Section 3
As death draws near families need help to plan their wishes and choices
Standard 5
‘Every child and family should be helped to decide on an end of life plan and should be provided with care and support to achieve this as closely as possible.’
ACT 2004
Once it becomes apparent that the child is approaching death the care plan and team supporting the family need to be reviewed.
The child’s quality of life is the main consideration.
It may be helpful to have a review meeting where all professionals and agencies are brought together with the family to discuss their needs and wishes.
There may be increased need for support in the home.
A smaller, more intensively involved team may be needed.
The role of the keyworker is vital for communication within the supporting team and with the family.
It is usually appropriate for the keyworker to work through the future planning
checklist (Appendix 6) and the
‘wishes and choices check list’ (Appendix 7) with the family, providing information on services available.
These discussions are likely to take place over a number of visits as family members are ready to discuss such issues, including options for place of death, funeral arrangements, post mortem, organ donation, sibling support and support for the family in approaching the discussion of death with the child or young person. Some families will be happy to have a copy of their ‘wishes and choices’ checklist in the family held care plan folder. Other families may prefer it to stay with the keyworker who communicates it’s contents to the supporting team.
The child’s consultant will develop a personal resuscitation plan t o assist in communication between professionals including ambulance staff (Appendix 5 : template available by email or on disc from Dr Wolff’s secretary, Children’s
Centre, x37902)
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The Terminal Phase
The family will need 24 hour access to care.
There needs to be clarification about who will be prescribing emergency medication and provision for out of hours pharmacy needs.
Regular symptom reviews need to be undertaken and treatment provided promptly.
The family and team need 24 hour access to a paediatric palliative care specialist, paediatrician or specially trained GP so that pain or other symptoms can be controlled outside normal working hours and unnecessary emergency admissions to hospital can be avoided.
The agreed end of life plan will be documented and a copy held by the family, including the personal resuscitation plan (Appendix 5).
The plan allows for review of care and changing goals to comply with the wishes of the family.
The GP must be kept informed regarding the emergency care/resuscitation plan.
The ‘Special Patient Notes’ system allows NHS Direct call handlers and
Nottingham Emergency Medical Services (NEMS) to know that the child has a personal resuscitation plan and the system can hold contact details for the supporting nursing/ medical team.
This allows a more prompt and appropriate response if emergency services are called ‘out of hours’.
(Appendix 8)
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After death
Families need to have time and privacy with their child and as much choice and control as possible over the care of their child’s body.
The family’s religious and cultural beliefs and rituals will be respected.
Siblings should be given opportunities to express their emotions openly and ask questions.
Contacts will be informed as soon as possible.
The post bereavement checklist ( Appendix 9) allows the supporting professionals to ensure all issues are dealt with and that all families have a high quality, coordinated service.
All paediatric wards and children’s community nursing teams have a bereavement guidelines folder.
Bereavement Support
Those who have been involved with the family throughout are usually best placed to offer support. There should be frequent but sensitive contact to ensure that the family’s needs are being met. It can be helpful if difficult times such as birthdays, Christmas or the anniversary of the child’s death are remembered.
Siblings should be included, not shielded from the grief of the family.
The family may also experience secondary losses. The intense involvement of professionals will cease and many families feel suddenly cut off from what was the major part of their lives.
There may be financial problems as allowances and benefits cease and funeral costs may be high.
The Children’s Bereavement Team at Queen’s Medical Centre (x66276) can support children and families directly or provide emotional support to those professionals who have been and still are supporting the family.
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