Communication after pregnancy and baby loss

Baby loss is common. In the UK, there are an estimated 5000 pregnancy terminations for medical reasons annually, approximately 4000 babies are stillborn and one in four pregnancies end in early/late miscarriage.¹ In terms of physiology, pregnancy loss is often a relatively minor medical complication, but it can have profound, long-lasting psychological and socio-economic effects for parents.²

Patients' experiences depend heavily on the interactions they have with staff.³ Whilst good bereavement care cannot take away the pain of baby loss, it can significantly influence how parents deal with their grief. Good bereavement care has a positive impact on physiological status, resolution of symptoms, comfort and pain control.⁴ Conversely, suboptimal communication results in distrust, compromised safety and poor experience and memories.⁴ The 2016 NHS Maternity Review revealed that assumptions, misconceptions and insensitive communication after baby loss were commonplace, primarily because of a lack of staff training in how to talk to, and support, grieving parents.⁵

Baby loss and the role of the anaesthetist

The 2019 National Bereavement Care Pathway now stipulates that all staff who come into contact with bereaved parents should undergo bereavement care training.⁶ Anaesthetists are key members of the multidisciplinary team on the labour ward, often caring for women experiencing baby loss. Despite this role, anaesthetists do not usually receive training on communication after baby loss, thus exposing parents to further avoidable harm.

Non-obstetric anaesthetists may also care for patients with pregnancy loss: patients with ectopic or molar pregnancies or those undergoing surgical management of miscarriage are often managed in the emergency operating theatre. Here, training rarely encompasses the need for compassionate communication with a bereaved patient.

Terminology

The term ‘parents’ is used here to refer to expectant and bereaved mothers, fathers and partners. Furthermore, the word ‘baby’ is used to describe a child from early pregnancy through to birth. However, when caring for people who have experienced pregnancy/baby loss, healthcare professionals should explore sensitively which terminology is preferred by the patient.⁶ Some may view themselves as parents from the moment they learn they are, or were, pregnant, whereas others will not.⁶ Similarly, many conceptualise and use the term ‘baby’ from the moment they found out they were pregnant, whereas others are more comfortable with terminology, such as ‘embryo’, ‘fetus’ or ‘pregnancy’.⁶

Communicating with parents experiencing baby loss

Whilst all patients want safe and effective clinical management, the human aspects of care are equally important. All communication with parents experiencing pregnancy or baby loss must be sensitive, compassionate, non-judgemental and led by the parent. Compassion and understanding can be conveyed by being genuine and authentic. You might say, "I can only imagine how hard this is" or simply "I am so sorry". It is best to avoid assumptions about how parents are feeling, as each parent will be experiencing the loss of their baby in their own individual way. Phrases such as "I know how you feel" or "at least you know you can get pregnant" or "things happen for a reason" are usually unhelpful and should be avoided (P. Abramson, personal communication).

Parents often describe the importance of using clear and concise terminology and being honest and sensitive. The use of euphemisms, such as ‘passed away’ or ‘lost’, in place of clear language can hamper the grieving process. Euphemisms can be misleading and confusing, unless of course the parents choose to use such phrases, in which case it is appropriate for you to mirror their words. It is important to remember not to shy away from using words, such as ‘death’ and ‘dying’. Clear phraseology is even more pertinent for those for whom English is not their first language.

Around the time a baby dies, parents are likely to be in a state of shock, which may significantly affect their ability to process information. Information should be delivered concisely and medical jargon avoided. Importantly, healthcare professionals should listen carefully to the parents' views and concerns and allow time for questions, which should be answered clearly and succinctly. Cultural norms or personal circumstances may affect parents' preparedness to express their wishes, and if so, ask questions or request clarification.⁶

Using warm, open body language by sitting near parents, facing them, making eye contact and using touch, if appropriate, communicates a strong, supportive message.⁶ It is acceptable to demonstrate some of your own emotions, but parents should not feel burdened by this.⁶

For patients with sensory impairments, learning difficulties or language barriers, staff should ask parents if and what supplementary support is required and about their preferences.⁶ This information should be clearly documented in the medical notes (with consent).⁶ Where an interpreter is required, trained and experienced interpreters (ideally face to face) should be used.⁶

Shared decision-making

Shared decision-making is a collaborative process through which clinicians support patients, where there are preference-sensitive decisions, to evaluate their clinical options and expectations to achieve informed choices.⁷ It has been associated with improved health outcomes and satisfaction.⁷ However, a survey of 473 parents showed that fewer than half of them felt involved in the decision-making process after stillbirth.⁷ Respectfully involving and supporting patients in choices about analgesia and anaesthesia will enable them to retain/regain some sense of control and help parents reach decision that they will be less likely to regret in the long term.

Future pregnancies

Becoming pregnant after pregnancy/baby loss can be a stressful and anxious time for parents. Anaesthetists caring for bereaved parents in subsequent pregnancies should be acquainted with the parents' history to enable sensitive responses to concerns or anxieties that the parents may express. Let parents know that you are aware of their previous experience and give them the opportunity to talk about their pregnancy or baby loss if they would like. Most bereaved parents report feeling comforted when other people talk about or acknowledge their baby who died. Inclusion of fathers, partners, family or support individuals is vital, and avoid making assumptions about how either parent might be feeling at any particular stage.

Impact on staff

Providing support to parents at the time of their baby's death can be emotionally challenging and distressing. Reasons for this will be individual and may relate to personal experience, empathy for the patient or anxiety caused by wanting to ‘get it right’ for bereaved parents.⁶ There is increasing recognition of the impact of work-related traumatic events, hopefully paving the way for easier access to confidential professional help and a reduction in the stigma around accessing it. Critically, an open and supportive workplace culture with opportunities for staff to share experiences and vulnerabilities both formally and informally (e.g. multidisciplinary debriefs with focus on staff's well-being, case reviews and ‘coffee room conversations’) is of huge value. In addition to organisational support structures, individual healthcare workers need to be attentive to their own needs and pay attention to good self-care with exercise, rest, hydration and nutrition.

Healthcare personnel may also be faced with managing their own emotions after their own experience(s) of loss; anaesthetists who have experienced pregnancy or baby loss may require an enhanced package of compassionate support and a customised return-to-work process, led by the individual.

Conclusions

Communicating sensitively and empathetically with bereaved parents is a skill that requires training and development. With training, staff can feel more assured of the care that they provide and make caring for families experiencing pregnancy and baby loss a rewarding experience. Care is further enhanced by the use of evidence-based tools and integrated care pathways. Dissemination of bereavement care packages and communication training is vital to reduce preventable harm and ensure that bereaved parents receive the compassionate and high-quality care they so need and deserve.

For further information on baby loss training and guidance on self-care and well-being for professionals, please refer to the following resources: SANDS (stillbirth and neonatal death charity; https://www.sands.org.uk), Abigail's footsteps (https://www.abigailsfootsteps.co.uk) and Beyond Bea Charity (www.beyondbea.co.uk).

Declaration of interests

PA is the founder and principal at Bereavement Training International, which provides training sessions for Abigail's Footsteps, referenced in this article as a resource for further support and training. GC declares no conflict of interest.

Biographies

Gemma Crossingham BSc (Hons) FRCA MSc is a consultant obstetric anaesthetist at University Hospitals Plymouth NHS Trust. Other than obstetrics, her major professional interests include anaesthesia for emergency surgery, learning from excellence and promotion of a positive and civil workplace culture.

Paula Abramson is a psychotherapist and training facilitator, specialising in providing bereavement support to families and training for professionals following the death of a baby or child. Paula worked for more than 10 yrs in the NHS, and has since designed and delivered bereavement training workshops for healthcare professionals whose work includes supporting families when a baby or child dies. In 2019, Paula launched her own baby and infant loss training consultancy, Bereavement Training International (www.bereavementtraining.com).

Matrix codes: 1H02, 2B04, 3B00