Many people associate palliative care with end of life care in a hospice, but it also includes caring for people who have life-limiting conditions like multiple sclerosis or lupus.
A new study suggests many people don’t know this and don’t know to seek palliative care in their homes when needed.
Sally Toivonen has lupus.
The condition limits her mobility and ability to work.
She has been receiving in-home palliative care for more than 25 years and she says it has changed her life.
"Not only has it improved the quality of life, it's given me the will to live. Because it's not doom and gloom, oh I can't do that for myself. My worker comes in; it's a joyous, joyous thing. Because I have interaction with people, I’m not in my house, in solitude by myself. I look forward to my worker coming and she's become my friend." said Toivonen.
Sally has also seen end-of-life care of a loved one as well.
Her husband passed away at the local hospice in 2016 due to complications from exposure to asbestos.
She says people need to know there can be palliative care in the community.
"ARCH was able to introduce that gentle side of that meaning, palliative care. A lot of people think palliative care is just end of life and getting you to that death stage. It's not. It encompasses caring, nurturing, and not only just for the person who is dying, but with the family who is involved with that as well." said Toivonen.
Officials with the Canadian Institute for Health Information say they have heard many stories just like Sally Toivonen's.
And they say while many people are benefitting from receiving palliative care at home, their study shows more work needs to be done to make people aware of the services.
"We talked to some very savvy consumers in the health system and they said they really didn't know what palliative care was, when it should start, or what services to ask for. We also found out in our study that three out of five Canadian family physicians said they didn't feel well prepared to be able to help out with palliative care." said Kathleen Morris, of Canadian Institute for Health Information.
The study was conducted with information from 2016 and 2017 and shows 89% of people could have benefitted from some form of palliative care at home, but only 15% received publicly- funded care during their last year of life.
