Pediatric Palliative Care: Sharing Expertise:

1. Pediatric Palliative Care: Sharing Expertise: Lynn Grandmaison Dumond, RN(EC), MScN, APN Marion Rattray, RN, BN, Manager

2. Objectives • Review the principles of pediatric palliative care • Highlight the services offered by the CHEO Palliative Care Outreach Team • Elaborate on approaches to teaching end-of life issues • Present and discuss current information of Pediatric Palliative Care

3. Guiding Principles of Pediatric Palliative Care • Care centered on the child and his/her family • Great importance placed on • the therapeutic relationship • continuity of care • Communication • Accessibility • Ethical considerations

4. What is Pediatric Palliative Care? • Is an active, total approach, embracing physical, emotional, social and spiritual elements • Focuses on the quality of life for the child/youth and support for the family • Includes the management of distressing symptoms, the provision of respite and follow through of illness, death and bereavement. • Provided when curative treatment is not, or is no longer feasible - may run parallel to active treatment • Palliative treatment may extend over many years

5. Why Different from Adults? • Children are not little adults; there is a developmental component to the care • Children are often born with life threatening conditions; may be on palliative care for their entire lives • In contrast to adult palliative care, most children receiving palliative care do not have cancer • The approach must be tailored to children, family and their special needs

6. CHEO’s Outreach Palliative Care Program Goals • Support of child, family and care team • Advocate and Empower • Collaborate, Communicate, Coordinate • Provide Consistency and continuity • Provide Expertise • Educate, Participate in Research and Develop programming

7. CHEO’s Outreach Palliative Care Program Services • In house consultation and follow up • Outreach • Education, debriefing and support to professionals • Pain and symptom management • Bereavement support • Assistance with ethical decision making

8. Clinical Settings… • Hospital/Institutional care • CHEO and other regional referral centers • Community care • Roger’s House • In-home acute palliative care and surveillance

9. Roger’s House is… • An 8 bed hospice for children • An integral part of CHEO’s Pediatric Palliative Care Outreach Program • A place where children and youth with progressive, life limiting illnesses are welcomed with their family and friends • An environment where efforts are made to enhances quality of life of the child and support his/her family

10. Services offered at Roger’s House • Temporary respite (planned and emergency) • Acute pain and distressing symptom management • Holistic “end of life” care • Temporary “transition to home” care • Grief and bereavement care

11. Barriers to Palliative Care • The death of a child is inconceivable • Terminology causes anxiety • Topic is difficult to discuss • Lack of knowledge • late consultation • Dichotomy b/w healing and death: success v/s total failure

12. … • Uncertain prognosis • Family unwilling to accept the palliative nature of illness • Language barriers and cultural differences • Time constraints, lack of human resources • Search for curative treatments • Lack of services in palliative care

13. … • Lack of knowledge/discomfort with end of life care and treatments • Conflicts regarding goals of treatment • b/w family members • b/w family members and team members • b/w team members

14. Important Principles • Palliative Care does not hasten death and is not euthanasia • Principles of palliative care can and should be integrated to acute and intensive care • Care of the caregiver is extremely important (family and professionals) • Complementary approach and services

15. And… • Most effective when offered by an interdisciplinary team • Offered in the environment chosen by child and family

16. One Case at a Time • Consists of: • Early consultation if possible • Complete case review • Therapeutic relationship set up • Interdisciplinary intervention • Implementation and frequent review of palliative plan of care

17. One Family & Child at a Time • Consists of: • Flexible approach • Open, honest, active approach • Compassion and comprehension • Respect of values, culture, spirituality • Set up a community network • Support in times of decision making • Services offered conjointly

18. One Professional at a Time • Consists of: • Collaborative approach • Sensitize/mentor • Support and care of the professional caregiver • Elaborate the specialty • Integration of services • Respect of professionals beliefs, values…

19. Outcomes! • Collaboration • Sensitization, ease of discussion, planning • Respect, support and validation • Positive memories and feelings • Improved family coping • Subject less “taboo”

20. Resources for Pediatric Palliative Care • CHEO Palliative Care Team • Canadian Hospice Palliative Care Association (CHPCA) • Hospice Association of Ontario (HAO) • CPHPC Canadian Pediatric • Initiative for Pediatric Palliative Care (IPPC) • PedPallNet • End of Life Network Education Consortium (ELNEC) • Canadian Network of Palliative Care for Children