What can you expect from the Palliative Care Team?

The focus of the palliative care team is to assist children with life-threatening conditions and their families as they navigate the complicated course of their child’s illness, addressing comfort, quality of life, and family support from a holistic perspective.

The palliative care team can assist families in identifying their goals for their child’s care, setting priorities and examining options. The palliative care team often consists of professionals from a variety of backgrounds that work together to address pain and symptom management issues, comfort and quality of life, coping, resource needs, and strategies for strengthening family relationships. In addition, the palliative care team can assist families and health care professionals in the coordination of care across settings, and over time, as needs change, and as multiple providers seek to work together to ensure the best care for the child and family.

The palliative care team usually works together with the child’s primary physician and other specialists involved to create a plan for care that matches the child’s needs, the family’s priorities, and that also addresses the complexities of the health care system itself in an effort to make care work better from the child and family’s perspective.

Palliative care teams can assist with discussions when difficult decisions must be made, when options are not clear, when there are many complex tasks to attend to, and whenever the primary team requests assistance.

How can I prepare families for pediatric palliative care?

Families tell us that when they hear their child has a serious medical condition from which they might die, they live with that fact from that day forward. While they may focus on being hopeful, seeking cure, or long life, they also realize their child’s condition is life-threatening. Palliative care can meet families at this point of tension: we help families as they strive for the best, but we are also prepared to provide intervention and support in the event the child’s condition declines, or death becomes inevitable.

You can explain to families

• Palliative care is the specialty service that accompanies children and families as they walk this challenging road. Palliative care works together with the child’s primary physician. It is a new and expanding field, specially designed to address the needs of children with complex and life-threatening conditions.
• The focus of palliative care is usually on comfort, quality of life, and holistic support for the child and family over the “up and down” course of the child’s illness or condition.
• The continuum of palliative care services can include support during the adjustment phase after a new diagnosis, assistance with care when changes occur, problem solving assistance when new issues emerge, assistance with decision making, and end of life and bereavement care as needed.
• Palliative care can work in collaboration with other hospital and community services including home based nursing, hospice care, schools and sub-specialty care as indicated by the child’s and family’s circumstances.
• Should their child’s condition improve, and they no longer need palliative care support, they can be discharged.

How can I acquire more knowledge about how to best help families with pediatric palliative care needs?

There are a number of good ways to learn more about how to provide pediatric palliative care.

• Individual study through an on-line curriculum such as those available through NHPCO, IPPC or ELNEC-Peds: see the resources page
• Practicum experiences at a center that specializes in pediatric palliative care, such as one of the Regional Centers.
• Fellowship opportunities exist for physicians, nurse practitioners, and social workers. Contact AAHPM or your Regional Center for more information.
• Identify a Mentor and plan a self-study process.
• Attend meetings that offer content on pediatric palliative care, including AAHPM, NHPCO annual meetings, and the bi-annual International Congress on Palliative Care.
• Attend specialized training programs, including PCEP at Harvard, and the Pain Master Class in Minnesota. (See education and training page)
• Check with schools of medicine, nursing and social work to identify current courses on related topics that might be available.

As the field of pediatric palliative care grows and evolves, additional learning opportunities will no doubt be generated. We will continue to share strategies and resources for training on these pages as they are identified.