Choosing a location for your child’s end-of-life care
The end of a child’s life is a precious and sacred time. These moments remain with family members, and many times with their health care providers, forever. One of the most important decisions that families may make is choosing a location for end-of-life care.
Hospital is always an option for end-of-life care. Hospitals can provide 24/7 access to expert healthcare providers, equipment, and medications that may be needed to help a child in their final moments. Options may include a specialized regional children’s hospital or a local community hospital.
“Our only options at that time were to bring him home or be in the hospital. There was no talk of hospice or anything like that. For us, we couldn't fathom bringing him home, with Ella being so young-- she was only three and a half. For us, we wanted to come into our home and remember all of the good things. And Keaton loved his nurses, so being in the hospital for him was not a scary thing. It was just not ideal for the family. They did the very best they could with the resources they had available.” – Danielle, mother of Keaton
A hospice is a place that specializes in end-of-life care and offers 24/7 access to care in a home-like environment. Some specialized hospices serve children and their families; others serve both adults and children. Some hospices are not comfortable or familiar with caring for children, and will only admit adult patients.
Home provides families with the comforts of being in their own environment but the availability of specialized healthcare providers at all times is limited in this setting, when compared with hospital or hospice. However, good end-of-life care can be accomplished at home with advanced planning and partnership between families, home care agencies, and healthcare teams.
” There was something about being at home that was good for all of us because everyone was more relaxed. We could enjoy the time even though we knew it was very limited.” Esther, mother of Elianna and Eli- Grace
- Things to consider when preparing for end of life at home
- Planning end-of-life care in rural or remote communities
Researchers have done surveys asking people where they would prefer to experience the end of their life or the end of the life of a family member. Home is often the number one answer. But home may not be the best environment for end-of-life care for every person in every situation. With the right planning and the right supports, death at home may be preferable to death elsewhere. Before you make a decision, here are some things to think about:
- Expected course of the condition
- Goals of care
- Home care resources
- Home environment
- Other people in the home
- Communication and documentation
- Time of death
Expected course of the condition
It is critically important to talk with your health care team about the expected course of your child’s condition. Find out what problems you and your family may face as end-of-life approaches. Ask:
- How does this condition cause a person to die (example: seizure, internal bleeding, decreased oxygen/increased carbon dioxide)?
- Is there an expected timeline (example: days to weeks, weeks to months)?
- What are the signs that death is getting close (example: repeated episodes of aspiration pneumonia, increased sleepiness, decreased blood cell counts)?
Goals of care
Talk with your healthcare team about your goals of care. When you think about your child’s health, the expected course of the condition, and the values that help guide your decision-making, what do you want most for your child? Which treatments are likely to help you achieve your goals? Which treatments are not?
If your goals of care include trying to prolong your child’s life with ongoing or new life-supporting interventions and technology, you may find that the hospital setting is a better location to meet these goals. If your goals of care are focused on making sure your child is comfortable and with the family as much as possible, you may want to plan for end-of-life care at home. Take your time in making decisions; these can be changed as your child's illness and care needs change.