The child neurologist at the University of Colorado School of Medicine talked about her presentation on end of life care for patients with neuromuscular diseases at the 2023 MDA conference. [WATCH TIME: 5 minutes]
WATCH TIME: 5 minutes
“If you can standardize your practice about when you bring up conversations related to what end of life care might look like, or what choices might even come up in different phases, that will then allow you as a clinician to feel a greater sense of calm and predictability again in these very chaotic times.”
Pediatric patients with neurological conditions such as neuromuscular diseases (NMD) are among the most frequent recipients of palliative care, which seeks to support the quality of life for patients and families affected by the disease. There are a variety of critical elements that differentiate pediatric palliative care from adult care, including longer duration of illness, longitudinal relationships over time, diseases characterized by chronic fragility instead of progressive pathology, and parents as representative decision makers.1
Recently, at the 2023 Muscular Dystrophy Association (MDA) Clinical & Scientific Conference, March 19-22, in Dallas, Texas, Lauren Treat, MD, presented in session based on considerations for end of life care. Experts in neuropallitive medicine, including Treat, discussed in the session clinical care for patients with advanced NMDs that have a high risk of death. The topics in the session covered balancing comfort with safety, promoting dignity, supporting caregivers, and addressing moral injury in care teams.2
Treat, child neurologist at the University of Colorado School of Medicine, sat down with NeurologyLive® in an interview at the conference to provide an overview of the session. She talked about the collaborative effort between the clinicians, the patients, and the families in the pediatric field for having end of life care conversations. Treat, a pediatric palliative medicine physician, shared her thoughts on the most important aspect of care for these patients during this time in their life and what clinicians should consider.