Emotional and psychological support at end of life

Summary of evidence

Eleven source guidelines provide guidance for the emotional and psychological support of the child and the whānau (family/families). The Starship Advance Care Plan¹² enables documentation of psychological, social, cultural and spiritual support.

Of the 11 source guidelines, three provide perinatal-specific advice^3,4,9 that largely addresses the support of grief. Perinatal-specific information is presented separately.

Principles

At a child’s end of life, the emotional and psychological issues for the child, parents and whānau are individual, complex and far-reaching^4,5,7.

At the child’s end of life, issues for parents may include: coping with bad news; new roles and responsibilities; maintenance of everyday life; explaining to and supporting siblings; explaining to extended whānau; supporting partner; financial implications of not working; taking care of the child; recognising distressing symptoms and signs of end of life; and allowing multiple professionals into the home⁴.

At end of life, the child may experience: distressing symptoms; worry and guilt; feeling abnormal; and emotional concerns⁴.

At the child’s end of life, siblings may experience: jealousy, guilt and resentment; their own health concerns; and responsibility for the care of the child and parents⁴.

Health providers should be aware of existing issues and coping strategies of the child and whānau, who include siblings and grandparents^3,4,5,7.

Existing situations within whānau include: distress and crises that are emotional and psychological; relationship difficulties; and mental health problems^4,8. Children with learning or communication difficulties may experience specific emotional and psychological problems⁸.

The child or whānau may require appropriate support or psychological intervention to help with coping and to build resilience^5,8.

Excellent communication and listening strategies are required^2,4

Key practice recommendations

Develop an accurate understanding of whānau and the messages that they attempt to communicate; and ensure that whānau understand the messages that the clinical team is trying to communicate^2,4,8,9.

Ensure that parents are empowered as key partners and decision-makers for the child by listening to whānau's needs and offering information, advice and encouragement^2,7.

Build a trusting relationship with the child by showing respect and gaining an understanding of their world and their perspectives about illness and death². Give whānau sufficient time to talk when they are ready⁴.

Regularly discuss emotional and psychological wellbeing with the child and whānau, especially at times of change. At end of life, time of change include: deterioration in clinical condition; change in personal circumstances; changes in schooling or employment; and chances in clinical care⁸.

Ask whānau about existing support networks^2,10.

Enable whānau to choose hospital supporters, who may include nurses, clergy, other parents and domestic staff ^4,5.

Support whānau to spend quality time with the dying child. Encourage them to hold, play, read, play favourite music and, if possible, facilitate the last wishes of the child¹¹.

Encourage whānau to assemble memories, such as clothes, toys, letters, photos, poems, recordings, favourite music. The child may wish to assemble these for whānau¹¹.

Know what emotional and psychological support services are available^7,10.

Where it is required, refer to emotional or psychological support services that may include social work, psychological or psychiatry services.^2,5,8,10

Emotional and psychological support in the perinatal context

The death of a baby is a very painful time for parents^3,7,9. Neonatal staff must develop constructive rapport with parents^7,9.

The support needs of whānau are likely to be different before and after infant death⁷.

Parents who have a surviving twin or triplet may be caring for the other child and may need specific bereavement support⁷.

Neonatal staff should know what supports are available to parents⁷. These services and individuals should be skilled in working in the neonatal area, especially if there is a surviving sibling⁷.

Parents should be provided with information regarding financial support⁷.

Parents should be informed about available support, but the uptake of support should be their decision⁷.

Neonatal staff may find it emotionally difficult when a baby dies and require support³. Staff should receive training in sensitive communication with parents. They should have access to a clinical psychologist and providers of spiritual support. After an infant death, they should be offered a facilitated debriefing⁷ that aims to reduce distress and compassion fatigue and helps to build job satisfaction³.