Vanessa Battista, , MS, RNC-MNN, CNE, Jonas ScholarJohns Hopkins University DNP
Vanessa Battista, MS, RN, CPNP-PC is a board certified Pediatric Nurse Practitioner and a member of the neuromuscular team at The Children’s Hospital of Philadelphia (CHOP). Previously, she practiced as an advanced practice nurse on the Pediatric Advanced Care Team at CHOP, as well as the neuromuscular centers at both Columbia University Medical Center and The Children’s Hospital of Boston, before being recruited to The Boston College Connell School of Nursing to develop the Pediatric Palliative Care Masters subspecialty program. Ms. Battista serves as a board member and consultant for various organizations that provide services for patients and families living with life-threatening diseases. She lectures and teaches at the local, national, and international level, and is a member of the ELNEC pediatric faculty. Ms. Battista is an active reviewer for publications and grants, and has authored several book chapters and articles on various aspects of pediatric palliative care and neuromuscular disease. She earned her bachelor’s degree from Boston College in psychology, with minors in health sciences and faith, peace, and justice studies; her nursing degree and master’s degree from Columbia University School of Nursing; and completed a certificate in Pastoral Ministry at the Boston College School of Theology and Ministry. Ms. Battista is currently obtaining her Master of Business Administration and Doctorate of Nursing in Executive Leadership from Johns Hopkins University. Ms. Battista was the recipient of the ELNEC Award for Excellence and the Distinguished Young Alumni Award from Columbia University, and has achieved Clinical Master Leader status at CHOP.
Research/Clinical Practice Area: Jonas Veterans Healthcare Scholar – Palliative Care
Dissertation: Advance Directives for Young Adults Living with Neuromuscular Disease
Due to medical advances, children with neuromuscular disease (NMD) who once had limited life-expectancies are now surviving into adulthood (Schrans et al., 2013). The transition from pediatric care to adult care is an appropriate opportunity for healthcare providers to discuss care preferences and goals with young adults who have NMD, but advance care planning is often overlooked during this time (Birnkrant et al., 2018).
In the absence of documented advanced directives, young adults with NMD are at risk for dying without having their wishes known (Hiscock, Kuhn, & Barclay, 2017), despite studies showing the physiological and psychological benefits of discussing and planning for end of life (Abbott, Prescott, Forbes, Fraser, & Majumdar, 2017). This kind of support is not routinely offered to young adults with NMD, making it, in turn, more difficult to discuss these topics within families (Abbott, et al., 2017). Not discussing or documenting advance directives not only adds to undue suffering for families, which creates ethical dilemmas, but also potentially increases unnecessary healthcare costs at the end-of-life (Dixon, Matosevic, & Knapp, 2015).
Abbott, D., Prescott, H., Forbes, K., Fraser, J., & Majumdar, A.
(2017). Men with Duchenne muscular dystrophy and end
of life planning. Neuromuscular Disorders, 27(1), 38-44.
Birnkrant, D.J., Bushby, K., Bann, C.M., Apkon, S.D., Blackwell,
B., Colvin, M.K.,â€¦Ward, L.M. (2018). Diagnosis and
management of Duchenne muscular dystrophy, part 3:
primary care, emergency management, psychosocial care,
and transitions of care across the lifespan. Lancet
Neurology, 17(5), 445-455. doi: 10.1016/S1474-
Dixon, J., Matosevic, T., & Knapp, M. (2015). The economic
evidence for advance care planning: systematic review of
evidence. Palliative Medicine, 29(10), 869-884. doi:
Hiscock A., Kuhn I., & Barclay, S. (2017). Advance care
discussions with young people affected by life-limiting
neuromuscular diseases: A systematic literature review
and narrative synthesis. Neuromuscular Disorders, 27(2),
115-119. doi: 10.1016/j.nmd.2016.11.011.
Schrans, D.G.M., Abbott, D., Peay, H.L., Pangalila, R.F.,
Vroom, E., et al. (2013). Transition in Duchenne Muscular
Dystrophy: An expert meeting report and description of
transition needs in an emergent patient population:
Parent Project Muscular Dystrophy Transition Expert
Meeting 17-18 June 2011, Amsterdam, The Netherlands).
Neuromuscular Disorders, 23(3), 283-286. doi: