Canadian guideline for Parkinson disease

The Canadian Society of Palliative Care Physicians (CSPCP) welcomes the inclusion of palliative care in the new Canadian Guideline for Parkinson Disease (1) and commends the authors for making it one of their five key recommendations. Early integration of a palliative approach to care is essential for all persons with serious and life-threatening illnesses, including those with neurological illnesses (2-3).

However the CSPCP strongly disagrees with the way that Medical Assistance in Dying (MAiD) is portrayed throughout the Guideline as being an option included under palliative care. Palliative care and MAiD are distinct, as recognized in Canadian Medical Association (CMA) General Council Resolution GC 15-35, which states that: “Assisted death as defined by the Supreme Court of Canada is distinct from the practice of palliative care”.

National and international standards for palliative care, including the World Health Organization’s definition of palliative care, clearly state that palliative care focuses on providing support to enable people to live as well as possible until they die but “does not hasten death” (4). MAiD is a legal option for some patients who qualify and choose to pursue it but is not part of a palliative approach, as described in our CSPCP Key Messages on Palliative Care and MAiD (5).

Confusion ensues when MAiD is seen as part of palliative care. Linking MAiD and palliative care perpetuates the myth that palliative care hastens death and may prevent patients from seeking early palliative care interventions, which improve quality of life and in some cases even enable people to live longer. The Canadian public must be able to continue to trust that the principles of palliative care remain focused on effective symptom management and psychological, social, and spiritual interventions to help people live as well as they can until their death.

The CSPCP recommends that the authors clarify the important distinction between palliative care and MAiD in their Guideline. In particular, we recommend that the visual summary of recommendations (p.41) be modified to include a sixth coloured box which would list MAiD as a separate option from palliative care, so the two are not conflated.

The CSPCP advocates for universal access to high quality palliative care to address the suffering experienced by patients with Parkinson Disease and their families. The distinction between palliative care and MAiD must be clearly articulated and understood.

References:
1. CMAJ 2019 September 9; 191: E989-1004. doi: 10.1503/cmaj.181504
2. Provinciali L, Carlini G, Tarquini D et al. Neurol Sci (2016) 37: 1581. https://doi.org/10.1007/s10072-016-2614-x
3. Boersma I, Miyasaki J, Kutner J, Kluger B. Neurology (2014) 83(6): 561. doi: 10.1212/WNL.0000000000000674
4. www.who.int/cancer/palliative/definition/en Accessed Oct 16, 2019.
5. https://www.cspcp.ca/wp-content/uploads/2019/06/CSPCP-Key-Messages-PC-an... Accessed Oct 16, 2019.