CP en Latinoamérica

Download as pdf or txt
Download as pdf or txt
You are on page 1of 10

review article

End-of-Life Care in Latin America

abstract
Cancer has become a global pandemic with disproportionately higher mortality rates in low- and middle-
income countries, where a large fraction of patients present in advanced stages and in need of end-of-life
care. Globally, the number of adults needing end-of-life care is greater than 19 million, and up to 78% of
these patients are living in low- and middle- income countries. In the Americas alone, more than one million
people are in need of end-of-life care, placing an enormous burden on local health systems, which are often
unprepared to meet the challenge presented by this complex patient population. In Latin America, cancer
care is characterized by the presence of vast inequalities between and within countries, and the provision
of end-of-life care is no exception. Disparities in access to advanced care planning, with a lack of provision
of adequate palliative care and pain medication, are common in the region. These shortcomings are related
in large part to inadequate or inappropriate legislation, lack of comprehensive national palliative care
plans, insufficient infrastructure, lack of opportunities for clinical training, unreliable reporting of data, and
cultural barriers. This report reviews the current status of end-of-life care in Latin America, focusing on
identifying existing deficiencies and providing a framework for improvement.
J Glob Oncol 3. © 2016 by American Society of Clinical Oncology Licensed under the Creative Commons Attribution 4.0 License

INTRODUCTION of adequate palliative care and pain medication.


These regional shortcomings are related to inade-
Recently, noncommunicable diseases, such as
quate legislation, insufficient infrastructure, lack of
cancer, have become a global pandemic with
opportunities for clinical training, unreliable report-
disproportionately higher rates in low- and middle-
ing of data, and cultural barriers. This report reviews
income countries (LMICs).1 Aging of populations,
end-of-life care in LA, focusing on identifying the
paired with a concomitant transition from infectious
existing deficiencies and providing a framework for
Enrique Soto-Perez-de- diseases to noncommunicable diseases, has had a
improvement.
Celis tremendous impact on mortality risks, and LMICs
have struggled to adapt to this changing epidemio- LEGISLATION ON END-OF-LIFE CARE IN LATIN
Yanin Chavarri-Guerra
logic landscape.2 By 2020, it is estimated that more AMERICA
Tania Pastrana than 100 million people older than 60 years will be
Rossana Ruiz-Mendoza living in Latin America (LA) and the Caribbean and Since 1990, WHO has sought to integrate palliative
that more than half of this population will live beyond care into existing health systems, including advice
Alexandra Bukowski
80 years.3 In LA alone, more than one million new and guidelines for governments on priorities and
Paul E. Goss how to embed palliative care into national cancer
cancers and up to 600,000 cancer deaths occur
each year,4 placing a considerable burden on local control programs.7 Recently, the World Palliative
Author affiliations appear at
health care systems. This is worsened by a large Care Alliance has recommended that all govern-
the end of this article. ments integrate palliative care into health care
Supported by The Global
proportion of patients presenting with advanced
disease at diagnosis5 and thus requiring greater programs as an effective way to strengthen existing
Cancer Institute, Boston,
MA, and Avon expenditure and increasingly complex interventions health systems.8 WHO9 and the World Palliative
International Breast in their care. Globally, the number of adults in need of Care Alliance have joined forces in recommending
Cancer Research Program,
end-of-life care is greater than 19 million, with 78% that countries specifically include in their health
Massachusetts General systems laws and guidelines that acknowledge
Hospital, Boston, MA.
of these patients living in LMICs. In the Americas, it
has been estimated that 2,588,117 people are in and define the role of palliative care within the
Corresponding author:
Paul E. Goss, MD, PhD, need of end-of-life care, of whom roughly 40% have system, recognize palliative care as a distinct med-
Avon Breast Cancer cancer.6 In this context, it has become essential for ical subspecialty, and provide appropriate licensure
Center of Excellence, of palliative health care providers, with the goal of
Massachusetts General LA to build and strengthen infrastructure to provide
Hospital Cancer Center, adequate end-of-life care. Unfortunately, in this re- defining a national strategy on palliative care.6
55 Fruit St, Lawrence gard, the region has lagged behind more developed In LA, end-of-life care in the form of palliative
House, Boston, MA
02114; e-mail: pgoss@ countries, and vast inequalities remain related to services and educational resources has increased
mgh.harvard.edu. access to advanced planning, with a lack of provision recently, more so in some countries, such as Costa

261 Volume 3, Issue 3, June 2017 jgo.org JGO – Journal of Global Oncology

© 2016 by American Society of Clinical Oncology Licensed under the Creative Commons Attribution 4.0 License
Downloaded from ascopubs.org by 146.185.203.237 on April 20, 2019 from 146.185.203.237
Copyright © 2019 American Society of Clinical Oncology. All rights reserved.
Rica, Chile, Argentina, and Uruguay, than in the Countries in LA have lagged behind developed
rest of the region.10 However, although better in- nations in the inclusion of ADs into their legal
tegration of palliative policies could benefit millions framework, and only a handful of countries have
of patients and their families throughout the region, specific federal or regional laws pertaining to ADs.
only four countries (Uruguay, Mexico, Colombia, and Although all countries include the right to informed
Panama) have adopted national palliative laws.11,12 consent in their laws (as well as the right to refuse
Panama was the first country in the region to launch treatments), only six countries (Argentina, Brazil,
a national palliative care policy in 2011.13 Similar Colombia, Mexico, Panama, and Uruguay) have
legislation was introduced in Uruguay in 2013.12 specific legislation regarding an AD document and
Soon thereafter, in 2014, Mexico and Colombia the requirements to create one (Table 2 and Fig
passed national palliative laws. The official Mexican 1B). Panama’s law was the earliest such law (Ley
norm (NOM-011-SSA3-2014) aims to establish No. 68 of 2003),17 which includes a chapter on
specific palliative criteria and adequate delivery ADs within a broader legislation regarding pa-
of services.14 Meanwhile, the palliative care law tients’ rights. However, the first law specifically
in Colombia aims to regulate the rights of patients concerning ADs in LA was published in Mexico
and their families with respect to terminal disease, City in January 2008 (Ley de Voluntad Antici-
including the management of pain and other phys- pada).18 The original version of this law made it
ical, emotional, social, and spiritual symptoms.14,15 difficult for patients to draft their own document
because the presence of a notary public was
In LA, it is generally more common to find sections needed for an AD to be valid; the law was reformed
within broader health care laws that regulate pal- in 2012 to eliminate this requirement.18 Different
liative and end-of-life care than to find dedicated versions of this law have since been adopted by
palliative care laws. Although only four countries various Mexican states,30 and since 2009, the
have specific palliative care legislation, seven federal Ley General de Salud (General Health
countries have a national palliative care plan (five Law) includes ADs as a patient’s right.28 Other
of which are integrated with plans for cancer or countries in LA that have legislated on ADs are
pain), and 13 have a national cancer program that Uruguay (Ley No. 18.47319) and Argentina (Ley
includes palliative care within the program’s 25.52929 and Ley 2674220) in 2009, Brazil (Res-
framework11 (Table 1 and Fig 1A). Two examples oluç~ao CFM No. 1.995/20122’) in 2012, and
of successful, high-quality, and integrated pallia- Colombia (Ley Consuelo Devis Saavedra15) in 2014.
tive care programs within LA are in Chile and Costa
Rica. They rank as the best in LA according to the Only the Mexican, Uruguayan, and Brazilian laws
2015 Quality of Death Index.23 This index uses are entirely dedicated to ADs, whereas others
quantitative and qualitative indicators of end-of- include ADs within broader documents. Two such
life care to evaluate local programs according to documents, those in Brazil21 and Colombia,15 do
the following five criteria: palliative and health care not include specific instructions on how to draft
environment, human resources, affordability of ADs, and both the Colombian15 and Mexican18
care, quality of care, and the level of community laws make ADs available only to people who are
engagement.23 deemed terminally ill (defined as an estimated life
expectancy of less than 6 months in Mexico18 and
ADVANCED CARE DIRECTIVES IN LA as a “fatal short-term prognosis” in Colombia15). In
Uruguay, Mexico, and Panama, ADs can be
Advanced directives (ADs) are legal documents signed by the patient in front of a witness at any
that allow patients to express decisions about their location, whereas in Argentina, they must be
end-of-life care when patients have the full capac- signed in front of a notary public or a judge. The
ity to do so; the document defines the patients’ adoption of these laws is difficult to evaluate be-
wishes about treatments or interventions that may cause of a lack of published results. In Mexico City,
arise in the future when they are incapacitated or only 3,000 ADs were signed between 2008 and
unable to make such decisions themselves.24 2014,31 with 48% of these signed in private hos-
ADs, in the form of living wills, were first created pitals and only 21% signed in public hospitals.32
in the United States in the late 1960s,25 but it was
not until the 1991 Patient Self-Determination Act
that the completion of ADs was included in federal EXISTING PALLIATIVE CARE INFRASTRUCTURE IN
legislation.26 The US example was followed by THE REGION
other Western nations, and the Council of Europe The beginnings of palliative care services in LA can
included ADs as a right in Article 9 of the 1997 be traced back to the 1980s, when teams from
Convention of Human Rights and Biomedicine.27 Colombia and Argentina started implementing

262 Volume 3, Issue 3, June 2017 jgo.org JGO – Journal of Global Oncology

Downloaded from ascopubs.org by 146.185.203.237 on April 20, 2019 from 146.185.203.237


Copyright © 2019 American Society of Clinical Oncology. All rights reserved.
Table 1. Palliative Care Health Policies in Latin American Countries11,16 Throughout LA, palliative services are provided
National Cancer National Primary Care either at hospital-level care or in the community.
National Program Including Program Including Forty-three percent of the services in the region are
Country Law Palliative Care Palliative Care located exclusively in hospitals, where multidisci-
Argentina No Yes No plinary support teams comprised mainly of palli-
Bolivia No Yes No ative care physicians and nurses are the most
frequent model of palliative care. Approximately
Brazil No Yes Yes
one third of services in LA are provided at the
Chile No Yes Yes community level, with home care teams being the
Colombia Yes Yes No most frequent type of service provided.11,16
Costa Rica No Yes Yes The provision of palliative care is often carried out
Cuba No Yes Yes by teams working at hospitals who also work in
Dominican Republic No No No primary care centers—so-called multilevel
Ecuador No Yes No services—which account for 20% of all
community-level services provided in the region.
El Salvador No No No
These mixed services are most frequent in Costa
Guatemala No Yes No
Rica, Uruguay, and Chile.11
Honduras No No No
Most of the existing palliative services are provided
Mexico Yes Yes No
by a multidisciplinary team, consisting of a med-
Nicaragua No Yes No ical doctor, nurse, and often a psychologist, social
Panama Yes Yes Yes worker, or other health care professional. These
Paraguay No Yes No services are generally located in big cities, and
most are tailored to suit the adult population, as
Peru No Yes Yes
few programs exist for pediatric patients.34 Re-
Uruguay Yes Yes Yes
garding shortages of services throughout the re-
Venezuela No Yes Yes gion, six countries in the region have no hospice,
eight do not have home care teams, and 13 do not
inpatient and outpatient services, respectively. have palliative care service at community
Today, all countries in LA have some form of centers.11,35
palliative care provision,11 and in the past 5 years, As in other countries in the world, palliative care in
there has been a huge increase in available LA is commonly linked to cancer care, with
services. approximately a quarter of the services reported
WHO and the Worldwide Hospice Palliative Care to be exclusively for patients with oncologic con-
Alliance have classified global development of ditions. This linkage initially helped palliative care
palliative care services into levels, ranging from to be implemented within an already established
level 1 (no known hospice palliative care activity) to network of cancer care provision; however, it
level 4b (advanced integration of palliative care limited the provision of services for nononcologic
into the health system; Fig 1C).22 In LA, there is patients.
considerable heterogeneity in the level of devel- Proper palliative care infrastructure is one of the
opment of palliative services. With the exception of key components of the WHO Public Health Model
Chile (level 4a), Costa Rica (level 4a), and Argen- for integrating palliative care into a country’s health
tina (level 3b), most countries are considered to be care system.9 Despite important efforts being
at level 3a or 236 (Table 3 and Fig 1C). Within each made in different LA countries to improve access
country, palliative care provision is limited to large to palliative care, it is far from being accessible and
urban, privileged centers.33 affordable to the majority of the population that
The LA region has a total of 922 palliative care could benefit from this care; because palliative
services (1.63 services per million people), rang- care provision is centered at specialized hospitals,
ing from 0.024 services per million in Honduras to the community level often remains uncovered.
14.65 per million in Costa Rica. In comparison,
Austria, a level 4b country, has 29.4 services per PALLIATIVE CARE EDUCATION AND RESEARCH
million inhabitants.6 Almost half (46%) of the IN LA
existing services in the region are located in Argen- Education in palliative care in LA has been focused
tina and Chile, which account for only 10% of the predominantly on physicians. However, less than
total LA population.11,16 15% of physicians working in palliative care have

263 Volume 3, Issue 3, June 2017 jgo.org JGO – Journal of Global Oncology

Downloaded from ascopubs.org by 146.185.203.237 on April 20, 2019 from 146.185.203.237


Copyright © 2019 American Society of Clinical Oncology. All rights reserved.
A B

Countries with palliative care Countries with specific ADs legislation


legislation or plans
Countries with ADs included within
broader laws

Level 4b: advanced


integration into health system

Level 4a: preliminary


integration into health system

Level 3b: generalized


palliative care provision

Level 3a: isolated palliative


care provision

4 Level 2: capacity-building
3b activity

3a Level 1: no known palliative


2 care activity

Fig 1. Maps depicting


the current status of (A)
palliative care legislation received palliative-specific education as part of palliative teachers is limited. The regional average
and policies, (B) advanced their undergraduate training.36 Only 13.5% of is 14 teachers per country, and totals range from
directives (ADs) legislation, medical schools offer some kind of palliative care zero teachers in Bolivia and Honduras to 45
and (C) levels of palliative
studies in an undergraduate program (ranging teachers in Mexico. The number of nonmedical
care development in Latin
America. Data from just 1 hour of study to a full independent teachers is much lower, with a regional average of
adapted.11,15,16-22 study subject). Furthermore, the number of 1.5 teachers per country.11

264 Volume 3, Issue 3, June 2017 jgo.org JGO – Journal of Global Oncology

Downloaded from ascopubs.org by 146.185.203.237 on April 20, 2019 from 146.185.203.237


Copyright © 2019 American Society of Clinical Oncology. All rights reserved.
Table 2. ADs Legislation in Latin America15,17-21,28,29
Only for
Type of AD-Specific Notary Public or Witnesses Terminally Ill
Country Law Year Law Law Judge Required Required Patients
Panama Ley 68 2003 Federal No Optional Yes (n = 3) No
Mexico Ley de Voluntad Anticipada para el 2008 State Yes Optional (since 2012) Yes (n = 2) Yes
Distrito Federal
Mexico Reglamento de la Ley General de 2013 Federal No No Yes (n = 2) No
Salud en Materia de Prestación
de Servicios de Atención Médica
Uruguay Ley No. 1874. Voluntad Anticipada 2009 Federal Yes Optional Yes (n = 2) No
Argentina Ley 25.529 and Ley 26742 2009 Federal No Mandatory (since 2012) Yes (n = 2) No
2012
Brazil Resoluç~
ao CFM No. 1.995/2012 2012 Federal Yes Not specified Not specified No
Colombia Ley Consuelo Devis Saavedra 2014 Federal No Not specified Not specified Yes

Abbreviation: AD, advanced directive.

In a Chilean study, 25% of residents of various Identification and qualification of palliative teams
specialties reported that they had received some are heterogeneous. Although some teams through-
instruction in palliative care during their under- out the region have experienced and qualified pal-
graduate studies, and only 7% of these residents liative care specialists, others have merely completed
considered the training sufficient.37 In Colombia, a short seminars and/or online training courses.11
study among undergraduate students of medical
and nursing schools reported low levels of comfort ACCESS TO OPIOIDS IN LA
regarding their personal knowledge of relevant A country’s annual consumption of morphine has
palliative care subjects.38 been historically considered to represent the ex-
Postgraduate courses in palliative care exist in only tent to which opioids are used to treat cancer pain
10 of 19 LA countries, and these courses are still and an indicator to assess improvements in pain
predominantly available only for physicians.11 In management. Despite the fact that there has been
four of these countries, palliative care is accredited an overall increase in the level of reported opioid
as a specialty or subspecialty, and it is issued as a consumption in the region,40 the consumption of
certificate in the remaining six countries. Chile and opioids in LA in 2013 was 4.9 morphine-
Paraguay are two countries where palliative care equivalent milligrams per capita, far below the
training exists but remains underdeveloped; in world average of 62.27 mg per capita. By way of
Chile, palliative care is recognized but lacks any example, the average morphine-equivalent con-
specific training courses, and Paraguay has a sumption of opioids in the European Union and the
postgraduate course, but it is not accredited. Since United States is 42 and 143 times higher, respec-
2010, Argentina is the only country with accred- tively (Fig 2).41 According to the International
itation for palliative care nursing.11 Palliative care Narcotics Control Board, most South American
nursing care is also an underdeveloped initiative countries (ie, Venezuela, Guyana, Peru, Ecuador,
because it is isolated to only a few countries, Bolivia, Paraguay, and Suriname) have either in-
namely Argentina and Cuba. adequate or very inadequate levels of opioid an-
Palliative research groups are located in Chile, algesic consumption, less than the threshold of
Argentina, Mexico, Cuba, Colombia, Peru, Pan- 200 defined daily doses.40 Of particular impor-
ama, Dominican Republic, and Brazil; however, tance is the fact that opioid consumption per
their contribution to palliative care research in the capita is directly associated with the number of
region has been scarce. A total of 106 original re- palliative care services per million inhabitants in a
search publications have been identified through country,10 because even when palliative medi-
2011 in LA and the Caribbean. This accounts for cines are available, a well-implemented palliative
only 2.1% of global palliative care publications. care service is necessary to deliver adequate
These publications came from only 10 countries care.40
in the region, and more than half were from Access to opioid therapy requires both availability
Brazil. 39 and affordability.42 Limited resources decrease

265 Volume 3, Issue 3, June 2017 jgo.org JGO – Journal of Global Oncology

Downloaded from ascopubs.org by 146.185.203.237 on April 20, 2019 from 146.185.203.237


Copyright © 2019 American Society of Clinical Oncology. All rights reserved.
Table 3. Palliative Care Development in Latin America and the Caribbean11,16 Legal restrictions often limit not only storage and
Level of No. of No. of Services per sale of opioids, but also their prescription to pa-
Country Development31 Services Million Inhabitants tients. For example, some national laws prohibit or
Argentina 3b 151 3.76 restrict opioid use, limiting dosages and concen-
trations regardless of clinical context or medical
Bolivia 2 6 0.58
need.45 Other factors that contribute to the in-
Brazil 3a 93 0.48
accessibility of opioids for patients include unclear
Chile 4a 277 16.06 and burdensome regulatory requirements,40 lim-
Colombia 3a 23 0.50 ited communication and collaboration among
Costa Rica 4a 63 14.65 those who prescribe and those who regulate opi-
oids,35 lack of training and awareness among
Cuba 3a 51 4.54
medical professionals, fear of opioid addiction,
Dominican Republic 3a 8 0.80
diversion into illicit channels, and restrictive cul-
Ecuador 3a 12 0.83 tural attitudes.40
El Salvador 3a 4 0.64
Guatemala 3a 7 0.48 CULTURAL ASPECTS OF END-OF-LIFE CARE IN LA
Honduras 2 2 0.24 Delivering high-quality end-of-life care is depen-
Mexico 3a 119 1.06 dent not only on the availability of appropriate
Nicaragua 2 13 2.14
resources, but also on the creation of an environ-
ment that successfully integrates the patient and
Panama 3a 9 2.64
his or her family’s cultural values and beliefs into
Paraguay 3a 4 0.61 the process.46 Unfortunately, qualitative research
Peru 3a 12 0.42 into the influence of culture on the end-of-life
Uruguay 4a 23 7.00 process in LA is scarce, and most of the available
Venezuela 3a 45 1.56
information comes from the study of LA immi-
grants to the United States. Although this research
Total 922 1.53
is valuable and provides relevant data, it fails to
capture the influence of each nation’s specific
the capacity of governments to subsidize drugs values on the decision-making process of the
and limit the ability of patients to afford them.40 In patients, their families, and their health care
LA, it is common for even basic, inexpensive providers.
formulations to be either insufficient or completely Latino cultural values regarding end-of-life care
unavailable. According to a report from the Opioid have been identified in the literature, and it is
Price Watch Project, in 2015, oral morphine tab- recommended that every effort be made to in-
lets were not available in Mexico City, Mexico; Cali, tegrate them into palliative care delivery (Table 4).
Colombia; Guatemala City, Guatemala; or Rio de One of the most significant factors is the impor-
Janeiro, Brazil.43 tance of family participation in decisions involving
High opioid prices are associated with regulatory end-of-life care and advanced care planning. This
expenses, licensing, taxation, import duties, and participation can include the extended family of
poor distribution systems, all of which contribute to the patient, and many decisions are ultimately
unaffordability.40 These factors may have contrib- made through family consensus.50 Compared
uted to the findings of a cross-sectional study of with those living in the United States, Latino pa-
three LA nations, which found that the median tients with advanced cancer living in LA are more
price for oral morphine tablets is actually 5.8 times likely to prefer passive decisional control and share
lower in high-income countries than in LMICs.42 their decisions more often with both their families
As a result, the price of 1 month of injectable and their physicians.51 This may be in part a result
morphine is several times the minimum wage in of a more paternalistic approach to cancer care by
Mexico, where coverage of this drug is not in- health care providers in LA, because they are less
cluded in the public health system, leading to likely to disclose a grave prognosis and more likely
inaccessibility or catastrophic out-of-pocket ex- to withhold information from the patient at the
pense. Conversely, in Costa Rica and Chile, both family’s request,52 which in turn may lead to late
of which have less fragmented and more compre- referrals to palliative care services.53 Even though
hensive health systems,44 a wider variety of opi- patients in LA may favor a passive or shared
oids and formulations is available for free to decision-making process, the available data show
patients.43 that most of them prefer to receive complete

266 Volume 3, Issue 3, June 2017 jgo.org JGO – Journal of Global Oncology

Downloaded from ascopubs.org by 146.185.203.237 on April 20, 2019 from 146.185.203.237


Copyright © 2019 American Society of Clinical Oncology. All rights reserved.
Fig 2. Consumption of
opioids in morphine Morphine Equivalence Consumption (mg per capita)
equivalents, 2013. Data
Haiti 0.16
adapted.41 Nicaragua 0.70
Dominican Republic 0.80
Bolivia 0.85
Venezuela 1.16
Honduras 1.25
Guatemala 1.40
Ecuador 1.58
El Salvador 2.07
Guyana 2.08
Jamaica 3.75
Panama 3.88
Mexico 3.92
Peru 4.04
Belize 5.01
Bahamas 7.30
Colombia 8.74
Uruguay 9.11
Costa Rica 10.36
Brazil 11.11
Argentina 13.83
Chile 16.20
Latin America 4.99
European Union 210.93
United States 717.89
World 62.27
0.00 100.00 200.00 300.00 400.00 500.00 600.00 700.00 800.00

information about their diagnosis and prognosis.54 preference for a family-centered approach to ad-
Spiritual support is also important. For Catholic vanced care planning.56 Thus, it seems imperative
Mexican-American patients, religiosity and spiri- for LA countries with AD legislation to provide
tuality are essential aspects that lead to a good education to health care personnel and to identify
death. Many believe that God is the only one who barriers to signing of ADs, with a particular em-
has control over birth and death and, hence, death phasis on the inclusion of the patient’s family in the
should not be fought against with life-extending process.
measures.55 In conclusion, cancer incidence will continue to
As a result of the relatively recent introduction of grow in LMICs,3,44 which will lead to increased
legislated palliative care in LA, there is a lack of socioeconomic pressure on health care systems.
information regarding attitudes of patients toward High-quality end-of-life care should be prioritized
planning end-of-life care. Among Latino elders to improve patient and family quality of life and to
living in California, those with higher levels of reduce and eventually avoid the economic burden
cultural assimilation, education, and autonomy of costly inpatient care for advanced disease. In
were more likely to sign ADs. Most also expressed LA, there are notable inequalities between and

Table 4. Latin American Cultural Values Involved in the End-of-Life Care Process47-49
Value Definition Importance for End-of-Life Care
Familismo Emphasis placed on family loyalty, connectedness, and Discuss family’s role up front
interdependence. Broad support networks including Engage family members in advance care planning
close friends and community leaders. Assess for caregiver burden continuously during the process
Personalismo Development of warm, personal relationship with the Foster warm relationships with the patient and relatives
medical professional. The means of professional care are Avoid hurrying or imposing decisions
as important as the treatment received.
Respect Dictates differential behavior toward others based on Use of formal titles to establish hierarchical relationships
person’s authority, age, sex, and socioeconomic status. Patients and families may consult respected members of their
communities as healers or priests
Fatalism A belief in fate that one’s future is preordained or not under Identify specific fatalistic beliefs
one’s control. Understand fatalism as a coping strategy
Religiosity and Prayer and faith in God are the major sources of comfort and Coping strategy
spirituality ways to cope with symptoms and dying. Engage community religious leaders in advanced care planning

267 Volume 3, Issue 3, June 2017 jgo.org JGO – Journal of Global Oncology

Downloaded from ascopubs.org by 146.185.203.237 on April 20, 2019 from 146.185.203.237


Copyright © 2019 American Society of Clinical Oncology. All rights reserved.
within countries regarding the existence of com- palliative infrastructure, increase the availability
prehensive legislative frameworks and high-level of pain medication, and provide adequate training
palliative care infrastructure and training. We to all health care providers taking care of patients
believe that tackling these inequalities is the with cancer. Additionally, it is fundamental for
single largest challenge currently facing health researchers and health care systems to report
care systems in LA. Successfully doing so will and publish local data on the provision of end-
allow limited resources to be shifted from costly of-life care to identify and overcome current short-
and prolonged inpatient end-of-life care to more comings. Qualitative data on the cultural perspec-
primary and secondary prevention, which in turn tives and social aspects of end-of-life decisions are
could potentially reduce national mortality rates. also urgently needed to design and provide in-
To provide high-quality end-of-life care, countries dividualized care suitable for each patient’s pref-
throughout the LA region should design and follow erences and beliefs. To urgently address the
comprehensive palliative care plans and fully in- socioeconomic burden of cancer in LA, sustained
tegrate end-of-life care into their national health efforts are needed to improve education, enhance
care laws and regulations. Furthermore, patients research, expand access to medication, and
with cancer in LA should be provided with the design a culturally appropriate approach for pro-
option to engage in advanced care planning from viding compassionate and appropriate end-of-life
the outset of their disease, and ADs should be care for patients with cancer in the LA region.
made legal, easily communicated, and accessi- DOI: https://doi.org/10.1200/JGO.2016.005579
ble. There is also an urgent need to improve Published online on jgo.org on August 24, 2016.

AUTHOR CONTRIBUTIONS For more information about ASCO’s conflict of interest policy,
Conception and design: Enrique Soto-Perez-de-Celis, Yanin please refer to www.asco.org/rwc or ascopubs.org/jco/site/ifc.
Chavarri-Guerra, Tania Pastrana, Rossana Ruiz-Mendoza, Enrique Soto-Perez-de-Celis
Paul E. Goss
Travel, Accommodations, Expenses: Amgen, Bristol-Myers
Collection and assembly of data: Enrique Soto-Perez-de-Celis, Squibb
Yanin Chavarri-Guerra, Tania Pastrana, Rossana Ruiz-Mendoza,
Alexandra Bukowski Yanin Chavarri-Guerra
Data analysis and interpretation: Alexandra Bukowski Consulting or Advisory Role: Roche
Manuscript writing: All authors Speakers’ Bureau: Novartis
Final approval of manuscript: All authors Research Funding: Roche
Accountable for all aspects of the work: All authors Tania Pastrana
No relationship to disclose

AUTHORS’ DISCLOSURES OF Rossana Ruiz-Mendoza


POTENTIAL CONFLICTS OF INTEREST No relationship to disclose
The following represents disclosure information provided by Alexandra Bukowski
authors of this manuscript. All relationships are considered No relationship to disclose
compensated. Relationships are self-held unless noted. I =
Immediate Family Member, Inst = My Institution. Relation- Paul E. Goss
ships may not relate to the subject matter of this manuscript. No relationship to disclose

Affiliations
Enrique Soto-Perez-de-Celis and Yanin Chavarri-Guerra, Instituto Nacional de Ciencias Médicas y Nutrición Salvador Zubirán,
Mexico City, Mexico; Enrique Soto-Perez-de-Celis, Yanin Chavarri-Guerra, Rossana Ruiz-Mendoza, Alexandra Bukowski, and Paul E.
Goss; The Global Cancer Institute; Rossana Ruiz-Mendoza, Alexandra Bukowski, and Paul E. Goss, Avon International Breast Cancer
Research Program, Massachusetts General Hospital, Boston, MA; Tania Pastrana, Alexandra Bukowski, and Paul E. Goss,
Rheinisch-Westfälische Technische Hochschule Aachen University, Aachen, Germany; and Rossana Ruiz-Mendoza, Universidad
Peruana Cayetano Heredia, Instituto Nacional de Enfermedades Neoplásicas, Lima, Peru.

REFERENCES
1. Terzic A, Waldman S: Chronic diseases: The emerging pandemic. Clin Transl Sci 4:225-226, 2011
2. Islam SM, Purnat TD, Phuong NT, et al: Non-communicable diseases (NCDs) in developing countries: A symposium
report. Global Health 10:81, 2014

268 Volume 3, Issue 3, June 2017 jgo.org JGO – Journal of Global Oncology

Downloaded from ascopubs.org by 146.185.203.237 on April 20, 2019 from 146.185.203.237


Copyright © 2019 American Society of Clinical Oncology. All rights reserved.
3. Goss PE, Lee BL, Badovinac-Crnjevic T, et al: Planning cancer control in Latin America and the Caribbean. Lancet
Oncol 14:391-436, 2013
4. Ferlay J, Soerjomataram I, Ervik M, et al: GLOBOCAN 2012 v1.0, Cancer Incidence and Mortality Worldwide: IARC
CancerBase No. 11. Lyon, France, International Agency for Research on Cancer, 2013
5. Justo N, Wilking N, Jönsson B, et al: A review of breast cancer care and outcomes in Latin America. Oncologist 18:248-256, 2013
6. World Palliative Care Alliance, World Health Organization: Global Atlas of Palliative Care at the End of Life. http://www.
who.int/cancer/publications/palliative-care-atlas/en/
7. Sepúlveda C, Marlin A, Yoshida T, et al: Palliative care: The World Health Organization’s global perspective. J Pain
Symptom Manage 24:91-96, 2002
8. Gwyther L, Krakauer E: WPCA policy statement on defining palliative care. Worldwide Palliative Care Alliance. http://
www.thewhpca.org/resources/category/whpca-position-statements
9. Stjernswärd J, Foley KM, Ferris FD: The public health strategy for palliative care. J Pain Symptom Manage 33:486-493, 2007
10. Pastrana T, Torres-Vigil I, De Lima L: Palliative care development in Latin America: An analysis using macro indicators.
Palliat Med 28:1231-1238, 2014
11. Pastrana T, De Lima L, Wenk R, et al: Atlas de Cuidados Paliativos de Latinoamérica. Houston, TX, IAHPC Press, 2012
12. Ministerio de Salud Pública República Oriental del Uruguay: Plan Nacional de Cuidados Paliativos. http://www.msp.
gub.uy/sites/default/files/PLAN%20NACIONAL%20CP%20VERSION%20SETIEMBRE%202013.pdf
13. Ministerio de Salud Panamá: Programa Nacional de Cuidados Paliativos. http://190.34.154.93/rncp/sites/all/files/
Cuidados%20paliativos%20(2).pdf
14. Estados Unidos Mexicanos, Secretarı́a de Salud: Norma oficial mexicana NOM-011-SSA3-2014, criterios para la
atención de enfermos en situación terminal a través de cuidados paliativos. http://www.dof.gob.mx/nota_detalle.php?
codigo=5375019&fecha=09/12/2014
15. Congreso de Colombia: Ley Consuelo Devis Saavedra, mediante la cual se regulan los servicios de cuidados paliativos
para el manejo integral de pacientes con enfermedades terminales, cronicas, degenerativas e irreversibles en
cualquier fase de la enfermedad de alto impacto en la calidad de vida. Law No. 1733. http://wsp.presidencia.gov.co/
Normativa/Leyes/Documents/LEY%201733%20DEL%2008%20DE%20SEPTIEMBRE%20DE%202014.pdf
16. Pastrana T, De Lima L, Wenk R, et al: Edición Cartográfica del Atlas de Cuidados Paliativos en Latinoamérica. Houston,
TX, International Association for Hospice and Palliative Care, 2013
17. República de Panama Asamblea Legislativa: Que regula los derechos y obligaciones de los pacientes, en materia de
información y de decisión libre e informada. Ley 68 de 20 de Noviembre del a~
no 2003. http://www.css.gob.pa/Ley%
2068%20del%2020%20de%20noviembre%20de%202003.pdf
18. Asamblea Legislativa del Distrito Federal: IV Legislatura: Ley de voluntad anticipada para el Distrito Federal in Federal.
http://www.aldf.gob.mx/archivo-077346ece61525438e126242a37d313e.pdf
19. El Senado y la Cámara de Representantes de la República Oriental del Uruguay: Voluntad Anticipada. Ley N° 18.473.
https://sip21-webext.parlamento.gub.uy/temporales/leytemp9746455.htm
20. El Senado y la Cámara de Diputados de la Nación Argentina: Modifı́case la Ley N° 26.529 que estableció los derechos
del paciente en su relación con los profesionales e instituciones de la Salud. Ley 26.742. http://www.infoleg.gov.ar/
infolegInternet/anexos/195000-199999/197859/norma.htm
~
21. Conselho Federal de Medicina: Disp~ oe sobre as diretivas antecipadas de vontade dos pacientes. RESOLUÇAO CFM n°
1.995/2012. http://www.portalmedico.org.br/resolucoes/CFM/2012/1995_2012.pdf
22. Lynch T, Connor S, Clark D: Mapping levels of palliative care development: A global update. J Pain Symptom Manage
45:1094-1106, 2013
23. Economist Intelligence Unit: The 2015 Quality of Death Index. Country profiles. Ranking palliative care across the
world. http://www.eiuperspectives.economist.com/healthcare/2015-quality-death-index
24. Law Reform Commission: Bioethics: Advance care directives. (LRC 94-2009). http://www.lawreform.ie/_fileupload/
reports/rbioethics.pdf
25. Kuhse H, Singer P (eds): Advanced directives, in: A Companion to Bioethics (ed 2). New York, NY, Wiley-Blackwell, 2009, p 299
26. Congress.gov: Patient Self-Determination Act of 1990. H.R. 4449 (1990). https://www.congress.gov/bill/101st-
congress/house-bill/4449
27. Council of Europe: Convention for the protection of human rights and dignity of the human being with regard to the
application of biology and medicine: Convention on Human Rights and Biomedicine. Oviedo, 4.IV.1. https://rm.coe.
int/CoERMPublicCommonSearchServices/DisplayDCTMContent?documentId=090000168007cf98
28. Estados Unidos Mexicanos, Presidencia de la República: Reglamento de la Ley General de Salud en materia de
prestación de servicios de atención médica. http://www.salud.gob.mx/unidades/cdi/nom/compi/rlgsmpsam.html
29. El Senado y la Cámara de Diputados de la Nación Argentina: Derechos del Paciente, Historia Clı́nica y Consentimiento
Informado. Ley 26.529. http://www.infoleg.gov.ar/infolegInternet/anexos/160000-164999/160432/norma.htm

269 Volume 3, Issue 3, June 2017 jgo.org JGO – Journal of Global Oncology

Downloaded from ascopubs.org by 146.185.203.237 on April 20, 2019 from 146.185.203.237


Copyright © 2019 American Society of Clinical Oncology. All rights reserved.
30. Comisión Nacional de Bioética: Voluntades anticipadas: Reflexiones bioéticas sobre el final de la vida. CONBIOETICA.
http://conbioetica-mexico.salud.gob.mx/descargas/pdf/voluntades_anticipadas.pdf
31. Consejo Nacional del Notariado Mexicano: Documento de Voluntad Anticipada. http://www.notariadomexicano.org.
mx/prensa/tips_not/tips_vida_diaria4.pdf
32. Contreras C: Voluntad anticipada impera en hospitales privados. http://www.excelsior.com.mx/comunidad/2015/01/
08/1001508
33. Pastrana T, Centeno C, De Lima L: Palliative care in Latin America from the professional perspective: A SWOT analysis.
J Palliat Med 18:429-437, 2015
34. Varela A, Dussel V, Barfield R, et al: Perceived resources and barriers to pediatric palliative care among healthcare
practitioners attending the V Latin American Palliative Care Association (ALCP) meeting (755). J Pain Symptom
Manage 41:306, 2011
35. Pastrana T, Eisenchlas J, Centeno C, et al: Status of palliative care in Latin America: Looking through the Latin America
Atlas of Palliative Care. Curr Opin Support Palliat Care 7:411-416, 2013
36. Wenk R, Bertolino M: Palliative care development in South America: A focus on Argentina. J Pain Symptom Manage
33:645-650, 2007
37. Vial P, Ibá~
nez P, Uma~
na A, et al: [Self-assessment about proficiency on palliative care in a cohort of residents]. Rev
Med Chil 132:445-452, 2004
38. Pastrana T, De Lima L, Wenk R: Multicenter study on levels of comfort and interest in palliative care among un-
dergraduate students in Colombia. Med Paliat 22:9, 2015
39. Pastrana T, De Lima L, Eisenchlas J, et al: Palliative care research in Latin America and the Caribbean: From the
beginning to the Declaration of Venice and beyond. J Palliat Med 15:352-358, 2012
40. International Narcotics Control Board: Availability of internationally controlled drugs: Ensuring adequate access for
medical and scientific purposes. http://www.incb.org/documents/Publications/AnnualReports/AR2015/English/
Supplement-AR15_availability_English.pdf
41. University of Wisconsin-Madison Pain and Policy Study Group: Opioid consumption data. http://www.painpolicy.wisc.
edu/opioid-consumption-data
42. De Lima L, Pastrana T, Radbruch L, et al: Cross-sectional pilot study to monitor the availability, dispensed prices, and
affordability of opioids around the globe. J Pain Symptom Manage 48:649-659.e1, 2014
43. International Association for Hospice and Palliative Care: Opioid price watch. http://hospicecare.com/resources/
projects/opioid-price-watch/
44. Strasser-Weippl K, Chavarri-Guerra Y, Villarreal-Garza C, et al: Progress and remaining challenges for cancer control in
Latin America and the Caribbean. Lancet Oncol 16:1405-1438, 2015
45. Manjiani D, Paul DB, Kunnumpurath S, et al: Availability and utilization of opioids for pain management: Global issues.
Ochsner J 14:208-215, 2014
46. Bosma H, Apland L, Kazanjian A: Cultural conceptualizations of hospice palliative care: More similarities than dif-
ferences. Palliat Med 24:510-522, 2010
47. Adames HY, Chavez-Due~ nas NY, Fuentes MA, et al: Integration of Latino/a cultural values into palliative health care: A
culture centered model. Palliat Support Care 12:149-157, 2014
48. Flórez KR, Aguirre AN, Viladrich A, et al: Fatalism or destiny? A qualitative study and interpretative framework on
Dominican women’s breast cancer beliefs. J Immigr Minor Health 11:291-301, 2009
49. Cruz-Oliver DM, Talamantes M, Sanchez-Reilly S: What evidence is available on end-of-life (EOL) care and Latino
elders? A literature review. Am J Hosp Palliat Care 31:87-97, 2014
50. Born W, Greiner KA, Sylvia E, et al: Knowledge, attitudes, and beliefs about end-of-life care among inner-city African
Americans and Latinos. J Palliat Med 7:247-256, 2004
51. Yennurajalingam S, Noguera A, Parsons HA, et al: A multicenter survey of Hispanic caregiver preferences for patient
decision control in the United States and Latin America. Palliat Med 27:692-698, 2013
52. Baile WF, Lenzi R, Parker PA, et al: Oncologists’ attitudes toward and practices in giving bad news: An exploratory
study. J Clin Oncol 20:2189-2196, 2002
53. Castro-Sanchez A, Ramos-Elias PA, Soto-Perez-De-Celis E, et al: Trends in time to referral to palliative care (PC) at a
tertiary care center in Mexico City. J Clin Oncol 32, 2014 (suppl; abstr e20539)
54. Palma A, Cartes F, González M, et al: [Information disclosure and decision making preferences of patients with
advanced cancer in a Pain and Palliative Care Unit in Chile]. Rev Med Chil 142:48-54, 2014
55. Ko E, Cho S, Perez RL, et al: Good and bad death: Exploring the perspectives of older Mexican Americans. J Gerontol
Soc Work 56:6-25, 2013
56. Kelley AS, Wenger NS, Sarkisian CA: Opiniones: End-of-life care preferences and planning of older Latinos. J Am
Geriatr Soc 58:1109-1116, 2010

270 Volume 3, Issue 3, June 2017 jgo.org JGO – Journal of Global Oncology

Downloaded from ascopubs.org by 146.185.203.237 on April 20, 2019 from 146.185.203.237


Copyright © 2019 American Society of Clinical Oncology. All rights reserved.

You might also like