The MU Health Systems Journeys Program offers crucial support for children facing complex and life-threatening medical conditions, alongside their families. Navigating these challenging situations requires a comprehensive approach that addresses not just the physical health of the child, but also their emotional, social, and spiritual well-being. Many families and healthcare providers are seeking to understand the nature of this support and often ask: is the MU Health Systems Journeys Program considered palliative care? This article will explore the services offered by the Journeys Program to clarify its role in pediatric complex care and how it aligns with, and potentially incorporates, palliative care principles.
Understanding the Journeys Program at MU Health Care
The Journeys – Pediatric Complex Care Team at MU Health Care is dedicated to providing a circle of support for children and families as they navigate serious medical journeys. This multidisciplinary team is composed of professionals with diverse expertise, including:
- Christina McHenry, CCLS (Certified Child Life Specialist)
- Sarah Younger, MD, IBCLC (Physician, International Board Certified Lactation Consultant)
- Lacey Prater, MSW, LCSW, APHSW-C (Medical Social Worker)
- Sheila Zaweija, FNP (Family Nurse Practitioner)
Their collective expertise allows the Journeys Program to offer a range of services designed to ease the burden on families and improve the quality of life for children facing significant health challenges.
Is Journeys Program Palliative Care? Exploring the Services Offered
While the Journeys Program may not be explicitly labeled as a palliative care program in every context, it undeniably embodies many core tenets and provides services that are integral to palliative care, especially in the pediatric setting. Palliative care focuses on relieving suffering and improving quality of life for patients and their families facing serious illness. Let’s examine how the Journeys Program services align with this philosophy:
Symptom Management: A Key Aspect of Palliative Care
A central component of palliative care is the effective management of distressing symptoms. The Journeys Program directly addresses this by offering treatment of symptoms. They explicitly state their support includes helping to manage symptoms such as:
- Pain
- Shortness of breath
- Fatigue
- Constipation
- Nausea
- Loss of appetite
- Difficulty sleeping
This proactive approach to symptom management is a hallmark of palliative care, aiming to enhance the child’s comfort and overall well-being, regardless of the curability of their condition.
Care Coordination: Streamlining a Complex System
Navigating the healthcare system with a child who has complex needs can be overwhelming. The Journeys Program offers care coordination to alleviate this burden. They act as a central point of contact, working with the child’s:
- Primary doctors
- Specialists
- Community providers
By coordinating appointments, insurance matters, and other logistical details, the Journeys team simplifies the process for families, allowing them to focus on their child. This coordinated approach is essential in complex care and aligns with the holistic approach of palliative care.
Goal Setting and Advanced Care Planning
Palliative care emphasizes patient and family-centered goals. The Journeys Program incorporates goal setting by actively listening to the priorities of the child and family. They help families articulate and prioritize what is most important to them in their current situation.
Furthermore, the program assists with planning, including:
- Advanced care planning: Helping families document their healthcare wishes for their child.
- Long-term planning: Addressing future care needs and transitions to adult care when appropriate.
These planning services are vital components of palliative care, ensuring that care aligns with the family’s values and preferences throughout the child’s journey.
Disease Management and Supportive Care
The Journeys Program also engages in disease management with the aim of optimizing the child’s health and preventing unnecessary hospitalizations or emergency room visits. This proactive and supportive approach is consistent with palliative care principles, which seek to provide comprehensive care that goes beyond just treating the disease itself.
Compassionate Support Services: Extending Beyond Medical Needs
Beyond the direct medical and care coordination services, the Journeys Program provides compassionate support services, particularly vital in situations involving loss and bereavement. These services include:
- Bereavement support: Offering educational and supportive resources to parents following the death of a baby or child.
- Memorial services: Hosting events to remember and honor children who have passed away.
- Education for MU Health Care staff: Improving the overall care provided to families experiencing loss within the hospital system.
These bereavement services are a critical aspect of palliative care when it extends to end-of-life care and support for families grieving a loss.
Conclusion: Journeys Program and Palliative Care Principles
In conclusion, while the MU Health Systems Journeys Program may be described as a “Pediatric Complex Care Team,” its services strongly resonate with the principles of palliative care. The program’s focus on symptom management, care coordination, patient and family-centered goal setting, advanced care planning, and compassionate support services all align with the core aims of palliative care: to enhance quality of life and provide holistic support for children and families facing serious illness.
For families seeking comprehensive support for a child with a complex medical condition, the Journeys Program at MU Health Care offers a valuable resource. If you believe your child could benefit from their services, please ask your medical provider to consult the Journeys team. For further questions, you can contact the Journeys team directly at 573-771-4266 or email Lacey Prater at PraterL@health.missouri.edu.
