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
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
This is achieved by:
• respecting a nd honoring the meanings the family attaches
to the concept of family
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
of childhood, as20required
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,
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:
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
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
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
(school attendance, family outings)
Guideline III – Access
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
2 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,
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.
Gu ideline 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
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.
principles of program by maintaining the family's right to confidentiality and
• 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
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
• assisting members of the
team, including the family, to acknowledge their own limitations
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.