VP-NET Vulnerable Persons and End of Life New Emerging Team
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Experiences of those who have difficulty or are unable to access the traditional palliative care system

"The system" consists of programs, services and facilities that provide health care. Some people are barred from accessing that system due to physical, social and other obstacles created by existing procedures or rules based on traditional ways of doing things, assumptions about who a patient is and their needs. These obstacles are important not only at end of life, but also during earlier stages and in circumstances such as access to diagnostic opportunities available to non-disabled persons.

According to a report from the Canadian Palliative Care Association, only 15% of Canadians have access to palliative care programs and services. Although physical access issues and a lack of information in accessible formats create barriers for many people with disabilities to basic healthcare, access can also be restricted because of poverty, attitudes and assumptions, treatment issues, cultural barriers and other forms of social marginalization. 37

Poverty

Poverty is an important factor that can undermine people’s health and restrict access to healthcare options, but some health policies don’t reflect this consideration. The rate of people with disabilities who experience poverty is disproportionately higher than that of other Canadians, and many don’t have the financial ability to pay for food, medication and other supports that help them live longer and better.

Treatment issues

Some people are never given the opportunity to move into palliative care because they continue to receive clinical management related to their primary illness or disability in acute hospital settings even though it is clear that they are dying and might benefit from palliative care. One group for whom this is a common experience is people with renal failure. It also happens to people who live in rural and remote areas where no palliative care programs with appropriate supports exist.

Cultural Barriers

Situations become even more complex when people with cultural backgrounds have distinct understandings of dying and death not understood or accommodated within the system. In Canada cancer care providers are only beginning to recognize Aboriginal needs and many First Nations peoples are not referred to palliative care when they are dying. Street people also live and often die outside the system. National leadership in palliative care suggests that along with seniors’ housing, hospitals, and extended care homes, "the street" needs to be added as a site of palliation.38

Members of the gay, lesbian and transgender community may also be hesitant to seek help from a palliative care system that had its beginnings in a predominantly white, middle-class, Judeo-Christian value system. This is related to the fact that volunteers and support staff, who are representative of a dominant and able-bodied majority, are not always equipped to understand the experience of social marginalization.

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