Palliative Care information you need to know

A report entitled “Access to Palliative Care in Canada” was recently published by the Canadian Institute for Health Information (CIHI) with financial contributions from Health Canada and provincial and territorial governments.

Palliative care is an approach to care that aims to reduce suffering and improve the quality of life of persons living with life-limiting illnesses.

Palliative care…

• Is active treatment to address the symptoms and stress of living with a serious illness.
• Can benefit people with a serious illness starting as early as the time of diagnosis
• Can benefit people of any age and with any serious illness.
• Is an extra layer of support that can be received along with other treatments.

Palliative care is care for the whole person. It includes support in the following areas:

• Physical – Provision of medication and treatment to increase comfort as well as equipment and strategies to make daily life easier;
• Emotional – Help with understanding what to expect, making decisions and expressing feelings;
• Social – Support with staying socially connected and support for the people who matter most; and
• Spiritual – Help with engaging in activities that bring meaning and joy.

Supporting and improving access to palliative care is a goal of Canada’s health systems. Canadians are living longer and, as we do, the number of people living with life-limiting illnesses, such as cancer or kidney disease, is growing. These factors increase the demand for palliative care. Unfortunately, supply has not kept pace with demand, particularly with respect to home-based palliative care.

The 2023 report specifically looked at:

• Whether more Canadians are accessing palliative care (compared to data from 5 years ago);
• Who isn’t getting the palliative care they need; and
• Where gaps exist and what opportunities there are to improve.

The main findings were that, in Canada:

• More people are receiving some form of palliative care compared with 5 years ago.
• More people are dying at home with palliative support compared with 5 years ago.
• Some people experience greater barriers to accessing palliative care because of their age, where they live, or their disease diagnosis.

Many people do not qualify for palliative care until they are in their last days or weeks of life. Ideally, palliative care should begin much earlier than that. In addition, although most people would prefer to die at home, many end up dying in hospital “even when they have community supports such as long-term care or home care”.

Palliative care should be accessible to all Canadians regardless of their age, their sex or gender, the expected path of their illness, their community, their socio-economic status or their culture. However, the report’s analysis shows that this isn’t the case.

Patients involved in the development of this report say there’s reason for concern in Canada about uneven access to and gaps in the delivery of care. Also, much of the responsibility for advocating for palliative care falls on the patient and their caregivers at the same time as caregivers have reported a lack of information on services and resources available to them.

Canadian research on ethnic background and palliative care suggests that people of colour and recent immigrants may have poor access. Specifically, those “born abroad were more likely to die in hospital and less likely to be discharged to PCU [palliative care unit] than those born in Canada.” People experiencing homelessness also face barriers to receiving palliative care. Previous studies report that issues such as unstable housing and a lack of social supports can make it more difficult to get palliative care.

Rural areas are unlikely to have the same accessibility to palliative care as urban centers. In particular, improvements in community respite care and supports for home-based caregivers are needed in rural areas.

The CIHI recommends that Canada and the provinces/territories focus on major gaps including support for caregivers and delivering palliative care more consistently.

A future article will focus on palliative care in Alberta and how to access it. In the meantime, Alberta-specific information can be found at https://myhealth.alberta.ca/palliative-care/what-is-it or https://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/Topics/Topics/What+Is+Palliative+Care_.aspx.