Needs for Palliative Care of Cancer Patients in Brazil: Analysis of Data from 2008-2014

Cledy Eliana dos Santos1*, José Manuel Peixoto Caldas2, José Américo Serafim3, Newton Barros4, Altamiro da Costa Pereira5, Marcelo Eduardo Zanella Capra6 and Airton Stein7 1Community Health Service and Palliative Care Service, Hospital Nossa Senhora da Conceição GHC (Grupo Hospitalar Conceição), Brazil 2Department of Education and Medical Simulation, University of Porto-Portugal; Visiting Professor of Post-Graduate Program in Collective Health from UNIFOR, Brazil 3Information Technology Department of the Brazilian Health System-SUS (DATASUS), Ministry of Health, Brazil 4Palliative Care Service, Hospital Nossa Senhora da Conceição-GHC (Grupo Hospitalar Conceição) 5Director of the CINTESIS FMUP, Brazil 6Oncology Service, Hospital Nossa Senhora da Conceição-GHC (Grupo Hospitalar Conceição), Brazil 7Community Health Service and Teaching and Research Management, Hospital Nossa Senhora da Conceição-GHC (Grupo Hospitalar Conceição), Brazil


Introduction
Systematic analysis on the subject shows that the disease prevention and curative treatments have been the main goals of the health professionals, being the incurability processes and often reputed death considered as failure. When the character of the cure has to be immediate, the implementation of actions directed to the comprehensive care of people with advanced chronic diseases or in the final stages of life, as well as the necessary help to maintain or achieve a life with dignity and quality, has been a challenge. Besides, when the model of curative medicine is focused essentially on the disease, this model does not meet all the needs of people living with chronic advanced diseases or people who do not respond to curative treatment. According to the World Health Organization (WHO), each year more and the Caribbean, and call attention to the fact that palliative care has not been valued in people with cancer, when they should be part of the treatment from the time of diagnosis [3].
However, the World Health Organization (WHO) demonstrates that approximately 80% of cancer patients need terminal palliative care and at least 80% of persons who died as a result of cancer and other life-threatening diseases could benefit from palliative care [4,5]. To the year 2030, 27 million new cases of cancer, 17 million deaths (caused by cancer) and 75 million people living with the disease are expected worldwide. The biggest effect of this increase will focus on low-and middle-income countries [6]. Brazil currently has a population of approximately 206 million people, with a large regional diversity and a variety of ethnicities -47.7% of whites, 43.1% of mulattos (mixture of whites and blacks), 7.6% of blacks, 1.1% of Asians and 0.4% of indigenous -distributed in a wide territory [7].
The demographic and epidemiologic transition in the country has been deeply marked by low fertility rates, fast ageing and increasing life expectancy resulting in rise of chronic non-communicable diseases. This process of demographic transition, called "ageing population", associated with the transformation in the relationship between people and their environment, brought a major change in the profile of morbidity and mortality, decreasing the occurrence of infectious diseases and laying the chronic non-communicable diseases as the new center of attention in the problems of disease and death of the Brazilian population. Nevertheless, the setting of cancer trends rates and burden, associated with longer chronic disease trajectories and greater co-morbidity, is producing a major impact on public health policy, requiring further incentives to improve and expand palliative care provision. The distribution of different types of cancer in Brazil suggests an epidemiological transition in progress [8][9][10][11].
With recent fast ageing population, which designs the exponential growth of the elderly, it is possible to identify a significant increase in the prevalence of cancer, requiring immense effort for the provision of adequate attention to patients. In this context, the Brazilian Health System faces major challenges to ensure the constitutional right of universal access to health care assistance and technological advances to the intire population. Concerns with the ageing population, the increasing incidence of cancer and the emergence of chronic noncommunicable diseases include palliative care as one of the objectives of the Brazilian Health System [12,13].
Cancer is a disease that can appear silently, being so often diagnosed at an advanced stage hindering treatment success and decreasing the chances of cure [14]. The Brazilian National Policy for Cancer Prevention and Control ensures integral assistance to any person with cancer, by means of High Complexity Assistance Unit in Oncology (Unacon) and High Complexity Assistance Center in Oncology (Cacon) [15]. In Brazil, about 60% of cancer patients are diagnosed at an advanced stage. In the case of lung cancer, 87.9% of the cases are discovered late [16][17][18][19]. Therefore, it becomes imperative to improve the quality of care, to facilitate the access to palliative care and to promote equity in health services [20,21]. Considering that each disease and individual present a different pattern of disease progression and a variety of factors including age, co-morbidities and level of care, the estimation of necessary resources and the definition of specific criteria to structure and adapt palliative care have been a big challenge to the Brazilian health care system [22][23][24][25][26][27][28][29][30].
So far, we have used as reference the experiences of countries which have a well-structured assistance policy and established parameters for estimation of health care resources at different levels of attention.
However, it is important to analyze the applicability of these models in the reality of our country, as well as to sensitize health professionals for a full and humanized understanding regarding the complexity of attention that a patient with serious or advanced illness in the final stage of life, including their families, demands.
The main goals of this study were to analyse cancer patients who could benefit from palliative care in Brazil, through the outline of national death certificate and hospital admission of cancer patients in the Brazilian Health System (SUS) for treatment of clinical intercurrences related to cancer, and to estimate the target population with palliative care needs between 2008 and 2014. An ecological and historical series study was performed using national secondary data from mortality information system and hospital admissions related to cancer. In addition, the specific goals for this research are: to analyze the demand of patients for palliative care and to verify the use of hospital beds for admission of patients with oncologic clinic intercurrences.

Health policy
The 1988 Brazilian Federal Constitution recognized health as a citizen's right and a duty of the state, and established the basis for the creation of SUS, which was based on the principles of universality, integrity, and social participation [31]. Brazilian health-policy has been considering, for several decades, the universal access to health care, social reintegration, the need to enhance the hospital care for chronic patients suffering from multiple problems, convalescence and/or in need of permanent care requiring continuous assistance and physical and functional rehabilitation. The Brazilian Health System (SUS) is one of the largest public health systems in the world. Formed by a complex network of public and private institutions dedicated to providing, financing, and managing health services. Presently, three-quarters of the Brazil's 206 million inhabitants depend on free care from SUS [32,33]. In the last decades, several initiatives by the Brazilian Ministry of Health have incorporated palliative care as an important strategy for the health policy [34][35][36][37][38][39][40][41][42][43].
According to the Brazilian National Oncological Care (Decree GM/MS 2.439/2005), cancer control, like other chronic diseases, must contain all actions and health services available in the Brazilian Health System (SUS): health promotion, prevention, diagnosis, treatment, rehabilitation and palliative care [44]. With the goal of improving the quality of life, relieving physical suffering, catering for the psychological, spiritual and social needs of people with serious and advanced diseases and providing support to families and caregivers, it becomes necessary to promote reflection on the existing models of care, to meet the size, nature and severity of the needs of people with regard to palliative care and to motivate the inclusion or expansion of this type of care in the practice of comprehensive health care, following the principles of SUS: Universality, Equity and Completeness of health care [44]. communicable diseases (NCD). This sets up a change in the burden of diseases and presents a new challenge for managers of health. The stronger the impact of NCD in the quality of life of affected individuals, the greater the chance of premature death and the adverse economic effects for families, communities and society in general [45]. The four most prevalent chronic diseases highlighted by WHO [46] accounted for 52% of deaths in the years of 2008 and 2014 in Brazil. Concerning the average distribuition of diseases in both years, cardiovascular diseases account for most NCD deaths (54%), followed by cancer (31%), diabetes (9%) and respiratory diseases (6%) ( Table 1). Within the framework of chronic diseases, cancer deserves a differentiated approach, for its high prevalence, consumption of large amounts of financial resources, and its big institutional and social burden [47][48][49] (Figure 1).

Cancer in Brazil
Cancer figures among the leading causes of morbidity and mortality in Brazil, with approximately 576.000 new cases and around 202.000 cancer related deaths in 2014. According to the Brazilian National Oncology Policy, cancer control must include health promotion, rehabilitation, and palliative care, following the Brazilian Health System (SUS) principles: Universality, Equity and Completeness of health care. The incidence of cancer grows in Brazil, as all over the world, at a rate accompanying the ageing population, resulted from the increase of life expectancy. This is a direct result of the great global transformations of recent decades, which has changed the situation of people's health by the accelerated urbanization, new lifestyles and new patterns of consumption [47][48][49].
The total incidence of cancer in Brazil grew by 70% in the period from 2001 to 2014 and 11% in the period from 2008 to 2014. Estimates for 2014, valid also for 2015, point to the occurrence of approximately 576.580 new cases of cancer, including cases of non-melanoma skin cancer, reinforcing the magnitude of the problem of cancer in the country. In the same years, a total of 302,350 new cases of cancer for males and 274,230 for females are expected. The cancer type non-melanoma skin (182,130) will have the highest incidence in the Brazilian population, followed by prostate tumors (69.000), female breast (57,000), colon and rectum (33,000), lung (27,000), stomach (20,000) and cervix (15,000) [49,51].
By excluding the cases of non-melanoma skin cancer, there was an estimated total of 395 thousand (68.5%) new cases of malignant tumours [51], being the gender distribution 204,000 for males and 191,000 for females. In men, the most incident kinds of cancers are the prostate, lung, colon and rectum, stomach and oral cavity; and, in women, the breast, colon and rectum, cervix, lungs and thyroid gland [13].

Cancer mortality
Yearly an average of 1.

Clinical intercurrences in oncological patients
In recent years, in Brazil, we have seen an increased number of hospital admissions of patients presenting late diagnosis of cancer added to pre-existing comorbidities. These cases show the need for integral care to prevent or treat complications related to the cancer disease. They may be related to the tumor itself, systemic manifestations of the disease (often the first manifestation of the disease) or side effects of treatment, and may appear in acute or insidious ways, delaying diagnosis and treatment [53]. The term "clinical intercurrence of cancer" is related to a complication of the disease or its treatment, predictable or not, which requires hospitalization in specialized, general or day hospitals, for control of the complication [54]   included in the procedures of the Hospital Information System of the Brazilian Health System (SIH-SUS) [54]. Hospitalizations for treatment of clinical intercurrences in oncological patients can be conducted in any hospital, regardless of the authorization for high complexity in oncology. According to the retrospective analysis of hospital admissions data recorded in the Hospital Information System of SUS (SIH-SUS), approximately 90% of the hospital admissions made in the procedure "Treatment of Clinics Intercurrences of Cancer Patient" in Brazil were related to palliative care for terminally ill patients [55][56][57][58].

Estimating the needs of palliative care in Brazil
Even though palliative care is traditionally directed to people with cancer, in general it has been very difficult to define the exact number of people with indication of receiving this assistance mode in Brazil and the existing national data have not been processed to estimate the needs in this area. Up to now, the quantification of palliative care needs in our country has been estimated in isolation and based on international experiences. However there are doubts about the applicability of these parameters considering the population and territorial dimensions, as well as the regional diversities [59].
It becomes essential to know the size, nature and severity of the needs of people with regard to access to health services, as well as to identify the availability of resources to promote full assistance in hospice care in our country and, based on models and international studies that consider that, there is 1000 people in need of palliative care, per year, for every 1 million population. We can say that the Brazilian public health policy situation is very delicate, taking into account the size of the population (206 million) and the estimation of health services to meet the needs of 206,000 persons/year [26,[60][61][62][63]. By analyzing the population morbidity and mortality profile, it becomes necessary to establish feasible parameters to be deployed for assistance in palliative care such as national death register and hospital admissions data for treatment of cancer patients [56]. According to the retrospective analysis of hospital admissions of cancer patients, data recorded in the Hospital Information System of SUS (SIH-SUS), approximately 90% of the hospital admissions made in the procedure "Treatment of Clinics Intercurrences of Cancer Patient" in Brazil were related to palliative care for terminally ill patients [56].

Methodology Material and methods
This is a cross-sectional study using national death certificate and hospital morbidity and mortality data. The present research has a quantitative approach, with descriptive exploratory, retrospective and observational studies of cancer mortality and hospital admission of cancer patients. Mortality data (2008-2014) was obtained from the Mortality Information System (SIM) in database of DATASUS [57]. Created by the Ministry of Health in 1975, SIM is the oldest nationwide health information system. The National Mortality System is based on death statement information collected by the State Health Departments. The national database generated from this information is administered by the Health Surveillance Secretariat in cooperation with DATASUS. It contains information on the cause of death, as well as sex and age and place of death. The cause of death is coded using the ICD-10-WHO code, making international comparisons possible [64].

Hospital information system (SIH)
Hospital morbidity and mortality data related to cancer were obtained from the Hospital Information System of the Brazilian Health System (SIH-SUS). All hospital admissions for neoplasms occurred in the period (from 2008 to 2014) were included, and hospitalizations that do not fit with the pathology in question were excluded. The entire process of SIH-SUS is based on the Hospital Admission Authorizations (AIH), which includes patient and hospitalization data: description of hospital morbidity and mortality, the benchmarking of hospital assistance, epidemiological surveillance, as well as the validation of other health information systems [65][66][67]. The records of hospital admissions, hospital beds, hospitals that admitted patients in the procedure "Treatment of Clinical Intercurrences of Oncological Patient, " hospital mortality and overall mortality were obtained from the database of

Results
From 2008 to 2014, the Brazilian Health System recorded 78.4 million hospitalizations in public hospitals, including all causes and all age groups, and, of the total admissions registered in that period; 4.4 million admissions (5.6%) were of cancer patients. We also observed, in the same period (2008 to 2014), a variation of 4.4% in the total number of hospitalizations in SUS. There was an increase of 26.7% in hospitalizations related to cancer and 48.1% of hospital admissions for treatment of oncology clinic intercurrences, and, of the total number of hospital admissions (4,431,685) of cancer patients recorded between 2008 and 2014 in the Hospital Information System of SUS, 26.85% (1,189,908) were admitted for treatment of clinical intercurrence of cancer ( Table 3).
The hospital mortality of cancer patients, as seen in Table 4, was analyzed in frequency and rate. In the period from 2008 to 2014, considering the total number of cancer patients admitted to hospital, the mortality rate among the patients admitted for treatment of clinic intercurrence (21.22) was three times higher than for general cancer (7.77) ( Table 4 and Figure 3). In relation to the length of stay (LOS), the patients with cancer as a whole stayed an average of 5.7 days, and the patients admitted for treatment of clinic intercurrence, 7.9 days.

Hospital units with register of oncologic patient admitted for treatment of clinic intercurrence: analysis of data
Study conducted by the authors, through the National Register of Health Establishments-CNES, about hospital resources during the month of December 2014, showed that in Brazil, at that time, whereas the register is updated monthly, there was a total of 6,880 hospitals, being 5,244 (76.2%) general hospitals, 1096 (15.9%) hospitals and specialized hospitals and 540 (7.8%) day-hospitals. In relation to hospital beds, the study presents a total of 452,488 beds, being 319,283 (70.6%) of them beds that belong to SUS and 133,205 (29.4%) beds that do not belong to SUS, including all types of beds: general, specialized, ICU, long stay, day hospital, psychiatric, obstetric, pediatric etc.
Between 2008 and 2014, more than 1 million (1,089,011) hospitalizations for treatment of clinic intercurrence of cancer patients were registered in the Hospital Information System of SUS (SIH-SUS). These admissions were identified on 2,881 different health units around the country, and, of these units, those that had recorded at least 60 admissions per year (5 admissions per month) were identified, resulting in 342 hospitals. In conclusion, between 2008 and 2014, an average of 88% of all hospitalizations for treatment of clinic intercurrence of cancer patient were registered in 342 hospitals (Table 5).
In the period of 2008 to 2014, an average of 3,066 clinical hospital beds were used for treatment of clinic intercurrence of cancer patients, and, by analyzing the variation of utilization of hospital beds by region, we can say that, in total, there has been an increase of 43.9% of the beds used in the period of 2008 to 2014. The biggest variation occurred in the Northern region (142%), followed by the Southeast (47%) and the Northeast (44.1%), while the smallest variations were observed in the Midwest regions (12.2%) and in the South (29.9%) ( Table 6).

Size of cancer population in need of palliative care
This study was based on estimation models of WHO, Gomez-Batiste, Higginson and Brazilian Parameter of Ministry of Health (MOH) to identify the number of people who were possibly in need of oncologic palliative care. Data on the number and causes of deaths were derived from death registration and hospital admission data.
The following simulations assumed the estimation models of 1) WHO: at least 80% of terminal cancer patients will require palliative care; 2) Gomez-Batiste: 60% of deaths; and 3) Higginson: number of people with selected causes of death (cancer and non-cancer diagnoses), multiplied by standard symptom prevalence (estimated from systematic reviews). Here we used the pain prevalence (Tables 7 and 8) [73][74][75].
The Brazilian studies of MOH estimate that 90% of cancer patients admitted in hospital for treatment of clinic intercurrence should be considered in need of palliative care. This parameter is addressed to morbidity and not mortality (Table 9) [57].

Comments
The use of health information systems in Brazil allows us to know and to evaluate the process of health management, planning, training  Source: SIH -Hospitalar Information System -(DATASUS) [52].  of health human resources and health services organization. As they contain demographic, morbidity, mortality and financial data, the use of Hospital Information System (SIH/SUS) have been increasingly exploited by health professionals, mainly by its agility and facility of access.
Even though the use of in-patient data have been aimed at the provision and control of hospital spending, which is the purpose for which it is designed, it is at the same time the only in-patient data source for most states and Brazilian municipalities. Considering the  Source: SIH -Hospitalar Information System -(DATASUS) [52]. Source: SIH -Hospitalar Information System -(DATASUS) [52]. WHO: It is assumed that at least 80% of terminal cancer patients will require palliative care; Gomez-Batiste: 60% of patents at the end-of-life needs palliative care; Higginson: Number of people with selected causes of death (cancer and noncancer areas), multiplied by standard symptom prevalence (estimated from systematic reviews)  Source: SIH -Hospitalar Information System -(DATASUS) [52]. WHO: It is assumed that at least 80% of terminal cancer patients will require palliative care; Gomez-Batiste: 60% of patents at the end-of-life needs palliative care; Higginson: Number of people with selected causes of death (cancer and noncancer areas), multiplied by standard symptom prevalence (estimated from systematic reviews) MOH -Brazil.
territorial and population dimensions of Brazil, it is necessary to define health coverage parameters to people in need of palliative care.
Through the hospital admissions of cancer patients in the procedure "Treatment of Clinical Intercurrences of Oncological Patients", we can estimate patients with indication of palliative care at the end of life, as well as identify parameters for the estimated need for cancer palliative care hospital beds. In this regard, we propose studies to size the target population, the demand and supply of health services, the level of attention required by selecting, to that, certain items likely to comparability between national and international data parameters, such as utilization of palliative care services, the prevalence of pain and other symptoms. Also, further study of hospital procedure "Treatment of clinical complications of cancer patient" should be considered as a parameter for scaling of palliative care services in Brazil.