Neonatal Palliative Care Pathway / Complex Health and Palliative Care / 02/03/2012
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North East Lincolnshire
Children & Young Peoples
End of Life Collaborative
Neonatal Palliative Care Pathway
For babies and their families with an antenatal diagnosis,
on the Neonatal Intensive Care Unit,
or being discharged home or to a hospice.
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Acknowledgements
We gratefully thank the following for their permission to use and share their work in the
development of this pathway.
NICU CARE PATHWAY by Norfolk and Norwich University Hospitals NHS Foundation
Trust, Norfolk Community Heath Care and East Anglia’s Children’s Hospice, Written by
Julia Shirtliffe, Charlotte Devereux, Amy Brown, Amanda Williamson.
ACT Neonatal Pathway
Neonatal Palliative Care Pathway by Chelsea and Westminster Hospital, Written by
Alexandra Mancini
The Rainbows Children’s Hospice for use of their neonatal guideline, within
Basic Symptom Control in Paediatric Palliative Care, Dr Satbir Singh Jassal,
Medical Director of Rainbows Children’s Hospice and General Practitioner, Dr
Johnathon Cusak, Consultant Neonatologist, University Hospital, Leicester and Lucy
Hawkes, Neonatal Pharmacist, University Hospital Leicester.
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Contents:
5 Sentinels for Palliative Care
Commencing Pathway
Care on NICU
MDT Planning Meeting for the family
Goals for care
End of Life Care Plan
Discharge Planning
Transition Care Plans
Assessment at Discharge
Transfer Outcome Summary
Discharge home / hospice
Transition to home care from Hospice
Review after the death of a baby
Appendix 1: Contact Numbers
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Sentinels for Palliative Care
BREAKING BAD NEWS
PLAN PALLIATIVE CARE
HOSPITAL / HOME / HOSPICE
MDT ASSESSMENT OF FAMILIES
NEEDS
Choice
Medical needs
Family support
Practical support
MDT CARE PLAN
child and family central to plan
named person
clear documentation
symptoms & goals for care
END OF LIFE CARE PLAN
CHOICE-for the family
QUALITY-for the family
CONTINUING
BEREAVEMENT CARE
Source: Act-‘A Guide to the development of Children’s palliative care services’ 2009
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Neonatal Care Pathway Initiation
Please note: this pathway should be commenced when the neonatal medical and nursing team, in
collaboration with the family and members of the Multi-Disciplinary Team (MDT) have agreed in
partnership that the baby is requiring palliative care.
Date Care Pathway Initiated
Baby’s Name:
Date of Birth:
Hospital Number:
NHS Number:
Parents / Legal Guardian’s name:
Contact Telephone Number:
Mobile Contact Number:
Family’s Home Address:
Family’s Telephone Number:
Diagnosis and summary of discussions – Antenatal discussions may also be entered here
Lead Consultant:
Key Worker:
Named Nurse:
Name of Hospice
Hospice Contact:
Community Nursing Team:
Social Worker:
Preferred place of care:
Hospital
Home
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Hospice
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Review
date
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Planning Meeting
Venue
Time and Date
Agreed planned date of discharge
All professionals utilising the care pathway must sign below:
Professionals
Name and Details
Date of
Involvement
NICU Lead
Consultant
Neonatal Community
Nurse
Neonatal
Manager
Named
Midwife
Named
Obstetrician
St Andrews Hospice
Medical Director
St Andrews Hospice
Named Nurse
General
Practitioner
Health
Visitor
Social
Worker
Physiotherapy
Dietician
Other
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Signature
Contact Number
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Goals for Care
Patient Focus
1
Pain
Goal:
Patient is pain free
 Neonatal assessment of pain
 Pain free on movement
 Present analgesia
2
Feeding
Goal
Baby tolerating milk
 TPN – Line Care
 Absorption
3
Vomiting
Goal
Patient is not vomiting
 Anti-reflux medication
 Baby comfortable
4
Elimination
Goal
No abdominal distension
 Normal bowel motion in last 3 days and
passing urine
5
Agitation/restless/distress
Goal
No sign of agitation
 Parents/nurse report that baby is settled,
restful and sleeping for normal periods
6
Mouth Care
Goal
Mouth and lips appear moist
 Regular mouth care
7
Respiratory tract secretions
Goal
No audible secretions in baby
 No excessive dribbling or cough
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Goals for Care continued
8
Medication
Goal
Being administered by a safe and
appropriate route
 Absorption
 Symptom Control
9
Mobility and pressure area care
Goal
Baby cared for in a safe
environment
 Baby comfortable and has appropriate
pressure relieving aids
 Regular positioning
10
Care of the Family/Privacy and
Dignity
Goal
Up to date information
 Psychological support
 Practical support
 Spiritual support
 Bereavement support
 Health needs
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End of Life Care Plan
Name:
Address:
Date of Birth:
Family’s request for preferred place of death discussed and chosen (Hospital/Hospice/Home)
Family’s hopes and wishes at end of life (siblings/music/cuddles/photographs)
Discussion about what physical change will occur at time of death
Parents aware of who to contact if baby dies at home during the 24 hour period
Name:
Contact Number:
Discussion about care of baby after death. This should include discussion around potential
organ donation such as heart valves. In addition where will the baby go and what needs to be
done
Family/Friends to be involved after the baby dies (grandparents/siblings)
Hand/foot prints, photographs, keepsakes, lock of hair taken? Camera available?
Memory boxes for family/siblings?
Name and Signature:
Designation:
Date:
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Transition Care Plan-Goals
Goal 1: Discharge planning discussed with Hospice and parents
Please tick boxes when interventions and goals are achieved – if not achieved please document in
variance box.
Date:
Goal achieved
Initials:
Liaison with Hospice Medical Director/Senior Nurse
Date:
Time:
Person contacted:
Initials:
Person contacted:
Initials:
Consultant liaison with GP:
Date:
Time:
Discussed with parents:
Date:
Time:
Initials
Any variance:
Goal 2: Resuscitation discussed and documented
Goal achieved
Date:
Initials:
Not for resuscitation
Date:
Initials:
For suction and oxygen only
Date:
Initials:
Letters for paramedics written
Date:
Initials:
Any variance:
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Goal 3: Family aware of possible complications of illness and potential mode of death
Date:
Initials:
Goal achieved
Discussion with consultant and hospice staff
Date:
Initials:
Family have access to telephone
and transport in an emergency:
Date:
Initials
Plan of action and support in case of death in
transit or immediately after discharge
discussed with family (Appendix 1
Date:
Initials:
Name and Contact Details of hospital doctor to
complete death certificate if death occurs in
transit
Date:
Initials:
Post mortem examination requested?
Plan for organising post mortem agreed
with family
Yes
No
Yes
No
Any variance:
Goal 4: Medication, nutrition and equipment needs
Date:
Initials:
Non essential medication discontinued
Date:
Initials:
Route, timing and mode of administration of
essential medication appropriate for transfer
Date:
Initials:
Non essential tubes/lines removed
Date:
Initials:
Monitoring Discontinued
Date:
Initials:
Goal achieved
Any variance:
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Goal 5: Medical needs for transfer to hospice or home
Date:
Initials:
No specific needs for journey
Date:
Initials:
Oxygen required for journey
Date:
Initials:
Ventilation required for journey
and arranged
Date:
Initials:
Suction required for journey
Date:
Initials:
Goal achieved
Medical or nursing staff to accompany baby on journey
Yes
No
Any variance:
Goal 6: Suitable transport for baby’s transfer
Goal achieved
EMBRACE
Date:
Initials:
Date:
Initials:
Hospice Transport
Family Transport
Other (please specify)
Suitable transport arranged for family (if different to baby)
Any variance:
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Goal 7: Medical needs for HOSPICE or HOME
Date:
Goal achieved
Medication/ TTO’s prescribed and ready for transfer?
Initials:
Yes
No
Any variance:
Goal 8: Religious, cultural, spiritual, communication support needs discussed
Goal achieved
Date:
Initials:
Family’s insight into the condition assessed:
Awareness of diagnosis:
Parents:
Yes
No
Initials:
Siblings:
Yes
No
Initials:
Parents:
Yes
No
Initials:
Siblings:
Yes
No
Initials:
Recognition of end of life:
Formal Religion identified as……………………………………………………………………
Special religious needs now and
end of life discussed
Yes
Any variance:
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No
Initials:
Neonatal Palliative Care Pathway / Complex Health and Palliative Care / 02/03/2012
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Goal 9: Discharge Plan communicated
Discharge Check list
completed
Yes
No
Date
Initials
The following people informed of discharge:
NICU Lead Consultant
Yes
No
Neonatal Community Team
Yes
No
General Practitioner
Yes
No
Spiritual Support
Yes
No
Hospice
Yes
No
Social Worker
Yes
No
Health Visitor
Yes
No
Head of Children’s Complex Health Care
Yes
No
Dietician
Yes
No
Midwife
Yes
No
Coroner’s Office
Yes
No
Any variance:
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Goal 10: Equipment
Goal achieved
Yes
No
Date:
Initials:
Equipment required for care at
Home or Hospice available?
Yes
No
Date
Initials
Oxygen required
Yes
No
Oxygen Prescribed
Yes
No
Date
Initials
Nasal Cannula/adhesive
dressings
Yes
No
Date:
Initials:
Oxygen checklist completed
Yes
No
Date:
Initials:
Training for parents
Yes
No
Date:
Initials:
Training for carers commenced
as required
Yes
No
Date:
Initials:
Home suction
Yes
No
Suction machine arranged
Yes
No
Date:
Initials:
Suction equipment
Yes
No
Date:
Initials:
Training for parents
Yes
No
Date:
Initials:
Training for carers commenced
as required
Yes
No
Date:
Initials:
Home tracheostomy care
Yes
No
Equipment for Tracheostomy
care arranged?
Yes
No
Date:
Initials:
Discussion with family about
Tracheostomy care?
Yes
No
Date:
Initials:
Parents able to perform
emergency tube change?
Yes
No
Date:
Initials:
Ongoing equipment supplies
arranged?
Yes
No
Date:
Initials:
Training for carers commenced
as required
Yes
No
Date:
Initials:
Any variance:
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Goal 11: Nutritional needs
Goal achieved
Date:
Initials:
Naso gastric tube
Yes
No
Gastrostomy tube
Yes
No
Supplies of appropriate naso
gastric tubes, adhesive
dressings, syringes, pH indicator
papers given to parents
Yes
No
Date:
Initials:
Training for parents given
Yes
No
Date:
Initials:
Supply of Feeds Required
Yes
No
Dietician Informed
Yes
No
Date:
Initials:
Supply of feeds to take home
or to hospice
Yes
No
Date:
Initials:
Prescription for feeds
arranged with GP
Yes
No
Date:
Initials:
Date:
Initials:
Training for carers commenced
if required
Any Variance:
Goal 12: Elimination Needs
Goal achieved
Stoma Care required
Yes
No
Stoma Nurses aware of
discharge
Yes
No
Date:
Initials:
Stoma equipment arranged for
Home or hospice
Yes
No
Date:
Initials:
Any variance:
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Assessment at Discharge
Diagnosis
Please briefly summarise current care of any
symptoms below or say if not a current problem
Symptoms:
Tolerating feeds
Vomiting
Constipated
Pain
Agitated / restless / distressed
Seizures
Spasms
Conscious
Urinary difficulties
Respiratory problems, secretions/
dyspnoea
Skin condition
Any known infections
Current comfort/ Management measures
- Analgesics
- Anti-emetics
- Sedatives
- Anti-cholinergic
- Anti-convulsants
Any equipment?
Do the family have any social care support
needs?
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Transfer Outcome Summary
To be completed either by transport team or by receiving community or hospice team.
Baby died in transit
Yes
If yes, time of death ………….……………….
No
Place of Death …………………………………….
Death verified by (print name and sign) ……………………………………………………
Designation …………………………………………………………………………………….
Death certified by (print name and sign) ……………………………………………………
Designation …………………………………………………………………………………….
Time of arrival at transfer destination …………………………………………………….…
Transfer documentation received
Yes
Any significant events during transfer
Is there anything that may have been useful for the baby’s transfer?
Completed by (print name and sign) ……………………………………………………….
Time and Date ………………………………………………………………………………...
Contact Details ………………………………………………………………………….……..
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Transition to Home Care from Hospice
If baby’s life is prolonged, Hospice will initiate Transition to Home Care Plan, and will
communicate with all professionals on contact details sheet.
1.
Hospice Team to complete home assessment
Date:
Initials:
2. Review Goal 10 – Equipment (complete checklist)
Date:
Initials:
Any other goals for care:
Name and Signature:
Designation:
Date:
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Review after the death of a baby
Baby’s Name:
Gender:
Date of Birth:
Date & time of Death:
Address:
Telephone:
Mobile:
General Practitioner:
Diagnosis:
Family details:
Parent’s together:
Yes
Mother’s Full Name:
Address and contact number if different to baby :
Father’s Full Name:
Address and contact number if different to baby :
Details of – Other parents / partners / significant other family members:
Siblings:
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Review after the death of a baby continued
Care of the Family
Yes
No
N/A
Parents present at time of death?
Did they spend time with their baby according to their wishes?
Siblings / other family members present or visited?
Did a professional visit as requested?
Have religious / cultural beliefs been considered according to family’s wishes?
Keepsakes
Yes
No
Were photos offered and taken if requested?
Hand/foot prints and cast taken / lock of hair?
Precious Memories given
Information / Practicalities
Yes
No
N/A
Print name and sign
Coroner’s office informed?
Bereavement information given to
parents?
Arrangements made to register death?
Medical certificate for cause of death
completed?
Funeral Directors informed?
Records completed?
Siblings admitted to service for support if
required?
Social & Continuing care informed if
involved?
Carers if any informed?
Bereavement visits arranged?
Child Death Review Panel informed of
death?
Debrief of staff arranged
Yes
No
N/A
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Date
Print name and sign
Neonatal Palliative Care Pathway / Complex Health and Palliative Care / 02/03/2012
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Appendix 1
Rainbow guidelines pages 55- 59
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Appendix 1: Contact Numbers
Grimsby Neonatal Unit
01472 875254
Children’s Neonatal Outreach Team
01472 874111
(Extension 7559)
St Andrew’s Children’s Hospice
www.standrewschildrenshospice.org.uk
01472 350908
(Extension 245)
Children’s Disability Service, Grimsby
01472 325607
Health Visiting Team, Grimsby
01472 255244
ACT – The Association for Children’s Palliative Care
www.act.org.uk/
0845 108 2201
Children’s Hospice UK
www.childhospice.org.uk/
0117 989 7820
SANDS – Stillbirth and neonatal death charity
www.uk-sands.org/
020 74365881
Child Bereavement Charity
www.childbereavement.org.uk/for_young_people
01494 446648
ARC – Antenatal results & choices
http://www.arc-uk.org/
020 76310285
BLISS
www.bliss.org.uk/
020 7378 1122
RCPCH – Royal College of Paediatrics and Child Health
www.rcpch.ac.uk/
BAPM – British Association of Perinatal Medicine
www.bapm.org/
Space for parents to add any telephone contacts:
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020 70926085