The term quality of life refers to how comfortable or satisfying a person’s life is. Your child may have a improved quality of life if they feel physically comfortable, happy, and can take part in activities they enjoy. Your child may have a reduced quality of life if they have lots of unpleasant life experiences, such as pain, sadness, or difficulty doing any of the activities they enjoy. When your child has a serious illness, the quality of life for the child and family can be affected in a negative way. But, when things are going well, the quality of the good times can feel extraordinary.

You and your healthcare providers may find it a useful practice to talk specifically about your child’s quality of life and how the illness affects the entire family. Healthcare providers may help you find ways to make the most of your child’s positive experiences and to reduce the number of negative experiences. Review these questions together:

Improved quality of life

• What does your child enjoy about their life? (spending time with family, pets, music, school, or hobbies)
• What makes it hard for your child to do the things they enjoy? (pain, time needed for medical treatments, lack of or too much equipment, places are not accessible, or unexpected/unpredictable admissions to hospital)
• What could the team or family do to improve the quality of your child’s life? (pet visit to hospital, sibling games night, granting “wishes”, camps, family vacations, or special events)

Reduced quality of life

• What causes your child to feel unhappy about their life? (can’t attend school, pain, sleep disturbance, irritability, grief, or fear)
• Are there specific things that happen that cause unhappiness? (physical changes, constipation, or feeling depressed)
• What could the team or family do to prevent, stop, or reduce unhappiness in your child’s life? (change of diet, adding physical therapies, adjusting treatment plans and medications)

Sometimes, the things that contribute to an improved quality of life change over time, but the experience of life overall can still be positive. For example, your child might not be able to attend school regularly but still feels happy because the teacher and students keep in touch in other ways. 

At other times changes may mean that your child feels unhappy about their quality of life. For example, if your child can’t attend school, they may feel sad, angry, or lonely. These feelings may lead to negative behavior or cause them to withdraw. 

One suggestion you may find helpful is to keep track of how your child’s quality of life changes over time and to talk with your healthcare team about how to resolved issues  together and to find solutions adapted to for your child's needs. If you are concerned about your child’s quality of life, you may find it helpful to connect with your local hospital’s pediatric palliative care team. The focus of their work is to try to support the best quality of life possible for children with serious illness and their families.  

Everyone makes decisions that cause a temporary decrease in quality of life, in order to achieve a better outcome. 

Examples of this include:  Studying hard, missing out on fun, to get good grades. Having surgery to remove an infected appendix to treat appendicitis and prevent the spread of the infection. Taking medicine with lots of unpleasant side effects to try to cure a disease.

When your child is seriously ill, you will make many  decisions that affect their quality of life. When the likely benefits of an action are greater than the associated risks, the choice is usually clear. But, sometimes the balance between risks and benefits is not clear. 

For some children, there may be a time when their condition and the treatments they are having cause suffering and a poor quality of life. If this happens to your child, it may be important to review your family’s goals of care and to talk with your healthcare team about how to best meet your goals. Decisions may include stopping or not starting treatments that are focused on helping your child live longer, but that might prolong suffering.  Your team may ask questions that seem personal or possibly unrelated to the discussion. They do this to get a clear understanding of what’s important to you and your child and to give you the best guidance, according to your family’s wishes and beliefs. 

There is no set of right answers. What is ‘right’ for one family may be different for another. No two children or families are exactly alike. Put in the same situation, different families may make very different decisions. This is okay. Each family brings a unique set of values to their situations. Your values can help guide the challenging decisions you make to protect your child’s quality of life. 

Try to take time to think about what you want for your child and family. Ask questions if you need more information and don't be afraid to repeat or rephrase a question if the answer is not clear or you don't understand it. It may help to talk with a counsellor, social worker, or someone on the palliative care team. They may be able to  help you sort through your feelings and goals for your child by providing an objective perspective. It can be helpful to include a counsellor, social worker, or palliative care specialist as a member of your healthcare team to help plan your child’s care. Paediatric palliative care providers are specialists in helping children who are seriously ill or dying to live their best quality of life. 

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• Advance care planning