RESEARCH ARTICLES

 

Communication of difficult news to patients without possibilities of healing and family members: the role of the nurse

 

Cristiani Garrido de AndradeI; Solange Fátima Geraldo da CostaII; Maria Emília Limeira LopesIII; Regina Célia de OliveiraIV; Maria Miriam Lima da NóbregaV; Fátima Maria da Silva AbrãoVI

INurse. Speech therapist. Master in Nursing. Member and Researcher at the Center for Studies and Research in Bioethics. Professor in Nursing, Faculty of Medical Sciences of Paraíba Federal University of Paraíba, João Pessoa. Paraíba, Brasil. E-mail: cristiani_garrido@hotmail.com.
IINurse. PhD in Nursing by the University of São Paulo. Coordinator of the Center for Studies and Research in Bioethics. Federal University of Paraíba. João Pessoa, Paraíba, Brasil. E-mail: solangefgc@gmail.com.
IIINurse. PhD in Education by the Federal University of Rio Grande do Norte. Professor for Graduate and Postgraduate Nursing, Federal University of Paraíba. João Pessoa, Paraíba, Brasil. E-mail: mlimeiralopes@yahoo.com.br.
IVPhD in Nursing by the University of São Paulo. Professor of the Associate Postgraduate Program in Nursing, University of Pernambuco. Recife, Pernambuco, Brasil. E-mail: reginac_oliveira@terra.com.br.
VPhD in Nursing. Professor of the Postgraduate Program in Nursing, Federal University of Paraíba. João Pessoa, Paraíba, Brasil. E-mail: miriamnobrega@uol.com.br.
VINurse. PhD in Nursing by the University of São Paulo. Coordinator of the Associate Postgraduate Program in Nursing, University of Pernambuco and Paraíba State University.  Recife, Pernambuco, Brasil. E-mail: fatimabrao@terra.com.br.

DOI: http://dx.doi.org/10.12957/reuerj.2014.5748

 


ABSTRACT: this study aimed to investigate the role of the nurse in relation to the communication of difficult news to patients without healing possibilities and their families. This is a descriptive study, with qualitative approach, attended by 28 care nurses acting in inpatient units of a public hospital in the city of João Pessoa - PB, from August to October 2012.  Data collection was performed using a form. Data were analyzed using the content analysis technique. From the analysis of the empirical material, two themes emerged: communication of difficult news to patients and their families: participation of nurses; and strategies adopted by nurses to facilitate communication of difficult news for the patient and his family. It is concluded that the nurse plays an essential role in communicating bad news to patients without therapeutic possibilities of healing and their family.

Keywords: Communication; terminally ill patient; nursing; health.


 

INTRODUCTION

In the context of unique technical and scientific developments in the history of the health sciences, in which it is believed that almost all problems can be determined with the use of technological devices, terminal illness and death remain as limits to humans. Thus, patients, families and even the professionals in Health avoid talking about the subject1.

This creates a condition known as conspiracy or covenant of silence. This condition is manifested with the transmission of ambivalent messages, in which the optimistic verbal discourse, focused on varied and superficial issues is contradicted by nonverbal language that expresses vividly the seriousness of the situation2.

Researches3-5 stand that receiving honest, clear and compassionate information is a universal yearning of patients with advanced-stage disease. However, they also have the right not to know. Thus, their will should be respected, and the team can identify a family member or someone close who receives bad news and is the interlocutor of messages2.

The difficult news or bad news is defined as any information that encompasses drastic change in the future perspective of the person in a negative sense. It is one that negatively alters the patient's expectation regarding his future, and his answer will depend, among other things, on his hope for the future, which is individual and influenced by the psychosocial context6.

It is important to mention that the communication of difficult news can be of three types: the communication of the diagnosis of advanced disease with a poor prognosis; communication and attention to serious sequelae of treatments, such as mutilation, loss of functions and their consequences in the loss of quality of life; communication of resource depletion for current healing and preparation for exclusive palliative care7,8.

It is noteworthy that during treatment with intent to cure for the terminal phase, difficult communication situations emerge. Among them, we can mention recurrences of the disease after treatment; the consequences of disabling and mutilating surgeries (for work, for relationships life, to sexuality, for autonomy in daily life); toxicity and, several times, the ineffectiveness of chemotherapy treatments and the adverse effects of radiotherapy8.

It is worth emphasizing that the disclosure of the diagnosis to the patient is duty of the physician and it is scheduled in his code of professional ethics, but all health professionals should be aware of how to do so, especially nurses, since these professionals remain longer beside the bed of the patient. Moreover, lack of communication is only tolerated in pediatric cases or when physical or psychological conditions do not allow patients to understand their disease. In these events, diagnosis should be communicated to the family or to the legal representative, for it is a conduct of exception, and the professional must learn to recognize to which patients the truth should be omitted9.

It is noteworthy that, in general, nurses are worried if the patient/family could bear to listen to the information about a diagnosis. At another point, they remain in internal conflict, between telling or not, along with the doctor, bad news for the patient and/or his families. So they have to wonder about the way they will share that information with the people involved and learn about what the patient really knows about his diagnosis and prognosis10.

Given the above, considering the relevance of this topic in the area and the smallest quantity of studies on communication of difficult news for patients without healing possibilities, the interest in developing this study emerged, aiming to investigate the role of the nurse regarding communication of difficult news to patients without healing possibilities and their families.

 

LITERATURE REVIEW

The concern with the communication of bad news was revealed, since the creation of the first code of medical ethics in the United States in 1847 and, until today, its content and its form are discussed. Therefore, there are ongoing debates among professionals in Health as the form, and the appropriate time to break the news of the diagnosis to the patient and his family, especially the patient with no possibility of cure. Thus, it is a delicate and difficult action to be administered11.

The literature states that the communication of difficult news is one of the most difficult tasks of the health professional. This is because they learn, in University, to save lives and seek health, and not to deal with circumstances of loss of health, vitality, hope and death2.

The moments of communication of difficult news cause disruption both to the person who receives it, and to the person who conveys them and it provokes in professionals, especially nurses, and in patients fears, anxiety, feelings of worthlessness, discomfort and disorientation. These aspects often lead to escape mechanisms in professional and due to fear of being verbally attacked, they commonly communicate in a less careful and less friendly way12.

In this context, perception and interpretation of non-verbal signals of the patient are essential, and will consent to identify the emotional state of the patient and show to the professional how far to go at that time. When communicating difficult news, it is essential that professional shows attention, empathy and caring in their behavior and nonverbal signals. The facial expression, eye contact, proper distance and touch the hands, arms or shoulders help to show empathy and provide support and comfort². At that moment, the assistance of the nurse is paramount, since their care is grounded in a humanistic attitude, which includes caring, concern, diligence, zeal, responsibility, concern and involvement with the patient.

 

METHODOLOGY

This is a descriptive, qualitative research. The scenario of research consisted in inpatient units of a public hospital in the city of João Pessoa - PB, considered a reference in that state.

Research participants were 28 clinical nurses of the institution selected for the study, providing targeted care to patients with no possibility of cure, randomly selected by the following criteria: professional who had been acting for at least one year in the unit; who were in professional activity during the period of data collection; and availability and interest to participate in the study, confirming their agreement with the signing of the informed consent form.

Data collection was performed through interviewers during the period from August to October 2012, and it was initiated only after approval of the research project by the Research Ethics Committee of the University Hospital Lauro Wanderley, of Federal University of Paraíba, as CAAE No. 02685412.2.0000.5183. Thus, it is notable that the study was conducted pursuant to Resolution No. 196/9613 of the National Health Council, which provides standards and regulatory guidelines for research with human beings.

In order to obtain the empirical data, a form with relevant questions related to the objectives proposed for the research was used: Have you had the opportunity to report bad news to terminally ill patients and/or to their families? Justify. How do you think the nursing professional must address the bad news to the patient in terminal illness and their families? The nurses in the hospital were contacted at the hospital facilities and completed forms there, in appropriate place and time for professionals.

We applied the technique of data saturation to limit the quota to be searched. From the 29th interview, the information started to repeat, consequently terminating the collection of data with 28 subjects.

It is worth mentioning that, to maintain the anonymity of nurses enrolled in the study, the statements derived from the interviews were identified by the acronym “N”, followed by numbers from 1 to 28. Example: N2, and so forth.

Data obtained through the proposed instruments were summarized qualitatively through content analysis proposed by Bardin14, defined as a set of techniques for analyzing communications aiming to obtain, by systematic and objective procedures to describe the content of the messages, indicators that allow the inference of knowledge concerning the conditions of production/reception of these messages.

In this study, this technique was carried out through the following steps: pre-analysis, which was to organize the data collected through the forms; material exploration, identifying the relevant points of each issue, with their convergent points, according to their common focus to then group them into categories and treat the results, at which were discussed inferences and interpretations14.

From the analysis, the following categories emerged: communication of difficult news to patients and their families: participation of nurses; and strategies adopted by nurses to facilitate communication of difficult news to patients and their families.

 

RESULTS AND DISCUSSION

This study contemplates two thematic categories, whose content reveals how nurses use communication to address bad news to patients without healing possibilities and their family.

Communicating difficult news to patients and their families ...

With regard to this category, participants recovered that it is the duty of the physician to inform of bad news, such as the diagnosis of an incurable disease, but they alluded that despite not being the responsibility of the nurse the communication of diagnosis, this professional plays an important role in comprehensive care in developing strategies that help the patient to understand the current situation and adhere to treatment. The following statements confirm this assertion:

These news often are given by the doctors, but we always follow the moments after this news, especially with family (N18)

Gradually, with the support of other professionals [psychologists, physicians], we explain the bad news. (N15)

[...] in nursing consultation, I end up addressing the situation, the whole process of treatment because the doctor talks about it, but the nursing staff stays with the worst part, because we remain longer with the patient. (N27)

From these statements, it appears that there is a greater responsibility for the nurse, in the monitoring of the patient and family after the communication of difficult news, because this professional stays longer with patients.

Thus, the fact that nurses have more contact with patients in the daily treatment and share the sufferings, fears and anxieties of the patient, makes him able to identify and approach the needs felt and experienced by those under their responsibility , more than any other professional. The link established between the nurse and the patient at the time of hard news is essential to help the patient to face his new reality. It is when the existence or lack of a bond arises between them9.

Thus, the role played by the nurse in the production of care includes the duty to collaborate with the patient and his family, clarify them and be aware of how and when they should inform a difficult news15. Regarding the giving or not a hard news, it is notable that, thinking that it might increase the suffering and depression of the patient, some nurses enrolled in the study avoid talking about terminal illness and death to preserve the patient and his family, which in order to protect their loved ones, also escapes the issue, as shown by the following excerpts:

I do not think the patient should receive bad news. The patient is already going through a difficult time in his life, a time of illness, which emerges suffering and doubts about his medical condition, receiving bad news would only increase this, worsening their bio psychosocial and spiritual state. (N16)

I am not in favor of conveying bad news, [...] there are certain moments that bad news causes the deterioration of the patient's life. (N17)

[...] If a patient has no prognosis, in his last days, there no point in providing him bad news, because depending on the news and how it is given, it can speed up his end and cause sadness and or depression. (N 28)

The highlighted reports reveal that these professionals prefer to hide the truth than to communicate difficult news to patients. Thus16, the establishment of silence reveals the difficulties of man against the inexorable character of death. Interspersed with silence we find concealment of truth, which frequently accompanies liar information. This pattern of communication, supported by society, when at the approach of death, seems to be a strong feature of modernity.

An important fact to report is that, in the late nineteenth century, the Code of Medical Ethics of the USA encouraged the concealment of the truth to the patient, revealing that it is a sacred duty to guard carefully about this, avoid all things that tend to discourage the patient and to depress his spirit. A century later, the guidance is that the doctor must deal honestly with patients and colleagues. The patient has the right to know his medical past and present state, and be free of any mistaken beliefs about his condition17. Thus, we highlight the importance of the revelation of the truth.

It is noteworthy that, despite the changes that have occurred, the widespread belief that disclosure to the patient of his incurable illness can trigger a depressive process and impair adherence to treatment is still a strong justification for concealing the truth:

[...] these news can lead him to depression and/or correlated diseases, further accelerating the terminally. (N18)

Omission of information and even lie can occur in an attempt to minimize the suffering of the patient and, possibly, professionals and family, but there are consequences that will interfere in the quality of professional-patient relationship, especially in how the patient will conduct his treatment and the final moments of his life16.

Currently, there is a constant concern about the duty to inform, provided that the information does not cause damage. In this case, the communication must be made to his legal guardian. These recommendations can be considered dubious and generate conflicts and insecurities, taking into account the difficult identification and prediction of what may or may not cause psychological and emotional damage to the patient.

Some nurses in the study reported that fact, as shown by the following excerpts from the testimony:

[...] I think we should communicate difficult news, depending on how the patient presents confrontation for this moment. (N14)

[...] depending on his condition, we must communicate, because the patient even in terminal phase has the right to know the truth, [...] this truth dignifies his person as being able and within the context of participation of care. (N13)

The news must be reported primarily to the family of a terminally ill patient, who should be aware of the situation and the possibility of death. (N20)

It is evident in these reports that nurses consider necessary communication of bad news to the patient and family. A survey conducted in Brazil with 363 patients identified that over 90% of respondents wish to be informed about their health conditions, including in case of serious illness4. Another European study, performed with 128 individuals who were diagnosed with incurable cancer, revealed that many of these patients would like to be informed about treatment, side effects, physical symptoms options and how and where to find help and advice about diet therapy, psychosocial and complementary care5.

In a systematic review18 about the bad news to patients with cancer, it was revealed that younger patients, females and those with higher education propagate greater desire to receive more detailed information and agree with the possibility of receiving emotional support from a professional. In this research, it was noted also that demographic factors influenced the choice of how to receive the bad news, as in the case of Asians, who expressed more interest in receiving the bad news in person to the detriment of the Westerns.

It is important to remember that although many patients want to know about their health condition, they also have the right of not wanting to receive information about this 2. Thus, their desire needs to be respected. Therefore it is necessary to identify a family member or someone close who can receive the information, to be the interlocutor of messages.

Therefore, it is emphasized that the communication of a hard news is a common practice for nurses who work with patients with no possibility of healing, including the complexity and interrelation between the human being and his family, since the moment of communication encompass the uniqueness of each being.

Strategies adopted by nurses to facilitate communication ...

The following speeches mention some strategies used by nurses to communicate bad news to the patient and/or his family:

It is up to the professional to use strategies of communication and interaction to know what the patient's wish is and if he wants to know the truth, the nurse should have the ability to do it (knowing that this is a complex skill) without causing further psychological and physical damage to patient/family binomial. (N3)

In a quiet, safe way, but showing feelings about the situation being faced. Showing solidarity with the patient and family, embracing this patient. (N1)

Initially listening to the patient and family, investigating what patients would like to know, observing and understanding reactions that give them greater certainty about their decision to talk or not at that moment. (N3)

Respecting the right time, the right moment, the right location, the right words and always acting empathically. (N13)

These statements express that nurses consider the communication of bad news as a complex task that requires them various skills, such as: attention, empathy and caring, and non-verbal signals. About these skills2, it is highlighted that the facial expression, eye contact, proper distance and touching hands, arms or shoulders help to empathize and offer support and comfort. Therefore, the patient needs to feel that, no matter how bad his situation is, there is someone who will not abandon him, whom he can trust and who will take care of him.

Therefore, it is important that the nurse understand the patient with a neutral expression and subsequently inform the bad news in a clear and straightforward manner, using a gentle tone, voice paused and frank language. He must be sure that the patient has understood the message clearly and send it through a simple language, with caution, in technical terms19.

As a strategy to facilitate effective communication, we highlight the SPIKES protocol, which establishes tactics for effective communication when one needs to deliver bad news, such as: to be careful with the environment in which the diagnosis will be issued; to realize the emotional and cognitive conditions in which the patient lies; to have a frank conversation without illusions and false expectations; to recognize the emotions and feelings of patients and synthesize all that was said20. It is observed that some of the tactics laid down by this protocol were referred to in some of the reports of study participants:

The approach should be clear and objective to facilitate understanding of the patient and family by answering their questions. (N16)

The professional must tell the patient just what he wants to know, taking care not to go beyond his comprehension. (N11)

[...] in a planned, gentle and courteous way. (N10)

The speeches of nurses presented in this context demonstrate that the use of such tactics can influence the communication of bad news to the patient. By using these techniques, the nurse starts to develop communication skills in order to respond to inquiries from patients without, however, transcend their understanding.

In this perspective, it is noteworthy that such communication skills are part of the profession of nurses, which is why their professional curricula should prepare them for it21. Thus, it becomes necessary the formal inclusion of experiences during their undergraduate program, approaching other teaching strategies, for example, the use of psychodrama techniques using the communication of bad news22. This fact was mentioned:

It is always tricky because at graduation we were not prepared for this kind of approach. (N18)

It is important to remember that communicating difficult news is not the exclusive issue of physicians, but also of nurses. Thus, when revealing diagnosis, such professionals cannot forget that they are faced with a patient or family that experiences the impact of knowing that he is with a life-threatening disease23. Thus, we highlight the importance of further study about the communication of bad news process, particularly in patients without healing possibilities.

 

CONCLUSION

This study, through which discussed the communication of difficult news between nurses and terminally ill patient, points out that this task is difficult to achieve, due to lack of preparation to deal with the subjective aspects involved in this process, as the suffering expressed by the professional and the patient's reactions.
It became evident, through the testimonies of the participants of the study, that nurses play a key role in the comprehensive care, developing strategies that help patients understand their current situation and to adhere to treatment, promoting an effective interpersonal relationship.

Therefore, the study helped in the advancement of knowledge in the field of nursing, since it revealed the importance of the communication of difficult news effectively as a key strategy to support the clinical practice of nurses, directed to patient without healing possibilities.

 

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Direitos autorais 2015 Cristiani Garrido de Andrade, Solange Fátima Geraldo da Costa, Maria Emília Limeira Lopes, Regina Célia de Oliveira, Maria Miriam Lima da Nóbrega, Fátima Maria da Silva Abrão

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