First analysis of the Five-year report of the Commission on end-of-life care
Montreal, February 21, 2025 – The “Report on the state of
end-of-life care in Quebec” was tabled on Tuesday in the Quebec National
Assembly. The result of intensive work by the Commission on end-of-life care,
the 127 pages and appendices of the five-year report received limited media
coverage due to the abundance of news items this week.
The Living with
Dignity citizen network (LWD) invites the public to read this important work,
which is available in French at https://csfv.gouv.qc.ca/publications (with highlights available in English) as well as the document Regard
sur les faits saillants du Rapport quinquennal 2018-2023 sur la situation des
soins de fin de vie (A look at the highlights of the 2018-2023 Five-year
Report on the state of end-of-life care) prepared in French by Dr. Michel
Bureau, outgoing president of the Commission on end-of-life care (thank you to
the Commission for allowing us to share it with as many people as possible).
After a first
reading of the documents, LWD would first like to focus on the section on
palliative care, which is very rich in information. The citizen network will
address the other themes of the report, including that of medical aid in dying
(MAiD), in an upcoming second press release.
A glaring lack
of data to paint an adequate picture of palliative care
As the
Commission’s 2023-2024 report on end-of-life care did not address the issue of
palliative care, Living with Dignity is happy to see that the five-year report
deals with it directly (pages 8 to 15). One major observation clearly emerges:
the available data “do not make it possible to ascertain the true level of
access to palliative care in the network or the quality of the care provided,
in particular whether needs are effectively met and what the obstacles are to
accessing timely, high-quality palliative care.” (quotes from the report are
translated by LWD).
This information
casts a shadow over the statement that “nearly 68% of people who received MAiD
were receiving palliative and end-of-life care at the time of the assessment of
their request, and 82% received it between that time and the administration of
MAiD. These proportions are lower than those reported in the Commission’s
2015-2018 triennial report (80% and 89%, respectively).” The question therefore
arises: what proportion of these people had access to comprehensive palliative
care at the right time and with an interdisciplinary approach that was biological,
psychological, social and spiritual? A purely pharmacological approach
(such as the simple administration of morphine) could be described as
palliative care, but that is a highly simplistic view. For a real choice at the
end of life, Quebecers must have access to palliative care worthy of the name
that adequately addresses physical, psychological and existential suffering.
Among the other gaps
identified by the Commission, it should be noted that “the data collected does
not allow for identification of the people who could have or should have
received palliative care because of their illness or condition. This
information can only be collected indirectly, based on terminal illness
diagnoses. Better information on this subject would make it possible to better
assess whether the palliative care provided corresponded to the patients’ needs
as well as, possibly, the reasons for a lack of correspondence (e.g. late
referral, insufficient resources, refusal by the person).”
Do some people
choose medical aid in dying because of a lack of adequate palliative care?
We agree with
Dr. Bureau’s analysis in his “Regards sur les faits saillants” (on page 7):
“The Commission’s 2018-2023 report does not provide a direct answer to this
question.”
We welcome, as
he does, the “steady increase in the number of people receiving palliative care
at home, in palliative care homes and in health care establishments (including CHSLDs)”.
Every effort must now be made to ensure that it is accessible as early as
possible in a care pathway and with an interdisciplinary approach.
Living with
Dignity would like to commend the work of the Commission, chaired until October
9 by Dr. Michel Bureau and now by Dr. Lucie Poitras. The Commission’s role
remains essential and deserves all the resources allocated to it.
– 30 –
Media contact:
Jasmin Lemieux-Lefebvre
Coordinator
Living with Dignity citizen network
www.vivredignite.org/en
438-931-1233
FEB
2025