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ONCOLOGY NURSING AND PALLIATIVE CARE IN A REFERENCE INSTITUTION (2005 - 2006)

ENFERMERÍA Y CUIDADOS PALIATIVOS ONCOLÓGICOS EM UNA INSTITUCIÓN DE REFERENCIA (2005 - 2006)

ABSTRACT

Objective:

to analyze the strategies undertaken by nurses at Hospital do Câncer IV to act in accordance with the World Health Organization guidelines.

Method:

a historical and qualitative study carried out at Hospital do Câncer IV, a reference and exclusive Palliative Care unit belonging to the National Cancer Institute. Data collection included written documents and six oral statements and was carried out from August 2020 to August 2022. The study findings were organized and analyzed in accordance with the historical method, which included triangulation of the written and oral sources and the context in which they were produced.

Results:

based on the references of St. Christopher's Hospice and with the support of the Unit's Humanization Group, the strategies undertaken by the nurses and evidenced in this research were as follows: expansion of the Hospital Chaplaincy Project and the Silence Room; investments in graduate courses; professional training and technical-scientific update courses, both at the unit and at other institutions; participation in events as organizers, speakers and listeners; and performance in the Nursing Residency Program.

Conclusion:

nurses undertook effective strategies in the Oncology Nursing field through the consolidation and dissemination of specialized knowledge in Oncology Nursing in Brazil.

DESCRIPTORS:
Palliative care; Nursing history; Oncology nursing; Cancer institutes; Specializations; Nursing

RESUMEN

Objetivo:

analizar las estrategias adoptadas por los enfermeros del Hospital do Câncer IV para actuar en pleno cumplimiento de las directrices propuestas por la Organización Mundial de la Salud.

Método:

estudio histórico y cualitativo realizado en el Hospital do Câncer IV, una unidad de referencia y exclusiva de Cuidados Paliativos del Instituto Nacional del Cáncer. La recolección de datos incluyó documentos escritos y seis testimonios orales y fue realizada de agosto de 2020 a agosto de 2022. Los hallazgos del estudio se organizaron y analizaron de acuerdo con el método histórico, que incluyó triangulación de las fuentes escritas y orales y el contexto en el que fueron producidas.

Resultados:

a partir de las referencias del St. Christopher’s Hospice y con el apoyo del Grupo de Humanización de la Unidad, las estrategias adoptadas por los enfermeros y evidenciadas en este trabajo de investigación fueron las siguientes: ampliación del Proyecto de Capellanía hospitalaria y de la Sala del Silencio; inversiones en cursos de postgrado; capacitación profesional y cursos de actualización técnico-científica, tanto en la unidad como en otras instituciones; participación en eventos, como organizadores, exponentes y oyentes; y trabajo en el Programa de Residencia en Enfermería.

Conclusión:

los enfermeros adoptaron estrategias eficaces en el campo de la Enfermería Oncológica, consolidando y difundiendo el conocimiento especializado en Enfermería Oncológica en Brasil.

DESCRITORES:
Cuidados paliativos; Historia de la enfermería; Enfermería oncológica; Institutos de cáncer; Especializaciones; Enfermería

RESUMO

Objetivo:

analisar as estratégias empreendidas pelos enfermeiros do Hospital do Câncer IV para atuar em conformidade com as diretrizes da Organização Mundial de Saúde.

Método:

estudo histórico e qualitativo realizado no Hospital do Câncer IV, unidade de referência e exclusiva de cuidados paliativos do Instituto Nacional de Câncer. A coleta de dados incluiu documentos escritos e seis depoimentos orais e foi realizada no período de agosto de 2020 a agosto de 2022. Os achados do estudo foram organizados e analisados em conformidade com o método histórico, que comportou a triangulação das fontes escritas, orais e o contexto em que foram produzidas.

Resultados:

a partir das referências do St. Christopher’s hospice e com o apoio do Grupo de Humanização da Unidade, as estratégias empreendidas pelos enfermeiros e evidenciadas nesta pesquisa foram: ampliação do Projeto de Capelania hospitalar e da Sala do Silêncio; investimentos em cursos de pós-graduação; capacitação profissional e cursos de atualização técnico-científica, na unidade e em outras instituições; participação em eventos, como organizadores, palestrantes e ouvintes; e atuação na Residência de Enfermagem.

Conclusão:

os enfermeiros empreenderam eficazes estratégias no campo da enfermagem oncológica, por meio da consolidação e difusão do conhecimento especializado em enfermagem oncológica no Brasil.

DESCRITORES:
Cuidados paliativos; História da enfermagem; Enfermagem oncológica; Institutos de câncer; Especializações; Enfermagem.

INTRODUCTION

Recognized as a human right, Palliative Care is a holistic and patient-centered approach to care in the advanced stages of a disease, providing pain control and reducing physical, psychosocial and spiritual distress, in addition to caring for the family11. Sousa AFD, Santos DGSM, Costeira CRB, Ferreira MM da SR dos S, Lomba M de LL de F. Experiencing parental cancer: A case study with application of Neuman’s Model. Texto Contexto Enferm [Internet]. 2022 [cited 2023 Jun 26];31:e20220201. Available from: Available from: https://doi.org/10.1590/1980-265X-TCE-2022-0201en
https://doi.org/10.1590/1980-265X-TCE-20...
-22. Bradt J, Dileo C, Myers-Coman K, Biondo J. Music interventions for improving psychological and physical outcomes in people with cancer. Cochrane Database Syst Rev [Internet]. 2021 [cited 2023 Jun 26];10:CD006911. Available from: Available from: https://doi.org/10.1002/14651858.CD006911.pub4
https://doi.org/10.1002/14651858.CD00691...
. Therefore, it is important that such care incorporates services that help meet the patients' psychological, social and spiritual needs33. Nascimento AA de A, Azevedo VD de, Silva AF da, Godinho ML, Martins QCS, Santos VEP, et al. Educational technologies used to teach self-management after hematopoietic stem cell transplantation: a scoping review. Texto Contexto Enferm [Internet]. 2023 [cited 2023 Jun 26];32:e20220170. Available from: Available from: https://doi.org/10.1590/1980-265X-TCE-2022-0170en
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-44. Mendes BV, Donato SCT, Silva TL da, Penha RM, Jaman-Mewes P, Salvetti M de G. Spiritual well-being, symptoms and performance of patients under palliative care. Rev Bras Enferm [Internet]. 2023 [cited 2023 Jun 26];76(2):e20220007. Available from: Available from: https://doi.org/10.1590/0034-7167-2022-0007
https://doi.org/10.1590/0034-7167-2022-0...
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In Brazil, from the 1990s onwards important changes related to Oncology Palliative Care stood out in the health field. In compliance with the World Health Organization (WHO), they supported objectives related to promoting quality of life through relief of pain and distress, adoption of comfort measures and a psychosocial, spiritual and physical approach, capable of providing conditions for understanding life finitude, for the sake of improving quality of life33. Nascimento AA de A, Azevedo VD de, Silva AF da, Godinho ML, Martins QCS, Santos VEP, et al. Educational technologies used to teach self-management after hematopoietic stem cell transplantation: a scoping review. Texto Contexto Enferm [Internet]. 2023 [cited 2023 Jun 26];32:e20220170. Available from: Available from: https://doi.org/10.1590/1980-265X-TCE-2022-0170en
https://doi.org/10.1590/1980-265X-TCE-20...
-44. Mendes BV, Donato SCT, Silva TL da, Penha RM, Jaman-Mewes P, Salvetti M de G. Spiritual well-being, symptoms and performance of patients under palliative care. Rev Bras Enferm [Internet]. 2023 [cited 2023 Jun 26];76(2):e20220007. Available from: Available from: https://doi.org/10.1590/0034-7167-2022-0007
https://doi.org/10.1590/0034-7167-2022-0...
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Thus, in view of the growing perspective of demands for such care and the urgency of public policies for cancer control, in the following decades ordinances were instituted to support and encourage the creation and development of Palliative Care, in addition to new international and national publications about the topic. As basis for the development of these public health care measures and in agreement with the WHO, countries should strengthen this service, as it is estimated that, globally, only 14% of the patients who need them actually receive them55. World Health Organization (WHO). National cancer control programmes: Policies and managerial guidelines [Internet]. 2nd ed. Geneva: WHO; 2002 [cited 2023 Apr 20]. Available from: Available from: https://apps.who.int/iris/bitstream/handle/10665/42494/9241545577.pdf?sequence=1&isAllowed=y
https://apps.who.int/iris/bitstream/hand...
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In this scenario, and given the magnitude that cancer assumed worldwide, a new WHO publication in 2002 recommended the implementation of comprehensive Palliative Care programs for all countries, emphasizing the importance of promoting awareness for the development of this assistance profile, prioritizing pain control and relief and guaranteeing oral morphine in all health care settings. It is also reinforced that the countries' health systems should include substantial Palliative Care services, as health would not be universal without them. Integration of these care measures across health programs has also been recorded by the Worldwide Hospice Palliative Care Alliance (WHPCA) as part of Universal Health Coverage55. World Health Organization (WHO). National cancer control programmes: Policies and managerial guidelines [Internet]. 2nd ed. Geneva: WHO; 2002 [cited 2023 Apr 20]. Available from: Available from: https://apps.who.int/iris/bitstream/handle/10665/42494/9241545577.pdf?sequence=1&isAllowed=y
https://apps.who.int/iris/bitstream/hand...
-66. Worldwide Hospice Palliative Care Alliance (WHPCA). Global Atlas of Palliative Care [Internet]. 2nd ed. London: World Health Organization; 2020 [cited 2023 Apr 20]. Available from: Available from: http://www.thewhpca.org/resources/global-atlas-on-end-of-life-care
http://www.thewhpca.org/resources/global...
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In 2004, following the national and international Palliative Care movement, Hospital do Câncer IV (HCIV), the exclusive hospital for Oncology Palliative Care in Brazil, defined its mission: to promote and provide Oncology Palliative Care of the highest quality, with technical skill and humanitarian and a focus on obtaining the best quality of life for its patients and family members77. Instituto Nacional de Câncer José Alencar Gomes da Silva. Cuidados paliativos: Vivências e aplicações práticas do Hospital do Câncer IV. Rio de Janeiro, RJ(BR): INCA; 2021.. That mission aimed at fulfilling the development of projects that directly reflected on care actions, meeting international and national publications and WHO records, in addition to strengthening the unit as a reference on the national scene.

The following year, the Universal Declaration on Bioethics and Human Rights, during a general conference of the United Nations for Education, Science and Culture, included the right to die with autonomy, dignity and quality88. United Nations Educational, Scientific and Cultural Organization Division of Ethics of Science and Technology Social and Human Science (UNESCO). Universal Declaration on Bioethics and Human Rights [Internet]. 2006 [cited 2023 Mar 18]. Available from: Available from: https://unesdoc.unesco.org/ark:/48223/pf0000146180
https://unesdoc.unesco.org/ark:/48223/pf...
. In that same year, reconfiguration of the assistance provided and reorganization of services were initiated at HCIV with a view to the hospital accreditation process with the Joint Commission International (JCI) and advances were made in the implementation of internal projects related to humanization in health, in pursuit of strengthening excellence in Palliative Care and the position of agents in the Oncology field in the country.

Thus, 2005 and 2006 were marked by several investments and by the path towards acting in compliance with international and national publications, and consolidation and dissemination of specialized knowledge of HCVI/INCA nurses.

In parallel with the assessments and activities related to reconfiguration of the assistance provided, the professionals also worked on the execution of projects related to hospital humanization, in accordance with international standards, also having as a reference the St. Christopher’s Hospice. In those years, as provided for in the Ministry of Health's National Humanization Policy, investments were intensified in the INCA Humanization Project and in the advancement of strategies in the humanization axis, with the purpose of ensuring quality of care and life for the patients and family members involved in the care process99. Brasil. Ministério da Saúde. Resenha da luta contra o câncer no Brasil: documentário do Serviço Nacional de Câncer. 2nd ed. Brasília: Ministério da Saúde; 2007 [cited 2021 Nov 3]. Available from: Available from: https://bvsms.saude.gov.br/bvs/publicacoes/resenha_luta_contra_cancer.pdf
https://bvsms.saude.gov.br/bvs/publicaco...
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Thus, the body of evidence on the importance of Palliative Care points to the relevance of the topic in question for the Nursing, Oncology and Nursing History areas since, according to the WHO, the demand for Palliative Care increases at an accelerated pace due to the advances in cancer and other non-communicable diseases, aging of the world population and the recent emergence of COVID-1966. Worldwide Hospice Palliative Care Alliance (WHPCA). Global Atlas of Palliative Care [Internet]. 2nd ed. London: World Health Organization; 2020 [cited 2023 Apr 20]. Available from: Available from: http://www.thewhpca.org/resources/global-atlas-on-end-of-life-care
http://www.thewhpca.org/resources/global...
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Given the above, the current study had the following main question: how did nurses face the challenges of reconfiguring the Palliative Care they provided at Hospital do Câncer IV in the face of the new institutional projects related to the humanization axis? Thus, the objective of this study was to analyze the strategies undertaken by HCIV nurses to act in accordance with the WHO and Ministry of Health guidelines.

METHOD

A historical study with a qualitative approach, based on the perspective of the History of the Present Time. The direct historical sources of the study are written and oral documents. The first ones, located at the National Cancer Institute, consist of a documentary by the National Cancer Service, the Universal Declaration on Bioethics and Human Rights by UNESCO and the Report by the Humanization Group of Hospital do Câncer IV; in turn, the second ones were produced through semi-structured interviews carried out from August 2020 to August 2022. The indirect sources, consisting of scientific articles produced on the theme, substantiated analysis of the findings. The COREQ guidelines were followed.

The time frame has 2005 as its starting point , when Ministry of Health Ordinance No. 2,439/GM of December 8th was published, establishing the National Policy for Oncology Care with a view to Promotion, Prevention, Diagnosis, Treatment, Rehabilitation and Palliative Care to be implemented in all federal units. The final milestone is 2006, the year when INCA's exclusive reference unit for Oncology Palliative Care is inaugurated, a pioneering project in Brazil designed to develop qualified pharmacological and non-pharmacological assistance: the Espaço CuriosAção Day Care Center.

The inclusion criteria for the participants were as follows: professionals who held leadership positions in the study time frame, that is, 2005 and 2006. During this period, eight nurses held managerial positions. Of them, only one did not participate in the study for health reasons. Five participants had their interview excerpts explained here, whose content was directly related to the objective of the article.

An exploratory survey was carried out at the institution-scenario to identify professionals who would meet the inclusion criteria and subsequently indicate other participants within the criteria (Snowball). The participants were approached via email and, some, in person.

The scenario was HCIV, a reference and exclusive Palliative Care unit belonging to the National Cancer Institute (Instituto Nacional de Câncer, INCA) in the city of Rio de Janeiro, state of Rio de Janeiro, Brazil. The locus for the interviews was defined by the participants, they were audio-recorded and were carried out by the first author of the study, duly trained for this activity. They lasted a mean of 236 minutes (approximately 4 hours). The participants were identified with the letter I (Interviewee), followed by the number corresponding to the sequential order of the interviews: I1, I2, I3, I4, I5.

The study findings were organized and analyzed according to the historical method. For the analysis of the documentary corpus, the written sources were cataloged considering the chronological sequence of the facts, followed by external and internal criticism of these documents with a view to guaranteeing their authenticity, legitimacy, veracity and reliability. As for the direct oral sources, the interviews were submitted to transcription and validated by the collaborators. From then on, the documentary corpus was subjected to active document query procedures, which required an independent stance from the official version, allowing better evidence of the historical phenomenon. Reliability of the results was ensured by valuing the documentary set and not the documents in isolation. Analysis of the findings constitutes the erudite and guided synthesis of the historical version herein presented.

It is noted that the study followed the ethical precepts recommended by National Health Council Resolutions 466/12 and 510/16, being approved by the Committee of Ethics in Research with Human Beings from the signatory institution. It should be clarified that, as it is a research study with historical methodology whose participants held managerial positions in a given period of time, in the ICF it was explained that it would not be possible to ensure anonymity of all participants. And in this case, the right to decline the interview would be respected without prejudice of any nature.

RESULTS

The need for action by nurses specialized in Oncology Palliative Care at HCIV, in accordance with international and national literature and the WHO guidelines, determined the development of strategies in favor of humanization in health, from the perspective of a Management Model related to the topic. For the development of these strategies, the Nursing team relied on the support of the HCIV Humanization Group, which, according to the HCIV Humanization Group Report, was led by a nurse and included a social worker and an administrative assistant.

In the elaboration and implementation of these strategies, with regard to reconfiguration of the hospital environment, the nurses relied on the Palliative Care principles prescribed by the WHO and in the Report by the HCIV Humanization Group. In this report, the group emphasizes that humanizing is also seeking talent, and that actions aimed at humanization must be uninterrupted.

In addition to restructuring the sectors with a view to continuing the necessary adjustments to comply with the excellence in care standards, conclusion of the Hospital Chaplaincy Project deserves to be highlighted, which represented the creation of a space for sharing religious faith in facing difficulties, fears, frustrations and disappointments. The purpose of this space was to support the construction of a positive life, valuing the spiritual dimension of hospitalized human beings. One of the interviewees makes favorable remarks about the new space regarding the importance for the patients' well-being and the visibility gained by its uniqueness in the hospital: [...] the Chaplaincy was wonderful within the HCIV [...] a new space where people went to find themselves [...] nobody had a service like that and people wanted to know that [...] people from other units [of the other INCA units] came [...] it was very good for the patients [...] people found themselves spiritually in that place and felt cured in many ailments that the medicine didn't cure [...] it was the opportunity of care without medication [...] (I5).

The aforementioned Project was originally constituted as a space for the action of religious leaders, who are holders of specific skills related to a particular religion. However, the nurses recognized in this space the importance of incorporating it as part of Nursing care, guiding patients about the advantages of being with their religious leaders. Below, a fragment one of the interviews' testimony on the incorporation of Chaplaincy in Nursing care is highlighted: [...] we [nurses] maintained an active search in the morning and afternoon, on the floors of the ward, with an approach to patients and family members to explain the Chaplaincy Project, the possibility of being with a religious leader of their trust and taking advantage of this moment targeted to their spirituality and as part of the treatment, also [...] everything was recorded in the medical chart as part of the Nursing care provided [...] all team members were responsible for publicizing the space, making that patients be cared for in the Chaplaincy[...] (I2).

The Silence Room was also created, in 2004. It was a relaxation room with piped music and comfortable accommodation. The nurses also incorporated use of this room in Nursing care planning, as described in the report below: [...] we took the patients [...] that was a form of care for them [...] we thought of everything we could offer to improve their time there [at HCIV] [...] we didn't just take care of them with medications [...] (I3).

In addition to the benefits of these therapeutic and humanized spaces for patients and their family members or companions, the nurses also used these environments for physical, emotional and mental rest during their workday. This break was a self-care modality that might contribute to the provision of humanized care. The excerpt from the interviewee's testimony evidences this assertion: [...] there was a place to replenish energy and even think about how I was caring for my patients [...] think about how I could improve on the assistance part and offer excellent care, which reflected in the best way in my patient's life [...] (I1).

As a strategy, they also used the investments in the improvement of Lato and Stricto Sensu Graduate courses on the theme of Palliative Care. While enabling them to update their knowledge, this strategy also legitimized their competence for specialized performance. The fragment from one of the interviewees' testimonies evidences the recognition of studies as a chance for performance in Palliative Care at HCIV: [...] I studied a lot [...] I had many colleagues [nurses] who took courses, master's degree, specialization, graduate studies and everything there was in the area [...] Nursing always had a lot of support to learn, take as many courses and specializations as possible that we wanted [...] there were many colleagues who had many degrees and studied a lot [...] (I4).

The nurses also undertook strategies to update themselves through training programs, short courses and workshops, in addition to organizing scientific events at the hospital. The statement below evidences this strategy: [...] there was a lot of investment in class issues [to train the HCIV Nursing professionals] [...], there were a lot of classes on pain, on subcutaneous hydration, on end-of-life care [...] we [nurses] had refresher courses, we always do [participation as students in the courses] [...] Dr. Cláudia [HCIV director at the time] always tried to take [the internal courses] and always gave the opportunity to people who wanted to take a course other than professional work, really [...] very good [...] they were always giving courses [...] (I5).

In addition to providing opportunities for study and research to the Nursing team, the scientific events that were promoted at HCIV also represented an opportunity to publicize nurses' relevance, especially at HCIV, in humanized care for patients undergoing Palliative Care. The statement below evidences the professional recognition by peers, gained by the HCIV nurses and reinforced by invitations to lectures nationwide: [...] we held many events within the [HCIV] unit [...] there was the Nursing Week at INCA and at HCIV, a Bioethics Day, Pain Forum [...] our Nursing Week was very publicized and the nurses had a lot of autonomy since the organization, as speakers at the scientific tables, courses and all that scientific part [...] it was always full [...] there were students, nurses from other hospitals and even from other cities [...] we heard people saying that they planned to participate in the events that took place there [at HCIV] because it was seen as a reference in Palliative Care in Brazil [...] I attended many lectures and gave many others[...] we were called to talk because people wanted to hear about our Palliative Care reality [...] our work was impeccable, full of innovations that no other hospital in the country had [...] (I4).

The nurses' knowledge was also disseminated to graduate training through the Nursing Residency Program at HCIV, in addition to invitations to teach classes at other INCA units. The excerpts below attest to this assertion: [...] I taught Nursing residents here [at HCIV] (I5). [...] I also went to INCA [in the other units] to teach Nursing Residents [...] I was called by the STD [Scientific Technical Division] [...] (I3).

As noted, it was possible to develop strategies that culminated in humanized assistance for patients in need of Palliative Care. In addition, execution of these strategies disseminated nurses' importance in this action field.

DISCUSSION

According to the WHO, the definition of Palliative Care comprises “distress prevention and relief in patients and their families experiencing complications inherent to life-threatening diseases”66. Worldwide Hospice Palliative Care Alliance (WHPCA). Global Atlas of Palliative Care [Internet]. 2nd ed. London: World Health Organization; 2020 [cited 2023 Apr 20]. Available from: Available from: http://www.thewhpca.org/resources/global-atlas-on-end-of-life-care
http://www.thewhpca.org/resources/global...
:1313. Machado M, Petronilho F. O Cuidado confortador dos enfermeiros especialistas em reabilitação - intervenção especializada em cuidados paliativos. Norderstedt: Novas Edições Acadêmicas; 2020.. These complications cause physical, social, emotional and spiritual distress and, therefore, Palliative Care should be based on the provision of humanized and comprehensive assistance33. Nascimento AA de A, Azevedo VD de, Silva AF da, Godinho ML, Martins QCS, Santos VEP, et al. Educational technologies used to teach self-management after hematopoietic stem cell transplantation: a scoping review. Texto Contexto Enferm [Internet]. 2023 [cited 2023 Jun 26];32:e20220170. Available from: Available from: https://doi.org/10.1590/1980-265X-TCE-2022-0170en
https://doi.org/10.1590/1980-265X-TCE-20...
-55. World Health Organization (WHO). National cancer control programmes: Policies and managerial guidelines [Internet]. 2nd ed. Geneva: WHO; 2002 [cited 2023 Apr 20]. Available from: Available from: https://apps.who.int/iris/bitstream/handle/10665/42494/9241545577.pdf?sequence=1&isAllowed=y
https://apps.who.int/iris/bitstream/hand...
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The strategies undertaken by the HCIV nurses related to Palliative Care assistance aimed at complying with the WHO Guidelines, in line with the international and national publications on humanization. The St. Christopher’s Hospice in England also served as a reference for developing these strategies.

They were focused on the unit's humanization axis and on consolidation and dissemination of specialized knowledge, in order to offer a holistic approach and also meet the institutional investments initiated in 20041010. Instituto Nacional de Câncer (INCA). Projeto Ampliado de Capelania Hospitalar do Hospital do Câncer IV. Relatório do Grupo de Humanização do Hospital do Câncer IV. Rio de Janeiro: Instituto Nacional de Câncer; 2005.. Recent studies highlight that nurses' performance plays a key role in providing qualified Palliative Care to patients and their families1111. Camilo BHN, Serafim TC, Salim NR, Andreato ÁM de O, Roveri JR, Misko MD. Communication of bad news in the context of neonatal palliative care: experience of intensivist nurses. Rev Gaúcha Enferm [Internet]. 2022 [cited 2023 Mar 18];43:e20210040. Available from: Available from: https://doi.org/10.1590/1983-1447.2022.20210040
https://doi.org/10.1590/1983-1447.2022.2...
-1313. Machado M, Petronilho F. O Cuidado confortador dos enfermeiros especialistas em reabilitação - intervenção especializada em cuidados paliativos. Norderstedt: Novas Edições Acadêmicas; 2020..

With this, it was sought to bring to light the importance of carrying out expanded assistance - that is, beyond pharmacological measures - and of excellence, aimed at patients with no therapeutic possibility and their families. It is worth noting that comfort measures are developed by nurses who monitor their action throughout the entire life cycle, regardless of the existence of a curative perspective1313. Machado M, Petronilho F. O Cuidado confortador dos enfermeiros especialistas em reabilitação - intervenção especializada em cuidados paliativos. Norderstedt: Novas Edições Acadêmicas; 2020..

One of the strategies in favor of humanized care that encompassed all of the patient's dimensions was the consolidation of the Hospital Chaplaincy Project, in 20051010. Instituto Nacional de Câncer (INCA). Projeto Ampliado de Capelania Hospitalar do Hospital do Câncer IV. Relatório do Grupo de Humanização do Hospital do Câncer IV. Rio de Janeiro: Instituto Nacional de Câncer; 2005.. This was modeled on the existing project at St. Christopher's, by Cicely Saunders. This strategy was important because spirituality plays a fundamental role in care, as it is defined as a self-discovery path and a search for the sacred, meaning and purpose of life. The patients experience the disease, care and death process according to their values, beliefs, culture and experiences, as symptoms in advanced cancer worsen with progression of the disease, exerting impacts on patients and family caregivers1414. Valero-Cantero I, Casals C, Espinar-Toledo M, Barón-López FJ, Martínez-Valero FJ, García-Agua Soler N, et al. Effect of self-chosen music in alleviating the burden on family caregivers of patients with advanced cancer: A randomised controlled trial. Int J Environ Res Public Health [Internet]. 2023 [cited 2023 Mar 16];20(5):4662. Available from: Available from: https://doi.org/10.3390/ijerph20054662
https://doi.org/10.3390/ijerph20054662...
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This project underwent adaptations so that its development could take place in accordance with the HCIV reality. Regarding these adaptations, a specific form was developed and implemented to record the follow-up of patients who used the Chaplaincy, which was incorporated into the medical charts so that the entire team could take ownership of the routine of this service and be able to integrate actions related to it. Records were also made by the religious leaders and volunteers and included into the medical charts, with the aim of documenting the spiritual assistance routine. In this way, they enabled care expansion considering religiousness aspects in the therapeutic course of action.

Regarding the role of Nursing in the Project, regular care actions were implemented in fulfillment of its objectives and spiritual support. As presented, the professionals actively searched for patients and family members in the wards, during all shifts, and standardized a direct approach, documenting the practice in the medical records. The approach relied on regular bed-to-bed visits so that the patients could bear, with courage and hope, their time in the hospital, discovering, in times of pain and convalescence, the opportunity for life, reevaluating it and taking new directions. The spiritual approach to the patients was in line with what was recommended by the WHO when, in 2002, it redefined the concept of Palliative Care, including the spiritual part55. World Health Organization (WHO). National cancer control programmes: Policies and managerial guidelines [Internet]. 2nd ed. Geneva: WHO; 2002 [cited 2023 Apr 20]. Available from: Available from: https://apps.who.int/iris/bitstream/handle/10665/42494/9241545577.pdf?sequence=1&isAllowed=y
https://apps.who.int/iris/bitstream/hand...
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The Silence Room, as one of the consolidated projects was named, due to its pleasant and welcoming environment, also contributed to promoting holistic care by the Nursing team, valuing non-pharmacological measures to relieve pain and other symptoms. The nurses' reports emphasized the patients' significant improvements, both from a physical and emotional point of view. Such improvements eased adequate communication between nurse, patient and family, the basis for clarifying and accepting the diagnosis, in addition to allowing care to be planned in a way that met each patient's needs and, thus, being able to accept the health-disease process, seeking body and soul well-being1515. Alcântara EH, Almeida VL, Nascimento MG, Andrade MBT, Dázio EMR, Resck ZMR. Perception of nursing staff professionals about the care of patients in palliative care. Rev Enferm Cent O Min [Internet]. 2018 [cited 2023 Jan 20];8:e2673. Available from: Available from: http://doi.org/10.19175/recom.v8i0.2673
http://doi.org/10.19175/recom.v8i0.2673...
.

Thus, the actions implemented aiming at holistic and humanized care (of a physical, psychosocial and spiritual nature) were adequate and effective for the consolidation of specialized Nursing knowledge in accordance with international and national scientific publications. The literature reinforces that it is important to provide affordable, acceptable, good quality and cost-effective Palliative Nursing Care to everyone who needs it, whenever necessary1616. Mathew JM, Thelly AS, Antony L. Empowering nurses to meet challenges and lead palliative care for achieving triple billion targets. Indian J Palliat Care [Internet]. 2022 [cited 2023 Jun 28];28(2):174-9. Available from: Available from: http://doi.org/10.25259/IJPC_56_2021
http://doi.org/10.25259/IJPC_56_2021...
.

Some participants considered the development of humanized care actions, those that met the WHO recommendations. The following can be mentioned among them: those that were directly reflected in the care provided, such as offering a welcoming and comfortable environment; contact with music; a pleasant and relaxing environment with a water source; and availability of a notebook for each patient to record their thoughts, pains and feelings. Music can benefit patients in managing pain, reducing the anxiety and depression levels and increasing spiritual awareness, as well as providing a general feeling of happiness, hope and love, meeting psychosocial needs and improving quality of life1717. Gallagher LM, Lagman R, Rybicki L. Outcomes of music therapy interventions on symptom management in palliative medicine patients. Am J of Hosp Palliat Med [Internet]. 2018 [cited 2023 Jan 20];35(2):250-7 Available from: Available from: https://doi.org/10.1177/1049909117696723
https://doi.org/10.1177/1049909117696723...
-1818. Peng CS, Baxter K, Lally KM. Music intervention as a tool to improve the patient experience in palliative care. Am J Hosp Palliat Care [Internet]. 2019 [cited 2023 Jan 20];36(1):45-9. Available from: Available from: https://doi.org/10.1177/1049909118788643
https://doi.org/10.1177/1049909118788643...
. Caregivers also go through stress and exhaustion situations, and music is also used to alleviate their concerns1919. Chan LM, Ng SJ. Prevalence and correlates of caregiver anxiety in family caregivers of patients with advanced cancer: A cross-sectional study in a palliative care unit in Hong Kong. East Asian Arch Psychiatry [Internet]. 2022 [cited 2023 Jan 20];32:27-33. Available from: Available from: https://doi.org/10.12809/eaap2171
https://doi.org/10.12809/eaap2171...
.

The nurses' significant and leading participation in implementation and development of the projects allowed the team to acquire specialized knowledge on the topic, granting it professional recognition in the Oncology field. They also acted as disseminators of specialized knowledge in other institutions across the country, strengthening themselves as a national reference.

In this context, nurses' involvement was through actions that encouraged them to consolidate and disseminate technical and scientific knowledge, through investments in Lato and Stricto Sensu Graduate courses. These strategies already met what would be advocated by the WHO about the need for education in Palliative Care at three training levels: basic, for all health professionals; intermediate, for those who routinely work with patients suffering from life-threatening diseases; and specialized, for professionals working with patients who manifest more complex symptoms, acting in management, or for those who taught these care measures and those devoted to scientific research55. World Health Organization (WHO). National cancer control programmes: Policies and managerial guidelines [Internet]. 2nd ed. Geneva: WHO; 2002 [cited 2023 Apr 20]. Available from: Available from: https://apps.who.int/iris/bitstream/handle/10665/42494/9241545577.pdf?sequence=1&isAllowed=y
https://apps.who.int/iris/bitstream/hand...
. The WHPCA resolution also stipulated Palliative Care education as a requirement66. Worldwide Hospice Palliative Care Alliance (WHPCA). Global Atlas of Palliative Care [Internet]. 2nd ed. London: World Health Organization; 2020 [cited 2023 Apr 20]. Available from: Available from: http://www.thewhpca.org/resources/global-atlas-on-end-of-life-care
http://www.thewhpca.org/resources/global...
.

Some participants also narrated their participation in courses, as listeners and representatives of HCIV Nursing, both at the Institute and at external institutions. Organization, leadership and participation in scientific events were strategies that contributed to recognition of the Nursing competence at HCIV/INCA, a product of investment in the materialization of specialized professional knowledge. This provided authority to define the rules of the game, through norms and participation in the main processes in the institution and, on the other hand, to strengthen the strategies to disseminate the specialized knowledge of this group of agents in external spaces.

Such investments made it possible to sustain their positions of power in the unit and at the national level, that is, institutional recognition, aimed at highly qualified assistance for HCIV and other Oncology units in Brazil. In this sense, it is considered that nurses' knowledge contributes to the holistic care of patients with chronic diseases and to end-of-life Palliative Care, as well as for their families, as having adequate information and skills is essential when dealing with the dying process2020. Soikkeli-Jalonen A, Stolt M, Hupli M, Lemetti T, Kennedy C, Kydd A, et al. Instruments for assessing Nurses’ palliative care knowledge and skills in specialised care setting: An integrative review. J Clin Nurs [Internet]. 2020 [cited 2023 Mar 20];29(5-6):736-57. Available from: Available from: https://doi.org/10.1111/jocn.15146
https://doi.org/10.1111/jocn.15146...
-2121. Hökkä M, Martins Pereira S, Pölkki T, Kyngäs H, Hernández-Marrero P. Nursing competencies across different levels of palliative care provision: A systematic integrative review with thematic synthesis. Palliative Med [Internet]. 2020 [cited 2023 Mar 20];34(7):851-70. Available from: Available from: https://doi.org/10.1177/0269216320918798
https://doi.org/10.1177/0269216320918798...
. In this space, the nurses ratified their importance for the implementation of humanized care for patients with Palliative Care needs, offering support and expanded assistance to cope with the disease.

The full evidence regarding strengthening of the unit as a national reference is based on the measures, initiated in 2004, to reach the goals related to HCIV planning in the hospital accreditation movement through the international certification of excellence. In this regard, in 2005, the Nursing Division head, Fátima Vinhas, in partnership with the nurses and with the support of the then director, physician Cláudia, prepared a plan for Nursing to meet these goals1010. Instituto Nacional de Câncer (INCA). Projeto Ampliado de Capelania Hospitalar do Hospital do Câncer IV. Relatório do Grupo de Humanização do Hospital do Câncer IV. Rio de Janeiro: Instituto Nacional de Câncer; 2005.,2222. Paiva CF, Santos TCF, Aperibense PGG de S, Martins G da CS, Ennes LD, de Almeida Filho AJ. Historical aspects in pain management in palliative care in an oncological reference unit. Rev Bras Enferm [Internet]. 2021 [cited 2023 Mar 20];74(5):e20200761. Available from: Available from: https://doi.org/10.1590/0034-7167-2020-0761
https://doi.org/10.1590/0034-7167-2020-0...
.

The presence of nurses in institutionalized spaces of knowledge in Oncology, giving lectures at external scientific events, symbolized recognition of their competence by their peers and by other professionals who held positions of power, responsible for accepting the invitation. In addition, the scientific discussions at these events allowed the professionals present, even those who did not work in Palliative Care, to incorporate diverse knowledge on the topic, as it is essential that any nurse be taught at least a basic level of Palliative Care, for this knowledge will support the work with people susceptible to receiving this type of attention, regardless of the area in which they develop their professional activity2323. Hökkä M, Melender HL, Lehto JT, Kaakinen P. Palliative nursing competencies required for different levels of palliative care provision: a qualitative analysis of health care professionals’ perspectives. J Palliat Med [Internet]. 2021 [cited 2023 Mar 20];24(10):1516-24. Available from: Available from: https://doi.org/10.1089/jpm.2020.0632
https://doi.org/10.1089/jpm.2020.0632...
.

Another scenario described by the participants for knowledge dissemination was the Residency/Specialization Program in Nursing, linked to INCA, which had the social space of HCIV as a scenario in one of the modules. In this movement, the dissemination of scientific knowledge by Nursing at HCIV within the unit itself included, in addition to teaching participation, the provision of classes for resident nurses at HCIV and also at other INCA hospital units. Thus, the possibilities for action were shaped by the position held by nurses in internal and external spaces. Seamless cooperation between Palliative Care services and institutions is recommended to ensure that undergraduate and graduate education is based on an ongoing assessment of competency requirements in the Palliative Care field2424. Suikkala A, Tohmola A, Rahko EK, Hökkä M. Future palliative competence needs - a qualitative study of physicians' and registered nurses' views. BMC Med Educ [Internet]. 2021 [cited 2023 May 12];21(1):585. Available from: Available from: https://doi.org/10.1186/s12909-021-02949-5
https://doi.org/10.1186/s12909-021-02949...
.

This was one of the important moments in strengthening the professional space, whose evidence reveals the recognition of specialized knowledge and the importance of sharing it nationally, in order to also support other institutions to act in accordance with the WHO recommendations and sustain a holistic view of the assistance provided at different health care levels.

In this scientific space, both internal and external to HCIV/INCA, in addition to aggregating and disseminating knowledge in the area, the HCIV nurses established a network with other professionals, also in an important position and/or undergoing training, which gave them the opportunity to expand their professional relationships, as the existence of a relationships network is the product of introducing and maintaining efforts required to produce and reproduce relevant and lasting relationships, able to provide material or symbolic profits2525. Bourdieu P, Nogueira MA, Catani A, organizers. Escritos de Educação. Petrópolis, RJ(BR): Ed. Vozes; 2008.. In addition, a number of studies point out that the health team is an important factor for increasing people's sense of human dignity in Palliative Care, which favors the appreciation of direct and the indirect care measures that are important for these individuals2626. Prado RT, Leite JL, Silva IR, Silva LJ, Castro EAB. The process of dying/death: Intervening conditions to the nursing care management. Rev Bras Enferm [Internet]. 2018 [cited 2023 May 12];71(4):2005-13. Available from: Available from: https://doi.org/10.1590/0034-7167-2017-0173
https://doi.org/10.1590/0034-7167-2017-0...
-2929. Cardoso MFPT, Martins MMFP da S, Trindade L de L. Attitudes in front of death: nurses’ views in the hospital environment. Texto Contexto Enferm [Internet]. 2020 [cited 2023 Jun 26];29:e20190204. Available from: Available from: https://doi.org/10.1590/1980-265X-TCE-2019-0204
https://doi.org/10.1590/1980-265X-TCE-20...
.

2005 and 2006 saw countless changes in Nursing care and in the reality of the unit, which adapted to the molds of an international hospice, with this adaptation process as a factor that was very much highlighted by the participants. The diverse action possibilities of this group of nurses configured the stance built through action strategies of the same group in the HCIV/INCA internal and external spaces.

Considering the current population aging scenario and the advance of chronic non-communicable diseases, as well as oncological ones, and the importance of Palliative Care55. World Health Organization (WHO). National cancer control programmes: Policies and managerial guidelines [Internet]. 2nd ed. Geneva: WHO; 2002 [cited 2023 Apr 20]. Available from: Available from: https://apps.who.int/iris/bitstream/handle/10665/42494/9241545577.pdf?sequence=1&isAllowed=y
https://apps.who.int/iris/bitstream/hand...
, the current research contributes to understanding the path of nurses' performance in this assistance modality, highlighting their leading role linked to the strategies for the dissemination and consolidation of their specialized knowledge to provide good quality assistance with a focus on humanization.

In this sense, this study makes it possible to invest in other studies related to Oncology Palliative Care in different historical contexts, as there is an estimate that the need for end-of-life Palliative Care at the end of life will double by 2060. Therefore, health management is evidenced as an important challenge due to the high demand for this population. Brazil will be the sixth country in the world in number of aged people, reaching 32 million3030. Brasil. Ministério da Saúde. Estatuto do Idoso. 3rd ed. 2nd reimp. Brasília, DF(BR): Ministério da Saúde; 2013 [cited 2021 Nov 3]. Available from: Available from: http://bvsms.saude.gov.br/bvs/publicacoes/estatuto_idoso_3edicao.pdf
http://bvsms.saude.gov.br/bvs/publicacoe...
.

As a study limitation, the possibility should be considered that other historical sources are located in other research studies, despite the fact that these sources were collected in an expanded, systematic and judicious way in this research, as foreseen by the historical method.

CONCLUSION

The study evidenced nurses' role in the implementation and consolidation of projects at HCIV since, in addition to sustaining Nursing professionals as spokespersons for the authorized discourse on Palliative Care, they absolutely influenced the context in which the unit was established as a reference in national scope for Oncology Palliative Care.

HCIV constituted a fruitful scenario for the development of strategies by nurses, for the consolidation and dissemination of specialized knowledge. For the unit to establish itself as a national leader and act in compliance with international and national scientific publications and the WHO guidelines, it was necessary for Nursing to strengthen itself to sustain its position in the field of national Palliative Care, which happened through the strategies developed.

It is concluded that, at HCIV, the nurses undertook effective strategies to face the challenges that were imposed in favor of Palliative Nursing Care, so as to act in compliance with international and national publications and the WHO guidelines. This culminated in reinforcement of them holding their positions in this space, transforming it and contributing to hospital humanization, in accordance with international standards.

It is relevant to highlight that the nurses' efforts and authority allowed consolidating the holistic patient-centered approach, with a view to Oncology Palliative Care in the advanced stage of the disease, providing them with control of pain, physical, psychosocial and spiritual distress and, in this way, meeting the humanization axis, necessary for the accreditation of HCIV at the Joint Commission International. In this sense, HCIV represents an important scenario for the development and application of specialized knowledge in the care, teaching and scientific production nurses of the unit as a reference in the health scenario in Brazil.

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NOTES

  • ORIGIN OF THE ARTICLE

    Extracted from the thesis - “Hospital do Câncer IV as a locus for updating nurses’ scientific capital in Oncology Palliative Care in Brazil (2005-2006)”, presented at the Graduate Program in Nursing of the Anna Nery Nursing School, Universidade Federal do Rio de Janeiro, in 2023.
  • FUNDING INFORMATION

    This paper was conducted with the support of Coordenação de Aperfeiçoamento de Pessoal de Nível Superior (CAPES) - Brazil - Funding Code 001.
  • APPROVAL OF ETHICS COMMITTEE IN RESEARCH

    Approved by the Ethics Committee in Research of the Anna Nery Nursing School and the São Francisco de Assis Teaching Hospital belonging to Universidade Federal do Rio de Janeiro: opinion No.4,141,019 and Certificate of Presentation for Ethical Appraisal No. 33612720.2.0000.5238.

Edited by

EDITORS

Associated Editors: José Luís Guedes dos Santos, Ana Izabel Jatobá de Souza. Editor-in-chief: Elisiane Lorenzini

Publication Dates

  • Publication in this collection
    17 Nov 2023
  • Date of issue
    2023

History

  • Received
    15 May 2023
  • Accepted
    31 July 2023
Universidade Federal de Santa Catarina, Programa de Pós Graduação em Enfermagem Campus Universitário Trindade, 88040-970 Florianópolis - Santa Catarina - Brasil, Tel.: (55 48) 3721-4915 / (55 48) 3721-9043 - Florianópolis - SC - Brazil
E-mail: textoecontexto@contato.ufsc.br