Making Difficult Decisions

Every decision about a child’s medical care is important. But some decisions are more challenging than others. Families face difficult decisions throughout the care journey including whether to:

• Move away from home for treatment
• Enroll in a clinical trial
• Have procedures or treatments that pose long-term health risks
• Discontinue treatment
• Consider a do-not-resuscitate order (DNR) or advance directive

During the care journey, families 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.

Understanding the road ahead

When your child is facing a lifethreatening illness, there are many unknowns. It can be hard for families to know the “best” choice in care and treatment. Your care team will help you understand:

• The current standard of care for your child’s specific illness
• Treatment and care options given current health and past treatments
• Your child’s prognosis and what the course of illness might look like

Every child is different. Understanding your child’s prognosis and treatment options informs many of the most difficult decisions during the care journey. Often, the care team will not know exactly when or how the child will respond to treatment. Some important questions to ask include:

• Is my child expected to get better?
• What do you see as the primary goal of care at this time?
• When will we know whether treatment is working?
• What can we do to promote comfort and quality of life?

Establishing treatment goals

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:

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

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

• Knowing everything possible was done to care for your child
• Helping your family cope with your child’s illness
• Assisting other children with the same disease

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.

Including your child in making decisions 

Decisions may involve difficult conversations with your child. During treatment, many things are out of your 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:

• Plan where, when, and how to have the conversation. Think about how your child prefers to communicate and process information.
• Consider who should deliver information. Some children want to hear information directly from the care team or doctor, while others want their parents to communicate information to them. Parents may want to share information with their child and then let the child have a conversation 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 are 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 it is too emotional for the parents. However, scenarios in the child’s mind can often be scarier than the truth. Empower your child to ask questions, and be open to answer questions any time they come up.
• Consider how much your child can handle. Children may not be able to process all information at once. Answer questions as completely as possible, but give them space to digest news. Be clear and direct, but try not to overwhelm. Plan for repeated conversations.
• Acknowledge that emotions are OK. It can be scary for children to see their parents cry or be sad. Help your child understand that, while you may be upset at times, emotions are normal and expressing them is a good thing. This may encourage your child to be open about their own feelings.
• Be prepared for difficult questions. No matter how hard it is, try to give an honest answer. This will reaffirm trust and provide a sense of security. However, before providing an answer, ask more questions such as: “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 get a better sense of how to respond.
• Admit when you don’t know. There may be times when the honest answer is “I don’t know.” Provide the information that you do know, and then seek out the answer from a member of the care team or other resource. Children want assurance that their questions are important and will be more likely to communicate in the future.

In preparing for these conversations, ask for guidance. Family members, friends, other parents, and faith leaders can provide support and advice. Your care team can help prepare answers that best fit your child’s age, circumstance, and needs. You might ask a care team member to be in the room during these conversations.

Care team resources that can help 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.

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 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.

• Review the current treatment goals.
• Keep a list of questions and concerns.
• Meet with the care team to talk through options and ask questions.
• Give each family member an opportunity to share thoughts and feelings without judgement or argument.
• Look for common ground.
• Identify specific 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. Sometimes it helps to plan ahead so that decisions are not made in a rush or during times of crisis.

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.

Related Content