- a national policy úram maolaitheach in Éirinn do leanaí a bhfuil...

Palliative care for children with life-limiting conditions in ireland

- A National Policy

cúram maolaitheach in Éirinn do leanaí a bhfuil riochtaí beatha-theorantacha orthu

- Beartas Náisiúnta

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Palliative care for children with life-lim

iting conditions in ireland - A National Policy

©december 2009©mí na nollag 2009

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Palliative care for children with life-limiting conditions in Ireland

- A Nat�onal Pol�cy

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Foreword by Mary Harney T.d. MInIsTer For HealTH and CHIldren

As M�n�ster for Health and Ch�ldren I welcome the publ�cat�on of th�s Pol�cy document

‘Palliative Care for Children with Life Limiting Conditions’. It seems so unnatural to th�nk

about, or have to plan for, the death of �nfants and ch�ldren but hundreds of parents

and fam�l�es go through th�s trag�c exper�ence every year. Th�s Pol�cy �s necessary to

make sure that we prov�de coherent support and care to these ch�ldren and the�r loved

ones at th�s most d�fficult t�me.

The spec�fic needs of ch�ldren w�th l�fe-l�m�t�ng cond�t�ons requ�r�ng pall�at�ve care were h�ghl�ghted �n the

‘Report of the National Advisory Committee on Palliative Care’ publ�shed by my Department �n 2001. Follow�ng on

from that, an Ir�sh nat�onal ch�ldren’s pall�at�ve care needs assessment was undertaken and publ�shed �n 2005.

The needs assessment represented the first step �n the development of a nat�onw�de cohes�ve and equ�table

pall�at�ve care serv�ce spec�fically for ch�ldren and adolescents. Th�s pol�cy a�ms to address the �ssues �dent�fied

�n the needs assessment �n order to bu�ld a respons�ve serv�ce for ch�ldren and the�r fam�l�es and prov�de a

framework w�th�n wh�ch a seamless serv�ce for ch�ldren w�th l�fe-l�m�t�ng cond�t�ons and the�r fam�l�es can be

planned, del�vered and accounted for.

I would l�ke to thank and congratulate those �nvolved �n the development of th�s Pol�cy part�cularly the work�ng

group for the�r t�me, comm�tment and hard work. I want also to acknowledge the contr�but�on of the Ir�sh

Hosp�ce Foundat�on towards mak�ng the pol�cy a real�ty, by fund�ng �n�t�ally the key med�cal staff necessary

to get Phase 1 of th�s pol�cy up and runn�ng. It �s an example of how statutory and voluntary partnersh�ps

cont�nue to work together towards the goal of enhanc�ng the l�ves of people �n rece�pt of pall�at�ve care.

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MeMbersHIP oF THe CHIldren’s PallIaTIve Care workIng grouP

Gerald�ne F�tzpatr�ck (Cha�r) Pr�nc�pal Officer, Serv�ces for Older People and Pall�at�ve Care, Department of

Health and Ch�ldren.

E�bhl�n Connolly, Deputy Ch�ef Med�cal Officer, Department of Health and Ch�ldren represent�ng the Office of

the Ch�ef Med�cal Officer.

James Conway, Ass�stant Nat�onal D�rector (Pall�at�ve Care and Chron�c Illness), Health Serv�ce Execut�ve.

S�obhan Gallagher, Consultant Paed�atr�c�an w�th a Spec�al Interest �n Commun�ty Paed�atr�cs, Letterkenny, Co

Donegal represent�ng the Faculty of Paed�atr�cs, Royal College of Phys�c�ans.

Paul Gregan, General Pract�t�oner and Consultant �n Pall�at�ve Med�c�ne represent�ng the Ir�sh Assoc�at�on of

General Pract�t�oners.

Ph�l�p Lark�n, Lecturer, School of Nurs�ng and M�dw�fery, Nat�onal Un�vers�ty of Ireland, Galway represent�ng

the Ir�sh Assoc�at�on of Pall�at�ve Care.

Jul�e L�ng, Nurse Adv�sor, Serv�ces for Older People and Pall�at�ve Care, Department of Health and Ch�ldren.

Patr�c�a McLarty, Nat�onal D�sab�l�ty Serv�ces, Health Serv�ce Execut�ve.

Eugene Murray, Ch�ef Execut�ve Officer, Ir�sh Hosp�ce Foundat�on.

Mary Murray, Paed�atr�c L�nk Nurse, Letterkenny, Co. Donegal.

D�lly O’Br�en, Ass�stant Pr�nc�pal Officer represent�ng the Office for the M�n�ster of Ch�ldren.

Maeve O’Re�lly, Consultant �n Pall�at�ve Med�c�ne, Our Lady’s Ch�ldren’s Hosp�tal, Cruml�n, Dubl�n represent�ng

the Nat�onal Counc�l for Spec�al�st Pall�at�ve Care.

Cla�re Qu�nn, Enn�s, County Clare, Serv�ce User Representat�ve.

Orla Tracey, Nat�onal Plann�ng Spec�al�st, Pr�mary Care, Health Serv�ce Execut�ve.

Presentations

The follow�ng made presentat�ons to the work�ng group:• Jack and J�ll Foundat�on, Dubl�n.• A fam�ly’s journey through paed�atr�c pall�at�ve care, Cla�re Qu�nn.• Pall�at�ve Care Team, Our Lady’s Ch�ldren’s Hosp�tal, Dubl�n.• Commun�ty Paed�atr�c Serv�ce, Letterkenny Hosp�tal, County Donegal.• Mark Br�erley, Soc�al Informat�on Systems Ltd, Chesh�re UK. • The Ch�ldren’s Sunsh�ne Home, Dubl�n.

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TerMs oF reFerenCe

Hav�ng regards to –

a) The best �nterests of ch�ldren w�th l�fe-l�m�t�ng cond�t�ons and the�r fam�l�es.

b) Relevant nat�onal and �nternat�onal research, analys�s and standards.

c) The Report of the Nat�onal Adv�sory Comm�ttee on Pall�at�ve Care (Department of Health and Ch�ldren, 2001).

d) The paed�atr�c pall�at�ve care needs assessment ( Department of Health and Ch�ldren, 2005), and the pall�at�ve care requ�rements of ch�ldren w�th mal�gnant or non-mal�gnant d�seases.

e) The newly developed systems and structures under the Health Serv�ce Execut�ve.

To examine and develop policy on:

• The pr�nc�ples underly�ng the development of spec�al�st and non-spec�al�st pall�at�ve care serv�ces for ch�ldren nat�onally and reg�onally.

• The organ�sat�on and development of an �ntegrated pall�at�ve care serv�ce for ch�ldren w�th l�fe-l�m�t�ng cond�t�ons and the�r fam�l�es �nvolv�ng both statutory and voluntary prov�ders, and �nclud�ng the del�very of care �n all sett�ngs.

• Personnel, educat�on and tra�n�ng.

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exeCuTIve suMMaryTh�s pol�cy prov�des a foundat�on upon wh�ch ch�ldren’s pall�at�ve care serv�ces can be developed �n Ireland. It �s d�v�ded �nto three sect�ons. The first sect�on defines and descr�bes pall�at�ve care for ch�ldren w�th l�fe-l�m�t�ng cond�t�ons and draws on nat�onal and �nternat�onal developments �n th�s small and h�ghly spec�al�sed field of health care. The second sect�on descr�bes serv�ces as they are currently prov�ded. The th�rd sect�on g�ves clear d�rect�on for the future development of pall�at�ve care for ch�ldren.

Ch�ldren’s pall�at�ve care has evolved from the spec�alty of paed�atr�cs rather than adult pall�at�ve care and �s an act�ve and total approach to care, embrac�ng phys�cal, emot�onal, soc�al and sp�r�tual elements. It focuses on enhanc�ng the qual�ty of l�fe for the ch�ld and prov�d�ng support for the fam�ly, and �ncludes the management of d�stress�ng symptoms, prov�s�on of resp�te and care through death and bereavement. The challenges wh�ch must be faced when car�ng for a ch�ld w�th a l�fe-l�m�t�ng cond�t�on are mult�ple and spec�fic, and d�ffer s�gn�ficantly from those relat�ng to the care of adults. Adolescents requ�r�ng pall�at�ve care have the�r own un�que needs.

A l�fe-l�m�t�ng cond�t�on �s defined as any �llness �n a ch�ld where there �s no reasonable hope of cure and from wh�ch the ch�ld or young adult w�ll d�e. Four categor�es of l�fe-l�m�t�ng cond�t�ons have been �dent�fied (Table 1). Ch�ldren w�th these cond�t�ons are l�kely to have pall�at�ve care needs.

In Ireland there are approx�mately 1400 ch�ldren l�v�ng w�th a l�fe-l�m�t�ng cond�t�on and �n the reg�on of 490 ch�ldhood deaths per year. Of ch�ldhood deaths due to l�fe-l�m�t�ng cond�t�ons, the major�ty occur �n the first year of l�fe, w�th approx�mately 350 deaths per year from l�fe-l�m�t�ng cond�t�ons.

The Report of the National Advisory Committee on Palliative Care publ�shed �n 2001, h�ghl�ghted the need for a rev�ew of ch�ldren’s pall�at�ve care serv�ces. A Palliative Care Needs Assessment for Children was undertaken and the results publ�shed �n 2005. The find�ngs of the needs assessment �n Ireland were cons�stent w�th those undertaken �n other countr�es.

Th�s pol�cy a�ms to address the �ssues �dent�fied �n the needs assessment �n order to bu�ld a respons�ve serv�ce for ch�ldren and the�r fam�l�es. A comprehens�ve ch�ldren’s pall�at�ve care serv�ce needs to funct�on w�th�n a cooperat�ve model w�th close l�a�son between general pract�t�oner, paed�atr�c�an, nurs�ng serv�ces, therap�sts and the voluntary sector. Ch�ldren’s hosp�tals and hosp�tals w�th paed�atr�c un�ts are central to the ongo�ng care and management of ch�ldren w�th l�fe-l�m�t�ng cond�t�ons. Th�s pol�cy recommends that there should be a hosp�tal-based spec�al�st pall�at�ve care team led by a Consultant Paed�atr�c�an w�th a Spec�al Interest �n Pall�at�ve Care. The pall�at�ve care serv�ce should move to the new paed�atr�c hosp�tal when �t �s operat�onal. The consultant should have access to �npat�ent beds.

In order to prov�de support to ch�ldren w�th l�fe l�m�t�ng cond�t�ons and the�r fam�l�es pr�mary care serv�ces need to be developed �nclud�ng the prov�s�on of a Consultant Paed�atr�c�an w�th a Spec�al Interest �n Pall�at�ve Care and Outreach Nurs�ng posts, therapy posts, Hosp�ce-�n-the-Home and resp�te care (both �n home and away from the home) �n each of the HSE reg�ons. These developments would be �n l�ne w�th pr�mary care/network developments. In order to plan and develop serv�ces, data collect�on �s requ�red and �t �s env�saged that the Health Serv�ce Execut�ve w�ll collect �nformat�on on ch�ldren l�v�ng w�th and dy�ng from l�fe-l�m�t�ng cond�t�ons.

The needs assessment clearly �dent�fied a need for staff to develop the competenc�es requ�red to address the pall�at�ve care needs of ch�ldren. Th�s pol�cy �dent�fies developments requ�red �n the educat�on and tra�n�ng of health care staff and carers. Bereavement serv�ces developments are also requ�red.

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A Nat�onal Development Comm�ttee for Ch�ldren’s Pall�at�ve Care should be establ�shed by the HSE �n order to prov�de a nat�onal forum for the cohes�ve, �ntegrated development of ch�ldren’s pall�at�ve care serv�ces based on populat�on need and to ensure geograph�cal un�form�ty �n the prov�s�on of serv�ces.

Th�s nat�onal pall�at�ve care pol�cy for ch�ldren a�ms to prov�de a foundat�on upon wh�ch serv�ce development can take place. In develop�ng th�s pol�cy the Department of Health and Ch�ldren a�ms to prov�de a framework w�th�n wh�ch a seamless serv�ce for ch�ldren w�th l�fe-l�m�t�ng cond�t�ons and the�r fam�l�es can be planned, del�vered and accounted for by the Health Serv�ce Execut�ve (HSE).

Table 1 - Four groups of children who are most likely to have palliative care needs.

group 1 L�fe-threaten�ng cond�t�ons for wh�ch curat�ve treatment may be feas�ble, but can fa�l. Where access to pall�at�ve care serv�ces may be necessary when treatment fa�ls ch�ldren �n long term rem�ss�on or follow�ng successful curat�ve treatment are not �ncluded. (Examples: cancer, �rrevers�ble organ fa�lures of heart, l�ver, k�dney.)

group 2 Cond�t�ons where premature death �s �nev�table, where there may be long per�ods of �ntens�ve treatment a�med at prolong�ng l�fe and allow�ng part�c�pat�on �n normal act�v�t�es. (Example: cyst�c fibros�s.)

group 3 Progress�ve cond�t�ons w�thout curat�ve treatment opt�ons, where treatment �s exclus�vely pall�at�ve and may commonly extend over many years. (Examples: Batten d�sease, mucopolysacchar�doses, muscular dystrophy.)

group 4 Irrevers�ble, but non-progress�ve cond�t�ons caus�ng severe d�sab�l�ty lead�ng to suscept�b�l�ty to health compl�cat�ons and l�kel�hood of premature death. (Examples: severe cerebral palsy, mult�ple d�sab�l�t�es such as follow�ng bra�n or sp�nal cord �nsult.)

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Table oF ConTenTs

Foreword ��

Membersh�p of the Ch�ldren’s Pall�at�ve Care Work�ng Group �v

Terms of Reference v

Execut�ve summary v��

section one - defining and describing palliative care for children 1

1. Introduct�on 2

2. Defin�t�on of ch�ldren’s pall�at�ve care 2

3. Internat�onal perspect�ve 5

4. Ir�sh context 6

5. A Pall�at�ve Care Needs Assessment for Ch�ldren (2005) 8

6. Ev�dence Based Pract�ce 10

sections Two - existing service provision in Ireland 15

1. Introduct�on 16

2. Collect�ng data 16

3. Pall�at�ve care for ch�ldren �n hosp�tals 16

4. Pall�at�ve care for ch�ldren �n the commun�ty 18

5. Resp�te 20

6. Nat�onal Ch�ldren’s Hosp�ce 21

7. Educat�on and tra�n�ng of staff 21

8. Bereavement Support 22

9. The role of the voluntary sector 22

section Three - Future provision of services 23

1. Introduct�on 24

2. Trans�t�on from pol�cy to pract�ce 24

3. Cl�n�cal Governance 25

4. Pr�nc�ples underp�nn�ng the development of ch�ldren’s pall�at�ve care 25

5. Del�very of care 26

6. Locat�on of care 31

7. Bereavement care 35

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8. Play for ch�ldren w�th l�fe-l�m�t�ng cond�t�ons 36

9. Educat�on for ch�ldren w�th l�fe-l�m�t�ng cond�t�ons 36

10. Educat�on and tra�n�ng staff 36

11. Nat�onal Development Comm�ttee for Ch�ldren’s Pall�at�ve Care 38

12. Collect�ng data on ch�ldren w�th l�fe-l�m�t�ng cond�t�ons 39

13. The �nterface between voluntary and statutory agenc�es 40

14. Workforce plann�ng 40

15. Integrated care pathway for ch�ldren and fam�l�es w�th pall�at�ve care needs 41

16. Pr�or�t�es and t�meframes 45

17. Est�mated cost of fund�ng Phase one of �mplementat�on 45

Recommendat�ons for the future development of ch�ldren’s pall�at�ve care 47

B�bl�ography 49

Glossary of Terms 52

Abbrev�at�ons 54

Append�ces 55

1

seCTIon one Defin�ng and descr�b�ng

pall�at�ve care for ch�ldren

2

seCTIon one - Defin�ng and descr�b�ng pall�at�ve care for ch�ldren

1. Introduction

Th�s sect�on defines ch�ldren’s pall�at�ve care and br�efly descr�bes �ts development both �n Ireland and �nternat�onally. The find�ngs of ‘A Palliative Care Needs Assessment for Children’ (2005) underp�n the development of future pol�cy d�rect�on for ch�ldren w�th l�fe-l�m�t�ng cond�t�ons and the key find�ngs are synops�sed and d�scussed �n th�s sect�on. Best pract�ce �n ch�ldren’s pall�at�ve care �s descr�bed and set �n the Ir�sh context. Throughout th�s document the term l�fe-l�m�t�ng w�ll be used to encompass both l�fe-l�m�t�ng and l�fe threaten�ng cond�t�ons. The term ‘ch�ld’ refers to any person under the age of e�ghteen years and w�ll �nclude all young people �nclud�ng adolescents.

2. definition of children’s palliative care

Pall�at�ve care for ch�ldren �s a develop�ng area of care that �s not yet w�dely recogn�sed as a spec�al�ty �n �ts own r�ght. Pall�at�ve care a�ms to support ch�ldren w�th l�fe-l�m�t�ng cond�t�ons and the�r fam�l�es to ma�nta�n qual�ty of l�fe. It has been defined by the World Health Organ�sat�on (WHO) as follows:

Table 2 – wHo definition of Palliative Care for Children

•Pall�at�ve care for ch�ldren �s the act�ve total care of the ch�ld’s body, m�nd and sp�r�t, and also �nvolves g�v�ng support to the fam�ly.

•It beg�ns when �llness �s d�agnosed, and cont�nues regardless of whether or not a ch�ld rece�ves treatment d�rected at the d�sease.

•Health prov�ders must evaluate and allev�ate a ch�ld’s phys�cal, psycholog�cal, and soc�al d�stress. •Effect�ve pall�at�ve care requ�res a broad �nterd�sc�pl�nary approach that �ncludes the fam�ly and makes

use of ava�lable commun�ty resources; �t can be successfully �mplemented even �f resources are l�m�ted. •It can be prov�ded �n tert�ary care fac�l�t�es, �n commun�ty health centres and even �n ch�ldren’s own

homes.

2.1 The difference between palliative care for adults and palliative care for children

Pall�at�ve care for adults �s a well-establ�shed med�cal spec�alty. The major�ty of adults currently �n rece�pt of pall�at�ve care have cancer and thus a somewhat pred�ctable d�sease trajectory and prognos�s. The needs of ch�ldren w�th l�fe-l�m�t�ng cond�t�ons d�ffer s�gn�ficantly from those of adults (Table 3). There �s an overlap between some of the needs of ch�ldren w�th l�fe-l�m�t�ng �llnesses and the care that ch�ldren w�th d�sab�l�t�es w�ll requ�re. Not all ch�ldren w�th pall�at�ve care needs w�ll requ�re specialist pall�at�ve care �nput.

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Table 3 - Childrens palliative care differs from adult palliative care as:-

•The number of ch�ldren dy�ng �s small.

•The cond�t�ons are extremely rare w�th d�agnoses spec�fic to ch�ldhood.

•Pred�ct�ng a prognos�s can be d�fficult.

•The pall�at�ve phase �s often much longer and can be ep�sod�c and unpred�ctable.

•Ch�ldren may exper�ence several apparently term�nal phases.

•Care embraces the whole fam�ly and uses a model of fam�ly-centred care.

•Parents requ�re adequate resources to support them w�th the heavy respons�b�l�ty for personal and nurs�ng care.

•S�bl�ngs are vulnerable and parents must cont�nue to prov�de care for them wh�le often prov�d�ng 24 hour care to a s�ck ch�ld.

•Cond�t�ons are somet�mes fam�l�al - other ch�ldren �n the fam�ly may be l�v�ng w�th, or have d�ed from, the same cond�t�on.

•Ch�ldrens ab�l�ty to commun�cate and understand var�es accord�ng to the�r age or stage of development.

•The prov�s�on of educat�on and play when a ch�ld �s s�ck �s essent�al.

2.2 Children’s palliative care

Ch�ldhood deaths are st�ll a rare event; therefore spec�al�st pall�at�ve care for ch�ldren �s a very small and h�ghly spec�al�sed field of healthcare. Pall�at�ve care a�ms to ma�nta�n qual�ty of l�fe for the durat�on of the ch�ld’s �llness wh�ch may be days but can be months and somet�mes years. Ch�ldren’s pall�at�ve care �s hol�st�c �n nature where the ch�ld and the�r fam�ly are v�ewed as one un�t. Most ch�ldren w�th pall�at�ve care needs w�ll have these needs met by the�r fam�ly supported by locally prov�ded serv�ces. Th�s may somet�mes, but not always, requ�re the support of a spec�al�st pall�at�ve care team.

Ideally support for ch�ldren w�th pall�at�ve care needs starts at the t�me of d�agnos�s, and for many ch�ldren w�th l�fe-l�m�t�ng cond�t�ons th�s can be at b�rth. Pall�at�ve care support can be g�ven alongs�de act�ve treatments a�med at cure or prolong�ng l�fe and should, where poss�ble, be prov�ded �n the locat�on where the ch�ld and fam�ly choose to be. Fam�l�es vary �n how strongly they w�sh to pursue treatments a�med at cure or prolong�ng l�fe. Dec�s�ons about mov�ng away from act�ve care are d�fficult for both the fam�ly and staff and should only be made follow�ng full d�scuss�on. A care plan, once dec�ded, should �nclude deta�ls of what, �f any, emergency treatment measures should be taken. The ch�ld’s comfort should always be central to the dec�s�on-mak�ng process. Parents’ w�shes should be documented and care should be planned accord�ngly. Clear commun�cat�on between parents and all healthcare profess�onals �nvolved �n the care of the ch�ld �s essent�al.

2.3 adolescence

Adolescents are d�st�nct from ch�ldren w�th d�ffer�ng needs. Adolescence �s var�ously descr�bed as rang�ng from as young as 10 to 24 years and �s arb�trar�ly d�v�ded �nto three phases, early, m�ddle and late. The boundar�es between these phases can be blurred and obv�ous d�fferences ex�st w�th regard to key �ssues such as relat�onsh�ps w�th peers, behav�our and the �mpact of a l�fe-l�m�t�ng cond�t�on. More adolescents w�th l�fe-l�m�t�ng cond�t�ons are now be�ng cared for. Th�s �s as a result of better med�cal care �nclud�ng earl�er d�agnos�s, better nutr�t�onal support and �mproved cl�n�cal �ntervent�ons wh�ch have s�gn�ficantly �mproved outcomes. The care of adolescents w�th l�fe-l�m�t�ng cond�t�ons �s challeng�ng and requ�res the ava�lab�l�ty of serv�ces to meet the�r spec�fic needs.


Palliative care for children with life-limiting conditions in Ireland - A Nat�onal Pol�cy

4

Wh�lst not all ch�ldren, w�ll be able to part�c�pate �n dec�s�on mak�ng about the�r health and care needs, where poss�ble ch�ldren should have a vo�ce. Th�s �s dependent on the ch�ld’s understand�ng, �ntellectual capac�ty, personal�ty, ethn�c, cultural and rel�g�ous background. Adolescents have a need for �ncreased autonomy and th�s must be recogn�sed �n the dec�s�on mak�ng process.

Ch�ldren w�ll have a vo�ce �n matters wh�ch affect them and the�r v�ews w�ll be g�ven due we�ght �n accordance w�th the�r age and matur�ty.

National Children’s Strategy 2000

2.3.1 The specific needs of adolescents

Challenges �n car�ng for adolescents w�th l�fe-l�m�t�ng cond�t�ons �nclude:

• A need for �nvolvement �n dec�s�on-mak�ng. Th�s can be a source of confl�ct when parents want to keep �nformat�on from the�r ch�ld.

• Attent�on to psycholog�cal needs. The needs of adolescents are spec�fic and can be complex. They may be aware of the prognos�s yet not be able to deal w�th the anx�ety and the uncerta�nty of the �llness. Psycholog�cal support �s part�cularly �mportant at the t�me of trans�t�on to adult serv�ces.

• Concerns about the�r parents and s�bl�ngs.

• The des�re for �ndependence.

• The �mportance of school, college and employment.

• The need for opportun�t�es to do th�ngs that other young people do.

• Inexper�ence of adult serv�ces �n deal�ng w�th the challenge of car�ng for adolescents.

2.3.2 Findings of the needs assessment on adolescents

In A Palliative Care Needs Assessment for Children the �ssues that were ra�sed regard�ng the care of adolescents were:

• The need for �mproved trans�t�on from paed�atr�c to adult serv�ces.

• The need for �mproved fac�l�t�es for adolescents when �n hosp�tal.

• The need for more educat�on for carers who have to deal w�th adolescents.

• Opportun�t�es for pr�vacy.

• Interact�on and commun�cat�on w�th trusted adults other than parents.

• Engagement �n collaborat�ve dec�s�on-mak�ng w�th parents and profess�onals.

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2.3.3 Transition to adult services

When mak�ng dec�s�ons w�th adolescents and the�r fam�l�es about appropr�ate care, �t �s essent�al that emot�onal and developmental age �s taken �nto cons�derat�on. Use of chronolog�cal age alone �s too s�mpl�st�c. Spec�al serv�ces are needed �n order to br�dge the gap between ch�ld-based and adult-based serv�ces. Where br�dg�ng serv�ces �s not poss�ble or appropr�ate, �t �s essent�al that necessary arrangements are �n place to ensure cont�nu�ty of serv�ce prov�s�on des�gned spec�fically to meet the needs of each �nd�v�dual young person

w�th a l�fe-l�m�t�ng cond�t�on.

key PoInT

Adolescents are d�st�nct from ch�ldren and have d�ffer�ng and spec�fic needs.

Spec�al serv�ces are needed to br�dge the gap between ch�ld-based and adult-based serv�ces.

3. International perspective

Internat�onally, ch�ldren’s pall�at�ve care has evolved from paed�atr�cs rather than adult pall�at�ve care. Th�s �s �n keep�ng w�th the United Nations Convention on the Rights of the Child, wh�ch �ns�sts that those work�ng w�th ch�ldren should first and foremost be tra�ned �n the care of ch�ldren and young people. Ir�sh pall�at�ve care pol�cy also recommends that �deally ch�ldren w�th l�fe-l�m�t�ng cond�t�ons should be cared for by staff who are tra�ned �n paed�atr�cs.

Wh�lst many countr�es are �n the process of develop�ng ch�ldren’s pall�at�ve care, the Un�ted K�ngdom (UK) has led on many of the developments �n th�s area of care. In the UK pall�at�ve care serv�ces spec�fically for ch�ldren have developed, �n�t�ally from paed�atr�c oncology serv�ces and more recently as pall�at�ve care teams �n the�r own r�ght. The Assoc�at�on for Ch�ldren w�th L�fe-threaten�ng or Term�nal Cond�t�ons and the�r Fam�l�es (ACT) and the Royal College of Paed�atr�cs and Ch�ld Health �n the UK have been �nstrumental �n produc�ng several key documents regard�ng the pall�at�ve care needs of ch�ldren wh�ch �nclude key recommendat�ons for the care of ch�ldren w�th l�fe-l�m�t�ng cond�t�ons (Append�x 1). More recently an extens�ve rev�ew of pall�at�ve care serv�ces for ch�ldren has been undertaken �n England and a nat�onal strategy has been developed. Standards for ch�ldren’s pall�at�ve care serv�ces have also been developed �n Wales. These documents have �nformed the development of th�s ch�ldren’s pall�at�ve care pol�cy �n Ireland.

key PoInT

It �s recommended that �deally, ch�ldren w�th l�fe-l�m�t�ng cond�t�ons should be cared for by staff tra�ned �n paed�atr�cs.

3.1 International needs assessments

Several countr�es or jur�sd�ct�ons, �nclud�ng Ireland, have undertaken needs assessments a�med at �dent�fy�ng the requ�rements of ch�ldren w�th l�fe-l�m�t�ng cond�t�ons and the�r fam�l�es. Regardless of country of or�g�n, healthcare system or stage of development of pall�at�ve care serv�ces, the find�ngs of the needs assessments already performed have been remarkably cons�stent (Table 4).



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Table 4 – Common findings of international needs assessments

•Locat�on of cho�ce for both ch�ldren and the�r fam�l�es �s home through �llness and ult�mately death.•Commun�ty resources currently prov�ded are �nadequate to support ch�ldren at home. •There are �nsuffic�ent essent�al resp�te serv�ces ava�lable.•Serv�ces are dependent often on geograph�cal locat�on and d�agnos�s, w�th the better developed serv�ces

often only ava�lable to ch�ldren w�th cancer. •Commun�cat�on between profess�onals �s poor and needs vast �mprovement. •There �s a need for better educat�on for all profess�onals and volunteers �nvolved �n the care of ch�ldren

w�th l�fe-l�m�t�ng cond�t�ons.

4. Irish context

Pall�at�ve care serv�ces for ch�ldren should be access�ble, equ�table, flex�ble and appropr�ate and should meet the needs of any ch�ld w�th a l�fe-l�m�t�ng cond�t�on and the�r fam�ly. Development of serv�ces should be �n l�ne w�th recommendat�ons of strategy documents and nat�onal pol�cy �nclud�ng the Health Strategy and the Pr�mary Care Strategy.

4.1 The Primary Care strategy (2001)

‘Primary Care – A New Direction (2001)’ focuses on the development of �nter-d�sc�pl�nary teams work�ng �n the commun�ty. Members of the pr�mary care team and w�der pr�mary care network w�ll prov�de serv�ces for an enrolled populat�on. Th�s model of pr�mary care represents a change �n emphas�s from secondary care to more appropr�ate pr�mary care serv�ces and requ�res new ways of work�ng to del�ver the range of serv�ces env�saged. Th�s pol�cy a�ms to prov�de appropr�ate care �n the appropr�ate sett�ng and to prov�de a serv�ce that �s respons�ve to the needs of �nd�v�duals or fam�l�es when problems or acute needs are exper�enced. Th�s should �nclude the development of further commun�ty paed�atr�c�an posts and the development of commun�ty ch�ldren’s nurs�ng serv�ces. Ch�ldren’s pall�at�ve care needs to funct�on w�th�n th�s model.

4.2 government policies in relation to children

Ch�ldren w�th l�fe-l�m�t�ng cond�t�ons have many of the same requ�rements as healthy ch�ldren and need to ma�nta�n a normal l�fe for as long as poss�ble. Ch�ldren cont�nue to grow and develop phys�cally, emot�onally and cogn�t�vely throughout the�r �llness and regardless of the stage or extent of the�r �llness, have a need for play and educat�on. Meet�ng the play and educat�onal needs of ch�ldren w�th l�fe-l�m�t�ng cond�t�ons can pose part�cular challenges and parents and teachers may need support from healthcare profess�onals around �ssues that may ar�se relat�ng to the ch�ld’s cond�t�on and how to address these. In an effort to ma�nta�n normal�ty, where poss�ble the ch�ld’s educat�on should cont�nue for as long as poss�ble at the usual locat�on.

4.3 report of the national advisory Committee on Palliative Care (2001)

The Report of the National Advisory Committee on Palliative Care �s seen as the bluepr�nt for the development of pall�at�ve care �n Ireland and has been adopted as nat�onal pol�cy. In the report, three levels of spec�al�sat�on for the structur�ng of pall�at�ve care serv�ces are �dent�fied (Table 5). These levels may play an �mportant part �n defin�ng pall�at�ve care for ch�ldren as they clearly del�neate the d�fferent roles and levels of pall�at�ve care be�ng offered to ch�ldren w�th l�fe-l�m�t�ng cond�t�ons.

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Table 5 – levels of Palliative Care specialisation

level one – Palliative Care approachPract�ce at th�s level �nvolves engagement �n the pr�nc�ples of pall�at�ve care, where requ�red, by all health care profess�onals. At th�s level many pat�ents w�ll have the�r care needs met w�thout the necess�ty of referral to spec�al�st pall�at�ve care.

level Two – general Palliative CareAt th�s level of pract�ce those prov�d�ng pall�at�ve care w�ll have add�t�onal tra�n�ng and expert�se. Th�s �s v�ewed as �ntermed�ate level expert�se, where engagement �n pall�at�ve care �s part of the health profess�onal’s car�ng role but does not define �t.

level Three – specialist Palliative CareTh�s level refers to those whose core act�v�ty �s l�m�ted to the prov�s�on of pall�at�ve care. Car�ng for pat�ents w�th complex and demand�ng pall�at�ve care needs requ�res a greater degree of tra�n�ng, staff and other resources.

4.3.1 national advisory Committee recommendations on children’s palliative care

Pall�at�ve med�c�ne was recogn�sed as a med�cal spec�alty �n Ireland �n 1995. Ch�ldren’s pall�at�ve care �s a more recent development and �s not currently recogn�sed as a d�st�nct med�cal spec�alty. Although the Nat�onal Adv�sory Comm�ttee report focused ma�nly on adult serv�ces, the comm�ttee also made recommendat�ons for ch�ldren’s pall�at�ve care (Table 6).

Table 6 - report of the national advisory Committee recommendations for children’s palliative care

•Pall�at�ve care for ch�ldren �s best prov�ded at home, except �n extraord�nary c�rcumstances, w�th the fam�ly closely supported by the GP and the PHN and also the spec�al�st pall�at�ve care team when requ�red.

•The med�cal and nurs�ng care of ch�ldren �n hosp�tal should be the respons�b�l�ty of paed�atr�c-tra�ned med�cal and nurs�ng staff w�th the support of spec�al�st pall�at�ve care serv�ces.

•There should be close co-operat�on and l�a�son between paed�atr�c and spec�al�st adult pall�at�ve care serv�ces.

•Pall�at�ve care serv�ces for ch�ldren, �nclud�ng resp�te care, should be prov�ded as close to the ch�ld’s home as poss�ble.

•Each paed�atr�c un�t should rev�ew �ts requ�rements for the prov�s�on of pall�at�ve care and resp�te care for ch�ldren �n �ts local area.

Furthermore the report suggested that the �ssues that need to be addressed �n the future plann�ng of pall�at�ve care serv�ces for ch�ldren �nclude:

• Access to spec�al�st pall�at�ve care serv�ces.• Home nurs�ng care.• Access to all�ed health profess�onal serv�ces �n the commun�ty.• Locally based resp�te.• Fam�ly support.• Bereavement support.• Educat�on and tra�n�ng of ch�ldren’s health care profess�onals.• Educat�onal needs of ch�ldren.



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key PoInT

Effect�ve pall�at�ve care requ�res the �nvolvement of an �nterd�sc�pl�nary team that �s comm�tted to work�ng together towards the ach�evement of best pract�ce.

5. a Palliative Care needs assessment for Children (2005)

The find�ngs of the Ir�sh nat�onal ch�ldren’s pall�at�ve care needs assessment were publ�shed �n 2005. Th�s document was based on the find�ngs of a research project supported by the Department of Health and Ch�ldren and the Ir�sh Hosp�ce Foundat�on wh�ch was undertaken by a team of researchers from Un�vers�ty College Dubl�n. The needs assessment h�ghl�ghted the �ssues that have to be addressed �n order to prov�de pall�at�ve care serv�ces for ch�ldren �n Ireland (Table 7).

Table 7 – key findings of the children’s palliative care needs assessment

The need for:•Equ�ty �n serv�ce prov�s�on. •Co-ord�nat�on of and access to serv�ces. •Home care and commun�ty support serv�ces to be developed. •Accurate data collect�on on prevalence and mortal�ty.•A ‘key worker’ to �mprove co-ord�nat�on of and access to serv�ces.•Educat�on, tra�n�ng and development of health care profess�onals.•Read�ly ava�lable access to locally based resp�te.•Plann�ng of the development of serv�ces.•The spec�fic needs of adolescents to be cons�dered. •A broader range of bereavement supports to be ava�lable.

5.1 Childhood deaths

The Children’s Palliative Care Needs Assessment prov�ded �nformat�on on ch�ldhood deaths �n Ireland between 1996 and 2001 (Table 8) and �dent�fied that of all deaths �n ch�ldren up to one year, 83% are due to l�fe-l�m�t�ng cond�t�ons w�th 53% occurr�ng �n the first week of l�fe. Of all ch�ldhood deaths 66% are due to l�fe-l�m�t�ng cond�t�ons. Of ch�ldhood deaths due to l�fe-l�m�t�ng cond�t�ons, 71% occur �n the first year of l�fe.

Table 8 – Mortality data for children under 18 years in Ireland 1996-2001

Number of deaths Average annual number of deaths Range per annum Average annual

rate per 10,000

All Causes 3,380 563 536-592 5.4

L�fe-l�m�t�ng cond�t�ons 2,222 370 354-398 3.6

The latest �nformat�on prov�ded by the Central Stat�st�cs Office for 2002-2004 shows that s�nce the publ�cat�on of the needs assessment there has been a decrease �n the number of ch�ldhood deaths from all causes, wh�lst the number of deaths from l�fe-l�m�t�ng cond�t�ons rema�ns almost the same at 3.5 per 10,000 (Table 9). Informat�on also �nd�cates the major�ty of ch�ldhood deaths cont�nue to occur �n the first year of l�fe.

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Table 9 – Mortality data for children under 18 years in Ireland 2002-2004

Number of deaths Average annual number of deaths Range per annum Average annual

rate per 10,000All Causes 1474 491 462-516 4.8

L�fe-l�m�t�ng cond�t�ons 1061 354 346-368 3.5

5.2 Prevalence of children with life-limiting conditions

To date, no country has a nat�onal database �dent�fy�ng ch�ldren w�th l�fe-l�m�t�ng cond�t�ons, therefore �nformat�on on the prevalence of ch�ldren who need pall�at�ve care �s l�m�ted. In the absence of th�s data, most documents and needs assessments rely on est�mates of the prevalence of l�fe-l�m�t�ng cond�t�ons. It was est�mated �n the needs assessment that there are approx�mately 1,400 ch�ldren currently l�v�ng �n Ireland w�th a l�fe-l�m�t�ng cond�t�on. There are now �nd�cat�ons that the Assoc�at�on for Ch�ldren w�th L�fe-threaten�ng or Term�nal Cond�t�ons and the�r fam�l�es (ACT) document and the Ir�sh needs assessment conta�n figures that are very l�kely to be underest�mated.

key PoInT

F�gures on the prevalence of ch�ldren w�th l�fe-l�m�t�ng cond�t�ons are l�kely to be underest�mated.

Of ch�ldhood deaths due to l�fe-l�m�t�ng cond�t�ons, 71% occur �n the first year of l�fe.

5.3 data collection

European gu�del�nes on the development of standards for paed�atr�c pall�at�ve care stress the �mportance of standard�sat�on �n the collect�on of �nformat�on on all aspects of ch�ldren’s pall�at�ve care so that compar�sons and general�sat�ons can be made between and across countr�es.

Combinations of two methods of information are currently used:

1. The Internat�onal Class�ficat�on of D�sease (ICD) codes are the preferred method of collect�ng data on ch�ldhood death (Append�x 2).

2. The categor�es of l�fe-l�m�t�ng cond�t�ons descr�bed by the ACT (Table 1).

Ch�ldren �n the four categor�es descr�bed by ACT are most l�kely to have pall�at�ve care needs at some stage �n the�r �llness. Some w�ll have long per�ods of relat�vely good health wh�lst others may need act�ve pall�at�ve care support at an earl�er stage of the�r d�sease.

key PoInT

As ch�ldren’s pall�at�ve care deals w�th relat�vely small numbers of cases �t �s �mportant to ensure standard�sat�on �n the collect�on of �nformat�on so that compar�sons and general�sat�ons can be made between and across countr�es.



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6. evidence based Practice

In order to ensure that ch�ldren w�th l�fe-l�m�t�ng cond�t�ons and the�r fam�l�es rece�ve appropr�ate and t�mely pall�at�ve care, best pract�ce must be defined. In the UK, the bas�c requ�rements of ch�ldren and fam�l�es rece�v�ng pall�at�ve care are defined �n the ACT charter (Table 10).

Table 10 – every child with a life-limiting condition and their family should expect to:

1. Have �nd�v�dual needs assessed and rece�ve care accord�ng to a care plan wh�ch �s regularly rev�ewed.

2. Be �ncluded �n the process of care plann�ng.

3. Be prov�ded w�th appropr�ate and t�mely �nformat�on.

4. Have access to a ‘key worker’ who w�ll co-ord�nate the�r hol�st�c care and l�nk serv�ces to ensure co-ord�nat�on and cont�nu�ty of care.

5. Have access to med�cal support from the�r GP and a paed�atr�c�an �n the�r local area.

6. Where poss�ble, be under the care of a spec�al�st consultant paed�atr�c�an expert �n the ch�ld’s cond�t�on.

7. Have access to a local based �nter-d�sc�pl�nary team w�th knowledge about the range of serv�ces ava�lable.

8. Be supported �n the management of the�r ch�ld’s phys�cal and emot�onal symptoms.

9. Have access to 24-hour care/adv�ce �n the term�nal stages of the�r ch�ld’s cond�t�on.

10. Rece�ve help �n meet�ng the needs of parents and s�bl�ngs dur�ng the ch�ld’s �llness and through death and bereavement.

11. Be offered regular and rel�able resp�te, e�ther �n the home or away from home as requ�red. Th�s should �nclude d�rect care or ‘hands on’ care and symptom management �f requ�red.

12. Be prov�ded w�th suppl�es of med�cat�ons, oxygen and spec�al�sed feeds and have all d�sposable �tems such as feed�ng tubes, suct�on catheters and stoma products suppl�ed regularly and effic�ently as requ�red.

13. Have access to hous�ng adaptat�ons and spec�al�st a�ds and equ�pment for use at home and school �n an effic�ent and t�mely manner.

14. Be g�ven ass�stance w�th financ�al matters �nclud�ng el�g�b�l�ty and access to benefits and grants.

6.1 who should work in children’s palliative care?

Profess�onals prov�d�ng care for ch�ldren w�th l�fe-l�m�t�ng cond�t�ons and the�r fam�l�es should be appropr�ately educated and possess the knowledge, sk�lls and competenc�es �n both car�ng for ch�ldren and pall�at�ve care. The U.K. Assoc�at�on of Ch�ldren w�th L�fe-Threaten�ng or Term�nal Cond�t�ons and the�r Fam�l�es (ACT) recommended the follow�ng competenc�es: (Table 11).

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Table 11 – Competencies required to work with children with life limiting conditions

The ab�l�ty to:•Comprehens�vely assess the needs of the ch�ld and fam�ly.•L�sten to and respect parents’ knowledge, sk�lls and cho�ces.•Deal w�th the spec�fic problems of ch�ldhood �llnesses and the�r management.•Commun�cate w�th ch�ldren and young people.•Prov�de care and support for the whole fam�ly.•Advocate on behalf of fam�l�es to secure serv�ces from other agenc�es.•Work w�th fam�l�es from d�fferent ethn�c or cultural backgrounds, fam�ly structures and bel�efs,

acknowledg�ng how each �nfluences the care of ch�ldren.•Max�m�se the ch�ld’s developmental potent�al and qual�ty of l�fe.•Proact�vely plan for l�kely problems �n the near future.

A team of staff work�ng �n ch�ldren’s pall�at�ve care also need the sk�lls to assess and manage:•Symptoms dur�ng �llness and at the end of l�fe.•Psychosoc�al problems of ch�ldren w�th l�fe-l�m�t�ng cond�t�ons and the�r fam�l�es.•The sp�r�tual needs of ch�ldren w�th l�fe-l�m�t�ng cond�t�ons and the�r fam�l�es.

And to:•Have knowledge of the fac�l�t�es ava�lable and how fam�l�es can access them.•Work effect�vely as a member of an �nterd�sc�pl�nary team.

key PoInTProfess�onals prov�d�ng care for ch�ldren w�th l�fe-l�m�t�ng cond�t�ons and the�r fam�l�es should be appropr�ately educated and possess the knowledge, sk�lls and competenc�es �n both car�ng for ch�ldren and pall�at�ve care.

6.2 education, training and development of staff

In A Palliative Care Needs Assessment for Children the need for further educat�on and tra�n�ng of staff was cons�stently ra�sed as an �ssue and the need for �nter-d�sc�pl�nary educat�on and tra�n�ng �n the follow�ng areas was �dent�fied:-

• Defin�ng pall�at�ve care and espec�ally pall�at�ve care for ch�ldren.• Symptom management and symptom control.• Informat�on on serv�ces and how to access them.• Counsell�ng and bereavement sk�lls spec�fic to ch�ldren and fam�l�es.

Pall�at�ve care �s an �nterd�sc�pl�nary spec�al�ty. The educat�on and tra�n�ng requ�rements of all members of the �nter-d�sc�pl�nary team should be addressed. Educat�on and tra�n�ng should �nclude how to ass�st and empower fam�l�es, extended fam�l�es and fr�ends to help care for the�r ch�ld.

Car�ng for a ch�ld w�th a l�fe-l�m�t�ng cond�t�on �s a rare event for many healthcare profess�onals. The challenge �s then to ensure that when the�r profess�onal competenc�es, sk�lls and knowledge are needed these are ma�nta�ned and reflect current best pract�ce. Th�s requ�res ongo�ng educat�on and tra�n�ng wh�ch �s often best prov�ded by hosp�tal staff work�ng w�th the ch�ld w�th a l�fe- l�m�t�ng cond�t�on pr�or to the�r d�scharge to the�r home or to a local paed�atr�c un�t. Clear protocols around cl�n�cal governance and scope of pract�ce need to be establ�shed.



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The need for d�ffer�ng levels of pall�at�ve educat�on for health care profess�onals has been establ�shed by the European Assoc�at�on for Pall�at�ve Care Taskforce (Table 12). The level of educat�on should be adapted to the degree of pall�at�ve care �nvolvement �n the�r pract�ce .

Table 12 – The three levels of palliative education adapted from ‘a guide for the development of Palliative nurse education in europe’

level a

BasicUndergraduate

Post graduate

New health care profess�onals dur�ng the�r �n�t�al tra�n�ngQual�fied health care profess�onals work�ng �n a general healthcare sett�ng who may be confronted w�th cond�t�ons and s�tuat�ons requ�r�ng a pall�at�ve care approach.

level b

Advanced (post graduate)

Qual�fied health care profess�onals who e�ther work �n a spec�al�sed pall�at�ve care or any general sett�ng where they fulfil the role of resource person.Qual�fied health care profess�onals who are frequently confronted by pall�at�ve care s�tuat�ons e.g. oncology, commun�ty care, paed�atr�cs and elderly care.

level C

Specialist (post graduate)

Qual�fied health care profess�onal spec�al�sts who are respons�ble for pall�at�ve care un�ts, or who offer consultancy serv�ce and/or who act�vely contr�bute to pall�at�ve educat�on and research.

key PoInT

Further educat�on and tra�n�ng of all staff work�ng w�th ch�ldren w�th l�fe-l�m�t�ng cond�t�ons must be an �ntegral part of serv�ce prov�s�on.

6.3 Quality of care

Qual�ty and cont�nuous �mprovement must be embedded �n da�ly pract�ce to ensure cons�stently h�gh standards. Qual�ty of care �s one of the four gu�d�ng pr�nc�ples of the Health Strategy wh�ch supports the development of ev�dence based standards of care, externally val�dated and set �n partnersh�p w�th consumers. The development of a qual�ty culture throughout the health care system �s the ult�mate a�m, �ntegrat�ng an �nter-d�sc�pl�nary approach to care and �ncorporat�ng the cont�nuous evaluat�on of the system us�ng techn�ques such as cl�n�cal aud�t. In order to ensure the prov�s�on of h�gh qual�ty effect�ve serv�ces wh�ch meet the needs of ch�ldren w�th l�fe-l�m�t�ng cond�t�ons and fam�l�es, �t �s �mportant to put �n place robust qual�ty assurance measures �n conjunct�on w�th cl�n�cal governance structures.

The Ir�sh Health Serv�ce Accred�tat�on Board (IHSAB) developed standards for adult pall�at�ve care serv�ces �n 2005. IHSAB has now been subsumed �nto the Health Informat�on and Qual�ty Author�ty (HIQA) wh�ch was establ�shed �n early 2007. One of the funct�ons of the Author�ty �s to develop Nat�onal Standards for Qual�ty and Safety across serv�ce sett�ngs, l�nked to the�r work on safety, qual�ty and excellence �n serv�ce prov�s�on. The Author�ty w�ll cont�nue to work w�th serv�ce prov�ders, and w�ll mon�tor compl�ance aga�nst the Nat�onal Standards, to ensure the prov�s�on of the h�ghest standard of serv�ce poss�ble.

key PoInT

In order to ensure that pall�at�ve care for ch�ldren conforms to best pract�ce, �t would be des�rable that protocols and standards, spec�fically �n relat�on to pall�at�ve care for ch�ldren, be developed.

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6.4 Integration and Co-ordination of services

A ch�ld w�th a l�fe-l�m�t�ng cond�t�on almost always has to pass through several d�fferent areas of the health serv�ces. Often these serv�ces are not connected, and th�s fragmentat�on can lead to d�fficult�es �n the ch�ld rece�v�ng appropr�ate, respons�ve and t�mely care. The �ntegrat�on and co-ord�nat�on of serv�ces �s a v�tal prerequ�s�te to prov�d�ng an effect�ve and effic�ent seamless pall�at�ve care serv�ce for ch�ldren w�th l�fe-l�m�t�ng cond�t�ons and the�r fam�l�es. Prov�d�ng cont�nu�ty of care through the �ntegrat�on of neonatal, acute paed�atr�c through to pr�mary care, secondary and tert�ary hosp�tals, voluntary serv�ces and resp�te centres requ�res knowledge of the healthcare system. A ‘key worker’ �s �dent�fied as fulfill�ng th�s role by ass�st�ng �n the nav�gat�on through the serv�ces.

6.4.1 locally based support systems

Best pract�ce d�ctates that there �s a need to ensure that appropr�ate structures are put �n place to enable ch�ldren w�th l�fe-l�m�t�ng cond�t�ons ga�n access to care at home w�th pr�or�ty g�ven to those approach�ng the end of l�fe (Table 13).

Table 13 – support at home for children with life-limiting conditions and their families

•Support of a key worker.•Med�cal support (GP and/or paed�atr�c�an). •Prov�s�on of care as requ�red (reg�stered nurses, reg�stered ch�ldren’s nurses, PHN, Therap�sts or healthcare

ass�stants).•24-hour adv�ce and support at the end of l�fe such as a ‘hosp�ce at home’ team.•Spec�al�st pall�at�ve care adv�ce.•T�mely prov�s�on of a�ds and equ�pment.•Range of flex�ble resp�te care �nclud�ng resp�te at home, or as an �n-pat�ent.

key PoInT

The �ntegrat�on and co-ord�nat�on of serv�ces �s a v�tal prerequ�s�te to prov�d�ng an effect�ve and effic�ent seamless pall�at�ve care serv�ce for ch�ldren w�th l�fe-l�m�t�ng cond�t�ons and the�r fam�l�es.

A key worker �s needed to l�nk and co-ord�nate care and serv�ces.

There should be locally based ch�ldren’s pall�at�ve care support ava�lable at network level.

6.5 bereavement care

Bereavement support �s a recogn�sed component of pall�at�ve care and part of a cont�nuum wh�ch should span pre-death to post-bereavement care (F�gure 1). Gr�ev�ng may start long before the t�me of death and support may be needed from the t�me of d�agnos�s. Although not all fam�l�es w�ll requ�re profess�onal support, a range of opt�ons and serv�ces should be ava�lable to them. Gr�ef �s a normal process and wh�lst most fam�l�es w�ll need a car�ng l�stener, most w�ll not requ�re spec�al�st help. Bereavement care should respect and support natural cop�ng.

Car�ng for a ch�ld w�th a l�fe-l�m�t�ng cond�t�on �mpacts on the whole fam�ly and can create enormous stra�n on parents, s�bl�ngs and other fam�ly members. After the death of a ch�ld, bereavement serv�ces need to be respons�ve to th�s need. Bereavement support �s �deally prov�ded by a person known to the fam�ly, such as a key worker, who has the appropr�ate tra�n�ng, superv�s�on and support and who �s able to assess and refer on to spec�al�st bereavement serv�ces �f requ�red. Bereavement educat�on and tra�n�ng should be prov�ded for all staff �nvolved �n the care of ch�ldren w�th l�fe-l�m�t�ng cond�t�ons and the�r fam�l�es.



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Figure 1 – The Bereavement Support Continuum

level one Pre-Death Care

Informat�on and Natural support

level Two Volunteer Bereavement Support Serv�ces

level ThreeProfess�onal and Spec�al�st Bereavement Serv�ces

key PoInT

There �s a need to prov�de bereavement support for the whole fam�ly �nclud�ng s�bl�ngs and to prov�de access to spec�al�st bereavement serv�ces �f requ�red.

Bereavement tra�n�ng and educat�on for all staff �nvolved �n the care of ch�ldren w�th l�fe-l�m�t�ng cond�t�ons and the�r fam�l�es should be an �ntegral part of tra�n�ng.

Spec�al�st bereavement serv�ces may be requ�red.

6.6 Care of children with life-limiting conditions from ethnic minorities

The prov�s�on of good local serv�ces can prov�de fam�l�es from a w�de range of cultural and ethn�c backgrounds w�th the care wh�ch they requ�re. Spec�fic needs of ch�ldren from d�fferent ethn�c and rel�g�ous groups should be expl�c�tly �ncluded �n the plann�ng and development of serv�ces. The HSE has recently developed an Intercultural Health Strategy wh�ch amongst other th�ngs a�ms to ensure that nat�onally there are adequate numbers of su�tably tra�ned �nterpreters ava�lable.

key PoInT

The needs of ch�ldren w�th l�fe-l�m�t�ng cond�t�ons and the�r fam�l�es who are from ethn�c m�nor�ty commun�t�es need to be cons�dered and addressed.

15

seCTIon Two Ex�st�ng serv�ce prov�s�on

�n Ireland

16

seCTIon Two - Ex�st�ng serv�ce prov�s�on �n Ireland

1. Introduction

Currently paed�atr�c�ans are prov�d�ng pall�at�ve care to ch�ldren w�th l�fe-l�m�t�ng cond�t�ons w�th�n the ex�st�ng acute and commun�ty serv�ces. Pall�at�ve care �s often del�vered through and �ntegrated w�th the ex�st�ng ch�ld health serv�ces and �n many cases th�s �ncludes the d�sab�l�ty serv�ces. Geograph�cally across the HSE serv�ces �n the commun�ty have evolved and developed d�fferently. Th�s has resulted �n reg�onal d�spar�t�es �n the del�very of serv�ce to ch�ldren w�th pall�at�ve care needs and the�r fam�l�es. Some serv�ces are del�vered d�rectly by the HSE and others contracted out to voluntary agenc�es. H�stor�cally there has been a rel�ance on the voluntary sector to fill gaps �n the pall�at�ve care serv�ces prov�ded for ch�ldren. In many cases both statutory and voluntary agenc�es currently prov�d�ng pall�at�ve care to ch�ldren are very w�ll�ng but some may lack the exper�ence and competenc�es to prov�de the level of pall�at�ve care requ�red.

2. Collecting data

A Palliative Care Needs Assessment for Children �dent�fied the need for comprehens�ve data on ch�ldren w�th l�fe-l�m�t�ng cond�t�ons to form the bas�s for serv�ce plann�ng at local and nat�onal level. The needs assessment stressed the �mportance of develop�ng an �nformat�on system, at a strateg�c level, of the number and character�st�cs of ch�ldren w�th l�fe-l�m�t�ng cond�t�ons.

A study was recently undertaken �n Ireland to assess the feas�b�l�ty of sett�ng up a database of ch�ldren l�v�ng w�th and dy�ng from l�fe-l�m�t�ng cond�t�ons. Th�s study concluded that by us�ng a comb�nat�on of the HSE ‘Hosp�tal Informat�on Pat�ent Enqu�ry’ (HIPE) system coupled w�th an exam�nat�on of death cert�ficate data �t would be poss�ble to set up a database.

3. Palliative care for children in hospitals

There are currently twenty two ch�ldren’s un�ts attached to acute hosp�tals �n Ireland and three tert�ary hosp�tals �n Dubl�n all prov�d�ng care to some ch�ldren w�th l�fe-l�m�t�ng cond�t�ons. At present there �s a ch�ldren’s pall�at�ve care team based �n Our Lady’s Ch�ldren’s Hosp�tal, Cruml�n. Ch�ldren’s pall�at�ve care �s prov�ded by an adult pall�at�ve care consultant supported by a whole t�me equ�valent ch�ldren’s pall�at�ve care cl�n�cal nurse spec�al�st. In 2007, the ‘Hosp�ce Fr�endly Hosp�tals’ programme was launched. Th�s project a�ms to �ntegrate hosp�ce pr�nc�ples �nto hosp�tal pract�ce; Our Lady’s Ch�ldren’s Hosp�tal, Cruml�n �s one of the p�lot s�tes for th�s project.

3.1 Child and family friendly hospitals

Ch�ld and fam�ly fr�endly hosp�tals are v�tal �f ch�ldren w�th l�fe-l�m�t�ng cond�t�ons and the�r fam�l�es are to rece�ve appropr�ate care.

In 2005 the Ch�ldren’s Pall�at�ve Needs Assessment �dent�fied:- • An absence of su�table accommodat�on.• A lack of resources.• A lack of pr�vacy for dy�ng ch�ldren and the�r fam�l�es.• Poor phys�cal cond�t�ons. • Staff shortages.• Insuffic�ent play act�v�t�es to meet demand.• A need to prov�de accommodat�on for parents and s�bl�ngs.

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In recent t�mes efforts have been made to �mprove hosp�tal accommodat�on for ch�ldren w�th l�fe-l�m�t�ng cond�t�ons and the�r fam�l�es. Examples of th�s are the ‘step-down’ accommodat�on fac�l�ty for ch�ldren and the�r fam�l�es (‘Ronald MacDonald House’) and the plann�ng of a new adolescent un�t - both at Our Lady’s Ch�ldren’s Hosp�tal, Cruml�n.

3.2 Play needs

Many of the ch�ldren’s un�ts �n acute hosp�tals have play spec�al�sts and some have teachers work�ng �n the un�t or as part of a school w�th�n the hosp�tal sett�ng. The �mportance of cont�nu�ng play and educat�on for ch�ldren w�th l�fe-l�m�t�ng cond�t�ons and the need to engage �n normal ch�ldhood act�v�t�es �s recogn�sed. 3.3 education needsEducat�onal needs of ch�ldren should not be locat�on dependent. Currently there are n�neteen spec�al�st teachers prov�d�ng educat�on for ch�ldren and young people w�th med�cal needs (�nclud�ng pall�at�ve care) �n ch�ldren’s hosp�tals and wards around Ireland. Ch�ldren w�th l�fe-l�m�t�ng cond�t�ons by the nature of the�r cond�t�on are frequently adm�tted to hosp�tal and many attend as pup�ls at hosp�tal school dur�ng these repeated adm�ss�ons.

Ch�ldren w�th l�fe-l�m�t�ng cond�t�ons who are at home also have a need for cont�nu�ng educat�on. Many ch�ldren w�th l�fe-l�m�t�ng cond�t�ons go back to school, even for reduced hours, �n an effort to ma�nta�n normal�ty and to soc�al�se w�th the�r peers.

3.4 national Paediatric Hospital

In June 2006, the HSE announced the find�ngs of the jo�nt HSE/Department of Health and Ch�ldren taskforce set up to determ�ne the most su�table locat�on for the new Nat�onal Paed�atr�c Hosp�tal. Th�s taskforce recommended that the hosp�tal should be developed on the Mater M�sercord�ae Un�vers�ty Hosp�tal s�te �n Dubl�n’s north �nner c�ty. In the h�gh level framework br�ef a number of stakeholders have suggested a need for a fac�l�ty w�th�n the nat�onal paed�atr�c hosp�tal for ch�ldren who are dy�ng and the�r fam�l�es that would be larger than the standard bedroom and more domest�c �n scale.

3.5 Maternity Hospitals

The Palliative Care Needs Assessment for Children, (2005) �dent�fied that most ch�ldhood deaths occur �n the first year of l�fe. The major�ty are related to congen�tal abnormal�t�es and occur �n the first week of l�fe. Currently there �s no formal spec�al�st pall�at�ve care support for any of the matern�ty un�ts �n Ireland.

key PoInT

At present there �s one spec�al�st ch�ldren’s pall�at�ve care team �n Ireland.

Ch�ld and fam�ly fr�endly hosp�tals are v�tal �f ch�ldren w�th l�fe-l�m�t�ng cond�t�ons and the�r fam�l�es are to rece�ve appropr�ate care.

As the major�ty of ch�ldhood deaths occur �n the first week of l�fe, there �s a need to prov�de pall�at�ve care support �n matern�ty hosp�tals.



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4. Palliative care for children in the community

Currently the prov�s�on of pall�at�ve care serv�ces for ch�ldren �n the commun�ty �s reflect�ve of the ch�ld’s d�agnos�s and care opt�ons ava�lable rather than the needs of ch�ldren w�th l�fe-l�m�t�ng cond�t�ons. Th�s care �s be�ng prov�ded by healthcare profess�onals across a number of d�sc�pl�nes that are employed �n the statutory or voluntary sectors.

4.1 Children with cancer

Our Lady’s Ch�ldren’s Hosp�tal, Cruml�n �s the nat�onal treatment centre for ch�ldren w�th cancer. The hosp�tal collaborates w�th s�xteen local ch�ldren’s un�ts on a shared care bas�s to treat ch�ldren w�th mal�gnancy. Ch�ldren w�th a cancer d�agnos�s and w�th pall�at�ve care needs usually have the support of spec�al�st adult pall�at�ve care serv�ces. Th�s �s often �n�t�ated dur�ng treatment through the oncology/haematology team. Ch�ldren’s Oncology L�a�son Nurses work as part of these teams and prov�de a l�nk to local adult pall�at�ve care teams. All ch�ldren have access to the support of an adult spec�al�st pall�at�ve care serv�ce. Th�s �ncludes adv�ce, homecare v�s�ts and �n except�onal c�rcumstances some adult hosp�ces, although not �deal, w�ll cons�der adm�tt�ng a ch�ld w�th a l�fe-l�m�t�ng cond�t�on.

D�rect care of ch�ldren w�th a cancer d�agnos�s �n the commun�ty �s usually prov�ded by the fam�ly w�th the support of the Publ�c Health Nurse (PHN). A pall�at�ve care nurs�ng serv�ce may also be prov�ded by voluntary agenc�es such as the Ir�sh Cancer Soc�ety who, �n the five years 2002 to 2007 prov�ded n�ght nurs�ng serv�ces to 93 ch�ldren and young people ma�nly w�th a cancer d�agnos�s aged 0-20 years. Th�s serv�ce �s usually only prov�ded for a short per�od of t�me (up to 10 n�ghts). In most cases th�s nurs�ng care �s prov�ded by reg�stered general nurses w�th e�ther pall�at�ve care exper�ence or a qual�ficat�on �n pall�at�ve care. Resp�te adm�ss�ons are arranged at the oncology/haematology ward at e�ther Our Lady’s Ch�ldren’s Hosp�tal, Cruml�n or at the local ch�ldren’s un�t.

4.2 Children with a diagnosis other than cancer

Ch�ldren w�th pall�at�ve care needs who do not have cancer may have complex d�sab�l�t�es and are often �nvolved w�th local phys�cal/sensory and learn�ng d�sab�l�ty serv�ces. Del�very of and access to these serv�ces var�es throughout the country. Serv�ces may be prov�ded d�rectly by the HSE or by voluntary agenc�es. Serv�ces prov�ded �nclude: therapy (phys�otherapy, occupat�onal therapy, speech-language therapy, and psychology), preschool, resp�te away from home, nurs�ng, and home support. Some serv�ces have spec�al schools attached that are funded by the Department of Educat�on and Sc�ence. Wh�lst some rece�ve the support of adult spec�al�st pall�at�ve care teams, they are less l�kely to do so than ch�ldren w�th cancer. S�nce 2007, the Ir�sh Hosp�ce Foundat�on has collaborated w�th the Ir�sh Cancer Soc�ety to prov�de fund�ng of a n�ght nurs�ng serv�ce to ch�ldren w�th l�fe-l�m�t�ng cond�t�ons other than cancer at the end of l�fe.

Implementat�on of the Pr�mary Care Strategy, wh�ch commenced �n 2002, w�ll �mprove and enhance the development of ch�ldren’s healthcare �n the commun�ty. Follow�ng a deta�led mapp�ng exerc�se of the ent�re HSE �t �s env�saged that there w�ll be 530 Pr�mary Care Teams and 134 Health and Soc�al Care Networks upon full �mplementat�on. These teams w�ll �n t�me compr�se a range of healthcare profess�onals who w�ll be �nvolved �n the care of ch�ldren w�th l�fe-l�m�t�ng cond�t�ons. At present there are three Commun�ty Nurs�ng Posts that prov�de �nput to ch�ldren w�th pall�at�ve care needs. These pos�t�ons also carry respons�b�l�t�es for a w�de range of ch�ldren w�th complex med�cal problems. These pos�t�ons should complement any proposed development of pall�at�ve care nurs�ng posts for ch�ldren but not replace them.

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4.3 Preferred location of death

A key find�ng of A Palliative Care Needs Assessment for Children was that the preferred locat�on of car�ng for a ch�ld w�th a l�fe-l�m�t�ng cond�t�on �s the fam�ly home w�th parents rece�v�ng adequate profess�onal support. Home was also the preferred locat�on as the eventual place of death for a ch�ld. The major�ty of ch�ldren w�th cancer d�e at home. However due to a number of factors the major�ty of ch�ldren who do not have cancer cont�nue to d�e �n hosp�tals and other healthcare �nst�tut�ons (Table 14).

Table 14 - location of death for children (0-17 years) in Ireland – 2004location of death(Cso categories)

Total number of deaths

deaths from all life-limiting conditions

deaths from cancer

Hosp�tal 143 106 13Local Author�ty Inst�tut�on (Includ�ng most d�str�ct and county hosp�tals)

140 110 0

Pr�vate homes (Reg�stered nurs�ng home, matern�ty home or convalescent home)

6 4 0

Dubl�n Matern�ty Hosp�tals 83 81 0Homes for the aged, commun�ty care, and hosp�ces 2 2 0Dom�c�l�ary 66 40 26Elsewhere 22 3 0Total 462 346 39

4.4 barriers to caring at home

The Palliative Care Needs Assessment for Children �dent�fied s�gn�ficant barr�ers to car�ng for a ch�ld at home that contr�bute to the overall “burden of care” for parents and carers (Table 15). Currently, for ch�ldren requ�r�ng complex med�cal and pall�at�ve care at home, secur�ng homecare support fund�ng can be a cumbersome and lengthy process. Fund�ng may need to be sourced through mult�ple agenc�es w�th�n both the voluntary and statutory sectors and th�s process can be d�fficult for parents and fam�l�es. Fund�ng for nurs�ng or carer’s prov�d�ng resp�te �n the home may be supported by voluntary agenc�es �n add�t�on to statutory agenc�es. Add�t�onal home support such as nurs�ng or a carer �s prov�ded by HSE commun�ty serv�ces. However, �n many cases the onus �n on the parents to find the carer or reg�stered nurse or prov�de the care themselves. Parents and fam�ly members car�ng for a ch�ld w�th complex care needs at home w�ll need educat�on and support from healthcare profess�onals.

General Pract�t�oners (GP) and Publ�c Health Nurses (PHN) are the backbone of car�ng for ch�ldren w�th l�fe-l�m�t�ng cond�t�ons �n the commun�ty. As car�ng for a ch�ld w�th a l�fe-l�m�t�ng cond�t�on �s often a rare event, �t may be a challenge for these healthcare profess�onals to ma�nta�n the requ�red sk�lls and competenc�es. For example the major�ty of PHN’s are not Reg�stered Ch�ldren’s Nurses and many have no formal tra�n�ng �n pall�at�ve care. Accord�ng to An Bord Altrana�s, of 2,286 PHN’s on the l�ve reg�ster, only 129 are also Reg�stered Ch�ldren’s Nurses. Recent changes �n nurse educat�on �n Ireland and the removal of the requ�rement for a m�dw�fery qual�ficat�on to become a PHN may result �n more Reg�stered Ch�ldren’s Nurses work�ng �n the commun�ty �n the future.



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Table 15 – barriers to caring for a child at home

•Access to a�ds and equ�pment.•Coord�nat�on of care.•Support, help w�th dec�s�on mak�ng. •F�nanc�al support.

Some ch�ldren, (part�cularly those w�th a d�agnos�s plac�ng them �n ACT category 3 or 4) have an unpred�ctable course of �llness and often progress to end-of-l�fe phase follow�ng an acute �llness such as �nfect�on. These ch�ldren tend to be adm�tted to hosp�tal w�th acute deter�orat�on and d�e �n hosp�tal as they have nurs�ng needs that cannot be supported �n the commun�ty or �n local resp�te centres.

The results of the quant�tat�ve data �n the Palliative Care Needs Assessment for Children demonstrated that the range and ava�lab�l�ty of d�sc�pl�nes �n d�fferent hosp�tals �s not suffic�ent to prov�de ch�ldren and the�r fam�l�es w�th a t�mely comprehens�ve pall�at�ve care serv�ce. The find�ngs �dent�fied �nadequacy �n the numbers and geograph�cal d�str�but�on of d�sc�pl�nes such as phys�otherapy, speech and language therapy, occupat�onal therapy, d�etet�cs, play spec�al�sts, psychology and soc�al work.

4.5 Providing co-ordination and support

Currently serv�ces for ch�ldren w�th l�fe-l�m�t�ng cond�t�ons and the�r fam�l�es vary cons�derably w�th the major�ty cared for by the fam�ly General Pract�t�oner (GP), local Publ�c Health Nurse (PHN), Paed�atr�c�an and staff at the local ch�ldren’s un�t. Ch�ldren may also rece�ve care from several other serv�ces, for example a tert�ary ch�ldren’s hosp�tal, a voluntary organ�sat�on, the local adult pall�at�ve care teams etc. Access�ng therapy serv�ces such as D�etet�cs, Occupat�onal Therapy and Speech and Language Therapy �s often d�fficult. The need for co-ord�nat�on and l�nk�ng between these groups was �dent�fied �n the Palliative Care Needs Assessment for Children.

key PoInT

For ch�ldren requ�r�ng pall�at�ve care at home, secur�ng homecare support fund�ng can be a cumbersome and lengthy process.

Fund�ng may need to be sourced through mult�ple agenc�es w�th�n both the voluntary and statutory sectors and th�s process can be d�fficult for parents and fam�l�es.

Ch�ldren tend to be adm�tted to hosp�tal w�th acute deter�orat�on and d�e �n hosp�tal as they have healthcare needs that cannot be supported �n the commun�ty.

There �s a lack of profess�onal support for staff, careg�vers and fam�l�es �n the commun�ty �n deal�ng w�th ch�ldren w�th pall�at�ve care needs.

5. respite definition of respite

The prov�s�on by appropr�ately tra�ned �nd�v�dual(s) of care for ch�ldren w�th l�fe-l�m�t�ng cond�t�ons, for a spec�fied per�od of t�me, thus prov�d�ng temporary rel�ef to the usual care-g�ver.

Currently the ava�lab�l�ty of appropr�ate, ch�ld-fr�endly and access�ble resp�te for ch�ldren w�th l�fe-l�m�t�ng cond�t�ons �s l�m�ted. There are a small number of centres both publ�c and voluntary prov�d�ng some resp�te care to ch�ldren w�th l�fe-l�m�t�ng cond�t�ons. Resp�te adm�ss�ons are also prov�ded by local ch�ldren’s un�ts �n the acute hosp�tals.

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5.1 respite for children with disabilities

Resp�te serv�ces for ch�ldren w�th d�sab�l�t�es are prov�ded �n resp�te centres or �n the home for ch�ldren who are cl�n�cally unwell.

respite for children with disabilities

Resp�te care supports people to l�ve w�th the�r fam�l�es �n the commun�ty and �s prov�ded �n res�dent�al and non-res�dent�al sett�ngs. It �ncludes recreat�onal and soc�al act�v�ty programmes, summer camps and hol�day/fam�ly breaks.

Spec�fic adm�ss�on cr�ter�a vary countryw�de, but on the whole �n order to be el�g�ble for resp�te through the d�sab�l�ty serv�ces the ch�ld has to be:

• Assessed as hav�ng a phys�cal, �ntellectual, sensory d�sab�l�ty, aut�st�c spectrum d�sorder or a comb�nat�on of these.

• The d�sab�l�ty results �n reduct�on of �ndependent funct�on to the extent that ongo�ng support �s requ�red.

• Add�t�onal care needs due to the level of d�sab�l�ty are such that support serv�ces are necessary.

Where serv�ces are operated by voluntary agenc�es, �nd�v�dual agency adm�ss�ons cr�ter�a also apply. Referral for serv�ces can come from a var�ety of sources �nclud�ng parents, self-referral, therapy teams, PHN’s, GP or schools. Prov�der agenc�es assess the ch�ld’s needs through soc�al work or serv�ce coord�nators. Some agenc�es have standard assessment mechan�sms �n place that a�m to assess for prov�s�on and subsequently meet need on an equ�table bas�s.

In general resp�te prov�s�on for ch�ldren w�th d�sab�l�t�es supports ch�ldren who are med�cally well. Very few resp�te centres are currently able to prov�de resp�te to ch�ldren who requ�re �ntens�ve med�cal or nurs�ng �nput. In-home serv�ces for ch�ldren w�th d�sab�l�t�es who are unwell maybe prov�ded by a comb�nat�on of PHN’s, care ass�stants, and reg�stered nurses. In both of these cases an �nd�v�dual package of care �s requ�red to meet the spec�fic needs of the ch�ld and the�r fam�ly. Currently demand outstr�ps supply for resp�te serv�ces for ch�ldren w�th d�sab�l�t�es and most serv�ces have wa�t�ng l�sts for new ch�ldren or for ch�ldren who are rece�v�ng serv�ces but who requ�re add�t�onal help.

key PoInTResp�te �s an �ntegral part of prov�d�ng care at home for ch�ldren w�th l�fe-l�m�t�ng cond�t�ons and the�r fam�l�es.

6. national Children’s Hospice

At th�s t�me there �s no Nat�onal Ch�ldren’s Hosp�ce �n Ireland. The recent Palliative Care Needs Assessment for Children found m�xed v�ews amongst respondents and d�d not �dent�fy the prov�s�on of a Nat�onal Hosp�ce as a current pr�or�ty.

7. education and training of staff

The Children’s Palliative Care Needs Assessment cons�stently �dent�fied a need for the further educat�on and tra�n�ng of all staff work�ng w�th ch�ldren w�th l�fe-l�m�t�ng cond�t�ons and the�r fam�l�es.

In order to meet these educat�onal requ�rements an educat�onal framework has been developed by the HSE to meet the d�ffer�ng levels of need. In�t�ally a programme (Level A) a�med at reg�stered nurses and m�dw�ves to create an awareness of the spec�al needs of ch�ldren w�th l�fe-l�m�t�ng cond�t�ons was �ntroduced and more



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recently a more advanced programme (Level B) has been del�vered. Future plans �nclude prov�d�ng educat�on to all members of the �nter-d�sc�pl�nary team. The first s�x months of the bas�c programme del�vered by the Centre for Educat�on at Our Lady’s Ch�ldren’s Hosp�tal, Cruml�n, rece�ved a pos�t�ve evaluat�on �n 2007.

Currently there �s no formal educat�onal �nput on ch�ldren’s pall�at�ve care to med�cal students or all�ed health profess�onals dur�ng the�r undergraduate programme. All undergraduate nurs�ng programmes have pall�at�ve care as part of the�r curr�culum, although th�s �s not spec�fic to the care of ch�ldren w�th l�fe-l�m�t�ng cond�t�ons.

Several un�vers�t�es around Ireland del�ver postgraduate H�gher D�ploma Programmes �n Pall�at�ve Nurs�ng, but aga�n these are not spec�fic to the care of ch�ldren w�th pall�at�ve care needs. The Ir�sh College of General Pract�t�oners currently runs a postgraduate cert�ficate course �n pall�at�ve med�c�ne for general pract�t�oners and other doctors w�th an �nterest �n pall�at�ve care prov�ded �n the commun�ty.

Educat�on programmes a�med at the development of sk�lls and competenc�es to FETAC Level 5 for healthcare ass�stants are ava�lable, although currently there �s no spec�fic ch�ldren’s pall�at�ve care module.

8. bereavement support

In Ireland some major hosp�tals have ded�cated bereavement serv�ces and many hosp�tals have posts that �nclude a bereavement rem�t. Soc�al work departments �n the tert�ary ch�ldren’s and some acute hosp�tals have a range of bereavement care for fam�l�es, �nclud�ng �nformat�on, memor�al books and serv�ces, and one-to-one and group counsell�ng. Some voluntary organ�sat�ons also prov�de bereavement serv�ces and �nformat�on.

key PoInT

Bereavement serv�ces and support need further development.

9. The role of the voluntary sector

In Ireland those currently �nvolved �n the prov�s�on of pall�at�ve care for ch�ldren �nclude statutory and voluntary organ�sat�ons of vary�ng s�ze and rem�t. Voluntary (non-statutory) organ�sat�ons have been at the forefront �n �dent�fy�ng and respond�ng to the healthcare and other needs of ch�ldren w�th l�fe-l�m�t�ng cond�t�ons �n the commun�ty and at nat�onal level. They have played a key role �n the development of pall�at�ve care and many of these developments have been �n co-operat�on or partnersh�p w�th statutory care prov�ders. The voluntary sector prov�des a w�de range of serv�ces to ch�ldren w�th l�fe-l�m�t�ng cond�t�ons and the�r fam�l�es. The ongo�ng �nvolvement of the voluntary sector �n the plann�ng and del�very of spec�al�st pall�at�ve care serv�ces �n Ireland should be encouraged and fac�l�tated by the development of a structured framework for the plann�ng and �mplementat�on of future pall�at�ve care serv�ces for ch�ldren.

key PoInT

The voluntary sector plays a large role �n the plann�ng and del�very of ch�ldren’s pall�at�ve care serv�ces �n Ireland. The ongo�ng �nvolvement of the voluntary sector �n the plann�ng and del�very of spec�al�st pall�at�ve care serv�ces �n Ireland should be encouraged and fac�l�tated.

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seCTIon THree Future prov�s�on of serv�ces

24

seCTIon THree - Future prov�s�on of serv�ces

1. Introduction

Th�s sect�on outl�nes the d�rect�on for the future prov�s�on of serv�ces for ch�ldren w�th l�fe-l�m�t�ng cond�t�ons and the�r fam�l�es. In order to meet the�r needs serv�ces must funct�on w�th�n a pr�mary care model, w�th �ntegrated commun�ty and hosp�tal-based serv�ces.

2. Transition from policy to practice

Ult�mately th�s pol�cy a�ms to ensure that all ch�ldren w�th l�fe-l�m�t�ng cond�t�ons w�ll have the cho�ce and opportun�ty to be cared for at home. Th�s �s currently poss�ble for some, but not all ch�ldren. The care of ch�ldren w�th complex med�cal needs �n the commun�ty cannot always be fac�l�tated due to a number of factors:

• Assessed level of �nd�v�dual�sed care need exceeds locally ava�lable resources.• A lack of su�tably tra�ned and qual�fied staff �n the commun�ty (even �n the presence of adequate

resources).• A lack of access to appropr�ate med�cal support and equ�pment.

Med�cal care for ch�ldren w�th l�fe-l�m�t�ng cond�t�ons �n the commun�ty should be del�vered through the pr�mary care model and w�th�n the context of serv�ces and resources that are ava�lable.

Ch�ldren approach�ng the end of l�fe w�ll be pr�or�t�sed. Wh�lst assess�ng prognos�s can be problemat�c, ch�ldren thought to have the shortest prognos�s w�ll be g�ven the greatest pr�or�ty. Ch�ldren ready for d�scharge from a tert�ary hosp�tal should �deally be transferred to a local hosp�tal or paed�atr�c un�t under the care of a locally based paed�atr�c�an pr�or to be�ng d�scharged home. Parents should be �ncluded �n the dec�s�on-mak�ng process and should be able to make an �nformed cho�ce regard�ng the d�scharge home of the�r ch�ld. An assessment of needs should be made pr�or to d�scharge and these should be matched w�th serv�ces ava�lable locally. D�scuss�ons w�th parents regard�ng care �ssues and what measures are to be taken �n the event of an emergency should form the bas�s for the ch�ld’s deta�led care plan. Dec�s�ons regard�ng prov�s�on of th�s care w�ll be made on a case by case bas�s. Wh�lst �deally th�s pol�cy should be �mplemented �n full w�th �mmed�ate effect, w�th�n the context of current financ�al constra�nts �t �s necessary to have phased �mplementat�on of the pol�cy. The pr�or�ty for th�s pol�cy �s to appo�nt key staff who w�ll lead and develop ch�ldren’s pall�at�ve care serv�ces. The second phase of �mplementat�on w�ll explore models of support�ng ch�ldren w�th l�fe-l�m�t�ng cond�t�ons throughout the d�sease trajectory.

Follow�ng publ�cat�on of th�s pol�cy the HSE should develop an �mplementat�on plan. Pr�or to and dur�ng the trans�t�on from pol�cy to pract�ce ch�ldren w�th l�fe-l�m�t�ng cond�t�ons requ�r�ng pall�at�ve care w�ll cont�nue to rece�ve ava�lable serv�ces from paed�atr�c�ans and other healthcare profess�onals. It �s �mpl�c�t that the commun�ty serv�ces personnel currently �nvolved �n the del�very of care to ch�ldren w�th l�fe-l�m�t�ng cond�t�ons rema�n central to the care of these ch�ldren. Th�s �ncludes the Commun�ty Paed�atr�c�an, GP, PHN and some of the voluntary groups. Some adult spec�al�st pall�at�ve home care teams also prov�de support and adv�ce and th�s �s espec�ally valued part�cularly �n the area of symptom management and end of l�fe care. It �s env�saged that th�s w�ll cont�nue dur�ng the trans�t�on between publ�cat�on of th�s pol�cy and �ts full �mplementat�on and �n some areas adult spec�al�st teams may cont�nue to have a role �n the care of ch�ldren requ�r�ng pall�at�ve care.

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reCoMMendaTIon

Ch�ldren w�th �mm�nent pall�at�ve care needs w�ll be pr�or�t�sed, espec�ally those near�ng the end of l�fe.

Follow�ng publ�cat�on of th�s pol�cy the HSE should develop an �mplementat�on plan.

3. Clinical governance Cl�n�cal governance �s a systemat�c approach to ma�nta�n�ng and �mprov�ng the qual�ty of pat�ent care. In l�ne w�th the recommendat�ons of the Comm�ss�on on Pat�ent Safety and Qual�ty Assurance (2008), ch�ldren w�th l�fe-l�m�t�ng cond�t�ons and the�r fam�l�es should be:

• Informed and knowledgeable about the�r care.• Rece�v�ng safe and effect�ve care from sk�lled profess�onals �n appropr�ate env�ronments w�th assessed

outcomes. • Rece�v�ng care from organ�sat�ons w�th a governance framework �n place that:

o Clearly descr�bes respons�b�l�t�es, delegated levels of author�ty, report�ng relat�onsh�ps and accountab�l�ty w�th�n the organ�sat�on.

o Places part�cular emphas�s on the clear ass�gnment and documentat�on of respons�b�l�ty w�th�n and between cl�n�cal teams �nvolved �n the care of �nd�v�dual pat�ents.

Th�s �s espec�ally �mportant �n ch�ldren’s pall�at�ve care as �t �s l�kely that a ch�ld w�th a l�fe-l�m�t�ng cond�t�on w�ll pass through and between several serv�ces (e.g. neonatal, tert�ary ch�ldren’s hosp�tal, local paed�atr�c un�t, locally-based resp�te serv�ces, pr�mary care etc.) dur�ng the�r l�fe-t�me. It �s env�saged that the development of the Outreach Nurses post w�ll ass�st �n the safe transfer and movement of ch�ldren throughout the health serv�ces.

reCoMMendaTIon

There should be clear ass�gnment and documentat�on of respons�b�l�ty w�th�n and between cl�n�cal teams �nvolved �n the care of the ch�ld w�th a l�fe-l�m�t�ng cond�t�on and the�r fam�ly.

4. Principles underpinning the development of Children’s palliative care

The Palliative Care Needs Assessment for Children suggested four pr�nc�ples that future serv�ce developments for ch�ldren w�th l�fe-l�m�t�ng cond�t�ons should encompass (Table 16) and these pr�nc�ples underp�n the recommendat�ons �n th�s sect�on.

Table 16 - Four key principles upon which all future developments in children’s palliative care should be based

1. Inclusiveness All ch�ldren regardless of culture, geograph�cal locat�on and age should be able to access appropr�ate

care. All prov�ders should have access to spec�al�st pall�at�ve care as requ�red.

2. Partnership The act�ve part�c�pat�on of all stake holders �nclud�ng the ch�ld should be fac�l�tated. Parents should be

�ncorporated as partners �n the process of dec�s�on-mak�ng and �n the plann�ng of care.

3. Comprehensiveness Care should �nclude a focus on psycholog�cal, emot�onal, educat�onal and sp�r�tual needs of a ch�ld and

h�s or her fam�ly.

4. Flexibility Care should be adaptable to the �nd�v�dual and chang�ng needs of the ch�ld and h�s or her fam�ly. H�gh

qual�ty care for ch�ldren w�th pall�at�ve needs should be prov�ded regardless of locat�on or d�agnos�s.



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5. delivery of care

In order to prov�de a pall�at�ve care serv�ce to ch�ldren w�th l�fe-l�m�t�ng cond�t�ons that adheres to the pr�nc�ples h�ghl�ghted �n the needs assessment (Table 16), some key healthcare profess�onal appo�ntments need to be made.

5.1 Consultant Paediatrician with a special Interest in Paediatric Palliative Medicine

The development of a new post of Consultant Paed�atr�c�an w�th a Spec�al Interest �n Paed�atr�c Pall�at�ve Med�c�ne would prov�de the necessary leadersh�p and d�rect�on for the future development of ch�ldren’s pall�at�ve care �n Ireland and w�ll prov�de �ntegrat�on nat�onally w�th�n ch�ldren’s serv�ces. In order to develop and susta�n a consultant–led serv�ce, the appo�ntment of a further consultant may be requ�red. The consultant post w�ll ult�mately be based at the new Nat�onal Paed�atr�c Hosp�tal and pend�ng that, at Our Lady’s Ch�ldren’s Hosp�tal, Cruml�n.

The consultant w�ll:-Clinical

• Be respons�ble for the development of a comprehens�ve �nterd�sc�pl�nary pall�at�ve care serv�ce at the New Paed�atr�c Hosp�tal.

• Prov�de cl�n�cal support and adv�ce to healthcare profess�onals and l�a�se w�th the lead paed�atr�c�an respons�ble for the care of the ch�ld and the�r fam�ly.

• Act as a further resource/support for the Ch�ldren’s Outreach Nurses (Sect�on 5.3).

Research and Education• Develop and ass�st �n the del�very of educat�on and tra�n�ng programmes.• Develop and lead on a research agenda for ch�ldren’s pall�at�ve care.

Service Development• Prov�de cl�n�cal leadersh�p for future development and profess�onal recogn�t�on of ch�ldren’s pall�at�ve

care �n Ireland, both �n hosp�tal and commun�ty sett�ngs.• Be �nvolved �n dec�s�ons relat�ng to and the development of an �ntegrated ch�ldren’s pall�at�ve care

serv�ce.

The consultant should be supported by an �nterd�sc�pl�nary team �nclud�ng a paed�atr�c reg�strar �n tra�n�ng.

reCoMMendaTIon

A Consultant Paed�atr�c�an w�th a Spec�al Interest �n Paed�atr�c Pall�at�ve Med�c�ne should be appo�nted.

The consultant should ult�mately be based at the new Nat�onal Paed�atr�c Hosp�tal, Dubl�n.

5.2 The Children’s Palliative Care Team

The pr�mary locat�on of the Consultant Paed�atr�c�an w�th a Spec�al Interest �n Paed�atr�c Pall�at�ve Care should be at the New Paed�atr�c Hosp�tal. Th�s �s l�kely to be the source of referral of most ch�ldren w�th l�fe-l�m�t�ng cond�t�ons w�th complex care needs. A Ch�ldren’s Pall�at�ve Care Team should be developed. Th�s team should be �nterd�sc�pl�nary w�th a m�n�mum staff complement of the Consultant Paed�atr�c�an w�th a Spec�al Interest �n Paed�atr�c Pall�at�ve Care and med�cal team, a hosp�tal-based cl�n�cal nurse spec�al�st, a soc�al worker and adm�n�strat�ve support, but w�th ready access to the w�der range of team members (e.g. occupat�onal therapy, phys�otherapy, mus�c therapy, play spec�al�st, d�etet�cs, speech and language therapy etc.). The Ch�ldren’s’ Pall�at�ve Care Team should prov�de a serv�ce for ch�ldren

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and the�r fam�l�es fac�ng any l�fe-l�m�t�ng cond�t�on ensur�ng the best qual�ty of care, dur�ng l�v�ng, dy�ng and bereavement.

The Consultant should have adm�tt�ng r�ghts at the Nat�onal Paed�atr�c Hosp�tal for pat�ents requ�r�ng pall�at�ve care such as complex pa�n and symptom management. In the new Nat�onal Paed�atr�c Hosp�tal there should be ded�cated rooms (w�th fam�ly fac�l�t�es) for ch�ldren w�th l�fe-l�m�t�ng cond�t�ons.

The Children’s Palliative Care Team should be:-

• Comm�tted to close partnersh�p and jo�nt work�ng w�th colleagues w�th�n the Nat�onal Paed�atr�c Hosp�tal, commun�ty based serv�ces and reg�onal hosp�tals to fac�l�tate comprehens�ve care plann�ng for ch�ldren throughout the�r �llness �nclud�ng care w�th�n the home. Th�s would �nclude the prov�s�on of consultat�on w�th matern�ty hosp�tals, reg�onal hosp�tals, paed�atr�c�ans based at the tert�ary hosp�tal, pr�mary health care teams, and commun�ty based serv�ces �nclud�ng resp�te and /or d�rect care to fam�l�es on qual�ty of l�fe, symptom management, psychosoc�al, sp�r�tual care and bereavement follow-up.

• Ded�cated to the profess�onal development of health care prov�ders car�ng for ch�ldren w�th l�fe-l�m�t�ng cond�t�ons and th�s would �nclude a comm�tment to h�gh qual�ty research, ev�dence based pract�ce and advocacy on behalf of ch�ldren and fam�l�es fac�ng l�fe-l�m�t�ng cond�t�ons.

• Prov�de cl�n�cal leadersh�p, profess�onal development and a mentor�ng role for the reg�onally based Ch�ldren’s Outreach Nurses (Sect�on 5.3). Each fam�ly of a ch�ld w�th l�fe-l�m�t�ng cond�t�on would have contact through the Outreach Nurse to the Ch�ldren’s Pall�at�ve Care Team to help co-ord�nate care.

The team, �n l�ne w�th �nternat�onal best pract�ce, should develop cl�n�cal pathways for ch�ldren requ�r�ng pall�at�ve care wh�ch should be overseen/rolled out locally by the Ch�ldren’s Outreach Nurse and local serv�ce prov�ders. Gu�del�nes for ch�ldren requ�r�ng pall�at�ve care would also need to be developed for the follow�ng sett�ngs – home, local commun�ty serv�ces, secondary and tert�ary hosp�tals.

Parents/carers and health care workers prov�d�ng care to ch�ldren w�th pall�at�ve care needs would have access to adv�ce on pall�at�ve care �ssues. Th�s would be prov�ded by the Ch�ldren’s Pall�at�ve Care Team/Ch�ldren’s Outreach Nurses on a rota bas�s w�th a nat�onal number for serv�ce out-of-hours.

reCoMMendaTIon

A Ch�ldren’s Pall�at�ve Care Team should be establ�shed at the Nat�onal Paed�atr�c Hosp�tal.

The Consultant Paed�atr�c�an w�th a Spec�al Interest �n Paed�atr�c Pall�at�ve Care should have ded�cated rooms �n the new paed�atr�c hosp�tal.

5.3 Children’s outreach nurses for Children with life-limiting Conditions - Clinical nurse specialist

A new cl�n�cal nurse spec�al�st post, Ch�ldren’s Outreach Nurse for ch�ldren w�th l�fe-l�m�t�ng cond�t�ons, has been developed. Throughout th�s sect�on th�s role w�ll be referred to as Ch�ldren’s Outreach Nurse.

The Palliative Care Needs Assessment for Children h�ghl�ghted the need for co-ord�nat�on of serv�ces, w�th �mproved commun�cat�on and l�nk�ng of serv�ces and referred to th�s co-ord�nat�ng role as a ‘key worker’. A network of Ch�ldren’s Outreach Nurses to support pat�ents and fam�l�es �n the commun�ty should be developed to fulfil th�s role. These posts should be developed to ensure equ�ty of access to serv�ces throughout the country for ch�ldren w�th l�fe-l�m�t�ng cond�t�ons and the�r fam�l�es, regardless of geograph�cal locat�on.



28

The Ch�ldren’s Outreach Nurses should be based �n Reg�onal Ch�ldren’s Un�ts �n hosp�tals throughout Ireland and would be supported cl�n�cally by a named locally based paed�atr�c�an w�th an �nterest �n pall�at�ve care. Further cl�n�cal support would be prov�ded nat�onally by the Consultant Paed�atr�c�an w�th a Spec�al Interest �n Paed�atr�c Pall�at�ve Care and the w�der network of Outreach Nurses nat�onally. Nat�onal team gu�del�nes and protocols for care management should be developed. All appo�ntments would be �n l�ne w�th a nat�onally agreed job descr�pt�on. Inter�m report�ng relat�onsh�ps would be �n accordance w�th local governance arrangements.

All ch�ldren w�th l�fe-l�m�t�ng cond�t�ons should have the�r needs �nd�v�dually assessed and a care plan developed by the Ch�ldren’s Outreach Nurse as part of the process of meet�ng the�r pall�at�ve care needs.

The role of the Children’s outreach nurse for children with life-limiting conditions will include the following:

• Co-ord�nate a serv�ce that prov�des cont�nu�ty of care and �mproves qual�ty of l�fe for ch�ldren w�th l�fe-l�m�t�ng cond�t�ons and the�r fam�l�es.

• Plan, �mplement, del�ver and evaluate care for a caseload of ch�ldren w�th l�fe-l�m�t�ng cond�t�ons and the�r fam�l�es, �n collaborat�on w�th local healthcare profess�onals/carers. Th�s role w�ll apply to both acute and commun�ty care sett�ngs.

• Fac�l�tate educat�on and tra�n�ng for health and soc�al care profess�onals �n collaborat�on w�th relevant stakeholders.

• Support the collect�on of data �n relat�on to ch�ldren w�th l�fe-l�m�t�ng cond�t�ons.

• Act as an �nformed resource and l�nk person for ch�ldren and fam�ly carers and for health and soc�al care profess�onals �nvolved �n the care of ch�ldren w�th l�fe-l�m�t�ng cond�t�ons.

• L�nk w�th PHN, Commun�ty Paed�atr�c L�nk Nurses, Adult Spec�al�st Pall�at�ve Care Teams and Voluntary organ�sat�ons (e.g. Jack and J�ll Foundat�on Nurses).

In�t�ally e�ght Ch�ldren’s Outreach Nurses should be appo�nted. Evaluat�on of these �n�t�al posts, workload of s�m�lar posts, Central Stat�st�cs Office (CSO) data on current populat�on by age and figures conta�ned �n the Children’s Palliative Care Needs Assessment may result �n further appo�ntments be�ng necessary. These posts should be allocated to ensure geograph�cal equ�ty of access to th�s serv�ce. As the role of Cl�n�cal Nurse Spec�al�st - Ch�ldren’s Outreach Nurse develops further there may be opportun�t�es for some to develop to the h�gher level of Advanced Nurse Pract�t�oner.

Further development must happen �n conjunct�on w�th developments �n pr�mary and commun�ty care, such as the development of pr�mary care teams/networks and �n part�cular, commun�ty ch�ldren’s health care serv�ces and the appo�ntment of more commun�ty paed�atr�c�ans. In some �nstances the commun�ty paed�atr�c�an �s �deally placed as the local lead cl�n�c�an �n the care of ch�ldren w�th l�fe-l�m�t�ng cond�t�ons.

The appo�ntment of Outreach Nurses should be �n l�ne w�th a nat�onally agreed job descr�pt�on. Inter�m report�ng relat�onsh�ps w�ll be �n accordance w�th local governance arrangements. For med�cal cl�n�cal support ch�ldren should substant�vely rema�n under the care of the treat�ng consultant from the�r paed�atr�c un�t of the local hosp�tal or a commun�ty paed�atr�c�an where ava�lable. Care should be supported by the GP and the local adult pall�at�ve care phys�c�an when needed. Ult�mately, a network of support and an adv�sory structure should be establ�shed under the gu�dance of the Consultant Paed�atr�c�an w�th a Spec�al Interest �n Paed�atr�c Pall�at�ve Care.

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A team approach to the del�very of care should ensure a co-ord�nated approach and would help to avo�d confus�on between and dupl�cat�on of serv�ces for both prov�ders and rec�p�ents. In part�cular, an �ntegrated approach to care between the Ch�ldren’s Outreach Nurses and the support ava�lable from voluntary groups �s requ�red. In order to ach�eve th�s �ntegrat�on, the HSE may need to fac�l�tate a re-defin�ng of roles and fund�ng arrangements for some voluntary prov�ders.

reCoMMendaTIon

Reg�onally based Ch�ldren’s Outreach Nurses for ch�ldren w�th l�fe-l�m�t�ng cond�t�ons should be appo�nted to fac�l�tate serv�ce del�very �n the commun�ty and fac�l�tate �ntegrat�on between hosp�tal, commun�ty serv�ces and spec�al�st pall�at�ve care.

5.4. Children’s ‘Hospice at Home’ serviceInternat�onal exper�ence has shown that there are several d�fferent models of hosp�ce care for ch�ldren. In order to prov�de an equ�table serv�ce w�th access to serv�ces across all geograph�c locat�ons the recommended model for ch�ldren w�th l�fe-l�m�t�ng cond�t�ons �n Ireland �s ‘Hosp�ce at Home’.

Hosp�ce at home d�ffers from hosp�tal at home. Hosp�tal at home �s a health care model that prov�des hosp�tal-level care �n a pat�ent’s home as a full subst�tute for acute hosp�tal care. Hosp�ce at home prov�des care to ch�ldren w�th pall�at�ve care needs and the�r fam�l�es �n the�r own home wh�ch accord�ng to the Children’s Palliative Care Needs Assessment �s the locat�on of cho�ce. Hosp�ce at home prov�des an alternat�ve to �npat�ent care for ch�ldren who have been appropr�ately assessed and for whom a deta�led care plan has been establ�shed w�th the �nput of the ch�ld (where appropr�ate) and the parents. Th�s care plan should �nclude deta�ls of what, �f any, emergency measures should be taken. Hosp�ce at home �s predom�nantly a nurs�ng serv�ce w�th �nter-d�sc�pl�nary team �nput prov�d�ng care and support a�med at meet�ng the assessed needs of a ch�ld w�th a l�fe-l�m�t�ng cond�t�on and the�r fam�ly. It �s a serv�ce that �s not exclus�vely confined to the end of l�fe but pr�mar�ly prov�des more �ntens�ve care and support at th�s t�me.

In add�t�on to th�s serv�ce, �npat�ent hosp�ce beds spec�fically for resp�te should be developed as part of the ch�ldren’s pall�at�ve care serv�ce. Th�s model a�ms to meet the phys�cal, psycholog�cal, developmental, emot�onal and sp�r�tual needs of the ch�ld and the�r fam�ly and the serv�ce can be supported w�th a m�x of day care, resp�te and commun�ty nurs�ng support. The co-ord�nat�on of the var�ous stakeholders �s fundamental to the �mplementat�on of th�s pol�cy. Th�s model of care w�ll be supported by spec�al�st governance procedures to cater for shared care plann�ng and serv�ce del�very.

Ch�ldren’s commun�ty nurs�ng support �s requ�red to ensure that th�s model of care �s able to meet the pall�at�ve care needs of ch�ldren w�th l�fe-l�m�t�ng cond�t�ons and the�r fam�l�es. Fam�ly members are often the pr�mary carers of ch�ldren w�th l�fe-l�m�t�ng cond�t�ons and they often need access to d�rect nurs�ng care, and resp�te, depend�ng on the complex�ty of d�agnos�s and related symptoms. Ch�ldren may go through per�ods of severe �llness requ�r�ng add�t�onal �ntens�ve support. Fam�ly and carers requ�re access to the support of reg�stered nurses, care ass�stants and home helps. Access to cont�nuous nurs�ng may also be requ�red, part�cularly when a ch�ld �s �n the term�nal phase of �llness. Some aspects of th�s care would be co-ord�nated by the Ch�ldren’s Outreach Nurse.



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The Ch�ldren’s Outreach Nurse may �n certa�n emergency s�tuat�ons prov�de d�rect nurs�ng care dur�ng pat�ent v�s�ts. However �n the ma�n, care should be prov�ded by:

• A core ‘bank’ of reg�stered nurses or carers to prov�de d�rect nurs�ng care �dent�fied �n each HSE reg�on.

• Access to the expert�se and sk�lls related to the last 24 hours of l�fe (�nclud�ng access to adv�ce and support of the adult spec�al�st pall�at�ve care team �f requ�red).

• Out of hours telephone support.

These serv�ces should be prov�ded by e�ther pr�mary care teams/networks, d�rectly by the HSE or through HSE fund�ng.

The development of teams by the HSE would take �nto cons�derat�on the needs of the local populat�on served and the number of ch�ldren w�th l�fe-l�m�t�ng cond�t�ons l�kely to ava�l of th�s serv�ce. Some of th�s �nformat�on would be prov�ded by the proposed database (see 12 below). These teams should be developed to ensure equ�ty of access to serv�ces throughout the country for ch�ldren w�th l�fe-l�m�t�ng cond�t�ons and the�r fam�l�es, regardless of geograph�cal locat�on.

5.5 Therapy services

Phys�otherapy, Occupat�onal Therapy, D�etet�cs and Speech and Language Therapy serv�ces should be ava�lable �n both the tert�ary referral centre and �n the commun�ty v�a the Pr�mary Care Team/Network. It �s essent�al that both sectors are resourced adequately to allow for appropr�ate and t�mely assessment and �ntervent�on from these therapy serv�ces. Wh�lst full t�me posts des�gnated to the spec�al�ty may not be requ�red, an appropr�ate level of comm�tment should be factored �n w�th other development posts �n serv�ce plann�ng act�v�t�es.

reCoMMendaTIon

Hosp�ce at home teams should be developed by the HSE.

Inpat�ent hosp�ce beds spec�fically for resp�te should be developed as part of a ch�ldren’s pall�at�ve care serv�ce.

Fam�ly and carers may requ�re access to:-•The support of qual�fied nurses, care ass�stants and home helps accord�ng to the�r ch�ld’s assessed needs.•D�rect nurs�ng care, and resp�te, depend�ng on the complex�ty of d�agnos�s and related symptoms.•Twenty-four hour nurs�ng, part�cularly when a ch�ld �s �n the term�nal phase of �llness.

The Ch�ldren’s Outreach Nurse should l�a�se w�th the Pr�mary Care Team and Network serv�ces �n order to plan appropr�ate care.

Ch�ldren should have access to therapy serv�ces at both hosp�tal and pr�mary care level.

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Figure 2 – The people providing care to children with life-limiting conditions

Child and Family

PrimaryCare Team

Teacher/school

HospitalPaediatrician/

disease specialist

Children’s outreach

nurse

gP and PHn

Play Spec�al�st

Soc�al Worker

Speech and Language Therap�st

Adult Spec�al�stPall�at�ve Care Team

Bereavement Support

Commun�ty Paed�atr�c�an and Nurs�ng Serv�ce

Home Resp�teCh�ldren’s Pall�at�ve Care

Team, Nat�onal Paed�atr�c Hosp�tal

D�et�c�an

Educat�on at Home

Hosp�ce at Home

Home Help

THERAPYPhys�otherapy, OT,

Speech and language,D�etet�cs

6. location of careThe locat�on of cho�ce of care for a ch�ld w�th a l�fe-l�m�t�ng cond�t�on �s the fam�ly home. In order for ch�ldren to be cared for at home �t �s necessary to put �n place as much commun�ty support as poss�ble (F�gure 2). Wh�lst acknowledg�ng that the home �s the locat�on of cho�ce for most ch�ldren w�th l�fe-l�m�t�ng cond�t�ons and the�r fam�l�es, many ch�ldren w�th l�fe-l�m�t�ng cond�t�ons requ�re pract�cal opt�ons for care elsewhere (F�gure 3).

In order for ch�ldren and the�r parents to make �nformed cho�ces �t �s essent�al that key �nformat�on about d�agnos�s and prognos�s �s g�ven �n a format that can be understood and allows parents to make dec�s�ons. In part�cular for a ch�ld w�th a l�fe-l�m�t�ng cond�t�on, dec�s�ons regard�ng locat�on of care are often dependent on the parents and the�r ab�l�ty as pr�mary carers. Pract�cal �nformat�on about the type and level of serv�ces ava�lable should be prov�ded.



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reCoMMendaTIon

Parents should be act�vely �nvolved �n the dec�s�on mak�ng and plann�ng of locat�on of care for the�r ch�ld.

Figure 3 - location of care for children with life-limiting conditions

Community services

long stay Care

Maternity Hospital or unit

Children’s unit,acute Hospital

new national Paediatric Hospital

D�sab�l�tyServ�ces

Local Ch�ldren’s Hosp�tal or Un�t

Ch�ldren’s Hosp�ce

resPITe

6.1 Children’s units in acute hospitals

Access to hosp�tal care for ch�ldren w�th pall�at�ve care needs should be flex�ble. Hosp�tals should prov�de a su�table phys�cal env�ronment for ch�ldren �nclud�ng appropr�ate accommodat�on for the ch�ld and carers, and fac�l�t�es for educat�on and play. Ch�ldren should also be g�ven �nformat�on on the�r cond�t�on that �s appropr�ate for the�r age.

Dur�ng hosp�tal adm�ss�on there should be �nterd�sc�pl�nary �nvolvement of profess�onals to plan and del�ver care. On adm�ss�on to hosp�tal, �t �s v�tal that all team members �nvolved �n the care of the ch�ld and fam�ly are aware of the care plan and ensure that the ch�ld and the�r fam�ly’s w�shes are observed. Deta�led d�scharge plann�ng should take place and �nvolve the hosp�tal, commun�ty personnel and the Outreach Nurse. The fam�ly and ch�ld should be �nvolved and be at the centre of d�scharge plann�ng at all stages.

reCoMMendaTIon

Hosp�tals should prov�de an appropr�ate env�ronment for ch�ldren w�th pall�at�ve care needs. Th�s �ncludes phys�cal env�ronment – fac�l�t�es and ward space, and profess�onal env�ronment such as staff educat�on and tra�n�ng.

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6.2 Palliative care support to maternity hospitals

As the major�ty of ch�ldhood deaths occur �n ch�ldren under the age of one year cons�derat�on needs to be g�ven to the prov�s�on of pall�at�ve care support to matern�ty hosp�tals/un�ts. The major�ty of deaths �n the first year of l�fe are from congen�tal abnormal�t�es. Neonatolog�sts requ�re the follow�ng pall�at�ve care support:

• Outreach support from the Ch�ldren’s Pall�at�ve Care Team prov�d�ng cl�n�cal gu�dance and adv�ce to doctors, nurses, therap�sts and fam�ly members car�ng for the ch�ld �nclud�ng out of hours telephone support.

• Cl�n�cal Gu�del�nes on symptom control and end of l�fe care.• Comprehens�ve d�scharge plann�ng w�th neonatal, pall�at�ve care, pr�mary care and commun�ty

serv�ces �nvolved.

reCoMMendaTIon

The Consultant Paed�atr�c�an w�th a Spec�al Interest �n Paed�atr�c Pall�at�ve Care and the team w�ll act as a resource prov�d�ng support to matern�ty hosp�tals and neonatolog�sts.

6.3 services available for children with life-limiting conditions at home 6.3.1 Primary Care Teams/network services

In both the establ�shed and proposed pr�mary care teams/network serv�ces, some grades of staff are of part�cular relevance to car�ng for ch�ldren w�th l�fe-l�m�t�ng cond�t�ons (Table 17). The pr�mary care teams and network serv�ces would be �nvolved �n the d�rect care of the ch�ld w�th a l�fe-l�m�t�ng cond�t�on w�th pall�at�ve care needs, w�ll requ�re the �nvolvement of ex�st�ng and add�t�onal �nter-d�sc�pl�nary personnel. It �s proposed that the spec�fic roles, respons�b�l�t�es and governance procedures for staff �nvolved would be agreed w�th acute hosp�tal paed�atr�c serv�ces. Ch�ldren are l�kely to ava�l of the serv�ces of the all�ed health care profess�onals attached to the Pr�mary Care Teams/Network Serv�ces. In part�cular, prompt and uncompl�cated access to a�ds and appl�ances v�a occupat�onal therapy serv�ces would prov�de ch�ldren and the�r fam�l�es w�th much needed support �n the commun�ty.

Table 17 - Health and social Care Personnel of relevance to children’s palliative care in each proposed Primary Care Team/network service

General Pract�t�oner

Nurse/M�dw�fe

Health Care Ass�stant

Home Help

Occupat�onal Therap�st

Phys�otherap�st

Soc�al Worker

Also ava�lable �n some teams/networks•Psychology.•Speech and Language Therapy.•D�etet�cs.

6.3.2 Funding of care at homeIn order to prov�de care at home there needs to be clar�ty regard�ng the fund�ng ava�lable to those car�ng for a ch�ld w�th a l�fe-l�m�t�ng cond�t�on (e.g. Long-term �llness book, Dom�c�l�ary Care Allowance, Carers Benefit, Tax Cred�ts etc.). Th�s should apply to all ch�ldren w�th l�fe-l�m�t�ng cond�t�ons and not only to those from



34

spec�fic d�sease categor�es. Access to serv�ces and fund�ng should be streaml�ned and standard�sed nat�onally so that regardless of geograph�cal locat�on fund�ng for home care support �s ava�lable �n a t�mely and equ�table manner. Each local health office should be prov�ded w�th budgets and have protocols �n place to fac�l�tate the prov�s�on of such supports. Wh�lst many ch�ldren w�th l�fe-l�m�t�ng cond�t�ons w�ll already be �n possess�on of a med�cal card, some are not. Under the Health Act, 2004, determ�nat�on of el�g�b�l�ty for med�cal cards �s the respons�b�l�ty of the HSE. The HSE has d�scret�on, �n cases of except�onal need, to prov�de ass�stance to �nd�v�duals where undue hardsh�p would otherw�se be caused. The HSE w�ll cont�nue to v�ew appl�cat�ons from ch�ldren w�th l�fe-l�m�t�ng cond�t�ons and the�r fam�l�es �n as sens�t�ve and compass�onate a manner as poss�ble.

6.3.3 specialist respite Care

In order to help fam�l�es and carers to keep a ch�ld w�th a l�fe-l�m�t�ng cond�t�on at home, access to locally based resp�te �s requ�red. A range of resp�te serv�ces should be developed for ch�ldren w�th l�fe-l�m�t�ng cond�t�ons and pall�at�ve care needs. Th�s �ncludes access to a range of flex�ble resp�te opt�ons, both w�th�n and outs�de of the home. There �s a need for new or extended serv�ces to be developed and these should �nclude statutory/voluntary partnersh�p models. Resp�te serv�ces may m�rror some of those already prov�ded through d�sab�l�ty serv�ces and �ndeed some ch�ldren w�th l�fe-l�m�t�ng cond�t�ons (generally those �n ACT Categor�es 3 and 4) already access d�sab�l�ty resp�te care.

6.3.3.1 In-Home respite

Resp�te at home may be prov�ded for a number of hours or days and should be �nclus�ve of overn�ght prov�s�on. Spec�fically tra�ned personnel (reg�stered nurses and carers) should be ava�lable for th�s serv�ce wh�ch should be prov�ded accord�ng to the �dent�fied or assessed needs of each ch�ld and fam�ly. Current �n-home resp�te serv�ces w�th add�t�onal resources may be expanded to �nclude ch�ldren w�th l�fe-l�m�t�ng cond�t�ons w�th pall�at�ve care needs.

6.3.3.2 Centre based respite

Centre-based resp�te should take account of the med�cal needs of the ch�ld �nclud�ng the management of symptoms. Each HSE area should aud�t the�r ch�ldren’s resp�te fac�l�t�es to explore the poss�b�l�ty of prov�d�ng ded�cated pall�at�ve care resp�te. Th�s may �nclude upgrad�ng of current fac�l�t�es and staff educat�on, tra�n�ng and development.

The development of non-spec�al�st hosp�ce un�ts ded�cated to the prov�s�on of resp�te care for ch�ldren w�th l�fe-l�m�t�ng cond�t�ons w�ll also be requ�red, part�cularly �n urban areas w�th h�gh dens�ty populat�ons. Fac�l�t�es should be des�gned, equ�pped and made ava�lable for defined per�ods to prov�de planned resp�te. Where these are prov�ded by the voluntary sector, serv�ce level agreements should be reached w�th the HSE.

Ch�ldren w�th l�fe-l�m�t�ng cond�t�ons who have pall�at�ve care needs requ�r�ng med�cal care may also �n some cases ava�l of resp�te adm�ss�ons �n the�r local paed�atr�c un�t or tert�ary paed�atr�c hosp�tal �f appropr�ate. Us�ng data from the database and �nternat�onal exper�ence the HSE w�ll dec�de: (See 12 below.)

•The appropr�ate bed numbers �n each of the four HSE adm�n�strat�ve areas accord�ng to populat�on need. •Staffing levels.•Educat�on and tra�n�ng of staff.

Each of the HSE areas should develop a plan for resp�te fac�l�t�es for ch�ldren w�th l�fe-l�m�t�ng cond�t�ons and the�r fam�l�es. These plans should be presented to the Nat�onal Development Comm�ttee on Ch�ldren’s Pall�at�ve Care.

35

reCoMMendaTIon

A range of resp�te serv�ces should be developed for ch�ldren w�th l�fe-l�m�t�ng cond�t�ons and pall�at�ve care needs.

Each HSE area should develop a plan for resp�te fac�l�t�es for ch�ldren w�th l�fe-l�m�t�ng cond�t�ons and the�r fam�l�es.

7. bereavement care

Bereavement supports for ch�ldren’s pall�at�ve care should be developed accord�ng to a bereavement care cont�nuum. Support should be offered at a level appropr�ate to the serv�ce user. The three levels descr�bed below requ�re that spec�fic goals and measurable object�ves are developed.

level 1: good pre-death care, information and planninggoals:

• Intervent�ons geared towards prepar�ng the fam�ly for the death and strengthen�ng the natural network should be addressed.

• Access to accurate �nformat�on about the �llness and about the gr�ev�ng process should be ava�lable for all s�bl�ng and fam�ly members.

• The role of pr�mary care/commun�ty based carers �n prov�d�ng level 1 bereavement support should be further explored.

specific actions• Training: Spec�fic bereavement tra�n�ng �s requ�red.

level 2: support servicesgoals:

• Prov�de bereavement support to s�bl�ngs and other fam�ly members.

specific actions• No cost telephone and ‘face to face’ support by well-tra�ned volunteers could be developed and

expanded as part of a comprehens�ve bereavement serv�ce for both adults and ch�ldren. • Prov�ders should demonstrate that they are work�ng to an accepted code of pract�ce.

level 3: Professional and specialist bereavement servicesgoals:

• Bereaved s�bl�ngs and fam�l�es, assessed as need�ng profess�onal �ntervent�on, should be prov�ded w�th th�s serv�ce.

• Serv�ces should be del�vered promptly, by appropr�ately tra�ned profess�onals. Serv�ces should be offered �n a locat�on conven�ent to the serv�ce user, at l�ttle or no cost.

• A standard of tra�n�ng and a code of pract�ce must be demonstrated.

specific actions• Serv�ces for adolescents and s�bl�ngs need to be developed. • Ex�st�ng serv�ce prov�ders may need to be up sk�lled to fac�l�tate and further develop the competenc�es

to meet th�s serv�ce need.• Ident�fy experts �n the field both �n Ireland and the UK who can prov�de th�s level of support.



36

Fund�ng should be made ava�lable to develop serv�ces for those fam�l�es �dent�fied as need�ng access to appropr�ate bereavement care. The Ch�ldren’s Outreach Nurse has a role �n bereavement assessment.

reCoMMendaTIon

Bereavement supports for ch�ldren’s pall�at�ve care should be developed relat�ve to defined levels and encompasses ch�ld, adult and fam�ly support.

Fund�ng should be made ava�lable to develop serv�ces for those fam�l�es �dent�fied as need�ng access to appropr�ate bereavement care.

8. Play for children with life-limiting conditions

Ch�ldren w�th l�fe-l�m�t�ng cond�t�ons have many of the same requ�rements as healthy ch�ldren and need to ma�nta�n a normal l�fe for as long as poss�ble. Ch�ldren cont�nue to grow and develop phys�cally, emot�onally and cogn�t�vely throughout the�r �llness and regardless of the stage or extent of the�r �llness, have a need for play. Play should cont�nue for as long as poss�ble and should be �ncorporated �nto the ch�ld’s care plan.

9. education for children with life-limiting conditions

As w�th play, educat�on should cont�nue for as long as poss�ble. Ch�ldren cont�nue to grow and develop phys�cally, emot�onally and cogn�t�vely throughout the�r �llness and regardless of the stage or extent of the�r �llness and the�r locat�on of care, have a need for play and educat�on wh�ch must be met as part of a comprehens�ve pall�at�ve care serv�ce.

reCoMMendaTIon

In an effort to ma�nta�n normal�ty, where poss�ble the ch�ld’s educat�on should cont�nue for as long as poss�ble at the usual locat�on.

10. education and training of staff

10.1 Professional education and training

In order to ensure that ch�ldren w�th l�fe-l�m�t�ng cond�t�ons rece�ve appropr�ate care, both bas�c and ongo�ng educat�on and tra�n�ng of staff �s essent�al. A framework ex�sts upon wh�ch ch�ldren’s pall�at�ve care educat�on programmes for all healthcare workers, profess�onal and non-profess�onal can be based. Educat�on programmes should extend to all members of the �nterd�sc�pl�nary team and where poss�ble, a mult�-profess�onal approach to educat�on should be �mplemented. Th�s could �nclude the development of a core module of �ntegrated learn�ng for all healthcare profess�onals.

• There has been a concerted effort to create and �mplement a cohes�ve and structured educat�on programme for nurses and th�s should be extended to all healthcare profess�onals.

• E-learn�ng and onl�ne learn�ng should be �ncorporated �nto a programme of educat�on.

• Cl�n�cal pract�ce �s an �mportant and essent�al component of any educat�on programme, but has cost and travel �mpl�cat�ons for those who requ�re spec�fic levels of expert�se, w�th l�m�ted opportun�ty to ga�n same �n Ireland.

• Spec�fic credence needs to be g�ven for cl�n�cal pract�ce requ�rements (or otherw�se) at level C (Table 11).

• Ch�ldren’s pall�at�ve care educat�on should be �ncorporated �n the ch�ldren’s educat�on strand �n ex�st�ng academ�c programmes.

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10.2 support staff education and training

It �s env�saged that all healthcare ass�stants would undertake educat�on and tra�n�ng programmes. Wh�lst there �s no spec�fic module on ch�ldren’s pall�at�ve care, programmes are ava�lable to FETAC level 5 on ‘car�ng for ch�ldren �n hosp�tal’ and ‘pall�at�ve care support’ e�ther of these modules prov�des a good foundat�on for healthcare ass�stants w�sh�ng to work w�th ch�ldren w�th l�fe-l�m�t�ng cond�t�ons.

• Pract�cal ‘hands-on’ tra�n�ng �s needed for non-profess�onal carers to support fam�l�es �n the home accord�ng to the care plan and under the d�rect�on of the care team respons�ble for the needs of the ch�ld and fam�ly.

• There �s a need to engage w�th Soc�al Care and Health Care Ass�stant educat�on prov�ders about modules w�th�n ex�st�ng programmes to prepare workers for th�s area of care.

• Ideally healthcare ass�stants work�ng w�th ch�ldren w�th l�fe-l�m�t�ng cond�t�ons should be e�ther work�ng towards or educated to FETAC level 5.

reCoMMendaTIon

All relevant hosp�tal and commun�ty staff should be fac�l�tated to partake �n educat�on and tra�n�ng on ch�ldren’s pall�at�ve care.

10.3 Family carers The educat�on and tra�n�ng needs of fam�l�es, extended fam�ly members, ne�ghbours and fr�ends need to be cons�dered by healthcare profess�onals. For many fam�l�es car�ng for a ch�ld at home allows for ma�ntenance of pr�vacy and avo�ds the somet�mes overwhelm�ng �ntrus�on of strangers on fam�ly l�fe. Healthcare profess�onals need to educate, empower and support fam�l�es who choose to care for the�r ch�ld themselves.

10.4 evidence based practiceResearch ensures both the appropr�ate use of resources and the prov�s�on of h�gh qual�ty cost effect�ve health care. In order to develop an ev�dence base w�th contr�but�ons from med�c�ne, nurs�ng and other d�sc�pl�nes further research �s needed �n ch�ldren’s pall�at�ve care. The development of a research culture �s essent�al and �t �s �mportant that front l�ne cl�n�cal staff support research and understand �ts �mportance.

Char�table organ�sat�ons play an �mportant role �n fund�ng educat�on and research �n pall�at�ve care. All health care profess�onals work�ng �n pall�at�ve care should have the opportun�ty to engage �n research �n order to develop ev�dence based pract�ce, lead�ng to �mproved qual�ty of care for ch�ldren w�th l�fe-l�m�t�ng cond�t�ons and the�r fam�l�es.

reCoMMendaTIon

All health care profess�onals work�ng �n pall�at�ve care should have the opportun�ty to engage �n research.

10.5 Quality assuranceEnsur�ng that serv�ces prov�ded to ch�ldren w�th l�fe-l�m�t�ng cond�t�ons and the�r fam�l�es are prov�ded to the h�ghest standard and �n an equ�table and t�mely fash�on, �s part of the role of all healthcare profess�onals. G�ven that ch�ldren’s pall�at�ve care �s such a small and h�ghly spec�al�sed field of care, serv�ces for ch�ldren w�th l�fe-l�m�t�ng cond�t�ons should be prov�ded on the bas�s of standard�sed and nat�onally agreed assessments. To ensure un�form�ty and equ�ty �n the prov�s�on of care, assessments for serv�ces, standards and protocols should all be agreed nat�onally and th�s process should be overseen by the Nat�onal Development Comm�ttee on Ch�ldren’s Pall�at�ve care.



38

reCoMMendaTIon

In order to ensure that pall�at�ve care conforms to best pract�ce, protocols and standards spec�fically �n relat�on to pall�at�ve care for ch�ldren, should be developed and should be overseen by the Nat�onal Development Comm�ttee on Ch�ldren’s Pall�at�ve care.

11. national development Committee for Children’s Palliative Care

A Nat�onal Development Comm�ttee for Ch�ldren’s Pall�at�ve Care should be establ�shed. The funct�on of th�s comm�ttee would be:

• To prov�de a nat�onal forum for the cohes�ve, �ntegrated development of ch�ldren’s pall�at�ve care serv�ces.

• To address the reg�onal adm�n�strat�ve area var�at�ons �n serv�ce prov�s�on to ch�ldren w�th l�fe-l�m�t�ng cond�t�ons and the�r fam�l�es.

11.1 MembershipThere should be 16 core members of the Nat�onal Development Comm�ttee on Ch�ldren’s Pall�at�ve Care and these should be const�tuted as follows:-

• The HSE sen�or offic�al w�th nat�onal respons�b�l�ty for Ch�ldren’s Pall�at�ve Care should be both a member and Cha�rperson of the Comm�ttee.

• One member should be a present or past user of ch�ldren’s pall�at�ve care serv�ces.• Consultant Paed�atr�c�an w�th a Spec�al Interest �n Paed�atr�c Pall�at�ve Med�c�ne.• 12 representat�ves from w�th�n the HSE, four from each reg�on �nclud�ng;

o 1 Reg�onal D�rector of Operat�ons (w�th respons�b�l�ty for pall�at�ve care), or h�s/her nom�nee;o 1 Statutory agency (cl�n�cal and profess�onals);o 1 Voluntary organ�sat�on �nvolved d�rectly or �nd�rectly �n the prov�s�on of ch�ldren’s pall�at�ve care

serv�ces w�th a Serv�ce Level Agreement w�th the HSE who �s able to represent the v�ews of the voluntary sector. Inv�ted by the Reg�onal D�rector of Operat�ons (w�th respons�b�l�ty for pall�at�ve care) and nom�nated by �nd�v�dual groups.

The CEO of the HSE would be respons�ble for the appo�ntment of the Nat�onal Development Comm�ttee for an agreed per�od of t�me. One member should also s�t on the HSE Ch�ldren’s Expert Adv�sory Group. The Comm�ttee should meet not less that tw�ce each year. Secretar�al support for the comm�ttee should be prov�ded by the HSE.

11.2 Terms of reference

The terms of reference for the Nat�onal Development Comm�ttee should �nclude:-

• Prepare and agree a nat�onal development plan based on the assessment of need and nat�onal pol�cy as set out �n th�s pol�cy document – Pall�at�ve Care for Ch�ldren w�th L�fe-L�m�t�ng Cond�t�ons �n Ireland.

• Part�c�pate �n the est�mates process and make recommendat�ons to the CEO on the allocat�on of all statutory resources (cap�tal and revenue) prov�ded by the Department of Health and Ch�ldren for new and develop�ng serv�ces.

• Encourage and part�c�pate as appropr�ate �n the evaluat�on of serv�ce del�very nat�onally �n accordance w�th the agreed m�ss�on statement.

• Prov�de an annual nat�onal commentary on ch�ldren’s pall�at�ve care to the CEO and appropr�ate Nat�onal D�rector, HSE.

• Cons�der the establ�shment of any appropr�ate support�ng adm�n�strat�ve area structures and the�r rem�t.

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reCoMMendaTIon

A Nat�onal Development Comm�ttee on ch�ldren’s pall�at�ve care should be establ�shed.

12. Collecting data on children with life-limiting conditions

A key find�ng of the Palliative Care Needs Assessment for Children was that a database would help to establ�sh the number of ch�ldren l�v�ng w�th and dy�ng from l�fe-l�m�t�ng cond�t�ons. Desp�te the �nherent challenges, follow�ng the find�ngs of a feas�b�l�ty study undertaken �n Ireland, a database of ch�ldren w�th l�fe-l�m�t�ng cond�t�ons should be comp�led. Th�s w�ll pr�mar�ly use HIPE data (measur�ng the number of hosp�tal v�s�ts made by each ch�ld) and CSO death data. It �s env�saged that �nformat�on w�ll be collected annually and that �t would �nform strateg�c serv�ce plann�ng, map serv�ce del�very and ass�st �n workforce plann�ng.

In l�ne w�th �nternat�onal best pract�ce, the Internat�onal Class�ficat�on of D�sease ten d�agnost�c codes (ICD-10) (Append�x 2) and the four categor�es �dent�fied by ACT (Table 1) would be used. Th�s would enable �nternat�onal compar�sons to be made. Once the database �s operat�onal, �t �s env�saged that data collect�on would be further refined and ta�lored spec�fically to reflect the Ir�sh context.

12.1 dataset Implementation Proposals

The HSE should establ�sh a work�ng group to assess �mplementat�on of the recommendat�ons of the feas�b�l�ty study report and would address such �ssues as:

• T�meframe and membersh�p.• The recommended data �tems.• The relevance of d�fferent ICD-10 codes.• Calculat�on for extract�ng data from HIPE system. • Processes for engag�ng w�th the Health Informat�on Un�t/Econom�c and Soc�al Research Inst�tute to

extract HIPE data.• Processes for engag�ng w�th the Central Stat�st�cs Office for Death Cert�ficate data.

The Health Intell�gence Un�t (HIU) �n the HSE would be respons�ble for extract�ng defined data on ch�ldren w�th l�fe-l�m�t�ng cond�t�ons. Th�s data should rema�n w�th�n the HSE structures and be used proact�vely to plan serv�ces for ch�ldren w�th l�fe-l�m�t�ng cond�t�ons.

The resources required to progress this include:

• HIU - Requ�red resources would need to be put �n place, the terms of reference for th�s p�ece of work �mpl�es that the act�v�t�es would be embedded �n HSE act�v�ty. If requ�red, an �n�t�al start-up grant to the HIU w�th the �ntent�on of the HIU �ncorporat�ng these data exerc�ses �nto the�r usual work �n the long term may be explored.

• A secretar�at and adm�n�strat�ve support for the meet�ngs and consensus bu�ld�ng exerc�ses of the subgroup.

• Consultat�on w�th �nternat�onal experts on the development of ch�ldren’s pall�at�ve care serv�ces for Ireland.

The HIU �s part of HSE Populat�on Health Intell�gence Department and the normal HSE governance would apply. Reports would be made to the Management Team through the Ass�stant Nat�onal D�rector (Chron�c Illness and Pall�at�ve Care).



40

reCoMMendaTIon

Data on ch�ldren l�v�ng w�th and dy�ng from l�fe-l�m�t�ng cond�t�ons should be collected by the HSE.

13. The interface between voluntary and statutory agencies.

The HSE and the voluntary agenc�es need to cont�nue to develop closer work�ng relat�onsh�ps. Th�s �s part�cularly �mportant �n dec�d�ng how local pr�or�t�es are to be dec�ded and del�vered. The voluntary sector wh�le reta�n�ng the�r autonomy should form part of an �ntegrated framework for health care prov�s�on for the adm�n�strat�ve areas. Serv�ce level agreements should form the bas�s of future work�ng relat�onsh�ps between the HSE and all voluntary prov�ders of pall�at�ve care to ch�ldren w�th l�fe-l�m�t�ng cond�t�ons. The use of serv�ce level agreements should prov�de a means to establ�sh safeguards and reassurances for both. The process should respect the �ndependent �dent�ty and operat�onal autonomy of �nd�v�dual voluntary serv�ces prov�ders and respect the statutory, regulatory and publ�c accountab�l�ty respons�b�l�t�es of the HSE and the M�n�ster for Health and Ch�ldren.

reCoMMendaTIonThe HSE and the voluntary agenc�es should cont�nue to develop closer work�ng relat�onsh�ps around car�ng for ch�ldren w�th l�fe-l�m�t�ng cond�t�ons. The voluntary sector wh�le reta�n�ng the�r autonomy should form part of an �ntegrated framework for the adm�n�strat�ve areas. Serv�ce level agreements should form the bas�s of future work�ng relat�onsh�ps between the HSE and all voluntary pall�at�ve care serv�ce prov�ders.

14. workforce planningFuture developments �n ch�ldren’s pall�at�ve care must take account of the need for structured workforce plann�ng �n order to prov�de equ�table, effect�ve, susta�nable and safe serv�ce del�very to ch�ldren w�th l�fe-l�m�t�ng cond�t�ons and the�r fam�l�es. An �ntegrated approach to workforce plann�ng �s needed to l�nk strateg�c pol�cy object�ves and focus on the sk�lls and competenc�es requ�red to ach�eve these object�ves. The supply and demand for staff should be exam�ned together w�th the ex�st�ng and any add�t�onal tra�n�ng requ�rements, wh�ch should be met by the educat�on systems both at undergraduate and postgraduate level.

The �ntroduct�on of a database of ch�ldren w�th l�fe-l�m�t�ng cond�t�ons would ass�st �n workforce plann�ng. At present Ireland has �nsuffic�ent numbers of su�tably educated and exper�enced profess�onals ava�lable to take up lead pos�t�ons �n th�s spec�al�sed and develop�ng area of ch�ldren’s health care. In order to beg�n the process of develop�ng pall�at�ve care serv�ces for ch�ldren w�th l�fe-l�m�t�ng cond�t�ons and to susta�n the development of the spec�al�ty, key med�cal and nurs�ng appo�ntments need to be made �n the first �nstance.

reCoMMendaTIonThe supply and demand for staff should be exam�ned together w�th the ex�st�ng and any add�t�onal tra�n�ng requ�rements wh�ch should be met by the educat�on systems both at undergraduate and postgraduate level.

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15. Integrated care pathway for children and families with palliative care needs

15.1 developing an Irish integrated care pathway for children & families with palliative care needs

Th�s �ntegrated care pathway outl�nes the key stages �n del�very of care �n hosp�tal and commun�ty sett�ngs to ch�ldren and young people w�th pall�at�ve care needs and �s based on the work of ACT and adapted to reflect the Ir�sh healthcare sett�ng.

Th�s pathway �s d�v�ded �n to 3 stages:• D�agnos�s or recogn�t�on of a l�fe-l�m�t�ng cond�t�on (F�gure 4).• Ongo�ng care that may last weeks, months, years (F�gure 5).•End of the ch�ld’s l�fe, �nclud�ng bereavement care (F�gure 6).

The pathway h�ghl�ghts some of the cruc�al po�nts for fam�l�es around the del�very of care where d�fficult�es ar�se w�th commun�cat�on and a lack of �ntegrated work�ng by profess�onals. In the UK, standards have been developed around each of these po�nts. The development of s�m�lar standards here �n Ireland, would address some of the recurr�ng �ssues for ch�ldren w�th l�fe-l�m�t�ng cond�t�ons and the�r fam�l�es and ensure equal access to h�gh qual�ty care.

The care pathway �s a broad template for serv�ce del�very. Each HSE reg�on would need to adjust the pathway and develop the�r own serv�ce del�very plan tak�ng �nto account ex�st�ng serv�ces, geograph�cal area and ava�lable resources.


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Figure 4. diagnosis or recognition of life-limiting condition

• Pregnancy scan.• Newborn exam�nat�on.• Parental concern.• GP concern.• Cr�t�cal event

(�llness/�njury).

• Deter�orat�on of long-term cond�t�on.

• Consultat�on w�th spec�alt�es, neurology, genet�cs, card�ology etc.

• Invest�gat�ons.

• Paed�atr�c�an.• Nurs�ng staff.• Fam�ly. • Fam�ly support.• Informat�on.• Emot�onal support.

• L�a�son between Tert�ary and Reg�onal Paed�atr�c Un�ts.

• D�scharge may occur to long term resp�te care.

Family/Carers Immediate needs• Informat�on.• Educat�on.• Tra�n�ng.• Support groups.• Emot�onal support for

parents/s�bl�ngs/fr�ends.

Child/young Person Immediate needs• Symptom Control.• Med�cat�on.• Equ�pment. • Informat�on.• Follow-up.

early liaison Meeting• Fam�ly.• Paed�atr�c�an.• Nurs�ng staff.• Paed�atr�c L�nk Nurse.• GP.• PHN.• Soc�al Worker.• Therap�sts.• Ch�ldren’s Outreach Nurse.

Identification of concern

referral to Paediatrician

Clinical assessment

diagnosis or recognition of life-limiting

Condition. Prognosis

breaking bad news

Planning for discharge Home

Family Home

referral to Children’s outreach nurse if appropriate

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Figure 5. living with a life-limiting condition

Multi-agency assessment of Child and Family needs

review of needs & Prognosis

• Paed�atr�c�an.

• GP.

• PHN.

• Paed�atr�c L�nk Nurse.

• Pall�at�ve Care Team.

• Ch�ldren’s Outreach Nurse.

Family/Carers• Informat�on.• F�nanc�al needs.• Emot�onal needs.• S�bl�ng well-be�ng.• Fam�ly funct�on�ng.• Resp�te.• Qual�ty of l�fe.• Interpreter.• Genet�c counsell�ng.• Trans�t�on to adult serv�ces.

Child/young Person• Symptoms/pa�n.• Personal Care Needs.• Therap�es.• Emot�onal support.• Informat�on.• Equ�pment.• Mob�l�ty.• Qual�ty of l�fe.• Resp�te.• School/le�sure.• Trans�t�on plan.• Independent l�v�ng.

environment• Home assessment.• Equ�pment.• Access.• Transport.• School.

Multi- agency Care Plan and Interventions

Family/Carers• Psycholog�cal support.• Tra�n�ng.• Educat�on.• Access to benefits.• Resp�te.• Parent support group.• S�bl�ng group.• Pharmacy suppl�es.

Child/young Person• Symptom management.• Personal Care.• Nurs�ng support.• Psycholog�cal support.• Resp�te.• Soc�al/Le�sure act�v�t�es.• School support.• Independent l�v�ng.

environment• Home adaptat�ons.• A�ds/Equ�pment.• Motab�l�ty.

• D�sab�l�ty Serv�ces.

• Therap�sts.

• Voluntary Agenc�es.

• Schools.

recognition of end of life

acute/planned admissiondischarge

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Figure 6. recognition of end of life

recognition of end of life

assessment of end of life needs and

wishes

end of life plan

death

Post death

organ donation

Family/Carers• Pract�cal support.• S�bl�ng �nvolvement.• Emot�onal support.• Sp�r�tual �ssues.• Cultural/rel�g�ous �ssues.• Funeral plann�ng.• Organ donat�on.• Grandparents.

Child/young Person• Pa�n/Symptom control.• Qual�ty of l�fe. • Fr�ends.• Emot�onal support.• Sp�r�tual �ssues.• Cultural/rel�g�ous �ssues.• Funeral plann�ng.• Organ donat�on.• Emergency treatment.• Spec�al v�s�ts/w�shes.• Memory box.

environment• Place of death.• Amb�ence.• Place after death.

Family / Carers• Fam�ly support.• Pract�cal help.• S�bl�ng care.• Contacts.• Bereavement support.

Child / young Person• Funeral.• Bur�al / Cremat�on.

environment • Place to be w�th the body.• Amb�ence.

bereavement• Assessment.• Support.• Follow up.

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16. Priorities and timeframes

It �s proposed that th�s pol�cy w�ll be �mplemented �n phases. The pol�cy development group have �dent�fied the follow�ng pr�or�t�es and t�meframes �n the first phase of �mplementat�on of the development of ch�ldren’s pall�at�ve care serv�ces �n Ireland:

PHase one

Priority Time frame responsibility1. The appo�ntment of a Consultant Paed�atr�c�an w�th a Spec�al

Interest �n Paed�atr�c Pall�at�ve Care One year from ava�lab�l�ty of fund�ng

HSE

2. In�t�ally the appo�ntment of e�ght Ch�ldren’s Outreach Nurses w�th plans for further appo�ntments �f necessary

Four months from ava�lab�l�ty of fund�ng

HSE

3. Educat�on and tra�n�ng for staff work�ng w�th ch�ldren w�th l�fe-l�m�t�ng cond�t�ons

Ongo�ng HSE

4. Development of a database/reg�ster of ch�ldren w�th l�fe-l�m�t�ng cond�t�ons

End 2010 HSE

5. Sett�ng up a Nat�onal Development Comm�ttee for Ch�ldren’s Pall�at�ve Care

Spr�ng 2010 HSE

17. estimated cost of funding Phase one of implementation

It �s est�mated that �t w�ll cost €2.25m to �mplement Phase 1 of th�s pol�cy over the next five years. Th�s �ncludes:-

The appo�ntment of Ireland’s first Consultant Paediatrician with a special Interest in Paediatric Palliative Care. It �s recommended that there should be one whole t�me equ�valent (WTE) post.

Appo�ntment of 8 Clinical nurse specialists – Children’s outreach nurses for Children with life-limiting conditions. Follow�ng evaluat�on of th�s role and tak�ng �nto cons�derat�on the find�ngs of the Nat�onal Database and CSO figures for populat�on, the number of Outreach Nurses may, �n t�me, need to be adjusted.

The Educat�on programmes �nclude the follow�ng:- Level A and B Paed�atr�c Pall�at�ve Care Educat�on programmes - Bereavement educat�on programmes- Development of Cert�ficate Ch�ldren and Loss programme (20 places per annum) at an ongo�ng cost of

€350,000 approx.

It �s env�saged that the Nat�onal Database would be developed over a per�od of three years at an est�mated cost of €150,000 and w�ll be funded from w�th�n ex�st�ng HSE resources.



46

PHase TwoThe focus of phase 2 of �mplementat�on of the ch�ldren’s pall�at�ve care pol�cy �s on the development of models of care for ch�ldren w�th l�fe-l�m�t�ng cond�t�ons and the�r fam�l�es. Implementat�on of Phase 2 w�ll fall w�th�n the rem�t of the Nat�onal Development Comm�ttee for Ch�ldren’s Pall�at�ve Care, progress w�ll be cont�ngent on the ava�lab�l�ty of fund�ng.

Priority Time frame responsibility1. Development of hosp�tal based pall�at�ve care team. S�x months from

approval and ava�lab�l�ty of fund�ng.

HSE

2. Resp�te•Aud�t of ex�st�ng fac�l�t�es.•Prov�s�on of locally based or ‘at home’ resp�te.

Commence March 2010 dependent on find�ngs of aud�t.

HSE(D�sab�l�t�es/PCT/PCCC)

3. The prov�s�on of ‘hands on` pat�ent care and the development of ‘Hosp�ce at Home’ serv�ces for ch�ldren w�th l�fe-l�m�t�ng cond�t�ons who have pall�at�ve care needs

S�x months from approval and ava�lab�l�ty of fund�ng.

HSE (PCT/PCCC)

development of a hospital-based palliative care teamFollow�ng the appo�ntment of a Consultant Paed�atr�c�an w�th a Spec�al Interest �n Paed�atr�c Pall�at�ve Care, the follow�ng key appo�ntments would be requ�red to develop a hosp�tal-based pall�at�ve care team. In add�t�on to the Cl�n�cal Nurse Spec�al�st �n Pall�at�ve Care currently work�ng �n Our Lady’s Ch�ldren’s Hosp�tal, Cruml�n:

administrative supportPall�at�ve care team adm�n�strat�ve support would be prov�ded by a Grade 4.

Medical social workerOne WTE med�cal soc�al worker w�th a spec�al �nterest �n ch�ldren’s pall�at�ve care.

respite audit and developmentsTh�s pol�cy recommends that a flex�ble range of resp�te care serv�ces be ava�lable to ch�ldren w�th pall�at�ve care needs. Resp�te care should be del�vered w�th�n the home and on an �n-pat�ent bas�s. To fac�l�tate a cost�ng exerc�se for development of th�s model �t �s recommended that the follow�ng �n�t�at�ves take place:

•An aud�t be undertaken of ex�st�ng resp�te fac�l�t�es to define the capac�ty �n the current system to support add�t�onal resp�te fac�l�t�es for ch�ldren w�th l�fe - l�m�t�ng cond�t�ons.

•A sub-group w�th relevant expert�se be establ�shed to exam�ne the aud�t find�ngs and define further what �s requ�red to prov�de add�t�onal resp�te requ�rements �nclud�ng spec�al�st and centre based resp�te.

•Data der�ved from the ICD cod�ng extract be analysed to ass�st �n resp�te need project�ons.

47

recommendations for the future development of children’s palliative care.

Implementation of policy

1. Follow�ng publ�cat�on of th�s pol�cy the HSE should develop an �mplementat�on plan.

2. Ch�ldren w�th �mm�nent pall�at�ve care needs requ�r�ng Hosp�ce at Home w�ll be pr�or�t�sed, espec�ally those near�ng the end of l�fe.

Clinical governance

3. There should be clear ass�gnment and documentat�on of respons�b�l�ty w�th�n and between cl�n�cal teams �nvolved �n the care of the ch�ld w�th a l�fe-l�m�t�ng cond�t�on and the�r fam�ly.

Children and their parents

4.

Fam�ly and carers should have access to:-•The support of qual�fied nurses, care ass�stants and home helps accord�ng to the�r ch�ld’s assessed

needs.•D�rect nurs�ng care, and resp�te (depend�ng on the complex�ty of d�agnos�s and related symptoms).•Twenty-four hour nurs�ng, part�cularly when a ch�ld �s �n the term�nal phase of �llness.

5. Ch�ldren should have access to therapy serv�ces at both hosp�tal and pr�mary care level

6. Parents should be act�vely �nvolved �n the dec�s�on mak�ng and plann�ng of locat�on of care for the�r ch�ld.

Consultant

7. A Consultant Paed�atr�c�an w�th a Spec�al Interest �n Paed�atr�c Pall�at�ve Care should be appo�nted.

8. The consultant should ult�mately be based at the new Nat�onal Paed�atr�c Hosp�tal, Dubl�n.

9. The consultant should have ded�cated rooms �n the new Nat�onal Paed�atr�c Hosp�tal.

10. A Ch�ldren’s Pall�at�ve Care Team should be establ�shed at the Nat�onal Paed�atr�c Hosp�tal.

outreach nurses

11.Reg�onally based Ch�ldren’s Outreach Nurses for ch�ldren w�th l�fe-l�m�t�ng cond�t�ons should be appo�nted to fac�l�tate serv�ce del�very and �ntegrat�on between hosp�tal, commun�ty serv�ces and spec�al�st pall�at�ve care.

12. The Ch�ldren’s Outreach Nurse should l�a�se w�th Pr�mary Care Teams and Network Serv�ces �n order to plan appropr�ate care.

acute and maternity hospitals

13.Hosp�tals should prov�de an appropr�ate env�ronment for ch�ldren w�th pall�at�ve care needs. Th�s �ncludes the phys�cal env�ronment such as fac�l�t�es and ward space, and profess�onal env�ronment such as staff educat�on and tra�n�ng.

14. The Consultant Paed�atr�c�an w�th a Spec�al Interest �n Paed�atr�c Pall�at�ve Care and team should prov�de pall�at�ve care support to matern�ty hosp�tals and neonatolog�sts.

respite

15. Inpat�ent hosp�ce beds spec�fically for resp�te should be developed as part of ch�ldren’s pall�at�ve care serv�ce.

16. A range of resp�te serv�ces should be developed for ch�ldren w�th l�fe-l�m�t�ng cond�t�ons who have pall�at�ve care needs.



48

17. Each HSE adm�n�strat�ve area should plan and develop resp�te fac�l�t�es for ch�ldren w�th l�fe-l�m�t�ng cond�t�ons and the�r fam�l�es.

18. ‘Hosp�ce-at-Home’ teams should be developed by the HSE.

bereavement services

19. Bereavement supports for ch�ldren’s pall�at�ve care should be developed relat�ve to defined levels and encompasses ch�ld, adult and fam�ly support.

20. Fund�ng should be made ava�lable to those fam�l�es �dent�fied by the team as need�ng access to appropr�ate bereavement care.

education

21.Ch�ldren cont�nue to grow and develop phys�cally, emot�onally and cogn�t�vely throughout the�r �llness and regardless of the stage or extent of the�r �llness and the�r locat�on of care, have a need for educat�on and play wh�ch must be met as part of a comprehens�ve pall�at�ve care serv�ce.

22. In an effort to ma�nta�n normal�ty, where poss�ble the ch�ld’s educat�on should cont�nue for as long as poss�ble at the usual locat�on.

Healthcare staff education and research

23. All relevant hosp�tal and commun�ty staff should be fac�l�tated to partake �n educat�on and tra�n�ng on ch�ldren’s pall�at�ve care.

24The supply and demand for staff should be exam�ned together w�th the ex�st�ng and any add�t�onal tra�n�ng requ�rements wh�ch should be met by the educat�on systems both at undergraduate and postgraduate level.

25. All health care profess�onals work�ng �n ch�ldren’s pall�at�ve care should have the opportun�ty to engage �n research.

national Committee for Children’s Palliative Care

26. A Nat�onal Development Comm�ttee for Ch�ldren’s Pall�at�ve Care should be establ�shed by the Health Serv�ce Execut�ve.

27.In order to ensure that pall�at�ve care conforms to best pract�ce, protocols and standards spec�fically �n relat�on to pall�at�ve care for ch�ldren should be developed, agreed nat�onally and be overseen by the Nat�onal Development Comm�ttee on Ch�ldren’s Pall�at�ve Care.

28. Data on ch�ldren l�v�ng w�th and dy�ng from l�fe-l�m�t�ng cond�t�ons should be collected by the HSE.

working with voluntary agencies

29. The HSE and the voluntary agenc�es should cont�nue to develop closer work�ng relat�onsh�ps around car�ng for ch�ldren w�th l�fe-l�m�t�ng cond�t�ons.

30. The voluntary sector wh�le reta�n�ng the�r autonomy should form part of an �ntegrated framework for the HSE adm�n�strat�ve areas.

31. Serv�ce level agreements should form the bas�s of future work�ng relat�onsh�ps between the HSE and all voluntary pall�at�ve care serv�ce prov�ders.

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bIblIograPHy

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Barnardos (2007) Parenting Positively. Coping with Death. For children aged 6 to 12. Barnardos, Dubl�n.

Centre for the Advancement of Health (2004) Report on bereavement and gr�ef research. Death Studies, 28 (6), 489-575 (spec�al �ssue).

Central Stat�st�cs Office (2004) Vital statistics. Personal commun�cat�on.

Central Stat�st�cs Office (2008) Personal commun�cat�on.

Ch�ldren and Young Peoples Spec�al�sed Healthcare Serv�ces (2006) All Wales standards for Palliative care services.Welsh Assembly.

Craft A., K�llen S (2007) Palliative Care Services for Children and Young People in England. Department of Health UK www.dh.gov.uk/publ�cat�ons .

Central Stat�st�cs Office (2007) Data on population by age. www.cso.�e .

Department of Health and Ch�ldren (2008) Building a culture of patient safety. Report of the Comm�ss�on on Pat�ent Safety and Qual�ty Assurance. Dubl�n: Stat�onery Office.

De Vl�eger, M. Gorschs, N Lark�n, P. and Porchet, F.(2004): A curriculum for the development of Palliative Nurse Education in Europe. European Assoc�at�on for Pall�at�ve Care, M�lan, Italy.

Department of Health (2008) Better Care: Better Lives. Improving outcomes and experiences for children, young people and their families living with life-limiting and life threatening conditions. www.dh.gov.uk/publ�cat�ons .

Department of Health and Ch�ldren (2004) Evaluation of the Irish Pilot Programme for the Education of the Health care assistants. Dubl�n: Stat�onery Office.

Department of Health and Ch�ldren (2001) Quality and Fairness: A Health System for you. Dubl�n: Stat�onery Office.

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Department of Health and Ch�ldren (2001). Primary care: A new Direction Dubl�n: Stat�onery Office.

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European Assoc�at�on of Pall�at�ve Care (2004) A Guide for the Development of Palliative Nurse Education in Europe. European Assoc�at�on of Pall�at�ve Care, M�lan.

European Assoc�at�on of Pall�at�ve Care (EAPC) Taskforce on pall�at�ve care for ch�ldren and adolescents (2007) IMPaCCT: Standards for paediatric palliative care in Europe. European Journal of Pall�at�ve Care 1493: 109-114.

FETAC modules. www.fetac.�e Accessed March 2008.

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Nat�onal Conjo�nt Ch�ld Health Comm�ttee (1999) Best Health for Children: Developing a partnership with families. Dubl�n.

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glossary oF TerMs

adolescenceDescr�bes var�ous age ranges from as young as 10 and up to 24 years. The World Health Organ�sat�on (WHO) defines adolescence as 10-19 years.

ChildPerson below the age of 18 years.

Children’s palliative carePall�at�ve care for ch�ldren and young people w�th l�fe-l�m�t�ng cond�t�ons �s an act�ve and total approach to care, embrac�ng phys�cal, emot�onal, soc�al and sp�r�tual elements. It focuses on enhancement of qual�ty of l�fe for the ch�ld and support for the fam�ly and �ncludes the management of d�stress�ng symptoms, prov�s�on of resp�te and care through death and bereavement.

Children’s HospiceA ch�ldren’s hosp�ce �s an organ�sat�on wh�ch prov�des pall�at�ve care for a ch�ld or young person w�th a l�fe-l�m�t�ng cond�t�on and the�r fam�ly and a�ms to meet all needs – phys�cal, emot�onal, soc�al and sp�r�tual – through a range of serv�ces �nclud�ng ch�ldren’s pall�at�ve care, spec�al�st resp�te care, term�nal and emergency care, 24 hour telephone support, pract�cal help, adv�ce and �nformat�on and bereavement support for all fam�ly members.

Hospice at homeTh�s document descr�bes ‘Hosp�ce at Home’wh�ch �s an �ntegral component of ch�ldren’s pall�at�ve care. Hosp�ce at home �s a term commonly used to descr�be a serv�ce wh�ch br�ngs sk�lled, pract�cal ch�ldren’s pall�at�ve care �nto the home env�ronment, espec�ally �n the last weeks and days of l�fe. Hosp�ce at home works �n partnersh�p w�th parents and fam�l�es and prov�des hands on expert nurs�ng care on a 24-hour bas�s, along w�th other elements of pall�at�ve care �nclud�ng:

• Emot�onal, psycholog�cal and soc�al support.• Access to spec�al�st colleagues �n other d�sc�pl�nes, such as phys�otherapy, as requ�red.• Prov�s�on of �nformat�on, support, educat�on and tra�n�ng where needed to all carers both lay and

profess�onal.• Close collaborat�on and commun�cat�on w�th the pr�mary care team, the ch�ld’s acute hosp�tal

spec�al�sts �f appropr�ate and other agenc�es.• Spec�al�st resp�te care.• 24 hour end-of l�fe care.• Bereavement support.

Hospital at homeHosp�tal at home �s a health care model that prov�des hosp�tal-level care �n a pat�ent’s home as a full subst�tute for acute hosp�tal care.

life-limiting conditionsL�fe-l�m�t�ng cond�t�ons are those for wh�ch there �s no reasonable hope of cure from wh�ch ch�ldren or young people w�ll d�e.

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life-threatening conditionsL�fe threaten�ng cond�t�ons are those for wh�ch curat�ve treatment may be feas�ble but can fa�l such as cancer. Ch�ldren �n long term rem�ss�on or follow�ng successful curat�ve treatment are not �ncluded.

Palliative carePall�at�ve care �mproves the qual�ty of l�fe of pat�ents and the�r fam�l�es fac�ng the problems assoc�ated w�th l�fe-threaten�ng �llness, through the prevent�on and rel�ef of suffer�ng by means of early �dent�ficat�on and �mpeccable assessment and treatment of pa�n and other problems, phys�cal, psychosoc�al and sp�r�tual.

respite careThe prov�s�on by appropr�ately tra�ned �nd�v�dual(s) of care for ch�ldren w�th l�fe-l�m�t�ng cond�t�ons for a spec�fied per�od of t�me, thus prov�d�ng temporary rel�ef to the usual care-g�ver.

specialist palliative careSpec�al�st pall�at�ve care serv�ces are those whose core act�v�ty �s l�m�ted to the prov�s�on of pall�at�ve care. These serv�ces are �nvolved �n the care of pat�ents w�th more complex and demand�ng care needs wh�ch requ�re a greater degree of tra�n�ng, staff and other resources. Spec�al�st pall�at�ve care serv�ces because of the nature of the needs they are des�gned to meet are analogous to secondary or tert�ary health care serv�ces.

specialist respite careSpec�al�st resp�te care refers to a sett�ng of care, a programme of care or a serv�ce that prov�des add�t�onal serv�ces. It may take place �n the ch�ld’s home or �n a sett�ng outs�de of the home such as a hosp�tal, long term care fac�l�ty or hosp�ce. Spec�al�st resp�te care prov�des the support requ�red to meet the ch�ld’s hol�st�c care needs and enables ch�ldren and fam�l�es to access short break serv�ces. Spec�al�st resp�te care w�ll often address some aspects of symptom management.

Terminal careRefers to care g�ven at the end of l�fe when the ch�ld �s dy�ng. Term�nal care may take place �n hosp�tal, at home or �n a hosp�ce and �s a cont�nuum of pall�at�ve care.

voluntary body/organisationA not-for-profit serv�ce and/or support organ�sat�on outs�de of the statutory sector. Voluntary organ�sat�ons may operate on a nat�onal or local bas�s and some have part�cular el�g�b�l�ty cr�ter�a (e.g. prov�de serv�ces for ch�ldren w�th�n certa�n age ranges or d�agnost�c categor�es). Some of these non governmental organ�sat�ons are e�ther part�ally or �n some cases fully funded by the state.

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abbrevIaTIons

ACT Assoc�at�on for ch�ldren w�th l�fe-threaten�ng or term�nal cond�t�ons and the�r fam�l�es

GP General Pract�t�oner

ICD Internat�onal Class�ficat�on of D�sease

HIPE Hosp�tal Informat�on Pat�ent Enqu�ry System

HIQA Health Informat�on and Qual�ty Author�ty

HSE Health Serv�ce Execut�ve

PHN Publ�c Health Nurse

WHO World Health Organ�sat�on

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aPPendIx one association for Children with life-Threatening or Terminal Conditions and their Families (aCT)

recommendations:

Every ch�ld and fam�ly should expect to:

1. Rece�ve a flex�ble serv�ce accord�ng to a care plan, wh�ch �s based on �nd�v�dual assessment of the�r needs, w�th rev�ews at appropr�ate �ntervals. Ch�ldren and fam�l�es should be �ncluded �n the process of care plann�ng.

2. Be prov�ded w�th appropr�ate and t�mely �nformat�on.

3. Have the�r own named key worker to co-ord�nate the�r hol�st�c care and prov�de access to appropr�ate profess�onals across the network.

4. Have access to a local paed�atr�c�an �n the�r home area and have access to a local �nterd�sc�pl�nary ch�ldren’s pall�at�ve care team w�th knowledge about the whole range of relevant serv�ces.

5. Be �n the care of an �dent�fied lead consultant paed�atr�c�an expert �n the ch�ld’s cond�t�on.

6. Be supported �n the day-by-day management of the�r ch�ld’s phys�cal and emot�onal symptoms and to have access to 24- hour care �n the term�nal stages.

7. Rece�ve help �n meet�ng the needs of parents and s�bl�ngs, both dur�ng the ch�ld’s �llness and dur�ng death and bereavement.

8. Be offered a range of regular and rel�able resp�te, both �n the home and away from home and over vary�ng per�ods of t�me. Th�s should �nclude nurs�ng care and symptom management.

9. Have ava�lable appropr�ate suppl�es of med�cat�ons, oxygen and spec�al�sed feeds and have all d�sposable �tems such as feed�ng tubes, suct�on catheters and stoma products suppl�ed regularly, effic�ently and preferably through a s�ngle source.

10. Have access to hous�ng adaptat�ons and spec�al�st equ�pment for use at home and school, �n an effic�ent and t�mely manner w�thout recourse to several agenc�es.

11. Be g�ven ass�stance �n order to access benefits, grants and other financ�al help.

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aPPendIx Two International Classification of disease (ICd) Codes used to define life-limiting conditions.

ICd Codes/Categories identified by aCT*

ICD Code Category

140 - 239 Neoplasms

240 – 279 Endocr�ne, Nutr�t�onal and Metabol�c D�seases and Immun�ty D�sorders

280 – 289 D�seases of Blood and Blood-form�ng Organs

320 - 389 D�seases of the Nervous System and Sense Organs

390 – 459 D�seases of the C�rculatory System

488 – 519 D�seases of the Resp�ratory System (exclud�ng acute resp�ratory �nfect�ons 460 – 487)

520 – 579 D�seases of the D�gest�ve System

580 – 629 D�seases of the Gen�tour�nary System

710 – 739 D�seases of the Musculoskeletal System and Connect�ve T�ssue

740 – 759 Congen�tal Abnormal�t�es

760 – 779 Cond�t�ons or�g�nat�ng �n the per�natal per�od

*Assoc�at�on for Ch�ldren w�th L�fe-Threaten�ng or Term�nal Cond�t�ons and the�r Fam�l�es (ACT)

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noTes

- a national policy úram maolaitheach in Éirinn do leanaí a bhfuil...

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