The prevalence of complex life-threatening diseases in children has increased significantly worldwide(1,2). In the United Kingdom, the prevalence of limiting and life-threatening diseases increased from 12 per 10,000 population in 2003 to 16 per 10,000 by 2007(3,4). The prevalence of these diseases in Latin America is still to be determined since there is still a lack of information. The World Health Organization (WHO) stated that such conditions could benefit from the palliative care (PC) approach(5). In this light, the burden of these diseases and thus the need for PC becomes a growing necessity for healthcare systems worldwide(6) and a moral imperative.
A recent regional study assessing the development of pediatric palliative care (PPC) in Europe estimated that approximately 150,000 children need PPC every year(7). The region offers a total of 680 services to address the need, of which 133 are hospices, 385 are home-care services and 162 are hospital services(7). The statistics about PC need are expected to be larger in Latin America due to the health inequalities that the region faces. The Lancet Commission on Palliative Care reported an unaddressed lack of access to PC and pain relief globally, which affects low- and middle-income countries (LMICs) starkly(8) where the provision for PPC and pain relief are estimated to be neglected(8). A systematic review reported that 66.7% of the countries in South America did not have any PPC activity until 2011, when the first integrated PPC service was documented(9). The field of PC has continued to develop and become an active area of research and advocacy. Even though a new definition of the concept is available(10), the generalized provision of healthcare in Latin America has focused on improving access to specialized adult services. This results in an untrained health workforce in the field of pediatrics(11) and a lack of PPC services to address the current need.
The 2012 Atlas of Palliative Care in Latin America reported Colombia as having four hospice-type residencies, only one second-level service, and 13 tertiary care units that serve both adults and children(12). There are still no available data regarding the national need for PC; however, according to the Childhood Cancer Outcomes Surveilance System (VIGICANCER), the incident rate of pediatric cancer from 1977 to 2011 is comparable with affluent countries.(13)
To date, national PC services are estimated to have grown almost 500% in the past 5 years. However, developing PPC in Colombia requires overcoming even greater barriers than for adults, mainly due to the absence of PC academic training programs for pediatricians and the lack of related educational objectives for other healthcare professionals(9,14).
In light of the pressing need to promote PPC in Latin America and considering the characteristics of PPC in Colombia based on the recommendations from the American Academy of Pediatrics (AAP), the Institute of Medicine (IoM), and the International Meeting for Palliative Care in Children’s Trento (IMPaCCT) to introduce PPC teams(12,15,16), the objective of this paper is to report the process of implementing the PPC program “Taking Care of You” (TCY) in the city of Cali in Colombia. As with other LMIC health inequalities and a lack of scientific literature on the subject, Cali represents a context where promoting PPC might seem to be an impossible task. This article reflects on the strategies attempted for developing a multidisciplinary program that could provide coordinated care and symptom management to children with life-threatening and limiting conditions, geared toward reducing suffering and improving patients and families’ quality of life.
Geographic and demographic context
Colombia has a population of 48,258,494 inhabitants, 51.2% of the population is female, and 22.6% are between 0 and 14 years of age(17). Cali is a city with 2.5 million inhabitants(18). There is limited data available regarding the number of pediatric patients with a need for PC or PPC services available in the country; however, the age-standardized annual incidence rate of childhood cancer in Cali from 1977 to 2011 was 141 cases per million. (13,19).
Colombian legal framework for PC regulation
Since 2014, the country has passed relevant measures related to PPC regulation. Important milestones include the regulation of services in the country, including those aimed at the pediatric population(20), guidelines for inclusive care in PC, differentiating attention for adults and children(21), specific standards for Children Cancer Care Units (CCCU) where PC and pain treatment must be guaranteed from the beginning of treatment(22), a cancer control plan with a mention of PC(23), and regulating the process of dignifying death for children and adolescents, allowing euthanasia(24). (Colombian regulatory framework is summarized in Appendix 1 under supplementary data)
The program “Taking Care of You”
The program operates in the Fundacion Valle del Lili, a nonprofit university hospital that functions as a referral center for the southwestern region of Colombia. It has 177 pediatric beds and cares for approximately 50,000 children annually.
Our institution has a general PC program that has operated since 2007 and is led by family medicine physicians, with a multidisciplinary team. The general PC program has attended to the entire population, including children until late 2017, when the specialized PC program for pediatric patients called Taking Care of You (TCY) was launched, led by a pediatrician with a team that included a family medicine physician, a nurse, a social worker, and a psychologist.
The main objective of the program is to provide coordinated, multidisciplinary and humanized care to promote quality of life for patients under the age of 18 with life-threatening and limiting conditions in any hospital care service (emergency room, hospital room, pediatric intensive care unit (PICU), neonatal intensive care unit (NICU), and outpatient setting). Patients are treated through an inter-consultation or first-time assessment by the multidisciplinary PPC team.
This multidisciplinary team designed exclusive approaches for the pediatric population providing coordination of care, support in clinical decision-making, facilitated communication, pain and other symptom management, advanced care planning, end of life care, and bereavement follow up(25), among others that will be described later.
To fulfill the baseline program goals and objectives, an eight-step strategy was implemented. This included education and awareness in PPC (a question-based strategy, summarized in Appendix 2 under supplementary data), institutional support, the participation of the PPC team in academic and healthcare activities, advocacy with other actors in the healthcare system, capacity building in PPC, the formation of a multidisciplinary team led by a pediatrician with training in PPC, and research that is described in Table 1.