Home and community are two fundamental aspects of the human experience. It is not surprising therefore, that when you are planning the end of your child’s life, home and community is an important topic. However, when your home and community are far away from a major care centre, you may face extra challenges in planning end-of-life care. 

Planning end-of-life care in rural or remote locations requires a similar information gathering process as it would in any home. You may wish to first review Planning end-of-life care at home for a detailed discussion on this topic. Factors to consider include:

• What is the expected course of my child’s condition? Does it make sense to plan end-of-life care?
• What are the goals of care? Can we meet these goals in a rural/remote location?
• What care resources are available in my region? Are they able to provide the necessary support/treatments for my child?
• What care environments are available (examples: hospice, hospital)? Are they suitable for my child?

If, with this information, planning end-of-life in a rural or remote location makes sense for you and your family, consider taking the additional steps noted below.

Identify key contacts

Identify primary individuals in the community and at your child’s specialist centre who will oversee communication and guide your child’s care. Find out who is available and when. Find out who is available after hours, on weekends, and holidays and how to contact them. It’s always a good idea to identify a “quarterback”, or the person you should call first, when a question or problem arises.

Try telecommunication

There are now lots of ways that people can communicate across large distances. Ask if your child’s specialist centre offers telehealth services to connect key members of your team with your local community. Schedule a videoconference to make sure the technology works and is reliable before waiting for a crisis to happen.

Gather extra medications, equipment, and supplies

Plan ahead in case you have trouble getting the medications, equipment, and supplies you need because of distance, weather, or availability. It may also help to connect with the nearest pharmacy to be sure they have all of the needed medications in stock if your home supplies run out.

Get extra training

There may be times when members of your medical team are not available, particularly in person. Ask your healthcare team to train you or other family members in skills you could use in case of an emergency. Training may include learning how to give comfort medications or how to use medical equipment.

Make sure you have a clear back-up plan with instructions for difficult situations. This may also include instructions for how to give pain or sedative medications (ideally this should be done with phone support from a medical professional), and when to call Emergency Medical Services (9-1-1).

It may be valuable to give advance warning to the local emergency services including police, firefighters, and paramedics. When calling 9-1-1, tell the communications officer that your child is receiving palliative care at home. If and when any of these services come to your home, be sure to share your documentation regarding your child's advanced care plan to help ensure that your goals of care are followed.

Read more

• Choosing a location for your child's end-of-life care

Resources

• Considerations for a home death - Canadian Virtual Hospice
• Preparing for the end - SickKids