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Pediatric Palliative Care Program

Effective July 1, 2013, Notre Dame Hospice will enter into its second year as a provider for The Pediatric Palliative Care Network (PPCN). Funded by the Massachusetts Department of Public Health, this program is available to all children in families in Massachusetts. Notre Dame serves children and families in Central Massachusetts. The PPCN Program enhances existing services to meet the needs of eligible children with any diagnosis of a life-limiting illness, even when a cure remains a possibility.

Who is eligible?

  • A child under the age of 19 who a physician determines has a potentially life-limiting illness
  • All life-limiting diagnoses are included. Typical illnesses include major organ failure, advanced or progressive cancer, HIV, cystic fibrosis, progressive genetic, neurological or metabolic disorders, renal failure, or severe cerebral palsy and prenatal catastrophic genetic illnesses
  • There are no restrictions as to the life expectancy of the child and children in the PPCN program may continue to receive care directed at cure. Admission to PPCN does not exclude the child and family from treatment choices or supportive therapies.
  • Children are admitted to the program without regard for diagnosis, gender, race, creed, age or ability to pay.

Why is Notre Dame, an institution who has historically cared for the elderly, adding a program for children?

  • It is consistent with our mission to serve the ethnically diverse and financially vulnerable.
  • This population is severely underserved particularly in the Central Massachusetts.
  • It is a unique opportunity for Notre Dame to expand its mission into the community we serve
  • The existing hospice team has the skills, expertise and leadership to serve the pediatric population
  • Diversification in the hospice/palliative care area helps to ensure long term success of the existing business model. The existing pilot will be revenue neutral, but has the potential to be a long term revenue generator as the state determines the long term reimbursement structure for such a program
  • Existing PPCN providers have had the benefit of increased adult community referrals because of the publicity of the pediatric program. Community growth of the hospice program is a high priority in our strategic plan

How does the PPCN Program differ from hospice?

  • The PPCN provider acts as the coordinator of care and helps children and families to access existing resources. Most of these families have visiting nurses and a full cadre of services in place.
  • The doctor does not need to state that the child will live six months or less. In fact, many children diagnosed with life-limiting illnesses live a long time.
  • The PPCN Program supports the child and family with services aimed to improve quality of life by meeting the physical, emotional and spiritual needs experienced during the course of illness, death and bereavement. The services strengthen the family by lessening the anxiety and fear that family members often feel during the course of the illness.

What services will Notre Dame provide?

  • Psychosocial Assessment and case management
  • Spiritual care and counseling for the patient and other family members
  • Volunteer support
  • Pain and symptom management
  • Respite care
  • Complimentary therapies
  • Emergency services
  • Bereavement care for family members in the event of death

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