Understanding the lived experience of those affected by disease

The demand for palliative care, access to health care services (particularly outside of business hours), complications and caregivers’ support needs are among the topics discussed in a new report on life-limiting illnesses from Statistics Canada. 

“The purpose of this study is to better understand the lived experience of Canadians who are affected by diseases or conditions that cannot be cured, get worse over time and ultimately shorten their lifespan,” researchers write in the report, Living with a life-limiting illness: A 2024 national crowdsourced study of experiences and access to care. “It also aims to provide information on the experience of Canadians who act as unpaid caregivers in a non-professional capacity – such as family, friends or community members – to those with life-limiting illnesses,” they write.

The study is small – just 984 participants contributed. Among the findings perhaps of note to benefits providers: 80 per cent of participants strongly agreed or agreed that health care services were hard to access outside of regular hours. The top service participants had difficulty accessing at the time they needed it was pain and symptom management.

Complications due to delayed support 

Over half of the study’s participants reported having complications due to delayed support for serious illness. More than 71 per cent reported visiting the emergency room in the year preceding the study’s data collection.

The study noted that 83 per cent of the survey’s respondents lived in a private home or apartment; 47 per cent expressed a preference for receiving end-of-life care in these settings. Palliative care meanwhile (can be provided alongside active treatment and not solely at the end-of-life) was also discussed. Patients with cancer had better access to palliative care than those with other conditions. They say dementia and Alzheimer's patients made up the highest proportion of participants receiving a low level of care.

Finally, participants over age 65 identified respite care for caregivers as a service they had difficulty accessing in times of need. Among caregivers surveyed, 39 per cent stated that they received no help at all.