Life after a diagnosis of progressive neurological disease can vary greatly from person to person. These incurable diseases are not necessarily all terminal. One thing is sure, living with such a disease has profound repercussions on those who are affected, on their family members and on caregivers.
Posted yesterday at 10:00 a.m.
Our group, Neuro Partners, brings together associations that represent people with five of these diseases and their loved ones: muscular dystrophy, Huntington’s disease, Parkinson’s disease, multiple sclerosis (MS) and amyotrophic lateral sclerosis. (ALS).
Among people with these diseases, life expectancy varies greatly. It can be almost normal, or the progression of the disease can be rapid and result in a considerable worsening of the degree of physical and cognitive disability. In cases of physical suffering, medical assistance in dying can sometimes be the only recourse to shorten those which progress and become intolerable.
For cognitive suffering, the situation is much more complex.
Currently, the provisions governing medical assistance in dying result in severe suffering being unnecessarily prolonged in people who nevertheless meet the rigorous eligibility criteria for this service.
This situation is explained by the fact that these people are not able to clearly express their wish precisely because of the debilitating nature of their suffering.
An option for cognitive suffering
Last spring, the Government of Quebec presented a bill to update the provisions governing medical assistance in dying by including the possibility of resorting to it with an advance request. This was not passed before the end of the parliamentary session, but there is every indication that a similar bill could be presented again after the general elections scheduled for the fall.
Despite this delay, we salute the parliamentarians of all political parties who have united their efforts to work on this important file. We would like them to bring forward this proposal, which could allow for a form of pre-arrangement for people with dementia. We therefore believe that it is wise to take the time to properly discuss this delicate subject with its many ethical aspects.
Above all, the members of Neuro Partners respect the freedom of choice of Quebecers regarding their health. We are open to all care and treatment options based on the lifestyle choices of people with progressive neurological disease. This includes the very personal option of choosing between ending one’s life and continuing life with invasive care.
We believe that a person whose cognitive abilities are impaired may be in such pain that they wish — or would have wished — to have medical assistance in dying as much as a person who suffers from physical pain.
In any case, it is of great importance that the people who take the steps to obtain it can have access to all the information necessary to make an informed decision.
The urgency of facilitating access to innovative treatments
It is important to remember that medical aid in dying is a last option. Obviously, it is desirable that the greatest number of people suffering from illnesses can aspire to cure their suffering rather than having to resort to this ultimate way of putting an end to it.
This truth from La Palice leads us to point out a reality faced by many Quebecers who live with a progressive neurological disease.
Long-term care and community care resources are insufficient, and access to innovative new drugs and treatments designed specifically for people with chronic conditions is difficult.
Drug research and development is a long-term process. But, once new treatments are discovered, we need to speed up their approval and accessibility process.
Beyond the importance of updating the provisions surrounding medical assistance in dying for people who experience cognitive suffering, it is of crucial importance to facilitate access to treatment if we want to have a health care system that aims first and foremost to help people live.
* The signatories of the “Neuro Partners” group are: Louis Adam, Executive Director of the Multiple Sclerosis Society of Canada, Quebec Division; Marie-Hélène Bolduc, Vice-President of Programs and Services at Muscular Dystrophy Canada; Caroline Champeau, General Manager at Parkinson Québec; Claudine Cook, Executive Director of the Amyotrophic Lateral Sclerosis Society of Quebec and Francine Lacroix, Executive Director of the Huntington Society of Quebec.