In this second part of a two-part interview series, Dr. Taylor speaks on her work at the Teen and Young Adult Health Center, fertility preservation in young cancer patients, and her advice for future healthcare providers. Dr. Taylor is a pediatrician and founder of the Center for Biomedical Ethics & Humanities at UVA.
Can you expand on the work that you do with the Teen and Young Adult Health Center?
One of my areas of focus is eating disorders in adolescents and young adults. Treating patients with eating disorders is both the most challenging and rewarding part of my job. We started the eating disorder program about 2 years ago. We currently provide interdisciplinary (nurses, physicians, dietitians, social worker, case manager) outpatient eating disorder treatment to patients and families (because eating disorder treatment involves the whole family). We are hoping to add a parent support group soon and in the next 10 years I would like to expand our team to include mental health providers who can provide eating-disorder-specific individual, family, and group therapy.
You work a lot with fertility preservation in children and adolescents with cancer. What are some of the biggest barriers in this field for the healthcare providers, the children and the families involved? When does a child’s interest in reproductive choice become apparent, and when do they get to make the choices?
This is an area of research interest for me because the answers to some of your questions are still unknown. Parenting desire and intention, when it develops, how it changes, how it is influenced by illness is understudied and much of the research focuses on choices to prevent pregnancy (when and how teens decide to use a condom, etc.). Also, how parents, adolescents, and providers navigate these discussions and decisions is still being explored.
As to the barriers, not all medical centers have established fertility preservation programs accessible to pediatric and adolescent patients, so location alone is a barrier for providers and patients interested in exploring preservation options. Also, counseling about fertility preservation requires a detailed understanding of the options and the risks/benefits of each, a conversation many providers feel ill-equipped to have with younger patients and their families. Cost is another issue - fertility preservation is not typically covered by insurance and if you think about the cost of storing gametes or other reproductive tissue for 10+ years, expense is a major concern for many families.
What advice do you have for new and future health care providers?
Take time. Don’t rush it; the knowledge about specific diseases and treatments will come with time and experience, but the ability to connect with patients, to read the emotion in a room and respond to the questions the family is too scared to ask is a skill that takes practice, devotion, and time. Stay in the room, ask the hard questions, and really listen to the answers.
Learning to identify and understand your own emotional responses to all that you encounter (death, life, healing, loss, conflict) in medicine and in clinical ethics is an essential skill. Try to start cultivating it early!
This interview has been lightly edited for length and clarity.