A Collaborative Nursing Approach In Childrens Palliative Care Eiln N - - PowerPoint PPT Presentation
Working Together: A Collaborative Nursing Approach In Childrens Palliative Care Eiln N Mhurch Liaison Nurse, Jack & Jill Childrens Foundation, Cork. Siobhan Keane Staff Nurse, Kerry Specialist Care Team, Co.Kerry. Terrie Clarke
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)
Jack & Jill Liaison Nurses Jack & Jill Families
SPECIALIST CHILDREN’S LIAISON NURSE
In home respite for children with severe neurological conditions 0-5 years End of life care for children 0-5 years
2016
Jan 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
DARRAG H died peacefull y at home
6/26/2016
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
9
Health care professionals
25-30
In 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)
November 2017
Hospital
Care Consultant
end of year
2015 2017
Sep Nov 2016 Mar May Jul Sep Nov 2017
Éanna is born
9/7/2015
Bereavement Visits
11/30/2016
Dermatology & Pal Care OLCHC
9/12/2015
Debra Ireland
9/30/2015
CNCLLC
9/30/2015
Jack & Jill
10/1/2015
Teleconference MDT with parents
10/27/2015
Dermatology CNS Homevisit
12/1/2015
Discharged Home
12/1/2015
Homecare Team
12/2/2015
GP & PHN
12/2/2015
Nursing
12/4/2015
Early Intervention Team (KIDS)
2/17/2016
Nursing
3/17/2016
Dermatology and Palliative Care Consultant Visit
8/10/2016
1st Birthday
9/7/2016
Teleconference MDT
10/13/2016
Éanna passed away peacefully at home
10/25/2016
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
(O’Leary et al. 2006, O’Brien and Duffy 2010, Quinn and Bailey 2011)
Terrie Clarke CNM2 – Team Leader, LauraLynn@HOME
siblings, grandparents and extendedfamily)
physiotherapy, play and musictherapy)
education and training tocarers
Children’s hospice services provide interdisciplinary care for children with life-limiting conditions and their
physical, emotional, social, and spiritual needs of the child and family through a variety of services, including but not limited to:
Children of all ages attended LauraLynn’s Hospice Service in 2016. 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 0-1years 12 17 2-5years 11 42 6-10years 14 52 10+ years 11 42 Total 48 153 Children accepted in 2016 Children active in 2016 Total 48 153
Leinster
Children accepted34
Children Active 115Munster
Children accepted9
Children Active21 Other
Children Active 2Connacht
Children accepted3
Children Active8 Ulster
Children accepted2
Children Active7
Home Hospital Hospice
Holistic Needs Assessment
family support (family camps, play sessions, sibling camps)
team 24/7
symptom management
Short Break Stays
Emergency Stays
location
Service, Time-to-Grieve programme
visits to LauraLynn House
Interdisciplinary team Health & Social Care Professionals Volunteers
Outcome Measures Family Reported
Paediatricians
Voluntary Services Parents Schools Therapists Children’s Ward GP Social Worker Friends & Relatives
2016 2016
Day 1 7 13 19 25 31 37
Tuiren is Born
8/29/2016
Attended ED
9/8/2016
Attended ED
9/21/2016
Attended ED & Admitted
9/23/2016
Cerebral US, Echo & CT Brain
9/29/2016
MRI Brain & Spine
9/30/2016
J&J, St. Francis Homecare & PHN
10/2/2016
Laura Lynn
10/2/2016
Nursing
10/4/2016
LauraLynn & SFH home visit
10/4/2016
Discharged Home
10/4/2016
Palliative Care Consultant Homevisit
10/7/2016
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 secs
9/29/2016
Bulging Fontanelle
9/29/2016
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
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
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 le of f th the Cli linical Nurse Co-Ordinator for Children wit ith Lif ife Lim imiting Conditions
Su Supporting ch chil ildren, , their famil ilies s an and hea health car are pr professio ionals
Promote continuity
Link with Multi Disciplinary Team Act as an informed resource Facilitate education and training Data collection
When mig ight a child ild be referred to the CNC?
Who is s th this is ser servic ice ap appropriate for
Who can refer? What ha happens whe hen a a referr rral l is s made?
An ACT Life Limiting Category, plus at least one of the following:
Unpredictable/ deteriorating health Support with problematic symptoms Significant disease progression
31
Th The aim im of f th the se servi vice:
“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 )
2013 2016
Jun Oct Feb Jun Oct Feb Jun Oct Feb Jun
Logan is born
6/12/2013
Jack and Jill referral
3/3/2015
Child Vision
7/15/2013
Genetics
7/16/2013
Metabolics
7/16/2013
Referred to CNCLLC
3/17/2015
Jack and Jill 40 hours
4/1/2015
Laura Lynn
5/27/2015
Jack and Jill 64 hours
6/1/2015
HSE 2 nights/wk
10/1/2015
HSE 4 nights/wk
11/2/2015
Referred to St Francis Hospice
12/23/2015
MDT meeting -parental engagement with psychology encouraged
6/14/2016
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 where they want their child to die (Hannan & Gibson 2005). Lack of home support was not recorded as a factor affecting parental choice re location of care (Horne et al. 2016). There continues to be a higher proportion of children with an oncology diagnosis that die at home (Horne et al. 2017). Parallel planning for life whilst also planning for deterioration or death allows a child’s full potential to be achieved, and primes the mobilisation of services and professionals where necessary” (Together for Short Lives 2013a, p.5). Palliative care should be facilitated wherever the family prefer (Mancini 2012).
Lo Locatio ion of f Ca 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) Conclu lusio ion
for their dying child. International Journal of Palliative Nursing 11 (6), 284-291.
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.
British Journal of Nursing 19 (15), 977-981.
by an adult palliative care service. Palliative Medicine 20, 433-437.
palliative care clinical nurse specialists. International Journal of Palliative Nursing 17(11), 561-567.
http://www.togetherforshortlives.org.uk on 26 September 2017.
References