Primary Intensivist & Family Partnership: Advocating for Long Stay Patients in the ICU
Jul 10, 2023
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Megan & Ross Maenius, parents of a child with chronic medical complexity, share their journey in the ICU. Dr. Erin Gordon discusses the importance of a 'primary' intensivist in pediatric care, improving communication, and supporting families. Topics include parental consequences, challenges in NICU, advocating for families, emotional reflections on loss, and nurturing connections in the ICU.
Having a primary intensivist who advocates for the family positively influences care and decision-making.
Consistent communication within medical teams and involving parents in rounds are crucial for managing long ICU stays.
Open and sensitive communication, along with personalized care, are essential in end-of-life discussions and decision-making.
Deep dives
The Impact of a Primary Intensivist on Patient Care
Having a primary intensivist like Dr. Gordon proved invaluable for Megan and Ross during their daughter Mila's struggles with multiple health issues. Dr. Gordon's consistent advocacy, communication skills, and ability to involve the parents in decision-making extended Mila's life significantly. From recognizing the severity of Mila's heart conditions to ensuring personalized care plans, Dr. Gordon's presence provided guidance and support that positively influenced how the parents navigated the complexities of Mila's medical journey.
Importance of Consistency and Communication in Medical Care
Consistency and effective communication within the medical team and with the parents emerged as critical factors in providing optimal care. Megan and Ross highlighted the significance of having a primary intensivist who not only understood the medical complexities but also advocated for the family's well-being. The need for clear handover processes, doctor-patient communication, and involving parents in rounds underscored the importance of a structured approach in managing long-term ICU stays and complex medical conditions.
Challenges and Lessons in Medical Decision-Making and End-of-Life Care
Navigating the challenges of medical decision-making, particularly concerning end-of-life discussions and care, revealed both the vital role of open communication and the impact of different personalities in the medical team on the parents' experience. Megan and Ross shared insights on the importance of parent education, effective physician handovers, and the emotional support provided by medical professionals during difficult times. The vulnerability and complexity of end-of-life conversations underscored the need for sensitivity, clear communication, and personalized care for families facing such circumstances.
Advocacy and empathetic patient care
Providing empathetic patient care and advocating for both the patient and their family are crucial aspects of the primary intensivist role. Building strong relationships with families can lead to deep connections that provide professional and personal fulfillment. Advocating for patients includes encouraging families to take advantage of available resources and ensuring they receive mental support during their challenging hospital stays.
Supportive environment and parental mental health
Creating a supportive environment for families in the NICU involves offering mental health support and resources. Encouraging parents to access therapy and providing them with tools to cope can greatly benefit their mental health during stressful hospital stays. Introducing initiatives like NICU donation drives and incorporating routine activities like baby massages and walks can also contribute to the overall well-being of both families and patients.
Megan & Ross Maenius are parents to Mila and patient advocates at Children's Medical Center Dallas. They have an incredible story to tell about their child's journey that may help the next time you are caring for a patient with chronic medical complexity in the pediatric ICU.
Erin Gordon, D.O. is an Associate Professor of Pediatrics at University of Texas Southwestern and an intensivist in the pediatric cardiac intensive care unit. Dr. Gordon is the medical director of the inpatient developmental care program and directly involved in creating an environment that fosters the growth and development of the congenital heart disease population, including parental mental health and resilience. Her passion for patient and family advocacy has led to her desire to bring a louder voice to the concept of a “primary” intensivist.
Learning objectives:
After listening to this episode, learners should be able to:
Recognize the parental consequences of children with complex chronic conditions and those requiring a prolonged ICU stay.
Recognize aspects of ICU care that limit effective communication between parents/caregivers and clinicians.
Discuss strategies to improve communication between parents/caregivers and clinicians including the role of a primary intensivist program.
Discuss ways that parents/caregivers and clinicians can partner together to improve the care provided to children in the ICU.
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Thank you for listening to this episode of PedsCrit. Please remember that all content during this episode is intended for educational and entertainment purposes only. It should not be used as medical advice. The views expressed during this episode by hosts and our guests are their own and do not reflect the official position of their institutions. If you have any comments, suggestions, or feedback-you can email us at pedscritpodcast@gmail.com. Check out http://www.pedscrit.comfor detailed show notes. And visit @critpeds on twitter and @pedscrit on instagram for real time show updates.
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