Currently, over 260,000 Canadians die every year, and it is estimated that by 2036, there will be 3.3 million Canadians over the age of 80. With these staggering statistics, it is our responsibility to ensure that all people have access to hospice palliative care, and that they die with dignity, free of pain, surrounded by their loved ones, in the setting of their choice. This unfortunately, often does not reflect the current reality in Canada.
Although Canadians die in many settings, we know that the availability of high quality
end-of-life care in these settings varies widely. Currently, only 16-30% of Canadians have access to hospice palliative care.
So where do Canadians die? It is essential to understand the places in which Canadians are dying before we can improve the access to and quality of hospice palliative care.
- Acute Care. According to Statistics Canada, most Canadians are dying in acute care hospital settings . The risk with this setting, in particular, is that many acute care facilities have limited hospice palliative care staff and resources. Too many people who are dying end up in emergency departments during the last months and weeks of life, an indicator of poor quality end-of-life care. This system is currently failing too many people and families.
- Long Term Care. Although some Long Term Care facilities (also referred to as nursing homes in some areas) are moving forward with hospice palliative care training for staff, as it stands, the system is still not ideal, and many LTC patients also end up visiting the emergency room in the last weeks of life. Currently, having a formalized palliative care program is not mandatory under the LTC act. Almost 50% of residents in LTC Homes are dying in the facility each year, yet there is still no formal palliative care for most of them. Although a recent study showed that an increased awareness that early palliative care interventions result in a better death and a more integrated grieving process, we still have a long way to go to make this mandatory in all LTC facilities.
- 3. At home. Although most Canadians would prefer to die at home amongst their loved ones, a lack of funding of home care programs affects the need for trained volunteers and family caregivers. Many who wish to care for a loved one at home need to take into account the heavy strain placed on the family caregiver, and the high cost of home care. According to the 2012 report: Seniors in need, caregivers in distress: What are the home care priorities for seniors in Canada? released by the Health Council of Canada, home care costs in the last six months of life are roughly double what are required for all other home care recipients, and not all of these costs are covered by Medicare or private insurance plans. A recent Ontario study showed that people with life-limiting illnesses who receive care at home early and receive more hours of care at home, are less likely to visit emergency rooms in the last weeks of life.
- Residential Hospice. A residential hospice is also seen as an ideal setting for many Canadians, as the environment often reflects the home, and the dedicated staff are well trained in end-of-life care. Many residential hospices also offer bereavement and respite care for families in need. Canadians living in remote and rural areas, or those living with disabilities, have severely limited access to formal residential hospices, and many find themselves having to travel far from home in order to find a hospice bed.
- In shelters/on the street. While most Canadians will die in one of the above settings of care, there is still a marginalized homeless population who die in shelters or on the streets, with little care. There are now a small number of hospice programs for the homeless in Canada: units located in shelters that allow people who are homeless to die in an environment where they feel at home. Shelter staff receive extensive training and provide round-the-clock care, supported by medical and nursing students who serve internships at the hospice.
Current end-of-life care research increasingly suggests that Canadians prefer to die at home or in their home communities (e.g. in local LTC facilities or hospices) instead of in a hospital setting. People near end-of-life should receive the care and support they need wherever they are in Canada and no matter their income. If they do need hospital care at some point, their transitions should be seamless. Patients should be able to move freely and easily between settings of care in order to ensure that they have access to the best hospice palliative care possible.
In a community-integrated system of hospice palliative care, high quality care would be available in all settings, and all Canadians and their families would have the information, resources and support to move from one setting to another based on their needs and preferences. Canadians and their families should have a choice and a say in the services they receive, when they receive them, and how they receive them. In an integrated model, Canadians would have not only the access, but the choice to die in whichever setting of care is most comfortable to them.
To ensure that all Canadians have the opportunity to have a good death, we must first understand where individuals die, and the changes that need to be made across these settings. Through the development of a community-integrated model of hospice palliative care we can work together to create caring communities that support people and their families to live well until the end of life.
The Canadian Hospice Palliative Care Association under the guidance of the Quality End-of-life Care Coalition of Canada has started work on the development of a framework for community-integrated hospice palliative care models. To learn more about the Initiative or to get involved, please go to www.hpcintegration.ca.