Talking about end-of-life care is still taboo in Quebec, reveals a survey carried out by Léger and commissioned by the PalliAmi Foundation. Among survey respondents, 52% have never broached the subject of palliative care with anyone, while 35% of participants said they were unprepared to have this discussion if a loved one spoke to them about it.
The survey data was collected from April 19 to 21, from 1,061 Quebecers aged 18 and over. And the results did not surprise Line Bellavance, general director of the PalliAmi Foundation, an organization that works in the palliative care unit of Notre-Dame Hospital in Montreal.
According to Mme Bellavance, we spend our entire existence learning to live, but often, we rush to make decisions concerning our last moments, when the announcement of a fatal diagnosis comes as a shock.
“In a very short time, we have to prepare for that. Often, these are conversations that have not necessarily taken place with loved ones, to prepare what care we want, what arrangements we want, what “We want a ceremony if we have religious or spiritual beliefs,” she explains in an interview.
“If we don’t talk about it before, it adds to the emotional, psychological burden on loved ones and even patients,” she adds, emphasizing that decisions must then be made in emotional moments.
On the occasion of National Palliative Care Week, which takes place from May 5 to 11, Mme Bellavance invites citizens to have a discussion about palliative care with their loved ones.
“I notice when we welcome patients to the palliative care unit that, obviously, when it has been discussed, when the relatives know a little about what the person wants, it much facilitates the care that is offered to the patient and the support that can be given,” she says.
The Director General believes that it is more appropriate to have this discussion when the person concerned is in good health.
“Discussing it doesn’t attract the evil eye,” she said. Yes, we need to discuss it, we need to get over this worry, to ensure that things go much better. »
The Léger survey also reveals that 58% of respondents believe they are well prepared to discuss end-of-life care. The document indicates that 37% of participants who have ever brought up the topic of palliative care in a discussion were comfortable doing so, while 10% were uncomfortable.
Still ignorance
Half of the people surveyed by Léger said they were worried about not having access to palliative care at their own end of life.
According to Mme Bellavance, this fear does not come from a problem of accessibility to palliative care in Quebec, but from a lack of knowledge about it. She believes that the population is more aware of curative care, aimed at curing an illness, than palliative care, which intervenes when it is no longer possible to cure a patient.
“There are people who may be in palliative care either to control pain or to control the manifestations of the disease, but who are entirely capable of living a completely normal life until the disease takes over. the top. So palliative care doesn’t have to scare people,” she explains.
The PalliAmi Foundation, for example, offers several services, such as music therapy, pet therapy or support from volunteers in order to soften the end of patients’ lives.