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:
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.