End of life care - children

End of Life Prescribing

Unlike adult practice, end of life care for children is a rare scenario in primary care. Support for prescribing would be provided by professionals working in secondary care, with further advice accessed from the Paediatric Palliative Care and Bereavement Support team (PPCBST) at Bristol Royal Hospital for Children (BRHC) or Charlton Farm Children’s Hospice as required.

For out-of-hours prescribing advice contact the on-call team of the lead specialty (including general paediatrics) for the child’s care via the BRHC switch board. There is currently no commissioned specialist paediatric palliative medical provision out-of-hours.

The Association of Paediatric Palliative Medicine regularly updates a master formulary to guide prescribing practice. Please see their website for the most recent edition of the formulary. https://www.appm.org.uk/formulary/  

Additional symptom management guidance is available from: Basic Symptom Control in Paediatric Palliative Care. The Rainbows Children's Hospice Guidelines

Prescribing guidance.

BNSSG Paediatric Formulary- Chapter 16 palliative care

Care at Home

Lifetime; Sirona care & health, Children’s Hospice South West,  Jessie May and BRCH Palliative Care Team are working together to meet the urgent and essential needs of the families that we care for through this challenging time. Our first priority is to ensure that children remain cared for and supported in the community wherever possible and appropriate.

Provision of end of life care for children is a relatively rare occurrence and a team will be configured to support an individual child when this care is required. Key contributors to this support might include the Lifetime Community Nursing service, Jessie May Trust Children’s Hospice at Home Service, Charlton Farm Children’s Hospice, medical and nursing teams outreaching from Bristol Royal Hospital for Children, Community Paediatricians and often the child’s GP. When the need to deliver such care is identified for an individual child the team will be configured and roles of the different team members assigned.

All children at end of life will have a lead Paediatrician based in the community, hospital or hospice. This medical lead or their on-call team out-of-hours should the first point of contact for primary care professionals.

In some cases it will not be possible to support a child at home at end of life. In this situation an alternative place of care will be arranged. Of note, there is currently no commissioned out-of-hours medical service to support end of life care at home for children and young people less than 18 years old.

Paediatric Palliative Care and Bereavement Support team (PPCBST) at Bristol Royal Hospital for Children (BRHC)

The hospital based Paediatric Palliative Care and Bereavement Support team (PPCBST) at Bristol Royal Hospital for Children (BRHC)/St Michael’s Hospital (StMH) is available Monday to Friday, 9am to 5pm. The team primarily provide inpatient palliative care support but will also work with teams in the community to advise on the palliative care of children living in BNSSG.

The PPCBST are contactable on 0117 3427293 or childrenspalliativecare@uhbw.nhs.uk to discuss referrals or queries with any healthcare professionals, patients or families.

For further details of our service please see: http://www.uhbristol.nhs.uk/patients-and-visitors/your-hospitals/bristol-royal-hospital-for-children/what-we-do/paediatric-palliative-care-and-bereavement-support-team/

Children's Hospice South West

Children’s Hospice South West provide hospice care for children and young people who are expected to die in childhood. There are three hospice bases - situated in Bristol/North Somerset (Wraxall), Devon (Barnstaple), Cornwall (St Austell) . The hospices provide respite breaks and emergency stays including for symptom control and end of life care. They provide help and support for families who face the emotional and physical strain of caring for a child who has a life-limiting condition, including support from their sibling team and they also offer bereavement support for families who have been known to the hospice team during life. The team are available 24/7 365 days a year.

Charlton Farm Hospice in Wraxall is the most local hospice for BNSSG families. It is located in a secluded and beautiful setting, and it enables families to take some time out and enjoy time together as a family. It has eight child-friendly rooms and accommodation for parents and siblings. It has sensory room, a messy play room, a small heated pool and lovely grounds.

Website: https://www.chsw.org.uk/

Phone number – 01275 866611

Eligibility Criteria for referral:

Any child who is likely to die in childhood.

Age range for new referrals – antenatal to 16 years. Referrals for young people between the ages of 16 and 18 will be considered if the young person is expected to have a short prognosis.

Referrals can be made by email (referralscf@chsw.org.uk) or phone (01275866611) or letter – by professionals or family members.

Referrals can be made right from the point of diagnosis of such an illness or condition. Referrals may also be made for children who do not have a clear diagnosis, but whose medical history suggests that their life expectancy is likely to be reduced. Please do not feel that a child must be nearing the end of life before referral, but do recognise that the family must be able to accept that their child's life expectancy will be limited in order to feel comfortable in a hospice environment.

With the families permission we will contact their professional support team (GP, consultants, key workers, etc) to gather up-to-date information about their child's current needs and likely future prognosis. When all the information available is reviewed, a decision will be made about the appropriateness of hospice care for the child and family. The family and the involved professionals will be informed of this decision without delay. A typical period for completion of this referral process is approximately six weeks. There is no charge to families for the care offered.

Jessie May Trust

https://www.jessiemay.org.uk/

Jessie May is a charity that provides hospice at home care for terminally ill children in Bristol, North Somerset & South Gloucestershire.

Jessie May Nurses can provide:

• Respite Care
• Nursing Care
• End of Life Care
• Bereavement Support for up to 5 years following a child’s death
• Practical, emotional and Telephone support
• Social and Support Events

Refer

 Anyone, including parents, involved in the care of a child (or young person) can refer to Jessie May provided that:

• the child (or young person) is not expected to live beyond the age of 19 years
• parental permission for a referral must be sought, together with consent to obtain information about the child (or young person) from a paediatrician.
• the child (or young person) lives within the geographical boundaries of one of the following Clinical Commissioning Group (CCG) areas: Bath and North East Somerset, Bristol, South Gloucestershire, North Somerset

The online referral form can be accessed here: https://jessiemay.org.uk/supporting-you/get-referred/ 

Contact details. Tel: 0117 9616840 or email: info@jessiemay.org.uk

Lifetime service

This service is provided by Sirona and covers Bristol, North Somerset and South Gloucestershire.

Please see the Lifetime Service page for more details

What to do when a child dies

Who undertakes each of these tasks will vary depending on the circumstances. The list is provided here for awareness and oversight. 

• Verification of death – by a registered practitioner (doctor or nurse with specialist training).
• Consideration of whether a Joint Agency Response (JAR) is required - Was the death unexpected and involved any concerning circumstances? If so a ‘Joint agency response’ must be initiated. A ‘Joint agency response’ is a safeguarding investigation and involves the Paediatrician on-call for safeguarding, the police and social services. They would expect to be contacted anytime 24/7 if a death has occurred in concerning circumstances. If there are no concerning circumstances then nothing needs to happen urgently and priority can be given to the family and friends, in keeping with their beliefs and values
• Certification of death – by a medical practitioner, as per adult practice. NB 1 - Consider first if Referral to the Coroner is required. The indications for Coroner discussion are the same as adults.
• NB 2 – A yellow coloured book of death certificates is used for children dying within the first 28 days of life (different to that for older children).
• The child or young person may have been involved with planning for after death and this may be document in an advance care plan (ACP). Formats of ACPs used locally are referred to as Wishes Documents or Child and young persons advance care plan (CYPACP).
• Care of the child after death – transfer to preferred place for on-going care, this could be home, hospice (if child known to the hospice during life), to a religious building such as a mosque or to a funeral directors. It is usual practice to inform the police if the family are taking the body to a location other than a funeral directors. This is simply to avoid any unnecessary concern or incidents arising with emergency services. Funeral directors and healthcare settings such as the hospital mortuary are able to advise on appropriate management of the child after death (such as temperature management) and duration of the body at a location.
• Consideration of whether a hospital post mortem is wished for – this is decided between the family and the treating team. The decision to have a hospital post mortem does not delay the certification and subsequent registration of the death. If a hospital PM is arranged the body will stay in the mortuary rather than being transferred to a funeral directors elsewhere.
• Notify the death – Notification Form (previously known as Form A). This is a statutory requirement. The form can be accessed and submitted via the following link - http://www.ecdop.co.uk/CMAU/Live/Public. If for any reason the Form is not completed within 24 hours, then the Office should be informed by telephone of the child’s death within 24 hours on 0117 342 5141
•  Notification of key professionals/teams who have been involved with the child during life.
•  If the body is to be cremated then the first part of the cremation form will need to be completed. Ordinarily a second part then needs to be completed by a doctor who has not been involved, although this is not currently a requirement during COVID. The doctor completing the second part will need to be able to speak to the doctor who did the first part so please leave a contact phone number.
• Inform parents that they will need to arrange Registration of the death. In light of the covid-19 pandemic this process has changed and deaths are registered via a telephone call to the registry office
• Child death review (CDR) process. This is a statutory process of review for all child deaths in England. It starts with the e-notification form (as above). The child death office then send out (usually a couple of weeks later) an electronic link to an e-Reporting Form (previously known as Form B). This goes to all professionals/teams who have supported the child and family during life. All teams submit their forms and subsequently a Child Death Review Meeting is held. The child’s life and illness is reviewed at the meeting. Families are asked to contribute reflections or questions to the meeting (they do not attend in person). The meeting is designed to constructively review areas of good practice and any areas for improvement. The conclusions from the meeting are then reviewed by the Child Death Overview panel (CDOP). The CDOP has 2 functions, to ensure there were no missed untoward events involved with the death that require further action and secondly to collate the learning from the child’s life and deaths. This learning contributes to national data and publications.

Bereavement support

Bereavement follow-up. The offer made to families will vary between medical specialties and with different community healthcare providers. We would expect all treating to teams to offer some follow-up to the family. The Paediatric Palliative Care and Bereavement Support Team will happily co-ordinate any of this care and also we deliver bereavement support to families. Please contact us on 0117 3427293 or email childrensbereavementsupportteam@uhbw.nhs.uk.

How to support a bereaved family or friend of a child: 

The PPCBST based at BRHC are able to support the family of any child or young people who die at BRHC or lived in the local area for secondary care services. There are also many third sector organisations offering support following the death of a child. Please see our website for further details of our service and signposting to other organisations. http://www.uhbristol.nhs.uk/patients-and-visitors/your-hospitals/bristol-royal-hospital-for-children/what-we-do/paediatric-palliative-care-and-bereavement-support-team/

Efforts are made to ensure the accuracy and agreement of these guidelines, including any content uploaded, referred to or linked to from the system. However, BNSSG ICB cannot guarantee this. This guidance does not override the individual responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or guardian or carer, in accordance with the mental capacity act, and informed by the summary of product characteristics of any drugs they are considering. Practitioners are required to perform their duties in accordance with the law and their regulators and nothing in this guidance should be interpreted in a way that would be inconsistent with compliance with those duties.

Information provided through Remedy is continually updated so please be aware any printed copies may quickly become out of date.