Pediatric Hospice and Palliative Care: A Deep Dive with Dr. Becky McDonald-Yilmaz

Understanding Hospice and Palliative Care

• 💡 Palliative care is a broad area of medicine for individuals with serious illnesses, not necessarily terminal, focusing on comfort and quality of life.
• 🎯 Hospice care is specifically for those approaching the end of life, aiming to maximize comfort and support for as long as possible, rather than aggressive life-prolonging treatments.
• 🔑 A key distinction is that palliative care can be provided alongside curative treatments, while traditional adult hospice often requires foregoing such treatments.

Navigating End-of-Life Conversations

• 💬 Starting conversations about hospice requires building rapport and trust with the patient and family.
• ⚠️ It's crucial to identify what is important to the family and align medical knowledge with their values to explore care options.
• 🗣️ When introducing the term "hospice," it's important to pause and gauge the family's reaction to understand their awareness and potential fears.
• 🤝 The goal is to help families understand options and medical realities, not to direct their decisions, respecting their unique values and goals.

Hospice Eligibility and Pediatric Differences

• 🗓️ Hospice eligibility requires a terminal illness with an expected prognosis of less than 6 months, though patients are not discharged if they outlive this.
• 👶 Concurrent care for children (up to age 21 nationally, potentially older in some states) allows them to continue life-prolonging treatments while receiving hospice support.
• 🏥 This concurrent care model is a significant benefit, enabling children to receive comprehensive support without having to abandon all disease-directed therapies.

Addressing Healthcare Disparities and Diverse Diagnoses

• 📉 Studies indicate lower hospice utilization rates among non-white and Hispanic populations, often correlating with higher rates of intensive hospital care at end of life.
• 💖 Hospice care is appropriate for any patient nearing the end of life, not just those with cancer, including conditions like heart failure, respiratory failure, and neurological diseases.
• 🧩 Navigating situations where providers deem care futile requires emphasizing that hospice is not about giving up but about shifting focus to comfort and quality of life.

Hospice Services and Family Support

• 🤝 Hospice care is a team effort, involving physicians, nurses, social workers, chaplains, and aides, with the family as a core component.
• 🏠 Home hospice provides skilled nursing visits, psychosocial support, and 24/7 phone access for advice and emergencies.
• 🏥 For complex symptom management, inpatient hospice units or hospital-based hospice care are available when home care is insufficient.
• 🚫 Enrolling in hospice does not require a DNR/DNI status; discussions about code status are separate and can occur over time.

Preparing for the Final Stages

• 🗣️ Anticipatory guidance is key, educating families about expected changes like increased sleep, decreased eating/drinking, and potential confusion or delirium.
• 💧 It's vital to explain that reduced intake is a natural part of the dying process, not a failure of care, and that forcing food or fluids can be harmful.
• 🩹 Pain management plans can be adjusted, potentially moving from PRN to scheduled around-the-clock medication to ensure comfort.
• 🧒 When discussing death with children, open-ended questions and allowing them to lead the conversation are crucial, respecting their pace and understanding.

Key Takeaways for Providers

• 🌟 Be aware of concurrent care for pediatric patients, allowing continued disease-directed treatments alongside hospice support.
• 🚀 Emphasize early involvement of palliative care and hospice to build relationships and provide comprehensive support.
• ❓ Debunk hospice myths: you don't have to die within 6 months, and DNR/DNI is not a prerequisite for enrollment.