When a Child is Dying (guidelines)

Guidelines for Loss Support of Dying Children & Their Families

BC Women and Childcare Program and Children's Hospice Guidelines

Grief begins when a family knows that their child’s health is seriously threatened. The words ‘anticipatory grief’ and ‘bereavement’ categorize the time prior to and after the child’s death. It is recognized that grief/loss support is necessary in the continuum of care and after the child dies. Interventions are guided by the family’s process as it changes and evolves.

Guideline I – Family-Centered Care

Each family whose child faces imminent death or has died should receive individualized,

family-centered grief support.

This is achieved by:

• respecting and honoring the meanings the family attaches to the concept of family

• respecting and honoring the meanings the family attaches to birth and death

• identifying the family’s needs, hopes and fears, their expectations and their coping skills

• applying knowledge of the physical, psychological, social, educational and spiritual development of childhood, as required

• recognizing the unique personal, religious and spiritual values and beliefs of the family.

Guideline II – Support of Grief Before the Death of the Child

Parents, siblings and the dying child can experience profound loss and stress during the child's dying process. Grief in siblings and the dying child presents itself in countless ways depending on age, family dynamics and coping skills, stage of growth and development, past experience with death, and the nature and context of the child's illness path and death.

Supporting the grief of the child, parents, siblings and other family members is accomplished by:

creating an environment in which the child and family feels it is safe to express, or not express, feelings that are often difficult to understand and not easily shared
in accordance with the child and family’s wishes and/or choices, openly acknowledging and discussing the child's imminent or actual death
helping families to maintain a sense of control and to utilize effective coping strategies by meeting their information needs on all aspects of death and dying
actively supporting families in discussing death and dying with the family’s other children
helping families plan funeral services, burials &/or other culturally appropriate rituals
referring families to appropriate community agencies and resources that provide loss support to parents, siblings, and members of the child's extended family and circle of friends
creating opportunities for families to experience quality of life while the child is dying (school attendance, family outings)

Guideline III – Access to Support

Families who experience the death of a child should have information and available resources

to support their losses.

Access means that:

parents have access to information about bereavement services in their own community
when required, a communication system is in place to facilitate a continuous flow of information among all members of the interdisciplinary team and the family from the time when they know something is wrong with the health of their child through to bereavement
families have access to specialized bereavement services such as trauma support, relationship counselling, spiritual and/or cultural issues in their own language, etc.
there is an opportunity to meet with the care team to clarify/summarize events surrounding the child’s death and details of bereavement follow-up. This is documented in the health record. For example, the chart should record the name of the person a family is to contact for the results of an autopsy on their child’s body and information about other test results.

Guideline IV – Interdisciplinary Model of Care

Each family who faces the potential or actual death of a child will be supported by an

interdisciplinary team. Collaborative decision-making and optimal functioning will be

facilitated by ethical, open, honest communication among the child, parents, health care

professionals, volunteers and other members of the child's community.

The interdisciplinary team will achieve this by:

on-going consultation with the family to develop, implement, evaluate and document a plan of grief support
ensuring consensus about the overall goals of care and the desirability of specific interventions as the child is dying and/or has died. This may include conflict resolution.
upholding principles of program by maintaining the family's right to confidentiality and privacy
providing ongoing educational, spiritual, psychological and emotional support appropriate to the needs and circumstances of the family and other members of the child’s community such as friends, school, community service providers, as appropriate.
supporting one another by creating a milieu in which each person's own spiritual and religious beliefs and insights related to grief and loss are respected
assisting members of the team, including the family, to acknowledge their own limitations and grief

If you or someone you know has had a child die, from any cause or at any age, please look into the wonderful organization called Compassionate Friends www.compassionatefriends.org (World wide organization dedicated to families who have lost a child). 600 chapters in 50 states. For friends and family who wish to support a grieving family as well. Web site in english and spanish. Find local chapter locations.