EXTRA Team Photo

Centre intégré universitaire de santé et de services sociaux (CIUSSS) du Saguenay-Lac-St-Jean (Québec)

  • Céline Benoit, Directrice adjointe des services professionnels responsable de la cancérologie et des soins palliatifs, CIUSSS du Saguenay-Lac-Saint-Jean, Dolbeau-Mistassini, Québec
  • Danielle Delisle, Adjointe du directeur du programme jeunesse, CIUSSS du Saguenay-Lac-Saint-Jean, Chicoutimi, Québec
  • Martyne Gagnon, Conseillère-cadre services psychosociaux, CIUSSS du Saguenay-Lac-Saint-Jean, Jonquière, Québec
  • Jimmy Martel, Chef de l’administration des programme équipe spécialisée en santé mentale et dépendance et services ambulatoires jeunesse, CIUSSS du Saguenay-Lac-Saint-Jean, Dolbeau-Mistassini, Québec

Quality, Accessibility and Proximity of Pediatric Palliative Care Services and Practices

From the outset, it is relevant to mention that 65% of the population served by the CIUSSS du Saguenay-Lac-Saint-Jean lives in a rural area and that our extensive catchment area is spread across 95,900 square kilometers. Quebec’s 2006 standards for pediatric palliative care define 6 categories for deaths among children: children whose condition is appropriate for a curative treatment, the outcome of which is uncertain; children whose condition will inevitably result in their premature death; children with a progressive condition with no hope of recovery; children with severe neurological problems; new-born babies whose life expectancy is very limited and family members who have unexpectedly lost a child.

In Quebec, between 1997 and 2001, the average number of annual deaths for all 6 of these categories was 840 (pediatric palliative care standards, 2006, p. 20). If one considers that Saguenay-Lac- Saint-Jean represents 3 per cent of Quebec’s total population, this translates into an average of 20 children per year on a regional basis. A quick review of 2015-16 shows 2 deaths at home, 4 deaths in hospital for non-traumatic causes and 7 youth who sought follow-up palliative care within the health and social services network. This suggests that part of our clientele dies and receives services outside of our region, information that we were unable to validate. Therefore, with a view to offer quality local care based on best practices and to meet standards established by the ministry (MSSS) in pediatric palliative care, we intend on creating a model for the organization of care and services that ensures both quality and proximity for pediatric palliative care clients despite low case volumes. In fact, most palliative care models recommend community involvement, in a broad sense, for this type of care (Plan de développement 2015-20 soins palliatifs et de fin de vie, MSSS, Québec, 2015). This aspect could be included in potential solutions to consider.