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 his or her 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 needed 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 his or her 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 comprised 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
Read the PDF, End-of-Life Care, for more information about hospice, care decisions at end-of-life, and the process of dying.
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 his or her 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 his or her feelings whether those feelings are anger, fear, sadness or acceptance
- Download of order The Leukemia & Lymphoma Society’s free booklets
- Coping with Childhood Leukemia and Lymphoma
- End of Life Care
- Hospice Care
- Children and End of Life