Though research suggests that most people prefer a home death, a new study from McMaster University, ICES and the Bruyère Research Institute finds that people dying of cancer spent most of their final days in either health care institutions or at home without any health care supports.
The last 100 days of life for people dying of cancer is a time marked by increasing healthcare use and costs, as patients can face aggressive treatments and often suffer with severe pain.
The study, published in Cancer Medicine, set out to describe the different settings of care that Ontario patients access when dying of cancer, including emergency department, inpatient hospital, palliative care units, complex continuing care or rehabilitation, long-term care, and days in the community.
The researchers found that people spent 26 days on average in health care institutions, 26 days in the community receiving care at their doctor’s office or from home care services, and 48 days at home not receiving any care.
“Research shows that patients dying of cancer wish to maintain their independence and autonomy and most indicate they prefer a home death,” says lead author Abe Hafid, statistical analyst at the Department of Family Medicine at McMaster University.
“Although not all patients will want to die at home, our study suggests that there could be a mismatch between people’s preferences and the care they actually receive at the end of their life.”
The study included 125,755 people who died of cancer in Ontario between Jan. 1, 2013, and Dec. 31, 2017 and found that:
- People increasingly spent more time in health care institutions as they approached death (6 days/week on average at home and 1 day/week in a health care institution 14 weeks before death; and 3 days/week on average at home and 4 days/week in a health care institution in the last week of life).
- 24 per cent died of lung cancer, 7 per cent breast cancer, 7 per cent colorectal cancer, 7 per cent pancreatic cancer, 5 per cent prostate and 50 per cent were other types of cancer.
- People with aggressive cancers (such as pancreatic and lung) spent fewer days in institutions than those with less aggressive cancers (such as breast, colorectal).
Though differences were marginal, a general pattern showed that as neighbourhood income increased, patients spent fewer days in institutions and more days at home. People of the lowest neighbourhood income spent fewer days at home with home care than people of the highest neighbourhood income—a resource which ideally would not vary based on income in a universal healthcare system.
“We need to better support patients with cancer to communicate their care preferences and accordingly deliver goal-concordant care,” says senior author Sarina Isenberg, Bruyère Chair in Mixed Methods Palliative Care Research at the Bruyère Research Institute, and assistant professor in the Department of Medicine at the University of Ottawa.
“As well, these findings point the need for more publicly-provided home-based and community-based palliative care services, to alleviate the emotional and financial burden that caregivers may be facing at home.”
The study, “Describing settings of care in the last 100 days of life for cancer decedents: a population-based descriptive study” was published in Cancer Medicine.