As discussed in last week’s article, palliative care is an essential part of the Canadian healthcare system and designed to improve the quality of life for patients with serious illnesses. The benefits of palliative care, particularly when it is provided early, improves patients’ quality of life. However, many Canadians face barriers to accessing early palliative care, leading to unnecessary suffering and reduced quality of life. In this article, we explore some of these barriers and discuss the work patient advocacy groups across Canada are doing to reduce them.
Barriers to Care
Lack of Understanding
Despite Canada’s ongoing efforts to enhance our understanding of palliative care, the absence of a standardized definition remains a significant challenge. This lack of clarity perpetuates the common misconception that palliative care is synonymous with end-of-life care, contributing to the stigma associated with the term “palliative.” Furthermore, without a unified definition, it is difficult to measure the effectiveness of palliative care services.
Geographic Disparities
Canada’s geography affects access to palliative care, with rural and remote communities often lacking adequate healthcare infrastructure and specialized palliative care services. A 2023 study found that, while a similar proportion of individuals from urban and rural settings are being identified as palliative, patients from rural areas are more likely to be hospitalized for their palliative care (vs. at-home care or hospice care) and were more likely to die in a hospital than individuals from urban areas. This is likely due to limited availability of palliative care centers, like hospices. Though a standard number of hospice beds per capita has not been agreed upon, 7 beds per 100,000 people has been previously suggested as a best practice. However, based on a 2023 report, British Columbia and Yukon are the currently the only provinces to exceed this suggested threshold, with Manitoba, Newfoundland and Labrador, Northwest Territories, Nunavut, and Saskatchewan all having less than 2 hospice beds per 100,000 people.
Cultural Barriers
Much of Canada’s palliative care system is based on Eurocentric ideals, affecting how we approach spiritual care and end-of-life compassion. Studies have shown that Black Canadians and Indigenous individuals and their families are more likely than their White counterparts to report negative experiences with palliative or end-of-life care, particularly when it comes to how spirituality, culture, and language was handled. Moreover, marginalized communities often lack equitable access to palliative care resources, leading to disparities in understanding and utilizing these services.
Role of Patient Advocacy Groups
Patient advocacy groups across Canada are actively working to mitigate these barriers and improve access to early palliative care. Here are some of the ways they are making a difference:
Improving Understanding
The Canadian Hospice Palliative Care Association (CHPCA) leads national awareness campaigns, such as National Hospice Palliative Care Week, to educate the public and healthcare providers about the importance of early palliative care. They also provide resources and workshops to dispel myths and promote a better understanding of palliative care.
Virtual Hospice offers online resources for patients, families, and healthcare providers, including frequently asked questions about palliative care, decision-making assistance, and coping strategies.
Pallium Canada’s LEAP program provides training for healthcare professionals across various disciplines, and through various settings. These courses equip providers with the necessary knowledge and skills to deliver high-quality, earlier palliative care.
The Canadian Society of Palliative Care Physicians (CSPCP) offers specialized training and continuing education for physicians in palliative care. They also advocate for improved palliative care education in medical schools and residency programs, ensuring that future healthcare providers are well-prepared to offer palliative care.
Addressing Cultural and Geographic Barriers
Pallium Canada is dedicated to improving the quality and accessibility of palliative care services across the country. They develop and provide education and resources to health professionals to help integrate palliative care into their practice, particularly in underserved areas.
Compassionate Communities initiatives, supported by organizations like BC Centre for Palliative Care and Pallium, work to create supportive networks that help patients and families navigate the healthcare system. These communities can provide resources and connect patients with local palliative care services, ensuring more coordinated care.
Dying With Dignity Canada advocates for equitable access to palliative care. They provide educational materials, advocacy, and support to help reduce cultural and geographic barriers to accessing early care.
The Canadian Cancer Society has collaborated with provincial and territorial governments to integrate palliative care into the healthcare system. They offer services like transportation and accommodation assistance, which help ensure that patients with cancer have equitable access to palliative care services across Canada.
Conclusion
While barriers to accessing early palliative care in Canada exist, patient advocacy groups are playing a crucial role in overcoming these challenges. Through education, improved accessibility, training, support, and advocacy, they are making significant strides in ensuring that all patients can benefit from early palliative care. The ongoing efforts of these groups are vital for creating a more equitable and compassionate healthcare system for those with serious illnesses.
