with sickle cell disease.

- Brooke Hornak, Class of 2017