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TOTAL PAIN IN CANCER PATIENTS: THE INTEGRATIVE LITERATURE REVIEW

ABSTRACT

Pain is one of the most feared symptoms by cancer patients and needs to be considered in its entirety. In order to meet this challenge, palliative care, it prevents and alleviates suffering of patients facing life-threatening illnesses, through early identification, assessment and correct intervention in pain that should be considered from the perspective of the whole being, through four components of total pain: physical, psychic, social and spiritual. To understand this complexity, this research aims to investigate the national and international scientific production about total pain in cancer patients. An integrative literature review was peformed, selecting articles published in Portuguese and English, between 2014 and 2019 in the Scientific Electronic Library Online and Pubmed portal databases, using four combinations of descriptors and booleans, with 21,548 files. After applying the exclusion criteria, 25 articles were selected. Studies in English, quantitative and performed by doctors, prevailed. They pointed that among the symptoms, pain is the most prevalent in cancer disease and the major responsible for influencing patients' quality of life negatively. They pointed out the difficulty of health professionals in diagnosing and treating pain in a multidimensional way, with few instruments and protocols that guide the assessment. The conclusion is that for the identification and effective treatment of pain in palliative care patients, the treatment must be considered in its entirety. For this, it is necessary the qualification of health professionals and the creation of instruments that help them to manage pain in its full expression.

Keywords:
Oncology; palliative care; pain

RESUMO

A dor é um dos sintomas mais temidos por pacientes oncológicos e precisa ser considerada em sua integralidade. Com o objetivo de atender esse desafio, os cuidados paliativos previnem e aliviam o sofrimento de pacientes que enfrentam doenças que ameaçam a vida, pela identificação precoce, avaliação e intervenção correta da dor, considerando a integralidade do ser, por meio de quatro componentes da dor total: física, psíquica, social e espiritual. Para entender essa complexidade, a presente pesquisa objetiva analisar a produção científica nacional e internacional sobre dor total em pacientes oncológicos. Realizou-se uma revisão integrativa da literatura, selecionando artigos publicados em português e inglês entre 2014 e 2019, nas bases de dados da Scientific Electronic Library Online e do portal PubMed, por meio de quatro combinações de descritores e booleanos, encontrando-se 21.548 arquivos. Após a aplicação dos critérios de exclusão, foram selecionados 25 artigos. Prevaleceram os estudos em inglês, quantitativos e realizados por médicos. Eles sinalizaram que, dentre os sintomas, a dor é o mais prevalente na doença oncológica e o maior responsável por influenciar negativamente a qualidade de vida dos pacientes. Sinalizaram a dificuldade dos profissionais de saúde em diagnosticar e tratar a dor de forma multidimensional e a ausência de instrumentos e protocolos que norteiam essa avaliação. Conclui-se que, para a identificação e tratamento eficaz da dor de paciente em cuidados paliativos, ela deve ser considerada em sua integralidade. Para tal, fazem-se necessárias a capacitação de profissionais de saúde e a criação de instrumentos que os auxiliem no manejo dessa dor que se expressa de forma total.

Palavras-chave:
Oncologia; cuidados paliativos; dor

RESUMEN

El dolor es uno de los sintomas más temidos por los pacientes con cancer y debe considerarse em su totalidad. Para hacer frente a este desafio, los cuidados paliativos previenen y alivian el sufrimiento de pacientes que enfrentan enfermedades potencialmente mortales, a través de la identificación prematura, evaluación e intervención correcta del dolor, considerando la integralidad del ser, por medio de cuatro componentes del dolor total: física, psíquica, social y espiritual. La presente investigación objetiva examinar la producción científica nacional e internacional sobre dolor total en pacientes oncológicos. Se llevó a cabo una revisión integrativa de la literatura, seleccionando artículos publicados en portugués e inglés, entre 2014 y 2019, en las bases de datos de Scielo y del portal PubMed, encontrándose 21.548 archivos. Tras la aplicación de los criterios de exclusión, fueron seleccionado 25 artículos. Han prevalecido los estudios en inglés, cuantitativos y realizados por médicos. Ellos señalaron que, de entre los síntomas, el dolor es lo más prevalente en lo cancer y el mayor responsable por influenciar negativamente la calidad de vida de los pacientes. Han señalado la dificultad de los profesionales de salud en diagnosticar y tratar el dolor de forma multidimensional y la ausencia de instrumentos y protocolos que guían esa evaluación. Se concluyó que, para la identificación y tratamiento eficaz del dolor de paciente en cuidados paliativos, ella debe ser considerada en su grado completo. Se hacen necesarias la capacitación de profesionales de salud y la creación de instrumentos que los auxilien en el manejo de ese dolor que se expresa de manera total.

Palabras clave:
Oncología; cuidados paliativos; dolor

Introduction

More than 14 million new cases of cancer appear annually in the world and there is an expectation that this number will be three times higher in 2030. Estimates indicate that one in five men and one in six women develop cancer at a given time in life and one in eight men and one in six women die from the disease (World Health Organization [WHO], 2018). In Brazil, cancer occurs in about 190,000 new cases per year; of these, 60% are diagnosed at an advanced stage of the disease, making it the second cause of death in the population, with an estimate of becoming the disease with the highest mortality in the country soon (Instituto Nacional do Câncer José Alencar Gomes da Silva [INCA], 2017).

Data presented by the World Health Organization and the National Cancer Institute draw attention, respectively, to the impact of morbidity and mortality that the disease causes in the world and Brazilian populations. Cancer is generally characterized by aggressive behavior, with treatment marked by invasive and painful procedures and with various side effects, constantly permeated by the possibility of the patient’s death. For this reason, the word ‘cancer’ carries with it an idea of suffering and death. A disease feared not only because of the possibility of finitude, but also because of the way one can die, in pain, in suffering (Almeida & Melo, 2019Almeida, H. R. A.; & Melo, C. F. (2019). Orthothanasia and dignified death in cancer patients: the perception of health professionals. Psicooncología, 16(1), 143-160.).

Cancer is undoubtedly a disease that still involves numerous challenges. One of them is the search for a cure and longer survival for 43.8 million people who have been diagnosed with the disease for at least five years, and thus the field of science constantly have a careful consideration for these patients (WHO, 2018). This index points to the chronic nature of the disease and the need to offer care to the patient in all stages of the illness, be it at diagnosis, treatment or at the end of life (if/when it occurs), always seeking to minimize the patient’s suffering as much as possible (Garcia, Rodrigues, & Lima, 2014Garcia, J. B. S.; Rodrigues, R. F.; & Lima, S. F. (2014). Structuring a palliative care service in Brazil: experience report. Brazilian Journal of Anesthesiology, 64(4), 286-291.).

In search of alleviating this suffering that attempts are made to offer a treatment that has the perspective of promoting quality of life. In this sense, the therapeutic approach of palliative care has been gaining strength and space in the world. This model aims at total, active, comprehensive and preventive care for patients and their families who face problems associated with life-threatening illnesses. Its main objective is the early identification and correct assessment of the treatment of pain and other physical, psychosocial and/or spiritual problems that may occur in the midst of illness (Tegegn & Gebreyohannes, 2017Tegegn, H. G.; & Gebreyohannes, E. A. (2017). Cancer pain management and pain interference with daily functioning among cancer patients in Gondar University Hospital. Pain Research and Management 2017, 5698640.).

With the proposal of a comprehensive view of the patient and having as a priority the promotion of quality of life at any stage of the illness, the palliative care approach is in opposition to the biomedical model, which fragments and silences the subject, as it takes into account the patient, and not the disease, valuing their needs, complaints, seeing them in their entirety, as predicted by the biopsychosocial model of health care. It is with this attention to health that one of the major concerns of palliative care is to control symptoms. In particular, with regard to cancer patients, pain has been the most feared symptom by patients and the most challenging control for professionals in ensuring such care (Barata et al., 2016Barata, P.; Santos, F.; Mesquita, G.; Cardoso, A.; Custódio, M. P.; Alves, M.; Lawlor, P. (2016). Associação da intensidade de dor no tempo até à morte dos doentes oncológicos referenciados aos cuidados paliativos. Acta Médica Portuguesa, 29(11), 694-701.; Garcia et al., 2014Garcia, J. B. S.; Rodrigues, R. F.; & Lima, S. F. (2014). Structuring a palliative care service in Brazil: experience report. Brazilian Journal of Anesthesiology, 64(4), 286-291.).

Cancer pain, also referred to as cancer pain, is defined by any pain felt in close connection with the disease. It can be associated with numerous aspects of the illness, such as the tumor itself and the symptoms arising from the treatment and the proliferation of the disease in the body through metastases and the emergence of new cancers from relapse (Freire, Costa, Lima, & Sawada, 2018Freire, M. E. M.; Costa, S. F. G.; Lima, R. A. G.; & Sawada, N. O. (2018). Health-related quality of life of patients with cancer in palliative care. Texto & Contexto - Enfermagem, 27(2), e5420016.). It is present in about 60% to 80% patients, affecting them in all stages of the illness - in 20% to 30% patients in the initial stage and in 75% patients in the advanced stage (Barata et al., 2016Barata, P.; Santos, F.; Mesquita, G.; Cardoso, A.; Custódio, M. P.; Alves, M.; Lawlor, P. (2016). Associação da intensidade de dor no tempo até à morte dos doentes oncológicos referenciados aos cuidados paliativos. Acta Médica Portuguesa, 29(11), 694-701.; Costa, Monteiro, Queiroz, & Gonçalves, 2017).

Present at various times of illness, cancer pain is often responsible for affecting the patient’s functional activities, causing changes in sleep, feelings of fatigue, mood disorders, depression, anxiety, social isolation, among others. Because of its interference in the patient’s life, it is considered one of the most compromising factors of quality of life in cancer illness, especially in more advanced stages of the disease, sometimes being difficult to control (Freire et al., 2018Freire, M. E. M.; Costa, S. F. G.; Lima, R. A. G.; & Sawada, N. O. (2018). Health-related quality of life of patients with cancer in palliative care. Texto & Contexto - Enfermagem, 27(2), e5420016.; Mendes, Boaventura, Castro, & Mendonça, 2014Mendes, T. R.; Boaventura, R. P.; Castro, M. C.; & Mendonça, M. A. O. (2014). Ocorrência da dor nos pacientes oncológicos em cuidado paliativo. Acta Paulista de Enfermagem, 27(4), 356-361.; Oh et al., 2017Oh, S. Y.; Shin, S. W.; Koh, S.-J.; Bae, S. B.; Chang, H.; Kim, J. H. Kim, H. J. (2017). Multicenter, cross-sectional observational study of the impact of neuropathic pain on quality of life in cancer patients. Supportive Care in Cancer, 25(12), 3759-3767.).

Better pain control can be extremely complex and challenging for health professionals working with palliative care, because it is a unique, subjective and genuinely personal experience. This means that the perception of the pain symptom by the patient goes beyond the painful sensation in the body, it permeates their affective and emotional experiences (Costa et al., 2017Costa, W. A.; Monteiro, M. N.; Queiroz, J. F.; & Gonçalves, A. K. (2017). Pain and quality of life in breast cancer patients. Clinics, 72(12), 758-763.).

In this sense, recognizing the integrality of the patient, pain must be understood as a multidimensional and complex experience, which needs to be evaluated in its cognitive and affective perception, beyond the discomforts in the body (Costa et al., 2017Costa, W. A.; Monteiro, M. N.; Queiroz, J. F.; & Gonçalves, A. K. (2017). Pain and quality of life in breast cancer patients. Clinics, 72(12), 758-763.). On this aspect, Phenwan (2018Phenwan, T. (2018). Relieving total pain in an adolescent: a case report. BMC Research Notes, 11, 265.) points out that it is necessary to consider the manifestation and understanding of the painful symptom from the perspective of four dimensions that constitute pain: physical, psychic, social and spiritual, composing the so-called ‘total pain’.

Perez, Olivier, Rampakakis, Borod and Shir (2016Perez, J.; Olivier, S.; Rampakakis, E.; Borod, M.; & Shir, Y. (2016). The McGill University Health Centre Cancer Pain Clinic: a retrospective analysis of an interdisciplinary approach to cancer pain management. Pain Research & Management, 2157950.) state that the pain experienced by patients with a life-threatening illness, such as cancer is total pain, which demands from health professionals a broader understanding, evaluation and care of the multiple contours that involve it. In this perspective, palliative care has the challenge of breaking the reductionism that fragments the subject and takes care exclusively of physical pain. It looks at pain under a multifaceted panel of causes.

Given the above, it is necessary to debate the current scenario, in which patients continue to die in dysthanasia and in pain (Valadares, Mota, & Oliveira, 2014Valadares, M. T. M.; Mota, J. A. C.; & Oliveira, B. M. (2014). Palliative care in pediatric hematological oncology patients: experience of a tertiary hospital. Revista Brasileira de Hematologia e Hemoterapia, 36(6), 403-408.). To this end, there is a growing need to understand how the care approach has been taken for these patients, showing what the current pain control and management practices are (Kim et al., 2015Kim, Y.-C.; Ahn, J. S.; Calimag, M. M. P.; Chao, T. C.; Ho, K. Y.; Tho, L. M.; … & Bhagat, A. (2015). Current practices in cancer pain management in Asia: a survey of patients and physicians across 10 countries. Cancer Medicine, 4(8), 1196-1204.). In response to this demand, this research aimed to analyze the national and international scientific production on the performance of health professionals on the total pain of patients with cancer. It is intended, therefore, to contribute to studies that investigate the subject, subsidizing the decision-making on the singular therapeutic project of the patients in favor of the relief of their pain.

Method

Type of study

This was an integrative literature review. This, when compared to critical review, is considered of better scientific quality, due to its standardized and clearly defined method to avoid bias in the selection of studies (Galvão, Pansani, & Harrad, 2015Galvão, T. F.; Pansani, T. S. A.; & Harrad, D. (2015). Principais itens para relatar revisões sistemáticas e meta-análises: a recomendação Prisma. Epidemiologia e Serviços de Saúde, 24(2), 335-342.).

Thus, for operationalization, the procedures proposed by the authors were adopted: (1) delimitation of the question to be researched; (2) choice of data sources; (3) choice of keywords for the search; (4) search and storage of results; (5) selection of articles by abstract, according to inclusion and exclusion criteria; (6) extraction of data from selected articles; (7) evaluation of articles; and (8) data synthesis and interpretation.

Search strategies: databases and inclusion and exclusion criteria

Following international protocols for systematic and integrative review studies, the guiding question was defined by the PICO method (P = participants; I = intervention; C = comparison; O = result/outcome), based on adaptations relevant to the area where this research is located: do health professionals (P) consider total pain (I) when caring for cancer patients (O)? (Santos, Pimenta, & Nobre, 2007Santos, C. M. C.; Pimenta, C. A. M.; & Nobre, M. R. C. (2007). A estratégia PICO para a construção da pergunta de pesquisa e busca de evidências. Revista Latino-Americana de Enfermagem, 15(3), 508-511.). The process of selection and categorization of articles was carried out manually, without the use of any reference manager for selection and classification. This process was carried out by two independent judges, authors of the present article, researchers with a master's and doctor's degree in psychology and with academic and practical experience in the subject addressed, who developed this activity guided by the guidelines of the PRISMA protocol (Galvão et al., 2015Galvão, T. F.; Pansani, T. S. A.; & Harrad, D. (2015). Principais itens para relatar revisões sistemáticas e meta-análises: a recomendação Prisma. Epidemiologia e Serviços de Saúde, 24(2), 335-342.).

The literature was selected between July and August 2019, through the selection of articles published in Portuguese and English in the Scientific Electronic Library Online (SciELO) databases and the PubMed portal. The search keywords used were previously consulted in the Psychology Terminology of the Virtual Health Library (VHL - Psi) and in the Health Sciences Descriptors (DeCS). Complementarily, keywords were added from consultations carried out in articles published on the subject and that did not have as keywords those present in these indexes. In the end, it was decided to use different combinations of descriptors and Boolean operators: (1) ‘Total pain’ AND ‘Cancer’; (2) ‘Cancer pain’ AND ‘Palliative care’; (3) ‘Total pain’ AND ‘Cancer’; and (4) ‘Cancer pain’ AND ‘Palliative care’.

The search for articles was based on predefined inclusion criteria: complete articles, available in full, indexed, freely accessible, in Portuguese and English, published between 2014 and 2019, with the aim of mapping the most recent production - within the last six years. Works that did not provide their complete form, repeated articles and texts that did not describe empirical studies and publications called gray literature (theses, dissertations, monographs, reports, official documents not commercially published, among others) were not included in the research.

Data extraction

A table was constructed to characterize the articles included in the review, after the survey and exclusion process. Data were organized into two groups of information: article identification (title, year, study location, journal, authors) and article characteristics (type of study, objective(s), methodological approach and summary of the main results related to the theme cancer patient’s pain).

Data analysis

To obtain an understanding and synthesis of the results, two types of analysis were performed. Initially, through analysis of simple descriptive statistics (calculation of frequencies) on the identification data of the article, the quantitative profile of the scientific production was traced, especially with regard to the following indicators: language, country where the research was carried out, year of publication, methodological approach (quantitative, qualitative and multimethod), subjects participating in the research and instrument used for data collection. In the second analysis, for a better visualization of how the theme has been approached, the contents were organized and synthesized through Content Analysis (Bardin, 1977Bardin, L. (1977). Análise de conteúdo (L. A. Reto e A. Pinheiro, trads.). Lisboa, PT: Edições 70.) for the qualitative characterization of scientific productions.

Results and discussion

Article selection process

In the first search, free of filters, a total of 21,548 records were obtained by means of the selected descriptors and Boolean operators: ‘Total pain’ AND ‘Cancer’ (307 = 52 in SciELO and 255 in PubMed); ‘Cancer pain’ AND ‘Palliative care’ (31 = 28 in SciELO and 3 in PubMed); ‘Total pain’ AND ‘Cancer’ (12,701 = 142 in SciELO and 12,559 in PubMed); and ‘Cancer pain’ AND ‘Palliative care’ (8,509 = 73 in SciELO and 8,436 in PubMed). After applying the inclusion criteria, the texts were reduced to 3,060 scientific articles.

Next, the exclusion criteria were applied to the 3,060 previously selected records, reducing 3,028 of these records, as they were listed repeatedly (f = 35); gray literature; texts unrelated to the theme addressed or that did not respond to the guiding research question; and texts that did not describe empirical studies (f = 2,993). After the selection and exclusion process, 32 articles remained for full reading. Finally, after reading the articles, seven were eliminated, as it was perceived that they did not correspond to the objective of the research, remaining 25 articles for analysis.

Figure 1 Flowchart of article selection in SciELO and PubMed databases.

Quantitative profile of the research

Analyzing the 25 articles in relation to the number of publications each year, there were no large peaks in production over the period analyzed (2014 - 2019), as it is a current and widely studied topic (Almeida & Melo, 2019Almeida, H. R. A.; & Melo, C. F. (2019). Orthothanasia and dignified death in cancer patients: the perception of health professionals. Psicooncología, 16(1), 143-160.).

Box 1
Articles analyzed in the systematic review on total pain and palliative care in cancer patients

With regard to language, the largest number of publications were in English, 22 articles (88%), followed by three (12%) in Portuguese, following the worldwide trend of recognizing this language as the international language of science (Di Bitetti & Ferreiras, 2016Di Bitetti, M. S.; & Ferreras, J. A. (2016). Publish (in English) or perish: the effect on citation rate of using languages other than English in scientific publications. Ambio, 46(1), 121-127.). Of the 25 studies, nine (36%) were carried out in Brazil, four (16%) in South Korea, two (8%) in Taiwan, two (8%) in Japan and, indicating less representativeness of studies related to the theme, Thailand, Portugal, Canada, China, Tanzania, Ecuador, Lebanon and Ethiopia were found in only one (4%) production each. Given the scenario that different regions of the world are publishing on the subject, this is a growing area.

All the main authors of the articles are trained in the health area. There are 16 (64%) physicians, who correspond to the largest research professional class in this study, followed by six (24%) nurses, two (8%) pharmacists and one (4%) Bachelor of Science. Professionals from other categories who are part of interdisciplinary palliative care teams, such as psychologists, social workers, physical therapists, among others, were not identified as first authors. As a consequence, the journal areas in which the articles were published were: medicine, nursing, pain studies, oncology and palliative care. It is observed that, despite the fact that total pain is a health issue that involves a comprehensive view, requiring the action of the most different professionals from the interdisciplinary team, this topic has been researched as a priority by professionals who have a direct role in controlling physical symptoms (Almeida & Melo, 2019Almeida, H. R. A.; & Melo, C. F. (2019). Orthothanasia and dignified death in cancer patients: the perception of health professionals. Psicooncología, 16(1), 143-160.).

When analyzing the method, 18 (72%) articles used a quantitative approach, six (24%) qualitative and one (4%) multimethod. The predominance of quantitative studies is because most studies are in the area of medical sciences, in which many experimental and large-scale surveys are carried out. Regarding the research participants, 19 (76%) studies focused on understanding pain from the patient’s perspective, four (16%) analyzed it from the perspective of health professionals and two (8%) from patients and professionals. The focus of research on the two main actors involved in the health care relationship was observed, although none of them included the family and caregivers, who are also part of this process (Almeida & Melo, 2019Almeida, H. R. A.; & Melo, C. F. (2019). Orthothanasia and dignified death in cancer patients: the perception of health professionals. Psicooncología, 16(1), 143-160.).

As an instrument for data collection, seven (28%) studies used interview scripts, 22 (88%) used scales, questionnaires and forms, with the objective of evaluating pain, and four (16%) analyzed clinical records as a means of investigation to evaluate the treatment and the response of the therapy used for pain in patients. Some studies used more than one of the instruments presented. A multiplicity of instruments and techniques for analysis and study of total pain was evident, which still lacks unique instruments for its evaluation.

Box 2
Characterization of the frequency of data extracted from the articles analyzed

Qualitative characterization of productions

The 25 selected articles were organized into categories (the same article may include content from more than 01 category), so that, in this way, the subjects addressed could be better visualized. For the organization and classification, the proximity of the themes addressed by scientific texts was taken into account, in order to allow the presentation and discussion of the findings in the studies. At the end of the division, the following categories were listed: 1) holistic understanding of cancer pain (f = 10); 2) relationship between quality of life and pain in palliative care patients (f = 9); 3) total pain assessment: possibilities and difficulties (f = 9).

1) Holistic understanding of cancer pain

This category included ten articles (f = 10) that deal with multifactorial aspects related to the perception and sensation of pain by the patient. They discuss cancer pain beyond the physical sensation, taking into account emotional, social and spiritual factors, among other variables that are related and make up pain.

Pain is the most prevalent symptom in patients with advanced cancer, being present in more than 40%, even in the face of advances in the approach and therapeutic orientation of palliative care (Barata et al., 2016Barata, P.; Santos, F.; Mesquita, G.; Cardoso, A.; Custódio, M. P.; Alves, M.; Lawlor, P. (2016). Associação da intensidade de dor no tempo até à morte dos doentes oncológicos referenciados aos cuidados paliativos. Acta Médica Portuguesa, 29(11), 694-701.). The studies carried out by Barata et al. (2016)Barata, P.; Santos, F.; Mesquita, G.; Cardoso, A.; Custódio, M. P.; Alves, M.; Lawlor, P. (2016). Associação da intensidade de dor no tempo até à morte dos doentes oncológicos referenciados aos cuidados paliativos. Acta Médica Portuguesa, 29(11), 694-701., Costa et al. (2017Costa, W. A.; Monteiro, M. N.; Queiroz, J. F.; & Gonçalves, A. K. (2017). Pain and quality of life in breast cancer patients. Clinics, 72(12), 758-763.) and Xu, Ou, Xie, Cheng and Chen (2019Xu, X.; Ou, M.; Xie, C.; Cheng, Q.; & Chen, Y. (2019). Pain acceptance and its associated factors among cancer patients in Mainland China: a cross-sectional study. Pain Research & Management 2019, 9458683.) point out that the control and relief of cancer-related pain are much more complex than the use of medication, as it is a multidimensional experience. Symptomatic intensity depends on the physical, psychological, social and spiritual aspects experienced by the patient. Several variables, such as fatigue, insomnia, fear, anxiety, anger, depression, social isolation, changes in self-image perception and impaired functional capacity affect the perception of pain experienced by patients. Barata et al. (2016)Barata, P.; Santos, F.; Mesquita, G.; Cardoso, A.; Custódio, M. P.; Alves, M.; Lawlor, P. (2016). Associação da intensidade de dor no tempo até à morte dos doentes oncológicos referenciados aos cuidados paliativos. Acta Médica Portuguesa, 29(11), 694-701., Costa et al. (2017)Costa, W. A.; Monteiro, M. N.; Queiroz, J. F.; & Gonçalves, A. K. (2017). Pain and quality of life in breast cancer patients. Clinics, 72(12), 758-763. and Xu et al. (2019)Xu, X.; Ou, M.; Xie, C.; Cheng, Q.; & Chen, Y. (2019). Pain acceptance and its associated factors among cancer patients in Mainland China: a cross-sectional study. Pain Research & Management 2019, 9458683. show that each of these influencers suffered variations, according to individual factors and circumstances faced by the patients themselves.

Based on these findings, pain can often be an experience that is experienced through physical sensations, but biological and/or physiological issues are not always at the heart of its constitution, making it necessary and of great importance to consider total pain in the evaluation of cancer pain, giving due emphasis to all the factors that compose it as a holistic experience, be they: physical, environmental, emotional, social and spiritual.

The holistic and total aspects intrinsic to the experience of cancer-related pain are evident in patients who, even using analgesia, have high levels of pain. This may be related to psychiatric disorders, such as depression, as well as spiritual fragility due to the intensity of the painful symptom (Lee et al., 2015Lee, Y.-P.; Wu, C.-H.; Chiu, T.-Y.; Chen, C.-Y.; Morita, T.; Hung, S.-H.; … & Tsai, J.-S. (2015). The relationship between pain management and psychospiritual distress in patients with advanced cancer following admission to a palliative care unit. BMC Palliative Care, 14, 69.; Silva, Araújo, Cardoso, & Cardoso, 2015Silva, J. O.; Araújo, V. M. C.; Cardoso, B. G. M.; & Cardoso, M. G. M. (2015). Spiritual dimension of pain and suffering control of advanced cancer patient. Case report. Revista Dor, 16(1), 71-74.). Complementarily, it was observed that emotions and a sense of psychological well-being are also closely related to cancer pain relief, while depression and anxiety are negatively correlated with pain acceptance (Xu et al., 2019Xu, X.; Ou, M.; Xie, C.; Cheng, Q.; & Chen, Y. (2019). Pain acceptance and its associated factors among cancer patients in Mainland China: a cross-sectional study. Pain Research & Management 2019, 9458683.).

In these cases, the provision of therapeutic assistance by health professionals, with a focus on holistic and active care, has shown a less aggressive expression of cancer pain and an improvement in the psycho-spiritual suffering presented by patients. Health professionals play an essential role in this action, given that it was noticed that by increasing the patient’s ‘expectations’ in relation to pain relief, these can be reduced. Therefore, the patient’s relationship of trust in the team becomes essential (Matsuoka et al., 2017Matsuoka, H.; Yoshiuchi, K.; Koyama, A.; Makimura, C.; Fujita, Y.; Tsurutani, J.;… & Nakagawa, K. (2017). Expectation of a decrease in pain affects the prognosis of pain in cancer patients: a prospective cohort study of response to morphine. International Journal of Behavioral Medicine, 24(4), 535-541.).

The relationship with the health team, social and family support are fundamental elements in the treatment of cancer pain. As it is a total pain, involving multiple contours, the influence of these elements contribute to the relief of this symptom in the treatment of cancer patients (Phenwan, 2018Phenwan, T. (2018). Relieving total pain in an adolescent: a case report. BMC Research Notes, 11, 265.). Studies indicate that the team’s performance, through an interdisciplinary approach, centered on personalized care to the patient’s needs, focusing on the dimensions of total pain, contribute and bring relief to this and other symptoms related to the disease. This relief is possible both in therapies that use analgesia and non-pharmacological therapies, and in therapies without the use of analgesia, but with the support of a specialized team (Hartwig et al., 2014Hartwig, K.; Dean, M.; Hartwig, K.; Mmbando, P. Z.; Sayed, A.; & Vries, E. (2014). Where there is no morphine: the challenge and hope of palliative care delivery in Tanzania. African Journal of Primary Health Care & Family Medicine, 6(1), 549.; Perez et al., 2016Perez, J.; Olivier, S.; Rampakakis, E.; Borod, M.; & Shir, Y. (2016). The McGill University Health Centre Cancer Pain Clinic: a retrospective analysis of an interdisciplinary approach to cancer pain management. Pain Research & Management, 2157950.; Phenwan, 2018; Silva et al., 2018Silva, T. P.; Leite, J. L.; Stinson, J.; Lalloo, C.; Silva, I. R.; & Jibb, L. (2018). Estratégias de ação e interação para o cuidado à criança hospitalizada com dor oncológica crônica. Texto & Contexto - Enfermagem, 27(4), e3990017.).

In line with the findings, in the pediatric context, the use of play, dialogue, empathy, affective relationships and teamwork as interaction strategies to care for the child and the family member, has contributed to the management and relief of pain related to cancer. In addition to the use of medications, these strategies become a priority in the care of hospitalized children with chronic pain, providing quality to the service provided (Silva et al., 2018Silva, T. P.; Leite, J. L.; Stinson, J.; Lalloo, C.; Silva, I. R.; & Jibb, L. (2018). Estratégias de ação e interação para o cuidado à criança hospitalizada com dor oncológica crônica. Texto & Contexto - Enfermagem, 27(4), e3990017.).

Given the data, it can be stated that cancer pain is a subjective and multifaceted experience. Because it is subjective, the perception of pain is influenced by several variables that appear according to the experience of their implications in the patient’s life. Because it is multifaceted, pain is experienced in multiple ways and should be conceived as a complex phenomenon that needs to be understood and considered in a holistic and total way, considering the physical, emotional, spiritual, social and functional sensations that involve the patient.

In this sense, the multidisciplinary care proposal to guarantee comprehensive health care and pain relief for cancer patients, which considers the assessment of total pain and the promotion of quality of life, shows more benefits in relieving this symptom than supports that seek only relief based on analgesic medications, as these are limited to the physical constitution of pain, and this comprises only one of its facets.

2) Relationship between quality of life and pain in patients in palliative care

This category encompassed nine articles (f = 9) that deal with the relationship between cancer pain and quality of life (QoL), especially health-related quality of life (HRQoL) (it is about how people perceive their physical and mental health; it is a measure of the impact of the disease on the patient). They mainly address how the QoL of patients in an advanced stage of the disease is affected by pain. They emphasize the role of palliative care teams in guaranteeing a better QoL in the face of the worsening of the disease.

Many patients, even in the face of technological advances in health, still receive a late diagnosis of cancer, with the disease acting in the body aggressively and without response to curative treatment. Cancer at an advanced stage exposes the patient to a variety of signs and symptoms, in which pain is the most responsible for negatively influencing the QoL of patients (Costa et al., 2017Costa, W. A.; Monteiro, M. N.; Queiroz, J. F.; & Gonçalves, A. K. (2017). Pain and quality of life in breast cancer patients. Clinics, 72(12), 758-763.; Freire et al., 2018Freire, M. E. M.; Costa, S. F. G.; Lima, R. A. G.; & Sawada, N. O. (2018). Health-related quality of life of patients with cancer in palliative care. Texto & Contexto - Enfermagem, 27(2), e5420016.).

Thus, cancer-related pain is considered inversely proportional to QoL. Patients with this symptom have the worst HRQoL compared to patients without pain. They tend to develop psychiatric comorbidities - such as anxiety and depression - and it is mainly in the most severe phase of the disease that disturbances in mood, sleep and physical limitations caused by pain become more expressive (Baek et al., 2016Baek, S. K.; Kim, D. Y.; Kang, S. Y.; Sym, S. J.; Kim, Y. S.; & Lee, J. Y. (2016). A Korean nationwide survey for breakthrough cancer pain in an inpatient setting. Cancer Research and Treatment, 48(2), 768-774.; Gordillo Altamirano, Fierro Torres, Cevallos Salas, & Cervantes Vélez, 2017Gordillo Altamirano, F.; Fierro Torres, M. J.; Cevallos Salas, N.; & Cervantes Vélez, M. C. (2017). Mental health determines the quality of life in patients with cancer-related neuropathic pain in Quito, Ecuador. Revista Colombiana de Psiquiatría, 46(3), 154-160.; Oh et al., 2017Oh, S. Y.; Shin, S. W.; Koh, S.-J.; Bae, S. B.; Chang, H.; Kim, J. H. Kim, H. J. (2017). Multicenter, cross-sectional observational study of the impact of neuropathic pain on quality of life in cancer patients. Supportive Care in Cancer, 25(12), 3759-3767.; Rau et al., 2015Rau, K.-M.; Chen, J.-S.; Wu, H.-B.; Lin, S.-F.; Lai, M.-K.; Chow, J.-M. ... Hsieh, R. K. (2015). The impact of pain control on physical and psychiatric functions of cancer patients: a nation-wide survey in Taiwan. Japanese Journal of Clinical Oncology, 45(11), 1042-1049.). In this sense, and in view of the damage to the patient’s quality of life, caused by physical and emotional weaknesses, better pain control strategies that include more comprehensive care need to be adopted in all stages of the illness.

The prescription of more appropriate drugs should be considered in this more comprehensive care (Baek et al., 2016Baek, S. K.; Kim, D. Y.; Kang, S. Y.; Sym, S. J.; Kim, Y. S.; & Lee, J. Y. (2016). A Korean nationwide survey for breakthrough cancer pain in an inpatient setting. Cancer Research and Treatment, 48(2), 768-774.). These, when poorly administered, due to their side effects, the constancy and intensity of pain, impair the effectiveness of palliative therapy and negatively affecting the QoL of patients in their four domains (physical, psychological, social relationships and relationships with the environment) (Barata et al., 2016Barata, P.; Santos, F.; Mesquita, G.; Cardoso, A.; Custódio, M. P.; Alves, M.; Lawlor, P. (2016). Associação da intensidade de dor no tempo até à morte dos doentes oncológicos referenciados aos cuidados paliativos. Acta Médica Portuguesa, 29(11), 694-701.; Mendes et al., 2014Mendes, T. R.; Boaventura, R. P.; Castro, M. C.; & Mendonça, M. A. O. (2014). Ocorrência da dor nos pacientes oncológicos em cuidado paliativo. Acta Paulista de Enfermagem, 27(4), 356-361.).

However, the effects of cancer pain on QoL are not only related to the intensity with which it is experienced by patients, but also how it is perceived in its multidimensional aspect (Costa et al., 2017Costa, W. A.; Monteiro, M. N.; Queiroz, J. F.; & Gonçalves, A. K. (2017). Pain and quality of life in breast cancer patients. Clinics, 72(12), 758-763.). In this sense, it is emphasized that health institutions need to provide palliative care service specialized in pain control, with qualified professionals, who understand the relief of discomfort experienced by this symptom as a human right and as a desire to offer higher QoL for the patient (Garcia et al., 2014Garcia, J. B. S.; Rodrigues, R. F.; & Lima, S. F. (2014). Structuring a palliative care service in Brazil: experience report. Brazilian Journal of Anesthesiology, 64(4), 286-291.).

In this way, the need for a broader understanding of pain is evident, as the very concept of QoL considers the influences of emotional, environmental/social and spiritual factors, even though these have not been worked on in depth in studies presented. From this perspective, the need to improve cancer pain intervention strategies is reinforced, considering the complex nature of its diagnosis and treatment.

3) Total pain assessment: possibilities and difficulties

This category comprised nine articles (f = 9), whose main focus is the evaluation of cancer pain. They emphasize the need for pain assessment instruments that can guide the diagnosis and practice of health professionals. They point out the difficulties these professionals have in accessing and knowing these instruments. They reveal the pain of cancer as undertreated and neglected in its evaluation and diagnosis.

Understanding cancer patient pain as a manifestation of a complex symptom, Mello, Almeida, Pruinelli and Lucena (2019Mello, B. S.; Almeida, M. A.; Pruinelli, L.; & Lucena, A. F. (2019). Nursing outcomes for pain assessment of patients undergoing palliative care. Revista Brasileira de Enfermagem, 72(1), 64-72.), Okimasa et al. (2016Okimasa, S.; Saito, Y.; Okuda, H.; Fukuda, T.; Yano…, M.; Okamoto, Y.; Ohdan, H. (2016). Assessment of cancer pain in a patient with communication difficulties: a case report. Journal of Medical Case Reports, 10, 148.), Perez et al. (2016Perez, J.; Olivier, S.; Rampakakis, E.; Borod, M.; & Shir, Y. (2016). The McGill University Health Centre Cancer Pain Clinic: a retrospective analysis of an interdisciplinary approach to cancer pain management. Pain Research & Management, 2157950.) and Valadares et al. (2014Valadares, M. T. M.; Mota, J. A. C.; & Oliveira, B. M. (2014). Palliative care in pediatric hematological oncology patients: experience of a tertiary hospital. Revista Brasileira de Hematologia e Hemoterapia, 36(6), 403-408.) indicate that the evaluation for the appropriate treatment of total pain can be extremely challenging, requiring multiple specialties for such approach, combined with evaluative instruments that allow pain to be analyzed in a multidimensional way. The integration of these factors enables better management of cancer pain and favors greater success in symptom relief.

Nevertheless, this integration of care is not always achieved. Pain, even though it is the most prevalent symptom in patients referred to palliative care teams and this is the approach recognized as a reality for managing cancer pain, it is clear that there are still obstacles in the provision of assistance and in the evaluation of this symptom (Mello et al., 2019Mello, B. S.; Almeida, M. A.; Pruinelli, L.; & Lucena, A. F. (2019). Nursing outcomes for pain assessment of patients undergoing palliative care. Revista Brasileira de Enfermagem, 72(1), 64-72.; Okimasa et al., 2016Okimasa, S.; Saito, Y.; Okuda, H.; Fukuda, T.; Yano…, M.; Okamoto, Y.; Ohdan, H. (2016). Assessment of cancer pain in a patient with communication difficulties: a case report. Journal of Medical Case Reports, 10, 148.; Valadares et al., 2014Valadares, M. T. M.; Mota, J. A. C.; & Oliveira, B. M. (2014). Palliative care in pediatric hematological oncology patients: experience of a tertiary hospital. Revista Brasileira de Hematologia e Hemoterapia, 36(6), 403-408.). Some patients, unfortunately, are not submitted to any evaluation instrument that can guide the drug prescription for the pain signaled by them, allowing many to die, feeling pain (Valadares et al., 2014Valadares, M. T. M.; Mota, J. A. C.; & Oliveira, B. M. (2014). Palliative care in pediatric hematological oncology patients: experience of a tertiary hospital. Revista Brasileira de Hematologia e Hemoterapia, 36(6), 403-408.).

As a consequence, although there are some guidelines that refer professionals to the treatment of cancer pain, some patients are still undertreated or neglected in their demands. Some factors are pointed out as facilitators for inadequate assistance in controlling this symptom: 1) the lack of a gold standard, an instrument with easy and quick language for assessing cancer pain, considering that time should not be wasted in a critical clinical situation; 2) the lack of an instrument that assesses pain in a complex way, covering aspects of its totality; 3) the lack of specific training on the part of health professionals who treat patients with this demand; and 4) the inconsistent availability of analgesics linked to inadequate training in medical schools about opioids, contribute to the deficiency in patient care in their need (Hamieh et al., 2018Hamieh, N. M.; Akel, R.; Anouti, B.; Traboulsi, C.; Makki, I.; Hamieh, L.; & Tfayli, A. (2018). Cancer-related pain: prevalence, severity and management in a tertiary care center in the Middle East. Asian Pacific Journal of Cancer Prevention, 19(3), 769-775.; Jho et al., 2014Jho, H. J.; Kim, Y.; Kong, K. A.; Kim, D. H.; Choi, J. Y.; Nam, E. J.;… Park, E. J. (2014). Knowledge, practices, and perceived barriers regarding cancer pain management among physicians and nurses in Korea: a nationwide multicenter survey. PloS One, 9(8), e105900.; Kim et al., 2015Kim, Y.-C.; Ahn, J. S.; Calimag, M. M. P.; Chao, T. C.; Ho, K. Y.; Tho, L. M.; … & Bhagat, A. (2015). Current practices in cancer pain management in Asia: a survey of patients and physicians across 10 countries. Cancer Medicine, 4(8), 1196-1204.; Miranda et al., 2016Miranda, B.; Vidal, S. A.; Mello, M. J. G.; Lima, J. T. O.; Rêgo, J. C.; Pantaleão, M. C.; ... Costa Júnior, J. I. (2016). Cancer patients, emergencies service and provision of palliative care. Revista da Associação Médica Brasileira, 62(3), 207-211.; Okimasa et al., 2016Okimasa, S.; Saito, Y.; Okuda, H.; Fukuda, T.; Yano…, M.; Okamoto, Y.; Ohdan, H. (2016). Assessment of cancer pain in a patient with communication difficulties: a case report. Journal of Medical Case Reports, 10, 148.; Tegegn & Gebreyohannes, 2017Tegegn, H. G.; & Gebreyohannes, E. A. (2017). Cancer pain management and pain interference with daily functioning among cancer patients in Gondar University Hospital. Pain Research and Management 2017, 5698640.).

These facts suggest that inadequate pain assessment can be identified as a barrier to therapy optimization and that inadequate practices in this assessment, associated with undermanagement, contribute to the reduction of QoL in a large number of cancer patients. As a consequence, in addition to the suffering experienced by patients, there is a greater search for hospital urgency/emergency services (Miranda et al., 2016Miranda, B.; Vidal, S. A.; Mello, M. J. G.; Lima, J. T. O.; Rêgo, J. C.; Pantaleão, M. C.; ... Costa Júnior, J. I. (2016). Cancer patients, emergencies service and provision of palliative care. Revista da Associação Médica Brasileira, 62(3), 207-211.).

Thus, it is vital to anticipate and assess cancer patients’ pain as a routine clinical practice to optimize interventions and adequacy barriers in pain management and improve patients’ health outcomes. Therefore, it is necessary to reduce the limitations of health professionals regarding knowledge of conducts and procedures within the medical areas and related to cancer pain. There is an urgent need for changes in the educational strategy that can support and improve clinical practice, to emphasize awareness of cancer pain and to adequately guide patients and families, so that everyone can contribute to the management of cancer pain control, of total pain.

Final considerations

Pain is the most expressed and feared symptom by cancer patients. It is experienced with greater prevalence in patients with advanced-stage cancer and is considered to be most responsible for directly and significantly affecting the quality of life of patients, contributing to suffering and difficulties of various kinds, whether physical, psychological, functional, social and/or spiritual.

Based on studies pointed out in this research, it is understood that the pain experienced by cancer patients is a complex symptom, that is, its genesis and consequences affect the patient’s life in its entirety. It is possible to perceive cancer pain as an experience that goes far beyond painful expression. Thus, it is necessary to consider a care approach that goes beyond the obvious (physical dimension) and can consider the component aspects of the patient’s need through the expression of the painful symptom, whether physical, social, spiritual and/or emotional.

In this sense, it is necessary to consider a multidisciplinary professional approach that allows a holistic look at this symptom, which can consider it in its entirety already at the time of evaluation/diagnosis. This conduct enables the health professional to obtain subsidies that allow tracing a unique therapeutic project to the symptomatic complexity and the patient’s needs.

However, even in the face of this need, it was observed during the research the prevalence of studies emphasizing the look at the painful symptom in its physical connotation, seeking its anesthetization through the use of analgesics, believing that this is the most effective way of treating the patient’s suffering. Nevertheless, it became clear that when a patient with cancer, more evidently those who experience it in an advanced stage, complains of pain, they report far beyond the part of a body that suffers, they bring to the fore the subject - a whole that suffers. In this sense, treatment with medication, although important and necessary, when done exclusively, is not effective. In this way, cancer pain is occasionally undertreated, thus allowing the continuation of suffering.

Health professionals’ lack of knowledge about ways to understand, assess and treat cancer pain, which is total pain, also appears as evidence that has contributed to the neglect of this symptom. It is believed that, in order to minimize this situation, it is necessary to understand the complexity of cancer pain as a subjective symptom with multiple constitutions.

For a correct assessment of pain and its most appropriate treatment, it is essential to include a multidisciplinary team throughout the process. This understanding also involves knowledge of instruments and assessment scales that already exist, however it is necessary to make it clear that these instruments, for the most part, seek to understand and evaluate the pain expressed by the patient only by isolated aspects, raising the need to develop instruments that can assess pain, taking into account the care provided in its entirety.

In this sense, the therapeutic perspective of palliative care has been shown to be increasingly effective in caring for patients who experience cancer pain, given that this approach provides for the promotion of the patient’s quality of life and, consequently, pain and suffering relief experienced by them when considering the physical, social, psychic and/or spiritual aspects belonging to the complexity of this symptom.

As a limitation of the present study, it is possible to observe a lack of studies aimed at understanding total pain more clearly, this difficulty is even expressed in the lack of a consensual descriptor on the subject, noting the use of total pain and cancer pain as synonyms. Further studies on total pain should be carried out, especially total pain related to cancer, in addition to future research that may include languages other than Portuguese and English.

There is evidence of the need for the development and dissemination of public policies aimed at prioritizing care and support for patients with cancer, so that assistance reaches the population, favoring more effective care for patients who experience pain related to the disease, avoiding overcrowding in reference emergency services.

Finally, this research is not intended to be exhaustive in itself, but encourages new and constant studies to be carried out in the area, considering the constant advancement of scientific knowledge, mainly in the field of health and with a theme that is still a great challenge to science, such as cancer and, more peculiarly, cancer pain as total pain. It also clarifies the need for the development of new technologies that may favor, even more, the survival of cancer patients with a much better quality of life.

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Publication Dates

  • Publication in this collection
    03 July 2023
  • Date of issue
    2023

History

  • Received
    18 July 2020
  • Accepted
    08 Nov 2021
Universidade Estadual de Maringá Avenida Colombo, 5790, CEP: 87020-900, Maringá, PR - Brasil., Tel.: 55 (44) 3011-4502; 55 (44) 3224-9202 - Maringá - PR - Brazil
E-mail: revpsi@uem.br