What are we willing to pay for the quality of death we want?
Since March, 9,006 Canadians have died from COVID-19, the vast majority of them people over the age of 80 with underlying comorbidities and living in long-term care homes.
The impact that COVID-19 has had on the population in long-term care is tragic. But what about the care needs of the other 20,000 Canadians who die from non-COVID-related causes each month? In Ontario alone, we see nearly 9,000 deaths per month.
Research on the preference for place of death shows that most people with a terminal illness prefer to die at home or in other home-like environments such as hospices or palliative care units, where they are comfortable and surrounded by their loved ones.
However, a significant concern for patients and their families is the lack of healthcare services and supports at home. Patients in their final months of life need around-the-clock care. Sadly, only one in five Ontarians receive end-of-life care through our publicly funded home-care program in their last year of life. The pandemic has further limited access through staffing shortages, cancellation of visits and a lack of personal protective equipment.
How can we, as a society, improve access to this essential care both now and in a post-pandemic period? Stated bluntly, what is the cost to support a good death?
Through the provincial home-care program, Ontarians have access to care provided by registered nurses, personal support workers and other healthcare professionals trained in palliative and end-of-life care. Patients can receive up to 24-hour nursing support at home in their final weeks of life. Not surprisingly, this results in better patient outcomes. Patients who receive end-of-life home-care spend fewer days in hospital in their last three months of life and are three times more likely to die at home.
A recent study of 50,000 deceased older adults in Ontario found the cost to enable people to die at home by providing end-of-life care is an additional $995 per person over the last three months of life, less than the average cost for one day in a hospital.
So, why aren’t all Ontarians at the end of life receiving home-care? Why is the bulk of end-of-life care in Ontario still provided in hospitals?
The simple answer is that there needs to be more investment in the provincial home-care program. Providing care at home requires the full-time support of family members and loved ones. The potential income loss family caregivers absorb to enable someone to die at home or in a hospice cannot be overlooked. Unpaid caregivers play a critical role in a person’s end-of-life experience. Caring for a loved one at home simultaneously may be a rewarding and challenging experience for family members.
While financial supports such as the Compassionate Care Benefits through Employment Insurance are available for family caregivers in Canada, the application process is complicated and lengthy and needs to be made more accessible. As well, considerations should be extended to non-family members in a patient’s circle of care.
While we continue to battle the spread of COVID-19 in our long-term care homes, let’s not forget the end-of-life care needs of those in their final days of life in our community. These services need to be scaled up to their pre-pandemic rates and further expanded to meet these growing needs.
With a relatively minor investment from the government, we can provide more compassionate and better care for Ontarians at the end of life.
Amy T. Hsu, PhD, is an Investigator at Bruyère Research Institute, faculty in the Department of Family Medicine at the University of Ottawa, and holds the University of Ottawa Brain and Mind-Bruyère Research Institute Chair in Primary Health Care Dementia Research.