1. Differences in Pediatric and Adult Hospice Care Kimberly M. Battle-Miller, MD Palliative Medicine Consultant ComfortLink, Ltd.

2. The Patient Legal competence  Patient vs. parent Decision-making capacity  Development vs. cognitive clarity Information sharing (how much, how little)  Diagnosis, prognosis, treatment  Hope Treatment plan development Parents final arbiters

3. ComfortLink, Ltd. The Patient Concept of Life and Death  Developmental stage (not age)  Cultural  Duration/complexity of Illness Quality of Life  Need to be a child Play, School, Peer interaction

4. ComfortLink, Ltd. The Patient (Development) 0 – 2 years  No concept of illness or death  Aware of caregivers tension  Comforted through sensory (holding, singing, sucking)  Familiar people, objects and routines 2 – 6 years  Magical thinking  See death as reversible  Dispel misconception about death as punishment for bad thoughts or actions  Provide concrete answers  Offer limited choices  Minimize separation from caregiver  Familiar people, objects and routines  Arrange playtime and developmental activities (i.e. school) UNIPAC Eight,2003 - modified

5. ComfortLink, Ltd. The Patient (Development) 7 – 12 years  Understand death is irreversible, but unpredictable  May request details about disease, death, burial  Fear abandonment, body changes, being different from peers  Give honest, concrete answers  Offer choices (promotes since of control)  Reassure that illness or treatment is not punishment  Maintain assess to peers > 12 years  Understand finality and universality of death  May want to speak about unrealized plans/future/causes of…  May express anger  Remember to provide privacy  Respect wishes regarding treatment  Support reasonable attempts at achieving independence  Maintain assess to peers  May benefit from peer support groups UNIPAC Eight,2003 - modified

6. ComfortLink, Ltd. The Family Cycle of Life  Parents should not bury their children  Children don’t die How much is too much? “Do everything possible.” Grief/Losses  Expectation of having a “normal” baby/child  Loss of child’s future  Grandparent grieve for their grandchild and inability to prevent their child’s anguish

7. ComfortLink, Ltd. The Family Sibling Struggles  How much do we tell them?  Isolation  Guilt/Anger  “Am I an only child now?”

8. ComfortLink, Ltd. The Care Providers Children Do Not Die! Lack of experience with dying children  Number of child deaths vs. adults  Most children die in PICU Lack of knowledge regarding developmental stages Lack of knowledge regarding rare childhood diseases Fear of using opioids in children

9. ComfortLink, Ltd. Society Lack of organized care for dying children  Hospice, respite, home health nursing  Cost of care Lack of facilities providing in-patient hospice care  Staff skill/knowledge/fear  Cost of care Limited reimbursement  Insurance and Medicaid Lack of research, “evidence based medicine

10. ComfortLink, Ltd. Spirituality Children should not die/suffer  What kind of God would allow…? Finding meaning in child’s life/death  “Well, he/she lived a long life” – NOT  Life review Preserving memories

11. ComfortLink, Ltd. Medical Management Prognosis  More difficult to ascertain, even in kids with cancer  Healthier organs vs. multiorgan system involvement  Relapse-recovery vs. progressive deterioration  Signs of impending death less visible Children often alert, ambulatory and playing hours to days before death Adults often debilitated/bedridden and unresponsive days before death

12. ComfortLink, Ltd. Medical Management Palliation more high-tech (i.e. expensive)  Blood product transfusion  Surgery VP shunts Laproscopic Nissen fundoplication  Hyperalimentation/TPN  Chemotherapy  Monitors Pulse oximetry

13. ComfortLink, Ltd. Medical Management Assessment of pain is more difficult  Varying developmental stages/ability Selecting inappropriate assessment tool  Many patients are nonverbal  Often depend on care givers report vs. self reports Parents fear of addiction, medication side effect and death from medication leads to under reporting  Playing and watching TV may mask pain  Children afraid that reporting pain will result in painful treatment (needles)

14. ComfortLink, Ltd. Medical Management Myth that children do not experience pain like adults, especially infants Myth that children experience more adverse affects from pain medications  respiratory depression/apnea  addiction Lack of research (evidence based therapies) in pediatric population Lack of FDA approval for many medication

15. ComfortLink, Ltd. The Interdisciplinary Team Pediatric Palliative Physician Pediatrician/Primary Physician Pediatric Palliative Nurse Parents (Grandparents) Child (Patient) Pediatric Social Worker Childlife Specialist Music Therapist Child Psychologist/Psychiatrist Chaplain Pediatric PharmD Pediatric OT/PT/Speech therapist

16. ComfortLink, Ltd. Pediatric Case 3 y/o with HIV and end-stage liver disease, DNR/DNI code status PMH: recurrent GI bleeds, recurrent vomiting, FTT, speech delay, pneumonia, pain (resolved) PSH: gastrostomy tube (G-tube) Social Hx:  Lived at Children’s Place (since 7 mo due to FTT and respite for mom)  DCSF custody (since 12 mo due to missed MD visit, unstable housing)  Mom, dad and grandmother visits

17. ComfortLink, Ltd. Pediatric Case Medications Topical thrombin DDAVP nasal Vitamine K Amicare Ursodid Drisdol Naltrexone Reglan Ranitidine NaCL Vitamin E Vitamin C Poly-vi-sol Ferinsol Roxanol prn Motrin prn Tylenol prn Pedicare prn Bactroban cream Zinc oxide

18. ComfortLink, Ltd. Pediatric Case Other treatments:  G-tube feeds  Blood transfusions, prn Based on blood loss, clinical finding and functional status/condition prior to bleed  Speech and occupational therapy Learning sign language and improve speech  Day care, later preschool Socialization, education, development

19. ComfortLink, Ltd. Pediatric Case Hospice Course  Admitted at 2 years old  Died at 3 years 5 month old  Very protracted course Interactive, smiling and playing G-Tube feeds to maintain health and growth Interrupted by bouts of severe nosebleeds  Attempted to control with medication at Children’s Place  Required hospitalization at times for transfusions and stabilization  Sudden death related to sever nose bleed Child interactive, playful until shortly before death

20. ComfortLink, Ltd. Pediatric Case Hospice Support at Children’s Place  Physician visit prn  RN visits weekly  CNA visits 2-4 times/week  Social service visits prn  Volunteer visits weekly  Bereavement support to mom and Children’s Place staff

21. ComfortLink, Ltd. Pediatric Case Legal competence  Parent (HIV+, noncompliant with pt. Care)  DCSF (social issues) Developmental Stage  Need for structure and familiarity  Need to communicate (pt. speech delayed) Concept of Death  None  ?Spirituality Quality of Life  School, playing  Transfusions Medical Care  Unpredictable bleeds  Artifical feeds (G-tube) Nutrition/health vs. prolonging life  Blood transfusion Comfort/quality of life vs. prolonging life  Extensive Medication List Bereavement  Family Guilt of transmitting disease Guilt of placing child in institution (abandonment)  Children’s Place Staff