WHEN A CHILD DIES:
A PARENT'S PERSPECTIVE FOR CAREGIVERS
There is little anyone can say or do to help ease the pain of losing a child.
It is a time no parent ever forgets, a time of unbearable anguish and sorrow. And yet,
experience has shown that what happens in the hospital while a child is dying can have
lifelong repercussions. It can affect the severity and length of parental grieving as
well as the ability of parents to resume a normal life.
The following suggestions were compiled by people whose children died in a hospital or other
health care setting. It contains their suggestions as to what was and was not helpful to them
in their interactions with caregivers.
WHAT YOU CAN DO FOR PARENTS WHEN THEIR CHILD IS DYING
Let parents "parent." They need to participate in the care of their sick child as much as possible
AND to be with their child.
Prepare parents (and siblings) for what they will see before they see it. Explain the machines,
tubes, needles and other equipment. Try to avoid complicated terminology without "talking down"
If parents really want to be at the bedside during procedures, let them see what you are doing with
their child. Let them lead in that decision.
Always tell the truth. Tell parents everything you know about their child's condition. Be honest
about what you don't know. Tell them the numbers – blood pressure, temperature, pulse, and so
Give parents permission to talk about their feelings, to be extremely tired, to cry. Cry with
them if you are truly sad. Don't hide your feelings to protect them. You are in a position of
authority and your permission (and modelling) gives their feelings validity. Some parents may
not be able to accept bad news and may cope by denying it. DO be patient with parents as denial
is a form of emotional protection which will disappear when an individual is ready. Everyone is
on a different timetable.
SENSITIVITY TO PARENTS' NEEDS
Refer to the child by name - especially after death. Reassure families that everything possible
is being done. They won't automatically know or assume that. Keep on reassuring them that no
measure will be left untried in the attempt to save their child's life.
Recognise that sometimes there is a need to repeat the same explanation or information several
different times. Parents under stress may only absorb a little of what you have explained. Allow
enough time for parents to ask questions.
Make every effort to arrange for parents to be with their child at the moment of death if
they wish to be. Please don't "protect" parents from this opportunity. Treat parents equally in
giving information and breaking news. Mothers need information and fathers need support, too.
WHAT YOU CAN DO FOR PARENTS AFTER THEIR CHILD HAS DIED
UNDERSTANDING GRIEF AND MOURNING
Allow parents as much time as they need to be with their child (alone if they wish) after death.
This time is vital in their healing process. In the case of a child who was hospitalised for some
time, there is often a vast amount of personal possessions to be packed up and taken home. Allow
the parents to do this for themselves if they wish, but do ensure that they are not left to find
their own way out of the hospital premises. If you cannot accompany them yourself, arrange for a
senior (and familiar) member of staff to escort them.
Take pictures of newborns who die and put them in the infant's file in case parents want them in
future weeks or months. (Sometimes, a baby dies before the mother is discharged from the hospital
or before she has seen her baby.) Taking a footprint or saving a lock of hair also may have special
meaning for parents. These things are tangible proof that their child lived.
SHOW PARENTS YOU CARE
Touching is our most basic form of comfort and communication. Don't hold back if you want to put
your hand on a parent's arm or your arm around a parent's shoulder, or if you want to say,
"I'm sorry." Don't "hit and run." If you must break sad news, try not to rush away immediately.
At the time of informing parents that their child has died, tell them what steps to take next.
They are in shock, disbelief, and will be confused and need direction and guidance. There is no
such thing as an "expected" death.
Most parents appreciate being asked about organ transplants. Sometimes, parents who aren't asked
feel left out or even insulted. However, parents also need reassurances that their child's body
will be treated with respect and dignity.
If possible, go to the funeral and/or visit the parents at home. It means more than you can
imagine. A brief letter written to the family expressing sympathy reassures them that their child
was not 'just another number' and that his/her death mattered very much. They will really appreciate
your showing you care.
If your only contact with parents is in an emergency room, be sure to allow them plenty of time
to absorb what has happened. Many parents want detailed information about the circumstances
surrounding me death. (Was she in pain? Did he say anything?)
Be available to answer questions and let family members know they can call you if more questions
WHAT YOU CAN DO TO UNDERSTAND
BEREAVEMENT AND TO HELP THE FAMILIES
OF CHILDREN WHO HAVE DIED
Learn about bereavement and how it affects family members. Symptoms of grief may include:
feelings of sadness and body distress (lump in throat, sleeplessness, loss of appetite, exhaustion).
preoccupation with the one who has died;
guilt/search for causality (How could I have
prevented this from happening?);
change in social patterns (isolation, inability to do daily living skills,vulnerability to
Understand that parents do not wish to hear rationalisations about their child's death. Never
tell a parent such things as: "Your child would have been a burden to you as he was", "She just
would have suffered if she had lived" or "It's for the best".
Talking - expressing shock, pain and grief – helps parents adjust to the death of their child.
Be available to listen, knowing that it will take years to adjust to what many people consider
the worst loss of all.
Not all anger with the hospital or doctors and nurses is displaced. Some of it may be, but some
is probably justified and may need to be examined.
Bereaved people know they need to have something to do, but they may be extraordinarily tired for
a long time, and whatever they do needs to have meaning and importance. Don't suggest "busy work"
as grief therapy.
WHAT YOU CAN DO FOR YOURSELF
Many caregivers have expressed feelings of failure, sadness and frustration when a child they
are caring for dies.
Be aware of your feelings and find a safe outlet for them. Your honesty and genuine expression of
emotion will allow you to be more sensitive to those in your care. Acknowledging these feelings
may also enhance your emotional well-being.
This brochure was funded by ITHUBA
COPYRIGHT 1996 The Compassionate Friends