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Every decision about a child’s care is important. But some decisions are more challenging than others. Families face difficult decisions throughout care including whether to:
During childhood cancer, parents have to balance many factors. They must consider what the care team recommends, what the child wants, how the family will be affected, and whether the course of action is consistent with their religious or moral beliefs.
There are many unknowns in the cancer journey. It can be hard for families to know the “best” choice in care and treatment. However, the care team will help families understand:
Every child is different. Understanding the child’s prognosis and treatment options informs many of the most difficult decisions during cancer. Often, the care team will not know exactly when or how the child will respond to treatment. Some important questions for parents to ask include:
Once there is an understanding of prognosis and how treatments and procedures will impact the child’s quality of life and chance of survival, a next step is to establish treatment goals. Goals of care may include:
Some goals may extend to the well-being of the family and others including:
Discussing and developing goals as a family can help in making difficult decisions. Goals may change over the course of treatment. Having regular conversations with the care team regarding options and the family’s priorities for care can reduce stress and help in decision making.
Decisions may involve difficult conversations with the child. During cancer, many things are out of the child’s control. It is important to provide children with opportunities to have a voice and contribute to the decisions that affect their lives in age- and medically-appropriate ways. Children who feel more power over their care may feel less anxious and be more likely to comply with treatment.
When preparing for difficult conversations with your child:
In preparing for these conversations, ask for guidance. Family members, friends, other parents, and faith leaders can provide support and advice. Members of the care team can help prepare answers that best fit the child’s age, circumstance, and needs. You might ask a care team member to be in the room during these conversations.
Care team resources to support parents in communicating with their child include palliative care, child life, psychology, social work, and spiritual care. Your nursing team may also provide important insights on children’s concerns and feelings that they might try to hide from parents.
Sometimes, family members cannot agree on a decision. They may have different perspectives on goals of care or what to tell the child. Some degree of conflict is normal, but it can be a great source of stress. In these situations, families can take steps to communicate more clearly and develop an action plan to resolve conflict.
Not all family conflicts can be resolved. But it important not to let disagreements interfere with the child’s comfort and well-being.
Stress, lack of sleep, differing opinions, and complex information make it hard to manage conflict and make decisions. It may help to seek counseling to help resolve issues and get support for decision making.
Reviewed: June 2018