Having a child in the intensive care unit is never easy. It is particularly difficult when your child is very sick or has suffered a severe injury and the physicians are not sure if he or she will survive. There are also times when providing medical support to your child may actually cause him or her pain and suffering. When that happens, continuing with painful or uncomfortable procedures may not be what is best for your child. Because the health care providers deeply care about your child, they will always try to do what is in his or her best interest, even if it means making difficult or heartwrenching decisions. This brochure will help you understand some of the decisions you may face surrounding these issues. We hope it will help you make choices that you feel are best for your child.

Intensive Care Vocabulary
Your physician may talk to you about different types of treatment. Some treatments are aggressive. This means that the health care provider will try to treat your child with strong medicines or medical machinery. Other treatments focus on keeping children comfortable and eliminating any pain. Some words and phrases that your physician may use might be new to you. The following list may help you understand your child’s options.

Palliative Care or End-of-life Care: In general, this is care given to a very sick or injured child when medical technology
cannot make him or her better. Often, the focus of the care is to keep the child comfortable and to ensure that he or she does not feel any pain, discomfort, or anxiety.

Intubation: This is when the physician places a breathing tube through a child’s nose or mouth directly into the child’s lungs. This is done to help the child breathe. The tube may be attached to a ventilator (also known as a respirator or mechanical ventilation), which can breathe for the child or help the child to breathe.

Electrocardioversion or Defibrillation: This is when the physician uses an electrical current, or electrical pulse, to change the heart’s rhythm. People sometimes refer to this as “jump-starting the heart,” but this is not accurate. The electricity does not cause the heart to start if it has stopped; it actually temporarily quiets the heart so that it can restart in a more organized way.

CPR: This term stands for Cardio-Pulmonary Resuscitation. During CPR the physician or nurse pushes on the child’s chest to “squeeze” the heart so that the blood will be pumped around the body. This action is known as a chest compression. CPR may also include intubation. Additionally, children are often given medicines to help make their heart beats stronger or faster (these medications are called cardiotonic drugs, vasoactive drugs, inotropes, or pressors). CPR may also include electrocardioversion or defibrillation.

DNR: This term stands for Do-Not-Resuscitate. Resuscitation includes different medical procedures including, but not limited to, those listed above. Your child’s physician may talk to you about limiting aggressive treatment if it is not beneficial. Chest compressions and electrical shocks may be painful, and occasionally it is better for a child not to undergo these procedures.

Limitation of Care: This is a term sometimes used to include any limitations on aggressive procedures. Limitations may include DNR or DNI (Do-Not-Intubate) orders. Other limitations may be set on the use of antibiotics, the administration of tube feeds (which is when a feeding tube is placed into a child’s stomach through the nose or mouth for the purpose of giving liquid nutrition), the use of IV fluids, or any other medical procedure.

Withdrawal of Support: When health care providers “withdraw support,” they remove machines, medications, or fluids that are prolonging a child’s life, but not making him or her better. The health care provider will always continue to provide pain medication and ensure that a child is comfortable. When there is no chance that a child’s health will improve, or the
eatment is painful or uncomfortable, the parents and physicians may feel it is best to allow the child to die peacefully and comfortably rather than prolong the dying process.

Brain Death: There are 2 different kinds of death recognized by law. The most common way of death is the cessation of the heart beat. Death also occurs when the brain completely stops working. This is called brain death. If a person is declared brain dead, the heart may continue to beat, but the person cannot breathe without machines, feel pain, or have any thoughts or feelings. When this happens, the machines will be turned off. This is not “withdrawal of support” because the child has already died.

Discussing Your Child's Care
It is important to discuss your child’s care with the physician, even when it may be difficult. This does not mean that you have to make a decision about how to treat your child or that your child’s physician will make a decision. But it is important to keep the lines of communication open at all times.

If the physician feels that your child’s illness or injuries are so serious that he or she may not survive, or if the treatment for your child may be painful or uncomfortable and will not cure him or her, your physician may wish to discuss end-of-life care for your child. These conversations are difficult; however, the child’s best interest is always the priority. Sometimes parents will initiate these conversations because they do not want to see the child uncomfortable or in pain. A parent should always feel comfortable discussing this topic with the child’s physician.

When talking about end-of-life care it is important to have good support, such as a relative or friend, with you. Some families choose to have a member of their religious affiliation with them. A social worker or your child’s nurse can give you support as well. They have helped many families in similar situations and can help you think of questions to ask the physician.

Something to consider is whether or not your child’s brothers and sisters should be involved with end-of-life discussions. This is different for every family. Young children may not understand what is being discussed or may be frightened by the conversations. Additionally, siblings sometimes feel guilty or even jealous when a child is in the ICU. The social worker or child life specialist may be able to help you decide how to involve your other children.

Remembering a Child Who Has Died
The loss of a child is one of the most profound and life-altering experiences that a person will ever face. It is important for you to know that you are not alone. Together with your family and friends, our team of physicians, nurses, social workers, and child life experts are available to you at any time—day or night. We want to be certain that all of your questions are answered, and that you feel secure with your decisions.

After a child dies, we encourage families to spend as much time at the bedside as needed before leaving the hospital. Everyone should have a chance to say goodbye. Parents are welcome to help the nurse clean and bathe their child, or dress him or her in a favorite outfit. Holding and rocking your child may also provide comfort. Some families wish to leave before their child dies. This is a personal decision that should be made based upon what is best for the family.

Many parents find that having pictures taken of their child in their last hours is reassuring. Handprints and footprints can be made for you, and many parents find these keepsakes reassuring. A lock of hair, your child’s favorite stuffed animal, a
picture he or she painted, or writing a letter to your child may all be reassuring to you.

The social worker can discuss funeral arrangements. A funeral home will need to be selected and the parent or guardian will be asked to sign a Release of Remains either at the hospital or at the mortuary. A social worker, your pastor, or relatives and friends may be helpful to you. The mortuary will discuss the many options and your family’s wishes.

Throughout the hospitalization, most of your energy is focused on your child. Parents sometimes forget to eat, and may get little or no sleep. Emotions run high and there may be conflicts between family members. When a child dies, the focus is lost. Your role as a parent is altered forever, and nothing can take that pain away. Making decisions, walking, talking, eating—things that we take for granted—suddenly become difficult. While there may be others that need taking care of, you must remember to take care of yourself. Communication with your loved ones is essential.

Getting back into life’s routines may seem impossible, but there are many resources to help. Some parents find certain books helpful in their grief. Others find support groups or web-based bulletin boards helpful. You are not alone.

The Gift of Life
The death of a child is devastating. Some parents, however, find that helping other families with ill children is comforting.

Often organs and tissues from children who die can be donated to other children, or sometimes to adults, who suffer from certain illnesses that can be cured by organ transplantation. The gift of a kidney, liver, or heart may save the life of someone else. All vital organs may be donated. Many tissues, like corneas, bone, and skin can also be donated to help others.

The decision to donate is completely up to you. Some families choose to donate, while others prefer not to donate. There are many options with organ donation and you may discuss them all with you child’s physician or a representative from your local organ donation service.

Resources and References
Books for Parents

Attig T. How We Grieve: Relearning the World. New York, NY: Oxford University Press; 1996.
Chilstrom C. Andrew. You Died Too Soon: A Family Experience of Grieving and Living Again. Minneapolis, MN: Augsburg Fortress Publishers; 1993.

Finkbeiner A. After the Death of a Child: Living With Loss Through the Years. Baltimore, MD: Johns Hopkins University Press; 1998.

Gold L. Sacred Wound: Healing From the Death of a Child. Fireword Publishing; 2000.
Green R. The Nicholas Effect: A Boy's Gift to the World. Sebastopol, CA: Oreilly & Associates; 1999.
Heavilin MW. Roses in December: Finding Strength Within Grief. Eugene, OR: Harvest House Publishers; 1998.

Henderson C. Losing Malcom: A Mother's Journey Through Grief. Jackson, MS: University Press of Mississippi; 2003.

Hickman MW. Healing After Loss: Daily Meditations for Working Through Grief. New York, NY: Avon Books, Inc; 1994.

Johnson J. Dear Parents: Letters to Bereaved Parents. Omaha, NE: Centering Corporation; 1989.
Kushner H, Mehren E. After the Darkest Hour the Sun Will Shine Again: A Parent's Guide to Coping With the Loss of a Child. New York, NY: Fireside Books; 1997.

McCracken A, Semel M. A Broken Heart Still Beats: When Your Child Dies. Center City, MN: Hazelden Publishing & Educational Services; 1998.

Miller S, Ober D. Finding Hope When a Child Dies: What Other Cultures Can Teach Us. New York, NY: Fireside Books; 1999.

Rosenblatt PC. Help Your Marriage Survive the Death of a Child. Philadelphia, PA: Temple University Press; 2000.

Schomaker MZ. Lifeline: How One Night Changed Five Lives. Far Hills, NJ: New Horizon Press Publishers; 1995.

Taylor DH. Heaven Couldn't Wait. Danbury, CT: Rutledge Books; 2000.
Wolfelt AD. Healing a Parent’s Grieving Heart: 100 Practical Ideas After Your Child Dies. Fort Collins, CO: Companion Press; 2002.

Books to help parents talk to their kids about death
Fitzgerald H. Grieving Child: A Parent’s Guide. New York, NY: Fireside Books; 1992.
Grollman EA. Talking About Death: A Dialogue Between Parent and Child. Boston, MA: Beacon Press; 1990.

Heegaard M. When Something Terrible Happens: Children Can Learn to Cope with Grief. Chapmanville, WV: Woodland Press; 1991.

Kroen WC, Espeland P. Helping Children Cope With the Loss of a Loved One: A Guide for Grownups. Minneapolis, MN: Free Spirit Publishing; 1996.

Mundy M. Sad Isn’t Bad: A Good Grief Guidebook for Kids Dealing with Loss. St. Meinrad, IN: Abbey Press; 1998.

Schuurman D. Helping Children Cope With Death. Portland, OR: The Dougy Center for Grieving Children; 1998.

Silverman J. Help Me Say Goodbye: Activities for Helping Kids Cope When a Special Person Dies. Minneapolis, MN: Fairview Press; 1999.

Silverman PR. Never Too Young to Know: Death in Children's Lives. New York, NY: Oxford University Press; 1999.

Children's Books About Death
Brown LK, Brown M. When Dinosaurs Die: A Guide to Understanding Death. Boston, MA: Little, Brown and Company; 1996.
Buscaglia L. The Fall of Freddie the Leaf. Thorofare, NJ: Slack Inc; 1982.
Mellonie B, Robert Ingpen. Lifetimes: The Beautiful Way to Explain Death to Children. New York, NY: Bantam Books; 1983.
Rofes EE. The Kids Book about Death and Dying. Boston, MA: Little, Brown and Company; 1985.

Books on death for teens
DiGiulio R, Kranz R. Straight Talk About Death and Dying. New York, NY: Facts on File; 1995.
Dower L. I Will Remember You: What to Do When Someone You Love Dies. A Guidebook Through Grief for Teens. New York, NY: Scholastic Inc; 2001.
Grollman EA. Straight Talk About Death for Teenagers: How to Cope With Losing Someone You Love. Boston, MA: Beacon Press; 1993.

Online support groups and website references

Resources

www.sccm.org
www.icu-usa.com
www.cityofhope.org

National self-help clearinghouse

  (212) 642-2944

  www.selfhelpweb.org

  www.mayoclinic.com

Partnership for caring-America's voices for the dying

  1-800-989-9455

  www.partnershipforcaring.org

  www.dyingwell.org

Hospice link: 1-800-331-1620
www.griefnet.org
www.compassionatefriends.org
www.dougy.org
www.grievingchild.org
www.groww.com
www.babysteps.com
www.centering.org
www.cancercare.org
www.bereavedfamilies.net
www.lossofachild.com
www.growthhouse.org/death

© 2004 SCCM
Developed by the Patient and Family Support Committee of the Society of Critical Care Medicine