The MU Journeys – Pediatric Complex Care Team is dedicated to providing holistic support for children and their families as they navigate the complexities of serious and life-threatening medical conditions. Understanding the multifaceted challenges these families face, the Journeys Program offers a comprehensive approach that addresses physical, social, emotional, and spiritual needs. A core element of this support is palliative care, aimed at enhancing the quality of life for both the child and their loved ones.
The MU Journeys Pediatric Complex Care Team, offering comprehensive palliative care support for children and families.
This specialized support from the Journeys team encompasses several key areas designed to ease the burdens and improve the well-being of families facing challenging medical journeys. These services are integral to the palliative care philosophy of the program and are tailored to meet the unique needs of each child and family.
How the Journeys Program Delivers Palliative Care
The Journeys Program’s approach to palliative care is centered around providing comprehensive and compassionate support. Here are the core services that illustrate how the program embodies palliative care principles:
Symptom Management: A cornerstone of palliative care is effective symptom management. The Journeys team is skilled in treating a wide range of distressing symptoms that children with complex conditions may experience. This includes pain management, addressing shortness of breath, combating fatigue, alleviating constipation and nausea, stimulating appetite, and resolving sleep difficulties. By proactively managing these symptoms, the program aims to improve the child’s comfort and overall quality of life.
Care Coordination Expertise: Navigating the healthcare system can be overwhelming, especially when managing complex medical needs. The Journeys Program acts as a central point of contact, expertly coordinating care among the child’s entire medical team. This includes communication and collaboration with primary care physicians, specialists, and community healthcare providers. By streamlining communication and logistics – such as appointment scheduling and insurance navigation – the Journeys team significantly reduces the stress on families, a key aspect of palliative care.
Collaborative Goal Setting: Recognizing that each family’s values and priorities are unique, the Journeys team emphasizes patient-centered goal setting. They take the time to listen attentively to what matters most to the child and their family. This collaborative approach ensures that care plans are aligned with the family’s wishes and goals, empowering them in the decision-making process, which is vital in palliative care.
Proactive Disease Management: While not focused on curative treatment, palliative care plays a crucial role in disease management. The Journeys Program works to help families effectively manage their child’s illness at home, aiming to minimize the need for frequent hospitalizations and emergency room visits. This proactive approach not only improves the child’s well-being but also reduces disruptions to family life.
Advanced Care Planning and Guidance: A sensitive yet essential component of palliative care is planning for the future. The Journeys team provides support and guidance in advance care planning, ensuring that the child’s healthcare wishes are honored. They assist families in creating advanced care plans and offer support for long-term care planning, including the transition to adult care when appropriate. This forward-thinking approach provides peace of mind and ensures that care aligns with the family’s values throughout the child’s journey.
Compassionate Support Beyond Medical Care
Recognizing that palliative care extends beyond physical symptoms, the Journeys Program also offers compassionate support services to address the profound emotional and spiritual impact of child loss on families.
These services include:
Bereavement Resources and Follow-up: The death of a child is an incredibly traumatic experience. The Journeys Program offers crucial educational and supportive resources to parents following a loss. This includes written materials on the grieving process, strategies for managing grief during holidays, guidance on supporting surviving children, and referrals to community resources. The program proactively reaches out to families, understanding that support is needed regardless of where the loss occurred.
Memorial Services: To honor and remember children who are deeply missed, the Journeys Program hosts memorial services. These services, held in April and October, provide a communal space for families and the wider community to grieve and remember together. These events are open to the public and offer solace and support to anyone touched by child loss.
If you believe your child could benefit from the comprehensive palliative care approach of the Journeys Program, please request a consultation from your medical provider. For further inquiries or to speak with a team member, please call 573-771-4266 or email Lacey Prater at [email protected]. The MU Journeys Program is committed to providing compassionate and comprehensive support every step of the way.
