Contributed by Anita Sengupta
In early 2010, Kathleen Carter, an 89-year-old Canadian woman, decided to die with dignity and travelled to Switzerland, where medically assisted dying is legal. Kathleen suffered from spinal stenosis, a terminal disease, and worried that her death would be “slow, difficult, unpleasant, painful, [and] undignified” (para 12). Although Kathleen was able to die on her own terms, her family believed that she should have been allowed to die at home in Canada, surrounded by her family and friends. This led to the landmark Supreme Court of Canada case, Carter v. Canada (Attorney General), February 2015, which ruled that the criminalization of Medical Assistance in Dying (MAiD) in Canada was contrary to section 7 of the Canadian Charter of Rights and Freedoms, namely an individual’s right to life, liberty and security of the person. In June 2016, in response to this decision, the government passed Bill C-14 to amend the Criminal Code, thereby allowing physicians in Canada to provide medical assistance in dying if certain conditions are met.
An important condition to providing medical assistance in dying is that the patient must give informed consent. In Carter v. Canada, the trial judge said, “[…] physicians should ensure that patients are properly informed of their diagnosis and prognosis and the range of available options for medical care, including palliative care interventions aimed at reducing pain and avoiding the loss of personal dignity” (para 106). This ruling not only made MAiD legal, but it also prompted the development of legislation focused on improving palliative care, which was recognized as a viable alternative to MAiD.
Legislation on Palliative Care
The ruling in Carter v. Canada is now more relevant than ever before. There are over 270,000 Canadians who die each year and 90% of them die of chronic and life-limiting illnesses. As the Canadian public continues to age, this number will likely increase rapidly. Hence, there is a growing urgency to better manage human pain and the loss of dignity for those living with life-limiting illnesses.
As the Canadian public continues to age, there is a growing urgency to better manage human pain and the loss of dignity for those living with life-limiting illnesses. || (Source: pixabay // truthseeker08)
In order to address the need for improved end of life care, on December 12, 2017, the federal government passed Bill C-277, which required the Minister of Health to analyze the current state of palliative care across Canada. This resulted in the Framework on Palliative Care in Canada (the framework) that was published on December 4, 2018. This article will reflect on two important aspects of the framework, namely the need for equitable access to palliative care and the importance of culturally sensitive palliative care in a diverse society, including in Indigenous communities.
Access to Palliative Care in Canada
Palliative care is an integral part of healthcare; however, currently only 30% of Canadians have access to palliative care that provides both physical and mental relief to patients. A report by the Canadian Institute for Health Information stated that only one in six adults who died in 2016-17 in the provinces of Alberta and Ontario received publicly funded palliative care. Furthermore, in Quebec, the College of Physicians remarked that inconsistent access to palliative care in Quebec creates a danger that patients may opt for MAiD, in the absence of palliative care.
One contributing factor to the limited accessibility of palliative care is that it is mostly delivered in hospitals. As a result, most Canadians living with life-limiting illnesses die in hospitals, despite their wishes to die at home. This mode of delivery limits the accessibility of palliative care in remote areas, where there are fewer hospitals. Also, those who fear hospitals may be hesitant to access palliative care. This fear may be more prevalent in Indigenous communities, due to a long history of violence and oppression from the days of the Indian hospitals, which forcibly hospitalized Indigenous peoples suffering from communicable diseases and subjected them to horrific treatment and conditions. Although the last of the Indian hospitals closed in 1981, the fear of hospitals lives on in Indigenous communities. To this day, many Indigenous peoples continue to experience racism and receive culturally insensitive care in hospitals, which only serves to perpetuate their deep-seated mistrust of the healthcare system. As a result, most Indigenous peoples only access palliative care once their disease has progressed to its final stages.
Despite many Canadian’s wishes to die at home, palliative care is mostly delivered in hospitals. || (Source: Unsplash // Daan Stevens)
A growing body of evidence suggests that there are greater benefits, such as reduced physical and psychological distress for the patients and their families, when palliative care is delivered at the onset of the disease. Early access to palliative care not only benefits the patient and their families but also reduces hospitalization costs that result from the continual treatment of a disease. This is especially important for Indigenous peoples, who suffer from higher instances of chronic illnesses, such as diabetes, cancer, cardiovascular and infections diseases, as compared to other Canadians.
The Need for Holistic and Culturally Sensitive Palliative Care
Where palliative care is accessible, it is often not delivered in a holistic manner. It fails to provide effective physical and psychological support for patients and their families. This problem is exemplified in Complainant v. College of Physicians and Surgeons of British Columbia, February 11, 2016. In this case, a patient suffering from the final stages of metastatic breast cancer requested the cessation of all aggressive treatments in favor of supportive palliative care. However, her parents argued that the palliative care offered by the hospital was simply a continuation of the intensive treatment that had begun in the emergency room. They believed that their daughter passed away with no psychological, social, emotional, spiritual and practical support offered by the hospital.
The framework recognizes that palliative care needs to include psychological and social support, alongside the delivery of pain relief, in order to improve the quality of life of the patient and their families. Quality of life is very important in some cultures. For example, Indigenous peoples greatly value their quality of life and may refuse aggressive medical interventions, even if they could lead to a cure, if it means sacrificing quality of life. There is a growing realization of the importance of holistic and culturally sensitive palliative care, but there have been obstacles to its delivery. These obstacles include the need to train healthcare personnel and hiring more Indigenous healthcare providers to deliver culturally sensitive palliative care. Many hospitals have already introduced new initiatives to improve their delivery of palliative care. For example, some have introduced live music recitals in the hospitals for patients and their families to mingle and bond while enjoying music. A few hospitals also offer training to their healthcare professionals in the spiritual and cultural needs of Indigenous peoples and in understanding other cultural sensitivities. Many hospitals have interpreters present in the hospitals for those who feel more comfortable speaking in their mother tongue. However, the delivery of culturally safe palliative care remains inconsistent across Canada.
Palliative care needs to be delivered in a holistic manner. || (Source: pixabay // truthseeker08)
The Canadian Society of Palliative Care Physicians recognizes that palliative care needs to be more accessible and available in a timely manner. There should also be different delivery models, such as home care for those who choose to die at home. Canadian society now recognizes that palliative care needs to be holistic and culturally sensitive, especially for Indigenous peoples. The government will have to work with Indigenous communities to re-establish their trust in the healthcare system, and this must include recognition of their distinct cultural needs. These initiatives will require financial investments and time, but will provide patients with options to help them make informed decisions about MAiD. It will also likely reduce healthcare costs in the future, as more patients seek palliative care before their diseases have progressed too far. Most importantly, however, palliative care will provide patients living with life-limiting diseases with an alternative to MAiD, allowing them to receive medical treatments on their own terms and to die with dignity.
Anita Sengupta is a Junior Online Editor for the McGill Journal of Law and Health. Anita is a first year B.C.L/LL.B. student and currently holds the Wainwright Scholarship at McGill University’s Faculty of Law. Anita has an honours bachelor’s degree in Humanities and Biology from Carleton University. Anita was also the recipient of the NSERC research award, which she used to conduct research in plant genetics, using DNA detection techniques. Anita is certified in palliative care and was instrumental in creating a music program for the rehabilitation and palliative care patients at Élisabeth Bruyère Hospital in Ottawa, where she volunteered for five years. Anita is interested in the holistic delivery of palliative care and presented a research poster at the Global Health Conference 2018 hosted by the University of Ottawa Medical School.