Pediatric Palliative Care: Where have we been and where are we going?

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1 nd-of-ife ursing ducation onsortium : Where have we been and where are we going? Betty Ferrell, PhD, FAA, FP, HP Professor & Research Scientist ity of Hope, Duarte A

2 hild's Play

3 Death of hildren n Annual Deaths per year in the US " 53,000 - less than 19 yrs (Martin et al., 2005) " 800,000 miscarriages " 33,000 stillbirths " 19,000 neonatal (Field & Behrman, 2003)

4 Serious, hronic Medical onditions of hildren n stimated that 1 M children in the US (10%) live with lifethreatening illnesses n Significant gaps in access to health care and palliative care n Socially disadvantaged have higher mortality rates at younger age Field & assel, 1997; Hoyert et al., 2005; Yabroff et al., 2004

5 History of When hildren Die, IOM report, 2003: Integrating effective palliative care from the time a child s lifethreatening medical problem is diagnosed will improve care for children who survive as well as children who die-and will help the families of all these children.

6 IOM onsensus Definition Palliative care seeks to " Prevent or relieve the symptoms produced by a life-threatening medical condition or its treatment " Help patients with such conditions and their families live as normally as possible " Provide them with timely and accurate information in decision making

7 ontext & hallenges n n More children are now surviving infancy " Vaccines/IU/prenatal diagnoses/surgery Patterns of child mortality differ " 50% all deaths in infancy " 30% deaths from injury n Unique issues: " ot small adults IOM Report, 2003

8 Percentage of total childhood deaths by age group (1999) IOM, 2003

9 To provide a comprehensive national effort to improve end-of-life care by nurses

10 ity of Hope Previous Research* ( ) n urriculum Survey n Textbook Review n O Survey *All demonstrated need to improve endof-life nursing care

11 Summary of Texts =50 % Total Pages 45, % # Pages Related to O 902 2% # hapters 1, % # hapters Related to O % Ferrell et al, OF 26(5), 1999

12 Review of Pediatric Texts Texts Reviewed = 3 Pediatric ursing: aring for hildren (Ball & Bindler) ssentials of Pediatric ursing (Whaley & Wong) Thompson s Pediatric ursing (Schulte)

13 Pediatric Review Total Pages = 2599 Pages r/t O = 33.5 or 1.3% Total hapters = 70 hapters r/t O = 2 of 2.8% * All 3 texts later were award winners

14 Partners in are

15 Background of n Pediatrics included in ore since inception n September 11, 2001 decision to create - PP

16 Background (cont.) n Draft curriculum created 10/01-6/02 n Pilot course held in orth arolina 6/02

17 Background (cont.) n Revision of syllabus with consultants 7/02 7/03 n First national trainers conference August 2003

18

19 ourse n page syllabus n 3-Day Train-the-Trainer n Multiple teaching methods: " Videos " Roundtables " Didactic " on-drug labs " Role play

20

21

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23 Pediatric Palliative are Modules Module 1 ursing are in Module 2 Special onsiderations in Module 3 ommunication Module 4 thical/egal Issues Module 5 ultural onsiderations

24 Pediatric Palliative are Modules (cont.) Module 6 Pain Management Module 7 Symptom Management Module 8 are at the Time of Death Module 9 oss, Grief, and Bereavement Module 10 Models of xcellence in Pediatric Palliative are

25 A Brief ife

26 valuation Data (10 courses) n 1680 Participants n Representing all 50 states and other international countries (i.e. anada, Philippines and igeria)

27 Pediatric Palliative are valuation Data Barriers Identified in Teaching Pediatric Palliative are: n Fears associated with dying n ultural beliefs n ack of educational resources n ack of staff time n Difficulties in determining prognosis of children

28 The Hands of a urse

29 Disseminating and Implementing -PP

30 JAT D Hospice of the Good Shepherd hambersburg, PA n Organizes and provides an annual children s bereavement camp n Uses -PP curriculum to train camp counselors n Speaks at local schools about children and grief

31 KATHY Y HO USF hildren s Hospital San Francisco, A n Promotes monthly pc rounds with interdisciplinary team n Developed pain, anxiety, dyspnea, and terminal agitation algorithms n Finalized standardized pediatric pc orders n ompleted a pc educational binder for the nursing unit

32 AYDA AMBAYA St. Jude hildren s Research Hospital Memphis, T n Developed a web-based version of -PP (www.cure4kids.org) n Over-seeing the online version of -PP as it is being translated in Portuguese and Spanish n ow implementing widely in the Philippines

33 MARGY MAYFID oastal Kids Home are Watsonville, A n o-founder of the only non-profit licensed home health agency for children with lifethreatening and/or terminal illness in the state of A n overs 4 counties and 7 area hospitals

34 MARGI RADOPH Sutter Memorial Hospital hildren s enter Sacramento, A n Trains new nurses in orientation about pediatric pc n Holds staff bereavement and coping classes for all pediatric staff

35 GRG BURS The Jason Program Saco, M n Uses -PP to train home healthcare providers n ollaborated with -ore trainers to hold a joint - ore and -PP course

36 athania Bush & Teresa Howell Morehead State University, KY n amp SMI " Partnership with St. laire Hospice " amp for children ages 5-17 experiencing loss " ursing students trained in grief, growth development, etc " 2 credit elective course " amp held in July 08 and 09 with over 100 children attending

37 Melanie Steilen Pediatric P onsultant, ew York, Y n Providing training to 2 interdisciplinary groups at the Brooklyn Visiting urses Services of Y n In the process of forming a pediatric palliative care division for homecare

38 Julie Faught hildren s Hospital Birmingham, A n n First 8 months of beginning pc consult service, 96 children were served PAS 96 nurses trained in palliative care " Referrals 30% " Daily rounds Palliative are, hildren s Hospital Birmingham, A

39 Margaret Farrar-aco Akron hildren s Hospital, OH n ducates new graduate nurses n Develops relationships and educates in long-term care, homecare, and hospice agencies regarding pediatric palliative care

40 Mary Spicketts Hospice of Michigan, Ada, MI n Provides perinatal services to families giving birth to a child with lifethreatening anomalies " Supports parents, siblings, grandparents " Works with genetic counselor " Accompanies family to Dr s appointments to receive bad news n Goal: Support through months leading up to delivery " Support All decisions made by family " Keep baby comfortable " Minimize invasive tests, " Allow family control (holding baby as long as they wish, taking baby home, etc) " Provide bereavement services

41 ancy Diane Manelli-Brewer Hospice of Sacred Heart, ugene, OR n n ittle Stars: nables infants/children with life-limiting illness to receive care at home ourageous Kids: Support group for youth ages 6-18 " Area schools " Residential summer camp

42 APO: An Organization ommitted to O/P ducation n Through the leadership of APO approx. 20 faculty have been assembled to provide - PP training n Six courses held across the US n Total trained = 456 from 30 states, anada, Sao Paulo, Australia, Japan n mphasis on interdisciplinary

43 ori Butterworth and Devon Dabbs hildren s Hospice and Palliative are oalition Watsonville, A n n n n o-founders Directors Advocates Spokespersons Have successfully supported legislation enabling children and their families access to concurrent care (curative and palliative care)

44 mergency Room in A: Taking hildren to the Morgue n Pre- " Unable to reach parents immediately, child was taken from the D to the morgue " Family members were escorted to the morgue by security guard

45 mergency Room in A: Taking hildren to the Morgue (ont.) n Post- " Holding room was designated in the R " Room was painted " Staff trained to be with these families as they viewed their child " Follow-up care provided to family

46 The Website: n Provides trainer s names by state n ists future trainings n Resources n Publications n The onnections n Award winners n Up-dates n Much more

47

48

49 PP Future Directions for Pediatric Palliative are

50 ife in the IU

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