Supporting bereaved parents: practical steps in providing compassionate perinatal and neonatal end-of-life care – A North American perspective

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Summary

Providing compassionate bereavement support challenges care-givers in perinatal medicine. A practical and consistent approach tailored to individual families may increase the care-giver's ability to relieve parental grief. This approach includes: (1) clear and consistent communication compassionately delivered; (2) shared decision-making; (3) physical and emotional support; and (4) follow-up medical, psychological and social care. Challenges to providing comprehensive end-of-life care include care-giver comfort, consistency of care, cultural and legal barriers, and lack of adequate training.

Introduction

Care-givers face major challenges in providing effective and compassionate care at times of perinatal or neonatal death. These include determining what is in the best interest of both the mother and fetus or newborn, balancing risks and benefits of treatments, and supporting parents' grief.

The cause, timing and events surrounding the delivery and death of their fetus or newborn modify parents' grief.1 Current grief models emphasize the benefit in parents building and preserving a relationship with the child.2 In the busy, technological world of the resuscitation room and the neonatal intensive care unit (NICU), fostering this parent–infant relationship requires care-giver sensitivity and special skills. We are not aware of randomized controlled trial (RCT) interventions on perinatal bereavement. We aim in this review to provide a practical perspective on supporting bereaved parents through a perinatal or neonatal death.

Section snippets

Practical interventions for supporting bereaved parents

Grief is a normal response to loss; it is both universal and individual. Mothers experience sadness, irritability, guilt, or somatic symptoms which may persist for up to 2 years.3 Fathers experience similar grief responses but at lower levels and with less expressed guilt.4 Difficulty in ‘coping’ is associated with poor levels of support and history of mental health problems.5 In addition, parents may experience marital dissatisfaction, with an increased incidence of relationship break-up.6

Conclusion

In conclusion, perinatal loss is not a single event, but rather it encompasses the parents' entire journey from the emotional loss of a ‘new life’, the physical separation from their child at the time of death, the social loss of their roles as parents, and their cognitive loss of self-esteem. Care-givers require a unique skill set to provide effective perinatal bereavement care.

Practice points

Supporting bereaved parents requires:

  • clear and compassionate communication skills

  • appropriately

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    This work was supported by a research grant from Physicians' Services Incorporated Foundation, Ontario, Canada; awarded to C. Williams and H. Kirpalani.

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