What does it mean to live well with a serious illness? Just because someone is or might be dying, does not mean that they are done living. Our healthcare systems must be equipped to not only strive for health but also to strive for quality of life at every stage of life and illness. We can’t deny patients the opportunity to experience joy, feel peace, bring meaning to their last chapter, and importantly live while they are dying. Ultimately, this is what palliative care provides to those who are experiencing health-related suffering – whether they are dying or not, whether they are still pursuing curative treatment or not – though too few in Canada receive that care.
Palliative care could benefit 89% of those who die in Canada. However, less than 6 in 10 Canadians who died in 2021-2022 received care from the discipline that specializes, in part, in caring for the dying.
The gap in access is significant and bridging it will require a concerted effort across health professions, all levels of government and communities. We can’t afford to not invest the effort.
The Case for Investing in Palliative Care
Access to palliative care in Canada has increased by 6% over 5 years (52% in 2016-17 to 58% in 2021-22). While this is moving in the right direction, we can’t forget that Canada has a rapidly aging population. By 2030, there will be 2.2 million more seniors in Canada than there were in 2022. Since seniors, as a population group, have higher palliative care needs, a 6% growth in access to palliative care over the last 5 years is a drop in the proverbial bucket. This is a demographic timebomb heading straight for our healthcare systems. These systems will inevitably implode under this exponential growth in the need for health care for Canadian seniors, including palliative care unless significant changes are made.
The benefits of investing in increased access to palliative care are huge. This includes cost efficiencies by preventing patients from being hospitalized and occupying expensive acute care beds that aren’t appropriate for their needs. There are thousands of patients in acute care beds waiting for availability in alternate level care (ALC) every day, causing a significant burden on our health care systems. Many provinces are struggling to address the issue, including Ontario, where nearly 40% of those ALC patient days were for patients at end-of-life. There are thousands of days when high-cost acute care beds were occupied by a patient who could have been better served in a palliative care setting if only those beds were available.
Palliative care is more cost-efficient, requires fewer resources overall, can be provided in any setting – including at home where most Canadians want to die, reports higher satisfaction with care from patients and caregivers, and provides caregiver and grief support. Which begs the question: Why aren’t we already doing it for everyone?
Public Awareness
Despite decades of awareness building, most Canadians remain unaware of palliative care, or mistakenly believe that palliative care is only relevant in the last few weeks or days of life. This myth is perpetuated in part because palliative care is often only accessible to people in Canada in those last weeks of life. We don’t have the workforce or resources to provide this care earlier in the illness progression in a consistent way. The public can hardly be blamed for believing this myth since they rarely see any evidence to the contrary.
A recent survey of Quebecers on palliative care showed that despite having the right to access palliative care enshrined in Quebec law since 2015, less than half believed that palliative care could improve quality of life (48%), and 79% believed that palliative care is “comfort care provided to dying patients”. These numbers show the deep disconnect between the heart of palliative care – providing a better quality of life – and its public image, even in a province where it is a legal right. Regardless of where they live, whether they have a specific legal right to palliative care or not, people in Canada deserve to know what palliative care can provide for them, if or when they need it, so they can make informed decisions about their health care.
Training Health Care Professionals
While it’s important for caregivers and patients to understand palliative care, we can’t expect them to know when a palliative approach to care is clinically appropriate. As we educate the public, it’s important to also have well-trained healthcare workers across all disciplines who understand the palliative approach to care. Healthcare professionals can’t be expected to provide or educate their patients on this approach if they don’t have the training to do so.
Every healthcare worker will care for someone with a life-limiting illness at some point in their career. Yet, training on basic competencies in palliative care isn’t consistently integrated into the core curriculum of all healthcare professions. In fact, some medical schools dedicate less than 10 hours of instruction to palliative care. It’s hardly surprising then that only 40% of family physicians in Canada feel prepared to care for patients with palliative care needs. We can’t afford to continue to under-prepare our healthcare workers on this issue. Medical professionals must know how to integrate the palliative approach into their practices so they can provide the best care for their seriously ill patients.
Moving Forward
This issue impacts all of us – none of us are getting out of this life alive. We need to hold ourselves accountable to have these challenging conversations and make changes so we can better live and die across Canada. Governments need to come to the table to increase awareness of palliative care, educate healthcare workers, invest in capacity-building, and incentivize healthcare institutions to provide timely and comprehensive palliative care to every patient with a life-limiting illness. Palliative care is not a luxury, and our healthcare systems cannot hope to survive the demographic timebomb of an aging population without it.
About the Author – Laurel Gillespie, CEO of CHPCA
Laurel Gillespie is the CEO of the Canadian Hospice Palliative Care Association (CHPCA). She holds an MBA (Master of Business Administration) and is a Certified Health Executive (CHE). Laurel currently sits on the Board of the Worldwide Hospice Palliative Care Alliance and served seven years on the Board of Autism Canada.
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