A child rests their head on their mother's shoulder; the mother looks down at the child and smiles

Understanding Pediatric Hospice

A parent’s emotions when they first meet their newborn child and experience the joy of watching them grow up are indescribable. Finding out your child is terminally ill amidst your dreams for their future can be a nightmare. Determining what type of care comes next can be overwhelming.

Parents of children with an illness often feel overwhelmed and overburdened with information. People throw around terms like “hospice” without defining them, making it difficult to absorb what it means. We want to make it a bit easier for you by explaining what pediatric hospice care is so you can understand what this kind of care includes and how it may benefit you and your child.

Pediatric Hospice Care focuses on improving the quality of life for terminally ill children. It prevents, identifies and treats suffering in these children, their families, and the teams that care for them. It also provides an extra layer of psychosocial support.

Historically, hospice care was only available to patients after they stopped curative treatment for their advanced disease or condition. Because of this requirement, many parents never considered hospice care for their children since they never wanted to give up hope of finding a cure. This meant the most vulnerable of patients and their families were missing out on the valuable supportive services offered by hospice. That’s why MJHS advocated with the state of New York to allow children seeking curative treatment and receive the invaluable support hospice care provides the whole family. And we succeeded.

Does Medicaid Cover Pediatric Hospice Care?

Section 2302 of the Affordable Care Act allows terminally ill children currently enrolled in Medicaid to receive concurrent care for their condition. That means they can receive both curative treatments for their condition and hospice care services simultaneously.

What If We Don’t Have Medicaid?

Many private insurance companies have provisions similar to the Affordable Care Act. Many hospice care providers work with insurance companies to explore a plan to allow for hospice care to be involved in your child’s care while also allowing parents to seek disease-directed care for their children that they deem appropriate.

Need More Help?

Parents facing this challenge need a trustworthy resource they can turn to for answers. The expert team of clinicians at MJHS Health System understands the pain and fear you face while caring for your terminally ill child. If you have questions or are looking for pediatric hospice care centered around compassion, dignity, and respect, look no further than the team at MJHS. We are here for you every step of the way.

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