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National Standards for
Bereavement Care following
Pregnancy Loss and Perinatal Death
Ciaran Browne
• Ciarán Browne PhD General Manager, HSE Acute Hospital Division
• Ms June Boulger National Lead, Patient and Public Involvement in Healthcare at HSE
• Ms Helen Byrnes Clinical Midwife Manager 2, University Hospital Galway
• Barbara Coughlan PhD Lecturer, School of Nursing, Midwifery and Health Systems, UCD
• Dr Joanne Fenton Perinatal Psychiatrist, HSE
• Ms Marie Hunt Clinical Midwife Specialist in Bereavement, University Maternity Limerick
• Ms Orla Keegan Head of Education, Irish Hospice Foundation
• Dr Máiread Kennelly Obstetrician & Fetal Medicine Specialist, Coombe
• Ms Anne McKeown Bereavement Liaison Officer, University Hospital Galway
• Mary Moran PhD Lecturer Obstetric/Gynaecology Ultrasound Programmes UCD
• Ms Fiona Mulligan Bereavement Support Midwife, Our Lady of Lourdes Hospital, Drogheda
• Ms Aileen Mulvihill Senior Medical Social Worker, Specialist Palliative Care, Roscommon
• Rev. Daniel Nuzum Chaplain, Cork University Maternity Hospital
• Dr Keelin O’Donoghue Consultant and Senior Lecturer, Obstetrics & Gyn, Cork University
• Ms Grace O’Sullivan Hospice Friendly Hospitals Programme Coordinator, IHF
• Ms Sara Rock Clinical Nurse Manager 2 (Neonatology), National Maternity Hospital
• Ms Laura Rooney Ferris Librarian, Irish Hospice Foundation
• Ms Bríd Shine Clinical Midwife Specialist in Bereavement and Loss, Coombe Hospital
• Professor Martin White Consultant Neonatologist, Coombe Hospital
• Ms Kathryn Woods Clinical Midwife Specialist in Bereavement, Mullingar Hospital
Project Manager
• Anne Bergin PhD Coombe Women and Infants University Hospital
Origins of the Standards
HSE National Incident Management Team (NIMT) 50278 (2013) report:
• ‘ensure that the psychological impact of inevitable miscarriage is
appropriately considered and that a member of staff is available to
offer immediate support and information at diagnosis. Members of
staff should also advise of the availability of counselling services for
women and partners at diagnosis. Care given, including counselling
and support, should be documented. The availability of counselling
services for women, partners and families who have suffered any
incident or bereavement in childbirth should be reviewed,
considered and developed as appropriate at each maternity site’.
Boylan Report
• Each hospital should appoint bereavement counsellors trained to
deal with perinatal deaths
Profile of Pregnancy Loss and Perinatal Death
• 500 perinatal deaths in Ireland in 2013 (National Perinatal
Epidemiology Centre, 2015).
– 301 stillbirths
– 162 early neonatal deaths (within 7 days of birth)
– 37 late neonatal deaths (7-28 days of birth).
• Miscarriage occurs in approximately one fifth of
clinical pregnancies -approximately 14,000
miscarriages per annum
• 26 terminations of pregnancy in Ireland carried out
under the Protection of Life during Pregnancy Act in
2014.
• 3,735 terminations undertaken in England and Wales
in 2014
Approach
• Two areas:
– Bereavement Care Standards for Pregnancy Loss and Perinatal Death
– Maternal Death Guideline
• Consultation process
– 6 public meetings
– 200 organisations given copy
– 165 submissions received (75% from public)
• Located within Acute Hospital Division operational line
• National Implementation Group
• Linked in to National Maternity Strategy, HIQA Draft Maternity
Standards, Safer Better Healthcare Standards
• Building upon previous IHF Standards
• Palliative Care Competency Framework
Ectopic
Pregnancy
First-
trimester
Miscarriag
e
Second-
trimester
Miscarriag
e
Baby
diagnosed in
utero with a
Life-limiting
Condition
Intra-
uterine
Fetal
Death,
Stillbirth
and Early
Neonatal
Death
Baby
born
with a
Life-
limiting
Conditi
on
Suitable rooms are available in the
Admission Unit/Ultrasound Department to
facilitate discussion and provide support to
the mother/parents when bad news is
broken.
     
If the mother is unaccompanied, staff
always offer to contact her partner, a
relative or a friend. Staff will strive to
ensure that she does not leave the hospital
alone.
     
Following the diagnosis of an ectopic
pregnancy or first trimester miscarriage
parents are given time to reflect on the
diagnosis and discuss the woman’s
treatment options
     
Ectopic
Pregnancy
First-trimester
Miscarriage
Second-trimester
Miscarriage
Baby
diagnosed in
utero with a
Life-limiting
Condition
Intra-uterine
Fetal Death,
Stillbirth and
Early Neonatal
Death
Baby born
with a Life-
limiting
Condition
If the baby is likely to be admitted to a Neonatal Intensive
Care Unit, and where feasible, the parents are offered an
opportunity to visit the unit before the baby is born.
     
Following a diagnosis of pregnancy loss or anticipated
stillbirth or birth of a baby with a life-limiting condition
parents are invited to meet with a member of the BST.
     
Parents are offered two types of information – written
information specific to the diagnosis (to supplement the
discussions they have had with their obstetrician,
paediatrician/neonatologist and midwife) and written
information about the local, community and hospital
specialist services available, which should include the
details of a named health professional and a phone
number that they can contact if required. When required,
information is translated.
     
Parents awaiting the spontaneous onset of labour or
spontaneous miscarriage are given the details of a named
health professional and a phone number that they can
contact if required. A system of prompt admission to a
ward such as by the use of a direct admission card should
be provided by hospitals and recognised by all staff.
     
Standards Areas
• Bereavement Care
– Diagnosis, Treatment Options, Preparing for the Birth, Admission, Post
Natal Care, Preparing for Discharge, Bereavement Care Post Discharge
• The Hospital
– Culture of Compassionate Care, Governance, Effective
Communication, Healthcare Record, Hospital Environment, Multi-
disciplinary working, Clinical Ethics Support, Care after Death, PMs
• Baby and parents
– Communicating diagnosis, parental preferences, pain / symptom
management, discharge home,
• Staff
– Supporting compassionate bereavement care, staff induction and
education, direct staff support
Bereavement Specialist Teams
• BST is composed of staff members who have undertaken
specialist and extensive education in bereavement care.
• Team Composition
– Bereavement coordinator
– Clinical Midwife Specialist in Bereavement
– Chaplain
– Senior medical social worker
• Team supported by the hospital CEO, director of midwifery,
clinical leads, obstetricians, paediatricians, neonatologists,
perinatal psychiatrist, midwives, nurses, neonatal care nurses,
ministers of religions, palliative care teams, bereavement
committees, end-of-life care committees, administrative and
auxiliary staff
• Clinical Midwife Specialists in each Maternity Unit – NSP 2016
Maternal Death Guideline
• 22 Maternal Deaths (direct and indirect)
– 2011 - 2013
• National Sub-group developing Guideline to
guide hospital acute response to a maternal
death
• Advanced draft for consultation
Implementation
• National Implementation Group
• Women and Infants Programme (in AHD)
• Implementation lead and FT project manager
• Assigned budget
• Hospital Group CEO Support
• NIG combines bereavement / clinical care
“experts” with operational implementers
• Linked to National Maternity Strategy and
HIQA Maternity Standards
Other initiatives – General Hospital
• Hospice Friendly Hospitals
– General Acute
– Maternity
• Florence Nightingale Foundation - Leaders for
Compassionate Care Programme
• Hello my name is….
• National Patient Forums
• National Patient Experience

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National Standards for Bereavement Care following Pregnancy Loss and Perinatal Death' by Dr. Ciaran Browne (Presentation at HFH 2016 Conference)

  • 1. National Standards for Bereavement Care following Pregnancy Loss and Perinatal Death Ciaran Browne
  • 2. • Ciarán Browne PhD General Manager, HSE Acute Hospital Division • Ms June Boulger National Lead, Patient and Public Involvement in Healthcare at HSE • Ms Helen Byrnes Clinical Midwife Manager 2, University Hospital Galway • Barbara Coughlan PhD Lecturer, School of Nursing, Midwifery and Health Systems, UCD • Dr Joanne Fenton Perinatal Psychiatrist, HSE • Ms Marie Hunt Clinical Midwife Specialist in Bereavement, University Maternity Limerick • Ms Orla Keegan Head of Education, Irish Hospice Foundation • Dr Máiread Kennelly Obstetrician & Fetal Medicine Specialist, Coombe • Ms Anne McKeown Bereavement Liaison Officer, University Hospital Galway • Mary Moran PhD Lecturer Obstetric/Gynaecology Ultrasound Programmes UCD • Ms Fiona Mulligan Bereavement Support Midwife, Our Lady of Lourdes Hospital, Drogheda • Ms Aileen Mulvihill Senior Medical Social Worker, Specialist Palliative Care, Roscommon • Rev. Daniel Nuzum Chaplain, Cork University Maternity Hospital • Dr Keelin O’Donoghue Consultant and Senior Lecturer, Obstetrics & Gyn, Cork University • Ms Grace O’Sullivan Hospice Friendly Hospitals Programme Coordinator, IHF • Ms Sara Rock Clinical Nurse Manager 2 (Neonatology), National Maternity Hospital • Ms Laura Rooney Ferris Librarian, Irish Hospice Foundation • Ms Bríd Shine Clinical Midwife Specialist in Bereavement and Loss, Coombe Hospital • Professor Martin White Consultant Neonatologist, Coombe Hospital • Ms Kathryn Woods Clinical Midwife Specialist in Bereavement, Mullingar Hospital Project Manager • Anne Bergin PhD Coombe Women and Infants University Hospital
  • 3. Origins of the Standards HSE National Incident Management Team (NIMT) 50278 (2013) report: • ‘ensure that the psychological impact of inevitable miscarriage is appropriately considered and that a member of staff is available to offer immediate support and information at diagnosis. Members of staff should also advise of the availability of counselling services for women and partners at diagnosis. Care given, including counselling and support, should be documented. The availability of counselling services for women, partners and families who have suffered any incident or bereavement in childbirth should be reviewed, considered and developed as appropriate at each maternity site’. Boylan Report • Each hospital should appoint bereavement counsellors trained to deal with perinatal deaths
  • 4. Profile of Pregnancy Loss and Perinatal Death • 500 perinatal deaths in Ireland in 2013 (National Perinatal Epidemiology Centre, 2015). – 301 stillbirths – 162 early neonatal deaths (within 7 days of birth) – 37 late neonatal deaths (7-28 days of birth). • Miscarriage occurs in approximately one fifth of clinical pregnancies -approximately 14,000 miscarriages per annum • 26 terminations of pregnancy in Ireland carried out under the Protection of Life during Pregnancy Act in 2014. • 3,735 terminations undertaken in England and Wales in 2014
  • 5. Approach • Two areas: – Bereavement Care Standards for Pregnancy Loss and Perinatal Death – Maternal Death Guideline • Consultation process – 6 public meetings – 200 organisations given copy – 165 submissions received (75% from public) • Located within Acute Hospital Division operational line • National Implementation Group • Linked in to National Maternity Strategy, HIQA Draft Maternity Standards, Safer Better Healthcare Standards • Building upon previous IHF Standards • Palliative Care Competency Framework
  • 6. Ectopic Pregnancy First- trimester Miscarriag e Second- trimester Miscarriag e Baby diagnosed in utero with a Life-limiting Condition Intra- uterine Fetal Death, Stillbirth and Early Neonatal Death Baby born with a Life- limiting Conditi on Suitable rooms are available in the Admission Unit/Ultrasound Department to facilitate discussion and provide support to the mother/parents when bad news is broken.       If the mother is unaccompanied, staff always offer to contact her partner, a relative or a friend. Staff will strive to ensure that she does not leave the hospital alone.       Following the diagnosis of an ectopic pregnancy or first trimester miscarriage parents are given time to reflect on the diagnosis and discuss the woman’s treatment options      
  • 7. Ectopic Pregnancy First-trimester Miscarriage Second-trimester Miscarriage Baby diagnosed in utero with a Life-limiting Condition Intra-uterine Fetal Death, Stillbirth and Early Neonatal Death Baby born with a Life- limiting Condition If the baby is likely to be admitted to a Neonatal Intensive Care Unit, and where feasible, the parents are offered an opportunity to visit the unit before the baby is born.       Following a diagnosis of pregnancy loss or anticipated stillbirth or birth of a baby with a life-limiting condition parents are invited to meet with a member of the BST.       Parents are offered two types of information – written information specific to the diagnosis (to supplement the discussions they have had with their obstetrician, paediatrician/neonatologist and midwife) and written information about the local, community and hospital specialist services available, which should include the details of a named health professional and a phone number that they can contact if required. When required, information is translated.       Parents awaiting the spontaneous onset of labour or spontaneous miscarriage are given the details of a named health professional and a phone number that they can contact if required. A system of prompt admission to a ward such as by the use of a direct admission card should be provided by hospitals and recognised by all staff.      
  • 8. Standards Areas • Bereavement Care – Diagnosis, Treatment Options, Preparing for the Birth, Admission, Post Natal Care, Preparing for Discharge, Bereavement Care Post Discharge • The Hospital – Culture of Compassionate Care, Governance, Effective Communication, Healthcare Record, Hospital Environment, Multi- disciplinary working, Clinical Ethics Support, Care after Death, PMs • Baby and parents – Communicating diagnosis, parental preferences, pain / symptom management, discharge home, • Staff – Supporting compassionate bereavement care, staff induction and education, direct staff support
  • 9. Bereavement Specialist Teams • BST is composed of staff members who have undertaken specialist and extensive education in bereavement care. • Team Composition – Bereavement coordinator – Clinical Midwife Specialist in Bereavement – Chaplain – Senior medical social worker • Team supported by the hospital CEO, director of midwifery, clinical leads, obstetricians, paediatricians, neonatologists, perinatal psychiatrist, midwives, nurses, neonatal care nurses, ministers of religions, palliative care teams, bereavement committees, end-of-life care committees, administrative and auxiliary staff • Clinical Midwife Specialists in each Maternity Unit – NSP 2016
  • 10. Maternal Death Guideline • 22 Maternal Deaths (direct and indirect) – 2011 - 2013 • National Sub-group developing Guideline to guide hospital acute response to a maternal death • Advanced draft for consultation
  • 11. Implementation • National Implementation Group • Women and Infants Programme (in AHD) • Implementation lead and FT project manager • Assigned budget • Hospital Group CEO Support • NIG combines bereavement / clinical care “experts” with operational implementers • Linked to National Maternity Strategy and HIQA Maternity Standards
  • 12. Other initiatives – General Hospital • Hospice Friendly Hospitals – General Acute – Maternity • Florence Nightingale Foundation - Leaders for Compassionate Care Programme • Hello my name is…. • National Patient Forums • National Patient Experience