Untitled Document

RESEARCH ARTICLES

 

Giving difficult news to families of children in serious condition or process of terminality

 

Giovana Calcagno GomesI; Daiani Modernel XavierII; Marina Soares MotaIII; Marli dos Santos SalvadorIV; Rosemary Silva da SilveiraV; Edison Luiz Devos BarlemVI

IPhD in Nursing. Nursing School Professor of the Federal University of Rio Grande. Leader of the Study and Research Group in Children and Adolescent Nursing and Health. Rio Grande, Rio Grande do Sul, Brazil. E-mail: giovanacalcagno@furg.br
IINurse. Master in Post-graduation Program in Nursing of the Federal University of Rio Grande. Member of the Study and Resarch in Children and Adolescent Nursing and Health. Rio Grande, Rio Grande do Sul, Brazil. E-mail: daiamoder@ibest.com.br.
IIINurse. Master degree in Post-graduation Program in Nursing of the Federal University of Rio Grande. Member of the Study and Research Group in Children and Adolescent Nursing and Health. Rio Grande, Rio Grande do Sul, Brazil. E-mail: msm.mari.gro@gmail.com
IVNurse. Master degree of the Post-graduation Program in Nursing of the Federal University of Rio Grande. Member of the Study and Research Group in Children and Adolescent Nursing and Health. Rio Grande, Rio Grande do Sul, Brazil. E-mail: marli-salvador@hotmail.com
VPhD in Nursing. Nursing School Professor of the Federal University of Rio Grande. Leader of the Study and Research Core in Health. Rio Grande, Rio Grande do Sul, Brazil. E-mail: acgomes@mikrus.com.br
IVPhD in Nursing. Nursing School Professor of the Federal University of Rio Grande. Researcher of the Study and Research Core in Health. Rio Grande, Rio Grande do Sul, Brazil. E-mail: giovanacalcagno@furg.br


ABSTRACT: The aim was to learn the experiences of nurses in communicating difficult news to families of hospitalized children in serious condition or process of terminality. This qualitative study of nine nursing professionals on the staff of a newborn intensive care unit was conducted at a university hospital in southern Brazil, in the second half of 2008. Data were collected by semi-structured interview, and analyzed using thematic analysis, which yielded three categories: preferring not be the first to give the news, having difficulty communicating with the family, and destroying hope by giving the difficult news. It was concluded that developing the ability to communicate difficult news humanely strengthens the family in its role as caregiver.

Keywords: health communication; hospitalized child; family; nursing.


 

INTRODUCTION

Assisting children with severe prognosis and advanced disease is a challenge, not only on the lived experience, but because the present risks, the fear of the unknown and death, as well as the suffering and feelings experienced by their families and by professionals caring staff. Nursing professionals must be prepared to receive and care for these children and their families, requiring communicating difficult news to the family in a humanize perspective, helping them in their needs during the children´s terminally process, qualifying care1.

Communicating difficult news is a daily challenge for the professional, requiring sensitivity to identify the impact of the other´s life, present at that time2. To be present, monitoring, supporting and sharing another's pain requires availability with preparation, which usually is not offered only by professional training or institutional spaces for sharing and development3.4. This availability makes the health professional living with the patient and his family making it difficult to be the protagonist of bad news, perhaps most difficult communication of the terminally child.

In this context, the guiding question of this study was: what are the experiences of nurses to communicate the family of the hospitalized child the severity of his clinical condition or the possibility of child's death? From this question, it was aimed to know the experiences of nurses to communicate difficult news for the family of the hospitalized child in serious condition or a terminally process.

LITERATURE REVIEW

Communication is a valuable tool in nursing assistance5,6. Through nursing, it is carried out a holistic care, establishing a relationship of trust with the patients, families and community, facilitating the nurse-patient interaction process, helping to meet the particularities of each subject1,7,8.

Nursing professionals must use contribution of communication as a humanizing supporter of children care with severe prognosis and his family, as an instrument approach, dialoguing to answer questions about treatment, diagnostic examinations or medical procedures, minimizing anxiety on the child and his families to the experienced situation2.9.

For an effective communication of the professionals it is necessary to rescue their sensitivity and focus their attention on how information is transmitted and how that message is received by the family, avoiding noise in the process because the way the family decodes and assigns meaning to the news received may ease or hinder when receiving it9,10. The professional should seek to know the cultural characteristics, previous experiences and current family situation of children in terminally situations in order to identify the most appropriate way to communicate a difficult news3.

Such communication is not always easy, due to professional and personal difficulties to deal with the terminally process of the child being cared11. In general, the communication of difficult news is related to disclosure of diagnosis of advanced disease or irreversible prognosis; the need to undergo a mutilating surgery; to information about adverse effects of chemotherapy and radiotherapy; the limitation or exhaustion of therapeutic resources to cure or control the disease and the expectation of near death3. Thus, the communication of a difficult news to the family of a hospitalized child is not an easy time for both the professional in charge of communication as for the family caregiver and can be traumatic for both4-12.

The difficulty of professionals in communication difficult news can often be associated with graduation gaps, in which the subject communication with patients without therapeutic possibility or in serious condition may have not been sufficiently discussed11. Death is a remarkable aspect in the history of nurses, confronting their own feelings and the ability to identify the child and his family needing for care and emotional involvement to face this moment3. Study about the death process under the perspective of nurses found that they consider more painful when the death is of a child, and this causes feelings of anger and suffering. The sense of loss seems deeper when it is a child, for uniqueness of childhood or consider their loss as premature5. Therefore, the communication of difficult news can arouse powerless to the possibility of loss, especially when it is a child9.11.

METHODOLOGY

This is a descriptive research with a qualitative approach. The descriptive research is about the description of the investigated phenomenon, knowing the problems experienced and deepen their study in the limits of a specific reality13,14. It is a qualitative approach because it works with the meanings, reasons, aspirations, beliefs, values ​​and attitudes, enabling the researcher to observe the agents in their daily lives, socially living and interacting with them13.

This study was during the second half of 2008, in a neonatal intensive care unit (NICU) of a hospital in the south of the country. It is a big hospital, because it has 185 inpatient beds. The NICU has 10 beds and serves medical and surgical patients aged between zero to 28 days.

There was in the study nine professionals, four nurses and five nursing technicians working in the sector in different shifts. The inclusion criteria of the study participants were: to be active in professional nursing area for over six months and take part in the study by signing the Consent Term and allow recording the interview and dissemination of results. This agreement was signed in two copies given one copy to each participant. As a criterion for exclusion from the study were: being on vacation or medical leave during the period of data collection and working in the area for less than six months.

Data collection was through semi-structured interviews with each participant. The interview is an activity in which a successive approximation of reality that never runs out occurs, making a particular combination of theory and practice13. The interviews were ​​in the participants´ workplace in prearranged day and time. The interviews were recorded, transcribed and lasted about forty minutes.

Data were analyzed by thematic analysis13, This technique is operationalized in three steps: Pre-analysis, in which the units of record that guided the analysis were identified; exploration the material in which the original data were classified and grouped into categories; and, finally, treatment of results in which there was the interpretation of the data, correlating them with thematic scholars.

The principles of Resolution No. 196/96 of the National Health Council of the Ministry of Health were taken into consideration15. The research project was submitted to the Ethics Committee of the hospital and approved with Opinion number 96/2008. The speeches of the study subjects were identified by the letter I, followed by the number of the interview as a way to ensure their anonymity.

RESULTS

From the analysis, three categories emerged: Preferring not being the first to say the news; Having difficulty communicating with family; Breaking the hope through the communication of difficult news.

Preferring not being the first to say the news

Some nursing professionals feel more secure to talk about the terminally process of the child, when communicating the difficult news given by the doctor and the family already knows about the child´s severe clinical situation.

If the family knows [...] if the doctor said the child was serious. For me it is easier when the doctor already said so. (I8)

When the doctor has already informed, if the family member comes to talk to me, I feel comfortable. I won´t speak normally, quiet. I speak with politeness: - You know the situation is severe. The doctor explained to you, it is happening. I try to explain like this, when the doctor has already cleared the situation. (I3)

Other professionals assign the communication of the difficult News to the doctor, because the evidenced diagnosis is given by results of examinations and in the child clinical profile, avoiding speaking on the subject.

We do not have the habit of speaking the diagnosis. We say that the case is complicated, expecting the examinations to confirm it [...]. Normally, we do not give this type of information, the doctors do [...]. They usually ask several examination to confirm the diagnosis. After they informto the family. (I8)

It's complicated, according to what the doctor has talked to the families. Because based on the results of the examinations, the information is more technical. The nurse and the doctor give the news. Because if we give too much technical information, we will be interfering with therapy [communication]. So, I prefer it when the doctor speaks. (I5)

Having difficulty communicating with family

Some professionals have difficulties to communicate the News to the child´s family, especially when questioned about the health situation of the child and he was serious ill or in terminally process:

I don´t feel good to tell them: - You son is very sick. I imagine all the suffer I cause. I try to avoid it, because I don´t know how to deal with this suffering. It is very sad [crying]. (I2)

The difficulty to communicate this tough news are related to the professionals´ skill to deal with their own feelings and the possibility of causing suffering to the family.

I don´t speak to much, I don’t like talking, I prefer to stay away from this, because when I talk I think about them, I think in people I have lost, I think about the children, I think about the parents’ pain, it is so bad, it hurts a lot. (I1)

Some professionals prefer to stay away from the child and the Family having difficulty to face the terminally process and the communication of difficult news.

I notice we avoid this nursing room. We enter fast, we do our service, but we don´t stay too much. We try to avoid talking to the family because we don´t know how the mother will react, who stays here all the time. (I9)

We don´t want the family thinking only about it […] being sad. They talk and ask about this all the time. We are afraid to say something that worsen the situation. So we shut up. (I9)

Breaking the hope through the communication of difficult news.

Some professionals showed that the difficulty to communicate difficult news is because that the information asked by the family can produce an impact capable of making hope(less) in the child recovery with that clinical situation.

We can´t stop hope [..] when talking to them. While they have hope […] Actually, it depends on the situation that I will talk with the family or not. (I6)

When directly confronted by the Family, the professionals must not lie, using as a strategy avoiding the details, smoothing the truth and letting the family to analyze the information received.   

Eles sempre têm esperança de estarem errados, de que vai acontecer um milagre e a criança vai se salvar [...]. É claro, que isso pode acontecer [...]. Não somos deuses. Tentamos suavizar para diminuir o sofrimento, mas comunicamos que o quadro está grave. (E1)

When they ask the son´s situation, we never lie. If it is a serious situation: - Look, it is getting hard. We don´t need to give details, even because it is very hard for the family […] We use smooth words to tell them about the serious situation. So, the person understand as they want. The thing is to avoid them losing hope in the son´s recovery. (I4) 

DISCUSSION

When there is evidence of a serious prognosis or terminally process of a child and there is not the possibility of the therapeutic healing, it is necessary that health professionals, particularly nursing are prepared to communicate the serious situation to their families3. The communication of difficult news first performed by other health care professional facilitates confronting this situation and team interaction with the hospitalized children and their families, enabling to express their suffering and questioning.

It seems to be in the imagination of nursing professionals that the communication of a difficult news given first by the doctor, would facilitate the process of confronting the situation facing the families of the child, making it easier to establish dialogue with them5. In these cases, having another professional dealing this first issue eases the situation, allowing time for the patient and their relatives overstepping their suffering and regain emotional control, being easier to deal with them at the moment.

For nurses coping with family loss of the son, it requires a genuine dialogue16. Thus, it is essential to establish a more effectively communication way with them through authentic presence, face to face, I-You relationship, because every moment of the life cycle are of joy or sadness to be respected and experienced by nurses with the client in a dignified, respectful and human manner2.

However, the communication of difficult news to families of hospitalized children in serious situation or terminally process can cause feelings of loss. That is why in everyday practice the most common attitude of nurses is to hide the diagnosis, assigning the doctor the responsibility of revelation.

The difficulty in talking about the topic is shown in speaking only when asked, taking place in society the culture of saving and relieve the patient/family of their own bad news16. This difficulty can cause professionals to take strategies, consciously or not, trying to hide the diagnosis, as this measure diminish the suffering of the patient, family and professional. Announcing to parents the imminent death of their children among many other bad news, are limited situations in which suffering can become intolerable, causing the illness in a professional2,12,17.

When the disease progresses and the professional can no longer find shelter in technological resources, there is a need to communicate to the family the severity of the situation. However, the lack of preparation of professional health team for this communication and emotional support to patients can generate silences, abrupt adverse prognostic communications with serious damage to the therapeutic relationship2,11.

It was evident that these professionals have difficulty experiencing the pain of loss that the family may feel when communicated of the possibility of the child terminally2,11. In this case, the professional needs to manage the situation and establish a therapeutic communication satisfactorily, since nursing care, in principle, should involve the patient, family and community, providing extra support to the family to help overcoming this moment of pain9,18.

To defend from these situations, extremely distressing and difficult, professionals who deal with death often isolate themselves2. The training of health professionals, even today, follows the discourse of impersonality and detachment from facts that daily confront in daily practice: pain, suffering and especially death2.

The denial of a terminally process and death puts professionals in an illusory state of omnipotence that would protect them from their fears and anxieties. It was evident that to prevent the communication of difficult news about the terminally process of the child, situation extremely distressing and difficult in the daily work of nursing, professionals prefer to isolate themselves from family, avoiding facing the situation19. Thus, the fears and feelings may result from construction of the myth that nurses should be unmoved by the death situation.

Facing a terminally process of the child consists of problematic situation that mobilizes psycho-socio-spiritual patients, families and professionals that maintains an involvement with this, causing different reactions such as fear, isolation and retraction of professionals during communication of difficult news. Announcing parents the imminent death of their children among many other bad news, feature limited situations in which suffering can become intolerable, triggering emotional and mental disorders in the professionals2,12,17.

The communication of difficult news, as the terminally process of a child can reduce the family hope2. The lack of professional preparation for communication of difficult news and providing emotional support can also cause silence11. This defense always implies a conscious self-deception that would allow the family to keep hope. Hope provides the family of the child a sense of special mission, which helps to lift the spirits and endure suffering, when it becomes painful. For others remains a temporary form of denial, but necessary.

When referring to the communication of the possibility of death could decrease/end the hopes of the patient/family in the recovery of the child is denying death. Denying is to change reality when a person cannot or will not adapt to it. Thus, it appears that, faced with the possibility of death, many professionals continue to insist on the passenger nature of the disease, continuing to talk optimistically about future plans. The denial of death is advocated as a way to allow the patient to continuously receive reinforcement to remain in a state of denial4.

Thus, in the need of communicating difficult news to families of hospitalized children in serious situations or in terminally process, nursing professional must develop the skill of communication and management of the situation, using strategies that enable the creation of spaces for dialogue with the child and family2 Through dialogue it works the subjectivity in care helping them to manage their emotions and feelings, making them part of the caring process20,21.

CONCLUSION

This article focuses on the experiences of nurses to communicate difficult news for family of hospitalized child in serious situations or in terminally process. From their experiences, there were: preferring not to be the first to say news, having difficulty communicating with family and breaking hope by the communication of the difficult news.

It was found that nursing professionals have difficulty communicating with a difficult news to the family of hospitalized child in a serious situation or in terminally process, because they do not feel prepared to face their own feelings on the possibility of causing suffering to the family. They prefer not to be the first to communicate a difficult news sheltering in communication effected by the doctor, mainly for fear of breaking with the hope of the family before the terminally process of the child.

Despite the demonstration that some nursing professionals prefer to stay away from the child and his family due to the difficulties facing the terminally process and the need to communicate difficult news, we understand that this is a time when the family needs most support and listening, as they are suffering by the impending loss of the child, vulnerable and fragile.

Developing the ability to communicate difficult news in a human way can enable the family to express their feelings about their fears and anxieties, empowering them to cope with the situation, enabling them to play their role as caretaker of the child in serious situations or death process more instrumental, minimizing their suffering. It needs to be supported in providing care and adequately informed about the child's needs, for only thus will have some control over the situation, living their grief jointly with professionals, feeling supported at this time.

It is important to highlight that to promote the skills related to communication of difficult news to families of children in serious situations of terminally, it is necessary that these issues are discussed in more training of health professionals, and nursing in particular. Such situations can be dramatized and problematized by teachers and students, inspiring reflections to contribute to the ethical-political training of these future professionals.

It is vital that professionals who deal with patients outside the therapeutic possibilities and family caregivers receive psychological support to better coping with their anxieties and limitations in care practice. With this, it is expected a differentiated service in which these professionals recognize that, although the impossibility of cure exceeds the therapeutic range, such a condition never exceed the limits of care, their job objective.

The study has as limitations being performed in a single context not allowing generalizations. Other studies should be conducted in order to evaluate how families of children in serious situations or in a terminally process evaluates how difficult the news they are given by professionals in different health contexts, which may indicate strategies to be used to improve how this communication has been performed.

REFERENCES

1. Tubbs-Cooley HL, Santucci G, Kang TI, Feinstein JA, Hexem KR, Feudtner C. Pediatric nurses' individual and group assessments of palliative, end-of-life, and bereavement care. J Palliat Med. 2011; 14: 631-7.

2. Michelson KN, Emanuel L, Carter A, Brinkman P, Clayman ML, Frader J. Pediatric intensive care unit family conferences: one mode of communication for discussing end-of-life care decisions. Pediatr Crit Care Med. 2011; 12: 336-43.

3. Meert KL, Schim SM, Briller SH. Parental bereavement needs in the pediatric intensive care unit: review of available measures. J Med Palliat. 2011; 14: 951-64.

4. Ministério da Saúde (Br). Instituto Nacional de Câncer. Comunicação de notícias difíceis: compartilhando desafios na atenção à saúde. Rio de Janeiro: INCA; 2010.

5. Beckstrand RL, Rawle NL, Callister L, Mandleco BL. Pediatric nurses' perceptions of obstacles and supportive behaviors in end-of-life care. Am J Crit Care. 2010; 19: 543-52.

6. Peña ALN, Juan LC. The experience of hospitalized children regarding their interactions with nursing professionals. Rev Latino-Am Enfermagem. 2011; 19: 1429-36.

7. Graaff FM, Mistiaen P, Devillé WLJM, Francke AL. Perspectives on care and communication involving incurably ill Turkish and Moroccan patients, relatives and professionals: a systematic literature review. BMC Palliat Care. 2012; 11: 17.

8. Iranmanesh S, Axelsson K, Sävenstedt S, Häggström T. Caring for dying and meeting death: experiences of Iranian and Swedish nurses. Indian J Palliat Care. 2010; 16: 90-6.

9. Eden LM, Callister LC. parent involvement in end-of-life care and decision making in the newborn intensive care unit: an integrative review. J Perinat Educ. 2010; 19: 29-39.

10. Bousso RS, Serafim TS, Misko MD. The relationship between religion, illness and death in life histories of family members of children with life-threatening diseases. Rev Latino-Am Enfermagem. 2010; 18: 156-62.

11. Salinas MM. La relación entre el equipo de salud y la familia del niño muriente. Acta Bioeth. 2011; 17: 247-56.

12. Hita EO. Hacia el futuro en cuidados intensivos pediátricos. Med Intensiva. 2011; 35: 328-30.

13. Minayo MCS, organizadora. Pesquisa social: teoria, método e criatividade. 29ª ed. Petrópolis(RJ): Vozes; 2010.

14. Polit DF, Beck CT Fundamentos de pesquisa em enfermagem: avaliação de evidências para a prática de enfermagem. 7ª ed. Porto Alegre (RS): Artmed; 2011.

15. Ministério da Saúde (Br). Conselho Nacional de Saúde. Resolução nº 196, de 10 de outubro de 1996: diretrizes e normas regulamentadoras de pesquisas envolvendo seres humanos. Brasília (DF): Ministério da Saúde; 1996.

16.Reinke LF, Shannon SE, Engelberg RA, Young JP, Curtis JR. Supporting hope and prognostic information: nurses' perspectives on their role when patients have life-limiting prognoses. J Pain Symptom Manage. 2010; 39: 982-92.

17. Cook KA, Mott S, Lawrence P, Jablonski J, Grady MR, Norton D, et al. Coping while caring for the dying child: nurses' experiences in an acute care setting. J Pediatr Nurs. 2012; 27: 11-21.

18. Gomes GC, Pintanel AC, Strasburg AC, Erdmann AL. O apoio social ao familiar cuidador durante a internação hospitalar da criança. Rev enferm UERJ. 2011; 19: 64-9.

19. Azeredo NSG, Rocha CF, Carvalho PRA. O enfrentamento da morte e do morrer na formação de acadêmicos de medicina. Rev Bras Educ Med. 2011; 35: 37-43.

20. Menossi MJ, Zorzo JCC, Lima RAG. The dialogic life-death in care delivery to adolescents with cancer. Rev Latino-Am Enfermagem. 2012; 20: 126-34.

21. Santos JL, Bueno SMV. Death education for nursing professors and students: a document review of the scientific literature. Rev esc enferm USP. 2011; 45: 272-6.