End-of-life care for children and teens

Awareness and discussion of end-of-life issues is an important aspect of care for any serious illness and helps improve quality of life. Talk to your child’s healthcare team about treatment goals and any concerns you have related to prognosis, treatment outcomes, and end-of-life care. 

Although treatments for children with cancer have improved, some children do die of their disease or complications related to treatment. Children nearing the end of life have specific needs and concerns that their parents will have to consider.  

Thinking about your child’s potential future need for medical care and discussing end-of-life preferences may be painful, difficult, or uncomfortable. You may worry that discussing end of life undermines hope for improvement and recovery. However, end-of-life planning is about taking steps to live as well as possible every day.  

Turn to the members of your child’s healthcare team as well as the members of the hospice team, for support and guidance for you, your child, and your family.   

Choosing to stop treatment  

At some point, you may need to consider stopping treatment or stopping aggressive treatment for your child’s disease. This can be a difficult choice to make. It may be time to think about stopping treatment when: 

• Your child has exhausted multiple treatment options without improvement or with continued disease progression
• You child’s quality of life has declined drastically without hope for improvement
• Your child is too sick to continue treatment safely
• Your child says that they no longer want to seek treatment and understands the implications of this choice 

You and your co-parent or co-caregiver will be making decisions regarding your child’s future care. People who can be helpful and may be included in discussions include: 

• Your child
• Members of the healthcare team
• Other close family members
• A spiritual leader 

Discussing death with children 

Children deserve to know if they are nearing death. This knowledge allows children to ask questions, make requests, say goodbye, and prepare for death in a way that is comfortable and meaningful for them just as it would be for adults. 

Your child's age, maturity, and experiences with death influence their understanding of death and dying. You may find it helpful to ask your child what he or she understands about death so you can correct any understandings.  

Hospice 

Hospice embodies a philosophy that delivers compassionate care to people, including children, who are approaching the end of their lives and provides emotional and physical support to them and their loved ones.  

Hospice offers medical care that focuses on maintaining and improving quality of life for someone whose disease or condition is unlikely to be cured. An interdisciplinary hospice team provides medical care, pain control, and emotional and spiritual support that is tailored to the individual needs of each patient and their family. The hospice philosophy also encompasses the belief that every person has the right to die with dignity and without pain, and that families should receive the help and support they need to participate in the process. 

By providing care that makes your child as comfortable as possible and improves quality of life, hospice care can free up emotional and mental space so that your child can live out their days in a way that is meaningful.  

Most hospice programs enable the patient to stay at home. However, hospice care can also be provided at a freestanding hospice care facility or in a hospital setting. The hospice team is usually composed of hospice doctors, nurses, social workers, home health aides, volunteers, and chaplains or other pastoral counselors. Some of the services provided by hospice include: 

• Pain management
• Emotional and spiritual support
• Family coaching and sibling support
• Provision of drugs and medical supplies for comfort care
• Home health aide placement and supervision 

Your child may be eligible for hospice: 

• If he or she has a life expectancy of 6 months or less
• If he or she stops receiving curative treatment 

Making the most of the time left with your child 

Hospice care is typically provided in a comfortable, private space whether at home or in a medical facility. This means that your child will have the opportunity to spend more quality time with close family members and friends. During this time your child may want to: 

• See or speak to family members and friends
• Share fond memories and look at photographs or home videos
• Watch favorite films or listen to favorite music
• Write messages to family members and friends
• Give away possessions such as favorite toys or books 

Even if your child hasn’t developed language skills, physical touch such as holding your child or rubbing their back can be a great source of comfort for you and your child. Other ways you can help your child include: 

• Letting your child play in safe, age-appropriate ways. Even terminally ill children want to play and benefit from doing so.
• Continuing to set limits within your normal parenting style. Without limits or structure, your child may feel more out of control.
• Allowing your child to express their feelings whether those feelings are anger, fear, sadness, or acceptance 

 Bereavement 

Losing a child is possibly the most difficult thing a parent can experience. Grief can affect each person emotionally, physically, cognitively, and behaviorally. Many people express grief in an outward way; for example, by crying or experiencing a lack of energy, or having trouble sleeping. Others, on the surface, may not seem to be grieving. Instead, these people process grief internally. Their grief may go unrecognized and unacknowledged.  

Be aware that grief is personal and specific to the person. Try not to make judgments about how you, your co-parent, co-caregiver, or others process the loss of a child. The manner and timing of your approach to your loss and how you work through your grief depends on you as an individual. Grief is not bound by time, but eventually, the intensity of normal grieving does become more manageable. 

Siblings and grief 

Siblings are sometimes called the “forgotten grievers.” After the death of a child, the parents are likely to be the main focus of attention; however, siblings need comfort and guidance too during this time.  

Children may not be able to fully comprehend the nature of death until they’re about 10 years old. However, children sense separation and experience grief at a very young age. Children’s grief is different from that of adults. The ways in which children experience and express grief depends on their developmental level. 

Seeking support 

Sometimes, a person may become stuck at some point in the grief process or may express grief in an unhealthy way. If you find yourself, your co-parent, co-caregiver, or children unable to return to daily life or find enjoyment, seek the services of a grief counselor or professional therapist. 

Blood Cancer United’s Information Specialists are highly trained oncology social workers and nurses who are always here to help you with information, support and referrals as you meet the challenges of end-of-life. Call our toll-free number at (800) 955-4572 to speak with an information specialist. 

Financial assistance

• Social Security death benefits provides a one-time, lump-sum death payment of $255 to the eligible surviving spouse or child. A funeral director can usually assist in making the claim.
• Check government assistance for a funeral by state.
• You may also consider asking family and friends to make contributions to the funeral costs.
• Some life insurance policies or supplemental policies help cover funeral expenses.
• Local churches or religious organizations may have funds set aside to cover funeral costs for low-income families.

Financial assistance after the death of a child

• Children’s Burial Assistance
• Final Farewell

More Resources for funeral planning

• Blood Cancer United Palliative Care, Hospice, and End-of-Life Resources List
• Federal Trade Commission: Shopping for Funeral Services
• Funeral Consumers Alliance
• National Funeral Directors Association
• Remembering a Life (from the National Funeral Directors Association)

Online community  

Join the Grief and Loss of a Loved One group on Blood Cancer United Community. This group is for individuals who would like to discuss any aspect of the grieving process, at any point in the cancer treatment process and share feelings about loss, identity transitions, and relationship changes. If you are not already a member, you will need to create an account.