Having a child with a terminal illness can be very emotional and overwhelming for the entire family. If the patient is hospitalized, the child life specialist will meet with each family to assess their needs. The child life specialist is specially trained to talk with the patients and/or siblings about death and dying using age and developmentally appropriate information and explanations and a variety of resources that help the patient and family through this very difficult time. The child life department can also provide hand prints and footprints and other remembrances for the family.
It is important for families facing a terminal illness or coping with recent loss to understand grief and death and how it impacts family members of all ages. People respond to loss in different ways, and no two people grieve the same way. Below are some different ways that people cope with loss and grief. Remember that it is normal for people to fluctuate between different stages as they grieve.
Stages of Grief
The grieving process varies from person to person in terms of the order in which one experiences the stages of grief, as well as the time it takes to advance the stages of grief. Grieving people do not necessarily progress in order. Some people may start with anger, while others may start with denial. The stages of grief are not necessarily a one-time experience. However, each step helps with the healing process. Grief is often divided into five stages:
- Denial — Denial is a stage where one can try to believe that the death has not occurred. One may feel numb, or in a state of shock. Denial is a protective emotion when a life event is too overwhelming to deal with all at once.
- Anger — Anger is a stage in which one is extremely upset that this tragedy has happened in his family. A good way to deal with bursts of anger is to exercise or participate in another type of physical activity. Talking with family and friends, other parents who have lost a child, and the hospital staff may also be helpful.
- Bargaining — Questioning God and asking “Why my child?” and “What did we do to deserve this?” are common questions in this stage. Guilt is a primary emotion during this stage. In this stage, grieving people might be searching for something that they did to contribute to the death. It is important to remember that there is nothing a grieving person or the child did that contributed to the death.
- Depression or sadness — This is a stage in which the death of a child can no longer be denied. Parents and siblings may feel a profound sense of sadness. This is normal. It may be accompanied by physical changes such as trouble sleeping or excessive sleeping, changes in appetite, or difficulty concentrating on simple daily activities. It is important to talk about depression with a health care professional such as a social worker or counselor, or meet with a support group to help cope with these feelings.
- Acceptance — Acceptance is the stage in which the grieving person has accepted death and the child’s death has been incorporated as part of daily life. The person has made an adjustment to the loss. This does not mean that the person will never feel other emotions, but usually families find that they are better able to manage their lives overall upon reaching this stage. Some resolution has taken place with the child’s death. This may include religious and cultural beliefs and practices.
Another Way to Look at Grief
1 According to Sanders, there are phases of grief with parental bereavement that are different from the traditional stages of grief:
- Shock — When parents lose a child, they can spend anywhere from weeks to years in this phase as they experience physical and emotional turmoil. However this phase can offer some defenses to the parents who are not mentally or emotionally ready to deal with the loss of their child.
- Awareness of loss — As parents mentally begin to deal with the loss of their child, they enter this phase. However, their emotional well-being may not be ready, so in this phase their emotions of guilt, sadness and anger can intensify.
- Conservation/withdrawal — As the emotional energy is released in phase two, parents in this phase start to retreat inward so their mind and emotions can recharge. Parents start to finally come to terms with their loss in this phase.
- Healing — After spending the much-needed time in phase three, the emotional and mental energy spent in the previous stages will be restored. This restoration of energy will allow the parent to begin the healing process and re-engage with others.
- Renewal — In this phase, the bereaved parent has started the healing process and is looking for things and ways to use the energy that was once dedicated to their child.
Having a child with a terminal illness can be very emotional and overwhelming for parents. If the patient is hospitalized, a child life specialist is specially trained to talk with patients and/or siblings about death/dying. Please contact your nurse if you need to speak with the child life specialist on the floor. The child life department can also provide hand prints/footprints of the patient whenever the family is comfortable with it being done.
Children grieve differently than adults. While each child will react differently to loss based on personality and age, these are a few common signs to help recognize grief:
- Separation anxiety — child becomes “clingy;” has trouble saying “goodbye” to loved one; fears leaving his or her parent, even for a short time.
- Regression — child reverts to bedwetting or thumb-sucking.
- Impatience — child becomes overly frustrated and angered during the course of daily activities.
- Withdrawal — child becomes unemotional, separates from his or her friends and family.
- Inattentive — child has trouble focusing in school.
- Protectiveness — child acts paternally towards his or her siblings.
If you should notice any of these signs with your child, this may be an opportunity to talk with your child about death. Books can also be a great tool/resource for kids to open the communication on this subject. Take a look at our list of books that will address this topic for different age groups.
Bereavement Support Groups
CHOC offers bereavement support groups for families who have lost a child. With compassion and understanding, we cover topics including finding purpose, identifying a support system, finding ways to remember and taking care of yourself. Learn more about our bereavement support groups.
Here are some tips for talking to kids about death/dying for different age groups:
2- to 3-year-olds
Children of this age will be unable to understand death. It is important for them to know that the dead are not merely sleeping because this can make them fearful of going to sleep and never coming back/waking up. They should be included in funeral rituals.
4- to 6-year-olds
Children of this age have a very small understanding of what death truly is and they can easily become confused. They may mistakenly think that death is contagious and fear that they and other family members are going to die soon. If this misconception should arise, talk to the child and explain that this is unlikely to happen. Simple, honest words and phrases should be used. They should be included in funeral rituals.
7- to 11-year-olds
Children in this age group have a grasp on death. You can talk to them concretely and answer questions directly and honestly. Look for confused thinking. Create times to talk about their feelings. Books on this topic can be helpful. They should be included in funeral plans and rituals.
12-year-olds and older
This age group understands death and will react to death much like adults. Yet, this age group does have a tendency to avoid their emotions and fears and they may refuse to learn to cope with the death. Allow and encourage ventilation of feelings to supportive adults or appropriate peer support groups. The lines of communication should be kept open and honest, and emotional contact should be made regularly.
Understanding the Concept of Death
For a child to accept death and have a complete understanding of death, there are four concepts that are common to this process. Developmental level plays an important role in how a child with truly grasp death. Not all children will understand death in the same way. A younger child might grasp that all things die (universality) but he/she may think that a person can come back to life (irreversibility). As children develop and mature cognitively, they are more able to process all the concepts of understanding death. (2)
This concept deals with understanding that death comes to all living things. It can be further subdivided into all inclusiveness, inevitability and unpredictability. For a person to fully understand death, they must recognize that all living things die (all inclusiveness); that no matter what steps a person takes they will die (inevitability); and one cannot truly know when death will happen (unpredictability).
Can a person come back to life after death? This is a common idea for a person trying to understand death. Until they recognize that once dead, a living thing cannot live again, they have not truly grasped the concept of irreversibility. Some younger children might think that the person is on vacation and will return later. For example, a child might think they can push the restart button like they do when their video game is going wrong and the person will come back.
This concept deals with the bodily and mental functions of a person stopping or ceasing to work after death. It deals with not only outside functions like breathing, but inside functions like thinking as well. A child must realize that in death the body stops working and can no longer do the things it used to.
What caused the person to die? Children must deal with understanding how the person died and what events or factors lead to their death. Younger children might think they caused the death because of their own mean thoughts or actions.
Information taken from:
1Sanders, Catherine. (1995). Grief of Children and Parents. Children Mourning Mourning Children. Hospice Foundation of America: Washington DC.
2Corr, Charles. Children’s Understandings of Death. Children Mourning Mourning Children. Hospice Foundation of America: Washington DC.