Choosing a place of end-of-life care for your child

End-of-life care may be provided in a hospital, hospice or in the family home with the support of home care programs. Care may also go back and forth between these settings depending on the needs (or wants) of the child and the family. Each situation is unique, and the wishes of all involved need to be considered and continuously re-evaluated.

Some families wish to be at home with their child for as long as possible but want to return to the hospital or hospice to have the support of the staff when death is approaching. The decision about the location for care will depend on each family situation, the support available and what feels most right at any given time to the family.

Caring for a child at home works well for some families, but it can be difficult if you don’t have additional supportive care services available.

Caring for your child at home can be overwhelming at first. You may have to learn new skills and may worry about how to deal with symptoms that could occur.

At home, day-to-day care often falls to a parent. Siblings play an important role too, although this may not include physical care. Extended family members and friends can also provide relief for the family caring for a child.

Caregiving can be an intensely emotional and physically draining experience. The experience affects how the family functions and their usual roles and routines.

Specially trained palliative home care teams are available in many areas and can help the family. They can provide information on practical matters, such as how to give basic care to your child, what equipment to get, how to meet your child’s nutritional needs and how to plan ahead.

There are many things to consider if you choose to care for your child at home. If you are considering caring for your child at home, find out what services are available in your community and what might be covered. Find out more from home care nursing services, the palliative care team, your child’s family doctor, your child’s oncologist and hospice about what support each may provide at home. If you choose to take your child home, have a detailed written plan for their care. Your healthcare team can create a plan for you.

Some things to consider and to check with the healthcare team include:

• Is there adequate space to care for your child? Does your child share a bedroom? Is there space for any equipment needed to care for your child?
• Who do I call in case of emergency?
• Can I change my mind if caring for my child at home becomes too much?
• Can pain be managed at home? Is there access to drugs and equipment and who will manage your child’s pain at home?
• Is there help available for daily physical care?
• What healthcare services are available? Day to day? 24 hour? In case of emergency?
• Is there support from your child’s healthcare team at home?
• Is there practical help from other family members or friends?
• Is there emotional support?
• How will this affect other children living at home?