Elective Rotation: Bridging Hearts and Minds: A Genetic Counseling Student's Journey with Hospital Chaplains

Our journey as genetic counseling students is one of continuous learning, not just about genetic syndromes and inheritance patterns, but also about the intricate tapestry of human emotions and resilience in the face of medical adversity. For me, genetic counseling came after a first career path in teaching science, so the advanced biology concepts of our clinical coursework were within my comfort zone. However, I was acutely aware that I needed extra focus on knowing better that human tapestry in order to be an empathetic support to patients and families receiving genetic diagnoses. While genetics is undoubtedly crucial in our understanding of health, I realized that the human aspect, the emotional and spiritual dimensions, would also demand equal attention.

Discovering a Different Dimension of Support

The GC program at UC allows us to create an elective rotation that aligns with our personalized interests in becoming GCs, so in order to meet the gap in my skills, I kept an open mind for opportunities. During a lesson from StarShine, who help with pediatric hospice here at Cincinnati Children’s, I was able to find a unique avenue to further explore the psychosocial skills we would be learning. They mentioned a branch of psychosocial services in the hospital that intrigued me as someone with a background in comparative religion. With this inspiration, I created a 5-week elective rotation like no other that had been developed by a GC student of the program before: I embarked on the path of shadowing the chaplains of the Spiritual and Grief Services at Cincinnati Children’s.

To begin, I worked with the Director of Spiritual and Grief Services to come up with a plan. We decided I would spend a full day each week shadowing a chaplain in different areas of interest to me in the hospital. First, I would spend a day at the Heart Center/CICU, with families waiting for organ transplants for their children, then the following week, I would walk the halls of the PICU/ER, where the chaplain was the point person for the parents as they watched their child get emergency care. Later on, in the NICU, I would watch the chaplains help families spend the first months of their babies’ lives grappling with hard diagnoses. Towards the end of the rotation, I would shift to the Transgender Clinic, where the lead chaplain had pioneered work in spiritual support for members of this community, and lastly, I would shadow the chaplain of the Cancer and Blood Diseases Institute, supporting pediatric patients going through chemotherapy and bone marrow transplants. Each day would be profoundly different from the other, but I picked up on some key themes.

Walking Alongside Families

From the first moments meeting with my first chaplain supervisor, I was struck by the strength of her presence. Within minutes of spending time with her, I felt comfortable and welcome, as if I had known her for years. While I later learned this was a special talent for this chaplain, she showed me that chaplains are not just providing spiritual guidance; they are companions of families navigating the trepidations of medical odysseys. Sometimes, they attend provider team meetings with a family to advocate for extra time to understand their child’s condition. Sometimes after a family receives bad news or decides to remove life support, they sit with them just to listen. Sometimes, they simply show a parent where they can stand in the room during an emergency procedure, here close by but out of the way. Whether it was holding space for grief, offering solace in uncertainty, or simply lending a listening ear, the chaplains exemplified the art of being present. I can implement this presence in my practice as a GC by slowing down, observing silence to hold space long enough to let the human experience take place within the session.

Learning to Listen with the Heart

Another valuable lesson I gleaned from my time with the chaplains was the skill of active wholehearted listening. If a family shared a piece of good news, the chaplain responded with excitement and joy in kind, a true celebration in that moment. If they shared an emotional struggle, they returned with an empathy statement with a human element that seemed more direct: “There are no words to describe this.” “You are going through hell.” “I’m so sorry this is part of your story now.” It was more than reflecting back their emotional experience with words; it seemed to provide weight, to make it real. They asked, “What gives you strength? Who is your biggest support? What are your hopes?” In our training, we are also given standard tools of counseling that are very similar: empathy statements, psychosocial assessments, silence; this experience let me reshape those tools into what fit more comfortably in my human hands.

Embracing the Multifaceted Nature of Support

One aspect of the role of chaplain that I did not realize before this rotation was how much they also support the staff in the hospital. Not only do they provide education on unique cultural rituals or beliefs, but also, they debrief with staff after difficult emotional encounters. After the death of a patient, which a chaplain is always required to attend, they coordinate a thorough grief process that serves the team no matter their spiritual background. As psychosocial workers, we will often provide care to our fellow team members navigating tough cases, but we are not alone. There is an additional resource for us wherever we go so long as there is a chaplain service available, regardless of our spiritual affiliations.

Looking Ahead

As I reflect on my time spent with the chaplains, I carry with me a newfound appreciation for the power of connection and empathy in the realm of healthcare. Moving forward in my journey as a budding genetic counselor, I am committed to embodying these principles in my practice, ensuring that every individual and family I encounter feels seen, heard, and supported. In the intersection between genetics and humanity lies a profound opportunity for healing and growth. My clinical rotation with the chaplains has reminded me that the essence of our work as genetic counselors extends far beyond the confines of a genetic code—it resides in the hearts and minds of those we serve.

-Megan Chandler, Class of 2024

 

Elective Rotation: Differences of Sexual Development Clinic

Katherine Parks, class of 2024

I first became interested in assisting with the Differences of Sexual Development (DSD) Clinic when I was a GCA at CCHMC. Differences of Sexual Development (DSD) refer to a group of conditions involving atypical development of chromosomal, gonadal, or anatomical sex. I connected with the DSD Clinic’s GC and clinic coordinator Jodie Johnson to learn more about what role genetic counselors play in serving these patients. I was drawn to the complex social and scientific concerns that surround this clinic. 

I was able to be involved in the DSD team meetings, participate in the DSD clinic as well as the genetic counselor only clinic, and call out results. The DSD team includes behavioral medicine, endocrinology, gynecology, urology, ethics board, social workers and genetics. Prior to the monthly clinic, there is a large team meeting where all of the providers collaborate on how to best care for the upcoming patients. It was rewarding to be a part of a team that was so passionate about providing the best care possible for their patients. Each patient’s appointment was completely unique and presented their own complex emotional and scientific situations. Most patients saw all of the clinical members of the teams during their appointment at the DSD clinic. One case that stuck out to me involved a patient who was diagnosed with ambiguous genitalia at birth. The family was referred to the DSD clinic where we were able to coordinate genetic testing as well as a plan for long term patient care. While the family was understandably anxious, they seemed to be comforted by each provider they saw. It was rewarding to see all of the different providers come together and coordinate thorough and unique patient care and by the end of the appointment they seemed much more optimistic. 

This clinical rotation was valuable as I believe it allowed me to develop more skills that are critical for any genetic counselor. Like balancing clinical and emotional conversations with patients, discerning appropriate genetic laboratory/tests, and working as a member of a large multidisciplinary team. I was also able to better understand the role that genetic counselors can play in multidisciplinary clinics. Reflecting on my DSD clinical rotation, I am grateful for the mentorship Jodie was able to provide and the experiences that enriched my journey in GC graduate school. 

-Katherine Parks, class of 2024

Elective Rotation: Post-Exome Clinic

One of the things that I appreciated about my clinical training at Cincinnati Children’s was the wide variety of specialties and clinic structures I experienced throughout my rotations. In my second year, I had the opportunity to design an elective rotation, and I chose to design a rotation in the Post-Exome Clinic. This clinic primarily sees patients who are undiagnosed despite having had extensive genetic testing, such as exome or genome sequencing.

Sarah Ricks

I chose to design this rotation because I wanted to learn more about evaluating and supporting patients who remain undiagnosed after receiving comprehensive testing. In my previous rotations, I had done a lot of pre-test counseling, but had fewer opportunities to return results and evaluate if additional testing would be recommended. I also wanted to learn more about less frequently ordered clinical tests, research testing options, and unique psychosocial considerations for patients and families without a concrete diagnosis.

I got to work with both a fantastic genetic counselor and a wonderful geneticist during this rotation, and I particularly enjoyed observing how they worked together. During the monthly Post-Exome Clinics, I observed and participated in patient appointments with my clinical supervisor. In between clinic dates, my supervisor and I met weekly to review and discuss topics of interest, including a previous student research project which interviewed families seen in this clinic about their experiences during their diagnostic odysseys. Additionally, I participated in exome variant review with my clinical supervisor, which gave me additional insights into how exome testing is interpreted in our genetic testing laboratory. Finally, I also reviewed recent exome reanalysis cases performed in our genetic testing laboratory at Children’s, and analyzed what specific factors led to a diagnosis during this reanalysis.

I am grateful that I had the opportunity to design this rotation! I loved choosing and working with my clinical supervisor. I learned so much from our weekly discussions, where we talked about testing options that I’d not previously seen ordered in clinic, such as RNA sequencing and research options. I also enjoyed analyzing factors that led to diagnosis during reanalysis, as this shaped my perspective on the utility of reanalysis and the circumstances where it may be most effective. I appreciated the opportunity to better understand the experiences of patients and families who undergo comprehensive testing but are still searching for an explanation or a name to put with their condition. This elective rotation complemented the skills and perspectives that I experienced in my other clinical rotations, and I am glad that I had the opportunity to tailor a rotation to my specific interests and goals. 

-Sarah Ricks, class of 2024

2024 Winter Newsletter