With Children

It’s very important to talk with children honestly about illness and death. Children can sense when something’s wrong and may worry more if no one talks to them openly about it.

Explain to your son in simple terms what’s happening with his grandmother. Tell him that she won’t be getting better. Don’t be afraid to use the words "cancer," "death" and "dying." You can say that death means someone is no longer breathing, is not alive, can’t experience things in this world and is dead. Using the words “dead” and “died” is important. Other terms, such as "loss" or "in heaven" or "passed away" may confuse children. It’s not wise to say that eventually someone will go to sleep and not wake up. It can make children worry that this could happen to them, and they may become afraid to fall sleep.

Structure is important for young children, and helps them cope with stress. Try to maintain your son’s routine as closely as you can.

Often families don’t want children to be around someone who is dying. This leaves children with many unanswered questions and may lead to fears. It’s a good idea to take your son to visit his grandmother often if it’s possible. Continue to visit as the illness advances, as long as symptoms aren’t too distressing and your son can cope with what he sees. His grandmother may have her own thoughts about continuing your son’s visits. It may help her to talk about this while she still can make decisions. It also gives you assurance that you know what she wants.

Your son’s grandmother may have symptoms that you need to explain to your son. If she has pain, your son needs to know, so that he can act appropriately. For example, if she has pain in her back, it’s important that your son ask before climbing into her lap. If she can’t do certain things, such as walk long distances or get out of bed, it helps to explain this also.

Ask your son often how he’s feeling and if he has any questions about what’s happening. He needs to know he can talk about his feelings. Be aware that young children can have ideas that seem strange to adults. It helps to ask about these ideas and where they come from. Your son may be confused, as his thinking may be very concrete, and death is an abstract concept. This also may make it hard for your son to grasp the finality of death. Your son may need to hear the explanations repeatedly, for quite some time. When dealing with stress or new experiences some children may regress. For example, a child who has recently been toilet trained may need diapers again. Don’t be alarmed if such things happen; it may take time for these issues to be resolved.

You may find that with children, active treatment of the disease continues, even with the knowledge that there may not be a cure. The course of illness in children can be very hard to predict. Depending on the illness trajectory, the amount of involvement from a home care or palliative care perspective may be limited at times.

Rural health care professionals are often uncomfortable caring for a child who is dying, as this is not something that happens regularly. These feelings need to be acknowledged, and accessing the resources available to you is important. It is crucial to work closely with the specialty teams at the health care facility where the child has received treatment. There should also be a pediatric palliative care team that is accessible to you, no matter where you are in Canada. These pediatric palliative care teams can help provide support such as phone or telehealth consultation for the family and health care providers, and assist in care planning and symptom management in order to help keep children in their home communities.

Family-centred care

Family-centred care is an important approach for all members of the health care team to follow when caring for the dying child and the family. A child dying at home creates a challenging situation that affects parents, siblings and caregivers.

With a young child, the parents are usually very involved in his or her physical care. Children usually prefer to have the assistance of parents because they are familiar. However, parental involvement affects what a nurse or health care assistant might do. Discuss with the family effective techniques that the health care team could use to approach their child. Also involve the family in deciding what services are needed and how they should be implemented.

Keep in mind that the needs of the child can be lost in efforts to treat the illness, and it is important to remind everyone about what is best for the child. Children usually have a keen understanding of their illness and that things are not going well. Open and honest communication is crucial. Having an outlet for the child to express his or her emotions, feelings and fears may be helpful. The developmental stage of the child is an important consideration here (see age appropriate assessment below).

During this difficult time, parents are trying to maintain various roles and may need extra support. They may feel pulled in many directions with work, caring for other children, and trying to maintain normalcy. They may also be facing financial hardship. Alerting the family to the federal government’s compassionate care benefit may help ease the financial burden a child’s illness may bring. You may also want to investigate if there are other local or provincial resources that can assist the family.

Siblings are another key part of the family you must consider when a child is dying. The day-to-day life of siblings can suffer because of a child's illness; they may have strong feelings about the child dying in the home. Siblings may feel anger and jealousy, and can exhibit behavioural problems. They may also feel forgotten or unimportant as the ill child receives so much of their parents’ energy and time.

Being aware of siblings’ feelings is vital for health care professionals and requires a time commitment on their part. Ensuring that siblings have someone to talk to and are aware of what is happening in the home is crucial. Normalizing siblings’ lives as much as possible should be a goal of the health care team and family. However, at times, this may not be possible, and the help of extended family and friends will be necessary to care for siblings.

Families may have questions about siblings being present when the child is dying or sibling attendance and involvement at the funeral. Families should let siblings have the option of how much they would like to be a part of what is happening. Some children want to be very involved, and others do not. Developing creative ways to involve siblings that respect their individual personalities is often the best approach. During the illness of the child and during bereavement, siblings may find support groups helpful if they are available in your area.

Symptom management

As with an adult dying at home, management and anticipation of a child’s physical symptoms are crucial. Therefore, a health care team must have medications available before symptoms occur. Preparing the parents to deal with these symptoms is also important. Make sure you have a plan to address any “what-if” questions the parents may have.

Preparation of the health care team and the parents should happen before the child experiences these expected symptoms. In the midst of a crisis, decision making can be difficult. Initiating these discussions may by hard, but they will help make everyone involved (family and health care professionals) more at ease. Of course, you may need to adapt your pain management plan as the child’s illness progresses, so it is important to encourage open communication from the start.

The medications used to manage symptoms in children are the similar to those used in adults at the end-of-life. However, when medications are ordered for children they are based on the child’s weight. Therefore, if there are significant fluctuations in the child’s weight, you should take that into account when assessing or reordering medications.

Age-appropriate assessment

Age-appropriate assessment is an important component of managing the care of children. The developmental stage of the child will influence how you approach his or her assessment. Young children, who are not able to fully verbalize what they are feeling, require astute assessment.

Five-year-olds who have been ill for a long time will likely be able to verbalize that they have pain, where their pain is and how much it hurts. They will likely not be able to rate their pain on a numerical scale, so you will need to use other methods of pain assessment, such as pain scales that use faces instead of numbers to show the degree of hurt. Other activities, such as colouring on the outline of a body where pain occurs, may also help to you determine where a child experiences pain.

Children this age will also withdraw from play or activity if they are experiencing pain or have other symptoms such as nausea. So asking parents about the level of activity their child is engaged in will also be important. No matter the age of the child, parents are often the key informants regarding his or her general health status, behaviours and medication use.

Bereavement support

Recognizing the impact that caring for a dying child may have is important for the health care team. Frequent case reviews, informal and formal support, as well as a death review are beneficial for everyone involved.

The family can also benefit from bereavement follow-up and you should discuss and offer this service if resources allow.

Here are a number of resources that provide excellent information about caring for dying children:

• The Canadian Network of Palliative Care for Children (http://cnpcc.ca) has helpful information with links to many resources.
• The Rainbows Children’s Hospice in the UK offers a practical resource you might find helpful: Basic Symptom Control in Paediatric Palliative Care. These guidelines include suggestions for managing the common symptoms experienced by children at end-of-life.
  

Starting discussions about death with children can be very difficult, especially when children are quite young. This young mother is likely experiencing immense angst because of her disease and in addition to her own emotions, must also tell her children she is dying.

The best way to help this young mother is to guide her through initial and subsequent discussions with her children by focusing on some key considerations. Suggest that she set the stage for her discussions by limiting distractions. She might also choose a time of day when her children are more alert and attentive.

Suggest that she think about how she will describe her illness to her children in view of their ages. She should use the name of illness, state that she is very sick and briefly describe what is happening to her body. Likely the illness is not contagious, so she needs to assure her children that they will not get sick. She also needs to let them know that they did not cause the illness and that no one can do anything to make her feel better, not even her doctors.

Explanations should be brief, concrete, specific and simple. She should say that she will become sicker, will have less energy and will die from her disease. Using the words “death” and “dying” is important. Doing so will help her children understand that it is all right to use these words to describe what is happening.

Sometimes adults find having a support person with them helpful when talking with their children. This may provide emotional support or assistance in explaining the illness to the children. This mother may need someone who can help answer the children’s questions and who can take over if she finds the discussion too difficult. Encourage her to choose the right person: someone intuitive and well known to the children. She should discuss that she wants to approach the conversation openly and honestly, and that she will signal her support person if she needs help.

Emphasize the importance of informing her friends and family about her approach. Many people avoid talking about illness and death, especially around the person who is dying. If this mother starts the conversation and asks her friends and family to also be open and honest about her situation, this will likely make the experience much easier for her children. It also acknowledges that others will be involved in conversations with the children as time goes by.

This mother will need to consider the developmental level of her children when discussing her illness and death. Three- to six-year-olds have a limited understanding of body functions and the permanency of death. Children at that age also tend to be magical thinkers, have intense imaginations and may believe that their thoughts or actions have caused the illness. Young children are able to absorb and recognize the emotions of those around them, and probably have a sense that their world is changing.

These children are at very different stages in their comprehension, development and ability to concentrate. Three-year-old children are still developing language skills and may need her to explain some words. Three year olds have a very limited attention span, compared with a five year old. This mother likely can anticipate how her children react to news or stressors, and whether she should talk with them together, or spend time with each of them individually.

Three-to-six-year old children will process conversations over time, establishing their own pace for receiving and thinking about information. They will likely ask questions repeatedly and frequently as they try to make sense of a situation they may not understand. They will likely process what is happening through play and art. It would not be unusual for children of this age to speak about their mother dying while playing with other children.

If her children are in school or daycare, alerting the teachers and staff about the illness is also important. This will allow the school to report or address any issues or changes in behaviour that may arise. It will also help teachers and staff be more aware of her children’s interactions and observe how they are coping as her illness progresses.

As she becomes more ill, encourage her to have the children around her so they can be a part of the experience as much as possible. Emphasize that she needs to prepare them for the inevitable changes in her condition and ensure that someone can explain what is happening to her if she is unable to communicate. The children will likely adapt well if they are kept informed and are a part of the process as their mother dies.

Reference

Himelstein BP, Hilden JM, Morstadt Boldt A, Weissman D. Pediatric palliative care. NEJM. 2004;350:1752-1762.