Amidst a heated debate over healthcare protocols, a seasoned pediatrician, Jesús Sánchez Etxaniz, with over 13 years of experience in palliative care, has voiced his frustration and disappointment after being reprimanded by the Basque health service, Osakidetza. The reprimand came after Sánchez and his team provided care for a four-year-old girl in her final days, outside of their official working hours. Sánchez described the experience as emotionally taxing, as he and his dedicated team of nurses and psychologists made multiple visits to the child's home, often in the early hours. Despite their heartfelt intentions, they were chastised the day after the child's passing for utilizing hospital resources without official sanction.

The Basque Health Minister, Alberto Martínez, refuted any formal reprimand, acknowledging only a "preventive communication" was issued. This has sparked criticism from the platform Echamos de Menos, a coalition of palliative care associations, which condemned this as a symptom of a systemic issue where those providing exceptional care face undue punishment. The platform, representing 30 entities, highlights that each year around 200 children in the Basque Country require specific pediatric palliative care, yet the current system fails to meet these demands.

Sánchez, in a public letter, announced his decision to take a hiatus, citing the untenable working conditions despite being on medication. He expressed hope for a return under better circumstances. His narrative underscores a critical gap in the care system, where the commitment to provide palliative care extends beyond regular hours without institutional recognition. Until recently, they received informal acknowledgment but were left to operate under their own responsibility.

The pediatrician's journey began 13 years ago, pioneering home-based pediatric palliative care in the Basque Country. Despite early accolades from the organization, constraints were imposed, limiting services to weekdays from 8:00 AM to 3:00 PM. Sánchez argued that death does not adhere to schedules, and ethically, families should not be deprived of support during non-office hours if they choose home as the final resting place for their loved ones.

In response, Minister Martínez clarified that the communication to the palliative team was a precautionary measure, advising them to notify if taking hospital vehicles, purely for safety considerations.

The platform Echamos de Menos criticized the lack of a 24/7 palliative care team, with coverage only during morning hours and no specialized teams across the Basque provinces. This has left families like Nereida's, whose infant son succumbed to cancer after three months of palliative care, feeling unsupported despite the team's unwavering dedication during all hours. She expressed her dismay at the reprimand, questioning Osakidetza's priorities while expressing gratitude for the compassionate care her family received.

Ainhoa Fernández, from Aspanovas, highlighted the unmet need for home care for children with cancer, noting the absence of teams in Álava and Gipuzkoa, with only the Cruces team in Bizkaia offering limited service. Despite commitments in the 2023-2027 Euskadi palliative care plan, Fernández lamented the lack of continuous care, viewing it as a fundamental right for patients and families.

Organizations in the palliative care sector recognize the dedication of the Cruces team, whose services extend beyond their official duties, earning immense gratitude from families. Echamos de Menos has escalated their concerns to the Department of Health and has initiated a public awareness and advocacy campaign, spotlighting Euskadi's failure to meet national standards as reported by the Ministry of Health.

Dr. Sánchez's revelations call for urgent reforms in end-of-life care for minors, advocating for continuous support for families opting for home-based care. He urged society to recognize and address these deficiencies, suggesting that family voices may have the power to influence policy makers.