The Harriet Lane Compassionate Care Program

Providing Interdisciplinary Pediatric Palliative Care in Baltimore

Background & Goal

Pediatric palliative care is an under-funded and often overlooked element of the U.S. health care system. (Palliative care reduces or relieves pain from serious illness regardless of the diagnosis or prognosis. Although it can be part of hospice care, it also can be provided to those with non-terminal conditions – and includes physical, mental, emotional, and spiritual support for the patient and their family. It is provided by an inter-professional team that includes nurses, doctors, social workers, child life specialists, chaplains and other related specialists who collaborate across settings from hospital to home.)

The Harriet Lane Compassionate Care Program mission is to improve the care and comfort for children of all ages with life threatening and life limiting conditions by advancing the art and science of pediatric palliative care. Our vision is comforting children every day.

Center Description

The Harriet Lane Compassionate Care Program (HLCC) is a nurse-directed holistic approach to interdisciplinary, pediatric palliative care at the Johns Hopkins Children’s Center in Baltimore. It provides education, support and renewal with a unique focus on building confidence and competence in interdisciplinary health care professionals. A full spectrum palliative care clinical program, including palliative care consultation, pain and symptom control, psychosocial and spiritual support, advance care planning and bereavement counseling has been developed. The program coordinators develop innovative, experiential education and support systems, including regular debriefings with professionals after patient deaths. The program also includes a 50-member interdisciplinary network and an interdisciplinary leadership Committee.

Evidence of Success

• One of the first pediatric palliative care programs in the country and uniquely co-led by a doctorally-prepared nurse.
• The team leads weekly inter-professional care planning rounds that include interdisciplinary representatives from inpatient units, Pediatrics at Home and local hospices to discuss challenging cases. Other changes from conventional care include weekly goals of care.
• Conferences in pediatric and neonatal intensive care, a peri-natal consultation pilot program.
• Our pilot palliative care consultation program serves 40-50 patients per year whose care exceeds the capacities of their primary clinical team.
• We developed a comprehensive bereavement program for families while providing support to the inter-professional clinical teams.
• Staff debriefings are offered after each patient death; formal debriefing sessions are provided 2-3 times a month.
• The bereavement program serves more than 250 families each year. Examples of the services provided include: support groups for siblings as well as parents and grandparents, annual retreats for families, referrals and resource provision, including funeral assistance, and follow-up for families for two years after a child dies. Annual tribute and memorial services for families and health care team members honor patients who have died. 
• HLCC leaders have developed and disseminated national and international clinical quality standards and inter-professional, patient and family centered curricula in pediatric palliative care.
• System-wide palliative care education is integrated into clinician orientation, continuing education and annual inter-professional 1-day conference.
• HLCC has provided leadership in state-wide policy initiatives to address gaps in pediatric palliative care services