Dr. Ebru Kaya is an associate professor of medicine in the division of palliative medicine, and the president of the Canadian Society of Palliative Care Physicians (CSPCP). Dr. Leonie Herx is division chair and associate professor of palliative medicine at Queen’s University and the former president of the CSPCP.
In a rather short time, Canada has seen a rapid expansion of medical assistance in dying (MAID). In June 2016, the federal government legalized assisted death for those nearing the end of their lives through the direct administration or self-ingestion of a lethal dose of drugs prescribed by a physician or nurse practitioner. Less than five years later, the government expanded MAID to those with a chronic illness or disability, and in March, 2023, MAID will become available to those with mental illness as a sole condition. Now, a special joint parliamentary committee is considering further expanding access to consenting children (“mature minors”) and to those who wish to set advance requests.
While access to MAID is guaranteed in Canada, access to palliative care and other supports, including home and disability services, are not – and worse, MAID is being provided at the expense of already limited palliative care resources. No one should feel compelled to choose an early death because of inadequate care. Tragically, too many physicians know of patients who opted for MAID due to lack of adequate palliative home-care resources to remain in their homes or communities.
Palliative care is a vital service, with clear economic, health and social benefits. It provides medical assistance in living (MAIL) through early identification and impeccable assessment and management of pain and other symptoms – physical, emotional, social and spiritual – that enhance quality of life, reduce depression and anxiety, reduce caregiver distress and may even help people live longer; it does not hasten death, nor does it end life. The National Framework on Palliative Care received unanimous support by parliamentarians in 2018. Yet palliative care has not received the necessary investments and attention to make it a reality for Canadians.
Patients don’t have access to enough information, or sometimes even correct information, about palliative care. Many are not aware how palliative care can help relieve their pain or other symptoms to help them live well until they die. Well-meaning public figures and clinicians who have a strong bias toward MAID, but don’t understand palliative care, cause confusion by perpetuating myths that dying necessarily involves intense pain and suffering. As a result, too many Canadians believe that a natural death is uncomfortable and undignified.
Moreover, many palliative care services have had to integrate MAID into their programs in order to continue to receive provincial or federal funding, even though they are fundamentally different. As a result, already scarce resources – including hospice and palliative care unit beds, as well as skilled nurses and doctors – have been diverted to support MAID services.
Palliative care must remain separate from MAID to avoid the risk of confusion between the two. This is especially important for communities that have an underlying distrust of the health care system who decline palliative care because they confuse it with MAID. This does not preclude people who contemplate, request or opt for MAID from receiving palliative care – but in order to make informed choices, patients and family caregivers need to know what palliative care actually has to offer.
As a person approaches the end of his or her life, the inevitable physical decline is viewed in Western European culture as undignified, full of suffering, and a burden on caregivers. However, this belief is not shared by all cultures. Indeed, it should be noted that white, well-educated and wealthy Canadians have led the advocacy for legalization and expansion of MAID; it is not, however, this demographic that bears the pressures to choose MAID due to lack of access to palliative care and other supports needed to live. The government focus on MAID thus disproportionately benefits the already privileged, while continuing to underserve the rest of our society who might not have the same values or advantages.
Canadian legislation positioned palliative care as a safeguard to address suffering that might otherwise lead to MAID, and it has led to a tension between MAID and palliative care. As a result, physicians and organizations such as the Canadian Society of Palliative Care Physicians are seen as opposing MAID or obstructing access to MAID when they advocate for palliative care to address suffering.
The expansion of MAID should not be considered without first addressing fundamental problems of inadequate access to care and resources. The expectation that MAID and MAIL can develop in parallel is a fantasy – and the most vulnerable among us risk paying the price.
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