Making Difficult Decisions

Understanding the road ahead

It can be hard for families to know the “best” choice in care and treatment for their child. But your care team can help you understand:

• The current standard of care for your child’s illness
• What your care team considers a reasonable goal of care
• Treatment and care options 
• Your child’s prognosis and what the course of illness might look like

Every child is different. Treatment for illness works differently in every body. Some important questions to ask the care team include:

• Is my child expected to get better?
• When will we know if the treatment is working?
• What can we do to provide comfort and quality of life?

Developing treatment goals

After learning about your child’s prognosis and treatment options, a next step is to develop treatment goals.

Goals may include:

• Curing the disease
• Extending the child’s life
• Keeping the child pain-free and comfortable
• Promoting quality of life

Some care goals may extend to the well-being of the family and others including:

• Knowing that everything possible is being done to care for the child
• Helping family members cope with the child’s illness
• Assisting other children who have the same disease

Discussing 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 about options and priorities can reduce stress and help in decision-making.

Including the child in decision-making

Decisions may involve difficult conversations with your child. During treatment, many things are out of the child’s control. It is important to provide children with chances to have a voice and contribute to decisions 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:

• Plan where, when, and how to have the conversation: Think about how your child prefers to communicate and process information.
• Consider who should give the information: Some children want to hear information directly from the care team or doctor, while others want their family caregivers to communicate information to them. Parents may want to share information with their child first and then let the child talk with the care team or doctor.
• Anticipate how your child may react: Consider how your child has reacted to difficult news in the past.
• Be honest: Children can often sense when adults are upset or keeping things from them even if they do not seem to be paying attention. When children know what to expect, they can cope better.
• Encourage questions: A child may not ask questions because they do not want to upset their parents or caregivers. But scenarios in your child’s mind may be scarier than the truth. Empower your child to ask questions. Be open to answer questions when they come up.
• Consider how much your child can handle: Children may not be able to process everything at once. Answer your child’s questions honestly. But give your child space to process news. Be clear and direct. But try not to overwhelm your child. Ask them how much they want to know at that moment. Plan for several discussions.
• Let your child know that emotions are OK: It can be scary for children to see their parents cry or be sad. Help your child to understand that you may be upset at times. Emotions are normal and expressing them is good for mental and physical health. This may encourage children to be open about their own feelings.
• Be prepared for difficult questions: No matter how hard it is, try to give an honest answer. But before you answer, ask more questions such as: “That is a very important question (or observation). What makes you ask?” “What were you thinking that led you to ask that question?” “What do you think?” “Do you think that you are dying/are going to die? If so, what makes you think that?” “How do you feel about that?” By asking questions and giving your child a chance to express thoughts and feelings, you will know better how to respond.
• Admit when you do not know: Sometimes the honest answer is “I don’t know.” Share what you do know. Then ask a care team member. Children want to know that their questions are important. To prepare for these discussions, talk with trusted family members, friends, other caregivers, and faith leaders. Care team members can help prepare answers that best fit your child’s age, situation, and needs. You might ask a care team member to be in the room during these conversations.

Care team members who can help include palliative care, child life, psychology, social work, and spiritual care. Your nursing team may also give important insights on concerns and feelings that your child might try to hide from you.

Addressing family conflict

Sometimes, family members cannot agree on a decision. They may have different perspectives on goals of care or what to tell the child. Some conflict is normal, but it can be stressful. In these situations, families can develop an action plan to resolve conflict.

• Review the current treatment goals.
• Keep a list of questions and concerns.
• Meet with the care team to discuss options, share concerns, and ask questions. Your care team will include providers such as chaplains, psychologists, and social workers.
• Allow each family member to share thoughts and feelings without judgment or argument.
• Look for common ground.
• Identify ways to compromise.
• Focus on the present. Family conflicts may arise out of past disagreements or worry about “what ifs” of the future.
• Plan ahead. Planning can make sure decisions are not made in a rush or during times of crisis.
• Avoid arguments in front of children. This experience can be scary and may lead to them thinking they have done something wrong.

Not all family conflicts can be resolved. But it is important not to let disagreements interfere with your 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.

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