Neonatal Death - Death short guidance...NBCP for use in England from 4FQUFNCFS NBCP Neonatal Death...

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Transcript of Neonatal Death - Death short guidance...NBCP for use in England from 4FQUFNCFS NBCP Neonatal Death...

  • Neonatal Death Bereavement Care Pathway

    A pathway to improve bereavement care for parents in England after pregnancy or baby loss

    NBCP for use in England from September 2019

    Our National Bereavement Care Pathway core partners

    Antenatal Results & Choices

  • 2 I NBCP Neonatal Death Bereavement Care Pathway NBCP for use in England from September 2019

    About the NBCP The National Bereavement Care Pathway has been developed to improve bereavement care and reduce variability in provision for families after miscarriage, ectopic pregnancy, molar pregnancy, termination for fetal anomaly, stillbirth, neonatal death or sudden and unexpected death in infancy up to 12 months.

    This document has been prepared to assist all healthcare professionals and staff who are involved in the care of parents of a baby who has died neonatally. Other documents are available that describe the pathway for the other childbearing losses (see

    ‘Healthcare professionals’ and ‘staff’ mean any practitioner who has contact with a bereaved parent. ‘Parent’ refers to an expectant or bereaved mother, father or partner, and ‘baby’ is used throughout. Not everyone will want these words to be used, though, and healthcare professionals should use the words preferred by the individual. We refer to ‘Trusts’, but we hope that the pathway will also be used by independent healthcare establishments and other bodies that organise and provide care for women and families experiencing a childbearing loss.

    The Core Group gratefully acknowledges the support and contribution of the Department of Health and Social Care (DHSC) and Teddy's Wish to the development of the NBCP.

    More detail on the terminology is given at

    “Parents don’t need protecting; they need the chance to be parents, provide their child dignity and create memories.” (Quote by bereaved parent, 2017)

  • NBCP Neonatal Death Bereavement Care Pathway I 3NBCP for use in England from September 2019


    Bereavement care standards

    A parent-led bereavement care plan is in place for all families, providing continuity between settings and into any subsequent pregnancies.

    Bereavement care training is provided to all staff who come into contact with bereaved parents, and staff are supported by their Trust to access this training.

    All bereaved parents are informed about and, if requested, referred for emotional support and for specialist mental health support when needed.

    There is a bereavement lead in every healthcare setting where a pregnancy or baby loss may occur.

    Bereavement rooms are available and accessible in all hospitals.

    The preferences of all bereaved families are sought and all bereaved parents are offered informed choices about decisions relating to their care and the care of their babies.

    All bereaved parents are offered opportunities to make memories.

    A system is in place to clearly signal to all healthcare professionals and staff that a parent has experienced a bereavement to enable continuity of care.

    Healthcare staff are provided with, and can access, support and resources to deliver high-quality bereavement care.

    A Trust that meets these standards is considered to be providing good bereavement care. Trusts should audit provision against these standards and improve the bereavement care they offer where gaps are identified. Implementation of these standards via the pathway will help the Trust to meet the elements of the Care Quality Commission’s Maternity Assessment Framework that cover these points (

  • 4 I NBCP Neonatal Death Bereavement Care Pathway NBCP for use in England from September 2019


    Delivering difficult news Prepare parents for difficult news and inform parents something may be wrong as soon as it is suspected.

    Prepare yourself for giving difficult news by gathering information and consulting with colleagues, if possible.

    Find an appropriate place or, if in the delivery room/neonatal unit, offer a separate private space once the news has been given.

    Ask the parent(s) whether they would like a support person present.

    Use clear, straightforward language, no euphemisms or jargon.

    Give parents time to absorb news and answer any questions you are able to, within your scope of practice.

    Give parents information about what happens next, provide written information and named contact with contact details (see Contact card, available at

    Consider onward transport needs.

    If there is one or more surviving sibling from a multiple birth, do not focus solely on them. Acknowledge the baby who has died.

    A. Delivering difficult news

    Place of care If being cared for on an open-plan unit, be aware of the possible interactions between different families in the unit.

    If a single family room is being used, ensure that parents do not feel alone or abandoned, while ensuring that they are given space if this is what the family request.

    Be aware that some parents may need to make special arrangements to enable them to stay at the hospital for any length of time – provide information and support if necessary.

    Let parents know about the financial support available to them through benefits, the health service or local charities.

    Recommendations: when a baby dies neonatally

    If the mother is ill If the mother is in the same hospital but is unable to walk to the neonatal unit, and her physical condition allows, bring her to the unit in a wheelchair or hospital bed.

    If the baby has to be transferred to a regional unit and the mother cannot be moved with them, ask staff at the referring hospital to phone the regional unit regularly to check the baby’s progress and pass on the information.

    Provide digital pictures or videos of the baby to help ensure the family has updates on the baby’s progress (though always give difficult news face to face).

  • NBCP Neonatal Death Bereavement Care Pathway I 5NBCP for use in England from September 2019

    1 A. Delivering difficult news continued

    Talking to parents about their baby’s condition

    Give parents clear, understandable, consistent and honest information about all tests, developments and interventions.

    At the end of formal discussions, give parents a time when they can meet with staff again.

    Give parents designated members of staff (including a named nurse) who take the main responsibility for checking that they feel informed and listened to, and who are present when sensitive and difficult issues and decisions are discussed with them.

    Making decisions about critical care

    Offer parents the opportunity to participate in all important decisions about the care of their baby, including critical care decisions.

    Communicate openly and honestly with parents about their baby’s condition from the time of diagnosis.

    Parallel or anticipatory planning may be helpful – care plans can be discussed by staff and parents for active treatment while also planning for palliative or end-of-life care should it become necessary.

    During discussions about critical care, treat parents as full partners and always with respect and dignity.

    See also NHS, BAPM and Bliss guidance: spec-services/npc-crg/group-e/e08/ wp-content/uploads/2017/04/Neonatal- Critical-Care-Quality-Indicators-140617- Final-2.pdf %E2%80%9Cneonatal-service-quality- indicators%E2%80%9D-developed- bapm-and-endorsed-bliss-out-now bliss-baby-charter/

    Withholding or withdrawing life sustaining treatment

    Fully explain the baby’s condition and options for care, including parents’ options for symptom control and taking the baby home or to a hospice.

    Offer information about local resources available to support parents.

    Decision making is a process – another appointment should be arranged for parents to discuss their baby’s care further with a senior member of their care team.

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    Care for parents around the time of their baby’s death

    If parents want to hold their baby before th