1. 2014 PPE Disclosure Statement It is the policy of the Oregon Hospice Association to insure balance, independence, objectivity, and scientific rigor in all its educational programs. All faculty participating in any Oregon Hospice Association program is expected to disclose to the program audience any real or apparent affiliation(s) that may have a direct bearing on the subject matter of the continuing education program. This pertains to relationships with pharmaceutical companies, biomedical device manufacturers, or other corporations whose products or services are related to the subject matter of the presentation topic. The intent of this policy is not to prevent a speaker from making a presentation. It is merely intended that any relationships should be identified openly so that the listeners may form their own judgments about the presentation with the full disclosure of the facts. This presenter has no significant relationships with companies relevant to this presentation to disclose. 1

2. Kathy Perko, MS, PNP, CHPPN Program Director: Bridges Palliative Care Doernbecher Children’s Hospital Monica Holland, BSN, CHPPN Doernbecher/Bridges Palliative Care And Willamette Valley Hospice You Can Do It! Caring for Pediatric Patients in an Adult Hospice

3. Hospice Care Similarities Differences Focus on QOL, minimizing suffering, and maximizing function Management by IDT Can be delivered concurrently with aggressive treatments Pain and symptom management Age range broad Technology support Timing Setting of care Payment Availability of services

4. Who are these kids? Curative treatment is possible but may fail Early death is inevitable, but with long periods of treatment aimed at prolonging life and maintaining quality of life Treatment is exclusively palliative after diagnosis Severe, non-progressive but irreversible disability, with frequent complications and premature death

5. Technology support Trach + Vent Feeding tubes and pumps Oxygen/Suction IV fluids/meds/TPN

6. Medical Technology Medical technology # % None10520.4 Any feeding tubes30759.6 Gastrostomy tube25048.5 Nastogastric tube519.9 Jejunostomy tube509.7 Central venous catheter11522.3 Tracheostomy5210.1 Noninvasive ventilation499.5 Ventilator-dependent448.5 Wheelchair214.1 VP/VJ shunt152.9 Feudtner et al, 2011

7. Timing – Admission Pediatric diseases often difficult to prognosticate 6 month life expectancy rule or guideline? Children are very resilient and often live longer than expected Referral seen as giving up hope?

8. Payment Medicare versus Medicaid Private insurers Concurrent Care Act

9. Challenges Willingness Expertise Support

10. General principles of pain in children Pain management impeded by misconceptions about assessing symptoms in children (Hutton et al., 2008) Children, including neonates, feel pain and experience increased morbidity and mortality when inadequate analgesia is provided (Hutton et al., 2008) 10

11. General principles of pain in children (con’t) Assessment of pain must be tailored to child’s developmental stage Gold standard of pain measurement is patient self-report, no matter if patient is adult or child Important to use child’s own words for pain (e.g., “hurt,” “boo-boo,” “ouchie”) 11 (Friebert et al., 2012)

12. General principles of pain in children (con’t) Physiological indicators (e.g., changes in pulse or BP) may not be reliable indicators of pain in chronically ill children Behavioral indicators (e.g., facial grimacing, crying) may be unreliable or absent Children may use sleep or play as coping mechanisms 12 (Friebert et al., 2012)

13. 13 Assessment Behavioral assessment Assessment tools Same scale-ask child/parents Involve family Never dismiss a child’s report of pain based on observed behavior Physiologic assessment Proxy report (ELNEC, 2012)

14. Pharmacologic Management Many similar indications and medication Steroids, haldol, patches Review dosages Get out the calculator Check decimal points Double check with colleague Engage with parents What has worked in the past… What does s/he not tolerate

15. Non-Pharmacological Pain Management Used in conjunction with pharmacologic therapies Examples: – Massage – Physical therapy – Acupuncture – Use of hot and cold compress – Behavioral and cognitive techniques (distraction, play therapy, breathing exercises, and guided imagery) (Michelson & Steinhorn, 2007) Parent/caregiver presence important (Papadatou et al., 2003) 15 (Friebert et al., 2012)

16. Challenges in symptom assessment Pre or non-verbal children – how to assess? Parental issues Developmental aspects Infant/ toddler Pre-schoolers School age Adolescent

17. Pearls-Medication Administration Oral – may not be preferred in young children mix with maple syrup, ice cream, snow cone flavorings, apple sauce Avoid using favorite food/flavoring Parenteral – consider age for PCA Avoid intramuscular 17 (Friebert et al., 2012)

18. Pearls-Medication Administration Rectal – often disliked by children but can be useful if PO not an option, especially at end of life Transdermal More than fentanyl Children may take longer to reach steady state Placement Younger children may require higher mcg-per-kg doses than older children and adults Lowest-dose fentanyl patches may be too potent for some children

19. Pearls-Medication Administration Combination products Can be DANGEROUS in pediatrics as can easily become tylenol toxic Long acting oxycodone or morphine often have too high of dosage for smaller patients Methadone can be used

20. Non-Pharmacologic Symptom Management Small fan Position changes Cool cloths Distraction Hypnosis Energy conservation Counseling Calm environment Spiritual support 20 (ELNEC, 2012; Friebert et al., 2012)

21. Non-Pharmacologic Management Infants Reduce number of painful events Modify environment: minimizing light, sound levels and temperature; schedule times for low lights/noise. Minimize sleep interruptions. Offer pacifier. Give 0.5-2 ml 24% sucrose solution orally 2 min before minor painful procedures. Swaddling

22. Grief and Loss Parents Siblings Neo-natal loss Grandparents Community

23. New Focus in Grief Theories Challenge to assumptions in mainstream models of grief Shift from severing to maintaining bonds Expand focus on cognition and meaning-making in addition to emotion Challenges concept of an endpoint in grieving

24. Parental Grief Unique relationship -Biological and emotional bonds precede birth “Unexpected” in modern Western society Loss of part of self Loss of hopes and dreams Loss of identities

25. There Are No Words… A child’s death is so challenging for us as a society that we do not have words analogous to “widow” or “orphan” to designate parents who survive a child’s death Friebert, et al., 2012

26. Sibling Grief Loss of sibling Loss of family unit Loss of parents to grief process Lifelong loss “Re-grieving” developmentally

27. Sibling Grief (cont.) Children often perceived as unable to grieve May feel they caused the death Interventions for siblings Validation of sibling grief

28. Perinatal and Neonatal Loss Medical considerations Psychological and social considerations Disenfranchised grief Siblings Subsequent pregnancies Multiples

29. Grandparents Two-fold grief Societal changes

30. Grief/Loss Care does not end with the death Loss, grief and bereavement need to be assessed with ongoing intervention Provide interdisciplinary care Support each other

31. Communication Challenges Progressive disease Acute deterioration End of life Family dynamics Adolescents Disagreement among health care team Faith/spiritual traditions Language and cultural barriers

32. Clinician Anxiety and Dread Clinicians report anxiety and dread when discussing serious diagnoses, impending death, and death Anxiety and dread can compromise communication and intervention Hilden et al, 2001 Ahrens and Hart, 1997

33. Preparation Rehearse what to say and how to say it Consider the setting Consider culture and language Use of medical interpreters vs. family members Visualize how the conversation might go

34. Delivery Recap the current clinical situatio n Tell me how you think Billy is doing today What do you understand about… Fire a “warning shot” Phrase that alerts family that news is not good “Bad news” vs “new information” Use simple and plain language Usually a sentence or two at most

35. Delivery Allow silence Shows respect and empathy Acknowledge your own emotions “I wish…” and “I am worried…” statements Provide honest answers

36. Follow-up Provide clear information on what the next step in care might be Reframe the situation to make sure that they understand Take care of yourself Delivering/being present for bad news is very stressful Acknowledge your own emotions Consider a time out for a minute or two

37. Collaboration YOU (hospice team) are the experts in hospice care PARENTS are the experts in their children Palliative care teams are the experts in bringing the two together with support and expertise

38. Collaboration Develop relationships Identify communication strategies With hospice team With family Share strengths and weaknesses Hospice and pediatric referral source

39. Pediatric palliative care … Is relationship-centered: a partnership between the child, family and health care team Provides a framework for supporting the child and family’s strengths and ability to cope Solicits the family’s values to guide care Acknowledges and respects the expertise of the parents and considers them an integral part of the care ceam

40. In conclusion… YOU CAN DO THIS!!! Children, adolescents and young adults need access to the same high quality palliative and end of life care as adults Be an advocate for the children in your area Encourage a dialogue within your hospice team to expand your pediatric outreach Reach out to the pediatric experts in your geographic area to collaborate with you Find the right model that works for your team and your demographics Consider the unreached…schools, churches, social groups Phone a friend!