Nordisk tidsskrift i barnepalliasjon

Nordisk tidsskrift i barnepalliasjon JA TIL LINDRENDE ENHET OG OMSORG FOR BARN Nr. 3 2014 Barnepalliasjon innebærer en aktiv og total tilnærming og omfatter fysisk, emosjonell, sosial og eksistensiell støtte gjennom hele sykdomsperioden, til døden og ettervern for foreldrene og søsken. Det fokuseres på forbedring av livskvalitet og den medisinske behandlingen. Barnehospice- et hjem utenfor hjemmet

Redaktoren Natasha Pedersen De siste 5 årene har jeg reist til mange land og besøkt fagfolk med ulike profesjoner som har barnepalliasjon som sitt arbeidsområde. Jeg har også besøkt en rekke barnehospicer, Tyskland, Brasil, Sverige, India, Dublin, Storbritannia og hospice Stabekk i Norge. Mitt første besøk var hos et barnehospice i Tyskland i 2010 og er enda et besøk som sitter friskt i minne! Norge har i dag ca 200 avlastningsboliger og barneboliger og noen likheter er det mellom dem og et barnehospice! Men også store forskjeller! Gjennom disse siste to årene har og hatt gleden av å ha det faglige ansvaret og lagt opp studieturer for omlag 60 helsepersonell til barnehospicer. Dette er ansatte som daglig jobber med barn med livstruende og livsbegrensende tilstander i Norge. I mai i år, hadde jeg studietur til London med 30 ansatte på Nordre Aasen i Oslo. En tur som var svært vellykket og gav ansatte stor inspirasjon. Å innhente kunnskap og kompetanse fra andre land er viktig for utviklingen av barnepalliasjon i Norge. Her inngår også både teoretisk og praktisk kunnskap fra ulike barnehospicer. Denne utgaven av tidsskriftet gjenspeiler noen av fagmiljøene som organisasjon har samarbeidet med gjennom disse årene og som bidrar med kunnskap til oss! Noe jeg kjenner en stolthet over! Barnehospice er et tilbud til barn og unge som er alvorlig syke og døende. Det er både en behandlingsfilosofi og omsorgsfilosofi og et sted som har spesialisert seg på å gi et lindrende behandling og omsorgstilbud. Hospicefilosofien innebærer en helhetlig/holistisk omsorgstanke til barnet og familien for å avhjelpe behov og utfordringer av fysisk, psykisk, sosial, og eksistensiell karakter forbundet med livstruende sykdommer og alvorlige tilstander. Omgivelsene i et barnehospice er minst mulig sykehuspreget med stor vekt på livsglede og livskvalitet. Arkitektur, interiør og estetikk og en adferd hos personalet, som styrker verdighet og respekt, lindrer lidelse og gir trøst og støtte i prosessen frem mot døden og i etterkant. Tjenestene som barnehospice gir, er til familier fra alle trosretninger, kulturer og etnisk bakgrunn og man legger vekt på å respektere betydningen av familienes religiøse skikker og kulturelle behov, som er avgjørende for det daglige livet til hver familie. Tjenestene til barnehospice er dedikert til å forbedre livskvaliteten for barn og unge som ikke forventes å leve til å nå voksen alder samt deres familier. De gir fleksibel, praktisk og gratis søtte, også til barnets hjem og hjelp til besteforeldre og skolen. Ofte og på selve hospicet. Ofte gis dette også over mange år, og på ulike stadier av barnets eller ungdommens sykdom. Dette kan innebære å gi korte pauser og aktiviteter på dagtid slik at familier får en pause, og hjelp til kontroll av smerte eller andre plagsomme symptomer og støtte for familiemedlemmer, inkludert brødre og søstre. Gruppesamtale, SPA og samlinger. Ved livets slutt til barnet og ungdommen tilbyr barnehospicet også terminalpleie og sorgstøtte så lenge det er nødvendig, for å hjelpe familier og venner. Det er et sterkt økende antall barnehospice som blir etablert over hele verden. Et Barnehospice variere i innhold og organisering og har svært mange ulike tjenester. Men er tuftet på det samme fundamentet og grunnlaget er barnepalliasjon. Helsepersonell som har vært med på disse turene er imponerte over det helhetlige fokuset barnehospice har. Og ikke minst at liv og død kan høre sammen ved å fokusere på livet. Hospice favner rett og slett over alle, også de ansatte. Vi har et stykke igjen å gå, for at vi kan gi fullverdig tilbud om barnepalliasjon. Hospice er verken gammeldags eller lettvint medisin, men en del av løsningen! Familiene må selv få bestemme hvor de ønsker å motta tjenestene, og dette vil kreve fleksibilitet og et mangfold av tjenester. Med ønske om en god advendt og julehøytid. Og et fremgangsrikt barnepalliasjonsår i 2015. Mvh Kurs og konferanser i 2015 Se hjemmesidens kalender for mere informasjon. Taipei, Taiwan -The Asia Pacific Hospice Conference 30 april- 3 mai. København The 14th World Congress of the EAPC, 8-10 mai. Bristol, England The 4th International Public Health & Palliative Care Conference 11. 16 mai. 7th Cardiff international conference, pediatric palliative care. 8 10 juli 5th Annual Neonatal Palliative & End of Life Care Conference The Continuum of Care for Families 9. Februar. USA Tromsø, pediaterdagene 21.-23. januar. 2 I BARNEPALLIASJON - den lindrende omsorgen for barn og unge

Innhold Barnepalliasjon Nr 3-2014 Tidsskrift i barnepalliasjon Tidsskriftet gis ut 3 ganger i året. April, September og Desember. Tidsskriftet skal speile trenden og utviklingen av barnepalliasjon Bidra til økt kunnskap og informasjon om barnepalliasjon Være et vindu for samfunn og media mot barnepalliasjon Sette fokus på viktige temaer innen barnepalliasjon Være et medlemsblad for Ja til lindrende enhet og omsorg for barn. JLOB Ja til lindrende enhet og omsorg for barn forbeholder seg retten til å oppbevare og publisere artikler og annet stoff også i elektronisk form, for eksempel via internett. Alt som publiseres representerer forfatterens synspunkter. Disse samsvarer ikke nødvendigvis med redaksjonens eller JLOB sine offisielle synspunkter Ansvarlig Redaktør Natasha Pedersen np@barnepalliasjon.no Redaksjonsmedlemmer Chantal Wood Caprice Knapp Susan Fowler-Kerry Silje Gismarvik Tutturen redaksjon@barnepalliasjon.no Design Centrum Trykkeri AS Cecilie Rott cecilie@centrum-trykkeri.no 2 Redaktøren Natasha Pedersen 3 Innhold i denne utgaven 4 Hospice - en behandlings- og omsorgsfilosofi i praksis 6 India s first Children s Hospice is filling the last days of terminally ill children with happiness 8 Många sjuksköterskestudenter oförberedda på att möta döende 9 Palliaive care for children in New Zealand 14 32 years on and still learning! 16 Belarus Children s Hospice (BCH) feirer 20 år med gratis palliativ omsorg til syke barn og støtte til deres familier 17 What is current in Children s Hospice? Concurrent care 19 Arbejdet med hospice i Danmark - historien 23 Children s Palliative care in Ireland - Policy and practice 27 Palliativt arbeid med barn - mer enn omsorg 29 Barnkompetens viktigast av allt på Barnhospice 31 Det helsepolitiske hjørnet Adresse: Tidsskrift I barnepalliasjon Trollkleiva 28 4638 Kristiansand Forisdefoto og foto som forøvrig ikke er kreditert i bildetekst. Depositphoto/ JLOB Abonnement 3nr. 350 kr privat 750 kr bedrift/institusjon 150 kr for enkelt nr. Bestilles på mail: barnepalliasjon@akuttjournalen.com Barnepalliasjon på nett: www.barnepalliasjon.no Konto nr: 1503.13.71039 Neste nummer kommer i april 2015. NR 3 2014 I 3

Hospice -en behandlings- og omsorgsfilosofi i praksis AV ASTRID RØNSEN, LEDER HOSPICEFORUM NORGE/FØRSTELEKTOR HIG. Hospice er en behandlings- og omsorgsfilosofi knyttet til alvorlig syke og deres nærmeste. Denne omsorgsfilosofien er knyttet til mennesker med kronisk sykdom uavhengig av sykdomsårsak og alder. Når barn og unge er alvorlig syke er omsorgstilbudet rettet mot familien som en naturlig helhet. Hospicefilosofien som grunnlag for barnepalliasjon Hospice har vært grunnlaget for det tverrfaglige fagfeltet «palliative care» (i Norge omtalt som palliasjon). WHO har definert dette fagfeltet med utgangspunkt i hospicefilosofien slik den ble presentert på 1960- tallet hovedsakelig knyttet til Cicely Saunders gjennom hennes beskrivelse. Ikke minst viste miljøet rundt Saunders gjennom opprettelsen av St. Christophers Hospice hvordan denne omsorgsideen eller filosofien kunne omsettes i praksis. Slik sett er hospice en omsorgsfilosofi og i stor grad blitt knyttet til og forstått som konkrete tjenestetilbud. I Europa har dette i stor grad vært egne institusjoner. I Amerika har hovedvekten vært på hjemmebaserte tilbud hvor sykepleiere, leger, frivillige og andre har kommet hjem til de som har trengt et omsorgstilbud. Fra starten var det den døende pasienten som var utgangspunkt for denne omsorgen. Senere har «palliative care» blitt utvidet til å gjelde omsorg for den kroniske pasienten og de nærmeste over et lengre tidsrom. For barn og unge med alvorlig sykdom og/eller varig funksjonsnedsettelse er eksempelvis behovet for palliativ behandling og omsorg stort over et mulig lenger tidsrom, da prognose og livslengde er vanskelig å forutse. Hospice som tjenestetilbud for barn og unge kan dermed både representere hjemmebaserte tilbud som eksempelvis «Barnesykehuset» knyttet til Oslo Universitetssykehus og egne barnehospice. Egne hospice for barn finnes i hele verden. I Norge er ikke dette en realitet enda. Hospice som begrep Hospice er imidlertid et fremmed begrep i Norge. Hva betyr det egentlig og hvor har dette begrepet sin opprinnelse? En vei til å forstå innholdet i hospice er å gå til røttene både rent historisk, språklig og forstå sammenhengen det ble brukt; som et begrep knyttet til pilegrimstradisjonen i middelalderen. Hospice som begrep bygger på de to ulike latinske begrep hospes og hospitium. Hospes som begrep er det samme språklige utgangspunktet til både verten (host) og gjesten (pilegrimen). Slik sett blir båndet mellom hjelper og mottaker for denne hjelpen synliggjort gjennom hospes-begrepet. Hospitium -bet. et hvilested på reiser, viser til det konkrete stedet pilegrimen tok inn på sin vandring. Dette er senere grunnstammen i begreper som hospital, hospits, hotel og det engelske ordet for gjestfrihet -hospitality. Det var nettopp denne vennlige gjestfriheten en ønsket å signalisere gjennom hospice som begrep, et begrep som nettopp var benyttet i flere århundre om steder hvor folk med ulike behov kunne komme inn enten for losji eller for forpleining og omsorg. Hospicebevegelsen i vår tid Det var Cicely Saunders som valgte å bruke hospice når hun skulle gi navn til sitt foregangssted når det gjaldt omsorg for alvorlig syke og døende. -Bevegelsen i moderne tid gjennom bl.a. etablering av St. Christophers We can t add days to life, but we can add life to days (Cicely Saunders) 4 I BARNEPALLIASJON - den lindrende omsorgen for barn og unge

BIOGRAFI Astrid Rønsen Leder av Hospiceforum Norge Førstelektor, Høgskolen i Gjøvik (HiG) Fagansvarlig ved tverrfaglig videreutdanning innen Palliativ omsorg, 60sp (HiG). Sykepleier Hospice Lovisenberg. Medlem International Work Group on Death. Dying and Bereavement (IWG) hospice i London i 1967. For henne var det viktig å fremheve fellesskapet som en vesentlig del av den omsorgskulturen som er så viktig for døende og deres nærmeste. Hennes engasjement var bl.a. begrunnet i datidens neglisjering av døende ved holdningen: «det er ikke mer vi kan gjøre for deg». Hennes holdning var den motsatte; når du er alvorlig syk og må forholde deg til din egen dødelighet er det uendelig mye vi kan gjøre som bekrefter deg som menneske og som kan lette dine plager eller din lidelse. Hva inneholder hospicefilosofi? I Oxford Textbook of Palliative Medicine har Saunders (2004) presentert innholdet i hospicefilosofien under overskriften «Prinsipper og utfordringer». Her fremheves den alvorlig sykes sammensatte behov som krever en tverrfaglig innsats. Lindring av pasientens smerter og andre plagsomme symptomer var helt sentralt. Her innførte Saunders begrepet «total pain» som en metafor for en helhetsforståelse av hvordan pasientens lidelse måtte forstås; smerte er ikke bare en fysisk erfaring men må også forstås ut fra et psykisk, sosial og åndelig/ eksistensiell perspektiv. Nettopp denne forståelsen av mennesket og sykdomsplagene var grunnlaget for tverrfaglighet som en arbeidsform i møte med den som er syk. Der «total pain» er utgangspunktet er «total care» svaret. Det alvorlig syke barnet i denne sammenheng må forstås og møtes som et helt menneske som forstås i den familiesammenhengen det hører hjemme. Slik sett er de nærmeste også en selvfølgelig del av denne omsorgen. Velvære har vært et uttrykt mål for hospiceomsorg. I senere definisjoner av «palliative care» er velvære erstattet av livskvalitet som mål for behandling og omsorg. Da må en ta utgangspunkt i hva som er livskvalitet for den enkelte. Et annet viktig prinsipp er mulighet for valg av sted hvor livet kan leves når dagene er begrenset og dermed dyrebare. Pasienten og de nærmeste må få mulighet til å få tilbringe denne viktige tiden der de selv ønsker å være, det være seg hjemme eller i tilrettelagte tilbud. Her må en ta hensyn til familiens samlede ressurser og behov. I forhold til barn og unge blir det viktig å finne gode og fleksible løsninger som både møter behovet hjemme og møter behov for avlastning/støtte utenfor hjemmet. Opprettelse av barnehospice som institusjonstilbud er derfor tilrettelagt i ulike land. Eksempler på dette er de mer enn 40 hospiceprogrammene for barn i Storbritannia eller fremveksten av barnehospice i Tyskland gjennom siste 10 år. Å se tiden en har som en viktig verdi, er fremhevet av Saunders (2004). Ut fra mange års erfaringer viser hun gjennom ulike pasientfortellinger hvordan nettopp denne tiden kan være en mulighetenes tid for familien totalt sett. Det forutsetter imidlertid at de ulike familiemedlemmene som foreldre, søsken, beste foreldre og venner blir sett og møtt som enkeltpersoner og som en del av fellesskapet rundt den alvorlig syke personen. Men det er ikke bare de nærmeste som berøres. Saunders var opptatt av at personalet og de frivillige som var involvert ble møtt på sine behov for støtte. Å arbeide med alvorlig syke, døende og sørgende er utfordrende og givende. Disse livshendelsene utfordrer oss som mennesker. Først og fremst er det det syke barnet og familien som er hovedpersonene når vi knytter hospicefilosofi til barn som gruppe. Behovet for å finne mening, løfte håpet og hente mot til å møte det uungålige er en del av denne livsvandringen. Det kan være både utfordrende og givende å stå nær familiene. Det er derfor viktig å utvikle et fellesskap som klarer å ivareta den enkelte og hvor omsorgskulturen er kjennetegnet av faglig kompetanse og trygghet, samtidig som respekt for enkeltindividet holdes høyt. I dette hospice-fellesskapet kan familiene finne hjelp, støtte og trøst. Å søke mening presentertes som et dypt fellesmenneskelig behov. Uavhengig av trosmessig ståsted blir det derfor viktig å møte den enkelte på deres åndelige og eksistensielle behov, det være seg pasienten, de nærmeste eller de som har sitt virke i omsorg for alvorlig syke og døende. Slik sett har hospice vært oppfattet som en omsorg hvor åndelige, eksistensielle og religiøse spørsmål har sin selvfølgelige plass. Imidlertid advarer Saunders mot å trekke med egne overbevisninger inn i møte med pasienter og pårørende. Det samme gjør Jacobsen (2009) når han advarer mot å gjøre pasienter til hjelperens «prosjekter»; det være seg alt fra å lindre symptomer til å definere andres psykosoiale og åndelige behov. Fordi en først og fremst har fokus på livet som leves, blir det viktig å skape fysiske rammer som understøtter det normale livet. Et hospice legger vekt på en hjemlig atmosfære hvor institusjonspreget er minst mulig dominerende. Når en gjennom alvorlig sykdom blir minnet om livets begrensninger, blir det viktig å fylle liv til dagene. Referanser: Jacobsen, B (2009): Livets dilemmaer, Gyldendal Akademisk Saunders, C (2004): Forward I: Doyle, D. et al. (2004) Oxford Textbook of Palliative Medicine, 3rd edition, Oxford University Press http://www.chionline.org Children`s hospice International http://www.barnepalliasjon.no http://www.hospiceforum.dk NR 3 2014 I 5

India s first Children s Hospice is filling the last days of terminally ill children with happiness WRITTEN BY SHREYA PAREEK AND PUBLICHED WITH PREMISSION TO THIS JOURNAL. Mansi and Abhishek started Happy Feet Home, the first hospice for children in India in 2014, a place which fills happiness in the lives of kids with terminal illnesses. If a child has just a week left to live, we make sure that it is the happiest week of his or her life, says the Happy Feet team. Hospice brings hope Akash, a 16-year old boy is HIV positive with barely any chances of survival. The disease has made him weak and dull. Last time he attended school was when he was in sixth grade. He lost both his parents some time back and started staying with his relatives. His weak health did not permit him to attend a school regularly. Waking up late in the afternoon, going out and spending time aimlessly only to return at night to sleep was what his regular day looked like. He had gone into a shell and did not interact much with anyone. This lifestyle took a complete turn when he first went to Happy Feet Home, He now comes here at sharp 10 in the morning, talks to other children and has even invited us to his house. He has started taking responsibilities and wants to learn new things. He is more active and happier now. The huge positive change in his attitude has been a delight to watch, says Mansi Shah, co-founder, Happy Feet Home. There are thousands of children like Akash who suffer from terminal diseases like cancer, HIV, etc. They have little or no hope of getting cured and living a normal life. When the child and his or her entire family are grief-struck, there is a place that is filling a little happiness in their lives. This is Happy Feet Home, a place which is a fun-filled shelter to many such children who have little or no time left to live. Started by Abhishek Tatiya and Mansi Shah, Happy Feet Home aims to provide a healthy and happy environment to children suffering from terminal diseases. As per a report by International Association for Hospice & Palliative Care, over 400,000 children in India need palliative care. Shah and Tatiya are making the bitter reality of fast approaching death a tad less sad and scary for these children by providing a space where 6 I BARNEPALLIASJON - den lindrende omsorgen for barn og unge

they can come and play with other kids, have tons of activities to keep them occupied, participate in therapy and counseling sessions to help them cope with their maladies all this in a safe and vibrant environment, free of cost! Happy Feet Home is not a place for dying people. It is a place to celebrate life and fill happiness in the lives of these young ones, Tatiya. The start Shah had around nine years of experience in the social sector as she worked with various NGOs. When she was working with St. Jude India ChildCare Centre for children fighting cancer, she realized that there are hardly any places or centres for children suffering from terminal diseases in India. She then met Tatiya who had quit his job after working in the corporate sector for five years. We were both talking about the situation and we came up with the idea of setting up a place like this. There are many places that cater to the needs of terminally ill patients. But they accommodate both children as well as adults, Shah says. Children s needs are different from adults and there was no place specifically catering to the needs of such children in India. That is when we decided that this is something we have to do, she adds. The uniqueness of the idea necessitated a lot of research. Both the co-founders visited many hospitals and other hospices to see how they worked and what all resources were needed. Finally, India s first hospice for children was set up in Sion in Mumbai six months ago and started with an intake of 35 children on August 14, 2014. Celebrating life The idea is to make the last days of these children as happy as possible. Even if one has just a week to live, we want to make sure that it is the happiest week of his or her life, says Shah. What they offer The team of five that consists of Shah and Tatiya also includes a nurse, therapists, a housekeeper and interns along with several volunteers who work with them on and off. Happy Feet Home basically focuses on five things: Activities: Several recreational and interesting activities are planned by the team of professionals to engage the kids. Various props, toys and games are a crucial part of the activities which also help the child to mingle with other children and spend some quality time. Therapies: Various art, dance and music therapies are an important part of this day-care hospice. These therapies impart a sense of enthusiasm among the children and make them forget their pain as they spend several hours here. Counselling: It is one of the most crucial services provided by the Happy Feet Home team. Counselling is not restricted to kids alone but is also extended to the family and caregivers to help them cope with the situation and be strong in dealing with grief. Respite Care: This allows a parent to take some time off and relax, knowing that their child is in safe hands and is well taken care of. Bereavement Support: This is extended to the grieving families after the child leaves the world. It helps them to cope with the loss and move on in life When such news breaks, the entire family goes into a state of grief and sadness. Everyone gives up hope including doctors, the patient and the family. These children have a right to spend their last days with maximum happiness, no matter how long they are going to live, says Tatiya. Happy Feet Home has tied up with various experts and hospitals to provide quality psychosocial help to these children. The doctors The duo met Dr. Mamta Manglani, Head of Paediatrics at Sion Hospital, who helped them form a partnership with the hospital. Doctors from Sion Hospital have been providing constant support to the team a space in which to operate. Another person they wish to acknowledge is Dr. Muckaden, HoD of Palliative Care Department at Tata Memorial Hospital, who has been providing excellent guidance as the Happy Feet Home team keeps going back to her with all their queries. Happy Feet Home has managed to spread happiness in the lives of around 85 children so far and they aim to reach out to many more in the future. We have children as young as 2 to 4 years old. While they cry and feel restless in hospitals, there are smiles and laughter on their faces as soon as they enter Happy Feet Home. This validation of the change in attitude of these kids is something which keeps us going, says the duo. Like any startup, Happy Feet Home too saw its share of challenges. With lack of funds to the uniqueness of the idea that posed several hurdles, the team had to struggle to build everything from scratch. We were working with children who were not motivated at all. They had no reason to smile. So, it was important for us to get staff who can manage to remain charged and enthusiastic at all times, says Tatiya. Happy Feet is a young organization and soon will be registered as a trust with seven trustees including various experts and professionals. Visit www.happyfeethome.org NR 3 2014 I 7

Många sjuksköterskestudenter oförberedda på att möta döende I de flesta sjuksköterskors yrkesvardag ingår att vårda döende patienter. En studie med över 200 studenter visar att många blivande sjuksköterskor känner sig oförberedda och rädda inför mötet Forskare vid Sahlgrenska akademin har i en studie intervjuat 222 sjuksköterskestudenter vid Göteborgs universitet, Högskolan i Skövde och Sköndal Högskola i Ersta om hur de resonerar kring att vårda döende patienter, deras tankar kring hur man kan stöttar och samtalar med patienten och deras egna känslor inför mötet med döende. Skrämmande och svårt att prata om Intervjuerna visar att även om många studenter ser döden som en naturlig del av livet, känns tanken på döden obegriplig och skrämmande för många. Hos de flesta väcker tanken på döden känslor av hjälplöshet, osäkerhet och otillräcklighet. En del anser det naturligt att prata om den, andra tycker att döden är det värsta som kan hända och har svårt med tanken på att behöva prata om den, säger Susann Strang, forskare vid Sahlgrenska akademin. Sjuksköterskans ansvar att vara stark Många studenter uttryckte att de inte vet vad man ska svara på patienternas frågor, och att de ville byta samtalsämne när patienter pratade om döden. Samtidigt anser en stor del av studenter att det är sjuksköterskans ansvar att vara stark inför patienterna. Vår studie visar att studenternas idealbild av en kompetent sjuksköterska och en idealisk vård skiljer sig stort från deras egen verkliga situation. Frågorna om död och döende handlar mycket om studenternas egen rädsla och brist på erfarenhet, samtidigt som de har hårda krav på sig själva att vara goda vårdare, säger Susann Strang. Många hoppas att det här ska bli lättare med tiden, att de en dag ska vara modiga nog att ta hand om döende patienter och våga vara närvarande. Här kan utbildningarna ta en mer aktiv roll genom att tidigt hitta de studenter som känner en stark rädsla att möta och vårda döende patienter, och erbjuda dem handledning, utbildning och stöd. Artikeln Swedish nursing students reasoning about emotionally demanding issues in caring for dying patients publiceras i International Journal of Palliative Nursing. Länk till tidskrift: http://www.magonlinelibrary. com/toc/ijpn/current Röster ur studien: Det skrämmer mig, och jag var helt förstörd under praktiken när patienten dog. Hela situationen kan vara skrämmande och den döda kroppen Känner mig inte obekväm när det gäller att vara hos en döende person. Men jag känner mig osäker på hur jag samtalar, vilka frågor jag får. Har inte så mycket erfarenhet av att ha själavårdande samtal med döende personer. Som sjuksköterska ska man vara stark. Kanske det blir sorgligt att se en människa som man tog hand om dö framför mina ögon. Kanske man blir känslomässigt ledsen. Men jag ska vara tröst för döendes familj. Då ska jag vara stark också. För jag tycker att det är så otäckt ta hand om den kalla kroppen. Sitta o vaka o finnas där så länge patienten andas klarar jag av, men sedan när de dör tycker jag själv att det är jättejobbigt. Visst är det svårt men som vårdpersonal och som medmänniska ser jag det som min uppgift att inte vara rädd eller obekväm inför svåra saker. Att få höra någon annans tankar om något stort som berör mig såväl yrkesmässigt som personligen ser jag som en förmån. Döden är för mig det värsta som kan hända men samtidigt en del av livet och man måste våga tala om det. Kontakt: Susann Strang, docent vid Sahlgrenska akademin, Göteborgs universitet 031-7866039 susann.strang@gu.se web: http://www.caresci.gu.se 8 I BARNEPALLIASJON - den lindrende omsorgen for barn og unge

Palliative Care for Children in New Zealand BY DR ROSS DRAKE, CLINICAL DIRECTOR, PAEDIATRIC PALLIATIVE CARE SERVICE, STARSHIP CHILDREN S HOSPITAL, AUCKLAND CLINICAL LEAD, NZ PAEDIATRIC PALLIATIVE CARE CLINICAL NETWORK Introduction By any way it can be measured New Zealand (NZ) is a small, geographically isolated, island nation. It sits in the southwest pacific between latitudes 34 to 47o S placing it in the temperate zone of the world. However, as it is surrounded by ocean currents and lacks a continental influence the climate is milder with temperatures rarely below 0 C or above 30 C in populated areas. NZ extends more than 1,600 km along its main axis from Cape Reinga at the top of the North Island to Bluff at the bottom of the South Island. It only has a maximum width of 400 km, making access to the extensive coastline (approximately 15,134 km) easy for the majority of the recently estimated 4.5 million people residing in NZ. This also means the overall population density is low. Besides the two main islands there are numerous smaller islands, most notably, Stewart Island and the Chatham Islands. NZ is the first populated land to see the new day as the longitudes of the country are in the extreme east of the Prime Meridian meaning NZ standard time is eleven hours ahead of Greenwich Mean Time. The South Island is the largest land mass with around ¼ of the overall population and is divided along its length by the Southern Alps which consists of 18 peaks over 3,000 metres, the highest being Mount Cook/Aoraki at 3,754 metres. Large tracts of forest are devoted to national parks with the south-western corner, Fiordland, being an area of high mountains cut through with steep fjords. The more populated North Island is less mountainous and the site of the capital city, Wellington, and the largest city, Auckland at 1.4 million people. A large volcanic plateau runs through the centre of the North Island and forms the highest mountain; Mount Ruapehu at 2,797 metres and the country s largest lake, Lake Taupo; a water filled caldera. NZ is a developed country run by a parliamentary democracy governmental system and constitutional monarchy with Queen Elizabeth II the current sovereign. NZ ranks highly in international comparisons in many areas including educational attainment, economic freedom and is considered to have amongst the most liveable cities in the world. NZ has a strong bicultural awareness with the Treaty of Waitangi recognised as NZ s founding document. The Treaty, named according to the place where it was first signed, is an agreement signed on 6 February 1840 between the British Crown and about 540 Māori rangatira or chiefs. It provides a broad statement of principles upon which the nation and government was built and it is common to refer to the intention, spirit and principles of the Treaty. The principles are not considered part of NZ domestic law but referred to in several Acts of Parliament. The majority of the NZ population identify as European (74%) while the indigenous Māori people make up the largest ethnic minority at 14.9% of the population. Asian (11.8%) and Pacific (7.4%) peoples make up other significant ethnic groups. The most commonly spoken language is English and Māori, spoken by 4.1% of the population, is an official language. Health Care System The Minister of Health has overall responsibility for the health system in NZ and in 2010 the NZ government contributed 83% of the overall health expenditure; 10.3% of GDP or USD$3278.60 per capita [1]. The Ministry of Health (MOH) is given the responsibility for leading and supporting the health sector by providing national policy advice, regulation, funding and monitoring the performance of each of the 20 District Health Boards (DHBs) who are responsible for providing or funding health and disability services in their community. National priorities are identified in the New Zealand Health Strategy and the New Zealand Disability Strategy, with additional Ministerial priorities and health targets, reflected in DHB plans and accountability arrangements. DHBs also own and run the public hospitals which provide a free, relatively extensive and high-quality health service to citizens or permanent residents. However, long waiting lists have developed for a number of operations and a secondary market of private health insurance allows members to have treatments and operations in the private sector. Paediatric Palliative Care in NZ In 2006 NZ had an estimated population of children/young people aged 0 to 19 years ( children ) of just over 1.2 million with the prevalence of children who would have been aided by having involvement of a paediatric palliative care (PPC) service appraised at 2.3 per 10,000 (minimum range estimate) to 3.2 per 10,000 (maximum range estimate). NR 3 2014 I 9

Children with non-malignant life-limiting conditions made up around 85% of those in need [2]. In a recent study looking at location of death for children aged 28 days to 18 years with a life-limiting illness during the period 2006 to 2009 42% were found to have died at home with those children receiving palliative care more likely to have been at home at the time of their death [3]. The size and population of NZ presents a specific set of difficulties when it comes to providing equitable access to children and their families or whānau who require highly specialised, tertiary level care such as palliative care. Simply, how can a limited workforce deliver effective palliative care to a small number of relatively, widespread affected children in an environment of constrained health funding? Palliative care for children was established in NZ after an assessment by the MOH in conjunction with the Paediatric Society of NZ (PSNZ) in 1998 was conducted as part of a national review of paediatric specialty services [4]. PPC was included after it was championed by a south Auckland paediatrician, Dr Adrian Trenholme as a direct result of the seminal publication from the Association for Children with Life-Threatening or Terminal Conditions and their Families, A guide to development of children s palliative care services [5]. The NZ review identified familiar gaps and inconsistencies in respite care, youth specific services, bereavement services and access to equipment, particularly for children with nonmalignant conditions, as well as highlighting a lack of expertise in palliative care including trained community paediatric nurses. The core recommendation was to establish a national specialist palliative care service that supported local or regional coordinators or link workers who, in turn, worked with local paediatric health care professionals. A national network would be derived from this core group and be charged with developing national standards of care and monitoring outcomes. In 1999, the only specialist PPC service ( the Service ) in NZ was established at Starship Children s Hospital in Auckland and was formally acknowledged as a national service thirteen years later, following a further MOH review [6]. The Service offers palliative care to the children BIOGRAPHY Dr Ross Drake has gained fellowships in Paediatrics (2000), Palliative Medicine (2003) and Pain Medicine (2011) and currently holds the position of Clinical Director of the Paediatric Palliative Care and Complex Pain Services at Starship Children s Hospital in Auckland. Both are small, interdisciplinary teams of specialist paediatric healthcare workers. Ross is also the current chair of the Ministry of Health appointed Palliative Care Advisory Group and member of the Australia and NZ PPC Reference Group. His professional interests include neuropathic and central pain syndromes and the decision-making process for children and young people with life-limiting conditions. in the greater Auckland region and advice their family/whānau, not infrequently, over a and support nationally. The aim is to deliver considerable period of time. seamless palliative care for children and their family/whānau across the hospital-community The Service has a more prominent role once continuum in the setting(s) of their choice. This the child returns home reflecting its capacity to is achieved by the Service maintaining a strong provide home based care. To ensure the child community focus and embracing the attitude and their family/whānau have timely access to of collaborative service delivery. Adherence 24 hour, 7-day a week care the Service links to the ideal of collaboration ensures liaison and supports, wherever possible, local health with and support of paediatric services in the care services including community paediatric hospital and then the appropriate community services, adult palliative care services and services once the child returns home. The primary health care professionals to provide team provides regular updates to the services the necessary day to day care, in addition to involved and maintains the link to the primary providing direct clinical care. The role of the paediatric team in recognition of the important Service tends to increase when the child enters relationships that have been built between the end of life phase, acknowledging this as a health care professionals and the child and core skill of a PPC service. 10 I BARNEPALLIASJON - den lindrende omsorgen for barn og unge

The Service has had minimal increase in personnel since inception and currently consists of 1.3 FTE specialist paediatrician, 1.0 FTE nurse practitioner, 0.6 FTE nurse specialist, 1.0 FTE specialist social worker, 0.5 FTE psychological support provided by a child psychotherapist (grief/bereavement support) and child psychiatrist. The Service covers the core age range of 0 to 15 years but does assist young people 15 years of age and older when they remain at school or under the care of a paediatric service and it is not appropriate for care to be transitioned to an adult service. The service is also available for parents who receive a prenatal diagnosis of a life-limiting condition and do not wish to have a termination of pregnancy. In 2009, 28% of referrals were for infants less than 1 year of age, 18% in the 1 to 5 year age group, 22% of children were aged 5 to 10 years and 20% 10 to 15 years of age. In the older age group, 10% of referrals were for young people aged 15 to 20 years and 2% 20 years and older. Childrens`s palliative care Referrals over the four-year period, 2005-08 inclusive, indicated 43% of children had cancer with this group dominated by central nervous system tumours (16% of the overall total). The next largest grouping, at 32%, was neurologic conditions including metabolic diseases and syndromes while cardiovascular anomalies made up 13% of referrals. The remaining 19% comprised a diverse group of conditions affecting the respiratory, infectious, immune (non HIV/AIDs), renal, hepatic and gastroenterology systems. A pivotal piece of non-clinical work, led by the Service social worker, Jess Jamieson, was the changing of the hospital s focus on Do Not Resuscitate orders in 2009 to an Allow Natural Death policy and accompanying End of Life Care Plan. This has been embraced by the Starship community and used to guide similar policy changes for paediatric services around the country. Evolution vs. Revolution What has become even more evident with the formation of a specialist palliative care service for children in Auckland is an inequity of access faced by many children in need and the lack of a systematic approach despite the clear path heralded by the speciality review [4]. In response, the author became increasingly involved in advocacy to effect change. Formal advocacy work started in 2003 when paediatric representation was confirmed on the newly formed MOH Palliative Care Working Group, this occurring as a direct result of the World Health Organization call for national cancer control programs and the publication of the NZ Cancer Control Strategy [7]. In 2008, the working group was disbanded in favour of two advisory bodies; the Palliative Care Advisory Group, formed to advise on the MOH work program, and the Palliative Care Council, accountable to the Minister of Health and holding the specific role of monitoring and evaluating outcomes in palliative care. The Advisory Group has maintained a mandated paediatric representative while the Council has had paediatric representation on a co-opted basis. The campaign for children s palliative care over the seven year period, 2003 to 2010, has been supported by a dedicated group of interested PSNZ members and the Paediatric Oncology Steering Group PPC Special Interest Group (SIG). Both groups were combined in 2008 to form a single PPC SIG under the PSNZ with robust, multidisciplinary membership and good representation from around NZ. These groups have been able to produce important pieces of work that have informed advocacy. For example, in 2003 the PSNZ sent all DHBs a questionnaire asking about various aspects of child health. This included, for the first time, questions on paediatric palliative care delivery. The survey confirmed a poor attitude to establishing the recommended link worker positions and emphasized general child health teams were providing palliative care for children in addition to their usual duties. The other finding of particular concern was an attitude of inherent misunderstanding where PPC was considered by respondents to be largely confined to children with cancer at the end of life. This was followed by a survey of health funders, through an Official Information Act request, on the direct spend for delivery of palliative care to adults and children in each hospital board region. This was considered necessary as poor funding had long been considered a fundamental barrier for the lack of development in children s palliative care. The results from the 90% of responses presented a shocking insight into the inequity of funding provision. Spending on adult palliative care totalled $44.2 million while children only figured a miserly $412,000; the majority of which was funding for the specialist service in Auckland. To expose this information and ten years after the failure of the original 1998 recommendations to be acted upon, with the exception of establishing a specialist service, the author wrote a strategy for PPC in NZ. This commentary gathered relevant international and national data and combined historical recommendations with an emerging model of care being supported by the PSNZ and was distributed to key stakeholders including the MOH. Essentially, the strategy championed a managed clinical network structure where children and their families/whānau with lifelimiting illness would receive the bulk of care from local paediatric services and primary health care professionals supported by a regional PPC link worker who, in turn, would receive assistance from the national specialist PPC service (Figures 1& 2). The composition urged the MOH to invest in implementing the necessary changes and while improved funding was not forthcoming advances were seen. In 2010 an unpublished MOH review identified the Starship team as a national service because of the clinical expertise present, the considerable clinical support of non-specialist paediatric and palliative care services across NZ and education initiatives. It was also acknowledged that this level of activity was not sustainable in the long term making the Service vulnerable. This resulted in the MOH supporting the PSNZ to establish PPC as a national clinical network in 2011 and commission the document, Guidance for Integrated Paediatric Palliative Care Services in New Zealand [6]. Published in 2012 this was an evidence based and updated confirmation for the identified model of care and proposed a robust implementation program including the development of substantiated clinical guidelines with the first phase covering end of life care and pain management currently being written. The PPC clinical network ( the Network ) appointed the author as the clinical lead and a clinical reference group (CRG) was established to strengthen the development of a NR 3 2014 I 11

Figure 1 Paediatric Palliative Care Clinical Network work program. The CRG was geographically representative of NZ and consisted of stakeholders from key disciplines, as well as having consumer and Maori representation. The clinical lead arranged a road show to the majority of DHBs to clarify how a network could function, ascertain the needs of different localities and develop a list of clinicians (medical, nursing, allied health) to be key contacts for their region. The key contacts have been a constructive way to disseminate updates and information widely and permit effective communication links for the leadership role played by various members of the Service. Service Development outside of Auckland The delivery of PPC outside of Auckland has most commonly been provided by generalist paediatric teams at the local hospital or at the child s home through outreach, community paediatric nursing services. The general paediatric services, largely composed of medical and nursing personnel, go the extra distance when children and their families/ whānau with life-limiting conditions are identified as requiring palliative and end of life care. The anticipated formation of regional link worker roles has not been forthcoming to date. The main reason for this being a perception that new funding is necessary to establish this position in spite of a case being made for a shift in existing funding. The shift in funding approach acknowledges the work is already being done by a number of clinical staff and affirms the need for developing specialist skills in one or two members of staff so that they, in turn, may support the wider paediatric healthcare team in that area. However, glimmers of hope have emerged. The adult hospice service in the city of Christchurch (South Island) has employed, from additional government operational funding, a full time Figure 2 Collaborative Support PPC nurse specialist to support children and their families/whanau with life-limiting conditions across the South Island. This position has been clinically supported by a paediatric oncologist with 0.2 FTE designated for PPC and avidly backed by the South Island paediatric network. In the Waikato region, immediately below Auckland, two non-governmental organisations provide palliative care for children and their families/whānau. Rainbow Place opened in June 2003 as a separate facility on the same site as Hospice Waikato. Counselling support is provided for children who have a significant adult family member with a palliative condition as well as providing nursing and counselling support for a small group of children and their families/whānau with life-limiting conditions. More recently, a two bedded respite unit for children has been formed. True Colours Charitable Trust provides specialist nursing support and psychological care to children requiring palliative care and their families/ whānau. Both services include bereavement care in their programs which are delivered across the Waikato DHB catchment and utilise the expertise, advice and support of the Service in Auckland, as necessary. In a few areas of NZ relationships have developed between adult hospice and paediatric services with each supporting the other with their specific knowledge to the advantage of the children and their families/whānau needing palliative care. This relationship has the added benefit of offering access to counselling/ bereavement services to the family/whānau including siblings of the ill child. For the most part, collaboration between paediatric services and adult hospice has arisen when one or two individuals have forged a relationship of understanding. In acknowledgement that current resourcing was a barrier to achieving the ideal delivery of service a memorandum of understanding was developed between the Network and Hospice NZ, as the agent for the bulk of adult hospices in NZ, to recognise the unique knowledge and skills of the respective services and agree to work together collaboratively to provide holistic child & family/whānau centred palliative care. This has been used by, at least, one paediatric service and adult hospice to formalise a relationship that can endure beyond one or two individuals. Hospices for Children in NZ NZ does not have a children s hospice and the NZ situation does not suit the development of children s hospices. The model of care outlined in the Ministry guidance document [6] was explicitly designed to cater for the desire of the majority of children and their families/ whānau to remain at home for as much of their palliation as possible. This is particularly important for Māori and Pacific peoples. Realistically, NZ has only one city, Auckland, of sufficient population to sustain a children s hospice of the Helen House variety. This raises significant issues for children and their families to access such a facility with travel taking them away from their community supports. It is also debatable that a country with a relatively small and widespread population such as NZ has the monetary capacity to maintain, what for most a distant facility. The attitude of the Network is to build adequate clinical ability to deal with the vast majority of issues; be they physical, emotional, social, spiritual or cultural, near to where the child and their family/whānau live. The matter of respite care, in many ways, is a problem for the wider paediatric health care community rather than a specific PPC issue. As such it requires creative approaches at a local level. Conclusion The clinical practice of palliative care for children does not have one recipe for success rather it requires an individualised, adaptable approach that relies on relationship and communication. Likewise, developing an equitable and accessible palliative care service for children requires a similar, personalised approach. The aim of the NZ approach is to enable regions to use their resources in the 12 I BARNEPALLIASJON - den lindrende omsorgen for barn og unge

most effective way possible while ensuring a minimum standard of care that can be raised over time. New Zealand has achieved what it has by taking a top-down approach. That is by establishing a specialist service for children which has accepted a national clinical and development role. This has required a professional and strategic mandate only made possible with the engagement and investment of the MOH and identified key stakeholders. The most important support having come from the wider paediatric healthcare community and palliative care groups. The formation of a paediatric SIG, open to adult palliative care workers was a significant moment in the NZ experience as it added diversity and energy to the work being done and enhanced the communication network. The benefit has been completion of essential bodies of work, most notably an overarching strategy, accepted model of care, needs assessment, gap analysis and, most recently, the development of clinical guidelines. Barriers to progress have been present along the way but, like the practice of paediatric palliative care, having the resources of a strong, committed group of interested people from different clinical and non-clinical backgrounds has afforded perspectives and solutions to overcome such impediments. This has improved the chance of a positive outcome. References 1) Health Expenditure Trends in New Zealand 2000 2010. Ministry of Health: Wellington, August 2012 2) Naylor W. National Health Needs Assessment for Palliative Care. Phase 1 Report: Assessment of Palliative Care Need. Palliative Care Council of New Zealand: Wellington, June 2011 3) Chang E, MacLeod R, Drake R. Characteristics influencing location of death for children with life-limiting illness. Arch Dis Child 2013; 98(6):419-24 4) Through the Eyes of a Child: A national review of paediatric specialty services. Ministry of Health: Wellington, 1998 5) A guide to the development of children s palliative care services. Report of a joint working party of the Royal College of Paediatrics and Child Health (RCPCH) and the Association for Children with Life- Threatening or Terminal Conditions and their Families. RCPCH: London, 1997 6) Guidance for Integrated Paediatric Palliative Care Services in New Zealand. Ministry of Health: Wellington, September 2012 7) The New Zealand Cancer Control Strategy. Ministry of Health and The New Zealand Cancer Control Trust: Wellington, August 2003 Stormberg er stolt samarbeidspartner med JLOB! Hold meg i hånda Vi i Stormberg tror på å være tilstede. Vi tror på oppmerksomhet, muligheter og engasjement. Både for de alle nærmeste og for de vi aldri ser. Men som vi vet er der. Og som trenger oss. Trenger deg. Alltid ha en hånd klar i tilfelle noen trenger å gripe den. Vi ønsker deg god jul og god tur! 1% av Stormbergs omsetning brukes til samfunnsnyttige og humanitære formål. Hittil har 1% andelen bidratt med mer enn 21 millioner til gode formål. Hver gang du handler hos oss, hjelper du oss å hjelpe. NR 3 2014 I 13

32 Years on and still learning! The Story of Helen House and The Development of the Children s Hospice Movement BY SISTER FRANCES DOMINICA Many years ago Dame Cicely Saunders, founder of the adult hospice movement, said, Hospice is a philosophy, not a facility. In other words hospice care is a way of thinking, translated into care appropriate for each individual with a lifeshortening condition, wherever they may be, with support for those closest to the sick person. She was stressing that hospice is not just a building. The beginning In 1978 a young woman contacted me asking if we could meet. Her 2 year old daughter had become unwell a few weeks previously, culminating in loss of consciousness and diagnosis of a massive cerebral tumour. She had surgery, regaining consciousness very briefly before lapsing into a coma. Her mother telephoned from hospital, knowing that my background was in paediatric nursing, asking if we could talk. This was the beginning of a long friendship. Helen remained in hospital for 6 months. She then had further brain scans and her parents were told that she had severe brain damage due to haemorrhage and that there was nothing more that could be done for her. They took her home, determined that they would care for her themselves for whatever life remained. At this time her sister was one month old. Helen needed 24 hour care 365 days a year. I soon began to realise that Helen s parents exhaustion was not caused just by the unremitting physical needs of their little daughter but also by their deep grief. Some weeks after Helen returned home I asked them if they would trust me enough to care for Helen for a few days from time to time to give them some respite. They agreed and when Helen was with me they caught up on sleep, had quality time with Helen s sisters, had a short holiday or had flu! This arrangement worked well for them and, with their full co-operation and in partnership, we began together to work out how we could extend the support I had been able to offer to Mumbai feb 2014 at ICPCN conference. Frances and Natasha talking about spirituality. them, to other children with life-shortening conditions and their families. The model was home rather than hospital or institution and we recognised that in many ways the families would be the experts in the care of their child. Our aim was to enable families to care for their sick child at home by: mobilising or providing community support offering occasional respite care, stepped discharge from hospital and end-of-life care, welcoming family members to stay 14 I BARNEPALLIASJON - den lindrende omsorgen for barn og unge

with their child whenever they chose to do so home visits and telephone support Helen House opened in 1982, 2 years and 10 months after the birth of the original idea. It was funded entirely by voluntary contributions and has room for up to 8 sick children at any one time. Because, like Helen, the children are cared for at home most of the time we are able to be available to about 150 families as well as those for whom we offer support in bereavement. There are 5 essential elements in the care we offer: family members remain in control and we recognise the privilege they bestow on us by trusting us to share in caring for their child the child is not an isolated individual but an integral part of the family and home is the centre of care and model of caring each member of the family will react differently to their situation and will have different needs where there is difference of opinion or dissension it is not normally for us to take sides however profoundly disabled the child may be, he or she deserves unqualified respect and dignity Those of us who are in caring roles will not always be able to meet every need of the family or answer all their questions but we should have the courage to stay alongside in the un-knowing. We are part of a team we and should not develop an exclusive relationship with a family, so making ourselves indispensable. We need to be flexible as the needs of the child and each family member change. While we learn the skills the family members use in caring for their child, we gradually build a relationship of trust. We may then, and only then, be in a position to suggest adaptations of those skills. We need to work closely with other agencies involved, networking for the greatest benefit of the child and family. There are exceptions to every rule but generally speaking families really want to be at the centre of the caring team. We may be in a position to help them to decide when medical or surgical intervention is no longer appropriate for their child. We should do everything we can lege of speaking at gatherings in many parts of the to ensure that when the child is dying, child world, often being translated as I speak, and one and family are in the place of their choosing. of the most moving experiences has been meeting some of those families and, in the hugs we Bereavement following the death of your child exchange, recognising that the language we share is a long-term condition, the second year almost always being worse than the first. You is universal and does not need words. never get over it but as one father said you do eventually discover a new kind of normal As I get older I have fewer answers to the big and the balance between sorrow and joy changes almost imperceptibly but unreliably. this happen to a family? Why for some families questions than I had at the outset. Why should are three children diagnosed with the same fatal condition? Why does a parent die in an ac- Still learning So, in a culture where the extended family has almost ceased to exist, hospice can provide an altercident leaving the other parent to care for their sick child? Why are two children in the same native. In 1982 when Helen House opened it was family diagnosed with different life-shortening the first children s hospice in the world. More than conditions? What I do know is that we can 30 years on it is exciting to see the development make a difference by being prepared to walk of the children s hospice movement on all continents. It is very important that each project is true the walk with families whose journey may to the culture of which they are a part, listening to be long and painful. What a privilege that is! children and families there who are living with the Meanwhile, 32 years on, we are still on a steep tragedy of incurable illness. I have had the privi- learning curve at Helen House. BIOGRAPHY Sister Frances Dominica OBE, DL, FRCN, FRCPCH (Hon) trained as a nurse at the Hospital for Sick Children Great Ormond Street and the Middlesex Hospital before joining the Society of All Saints, an Anglican Religious Community, where she was Mother Superior for 12 years and she is also a Trustee of Helen House. Along with her varied duties and interests, Sister Frances writes and lectures on the care of children and young people with life-shortening illnesses. She is a Deputy Lieutenant of the County of Oxfordshire, and has received Honorary Degrees from four universities. She was awarded an OBE in 2006, and received the Woman of the Year Award in 2007. NR 3 2014 I 15

Belarus Children s Hospice (BCH) feirer 20 år med gratis palliativ omsorg til syke barn og støtte til deres familier HENTET FRA HJEMMESSIDEN TIL BELARUS CHILDREN`S HOSPICE. OVERSATT AV SILJE G. TUTTUREN Anna Garchakova, direktør i BHC, jobbet som klinisk psykolog på Hviterusslands onkologiog hematologisenter når hun ble oppmerksom på at barn som fikk kreftbehandling kunne få bedre hjelp, hvis familiene var mer involvert. Sykehuset stilte et rom med tre senger til disposisjon og Anna startet sitt pionerarbeid. Etter hospitering i USA ved «Children s Hospice International», etablerte Anna BCH i den hviterussiske hovedstaden Minsk i 1994. Dette var det første barnehospicet blant de tidligere sovjetiske landene. Frem til dette ble terminale- og kronisk syke barn enten sendt hjem for å dø eller leve med sin tilstand uten tilgang på medisiner og støtte, eller de fikk behandling på store upersonlige sykehusavdelinger som ofte befant seg lagt fra familiene deres. Ryggraden i BCH sin omsorg er hjemmehospice. Barna bor hjemme omgitt av familien deres og blir ivaretatt av et dedikert team av helsepersonell fra BCH som besøker de så ofte som nødvendig. Foreldrene blir lært opp i medisinsk utstyr som ofte er gitt av BCH, og hvordan de best kan ivareta sitt/sine barn. Alle tjenester fra BCH er gratis. Anna Garchakova og Dr. Richard Hain mottar her Vittorio Ventafridda Prisen på The 1st European Congress on Paediatric Palliative Care i 2012. Foto JLOB. I dag jobber 44 leger, sykepleiere, psykologer, pleiere, innsamlere, administratorer, regnskapsførere osv. ved BCH og ivaretar rundt 240 barn og deres familier hvert år. BCH har vært en så stor suksess at det har blitt etablert flere barnehospice i Hviterussland og de driver nå med rådgivning for andre øst-europeiske land om hvordan de kan etablere tjenester innen barnepalliasjon. BCH har hatt innflytelse på dannelsen av lovgivning for barn i Hviterussland som har behov for palliativ pleie og omsorg og er nå i oppstartfasen av å bygge et nytt hospice i Minsk. 16 I BARNEPALLIASJON - den lindrende omsorgen for barn og unge

What is current in Children s Hospice? Concurrent care BY CAPRICE KNAPP, PHD AND IN THE EDITORGROUP OF THIS JOURNAL. Improving the child s quality of life Palliative care is a model of care and philosophy of care. It aims to improve quality of life from the physical, mental, and spiritual perspectives and calls on a multidisciplinary team to address these needs. For children, palliative care is a relatively new field. Born in the United Kingdom the children s palliative care movement is markedly different than that of adults. From a positive perspective children s palliative care seeks to address the needs of both the child and family. Whereas an ill child might be receiving much needed surgery in a hospital, the father might be at home with the siblings struggling to complete homework while the mother sits by the child s bedside. Life-limiting illnesses are stressors for the family as a while and must be addressed as such. For the ill child care plans must be developed that address pain and symptom management, emotional needs, and if inevitable a plan for bereavement counseling. A myriad of providers interact with families from chaplains to physicians, all with the specific aim of improving the child s quality of life. Yet, providing palliative care to children in challenging for many reasons. Hesitancy of families to accept this type of care and communication issues between primary and specialty care providers and the palliative team are just a few barriers. These barriers lie are specific to the family-provider intersect. Perhaps even more challenging from a societal perspective are barriers such as lack of funding, lack of trained health care workers, and lack of government policies that support children s palliative care. It is well known that these systematic barriers oftentimes persist for many years, and advocates work tirelessly to make inroads. When a victory is achieved, the entire children s palliative care community cheers and we all hope that others will emulate those accomplishments. In the 10 years I have been working in the field of children s palliative care I have encountered two such victories. They were not small changes. In fact, they changed the way that children s palliative care is defined and approached in the United States. Both of these victories can be referred to as concurrent care. Waiver program In July 2005 Florida became one of a small number of states to adopt concurrent care for children with life-limiting illnesses. Back then it was not called concurrent care, it was referred to as a waiver program for children with life-limiting illnesses. Florida had applied for a federal exception to waive the hospice rules for children. What that meant is that prior to 2005 the public health insurance programs in Florida would only pay for hospice or palliative care for children in the last six months of life, when a physician certified that the child was in the last six months of life, and in doing so, the child could no longer have any curative care. After the waiver, children were allowed to have curative and palliative care concurrently and they could have palliative care from the point of diagnosis onward. For the next nine years I worked with the State of Florida and the hospices that were providing care under the waiver to investigate quality of care, costs of care, access to care, and patient experiences with care. Every year we learned a bit more about care from the provider, patient, and family perspective. Some hospices stayed in the program, and some dropped out. Children also came and went in the program, and some never left. Each year the State convened a meeting to discuss the state of the program and conversations covered topics such as how many children should be included, what types of diagnoses should be considered, can we provide care in the inpatient setting or not, and if there are two providers in a region how should patients be assigned? There were many surprises over the years. For example, pain management was the lowest utilized service and emotional support the greatest. Children would disenroll and re-enroll in the program at significant rates. And oftentimes there was uncertainty on when services should be covered by hospice and when they should be covered by the child s other providers. NR 3 2014 I 17

Perhaps the greatest lessons came from the children and families. Mothers and fathers talked about how much they appreciated respite that was offered. Children were able to receive care in their homes, not at a hospice or hospital. Hospices who had little experience with children s palliative care became champions. Florida built an infrastructure to be proud of and we often received calls from other states and programs that wanted to emulate what Florida was doing. The program is still going strong today. President Obama signed the Patient Protection and Affordable Care Act But Florida s program was a demonstration or a pilot. Each year data would be collected and analyzed to justify its existence and benefits. Other than a few states, the concurrent care model did not really spread significantly over that time. While interest was certainly there, other states just were not able to replicate this model. Fast forward to March 23, 2010. President Obama signed the Patient Protection and Affordable Care Act. Later to be known as Obamacare, this act really focused on individual mandates for health care for all United States citizens and an expansion of public health insurance to cover more of the nation s uninsured population. Health care reform was attempted several times in the past by United States President s and Congressmen and was promptly met with defeat. The new law has come to define President Obama s legacy and has created a deep political divide in the country as well. But, buried deep in the legislation was Section 2302. Section 2302 called for concurrent care for children with life-limiting illnesses. Children with public health insurance were affected by this act, but not children with private health insurance. Beyond that change, the details in implementation were left up to states. The requirement also consciously uncoupled adult and child palliative care. States were required to meet the concurrent care requirements for child, regardless of what they did for adults. During the planning phase states wrestled with what services the hospices would be responsible to provide. For example if the child is prescribed a medication in the last six months of life, would that be curative or palliative? Hospices of course needed to know the answer to that and similar questions. There are threats to the implementation of the legislation. Concurrent care requires coordination between palliative and primary care providers. While there is a formal program in Florida to facilitate this coordination, Children s Medical Services Network, in most state there is not. Will hospice or primary care staff be responsible for coordinating their care? Who will pay for the time devoted to those tasks? If some services are already being provided in programs such as Home and Community Based Waivers, which programs take responsibility for palliative care? Perhaps the biggest threat to children s palliative care is that it is often discussed as a cost savings endeavor. True, there could be times when a child is not admitted to the hospital because his pain or symptoms are being managed at home. And when children are able to choose where they want to die, most choose home as opposed to the hospital. Perhaps the biggest threat to children s palliative care is that it is often discussed as a cost savings endeavor. True, there could be times when a child is not admitted to the hospital because his pain or symptoms are being managed at home. And when children are able to choose where they want to die, most choose home as opposed to the hospital. Yet, when taken at a macro-level this amount of cost savings is trivial. For adults, the argument that hospice saves money seems plausible and has been supported by the literature. For children, we should choose to justify palliative and hospice care from a framework of quality of life and not cost. There are a small number of studies looking at cost of hospice care and costs of care for children at the end of life. Having authored several of these studies I can firmly state that while I believe hospice is the best option for children in this state of health it is unwise to try and justify that solely on cost. Sometimes cost are worth it. Sometimes we as a society have to decide when we should care more about socialism than capitalism. Much of the care in the United States that is provided yields little to no marginal product of health, especially in primary care. Palliative care should not be reduced to a numbers game. There are many inefficiencies in the United States health care system, and palliative care is not the prime culprit. What is the state of children s palliative care today in USA? That remains unclear. States still struggle to implement the provision and even more so struggle to collect data on this population. Hospices in the Unites States often collect data on electronic platforms, but these are not linked to other provider types, hospitals, or home health agencies. State governments do have data on utilization through reimbursement, but they have no access to performance measures or internal data. Moving forward states will need to make investments in this type of infrastructure if they are serious about continual quality improvement of care for children and families. This too is a new phenomenon in the United States. In 2009, the federal government created its first strategy for quality for children s health care. States were requested to voluntarily report on about 25 pediatric performance measures, and some were given funds to test these measures. Sadly, there were no palliative care or symptom based measures. However, advocacy organizations have pointed out this discrepancy and there is a hope that measures will be added in the future. Concurrent care is not the final answer in the United States. Most children in this country are covered under their parent s health insurance plans and the majority of those plans are private. States must take up the fight to mandate the concurrent benefit for all health insurance in their State. This is just one area that needs to be addressed. The fight for children and their right to palliative care goes on in the United States. We must stay strong for children and their families, and stay in the ring. 18 I BARNEPALLIASJON - den lindrende omsorgen for barn og unge

Arbejdet med hospice i Danmark historien AV TOVE VIDEBÆK, FORMANN FOR HOSPICE FORUM DANMAK. Hospice Forum Danmarks formand, Tove Videbæk Hospice til folketinget I 1999 besøgte hospicechef for det første hospice i Danmark Folketinget for at tale med folketingsmedlemmer om situationen for hospice-området i Danmark. I den forbindelse inviterede hospicechefen, Inger Hee, mig på besøg på Sankt Lukas Stiftelsen for at se det hospice, som var blevet etableret i 1992 og nu havde fungeret i ca. 7 år. I denne periode havde de patienter, som kunne, betalt for opholdet. Man spurgte dog aldrig patienterne, før de blev indlagt, om de kunne betale. Alle, som havde behov for at være på hospice, var velkomne. Denne situation kunne imidlertid ikke fortsætte år efter år. Offentlige tilskud var nødvendige. Og det var det, som var hospicechefens ærinde med besøget i Folketinget. Fra dette tidspunkt var vi nogle få folketingsmedlemmer, som begyndte at arbejde med lovgivningen på området. I de følgende år etableredes dog flere hospicer, som ligesom Sankt Lukas Hospice havde et økonomisk grundlag i en stiftelse. Det var Sct. Maria Hospice, Vejle. Diakonissestiftelsens Hospice, Frederiksberg, og KamillianerGårdens Hospice i Ålborg. Ligeledes blev der i disse år i Folketinget vedtaget forskellige forslag vedr. puljer, som skulle støtte de allerede etablerede hospicer. Da jeg imidlertid vidste, at vi ikke var kommet i mål, før der var etableret lovfæstede offentlige tilskud til hospicerne, fortsatte vi kampen og fremsatte i Folketinget flere forslag, som blev nedstemt. I oktober 2003 fremsatte jeg således et forslag om at amterne skulle forpligtes til at indgå driftsoverenskomst med hospicer. Der var især to ting, som var meget vigtige for os: at et hospiceophold skulle være gratis for patienten, og at hospicerne geografisk skulle findes i hele landet. Også dette forslag blev dog nedstemt. På dette tidspunkt var der allerede opstået mange støtteforeninger, som var klar til at oprette hospicer, så snart lovgivningen gjorde det muligt. Dvs. at det andet af vore ønsker ikke ville være svært at opfylde. Det første krav var derimod vanskeligere. Da vi jo ikke selv var sundheds-fagpersoner, kontaktede jeg nøglepersoner på det palliative felt, først og fremmest Lisbeth Due Madsen, som nu er hospicechef på Arresødal Hospice i Nord-sjælland. Hun og flere andre fagpersoner hjalp os med teksten til de forslag, vi fremsatte. Finaslov træder i kraft Og så endelig - i forbindelse med finansloven (budgettet) for 2005 lykkedes det! Finansministeren var positiv, og sammen med ham blev det aftalt, at regeringen skulle fremsætte et forslag, der lignede mit forslag fra oktober 2003. Det vil sige, at alle vore ønsker blev opfyldt. Forslaget blev vedtaget d. 17. december 2004 samtidig med hele finansloven for 2005. Og vi var helt euforiske. Tænk, at det nu efter 5 års hårdt og intenst arbejde var lykkedes! Loven skulle træde i kraft d. 1. juli 2005, og herefter blomstrede hospicerne op rundt omkring i hele Danmark og har gjort det hidtil, således at vi nu er ved at have 19 hospicer med de 250 hospicepladser, som EAPC (European Association of Palliativ Care) mente, var nødvendige som et minimum for Danmark. Andre diagnoser Imidlertid har det dog vist sig, at selv om 95-97% af patienterne i disse senge er kræftpatienter, så er antallet ikke tilstrækkeligt alene til kræftpatienter. Yderligere har WHO og også den danske Sundhedsstyrelse udtalt, at mennesker med andre diagnoser som f.eks. KOLS NR 3 2014 I 19

Forst fra s 19 og hjertesygdomme ligeledes bør have mulighed for at komme på hospice. I det perspektiv udtaler EAPC, at Danmark bør have 80 pladser pr. 1 mio. indbyggere, hvilket vil sige, at vi skal have ca. 450 hospicepladser i Danmark. Dette arbejder vi nu videre med, således at alle de mennesker med livstruende sygdomme, som har behov for den specialiserede og tværfaglige indsats, som gives på hospicer, får mulighed for at komme på hospice, hvis de ønsker det. Vi har nu 19 hospicer i Danmark. I 2012 udgav Hospice Forum Danmark en bog om de første 20 år med hospice i Danmark. Den hedder: Livet før døden 20 år med hospice i Danmark. Værdien af et hospice. Et hospice kan ikke overvurderes! Adskillige artikler og udtalelser i diverse medier i Danmark har understreget, hvor værdifuld et ophold på hospice er. Der er udtalelser fra både patienter og pårørende i dusinvis af aviser, magasiner, radio- og tv-programmer. Således har journalist Anders Agger fra Danmarks Radio produceret en række TV-programmer fra Anker Fjord Hospice i Hvide Sande. Disse programmer blev kaldt Sømanden og juristen og er blevet set af hundredtusindvis af mennesker også uden for Danmark. Sømanden og juristen er meget forskellige personer, men på hospice respekteres de begge som de personer de er. Og deres pårørende respekteres på samme måde. Endvidere har filmproducenten Estephan Wagner produceret filmen En god død, som er blevet vist på TV i Danmark og i mange andre fora i og uden for Danmark. Denne film er en smuk dokumentar, som er optaget på Hospice Søndergaard i Måløv på Sjælland, om livet på hospice og værdien af hospice. I Frivillighåndbogen, som Hospice Forum Danmark udgav i 2012 nævner frivilligkoordinatorerne nogle hospice-værdier, som de mener, er værd at kæmpe videre for. Det er bl.a. kvalitet, individualitet, værdighed, tid og tryghed, tværfaglig kompetence, fleksibilitet, paradis på jord, ro, effektiv symptombehandling, trøst, åndelighed, aflastning, etik og sidst - men ikke mindst - at der er frivillige på hospice Udviklingen i Danmark positivt og negativt Udviklingen af hospice-området i Danmark har været en positiv historie. Alle hospicer har dygtige ledere, som er veluddannede og/eller videreuddannede sygeplejersker. På hvert hospice er der ansat en række sygeplejersker, en eller flere læger, præst, psykolog, fysioterapeuter, kokke, musikterapeuter m.v. og desuden er der rigtig mange frivillige tilknyttet, ca. 50-100 på hvert hospice. Disse deltager i det ekstra. De udfører ikke pleje af patienterne, men mange andre ting, som gør det ekstra hyggeligt både for patienter og pårørende på hospice. Det kan være at læse avis. Gå tur. Ordne blomster. Dække bord til måltider. Spise sammen med patienter, som har mulighed for det og ønsker det. Forberede øvrige aktiviteter. Holde i hånd. Lege med børnene osv. For at lede de frivillige og koordinere arbejdet har hvert hospice ligeledes en frivillig-koordinator, som leder og fordeler arbejdet imellem de frivillige. Hvert hospice har endvidere en hospicebestyrelse, som sørger for alt det overordnede og praktiske vedr. et hospice, og hospicelederen er den, som sørger for den daglige drift. Samtidig har hvert hospice en støtteforening, som har været med fra FØR det pågældende hospice blev etableret. Denne støtteforening arbejdede med fundraising, med planer for byggegrund, arkitekt, økonomi osv. og var med igennem hele forløbet, ind til hospicet stod klar til ibrugtagning. Herefter får støtteforeningerne en ny opgave, idet det nu er hospice-bestyrelsen, som sammen med hospicechefen overtager det overordnede lederskab af det pågældende hospice. Støtteforeningerne har nu nogle helt nye opgaver, nemlig at støtte det hospice, som er etableret og fungerer. Således involverer de sig stadigvæk i fundraising-aktiviteteter og kan dermed være med til at give hospice de evt. ekstra ting, som det har eller får behov for. Det kan være musikinstrumenter. Kunst. Ting til haven. Møbler. Arrangementer. Udflugter. Forkælelse af de frivillige. Kurser for ansatte og/eller frivillige. Osv. Hospice Forum Danmark arrangerer hvert år et seminar, som alle støtte-foreninger for hospicer bliver inviteret til. Ligeledes arrangerer Hospice Forum Danmark specielle kurser for både erfarne og nye frivillig-koordinatorer, som kommer til arbejdet med forskellige baggrunde og uddannelser. Kurserne arrangeres i tæt samarbejde med frivillig-koordinatorerne, som dels lærer nyt og dels har tid til fællesskab med hinanden på disse kurser. Forskellig sammen- sætning Hvert hospice er selvejende og bestemmer selv sammen-sætningen af personalet, hvorfor det tværfaglige team på de forskellige hospicer kan være forskelligt, afhængig af, hvordan man på det enkelte hospice prioriterer forskellige kompetencer. Selvejende betyder også non-profit. Dvs. at ingen kan hente profit eller et evt. overskud fra et hospice. Økonomiske midler og eventuelle overskud vil altid gå videre til de formål, som bestyrelsen for det konkrete hospice mener, er vigtigst for dette hospice på det pågældende tidspunkt. Uddannelse De enkelte hospicer er ligeledes optaget af at sikre, at deres personale løbende får videre uddannelse. Generelt er man dog i Danmark på hospice-området bekymret for manglen på læger, som har taget uddannelse i palliation. Der findes for få af dem. Idet palliation ikke er et speciale i Danmark, er der for få læger, der uddanner sig på dette område. Dvs. at uddannelse er et helt konkret problem, som vi fremadrettet er nødt til at gøre en ekstra indsats for at få prioriteret i Danmark. For at videreudvikle, forske og samle viden i palliation et nationalt og centralt sted var vi 5 organisationer, som i nogle år arbejdede sammen om at få et Palliativt Videncenter. Disse organisationer var Dansk Selskab for Palliativ Medicin, Foreningen for palliativ indsats i Danmark, Hospice Forum Danmark, Kræftens bekæmpelse samt Ledere for hospice og palliativ indsats. I 2008 lykkedes det ved hjælp af Trygfonden at skabe det økonomiske grundlag for dette sted. 20 I BARNEPALLIASJON - den lindrende omsorgen for barn og unge