PPMD webinar explores how palliative care teams can support families through decision making

PPMD’s Alexis Hazlett and Patrick Moeschen were recently joined by panelists Dr. Lauren Treat, Neurologist and Palliative Care Physician at Colorado Children’s, Susan Parzymieso, a Duchenne mom, and Colin Werth, PPMD’s Adult Advisory Committee (PAAC) President, for a discussion around the role that palliative care can play in the lives of individuals and their families living with Duchenne and Becker. Some of the key points discussed include:

• Palliative care is different from hospice care. While they may intersect at times, it’s important to note that palliative care can provide support throughout one’s life 
• Palliative care services are holistic and focus on the entire family unit, as opposed to the individual diagnosis. The team can discuss how patient and family values may guide treatment decisions and help identify and support what is most important to the individual and their family. 
• Early introduction to palliative care is important.  By standardizing palliative care as part of the medical team and identifying misconceptions early on, it can be easier for individuals and families to have difficult conversations with a care team they know and trust.
• PPMD Certified Duchenne Care Centers have access to palliative care services in the neuromuscular clinic. If you have not been introduced to the palliative care team (PaCT) before, ask to meet with them when calling to confirm or schedule your next appointment. Because multidisciplinary clinic visits can be long, many centers have the ability to provide telemedicine appointments for palliative care during a separate visit. 
• If your neuromuscular clinic does not have access to palliative care within their hospital system, be sure to ask about local agencies who may be able to provide these services.

Palliative care is a support system for you and your family. They help support you in times of decision making, transitions, pain and symptom management, and more.

If you are having difficulty finding this support in your clinic, please reach out to careteam@parentprojectm.org or schedule a PPMD For You to discuss how we can help. We welcome your thoughts, feedback and questions. Together, we are stronger.