Regional Bereavement Guidance on evidence-based, holistic care of parents and their families after the experience of miscarriage, stillbirth or neonatal death November 2014 Updated December 2015 Acknowledgements The Department of Health, Social Services and Public Safety (DHSSPS) and Northern Ireland Practice and Education Council (NIPEC) wish to acknowledge the valuable input of the Steering Group into the development of this regional guidance and corresponding pathways. In addition, thanks are also extended to the women and professional staff who gave up their time to attend regional workshops and to provide comments on the guidance and pathways. Contents Page 1.0 Introduction and strategic context 4 2.0 Purpose of this guide 5 3.0 Women and family-centered choices 5 4.0 Spiritual, religious and cultural support 6 5.0 Psychological and emotional aspects of care 7 6.0 Continuity of care and communication 7 7.0 Record keeping 9 8.0 Role of Coroner 14 Role of Northern Ireland Maternal and Child Health 9.0 15 (NIMACH) 10.0 Multidisciplinary team support and care 16 11.0 Use of Regional Bereavement Pathways 18 12.0 Pregnancy Loss up to 12 weeks 18 13.0 Pregnancy Loss from 12 weeks to 20 completed weeks 20 14.0 Pregnancy Loss from 20 weeks or later 20 15.0 Neonatal Loss 24 16.0 Useful contacts 28 1.0 Introduction and strategic context Sensitive, thoughtful care cannot take away the pain of a woman'1 who loses a baby at any gestational age, but it may provide some comfort in the months and years to come. It is also recognised that a compassionate and sensitive approach throughout all the procedures and processes surrounding death can impact positively on the grieving process2. Establishing bereavement pathways should ensure continuity and consistency in approach, which are so important at a time when parents and in particular, women are very vulnerable. The interaction among all those involved in the care of parents and their families is dynamic, unique but sometimes unpredictable. Research confirms that good care can affect parents’ long-term wellbeing and may prevent the need for costly intervention later3. In addition, evidence shows that listening to parents about the care they receive around the time of their baby’s death is extremely important4. The Northern Ireland Bereavement Strategy (2009) identifies six standards of care to assist Health and Social Care in the delivery of services at the end of life. The standards highlight the importance of promoting safe, effective care and support, to include effective communication to bereaved families and relatives. In Northern Ireland, there is a stillbirth rate of approximately 4.5, perinatal mortality rate of 6.35 and neonatal mortality rate of 4.6 per 1,000 births.5 Miscarriage occurs in 10–20% of clinical pregnancies and accounts for 50,000 inpatient admissions to hospitals in the UK annually (RCOG 2006). Every day in the UK, 17 babies are 1Woman - will refer to women, partners and their families throughout this document 2 Department of Health, Social Services and Public Safety, (DHSSPS 2009).Northern Ireland Health and Social Care Services Strategy for Bereavement Care. Belfast, 2009. 3Stillbirth and Neonatal Death Society, (SANDS 2011). The Sands Audit Tool for maternity services. Caring for parents whose baby has died. London, 2011. 4Royal College of Obstetricians and Gynecologists, (RCOG 2006). The Management of Early Pregnancy Loss: Clinical Green Top Guideline No 25, London. http://www.rcog.org.uk/womens-health/clinical-guidance/management-earlypregnancy-loss-green- top-25 (assessed 15th Nov 2012). 5http://www.nisra.gov.uk/archive/demography/publications/births_deaths/deaths_2013.pdfrthern Ireland Registrar General Northern IrelandAnnual Report 2013November 2014 Page 4 of 32 stillborn or die shortly after birth, and there are almost 6,500 baby deaths every year. Over two-thirds of these stillbirths and deaths occur in maternity units. 2.0 Purpose of this guide The aim is to aid professionals in providing support to women and their families throughout the time of the loss of their baby. This guide should be read in conjunction with the relevant regional care pathway (depending on gestation of pregnancy loss). The overarching aim is to: promote a sensitive and thoughtful parent and family-centered approach to care provide health professionals and others with the guiding principles of good evidence-based practice establish a regional standard of care throughout Northern Ireland by the implementation of the Regional Bereavement Pathways for Care provide guidance around the various legislations, for example, The Human Tissue Act 20046. 3.0 Women and family centered choices Pregnancy loss can occur in many different circumstances, and parents and families being told that their baby has died before or around birth is devastating. The grief experienced by parents, close relatives and friends is extremely distressing. They will therefore require considerable support from all health and social care staff who care for, or come into contact with them during this time. Long-term emotional support is essential and extremely beneficial. General Practices and some of the charitable organisations offer support to anyone affected by the death of a baby before, during or shortly after birth. 6 The Human Tissue Act 2004 accessed at http://www.hta.gov.uk/legislationpoliciesandcodesofpractice/legislation/humantissueact.cfm Page 5 of 32 No matter how or when a pregnancy has ended a woman's individual needs must be carefully and It is recommended that sensitively addressed. Adequate time should be Health and Social Care given to provide verbal and written information Trusts should ensure the and support, as there are a number of different services of a dedicated choices available in relation to bereavement care. Bereavement Midwife who Women and their families need time to reflect in would have the capacity to provide continuity of care to order to make choices that are best suited to their women and their families. needs. 4.0 Spiritual, religious and cultural support Women and their families will have access to relevant cultural, religious and spiritual support. This can be either through hospital staff (Chaplains) or through their own personal contacts. There should be availability of a multi-faith room or quiet facility where parents and their families can spend time together. Staff need to ensure that they are fully aware of the options available to women and their families in order to discuss these with them to make informed decisions. If possible, staff should ascertain the parents' wishes and requirements for any specific cultural or religious customs. These may include decisions regarding the parents' last wishes for remains, taking their baby home, funeral arrangements, reflecting on the impact of different faith and/or religious beliefs. Parents should have the opportunity to make their own personal choices regarding memories. They should also be informed of memorial events, either those that are organised through the Trust, for example, Book of Remembrance/Annual Memorial Services or other memorial events. Staff should be mindful of the need for this opportunity for parents to create positive memories and physical mementoes to provide a focus for their grief. These reminders will prove to be invaluable for the women and their families during the grieving process and beyond. Page 6 of 32 5.0 Psychological and emotional aspects of care Opportunities to allow for reflection by women and their families must be planned as part of the management of care. They may have lots of questions and seek answers as to why their baby has died. In particular, they may also have questions on what happens next and about the physical and emotional reactions they are likely to experience. Staff should inform parents of the availability and range of relevant support services and provide contact details if required. All midwives and medical staff have responsibility in providing compassionate care and support. The role of a dedicated Bereavement Midwife is an important one as it will provide consistent advisory support to professionals and vital counselling services to women and their families. For a small number of women however, the services of an accredited counsellor should be offered. 6.0 Continuity of care and communication It is important to work in partnership with parents and their families, keeping them informed about the plan of management of their care before, during and after the loss of their baby. The importance of continuity of care and carer, the involvement of senior clinicians and effective communication in the co-ordination of care is paramount. Less experienced staff can be involved in the care with supervision and support. They should be present during any discussions with the parents so that they are fully conversant with the care plan and can gain valuable experience and develop their skills in bereavement care. The holistic approach to care including good communication in relation to referrals and handover of care should improve co-ordination and avoid unnecessary repeated questioning, thereby impacting positively on the overall experience of the parents and families. Page 7 of 32 It is also important that professionals caring for these parents and families protect the dignity of the bereaved parents by showing respect and understanding of the distress they are experiencing78 'Never forget the tissue you hold in your For this to become a reality Trusts and hands isn't just a piece of tissue, it is a mum individual professionals need to acknowledge and dad’s baby son or daughter, a baby the impact perinatal loss and subsequent care they had hopes, dreams and aspirations for' can have on bereaved parents and recognise Quote from Peter and Lynne Ross, bereaved parents of baby Ruth that efforts must be made to ensure that parents' grief and distress is not unnecessarily exacerbated9.