A leading Quebec pediatric specialist is raising alarm about how proposed legislation could undermine care for the province's most medically fragile children. Dr. Silvana Barone, medical director at Le Phare, Quebec's first pediatric hospice, warns that Bill 2 threatens the very foundation of pediatric palliative care in the province.
The Human Cost of Productivity Targets
As a pediatrician specializing in pediatric palliative care, Dr. Barone leads a unique team at Le Phare that supports children with life-limiting illnesses from across Quebec. Their work involves comprehensive, holistic care focused on alleviating suffering in all its forms for both children and their families.
Pediatric palliative care cannot be rushed or measured by conventional productivity metrics, Dr. Barone emphasizes. The specialty requires doctors to spend entire days with single families, adjust medications for pain management through the night, and provide emotional support during the most challenging moments of a family's journey.
A Specialty Driven by Mission, Not Money
No physician chooses pediatric palliative care for financial reasons, according to Dr. Barone. Doctors in this field are motivated by deep commitment to the social mission of caring for medically fragile children while supporting their quality of life, providing parental respite, and guiding families through grief and bereavement.
The work involves bearing witness to both intense suffering and indescribable love, often sitting with parents through dark nights and difficult decisions. This profoundly human medical care defies arbitrary productivity targets and cannot be quantified through numbers, charts, or color-coded systems.
Recruitment and Retention at Risk
The adoption of Bill 2 now threatens the retention and recruitment of doctors at Le Phare and similar facilities. Many specialists are concerned about potential penalties associated with practice changes or their inability to meet productivity targets that are fundamentally incompatible with the reality of pediatric palliative care.
Dr. Barone stresses that if Quebec values its social safety net and recognizes the moral responsibility to care for the most vulnerable, the province cannot turn its back on the children and families who need specialized palliative support. Doctors remain committed to their mission, but require government understanding of this precious work's unique nature and requirements.
Silvana Barone serves as medical director at Le Phare, Enfants et Familles and lectures in the department of pediatrics at McGill University. Her perspective comes from direct experience caring for children whose health conditions have transformed every aspect of their lives, focusing on helping them experience moments of joy and connection despite their illnesses.
