For Parents: Important Decisions to Be Made in the Dying Process

There are many important decisions to be made when a child is diagnosed with a terminal illness, including the following:

  • Right to refuse treatment. The child and family may have the right to refuse certain kinds treatment. Often, options for treatment are offered that may extend the child's life, but not provide a cure. The quality of life should be considered as well as the possibility of extending it.

  • Decision to die in the home versus hospital setting. Many families want their loved ones to die at home in their natural and most comfortable setting. Others do not feel they can emotionally handle the death in their home. Siblings may or may not influence this decision. Include all family members in this important decision. Not all decisions have to be made at once. In some cases, families think they want to be at home and then find the hospital to be more comfortable. Whereas, some families choose to be in the hospital and then find the child and themselves are more comfortable at home. Time and circumstances can help to make these decisions. Ask as many questions as possible to obtain the information needed to make the best decision for your family.

  • Advance directives, if age appropriate (18 or older). Adults, 18 years of age or older, can prepare an advance directive. Advance directives are documents that are looked to only if a person loses capacity to make decisions or suffers an injury or disease that renders them unable to communicate their wishes. Persons under age 18 may prepare an advance directive. However, by law (in most circumstances), parents or health care providers are not required to honor it.

  • Do not resuscitate (DNR) order. A do not resuscitate (DNR) order is a formal request by a person or a person's family to not take extreme measures to save his or her life. A DNR order is usually reserved for a person near death or with a terminal illness that, even if resuscitated, would not have a high quality of life or a long period before death would occur despite resuscitative efforts. DNR orders can specify how much intervention is desired prior to death (i.e., no use of cardiac drugs, no oxygen, no chest compressions, etc.). These need to be discussed and written by a physician. A DNR is also needed for home and in the event that emergency medical services are involved.

  • Autopsy decisions. An autopsy is an examination of the organs and/or tissues of the body after death. An autopsy is often used to determine the cause of death, but may also be done to research the fatal disease for future diagnosis, treatment, and prevention strategies. The decision to have an autopsy is a very personal choice and should be decided upon when the family is ready. Often an autopsy may help the family with closure and may help other children with a similar illness. In a child with a rare disease or cancer, or a condition which has a genetic cause, an autopsy can provide important information for other family members, or for parents who may decide to have additional children. If genetic testing has not already been done, or is not available at the time, DNA banking may provide an option of testing in the future.

  • Organ donation, if possible. Laws governing organ donation vary slightly from state to state. Your health care provider will be able to inform you of these options.

  • Funeral arrangements. The arrangement for a child's funeral is a situation for which no parent is prepared. For many parents, this is the first funeral they have attended and the first time they will have made funeral arrangements. Sometimes, parents are eager to rush the process because they are so stunned and upset. Families should not rush their decisions about what arrangements they want for their child. Parents need to have some time to determine what they want for their child before going to the funeral home, so that they are not making these decisions about the services during a time of great stress.

    It is important to take the time to ask questions of the funeral director to understand all of the options for planning the service. Involving other family members in the planning, such as siblings and grandparents, can make the service more meaningful for everyone. Clergy and religious communities can also provide support and resources as families prepare memorial or funeral arrangements. Memorial gifts to specific organizations, causes, or funds are one way to acknowledge what a family wants and needs to honor their child's life.

  • Palliative and hospice care. Palliative care is care aimed at comfort versus cure and treatment. Hospice is a type of palliative care that provides services to improve the quality of life for the family and child, stressing peace, comfort, and dignity.

The process of making the decisions for a child can be overwhelming for many parents. Time for anticipatory grieving should be provided when the child is diagnosed with a terminal illness. It is important to ask questions, delegate responsibilities to other family members when necessary, and to discuss the decisions to be made with the child, if appropriate.