This reflective paper seeks to explore some of the issues surrounding bereavement care and the importance of sensitive and individualised care when dealing with bereaved parents. Reflection is a key concept of learning within the health and social care professions that allows us to look at our practice and understand it within the context in which it occurs (O'Carroll and Park, 2007). Without reflection, midwifery care can become automatic, thereby disregarding the concept of individualised care, which is outlined in the Nursing and Midwifery Council (NMC) code of conduct (2008). Reid (1993) described a process of reviewing experience under headings such as description, feelings, evaluation and analysis, which consequently informs and changes practice. A variety of reflective models currently exist, which involve this systematic process (Van Manen, 1977; Gibbs, 1988; Driscoll, 2007). This reflective case study will adopt Borton's (1970) developmental framework, which incorporates all the core skills of reflection from these current models, yet its simplicity is useful for those inexperienced in undertaking deeper reflection (Jasper et al, 2013). Through Borton's (1970) framework, the practitioner describes (what), analyses (so what) and synthesises (now what) their experience. All names have been changed to protect confidentiality, in accordance with NMC (2008) guidelines.
Amanda, a 43-year-old para 5 was admitted to hospital for medical induction of labour in view of a 27-week intrauterine fetal death. At handover for a late shift, I was asked whether I would be willing to care for Amanda, which would enable me to gain experience in this field. I had not had much exposure to bereavement care during my time as a student midwife, therefore I felt unprepared to deal with it. Instead, my training largely involved ‘catching’ babies so that I could be signed off as competent in facilitating ‘normal’ birth. Nevertheless, I reluctantly volunteered, meanwhile experiencing feelings of panic and anxiety. I had never dealt with such a situation before. What would I say? What if I said the wrong thing?
A stillbirth, as defined by the Stillbirth (Definition) Act 1992, section 1(1), is:
‘Any ‘child’ expelled or issued forth from its mother after the 24th week of pregnancy that did not breathe or show any other signs of life.’
Research has shown that almost 3 million babies worldwide are born stillborn every year (Mullan and Horton, 2011). This means that every day, 11 sets of parents will suffer the pain and grief of having a stillborn baby. Despite cumulative advances in medical science and an ever developing health system (Mullan and Horton, 2011), in the UK, the rate of unexplained stillbirths runs exceedingly higher, at approximately 1000 a year, than deaths from sudden infant death syndrome (SIDS), which is about 200 deaths per year (Henley and Schott, 2010). Despite this wide variation, there appears to be little research conducted on why babies die unexpectedly in utero. It could be possible that the topic of stillbirth is often overlooked because of its profoundly emotive nature and complexity. While causes of stillbirth may be multifactorial, and sometimes unexplained, the highest associated modifiable factor is maternal obesity and overweight, comprising of a body mass index (BMI) above 25kg/m2 (Flenady et al, 2011).
Although a meta-analysis of 96 population-based studies by Gardosi et al (2013) observed an association between nulliparity and stillbirth, they also found a 60% increase in stillbirth risk for mothers with a parity equal to 3 or above. Gardosi and colleagues found no significant increase in the risk of stillbirth with older maternal age, however, it could be argued that this correlation was not found because congenital anomalies were excluded, which are known to be increased in older mothers. It could be argued that women of advanced childbearing age are more likely to experience infertility, therefore they may rely heavily on artificial reproductive techniques, however, the link between these and stillbirth risk is unknown (McDonald et al, 2005). Substantial variations in stillbirth rates have also been found in relation to social status and ethnicity (Gissler et al, 2009). This may be a result of poor accessibility to care, as well as language and cultural barriers from disadvantaged groups.
Stillbirth rates in the UK are among the highest in high income countries (Flenady et al, 2011). Around one baby, out of every 200, at 22 weeks' gestation or more is stillborn. The reason for this rate remains unexplained, although a lack of awareness among health professionals has shown to be a large contributory factor (Mullan and Horton, 2011). The care that families receive during this time is extremely important, yet it is influenced to a large extent by knowledge and education and the midwives' ability to provide individualised care. An analysis of mortality data collated between 2007 and 2012, found that a high uptake of accreditation training and evidence-based protocols in customised fetal growth assessment, contributed to a steep decline in stillbirth rates (Gardosi et al, 2013). Nevertheless, while this is the gold standard for most midwives, it is difficult to implement when faced with a rising birth rate, increased case complexity and minimal staffing, as well as a disparity of training and local restrictions imposed by financial constraints (Henley and Schott, 2010). A survey of 77 maternity units found that regular training in bereavement care was only present in less than half of the units and that, in the majority of these units, training was only optional because of pressures on staff time, training costs and the sensitivity of the subject matter (Henley and Schott, 2010). Despite this, midwives are still expected to interact supportively with bereaved parents (Cox and Briggs, 2004).
Specialist bereavement midwives play an invaluable role in supporting both parents and staff, however, the specialist midwife in our unit was off duty for this particular shift. Therefore, my role as a midwife was crucial in supporting and advocating for Amanda and her partner John. Luckily, as it was a quiet shift, I had the support of my shift leader who has many years of experience in bereavement care.
I first obtained an in-depth handover from the midwife who had been caring for Amanda, before I introduced myself to her and her partner, John. I was informed that a scan 3 days previously had shown a hydropic fetus with a large bowel atresia and an absent fetal heart. Shortly after, I went to see Amanda who was being cared for in one of our specialist bereavement rooms at the far end of the labour ward. The provision of these dedicated rooms has a fundamental impact on couples' experiences (Henley and Schott, 2010). During introductions, my palms began to sweat and my heart beat faster as I struggled to choose the right words to say. Did I need to say anything? I had this feeling in the forefront of my mind that nothing I said could make them feel better, but that saying the wrong thing could have a massive impact on their emotional wellbeing and subsequent mental health. Having a stillborn baby has been associated with an increase in anxiety, depression, suicidal ideation, as well as substance use and marital conflict, which can persist for many years (Cacciatore et al, 2008). Consequently, I felt helpless, unable to offer any form of comfort. Säflund et al (2004) found that midwives felt the need to distance themselves from bereaved parents because they felt unable to deal with the enormity of the parent's feelings of loss. I was so used to caring for women with healthy, term pregnancies and, having been present at well over a hundred births, the expected and automatic cry of a healthy baby. In healthy pregnancies and births, I would speak with couples about parenting, feeding and tending to their babies, and their expectations, yet in bereaved parents these conversations do not exist. Instead I was caring for a woman and her partner who were submerged in grief and sorrow, these parents may experience feelings of guilt as a result of the expectation of a healthy baby. They will not feel the same excitement, joy and euphoria of bringing a new life into the world.
One concern I had was the documentation, which is ever increasing due to prospect of litigation. Failure to fill in the correct form, or sending it to the wrong place will lead to an official reprimand or managerial intervention, and this presents as a genuine fear (Kenworthy and Kirkham, 2011). There are forms to be filled out surrounding the birth as well as the stillbirth certificate that is a statutory obligation after 24 weeks' gestation (Henley and Schott, 2010). It is understandable that feelings of anxiety and stress can impact on the accidental omission of essential paperwork (Kenworthy and Kirkham, 2011). There is information that is only collected by obtaining tissue samples, such as those for cytogenics investigation, as well as a need to prepare the baby for viewing and organising mementos. I feel strongly that had I not had support from my colleagues, the burden of the documentation would have impacted negatively on my provision of care to Amanda and John. This is disconcerting at a time when we may need to console the woman and her family and provide extra support.
Throughout the shift, my priorities were to manage Amanda's pain and monitor both her vital signs and loss per vaginum, following 3-hourly administration of oral misoprostol. Following the second dose, she began to experience abdominal cramps which were somewhat relieved with intramuscular diamorphine, yet as the shift progressed her pain became more intense with increased regularity, and so she began to use Entonox frequently. I anticipated a quick birth due to Amanda's parity and previous precipitate labours, yet I did not say much, I felt like I did not need to. I mopped her brow, gave her sips of water and held her hand. This sensitive support is the most poignant aspect of bereavement care, forming many of the memories that parents will take home with them (Henley and Schott, 2010). Towards the end of the shift, she ruptured her membranes and sighed in relief, expressing gratitude, thinking the worst was over. The whole situation felt so unjust, why should she be thanking us. I felt as though she was being punished in some way; questioning why she should have to endure labour with no joy or happiness at the end. With the next contraction, tears rolled down both her cheeks as the reality of the situation took hold of her. I felt so unprepared to deal with the situation, so vulnerable, but I could not let it show. I knew the upset I was feeling was so minor in comparison. Shortly after she birthed her baby. He was so peaceful and content, so still. His tiny fingers and toes, his bottom lip curled under like he too felt the sadness both his mother and father were experiencing. I gently wrapped him in a towel before asking Amanda and John whether they would like to see and hold him.
Parents often regard holding and seeing their baby as one of their most important memories and Statham et al (2001) found that, of 104 women interviewed, 81% felt they made the right decision to hold their stillborn baby. A further study on over 2000 women, found that fewer anxiety and depressive symptoms resulted if women were able to see and hold their babies following a singleton stillbirth after 20 weeks' gestation (Cacciatore et al, 2008). To separate newly bereaved mothers from their dead babies in order to relieve them of the burden of holding and seeing their baby and taking any responsibility for them was the cultural norm in Britain until relatively recently (Broderick and Cochrane, 2013). We now see the error in this reasoning and know that women and their partners value this time to spend with their babies (Statham 2001; Broderick and Cochrane, 2013). It has been argued that giving parents the opportunity to see and hold their stillborn baby can reduce the risk of depression and anxiety resulting from the traumatic experience (Hughes et al, 2001). Conversely, Statham (2001) found that 50% of women who chose not to hold their baby also felt they had made the right decision, whilst Trulsson and Radestad (2004) argue that forcing parents to see and hold their stillborn baby has potential to increase the risk of negative psychiatric sequelae. It is therefore important that women and their partners are treated as individuals and given the correct information to help them make informed choices—a recommendation further supported by the National Institute for Health and Care Excellence (NICE) (2007).
‘Giving parents the opportunity to see and hold their stillborn baby can reduce the risk of depression and anxiety resulting from the traumatic experience’
Amanda was reluctant to hold her baby initially as she began to process the situation. Instead John took hold of him and closely studied his baby from head to toe. He then gradually revealed his hands and feet to Amanda before gently placing him in her arms. It was nothing a textbook could prepare you for, those shivers you feel down your spine as well as the lump in your throat as you hear a mothers' grieving sob, or the haunting silence that no guideline or policy talks about. It felt as though the world had come to a standstill. I gently took a step back to allow Amanda and John the precious time with their baby boy.
While caring for Amanda initially brought feelings of anguish and worry, I feel that it was a positive act that enabled me to confront my fears surrounding bereavement and pregnancy loss. Despite the distressing nature of the experience, the opportunity has helped me to develop my midwifery practice in order to incorporate aspects that are imperative to bereavement care. Women are coming into hospital, usually the labour ward, where there are babies and new mothers surrounding them, therefore it is important for us as professionals to prepare ourselves for the myriad of reactions that women and their families will present following pregnancy loss.
There is also an element of self-care that is not widely discussed in midwifery literature. It involves acknowledging that women should not be left alone to grieve, but also balancing this with the appreciation of the emotional burden to the midwife that is offering their support (Kenworthy and Kirkham, 2011). Although some consider bereavement care as ‘part of the job’, midwives, irrespective of their professional status, will carry personal and undoubtedly painful experiences of bereavement themselves, which means support between colleagues is fundamental in order to make a positive difference to the care that women receive, and also to reduce feelings of isolation. This support may simply involve a 10-minute debrief in the midwives office, or an in-depth reflection, both of which I feel impacted positively on my ability to care for Amanda throughout this experience.
Through non-verbal communication, midwives can take cues from individual women and respond accordingly. Simply gauging women on an individual basis and bearing in mind that some will want to talk and others simply want a shoulder to cry on or a hand to hold. Furthermore, a ‘memory box’ made up of various mementos, such as hospital bands, a measuring tape, knitted blanket and photos may be offered. While some research has suggested these are unhelpful in helping parents to feel resolution following bereavement, Davies (2004) argues that they can be beneficial.
It is important to be honest and open with women in a sensitive manner without undermining their wishes or beliefs. She will remember her midwife and although she may feel that her midwife has dealt with many of women in her position, she should feel that every effort is being made to meet her individual needs. This could be achieved, in part, by referring to her baby by their name or sex, acknowledging them as a being, thus making it personal to that woman and her family. But most importantly of all, it involves being empathetic and compassionate. Simply, just letting them know you are there without having to say a word.
This reflective case study is centred on my experience as a midwife at caring for Amanda, and her partner John, following a stillbirth at 27 weeks' gestation. It focuses on the emotional aspects of care that are often overlooked, which during bereavement take precedent over the physical skills we easily take for granted. It highlights simple measures that can be adopted to support bereaved parents, while at the same time supporting colleagues. Stillbirth should not be a taboo subject, considering rates, both in the UK and worldwide, are at alarming levels. While a number of stillbirths are unpredictable and therefore unavoidable, pregnancy supervision for those women at risk should be increased and improvements in research and training considered. This is as well as acknowledging the importance of individualised care, sensitive communication and advocacy, all of which are fundamental principles which we are bound to by the NMC Code (2008).
‘There is a collective myth… that getting pregnant, staying pregnant, giving birth to a live baby… is simple, despite clear evidence that this is not the case’