The updating of the provisions on medical assistance in death should not be forgotten

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 for sure, living with such a disease has profound repercussions for those affected, their families and carers.

Our group, Neuro Partners, brings together associations representing people with five of these diseases, as well as 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 may be nearly normal, or the progression of the disease may be rapid, resulting in 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 that progress and become intolerable.

For cognitive distress, the situation is much more complex. Currently, legal provisions governing medical care in dying unnecessarily prolong severe suffering for people who nonetheless 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 desire precisely because of the debilitating nature of their suffering.

Medical assistance in dying should be an option for cognitive suffering

Last spring, the Quebec government introduced a bill to update the provisions governing medical assistance in dying by including the possibility of using it upon advance request. This was not approved before the end of the parliamentary session, but there are signs that a similar bill could be tabled again after the general election due this fall.

Despite this delay, we salute the parliamentarians of all political parties who have joined forces to work on this important file. We hope that they will go ahead with this proposal which could allow a form of prior arrangement for people with dementia. Therefore, we believe that it is prudent to take the time to properly discuss this sensitive topic with its many ethical aspects.

Above all, Neuro Partners members respect Quebecers’ freedom of choice regarding their health. We are open to all lifestyle-based care and treatment options for people with progressive neurological diseases. This includes the very personal choice between ending one’s life or continuing it with invasive care.

We believe that a person whose cognitive abilities are impaired may be in so much pain that they would like, or would have wanted, medical assistance in dying just as much as a person in physical pain. In any case, it is of great importance that the people who carry out the procedures 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 assistance in dying is a last option. Obviously, it is desirable that the largest number of people suffering from diseases can aspire to cure their suffering instead of having to resort to this last way to end it.

This truth from La Palice leads us to point to a reality faced by many Quebecers living with a progressive neurological disease. These include insufficient resources for long-term care and community care, and difficulties accessing innovative new medications and treatments designed specifically for people with chronic illnesses.

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 around medical assistance at the death of people who experience cognitive suffering, it is of crucial importance to facilitate access to treatment if we want to have a health system that aims first and foremost to help people to live.

Signatories

Louis Adam, Executive Director, Multiple Sclerosis Society of Canada, Quebec Division

Marie-Hélène Bolduc, Vice President, Programs and Services, Muscular Dystrophy Canada

Caroline Champeau, General Manager, Parkinson Quebec

Claudine Cook, Executive Director, Quebec Amyotrophic Lateral Sclerosis Society

Francine Lacroix, Executive Director, Huntington Society of Quebec

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