Abstract

Legal framework and denial of death and suffering

In 2022, an important international report was published on the “value of death” not only in the field of health, but in relation to human societies in general ¹1. Sallnow L, Smith R, Ahmedzai SH, Bhadelia A, Chamberlain C, Cong Y, et al. Report of the Lancet Commission on the Value of Death: bringing death back into life. Lancet 2022; 399:837-84.. This report proposed to reimagine systems related to end of life in which death is understood not only as a physiological event but also as a relational and spiritual phenomenon with a value of its own and inseparable from life. In their analysis of the COVID-19 pandemic, these authors criticized the low priority given by most governments worldwide to the issue of alleviating suffering and supporting bereavement, evidenced by the low investment in palliative care. At the same time, we are witnessing in Brazil changes that threaten the feasibility of palliative care policies in primary health care.

The fundamentals of primary health care have been established since the Declaration of Alma-Ata²2. World Health Organization. Declaration of Alma-Ata. https://cdn.who.int/media/docs/default-source/documents/almaata-declaration-en.pdf?sfvrsn=7b3c2167_2 (acessado em 16/Jun/2022).
https://cdn.who.int/media/docs/default-s... , with a focus on healing and rehabilitation and omission in relation to palliative care. In Brazil, the omission persists in the official documents that support the functioning of its society and the Brazilian Unified National Health System (SUS), namely the Federal Constitution of 1988 ³3. Brasil. Constituição da República Federativa do Brasil de 1988. http://www.planalto.gov.br/ccivil_03/constituicao/constituicao.htm (acessado em 04/Mai/2022).
http://www.planalto.gov.br/ccivil_03/con... and Laws n. 8,080/90⁴4. Brasil. Lei nº 8.080, de 19 de setembro de 1990. Dispõe sobre as condições para a promoção, proteção e recuperação da saúde, a organização e o funcionamento dos serviços correspondentes e dá outras providências. Diário Oficial da União 1990; 20 set. and n. 8,142/1990⁵5. Brasil. Lei nº 8.142, de 28 de dezembro de 1990. Dispõe sobre a participação da comunidade na gestão do Sistema Único de Saúde (SUS) e sobre as transferências intergovernamentais de recursos financeiros na área da saúde e dá outras providências. Diário Oficial da União 1990; 31 dez.. These gaps in Brazilian legislation can be understood as a behavior of denial of death and suffering, since they focus on actions related to health promotion, prevention, diagnosis, treatment and rehabilitation, not to mention care with finitude.

Palliative care and world indicators

The denial of finitude within the scope of health systems is reflected in some global indicators. The first of these is the quality of death ranking published by The Economist⁶6. The Economist. The 2015 Quality of Death Index. Ranking palliative care across the world: a report by The Economist Intelligence Unit. http://www.lienfoundation.org/sites/default/files/2015%20Quality%20of%20Death%20Report.pdf (acessado em 13/Fev/2017).
http://www.lienfoundation.org/sites/defa... . In the last edition of this index, published in 2015, 80 countries were surveyed in relation to 20 quantitative and qualitative indicators comprising five distinct categories, namely: (1) Palliative and healthcare environment, (2) Human resources, (3) Affordability of care, (4) Quality of care, and (5) Community engagement. In this survey, Brazil ranked 42nd, behind countries with more fragile economies such as Uganda, Ecuador and Malaysia.

In turn, in a recent survey on the quality of end-of-life care in the world ⁷7. Finkelstein EA, Bhadelia A, Goh C, Baid D, Singh R, Bhatnagar S, et al. Cross country comparison of expert assessments of the quality of death and dying 2021. J Pain Symptom Manage 2022; 63:e419-29., 181 key informants from 81 countries representing more than 80% of the world’s population were interviewed. In this survey, Brazil ranked 79th as one of the worst places to die in the world.

The worldwide mapping of palliative care development was designed by the World Hospice and Palliative Care Alliance in partnership with several universities and palliative care societies ⁸8. Clark D, Baur N, Clelland D, Garralda E, López-Fidalgo J, Connor S, et al. Mapping levels of palliative care development in 198 countries: the situation in 2017. J Pain Symptom Manage 2020; 59:794-807.. In its latest review, Brazil was classified at level 3b on a six-point scale (1, 2, 3a, 3b, 4a and 4b) where lower levels indicate worse palliative care provisions. According to the methodology adopted in this work, countries at level 3b share the following characteristics: palliative care activism in several locations, multiple sources of funding, availability of morphine, palliative care services by a variety of providers, provision of training and education by palliative care organizations. However, Brazil persists with level 3a characteristics, which are limited availability of morphine, small number of palliative care services compared to population size, and lack of knowledge about palliative care of part of the population, professionals and politicians ⁹9. Lynch T, Connor S, Clark D. Mapping levels of palliative care development: a global update. J Pain Symptom Manage 2013; 45:1094-106..

Another global indicator is the level of opioid consumption measured by the International Narcotic Control Board, the body of the World Health Organization (WHO) in charge of monitoring the consumption of narcotic drugs ¹⁰10. International Narcotics Control Board. Availability of internationally controlled drugs: ensuring adequate access for medical and scientific purposes: indispensable, adequately available and not unduly restricted. https://www.incb.org/documents/publications/annualreports/ar2015/english/supplement-ar15_availability_english.pdf (acessado em 13/Fev/2015).
https://www.incb.org/documents/publicati... . The unit used is the Defined Daily Dose for statistical purposes (S-DDD), expressed by million inhabitants per day. Latin American countries consume hundreds of S-DDDs while developed countries consume thousands of S-DDDs. Within Latin America, Brazil consumes less opioids than Argentina and Chile. In summary, in Brazil quality of death is poor, there is low access to potent opioids and palliative care supply is less than desirable.

Available data on the number of palliative care services in Brazil support this assessment. Despite the increase in the number of palliative care services in the country in the last decade, the ratio of services to population size is still quite low. In 2012, there were 92 services including the hospital, home and hospice areas ¹¹11. Pastrana T, De Lima L, Wenk R, Eisenchlas J, Monti C, Rocafort J, et al. Atlas de cuidados paliativos en Latinoamérica. Houston: IAHPC Press; 2012.. There were 177 services in 2018, 191 in 2019 ¹²12. Dos Santos AF, Ferreira EA, Guirro ÚD. Atlas dos cuidados paliativos no Brasil 2019. São Paulo: Academia Nacional de Cuidados Paliativos; 2020. and 198 in 2020 ¹³13. Pastrana T, De Lima L, Sánchez-Cárdenas M, Van Steijn D, Garralda E, Pons JJ, et al. Atlas de cuidados paliativos de Latinoamérica 2020. 2ª Ed. Houston: IAHPC Press; 2021., a ratio of 0.94 services/million inhabitants, below Argentina and Chile (Table 1).

WHO estimates that about 40 million people die annually in need of palliative care. About 78% of them are in low- or middle-income countries and only 14% have adequate access to this kind of care ¹⁴14. World Health Organization. Palliative care. https://www.who.int/news-room/fact-sheets/detail/palliative-care (acessado em 16/Jun/2022).
https://www.who.int/news-room/fact-sheet... . In Brazil, it is estimated that over 885,000 people died in need of palliative care in 2019 ¹⁵15. Ministério da Saúde. Sistemas de Informação sobre Mortalidade - SIM (1979-2019). https://dados.gov.br/dataset/sistema-de-informacao-sobre-mortalidade-sim-1979-a-2018 (acessado em 18/Mai/2022).
https://dados.gov.br/dataset/sistema-de-... , a huge number of patients experiencing unrelieved suffering at death. This is about hidden suffering.

An event that occurred in September 2021 during the Parliamentary Commission of Inquiry on the pandemic in the Brazilian Senate caught our attention and can serve as a qualitative indicator of misinformation about palliative care in the country. In a speech, an eminent senator referred to palliative care as a “macabre specialty” and “promoter of euthanasia”, showing a lack of understanding of the proposal of this type of care. This attitude did not surprise us, since in 2014 the literature already considered the poor knowledge of the Brazilian political class about palliative care to be one of the barriers to the development of this field in Brazil ⁹9. Lynch T, Connor S, Clark D. Mapping levels of palliative care development: a global update. J Pain Symptom Manage 2013; 45:1094-106..

Contradictions

An important international report on palliative care and pain relief published in 2018 pointed to one of the fundamental contradictions of medical treatments in the modern world, where, on the one hand, some patients are overtreated, receiving unnecessary procedures, while others do have no access to opioids to relieve their pain. In the epigraph of this report is the harrowing story of a patient in India who was suffering from pain from lung cancer. At first, the patient experienced significant relief from this symptom with the use of morphine, but when his stock at the local health service ran out, he threatened to hang himself if the supply was not restored ¹⁶16. Knaul FM, Farmer PE, Krakauer EL, De Lima L, Bhadelia A, Kwete XJ, et al. Alleviating the access abyss in palliative care and pain relief: an imperative of universal health coverage: the Lancet Commission report. Lancet 2018; 391:1391-454.. Unfortunately, a similar situation would not be surprising in Brazil.

Ongoing progress

In 2014, the World Health Assembly published Resolution 67.19¹⁷17. World Health Organization. Integrating palliative care and symptom relief into primary health care: a WHO guide for planners, implementers and managers. https://apps.who.int/iris/bitstream/handle/10665/274559/9789241514477-eng.pdf (acessado em 04/Mai/2022).
https://apps.who.int/iris/bitstream/hand... , highlighting the preoccupation with non-communicable diseases and conditions, urging member countries to implement palliative care in their health systems, especially in primary health care and home care. The subject starts being addressed by public health policies in Brazil from the publication of ministerial decree 483, dated April 1, 2014, which redefines the care network for people with chronic diseases, including palliative care as a resource to be made available ¹⁸18. Ministério da Saúde. Portaria nº 483, de 1º de abril de 2014. Redefine a Rede de Atenção à Saúde das Pessoas com Doenças Crônicas no âmbito do Sistema Único de Saúde (SUS) e estabelece diretrizes para a organização das suas linhas de cuidado. Diário Oficial da União 2014; 2 abr..

The subject gains visibility when the Brazilain National Council of State Health Departments (CONASS) takes the discussion to the Tripartite Intermanager Commission (CIT) and approves Resolution n. 41/2018¹⁹19. Ministério da Saúde. Resolução nº 41, de 31 de outubro de 2018. Dispõe sobre as diretrizes para a organização dos cuidados paliativos, à luz dos cuidados continuados integrados, no âmbito Sistema Único de Saúde (SUS). Diário Oficial da União 2018; 23 nov., establishing the guidelines for a national palliative care policy, indicating the recognition of the importance of palliative care by the executive branch at the three levels of government.

Likewise, the legislative branches of some states start to focus on the debate on the inclusion of palliative care in their health policies with initiatives in Goiás in 2017 ²⁰20. Governo do Estado de Goiás. Lei Estadual nº 19.723, de 10 de julho de 2017. Institui a Política Estadual de Cuidados Paliativos e altera a Lei nº 16.140, de 02 de outubro de 2007, que dispõe sobre o Sistema Único de Saúde - SUS, as condições para a promoção, proteção e recuperação da saúde, a organização, regulamentação, fiscalização e o controle dos serviços correspondentes e dá outras providências. Diário Oficial do Estado de Goiás 2017; 12 jul., Rio Grande do Sul ²¹21. Estado do Rio Grande do Sul. Lei nº 15.274, de 31 de janeiro de 2019. Dispõe sobre aquisição, mediante dação em pagamento de precatórios alimentares vencidos, de bens móveis e imóveis, nos termos do art. 100, § 11, da Constituição Federal. Diário Oficial do Estado 2019; 31 jan., Rio de Janeiro ²²22. Governo do Estado do Rio de Janeiro. Lei nº 8.425, de 1º de julho de 2019. Cria o Programa Estadual de Cuidados Paliativos no âmbito da saúde pública do Estado do Rio de Janeiro. Diário Oficial do Estado do Rio de Janeiro 2019; 7 jul. and Paraná ²³23. Assembleia Legislativa do Estado do Paraná. Lei nº 20.091, de 19 de dezembro de 2019. Dispõe sobre a instituição dos preceitos e fundamentos dos Cuidados Paliativos no Paraná. Diário Oficial 2019; 19 dez. in 2019, São Paulo in 2020 ²⁴24. Assembleia Legislativa do Estado de São Paulo. Lei nº 17.292, de 13 de outubro de 2020. Institui a Política Estadual de Cuidados Paliativos e dá outras providências. Diário Oficial do Estado de São Paulo 2020; 14 out. and Minas Gerais in 2021 ²⁵25. Assembleia Legislativa do Estado de Minas Gerais. Lei nº 23.938, de 23 de setembro de 2021. Estabelece princípios, diretrizes e objetivos para as ações do Estado voltadas para os cuidados paliativos no âmbito da saúde pública. Minas Gerais - Diário do Executivo 2021; 24 set. (Table 2). Additionally, there are already examples of situations in which the legislature of some municipalities developed initiatives in this direction, such as the municipal bills still in discussion in Londrina (Paraná) and Ribeirão Preto (São Paulo) and in development in Curitiba (Paraná) at the time of writing.

Changes in primary health care

Unfortunately, changes in primary health care in recent years have directly threatened primary health care and palliative care in this context.

primary health care, the population’s first point of contact with the health system, also makes it possible for people to move between different levels of care. In Brazil, primary health care was structured based on Comprehensive Health Actions, developed at the 8th National Health Conference and consolidated with the implementation of the Family Health Strategy (ESF) in the 1990s ²⁶26. Giovanella L, Franco CM, Almeida PF. Política Nacional de Atenção Básica: para onde vamos? Ciênc Saúde Colet 2020; 25:1475-82..

Subsequently, another advance in primary health care was the inclusion of the Family Health Support Centers (NASF), enabling the existence of multidisciplinary teams to support professionals on the front line of primary health care ²⁷27. Ministério da Saúde. Portaria nº 154, de 24 de janeiro de 2008. Cria os Núcleos de Apoio à Saúde da Família - NASF. Diário Oficial da União 2008; 4 mar.. As of 2017, palliative care is explicitly stated in the new Brazilian National Primary Healthcare Policy ²⁸28. Ministério da Saúde. Portaria nº 2.436, de 21 de setembro de 2017. Aprova a Política Nacional de Atenção Básica, estabelecendo a revisão de diretrizes para a organização da Atenção Básica, no âmbito do Sistema Único de Saúde (SUS). Diário Oficial da União 2017; 22 set., maintaining NASF with extended primary health care teams.

However, the reformulation of the Brazilian National Primary Healthcare Policy through subsequent ordinances has threatened the feasibility of implementing palliative care policies in primary health care. Projected funding for NASF teams has been abolished ²⁹29. Ministério da Saúde. Portaria nº 2.979, de 12 de novembro de 2019. Institui o Programa Previne Brasil, que estabelece novo modelo de financiamento de custeio da Atenção Primária à Saúde no âmbito do Sistema Único de Saúde, por meio da alteração da Portaria de Consolidação nº 6/GM/MS, de 28 de setembro de 2017. Diário Oficial da União 2019; 13 nov., followed by the lack of incentive for the incorporation of palliative care, given the absence of specific performance indicators ³⁰30. Ministério da Saúde. Portaria GM/MS nº 102, de 20 de janeiro de 2022. Altera a Portaria GM/MS nº 3.222, de 10 de dezembro de 2019, que dispõe sobre os indicadores do pagamento por desempenho, no âmbito do Programa Previne Brasil. Diário Oficial da União 2022; 21 jan.. In addition, the current per capita funding criterion contributes to reducing the amount of funds, which are now limited to the population registered with the system rather than the total local population estimated by the Brazilian Institute of Geography and Statistics, which is a more severe problem in an already underfunded system. Thus, universal access to primary health care has been threatened and, consequently, the dream of seeing palliative care being implemented in this context.

Therefore, at first (2008-2016), a pathway seemed possible to include the practice of palliative care in primary health care. With the ongoing changes in the technical and budgetary structures, the principles of universality, integrality and equity are threatened, making more remote the possibility of concrete improvement in mitigating end of life suffering for a large portion of the Brazilian population.

Despite all the efforts that have been made so far to develop palliative care in Brazil, much remains to be done. The emergence of important legal frameworks does not guarantee the existence or execution of a consolidated public policy in this area.

Implementation of palliative care as public policy

These arguments reinforce the role to be played by society in defending its rights and require a more detailed analysis of the current moment and the stages that need to be overcome so that palliative care may be effectively established as solid public policy in Brazil.

It is important to recognize that public policies also have their life cycle, didactically divided into five stages ³¹31. Howlett M, Ramesh M, Perl A. Studying public policy: policy cycles and policy subsystems. Oxford: Oxford Uiversity Press; 2009.: agenda setting; policy formulation; decision making; policy implementation; and policy evaluation. Each of these stages has its complexity, rhythm, timing and needs. The approval of laws happens in stage 2 and should go beyond providing guidelines on the issue, advancing in the technical and operational details of the topics involved in the implementation. In addition, the factors that interfere in this process must be understood, namely the political and economic context and the role of the various actors involved, especially the beneficiaries of the aforementioned policy, but also the political and social actors.

Conclusion

There is a systemic cultural of denial of death and the dying process, alongside a huge amount of avoidable global suffering related to end of life, which also affects Brazil. Palliative care, an approach acknowledged worldwide, is the first line of answer to these problems. In Brazil, palliative care is beginning to be recognized not only by healthcare professionals, but also by some state legislators and state executive branches. However, much still needs to be done to implement a consolidated palliative care policy in Brazil.

References

Publication Dates

History