The home death rate among cancer patients in the first year of the COVID-19 pandemic increased 8.3% at the same time as the provision of specialized palliative care (SPC) declined 5.3%, with a smaller increase in home deaths among socioeconomically deprived patients given no SPC, according to a Canadian study published yesterday in JAMA Network Open.
Researchers from Princess Margaret Cancer Centre in Toronto led the analysis of Ontario Cancer Registry data on 173,915 adults who died of cancer before the pandemic (March 16, 2015, to March 15, 2020) and in its first year (March 16, 2020, to March 15, 2021) by socioeconomic quintile (Q). Q1 indicated the least, Q3 indicated moderate, and Q5 indicated the most deprivation.
The average patient age was 72.1 years, 54.1% were men, 86.0% lived in an urban area, and 49.6% had stage 4 cancer.
"Place of death is an important determinant of the end-of-life experience of patients with cancer and their caregivers and is often used as a metric to assess the quality of end-of-life cancer care," the study authors wrote. "Prior to the COVID-19 pandemic, studies suggested that most patients with advanced cancer preferred to receive end-of-life care at home and to die at home."
Continuation of prepandemic trends
Of all patients, 83.7% died before the pandemic, and 16.3% died after it began. Over the entire study period, 54.5% died at home (including 2.0% who died in a long-term care facility), and 57.8% received SPC in their last 30 days of life.
Before the pandemic, Q5 patients were less likely than those in Q3 and Q1 to die at home (50.6% vs 53.9% vs 57.0%, respectively) and to receive SPC (55.0% vs 57.9% vs 63.6%, respectively). In March 2020, home deaths rose 8.3%, but this increase was less pronounced in Q5 (6.1%) than in Q1 (11.4%) and Q3 (10.0%).
The mechanisms for inequality are not well characterized but may include local availability of services, awareness of these services, and ability to advocate for them. … Similar to critical care, a plan for responding to future crises should be put into place for palliative care.
At the same time, the rate of SPC provision overall fell 5.3%, with no significant difference by quintile. Patients given SPC (vs no SPC) were more likely to die at home both before and amid the pandemic, but the immediate increase in home deaths was greater among those who received no SPC than those who received SPC (Q1, 17.5% vs 7.6%; Q3, 12.7% vs 9.0%). In Q5, the climb in home deaths was significant only for patients not given SPC (13.9% vs 1.2%).
Lack of resources, access, stability
"The surge in deaths at home at the onset of the pandemic may have been largely influenced by patients' efforts to avoid death in an inpatient setting," the authors wrote.
"While many patients chose to die at home during the pandemic, this choice may have been less viable for those with lower SES due to a lack of resources to pay for private personal support; less access to suitable, safe, and stable housing; less access to SPC services; and lack of a support network of informal caregivers with the capacity to take time off from work and advocate for the patient's needs," they added.
The drop in SPC delivery at the onset of the pandemic, which followed a decade of increasing SPC delivery in Ontario, may have been tied to delayed or absent SPC access due to COVID-19 restrictions, staffing shortages, or diversion of SPC staff to COVID-19 patient care.
Overall, the findings suggest that the COVID-19 pandemic exacerbated socioeconomic disparities in death at home and SPC delivery, the researchers said: "The mechanisms for inequality are not well characterized but may include local availability of services, awareness of these services, and ability to advocate for them. … Similar to critical care, a plan for responding to future crises should be put into place for palliative care."
Future research, they said, should focus on the mechanisms behind these disparities and on developing clinical and policy interventions to ensure consistent and equitable access to SPC, particularly during crises.