Neuropalliative Care

Neuropalliative care supports kids who have serious medical conditions. Care can include helping families to define goals and make treatment decisions for kids.

Palliative medicine, by definition, describes medical care focused on providing relief from symptoms, discomfort, or stress caused by a serious illness. Traditionally, this has meant supporting children who have cancer. But it’s also been estimated that, of the children who could benefit from palliative care services in the U.S., nearly half are living with neurological, degenerative, or genetic conditions.

Neuropalliative care is designed to meet the ongoing needs of children who have long-term neurodevelopmental impairments such as cerebral palsy, muscular dystrophy, spinal muscular atrophy and spina bifida. Neuropalliative care doesn’t mean end-of-life care or hospice care—it’s ultimately about maximizing a child’s enjoyment of life and making the most of time spent with family.

A neuropalliative care consultation can be useful for a child or teen who:

• Experiences distressing physical symptoms, including recurring pain, respiratory distress or feeding difficulties.
• Has new or chronic health concerns that require long-term management.
• Shows symptoms of declining health.
• Will likely face major care decisions in the months or years ahead.
• Has been in the hospital for an extended period without clear goals for discharge.
• Experiences multiple hospitalizations within six months.
• Is living with, or has recently been diagnosed with, a life-limiting condition.
• Has concerns related to physical, spiritual or emotional needs.

Palliative treatment can also help families develop strategies for addressing medical crises, illnesses and interventions.

When you work with the palliative care team at Gillette Children’s Specialty Healthcare, we consider your child’s physical, emotional, social and spiritual needs for a comprehensive treatment plan to help them enjoy life despite having life-limiting conditions.