EilÍn Ní Mhurchú Liaison Nurse, Jack & Jill Children’s Foundation, Cork. Siobhan Keane Staff Nurse, Kerry Specialist Care Team, Co.Kerry.Terrie Clarke Team Manager, LauraLynn@HOME, LauraLynn, Ireland’s Children’s Hospice, Dublin.Gail Mc Grath Clinical Nurse Co-Ordinator for Children with Life Limiting Conditions, Temple Street Children’s University Hospital.

Working Together:A Collaborative Nursing Approach In Children’s Palliative Care

AIM

To inform and demonstrate the collaborative services available to families of children with palliative care needs in Ireland

Each speaker will describe the service they provide and demonstrate the approach to collaborative working through the use of a case study(We thank the parents who gave permission to use their child’s story and photographs)

•

WHAT WE DO

Jack & Jill Liaison Nurses

Jack & Jill Families

SPECIALIST CHILDREN’SLIAISON NURSE

In home respite for children with severe

neurological conditions 0-5 years

End of life care for children 0-5 years

Darragh’s Story

2016Jan Jul 2014 Jul 2015 Jul 2016

DARRAGH is born

1/4/2013

PHN & GP

1/30/2013

Jack & Jill

2/22/2013

Consultant Neurologist

3/6/2013

J&J respite

4/1/2013

Nursing

4/1/2013

Nursing

7/1/2013

Early Intervention Team

10/1/2013

Nursing

10/30/2013

HSE homecare package

10/30/2013

Nursing

5/1/2014

Nursing

10/1/2014

CNCLLC

10/1/2014

Nursing

12/1/2014

Nursing

3/1/2015

Referred to PCT-homecare

3/30/2015

MDT-GP PHN CNS Disability, J&J liaison nurse, CNM Paeds, CNCLLC, Primary Consultant, CNS PCT, Parents

4/20/2015

Laura Lynn

7/14/2015

Discharge from Homecare Team

9/16/2015

Specialist PCT OLCHC

1/19/2016

Nursing

6/23/2016

Re-referred to palliative homecare team

6/23/2016

DARRAGH died peacefully at home6/26/2016

Feeding difficulties & Irritability

1/25/2013

Seizures

7/3/2013

GORD & Seizures

10/10/2013

NG fed

2/6/2014

Seizures

3/4/2014

PEG

4/25/2014

Seizures & GORD

6/14/2014

Feeding issues & GORD

7/14/2014

Seizures

9/14/2014

Gastritis & Poor sleeping

10/4/2014

ICU Admission

11/14/2014

Seizures

1/14/2015

Chest infection

2/20/2015

Acute admission - life threatening

3/10/2015

Seizures & GORD

6/14/2015

Seizures & Secretions

8/18/2015

Feeding & Seizures & Secretions

10/15/2015

Seizures

11/23/2015

GIT issues, surgery

1/6/2016

GIT issues & Pain

3/14/2016

GIT symptoms -feeding distress

6/8/2016

End of life care

6/22/2016

Holidays in Wales

Ice Skating

Play School

Barretstown J&J family camp

Fota Christmas Experience

Disneyland Paris

Horse Riding

Communion & Confirmation

Late Late Toy Show

Holiday In Portugal

Darragh’s

Adventures

Collaborative working

Services

9Health care professionals

25-30In home nursing support

12

What Darragh’s family said…. We couldn’t have done it without the help and support, we would have spent our time in hospital

and I really believe Darragh wouldn’t have lived as long. We needed all the help but you Eilín you were our sounding board.

(Darragh’s mother)

Darragh did lots of things in his life…

(Darragh’s brothers)

Thank YouNovember 2017

Specialist Palliative

Care Services in

Ireland

Kerry Specialist Palliative Care Team• Day Care Services

• Palliative Care Team in an Acute Hospital

• Medical reviews with a Palliative Care Consultant

• Homecare Teams

• Inpatient Unit due to open before end of year

Éanna

2015 2017Sep Nov 2016 Mar May Jul Sep Nov 2017

Éanna is born9/7/2015

Bereavement Visits11/30/2016

Dermatology & Pal Care OLCHC 9/12/2015

Debra Ireland9/30/2015

CNCLLC9/30/2015

Jack & Jill10/1/2015

Teleconference MDT with parents10/27/2015

Dermatology CNS Homevisit12/1/2015

Discharged Home12/1/2015

Homecare Team12/2/2015

GP & PHN 12/2/2015

Nursing12/4/2015

Early Intervention Team (KIDS)2/17/2016

Nursing3/17/2016

Dermatology and Palliative Care Consultant Visit8/10/2016

1st Birthday9/7/2016

Teleconference MDT10/13/2016

Éanna passed away peacefully at home10/25/2016

Wound Care

9/7/2015

Pain

9/7/2015

Constipation

12/10/2015

Vomitting

12/10/2015

Oral Thrush

12/22/2015

Urinary Symptoms

1/1/2016

Teething

1/6/2016

Nasal Congestion & Chest Secretions

2/19/2016

Apnoea episodes

3/8/2016

Stridor

3/8/2016

Pyrexia

3/8/2016

Poor sleeping & GIT Issues

3/24/2016

Sweating

4/11/2016

Lethargic

5/12/2016

Abdominal Cramps

6/14/2016

Laboured Breathing

6/15/2016

Blistering to Eyes

6/20/2016

Urinary Symptoms

6/24/2016

Photosensitivity

7/26/2016

GIT Bleeding

7/29/2016

Irritability & Agitation due to Itch

8/3/2016

Pulmonary Congestion & Pyrexia

10/25/2016

Challenges• Geographic Location

• Rarity of condition

• Uncertain prognosis

• Adult services providing Paediatric Care

• Education

• Resource implications

• Co-operation with other teams

(O’Leary et al. 2006, O’Brien and Duffy 2010, Quinn and Bailey 2011)

“It can be done”

“He knew nothing but

LOVE”

Parents Thoughts

LauraLynn Ireland’s Children’s Hospice

Terrie Clarke

CNM2 – Team Leader, LauraLynn@HOME

WHAT IS CHILDREN’S HOSPICE CARE?

• Support for the entire family (including parents,

siblings, grandparents and extendedfamily)

• Specialised short breakcare

•Practical help, advice andinformation

•Provision of specialisttherapies (including

physiotherapy, play and musictherapy)

•Provision of information, support,

education and training tocarers

•Bereavementsupport

•24-hour telephonesupport

•24-hour access to emergencycare

•24-hour end-of-lifecare

Children’s hospice services provide interdisciplinary care for children with life-limiting conditions and their families. The aim of these services is to meet the physical, emotional, social, and spiritual needs of the child and family through a variety of services, including but not limited to:

WHO ATTENDSLAURALYNN?

Children of all ages attended LauraLynn’s Hospice Service in2016.

Although predominantly Dublin-based (44%), children and families came from 22 counties to avail of the services of LauraLynn in 2016. The exceptions were Counties Sligo, Kerry, Wexford and Carlow.

Age

Children

accepted in 2016

Children

active in 2016

0-1 years 12 17

2-5 years 11 42

6-10 years 14 52

10+ years 11 42

Total 48 153

Children accepted in 2016

Children active in 2016

Total 48 153

Leinster

Children accepted 34

Children Active115

Munster

Children accepted 9

Children Active 21

Other

Children Active2

Connacht

Children accepted 3

Children Active 8

Ulster

Children accepted 2

Children Active 7

Home HospitalHospice

Holistic Needs Assessment

• Provide information• Comprehensive programmes of

family support (family camps, play sessions, sibling camps)

• Access to our interdisciplinary team 24/7

• Short break stays to focus on symptom management

• Detailed symptom assessment

• Planned sessions of care/ Short Break Stays

• Unplanned sessions of care/ Emergency Stays

• Step-Down Care

• Based on family’s preferred location

• At home• At LauraLynn House• In hospital

• Legacy/Memory-Making• Bereavement Programmes

• structured – Memorial Service, Time-to-Grieve programme

• Unstructured – phone calls, visits to LauraLynn House

Interdisciplinary team Health & Social Care Professionals

Volunteers

Outcome MeasuresFamily Reported

Who Can Refer?

Paediatricians

Voluntary Services

Parents

Schools

TherapistsChildren’s

Ward

GP

Social Worker

Friends & Relatives

Tuiren

2016 2016Day 1 7 13 19 25 31 37

Tuiren is Born 8/29/2016

Attended ED9/8/2016

Attended ED9/21/2016

Attended ED & Admitted9/23/2016

Cerebral US, Echo & CT Brain9/29/2016

MRI Brain & Spine9/30/2016

J&J, St. Francis Homecare & PHN10/2/2016

Laura Lynn10/2/2016

Nursing10/4/2016

LauraLynn & SFH home visit

10/4/2016

Discharged Home10/4/2016

Palliative Care Consultant Homevisit10/7/2016

Tuiren passed away peacefully 10/8/2016

Vomiting

8/29/2016

Reflux

8/29/2016

Infected Naval

9/8/2016

Chesty & Cough

9/21/2016

Laboured Breathing & Feeding Issues

9/24/2016

Intubated & Ventilated

9/29/2016

Hydrocephalus, Dilated Ventricles & Large Right Mass

9/29/2016

Bradycardia, Tachypneoa, CRT 4 secs9/29/2016

Bulging Fontanelle9/29/2016

EVD inserted

9/30/2016

Extubated & EVD removed

10/1/2016

End of life Care

10/4/2016

Secretions & Seizures

10/4/2016

CSCI

10/4/2016

Tuiren

Memory Making

Offered at any time during the child’s life and death

Allows family to continue to engage with their child in a meaningful way

Family events and activities can be planned to promote memory making

Can occur in LauraLynn House, at home, or in the hospital

Clinical Nurse Co-Ordinator for Children with Life Limiting Conditions

Gail Mc Grath

Map of catchment areas

28

Area 9 – Gail McGrath and Alison Cashell, TSCUH

Areas 6 & 7 – Laura Flaherty and Alison Cashell, OLCHC

Area 1& 8 Irene O’Brien – OLOL Drogheda

Area 2 – Colette Goonan, Galway

Area 3 – Hilary Noonan, Limerick

Area 4 –Tyrone Horne, Cork

Area 5 – Liane Murphy, Waterford

Area 8 – Mullingar

Area 1 – Helen McDaid, Letterkenny

Role of the Clinical Nurse Co-Ordinator for Children with Life Limiting Conditions

Supporting children, their families and health care professionals

Promote continuity

of care

Link with Multi

Disciplinary Team

Act as an informed resource

Facilitate education

and training

Data collection

When might a child be referred to the CNC?

Who is this service appropriate for?

Who can refer?

What happens when a referral is made?

An ACT Life Limiting Category, plus at least one of the following:

Unpredictable/ deteriorating health

Support with problematic symptoms

Significant disease progression

31

The aim of the service:

“To add value to existing services so that children with Life Limiting Conditions can be cared for in so far as possible in the home setting”

(Education and Governance Framework for Outreach Nurses for Children with Life Limiting Conditions 2012 )

Logan

2013 2016Jun Oct Feb Jun Oct Feb Jun Oct Feb Jun

Logan is born6/12/2013

Jack and Jill referral3/3/2015

Child Vision7/15/2013

Genetics7/16/2013

Metabolics7/16/2013

Referred to CNCLLC3/17/2015

Jack and Jill 40 hours4/1/2015

Laura Lynn5/27/2015

Jack and Jill 64 hours6/1/2015

HSE 2 nights/wk10/1/2015

HSE 4 nights/wk11/2/2015

Referred to St Francis Hospice12/23/2015

MDT meeting -parental engagement with psychology encouraged6/14/2016

R.I.P.9/18/2016

Early onset epileptic encephalopathy

7/13/2013

Admitted with GI symptoms x 5

11/13/2014

Admitted with increased seizures x 2

3/10/2015

Commenced NG feeding

3/16/2015

Resuscitation Treatment Plan

4/7/2015

Admitted with respiratory infections x 14

4/30/2015

Excessive diaphoresis

6/1/2015

PEG inserted

7/8/2015

Respiratory arrest

11/14/2015

Irritability, reduced urinary output, increased secretions

1/11/2016

Home is thought of as where they want to have their child whilst living rather than wherethey want their child to die (Hannan & Gibson 2005).

Lack of home support was not recorded as a factor affecting parental choice re location ofcare (Horne et al. 2016).

There continues to be a higher proportion of children with an oncology diagnosis that dieat home (Horne et al. 2017).

Parallel planning for life whilst also planning for deterioration or death allows a child’s fullpotential to be achieved, and primes the mobilisation of services and professionals wherenecessary” (Together for Short Lives 2013a, p.5).

Palliative care should be facilitated wherever the family prefer (Mancini 2012).

Location of Care

“As professionals the difference that we can make is not in the outcome but in the process of how the child and family live, often for many years,

how the child dies, and how the family continue to live”

(Pfund 2007)

Conclusion

Thank you

• Hannan J. & Gibson F. (2005) Advanced cancer in children: how parents decide on final place of care for their dying child. International Journal of Palliative Nursing 11 (6), 284-291.

• Horne T., O’Brien I., Murphy L., Goonan C., Murphy D., Mc Grath G., Flaherty L. & Noonan H. (2016) Location of Death for Children with Life Limiting Conditions; National Data Collection Results - 2015. Exhibited at Ireland’s 2nd International Children’s Palliative Care Conference on 22 & 23 April 2016.

• Mancini A. (2012) The place for palliative care in neonatal care. Journal of Neonatal Nursing 18, 86-87.

• O’Brien, I. & Duffy, A. (2010) The developing role of children’s nurses in community palliative care. British Journal of Nursing 19 (15), 977-981.

• O’Leary N., Flynn J., Mac Callion A., Walsh E. & Mc Quillan R. (2006) Paediatric palliative care delivered by an adult palliative care service. Palliative Medicine 20, 433-437.

• Pfund R. (2007) Palliative Care Nursing of Children and Young People. Radcliffe Publishing, Oxford.

• Quinn, C. & Bailey, M. (2011) Caring for children and families in the community: experiences of Irish palliative care clinical nurse specialists. International Journal of Palliative Nursing 17(11), 561-567.

• Together for Short Lives (2013a) Standards Framework for Children’s Palliative Care. Retrieved from http://www.togetherforshortlives.org.uk on 26 September 2017.

References