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2 Itegratig palliative care ad symptom relief ito paediatrics: a WHO guide for health care plaers, implemeters ad maagers ISBN World Health Orgaizatio 2018 Some rights reserved. This work is available uder the Creative Commos Attributio-NoCommercial-ShareAlike 3.0 IGO licece (CC BY-NC-SA 3.0 IGO; Uder the terms of this licece, you may copy, redistribute ad adapt the work for o-commercial purposes, provided the work is appropriately cited, as idicated below. I ay use of this work, there should be o suggestio that WHO edorses ay specific orgaizatio, products or services. The use of the WHO logo is ot permitted. If you adapt the work, the you must licese your work uder the same or equivalet Creative Commos licece. If you create a traslatio of this work, you should add the followig disclaimer alog with the suggested citatio: This traslatio was ot created by the World Health Orgaizatio (WHO). WHO is ot resposible for the cotet or accuracy of this traslatio. The origial Eglish editio shall be the bidig ad authetic editio. Ay mediatio relatig to disputes arisig uder the licece shall be coducted i accordace with the mediatio rules of the World Itellectual Property Orgaizatio. Suggested citatio. Itegratig palliative care ad symptom relief ito paediatrics: a WHO guide for health care plaers, implemeters ad maagers. Geeva: World Health Orgaizatio; Licece: CC BY-NC-SA 3.0 IGO. Cataloguig-i-Publicatio (CIP) data. CIP data are available at Sales, rights ad licesig. To purchase WHO publicatios, see To submit requests for commercial use ad queries o rights ad licesig, see Third-party materials. If you wish to reuse material from this work that is attributed to a third party, such as tables, figures or images, it is your resposibility to determie whether permissio is eeded for that reuse ad to obtai permissio from the copyright holder. The risk of claims resultig from ifrigemet of ay third-party-owed compoet i the work rests solely with the user. Geeral disclaimers. The desigatios employed ad the presetatio of the material i this publicatio do ot imply the expressio of ay opiio whatsoever o the part of WHO cocerig the legal status of ay coutry, territory, city or area or of its authorities, or cocerig the delimitatio of its frotiers or boudaries. Dotted ad dashed lies o maps represet approximate border lies for which there may ot yet be full agreemet. The metio of specific compaies or of certai maufacturers products does ot imply that they are edorsed or recommeded by WHO i preferece to others of a similar ature that are ot metioed. Errors ad omissios expected, the ames of proprietary products are distiguished by iitial capital letters. All reasoable precautios have bee take by WHO to verify the iformatio cotaied i this publicatio. However, the published material is beig distributed without warraty of ay kid, either expressed or implied. The resposibility for the iterpretatio ad use of the material lies with the reader. I o evet shall WHO be liable for damages arisig from its use. Desig ad layout by Jea-Claude Fattier Prited i Switzerlad Photograph credits (cover images startig from top-right, i ati-clockwise directio): 1. WHO PAHO Carlos Gaggero; 2. WHO/SEARO/Auradha Sarup; 3. WHO/SEARO/Hayley Goldbach; 4. WHO/PAHO/Victor Ariscai; 5. WHO/TDR/ Ady Craggs; 6. WHO/Chris de Bode; 7. WH /Fid Thompso; 8. WHO/SEARO/Auradha Sarup.

3 A WHO guide for plaers, implemeters ad maagers Cotets Foreword v Ackowledgemets vi Abbreviatios ad acroyms vii Itroductio Chapter 1. What is paediatric palliative care? Chapter 2. Access to palliative care ad symptom relief Chapter 3. Palliative care ad symptom relief as part of comprehesive paediatric care - 21 Chapter 4. Essetial package of paediatric palliative care ad symptom relief (ep ped) - 25 Chapter 5. Implemetig PPC ad symptom relief Chapter 6. Esurig access to essetial medicies Chapter 7. Itegratio of palliative care ad symptom relief ca stregthe health care systems ad promote UHC Chapter 8. Research ad quality improvemet i paediatric palliative care Refereces Aexes Aex 1 Adopted ad opeed for sigature, ratificatio ad accessio by Uited Natios Geeral Assembly resolutio 44/25 of 20 November Aex 2 Sevetieth World Health Assembly resolutio WHA70.12 o Cacer prevetio ad cotrol i the cotext of a itegrated approach (excerpts) Aex 3 Child-friedly health care: a maual for health workers (excerpts) Aex 4 Sixty-seveth World Health Assembly resolutio WHA67.19 o Stregtheig of palliative care as a compoet of comprehesive care throughout the life course Aex 5 Sample curricula i paediatric palliative care Aex 6 Liks Aex 7 Glossary iii

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5 A WHO guide for plaers, implemeters ad maagers Foreword The World Health Assembly has resolved that providig access to palliative care for childre is a ethical resposibility of health systems (Aex 1) ad that itegratio of palliative care ito public health-care systems is essetial for achievemet of the Sustaiable Developmet Goal o uiversal health coverage (WHA 67.19). Yet access to paediatric palliative care ad symptom relief is very rare i a umber of coutries. As a result, millios of the world s vulerable childre suffer uecessarily each year. A wide rage of childhood health problems ca geerate the eed for palliative care ad symptom relief icludig ot oly advaced ocommuicable disease (Aex 2) ad HIV/AIDS, but also severe prematurity, birth trauma, cogeital aomalies, severe o-progressive disabilities such as paraplegia ad quadriplegia, drug-resistat tuberculosis ad ijuries. Paediatric palliative care requires special kowledge ad skills, ad it is essetial that all providers of primary health care for childre ad paediatric specialty care possess these competecies. This documet is part of a series of WHO publicatios o palliative care. Their objective is ot to provide cliical guidelies, but rather practical guidace o itegratig palliative care ad symptom relief ito health care systems. The curret publicatio is iteded to assist ayoe ivolved with plaig, implemetig, maagig or assurig the quality of health care for childre to itegrate palliative care ad symptom relief such that the quality of life of childre ad their families will be improved, health-care systems will be stregtheed ad cost-effective models of service provisio will be implemeted. With this guide, WHO reiterates its commitmet to aswerig the eeds ad expectatios of all people, especially the most vulerable. Dr Naoko Yamamoto Assistat Director-Geeral Uiversal Health Coverage ad Health Systems World Health Orgaizatio Geeva Switzerlad v

6 Itegratig palliative care ad symptom relief ito paediatrics Ackowledgemets Developmet of this guide was coordiated by Eric Krakauer with overall supervisio by Marie-Charlotte Bouësseau ad Edward Kelley from the WHO Departmet of Service Delivery ad Safety. WHO is grateful to the pricipal writig team cosisted of Jim Cleary (Uiversity of Wiscosi, USA), Stephe Coor (Worldwide Hospice Palliative Care Alliace), Julia Dowig (Iteratioal Childre s Palliative Care Network/Makerere Uiversity, Ugada), Stefa Friedrichsdorf (Childre s Hospitals ad Cliics of Miesota, USA), Rut Kima (Hospital Natioal Prof. A. Posadas, Argetia), Eric Krakauer (WHO), Ella Kumirova (Dmitri Rogache Natioal Ceter of Pediatric Hematology, Ocology ad Immuology, Russia Federatio), Joa Marsto (Palliative Care i Humaitaria Aid Situatios & Emergecies (PALCHASE)), Michelle Meirig (Paedspal ad the Uiversity of Cape Tow, Republic of South Africa), Sadath Sayeed (Bosto Childre s Hospital ad Harvard Medical School, USA) ad Meagha Weaver (Had I Had/ Pediatric Palliative Care). WHO ackowledges the valuable cotributios provided by Emily B. Esmaili (Duke Uiversity, USA), Nacy Hutto (Johs Hopkis Uiversity School of Medicie, USA), Bui Thah Huye (Uiversity of Medicie & Pharmacy at Ho Chi Mih City, Vietam), Hatoko Sasaki (Natioal Ceter for Child ad Developmet, Japa), Noyuri Yamaji (St. Luke s Iteratioal Uiversity Graduate School of Nursig, Japa); as well as the helpful commets of Natalia Arias, Justi Baker, Jua Pablo Beca, Mercedes Beradá, Silvia Bevilacqua, Carlos Ceteo, Mega Doherty, Hera Garcia, Eduardo Garralda, Catherie Habashy, Nago Humbert, Jey Hut, Erica Kaye, Suresh Kumar, Emmauel Luyurika, Alexadra Macii, Regia Okhuyse-Cawley, Roberta Ortiz, Rojim J Sorrosa, Rodolfo Vera ad Joae Wolfe. A additioal cotributor from WHO was Cheria Varghese. This publicatio was kidly fiaced by the True Colours Trust. vi

7 A WHO guide for plaers, implemeters ad maagers Abbreviatios ad acroyms AIDS APCA CFHI CHC CHW EAPC EP Ped GP HIC HIV ICPCN IDT INCB LMIC MoH NCD NGO PHC PPC SDG SSRI UHC UN WHA WHO acquired immuodeficiecy virus Africa Palliative Care Associatio Child Friedly Healthcare Iitiative commuity health cetre commuity health worker Europea Associatio for Palliative Care Essetial Package of Palliative Care for Paediatrics ad Symptom Relief geeral practitioer high-icome coutry huma immuodeficiecy virus Iteratioal Childre s Palliative Care Network iterdiscipliary [palliative care] team Iteratioal Narcotics Cotrol Board low- ad middle-icome coutry Miistry of Health ocommuicable disease ogovermetal orgaizatio primary health care paediatric palliative care Sustaiable Developmet Goal selective serotoi reuptake ihibitor uiversal health coverage Uited Natios World Health Assembly World Health Orgaizatio vii

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9 A WHO guide for plaers, implemeters ad maagers Itroductio People youger tha 20 years comprise 35% of the global populatio ad 40% of the global populatio of least-developed atios (1). The umber of childre eoates, ifats, childre, ad adolescets up to 19 years of age who eed pediatric palliative care (PPC) each year may be as high as 21 millio (2). Aother study foud that almost 2.5 millio childre die each year with serious healthrelated sufferig ad that more tha 98% of these childre are i low- ad middle-icome coutries (LMICs) (3). While estimates differ, there is o doubt that there is a eormous eed for prevetio ad relief of sufferig amog childre (Aexes 1 ad 3) for PPC. I respose to the large-scale uecessary sufferig of childre, the 2014 World Health Assembly resolutio WHA67.19 o Stregtheig of palliative care as a compoet of comprehesive care throughout the life course emphasizes that access to palliative care for childre is a ethical resposibility of health systems (Aex 4) (4). Remarkably, however, PPC has ot bee see as a priority aroud the world. A 2011 study foud o PPC services i 65.6% of coutries (5). Where services do exist i LMICs, they typically are available i oly oe or a few istitutios ad are ot itegrated ito health care systems. A review of PPC i sub-sahara Africa coutries foud that less tha 1% of childre eedig palliative care i Keya had access to it ad less tha 5% i South Africa ad Zimbabwe (6). This guide is part of a series of World Health Orgaizatio (WHO) guidace documets o palliative care (7). It describes the medical ad moral ecessity of makig palliative care ad pai relief accessible to all childre i eed, ad their families. It offers a expaded coceptio of PPC based o the eeds of childre i LMICs as well as i high-icome coutries (HICs). It also proposes a Essetial Package of Palliative Care for Paediatrics ad Symptom Relief (EP Ped) ad provides practical guidace o itegratig PPC ad pai relief ito health care systems such that the quality of life of childre ad their families is improved, health care systems are stregtheed ad cost-effective models of service provisio are implemeted, all of which cotribute to the goal of uiversal health coverage (UHC). This documet is ot a cliical maual, ad it does ot provide cliical guidelies. Rather, its cotets are relevat to ayoe ivolved with plaig, implemetig or maagig PPC, icludig officials of Uited Natios (UN) orgaizatios workig with childre, Miistry of Health (MoH) officials, public health leaders, hospital maagers, ogovermetal orgaizatios (NGOs), geeral ad specialist paediatricias, surgeos, aaesthesiologists, primary care providers ad palliative care providers. It has bee developed by a workig group of experts i PPC ad symptom relief from aroud the world with extesive experiece i workig i LMICs. 1

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13 A WHO guide for plaers, implemeters ad maagers What is paediatric palliative care? Part 1. Defiig palliative care WHO defies palliative care as the prevetio ad relief of sufferig of adult ad paediatric patiets ad their families facig the problems associated with life-threateig illess (8). These problems iclude the physical, psychological, social ad spiritual sufferig of patiets, ad psychological, social ad spiritual sufferig of family members. Palliative care (9): etails early idetificatio ad impeccable assessmet ad treatmet of these problems; ehaces quality of life, promotes digity ad comfort, ad may also positively ifluece the course of illess; provides accompaimet for the patiet ad family throughout the course of illess; should be itegrated with ad complemet prevetio, early diagosis ad treatmet of serious, complex or life-limitig health problems; is applicable early i the course of illess i cojuctio with other therapies that are iteded to prolog life; provides a alterative to disease-modifyig ad life-sustaiig treatmet of questioable value ear the ed of life; is applicable to those livig with log-term physical, psychological, social or spiritual sequelae of serious, complex or life-limitig illesses or of their treatmet; accompaies bereaved family members after the patiet s death; seeks to mitigate the pathogeic effects of poverty o patiets ad families ad to protect them from sufferig fiacial hardship due to illess or disability; does ot itetioally haste death, but provides whatever treatmet is ecessary to achieve a adequate level of comfort for the patiet i the cotext of the patiet s values; should be applied by health care workers of various kids, icludig primary care providers, geeralists ad specialists i may disciplies ad with various levels of palliative care traiig ad skill, from basic to itermediate to specialist; ecourages active ivolvemet by commuities ad commuity members; should be accessible at all levels of health care systems ad i patiets homes; ad improves cotiuity of care, stregthes health systems ad promotes UHC. The specific types ad severity of sufferig vary accordig to geopolitical situatio, socioecoomic coditios ad culture. Childre ad their families i LMICs ofte edure uhealthy social coditios. They also typically have less access to disease prevetio, diagosis ad treatmet, to social supports ad to specialists ad specialized services of may kids tha childre i HICs. For example, may childre have 5

14 Itegratig palliative care ad symptom relief ito paediatrics limited or o access to cacer chemotherapy, radiatio therapy or ocologic surgery, to effective treatmet for multidrug-resistat tuberculosis or to eoatal or paediatric itesive care. Palliative care should ever be cosidered a substitute for disease prevetio ad treatmet or for critical care, ad palliative care workers have a resposibility to advocate for them wherever they are ot yet accessible (9,10,11). But palliative care also should be uiversally accessible (4). May coutries also lack rehabilitatio medicie specialists ad services ad log-term care facilities to care for childre with o-life-threateig but serious disabilities such as paraplegia or quadriplegia or those due to brai ijuries or cogeital aomalies. I additio, metal health services ad social, welfare programmes may be of limited capacity, difficult to access or uavailable. Palliative care ca help to address these eeds (Table 1). Further, the types of sufferig typically associated with life-threateig illess pai, other physical symptoms, psychological symptoms also occur acutely or i associatio with o-life-threateig coditios. But i low-resource settigs, prevetio ad relief of acute sufferig ad of sufferig due to o-life-threateig coditios ofte are iadequate or uavailable. For example, i coutries where pai medicie does ot yet exist as a specialty ad where few doctors prescribe opioid pai medicies, prevetio ad relief of pai from trauma or burs or surgery typically are iadequate. Thus, i these settigs, cliicias traied i palliative care could fill this therapeutic void either by traiig colleagues i symptom cotrol, by providig direct symptom relief, or both. Plaig ad implemetig palliative care services should based o assessmet of the types ad extet of iadequately preveted or relieved physical, psychological, social or spiritual sufferig. This attetio to local eeds is ecessary for palliative care services to be people-cetred: tailored to local eed ad to the eeds of idividual patiets ad families (3,12). Table 1. Type of sufferig ad palliative care eed Patiet populatio HICs palliative care eed LMICs palliative care eed Advaced chroic NCDs High High HIV/AIDS Moderate Very high Drug-resistat tuberculosis Very low High i some regios Critical illess High High Neoates with severe prematurity, birth trauma or cogeital aomaly High Very high Severe o-progressive disabilities such as paraplegia ad quadriplegia Moderate High Severe social distress such as extreme poverty or stigmatizatio Low High Acute symptoms related to illess, ijuries, surgery Not applicable High Health emergecies ad crises Very low High i some areas 6

15 A WHO guide for plaers, implemeters ad maagers Part 2. How does palliative care differ betwee childre ad adults? Childre are ot little adults. While the defiitio ad priciples of palliative care i Part 1 of this chapter apply to the etire lifespa, PPC requires attetio to physical, developmetal, psychosocial, ethical, spiritual ad relatioal pheomea that are uique to childre (Table 2). Saliet differeces betwee adults ad childre for PPC iclude the followig. Passage through the differet developmet stages Childre chage cotiually as they grow from eoates to adolescets. Childre udergo marked physical chage, lear to talk, mature i their ability to uderstad illess ad become more idepedet ad self-reliat. Because childre proceed at differet speeds through the may developmetal milestoes, palliative care providers should become adept at assessig the uique developmetal stage ad eeds of each child ad at respodig appropriately. Childre who have grow up with chroic illess, iteractig with cliicias ad hospitals, ted to have a more mature uderstadig of illess, death ad dyig tha childre of their age who have bee healthy most of their lives. Commuicatio eeds Good commuicatio with patiets ad their families requires sesitivity to the child s developmetal stage ad to the laguage, culture ad illess uderstadig of both the patiet ad family ad to their degree of trust i the health care system. To the greatest extet possible, PPC elicits a child s report of her/his symptoms usig, for example, validated paediatric pai scales. PPC also hoours each child s values as much as possible ad seeks their ucoerced directio, alogside that of the family, about treatmets ad goals of care. Patiets who have ot yet reached maturity or the legal age of coset sometimes may disagree with their parets or family caregivers about these issues. Depedece o adults Childre s depedece o others rages from the total depedece of a eoate to the high degree of idepedece of some adolescets who may sometimes wat to be see as a child whe seriously ill. Impact o families While a child s serious or life-threateig illess profoudly impacts ay family, the impact may be greatest i LMICs. Eve where treatmet is provided free of charge or mostly covered by isurace, the illess ca result i fiacial hardship or catastrophe for the family. Co-paymets for treatmet, or gratuities may i themselves strai or exceed a family s fiacial capabilities. I additio, families must pay for travel to the cliic or hospital ot oly for the patiet, but also for a family caregiver. If the patiet remais i the hospital, the family caregiver ofte a paret or older child must pay for meals ad ofte also a place to sleep. That paret or older child is the uable to work ad care for the household. This may result i sibligs beig take out of school either for lack of school fees or because they must work or care for youger sibligs. To pay these expeses, families must ofte sell their possessios, icludig farm aimals, lad, tools or machies eeded to ear a livig, or eve their homes. Too ofte, a child s illess results i the family s fiacial impoverishmet as well (13 15). PPC must assess these risks ad respod to them with social supports (Chapter 4). Eve whe the family s fiacial situatio is stable, the emotioal impact of a child s serious or lifethreateig illess is usually profoud. The emotioal distress of parets whose child is experiecig serious or life-threateig illess typically is much greater tha for a family member of a adult with a similarly serious coditio. Parets ofte seek ay treatmet that might help their child, eve 7

16 Itegratig palliative care ad symptom relief ito paediatrics if it takes them far from home ad far exceeds their fiacial resources. Thus, PPC etails takig time to explore parets uderstadig of their child s diagosis ad progosis ad to getly correct misuderstadigs. Parets have reported that they might have made differet decisios if they had uderstood earlier what they uderstood after their child had died. I additio, each family has uique psychosocial characteristics. A child with a life-threateig disease may strai or challege existig relatioships withi the family. Role reversal, overly emeshed relatioships, ad alliaces ad coflicts betwee family members may occur. A dysfuctioal family may sigificatly impair the child s quality of life. PPC icludes assessmet of family fuctio ad efforts to resolve coflict or dysfuctio. Types of health coditios The wide rage of childhood illesses icreases the difficulty of providig PPC services that meet each child s eeds. Further, may paediatric geetic or cogeital coditios are rare ad ot see i adults, the symptoms may differ i each child ad there may be o clear diagosis or progosis (16). Paediatric formulatios ad dosig of essetial medicies It is easier to provide the correct weight-based dose for a youg child of a liquid formulatio of a medicie, ad it is easier for a child to swallow. Where o liquid or paediatric formulatio of a essetial medicie such as oral morphie is accessible, pills may be cut i halves or quarters or crushed ad mixed with food or dissolved i liquid. However, it is difficult to provide a accurate dose i this maer. Further, the pharmacokietics of medicies are ofte differet i childre tha i adults, but there may be little or o evidece o the safety ad effectiveess of some palliative medicies i childre. Whe there is o alterative to a give medicie to relieve a child s symptom, particular judiciousess ad vigilace are eeded o the part of the cliicia (17). Degree of difficulty of cliical decisio-makig Decisio-makig about usig, withholdig or withdrawig disease-modifyig or life-sustaiig treatmets of questioable beefit for a child ca be especially difficult for a variety of reasos. Parets ofte have more difficulty uderstadig or acceptig the poor progosis of a child tha of a aged family member. Cliicias, too, may fid it most difficult to weigh the relative beefits ad burdes of a itervetio whe the patiet is a child. I additio, modes of decisio-makig for ill childre uable to speak for themselves ofte vary by culture, by family ad sometimes eve withi families. Wheever possible, getle but diliget efforts should be made to uderstad the child s perspective. Cliical eviromet PPC wards ad cliics should be made as child-friedly ad comfortig as possible. The comfort of paediatric patiets ca be promoted by eablig at least oe family member to be preset ad comfortable (to have adequate food ad a comfortable place to sleep ear the patiet at a affordable cost). The child s comfort also ca be ehaced with distractig pictures or soothig colors o the wall, comfortig ad clea textures o the beddig, getle souds such as soft music or lullabies, or calmig toys. 8

17 A WHO guide for plaers, implemeters ad maagers Table 2. PPC: differeces from adult palliative care Progosis, life expectacy ad fuctioal outcome ofte less clear. More frequet eed to itegrate palliative care with itesive disease-modifyig or life-sustaiig treatmets due to uclear progosis. Care ofte requires a dual focus o growth/developmet ad potetial for death. Greater emotioal burde for family members ad cliicias because serious ad life-threateig illesses are ot commoly cosidered ormal coditios for childre. Patiets udergo cotiual developmetal chage: physical, hormoal, cogitive, expressive ad emotioal. Patiets have chagig iformatio eeds, recreatioal ad educatioal eeds, ad modes of copig with stress. Thus, child life specialists, play therapists ad behavioural specialists ca greatly ehace palliative care for childre. Patiets may have cogeital aomalies of ucertai type or rare geetic coditios. Some geetic coditios may affect multiple childre i a family ad create a sese of guilt i parets. Expertise eeded both to discer a child s emotioal ad cogitive developmet ad to commuicate i a maer appropriate for the child s emotioal ad cogitive developmet: to provide the most appropriate amout ad kid of iformatio about the illess ad to elicit the child s prefereces for care. Sources: Adapted from Levie et al (18) ad Weaver et al (19). Part 3. Who requires PPC? Childre with a wide rage of health coditios require PPC (Tables 3 ad 4). Thus, PPC should be itegrated ito all sectors ad all levels of child health care, ad it should be itegrated with may types of potetially curative ad life-sustaiig treatmets (Chapter 5) (20,21). I additio, clear plas should be put i place to make sure palliative care cotiues without iterruptio whe childre with log-term palliative care eeds become adults. I LMICs, efforts to itegrate palliative care ito health care systems should always be accompaied by efforts to maximize accessibility of prevetio, early diagosis ad treatmet of serious ad life-threateig illesses (21,22). However, this accessibility is very limited for may childre i LMICs (5,23 25). I additio, as may as 80% of maligacies ad may cases of orga failure are diagosed very late i their course whe curative treatmet is ot available i the coutry or does ot exist (26 28). Therefore, the eed for PPC is greatest i LMICs, yet few PPC services exist i these coutries (Chapter 2). 9

18 Itegratig palliative care ad symptom relief ito paediatrics Table 3. Populatios that eed PPC Populatio Childre with acute life-threateig coditios from which recovery may or may ot be possible Childre with chroic life-threateig coditios that may be cured or cotrolled for a log period but that may also cause death Childre with progressive life-threateig coditios for which o curative treatmet is available Childre with severe eurologic coditios that are ot progressive but may cause deterioratio ad death Neoates who are severely premature or have severe cogeital aomalies Family members of a fetus or child who dies uexpectedly Examples Ay critical illess or ijury, severe malutritio Maligacies, multidrug-resistat tuberculosis, HIV/AIDS Spial muscular atrophy, Duchee s muscular dystrophy Static ecephalopathy, spastic quadriplegia, spia bifida Severe prematurity, aecephaly, cogeital diaphragmatic heria, trisomy 13 or 18 Fetal demise, hypoxic-ischaemic ecephalopathy, overwhelmig sepsis i a previously healthy child, trauma from motor vehicle accidet, burs, Sources: Dowig et al (29); Wood et al (30). Table 4. Coditios that commoly geerate a eed for PPC Coditio Examples of palliative care eeds Maligacies (paediatric types differ from those i adults) Leukaemias: haemorrhage due to coagulopathies, paiful procedures such as boe marrow biopsies Coditios discovered or occurrig i the periatal period (31 33) Brai tumour: headache, cogitive ad eurologic deficits Sarcomas: severe pai, loss of a limb Cogeital aomalies: symptomatic dysfuctio of a vital orga such as the heart, bowel or brai; stigmatized superficial aomalies Prematurity: respiratory distress, itravetricular haemorrhage, brai ischaemia ad permaet eurodevelopmetal disability Birth asphyxia: hypoxic-ischaemic brai ijury ad permaet eurodevelopmetal disability Ijuries Head trauma: poor cogitive ad motor skills Burs: acute ad sometimes also chroic pai, stigmatized disfiguremet Exposure to violece, coflict or atural hazard: mood disorders such as axiety, depressio, post-traumatic stress disorder Serious ifectios HIV/AIDS: symptomatic opportuistic ifectios, stigmatizatio, adverse effects of medicies Drug-resistat tuberculosis: cough, costitutioal symptoms (fever, sweats, weight loss), adverse effects of medicies, social isolatio, stigmatizatio Meigitis: permaet eurodevelopmetal disability Rheumatic fever: symptomatic heart failure Geetic coditios Neurologic coditios: progressive eurological deficits ad disability Sickle cell disease ad aaemia: pai crises, boe ecrosis Coective tissue disorders: chroic pai 10

19 A WHO guide for plaers, implemeters ad maagers Protei eergy malutritio Pai, dyspea Vomitig or diarrhoea related to re-feedig Beig a patiet Paiful procedures Postoperative pai Not havig a opportuity to have questios aswered ad fears assuaged Sources: Adapted from Kaul et al (3) ad Krakauer et al (22). Part 4. Palliative care plus : prevetig ad relievig the sufferig of childre without a life-threateig illess Attetively idetifyig, prevetig ad maagig a child s pai is a moral ad ethical imperative, regardless of the patiet s age (eve eoates experiece pai), ability to commuicate or cogitive capacity, or health coditio (22,34). Where acute ad procedural pai cotrol ad services for childre with severe disabilities or cogeital aomalies are readily available, as they ofte are i HICs, palliative care ca focus etirely o childre with life-threateig illesses. However, where these services are ot easily accessible, as is ofte the case i LMICs, cliicias traied i palliative care should provide them, or teach others to provide them, i additio to carig for childre with life-threateig illesses. Acute ad procedural pai Acute pai from traumatic ijuries is ofte iadequately treated i childre or ot treated at all. The result is ot oly uecessary sufferig from the pai itself, but also greater emotioal distress o the part of the child ad family, greater difficulty i treatig the patiet due to pai-related fear ad agitatio, ad a higher risk of chroic emotioal sequelae such as post-traumatic stress disorder (35). Procedural pai is a commo yet prevetable cause of sufferig i childre. For quick ad miimally ivasive procedures such as phlebotomy, simple o-pharmacologic techiques ca be used before, durig ad after the procedures to miimize pai ad its associated fear ad distress. Distractio or relaxatio techiques prior to ad durig paiful procedures ca help patiets ad caregivers maitai a sese of cotrol ad decrease the perceived itesity of symptoms. Topical aalgesia also ca be used, if available. For more complex procedures, such as bur dressig chages, systemic aalgesia medicatio should be used. Itra-operative ad postoperative pai usually require a opioid. Examples of paiful procedures: phlebotomy ijectios lumbar pucture boe marrow aspirate thoracetesis dressig chages. 11

20 Itegratig palliative care ad symptom relief ito paediatrics Childre who suffer without a clearly life-threateig coditio There is a large burde of sufferig amog childre with severe physical disabilities i both HICs ad LMICs. Although the rage of diagoses is large ad diverse, there are commo types of sufferig experieced by childre with disabilities that ca be relieved through palliative care approaches (36). Whether the disability is due to a traumatic ijury, cogeital aomaly or geetic coditio, pai ad social isolatio ad stigmatizatio are commo. Other chroic physical or psychological symptoms may be preset depedig o the specific coditio. I additio, wheever a child (or adult) is permaetly uable to feed or wash herself, walk or use the toilet idepedetly, this may cause physical, fiacial ad emotioal burdes for the family, especially a rural poor family. Palliative care providers may be the oly source of relief for these types of distress. Box 1. Child Friedly Healthcare Iitiative (CFHI) CFHI is based o the Uited Natios Covetio o the Rights of the Child (UNCRC) (Aexes 1 ad 3) ad was developed by Child Advocacy Iteratioal (CAI) with the techical support of WHO, the Royal College of Nursig (Uited Kigdom) ad the Royal College of Paediatrics ad Child Health (Uited Kigdom) i collaboratio with the Uited Natios Childre s Fud (UNICEF). The mai aim of CFHI is to develop a system of care focused o the physical, psychological ad emotioal well-beig of childre attedig health care facilities, particularly as ipatiets. A set of globally applicable stadards were proposed to esure that practices i hospitals ad health cetres everywhere respected childre s rights, ot oly relatig to survival ad avoidace of morbidity, but also i relatio to their protectio from uecessary sufferig ad their iformed participatio i treatmet (37). 12

21 A WHO guide for plaers, implemeters ad maagers 13

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23 A WHO guide for plaers, implemeters ad maagers Access to palliative care ad symptom relief Access to PPC lags far behid that of adult services. Developmet of PPC is hampered by a umber of factors icludig geography, lack of educatio, lack of public awareess, stigma ad lack of cosesus o the diseases ad coditios appropriate for PPC. There is resistace to admittig that childre eed palliative care because it is emotioally difficult to admit that childre suffer ad die. Further, may myths persist about carig for seriously ill childre, icludig a belief that childre are ot aware of their coditio ad do ot experiece pai i the same way as adults. Estimates of the eed for PPC are hampered by a lack of registries ad reliable data collectio from most coutries. Need is uevely distributed globally with almost half the eed i sub-sahara Africa ad 98% of the eed i LMICs. Childre eedig palliative care are ot cocetrated i ay oe area i a coutry ad are difficult to serve after leavig istitutios. Cliicias traied i PPC are few ad far betwee, ad childre sufferig from pai or other symptoms i a area without a traied cliicia are likely to have iadequate relief or oe at all. Estimatig the global eed for PPC Several estimates of the global eed for PPC have bee udertake i recet years (2,3,38). Oe estimate idetified 11 categories of coditios that geerate a eed for PPC at the ed of life oly ad the percetage of the eed due to each coditio (Figure 1). Figure 1. Coditios that geerate a eed for palliative care at the ed of life by disease group Edocrie, blood, immue disorders 5.85% Neurologicial coditios* 2.31% Cacer 5.69% Kidey diseases 2.25% Cirrhosis of the liver 1.06% Cogeital aomalies* 25.06% Cardiovascular disease 6.18% HIV/AIDS 10.23% Neoatal coditios* 14.64% Meigitis 12.62% Protei eergy malutrtio 14.12% *see excluded coditios (Appedix 6) N = 1, Source: Reprited with permissio from Coor et al (38). 15

24 Itegratig palliative care ad symptom relief ito paediatrics The total umber of childre i eed of PPC globally each year may be as high as 21 millio, ad of these, 8 millio may have problems that require specialist PPC (2). Local eed for PPC ca be estimated with assistace from key iformats ad the affected people. Direct stakeholders should be ivolved both i estimatig the eed ad i the plaig process for service implemetatio. A workig group o PPC sactioed by a miistry of health could examie local ad iteratioal data ad key iformat iformatio to estimate the probable rage of eed, from the lowest to the highest. Local mortality ad disease prevalece data ca be used, but these data are ofte ureliable or uavailable i LMICs. Mappig levels of palliative care developmet I additio to uderstadig the eed for childre s palliative care, it is also importat to assess the capacity to provide PPC globally. Mappig of levels of PPC developmet was udertake by the Iteratioal Childre s Palliative Care Network (ICPCN) usig a five-level schema (Figure 2) (29). Figure 2. Levels of PPC developmet i Source: Reprited with permissio from Dowig et al (29). 1. Evidece (from figure 2) of broad palliative care provisio for childre. Approachig full itegratio withi health care services as well as a atioal policy to support childre s palliative care. 2. Evidece of broad palliative care provisio for childre with traiig available ad focused plas for developmet of services ad itegratio ito health care services. 3. Evidece of localized palliative care provisio for childre ad availability of traiig. 4. Evidece of capacity buildig activities for the provisio of childre s palliative care. 5. No kow provisio of childre s palliative care. 16

25 A WHO guide for plaers, implemeters ad maagers Measuremet of eed for, ad capacity to deliver, PPC are ecessary elemets i plaig PPC i a coutry or regio. This is usually doe by kowledgeable idividuals (icludig a atioal palliative care associatio if there is oe) ad ca be doe sequetially. I most LMICs, there are few PPC programmes, ad these few may be kow to key iformats. The primary iformatio eeded is the capacity of these istitutios to deliver PPC icludig: umber of patiets who received care i oe year diagoses legth of service by diagosis ad overall average daily cesus. Surveys ca be used to collect these data with follow-up of o-respodets. Oce the eed for PPC has bee estimated ad capacity assessed, it is the possible to coduct a gap aalysis (38). Gap aalysis is essetial for health care plaig purposes as it shows the size of the umet eed for PPC. Disparity i access to palliative care Curretly, 98% of the eed for PPC is i LMICs, ad early 50% of the eed is i the Africa regio (Figures 3 ad 4). Yet few cliicias i LMICs have ay traiig i PPC. Figure 3. Distributio of childre i eed of palliative care by WHO regio AMR 8% EUR 3% WPR 7% EMR 12% AFR 49% SEAR 24% N = 1, AFR: Africa Regio; AMR: Regio of the Americas; SEAR: South-East Asia Regio; EUR: Europea Regio; EMR: Easter Mediterraea Regio; WPR: Wester Pacific Regio Source: Coor et al (38). 17

26 Itegratig palliative care ad symptom relief ito paediatrics Figure 4. Distributio of childre i eed of palliative care at the ed of life by World Bak coutry icome group Upper middle icome 14.4% High icome 2.1% Low middle icome 48.5% Low icome 35% N = 1, Source: Coor et al (38). Programmes i PPC A accurate estimate of the umber of PPC programmes worldwide is ot available at preset. However, a umber of cetres of excellece have bee idetified that ca serve as models for developmet: Members of ICPCN: All 196 members of the Uited Kigdom associatio Together for Short Lives: togetherforshortlives.org.uk/portal/public/voluteer/list.aspx Members of the Uited States Natioal Hospice ad Palliative Care Orgaizatio that have paediatric palliative care services: 18

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29 A WHO guide for plaers, implemeters ad maagers Palliative care ad symptom relief as part of comprehesive paediatric care Geeralist PPC Most childre sufferig from problems associated with serious or life-threateig health coditios do ot eed a PPC specialist. Most PPC ca be provided very well by geeralist cliicias with basic- or itermediatelevel traiig i palliative care, just as most ifectios ca be competetly treated by geeralist cliicias ad do ot require itervetio by a ifectious disease specialist. Thus, health systems should require that geeral paediatricias, geeral practitioers, family doctors ad paediatric urse practitioers have at least basic traiig i PPC, ad health system policies should make PPC oe of the official resposibilities of these cliicias (Aex 5). All palliative care traiig programmes i LMICs, whether basic, itermediate or specialist, should address the special problems ad eeds of paediatric patiets ad their families at least util there are adequate umbers of paediatric cliicias traied i palliative care. Thus, ay cliicia traied i palliative care should be able to provide at least basic palliative care to childre. There are may similarities betwee geeral paediatrics ad PPC that should facilitate itegratio of palliative care traiig ito paediatrics traiig ad practice. These iclude: emphasis o cotiuity of care ad developmet of a trustig therapeutic relatioship; itegrated bio-psycho-social care; attetio both to the patiet ad to the family; ad special attetio to patiets ad family members axieties about both illess ad treatmet. The emotioal discomfort of cotemplatig the death of childre ca be a barrier to itegratio of PPC ito geeral paediatrics. For the sake of patiets ad families, this barrier must be recogized ad overcome. Most patiets i eed of palliative care, whether adults or childre, are at home. Geeralist cliicias with palliative care traiig are essetial to makig palliative home care possible. First-level (district) hospitals should establish a palliative care ad pai cotrol cliic staffed by cliicias with basic or itermediatelevel palliative care traiig. Their roles would iclude (see also Chapter 5): ogoig outpatiet assessmet of symptoms ad adjustmet of symptom cotrol regimes to eable patiets to stay at home; ipatiet care for patiets whose symptoms caot be adequately cotrolled outside the hospital but who do ot require higher-level care; referral of patiets with severe or refractory symptoms to higher-level hospitals; ad traiig ad supervisio of cliicias providig palliative care at commuity health cetres (CHCs). I settigs where cliicias at the commuity level are ot permitted to prescribe opioids for outpatiets, physicias at the district level should take o this role for ay patiets i the district who require opioid therapy for pai or termial dyspea. Cliicias who provide palliative care at commuity CHCs which may iclude doctors, cliical officers, assistat doctors, urse practitioers or urses with advaced palliative care traiig should have basic traiig i palliative care (Aex 5). 21

30 Itegratig palliative care ad symptom relief ito paediatrics Their roles should iclude (Chapter 5) (22,39): ogoig outpatiet assessmet of symptoms ad adjustmet of symptom cotrol regimes to eable patiets to stay at home; ideally, at least oe cliicia at a CHC should be able to prescribe oral morphie for outpatiets; traiig ad supervisio of commuity health workers (CHWs) who visit patiets at home as ofte as daily to recogize ucotrolled symptoms or social or spiritual distress ad report it to the CHC; ad if possible, to provide ipatiet hospice or ed-of-life care for a maximum of oe or two patiets at a time whose symptoms are well cotrolled but whose families are uable to care for them at home. PPC provisio by physicia-specialists i disciplies other tha palliative care Specialist doctors who frequetly care for childre with serious or life-threateig coditios, such as ocologists, cardiologists, itesivists ad eoatologists, should be required to receive itermediate-level traiig i PPC (Chapter 5, Part 3). Health system policies should require that these physicias have PPC as oe of their official resposibilities. Specialist physicias traied i this way, usually based at secodlevel (provicial) or third-level (regioal referral) hospitals, will be able to respod adequately to most of the sufferig of childre that caot be adequately relieved at the district or commuity level by geeralist cliicias. I additio, these physicias will be capable of itegratig palliative care with the curative ad disease-modifyig treatmet for childre that they usually practise. Traiig i palliative care also will prepare them to recogize whe curative or life-sustaiig treatmet are likely to be more harmful tha beeficial ad to advise patiets ad families o the relative beefits ad burdes of potetial itervetios. Health system policies also should require that secod- ad third-level hospitals have a palliative care iterdiscipliary team (IDT) ad that specialist physicias with itermediate-level traiig i palliative care be affiliated with the IDT. Basic palliative care traiig for geeralist cliicias should iclude curriculum o whe ad how to refer patiets to the IDTs at higher-level hospitals. Specialist PPC Some childre have refractory or complex symptoms that eve physicias with itermediate-level PPC traiig may be uable to relieve. These patiets require itervetio by palliative care specialist physicias who lead palliative care IDTs. However, there are as yet few palliative care specialists i LMICs, eve fewer PPC specialist physicias ad o PPC specialist traiig programmes. Palliative care specialist traiig programmes should be created as soo as possible i LMICs, ad miistries of health should recogize palliative medicie as a official medical specialty to eable these programmes to develop ad their graduates to practise. Palliative care specialist traiig programmes should iclude traiig i PPC for all traiees, ad they should aim to develop a PPC specialist traiig track as soo as possible. Natioal health care policies should require major childre s hospitals to establish PPC services directed by PPC specialist physicias withi a specified period of time. 22 PPC specialist physicias ad IDTs are especially importat i paediatric cacer cetres. The majority of distressig symptoms i childre with advaced cacer, such as pai, dyspea ad ausea/vomitig, are treated iadequately or ot at all, eve i HICs (40 44). Further, ew targeted cacer therapies ad immuotherapies sometimes exacerbate symptoms, geerate ew oes or create complex cliical dilemmas for which palliative care expertise may be crucial. Similarly, hospitals that offer extra-corporeal membrae oxygeatio (ECMO) or other ivasive life-sustaiig treatmets should also offer palliative care provided by palliative care specialist physicias ad IDTs to miimize the discomfort of critical care, to offer a alterative to life-sustaiig treatmet of questioable beefit ad to esure the comfort of childre for whom life-sustaiig treatmet will be withdraw.

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33 A WHO guide for plaers, implemeters ad maagers Essetial Package of Paediatric Palliative Care ad Symptom Relief The Essetial Package of Paediatric Palliative Care ad Symptom Relief is the miimum palliative care ad symptom relief that should be accessible by ay child i ay settig. The EP Ped is based o the essetial package of palliative care described by Krakauer et al. (22) ad Kaul et al. (3), ad adapted for childre based o the expert opiios of the members of the WHO workig group o PPC. It cosists of a set of safe, effective, iexpesive, off-patet ad widely available medicies, simple ad iexpesive equipmet, ad basic social supports, which together ca prevet ad relieve sufferig of all types physical, psychological, social ad spiritual (Table 5). It also icludes the huma resources eeded to apply them appropriately, effectively ad safely ad to accompay patiets ad families throughout the course of the illess. Medicies The list of medicies i the EP Ped is based o the WHO Model List of Essetial Medicies for Childre (45) ad adapted for this documet. Medicies were selected based o the followig criteria: they are ecessary to prevet or relieve the specific symptoms or types of sufferig most commo i childre with serious, complex or life-threateig health problems; the safe prescriptio or admiistratio requires a level of professioal competecy achievable by doctors, cliical officers, assistat doctors or urse aaesthetists with basic traiig i palliative care; ad withi its class of medicies, they offer the best balace betwee accessibility o the world market, cliical effectiveess, safety, ease of use ad low cost. Morphie ad other opioids Morphie, i oral fast-actig ad ijectable preparatios, is the most cliically importat of the essetial palliative care medicies (45). It must be accessible i the proper form ad dose by ay patiet with termial dyspea or with moderate or severe pai that is either acute, chroic ad associated with maligacy, or chroic i a patiet with a termial progosis. Opioids should ot be first-lie treatmet for chroic pai outside of cacer, palliative ad ed-of-life care, except uder special circumstaces ad with strict moitorig (46). Morphie, i both ijectable ad oral fast-actig formulatios, should be accessible by prescriptio at every referral, provicial ad district hospital, ad oral fast-actig morphie should be accessible by prescriptio at CHCs uless there is a serious ad uavoidable risk of diversio of cotrolled medicies from CHCs. All doctors who ever care for patiets with moderate or severe pai of the types described, or for patiets with termial dyspea, should be adequately traied ad legally empowered to prescribe oral ad ijectable morphie for ipatiets ad outpatiets i ay dose ecessary to provide adequate relief as determied by the patiets. Doctors iexperieced at prescribig morphie ca be traied adequately with the curriculum i basic PPC described i this documet or with similar curricula (Aex 5). Doctors also should be eabled to prescribe a adequate supply of morphie so that obtaiig refills is feasible for families without requirig ureasoably frequet, expesive or arduous travel. Wheever cliically possible, oral morphie rather tha the ijectable form should be prescribed. All doctors should be traied to assess ad treat opioid side-effects ad to avoid ijudicious use of morphie for mild pai or chroic o-maligat pai. I some coutries, it may be possible for specially traied urses to provide opioid therapy safely ad effectively. 25

34 Itegratig palliative care ad symptom relief ito paediatrics Table 5. EP Ped: itervetios, medicies, equipmet, huma resources ad social supports Itervetios Iputs Social supports Medicies a Equipmet Huma resources b Prevetio ad relief of pai or other physical sufferig, d acute or chroic Amitriptylie, oral Bisacodyl (sea), oral Dexamethasoe, oral ad ijectable Diazepam, oral ad ijectable Diphehydramie (chlorpheiramie, cyclizie, or dimehydriate), oral ad ijectable Flucoazole, oral Fluoxetie (sertralie or citalopram), oral (>8 years old) Pressure-reducig mattresses Nasogastric draiage ad feedig tubes Uriary catheters Opioid lock boxes Flashlights with rechargeable batteries (if o access to electricity) Diapers (baby ad adult) or cotto ad plastic Doctors (with basic palliative care traiig) Nurses (with basic palliative care traiig) CHWs (if available) Furosemide, oral ad ijectable Haloperidol, oral ad ijectable Hyoscie butylbromide, oral ad ijectable Ibuprofe (aproxe, diclofeac, or meloxicam), oral (>3 moths old) Lactulose (sorbitol or polyethylee glycol), oral Loperamide, oral Metaclopramide, oral ad ijectable (>1 moth old) Metroidazole, oral, to be crushed for topical use Morphie, oral immediate release ad ijectable Naloxoe, ijectable Omeprazole, oral Odasetro, oral ad ijectable f (>1 moth old) Oxyge Paracetamol, oral Petroleum jelly 26

35 A WHO guide for plaers, implemeters ad maagers Prevetio ad relief of psychological sufferig, e acute or chroic Prevetio ad relief of social sufferig, acute or chroic Prevetio ad relief of spiritual sufferig a Icome ad ikid support c Amitriptylie, oral Dexamethasoe, oral ad ijectable Diazepam, oral ad ijectable Diphehydramie (chlorpheiramie, cyclizie or dimehydriate), oral ad ijectable Fluoxetie (sertralie or citalopram), oral Haloperidol, oral ad ijectable Lactulose (sorbitol or polyethylee glycol), oral Based o WHO 2017 (45). Acceptable alterative medicies are i paretheses: ( ) Diapers (baby ad adult) or cotto ad plastic Doctors (with basic palliative care traiig) Nurses (with basic palliative care traiig) Social workers, psychologists, or grief cousellors CHWs (if available) Social workers CHWs ad/or voluteers (if available) Local spiritual cousellors b Doctors may be paediatricias, geeral practitioers, family practitioers, surgeos, aaesthesiologists, itesivists, eoatologists, ifectious disease specialists, palliative care specialists, cliical officers, or others. Nurses may iclude urse-aaesthetists. c Oly for patiets livig i extreme poverty ad for oe caregiver per patiet. Icludes cash trasfers to cover housig, childre s school tuitio, trasportatio to health care facilities or fueral costs; food packages; ad other i-kid support (blakets, sleepig mats, shoes, soap, toothbrushes, toothpaste). d Other physical sufferig icludes breathlessess, weakess, ausea, vomitig, diarrhoea, costipatio, pruritus, bleedig, wouds ad fever. e f Psychological sufferig icludes axiety, depressed mood, cofusio or delirium, demetia ad complicated grief. Oly i hospitals that provide cacer chemotherapy or radiotherapy. Sources: Kaul et al (3); Krakauer et al (22). 27

36 Itegratig palliative care ad symptom relief ito paediatrics Balace: maximizig access to opioids for medical use/miimizig risk of diversio ad illicit use Although esurig access to morphie for ayoe i eed is imperative, it also is ecessary to take reasoable precautios to prevet diversio ad o-medical use. Model guidelies for this purpose are available (47). All hospitals, health cetres ad pharmacies should store morphie ad other cotrolled medicies i a sturdy, locked ad well-achored box or cupboard at all times, keep records of the remaiig supply ad record the amout dispesed for a patiet ad the amout wasted or retured by a patiet s family. All persoel at these sites who hadle cotrolled medicies such as opioids should be traied i safe storage ad recordkeepig ad i local regulatios o cotrolled medicies. Doctors should be traied to assess for ad miimize risk of opioid depedece ad opioid diversio for o-medical uses. I keepig with the priciple of balacig maximum accessibility of opioids for medical uses with miimum risk of opioid diversio, additioal precautios might be ecessary i areas with high rates of crime or violece. For example, it might ot be possible to make morphie safely accessible at the commuity level i areas with high crime rates. I these places, accessibility must be esured at higher levels i ways that do ot uduly icrease the travel burde for patiets families. Where home or cliic supplies of morphie are frequetly stole, or patiets ad their families are put at risk by carryig or storig morphie, patiets eedig morphie might require admissio to a hospital. No-opioid medicies Amog the other essetial palliative medicies are oral ad ijectable haloperidol ad oral fluoxetie or aother selective serotoi reuptake ihibitor (SSRI). Although these medicies are cosidered psychiatric or psychotropic medicies, they have multiple essetial uses i palliative care ad are safe ad easy to prescribe. For example, haloperidol is the first-lie medicie i may cases for relief of ausea, vomitig, agitatio, delirium ad axiety. A SSRI, such as fluoxetie, is the first-lie pharmacotherapy for depressed mood or persistet axiety i childre older tha eight years. Ay doctor should be prepared ad permitted to prescribe these medicies ot solely psychiatrists or eurologists. Patiets with more severe psychiatric illesses, such as psychotic or bipolar disorders, should be referred for specialist psychiatric care wheever possible. Petroleum jelly is essetial for dressig o-healable wouds. Wet-to-dry dressigs typically cause pai or bleedig whe chaged ad ca be avoided by applyig petroleum jelly to dressigs. Metroidazole powder, made by crushig metroidazole pills, is essetial to reduce or elimiate the odor of ay woud ifected with aaerobic bacteria. The powder ca be sprikled o the woud or mixed with petroleum jelly or hydrogel dressigs. Equipmet Equipmet i the EP Ped meets the followig criteria. It is: ecessary for the relief of at least oe type of physical or psychological sufferig; iexpesive, ad simple to use with basic traiig. The equipmet icludes asogastric tubes (for vomitig refractory to medicies ad for admiistratio of medicies or fluids); uriary catheters (to maage bladder dysfuctio or outlet obstructio); foam, water or air pressure-reducig mattresses (to prevet ad relieve pressure ulcers ad pai); locked safe-boxes for opioids (to be secured to a wall or immovable object); flashlights with rechargeable batteries (whe o adequate light source is available for octural home care); ad baby ad adult diapers or cotto ad plastic bags to make diapers (to reduce risk of ski ulceratio ad ifectio ad caregiver risk ad burde). I coutries where plastic bags are prohibited as part of laudable evirometal protectio iitiatives, 28

37 A WHO guide for plaers, implemeters ad maagers specialized medical use should be permitted. The EP Ped does ot iclude materials eeded for palliative care that should be stadard equipmet for ay health cetre or hospital such as gauze ad tape for dressig wouds, osterile examiatio gloves, syriges ad agiocatheters. Huma resources ad traiig The ecessary huma resources deped primarily o the level ad type of the health service delivery site ad o the competecy i PPC of staff members rather tha their professioal desigatios. Ay medical doctor, cliical officer or assistat doctor traied i basic palliative care usig a curriculum such as that icluded i this documet should be capable of prevetig or relievig most pai ad other physical sufferig (Aex 5). They should be able to competetly prescribe opioids such as morphie to treat pai for ipatiets ad outpatiets. They also should be able to diagose ad provide pharmacotherapy as eeded for ucomplicated axiety disorders, depressio or delirium. Not oly doctors, urses, psychologists ad social workers, but also CHWs ca be traied to provide simple, culturally appropriate psychotherapy for depressio ad bereavemet support (48 51). Nurse-aaesthetists traied i basic palliative care ad urse practitioers with advaced palliative care traiig also may be able to provide these services i some settigs. Nurses at CHCs ca have a crucial role i supervisig CHWs who provide palliative care, i providig palliative care that does ot etail prescribig medicies ad i triagig patiets who may require attetio from a doctor. Midwives ca have a crucial role i providig palliative care for critically ill eoates ad emotioal support for the parets. Their ability to prescribe medicies depeds o their level of traiig ad o local licesig laws. However, they ca be traied to recogize moderate or severe distress i eoates ad to trasport patiets i eed of palliative care to the earest health cetre or other facility capable of providig it. Cliicias traied i basic PPC occasioally may ecouter physical or psychological sufferig for which they feel icapable of providig adequate treatmet, ad referral for specialized PPC may ot be possible i some settigs. Examples may iclude pai refractory to high-dose morphie, depressio refractory to maximum dose SSRI or psychotic disorders. However, if referral for appropriate specialist care is ot possible, the a cliicia with palliative care traiig should use whatever resources are available, icludig a palliative care hotlie or other type of telemedicie, to provide the best possible care uder the circumstaces rather tha refuse to treat. CHWs ca have a crucial role i palliative care ad symptom cotrol by visitig patiets ad families frequetly at home ad by helpig them to avigate the local health care system. With as little as three to six hours of traiig i palliative care, existig CHWs ot oly ca provide importat emotioal support, but also recogize ucotrolled symptoms, idetify ufulfilled basic eeds for food, shelter or clothig or improper use of medicatios, ad report their fidigs to a urse-supervisor at a health cetre (Aex 5). I this way, they ca accompay patiets i eed of palliative care ad their families ad help to assure their comfort by servig as the eyes ad ears of their cliicias. Based o reports by CHWs, it may be possible to arrage a appropriate respose to a ucotrolled symptom such as a chage i prescriptio or a home visit by a urse that does ot require the patiet to retur to the hospital or health cetre. Visits by CHWs also ca help to reduce the ofte heavy emotioal, physical ad fiacial burde of family caregivers. Capable family caregivers should be traied, equipped ad ecouraged by cliicias to provide basic ursig care such as woud ad mouth care ad medicie admiistratio. But care should be take to assess for umet social eeds of family caregivers who typically are wome, ofte also have work ad other child-care resposibilities, ad ofte live i poverty. Cliicias should routiely ask patiets with serious or life-limitig health problems or their families if they desire spiritual cousellig. Every effort should be made to facilitate access to spiritual cousellig by local voluteers that is appropriate to the beliefs ad eeds of the patiet ad family. 29

38 Itegratig palliative care ad symptom relief ito paediatrics Social support Social support for patiets ad family caregivers livig i extreme poverty is eeded to esure that their most basic eeds are met such as food, housig ad trasport to medical care, ad to promote digity. This support should iclude, as appropriate, basic food packages, cash paymets for housig or school fees, trasportatio vouchers for visits to cliics or hospitals for the patiet ad a caregiver, ad i-kid support such as blakets, sleepig mats, shoes, soap, toothbrushes ad toothpaste. These social supports help to esure that patiets ca access ad beefit from medical care ad should be accessible by ay patiet, ot oly those i eed of palliative care or symptom cotrol. Oe additioal social support that should be accessible for families livig i extreme poverty is locally adequate fueral costs. Culturally appropriate burial ca be a major fiacial burde for families, ad iability to provide a fueral ca become a chroic emotioal burde. Augmetig the EP Ped The EP Ped icludes oly the miimum set of basic medicies, equipmet, social supports ad huma resources that should be accessible by all patiets ad families i eed. It should ot be cosidered sufficiet to meet all palliative care or symptom relief eeds. Depedig o the budget of humaitaria respose orgaizatios ad the type of health emergecy or crisis, the EP Ped may be augmeted i various ways. Medicies ad other treatmets: paediatric (liquid) formulatios of paracetamol, ibuprofe, morphie ad diazepam; topical lidocaie or other local aaesthetic oitmet: for prevetig pai from procedures; fetayl, ijectable: for prevetig pai from brief procedures or dressig chages ad for itraveous aalgesia i patiets with real failure; fetayl trasdermal patches: for patiets with moderate or severe cacer pai or pai ear the ed of life who are uable to take oral medicies or who have real failure; slow-actig oral morphie: for patiets with moderate or severe cacer pai or pai ear the ed of life who ca take oral medicies; midazolam, ijectable: for moderate sedatio prior to paiful procedures ad for palliative sedatio for itractable distress of a dyig patiet; hydrogel, topical: for dressig healable wouds; ad access to palliative cacer treatmets (radiotherapy, chemotherapy): for patiets with icurable cacers. Equipmet: wheelchairs ad caes: to improve mobility ad reduce burde for family caregivers. Huma resources: palliative care specialist physicia: for patiets with particularly complex symptom cotrol problems; child life specialist: to help childre cope with illess, disability or loss of family members; ad physical therapist: for ijured patiets ad patiets with disabilities. 30

39 A WHO guide for plaers, implemeters ad maagers Itervetios for specific patiet populatios Dyig patiets I some cases, it is difficult to discer whe a child is dyig. For patiets who may still beefit from diseasemodifyig or life-sustaiig treatmet, every effort should be made to obtai this treatmet i combiatio with palliative care. Whe life-sustaiig treatmet is deemed more harmful tha beeficial for a patiet, or whe it is o loger desired by the patiet ad family, it is essetial that the patiet ot be abadoed but rather receive comfort-orieted treatmet to prevet ad relieve sufferig ad maximize quality of life. Failure to provide this service is medically ad ethically idefesible. The child should be placed i as quiet ad private a locatio as possible ad provisio made for the family to be preset. The progostic uderstadig of the patiet or family should be getly explored ad corrected as eeded ad as culturally appropriate. Bad ews should be coveyed i a maer appropriate for patiet s developmetal stage ad for the patiet s ad family s culture ad history. It should be made clear that there is ever a itetio to haste death but that every effort ca be made to esure comfort at all times. Itesive efforts must be made to relieve pai ad other symptoms. Comfort-orieted care sometimes requires a itesity ad igeuity that rivals critical care. I additio, patiets ad family members should have access to psychological first aid, defied by WHO as a humae, supportive respose to a fellow huma beig who is sufferig ad who may eed support. It etails basic, o-itrusive pragmatic care with a focus o listeig but ot forcig talk, assessig eeds ad cocers, esurig that basic eeds are met, ecouragig social support from sigificat others ad protectig from further harm (52). Ay doctor should be prepared ad permitted to provide o-specialized psychological care that icludes psychological first aid ad prescriptio of psychotropic medicies for priority, ucomplicated metal health coditios. Comprehesive WHO guidelies o traiig o-specialized providers (e.g. doctors, urses) i the assessmet, maagemet ad referral of priority metal health coditios are available ad should be icluded i palliative care traiig curricula (Aex 5) (53). For bereaved adults ad childre who do ot have a metal disorder, it is recommeded to follow geeral priciples of care such as commuicatio, mobilizig ad providig social support ad attetio to overall well-beig, to offer psychological first aid ad ecourage ad facilitate participatio i culturally appropriate mourig practices (52,53). Bereavemet support groups led by adequately traied persoel may be helpful (54). Some itervetios ca be provided safely ad effectively by CHWs with basic traiig (51). Voluteer spiritual supporters should be sought to provide culturally appropriate spiritual support if requested by the patiet or family. Protei eergy malutritio Efforts to rescue severely malourished childre should be combied with palliative care to maximize their comfort ad to provide psychosocial support for the family. Treatmet of adverse effects of re-feedig, such as vomitig ad diarrhoea, may ot oly provide comfort, but also improve survival. The pai or dyspea of dyig childre should be relieved ad their parets emotioally supported. Neoates Neoates ad babies have the highest death rate i the paediatric populatio. All preverbal childre are vulerable because of their iability to commuicate their sufferig. However, critically ill eoates are particularly vulerable because, i may places, eoatal itesive care uits offer oly life-sustaiig treatmet ad o palliative care. The two are ot mutually exclusive: critical care ad palliative care ca ad should be itegrated to maximize the comfort of patiets who may survive, ad that of their parets. I HICs, palliative care is recommeded for eoates bor at extremely low birth weight (less tha

40 Itegratig palliative care ad symptom relief ito paediatrics kilograms) ad those bor before 23 weeks of gestatio. I settigs where state-of-the-art eoatal itesive care is ot accessible, babies bor after loger gestatio or at higher birth weight may ot survive ad should receive palliative care. I ay settig, palliative care: should be provided for childre bor with a life-limitig abormality or malformatio; should be iitiated immediately for family support whe a life-limitig abormality or malformatio is discovered durig pregacy or at birth ad i case of a stillbirth (psychological, social ad spiritual support); should be itegrated with itesive illess-modifyig or life-sustaiig treatmets for critically ill eoates; should be the oly type of care whe itesive illess-modifyig or life-sustaiig treatmets will be more burdesome tha beeficial ad therefore will be withheld or withdraw; should assist with decisio-makig about beefits ad burdes of itesive illess-modifyig or lifesustaiig treatmets for critically ill eoates; ad should make bereavemet support accessible as eeded after a stillbirth or the death of ay eoate or child. Whe a life-limitig fetal aomaly is diagosed durig pregacy, or whe a stillbirth occurs, a midwife or traditioal birth attedat ca play a importat role i providig palliative care. They ca provide emotioal support ad advise the parets o: spedig time with their dyig baby, or holdig a stillbor baby; makig photographs or hadprits ad footprits that ca become cherished memories ad assist the bereavemet process; ad orgaizig baptisms, wakes or other rituals. Obstetrical, eoatal ad palliative care policies ad procedures should guide the palliative care roles of midwives ad traditioal birth attedats. They should receive basic traiig i PPC ad be welcomed as members of palliative care teams. 32

41 A WHO guide for plaers, implemeters ad maagers 33

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43 A WHO guide for plaers, implemeters ad maagers Implemetig PPC ad symptom relief Part 1. Itegratig PPC ito health care systems ad structures WHO recommeds a public health strategy for itegratig palliative care ito health care systems i a cost-effective maer to reach all i eed (4,55). Iclusio of palliative care i atioal health care policies is crucial. Without policies that madate palliative care services, it is ulikely that PPC will become widely accessible or sustaiable. I geeral, the first steps towards itegratio of PPC ito health care systems should be: a atioal palliative care policy that requires access for all specifically icludig childre to palliative care ad to pai cotrol with opioid pai medicies; a atioal palliative care strategic pla to create this access withi a certai time period; ad iclusio of PPC i ay atioal policies or strategic plas o cacer, ocommuicable diseases (NCDs), paediatrics, HIV/AIDS, drug-resistat tuberculosis or primary health care (PHC). Oce such policies ad strategic plas are i place, efforts ca focus o esurig accessibility of all essetial medicies ad equipmet, icludig oral fast-actig ad ijectable morphie, ad o traiig (Chapter 6). Durig these efforts, PPC traiig programmes should be developed. However, if policies do ot precede traiig, most traiees may be uable to practise PPC ad may ot be paid for doig so. Traiig ca be iitiated at a basic level either for primary care physicias or physicias whose specialties etail carig frequetly for childre with serious or life-threateig health problems. Physicias who complete basic palliative care traiig should be empowered to prescribe oral fast-actig ad ijectable morphie for ipatiets ad outpatiets. As soo as possible after implemetig basic palliative care traiig for physicias, other palliative care traiig programmes should be established: itermediate-level traiig should be implemeted for physicias whose specialties etail carig frequetly for childre with serious or life-threateig health problems; basic palliative care traiig for practisig urses; ad itegratio of basic traiig i palliative care, icludig PPC, ito udergraduate medical, ursig ad pharmacy traiig. Next, or simultaeous with essetial medicie procuremet ad traiig, PPC services should be itegrated ito existig service delivery. This ca begi at ay level of the health care system. However, it may be easiest to implemet PPC where the eed is most obvious to most staff members: i cacer cetres. Iitial services ca be a ipatiet ward, a cosultatio service or a outpatiet cliic. Natioal policies should require PPC services at all cacer cetres ad, withi a period of time, at all levels of the health care system: secod- ad third-level hospitals (provicial, regioal ad specialty hospitals); first-level (district) hospitals; CHCs; ad home care. A basic pla for itegratig palliative care i geeral ad PPC i particular ito health care systems is described i Table 6. This pla ca be used for palliative care policies. I LMICs, serious or life-threateig health coditios typically are diagosed at secod- ad third-level hospitals, ad treatmet usually is 35

44 Itegratig palliative care ad symptom relief ito paediatrics iitiated there. Thus, palliative care services should be accessible i these istitutios to provide iitial symptom cotrol, to maitai symptom cotrol durig treatmet ad to prepare a pla to keep the patiet comfortable after discharge to a lower-level facility or to home. Whe treatmet at a secod- ad thirdlevel hospital is ot eeded or ot appropriate ad whe the patiet s symptoms are ot complex or refractory to treatmet, palliative care ca be iitiated ad home care plas made at a first-level hospital. I most cases, home care services based at the patiet s local CHC should be able to provide follow-up care after the patiet s symptoms have bee cotrolled ad a palliative care pla made at higher level. I rare cases of severe refractory sufferig, a patiet may require ed-of-life ipatiet care at a first-, secod- or third-level hospital. Examples iclude o-viable premature eoates with respiratory failure or patiets with severe, refractory pai due to ed-stage cacer. I cases where the patiet s symptoms ca be well-cotrolled but where the family lacks the ability to care adequately for the patiet at home, the CHC should offer ipatiet ed-of-life care to a maximum of oe or two patiets at a time. I most cases, however, the patiet should be able to remai at home with follow-up surveillace by a CHW ad follow-up care as eeded i the home, at the CHC or at the palliative care outpatiet cliic of the district (first-level) hospital. It is crucial the atioal health care policies specify the types of palliative care services that must be implemeted at each level of health care systems ad also specify the traiig that each type of palliative care provider should have at each level. Table 6. Palliative care itervetios, delivery platforms ad providers Itervetio Delivery platform Mobile outreach/ home care CHC First-level (district) hospitals Secod- ad thirdlevel (provicial, regioal, specialty) hospitals Ogoig care for patiets with wellcotrolled symptoms related to serious or life-limitig health problems CHWs provide surveillace ad emotioal support as ofte as daily Visits as eeded by urse, doctor or social worker from the CHC with basic traiig i palliative care Nurse ad possibly also a doctor or social worker with basic traiig i palliative care provide outpatiet care ad possibly home visits as eeded Ipatiet hospice care i some cases if the family is uable to provide adequate care at home Small palliative care team icludig oe or two parttime doctors with basic or itermediate traiig i palliative care Ipatiet hospice care if the family is uable to provide adequate care at home ad if o ipatiet care is available at CHCs Outpatiet palliative care cliic 36

45 A WHO guide for plaers, implemeters ad maagers Iitial cotrol of moderate or severe symptoms related to serious, complex or life-limitig health problems Cotrol of refractory sufferig Small palliative care team icludig oe or two parttime doctors with basic or itermediate traiig i palliative care Ipatiet palliative care Outpatiet palliative care cliic Palliative care team cosistig of full- or part-time doctors with itermediate traiig i palliative care Ideally, a palliative care specialist physicia should lead the team at major cacer cetres ad geeral hospitals Ipatiet palliative care ward Outpatiet palliative care cliic Source: Adapted from Krakauer et al (22). The recommeded trasfer patters for patiets i eed of palliative care are outlied i Figure 5. I geeral, patiets whose health coditios already have bee diagosed ad who eed palliative care are referred oly to the ext higher or lower level as appropriate. However, there are several exceptios to this rule: Patiets at secod- or third-level hospitals whose symptoms have bee well cotrolled ad who wish to retur home for palliative home care should be trasferred directly to home ad the case iformatio trasmitted to the local CHC i charge of home care. Patiets who are at home or who are see at a CHC ad foud to have severe, complex or refractory sufferig that caot be adequately relieved i the commuity may be trasferred directly to a firstlevel hospital. However, if the patiet already is kow at a secod- or third-level hospital, the the patiet may be trasferred directly to that hospital. I all istaces, case iformatio should be trasmitted to the receivig hospital. I settigs where a ipatiet hospice exists, patiets may be trasferred there from ay level of the health care system, ad case iformatio should be trasmitted. I settigs where a sub-acute care facility or ursig home is available, patiets with ucomplicated health problems ad well-cotrolled symptoms may be trasferred there from ay level of the health care system, ad case iformatio should be trasmitted. It is crucial that palliative care providers at each level of the health care system be able to commuicate easily ad reliably with providers at ay other level at all times. For example: a CHW must be able to reach a urse or supervisor at the CHC quickly at ay time to report a problem with a patiet; a provider at a CHC must be able to reach a supervisor at the district level quickly at ay time for advice o a complicated case; ad 37

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47 A WHO guide for plaers, implemeters ad maagers Part 2. Models of palliative care delivery Withi the geeral pla for itegratig palliative care ito health care systems described i Part 1 of this chapter, various models will be ecessary to fit the structure of the health care system i a give coutry ad the strategic plas of the coutry s MOH, ad to assure that all patiets i eed of palliative care will have access to it (Table 7). For example: i some settigs, a home care model that etails mobile palliative care teams based at district or commuity levels ad frequet telephoe check-is with the patiet or family by telephoe may supplat a model that relies o CHWs; ad i some hospitals, a strog ad active palliative care cosultatio service that works closely with lik urses i each ward with basic palliative care traiig may obviate the eed for a ipatiet palliative care ward (Textbox 2). Table 7. Models of palliative care delivery Locatio Home care Outpatiet cliic Ipatiet care hospital Ipatiet care hospice Day care Services By staff members of a CHC with or without CHWs: Family members, frieds or commuity voluteers provide most care with support from CHWs or voluteers who visit frequetly ad report to a urse at the CHC A urse (ad sometimes also a doctor) from the CHC visits as eeded ad/or at regular itervals A visitig urse may be able to deliver medicies i some settigs A urse with advaced traiig or a doctor may be able to prescribe a opioid durig a home visit By a mobile team: A team typically cosistig at least of a doctor ad urse visits at regular itervals ad whe called by the patiet or family. I some settigs, team members may be able to prescribe ad/or deliver medicies icludig opioids Palliative care cliics may be based at CHCs or at hospitals of ay level The cliic at a CHC would hadle oly simple palliative care problems, while the most complex problems should be addressed at the cliic of a third-level hospital where the most highly traied palliative care cliicias should work Cliics at all hospitals should have cliicias able to prescribe morphie for outpatiets, ad all hospitals pharmacies should stock oral fast-actig ad ijectable morphie Cosultatio model: Physicias traied i palliative care provide advice to the patiet s resposible physicia who the decides how to implemet the advice Ipatiet uit model: A room or ward devoted etirely to palliative care ad staffed oly by physicias ad urses traied i palliative care A house, hospital or hospital ward devoted etirely to ed-of-life care ad staffed by a IDT that icludes physicias ad urses traied i palliative care A locatio staffed by a urse ad CHWs or voluteers where patiets receivig palliative care who are able to walk or travel by wheelchair ca sped the day uder supervisio to eable family members to work or have respite time 39

48 Itegratig palliative care ad symptom relief ito paediatrics Box 2. Ipatiet palliative care services at Mulago Natioal Referral Hospital, Ugada At Mulago Natioal Referral Hospital i Ugada, a palliative care lik urse programme was established. Nurses throughout the hospital, i both adult ad paediatric uits, were traied to provide basic palliative care ad to refer patiets with complex eeds to the hospital s specialist palliative care team. As a result, the umber of patiets receivig palliative care icreased dramatically. The majority (86%) required oly basic palliative care from a lik urse, ad 14% were referred for specialist palliative care. This programme demostrated itegratio of palliative care ito geeralist services, esured that geeralist palliative care provisio was accessible to all i eed throughout the hospital ad reached a far greater umber of patiets tha could be see by the specialist team aloe. It also esured that those receivig specialist care were those with the greatest complexity of eed (56). Part 3. Traiig i palliative care ad symptom relief The 2014 World Health Assembly resolutio WHA67.19 o palliative care urges each Member State to itegrate ito its health care educatio system three levels of palliative care traiig (Aex 4) (4): 1. Basic traiig ad cotiuig educatio i palliative care should be itegrated as a routie elemet of all udergraduate medical ad ursig professioal educatio, ad as part of i-service traiig of caregivers at the primary care level, icludig health care workers, caregivers addressig patiets spiritual eeds ad social workers. 2. Itermediate traiig i palliative care should be offered to all health care workers who routiely work with patiets with life-threateig illesses, icludig those workig i ocology, ifectious diseases, paediatrics, geriatrics ad iteral medicie. 3. Specialist palliative care traiig should be available to prepare health care professioals who will maage itegrated care for patiets with more tha routie symptom maagemet eeds. Basic traiig i palliative care of approximately 35 hours should be icluded i all curricula of medical schools ad ursig schools (Aex 5). The traiig may be offered either as a discrete course i the last year of medical or ursig school or itegrated ito other courses throughout the curriculum. For example, traiig o pai ca be itegrated ito a course o the ervous system, ad traiig o patiet cliicia commuicatio ca be itegrated ito courses o psychiatry or medical ethics. The traiig should iclude both classroom ad bedside teachig. Basic palliative care traiig also should be provided for all primary care cliicias uless their resposibilities preclude cotact with patiets i eed of palliative care. Itermediate-level palliative care traiig, lastig approximately 70 hours, should be itegrated ito specialist traiig curricula i all fields that etail treatig patiets with serious or life-threateig illesses. I additio to paediatrics, ocology, ifectious diseases, geriatrics ad iteral medicie, these iclude haematology, critical care, family medicie, tuberculosis, hepatology, eurology, cardiology, pulmoology, ephrology, eoatology, traumatology, aaesthesiology ad surgery. The traiig should cosist of both classroom teachig ad hads-o, supervised cliical experieces. Specialists i these fields, who work maily i hospitals, should be prepared to provide direct palliative care to their patiets. I additio, the physicias who work full- or part-time o hospital-based palliative care teams should have at least itermediate-level palliative care traiig. 40

49 A WHO guide for plaers, implemeters ad maagers As soo as possible, palliative care IDTs at secod- ad third-level hospitals should be led by palliative care specialist physicias. Thus, LMICs should work to develop palliative care specialist traiig programmes that ca supply palliative care specialist physicias for their coutry or regio. Specialist traiig programmes should last at least oe year but will vary accordig to each coutry s postgraduate medical traiig regulatios. Although it is best if cliicias providig PPC are fully traied i paediatrics ad provide care oly for childre, geeralist cliicias such as geeral practitioers, family doctors ad primary care urses ca ad should be traied ad competet to provide PPC wheever paediatric specialists are ot eeded or ot available. Basic ad itermediate-level palliative care traiig aims ot at specializatio but rather at essetial competecies (57). Geeral domais of competecy i palliative care iclude: priciples of palliative care commuicatio optimizig comfort ad quality of life care plaig ad collaborative practice loss, grief ad bereavemet professioal ad ethical practice i the cotext of palliative care professioal resiliece. Essetial competecies i PPC are described i Table 8. Geeralists providig PPC should be able to obtai advice by telephoe at ay time from a paediatricia with itermediate-level palliative care traiig or a palliative care specialist physicia. Such task shiftig ad task sharig is especially crucial i rural areas. Table 8. Essetial competecies i PPC Key competecy Key compoets Paediatric symptom assessmet (pai ad o-pai) Use age-specific methods to assess symptoms such as pai, ausea, dyspea, axiety, depressio, etc. Appropriate medicatio selectio, dosig ad admiistratio Psychosocial assessmet ad itervetio (patiet ad family) Implemet age ad weight-based dosig with attetiveess to paediatric metabolism ad excretio Use o-opioid, opioid ad adjuvat therapies aliged with WHO priciples; iclude appropriate use of scheduled alog with as-eeded doses for breakthrough pai Create/dissemiate pharmacologic ad o-pharmacologic treatmet pla to iclude emergecy pla; place emergecy medicatios i the home with traiig for caregivers Refer to higher level for more specialized palliative care whe eeded Idetify ad address the child s ad family s illess uderstadig, fears ad cocers, icludig those of sibligs Assure child ad family they will ot be abadoed Idetify child s ad family s copig ad commuicatio styles ad adjust care pla accordigly Commuicate with child i a developmetally appropriate fashio Getly explore previous experieces with death, dyig, other traumatic life evets or special issues such as substace abuse or suicidal ideatio, ad adjust care pla to miimize further psychosocial stress Use play therapy such as music, storybooks, art for expressio, reflectio ad distractio. Recogize impact of child s illess o larger commuity (faith groups, school, etc.) offer to family to help commuicate with school or commuity agecies Assess family s resources for bereavemet support; make bereavemet follow-up pla as eeded 41

50 Itegratig palliative care ad symptom relief ito paediatrics Disease trajectory recogitio Developmetally iformed ad cotextappropriate commuicatio Decisio-makig ad advace care plaig Spiritual cocers as part of care Goals of care Support tagible eeds Cosider how maifestatios ad trajectory of disease may differ from adults ad betwee childre of differet ages Provide developmetally appropriate aticipatory guidace regardig physical chages ad symptom burde to decrease child s fear of the ukow Explore child ad family emotios ad behaviours Use play, art or storytellig to explore child s experiece Truth-tell i a maer appropriate to patiet s developmet, cliical situatio ad cotext Recogize that childre grieve, worry about their family members ad fear burdeig their family members Iclude the patiet i decisio-makig as appropriate for the patiet s values, culture ad developmetal stage Adjust care pla accordig to culture, copig ad commuicatio styles Hoour relevat ethical priciples, cultural orms ad legal guidelies as appropriate Idetify key decisio-makers ad provide iformatio as ecessary Cosider referral to a appropriate spiritual care provider Offer to assist i explaiig child s illess to spiritual provider, with permissio Allow time for reflectio o life meaig ad purpose Determie whether the goal of care is cure, maiteace of curret level of health, comfort, or mixed Whe the goals of care preclude itesive life-sustaiig treatmet, write orders to protect the patiet from cardiopulmoary resuscitatio or other itervetios icosistet with the goal of care Develop care pla with the patiet ad/or family that itegrates awareess of patiet symptoms ad disease trajectory with desires ad goals of patiet ad family Provide guidace o best locatio of care (home, hospital, hospice) to achieve agreedupo goals of care Offer ad arrage as much assistace as may be eeded ad as possible such as: medical equipmet (wheelchair, cae, suctio, commode, hospital bed for the home) social supports (food packages, cash trasfers for ret or school tuitio, trasportatio vouchers, i-kid support) commuity services (visits from CHWs, urses, mobile palliative care teams) Source: Himelstei et al (58). 42

51 A WHO guide for plaers, implemeters ad maagers Various curricula i PPC are available ad may be adapted for use i ay coutry (Table 9). Care should be take whe adaptig a curriculum from a HIC to esure it is as relevat as possible to the local cliical ad cultural situatio. For example, it should discuss oly medicies i the EP Ped ad those that are accessible or may soo become accessible i the coutry. Table 9. Paediatric palliative care (PPC) curricula Educatio i Palliative ad Ed-of-life Care (EPEC Pediatrics) Developed for the Uited States ad HICs. The curriculum cosists of 19 olie distace-learig modules ad 5 i-perso face-to-face coferece sessios. Iteratioal Childre s Palliative Care Network (ICPCN) e-learig programme Developed i South Africa, iteded for both professioals ad lay people who participate i palliative care for childre. A cliical site where childre s palliative care is beig practised is required so that the learer ca udertake the cliical assessmet which forms part of the course. Ed-of-Life Nursig Educatio Cosortium-Pediatric Palliative Care (ELNEC-PPC) Developed for the Uited States ad HICs. Adapted from the ELNEC-Core curriculum to meet the eeds of childre ad their families. The 10 modules iclude periatal ad eoatal cotet. Harvard Medical School Ceter for Palliative Care, Global Program, Pediatric Palliative Care Curriculum for Lowresource Settigs Developed for Viet Nam ad LMICs. Ca be dowloaded ad adapted to local cliical ad cultural situatios. Give that most care for childre with serious or life-threateig health coditios is provided by family members ad at home, basic, patiet-specific traiig should be provided to family caregivers. The traiig should be provided by a urse from the local CHC or from a mobile palliative care team. It may iclude medicie admiistratio, woud care, safe feedig, ifectio cotrol, avoidig bur-out, ad whe ad how to request help. Materials for traiig family caregivers also are available (Table 10). Table 10. Traiig materials for family caregivers Istitute of Palliative Medicie (Calicut, Kerala, Idia) Palliative care: a workbook for carers Developed for Idia ad other LMICs. Home-based Palliative Care Traiig ad Support Package for Youg Childre i Souther Africa Developed i South Africa, a traiig ad support package to guide home ad commuity-based care workers to help caregivers of seriously ill youg childre at home i Souther Africa. Cotact: saicker@hsrc.ac.za 43

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55 A WHO guide for plaers, implemeters ad maagers Esurig access to essetial medicies Strog opioids such as morphie are essetial for the treatmet of pai caused by cacer, HIV/AIDS ad other serious illesses ad due to traumatic ijuries, burs ad surgery. Yet despite beig icluded o the WHO Model List of Essetial Medicies for both adults ad childre, morphie has ot bee accessible at all times i adequate amouts, i the appropriate dosage forms, with assured quality ad adequate iformatio, ad at a price the idividual ad the commuity ca afford (45,59). Of the world s populatio, 75% lacks access to morphie or aother strog opioid whe cliically idicated to treat pai. WHO estimates that 5.5 millio termial cacer patiets ad 1 millio ed-stage HIV/AIDS patiets worldwide suffer each year without adequate treatmet for moderate to severe pai. Iteratioal drug regulatory bodies, such as the Iteratioal Narcotics Cotrol Board (INCB), have ackowledged that their emphasis historically has bee o restrictig opioid misuse ad abuse, rather tha o esurig the medical availability of opioids (60). Yet the Uited Natio s Sigle Covetio o Narcotic Drugs, which virtually all atios have siged, states that atios must both miimize the risk of abuse ad diversio of opioids ad esure their availability for medical ad scietific purposes (61). This dual obligatio of govermets is called the priciple of balace, a priciple that has bee affirmed by WHO (62,63), the Uited Natios Commissio o Narcotic Drugs ad the Uited Natios Geeral Assembly. Govermets should esure that all physicias ivolved i patiet care are both legally permitted ad istitutioally authorized to prescribe ad admiister strog opioids such as morphie accordig to the medical eeds of patiets. Govermets also should esure that a sufficiet supply of morphie is available to meet all medical eeds. While misuse of cotrolled substaces poses a risk to society, the system of cotrol is ot iteded to be a barrier to their availability for medical ad scietific purposes, or iterfere i their legitimate medical use for patiet care. To fulfil the requiremets of the Sigle Covetio ad of acceptable medical practice, every effort should be made to idetify the barriers to opioid availability withi each coutry. Typically, these barriers iclude: overly restrictive regulatios o opioid prescribig ad dispesig; iadequate educatio of doctors, urses ad pharmacists i pai cotrol ad the appropriate use of opioids; ad lack of uderstadig of the appropriate use of opioids amog drug regulators who ofte focused oly o the reducig the risk of misuse ad abuse ad ot at all o makig these medicies available. Examples of overly restrictive regulatios iclude (64): a requiremet that physicias purchase special opioid prescriptio pads; a requiremet that all opioid prescriptios for outpatiets be siged ot oly by the prescribig physicia, but also by a supervisor or a aaesthesiologist; permittig oly specifically desigated physicias to prescribe opioids; permittig oly specialist physicias to prescribe opioids ad ot geeral practitioers or family doctors; restrictig opioids to ipatiets or to patiets receivig hospice services; limits o opioid dose; limits o opioid prescriptios ad dispesig to less tha a 30-day supply whe risk of diversio is miimal; ad restrictig family practitioers ad geeral practitioers from prescribig them. 47

56 Itegratig palliative care ad symptom relief ito paediatrics All health systems establish a system to moitor the flow of opioids from import or maufacture to use by the patiet (65). I the ipatiet settig, there should be verificatio of opioids take by the patiet. I the outpatiet settig, there should be verificatio of opioids haded over by a pharmacist or cliicia to the patiet or to a family member o behalf of the patiet, mius ay amout retured to the pharmacy or cliicia by the patiet or family. Such a system should ot iterfere with access to opioids for medical uses but rather esure cotiued availability of these medicies. So-called stock-outs ad other supply chai failures result i patiets sufferig both from opioid withdrawal symptoms ad from pai ad ca icrease the risk of illicit opioid use ad suicide too (66). The Sigle Covetio requires all coutries to report aual opioid cosumptio to the INCB. Together with other health statistics, this reportig is crucial for estimatig a coutry s expected opioid eed the followig year ad for the INCB to officially allocate the amout eeded (67). The INCB has defied various methods for coutries to calculate their expected eed. Icreases i allocatio from oe year to the ext ca be requested based o, for example, expected improvemets i health care services or o revised estimates of disease prevalece. The INCB uses the pooled estimates from all coutries to esure that the appropriate quatity of opioids is available globally. 48

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59 A WHO guide for plaers, implemeters ad maagers Itegratio of palliative care ad symptom relief ca stregthe health care systems ad promote UHC Improved quality of life Palliative care has bee associated with improved patiet outcomes, with fiacial risk protectio for patiets ad their families ad with reduced costs for health care systems (3). Improved patiet outcomes iclude better cotrol of pai ad other symptoms, decreased spiritual distress, ehaced quality of life, improved patiet ad family satisfactio, ad reduced umber of physicia office visits, emergecy departmet visits, hospitalizatios ad days i the itesive care uit at the ed of life (68,69). These improvemets ted to be greatest whe palliative care is iitiated early i the course of illess (69). I some cases, provisio of palliative care has bee associated with prologed survival (70). Less data are available o outcomes of palliative care for childre tha for adults. However, PPC has bee associated with improvemets i healthrelated quality of life, emotioal well-beig ad family satisfactio (40,43,71). Thus, evidece idicates that itegratio of palliative care eables health care systems to better achieve their missio of improvig the well-beig of those they serve. Improved treatmet outcomes Palliative care should ot be cosidered oly as a alterative to curative or life-sustaiig treatmets of dubious beefit, but also as a essetial complemet to curative or disease-modifyig treatmets for serious or life-threateig health coditios. Adherece to curative or disease-modifyig treatmets ca be difficult whe symptoms of the disease or adverse effects of the treatmet are ot preveted or adequately relieved. Thus, palliative care may improve adherece particularly to toxic treatmets such as those for drug-resistat tuberculosis ad may cacers (72). Amog the global poor, poverty ad other social problems also commoly make adherece difficult. I LMICs, treatmet abadomet the failure to start or complete medically idicated curative therapy is a major cause of therapeutic failure i potetially curable childhood cacers (73). Specific reasos for treatmet abadomet have bee foud to iclude fiacial difficulties as well as distress caused by side-effects ad by poor relatioships with health care workers (74). PPC could ameliorate all of these problems. Social supports such as those described i Chapter 4 also have bee show to reduce treatmet abadomet ad improve a patiet s ability to adhere to treatmet (74 76). Thus, palliative care ot oly ca improve patiets comfort, but also stregthe the ability of health care systems to effectively treat their serious ad life-threateig coditios. Lower costs for health care systems ad fiacial risk protectio for families I may coutries, patiets ad their families bear most of the burde of carig for patiets with serious or life-threateig health problems. I additio to the ofte extreme emotioal stress, families of medically ill childre ofte experiece profoud social ad ecoomic burdes, icludig isolatio, loss of icome ad catastrophic health care spedig. Family caregivers, who usually are wome or childre, may be uable to work, go to school or participate i social activities because of the demads of caregivig. Whe patiets go to the hospital i low-icome settigs, a family caregiver ofte must leave icome-geeratig activities, school or caregivig for other childre to accompay the patiet. This puts patiets families at risk of fiacial rui ad caregivers at risk of exhaustio ad health problems of their ow (22,77,78). 51

60 Itegratig palliative care ad symptom relief ito paediatrics Multiple studies from HICs idicate that palliative care ca reduce costs for patiets ad families, as well as for health systems (79 83). Palliative care etworks that iclude commuity-based care ad home care, as described i Chapter 4 ca eable patiets to remai at home ad comfortable rather tha retur to a hospital for symptom relief. They also may reduce demad for expesive disease-modifyig treatmets of dubious beefit ear the ed of life by providig a compassioate alterative ad supportive cousellig, ad they ca reduce the legth of stay for patiets already i the hospital by makig symptom cotrol accessible i the commuity. Families thereby are spared the costs of uecessary admissios to the hospital, icludig trasportatio for the patiet ad caregiver to the hospital, hospital co-paymets ad lodgig costs for the family caregiver. Because the family caregiver ca remai at home ad may be able to work at least part-time, there also may be less loss of icome. Caregivers who are childre may also be able to remai i school (84 89). Palliative care itegratio also ca reduce costs for health care systems. As populatios age, ad as the prevalece of chroic NCDs rises, a icreasig percetage of the health care budget is beig spet o hospital ipatiet care ear the ed of life that icreasigly icludes aggressive disease-modifyig treatmets or life-sustaiig treatmets of doubtful medical beefit (86,90). Palliative care itegrated ito health care systems at all levels ad icludig home care ca reduce health care costs by decreasig uecessary or o-beeficial resource utilizatio (86). Rather tha spedig the last days, weeks or moths of life i hospitals, patiets ca receive care at home or i the commuity that is less expesive ad yields better outcomes. I additio, overcrowdig i secod- ad third-level hospitals ca be reduced. Thus, palliative care ca help health care systems produce better results at lower cost (22). A additioal beefit for health care systems ad for public health ca accrue from cost-effective palliative home care. CHWs, urses from CHCs ad mobile palliative care team members who visit patiets at home ca do more tha palliative care. Home visits provide a opportuity for may other primary prevetio ad screeig itervetios, icludig: teachig about smokig cessatio, idoor air quality, diet ad exercise; ecouragig preatal care, childhood vacciatios, cervical cacer screeig ad HIV prevetio ad testig; ad tuberculosis ad cacer case-fidig. Thus, creatig or ehacig home care capacity for palliative care also ca stregthe capacity for disease prevetio ad early diagosis. I additio, the commuicatio liks betwee each level of health care systems that are ecessary for palliative care ca be used to reduce loss to follow-up. Staff members of hospital-based services, such as cacer chemotherapy or specialist cliics, ca iform CHCs of impedig appoitmets, ad CHWs ca the remid patiets ad ucover ay impedimets to the patiet s ability to keep the appoitmet i time for CHC staff to fid a solutio. Promotio of UHC I 2015, Uited Natios Geeral Assembly resolutio 70/1 established the Sustaiable Developmet Goals (SDGs) (91). SDG 3 aims to esure healthy lives ad promote well-beig for all at all ages, ad SDG 3.8 is about achievig UHC, icludig fiacial risk protectio, access to quality essetial health care services ad access to safe, effective, quality ad affordable essetial medicies ad vaccies for all. Palliative care exists to atted to, accompay ad esure the well-beig of those with serious or life-threateig health problems whose health care eeds exceed disease treatmet. Thus, palliative care is essetial to the achievemet of SDG 3 ad UHC. WHO specifically metios palliative care i its defiitio of UHC: The UHC meas that all idividuals ad commuities receive the health services they eed without sufferig fiacial hardship. It icludes the full spectrum of essetial, quality health services, from health promotio to prevetio, treatmet, rehabilitatio ad palliative care (92). 52

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63 A WHO guide for plaers, implemeters ad maagers Research ad quality improvemet i paediatric palliative care To develop high-quality, cost-effective palliative care services for childre, research ad quality improvemet iitiatives are much eeded (93 95). The 2014 World Health Assembly resolutio WHA67.19 o palliative care asserts the importace of evidece-based palliative care (Aex 4) (4). Likewise, WHO has called for research o evidece gaps idetified durig developmet of the WHO Guidelies o the pharmacological treatmet of persistig pai i childre with medical illesses (96,97). Curretly, however, there is a dearth of evidece o PPC, especially from LMICs where the vast majority of patiets i eed are located. There are a variety of sigificat barriers to research i palliative care i geeral, especially i LMICs (29,94,98 100). These iclude: difficulty i idetifyig useful ad researchable outcome measures; lack of research fudig; absece of atioal ad istitutioal research strategies; lack of a research ifrastructure ad culture i LMICs, icludig adequate ad timely research ethics approval processes; ad lack of research skills ad overwhelmig patiet load i LMICs. While all efforts are eeded to reduce or elimiate all barriers, this chapter focuses o research priorities for PPC. A wide rage of atioal ad global priorities for research i PPC have bee proposed, icludig studies of (95, ): palliative care eeds of childre i specific locatios (situatio aalyses); relative effectiveess of itervetios for pai ad other symptoms (95); cliical outcomes such as quality of life; effectiveess of traiig o palliative care-related kowledge ad attitudes; existece ad degree of implemetatio of palliative care policy; optimum models of care; trust i health care providers; ethical issues; ad cost ad cost-effectiveess of palliative care. Palliative care eeds assessmet or situatio aalysis To desig palliative care services that provide optimum beefit for a specific populatio, the most commo ad most severe types of sufferig must be kow. Whe o such data exist o the target populatio, palliative care situatio aalyses should assess all categories of sufferig: physical; psychological; social; ad spiritual. The target populatio may be small or large. It may be just oe commuity, cliic populatio or hospital ( ), or it may be a etire regio or coutry (108,109). The situatio aalysis may use multiple detailed surveys (109), or it may use oly oe short survey. Ideally, data o types of sufferig should be collected directly from patiets rather tha from family members or cliicias. However, because very youg childre are uable to participate i surveys, data must be obtaied either from family members 55

64 Itegratig palliative care ad symptom relief ito paediatrics or usig validated tools for assessig symptoms i preverbal or liguistically impaired childre (110,111). Older childre who are i severe discomfort or ear the ed of life ofte are uable to participate i log surveys. Thus, there is a beefit to usig very cocise surveys that evertheless address all types of sufferig. Oe example is the Palliative Outcomes Scale that exists i several forms for various populatios ad has bee validated i several laguages (112,113). This istrumet ca yield useful iformatio both for researchers ad for cliicias. It is brief eough to be icorporated ito routie hospital or cliic forms for recordig patiet history ad physical examiatio, ad these forms, whether electroic or hardcopy, ca be used both for palliative care situatio aalysis ad quality assurace assumig appropriate research ethics regulatios are followed (105). Desig of optimum palliative care services for a populatio also depeds o uderstadig of commo cultural ad religious coceptios of illess, treatmet ad death, ad of commo attitudes towards health care providers ad the health care system ( ). I additio, childre s attitudes towards illess, treatmet ad death chage alog with their physical, emotioal, psychological ad spiritual developmet, ad all people s attitudes are iflueced by persoal experiece (120). Thus, research is eeded o treds i what childre with serious or life-threateig illesses ad their families experiece i specific geopolitical, cultural, religious ad ecoomic cotexts. Attitudes of health care providers at all levels towards palliative care also warrats ivestigatio. For example, irratioal fear of prescribig opioids is commo ad commoly results i poor care ad outcomes (121). If such opiophobia is discovered, it ca be addressed through educatio. Optimum PPC treatmets There is a eed for research to assess the effectiveess of palliative care treatmets i geeral, ad the eed for such studies i childre is eve greater. Studies of the safety ad relative effectiveess of palliative medicies i childre are difficult for may reasos, icludig the relatively small umber of potetial research subjects, the iability of childre to provide iformed coset ad the ecessary ethical guidelies to protect vulerable subjects i additio to the barriers to palliative care research cited above. However, WHO has proposed detailed ad raked priorities for research o medical maagemet of persistig pai i childre (Table 11). 56

65 A WHO guide for plaers, implemeters ad maagers Table 11. WHO priorities for research o pharmacologic treatmet of persistig pai i childre with medical illesses First group of priorities Assessmet of two-step treatmet strategy. Research o alterative strog opioids to morphie (comparative trials of opioids i terms of effectiveess, side-effects ad feasibility of use). Research o itermediate potecy opioid aalgesics (e.g. tramadol). Log-term safety data cocerig first-step medicies (ibuprofe/paracetamol). Secod group of priorities (europathic pai) Atidepressats, specifically tricyclic atidepressats ad selective serotoi reuptake ihibitors ad ewer atidepressats of the class of serotoi ad orepiephrie reuptake ihibitors for persistig europathic pai i childre. Gabapeti for persistig europathic pai i childre. Ketamie as a adjuvat to opioids for refractory europathic pai i paediatric patiets with logterm medical illess. Third group of priorities Radomized cotrolled trials (RCTs) o alterative routes to the oral route of opioid admiistratio (icludig RCTs comparig subcutaeous ad itraveous routes). Fourth group of priorities Update Cochrae reviews o opioid switchig icludig paediatric data, if available. Radomized cotrolled trials o opioid switchig ad research o dose coversio i differet age groups. Radomized cotrolled trials o short-actig opioids for breakthrough pai i childre. Other areas for research ad developmet Research ad psychometric validatio of observatioal behaviour measuremet tools for persistig pai settigs (eoates, ifats, preverbal ad cogitively impaired childre). Prospective cliical trials to ivestigate opioid rotatio protocols ad their efficacy i prevetig sideeffects or opioid tolerace ad dose escalatio. Developmet of divisible, dispersible, oral solid-dosage forms of paracetamol ad ibuprofe. Research ito appropriate formulatios for the extemporaeous preparatio of oral liquid morphie. Dissemiatio of available evidece o the preparatio of stable extemporaeous formulatios. Child-appropriate oral solid dosage forms of opioid aalgesics. Research o equiaalgesic dosages i coversio of opioid aalgesics for differet age groups. Source: WHO 2012 (97). Ogoig data collectio o PPC itegratio, accessibility, quality ad outcomes The degree of itegratio of PPC ito a health care system, ad its accessibility, may be assessed with a few output measures such as those developed by WHO for its periodic survey of NCD coutry capacity aroud the world (122). Such a study might explore: whether govermet fudig is provided for PPC; whether there is a atioal policy that icludes PPC ad whether a atioal policy o paediatrics icludes palliative care; 57

66 Itegratig palliative care ad symptom relief ito paediatrics whether such policies are operatioal, uder developmet or ot i effect; whether oral morphie is available i over 50% of the ipatiet ad outpatiet paediatric care facilities of the public health sector; whether palliative care is accessible by over 50% of paediatric patiets i the public health system; ad whether palliative home care is accessible by over 50% of paediatric patiets i the public health system. To periodically assess the quality ad outcomes of PPC, the same istrumets used for palliative care situatio aalyses ca ofte be used.where feasible, however,who edorses health techology assessmets (HTA) to systematically evaluate the properties, effects ad/or impacts of health itervetios (Figure 6) (123). HTA covers both the direct, iteded cosequeces of itervetios ad their idirect, uiteded cosequeces. The approach is used to iform policy ad decisio-makig i health care, especially o how best to allocate limited fuds to health itervetios. The assessmet is coducted by iterdiscipliary groups usig explicit aalytical frameworks, drawig o cliical, epidemiological, health ecoomic ad other iformatio ad methodologies. It may be applied to itervetios, such as icludig home care i public health isurace coverage, rollig out broad public health programmes such as palliative care, priority settig i health care, idetifyig health itervetios that produce the greatest health gai ad offer value for moey, ad formulatig cliical guidelies (Aexes 6 ad 7). Figure 6. Health techology assessmet: a tool to iform decisio-makers i support of UHC Health systems Fragile states HTA, defie Essetial services Emergecy kits Disaster plaig Low-icome coutries with low coverage HTA, defie Primary health care packages Middle-icome coutries with low coverage HTA, defie Guarateed packages of care Strog health system HTA, defie Margial aalysis for additios to packages Cotiuum of HTA activities Source: WHO 2018 (123). All providers of PPC, whatever the care settig, should be committed to cotiuous improvemet of the quality of their services. Data collected from quality idicators are a primary source of iformatio for improvig services. A basic framework for idicators that ca be used to assess the key domais of atioal or regioal programmes is described i Table 12. These idicators are adapted from a previous WHO guide for plaig maagers (7). 58

67 A WHO guide for plaers, implemeters ad maagers Table 12. Sample idicators for assessig ehaced access to palliative care i PHC Type of idicator Policy Idicator Existece of a curret atioal paediatrics strategy or pla that icludes palliative care pla/programme Essetial Package of Palliative Care for Paediatrics ad Symptom Relief (EP Ped) icluded i uiversal health coverage Laws ad regulatios i place for safe ad effective opioid prescribig i lie with iteratioal drug covetios at the district level? At the commuity level? Yes/No Yes/No Yes/No Uit of measure Educatio Service provisio Essetial medicies Proportio of medical schools that iclude paediatric palliative care educatio i udergraduate curricula Proportio of ursig schools that iclude paediatric palliative care educatio i udergraduate curricula Proportio of medical techical schools (for traiig cliical officers, assistat doctors, urse practitioers, or feldshers) that iclude paediatric palliative care educatio i udergraduate curricula Iclusio of paediatric palliative care o the official list of services provided at the primary care level Number of commuities that provide paediatric palliative care services Cosumptio of strog opioids per cacer death All WHO essetial medicies for palliative care icluded o the atioal list of essetial medicies Proportio of districts where oral morphie is available i primary health care Yes/No Ratio of medical schools with paediatric palliative care educatio at udergraduate level to total medical schools Ratio of ursig schools with paediatric palliative care educatio at udergraduate level to total ursig schools Ratio of medical techical schools with paediatric palliative care educatio to total medical techical schools Yes/No Ratio of umber of commuities that provide palliative care services to umber of commuities Average milligrams of oral morphie equivalets per umber of deaths Yes/No Ratio of districts with oral morphie available i primary care to total districts Outcomes Percetage of paediatric patiets who had access to palliative care at the time of death Percetage of deceased patiets that had access to paediatric palliative care. Sources: Adapted from WHO 2016 (7) ad Kaul et al (3). 59

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74 Itegratig palliative care ad symptom relief ito paediatrics 111. Merkal S, Voepel-Lewis T, Shayevitz JR, Malviya S. The FLACC: a behavioral scale for scorig postoperative pai i youg childre. Pediatr Nurs. 1997;23(3): Eisechlas JH, Hardig R, Daud ML, Pérez M, De Simoe GG, Higgiso IJ. Use of the Palliative Outcome Scale i Argetia: a cross-cultural adaptatio ad validatio study. J Pai Symptom Maage. 2008;35: Hardig R, Sherr L, Alberty R. The status of paediatric palliative care i sub-sahara Africa: a appraisal. Lodo: The Diaa Pricess of Wales Memorial Fud; Krakauer EL, Creer C, Fox K. Barriers to optimum ed-of-life care for miority patiets. J Am Geriatr Soc. 2002;50(1): Blackhall LJ, Murphy ST, Frak G, Michel V, Aze. Ethicity ad attitudes toward patiet autoomy. JAMA. 1995;274(10): Fox K. Cultural issues i pediatric care. I: Behrma RE, Kliegma R, Jeso HB, editors. Nelso textbook of pediatrics, 16th editio. Philadelphia: Sauders, Kagawa-Siger M. Diverse cultural beliefs ad practices about death ad dyig i the elderly. I: Wielad D, editor. Cultural diversity ad geriatric care. New York: Haworth Press, Klessig J. The effect of values ad culture o life-support decisios. West J Med. 1992;157: Koeig BA, Gates-Williams J. Uderstadig cultural differeces i carig for dyig patiets. West J Med. 1995;163: Aghelescu DL, Oakes L, Hids PS. Palliative care ad pediatrics. Aesthesiol Cli. 2006;24: Larue F, Colleau S, Fotaie A, Brasseur L. Ocologists ad primary care physicias attitudes toward pai cotrol ad morphie prescribig i Frace. Cacer. 1995;76(11): Sharkey L, Lorig B, Cowa M, Riley L, Krakauer EL. Natioal palliative care capacities aroud the world: results from the World Health Orgaizatio Nocommuicable Disease Coutry Capacity Survey. Palliat Med doi: / [Epub ahead of prit] Health techology assessmet: a tool to iform decisio makers i support of UHC. Geeva: World Health Orgaizatio; 2018 ( accessed 5 April 2018) Ecoomist Itelligece Uit. Global access to healthcare: buildig sustaiable health systems. Lodo: The Ecoomist; Health techology assessmet: a tool to iform decisio makers i support of UHC. Geeva: World Health Orgaizatio; 2018 ( accessed 5 April 2018). 66

75 A WHO guide for plaers, implemeters ad maagers Aexes Aex 1 Covetio o the Rights of the Child (excerpts) Adopted ad opeed for sigature, ratificatio ad accessio by Uited Natios Geeral Assembly resolutio 44/25 of 20 November 1989 Etry ito force 2 September PART I Article 3 1. I all actios cocerig childre, whether udertake by public or private social welfare istitutios, courts of law, admiistrative authorities or legislative bodies, the best iterests of the child shall be a primary cosideratio. 2. States Parties udertake to esure the child such protectio ad care as is ecessary for his or her well-beig, takig ito accout the rights ad duties of his or her parets, legal guardias, or other idividuals legally resposible for him or her, ad, to this ed, shall take all appropriate legislative ad admiistrative measures. 3. States Parties shall esure that the istitutios, services ad facilities resposible for the care or protectio of childre shall coform with the stadards established by competet authorities, particularly i the areas of safety, health, i the umber ad suitability of their staff, as well as competet supervisio. Article States Parties recogize that a metally or physically disabled child should ejoy a full ad decet life, i coditios which esure digity, promote self-reliace ad facilitate the child s active participatio i the commuity. 2. States Parties recogize the right of the disabled child to special care ad shall ecourage ad esure the extesio, subject to available resources, to the eligible child ad those resposible for his or her care, of assistace for which applicatio is made ad which is appropriate to the child s coditio ad to the circumstaces of the parets or others carig for the child. 3. Recogizig the special eeds of a disabled child, assistace exteded i accordace with paragraph 2 of the preset article shall be provided free of charge, wheever possible, takig ito accout the fiacial resources of the parets or others carig for the child, ad shall be desiged to esure that the disabled child has effective access to ad receives educatio, traiig, health care services, rehabilitatio services, preparatio for employmet ad recreatio opportuities i a maer coducive to the child s achievig the fullest possible social itegratio ad idividual developmet, icludig his or her cultural ad spiritual developmet. 4. States Parties shall promote, i the spirit of iteratioal cooperatio, the exchage of appropriate iformatio i the field of prevetive health care ad of medical, psychological ad fuctioal treatmet of disabled childre, icludig dissemiatio of ad access to iformatio cocerig 67

76 Itegratig palliative care ad symptom relief ito paediatrics methods of rehabilitatio, educatio ad vocatioal services, with the aim of eablig States Parties to improve their capabilities ad skills ad to wide their experiece i these areas. I this regard, particular accout shall be take of the eeds of developig coutries. Article States Parties recogize the right of the child to the ejoymet of the highest attaiable stadard of health ad to facilities for the treatmet of illess ad rehabilitatio of health. States Parties shall strive to esure that o child is deprived of his or her right of access to such health care services. 2. States Parties shall pursue full implemetatio of this right ad, i particular, shall take appropriate measures: (a) To dimiish ifat ad child mortality; (b) To esure the provisio of ecessary medical assistace ad health care to all childre with emphasis o the developmet of primary health care; (c) To combat disease ad malutritio, icludig withi the framework of primary health care, through, iter alia, the applicatio of readily available techology ad through the provisio of adequate utritious foods ad clea drikig-water, takig ito cosideratio the dagers ad risks of evirometal pollutio; (d) To esure appropriate pre-atal ad post-atal health care for mothers; (e) To esure that all segmets of society, i particular parets ad childre, are iformed, have access to educatio ad are supported i the use of basic kowledge of child health ad utritio, the advatages of breastfeedig, hygiee ad evirometal saitatio ad the prevetio of accidets; (f) To develop prevetive health care, guidace for parets ad family plaig educatio ad services. 3. States Parties shall take all effective ad appropriate measures with a view to abolishig traditioal practices prejudicial to the health of childre. 4. States Parties udertake to promote ad ecourage iteratioal co-operatio with a view to achievig progressively the full realizatio of the right recogized i the preset article. I this regard, particular accout shall be take of the eeds of developig coutries. Article States Parties recogize the right of every child to a stadard of livig adequate for the child s physical, metal, spiritual, moral ad social developmet. 2. The paret(s) or others resposible for the child have the primary resposibility to secure, withi their abilities ad fiacial capacities, the coditios of livig ecessary for the child s developmet. 3. States Parties, i accordace with atioal coditios ad withi their meas, shall take appropriate measures to assist parets ad others resposible for the child to implemet this right ad shall i case of eed provide material assistace ad support programmes, particularly with regard to utritio, clothig ad housig. 4. States Parties shall take all appropriate measures to secure the recovery of maiteace for the child from the parets or other persos havig fiacial resposibility for the child, both withi the State Party ad from abroad. I particular, where the perso havig fiacial resposibility for the child lives i a State differet from that of the child, States Parties shall promote the accessio to iteratioal agreemets or the coclusio of such agreemets, as well as the makig of other appropriate arragemets. 68

77 A WHO guide for plaers, implemeters ad maagers Aex 2 Sevetieth World Health Assembly resolutio WHA70.12 Cacer prevetio ad cotrol i the cotext of a itegrated approach (excerpts) 31 May 2017 The Sevetieth World Health Assembly, Havig cosidered the report aware that early diagosis ad prompt ad appropriate treatmet, icludig pai relief ad palliative care, ca reduce mortality ad improve the outcomes ad quality of life of cacer patiets; o cacer prevetio ad cotrol i the cotext of a itegrated approach; 1. URGES Member States, takig ito accout their cotext ad istitutioal ad legal frameworks, as well as atioal priorities: (10) to develop ad implemet evidece-based protocols for cacer maagemet, i childre ad adults, icludig palliative care; (15) to provide pai relief ad palliative care i lie with resolutio WHA67.19 (2014) o the stregtheig of palliative care as a compoet of comprehesive care throughout the life course; (17) to promote early detectio of patiets eeds ad access to rehabilitatio, icludig i relatio to work, psychosocial ad palliative care services; (19) to cotiue fosterig parterships betwee govermet ad civil society, buildig o the cotributio of health-related ogovermetal orgaizatios ad patiet orgaizatios, to support, as appropriate, the provisio of services for the prevetio ad cotrol, treatmet ad care of cacer, icludig palliative care; 69

78 Itegratig palliative care ad symptom relief ito paediatrics Aex 3 Child-friedly healthcare: a maual for health workers (excerpts) Child Friedly Healthcare Iitiative (CFHI) Preface This is a assessmet ad implemetatio maual about Child Friedly Healthcare (CFH) writte for health workers who pla, orgaise, provide or give care to childre ad their families. The maual defies CFH by traslatig the articles of the Uited Natios Covetio o the Rights of the Child (UNCRC) ito simple CFH Stadards that are applicable to everyday healthcare practices. It provides a method ad process for assessig these ad a simple structure for makig ay wated or eeded improvemets so that childre ad their families everywhere ca receive the best possible healthcare, regardless of circumstace. The Child Friedly Healthcare Iitiative (CFHI), a child health quality improvemet program, was developed by Childhealth Advocacy Iteratioal (CAI), Charity No: , i collaboratio with The Uited Natios Childre s Fud (UNICEF), The Child ad Adolescet Departmet of Health ad Developmet of the World Health Orgaisatio (WHO), the Royal College of Paediatrics ad Child Health (RCPCH), UK ad the Royal College of Nursig (RCN), UK. What is the best possible healthcare? The practice of CFH Stadards at their best possible level of practice. The best possible: Cosiders the child s best iterests Covers the prevetive, ivestigative, curative ad palliative aspects of health care takig ito accout the most up-to-date evidece-base for each care give Is affordable ad effective Is appropriate, takig ito accout the resources (huma ad material) ad techology available ad the eeds of other childre sharig these Is child cetred STANDARD 7: Recogisig ad relievig pai ad discomfort Health care providers, orgaisatios ad idividual health workers, share a resposibility to advocate for childre ad to reduce the fear, axiety ad sufferig of childre ad their families by esurig that they recogise, assess ad relieve the physical ad psychological pai ad discomfort of childre. Supportig criteria 1. A separate pai ad other symptom maagemet/palliative care service/s with lead health professioals ad/or multi-discipliary team/s. 70

79 A WHO guide for plaers, implemeters ad maagers 2. Systems of care, guidelies ad job aides (for example tools to assess ad relieve pai) to help with symptom recogitio, symptom assessmet ad restrait for procedures. 3. Writte guidelies, evidece based wherever possible, used by everyoe to help with symptom relief, that iclude advice o the relief of differet types of pai ad other distressig symptoms (both physical ad psychological), ad o how to use o-pharmacological ad pharmacological pai relievig strategies i the differet ages groups: 4. Material resources icludig: A safe, secure supply of free or affordable essetial drugs for symptom relief that icludes opiates ad o-opiates; Distractio toys ad other resources to aid o-pharmacological pai ad other symptom maagemet. 5. The use of idividual pai (ad other symptom) plas made with the childre ad their paret/carer. 6. Psychosocial support for childre, families ad health workers. Discussio The pilot project foud large umbers of childre i the participatig coutries sufferig from ucotrolled pai ad other distressig symptoms, both physical ad psychological. Improved techology ad potetial advaces i care do ot always protect or improve the treatmet of these distressig symptoms ad ca o occasio be a additioal cause. Routie procedures (without pai relief), such as dressig wouds are frequet causes of uecessary pai ad sufferig for a child. I some coutries it is commo for a child to be paralysed by drugs or partially sedated without cocurret ad appropriate pai relief. The State has a role to play i makig it better for childre by ot restrictig or blockig the availability of vital pai relievig drugs (icludig opiates) due to security cocers or outdated ad mistake beliefs about their appropriateess for use i childre ad misplaced cocers about risks of addictio. I coutries where opiates are available, there may be a reluctace to use them due to these misguided beliefs ad also a lack of uderstadig about how to use them. Whilst it is upsettig for health workers whe they are uable to help a distressed child, the effects o the child ad their family are much worse ad ca oly be imagied, especially if the child has a chroic illess, a termial illess or ay other lifelimitig coditio. It is ethically wrog ad a failure of a health professioal s duty for a child to suffer from ucotrolled pai or other distressig symptoms. This is particularly the case for a child who has a permaet disability that is associated with chroic symptoms or oe who caot be cured of their illess ad may be ear the ed of their life. Relievig pai ad distressig symptoms is ot always about cure, but is about makig the experiece of livig ow more bearable (that is improvig the quality of remaiig life). Improved techology ad potetial advaces i care do ot always protect or improve the treatmet of these distressig symptoms ad ca o occasio be a additioal cause. Routie procedures (without pai relief), such as dressig wouds are frequet causes of uecessary pai ad sufferig for a child. I some coutries it is commo for a child to be paralysed by drugs or partially sedated without cocurret ad appropriate pai relief. The State has a role to play i makig it better for childre by ot restrictig or blockig the availability of vital pai relievig drugs (icludig opiates) due to security cocers or outdated ad mistake beliefs about their appropriateess for use i childre ad misplaced cocers about risks of addictio. 71

80 Itegratig palliative care ad symptom relief ito paediatrics Effective relief from pai ad other distressig symptoms from birth to adulthood could be better if health workers: were more aware of the sufferig ad discomfort that all childre may experiece (icludig ewbor babies) due to pai ad other distressig symptoms; always aticipatig a child s pai ad other distressig symptoms; gave a higher priority to relievig each idividual child s pai ad other distressig symptoms; made greater use of pai ad symptom relievig drugs, both o opiates ad opiates; uderstood ad used simple o-pharmaceutical methods that ca help (supportive, cogitive, behavioural ad physical); kew about ad aticipated all the thigs that ca make the experiece of pai or other symptom worse. To make it better best practice is for health workers to have core (durig iitial traiig) ad regular educatio/traiig opportuities o the recogitio, assessmet ad treatmet of pai ad other distressig symptoms. Best possible practice is also facilitated by havig, wheever possible, separate skilled health professioals who lead ad guide the treatmet of pai ad other symptoms. Havig a multidiscipliary team dedicated to symptom relief ad other aspects of palliative care, ad usig stadardised guidelies for maagig pai ad other distressig symptoms, are kow to be effective ways of improvig care ad sharig good practice. The child s ormal health worker workig together with the child ad their carers (who kow the child best) ca ofte reduce pai ad other distressig symptoms by: plaig each idividual child s care as each child respods differetly to pai ad other distressig symptoms. aticipatig pai ad takig effective measures ad/or givig drugs before the symptoms occur, for example before a procedure or operatio. Childre with recurret distressig symptoms should ot wait for these to re-occur before receivig relief. usig pai/symptom assessmet tools to help them recogise ad assess a child s symptoms ad guide the care they eed. givig drugs i a way that does ot cause more pai ad distress. Drugs are ofte still give i a way that is paiful for the child, for example by itramuscular ijectio. The same drugs are frequetly available ad equally effective as a itraveous or oral preparatio, ofte at a lower cost. advocatig for the child s eeds to be met, if they are uable to meet these eeds themselves. Before usig drugs, or where they are uavailable there is much that ca be doe to relieve sufferig ad make a upleasat experiece more bearable, such as: beig hoest with the child ad preparig them for what might be a paiful experiece ca help them to cope. Axiety ad mistrust of health workers will make the experiece worse; usig appropriate play, stimulatio ad distractio to help i the maagemet of pai ad other symptoms; usig heat, cold, touch ad other comfort measures as these ca sometimes help the distress of pai ad other symptoms; givig psychological support, simple kidess ad ivolvig parets ad other familiar carers where possible. 72

81 A WHO guide for plaers, implemeters ad maagers Aex 4 Sixty-seveth World Health Assembly resolutio WHA67.19 Stregtheig of palliative care as a compoet of comprehesive care throughout the life course 24 May 2014 The Sixty-seveth World Health Assembly, Havig cosidered the report o stregtheig of palliative care as a compoet of itegrated treatmet throughout the life course; 1 Recallig resolutio WHA58.22 o cacer prevetio ad cotrol, especially as it relates to palliative care; Takig ito accout the Uited Natios Ecoomic ad Social Coucil s Commissio o Narcotic Drugs resolutios 53/4 ad 54/6 respectively o promotig adequate availability of iteratioally cotrolled licit drugs for medical ad scietific purposes while prevetig their diversio ad abuse, ad promotig adequate availability of iteratioally cotrolled arcotic drugs ad psychotropic substaces for medical ad scietific purposes while prevetig their diversio ad abuse; Ackowledgig the special report of the Iteratioal Narcotics Cotrol Board o the availability of iteratioally cotrolled drugs: esurig adequate access for medical ad scietific purposes, 2 ad the WHO guidace o esurig balace i atioal policies o cotrolled substaces: guidace for availability ad accessibility of cotrolled medicies; 3 Also takig ito accout resolutio 2005/25 of the Uited Natios Ecoomic ad Social Coucil o treatmet of pai usig opioid aalgesics; Bearig i mid that palliative care is a approach that improves the quality of life of patiets (adults ad childre) ad their families who are facig the problems associated with life-threateig illess, through the prevetio ad relief of sufferig by meas of early idetificatio ad correct assessmet ad treatmet of pai ad other problems, whether physical, psychosocial or spiritual; Recogizig that palliative care, whe idicated, is fudametal to improvig the quality of life, well-beig, comfort ad huma digity for idividuals, beig a effective perso-cetred health service that values patiets eed to receive adequate, persoally ad culturally sesitive iformatio o their health status, ad their cetral role i makig decisios about the treatmet received; Affirmig that access to palliative care ad to essetial medicies for medical ad scietific purposes maufactured from cotrolled substaces, icludig opioid aalgesics such as morphie, i lie with the three Uited Natios iteratioal drug cotrol covetios, 4 cotributes to the realizatio of the right to the ejoymet of the highest attaiable stadard of health ad well-beig; Ackowledgig that palliative care is a ethical resposibility of health systems, ad that it is the ethical duty of health care professioals to alleviate pai ad sufferig, whether physical, psychosocial or spiritual, irrespective of whether the disease or coditio ca be cured, ad that ed-of-life care for idividuals is amog the critical compoets of palliative care; 1 Documet 67/31. 2 Documet E/INCB/2010/1/Supp.1. 3 Esurig balace i atioal policies o cotrolled substaces: guidace for availability ad accessibility of cotrolled medicies. Geeva: World Health Orgaizatio; Uited Natios Sigle Covetio o Narcotic Drugs, 1961, as ameded by the 1972 Protocol; Uited Natios Covetio o Psychotropic Substaces, 1971; Uited Natios Covetio agaist Illicit Traffic i Narcotic Drugs ad Psychotropic Substaces,

82 Itegratig palliative care ad symptom relief ito paediatrics Recogizig that more tha 40 millio people curretly require palliative care every year, foreseeig the icreased eed for palliative care with ageig populatios ad the rise of ocommuicable ad other chroic diseases worldwide, cosiderig the importace of palliative care for childre, ad, i respect of this, ackowledgig that Member States should have estimates of the quatities of the iteratioally cotrolled medicies eeded, icludig medicies i paediatric formulatios; Realizig the urget eed to iclude palliatio across the cotiuum of care, especially at the primary care level, recogizig that iadequate itegratio of palliative care ito health ad social care systems is a major cotributig factor to the lack of equitable access to such care; Notig that the availability ad appropriate use of iteratioally cotrolled medicies for medical ad scietific purposes, particularly for the relief of pai ad sufferig, remais isufficiet i may coutries, ad highlightig the eed for Member States, with the support of the WHO Secretariat, the Uited Natios Office o Drugs ad Crime ad the Iteratioal Narcotics Cotrol Board, to esure that efforts to prevet the diversio of arcotic drugs ad psychotropic substaces uder iteratioal cotrol pursuat to the Uited Natios iteratioal drug cotrol covetios do ot result i iappropriate regulatory barriers to medical access to such medicies; Takig ito accout that the avoidable sufferig of treatable symptoms is perpetuated by the lack of kowledge of palliative care, ad highlightig the eed for cotiuig educatio ad adequate traiig for all hospital- ad commuity-based health care providers ad other caregivers, icludig ogovermetal orgaizatio workers ad family members; Recogizig the existece of diverse cost-effective ad efficiet palliative care models, ackowledgig that palliative care uses a iterdiscipliary approach to address the eeds of patiets ad their families, ad otig that the delivery of quality palliative care is most likely to be realized where strog etworks exist betwee professioal palliative care providers, support care providers (icludig spiritual support ad cousellig, as eeded), voluteers ad affected families, as well as betwee the commuity ad providers of care for acute illess ad the elderly; Recogizig the eed for palliative care across disease groups (ocommuicable diseases, ad ifectious diseases, icludig HIV ad multidrug-resistat tuberculosis), ad across all age groups; Welcomig the iclusio of palliative care i the defiitio of uiversal health coverage ad emphasizig the eed for health services to provide itegrated palliative care i a equitable maer i order to address the eeds of patiets i the cotext of uiversal health coverage; Recogizig the eed for adequate fudig mechaisms for palliative care programmes, icludig for medicies ad medical products, especially i developig coutries; Welcomig the iclusio of palliative care actios ad idicators i the WHO comprehesive global moitorig framework for the prevetio ad cotrol of ocommuicable diseases ad i the global actio pla for the prevetio ad cotrol of ocommuicable diseases ; Notig with appreciatio the iclusio of medicies eeded for pai ad symptom cotrol i palliative care settigs i the 18th WHO Model List of Essetial Medicies ad the 4th WHO Model List of Essetial Medicies for Childre, ad commedig the efforts of WHO collaboratig cetres o pai ad palliative care to improve access to palliative care; Notig with appreciatio the efforts of ogovermetal orgaizatios ad civil society i cotiuig to highlight the importace of palliative care, icludig adequate availability ad appropriate use of iteratioally cotrolled substaces for medical ad scietific purposes, as set out i the Uited Natios iteratioal drug cotrol covetios; 74

83 A WHO guide for plaers, implemeters ad maagers Recogizig the limited availability of palliative care services i much of the world ad the great avoidable sufferig for millios of patiets ad their families, ad emphasizig the eed to create or stregthe, as appropriate, health systems that iclude palliative care as a itegral compoet of the treatmet of people withi the cotiuum of care, 1. URGES Member States: 5 to develop, stregthe ad implemet, where appropriate, palliative care policies to support the comprehesive stregtheig of health systems to itegrate evidece-based, costeffective ad equitable palliative care services i the cotiuum of care, across all levels, with emphasis o primary care, commuity ad home-based care, ad uiversal coverage schemes; to esure adequate domestic fudig ad allocatio of huma resources, as appropriate, for palliative care iitiatives, icludig developmet ad implemetatio of palliative care policies, educatio ad traiig, ad quality improvemet iitiatives, ad supportig the availability ad appropriate use of essetial medicies, icludig cotrolled medicies for symptom maagemet; to provide basic support, icludig through multisectoral parterships, to families, commuity voluteers ad other idividuals actig as caregivers, uder the supervisio of traied professioals, as appropriate; to aim to iclude palliative care as a itegral compoet of the ogoig educatio ad traiig offered to care providers, i accordace with their roles ad resposibilities, accordig to the followig priciples: (a) basic traiig ad cotiuig educatio o palliative care should be itegrated as a routie elemet of all udergraduate medical ad ursig professioal educatio, ad as part of i-service traiig of caregivers at the primary care level, icludig health care workers, caregivers addressig patiets spiritual eeds ad social workers; (b) itermediate traiig should be offered to all health care workers who routiely work with patiets with life-threateig illesses, icludig those workig i ocology, ifectious diseases, paediatrics, geriatrics ad iteral medicie; (c) specialist palliative care traiig should be available to prepare health care professioals who will maage itegrated care for patiets with more tha routie symptom maagemet eeds; to assess domestic palliative care eeds, icludig pai maagemet medicatio requiremets, ad promote collaborative actio to esure adequate supply of essetial medicies i palliative care, avoidig shortages; to review ad, where appropriate, revise atioal ad local legislatio ad policies for cotrolled medicies, with referece to WHO policy guidace, 6 o improvig access to ad ratioal use of pai maagemet medicies, i lie with the Uited Natios iteratioal drug cotrol covetios; 5 Ad, where applicable, regioal ecoomic itegratio orgaizatios. 6 Esurig balace i atioal policies o cotrolled substaces: guidace for availability ad accessibility of cotrolled medicies. Geeva: World Health Orgaizatio;

84 Itegratig palliative care ad symptom relief ito paediatrics to update, as appropriate, atioal essetial medicies lists i the light of the recet additio of sectios o pai ad palliative care medicies to the WHO Model List of Essetial Medicies ad the WHO Model List of Essetial Medicies for Childre; to foster parterships betwee govermets ad civil society, icludig patiets orgaizatios, to support, as appropriate, the provisio of services for patiets requirig palliative care; to implemet ad moitor palliative care actios icluded i WHO s global actio pla for the prevetio ad cotrol of ocommuicable diseases ; 2. REQUESTS the Director-Geeral: to esure that palliative care is a itegral compoet of all relevat global disease cotrol ad health system plas, icludig those relatig to ocommuicable diseases ad uiversal health coverage, as well as beig icluded i coutry ad regioal cooperatio plas; to update or develop, as appropriate, evidece-based guidelies ad tools o palliatio, icludig pai maagemet optios, i adults ad childre, icludig the developmet of WHO guidelies for the pharmacological treatmet of pai, ad esure their adequate dissemiatio; to develop ad stregthe, where appropriate, evidece-based guidelies o the itegratio of palliative care ito atioal health systems, across disease groups ad levels of care, that adequately address ethical issues related to the provisio of comprehesive palliative care, such as equitable access, perso-cetred ad respectful care, ad commuity ivolvemet, ad to iform educatio i pai ad symptom maagemet ad psychosocial support; to cotiue, through WHO s Access to Cotrolled Medicies Programme, to support Member States i reviewig ad improvig atioal legislatio ad policies with the objective of esurig balace betwee the prevetio of misuse, diversio ad traffickig of cotrolled substaces ad appropriate access to cotrolled medicies, i lie with the Uited Natios iteratioal drug cotrol covetios; to explore ways to icrease the availability ad accessibility of medicies used i palliative care through cosultatio with Member States ad relevat etworks ad civil society, as well as other iteratioal stakeholders, as appropriate; to work with the Iteratioal Narcotics Cotrol Board, the Uited Natios Office o Drugs ad Crime, health miistries ad other relevat authorities i order to promote the availability ad balaced cotrol of cotrolled medicies for pai ad symptom maagemet; to further cooperate with the Iteratioal Narcotics Cotrol Board to support Member States i establishig accurate estimates i order to eable the availability of medicies for pai relief ad palliative care, icludig through better implemetatio of the guidace o estimatig requiremets for substaces uder iteratioal cotrol; 7 7 Iteratioal Narcotics Cotrol Board, World Health Orgaizatio. Guide o estimatig requiremets for substaces uder iteratioal cotrol. New York: Uited Natios;

85 A WHO guide for plaers, implemeters ad maagers to collaborate with UNICEF ad other relevat parters i the promotio ad implemetatio of palliative care for childre; to moitor the global situatio of palliative care, evaluatig the progress made i differet iitiatives ad programmes i collaboratio with Member States ad iteratioal parters; to work with Member States to ecourage adequate fudig ad improved cooperatio for palliative care programmes ad research iitiatives, i particular i resource-poor coutries, i lie with the Programme budget , which addresses palliative care; to ecourage research o models of palliative care that are effective i low- ad middle-icome coutries, takig ito cosideratio good practices; to report back to the Sixty-ith World Health Assembly i 2016 o progress i the implemetatio of this resolutio. 77

86 Itegratig palliative care ad symptom relief ito paediatrics Aex 5 Sample curricula i paediatric palliative care Sample A: Basic curriculum for traiig doctors, cliical officers, assistat doctors urse practitioers Day Paediatric palliative care basic traiig course: goals ad ageda Slide presetatio 1.2 Epidemiology of serious ad life-threateig health problems amog childre i the coutry Slide presetatio 1.3 Paediatric palliative care: defiitio, priciples, accessibility, ad moral imperative Slide presetatio/large group discussio 1.4 Ethical issues ad patiet doctor commuicatio i paediatric palliative care Slide presetatio/large group discussio 1.5 Palliative care assessmet i childre Slide presetatio 1.6 Growth ad developmet of childre i eed of palliative care Slide presetatio 1.7 Helpig childre cope i medical settigs Slide presetatio/large group discussio Day Pai assessmet ad treatmet i childre Slide presetatio 2.2 No-pharmacologic approaches to pai relief i childre Slide presetatio 2.3 Preparig childre for medical procedures Slide presetatio 2.4 Paediatric pai cases Small group discussio Day Dyspea assessmet ad treatmet Slide presetatio/case discussio 3.2 Nausea/vomitig assessmet ad treatmet Slide presetatio 78

87 A WHO guide for plaers, implemeters ad maagers 3.3 Costipatio/diarrhoea assessmet ad treatmet Slide presetatio 3.4 Psychological distress i seriously ill childre: depressio, axiety, isomia Slide presetatio 3.5 Altered metal status: delirium i childre Slide presetatio Day Talkig with parets ad childre about serious illess Presetatio/large group discussio 4.2 Loss, grief ad bereavemet Slide presetatio/large group discussio 4.3 Psychosocial sufferig ad support Slide presetatio/large group discussio 4.4 Role play: Psychosocial support Small group role play 4.5 Health care worker resiliece ad self-care Short lecture ad large group discussio 4.6 Memorial ceremoy Group activity Day Optimum use of life-sustaiig treatmet Slide presetatio/large group discussio 5.2 Complex medical ad ethical issues i carig for a dyig child Large group case discussio 5.3 Curret state of paediatric palliative care i the coutry Slide presetatio 5.4 Palliative care strategic plaig: What ca you do i your home istitutio? Group work ad discussio Fial examiatio Source: Global Program of Harvard Medical School Ceter for Palliative Care ad Massachusetts Geeral Hospital, Sample B: Basic curriculum for traiig urses 79

88 Itegratig palliative care ad symptom relief ito paediatrics Day What is palliative care? Defiitio ad priciples Lecture/discussio 1.2 Palliative care situatio i the coutry Lecture/discussio 1.3 The palliative care team Lecture/discussio 1.4 Roles of urses i palliative care Lecture/discussio 1.5 Nursig ethics i palliative care Lecture/discussio 1.6 Palliative care assessmet ad approach to the patiet Lecture/discussio/role play Day Priciples of pai maagemet Lecture/discussio 2.2 Side-effects of pai medicies Lecture/discussio 2.3 Istructig patiets ad family caregivers o correct use of morphie Lecture/discussio 2.4 Subcutaeous ijectio ad ifusio procedures Lecture/demostratio 2.5 Pai cotrol cases Small group discussio Day Dyspea: assessmet ad maagemet Lecture/discussio 3.2 Dyspea case Small group discussio 3.3 Wouds, oedema ad ski problems: assessmet ad maagemet Lecture/discussio/demostratio 3.4 Nausea/vomitig: assessmet ad maagemet Lecture/discussio 80

89 A WHO guide for plaers, implemeters ad maagers 3.5 Costipatio/diarrohea: assessmet ad maagemet Lecture/discussio 3.6 Other symptoms: loss of appetite, cachexia, fever Lecture/discussio 3.6 GI symptom cases Small group discussio Day Psychological/psychiatric problems: assessmet ad maagemet Lecture/discussio 4.2 Agitated patiet case Large group discussio 4.3 Patiet urse relatioship, commuicatio, ad breakig bad ews Lecture/discussio 4.4 Discussig diagosis ad progosis with patiet or family Small group role play 4.5 Loss, grief, bereavemet Lecture/discussio 4.6 Emotioal support for dyig patiets ad their families Lecture/discussio/role play 4.7 Health care worker self-care Lecture/discussio/group activity Day Barriers to pai relief i the coutry Lecture/discussio 5.2 Implemetig palliative care ursig i participats home istitutios Lecture/group work/discussio Fial examiatio Sources: Uiversity of Medicie & Pharmacy at Ho Chi Mih City, Viet Nam, ad Global Program of Harvard Medical School Ceter for Palliative Care at Massachusetts Geeral Hospital,

90 Itegratig palliative care ad symptom relief ito paediatrics Sample C: Basic curriculum for traiig commuity health workers (CHWs) 4 Hours: 8 sessios of 30 miutes 1. What is palliative care? Brief presetatio/sharig of experieces with icurable illess i family/frieds 2. Commuity health workers resposibilities to the patiet Brief presetatio/discussio 3. Kowig about the patiet s medical, psychosocial ad spiritual status Presetatio/discussio 4. Kowig how to commuicate to the patiet i a supportive ways Presetatio/discussio 5. Kow how to recogize ucotrolled symptom. Presetatio/Q&A 6. Kow whe ad how to report to supervisor ad seek help Presetatio/Q&A 7. Resiliece ad self-care Brief presetatio/discussio 8. Grief ad bereavemet support Brief presetatio/discussio Source: Adapted from: Istitute of Palliative Medicie. Palliative Care: A Workbook for Carers. Calicut, Kerala, Idia: WHO Collaboratig Cetre for Commuity Participatio i Palliative Care ad Log Term Care,

91 A WHO guide for plaers, implemeters ad maagers Aex 6 Liks A really practical hadbook of childre s palliative care: for doctors ad urses aywhere i the world Africa Palliative Care Associatio (APCA) Asia Pacific Hospice Palliative Care Network Ceter to Advace Palliative Care. Pediatric palliative care field guide: a catalogue of resources, tools ad traiig to promote PPC iovatio, developmet, ad growth Childre s Project o Palliative/Hospice Services (ChiPPS), a program of the Natioal Hospice ad Palliative Care Orgaizatio of the Uited States Ed-of-life Nursig Educatio Cosortium (ELNEC) Europea Associatio for Palliative Care (EAPC) Europea Associatio of Palliative Care (EAPC) Primary Care Referece Group ICPCN e-learig programme 83

92 Itegratig palliative care ad symptom relief ito paediatrics Iteratioal Associatio for Hospice ad Palliative Care Iteratioal Childre s Palliative Care Network Lati America Palliative Care Associatio NHPCO Stadards of practice for pediatric palliative care ad hospice Pai ad Policy Studies Group Palliative care for ifats, childre ad youg people, the facts: a documet for health care professioals ad policy makers. Prepared by the EAPC Task Force o palliative Care for Childre Palliative Care Guidelies Plus Pediatric palliative care: recommedatios for treatmet of symptoms i the Netherlads Together for Short Lives: Basic Symptom Cotrol i Paediatric Palliative Care Whe childre die: improvig palliative ad ed-of-life care for childre ad their families 84

93 A WHO guide for plaers, implemeters ad maagers WHO Guidelies o the pharmaceutical treatmet of persistig pai i childre with medical illess World Health Orgaizatio - Palliative Care Programme - Guidelies o persistig pai i childre - Plaig ad implemetig palliative care services: a guide for programme maagers - Global atlas of palliative care at the ed of life World Hospice Palliative Care Alliace World Orgaizatio of Natioal Colleges, Academies ad Academic Associatios of Geeral Practitioers/ Family Physicias (WONCA) 85

94 Itegratig palliative care ad symptom relief ito paediatrics Aex 7 Glossary Bereavemet support Psychological or spiritual cousellig or other emotioal support for persos grievig after the death of a loved oe. Capacity-buildig A process by which idividuals, istitutios ad societies develop abilities, idividually ad collectively, to perform fuctios, solve problems ad set ad achieve their goals. Childre Persos up to their 18 th birthday/the age of 18 years (Uited Natios). Civil society Structures idepedet from govermets such as ogovermetal orgaizatios (NGOs) ad huma rights groups, idepedet activists ad huma rights defeders, religious cogregatios, charities, uiversities, trade uios, legal associatios, families ad clas. Commuity health workers (CHWs) Persos who assist with health care i their ow commuities, are selected by the commuities, should be aswerable to the commuities for their activities, should be supported by the health system but ot ecessarily a part of its orgaizatio, ad have shorter traiig tha professioal workers. Health A state of complete physical, metal ad social well-beig ad ot merely the absece of disease or ifirmity. (Preamble to the Costitutio of the World Health Orgaizatio as adopted by the Iteratioal Health Coferece, New York, Jue, 1946; siged o 22 July 1946 by the represetatives of 61 Member States [Official Records of the World Health Orgaizatio, No. 2, p. 100] ad etered ito force o 7 April The Defiitio has ot bee ameded sice 1948.) Health systems stregtheig The process of idetifyig ad implemetig the chages i policy ad practice i a coutry s health system so that the coutry ca respod better to its health ad health system challeges. Ay array of iitiatives ad strategies that improves oe or more of the fuctios of the health system ad that leads to better health through improvemets i access, coverage, quality or efficiecy. Hospice A orgaizatio or istitutio devoted etirely to providig ipatiet or outpatiet palliative care for patiets ear the ed of life. Itegrated health services Health services that are maaged ad delivered i a way that esures people receive a cotiuum of health promotio, disease prevetio, diagosis, treatmet, disease maagemet, rehabilitatio ad palliative care services, at the differet levels ad sites of care withi the health system, ad accordig to their eeds throughout their life course. 86

95 A WHO guide for plaers, implemeters ad maagers Itersectoral actio The iclusio of several sectors, i additio to health, whe desigig ad implemetig public policies that seek to improve health care ad quality of life. Nocommuicable disease (NCD) A disease or medical coditio that is o-ifectious ad o-trasmissible amog people, such as heart disease, stroke, cacer, diabetes ad chroic lug disease. Nogovermetal orgaizatio (NGO) A orgaized etity that is fuctioally idepedet of, ad does ot represet, a govermet or state. People-cetred health services Health services that are desiged to icorporate the perspectives of idividuals, families ad commuities. They are based o the covictio that idividuals, families ad commuities are participats i as well as beeficiaries of trusted health systems that respod to their eeds ad prefereces i humae ad holistic ways. People-cetred care requires that people have the educatio ad support they eed to make decisios ad participate i their ow care. It is orgaized aroud the health eeds ad expectatios of people rather tha diseases. Primary health care (PHC) Essetial health care based o practical, scietifically soud ad socially acceptable methods ad techology. It is the cetral fuctio ad mai focus of the coutry s health system, is essetial for the overall social ad ecoomic developmet of the commuity, ad is the first level of cotact with the atioal health system ad brigs health care as close as possible to where people live ad work. It should be uiversally accessible to idividuals ad families i the commuity, ad should be affordable for the commuity ad coutry at every stage of their developmet Serious health-related sufferig (SHS) Sufferig is health-related whe it is associated with illess or ijury of ay kid. Sufferig is serious whe it caot be relieved without medical itervetio ad whe it compromises physical, social or emotioal fuctioig. Palliative care should be focused o relievig the SHS that is associated with life-limitig or life-threateig coditios or the ed of life. Social determiats of health The coditios i which people are bor, grow, live, work ad age. These circumstaces are shaped by the distributio of moey, power ad resources at global, atioal ad local levels, ad they are the mai cause of health iequities the ufair ad avoidable differeces i health status see withi ad betwee coutries. Uiversal health coverage (UHC) Health coverage that provides people with the health services they eed while protectig them from exposure to fiacial hardship icurred i obtaiig care. Health services are broadly defied to iclude health promotio iitiatives (such as ati-tobacco policies or emergecy preparedess), disease prevetio activities (such as vacciatio) ad the provisio of treatmet, rehabilitatio ad palliative care (such as symptom relief ad ed-of-life care) of sufficiet quality to be effective. 87

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