16:45 PM

What Is Palliative Care at Cook Children's Medical Center

By Katie Lawrence, CPNP & Kaci Osenga, M.D.

Pediatric Palliative Care (PPC) has been a board certified subspecialty in pediatrics sponsored by the American Board of Pediatrics since 2008. PPC has been a specialty service at Cook Children’s Medical Center (CCMC) since 2007. Palliative care is widely misunderstood by many medical professionals, as well as the general public. While many believe that palliative care is synonymous with end of life care or hospice care, this is not entirely true. Palliative Care is a specialty service that helps care for any child and their family living with serious and potentially life limiting complex chronic conditions. Hospice care is along the continuum of palliative care. All hospice is palliative care, but not all palliative care is hospice. The PC team is grateful to become involved as early as diagnosis and at any time along the disease trajectory including in the midst of therapy with curative intent. The role of the palliative care team is to help with symptom management (caused by disease or treatment), medical decision making and to support families through the uncertainty of serious illness.

The PPC team at CCMC is comprised of physicians, nurse practitioners, nurses, social workers and chaplains. The team collaborates with child life specialists and other supportive services available at the medical center. The PPC team works alongside the child’s medical team to alleviate the suffering of the child and family. We address not only physical suffering (pain, shortness of breath), also psychological (anxiety, depression), social (isolation, financial stress) and spiritual suffering of the child and their family.

We have worked with hundreds of children with serious, complex chronic diseases and assist with anticipatory guidance and medical decision making along the disease trajectory. For example, the family of a child with swallow dysfunction associated with neurologic impairment may be faced with a decision of whether or not to pursue gastrostomy tube placement when aspiration continues despite other means of prevention. The PC team helps to facilitate informed decision making along the disease trajectory in hopes of preventing the need to make critical decisions in times of crisis.

If you have a patient that you feel might benefit from Palliative Care services, you may speak directly to our nurse coordinator, nurse practitioners or physicians to ask questions or make a referral. We can see patients in both the inpatient setting and in our outpatient clinic. PPC does not admit children to the hospital and we do not primarily manage the patients. We work with the primary care providers and the child’s other specialists to ensure that the child is receiving care that is consistent with the family’s goals of care and that we are looking at the whole picture and not just individual systems.

Get to know Cook Children's Palliative Care Program

Cook Children's Palliative Care program focuses on relieving physical, emotional and psychosocial suffering, while enhancing the quality of life for our patients.

Your palliative care team:

  • Facilitates collaboration, coordination and continuity of care.
  • Provides guidance in communicating time-intensive information and difficult conversations.
  • Assists with care conferences and family meetings.
  • Supports children and families who are making difficult treatment decisions.
  • Helps children and families establish goals of care based on their values, beliefs, preferences, framework of meaning, etc.
  • Supports the primary care team with managing distressing symptoms.

Additionally, the Palliative Care team encourages early involvement (i.e., near the time of diagnosis), so that they can begin working in conjunction with a patient's curative and/or life-prolonging treatments.