Navigating complex or life-threatening medical conditions in children requires specialized and compassionate support. The MU Health Systems Journeys Program is designed to provide this crucial assistance to children and their families. Understanding the nature of this support often leads to the question: is the MU Health Systems Journeys Program considered palliative care? While the program shares key principles with palliative care, it’s important to understand its comprehensive approach to pediatric complex care.
Defining the MU Health Systems Journeys Program
The Journeys – Pediatric Complex Care Team at MU Health focuses on supporting the physical, social, emotional, and spiritual needs of children facing serious medical challenges. This multidisciplinary team, comprised of professionals like Christina McHenry, CCLS; Sarah Younger, MD, IBCLC; Lacey Prater, MSW, LCSW, APHSW-C; and Sheila Zaweija, FNP, offers a range of services aimed at improving the quality of life for both the child and their family.
These supportive services are tailored to meet the unique needs of each family and include:
- Symptom Management: Addressing distressing symptoms such as pain, shortness of breath, fatigue, and nausea is a core component. The Journeys team focuses on enhancing comfort and minimizing discomfort for the child.
- Care Coordination: Navigating the healthcare system can be overwhelming. The program assists families by coordinating care among various specialists, primary care physicians, and community providers, streamlining appointments and managing complex medical logistics.
- Goal Setting: Understanding and respecting the values and priorities of the family is paramount. The Journeys team facilitates discussions to help families identify and work towards their goals for their child’s care.
- Disease Management: The program aims to optimize the child’s health and well-being, helping families manage the child’s illness effectively at home to reduce the need for hospitalizations and emergency room visits.
- Advanced Care Planning: Supporting families in making informed decisions about their child’s future care is a sensitive yet essential aspect. The Journeys team provides guidance in creating advanced care plans that reflect the family’s wishes.
Palliative Care and the Journeys Program: Clarifying the Connection
While the Journeys Program is not explicitly defined solely as palliative care, it undeniably incorporates many palliative care principles. Palliative care is a holistic approach that focuses on improving the quality of life for patients and their families facing life-limiting illnesses. The Journeys Program embodies this philosophy by prioritizing comfort, symptom management, and emotional and spiritual support.
However, it’s important to note that the Journeys Program serves a broader spectrum of children with complex medical conditions, not exclusively those at the end of life. It provides support throughout the child’s illness journey, which may include curative treatments alongside supportive care. In essence, the Journeys Program can be seen as a comprehensive pediatric complex care program that integrates palliative care principles to enhance the overall well-being of children and families facing serious health challenges.
Compassionate Support Services Extend Beyond the Child
Recognizing the profound emotional impact of serious childhood illness and loss, the Journeys Program extends its compassionate support to bereavement services. Understanding that the death of a child is a deeply traumatic experience, they offer:
- Bereavement Resources: Providing educational materials and supportive resources to parents navigating grief after the loss of a child.
- Memorial Services: Organizing memorial events like the “Remembering our Children Memorial Service” in April and the “Remembering our Babies Memorial Walk” in October to honor and remember children who have passed away.
- Staff Education: Training MU Health Care staff on providing sensitive and specialized care to families during times of loss.
These bereavement services are available to any family who has experienced the loss of a baby or child up to age 21, regardless of whether the loss occurred within the MU Health Care system.
Accessing Support from the Journeys Program
If you believe your child could benefit from the comprehensive support offered by the Journeys Program, speaking with your child’s medical provider is the first step. A referral to the Journeys team can be initiated by your medical provider. For further inquiries or to connect with the Journeys team directly, please call 573-771-4266 or email Lacey Prater at [email protected]. The MU Health Systems Journeys Program stands ready to provide compassionate and comprehensive care to children and families throughout their healthcare journey.
