Advancing pediatric palliative care in a low-middle income country: an implementation study, a challenging but not impossible task

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 and a moral imperative [6].

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 worldwide which mainly affects low- and middle-income countries (LMICs) 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, the generalized provision of healthcare in Latin America has focused on improving access to specialized adult services [10]. This results in an untrained health workforce in the field of pediatrics and a lack of PPC services to address the current need [11].

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 Surveillance 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) for the introduction of 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.

Two approaches were followed to describe the outcomes of the program. First, a categorization of the strategies was conducted to assist with its implementation, and second, descriptive statistics were used to describe the program’s outcomes.

The program has focused on an unaddressed gap, the provision of PPC for children in Cali. It has improved referral times, coordination of care, availability of 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.

Establishing a PC team with skills, training, and exclusive activity assistance for the pediatric population was a crucial element to expand PPC demand for children with complex chronic diseases and to increase the program demand a three-fold compared with the previous year. As described in the Children’s Hospital of Eastern Ontario, Ottawa, a significant increase in patient referrals was associated with the inclusion of social work resources and experienced PC physicians [31]. Additionally, Education was key for the progressive growth of the program [32] and could be a strategy to lower resistance from healthcare professionals, since this has been described to be a barrier [33].

When using the theory-based method description applied to our TCY program implementation, we recognized the program has focused on advancing individual professional and groups of professionals in their capacities and competencies and on generating organizational change to find a niche within the hospital without influencing policy. Small changes at the policy level can be accounted for by the definition of specific PPC roles and settings for patient care.

Disease prevalence at the moment of referral to the program displayed the most frequent diagnoses in oncological and non-oncological groups were neurological, similar to other implementation studies carried out worldwide [34]. We corroborate that children with neurological conditions, even if not progressive, experience high distress due to symptom control difficulties [32, 35], the high burden associated with care [36, 37], and potential complications that could cause premature death [32, 34], pointing out the important role a PC team plays in the multidisciplinary management of these patients.

Referral causes regarding our PPC program were associated with supporting decisions around withholding or withdrawing treatment, and end-of-life care, especially in the NICU and the PICU services, with an average time from referral until death of 12 days. This underlines late integration of PPC in the wide and varied conditions susceptible to the service. 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 [38]. Highlighting children are still not being referred to PC until mere days before death, not in line with recommendations from the WHO and other organizations [39] that recommend PPC to be provided after diagnosis of life-threatening diseases, which in turn could result in less aggressive care and better outcomes at the end-of-life [40].

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%). 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.

The creation of a specialized PPC service increases patient referrals and favors a comprehensive approach to patients with life-threatening and limiting conditions in a general hospital. Institutional support, philanthropic support, awareness, and education are essential for the viability and impact of PPC programs. There are still many opportunities for improvement, such as the referral time and death of patients, the creation of a pediatric hospice, and improving the bereaved follow up, among others. The implementation of a PPC program in Colombia is a difficult but not impossible task to accomplish. With this paper, we hope that other PPC programs can be strengthened or new ones can be created in Latin America and the Caribbean.