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Palliative Care in Latin America from the Professional Perspective: A SWOT

Analysis

Article  in  Journal of Palliative Medicine · February 2015

DOI: 10.1089/jpm.2014.0120 · Source: PubMed

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Palliative Care in Latin America from the Professional Perspective:

A SWOT Analysis

Tania Pastrana, MD, 1

Carlos Centeno, MD, 2

and Liliana De Lima, MS, MHA 3

Abstract

Background: The development of palliative care (PC) in Latin America (LA) has been slow compared to other regions. A Strengths, Weaknesses, Opportunities, and Threats (SWOT) analysis may contribute to the identi- fication of barriers and successful strategies. Objective: The study’s objective was to conduct a SWOT analysis of the development of PC in LA from the PC professional perspective. Methods: Experts from 19 countries of the region were selected in collaboration with national associations. Specific questions were included in the Latin American Association for Palliative Care (ALCP) Atlas of Palliative Care cross-survey 2012. Content analysis was conducted categorizing responses in a SWOT framework. Descriptive and correlation analyses were performed. Results: A total of 577 statements were provided. Among the Strengths were integration into health systems and increasing number of professionals with PC training. Among weaknesses were lack of national PC programs, limited connection between policymakers and professionals, and barriers in the availability of opioids. Op- portunities were increased awareness of policymakers and higher interest of students and professionals. Threats were competing funding for other services and medications, limited interest of the pharmaceutical industry in producing affordable opioid medications, and emphasis by the media on opioid diversion and abuse. Comments were categorized under (1) health policy, (2) education and research, (3) service provision, (4) opioid avail- ability, and (5) advocacy. A moderately positive correlation was found (R = 0.4 in both) between the ALCP development index

7 and the number of positive/negative factors mentioned by country.

Conclusions: A SWOT framework is applicable in a situational analysis and helps to identify common aspects among the countries and key elements in the development of PC in Latin America.

Introduction

Palliative Care (PC) in Latin America (LA) began inthe 1980s with the support and guidance of international experts, who motivated local leaders.

1 However, LA is far from

offering PC to the population that could benefit from it. There is considerable heterogeneity in the level of development regarding policy, education, implementation, availability of opioids, and professionals’ activities within and between the countries, with provision of PC limited to large urban centers.

LA consists of 19 countries and a total population of ap- proximately 56.5 million inhabitants. In most of the countries, Spanish is the official language, with the exception of Brazil (Portuguese). The region is divided into three subregions:

Central America (Costa Rica, El Salvador, Honduras, Guate- mala, Nicaragua, and Panama); Latin Caribbean (Cuba and Dominican Republic); and South America (Argentina, Bolivia, Brazil, Chile, Colombia, Ecuador, Paraguay, Peru, Uruguay, and Venezuela). Mexico, part of North America, many times is included in LA studies due to language and cultural similarities.

The LA population is aging and it is expected that by 2020 more than 100 million people over the age of 60 will be living in this part of the planet.

2 The prevalence of chronic, non-

communicable diseases (NCDs) is high: In 2010 there were 103.7/100,000 deaths caused by malignant neoplasms and 47.9/ 100,000 by cardiovascular diseases.

2 The number of chronic

illnesses has increased and the patients affected by them fre- quently die after a long disease trajectory with complex

1 Department of Palliative Medicine, RWTH Aachen University, Aachen, Germany.

2 ATLANTES Research Program, Institute for Culture and Society, University of Navarra, Pamplona (Navarra), Spain.

3 International Association for Hospice and Palliative Care, Houston, Texas.

Accepted January 2, 2015.

JOURNAL OF PALLIATIVE MEDICINE Volume 18, Number X, 2015 ª Mary Ann Liebert, Inc. DOI: 10.1089/jpm.2014.0120

1

symptomatology. Aggressive and expensive curative treat- ments sometimes cause more suffering and place a high burden on patients and society. In the upcoming years, the aging of the society and the epidemiological transition will result in an in- crease of the number of persons who could benefit from PC.

The development of PC in LA has been studied in the last years. The Atlas of Palliative Care was edited in 2012 and provides a regional report as well as a detailed description of the status in each country.

3,4 In addition, papers analyzing

specific aspects of the situation have been published. 5–7

This paper is part of the analysis. Our aim was to conduct a SWOT analysis of PC development in LA from the PC professional perspective to contribute to the identification of barriers and successful strategies.

Methods

Nineteen countries with Spanish or Portuguese as the of- ficial language were included in the study: Argentina, Boli- via, Brazil, Chile, Colombia, Costa Rica, Cuba, Dominican Republic, Ecuador, El Salvador, Guatemala, Honduras, Mexico, Nicaragua, Panama, Paraguay, Peru, Uruguay, and Venezuela. Three PC professionals were selected from each country using the following criteria: (1) individuals who previously published reports on the status of PC in their own country, and/or (2) individuals identified by members of the ALCP steering committee in collaboration with national as- sociations as leaders in the field of PC in the countries. Se- lected individuals were e-mailed invitations to participate.

The data was collected through semistructured interviews with PC experts from 19 countries as part of the ALCP Atlas of Palliative Care project in 2011–2012.

3 Participants were

interviewed regarding the development of specialized PC services, education and training, vitality, and health policy. The survey included specific questions on what they per- ceived to be the Strengths, Weaknesses, Opportunities, and Threats (SWOT) in the development of PC in their respective countries. As in any SWOT analysis, Strengths and Weak- nesses cover internal aspects of the organization (for in- stance, personnel, facilities, location, products, or services), whereas Opportunities and Threats cover the external envi- ronment (political, economic, social, technological, or com- petitive factors).

8 For example, one of the questions asked

was, ‘‘Please list the three main Strengths of palliative care in your country at this time.’’ A short definition of SWOT terms was given (see Box 1).

Responses were listed by country and in their corre- sponding main group (Strengths, Weaknesses, Opportunities, and Threats). Additionally, we conducted the content anal- ysis

9 with support of the software MAXQDA 11 (version 11,

VERBI Software-Consult-Sozialforschung GmbH, Berlin, Germany).

10 Two of the coauthors (LDL and TP) identified

common issues, and inductive categories were created and discussed until an agreement was achieved.

Statements of each category were summarized and pre- sented in Table 1, classifying them as favorable (S, O) or unfavorable (W, T), internal (S, W) or external (O, T). The frequency with which similar terms were repeated is shown. Spearman correlation was calculated for the number of statements in each category with the ALCP Development Index in PC.

6 Statements and terms were translated into En-

glish by the authors and verified by a native English speaker.

Results

A 103% (59 participants) response rate was obtained, since we received responses from all countries, and in two coun- tries one additional individual participated on his or her own initiative. A total of 577 statements were given, with an av- erage of 10 statements per participant. These were catego- rized in the SWOT categories. Duplicates were deleted, resulting in 104 statements (see Table 1). Total number of favorable statements was 285 (154 Strengths and 131 Op- portunities). Total number of unfavorable statements was 292 (209 Weaknesses and 83 Threats). Total number of internal statements (Strengths plus Weaknesses) was 363, and ex- ternal statements (Opportunities plus Threats) were 214.

Weaknesses were lack of national PC programs, limited connection between policymakers and professionals, limited number of specialists, insufficient and isolated service pro- vision, and barriers to opioids. Opportunities were increased awareness of health care policymakers concerning PC needs, higher interest of students and professionals, and improved access to opioids. Threats were competing funding for other services and medications, limited interest from the pharma- ceutical industry in affordable opioid medications, and em- phasis by the media on opioid diversion and abuse.

Five common themes were identified and comments were categorized in each: health care policy, education and re- search, opioids, service provision, and advocacy. Table 2 shows the percentage of statements in each category in re- lation to the total number of statements from each country. An analysis by percentage was elected, since the number of statements differed by country.

Health care policy

This category presents policy issues on national and in- ternational levels. It includes the highest number of favorable (16.6%) as well as unfavorable (13.4%) aspects identified by the experts for the development of PC in LA. For 12 coun- tries, health care policy was the most decisive factor (Panama was the highest), whereas for 8 countries it was the most significant barrier.

The reported Strengths are mostly related to the existence of a national program (i.e., Costa Rica, Cuba, Panama and Chile) as a component in existing health care strategies (i.e., national cancer control programs) and the growing interest of politicians in PC in some countries. Weaknesses are related to the lack of support and lack of interest as well as ignorance of authorities when developing policies.

Reported Opportunities are related to regional or interna- tional issues and organizations, such as support from WHO,

Box 1: SWOT Definitions Given in the Questionnaire

� Strengths are positive internal attributes that are helpful to the advancement of palliative care.

� Weaknesses are internal attributes that are barriers to the advancement of palliative care.

� Opportunities are positive external conditions that are helpful to the advancement of palliative care

� Threats are external conditions that are harmful to the advancement of palliative care.

2 PASTRANA ET AL.

Table 1. Summary of Statements of the SWOT Analysis Based on Five Categories

Strengths Weaknesses

Health care policy � Existence of a national PC program or strategy in Costa

Rica, Cuba, Chile, and Panama. � PC is included in some health insurance plans in Mexico. � PC is included in the primary level of care in Venezuela. � Integration of PC in broader programs such as national

cancer programs or others such as AUGE-Program in Chile, Program ‘Family Physician and Nurse’ (Cuba), national plan ‘good living’ (Ecuador).

� In Guatemala and Venezuela PC is provided free of charge, funded by the government or by charities.

� Existence of a database to collect information for monitoring and evaluation of PC programs in Chile.

� Lack of a national PC program in most countries. � Lack of an auditing system to establish and monitor

quality standards and service provision. � Lack of institutionalization of PC which has led to

development based on personal self-funded initiatives. � Limited participation of PC experts in advisory roles with

health ministries for the development of programs and standards.

� Lack of knowledgeable technical expertise needed for creating qualified teams.

� Health authorities and politicians are not well informed about PC, which hinders the dissemination and implementation of programs.

� PC discussions in Nicaragua tend to follow a political agenda.

� Slowness in the creation and approval of regulatory processes by national regulatory authorities.

Opportunities Threats

� International calls from multilateral organizations such as the United Nations, WHO, or the Pan American Health Organization regarding the importance of care for patients with chronic noncommunicable diseases.

� Human Rights Watch’s interest in PC and its reports have increased awareness about national policies to ensure access to treatment and care.

� Growing interest by and involvement of the government expressed by law projects and educational projects. It is partially generated by the results coming of PC interventions and by epidemiological local studies.

� Development of a national system of accreditation of hospitals that include PC as an essential practice in Brazil.

� Epidemiological trends such as the ageing population and thus a growing number of persons who require PC.

� Lack of continuity in public policies results in frequent changes of responsible authorities.

� Possible introduction of a law referring to legalization of euthanasia and assisted suicide in Colombia, Mexico, and other countries.

� Poverty and limited resources, both at the country and the population levels.

Strengths Weaknesses

Education/Research � The number of professionals with PC training is

increasing. � PC is gaining academic and scientific prestige and is

increasingly recognized by other disciplines. � There is an increase in research and participation in

national and international congresses. � PC certification is available in several countries. � Inclusion of PC in the undergraduate curriculum in some

medical schools and as a mandatory course in Cuba, Colombia, and Uruguay.

� Several postgraduate and continuing education PC programs have been implemented in medicine and in other disciplines.

� New publications of guidelines and manuals for professionals with norms and protocols are being published in different countries.

� In most countries PC is not included in the undergraduate medical and other related health disciplines curricula.

� Health care personnel do not have enough knowledge or interest in PC.

� Postgraduate courses are limited and continuing education is poor.

� Poor training due to limited job possibilities. � Limited number of PC professionals with full dedication

is insufficient to cover the needs. � Few specialists are responsible for all fronts

(management, service provision, and education) and are experiencing an overload.

� Low income and few career opportunities for professionals working in PC.

� Lack of PC directories, norms, and standards. � Insufficient resources and reduced interest result in lack of

research and publications as well as in limited collaboration and networking.

(continued)

PALLIATIVE CARE IN LATIN AMERICA 3

Table 1. (Continued)

Opportunities Threats

� Increased interest from students and professionals in PC education.

� Integration and cooperation among institutions from other academic sectors and other service provision areas.

� Increased interest of nonprofit organizations that support cancer patients to include PC in their services.

� Multisectoral support, including other associations such as national chapters of the International Association for the Study of Pain (IASP).

� Yearning for better education by professionals in the health care management (programs and services) and in the educational and research sector.

� There are ongoing discussions for interregional projects in Central America.

� Lack of interest by universities’ deans. � Personal interest and rivalry between the professionals prevail

over the development of the field. � Tensions between members of associations with similar

objectives in the same country weaken the development. � Misconception of health care professionals about PC as ‘patient

abandonment’ or lack of knowledge about the programs.

Strengths Weaknesses

Service provision � Interinstitutional and interdisciplinary teams

working together in Argentina, Chile, Costa Rica, Dominican Republic, Ecuador, and Panama.

� Growing number of private and public services generate more job opportunities.

� Existence of PC-Units at referral centers with experience/tradition.

� PC is not considered a priority in the health care institutions. � Resistance to PC concepts such as interdisciplinary teamwork or

to flat hierarchies. � Limited collaboration among leading institutions and services,

often resulting in competition. � Limited PC services available as well as unequal distribution

(mostly in big cities and specialized hospitals). � Different models of PC service provision, such as hospices, day

clinics, or long-term hospital services, are missing. � Lack of resources at different levels: space and infrastructure,

equipment, supplies, transportation, and information technology.

� Allocation of resources to expensive curative treatments with little or no consideration of cost effectiveness of these approaches.

� Lack of continuity of care and of treatment caused by nonavailability of services for medium and long-term hospitalization.

� Heterogeneous quality of the PC services. Some services do not work with qualified/trained staff, have incomplete teams, or do not fulfill the criteria to provide PC, resulting in poor quality of care.

� No regulation in the private sector for medicines in Chile, causing delivery of inadequate medication or of inferior quality.

� Few programs for caring for the family in Mexico. � Risk of burn-out syndrome of professionals caused by pressure

in addition to lack of (economical or academic) incentives. � Services oriented towards patients with cancer, leaving patients

with nononcological diagnosis with less coverage.

Opportunities Threats

� Family and relatives are an important resource for caregiving.

� Home is the favorite place of care for many patients.

� Some health corporations are emerging with interests averse to PC’s philosophy of care.

� Limited financial resources, which restricts the acquisition of medication and materials/products/recourse/supplies.

� Lack of transparency in the costs of services or in budget allocations in private institutions.

� Economic interests in health care as a profit-oriented institution and the belief that PC is not profitable.

� The bureaucracy of public institutions and the slowness of the system for nominations of personnel and the updating of outdated organizational charts.

(continued)

4 PASTRANA ET AL.

Table 1. (Continued)

Strengths Weaknesses

Opioids � Good access to opioids in Argentina,

Chile, Panama, and Venezuela. � No limits to the dosage or the number of

treatment days that physicians are allowed to prescribe in Paraguay and Peru.

� Low prices in Peru.

� Little interest from government/regulatory authorities to improve access to opioids including availability, distribution, prescription.

� Communication between different sectors is difficult and is the way to come to a consensus for an advance in the improvement of the access.

� Protocol of medications used in Costa Rica is outdated. � In Panama the laws and decrees governing the use of opioids are

outdated. � Access to opioids is limited due to restrictive regulations with

complicated procedures or prescriptions that expire. � In Venezuela, public and private pharmacies are unwilling to store

opioids. � High costs are a barrier in the access to opioids. In addition, private

health insurances in Peru and El Salvador do not reimburse the price of medication to patients with chronic conditions.

� The estimates submitted to the INCB are not enough to cover the needs (Ecuador, Panama, and Peru).

� Opioids are poorly available in institutional pharmacies, health centers, PC units, and in emergency and cancer care services.

� New opioids for rotation are not available; neither are morphine oral (Cuba), morphine parenteral, and oxycodone prolonged release (Honduras).

� Special prescription formularies are difficult and costly to obtain in some countries.

� Limited knowledge among health care personnel regarding prescription, dispensing, and use of opioids.

Opportunities Threats

� Acknowledgment of opioids as means to relieve suffering as a human right.

� Good cooperation with the authorities in charge of the regulations of the provision of opioids or the intention to improve this cooperation with changes in legislation.

� The misconceptions by patients and health care personnel about risk of addiction and other adverse effects of opioids.

� Misuse and illegal drug traffic. The emphasis of the media on these events increases the fear of uncontrolled use of opioids.

� Limited support from the pharmaceutical industry for educational activities.

� Gap between the efforts for education of health care personnel and the availability of opioids as well as other medications.

� Little interest from the pharmaceutical industry in PC drugs in the country (Argentina).

Strengths Weaknesses

Advocacy � Increasing number of PC promotional

activities in government, academic, and medical communities.

� Cooperation with international organizations and institutions and international acknowledgment of the local work.

� Lack of effective advocacy campaigns by professional associations to increase awareness among politicians and policymakers.

� Failure to unite the efforts of all stakeholders in the development of PC. � Limited advocacy strategies and little educational and promotional

activities. � Limited collaboration to promote PC and to have more influence at the

policy level. � Absence of information at the community level. � The media does not place PC in its true light by trivializing the suffering

at end of life and by disinterest in informing about the importance of PC. � The community is poorly informed about PC, or has misconceptions

about PC, which lead to low demand for the service.

Opportunities Threats

� Interest and involvement of the community with PC; and the experience of the benefits of PC supports its promotion and request for PC.

� Interest of the media for promotion of PC.

� Lack of support from international organizations of the health authorities in order to develop PC.

PALLIATIVE CARE IN LATIN AMERICA 5

the reports by Human Rights Watch, the ALCP, and the In- ternational Association for Hospice and Palliative Care (IAHPC). In Colombia and Mexico the possibility of the adoption of a law or regulation on euthanasia was identified as a threat.

Education and research

This category includes activities on education and research including publications. It was the second most mentioned for favorable (11.3%) and unfavorable (13.1%) factors in de- velopment of PC in LA.

The growth of PC with regard to the number of professionals and more recognition of the discipline were considered Strengths, as were educational programs at un- dergraduate and postgraduate level in the countries where it is present (i.e., Argentina, Cuba, and Mexico). At the same time, the most common reported Weaknesses were related to the limited number of educational programs for students (i.e., Argentina, Mexico) and the few available paid positions for professors and researchers as well as the lack of incentives for professionals. International collaboration was identified as an Opportunity, whereas lack of interest and misconcep- tions by key persons were reported as Threats.

Service provision

This category had the highest variety of comments pre- sented as Weaknesses. Issues related to service provision were the third most important, with 11.3% favorable and 10.4% unfavorable factors. Experts from Costa Rica gave the

most statements in this category. Most of these were related to allocation of resources to curative treatments and very little to PC, including space and human resources. Reported Strengths were the growth of the number of services and the acquired expertise that these centers have achieved.

Availability of opioids

Availability of opioids was described in unfavorable terms (7.9%) in 14 countries and in favorable terms in 11 (3.1%). Experts from Peru gave most of their statements in this cat- egory. Only four countries reported good availability of opioids as a Strength: Argentina, Chile, Panama, and Vene- zuela. Most of the countries reported high prices, restric- tive regulations, and limited availability of medications as Weaknesses. Misconceptions about the use of opioids and their risk as well as the weak support of the pharmaceutical industry were considered Threats.

Advocacy

Advocacy was the least mentioned aspect, mentioned in 5% as favorable comments and in 5.6% as unfavorable ones. A growing number of promotional activities in PC were re- ported as Strengths. However, most of the Weaknesses were related to little or no knowledge on how to deal with advo- cacy, and lack of awareness of PC. As Threat, one comment was related to the lack of support from international organi- zations to help mobilize health authorities, whereas one of the comments mentioned as Opportunity the interest of the media in the field.

Table 2. Percent of Favorable (S, O) and Unfavorable (W, T) Statements according with the Categories

a

Favorable aspects Unfavorable aspects

Countries

Health care

policy Education Service Opioid Advocacy Subtotal

Health care

policy Education Service Opioid Advocacy Subtotal

Costa Rica 15.8 14.0 22.8 1.8 10.5 64.9 5.3 7.0 15.8 5.3 1.8 35.1 Chile 22.7 4.5 22.7 0.0 4.5 54.5 22.7 4.5 18.2 0.0 0.0 45.5 Mexico 11.1 14.8 14.8 0.0 3.7 44.4 22.2 18.5 7.4 0.0 7.4 55.6 Argentina 12.5 18.8 0.0 12.5 0.0 43.8 12.5 18.8 9.4 0.0 15.6 56.3 Uruguay 20.0 14.3 11.4 8.6 2.9 57.1 8.6 8.6 17.1 0.0 8.6 42.9 Cuba 20.0 13.3 13.3 0.0 6.7 53.3 6.7 6.7 13.3 13.3 6.7 46.7 Brazil 18.2 12.1 6.1 3.0 6.1 45.5 18.2 15.2 15.2 3.0 3.0 54.5 Panama 27.0 5.4 16.2 5.4 2.7 56.8 18.9 13.5 2.7 5.4 2.7 43.2 Colombia 16.7 16.7 4.2 4.2 8.3 50.0 4.2 20.8 16.7 0.0 8.3 50.0 Venezuela 19.4 6.5 6.5 6.5 0.0 38.7 19.4 19.4 16.1 6.5 0.0 61.3 Peru 19.4 13.9 2.8 0.0 2.8 38.9 11.1 13.9 5.6 27.8 2.8 61.1 El Salvador 15.6 6.3 6.3 6.3 3.1 37.5 18.8 15.6 3.1 15.6 9.4 62.5 Ecuador 18.9 18.9 8.1 0.0 0.0 45.9 8.1 13.5 10.8 13.5 8.1 54.1 Nicaragua 13.3 16.7 20.0 0.0 3.3 53.3 10.0 20.0 10.0 6.7 0.0 46.7 Guatemala 14.7 17.6 11.8 0.0 5.9 50.0 20.6 0.0 5.9 14.7 8.8 50.0 Dom Rep 10.0 12.5 15.0 5.0 10.0 52.5 12.5 17.5 5.0 7.5 5.0 47.5 Honduras 16.7 12.5 8.3 0.0 16.7 54.2 16.7 12.5 4.2 8.3 4.2 45.8 Bolivia 26.9 0.0 3.8 0.0 3.8 34.6 15.4 15.4 11.5 19.2 3.8 65.4 Paraguay

b 0.0 34.4 12.5 3.1 3.1 53.1 9.4 9.4 12.5 3.1 12.5 46.9

16.6 13.6 11.3 3.1 5.0 49.5 13.4 13.1 10.4 7.9 5.6 50.5

a Tinting indicates the level of development according with Pastrana et al. 2014. Dark gray: countries with high development in

comparison with the region; light gray: countries with middle development; no color: low development. b Paraguay was not included in the analysis.

Bold numbers indicate higher figure in each aspect.

6 PASTRANA ET AL.

ALCP development index

A moderately positive correlation was found (R = 0.4 in both) between the ALCP development index

6 and the number

of positive/negative factors mentioned by each country. A moderate correlation (R = 0.6) was found between countries with a high level of development and the identification of service provision as a negative development aspect; whereas countries with a lower level of development provided state- ments more frequently on availability of opioids as barriers to development (correlation R = -0.6).

Frequency of main terms used

The most frequent terms used were palliative care, de- velopment, and health (409, 181 and 143, respectively). Of these, each was used 233, 119, and 74 times in favorable statements. The terms with the highest frequency in unfavor- able statements were palliative care, lack, and opioids (176, 78, and 68 times each). Table 3 includes the analysis of terms.

Discussion

This study is an analysis of the opinions of 59 PC experts in 19 countries in LA using a SWOT framework. Previous re- ports about barriers for PC development in other regions have been published,

11–14 but we were unable to identify published

regional reports using a SWOT framework. Common themes were identified and categorized as health

care policies, opioids, service provision, education/research, and advocacy. These fall within the WHO Public Health

Model for palliative care, 15

with the exception of advocacy. The categories with a considerable amount of comments were in the unfavorable (W, T) and the internal (S, W) ca- tegories, suggesting that the participants’ perception is that the greatest limitations lie within the PC field, rather than being related to external factors.

Health care policy

The fact that PC was included in cancer control programs in several countries was a positive factor in the development and establishment of the discipline; however, this also limited its development to the cancer field. As a result, patients with nononcological diagnoses but with PC needs are left un- treated and with unmet needs in these countries.

Limited financial resources affect health care systems, including the provision of PC. This has an impact on patients’ possibilities to access care in remote areas or for those who do not have the resources to pay for care not covered by insur- ance or public programs. Government involvement is crucial through the establishment and adoption of national laws, national programs, education and accreditation of the spe- cialty and of services, and by supplying resources for de- velopment and research. At the same time, government involvement can constitute an obstacle through bureaucracy, inadequate regulations, adverse allocation of resources, dis- interest, and lack of continuity.

Education and research

Education is a positive influence when it is available at undergraduate and postgraduate levels, but even more so when it is homogeneous and covers a wide range of disci- plines. There is a positive correlation between accreditation of PC as a specialty or subspecialty and the existence of postgraduate training.

5 This has also been reported as a bar-

rier in other regions. 11

The participants reported positive factors such as the increase in numbers of professionals working in the field, as well as improvements in their quali- fication and experience. Their involvement in areas other than service provision, such as education or administration, is also considered positive regarding the advancement of PC. However, so far there are neither sufficient professionals to cover the current needs nor enough places for employment. Difficult relations among professionals as well as inappro- priate motivators, such as financial interests and personal recognition, are limiting factors. Limited research is also a Weakness, although countries such as Argentina and Chile are reporting progress. International cooperation in research is reported as a crucial role.

Availability of opioids

In some countries opioids are available and affordable and there is a good collaborative relationship between prescribers and regulators. However, most of the countries report diffi- culties with availability, especially in rural and community pharmacies. Lack of education and knowledge as well as fears and misconceptions in the general public and among health care professionals hinder appropriate pain treatment. Strict laws and regulations on the use of opioids in many countries also have a negative effect on the accessibility to pain treatment. The problem of abuse and diversion in some

Table 3. Most Frequently Used Terms (Original Term in Spanish/Portuguese)

Terms a

(Spanish and Portuguese)

Used in favorable statements

Used in unfavorable statements

Total frequency

Palliative care 233 176 409 (Cuidados paliativos/

Cuidados paliativos) Development 119 62 181 (Desarrollo/

Desenvolvimento) Health 74 60 134 (Salud/Saúde) Opioids 29 68 97 (Opioides/Opioides) National 62 27 89 (Nacional/Nacional) Program 53 35 88 (Programa/Programa) Unit 35 47 82 (Unidades/Unidades) Lack 1 78 79 (Falta/Carência) Patients 23 55 78 (Pacientes/Pacientes) Professionals 42 25 67 (Profesionales/

Profissionais) Country 38 29 67 (Paı́s/Paı́s) Total 709 662 1371

a Included singular and plural form in Spanish and Portuguese.

PALLIATIVE CARE IN LATIN AMERICA 7

developed countries has a negative effect on efforts to improve availability and access to opioids for medical treatment.

Service provision

Availability of services is considered both a strong and a weak factor. They are growing in quantity and providing job opportunities for PC workers. Some of the units or programs are referral centers, but there is limited cooperation between PC units and other specialties. The number of services is not enough to cover the needs, and most of the services are lo- cated in large urban centers. Not only personnel and infra- structure are scarce, but the resources needed for adequate care are also missing. The quality of the services varies in most countries and there are no monitoring systems in place to guarantee quality standards. Burnout syndrome among team members was reported as Weakness in some countries, whereas in Cuba the care of the team was reported as a Strength. The most significant Threat is the lack of ac- knowledgment of the work which is represented by low sal- aries and lack of job promotions. Participants reported lack of awareness of PC in the health community, the government, and the local community consistently throughout LA. Similar results have been reported in Europe and were published in the literature.

11 Different kinds of services are Strengths as

long as they cover a broad part of the population, but in many countries health care systems do not guarantee continuity of care and smooth referral and counterreferral processes.

Advocacy

Further negative factors are the lack of advocacy and the lack of directories, norms, and standards to guide the field. The absence of a PC association hinders the development, but also to have more than one association. Countries with more than one association report waste of efforts and lack of in- fluence on stakeholders. Associations with cancer or pain programs do help to advance PC by using already existing infrastructure and structures on the one hand, but on the other hand they hinder the development of the discipline for other conditions and diseases.

The involvement of the scientific community and the local community were identified as key factors in advocacy. The advocacy work contents important educational/informative activities, with support of the media, in order to inform, gen- erate awareness, and clarify misconceptions about PC and the use of opiods. Cooperation among international institutions and organizations was reported as an important external factor. Unfortunately, as reported in the ALCP atlas, organizations/ institutions in very few countries in the world (United States, Spain, the United Kingdom, and Canada) have established formal cooperation efforts aimed at advancing PC in LA.

The mention of the lack of support from UN multilateral organizations to mobilize health authorities reflects a lack of understanding of these organizations’ diplomatic role. Hence, they can only make recommendations, and in order to actively participate in internal developments, they need to be invited by the respective government of the member states.

ALCP development index

The number of positive and negative statements is mod- erately correlated with countries’ level of PC development.

Countries that ranked higher in the ALCP index mentioned issues related to service provision more frequently as a negative factor for development. This reflects probably that the respondents may be able to focus on their own services, as the external environment does not pose a threat and that there may be adequate laws and regulations in place. Countries with a lower level of development provided statements more frequently on availability of opioids as a barrier to develop- ment, reflecting lack of government awareness in terms of access to medicines and pain treatment and the lack of re- garding PC as an integral component in public policy.

Frequency of main terms used

The analysis of terms provides an overview of the most frequently used terms in the responses. Most of the terms analyzed were used in favorable statements, but they were generic (i.e., palliative care). The only qualifier used fre- quently was lack (78 times in unfavorable statements, second highest after palliative care). This reflects the general opinion of the participants that additional resources and steps need to be taken to advance the field.

In a study comparing five LA countries, similar issues were identified: low prioritization of PC in health care policy formulation and in health care education, as well as problems in the accessibility to opioids.

16 The same barriers were

found in 44 European countries, with the lack of PC educa- tion and training programs, lack of awareness and recognition of PC, and limited availability of/knowledge about opioid analgesics

11 being the most relevant barriers.

Study limitations

This study presents information based on the personal opinion of PC workers in countries in LA. Their opinions may not reflect the real situation of their countries but rather their own personal perceptions. Given that it was a written online questionnaire, it was not possible to discuss with each partici- pant his or her statements for clarifications or to achieve a consensus within each country. The translation of the terms was done by the authors and not by professional translators; how- ever, it was verified by a native English speaker. The usefulness of a SWOT analysis may be limited in large contexts such as regional analyses, because of the high variability in the stages of development among the countries included in the study.

Conclusions

With this study it was possible to identify general aspects common to all the countries as well as to identify key ele- ments in the development of PC in LA, which, if existing, were considered Strengths. Where they were lacking, they were considered Weaknesses. This fact supports the strategy of the Public Health Model for PC proposed by WHO.

PC in LA is in a developing stage and the situation among countries is very heterogeneous, which makes it difficult to give a unique picture for LA. However, it points to identi- fying barriers as well as resources and potential. Additional analysis at the national level would be useful to evaluate and monitor the development of PC in LA.

Acknowledgments

The project Palliative Care Atlas in Latin America was led by the ALCP with financial support of the Open Society

8 PASTRANA ET AL.

Foundations and in cooperation with the International Association for Hospice and Palliative Care (IAHPC), the European Association for Palliative Care (EAPC), the Soci- edad Española de Cuidados Paliativos (SECPAL), and the ATLANTES Research Program of the Institute for Culture and Society (ICS) at the Universidad de Navarra. Further members of the working group are Roberto Wenk, Jorge Eisenchlas, Carolina Monti, and Javier Rocafort.

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Address correspondence to: Tania Pastrana, MD

Department of Palliative Medicine University Hospital RWTH Aachen

Pauwelsstr. 30 52074 Aachen, Germany

E-mail: [email protected]

PALLIATIVE CARE IN LATIN AMERICA 9

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