The death of a child 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 often has lifelong repercussions. It may 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.
How You Can Help 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 be with their child.
Prepare parents (and siblings) for what they will see beforehand. Explain the machines, tubes, needles, and other equipment. Try to avoid complicated terminology and don’t “talk down” to families.
If parents want to be at the bedside during procedures, explain what is being done as their child is treated.
Be Honest
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 forth, and what those numbers mean.
Express Emotions
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 expression of feelings (and modeling) 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 in denial as this is a form of emotional protection that will disappear when an individual is ready. Everyone has a different timetable of acceptance.
Be Sensitive to Parents’ Needs
Refer to the child by name—even after death. Reassure families that everything possible is being done. They don’t automatically know or assume this. Continue to reassure them that no measure will be left untried in the attempt to save their child’s life.
Recognize that sometimes there is a need to repeat the same explanation or information several different times. Parents under stress may absorb only 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 by denying them this opportunity. Treat each parent equally when providing and breaking news.
How You Can Help Parents After Their Child Has Died
Allow the parents as much time as they need to be with their child (individually and alone, if they wish) after death. This time is vital in the healing process.
Take pictures of newborns who die and put them in the infants’ charts in case parents want them in future weeks or months (sometimes, a baby dies before the mother is discharged from the hospital or has even seen her baby). National organizations now exist that network volunteer professional photographers who will come to hospitals to preserve precious memories of the baby who has died. These photographers donate time and materials to provide professional portraits of the baby (and family) without charge. 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 to express the simple words “I’m sorry.”
Don’t “hit and run.” If you must break sad news, try not to rush away immediately. When you inform parents their child has died, tell them what steps to take next. The shock and disbelief they feel may cause them to be confused, and they will need and appreciate your direction and guidance at this stressful time.
Make sure every family has the opportunity to discuss their child's options for organ and tissue donation. Many parents find donation to be a way to help make sense of their loss and a way to prevent the losss of a child for another family. Every hospital has a local organ recovery agency that can be a resource for you and the family with whom you are working. Reassure the parents that their child's body will be treated with respect and dignity.
If possible, attend the visitation or funeral. It means more than you can imagine. Families will truly appreciate your showing of care.
When a Sudden Death Occurs
If your only contact with parents is in an emergency room, be sure to allow parents plenty of time to absorb what has happened. Many parents want detailed information about the circumstances surrounding the 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 surface later.
How You Can Help Bereaved Families
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?)
• Anger/hostility
• Change in social patterns (isolation, inability to perform daily living tasks, vulnerability to physical Illness)
Understand that parents do not wish to hear rationalizations about their child’s death. Never tell a parent such things as “Your child would just have been a burden to you” or “She just would have suffered if she had lived.”
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.
Anger with the hospital or doctors and nurses is not always misplaced. Be open to examining, and discussing with the parents, decisions made and procedures performed in regard to treatment of the child.
Drugs can interfere with the normal expression of grief. Don’t be in a hurry to offer medication. Those who are sad are often unnecessarily medicated for depression after a loved one dies.
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.
©2008-2012 The Compassionate Friends, USA - All rights reserved. These materials are protected by U.S. copyright and are provided here for personal use only. Reproduction for mass distribution or for use on any website is prohibited.
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The current printing of this brochure was sponsored
in loving memory of
Paige Gibson
who wanted to help families.
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TCF brochures may be purchased at a nominal cost through The Compassionate Friends by calling 877-969-0010 or by going to the Resource Section of The Compassionate Friends national website. You can sponsor a brochure printing through our Brochure Program.