Palliative Care

CHOICES A Pediatric Palliative Care Program

Our CHOICES palliative care team consists of a board certified Pediatric Palliative Care Physician and a dedicated pediatric nurse practitioner with extensive palliative care experience as well as availability to access services from child life, social work, spiritual care and other psychosocial supports as needed.

We work with patients and families to establish and support goals of care that fit within each individual family’s value system. Being a support service, we try to minimize additional medical appointments by visiting families in the hospital, in the office (ours or subspecialists), and in the community (including home visits).

Frequently asked questions:

What is Pediatric Palliative Care?
Pediatric palliative care focuses on providing relief of symptoms, pain, and the stress of a chronic life limiting illness. Our goal is to improve the quality of life for children and their families facing chronic, life-long diseases.

How is this different from Hospice/end of life?
Hospice cares for patients who have less than 6 months to live. Patients enrolled in Hospice programs have chosen to allow natural death with little intervention. Although we do provide care at end of life including Hospice, the majority of our patients are alive more than 1 year after being involved in our program. Hospice is the tail end of palliative care and a very small component of the care provided to a patient/family within our program.

When should a patient be referred?
Referral should be made at the time of diagnosis of a life limiting illness. This includes prenatal diagnosis. By establishing a relationship early on in the diagnosis, we are better able to assure the family’s goals of care are supported.

What diseases would be considered appropriate?
◆ Advanced or progressive cancer
◆ Complex and severe congenital or acquired heart disease
◆ Trauma or sudden severe illness
◆ Extreme prematurity
◆ Cystic fibrosis
◆ Severe immunodeficiencies
◆ Chronic or severe respiratory failure
◆ Renal failure
◆ Muscular dystrophy, myopathies, neuropathies
◆ Severe short gut, TPN-dependent
◆ Progressive severe metabolic disorders, (e.g. metachromatic leukodystrophy, Tay-Sachs disease, severe mitochondrial disorders)
◆ Certain chromosomal disorders, (e.g. Trisomy 13 and 18)
◆ Severe osteogenesis imperfecta subtypes
◆ Severe cerebral palsy
◆ Children with multiple congenital anomalies
◆ Multiple disabilities following brain or spinal cord infectious, anoxic or hypoxic insult or injury
◆ Severe brain malformations, (e.g. holoprosencephaly, anencephaly)

Who can refer a patient?
We accept referrals from families, physicians, nurses, and community support systems.

How to contact us?
To set up a new outpatient referral, please call 315-464-5294. Inpatient referrals can be provided by talking to your child’s health care providers.

Contact Information

Upstate Cancer Center Maps and Directions
Address: 750 East Adams Street, Syracuse, NY 13210
Phone: 315 464-5294
Website: CHOICES A Pediatric Palliative Care Program
Insurance Info: Pediatric Service Group, LLP

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