This article originally appeared in Star Chronicle, a newsletter
published for the Children's Medical Center.
A life-limiting illness in a family is difficult for everyone involved, but
when it is a child who has one, the patient and family need support and care to
help them through the challenges. To meet the needs of children and families,
UMass Memorial staff offers two pediatric palliative care programs, one through
the Children's Medical Center and the other through Home Health and Hospice.
Certain barriers in the past have prevented these children from receiving
services that would improve their quality of life. In 2006, a new Massachusetts
law allowed the establishment of 10 pediatric palliative care programs under
hospice funded by the Massachusetts Department of Public Health; one was given
to UMass Memorial Home Health and Hospice.
The program, available to children living in and around Worcester, offers
services to meet the physical, emotional and spiritual needs of children with
life-limiting illnesses and their families. A life-limiting illness is defined
as an illness that can limit normal life expectancy such as advanced or
progressive cancer, cystic fibrosis or major organ failure. Staff visits
patients' homes and provides music and massage therapies, counseling, nursing
care and bereavement support at no charge.
This program provides patients and their loved ones with great family
centered care. Staff works closely with the Children's Medical Center and has
all the resources of the hospital.
The Children's Medical Center is launching its own palliative care program
for children. The committee, chaired by Naheed Usmani, MD, pediatric
hematology/oncology, is working with the Hospice program through a nurse
practitioner liaison for uniformity of care.
According to Dr. Usmani, "Our goal is to provide interdisciplinary care that
relieves suffering and improves quality of life for our patients with advanced
illness and their families." Plans include educational outreach, a palliative
care clinic for outpatient consultations, home visits and a "comfort care room"
providing a home-like atmosphere in an inpatient setting for terminally ill
Children with life-limiting illnesses and their families should have no limit
to resources when it comes to palliative care. UMass Memorial is dedicated to
compassionate care and meeting very special needs of children and their families