The death of a baby before, during or shortly after birth: Good practice from the parents' perspective
Introduction
‘Bereaved parents never forget the understanding, respect, and genuine warmth they received from caregivers, which can become as lasting and important as any other memories of their lost pregnancy or their baby's brief life.’1
The care that parents receive around the time of a loss has a huge impact on their perception and memories of what happened, on their ability to cope at the time, and on their long-term well-being. Good care cannot remove the pain and devastation that parents feel, but insensitivity and poor care can and do make things worse. There is much that doctors, midwives and nurses can do to ensure that the memories that parents take away with them are as positive as possible.
Everyone we came in contact with that night, the nurse, the registrar, the consultants, they were so fantastic. They took time to talk to me. And they really showed how upset they were as well. (Bereaved mother)
Section snippets
Parents value empathy and kindness
Parents value empathy and kindness as well as professional expertise. They remember those staff who sensitively acknowledge the enormity and the sadness of what has happened, even if those same staff – with all their experience – feel in their hearts that the outcome was inevitable, or even for the best. They value those staff who remember that their baby is a person and who respect and care for him or her as a precious individual who matters.
Offering this kind of empathetic support is
Parents value language that acknowledges their baby
The heightened emotions and stress that parents experience at a time of pregnancy and child-bearing loss often make them very sensitive to other people's language and non-verbal behaviour, especially when those people are ‘in authority’. Although it may be clinically correct to talk about the ‘products of conception’, the ‘embryo’ or the ‘fetus’, most parents talk about their ‘baby’ from the beginning of the pregnancy and are often upset and hurt by clinical terms that seem to belittle his or
Parents value staff who listen
Finding time to listen to parents is difficult for increasingly hard-pressed staff. It can also be tempting to do or say something rather than to listen. But parents value staff who:
- •
are prepared to listen when they want to talk about what they are going through or about what has happened;
- •
accept what they say without comparison or judgement;
- •
remain calm when they express strong feelings and avoid platitudes and empty reassurance;
- •
respond with empathy, acknowledging their feelings and expressing
Parents value staff who keep them informed
Good communication builds trust, and parents need to be able to trust the staff who are looking after them and their baby.3 The manner in which parents are given information is very important: parents are much more likely to believe information if they feel that the person who is giving it cares.4
It may be necessary to repeat information on several occasions; stress and anxiety affect people's ability to take in and remember what they are told. Whenever possible, parents should be offered an
Breaking bad news
Breaking bad news is difficult and stressful.5, 6, 7 Although breaking bad news well cannot reduce the pain that parents feel, breaking bad news badly is likely to increase both their immediate and their long-term distress. Statham et al.5 found that even when parents had been devastated by receiving bad news during pregnancy, if they felt that it had been given with warmth and affection and that they had been treated with respect and sensitivity, most had positive memories and were grateful to
Offering informed choices
It is never possible to guess what will be important or helpful to anyone who is experiencing pregnancy or child-bearing loss, but it is possible to offer informed choices and to ask. Many parents in these situations feel that they are caught up in a whirlwind over which they have little or no control. Even if they cannot change what is happening, understanding it and making – or participating in – decisions can be very helpful and may help them to feel that they are ‘proper’ parents.4
Whenever
Creating memories
Perinatal loss is unique in that it is the loss of someone very important who has already changed the lives of the parents in fundamental ways, but of whom there are few or no tangible memories and often no memories that can be shared with other people. If the baby miscarried or was stillborn, the parents have never seen their baby alive, and in early pregnancy loss there may be no body. At the same time, most parents feel a strong desire to cherish and remember their baby, and to preserve his
Communication between staff
The number of staff involved in the care of the mother or parents – and who should be informed – will vary depending on the type of loss and whether the baby dies before or after birth. However, the mother's GP or primary health-care team should always be informed about the loss within 24 hours,16 and a designated member of the hospital staff should be responsible for this. The information should be given by telephone, in most cases before discharge, and also as soon as possible by letter,
Parents who speak little or no English
Members of some minority ethnic groups, refugees and asylum seekers have a higher risk of pregnancy loss17 and are also less likely to speak English. Even those people who normally speak good English may find that distress and anxiety drastically affect their ability to understand what is said and to express themselves. Communication underpins all the aspects of good care discussed in this article; good care is not possible without communication. Staff caring for parents who do not speak fluent
Specific details of good practice for different situations
For more specific details of good practice in care for parents whose baby dies at any stage during pregnancy or during or after birth see Pregnancy Loss and the Death of a Baby: Guidelines for Professionals (3rd edition) by Judith Schott, Alix Henley and Nancy Kohner, published by Sands (the UK Stillbirth and Neonatal Death charity) in 2007.
References (17)
Giving sad and bad news
Lancet
(1993)- et al.
Parents' perspectives on decision making after antenatal diagnosis of congenital heart disease
J Obstet Gynecol Neonatal Nurs
(2004) - et al.
Is nondirectiveness possible within the context of antenatal screening and testing?
Soc Sci Med
(2002) Perinatal loss: a critique of current hospital practices
Clin Pediatr
(1992)The management of early pregnancy loss: clinical green top guideline No. 25
(2006)- et al.
Sharing decisions with patients: is the information good enough?
Br Med J
(1999) Life support decisions involving imperilled infants
J Perinat Neonatal Nurs
(2000)- et al.
When a baby has an abnormality: a study of parents' experience
(2001)
Cited by (52)
Palliative Care
2023, Avery's Diseases of the NewbornAn assessment of obstetric trainees’ experience in breaking bad news
2022, European Journal of Obstetrics and Gynecology and Reproductive BiologyStillbirth and perinatal care: Are professionals trained to address parents’ needs?
2018, MidwiferyCitation Excerpt :Good care cannot repair the loss and grief that parents feel, however an insensitive care and non-evidence-based approach can make things worse. There is much that professionals can do to ensure that the memories parents take away with them are as positive as possible (Henley and Schott, 2008). More than three-quarters of our respondents have never received any specific training on the care of women experiencing stillbirth or bereavement support.
Palliative Care
2018, Avery's Diseases of the Newborn: Tenth EditionBioethics in end-of-life decisions in neonatology: Unresolved issues
2017, Anales de PediatriaPalliative Care
2017, Avery's Diseases of the Newborn, Tenth Edition
- 1
Both authors are Advisors to Sands.