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 Garcia-Quintero et al. BMC Palliative Care _#####################_
https://doi.org/10.1186/s12904-020-00674-2

1 RESEARCH ARTICLE Open Access

Q1 2 Advancing pediatric palliative care in a low-

3 middle income country: an implementation
4 study, a challenging but not impossible task
Q2 5 Ximena Garcia-Quintero1*, Luis Gabriel Parra-Lara2,3, Angelica Claros-Hulbert1,2, Maria Isabel Cuervo-Suarez1,
789160
12
11 Wendy Gomez-Garcia4, Francois Desbrandes5 and Natalia Arias-Casais6

13 Abstract
14 Background: The disparities in access to pediatric palliative care and pain management in Latin America remains
15 an unaddressed global health issue. Efforts to improve the development of Palliative Care (PC) provision have
16 traditionally targeted services for adults, leaving the pediatric population unaddressed. Examples of such services
17 are scarce and should be portrayed in scientific literature to inform decision-makers and service providers on
18 models of care available to tackle the burden of Pediatric Palliative Care (PPC) in Low-and middle-income countries
19 (LMIC). The purpose of this study is to describe the implementation of a pediatric palliative care program, “Taking
20 Care of You” (TCY), in a tertiary care, university hospital in Cali, Colombia.
21 Methods: A program’s database was built with children between 0 to 18 years old and their families, from year
22 2017 to 2019. Descriptive analysis was carried out to evaluate the impact of the program and service delivery. A
23 theory-based method was directed to describe the PPC program, according to the implementation of self-designed
24 taxonomy, mapping theoretical levels and domains. Clinical outcomes in patients were included in the analysis.
25 Results: Since 2017 the program has provided PPC services to 1.965 children. Most of them had an oncologic
26 diagnosis and were referred from hospitalization services (53%). The number of ambulatory patients increased by
27 80% every trimester between 2017 and 2018. A 50% increase was reported in hospitalization, emergency, and
28 intensive care units during the same time period.
29 Conclusions: The program addressed a gap in the provision of PPC to children in Cali. It shows effective strategies
30 used to implement a PPC program and how the referral times, coordination of care, communication with other
31 hospital services were improved while providing compassionate/holistic care to children with life-limiting and
32 threatening diseases and in end-of-life. The implementation of this program has required the onset of specific
33 strategies and arrangements to promote awareness and education proving it a hard task, yet not impossible.
34 Keywords: Pediatric, Pediatric palliative care, Program, Palliative medicine, Implementation, Terminal care, Latin
America
35

* Correspondence: ximena.garcia@fvl.org.co
Q3 1
Fundación Valle del Lili, Department of Pediatric Palliative Care Program, Cra
98 # 18 -49, Cali 760032, Colombia
Full list of author information is available at the end of the article

© The Author(s). 2020 Open Access This article is licensed under a Creative Commons Attribution 4.0 International License,
which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give
appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if
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licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain
permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/.
The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the
data made available in this article, unless otherwise stated in a credit line to the data.
 Garcia-Quintero et al. BMC Palliative Care _#####################_ Page 2 of 11

Q5 36 Background In light of the pressing need to promote PPC in Latin 90

37 The prevalence of complex life-threatening diseases in America and considering the characteristics of PPC in 91
38 children has increased significantly worldwide [1, 2]. In Colombia based on the recommendations from the 92
39 the United Kingdom, the prevalence of limiting and life- American Academy of Pediatrics (AAP), the Institute of 93
40 threatening diseases increased from 12 per 10,000 popu- Medicine (IoM), and the International Meeting for Pal- 94
41 lation in 2003 to 16 per 10,000 by 2007 [3, 4]. The liative Care in Children’s Trento (IMPaCCT) for the 95
42 prevalence of these diseases in Latin America is still to introduction of PPC teams [12, 15, 16], the objective of 96
43 be determined since there is still a lack of information. this paper is to report the process of implementing the 97
44 The World Health Organization (WHO) stated that PPC program “Taking Care of You” (TCY) in the city of 98
45 such conditions could benefit from the palliative care Cali in Colombia. As with other LMIC health inequal- 99
46 (PC) approach [5]. In this light, the burden of these dis- ities and a lack of scientific literature on the subject, Cali 100
47 eases and thus the need for PC becomes a growing ne- represents a context where promoting PPC might seem 101
48 cessity for healthcare systems worldwide and a moral to be an impossible task. This article reflects on the 102
49 imperative [6]. strategies attempted for developing a multidisciplinary 103
50 A recent regional study assessing the development of program that could provide coordinated care and symp- 104
51 pediatric palliative care (PPC) in Europe estimated that tom management to children with life-threatening and 105
52 approximately 150,000 children need PPC every year [7]. limiting conditions, geared toward reducing suffering 106
53 The region offers a total of 680 services to address the and improving patients and families’ quality of life. 107
54 need, of which 133 are hospices, 385 are home-care ser-
55 vices and 162 are hospital services [7]. The statistics Contextual factors 108
56 about PC need are expected to be larger in Latin Amer- Geographic and demographic context 109
57 ica due to the health inequalities that the region faces. Colombia has a population of 48,258,494 inhabitants, 110
58 The Lancet Commission on Palliative Care reported an 51.2% of the population is female, and 22.6% are be- 111
59 unaddressed lack of access to PC and pain relief world- tween 0 and 14 years of age [17]. Cali is a city with 2.5 112
60 wide which mainly affects low- and middle-income million inhabitants [18]. There is limited data available 113
61 countries (LMICs) where the provision for PPC and pain regarding the number of pediatric patients with a need 114
62 relief are estimated to be neglected [8]. A systematic re- for PC or PPC services available in the country; however, 115
63 view reported that 66.7% of the countries in South the age-standardized annual incidence rate of childhood 116
64 America did not have any PPC activity until 2011, when cancer in Cali from 1977 to 2011 was 141 cases per mil- 117
65 the first integrated PPC service was documented [9]. lion [13, 19]. 118
66 The field of PC has continued to develop and become
67 an active area of research and advocacy. Even though a Colombian legal framework for PC regulation 119
68 new definition of the concept is available, the general- Since 2014, the country has passed relevant measures re- 120
69 ized provision of healthcare in Latin America has fo- lated to PPC regulation. Important milestones include 121
70 cused on improving access to specialized adult services the regulation of services in the country, including those 122
71 [10]. This results in an untrained health workforce in aimed at the pediatric population [20], guidelines for in- 123
72 the field of pediatrics and a lack of PPC services to ad- clusive care in PC, differentiating attention for adults 124
73 dress the current need [11]. and children [21], specific standards for Children Cancer 125
74 The 2012 Atlas of Palliative Care in Latin America re- Care Units (CCCU) where PC and pain treatment must 126
75 ported Colombia as having four hospice-type residencies, be guaranteed from the beginning of treatment [22], a 127
76 only one second-level service, and 13 tertiary care units cancer control plan with a mention of PC [23], and 128
77 that serve both adults and children [12]. There are still regulating the process of dignifying death for children 129
78 no available data regarding the national need for PC; and adolescents, allowing euthanasia [24]. (Colombian 130
79 however, according to the Childhood Cancer Outcomes regulatory framework is summarized in Appendix 1 131
80 Surveillance System (VIGICANCER), the incident rate of under supplementary data). 132
81 pediatric cancer from 1977 to 2011 is comparable with
82 affluent countries [13]. The program “Taking Care of You” 133
83 To date, national PC services are estimated to have The program operates in the Fundación Valle del Lili, a 134
84 grown almost 500% in the past 5 years. However, devel- nonprofit, teaching hospital that functions as a referral 135
85 oping PPC in Colombia requires overcoming even center for the southwestern region of Colombia. It has 136
86 greater barriers than for adults, mainly due to the ab- 177 pediatric beds and cares for approximately 50,000 137
87 sence of PC academic training programs for pediatri- children annually. 138
88 cians and the lack of related educational objectives for Our institution has a general PC program that has op- 139
89 other healthcare professionals [9, 14]. erated since 2007 and is led by family medicine 140
 Garcia-Quintero et al. BMC Palliative Care _#####################_ Page 3 of 11

141 physicians with a multidisciplinary team. The general PC and bereavement follow up [25], among others that will 162
142 program had served the entire population including chil- be described later. 163
143 dren until late 2017, when the specialized PC program
144 for pediatric patients called Taking Care of You (TCY) Program strategies 164
145 was launched. TCY is led by a pediatrician with a team To fulfill the baseline program goals and objectives, an 165
146 that includes a family medicine physician, a nurse, a so- eight-step strategy was implemented. This included edu- 166
147 cial worker, and a psychologist. cation and awareness in PPC (a question-based strategy, 167
148 The main objective of the program is to provide summarized in Appendix 2 under supplementary data), 168
149 coordinated, multidisciplinary and humanized care institutional support, the participation of the PPC team 169
150 to promote quality of life for patients under the age in academic and healthcare activities, advocacy with 170
151 of 18 with life-threatening and limiting conditions other actors in the healthcare system, capacity building 171
152 in any hospital care service [emergency room, hos- in PPC, the formation of a multidisciplinary team led by 172
153 pital room, pediatric intensive care unit (PICU), a pediatrician with training in PPC, and research that is 173
154 neonatal intensive care unit (NICU), and outpatient described in Table 1. 174 T1
155 setting]. Patients are treated through an inter-
156 consultation or first-time assessment by the multi- Methods 175
157 disciplinary PPC team. Two approaches were followed to describe the outcomes 176
158 This multidisciplinary team is designed to provide co- of the program. First, a categorization of the strategies 177
159 ordination of care, support in clinical decision-making, was conducted to assist with its implementation, and 178
160 facilitated communication, pain and other symptom second, descriptive statistics were used to describe the 179
161 management, advanced care planning, end of life care, program’s outcomes. 180

Q6t1:1 Table 1 Eight-step implementation strategy

t1:2 Strategies Objective Setting Deliverable
t1:3 Education Inform healthcare providers, families, Hospitalization, emergency, PICU, Educational discussion meetings,
health care professionals in order to raise NICU, CCU conferences for caregivers, patients, and
awareness families.
t1:4 Institutional To establish collaborative support Board of directors Reports and meetings that showed the
t1:5 Support between board directors/decision-makers Education committee enhancement of humanized care,
and PPC program leader Management committee improvement in patient experience and
healthcare personnel experience, health
outcomes, and finally resource optimization.
t1:6 Academic To educate HCW in PPC and its impact in All HCW from hospitalization, PICU, Meetings
t1:7 Support the healthcare services NICU, CCU, BMTU Conferences
Workshops
Educational material
t1:8 Advocacy With To promote PPC with healthcare health insurance, scientific Boards
t1:9 Other Actors In authorities, scientific societies, the associations, patient associations, Meetings
t1:10 The Health academic community, and stakeholders national palliative care scientific Conferences,
t1:11 System associations, territorial health entities Diplomacy
t1:12 Capacity To train and educate the TCY program Postgraduate education: Master’s degree
t1:13 Building team in PPC -Universidad Internacional de La Rioja Palliative care education and practice
Continued education: course
-Harvard Medical School courses
t1:14 Multidisciplinary To organize a multidisciplinary team in FVL Inclusion of different healthcare workers
t1:15 Team PPC that guarantees a comprehensive and including a psychologist, social worker,
holistic approach for the patient and their nurse, and spiritual counselor
family needs
t1:16 Specialized To guarantee a comprehensive approach FVL, Pediatrician leader, Department A physician with specific training in
t1:17 Pediatric Team to the pediatric medical conditions in PC of Palliative Care pediatrics and PPC
t1:18 Leader
t1:19 Research To create an information system that FVL PPC research group
characterizes the population and identifies Support of research assistant
clinical, economic, and social problems
that may contribute to solving scientific
gaps and support multilevel decision-
making.
t1:20 BMTU Bone Marrow Transplant Unit, HCW Healthcare Workers, PPC Pediatric Palliative Care, CCU Children Cancer Units, PICU Pediatric Intensive Care Unit, NICU
t1:21 Neonatal Intensive Care Unit, TCY “Taking Care of You”, FVL Fundacion Valle del Lili
 Garcia-Quintero et al. BMC Palliative Care _#####################_ Page 4 of 11

181 Mapping implementation strategies materials, PPC subjects in the grand rounds, clinical case 232
182 A theory-based method was applied to describe the im- discussions, among others. 233
183 plementation process of our program. The approach was
184 based on the Poot et al. article [26] where a matrix was Results 234
185 retrospectively developed from descriptive frameworks. Coverage 235
186 To analyze and display the strategies implemented, a Since the beginning of the program in 2017, a total of 236
187 matrix exercise was performed. 1965 children have been referred. In 2017, before the 237
specific PPC program was created, 146 pediatric patients 238
188 Strategies of the program TCY in the matrix were assessed by the general PC team, whereas in 2019, 239
189 The strategies were categorized retrospectively with the 1 year after the start of the “Taking Care of You” pro- 240
190 Cochrane Effective Practice and Organization of Care gram, 771 children were assessed in the pediatric in- 241
191 (EPOC) [27, 28], Review Group Taxonomy 2015 [28], patient services and 324 new patients were assessed in 242
192 and grouped into the categories and subcategories: Im- the outpatient setting of the hospital. This represents an 243
193 plementation Strategies, Financial arrangements and De- 81 and 93% increase PPC demand in the inpatient and 244
T2 194 livery arrangements Table 2. outpatient services, respectively (see Figs. 1 and 2). 245 F1 F2
195 The matrix combines two frameworks: first, levels of A relevant aspect in the program development was 246
196 organization influenced by the implementation [29], and making a strategic alliance with the PICU and the 247
197 second, the domains of implementation [30] to provide a pediatric oncology unit, which favored early integration 248
198 comprehensive matrix where defined project activities of the PPC team in the unit’s activities and allowed sup- 249
199 can be positioned according to their intended target do- port in decision-making to promote patient quality of 250
200 main and level, facilitating a structured description of life. This also allows continuity of care, interdisciplinary 251
201 the project [26, 29]. The matrix displays the implemen- communication, and therapeutic adherence. 252
202 tation strategies, Financial arrangements, and delivery
203 arrangements. Different sources of information were
204 cross-referenced in a database to improve the quality of Disease prevalence at the moment of referral to the 253
205 the information. program 254
Patients referred to the program were classified as onco- 255

206 Program outcomes

logical and non-oncological. We found a similar propor- 256
207 A descriptive analysis of the variables was performed tion in both categories, including inpatient and 257
208 using the program’s administrative registry, no clinical outpatient care. In our institution, the most frequent 258

209 chart review took place, nonetheless, this study was sub- oncological clinical conditions were central nervous sys- 259
210 mitted to the Institutional Research Board (IRB) and tem tumors (53%) (mainly medulloblastoma and low- 260
211 Ethical Committee. The results were reported using and high-grade gliomas), followed by bone tumors (26%) 261

212 measures of central tendency and dispersion, according (Osteosarcoma and Ewing’s sarcoma). On the other 262
213 to data distribution. Categorical variables were summa- hand, non-oncological conditions were mainly related to 263
214 rized as percentages. The variables analyzed included a severe neurological compromise in 38% of the cases (in- 264

215 detailed analysis of the children served and the referral cluding congenital malformations and chromosomal ab- 265
216 service, type of pathologies (i.e., oncologic vs nononcolo- normalities, such as trisomy’s, microcephaly, cerebral 266
217 gic), and place of death per year. All analyses were per- palsy), followed by inherited muscle disorders and rare 267

218 formed using Microsoft Excel 2016. Information from diseases. 268
219 referral motive was gathered as part of an internal ad-
220 ministrative process through an online survey (Appendix Cause of referral 269
221 3 provided in supplementary data). No literature search The main causes for referral in outpatient and inpatient 270
222 took place, but it did undergo IRB and Ethical Commit- setting was support during therapeutic withholding and 271
223 tee review. withdrawal of a treatment that was already established 272
(89%), followed by end-of-life care (86%), Communica- 273
224 Education strategies tion support (70%), Pain and symptom control (69%), 274
225 There were continuous educational activities in the Psychosocial support (67%), Decision-making support 275
226 pediatric units that emphasized on the importance and (63%), and Health Care coordination (57%). The most 276
227 health benefits from the early referral of children with frequent reasons for referral to the PPC program by de- 277
228 limiting and life-threatening conditions to PPC, advan- partments are summarized in Table 3, the majority came 278 T3
229 cing to the progressive growth of the program. Educa- from the pediatric inpatient ward (52%) and the PICU 279
230 tional activities include PPC and pain management (23%). The median time from referral to death was 12 280
231 workshops, communication role play games, printed days, with an interquartile range of 2 to 61 days. 281
 Garcia-Quintero et al. BMC Palliative Care _#####################_ Page 5 of 11

t2:1 Table 2 Effective Practice and Organisation of Care (EPOC) Taxonomy “Implementation Strategies” and “Financial Arrangements”
Q7t2:2 Fitting the “Taking Care of You” (TCY) Program Strategy and Objectives
t2:3 Subcategory TCY strategy Strategy objective
t2:4 Implementation Strategies
t2:5 Interventions designed to bring about changes in healthcare organizations, the behavior of healthcare professionals or the use of health services by
t2:6 healthcare recipients
t2:7 Category: Interventions targeted at healthcare workers
t2:8 A. Communities of Local advocacy to convene capacity building Train a specialized PPC team through graduate
t2:9 Practice programs abroad
t2:10 B. Educational Design and create written, and online evidence-based information Supply healthcare professionals with key objective
t2:11 Materials material topics and information on PPC
t2:12 C. Educational Local, and national educational courses and workshops Create a successful method to favor mass training
t2:13 Meetings and raising awareness on PPC approach and
principles for healthcare professionals
t2:14 D. Coach national multidisciplinary courses and participation in Increase national multidisciplinary knowledge on
t2:15 Interprofessional postgraduate university courses palliative philosophy
t2:16 Education
t2:17 E. Patient- Medical, psychological and social work evaluation of the patient and Provide a psychosocial and medical perspective of
t2:18 Mediated family to discuss as part of multidisciplinary medical board meetings the patient and family prior to multidisciplinary
t2:19 Interventions decision-making meetings
t2:20 Financial Arrangements
t2:21 Changes in how funds are collected, insurance schemes, how services are purchased, and the use of targeted financial incentives or disincentives
t2:22 Category: Collection of funds
t2:23 F. External Apply for funding through a research grant Promote and sustain pediatric palliative care in a
t2:24 Funding middle-income country
t2:25 Category: Insurance schemes
t2:26 G. Community- Held Advocacy Reunions with health care providers locally Lower access barriers for patients and families of
t2:27 Based Health MIC
t2:28 Insurance
t2:29 Category: Mechanisms for the payment of health services
t2:30 H. Payment Reunions with the board of directors and decision-makers emphasizing Obtain institutional support to consolidate the team
t2:31 Methods for Health the added value of PPC, based on enhancing patient and family satis- and decrease the access barrier
t2:32 Workers faction, patient experience, health humanization, and resource
optimization
t2:33 Delivery Arrangements
t2:34 Changes in how, when, and where healthcare is organized and delivered, and who delivers healthcare.
t2:35 Category: Where care is provided and changes to the healthcare environment
t2:36 I. Site of service Promote patient attention in the outpatient scenario through medical Since most of the patients are referred to the
t2:37 delivery order program from hospitalization, we make sure they
can continue attention in the outpatient ward
t2:38 Category: Who provides care and how the healthcare workforce is managed
t2:39 J. Role expansion Coached local interdisciplinary team meetings, educational meetings Guide the conformation of the Pediatric Palliative
t2:40 or task shifting among the general PC group. Care team
t2:41 Category: Coordination of care and management of care processes
t2:42 K. Care pathways Held institutional multidisciplinary meetings with local health care Contextualize life-limiting-and-threatening disease
providers
t2:43 L. Case Participated in multidisciplinary board meetings with treating specialist Coordinate and guarantee an integrative followup
t2:44 management and several homecare services to improve patients care
t2:45 M. Communication Coached local interdisciplinary team meetings, support for clinical Facilitating and establishing communication and
t2:46 between providers improvement plans of the team and regional educational meetings developing an improved dialogue.
t2:47 N. Continuity of While in hospitalization we hold medical board meetings with Ensuring the responsibility of care and bereavement
t2:48 care interdisciplinary teams and promote continuity through outpatient followup
setting followup
t2:49 O. Disease Coached educational team meetings, regional meetings with health Promote adequate quality of life during the health-
t2:50 management care professionals and healthcare providers disease-attention process
t2:51 P. Patient-initiated Providing phone advisory 24 h 7 days a week Around-the-clock availability for care consultation to
 Garcia-Quintero et al. BMC Palliative Care _#####################_ Page 6 of 11

Table 2 Effective Practice and Organisation of Care (EPOC) Taxonomy “Implementation Strategies” and “Financial Arrangements”
Q7 Fitting the “Taking Care of You” (TCY) Program Strategy and Objectives (Continued)
t2:54 Subcategory TCY strategy Strategy objective
t2:52 appointment direction the family and bereavement care
t2:53 systems
t2:54 Q. Referral Coached educational sessions with the hospital’s pediatric departments Educating about the importance of involving
t2:55 systems comprehensive care and patients with complex
chronic diseases who are candidates for referral to
the PPC team
t2:56 R. Shared decision- Meetings and constant communication is held with TCYteam, treating Establish individualized management goals
t2:57 making specialist and the family
t2:58 S. Teams Coached local interdisciplinary team meetings, support for clinical Establishing a multidisciplinary team that provides
improvement plans, and regional educational meetings organizational status, coordinated care, and
capability based on individualized relevance and
effectivity
t2:59 T. Transition of Interdisciplinary meetings between treating specialist, our team and Provide objective information to the family when a
t2:60 Care the family patient’s treatment changes from curative to
palliative
t2:61 PPC Pediatric Palliative Care, MIC Middle Income Country, TCY “Taking Care of You”, MIC Middle-Income countries

282 Place of death and bereavement follow-up Strategies 295

283 The place of death of most of the patients was the hospital Figure 3 shows the integration of the EPOC categories 296 F3
T4 284 Table 4. Eleven percent of the relatives attended the be- on a single matrix displaying the categorization for the 297
285 reavement workshops in the 2017–2018 time period and domains: implementation strategies, financial arrange- 298
286 25% in the 2018–2019 time period. The TCY program ac- ments, and delivery arrangements. The program has fo- 299
287 companied bereavement of parents and families through, cused on advancing in educational and professional 300
288 follow-up calls, sending condolence letters, and bereave- interaction, through promoting communication between 301
289 ment support groups, with a symbolic butterfly release in interdisciplinary teams. Second, it aimed on developing 302
290 addition to psychological interventions. organizational change by task shifting, promoting incen- 303
291 The program has had around-the-clock availability, it tives and resources and pursuing change in social, polit- 304
292 received 81 phone calls in 2018 and 244 phone calls in ical and legal frameworks. The program has not stressed 305
293 2019, related to symptom management (58%) and care change at a policy level, though small changes have been 306
294 coordination (42%). reported at generating specific roles for the program, 307

Q4f1:1 Fig. 1 Comparison of the number of patients assessed by the PPC program in the outpatient setting between 2017 and 2019. PPC Pediatric
f1:2 Palliative Care
f1:3
 Garcia-Quintero et al. BMC Palliative Care _#####################_ Page 7 of 11

f2:1 Fig. 2 Comparison of the number of Inpatients referred to the program from 2017 to 2019. PPC Pediatric Palliative Care
f2:2

308 determining the site of services and providing disease with complex chronic diseases and to increase the pro- 325
309 management specifically from a PPC perspective. gram demand a three-fold compared with the previous 326
year. As described in the Children’s Hospital of Eastern 327
310 Discussion Ontario, Ottawa, a significant increase in patient refer- 328
311 The program has focused on an unaddressed gap, the rals was associated with the inclusion of social work 329
312 provision of PPC for children in Cali. It has improved resources and experienced PC physicians [31]. Addition- 330
313 referral times, coordination of care, availability of com- ally, Education was key for the progressive growth of the 331
314 passionate/holistic care to children with limiting and program [32] and could be a strategy to lower resistance 332
315 life-threatening diseases, and end-of-life care. The imple- from healthcare professionals, since this has been de- 333
316 mentation of this program has required the onset of spe- scribed to be a barrier [33]. 334
317 cific strategies and arrangements to promote awareness When using the theory-based method description ap- 335
318 and education, which has been a difficult task. With this plied to our TCY program implementation, we recog- 336
319 implementation experience, we intend to contribute to nized the program has focused on advancing individual 337
320 the PC philosophy in pediatric patients’ care and hope it professional and groups of professionals in their capaci- 338
321 serves as a model for other regions and countries. ties and competencies and on generating organizational 339
322 Establishing a PC team with skills, training, and exclu- change to find a niche within the hospital without influ- 340
323 sive activity assistance for the pediatric population was a encing policy. Small changes at the policy level can be 341
324 crucial element to expand PPC demand for children accounted for by the definition of specific PPC roles and 342
settings for patient care. 343
Disease prevalence at the moment of referral to the pro- 344
t3:1 Table 3 Pediatric Patient Referral by Departments
gram displayed the most frequent diagnoses in oncological 345
t3:2 Pediatric Patient Referral by Departments
and non-oncological groups were neurological, similar to 346
t3:3 Department 2017 2018 2019 Total
other implementation studies carried out worldwide [34]. 347
t3:4 n % n % n % n % We corroborate that children with neurological condi- 348
t3:5 Hospitalization 4 40.0% 398 50.0% 634 52.5% 1036 52.7% tions, even if not progressive, experience high distress due 349
t3:6 Pediatric ICU – – 192 19.5% 266 14.6% 458 23% to symptom control difficulties [32, 35], the high burden 350
t3:7 Pediatric 5 50.0% 126 15.6% 150 12.7% 281 14.3% associated with care [36, 37], and potential complications 351
t3:8 Emergency that could cause premature death [32, 34], pointing out 352
t3:9 room
the important role a PC team plays in the multidisciplin- 353
t3:10 Neonatal ICU 1 10.0% 61 7.7% 87 7.5% 149 7.6% ary management of these patients. 354
t3:11 Bone Marrow – – 13 1.6% 28 2.4% 41 2.1% Referral causes regarding our PPC program were asso- 355
t3:12 Transplant ciated with supporting decisions around withholding or 356
t3:13 Total general 10 100% 790 100% 1165 100% 1965 100% withdrawing treatment, and end-of-life care, especially in 357
t3:14 ICU Intensive Care Unit the NICU and the PICU services, with an average time 358
 Garcia-Quintero et al. BMC Palliative Care _#####################_ Page 8 of 11

t4:1 Table 4 Place of death and bereavement workshop attendance comparison per year
t4:2 Place of death Total 2017a 2018b 2019
n = 288 n = 57 n = 111 n = 120
t4:3 Emergency 24 2 11 11
t4:4 Hospitalization 215 39 83 93
t4:5 Another health institution 14 3 1 10
t4:6 Home 35 13 16 6
t4:7 Attendance to bereavement workshop 79 6 12 61
a
t4:8 General PC program
t4:9 b
Start of the PPC program

359 from referral until death of 12 days. This underlines late referral to death was 4.4 months [38]. Highlighting chil- 364
360 integration of PPC in the wide and varied conditions dren are still not being referred to PC until mere days 365
361 susceptible to the service. In the largest retrospective before death, not in line with recommendations from 366
362 medical record review for a PPC population in the US the WHO and other organizations [39] that recommend 367
363 by Thrane et al., they evidenced that the time from PPC to be provided after diagnosis of life-threatening 368

f3:1 Fig. 3 Integration of the EPOC categories “Implementation Strategy”, “Financial Arrangements ”, “Delivery Arrangements” in the matrix of targeted
f3:2 “levels of organization” and “Domains of implementation”. Note EPOC: Effective Practice and Organization of Care
f3:3
 Garcia-Quintero et al. BMC Palliative Care _#####################_ Page 9 of 11

369 diseases, which in turn could result in less aggressive to-obtain authorization from their health entity to re- 421
370 care and better outcomes at the end-of-life [40]. ceive specialized care, such as PPC. 422
371 The global trend is to promote death at home with Despite these limitations, our implementation model 423
372 patient-family comfort and support measures [41]; how- could be an example to mitigate gaps in the PPC service 424
373 ever, in pediatrics, multiple difficulties arise when trying for Latin America and the Caribbean, where availability 425
374 to promote this measure, and the hospital scenario is the and access to a PPC team are scarce. 426
375 most frequent place of death [42]. Our team recognized
376 the same difficulty, and most of our patients (74%) died Conclusions 427
377 in the hospital. Some of the barriers identified in favor- The creation of a specialized PPC service increases pa- 428
378 ing end-of-life care at home were related to fear from tient referrals and favors a comprehensive approach to 429
379 parents or caregivers to face the death of their child patients with life-threatening and limiting conditions in 430
380 alone, the high attention needs of a patient at the end- a general hospital. Institutional support, philanthropic 431
381 of-life, the lack of home care programs with PC training, support, awareness, and education are essential for the 432
382 and the absence of pediatric hospices in the country, viability and impact of PPC programs. There are still 433
383 similar to what is described in the literature [41–43]. many opportunities for improvement, such as the refer- 434
384 However, some families were able to care for their chil- ral time and death of patients, the creation of a pediatric 435
385 dren at home during their final days. hospice, and improving the bereaved follow up, among 436
386 Finally, family support during bereavement is an es- others. The implementation of a PPC program in 437
387 sential biopsychosocial need for the family’s well-being Colombia is a difficult but not impossible task to accom- 438
388 after the loss of a child [44]. Our program does follow- plish. With this paper, we hope that other PPC programs 439
389 up to support parents in grief: however, bereavement can be strengthened or new ones can be created in Latin 440
390 workshop attendance has been low (25%). We consider America and the Caribbean. 441
391 it an important aspect to improve by increasing coverage
392 and offering more family services. Future goals, achiev- Supplementary information 442
393 able through My Child Matters grant, include improving Supplementary information accompanies this paper at https://doi.org/10. 443
1186/s12904-020-00674-2. 444
394 inclusion and access by benefitting more than 500 chil-
395 dren in the region, accompanying 1000 families and rela-
Additional file 1: Appendix 1. Colombian legal framework related to 446
396 tives, and educating more than 1500 healthcare palliative care. Provide a summary of the Colombian laws and legislations 447
397 professionals. We also seek to make the enlarged pro- that support Pediatric Palliative Care and promote quality of life for 448
398 gram sustainable. children with life-limiting and threatening diseases. 449
Additional file 2: Appendix 2. Program approach strategy. The team 450
developed a question-based strategy to address institutional education 451
and awareness in PPC. 452
399 Limitations Additional file 3: Appendix 3. Institutional Satisfaction Survey. Online 453
400 This study shows the implementation of a PPC program institutional questionnaire applied to healthcare professionals through 454
401 in a teaching, general hospital in Cali, Colombia. This is the pediatric departments, to quantify satisfaction and referral motives. 455
457
456
402 a descriptive study, and the data were retrospectively
403 collected, which implies that selection and information Abbreviations 458
TCY: “Taking Care of You”; PPC: Pediatric Palliative Care; PC: Palliative Care; 459
404 bias could be introduced during its development. To AAP: American Academy of Pediatrics; IoM: The Institute of Medicine; 460
405 mitigate this situation, our databases were crossed with IMPaCCT: International Meeting for Palliative Care in Children’s Trento; 461
406 different sources of institutional information to improve CCCU: Children Cancer Care Units; CCU: Children Cancer Units; 462
NHPCO: National Hospice and Palliative Care Organization; PICU: Pediatric 463
407 the quality of information. On the other hand, our insti- intensive care unit; NICU: Neonatal intensive care unit; 464
408 tution is a specialized reference center for patients with ASOCUPAC: Asociacion de Cuidados Paliativos de Colombia; WHO: The World 465
409 highly complex diseases; therefore, the reported number Health Organization; HIV: Human immunodeficiency virus 466
410 of patients who benefit from the program is high when Acknowledgments 467
411 compared with other institutions. Additionally, the Co- The authors wish to thank all the children and the families that have been or 468
412 lombian healthcare system is based on universal cover- are part of our program, you’ve made it a marvelous journey that inspires us 469
to keep going. We also want to thank our adult and pediatric PC family: Dr. 470
413 age provided by several insurance companies, and as Arno Bromet, Dr. Carlos Chavarro, Dr. Elsa Tejada, Dr. Maria E. Giraldo, Dr. 471
414 such, patients are often transferred to other institutions Oscar Cifuentes, Isabel C. Correa, Clara Reyes, Jennifer Tovar, Tatiana Pineda, 472
415 due to individual insurance preferences or administrative Vilma K. Suarez, Alba L. Vargas, and Dra. Ximena Condines. We also thank 473
Andres Gempeler for his comments and Fundacion Valle Del Lili for their 474
416 limitations, making it hard to keep track of all PPC unconditional support. We are grateful to My Child Matters of Sanofi Espoir 475
417 patients. Likewise, there was no guarantee that all the Foundation. 476
418 patients with cancer and life-threatening conditions re-
Authors’ contributions 477
419 ceived outpatient care and completed follow-up through XGQ (PI) was the person that conceived and designed the program TCY in 478
420 the TCY program because patients often need difficult- collaboration with MICS (Co-PI), who helped conceive the program and 479
 Garcia-Quintero et al. BMC Palliative Care _#####################_ Page 10 of 11

480 create the database. LGPL provided knowledge with his writing expertise 6. Stevenson M, Achille M, Lugasi T. Pediatric palliative care in Canada and the 542
481 and was the leader of the investigation group, he additionally helped United States: A qualitative metasummary of the needs of patients and 543
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495 Funding 10. Radbruch L, de Lima L, Knaul F, Wenk R, Ali Z, Bhatnaghar S, et al. 558
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