The recent reopening of the debate on end-of-life care exposes our complex adaptation to time. Sometimes because some want to shorten their life experience. Sometimes because others want to let the rest of life go by in the best possible comfort.
Time is expressed in different hues according to the values, the age, the vision of humanity. And we discuss our collective intervention to ensure these choices. But basically, despite collective orientations, everyone’s relationship to time, and to the end of our time, varies.
“We only ever visit downstream
Not backward in time
Than those impetuous seconds that tumble
Passing to the after, neglecting the before. »
As a crazy teenager, I wrote these stanzas respecting the instructions of the teacher who asked us to conceive of time poetically. But the then inexperienced, who had not yet rubbed shoulders with people struggling with the management of the end of their life, omitted the duty of history and memory. The essence of any discipline. Respect the time. The one who comes, yes, but the one from the past and the one who fades too quickly at the moment. Because the people who live with cancer and whom I see on a daily basis have a personal story that takes place over time, with periods of hope, waiting, observations and decisions.
Unfortunately, this is too often the impression of the clinician. Wasting time. Wasting their time. The one we would like to preserve by timely diagnosis, the one we would like to lengthen by repudiating the disease. Because we know, through experience, through understanding the past, that each moment of waiting has an impact on the right to attempt to perpetuate one’s existence.
In oncology, time is a constant in the discussion. How long, doctor? A question without an exact answer, which is framed by statistics, by the presentation of treatment options that have a personal efficacy and toxicity to each. Time that we also want to qualify. Life time in quantity and quality.
There is all the relativity too. The precocity of a diagnosis, risking losing your life young rather than in a state of age-related failure.
But in all circumstances, to know, to have the assurance, that time is not reduced by human action or inaction.
By waiting lists that reduce the possibility of surviving cancer longer, by delays in obtaining a diagnosis, by limitations in genetic information that provide potential targets, by the refusal to offer treatments innovative for financial or organizational reasons.
Today’s patients are potentially more likely to develop cancer, but also to be offered a longer survival or even a cure. Yes. Because there are ifs.
If we oblige ourselves to care. If we respect the teachings of science and the need to reduce delays. If we allow resources and objectives to decide to push the limits of human experience. If we adequately equip caregivers and recognize their value. The ifs increase tenfold when, as in Quebec, we swim in the uncertainty of the data, of what we do well, of what we do less well.
Quebec is at the time of obliging itself. Collectively. Individually. In my opinion, we must agree to prioritize the fight against cancer, cancer care, regardless of the stage of the disease, whether the objective is survival or palliation.
By measuring our effectiveness. By adopting a strong, decisive, apolitical, responsible and accountable structure. The demand for an independent oncology agency in Quebec is not new. It is part of time, of what has not been done, of a lesson that should have been learned, of teaching that has not been tested, of resources that have not have not been agreed, of objectives which are not based on consensual guidelines.
The recent Bill 11 modifying the conditions of medical assistance in dying and the provision of palliative care also imposes a debate on the notion of obligation to provide care. in view of the objectives. With regard to resources. While the obligation to provide care was generally recognized as enshrined in Act respecting health services and social services. Like Bill 11 on end-of-life care, should we legally guarantee access to all oncology care? Like science, it would be important to develop a rational, consistent plan. By allowing yourself to be ambitious and benevolent.
Francois Archambault, in you will remember me, makes its main character say that reality disappoints idealists. I wish us to hit the road hoping that the reality of tomorrow will continue to disappoint us, not in recognition of our incapacity, inertia or lack of action, but so that we refuse that what we do is sufficient. as long as cancer is a reality. In 2023, there are plenty of idealists out there ready to offer the best ways to stave off the disappointment of a cancer diagnosis. Ethically, I would like us to agree together to stay away from a law that binds this government and subsequent ones. Morality before legalism. Commitment before constraint. A duty carried out by the mission.