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In March, Dr Keelin O’Donoghue, Consultant Obstetrician at Cork University Maternity Hospital (CUMH), began work to implement the new HSE National Standards for Bereavement Care Following Pregnancy Loss and Perinatal Death.
Published in August 2016, the standards define the care that parents and families can expect to receive following a pregnancy loss or perinatal death and focus on four areas, including bereavement care, the hospital, the baby and parents, and staff.
It is the first document to acknowledge pregnancy loss experienced by parents, regardless of the type of pregnancy loss.
The standards were developed in response to recommendations in the HSE’s investigation report into the death of Savita Halappanavar and the report of Dr Peter Boylan following his review of maternity cases at Midland Regional Hospital, Portlaoise.
Dr O’Donoghue, who is also a Principal Investigator in the Irish Centre for Fetal and Neonatal Translational Research (INFANT) at University College Cork (UCC), is 10 years a consultant in September and has held a number of national roles during this time.
She established the pregnancy loss team at CUMH as a multidisciplinary outfit working with bereavement midwives, social workers, chaplains and other healthcare staff.
Dr Keelin O’Donoghue, CUMH
From this, she developed and currently runs a clinical research group focused on pregnancy loss. Dr O’Donoghue was also a member of the national standards Development Group, which was set up in 2014 to produce an agreed consensus on standards for bereavement care in Ireland following pregnancy loss and perinatal death.
Following publication of the document, Dr O’Donoghue was asked to act as Chair of the National Implementation Group for the HSE national standards for bereavement care.
She officially took up the role in March after clarification and agreement on resources for the work programme were finalised with the HSE.
Ms Riona Cotter, a senior midwife based at CUMH, has been hired as a full-time programme manager to assist Dr O’Donoghue in her work and a two-year programme of work is now underway.
Both Dr O’Donoghue and Ms Cotter report to the HSE National Women and Infants Health Programme.
A National Implementation Group has been established comprising two obstetricians, a consultant neonatologist, consultant paediatrician, perinatal pathologist, consultant paediatrician with a special interest in palliative care, two bereavement and loss specialist midwives, a senior social worker, senior healthcare chaplain and neonatal nurse.
“The implementation group is specifically picked to represent the professions and it’s specifically picked to be relatively small. We have agreed and set up a number of work streams or sub-groups and members of the overall group will sit on and lead the work streams,” Dr O’Donoghue told the Medical Independent (MI).
Each member of the implementation group has given up their time in a voluntary capacity to help implement the standards, Dr O’Donoghue added.
Several work streams have been formed within the group, with at least one member of the implementation group sitting on each work stream. Input is then sought from other individuals with a special interest in the area that the work stream is examining.
“That allows us to draw in more people with a specific interest and ask them to help us on one particular area, so the amount they have to do would be less; the commitment is less,” Dr O’Donoghue explained.
One of the many work streams underway is titled ‘Policies and Procedures’. This involves looking at current guidelines in maternity units, how they are used and how they compare to the standards, in order to agree a consensus on national documentation.
“This work stream is aiming to try and reach a consensus on care pathways for all different types of pregnancy loss. While there are some national guidelines, clinical guidelines, they largely refer to medical care and not necessarily all the things that are in the standards around bereavement care and the approach to the bereaved parents and the logistics of looking after them,” Dr O’Donoghue told MI.
“You have to allow for units to have a separate identity and for some flexibility and if things are working in individual units, we don’t want to break that or upset that, but we are trying to achieve a coherent way of looking after parents in a variety of pregnancy loss situations so that it doesn’t differ hugely if you are in a small, medium or large maternity unit.
“There’s a lot of good work being done nationally in this area but it is a little disconnected… Like a lot of things in the health service, people are very busy working and don’t necessarily advertise the stuff they are doing well. We only ever get to hear about the stuff that goes wrong and we only ever get to hear about bereavement issues when something goes wrong…but for all of that, there is good care going on and some people are trying very hard and we’re not really seeing that very much.”
This is one of the reasons why Dr O’Donoghue and Ms Cotter are visiting all 19 maternity units in Ireland under the ‘Quality and Service Improvement’ work stream.
A greater understanding of the support and resources for bereavement care in place in units, and the policies, procedures and work being done, is being collected during visits.
According to Dr O’Donoghue, some units have old and outdated facilities but are doing superb work.
“Clearly, some units are struggling to provide all the services necessary to bereaved parents because they do not have the facilities, resources or specialist staff at present,” Dr O’Donoghue admitted.
One of the recommendations in the standards for bereavement care nationally is the presence of a bereavement specialist midwife and bereavement teams in every maternity unit.
Dr O’Donoghue stressed that the bereavement specialist midwife is a “vital individual” in maternity units.
“In the absence of bereavement specialist midwives in some of the units, there are people doing a very good job on the ground and doing their best and that’s very clear to me,” Dr O’Donoghue stated.
“There are people doing their best to do this work but there is no doubt that the addition of a bereavement specialist midwife would make a huge difference to the general maternity team in each of those hospitals. Unfortunately, we are very little further along with that. That process has been hugely delayed.
“The agreement to fund a bereavement specialist midwife in every maternity unit was signed-off in May 2016 and the funds were provided. It has taken a long time for that agreement to reach the point where the Hospital Groups are in the last two weeks advertising, finally, most of the posts in the units where there are no staff.”
Currently, there are nine maternity units with no bereavement specialist midwife, three other units have a clinical nurse specialist in post and every other unit has a midwife in place.
Other work streams underway, or to be established, include ‘Perinatal Palliative Care’, ‘Staff Education and Training’, and the development of a website with information on all organisations providing bereavement care in Ireland. A Parents’ Forum will also be established after the summer.
Fatal foetal abnormality
The work stream on ‘Perinatal Palliative Care’ will deal with scenarios around diagnosis of fatal foetal abnormality.
“Within that work stream, we are looking at how currently we can look after women who choose termination of pregnancy and those who continue their pregnancy. In that work stream, we know we need to be involved with some of the relevant support groups who are looking after parents and we also have to link with the neonatal programme, who are also doing some work on perinatal palliative care,” Dr O’Donoghue explained.
“Another work stream is about education and training and is looking at how we train staff and support them. That group is tasked with investigating the types of educational programmes that are out there for those who are training formally to a greater or lesser extent in bereavement care [and] what organisations are providing study days or training.
“We want to look at what is being done, what is being done well and obviously come up with some recommendations as regards what training and education all staff working in maternity units should attend or could attend.
“Within that group, there is also a need to discuss staff supports… for staff who have to deal with very difficult scenarios of pregnancy loss. We have to recognise there is an impact on healthcare staff …even the ones who are specialised in bereavement will need support. And the ones who encounter it less, or sometimes in a more tragic situation or a more unexpected situation or maybe late pregnancy loss, [it] is going to have a significant impact on them. We’re not dealing with that very well and doing that well as a group in obstetrics.”
The Parents’ Forum aims to have representation from a group of parents who have experienced different types of pregnancy loss.
The plan is to consult parents who have direct experience in pregnancy loss so that all recommendations made by the group will be reviewed by a representative body of parents.
“We need a voice for the parents to make sure we have communication toing-and-froing and to ensure that what we are producing is deemed to be reasonably appropriate and meeting the needs,” Dr O’Donoghue said.
Commenting on the entire work programme, Dr O’Donoghue outlined that a national meeting would be held early next year to review the work undertaken at that point.
“We are quite committed to implementing this and achieving it, but we can’t do it for all of the units. I can’t fix this in every unit. What we can do is provide the structures, the support, the help, the ideas, the documentation, the website. We can make it easier for them to do this but we can’t go and do it for them in every unit…We don’t want to be telling people what to do, but we want to facilitate them to do it themselves.”