CP en Latinoamérica
CP en Latinoamérica
CP en Latinoamérica
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
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
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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
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4 Level 2: capacity-building
3b activity
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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
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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
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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
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.
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