What services does the palliative care team provide?

Our goal is to provide support and enhance the quality of life of the child and family. To do these things, we work with the child, family and primary care team by: 

• Treating a child’s pain or other symptoms, such as nausea or constipation
• Helping families in identifying goals and priorities, and helping with decision-making
• Giving emotional, social, educational and psychosocial support
• Helping families figure out end-of-life-choices if a child’s diagnosis is considered terminal
• Helping organize home care and/or hospice care, if needed
• Enhancing teamwork and communication

How do I know when to consider palliative care?

Families should talk to someone about palliative care for infants and children who are not expected to live to be an adult. Examples include: 

Conditions with treatments that may fail

• Children who become sick with a serious and often fatal disease. The disease is expected to get worse and cause acute episodes. Examples include malignant neoplasms, acquired renal failure or lupus erythematosus.
• Children living with chronic and life-limiting injuries from accidents or trauma
• Children with life-threatening illnesses (such as severe trauma, leukemia or acute stroke).  A cure may be possible, but their quality of life is poor.
• Advanced or progressive cancer
• Bone marrow transplant
• Heart transplant symptom management
• Complex and severe heart disease (congenital or acquired)
• Organ failure after transplantation

Conditions with long treatments where recovery isn't always expected

• Seriously and terminally ill children (those with terminal cancer, for example). They are unlikely to recover and palliative care is the goal of care for the rest of their lives. 
• Children with an illness that is chronic and gets worse (such as peripheral vascular disease, malignancies, chronic renal or liver failure, stroke with significant functional impairment, advanced heart or lung disease, frailty and neurodegenerative disorders).
• Children born with a congenital malformation, chromosomal abnormality or prematurity. Doctors expect that their health will decline from birth until death occurs during the first weeks or months of life.
• Chronic or severe respiratory failure
• Muscular dystrophy

Progressive conditions where treatment is only palliative care that may last many years

• Children born with a genetic or metabolic disorder that leads to a slow but steady decline in health. Examples include some muscular dystrophies, cystic fibrosis and spinal muscle atrophies.
• Children with congenital injuries or conditions that depend on life-sustaining treatments or long-term care. Support for daily activities is needed.
• Mucopolysaccharidoses or other storage disorders
• Progressive metabolic disorders
• Certain chromosomal abnormalities

Conditions with severe disability, often neurological, which cause extreme vulnerability to health complications. Premature death may be expected

• Extreme prematurity
• Severe neurologic sequelae of infectious disease
• Hypoxic or anoxic brain injury
• Holoprosencephaly or other severe brain malformations
• Cerebral palsy with recurrent infection or difficult symptoms