Public–private collaboration in the provision of palliative care for children and adolescents with cancer: A Chilean experience

Abstract Background In Chile, children and adolescents with cancer in need of palliative care receive services through a collaborative scheme run in coordination between the hospitals of the public health system that attend children with cancer and the non‐profit civil society organization Fundación Nuestros Hijos (FNH). Aim The main objective of this article is to offer a summary of the Chilean experience in the provision of palliative care services for children and adolescents with cancer, as an example of a public‐private partnership that improves the quality of life and the end‐of‐life experience for the children, adolescents, and their families. Methods and results The palliative care program works with the children and their families as main members of the team, providing medical services for pain and symptom alleviation, psycho‐social support, rehabilitation for the improvement of quality of life, and aid to secure the best physical conditions for the child at home or in temporary housing for the whole family. Conclusion The private‐public collaboration between the Chilean health system and the FNH is a successful model to help families suffering the devastating loss of a child.


| BACKGROUND
According to the comprehensive definition of the World Health Organization (WHO), palliative care for children "is the active total care of the child's body, mind, and spirit, and also involves giving support to the family… Effective palliative care requires a broad multidisciplinary approach that includes the family and makes use of available community resources; it can be successfully implemented even if resources are limited"(p. 13). 1  In Chile, where about 500 children are diagnosed with cancer every year, 5-year survival rates reach 78%. Still, 120 children will die either from advanced disease (80) or because of complications (40). 4 Good outcomes in pediatric cancer treatment and good quality care have been possible, thanks to the decisive commitment of the Chilean Government in declaring cancer and palliative care as a public health priority concern. Thus, developed the corresponding health policies 5 together with the public health insurance and strong alliances with NGOs to support all needs for children with cancer and their families.
Currently, around 78% of children diagnosed with cancer are treated in public hospitals while the rest attends the private sector. 6 Fundaci on Nuestros Hijos (FNH) is a nonprofit NGO supporting children and adolescents with cancer and their families through a comprehensive model with six programs: medical services, social services, hospital schools, rehabilitation, and palliative care. Mostly funded by private donors from civil society (individuals, business, and industry) and project-specific national grants, FNH has its own rehabilitation center for children with cancer (CROFNH), operating as a clinic for outpatient services located in the vicinity of the main hospitals. FNH works in partnership with public (5) and private (2) hospitals that attend childhood cancer. Within this alliance, its programs reach 75% of the children and adolescent with cancer in Chile.
With the purpose of solving needs not covered by the public national services, FNH has developed a complementary program of palliative care, which includes the provision of medical supplies, services and equipment, psychosocial services, and transitional housing in a palliative care house for children or adolescents until 24 years old.
The coordination with the pediatric oncology units in the hospitals is conducted by the specialized nurse who leads FNH's Medical Services Team.

| SERVICES OF THE PPC PROGRAM
When a patient is in need of any FNH service (not only palliative care), the treating physician sends the request to the Medical Services Team. The PPC program offers medical and supportive care and psychosocial services provided as needed for each patient. The whole program is designed to operate fluently and timely, with the treating team and the family coordinating their needs directly without having to deal with bureaucratic procedures, paperwork, or institutional transfers or rules.
When a child presents disease progression with no possibilities for a cure, the treating team at the hospital coordinates the referral to PPC. The child continues a palliative care protocol at the hospital, and is also incorporated in the PPC of the FNH. The FNH's nurse coordinator participates directly in coordination meetings as well as clinical care. She is the initial contact with newly referred families and provides initial counselling as well as support in the follow-up of the medical recommendations and prescriptions.  • Loans of medical equipment: Includes the loan of clinical cots, feeding pumps, portable oxygen, wheelchairs, among others. According to the needs, the equipment is given directly to the caregiver or delivered at their home, with monthly follow-ups from a services assistant.
• Medication: A basic stock of medications (analgesics, antibiotics, antiemetics, gastric protectors, among others) that are not provided at the hospital are available to be given to the patients upon medical prescription.
• Food supplements: Including nutritional formulas that supplement with vitamins, minerals, protein, and fat, the nourishment of children, and adolescents under nutritional risk. Every food supplement must be prescribed by the treating physician.
• Medical supplies: A wide variety of items like disposable morphine pumps or catheters must be prescribed by the treating physician. • Safe transfer: The child and caregiver are provided with safe and comfortable transportation either by private FNH transportation or hired taxi services to all the medical appointments and treatments. In some cases, FNH supplies with a voucher for transportation.
• Counselling: By professionals and volunteers, the caregivers are provided with support and guidance in the process of empowerment that their role requires, to help them cope with decision-making moments, while being self-compassionate about their journey and their situation.
• Wishes and recreation: Managed mainly through volunteer teams, wishes are granted preferably at early stages when the child has the most of his/her capacities to fully enjoy the experience like visiting places, shows, meeting celebrities, etc.
• Special situations: Through volunteer teams, special needs are covered when necessary, like financial help for food requirements, clothing, and so on.
• Mortuary fee: A fund of up to USD $168.00 is available to help families with the expenses following the child's death.
• Grieving parents group and workshops: After 2 weeks of the child's death, the nurse coordinator makes contact with the family and invites them to participate in the workshop. This is an event scheduled four times a year in which the parents tell and listen to their experiences, share food, and are given a commemoration gift made by former participant parents.
• Team's self-care: Building self-care capacities in the team in order to prevent burnout is an important aspect of the work philosophy. Several activities are programmed yearly, from formal workshops to informal gatherings and recreational sharing of time outside of the workspace and schedule. It is the intention to implement a more structured selfcare program for the emotional and mental health of the FNH team.

| Transition home
The palliative care house, or transition house, is a special service provided in the PPC program that has proven to be a pivotal component Volunteers from the PC team play an important role in daily life needs of the child and the family, offering company, play and crafts making, storytelling, trips and outdoor activities, integrative medicine, and spiritual support. If the child is also receiving care from the FNH Rehabilitation Centre, which is often the case, the specialists provide the therapy sessions in the house unless the child is in good physical condition to attend the center, in which case he/she and the caregiver are given transportation.

| Transition home experience
One of the many examples that show how these services are integrated into the care of the children is the story of Esteban, a 13-year-old boy diagnosed with acute lymphoblastic leukemia. His parents and his two brothers (28 and 25 years old) were devastated with the diagnosis and determined to do whatever it was necessary for his treatment and health.
They traveled from their 120 km distant home every time it was required for treatment. Unfortunately, Esteban relapsed twice and suffered an intracranial hemorrhage, which left him tracheostomized and with severe motor, visual, and speech impairments. He was referred to the PPC program. Although the family wanted to return home, they were extremely scared about all the procedures and care that they would have to do there, being so far away from the hospital. At this time, they were offered to stay in the transition house until they could feel safe enough to return home. During 4 weeks, the nurse and the rehabilitation team accompanied the parents in the procedures that they had to do until they felt safe.
This meant that they would be sure that the procedures were correctly done but also that their role as loving and careful caregivers was empowering them, instead of weakening their confidence.

| FINAL COMMENTS
The private-public collaboration between the Chilean health system and the FNH is a successful model to help families suffering a devastating loss from being overwhelmed with financial and bureaucratic problems that impede them from alleviating their child's suffering. It is important to remark that FNH has designed a program that complements clinical hospital care, adding benefits that allow families to meet their medical and financial needs. One of the most relevant aspects of this alliance is that it encourages the return of children and adolescents to their homes with their parents through strengthening the skills of caregivers and the delivery of medical and social services.
The transition house is the best example of the two main charac- Regardless of all the advances described, and although the model presented is efficient, it is necessary to make progress in expanding the availability of home care teams and the existence of transition houses in other parts of the country, with the aim of bringing services closer to people. This challenge will require the participation of the state, FNH, and other social organizations and all health establishments, particularly those primary care teams in each city.

ACKNOWLEDGMENTS
We thank the oncology and palliative care teams of the PINDA hospitals for their permanent commitment and devoted team work with FNH.

CONFLICT OF INTEREST
The authors have stated explicitly that there are no conflicts of interest in connection with this article.

AUTHOR CONTRIBUTIONS
All authors had full access to the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis.

ETHICAL STATEMENT
Statistics in this manuscript are based on internal data of the FNH and do not involve patient's identification or other sensitive information.
No ethical clearance was required.

DATA AVAILABILITY STATEMENT
Data sharing is not applicable to this article as no new data were created or analyzed in this study.