ORIGINAL RESEARCH

Palliative care for HIV/Aids patients: ethical observance by nurses

Monica Ferreira de Vasconcelos^I; Solange Fátima Geraldo da Costa^II; Patricia Serpa de Souza Batista^III; Maria Emília Limeira Lopes^IV

^I Nurse. Master in Nursing by the Federal University of Paraíba. Member of the Center of Studies and Research in Bioethics. João Pessoa, Paraíba, Brazil. Email: vaskoncelos.vaskoncelos@hotmail.com
^II Nurse. PhD in Nursing, Ribeirão Preto School of Nursing/University of São Paulo. Professor at the Graduate Program in Nursing/Federal University of Paraíba. Member of the Center of Studies and Research in Bioethics. João Pessoa, Paraíba, Brazil. Email: solangefgc@gmail.com
^III Nurse. PhD in Education from the Federal University of Paraíba. Lecturer at the Undergraduate Nursing course and the Graduate Nursing Program. Member of the Center of Studies and Research in Bioethics. João Pessoa, Paraíba, Brazil. Email: patriciaserpa1@gmail.com.br
^IV Nurse. PhD in Education by the Federal University of Rio Grande do Norte. Lecturer at the Undergraduate Nursing course and Graduate Program in Nursing/Federal University of Paraíba. Member of the Center of Studies and Research in Bioethics. João Pessoa, Paraíba, Brazil. Email: mlimeiralopes@yahoo.com.br

DOI: http://dx.doi.org/10.12957/reuerj.2016.26409

ABSTRACT

Objective: to identify the ethical principles observed by nurses providing palliative care for patients with HIV/AIDS. Method: this qualitative, descriptive study was conducted at the infectious disease clinic and the specialized mother-and-child care service of a university hospital. Study participants were eight nurses. Data were collected in October 2012 by semi-structured interview and analyzed using content analysis. Results: the category that emerged from the qualitative analysis was titled: Respect for HIV/AIDS patients' human dignity, confidentiality and privacy. Conclusion: the nurses in the study recognized the importance of ethical principles in providing palliative care for patients with HIV/AIDS. It is hoped that this study will give rise to discussion and thinking on this subject and inform the development of new research.

Keywords: Palliative care; nursing; AIDS; ethics.

INTRODUCTION

Palliative care is defined by the World Health Organization (WHO) as an approach that promotes good quality of life for patients and their families facing diseases that threaten the continuity of life through prevention and relief of suffering. It requires from the multidisciplinary team the early identification, assessment and treatment of pain and other problems of physical, psychosocial and spiritual nature¹.

Palliative care consists of active, comprehensive and individualized attention to patients with diseases outside therapeutic possibilities of cure and has as focus of attention the patients and their families ². Thus, such care is indicated to terminal cancer, non-chronic neoplastic, progressive and infectious diseases, as for example, acquired immunodeficiency syndrome (AIDS).

Nursing professionals should use information and communication as therapeutic tools available when providing care. The actions must act directly on the quality of life of the patient, in order to influence pain relief, provide welfare and interfere with diseases that can generate dependency and discomfort³.

The nurse, as a member of the multidisciplinary team, plays a key role in promoting palliative care for patients with the human immunodeficiency virus/acquired immunodeficiency syndrome (HIV/AIDS) - to minimize the patient's suffering and promote a better quality of life for patients and their families, supported by the philosophy of care and ethical principles that guide the practice of the nursing professional. The diagnosis of this disease causes a great impact on the life of the person living with HIV/Aids and prompts the performance of nursing professionals in different dimensions, with a focus on care as an ethical assumption and appreciation of life⁴.

It is worth noting that the Code of Ethics of Nursing Professionals points out that these professionals should perform their activities with competence, aiming at the promotion of health to the individual in its entirety, using ethical and legal precepts as guiding axis⁵. Therefore, it is imperative that, when assisting the patient with HIV/Aids, the nurse take into account the ethical principles included in the above mentioned Code.

Based on these considerations, this study aimed to investigate the bioethical principles considered by nurses when assisting patients with Aids under palliative care in a university hospital of Paraíba.

LITERATURE REVIEW

Palliative care is driven by techno-scientific competence and is based on principles and knowledge inherent to the various specialties and to the possibilities of clinical and therapeutic interventions in various areas ⁶. In this perspective, care strategies for patients without therapeutic possibilities of cure are developed aiming to effectively control pain and other symptoms caused by the disease, as well as care that includes psychological, social and spiritual dimensions of these patients and their families ⁷. This is, therefore, a form of care based on knowledge acquired in different specialized fields and through the clinical and therapeutic actions based on such knowledge⁸.

Among the principles adopted in palliative care provided to HIV/Aids patients, stand out the affirmation of life and the recognition of death as a natural process; the promotion of relief of pain and other symptoms; the integration of the spiritual and psychological needs in the care of the patient in terminal phase and the implementation of support to the family during the process of the disease, death and mourning. These principles are the same suggested by the WHO for palliative care⁹.

METHODOLOGY

This is a descriptive study with qualitative approach carried out in the clinic of Infectious-Contagious Diseases (ICD), and in the Service Specialized in Maternal and Child assistance (SAE-MI) of the University Hospital Lauro Wanderley (HULW) of the Federal University of Paraíba (UFPB) in the city of João Pessoa-PB. Eight nurses that work in the hospital units, scenarios of this research, participated in the study. Because this is a qualitative research, we used the sampling by accessibility. As inclusion criteria, nurses who were in active in the data collection period and that were for more than one year providing assistance to people with HIV/AIDS were included. In turn, as exclusion criteria, nurses that were on vacation or away from their activities in the period of data collection were excluded.

Data were collected in October 2012 through interviews scheduled with the participants using forms consisting of subjective questions regarding the purpose of the study. Initially, participants were informed about the purpose of the research and its voluntary character. Participants expressed their consent by signing the Informed Consent. The interview took place in an environment of the sector where participants perform their activities, in an atmosphere of cordiality, with an average duration of 20 minutes. To maintain secrecy, a letter and a number was assigned to identify the respondents.

Data collection started after the project was approved by the Research Ethics Committee of the HULW under CAAE nº 04171512.7.0000.5183. The researcher followed the recommendations of Resolution 196/9610 that includes the regulatory guidelines for research involving human beings, in force in the period.

The empirical data acquired through interviews was qualitatively analyzed by the content analysis technique proposed by Bardin¹¹, adhering to the guidelines for implementation of the following stages: pre-analysis, when the documents are selected, the research hypotheses and objectives are formulated in order to operationalize and systematize initial ideas; the exploration of the material, considered the most extensive moment of the study, which may require to perform several readings. This corresponds to the application of the technique on the corpus comprising the text; and treatment of results and interpretations. This is the stage of treatment of results, inference and interpretation.

To ensure the anonymity of respondents, the passages used arising from the collected empirical data were coded by the letter "N" followed by a number following the order of the interviewed nurse, whose sequence contemplated from N1 to N8.

The empirical material obtained allowed the development of the following category: Respect as an ethical principle adopted by nurses to take care of people with HIV/AIDS under palliative care. This category was analyzed by the subcategories: Human dignity, Privacy and Professional confidentiality.

RESULTS AND DISCUSSION

Eight professionals participated in the study. Only one professional has PhD degree and one has Master degree. Most participants had expertise, which is justified by the great difficulty professionals meet to make courses stricto sensu (MS, PhD), as such courses demand a considerable high workload from professionals who are exercising their practical activities.

Human dignity

In the context of palliative care focused on the patient with HIV/Aids, health professionals, especially nurses, should adopt an ethical approach with emphasis on an authentic care without labels or that marginalize the patient, to respect his/her dignity. On this, it is worth mentioning some reports of the interviewed nurses that pointed the importance of respecting the human dignity of patients when promoting palliative care, as shown in the following excerpts:

These statements express that these professionals are concerned about respecting the principle of human dignity, with the promotion of palliative care for HIV/Aids patients, which is inherent to all human beings¹². For being proper of the human condition, it is also regarded as an inalienable attribute, which can not be removed or deleted.

Regarding the respect to the dignity of people with HIV/Aids, disrespect to these people is a violation of their rights. Therefore, assistance to these individuals, based on ethical principles, is an ideal to be reached by health professionals¹³. This ethical conduct is supported by the Code of Ethics of Nursing Professionals^5,14 which includes one of the fundamental principles: respect for life, human dignity and human rights.

In this sense, nurses, since their training, are introduced to ethical issues, which are permeated by a number of values ​​related to respect for others and their dignity, especially with regard to care and the sense of justice and conscience of "done duty"¹⁵.

It is worth noting that dignity is present when an individual is able to control his behavior, the environment and the manner how is treated by others or even the ability to feel valued in relation to others. It also incorporates the respect for privacy¹⁶. When seeking to respect the privacy of people with HIV/Aids, the professional shows respect for their dignity.

Privacy

Privacy comes from the principle of autonomy, which includes intimacy, private life, honor and image of the human being, which assumes that the person is free to decide to whom and how he/she wants to allow his/her body to be exposed to medical procedures, diagnoses and care or what information regarding his/her health conditions should be confidential¹⁷.

Some participants highlighted in their speeches the importance of respecting privacy when implementing palliative care in patients with HIV/Aids, as shown by the following excerpts:

These statements show the ethical stance of nurses enrolled in the study in relation to respect for the privacy of patients with HIV/Aids, in the promotion of palliative care. It is worth mentioning that the privacy of the human being is a principle guaranteed by the Constitution of our country and is supported by the Civil and Penal Code, the Code of Ethics of Health Professionals, and other documents of the legal sphere. The Code of Ethics of Nursing Professionals5⁵ establishes in the Art. 19 that respect for modesty, privacy and intimacy of every human being, even in situations of death and postmortem, is a responsibility and duty of these professionals.

The observance of this article is of fundamental importance to ensure a nursing care that may respect human dignity, and in particular, the dignity of the patient with HIV/Aids under palliative care. In the case of patients with HIV/Aids, their privacy is an aspect considered essential for the promotion of their welfare in hospitals, in order to safeguard their clinical condition and of the other patients. In order to make an effective relationship between the nurse and the person receiving the care possible, a sense of security, empathy and respect for the patient's privacy is necessary. In this sense, the professional must adopt a posture that may transmit reliability¹⁸.

The lack of privacy is a constant concern of HIV patients, especially in the hospital setting, use of the condition of being affected by a disease that arouses prejudice, discrimination and stigma, and because they have to share the same space with other patients, with health team professionals and support services, students and researchers that circulate freely in the hospital¹⁶. The authors comment that, given this reality, patients with HIV/Aids feel the need to have a place that is theirs alone, as a way to get peace of mind, in an attempt to preserve and recover their individuality.

In this sense, when promoting palliative care for patients with HIV/Aids in the hospital, the nurse should, as far as possible, seek a space that favor maintaining the patients' privacy and, therefore, their safety and well-being.

Professional secrecy

When caring for a person with HIV/Aids under palliative care, nurses must consider the ethical and legal principles that permeate their profession, protecting the confidentiality of information. Some professionals stressed the importance of the professional Code of Ethics⁵ to guide their actions in relation to the ethical principle of confidentiality, as shown in these lines:

The Code of Ethics of Nursing Professionals⁵ includes, in chapter II, on professional secrecy, five articles that highlight the rights, responsibilities and duties of nursing professionals. This chapter reflects the large responsibility of the nursing professional on the ethical implications permeating professional secrecy. Therefore, it is imperative that nurses who assist patients with HIV/Aids in the context of palliative care follow the observances mentioned about the preservation of confidentiality.

The individual with HIV/Aids deserves a dignified assistance from health professionals, since he or she is in a stage of life that makes him/her physically and psychologically shaken. Moreover, the patient fears for violation of their infected state^14,16. Apprehension about the discovery of the diagnosis by others can negatively affect their quality of life, for fear that their situation may become public and they may suffer prejudice and stigma. Thus, the support from the team is essential¹⁹.

It is very important that the professional who provides assistance to the patient in a holistic perspective, with a view to improve the quality of the patient's life. Furthermore, he should keep confidentiality on the information that the patient does not want to be revealed. This way, the professional will respect the patient in his dignity and will act ethically in his professional practice.

According to the Code of Medical Ethics²⁰, professional secrecy is considered a right of the patient and only he has the power to decide about the breakup of this secret. This code leaves clear that if the patient express a desire to hide from relatives his health conditions, physicians and all those who are aware of the diagnosis must comply with such a decision, even if the fact is of public knowledge or even if the patient dies²¹. Thus, professional secrecy has become a right and duty to the extent that, as a right of the patient, creates a specific obligation for health professionals²².

It should be noted that, as a rule, one should not reveal a secret considered in all health professional codes of ethics²³. However, there are exceptions, as for example, in the case of obligate reportable diseases. In this case, the disclosure of information is permitted, and legal support is found in the art. 269 ​​of the Penal Code²⁴ that considers as omission when the doctor does not report to the public authority any reportable disease. Although this article only mentions the doctor, it must be respected by all health professionals²⁵. That said, it is clear that these professionals have the obligation to preserve professional secrecy, except in situations where they have legal support.

CONCLUSION

According to the above exposed in the study, participant nurses adopt ethical principles as respect for human dignity, confidentiality and privacy when providing palliative care for patients with HIV/Aids, who are terminally ill.

The observance of these principles is exceedingly relevant in the application of palliative care to patients without possibility of cure during their hospitalization. In the specific case of HIV/Aids patients, besides the experience of limitations imposed by the disease, they have yet to face a stigmatizing disease that produces prejudice and discrimination. Thus, it is up to the health team, especially the nurse, to assist these patients under palliative care, valuing the confidentiality, privacy, and especially the dignity, up to the finitude of their life.

It is hoped that this study may give rise discussions and reflections on this issue and may support the development of new researches that contribute to spreading the knowledge produced about the ethical principles governing the practice of health professionals, particularly nursing professionals, when providind assistance to patients with HIV/Aids under palliative care.

REFERENCES

1.World Health Organization. National cancer control programmes: policies and managerial guidelines. 2th ed. Geneva, 2002.

2.Fernandes NS, Reis MFL, Martins R. Enfermeiros. Organizadores: Saltz E, Juver J. Cuidados paliativos em oncologia. Senac Rio, 2008. 47-51.

3.Nunes MGS, Rodrigues BMRD. Tratamento paliativo: perspectiva da família. Rev enferm UERJ, 2012; 20:338-43.

4.Medeiro APDS, Araújo VS, Moraes MN, Almeida SA, Almeida JN, Dias MD. A experiência da soropositividade para grávidas com HIV/AIDS: preconceito, dor, trauma e sofrimento pela descoberta. Rev enferm UERJ, 2015. 23: 362-7

5.Resolução Conselho Federal de Enfermagem (COFEN) 311/ 2007 Código de Ética dos Profissionais de Enfermagem; 2007.

6.Academia Nacional de Cuidados Paliativos. Manual de cuidados paliativos . 1ª ed. Rio de Janeiro: Diagraphic: 2009.

7.Santos FS. Cuidados Paliativos: Discutindo a vida, a morte e o morrer. São Paulo: Atheneu; 2009.

8.Matsumoto DY. Cuidados Paliativos: conceito, fundamento e princípios. In: Academia Nacional de Cuidados Paliativos. Manual de cuidados paliativos. Diagraphic; 2012; 23-30.

9.Souza TRC, Souza RA. Políticas públicas em cuidados paliativos na assistência às pessoas vivendo com HIV/AIDS. Boletim Epidemiológico Paulista. 2009; 6(70),19-24.

10.Ministério da Saúde (Br). Conselho Nacional de Saúde. Resolução nº 196/96. Decreto 93.9333, de janeiro de 1987. Estabelece critérios sobre pesquisa envolvendo seres humanos. Bioética. 1996; 4(2 Suppl).

11.Bardin L. Análise de conteúdo. Tradução de Luíz Antero Reto. São Paulo: Edições 70; 2011.

12.Andorno R. Human dignity and human rights as a common ground for global ethics. J Med Philosophy. 2009;34 : 223-40.

13.Felismino HP, Costa SFG, Soares MJGO. Direitos e deveres de pessoas com HIV/AIDS no âmbito da saúde: um enfoque bioético. Rev eletr Enf. [Internet journal]. 2008 [cited 2012 Nov]. 10;87-99. Available from: http://www.fen.ufg.br/revista/v10/n1/v10n1a08.htm

14.Medeiros MB, Pereira ER, Silva RMCRA, Siva MA. Dilemas éticos em UTI: contribuições da Teoria dos Valores de Max Scheler. Rev Bras Enferm. 2012; 65.

15.Pupulim JSL, Sawada NO. Percepção de pacientes sobre a privacidade no hospital. Rev Bras Enferm. 2012; 65: 162-71.

16.Cerri A, Roehrs H, Crozeta K, Sarquis LMM, Palu L. Problemas éticos no cuidado ao paciente crítico. Cogitare Enferm. 2011; 16: 463-70.

17.Ferreira F, Izumi LY. Mulheres vivendo com aids e os profissionais do Programa Saúde da Família: revelando o diagnóstico. Rev esc enferm USP [Internet journal]. 2008 [cited 2012 Nov]. 42: 483-9. Available from: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0080-62342008000300010&lng=en&nrm=iso

18. Marta CB, Leite JL, Peregrino AAF, Schutz V, Francisco MTR, Magnago C. Custos da adesão ao tratamento da Síndrome da Imunodeficiência Adquirida: estudo transversal. Rev enferm UERJ, 2014; 22:193-4.

19.Hipolito RL, Oliveira DC, Gom AMT, Costa TL. Representações sociais da qualidade de vida no HIV/AIDS: o papel do tempo de diagnóstico. Rev enferm UERJ, 2014; 22:753-9.

20.Resolução Conselho Federal de Medicina (CFM) 1931/ 2009. Código de Ética dos Profissionais de Medicina; 2010.

21.Sales-Peres SHC, Sales-Peres A, Fantini AM, Freitas FD´AR, Oliveira MA, Silva OP, Chaguri RH. Sigilo profissional e valores éticos . RFO. 2008;13:7-13.

22.Constituição (Br). (1988). Constituição da República Federativa do Brasil. Brasília(DF): Senado, 1988.

23.Przenyczka RA, Lacerda MR, Chamma RC. Sigilo profissional: quando revelar? Enfermagem em Foco 2011; 2:145-8.

24.Codigo Penal (Br). Decreto-lei no 2.848, de 7.12.1940, atualizado e acompanhado de legislacao complementar, também atualizada de sumulas e de indices. 38ª ed. Sao Paulo: Saraiva; 2000.

25.Ferreira FC, Nichiata LYI. Mulheres vivendo com AIDS e os profissionais do Programa Saúde da Família: revelando o diagnóstico. Rev esc Enferm USP. 2013; 42:483-9.