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Perceptions of patients, families, physicians and nurses regarding challenges in cancer disclosure: A descriptive qualitative study
European Journal of Oncology Nursing 25 (2016) 55e61
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European Journal of Oncology Nursing journal homepage: www.elsevier.com/locate/ejon
Perceptions of patients, families, physicians and nurses regarding challenges in cancer disclosure: A descriptive qualitative study Maryam Ehsani a, Fariba Taleghani b, Simin Hematti c, Parvaneh Abazari b, * a
Students Research Center, Faculty of Nursing and Midwifery, Isfahan University of Medical Sciences, Isfahan, Iran Nursing and Midwifery Care Research Center, Faculty of Nursing and Midwifery, Isfahan University of Medical Sciences, Isfahan, Iran c Radiotherapy and Oncology Department, Faculty of Medicine, Isfahan University of Medical Sciences, Isfahan, Iran b
a r t i c l e i n f o
a b s t r a c t
Article history: Received 1 February 2016 Received in revised form 4 September 2016 Accepted 9 September 2016
Purpose: The findings of numerous studies have illustrated that there is still a high proportion of cancer patients in Eastern and Middle-East countries including Iran, who are not properly informed of their disease due to the concealment atmosphere which still prevails. This descriptive qualitative study is aimed at exploring perceptions of patients, patients’ family members, physicians and nurses regarding cancer disclosure challenges. Methods: Thirty-five participants (15 patients, 6 family members, 9 physicians, and 5 nurses) were selected through purposive sampling. The data were collected through in-depth interviews; after which they were analyzed using a qualitative content analysis with an inductive approach. Results: Data analysis revealed the following three categories: first, challenges related to healthcare system which deals with the deficiencies, strains and concerns in medical setting and healthcare team training; second, challenges related to family insistence on concealment which includes their fear of cancer disclosure and its negative impact on the patients; and third, challenges related to policy making which consists of deficiencies in legislative and supportive institutions for advocacy of truth telling. Conclusions: Successful move from concealment to effective disclosure attitude in cancer patients in Iran requires a national determination for resolving challenges in medical education as well as other different social, cultural and policy making dimensions. © 2016 Published by Elsevier Ltd.
Keywords: Cancer disclosure Breaking bad news Qualitative study
1. Introduction Announcing the diagnosis of a life-threatening disease is one of the most challenging and stressful tasks (Stiefel and Krenz, 2013). Cancer as a life-threatening disease, despite significant advances in its treatment or at least its control, is still considered in many cultures equal to death and its diagnosis is associated with significant fear, uncertainty and a complex and laborious treatment (Mazilu et al., 2010). Bad news disclosure in medicine has passed a long historical path. The Hippocratic writings suggested that “honest revelation” about disease outcome could be the cause for worsening of a patient's prognosis. Plato also believed that a lie could sometimes act
* Corresponding author. E-mail addresses: [email protected] (M. Ehsani), taleghani@nm. mui.ac.ir (F. Taleghani), [email protected] (S. Hematti), [email protected] (P. Abazari). http://dx.doi.org/10.1016/j.ejon.2016.09.003 1462-3889/© 2016 Published by Elsevier Ltd.
as a medicine to prevent undesirable actions and views in patients (Schwartsmann and Brunetto, 2013). Moreover, the first Code of Ethics issued in 1847 by the American Medical Association, instructed physicians to avoid making “gloomy prognostications” to patients, leaving the information on cancer diagnosis and bad prognosis to their relatives, because the life of a patient could be shortened not only by the acts, but also by the words and the style of a physician (AMA, 1847). In the Western culture, since the second half of the twentieth century and with the gradual disappearance of paternalistic tradition, truth telling has undergone a lot of changes. During this period, rights of individuals and autonomy models are considered paramount, and following this model, bad news is communicated directly and honestly to the patients (AlMohaimeed and Sharaf, 2013; Tabak et al., 2012). Today in most western countries, informing the cancer patients of their disease is a common practice; but in Eastern countries, despite the fact that this phenomenon is more acceptable than the previous decade, there is still a significant percentage of cancer patients in some Asian countries and the Mediterranean who are
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not informed of their disease (Bou Khalil, 2013; Cherny et al., 2011; Laxmi and Anjum Khan, 2013; Ozdogan et al., 2006). Findings of various studies show that the family's request from the medical team not to disclose the disease to the patient is one of the most important reasons for secrecy in these countries (Bou Khalil, 2013; Cherny et al., 2011; Laxmi and Anjum Khan, 2013; Ozdogan et al., 2006). Besides the opposition of the family, there are other factors considered as obstacles in full disclosure of cancer to patients. These factors include: fear of physicians lacking the ability to control emotional reactions of patients after the disclosure, fear of harming the patients with cancer disclosure, physicians' concern of the fact that cancer disclosure is not acceptable from the viewpoint of professional culture as well as dominating culture of society, lack of proper training for healthcare team on the fundamentals of effective communication in disclosing bad news, workload and time shortage of healthcare team as well as the lack of legal code on the necessity of informing the patient of their disease (Bou Khalil, 2013; Cherny et al., 2011; Laxmi and Anjum Khan, 2013; Ozdogan et al., 2006; Tabak et al., 2012). Similarly, the results of several studies in Iran suggest that about 40% of cancer patients are not informed of their disease. However, 88% of patients agree with diagnosis disclosure and 59% of cancer patients are willing to get maximum information on their disease by their physicians (Larizadeh and Malekpour-Afshar, 2007; Samimi Ardestani et al., 2015, Tarighat saber et al., 2006; Zamani et al., 2011). Despite the ample evidence which illustrates that disclosure of bad news in a proper way would result in easier acceptance of treatment, more satisfaction and even lower levels of anxiety and mood disturbances in cancer patients (Al-Mohaimeed and Sharaf, 2013; Laxmi and Anjum Khan, 2013; Schofield et al., 2003), high proportion of cancer patients in Iran are not yet informed of their disease. Research on why this happens is inadequate. Multiple sources emphasize that bad news disclosure is an entirely cultural issue in which perceptions and attitudes of every society's individuals play an important role (Kagawa-Singer, 2013; Zahedi, 2011). Moreover, qualitative studies are among the best ones to reveal these attitudes in a “culture” which may be hidden from daily awareness (Munhall, 2007). This article, which itself is part of a larger study entitled “Developing and implementing breaking bad news protocol for cancer patients”, aimed to explore perceptions of cancer patients, their families, physicians and nurses as main participants in bad news disclosure on the main challenges in this process. 2. Aim The aim of this study is to explore the perceptions of cancer patients, their families, physicians and nurses concerning the challenges in disclosure of cancer diagnosis. 3. Method 3.1. Study design In this study, descriptive qualitative method was applied. The overall purpose of a descriptive qualitative study is to describe or explore a phenomenon, problem or issue and can encompass a broad range of questions relating to people's experiences, knowledge, attitudes, feeling, perceptions and/or views. It is suitable for “why”, “what”, “where” and “how”, questions (Cronin et al., 2015). 3.2. Participants In this study, all participants were recruited from a university hospital in Isfahan Province, Iran. This hospital is one of the main
referral centers for cancer patients in central and southern Iran. The participants in all four groups (patients, patients' family, physicians and nurses) were purposively chosen to ensure a range in sociodemographic, occupational and clinical characteristics such as age, cancer type, specialty, etc in the groups. In purposive sampling, researchers deliberately select their participants using two criteria: first, the fit between their experience and research question, and secondly, the presence of the characteristics of a “good informant” (Munhall, 2007). Inclusion criteria for the patients were as follow: age of 18 or older, a definitive diagnosis of cancer based on pathologic findings, awareness of the diagnosis (this was obtained through nurses and physicians before interviewing the patients) and lack of physical or cognitive difficulties affecting their participation. Inclusion criteria for family members were: having close family relationship with the patients, knowing patients’ cancer diagnosis and lack of physical and cognitive problems. Inclusion criteria of physicians and nurses were: having at least one year experience of treatment and care of cancer patients. 4. Procedure The data of this study were collected from October 2014 to June 2015 using semi-structured in-depth interviews with participants. All interviews were conducted in a private room at the hospital and the time and place were determined with the consent of the participants. Length of interviews varied between 30 and 120 min and the median length was 50 min. Participants’ selection and data analysis continued until reaching data saturation point. Data saturation is the stage where no new information was obtained through data analysis and when this repetition occurs, sampling may cease (Munhall, 2007). All interviews were conducted with the written consent of the participants and were performed and recorded by one of the researchers (ME). All interviews began with general questions to establish a close relationship based on trust between the interviewer and the participants and then, interviews dealt with more precise questions on the basis of the outcome of initial parts of the interviews. Examples of interview questions are presented in Table 1. 4.1. Data analysis Qualitative content analysis will suffice for many studies in the area of health, especially if they are descriptive or their aim is to describe an important topic in a particular group of people (Green and Thorogood, 2014). In this study, the qualitative content analysis method of Graneheim and Lundman was used for data analysis (Graneheim and Lundman, 2004) and an inductive approach was applied for this process. In Inductive content analysis approach, the categories are derived from the data, and the researcher moves from the specific instances to the general statement. We generated verbatim transcriptions of the audio taped interviews and two researchers (ME and PA) read all the transcriptions to immerse in the data and achieve a common sense with the perceptions of the participants. Firstly, ME and PA independently selected all meaning units (sentences or paragraphs that were extracted according to the participants' statements) and condensed meaning units of four selected manuscripts (one patient, one patient's family member, one physician and one nurse). Then, they were discussed, and after resolving the discrepancies, ME extracted the condensed meaning units of the remaining transcripts and discussed them with PA. Subsequently, ME and PA assigned codes to the condensed meaning units, reflecting the words of the participants in a more abstract way. Finally, similar codes were grouped into more comprehensive subcategories and categories
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Table 1 Examples of questions from the interview guide: Participants
Questions
Patients
When did you first realize that you have cancer? How? By whom? Were you satisfied of how you got informed of the disease? Why? Should a cancer patient be aware of their disease? Why? Why do you think some cancer patients are not told of their disease? What is the most important reason for concealing the diagnosis from the patient? When did the patient first get informed of their disease? How and by whom? What role did you have in the process of informing the patient of their cancer diagnosis? Should cancer patients get informed of their disease? Why? Why do some families insist on concealing the disease from the patient? How do you usually inform the patient of their diagnosis? Which factors makes you to conceal cancer disease from the patients themselves? Why do physicians sometimes follow the request of patient's family to conceal the disease from the patient? What strategies can help to solve the problems with bad news disclosure in our country? How much do you participate in the process of cancer diagnosis disclosure to the patients and their family? What are the most important obstacles which make you conceal the disease from the patients themselves? What strategies can help to solve the problems with bad news disclosure in our country?
Family members
Physicians
Nurses
through an inductive process by comparison, reflection and interpretation by ME. All sub-categories and categories were discussed with PA and in case of persisting disagreement; the judgment of a third researcher (FT) was decisive. 4.2. Rigor Confirmability, credibility, dependability and transferability were used to assure various aspects of rigor (Guba, 1981). Confirmability was enhanced by bracketing and keeping a clear and easy-to-follow audit trail of all research activities and analysis notes. To ensure credibility, we used long presence in the clinical setting, maximum variance of sampling, peer debriefing or reviewing of the data, codes, subcategories and categories and member checking of the findings by research participants. Dependability was also improved by engaging more than one researcher in data analysis. Recruiting participants who varied on demographic characteristics and cancer type helped transferability of the results. The authors’ preconception was that the challenge of concealing the cancer disclosure from the patients is a multi-factorial phenomenon which is affected by different cultural, social and professional factors. They thought varied cultural beliefs among Iranian families on cancer as well as harmful effects of its disclosure on patient recovery could be a main challenge in cancer disclosure. Furthermore, authors believed that defects in health care system especially among professionals could spur this challenge. Researchers tried to mitigate the potentially deleterious effects of their preconceptions that may taint the research process by techniques such as writing memos and reflexive journal. This process is known as bracketing in qualitative researches and it means acknowledging and setting aside what you already know about a research interest, so that you do not impose your prejudices on what emerges from the research methods and processes (Taylor and Francis, 2013). 4.3. Ethical considerations This study was approved by the Ethics Committee of Isfahan University of Medical Sciences. Verbal and written consent was obtained from participants. All necessary measures were taken for keeping anonymity of the participants and confidentiality of their identity. Essential information regarding the purpose of the study was given to the participants in oral and written form, and it was emphasized to them that they could withdraw from the study anytime they wish.
5. Results 5.1. Participants’ characteristics In this study, 35 participants including 15 patients, 6 family members, 9 physicians and 5 nurses were engaged. Patients participating in the study had a wide range of different types of cancer, including colon, leukemia, breast, brain, Hodgkin, multiple myeloma and skin. The average age of patients was about 45 years, and for the family members it was 49 years. The range of passed days since cancer diagnosis in patients was between 60 and 2520 days and in family members it was 150e1980 days. The average of passed days since cancer diagnosis in patients was 710 days and in family members it was 760 days. The average work experience was about 16 and 9 years for physicians and nurses respectively. Further characteristics of the participants are illustrated in Table 2. 5.2. Categories The following three categories were obtained through findings of the present study: challenges related to healthcare system, challenges related to family insistence on concealment and challenges related to policy making. The main categories and subcategories produced by data analysis are shown in Table 3. 5.3. Challenges related to healthcare system This category includes barriers pertinent to the healthcare system and its staff and consists of four sub-categories: “Job strain”, “Fear of the consequences of bad news disclosure”, “Lack of formal training for healthcare team” and “Lack of holistic view to the patient ”. Healthcare team especially physicians believe that excessive workload is one of the reasons for avoiding cancer disclosure to patients. They believe that job strain makes it often difficult for them to spend enough time for proper communication with the patient and in many cases physicians prefer to disclose the news in brief to the patient's family members. An oncologist says: “When a physician has to visit 50 patients in the hospital from morning to noon, must train students as well, should do diagnostic work, for example, controlling patient's blood smear; he wouldn't certainly have enough time to talk with the patient about his illness.” [D3]. A patient says: “Doctors are so busy that they don't have time to talk with the patients about their disease, and just disclose it in brief to their family members.” [P2].
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Table 2 Participants’ characteristics. Participant
Characteristics Age (year)
Gender
Education level
Cancer type
Time since diagnosis (month)
Patient
20-29: 30-39: 40-49: 50-59: 60-69:
Male: 6 Female:9
Illiterate: 1 Primary: 4 High School: 6 University: 4
<6 months: 4 6-12 months: 4 > 1 year : 4 > 5 year : 3
Family Member
30-39: 1 40-49: 1 50e59:3 60e69:1
Male: 3 Female: 3
Primary: 1 High School: 4 University: 1
Colon: 3 Leukemia: 2 Breast: 4 Brain: 2 Hodgkin: 1 Multiple Myeloma: 1 Skin: 2 Colon: 2 Leukemia: 1 Breast: 1 Brain: 1 Hodgkin: 1
Physician
30-39: 2 40-49: 5 50-59: 2
Male: 5 Female: 4
Specialist: 9
Nurse
20-29: 1 30-39: 4
Male: 2 Female: 3
Bachelor: 4 Master: 1
2 3 3 5 2
<6 months: 1 6-12 months: 2 > 1 year : 2 > 5 year : 1
Relationship with Patient
Work experience (year)
Job status
Housewife: 6 Employee: 2 Worker: 1 Self- employment: 2 Student: 1 Retired: 3 Wife: 1 Husband:2 Mother: 1 Daughter: 1 Son: 1 1-4: 1 5-9: 1 10-14: 1 15-19: 2 20-24: 4 1-4: 1 5-9: 2 10-14: 2
Housewife: 2 Employee: 2 Worker: 1 Retired: 1 Radiotherapist & Oncologist: 2 Hematologist & Oncologist: 3 Surgeon: 2 Psychiatrist: 2 Nurse: 3 Head Nurse: 1 Psychiatric Nurse: 1
Table 3 Categories and subcategories obtained from data analysis. Categories
Subcategories
Challenges related to health care system
Job strain Fear of the consequences of bad news disclosure Lack of formal training for healthcare team Lack of holistic view to the patient Family fear of the effects of breaking bad news on the patient Family fear of the inappropriate disclosure of bad news by healthcare team Family belief on the lack of necessity for patient awareness of their diagnosis Lack of legal code Lack of supporting resources
Challenges related to family insistence on concealment
Challenges related to policy making
Fearing the consequences of bad news disclosure was another sub-category of challenges associated with healthcare system and was seen both among physicians and nurses. Physicians usually avoided disclosing the news to the patients for following reasons: fear of psychological outcomes such as depression, fear of inappropriate reaction from patients after hearing the news such as anger and aggression; fear of complaints made by the patient's family claiming harm to patient's physical and psychological conditions. Nurses also preferred not to give any information to the patient and even his family about their diagnostic tests results, and leave it to the physicians for reasons such as lack of support for their participation in disease disclosure and fear of being reprimanded, especially by physicians. A psychiatrist says: “Physicians are more scared from the time they disclose to patients the cancer diagnosis, and patients become upset, and reflect it to them by anger, scream or cry”. [D6]. A nurse said: “When patients or their dependents ask about test result, I say I do not know, and tell them to ask their doctor because I am afraid to say something and then the physician asks me why I said so. But if doctors collaborate and support us, we can carry out this task very well.” [N2]. The participants considered lack of formal training during academic education as one of the challenges in disclosure of bad news and believed that such training could equip them with both knowledge and self-confidence in disclosing the news.
An oncologist says: “In Iran, physicians have never been trained about the fundamentals of psycho-oncology and disclosure of bad news; not even during residency and fellowship courses”. [D3]. Another oncologist adds: “Training is very crucial for disclosing bad news and the one who discloses the news must have already been well trained. When we do not get any training in this respect during formal education, it is sure we have neither the knowledge nor the confidence to do it.” [D4]. Additionally, the priority put by healthcare team on the physical aspects of treatment and lack of attention to psychological, social and spiritual aspects of a patient is another sub-category of healthcare challenges. A patient says: “As it is important to prescribe drugs to the patients, it is also crucial to talk to them, answer their questions, and be kind to them” [p11]. A nurse says: “Unfortunately, in our country, the importance put on the patient's physical needs and treatment is much more than other needs such as the need to get informed; spiritual and emotional need. Indeed, everything here is sacrificed for treatment”.[N3].
5.4. Challenges related to family insistence on concealment In Iran, usually family members of cancer patients are the first recipients of bad news even before the patients, and this is in many cases a major obstacle to inform the patients. Close family members
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do their best to hide the disease from the patient and in doing so they even convince the healthcare team, especially physicians, not to talk to the patient about the cancer diagnosis. This category itself is composed of three subcategories of: “family fear of the effects of disclosing bad news on the patient”, “family fear of the inappropriate disclosure of bad news by healthcare team” and “family belief on the lack of necessity for patient awareness of their diagnosis”. Fearing of patient disappointment and demoralization after getting informed of cancer diagnosis is one of the most important reasons for family persistence on concealing the disease from the patient. The wife of a patient says: “I think it's much better if the patient doesn't know it, because when we tell him about cancer diagnosis, he would lose his morale.” [F1]. An oncologist says: “As a physician I know when I give the news of cancer diagnosis to a patient, certainly he would get depressed and I know that this is not unusual and would get better through time, but the family wouldn't accept this and accordingly wouldn't let us to tell it ”.[D3]. Fear of family members from inappropriate disclosure of cancer news is another reason for their opposition to news disclosure to patients. In many cases, they are worried that the healthcare team would inform the patient of their disease in a sudden and nonempathetic manner and that is why they prefer either not to inform the patient of their disease at all or inform them gradually themselves. A patient says: “Doctors tell the news in a somehow more serious way; and they may do it in this manner to fear us so that we take it seriously, but families don't like this and prefer to tell it themselves gradually”.[P13]. Participating physicians' experiences somehow confirms the concerns of patients’ family members. An oncologist says: “Sometimes we have to talk to the patient very seriously and tell them that their disease is a malignant one and even fear them of it. However, we do this only with those patients who we recognize that if they are not scared, they would not follow up their treatment ”. [D4]. In this study, the family belief in lack of necessity to inform the patient of their disease was known as another reason for family opposition with cancer disclosure. Indeed, in Iran in many cases, family members based on their supportive attitude toward the patient with cancer diagnosis, do not feel the necessity to inform them of their disease and believe they can do all measures required for treatment and improvement of the patient's life quality. But they ignore the fact that it is the patient's right to be aware of the issues related to their disease and participate in decisions related to their own treatment process. A nurse says: “unfortunately, some of the patients' relatives don't deserve any right for the patient; in some cases patients aren't willing to go through chemotherapy in the final stages anymore, but the family insists on continuing it. Patients should be allowed to make the final decision”. [N4]. The wife of a patient says: “It's better for the patient to know nothing about their disease; it would suffice if only the family knows, and they'd do everything they can”. [F6]. 5.5. Challenges related to policy making This category embraces the findings which are related to the weaknesses in policy making on bad news disclosure and consists of two subcategories: “lack of legal code” and “lack of supporting resources”. In Iran, despite the emphasis put by the Patient's Rights Charter and Nursing Code of Ethics on the importance of informing the patient of issues related to their disease; there is no law that legally binds members of healthcare team to do this task; and that is why
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in many cases the patient is deprived from receiving the information about the disease. A psychiatrist says: “In the present conditions that the system itself eludes telling the truth and the family says “do not tell” while we all know that the right measure is to inform the patient; the only way to overcome the problem is provision of legal code. In such a situation, even if the family disagrees, the physician says that he is legally responsible to say so and tries to convince them”. [D6]. A patient adds: “If they set a law and make it binding, no one can disagree with it”. [p6]. For many participants, due to the high sensitivity of the session for bad news disclosure both for the announcer and the recipient, as well as the need to spend enough time; the assistance of supportive organizations such as insurance companies can play an important role in increasing the motivation and attention of the healthcare team to this important task, especially in conditions of high job strain. An oncologist says: “the session for disclosing bad news is in fact a counseling session, a lot of pressure is on ourselves as we have to disclose it. On the one hand, we are too busy to spend so much time for the patient, and on the other hand insurance companies should consider for the session a tariff equivalent to that of counseling sessions, as it is in other countries.” [D7]. A surgeon says: “If this was so, that is, the insurance companies support it or the medical centers offer special benefits for physicians especially surgeons and oncologists, it'd be very ideal, because it's a difficult task, especially in Iran with such a culture, not only the patients but also the physicians are under pressure as well.” [D8]. 6. Discussion In this study, the researchers tried to provide a clearer understanding of the challenges faced in cancer disclosure in Iran, through conducting a qualitative study and exploring perceptions of cancer patients and their families as well as physicians and nurses as members of the healthcare team. The findings of this study revealed that obstacles relating to healthcare system and its professionals are one of the main ones in cancer disclosure. Physicians, as one of the main members of the healthcare team in disclosure of cancer diagnosis, usually spend very little time for proper communication and interaction with patients. The main reason they put forth was their various responsibilities and busy schedules. Various resources confirm that high incidence of cancer diagnosis in recent years on the one hand, and shortage of oncologists on the other hand, has led to a rise in their workload (Bakhshi Biniaz et al., 2014; Ramezani, 2009). The finding of several studies also confirm the adverse impact of time shortage, fatigue and job exhaustion on physicians' poor performance in bad news disclosure. Indeed, the same studies show that many physicians, when encountering workload, usually put the main priority on patient treatment rather than the effective communication with patient; and even most of them use unexpected and inappropriate methods of communication for news disclosure (Bou Khalil, 2013; Cherny et al., 2011; Cialkowska-Rysz and Dzierzanowski, 2013; Li et al., 2012). The existing guidelines and protocols on breaking bad news consider multiple stages for bad news disclosure such as preparation, rapport, announcement, empathy and mutual understanding of the patient; and emphasize that this task should be performed step by step and on the basis of effective communication principles. Otherwise, it would result in dissatisfaction, non-compliance and doctor shopping among patients and their families (Buckman, 2005; Laxmi and Anjum Khan, 2013; Narayanan et al., 2010; Rabow and Mcphee, 1999, Salem and Salem, 2013). In this study, one of the reasons physicians avoided informing
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patients of cancer diagnosis, was fear of the consequences of such disclosure. Physicians usually are concerned that after disclosing the news of cancer diagnosis, the patient would react in a way that they are not able to control it or they fear facing the anger of families after informing the patient. Cherny et al. (2011) and Tabak et al. (2012) have mentioned the followings as the major reasons why physicians avoid disclosing bad news to the patients: the fear of not having enough knowledge about how to control emotional reactions of the patient, patient protection against damages caused by knowing about their disease and also fear of establishing a proper dialogue and communication while disclosing the news (Cherny et al., 2011; Tabak et al., 2012). In Iran, it seems that the physicians’ fear of disclosing bad news evolves mainly from lack of training on this process. Since physicians in Iran receive no formal training on communication skills in breaking bad news during their residency and fellowship, so in many cases they do not have the required knowledge and even confidence to do so, as well as how to cope and control a wide range of patient reactions. Several sources emphasize that training is the first step to improve the communication skills of physicians in relation to disclosure of bad news and it has a direct impact on the frequency of news disclosure by them. Despite the importance of training, there is no curriculum in many Middle Eastern countries dealing with this serious responsibility (Bou Khalil, 2013; Li et al., 2012; Ozdogan et al., 2006; Tsoussis et al., 2013). Nurses as another member of the healthcare team, do not play an important role in disclosing bad news alongside the physicians. In many cases, nurses due to lack of support from physicians as well as lack of legislation and proper training, have no role to play in this respect. In Western Countries, nurse is a pivotal member of the team in charge of disclosing bad news. The role of the nurse is multifaceted and includes that of facilitator, supportive, counselor, educator and teacher (Hollis et al., 2013). In the previous studies the following strategies have been proposed to increase the participation of nurses in the disclosure of bad news: providing support and authority and developing clear rules for the participation of nurses in the process of bad news disclosure as well as training them to enhance professional accountability and confidence in communicating with patients and their families (Tabak et al., 2012; Tsoussis et al., 2013; Warnock et al., 2010). In this study, like many countries in Asia and the Middle East, family opposition with informing the patient of their disease, was one of the main reasons for nondisclosure. This conservative viewpoint of family about the cancer disclosure can be attributed to socio-cultural backgrounds of the society. The following factors may have contributed in such development: Firstly, cancer in Iranian society is generally equal to disability and death, and the family believes that disclosing the cancer diagnosis would lead to frustration, depression and even disability and premature death. Secondly, the collectivistic culture is dominant in the society based on which family members can decide for individuals in various cases including health issues. Thirdly, family does not have enough confidence to empathic and compassionate disclosure of cancer diagnosis by the healthcare team. Despite the fact that many challenges associated with bad news disclosure are related to the attitudes, feelings, and beliefs of the people toward cancer disclosure to patients; in most Middle East countries, sufficient efforts have not been made to clarify the attitudes and beliefs of the people (Bou Khalil, 2013). Multiple sources put emphasis on the need for the participation of mass media and their significant impact on awareness and attitudes of society towards cancer and cancer disclosure to patients (Demin and Gamaley, 2013; Zakotnik, 2013). The media can play an important role in changing the attitude of the society toward cancer disclosure through spreading information on the improvements made in the treatment of this disease,
the positive results of cancer disclosure in an appropriate manner on patient satisfaction and better psychological and emotional adjustment of the patient (Laxmi and Anjum Khan, 2013; Parsa et al., 2011; Schofield et al., 2003). Furthermore, getting help from clear viewpoint of Islam on respecting the individual's right to get informed, making free decision, seeking forgiveness (Aljubran, 2013; Janbabaei et al., 2014) and making a will (Quran) is a useful solution to change the attitude toward full disclosure in Islamic countries. The viewpoint of Islam to the disease is a positive and constructive one, and the disease is considered as a means to erase the sins of the patient and improve his rank in the sight of Allah (Ibn Babawayh, 381 AH). These positive principles of Islam can be utilized to reduce people's fear of cancer, which is often considered as a taboo in Iran (Zamanzadeh et al., 2011). In addition to the healthcare system problems and challenges related to family opposition; legislative weaknesses and also the lack of protection by supporting organizations from those performing such an important task is one of the problems that leads to non-effective disclosure. Iran's Ministry of Health and Medical Education has approved the Patient's Right Charter in 2011, which emphasize the importance of informing the patient in a manner appropriate to his condition (MOHME, 2011). However, there is still no binding regulation that requires the healthcare team to inform the patient of the facts related to their disease. Regarding the lack of legal protection for the healthcare team in disclosing bad news, there is always fear of possible complaints made by family members about the damage to their patient on disclosure of bad news; and this can be a significant obstacle to cancer disclosure for healthcare team. In 2013, Bou Khalil in a review of articles published on the cancer disclosure in the Middle East found that the most important factor influencing this phenomenon is lack of regulations and codes relating to the patients' rights on informed consent. He believed that cultural incompatibility with the codes, rules and principles laid down in the West, would never justify the lack of codes and regulations; and letting physicians to get help from their own judgment for bad news disclosure strategy to cancer patients in the Middle East (Bou Khalil, 2013). It seems that emotional and even financial support of the healthcare team members who attend bad news disclosure can also increase their motivation in performing their task effectively. It has been demonstrated that patient interview about disclosing bad news is associated with emotional distress and exhaustion, professional demotivation, low level of personal achievement and burn out in oncology staffs (Stiefel and Krenz, 2013). In fact, in oncology compared to other settings, additional strain is produced by the frequency of the bad news disclosure and dealing with patient's death and suffering. Furthermore, the lack of proper training as well as imbalance with increasing demand of human resources on the one hand, and a lack of sufficient financial resources on the other hand, have caused a negative influence on the psychological status of oncology staff (Sehlen et al., 2009). Therefore, participation of supporting agencies in providing professional supportive services to those involved in cancer disclosure is fundamental to the news being delivered effectively by staff who feel they can do so with confidence and competence (Hollis et al., 2013).
6.1. Study limitation In this study, all participants were selected from a single university hospital in Isfahan, which may restrict the generalizability of the results. However, the researchers used a purposive sampling method to include participants with a variety in socio-demographic and clinical variables, and the number of participants was reasonable for a qualitative research.
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7. Conclusions The conservative attitude and the concealment approach toward cancer diagnosis in Iran is a challenge with various possible reasons. Given the deep social, cultural and professional roots of this predicament, a comprehensive effort is required to create an appropriate foundation for moving from the perspective of “concealment attitude” toward the attitude of “respecting the right of a patient to get informed”. In this respect, the priority should be given to medical education with an emphasis on training communication skills to physicians and nurses for breaking bad news. Furthermore, the following measures could be helpful in improving bad news disclosure: taking into account the cultural desires of society; developing domestic guidelines and preparation of healthcare team for its application; setting binding and clear regulations; getting help from supportive resources to guarantee accomplishment of this task by healthcare team; and also support from mass media and teachings of Islam to reduce the fear of cancer. Conflict of interest statement None declared. References Al-Mohaimeed, A., Sharaf, F.K., 2013. Breaking bad news issues: a survey Among physicians. Oman Med. J. 28, 20e25. Aljubran, A.H., 2013. Chellenges to the disclosure of bad news to Cancer patients in the Middle East: Saudi Arabia as an example. In: Surbone, A., Zwitter, M., Rajer, M., Stiefel, F. (Eds.), New Challenges in Communication with Cancer Patients. Springer, New York. AMA (American Medical Association), 1847. Code of Medical Ethics accessed 12.27. 15. www.ama-assn.org/ama/pub/about-ama/our-history/history-ama-ethics. Samimi Ardestani, S.M., Faridhosseini, F., Shirkhani, F., Karamad, A., Farid, L., Fayyazi Bordbar, M.R., Motlagh, A., 2015. Do Cancer patients prefer to know the Diagnosis? A descriptive study Among iranian patients. Iran. J. Psychiatry Behav. Sci. 9, e1792. Bakhshi Biniaz, R., Goudarzi, M., Sahmani, M., Moghaddasi, M.H., Dehghanifard, A., Vatanmakanian, M., Azad, M., 2014. Challenges in the treatment of Iranian patients with leukemia in comparison with developed countries from the perspective of specialists. J. Paramedical Sci. (JPS) 5, 50e57. Bou Khalil, R., 2013. Attitudes, beliefs and perceptions regarding truth disclosure of cancer-related information in the Middle East: a review. Pallit Support Care 11, 69e78. Buckman, R.A., 2005. Breaking bad news: the S-P-I-K-E-S strategy. Community Oncol. 2, 138e142. Cherny, N.I., Catane, R., Chasen, M.R., Grigorescu, A.C., Kloke, M., Olver, I., Ozyilkan, O., Iise Pohl, G.M., Ripamonti, C., Rubach, M., Rukhadze, T., Schrijvers, D., Stevens, A.-M., Strasser, F., Wagnerova, M., 2011. Factors influencing the attitudes and behaviors of oncologists regarding the truthful disclosure of information to patients with advanced and incurable cancer. Psycho-Oncology 1269e1284. Cialkowska-Rysz, A., Dzierzanowski, T., 2013. Personal fear of death affects the proper process of breaking bad news. Arch. Med. Sci. 127e131. Cronin, P., Conghlan, M., Smith, V., 2015. Understanding Nursing and Health Care Research. SAGE, Los Angeles. Demin, E., Gamaley, A., 2013. Communication with Cancer patients in Russia: improving patients' participation and motivation. In: Surbone, A., Zwitter, M., Rajer, M., Stiefel, F. (Eds.), New Challenges in Communication with Cancer Patients. Springer, New York. Graneheim, U., Lundman, B., 2004. Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Educ. Today 24, 105e112. Green, J., Thorogood, N., 2014. Qualitative Methods for Health Research. SAGE, Los Angeles. Guba, E.G., 1981. Criteria for assessing the trustwortheness of naturalistic inquiries. ECTJ 29, 75e91. Hollis, R., Corkin, D., Crawford, D., Campbell, M., Coad, J., Davies, J., Dunlop, S., Hutchison, R., Shirtliffe, J., 2013. Breaking Bad News: Supporting Parents when They Are Told of Their Child's Diagnosis. Royal College of Nursing, London.
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Ibn Babawayh, M. I. A. 381 AH. Al Mawaiz, Tehran, Mortazavi Publication. Janbabaei, G., Hesamzadeh, A., Esmaeili, R., 2014. A review of approaches for disclosing cancer diagnosis to the patients. J. Clin. Exc 3, 12e28. Kagawa-Singer, M., 2013. Teaching culturally component communication with diverse ethnis patients and families. In: Surbone, A., Zwitter, M., Rajer, M., Stiefel, F. (Eds.), New Challenges in Communication with cancer Patients. Springer, New York. Larizadeh, M., Malekpour-Afshar, R., 2007. Knowledge of patients with Cancer towards their disease status. Res. Med. 31, 85e90. Laxmi, S., Anjum Khan, J., 2013. Does the cancer patients want to know? Results feom a study in an Indian tertiary cancer center. South Asian J. Cancer 2, 57e61. Li, J., Yuan, X.L., Gao, X.H., Yang, X.M., Jing, P., Yu, S.Y., 2012. Whether, when, and who to disclose bad news to patients with cancer: a survey in 150 pairs of hospitalized patients with cancer and family members in China. PsychoOncology 21, 778e784. Mazilu, L., Niculescu, Z., Suceveanu, A.I., Suceveanu, A.P., Tofolean, D., Adam, T., 2010. Ethical aspects of communication with cancer patients. Romanian J. Bioeth. 8, 181e188. MOHME (Iran's Ministry of Health and Medical Education), 2011. National Code of Ethics in Nursing accessed 12.28 .15. http://dn.behdasht.gov.ir/index.aspx? fkeyid¼&siteid¼329&pageid¼53332. Munhall, P., 2007. Jones And Bartlett Publishers. Nursing Researh, Sudbury. Narayanan, V., Bista, B., Koshy, C., 2010. 'BREAKS' Protocol for breaking bad news. Indian J. Palliat. Care 16, 61e65. Ozdogan, M., Samur, M., Artac, M., Yildia, M., Savas, B., Bozcuk, H.S., 2006. Factors related to truth-telling practices of physicians treating patients with Cancer in Turkey. J. Palliat. Med. 9, 1114e1119. Parsa, M., Bagheri, A., Larijani, B., 2011. Telling bad news and its various aspects. Iran. J. Med. Ethics Hist. Med. 4, 1e14. Quran Sura Al-Baqarah, Ayah 180. Rabow, M.W., Mcphee, S.J., 1999. Beyond breaking bad news: how to help patients who suffer. WJM 171, 260e263. Ramezani, R., 2009. National Report of Cancer Cases. Ministry of Health and Medical Education, Tehran. Salem, A., Salem, A.-F., 2013. Breaking bad news: current prospective and practical guideline for muslim countries. J. Canc Educ. 28, 790e794. Schofield, P., Butow, P., Thompson, J., Tattersall, M., Beeney, L., Dunn, S., 2003. Psychological responses of patients receiving a diagnosis of Cancer. Ann. Oncol. 48e56. Schwartsmann, G., Brunetto, A.T., 2013. Evolution of truth-telling practices in Brazil and south America. In: Surbone, A., Zwitter, M., Rajer, M., Stiefel, R. (Eds.), New Challenges in Communication with Cancer Patients. Springer, New York. Sehlen, S., Vordermark, D., Schafer, C., Herschbach, P., Bayerl, A., Pigorsch, S., Rittweger, J., Dormin, C., Bolling, T., Wypior, H.J., Zehentmayr, F., Schulze, W., Geinitz, H., 2009. Job stress and job satisfaction of physicians, radiographers, nurses and physicists working in radiotherapy: a multicenter analysis by the DEGRO Quality of Life Work Group. Radiat. Oncol. 4, 1e9. Stiefel, F., Krenz, S., 2013. Psychological challenges for the oncology clinician who has to break bad news. In: Surbone, A., Zwitter, M., Rajer, M., Stiefel, R. (Eds.), New Challenges in Communication with Cancer Patients. Springer, New York. Tabak, N., Itzhaki, M., Sharon, D., Barnoy, S., 2012. Intentions of nurses and nursing students to tell the whole truth to patients and family members. J. Clin. Nurs. 1434e1441. Tarighat Saber, G., Zarei, S., Etemadi, A., Mohammadi, M.R., Shams, G., 2006. Assessment of Knowledge and Satisfaction of Information Given in Cancer Patients Referred to Imam Khomeini Hospital 1382-1383 and its Association with Anxiety and Depression in These Patients, vol. 64. Tehran University Medical Journal, pp. 165e171. Taylor, B., Francis, K., 2013. 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Iranian physicians and patients Attitude toward truth telling of Cancer. J. Isfahan Med. Sch. 29, 752e760. Zamanzadeh, V., Rahmani, A., Valizadeh, L., Ferguson, C., Hassankhani, H., Nikfar, A.R., Howard, F., 2013. The taboo of cancer: the experinces of cancer disclosure by Iranian patients, their family members and Physicians. PsychoOncology 22, 396e402.
Contents lists available at ScienceDirect
European Journal of Oncology Nursing journal homepage: www.elsevier.com/locate/ejon
Perceptions of patients, families, physicians and nurses regarding challenges in cancer disclosure: A descriptive qualitative study Maryam Ehsani a, Fariba Taleghani b, Simin Hematti c, Parvaneh Abazari b, * a
Students Research Center, Faculty of Nursing and Midwifery, Isfahan University of Medical Sciences, Isfahan, Iran Nursing and Midwifery Care Research Center, Faculty of Nursing and Midwifery, Isfahan University of Medical Sciences, Isfahan, Iran c Radiotherapy and Oncology Department, Faculty of Medicine, Isfahan University of Medical Sciences, Isfahan, Iran b
a r t i c l e i n f o
a b s t r a c t
Article history: Received 1 February 2016 Received in revised form 4 September 2016 Accepted 9 September 2016
Purpose: The findings of numerous studies have illustrated that there is still a high proportion of cancer patients in Eastern and Middle-East countries including Iran, who are not properly informed of their disease due to the concealment atmosphere which still prevails. This descriptive qualitative study is aimed at exploring perceptions of patients, patients’ family members, physicians and nurses regarding cancer disclosure challenges. Methods: Thirty-five participants (15 patients, 6 family members, 9 physicians, and 5 nurses) were selected through purposive sampling. The data were collected through in-depth interviews; after which they were analyzed using a qualitative content analysis with an inductive approach. Results: Data analysis revealed the following three categories: first, challenges related to healthcare system which deals with the deficiencies, strains and concerns in medical setting and healthcare team training; second, challenges related to family insistence on concealment which includes their fear of cancer disclosure and its negative impact on the patients; and third, challenges related to policy making which consists of deficiencies in legislative and supportive institutions for advocacy of truth telling. Conclusions: Successful move from concealment to effective disclosure attitude in cancer patients in Iran requires a national determination for resolving challenges in medical education as well as other different social, cultural and policy making dimensions. © 2016 Published by Elsevier Ltd.
Keywords: Cancer disclosure Breaking bad news Qualitative study
1. Introduction Announcing the diagnosis of a life-threatening disease is one of the most challenging and stressful tasks (Stiefel and Krenz, 2013). Cancer as a life-threatening disease, despite significant advances in its treatment or at least its control, is still considered in many cultures equal to death and its diagnosis is associated with significant fear, uncertainty and a complex and laborious treatment (Mazilu et al., 2010). Bad news disclosure in medicine has passed a long historical path. The Hippocratic writings suggested that “honest revelation” about disease outcome could be the cause for worsening of a patient's prognosis. Plato also believed that a lie could sometimes act
* Corresponding author. E-mail addresses: [email protected] (M. Ehsani), taleghani@nm. mui.ac.ir (F. Taleghani), [email protected] (S. Hematti), [email protected] (P. Abazari). http://dx.doi.org/10.1016/j.ejon.2016.09.003 1462-3889/© 2016 Published by Elsevier Ltd.
as a medicine to prevent undesirable actions and views in patients (Schwartsmann and Brunetto, 2013). Moreover, the first Code of Ethics issued in 1847 by the American Medical Association, instructed physicians to avoid making “gloomy prognostications” to patients, leaving the information on cancer diagnosis and bad prognosis to their relatives, because the life of a patient could be shortened not only by the acts, but also by the words and the style of a physician (AMA, 1847). In the Western culture, since the second half of the twentieth century and with the gradual disappearance of paternalistic tradition, truth telling has undergone a lot of changes. During this period, rights of individuals and autonomy models are considered paramount, and following this model, bad news is communicated directly and honestly to the patients (AlMohaimeed and Sharaf, 2013; Tabak et al., 2012). Today in most western countries, informing the cancer patients of their disease is a common practice; but in Eastern countries, despite the fact that this phenomenon is more acceptable than the previous decade, there is still a significant percentage of cancer patients in some Asian countries and the Mediterranean who are
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not informed of their disease (Bou Khalil, 2013; Cherny et al., 2011; Laxmi and Anjum Khan, 2013; Ozdogan et al., 2006). Findings of various studies show that the family's request from the medical team not to disclose the disease to the patient is one of the most important reasons for secrecy in these countries (Bou Khalil, 2013; Cherny et al., 2011; Laxmi and Anjum Khan, 2013; Ozdogan et al., 2006). Besides the opposition of the family, there are other factors considered as obstacles in full disclosure of cancer to patients. These factors include: fear of physicians lacking the ability to control emotional reactions of patients after the disclosure, fear of harming the patients with cancer disclosure, physicians' concern of the fact that cancer disclosure is not acceptable from the viewpoint of professional culture as well as dominating culture of society, lack of proper training for healthcare team on the fundamentals of effective communication in disclosing bad news, workload and time shortage of healthcare team as well as the lack of legal code on the necessity of informing the patient of their disease (Bou Khalil, 2013; Cherny et al., 2011; Laxmi and Anjum Khan, 2013; Ozdogan et al., 2006; Tabak et al., 2012). Similarly, the results of several studies in Iran suggest that about 40% of cancer patients are not informed of their disease. However, 88% of patients agree with diagnosis disclosure and 59% of cancer patients are willing to get maximum information on their disease by their physicians (Larizadeh and Malekpour-Afshar, 2007; Samimi Ardestani et al., 2015, Tarighat saber et al., 2006; Zamani et al., 2011). Despite the ample evidence which illustrates that disclosure of bad news in a proper way would result in easier acceptance of treatment, more satisfaction and even lower levels of anxiety and mood disturbances in cancer patients (Al-Mohaimeed and Sharaf, 2013; Laxmi and Anjum Khan, 2013; Schofield et al., 2003), high proportion of cancer patients in Iran are not yet informed of their disease. Research on why this happens is inadequate. Multiple sources emphasize that bad news disclosure is an entirely cultural issue in which perceptions and attitudes of every society's individuals play an important role (Kagawa-Singer, 2013; Zahedi, 2011). Moreover, qualitative studies are among the best ones to reveal these attitudes in a “culture” which may be hidden from daily awareness (Munhall, 2007). This article, which itself is part of a larger study entitled “Developing and implementing breaking bad news protocol for cancer patients”, aimed to explore perceptions of cancer patients, their families, physicians and nurses as main participants in bad news disclosure on the main challenges in this process. 2. Aim The aim of this study is to explore the perceptions of cancer patients, their families, physicians and nurses concerning the challenges in disclosure of cancer diagnosis. 3. Method 3.1. Study design In this study, descriptive qualitative method was applied. The overall purpose of a descriptive qualitative study is to describe or explore a phenomenon, problem or issue and can encompass a broad range of questions relating to people's experiences, knowledge, attitudes, feeling, perceptions and/or views. It is suitable for “why”, “what”, “where” and “how”, questions (Cronin et al., 2015). 3.2. Participants In this study, all participants were recruited from a university hospital in Isfahan Province, Iran. This hospital is one of the main
referral centers for cancer patients in central and southern Iran. The participants in all four groups (patients, patients' family, physicians and nurses) were purposively chosen to ensure a range in sociodemographic, occupational and clinical characteristics such as age, cancer type, specialty, etc in the groups. In purposive sampling, researchers deliberately select their participants using two criteria: first, the fit between their experience and research question, and secondly, the presence of the characteristics of a “good informant” (Munhall, 2007). Inclusion criteria for the patients were as follow: age of 18 or older, a definitive diagnosis of cancer based on pathologic findings, awareness of the diagnosis (this was obtained through nurses and physicians before interviewing the patients) and lack of physical or cognitive difficulties affecting their participation. Inclusion criteria for family members were: having close family relationship with the patients, knowing patients’ cancer diagnosis and lack of physical and cognitive problems. Inclusion criteria of physicians and nurses were: having at least one year experience of treatment and care of cancer patients. 4. Procedure The data of this study were collected from October 2014 to June 2015 using semi-structured in-depth interviews with participants. All interviews were conducted in a private room at the hospital and the time and place were determined with the consent of the participants. Length of interviews varied between 30 and 120 min and the median length was 50 min. Participants’ selection and data analysis continued until reaching data saturation point. Data saturation is the stage where no new information was obtained through data analysis and when this repetition occurs, sampling may cease (Munhall, 2007). All interviews were conducted with the written consent of the participants and were performed and recorded by one of the researchers (ME). All interviews began with general questions to establish a close relationship based on trust between the interviewer and the participants and then, interviews dealt with more precise questions on the basis of the outcome of initial parts of the interviews. Examples of interview questions are presented in Table 1. 4.1. Data analysis Qualitative content analysis will suffice for many studies in the area of health, especially if they are descriptive or their aim is to describe an important topic in a particular group of people (Green and Thorogood, 2014). In this study, the qualitative content analysis method of Graneheim and Lundman was used for data analysis (Graneheim and Lundman, 2004) and an inductive approach was applied for this process. In Inductive content analysis approach, the categories are derived from the data, and the researcher moves from the specific instances to the general statement. We generated verbatim transcriptions of the audio taped interviews and two researchers (ME and PA) read all the transcriptions to immerse in the data and achieve a common sense with the perceptions of the participants. Firstly, ME and PA independently selected all meaning units (sentences or paragraphs that were extracted according to the participants' statements) and condensed meaning units of four selected manuscripts (one patient, one patient's family member, one physician and one nurse). Then, they were discussed, and after resolving the discrepancies, ME extracted the condensed meaning units of the remaining transcripts and discussed them with PA. Subsequently, ME and PA assigned codes to the condensed meaning units, reflecting the words of the participants in a more abstract way. Finally, similar codes were grouped into more comprehensive subcategories and categories
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Table 1 Examples of questions from the interview guide: Participants
Questions
Patients
When did you first realize that you have cancer? How? By whom? Were you satisfied of how you got informed of the disease? Why? Should a cancer patient be aware of their disease? Why? Why do you think some cancer patients are not told of their disease? What is the most important reason for concealing the diagnosis from the patient? When did the patient first get informed of their disease? How and by whom? What role did you have in the process of informing the patient of their cancer diagnosis? Should cancer patients get informed of their disease? Why? Why do some families insist on concealing the disease from the patient? How do you usually inform the patient of their diagnosis? Which factors makes you to conceal cancer disease from the patients themselves? Why do physicians sometimes follow the request of patient's family to conceal the disease from the patient? What strategies can help to solve the problems with bad news disclosure in our country? How much do you participate in the process of cancer diagnosis disclosure to the patients and their family? What are the most important obstacles which make you conceal the disease from the patients themselves? What strategies can help to solve the problems with bad news disclosure in our country?
Family members
Physicians
Nurses
through an inductive process by comparison, reflection and interpretation by ME. All sub-categories and categories were discussed with PA and in case of persisting disagreement; the judgment of a third researcher (FT) was decisive. 4.2. Rigor Confirmability, credibility, dependability and transferability were used to assure various aspects of rigor (Guba, 1981). Confirmability was enhanced by bracketing and keeping a clear and easy-to-follow audit trail of all research activities and analysis notes. To ensure credibility, we used long presence in the clinical setting, maximum variance of sampling, peer debriefing or reviewing of the data, codes, subcategories and categories and member checking of the findings by research participants. Dependability was also improved by engaging more than one researcher in data analysis. Recruiting participants who varied on demographic characteristics and cancer type helped transferability of the results. The authors’ preconception was that the challenge of concealing the cancer disclosure from the patients is a multi-factorial phenomenon which is affected by different cultural, social and professional factors. They thought varied cultural beliefs among Iranian families on cancer as well as harmful effects of its disclosure on patient recovery could be a main challenge in cancer disclosure. Furthermore, authors believed that defects in health care system especially among professionals could spur this challenge. Researchers tried to mitigate the potentially deleterious effects of their preconceptions that may taint the research process by techniques such as writing memos and reflexive journal. This process is known as bracketing in qualitative researches and it means acknowledging and setting aside what you already know about a research interest, so that you do not impose your prejudices on what emerges from the research methods and processes (Taylor and Francis, 2013). 4.3. Ethical considerations This study was approved by the Ethics Committee of Isfahan University of Medical Sciences. Verbal and written consent was obtained from participants. All necessary measures were taken for keeping anonymity of the participants and confidentiality of their identity. Essential information regarding the purpose of the study was given to the participants in oral and written form, and it was emphasized to them that they could withdraw from the study anytime they wish.
5. Results 5.1. Participants’ characteristics In this study, 35 participants including 15 patients, 6 family members, 9 physicians and 5 nurses were engaged. Patients participating in the study had a wide range of different types of cancer, including colon, leukemia, breast, brain, Hodgkin, multiple myeloma and skin. The average age of patients was about 45 years, and for the family members it was 49 years. The range of passed days since cancer diagnosis in patients was between 60 and 2520 days and in family members it was 150e1980 days. The average of passed days since cancer diagnosis in patients was 710 days and in family members it was 760 days. The average work experience was about 16 and 9 years for physicians and nurses respectively. Further characteristics of the participants are illustrated in Table 2. 5.2. Categories The following three categories were obtained through findings of the present study: challenges related to healthcare system, challenges related to family insistence on concealment and challenges related to policy making. The main categories and subcategories produced by data analysis are shown in Table 3. 5.3. Challenges related to healthcare system This category includes barriers pertinent to the healthcare system and its staff and consists of four sub-categories: “Job strain”, “Fear of the consequences of bad news disclosure”, “Lack of formal training for healthcare team” and “Lack of holistic view to the patient ”. Healthcare team especially physicians believe that excessive workload is one of the reasons for avoiding cancer disclosure to patients. They believe that job strain makes it often difficult for them to spend enough time for proper communication with the patient and in many cases physicians prefer to disclose the news in brief to the patient's family members. An oncologist says: “When a physician has to visit 50 patients in the hospital from morning to noon, must train students as well, should do diagnostic work, for example, controlling patient's blood smear; he wouldn't certainly have enough time to talk with the patient about his illness.” [D3]. A patient says: “Doctors are so busy that they don't have time to talk with the patients about their disease, and just disclose it in brief to their family members.” [P2].
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Table 2 Participants’ characteristics. Participant
Characteristics Age (year)
Gender
Education level
Cancer type
Time since diagnosis (month)
Patient
20-29: 30-39: 40-49: 50-59: 60-69:
Male: 6 Female:9
Illiterate: 1 Primary: 4 High School: 6 University: 4
<6 months: 4 6-12 months: 4 > 1 year : 4 > 5 year : 3
Family Member
30-39: 1 40-49: 1 50e59:3 60e69:1
Male: 3 Female: 3
Primary: 1 High School: 4 University: 1
Colon: 3 Leukemia: 2 Breast: 4 Brain: 2 Hodgkin: 1 Multiple Myeloma: 1 Skin: 2 Colon: 2 Leukemia: 1 Breast: 1 Brain: 1 Hodgkin: 1
Physician
30-39: 2 40-49: 5 50-59: 2
Male: 5 Female: 4
Specialist: 9
Nurse
20-29: 1 30-39: 4
Male: 2 Female: 3
Bachelor: 4 Master: 1
2 3 3 5 2
<6 months: 1 6-12 months: 2 > 1 year : 2 > 5 year : 1
Relationship with Patient
Work experience (year)
Job status
Housewife: 6 Employee: 2 Worker: 1 Self- employment: 2 Student: 1 Retired: 3 Wife: 1 Husband:2 Mother: 1 Daughter: 1 Son: 1 1-4: 1 5-9: 1 10-14: 1 15-19: 2 20-24: 4 1-4: 1 5-9: 2 10-14: 2
Housewife: 2 Employee: 2 Worker: 1 Retired: 1 Radiotherapist & Oncologist: 2 Hematologist & Oncologist: 3 Surgeon: 2 Psychiatrist: 2 Nurse: 3 Head Nurse: 1 Psychiatric Nurse: 1
Table 3 Categories and subcategories obtained from data analysis. Categories
Subcategories
Challenges related to health care system
Job strain Fear of the consequences of bad news disclosure Lack of formal training for healthcare team Lack of holistic view to the patient Family fear of the effects of breaking bad news on the patient Family fear of the inappropriate disclosure of bad news by healthcare team Family belief on the lack of necessity for patient awareness of their diagnosis Lack of legal code Lack of supporting resources
Challenges related to family insistence on concealment
Challenges related to policy making
Fearing the consequences of bad news disclosure was another sub-category of challenges associated with healthcare system and was seen both among physicians and nurses. Physicians usually avoided disclosing the news to the patients for following reasons: fear of psychological outcomes such as depression, fear of inappropriate reaction from patients after hearing the news such as anger and aggression; fear of complaints made by the patient's family claiming harm to patient's physical and psychological conditions. Nurses also preferred not to give any information to the patient and even his family about their diagnostic tests results, and leave it to the physicians for reasons such as lack of support for their participation in disease disclosure and fear of being reprimanded, especially by physicians. A psychiatrist says: “Physicians are more scared from the time they disclose to patients the cancer diagnosis, and patients become upset, and reflect it to them by anger, scream or cry”. [D6]. A nurse said: “When patients or their dependents ask about test result, I say I do not know, and tell them to ask their doctor because I am afraid to say something and then the physician asks me why I said so. But if doctors collaborate and support us, we can carry out this task very well.” [N2]. The participants considered lack of formal training during academic education as one of the challenges in disclosure of bad news and believed that such training could equip them with both knowledge and self-confidence in disclosing the news.
An oncologist says: “In Iran, physicians have never been trained about the fundamentals of psycho-oncology and disclosure of bad news; not even during residency and fellowship courses”. [D3]. Another oncologist adds: “Training is very crucial for disclosing bad news and the one who discloses the news must have already been well trained. When we do not get any training in this respect during formal education, it is sure we have neither the knowledge nor the confidence to do it.” [D4]. Additionally, the priority put by healthcare team on the physical aspects of treatment and lack of attention to psychological, social and spiritual aspects of a patient is another sub-category of healthcare challenges. A patient says: “As it is important to prescribe drugs to the patients, it is also crucial to talk to them, answer their questions, and be kind to them” [p11]. A nurse says: “Unfortunately, in our country, the importance put on the patient's physical needs and treatment is much more than other needs such as the need to get informed; spiritual and emotional need. Indeed, everything here is sacrificed for treatment”.[N3].
5.4. Challenges related to family insistence on concealment In Iran, usually family members of cancer patients are the first recipients of bad news even before the patients, and this is in many cases a major obstacle to inform the patients. Close family members
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do their best to hide the disease from the patient and in doing so they even convince the healthcare team, especially physicians, not to talk to the patient about the cancer diagnosis. This category itself is composed of three subcategories of: “family fear of the effects of disclosing bad news on the patient”, “family fear of the inappropriate disclosure of bad news by healthcare team” and “family belief on the lack of necessity for patient awareness of their diagnosis”. Fearing of patient disappointment and demoralization after getting informed of cancer diagnosis is one of the most important reasons for family persistence on concealing the disease from the patient. The wife of a patient says: “I think it's much better if the patient doesn't know it, because when we tell him about cancer diagnosis, he would lose his morale.” [F1]. An oncologist says: “As a physician I know when I give the news of cancer diagnosis to a patient, certainly he would get depressed and I know that this is not unusual and would get better through time, but the family wouldn't accept this and accordingly wouldn't let us to tell it ”.[D3]. Fear of family members from inappropriate disclosure of cancer news is another reason for their opposition to news disclosure to patients. In many cases, they are worried that the healthcare team would inform the patient of their disease in a sudden and nonempathetic manner and that is why they prefer either not to inform the patient of their disease at all or inform them gradually themselves. A patient says: “Doctors tell the news in a somehow more serious way; and they may do it in this manner to fear us so that we take it seriously, but families don't like this and prefer to tell it themselves gradually”.[P13]. Participating physicians' experiences somehow confirms the concerns of patients’ family members. An oncologist says: “Sometimes we have to talk to the patient very seriously and tell them that their disease is a malignant one and even fear them of it. However, we do this only with those patients who we recognize that if they are not scared, they would not follow up their treatment ”. [D4]. In this study, the family belief in lack of necessity to inform the patient of their disease was known as another reason for family opposition with cancer disclosure. Indeed, in Iran in many cases, family members based on their supportive attitude toward the patient with cancer diagnosis, do not feel the necessity to inform them of their disease and believe they can do all measures required for treatment and improvement of the patient's life quality. But they ignore the fact that it is the patient's right to be aware of the issues related to their disease and participate in decisions related to their own treatment process. A nurse says: “unfortunately, some of the patients' relatives don't deserve any right for the patient; in some cases patients aren't willing to go through chemotherapy in the final stages anymore, but the family insists on continuing it. Patients should be allowed to make the final decision”. [N4]. The wife of a patient says: “It's better for the patient to know nothing about their disease; it would suffice if only the family knows, and they'd do everything they can”. [F6]. 5.5. Challenges related to policy making This category embraces the findings which are related to the weaknesses in policy making on bad news disclosure and consists of two subcategories: “lack of legal code” and “lack of supporting resources”. In Iran, despite the emphasis put by the Patient's Rights Charter and Nursing Code of Ethics on the importance of informing the patient of issues related to their disease; there is no law that legally binds members of healthcare team to do this task; and that is why
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in many cases the patient is deprived from receiving the information about the disease. A psychiatrist says: “In the present conditions that the system itself eludes telling the truth and the family says “do not tell” while we all know that the right measure is to inform the patient; the only way to overcome the problem is provision of legal code. In such a situation, even if the family disagrees, the physician says that he is legally responsible to say so and tries to convince them”. [D6]. A patient adds: “If they set a law and make it binding, no one can disagree with it”. [p6]. For many participants, due to the high sensitivity of the session for bad news disclosure both for the announcer and the recipient, as well as the need to spend enough time; the assistance of supportive organizations such as insurance companies can play an important role in increasing the motivation and attention of the healthcare team to this important task, especially in conditions of high job strain. An oncologist says: “the session for disclosing bad news is in fact a counseling session, a lot of pressure is on ourselves as we have to disclose it. On the one hand, we are too busy to spend so much time for the patient, and on the other hand insurance companies should consider for the session a tariff equivalent to that of counseling sessions, as it is in other countries.” [D7]. A surgeon says: “If this was so, that is, the insurance companies support it or the medical centers offer special benefits for physicians especially surgeons and oncologists, it'd be very ideal, because it's a difficult task, especially in Iran with such a culture, not only the patients but also the physicians are under pressure as well.” [D8]. 6. Discussion In this study, the researchers tried to provide a clearer understanding of the challenges faced in cancer disclosure in Iran, through conducting a qualitative study and exploring perceptions of cancer patients and their families as well as physicians and nurses as members of the healthcare team. The findings of this study revealed that obstacles relating to healthcare system and its professionals are one of the main ones in cancer disclosure. Physicians, as one of the main members of the healthcare team in disclosure of cancer diagnosis, usually spend very little time for proper communication and interaction with patients. The main reason they put forth was their various responsibilities and busy schedules. Various resources confirm that high incidence of cancer diagnosis in recent years on the one hand, and shortage of oncologists on the other hand, has led to a rise in their workload (Bakhshi Biniaz et al., 2014; Ramezani, 2009). The finding of several studies also confirm the adverse impact of time shortage, fatigue and job exhaustion on physicians' poor performance in bad news disclosure. Indeed, the same studies show that many physicians, when encountering workload, usually put the main priority on patient treatment rather than the effective communication with patient; and even most of them use unexpected and inappropriate methods of communication for news disclosure (Bou Khalil, 2013; Cherny et al., 2011; Cialkowska-Rysz and Dzierzanowski, 2013; Li et al., 2012). The existing guidelines and protocols on breaking bad news consider multiple stages for bad news disclosure such as preparation, rapport, announcement, empathy and mutual understanding of the patient; and emphasize that this task should be performed step by step and on the basis of effective communication principles. Otherwise, it would result in dissatisfaction, non-compliance and doctor shopping among patients and their families (Buckman, 2005; Laxmi and Anjum Khan, 2013; Narayanan et al., 2010; Rabow and Mcphee, 1999, Salem and Salem, 2013). In this study, one of the reasons physicians avoided informing
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patients of cancer diagnosis, was fear of the consequences of such disclosure. Physicians usually are concerned that after disclosing the news of cancer diagnosis, the patient would react in a way that they are not able to control it or they fear facing the anger of families after informing the patient. Cherny et al. (2011) and Tabak et al. (2012) have mentioned the followings as the major reasons why physicians avoid disclosing bad news to the patients: the fear of not having enough knowledge about how to control emotional reactions of the patient, patient protection against damages caused by knowing about their disease and also fear of establishing a proper dialogue and communication while disclosing the news (Cherny et al., 2011; Tabak et al., 2012). In Iran, it seems that the physicians’ fear of disclosing bad news evolves mainly from lack of training on this process. Since physicians in Iran receive no formal training on communication skills in breaking bad news during their residency and fellowship, so in many cases they do not have the required knowledge and even confidence to do so, as well as how to cope and control a wide range of patient reactions. Several sources emphasize that training is the first step to improve the communication skills of physicians in relation to disclosure of bad news and it has a direct impact on the frequency of news disclosure by them. Despite the importance of training, there is no curriculum in many Middle Eastern countries dealing with this serious responsibility (Bou Khalil, 2013; Li et al., 2012; Ozdogan et al., 2006; Tsoussis et al., 2013). Nurses as another member of the healthcare team, do not play an important role in disclosing bad news alongside the physicians. In many cases, nurses due to lack of support from physicians as well as lack of legislation and proper training, have no role to play in this respect. In Western Countries, nurse is a pivotal member of the team in charge of disclosing bad news. The role of the nurse is multifaceted and includes that of facilitator, supportive, counselor, educator and teacher (Hollis et al., 2013). In the previous studies the following strategies have been proposed to increase the participation of nurses in the disclosure of bad news: providing support and authority and developing clear rules for the participation of nurses in the process of bad news disclosure as well as training them to enhance professional accountability and confidence in communicating with patients and their families (Tabak et al., 2012; Tsoussis et al., 2013; Warnock et al., 2010). In this study, like many countries in Asia and the Middle East, family opposition with informing the patient of their disease, was one of the main reasons for nondisclosure. This conservative viewpoint of family about the cancer disclosure can be attributed to socio-cultural backgrounds of the society. The following factors may have contributed in such development: Firstly, cancer in Iranian society is generally equal to disability and death, and the family believes that disclosing the cancer diagnosis would lead to frustration, depression and even disability and premature death. Secondly, the collectivistic culture is dominant in the society based on which family members can decide for individuals in various cases including health issues. Thirdly, family does not have enough confidence to empathic and compassionate disclosure of cancer diagnosis by the healthcare team. Despite the fact that many challenges associated with bad news disclosure are related to the attitudes, feelings, and beliefs of the people toward cancer disclosure to patients; in most Middle East countries, sufficient efforts have not been made to clarify the attitudes and beliefs of the people (Bou Khalil, 2013). Multiple sources put emphasis on the need for the participation of mass media and their significant impact on awareness and attitudes of society towards cancer and cancer disclosure to patients (Demin and Gamaley, 2013; Zakotnik, 2013). The media can play an important role in changing the attitude of the society toward cancer disclosure through spreading information on the improvements made in the treatment of this disease,
the positive results of cancer disclosure in an appropriate manner on patient satisfaction and better psychological and emotional adjustment of the patient (Laxmi and Anjum Khan, 2013; Parsa et al., 2011; Schofield et al., 2003). Furthermore, getting help from clear viewpoint of Islam on respecting the individual's right to get informed, making free decision, seeking forgiveness (Aljubran, 2013; Janbabaei et al., 2014) and making a will (Quran) is a useful solution to change the attitude toward full disclosure in Islamic countries. The viewpoint of Islam to the disease is a positive and constructive one, and the disease is considered as a means to erase the sins of the patient and improve his rank in the sight of Allah (Ibn Babawayh, 381 AH). These positive principles of Islam can be utilized to reduce people's fear of cancer, which is often considered as a taboo in Iran (Zamanzadeh et al., 2011). In addition to the healthcare system problems and challenges related to family opposition; legislative weaknesses and also the lack of protection by supporting organizations from those performing such an important task is one of the problems that leads to non-effective disclosure. Iran's Ministry of Health and Medical Education has approved the Patient's Right Charter in 2011, which emphasize the importance of informing the patient in a manner appropriate to his condition (MOHME, 2011). However, there is still no binding regulation that requires the healthcare team to inform the patient of the facts related to their disease. Regarding the lack of legal protection for the healthcare team in disclosing bad news, there is always fear of possible complaints made by family members about the damage to their patient on disclosure of bad news; and this can be a significant obstacle to cancer disclosure for healthcare team. In 2013, Bou Khalil in a review of articles published on the cancer disclosure in the Middle East found that the most important factor influencing this phenomenon is lack of regulations and codes relating to the patients' rights on informed consent. He believed that cultural incompatibility with the codes, rules and principles laid down in the West, would never justify the lack of codes and regulations; and letting physicians to get help from their own judgment for bad news disclosure strategy to cancer patients in the Middle East (Bou Khalil, 2013). It seems that emotional and even financial support of the healthcare team members who attend bad news disclosure can also increase their motivation in performing their task effectively. It has been demonstrated that patient interview about disclosing bad news is associated with emotional distress and exhaustion, professional demotivation, low level of personal achievement and burn out in oncology staffs (Stiefel and Krenz, 2013). In fact, in oncology compared to other settings, additional strain is produced by the frequency of the bad news disclosure and dealing with patient's death and suffering. Furthermore, the lack of proper training as well as imbalance with increasing demand of human resources on the one hand, and a lack of sufficient financial resources on the other hand, have caused a negative influence on the psychological status of oncology staff (Sehlen et al., 2009). Therefore, participation of supporting agencies in providing professional supportive services to those involved in cancer disclosure is fundamental to the news being delivered effectively by staff who feel they can do so with confidence and competence (Hollis et al., 2013).
6.1. Study limitation In this study, all participants were selected from a single university hospital in Isfahan, which may restrict the generalizability of the results. However, the researchers used a purposive sampling method to include participants with a variety in socio-demographic and clinical variables, and the number of participants was reasonable for a qualitative research.
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7. Conclusions The conservative attitude and the concealment approach toward cancer diagnosis in Iran is a challenge with various possible reasons. Given the deep social, cultural and professional roots of this predicament, a comprehensive effort is required to create an appropriate foundation for moving from the perspective of “concealment attitude” toward the attitude of “respecting the right of a patient to get informed”. In this respect, the priority should be given to medical education with an emphasis on training communication skills to physicians and nurses for breaking bad news. Furthermore, the following measures could be helpful in improving bad news disclosure: taking into account the cultural desires of society; developing domestic guidelines and preparation of healthcare team for its application; setting binding and clear regulations; getting help from supportive resources to guarantee accomplishment of this task by healthcare team; and also support from mass media and teachings of Islam to reduce the fear of cancer. Conflict of interest statement None declared. References Al-Mohaimeed, A., Sharaf, F.K., 2013. Breaking bad news issues: a survey Among physicians. Oman Med. J. 28, 20e25. Aljubran, A.H., 2013. Chellenges to the disclosure of bad news to Cancer patients in the Middle East: Saudi Arabia as an example. In: Surbone, A., Zwitter, M., Rajer, M., Stiefel, F. (Eds.), New Challenges in Communication with Cancer Patients. Springer, New York. AMA (American Medical Association), 1847. Code of Medical Ethics accessed 12.27. 15. www.ama-assn.org/ama/pub/about-ama/our-history/history-ama-ethics. Samimi Ardestani, S.M., Faridhosseini, F., Shirkhani, F., Karamad, A., Farid, L., Fayyazi Bordbar, M.R., Motlagh, A., 2015. Do Cancer patients prefer to know the Diagnosis? A descriptive study Among iranian patients. Iran. J. Psychiatry Behav. Sci. 9, e1792. Bakhshi Biniaz, R., Goudarzi, M., Sahmani, M., Moghaddasi, M.H., Dehghanifard, A., Vatanmakanian, M., Azad, M., 2014. Challenges in the treatment of Iranian patients with leukemia in comparison with developed countries from the perspective of specialists. J. Paramedical Sci. (JPS) 5, 50e57. Bou Khalil, R., 2013. Attitudes, beliefs and perceptions regarding truth disclosure of cancer-related information in the Middle East: a review. Pallit Support Care 11, 69e78. Buckman, R.A., 2005. Breaking bad news: the S-P-I-K-E-S strategy. Community Oncol. 2, 138e142. Cherny, N.I., Catane, R., Chasen, M.R., Grigorescu, A.C., Kloke, M., Olver, I., Ozyilkan, O., Iise Pohl, G.M., Ripamonti, C., Rubach, M., Rukhadze, T., Schrijvers, D., Stevens, A.-M., Strasser, F., Wagnerova, M., 2011. Factors influencing the attitudes and behaviors of oncologists regarding the truthful disclosure of information to patients with advanced and incurable cancer. Psycho-Oncology 1269e1284. Cialkowska-Rysz, A., Dzierzanowski, T., 2013. Personal fear of death affects the proper process of breaking bad news. Arch. Med. Sci. 127e131. Cronin, P., Conghlan, M., Smith, V., 2015. Understanding Nursing and Health Care Research. SAGE, Los Angeles. Demin, E., Gamaley, A., 2013. Communication with Cancer patients in Russia: improving patients' participation and motivation. In: Surbone, A., Zwitter, M., Rajer, M., Stiefel, F. (Eds.), New Challenges in Communication with Cancer Patients. Springer, New York. Graneheim, U., Lundman, B., 2004. Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Educ. Today 24, 105e112. Green, J., Thorogood, N., 2014. Qualitative Methods for Health Research. SAGE, Los Angeles. Guba, E.G., 1981. Criteria for assessing the trustwortheness of naturalistic inquiries. ECTJ 29, 75e91. Hollis, R., Corkin, D., Crawford, D., Campbell, M., Coad, J., Davies, J., Dunlop, S., Hutchison, R., Shirtliffe, J., 2013. Breaking Bad News: Supporting Parents when They Are Told of Their Child's Diagnosis. Royal College of Nursing, London.
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