Things to consider when preparing for end of life at home

Because care focused on comfort can usually be achieved in any setting, many families choose to stay at home as their child's end of life nears. Being at home during this time allows all members of the family to be together in a setting that is familiar and most comfortable for all. With proper planning and supports facilitated by the palliative care team, families are able to remain at home for as long as it feels like the right place to be, including up to the moment of a child's last breath.

Things To Consider When Preparing For End Of Life At Home
Things to consider when preparing for end of life at home

Home care resources

Talk with your health care team about home care services in your region.

  • Are there services that provide palliative home care (example: nursing agencies, family physicians)?
  • Is your home in a very remote or rural setting? 

Home environment

End-of-life care requires an appropriate environment to be successful. Think about the physical space in your home.

  • Is there enough room in the home for equipment?
  • Is there enough room for healthcare providers to do their work?
  • Are important areas of the home accessible (e.g. front door, bathroom)?
  • Is there a peaceful, clean, and therapeutic space available for your child (example: not too hot, not too cold, not too noisy, no problems with animals or pests)
  • Do you have places to organize and safely store medications, devices, and medical records?

Other people in the home

End-of-life care in the home affects everyone who lives in that home, and affects each person differently. There are many reasons why the decision to have your child receive end-of-life care at home may feel ‘right’ or ‘wrong’ to each different person.  

Adults and mature children may be able to interpret their feelings on the subject and express their opinions. Younger children may not be mature enough to voice an opinion, thus the decision falls to their guardians. 

Some families think that end-of-life care in the home will be harmful or traumatic to young children. However, most experts have found the opposite is often true. Most siblings benefit from being involved as caregivers, assistant caregivers, playmates, or simply by observing what is happening. When they are involved in end-of-life care, siblings have an opportunity to process the events and their grief in real time. If they are “protected” from death, only to learn about it all at once, at a later time, they may feel anxious and lose trust in the adults around them. Each child and family is unique. It’s important to discuss this decision openly and work through it together with your family. 

Communication and Documentation

Talk with your healthcare team to develop a home care plan that is proactive, collaborative, and clear. Talk about which treatments or responses best fit different situations and meet your family’s goals of care. Write out your wishes in an Advance Care Plan and Symptom Management Plan. Health care providers who are experienced in home care and end-of-life care can help prepare you and your health care network to deliver this care. They will help you arrange all the medications, equipment, and information you need for the plan to be successful. 

You may also need to get an official document that states that your child’s death is an expected death and that no one is expected to attempt to resuscitate them. These documents vary by region. Your team will tell you what you need. 

Time of death

End-of-life care at home does not have to mean death at home. Many families wish to be at home for as long as possible, but not at the time of death. Your healthcare providers can provide supports to help you stay at home. When home no longer feels like the right location or when you think death is getting near, they will help you and your child move to a more suitable place in hospice or hospital.  

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I was initially afraid of Xavier dying at home