Pediatric Hospice Care: Yes We Can & Why We Should

1. Pediatric Hospice Care: Yes We Can &Why We Should Anne Anderson, BSN, RN Stacey Jones, LICSW, ACHP-SW

2. Learning Objectives • Identify the importance of providing hospice care to all ages in the state of WA including CoN requirements. • Review challenges to providing pediatric hospice care. • Understand differences and similarities in adult and pediatric hospice care. • Know tips, tools and resources available to assist with provision of pediatric hospice care. • Understand the recent changes to the WA State Medicaid regulations regarding provision of pediatric concurrent care and how this will benefit our care of terminally ill children in the state of WA. • Understand the importance of managing stress when caring for terminally ill child.

3. MARI

5. What makes work with terminally ill children who need hospice care scary?

6. Myths and Challenges • I'm not a pediatric nurse/social worker/chaplain/medical director. • Caring for children at EOL is too sad.  • I can work with adults, but not children.  • Am I going to cry? • Will this make me think about my own children and family? • Children’s care needs are so complex, how will I know what to do? • I don’t know how to control symptoms in children.

7. Myths and Challenges • Pediatric hospice care is too expensive. • Families goals don’t seem like hospice goals. • We don’t have anyone to call pediatric consultation. • We don’t have pharmacy services for consultation about medication doses. • We don’t have appropriate pediatric DME and supplies. • We don’t know if this patient really has 6 months or less prognosis.

8. Similarities • Hospice care includes family values, hopes, wishes in end of life planning care. • Comfort and quality of life are the focus. • Communication focuses on what is important to patient and family. • Care embraces whole family. • Caregivers want to feel confident in providing care at home, and appreciate when the hospice team provides clear information. • Patients can be involved in their care and decision making (this depends on their developmental level and parental preferences).

9. Differences • Number of children dying is small compared to adults • Trajectory of illness can be more unpredictable. • Often have dual goals of treatment – hoping for a cure while wanting to keep pain and distressing symptoms managed. • Children are not small adults. • Parents have the final say in decisions. • May be part of a larger community. • Parents and family who are losing a child have different reasons for grieving. • Children often continue to see physicians even while on hospice • Physicians and other providers like to continue to be involved. • Families often very aware of what it means to be on hospice even if don’t want to discuss.

10. What to focus on? Hints for success

11. Hints for Success: Organization • Utilize staff within your organization who have had pediatric training or who have an interest in learning pediatric end of life care. • Recognize the skills your organization already has in end of life care. • Become informed and educated on pediatric hospice care. • Once you have trained staff, prepare others in your organization. • Determine a pediatric manager/supervisor champion.

12. Hints for success: Focus on Child and family • Focus on what is important for child and family. • Focus on entire family and community. • Listening intentionally without hurrying. • Allow child and family to have hope and meaning of hope will change. • Prepare child and family for disease progression. • Be there for child and family as situation changes and provide education on these changes and ways to manage.

13. Hints for Success: Clinician • Use open and honest dialogue. • Utilize joint visits. • Utilize pediatric providers and resources available. • Be comfortable with not having all boxes checked. • Have cultural curiosity. • Introduce bereavement staff early. • Keep providers updated on patient situations and changes. • Reach out to medical examiner or EMS providers. For hospice symptom management support call: Seattle Children’s PACT (Pediatric Advance Care Team) Attending Page through hospital operator 206 987 2000

14. Management of Stress in Providing Pediatric Hospice Care Stress Strategies Develop good team cohesion and communication. Think about own thoughts and feelings about children dying. Maintain professional boundaries and relationships. Utilize resources when symptoms are unrelieved. Practice self care. Develop strong support system. Acknowledge loss of childthrough ritual. • Team conflict and poor communication. • Relationship developed with child and family. • Inability to relieve symptoms. • Lack of time and space to grieve loss of child.

15. LUCAChanging hope and changing goals

16. LUCA

17. Far and away the best prize that life has to offer is the chance to work hard at work worth doing. --Theodore Roosevelt Next Steps…..

18. Please contact us with questions Anne Anderson anne.anderson@seattlechildrens.org 206-987-5579 Stacey Jones stacey.jones@providence.org 206-320-4000

19. References • Lindley L, Mark B, Lee S Y D, Domino M, Song M K, Vann J J. Factors Associated with the Provision of Hospice Care for Children. Journal of Pain and Symptom Management, 2013 April; 45 (4): 701-711. • Sanchez Varela A M, Deal, A M, Hanson L C, Blatt J, Gold S, Dellon E. Barriers to Hospice for Children as Perceived by Hospice Organizations in North Carolina. American Journal of Hospice and Palliative Care Medicine, 2012; 29 (3): 171-176. • Baranowski, K. Stress in Pediatric Palliative and Hospice Care: Causes, Effects and Coping Strategies, 2006 March. NHPCO website (www.nhpco.org). • Larson, D. Stress management in Pediatric Palliative and Hospice Care, 2006 March. NHPCO website (www.nhpco.org).