This study describes the implementation of a PPC program in a middle-income country of Latin America and the Caribbean, where the existence of training programs in this field is absent and the assessment by PPC teams is scarce and limited to the main cities of the territory. The program has focused on an unaddressed gap in the provision of PPC for children in Cali. It has improved referral times, coordination of care, communication with other hospital services, provided compassionate/holistic care to children with limiting and life-threatening diseases, and end-of-life care. The implementation of this program has required the onset of specific strategies and arrangements to promote awareness and education, which has been a difficult task. With this implementation experience, we intend to contribute to the PC philosophy in pediatric patients’ care and hope it serves as a model for other regions and countries.
One of the biggest challenges of creating our TCY program was establishing a PC team with skills, training, and exclusive activity assistance for the pediatric population. Nonetheless, a descriptive study of the development of a PPC program at a Children’s Hospital of Eastern Ontario, Ottawa, showed a significant increase in patient referrals associated with the inclusion of social work resources and experienced PC physicians(31). This was a crucial element to expand PPC demand for children with complex chronic diseases and to increase the program demand three-fold compared with the previous year.
The implementation of the PPC program faced barriers, even with a detailed and comprehensive project plan, adequate economic resources, and a well-trained team. Some studies in this matter identified barriers such as resistance from healthcare professionals(32). To decrease this gap, we established solid and continuous educational campaigns throughout the pediatric units highlighting the important role and health benefits associated with the early referral of children with limiting and life-threatening conditions to PPC, which led to the progressive growth of the program and consequently, a growing number of patients with these conditions in the program(33).
When using the theory-based method description applied to our TCY program implementation, we recognized that the program has focused on advancing professionals and groups of professional in their capacities and competencies and on generating organizational change to find a niche within the hospital but has not influenced policy. Small changes at the policy level can be accounted for by the definition of specific PPC roles and settings for patient care.
We found the proportion of oncological and non-oncological conditions in our program to be very similar. The most frequent diagnoses in both groups were neurological, similar to other implementation studies carried out worldwide. For example, a descriptive study about the development of a PPC program in Canada with 341 patients reported that 24% of the referred children had a neurological diagnosis(34). We corroborate that children with neurological conditions, even if not progressive, experience high distress due to symptom control difficulties(33,35), the high burden associated with care(36,37), and potential complications that could cause premature death(33,34), so the PC team plays a key role in the multidisciplinary management of these patients.
The referral motives regarding our PPC program were associated with supporting therapeutic effort limitation, end-of-life care, comunication support and pain and symptom management, similar to a descriptive study conducted in Argentina, where the reasons for PPC program referrals were pain control (19%) followed by symptom control not associated with pain (16%)(38). This suggests that pain and symptom control are still unattended(39), and treating these symptoms should be a priority and an opportunity for PPC teams to improve the patients’ hospitalization experience. We found the average time from referral to our program until death within a year to be 12 days, which shows that there was a late integration of PPC in the wide and varied conditions susceptible to PC in the pediatric population. In the largest retrospective medical record review for a PPC population in the US by Thrane et al., they evidenced that the time from referral to death was 4.4 months(40). This highlights that children are still not being referred to PC until mere days before death, especially in middle-income countries.
Regarding end-of-life care, the global trend is to promote death at home with patient-family comfort and support measures(41); however, in pediatrics, multiple difficulties arise when trying to promote this measure, and the hospital scenario is the most frequent place of death(42). Our team recognized the same difficulty, and most of our patients (74%) died in the hospital. Some of the barriers identified in favoring end-of-life care at home were related to fear from parents or caregivers to face the death of their child alone, the high attention needs of a patient at the end of life, the lack of home care programs with PC training, and the absence of pediatric hospices in the country, similar to what is described in the literature(41–43). However, some families were able to care for their children at home during their final days.
Finally, family support during bereavement is an essential biopsychosocial need for the family’s well-being after the loss of a child(44). Our program does follow-up to support parents in grief. However, bereavement workshop attendance has been low (25%). Therefore, we consider it an important aspect to improve by increasing coverage and offering more family services. Future goals, achievable through My Child Matters grant, include improving inclusion and access by benefitting more than 500 children in the region, accompanying 1000 families and relatives, and educating more than 1500 healthcare professionals. We also seek to make the enlarged program sustainable.
This study shows the implementation of a PPC program in a university hospital in Cali, Colombia. This is a descriptive study, and the data were retrospectively collected, which implies that selection and information bias could be introduced during its development. To mitigate this situation, our databases were crossed with different sources of institutional information to improve the quality of information. On the other hand, our institution is a specialized reference center for patients with highly complex diseases; therefore, the reported number of patients who benefit from the program is high when compared with other institutions. Additionally, the Colombian healthcare system is based on universal coverage provided by several private insurance companies, and as such, patients are often transferred to other institutions due to individual insurance preferences or administrative limitations, making it hard to keep track of all PPC patients. Likewise, there was no guarantee that all the patients with cancer and life-threatening conditions received outpatient care and completed follow-up through the TCY program because patients often need difficult-to-obtain authorization from their health entity to receive specialized care, such as PPC.
Despite these limitations, our implementation model could be an example to mitigate gaps in the PPC service for Latin America and the Caribbean, where access and opportunity to a PPC team are scarce.