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 life-limiting illness. This is sometimes called a terminal illness. Decisions include:

• Right to refuse treatment. The child and family may have the right to refuse certain kinds of treatment. Often, choices for treatment are offered that may extend the child's life, but not provide a cure. Consider the child's quality of life 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 don't feel they can emotionally handle the death in their home. Siblings may 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. Some families choose to be in the hospital, but 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 get the information needed to make the best decision for your family.

• Advance directives, if age appropriate (18 or older). Adults who are 18 years old or older can prepare an advance directive. These are documents that are looked to only if a person loses capacity to make decisions or suffers an injury or disease that leaves them unable to communicate their wishes. Children younger than 18 may prepare an advance directive. But by law (in most cases), parents or healthcare 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 their life. A DNR order is usually reserved for a person near death or with a life-limiting illness that, even if resuscitated, would not have a high quality of life or a long period before death would happen even with resuscitative efforts. DNR orders can specify how much intervention is desired before death. For example, a person may choose not to have antibiotics or artificial feeding. These need to be discussed and written by a healthcare provider. A DNR is also needed for home. And in the event that emergency medical services are involved.

• Autopsy decisions. An autopsy is an exam of the organs and tissues of the body after death. It's often used to determine the cause of death. It 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. It should be decided 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 more children. If genetic testing has not already been done, or is not available at the time, DNA banking may provide a choice when testing in the future.

• Organ donation, if possible. Laws governing organ donation vary slightly from state to state. Your healthcare provider will be able to tell you of these choices.

• Funeral arrangements. Arranging 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 plans. Sometimes, parents are eager to rush the process because they are so stunned and upset. Families should not rush their decisions about what plans 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. They should not make these decisions about the services during a time of great stress.

  It's important to take the time to ask questions of the funeral director to understand all of the choices 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 make funeral plans. Memorial gifts to certain 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. It 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. Take time for anticipatory grieving when the child is diagnosed with a life-limiting illness. It's important to ask questions, delegate responsibilities to other family members when you can, and discuss the decisions to be made with the child, if appropriate.