Private and Confidential Document

North West Neonatal Palliative Care Plan

for Hospice or Home

January 2016


Instructions for use

·  If you are unfamiliar with this plan please read the instructions within the NWNODN Perinatal Palliative Care Guideline.

·  The purpose of this care plan is to provide a standardised model of care. However it is not a rigid document and professional judgment must be used as appropriate.

·  You must sign for all care that you have provided. Do not sign for care that you have not undertaken yourself. If no signature is present it is assumed that the care has not been provided.

·  This plan is laid out chronologically so please complete the care record for the relevant day.

·  When the care plan ends, please cross out the next page and sign to indicate no further pages are relevant to this episode.

·  Record time in the 24 hour format (ie HH:MM), and the date must be in DD/MM/YYYY format. Use black ink only (legal requirement).

Plan starts:

·  When the Multidisciplinary Team (MDT) has agreed, in partnership with the family, that a baby has a life limiting condition but may live beyond the neonatal period so transfer out of the hospital for the family to spend time together is in the best interest of the baby

Plan ends:

·  When a baby has been transferred from the hospital of birth to home or hospice

·  A copy of this care plan should go with the baby with the original being retained in the hospital notes

If you are unsure how to complete any part of this form, please discuss with:

·  The Neonatal Senior nurse or the Neonatal/Paediatric consultant if the baby is still in Neonatal Services

Or

·  Palliative Care Neonatal nurse at a hospice

North West Neonatal Palliative Care Plan for Hospice or Home January 2016 Page 2 of 14

Section 1: Patient details

Ward/Location: ______

To be completed by named consultant
Date and time care plan initiated / DD / MM / YYYY : __ __ : __ __
Baby’s name / Sex: Male  Female 
Diagnosis
Family’s insight into condition assessed:
Awareness of diagnosis
Parents Yes  No 
Siblings Yes  No 
Other significant family members
Yes  No  / Recognition of need for transfer out of hospital for potential end of life care
Parents Yes  No 
Siblings Yes  No 
Other significant family members
Yes  No 
Free text
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……………………………………………………………………………………………………………………………………………………………………...
Family’s preferred place of care: / Home  / Hospice  / Local Hospital 
If hospice opted for, liaison with hospice and place confirmed
Do this before offering a
hospice place to parents / Yes  No 
Details……………………………………………………………………………………………………………………………………………………………………...……………………………………………………………………………………………………………………………………………………………………...……………………………………………………………………………………………………………………………………………………………………...……………………………………………………………………………………………………………………………………………………………
Family Details:
Mother’s full name / Parental responsibility: Yes  No 
Mothers’ address and contact number
(if different to addressograph)
Mother’s main contact number
Father’s full name / Parental responsibility: Yes  No 
Fathers’ address and contact number
(if different to addressograph)
Father’s main contact number
Details of: other parents / partners / significant other family members / Parental responsibility: Yes  No 
Siblings
Other contact numbers for family
SPECIAL RISK – Mandatory  NO KNOWN RISKS THIS ADMISSION
Please complete the infectious status for the baby at the time of admission
Date swabbed / Sample taken / Positive / Negative / Not known / Theatre notified
If organ donation consented
MRSA / DD / MM / YYYY / Yes  N/A 
ESBL / DD / MM / YYYY / Yes  N/A 
VRE / DD / MM / YYYY / Yes  N/A 
RSV / DD / MM / YYYY / Yes  N/A 
MRO/Other / DD / MM / YYYY / Yes  N/A 
Print Name: ______Designation: ______
Signature: ______Date: DD / MM / YYYY Time: __ __ : __ __

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Section 2: Communication

Ward/Location: ______

Communication sheet – to be completed by neonatal nurse and consultant
Family’s hopes / wishes and spiritual / cultural / religious needs at end of life:
Discussion about what happen when the baby dies:
Parents aware of who to contact if the baby dies at home, if applicable:
Discussion about care of baby after death:
Which family members / friends would the family like to be involved after baby dies:
Sibling support needed:
Memory making options offered: Hand and foot prints or moulds, photographs, keepsakes, lock of hair, bathing, memory box, memory box specifically for siblings
Print Name: ______Designation: ______Ext: ______

North West Neonatal Palliative Care Plan for Hospice or Home January 2016 Page 2 of 14

Section 3: Contact details of professionals

Ward/Location: ______

Signature: Date: DD / MM / YYYY Time: __ __ : __ __

If any of the below are not appropriate to contact in this case then please write N/A

Appropriate Professional / Name / Contact Number
(office & out of hrs) / Date / Time / Sign / Print name / Designation
At start of plan / On discharge
Named Consultant
Obstetric Consultant
Lead Nurse arranging Discharge/Discharge Planning Coordinator
General Practitioner
Community Nurse
Hospice Nurse
Paediatric Palliative Care Consultant
Spiritual Support/ Counsellor
Bereavement
Co-ordinator
Community Midwife
Health Visitor
Social Worker
Interpreting Services
Local Unit
Other
Other

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Section 4: Transition Care Plan

Ward/Location: ______

North West Neonatal Palliative Care Plan for Hospice or Home January 2016 Page 2 of 14

Section 4: Transition care plan

Ward/Location: ______

Transition Care Plan / Date & Time completed / Signature, Print Name, Designation, & Bleep
Objective 1: Family Aware of need for Palliative care and transfer out of hospital
Dr / Diagnosis discussed by Consultant / DD/MM /YYYY
__ __ : __ __ / Signature, Print Name, Designation
Discharge discussed with parents / DD/MM /YYYY
__ __ : __ __ / Signature, Print Name, Designation
Liaison with hospice nurse/hospice referral
Name: / DD/MM /YYYY
__ __ : __ __ / Signature, Print Name, Designation
Liaison with Paediatric Palliative care team
Contact Name: / DD/MM /YYYY
__ __ : __ __ / Signature, Print Name, Designation
Liaison with GP
Contact Name: / DD/MM /YYYY
__ __ : __ __ / Signature, Print Name, Designation
Objective 1 achieved / DD/MM /YYYY
__ __ : __ __ / Signature, Print Name, Designation
Objective 2: Resuscitation discussed and documented - in accordance with local trust policy and documents
Dr / Is decision ‘Not for resuscitation’?
Yes  No  / DD/MM /YYYY
__ __ : __ __ / Signature, Print Name, Designation
Is decision ‘For suction and oxygen only’? Yes  No  / DD/MM /YYYY
__ __ : __ __ / Signature, Print Name, Designation
Is decision ‘For full resuscitation’?
Yes  No  / DD/MM /YYYY
__ __ : __ __ / Signature, Print Name, Designation
Objective 2 achieved / DD/MM /YYYY
__ __ : __ __ / Signature, Print Name, Designation
Objective 3: Discharge planning discussed with hospice and parents
Dr / NWAS End of Life Care alert notification form completed Yes  No  / DD/MM /YYYY
__ __ : __ __ / Signature, Print Name, Designation
Plan of action and support in case of death in transit or immediately after discharge discussed with family Yes  No 
Details of plan
……………………………………………………………………………………………………………………………………………………
……………………………………………………………………………………………………………………………………………………
……………………………………………………………………………………………………………………………………………………
…………………………………………………………………………………………………………………………………………………… / DD/MM /YYYY
__ __ : __ __ / Signature, Print Name, Designation
Potential for post mortem discussed with family Yes  No  / DD/MM /YYYY
__ __ : __ __ / Signature, Print Name, Designation
Organ or tissue donation considered and discussed with family if appropriate Yes  No  / DD/MM /YYYY
__ __ : __ __ / Signature, Print Name, Designation
Parents wish for organ or tissue donation following death Yes  No  / DD/MM /YYYY
__ __ : __ __ / Signature, Print Name, Designation
Objective 3 achieved / DD/MM /YYYY
__ __ : __ __ / Signature, Print Name, Designation

North West Neonatal Palliative Care Plan for Hospice or Home January 2016 Page 2 of 14

Section 4: Transition care plan

Ward/Location: ______

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Transition Care Plan / Date & Time completed / Signature, Print Name, Designation, & Bleep
Objective 4: Transport arrangements for transfer
Dr / Transfer discussed with parents / DD/MM /YYYY
__ __ : __ __ / Signature, Print Name, Designation
Transport option chosen:
 Paramedic Ambulance/Neonatal transport team
 Hospice car
 Hospital taxi
 Family transport
 Rainbow Trust/Arriva
 Other local transport option, specify:
 Other, specify: / DD/MM /YYYY
__ __ : __ __ / Signature, Print Name, Designation
Transport arranged as indicated above / DD/MM /YYYY
__ __ : __ __ / Signature, Print Name, Designation
Suitable transport arranged for family
(if different to baby) / DD/MM /YYYY
__ __ : __ __ / Signature, Print Name, Designation
Objective 4 achieved / DD/MM /YYYY
__ __ : __ __ / Signature, Print Name, Designation
Objective 5: Medical needs for transfer
Dr /  No specific needs for journey
 Oxygen
 Ventilation
 Suction
 Equipment
Details……………………………………………………………………………………………………………………………………………………………………………………………………………………………………………
 Supplies for on-going equipment needs
Details……………………………………………………………………………………………………………………………………………………….. / DD/MM /YYYY
__ __ : __ __ / Signature, Print Name, Designation
Is a portable ventilator required for continuation of ventilation in home or hospice prior to compassionate extubation Yes  No  / DD/MM /YYYY
__ __ : __ __ / Signature, Print Name, Designation
Date ventilator provided / DD/MM /YYYY
__ __ : __ __ / Signature, Print Name, Designation
Nursing staff to accompany baby Yes  No 
Staff name(s):
…………………………………………………………………………………
…………………………………………………………………………………
………………………………………………………………………………… / DD/MM /YYYY
__ __ : __ __ / Signature, Print Name, Designation
Objective 5 achieved / DD/MM /YYYY
__ __ : __ __ / Signature, Print Name, Designation
Objective 6: Medication, nutrition and equipment needs rationalised
Nurse / Non-essential medication and IV nutrition/fluids discontinued / DD/MM /YYYY
__ __ : __ __ / Signature, Print Name, Designation
Route, timing and mode of administration of essential medication appropriate for discharge / DD/MM /YYYY
__ __ : __ __ / Signature, Print Name, Designation
Non-essential tubes / lines removed / DD/MM /YYYY
__ __ : __ __ / Signature, Print Name, Designation
Monitoring discontinued (decision to be made in partnership with parents) / DD/MM /YYYY
__ __ : __ __ / Signature, Print Name, Designation
Objective 6 achieved / DD/MM /YYYY
__ __ : __ __

North West Neonatal Palliative Care Plan for Hospice or Home January 2016 Page 2 of 14

Section 4: Transition care plan

Ward/Location: ______

Transition Care Plan / Date & Time completed / Signature, Print Name, Designation, & Bleep
Objective 7: Medication
Medication need assessed with hospice/community staff / Signature, Print Name, Designation
Nurse / Medication prescribed ready for transfer if required / DD/MM /YYYY
__ __ : __ __ / Signature, Print Name, Designation
Medication dispensed ready for transfer if required / DD/MM /YYYY
__ __ : __ __ / Signature, Print Name, Designation
Parents trained in administering medication if required? / DD/MM /YYYY
__ __ : __ __ / Signature, Print Name, Designation
GP notified of need to continue prescribing medication if transferring home / DD/MM /YYYY
__ __ : __ __ / Signature, Print Name, Designation
Contact Neonatal Pharmacist if there are any special requirements / DD/MM /YYYY
__ __ : __ __ / Signature, Print Name, Designation
Objective 7 achieved / DD/MM /YYYY
__ __ : __ __ / Signature, Print Name, Designation
Objective 8: Religious, cultural and spiritual needs
Nurse / Formal religion identified as:
Formal representative identified as: / DD/MM /YYYY
__ __ : __ __ / Signature, Print Name, Designation
Religious/naming ceremony offered / DD/MM /YYYY
__ __ : __ __
Other spiritual needs discussed / DD/MM /YYYY
__ __ : __ __ / Signature, Print Name, Designation
End of life plans discussed/made
(see section 2, page 5) / DD/MM /YYYY
__ __ : __ __ / Signature, Print Name, Designation
Objective 8 achieved / DD/MM /YYYY
__ __ : __ __ / Signature, Print Name, Designation
Objective 9: Discharge plan communicated
Nurse / Discharge checklist commenced
(see section 6, page 12) / DD/MM /YYYY
__ __ : __ __ / Signature, Print Name, Designation
People to be informed of discharge
(Also refer to local checklists for discharge)
 Named Consultant
 Hospice team
 Neonatal Community Team
 General Practitioner
 Community Midwife
 Health Visitor
 Paediatric palliative care consultant
 Spiritual Supporter if applicable
 Social worker if applicable
 Specialist consultants if applicable
 Community Paediatric consultant if applicable
 NICU counsellor if applicable
 Specialist support worker if applicable
(e.g. Rainbow Trust) / DD/MM /YYYY
__ __ : __ __ / Signature, Print Name, Designation
Objective 9 achieved / DD/MM /YYYY
__ __ : __ __ / Signature, Print Name, Designation

North West Neonatal Palliative Care Plan for Hospice or Home January 2016 Page 2 of 14

Section 4: Transition care plan

Ward/Location: ______

Transition Care Plan / Date & Time completed / Signature, Print Name, Designation, & Bleep
Objective 10: Equipment Requirements
The following equipment required for care of the baby at home arranged and available:
Objective 10a: Oxygen
Nurse / Oxygen required Yes  No 
(if no skip to Objective 10b) / DD/MM /YYYY
__ __ : __ __ / Signature, Print Name, Designation
Oxygen prescribed (HOOF form) / DD/MM /YYYY
__ __ : __ __ / Signature, Print Name, Designation
Nasal cannula / adhesive dressings supplied / DD/MM /YYYY
__ __ : __ __ / Signature, Print Name, Designation
Training provided for parents / DD/MM /YYYY
__ __ : __ __ / Signature, Print Name, Designation
Objective 10a achieved / DD/MM /YYYY
__ __ : __ __ / Signature, Print Name, Designation
Objective 10b: Home Suction
Nurse / Home suction required Yes  No 
(if no skip to Objective 11) / DD/MM /YYYY
__ __ : __ __ / Signature, Print Name, Designation
Provision of suction machine arranged / DD/MM /YYYY
__ __ : __ __ / Signature, Print Name, Designation
Suction equipment supplied / DD/MM /YYYY
__ __ : __ __ / Signature, Print Name, Designation
Training provided for parents / DD/MM /YYYY
__ __ : __ __ / Signature, Print Name, Designation
Objective 10b achieved / DD/MM /YYYY
__ __ : __ __ / Signature, Print Name, Designation
Objective 11: Nutritional Needs
Nurse / Nasogastric or Orogastric tube Yes  No  / DD/MM /YYYY
__ __ : __ __ / Signature, Print Name, Designation
Gastrostomy tube Yes  No  / DD/MM /YYYY
__ __ : __ __ / Signature, Print Name, Designation
Supplies of appropriate naso gastric tube, adhesive dressings, syringes, pH indicator papers given to parents or Hospice if necessary / DD/MM /YYYY
__ __ : __ __ / Signature, Print Name, Designation
Training for parents given as appropriate / DD/MM /YYYY
__ __ : __ __ / Signature, Print Name, Designation
Supply of feeds required Yes  No  / DD/MM /YYYY
__ __ : __ __ / Signature, Print Name, Designation
Supply of feeds provided to take home or to hospice as required / DD/MM /YYYY
__ __ : __ __ / Signature, Print Name, Designation
Prescription for feeds arranged with GP if necessary / DD/MM /YYYY
__ __ : __ __ / Signature, Print Name, Designation
Objective 11 achieved / DD/MM /YYYY
__ __ : __ __ / Signature, Print Name, Designation
Objective 12: Elimination needs
Nurse / Stomas present Yes  No  / DD/MM /YYYY
__ __ : __ __ / Signature, Print Name, Designation
Stoma nurses aware of discharge / DD/MM /YYYY
__ __ : __ __ / Signature, Print Name, Designation
Stoma equipment arranged for home or Hospice / DD/MM /YYYY
__ __ : __ __ / Signature, Print Name, Designation
Objective 12: achieved / DD/MM /YYYY
__ __ : __ __ / Signature, Print Name, Designation

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