- Email: [email protected]
Palliative Care Development in South America: A Focus on Argentina
Vol. 33 No. 5 May 2007
Journal of Pain and Symptom Management
645
Special Article
Palliative Care Development in South America: A Focus on Argentina Roberto Wenk, MD, and Mariela Bertolino, MD Argentine Program for Palliative Medicine (R.W., M.B.), Foundation of the Medical Federation of the Province of Buenos Aires (FEMEBA); Palliative Care Unit Hospital Sommer and Palliative Care Unit (R.W., M.B.), Hospital Tornu, Argentinean Association for Medicine and Palliative Care (M.B., R.W.); and Latin American Association for Palliative Care (R.W., M.B.), Buenos Aires, Argentina
Abstract Many Latin American and Caribbean national health systems mainly focus on disease prevention, prenatal assistance, undernourishment, etc. They still do not have the conditions for developing palliative care (PC). In general, quality of life during the dying process is poor, with fragmented assistance, uncontrolled suffering, poor communication between professionals, patients, and families, and a great burden on family caregivers. The development of PC in the region started around 1981, but it is still not available to an acceptable number of patients. J Pain Symptom Manage 2007;33:645e650. Ó 2007 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved. Key Words Palliative care, South America, measures of resources, processes, results and outcomes
Accepted for publication: February 1, 2007.
patients, and families, and a great burden on family caregivers.2 Palliative care (PC) in LA has been successful in terms of the number of PC teams and programs and opioid consumption.3 Yet, it has not been successful in coverage of the target population: PC is still not available to an acceptable percentage of terminally ill patients in LA. PC teams and programs, working inside and outside the health systems, have had different rates of success in justifying the need for palliative care. Their success may link to their ability to make the necessary changes in the culture of their institutions and countries.4 According to the changes, national health systems can be grouped into those that 1) are still not aware of the need for PC, 2) recognize the need but are concerned about the solutions, 3) accept PC as a health priority but do nothing important to promote its implementation, and 4) do everything possible to facilitate PC implementation.
Ó 2007 U.S. Cancer Pain Relief Committee Published by Elsevier Inc. All rights reserved.
0885-3924/07/$esee front matter doi:10.1016/j.jpainsymman.2007.02.002
Introduction Latin America and the Caribbean (LA) is a developing region comprising 35 different countries, with a population of 551 million. It is challenged by common economic, political, and cultural factors. Many national health systems must deal with inadequate infrastructures, poor administrative systems, poverty, limited educational opportunities, etc.1 Most of these countries fail to provide appropriate care for dying patients. In general, quality of life during the dying process is poor, with fragmented assistance, uncontrolled suffering, poor communication between professionals,
Address reprint requests to: Roberto Wenk, MD, Belgrano 585, 2900 San Nicola´s, Argentina. E-mail: [email protected]
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Even as PC has scaled up in the last 20 years, groups 1, 2, and 3 are predominant. Currently, there is a consensus in the region that there is an increasing need for PC as an essential component of health care services. The reasons are the following: 1. The prevalence of chronic diseases is increasing: cardiovascular disease, cancer, chronic respiratory diseases, and diabetes are the leading causes of mortality and disability.5 2. The population is aging: older persons represent 8% of the total population, and in 2025, this figure will rise to 14%.6 3. Late disease diagnosis and the lack of curative facilities in resource-poor areas prompt PC as an essential component of patient care.
PC Status We describe PC status in LA, evaluating potential measures of resources, processes, results, and outcomes.7 The description highlights unmet needs and how they are mostly met in Argentina. We acknowledge that the information could be incomplete because of the scarce regional data. We include some data from Argentina that may be similar to those of other countries.
Structure Support of the Health Authorities. In most LA countries, support of health authorities is insufficient. Their governments are unable and/or reluctant to fulfill the demand for PC. Data from a survey on 566 LA professionals8 indicate that 70% of them do not consider PC a priority in their country’s health policies. Data provided by 17 PC leaders in different LA countries9 indicate that, in 80% of the countries, PC is not yet recognized as a discipline and is not included systematically in the free public or private health system. There are reported national PC programs in seven countries.8 Three countries (Chile, Costa Rica, and Cuba) are active and support PC nationwide. Several facts may account for their effectiveness: 1) they are supported by a health policy, 2) they developed with
Vol. 33 No. 5 May 2007
established plans based on needs assessments, and 3) they interact with a primary care system that refers patients and collaborates on their care. In an increasing number of countries, effective advocacy has motivated health authorities to recognize the needs of terminally ill patients and to focus on PC development. In Argentina, there is not yet a national health policy to implement PC. There are different regulations that promote and guarantee PC and opioid availability, but they are ignored. Three provinces (Rı´o Negro, Mendoza, and Chaco) have laws and two (Neuque´n and Tierra del Fuego) have government bills to promote PC. Economy. Governments are underfunded to finance health system infrastructure, assistance centers, infectious disease control, prenatal assistance, malnutrition, etc. But these same health systems continue to pay for lifeprolonging, and sometimes futile, interventions,10 rather than providing quality PC. The lack of research data on the costs associated with PC as compared with other health care costs also contributes to this situation. In most countries in LA, PC is still not recognized as a medical specialty, and PC teams and programs are difficult to finance because the health systems do not pay, or underpay, for the PC services. This makes sustainability an enormously difficult issue that most solve with mixed approaches: resources from charity, work forfree on a volunteer basis, and care paid by the patient (when it is possible) or by the health insurance (some accept PC and pay for it). Opioid Availability and Accessibility. LA consumes less than 1% of the global consumption of morphine.11 Reasons for the underuse are lack of physician and pharmacist training in opioid analgesia (and other specific medications), overly restrictive laws and regulations for opioid prescription and storage, and the high cost of opioids. There are outdated and nonscientific prescribing regulations that restrict the use of opioid analgesics: 50% of 566 professionals surveyed consider these regulations as barriers to opioid use.8 Different opioids are available, but the high prices of most of them, when related to the mean monthly regional incomes,
Vol. 33 No. 5 May 2007
Palliative Care in South America
limit their actual accessibility and utilization.12,13 Some countries have increased their use of opioids, but most are below the global mean of 6.2 mg per capita.14 This increase is the result of changes in the policies that restricted their use, but it is also the result of the work of PC teams that guarantee the provision of opioids without charge or at low cost with compound and generic preparations.15 In Argentina, the availability of commercial and compounded ‘‘weak’’ (codeine, propoxyphene, and tramadol) and ‘‘strong’’ opioids (morphine, methadone, oxycodone, and fentanyl) is good. Although morphine and codeine are supposed to be supplied for free to all patients, there are access difficulties. Provision is variable to inpatients and limited to outpatients in public hospitals. Distribution is variable in distant cities and regions. PC Teams and Programs. There are unknown numbers of PC teams and programs in the region, and there is no information on how many are successful in their development or their service delivery. They vary among countries, cities, and also each other. They operate differently, depending upon their development. They are located in the community or in hospitals, and operate in different settings with unique experiences. They treat a majority of cancer patients. In general, most PC programs provide partial care:16 teams consisting of one or two disciplines with part-time staff, with mixed or exclusive home or outpatient care, distance care,17 and institutional activity, but no specific facilities (mobile teams without their own beds). Full PC programs with interdisciplinary teams providing 24/7 care in a consulting room, at home, in daycare, and in the hospital (with their own beds) are not the rule. The situation in Argentina is as follows: The total number of PC teams is about 75. The majority are in large cities, most in Buenos Aires, Rosario, and Cordoba. Some were created more than 20 years ago, but many in the last five years. Some are supported by nongovernmental organizations. In the public health system, most are established in hospitals that deliver inpatient care. In the social security
647
system, most are freestanding services that deliver home care. Many teams are functional: a trained professional works with professionals of other disciplines according to the patient’s needs. There are more positions available in PC, but most PC professionals earn fees with positions in other disciplines. Only a few PC teams have their own inpatient facilities. There are 38 PC beds in entire the countryd18 in Palliative Care Units Hospital Sommer - FEMEBA and Hospital Tornu - FEMEBA, the Palliative Care Unit for Adults Rosario (UCPAR ) and 20 in hospices. Home care has had limited development. In Buenos Aires city, with 33 hospitals, the public system does not deliver home care. In Rosario, Rı´o Negro, and Neuque´n, the public health system does deliver home care. Daycare facilities have had minimal development (available at Pallium and Palliative Care Units Hospital Sommer - FEMEBA and Hospital Tornu - FEMEBA). There are two hospices with inpatient facilities (‘‘San Camilo’’ in Vicente Lopez, Buenos Aires, and ‘‘Casa de la Bondad’’ in Cordoba City) and one that provides home care (‘‘Madre Teresa’’ in Luja´n, Buenos Aires). There are no specific facilities for PC patients who need long-term hospitalization. Geriatric facilities do not care for PC patients, except for those with dementia. Patients with uncontrolled symptoms are admitted to acute care facilities, and in most cases, they cannot be discharged if they lack adequate family or social support.
National PC Associations. National associations are important to promote national standards in PC education and practice, and to protect the interests of their members. A survey conducted in 20 LA countries in March 2006 indicates that only Argentina, Bolivia, Brazil, Colombia, Mexico, Paraguay, Peru, Uruguay, and Venezuela have national associations.18 Not all are active. Argentina’s was the first in the region (1991). The Argentinean Association for Medicine and Palliative Care (AAMyCP) is an interdisciplinary scientific
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association created in 1991 with approximately 300 members in 13 of the 23 provinces. It conducts scientific programs, has international academic cooperation (with France and Spain), and effects of diffusion to the community.
Process Education. Current education and training fail to provide health professionals with the attitudes, knowledge, and skills required to provide good care for the dying patient. The results of an online survey focused on the level, amount, and type of education in the region indicate that, although a majority (80%) of the respondents deliver PC to patients with different conditions, fewer than 15% received any specific education in their undergraduate training, and most have gained their knowledge through lectures and self-education programs after graduation. Only a few had the possibility to receive education that included both classroom and bedside teaching. Results also indicate that 91% of the respondents performed some kind of learning activity during the last five years.19 There is a continuous and growing trend among health care professionals to learn about end-of-life care issues. There are more opportunities to practice and improve teamwork and problem solving, i.e., courses with a large amount of clinical practice, fellowships in clinical units, residency programs, e-teaching, etc. We need to identify the best academic groups and teaching protocols to encourage their duplication. Most of the programs started teaching to share what they thought proved useful. Their activity pushed the development of PC in the region for more than 15 years, but it is now time to review, and perhaps revise, the education and training activities. The educational opportunities in Argentina include the following: There are multiple graduate education programs with different formats: classroom based, classroom-bedside based, workshops, advanced seminars, and e-teaching. Most are interdisciplinary. Some have collaboration from foreign universities (Oxford, UK and Calgary, Canada).
Vol. 33 No. 5 May 2007
There is little PC undergraduate education for physicians and nurses; nursing schools are more interested in PC. Opportunities for comprehensive education and training in PC are available in two cities: -- Buenos Aires: programs for physicians include a three-year, 40hours-per-week opportunity and an interdisciplinary residency (two years, 40 hours per week). -- Rosario: residency for physicians. Certification in PC by the AAMyCP and the National Academy of Medicine started in 2005. The College of Physicians of the Province of Santa Fe recognized PC as a discipline in 2006. Shortly, residency requirement and licensure examinations will be required in the country. This is a positive precedent for the region.
Research. There is a small amount of unshared research activity with heterogeneous quality. The results of an online survey to obtain information on PC research in LA countries20 showed that there is very limited research activity in the region. The reasons are limited resources, minimal expertise in research, and scarce availability of trained researchers and training opportunities. Although, almost always, clinical practice is viewed as urgent, research is just important.21 Clearly, there is an enormous need to facilitate PC research activity. The Latin American Association for Palliative Care (ALCP) task force will assist by 1) formulating a research agenda according to regional needs, 2) developing protocols for multicenter studies, and 3) supporting those who conduct research. Assistance Activity. Due to the lack of data collection and analysis, there is limited regional or individual country information about the number of patients who receive PC; how and where they die; practices; and clinical, organizational, and economic issues related to the caring process. We need to identify the best way to deliver PC in the region and which models can be duplicated.
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Palliative Care in South America
Output PC Availability, Accessibility, and Affordability. It is estimated that 5%e10% of LA patients who need PC receive it. Ninety-seven percent of PC provision is available in large cities and 3% in small cities/rural areas. More than 50% of patients cannot pay for the services or medications they receive.8 These figures highlight inadequate availability, accessibility, and affordability. In most cases, though not in all, these factors are responsible for the small percentage of patients who receive PC. In Argentina, the Hospital Sommer covers an area with 710,000 inhabitants. Its free PC service is active 24/7, delivers integrated care in the office, at home, or in hospital in its PC unit, and provides all the medication. According to its target population, the service should care for 2,200 cancer patients per year (three cancer patients 1,000 inhabitants year), but the service only cares for 300 new patients per year (11% of the patients who need PC). Making services and medications available is important but may be not enough.22 It is important to include PC in national health care policies, to graft it onto existing services, and to integrate it within mainstream medicine. But this may also not be enough. Only systems with coordinated cooperation and interaction between primary health care services and PC teams will increase the coverage of the target population.23 Primary care professionals with basic training in PC will 1) identify target patients, 2) facilitate their entry into the health system, 3) treat those with uncomplicated symptoms, and 4) continue long-term contact. PC teams, which generally reach only a minority of patients, will 1) teach primary care physicians and nurses, 2) collaborate and communicate on the care of patients, and 3) treat patients whose complex pain and suffering is beyond the expertise of the primary care professional.
Outcome It is impossible to describe the changes in end-of-life care that are due to PC provision. Its value is anticipated rather than demonstrated. It is assumed, rather than known, what patients and families receive at the end of life. Evidence about how PC reduces the
649
patients’ suffering is lacking. Outcomes measurement is a pending task. The ALCP is developing a regional database aimed at obtaining information about the regional PC providers, patients, services, and outcomes. Simple outcome measures relevant to LA will allow us to learn how effective PC is and how its effectiveness relates to its providers, epidemiological issues, practices, and organizational and economic factors.
Comment There is in the region an increasing need for PC, and many professional and nonprofessional people are working toward this end. However, the fact that most health systems do not conceptualize PC as an important element of health care may jeopardize their work. Moreover, the lack of knowledge about endof-life care in the region worsens this situation. The ALCP must help PC providers to both acquire information on the quality of end-oflife care and advocate with the health authorities to consider end-of-life care a public health problem.
References 1. Bruera E. Palliative care delivery in Latin America: obstacles and solutions. http://www.whocancerpain. wisc.edu/eng/spring96/palliative.html. Accessed March 22, 2007. 2. Stjernsward J, Pampallona S. Palliative medicine: A global perspective. In: Doyle D, Hanks G, eds. Oxford textbook of palliative medicine, 2nd ed. Oxford: Oxford University Press, 1998, pp. 1227e1245. 3. Singer PA, Bowman KW. Quality end-of-life care: a global perspective. BMC Palliat Care 2002;1(4)10. 1186/1472-684X-1-4. http://www.biomedcentral. com/1472-684X/1/4. Accessed March 22, 2007. 4. Bruera E. The development of a palliative care culture. J Palliat Care 2004;20(4):316e319. Accessed March 22, 2007. 5. Pan American Health Organization, World Health Organization. Regional strategy and plan of action on an integrated approach to the prevention and control of chronic diseases, including diet, physical activity, and health. 47th Directing council, 58th session of the regional committee. http://www. paho.org/English/gov/cd/CD47e17rv-e.pdf. Accessed March 22, 2007. 6. Pan American Health Organization, World Health Organization. Health and aging. 26th Pan
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American sanitary conference. 54th Session of the regional committee. http://www.paho.org.english/ gov/csp/csp26-13-e.pdf. Accessed March 22, 2007. 7. Higginson I. Clinical and organizational issues in palliative care. In: Doyle D, Hanks GWC, MacDonald N, eds. Oxford textbook of palliative medicine, 2nd ed. Oxford: Oxford University Press, 1998, pp. 67e81. 8. Torres I. Determinants of quality of advanced cancer care in Latin America. A look at five countries: Argentina, Brazil, Cuba, Mexico and Peru. Doctoral dissertation. Houston: The University of Texas School of Public Health, 2004. 9. Wenk R. Palliative care education in Latin America. Oral presentation. In: Abstracts of the III Congreso de la Asociacio´n Latinoamericana de Cuidados Paliativos. Isla Margarita, Venezuela 2006. 10. Wenk R. The development of palliative medicine in Latin America. In: Bruera E, Higginson I, Ripamonti C, Von Gunten C, eds. Textbook of palliative medicine. London, UK: Hodder Arnold, 2006, pp. 36e41. 11. De Lima L. Opioid availability in Latin America as a global problem: A new strategy with regional and national effects. Innovations in End-of-Life Care 2003;5(1). http://www2.edc.org.lastacts/ archives/archivesJan03/default.asp. Accessed March 22, 2007. 12. De Lima L, Sweeney C, Palmer L, Bruera E. Potent analgesics are more expensive for patients in developing countries: a comparative study. Poster presentation. In: Abstracts of the 10th World Congress on Pain, August 17e22, 2002, San Diego, California, USA. Seattle, WA: IASP Press, 2002. 13. Wenk R, Bertolino M, DeLima L. Analge´sicos opioides en Latinoame´rica: la barrera de accesibilidad supera la de disponibilidad (Opioid analgesics in Latin America: the access barrier surpasses that of availability). Med Pal 2004;11:148e151. 14. Joranson DE. Improving availability of opioid pain medications: testing the principle of balance
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in Latin America. Innovations in End-of-Life Care 2003;5(1). http://www2.edc.org.lastacts/archives/ archivesJan03/default.asp. Accessed March 22, 2007. 15. Wenk R. Palliative home care. In: Bruera E, Higginson I, Ripamonti C, Von Gunten C, eds. Textbook of palliative medicine. Oxford: Oxford University Press, 2006. 16. Latimer EJ. The ethics of partial palliative care. J Palliat Care 1994;10(3):107e110. 17. Wenk R, Monti C, Bertolino M. Asistencia a distancia: mejor o peor que nada? (Distance care: better or worse than nothing?) Med Pal 2003;10: 136e141. 18. Wenk R. Modelos de instituciones de Cuidado Paliativo. III Congreso de la Asociacio´n Latinoamericana de Cuidados Paliativos (Palliative care associations in Latin America. Oral presentation. In: Abstracts of the III Congreso dela Asociacio´n Latinoamericana de cuidados Paliativos). Isla Margarita, Venezuela, 2006. 19. Wenk R, DeLima L. Palliative care education in Latin America. Results of an on-line survey. Submitted for publication. 20. Wenk R, DeLima L, Eisenchlas J. Palliative care research in Latin America. Results of a survey in the region. Submitted for publication. 21. Bruera E. Investigacion en Cuidado Paliativo. Segundo Curso de Cuidado Paliativo. Pontificia Universidad Catolica de Chile, Santiago, Septiembre 2006. 22. Suffering at the end of life. State of the world. http://worldday.org/documents/state_of_the_world. pdf. Accessed March 22, 2007. 23. Pan American Health Organization, World Health Organization. Regional declaration on the new orientations for primary health care. http:// www.paho.org/English/Gov/CD/cd46-13-e.pdf. Accessed March 22, 2007.
Journal of Pain and Symptom Management
645
Special Article
Palliative Care Development in South America: A Focus on Argentina Roberto Wenk, MD, and Mariela Bertolino, MD Argentine Program for Palliative Medicine (R.W., M.B.), Foundation of the Medical Federation of the Province of Buenos Aires (FEMEBA); Palliative Care Unit Hospital Sommer and Palliative Care Unit (R.W., M.B.), Hospital Tornu, Argentinean Association for Medicine and Palliative Care (M.B., R.W.); and Latin American Association for Palliative Care (R.W., M.B.), Buenos Aires, Argentina
Abstract Many Latin American and Caribbean national health systems mainly focus on disease prevention, prenatal assistance, undernourishment, etc. They still do not have the conditions for developing palliative care (PC). In general, quality of life during the dying process is poor, with fragmented assistance, uncontrolled suffering, poor communication between professionals, patients, and families, and a great burden on family caregivers. The development of PC in the region started around 1981, but it is still not available to an acceptable number of patients. J Pain Symptom Manage 2007;33:645e650. Ó 2007 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved. Key Words Palliative care, South America, measures of resources, processes, results and outcomes
Accepted for publication: February 1, 2007.
patients, and families, and a great burden on family caregivers.2 Palliative care (PC) in LA has been successful in terms of the number of PC teams and programs and opioid consumption.3 Yet, it has not been successful in coverage of the target population: PC is still not available to an acceptable percentage of terminally ill patients in LA. PC teams and programs, working inside and outside the health systems, have had different rates of success in justifying the need for palliative care. Their success may link to their ability to make the necessary changes in the culture of their institutions and countries.4 According to the changes, national health systems can be grouped into those that 1) are still not aware of the need for PC, 2) recognize the need but are concerned about the solutions, 3) accept PC as a health priority but do nothing important to promote its implementation, and 4) do everything possible to facilitate PC implementation.
Ó 2007 U.S. Cancer Pain Relief Committee Published by Elsevier Inc. All rights reserved.
0885-3924/07/$esee front matter doi:10.1016/j.jpainsymman.2007.02.002
Introduction Latin America and the Caribbean (LA) is a developing region comprising 35 different countries, with a population of 551 million. It is challenged by common economic, political, and cultural factors. Many national health systems must deal with inadequate infrastructures, poor administrative systems, poverty, limited educational opportunities, etc.1 Most of these countries fail to provide appropriate care for dying patients. In general, quality of life during the dying process is poor, with fragmented assistance, uncontrolled suffering, poor communication between professionals,
Address reprint requests to: Roberto Wenk, MD, Belgrano 585, 2900 San Nicola´s, Argentina. E-mail: [email protected]
646
Wenk and Bertolino
Even as PC has scaled up in the last 20 years, groups 1, 2, and 3 are predominant. Currently, there is a consensus in the region that there is an increasing need for PC as an essential component of health care services. The reasons are the following: 1. The prevalence of chronic diseases is increasing: cardiovascular disease, cancer, chronic respiratory diseases, and diabetes are the leading causes of mortality and disability.5 2. The population is aging: older persons represent 8% of the total population, and in 2025, this figure will rise to 14%.6 3. Late disease diagnosis and the lack of curative facilities in resource-poor areas prompt PC as an essential component of patient care.
PC Status We describe PC status in LA, evaluating potential measures of resources, processes, results, and outcomes.7 The description highlights unmet needs and how they are mostly met in Argentina. We acknowledge that the information could be incomplete because of the scarce regional data. We include some data from Argentina that may be similar to those of other countries.
Structure Support of the Health Authorities. In most LA countries, support of health authorities is insufficient. Their governments are unable and/or reluctant to fulfill the demand for PC. Data from a survey on 566 LA professionals8 indicate that 70% of them do not consider PC a priority in their country’s health policies. Data provided by 17 PC leaders in different LA countries9 indicate that, in 80% of the countries, PC is not yet recognized as a discipline and is not included systematically in the free public or private health system. There are reported national PC programs in seven countries.8 Three countries (Chile, Costa Rica, and Cuba) are active and support PC nationwide. Several facts may account for their effectiveness: 1) they are supported by a health policy, 2) they developed with
Vol. 33 No. 5 May 2007
established plans based on needs assessments, and 3) they interact with a primary care system that refers patients and collaborates on their care. In an increasing number of countries, effective advocacy has motivated health authorities to recognize the needs of terminally ill patients and to focus on PC development. In Argentina, there is not yet a national health policy to implement PC. There are different regulations that promote and guarantee PC and opioid availability, but they are ignored. Three provinces (Rı´o Negro, Mendoza, and Chaco) have laws and two (Neuque´n and Tierra del Fuego) have government bills to promote PC. Economy. Governments are underfunded to finance health system infrastructure, assistance centers, infectious disease control, prenatal assistance, malnutrition, etc. But these same health systems continue to pay for lifeprolonging, and sometimes futile, interventions,10 rather than providing quality PC. The lack of research data on the costs associated with PC as compared with other health care costs also contributes to this situation. In most countries in LA, PC is still not recognized as a medical specialty, and PC teams and programs are difficult to finance because the health systems do not pay, or underpay, for the PC services. This makes sustainability an enormously difficult issue that most solve with mixed approaches: resources from charity, work forfree on a volunteer basis, and care paid by the patient (when it is possible) or by the health insurance (some accept PC and pay for it). Opioid Availability and Accessibility. LA consumes less than 1% of the global consumption of morphine.11 Reasons for the underuse are lack of physician and pharmacist training in opioid analgesia (and other specific medications), overly restrictive laws and regulations for opioid prescription and storage, and the high cost of opioids. There are outdated and nonscientific prescribing regulations that restrict the use of opioid analgesics: 50% of 566 professionals surveyed consider these regulations as barriers to opioid use.8 Different opioids are available, but the high prices of most of them, when related to the mean monthly regional incomes,
Vol. 33 No. 5 May 2007
Palliative Care in South America
limit their actual accessibility and utilization.12,13 Some countries have increased their use of opioids, but most are below the global mean of 6.2 mg per capita.14 This increase is the result of changes in the policies that restricted their use, but it is also the result of the work of PC teams that guarantee the provision of opioids without charge or at low cost with compound and generic preparations.15 In Argentina, the availability of commercial and compounded ‘‘weak’’ (codeine, propoxyphene, and tramadol) and ‘‘strong’’ opioids (morphine, methadone, oxycodone, and fentanyl) is good. Although morphine and codeine are supposed to be supplied for free to all patients, there are access difficulties. Provision is variable to inpatients and limited to outpatients in public hospitals. Distribution is variable in distant cities and regions. PC Teams and Programs. There are unknown numbers of PC teams and programs in the region, and there is no information on how many are successful in their development or their service delivery. They vary among countries, cities, and also each other. They operate differently, depending upon their development. They are located in the community or in hospitals, and operate in different settings with unique experiences. They treat a majority of cancer patients. In general, most PC programs provide partial care:16 teams consisting of one or two disciplines with part-time staff, with mixed or exclusive home or outpatient care, distance care,17 and institutional activity, but no specific facilities (mobile teams without their own beds). Full PC programs with interdisciplinary teams providing 24/7 care in a consulting room, at home, in daycare, and in the hospital (with their own beds) are not the rule. The situation in Argentina is as follows: The total number of PC teams is about 75. The majority are in large cities, most in Buenos Aires, Rosario, and Cordoba. Some were created more than 20 years ago, but many in the last five years. Some are supported by nongovernmental organizations. In the public health system, most are established in hospitals that deliver inpatient care. In the social security
647
system, most are freestanding services that deliver home care. Many teams are functional: a trained professional works with professionals of other disciplines according to the patient’s needs. There are more positions available in PC, but most PC professionals earn fees with positions in other disciplines. Only a few PC teams have their own inpatient facilities. There are 38 PC beds in entire the countryd18 in Palliative Care Units Hospital Sommer - FEMEBA and Hospital Tornu - FEMEBA, the Palliative Care Unit for Adults Rosario (UCPAR ) and 20 in hospices. Home care has had limited development. In Buenos Aires city, with 33 hospitals, the public system does not deliver home care. In Rosario, Rı´o Negro, and Neuque´n, the public health system does deliver home care. Daycare facilities have had minimal development (available at Pallium and Palliative Care Units Hospital Sommer - FEMEBA and Hospital Tornu - FEMEBA). There are two hospices with inpatient facilities (‘‘San Camilo’’ in Vicente Lopez, Buenos Aires, and ‘‘Casa de la Bondad’’ in Cordoba City) and one that provides home care (‘‘Madre Teresa’’ in Luja´n, Buenos Aires). There are no specific facilities for PC patients who need long-term hospitalization. Geriatric facilities do not care for PC patients, except for those with dementia. Patients with uncontrolled symptoms are admitted to acute care facilities, and in most cases, they cannot be discharged if they lack adequate family or social support.
National PC Associations. National associations are important to promote national standards in PC education and practice, and to protect the interests of their members. A survey conducted in 20 LA countries in March 2006 indicates that only Argentina, Bolivia, Brazil, Colombia, Mexico, Paraguay, Peru, Uruguay, and Venezuela have national associations.18 Not all are active. Argentina’s was the first in the region (1991). The Argentinean Association for Medicine and Palliative Care (AAMyCP) is an interdisciplinary scientific
648
Wenk and Bertolino
association created in 1991 with approximately 300 members in 13 of the 23 provinces. It conducts scientific programs, has international academic cooperation (with France and Spain), and effects of diffusion to the community.
Process Education. Current education and training fail to provide health professionals with the attitudes, knowledge, and skills required to provide good care for the dying patient. The results of an online survey focused on the level, amount, and type of education in the region indicate that, although a majority (80%) of the respondents deliver PC to patients with different conditions, fewer than 15% received any specific education in their undergraduate training, and most have gained their knowledge through lectures and self-education programs after graduation. Only a few had the possibility to receive education that included both classroom and bedside teaching. Results also indicate that 91% of the respondents performed some kind of learning activity during the last five years.19 There is a continuous and growing trend among health care professionals to learn about end-of-life care issues. There are more opportunities to practice and improve teamwork and problem solving, i.e., courses with a large amount of clinical practice, fellowships in clinical units, residency programs, e-teaching, etc. We need to identify the best academic groups and teaching protocols to encourage their duplication. Most of the programs started teaching to share what they thought proved useful. Their activity pushed the development of PC in the region for more than 15 years, but it is now time to review, and perhaps revise, the education and training activities. The educational opportunities in Argentina include the following: There are multiple graduate education programs with different formats: classroom based, classroom-bedside based, workshops, advanced seminars, and e-teaching. Most are interdisciplinary. Some have collaboration from foreign universities (Oxford, UK and Calgary, Canada).
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There is little PC undergraduate education for physicians and nurses; nursing schools are more interested in PC. Opportunities for comprehensive education and training in PC are available in two cities: -- Buenos Aires: programs for physicians include a three-year, 40hours-per-week opportunity and an interdisciplinary residency (two years, 40 hours per week). -- Rosario: residency for physicians. Certification in PC by the AAMyCP and the National Academy of Medicine started in 2005. The College of Physicians of the Province of Santa Fe recognized PC as a discipline in 2006. Shortly, residency requirement and licensure examinations will be required in the country. This is a positive precedent for the region.
Research. There is a small amount of unshared research activity with heterogeneous quality. The results of an online survey to obtain information on PC research in LA countries20 showed that there is very limited research activity in the region. The reasons are limited resources, minimal expertise in research, and scarce availability of trained researchers and training opportunities. Although, almost always, clinical practice is viewed as urgent, research is just important.21 Clearly, there is an enormous need to facilitate PC research activity. The Latin American Association for Palliative Care (ALCP) task force will assist by 1) formulating a research agenda according to regional needs, 2) developing protocols for multicenter studies, and 3) supporting those who conduct research. Assistance Activity. Due to the lack of data collection and analysis, there is limited regional or individual country information about the number of patients who receive PC; how and where they die; practices; and clinical, organizational, and economic issues related to the caring process. We need to identify the best way to deliver PC in the region and which models can be duplicated.
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Palliative Care in South America
Output PC Availability, Accessibility, and Affordability. It is estimated that 5%e10% of LA patients who need PC receive it. Ninety-seven percent of PC provision is available in large cities and 3% in small cities/rural areas. More than 50% of patients cannot pay for the services or medications they receive.8 These figures highlight inadequate availability, accessibility, and affordability. In most cases, though not in all, these factors are responsible for the small percentage of patients who receive PC. In Argentina, the Hospital Sommer covers an area with 710,000 inhabitants. Its free PC service is active 24/7, delivers integrated care in the office, at home, or in hospital in its PC unit, and provides all the medication. According to its target population, the service should care for 2,200 cancer patients per year (three cancer patients 1,000 inhabitants year), but the service only cares for 300 new patients per year (11% of the patients who need PC). Making services and medications available is important but may be not enough.22 It is important to include PC in national health care policies, to graft it onto existing services, and to integrate it within mainstream medicine. But this may also not be enough. Only systems with coordinated cooperation and interaction between primary health care services and PC teams will increase the coverage of the target population.23 Primary care professionals with basic training in PC will 1) identify target patients, 2) facilitate their entry into the health system, 3) treat those with uncomplicated symptoms, and 4) continue long-term contact. PC teams, which generally reach only a minority of patients, will 1) teach primary care physicians and nurses, 2) collaborate and communicate on the care of patients, and 3) treat patients whose complex pain and suffering is beyond the expertise of the primary care professional.
Outcome It is impossible to describe the changes in end-of-life care that are due to PC provision. Its value is anticipated rather than demonstrated. It is assumed, rather than known, what patients and families receive at the end of life. Evidence about how PC reduces the
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patients’ suffering is lacking. Outcomes measurement is a pending task. The ALCP is developing a regional database aimed at obtaining information about the regional PC providers, patients, services, and outcomes. Simple outcome measures relevant to LA will allow us to learn how effective PC is and how its effectiveness relates to its providers, epidemiological issues, practices, and organizational and economic factors.
Comment There is in the region an increasing need for PC, and many professional and nonprofessional people are working toward this end. However, the fact that most health systems do not conceptualize PC as an important element of health care may jeopardize their work. Moreover, the lack of knowledge about endof-life care in the region worsens this situation. The ALCP must help PC providers to both acquire information on the quality of end-oflife care and advocate with the health authorities to consider end-of-life care a public health problem.
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