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1355-1841/$ - sedoi:10.1016/j.j

Journal of Neonatal Nursing (2009) 15, 164e168

www.elsevier.com/jneo

Development of a care pathway for babies beingdischarged from a level 3 neonatal intensive careunit to a community setting for end-of-life care

Amanda Williamson a,*, Charlotte Devereux b, Julia Shirtliffe c

a School of Nursing and Midwifery, Faculty of Health, Edith Cavell Building, University of East Anglia,Norwich, NR4 7TJ, UKb Neonatal Intensive Care Unit, Norfolk and Norwich University NHS Foundation Trust, Colney Lane,Norwich, NR4 7UY, UKc Palliative Care Services, East Anglia Children’s Hospice, Quidenham, Norfolk, NR16 2PH, UK

Available online 1 September 2009

KEYWORDSCare pathway;NICU;End-of-life care;Hospice

ng author. Tel.: þ44 16

ess: a.j.williamson@ue

efrontmatterCrownConn.2009.07.004

Abstract The development of a care pathway for babies being discharged froma level 3 neonatal intensive care unit (NICU) to a community setting for end-of-lifecare is discussed. The development of the care pathway was a collaborative projectbetween a level 3 NICU, the local children’s hospice and the local primary caretrust. The development of the care pathway enables parents to decide where theywant their babies to be cared for: NICU, hospice or home care. It enables staff torapidly refer babies and their families to hospice or community care and providesstaff with the support they also need during this difficult time.Crown Copyright ª 2009 Published by Elsevier Ltd on behalf of Neonatal NursesAssociation. All rights reserved.

Our aim was to facilitate a care pathway forbabies and their families that that would establishpalliative care that is as meaningful and as clini-cally and socially acceptable as the provision ofcontinued life extending endeavours (Caitlin andCarter, 2002). The development of a care pathwayfor babies being discharged from a level 3 neonatal

03 597092; fax: þ44 1603

a.ac.uk (A. Williamson).

pyright ª2009PublishedbyElse

intensive care unit (NICU) to a community settingfor end-of-life care is discussed. The developmentof the care pathway has been a collaborativeproject between a level 3 NICU, the local chil-dren’s hospice and the local primary care trust.

Background

The Health Care and Partnership Analysis (HCPA)report that there have been on average 2109neonatal deaths each year from causes likely to

vierLtdonbehalfofNeonatalNursesAssociation.All rights reserved.

Table 1 Examples of memory work.

Visits home including being in baby’s nurseryUse of items chosen for their baby such as Moses

basket, blankets, toysFamily events such as naming ceremoniesPhotos, visual and auditory recordingsMemory boxes including locks of hair, hand and foot

casts/prints, finger tip pictures, activity folderswhich may only be small but will include lots ofphotos prints and captions

Often undertaken as a duplicate activity forseparated parents, siblings and/or grandparents

Core pathway for end-of-life care 165

require palliative care between 2001 and 2005(HCPA, 2007). However, palliative care for babieswith life limiting conditions is an important aspectof neonatal care that is often largely overlooked inthe provision of services. Significantly, thecomprehensive review of Palliative Care Servicesfor Children and Young People in England (Craftand Killen 2007) did not include a review of palli-ative services for neonates within their remit. TheHCPA (2007) review found that 98% of neonataldeaths occurred in a hospital setting. Palliativecare is currently provided for children over 28 daysand for adults but the neonate has generally beencared for within the highly clinical environment ofthe neonatal unit. Anecdotal evidence from localhospice staff indicated that quality of life forfamilies is improved when babies are transferredto hospice or home with hospice support, and morefamily members are able to be involved in the finaldays of the baby’s life (Oliver and Oliver, 2006).

Development

The steering group worked collaboratively with theNICU, the local children’s hospice and the localPCT to develop a care pathway to ensure that carecould be transferred quickly and effectively fromthe NICU to the hospice team. Existing care path-ways for children, devised at Liverpool andCambridge were considered but needed to beredesigned to suit local needs in relation toneonates. The pathway provides a clear guide toensure coordinated planning, management anddocumentation to enable the rapid discharge ofbabies from NICU to hospice or community for end-of-life care. The use of the pathway is commencedas soon as it is clear that a baby is moving towardsimminent end-of-life care or it is recognised thatthe baby has a life threatening condition. Intro-duction of the concept of rapid discharge to thefamily should ideally be undertaken by the babieslead consultant but may also be undertaken by themedical team caring for the baby at the pointwhen end-of-life care is becoming a clear option.

The pathway is designed to be simple to use.Currently it is used only for babies on NICU. Eachsection of the care pathway focuses on issuessurrounding the care needs for the baby at theend-of-life stage. A checklist for rapid discharge isincorporated into the pathway. Most areas areeither short answers or a tick list to enable staff tocomplete the pathway quickly and effectively.Clear guidance is given to nursing staff as to who toinform or what instructions should be if the babydied during transfer. Parent’s wishes and under-standing of their baby’s condition is a major

component of the pathway and family supportworkers from the hospice visit families on NICUonce the care path way is commenced. Thehospice allows parents to build up positivememories of their baby and much of the workfocuses on this (Table 1). Sharing notes means thatthe notes that accompany the baby in relation tothe care pathway are used by the hospice andcommunity staff. It means that all staff involved inthe care are clear what the family and baby’sneeds are.

One area that took much time was ensuring thatthe pathway met the requirements of the acutetrust, hospice and PCT governance groups. Thanksto a fantastic secretary who gave us much help andadvice with formatting and how to match allrequirements, the pathway was approved by allthree in the summer of 2008, one year after theinitial meetings.

Implementation phase

A training package has been implemented toeducate staff in the care that can be provided bythe hospice, how to manage the transfer and howto use the care pathway effectively. The trainingof staff to use the care pathway effectively wasundertaken as a joint study day with both hospiceand NICU staff attending. This collaborativeapproach has led to staff visiting each other’s areaof work to gain greater understanding of thedifferences and common aims of care. Initiallytraining has been given to the senior staff but it ishoped that junior staff will also be able to under-take the training day. The training day enabledstaff from the NICU to see the services that thehospice offers and enables them to feel betterable to talk about the options to parents. Thetraining day also allowed NICU staff to understandthe long-term effects on families of not getting the‘ending’ right and the importance of staff beingable to let go and let the hospice take over. It also

Figure 1 Example of a memory box.

166 A. Williamson et al.

allowed the hospice staff to understand thecomplexities of arranging a discharge from an NICUinto hospice care.

Referral process

The referral processes between the specialistneonatal services and palliative care serviceslocally had been undertaken on a slightly ‘ad hoc’basis and often took a significant amount of timeto organise. Normally a transfer into local hospicecare required review by the hospice governancecommittee. However, the referral process is nowmuch more streamlined without the need for thereview of the committee. The development of thecare pathway means that when a baby is identifiedas requiring end-of-life care or it is recognised thata baby has a life threatening condition there isa clear care pathway available for multidisci-plinary staff to commence. The pathway supportsparents and staff through this difficult time andaids a swift referral process.

Only seven babies had been referred to the localchildren’s hospice from the NICU in the previoustwo years prior to introducing the pathway. Wewanted to ensure that there is a clear and aneffective transition between the NICU and thespecialist palliative care services available locally.The referral process also enables NICU beds to beused for those babies requiring intensive and highdependency care, therefore allowing more appro-priate and efficient use of the resources of cotsand staff.

Staff

Palliative care for babies with life limiting condi-tions is an important aspect of neonatal care thatis largely overlooked in the provision of training formedical and nursing staff. Routinely, neonatalstaff are trained in interventions aimed at pro-longing life and supporting sick babies until theybecome well. A study by Yam et al. (2001) foundthat nurses felt angry, frustrated and resentfulabout the dilemma of providing both curative andpalliative care. Palliative care which offerssupportive end-of-life care requires skill andsensitivity and staff need to be given adequatepreparation to support these babies and theirfamilies. Part of the development process hasbeen to undertake staff training. Neonatal staffbenefit from increased understanding of the rolethat the hospice service can play in providing end-of-life care for babies and parents. Staff are ableto use the care pathway to make effective andappropriate referrals in a timely manner.

Families

Parents need to be able to be involved in planningthe end-of-life care for their babies whether this isin the antenatal or postnatal period.

This pathway ensures that parents are fullyinvolved in the decision processes around theirbaby’s end-of-life care. Craft and Killen (2007,p. 10) report that ‘sometimes being the best very,very, best parent does not mean fighting to curebut fighting to do the best you can for your child’squality of life’. We want to ensure that parents donot have to fight to ensure their baby’s quality oflife. Our aim is to enable them make the rightchoices for their family during a very difficult andpainful process with as much support fromspecialist palliative services as they would like.Although the care pathway may only benefita small number of babies (estimated at 12 peryear) the benefits will be significant in terms ofquality of life in a community environment ratherthan the high technology setting of an NICU.

We aim to improve quality of life for babies andfamilies enabling them to create memories that willsustain them through the bereavement process.The focus of the hospice/community care offersa whole family approach rather than the moreclinically focused treatment approach that occurswithin the neonatal unit. The aftercare provided bythe hospice is also an improvement upon thecurrent system where parents are offered one visitat 6 weeks following the loss of their baby. Parentsand families directly benefit because they have fullaccess to the services provided by the hospice andalso to the provision of aftercare and bereavementservices offered. Parents receive memory boxesfrom the hospice (see Figs. 1 and 2). All families areoffered the support of the bereavement serviceswhich includes attendance at monthly workshops

Figure 2 Further example memory box.

Core pathway for end-of-life care 167

for 6 months following the death of their baby.Workshops at the hospice offer a range of activitiesfor parents and also siblings.

The future

Over the past few years discussion has begun amongprofessionals about offering parents the choice ofa ‘perinatal hospice’ when a diagnosis of a lethal orlife limiting congenital abnormality has been madeantenatally (Breeze et al., 2007; D’Almeida et al.,2006; Calhoun, 2003; Hoeldtke, 2001). We hopethat this care pathway will be able to be utilised forthese parents as well as for those parents for whomdiagnosis is made after the birth of their baby.

A continuing evaluation of the care pathwaytaking account of the views of families and staffthrough interviews and questionnaires will becarried out to enable us to identify any furtheralterations to the pathway or training required inorder to support families.

Case study

A full term baby was transferred to the NICU froma DGH. The baby had been born with minimumrespiratory effort, having passed meconiuma while prior to birth. The baby was fully venti-lated with severe brain damage and it was thoughtthat she would not breathe off the ventilator. Thedecision was taken to commence the care pathwayto enable the parents to have further support andchoices. A member of the hospice team met theparents within hours of them being given the bad

prognosis. After a long chat with the hospice staffabout the options, she left the parents to considerthem overnight. They did not feel they evenwished to see her after she died or want theirother child involved. The parents decided the nextday to go to the hospice. This was arranged and thebaby transferred to the hospice that afternoon.

The hospice nurse and family support practi-tioner who had met the family at the hospital wereat the hospice to meet them. The baby had footpottery prints done while being cuddled by herparents in the lounge at the hospice while stillventilated. The endotracheal tube was thenremoved and pictures taken off the ventilator withno tubes in. She did not die immediately (as hadbeen expected) so the parents took her to theparent’s room and bathed her together. She dieda short while later, the family felt able to take herhome for the night to meet her brother prior togoing to the funeral parlour.

The team work between NICU and the hospiceenabled the parents to be fully supported in copingwith a nightmare situation and helped them havesome precious memories and make choices thatwould not have been possible with outcommencing the care pathway.

The family support practitioner was available atthe family home to help prepare the funeral andoffer support to the family. This support will be on-going for up to 3 years if the family wish and thebaby bereavement support group will also beavailable if they wish to attend.

Conclusion

It has taken us a year to complete the carepathway and undertake the first training day withstaff. At times it has been difficult to ensure thatthe pathway remains clear and focused whilemeeting the needs of all the groups involved. Thenumber of babies being referred for hospice careat the end of life has been increasing. QuidenhamChildren’s Hospice has had 23 referrals over thelast 18 months since starting the pathway work.Staff at both NICU and the hospice feel that wehave underestimated the amount of babies whowould benefit from making this choice. Staffcomment that they like the focused pathway thatgives them clear guidance, helps ease their work-load and helps them to give parents appropriatereferrals to more support services than a level 3unit could offer. The local children’s hospice hasstarted a baby bereavement support group whichmeets once a month for 6 months. The NICUoutreach nurse is involved with the group. Anyfamily bereaved of a baby under 1 year may be

168 A. Williamson et al.

referred. The first group has been well attended by7 families; it has been evaluated well by families.A new group has now started. What we have learntis that to be successful, a care pathway approachis essential. Both the hospice and NICU must signup to the pathway. It means extra work from boththe NICU and the hospice and many things need tobe considered such as symptom control, follow upif the baby lives longer than expected, transport tohospice, death certificates, etc. Debriefings afterdeaths are held jointly with NICU staff. This isa valuable learning opportunity for both teams.

The working links between NICU and the hospicehave improved and we hope will continue to builda close link to enable families to receive the best careand support available during a very difficult time.

Acknowledgements

With thanks to Nicky Sennitt and Lucy Andrews,Cambridge Community Children’s Nursing Team andRoyal Liverpool Children’s NHS Trust Alder Hey forallowing us to view their paediatric care pathways.

References

Breeze, A., Lees, C., Kumar, A., Missfelder-Lobos, H.H.,Murdoch, E., 2007. Palliative care for prenatally diagnosedlethal fetal abnormality. Arch. Dis. Child Fetal Neonatal 92,F56eF58.

Caitlin, A., Carter, B., 2002. Creation of a neonatal end-of-lifepalliative care protocol. J. Perinatol 22, 184e195.

Calhoun, B., Naplitona, P., Terry, M., Bussey, C., Hoeldtke, N.,2003. Perinatal hospice: comprehensive care for the familyof the fetus with a lethal condition. J. Reprod. Med 48,343e348.

Craft, A., Killen, S., 2007. Palliative Care Services for Childrenand Young People in England. Department of Health, UK.

D’Ameida, M., Hume, R., Lathrop, A., Njoku, A., Calhoun, B.,2006. Perinatal hospice: family-centred care of the fetuswith a lethal condition. J. Am. Phys. Surg 11 (2), 52e55.

Health and Care Partnerships Analysis, Cochrane, H.,Liyanage, S., Nantambi, R., 2007. Palliative Care Statisticsfor Children and Young Adults. Department of Health, UK.

Hoeldtke, N., Calhoun, B., 2001. Perinatal hospice. Am. J.Obstet. Gynecol 185 (3), 525e529.

Oliver, A., Oliver, J., 2006. One family’s story. East Anglia’sChildren’s Hospice Newsletter.

Yam, B., Rossiter, J., Cheung, K., 2001. Caring for dying infants:experiences of neonatal intensive care nurses in Hong Kong.J. Clin. Nurs 10, 651e659.

Available online at www.sciencedirect.com