End of life is not an easy topic to think about let alone plan for. Understanding what palliative care is and what decisions you will face when planning for end of life is central to ensuring your needs and wants are met when you may no longer be able to make decisions for yourself. Over the next several months we’ll be sharing information and resources to help you make these decisions and to better prepare you and your loved ones. Our Talking Palliative Care blog series will focus on topics such as pain management, grief, hospice and palliative care considerations, dying well, financial planning, funeral planning and more. Special thanks to the Canadian Virtual Hospice for providing their expert guidance on this series.
We can all agree that when it comes to making end of life decisions, comfort is one of the most important considerations. Comfort can mean different things to everyone. Staying at home for as long as possible or until death may be preferred by some people while others may feel more comfortable in a facility. If you’re unsure of what will make you most comfortable here are some things to consider.
What’s available in your community
In Canada, we don’t have a federally regulated hospice palliative care program which means the availability of services can vary based on your physical location. Depending on where you live you may have access to home care or community services, dedicated hospice facilities or hospital services. Ask your healthcare team what resources are available where you live or use the Canadian Virtual Hospice Programs and Services locator.
In-home care may sound appealing for you if you feel more comfortable being in a familiar setting and having family close by. Ask your healthcare team if there are home care programs and community services that can be provided to help make at-home hospice possible. This can include coverage for the cost of medications or equipment, respite care and nursing visits.
A hospice, long-term care facility or hospital can provide palliative care to you and your family. A dedicated facility will provide access to nursing, personal support workers and doctors, medications and living arrangements. Some public facilities may have wait lists as the demand can outweigh the availability.
Funding for hospice palliative care services
Even though we have a publicly funded healthcare system in Canada, not all hospice services will be covered by your province or territory. Some may offer home care programs that will provide services at no cost. Not all equipment may be covered through these programs and families may be required to pay out of pocket for rentals.
Facility based care also varies by location. Provincially funded long-term care homes may be available or there may be residential hospices run on donations. Other hospices, however, may require fees for the care they provide. Any larger centers with hospitals that have dedicated palliative care units will be paid for by the province.
To help offset these costs you may be able to access additional coverage through private insurance benefits. If you haven’t already, you can also apply for benefits through the Government of Canada or Quebec. If you’re over the age of 65 you can access the regular Canada Pension Plan benefits or Quebec Pension Plan benefits. If you’re under the age of 65, you can also access benefits through the Canada Pension Plan Disability benefit or Quebec Pension Plan disability benefit.
Your family members may also apply to receive benefits to help offset the costs of providing care for a dying loved one. The Employment Insurance Compassionate Care Benefit gives temporary income support for caregivers of family members at the end of life. They may also have coverage through their private insurance, but they can apply for benefits through the Government of Canada too. Use our FinancialNavigator database to find more opportunities for income supplement.
Community and family caregiving support
When it comes to choosing between home care and facility care, the availability of family support is a key factor. Having a strong support network with people who are willing and available to be there to assist you is important when it comes to staying at home. The services provided through the public programs do not offer round the clock care at home. Doctors, nurses and personal support workers will come in on a scheduled basis, but the remaining care is left up to the family.
It is also important to think about safety in your home environment. When a person gets weak from advanced illness, their mobility can be impacted. Coming up with options for remaining safe is critical. This may include using equipment to help limit having to move (such as a commode) or having someone present to assist with safely getting from a chair into bed.
Finding additional community supports can assist your family with daily needs. There may be volunteers in your community who can provide support or respite care.
There are many things to think about when considering advanced illness. Finding what feels most comfortable to you and your family members can help relieve any fears or anxieties you may have about your care. Here are a few more resources from our partner, the Canadian Virtual Hospice to help you better understand your options: